New here... starting to feel lost...

CydS

Hello, all my new friends :) … My husband was officially diagnosed almost two years ago, but it's been apparent to those close to him for quite a few years that there were some issues with his memory. He's 75 and I'm 62 and still working full time a job that I LOVE and the insurance at this point is invaluable since he also has CHF, ATTR-CM, and prostate cancer. We caught all of it early, and he responds to treatment well. You'd never know he was as sick as he is. We still go on miles-long hikes, he can walk up multiple flights of stairs carrying a backpack. He responded well to the low dose of Aricept but when we upped the dose, he started having serious digestive issues, so we went back down. He passed his driving test and is actually a better driver than most on the road.

I've had it all under control for a couple of years now, but feel like I'm losing ground as the Alzheimer's progresses, and it definitely is. I wonder if he'll pass his driver test this year - and I'm not looking forward to him losing that freedom.

What has me coming to this forum is I'm looking for the correct support group(s) to join. I'd like to look at ones we can do separately as well as together. We have a strong marriage, but for the past couple of years, when he gets into a funk (don't know what else to call it), he believes I don't want to be here with him. I respond emphatically that I am where I want to be and with who I want to be with. It goes back and forth, sometimes all night long. These episodes usually start late at night when we're getting ready to go to sleep. Sunday night was particularly difficult. He really believed that I have found someplace else to be. He has no memory of that part of the discussion, however. I'll be looking at what is offered here, but am looking for some guidance to help narrow down the choices.

I am also looking for therapists for my husband. I have one and he has mentioned he might want to talk to someone as well. He mentioned couples therapy, but I'm not sure that will help us at this point.

I do look forward to responses.

Warmly, CydS

Carl46

Welcome to the group, CydS. I am sorry you have found it necessary to join us.

Your local chapter of the Alzheimer's Association may have in-person support groups you can join. In addition, I have found excellent support here.

If you have not already done so, I suggest you visit a CELA to discuss powers of attorney so you can manage your financial affairs and his medical care when he is no longer able to make those decisions. If you already have powers of attorney, I suggest you amend yours so that he is no longer the person to act on your behalf. You will also need to discuss management of your finances so that he can have memory care services if it becomes necessary to place him.

"The 36-Hour Day" is a book strongly recommended as a guide to management of dementia.

My wife stopped driving after her diagnosis, because she knew from her experience in the insurance industry that she would be blamed for any collision, regardless of the circumstances. It would be best for both of you if your husband were to stop driving now and convert his driver's license to a non-driver's State ID when it expires.

Best wishes to you.

sfrsythe

the evening rants are known as Sundowners that happens to those with dementia. My husband and I are in our 60’s and making us have a mutual meeting with our psychiatrist cemented that. He put him on some medication and it has pretty much stopped. It does throw me off guard when every now and then it rears its head then we adjust meds some and we back holding steady for a little while.

I have learned so much from this group. I usually don’t talk too much but boy do I get answers and ideas to ‘survive’. I wish you the best !!!!!!!

donnabeams

I a new here and my husband was diagnosed over a year ago. I miss the way we used to talk and he can not give me person, place ir thing when he talks, it's only general connection words that don't make sense alone. I am craving male friendship. Is that normal?

Biggles

Everything is normal in this very abnormal world we are all facing. Navigating our own needs and wants as well as our partners, and then marrying them together is so very hard. There is no right or wrong way just a way to get through. I try to go the happiest way possible, find the funny side in three or four pairs of undies on, shorts back to front, toothpaste squeezed all over the vanity (and never leave the back rub near the toothpaste) making up your mind and his mind for breakfast, lunch and dinner is exhausting but I try to view it as empowering. My DH has Aphasia so talking is sadly difficult so we shower to Rod Stewart, have breakfast with the Beatles etc. I miss him every hour of every day. Good luck.

Biggles

Forgot look on this forum for ‘The Cavalry’s Not Coming’ the most empowering article to read. It gave me strength and courage to carry on. Again good luck.

harshedbuzz

@CydS

Hi and welcome. I am sorry for your reason to be here, but pleased you found this place.

You've gotten some excellent advice so far. A couple of things struck me-

Driving. This is a dicey decision. PWD are OK to drive until they aren't. And you might not recognize it's time to stop until someone's been hurt or killed. Dementia impacts reaction time and visual/spatial processing fairly early on in the disease progression. It might be time to consider a ride sharing service like Uber, Lyft Silver or GoGoGrandparent.

Have you actually spoken with your agent regarding his coverage with a dementia diagnosis in his medical record? When dad was initially diagnosed, our agent informed me that his policy would not cover him in an accident with a medical history of dementia. The other piece is that should your DH have an accident and find himself in a civil lawsuit, considerable time will pass between the accident and his deposition and court date. With a progressive disease like dementia, the man on the stand will not be the same man who was driving.

My mom (no dementia) was sued after an accident. The notification of the suit came almost a year after and the deposition a few months later. The trial was rescheduled several times and was finally scheduled 2 1/2 years after the accident. She seemed so much older and frailer than she had been at the time of the accident.

There tend to be 2 kinds of support groups. The are those for caregivers which are similar to this one— participants seek solutions to issues they're having, vent and seek support of others who get it. Before dad died, mom and I attended an IRL support group which was really well moderated and useful for local resources like day programs, dentists who "got" PWD and which MCFs were best. The other kind of group is most often called something like a Memory Cafe. These might be found as part of a hospital community programming for elders or at a CCRC IME. Sometimes the meeting is split with a short breakout that allows caregivers to vent, etc, but not always.

The behavior you are describing is very common in PWD. My dad was similar in the middle-stages of his disease. I think his belief that mom was unhappy, leaving him or cheating with someone when she ran errands came from 2 places. The first is that he was feeling anxious and vulnerable. The second was that mom's general unhappiness around the changes in dad was palpable. While this was understandable, PWD maintain their emotional intelligence well into the later stages of the disease and are able to parse not only changes in their spouse's mood but also subtle changes in the dynamic of the relationship from equal partners towards caregiver & patient. A combination of mom putting on her best game-face of sunny cheerfulness and medication for both helped a lot. Instead of a couple's therapist, I'd consider taking DH to a geriatric psychiatrist for medication to relieve the anxiety that's likely at the root of his behavior. I thought dad would bristle at "a shrink" as he called them, but he enjoyed the appointments and thought the world of the doctor.

Talk therapy for PWD isn't generally suggested. By the time a person has the diagnosis, they are unable to change with therapy. PWD have losses around empathy, learning new ways of thinking and recognizing when to apply those new tools.

HB

harshedbuzz

https://alzconnected.org/discussion/comment/251948#Comment_251948

Hi and welcome. I am sorry for your reason to be here but pleased you found this place.

One of the biggest losses for spouses of a PWD is the loss of consortium and intimacy. This isn't limited to sexual intimacy; companionship, a shared history that can be referenced without explanation; someone trusted to bounce ideas off and even inside jokes.

When mom was dad's caregiver, she very much missed male companionship and being special to a partner. If you're feeling that, too, it's your normal and OK.

HB

CydS

https://alzconnected.org/discussion/comment/251961#Comment_251961

Attitude is everything - thank you for reminding me of that.

I love your approach, and is similar to ours. We find joy most of the time. His general attitude about having Alzheimer's is pretty great, I think, and helps a great deal. He's a vocalist and is still performing and when he let's the audience know that he has Alzheimer's, and he's so happy to be performing for them, the response is always so warm. Music has kept us sane, and kept him vital. Funny thing, he asks me multiple times a day what day it is, but he not only remembers lyrics, he's learning new ones. It's incredible - you can't have so much good music in our life and not have it be incredible.

I realized about a year ago, when I was truly unhappy - about me, about him, and about our marriage - I was really worried we weren't going to make it. Then there was the guilt of abandoning a sick loved-one. I got help - meds, therapy. I can't fix him, but I can and did make the adjustments. I am happier and more committed now than ever in our marriage. In fact, I'd say this is the best we've ever been and I will look back on this time with fondness.

Timmyd

In the early and middle stages, DW was compliant, cooperative, and maintained a positive attitude. We had several really good years during those early and middle stages. We were moving forward together. Eventually ALZ progressed to a point where I there has to be eyes on DW 24x7. We are now at point where it is clear we are no longer moving forward together. We are on much different paths. I am having to carve out a new life in which DW provides no meaningful social component. There are still moments of joy and laughter, but it is different.

CydS

https://alzconnected.org/discussion/comment/251971#Comment_251971

This is great advice, and great direction to head. After his neurologist reported him to the State, he had to go through a cognitive interview, and take the written and driving test. He passed all last summer and I hope he does next time as well. I am looking very closely at his driving and planned on addressing his relinquishing his license sooner rather than later. I had not thought about insurance… that may be the game changer. Selfishly, I am not looking forward to him losing this freedom - my schedule will be dramatically impacted… but we will adjust (fingers crossed).