My sister and I can't agree on Mom's care. Now what?

In the 70's, my grandmother declined and couldn't be left home alone, so my parents hit upon the brilliant idea of putting an ad in the paper to find some good hardworking trustworthy person who 'needed a home' in exchange for caregiving my poor old grandma! Who couldn't walk around without support, needed help with bathing, toileting, eating. Well, my parents thought, she's either sleeping all night (ha!) or sitting in front of the tv in her chair the other 10 hours a day, all she needs is a little help with walking, toileting, bathing, and food. WHAT COULD GO WRONG? Just a little help, an this fabulous caregiver had the run of the house and a small stipend, except for giving a little bit of help to the old lady.......Well, I guess they must have gone through at least half a dozen thieves, mental cases, weirdos, foreigners who didn't speak English, homeless people, and so on and so on....it was ludicrous who answered that ad! Poor grandma was so upset and confused, and she wasn't getting proper care AT ALL. There aren't very many mentally stable, honest, hard working folks drifting around out there looking for a 'home in exchange for caregiving'. (That's why there is welfare, women's shelters, and so on, one might have come down in life but is not reduced to having to live with a dementia patient in exchange for a roof over their head!) One in a million, and they would write a book or make a Lifetime movie out of the experience, lol.

If you can check out alternative adult care homes. Prices can be less expensive. Usually 6 to 8 people & seems more like home. Mother in law was in one. Also if she is getting dementia make sure they except those. Also read about VA & talk to them asap. There is several offerings on their part. Can make a difference in your final decision with your Mom.

Living in a "cute little house" is NOT exchange for care.
You will still need to pay the person that cares for her.
You will need to give the person time off. A caregiver can not work 24/7 with no relief.
There are live in caregivers but they need to be paid and they need time off.
So there will be expenses.
But caring for someone at home can be better if it can be done safely, for both the patient and the caregiver.
And caring for someone at home can be less expensive. It can also keep the patient healthier since they will be exposed less to the variety of virus and bacteria that can cause so many problems.
Caring for someone at home does have problems, you need to know what you are doing and how to prevent problems.

On a side note moving your Mom with dementia between her house and your sisters house is not good and can be very confusing. Decide on where she is going to be cared for and leave her there. If you decide to place her in Memory Care or Assisted Living do it soon. The adjustment for your Mom will be hard but it will be easier for her the earlier it is done. And she may "forget" that she has never been a social person and she may find new friends and things to do. She will be more active and engaged in a setting where she is encouraged to do things.

Another thought...Is there Adult Day Care near her? If she could go to Adult Care 3 days a week she would be engaged, you would not be paying for caregivers for that time so they could stay longer other days or add more days on to the schedule. A full day of Adult Day Care would be less expensive than the caregivers for the same length of time.

When my Dad moved into senior living they had paired him with a couple who had lived in the State that he was born and raised... thus a common interest. So every dinner he looked forward to strolling down the hall with his walker to meet up with his table mates. Same happened when he was moved to Memory Care.

My Dad was also happy when the foot doctor came to him instead of he going to the office to get his toe nails clipped. Same with getting a hair cut. And he felt like a King as the staff would vacuum, dust, clean the bathroom and kitchen.

Dad didn't attend the activities, it just wasn't his style, he was happy sitting in the sun on the sun porch reading the daily paper, or watching TV. There were the weekly/daily physical therapy. That's probably why so many residents were napping after lunch, they had such a busy morning :)

I want to second what Jeanne said about socializing. All of mom's geriatric care providers told us hat isolation increases all of the symptoms of cognitive impairment and dementia. That being " among people" was a great deterrent to further cognitive decline. Mom was never a social butterfly, but...

In her isolated suburban neighborhood ( no sidewalks, no public transport, no one home during the day), mom became anxious and a bit paranoid. Once she moved to Independent Living, and now in a nursing home ( and with proper meds, because she's got staff monitoring her), mom is at the very least watching the " floor show" called life outside her door. At IL, she participated in both Catholic and Jewish services, jewelry making and the stock market club!

The fact that your mom doesn't actively seek out socialization may have as much to do with her worries about getting to a bathroom as anything else.

If mom panics when alone, asks the same question over and over and is having difficulty with mechanical things, it is past time for a neurocognitive assessment. Getting a good read on her cognitive and reasoning skills is key is getting her the correct level of care.

I would like to comment again on "someone who's not socially oriented won't be comfortable in a facility."

Compared to what?

Before my mother went to a nursing home she sat in a chair and watched television or did crosswords all day. Why would sitting in her nh room and watching television and doing crosswords be any worse for her?

When Mom became a widow, she did things with her sister and took the bus shopping. As her mobility became worse we took her shopping and on outings. As it became still worse she'd give us a list and money and we did her shopping. At this point she was mostly watching tv, except for our visits. When she developed dementia and could no longer live alone, she moved in with my retired sister. Her mobility was considerably worse. Sis couldn't persuade her to go on outings. Even for her beloved hair appointments she'd often plead no energy.

When the dementia and mobility got still worse, Mom moved to a nursing home. She was thrilled that for her weekly hair appointment she didn't have to struggle into a coat and scarf and mittens. The stylist came to her room and wheeled down the hall. And as long as her hair looked so nice, she might as well go listen to the accordion player. She played bingo once or twice a week. She made necklaces and greeting cards and seasonal decorations. And she enjoyed flirting!

So my non social mother had a much more stimulating and active life in the nursing home than she had had for many years.

So before you dismiss a care center as unsuitable for someone who is not socially oriented, consider that 1) you might be wrong and 2) is watching television in a safe and pleasant environment really worse than watching television at home?

Thanks for the clarifications. There are some methods of adapting but just quickly I wanted to suggest Meals on Wheels. It will limit the difficulties of meal prep and provide her not only with decent meals but with a brief companionship with the people who deliver for MOW. They also provide an equally brief check-in status on her welfare, although they're not obligated to do that.

Wow....All your answers are insightful. Thank you. First, let me say that my mom is not able to navigate without the use of her walker. Then getting from the walker to fix a sandwich, go to the toilet or get into bed requires balance. She has recently fallen and hurt her knee which increases her inability to navigate. Mom's short term memory is not good. She will ask the same question a number of times and then still doesn't get it when we give her the answer multiple times. She panics when she is alone and sometimes will press her medical assist button instead of calling one of us. My sister has considered having mom move in with her. She does have plenty of room, but would have to install a chair lift in order to get mom upstairs. Mom has problems with anything mechanical and I worry that she will reject the use of the chair lift. My sister also likes to go away frequently. I have no idea how we will arrange mom's care while she is gone. Thanks again. I will be more aware of the issues involved due to all your insightful answers.

Just another observation; you and your sister agree that your mom needs 24/7 care. Have you consulted any professionals about what level of care she needs? What does her doctor say? Have you called your local Area Agency on Aging to have a " needs assessment"? You might discover that mom needs Nursing Home care, much more expensive than AL, but there would be a possibility that mom could start out as private pay and then become Medicaid eligible.

Out biggest mistake as a family was getting mom into an Assisted Living facility when she didn't need that level of assistance yet. It was a poor match and it took us a couple of weeks and a hospitalization to realize our error. In our case, a wonderful geriatric psychiatrist at the hospital assessed mom's need accurately and we were able to move forward.

There are many aspects to "24 hour care". Is it that mom wanders? Falls at night? Can't get out of bed by herself? Is anxious and scared at night?

I see something else underlying the issue of moving to a facility.

Just focusing on a few issues:

Your sister sees $20K going quickly, and she's right. She understands your mother isn't a social person and won't do well in a facility. She's probably right.

You want to get your mother into a facility where she gets care that you, your sister and outside help are now providing. You also state with regard to your mother's potential to "do well" that you're "willing to take that chance".

Two big gambling issues there: longer than 6 months financing and your mother's short and long term adaptation.

There's a mixture on the part of each of you in (a) seeing that something needs to change, there are limitations, and (b) there eventually will be financial issues.

Your sister's observation that someone who's not socially oriented won't be comfortable in a facility is insightful; that needs to be a primary consideration before you make any moves. To ignore it would be unrealistic.

On the other hand, you're feeling burnout; to ignore that would also be unrealistic.

So I answer with a question: how can the two of you address the realistic and potential issues and come to an agreement?

Your mother asked your sister to be proxy for a reason; perhaps it's because she recognizes the adaptability limitations.

And another issue as already raised is whether your mother makes her own decisions. I didn't see any indication in your original post whether her input and desires are being factored in.

If you do find a facility, how will you handle the issues of loneliness, isolation, feeling abandoned, and other feelings your mother might develop? Are you planning on spending a lot of time with her if she moves? These need to be addressed now.

I too would ask, though, what your mother's needs now that both you and your sister help, but that she also has 20 hours of outside help? What are her conditions that she currently needs full time care, and the prognosis for short and long term future? Is AL really appropriate for her now? And if not, and she requires a higher level of care, the financial projection will change.

In addition, I think you both need to focus on long term financial planning NOW, and start applying for additional funds, whether it's through the VA and/or consideration of a house sale (I'm not going to address the Medicaid implications though but they should be considered).

Your sister has every right to be concerned, You can't be too careful. Some places put up a "front" to entice a resident and family to stay at their facility, but once there, things definitely change.

Jeannegibbs

You lucked out. At many of these places,that is all the residents do, sit and watch tv, only leaving for lunch and dinner. Activities/crafts, sure for a couple hours,then back in front of the tv until dinner, then bed.

Your mother is 90, has mobility issues, and depends on you two for entertainment, shopping, etc. -- correct?

Has she come around to accept placement in assisted living?

Hiring a live-in caregiver is generally more expensive than a care center, just FYI.

It sounds like your mother may need Medicaid when her money runs out. Keep that in mind when selecting a care center. Can you find one that will accept Medicaid? Sometimes there is a requirement of private pay for a certain length of time.

My mother was not sociable, never did crafts, and fought taking a bath or shower. When she went into a nursing home she attended all events, did every craft that was offered, and happily went off to have a shower when the aide came. (Who is this woman and what have you done with our mother?!) We really expected that she'd sit and watch television all day. Boy, were we wrong!

Does one of you have healthcare proxy? That is really the role that should be deciding how mom's care should be provided, and the POA is the one who handles the financial end of the care. But those are legal technicalities and I am sure that the two of you need to come to agreement in the best interest of your mother (and then also convince mother!)

Good luck ... and keep us posted on how this progresses. We learn from each other!

FF raises an essential point. If your mother has capacity, the decision is ultimately hers.

It sounds as if your sister is feeling overwhelmed by the responsibility of being the decision maker.

And on one level that's a good thing - it shows she's taking it seriously, as she ought to, and is much better than going at the decision like a bull at a gate as others have been known to do.

But for you, it must make you want to swallow your own tongue with frustration; and meanwhile it means that your mother isn't getting the care that you and sister are agreed that she needs.

Set yourself a mental deadline, and as sister has said she doesn't want to be rushed then okay, don't rush her. Hold her hand, keep your counsel while she explores LaLa Land, and then agree vociferously when she concludes for herself that the number you both first thought of was the correct one.

She's just freaking out a bit, and wishing that reality were different from how it actually is. Forgivable - for a short period. But sympathise with how anxious sister's feeling, and do your best to be encouraging. It must be hard to keep patience with it, I know.

Has the idea of mother living at sister's house permanently come up, by the way?

aferrino, has anyone ask your Mom what she would like to do? From your profile it sounds like Mom has mobility issues and not memory issues.

Now if Mom has dementia to a point where she needs constant care, then it would be up to the POA to find her in-house care or move to senior living.

Your sister has POA. Are you the backup POA in case something happens to your sister?

Did your sister not want to sign on the dotted line because there is a clause that would make her financially responsible to pay your mom's rent in case your mom runs out of money? We sure did have to sign such a clause before moving my inlaws into independent living. Your sister may not want to be on the hook financially and that is completely understandable.

How much do you think you could get for your mom's house if you sold it?

My MIL has a neurodegenerative illness and has a caregiver help her with her activities of daily living every day and not even she has 24/7 help. 24/7 help is for when mom can no longer do anything for herself or is a danger to herself and others if left to live alone. It is expensive and your sister is right that $20,000 will be gone in no time.

What exactly is not enough about 20 hours of help per week?

Can I ask, how old is your mother and what are her diagnosis that requires 24/7 care?