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Over the last week she's gone to bed twice at 6:00 and once at 4:30. The latest has been 7:00. She used to get up at 7 a.m. so i adjusted my sleep schedule to match that but now she is up before that. On garbage morning she said she was up at 5-something taking the garbage and recycling out to the curb. Today she could not tell me when she got up. The problem is she's at a point where I'm not supposed to leave her alone. What options can you think of? I have major depressive disorder and sleep apnea and i need at least 9 hours of sleep. I am resisting getting a door alarm because of this. I don't want to go to sleep at 7:30 or 8 and get up at 5. I feel like I have no life as it is. Maybe that sounds selfish or difficult but I am really struggling with this dementia thing and feeling a bit panicky. Also a door alarm wouldn't keep mom from being by herself if she didn't leave the house. I started caregiving 24/7 in February and said that when the time came when I couldn't get enough sleep it would be a deal breaker. I am wondering about getting home health in for the early morning but not sure how long finances will hold out. I don't want to consider a nursing home yet because she doesn't believe there is anything wrong with her and has said if she ever had dementia she would rather stop eating. I'm hoping someone who is removed from the situation can see a possible solution more clearly than me. Thanks!

Thanks, Angela61! Oh, I feel for you waking up several times a night. I hope it gets better.
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Hi jus2ofus. I'm in a similar position to you. We brought mum with quite severe Alzheimer's to live with us in May. It's been horrendous. Her sleeping pattern being the main problem. She would go to sleep 9pm then wake for a wee (and diaper change) 12am 3am then up at 5am. My husband and I were absolutely shattered. I insisted on sleeping tablets, (and antipsychotic drugs for extreme agitation). These drugs have definitely helped with her agitation and she's sleeping (only slightly) better. A routine has been established and we're still working on it.
I suggest you demand help in drug form from your mums Dr. Tell Dr you can't cope with your mums routine and need to establish a routine to suit u. It will be hard work but I'm sure you will be able to improve things. Give her sleeping tablet at same time every night. (I give it at 12am Wen my mum wakes to spend a penny and she usually goes through till 6am.
Getting into a routine was key for me. Things are not perfect by any means and I do have help of husband.
Good luck.
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Thanks again, everyone. Right now I *am* getting enough sleep--because I don't have a baby monitor or door alarm. I am just concerned that this is not safe. The only thing that's happened so far is that she took the garbage out at 5 a.m. I put a note on the door the next week saying we're not allowed to take it out till it gets light. She said "someone" was being funny. Physically she's doing great. Yesterday she didn't know the word "apples" and today when we went to a friend's to make cards, she had no idea she'd ever been there before. Kept asking me where we were going.
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Just2ofus, I also couldn't leave my dad alone, so for a couple of years I used several baby monitors to keep tabs on him all night, until I decided killing myself with sleep deprivation wasn't a good plan. It's been reported that more than half of caregivers die before the person for whom they are providing care -- stress and sleep deprivation do kill. So, I researched several memory care facilities and visited the ones I liked best many times on various days and times of day and eventually chose the best one that was luckily just a nice 5-mile bike ride away from me. To use your own words, "...when I couldn't get enough sleep, that would be a deal breaker." I think your deal is broken and you should recognize that your mom's financial situation won't be any better after you've killed yourself (unless you've got buckets of life insurance, of course), so it's time to start looking for the best facility you can find that accepts Medicaid. Best wishes and kudos to you for taking care of your mom.
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Thanks, Ahmijoy, and so sorry about your situation!
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Just2ofus, when a caregiver reaches the “deal breaker” point that you have, we always recommend a facility. If I asked the population here what I should do in my own situation, to a person they would tell me to put my husband in a facility. Financially for me and emotionally for him, that is impossible. The upset and trauma that would cause would be much more difficult than just keeping on caring for him here. I deal with financial worries and worries about his health on a 24/7 basis. I probably get 2 hours of sleep a night and have for years. Doc won’t give me Ambien any longer and I’m immune to it anyway. There’s no doubt I’ll crash one day. Heart attack, stroke, something will get me. 40% of caregivers die before the people they’re caring for.

So, I understand your hesitation to place your mom. Because of a few rotten apples, all nursing homes are seen the same way insane asylums used to be thought of decades ago. Plus, many children feel they owe it to their parent to care for them.

Take a good, hard look at your life. We both know it won’t last forever, but while it does are you ok living like this? If your own health goes down the tubes, what will be left of you when she passes? Will you be able to carry on, or will you, yourself need to go into a facility?

Be proactive for yourself. Find out what help Mom qualifies for and apply for it. There’s help in every city. It’s not easy to ask for the kindness of strangers, but it’s time.

Good luck to you and come back with updates. We care!
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P.S.S. I meant she woke up at 7 p.m. yesterday after going to bed at 5 p.m.
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P.S. Yes, I fully expect the money to run out and have to apply for Medicaid.
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Thank you, everyone! Mom naps in her chair in front of the TV all day when we're not out and about (shopoing, museum, etc). I try to get her out every day but she's only good for a couple hours. I don't know how to stop the napping. She gets hungry at about 3 and i fix her a snack and then she wants to go to bed instead of eating dinner. The update is that she woke up yesterday at about 7 and was very confused, like i hadn't seen her before so ended up taking her to the ER. They found nothing and sent her home. Right now it's 6:20 p.m. and she's still up. She was back to "normal" today. But she got up at 5 a.m. I am worried that she will get up in the night in as confused a state as she was in and it wouldn't be safe. I am thinking to call a home health company to come in while I'm sleeping but am open to more ideas.
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This is very common and very vexing! Have you discussed it with the doctor who is following her dementia?`

You do not sound selfish at all. Everyone needs enough sleep for optimum health, and you have a medical condition that makes it even more imperative for you. You recognized that when you couldn't get enough sleep it would be a deal breaker. I think that time has come. Give yourself a little time to try out suggestions you get here, and any ideas her doctor has. But while you are doing this also explore the care center options available. This should probably start with a needs evaluation. You can call your Area Agency on Aging to set that up. (Be sure you are present during the evaluation. Elders (even without dementia) are likely to exaggerate their abilities. The assessors know this, but they have to write down what they are told. It can be very helpful for something who knows the situation to make sure the answers are accurate.)

You mention that you are not sure finances will hold out. Does that mean when the time comes for a care center you'll have to apply for Medicaid? Did you know that Medicaid has programs that pay for in-home? For example, if they determine she is eligible for 20 hours of an aide each week, you could have one 4 hours each weekday morning, or 3 hours every day. They might provide housecleaning services, to free up some of your time. If Medicaid is in Mom's future, applying while she is still able to live with you makes sense. Then everything will be in place when there really isn't another choice but a care center.

Caring for someone who can't be left unsupervised 24/7/365 is not a one-person job. It can't be done and still maintain your health and your sanity and your enthusiasm for life. Some help in some form is absolutely essential. Care centers cover this situation with 3 shifts of well-rested caregivers each day, all of whom have access to immediate backup and assistance. They all get time off and vacations. None of them cook or do the laundry or clean the building. How can a single individual provide that level of care in a home? Only with help!
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I tried to keep Mom up till 9. She still fell asleep. I don't do mornings well. I also need sleep. I had Mom for 20 months, the first night in AL was heaven for me. You really never get a good nights sleep with a Dementia person in the house. Its like having a baby.

I bought the baby safety covers for my door knobs. My cousin had key entry deadbolts put on his doors.
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Mom may be experiencing Sundowning. My mom did. People who experience this can’t tell day from night. My mom had the shade in her room pulled down tight all the time so even when I tried to explain it was 11AM and not 11PM, she didn’t understand.

Try keeping Mom up a half-hour later each day or two. Take her outside in this nice weather. I know if she dozes off your can’t very well shake her awake. The later meal times Eyerishlass suggests may help too. Give her a snack at mid-afternoon. If she naps in the afternoon, try not to let it last over 1/2 hour.
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Have you tried keeping your mom up past 7pm? Have dinner later than usual, that might help keep her up. And hopefully if she stays up later she'll sleep later in the morning.
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