New here. Not sure of help we need.

dcare45 · July 6

I am new here. My Dw and I have been on this journey for 6+ years. There were signs before that but they didn’t register until later. We have been going along since. I have looked for advice on how to do specific tasks, activities, appointments, etc. from our Primary DR, Neurologist DR, Senior Center, Alzheimer's Association and so on. Could not really find much help for the hands-on tasks and issues. I came to the realization you have to figure it out as you go. Much of the care taking utilities we figured out . So here we are. I can keep up on the general care taking, interacting, keeping her engaged and somewhat happy. However, this comes at a cost to everything else such as household and life chores. I feel I am being sucked into a vortex. Thankfully we found an Adult Enrichment Center DW can go to twice a week for 6 hours. It has been a blessing. It gives me a little time for household and life chores. We are now in contact with a Medicare Guide Program Service Coordinator and she has been helpful.

At this point when I am asked what help we need I don't know what to ask for. It seems most help is a reference to in-home health care or respite at a MC facility. Both are expensive, At the end of 2024 I had to quit working to take care of DW full time and money is a bit tight. I might try in home therapy if DW will tolerate it. I don’t want her to get freaked out with variations of schedules or therapy caregivers. Has anyone else used in home therapy?

I guess one of the biggest issues is we are getting withdrawn from the world. In person friends and family visits are rare. Sporadic texting. DW cannot walk all that well for getting out. When we do go somewhere she is ready to leave in about 10 minutes and gets anxious. The time we are there DW doesn't seem connected to what's going on around her. Even holidays pretty much don't happen. It gets isolating. It is rough when you look in their eyes and they are just not there. It makes me wonder where they are in their mind. It makes me sad knowing at times you cannot reach or connect with them. Dementia is heartless.

Thank you for letting me ramble. I look forward to exploring this site.

AlekoW · July 6

My DW is YOA. I feel you.
New to AlzConnected as well. So far a lot of really good people with perspective and shared experiences. They show up for us.

Ed's mom · July 6

New too, how long can you say that. I finally found people that know, understand and care. If only you all lived next door.

Victoriaredux · July 6

dcare45

Welcome , have you talked to an elder care attorney - they can advise on medicaid in your state and help you get the paperwork you'll need going forward. Estate planning is helpful so that you'll hopefully have something for your retirement later.

You mention home therapy- physical or mental? Physical can be tried to help her with balance etc. but usually ends quickly because of apathy and inability to remember follow-up exercises. Mental- well, dementia isn't a talk it out condition.

I'm sure you'll get a lot of help and advise here.

Number 1 - take care of you. You are the best "therapy" for her .

charley0419 · July 6

this illness truly sucks. On this journey now 4 yrs. I’m nowhere near as many others are with this nitmare but all I can say is hang in and keep the faith and remember your loved one is not to blame for all that happens.

Timmyd · July 6

With regard to getting withdrawn from the world. Early in our journey, the diagnosis pulled myself and DW closer. We did more together and I was determined to keep us engaged and involved in our social circle. As the disease progressed, it was obvious there was no amount of "scaffolding" I could do that was going to be effective. I had to accept that I needed to begin to imagine and build a future life separate from DW. Finding effective in home care was essential to making that transition.

[Deleted User] · July 7

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dcare45 · July 7

Thanks for the suggestions. We have a Dr appointment soon and will discuss speech therapy and physical therapy. Have heard Hospice might be able to provide some. I think Medicare will pay for some of that but not home health care, as far as know.

New here. Not sure of help we need.

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