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

Why can you not speak to him or sit with him?

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?

If I tell him what I’ve been doing it highlights the fact that he is not doing anything, if I tell him about people I’ve spoken to it highlights the fact that he is seeing no one except his carers. Most of all it is the fact that when I do speak to him I get no response or look of understanding of what I’ve said. More often than not he closes his eyes and goes to sleep.

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.

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 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.

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.

My Mom had dementia, and she would sit and stare. I would sit with her, talk to her and hold her hand. Somehow I know she heard me. Every now and then she would squeeze my hand.

Read to him. Listen to audio books or music together. TV? I understand that talking about yourself and your activities may make you feel guilty. There are other things to do and talk about.

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.

A lot of the time all our loved ones need is our presence in the room. In the 5+ years since my mother moved in with me, she has spent most of her days in the common room. She reads, watches TV, listens to music, watches the kids and pets in the yard, helps in food prep (she can still dice apples faster than I can). After her fall in 2018, she isn't as mobile and needs to keep her feet up in the recliner in her room several hours a day so I moved my grand-nephews play table into her room so he can show grandma his lego and lincoln logs builds or his coloring projects. They both love it. I have found when my mother is somewhat anxious I can calm her by joining her in her room. Often I bring a snack to share or a glass of her favorite lemonade but I don't have to engage with Mom. I can work on my laptop or read a book or even lay down for a nap on her bed. She responds to and is comforted by my presence.

Does your husband have a favorite book? Perhaps you could read to him?

Besides his physical limitations, he might be suffering from depression. Has he seen a doctor for possible treatment?

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.

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.

My husband has Dementia and early Parkinson’s, he’s also going blind now. He also stays in bed so much now. He wears pull ups and at night I use a condom cath for him. He’s very weak because of not moving. You might try putting in an audio book or play his favorite music . It helps . My tv is never off Rick needs to hear either one of them at all times even through the night . If the tv goes off he will wake up asking what happened to it . My husband is weak and I’m so afraid of him falling . He went down once I had to call 911 to pick him up. I try making him sit on the sofa he falls asleep . He can answer me but says I don’t know , I have to pull every sentence out of him he doesn’t talk much either . He loves watching and listening to TV . I am soul caregiver for him . I rarely get out I know how very depressing seeing the person you love go through such terrible illnesses, We can only try and do our best love them , pray for them watch over and be their protectors now. But at the same time we can’t loose our selves either as I have done at times . With out friends and family around it’s even harder
im glad I found this site it’s good texting people that understand what a person who cares for a loved one goes through .
Prayers to all on this site keep your faith in Jesus , talk to him he’s always there to help. Don’t let Satin steal any love or joy away from the a Lord . God bless 🙏🙏🙏🙏🌺😆

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!

It's hard to know what his awareness is...maybe just hearing your voice is comforting to him on some level.  I wouldn't dismiss talking to him all together.  Maybe just having daily updates with him will be cathartic for you and comforting to him.  I know it's hard.  If it were me I would just hate the thought that I could be saying something to him and chose not to.  Even if you sit next to him while you read a book, I bet he knows you're there or that someone is there.
If it were you would you want someone still sitting with your or talking to you?  I think this has to be a personal choice for you.

Is your husband even aware of anything that's going on around him? Is it possible, unfortunately, that he is simply past the point of comprehending anything he sees or hears? As others (especially sister46) have suggested, touch might be the only sense that's still functional, if it still is. It's worth using touch and other stimulation to see what response you get (but keep using touch even if there is no obvious response). Can any kind of assessment be done to get a better idea of his capabilities or level of consciousness?

My mother was the same way. I would visit her in the NH and I would put tv on for her favorite soap opera. I would speak to her throughout my visit. I would sit close to her I would massage her hand, hold her hand, and/or massage her neck. Believe me a sick person may not verbally acknowledge you, but the person knows that you are there. One day as I was massaging my mother’s neck she (mumbled) told me that she loved me, and I told her that I loved her too. Those were her last words to me.

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.

My husband with FTD is in a similar situation at a local AL. The staff tells me that he checks his watch and looks for me to pull into the parking lot. They say he lights up when he sees me. If any of that is even slightly true, and I’m sure it is, my visits are more than worth it. I go every other day, sit with him (outside now) and catch him up on news. He doesn’t seem to pay attention or understand but I think he values that time. I frequently play a song or songs for him. Most make him cry but some make him laugh, and either way I know they’re reaching him emotionally. I apologize because I haven’t read all the other answers and this may have already been addressed, but I’m wondering, besides music, were there any foods your husband particularly liked and could eat? I made mine a pasta dish he enjoyed, took it to him, and watched him gobble it up with a little help. That doesn’t happen much anymore and it made my day. I’m sending best wishes to you during this challenging but still very loving and rewarding time.

I have found that if you engage in something other than plain conversation you can break the ice. We play a game we both like such as Scattergories and enjoy the competition. Sometimes the game show America Says is a great ice breaker. I do understand your issues because no matter what I do I get complaints.

You cannot change this so now you must ask yourself what effect is this going to have on you? Can you handle this or do you feel it would be better to place him somewhere safe. If you have caretakers, then let them do their thing and you should live your life to the fullest. I don't know what else to say. I doubt I could handle this for long but you decide what is best for you.

Imho, I am so sorry that your husband is bed bound and unable to speak. I give you superb credit for trying to engage him in listening because perhaps his brain is still able to receive that communication. That is good that you're able to get out by way of carers coming in. Prayers go out to you, Activewife.

I’m a member of the caregiver wives club. My husband is totally bed bound. He would likely be in a memory care or nursing home facility were I not his caregiver. He is verbal but I can’t understand him most of the time. His speech is impaired, and he sometimes slips into Polish, his native tongue.

I had his hospital bed placed in the center of our house, the den, because it is split level. We have a caregiver 4 hours a day to help out. I’m 80 years old so can’t do what I used to. Feeding him is a big part of the day. Sometimes we watch tv while I feed him. He likes Roy Rogers and sports. I sometimes remind him of things from our life that he may or may not remember.

I have to leave him downstairs when time for me to sleep. I turn music on for him during the night. Sometimes he needs a soft stuffed animal for comfort. He was a cancer researcher. I miss just being in bed with him. He still is able to tell me he loves me. We exchange those words every day. That goes a long way for me and gives him a lot of comfort to hear me say that. I find myself touching him, stroking him, kissing his forehead, multiple times a day. I am so grateful to still have him. We’ve been married 58 years last week. I try not to have any regrets now or later. I had to evolve to being at peace with seeing my husband transform into the state he is in now. It didn’t come naturally. It took learning to accept that old “for better or for worse” vow. I had to accept that this Is how things are now.

My sister lost her husband about 3 months ago to cancer. His mind was still working. They are/were strong in their faith. They spent a lot of their time reading scriptures. She sang hymns to him a lot, which he loved.

Covid has taken away my only real outlet, which was going out to lunch with a friend or family member.

Music- its a language where you do not need to say anything- just feel with your heart and soul. Music on you tube- they have therapeutic guided meditation to heal your body- if you have him do exercises in bed range of motion - prevention of drop foot- and contortion- rigidity- inspirational- care giving for someone who has made a choice to be angry- and yes especially men- do not understand. Medication helps - I had my dad on an anti depressant- it worked. there are wonderful audio books - they are inspirational off amazon- I lost my dad last Thursday- I cannot watch TV- its not helpful- and I really am concerned. What are his hobbies- if he could teach what he knows thru a devise that follows and types through voice command- dragon suddenly speaking- His life is not over- he just has to live it in a differently- inspire him by saying its a matter of attitude- your story can help someone live a better quality of life- ask him if he needs to be upset or angry you understand- my dad told me off before leaving to the hospital - he thought I did not want him- and its quite the opposite- but the words still wound me and I know he did not mean it- he just trusted me to deliver his feelings- he was .. tired. God bless you and all you do- there are mindfulness breathing exercises, go out side and take your shoes off and just get grounded- and breath- I blow bubbles- 53- and it works, I blow my troubles into the soapy too; and imaging its me problem floating away- it does not all work at first- but soon it will bring comfort- as we forget ourselves- worrying about our love one. be strong by staying string- take time to care for yourself.