Need tips for keeping DW in her home as this progresses.

Timmyd

We are clearly in the stage now where I cannot do this in our home by myself. I have set up paid companion care 3 days a week, 5 hours per shift. I think I can also get some help from family for a few hours a week.

I am continuing to look at placement and make sure I am educated and prepared if it comes to that. We live in a modest home in an expensive area of an expensive city. We have saved responsibility but nearby decent memory care can run 10K a month and that will burn through our retirement savings at an uncomfortable rate. (planning would be so much easier if I knew how and when this ends).

In the meantime the goal is to do this in her home as long as possible. I know that limited companion care will not be enough.

For those who have done as much as possible, as long as possible in your home, what in home help did you need after just companion care? Where did you go to find those services? How did you know when more skilled help was needed?

My DW is bonding well with our paid companion care. She is my employee, I am not using an agency. Should I expect I will need more than one paid companion? I was told to be prepared for turnover and start thinking about backup companion now.

Russinator

I have all those same questions. Thanks for asking them for both of us.

charley0419

https://alzconnected.org/discussion/72878/need-tips-for-keeping-dw-in-her-home-as-this-progresses

what Sate you in???

jfkoc

My husband died at home. I had part time care for about a year and full time the last 9 months.

those last months were probably as expensive as placement.

When I understood that I needed help I reached out to everyone I knew and read the obits each week in order to contact the people frequently thanked at the end.

There are good caregivers out there and I found that often they knew each other so if you can get inside that circle you will get good help.

I used Home Instead when my husband was in the hospital and diagnosed with MCI. Later I stayed with him.

KathyF1

I went on Care.com and found two CNAs that are starting next week. Both also very experienced in hospice and more importantly, Alzheimer’s.(Advantage to this site is that you choose and know who’s coming to interview, as opposed to an agency.)The caregivers also recommended I call hospice to come in for an evaluation. Says hospice is not just end of life, to qualify they have to meet certain criteria though. But they said they are wonderful, come several times a week as needed to help. And can do everything for them that would be done needed at end of life. Plus it’s covered completely by insurance. I hope I have the details right but you should look into it!

Timmyd

https://alzconnected.org/discussion/comment/241715#Comment_241715

Thank you for your insight. What was it you were seeing that caused you to decide to get 2 CNAs? What I have seen so far is I wait until it gets too bad before I start getting things in place for the next stage. I do not want to keep making these decisions while I am in crisis mode as has been the case so far. How do I keep from getting overwhelmed and always dealing with stage changes in crisis mode?

SDianeL

since every patient with dementia progresses differently there really is no way to plan in advance. You can only look at the 7 stages and see where she is now and what the next stage may look like. But really no way to predict. If she sleeps all night, is not agitated, is not incontinent then one caregiver may be enough for awhile. If she needs help with medications some caregivers don’t provide that level of care. Once she reaches late stages call hospice. They provide many things. Care, equipment, supplies, counseling and clerical support. Don’t hesitate. Call them sooner than later. I would also consider housekeeping help so you can devote more time to your LO. Full time care may be as expensive or more expensive than a care facility. You could figure that amount approximately by using the hourly rate you’re paying X 24/7 care. Most agencies will do an evaluation to determine the level of care you need so you don’t have to know that in advance.

TooEarly

Hi Timmyd,

I want to reinforce things others have mentioned:

— Don't hesitate. Whether it is to make plans, make calls, reach out. Don't just go over and over things, take some steps. My DW is now in memory care. I kept her home as along as possible — and in hindsight probably too long; many friends began urging me to placement b/c I was really burned out and frazzled.

— Yes, you should be thinking about a back-up person already. I had someone leave abruptly for a full-time opportunity and I had to scramble. You can't predict when a companion/caregiver's circumstances might change.

— Home instead, A Place for Mom, Alz.org are good national groups that can point you to regional, local services (I don't know what state you are in.).

— People like to tell you "you'll know when it's time" for placement. This isn't really true.

It always feels like 60/40, 70/30, 75/25 in terms of feeling any certainty (unless of course there is something obvious like a series of falls). You end up have to make these decisions without 100% certainty.

KathyF1

Timmyd - I should have clarified, one CNA is coming Mon-Wed. The other just on Fridays. The reason I need help is that I need to be able to get away by myself at times. I am praying these 2 girls will have the “touch” and he’ll feel comfortable enough to stay with them. Even if he doesn’t at first, they can cook, clean and hopefully he’ll gradually like them. One reason is that as he progresses I know I’ll need help. And these girls would be able to handle the issues that arise toward the end. It makes me feel better not to wait until I’m desperate. Maybe you can try Care.com-? And interview until you find capable help. Prayers for you!!