I am not getting any help from family in caring for my mom. Now what? - AgingCare.com

I am not getting any help from family in caring for my mom. Now what?

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My Mom is 81 years old and two years ago was diagnosed with early onset Alzheimers. From the day of her diagnosis she went downhill at a rapid pace. In doing some research and seeing all the symptoms my mom is displaying I truly feel she has Lewy Body Dementia and not alzheimers or parkinsons with dementia. She has a tremor which has gotten progressively worse. One day she can walk and the next day she can barely move at all; and spends entire weekends in bed. She is all hunched over and when she is standing her legs give out and I have to literally hold her up. She has a walker but its very difficult for her to even use it. She occasionally yells out in her sleep; she has a blank expression on her face; very rarely smiles anymore at all. She has withdrawn socially to the point where I cannot get her to go anywhere. She has extreme anxiety over everything and depression. She was also diagnosed with orthostatic hypertension so her blood pressure will drop upon standing and she gets dizzy. She has constipation and has become impacted and I have had to get an enema to use to help her with that problem. She can have occasional incontinent bouts but its only now and then. I work full time and have an aide who comes to spend 5 hours a day with her but it is very expensive and my mom's money is really running out. I cannot afford to pay for an aide after my mom's money is gone as I am paying all the household bills and am barely getting by. I have a brother who lives out of state and only visits once a year; my sister lives five minutes and she comes once a week, twice if I am lucky to spend a half hour with my mom and she writes her bills with her but I have no one willing to stay with my mom on weekends or overnight so I can get out or go away at all. Its been three years since I have gone on a vacation. I lost friendships because I am not able to go out with my friends. I don't mind helping my mom of course but I just want to get a little relief from time to time. Since I know I will never get my family to help, does Medicare ever offer weekend help overnight or is that something that I would have to pay out of pocket for or if I were to see if I could convince my mom to go to a nursing home just for a weekend so I could get away would medicare cover that? I feel like I am going to have a nervous breakdown soon if I can't get a break from caregiving and I have no one I can ask to help me out.

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Your description does sound like LBD. Have you discussed this possibility with her doctors?

Is her anxiety and depression being treated? Dementia cannot be cured but many of the most troublesome symptoms can be greatly improved with a good treatment plan.

Medicaid would not only pay for long-term care when that time comes, but provide for limited in-home care until then.

Sounds like your next step should be to explore Medicaid. And also discuss her diagnosis and treatment plan with her doctors.

(And you are wise not to expect any help from family if you have asked them for specific help and they have turned you down.)
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Dear Blue,

I'm so sorry. I know you are doing the best you can for your mom. And it is overwhelming and exhausting being the primary caregiver of an elderly parent. Its always hard to know what to do. I would suggest trying to talk to a social worker. Try to access any community resources or something through church. There has to be someway you can get some respite care. Its is critical. Otherwise the resentment and anger will just build and build. You are an amazing daughter and I hope you can find the right balance for yourself and your mom. Thinking of you.
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Blue55, just curious if your family isn't helping is because they feel it is way pass time for your Mom to have a higher level of care at Memory Care or a nursing home?

If money is an issue, see if your Mom can qualify for Medicaid.   Medicaid will pay for nursing home care, which sounds like what Mom needs now.   Please note that 30-40% of caregivers pass away while taking care of a love one, and then what?... the patient moves into a nursing home.

You are overwhelmed, and we all know that feeling.   You get to a point you just can't do anything more.   It is time for a higher level of care.
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There is no respite care offered by Medicare.

I believe you need to be taking steps now to have mom on Medicaid. Medicaid will allow some in-home care...but, if her needs are 24/7 they will have her move to a nursing home.

You need to be proactive and seek help to get through this process now. Waiting till Mom is completely broke will not be a good plan. Call the local social services agency.
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