I find I cannot talk to my husband or sit with him. He is bedbound and does not speak. Any advice?

I just went through this. Lost my husband five days ago. All you can do is "be there". Hold his hand. Rub his arms. Stroke his face. The human touch at this stage is better than words! If you talk to him, tell him he's still your guy forever and tell him how handsome you think he is.....and you'll always love him. Keep it simple.

Dear Activewife,
I just saw your post and wanted to share.
I have a similar situation. My husband with Alzheimer’s is confined to a bed and a recliner all day at home with me. His ability to speak is limited to an occasional yes/no or utterance that I usually cannot make out. Mostly, he is silent but communicates with his eyes or body gestures. It has been a long arduous journey of hardship for us both and one of self-discovery for me. I can only share my experience and how I am pulling through, especially in this era of COVID isolation.
 
First, you are wise to keep as active a lifestyle as you are able, especially given the limitations we all face with the COVID lockdown. You are still you and getting out and doing things you enjoy is good for the soul. I too went out saw friends and visited museums, public gardens, etc. before COVID. Now I find peace in gardening.
 
Like you, it felt awkward to share my outside experiences with my husband. But then I remembered that we always did some things separately and some things together. The things we did apart, we shared with each other. That is no different now. Your husband will likely take interest in your sharing now as he did before. I tell my husband about my days and the news from the family, friends and neighbors just as before.
 
Since your husband has limited mobility, is his day spent in the same room and separated from the rest of household activity? Can you move him during day hours to another room in the house where he can see you or others busy and active with normal house duties? I had to set up a hospital bed in the living room since my husband can no longer take the stairs. It is also the room with his recliner and a room where I pass through or spend time reading, folding laundry, watching TV. In that way, I don’t feel like I am purposely making a trip to “his room” to check on him or see if he needs anything. He too knows I am nearby but also doing normal household things. I don’t think he feels lonely as a result. 
 
I take time to sit quietly with him, no words spoken. Sometimes, I crawl in the bed with him before the aide comes in the morning to help get him freshened for the day and transferred to the recliner. I like to hold his hand and kiss it. I reminisce happy stories from our past just as I did when he was well. I say “ I was just remembering when……” These stories make me feel good too. I tell him how handsome he is and remind him of how well he has taken care of me and our children for all these years. I constantly tell him he has done a good job and deserves this time today to rest and relax. He will sometimes respond with a smile.
 
We eat our evening meals together, him in the recliner and me with a chair next to his, snack tables set up, and watch the evening game shows or reruns of classic sports games or one of his favorite movies. 
 
At times during the day, I read him short human-interest stories from magazines. The AARP has good upbeat selections and pictures to show. Or I read him from a book of famous short stories. I believe he enjoys the sound of my voice and often drifts off to a peaceful rest. He likes poetry. I enjoy the stories and poems too.
 
I play music for him during the early part of the day. In the afternoons I look for tv shows that interest him. Surprisingly, he enjoys cooking shows. For me as I go about my day, these are background sounds of a busy household, reminding me that we are here in the home together. 
 
It is hard and stressful to see your husband succumb to this disease. It changes you too. I often wish it away but it won’t go. I strive to do my best at what I can do, keep our relationship strong, and not be too hard on myself nor look for perfection.
 
I wish you peace and self-discovery in your journey. You may feel lonely but are not alone in what you are experiencing. Kudos to you for reaching out for support and ideas from others.

This is not unusual for people with dementia. My husband started to lose speech 6 yrs ago and gradually lost much of his speech over time. Now, he is quiet about 95% of the time. It is heart-breaking to witness a psychiatrist who used speech to treat patients now can only utter a YES or NO response, even though the question does not require a Y/N answer. I have learned to read his non-verbal cues and do the best I can to make him comfortable and well-cared for. Yes, I am lonely and I miss our conversations, but I would miss him more if he wasn’t alive.

I don’t have a sage advice. I just wanted you to know that you are not alone, and the best course of action is to accept that neither you or science can change this sad reality. We all learn to do the best that we can. I would not wish this disease on anyone including my enemies. My heart goes out to you.

How long has your husband been bed bound?

Throughout your marriage, have you always had different types and level of activity, different social groups and so on; or used you to do everything together?

I can see how you might feel as though you're rubbing salt in his wounds, chatting to him about your doings and conversations, but I shouldn't expect he feels like that about it. I see from your profile that he has heart disease: if he's dozing or sleeping most of the time, I would expect that your company is important to him mainly as a warm presence, at the moment at least. So you shouldn't feel you have to provide mental or social stimulation, just pop in every now and then so that he knows you're there, looking after him.

So what...
Be happy that you are not him...

He closes his eyes because he is tired or maybe his eyes are dry and they hurt or the light hurts his eyes.
You should visit with your husband even if it's just a few minutes several times a day.

It doesn't mattwr that he isn't talking as he's not able to talk any longer so whst. You want to punish him because he doesn't answer you?

People who no longer talk can still hear.

You should just go in and talk with him and give him updates.

Let him know that you love him and misses him.

Listen to music with him.

Watch TV with him.

Read to him.

Treat Him How You Would Want To Be Treated.

He won't always be around and once he's gone, you'll be glad you spent time with him.

My dear MIL couldn’t speak for the last 3 years of her life. I used to sit with her and talk to her, and I could see that she knew I was there. Sometimes I would read aloud to her, or read to myself if she seemed to be dozing off. Because she was in a NH, I couldn’t just drop in and out, but I could be with her for an hour or so. I changed my expectations away from an interchange, to just being company. And also to relax myself, because I was fairly busy and finding a peaceful hour was quite important for me. I hope that you can find a way to find this less frustrating for you, and I send you and your husband my good wishes.

I get the same thing from my husband. I HATE that blank look when I try to have a conversation with him 😢😢. Sometimes he initiates a conversation, but it’s usually a “Lewy” conversation that I have to try to figure out and respond appropriately to 😏
What I have found works best is music. 🎼🎸🎺. If I turn on some of his favorites, he often sings along and sometimes I can even get him to “dance”. I hold his hand and dance in place and he taps his feet. On a really good day, he’ll even stand with his walker and shuffle his feet around. I’m amazed that he can remember the words to the songs when he can’t remember the names of his children and grandchildren. He does enjoy looking at family pictures and I keep photo albums out and show him pictures on my iPad. Sometimes he surprises me by recognizing someone we haven’t seen for awhile and telling me something about them.
He also has some favorite movies to which he knows the dialog word for word. Watching those with him can be fun because he sometimes becomes more animated when reciting his favorite pieces of dialog.
Unfortunately, Lewy takes him away most of the time, but I treasure these moments and thank God every day for the good moments - and beg God every day for strength to endure the tough times. I pray that all of you who are in this with me will also find strength and peace.

My mother has dementia and Parkinsons and is wheelchair bound. I faced this challenge as well....how does one have a meaningful visit? I found that it was helpful to plan to visit at her mealtime. She can still chew and swallow pretty well, but cannot use utensils so I would spoon feed her. It's a way to bond, and it helps out the staff at the facility as well, that is one less patient they have to assist at meal time. A mother bonds with her newborn infant while feeding them, so this feels to me like I'm coming full-circle with her!

Is it because you cannot bear to be with him?

Your screen name is active wife, is it because you do not like to sit still?

Do you need companionship that he can no longer provide? Conversation, intimacy, friendship, and more?

A couple ideas, if you enjoy books, could you listen to an audio book with him? You could keep busy in the bedroom, ironing or folding laundry as you listen to a chapter a day.

If there is a TV in the room, can you watch a show together each day?

Are there old friends who would feel comfortable coming to visit and reminiscing with him?

Reading aloud to him is great. The sound of your voice and your presence are more important than the content, so you can read one of your books.
One of my dementia clients loved to look closely at a picture hanging in her living room of a busy Paris street. I'd take it off the wall and hold it on my lap. We'd point out the fancy dresses, and I would make up stories about the people. "Oh, they are all dressed up, they must be coming from church. Do you think they will have lunch together?". She might nod, or shake her head no, since she spoke very little. Or I'd point to a house and say it was my favorite, which was her favorite? She'd point to a house. That same painting provided hours of interactive closeness, without her speaking.
Maybe you could find a picture featuring something of interest to him. A ship, a busy office, a garden, a landscape from the countryside, a lake or beach.
Also very important is touch. Sit close enough that you are touching, hold his hand, give him a foot rub, lay your hand on his arm or leg. Be there.
These are very hard times in his disease to deal with. I wish you luck and peace as you proceed.