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Re: Caregiver to 2 adult grandchildren.

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@SandraB622802 wrote:

Hello all

I will be retiring soon as I have twin autistic granddaughters and their mother who has never worked due to them needing 24 hour care is completely overwhelmed. We have checked on respite care but honestly, I am pretty sure she never was comfortable with respite while she tries to attend school and would rather have me as the caregiver. 

Before I retire, I have been making inquiries as to how receiving payments from Medicaid would effect my social payments and pension along with effecting her SSI payments for her autistic girls. All of this is so complicated and I am sure we will be able to work out the details, but until then, has anyone here on this site ever been paid as a caregiver while receiving social security benefits and medicare? 


Oh my goodness. Well let me first say that your two granddaughters are blessed with a mom and a grandmom who are there, fully there for them. 

This is a complicated situation, for sure. What i want for you is an expert who is free to your family. So, are you in touch with your local ADRC (Aging & Disability Resource Center)? There should be a social worker who can meet with you and give you guidance. Do the granddaughters have a case worker from some other agency? Ask that person for advice, or where to ask. I used to be a geriatric care manager and those folks help with this kind of complex computation, but they are not free. Still, you can find one in your area at www.aginglifecare.org and see how much it would cost for a consultation. At our agency (in DC/Maryland), the first meeting was free. Since you may be 60+, the idea of services for aging IS relevant because you shouldn't sacrifice your own retirement in the process of helping your granddaughters.

 

This article may be helpful: https://www.aarp.org/caregiving/home-care/info-2018/help-paying-for-caregiver.html   

 

Please share what you learn so others can benefit, if you have time since you must be really busy!

 

Jane

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Re: Caregiver to 2 adult grandchildren.

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Message 2 of 13

Hello all

I will be retiring soon as I have twin autistic granddaughters and their mother who has never worked due to them needing 24 hour care is completely overwhelmed. We have checked on respite care but honestly, I am pretty sure she never was comfortable with respite while she tries to attend school and would rather have me as the caregiver. 

Before I retire, I have been making inquiries as to how receiving payments from Medicaid would effect my social payments and pension along with effecting her SSI payments for her autistic girls. All of this is so complicated and I am sure we will be able to work out the details, but until then, has anyone here on this site ever been paid as a caregiver while receiving social security benefits and medicare? 

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Re: Caregiver to adult child.

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Message 3 of 13

@jt44962359 wrote:

My seemingly healthy 50 year old daughter suffered a stroke on July 27th 2018.  The stroke was caused by a tumor which turned out to be ovarian cancer.   The stroke left my darling daughter paralyzed on her left side.   It also caused her to stop eating.  She lost 30 lbs before a tube was inserted so that she could be fed by machine into her stomach.   She spent 3 months in 4 different medical institutions.   I stayed with her sleeping in her room in hospital and only leaving to sleep at home when that was no longer allowed.   I had to sell her car and put her house on the market.   She is home with me now.   She has started chemotherapy.   My life revolves around taking care of her 24/7.  She has nurmerous medical appointments every week and home health therapy.   I have finally found a home health aide company that will come and sit with her periodically when i hope  I can leave the house and go to caregivers support meeting, use my theatre season tickets, attend lectures, meet a friend for breakfast/lunch.   Due to the machine feedings I cannot leave the house for the 14 hours that it is running.   I had to cancel my own medical appointments.   I know I need to have time to myself.

 

Hi there, jt44962359, and wow

Is it just the two of you at home now? Are there other people besides the home health aide company who can join you, give you a break, visit with her? I imagine she had a full and rich life before her stroke. What a terrible thing that has happened to her; or rather, two things. I hope that her cancer is in the early stages. I hope that her brain is working pretty well despite the stroke in the right side of her brain which effects the left side of her body. I hope she got physical, occupational and speech therapy. Will she ever be able to eat by mouth again?

 

Yes you do need to take care of yourself. All of this is so unexpected and shocking: you're still establishing routines. And with chemo there are all kinds of (mis)adventures. Does she have an infection due to a low white cell count? You have to deal with so many blood draws, she feels like a pincushion.

 

I'm glad to hear you have theater tickets, and good friends. You love her deeply; she loves you back. She is lucky you're her mom. Here's one of my many hopes for you both: that you find time (make time) to keep your well-care appointments like mammograms as well as any you need as problems come up (how is your blood pressure? Have you had a flu shot and a pneumonia vaccine? Your daughter doesn't need to catch either of those infectious diseases.)  That you have the chance to bring some fun into your home as you both adjust to living together, again: funny movies? My father, after his stroke, loved the 3 stooges. Pure slapstick. He had a right brain stroke, too.

 

Thank you for adding your voice here. Please keep writing. We are here and you are welcome, so very welcome.

Jane


 

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Re: Caregiver to adult child.

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Message 4 of 13

My seemingly healthy 50 year old daughter suffered a stroke on July 27th 2018.  The stroke was caused by a tumor which turned out to be ovarian cancer.   The stroke left my darling daughter paralyzed on her left side.   It also caused her to stop eating.  She lost 30 lbs before a tube was inserted so that she could be fed by machine into her stomach.   She spent 3 months in 4 different medical institutions.   I stayed with her sleeping in her room in hospital and only leaving to sleep at home when that was no longer allowed.   I had to sell her car and put her house on the market.   She is home with me now.   She has started chemotherapy.   My life revolves around taking care of her 24/7.  She has nurmerous medical appointments every week and home health therapy.   I have finally found a home health aide company that will come and sit with her periodically when i hope  I can leave the house and go to caregivers support meeting, use my theatre season tickets, attend lectures, meet a friend for breakfast/lunch.   Due to the machine feedings I cannot leave the house for the 14 hours that it is running.   I had to cancel my own medical appointments.   I know I need to have time to myself.

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Re: Caregiver to adult child.

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Message 5 of 13

For those caregivers who've chimed in on this thread, I'm curious to know what your best source of finding resources and support were/have been?  Please share your experiences if you're inclined.  Thanks, and so nice to meet you all. 

 

Amanda

Amanda Singleton
All posts are intended to convey general information only and not to provide legal advice or opinions. The posting and viewing of the information in this community should not be construed as, and should not be relied upon for, legal or tax advice in any particular circumstance or fact situation. The information presented may not reflect the most current legal developments. An attorney should be contacted for advice on specific legal issues. Nothing written in this community is intended to create an attorney‑client relationship. An attorney-client relationship may only be established through direct attorney‑to‑client communication that is confirmed by the execution of an engagement agreement.
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Re: Caregiver to adult child.

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Message 6 of 13

He's 23.  I also have another son with mild autism who is 19.

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Re: Caregiver to adult child.

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Message 7 of 13

Dear DeirdreB220388,

How old is your child.? Nancy 

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Re: Caregiver to adult child.

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Message 8 of 13

I am a caregiver for my adult child who has downs/autism/epilepsy

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Re: Caregiver to adult child.

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Hi at3879:  I am not, but frequently have clients who caregive for adult children for a variety of reasons.  My parents-in-law were lifelong caregivers for my brother-in-law until he passed at the age of 44 in 2017.  Are you a parent caregiving for an adult child presently? 

Amanda Singleton
All posts are intended to convey general information only and not to provide legal advice or opinions. The posting and viewing of the information in this community should not be construed as, and should not be relied upon for, legal or tax advice in any particular circumstance or fact situation. The information presented may not reflect the most current legal developments. An attorney should be contacted for advice on specific legal issues. Nothing written in this community is intended to create an attorney‑client relationship. An attorney-client relationship may only be established through direct attorney‑to‑client communication that is confirmed by the execution of an engagement agreement.
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Re: Caregiver to adult child.

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Message 10 of 13

I was the caregiver for several adult children.  I ran a group home for more than 25 years. If I can help you, please let me know.. Nancy 

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