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.
How are things going? You haven’t posted in awhile.
We hope that you find a solution for your situation.
Take care.
My siblings and I are scheduled to ‘finally’ have a family meeting this weekend.
The eldest sister has talked to attorneys, ombudsman, and numerous ASL facilities. Finally! She talked to at least 14, and then narrowed down to who takes Medicaid and which are ASL and extended care facilities so as not to move mom twice, which makes sense to me.
Sister got video tours of the facilities that look promising, etc. She compiled all the data, pics, videos etc with all possible options breaking down which places take Medicaid and which don’t, what we would need to do for her to go into certain places, like sell her home, or not.
My only brother is the POA but allows the eldest sister to do most of the work as she is authorized quasi POA also. Long story I won’t go into.
She sent a compiled 10
page email to each of us to review before this weekend. With many attachments and YouTube videos of the tours. But asked us to not contact her until then. Just for us to digest.
She also gave the option of each sibling going to mons home once a week from 9am-8, but not staying the night. Just to be with mom if she won’t move from
her home, fix her meals, clean, etc.
And on the weekend hire someone to be there.
I don’t have a clue where the money will come from to pay them though. One of the many questions for the weekend meeting.
I do not know if I can be there one day a week as I have a disabled adult child I help who lives with me, and other big responsibilities with being a single mom. I have no other help but me, myself, and I.
Ex took off to another state with girlfriend and gives no help or support for his son. All on me.
This might be a way to make mom happy to stay in her home longer, but it looks to me like another bandaid. It’s inevitable if she falls, for instance at night when/if alone, we’ll be forced to move her anyway to an ASL. ?? But then it will be in the panic mode and she may not end up in the best option place. ?
or we just let time take its course.
I don’t know. ?
Sister brought up many other financial options to sell house, or remortgage, etc plus more thoughts. It was very thorough. Lots of questions ans lots to think about.
Will keep you posted after our family meeting if anything concrete comes of it.
Hard to know if all siblings (4) will be on same page and agree to move forward,
but temporary help we have now ends after May. 😳
Unfortunately since your mother is still competent it will be much harder without her consent - that is where her doctor, social services and protective services come into play. It may be necessary to have a guardian/conservator appointed for her as she can no longer make decisions where she lives, even if she is competent. All of you should keep a diary of what services are provided by the collective you and how much you spend to keep her in her home.
First, it is unfair for your mother to remain in her home and expecting her children and their families to give up their lives to keep her where she wants to live. Unfortunately as we live longer we don't necessarily live with our health in tact. It is also unfair for you and your siblings and families have to pay to keep her lifestyle.
2. If your mother has no funds, you need to start the medicaid process. One sibling should be in charge of this process - all of you can work together but there is a lot of paperwork needed and one person should be charged to make sure all the documentation is received. When I did this for my dad, the elder law attorney gave me a list of what was needed and as I gathered up the documentation I would check-off what was received and forwarded to the attorney.
There will be plenty of work for everyone to get your mother prepared. When my MIL needed to leave her house, my husband and the SIL who had been MIL's primary caregiver (until she went on strike) checked out places for her to move to. She too was not happy about moving, but was younger than your mother and except for when she hurt her back (for a few days) didn't need round the clock help.
It is best if you and your siblings work together and divvy up the work - then come back and report to the rest. You are lucky in you seem to be working together at this time which is so much better than families where all the work falls usually on one child.
I wish you and your families the best in this journey. Remember there is strength in numbers - present a united front to your mother.
"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."
The covid issue was certainly a concern, but less so now. It's probably safer in a facility than having multiple people, family or not, coming and going in her place.
There's nothing like being in the trenches to facilitate a change of mind, is there? FWIW, the facility my mother was in is IL/AL/MC. They locked down and had protocols to protect everyone. It wasn't until October that one staff member tested positive. It never went any further than that. I did get word that later another tested positive, but not one resident was infected! Now that most facilities have been given first options with vaccine, the chances of an outbreak is reduced significantly.
Although you indicate no real sign of dementia, I would question that. The early stages can be missed or misunderstood, mistaken for aging or other issues. Hearing loss is something that can lead to dementia, as are heart and other circulatory issues. It isn't always short term memory loss that shows up first. She is certainly in the right age group with her medical issues to be in the early stages.
I actually missed the subtle signs in my mother, having known nothing about dementia at that time (accusations of stealing, the most mundane items!) It was only in retrospect and knowledge that these signs became apparent. In her case, it was having difficulty with managing finances and repetition of questions or statements. She was also early 90ish and had a history of high BP, treated with medications. It also wasn't until we took the car away which meant having to help her secure food and supplies that I realized she was no longer cooking. Frozen dinners and boxed stuff was about it! After installing some cameras mainly to check on who was coming/going, but also for a sanity check, it also became apparent that she was wearing the same clothes over and over, once 6 days in a row, clean or not! I wear the same items over again, but this is a woman who had enough clothes to wear one item every day of the year and then some! Not her style to wear these older items.
It is great that all the siblings chipped in to help, even when it wasn't evenly distributed. Refreshing to hear that! But, as time goes on, they are realizing how difficult this can be. Now that there is burn out, fighting going on, and some suffering for their own well being, it is time to consider alternatives.
"...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."
I still question that. Although she may appear to be doing better physically, she is showing some signs that *could* point to early dementia.
Not liking others in her home can be normal, but it also can be her obstinance that she is fine and doesn't need the help. Taking the car away, in addition to having care-givers, implies loss of independence. The fact that she agreed to losing the car and understood, but now objects - did she forget she agreed to this?
"We each also cannot afford to pay for her care."
None of you should have to pay for her care. Chipping a little in now and then, for something special, is one thing. Providing all the funds for care isn't something you all should have to do. You need to pay for yourselves and save for your own future needs.
Funds running out for care - would she qualify for Medicaid? There are programs to provide SOME in home care. It isn't full time, but at least in the interim it would give all of you a break. If one or more siblings would prefer, they can get paid for that time instead of hiring outside help, but I would think burn out would say get help in and reduce the time we all have to chip in.
Now that you've all had a breather and can reassess, it's time to determine what options you have. As noted, some in-home care might help keep mom at home, but she would have to be on board with this as well. If that doesn't work out, then some kind of senior living or facility would be the other option.
While you all explore your options, it might be best to find EC attys to consult with. Many offer a limited first consult, so set up several and have all questions, concerns and financial information available. You all can do this without mom being present, for now.
She refuses showers. She is convinced she is going to get better. She will take care of herself. She will be on her own in her home. These are all lies and delusions that dementia, esp in the early stages, can fool your mother with. My mother was living alone, so there's no clue as to whether or how often she was showering. It wasn't until I had to help with supplies that it was clear she wasn't cooking anything. She would put items away in the same usual place, and then later say she needed more of these, forgetting she had more!
My mother's plans HAD included moving to AL when she felt the time was right. Dementia kicked that to the curb. She insisted she was fine. She was independent. She could cook. None of this was true, but in her mind it was! She was adamant she would not move anywhere, ESPECIALLY not AL! When asked about it, you'd think it was a dirt hovel prison. Obstinate? Oh yes, big time! At least my mother didn't demand we do everything for her (she was still mobile at that time, walker wasn't until years later.) No way would the "D" word be used around her. She thought it meant you were crazy (it doesn't.) As to forgetting, she felt she was entitled to forget things once in a while, because she was old! When you are forgetting what you forgot, it is a different issue!
By insisting you continue to do things for her, she is clearly NOT independent. IF you try to ask how she will get better and take care of herself if you are all doing everything for her, what is her response? I really do believe you might be dealing with early dementia and the denials will continue.
Initially I tried hiring aides, only 1 hr/day to start, just for sanity check. The plan was to increase time and care provided as needed. This didn't last 2 months. She refused to let them in, using her mantra from above. So, given my mother refused to consider moving, our EC atty told me we couldn't force her. He suggested guardianship. I doubt that would have been approved at that stage - she was still capable of most ADLs and could appear quite normal and capable at times. It just wasn't safe to let her remain in her place alone. Additionally, the place chosen for her would not accept a committal. So, we had to get creative. She provided the catalyst for that by "bruising" her shin and developing cellulitis just prior to the move. YB used this (OB had to take her to ER) to draft a letter from "Elder Services" at the hospital which told her she either moves to the place we choose or they will place her. She was madder than a wet hen, but bought this and reluctantly went with the brothers (I stayed out of the actual move, having done everything else, hoping to avoid the flak.)
So, I would start with EC atty. Find out if she would qualify for some in-home Medicaid assistance. If you don't have will and POAs set up, NOW is the time to get this done!
More to add...
Take a warm bath, a long walk or something else you enjoy to decompress afterwards.
Remember the serenity prayer.. there will things outside of your control in this journey.
IMHO, it can go a few ways;
A. Age in place. With family or aides. Your family is burning out so time for non-family (ie aides).
If this becomes insufficient..
B. Move into care. Elder obliges nicely. If this doesn't work...
C. Crises. Await the next crises. Often a fall.. sadly very often #hip or brain bleed from head strike. If survivable, then hospital sends to SNF (hopefully you have a nice one picked out).
D. Die in their home. Sometimes it does just happen they way they want it.
Sorry I if sound harsh 😔.
I meet them & their families at the #hip stage. I have great respect for their strong nature, their independant spirits. Often I am blessed to see the change from 'I want to live in my own house!' thru acceptance into something else. Often it is something like "well I just want a nice room, my own things around me, good people & a window". Some accept & adjust. Some storm & rage till the end.
(((Hugs))) for you.
I am very grateful for your insight. It helps me to know I am not the only one going through this.
You don't sound harsh at all, but understand lovingly what they are going through and then able to state the honest truth about all the very reasonable possibilities.
We all love our parents and going through this seeing what happens to them is so very difficult. We want the best for them, but also know we have to take care of ourselves and our families. The oxygen mask scenario...
thank you again - very sound advice.