How do I get my mother to agree to respite care for herself?

D, forget getting your mom to "admit" or "agree". Those are actions that require sophisticated reasoning skills. In my experience, reasoning is what goes out the window when there is cognitive decline.

Our approach was " now it's time to..." and " sorry mom, this is what the doctor says has to be".

It sounds like your mom's personality was difficult before the stroke. Don't think that you need agreement or buy in from mom. Just do what needs to be done.

aren't they though

Hi Everyone,

THANKS SO MUCH FOR YOUR REPLIES.

I would have responded sooner but I had trouble with my login this past week.

I just feel if I tried some of these suggestions her responses would still be what they have been so far... Things like, "If you don't want to do this ( help her with her challenges ) then don't do this! I can take care of myself!" Even though I feel she likely knows deep inside no matter how her memory etc.. has been affected that she can't be mobile and be safe alone yet.

I won't go into all of the various complexities of my mother's personality right now but her resistance to my ideas of having another person in to help her sometimes would definitely exist even if she didn't have her post stroke dementia. This walled off resistance to certain ideas that she has issues with for her own reasons even if discarding the helpful ideas might harm her in the end is a fundamental part of her personality from WAY before her stroke. It isn't a result of newly experienced dementia for her.

So instead of fighting a brick wall trying to get her to "agree to it" I am arranging it no matter what ...We have a brother that lives in a neighboring county and I will contact him to come and speak to her if need be. I hope he can reach her about not being so upset about it if I can't get the message about how I need time for other matters through to her on my own... My sister is not as forward as I am..... As she says she prefers to avoid "rocking the boat"..... So I'll contact him about explaining things to her... But it does HAVE TO HAPPEN no matter what.....


I am actually in the process of becoming a paid personal care attendant in the home at this point in time. I have no other employment and her insurance will pay for this in home assistance for her.... She can hire whomever she wants and as I've explained she wants her daughters and not people she doesn't know.... However what I feel is best is if another person is paid for at least some of the other hours my mother receives for home care.... I am going to try and have a pre qualified person from an agency be placed here as I feel it will be great to have a trained person here at the house to seek advice from along the way... Her initial home care services with VNA ended weeks ago so it's SO challenging guessing about what to do at times... I feel it will be GREAT to have a trained person to answer questions in our house soon....

My mother has ended her home physical / occupational therapy and has entered out patient therapy for her stroke rehabilitation..... Her latest balance tests still show her as a higher fall risk... On one of them she is closer to the line of "Independent Movement" but she still falls into "Ambulation With Supervision" right now... And because of her memory and confusion experiences since her stroke she can't always be relied upon to provide her own "Safety Cues" for using her walker yet so it's still dangerous for her to move around alone ..

Still ... Her balance tests ARE improving ( although she is having more dizziness... and chronic body pains affecting her mobility too )

Yet her memory and confusion ( speaking overall.... not just affecting her mobility safety but about lots of daily life areas ) is a VERY touch and go situation ..

One that is HIGHLY complicated by TWO recent urinary tract infections. I have discovered how INTENSE these infections can make pre existing dementia experiences be... WOW

She goes to a Urologist this week and I can't tell you how happy I am to get guidance about that challenge for her.

She is due for a new brain MRI but she has HUGE resistance to MRI'S so she has refused to do it so far. I am not sure where her brain function stands at this point after her stroke. She missed her 6 month follow up Neurologist appointment recently so I am not even sure what brain areas have been so affected by her stroke for these changes that have happened to her....

Her Primary Care Physician didn't see dead brain cells in the areas I thought were most related to memory functions.... Her stroke is in the Cerebellar region which I know affects some working memory but I still don't understand how it affects all the changes she's had .... Her Primary Care Physician said "I haven't looked at MRI reviews in .. years" so she really needs a Neurologist appointment since her first follow up with her Neurologist wasn't focused on her cognitive areas but on her mobility activities.... I believe she has some blood vessel ischemic disease that was present before her stroke and also some brain plaques that are present since her stroke but her Primary Care Physician said "They aren't Alzheimer's Plaques" when I asked her about them....

I have also been told by one of her Physical Therapists that "brain injuries don't always show up on a scan because you can't always see what has happened to the brain nerves on scans." Her Primary Care Doctor agreed with that statement....

AND I was told by one of her Occupational Therapists that, "When you have a stroke you can't predict how a person will be affected because it depends on how THAT person's brain functions.." so her Therapist claimed that even if the brain areas supposedly more related to memory and cognitive confusion don't seem affected on scans that doesn't mean that that person won't have memory and confusion changes after that individual person's stroke. Her Primary Care Doctor agreed with that too....

She resists admitting how much her memory etc has been affected so it would be challenging to urge her to do tests with a Neuro Psychologist even though I feel that could also help us know what she needs for assistance....

I can't tell you how unpredictable I find being her assistant to be.... I did research before she came home to know what could happen after her stroke but I realize now I was NOT prepared for what this would be like....

The additional reasons her life here is complicated is because she has various chronic things to address .... hemorrhoids.... urinary tract infections as noted above.... losing urine when she moves..... fungal skin infections..... chronic back and hip pains..... and she doesn't always want to seek assistance for her chronic health matters believe me.

In addition she only has 35% hearing left in her ears and she refuses to wear her new hearing aids...

Being as unprepared as I turned out to be for this it's wonderful to have this Forum to come to for advice. I'm sitting in the same room with my mother and sister right now. They have NO idea about what topics I'm discussing here... Online Support Groups are GREAT places for sharing stories without leaving your house.

THANKS SO VERY MUCH AGAIN.

Quint, you were saying when your mom was 60 she could do what she wanted is why I asked how long your grandmother lived, so is that when you mom was that age?

I implore you to seek a caregiving break. You'll be good to NO ONE if or when you'll fall ill.

@debdaughter ... My Grandmother? She died at age 90. Why?

Because our mother lived alone with dementia increasing beyond initial stage, we felt the need to intervene. We were all still working so bringing her to our homes would not suffice and leaving her alone was concerning. We started with aides coming in for an hour 3x/week, mainly to check on her and that she took her meds (locked pill dispenser.)

Because she refused "personal care", Medicare would not cover it, so we fudged if she asked and told her they paid for it and doc requested it. She raved about it initially, but shortly after increasing this to 5x/week, she refused to let them in.

We could not do the "friend" thing as she lived alone (and later refused to consider moving in with one of us.) However, since you do live with her, I would suggest trying what Dorianne (and others but hers is first and best!) did/said - bring in someone, initially just make it like a social call (arrange this with whoever beforehand), introduce the person as your "friend" or "classmate" and keep it short, say an hour or two several times a week until maybe mom gets used to this person being there. Get up during visit to "take care of something", make tea, get snacks, loooong bathroom break, whatever, leaving mom and your "friend" alone together, but you are still there. Even if this only can morph into your "friend" taking care of duties like cleaning, food prep or the like, it can take some of the burden off you. If mom ever becomes used to having your friend around, get out for short trips, using fibs like needing something from the store or what have you. If it is working, make those trips longer each week.

If this does not work, perhaps day care, or if she retires at night early enough, get someone (aide, friend, neighbor, another relative) to stay at the place and you get out! Same thing if she naps during the day. You do need to get away from doing this 24/7. I only take care of paperwork (bills, taxes, filing for benefits, making/taking her to appointments, visiting) and just that alone is exhausting. For those who are critical of us who do not keep mom/dad at home and care for them, it IS exhausting, it IS difficult and it IS time-consuming. Someone mentioned how at 60 mom and/or dad were traveling, having a good old time in retirement. Well, those of us now at retirement age are having to give up that AND consider that at our age some of us are not physically capable of handling hands-on care. Our mother outweighs me by a lot and I would NOT be able to pick her up or move her AT ALL. I commend those who can do this and provide mom/dad care in-home, but not everyone can do this (on the flip side, some MUST do this as there are no funds available for facility care, including those who make too much for Medicaid, but still cannot afford the cost of the facilities.)

So, try the suggestions (give it some time for the new "normal" to kick in though!) If one does not seem to work for a given time, move on to the next. At the least, get help for YOURSELF to free up some of your time, help to perform the usual day-to-day things like cleaning and food prep. Just taking some of the load off might help you. She can complain all she wants about this person being in the home, but let those rants fall by the wayside. It is for YOU, not her (unless she eventually allows some help.)

It seems like the “break” is needed here for health sake.
First, is it possible for your sister to give you that break since it is only once a week?
Second, I would nonchalantly explain to her that I need a break. Start with a few hours per day each week and slowly increase the number of hours.
I believe I understand what you’re going through. “Lifestyle change”. This is what someone told me when I started taking care of my mom. My best wishes to you, your mom and your sister.

What I have done with the two people (MIL then aunt)that live in my home, besides paying my children to stay with her, who were in their late teens. Those in the early teens assist by a watchful eye, taking in food, feeding when necessary,doing laundry,and little errands. Also I have homeschooled our children for over 26 years and it’s a great community to get connected to, you can hire for short windows of time 4-8 hours a couple times a week young adults age 15 and up as sitters, who can stay during the day and when you’re comfortable over nights. Also look into seniors helping seniors, they will match her up with a peer who is with it and able not to necessarily do any personal care but as company basically so you can get out. If you’re going to do this with any sort of pride and integrity you must take breaks often or you will find yourself on the end of burn out and not want to continue with her care or enjoy her anymore, spoken from experience!!

You will absolutely need respite, else you'll crack.

What about taking your mom to senior day care one or two days a week

DLW, I am kind of in the same boat. My Mom is 94 and is receiving palliative care through a local hospice program. I have to watch my granddaughter for a few days at the end of the month, so I asked the hospice social worker to set up respite care for Mom during that time. I don't know how much Mom understands, but I worry about telling her that she is going to a nursing home for a few days. It was either that, or I had to hire more in-home help, which would cost me $1000 more than what I pay now for evening care. I provide most of Mom's care during the day (about 12 hours worth). I have evening care M-F from 8 p.m to 8 a.m. My brother, who lives with her, feels that he has to be here when a have a caregiver here. My brother is limited by what he can do because of his health issues.... I have been doing this for one year. It is becoming a little too hard on me, both physically and mentally. Mom is having a harder and harder time walking. She is dead weight most of the time (and I am not a very strong person...). I worry about how I tell her she needs to go into a nursing home full-time...but I see that coming if she is still around in a few months. I have vowed to keep her in her home, but the evening care is starting to deplete her savings account....

don't go there for a day, then maybe a day later in the week. Say you have limited days to be there, and if she needs help beyond that she will have to agree to get outside help.

How about bringing that person in as help for you because they are cleaning your house as well as keeping an eye on mom as you study then work up to 'leaving for the library' - that will show the help is for you, your house gets cleaned, you have time off = win/win/win for you - then start switching it to an extra day but if 1 full day on your own is enough that's a good start -

You'd have to find someone who would do this & it can take time to interview everyone but if mom sees them coming for the interviews she will know it is for you so may be more co-operative

Quint, how old did your grandmother live to?

Excellent advice above. I’ll only add that I’d start from the beginning with the number of times per week that you ultimately want the caregiver to come. If you want 3x a week don’t start with one, for example. With a resistant parent you don’t need to wade in, better to present the new normal as it’s going to be instead of having to get her to adjust all over again everytime you up the hours or days. Good luck!

I wish Dorianne’s strategy worked with my mother. Nope! When I’ve tried that tactic, my 97-year-old mother’s response is, “It’s all about you, isn’t it? I’M 97 YEARS OLD!!” (Like her being 97 and infirm trumps my health and sanity at age 60 ... she’s a narcissist anyway.) She refused to let me bring some help in when we decided take a trip, trying instead to talk me out of the trip by telling me there will be plenty of time to travel when she’s gone (she’s 97 and still living alone ... she could live another 10 years!). So, we planned the 3 week trip in our motorhome, set up my daughters to go visit her on the weekends, and we took off. It has not been easy for either one of us. I call her twice a day and listen to her moan about how lousy she feels, how she’s just sitting and looking out the window, nobody comes to see her, etc. And I just keep telling myself it’s not my fault; I tried to make sure she’d be taken care of, etc. When we get home if she tells me how hard it was for her, I will remind her that we talked with her several times about having someone come in to help her and she refused. When SHE was 60, she went where she wanted when she wanted with no impediments or guilt, do I not deserve the same opportunity? Or must I wait until she is dead before I travel? And what if she lives another 10 years? What if my husband or I get sick in the meantime and can’t travel? We’ll be home one week from today and I’m ready for her!

First of all, you are very clearly a caring daughter and looking out for your mother in every way possible. One of the best things a counselor told me about my mothers care was, “be the daughter“. She told me not to be the doctor, the health aide, the counselor, etc. there’s no way to follow this advice 100%, but it has helped as a guidepost overall for me. My mother has late stage metastatic liver cancer and has recently gone on to home hospice. My sister and I take care of her as well. She has total resistance to having hospice volunteers come in because she does not know them and feels “awkward“ around them. A note of humor… I feel awkward cleaning my moms poop every day and seeing parts of her body I’ve never seen. My mother has dementia like symptoms due to ammonia in her brain from the cancer. In many ways, I must think of her as a child and therefore be firm and tell her what we need her to do. It’s so hard to do that and feel like I’m still treating her with dignity. But it’s like the air mask on the airplane, we must take care of ourselves first, so that we are available to take care of our mothers. For me, this has been a journey of radical acceptance and compassion for my mom AND myself. My mom has her own journey of death, and it involves some awkward moments and things she doesn’t want to do or face. Same is true for me… There are so many parts of this journey that I don’t want to face and yet I have to. All of us involved are accepting these new challenges, so our mothers must also. Death, by nature, forces us to have to be “one among many”. We must learn to be one person among many who have faced death, and in that, we become more human. It’s challenging for me to allow my mother to face the realities of death. I must admit that I, by default, most frequently buffer those realities for her. Bottom line, we have to take things one day at a time, getting support and relief that we need. Sometimes I picture myself bowing to my mother, like in a Namaste, and saying “I’m sorry I can’t help you in this moment, but I have provided other help for you.” I wish you peace and courage as you and your sister continue to care for your mother.

You say "...to help her find someone she enjoys being with so I can have some breaks during the week..... "

Mmm. You might have to abandon part of this goal: the "enjoys being with" part.

The thing is. You need regular breaks. But you're expecting your mother not only to agree to letting outsiders in, but also to be happy about it. And she just isn't.

Too bad! This is about you needing time off; and can you name any other role in any walk of life where a person is expected to be on call 24/7/365 without a break? So rather than the "by your leave" approach, go for the "like it or lump it" approach and stop waiting for your mother's permission.

I'm not suggesting you shouldn't try your best to find a good personality match, a capable, experienced person who will look after your mother nicely and be pleasant company. Just that your mother is never going to agree to your looking, so you're going to have to make it happen whether she likes it or not and let her make the best of it.

I refer to the "helper" as our friend. I start out visiting with my mother and our "friend" and gradually leave the two of them, first by staying in another room and eventually leaving the house.

I live with my 86-year-old mother and am with her 24/7. She can't (or won't) get out for anything but quick trips to the grocery store. She has moderate dementia and can still get around and take care of her own hygiene. She can't be alone, though. My sister comes when she can, but she works and has family obligations. I think about bringing someone in to sit with mom for a few hours, but she is extremely private and isn't used to having people around. Even if I could get her to agree to it, I fear that I will pay for it after the fact. Maybe I'll try the "it's about me" thing, but honestly, mom is not that selfless. Around here, it's all about her. I just can't see it being anything but more trouble for me, but I'm really burning out.

Dlw, welcome to the forum! If you get the daily questions sent to your mailbox you’ll be amazed how many have info that will help you (and/or browse the message boards). You've got the key with the above responses! Other discussions also include how small fibs and omissions help get past resistance over certain items.

Please force this change for yourself; you sound very upbeat but you deserve to get your head and/or body away and to yourself, maybe only once a week at first but hopefully even more than that! Good luck. :)

I did the same thing with my dad that Dorianne did with her mom. With my dad I did what I referred to as the "Help me help you" strategy. My dad was also resistant to assistance outside of my assistance but, like you, I needed help. In the course of several discussions I let my dad know that his accepting help from the outside would help me take better care of him in the long run. That I couldn't do everything and I needed help. It worked and he became more accepting of outside help.

Good luck! Come back and let us know how it's going.

I think that Dorianne's advice is sound. Make the respite about you.

After agreeing to move in with my sister when she could no longer be on her own our mother wanted to change her mind. She didn't really need that much help and she didn't want to be a burden to her daughter ... One of my other sister took her aside and said, "Since Sis retired they are are having trouble making their mortgage payments. It would help them a lot if you move in and pay rent." (This was not true, by the way. So what?)

Ah. Mom didn't want to do it for herself, but if it would help out one of her children, well that was another story!

Another objection you may hear is "I don't need a babysitter. Nothing is stopping you from staying in your room or going out for a day. I can take care of myself." I hear that from my husband. I'd admit that he was probably right. He would probably be OK on his own. But I would worry the entire time and it would not be at all relaxing for me. Please accept this aide for the afternoon, for my peace of mind."

DLW
Give us a bit more information in order that we can help you sort this out.
How old is your mom?
You and your sister?
Is mom getting therapy to help with her recovery?
Is she improving?
Does your mom have funds for private care?

My mom and I fought about this a lot when I first started caring for her!

A counselor once told me that she might ignore her own needs indefinitely, but that, as a mother, she would smash down a mountain if it meant helping or bettering the life of one of her children.

This was in the context of a session I had with her when I was trying to persuade my mom to move closer to me, so that I wouldn't have to give up my community, my career, and my support network when she started to need more care.  My counselor told me to tell my mom what I stood to lose if she didn't make the move. It felt selfish to make it about me, but I was surprised to discover how swiftly it worked. Mom made the decision and put her house on the market the next day!

So every step of the way in getting my mom to accept more support, I've learned to make it about me. I tell her the walker, the wheelchair, the hospital bed, the community nurse visits, the occupational therapist visits, the home support visits....they're all for me, because I'm overwhelmed with the tasks, or because I can't physically support her, or because I'm in pain (I have a disability), or because I need a routine, or because I need some spare time to do x, y, and z.....whatever the reason, I make it about me.

Whenever she grumbles about home support now, I just say, "They're here to help ME, Mom."  Most times - not every time, but most - she stops grumbling and goes along!

Worth a shot....