My Mom sleeps most of the time with little activity. Is keeping her comfortable my best service to her?

I think that there's a difference when age is a concern because many elders are physically frail and have issues other than dementia. When someone has younger onset dementia, keeping active (when possible) is probably good. When someone - dementia or not - is 85 and has a lot of pain and other issues, my personal thought is offer alternatives but if they want to sleep, why not? Everyone is different. We do our best, try one thing and then another. In the end, I'm not sure what's right or wrong because every day is different. Lots of wisdom here from all of you!
Carol

I'm not sure (not that anyone can be completely sure - we are frail humans trying to figure out and make time for what is best in the way of care for the vulnerable who sometimes don't speak in ways that seem to make sense). I've struggled with such questions when my pets were ill with death coming. Best thing I can think of, is make some time and a schedule, that you are able to do, to be with her, in the room, for maybe half hour or 45 min at a time. You might sit on the bed and read, or sew, have a nap. Allow her to sleep but be close by. I think it is sad to wait for the fragile to ask for what they need - part of what we/they need, is the comfort of predictability in some basic routine and schedule, and the experience that even if we cannot talk, we want to know we are loved and valued. I have found as caregiver, even for dying pets - the conflicts of interest of where to spend energy, are exhausting in themselves. You make time to pay attention, only to find it wasted, as the opposite symptom returns, or you feel hope, only to find that after 2-3 days, it's back to deterioration again. You worry about the many life needs that are going unaddressed during this period, or may even worry about how to have enough money to last through care.

On the other hand, there are moments which bring back such reward of love still shared. I like to think I am someone who made the time, and worked to sit close, maybe read aloud, or do something gentle, so that I played the role which I believe in doing, and after they passed, I slept better for making some deliberate time. It's not necessary to do too much, or respond to every whim - only necessary to be kind and make some time to be present and show care - maybe 2-3 half hour periods in a day, and follow SOME routine, so they can rely on that.

My Dad is the same way. All last week he slept a lot, I thought it was the end. Then Friday afternoon he woke up and has been,wandering, whisteling, talking up a storm but it's mostly gibberish. He drove me nuts this w/e. I spent time with him, trying to calm him down. Trying not to feel guilty about wanting my life back. So, I really feel for all of you, knowing we are a group of loving, caring ,givers. I'm not a Tyler and I don't even know if I can quote from books, but for those of you who need a spiritual boost, try to get hold hold of Henri Nouwens book " A Spirituality of Caregiving. It's a small book but the last page says it all. To paraphrase....how can we keep on going nursing the sick, consoling the dying, whn their deaths only cause us more grief. The answer is they all hold a blessing.. Caregiving is finally receiving Gods Blessing from those to whom we give care. It is a glimpse of the face of God. So this is what I'm aiming for. And when my Dad has a lucid moment im going to try to ask him for his blessing. Amen.

There are days when my mum sleeps virtually all the time. Her carers get her up in the morning, wash and dress her and transfer her from her bedroom to her lounge (which she still retains as 'her' space although we live in the same house. Some days she doesn't even stay awake long enough to eat her breakfast or take her medication, and we let her lie back on the sofa with her feet up, hot water bottles, and blankets until she wakes. I take the view that as she has dementia and is confused and upset for about 75% of her waking hours, whilst she's asleep we are doing her a service. But as pamstegma says, you need to be careful about pressure sores. If your mum's asleep in bed then you should get an air mattress for her because this will help, but she needs hot water bottles with such a mattress because these things are cold as the air that circulates within them is cold. Also, to ward off pressure sores you could use ProShield as a regular washing soap for her - this protects the integrity of skin that spends a lot of time compressed. What is interesting about the sleep pattern is that it's not really a pattern - some days my mum's wide awake, and if we take her out she can remain awake for a long time although the following day she may sleep for 18 hours. I think if you are keeping your mum comfortable you're doing as much as you can.

My mother was on hospice for 6 months. Your mother may not be I. The same condition that she was in, but your story sounds similar. for the last few years of her life, she stayed in her space--like you said. We got her up each morning and she stayed on her couch in her living room all day. Sat up only to eat. Could not walk without help and at night, we put her back in her bed. She did not want to interact with people much so we just took turns sitting with her and also had sitters with her to give us some time off. The last 6 months, she stayed in her hospital bed and slept most of the time. She was 97 years old. She suddenly stopped eating and died peacefully about 3 weeks ago. The nurses said we should just try to keep her comfortable and not try to keep her alive. I think that is good advice. Unless your mother's mind is fairly good and she is I. Good enough physical shape to regain her ability to walk and do things on her own, yes, you should just concentrate on keeping her comfortable.

That last paraphrase is very true and timely. I find that there are times I get so sad, and I realize that I am suffering from "anticipatory grief". Maybe it is not as strong as the waves that envelope you after a loved ones' passing, but it is grief nonetheless. Perhaps I am grieving over the fact that my mom doesn't remember who I am anymore, and our relationship has changed as a result in that she now only looks at me as if I am just another caregiver. Perhaps I am gearing up to face the inevitable, and that is that she is in essence dying. Maybe not today or tomorrow, but a little bit everyday. It is a slow, miserable process. Yet I am reminded that it is, after all, just a part of life. Hopefully our God is looking down on us and smiling, knowing that we are giving our loved ones just a glimpse of what is yet to come - the face of God shining brightly and smiling at them! I pray that you get your lucid moment with your dad to ask for his blessing, Garry. Thank you so much for your words of comfort, and God bless you!

Wow! Thank you everybody for all your kind words with your experience in giving care to your loved ones. It has truly touched my heart. Both my parents whom I gratefully care for 24/7 sleep most of the day with some intermissions for eating. One of the greatest comforts that I can give is the gift of patience and touch. Touching with my actions of kindness but also and sometimes more importantly with physical touch. Sometimes that involves simple conversation or joking around. Sometimes allowing myself to experience being uncomfortable while giving them comfort. One of their most appreciated simple enjoyments and one I am still learning how to enjoy is putting a rich cream on their dry skin feet and giving a short foot massage. Sometimes putting lotion on my mother or father's back and rubbing gently gives them such pleasure it is almost embarrassing. But in the end the joy that they received is reward enough for me. For me that is spiritual nourishment that comforts myself which empowers willingness to continue with the blessing of giving care to my parents. Sometimes are harder than others but touch can soothe inside and out.

My husband is 54 and has frontotemporal dementia. He sits around and naps a lot if I don't involve him in something. I, too, find myself sitting around a lot with him and becoming more unmotivated. The other day, I pushed myself to get him out of the house and take him to the basketball court near our home. We went for just a short while (30-45 minutes). It made all the difference in his demeanor. He became more alert and happy. It was like helping him to feel more alive. Today, he seemed disoriented, and tired. He just sat around I decided to try it again. We went to play basketball for just 30 minutes, and again, he became more alert and happy. He seems so much more aware, and talkative. I don't know the answer, but I do see the positive outcomes of getting him to be more physically active.

mom is 95 and has dementia. She usually gets up every morning and is quite eager for breakfast. But every now and then she just can't be satisfied with TV or a a ride in the car. Says she is very tired and wants to sleep, but will not stay in bed. If it is one of those days, she walks the halls and can't be talked into laying down till when she feels like it. I am usually asleep and have no idea when that will happen. However, when she finally sleeps, she often misses a day. I will make a breakfast and get her up. She doesn't want to get up but she will eat all her breakfast and then go back to bed. The next morning seems normal, she will get up and eat a good breakfast, and then be hungry all day and I give her food whenever she asks for it . Seems brighter those days. I just roll with whatever is happening. I've gone through the what ifs, but why? If she is calm and watches tv and eats well, is clean and warm, I go back to doing my work and just let it alone.

I have noticed this to be the case in my mother's situation as well. There are times when she seems to sleep all day, and other times when she is more alert and stays awake most of the day. I've thought perhaps she is sleeping more at times because of boredom, or perhaps she didn't sleep well the night before. I've heard that people tend to sleep most of the time just before they die, so then I wonder if she is getting ready to die. With all of the myriad of things I have to do throughout the day, I must admit sometimes I am content just to let her sleep. However, I agree there are times when I think that I should be doing more to keep her entertained. It really depends on the day, I think. Anyway, I put my mom to bed every night, but every night she ends up in the recliner where I find her every morning sleeping. Just recently since she was sitting on her tailbone so much she started to develop a pressure sore on her bottom. Therefore, I ordered her a gel cushion with a cutout for her coccyx to relieve that pressure, and it seems to be working pretty well so far. Just an idea!