All I can tell you is that it is very hard. My friend who cares for her sister who is 51 is exhausted. I don’t know where she finds her energy to accomplish what she does.
My friend is single with no kids. She has a full time job. Her sister has Down’s syndrome, dementia and in a wheelchair.
If she did not have hospice workers coming to the house she would not be able to manage. Occasionally some of her siblings will visit. She has several sisters and one brother. Only one other sister is single. The rest are married with kids. Her parents have been dead for years.
My friend adores her younger sister. Her hospice workers are fantastic. They help so much. She would never consider placing her anywhere. I don’t know how she gets everything done. She has a demanding job.
I was at her house for her sister’s 50th birthday party. She had at least 100 guests at her home. Everything went off without a hitch.
I suppose it takes a special person to be able to carry it off. My friend’s mom was an incredible woman. Her dad too. They did many, many things for special needs individuals.
When she was younger when her mom was alive she and her mom would take her sister and several other young people with Downs on bus trips all over, sometimes DisneyWorld, DollyWood, etc.
These people are exceptional though. I have been friends with her for many years. She will tell anyone that her sister is her world. She is amazing. I do think her job gives her balance.
She hires additional caregivers when the hospice workers are off duty. She is smart and takes breaks on a regular basis. I hardly ever hear her complain. She does say that she will miss her sister terribly when she dies.
She tells me the lifespan is shorter for those with Downs and that dementia isn’t uncommon. Her sister requires lots of care. Thank God for hospice.
I don’t think I could ever manage in her situation. It’s not for everyone. Her siblings wouldn’t have the temperament to do what she does.
They wouldn’t want to and it wouldn’t be practical for them. She is glad when they visit except for her one sister who thinks dementia can be treated with supplements.
Your sibling needs a village. It’s unrealistic to expect the family to carry this kind of burden. You would each have to spend a week at the house with this sibling, in addition to bringing in caregivers? That’s not sustainable in the long run. It’s asking a lot of the other siblings. And their families (assume some or all are married and or have children). I agree with isthisreallyreal that you need to look into moving your sibling in to a nice facility. It sounds like you have too much in your plate to even think about bringing this sibling to live with you.
By family home, do you mean a home that was owned by the elderly parent and willed to all siblings? Have you discussed with them, that some may want to sell? Some siblings may have their own kids starting college and need the money.
Honestly, what you are describing is an awful lot to ask of anyone and it is unfair to put them in this position. I wouldn't do it.
If money is not an issue then I would find a nice facility that has all the care requirements and activities that could give your sibling a life that is their own.
I can't imagine feeling beholden to my family for providing care to me, especially if I have the money to not place them in that position.
I am sure that this is a pretty scary time and transition, but if done correctly the family will be a family and visit and provide some moral support. Unfortunately this is something that your sibling is going to have to overcome, your parents are gone and your siblings will not be able to fill that void.
Find facilities that have good patient to aid ratios, and look for one that has younger residents. Don't put your siblings in the position to be your caregiver, it is not fair.
to provide a bit more info, is triplegic, who has lived with the parents for sometime both for physical and emotional support. Good news is money is not an issue, the lack of planning is... since no one wants to discuss less than ideal choices 1) stay in family home with 24/7 caregivers and siblings taking shifts (it’s within driving distance, if we cover a week at a time.. but getting commitment will be challenging), 2) Bringing sibling to live with us (but has complications due other caregiving responsibilities for other parents and grandchild with needs, full time jobs and 3) facility (AL, board and care)
I really don't think that you can do this. But one way to find out is to get all the siblings together and ask them if they have thought about this, would they like to discuss this, have they any ideas about this. Do you live close to one another? Do you live in circumstances that would allow for this duty/choice to be shared? How does the sibling feel about it? Have the parents made plans in will or trust for funds to help? So many questions.
Sadly, everything usually falls in the lap of one person. If others don’t want to pitch in they are not going to help in any form, financially or otherwise.
You can make requests. They may turn you down. Do you want help in the form of sitting, or help to pay a sitter? Help with them bringing a dinner over once a week? Cleaning?
Make your needs known if you like but be prepared for excuses if they choose not to. Then, you are on your own unless you hire people to help.
My friend who has a younger sister with Down’s syndrome and dementia doesn’t receive help from siblings. She did get hospice. She has her hands full. She works full time. The sitters stay while she is at work. It’s hard. I hope that you receive help soon.
First, accept that the other siblings have no legal obligation to support the disabled one. It is good that you want to help, but you cannot make others. Second, if you have not done so already, look for what government aid the disabled one is eligible for, so that the total cost can be reduced.
I don't think that you can. They either want to help or they don't.
If your sibling is disabled they would be eligible for assistance and that is the route I would pursue. Do everything possible to get them independent from the siblings, that is really the most stable plan.
My friend is single with no kids. She has a full time job. Her sister has Down’s syndrome, dementia and in a wheelchair.
If she did not have hospice workers coming to the house she would not be able to manage. Occasionally some of her siblings will visit. She has several sisters and one brother. Only one other sister is single. The rest are married with kids. Her parents have been dead for years.
My friend adores her younger sister. Her hospice workers are fantastic. They help so much. She would never consider placing her anywhere. I don’t know how she gets everything done. She has a demanding job.
I was at her house for her sister’s 50th birthday party. She had at least 100 guests at her home. Everything went off without a hitch.
I suppose it takes a special person to be able to carry it off. My friend’s mom was an incredible woman. Her dad too. They did many, many things for special needs individuals.
When she was younger when her mom was alive she and her mom would take her sister and several other young people with Downs on bus trips all over, sometimes DisneyWorld, DollyWood, etc.
These people are exceptional though. I have been friends with her for many years. She will tell anyone that her sister is her world. She is amazing. I do think her job gives her balance.
She hires additional caregivers when the hospice workers are off duty. She is smart and takes breaks on a regular basis. I hardly ever hear her complain. She does say that she will miss her sister terribly when she dies.
She tells me the lifespan is shorter for those with Downs and that dementia isn’t uncommon. Her sister requires lots of care. Thank God for hospice.
I don’t think I could ever manage in her situation. It’s not for everyone. Her siblings wouldn’t have the temperament to do what she does.
They wouldn’t want to and it wouldn’t be practical for them. She is glad when they visit except for her one sister who thinks dementia can be treated with supplements.
If money is not an issue then I would find a nice facility that has all the care requirements and activities that could give your sibling a life that is their own.
I can't imagine feeling beholden to my family for providing care to me, especially if I have the money to not place them in that position.
I am sure that this is a pretty scary time and transition, but if done correctly the family will be a family and visit and provide some moral support. Unfortunately this is something that your sibling is going to have to overcome, your parents are gone and your siblings will not be able to fill that void.
Find facilities that have good patient to aid ratios, and look for one that has younger residents. Don't put your siblings in the position to be your caregiver, it is not fair.
You can make requests. They may turn you down. Do you want help in the form of sitting, or help to pay a sitter? Help with them bringing a dinner over once a week? Cleaning?
Make your needs known if you like but be prepared for excuses if they choose not to. Then, you are on your own unless you hire people to help.
My friend who has a younger sister with Down’s syndrome and dementia doesn’t receive help from siblings. She did get hospice. She has her hands full. She works full time. The sitters stay while she is at work. It’s hard. I hope that you receive help soon.
I have a disabled nephew that I have been able to find resources for.
Is the disabled person on Social Security disability? Supplemental Income (SSI)? Medicaid and Medicare? Do they get any services? Daycare?
If your sibling is disabled they would be eligible for assistance and that is the route I would pursue. Do everything possible to get them independent from the siblings, that is really the most stable plan.