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I am having difficulty with my husband being very grabby and clingy. He’s also very fidgety. For instance when I sit down with him he’ll tap my leg and squeeze my hand compulsively and it’s very, very uncomfortable. He’ll slap my backside (lightly) when I walk by. I find this humiliating & he’ll do it in front of our adult kids. He stands in front me in thresholds and stands very close to me in the kitchen, etc. In bed he’s like an octopus. You get the picture. I’m getting very sick of this behavior. When he approaches me I get into a protective stance. It’s harassment, but I know he does not understand that. Will it get worse? Will he move out of this phase? I feel like it’s been going on a long time but I didn’t know it was due to dementia. I had moved to another room to sleep before I realized he had dementia, but now I’m afraid to leave him alone at night. Any thoughts or suggestions appreciated. I hope you're all having a good weekend.

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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.
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AlzWife Jun 2023
I’ve had a good weekend. Thanks. It’s all relative. Our oldest son moved in with us to help out, but he works from home & is always working yet he provides a much needed buffer.

I appreciate all the replies. It was just time for me to vent about the shadowing & agitated behaviors b/c I realized how taxing it has become for me. I have thought that he might benefit from other caretakers as a change of pace but he doesn’t realize he’s sick & there’s a shortage of PCAs in my area. That being said, it’s worth it to start looking. I need to get some financial help to pay for help, which is on my to do list. I think I can tell him the helper is more of a housekeeper & he’d buy that.
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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.
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AlzWife Jun 2023
He’s very focused on me & I don’t see him getting grabby at this stage with anybody else but maybe later on. We do not have any outside caregivers. The other caregivers are our adult children but only occasionally.
Thank you for your suggestions and support. I try to to be kind but firm. The worst is at night when I am sleeping & he’s grabbing in his sleep. I think sleeping separately is on the horizon with some of the suggestions others have made. Thanks!
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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.
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AlzWife Jun 2023
This reply, while presumably well meaning, is not helpful. The “attention” is not normal or natural … it’s a symptom of a disease. It does not look or feel like regular affection. Plus, it’s not just sexual, it’s shadowing and agitation directed towards me 24/7. I think asking if I still love him is very insensitive. Of course I love him, but he’s no longer himself. The relationship has changed to him becoming like a child.
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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.
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AlzWife Jun 2023
I definitely need my own room. I also need to move the dog into the new room with me because a big issue is my husband jumping up early in the morning when the dog stirs and wanting to let the dog out unleashed or wanting to walk the dog unsupervised which is dangerous.
So it’s gonna be a little complicated. For his own safety he doesn’t really wander yet. I can certainly get sensor lights and a baby monitor. Those are good ideas. A friend suggested a Ring system for the door that lets off an alarm when the door is opened. Again, he’s not quite at the wandering stage but I realize anything can happen overnight (no pun intended). I can see behavior that could contribute or lead to wandering like him forgetting what he’s doing and going in circles.
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This is so common it has a name - shadowing.

https://www.agingcare.com/search?term=shadowing
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AlzWife Jun 2023
Thank you for the link. It’s very helpful.
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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]].
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AlzWife Jun 2023
This is a really helpful reply! Thank you! It’s comforting to hear from someone who is experiencing similar difficulty. I really appreciate your generous reply. I don’t really want to leave our bedroom & the configuration of our house would mean he’d be on the main floor alone if I did move to another room. I’ll see how it goes. I’m glad that you’re getting your breaks. I will look into specialized care & once every couple of weeks is not something I’ve thought of. I’ve just been relying on my kids and there’s often guilt inconveniences and extra stress therein. Thanks!
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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.
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AlzWife Jun 2023
Thank you JoAnn. We have the financial benefit of not being legally married. We’ve been a couple for 30 thirty years with three children…which is why I call him my husband! LOL. I still need an elder lawyer or maybe I can do the Medicaid paperwork myself. The car and house are mine. I’m only 50.

I had to laugh about the baby monitor picking up your mom’s snoring. My husband has mostly stopped snoring (it was really bad) since I’ve been giving him a Pepcid at night. I think I might be a worse snorer now, but he sleeps like a rock!

Thank you again for your response & good advice. I don’t feel so alone!
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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.
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AlzWife Jun 2023
I think we’re still in the realm of being well able to cope at home. A lot of the physical stuff is his anxiety I think; not necessarily sexual but him looking for comfort. I will talk to his doctor this week. Thank you for your concern & support!
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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.
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AlzWife Jun 2023
That’s how I used to be in the kitchen, too, LOL! Thanks for your support!
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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,
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AlzWife Jun 2023
Thank you lealinnie1. I definitely think anti-anxiety meds could help with some of these behaviors & I wouldn’t have thought of it myself. So I thank you & the other posters for your advice, support & well wishes. It helps a lot!
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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
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AlzWife Jun 2023
Dear Daughterof1930, it’s really helpful to hear this. Thank you sincerely.
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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.
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AlzWife Jun 2023
Thank you. Good luck! Keep listing! I will.
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