My Mom (58) is living in ALF and begging to move out. She has little money and I work full time and cannot care for her. What do I do?


She is on Medicaid because of her age. She does not qualify for Medicare. This is the only ALF I have been able to find that will take her. It's ok - but not the best and the Director has violated HIPPA policy in front of other residents many times. My mom hates her roommate (she is in a 10 X 10 room with a roommate.)

We believe she may have Dementia (waiting for final results). Now they also want her to have a bone scan to see if she has an infection or cancer.

I cannot have her live with me as I work full time an hour away - so I am not able to care for her. She gets mad that I won't let her come over. I cannot pay for her to live in another facility - most facilities are $1700 to $2500 a month and she only has $700. I do not know where I can go for help. I have tried the department of elder affairs - however she is too young. I haven't tried hospice yet - but with no diagnosis - I don't think she qualifies yet.

I have been caring for her alone for the last 5 years. I have a family (4 children) and she is very demanding of my time. I work full time. I just want her to be happy and comfortable and cared for. She calls me 5 to 10 times a day. I can't always take her calls and then she gets mad at me for not being there for her.

I get very angry and depressed. Although many times I drop what I am doing to help her - it's never enough. She demands that I let her move out on her own and respect her wishes - but the doctors have told her no she cannot live on her own. She doesn't remember those conversations. Then she demands that I let her stay with me - but I don't really have a place for her to stay. And then she would still have to go back. She would be literally sleeping for 8 hours and then going back and I wouldn't have any meds for her. (She is on a lot of heavy narcotics and I frankly don't want them around the kids anyway.)

She refuses to give me power of attorney - but I am supposed to deal with her bills and take care of everything she wants.

I have been to a therapist - but just talking doesn't feel like I am getting anywhere. She hasn't been able to suggest any viable options.

I feel very stuck and helpless. I feel angry that I can't do more. My brother passed away 2 years ago and there is no one else in the family able to help. She basically alienated herself from everyone in the family and has drug me away as well. The family got mad at her and now doesn't speak to me because I am her daughter.

Any help or advice or resources to where there might be help or aid would greatly be appreciated. I can't keep up the pace that I have been going at for so long. She has been sick off and on for 20 years. I took care of her for 5 years after high school - then my grandma took over until she passed and then it has been just me again for the last 5 years. She could live like this for another 20 years for all I know and I don't think I can handle it. It has affected my health - my relationships with friends and family and my relationship with my children.

I feel guilty not helping her...but most days I don't want to even talk to her at all anymore.

Please help!

Thank you for your time.

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I agree with what others have posted about taking care of yourself. I have worried, lost sleep and lost 30 pounds since I started trying to make sure my cousin is well cared for in ALF.

With dementia, you can't win. It's like chasing your tail. You are lucky to say the right thing and keep the person content or accepting for 5 minutes, but that may change in another 5 minutes. I have found that the day things will settle down will never happen.

You may drop it all, cancel appts and plans and run to their aid, only to have them forget they made demands that you come right away. The mindset changes continually. You have to set your priorities. Chasing the idea that you can make things okay, is futile, IMO.

I have tried to take the advice of others here and take it all in stride. I have no power to fix things or even meet her expectations, because they are limitless. I have concluded that finding a place that has the staff who knows how to deal with the patient is the best thing I can do.

The guideline I use, is how I would like to be treated if I were there. This guides me as to what is reasonable and appropriate.
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Sunshine77, My mother was a self employed all her working life. So she only gets a couple hundred dollars to live on. But after they diagnosed her with dementia and a few other problems, she was able to get her SS and medicare as well. She was only 59 when she got it. The other problems was to do with her bones. If she is getting medicaid now and can get the medicare also, you can find a better place for her (cleaner) and maybe some where she will like. Also maybe get her a private room of her own. Good Luck
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Sunshine77, I used to try to convince posters that they shouldn't feel guilty. Logically, rationally, you shouldn't feel guilty. But I've come to recognize that feelings don't always observe logic.

Feeling guilt pretty much goes with being a caregiver. Now I say just push the guilt to the background and try to make your decisions without considering the guilt. Do what your think is best for your children, for yourself, and for your mother (in that order). If you can't hit "best" for all three of those at once, the guilt will get activated, but ignore it and carry on.

Best wishes to you!
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I think you need constant reality checks with other caregivers as to how MUCH you've done for your mom and how much one caregiver can do for someone with (probable) dementia. She's in a place now with 3 shifts of help. You're only one person. You can't do what they can do for her and keep your health and sanity, particularly since you have four children to care for.

Your mom has made her choices in life which have consequences. She's now paying for some of those choices, unfortunately. But those aren't situations for you to fix - they're not of your making. You didn't drive the rest of the family away. Your mom did that. She's not giving you power of attorney - that's your mom's choice. You just have to let that stuff go.

Your first priorities are your own life and happiness and the happiness of your children. They come before your mom. Hang in there and come here to vent. We get it!
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Thank you for your sweet words Blannie. It means a lot. I keep telling myself I am not crazy. (well okay I am...) It is nice to know that it isn't all in my head and I just need to take a deep breath.

I guess I also feel guilty because I feel like I should be able to have her move in and take care of her. She ended up in the ASL because she had several falls and then she really overdosed on her medications. Her neighbor called me and I went over and had to call 911 - she was still responsive - but she ended up in the hospital for 2 weeks. They said she needed help. She is having moments of clarity right now....but I have seen the other end of the spectrum where she can barely talk or walk.

I know she is okay where she is...just gotta figure out how to get rid of the guilt. I am guessing that just takes time too?
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The more you write, the more I can see what a wonderful, caring daughter you are. Your daughter baking cookies and your son visiting are awesome. Your mom is SO lucky to have you still involved in her life! Step back and look at your life as if a dear friend told you everything you're telling us. What would you advise her? Then take that advice yourself!
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Captain - your post made me laugh - thank you. I know my mom complains - there have been times they have had hotdogs for dinner 3 nights during the week. That is why I keep snacks for her!
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Side note - I did some research - there are people on disability that can qualify early for medicare - however my mother didn't have enough work credits. (she was primarily a stay at home mom). She draws her disability off of my dad (her ex) and that's all she qualifies for - so not much.
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if youd complement the cooks at ednas nh theyd laugh in your face . they aint college grads but they know gruel when they see it .. i PRETEND to like it. they appreciate that ..
steamed squash today . squashed steam . i think the terms are interchangeable ..
either way i ate it and got the most dubious look from edna . we dont need words to converse , with material like that ..
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Thank you for your responses. I typically see her on Friday's - most of the time to take her to her doctor's appointments. (The facility doesn't provide for that.) She has had doctor's appts for the last 5 Fridays. I am typically gone most of the day with her. Then she wants me to take her back to my house - which I don't usually do. Friday evening I try to spend time with my kids.

I have started to try to limit the calls. I send her to voicemail. The facility has my number if there is an emergency.

I am trying to get rid of the guilt - She just got a new roommate and dislikes her. (Disliked the last one too.) She hasn't really had to share anything - so she likes her privacy and has only been in the ALF for 3 months.

It is ok - but I can tell they are understaffed - and I would certainly like to see it a little more on the clean side - but it's a very old that is part of the issue. She has her tv and there are people there if she needs something. I take her snacks (they let her keep them in her room.) So even if she doesn't eat the food - she is not going hungry.

I hate the nightly calls - her asking if she can just come stay the night with me for 1 night. I know that's not how things would work. I also hate that I don't want her around my kids. My oldest is 18 - he comes with me for visits - and that is his choice. She always favored him. (I didn't really like that she outright favored him...openly). So the others don't really care if they go see her or not. There are a lot of people with mental health issues there and I worry about the other kids going up there with me too.

I have had my 13 year old make cookies (she loves to bake) to take up to give to all the residents. (There are about 45-50 people there). So I try to be helpful and I know several of the Techs.

Guess I just need to learn to set boundaries and try not to feel so guilty. That is so easy to write....sigh.
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