Advice needed.

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H

HaronM Asked June 2023

Advice needed.

I am trying to find the best solution for my parents who are 83 & 82. Both are beginning to show signs of early dementia. My father has stopped paying his bills and neither of them can manage their meds anymore. Mom struggles to cook so we are finding they are basically living on cereal.

My parents lived in FL for many years but my dad had a few falls (one off a ladder) and mom also had a fall and broke her wrist. My siblings and I thought it would be best for them to move closer to family so they moved to NY (I am in CT, 2 siblings in NY, 2 in PA, and oldest will soon be retiring to FL).

They moved up two weeks before COVID shut everything down. They met very few people in their apartment complex, couldn't go to church and were afraid to go out to grocery store. This took a pretty large toll on both of them mentally. My dad had a few falls in the apartment and struggled with the cold winter weather due to diabetes, so I found an Independent/AL community in SC last October and they were moved down by family. At first everything was great but then the wheels fell off. The food was terrible and there was not adequate staffing (community had been bought out by another larger for profit company). My dad gav his 30 day notice to leave on January 1st. This gave my siblings and I a month to find a new place for them. My sister found an apartment complex not far from her in NY but it is not geared towards seniors and there have been several issues (no heat/hot water, sewer backup in tub, etc.) My dad calls almost everyday to complain about something so we are once again on the hunt for new housing....

My dad has had two 5 day hospital stays between last Dec (got Flu A from SC senior community in the shared dining room) and this past Feb (congestive heart failure and what now may be dementia).

I am now looking at Assisted Living communities (only assistance they need at this point is with meds and cooking/cleaning) The cost has been a shock no matter where I've looked (CT, NY, FL) All seem to be at least $5k/month for the 1st person with additional fee for the 2nd.

Has anyone found a smaller style senior living community that has worked? I believe there are some that feel more like home living with nurses on site to help. At this point, my parents do not own real estate as we thought it best for them not to purchase another home after the age of 80 but now wonder if this would come against them as far as qualifying for Medicaid when their savings have run out. Hoping to find a place that would cost less than $5k for both of them if this is possible. Seems the cost of everything is skyrocketing these days!

My sister who lives closest to them currently and myself have been the primary care takers for them as far as doctor appts, grocery shopping, cleaning, managing bills, etc. but it is becoming to much to handle from a distance.

I had contacted A Place For Mom but did not have a great experience and would not recommend them. If anyone knows of another Senior Living Advisor service that could help with search, please let me know! I have tried researching online myself but never seem to get the true cost without reaching out to each individual community....and then dealing with all the phone calls, emails, etc. from thei marketing dept. I am at a loss with how to help them right now.

TY

Assisted Living Long-distance Caregiving Moving Paying for Care

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score 1 · Answer 1

HaronM, The Manor in Florence, SC has a memory care unit, and a friend of mine died there in hospice care. This was several years ago, but they probably still offer that. You should ask. It was a great place for this friend, who moved there for the continuum of care.

You might also inquire about Bethea Retirement Community, which is in the same area.

Prices in that part of SC aren't generally high for services, and it's a good place to live because of the easy climate and comparatively low cost of living.

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score 1 · Answer 2

You might want to contact Aging Network Services-- Bethesda, MD. They have a website. They are also tuned in to similar services in other places/other states.

Geriatric case managers might also be helpful.

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score 2 · Answer 3

HaronM- I understand your frustration. Your story is similar to my own. My siblings and I had to jump in when bills weren’t being paid. My mom was overwhelmed by the situation and had never paid bills so, while capable at the time, she couldn’t handle it when my dad’s dementia became more pronounced. I took over all bill paying/money management for them but insisted on them signing the respective POA’s. Many banks and financial groups have their own POA paperwork so this took some time and multiple signatures. Thankfully, we were able to accomplish this before his official diagnosis. However, if they weren’t willing to sign over POA to me, I would refuse to even attempt to do the job. It’s hard enough WITH the POA’s in place. The same goes for any healthcare. Without POA, it is nearly impossible to navigate those issues. The stress of “helping” them with healthcare and financial issues is HUGE. Finding adequate housing for them seems even worse. If I were you, I’d insist on the proper legal paperwork before doing one more thing. If this means stepping back and letting your father take charge - since he clearly sees himself capable of doing so - I think that might need to happen. I am coming from a place of having made decisions for my parents without fully comprehending or considering the impact those decisions would have on my own life. Their failure to plan + refusal to consider senior living options prompted me to make some life-altering decisions of my own. My marriage, health, and finances have been strained and none of that had to happen. I just made decisions based on fear for their well-being and feeling obligated to “fix” it for them because “no one else” would do it. In hindsight, I firmly believe that the person in need of help doesn’t get to call all of the shots. I’m willing to assist but not at my expense and not if the person being helped is being unreasonable. I’m still trying to crawl out of the hole I created. I think you and the siblings that are involved choose a place or two that works best for you and keeps them safe…but not until they sign POA’s and give someone access to their funds to pay for their care and meals. My goal in life is not to put my children in the position I’m in.

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Thank you! This seem to be the exact position we are in. I will work at getting POAs again for his finances and health. My mom cannot handle any of this as she never has and is not much further behind him in health (mental and physical). My sister who is closest to them physically has stated that she can't handle it and it does seem to be putting pressure on her and her home life (she also has MS so the added stress is not good for her!)

(3)

score 1 · Answer 4

Haron, if dad thinks he is in charge, let him be in charge. He can do whatever he can actually do with no propping up from his children.

I had to do this with my dad. It was amazing what he could accomplish without my help, even though the prior year you would have thought he was a complete mental and physical invalid.

The person(s) requiring help DO NOT get to run the show, period.

As hard as it is, dad needs to be told he doesn't get to run you all ragged because they didn't plan , well they did, failure to plan is planning to fail. Time for dad to get diagnosed and get set out of the way, if his dx warrants that.

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score 1 · Answer 5

I’ve used CarePatrol twice in my area .. it’s a franchise. Maybe there is one by you. My number one priority was to get someone local …. You need someone who can meet with you and guide you., knowing the area..

I scanned thru the replies below , your father needs to get out of his way….. . I know, my mom often did not listen to reason. But not having all legal paper work done is a disaster in the making. Is it the cost to see a lawyer ? If so pull the forms off of the internet ( I used US Legal Forms , I believe ) have them notarized at the bank . Also tell Dad you need his CC to keep them in groceries, he’s not being fair..

I wish you luck

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score 1 · Answer 6

My parents live in NYC. I think assisted living is the way to go. Find one that accepts Medicaid once they spend down their assets.

If you haven’t done so yet, find a good eldercare attorney who can counsel you.

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score 0 · Answer 7

So only 2 of the 6 siblings are involved. What good is finding your father and mother a place to live, since he can decide to end leases (and has already done so)? Why do they have to be taken to dr. appointments? Why are the 2 of you doing cleaning? Shopping?

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Yes, unfortunately, the burden has fallen primarily on two of us. Two of my other siblings visit when it suits their schedule, two oldest have been pretty hands off.
My sister who lives closest to them and found their current living situation overpromised and under delivered. She originally said she would be there every day (25 min drive each way from her house) but this quickly became two times a week, sometimes once a week. I live 1.5hrs drive away and try to get there on weekends. We have both been ordering groceries for delivery but paying ourselves since we have not been able to get a cc from them to do so. While my dad had his last hospital stay in February, they wrote in the discharge notes that he had dementia and prescribed him Memantine. Although he has not gotten a formal diagnosis yet, he has been advised by two doctors not to drive. My sister has been taking them shopping when she visits and to their Dr. appts. There is no place walkable from their complex and senior shuttle service offered in their community will not service the area they are in, only the "downtown" area.
My dad is starting to realize they need more help and seems more open to moving to a senior community, just not willing to pay $7k/month + add'l fee for 2nd resident so we are looking for a lower cost option.

(0)

score 0 · Answer 8

Best of luck finding a new place for your parents.

There are senior apartments geared toward seniors that are priced according to income.

They wouldn’t offer meals like assisted living does. They do offer shuttle buses to the grocery, pharmacy and doctor appointments.

You would have to figure out a different meal plan for them, such as hiring a cook or buying prepared meals and hiring a companion to help assist them.

I think I would prefer board and care or assisted living since they seem to be in need of more assistance.

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I have been trying to find a place that offers al la carte meal plans but this has been difficult. Sometimes they do not eat a meal and my dad doesn't want to pay for something he is not getting or that he is not happy with (food quality is very important to them since they do not typically participate in planned activities)
So far The Manor in Florence, SC is the only place that offers one meal a day for Independent Living and they would pay for others as they go. This place also offers Assisted/Memory Care and offer an onsite Senior Healthcare Center but I don't think I have found one that would keep them all the way through to end of life.

Thanks!

(1)

score 2 · Answer 9

Haron, I found that board and care homes are a cheaper option for seniors that need assistance.

My dad's would let him stay through hospice, this is an important question, no matter where they end up, because many facilities do NOT allow hospice. Meaning at the worst possible time you are looking for a facility for EOL care.

If location isn't an issue, I would look at surrounding states, this could help you find a cheaper facility that can meet their needs through death.

Good luck, it sounds like quite the circus.

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We are definitely living the circus life right now....and my dad still thinks he is the ringmaster!
Hoping to have a solution for them by end of summer! Seems CT, NJ, and NY are all about the same cost but hoping SC, GA, or FL have some better pricing options

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score 1 · Answer 10

I know they would have enough for a few years but in my dad's mind, he does not have the funds (not sure if this is a dementia thing??). He has some invested and some in savings account. I didn't realize SC would be less expensive. They were in a community in SC which had a promotion when they signed lease so total cost for 2 was less than $4k for the first year (they were not considered assisted living). Both of them have failed physically and mentally since leaving SC so whether their next move is to FL or SC, it will have to be their last!
I will look into the areas you mentioned. Thank you,

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score 0 · Answer 11

Have you made sure your parents needed legal documents are in place? A will naming an executor, POA for healthcare and financial decisions, healthcare directives or living wills? It’s vital that this is all done. Know that you’re now in the position of finding the best option for living arrangements, not the option that will bring them happiness since as age and issues pile on whatever happy was is likely over with, a sad reality. Look in lower cost areas and consider places which include options for moving to a higher level of care on the same site should the need arise. The nursing home my mother lived in had independent living apartments for seniors and assisted living apartments as well as the nursing home component. The falls will continue, they so often are the curse of the elderly. Meal and grocery delivery are great services. I wish you well in finding the right plan

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We found out about 2 years ago that there was no Will. My husband and I tried to get my father to execute one while we were doing ours at the same time...this did not happen. There are also no POAs is place. Another document we tried several times to get done. I don't know what my father is thinking at this point. I asked him what the plan was and he said he had no plan! I understand how important these documents are and the limitations when they are not in place. I've tried telling him that if these are not executed there is only so much we can help with. I guess in his mind, if something happens to him, my mother would be the beneficiary of all of his assets so there is no reason to put these in place....very frustrating!!

Do you mind me asking which state your mother was in? It would be easier to get them to move into another independent apartment knowing that help would be available as needed.

Thank you!

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score 1 · Answer 12

You may be stuck with finding a place on your own, investigating, as there are a lot of you, what's available in your particular areas. All this moving about is disruptive in and of itself with having to change doctors, and etc. It is not conducive to good mental health for anyone involved.

The price you mention is a GOOD one, and if care levels move up it will be a good deal more. My brother paid almost 5,000 for level I care 3 years ago in a nice place in Palm Springs; in my own area it would run half again as much easily.

Consider looking into a room in board and care. Less available now but often more homey and family run with only about 6-8 patients.

I think that your parents are not yet incompetent in their own decisions. That's going to be problematic in and of itself, because they are not happy with ANY of this, and as my brother said of his own ALF, good as it was, the major entertainment was to sit about and complain to one another about food and ill health.

You are in a difficult place with many different family members in different areas. Thank goodness for Zoom meetings, huh? So that's about as good as it gets, but at some point it can ALSO add to turmoil and confusion; if you are looking for happy parents at this point? Nope. Won't happen, I am thinking.

You didn't cause this situation, and you can't "fix it". There is no nirvana at the end of this path. I sure wish you good luck, and don't envy your situation at all.

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It seems the burden has fallen on two of the six kids...myself and one other sister. I've tried to keep everyone in the loop on what is going on with my parents but so far, the others have been pretty unresponsive. My husband and I reached out to an elder lawyer to get some insight on what we could do since there is no Will, POAs, DNR's, etc. in place. Other than taking guardianship (an expensive and cumbersome process) there does not seem to be much we can do.

I think that if I could find a suitable place in FL, they would be willing but it is hard without seeing it in person which would require one or more trips for myself (I think it would be too much for them at this point to travel multiple times). We are almost at our wits end!! My dad has become a constant complainer about everything!
I will continue the search in FL but so far am surprised by the cost which is almost comparable to some places in NY!

Thank you!

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score 0 · Answer 13

How much savings do they have? Is that money making money? What pension or Social Security money is available for them? Do they have a long-term care policy?

If you're checking with senior communities for them and don't want follow-up, get a burner phone from Walmart and only use that phone number.

Generally speaking, I believe that care facilities in South Carolina cost less than those in the northeast or Florida. There are nice ones in Ridgeway (Pruitt), Florence (The Manor), and Hartsville (Retreat). In Florida, there are many group homes in normal neighborhoods where patients live as a family with 24/7 care (WPB and Jupiter).

I hope you find something soon. This looks like another case of elderly who expect their children to be both ringmasters and safety nets as their health declines. So sad, and I wish you luck.

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Advice needed.

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