Follow
Share

My MIL is so afraid she will step on my foot when I'm moving her she almost makes us both fall. And she has severe Rheumatoid Arthritis and tries to "help" but ends up making more work. I have calmly and sweetly tried to change these. But her dementia makes it a daily maddening chore. I am wife to her only child who can't handle any of this. So it's me 24/7 caring for her in her home. I've not slept in my own bed in a month.

This question has been closed for answers. Ask a New Question.
Short term, maybe talk her through every step of what you need her to do to safely get her up.

Long term, why is she living at home alone? Is anything in her condition likely to improve? If not, I would get some home health aides over ASAP to assist with her care.

Longer term, start looking into a nursing home unless enough at home care can be arranged to give you back at least most of your life.

It's unfortunate that your husband will not help. What's up with that? If he really can't, ok. But maybe he can put his fear aside and help you help HIS mom.
Helpful Answer (6)
Report
MILcare247 Oct 2019
See is not home alone. I am with her. Her dementia has developed sundowners syndrome. We never leave her alone. I am here, hubby comes and sits 1 or 2 hours every other day so I can go home and shower. She gets very upset when I leave because it breaks her routine. Which makes her confusion and agitation worse. She is blind in her left eye and has no depth perception.
Bed alarm last night, so far so good. But the cat woke me up at 4am!
(1)
Report
For safety’s sake, get an OT with geriatric training in and photograph the pointers given to you for weight transfer.

Two benefits - immediate advice on what YOU need to be doing for safety and hopefully better approach to what you AND SHE need to do, and MORE IMPORTANT-

-a trained and an experienced opinion about her present circumstances. If she is not “safe and comfortable” in your care, and if YOUR life is being negatively impacted in your reluctant role as a caregiver, it’s definitely time to start seeking alternatives.

I slept on the floor beside my mother’s bed for two months following her discharge from rehab. Doing so is far past above and beyond....
Helpful Answer (7)
Report
MILcare247 Oct 2019
She is safe and comfortable in my care. I probably just displayed my thoughts poorly. I am here to care for her because hubby can't handle it. He comes and gets the laundry, and runs errands. He comes and sits with her for 1 or 2 hours every other day while I go shower and see our adult son.
(1)
Report
Unless you are able to direct her safely and she can follow you confidently, it's not only maddening but also risky - for both of you, but she's the one with rheumatoid arthritis, osteoporosis and cancer.

What professional/trained support do you have with her care? What other care options are you and your husband considering? It's now a month since you moved in with her to look after her, is that right? - and what happened that made this necessary? I'm sorry for all the questions.
Helpful Answer (4)
Report
MILcare247 Oct 2019
She began having mini strokes in June. And had at leat two within the heat that were unnoticed. So, her physical ability changed somewhat, then her mental ability began changing aggressively. Neurologist said it was Vascular Dementia cause from all the strokes. And she has developed sundowners syndrome. We began staying in her home to care for her in July when she was discharged from rehab the first time. But she had more strokes. Then the dementia got worse. And her physical limitations did as well. Started with home health but she was not improving. And it seemed to cause more pain and functionality problems. So her PCP said rhe she believed she need to be on hospice to keep her comfortable, and push her to improve when that is not going to happen. Not sure if this answered all of your questions. If I miss something please call it to my attention. I've been uo since 3:50 when my MIL became a spider monkey and tried to climb out if her bed and over her wheelchair. But she didn't fall this time. And tonight we have attached a bed alarm.
(1)
Report
What's going on that's keeping you from sleeping in your own bed? Not getting enough sleep or good quality sleep can have major impacts on your own health and well being. Are you afraid MIL is going to get out of bed? There are alarms that can help warn you about nighttime movement and at least let you sleep until they go off.

Someplace in my reading was a statement that people with dementia take longer to process a question or direction, as much as 40 seconds. The more words we use the longer it may take to process. So one of the best things we can do when working with a dementia patient is get into a habit of waiting for a response instead of repeating or going on to say something more. I found with my mother a "script" of short directions used uniformly helps with our transfers. Stay on the script even when your MIL is making all the right steps. It seems to help with the timing and offset my mother from making those "helping" steps that don't really help.

I suggest seeing if her PCP would order some in home OT to work with the two of you on safe techniques. The OT can recommend equipment, like a specific kind of walker or wheelchair, or make adjustments to customize equipment to work best for your MIL. We were surprised with how much easier my mother found walking after the PT tech adjusted her walker.
Helpful Answer (7)
Report

And your husband is okay with you living with MIL now to be her 24/7 caregiver?

(What's HE doing in the meantime????)
Helpful Answer (13)
Report
MILcare247 Oct 2019
He comes and gets the laundry, runs errands, sits with her an hour or two every other day so I can go home and shower and see our son.
(1)
Report
If your husband can't handle any of this, then I suggest that "His" mother be placed in AL. This is not fair to you and I do not understand why you do not put your foot down, no pun intended;

You do not have to live with her, there are other options available.
Helpful Answer (12)
Report
MILcare247 Oct 2019
There are. But she lived in a personal hell, ALONE, with her husband who had undiagnosed dementia and parkinsons. Became violent and aggressive. She had no help and didn't recognize the symptoms. Nor did his dr. I just want to cate for her gently and sweetly because she deserves it. I've know her since I was 12, 44 years. She has been kind to everyone. She deserves no less care.
(4)
Report
Your husband cannot handle seeing his mother in this condition? Or your husband cannot handle being an hands on care giver? Could he visit with Mom a couple of hours a day and keep an eye on her so you don't need to closely watch her for a bit?

I understand DH is an only child, but are there other family members who might visit and sit with MIL? Her siblings? Her nephews or nieces? Her friends? Just having someone in the house to carry the "watch" load while you cook or nap can help a lot.
Helpful Answer (3)
Report
MargaretMcKen Oct 2019
OP probably needs to focus on what SHE cannot handle, not on making things nice for DH while she still does nearly all the heavy work.
(7)
Report
See 2 more replies
Why a month since you slept in your own bed? Is it since a discharge from hospital – or what else prompted the change? Perhaps you could put a time limit on this – say another month. If things don’t change by then, MIL will need to make other arrangements. Tell her this, and tell DH as well. After three weeks if things aren’t on the mend, put your foot down. OK, month is going to be up, what are the options? Because continuing like this isn’t one of them.
Helpful Answer (7)
Report

Your husband can’t handle it? Too bad. He has to. Unless he’s okay with you dying or being incapacitated before MIL is.
Helpful Answer (11)
Report
lealonnie1 Oct 2019
Well said. How come when men 'can't handle' things they lay the burden at OUR feet, as if we CAN handle what they can't? Come on.
(6)
Report
See 2 more replies
My heart breaks for you. This can’t go on without you burning out. Have an honest talk with your husband about how this is effecting you. Better still, show him this thread with your remark and the wonderful responses here that are supporting you.

Don’t know much about your husband and it’s not my place to judge him. You know your husband. You know your MIL. You know this is taking a toll on you. I commend you for reaching out to this forum.

I hope things get better for you soon and you consider all options available to you.
Helpful Answer (4)
Report

So very tough, and I am worried for you. The end result of you being seriously injured will mean that she will end where likely she should end before your serious injury. I think it is time for you and hubby to have "the talk". I am afraid for you. I am so very sorry. So sorry. But this cannot go on without injuring you. And that will do no good for anyone. As helpless as your hubby is in the face of this now, he will be all the worse when she is in care and you are being cared for by HIM. Imagine that if you will.
This is a dreadful dilemma, but honestly, knowing our limitations can save so much grief going forward. I am so sorry.
Helpful Answer (4)
Report
MILcare247 Oct 2019
We have talked about it. And she has been in two facilities, short term. Neither of them cared for her they way they should. She is so kind and quiet, she gets ignored. Even after I blast them and call their attention to what happened.
(4)
Report
So, she has dementia, lives in her own home, has severe RA to the point where you have to "move her", and you have no help. This is not a sustainable situation. You need to get her moved to assisted living or skilled nursing so they can provide the care she needs. This is not going to get better and as long as you are, literally, doing the heavy lifting your spouse is not going to do anything to get this situation resolved. You are allowing him to have a fantasy that things can just go along as they are and that they won't get worse, way worse.

It's time for the hard discussion. with your husband. You obviously love him very much to take on this burden but the problem isn't that she "almost makes us both fall". The problem is that she needs far more help that you can be expected to provide. And you are right, she will make both of you fall eventually, and then any placement becomes an emergency which is not what anyone wants.
Helpful Answer (3)
Report

So, you are caring for your unmanageable mother in law in her home 24/7, if I'm reading your post correctly. You are 'moving her', to boot, which means that both of you are GOING to fall one of these days, undoubtedly. This could mean you'll both be lying on the floor for God knows how long waiting for help to arrive. Pretty ugly picture, huh? But it's the truth of the situation you've accepted for yourself, for some reason. You haven't slept in your own bed for a month, yet your husband has, I take it, since he 'can't handle any of this'. So he sleeps like a log while you stay up all night tending to the needs of a woman who needs a STAFF of qualified people to care for her.

Reread the above paragraph to see what's wrong with this picture. Then have a Come to Jesus meeting with your husband, who, in reality, CAN handle ALL of this with HIS mother. Make a decision as to where your MIL is going to move, and when, and then get yourself back into your own bed and have a good night's sleep. Okay?

It's hubby's turn to take the bull by the horns and get mother placed.

Wishing you all the best of luck
Helpful Answer (8)
Report

I guess you can do what my friend does. She and her husband moved in with his mom after his dad died because she is no longer able to live alone.

They are both retired in their late sixties. The mom is 90. She simply told her husband that she will not be doing anything that she doesn’t want to do for his mom. She told him to care for her. Guess what? He does.

He cooks for her. He takes her to her doctor appointments. He shops for her, he gives her her meds, whatever she needs. He tells her that he will help her all that he can but if it ever reaches a point that he cannot help her she will be placed in a home.

My friend told her husband that if she ever needs diapers that need changing or help with other personal issues that it is time for her to enter a home. He knew from the get go that she wouldn’t be doing anything she opposed doing for his mother.

My friend lost her own mother when she was young so she has no experience with the elderly and explained to her husband that she was not interested in being his mom’s nurse.

She tried to get her MIL to agree to an aide to help bathe her and the MIL refused, saying that she washed up well with sponge baths. She has never had a UTI so she must be doing an adequate job.

Also when my friend wants a break from living with her MIL she takes a month off to see her son, daughter in law and grandchildren that live in another state. She set her boundaries, does not budge and it has always worked for her. I think it works because she would leave him if he didn’t respect her. She left her first husband. He is her second husband and they get along well because he does not try to force her or make her feel guilty about not caring for his mom.

By the way her husband is one of six kids and no one else lifts a finger to help. God bless that man! The mother did tell them that she appreciates them moving in with her and to show appreciation she is leaving her home to them. She has a beautiful home in a desirable part of the city. She told them it was the least that she could do for them considering they moved into her home to take care of her.

Her son and DIL could not have her move into their two story townhouse. His mom uses a walker so they are renting out that property while they are living with her.
Helpful Answer (2)
Report
MargaretMcKen Oct 2019
It's probably a good idea for your friend to check on whether MIL has actually made that will leaving her house to them. With five other kids, you would want it done and dusted, not just an intention. Best if the will is drawn up by a lawyer who has taken instructions direct from MIL, without son and DIL being present, and has written a letter at the time explaining MIL's decision to leave the other five out. If even one of the five challenges the will for undue influence, it's a disaster, especially if there is an alternative 'she promised me it would all be equal'.
(2)
Report
Are you using a Gait Belt? That can help quite a bit.
If she needs more help than a Gait Belt ask about getting a Sit to Stand.
Very easy piece of equipment to use and it helps with transfers. I even used it to help my Husband in an upright position to change him, I did not have to worry about him loosing his balance and the changes were fast and easy.
I could easily move him from chair to bed, from one chair to another.
Helpful Answer (6)
Report
MILcare247 Oct 2019
I do have one. I do use it some times. There have been times, that things happen so quickly, I can't use it.
(0)
Report
Margaret,

It’s all on the up and up. She hired an attorney and drew up her will. She informed the other children what she was doing. They all own their own homes and accept that she feels like he is deserving of her home.

His brothers and sisters rarely visit and when they do it’s for just a few minutes. They don’t have her over to their for holidays or anything. They are glad he is caring for her so they don’t have to be involved.
Helpful Answer (1)
Report

One suggestion for right now might be to separate out as best you can the things that MIL does that make work for you instead of saving it, from the things that bring you close together and risk falls. Anything that doesn’t save you work needs to go off the list of what MIL is ‘allowed’ to do. Perhaps you could move the equipment she is using – knives, chopping boards, whatever – out of reach. Perhaps you say ‘the doctor says no’ and find her something else to do instead. Perhaps she is only allowed in the kitchen if she can sit down to talk or do a job. Put a chair in the bathroom for the same rules there.

That should reduce the things that are risking falls, even if it doesn’t solve that problem completely.
Helpful Answer (3)
Report
MILcare247 Oct 2019
Se is not able to help with most things. As her hands are almost.completely closed from Rheumatoid Arthritis. She is able to still make a way to feed herself, I just make sure bites are cut very small and she eats slowly. We laugh, alot. Me mostly to keep from crying because she is declining so rapidly.
(1)
Report
Your MIL was discharged back in July from rehab to home, initially with in-home care, but when that service turned out not to be working well you took over.

Do you think it might be a good idea to revisit the decision to discharge her home? Do you feel that you were given enough information about your MIL's various, serious health conditions to be confident of meeting her needs? And will you be taking the PCP's advice to consider hospice care?

I'm sorry to ask all these questions, but when your profile also states that your MIL has cancer and she is declining so rapidly, it's difficult to tell whether your living in her home and helping her to mobilise is a short-term solution that you could probably handle with the right support; or whether it really would be better, safer, more comfortable and more sustainable for your MIL to be found a place in a nursing home or dedicated hospice facility.

I understand that your husband is finding all of this extremely difficult and don't mean to criticise him, but does his difficulty extend to not wanting to ask detailed questions about his mother's prognosis? I just wonder if that makes it impossible for you to have all the information you need.
Helpful Answer (2)
Report
MILcare247 Oct 2019
We have indeed began hospice little more than a week ago. Her nurse comes at a minimum once a week. And every day if we ask or need it.
Her CNA comes 2 or 3 times a week for bathing mostly and to drop off supplies. She went from hospital to rehab at a nursing facility. Then hone with home health. Two months of PT, OT and RN the first time. Then PT, OT and RN for a month the second time. Her PCP noticed her decline physically and mentally during the second round of home health. Especially because it was aggrivating her physical ability and not helping, i.e. Rheumatoid Arthritis and Lupus flares, x3 in just 30 days. She was in more pain and the stress from more pain cause increased confusion.
So, that said, she is care for by me. She has medical professionals in and out all week. Just she is not able to answer her questions because her short term memory got zapped with her last cluster of strokes. And the strokes ate due to her blood being thicker from her auto immune diseases. Her leukemia is not being treated, because she is so small in stature. Dr said it would cause more problems than it would solve. And when needed, she recieved blood transfusions. Hope this made some sense.
(3)
Report
MILcare,

You have a kind heart. You’re what I would call ‘an angel.’ From your description it doesn’t sound like your husband is purposely trying to neglect his mom or you. Still hard for you without his help. Emotionally he can’t handle it so it all falls on you. That is so sad. It’s very unfortunate.

You are a perfect example of unconditional love. Oh boy, that is very rare indeed. I am concerned about your health though, both physically and emotionally.

Do you have any outside help? Council on Aging provides help. Can you hire additional help? What about palliative care, hospice? Volunteers from church?

Is it possible to find a facility that would be suitable for her? You could visit as often as you like. Maybe hire a sitter for a portion of the day.

Wish I could offer a good solution but some situations are just so hard. Obviously you love your mother in law. I can certainly relate to that. I adored my MIL. She died many years ago from non Hodgkin’s lymphoma. She was a sweetheart.

I wish you and your family the very best. Hugs! 💗
Helpful Answer (3)
Report
MILcare247 Oct 2019
I got her on the waiting list with area agency.on aging. It's a years wait, even on hospice. So not help really. Hospice started a week ago. Cna has given her two bathes. And they are not as good as I would do them. They have supplied a bed, potty, pull ups, wipes, gloves and bed pads. And yesterday she had an in home xray for the fall she took Friday.
Hubby is an only child. They are a very small family. No one to call on to help. I suppose I could ask someone from her church, but I would hate for them to see her at her worst "sundowners periods ". Because she says things she doesn't mean, and hallucinates quite a bit.
I do love my Hubby and my MIL, very much. I did sleep a little sounder last night on the sofa thanks to the new bed alarm. But her cat woke me up, again, at 3:50ish.
Thank you for your kind words, and for reaching out. This forum makes me feel not quite so alone in all this.
PS: I take joy in the small things. Yesterday after getting the stank face when giving MIL a list of all lunch options, a grill cheese was her light up face. I gave her her grill cheese, cut small so she can handle it. And as she took a bit and began to chew, she clapped like a toddler that was very happy. Those things make me smile. And cry inside to see her decline. Hugs.
(6)
Report
MILcare247:
You must keep the Gait Belt on at all times. Even if she is sitting watching TV. You never know when you will need it.
And because she is on Hospice you can request a Volunteer from the agency. It is a Medicare policy that a % of patient cost be volunteer (I think it is 5%). The volunteer can not do "hands on" or direct care but they can sit with her while you run to the store or for lunch or do anything you need or want to do. They will also do light housekeeping if you request that.
Helpful Answer (4)
Report
MILcare247 Oct 2019
We must request a volunteer sitter two weeks in advance. And then it is still not guaranteed. But Hubby and I schedule or dr appts together. So this will happen st some point that ee need a sitter.
(1)
Report
what does MILstand for?
Helpful Answer (0)
Report
mmueller1283 Oct 2019
Mother-in-law
(0)
Report
Reading other posts, it seems you are getting some help. Wonderful!

I suggest letting them do their job and do something else while they are there - maybe a short "date" with your husband to get coffee or window shop...

Ask the doctor for a few physical therapy sessions in the home - to teach you better ways to move mom and manage her "helping". Keep a gait belt on mom at all times. Can she use a walker? It would help her balance with transfers. If she gets to the place that she can not stand at all, you may be able to rent a Hoyer lift.
Helpful Answer (2)
Report
MILcare247 Oct 2019
She has a walker, but as of her fall on 10/4 she can not put weight on her right leg. Xrays show no fracture, but she is very sore. She is using a wheelchair now, but cannot push herself due to her hands. I read all the comments and advice and use what I can advice it's practical for our situation. All is appreciated. Thank you.
(0)
Report
How about giving her a tedious task that will require her to stay in a certain spot, away from you, and stay after it until it is completed? That will allow you to move around when you need to, and everyone is contributing to the task at hand.
Helpful Answer (2)
Report

MILcare,

We read postings but we only know a tiny fraction of a person’s lives. I would say that most everyone means well and some even hit the nail on the head with being right on target regarding advice but none of us knows exactly how someone else feels. If we have been in a similar situation we may know but otherwise we are just guessing. I personally don’t have a clue what it is like to care for someone with dementia or ALZ. Still my heart goes out to you. I love your gratitude for the small things, her being able to eat the cut up grilled cheese. I had to cut my mom’s food too. I appreciate small things too.

I do know what it’s like being sole caregiver in my home without help. I did finally receive a small amount of help from Council on Aging.

My mom lived with us for nearly 15 years. She has Parkinson’s disease. I did the best that I could and it never felt like it was enough. I burned out. I had trouble with my siblings. I wasn’t appreciated by them for caring for mom. They were thrilled not to have to do it. They had the nerve to criticize me.

Unfortunately, mom loved to stir things up between us and had them believing all kinds of crap. They weren’t decent enough to even hear my side. So be it.

I ended up telling my mom to live with my brother since they don’t feel I am good enough and let’s see if they can do any better. She is there until she is placed and I haven’t had contact with her. It was complicated. Thank God for therapists. I was beyond burned out. I was fried to a crisp!

Did I love my mom? With all my heart and soul. Could she be difficult? Yes, she was a perfectionist. Perfectionists are never easy to please. Do I love my brothers? God knows that I tried. I hate conflict. All my life all I ever wanted in my family was peace and harmony. Will I ever have it? No, it was a dream but not reality and I used to think I had to be strong by holding on but my real strength was in letting go.

No one truly has the right to tell you how to think, feel or act. There are people who genuinely care in this world. There may occasionally be ‘know it alls’ who don’t have a clue about anything but think they do. Some people are oblivious to everything until tragedy strikes their lives.

I really do admire your beautiful heart. You are rare and your family is beyond blessed to have you in their lives.

One thing I do know is that you care for your MIL that goes beyond any kind of obligation to her. That is apparent in your words. You say that she is deserving. I am glad she was and is special in your life. My MIL was special in my life too. It went both ways. She told me that I was the daughter that she never had.

I am glad you have some help, hardly enough. It is sad there are waiting list for services. Nature of the beast. Shortage of help. This world needs more angels like you.

Even angels need to pay their bills and I so wish that people who have extremely tough jobs as caregivers would get more respect, appreciated more and certainly get paid more. That would certainly help alleviate the shortage of help. I have never understood the pay scale of jobs or the way in which most of society values others.

Keep reaching out. We are here for you in spirit. We care. I know that isn’t a whole lot in a practical sense because you need real hands on help.

I hope that you will get relief soon. I would call her church. Our church has a ministry has cooks meals for others and so forth. Take all the help you can get at this point. I wish I had taken advantage of opportunities that were available.

Take care and God bless. I don’t know about your faith and you don’t have to be practicing any faith for me to respect you. Just want to let you know that I burn candles in mass and I am going to burn one with a special intention for you and your family.
Helpful Answer (2)
Report
MILcare247 Oct 2019
Thank you so much for your kind and wise words. I am nothing special. But when I love, I love with my whole heart. Hugs. And thank you for the candle.
(2)
Report
See 1 more reply
I'm not sure who suggested that I have hubby come sit with his Mom for a couple of hours before lunch. While I run home and shower instead of in the afternoon. She stayed more lucid and not as anxious or aggitated while I was gone. Thanks for the advice!
Helpful Answer (5)
Report

You have answered your own question. Your calmness and sweetness won't cut the mustard. She is mentally gone and nothing you can do to fix it. It is beginning to destroy who you are now and what you could be. Once you, the caretaker, are so badly impacted by the behavior of the people who are no longer "with us", note that not everyone is capable or cut out to be a caregiver, then you must do what you have to do to save your sanity and have a chance for some peace in your life. You do not deserve this. You must face reality and place her where she is safe and cared for and so you can live the life you deserve. Please don't wait.
Helpful Answer (1)
Report
MILcare247 Oct 2019
She is mostly lucid during the early day. She "tries" to help because she has always been the care giver giver herself. But she is blind in one eye now, and physically can't do the things she thinks she can. If I made it seem all bad that was not my intention. It's not. If and when the time comes we will place her. But we are not there yet. Thank you for your input.
(0)
Report
See 1 more reply
Elders don't realize that they've lost some of the skills that they once possessed. My own late mother almost hurt both of us when she grabbed the vacuum cleaner out of my hand. Prayers sent to you.💞
Helpful Answer (2)
Report

This question has been closed for answers. Ask a New Question.
Ask a Question
Subscribe to
Our Newsletter