How much help to offer (different circumstances)

iVillage Member
Registered: 11-24-1997
How much help to offer (different circumstances)
Thu, 10-25-2012 - 9:25pm

I was reading replies to previous post & would like to know how you would handle this family issue. 

My husband - 63; Me - 58, my sister - 56, my Mom - 88 & our kids - 28 & 24.  The issue is my sister has Tourette's Syndrome (ticks) & is ADHD.  This is MY diagnosis since my parents never had my sister diagnosed professionally & my Mom was always in denial.  Currently at 88 yrs., my Mom is relatively healthy and she worked F/T until 80, so she is retired.  My sister lives with my Mom & she is unemployed.  Always had trouble keeping a job or finding employment & of course, the recession didn't help.  Also my sister never married & has no kids.  My stepfather who died in 1986 worked on Wall St. & my Mom & sister are living off his savings, Social Security & the sale of our family home on Long Island.  Currently they live in a small 2 bedroom apartment which my Mom paid in cash from the sale of the house. 

At this point in time, I don't have to worry much - my husband & I are both working & we're enjoying our new home purchase.  My concern is what happens when my Mom dies.  We know there won't be much money left from her estate & I'm not looking to inherit much.  My Mom's will states specifically that her apartment must be sold & the funds from the sale be split between my sister, me & my 2 kids (her only grandkids).  My daughter told me privately she thinks my sister should move into a type of nursing home / assisted living home.  I would agree but these places cost a lot of money & my Mom's estate will not cover it.  My sister had been on welfare & is covered by Medicaid (I think). 

Currently my sister is enrolled in a local college trying to obtain a bachelor's degree.  I'm being realistic & given the current unemployment & economy, I don't see many opportunities for an almost 60 yr. old with a recent college degree esp. if you have ticks & don't have a trackable employment history.  I have told my Mom a few times that upon her death - 1) I am having my sister professionally diagnosed and 2) I am not going to be responsible for her incl. financing anything for her.  I feel that my husband & I need to take care of ourselves incl. financing our retirement and our son has $68,000. of student loan debt which we are helping to pay for.

So does anybody have suggestions on what my sister could do or where she could live upon my mother's death (whenever that may happen).  I'm very fortunate my Mom is in average health at 88 yrs., but I'm realistic - you don't stay healthy forever.    Thanks for any advice you have.


Avatar for nora_mcl
iVillage Member
Registered: 10-30-2011
Fri, 10-26-2012 - 8:47pm

HI Kathy-well, I can only tell you from a Canadian's perspective, though I can't imagine the rules are terribly different there. And we have gone through so many legal ramifications for our handicapped (adult)son.

I think the first thing you need to do is to discuss things with your mother & your sister. And then you need to get Power of Attorney for your sister. It means little as long as she is healthy & able to continue living with your mother. But given your Mother's age, I think you need to present it as having to have the legal responsibility for decisions that must be made if she cannot make her own. I don't know if your  mother has PoA for her already-or even if you & your dh have it for each other. I'm not lawyer-but it is something you need to discuss with your lawyer.

There are group homes here-for people with varying abilities & disabilities. And perhaps you can look into something that would allow your sister to live with another person when the time comes-even if it is presented as a person who requires her help, when in fact the 2 of them will cut down the costs & manage to help one another. I know that some of the lesser disabled in Adam's program either live on their own in apartments-with close supervision by staff-or live with another person. But you may have to investigate all this according to the New York laws.

If she truly has Turettes (& I'm not doubting you)-perhaps there is some regime of drugs to reduce the tics-I know little about this syndrome, so don't know if the meds for it might exacerbate the ADHD. But you will probably need a definitive diagnosis-& I'm not sure how you can get her to the doctor to get this. But I do think you need PoA to begin with, & you need to have Social Services to make you aware of what your options are for your sister.

I am finding that as Adam ages-the options are becoming more & more complex. We did get PoA in order to make the decisions for him, about his health & anything else that might come up. I feel very 'posh' to say that "OUR lawyer" helped us figure out what was needed (we used him for our own will)-& he & his staff have been excellent & totally reasonable with his advice & fees. I hope you find one as good there!

Good Luck with this-Nora

Avatar for elc11
Community Leader
Registered: 06-16-1998
Sat, 10-27-2012 - 1:18pm

Kathy, as Nora stated it is pretty complex and I imagine that much depends on the degree of disability that your sister has...if she IS capable of managing basic living skills on her own or if she absolutely requires oversight. Has she worked enough as an adult to qualify for Social Security benefits at 67yo (or what ever age they will start for her), is she disabled enough to qualify for SSI, etc. I wonder if there is an agency that could help you to explore the possibilities? I have heard that it often requires an attorney to help one get SSI and even then it takes a couple of years. So it makes the most sense to start some process now so that things might be in place by the time your mother's situation changes. And a diagnosis would be required...which I realize that your mother doesn't want to allow... a complicated problem indeed.

As for where she could live, there are probably situations for group living, there are Section 8 adult apartment buildings, there are probably some other options but it likely requires "getting in the loop" with some social services agency(s) that know the possibilities available, again depending on the degree of oversight that she requires. Are you willing and able to provide physical help if not financial help? 

Have you been able to have a serious conversation privately with your mother about what is going to happen to sister? Just wondering, does your mother have long-term care insurance? Does she think about how an illness that requires her to have a high level of care could wipe out the inheritance (or is it somehow protected?) and leave a different situation for everybody?

Sorry I don't have many suggestions. I will be interested to hear how this issue can be resolved.

Avatar for deenow17
iVillage Member
Registered: 10-12-2004
Sun, 10-28-2012 - 12:36pm
Kathy, I'm sorry that I don't have any advice for you as it's not a situation that I have dealt with but based on the other notes, I would agree that you need to get legal help plus investigate what the social services support would be. Your sister is old enough to enter a retirement home but they cost money & sounds like your sister may not have enough. I know it is hard for us to talk with our parents when they are being "stubborn" but is there someone your mother respects like a dr, minister, etc. that could try to get her to understand that testing now is in your sister's best interests? I have a cousin who is 57 & has never not lived with first her parents, then after her Dad died, her Mom alone. My aunt is 88 & her health has failed this last yr. My cousin has worked but never cared for herself by doing laundry, ironing, cooking, cooking, etc.. My aunt is now no longer doing this & my cousin had to retire as she couldn't handle the stress of running a household plus working. We are worried about how she will handle things when her Mom dies as she has few friends & she & her sister aren't close. My cousin does not a any handicap except for this lifestyle that allowed her to be totally taken care of for 56 yrs. It's interesting that she is the middle of 3 kids with the eldest passing away 20 yrs ago but had lived in special homes due to CP for 90% of his life & her younger sister who left home at 18 but maintained a normal relationship with her parents. Dee