How do you get sleep while caregiving?

I think you need help in the home to give you respite (for sleep or away time for yourself or shopping). Family assistance (siblings, children, nieces/nephews) might be the best option if they are close enough or willing to come (and so often they have no idea what you are living with until they see it for themselves). Or if family isn't available or willing, paid help if you can afford it. I would not rule out institutional transfer if there is no other alternative. You simple cannot kill yourself trying to do what requires more than you are able to do. Consider a hospice referral also. At age 95, everyone's prognosis is "six months or less" and she should qualify. While you are relatively young, everyone has their limit. Sleep deprivation is one form of torture. Don't be afraid to look for help.

@gratia

I am mortified at the idea that your very ill mother was turned away from a care center. I have to ask you if this was a memory care center? The idea that someone is too ill to be helped is outrageous.

Regarding your mom's nighttime urinary issue, I saw a commercial on TV for a Pure Wick. It is an external catheter that has tubing and a pump to draw urine away from the body into a canister so that your mom would not have to get out of bed in the middle of the night to pee. Not sure if this is something that would work for your mom, but it might be a possibility.

@wctdoc1943 Thank you very much for this response. I find it really helpful. It makes me realize my sense of responsibility/obligation is getting the better of me. I will look into hospice.
Thank you again. I appreciate your feedback!

@hikingcaver

I know what you mean by needing a break. I have to take my husband every place that I go because I don't think that it is safe to leave him alone. I wanted to find someone who could watch him for a couple of hours while I went to get a haircut or went to get groceries. A social worker gave me the name of a couple of agencies. The caregiving agencies had a 12 to 14 hour a week minimum at $40.00 to $48.75 an hour which would amount to $560.00 or $585.00 a week and they stipulated that it would have to be ongoing and not for only one week. Kind of spendy for a haircut or to go for groceries!!! This is so difficult because I wouldn't want to have someone watch him who hadn't gone through a background check or who wasn't knowledgeable regarding Alzheimer's disease.
Next month it will be 3 years since my husband was diagnosed with Alzheimer's disease. I have to admit that this has been the hardest 3 years of my life. Time has changed the way I am feeling about a memory care center for my husband. We have been married for 58 years, and I love him very much, but I can't go on like this. I am 80 years old and I'm exhausted.

@katrina123 she had the pure wick when she was in hospital, and it was pretty amazing. However, she is resistant to change. She’s always been so stubborn. She won’t even use a bedside commode.
However, I think the home PureWick could be a great solution. I’ll have to do a little more research on it.
Thank you!

@hikingcaver I agree, it really is the worst disease. It’s a roller coaster of emotions and utterly exhausting.

@katrina123
It breaks my heart to read stories like yours. And sadly, a lot of people are going through these situations. It seems to be epidemic, and the cost of healthcare makes it very challenging for loved ones to find proper and affordable care. There are dedicated organizations for Alzheimer’s that are very helpful.
You’re not alone. ❤️

I’ve written asking the same thing - how do people handle the nights but now I label it sleep debt and deprivation. I’m exhausted from the days and nights. My husband is 78. Looking back his cognitive decline began many years ago - around 2016. He was diagnosed w MCI in 2023 and now he has moderate to severe Alzheimer’s confirmed by Tau217, PET scans and his latest MRI.
We bought into a CCRC that has all levels of care with the idea that someday we would be living separately- him in Memory Care and me in the apartment.
He is 78 and I am 73. We are set to move in August.
I wanted him to move in with me. He goes to an adult dementia daycare and loves it. Those three days give me some peace and freedom. We also have a caregiver once a week.
But nothing is taking care of the sleepless, confusing, argumentative nights. I have to get up with him at least 3 times a night.
He takes Trazadone which helps him fall asleep and then a small dose of klonopin in the middle of the night to help him calm and get back to sleep. That doesn’t always work.
He is also having bathroom issues and needs 24/7 help with everything.
I am exhausted.
I just put him on the list for Memory Care and have toured the unit with him many times.
Here’s the thing- when he goes to Memory Care I will sleep but I will go be with him at least part of most days. I will not have an entire day to myself. Memory Care is not as stimulating and social as day care. It’s also expensive but our long term care insurance will cover it.
The CCRC. has lots of activities and programs that he can still go to if I or an aide take him.
If he slept I think I could handle more.
In the interim I am going to have to hire an aide to be here a couple nights a week so I can sleep but the idea of someone in my home at night is unsettling and I’m not sure I will sleep anyway.
The bottom line- Memory Care is often the best option for both as we can get our sleep and be pleasant and visit so we are not leaving them just insuring their daily and nightly sleep and safety.
I never thought this would be how we spend our retirement, but we are going to make the best of it -TOGETHER even if I’m half a mile away.

@katrina123 I think Katrina's sound words are valuable. My husband is in the early stages of MCI or that's what they say. He is still independent, but his memory lags, he's confused at times, agitated quickly, is slow to communicate clearly, which is so unlike him. He needs a lot of help, with turning the tv on, phone and pc problems. He's anxious over all of it, which makes it harder for me. I read the above comments, about not sleeping, and 100% caregiving, losing jobs due to time off, and it's all sad and it makes me remember when my own mom was sick and I flew in for 30 days, I went back and had lost my job, too. Noone can tell us what to do, but I did see my 84 year-old neighbor, going through the same thing. Her husband refused to get home health care for her. And she needed it in a more advanced stage of Alzheimer's. He refused to have any help at night, and his wife desperately needed it. My friend whose mind was slipping away, needed home health care, a personal care aid, and a day care center would have helped for her socialization, but her husband refused it all. He was in denial. He kept trying to take her up to our Club gym, and leaving her there, where they finally told him, he could no longer do that. She needed to be attended to. They finally moved out of state closer to her kids, where now, she has all the help she needs. She's learned how to hold a toothbrush and fork again through physical therapy. Everyone's financial situation is different, but I believe, we have to balance our loving, thoughtful caregiving with professional help in our house and/or outside our house when the time comes. It's everyone's reaction to want to keep their cognitive impaired loved one at home, but I do believe at some point in the progression, it becomes impossible for us to do that, unless we can afford full time home health care. It's hard to say what I will do, when the time comes, but in talking to my husband, we both agreed, if either of us can't take care of one another, we gave each other the "green light" to do what we need to do, in the best interest of both of us. My heart goes out to us, as caregivers, to be put in this position with knowing what to do for our loved ones, and for us.

@ Gratia. I was in your exact situation a couple of years ago. Getting up 2-4 times per night. I don't know if you can get the major relief I got from a couple of minor changes:
1. I stopped giving my husband liquids 3 hours before going to bed.
2. I started giving him his night time pills with ice cream instead of water.
.
It was fantastic. Suddenly he was sleeping through the night or waking once. And the big additional benefit was that he woke up much less confused and in a better mood! I was not the only one experiencing the effects of those bad, broken up sleep patterns. He was too!

We have stayed with that schedule. Over time as he became incontinent, we moved from underpants to diapers at night. We put on two and put a "guard" in the inside one too. I can check on him once before I go to bed and remove only the guard, and, if necessary, the inner diaper if they are wet.

Wishing you well!