If she could keep one, Heather’s diary would read, “Another great day with my guy, where I am clean, safe, and happy. He is the best.” We’re at the point where we have to let all of the unspoken words matter - feel them on the inside and know that we are still loved. ❤
My mom came home from the mall with a stranger and said her car was stolen. Two weeks later, the police finally contacted my dad about his car being in the lot for some time. That was the end of her driving. My dad did an excellent job taking care of her.
My dad is now 85 and I started noticing something was “off” around the time of the big 80th birthday my mom was throwing for him. His eyes looked …. A little “spaced out.” Then, i remembered how he had paid every bill and done the annual taxes my parents entire marriage. 60 years. But, one year, he just didn’t do the taxes. No explanation. So, my mom rushed to figure it all out and was dumbfounded as to what was going on. This man had run a company for 60 years. Then, he started asking who the next door neighbor was; how to operate his ‘cell phone’ (it was a cordless house phone 🥺), etc. Now, he pretty much is just ‘there’ but he’s still my dad ❤. I did have a big cry last night when no one was around. I deeply miss his personality, sense of humor, his insight, his advice. It’s devastating. And, I know my mom deeply hurts & misses her best friend. 🥺🙏🏻 prayers to you and everyone suffering from dementia.
I am sure that you have far more great memories of your father and I hope you can dwell on those good memories other than how he is spending his last year's. This is probably easier to do once he is finally at peace. My FIL had alzheimer's but he was lucky, his hand was taken from a heart attack, yes we consider him lucky. His family members lived for years with this disease but Art lived with it for 5 years after diagnosis. Absolutely devastating worthless disease along with many other diseases. I wish you well on your journey and your father's.
I am in Denmark, and we refer to dementia as an illness that mostly hurts the loved ones of the patient. Your story seems to be an example of that. By the you realized that something was wrong her brain was already so impacted by the illness that her emotional reactions were flattening. Thank you for sharing. We all need to be more aware of dementia in aging population. Best thoughts from Odense, Denmark.
@@Junichild They say if you have dementia in your family you have 50 % chance of getting it as well. You can get a test to see if you carry the gene and then take necessary precautions accordingly.
Even though Heather can't reciprocate your affection, if you need to hold her hand or feel her hug, do that. It's important for your well being to still feel connected to your spouse. You are doing such a great job of staying upbeat and keeping her safe and happy. ❤
We should all be so lucky to have someone like John taking care of us. You're a remarkable person who has been given a big caregiving task. Sending supportive and peaceful thoughts your way!
Hi John , I am in England , and have worked with people who had dementia . You are doing a wonderful job , not only with Heather but sharing such valuable information to help many people on a similar journey... much love and respect x
This is such an important video to make. My oldest Aunt was diagnosed last year and my heart just broke for my cousins. I’m a nurse and know all too well from a health care professional perspective. My Mom passed a few months ago due to cancer and I realized right away that my Mom’s other sister was acting strange. She is still going through an assessment. However I suspect Lewy Body dementia in her case. My cousins were very concerned about her behaviour, even blurting out during the eulogy and I kindly addressed her after she repeated what I said about her and my Mom being so close and agreed with her. My Mom was the youngest in her family and was so worried about her sisters. ❤ It’s such a cruel disease. There is some medical research ongoing that looks promising. Keeping Heather active and engaged , even literally taking her hands in yours to assist her in brushing her teeth as long as you can. John, your videos should be shown to student doctors, nurses, LPNs and CCA’s programs as a teaching tool. As health care professionals, I always tell students and new graduates that we don’t just take care of a patient, but their loved ones as well. Medical treatment is only a part of care. Compassion, understanding and empathy is essential. ❤
Thank you so much for your heartfelt comments, and especially complementing me on these videos. I sure didn’t expect any of this reaction and I appreciate every single reply.
I love what you said about taking care of the loved ones, as well. It is very true, and I don't know how much of this is covered during medical training, but it really is an important part of it.
Clean, safe, comfortable and HAPPY! Great addition (John) and a good goal because so much of this caregiving is stressful even when we stay as calm as possible. I still think that in addition to the EXCELLENT comments from you, a health care professional, the loved one / caregiver often knows their person the best. When we are silent, calm, and at peace then we can pick up on the fears or concerns that our loved one may have trouble communicating. We can also get tips from them about what makes them happy and we can then be happy, too! And, for our family, it seems to be a constantly changing and evolving situation so that keeps me on my toes. In addition, today, I learned about a resource in the U.S. (from admin at the neuro's office) called Aging and Disability Resource. There is so much information that the pros know but some of us family members have very little knowledge. So, this resource may be helpful in educating me about the specific diagnoses (we have several things going on) even though there are certainly unique and varying speeds of progression / decline. Today, I learned that a lot of my extreme concerns about seemingly super fast decline is ... really just a part of the expected path. Things are advancing and my loved one is right, 'it could always be worse'. Thanks to the entire TH-cam community for sharing inspiration, knowledge, calm peaceful strength and reminding each other that you are not alone.
I believe my husband has dementia. However, I can not get him to go to the doctor. He knows something is wrong but is scared to find out. I just keep researching and do my best not to get frustrated as he is not always kind with his words but doesn't appear to know he's saying them. Keep up your strength and shower her with love when she allows it. Thank you for sharing. It makes me feel a little less alone.
John that was very emotional and a trip down memory lane for some of us. Clean, safe and happy is the essence of great care. You sir are doing an outstanding job and clearly Heather is your world. Take care and we your subscribers are right here. God bless from Lincolnshire England.
As you were speaking, I felt like you were telling mine and my husband's story. He received a diagnosis of early onset dementia, leading to Alzheimer's Disease; he was 60. I remember him saying that he had brain fog. About four years after his diagnosis, he had a fall down our basement stairs, which resulted in being brought to the hospital and eventually to long term care. He used to be a music teacher, and he was a fabulous piano player. Now he doesn't play. I hope to keep listening to your vlogs. I found this very helpful in my situation. Thank you for sharing.
I walked this journey with my parents starting in 2014/15 when my mom was diagnosed with dementia. It was awful. It was made worse when my dad was killed by a drunk driver near the end of 2016 and I was left largely alone dealing with my mom’s care. She passed in December 2021 after a long battle. I feel for you and all you’re going through and pray that you have the strength, comfort, and support you’re going to need. ❤
I thought the part where you said it isn't about improving life, but about making things comfortable was touching. I am still young and can be impatient, especially with my parents and older relatives. I can see myself getting frustrated with things not improving if I were a caregiver for someone. I will try to remember your kindness and wisdom when I am in the position of having to care for a loved one.
My husband is in stage 6 now. I am now actually thinking of making burial arrangements. He has begun to sleep a lot during the day now and wakes up confused.Still says he’s getting better. Just started year 15. This disease changes both the patient and the caregiver. Acceptance is hard but more than necessary. It will save your life. Carry on❤
@@suzannereeves7768 there are seven stages with subgroups. If you search dementia stages you can get a lot of information,but it was his palliative care doctor who deemed he is now in stage 6e now which is moderately severe dementia.
Thank you so much for sharing your journal John. Your level of acceptance and engagement is reflected in Heather’s level of contentment. Your videos are a gift to the community.
My dear friend. Thank you for your video. As I said before, I take care of my dad who has dementia and is bed ridden. I get him up with a supplied lift every morning for breakfast. He stays in bed for supper which is my time to really enjoy my dad. We talk about some beautiful pictures my sister posted on his wall to enjoy. He talks to them in such an affectionate way. It’s our time to really enjoy the moment. Mom has severe short term memory loss, but we still enjoy watching murder she wrote and other old series. You are a good man. Keep sharing these special moments. They help the rest of us clearly understand that we are not alone. With love from Pincher Creek, Alberta. ❤
As a family we went through this with my father in law. It started sometime many years ago but his decline worsened rapidly after he suffered a TIA or possible stroke. My mother in law tried to keep him at home as long as possible but at some point he became angry/argumentative/and they began to physically fight. Shortly after we found out about this we investigated senior care homes which in our area of the US are not exactly advanced facilities. He lost his battle with dementia after contracting Covid and pneumonia in February 2024. My prayers to you and Heather. It’s a devastating disease which has such stigma attached to it. I have so much more I’d say but you already understand everything as it is your daily life. I think of you two often. Prayers and light go out to you from South Georgia in the US.
This is the real meaning of the phrase "in the good and the bad" I suppose... Only a few people can handle the consequences of the second part of the phrase, you are one of them. You are good man, stay strong!! A big hug from Italy to your family.
One of the good? things about dementia…not that there’s anything good about it…is that the person suffering it doesn’t always feel distraught about what’s happening. In my mom’s case, I remember her telling me about her hallucinations. At first she saw shadows, then eventually “realized” it was us, her children, and our childhood dog, Patches, coming to visit. She just accepted this matter-of-factly. All you can do is try to keep things light and cheerful, as you’ve been doing. Thanks for the videos.
I am a retired nurse. I specifically went to Boston for Alzheimer’s/Dementia specific training It’s as horrible disease. I worked with dementia patients until I retired. As partners husbands/wives that’s our responsibility to take care of our other half. Ty for taking care of her. U wouldn’t believe things I’ve seen with family members.
Thank you for making this video. It struck many chords for me. My husband was diagnosed at 57 with YOD, 18 months ago, and a very similar progression as that of your wife, with the aphasia early. He was a teacher until 2021. The emotional flatness, the vacancy.. it is a lonely experience for the partner left behind. My husband was aware in early 2022 that there was something wrong, that he could not think. Now, I really don't know what he thinks or understands. I like your term "cognitive horsepower". Like you, my goal is to keep things calm peaceful, positive and reduce my expectations. Thank you again I hope you will keep sharing as you are a little ahead of us on this path and very relatable. ❤
Sounds like exactly what we are going through right down to the timeline. It’s so difficult. I’m glad you could relate to my videos. If for nothing else then to know that you’re not alone in this. Take gentle care of yourself and I wish you well going forward.
Very interesting. I’m so glad you covered this. As older couples we question each other when we forget something or make an odd statement. We just never know but hearing you say that she was making mishaps every few days was a clear sign. Thank you for sharing.
I wish I had seen a video like this in 2019. My husband was acting erratically and was ultimately diagnosed with vascular dementia. He wouldn’t give up his driving and he became combative and delusional at the end. He passed away in 2020, so a relatively short duration for the disease, although in retrospect I think I missed some of the clues earlier on. We were married 40 years. You are doing a wonderful job and Heather seems like such a sweetheart!
Thank you for your loving honesty. My sister has had ms for @ 25 years- it’s progressive and such a cruel disease, like many. I love the way you treat your “ wife” , sadly she’s no longer that- I really like to see her doing the Heather chuckle when she is happy. Good luck and stay strong and positive. ❤️🇦🇺
Having gone through this with my husband it was frightening to watch the transition of this disease.My saving grace as a caretaker was to meet him at where he was and to let go of any expectations of him being who he once was.I cherished the little moments of memory and recognition and was very grateful for the moments of connection.
Agree. My mum’s first symptoms were so slight. She was retired RN, raised six children, it was hard to see anything wrong with those beginning changes. We attributed to pure memory aging. She was frustrated, and it came out in anger. I was living with her for several yrs prior, we traveled together etc, I’d starting doing majority of driving. She always asked me why I drove different routes than she did. She finally confessed to me after one bitter altercation, that she was afraid she would not remember how to get to my brother’s house. That was a true eye opening moment for me. I realized that most of her frustration was due to her “knowing” something was wrong. I started living in her world, being present in the moments of her life, and the last few yrs were most memorable. Not easy years, and we lost her in 2022, but it was the greatest privilege of my life to care for her. I learned so much, and miss her every day. She was in assisted living for last couple yrs, and I now volunteer at the same facility. Always living in “their” world.❤😢
I am so sorry for your heartfelt loss.of your mother.Thank you for your loyalty and love you blessed your mom with in her difficult and isolating journey in dementia. I too took away from the caretaker experience feeling so privileged that I could be that loving support and anchor for him.I suppose to them we were that bright light of a lighthouse in a raging storm that brought them back to safety and security..Tale Care💞
My heart just breaks from you, I am also so impressed on how well you handle all of this as it’s the hardest job you’ll ever have , it takes a very special person to do it as well as you do. 🤗🤗👍👍🙏🙏
after taking the covid vaccine I had a severe reaction and it was all cognitive. I couldn't retrieve missing words. In our normal processing we stop and pause if we forget a word and then it comes to us, but I couldn't find out where to even search for a forgotten word. it took many tries to put things away and I would have to try again until I got something put away in the right place, it was exhausting. I would find eggs in my kitchen cabinet instead of the fridge. it was the most horrible thing I ever experienced. I worked as a family liaison for a woman with dementia years earlier and I would watch her struggle to tell a story. she would look off and then return with a new conversation. I understood what she was feeling after this experience. it was horrible. I am thankful you have a great understanding of this disease. I witnessed a child of the woman with dementia argue with her about her memory issues instead of allowing her to remember something the way she remembered. your videos will help others interact with their loved ones.
I was wondering how it started with Heather but I didn't want to ask .Thank you for sharing with us.Its all so sad and you are a very good husband and man for taking care of her the way you do .Praying for you and Heather I can see how much you love Heather .
Stay strong brother. Went on the same journey with my Mother in-Law. In the end, death was a release for her and for my wife and myself, 8 years from the initial diagnosis. Truth be told she had been gone many years before she finally left us. If there's any consolation for us she never got know the grief that her husband of 60 years had already left us. Stay strong...
The algorithim brought me here from Trey and Theresa Pippen's channel. For anyone going through caregiving, there is a lot of information in these channels from the comments alone. The things I can tell you from experience is you can't second guess dementia. There are many forms and they don't follow a playbook. The different forms present differently on a person to person basis. Trust your intuition, you know them probably better than anyone. Let them know that you've got their back and love them unconditionally. Keep them at home as long as you can and if you can't go to visit them often. Do simple things with them. Thanks for posting this video and sharing your wife's and your story.
Very good comment! They don’t always follow the playbook… I find so much of the mainstream dementia information is completely unreliable in our journey here. For that reason, I’m just making it up as I go.
@@JohnvanGurp A hospice nurse is the one who told me to trust my instincts when caring for my mother. It's a difficult journey because everything we know as being logical goes out the window. All you can really do is roll with it. Wishing you and your family the very best!
I just found your video. I am currently going through this with my sister. She lost her husband back in 2016 to Alzheimer’s. In 2018 i told her she needed to see a neurologist because something was wrong. It was a real process! She lived alone so it took a lot of work and undercover acts to figure out what was going on. In 2022 I was running to and from her house several times a day to make sure she was eating, giving her medication because she was confused about when to take what. She stopped bathing, started having accidents, apathy set in. I took her keys off of her in early 2022, so I had to drive her everywhere. She couldn’t shop on her own because she couldn’t figure out what to eat. She only wanted junk food, all sweets. Started having more significant speaking issues. In December of 2022 I had to put her in memory care at 63 years old. It killed me. I tear up just typing this. She wasn’t safe at home anymore. We got a suspected diagnosis of FTD (frontotemporal dementia) and aphasia. Fast forward nine months and she couldn’t speak anymore. It’s been about a year now since she could talk. Her new diagnosis is bvFTD (behavior variant) and global aphasia. I still pick her up at least once a week and take her for a ride. I speak to her like normal, but she can’t answer and doesn’t understand what is being said to her. It’s a rough ride every week. Such a cruel disease! I think you are very much like me, just going with the flow. Nothing to stop it, so you just make the best of it. I’ve videoed my sister and think about posting it for awareness. Anyway, you’re not alone.
Heather is so very lucky to have you, my step mother put my dad in an old people's home at the first signs of dementia. He lived there for about 5 years . I live about 10,000. Miles from them, but did fly back often to visit. Many people either can't cope or refuse to cope with a declining loved one. God bless you.
Your Heather is blessed to have you. My husband's temperament was much like yours. He was always the one talking me off the ledge when I got upset or worried. He died from colon cancer 8 & 1/2 years ago. After he was gone, I would channel him whenever I got upset or worried about something - WWMD (What Would Michael Do?) I send you prayers of support for the months and years to come. 💙
In 2020, My husband was diagnosed with early onset Alzheimer’s. Symptoms pretty much started a couple years prior to that starting with not being able to do his job. Jeff was diagnosed and has been on disability since 2020. In the past year he has quit driving and aphasia is rearing its ugly head. Jeff knows he has Alzheimer’s but does not want it mentioned. These dementia disorders are so sad. Thank you for sharing your life.
Your calm demeanor is so impressive. My husband, 60, was just diagnosed with early onset Alzheimer’s. I had alarm bells a couple years ago but he refused to go to the doctor. He had memory and personality changes. Severe depression. I finally got him to go to the doctor. He tells me he feels like he is losing himself and is quite aware and it’s heartbreaking 💔. Maybe a blessing she was more unaware of the severity because listening to the anguish of him talking about how he doesn’t want to forget us is sometimes too much for my heart.
Powerful episode John. The only silver lining I see for someone with full on dementia is that they are usually unaware of it. This may be a sliver of a silver lining for the caregiver as well. You don't condescend to her, patronize or baby her. Total respect! THAT'S LOVE and WISDOM on your part. Stay strong. You are not alone. ❤
John, you are truly a very good man! Your love, patience and devotion to Heather is so lovely to see. We have walked this long , sad road with both parents. Heather is blessed to have you ! I should say you are blessed to have each other❤❤❤ God Bless You Both!!
John I recently came across your blog and am now a subscriber. I think your approach to this difficult situation is absolutely remarkable. I feel for you both as well as your children, family and friends. It's like a slow, insidious loss of your loved one; albeit not so slow. I'm quite sure that you are helping so many people who are in similar situations, which is commendable. I like your statement about this being palliative care. That word is most often associated with cancer but it is completely appropriate for dementia care too. Your intelligence shines through in the way you frame all that is happening. You are a wonderful husband and a remarkable human being. Please know that people's thoughts and support are with you. YANA right back at you❤
It’s so difficult to watch your loved one disappear. I’m sorry, John. But you are so kind to her. It must be terrifying to realize something is happening to you, but it is also terrifying to watch it happen.
Everyday with dementia is a learning experience, not one day with it is exactly the same. My aunt went through it and I've experienced it all unfortunately.
John you are an excellent husband and caregiver. Keeping it simple is wonderful. I once was a caregiver for a lady with dementia. She forgot that her husband had died. Her children were adament that we keep telling her that her husband had passed. The look on her face was unbelievable. I never would tell her. Enjoy your time with Heather everyday. You both are beautiful.
Im 49. My mom is 73. Shes kinda having some issues. I dont even like saying it. Afraid by saying it, it will make it get worse sooner. She had some spell few yrs ago. Ever since she's had flat affect. Its been hard for me cause it feels like I'm only one that cares. I know its not her fault. I just need my mom to be my mom. I've had her every single day of my life and I dont want that to ever change. I get scared of the future but God's grace is sufficient. Im glad I found your chan. Its helping me try to accept what I've got going on.
Palliative care. Wow, that hit home for me. Keeping my Dad, clean, safe and trying my best to calm him down. He is in a nursing facility now. I can tell when he is sundowning right away. He works himself up into a lather about things. He still can communicate pretty well, but is delusional about a lot of things. The other day, he was totally convinced that he had not eaten all day and that they are deliberately starving him. I got on the phone with the nurse and she assured me that she witnessed him eating all his meals very well. He did pick a fight with another man at the dining room table but they separated him and his food was never touched by anyone (he claims, they steal his food from him all the time) and that afterwards he finished all his food. I am getting to the point of not looking forward to picking up the phone to talk with him, cause it will be one crazy story or another that he will come up with.
Been there and done that. I started off with my Grandmother and senile dementia taking care of her. Next my father-in-law had Alzheimer's and at the same time his wife came down with Vascular Dementia. After their deaths I was care giver for my Aunt who had lung cancer. This included running her business. Then both of my parents got to the age where they could not longer drive.... They both had some dementia. After my father's death I had to care for my mother for the last 12 years. Today my mother is 98 years old, has serious dementia, bedridden and requires care givers 24-7. By the way I am 71 years old myself and have to run the family business. I have myself experienced everything you are going through...... I have spent many nights in the ER room..... I have been lucky enough in my life to have the time to take care of my family.... Good Luck
Bless you! That is a lot of caregiving. You have been a wonderful blessing in their lives. Caregiving AND running a business is an enormous amount of effort. You are an amazing person. ❤
I, too, have been fortunate to care for many family members as well for varying lengths of time. Although stressful and consuming, it truly is a gift to be able to care for family in-need. Many loving, caring, and touching moments take place. It helped me to feel good by fulfilling those purposeful tasks given to me. GOD bless you for your kindness and sharing your skills and talents.
Thank you for sharing 💞 Its interesting that Heather mentioned feeling like she had brain fog. It must have been extremely scary for her in those early days. She's very lucky to have you, John. Stay Strong 🙏🏻✨️
A video like this would have been wonderful when my parents started acting out these problems. Maybe I would have understood it earlier. Thank you for allowing us to see what you and Heather are going through.
You’re an inspiration to me. I’m at the stage of life when you start to “worry” about what might happen to me or my husband. This video has given me practical and emotional courage should that arise. I’ve experienced dementia first hand before but spousal decline is a different scenario. Well done on all you do and how you do it. 😊
Thank you John for sharing all of your information 🤗 I don’t live very far from you in Sydney , Nova Scotia. I lost my Dad in November 2020 to dementia. I wish that I had documented the last few years of his life; emotionally I just 0:01 couldn’t do it . Hats off I to you for your bravery. With each and every of your videos that I watch, my heart is with you & Heather. I don’t need to tell you how difficult this disease is to deal with but you are doing an amazing job . My dad was a math genius, head of the math department at my high school(Sydney Academy) he was a true gentleman, a wonderful father, very strict but loving.He was also a very talented woodcarver. I have some wonderful memories of him & that’s how I live my life. I keep him in my heart, my soul every day❤ He never forgot myself, brothers or sister or my Mom & he still had a sense of humour. He was an eternal optimist & so am I. My Mon is a retired nurse & opted to care for him at home but it became too much for her. We all despised sending him to a nursing home , but it came down to risking my Mom’e health as well. Always know that you are a wonderful husband & a great caregiver to Heather. It’s frustrating & rewarding at the same time. Looking forward to more of your videos . I would love to meet you & Heather 🩵🩵♥️♥️
I love this video of yours John, you are extremely kind and patient, a very rare trait to find in most people at the best of times. Thank you for sharing your valuable information 🤗
I guess the blessing is that the person doesn't have any idea what is going on since it starts out fairly slow. I can remember my sister when she first thought her memory was off, she was reading books on how to improve memory, eating healthier, walking more , but still declined. You are making life as enjoyable as possible for Heather and she sees that in your smile and laughter, even if she is unable to respond or totally connect all the dots.
I have seen the panic and scramble initially...even them trying to cover up things, misplaced, can't find, getting out if the car, door open taking in groceries, then just sitting in kitchen...never finished. In hindsight that us a sad time that we all can identify with. You hope you will know and notice, to correct, but sadly eventually have to accept. Horrible. A friend had thus happen to Hus mother-in-law, so they unhooked her stove. Burned through pans, fire dept, etc. Then bathing stopped. Not objecting to it, just forgotten so put on her daughter's schedule. The day came when the 3 of them had a planned drop off at alz assisted care facility, she was ignoring--really simply not grasping, the motions they went through. Took her into her familiar decorated room, put her tv on. Put her in bed. She fell asleep and they visited her daily starting then. She never asked to go anywhere, surprisingly no temper. never asked about home either. Not a where am I. Nit a when are we going home, not a peep.fir another year when she stopped talking altogether, then non-recognition, sat. Never looked out window, maybe blind. The whole floor of olds sat around a piano or stereo, singing every word of 1970s songs or church hymns, until one by one. They slowly froze off. they were nonverbal otherwise.
@@CynthiaWord-iq7in yes it’s sad, my sister was in the process of being diagnosed at 71 but it had been evident for about 5 years. She could no longer drive or properly dress herself but resisted anything was wrong. She had a stroke and never regained consciousness which I saw a blessing given the road she had ahead of her.
You were very wise to keep a journal of things! I'm sure that was helpful for the healthcare workers. You painted a picture of what you both were living with day to day!
You are walking the path of Love, moment to moment. And you are demonstrating what it looks like to be an authentic, kind human being. Praying for you & Heather.🙏🙏🙏
John, I can appreciate what you are going through. My father was diagnosed with PPA and there were so many subtle warning signs that we just discounted. The news confirmation was devastating, of course. He spoke seven languages, was a chemical engineer and lived for cryptograms, etc. He struggled to speak and it was frustrating just seeing him decline. I know that the time you spend with Heather will pay back in spades and, odd as it may seem, you will miss these times as well. Take care.
Thank you so much John for helping us all while you are going through your journey with your sweet Heather. You are a blessing💝💝 I hope I can be half the person that you are.
Oh John, I'm tearing up, we are dealing with the same. I try to create happiness whenever I'm around my mother, she is almost like a 4 year old now, but every few weeks something new and terrible happenes and it takes you by surprise. Then its back to the drawing board to make new plans. I learn as much as I can from other people so that its quicker to find solutions. She was an incredible woman and we love her and will do our duty.
Thank you so much for taking the time to do this particular video. I can sure see why she focused on aphasia, when she understood what aphasia was, instead of dementia. And I guess it’s a blessing the very disease she had kept her from worrying more than she did. Regarding the “talking head” aspect of this video, do not worry about it! I don’t think any of us subscribers are here for fancy editing. And at least in my opinion, you do not go on too long or repeat too much. Take care and see you in the next one.
Morning John and Heather 👋👩❤️👨 What I appreciate about your channel is that it's a teaching tool as well as a channel of hope ❤ My journey is basically alone, not saying for attention or anything but is way it is despite being married What you said John about keeping it simple k.i.s.s 👍 and accepting what you can't change is or trying to be my new outlook lol.. I get alot of tips watching each video as I am my own caregiver until its no longer possible..thankfully I'm strong enough still 🙏👍
So heartbreaking. You are doing great with Heather, taking it as it comes, with a lighthearted touch. Although Heather can't express it, she knows you are there for her. ❤
John, our family is having a very similar experience with our mom. Her first symptoms were having a hard time finding the right works, and eventually having a hard time following conversations. It took a long time to get the right diagnosis of PPA dementia. Like your Heather she is very precious to us and it is our goal as a family to keep her with us here on our family farm. My siblings and I work together to care for her as a team. So we can support each other as we move through this process. I hope you have a good support system, and I wish you well. It seems like your Heather has always been a beautiful soul. She is blessed to have you as her life partner. Take care , and thank you for sharing your journey.
Been watching some of your videos. Like your journey, mine is just beginning. I believe that mine is coming from another area though. My loved one has severe COPD and despite him being on oxygen I believe that his brain has been affected by the lack of oxygen and has started that decline. It’s not horrible but the lack of recognition, remembrance and clarity on everyday issues is beginning to be apparent. He is 75 and I’m 72. It’s VERY difficult for me as I’ve had to take over everything and I feel like I’m slowly losing control of how to handle this. Thank you for showing me that the way forward is thru understanding and grace
Wow take my hat off to you John and Heather for having the love ,courage and compassion to learn and live with what you's are going through . Hi Heather hope you having lovely day Cheers Jenny 🐢💖
We're all rooting for your family and our sending our heart felt wishes your way. I really appreciate all that you share, I'm in my early 70's and my husband is 4 years older and both of us have members who died from dementia. When we remodeled our house 7 years ago we added a care giver apartment just as insurance so we could stay home till the end of life should we have a debilitating illness. If I'm ever in your situation I hope to have the kindness, patience and compassion you do.
so my better half works with the elderly, mostly dementia related, here in mtl. she's been doing it since before we met 12 years ago. i hear the stories but most, if not all, have a missing link. the question i always wanted an answer to was, " how this must affect those closest to the person suffering with this illness. i thank you for shedding light on this topic and clearing up a few things for me. i have only seen 2 of your videos so far but have subscribed. you seem very much like someone i would love to have as a friend. Heather is lucky to have you. most of the stories I've heard from my wife do not include someone like you. its truly unfortunate that you have something to be very proud of that is probably the last thing anyone would want to be proud of. that is, of course, taking care of a loved one, as you seem to be doing, under very difficult circumstances. i will keep watching because i believe that your story is equally, if not more, important than Heather's. you're right, you're not alone. this guy in mtl, that is so far, only indirectly touched by this horrible illness is watching you and is thinking of you.
This must be incredibly difficult for you . And yet your videos are humorous at times and kind. Any one of us in our late 60's early 70's could be in this position at one time. By sharing your story your helping some of us prepare for and understand dementia more. Cheers from Northern Canada.
Excellent perspective on Heather and your journey. You mentioned you were going to edit the video. The video, as is, is very informative and gives a timeline. Amazing how quickly Heather has declined. I applaud you for your courage to Keep It Simple. Sounds easy but it’s not.
You John, are awesome. Please keep us updated. So sorry for her loss, and yours. You are a good man.
Heartbreaking. Heather doesn't know her condition but is lucky to have you as her husband. John, you are doing a wonderful job taking care of her. ♥👍
My mom don’t know either
@@user-qb8qm4mp5n thank you so much.
@@user-qb8qm4mp5n I agree 👍🏻.
I agree. He's amazing.
If she could keep one, Heather’s diary would read, “Another great day with my guy, where I am clean, safe, and happy. He is the best.” We’re at the point where we have to let all of the unspoken words matter - feel them on the inside and know that we are still loved. ❤
❤️
What a beautiful comment Lee. ❤
My mom came home from the mall with a stranger and said her car was stolen. Two weeks later, the police finally contacted my dad about his car being in the lot for some time. That was the end of her driving. My dad did an excellent job taking care of her.
Thank you dear Heather. There’s a TH-cam army of us holding you both up in prayer. ❤
My dad is now 85 and I started noticing something was “off” around the time of the big 80th birthday my mom was throwing for him. His eyes looked …. A little “spaced out.” Then, i remembered how he had paid every bill and done the annual taxes my parents entire marriage. 60 years. But, one year, he just didn’t do the taxes. No explanation. So, my mom rushed to figure it all out and was dumbfounded as to what was going on. This man had run a company for 60 years. Then, he started asking who the next door neighbor was; how to operate his ‘cell phone’ (it was a cordless house phone 🥺), etc. Now, he pretty much is just ‘there’ but he’s still my dad ❤. I did have a big cry last night when no one was around. I deeply miss his personality, sense of humor, his insight, his advice. It’s devastating. And, I know my mom deeply hurts & misses her best friend. 🥺🙏🏻 prayers to you and everyone suffering from dementia.
I am sure that you have far more great memories of your father and I hope you can dwell on those good memories other than how he is spending his last year's. This is probably easier to do once he is finally at peace. My FIL had alzheimer's but he was lucky, his hand was taken from a heart attack, yes we consider him lucky. His family members lived for years with this disease but Art lived with it for 5 years after diagnosis. Absolutely devastating worthless disease along with many other diseases. I wish you well on your journey and your father's.
Good post Scarlett.
A ten year span for mom and I, noticing her apathy and final demise
@@jeanineacree6355 🥺❤️🙏🏻
True love lasts forever
My husband has dementia/Alzheimers and his whole personality has changed. He's angry and frustrated where he never used to be. Thanks for sharing
I am living the same.
I am in Denmark, and we refer to dementia as an illness that mostly hurts the loved ones of the patient. Your story seems to be an example of that. By the you realized that something was wrong her brain was already so impacted by the illness that her emotional reactions were flattening. Thank you for sharing. We all need to be more aware of dementia in aging population. Best thoughts from Odense, Denmark.
My whole family eventually gets dementia. I am noticing things with myself as i age.
My husbands whole family has had it and the last uncle on his mums side now has it. It's a truly awful illness for the family.
That is a good way to think about the effects of dementia.
@@Junichild They say if you have dementia in your family you have 50 % chance of getting it as well. You can get a test to see if you carry the gene and then take necessary precautions accordingly.
The long goodbye 😢
Even though Heather can't reciprocate your affection, if you need to hold her hand or feel her hug, do that. It's important for your well being to still feel connected to your spouse. You are doing such a great job of staying upbeat and keeping her safe and happy. ❤
We should all be so lucky to have someone like John taking care of us. You're a remarkable person who has been given a big caregiving task. Sending supportive and peaceful thoughts your way!
Hi John , I am in England , and have worked with people who had dementia . You are doing a wonderful job , not only with Heather but sharing such valuable information to help many people on a similar journey... much love and respect x
Thank you so much for your vote of confidence.
The best advice ever , "keep it simple, lower your expectations". It means so much to me right now. Thank you so much❤
I gotta say: you are a wonderfully refreshing reminder that good people still do exist. Ty. 🙏🏻❤️
You're doing great at loving your wife John!
This is such an important video to make. My oldest Aunt was diagnosed last year and my heart just broke for my cousins.
I’m a nurse and know all too well from a health care professional perspective.
My Mom passed a few months ago due to cancer and I realized right away that my Mom’s other sister was acting strange.
She is still going through an assessment. However I suspect Lewy Body dementia in her case.
My cousins were very concerned about her behaviour, even blurting out during the eulogy and I kindly addressed her after she repeated what I said about her and my Mom being so close and agreed with her.
My Mom was the youngest in her family and was so worried about her sisters. ❤
It’s such a cruel disease. There is some medical research ongoing that looks promising.
Keeping Heather active and engaged , even literally taking her hands in yours to assist her in brushing her teeth as long as you can.
John, your videos should be shown to student doctors, nurses, LPNs and CCA’s programs as a teaching tool.
As health care professionals, I always tell students and new graduates that we don’t just take care of a patient, but their loved ones as well.
Medical treatment is only a part of care. Compassion, understanding and empathy is essential. ❤
Thank you so much for your heartfelt comments, and especially complementing me on these videos. I sure didn’t expect any of this reaction and I appreciate every single reply.
I love what you said about taking care of the loved ones, as well. It is very true, and I don't know how much of this is covered during medical training, but it really is an important part of it.
Clean, safe, comfortable and HAPPY! Great addition (John) and a good goal because so much of this caregiving is stressful even when we stay as calm as possible. I still think that in addition to the EXCELLENT comments from you, a health care professional, the loved one / caregiver often knows their person the best. When we are silent, calm, and at peace then we can pick up on the fears or concerns that our loved one may have trouble communicating. We can also get tips from them about what makes them happy and we can then be happy, too! And, for our family, it seems to be a constantly changing and evolving situation so that keeps me on my toes. In addition, today, I learned about a resource in the U.S. (from admin at the neuro's office) called Aging and Disability Resource. There is so much information that the pros know but some of us family members have very little knowledge. So, this resource may be helpful in educating me about the specific diagnoses (we have several things going on) even though there are certainly unique and varying speeds of progression / decline. Today, I learned that a lot of my extreme concerns about seemingly super fast decline is ... really just a part of the expected path. Things are advancing and my loved one is right, 'it could always be worse'. Thanks to the entire TH-cam community for sharing inspiration, knowledge, calm peaceful strength and reminding each other that you are not alone.
I believe my husband has dementia. However, I can not get him to go to the doctor. He knows something is wrong but is scared to find out.
I just keep researching and do my best not to get frustrated as he is not always kind with his words but doesn't appear to know he's saying them.
Keep up your strength and shower her with love when she allows it.
Thank you for sharing. It makes me feel a little less alone.
I don't have words 😢 you're doing a wonderful job caring for Heather. Stay strong!
John that was very emotional and a trip down memory lane for some of us. Clean, safe and happy is the essence of great care. You sir are doing an outstanding job and clearly Heather is your world. Take care and we your subscribers are right here. God bless from Lincolnshire England.
John is doing an excellent job at caring for Heather. It’s a 24/7/365 job. He keeps her clean, safe, and comfortable.
I have been following your channel for a little while now. My heart goes out to the both of you. You're doing a remarkable job caring for your wife.
As you were speaking, I felt like you were telling mine and my husband's story. He received a diagnosis of early onset dementia, leading to Alzheimer's Disease; he was 60. I remember him saying that he had brain fog. About four years after his diagnosis, he had a fall down our basement stairs, which resulted in being brought to the hospital and eventually to long term care. He used to be a music teacher, and he was a fabulous piano player. Now he doesn't play. I hope to keep listening to your vlogs. I found this very helpful in my situation. Thank you for sharing.
Thanks for sharing your story as well… I’m so sorry for what happened.
I walked this journey with my parents starting in 2014/15 when my mom was diagnosed with dementia. It was awful. It was made worse when my dad was killed by a drunk driver near the end of 2016 and I was left largely alone dealing with my mom’s care. She passed in December 2021 after a long battle.
I feel for you and all you’re going through and pray that you have the strength, comfort, and support you’re going to need. ❤
I thought the part where you said it isn't about improving life, but about making things comfortable was touching. I am still young and can be impatient, especially with my parents and older relatives. I can see myself getting frustrated with things not improving if I were a caregiver for someone. I will try to remember your kindness and wisdom when I am in the position of having to care for a loved one.
What a touching comment ♥️
My husband is in stage 6 now. I am now actually thinking of making burial arrangements. He has begun to sleep a lot during the day now and wakes up confused.Still says he’s getting better. Just started year 15. This disease changes both the patient and the caregiver. Acceptance is hard but more than necessary. It will save your life. Carry on❤
❤❤❤❤
How do you know what stage your husband is in? My husband is in an assisted living facility with dementia that is slowly getting worse…
@@suzannereeves7768 there are seven stages with subgroups. If you search dementia stages you can get a lot of information,but it was his palliative care doctor who deemed he is now in stage 6e now which is moderately severe dementia.
Thank you so much for sharing your journal John. Your level of acceptance and engagement is reflected in Heather’s level of contentment. Your videos are a gift to the community.
My dear friend. Thank you for your video. As I said before, I take care of my dad who has dementia and is bed ridden. I get him up with a supplied lift every morning for breakfast. He stays in bed for supper which is my time to really enjoy my dad. We talk about some beautiful pictures my sister posted on his wall to enjoy. He talks to them in such an affectionate way. It’s our time to really enjoy the moment.
Mom has severe short term memory loss, but we still enjoy watching murder she wrote and other old series.
You are a good man. Keep sharing these special moments. They help the rest of us clearly understand that we are not alone.
With love from Pincher Creek, Alberta. ❤
As a family we went through this with my father in law. It started sometime many years ago but his decline worsened rapidly after he suffered a TIA or possible stroke. My mother in law tried to keep him at home as long as possible but at some point he became angry/argumentative/and they began to physically fight. Shortly after we found out about this we investigated senior care homes which in our area of the US are not exactly advanced facilities. He lost his battle with dementia after contracting Covid and pneumonia in February 2024. My prayers to you and Heather. It’s a devastating disease which has such stigma attached to it. I have so much more I’d say but you already understand everything as it is your daily life. I think of you two often. Prayers and light go out to you from South Georgia in the US.
This is the real meaning of the phrase "in the good and the bad" I suppose... Only a few people can handle the consequences of the second part of the phrase, you are one of them. You are good man, stay strong!! A big hug from Italy to your family.
One of the good? things about dementia…not that there’s anything good about it…is that the person suffering it doesn’t always feel distraught about what’s happening. In my mom’s case, I remember her telling me about her hallucinations. At first she saw shadows, then eventually “realized” it was us, her children, and our childhood dog, Patches, coming to visit. She just accepted this matter-of-factly. All you can do is try to keep things light and cheerful, as you’ve been doing. Thanks for the videos.
Exactly
My grandmothers last writing was, ‘It is getting dark outside.’ I felt that things were getting dark for her also.
I am a retired nurse. I specifically went to Boston for Alzheimer’s/Dementia specific training It’s as horrible disease. I worked with dementia patients until I retired. As partners husbands/wives that’s our responsibility to take care of our other half. Ty for taking care of her. U wouldn’t believe things I’ve seen with family members.
You are truly a loving and caring man doing all that you can to be by your wife’s side. Many hugs and prayers…please stay strong. ❤
Thank you for making this video. It struck many chords for me. My husband was diagnosed at 57 with YOD, 18 months ago, and a very similar progression as that of your wife, with the aphasia early. He was a teacher until 2021. The emotional flatness, the vacancy.. it is a lonely experience for the partner left behind. My husband was aware in early 2022 that there was something wrong, that he could not think. Now, I really don't know what he thinks or understands. I like your term "cognitive horsepower". Like you, my goal is to keep things calm peaceful, positive and reduce my expectations. Thank you again I hope you will keep sharing as you are a little ahead of us on this path and very relatable. ❤
Sounds like exactly what we are going through right down to the timeline. It’s so difficult. I’m glad you could relate to my videos. If for nothing else then to know that you’re not alone in this. Take gentle care of yourself and I wish you well going forward.
Very interesting. I’m so glad you covered this. As older couples we question each other when we forget something or make an odd statement. We just never know but hearing you say that she was making mishaps every few days was a clear sign. Thank you for sharing.
I wish I had seen a video like this in 2019. My husband was acting erratically and was ultimately diagnosed with vascular dementia. He wouldn’t give up his driving and he became combative and delusional at the end. He passed away in 2020, so a relatively short duration for the disease, although in retrospect I think I missed some of the clues earlier on. We were married 40 years. You are doing a wonderful job and Heather seems like such a sweetheart!
That's terribly sad, poor beautiful Heather. But she's also incredibly blessed to have found a loving husband like you
Thank you for your loving honesty. My sister has had ms for @ 25 years- it’s progressive and such a cruel disease, like many. I love the way you treat your “ wife” , sadly she’s no longer that- I really like to see her doing the Heather chuckle when she is happy. Good luck and stay strong and positive. ❤️🇦🇺
Having gone through this with my husband it was frightening to watch the transition of this disease.My saving grace as a caretaker was to meet him at where he was and to let go of any expectations of him being who he once was.I cherished the little moments of memory and recognition and was very grateful for the moments of connection.
Very well said… Meet him at where he was! I love it, thank you so much.
Agree. My mum’s first symptoms were so slight. She was retired RN, raised six children, it was hard to see anything wrong with those beginning changes. We attributed to pure memory aging. She was frustrated, and it came out in anger. I was living with her for several yrs prior, we traveled together etc, I’d starting doing majority of driving. She always asked me why I drove different routes than she did. She finally confessed to me after one bitter altercation, that she was afraid she would not remember how to get to my brother’s house. That was a true eye opening moment for me. I realized that most of her frustration was due to her “knowing” something was wrong. I started living in her world, being present in the moments of her life, and the last few yrs were most memorable. Not easy years, and we lost her in 2022, but it was the greatest privilege of my life to care for her. I learned so much, and miss her every day. She was in assisted living for last couple yrs, and I now volunteer at the same facility. Always living in “their” world.❤😢
I am so sorry for your heartfelt loss.of your mother.Thank you for your loyalty and love you blessed your mom with in her difficult and isolating journey in dementia. I too took away from the caretaker experience feeling so privileged that I could be that loving support and anchor for him.I suppose to them we were that bright light of a lighthouse in a raging storm that brought them back to safety and security..Tale Care💞
This is SO incredibly helpful. My partner is showing some early signs of dementia. Thank you for your excellent tips & information.
The progression of her decline was so fast! Sounds like you are doing a great job of taking care of things.
My heart just breaks from you, I am also so impressed on how well you handle all of this as it’s the hardest job you’ll ever have , it takes a very special person to do it as well as you do. 🤗🤗👍👍🙏🙏
after taking the covid vaccine I had a severe reaction and it was all cognitive. I couldn't retrieve missing words. In our normal processing we stop and pause if we forget a word and then it comes to us, but I couldn't find out where to even search for a forgotten word. it took many tries to put things away and I would have to try again until I got something put away in the right place, it was exhausting. I would find eggs in my kitchen cabinet instead of the fridge. it was the most horrible thing I ever experienced. I worked as a family liaison for a woman with dementia years earlier and I would watch her struggle to tell a story. she would look off and then return with a new conversation. I understood what she was feeling after this experience. it was horrible. I am thankful you have a great understanding of this disease. I witnessed a child of the woman with dementia argue with her about her memory issues instead of allowing her to remember something the way she remembered. your videos will help others interact with their loved ones.
I hope my husband would be like you if I had dementia. You are an amazing man❤️
I was wondering how it started with Heather but I didn't want to ask .Thank you for sharing with us.Its all so sad and you are a very good husband and man for taking care of her the way you do .Praying for you and Heather I can see how much you love Heather .
Stay strong brother. Went on the same journey with my Mother in-Law. In the end, death was a release for her and for my wife and myself, 8 years from the initial diagnosis. Truth be told she had been gone many years before she finally left us. If there's any consolation for us she never got know the grief that her husband of 60 years had already left us. Stay strong...
The algorithim brought me here from Trey and Theresa Pippen's channel. For anyone going through caregiving, there is a lot of information in these channels from the comments alone. The things I can tell you from experience is you can't second guess dementia. There are many forms and they don't follow a playbook. The different forms present differently on a person to person basis. Trust your intuition, you know them probably better than anyone. Let them know that you've got their back and love them unconditionally. Keep them at home as long as you can and if you can't go to visit them often. Do simple things with them. Thanks for posting this video and sharing your wife's and your story.
Very good comment! They don’t always follow the playbook… I find so much of the mainstream dementia information is completely unreliable in our journey here. For that reason, I’m just making it up as I go.
@@JohnvanGurp A hospice nurse is the one who told me to trust my instincts when caring for my mother. It's a difficult journey because everything we know as being logical goes out the window. All you can really do is roll with it. Wishing you and your family the very best!
@@sydneyevans2637 🙏
I just found your video. I am currently going through this with my sister. She lost her husband back in 2016 to Alzheimer’s. In 2018 i told her she needed to see a neurologist because something was wrong. It was a real process! She lived alone so it took a lot of work and undercover acts to figure out what was going on. In 2022 I was running to and from her house several times a day to make sure she was eating, giving her medication because she was confused about when to take what. She stopped bathing, started having accidents, apathy set in. I took her keys off of her in early 2022, so I had to drive her everywhere. She couldn’t shop on her own because she couldn’t figure out what to eat. She only wanted junk food, all sweets. Started having more significant speaking issues. In December of 2022 I had to put her in memory care at 63 years old. It killed me. I tear up just typing this. She wasn’t safe at home anymore. We got a suspected diagnosis of FTD (frontotemporal dementia) and aphasia. Fast forward nine months and she couldn’t speak anymore. It’s been about a year now since she could talk. Her new diagnosis is bvFTD (behavior variant) and global aphasia. I still pick her up at least once a week and take her for a ride. I speak to her like normal, but she can’t answer and doesn’t understand what is being said to her. It’s a rough ride every week. Such a cruel disease! I think you are very much like me, just going with the flow. Nothing to stop it, so you just make the best of it. I’ve videoed my sister and think about posting it for awareness. Anyway, you’re not alone.
So sorry for the stress and anxiety you had to go through… It’s rough.
You are doing a wonderful caring job. Please remember to take care of yourself. Get a respite when you need and accept help when offered
Heather is so very lucky to have you, my step mother put my dad in an old people's home at the first signs of dementia. He lived there for about 5 years . I live about 10,000. Miles from them, but did fly back often to visit. Many people either can't cope or refuse to cope with a declining loved one. God bless you.
Your Heather is blessed to have you. My husband's temperament was much like yours. He was always the one talking me off the ledge when I got upset or worried. He died from colon cancer 8 & 1/2 years ago. After he was gone, I would channel him whenever I got upset or worried about something - WWMD (What Would Michael Do?) I send you prayers of support for the months and years to come. 💙
In 2020, My husband was diagnosed with early onset Alzheimer’s. Symptoms pretty much started a couple years prior to that starting with not being able to do his job. Jeff was diagnosed and has been on disability since 2020. In the past year he has quit driving and aphasia is rearing its ugly head. Jeff knows he has Alzheimer’s but does not want it mentioned. These dementia disorders are so sad. Thank you for sharing your life.
I’m so sorry to hear that, you’re probably going through the same thing. I’m dealing with here. Take gentle care.
Your calm demeanor is so impressive. My husband, 60, was just diagnosed with early onset Alzheimer’s. I had alarm bells a couple years ago but he refused to go to the doctor. He had memory and personality changes. Severe depression. I finally got him to go to the doctor. He tells me he feels like he is losing himself and is quite aware and it’s heartbreaking 💔. Maybe a blessing she was more unaware of the severity because listening to the anguish of him talking about how he doesn’t want to forget us is sometimes too much for my heart.
Powerful episode John. The only silver lining I see for someone with full on dementia is that they are usually unaware of it. This may be a sliver of a silver lining for the caregiver as well. You don't condescend to her, patronize or baby her. Total respect! THAT'S LOVE and WISDOM on your part. Stay strong. You are not alone. ❤
John, you are truly a very good man! Your love, patience and devotion to Heather is so lovely to see. We have walked this long , sad road with both parents. Heather is blessed to have you ! I should say you are blessed to have each other❤❤❤ God Bless You Both!!
John I recently came across your blog and am now a subscriber. I think your approach to this difficult situation is absolutely remarkable. I feel for you both as well as your children, family and friends. It's like a slow, insidious loss of your loved one; albeit not so slow. I'm quite sure that you are helping so many people who are in similar situations, which is commendable. I like your statement about this being palliative care. That word is most often associated with cancer but it is completely appropriate for dementia care too. Your intelligence shines through in the way you frame all that is happening. You are a wonderful husband and a remarkable human being. Please know that people's thoughts and support are with you. YANA right back at you❤
It’s so difficult to watch your loved one disappear. I’m sorry, John. But you are so kind to her. It must be terrifying to realize something is happening to you, but it is also terrifying to watch it happen.
Your wife is very lucky to have you as her husband and make sure you take care of yourself and get some time for yourself💕
you are a amazing man.
remember to look after yourself aswell ....bless you both
Everyday with dementia is a learning experience, not one day with it is exactly the same. My aunt went through it and I've experienced it all unfortunately.
Thank you John. I respect how you are treating Heather with much love and dignity.
John you are an excellent husband and caregiver. Keeping it simple is wonderful. I once was a caregiver for a lady with dementia. She forgot that her husband had died. Her children were adament that we keep telling her that her husband had passed. The look on her face was unbelievable. I never would tell her. Enjoy your time with Heather everyday. You both are beautiful.
John Thank you for helping other couples going through this same illness.We are here, stay strong.❤️💙💐🇨🇦
Im 49. My mom is 73. Shes kinda having some issues. I dont even like saying it. Afraid by saying it, it will make it get worse sooner. She had some spell few yrs ago. Ever since she's had flat affect. Its been hard for me cause it feels like I'm only one that cares. I know its not her fault. I just need my mom to be my mom. I've had her every single day of my life and I dont want that to ever change. I get scared of the future but God's grace is sufficient. Im glad I found your chan. Its helping me try to accept what I've got going on.
Palliative care. Wow, that hit home for me. Keeping my Dad, clean, safe and trying my best to calm him down. He is in a nursing facility now. I can tell when he is sundowning right away. He works himself up into a lather about things. He still can communicate pretty well, but is delusional about a lot of things. The other day, he was totally convinced that he had not eaten all day and that they are deliberately starving him. I got on the phone with the nurse and she assured me that she witnessed him eating all his meals very well. He did pick a fight with another man at the dining room table but they separated him and his food was never touched by anyone (he claims, they steal his food from him all the time) and that afterwards he finished all his food. I am getting to the point of not looking forward to picking up the phone to talk with him, cause it will be one crazy story or another that he will come up with.
HUGS John.....🤗
Been there and done that. I started off with my Grandmother and senile dementia taking care of her. Next my father-in-law had Alzheimer's and at the same time his wife came down with Vascular Dementia. After their deaths I was care giver for my Aunt who had lung cancer. This included running her business. Then both of my parents got to the age where they could not longer drive.... They both had some dementia. After my father's death I had to care for my mother for the last 12 years. Today my mother is 98 years old, has serious dementia, bedridden and requires care givers 24-7. By the way I am 71 years old myself and have to run the family business. I have myself experienced everything you are going through...... I have spent many nights in the ER room..... I have been lucky enough in my life to have the time to take care of my family.... Good Luck
Bless you! That is a lot of caregiving. You have been a wonderful blessing in their lives. Caregiving AND running a business is an enormous amount of effort. You are an amazing person. ❤
I, too, have been fortunate to care for many family members as well for varying lengths of time. Although stressful and consuming, it truly is a gift to be able to care for family in-need. Many loving, caring, and touching moments take place. It helped me to feel good by fulfilling those purposeful tasks given to me. GOD bless you for your kindness and sharing your skills and talents.
Thank you for sharing 💞 Its interesting that Heather mentioned feeling like she had brain fog. It must have been extremely scary for her in those early days. She's very lucky to have you, John. Stay Strong 🙏🏻✨️
Good morning from the US. Just drinking my morning coffee ☕️ and listening. Bless you and Heather ❤
A video like this would have been wonderful when my parents started acting out these problems. Maybe I would have understood it earlier. Thank you for allowing us to see what you and Heather are going through.
You’re an inspiration to me. I’m at the stage of life when you start to “worry” about what might happen to me or my husband. This video has given me practical and emotional courage should that arise. I’ve experienced dementia first hand before but spousal decline is a different scenario. Well done on all you do and how you do it. 😊
Thank you John for sharing all of your information 🤗 I don’t live very far from you in Sydney , Nova Scotia. I lost my Dad in November 2020 to dementia. I wish that I had documented the last few years of his life; emotionally I just 0:01 couldn’t do it . Hats off I to you for your bravery. With each and every of your videos that I watch, my heart is with you & Heather. I don’t need to tell you how difficult this disease is to deal with but you are doing an amazing job . My dad was a math genius, head of the math department at my high school(Sydney Academy) he was a true gentleman, a wonderful father, very strict but loving.He was also a very talented woodcarver. I have some wonderful memories of him & that’s how I live my life. I keep him in my heart, my soul every day❤ He never forgot myself, brothers or sister or my Mom & he still had a sense of humour. He was an eternal optimist & so am I. My Mon is a retired nurse & opted to care for him at home but it became too much for her. We all despised sending him to a nursing home , but it came down to risking my Mom’e health as well. Always know that you are a wonderful husband & a great caregiver to Heather. It’s frustrating & rewarding at the same time. Looking forward to more of your videos . I would love to meet you & Heather 🩵🩵♥️♥️
Sorry for the typos , was trying to hurry !
I love this video of yours John, you are extremely kind and patient, a very rare trait to find in most people at the best of times. Thank you for sharing your valuable information 🤗
Thank you
I admire you greatly John, you are both in my prayers🙏🏻🙏🏻🙏🏻💞💞
I guess the blessing is that the person doesn't have any idea what is going on since it starts out fairly slow. I can remember my sister when she first thought her memory was off, she was reading books on how to improve memory, eating healthier, walking more , but still declined. You are making life as enjoyable as possible for Heather and she sees that in your smile and laughter, even if she is unable to respond or totally connect all the dots.
I have seen the panic and scramble initially...even them trying to cover up things, misplaced, can't find, getting out if the car, door open taking in groceries, then just sitting in kitchen...never finished. In hindsight that us a sad time that we all can identify with. You hope you will know and notice, to correct, but sadly eventually have to accept. Horrible.
A friend had thus happen to Hus mother-in-law, so they unhooked her stove. Burned through pans, fire dept, etc.
Then bathing stopped. Not objecting to it, just forgotten so put on her daughter's schedule.
The day came when the 3 of them had a planned drop off at alz assisted care facility, she was ignoring--really simply not grasping, the motions they went through. Took her into her familiar decorated room, put her tv on. Put her in bed. She fell asleep and they visited her daily starting then.
She never asked to go anywhere, surprisingly no temper. never asked about home either. Not a where am I. Nit a when are we going home, not a peep.fir another year when she stopped talking altogether, then non-recognition, sat. Never looked out window, maybe blind. The whole floor of olds sat around a piano or stereo, singing every word of 1970s songs or church hymns, until one by one. They slowly froze off. they were nonverbal otherwise.
@@CynthiaWord-iq7in yes it’s sad, my sister was in the process of being diagnosed at 71 but it had been evident for about 5 years. She could no longer drive or properly dress herself but resisted anything was wrong. She had a stroke and never regained consciousness which I saw a blessing given the road she had ahead of her.
This is one of the best blogs on Dementia. Your use of the term Palliative Care with a heaping helping of KISS. That’s perfect
What a very kind and generous compliment, thank you!
Nice explanation. It is palliative care. Take care of yourself!
You were very wise to keep a journal of things! I'm sure that was helpful for the healthcare workers. You painted a picture of what you both were living with day to day!
I am learning so much from your TH-cam videos. Thank you John. Stay strong John and Heather. ❤
Can’t begin to tell you how much I appreciate this channel! Thank you so very much!!!
I’m so happy it speaks to you, thank you.
By far, and I haven’t finished watching, this is the most informative video ever! Thank you for sharing. God knows, He sees you.
Matthew 25:23
You are walking the path of Love, moment to moment. And you are demonstrating what it looks like to be an authentic, kind human being. Praying for you & Heather.🙏🙏🙏
John, I can appreciate what you are going through. My father was diagnosed with PPA and there were so many subtle warning signs that we just discounted. The news confirmation was devastating, of course. He spoke seven languages, was a chemical engineer and lived for cryptograms, etc. He struggled to speak and it was frustrating just seeing him decline. I know that the time you spend with Heather will pay back in spades and, odd as it may seem, you will miss these times as well. Take care.
No better way to honor heather than to share your story about being a spousal caregiver. Blessing to you both ❤
Thank you, that’s the way I see it too.
Prayers for you and Heather, I honestly believe it is harder on the loved ones than it is on the one with dementia. Stay strong!!!
I took care of my mom for 13 years about the last three were the worst but they were the best. Also God bless you and Heather.
You're a very good guy, John. I think about you and Heather daily at this point. Sending positive thoughts to both of you.
Thank you so much John for helping us all while you are going through your journey with your sweet Heather. You are a blessing💝💝 I hope I can be half the person that you are.
Oh John, I'm tearing up, we are dealing with the same. I try to create happiness whenever I'm around my mother, she is almost like a 4 year old now, but every few weeks something new and terrible happenes and it takes you by surprise. Then its back to the drawing board to make new plans. I learn as much as I can from other people so that its quicker to find solutions. She was an incredible woman and we love her and will do our duty.
Thank you so much for taking the time to do this particular video.
I can sure see why she focused on aphasia, when she understood what aphasia was, instead of dementia. And I guess it’s a blessing the very disease she had kept her from worrying more than she did.
Regarding the “talking head” aspect of this video, do not worry about it! I don’t think any of us subscribers are here for fancy editing. And at least in my opinion, you do not go on too long or repeat too much.
Take care and see you in the next one.
Morning John and Heather 👋👩❤️👨
What I appreciate about your channel is that it's a teaching tool as well as a channel of hope ❤
My journey is basically alone, not saying for attention or anything but is way it is despite being married
What you said John about keeping it simple k.i.s.s 👍 and accepting what you can't change is or trying to be my new outlook lol.. I get alot of tips watching each video as I am my own caregiver until its no longer possible..thankfully I'm strong enough still 🙏👍
"a teaching tool and a channel of hope" beautiful
@@hvangurp thank you 🥰 that made my day🤗
Sending you love. I'm glad you're here and thank you for commenting. What you have to say matters to me. ❤
So heartbreaking. You are doing great with Heather, taking it as it comes, with a lighthearted touch. Although Heather can't express it, she knows you are there for her. ❤
John, our family is having a very similar experience with our mom. Her first symptoms were having a hard time finding the right works, and eventually having a hard time following conversations. It took a long time to get the right diagnosis of PPA dementia. Like your Heather she is very precious to us and it is our goal as a family to keep her with us here on our family farm. My siblings and I work together to care for her as a team. So we can support each other as we move through this process. I hope you have a good support system, and I wish you well. It seems like your Heather has always been a beautiful soul. She is blessed to have you as her life partner. Take care , and thank you for sharing your journey.
Been watching some of your videos. Like your journey, mine is just beginning. I believe that mine is coming from another area though. My loved one has severe COPD and despite him being on oxygen I believe that his brain has been affected by the lack of oxygen and has started that decline. It’s not horrible but the lack of recognition, remembrance and clarity on everyday issues is beginning to be apparent. He is 75 and I’m 72. It’s VERY difficult for me as I’ve had to take over everything and I feel like I’m slowly losing control of how to handle this. Thank you for showing me that the way forward is thru understanding and grace
Wow take my hat off to you John and Heather for having the love ,courage and compassion to learn and live with what you's are going through . Hi Heather hope you having lovely day Cheers Jenny 🐢💖
We're all rooting for your family and our sending our heart felt wishes your way. I really appreciate all that you share, I'm in my early 70's and my husband is 4 years older and both of us have members who died from dementia. When we remodeled our house 7 years ago we added a care giver apartment just as insurance so we could stay home till the end of life should we have a debilitating illness. If I'm ever in your situation I hope to have the kindness, patience and compassion you do.
You have a heart of gold. I wish you solace and a peaceful mind.
What an amazing husband. Thanks to him, she still has a good quality of life considering the situation.
so my better half works with the elderly, mostly dementia related, here in mtl. she's been doing it since before we met 12 years ago. i hear the stories but most, if not all, have a missing link. the question i always wanted an answer to was, " how this must affect those closest to the person suffering with this illness. i thank you for shedding light on this topic and clearing up a few things for me. i have only seen 2 of your videos so far but have subscribed. you seem very much like someone i would love to have as a friend. Heather is lucky to have you. most of the stories I've heard from my wife do not include someone like you. its truly unfortunate that you have something to be very proud of that is probably the last thing anyone would want to be proud of. that is, of course, taking care of a loved one, as you seem to be doing, under very difficult circumstances. i will keep watching because i believe that your story is equally, if not more, important than Heather's. you're right, you're not alone. this guy in mtl, that is so far, only indirectly touched by this horrible illness is watching you and is thinking of you.
This must be incredibly difficult for you . And yet your videos are humorous at times and kind. Any one of us in our late 60's early 70's could be in this position at one time. By sharing your story your helping some of us prepare for and understand dementia more. Cheers from Northern Canada.
Excellent perspective on Heather and your journey. You mentioned you were going to edit the video. The video, as is, is very informative and gives a timeline. Amazing how quickly Heather has declined. I applaud you for your courage to Keep It Simple. Sounds easy but it’s not.
This was a good video. I’m sorry that this is happening to Heather and to you. You are doing a wonderful job caring for her.