1. < Caregivers: Dementia

Starved for affection/attention

Posted by judimahoney @judimahoney, Mar 27 2:48am

I feel like I am not married anymore.
When I read about what others are experiencing, I remind myself to be grateful, then quickly wallow in self-pity again (but I am taking action and utilizing resources!).
I am experiencing grief over a loss for a person (my husband) who is still here, and still high-functioning in some ways.
It's soul-crushing to not receive the human touch that we all need, when my loved one is right next to me.
When he was first diagnosed I would ask for affection and let him know I have needs; seems like a waste of time now.
I am not just talking about the behind-closed-doors intimacy, but the little things couples usually share like holding hands, a special look and smile.
I asked my husband for a hug today to see what would happen. He started laughing, but did give me a hug that set a record for brevity. Affection and touch seem to make him uncomfortable now. Before this diagnosis I just thought we were having trouble in our marriage.
Coping strategies, counseling, chatting with friends and loved ones only goes so far.
At the end of the day I'm left feeling lonely in my marriage, and feeling like I just have a friendly roommate now.
Heavy sigh..

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

meitsjustme | @meitsjustme | Mar 29 6:58am
In reply to @coping123 "@judimahoney - The lack of intimacy can be devastating. It’s possible it’s a stage he will..." + (show)
@coping123

@judimahoney - The lack of intimacy can be devastating. It’s possible it’s a stage he will pass through. It’s not usual for the person with dementia to go through a stage of extreme self-centeredness. It can happen while they are still functioning fairly well. It’s a survival mechanism that helps them adjust to coping with everything that’s happening to them. I went through this with my husband when I was diagnosed with breast cancer about a year ago. When I shared the diagnosis with him, he rather callously answered “They can just cut it out and you’ll be fine right?” That was truly not the response I expected from my loving, caring, compassionate husband. I can’t speak for what would work for you but it was my faith that got me thru that season. He has since returned to being touchy-feely with both of us taking the initiative. Since the emotional, intuitive side blooms as the reasoning and rational side diminishes, I make sure that good feelings are associated with contact, sometimes in the form of complementing him, reassuring him, and telling him how important he is and how much I love him. Sometimes I get a chuckle and sometimes I get a loving response. It just depends where he’s at in the day. You’ll become more important in his life as he realizes how much he needs you. Use this time to build trust so he knows you’re there for him, and that could make the touchy-feely bloom again.

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Thank you for talking about their extreme self-centeredness as being a survival mechanism. TV That'll help me when I get angry about my husband's behavior. If I can look at it from his perspective, I'll be more understanding and able to relate to him with love rather than frustration. It's a hard thing that we're all doing, but this group helps a lot.

REPLY
teacher502 | @teacher502 | Mar 30 3:51pm
In reply to @bonnie48 "Last week my LO sneaked out of our local grocery store & walked 3 miles along..." + (show)
@bonnie48

Last week my LO sneaked out of our local grocery store & walked 3 miles along a highway. Local police brought him home 5 hours later. Yesterday a social worker with Adult Protective Services showed up at our home during a snowstorm & asked me if she could help us. When she heard we are not on Medicaid she had no ideas for me except to ask if I had thought to ask our children for help. So 1) Why do “helpers” insist on telling us to ask adult children for help, as if we are too stupid to consider that? and 2) Can Adult Protective Services punish me somehow for my LO’s act of leaving home? Okay, one more: Do any of you lock your LO in your home?

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I do keep the doors locked and give a key to guests/care givers, and they know to do the same. We have our doors with locks on the inside, and we have an alarm system that tells when a window is opened. He has tried to leave several times through doors or windows, so there is no other choice. I do not lock him in alone. If I need to take the garbage out or check the mail, I wait until he is asleep or when someone else here. It is sad and hard, especially when he tries to open the door when he is calm. One day he told our pastor that he is in "jail," and I added that we are both on "house arrest." But, all kidding aside, I am the one solely responsible for his safety, and if I want us to stay together at home, this is one of the solutions to make it happen. This has been a huge help to have the doors locked and all keys hidden and/or accounted for. I also make sure I have a key on me 24/7 - especially if I do run out for a few minutes to get something out of the car, mail, etc., because he has locked me out one time (that was a quick lesson to learn and not repeat). It is sad and just another level of the endless heart shattering that follows the trajectory of the disease, but a necessary element to stay at home.
Treasuring the moments and grateful for others that understand..
Jan

REPLY
2 replies
bonnie48 | @bonnie48 | Mar 30 4:26pm
In reply to @teacher502 "I do keep the doors locked and give a key to guests/care givers, and they know..." + (show)
@teacher502

I do keep the doors locked and give a key to guests/care givers, and they know to do the same. We have our doors with locks on the inside, and we have an alarm system that tells when a window is opened. He has tried to leave several times through doors or windows, so there is no other choice. I do not lock him in alone. If I need to take the garbage out or check the mail, I wait until he is asleep or when someone else here. It is sad and hard, especially when he tries to open the door when he is calm. One day he told our pastor that he is in "jail," and I added that we are both on "house arrest." But, all kidding aside, I am the one solely responsible for his safety, and if I want us to stay together at home, this is one of the solutions to make it happen. This has been a huge help to have the doors locked and all keys hidden and/or accounted for. I also make sure I have a key on me 24/7 - especially if I do run out for a few minutes to get something out of the car, mail, etc., because he has locked me out one time (that was a quick lesson to learn and not repeat). It is sad and just another level of the endless heart shattering that follows the trajectory of the disease, but a necessary element to stay at home.
Treasuring the moments and grateful for others that understand..
Jan

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Thanks so very much, Jan. I’m sorry to hear that you are going through something similar to my situation. I wish you well on this terrible journey of ours.

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1 reply
teacher502 | @teacher502 | Mar 30 7:02pm
In reply to @bonnie48 "Thanks so very much, Jan. I’m sorry to hear that you are going through something similar..." + (show)
@bonnie48

Thanks so very much, Jan. I’m sorry to hear that you are going through something similar to my situation. I wish you well on this terrible journey of ours.

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Same to you my unseen friend. I am finding out that inner strength is something I thought I understood - until the LBD diagnosis. Now it is a well that sometimes runs very close to empty. However, love is the greatest strength and it overpowers LBD, so even during the seemingly impossible moments, I remind myself of the superpower of love that only comes from faith. God bless you and when things are really, REALLY tough - remember that you can do this and please keep posting. There is so much all of us can learn from each other to make this journey possible.
Jan

REPLY
raebaby | @raebaby | Mar 31 11:57am
In reply to @teacher502 "I do keep the doors locked and give a key to guests/care givers, and they know..." + (show)
@teacher502

I do keep the doors locked and give a key to guests/care givers, and they know to do the same. We have our doors with locks on the inside, and we have an alarm system that tells when a window is opened. He has tried to leave several times through doors or windows, so there is no other choice. I do not lock him in alone. If I need to take the garbage out or check the mail, I wait until he is asleep or when someone else here. It is sad and hard, especially when he tries to open the door when he is calm. One day he told our pastor that he is in "jail," and I added that we are both on "house arrest." But, all kidding aside, I am the one solely responsible for his safety, and if I want us to stay together at home, this is one of the solutions to make it happen. This has been a huge help to have the doors locked and all keys hidden and/or accounted for. I also make sure I have a key on me 24/7 - especially if I do run out for a few minutes to get something out of the car, mail, etc., because he has locked me out one time (that was a quick lesson to learn and not repeat). It is sad and just another level of the endless heart shattering that follows the trajectory of the disease, but a necessary element to stay at home.
Treasuring the moments and grateful for others that understand..
Jan

Jump to this post

I may have posted this before. When my husband with Parkinson's started sundowning around 78yo, I started giving him 10 mg of melatonin at 4 pm and another 10 mg at 9 pm. He only sun downed one more time after that because my son forgot to give him his first dose until 6 pm.

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1 reply
maryvc | @maryvc | Mar 31 6:32pm

I am so sorry to hear all this but also get it.
We are not at the point of my worrying about him getting out or a problem if he goes for a walk in the neighborhood, but safety st home is an issue. I just purchased two indoor Ring cameras so we can communicate when I go out.
Anyone else using cameras ? Do they help?
Bless you.

REPLY
nathandavid | @nathandavid | Apr 4 5:51pm

I feel same way with my partner of 28 years but I’ve accepted it. I’m pretty independent and understand some people get wrapped in their responsibilities and don’t need human touch as before. I get a lot of wonderful touching and hugging from my 2 small dogs.

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judimahoney | @judimahoney | Apr 4 7:05pm

Yup, a lot of my hugs, etc. come from our dog.

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porfe81 | @porfe81 | Apr 6 7:21pm

Today, I finally got my wife out for a walk, since she much prefers to stay inside, and I was hoping for rest together awhile on a bench in the park, just to share the moment. Not to be though, as she wanted to get right back home. I took her back, and went out again by myself. Thanks for the posts people, they help to feel less alone.

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1 reply
boppi | @boppi | Apr 7 7:04am
In reply to @raebaby "I may have posted this before. When my husband with Parkinson's started sundowning around 78yo, I..." + (show)
@raebaby

I may have posted this before. When my husband with Parkinson's started sundowning around 78yo, I started giving him 10 mg of melatonin at 4 pm and another 10 mg at 9 pm. He only sun downed one more time after that because my son forgot to give him his first dose until 6 pm.

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Interesting because Melatonin never helped us. I must take a capsule of liquid Valerian herb I get from Gaia (at Whole Foods or online) to aid me sleeping from anxiety. I gave it to my husband about an hour before bedtime and he sleeps like a baby. I think it would help with sundowners but not sure.

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