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This time we've had mom for 3 months; at least I have a brother who helps out and takes his turn. For the next few months, we will take turns for about a month each. There is no one else. My family is beyond frustrated. The other day, we woke up and she had an accident at 3 in the morning; my son had gotten up to go to the bathroom and found it and cleaned it up. At 5 in the morning I found her getting ready to cook bacon; she had the pan on high! We don't leave her alone; someone is always home, but if these night adventures continue we are scared that they won't be discovered until it's too late. She gets her nights and days mixed up; she sleeps each afternoon for a few hours at a time.

My daughter is autistic and has an emotional melt-down every day and my son who tries to help is getting tired of the verbal battles she has with us when we don't succumb to her wild stories and tales of fantasy. We all need help. As caregivers, as the patient. Where do we start? We don't have the resources to place her in a home and she refuses to go. Every day she tells us everything is fine and we don't need to worry about anything. This weekend my brother takes over for a month; then she returns. I need to have options in place.

A local social worker suggested we visit residental nursing homes; I guess that is next. We do not have POA or guardianship, so I am not sure of her rights or mine at this point. Any suggestions?

In the midst of all of this I have to find a new job as I have lost mine to budget cuts. This might mean uprooting our family and finding a new place that will accomodate her too.

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Warm cyber hugs to you! What a difficult spot you are in.

To me, it does not make sense to provide comfort for one person at the expense of severe distress for four people--and more, counting your brother's family. (Sorry. I do a lot of cost benefit analysis in my work, and it laps over into my daily life. I know that a family is NOT a business project, but I think in this case the principal applied.)

One thing that would help is getting both caregiving households is to get your mother to sleep through the night. Her doctor should be able to work with you on that. That was the first problem I had to solve with my husband's dementia. I absolutely could not have kept him at home if that hadn't been solved (with drugs, in his case).

Another option, if treatment doesn't help with the sleep issue, is to hire a nighttime caregiver. There are financial and logistic issues with this, but it is something to consider.

It is excellent that you are getting respite -- taking turns with your brother. As the other posters mentioned this might case some problems with Mother. Children adapt as needed to different environments. They adjust their behavior for church, school, Gramma's house, home, etc. But elderly people with dementia are less adaptable, and your arrangement might increase her overall confusion. That doesn't mean you shouldn't do it. Just observe carefully her reactions.

Dementia is a very, very cruel disease and it is devastating for the whole family. In many (I think most) cases the disease reaches the point where a person cannot be safely cared for in a private home.

I strongly suggest you start the Medicaid application process for Mother. Even if you are able to keep her at home there are many benefits available.

And also discuss with your brother where it would be best to find a dementia care facility. Midway between the two of you (if you don't live in the same town)? Near one or the other (so someone is close for emergencies)? Whereever the best quality seems to be available? This is not for moving her in next week, but prudently planning ahead for if/when it is necessary.

Once you have a general location, start looking at what is available that accepts Medicaid.

To care for our parents, I think most of us are willing to accept some inconvenience and make some sacrifice. I think that your situation goes beyond reasonable expectations. And the sad fact is, even with the sacrifices, you may not be able to keep your mother as safe and happy as she would be in a good care center.

Best wishes to all of you as you work this out.
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Hi applesed1,
Wow- I know what you are dealing with!! I have a daughter with special needs (she is 16 with Rubenstein -Taybi syndrome).She has MR and a lot of autistic like behaviors and challenging behaviors. I just watched my Mom for a week to give my dad a break and it was not easy for my girl. Actually she did pretty well while Mom was here it is NOW that she is having trouble. She does that. She gets through a tough time and then unloads after the fact. I guess that is good but it sure has been rough these last 2 weeks. We came sooooo close to going to the ER because we could not control her outbursts. She has limited communication so it is so hard to figure out just what it is that has made her so upset. I had thought that, when it was time, I would take my Mom in BUT after these last 2 weeks I am seriously reconsidering. AND I am going to have to have talk with my siblings. They somehow think that because I am a stay at home Mom I am better able to care for Mom but the reality is my husband had to take a lot of time off to help - he usually works until 7PM but had to come home around 4 or 5 everyday while Mom was here.

I really think you need to put your daughter first. - not that you aren't- I mean ,be selfish for her, I guess. And I have to say, as nice as it sounds , taking turns with Mom one month each, I think that is going to be hard for everyone involved. Your Mom will probably get confused each time she is moved and have to readjust and your daughter as well. Please consider putting your Mom in a NH. I know that sounds mean but your daughter needs you and your son, too! (sorry- my daughter is an only-I forgot you have a son). And it will probably be the best solution for your Mom as well!
In a perfect world you could take Mom in and everyone would chip in and your daughter would learn from the experience and your son would learn from the experience and everyone would be stronger and nicer and better for it BUT- in reality, it is probably just too much. Sometimes, the best care we can give our parents is in a NH.

Sending you hugs!!! Feel free to post on my wall if you want to chat about having a mom with special needs and a daughter with special needs!!! Good Luck and God Bless!!!!!!!!
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This is so stressful for all of your family. It is particularly difficult with an autistic child, so I don't know how much longer you will be able to keep it up. However, I trust that you will know what to do. Sometimes it is nearly impossible to keep someone with dementia safely at home. If your mother cannot afford it, you can apply for Medicaid on her behalf to cover nursing home care.

Until then, there are some tricks to keeping things safer. To keep your mother from turning on the stove either take off the knobs or turn off the oven in back (unplugging or turning off the gas). If there are drawers and cabinets that have hazardous things, put locks on them. I'm afraid I have no advice for the toilet issues. They are particularly troublesome. Your son was a jewel to clean it up.

I hope you are able to find a good place for your mother. She may do better staying in one place, rather than switching back and forth. It would be nice if you could find a good facility in the area that takes Medicaid. You could visit a lot without having to be concerned for her and your safety (and sanity). It sounds like a very good solution to me if she qualifies for Medicaid.
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