Prayers love and my heart just goes to your family and you wow you have been through so much I have been through some horrible health n insurance loops to and I hope things get better and maybe 🙏🏿 a miracle or the best he can be for his condition
I love his room and your sons hang out spot with dad. I know that boost Tony's will to keep going. With fshd and other autoimmune issues I have , hospital stays really feel lonely. So, you did an amazing job!!!!!
THis brings back memories. My husband was a bedridden "zebra" case for 5 years and bedridden. No less than 12 doctors of many specialties (multiple organ failures) in 2010 said to prepare for end of life. He wanted to keep fighting, despite being 98 lbs (down from 160) and extremely weak. I brought him home and did a multitude of alternative things (it was all we had left since they had given up on him) and slowly slowly slowly, I started noticing tiny signs he was getting better, one cell at a time. Doctors and some friends said I was cruel to keep him alive and should let go. He didn't want to go (I asked him every day) so I supported that. It took 4 years and life returned to him. He is now 120 lbs and very active, back to taking care of our farm and riding his tractor and making people in town smile again (he's very extroverted, lol). You just never know. Doctors never know for sure. Even hospice was not on our side... they wanted to drug him into a stupor which would've shut his heart down. We chased them all away and with the love and support of family and a few friends, and a LOT of doing things doctors rejected, he's still here.
@horsedesigns Good on you! Our bodies are stronger and more able to heal than most of us know. Only a rare few know about the power of natural healing methods, prayer, and complementary medicine. I have had similar experiences of witnessing and supporting "miraculous" healing in pets, wild animals, myself, family members, friends and neighbors.Most important is the ability to trust and follow your own intuition, instincts and inner knowledge! Your husband is a very lucky fellow to have you supporting!!
@@sarahann530 I didn’t heal anything. I just didn’t give up when the doctors did and lost a lot of sleep studying everything I could, most things that were over my head trying to figure out what his body may need. sometimes it works and sometimes it doesn’t but I just wanted to share so that people follow their instinct if they think there’s more that might be helpful than what they are being told.
Muscular dystrophy kills. My cousin had it. 70 years ago they said he wouldn’t live past 12. Then it was 18. Then it was 22. He had excellent personal care from his wife. He lived until he was 55! Fathered a child. Got to see her married. I hope you get a break. God bless.
@@nicolad8822 Good idea just in case because MD is inherited through the mother. But if H-E had it and fathered a daughter, the good thing is the daughter probably doesn't have the gene....if I understand it right. I had 2 brothers-in-laws with MD, both died in their 20's & 30's, neither married and neither had children...my MIL didn't know she had it to pass on.
When my husband was 3 weeks away from death, he wrote his kids a letter telling them what a wonder wife I had been. I kept the letter and framed it. That letter was truly a gift to me and has blessed me so much during my years of "widowhood". Thinking of you from Texas.
What an awesome set up!!!! And that sounds like a really really unique, good nursing home...wow!!! I am so impressed ...and proud of the people contributing to all of his care...and you are an awesome wife and person!! Thank you for sharing part of your families story❤❤❤
I had to make the difficult decision to put my husband in a nursing home. We (doctors, nurses and myself and kids told him he was in rehab). February 2022 he had his right leg amputated above the knee due to complications from diabetes. He was exposed to Agent Orange in Vietnam. The symptoms didn’t start showing up until around 2008 with diabetes being the first. Then he started having heart problems and then dementia. Of all I think dementia was the worst. It caused him to not take his medications ie insulin and blood pressure medication like he should. I was his total caregiver for him for the last two years until it was just too much for me. He was 77 and I am 73. He was only in the nursing home (which the VA was paying for because he was 80% service connected in his disability). He developed a severe UTI before going to the nursing home. It was the. That I knew I couldn’t continue taking care of him. He didn’t want to be on machines and didn’t want to go to a nursing home. I felt so guilty placing him in the nursing home. He was there a week before the UTI got so bad. They also had determined he had had a minor stroke and more than likely prostate cancer and bladder cancer (which was also a symptom of his Agent Orange exposure. In the end the infection from the UTI went to his heart. He passed away in May. Knowing that he didn’t want to be on machines to keep him alive I agreed to just keeping him comfortable. I felt so guilty for making that decision even though I knew it was what he wanted. It’s been 5 months since he passed and I’m taking it one day at a time. We were married 51 1/2 years. What helped us through all of this was the VA. Yes I know I’ve heard the horror stories about the VA but for us they were amazing.
Sounds very much like what my dad went through. Just know that even the decision was hard, it was the most loving thing you could've done for your husband. Blessings to you!
Honestly I do not believe it is ever easy for us to make these massive decisions for those we love. Sorry for your loss. I lost my mama in March. They had put her on a vent to help her breathing, so hot shot wanna be doctor kept demanding she be taken off. She had pneumonia and stage 4 COPD. They waited until I had to make an emergency run home to remove her from the vent. I walked in to seeing her struggle to breathe. She made the call then not to be on any more machines and kept comfortable. They kept asking me to talk to her. I stood the ground for her.
My dad passed away at 86 several months ago. About a week after his passing I was having dinner with Mom. She had just gone through some grief counseling. She learned that the reason that dad was behaving the way he had during the last few weeks of his life was because his body was preparing to die. She told me that if she had known she would have done some things differently. Praying for you and your family.
I hope she knows that she did the absolute best with the information she had and that your dad was blessed to have her. Give her an extra hug from this stranger ❤
Hi Jenny. There’s a great hospice nurse on TH-cam and her channel is called HOSPICE NURSE JULIE. She’s excellent for anyone with elderly or infirm family members. I care for my 90 yr old dad who has vascular dementia and I’ve gotten a lot of help from her channel. I wish your whole family the best. 🙏🏻👍
My husband also was diagnosed with vascular dementia ... I don't know what to expect ... Will he remember me in a year? I just don't know ... Anyhow, my prayers to you all ...
@@SibylleJohnson talk to his doctors. My dad is 90 years old and has all his marbles. His mobility is mostly affected and he’s on medication for that. He has mini strokes that he’s not affected by , and hes not in pain and is happy . That’s all I can wish for you and your husband.
Informing your son's teacher was absolutely the right thing to do. Your older son's school should also be aware of the situation. Many schools can provide far more support than you may be aware of.
Teacher here- thank you for telling the teacher. It's really important she knows and can provide support. The school counselor also might be able to help. You're doing great and your kids are lucky to have your support!
I was 26, and our daughter 3, when my husband was diagnosed with a fast-acting pancreatic cancer. WE had 3 weeks in which he was hospitalized before he died. Many years later, I became a hospice chaplain and witnessed how people can die relaxed and calm, surrounded by a team of caring, professional medical workers. AND I witnessed patients who appeared to get better and in fact were discharged for many months due to the unique care they received in hospice. I am glad you now have hospice to support you and your husband, as well as your child, and hope the transitioning issues will diminish as time goes forward. Your hospice team ---- be sure you get in touch with the chaplain and use that person as much as you can. You are very smart to use stuff from home to surround Tony with familiar items -- that helps, too. This may sound strange to say, but this time you have in the nursing home is so much more than we had, and I hope you do see it as such a gift. You may want to check how much hospice time your insurance will allow, and talk to the hospice people about doing some care while he's receiving therapy. Sending you blessings for maintaining your positive attitude, and for taking care of yourself when you can. Best wishes!
I was 66 and my hubby was 67 when he told me to take him to the ER Nov. 1st, 2020. He had x-rays which showed Metastasized Stage 4 Pancreatic cancer, He was given 3-6mos, but as a pastor, he was ready to go see Jesus and his mom. We arranged for hospice in the 3 days in the hospital we stayed there. The hospice nurse was wonderful getting his meds in order and all the medical stuff he may need. He was gone on Nov. 15th. It's been rough. We went through probate because we never finished the trust. We just got that resolved August 30th 2024, but we are trying to sell properties at the moment which will also be a nightmare. Luckily, for us, Medicare covered everything for the hospital and hospice. I put the cremation on our combo credit card under his name-I was the 2nd on the acct. I got the whole bill wiped since it was mainly his card.
@@nancyhinds3821 Pancreatic Cancer truly is a bastard. I lost my father to complications of it after battling Stage 4 for 2.75 years in late August, just shy of his 64th birthday. Condolences.
my husband Eddie had muscular dystrophy. and he ended up in nursing home.. he passed away Feb 7 years ago.. he was the best partner and i miss him everyday
Hi I lost my husband to cancer when our children were 10 & 13. It was only 6 weeks start to finish. 14 years on the pain is still there, but not as severe. Sending you prayers, love & light
You are not alone - my husband is a T-3 paraplegic, from a car accident 30 years ago. The first of this year he ended up hospitalized for 3 months after a pressure sore turned septic. He came home for 2 months, with home health - made another trip to the hospital for a week with two surgeries, then home again - but after two weeks the home health care discharged him "because he wasn't improving, and Medicare wouldn't cover home health any longer." They recommended hospice - which hurt, because we didn't feel his condition was terminal, so we declined and I've been doing the bedding changes, the bandage changes, etc. for the last couple of months. What makes it more difficult is that he lost so much muscle while he was hospitalized - he was very independent, and now he needs help to transfer to his chair, to get dressed, to do any of the things he used to be able to do . . . AND his hearing suddenly got bad, so that's another challenge. May God hear your prayers, and Jesus walk with you and your children through this journey!
Hi Epona; You might want to at least speak with Hospice. There are folks that have them and it doesn’t mean that death is imminent like before. As you know the high risk of sepsis and his history is enough to qualify-and they can provide equipment, meds, and care assistants to help with the baths, bed changes, etc. Nurses to pack wounds. There is no requirement for improvement outcomes. Sending love to your family.
I'm tired of us being victimized by these insurance companies. Treatments and procedures should be covered and allowed until you've recovered, you don't want to or you're dead.
I hear you. Some of the denial jerking around could come down to inadequate documentation. I had to get after resident doctors over and over again. For example, I've had to send my 50+-year-old bedbound son who is functionally quadrapalegic now to the ER....I would not have wanted to be be a certain resident's shoes after I reported that he wrote in my son's assessment, "Steady gait.". It is stupid mistakes like that that hold's up insurance some times.
my husband was sent home year and half ago with stage4 lung cancer and not being able to breath . we had 2 weeks left of his life . I brought him home and that night I called a ambulance and put him in hospise at our little hospital. It was the best answer I had because he was in so much pain. He died less than a week later, it was so sad but I had to let him go. And he was not in so much pain. Prayers for you
Big difference, huh?! My momma was sent to hospice care and she had cancer. Unfortunately she only made it through two days. Do people actually know the difference between hospice and therapy?!?! Big difference between them. Being offered a choice between therapy and hospice care is strange….
@@thesun-N-moon8885no, it’s what this country is coming to. If there is a reasonable assurance the person can get better and resume ADLs(activities of daily living) they will treat, if not, they cut you off. Dollars and cents.
This is my first time in your channel. I’m a registered nurse and I can tell that you’re an amazing wife and mom. May the Lord continue to strengthen and bless you ❤🙏🏾❤️
My daughter had 5yr old and a 12 yr old boys when she passed from cancer. Nothing worked. I understand your concern for your little one and other children. And I have some understanding of all you’re going through. We never know how strong we are until we fall apart and have to find a different strength to carry on in an alternative way. My heart hugs you and all your kids.
Jenny I have worked with caregivers for a number of years. First of all Tony is so lucky to have you as his advocate. You are a warrior. My thinking is that for caregivers it is important to plan for the worse.. Its already in the back of your mind, so making a plan actually helps alleviate some of that worry. I say to my caregivers.. think of all the what if scenerios - make a plan to deal with it- and let it go. On an other note. people think that hospice is giving up on our loved ones. However, that is not the case. Hospice gives the patient a coordination of care,- doctors, medications, social work, spiritual care etc. Always recognizing that a person may recover enough to move off of hospice- which happens. Hospice teams are incredible .. and they are a huge support for caregivers. Sending you hugs of support
Father, we pray over Tony. Bless him with your healing miracle. Lord, give Tony peace & comfort. Lord, you have shown us healing miracles that seemed impossible. Father, by the prayers of many, move this mountain. In the name of Jesus Christ, Amen!
Seeing my husband get weaker each day was the worst time of my life. My loving husband passed away December and I just cannot embrace the word 'widow". I miss him every minute of the day and I will look after him all over again😢
I’m trying to grasp her story but something in me does not understand…. Hospice and therapy are two HUG different things… I thought anyway.. sorry for your loss!!! I watched my momma pass and it was the most difficult thing…. I wish we had options of therapy or hospice for her… 😢
Oh my dear, I watched my husband slowly decline over the past 10 years due to Parkinson’s disease. But this last year was the hardest, inAug 2023 he had to go into a hospice home. I could not physically take care of him. They took very good care of him, we paid for this, insurance wouldn’t cover this. My dear hubby of 57 years passed this June. I understand exactly how you feel about the word “ widow” either. I don’t know how to live without him.
@bakokat6982 so sorry to hear about your loss too. I am really struggling and people think a person must just 'shake it off' and carry on as if nothing happened.
Thank you for sharing your story! So glad to hear your husband is settling in. Hospice is misunderstood, but a huge benefit for the patient and their family. My mom was in hospice care at home for 2 years and we were so thankful to the amazing hospice care givers.
@@thesun-N-moon8885nurse here…hospice provides therapy to patients. Hospice is no longer just keeping patients comfortable until they die. Some people come off hospice.
You are such a blessing. Our family went mom, Dad, and 6 kids. Our Mom had arthritis for several decades. Mom lived in much pain in the closing Days of her life. I have a diagnoses that Hurts my memory. I will be praying for your and your family. With love , Kay
I was with my baby sister as she was taking her last journey in life. We made wonderful memories with the time she had left ,I did find myself greaving while I was looking after her and when the day came and she got her wings I did not cry I was so happy that she had a peaceful passing that she wanted her way
I work in skilled nursing. It is not easy when you have to handle all of this on your own. Sounds like you have found a wonderful place! Some facilities are not as great! Give yourself some grace! Remember it is quality not quantity! I am glad that your family is there for you! Blessings to you and the entire family!
As the mother with a daughter with a C5 spinal cord injury I can agree with you that Jesus will give you peace and joy and walk with you every day, life doesn't have to be perfect to be good.
My brother-law has muscular dystrophy with ongoing problems. My sister works FT. They are in their 70’s now w/ grown kids. What you are doing for your husband and family is so, I do t know what the right words is, but it’s wonderful! Praying for Tony and you now and your young son now.
Mercy is a gift from god. Bedsores, struggling to breath, etc etc is hard.suffering is not fair. Pray for mercy...the lord gives, and the lord takes away.we never die, only the body does. Prayers for you and your family on this journey, love will carry us all through.
As a homecare nurse. I like to express what amazing women your are. I see you as advocate for your husband, a wonderful mother. One of the most important things is to take care of yourself. Gets as much support as you can, from daycare for your children, your church. One of the things l see is how burnout caregivers get. Wishing you and your family all the best in this difficult time. ❤
In my family we have 2 people in Nursing Homes. One for Parkinsons. The other for bone cancer. I was a caregiver for my mom after multiple strokes. You are not alone. My heart aches for you. Sending all love and prayers your way.
I work in palliative care and hospice. It does seem like they were kind in talking to you. It’s often much more difficult with younger patients for not only you as the family but us as well. It’s not about us, but I just want you to know that if you’ve got a good team they do care ❤. They do want Tony to live and do well. We can always have hope. Some people do improve too with hospice because of the extra care. But if you had not prepared for the worst, and the worst happened, it’s much harder.
I am so sorry. When we had to put a family member into a nursing home it gave me great guilt and sadness. Do not feel guilty a nursing home provides safety for you and him and will improve his and your quality of time together and is a good thing. So sorry hugs.
I completely understand the decision for nursing home and hospice. My husband of 25 years was in the nursing home for 10 years with Huntington’s Chorea and passed from an infection. I married again and we were together for 8 years he passed during COVID on hospice after being there for a month due to liver failure and complications of congestive heart failure. I couldn’t be with him when he took his last breath due to the lockdown. I promised he wouldn’t be alone and I was unable to be there due to the lockdown. I begged to see him the day before but was denied. The next day he passed they allowed me to be with him for a couple of hours after he passed. It is heartbreaking to see them like this. I just hold on to they are in no pain and happy again. I know this is long but wanted to share this. I pray for your family. Make as many memories as you can that’s the best comfort you can have. Stay strong
I am sorry they were that cruel and heartless! I pray that he and you both will see each other again in Heaven with Jesus, as that is the only thing we can hang on to!
My mom had MS. Luckily she was never sick. I was her full-time caregiver and was able to work from her house since covid. She survived lung and breast cancer. She lived until 82. I'm still struggling with her loss 2 yrs ago. Sending prayers. Mom took care of my dad, then years later, me and my brother took care of my mom. I never had to deal with facilities. I was very fortunate to be able to work from home. Mom died from her MS affecting her lungs muscles in the end. She just couldn't get rid of co2. But she never suffered, just went to sleep in her bed. I totally understand. Moms dr put her on hospice but that was only 3 days. So sorry for you. Been through it twice with both parents.
As a former kinder teacher, thank you for sharing with your son's teacher. It is so important for you and the teacher to communicate for your son's well being and positive school experience. She will be a constant person in your son's life this school year, and that is great for him!! They will have a bond and he will know he can talk with her too should he feel he needs to!
My DIL had ALS and I know exactly what you are saying. The day she was diagnosed she was given 1 year. She had 6 children. She lived 4.5 years and they were hard years. Hugs to you. You are doing such a great job. Keeping the new normal for the kids is so important.
Jenny, this is my first time to yours and Tony's channel and I just want to tell you that your message of hope and hanging on through turmoil is so needed right now in our world. You have a lot on your plate, but you understand that Tony does too. He is so blessed to have such a sweet wife who is there for him and to fight for him just to make everything comfortable for him and the rest of your family as well. Tony is so blessed also for such a great care team! May God bless you all and give you strength🙏 ❤Claire (Bobby's wife)
I understand it is sad to talk about the end of life, but as a caregiver it is what is needed in the event that they pass they would know what to do. Living wills are the best thing to have. I advocate for everyone to have one. This way your loved ones do not have to make the hard decisions.
Listen you speak, I feel ❤ God is walking with you in this journey. He will not leave nor forsake you for his mercies are new every morning. God bless you and your family.
God decides and as long as Tony keeps fighting I say do not give up!It is not over till it is over.Stay strong and positive,whatever happens give it your all.God Bless your family 🎉
As a nurse you need to realize that with chronic debilitating illness sometimes you need to plan for the worst and hope for the best. His doctors were very compassionate and caring. Your husband deserves to live and he deserves to die with dignity. At some point if medical interventions do more harm it’s time for the conversation. It’s hard but glad you had such compassionate doctors and your parents to help you through this. Take care of yourself and your family.
This is the first time I watch you. .What a brave woman you are your husband is lucky to have you. I am so grateful full here in England we have free medical help..called the national health.service. Love from England ❤️
The care system in England is so progressive . My cousin was in hospice care, in a wonderful facility. My Mom was on hospice in 1990 at home. It was a terrible experience as they did not keep my mother comfortable. The nurses were very mean, and I felt I would never deal with them again. Life has its twists and my spouse had the navigator(early care) for dementia. Not 100% perfect experience, but parts of it were wonderful. It was difficult to navigate medicaid, Medicare, Passport help, hospice and family issues! I always say the only thing I would change is I would have left my job earlier!!! It was wonderful having him end his journey at home 🏡
You're the super hero!! What a wonderful wife and mother you are! Your husband is so fortunate to have you in his corner! May God Bless your kind heart!
You're a heroic woman. Seriously. This is the first time I've ever seen one of your videos, and I can see this to be truth. Women in this day and age are so self-indulgent, & wrapped up in what they believe they, "deserve", it's almost impossible to remember about all the incredibly good women out there, who understand what wedding vows still mean. No man in this world, could ask for a better wife, if God told them they could "special order" one, just this once. This, I believe, is why you are finding avenues opening up for you, to help ease your burden, even if just a little. Because people like yourself? Are the reason the word, "DESERVE", exists. God has his thought upon your family, even if only for brief moments, and I hope it allows you to continue working through this path your life has taken, to whatever ending God has in-store. Your heart is true, and whether you know it or not, you're providing strength to others, even when you feel at your weakest. God Speed to you and your family.
Your video just popped up on my TH-cam. Jenny, you are such a strong person. It's clear to me that God's plan for you was to be Tony's wife and advocate and a great mom to Alex. You and your family will be in my prayers. So happy to know you are a believer🙏😊👍💐🙏
Losing a child is just 'wrong'. My niece was at a school for those with physical challenges, a significant number with Duchenne's and I was so sad for the pupils as they had at least 1 to 3 memorials for classmates who had been fetched by God.
Having gone through three years of my husband ‘s Illness and being his sole caretaker until his passing my heart goes out to you. It is so difficult to watch someone you love suffer and struggle.You are doing such an amazing job getting the best care possible and keeping his mental health intact by bringing some normalcy in his difficult journey.Tony is very Blessed that he has you by his side..Happy to know you got your parents nearby for support.🙏🏻 That Tony continues to improve 💞
You just appeared i my feed and hour story brought me ack memories of what my husband and i went through. He had Parkinsons disease. He spent the last 2 years of his life in a nursing home, hospital forced. Since he passed i got sick and again, hospital forced am now in a nursing home. My prayers will be with you.
As a retired Kindergarten teacher you did the right thing in communicating. I always appreciated when parents let me know any life events or concerns so we could together support the child.
I am so sorry about your husband .. However I am glad he is receiving 100 days of skilled care... sounds like he is in a good hospice facility I work in a long-term skilled facility and have been a CNA for over 20 yrs in different facilities.. I have seen so much that I truly despise health insurance companies.. No human should be treated the way these health insurance companies treat people.. It angers me more than words can say. They do NOT care about the person or the situation they only care how much money is being spent ....Period!!
I had two sons with muscular dystrophy. Tony is at the end of his journey. The only thing the doctors can do is keep him comfortable. The procedures will not help or prolong his life. Be there with him until his last breath. Let him know that it's all right for him to let go when he's tired. You will keep his memory alive for your son. It will be the hardest thing you ever do but you will get through it.
how is this helpful or appropriate as a public post? Even as a DM, way too personal unless you're close to her. Points for her to make, not an internet stranger. ouf.
You've been there, you are the best one to speak to this from first hand personal experience. If a person puts their personal life out here, they have to expect personal experiences to speak up. Blessing for how much you care, so much to take the time to come on here and speak and try to help!
How wonderful!!! You've done such an awesome job of making his "room" a "home"! What a blessing that a lot of the weight has been lifted off your shoulders. I am a retired hospice care provider. I learned so much from these angels. I took care of a woman for almost 2 years on hospice. Her R.N. said she would never take her off of hospice, because she would never improve. She was in her 80's, but, still it was a blessing. We had musicians come in from time to time to perform. Guitarist, harpist. It was amazing!!! God bless you and your family!!! Love all around. It's something we all can give/share!!!
You are a very loving and thoughtful wife and mother. May God bless you with much fortitude and strength and bless your husband with improved health as deems best. Best wishes to the entire family. You and your family will continue to be in my prayers. Your words to your husband are very uplifting and encouraging. Blessings!
My heart goes out to your family. The constant stress takes a toll on all of you. It is not only your husband who needs care and love. One day at a time and realize your limits. Find a small beauty each day. A smile. A cloud. Favorite food. A blade of grass. A tree. Amid constant stress and worry, these small moments make a difference. Give thanks for one another. You are never alone and be blessed by even strangers who care.
The sickness sucks and I can relate, I lost my daughter four years ago due to MS. She had it for 29 years and I also had to put her in care. Take it day by day you will get strenght trhough God
MS is a terribly progressive disease. I was 69 when my husband was diagnosed with Stage IV lung cancer. I advocated as much as I could for everything but knew there was no recovering from it. I cared for him at home for 6 months until he passed. Although I knew it was hopeless, I had to keep it all inside. The last month or so, he just kept saying he wanted it to be over. He knew. I knew. But he was tired of the treatments, the doctors and the pain. I fully understood. I never tried to delude myself but I wanted to keep him at home so he could feel normalcy. Watching the person you love most in the world slowly leave you is the worst thing I have ever been through. You have your children and your faith and your family to get you through. Just enjoy every day you have with Tony. Having doctors and staff to come to him so he doesn't have to keep going out or being transported is probably a big relief for him which is why he may feel better. People who are ill get tired of being moved, poked and prodded. Glad he has staff around him whom he likes and people are not constantly changing. All of these things give him a lift. You are doing all you can and I am sure he appreciates and loves you with all his heart. Blessings to you, Tony, and your family. 💖
Wow, I appreciated all that you shared. I'm new to your channel. I have a rare form of muscular dystrophy that mostly affects my ability to swallow, tongue weakness and dropping eyelids, but lately it's causing a lot of leg weakness and hip pain. I'll be praying for you Tony!!
my son has Duchenne muscular dystrophy, it's a horrid disease, my son gets sick a lot too. Doctors tried pull same thing about my son, I let them once and he got better for 16months, then they tried again, I told them no as long he gets better I am going fight for my son. Some doctors dont understand we know all this. If need someone to talk to message me :) I been fighting for my son years.
Your video also just popped up in my feed. I’ve literally watched your channel grow in the last hour. It was in the 6,000 range and now it’s over 7,000. Everyone please subscribe and let’s help this precious family. ❤
We went thru a condensed version of dealing with insurance companies and assisted living and rehab centers over a four month period with my MIL. It was terrible due to my emotional problems, difficulty communicating with her, constantly having to jump thru hoops, living with her for a couple months where we had no decent sleeping conditions, etc. Praise God she did pass away and no longer had to suffer agonizing pain. I have a hard time since then handling my and my husband's medical needs. Between our experience and covid, I would just as well never see another medical facility.
Hi Jenny, I just want to say this was heartbreaking for me to watch this video as I have been where you are before.My husband of 40 years had multiple sclerosis and I ended up taking care of him for the last three years of his life watching him decline. Being a caretaker is the hardest job there ever is. My heart goes out to you sending healing thoughts your way.
Hi Jenny, I hope you guys are doing well as far as possible... Hospice is not giving up. Hospice is fighting for a good life while it lasts. Of course is hard to face the hardship of a serious illness, but in hospice you will have a chance to be happy and get support. It can last years and you can reach a point where you are discharged, don't worry. It's not giving up. His life will be better with palliative care (yours and your family's too). Use all the resources and help they offer you, you deserve it. We will keep praying for you! Please let us know of we can help you with anything, we are your village, we are here for you guys ❤
Just seeing your videos. Nurse here… I’m starting right now to pray for you all on this difficult medical journey. May You feel the healing power of Jesus. Hugs from Arkansas.
You make a plan so you can enjoy the time you have left. If they left you unaware his end of life could be much more painful. I did hospice for a long time and the worst cases I saw wee when the patients family couldn’t accept the diagnosis. They would refuse comfort meds and they’d want the patient doing uncomfortable things. And the patient would often not be peaceful because they were so worried about the family they are leaving. I think the worst part was the pain though. I really struggle to understand families who refuse pain and anxiety meds for their dying family. I’m glad you have a plan and are such a strong advocate for him. Love him and spend as much time with him as possible. God bless you
Hi Jenny, I just came across your channel this evening. I am so sorry for all you and Tony are going through. My husband was born with the Huntington’s Disease gene, and began with symptoms 20 years ago. I am a Registered Nurse, so as he needed more care, I retired early to take care of him. My husband is a veteran, with this disease, there is a lot of paranoia along with the disability, so the VA hospital was all he would trust. I tried everything, I read everything, I was ready to try a swallowing study, but when they spoke those shocking words, “it’s time you look into hospice”, I felt like I was hit by a ton of bricks. I am sorry you and your family are so young to deal with all of this, I just wanted to let you know that hospice has been amazing. I will pray for you and your family, you have a lot on your plate! Make sure you get rest as well! I pray my husband can find peace, he is so restless, but I know he is a believer🙏✝️❤️
The John Grisham book The Client reflects these insurance nightmares. In the trial it is discovered that the company’s beginning policy is “deny all claims”. They want to hold out until the family gives up. So sad. So happy you have had the strength to fight. God bless you all.
Just found your video. My thoughts, prayers and strength are with you. My husband passed 3 years ago after me being being his care taker for 10 years. You are an “ Angel” getting him through this journey. Remember to take it a day at a time and “ breath”. 💕
I admire you for not giving up on being your husbands advocate. I have been on the end of being an advocate for a family member during a long stay in a hospital setting for 7 months and at the same time being an employee of a skilled nursing home and long term care facility. At the hospital being the advocate every few days fighting for continued care and then getting care at a specialty hospital for the last 4 months of the 7 months, then getting the right care at the nursing facility. So many emotions and so much work to be done when something like this happens, having that great support team makes a difference. I wish you and your family all of the best, praying that your needs are met and that you get to spend quality time with your husband and your children.
Last year I had to rush my husband to emergency hospital because he had been diagnosed with heart failure four years prior and was on medication and he needed heart surgery but with COVID and unable access to doctors appointments he had started to have one symptoms that resulted in him having a fast heartbeat which he had to have his heart stopped and shocked back to normal rhythm and he never recovered from it and gradually was given more medication and blood tests regularly but because was 68 years old at the time of diagnosis they assumed he had retired from work he never mentioned he was still working full time and a precision engineer of 52, service and he was dedicated to his work place but he was struggling with heart failure that eventually he was made redundant at the age of 69 years and he was 71 years old when he died last year but he was rushed to hospital with symptoms unrelated to his heart failure and within forty eight hours he was dead and he died from acute pancreatitis and liver and Gaul Bladder inflammation and kidney failure and he was put on dialysis a couple hours before he died and the doctors wanted to put him in a induced coma and on a ventilator because they said he was going to crash from heart failure and they wanted to shock his heart back and place him on a ventilator but he didn’t want it but they said they couldn’t understand him and they couldn’t take my decision and said it wasn’t my call to make. So they allowed me in the room while the crash team were standing by me and he asked where I had been and I replied discussing your treatment with that he said what treatment I said you’re dying and ready to crash your heart is failing so they here to shock you back to place you in a induced coma and ventilator and you will be on dialysis for life support and he said No No No and the other doctors in the room said he made it clear and they understood his wishes. He died 7 minutes later. Some times I believe doctors prolonging the pain and suffering of people who have no hope of survival and prolonging their life is not good for them and their family members life is not the length of days but rather the quality of life is the most importance to the world is making more money keeping people alive and then people are fearful of death and some people are desperate to cling on to life to live and to understand the spirit within their bodies and their eternal existence is not just this three dimensional reality of this world and the thread of fear of death enslave us all.
You are such a precious soul. I cried hearing you give encouraging words. I struggle with my mental health and your words helped me. Even with all you are going through, you are passing along comfort to others. I am in awe of you, sister in Christ! Thank you for sharing and being you. I hope to meet you in and Tony one day in Heaven
I was a hospice nurse for Marie Curie in the uk, I worked in the hospice & in peoples own homes. The hospice teams are brilliant and if they can get patients to a place where they can go home even just for a few weeks it will make a world of difference.with the hospice staff it’s not just the patient who is cared for but the whole family.God bless you all Thank god the uk has the NHS, I’ve recently helped a friend who’s brother past away in America a million dollar insurance policy may not be enough ,they have taken his pension House & she has been told if that doesn’t cover it they may come to my friend for the rest. Very upsetting for everyone.
I am going through a similar journey as Tony in trying to get care for my multiple chronic illnesses. ❤ Thanks for sharing your journey 🙏🏼 and continued prayers.
Jenny and Tony, I am new to your channel. Thankful for your trust in Jesus. Thankful for the doors God has opened, like a facility to be in, a new mattress, Arbies sandwiches, milkshakes, a caring staff, and being able to set up and decorate Tony's room to feel more comfortable for Tony and your son. I will be listening for the next one.
Jenny your a wonderful wife and advocate. I just saw your channel. My heart goes out to you and Tony and the family. Im going through alot of health challenges with myself and family.Its very sad.Prayers to Tony . I pray he is not in pain.The insurance challenges are terrible.Dont be afraid of crying . Its your right!!!!!
First time listener. Thank you so much for explaining this life story so well. You seem like an amazing person that is doing very well at keeping it 'all together' despite everything that is going on. May God bless you, encourage you and give you strength (to your whole family)!
I know you mean this in a kind and positive way but I also lived this journey a few years ago and people told me the same thing. I never let on but I actually didn't like hearing that because I felt like we were just living life and doing what ever had to be done. And I think most people in that situation would do the same. Didn't mean to bring you down but just wanted to put that out there in case there are others who feel that way too.
Coming from a mom and caregiver whose daughter, age 31 was lost to ALS after 5 yrs; palliative care is helpful, and hospice care is a great help (she was on this for three years). Be advised the hospice process tends to liberally increase pain meds and these with “comfort” meds can contribute to diaphragm weakness/ dependency. (ALS patients often deal with these same conditions but w/o hope.) What does Tony want to do? Where there is hope of life there is the possibility for more time. Hallelujah for the grace of God on your lives. Praying for you for wisdom healing, and peace. 🙏🏻
You look about the same age as me and I'm going through a lesser ailment with my husband. I'm about at my wits end so I admire your strength. Just know you are doing the best you can with the information you have. It's a lonely road but you are a beautiful person.
I understand what you're going through I'm a caregiver for for my husband❤ he's doing lot better he's able to set up move around in his riding wheelchair❤ he had a total of five Strokes from 2017 to 2019 I myself I pray a lot and God Is A Healer❤❤❤
I'm so sorry to learn you tow are going through all this that resonates all to well with my family. Thank you for sharing. My 51-year-old-son has Advanced Late Stage MS and my brain at 74 is so tired.
I DONT KNOW WHAT YOUR SUPPORT SYSTEM IS LIKE MINE WAS REALLY GOOD! I was given the same options for my husband they wanted to put him in a SNF he was very ill and we knew it. .....I am in healthcare and I am a Healthcare Analyst, recovery is more than meds it is mental well being, your mind is powerful when it comes to recovery or a quality of remaining life, that is why I was stern and said we are taking my husband home and it made an amazing difference in my husbands outlook, he did fully recover and I am not sure he would have in the SNF. My husband passed away about 4 years later due to his chronic illness and Covid, but we had 4 good years with him, I would not have traded those last years living with him for the world.
God Bless You and your family. This is the first time I have watched your stream. I lost my husband in 2013. He had abnormal Dementia from a fall from a ladder and fluid on the brain after 3 brain surgeries. Over a 5 or 6 year period the dementia increased and no diagnosis of Hydrocephalus was until about 6 months before we lost him. It was a very difficult period for all of us, but in the end we had to give him grace and understand that he would be at peace without pain. I am thankful that I had 31 years with him and we had such a really great life.
Thank you for being here today! We appreciate your love and support more than you know. ❤️❤️
❤
Prayers love and my heart just goes to your family and you wow you have been through so much I have been through some horrible health n insurance loops to and I hope things get better and maybe 🙏🏿 a miracle or the best he can be for his condition
❤ 🙏🏻
Thank you for sharing. Since I have fshd muscular dystrophy also it's been educational following yall.
I love his room and your sons hang out spot with dad. I know that boost Tony's will to keep going. With fshd and other autoimmune issues I have , hospital stays really feel lonely. So, you did an amazing job!!!!!
THis brings back memories. My husband was a bedridden "zebra" case for 5 years and bedridden. No less than 12 doctors of many specialties (multiple organ failures) in 2010 said to prepare for end of life. He wanted to keep fighting, despite being 98 lbs (down from 160) and extremely weak. I brought him home and did a multitude of alternative things (it was all we had left since they had given up on him) and slowly slowly slowly, I started noticing tiny signs he was getting better, one cell at a time. Doctors and some friends said I was cruel to keep him alive and should let go. He didn't want to go (I asked him every day) so I supported that. It took 4 years and life returned to him. He is now 120 lbs and very active, back to taking care of our farm and riding his tractor and making people in town smile again (he's very extroverted, lol). You just never know. Doctors never know for sure. Even hospice was not on our side... they wanted to drug him into a stupor which would've shut his heart down. We chased them all away and with the love and support of family and a few friends, and a LOT of doing things doctors rejected, he's still here.
I’m so happy for your husband and for you❤️
❤😊
@horsedesigns Good on you! Our bodies are stronger and more able to heal than most of us know. Only a rare few know about the power of natural healing methods, prayer, and complementary medicine. I have had similar experiences of witnessing and supporting "miraculous" healing in pets, wild animals, myself, family members, friends and neighbors.Most important is the ability to trust and follow your own intuition, instincts and inner knowledge! Your husband is a very lucky fellow to have you supporting!!
@jennifera4350 Are you one of the few that can heal every ailment
@@sarahann530 I didn’t heal anything. I just didn’t give up when the doctors did and lost a lot of sleep studying everything I could, most things that were over my head trying to figure out what his body may need. sometimes it works and sometimes it doesn’t but I just wanted to share so that people follow their instinct if they think there’s more that might be helpful than what they are being told.
Muscular dystrophy kills. My cousin had it. 70 years ago they said he wouldn’t live past 12. Then it was 18. Then it was 22. He had excellent personal care from his wife. He lived until he was 55! Fathered a child. Got to see her married. I hope you get a break. God bless.
Hopefully she gets genetic counselling if she wants a child.
@@nicolad8822 Good idea just in case because MD is inherited through the mother. But if H-E had it and fathered a daughter, the good thing is the daughter probably doesn't have the gene....if I understand it right. I had 2 brothers-in-laws with MD, both died in their 20's & 30's, neither married and neither had children...my MIL didn't know she had it to pass on.
Now that’s what I call a love of a wife for her husband.
When my husband was 3 weeks away from death, he wrote his kids a letter telling them what a wonder wife I had been. I kept the letter and framed it. That letter was truly a gift to me and has blessed me so much during my years of "widowhood".
Thinking of you from Texas.
What an awesome set up!!!! And that sounds like a really really unique, good nursing home...wow!!! I am so impressed ...and proud of the people contributing to all of his care...and you are an awesome wife and person!! Thank you for sharing part of your families story❤❤❤
I had to make the difficult decision to put my husband in a nursing home. We (doctors, nurses and myself and kids told him he was in rehab). February 2022 he had his right leg amputated above the knee due to complications from diabetes. He was exposed to Agent Orange in Vietnam. The symptoms didn’t start showing up until around 2008 with diabetes being the first. Then he started having heart problems and then dementia. Of all I think dementia was the worst. It caused him to not take his medications ie insulin and blood pressure medication like he should. I was his total caregiver for him for the last two years until it was just too much for me. He was 77 and I am 73. He was only in the nursing home (which the VA was paying for because he was 80% service connected in his disability). He developed a severe UTI before going to the nursing home. It was the. That I knew I couldn’t continue taking care of him. He didn’t want to be on machines and didn’t want to go to a nursing home. I felt so guilty placing him in the nursing home. He was there a week before the UTI got so bad. They also had determined he had had a minor stroke and more than likely prostate cancer and bladder cancer (which was also a symptom of his Agent Orange exposure. In the end the infection from the UTI went to his heart. He passed away in May. Knowing that he didn’t want to be on machines to keep him alive I agreed to just keeping him comfortable. I felt so guilty for making that decision even though I knew it was what he wanted. It’s been 5 months since he passed and I’m taking it one day at a time. We were married 51 1/2 years. What helped us through all of this was the VA. Yes I know I’ve heard the horror stories about the VA but for us they were amazing.
Sounds very much like what my dad went through. Just know that even the decision was hard, it was the most loving thing you could've done for your husband. Blessings to you!
God bless you, mam.❤
Honestly I do not believe it is ever easy for us to make these massive decisions for those we love. Sorry for your loss. I lost my mama in March. They had put her on a vent to help her breathing, so hot shot wanna be doctor kept demanding she be taken off. She had pneumonia and stage 4 COPD. They waited until I had to make an emergency run home to remove her from the vent. I walked in to seeing her struggle to breathe. She made the call then not to be on any more machines and kept comfortable. They kept asking me to talk to her. I stood the ground for her.
@@crisyoung4063😢😢😢❤
May God bless all of you and bring comfort. 💜🌷
My dad passed away at 86 several months ago. About a week after his passing I was having dinner with Mom. She had just gone through some grief counseling. She learned that the reason that dad was behaving the way he had during the last few weeks of his life was because his body was preparing to die. She told me that if she had known she would have done some things differently. Praying for you and your family.
I hope she knows that she did the absolute best with the information she had and that your dad was blessed to have her. Give her an extra hug from this stranger ❤
Hi Jenny. There’s a great hospice nurse on TH-cam and her channel is called HOSPICE NURSE JULIE. She’s excellent for anyone with elderly or infirm family members. I care for my 90 yr old dad who has vascular dementia and I’ve gotten a lot of help from her channel. I wish your whole family the best. 🙏🏻👍
I love hospice nurse Julie! She’s a great resource 🩷
I followed Julie for 19 months while taking care of my Mother at home by myself under Hosparus care.
My husband also was diagnosed with vascular dementia ... I don't know what to expect ... Will he remember me in a year? I just don't know ... Anyhow, my prayers to you all ...
@@SibylleJohnson talk to his doctors. My dad is 90 years old and has all his marbles. His mobility is mostly affected and he’s on medication for that. He has mini strokes that he’s not affected by , and hes not in pain and is happy . That’s all I can wish for you and your husband.
I love Nurse Julie! She’s amazing!
Informing your son's teacher was absolutely the right thing to do. Your older son's school should also be aware of the situation. Many schools can provide far more support than you may be aware of.
💯 they really will be prepared to be supportive if your children are having a bad day.
Teacher here- thank you for telling the teacher. It's really important she knows and can provide support. The school counselor also might be able to help. You're doing great and your kids are lucky to have your support!
I was 26, and our daughter 3, when my husband was diagnosed with a fast-acting pancreatic cancer. WE had 3 weeks in which he was hospitalized before he died. Many years later, I became a hospice chaplain and witnessed how people can die relaxed and calm, surrounded by a team of caring, professional medical workers. AND I witnessed patients who appeared to get better and in fact were discharged for many months due to the unique care they received in hospice. I am glad you now have hospice to support you and your husband, as well as your child, and hope the transitioning issues will diminish as time goes forward. Your hospice team ---- be sure you get in touch with the chaplain and use that person as much as you can. You are very smart to use stuff from home to surround Tony with familiar items -- that helps, too. This may sound strange to say, but this time you have in the nursing home is so much more than we had, and I hope you do see it as such a gift. You may want to check how much hospice time your insurance will allow, and talk to the hospice people about doing some care while he's receiving therapy. Sending you blessings for maintaining your positive attitude, and for taking care of yourself when you can. Best wishes!
Thank you.
I was 66 and my hubby was 67 when he told me to take him to the ER Nov. 1st, 2020. He had x-rays which showed Metastasized Stage 4 Pancreatic cancer, He was given 3-6mos, but as a pastor, he was ready to go see Jesus and his mom. We arranged for hospice in the 3 days in the hospital we stayed there. The hospice nurse was wonderful getting his meds in order and all the medical stuff he may need. He was gone on Nov. 15th. It's been rough. We went through probate because we never finished the trust. We just got that resolved August 30th 2024, but we are trying to sell properties at the moment which will also be a nightmare. Luckily, for us, Medicare covered everything for the hospital and hospice. I put the cremation on our combo credit card under his name-I was the 2nd on the acct. I got the whole bill wiped since it was mainly his card.
@@nancyhinds3821 Pancreatic Cancer truly is a bastard. I lost my father to complications of it after battling Stage 4 for 2.75 years in late August, just shy of his 64th birthday. Condolences.
As a nurse, my most satisfying work was an in house Hospice, the care is truly holistic and very supportive of the family as well as the patient.
I can't believe that someone who has it so much harder than I do, actually raised my day and my spirits. Bless you.
my husband Eddie had muscular dystrophy. and he ended up in nursing
home.. he passed away Feb 7 years ago.. he was the best partner and i miss him everyday
🙏💔🙏
I'm so sorry for you loss! I bet he's watching over you right now and free from any pain
Hi I lost my husband to cancer when our children were 10 & 13. It was only 6 weeks start to finish. 14 years on the pain is still there, but not as severe. Sending you prayers, love & light
You are not alone - my husband is a T-3 paraplegic, from a car accident 30 years ago. The first of this year he ended up hospitalized for 3 months after a pressure sore turned septic. He came home for 2 months, with home health - made another trip to the hospital for a week with two surgeries, then home again - but after two weeks the home health care discharged him "because he wasn't improving, and Medicare wouldn't cover home health any longer." They recommended hospice - which hurt, because we didn't feel his condition was terminal, so we declined and I've been doing the bedding changes, the bandage changes, etc. for the last couple of months. What makes it more difficult is that he lost so much muscle while he was hospitalized - he was very independent, and now he needs help to transfer to his chair, to get dressed, to do any of the things he used to be able to do . . . AND his hearing suddenly got bad, so that's another challenge. May God hear your prayers, and Jesus walk with you and your children through this journey!
I pray 🙏🙏 for y'all family, God Bless you Always
Hopefully when Kamala Harris becomes president, you will be able to benefit from new funding for home care services. God bless you.
Praying for you and your husband ❤
Please check more into hospice. One no longer need be considered terminal to receive hospice services. Many supplies and services are covered.
Hi Epona;
You might want to at least speak with Hospice. There are folks that have them and it doesn’t mean that death is imminent like before.
As you know the high risk of sepsis and his history is enough to qualify-and they can provide equipment, meds, and care assistants to help with the baths, bed changes, etc. Nurses to pack wounds. There is no requirement for improvement outcomes.
Sending love to your family.
I'm tired of us being victimized by these insurance companies. Treatments and procedures should be covered and allowed until you've recovered, you don't want to or you're dead.
I hear you.
Some of the denial jerking around could come down to inadequate documentation. I had to get after resident doctors over and over again.
For example, I've had to send my 50+-year-old bedbound son who is functionally quadrapalegic now to the ER....I would not have wanted to be be a certain resident's shoes after I reported that he wrote in my son's assessment, "Steady gait.". It is stupid mistakes like that that hold's up insurance some times.
The American health system is a mystery to me 😶
my husband was sent home year and half ago with stage4 lung cancer and not being able to breath . we had 2 weeks left of his life . I brought him home and that night I called a ambulance and put him in hospise at our little hospital. It was the best answer I had because he was in so much pain. He died less than a week later, it was so sad but I had to let him go. And he was not in so much pain. Prayers for you
Big difference, huh?! My momma was sent to hospice care and she had cancer. Unfortunately she only made it through two days. Do people actually know the difference between hospice and therapy?!?! Big difference between them. Being offered a choice between therapy and hospice care is strange….
@@thesun-N-moon8885no, it’s what this country is coming to. If there is a reasonable assurance the person can get better and resume ADLs(activities of daily living) they will treat, if not, they cut you off. Dollars and cents.
Just found your channel, May the Lord bless you and your family!
I'm so sorry for your loss and I feel your pain i lost my dad to cancer and he passed away in May 31,2017
Hospice means you're breaking free from the traditional medical system and heading toward heaven. It's a great relief for patient and family.
This is my first time in your channel. I’m a registered nurse and I can tell that you’re an amazing wife and mom. May the Lord continue to strengthen and bless you ❤🙏🏾❤️
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My daughter had 5yr old and a 12 yr old boys when she passed from cancer. Nothing worked. I understand your concern for your little one and other children. And I have some understanding of all you’re going through. We never know how strong we are until we fall apart and have to find a different strength to carry on in an alternative way. My heart hugs you and all your kids.
Jenny I have worked with caregivers for a number of years. First of all Tony is so lucky to have you as his advocate. You are a warrior. My thinking is that for caregivers it is important to plan for the worse.. Its already in the back of your mind, so making a plan actually helps alleviate some of that worry. I say to my caregivers.. think of all the what if scenerios - make a plan to deal with it- and let it go. On an other note. people think that hospice is giving up on our loved ones. However, that is not the case. Hospice gives the patient a coordination of care,- doctors, medications, social work, spiritual care etc. Always recognizing that a person may recover enough to move off of hospice- which happens. Hospice teams are incredible .. and they are a huge support for caregivers. Sending you hugs of support
❤❤
My step sister moved in and out of hospice twice and is well and thriving. Hospice was a godsend for us during her illness
Keep fighting for your husband.
Father, we pray over Tony. Bless him with your healing miracle. Lord, give Tony peace & comfort. Lord, you have shown us healing miracles that seemed impossible. Father, by the prayers of many, move this mountain. In the name of Jesus Christ, Amen!
Amen
Amen in Jesus name❤
In Jesus name be healed Tony!
Amen! God is good! Praying for you from New Zealand
Amen❤
Seeing my husband get weaker each day was the worst time of my life. My loving husband passed away December and I just cannot embrace the word 'widow". I miss him every minute of the day and I will look after him all over again😢
I’m trying to grasp her story but something in me does not understand…. Hospice and therapy are two HUG different things… I thought anyway.. sorry for your loss!!! I watched my momma pass and it was the most difficult thing…. I wish we had options of therapy or hospice for her… 😢
Oh my dear, I watched my husband slowly decline over the past 10 years due to Parkinson’s disease. But this last year was the hardest, inAug 2023 he had to go into a hospice home. I could not physically take care of him. They took very good care of him, we paid for this, insurance wouldn’t cover this.
My dear hubby of 57 years passed this June. I understand exactly how you feel about the word “ widow” either. I don’t know how to live without him.
@bakokat6982 so sorry to hear about your loss too. I am really struggling and people think a person must just 'shake it off' and carry on as if nothing happened.
Thank you for sharing your story! So glad to hear your husband is settling in. Hospice is misunderstood, but a huge benefit for the patient and their family. My mom was in hospice care at home for 2 years and we were so thankful to the amazing hospice care givers.
@@thesun-N-moon8885nurse here…hospice provides therapy to patients. Hospice is no longer just keeping patients comfortable until they die. Some people come off hospice.
You are a beautiful wife, mother, human. Thank you for sharing your story.
You are such a blessing.
Our family went mom, Dad, and 6 kids.
Our Mom had arthritis for several decades.
Mom lived in much pain in the closing
Days of her life. I have a diagnoses that
Hurts my memory. I will be praying for your
and your family. With love , Kay
Beautiful wife dumping him in nursing home
U just killed him
His body is sick he lacks help
The right foods and vits together with oils
I was with my baby sister as she was taking her last journey in life.
We made wonderful memories with the time she had left ,I did find myself greaving while I was looking after her and when the day came and she got her wings I did not cry I was so happy that she had a peaceful passing that she wanted her way
🙏🏼 lord please bless this family and give them strength to carry on 🕊️
I work in skilled nursing. It is not easy when you have to handle all of this on your own. Sounds like you have found a wonderful place! Some facilities are not as great! Give yourself some grace! Remember it is quality not quantity! I am glad that your family is there for you! Blessings to you and the entire family!
As the mother with a daughter with a C5 spinal cord injury I can agree with you that Jesus will give you peace and joy and walk with you every day, life doesn't have to be perfect to be good.
'Life doesnt have to be perfect to be good'
I love that! ❤️
@elizabethtallman3280 Very well said.
My brother-law has muscular dystrophy with ongoing problems. My sister works FT.
They are in their 70’s now w/ grown kids. What you are doing for your husband and family is so, I do t know what
the right words is, but it’s wonderful! Praying for Tony and you now and your young son now.
Mercy is a gift from god. Bedsores, struggling to breath, etc etc is hard.suffering is not fair. Pray for mercy...the lord gives, and the lord takes away.we never die, only the body does. Prayers for you and your family on this journey, love will carry us all through.
As a homecare nurse. I like to express what amazing women your are. I see you as advocate for your husband, a wonderful mother. One of the most important things is to take care of yourself. Gets as much support as you can, from daycare for your children, your church. One of the things l see is how burnout caregivers get. Wishing you and your family all the best in this difficult time. ❤
In my family we have 2 people in Nursing Homes. One for Parkinsons. The other for bone cancer. I was a caregiver for my mom after multiple strokes. You are not alone. My heart aches for you. Sending all love and prayers your way.
I work in palliative care and hospice. It does seem like they were kind in talking to you. It’s often much more difficult with younger patients for not only you as the family but us as well. It’s not about us, but I just want you to know that if you’ve got a good team they do care ❤. They do want Tony to live and do well. We can always have hope. Some people do improve too with hospice because of the extra care. But if you had not prepared for the worst, and the worst happened, it’s much harder.
I am so sorry. When we had to put a family member into a nursing home it gave me great guilt and sadness. Do not feel guilty a nursing home provides safety for you and him and will improve his and your quality of time together and is a good thing. So sorry hugs.
I completely understand the decision for nursing home and hospice. My husband of 25 years was in the nursing home for 10 years with Huntington’s Chorea and passed from an infection. I married again and we were together for 8 years he passed during COVID on hospice after being there for a month due to liver failure and complications of congestive heart failure. I couldn’t be with him when he took his last breath due to the lockdown. I promised he wouldn’t be alone and I was unable to be there due to the lockdown. I begged to see him the day before but was denied. The next day he passed they allowed me to be with him for a couple of hours after he passed. It is heartbreaking to see them like this. I just hold on to they are in no pain and happy again. I know this is long but wanted to share this. I pray for your family. Make as many memories as you can that’s the best comfort you can have. Stay strong
That had to be the saddest part of that whole Covid mess. Our loved ones had to die alone!? 😢
I am sorry they were that cruel and heartless! I pray that he and you both will see each other again in Heaven with Jesus, as that is the only thing we can hang on to!
Monsters.
It’s so wrong that they kept you apart
My mom had MS. Luckily she was never sick. I was her full-time caregiver and was able to work from her house since covid. She survived lung and breast cancer. She lived until 82. I'm still struggling with her loss 2 yrs ago. Sending prayers. Mom took care of my dad, then years later, me and my brother took care of my mom. I never had to deal with facilities. I was very fortunate to be able to work from home. Mom died from her MS affecting her lungs muscles in the end. She just couldn't get rid of co2. But she never suffered, just went to sleep in her bed. I totally understand. Moms dr put her on hospice but that was only 3 days. So sorry for you. Been through it twice with both parents.
So sorry for your loss
Praying for you all!
As a former kinder teacher, thank you for sharing with your son's teacher. It is so important for you and the teacher to communicate for your son's well being and positive school experience. She will be a constant person in your son's life this school year, and that is great for him!! They will have a bond and he will know he can talk with her too should he feel he needs to!
My DIL had ALS and I know exactly what you are saying. The day she was diagnosed she was given 1 year. She had 6 children. She lived 4.5 years and they were hard years. Hugs to you. You are doing such a great job. Keeping the new normal for the kids is so important.
Jenny, this is my first time to yours and Tony's channel and I just want to tell you that your message of hope and hanging on through turmoil is so needed right now in our world. You have a lot on your plate, but you understand that Tony does too. He is so blessed to have such a sweet wife who is there for him and to fight for him just to make everything comfortable for him and the rest of your family as well. Tony is so blessed also for such a great care team! May God bless you all and give you strength🙏 ❤Claire (Bobby's wife)
I understand it is sad to talk about the end of life, but as a caregiver it is what is needed in the event that they pass they would know what to do. Living wills are the best thing to have. I advocate for everyone to have one. This way your loved ones do not have to make the hard decisions.
Listen you speak, I feel ❤ God is walking with you in this journey. He will not leave nor forsake you for his mercies are new every morning. God bless you and your family.
God decides and as long as Tony keeps fighting I say do not give up!It is not over till it is over.Stay strong and positive,whatever happens give it your all.God Bless your family 🎉
As a nurse you need to realize that with chronic debilitating illness sometimes you need to plan for the worst and hope for the best. His doctors were very compassionate and caring. Your husband deserves to live and he deserves to die with dignity. At some point if medical interventions do more harm it’s time for the conversation. It’s hard but glad you had such compassionate doctors and your parents to help you through this. Take care of yourself and your family.
This is the first time I watch you. .What a brave woman you are your husband is lucky to have you. I am so grateful full here in England we have free medical help..called the national health.service. Love from England ❤️
The care system in England is so progressive . My cousin was in hospice care, in a wonderful facility. My Mom was on hospice in 1990 at home. It was a terrible experience as they did not keep my mother comfortable. The nurses were very mean, and I felt I would never deal with them again. Life has its twists and my spouse had the navigator(early care) for dementia. Not 100% perfect experience, but parts of it were wonderful. It was difficult to navigate medicaid, Medicare, Passport help, hospice and family issues! I always say the only thing I would change is I would have left my job earlier!!! It was wonderful having him end his journey at home 🏡
You're the super hero!! What a wonderful wife and mother you are! Your husband is so fortunate to have you in his corner! May God Bless your kind heart!
You're a heroic woman. Seriously. This is the first time I've ever seen one of your videos, and I can see this to be truth. Women in this day and age are so self-indulgent, & wrapped up in what they believe they, "deserve", it's almost impossible to remember about all the incredibly good women out there, who understand what wedding vows still mean.
No man in this world, could ask for a better wife, if God told them they could "special order" one, just this once. This, I believe, is why you are finding avenues opening up for you, to help ease your burden, even if just a little. Because people like yourself? Are the reason the word, "DESERVE", exists.
God has his thought upon your family, even if only for brief moments, and I hope it allows you to continue working through this path your life has taken, to whatever ending God has in-store.
Your heart is true, and whether you know it or not, you're providing strength to others, even when you feel at your weakest.
God Speed to you and your family.
Your video just popped up on my TH-cam. Jenny, you are such a strong person. It's clear to me that God's plan for you was to be Tony's wife and advocate and a great mom to Alex. You and your family will be in my prayers. So happy to know you are a believer🙏😊👍💐🙏
Praying for your family. Lost a child to MD at 14 years old. The Lord is the best thing and only thing that gets you through.
Losing a child is just 'wrong'. My niece was at a school for those with physical challenges, a significant number with Duchenne's and I was so sad for the pupils as they had at least 1 to 3 memorials for classmates who had been fetched by God.
Having gone through three years of my husband ‘s Illness and being his sole caretaker until his passing my heart goes out to you. It is so difficult to watch someone you love suffer and struggle.You are doing such an amazing job getting the best care possible and keeping his mental health intact by bringing some normalcy in his difficult journey.Tony is very Blessed that he has you by his side..Happy to know you got your parents nearby for support.🙏🏻 That Tony continues to improve 💞
my late wife had muscular dystrophy on 1-13-19 she didnt wake up. she had steel rods. she was always in and out of hospitals. i miss her everyday.
You just appeared i my feed and hour story brought me ack memories of what my husband and i went through. He had Parkinsons disease. He spent the last 2 years of his life in a nursing home, hospital forced. Since he passed i got sick and again, hospital forced am now in a nursing home. My prayers will be with you.
As a retired Kindergarten teacher you did the right thing in communicating. I always appreciated when parents let me know any life events or concerns so we could together support the child.
I am so sorry about your husband .. However I am glad he is receiving 100 days of skilled care... sounds like he is in a good hospice facility
I work in a long-term skilled facility and have been a CNA for over 20 yrs in different facilities.. I have seen so much that I truly despise health insurance companies.. No human should be treated the way these health insurance companies treat people.. It angers me more than words can say.
They do NOT care about the person or the situation they only care how much money is being spent ....Period!!
You go, girl!
I can tell that you have both mad skills and a lot of guts. I am VERY impressed!
I had two sons with muscular dystrophy. Tony is at the end of his journey. The only thing the doctors can do is keep him comfortable. The procedures will not help or prolong his life. Be there with him until his last breath. Let him know that it's all right for him to let go when he's tired. You will keep his memory alive for your son. It will be the hardest thing you ever do but you will get through it.
how is this helpful or appropriate as a public post? Even as a DM, way too personal unless you're close to her. Points for her to make, not an internet stranger. ouf.
@@kimmancha4314 If you have lost a spouse to disease that is terminal, this is the best advice.
wtf is wrong with you ?!!?! Seek help
You've been there, you are the best one to speak to this from first hand personal experience.
If a person puts their personal life out here, they have to expect personal experiences to speak up.
Blessing for how much you care, so much to take the time to come on here and speak and try to help!
May God bless and comfort him and you.
How wonderful!!! You've done such an awesome job of making his "room" a "home"! What a blessing that a lot of the weight has been lifted off your shoulders. I am a retired hospice care provider. I learned so much from these angels. I took care of a woman for almost 2 years on hospice. Her R.N. said she would never take her off of hospice, because she would never improve. She was in her 80's, but, still it was a blessing. We had musicians come in from time to time to perform. Guitarist, harpist. It was amazing!!! God bless you and your family!!! Love all around. It's something we all can give/share!!!
You are a very loving and thoughtful wife and mother. May God bless you with much fortitude and strength and bless your husband with improved health as deems best. Best wishes to the entire family. You and your family will continue to be in my prayers. Your words to your husband are very uplifting and encouraging. Blessings!
My heart goes out to your family. The constant stress takes a toll on all of you. It is not only your husband who needs care and love. One day at a time and realize your limits. Find a small beauty each day. A smile. A cloud. Favorite food. A blade of grass. A tree. Amid constant stress and worry, these small moments make a difference. Give thanks for one another. You are never alone and be blessed by even strangers who care.
The sickness sucks and I can relate, I lost my daughter four years ago due to MS. She had it for 29 years and I also had to put her in care. Take it day by day you will get strenght trhough God
MS is a terribly progressive disease. I was 69 when my husband was diagnosed with Stage IV lung cancer. I advocated as much as I could for everything but knew there was no recovering from it. I cared for him at home for 6 months until he passed. Although I knew it was hopeless, I had to keep it all inside. The last month or so, he just kept saying he wanted it to be over. He knew. I knew. But he was tired of the treatments, the doctors and the pain. I fully understood. I never tried to delude myself but I wanted to keep him at home so he could feel normalcy. Watching the person you love most in the world slowly leave you is the worst thing I have ever been through. You have your children and your faith and your family to get you through. Just enjoy every day you have with Tony. Having doctors and staff to come to him so he doesn't have to keep going out or being transported is probably a big relief for him which is why he may feel better. People who are ill get tired of being moved, poked and prodded. Glad he has staff around him whom he likes and people are not constantly changing. All of these things give him a lift. You are doing all you can and I am sure he appreciates and loves you with all his heart. Blessings to you, Tony, and your family. 💖
It's Muscular Distrophy not MS.
Wow, I appreciated all that you shared. I'm new to your channel. I have a rare form of muscular dystrophy that mostly affects my ability to swallow, tongue weakness and dropping eyelids, but lately it's causing a lot of leg weakness and hip pain. I'll be praying for you Tony!!
I'm so sorry 😢
my son has Duchenne muscular dystrophy, it's a horrid disease, my son gets sick a lot too. Doctors tried pull same thing about my son, I let them once and he got better for 16months, then they tried again, I told them no as long he gets better I am going fight for my son. Some doctors dont understand we know all this. If need someone to talk to message me :) I been fighting for my son years.
Your video also just popped up in my feed. I’ve literally watched your channel grow in the last hour. It was in the 6,000 range and now it’s over 7,000. Everyone please subscribe and let’s help this precious family. ❤
We went thru a condensed version of dealing with insurance companies and assisted living and rehab centers over a four month period with my MIL. It was terrible due to my emotional problems, difficulty communicating with her, constantly having to jump thru hoops, living with her for a couple months where we had no decent sleeping conditions, etc. Praise God she did pass away and no longer had to suffer agonizing pain. I have a hard time since then handling my and my husband's medical needs. Between our experience and covid, I would just as well never see another medical facility.
I'd save those daily blogs/videos for your future and that of your son. Sending support and prayers 🕯🕯🕯🙏🙏🙏
Hi Jenny, I just want to say this was heartbreaking for me to watch this video as I have been where you are before.My husband of 40 years had multiple sclerosis and I ended up taking care of him for the last three years of his life watching him decline. Being a caretaker is the hardest job there ever is. My heart goes out to you sending healing thoughts your way.
Hi Jenny, I hope you guys are doing well as far as possible...
Hospice is not giving up. Hospice is fighting for a good life while it lasts.
Of course is hard to face the hardship of a serious illness, but in hospice you will have a chance to be happy and get support. It can last years and you can reach a point where you are discharged, don't worry. It's not giving up. His life will be better with palliative care (yours and your family's too). Use all the resources and help they offer you, you deserve it.
We will keep praying for you! Please let us know of we can help you with anything, we are your village, we are here for you guys ❤
Just seeing your videos.
Nurse here… I’m starting right now to pray for you all on this difficult medical journey.
May You feel the healing power of Jesus.
Hugs from Arkansas.
You make a plan so you can enjoy the time you have left. If they left you unaware his end of life could be much more painful. I did hospice for a long time and the worst cases I saw wee when the patients family couldn’t accept the diagnosis. They would refuse comfort meds and they’d want the patient doing uncomfortable things. And the patient would often not be peaceful because they were so worried about the family they are leaving. I think the worst part was the pain though. I really struggle to understand families who refuse pain and anxiety meds for their dying family. I’m glad you have a plan and are such a strong advocate for him. Love him and spend as much time with him as possible. God bless you
So well said. ❤ Thank you for sharing your knowledge.
Thank you for sharing x my husband has terminal cancer,is at home at the moment x
@@Julie-si3hi🙏✝️
Hi Jenny, I just came across your channel this evening. I am so sorry for all you and Tony are going through. My husband was born with the Huntington’s Disease gene, and began with symptoms 20 years ago. I am a Registered Nurse, so as he needed more care, I retired early to take care of him. My husband is a veteran, with this disease, there is a lot of paranoia along with the disability, so the VA hospital was all he would trust. I tried everything, I read everything, I was ready to try a swallowing study, but when they spoke those shocking words, “it’s time you look into hospice”, I felt like I was hit by a ton of bricks. I am sorry you and your family are so young to deal with all of this, I just wanted to let you know that hospice has been amazing. I will pray for you and your family, you have a lot on your plate! Make sure you get rest as well! I pray my husband can find peace, he is so restless, but I know he is a believer🙏✝️❤️
The John Grisham book The Client reflects these insurance nightmares. In the trial it is discovered that the company’s beginning policy is “deny all claims”. They want to hold out until the family gives up. So sad. So happy you have had the strength to fight. God bless you all.
Just found your video. My thoughts, prayers and strength are with you. My husband passed 3 years ago after me being being his care taker for 10 years. You are an “ Angel” getting him through this journey. Remember to take it a day at a time and “ breath”. 💕
I'm thankful he's in a facility that cares about him. That's a blessing!
I admire you for not giving up on being your husbands advocate. I have been on the end of being an advocate for a family member during a long stay in a hospital setting for 7 months and at the same time being an employee of a skilled nursing home and long term care facility. At the hospital being the advocate every few days fighting for continued care and then getting care at a specialty hospital for the last 4 months of the 7 months, then getting the right care at the nursing facility. So many emotions and so much work to be done when something like this happens, having that great support team makes a difference. I wish you and your family all of the best, praying that your needs are met and that you get to spend quality time with your husband and your children.
Last year I had to rush my husband to emergency hospital because he had been diagnosed with heart failure four years prior and was on medication and he needed heart surgery but with COVID and unable access to doctors appointments he had started to have one symptoms that resulted in him having a fast heartbeat which he had to have his heart stopped and shocked back to normal rhythm and he never recovered from it and gradually was given more medication and blood tests regularly but because was 68 years old at the time of diagnosis they assumed he had retired from work he never mentioned he was still working full time and a precision engineer of 52, service and he was dedicated to his work place but he was struggling with heart failure that eventually he was made redundant at the age of 69 years and he was 71 years old when he died last year but he was rushed to hospital with symptoms unrelated to his heart failure and within forty eight hours he was dead and he died from acute pancreatitis and liver and Gaul Bladder inflammation and kidney failure and he was put on dialysis a couple hours before he died and the doctors wanted to put him in a induced coma and on a ventilator because they said he was going to crash from heart failure and they wanted to shock his heart back and place him on a ventilator but he didn’t want it but they said they couldn’t understand him and they couldn’t take my decision and said it wasn’t my call to make. So they allowed me in the room while the crash team were standing by me and he asked where I had been and I replied discussing your treatment with that he said what treatment I said you’re dying and ready to crash your heart is failing so they here to shock you back to place you in a induced coma and ventilator and you will be on dialysis for life support and he said No No No and the other doctors in the room said he made it clear and they understood his wishes. He died 7 minutes later. Some times I believe doctors prolonging the pain and suffering of people who have no hope of survival and prolonging their life is not good for them and their family members life is not the length of days but rather the quality of life is the most importance to the world is making more money keeping people alive and then people are fearful of death and some people are desperate to cling on to life to live and to understand the spirit within their bodies and their eternal existence is not just this three dimensional reality of this world and the thread of fear of death enslave us all.
God blessed Tony with a suitable partner. May you be given strength for every day. 🤗
Keeping Tony, you, and your family in my prayers. ❤️🤗🙏
You are such a precious soul. I cried hearing you give encouraging words. I struggle with my mental health and your words helped me. Even with all you are going through, you are passing along comfort to others. I am in awe of you, sister in Christ! Thank you for sharing and being you. I hope to meet you in and Tony one day in Heaven
Glad the ladies could help you get the right insurance and put Tony in a good care facility.
Praying for you and your family!
I was a hospice nurse for Marie Curie in the uk, I worked in the hospice & in peoples own homes. The hospice teams are brilliant and if they can get patients to a place where they can go home even just for a few weeks it will make a world of difference.with the hospice staff it’s not just the patient who is cared for but the whole family.God bless you all
Thank god the uk has the NHS, I’ve recently helped a friend who’s brother past away in America a million dollar insurance policy may not be enough ,they have taken his pension House & she has been told if that doesn’t cover it they may come to my friend for the rest. Very upsetting for everyone.
wow
I am going through a similar journey as Tony in trying to get care for my multiple chronic illnesses. ❤ Thanks for sharing your journey 🙏🏼 and continued prayers.
Jenny and Tony, I am new to your channel. Thankful for your trust in Jesus. Thankful for the doors God has opened, like a facility to be in, a new mattress, Arbies sandwiches, milkshakes, a caring staff, and being able to set up and decorate Tony's room to feel more comfortable for Tony and your son. I will be listening for the next one.
Jenny your a wonderful wife and advocate. I just saw your channel. My heart goes out to you and Tony and the family. Im going through alot of health challenges with myself and family.Its very sad.Prayers to Tony . I pray he is not in pain.The insurance challenges are terrible.Dont be afraid of crying . Its your right!!!!!
I wish you and your family all the blessings possible!
“Every day of my life was written in Your Book before one of them came to be.”
First time listener. Thank you so much for explaining this life story so well. You seem like an amazing person that is doing very well at keeping it 'all together' despite everything that is going on. May God bless you, encourage you and give you strength (to your whole family)!
Prayers for your family
Prayers for you,Tony, Alex, Noelle and your extended family! GOD will give you what you need
I’m sending you a big hug. For those of you who have never gone through this you are very blessed. It is so extremely exhausting and stressful. ❤
You are amazing, and I just wanted to tell you that. There are angels on earth, and you are one of those. ❤❤❤❤.
I know you mean this in a kind and positive way but I also lived this journey a few years ago and people told me the same thing. I never let on but I actually didn't like hearing that because I felt like we were just living life and doing what ever had to be done. And I think most people in that situation would do the same. Didn't mean to bring you down but just wanted to put that out there in case there are others who feel that way too.
Coming from a mom and caregiver whose daughter, age 31 was lost to ALS after 5 yrs; palliative care is helpful, and hospice care is a great help (she was on this for three years). Be advised the hospice process tends to liberally increase pain meds and these with “comfort” meds can contribute to diaphragm weakness/ dependency. (ALS patients often deal with these same conditions but w/o hope.)
What does Tony want to do? Where there is hope of life there is the possibility for more time. Hallelujah for the grace of God on your lives. Praying for you for wisdom healing, and peace. 🙏🏻
Please know and feel all the sincere heart hugs coming to you and your family. And sincere prayers.
My fist time onto your channel. May your family be blessed through this difficult time. God is good and shows up in unexpected ways.
As I listen to you, Tony is trying to fight. Let’s all pray for a miracle, even a small one. Have a good night ❤.
@@pearljames5838 thank you so much! ❤️🙏🏻
You look about the same age as me and I'm going through a lesser ailment with my husband. I'm about at my wits end so I admire your strength. Just know you are doing the best you can with the information you have. It's a lonely road but you are a beautiful person.
May the Lord give you strength and courage to love and help your husband through your journey together.
I understand what you're going through I'm a caregiver for for my husband❤ he's doing lot better he's able to set up move around in his riding wheelchair❤ he had a total of five Strokes from 2017 to 2019 I myself I pray a lot and God Is A Healer❤❤❤
Insurance companies........i have been there. So grateful your doctors were aware enough to advocate for you !
I'm so sorry to learn you tow are going through all this that resonates all to well with my family. Thank you for sharing.
My 51-year-old-son has Advanced Late Stage MS and my brain at 74 is so tired.
I DONT KNOW WHAT YOUR SUPPORT SYSTEM IS LIKE MINE WAS REALLY GOOD! I was given the same options for my husband they wanted to put him in a SNF he was very ill and we knew it. .....I am in healthcare and I am a Healthcare Analyst, recovery is more than meds it is mental well being, your mind is powerful when it comes to recovery or a quality of remaining life, that is why I was stern and said we are taking my husband home and it made an amazing difference in my husbands outlook, he did fully recover and I am not sure he would have in the SNF. My husband passed away about 4 years later due to his chronic illness and Covid, but we had 4 good years with him, I would not have traded those last years living with him for the world.
God Bless You and your family. This is the first time I have watched your stream. I lost my husband in 2013. He had abnormal Dementia from a fall from a ladder and fluid on the brain after 3 brain surgeries. Over a 5 or 6 year period the dementia increased and no diagnosis of Hydrocephalus was until about 6 months before we lost him. It was a very difficult period for all of us, but in the end we had to give him grace and understand that he would be at peace without pain. I am thankful that I had 31 years with him and we had such a really great life.