My sister and I can't agree on Mom's care. Now what?
The one thing my sister and I do agree on is that mom needs 24 hour care, but that's where it ends. We were ready to sign on the dotted line at one assisted living facility. My sister decided at the last minute that she didn't want to be rushed into the decision. In the meantime mom is bouncing back and forth between her own home and my sister's house. I help out with mom a few days a week and we have two caregivers that work approx. 20 hours a week. It's just not enough. My sister can't wrap her head around spending $3000 per month for mom's care. My mom has 20,000 in the bank and her house (which we can sell). Mom also receives her social security and I can probably get VA benefits. Sister keeps reminding me how fast $20,000 can go. Then she reminds me that mom is not a social person and won't do well in a facility. I'm willing to take that chance, but who am I. Sister has power of attorney which leaves me out of the decision. Sister doesn't want mom to have to leave her "cute little house" and thinks we could find a person who needs a place to live in exchange for mom's care. I tell her she is living in a dream world. People like that are extremely hard to find and even if you do find someone, how do you know your parent will like them? How do you know if you can trust that person? So, today, my sister wants to check out another facility. I really feel we already found the best place. Should I keep humoring my sister until she is forced to finally make a decision? I am really, really stressed. I sure I have babbled my way through this discussion, but it helps when I put my feelings into words. Thanks for reading this.
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.
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 :)
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.
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?
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?
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).
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.
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!
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?
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.
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?