I am having difficulty with my husband being very grabby and clingy. He’s also very fidgety and intrudes on my space. Can you relate?

HI AlzWife. You asked.."I forgot to ask you in my first response: how does your husband react to the companion?" I was worried at first, but we had an initial visit to assess his needs and I introduced the situation as a need for someone to stay with him in case he falls or needs anything while I run errands. I also told him that I would love him to have a friend outside of me. He is quite mobile, but has fallen twice which was very helpful in selling the caregiver help. The caregiver is very good at engaging him and doing little activities, short walks, etc so he has come to at least get used to it. He now doesn't remember a time when we did not having someone come due to his dementia.

Yes, being financially able to continue this for an unknown period of time is worrying, and I don't know what the future holds. I quit work to be a full time caregiver 2 and a half years ago at age 57 so there is no social security or Medicare for me currently. I try to take one day at a time.

For all the caregivers of loved ones with dementia.... On an airplane parents are told to put their oxygen masks on first and then help their children. The same thing applies with caring for your LO with dementia. Take care of yourself first so you can take care of your LO.

Just read through and saw that you’ve received mostly wise advice. Also saw you replied with an important point, that is your need to return to work and provide for your own financial future. Please consider this as important as the rest of the situation. Too many caregivers only think of providing care in the now, and are left in bad straits. I hope you can find a way forward to solve this as you matter too

I can fully understand not wanting to be groped like this, it's not how things should be between mates when one expresses discomfort but the other is clueless due to dementia. He lacks the insight and empathy that's necessary to realize your needs, and is only able to focus on his instant gratification. This behavior is known as Inappropriate Sexual Behavior or ISB in the dementia world and can be treated with medication. Please don't let insensitive people make YOU feel as though YOU are somehow at fault here for not appreciating inappropriate advances or being groped, as if it's "his right" and "your duty" to endure. Its 2023 now, not 1723.

Please call his doctor and have a chat about all of this. See what med can be added to calm his libido down a bit. If necessary, move him into Memory Care Assisted Living.

Best of luck taking care of not only him, but yourself too. We often get so caught up in taking care of others, we neglect ourselves and thats a bad thing,

I have not experienced what you are going thru but I fully understand. First, I don't do needy well. When my Mom started showing neediness, I did not handle it well. She was a sweet lady but not a huggy kissy person. So, either am I. And shadowing, I don't allow that with people who don't suffer from a Dementia. I do not want to turn around and bump into anyone. No one is allowed in my kitchen when I am working in there...not even the cat.

Hypersexuality isn't uncommon in dementia. You say you are aware that this can happen. Have you taken your concerns husband's MD or neuro-psyc doc?

I can't speak to your level of comfort with his affection, but anything that isn't working for one partner is not working. At 81 I remain very fond of my 82 year old partner, and affection always has its place, but of course this level of interaction would drive me pretty crazy in all truth.

Your husband's neuro-psyc doctor may hopefully have some ideas to try. Ultimately, and over time, only you can decide if you can continue with in-home care, or if indeed it is working well for either of you. I couldn't long go on in this manner, myself.

My GFs parents slept in separate rooms once his ALZ worsened. He went to sleep early and was up by 5:30am. At that point he just wandered around the house and was capable of getting himself something to eat. Eventually though, she did need to place him. Both were in their 80s.

I used a monitor for Mom but...I had to put it out in the hall because she snored and having it by my bed...I couldn't sleep. I had it loud enough that I heard her get up. I am a light sleeper. Best thing about her going to an AL was I got a good nights skeep.

You may have to place ur DH at some point. I would see an Elder lawyer at some point about having assets split. His split would go to his care and when almost gone, Medicaid applied for. Once on Medicaid, you become the Community wife, remain in the home, have a car and enough or all of ur monthly income (Social Security and any pension) to live on. I am just giving u the basics an Elder lawyer can explain it all better.

HI AlzWife, I can relate to your situation and the complex emotions that go with it. My husband is in the middle stage of dementia and also shadows me 24/7. I cannot shower, dress, leave the room or even read a book without him right there if he is awake. While I do love him, he is exhausting. I do sleep in the same master bedroom with him, but have 2 adjustable twinxl beds about 4 inches apart so I know when he gets up, but I am undisturbed. He is a little hypersexualized, but I tell him my doctor said I can't yet. He accepts that. I just don't feel "that" way as he is not himself. There are door alarms on the front, back and garage doors. I had the plastic baby safe doorknobs on them too, but I had trouble with them also. I also have cameras in 4 places so I can monitor him when I do escape the shadowing and sit in my "snug" to read and have coffee. I have a caregiver come every 2 weeks for a day so I can get out and have some sort of outside life. There are a lot of organizations who offer companion care. It costs me about $500 a month, but my sanity is worth it. Later, I plan on increasing the care to weekly and then more often as he progresses. Hope this helps and [[hugs]].

This is so common it has a name - shadowing.

https://www.agingcare.com/search?term=shadowing

What about your own room again as a trial?

Would he stay put at night?
Does he need supervision or assistance to get out of bed for the bathroom?
That would make it harder..

Sensor lights in bedroom & bathroom to add safety? Maybe a baby monitor or bed alarm to notify you before he gets up completely?

I would also raise the 'handsy' issue with his Doctor (see if meds could be appropriate) & also call an Alz info line for more ideas.

Your quality sleep is so important. Without it, everything gets worse.

Why not enjoy it and be playful back with him? It's your husband! Remember when you were newlyweds, would this have bothered you then? I'm not sure why this is so awful for you. Do you still love him?

I'm not trying to make you feel bad but maybe try to lighten up if you can. Things could be worse in my opinion. Some wives would love physical contact and attention and instead they get nothing.

Heightened sexuality can occur with some dementia. You can talk to his doctor about this and there are medications that can curb the behavior.
The touching, grabbing should also diminish with medication.
You do not mention that he gets grabby with others but this might happen. It might be a concern if it continues and you have to have caregivers come in and help you.
Reassure him that you love him and be gentle but firm in allowing him to hold hands or in touching.

These behaviors all sound like they're in the "normal" range of dementia. I think he (and you!) could benefit from him being put on a low dose of something to calm him down a bit.

I would get over being humiliated by his behavior and hopefully your adult children are grown up enough to understand the reality of their dad's condition.

I would move back to my own room. Thing always seem to be changing with dementia, but not overnight. He could stay like this for much longer than you're going to like - or it could start changing a month from now (or some other random timeframe).

Do you have any caregivers? If not, I would work on getting some ASAP. You need a break from this. It is a lot to deal with. Especially the always being in your personal space. That would be really hard for me to deal with. He may not like it if you bring people in but that's OK. He may end up enjoying the new people - my mom did. They have ways of working with people to get more cooperation than I could ever dream of.

I had a great weekend, thanks for the well wishes. I hate to ask how yours was because I think your post pretty much summed up how all your days are going. I'm sorry for your situation.

Best of luck.