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How do all of you deal with it?

Started by frustrated

27 Feb 2013, 5:43 PM

My husband has advanced cirrohsis of the liver. He has never drank in his life. His an overweight diabetic and has A fatty liver that has developed into cirrohsis. He as been sick for some years but was officially diagnosed 21/2 years ago. He is not concidered a candidtate for a liver transplant as so many of his other organs have already been compomised.

He doesn't eat the things he should and doesn't eat a diabetic diet or a low salt diet. SO he isn't doing anything to really help and slow down the progress of his desease.

I can relate to so much of what I have read. He is stubborn and won't use a walking aid even though he has very bad knees due to his weight and his condition. He is "fine, it is just his knees. He has retired so sits around the house and reads or watches TV. I recently reditre and there are so many things we could do and see. But he won't use a wheelchair so we don't.

I don't know if he really understands teh nature of his condition or that he will just continue to deteriorate. He is so stuborn and won't discuss much. Also when his ammonia levels are high, his mind doesn't work like it should, yet he thinks he can. He always complans about what to eat and even when I cook his favorites there is always something wrong with it.

I do volunteer one morining a week, try to see my friends for supper once in awhile and am connected to my grandchildren and children.

It is just so hard to wahtch someone you love slowly deterriorate and there is nothing you can do. I can't "fix it". I think that is the hardest part, not really being able do do anything and watching the deterrioration and not knowing how long this will keep going on and on.

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Reply by moderator | modératrice

28 Feb 2013, 4:35 PM

Dear Frustrated,

I can relate. I too have a family member who doesn't eat for his health. In his words, he lives to eat.

This type of behaviour is very hard to watch for the people who love them and even for people who maybe don't feel love, but are duty-bound to care for and/or about them. It's so easy to cry, "How can I help you if you won't help yourself?" In the case of my family member, he would contend that he's not asking for help. In fact he outright says he doesn't want help and considers any caring about his health and well-being as meddling.

How can we accept?

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Reply by moderator | modératrice

28 Feb 2013, 4:36 PM

Hi again,

Have you read this new thread started by NiteLad?

Dad won't let us help

I think he'd appreciate hearing from you.
Colleen

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Reply by Brayden

28 Feb 2013, 10:29 PM

Dear Frustrated,

I can feel the high level of frustration from just your few short comments. It makes me think of another very similiar situation I have been witnessing lately. The daughter is experiencing the same stubborness etc. with both of her parents. After many attempts of getting appropriate professionals and volunteers on side, all to no avail, she came to the conclusion that she could not change either one of them. If your husband has been like this for most of his life, I doubt that any attempts at getting him to change will work. It is so good to hear that you are taking steps at self care and get away from the scene to keep up your strength and positive outlook on life. There is a limit as to how much you can give of yourself and you must protect your own life. This in no way means that you do not love your husband and you should not feel guilty doing it at all. Yet you want to try and keep the line of communication as open and honest as possible. Please let us know how things are going and feel free to vent on this forum. Caring about you,

Brayden

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Reply by NatR

28 Feb 2013, 11:34 PM

Dear Frustrated,

your story is going to resonate with almost every single person who reads your note!

So glad that your wrote to the forum - you are not alone.

i know family members and friends who make very bad decisions about their lives and unfortunately they have the right to make those decisions.

i want you to understand that most of us have walked in your shoes, and in the end we all have to stand back and say :

i care and I have tried to help support you
I want to do more for you but without you meeting me half way blocked unable to do any more for you.

whether you actually say these words to your partner or family member - or whether you just say them to yourself, just say them.

its a release for you to admit that you have tried your best.
please don't think this is a sermon - I don't want it to sound that way - but the day comes when you have to look after yourself and if that means going on your own or with friends etc., then that's what you have to do.

i felt sad for you and your husband - understanding how serious his health condition is and how much you have cared and tried

I am sending you a big hug and hope you feel encouraged.
keep writing and venting as it helps to share burdens.

we have to recognize that some things are out of our control - part of the serenity player
God help me to change the things I can - And I forget the rest but its about realizing that some things cannot be changed - so use your energy and help where it is appreciated and needed.

best wishes from someone who has spent way too much energy at times trying to help change what cannot be changed.
natR

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Reply by frustrated

28 Feb 2013, 11:41 PM

Thank you Brayden for you kind words. It is hard not to feel guilty when I do go and do things on my own.

Sometimes his mind gets muddled and he gets so defensive over the simplist comment or question. I understand he isn't who he has been, but it is hard not to snap back and be angry.

I guess I am angry with him for not taking care of himself and for becoming who he is when it didn't have to be. I know he won't change, I have tried for to many years to get him to change his eating habits.

I just don't know where the caregivers get their strenght to keep going year after year.

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Reply by frustrated

11 Mar 2013, 4:12 AM

I have been reading some of the other postings and find them helpful. It helps to know there are alot of others who are caregivers and their support. I seem to go from angry to depressed and back again.

It is very frustrating that there is nothing I can do. I can't fix this and theither can anyone else. I think that is what is do depressing, there really isn't any hope. I know I have been told to just enjoy each minute that I have with my husband. But he has changed and most of the time he doens't even want to carry on a conversation. SO I have onesided monologs.

I am glad that here I can just unload and it is ok.

Thank you for listening.

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Reply by NatR

11 Mar 2013, 1:54 PM

dear frustrated,

Yes, it does help just to be able to unload your feelings here. Feel free to say what you feel...I do know that the readers will understand.

I was talking to a friend the other day whose spouse is dealing with slow onset dementia. She has been struggling with the feelings too. When you cant change an outcome..you feel the loss, the grief, the helplessness. You are not alone.

To be a caregiver to a loved one, a spouse, a child, any member of your family who was once capable of self care - is so difficult. The job itself is hard enough - the hours the continual round of needs...meals, personal care, attention, diversion, and watching over them....

But to be a caregiver to a loved one who will not get better,or who will get worse, or who will not listen..is doubly wearing on the caregiver.

The only thing I can suggest is to try and get out for periods of time so you can refresh yourself - and DONT feel guilty for needing social interaction, friends, attention and support for yourself.

We ALL deserve that. You need it, your spouse needs it...and you need to keep yourself healthy and keep going on.

I hope that today you feel that you are being heard, that you can make plans for just YOU - and that you will try and minimize your guilt. It is something that we all feel as caregivers...if only we could share things with our carees..our loved ones. Sometimes you cant...sometimes they dont know, dont hear, dont care.

But YOU matter as much as your caree....and this is what Virtual Hospice is all about...a network of voices discussing the things that are part of the daily caregiving.

I will keep you in my thoughts today.
I also am making plans for myself this week, this day. I also feel guilty that I am doing so. I feel guilty that I want something that is mine, something that will make me feel renewed in spirit and body.

I struggle with it all the time. I bet lots of others do too. I encourage them to write to you and share their stories...we are not alone.

Best wishes,
NatR

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Reply by moderator | modératrice

11 Mar 2013, 2:49 PM

Dear frustrated,
So how can one enjoy every minute with a partner who has changed and who isn't enjoyable? Such a tough question and I surely don't have the answer. As NatR says, you are not alone in dealing with this situation and I hope others will post some tips about how they managed to get through the tough side of caregiving and keep their mental health.

You may wish to write your question to our professional team, perhaps our social worker Fred Nelson or our nurse specialists can help. They are soooo amazing and can see to the core of the issue and offer suggestions. You can write to them here:

Ask a Professional

You may also want to read the thread:

Caregivers: Can we talk honestly?

Frankly, I could use any tips people have to share with Frustrated for my family member too.
Talk to you soon.
Colleen

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Reply by Brayden

11 Mar 2013, 5:01 PM

Dear Frustrated,
I would like to add two comments to NarR's excellant comments. I just arrived home this week-end from our two month winter vacation in Scottsdale and I spent very little time on the computer while there. I had not even finished unpacking before the first of two calls came and thrust me into requests for support to people in crisis. It helped me not to feel guilty that I had taken a time out so to speak and enjoy life for myself and my spouse. So never feel guilty for taking time for yourself. The other idea I had is that you might try to get your husband to connect with another person that he can develope a trusting relationship with. I have done that with men in their end of life stage and find that extremely helpful for both them and their families. Men will often open up and give me information that they do not even share with their families. Check out volunteer organizations in your community. Just a thought. Please keep posting as we want to walk with you.
Brayden

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