Need advice

Care4Hubs

I am hoping someone out there has experienced a something similar and can provide some guidance.

Background: My husband was diagnosed with Alzheimer’s “with a vascular contributing factor” in 2023. I would say he is probably in the moderate stage now. To the average person, he seems normal. Short term memory is really bad; and he is confusing some long term memories with shorter ones.

He was always very competitive and has a strong (don’t-tell-me-I-can’t-do-something) personality. He can’t really do simple things anymore. Forget telling him two things at once! He gets frustrated easily. I have stopped him from playing bocce ball and corn hole because he gets so frustrated. We went to game night at a neighbors not long ago and he got angry because he didn’t understand what someone wanted him to do. No fun for him and others around him (people he does know that well at all).

The only other thing he likes to do is golf. He was playing with a foursome of guys, but for some reason, he is no longer part of that group. So I started taking him to play. Yes, he gets frustrated. And sometimes I lose my patience with that. But the issue I am seeing now is something worse.

We play 9 holes and are finished in less than 2 hours. He always has to pee when we go out— It doesn’t matter if he goes before we leave or not. The problem with that is he is going in the bushes at the course. (Not even behind a tree! Though there are snakes around…) The last time we played, he peed right at the tee box! No one was around, except me. But there was a port-a-pot at that hole! I have told him many time that it makes me angry. Either he doesn’t care or doesn’t remember. Or both.

He has always had an enlarged prostate. I don’t know if it is that (I will discuss with the doctor at our next appointment) or if he just doesn’t know that is unacceptable. Or both.

I keep an eye on him while we are home because of a possible UTI, but he doesn’t pee that often at home. Nor does he have to go when we go out to the store, where we are gone for several hours.

He drinks (sips) water throughout the day. He rarely drinks at the golf course.

The issue is, he has no friends in the community, so he does nothing except sit in front of the tv or walk the dog. Golf is the only thing left. After the last time, though, I do not want to take him out anymore. If I want to go without him, he gets his feelings hurt. So I will have to tell him I am going with the ladies, even if I’m not. Sticky situation…

What would you do?

harshedbuzz

@Care4Hubs

Hi and welcome. I am sorry for your reason to be here but pleased you found this place.

My mother was in your shoes with dad. Dad lost his social filter very early in the disease process and became persona non grata at the country club here in PA; at the same time the women in the same social circle stopped including mom as well. In order to get a fresh start, they retired to a golf community In MD. Within a year or so, invitations to join others stopped. Even close friends and family avoided them. They started spending half the year in FL where things were folks seemed a little more tolerant and mom did a lot more socializing independently of dad.

Because dad's ability to behave appropriately in social settings was unreliable, we tended to avoid taking him places where an outburst would ruin the experience for others. We also had the semipublic urination on the course as well as thrown clubs. Sometimes we were able to take him to play a few holes at off times. His world became quite small for a time and so did my mom's.

One piece of advice I would give you is to nurture your relationships apart from your DH. Mom was so focused of dad's needs, even before he needed 24/7 care, that her social circle faded into oblivion. She's widowed now and doesn't really have any friends she could have lunch or go shopping with.

HB

Care4Hubs

https://alzconnected.org/discussion/comment/253272#Comment_253272

Thank you HB. We moved to NC from MD in 2022. It was a good move for me, but not for my DH or “us.” I have made friends, and try to keep busy while I can still leave him alone. I had high hopes for him here being in a community, but that didn’t work the way I had hoped… He didn’t have many friends in MD either and he has no family left (siblings or parents). I am it, besides our son.

HollyBerry

Can you make the "bad guy" someone other than you? Re peeing in the bushes - can you tell him the club really frowns on that, is under new management and the new Whoever is a real Whatever… you build the story. I often resort to "the vet said the dog can't eat people food" and "your (beloved MD) really thinks this senior social program will be a lot of fun." She'll blame me anyway - kill the messenger - but sometimes she's more compliant when some other authority figure is making the rules.

harshedbuzz

@Care4Hubs

Gosh that strikes close to home. Dad had a brother who was embarrassed by dad's behavior (drinking in addition to no social filter) and told another club member they "weren't really brothers". They talked a couple times a year. Dad was inappropriate with one of my late sister's daughters, which mom blew off, so they kept their distance. It was basically mom on a solo mission until she moved back near me.

One caveat, the reason mom moved back was that she nearly died with dad as her partner/medical advocate. Mom developed an autoimmune liver failure and was weak, tired and confused. I checked in by phone every couple of days. When mom answered, she complained about feeling tired. Then she stopped answering and dad would tell me she was shopping or at the pool (which was entirely plausible). Once I even had police do a well check and when the LEO showed up at the door, dad fed him the same malarky he fed me. Cop believed him.

A few days after that a neighbor saw mom at the store with dad. Neighbor was a retired nurse who recognized jaundice when she saw it and drove mom to the ER where she was admitted. After a few days of dad acting "off" the hospital tracked me down as an emergency contact and I flew down to direct her care until she was improving.

Make sure you have someone checking in on you. And make sure your DS, or someone else, is POA for your care. DH doesn't need to know.

If your DH is one to get agitated easily, medication could help. TBH, the geriatric psychiatrist was the most important person on dad's team after my mother.

HB

LearningCurve

https://alzconnected.org/discussion/comment/253274#Comment_253274

I feel your pain. I am on a long and winding learning curve myself. Your DH and my DH sound pretty similar. We attend a local Methodist church in the NC mountains. (We moved here about 7 years ago.) Unfortunately my DH as made a few scenes at church. Folks are still quite kind yet it is clear that some are keeping their distance, which I totally understand. What a difficult journey this is for all of us. I still have so much to learn.

Care4Hubs

https://alzconnected.org/discussion/comment/253291#Comment_253291

I will try your suggestion. Makes sense. I don’t think he will remember what it said to him, though. I figured if I showed him it made me mad, he may remember that emotion. Didn’t work. I do think it is illegal to pee in public anyway, isn’t it???

One time when playing golf, I told him that he can’t walk to his ball when the person behind him hadn’t hit yet. It didn’t seem to affect him. But the next time we went out and I talked to him about it, he said, “You’re right. I shouldn’t do that.” I guess it depends on “who shows up” that day as to how he responds. Frustrating.

Care4Hubs

Wow.

Care4Hubs

It concerns me that I will be left out of group gatherings. I voiced that to my good friend. She assured me that won’t happen. Time will tell. I get depressed as it is because everyone is off doing their things and I am doing less and less. I would rather go places by myself, but I can’t always do that.

Pacony

I can sure relate to that feeling

sandwichone123

This was the issue that let to my stopping taking my dh out. When he decided he had to go, he would want to go wherever he was. The very last time, we'd just left the restaurant when he "had to go," and I was trying to hustle him back in. He tried to go in the grass between the front door and the drive thru, and it was all I could do to stop him.

He lives in MC, and he was going wherever there too, so a year after the restaurant episode they ended up requesting that I supply all-in-one adaptive clothing he couldn't pull down.

SDianeL

have you read the book “The 36 Hour Day”? It really helped me after my husband’s diagnosis. One thing I learned here is that “you can’t reason with someone whose reasoner is broken” so don’t even try. It only agitates them. Your DH can’t understand why it’s not OK to do those things. So maybe try to find indoor activities for him. Sometimes it helps to show them rather than tell them. You go in first and then hold the door open so he can go in. Worth a try anyway?

Care4Hubs

https://alzconnected.org/discussion/comment/253326#Comment_253326

Thank you for your reply. I know it will be a rough road ahead. I started wondering if he does it when he walks the dog. I guess someone will post on the community website to let everyone know! 😑

Care4Hubs

Thank you for your reply. I have read most of the book. Good book.