Been lurking

HangingIn

Last night, after lurking here for a few months, I decided it was time for me to step out from behind the potted palm and introduce myself. I started to write about our dementia journey, describing how we got to this point but when I looked back at what I’d written, it just seemed so convoluted and long that I wondered who on earth would want to wade through it. I’ve never been one to use a dozen words when a few hundred are much more satisfying, but maybe a brief summary would be better.

My DH was recently diagnosed with “an Alzheimer’s type of dementia,” signs of which I started to notice some ten years ago. It started with little things such as repeating questions and comments, and has progressed at this point to forgetting to register the vehicles, being unable to manage the checking account he was responsible for, and losing things, most notably his keys. And, most recently, talking to me or about me as though I was someone else. I finally asked him if he knew who I was, and he wasn’t certain (it’s possible that my even asking the question caused him to think that maybe he *didn’t* know who I was). He did ultimately and tentatively say, “I want to say you’re Jo” and was relieved when I told him yes, that was right. It was after this particular episode that I started making appointments with his doctors. It took two months to get his MRI, and there are a couple more doctors we need to see.  

I’m starting to get my legal ducks in a row. For now, he’s still mostly the same kind, funny, gentle person he’s always been. I’m working on patience, which has never been my strong suit, and looking into therapy for myself. I’ve cried more in the past two months than I think I have in a decade. And I’m telling myself that, while I know I have some important tasks to perform, I should stop looking ahead to what may be coming and appreciate this time right now, while he’s still mostly himself.

Once again, I’m turning this into a lengthy missive. I’m glad this forum is here. Even as I’ve lurked, I’ve found it helpful.

Jo

Jgirl57

Lurking is good but glad you are out from behind the potted palm. Welcome. There is a wealth of knowledge here. When I had to take over all the household/vehicle management I was a bit resentful because my HWD/Alz was not very happy about it but I knew I had to take the lead. (Yes, lots of tears). There more it sunk into my head that he really was not able too, I was not as anxious. ( and I started a low dose medicine for anxiety for me). I try to plan for the future but I generally take it day at a time .He is stage 5 so we still have a long road ahead. Thank you for posting and sorry you have to be part of the group

S. Lynch

Hello- and welcome to my lifeline. This is the first post/response I’ve written. I have visited here frequently over the last two years, but especially the last 6 months. My DH is advanced rapidly (to me) the last 6 months while I had major health issues. This forum has helped me with financial and legal resources, caregiving ideas, and just emotional support in this very lonely journey. I have a priority list of tasks, some days just seem too much to get the call done. Be forgiving and kind to yourself. Do what you can, when you can. Before he wakes in the morning, during DH’s nap. I recently found a caregiver who can come once a week starting next month. I may have to use my pickup as an office to get things done!

I hope you can find support here, and know that crying seems like an important part of it for me. I hold it together in almost all places, except here. The stories and experiences of others shared here is a safe place for those of us on this journey. Thank you for being brave and honest. You are not alone.

M1

Welcome Jo and S Lynch. Though sorry you need to be here, glad you found this group. Your stories are important too and may help someone else. And i think the writing and reading is therapeutic for all of us. The less alone we are on this road, the better.

SDianeL

Welcome Jo & S Lynch. This is the place for support, venting, knowledge and even tears. My DH is in Stage 5 going into Late Stage 5. He was diagnosed 2 years ago. It's so overwhelming at first. I made lists. They helped me seem like I had control over something that is impossible to control. Definitely get the DPOA. Within a few months my DH could no longer sign his name. I have used it several times. The doctors don't do much except diagnose & give medications for behavior issues like anger, aggression, depression. The book "The 36 Hour Day" really helped me when he refused to shower and became angry. This forum has helped me even more. Love Jo's comment about trying to focus on the moment and not the future. My husband is no longer the person he was. He lost his emotions, the ability to reason, his sense of humor. He does still know who I am but I showed him a picture of me recently and he asked who it was. He forgets he had 2 daughters, he forgets the grandchildren's names and he calls his grandson his daughter's brother. Recently I finally got him to let me do his medications for the entire week because he was getting upset when he tried. He reluctantly agreed and after I finished the first time, he took a $10 bill out of his wallet, walked up to me and said thank you and gave me the money. He said it was "my tip" -- I had to turn my head so he didn't see the tears. What a funny sweet thing to do and so unlike him the last 6 months. I'll take it. Someone asked me how it was going and I said "it's terrifying & heartbreaking" that's the only way I can describe it. The Alzheimer's Association has support groups in many areas that you can participate in online or in person. You can search for it and they are listed by state and city.

[Deleted User]

The user and all related content has been deleted.

Ed1937

Jo and S, another welcome. I'm sure by now you know that you'll get support and understanding here.

"And I’m telling myself that, while I know I have some important tasks to perform, I should stop looking ahead to what may be coming and appreciate this time right now, while he’s still mostly himself." I think that is great, and that would make a big difference in how hard caregiving can be. Never see posts from other people, then let is scare you to death because many times the things that seem so bad will not be in your future. It might be good to know of the possibilities, but crossing that bridge before it gets here only makes things harder than necessary.