I'm ready for adult day care

Carl46

I have concluded that I have to have help with this. My wife has stage 5 AD and my 50 year old son has a stew of cognitive disorders, and I am the caretaker for both. He lives in an RCF and she lives with me. Taking the two of them anywhere is very stressful for me and them, because they trigger each other. DW needs 24/7 supervision, so I have to take her when I take him anywhere. It's like holding a cat by the scruff in each hand while trying to drive, etc.

I would need help even without DS. I can't even weed the flower beds without her in tow, and any wind drives her back inside, taking me with her. She can't use public restrooms except "one-holers" where I can go in with her, so things like grocery shopping are difficult. Not to mention that I'm going crazy with no time to do anything I want to do.

A good friend whose husband had AD used a day care a mile or so from my home. I'm calling them in the morning to get the ball rolling. I think she will actually like it, because it will give her someone other than me to talk to.

One of the things I intend to do while she is visiting is visit memory care facilities. I haven't decided to place her, but I may not get a choice. My PCP thinks my caretaker life is part of the reason my blood pressure is not well controlled. Not a good thing in an old man with a family history of strokes.

harshedbuzz

@Carl46

The best thing you can do for both your wife and son is to put your own oxygen mask on first as they say in the airline safety briefing.

Your PCP is absolutely correct. The degree of stress under which you find yourself can do real and unreversible harm to a caregiver. My own mother neglected her health in caring for dad. She ignored my pleas to place him because of the financial hit it would take. He was aggressive and uncooperative so getting him into a day program would have been impossible, and she was loath to spend $30/hr to buy care. I did pitch in— I took him to his many appointments and stayed with him so she could shop, go to appointments— but she needed more.

Her COPD, BP and cholesterol were out-of-control by the time he died and she soon landed in the hospital to sort things out. The BP issue later impacted her vision, blinding her in one eye which meant she can't drive. While we did select her house to be walkable, it's hard as she's gotten older. Her life in Stage 8 is not what she'd hoped and, TBH, neither is mine.

HB

JudyVE

https://alzconnected.org/discussion/71234/im-ready-for-adult-day-care

@Carl46 when my DH was first diagnosed with AD, my SIL (who had been through it with my BIL) told me Don’t wait to get help. I have followed that advice. I’ve had home health aides several days a week since March. Having the aides has been wonderful and DH has been cooperative (he needs help with all the ADL’s, bathing, toileting, etc). Yesterday I toured an adult day care and I liked what I saw. I don’t know how DH will react to it as he gets anxious when I’m away from him. But the social interaction and stimulation a couple fo days a week will be good for him, and for me. So I’m going to give it a go. HarshedBuzz is absolutely correct- put on your own oxygen mask first!

Carl46

Thank you both for your support. My heart had been pounding for hours on the day I wrote the original post, a clear stress reaction.

AlzWife2023

https://alzconnected.org/discussion/71234/im-ready-for-adult-day-care

I’m in the same boat. Visiting the PACE program day care center tomorrow. I’ll let you know how it goes & you keep us updated on your progress. It’s absolutely wonderful to have friends here to share information, insight, and sympathy during this long challenge.

I think about how I sent my kids to daycare then afterschool when I was in college. I didn’t like doing it, but it had to be done. If I could go back, I tell myself I’d stay home with them until they started kindergarten and then work any job part time without getting my degree or something like that. But I can’t change the past. They’ve all turned out well. I have three degrees now. I had to work all through their childhoods and now I feel like if I could leave my kids at daycare, I can leave my husband, too! I don’t know if this makes any sense but everything is a trade off and it’s time for my kids and I to have some breathing room.

MN Chickadee

Adult daycare was a life saver for my family. I'm afraid we would have lost my dad (the caregiver) before mom (the person with dementia) had we not found daycare because the stress of living with a PWD is tremendous. Though the adjustment was very rocky and mom hated it at first, eventually she settled in and it was the best thing to happen to her post-diagnosis. She had activities and socializing at a level she could handle and dad and I had time off from caregiving. This allowed us to keep her at home much longer than would have otherwise been possible. Please do take steps to alleviate the stress; you won't be any good to your wife and son if you are sick yourself (or worse) . Self care for the caregiver is extraordinarily important in this journey and needs to be part of the decision making.

AlzWife2023

Don’t wait to get help is such good advice!!!

Mint

I understand the pounding heart syndrome. I endured many years of that. You need help. You are in a much harder position than I was in it seems. I also had elevated blood pressure from it, which came down after I had some space from the situation.

If adult daycare is enough, that’s great but placement may be necessary. As you probably know, I placed my mom November 1 of this year into assisted-living. It turns out that some assisted-living‘s in our area accept fair complicated patients which I did not realize any of them did. Since you are considering this, I would suggest that you look into CarePatrol.com. It’s a nationwide company and if there is a franchise in your area, I found them extremely helpful. They are sort of like a liaison between you and what’s available out there. That’s how I found out about the assisted living’s that would take my mom, there were two in my area.

When you go there, you’ll simply enter your ZIP Code and then it will bring up any franchises that are in your area. I wish you well with this. there is no charge for their service to you. My understanding is they’re sort of paid like an insurance agent is paid.

It’s such a relief now that I don’t have to worry if there’s a snow or the electrics out etc. about caring for my mom as well as myself. My mom was very uncooperative with me. Before when she got really uncooperative, I would just leave and then, I had to go back sometimes fairly quickly but usually by then she would be a little better to me. I don’t blame her for any of this. It’s just how it was. Now like yesterday morning when I went in, she started some of the same old stuff and I could just leave and I didn’t have to worry. I didn’t have to go back there were people helping me. I’m so thankful for those people . I did end up out of necessity him to go back in the evening and there she was in the lobby and you know what we did just fine. She was great that evening. I find the girls working with her very beneficial and one told me she feels that if my mom has a bad time during the day it’s morning, so I’m going to try not to visit in the morning unless it’s a necessity and will start trying to always visit in the afternoon .

It does cost quite a bit especially because my mom is a pretty high level of care now it can decrease if my mom starts Being a little more independent. That being said it would be way cheaper than even getting a Care giver just for Night Shift and then you can’t count on them from what I see on here. Plus, I would still have 16 hours to cover, even if they show up at night. I also looked into a nursing home first because that was before I had met care patrol and I thought that’s what we would have to do and it was quite a bit more expensive than the assisted-living at its highest level. So for me, it’s been a good decision I feel so far. I wish you, your wife and son all the best .