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Fallenangel07 Asked March 2018

Is there a support group for the person that is receiving care?

I am the one that is trying to know what all I can do to prevent my caregiver from getting caregiver burn-out.

BuzzyBee Mar 2018
Fallenangel07

Hello. :) I am sort of in the same situation as yourself.

I make sure he has 'days off'. Well usually 'half days'.

We work round my food for lunch and tea. All prepared before he goes out. I can use the microwave usually, so that's ok. He has to make sure that the kettle is only filled with 1 cup of water, otherwise it is too heavy to lift.

I can refill it with 1 cup at a time.

This way he can eat out as a treat and loves to look round old buildings and churches. He has a bus pass. As he is diabetic I make sure he has a small packet of biscuits and remind him of. what I call, THE 4 o'cock RULE. He must eat a little something around that time. I make sure he is dressed for the weather and has sweeteners etc

It does help. I also stay in the other room when his friends call round. So he can have 'Manly' chats. hahaha

It also helps me and gives me a break, so a double bonus. :)
This is while I am of sound mind (at least I think I am - hahaha)

What happens in the future we will adapt to. We have no choice.

So good luck and keep your chin up. Come here to let it all out. NO ONE will judge you for anything. In fact you will most probably find it is a case of 'Been there, done that'

Take care

polarbear Mar 2018
Fallenangel - THANK YOU for recognizing that your husband/caregiver is having burn out. Most of us here always complain about our loved ones demanding more and more from us and rarely if ever give a thought about what we caregivers need. So, kudos to you big time.

The only suggestion I have is for you and your husband to have a heart to heart talk. I know you said he resisted talking to you, but somehow someway you two need to talk. That's the only way to resolve your issue together. Maybe your doctor can help facilitate a consultation with a family therapist. A third party with authority (like a doctor, a parent, a priest if you attend church) most likely will have better success in convincing your husband to openly discuss the situation with you.

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cwheel Mar 2018
Oh I am so sorry to hear you are struggling. Have you discussed any of this situation with your doctor? Maybe your Reumatologist can recommend help based on your diagnosis. Maybe you both could go to counseling together along with your son.
I know as a caregiver I get frustrated when my mother tries to do things that place her in danger of falling. I really fear for her safety, falls can be really bad. I does sound like he is having problems with burnout. You said you thought he was upset because you felt he would have more to care for. Maybe it's because he doesn't want you to hurt yourself by doing more than you can safely do by yourself. This can be really frustrating for the caregiver as well as yourself. God Bless you all...Prayers your way...

Fallenangel07 Mar 2018
I have severe RA, so I have good days and on those days I can do more for myself than on others, but I have more bad days than good. I also have radial neuropathy, which has left me with min use of one arm. And recently lost my sight in one eye .
I need assistance with most of my ADLs or at least supervision. I have always been very independent so this is very frustrating for me as well and I am trying to learn how to do as much as I can on my own, but if I am trying and fail then he gets very upset. I am assuming because he is afraid of me injuring myself and having another problem that he will have to help with .
We both have been struggling for the past couple of years with my disabilities, our finances and trying to handle all of it by ourselves. We both had good jobs and I lost mine after I exhausted all my medical leave and he eventually did the same to stay home and care for me.
I just recently got my disability awarded, but it seems to have caused us more stress than relief. Everything is so complicated.
He won't let me talk to him about getting help, he wants to handle everything on his own and at this time he has no support and, to my knowledge, he hasn't even considered any.
On top of everything, we have a 6yr old son. Although he is very independent himself, he is still 6 and is another responsibility that my husband doesn't want help with. I think he is trying to do too much on his own and the end result is major burn-out.
Any advice is much appreciated.

Countrymouse Mar 2018
I'm really sorry to read of your situation.

I am honestly trying to ration myself when it comes to questions! - But...

What are your care needs, if it's not too personal a question?
What support is your husband getting or considering at the moment?

Fallenangel07 Mar 2018
MyKid58,
When signing up for the site, I didn't have an option to check that I am the one being cared for. So I believe by default it put that I was a caregiver when I didn't check an answer.
To my knowledge, my caregiver, my husband, does not have a profile on this site, so i am not here to see what he says about me. I am concerned about our relationship due to what I think, after reading the discussions of others, is burn-out.
His fuse is so short at this time, that I am not even able to have a simple "how is the weather" conversation with him, without him exploding on me.
So I have turned to the web, trying to find a legitimate support group, to help me know how to help. I have no one to turn to and I am desperately trying to prevent a divorce.

GardenArtist Mar 2018
I don't know about support group, but you could get handouts from organizations such as the Alzheimer's Assn. or Area Agency on Aging, JWS or others on preventing burnout, and read them from the perspective of the person receiving care. Try to identify ways that you can counter the burnout tendencies for your own caregiver, discuss them with him/her and see if you can create solutions to address them.

Midkid58 Mar 2018
Your profile says you are caring for someone. Are you ALSO being cared for? Confusing-- this site is great for venting and such, but would you want to come here and read what your CG is saying about you?

I'm sure there are many other boards. While awaiting DH's liver transplant I had a big support group online about caregivers for TP patients and he was on the "recipient" side of the forum. We never crossed paths.

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