How can I get some respite from taking care of my mother at home?

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Nineteen months ago I began caring for my elderly parents. My siblings are no help...In fact they do not come see her at all - neither do the grandkids or the great grandkids. Mom's dementia was out of control for a while.

I have worked hard to get her physical health managed - including diabetes, food allergies, etc. Dad died a few months ago so now I have no help at all.

So there are a few things I need thoughts on:
1) She is not sleeping well and we are now awake at 3:30 am again. This means I do not sleep and am feeling tired a lot. It is not a huge issue yet, but if I cannot figure out how to get her to sleep at night (no she does not sleep all day), it will take its toll.
2) She constantly says, "What shall I do?" Any ideas what she is really saying or needs?
3) She does not qualify for Medicaid nor is there a lot of extra cash for additional help. Any ideas for getting respite for me?

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Sleeping and dementia is really challenging. My dad, 82, 5 years with Alz, used to stay up for all hours keeping my mom and caregivers constantly exhausted. We found that getting him on and keeping him on a routine really helped...including getting him up and out as much as possible. In fact it seems my mom's main mission for the past few years has been social director; constantly trying to find things for him to do to keep him stimulated. This seems to make the evenings easier to deal with in general.

As mentioned, medication management has been crucial. Things were going well for a long time then recently, of all things, he started hitting himself in the head at night keeping everyone awake again. This seems to be the way it goes with most dementia, plateaus where it seems as things are ok for a while, maybe you will perceive they are even better, and they they begin to decline again to another level of plateau.

By the way, what makes you say she won't qualify for Medicaid (I presume you mean financially, not medically)? If she can't afford adequate home care and doesn't YET qualify for Medicaid it means she is somewhere in between. If so, then I would strongly urge you to explore Medicaid planning now. It may be very possible to qualify her for Medicaid home and community based services immediately while preserving remaining assets for her benefit.

Doing so will afford you more options which you will certainly need as you move along the continuum of care with your mom. I have found that the local Area Agency on Aging is a great place to find respite and other resources.

By the way, if her husband was a veteran she may be eligible for up to about $1,000 per month for care. Search for "veterans aid and attendance"
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I need to add she is making progress and her dementia seems to be at least in part reversible with her health issues managed - so I am holding out hope, but maintaining a level of realism. I do not want to put her in any kind of nursing home and can manage her at home, but need some help.
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Hi! God Bless. I am in a similiar situation. I am caregiver for my 92 year old father and 88 year old mother. The way you describe your mother is almost exactly like my mother, except she has lymphedema not diabetes.

Dad has been the strong one and just this week is having complications. So I am dealing with caring for both.

Anyway, have you discussed help with home care through your mother's doctor. I finally did that this week. They were able to refer me to a local service. Now I am waiting for the evaluation for the extent of care they will get. My parents are under Medicare and FBCBS.

I really can sympathize with the sleep issue.
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There are some senior home that allow for respite care at there places-I wonder if you could find some retired persons like nurses who might come in at night to stay with your loved ones to give you a break I know the nights can be so hard when caregivers have to be awake at night to give care-there is no way to get rest during the day.
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First of all know that you are an incredibly strong person to give the support to your parent(s) at this time when they need you the most. I too am in a similar situation. Both my parents, (Mom has dementia), moved in with me about 4 years ago turning my single person with cats home into a people family. I hope you recognize how important you are to your Mom at this time.
As far as respite from care, yes there are options. I have found that there are volunteer groups where a suport person will come out to give you a break. You might want to check in your local newspaper for support groups as well. Also, you may want to talk to her Dr. about a sleeping medication. You must take care of your needs which is hard I know when you have constant demands on your time. I wish you all the best and just know what a wonderful thing you are doing. I know it sounds like patting yourself on the back but you deserve praise.
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I feel for you too. My mom is 90, suffered a stroke and has trouble sleeping at night too. She sort of cat naps during the day but usually has trouble getting a full nights sleep. I've talked to her about sleeping aids but she says she doesn't want them as she will get confused. She had not been doing to much walking and exercising during the day but now that I have a very good home care provider she does a little more. But it always seems as though she doesn't want to go to sleep when I'm there staying the night.

Maybe it's that she just wants to talk as we do laugh together. I am so glad when she laughs as it's almost as if I'm the only one who makes her laugh out loud and that makes me happy. However I would like her to go to sleep for atleast 6 or 7 hours just so I could get some sleep too.

So if anyone has anymore suggestions on this I'm interested too.
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We had already applied for the VA pension, and it will be another 3-4 months on that. Medicaid is not an option. Basically there are enough resources for back up and we can live on the monthly income, but not to the point of paying for a lot of extra care. We did find a Caring for Caregivers program and jumped through all their hoops, but the organization is so badly organized that I found multiple problems with going there and they were not available at appointed times, etc. Then we had a time to take Mom and well, bluntly put, I will not take her there to stay for any length of time. They presented a different image during the tour time. (And it was one of the times when the person we had an appointment with was not there, so I could not leave her that time which totally ruined the plans I had for a friend to take me to a movie for my birthday.)The Area Agency on Aging (which my dad helped start when he worked for the Dept on Aging in our state) is looking for options. I think I am going to contact the pastor of a church we attend (but are not members of any congregation) and ask if there might be a once a month for a few hours person that could help. And I got a friend set up for once a month. A neighbor that will help is going thru difficult times of her own right now. In a few weeks that will be possible for once a month. I am trying to find 4 - 5 people each once a month which will give me once a week off. She is doing better sleeping since we found more food allergies that were the problem. I keep her very busy - walking 1-2 miles a day, physical therapy, speech therapy, visiting friends and family, playing games, working puzzles, anything I can think of to keep her doing things. We are also exploring a program at the local YMCA that would offer up to 3 times a week. Some things I have to go with her, but that is different than being home alone with her. As long as her diet is well managed, we little to no anxiety problems. Although there are days when I think if I hear, "What shall I do?" one more time, I will scream. :) Thanks for the ideas. One more thing I am going to find out more about is if VA will help with respite for Mom - they were gonig to with Dad.
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This is all happening to me with my husband. I am so depressed as I am only 56 yrs old and never thought my life would be over at this age. My husand has Parkinson's with dementia and nothing is easy here. I do get help during the day and I am very thankful but is still takes a horrible toll on me. {hysically he is "healthy as a horse" and his vital signs and all other blood work is like he is 35. He is a healthy weight and eats 1/2 gallon of ice cream at one sitting followed by a box of cookies. I go to counseling but I am angry and sad all at the same time. We have no friends any more as who wants to be around that? I get tired of doing EVERYTHING! It is a lonely life as a "caregiver" and I have been a RN for many years. Help, whether emotionally or physically is very hard to find.
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can i just start off by saying my heart goes out to all of u wonderful people for taking care of there parents i do my best taking care of my mom she has diabetes it is really hard and people tell me that i'am doing a wonderful job and i think that i'am my mom calls me her guardian angel but i tell her that she is mines so i just want to say to you guys keep on being there guardian angels.
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My situation is slightly different. I care for my Mom who has Alzheimers, Diabetes and a new situation with seizures. I work full time and my live in boyfriend does too. He is able to pop in and out at home to check on her and she seems to really appreciate it, so do I. But I know this is inconvenient for him and I really worry on days when I know that he's not able to. I've checked into an Adult Day Care program in my area and I am seriously thinking about signing her up for 2 or 3 days a week, just so that I know she is being looked after and that there are some activities for her to enjoy. She does very well at home because she doesn't try to cook and I normally have her take her shower and have breakfast before I leave. I also leave her snacks on the table for lunch, she's not much of a lunch person. Putting her in day care will take funds out of her a/c but I would much rather spend it that way than to have her pass away and my siblings who don't seem to care about her begin to fight over or get mad a me for spending her funds. I am trying to figure out how much is a fair amount for her to contribute monthly towards living expenses. There is no set rule for this but I will need to address this sooner than later. Another thing that I do for my Mom is to have her fold towels......she really enjoys this, go figure. So some days I will leave a basket of towels for her during the day and she folds until her heart is content, that usually doesn't stop until I get home and put them away but that's OK she is content and busy and one less chore for me. Another great idea that was given to me was to give my Mom a project of labeling pictures. Make copies of pictures and put them in some type of folder and have her go through and write names on the pictures. This may be more of an Alzheimers/Dementia tool but it may help in the area of "What shall I do?" I know that care giving is challening and I'm far from perfecting this job but I thought that I would share my thoughts..........it helps me feel better too.
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