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Carol72156 Asked November 2011

How can my sister and I figure out the safest and most cost effective living arrangements for my parents?

My sister and I are co-power of attorney for my parents. I live around the corner from my folks and have been the hands on caregiver since 2008. My sister lives several hundred miles away but comes home every 6 weeks. For the most part, I have taken care of anything related to healthcare and my sister dealt with the finances.

My parents are doing well living at home and they want to continue to live at home with assistance. However, my sister recently stated it is unsafe for my parents to continue living at home. She wants to put them in a home and has actually taken measures to do so.

I do not want to contribute to a contentious situation --- I believe they have been safe and happy and I have been discussing with them what they want since my sister has taken action. How would I prove to my sister in objective terms that they are safe?

Also, she has a concern about finances and that's understandable. Is it more expensive to have caregivers in the home as opposed to assisted livingt? What is the best way to make a cost comparison.

My sister and I have always gotten along but issues dealing with my parents' care has really put a strain on our relationship. It makes me sad and it feels almost as though I'm choosing between having a sister or having parents.

EXPERT Carol Bradley Bursack, CDSGF Nov 2011
Hi Carol,
Unfortunately, aging parents come between more siblings than nearly anything else. I hope this doesn't do permanent damage to your relations with your sister. Communication with your parents as well as your sister is vital.
The cost of in-home care 24/7 will likely exceed assisted living. Also, assisted living would give your parents a lot of social options which remaining in their home may not. So much depends on how much care they need and how much they do other than sit around vegetating. If they have a social life and manage well with your help and some in-home care, that may be the best option. If they rarely do anything with their peers, they may do better getting involved with the activities in a good assisted living center. If either of them needs constant attention, then you may be looking at 24/7 in-home care of a nursing home for whoever is that sick. So, there are no clear-cut answers. Each case is different. Another thing to consider is their home’s setup – can they stay there if there is an emergency and they can’t climb stairs? Can they safely bathe?
Maybe you and your sister can compromise for a little longer. You can bring in more in-home care for more hours while you tour assisted living facilities together. Bring your parents along. They will likely complain, but many people love the safety and the activity of assisted living once they get over the mindset that their home is the only option. Others prefer to have in-home care and stay at home with company coming in. Communication with your parents and your sister is important.
Good luck - this is a bumpy road.
Carol

Carol72156 Nov 2011
After I posted this question, I began to surf the web to do some cost comparisons between home care and assisted living and nursing homes. I found this website with a map of the US and you can click on the state you live - and then click on the city or general area you live for an average cost for different kinds of care:

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Carol72156 Nov 2011
Thanks, Carol, the issue of socialization is something that I would never have thought about as a deciding factor. It needs to be figured in and it's definitely significant to a person's quality of life.

toadballet1 Nov 2011
Carol7: CarolB summed it up so well.

Here are some things to consider:
If your parents are doing relatively well in their homes, they may just need in-home care a few days a week. I hired someone to come in one or two days to do personal care, a few errands, or housework. It gave Mom someone else to interact with and me a break. (private care $15-18/hr., agency 20-25/hr)

If they are no longer able to do the ADLs (activites of daily living) a nice assisted living center may be the answer. And as Carol said, it is good for socialization. If you take this route, have a list of care items your parents will need and ask the ALF to put everything in WRITING....very important. There are several levels of care: independent (no personal care included), assisted living (personal care and med reminders included). You will pay according to their needs. I do not like the places that charge "ala carte" ...it really adds up. Mom's is one fee, all inclusive. Also, rates are negotiable. Do not tell the director how much they are able to pay...they need to set a rate then you can go from there. ($2800 - 3500/month)

They may eventually need nursing home care, but there are so many alternatives now, that offer intermediate care...and that would be my first choice. (NH=$8,000/mo)

Sounds like sis is taking the lead and not including you in the conversation. I think you both need to slow things down a bit and have a frank discussion. Get on the same page soon to avoid problems down the road.

lisa8275 Nov 2011
Please visit nursing facilities with your sister often BEFORE any decision is made....they are businesses and Medicare is cutting the mighty $$ so staff is being cut. Therefore your parents will NOT ever receive the quality care they so deserve if they are allowed to stay at home with part-time home care. Since you are around the corner, Home Health Care (Certified Nursing Assistant) can come and assist your parents every day, every other day, etc...There are ways around the insurance issues....

Carol72156 Dec 2011
Lilliput, Lisa and Carol --- thanks so much for your input and perspective on this situation. I want to have an open mind but it's difficult because I am the one that's been here on a daily basis. I'm quite aware of what's safe and what's not and have received guidance from the Visiting Nurses since Day 1.

I know that my parents are safer at home because we have gone through the rehab experience when each has gone to the hospital and then been released for pt and ot. Believe me, I have had to be vigilante when they were in rehab because of mistakes like giving Mom the wrong meds and on top of that, having such a cavalier attitude when it's pointed out to them.

I have to admit it made me angry that my sister would make a unilateral decision and get the entire household in an uproar while I was out of town.

My sister visits for a weekend every couple of months and this last time I left town for the weekend. My sister and her husband had their first experience of caregiving without anyone's support. She insisted that she did not want any caregivers at the house while she was there.

Halfway through the weekend, she announced to the caregivers and my parents that it wasn't safe for them to be at home (or consistent whatever that means). When I got back home, the caregiver couple that's been with us for 2 years were upset and my mother was in a highly agitated state with her Parkinson's symptoms far more pronounced. At least my sister's visit triggered an ongoing discussion about long term living arrangements.

I have never experienced this kind of thing with my sister and I wonder if she's having a meltdown in her own personal life and it's spilling into this arena. The other possible reason she might be off the reservation is an increase in expenses with groceries and prescriptions over the last few months. She actually insinuated that I must be buying my own groceries and medications with my parents' money --- I told her that was not the case but didn't feel like she believed me.

When I pick up prescriptions now, I send her an email to let her know what I had to get refilled for Mom and/or Dad and the cost. Their insurance is wonderful about reimbursement but you have to pay upfront when you pick up the medications.

Also I've been in contact with the VNA to have a social worker come out to discuss options with my parents. Asking a geriatric case manager to schedule an appt for us to help negotiate a solution and that way we'll have a neutral facilitator. The other thing is the cost of private caregivers and in cutting down hours it will help make home care more do-able.

Thanks again!

alwayslearning Dec 2011
You've already experienced how important your sister, and the quality of your relationship to her, can be -- how much everyone's well-being can be affected. Make the collaboration with her a priority, and make it clear that that's a priority -- instead or in addition to being mad at her for how she reacted and what happened when she suddenly had an experience of what a big overwhelming job it could be to take care of your parents, tell her you really want to know what she's thinking and you are deeply committed to working together. And mean it! Model collaboration for her even while she's freaking out. You can get through this together and everyone will be better off if you do.

Carol72156 Dec 2011
Yes, alwayslearning, I haven't yet asked Ann directly about her experience that weekend. I agree that's something I need to make perfectly clear to her --- that I am committed to working together on behalf of our folks. Fortunately we have begun speaking to each genuinely ( a little but there will be more ) instead of that nice, polite fake talk when you're angry at each other.

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