When to transition to full time caregiver?

__Dolly__

Hi! I just joined this online support group and have spent almost an hour with the discussions before deciding to post my own discussion.

My DH was diagnosed with CAA in 2022 and had mini strokes after a heart surgery late last year. He recovered well from that surgery and all diagnostic tests this year have been ok (especially a stable MRI of his brain).

I transitioned from full time to part time last month because he was agitated whenever I leave him in the morning and my employer didn’t like the idea of me calling off whenever he throws a fit so I cut my days to part time.

When I got home today though, he seemed different (he was lethargic even though he had good amount of sleep last night) and when he woke up at midnight, he peed on the floor near the entrance of our unit. This is the 3rd time he had done this in the last two weeks and I am very much concerned and worried.

He is ok when I am home with him and has expressed to family that he misses me when I’m not around. We don’t have kids and it’s just the two of us.

Sorry for the long post and any reply will be greatly appreciated.

Thank you.

cdgbdr

A few months ago, I started having DH wear incontinence briefs. I also had a urine specimen checked for UTI. I continue to work full time with a companion with him. He hates the companion but I know he's safe.

fmb

Welcome to the board, though I am sorry for the reason you need to be here. This is a great place for information and support or just to vent.

Have your DH checked for a urinary tract infection. UTIs can cause cognitive and behavioral changes, especially in people with impaired cognitive function.

Do you have your financial and legal affairs in order? You will both need DPOAs and medical POAs, with you on his and someone else other than him as yours. See a certified elder law attorney (CELA) to get this done as soon as possible. They can also help you plan the financial aspects of his continued care. You do not want to put yourself in a situation where you become impoverished by giving up your career.

trottingalong

I agree with the others on a urine test to rule out a UTI first. I buy AZO tests at the local pharmacy, so you can test at home. My DH gets more and more stressed when I am gone. I leave every morning for two hours. He is afraid I will die on the road and his fears are getting worse. Also part of the progression.

jehjeh

My hubby, too, worries when I leave the house. Always telling me to "be careful " even if I'm only taking the garbage out. A longer trip, 20 minutes to grocery store, makes him concerned that I'm meeting my "boyfriend ". While I understand his fear of losing me, it still frustrates me.

SDianeL

one behavior that happened early with my DH was not being able to find the bathroom. Try leaving a light on and even put brightly colored tape on the floor to show him how to get there. Put a sign next to the door of the bathroom I think someone needs to be with him full time if it’s not caused by a UTI. Ask him what he would do if a fire broke out in the house. That’s what a nurse asked my DH and after his answer she said he could never be left alone.

JDancer

Do you have a caregiver with him when you're away? If not, I suggest that as a first step. I know he would prefer to be with you, but you must consider your own needs. It's very hard to provide care 24/7.

If it's not a UTI, you might be at at turning point. Incontinence often indicates the need for a higher level of care.

Carl46

Dolly, I don't know how old you are so I can't really respond to your question about transitioning to full time caregiver. I retired at 72 to care for my wife, and it was no hardship because I would have retired soon anyway. If you are below retirement age, however, quitting your job is a major life decision. In that case, I would recommend looking into other care options like adult day care before quitting your job.

__Dolly__

https://alzconnected.org/discussion/comment/230243#Comment_230243

Hi Carl.

I’m 49 years old and has considered myself as semi-retired. I feel like I need to prioritize him first and I can just always go back to my career afterwards. I am just at the point that I want to be with my DH as much as possible as tomorrow is never promised.

__Dolly__

https://alzconnected.org/discussion/comment/230054#Comment_230054

Hi cdgbdr.

So sorry for this late reply: UTI has been checked and cleared for him. My mom helps me care for him while I’m at work. His daughter is not an option since he doesn’t like it and triggers him to be upset. My mom told me that I should stop working after watching him since he seems sad and refused to eat since I’m not with him (I had to talk to him to convince him otherwise).

__Dolly__

Hi Jdancer,

I asked my mom to watch over him while I was at work. She recommended that I stop working because he didn’t even want to eat when I was not with him. I had to call and talk him to doing it.

__Dolly__

https://alzconnected.org/discussion/comment/230139#Comment_230139

Hi SDianel,

So sorry for this late reply. Yes, we have lights on going to the bathroom but will put on colored tapes on the floor. Thank you for that wonderful suggestions.

Sending you a hug!

__Dolly__

https://alzconnected.org/discussion/comment/230096#Comment_230096

Hi Jehjeh,

He comes with me when I’m taking the garbage out down the hallway. He constantly worries about my driving even though it’s just a short distance. He is very sensitive about other guys liking me but has no reservations in making small talks to women in the elevator 😂

__Dolly__

https://alzconnected.org/discussion/comment/230086#Comment_230086

Hi trottungalong,

So sorry for this late reply. I work 10 hours on weekends but seems like an eternity for him. I really appreciate how happy he is when I come home. He is afraid that I will die on the road too.

__Dolly__

https://alzconnected.org/discussion/comment/230055#Comment_230055

Hi Fmb,

l am sorry for this late reply. Yes, I have DPOA and medical POA in place already (although his daughter didn’t like me taking over her POA). But he was the one who wanted it changed. We ruled out UTI.

Thank you.

SPin-need

https://alzconnected.org/discussion/comment/230086#Comment_230086

I am glad to read this. It makes me feel less alone.

__Dolly__

https://alzconnected.org/discussion/comment/230787#Comment_230787

Hi Spin-need,

You’re not alone. I’m not more vigilant when he gets up from bed and wants to pee. I know it may sound paranoid but I really watch him until he reaches the toilet bowl and will rush to him if he doesn’t go there.

__Dolly__

*now more vigilant.

https://alzconnected.org/discussion/comment/230787#Comment_230787

*now more