An older family survival issue -

[AngieM2]

This is not our usual survival talk, but there is something happening at work to a friend of mine that is tearing her apart - and it could do the same to each of us. And she's probably as prepared as one could be for these issues.

She has a sister about 68 that is about 4 mentally. She's never lived alone, etc.
Sister is in the home she shared with her parents that is next door to the older sister of coworker S. '

In the past two years the Father died, then late last year/early this year the Mother died. Now Sister is living next door to older Sister, and Older sister is watching her and S-coworker does a lot of the running around. And all are taking care of the mentally challenged Sister.

Well, a few months ago the older sister died.

Now we have Sherry (co-worker) as the only immediate family relative left. In the area there are -in laws and nephews, etc. Sherry is now the legal guardian of Sister. Sister can be a bit willful about moving and eating and doing things as a child would be. Sometimes a bit difficult, etc.

Sherry has to work as she has the stronger job in her family, so she cannot stop to take care of sister. They have a distant cousin come in and 'sit' so rest of the family can do their lives.

The back ground is to let you know they've taken care of Sister at home all her life. They've had Powers of Atty, etc.

This week, Sister has a mild stroke and has been in the hospital for 3 days for testing etc. She is basically okay.
Sherry and family had arranged for Sister to go to rehab, then the long term nursing home (near family home) would be available.

Going from hospital to rehab got red taped out of happening. So now, Sherry has to stay with Sister for the next few days - state has to evaluate Sister to see if she really is needing to be in constant care (disability factor, I think). So, Sherry was having a break down trying to handle her job (government contracts, and subcontract issues).
Sherry was having a breakdown a few times at work today.

Now - many of us have to work at an outside job. Do you have paperwork, and family/friends lined up to help if needed if something with the family pulled you away from work, but you need work to eat and such.

I'm only posting this because the red tape of paperwork, and being prepared for these hard family issues is a different facet of being prepared - Surviving.

Something for us all to think about for the ones we all love and care for, and may be legally responsible for at some point in time.

Angie

[NCLee]

Good post Angie.

My sister (62) lives with us (64 & 65). Has lived with us since our parents passed away.

She's been on disability since well before our parents passed away. Over the years I've saved the money that wasn't needed for her care, for her in case something happens to us. However, I do worry about her future, if I pass first.

Thank you for a good post for those who already have someone in their care or who may have to do so at some point in the future.

Lee

[Terri]

I *WAS* the back up person, and now it is up to me. If something happened to me I think that my family could not cope. They just could not, and I have no back up person.

It worries me.

[unregistered29228]

My Nannie came from a family of 9 kids, all born from 1910-1922. One of the sisters (Bonnie) was born mentally disabled and lived with my great grandmother all her life. When GGM had to go to a nursing home, Bonnie lived in the same room with her. My Nannie and another sister paid the monthly fees for years, at great personal expense. GGM couldn't really be cared for at home due to being bedridden and on a lot of meds and having frequent medical crises. Then when GGM died, Bonnie stayed in the nursing home. By then most of the other siblings had died or were in their late 70s/early 80s, the nursing home charged $2,000/mo and my Nannie just couldn't afford it anymore. She ended up making Bonnie a ward of the state, just a couple years before Nannie also died. Bonnie was happy there, had friends and was a favorite with all the nurses and aides. She had some health problems, but her main issue was being about 3 years old mentally. Nannie worried about dying and leaving her alone in the world, but Bonnie lived out her days happy and "at home" there. Granted, it was a nice nursing home, and they were lucky to have it.

When I see elderly parents out someplace with an obviously disabled adult child, I often think about the worries they must have knowing their child will outlive them. With families spread all over like they are these days, people don't often have the support system they had decades ago.

[Loquisimo]

My mom, I think, worries about dying and leaving me alone. I am autistic and live on disability. I can and will work, but these things take time. In the meantime, I am reliant on parents for housing. The good news is that this isn't a forever situation, I will eventually be independent, but my mom worries about it constantly. I once met a woman who has two SEVERELY autistic daughters. Her "plan" was to live to 100. With all the autistic people around who are utterly reliant on parents and others to live, this will be a BIG problem. The most severely autistic have mental ages around 3-4 years old.

[MamaTiger]

My great grandmother had a late life baby who was born mentally retarded (not sure what the current pc term is, but that was how it was described then). She worried her whole life about what would happen to him when she died.

At that point, he was cared for by one sister who was not really financially able and so 3 other siblings paid her to care for him and those siblings visited him/etc.

That situation worked out well, but if he hadn't had 7 other siblings, it might not have.

[tiffnzacsmom]

This could have been avoided by making use of the area's social services. I know a lot of people may not like to hear this but, there are organizations like ARC out there for a reason they run mainly on donations and some county, state, federal monies. No one person can give all the care needed to a person with mental and/or physical disabilities and it is not fair to the individual to become a burden on the family. Two of my clients lived at home until their mother got too ill to care for them, their father raised their brother and all three have mental retardation. Neither set of parents had the resources to help them as much as could have been. The brother was never even taught how to use a broom until a few weeks ago when dad had to be put into a nursing home after having a stroke and had to be placed in emergency care.

I know families mean well and do the best they can but the main caregiver is burdened to the point where often they die before the disabled individual does. We are very lucky in this country to have resources for assistance before a situation becomes an emergency and there is no shame in using those resources even if it is only on a temporary basis.

As to Ginnie mentioning prior generations and families providing care, that wasn't always the case. Those with disabilities often died at very young ages so seldom outlived their parents. Also, very often those children were hidden away or sent away because most families were embarrassed or ashamed.

[AngieM2]

tiff -
the paperwork is in process to have Sister go into a local nursing home, so they are trying to take deliberate steps that are best for all involved.

Fortunately when Sister got home from the hospital Wed night, she was able to do a bit more for herself than they thought she could. (got up at night, used the wheel chair to the bathroom, back via wheelchair and back in bed. Then in morning got in wheel chair by herself and checked out the windows of the house). The family was afraid that they could not get her to the bathroom.

So, Sherry was much more relieved on Thursday. And the regular doctor that had all the admitting papers but one, already done should be back next week. The red tape was from a substitute holiday doctor that does not know the complete history and family, etc.

So, not so bad.
But we all need to be ready.

You do make some good points.
To me there must be some balance and judgment done for the total family.

Angie