Want to continue my activities … advice?

JC5

DH has never been very social nor has he had many interests - just one, but that is fading also. He’s always been a homebody and I on the other hand have always been socially and physically active. I can’t seem to get him interested in anything but the TV. I still continue my activities but not as much as I did. When I go out with friends or for my walks his response is always a very sarcastic “Well Hope YOU have fun”. Kind of takes some of the joy away. Sad to say I’ve given up on including him or finding things for him to do or places to go, he just won’t agree to it! Thus I’ve found myself cutting down on my activities so he won’t feel alone ( he follows me everywhere and generally doesn’t really say much). Any suggestions? I miss my walks and going to exercise classes and “ laughing with my friends”. He is still ok to be home alone and I want to take advantage of that time before I can’t. Thank you.

ButterflyWings

Could a friend or even new companion caregiver coincidentally visit him when your activities are scheduled? That way, he would have some company and honestly, supervision (casual observing every move he makes and reporting any concerns to you later).

You definitely need to get out and to maintain your friendships and activities. You are as important as he is, and the guilt is misplaced though we all feel it at times. You didn't cause his disease and can't cure it, nor do you want to have two of you taken down by dementia. Good for you in following these healthy instincts.

Protect him, and yourself, by introducing a friend visitor early. You don't have to tell him why -- most of us feel in fact it is best not to say anything that would suggest it is a sitter for him, so you can go out. I didn't see what stage you believe he is currently, but can tell you even in very early stage 4 I was STUNNED at some of the things I saw my DH doing or trying. Not leaving him alone will likely be an actual necessity sooner than you think, so looking into formal respite options now, is a good idea. E.g., his insurance may pay for 30 days a year up to 6 hours each day, so you could get out for appointments, fun activities or just alone time at least 2 days out every month (say every other week or weekend) and still have some days left over. There are other programs too, so it adds up.

Katielu

Boy does this sound familiar. DH is like Velcro. Haha. I have stepped on him while making dinner because he is right behind me as I move around the kitchen. He was told to keep him mind active and to exercise. He walks if I walk, I thing else. He “ is not a hobby” person so I stopped suggesting. He will read a book, on occasion, and if he likes it, he can’t stop until he is done. I get the same thing when I leave, “how long will you be gone, I guess you’ll have fun while I wait here”

inhave started “ blaming” needing to go out, on others. I have said “ she is struggling with her daughter and needs to talk so we are going to walk”. Something like that. I do go to a support group once a month, he says it’s so “ I can talk about him” I tell him I NEED to go. That is as much as he acknowledges his dementia. He is still doing ADLs without much reminding. But mostly sits.

but GO, I feel like we have to. Find a reason you have to go, but GO!

JC5

Thank you for your advice! So appreciate the feedback!

Iris L.

PWDs gradually lose their ability to initiate activity on their own. They do better with a another person to gently motivate and initiate. They need to do failure-free activities on their level.

Iris

Denise1847

Dear JC5,

I feel your frustration. I used to be able to go out for a couple of hours and feel revived. I am now hearing, "I can't do what you do." "It would be nice if I could tag along." He says this even though he doesn't want to do anything. I have suggested we visit his friends, go to a putting green or driving green, play checkers, put a puzzle together but those are a "no". It comes down to him wanting me to entertain him with driving him around or going to lunch or dinner. I ask him what he wants to do and he says he doesn't know. I feel badly for him but this is a big part of his personality to depend on me to take care of everything. He says that "I always used to take care of all of our plans." I take him someplace usually every day. Yikes! He is stubborn and proud so it will be very difficult to bring in a sitter.

I think this disease sucks the life out of the caregiver while the patient is oblivious to what is happening. We are in a fight for them and our own sanity.

Davegrant

"We are in a fight for them and our own sanity." I really liked this comment JC5 and I think it accurately describes my situation. My DW wants me to bring people to the house and asks me at least five times a day, who is coming over? My wife loved going out with her girlfriends and she loved being surrounded by her children and grandchildren. Most of the girls have passed and my DW cannot follow conversations because of her dementia. I do manage to have several family members over to our house each week. My DW loves having them around even though they direct their conversation to me and DW "roams" around the kitchen rearranging dishes and food. She is happy to have them here.

I started working with a counselor and he is having me pursue my goals which are exercising and going to my AA meetings. We are only talking about 6 hour a week that I have respite time. I am pleased with some early results as I am feeling that they are my things. It's a start. I was doing most things online but it is better in person. My DW resists me ever leaving the house but using fib-lets I get it done.

Ed1937

I'll make this real short. You can't save him, but you can save yourself. Take advantage of the time when he can be left alone, or with a friend.

terei

As far as bringing people to the house, I would bring back the Covid excuse. Sorry, dear, until this covid wave is over, we can have only limited guests.

As to complaints from your LO PWD, try to come up with excuses to go, like the poster Kat mentions. Additionally, caregivers, never lose sight of the fact that YOUR comfort + wellbeing is AT LEAST as important as your LO’s. Keep doing things that maintain as much a normal life as you can, regardless if your LO likes it or not.

trottingalong

I’m in a similar boat. Thankfully I have had a routine for years on going to the barn to spend time with my horses every day for at least two hours. Then I let my DH know if I am running errands after that, sometimes sneaking in a quick walk alone. I have also established a pattern of walking with a friend twice a week for an hour each time. He does well with patterns. Daily he takes a walk up a few doors from us to visit a friend. That’s his routine. I will ask him to go on a walk with me and most times I can get him to do that. My world has shrunk dramatically but I still manage alone time.

toolbeltexpert

Jc5 you have gotten a lot of great advice and it's hard to realize that you need to Do what you need to do to recharge.. I hadn't realized just how isolated dementia had taken me out. Even when dw went to mc I was still isolated, You described my dw, she didn't want to do anything social, which meant I didn't, she would say she didn't have a life but I did. I have finally taken a trip and am with my family as I am writing. It's day 2 since I saw dw. She has been in a mcf a year this July. I am working hard on learning how to live again, dementia really does suck the life out of the caregiver as well. So many had given me that advice you are getting and not all of it may apply because we are all in a different situation.. even the staff at the memory care have encouraged me to just do it. I hope you can find that way that works for you.

Stewart

Oma

Hello! I am new to this website and learning to navigate a little more on this platform. I am 76 and am the DW to my DH ( 81 yo) who started out with a stroke/w/Aphasia, which now has lapsed into declining dementia, nearly 4 years post stroke. I don’t yet know the difference between that and Alz, but the stories shared here about going out to run errands, or just walk, or spend time w a friend are very interesting, and I can certainly relate. As I write, we have “Hm Health Nurses who come to the house, ea about 1x/wk - 1 for PT, 1 for blood pressure and respiratory, and 1 general nurse. DH was hospitalized in ICU back in April for Pneumonia in both lungs due to sleeping and laying in bed for up to 20 hrs a week. He also has COPD, and we struggle with some very expensive meds such as Trellegy and Eliquis. While in the hospital, they took him off Eliquis and put him on Warfarin, which after a week upon discharge he bled out and returned to the hospital! Since he’s been home the last 2 mos, his dementia has escalated, and there is so much to do, and paperwork, bills, housework, shopping, cooking, time & appt management, I feel like there’s just not enough time in the day to get things done! Friends of mine don’t really understand how isolated I’ve started to feel, and I long for some of his friends to either come and visit him, or take him out for a little while. I definitely need some ME time, but haven’t yet gotten connected to a facility where I can take him to for a short while while either go to a Dr’s appointment, or to a Bible Study, or even out to a movie or something like that. Well, enough said for now….I look forward to connecting with all you lovely people in the near future!

Martha (Oma)

JC5

Thank you all for your very helpful suggestions. So taking your advice! I’ve spent a good part of the day pumping out water from my basement the using the shop vac due to the rain we had. My friend asked me to go for a ride on her boat later this afternoon. At first I hesitated as there is more clean up in the basement and then decided to take your advice. Being on the water brings be peace calm and happiness so I’m going! Than you!

Marta

Hi, Oma. Welcome to the boards no one wants to be on, from another Oma with the name Marta.

You may want to start your own thread so more members see it (click on the +).

It is likely your DH has vascular dementia, since the stroke was caused by a blood vessel issue. That said, it’s common for AD to co-exist with VD and even other dementias.

Are you an Oma due to Dutch or German heritage? I was born in Amsterdam.

Again, welcome!

jfkoc

Please be more that certain that your husband is safe when you are not there. This would include calling 911, not using stove etc, can call you etc.

I personally would not go anywhere unless I could be home in a flash, Sorry, this would include a boat ride.