How will they hold it together?

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Winnie15

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My patient is almost 3 yrs into her disease.
Things at home are quite bad as there has been a family split, and the husband has had to cope with a lot of things.
He has come to breaking point and doesn't know how long he can continue to be there for his wife, he wants her to go into care and she doesn't, I can see both sides and it's awful, truely awful. They don't even know if theres anywhere that would take her as she's a level 5. And although there are 4 care givers at home with her it's still not enough.
My work has become an emotional place to work in, it's so damn sad.

any thoughts?
 
Well?!?

I don't even know how to begin to answer this......I am the sole caretaker of my husband, he is trached and vented. This job does wear me out, luckily though I do have a friend that comes by EVERY day for me to do errands. He is a Godsend. I think (just an opinion) that women seem to be a little bit more nurturing. This is just an opinion as a am a mother of 7 and 3 stepchildren, not to mention 4 grandkids and 2 on the way. Now as far as me seeing my children and grandbaby's that is not always possible. I just am telling you mostly that everyone has a different level that they can live up to. Yes, somedays I want to pull every hair out of my head. I have decided that in this life, there are 2 things. One to be served and then to be the servant. I don't mind being the servant, I can walk talk feed myself and all those other little things that are SO important to my PALS. I do know that some days, I do have resentment, and all I want to do is just go somewhere with my friends, So I have come to the conclusion over the past few years who my REAL friends.
When Freddie was first going for the vent and trach, EVERYONE was willing to help, Well when we got home and the reality sunk in the answer I got was "We can't stand to see him like that" Well my reply was that is ok, and then little by little my support group just disappeared. They do run errands or things like that. As far as leaving them with Freddie not on my worst day..........Toooo much responsibility. That is ok though.....

I hoped this help, it it hard to make these decisions and I feel they are on a personal basis........I hope my little saga helped!

LOts of Hugs!
netty
 
Thank you that helped a lot..
they say women are the weaker sex yet time and time again we prove that saying wrong.
Yes I agree that us women are more nurturing.
The patient is vented and trached like your husband, and they have a 3 & 5 yr old children.
Theres no space in the house where they can get time out, and there's always someone around because of the carers, so no privacy.

I guess us woman carers are just going to have to be there for her and in the mean time wait to see what the hubby does, theres no telling what he'll decide.

It's a rotten disease, and something I knew not much about up to 2 mths ago.

Thanks for sharing

Winnie
 
I have been reading the "Share the Care" book and am impressed with the dozens of ways people can help a family at a time like this. There are tasks for everybody, if you think about it. Somebody could take the kids for a couple of hours, mow the lawn, do a load of laundry, deliver a meal. Maybe if this family had a better support system they would be better able to deal with their circumstances. I cannot recommend the book enough! Cindy
 
yes Cindy that would be a good book to read..
These people held it together until the parents fell apart and took whatever family support they had away from them, from what I understand they got physical with the son in law and the patient had to witness this and not be able to act.
They had carers take their leave for annual holidays etc and were left with a skeleton team , which took it's toll on the husband.
The caregivers do a lot of the house work but we stay away from the kids as the hubby has said they aren't part of our job, and I think it makes him feel less of a parent when us women come along and nurture them.
Meals had been delivered once a week and have just stepped up to twice a week.

This husband needs to get away , he needs some rest and recreation, he's at bursting point, and of course the patient is full of fear that he won't come back.
It's such a hard emotional time at the moment, but we're all pulling together to try and help.
It's great having this website to come to ... it helps a lot.

Winnie
 
The thing I got from this book is that there are care taking roles and "helpers." But the more people involved, the less stress the family feels. Helpers can be found everywhere- at the children's school, the wife's former PTA, the hubby's work.

Neighbors, church members, and co-workers often want to help, but families hate to ask and people need specific duties. That's why I am impressed with the "share the care" system. But then again, I'm big on systems, plans, and the like, LOL. Others might find this whole system-thing way too much.

Anyway, if you find it in your library, it is a quick read, I promise. And the system calls for one or two professionals to get things started, so a family such as the one you describe, with caregivers on deck, is ahead of the game.

PS. thanks for the compliment on the site! I wish you well with this family. Cordially, Cindy
 
Cindy

We had my husbands clinic visit today and they suggested a web site based on the book you are referencing. They suggested to come to my home and set things up and the web site and for me to pick a facilitator, per say. My husband was not very receptive to this and made it clear, as he is the patient. He said "we" are not ready for this and it is not necessary. The nurse said it was for me and he said he understood but not yet. He was willing for them to send us the tape regarding all this.

My heart and prayers go out to the patients/family with little ones involved. I am still so so saddened by the young ages of the ALS patients.

Praying for God's mercy on us and for a cure soon
 
Maybe after he listens to the tape...

I am glad to know there is a website. Makes it so much easier to paste a link rather than me trying to explain something that, after all, I did not invent, lol!
 
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