Newbie trying to figure out the future

Windsock

Good morning all,

so glad to have found this forum ( in a way ). From what I’ve read so far I should be feeling fortunate to be where we are in this journey. But I’ve been a bit resentful and desiring some time to myself on a regular basis. I guess I’m feeling guilty now having read where others are dealing with much more difficulties than I am. My DW is now in maybe stage 4 or 5?? It’s been 8 years since MCI was diagnosed and compared to what many of you are experiencing we have a pretty good life ( for now I suppose ). I do most everything for us as she can’t handle recipes or finances or yard work, etc. She isn’t interested in cleaning. She hates to be alone! I get a 4 hour respite once a week when our daughter takes her to lunch. Occasionally I can get 2-3 hours at my shop to work on projects but then she is upset thinking I’ve been gone for the day. BUT! She dresses herself, bathes herself, no trouble with mobility (although she fractured her sacrum in a fall 3 years ago and can’t walk too far because of the pain). So, I shouldn’t be so resentful! And appreciate where we are at! But now reading your posts and researching this horrible disease I want to be planning for the what the future holds. Should we live here where there is so much care to keep the place up? Should I sell my hobbies that pull me away from home? Travel now before care gets more difficult? No crystal ball, here. Thanks for listening, I’ve got to get the coffee going and sign off this website as she would be hurt to know I was here when she wakes up. I’ll use one of those fiblets, I think ….

charley0419

My wife I’d say in stage 3-4 does it’s yr since diagnosis , has anosognosia. Everything just like your wife. I’d recommend reading 36 hour day.

Windsock

https://alzconnected.org/discussion/comment/188552#Comment_188552

I’m sorry. I don’t understand “ reading 36 hour day”. Is that a book you’re recommending? How many years since diagnosis? Thanks!

[Deleted User]

The user and all related content has been deleted.

dhamilton2023

https://alzconnected.org/discussion/comment/188552#Comment_188552

Agreed. I’m reading 36 hours now. It’s really informative.

Windsock

https://alzconnected.org/discussion/comment/188567#Comment_188567

Thanks

Denise1847

Check out Teepa Snow and Tam Cummings on You Tube. Please keep in mind that not all journeys are the same. There are different areas of the brain that are affected based on the type of disease so the progression is not the same. However, everyone will tell you to get a Certfied Elder Attorney now to take care of a DPOE and finances. If she can travel with her pain, they do so now. Make plans for keeping her all on one floor eventually. Stay where you will have the most support - it will become critical and a life saver. Don't give up your hobbies as it will mentally help you stay sane. I hope this has been helpful.

SDianeL

Welcome Windsock. Glad you're here but not for the reason. My husband was diagnosed 2 years ago but had symptoms for a couple of years before. He is now in Stage 5-6 with Alzheimer's-Posterior Cortical Atrophy. As other have said, get the book "The 36 Hour Day" which was recommended by a nurse. It helped me a lot understand the illness and gives tips on how to communicate and get them to do things. Respite care is necessary for you. I haven't been able to leave my husband alone for 18 months. He no longer uses the phone and if something happened, he wouldn't know what to do. We were traveling full time in an RV, I used the DPOA the attorney prepared to sell it and move us into a small apartment that I could manage. We tried one trip a year ago with my daughter and it was so stressful for him and me that we won't be going anymore. As her care takes up more of your time, you will either need help or move to a place that is low maintenance. If you decide to move, don't wait. The longer you wait the harder the transition will be for her. Nobody knows the progression for an individual, not even the doctors. This online community has really helped me a lot. To be able to vent and get advice from other caregivers is so helpful. I found this handout helped me understand the illness & behaviors. Just remember that each individual may have behaviors in 2 stages. I use this list to note behaviors and communicate the behaviors monthly to all his doctors. https://tala.org/wp-content/uploads/2019/04/Tam-Cummings-LLC-Handouts.pdf

Windsock

https://alzconnected.org/discussion/comment/188589#Comment_188589

Thanks so much. Very helpful. And it feels good to just communicate with others who are experiencing this journey. Great resources.

Windsock

https://alzconnected.org/discussion/comment/188585#Comment_188585

So very helpful. Thanks so much. I’ve seen a bit of Teepa Snows videos. We do live on one floor for the last 29 years so potentially can stay here but the property is a bit of work so I need to allow myself to get help. :-)