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.

crankyyankee | @crankyyankee | Jul 13 8:48am
In reply to @gloro "Sometimes, the glass is half empty; sometimes, it is half full. There is much to miss,..." + (show)
@gloro

Sometimes, the glass is half empty; sometimes, it is half full. There is much to miss, much to regret, and much to worry about when you are a caregiver, but up to the words 'when you are a caregiver' that pretty much covers much of a life. Sadness is inherent to the human experience. Aspects of my young life were truly awful. There is a litany of woes I could share but do not dwell on. Occasionally, they make a good story. Sometimes, in the telling of the pain, there is a good laugh. After all, I have earned the right to use them however I want. What I learned along the way was that not bouncing back only prolonged the misery. And more surprisingly, if good times do not last forever, neither do the bad times. It is all one Wheel of Fortune circle without a clue where we will land. -- In all this iffiness, when dementia comes along, somehow, we are caught short. If it happens late in life, it seems unfair because things are finally right. If it happens early in life, it seems unfair because there is so much more to do. More than ever now is the time to recall all those hard-earned lessons from the things you have survived. Fill the loneliness with effort that is useful. Find the spaces in your time and mind where there is peace and something lovely. Nurture a plant. Read a book ten pages at a time. Go outside and listen to birdsong. You will remember that you are still alive. The slow loss of someone you love is dreadful. The workload is insane. But here we are. Don't deny it. Isn't acceptance the first step towards any recovery? Then, try to make things better. What we do with it will tell us whether our glass is half empty or half full. GloRo

Jump to this post

Oh GloRo, I wish you lived next door! Your wisdom and clear-sightedness always right my ship, so to speak. Feeling sorry for ourselves is so counterproductive. My husband occasionally will say, very seriously, 'you're keeping me alive' , and I always answer 'yes I am' and that's the reminder to me that this isn't a job, it's a promise I've made to myself: to clear the nails from the road ahead with humor and compassion. Thanks for your pep talks!

REPLY
silverwolf66 | @silverwolf66 | Jul 13 9:03am

I know that feeling, too. It is difficult to reconcile the person he is, now, with the person he was. How long has he been affected?

REPLY
1 reply
judimahoney | @judimahoney | Jul 13 10:56am
In reply to @silverwolf66 "I know that feeling, too. It is difficult to reconcile the person he is, now, with..." + (show)
@silverwolf66

I know that feeling, too. It is difficult to reconcile the person he is, now, with the person he was. How long has he been affected?

Jump to this post

One year now.

REPLY
1 reply
silverwolf66 | @silverwolf66 | Jul 13 1:56pm
In reply to @judimahoney "One year now." + (show)
@judimahoney

One year now.

Jump to this post

My husband was diagnosed in 1999. He also has a traumatic brain injury & spine trauma from a car accident. There are days when he sleeps 24 hr. That gets lonely. We recently moved into an apartment & are meeting new folks. That combined with hobbies keep me busy so that the loneliness isn’t as bad. It doesn’t replace those special moments… I’m seeing a therapist to help me adjust; it does help.

REPLY
boppi | @boppi | Jul 14 8:59am

I think we should one day have a weekend retreat so we can all meet each other in person and I can give you all a long hug and thank you for saving my mind of emotions since I found this website! And Gloro, you are my heroine, I wish I lived next door too! God Bless us all!!!

REPLY
yinyin | @yinyin | Jul 14 10:14am

I really am so grateful for this group. It seems to me that one of the things we caregivers deal with is loneliness. I’m 73, as is my hubby who was recently diagnosed with MCI. I long for adult conversation. Not circular arguments and total misunderstandings. Just good old conversation. I find myself getting quite depressed.
So, I make things for charity. I’ve sewn dog beds, knitted cat beds and dog jerseys. Not that I’m very good mind. I’ve just hooked up with my local fire station and they are happy to take soft toys which I intend to make. Dual purpose I’m using up all my scraps. My closets are now almost tidy. I guess I’m trying to say that you have to find some time “away” to be able to deal.

REPLY
billiekip | @billiekip | Jul 18 1:22pm
In reply to @trishaanderson "Does your husband still know who you are? My husband is at the point he doesn’t..." + (show)
@trishaanderson

Does your husband still know who you are? My husband is at the point he doesn’t know who I am a lot of the time. Especially during the night even asking me to leave and go home, he even offers me money to leave. Breaks my heart!
Occasionally my husband still calls me by my name and it makes my day.
Maybe your husband isn’t sure who you are, so it makes him uncomfortable to be affectionate.
With this awful disease we lose them twice! When they no longer know who we are and when they pass away.

Jump to this post

Not knowing a spouse is typical of ALZ sadly. My husband has 27..yes, 27 photo albums of our lives with all pictures labeled. He even made a special piece of furniture to hold them. I thought looking at the albums might trigger some memories for him. He recognized himself, but asked me, "What are you doing there? How funny you are in the same pictures with me." That wasn't the response I had hoped for. He is comfortable with my being with him, but really has no idea of our relationship. I'm a friendly caretaker, housekeeper and nothing more.

REPLY
jeffsmock | @jeffsmock | Jul 24 12:22pm
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.

Jump to this post

I danced with my wife more in her last two months then all the other years combined.
It called the gaits walts. Thankful for that. God I miss her.
It will be a year in a few days.

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 31 8:07pm
In reply to @jeffsmock "I danced with my wife more in her last two months then all the other years..." + (show)
@jeffsmock

I danced with my wife more in her last two months then all the other years combined.
It called the gaits walts. Thankful for that. God I miss her.
It will be a year in a few days.

Jump to this post

Jeff, that is a lovely, if sometimes painful, memory. I love the phrase Gait Waltz. Did you dance to a particular kind of music?

REPLY
1 reply
jeffsmock | @jeffsmock | Jul 31 8:16pm
In reply to @colleenyoung "Jeff, that is a lovely, if sometimes painful, memory. I love the phrase Gait Waltz. Did..." + (show)
@colleenyoung

Jeff, that is a lovely, if sometimes painful, memory. I love the phrase Gait Waltz. Did you dance to a particular kind of music?

Jump to this post

Usually didn't have music. The reason I called it the gait walts is because I had gait belt on her so when we changed positions that was our dance. That was our couple times or intimate time.

REPLY
View MoreView Less
Please sign in or register to post a reply.