Help Sue in the fight against Alzheimer's. Click the link below to donate. Sue is participating in the Alzheimer's Association Walk to End Alzheimer's® to raise funds and awareness for Alzheimer's care, support and research. Will you support her efforts by making a donation on her fundraising page? act.alz.org/site/TR?fr_id=16392&pg=personal&px=19421536 _______ If you'd like to sign up for our free training, click the link below. www.careblazers.com/a/43407/pz3crJvi
Our pickleball friends sat and visited with my husband while I was on the court. They all knew him because he used to play pickleball. When he needed to go to the restroom, they would go with him to be sure he didn't get lost. Sometimes he would get up and wander off, but someone would get up and go for a walk with him. Because my community knew of my husband's illness, they were caring and supportive. Whether it was the grocery store, the bank, church, and neighborhood friends they were gracious and helpful. Surround yourself with your community because many will step up and help. Trust your community; they will probably surprise you.
Wow, what an amazing story! Because i cared for my husband, 17 years older than me, and i just lost him two weeks ago, from an unrelated issue. These last years were the best most fulfilling years of my life and i completely fell apart for the first week. Now i am accepting this but i miss him and he was a wonderful companion. I viewed our days as each day will be a good day and they were all good days!
Good evening thank you so much for this video it's great I am taking care of my husband and my elder sister both of them have vascular dementia undiagnosed Louis body dementia the doctor does not want to diagnose but it is so relevant now they in advanced stage of the vascular I would love to be able to be a cable blazer this just not enough time in my day for it on and off I have the opportunity to see a little video or something from Dr Natalie what is the best of time there's no chance my husband is like a mantra shrimp on steroids in his behaviour and my sister the tornado in waiting she's quiet most of the time until she starts to get restless she has no sense of that she's eaten or not I finally learnt after years of taking care of her to give her a good dementia by a bath but I struggle to find carers methods as they think I'm just crazy I don't care what I have to do as long as I keep my people happy my husband has had his left leg amputated below the knee in February so he is not able to walk and we have to pick him up from the bed to the chair to the bath to the toilet etc so it's very physical unfortunately my health took a banging this year I had two heart attacks and I had two heart procedures and I only had one day off in hospital and came straight back to work needless to say people think I'm just pretending to be ill😂 as I'm still doing the heavy physical work in every aspect I find it difficult to step away from them as I've seen the lack of care they receive if I'm not there they don't know me at the best of times but they are very much aware when I'm not around for them to see I will try to get in touch with Dr Natalie you are so fabulous and Sue you are amazing how much further down the road from where you are so it was like a trip down memory lane listening to you thank you your videos help Dr Natalie
I forgot to mention my name is Rashida 57 and I'm in Brixton Johannesburg South Africa. My husband is 82 and my sister is 76 when you ask her age she is 12 or 17
I want to encourage you to pursue speech therapy for your husband. It’s not a cure but we want to keep trying to stimulate speech and maybe slow the loss. I love how she interacts with him and it inspires me. She takes the time to get the best out of him.
Thank you for these stories because it shows that we're not alone. My mom and I cared for my dad for two years while he suffered through FTD and as difficult as that times was, I cherish those days because it brought my dad and I closer together. My mom and I had a lot of sleepless nights caring for him but I don't know what it was, but it felt as if the good Lord gave us the energy to do it and when he passed away July 2022 and right after he was buried all that fatigue caught up to us and it took time to get back to "normal." That being said, there is not one day that goes by since he passed away that I don't wish that I could have just one more day of caring for him.
So true: hiding that your loved one has Alzheimer's isn't doing anyone any favors. Sharing helps advocate for them, and helps the caregiver as well. It's a disability and not something to be ashamed about.
My Husband has Early Onset Alzheimer's Dementia he is 14 Years Older than me i can Relate to this Wonderful Woman Yes its Tough You have To stay in the Solution rather than the Problem God Bless All Patients and Caregivers
thank you for your candor .... I do good & I fall apart .... finding help & support has been a real challenge ... I've never been a parent and became a wife for the first time 5 years ago .... have been a caregiver most of my life ..... I married him because we both knew he wanted & needed help .... I have never had so much responsibility in my life ... at 67, this is very challenging .... sigh ... one day at a time ... mahalo nui / Thank you very much
This sounds about a step or two from where I'm at, Dr. Edmonds. My husband was diagnosed with vascular dementia about a year or so ago after I noticed his behavior changing. Test were done. A CT Scan confirmed he has been having mini-strokes which effects blood flow to his brain. If it were not for the Grace of God to strengthen and sustain me during this time, I could never do this!! This is HARD!! My Pastor has been incredibly helpful with our monthly meeting. With prayer, guidance and the Love of Christ, I am sustained. Dr. Natalie's videos have been a source of education and comfort to me. I am still working full time from home, while being a full-time caregiver to my husband, so some days I am exhausted. However, I have learned to make time for myself. That is so important, don't neglect this!! Ever!!!! 😊
Thanks, Sue for sharing your story. Your positive attitude is an inspiration. I cared for both my mother and father who suffered from dementia. I used the business card with information letting others know they had dementia when we went out to restaurants, traveled, etc. I could discretely hand the card to a server, ticket agent, shuttle driver, etc so they knew to direct their questions to me and not to them. This was one of the best tips I got from this TH-cam channel. Dementia Careblazers is such a positive place to come when I feel overwhelmed.
I enjoyed this interview. Sue is a great communicator, both practical and honest about this enormous task. In my case I care for my mother with dementia. As a Christian I may add that it helps me a lot to share my situation with other Christians, many of whom are or have been in a similar situation. In addition to all the practical advice, empathy and support in prayer help me remain strong and hopeful.
Thank you. This has confirmed I really need to find a group for more stimulation for mum and support for me. In britain we have care cafes but getting a referral can be quite waring. Maybe I shall try again today and I will be lucky to get the right person to talk to. That's if I dont get the "sorry all our lines are busy message" or the having to request on line!
Dr Natalie you have been so helpful . I’m glad I found you my husband is 8 years since diagnosis and would appear to be in the same time line as your visitor today .. I’m trying my best to live as normal as possible . I’m primary caregiver we’ve been together since 17 years old , we’re both 83 I just keep saying we’re fine and managing … my family help and in a few weeks my two grandsons are going with us to Spain for a short holiday . I am so lucky . It’s not easy but you have to try and lead as normal a life as possible as she just said one day at a time xxx
Wow!! I so needed to hear this today. Appreciate you sharing your path, sending blessings for each day ahead. My LO wasn't misdiagnosed in 2018, then diagnosed in 2019 with PD, then upgraded to Lewy Body Dementia 2 wks ago. It's been a long 5 yrs 💔 of decline.
Dr. Natalie and Sue, Thank you for posting this journey of Sue’s. My heart is touched and it inspired me to reach out… My husband was diagnosed by his PCP last fall and there are days my frustration builds, but most days are relatively calm. After a recent visit to hubby’s dermatologist I learned a valuable lesson related to Sue’s video post. Hubby brought up out of the blue that his drivers license was revoked and the dermatologist immediately started in on “well why would they do that, you are in good health”!!!!!ARGH! I was finally able to quietly tell him of his diagnosis and my hubby heard me and said “ I was??” Ugh, denial. So all of that back story to say I’d like to know more about those little cards Sue 2:31 takes with her to hand out for just such occasions. Please let me know how to access or what to say if I have to make my own! Gratefully, Lynda
This was so relevant to me. I found Sue’s story so similar to mine. I try to play golf and keep up routines and am lucky enough to have a carer and a day activity program for my husband so that I can continue having “my time”. Through the FB group I did meet a kindred soul in Australia (In a different state to where I live) we msg regularly and she is such a great support. I am a Care Course member and have found this course so good. Dr Natali thank you for all the information and stories you share. 🙏🏼
Thank you so much for sharing, Sue and Dr Natali. My mum and I, caring for my dad here in Australia can relate to much to Sue's story. Sending you all love and support ❤
The most difficult thing I'm dealing with currently is that our home/property desperately needs up keep and expensive repairs. I'm told that we need to sell. Moving him sounds drastic, and he has asked me why I want to "sell off the place." I don't want to but am seriously concerned. There are major things needing attention, like our vehicle at this moment. The HVAC system had to be replaced a month ago at a major expense. Our children are hours away from us, so even talking to them for support is difficult. Sue seems like a very practical person and realizes that every day changes have to be met without stressing out.
There is often a lot of stress involved! But I do what I can - what’s within my power and budget to do. Not stress free but getting through the stress as best as I can. Take care.
Thank you Sue and Dr Natali. This video is so helpful/encouraging. We are in the very early stages of the adventure as we haven’t visits scheduled but do not have an ‘official’ diagnosis yet. Initially, we are looking at mild cognitive impairment. Per our PCP, dr visits, MRI, etc may determine the cause and then a treatment plan. Failed to mention…I am caring for my sweet husband. 💕
Thank you for this video with Sue sharing. Sue, the points you shared regarding you/we have a choice to stay calm and how to respond (or not respond ) but instead listen kindly and respectfully means so much. The love you show by your commitment to your husband and taking care of yourself at the same time resonates. Oh my, when Dr. Natali asked the question about a support group, that hits home as it’s hard enough seeing your loved one going through cognitive decline nevertheless hearing what may be down the road from someone in a support group. You said “take it a day at a time” and even just let some things go that aren’t relevant to your situation while attending a group that is helpful. It sounds like there is value in attending for support and I love that over time someone who’s been in a group for awhile can be helpful to others with what they have already been through and maybe learned. My sisters and I have learned so much from Dr Natalia’s videos ( our Mother has dementia it’s heartbreaking ). The knowledge and insights truly make a difference. I didn’t even think about joining a Careblazer live group as my fear of hearing hard things would be so hard on my heart but after listening to Sue I may rethink the potential of participating ( or at least quietly joining from time to time). Dr. Natali I have paid for the lifetime membership. Is that where I learn about when you have upcoming Careblazer support groups or is it somewhere else? Also, I had never heard of a directory as a way of making a connection with a trusted Careblazer. Would you mind sharing any information on those last questions when you have the opportunity? Even messaging is fine or I believe you have my email? Whatever you feel is best. Thank you from the bottom of my heart for all your efforts sharing within this community. It’s been a lifesaver with various situations with Mom and in discussions with family. There are no other professional and caring support groups like this one with the Careblazer caring mission, the integrity and the professionalism always presented. You are amazing and such a blessing! Thank you! ❤
Thank you so much, Natali and Sue! I needed this today and it’s a great reminder to reach out for support and to look at what we can control - our thinking about what happens.
This is a very helpful story thank you. Sounds like lovely support groups you have. Hard to find in the UK. Love the self care tips too. Meditation, therapist etc. ❤. Much love.
I am in the same boat. It's been 5 yrs since my mom's diagnosis. It is just me and my mom. Not sure if this is available to you, but what has helped me the most has been adult day services. She is in her third year in daycare. The second thing that has helped has been relying on MY judgment. For example, give your mom a choice of two outfits , not the whole closet. For my mom, I reduced the coat closet to just one coat. The one she needed for the season. This led to less stress for both of us.
My mom and I cared for my dad who had frontal lobe dementia. He passed away July 2022 after a two year battle with it. It's definitely not easy, but you will find the strength to do it...the first year with my dad was the toughest, there were days where he was good but then there were the days where he was aggressive and lashed out both physically and verbally and the stress of not knowing what he could do from hour to hour was not easy to deal with but we found the strength to get through the tough parts and so will you. Never forget there are people that are going through what you are but also never forget your loved one with the dementia is suffering even more.
Reach out to your local county elder services or human services. I was alone in a different state with my mom and her obvious dementia. I walked into the situation thinking I’d take her home. I couldn’t. My home wouldn’t meet her needs. So I stayed. I finally found caregiver support through the local county. I have home care that comes in four times a week. The county pays for that service and it is a godsend. They clean the house and watch Mom giving me free time for those hours. I’ve found a local counselor who helped me through a caregiver course that gave me coping skills. I now meet with her once a month and she is on call if I need her. After over a year, things are better. It has taken time, but it happened. You are not alone. ❤.
My frustration is everytime there is a new solution in place for my LO, a new problem almost immediately shows up. And while I accept that life is meant to have problems, the. “Timeliness” of the new problem leads me to wonder if they (or the universe) is punishing me on purpose…like purposely creating increased dependency on me regardless of what solutions are in place. This video helped me a lot to reframe my resentment by reframing my view of the situation. Perhaps it really is just a coincidence that they got worse when help was rendered. Perhaps it is just a progression. And perhaps it is even a sign of good timing that help was received just in time before things got a little worse, rather than things getting worse once help is rendered.
Sue’s story similar to mine, and similar thing me finding you and this chat room. He is getting very close to losing all ability to walk. Trying to figure out how I will handle what’s next.
I just listened to this and heard where you said something about 'how do you let DMV know to take his license away? I need advice with this. My brother-in-law and sister who live next door ... he is in the early stages of dementia (she is on oxygen 24/7 ...so I'm needing to step more into the picture with them. I already took him to get his license renewed last month, where he didn't pass the test and they gave him a 60 day extention to retake the test. I know he won't be able to pass it, and am feeling to let this play itself out ... as he has realized his driving days might be coming to an end... but I sat there at the DMV really not knowing how to handle this. Please share the answer to that question :) I'd greatly appreciate it. Claudia
In California, the neurologist who gave him the Alzheimer's diagnosis said he was obligated by law to report the diagnosis to the DMV. We soon received a letter from the DMV stating that his license had been revoked. I did not read the entire letter to him where it said that he could take the tests. He alos has very poor eyesight so he needed to stop driving on several levels. When his desire to drive became an issue, I could blame the dr.
I think one of the main differences with dementia is the progressive nature of the disease. I rarely saw this in the people with disabilities with whom I worked. It is also different when the person is a family member. So while there is some overlap, there are definitely some differences. Most of what I’ve learned about caregiving has been through Careblazers.
❓my mother's Alzheimer's is picking up speed going downhill rapidly. A week ago she was admitted to the hospital; she almost had a stroke and was diagnosed with afib and low blood pressure. She also has COPD. She lives alone, I am the only child, she has an LTC policy and is next on the list to be admitted to a super nice assisted living home. She doesn't think she's ready to go to assisted living, but she won't be invited again for possibly years if she doesn't go soon. How do I convince her now is the right time?
How can you forgive yourself (me) after putting your mom in a nursing home? it haunted me every day. She stayed there for 4 months, and I removed her after but she lasted 2-3 weeks and she passed. I think she was mistreated at the nursing home. This is the first time I talked about this. I cannot forgive myself and I am in such a pain. I took too long before removing her. It has been almost 3 years. I deserve all the pain. used to take care of her, I tried but then It was so hard. I should have left my job to take care of her instead of putting her there but I choose to put her at the nursing home. I have wished every day for another chance to care for her. I know I don't deserve forgiveness. Sorry just wanted to talk
You made the best decision you could at the time. No one can see the future. Please forgive yourself and try to move forward as I imagine she would want. Be well.
I believe you did really well. You knew your limits, you knew that quitting your job to be caretaker would create a whole new, different set of problems. You felt that the care of professionals would be best for her, and would honor the fact that you’re not a professional. You suspected after awhile that they might not treat her well there, but you figured she would still get the best care there, and you’d continue earning a living. And eventually you did take her back home. I feel that you did an honorable job of doing close to your very best.
Regarding your feeling that you deserve punishment and not forgiveness: Incan certainly understand feeling that way about yourself. However, imagine that a child misbehaved. You might give them a punishment that day. Would you punish them again the next day? Would you continue daily punishment for weeks, months, years for that child? Consider deciding that you’ve had enough punishment and are ready to step into the self forgiveness phase. It’s a miserably hard situation you’ve been in, and you did a very acceptable job of giving and getting care for her. Maybe a new phase of forgiveness can begin now.
Help Sue in the fight against Alzheimer's. Click the link below to donate.
Sue is participating in the Alzheimer's Association Walk to End Alzheimer's® to raise funds and awareness for Alzheimer's care, support and research. Will you support her efforts by making a donation on her fundraising page?
act.alz.org/site/TR?fr_id=16392&pg=personal&px=19421536
_______
If you'd like to sign up for our free training, click the link below.
www.careblazers.com/a/43407/pz3crJvi
Our pickleball friends sat and visited with my husband while I was on the court. They all knew him because he used to play pickleball. When he needed to go to the restroom, they would go with him to be sure he didn't get lost. Sometimes he would get up and wander off, but someone would get up and go for a walk with him. Because my community knew of my husband's illness, they were caring and supportive. Whether it was the grocery store, the bank, church, and neighborhood friends they were gracious and helpful. Surround yourself with your community because many will step up and help. Trust your community; they will probably surprise you.
Wow, what an amazing story! Because i cared for my husband, 17 years older than me, and i just lost him two weeks ago, from an unrelated issue. These last years were the best most fulfilling years of my life and i completely fell apart for the first week. Now i am accepting this but i miss him and he was a wonderful companion. I viewed our days as each day will be a good day and they were all good days!
Thanks for sharing. So sorry for your loss. 💖
Good evening thank you so much for this video it's great I am taking care of my husband and my elder sister both of them have vascular dementia undiagnosed Louis body dementia the doctor does not want to diagnose but it is so relevant now they in advanced stage of the vascular I would love to be able to be a cable blazer this just not enough time in my day for it on and off I have the opportunity to see a little video or something from Dr Natalie what is the best of time there's no chance my husband is like a mantra shrimp on steroids in his behaviour and my sister the tornado in waiting she's quiet most of the time until she starts to get restless she has no sense of that she's eaten or not I finally learnt after years of taking care of her to give her a good dementia by a bath but I struggle to find carers methods as they think I'm just crazy I don't care what I have to do as long as I keep my people happy my husband has had his left leg amputated below the knee in February so he is not able to walk and we have to pick him up from the bed to the chair to the bath to the toilet etc so it's very physical unfortunately my health took a banging this year I had two heart attacks and I had two heart procedures and I only had one day off in hospital and came straight back to work needless to say people think I'm just pretending to be ill😂 as I'm still doing the heavy physical work in every aspect I find it difficult to step away from them as I've seen the lack of care they receive if I'm not there they don't know me at the best of times but they are very much aware when I'm not around for them to see I will try to get in touch with Dr Natalie you are so fabulous and Sue you are amazing how much further down the road from where you are so it was like a trip down memory lane listening to you thank you your videos help Dr Natalie
I forgot to mention my name is Rashida 57 and I'm in Brixton Johannesburg South Africa.
My husband is 82 and my sister is 76 when you ask her age she is 12 or 17
Sorry for your loss. I do hope your memories will soon put a smile on your face and love in your heart. Greetings and a huge hug from the UK.
I want to encourage you to pursue speech therapy for your husband. It’s not a cure but we want to keep trying to stimulate speech and maybe slow the loss. I love how she interacts with him and it inspires me.
She takes the time to get
the best out of him.
Thank you for these stories because it shows that we're not alone. My mom and I cared for my dad for two years while he suffered through FTD and as difficult as that times was, I cherish those days because it brought my dad and I closer together. My mom and I had a lot of sleepless nights caring for him but I don't know what it was, but it felt as if the good Lord gave us the energy to do it and when he passed away July 2022 and right after he was buried all that fatigue caught up to us and it took time to get back to "normal." That being said, there is not one day that goes by since he passed away that I don't wish that I could have just one more day of caring for him.
Thanks for sharing, sending you love 💖
So true: hiding that your loved one has Alzheimer's isn't doing anyone any favors. Sharing helps advocate for them, and helps the caregiver as well. It's a disability and not something to be ashamed about.
My Husband has Early Onset Alzheimer's Dementia he is 14 Years Older than me i can Relate to this Wonderful Woman Yes its Tough You have To stay in the Solution rather than the Problem God Bless All Patients and Caregivers
thank you for your candor .... I do good & I fall apart .... finding help & support has been a real challenge ... I've never been a parent and became a wife for the first time 5 years ago .... have been a caregiver most of my life ..... I married him because we both knew he wanted & needed help .... I have never had so much responsibility in my life ... at 67, this is very challenging .... sigh ... one day at a time ... mahalo nui / Thank you very much
❤❤❤
Sending love and strength, Janet. If you'd like to learn more about the virtual support we offer send us an email to support@careblazers.com
Her approach sounds so much like mine, and we were very successful and i could keep us both happy almost always.
This sounds about a step or two from where I'm at, Dr. Edmonds. My husband was diagnosed with vascular dementia about a year or so ago after I noticed his behavior changing. Test were done. A CT Scan confirmed he has been having mini-strokes which effects blood flow to his brain.
If it were not for the Grace of God to strengthen and sustain me during this time, I could never do this!! This is HARD!! My Pastor has been incredibly helpful with our monthly meeting. With prayer, guidance and the Love of Christ, I am sustained. Dr. Natalie's videos have been a source of education and comfort to me.
I am still working full time from home, while being a full-time caregiver to my husband, so some days I am exhausted. However, I have learned to make time for myself. That is so important, don't neglect this!! Ever!!!! 😊
Thanks, Sue for sharing your story. Your positive attitude is an inspiration. I cared for both my mother and father who suffered from dementia. I used the business card with information letting others know they had dementia when we went out to restaurants, traveled, etc. I could discretely hand the card to a server, ticket agent, shuttle driver, etc so they knew to direct their questions to me and not to them. This was one of the best tips I got from this TH-cam channel. Dementia Careblazers is such a positive place to come when I feel overwhelmed.
I enjoyed this interview. Sue is a great communicator, both practical and honest about this enormous task. In my case I care for my mother with dementia. As a Christian I may add that it helps me a lot to share my situation with other Christians, many of whom are or have been in a similar situation. In addition to all the practical advice, empathy and support in prayer help me remain strong and hopeful.
I agree 1 Peter 1:6-7
Thank you. This has confirmed I really need to find a group for more stimulation for mum and support for me. In britain we have care cafes but getting a referral can be quite waring. Maybe I shall try again today and I will be lucky to get the right person to talk to. That's if I dont get the "sorry all our lines are busy message" or the having to request on line!
Thanks Sue, your are inspiring.
I do the best I can and am not perfect by any means. I'm glad you found this helpful.
Thank you for sharing all of this in such an honest and real way.
I find these interviews super helpful. Thank you, Sue, for sharing your insights
Dr Natalie you have been so helpful . I’m glad I found you my husband is 8 years since diagnosis and would appear to be in the same time line as your visitor today .. I’m trying my best to live as normal as possible . I’m primary caregiver we’ve been together since 17 years old , we’re both 83 I just keep saying we’re fine and managing … my family help and in a few weeks my two grandsons are going with us to Spain for a short holiday . I am so lucky . It’s not easy but you have to try and lead as normal a life as possible as she just said one day at a time xxx
Thanks for sharing. Have a great time on your trip to Spain 💖
Wow!! I so needed to hear this today. Appreciate you sharing your path, sending blessings for each day ahead. My LO wasn't misdiagnosed in 2018, then diagnosed in 2019 with PD, then upgraded to Lewy Body Dementia 2 wks ago. It's been a long 5 yrs 💔 of decline.
Sending love and strength 💖
Same here
Dr. Natalie and Sue,
Thank you for posting this journey of Sue’s. My heart is touched and it inspired me to reach out…
My husband was diagnosed by his PCP last fall and there are days my frustration builds, but most days are relatively calm. After a recent visit to hubby’s dermatologist I learned a valuable lesson related to Sue’s video post. Hubby brought up out of the blue that his drivers license was revoked and the dermatologist immediately started in on “well why would they do that, you are in good health”!!!!!ARGH! I was finally able to quietly tell him of his diagnosis and my hubby heard me and said “ I was??” Ugh, denial. So all of that back story to say I’d like to know more about those little cards Sue 2:31 takes with her to hand out for just such occasions. Please let me know how to access or what to say if I have to make my own! Gratefully, Lynda
Addition: Do I need to be a Careblazer to access the card?
Hi Lynda, we just responded to your email with more information💖@@lynda2250
This was so relevant to me. I found Sue’s story so similar to mine. I try to play golf and keep up routines and am lucky enough to have a carer and a day activity program for my husband so that I can continue having “my time”. Through the FB group I did meet a kindred soul in Australia (In a different state to where I live) we msg regularly and she is such a great support. I am a Care Course member and have found this course so good. Dr Natali thank you for all the information and stories you share. 🙏🏼
Thank you so much for sharing, Sue and Dr Natali. My mum and I, caring for my dad here in Australia can relate to much to Sue's story. Sending you all love and support ❤
The most difficult thing I'm dealing with currently is that our home/property desperately needs up keep and expensive repairs. I'm told that we need to sell. Moving him sounds drastic, and he has asked me why I want to "sell off the place." I don't want to but am seriously concerned. There are major things needing attention, like our vehicle at this moment. The HVAC system had to be replaced a month ago at a major expense. Our children are hours away from us, so even talking to them for support is difficult.
Sue seems like a very practical person and realizes that every day changes have to be met without stressing out.
There is often a lot of stress involved! But I do what I can - what’s within my power and budget to do. Not stress free but getting through the stress as best as I can. Take care.
Great interview! Love my support group! Your right about the 24/7!
Thank you Sue and Dr Natali. This video is so helpful/encouraging. We are in the very early stages of the adventure as we haven’t visits scheduled but do not have an ‘official’ diagnosis yet. Initially, we are looking at mild cognitive impairment. Per our PCP, dr visits, MRI, etc may determine the cause and then a treatment plan.
Failed to mention…I am caring for my sweet husband. 💕
Sending you so much love 💖
Thank you for this video with Sue sharing.
Sue, the points you shared regarding you/we have a choice to stay calm and how to respond (or not respond ) but instead listen kindly and respectfully means so much.
The love you show by your commitment to your husband and taking care of yourself at the same time resonates. Oh my, when Dr. Natali asked the question about a support group, that hits home as it’s hard enough seeing your loved one going through cognitive decline nevertheless hearing what may be down the road from someone in a support group. You said “take it a day at a time” and even just let some things go that aren’t relevant to your situation while attending a group that is helpful. It sounds like there is value in attending for support and I love that over time someone who’s been in a group for awhile can be helpful to others with what they have already been through and maybe learned.
My sisters and I have learned so much from Dr Natalia’s videos ( our Mother has dementia it’s heartbreaking ). The knowledge and insights truly make a difference. I didn’t even think about joining a Careblazer live group as my fear of hearing hard things would be so hard on my heart but after listening to Sue I may rethink the potential of participating ( or at least quietly joining from time to time).
Dr. Natali I have paid for the lifetime membership. Is that where I learn about when you have upcoming Careblazer support groups or is it somewhere else? Also, I had never heard of a directory as a way of making a connection with a trusted Careblazer.
Would you mind sharing any information on those last questions when you have the opportunity? Even messaging is fine or I believe you have my email? Whatever you feel is best.
Thank you from the bottom of my heart for all your efforts sharing within this community. It’s been a lifesaver with various situations with Mom and in discussions with family. There are no other professional and caring support groups like this one with the Careblazer caring mission, the integrity and the professionalism always presented. You are amazing and such a blessing! Thank you! ❤
Hi Janet. Thanks for sharing. Send us an email at support@careblazers.com so we can get you that information. 💖
Thank you. I am not "perfect" in any way but I do the best I can on most days. I'm pleased that you found it helpful.
Thank you both for sharing and educating. I so appreciate you both for guiding me thru this time.
Aphasia specialist are helpful in support and providing tools to ease the way.
i appreciate the honesty. i feel very similar. this interview so awesome.
Thank you so much!
Thank you so much, Natali and Sue! I needed this today and it’s a great reminder to reach out for support and to look at what we can control - our thinking about what happens.
I'm glad you found it helpful.
This is a very helpful story thank you. Sounds like lovely support groups you have. Hard to find in the UK. Love the self care tips too. Meditation, therapist etc. ❤. Much love.
My wife was diagnosed 2 years ago with dementia
Obviously I must be taking on too much because I'm always stressed
I went to a few caregiver group meetings and shared my story a little bit.
2nd Arrow! I am going to take this with me.
Hi Dr Natali. Have you shared your story of being your Dad’s caretaker? I would love to hear how you do it. Thanks Linda
I have no family or friends to help me with my mom and I'm so scared to do.this alone. It's been a year & Im already burning out. 🥺
I am in the same boat. It's been 5 yrs since my mom's diagnosis. It is just me and my mom. Not sure if this is available to you, but what has helped me the most has been adult day services. She is in her third year in daycare. The second thing that has helped has been relying on MY judgment. For example, give your mom a choice of two outfits , not the whole closet. For my mom, I reduced the coat closet to just one coat. The one she needed for the season. This led to less stress for both of us.
My mom and I cared for my dad who had frontal lobe dementia. He passed away July 2022 after a two year battle with it. It's definitely not easy, but you will find the strength to do it...the first year with my dad was the toughest, there were days where he was good but then there were the days where he was aggressive and lashed out both physically and verbally and the stress of not knowing what he could do from hour to hour was not easy to deal with but we found the strength to get through the tough parts and so will you. Never forget there are people that are going through what you are but also never forget your loved one with the dementia is suffering even more.
Reach out to your local county elder services or human services.
I was alone in a different state with my mom and her obvious dementia. I walked into the situation thinking I’d take her home. I couldn’t. My home wouldn’t meet her needs. So I stayed. I finally found caregiver support through the local county.
I have home care that comes in four times a week. The county pays for that service and it is a godsend. They clean the house and watch Mom giving me free time for those hours. I’ve found a local counselor who helped me through a caregiver course that gave me coping skills. I now meet with her once a month and she is on call if I need her.
After over a year, things are better. It has taken time, but it happened.
You are not alone. ❤.
My frustration is everytime there is a new solution in place for my LO, a new problem almost immediately shows up. And while I accept that life is meant to have problems, the. “Timeliness” of the new problem leads me to wonder if they (or the universe) is punishing me on purpose…like purposely creating increased dependency on me regardless of what solutions are in place. This video helped me a lot to reframe my resentment by reframing my view of the situation. Perhaps it really is just a coincidence that they got worse when help was rendered. Perhaps it is just a progression. And perhaps it is even a sign of good timing that help was received just in time before things got a little worse, rather than things getting worse once help is rendered.
Sue’s story similar to mine, and similar thing me finding you and this chat room. He is getting very close to losing all ability to walk. Trying to figure out how I will handle what’s next.
Sorry to hear this. Sending love and strength 💖
I just listened to this and heard where you said something about 'how do you let DMV know to take his license away?
I need advice with this. My brother-in-law and sister who live next door ... he is in the early stages of dementia (she is on oxygen 24/7 ...so I'm needing to step more into the picture with them. I already took him to get his license renewed last month, where he didn't pass the test and they gave him a 60 day extention to retake the test. I know he won't be able to pass it, and am feeling to let this play itself out ... as he has realized his driving days might be coming to an end... but I sat there at the DMV really not knowing how to handle this. Please share the answer to that question :) I'd greatly appreciate it. Claudia
In California, the neurologist who gave him the Alzheimer's diagnosis said he was obligated by law to report the diagnosis to the DMV. We soon received a letter from the DMV stating that his license had been revoked. I did not read the entire letter to him where it said that he could take the tests. He alos has very poor eyesight so he needed to stop driving on several levels. When his desire to drive became an issue, I could blame the dr.
Was there anything that Sue had to learn different about Dementia care versus the thinking and caring for people with special needs?
I think one of the main differences with dementia is the progressive nature of the disease. I rarely saw this in the people with disabilities with whom I worked. It is also different when the person is a family member. So while there is some overlap, there are definitely some differences. Most of what I’ve learned about caregiving has been through Careblazers.
❓my mother's Alzheimer's is picking up speed going downhill rapidly. A week ago she was admitted to the hospital; she almost had a stroke and was diagnosed with afib and low blood pressure. She also has COPD.
She lives alone, I am the only child, she has an LTC policy and is next on the list to be admitted to a super nice assisted living home.
She doesn't think she's ready to go to assisted living, but she won't be invited again for possibly years if she doesn't go soon.
How do I convince her now is the right time?
Sorry to hear this. Check out a related youtube video you may find helpful. 💖
th-cam.com/video/M-yCRvqJWw0/w-d-xo.html
How can you forgive yourself (me) after putting your mom in a nursing home? it haunted me every day. She stayed there for 4 months, and I removed her after but she lasted 2-3 weeks and she passed. I think she was mistreated at the nursing home. This is the first time I talked about this. I cannot forgive myself and I am in such a pain. I took too long before removing her. It has been almost 3 years. I deserve all the pain. used to take care of her, I tried but then It was so hard. I should have left my job to take care of her instead of putting her there but I choose to put her at the nursing home. I have wished every day for another chance to care for her. I know I don't deserve forgiveness.
Sorry just wanted to talk
Hi there, Sorry to hear this. I'm sharing a youtube video below that you may find helpful. th-cam.com/video/9DAdBE_ZhZw/w-d-xo.html
You made the best decision you could at the time. No one can see the future. Please forgive yourself and try to move forward as I imagine she would want. Be well.
I believe you did really well. You knew your limits, you knew that quitting your job to be caretaker would create a whole new, different set of problems. You felt that the care of professionals would be best for her, and would honor the fact that you’re not a professional. You suspected after awhile that they might not treat her well there, but you figured she would still get the best care there, and you’d continue earning a living. And eventually you did take her back home.
I feel that you did an honorable job of doing close to your very best.
Regarding your feeling that you deserve punishment and not forgiveness: Incan certainly understand feeling that way about yourself. However, imagine that a child misbehaved. You might give them a punishment that day. Would you punish them again the next day? Would you continue daily punishment for weeks, months, years for that child? Consider deciding that you’ve had enough punishment and are ready to step into the self forgiveness phase. It’s a miserably hard situation you’ve been in, and you did a very acceptable job of giving and getting care for her. Maybe a new phase of forgiveness can begin now.
Unfortunately just when you figure things out they change
I'm reaching out
I don't know how this works
Hi James, if you'd like to learn more about our resources, you can email us at support@careblazers.com 💖
@@DementiaCareblazers Thanks so much for your help with everything 💖
hello