For background if it is nesscary or wanted.
Long story short, my mother is being asked to leave her SNF. I was wondering does anyone have experience or knowledge providing care/getting care for a LO in multiple homes? Our family is thinking of splitting the load across all of our family. We already do this on the weekends and holidays with her. That said, my family would like some kind of support. Our concerns are that we doubt medicaid would let us say my mother has seven places where she stays.
She no longer has her apartment since we had to place her, and her living alone is not an option. Is this even possible to claim my mother does not just have a single residence? We are all roughly in the same area. Just trying to brainstorm possible solutions.
We are thinking even though my mother is rude to aids when they are sole person providing care, she is never rude to them when we visit her. Our logic is she would not be rude to an HHA if they are providing care in a family member's home with family around. We just don't want to run into a situation where only one person is responsible, thus the rotation.
Thanks for the info.
I don’t have personal experience with multiple family caregivers but I’m guessing Getting Medicaid to pay for such would be a challenge.
also, it is not recommended to continually change the environment your LO is in… they just cannot adapt to such constant change of both people & environment. Then you have the cost & challenge & hassle of having multiples of everything wherever she is moved to. Please think carefully about this plan — it won’t do her dementia any good.
Better to keep her in 1 home and have a few rotating aids. Not sure why you’re so concerned about rudeness since this is a hallmark behavior for dementia & professionals are accustomed to it.
The one home aspect is
rough because that means one family is committing to 24/7 care. Currently we rotate taking her home for weekends and holidays. She has a room in all of our houses. She loves being able see all if her family and it does not put the burden on just one house hold. Reason we had to place her was because we could not in good faith maintain her safety after she nearly burned down her apartment due to forgetfulness and me taking her eyes off her for a moment.
She currently does have medcaid. My options are pretty limited because getting her placed where she is was not easy. Reason I am trying to see if people have had luck getting care for a person in multiple homes. We all live fairly close to one another, and she does well with the weekends.
I would not make this easy for them. Their social worker should be trying to find her a bed in another SNF that has a better understanding of dementia. If she is discharged home, it will be MUCH more difficult to find a bed.
Facility to facility transfers jump the waiting lists.
I will just have to make sure they do not try to medicate her while we look for a new placement.
Personally, I would tell mom to stop being rude or she WILL NOT be going any place on weekends and holidays.
Her behavior is obviously intentional and should be called out, not rewarded.
Taking her home is exactly what she intends to happen. She doesn't care how many are inconvenienced or imposed upon as long as she gets what she wants. I would not recommend rewarding this intentional rude behavior.
Dementia at this stage is not an all consuming, mass confusion for the patient, they are still able to play games and are fully able to create situations that facilitate their wants. Tough disease that requires tough love, straight talk and strong boundaries.
You will never get Medicaid to pay for enough hours for whomever she is living with that day can work full time, unless you are in a waiver state, also, getting aides to show up is a big enough challenge and changing the address would be a comedy show of incompetency, if Medicaid or the agencies they use would even buy into it.
Did the NH give her a written eviction? It is required by federal law and 30 days is required. If they have not, I would have an eyeball to eyeball talk with mom and lay down the boundaries, play nice or the state intervenes and ALL OF US are hands off. We give you what we have, which is a lot but, you need to accept where you have to be while we all are where we NEED to be.
May The Lord give you strength to do whatever it is that happens.
We are afraid to correct the behavior since that seems to create more issues with potential aggression. Last thing we want is her to become combative and defensive. Her doctors have told us correcting non physically harmful behavior is not advised. In short they told us if she is not causing physical harm let it go. Pick your battles. I know this is not a battle I will win with my mom.
The contact information of the Ombudsman should be posted prominently in the lobby of the facility. If not, ask for the information.
Your mother has civil rights. They are being violated.
I agree with ITRR that mom may be manipulating this situation to get taken "home". Unless you live in NYC, you aren't going to get 24/7 aides coverage. And I don't think she'd be safe in a private home where she would still have access to things like stoves and knives.
Yeah we will not let her move into a private home even with temporary aids. Only way she is coming home is if we can figure out a way to provide care in multiple homes.
One friend said they use the paid family care giver program. Make one resident the primary but they just tell the aids to go to different homes. This sounds extremely complicated to be honest.
I think our beat bet is like yourself and many others have stated find a place with a greater understanding of dementia.
I agree with Barb. Find her another place, then you all take turn to come and visit often. You think you all can share the load now, but the load will double or triple in the near future. By then, she doesn’t have Medicaid, or a place in a SNH anymore, it will be a lot more difficult than now.
Just something to think about...
This is simply not a good idea. As her condition worsens, she won't understand. She will grow increasingly confused abut many things in her day-to-day life. As she can no longer recognize familiar people or places, she'll become afraid. What will you do when she no longer recognizes the adult child who is picking her up from yesterday's overnight stay? When she cries, hits, accuses, wanders from that person's home in search of one of the other homes?
It may seem far fetched now, but these behaviors do develop.
The reporting to each other as she rotates from home to home would be burdensome. ("Hi Sally, just want to let you know that mom has had terrible diarrhea all night, be sure to pick up extra wipes on your way over. Tell Francine, will you?" "Francine, I didn't have time to wash mom's sweater, forgive the vomit. Talk to you soon." "What do you mean, Jim? You can't pick up mom because why? What? Can't hear you. I'll just keep her another night.")
You'd be passing her around like a football. This isn't good for any of you, especially for her.
She responds very well to the rotation we have on weekends and holidays. Also we are extremely fortunate that for the most part all of our family lives in the general area. Many of us bought homes near one another. Are homes are generally revolving doors of people.
This is also part of her long term memory back home in PR, our extended family all lives in the same gated community. So we are keeping our fingers crossed such a system will not upset her. We enjoy taking her out for the weekends and holidays. We have a very close family bond cousins are more like brothers and sisters. So we are not worried about that family dynamic.
If things come up we just convey it and we adjust. It less passing around a football and more so allowing my mom to spend time with her entire family in the state.
It is not a typical family situation if we could we would gladly take over 24/7 but realisticly life does not allow that. It is possible if we also had aids cause prior to her being placed we had no aids and it was rough to say the least.
Generally our goals are to allow her to enjoy as much as she can while we can.
The possible solution is to try meds first, then reevaluate.
It sounds like you are overdoing everything as it is. If you keep taking her out for weekends she will never adjust to her surroundings. Not my rules just how it works.
Our family loves when she is over and we wish we could do this 24/7 but our lives do not permit that possibly.
Plus visits in a SNF are depressing, we are also limited in what we can do. My mother still likes to dance, sing, play the guitar. We will not take that away from her until we have to.
If her doctors thought medication was nesscary we would but they do not feel that way.
Hopfully on Monday we will have better grasp at what the facility can and cannot do and what options are available in terms of moving her to a facility that has a better understanding of dementia.
Please come back and up date us. And thanks for referencing your previous post.
They were not exactly pleased, the social worker asked about me taking her home because I said that before. I simply told her I did not know my options then. I also confirmed that they will not be able to give my mother medication without myself and her doctors signing off on it. The I house doctors can only bypass this if she is deemed a safety risk to herself and others.
Verbal abusive does not meet the standard required to give someone medication against the directives of those in charge of her coordinating her care and advocating for her. I am her POA so they cannot override my wishes unless it is a truly harmful situation towards others.
We are also able to remove her temporarily and the facility is not allowed to prevent her from coming back if she is medically the same as she left or stable. Which was also my fear, so they cannot take her to the ER and keep her at the ER. If she is cleared to be discharged and has no medical reason to stay in the hospital the facility has to take her.
I did put more cameras in my mother's room, because I pretty much told the facility you are stuck with her until you find her a new place and if you do anything I will make a huge stink. As the ombudsman told me sometimes you have to be a Karen.
My plan is to not keep her where where she is but the family has agreed to visit her a couple of times a day until we find a better place just to make sure the staff does not treat her poorly.
Thanks for all the info.
Stand strong and no matter what, even if the send her to the ER, DO NOT TAKE HER HOME.
I really did not have an answer I just told she is my mom and I am differing to what her doctors suggest. I do feel bad, but reading the side effects of these medications just does not seem worth giving to someone because they are verbally rude.
Do you know what KIND of meds they are proposing for your mom?
I see from another one of your posts that your mom has been diagnosed with Vascular Dementia. Very, very often, folks with VaD benefit from the addition of an anti-depressant, because their brain is no longer making sufficient amounts of the chemicals that keep most of us on an even keel emotionally.
I was thrilled to have my mom started on an AD post stroke with VaD. She was not "drugged" in any sense, just a better version of herself.
Something to consider.
Not my cup of tea personally and her doctors do not like that approach either. The fact she is picking and choosing who she is reacting to means she is doing it willfully or something about the staff triggers a response.
But since she has dementia, there is NO logic. At least, there was no discernable logic underlying my mom's weeping and walking that she hasn't paid the IRS (in 1937, when she would have been 14 years old).
Psychopharmacology IS something of a "try it and see what works" sort of affair right now. I am told that there is now genetic testing that will give an indication of what AD meds will and will not work.
Would you have to sign a blanket permission for any and all psych meds?
Or would it be possible to agree to an antidepressant to see if it changes anything?
That was early on things may change. That said might be a bad call on my part but way I see it is if my mom can be civil and polite with family, friends, residents, strangers outside when we go then it is something about the aides.
If they said let us try something for a couple of months and see what happens, if nothing happens we will back off. I will ask that question, though way they are spoke about it they want to try until something works. They did suggest even trying a low dosage drug that has a sedative like effect. Nothing crazy just to smooth out the edges.
I will discuss it with her doctors if they feel AD have minimal risk I will propose they can try only AD and that is it. If nothing changes so be it. It is just weird how she is only like this with non family caregivers.