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!
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.