His dementia has progressed to the point that he cannot handle any of the usual home, yard or financial chores anymore. He can’t maintain friendships and has no hobbies. My hands are full with all the chores, so when he follows me around asking, “how can I help?” (when we both know he can’t) it is frustrating for both of us. If I suggest something I’m pretty sure he can do he almost always says he doesn’t want to. Instead, he says he’s going to go out and take a walk in 95 degree heat or phone someone (although he can’t find the number or use the phone without assistance). He can't carry on a coherent conversation so he will seek me out, whatever I’m doing, and hand me the phone. Oh, and every time he needs to use the bathroom he has to find me and tell me, “I’m going to go tinkle.” What is THAT all about? Anyway, he is bored stiff and he has me on a very short leash. Any suggestions?
You haven’t completed your profile, so we know nothing about your circumstances, but you probably need to look at major options (like splitting your finances, so that you aren’t ruined yourself if he needs AL). Turning yourself into a slave dealing with ‘tinkles’ (!!!) is not a good plan for the rest of your life.
You can find Adult Daycare at a Senior Center nearby that you can take him to a few times a week. He will get lunch and easy activities. You may need to pay for it.
Call his Doctor and ask for some Home Health assistance (free with Medicare), or hire someone to come babysit him twice a week. They can entertain him while you get things done, fix his lunch, help with laundry. How do you go shopping for food? He can't be left alone. Tell his Doctor you need a break and that he's following you constantly and stressing you out.
You will get worn out from care giving a (supposedly) helpless husband and a big house. The "lazy" routine gets old quick. Give him chores early and tell him "No Lunch or Dinner" until they get done. When he brings the phone to you, tell him you are busy. He can do things, he's just having more fun following you around and pestering you. You do all the work, and start getting very frustrated and resentful. Have him fold laundry, water plants, dust, or do the Karate Kid thing and tell him to go wax the car! LOL!
He shouldn't be taking a walk alone either. Be glad he's not incontinent. Pay a local college kid to take him to a park and back. He needs some new faces around, so he'll stop shadowing you.
Put him in adult daycare a few days a week. There are activities in many adult day care centers that cater to every level of dementia. Many even give showers for people who need hygiene assistance and they provide meals.
You can also hire him a companion to take him out for a walk or a drive a couple times a week. Or out for ice cream. Or to just sit with him and watch tv and talk.
Try a caregiver website like care.com or nextdoor and advertise for a male companion to an elderly man with dementia. You will find someone. Or try a homecare agency. They will help you.
Ask them to vacuum. But they can’t figure out how to turn it on, lower the handle or plug it in. In the middle of the chore they walk off and leave the vacuum on. Or unplug it because they don’t know where the off switch is. And need help putting vacuum away.
Ask them to dust. Show them again how to use the swiffer duster. Show them what to dust. Demonstrate. After 2 minutes they forget what they’re doing and wander off to somewhere else. Or show up at your side and ask the same question six times.
Ask them to unload dishwasher, which they used to be in charge of. Show them how. Explain what the dishwasher does. Stay to supervise and put the dishes away, which they can no longer do. Finish unloading dishes when they forget that’s what they’re doing and throw an apple core into the half empty dishwasher.
A lot of this advice is great until it isn’t.
Thank you all for your helpful responses. It looks like a day program would be a good fit for us as we progress toward MC. I’m going to start looking this week. Fingers crossed that I can find one close by that offers the level of care my guy needs. It is amazing how quickly things can change with this disease; since my original post he has become incontinent during the day as well as at night so that will change my search parameters.
An OT appointment is in the works as is another neurology visit; it’s been a year since mini testing.
If it appears by this post that I am on the ball with this I assure you I’m not…I am fighting it every step of the way, which is ridiculously counterproductive but it’s the way I’ve always rolled. I appreciate you all and this forum for nudging me toward reality.
They will serve him breakfast, lunch and a snack, plus will have different entertainment and activities to keep him busy.
Of course there's a cost, but it's worth every penny. And if money is an issue they do offer financial help, as does the VA if your husband is a veteran.
It does sound like your husband is doing what's called shadowing you, and unlike some of the posters on here I believe from my own experience with that with my late husband, that the reason they do that is because they are afraid of what's happening to them and their brain, and they just want to know that someone they trust and love is near by. It makes them feel safe, and I certainly can understand that.
And again I can tell you from my own experience that this too shall pass. There's no reason to be harsh with your husband about it. Always better to be compassionate and understanding.
So I think if you can get him to the Adult Daycare Center, that would give you a break and allow you the time to get things done that you need to and time to just relax if you want, as you must take good care of yourself if you are to continue on this journey with your husband.
If your husband is a Veteran the VA may offset the cost of the Day Program or if finances are an issue the Day Program may have ways to do a sliding Scale Fee. Many Senior Centers have funds and Grants that can be applied for.
Please do not let him go out for a walk on his own. You can never tell when he may not be able to find his way back home.
If your husband is a Veteran the VA may also have programs to provide a Caregiver for a few hours a month that might help you as well. (The VA also now will pay a Spouse to be a caregiver)
And the Senior Center may also have Grants for Caregivers as well.
🤣Be grateful he is letting you know he has to go to the bathroom and he is actually using the toilet! Some don't. (and be watchful for the time when he stops telling you and you have to accompany him to the bathroom each time)
Adult care was a needed break for me and my husband. I placed Mom 3x a week. Monday, Wed, and Friday. She was picked up at 8am. I then took my shower and DH and I went out. She was given breakfast, lunch and activities. They gave her a shower and some PT. She was home by 3pm. The reason for the 3 days was because thats what she could afford. I also felt that she needed a day off in between.
I know you have tried to get things together for him to help.
I would continue to do so.
Simple chores such as folding laundry can sometimes help.
I know you are wracking your brain. I would ask doc for an OT consult so that you can have a way to find what might work for him. And do consider some daycare options where there are activity directors, art and craft work, and etc.
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