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Vicky54 Asked August 2018

Moving my mother into a 55 plus community. I know this will be only for a short time. Where do I go from here?

We moved my mother from California to where we were living out of state 3 1/2 years ago. She had mild Alzheimer's at that time and continues to have mild Alzheimer's. She has been seeing a neurologist since she has been with us and her points have only gone down 3 points on the test the last 3 1/2 years. We had her live with us for the first 6 months and this did not work out, caused nothing but stress in the house. There is only my husband and myself and my husband never knew her before Alzheimer's. So with her doctors approval we moved her into an apartment nearby where I could see her daily, give her medications, help with her other needs. She was also allowed to drive which caused nothing but stress because she would get lost, lose her keys. (This also was with her doctors approval). I had to end that when she got into 2 accidents the 2nd being when she drove herself into a storefront. She never told me about either the last one I found out when the insurance company called me trying to get in touch with her. This was 2 hours after I had surgery and was in the hospital. Finally had to confront her then take the anger and remove the keys.


Four months ago we had to make a move out of state. So of course my mother came with us. I am an only child so there is no one else to take care of her. We have again tried to move her in and stay with us and again this has turned into complete chaos in our house. My stress is so bad and the stress is even worse on my marriage. My mother can still take care of herself in the way of dressing she does not wander or have Sundowners. She does not have any organizational skills though it was a problem in her old apartment and of course she would not let me help. She would wear the same clothes over and over again she would buy food like she was buying for family of ten because she could not remember to bring a list or would act like she was going to cook something and never would. When we moved her I took a whole truckload of food to the food pantry and spent days going through things she was never going to use. I know I sound like a bad person and I feel that way. But I have spent my life in someway or another taking care of my mom who stayed single most of life and always needed me in one way or another.


I have checked out independent living and assisted living neither of which she can afford. So I have found an apartment in an over 55 community. They have some activities there and they also have a catering company where she could get her evening meal with a small fee. I wish I could do better we can not afford an extra $1500.00 plus that it would cost us to put her in assisted living. I know this will be for only a short time. My question after all this is where do I go after this. I know she will eventually have to go into a nursing home, memory care. I know she will not be able to come back to us. Do I start with Medicaid? It seems like everywhere you call just wants to send you pamphlet's but offers you no real starting point.

Dadsakid Aug 2018
I know what you mean! My dad has dementia but is independent in getting dressed and bathing, and for the most part toileting and taking meds. He had NPH and urinary incontinence but I’ve taken all his regular undies away and replaced with depends. I cook and drop off his meals daily, do his laundry, take him to his doctors, schedule everything, shop for him, and drive him wherever he wants to go.
I feel guilty I moved him here 4 months ago after he fell for the third time and spent 2 weeks in the hospital and it got too hard to Long-distance caregiver. However.... I’ve come to realize that he’s NOT totally independent and should probably be in assisted living. He stayed with me for 3 months in my house and it was mayhem and chaos. He is very difficult, agitated, moody, angry, and his OCDs are off the hook! He fixates on ONE little thing and doesn’t stop. I’m not sure when or how to move him again. I feel like he’s my responsibility, as my late mother cared for her mother in law in their home until she was 93 with advanced dementia.
No one tells you how to go about seeking Medicaid - I visited my neighborhood AL home and it was $6600 a month for LESS than what I’m doing now! Another AL was upwards of $10,000 a month. I feel like he’s ok in IL for now as long as I’m around, but it’s hard to juggle life with a job, health issues, a family, and f/t care for dad... but it’s necessary. We can’t afford $6600 a month for AL, so I’m The only option. Seems like all the AL facilities are private pay.

JoAnn29 Aug 2018
Hate to rain on ur parade but...Mom may not qualify for Medicaid in ur new state. She may have to be a resident for a certain length of time to qualify. So I would call the local office and run them by that first.

Mom must get SS. Use it to put her in Daycare giving you and husband some time to yourselves. Moms DC picked her up and dropped her off. It gave me time to run errands, have lunch with the girls and do things with DH.

What is it that stresses you and DH out with her. No time to yourselves, hire a sitter. Neither of you understand Dementia/ALZ? My husband felt I could play games with Mom. Really, her short-term memory didn't allow it. If they didn't do it before, they aren't going to learn it now. They get fixated on one thing. They don't remember if they ate or not. The first time she got lost, her keys should gave been taken away. When she lost them, they never should have been found again. I don't know why Drs. hate to take the keys away. It only takes a letter to the DMV and then the DMV takes it from there.

You say DH never met Mom before. Do you have children? I ask because if its just u two and no children, he is used to having you to himself. Then you have this person who is plopped into your life who needs to be cared for like a child. Because...you cannot get thru to them. Its frustrating. And its just you that has to take on this responsibility.

I also don't think Mom should be alone at this point. Just like a child, she needs to be watched. I think she will need to stay with you till she can qualify for Medicaid. In the meantime call your county Office of Aging.
to see what is available in your area. Maybe there is a Senior center Mom can spend some time at .

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BarbBrooklyn Aug 2018
That mini mental test that she's "only" gone down 3 points on? It's not telling you the whole story. Call your local Area Agency on Aging and get her an unbiased assessmemt of her abilities. Make sure you are there because she'll tell them she does it all on her own.

Why do you think you sound like a bad person? You sound like an ober-responsible daughter.

Your mother's lack of planning does not mean that you have to destroy your marriage to care for her.

I agree with CW that AL doesn't sound like enough care. And certainly not 55+!

Ahmijoy Aug 2018
cwille is right. Mom seems to have been uprooted a lot and that is not good for her. As her dementia progresses, she will become more and more disoriented by moves.

Its better to err on the side of caution. Seek out a facility that has skilled nursing and also Memory Care for her. That’s what I did for my mom. When she first started there, she was at about the stage your mom is now. However, it was about a year that she declined and after 18 months, we decided she needed a memory Care. Even though she was a World Class Complainer with me, the staff liked her and many would go to Memory Care and visit with her when we transferred her there (same building). Mom’s facility also had activities for their residents. And I was allowed to bring food in for her.

The financial office helped me apply for Medicaid.

cwillie Aug 2018
Look for a memory care that will accept Medicaid and then ask them to help you with the process, AL will never offer enough assistance for her needs.

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