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My 83 year old spouse has been diagnosed with dementia for a year now although he has been progressively going downhill for 4 yrs. He has lost all zest for life, not interested in gardening or travel which he loved previously. In the last 6 months he sleeps all night and until 4 or 5 in the afternoon. The doctor says let him sleep. But is this just a normal progression of the disease? And how do I handle the loneliness?

It must be “normal” if there can be such a description of someone with dementia. We get a lot of questions here from people who say their loved ones are nearly catatonic. My mother was often asleep when I’d come to visit. And as her dementia progresses, she’d climb into bed and ask me to leave so she could sleep.

I’m sure if it could be helped, his doctor would prescribe meds for him. I wonder if he’s depressed by what’s happening to him? If he’s in a deep sleep and you woke him up, he would have a hard time with it.

How do you deal? Unfortunately for us, we’re from the eras when wives had no lives independent of their husbands. We relied on them for entertainment and companionship. When they’re incapacitated, so are we. My husband is bedridden and its almost impossible to get him up and out, so sadly, we don’t try. I’m on my own for all holidays and get-together. I go alone. I call myself a “pseudo-widow”. It’s difficult now with my grands in school and one moving 45 minutes away soon, but I’ve devoted myself to them. If your husband is ok alone for a while, try volunteering for an organization meaningful to you. Getting out and among people is the biggest help.
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I have had the same problem but I decided to get him out of bed at least once or twice during the day. He doesn't fight me on this but when he gets up, he wants to go back to bed in 15 mins. I try to distract him by turning on the TV music channel and I can get him to stay up at least one hour. As far as the loneliness, I read a lot, watch TV and turn on my computer and when I get bored with all of that, I clean house or bake. And now my new pastime, is researching older people on the internet who are challenging themselves in exercise, volunteering, traveling at a site called "Growing Bolder", which give inspirational stories of seniors who are living life to the fullest well into their 90's and 100's. Just researching the lives of these seniors, gives me hope for the future. Hang in there.
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Sunshine51 Sep 7, 2018
Thank you for the great ideas. I appreciate so much your response.
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doctors will give out psychotropics like candy..but remember drugs have side effects including increased risk for falling and confusion. Have you tried an exercise program? I take my mom for walks daily. It's really the only time she "comes alive" because I been doing it daily for 4 years. Her Alzheimer's is so bad she needs a specialized walker that cost me $659 to keep her back straight. She can walk nearly a half mile with it. It's unreal. Did not happen overnight. when I first started she could only go a few feet. It took about 2 years to get her to tolerate a quarter of a mile. now she can go further. Rest of the day she's like a slug. but it was worth every cent. BUT if I did not walk her she would have been totally bedridden or dead years ago. Remember the more inactive they are, the worse mobility issues become. Keep them moving! YES it is a pain taking her to the park -- but overall it makes her care easier because I can still walk her to the toilet (with assistance) and she will brush her teeth, floss and even use a water pic (amazing she can do that since her Alzheimer's is severe). so I never had the need to use psychotropics or narcotics due to exercise. when I walk her she totally changes like comes alive. when back at home she reverts back.
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YsLadyMN Sep 10, 2018
I agree with the walking, but I am SO conflicted with the idea of trying to extend life with exercise. Honestly, I wish my mother would pass away... she is not happy, and she is taking my dad down this horrible dark path with her. I'm not at all sure he will 'chose to live' and be happy again without her, but there is no way he's going to be happy going through this for years more with her either. I do agree with keeping her 'able bodied' enough to safely get to the toilet and move around without being so weak and lacking of balance that it becomes a series of falls and broken bones, more misery to pile on the existing misery. So hard.
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This is a normal progression.
Towards the end of my Husbands life he was sleeping probably 20 to 23 hours a day.
Do you have Hospice in to help you? They were a great help to me. The CNA that came 3 times a week helped me shower him, the last week she did bed baths. I got the supplies and equipment I needed. Also with Hospice you can get a volunteer that will come in so you can get out or you can sit and talk to the volunteer so you can get some socialization.
Do you belong to a support group? They can be very helpful.
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Reply to Grandma1954
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If I'm lucky my mother(92) will sleep. She just went through 2 days of not sleeping and becoming more confused and agitated with each hour. She was talking non-stop with imaginary people in the bedroom. When I went into the bedroom she didn't acknowledge me, she only wanted to talk to the other people. She started arguing with them because they weren't answering her. About half the time she talks gibberish and  otherwise talks about things that have no basis in reality; things she's done or places she's been that aren't true. When she sleeps she is a different person. Not great, but at least she recognizes I am there. She is also deaf and hasn't recognized me as her son for over 4 years. She has been sleeping for the past 12 hours. I hope she is better when she wakes up. I would like to know how long she can live like this. It is a cruel way to end one's life. I wouldn't want it for myself.
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Lostinthemix Sep 7, 2018
Yes, horrible way to go.
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If I get dementia, please let me sleep in peace. It is a good way to pass the time when I am no longer able to do my favorite things or read or understand TV. I don't want to smile or eat to make your day. Go get a hobby and let me sleep my life away. Amen
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Sunshine51 Sep 7, 2018
Thank you for putting my thoughts into words. I have thought that many times but keep thinking I "should" be making his life more but maybe sleep is what makes him peaceful. Thank you
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I read about people who have dementia sleeping a lot, but, I'm not sure if it's normal progression or depression. Sleep disorders are also quite common with dementia. Does his doctor treat a lot of people with dementia? Has he seen a geriatric psychiatrist?

I know that when my LO was first diagnosed with dementia at age 62, she was sleeping most all day and night. She was evaluated and treated for anxiety and depression. She cried a lot when she was awake. The daily meds really helped a lot and she started staying awake all day. Her depression left and her anxiety was greatly reduced. She has had a few good years of being able to get around in her wheelchair, engage in activities, enjoy visits, etc. since that time, so, I'm glad we treated her. Now she takes a short nap in the afternoon. I'd discuss it with his doctor and explore options.
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Madtoe Sep 7, 2018
My late mom did the same thing started when she was in late 70s or early 80s. My late dad used to be upset with my mom's sleeping habits. However, my dad did the same thing when he was 88. It was ironic that he got upset with himself because he used to take 30 mins naps and he said "I am acting like Mom now!". Then, each of them got the lost track of time when they slept 14 to 19 hours a day. Both of them got confused after they woke up. Actually, with Dad, we didn’t know that he was dying at 90 from advanced lungs cancer because he used to smoke every day. Mom had dementia.
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This is common as the disease progresses. I have seen over 36 hours in bed at a stretch with pit stops. I think that it may be an unconscious escape mechanism from what daily life has become--boring. I wonder if dreams aren't emotional substitutes for the cognitive difficulties presented by daily life. My question is, why would you want him to stay awake?
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MaryKathleen Sep 7, 2018
I agree with you. I don't understand why people want them to keep awake. I feel like I am a weird person or something. My hubby is sitting more and more just watching TV. I don't know if he is absorbing what he is seeing or not. But, if he is comfortable, why would I want to extend his confusion, and sadness? What is the purpose? He will never be "normal" again, why would I keep trying to get him to do normal things?
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My Mother was taking risperdone and namenda and she slept all the time. All day. I had to wake her for meals, She had a good appetite. Then she was awake most the night. I felt she was safe when she was sleeping. She had LBD. It is horrible to see your Mother like that. All you can do is try to make it as ok as you can for her and keep her safe.
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Reply to Isabelsdaughter
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My husband w 12 yrs of alz that we know of, sleeps 14 +hrs too. Like you Dr said what's wrong with sleep. He may get up at 8 or 10 & I give him breakfast & he goes back to bed. He is quite alert when awake & I give him his dot to dot or puzzles (100 pc or less]. If they like it let him sleep. They have fewer & fewer joys in life. If it was me I wouldn't want his choices but my choices if I wanted to sleep. I have a caregiver come in when I want to go & do something. He may be asleep the whole time but never alone. Just love them & constantly tell them, you are safe & someone will always be with you. Think of 5 yr old wakes & no one home. Scared to death. That's
Why never alone. You can do it. Get in a support group that shares their lives you can relate to. We're all in the same boat or have been. Read, read &read about alz so you will be prepared. Creating Moments of Joy, bk, online Teepa Snow, Understanding the Dementia Experience. We are here to hear you. God Bless
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