Decision time for my father re: my grandmother.

[Bertha Venation]

My Grandma, Florence, will be 87 on February 19. She has dementia and Alzheimer's and has been deteriorating in the last several months, and it's finally reached the point where she can no longer live alone.

My eldest sister, Bonnie, is her main caregiver, with help from our sister Annette and Bonnie's son, Christopher. I've just learned that a couple of weeks ago, while Bonnie was at her house, Grandma tried to turn on the light above the stove by turning on the stove.

Our dad didn't know this. He doesn't see her more than once a week, while the combination of B/A/C sees her at least three times a day. Our dad's main concern is the number of times Grandma calls him in a day.

A couple of days ago, he called Bonnie and asked her to remove his phone number from the large-print list Grandma has right by her phone. That list contains three numbers: Bonnie's, dad's at work, and 911. 911 was long since blacked out due to her frequent calling them to ask what day it was and other such questions. Now, dad has asked for his number to be removed because she fills his business voice mail daily, leaving no room for customers to leave messages.

In emails exchanged between the four of us yesterday and today, our dad has revealed that he's wanted to put her in a home for years but hasn't for two reasons:

1. Selfishness. He's not sure her savings can cover it, and since the onus is on him as the eldest child, he doesn't want to have to make up the difference. (SUCK IT UP, ASSHOLE.)

2. She will be miserable. (Yes, and the alternative is that she will injure herself, wander off and get hit by a car, or burn her house down.)

Add to the mix that Annette and Bonnie have shared a home for over ten years and their combined family has far outgrown the arrangement on every level. Annette's kids are teens now and need more space; Annette needs her own home to feel like a human being. In her lucid days, Grandma said Annette should have her house someday. But dad wants to rent it out for $2k/month to defray the costs of Grandma's care, and no way can Annette afford that much.

Does anyone have any advice? This is all happening very fast, and, since I am 2,600 miles away, I feel utterly helpless.

[blondeatlast]

1. A prayer and a cyber-shoulder, but no real advice.

But I'm sure someone will have some wisdom. When my dad was diagnosed with cancer, I got marvelous advice from my DU friends.

We are here for you.

Laurel

[Bertha Venation]

6. sigh... thank you, Laurel

I think this is what I need more than anything.

[mantis49]

2. I know that deciding to place

someone in a nursing home is very difficult. From the way you describe the situation, your grandmother is a danger to herself and need full time (24 hr) supervision.

I am a nurse in a nursing home, where over half of our residents have Alzheimer's or other forms of dementia.

If her savings are used up, then people usually go on Medicaid. He wouldn't have to pay for it.

The main thing is to research and visit/ inspect prospective nursing homes. There are many resources out there, starting at the Centers for Medicare and Medicaid website: http://www.medicare.gov
There are many wonderful homes, though the press would have you believe they're all hell holes. I work in one of the wonderful ones.

It's a difficult decision to make, but sometimes the only solution.

Good luck.

[Bertha Venation]

5. Annette has found a good one:

Quaker Gardens in Stanton, CA. She & Bonnie & Dad are going there for a tour.

Thank you for the advice about medicare. I think she actually has too many assets (a house worth probably $.5M after it's fixed up, and about $200k scattered about) -- my dad is just a big fat worry wart. I want to tell him to sell his Jag, but now is not the time to be bitter.

Thanks again.

[nini]

9. I correct myself

On edit: I re-read your original post. I think I interpreted your dad's motive's incorrectly.. So, I'm gonna soften up a bit and step back. It just makes me so sad to see anyone have to even worry about this at all.

:hug: hugs to you.. I hope this all works out for grandma.

[nini]

3. Medicare should help cover some home health costs..

..or even the cost of a home for her.

You may have to do some shuffling of assets if she owes the home (I think) but it can be done without losing everything.

As far as your sister goes.. If your dad is going to want rent from her or get her out to be able to charge high rent, she should charge him some back pay for taking care of his mother all those years. I'm sure what he would have had to pay back then would be more than any free/low cost housing she got while being there.
If Grandma said she wanted your sister to have the house, I'd check into the legalities of making sure she gets it. Otherwise it sounds like dad isn't going to honor his mother's wishes.

Good Luck

[TNDemo]

7. No Medicare for Alzheimer's.

According to Medicare it is not a disease. We just went through this with my mother, grandmother and FIL (simultaneously). There was an excellent show on PBS about Alzheimer's the other night called The Forgetting. Maybe it will replay soon. Sadly it is a crisis that is already here and going to implode soon and there is no help for families out there.

[nini]

8. Even if there are other health care issues?

Good GOD!! what the hell is wrong with this f'ing country if people who CANNOT take care of themselves for no reason of their own NOT get decent care?!?!

I know the answer to this - I'm just pissed!

!%&@&@$%&@#$^

[PDittie]

12. That is correct

Long-term care (which is what this is for grandmother) is only paid for by a long-term care insurance policy (which she should have bought a minimum of ten years ago; wouldn't be eligible now) or out-of-pocket.

Medicare does not pay for LTC; Medicaid does, but one must be impoverished (typically $2K or less of assets, depending on the state) to qualify.

[WWW]

4. Hey, I feel for you

My house is so chaotic right now with three generations (my two teenagers and my crazed mother, a global home business, husband who runs it, five cats, a dying dog and a hamster) living in a log cabin in the middle of the Maine woods and not enough living space, I expect Jack Nicholson to come out of the cellar with an axe in his hands any minute..But the good news is that I GOT MY MOTHER INTO THE HEALTH CARE CIRCUS. I ranted to my mother's doctor about how I could not do it alone and am finally getting some attention. The doctor does home visits once a month, I have two therapists twice a week, a nurse twice a week and an aide once a week and volunteers from the church...All because of Community Health and Counseling. The hardest part is getting there. Contact your grammy's doctor and find out what can be done!

[PDittie]

10. I wouldn't begin to give you advice on most of your concerns

and I am not an attorney, nor am I licensed to provide advice in the area of elder plannning.

Having said that, your grandmother needs to be admitted to an intermediate care facility that is state-approved as a Medicaid provider, so that when her assets are exhausted she can qualify for her state's Medicaid program (your dad perhaps has less financial obligation than he thinks).

There's a lot of research to be done in this area; for example, her home may have to be sold to pay for her care (meaning your dad's plan to rent it is out the window, UNLESS it's previously been transferred into his name some years back). This and much more all depends on the Medicaid laws regarding asset spend-down in the state where your grandmother lives.

What does her will say about who gets her house?

Does anyone have power of attorney over her business affairs?

These types of legal instruments cannot typically be revised once she has a diagnosis of mental infirmity, so it is important to know what their status is.

Good luck. Long goodbyes are stressful even without financial constraints, and familial grudges and disagreements.

Try not to let these hard choices devastate your other relationships.

[PDittie]

11. Just read your post about her estate

Intermediate care facilities can range from $3K-$5k up to $10K or even $15K a month, depending on your part of the country and the quality of facility selected.

Medicaid probably won't come into play (unless she lives for five years or longer -- sorry, I know how that sounds).

So it sounds like the toughest thing you need to do is pick a place and take her there. Never easy and never pleasant.

Good thoughts.

[fairfaxvadem]

13. I wish you luck . my siblings and I are in the middle of this...

with our own mother. however, we did not give the oldest sibling "permission" to make all the decisions. We do it collectively. Yes, your grandmother's assets will be needed to pay for her care until she is broke then the state system kicks in. Period. If your dad and the siblings failed to move her assets to a trust or into other names, etc., then there is not going to be much choice in the matter, I'm pretty sure. But having Alzheimer's isn't going to prevent her from getting state aid when she needs it, I'm pretty sure. I've never heard of that. (on edit, i mean after you spend down the assets, we did that for a great aunt before she qualified. but some of these alzheimer's patients live a hell of a long time so it's possible to run out of cash and assets.)

My mom's house was owned free and clear and the hardest thing was to get her out of her house so we could sell it. The money is what will pay for her longterm care once we have to move her into assisted living with an Alzheimer's unit. It's her house, her money, her care. Fortunately she can manage right now in a basic retirement community.

Your dad needs to get some solid advice. Depending on what type of facility, will range from $3600 to $5000 per month or so. At least, that's what we've found.

A good family law/family estate planning lawyer is worth the money. They also practice under "elder care" in many areas and specialize in this. Also may have info on nursing homes, etc. Also, contact the Alzheimer's Association for more info.

[Widgetsfriend]

14. Let me give this a try.

I have been through this with my own mother (severe dementia; don't think she has Alzheimer's). First, Medicare doesn't cover anything except medical bills and nursing homes FOR A VERY SHORT WHILE. Medicaid in many states has provisions to cover assisted living but you cannot have assets (other than a house and car)over $2,000. So she won't qualify right now. However, she can qualify sometimes if her medical bills in a certain quarter are above a certain amount.

Here's what to do: First, contact the Office on Aging in her home state. There are usually offices at the county and state level. Tell them what's going on and tell them you need help. Ask what they can do. They usually keep lists of available homes. Next, find out what kinds of places are available. In Maryland, we have nursing homes, assisted living homes and group assisted living homes. Nursing is the most hospital-like and most expensive. Unless she has feeding tubes and other direct medical needs, Medicare will not pay for her to stay there (or if she's coming out of a hospital and can't return directly to home). Assisted livings are usually large places with care. They would be stretched to help her with feeding if she needs that, but otherwise are usually set up to deal with incontinence, wandering and most of the other problems of Alzheimer's. And most have a special unit to care for Alzheimer's sufferers (locked doors). A good place will have lots of activities and will take them out for rides and bring in entertainment and will even have pets!! A bad place will smell like urine and all the residents will be sitting around like zombies (drugs). In my opinion, the best option are group assisted living homes. They are homes in neighborhoods and are owned by individuals who hire staff to care for the residents. In this situation, your Grandmother would be living in a home like her own and her adjustment, while very difficult, is actually easier. There are usually no more than 8 residents; home-cooked meals; nice for them and easier on the consciences of the loved ones.

I've been through this all with my mother and it is the most awful and most wonderful thing a person can do. On good days, I feel great. On bad days, I'd like to open the veins. I wish you all luck.

[fairfaxvadem]

15. your note is right on...

And very much what we've found here in Virgina. Mom is in California right now but we suspect the next step will be back here and we've been looking at a lot of places.

Definitely be wary of stinky places! If it smells like a lot of lysol to cover up the odors, it's not a good sign. the alzheimer's units tend to be a tad more stuffy then the assisted living sections, but they have to keep them warm and not keep doors open, etc.

By the way, we found Maryland to have more choices of places than Virginia when we first started looking a few years ago. There are a few more choices now, but still, Maryland, as usual, seems to be way ahead of Virginia on this.

[Bertha Venation]

16. a couple of updates from today's correspondence

1. My dad has revealed that there are additional funds in cash and annuities, lightening up the future somewhat. He dreads the struggle of liquidation. I have told him I can probably get some pro bono help from some of the attorneys I work with, but he hasn't bitten. I'm sure he will if it gets dire.

2. The three of them (Annette, Bonnie, Dad) are going to visit Quaker Gardens very soon. We want her in Secured Living, which will cost $3,150 per month for semi-private or $4,800 for private. It includes any required assistance -- medication/care management, personal assistance, etc.

3. Two years ago, the daughter of Grandma's husband, Kenny, finally agreed to take him off life-support. Dad put out a feeler to see what we thought of that eventuality (her physical health is good, but we must consider everything). The collective wisdom of us granddaughters is "NO FUCKING LIFE SUPPORT." NO ONE in our family will ever live like a vegetable. This is where our dad's selfishness seems to have overpowered his religious fundamentalism: for whatever his own reasons are, he agrees w/ pulling the plug if the time comes.

4. Dad seems to be leaning toward letting Annette rent the house. Thank the goddess.

I have read all of your responses and I thank you all very much. If I don't respond individually, I hope you won't be hurt. I am taking everything into consideration, and passing on to my family the things that fit.

[blondeatlast]

21. Reason and emotion often are at odds, but if we cna make them work

together, all are better off.

Still sending prayers out to you for a merciful to all resolution. We love you--never forget that!

Keep us posted--and about "individual" replies--think of us all as being in the same room, okay?!

:hug:

[Heddi]

17. (hugs) and my story

My Great-Grandmother was about 78 or so when her kids (my grandmother & her bros & sis's) decided that she HAD to go into an assited living facility.

She had been living with the assistance of one of her sons for a number of years--he was living with her, but was mainly there to make sure that she was okay--she lived in a bad neighborhood and it was a scary thought (even many years ago when the n'hood wasn't SO bad) of her spending her days and nights alone in such a bad place.

But--it was her house, built by her husbands two hands in the 1930's. This four-room house held two adults and their 6 kids during the depression. I don't blame her for not wanting to leave and let it rot away to the hands of crack-dealers and homeless squatters.

Anyways---she had been progressively succumbing to Alzheimers for a number of years. At first, back in the mid-late 1980's, everyone attributed it to "senility" and "getting old". As medicine progressed, and "senility" was found to be an actual DISEASE (Alzh.), we were able to pay more attention to her symptoms and treat her as best as her family could.

She would have really good days, and really bad days, and eventually the bad days outnumbered the good.

My uncle would find very spoiled food in the fridge--food she was still eating off of. She would forget that it was 1994 and think it was 1944.

She began to exhibit behaviours that made us realize that she was in danger of injuring herself by being unaware of her surroundings, by being confused. The possiblity of her wandering out of the house was a scary, yet real thought. Her hygene was suffering, and sadly sometimes she wouldn't realize that she had soiled herself, or injured herself, or not bathed in a week or more.

I was the great-grandchild. I was in my late teens at the time, but I remember many family meetings, with aunts and uncles traveling from across the country so all 6 of her kids could get together and figure out what they were going to do. What they COULD do, and what was reasonable to do.

Health-wise, she was in okay health--had the normal health problems that anyone of her age would have.

But the decision came down to either having 24-hour assisted care in the house by a visiting home nurse, or putting her into a facility. The decision was very difficult. She was an independent woman. It's not easy seeing the matriarch of the family go from being a tall, strong, vocal woman to being a helpless, confused old lady.

They put her in an assisted living facility. It was a group home and a really nice place that specialized in alzheimers patients.

she was on a very limted income, and I believe that some service or another picked up the total tab of her staying there, with little or no cost to my family, but again, I was just a teen at the time and not directly involved in that aspect of this.

It was hard, but ended up being the right thing to do. Literally the day that she went in, her health went downhill and within a few months she passed away. It's hard to talk about because she was so loved, but it would have been a tremendous burden and guilt for everyone had we allowed her to stay at home and something horrible happened to her there.

At the facility, she was cared for around the clock. The staff and nurses were terrific, and understood the difficulties working with patients with Alzheimers. They were patient and caring and made it easier on US as much as they made it easier on HER.

I'm sorry that you're having to go through this. I'm sorry that ANYONE has to go through this. But look at what will be for your Grama's best interest and go with that.

I wish you the best through all of this. You have my best wishes and prayers.

heddi

[Bertha Venation]

18. thanks, heddi

We considered a live-in, but there would be so much work to do to clean and fix up the house; we all seem to distrust that a live-in could tolerate Grandma and vise versa; we SERIOUSLY doubt Grandma would understand why someone was in her house, and every time she saw the person she would, having forgotten, either scream or call for help; Annette volunteered to be the live-in years ago, but her kids are too old now; etc.

Thanks for your post.

[nini]

19. You're right about grandma not understanding why someone is in her house

When my dad was dying we were trying to take care of my step mom with alzheimers at the same time. We couldn't handle the care with our jobs so we had to get someone in - at night at first.

She was sooooo pissed someone was in her house and this poor woman who NEVER cussed threw out some choice words to this poor girl in the middle of the night. Luckily this girl was an angel and hung in there but my step mom was definitely confused at first and not happy.

Sounds like everything is falling into place from your update. Good to hear.

[Bertha Venation]

20. to clarify

"We considered a live-in, but there would be so much work to do to clean and fix up the house" --

Of course we would do this work, in a heartbeat, if we thought a live-in was a viable option. But Grandma would be just as upset about us being in her house and cleaning & fixing it up as she will be when we move her to Quaker Gardens. And that is where she would go eventually, anyway, once she drove off the live-in.

Sigh.

[bearfan454]

22. Is hospice an option ?

Sometimes Alzheimers assisted living is okay if family members take time with her also. My parents could be facing this in the next 5 - 10 years.

[Bertha Venation]

23. I'm not familiar with hospices, other than

AIDS hospices. Wasn't aware there are such places for Alzheimer's patients. Can you tell me more?

I think our collective mind is made up as to where we will place her (jesus, listen to me, it sounds so heartless), but I'd still like to learn more.

[mantis49]

26. Hospice

Hospice care is limited (as far as Medicare payment) to only persons who have 6 months or less to live, no matter what the disease. There is hospice care available for end-stage Alzheimer's, but it sounds like your mother is no where near that.

[put out]

24. Maybe you are thinking of respite care.

To relieve some of the burden on primary caretakers. Hospice, as I understand it, is for end-of-life care, 6 months or less.

[peekaloo]

25. Have someone in your family talk to the admissions

person at the facility you're looking into. Medicare usually pays the first 20-21 days of residence. Medicaid will pick up around 80-90% if the person qualifies, depending on the state. The trick to Medicaid is the person applying must have assets less than $2,000, once again depending on the state, so some of your grandmother's assets may need to be transferred to another family members name. A knowledgeable admissions person can be a godsend in assisting you on this aspect. While the family may end up paying for the first few months awaiting Medicaid approval you will be reimbursed once the program kicks in.

Hope this makes sense. Good luck and bless Grandmas' heart!

[mantis49]

27. Medicare

Medicare only pays for "skilled" services, which is too complicated to get into here. Alzheimer's in and of itself does not require the necessary skilled services for Medicare to pay, so will not pay for ANY of it.