I posted before about my mother who is paralyzed and in a wheelchair. She needs skilled care, but expects her children to care for her.
One sibling, Tom, does care for her the majority of the time and has for the last five years. He has DEMANDED that we do what he does. This includes transferring her from wheelchair to bed and vice versa using a slide board. (He has refused to get a Hoyer lift) She needs diapers changed, bed baths and wound care. She weighs over 200 lbs and can help a little bit with her transfer, but there is still a lot of bending and twisting happening on our part.- she cannot roll over or lift he legs etc. Nor does she help with bottom care.
Tom is 6’ 7” and weighs over 200 lbs. I am 5’6 inches and weigh 130.
Tom moved in with her before he ever discussed anything with my sibling and I. We were just expected to be on board. I have said from day one that I can’t handle her care, yet for five years he has insisted. I have tried and ended up unable to move due to back spasms after. I don’t care how good my technique is, I am almost 60 and she is big and dead weight.
. We have offered to help in any other way. Cooking, shopping, cleaning, maintenance etc. Tom says it is his way or the highway. He says he hates us. He refuses to communicate with us, except to demand us coming to take care of her. He has always been a narcissist and has trouble with people in general. The hate is not new or a surprise.
I have changed adult diapers. I don’t mind. It is the fact that she is heavy and paralyzed AND she has a massive bedsore on her back side that has not healed. She is also getting another bedsore next to the first one.
We talked to her a few weeks ago and explained that we do not feel comfortable doing physical care and will not do it, for our safety and hers. She said she understood.
Tom doesn’t want her to hire anyone, he want us to do it when he cant. Tom did contact a licensed nursing agency who said the only way they would come out is with two people, and one had to be a nurse, so he refuses to use them.He has found someone who will do private care for $15 an hour but will only hire her on a rare occasion. They won a lawsuit and she has plenty of money as well as long term
health insurance. So she can afford care, whether it be private care or nursing home.
Mom knows that Tom has made the family miserable by his unwillingness to communicate with us and his hateful attitude. But she is so afraid of going into a home, she lets him call the shots. She is totally capable of making decisions. She guilts us by saying if she goes to a nursing home, she will die. Tom loves the martyr roll.
My other brother and his wife went to visit her today. With the understanding that an aide would be there to care for Mom.
The aide was never scheduled. Instead, Mom insisted that they put her in bed and change her diaper, etc. She says that we have to, it is expected of us. My brother, who has serious heart issues did as she asked. It was hard on his back and he isn’t supposed to lift anything over 40 lbs because he has an enlarged aorta.. She has two bedsores on her perinium. One is very large and deep. It is packed. My brother was expected to change the packing and redress the wound. He is a janitor, not a nurse. The other is about the size of a half dollar and also deep. She had a BM so he had to try to get that out of the wound.
If brother had not put her in bed and changed her tonight, she would have sat in her chair for who knows how long after he left. Mom knew nobody was coming , it was her plan to have my brother do her care all along.
Apparently, our heart to heart with her did no good. What are we supposed to do in this situation? We can’t walk out and say, sorry, can’t do it,and leave her there. We want to visit with her but do not want to be put in this situation again. Tom leaves when we visit, he doesn’t want to see us Help!
Is she not in pain? She could become septic and die. This is serious. You need to request homecare from her PCP for woundcare with an RN. I am 5ft tall and no way would I be able to lift a 200lb woman. Just helping Mom out of a chair did a number on my lower back.
Was APS aware of her bedsores and how serious they are?
Try a Roho cushion for Mom to sit on.
Tom is still insisting that we come in an care for Mom- which we have refused to do. But, I was going to see her every other week- while I am visiting, Mom shares with me that things are not good, but doesn’t want to go to a nursing home.
i brought her a piece of pie- and got yelled at for it, by Tom, because “I am
not the one lifting her”. He says she is prediabetic- but she says she can eat pie if she wants to. I do not think a small piece of pie every two weeks will hurt her. He has used the fact that I gave her pie to tell me I am never allowed to see her again- which I am ignoring.
APS has been contacted- they did send a social worker out to see her- but she won’t share with the social worker what she has shared with me. Her desire to stay at home is so strong, she can’t see the big picture.
Tom and his wife are beyond burnt out- their choice. I asked why she won’t hire someone she said it is because Tom and his wife think someone is going to steal something- even though they have taken almost everything out of the house or they have it locked up. Their paranoia is keeping her from getting the best care, and she goes along with it.
They did put her in respite- in a nursing home- I went to see her yesterday. She had just gotten a shower- they used a Hoyer lift to lift her from the shower chair into her bed- when they lifted her, I thought she was peeing- but she has a catheter. It was discharge from her wound- it was bloody and I thought I saw some yellow in it. There was so much, it soaked a bath towel. I saw her bottom for the first time in months. She has a wound from her coccyx to the middle of her back that I can put my entire hand in.
I am sure that goes to the bone. Yes, it has been treated. Yes, it is also getting infected. She also has 3 sores on her buttocks that I would say are stage 2-3.
There are professionals who are seeing these wounds- and yet they keep sending her home. I think her sitting in her chair for 10-12 hours and laying in bed in one position all night is making things worse- but apparently I am not allowed to say anything. Tom has all the “power” as POA- and Mom refuses to say anything. This is her choice- and I have exhausted everything I can do. I know these wounds will kill
her. I know that she is unhappy and isolated due to Tom and his wife’s care.
. Tom has told us if she dies, he won’t tell us. If she is in the hospital, he won’t tell us. He didn’t tell us she was going into respite- we do keep checking on her…and that is how we find out. She says she isn’t allowed to call us because it makes Tom mad (he checks the phone records).
This is beyond stupid.
“ the right to rot”.
Do you think if you called APS that they would speak to the respite facility to get the information about how bad her wounds are ? Since I’m assuming your Mom denies and/or lets APS see her wounds .
It still may not help if Mom is competent to make her own decisions, though . Idk , maybe if APS got info from respite care , they would go back and try to persuade Mom to leave the house .
I’m sorry . Uggh , some peoples’ end of life ends up worse than it has to be. It’s hard to watch . But I try to remind myself that people make poor decisions at all stages of life .
If we live long enough we will all be needing some who really gives a rats hoohah!
If I was this lady and or one of her other children I'd be thankful TOM has stepped up to do the care. Trust me,,, it's not about any MONEY,,, it doesn't ever pay enough ...
What Tom needs is help with the mom. He feels he is being JUDGED and that's why he steps away. It is exhausting to care for someone by yourself... The once in a while help just isn't enough. They haven't a REAL CLUE what all is being done, ordered, administered or the moms continuous ASKING, DEMANDS probably at times. Mom obviously TRUST TOM,,, because she can SPEAK....
I hope and pray they read what I wrote about bed sores and maintenance.
I am currently caring for someone completely PARALYZED from the neck down and they can't move at all. They've been this way for 27+ years.
They only had 2 sores in 27 years... I know what I'm talking about.
I've learned southern engineering is my specialty because the GOVERNMENT IS LITTLE HELP OR NO HELP!!!!
Their hands start to close like a fist. I took a wash cloth rolled it, taped it and then put it in the clients hand. They e been ask by others in wheelchairs how do you keep your hands open and not curved? Now I cut POOL NOODLES to size. They are cheap and just the right size around for a hand to clutch.
Pillows are vital to comfort when laying in the bed.
Place one between kegs from crotch to knee then another from knee to feet. Keeps them from getting sores on legs.
Place a pillow under the arm, depending on which side you have them rolled on. THE RIGHT SIDE is best choice, many patients complain their heart hurts if you leave them on the left side.
FANS are important the pillows can make them hot.
Light weight pillow cases can be laid across the knees. This still allows AIR to hit them but not make them too hot...
*Also, if your patients feet are cold,,, cover them with socks, towel or blanket. It causes SPASMS and some nausea!!! Massage each foot then cover them again
Baby monitors are your friend.
Small "Bells" are your friend if they can move they can ring it. Some patients have been known to ring it a lot lol.
Hoyer lifts can come in handy if you know how to use them correctly.
Dead weight is so hard to judge with someone who doesn't move at all. You'll roll and roll and lift a bit and it takes some time to critique but YOU MUST BE PATIENT
These patients feel vulnerable and helpless, and they know their existence is totally upon those WHO SHOW UP AND TAKE CARE OF THEM
Caring for someone's as in baths or cleaning up the poop... Isn't for some. But FAMILY could show to COOK, or bring prepared food over and feed that loved one. It's probably been a while since she's been at the table with everyone and this can be done in her room.
Again, remember if you live long enough you'll be where he/she is. Be humble, grateful. And bite your tongue. Tom has be caring for you loved one and keeping her alive and from going where she obviously die not want to go... Include TOM when you bring food. Ask TOM "HOW ARE YOU? I KNOW THIS CANT BE EASY AND I DO THANK YOU,, for not dumping her to one side" Well leave that last sentence off. But THANK GOD TOM CARES!!!
The main issue that I read is not Tom's lack of caring but his bullying.
A strong man who can lift his Mother who lacks reason that smaller female relatives cannot do same.
No acceptance that the OP thinks differently to him about the care choices he makes.
Basically a case of one man making decisions & then wanting his siblings to make his choices work out, for him.
-A BED PAD can be cut to size, cover wound then put diaper on patient. This is changed daily. Bed pads are covered by Medicare.
-OVAL COTTON EYE MAKEUP remover pads. You mentioned a smaller decubitus. Same technique. Clean and pat dry, then use eye makeup pad to cover sore and tape, then put the diaper on.
Daily cleaning the infected area is a must. Patting it dry keeps TAPE in place. Also by covering the sore it helps keep POOP out of the wound.
Regarding calling APS, I believe you are over-stewing about this. They will certainly come if you describe the circumstances. If the conclusion is that your mother is safe in her current situation, then perhaps you will be a little relieved even if you disagree. And if the conclusion is that the situation is not safe, then there will be a basis for corrective action. If your mother is angry because you called APS, so be it: you are showing your love and concern for her. You are very concerned about your mother's anger, but since you love her, you need to do what you know is best for her. Her anger cannot kill you or her, but based on what you've told us, your inaction could hasten her death.
BIL probably would have died at that time without those highly specialized remedies. I can’t imagine a home caregiver thinking they could take care of stage 4 bedsores! Or his mom expecting it.
My mind is boggled.
if it is open, and to the BONE???
well that’s messed up.
she is in a compromised position in the first place… so.. get a round specialist on board.. have that evaluated.
get it analyzed and have them tell you his to handle it.
GOD, do I CARE!!
My DH…
Its just a shirt life time… and it hurts to see someone go down this path..
not sure where you live..
hoyer lift.. someone is selling one for $200. Maybe less… I was going to get it…. But he may not be around tomorrow..
I’m beside myself.. do what you can for mom..
take a course in maneuvering your LO…
Its not going to be forever..
ask about college students who need internship points for school.. college… talk to hospice…. Talk to hospitals colleges for nurses school.. they need practice,
Wondering about Mother's stubborness.. fear? lack of insight?
Are there cognition issues?
Wondering about Brother's stubborness/ridgid thinking?
Why would he think he must be the one to pack & dress a deep bedsore? (When not a nurse)
Does he have low trust in non-family people?
Our parents didn’t allow us to make foolish choices when we were kids.
Well, it’s time to turn the tables on them should they decide to make unreasonable demands from their families.
One word could change everything in these situations. It’s a tiny little word with only two letters, ‘No!’ That’s all it would take because this woman cannot live without help.
I would be willing to bet that she would change her mind in a heartbeat.
My cousins were faced with a situation where their dad didn’t want to be in a nursing home.
Well, when my uncle got sepsis, my cousins said, “Dad, we are not quitting our jobs. We are not moving in with you. You are not moving in with us. We will find a nursing home for you to live.” That was that! There are times when an elderly person cannot be offered any choices.
My uncle was fully aware that if he remained in his home he would die. He was lucky to survive his sepsis. He lived in his nursing home for two years and received very good care. He died at age 96.
The fact that your mom has money to spend on her care and your bullying brother isn’t spending it on her would make my blood boil.
No one should be hoarding a parent’s money to receive an inheritance.
I don’t care if the person claims that they will donate the money to charity, it still isn’t right. Their money should be spent on the parent’s needs before anything else.
Please call APS--soon. This whole post was sickening to read. Your poor mom. She's been totally brainwashed by your brother. She needs to be as far away from him as possible.
I hope you can advocate for her--despite YB's 'control'.
I would take her to the Cleveland Clinic ER, main campus this afternoon. It is not that far. Ask the local police, fire department to help you get her loaded in your car or hire a medical transport and get her there so she can get the care she needs. Then work like heck to see that she doesn’t go home to Tom.
He does not decide for you or anyone else. Your mother doesn't either.
Let me tell you something. I was an in-home caregiver for 25 years. When the bedsores start showing up that's when there's going to be trouble. Your mother needs to be placed. Those sores will never heal and eventually will go septic and kill her if they are not being properly cared for.
Tom and mom both need to grow up and realize that she needs more help than can be provided by him, you, and the family.
I'm sorry to say that you may have to be the strong one here. Being the strong one who resists doing any care for your mother. She may like so many others be forced into care by a lack of care at home.
Your mother needs to be in at least a rehab facility for a while to receive wound care.
Go and visit. You say Tom leaves when you're there because he doesn't want to see you. Call an ambulance while he is gone. I can't believe you haven't done it already. The Fear Of Mom must be deeply instilled for you to be so helpless and under her thumb even now, when she is deathly ill.
Good luck, but my guess is that mom isn't long for this world.
Plus the idea of a son changing his mother's diapers and doctoring her private parts gives me the absolute creeps.
She will go septic in short order and die. That's my take.
Which is why I suggest 911.
Lots of mental illness/denial/cognitive issues in play here.
I'm so sorry.
Bedsores can be fatal. Wound care needs to be performed by trained professionals after an assessment is made. Medicare pays for Home Health to come in to do it, actually. To take on wound care yourselves and watch ANOTHER bedsore form is to be willfully negligent. Or for your brother to be willfully negligent. This truly constitutes elder abuse, not like the usual nonsense people write in about here on A.C. A call to APS is warranted with a report about untreated bed sores. A hospice evaluation is also in order, but I don't suppose Tom would allow such a humane effort to take place for his mother.
What a dysfunctional dynamic they have going on! I'd bow out of the situation entirely and just go visit mom once in awhile w/o performing care duties. You'll hurt your back so seriously thst you may wind up bedridden yourself, for NO good reason.
Best of luck to you.
No one is forcing the OP to do anything. Tom nor the mother can force her into caregiving.
If she chooses to let them intimidate her into risking her own health and safety to be a caregiver, that's on her not them.
Stubbornness can be life-threatening. If mom and Tom are so stubborn that they will not use the LTC policy and will not allow any proper, professional help it is not going to end well. The mother will die of stubbornness.
I am wondering if brother and mom always had an abusive dynamic toward the rest of the family? This is baffling. 🤷🏼♀️
Bottom line your mother should be in a skilled nursing facility. I don't know if anyone can convince her of that. Your brother is acting truthfully with great malice. I don't think any of you should respect anything he says or wishes. I would hope your mother is receiving medication for involved pain.
So far, by participating in care, you have not said "no".
You are enabling all of this poor decision making.
I am sorry, but the only way to make this clear now is to make it honestly clear, whether in person or by mail.
1) Tell mother and brother that care required is too much, and your mom requires placement.
2. Explain that you have tried reasonably to talk about this with them, to no avail.
3. Tell them that you will not be participating in care any more caregiving.
4. Tell them your decision is final and you are not open to further discussion or argument.
I would consider that those of you who are realistic and will now be bowing out of care contact APS, explaining about the sores, et al. Tell them that you have attempted to have care placement to no avail and your mom is now a senior at risk. Tell them it is your intention now not to participate in further care giving, and that this will perhaps further in the short run endanger your mother, so that you want a case opened, and to have them stand witness to what you tell mom and bro.
Have them accompany you for a discussion with Brother and Mom making it clear that you will be willing to deliver some groceries to the door, cut grass and do cleanup, and such, but that you will not be participating in any way in hands-on caregiving in the future.
That puts an end to all this discussion.
And that is the ONLY thing that does.
If APS doesn't accompany you have a tape recorder or one person to take notes of your family meeting.
I suggested hiring a mediator come in when all of this started. I was told no by Tom and Mom. I would like to try that again, but brother is not onboard, because he doesn’t want to make things worse. He says we already tried.
thanks for your input
His is NOT providing proper care or at least in a "safe" manner.
It truly sounds like she needs either
1. Proper equipment in the home to provide care
or
2. Skilled Nursing facility that can use proper equipment
You are well within your right to say that you can not SAFELY care for her.
If you had told brother No u were not taking care of Mom, he would have had to do something. Your other brother could have died helping Mom. What are you all afraid of. Is this a cultural thing? Because d**n if I would allow my brother to tell me what to do. The only one I may have to answer to is my husband.
Get her admitted to the hospital and have the social workers call APS to report her lack of care.
You and your siblings are all contributing to the final demise of your mother by not standing up to your bully brother and getting the help your mother so desperately needs.
It's time to put your big girl panties on and now do what is best for your poor mother, before it's too late.
You will need to start refusing to do the care . Nothing will change if you keep doing it . I would just speak to mother on the phone. Don’t go over there .
I agree that APS should be called because of your mother’s terrible wounds. Your mother needs to be in SNF with proper bed with air mattress and professional wound care . Sliding across on a slide board is not helping the situation.
You and your other brother are not doing your mother any favors by going along with this nonsense .
She does see her doctor and is getting would care- because insurance pays for it. But, for her daily care, he refuses to hire anyone and does it himself. Including dressing changed etc. So, is it still okay to call APS? Do you think they will do anything
I think she needs 24 hour skilled care. She needs to be off her bottom during the day. But brother and Mom refuse.
You have eyes, you can see Tom is taller than you, know he is stronger. You have insight, can see Tom is a martyr.
My guess is Tom is being the 'Hero'. He seems to also feel quite entitled. Like he has the right to boss his siblings around. What HE thinks must be done... yawn.. bored of you Tom. So bored of hero-man. Why not put Mother in the centre of her care plan? What does Mother actually need? Does she need ONLY her adult children to be her hands-on caregivers?
No.
Some big life lessons are still coming for Mother and Tom. Well Tom really (Mother may have or may not have a case of Parkinson's Dementia & be unable).
#1 How to accept help
#1 This includes NON-family help
#2 No-one gets to boss everyone around
#3 You can say No to your Mother
You can SEE the issues.
Think now on how to get past this bully brother.
Involving NON-family is needed. That is my 2c worth.