Caring for disabled siblings

chrystaltree · ‎05-10-2010

Spent most of the yesterday visiting my sister. She's disabled but she does amazingly well. Totally independent. She's in housing for elderly/disabled. It's subsidized. She has a homemaker and PCA that the state pays for. She has transportation for the elderly and mobility challenged. She does not go out much now but we all make sure that one of us visits her every week. I started thinking when she got a phone call from her friend who was very upset and distressed. After the call, she explained that her friend is in her mid 50s and has multiple medical conditions and physical challenges and mild depression. They have known each other for many years. She has spoken about this women often over the years. They met in rehab and stayed close. She lives with her parents who are 90ish. They have always done everything for her but time is running out for them. They won't be around much longer. Whatever money they had is gone. They all live on their combined SSA benefits and some rental income. The parents held a family meeting and basically told this woman's two siblings that upon their passing, they would be responsible for their sister. She had to move in with one of them. They would leave their house to the siblings but the proceeds after the sale should be used just for their sister. The siblings are around 60. Middle class, both still working, adult children, grandkids. Apparently this family had never had this type of conversation. Ever. They were civil, nice but declined to take on the responsibility. A life changing responsibility. The word burden was used. They didn't want to think it through. Both said "no". They suggested that the parents contact a social worker or state agency to get some help or guidance. They suggested that the sister speak with her doctors and her psychiatrist. Siblings are not legally required to care for their disabled or special needs siblings in this state. Same with parents and grandparents. My sister and I wondered why they hadn't had the conversation 30 years ago. They do spend holidays as a family. They've always been on good terms. Surely the parents knew that as they aged, as their savings dwindled; they needed a plan for the daughter who was dependent on them. Ostriches. That's the word my sister used. They put their heads in the sand didn't see what they chose not to see.

Sooner · ‎03-10-2010

@chrystaltree People just don't think about it. My husband and I did this for aunts, uncles and parents from 40 on and are still doing it close to 30 years. But unless you have been there you cannot imagine the work involved, the paper work, reports, medical decisions, floods of paperwork that come to you, etc. etc.

I do not blame the siblings. Some guardian/feduciary/ power of attorney situation needs to be set up, and they do need to get help from knowledgable people. It's almost more than someone can manage at 40 and still have a life, no less at 60.

Been there done it and to be honest it comes before what one needs to do for their own life--you HAVE to do the reports, accounting for all funds, allocations to housing, clothing, etc. for them because govt. agencies are involved. Your life gets pushed back to second or third place.

My husband took the burden. I simply don't think I could have done/do it alone.

Just my experience.

lgfan · ‎10-19-2012

The parents should start looking for assisted living places for their daughter. It is unfair to burden the two siblings with the care of their sister. I do not know how people in their 90's are taking care of a daughter in her fifties. My mother is in her 90's and she would not be able to take care of me. I am taking care of her.

FiddleDeeDee · ‎03-06-2020

My response is based on this being a part of my family's history due to MD, MS and CP.

It is NOT the responsibility of the siblings or any sibling to sacrifice their life or that of their spouse/children in order to care for a sibling. No matter how many discussions you have, there is ALWAYS going to be one individual who becomes the main caregiver and that isn't fair in any way to that person. There is ALWAYS a ripple effect within that caregivers' immediate family/relationships and isn't fair to them either. The moment you have a child who you know is going to need care after you are gone, it is YOUR responsibility to set everything up so your other children to NOT bare the burden. Yes, it IS a burden. In the US we do not have a system set up for financial, physical or mental aid to those who sacrifice to take care of someone full time. If you've never actually done it, you don't understand. It angers me when parents simply assume that their other children will take care of their sibling. It's wrong on so many levels.

*Four Seasons once again*

Trinity11 · ‎11-16-2014

@chrystaltree wrote:
Spent most of the yesterday visiting my sister. She's disabled but she does amazingly well. Totally independent. She's in housing for elderly/disabled. It's subsidized. She has a homemaker and PCA that the state pays for. She has transportation for the elderly and mobility challenged. She does not go out much now but we all make sure that one of us visits her every week. I started thinking when she got a phone call from her friend who was very upset and distressed. After the call, she explained that her friend is in her mid 50s and has multiple medical conditions and physical challenges and mild depression. They have known each other for many years. She has spoken about this women often over the years. They met in rehab and stayed close. She lives with her parents who are 90ish. They have always done everything for her but time is running out for them. They won't be around much longer. Whatever money they had is gone. They all live on their combined SSA benefits and some rental income. The parents held a family meeting and basically told this woman's two siblings that upon their passing, they would be responsible for their sister. She had to move in with one of them. They would leave their house to the siblings but the proceeds after the sale should be used just for their sister. The siblings are around 60. Middle class, both still working, adult children, grandkids. Apparently this family had never had this type of conversation. Ever. They were civil, nice but declined to take on the responsibility. A life changing responsibility. The word burden was used. They didn't want to think it through. Both said "no". They suggested that the parents contact a social worker or state agency to get some help or guidance. They suggested that the sister speak with her doctors and her psychiatrist. Siblings are not legally required to care for their disabled or special needs siblings in this state. Same with parents and grandparents. My sister and I wondered why they hadn't had the conversation 30 years ago. They do spend holidays as a family. They've always been on good terms. Surely the parents knew that as they aged, as their savings dwindled; they needed a plan for the daughter who was dependent on them. Ostriches. That's the word my sister used. They put their heads in the sand didn't see what they chose not to see.

I get it. As the sole caretaker of my adoptive brother's care for twenty years, it has taken an enormous toll on my health. Heart attacks, strokes and dealing with beauracrcy to get the best care. He will probably long outlive me.

However, I would not be able to live with myself if I hadn't gotten him a place to live and get the best care. He would be homeless from a long history of alcohol and drug abuse. But that was from parents who were abusive and not his fault

KBEANS · ‎06-08-2020

Not to be harsh, but it's not their responsibility. I witnessed firsthand my SIL take her brother in a young man who had a debilitating stroke.

She redid her whole house to accommodate this brother with accessible ramps, wide doorways and a brand new accessible bathroom with all the trimmings.

She took great care of him as her entire life fell apart before everyone's eyes.

Out of control children, cheating husband and other siblings who were just fine with her dedicating her life to a brother who had not really been that close to anyone in the family for years.

She started to unravel and the brother had to be put in a nursing home anyway, after all this fanfare and dedication.

It was so unfair to both of them. After more than 20 years she continues to try to put her life back together.

He died less than a year after he went into the home.

Desert Lily · ‎06-24-2011

I wasn't sure about the purpose of the original post.

If it's for comments & opinions about strangers that we actually know nothing about, I can only say that if some of this is accurate or in the case of a "for instance" it sounds like the elderly parents (in their 90's) have loved their challenged daughter very, very much and have done what they thought was right for her and with good intentions.

They might find help and referrals from a physician for agencies that could assist.

Judgements are invalid without all the facts.

It takes a village.

lgfan · ‎10-19-2012

@Desert Lily wrote:
I wasn't sure about the purpose of the original post.
If it's for comments & opinions about strangers that we actually know nothing about, I can only say that if some of this is accurate or in the case of a "for instance" it sounds like the elderly parents (in their 90's) have loved their challenged daughter very, very much and have done what they thought was right for her and with good intentions.
They might find help and referrals from a physician for agencies that could assist.

Judgements are invalid without all the facts.

It takes a village.

Chrystaltree gave a lot of information regarding the situation. I took it as a cautionary statement to make people aware that they should not expect people to make life altering decisions without consulting them first. The parents just assumed that the siblings would take care of their sister without considering that they too have many responsibilities. I understand that the parents love their daughter but they shouldn't make assumptions that other people are ready to make the same sacrifices that they did in taking care of her.

As far as the statement it takes a village goes two siblings taking care of their sister does not constitute a village in my opinion.

Trinity11 · ‎11-16-2014

@Desert Lily wrote:
I wasn't sure about the purpose of the original post.
If it's for comments & opinions about strangers that we actually know nothing about, I can only say that if some of this is accurate or in the case of a "for instance" it sounds like the elderly parents (in their 90's) have loved their challenged daughter very, very much and have done what they thought was right for her and with good intentions.
They might find help and referrals from a physician for agencies that could assist.

Judgements are invalid without all the facts.

It takes a village.

I found my brother's physicians useless when he was hospitalized with a brain hemmhorage. He fell when he was withdrawing from drugs and alcohol. He lived with my dad. My father was going to let him live in the streets and told me it was in my lap. There was no village. The reality is people disappear.

lgfan · ‎10-19-2012

@Trinity11 wrote:
@Desert Lily wrote:
I wasn't sure about the purpose of the original post.
If it's for comments & opinions about strangers that we actually know nothing about, I can only say that if some of this is accurate or in the case of a "for instance" it sounds like the elderly parents (in their 90's) have loved their challenged daughter very, very much and have done what they thought was right for her and with good intentions.
They might find help and referrals from a physician for agencies that could assist.

Judgements are invalid without all the facts.

It takes a village.
I found my brother's physicians useless when he was hospitalized with a brain hemmhorage. He fell when he was withdrawing from drugs and alcohol. He lived with my dad. My father was going to let him live in the streets and told me it was in my lap. There was no village. The reality is people disappear.