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My mom turned 90 last year. Without going into too much detail, she has been living on her own until last June when she fell in her home, and was on the floor overnight by herself as she couldn’t get up to call for help. (Since then, we’ve gotten her a first alert button, which took a while for her to want to wear, but she is now.).
Anyway, she was taken to the hospital and then rehab for 2 months.


She has congestive heart failure plus more heart conditions, on warfarin for blood clots, cannot hear, cannot walk without a walker, etc. (she also had many UTI’s, with us thinking dementia, but that finally got cleared up.)


When she came home from rehab, we were told she could then not be left alone anymore.
The siblings set up a schedule to rotate her daily and overnight care. Some doing a bit more than others as some are retired, have spouses to help at home, daughters to help out, too, etc. Each sib is doing what they can to help out, and all are dedicated to helping where they can. BUT, it will be getting close to a year of this and everyone is or has already burned out, fighting going on between siblings, and some of their families are now suffering because taking care of mom has been the number one priority.


When this first happened, some sibs were not willing to move her to ASL, and also Covid had taken over, so the best option was in her home caregiving.


Not to mention, as mom has been getting much better under all this care, she has become at times a bit obstinate, controlling and at times just mean. She is mentally quite with it.


She doesn’t like people being in her house, moving her things around, taking her car away (as she put it, even though she had agreed to it and understood at the time), complains about each of us to the other after we leave. I won’t go into more details.


At one point we were able to get some help for a ‘break” as everyone was exhausted/ burned out, etc. we were able to have a full time caregiver there for 2 weeks out of the month for 4 months, bit the funds have run out for this. We each also cannot afford to pay for her care.


The caregiver help gave everyone a bit of a break and a chance to step back, get some rest, and reassess the situation.
Now the siblings (most of them) are ready to look at ASL’s for mom.


She has already fallen 3 times in her home, so is a fall risk. Her OT, PT through Medicare has run out, and they have released her. Someone has to give her showers, and only her one daughter is willing, but mom refuses.


Mom is convinced she is going to get better and will take care of herself and be on her own in her home. That obviously cannot happen. She has become more obstinate at times, yet demanding that we be there and take care of her needs she we are trying through OT and PT instructions to have her get up some and move around more and do some things for herself. She can do a little at a time, but gets worn out, winded, or sore, so she says no, she won’t do it, at times.


She has no intention of leaving her home. AL is not discussed.


We all know that is the best option, but Medicaid is what she would have to go in an AL on after the funds run out from the sale of her home, and paying her bills first.


1.) How do you convince someone who doesn’t want to lose control, is in denial about her care issues, athough knows and has told us we cannot continue to take care of her 24/7, that an AL facility would be the best option for her needed care, etc? Things will only get worse as time goes on health wise for her, and one fall by herself would do her in.


2.) Also, is it better to move her into an assisted living now when she has her mental faculties, or wait until later when she doesn’t know what’s happening as much?


It is quite a dilemma the sibs are trying to figure out, and very difficult and painful also, to say the least.


It would be so much easier if she was more open and willing to work with us. Some parents are not.

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I think ALF will not work for her without assets to pay. Most will not accept medicaid (tho some apparently do, and this a good thing to check out).
Currently you are enabling a Mom you describe as currently quite "with it". Meaning capable of understanding. I think the fact you ALL now recognize that your Mom needs 24/7 care means you should get together and speak about withdrawing what support is not absolutely crucial, and about ALL OF YOU going together to tell your Mom the facts.
If she will not agree then nature will take its course. We have a member named Elaine I hope will speak with you if she sees your post. Her own mother refused care over and over and over and eventually did end up having an incident, and dying in her own home. It can and it does happen. And it may happen in your Mom's case. I think otherwise, given your Mom is basically with it, you cannot force the issue. The time will come when something else will break and the issue will then be forced.
I sure wish you all luck with this. It is impossibly difficult to know how not to enable a senior you recognize does need more care, but who refuses said care.
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Lizrose Apr 2021
Yes, it is very hard to enable a sr. to recognize she does need more care and that means moving out of her home into an ASL. She does not want to lose control of anything. And I mean anything. Including telling her children what to do!

Maybe the dr. will have to intervene, or one of the 'favorite' children that she listens to more. I dont' know We will see what happens when the sibs meet next week for a family meeting, finally our first one in person, to discuss this entire situation.

I am going to mention many of these comments that were sent to me here on this forum as a way to help us come to some decision.

thank you for all your replys. Sooo very difficult.
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It's a dilemma if no one is her PoA, thus can make a beneficial decision on her behalf. If no one has PoA, and no one in the family pursues guardianship, then you will need to report her to APS as a vulnerable adult to get her on their radar. They will eventually gain guardianship and make all her medical, financial and care decisions for her, if they find she is incapacitated.

If there is a "next time" she falls at home and is then taken to the ER, this is the opportunity to intercede and make sure she is not returned home. This would be an "unsafe discharge". No one in the family should go to retrieve her to take her back to her house. Sometimes the hospitals will work very hard at guilting family to come get her and even take her into their own home. Never do this. At the hospital arrangements might be able to be made for her in LTC. Your mom's reticence might be a sign of her cognitive impairment, as judgment often erodes first, along with short-term memory. It is like standing by and watching a train wreck in slow motion. I wish you success in getting her somewhere she will be safe and your family can breath a sigh of relief.
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Lizrose Apr 2021
My brother is the POA, but refuses to get involved and say anything about making the decisions that are needed. He wants it to just go away. (See my previous reply..) He leaves it all up to the woman to decide. Ugh

It's possible her reticence could be a sign of cognitive impairment, but she has always been a very stubborn person and a vein of narcissism is also there. (in my opinion...)

Yes, it is like standing there watching a train wreck in slow motion! I completely agree. I told my eldest sister back in Oct. last year that we needed a plan B to put in place (i.e. ASL). She and none of the other sisters would listen to me or even entertain the idea. It is very frustrating to just wait and watch this all unfold. I have tried numerous times to get them to do something about. Now, she has finally starting looking at ASL's, as you will see in my other reply comments. She's finding not much out there with medicaid. We'll know more when we meet for our family meeting next weekend. prayers and fingers crossed we can find a solution that will work for everyone. As of right now, she asked each of us to contribute funds to pay for mom to stay in her home at least another month. None of us can afford to do this on a regular basis. We'll all end up in the poor house and have no one to take care of us! Ugh I hope this is a wake up call for all of us! Thank you for your reply
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Very Similar situation. As are most of us reading these postings - to gain ANY small insight to how to navigate these VERY difficult times. To make matters worse there is COVID.

I was able to get mom on Medicaid (dad on VA Aid & Attend) between these 2 sources we have 50 hours a WEEK. which seems like a lot and not to sound ungrateful - There is WAY more than 50 hours a week to regain my complete freedom(VERY little assistance from sibs). I AM TETHERED in ALL possible ways. Mentally, Physically, Financially & Business wise. No more are we children/daughters/sons. I Am a Life Care Planner & executor. I wish I could go back to being just a daughter but I know that part of the relationship is past. It is NOW all about quality of life at this point and HAS to balance in my life as well.

I wish there was an answer to this ever growing (people are living longer with critical illness)challenge. If there is 1 valuable lesson I've learned from my situation, it's I WILL NOT put my children through this.....I will realize that I've lived my life and it's their time to live theirs....I will give them 'early on' permission to Place me in a SNF or whatever is needed - guilt free!

Caregiving isn't just A JOB (to those CNA's in a SNF) you have to have a passion for the Elderly. VERY FEW of these type people exist, the good ones get frustrated by the short handed staffing and leave to find more rewarding & fulfilling industries.

Just as we all have done raising our Children we have to have tough love. MANY on these forums struggle with how to care for our loved ones that DON'T WANT help & yet we SEE the needs (hygn, meals, house work, repairs, fall haz, bathroom etc). I personally, have had to step back from my Father who refuses to accept that he needs help. In one of the heated conversations he advised me that he has never asked for my help. It was eye opening to me that he was mostly correct.....he had not asked for much of the help I WAS (WAS) doing. I believed I was HELPING him, when in fact I was helping myself being that I can SEE what needs to be done and doing it. It wasn't appreciated. So now I dont do anything that isn't asked for.....It is harder to not do what I see needs done than the struggle to do ALL that needs to be done. I think?

I contacted the local Center for the Aging (Texas/Counties have these) they offer FREE Counseling. One of the recommendations is to keep a journal which is a little therapeutic but MORE over it is a source to refer back to WHEN THE day comes that SNF becomes the only - last option and I have to use the Courts to do it. Next start the planning. Research & site tours (when & where possible), begin to get financials in order. Medicaid does a 5 year "look back period" so the sooner YOU begin to prepare for this path the better. This is a tactical challenge and isn't done overnight. YOU DONT need an attorney, print off the application and start on it now....so you know what will be needed when time comes. If I can do it ANYONE CAN.

Churches are a great resource for caregivers as well even if only for respite/a break. Post for interns (They need "hours")at Post Offices local stores anywhere there is foot traffic.

To those that are reading this, I pray Gods resources abound in your life and that your needs are provided for supernaturally. That God will refill your energy and provide insight into your specific situation. In Jesus' Name AMEN.
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LindaC11 Apr 2021
Hi
What is the form you mentioned printing for an application? For Medicaid?
Right now mom owns a home and has money in savings.
any info would be great!!
LC
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As some wise people on this site said to me: “Your mother is only managing in her own home because you are doing all the work for her!” This is you and your siblings’ situation too. Time to look into a care facility and get back to your lives. I think if she falls again and has to go to the ER, you can have the doctor on staff write it up that she is no longer safe in her own home. Let her seque that day into a care facility. She’s already fallen and it’s documented with rehab. You can have the social worker start the paperwork for Medicaid. Start getting all your paperwork in order now.
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I predict that unless something drastic is done, that one by one your 5 sibs will back out of helping, and the "last sib standing" will be the one to take on fulltime care for your mother.

Do you think this is a possibility?

ALL the sibs need to tell the mother that they won't be providing care for her anymore, and then back out of the picture.

Do you think this could happen?
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Lizrose Apr 2021
I'm not sure. My eldest has put so much of her time into taking on most everything to keep mom organized with monthly calendars to all sibs, takes to dr. appt.'s, arranges all other appt.'s, etc. She was with mom when she fell twice and literally freaked out. I think she is taking it on too much and taking it on to the point of damage to herself. Maybe the eldest feeling most responsible thing. ? I told her she could only do so much, and would have to let some of it go in letting mom discover she can't have everything the way she wants. Mom often gets angry with her and tells her she's too much of a perfectionist and doesn't want to listen to her. I'm not quite sure what this sister expects or why she feel so responsible. It's actually a bit ove the top at times. Mom needs to see reality and not have all that help.

We've already had one sib back out out due to burn-out, but came back with geting some help to back her up.

I don't know if we can get all sibs to provide united front with mom and have the 'meeting' with her. We are scheduled to have a family meeting with just the sibs next weekend where my eldest is going to present to everyone what info. she found with ASL and medicaid coverage. I'm hoping we can come to some much needed decisions then... thank you for your suggestions.
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Lizrose, this is going to sound harsh, but ask your Mom which one of her children is she willing to sacrifice so that she can remain in her house? Tell her close to 40% of caregivers will die leaving behind the love one they were caring, and this is due to pure exhausting of caregiving. She could lose two children or more.

Very elderly parents still view us as still being in our 20's or 30's with a lot of energy, not realizing that their grown children are senior citizens themselves or close to being seniors. Even showing my parents my Medicare card and AARP membership didn't phase them.

Regarding assisted living.... your Mom is at the age where she probably remember that aged friends and loved ones went to the county home for care, most of these places were asylums at the time. Your Mom may have no idea that today's assisting living facilities are more like hotels. My Dad loved his senior facility because he was around people of his own generation. He never felt alone.
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Lizrose Apr 2021
Funny you should say this, but my mom stated the other when myself and my older sister were there, that we are young. (we're both in our 60's!) Ugh

So you know, she's already thought about us taking care of her.

And yes, she experienced many, many years ago her mom going into a "nursing home", because she and her siblings could not take her in. She came home everyday after visiting her and cried with seeing how awful they were back then. She told us to 'never put her in a nursing home!' So, the guilt was started back then... lol

A vein of narcissism has always run through mom, so that makes it more difficult. thank you for your advice!
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You've been lucky that the entire family pulled together through this last year to keep your mom safe but these next few months are going to be even harder. This is where the "tough love" portion kicks in. Probably a family meeting, without mom, is needed to layout a plan of action including:

1. Review her paperwork or establish paperwork for Power of Attorney, Medical Power of Attorney (they aren't the same and don't need to be the same person). Also review her finances.
2. Start looking at Assisted Living facilities without her and determine what she can afford and if they will accept Medicaid once she qualifies (Medicare doesn't pay for assisted living).
3. Establish your boundaries - no overnights, one check-in or visit per day, someone will grocery shop for her but no meal prep, This is HARD but she has to understand that this is how living independently works, she has to be independent or she has to go to assisted living. EVERYONE in the family has to buy into this.
4. Wait for the disaster - another fall or hospital trip which will probably end with her needing a nursing home - or if you're lucky she'll soon realize that moving to assisted living is necessary.

Most of us have gone through this process. It's not easy and our mom/dad/love one is angry and spiteful, but just like with a toddler or a teenager they have to learn the natural consequences of their decisions. You say your mom is mentally sharp so she can see the results of her stubbornness and decide how she wants to live. I had to do this with my father. I cut off all help except grocery shopping and trips to the doctor. After years of asking him to move to assisted living he finally relented when he realized that I was out of town and he needed someone to apply an ointment to his itchy, itchy back and there was no one to do it. Not a life-threatening situation (it was an allergic reaction), but it was scary for him to realize that he was actually all alone with no help. He begrudgingly agreed to assisted living at age 97. Both of our lives are much better and he now says he should have moved earlier when he was more able to make friends and participate in activities.
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If she is competent - you can't just move her. No facility will take a competent adult who is refusing. You might have to wait till she is a "danger" to her self or others and step-in and get legal guardian ship.
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I've read and re-read - why can't mother be left alone?

She has a falls alert which (glory be!) she is now wearing reliably. She can't walk without a walker, but I take it she has then been supplied with a walker? - so she can walk. She remains a falls risk, no doubt, but she won't be any less at risk of falling for another person's being in the house.

So..? Why the 24 hour supervision?
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Debbie17 Apr 2021
Its obvious to me.
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Saw the word narcissism mentioned a few times in your answers to others, and that in a year the siblings and their families are burned out, and this:

"My eldest has put so much of her time into taking on most everything to keep mom organized with monthly calendars to all sibs, takes to dr. appt.'s, arranges all other appt.'s, etc. She was with mom when she fell twice and literally freaked out. I think she is taking it on too much and taking it on to the point of damage to herself. Maybe the eldest feeling most responsible thing. ? I told her she could only do so much, and would have to let some of it go in letting mom discover she can't have everything the way she wants. Mom often gets angry with her and tells her she's too much of a perfectionist and doesn't want to listen to her. I'm not quite sure what this sister expects or why she feel so responsible. It's actually a bit ove the top at times. Mom needs to see reality and not have all that help."


I feel so bad for your sister, all of you really, but especially her, the one groomed to be your narcissistic mother's personal slave. I can imagine how burned out she is and it makes me sad for her.

I sincerely hope that at the family meeting all can decide to back off on any and all care until your mother is forced into professional care where she belongs. Why is your brother POA and not the oldest sister who is doing all the work? That's not right either. I hope he gets a clue and stops doing basically nothing while your sister is burning out and it's affecting her health.
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BurntCaregiver Apr 2021
ExhaustedPiper, you probably already know why the brother is POA and not the eldest sister who's doing all the work.
Seems like with elderly moms their sons are always the golden ones who can do no wrong and their daughters can be the work horse who gets treated like crap.
They should all back off and stop doing everything for her. Let mom be as stubborn as she wants. If she falls again and gets hurt she's in a nursing home. Some people have to learn the hard way.
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