New poster
Hello,
I'm new here just looking for some advice and support as I work my way through this. My DH was diagnosed with MCI and ALZ about a year ago. He was actually the one who knew "something was wrong" for a year or two prior to that, struggling with mentally complicated tasks like bill paying and was the executor for his mother's estate (which I had to take over quietly in the background as it dragged out for two years).
Compared to some other stories on here, I guess I have it kind of easy. I'm doing all the cooking now and took over all the money duties. He will occasionally cook simple things (scrambled eggs) and he does the laundry still, but pretty much all the other tasks I am doing now.
We're a gay male couple, he's 20 years older than I am (May Dec romance I guess), so that makes it harder in a conservative part of the country. Since I'm younger, I'm still working in the prime of my career so even though I WFH, he spends his days watching TV or listening to podcasts (though he's always falling into naps). I try to engage him during the evening as much as possible though I'm busy cooking usually.
We just moved back to the city where my parents and siblings are, so I'm getting some help from them sharing meals, and he can see his nieces and nephews, so that's nice.
We got the recent new updated Covid vaccine (Moderna) and during the 24-36 hours of side effects, I was greatly surprised by how much it seemed like his AZ suddenly jumped like 5-10 years in the future. For about a day, he was completely and utterly out of it, I had to help him out of bed and to the toilet, and at one point we were outside and he asked me "what's happening?" because he had no concept of where we were. All his independence he has left had evaporated suddenly, it was shocking. As the fever and side effects subsided, within a day he was back to where he was before, almost a "oh you're back!" kind of reaction. Very strange experience, but it gave me a glimpse of what I'm in for one day I guess. (The doctor said fever can greatly influence confusion, I guess that's what happened).
I've been so busy doing all the things to run the house and my career that I haven't had too much time to be depressed, although it hits me from time to time. I've got my own anxiety issues and he was always my rock, and that's slowly going away, I have to be careful to keep my anxiety at bay or hidden. I had a panic attack a couple of weeks ago and it agitated him so much he was just shaking in tremors, and I had to calm down so that he would calm down. He used to be the one who would help me and he can't be my rock anymore, and that's what makes me feel alone the most.
Comments
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Welcome ktwbc. You have learned something very important early, and that is that fever or any any bodily change, such as a silent urinary tract infection, can cause a sudden and major downside in cognition and overall functioning. Be on the lookout for something like this whenever there is a change. Also, any kind of stressful situation can impair cognition, as you have seen.
You already know quite a lot, since you have already learned to take over difficult tasks and about avoiding stress. Read a lot of threads and post questions, to help you be more prepared for the future.
Iris
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Welcome to the forum. My partner is 15 years my senior so I understand that dynamic and always knew that caring for her might lie jn my future (not married but together for29 years). Legal questions come up early- do you have powers of attorney for finances and healthcare? I also worked from home and was able to care for my partner until she was well into stage 4-5 of her illness. You should plan now for how you might proceed when it is no longer safe to leave him alone, be it researching the memory care facilities near you or thinking about how you might bring in an aide at home. You've come to a very good place for practical and emotional support.
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Welcome aboard, but wish you didn't need to be here. But this is a great forum, and you'll get a lot of help and understanding here. You really need to see a CELA (certified elder law attorney) early as possible now. After you see one, you will feel relief, knowing that things can be taken care of.
Read a lot of posts, and get educated as much as possible on this disease. If you have specific problems or questions, ask about them here. Just about any subject is fine. You will get answers and links to other sites that will benefit you.
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Legal: yes we did wills, power of attorney’s financial and medical and life treatment paperwork all a couple of years ago.
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Welcome. This forum is great - it totally saved me when we first started this journey (actually, it is still a lifeline).
I wanted to add on about the CELA. They also can serve as your expert on your state's longterm care Medicaid process. Each state is different and I was truly shocked by the services available to us regardless of financial need. Our CELA has helped me submit the application, compile all documentation, and properly structure our assets so that I will still have them when I'm ready to retire in 15 or so years.
All the best to you and your husband. I'm sorry you need it, but I'm glad you found us.
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Hi and welcome. I am sorry for your reason to be here but happy you found this place.
One of the cruelest aspects of this disease is the loss of the very person to whom you would most likely turn for support and validation when in a challenging situation.
One of the hardest parts of dementia caregiving with my dad initially was maintaining a facade of composure when I wasn't feeling it. Emotional intelligence remains long after cognition and memory are severely compromised which means your PWD will be able to accurately read and react to your moods. This helped me.
Understanding the Dementia Experience (smashwords.com)
HB
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Welcome to the forum and I am so sorry you have to be here. Read "the 36 Hour Day" and view Tepa Snow on YouTube. I strongly urge you to get counseling and medication for your anxiety. This disease will test your limits for anxiety and depression. Slowly, you will learn that you need to be strong, you need to take charge and that you can get through this. You will learn how to do things you didn't think you could. You will grow and you will be strong. Just take one day at a time and sometimes one hour at a time. Please keep in touch.
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ktwbc - welcome to the best place for info and support. So sorry about your DH's diagnosis. Definitely read the book "The 36 Hour Day" it helped me so much understand the terrible disease and how to help my DH who was diagnosed 2 years ago. He is now in Stage 5 going into Stage 6. It helped me communicate with him, understand the behaviors and tips on how to get him to do things like shower. As others have mentioned, think of next steps as the disease progresses. You will need help. Aide, respite care, day care, or MC facility. I'm not sure that my DH will get the new COVID shot. Talking to his doctors about risks vs benefits. Here's a handout someone posted here that helped me understand the disease. I now keep track of my DH's behaviors and take the list to his doctors appointments. They don't see him long enough to understand what stage he's in.
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@SDianeL did you forget to post a link? Might this be it? https://www.smashwords.com/extreader/read/210580/1/understanding-the-dementia-experience#hlangandcommun
Or this one? https://tala.org/wp-content/uploads/2019/04/Tam-Cummings-LLC-Handouts.pdf
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Hi…welcome…I can relate..my husband is 14 years older than me…I knew I might be a caregiver but never imagined it would be for Alzheimer’s..I can’t add much as the above comments seen to have it covered..I just wanted to say educating yourself will be most helpful as is reaching out to those in the same situation ….we are all here to help and we care! Blessings.
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thanks Ed, yes I forgot. Been a hectic week! Both are good but I found the Tam Cummings one to be more helpful for me since my DH has a rare diagnosis of Alzheimer's-Posterior Cortical Atrophy. https://tala.org/wp-content/uploads/2019/04/Tam-Cummings-LLC-Handouts.pdf
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hi, I’m new here. Just reading all of these posts has already done wonders for me. ktwbc: it truly is difficult ‘losing’ the person that has been your rock, esp when you suffer from anxiety. I can empathize. I can’t offer much more than what has been said. My DH is in the early stages. The disease, Alz, is progressing so quickly. Sadness can overwhelm me. I do have a therapist, who always says, “take care of you, so you can take care of him”. So please do so for yourself. Stay in touch.
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I feel your pain I’m in beginning stage with DW. Sad to see then fade away
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I am in a similar position. I am 48, DH is 58. I knew I might someday have to be a caregiver, but I thought I had plenty of time before that happened. I so identify with everything you said. His family doesn't help at all (not even phone calls for emotional support), and my family is helping as much as they can (and I will allow). We have 2 children - 21 and 18. I am so overwhelmed with working full-time, handling the finances, dealing with my own depression/anxiety. It is a lot.
I have the 36 Hour Day, but I just can't make myself read it yet. I am not there...But I am there.
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Read it great book.
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Charley0419 My therapist also says take care of you so you can take care of him. It’s important, I do try. Yet daily there are so many things going on. Today I became extremely frustrated. My husband and I were working on the same thing-cancelling a free trial of a sports channel. He tries to do many things himself which I know is good. But he has to keep interrupting me, same questions over and over. I know. I get it. But I’m trying to do it, when I ask him something, he can’t be interrupted. I get that too.
so many changes. After 32 years of easy, happy, caring for each other time, now he seems so distant. I talk, no response. I’m busy doing more around the house, he goes to his brothers’ to watch golf. My DH is so much better when others are around- they must think I’m exaggerating. Does anyone else see this happen?
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You don’t need to read the 36 Hour day cover to cover like a novel. Use it like a reference book- read a chapter if interest or use the index in the back to look up things.
==My DH is so much better when others are around- they must think I’m exaggerating. Does anyone else see this happen?==
This is what is called showtiming. They can pull it together and put on an act for short periods of time. You will see it done in front of friends and often at the doctor’s office. Which makes it hard to get the doctor to see the full picture
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Cathy Coconus, Re: "My DH is so much better when others are around-they must think I'm exaggerating". It happens to me all the time. I tell my family how my husband is acting and then as soon as they come over he returns to his normal self. They leave and he's back to his dementia self. I'm glad for the "normal" periods but still have trouble understanding it. When we are alone it is impossible to redirect him so how does he change his behavior around others? Except, over this summer when our son and family visit for a weekend he can't keep it up the whole visit. The question I guess that has no answer.
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My wife was diagnosed 2 yr ago was told recently no driving. She has anosognosia for sure now. My DW very good at hiding this illness. In one year has never mentioned illness to anyone not even our two daughters. Today I have to tell her we have a neurologist appointment, hates going last time wouldnt go.but thanks to this group I’m telling her when she gets up
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Thanks I had never heard that term, showtiming, but it certainly fits
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It certainly is difficult to understand this whole thing…
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Hello ktwbc and a very warm welcome to you. There is much support here both practical and emotional; this place kept my head above water when going through difficult times.
You have done so much to prepare and safeguard the future for yourself and your husband; that is to your advantage.
Let us know how you are doing and ask any questions you wish, we are all on or have been on similar paths. The experiential wisdom from those farther along the experience is priceless.
We look forward to getting to know you better.
J.
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Please explain what "DH" stands for.
JML
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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Dear Husband.
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> @"Quilting brings calm" said:
> You don’t need to read the 36 Hour day cover to cover like a novel. Use it like a reference book- read a chapter if interest or use the index in the back to look up things.
> ==My DH is so much better when others are around- they must think I’m exaggerating. Does anyone else see this happen?==
> This is what is called showtiming. They can pull it together and put on an act for short periods of time. You will see it done in front of friends and often at the doctor’s office. Which makes it hard to get the doctor to see the full picture
> @"Quilting brings calm" said:
> You don’t need to read the 36 Hour day cover to cover like a novel. Use it like a reference book- read a chapter if interest or use the index in the back to look up things.
> ==My DH is so much better when others are around- they must think I’m exaggerating. Does anyone else see this happen?==
> This is what is called showtiming. They can pull it together and put on an act for short periods of time. You will see it done in front of friends and often at the doctor’s office. Which makes it hard to get the doctor to see the full picture
> @"Cathy coconis" said:
> Thanks I had never heard that term, showtiming, but it certainly fits0 -
Showtiming is working well for my DH. He uses all the tricks: a notebook for things he wants to remember, a GPA for finding his way.
When we are dining with other retirement center (where we live) residents, I try to help him find the word or other information he is looking for...so that he can finish his story. We are a good team (usually).
There are times when my mood is aggitated and my DH picks up on that instantly. Even though the cause of my irritation is not him, he becomes less cooperative and angry with me. This is a lesson I will need to learn again and again and again.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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