Caring for disabled siblings - Page 3

Desert Lily · ‎06-24-2011

@lgfan& The original post is 3rd-hand talk. The OP is not part of the family discussed in it. No one knows 1st hand facts about family relationships unless they're part of that family.

It does take a village: neighbors, doctors, teachers, family, etc.

RedTop · ‎09-01-2010

@Cakers3

OP's post is not about her sister, or family.

Sooner · ‎03-10-2010

@Desert Lily wrote:
@lgfan& The original post is 3rd-hand talk. The OP is not part of the family discussed in it. No one knows 1st hand facts about family relationships unless they're part of that family.

It does take a village: neighbors, doctors, teachers, family, etc.

@Desert Lily Not everyone has a village. Not everyone lives nearby. I've got me and my husband, and we don't live near.

Desert Lily · ‎06-24-2011

@Sooner I bet you've had or have a village without realizing it.

I was a single mom, but I didn't bring up my child completely alone: teachers influenced & taught academics to my child, pediatricians kept my child healthy, when I needed a babysitter my parents were there, etc.

When my parents died my friends & extended family were there, when I'm ill doctors are there, nurses & hospice caretakers were there for my husband/parents/BFF, various agencies are there to help people.

When I was growing up, I spent a lot time with my grandparents - they were part of my early village.

lgfan · ‎10-19-2012

I agree with you Sooner. Not everyone has a village.

LuvSoCal · ‎07-18-2010

@Trinity11 wrote:
@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

@Trinity11 I can totally relate to your post and situation. My only sibling, a younger sister, has suffered from mental illness since her teens. Prior to that we were close and had many good times together. Her condition was so bad that it caused my parents to divorce. My mother was dedicated to her until she was diagnosed with cancer at 80 (cared for my sister at home) at which point we had to put her in a group home so I could focus on helping my mom until her passing.

That was 2011 and for the next 10 yrs. I tried my best to be there for her. I spent a lot of my time, energy and $ to assist her with her daily/weekly/monthly needs. Even on medication she is extremely manipulative, mean and abusive. My health was being negatively affected and I finally made the decision in 2021 to step away. It makes me so sad because before she got sick she had it all. She was physically beautiful, smart and had a great sense of humor. Now, she's just a shell of her former self.

She has been under conservatorship for years and I don't see that ever changing. It keeps me awake some nights. I would give just about anything for things to be different.

I apologize for making this such a long post. I'm so sorry that your adoptive parents weren't more nurturing and that your brother's life turned out as it did. I sincerely hope your health issues are under control.

Lilysmom1 · ‎11-08-2020

As we age I see this happening more and more. I am married with no children. I expect to look after myself. I don't expect siblings to look out for me or care for me in the event of disability or illness. I am fortunate to be financially able to do this.

I have a sister who is widowed and has a useless son who only shows up with his hand out. She has just been diagnosed with a serious condition. She expects her siblings to look after her. I don't see it happening. We are all aging and facing our own challenges. I see a rough road ahead. She is financially able to set herself up for care.

The parents here have placed an unreasonable burden on the siblings in my opinion.

Mom2Dogs · ‎03-09-2010

@Lilysmom1 Like you married no children (2 step daughters).

I expect to look after myself, and it is on my mind a lot lately. I am 17 years younger than my husband. He is in great health and in his 80's but none the less I find myself wondering what will life be without him and no other family around me....

My one sibling I am in contact with is also older than I am and lives 15 hours away from me. I have two good friends and they would help in a heart beat if I asked, but do not want to do that...when the time is right, I will make necessary arrangements..hoping money holds out as planned.

What a mean thing for the parents of the child in the original post to do to their child -

CalminHeart · ‎03-09-2010

@chrystaltree wrote:

I feel for the sisters. There is absolutely no reason the disabled sister has to move in with them. That's too much to ask. I know from firsthand experience.

However, the sisters have to take ownership of her care. They need to find a facility where she can thrive and others can take care of daily needs. Medicaid is an option if the sister doesn't have any assets/cash exceeding $2000.

My sisters and I have always been very close. One had a massive stroke at age 52. I became her conservator after our parents couldn't do it anymore.

My sister thinks she's like she was before her stroke (she's not) and was extremely abusive. She fought everything and was beyond cruel. You'd be shocked if I gave details.

While I was her conservator, she begged to live with me instead of in assisted living. But I knew her abuse would continue no matter where she lived while I was her conservator. I don't have to take it. I certainly don't need that in my home.

Two of our siblings and I went to court about 18 months ago and had a 3rd party conservator assigned to her. I can't tell you how much better it is for everyone in our family.

Sadly, though, my sister's relationship with my other sister, a couple other siblings, and me is not close like it used to be. She did a lot of damage and some are still recovering.

Sooner · ‎03-10-2010

@Desert Lily wrote:
@Sooner I bet you've had or have a village without realizing it.

I was a single mom, but I didn't bring up my child completely alone: teachers influenced & taught academics to my child, pediatricians kept my child healthy, when I needed a babysitter my parents were there, etc.

When my parents died my friends & extended family were there, when I'm ill doctors are there, nurses & hospice caretakers were there for my husband/parents/BFF, various agencies are there to help people.

When I was growing up, I spent a lot time with my grandparents - they were part of my early village.

@Desert Lily NO. I did not/do not have a village. I am an only child raised by much older parents and brought up as an adult not a kid. My father and mother's generation is gone. I have two cousins left but do not live near and they are older.

My husband has a small family and they are distant and not helpful to begin with. We are retired and friends and co-workers are dead or moved away. We were the youngest in both our work environments.

We attend church regularly and have done so online after Covid--and don't know the people there really. And the fact is that there are lots of people like us. We've cared for and managed so many relatives because we were the only ones left.

I quit posting about this when people are so excited about older people having kids. They beat me up because I mention this is what the kids are in for. And I get "but they have money." So what?