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.
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.
Sorry, I didn't mean to imply that you mom is dying - that may not be so at all.
But I agree with the pressure sore watch (and there is a fabulous product for seat cushions, in Wondergel - not medical, but a gel, with air breathing - really good, but only good for sitting, not lying down. And agree of course with daughter on duty, in that a routine for hygiene and care are essential. But also it matters to be there, to respond to moments of conversation, or have an idea for a relevant project that fits, or just a routine of coming in at a certain time every day, and chatting. Best wishes to you both!
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.
If ur mom is still mobile and isn't aggravated to do simple steps for herself it is wise to keep them active helps with strength and blood flow throughout the body which helps stimulate good oxygen to the brain even n inhome pt can help does Wonders for our mom and bless those who take cases of their moms and mother inlaws
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!
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.
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!
My mom has not wanted to get out of bed the last couple of days. I'm worried this is the start of her staying in bed all the time. She complains of back aches and leg aches and when we do get her up she can barely walk. I'm also worried about the incontinence. If she won't get up, how am I supposed to keep her clean and dry? She is cranky so won't do as I ask.
You don't say your mom's age or medical condition, but I know from experience that the more medical issues one has it seems like the greater the need to sleep is, especially if the person is aged. My dad naps a lot during the day, he's 81 and has a lot of pain and a heart condition. If your mom sleeps a lot, just make sure she is comfortable, dry, encourage her to, or you turn her so she doesn't get skin break down. Encourage her to sit up in between naps and if she is able encourage her to walk to the bathroom, dining room etc. Each situation is different, as is our individual responses to our aging parents/loved ones. It's like the doctor complaining about the diet of an elderly/sick patient. A great dietitian taught me long ago, 'let them eat what they want', if they will only eat peanut butter, give it to them, if they only nibble, give them what they will eat for eating something is better than eating nothing'. You mom may feel tired or unwell, it could be from medical issues but could also be a side effect from some of her medications. You can ask the pharmacist about the side effects of her meds. You can encourage your mom to participate in activities she enjoys even is it's just looking at photos, drinking a cup of coffee or reminiscing. If she wants to sleep, I say let her.
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.
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.
Try to get water and fluids in her. Lying horizontally for a long time will damage kidneys, but at this late stage keeping her comfortable pain free is best. My prayers are with you.
Once again, I would recommend a Home Health Physical Therapy evaluation. Perhaps they can help with her back and leg pain as well as work with her to get her out of bed more and up walking. A lot of times a family member will respond better to professionals than they do their own family.
The story about blessing reminded me of the time during my husband's last week in the hospital that they let us bring in a ten-year old grandson. He prayed for his grandson and blessed him. That was almost ten years ago and I will never forget it. This grandson is now doing well in college and plays with a church praise band.
Mom was like that over the last six months of her life. Slept all the time. Maybe she'd be awake 8 hours tops during the day. A pressure sore bloomed on her butt for a while, and a visiting nurse showed me how to treat it.
A couple of things that no doubt contributed to this. She was diagnosed with Alzheimers in April, and she'd said for years that it was her biggest fear of 'em all. Never mind centipedes and snakes, Alzheimer was what scared her the most. She was also bipolar, and it really flared up as her cognition started going south.
What did I do? Let her sleep. Wake her up for the meal she wasn't going to eat, wake her up for outings and Depends changes. Read to her, awake or not. Watch TV with her. Go through her stretching/range of motion exercises. Talk. Just generally hang out. But mostly let her sleep. Pretty much all I could do, I think. Just keep her comfortable.
My Mother has been this way for the last 6 months. But I am learning like you all to let her eat what ever she wants. She is 94. I try to keep her warm and clean. I also fix her hair and do the lotions for her back and legs. Her skin is so dry. Out of each day she is up maybe 4 to 5 hours on a good day. She is so tired and weak. We try to take her for rides, but she gets so tired. She wants to go to church on Sunday for the morning service then eat lunch and go back to bed for the day. She is in a wheelchair and we stay in the back of the church now. I never know when she might start talking loud when they are praying or preaching. After reading all of the other posts I don't feel so alone in this journey with her toward Heaven. One day at a time. Thank you all so much for sharing!
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.
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 have to agree with Carol. My 87 year-old mother not only has dementia, but Congestive Heart Failure and COPD in addition. Therefore, speaking as an experienced Occupational Therapy Assistant, I would not push her to do activities like I would, say, a 65 year-old with early onset Alzheimer's or dementia without any other serious medical conditions. Everyone is different, every day is different, and there really is no right or wrong answer because, what's right for you and your loved one might not be what's right for someone else.
I lost my mom at 85 Jan. 5th and the last year she wanted to sleep so much. I would try everything to keep her up when I could, hoping she would sleep at night. Nothing really worked. She would tell me her arthritis hurt so bad that some day I would understand and also understand why she needs the pain meds. If I had to do it over I would allow her to sleep. Around 2/1/15 my elbow and arms were killing me. A pain i had never had. My doc says I'm getting older and just have arthritis. Hum, if my mom felt this way all over her body, I know why she wanted to rest. Hindsight is alway 20/20.
My husband is 82, in relative good health, but has slowed significantly in walking and exercising. Due to the winter weather he has not wanted to go out, even to walk around the block or go to the gym [previously went 3x/week] . He has been retreating to his bed and sleeps more and more of the time. Staying in the house so much, he comes to the kitchen every hour or so for "food" and then goes back to bed, has been putting on weight. When he does go out to a restaurant for lunch or to a family occasion, he is much more animated and seems happier, even engages people in conversation. I think it's worth it to try to get him out for a breath of fresh air.
Yes, my mom seems to perk up a bit when we take her out, whether to a restaurant, a drive, or even for a walk when the weather is nice enough (which it hasn't been lately since we live in Ohio). We did take her out to eat on Sunday and she seemed to enjoy getting out even though it was so cold!
It seems like lately every time I read a post on this site, it pertains directly to me. My mom (91 with Alztheimers and dementia) has recently wanted to sleep most of the day. My gut instinct was to let her sleep, so it was nice to read your post. Thank you.
I feel that it's important to keep active both body and mind, however if I were aged and have more ailments and/or dementia; I'd say let me sleep, or stare at the wall or tv or pace the floor. There's no need to cause agitation, I can imagine that being much older and ill would be tiring. All we can do is to encourage a time to sit up and move around no matter how little, feed our loved ones their favorite foods no matter what it may be for we know they won't be with us forever. Most of all love them.
If it is a case of sleeping during the day AND at night, make sure medications are not to blame - some are more poorly metabolized as people age and may need dose reductions, or some are surprisingly sedating as a unique individual side effect. If that's not it, it is more than OK to let them sleep. It is not a good sign for longevity when that happens, but there is no real fix for it if just some novel or interesting activity does not perk them up.
On the other hand, if they have day and night reversed, you want to intervene to break the cycle though; ask a health care provider how to do that exactly. We often just recruit people to help tired out caregivers who have been up all night to keep them busy all day, then they will usually sleep the next night, and adjust meds. Some will go through a phase of sleeping well every other night - just don't fall into the trap of letting them nap all day if they do or you are right back to square one.
You better cherish your parents while you have them, because they will be gone someday. I took care of my grandmom for 35 years day and night. I went to school and went to work and in her last two years it was difficult. At first she was sleeping a lot, but then she could not sleep and would sleep all day long and then she would not be able to sleep and did not like to drink water or could not drink it for some reason. That is when trouble started because that is when started hallucinating. That became a cycle like a neurologist agreed with me. Once they start hallucinating and seeing things then they are not able to sleep. She used to complain that she saw dogs coming at her or rivers getting close to her. It got bad. She was diagnosed by a hematologist with vascular dementia because she had " plaques " in both carotid arteries, but in general she had been stable. She could have still lived because we all hallucinate one time or another. The biggest problem came when she was transferred into a nursing home in the Bronx, New York that brags they are the best. She only lasted there less than two weeks. They killed my grandmom there, those killers. Everyone talks about how nice nursing homes are in this country. Hhahahaha big fools they are if they believe that. Dont take their word for it because you will learn the hard way. Like insurance companies here nursing homes are a business to make money. In a nursing home the more patients they have the more money they collect from their insurance companies. It just shows you how one devil eats from another. Nursing homes end up hiring only a few people to save money, because the more people they hire the more they have to use from the money they collect from the insurance companies. Nursing homes are evil in this country. I lost the most wonderful person in my life in these places which everyone talks as being so nice. Bunch of hypocrites. Wait till they put their parents there. My grandmom was ignored. She was not cleaned. I had to clean her with my family. They did not give her medicines. They let her get sick and never called 911 UNTIL AFTER she died. These places discriminate. If the person is old they just leave them there. Just shows you what kind of places they are by the fact that they dont even feed them properly or even give them water. You are a fool if you believe that these places will help you. Unless you have a big family who can help you take care of your parents or hire someone to come and help you take care of them IN YOUR HOUSE do not leave them at the mercy of these animals, they are mostly foreigners from the Phillipines or Jamaica, working there because they do not give a crap about the patients in those places. Do it and you will regret it. I have posted comments here before about these places and guess what, someone deletes them. This is the system in this country. They dont want the people to know the truth. Talk about a free country, you are right !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Terryjack. your response is great. I let him sleep when he wants to and I do whatever I need to or want to while he sleeps. In truth, it is good for me because I do not feel any stress while he is sleeping. When he is awake I prepare a meal or snack for him. He likes that We need to accept that everyone is different.. patient or caregiver. I have accepted that "Whatever will be will be"
Regarding nursing homes, My 89 year old neighbor was put in a luxurious nursing home. Beautiful place. We were visiting her when she rang for the nurse for help. No one showed up. After a half hour I went to the nursing station.. they were all sitting around talking. I asked if they realized the help lights were lit all up and down the hall. I was told they will get to them. I asked how they did not know if someone had a real emergency. a fall, chocking, etc. Got a shrug. Those places stink. No matter how much you pay, you get little in return.
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.
But I agree with the pressure sore watch (and there is a fabulous product for seat cushions, in Wondergel - not medical, but a gel, with air breathing - really good, but only good for sitting, not lying down. And agree of course with daughter on duty, in that a routine for hygiene and care are essential. But also it matters to be there, to respond to moments of conversation, or have an idea for a relevant project that fits, or just a routine of coming in at a certain time every day, and chatting. Best wishes to you both!
Wonders for our mom and bless those who take cases of their moms and mother inlaws
A couple of things that no doubt contributed to this. She was diagnosed with Alzheimers in April, and she'd said for years that it was her biggest fear of 'em all. Never mind centipedes and snakes, Alzheimer was what scared her the most. She was also bipolar, and it really flared up as her cognition started going south.
What did I do? Let her sleep. Wake her up for the meal she wasn't going to eat, wake her up for outings and Depends changes. Read to her, awake or not. Watch TV with her. Go through her stretching/range of motion exercises. Talk. Just generally hang out. But mostly let her sleep. Pretty much all I could do, I think. Just keep her comfortable.
Carol
On the other hand, if they have day and night reversed, you want to intervene to break the cycle though; ask a health care provider how to do that exactly. We often just recruit people to help tired out caregivers who have been up all night to keep them busy all day, then they will usually sleep the next night, and adjust meds. Some will go through a phase of sleeping well every other night - just don't fall into the trap of letting them nap all day if they do or you are right back to square one.