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I am the only caregiver for my husband. He sundowns every evening. Some mornings he wakes up with a persistent delusion. He gets terribly anxious and scared if he can't see me. He moves and walks so slowly I feeI like im living life in slow motion. I desperately need some "me time". I tried to leave him here at home with a companion. That escalated his confusion and he felt like he was a prisoner in his own home. That triggered wandering to get free. All our family is distantly far and can't help. Any suggestions?

If your husband cannot allow you to get some help in to care for him I think it must be coming clear to you that this isn't sustainable, and it isn't. You will need to begin to come to some tough conclusions about how long you can give care in your home. I would start with a consult with a good elder law attorney to look into care costs, assets, division of finances in needed to protect your OWN finances for your own future. But the time is looming when you will not be able to do this without grave injuries or health concerns for yourself. And if anything happens to YOU, then what does that mean for HIM.

I am so very sorry. This is such tough stuff and I wish you so much luck.
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Reply to AlvaDeer
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Adult Daycare is a life saver. I didn't think my husband would agree to it, so I didn't ask him. I brought him there for a visit and then I brought him for a day and said that I was going to do errands and I would be back later. Gradually, I increased to 3 days a week. Try it - you'll love it!
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Reply to WearyJean
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I highly recommend sending your husband to your local Adult Daycare Center, where you can have him there up to 5 days a week and 8 hours a day.
They will serve him breakfast, lunch and a snack and have different activities to keep him busy and may have(like most)a spa day where they will give him a shower and even trim his hair and beard if needed.
They do such a wonderful job with the folks that attend. Of course there is a charge, but if money is an issue they do offer financial help, as does the VA if your husband is a veteran.
Even if you can bring him there 2-3 days a week for 8 hours/day, just think of what you could all get done in that time, plus it would keep your husband busy.
It would be a win win for you both.
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Reply to funkygrandma59
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swmckeown76 Sep 24, 2024
Definitely. An adult day care center was a lifesaver for me. I started out w/3 6-hour days, then went to 3 8-hour days, and then finally 4 8-hour days. We used two different adult day care centers. He was asked to leave the first one (sponsored by a church) after he hit another client in the face w/a large ball when they tossed it to each other. It hit her glasses and caused a cut on her nose. They gave me for 10 days to find another one. They provided two other centers that would work better for him because his frontotemporal degeneration was advancing. I called one and they were pretty picky about when I could visit, but got an appointment. It was just so large and I wasn't thrilled. I called the second one from my car in that place's parking lot. They said, "We're serving lunch now. Can you come in an hour?" So I got myself some lunch and then went there. Much smaller and friendlier. It was also associated w/the nursing home where his neurologist was the medical director (where I figured he'd end up eventually). When he went to a hospital, the second day center called me and asked how he was. That hospital stay precipitated his need for a nursing home, and that's the one I chose.
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mrsand4, when you get a chance please fill out your Profile page as that will give us more information, such as your hubby's age, etc. Are the caregivers male or female?


If you haven't tried to find a male caregiver, see if you can find one, someone who has the same interest as your hubby, such as golf, NASCAR, football, soccer, gardening or great literature? Someone who has a common interest might spark your hubby to be more accepting to having a caregiver or companion.
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Reply to freqflyer
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Your husband is “terribly anxious and scared if he can't see me”. You “desperately need some ‘me time’ ". There is no easy answer here that gives what you both want with no-one getting upset. There are some good suggestions that are worth trying, but there is no magic wand.

Many people come to the site looking for answers that will achieve what they want with no-one getting upset. It won’t happen. You need to make decisions about what is workable to improve things, and grit your teeth about the down-side. The only other option is to see if you can last out until your husband is so far gone that he won’t complain – and is that really a good idea for either of you?
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Reply to MargaretMcKen
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That walking slow thing drives me mad. Your husband sounds like he is further along than mine but mine will shuffle through the grocery store, picking up and putting down everything sweet, then stand in the middle of the aisle while I squeeze around him to unload, bag, and pay. At home he will stand in the kitchen doorway and watch me cook but only because I don’t allow him in to stand in the middle of the kitchen. I don’t want to be mean but it’s like trying filling the dog’s food bowl without tripping over him. (Sorry; personal rant.)

Anyway, our closest adult daycare program is 20-30 minutes away and does not offer transportation but I hear is a good one and I’m going to try it even though I need my ‘me time’ at home and I don’t relish an hour in the car each day. Next step after that will be a day companion in our home. After that will probably be MC placement.

It’s really important to plan several steps ahead because you never know how quickly their progression will be, then stick with your plans regardless of how upset your husband gets. (I’m speaking to myself here, too.) That includes arranging the financial stuff ASAP. It’s hard though, when hubby has those strangely lucent days and seems almost ‘normal’.
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Reply to Peasuep
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Is he on any meds for anxiety/depression? If not, now is the time to get this in place.

"Anxious and scared if he can't see me" is called Shadowing and is a common behavior with dementia.

If you can afford an in-home companion, can you afford an Adult Day Care where he goes in the mornings and comes home later in the day? I totally understand your desperation for alone time and self-care so that you don't burn out...

Have you tried starting slowly and telling him the companion aid if for you, not him? Maybe see if you can get a guy? It is possible for him to acclimate to a person, it will just take time. Maybe at first don't leave the house but have the aid engage him in an activity while you have alone time in your home, then eventually he may accept you leaving the premises -- but really do get him on meds if he isn't on any. Call his primary doc about this. It may take a few weeks for med to fully kick in.

My friend's wife with ALZ was paranoid and shadowing, and totally rejected a companion for a while but then eventually got comfortable. The aid had an RN background, so IMO it's important you don't get a newbie who knows nothing about dementia. This is always a disaster. I wish you much success in finding a solution!
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Reply to Geaton777
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Piggybacking on the comment above...You'll need a consistent caregiver ( same one every time). Perhaps, if you haven't tried yet, have the person come while you're home, and work your way to having alone time at home first ( ie. you're outside while he is inside, or in another room) and work towards getting some freedom to leave the house. Easier said than done, I know.
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Reply to TXmomof3
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Agree with others. You NEED to get help. While he is still fairly lucid, bring in a pca as a friend. Have them there with you present. Slowly acclimate and do basics as he gets used to them. Then increase care. Just check mail at first, then maybe a walk, short errand. Slowly leave the house or be in another room. It will never be perfect and be you, but they are trained to work through this and can help him transition. Hang in there and allow your health and needs to be important too.
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Reply to Kquirk1
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I must have some time to myself. My husband doesn't like it, but I do leave him in the care of others sometimes so I can get a break. He complains, but has dementia and has forgotten the next day. Just do it.
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Reply to wantmylife
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