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Hello, I'm kersey, 62, female, moved from California to Florida 10 years ago to care for parents, after dad was diagnosed with dementia... He passed away 2 1/2 years ago. The last 5 years has been full time 24/7... I've had two days off in 5 years... I'm tired!
Mom did ok to begin with but basically quit on life, since June last year? She spends most of her time in bed, eating and making huge messes, she's only 86.
After dad died, (the last two years of his life I averaged 2-4 hours of sleep per night) mom was having a rough time sleeping at night, so I started sleeping when she did, afternoons and I get up between midnight and 1am with her... But since June? Last year, she has no schedule, she's in bed, snoring, I go lay down, she's up, she won't leave the doors closed or locked, she invites everyone in, one memorable occasion a delivery man who kept telling her he couldn't come in, while she kept insisting he come in because she couldn't come out, in her depends and nothing else!
She opens windows, which is killing my electric bill, she switched the ac to heat in Aug in Florida, she put foil in the microwave and caught the food on fire, just a couple of that's happened this past month, there is so many more. I can't watch her constantly, and I can't keep going without sleep.
So, sorry for rambling (no sleep last night).... The question is when do you sleep?



Thanks for letting me join this group and for any response❤️

The answer isn’t when to sleep, it’s that you need help. You are doing beyond what any normal person can do. Please reach out to senior services, adult day care, anything you can think of. Mom really needs to be in a 24/7 care facility, and if she has property to sell, you need to sell it and use the proceeds for her care.
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Reply to Fawnby
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Kersey Sep 7, 2022
Thanks for the response.
There is no money for a care facility.
I tried several services for dad when he was still alive but had trouble getting anyone to show up. Did a ton of paperwork, caseworker showed up regularly to check on us but no luck getting someone to come in 4 hours for 3 days a week.
I did call my brother, who is struggling in his own life (and lives in another state)and asked for help. We are working on getting him down here in the next few weeks, so hopefully we can come up with a working solution.
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Why is she not Medicaid eligible?
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Reply to AnnReid
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No one can do what you are trying to do. You either need to hire help or have your mom placed in a facility.

You cannot take care of your mom if you are falling apart. You need help. Try and find home help. Go to aplaceformom.com and they will help you find someone to come to your house, If you cannot afford it, apply for Medicaid for your mom and get her placed where she can be safe. You can visit as often as you like. Remember applying for Medicaid and getting her placed could take a while, so start now.
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Reply to Donttestme
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From your profile: "I moved to my parents home 10 years ago, to help out, dad had been diagnosed with dementia and my mom is not the caregiving type.5 years ago I quit working to provide full time care.... Dad passed 2 1/2 years ago. Mom is only 86 but she spends most of her time in bed, mainly just getting up to eat and or drink for the past year and a half...
Oh about me I'm 62 and I'm tired "

Why did you quit work at age 52? Did you jeopardize your retirement? Are you getting compensated for caregiving?

Being deprived of sleep is a form of torture. Time for a facility for your mother.

Are you an only child? I'm curious as to how you ended up in this situation. Are you POA/HCPOA for your mother?
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Reply to CTTN55
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Kersey Sep 7, 2022
Thanks for the reply.

I quit work at 57 because mom couldn't deal with dad, I could.

No compensation, no retirement
No money for a facility,

Yes we did all the paperwork after I first got down here.... I've got POA, durable, nondurable and one for medical care plus DNR

I've got two brothers, both in other states, struggling on their own but I did place a call to my older brother and told him I needed help.
Hopefully when he gets here we can come up with a plan.
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You can’t possibly go on like this. If you can’t get her on a sleep schedule where you get at least a solid 7 hours she needs to be placed. Have you spoken to her doctor about medication to help her sleep? My father was prescribed something that made him very tired. He started staying up very late watching tv and then would get up just a few hours later. Not normal for him as he was always in bed early. When I was home I would give him his pill at about 9:30 and by about 10:15 he was falling asleep watching tv. I would then say “Dad, it’s late. Let’s go to bed.” Another way of dealing with microwave situation is simply unplug it. She may not remember how to plug it back in and think it’s just broken.
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Reply to Caregiverstress
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I would talk to her doctor about this. She needs something for sleeping at night to get her hours straight. My dad was given melatonin and it helped him sleep all night. I got a camera to put in his room and I’d keep the monitor open on my phone all night to make sure he didn’t get up and get in to trouble. I didn’t sleep great during that time but enough to get by. Maybe you’ll need to put your mom in assisted living if it’s too much to handle.
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Reply to Dizzerth
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Mom is 'only 86' which in reality, is quite elderly. And suffering from advanced dementia, it sounds like, based on your description of her behaviors, including meeting a delivery man naked but for a Depends brief, insisting he come inside the house. Sleep difficulties are classic dementia related issues, along with the rest of what you describe; putting foil in the microwave, playing with thermostats & putting heat on in August, etc. She probably hasn't 'quit on life' but is so far gone with dementia, that it's easier to stay in bed than try to function outside of bed.

Mom needs placement in a Skilled Nursing Facility with Medicaid funds now, if she has no finances herself. You need sleep and mom needs more help than you're capable of giving her. Where's her doctor in all this? Has she been given a full medical work up and diagnosed with anything (like dementia?) That's a first step since a diagnosis is necessary for placement.

For anyone to even suggest your mother is 'bored' is not only rude and flippant but indicates a total lack of caregiving experience and begs the question, WHY are you here giving out advice??? Those of us with loved ones who have or had dementia can recognize the symptoms, and tell you this isn't 'boredom' at play, not by any stretch of the imagination. This is illness that requires attention in a safe environment where there can be no cooking going on, no electrical appliances to fiddle around with, nothing to hurt herself with, no chemicals to accidentally ingest, no unlocked doors to roam out of and get lost, etc. The possibilities for your mom to hurt herself are literally endless living as she is at home, with a full kitchen and the lack of knowledge on how to use what's in it. I shudder to think what could happen by accident. We've had a poster here who's mother burned down the house due to dementia! Undiagnosed and misunderstood brain disorders can and DO wreak unimaginable havoc on families sometimes. Please understand how dangerous it is for mom to be unsupervised at any time during the day or night.

You said, "There is no money for a care facility." There is Medicaid for long term care. If mom has a home, it can be sold to finance her stay until that money is spent down and then Medicaid kicks in. When your brother arrives, you can see an Elder Care attorney for guidance in that realm. Medicaid also provides some level of in home help; although you've looked into that with your father and things didn't pan out, look into it AGAIN. And into long term care with Medicaid as well. Something has to be done, right?

I wish you the very best of luck formulating a plan to get mom placed into care asap. You can't do this alone, my friend, it's literally impossible.
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Annie65 Sep 14, 2022
So dementia patients can't get bored? How is this "rude and flippant "? Don't you ever get bored? Seems a fairly common thing for a human being to feel from time to time-demented or not. And I took care of my extremely demented mother for 4 years so yes, safety first but such a strong reaction as " this isn't 'boredom' at play". What am I not understanding about this?
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WOW, your Mom sounds like my Mom before she was diagnosed with dementia. We just thought she needed less sleep because she wasn't physically active enough. The short answer to your question is that I sleep when the caregiver is watching my Mom.

In my case, my Mom then fell and became a fall risk. Then she would try and get up and forget that she couldn't walk or she would sleepwalk and not be able to keep her balance. So we hired an agency to provide nighttime caregiving and to stay up with her, 9 hours a night. At that time, when the caregiver came, I would drive home, then wake up in the morning and drive back to her condo to relieve the caregiver. I couldn't sustain the schedule. Once it was allowed, we enrolled her into senior day care and that helped a lot. It wasn't that she did anything, it was the fact that I was always listening to figure out what she was doing. Then she was lonely and wanted to talk, however, her version of talking was discussing how she was wronged and how others were stupid (now, remember, she is the one with dementia!)

I was definitely depressed. I couldn't deal with my Mom, I found fault with everything and got mad at people when they couldn't fix my issues immediately.

My siblings came to my rescue and made me aware of how bad off I was. I got help from a therapist. One of the things I did was research and tour care homes. (If you have a plan for the future, your stress levels are significantly decreased.)

Another one of the changes was that when the caregiver came, I slept in my Mom's condo, then woke up about 15 minutes before the caregiver left. Then after I took my Mom to senior day care, I would go back to my place, take a shower and get whatever needed done. I easily gained another 3 hours of sleep by sleeping at my Mom's place. In addition, my Mom could not complain too much about the caregivers as I could hear and was present for whatever went on.

So you ask, when do I sleep? I sleep when there is a caregiver that I trust to take care of my Mom.
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CTTN55 Sep 11, 2022
"My siblings came to my rescue and made me aware of how bad off I was. I got help from a therapist. One of the things I did was research and tour care homes. (If you have a plan for the future, your stress levels are significantly decreased.)"

Did your siblings think it was time for a care home for your mother? Do they ever come and relieve you from your caregiving duties? Or help in any other way? How did the brunt of it all come to be placed on you?
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Mom needs to be evaluated for Dementia. Would have her get a good physical with Labs to test her levels. If Mom has no assets than you can place her in LTC with Medicaid paying for her care. It would also mean any SS she receives and any pension go for her care. If the house is hers and you have been caring for her, the house is an exempt asset and you can stay in the house but may need to go back to work to keep it up.

You need help. Call Medicaid and see if you can get "in home" help.
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Reply to JoAnn29
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Sleep is hard. Even when I would have time to sleep it's not very sound. I cannot advise on what to do about that. But you may want to get a lock for the thermostat so she cannot adjust it. They are about $20. Or maybe invest in a programmable one that you adjust from your laptop or phone that she won't be able to adjust without a password. Over time it'll pay for itself from the savings on your electric bill. If she is causing a fire w/ the microwave, you may want to get a lock for that too. That's also about $20 or less. She may view it as punitive, but in the end it's for her own protection.
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