topic Re: Caring for disabled siblings in Among Friends

Caring for disabled siblings

chrystaltree — Fri, 11 Aug 2023 14:28:37 GMT

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.

Re: Caring for disabled siblings

Sooner — Fri, 11 Aug 2023 14:50:44 GMT

@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.

Re: Caring for disabled siblings

lgfan — Fri, 11 Aug 2023 14:51:58 GMT

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.

Re: Caring for disabled siblings

FiddleDeeDee — Fri, 11 Aug 2023 15:06:20 GMT

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.

Re: Caring for disabled siblings

Trinity11 — Fri, 11 Aug 2023 15:12:30 GMT

@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

Re: Caring for disabled siblings

KBEANS — Fri, 11 Aug 2023 15:16:22 GMT

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.

Re: Caring for disabled siblings

Desert Lily — Fri, 11 Aug 2023 15:32:02 GMT

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.

Re: Caring for disabled siblings

lgfan — Fri, 11 Aug 2023 16:05:10 GMT

@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.

Re: Caring for disabled siblings

Trinity11 — Fri, 11 Aug 2023 15:45:13 GMT

@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.

Re: Caring for disabled siblings

lgfan — Fri, 11 Aug 2023 15:47:30 GMT

@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.

My point exactly. There is no village.

Re: Caring for disabled siblings

Imaoldhippie — Fri, 11 Aug 2023 15:56:39 GMT

The "wondering why conversation" is moot now. They did not have the conversation.

IMO it would benefit all concerned to have the sister put in a home where she can get constant care. Since the siblings are still working they would have to endure the expense of home care. They are aging also.

Re: Caring for disabled siblings

Puzzle Piece — Fri, 11 Aug 2023 16:09:54 GMT

My husband cares for me and I'm blessed that he does. I wouldn't want my siblings or his to do it.

In fact, the siblings want us to care after them. No way. They just want money and fake anything to try to get some out of others.

Re: Caring for disabled siblings

NicksmomESQ — Fri, 11 Aug 2023 16:28:23 GMT

I have a friend with 2 adult children. She's divorced from their father & is remarried to my husband's friend for about 15 years.Her son has all sorts of physical & mental problems. He's autistic.His father isn't in the picture. He left when the children were little because he didn't want to deal with the son's issues.

This son is now 40 years old & lives with his mom & stepdad,who care for him. It's been a challenge because he can't work & has gotten into trouble over the years, hacking into personal things he shouldn't be getting into into. Attorney fees have been constant, to keep him out of jail. They had to take away his laptop & have theirs under lock & key.

They have developed some serious health problems. They're in their mid 70's. When she mentioned her son recently,I asked her if she made arrangements for his care, if anything should happen to her or her husband. She said she expects her married daughter to care for him. To insure that, she worded her will in a way where she only gets her inheritance ,if she takes her brother in.The daughter knows nothing about this. She has 2 little kids & a job!!

I tried to tell her that was unfair & she needed to make arrangements for her son now. Maybe ease him into a group home while she can help him adjust.She told me that's what her husband wants too, but she refuses to do it.I tried to tell her that she's going to ruin her daughter's life.She refused to hear it.

All I can do is mind my own business.I know that this isn't going to end well.

Re: Caring for disabled siblings

tends2dogs — Fri, 11 Aug 2023 16:46:22 GMT

@NicksmomESQ Your friend is so selfish to heap this burden onto her daughter........a working woman with children no less. If she has a husband, this is a divorce waiting to happen. Your friend needs to listen to her husband. She needs to have a sit down talk with her daughter. I hope your friend's husband tells his stepdaughter.

I can't imagine having to "handle" a 40 year old disabled, criminally minded man. I wouldn't want to leave him alone in my home, especially with young children.

I would forgo the inheritance. A shame. This will taint her memory of her mother.

Re: Caring for disabled siblings

Mom2Dogs — Fri, 11 Aug 2023 17:27:51 GMT

I have an older sister about 76 years old...she has always been different. I don't know of any medical diagnosis except she is very good at alienating her children and siblings.

She has trouble holding a job, and she has two different degrees that would have allowed her to have a good income.

She cannot work with others so now she does private home care, currently she is with a family as their 'nanny'. I won't go into details but one daughter has already told her she cannot live with her and her family.

I was always worried that she would ask to either live with me or would move to my small town...I have no desire to have to care for her...Harsh, maybe but family dynamics is difficult for others to understand unless they have walked in the same shoes.

Re: Caring for disabled siblings

FiddleDeeDee — Fri, 11 Aug 2023 18:32:05 GMT

@NicksmomESQ @tends2dogs money/inheritance is the carrot that is dangled when wanting to force a child into something you know FULL WELL they DO NOT WANT TO DO. It's selfish, it's cruel, it's ethically and morally wrong. Personally? I wish it were illegal because that would change many things in a situation like this.

Re: Caring for disabled siblings

moonandthestars — Fri, 11 Aug 2023 19:50:09 GMT

I'm guessing the parents just assumed that family takes care of family. More of an old fashioned assumption. At least they think that the proceeds from the house will finance caring for the sister so they had that thought out to some extent. I can understand the other children not wanting to take on this burden, but personally I would have been happier to hear that they would be helping the parents research and come up with "the plan".

Re: Caring for disabled siblings

Sooner — Fri, 11 Aug 2023 20:48:36 GMT

I cannot state this often enough: ANYONE facing a situation like the ones above needs to see an attorney who specializes in this ASAP. You need to know what your financial obligations--if any are and what is entailed if you decide to take this on.

Financial decisions and actions must be taken farther out than 5 years before something happens or it could bankrupt you or take everything you inherit if you are an heir and wills and trusts state certain things. You can really be left hanging. Understand what is coming down the road.

Re: Caring for disabled siblings

Shanus — Fri, 11 Aug 2023 21:04:36 GMT

@KBEANS I think her heart was in the right place, but she did take it over the top.

Re: Caring for disabled siblings

Cakers3 — Fri, 11 Aug 2023 22:23:29 GMT

@chrystaltree Unfortunately you are right about no legal obligation for your siblings.

First your parents house needs to be put into trust for the care of your sister. The siblings are not entitled to anything despite what they may believe.

There should be a Medical Power of Attorney and an Advanced Directive for your sister. Actually your parents should have the same. They are not easy to do emotionally, believe me, but very important.

Obviously legal care advice is needed here and it looks as though you may be the one to initiate the process. There are options for financial considerations as well as housing and medical care.

It's important to have everything done for the care of your sister. She is the only person who matters.

This will not be easy but you are a strong person. I am sending you hope and care that this situation will be a benefit for her and piece of mind for you and your parents.

💐