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  Discussions  Sharing and Venting  I want my life ...
 I want my life back
 
 9/28/2008 9:31:38 PM
User is offlineStansail
1 posts


I want my life back
my husband is going on his second year of poor health.....bladder cancer, now has spread.  So much happened in past year, thank God is more a distant memory or else I would be insane.  I can 't go another round, with little help from his son, thank God for that help, but alone I cannot.  I am sole provider, can't work 10 hours a day, commute, shop, pay bills, walk dog, fix house, and so forth.  I find myself giving up, letting things pile up until I need to react to resolve.
 
He is much older than I, but he wasn't when we married.  I can't think of happy times, and my family is so far away.......... I have 3 daughters, and beautiful grand children I dont get to see, and now I cant travel to see them.  My one daughter did not have any children, until recently.  I was able to go out to see her, but what a price I pay for that.  My sadness was that I would not see her children, and now I have..... I just want to lie down and never wake up.  I am tired of feeling guily when I say things I don't mean to him, but I am tired of him telling everyone he is great, and he is not.  I am not strong anymore, I dont want his family to call me an angel, or I get the golden star award, I hate all of that.
 
I cant believe I have time to even get on to write this stupid note.  just makes me more tired
 11/19/2008 2:37:28 AM
User is offlinepw2buz
1 posts


Re: I want my life back
Stansail,

I joined this group today. Your post speaks to me, although my situation is not so bad as yours.

Feeling guilty when you say things you don't mean is normal and understandable. You are coping
as best you can. I do the same (say things I don't mean) and see them as my way of coping, of not
making an ugly situation worse.

Having been a member of another support group, I found that posting my fears and frustrations helped.
Knowing that others have similar experiences taught me I wasn't abnormal or "sick." Sure, the supportive
messages didn't fix the problems, however I felt a bit better about myself.

Keep posting.

pw2buz
 11/27/2008 2:50:48 AM
User is offlineMuddiggermom
3 posts


Re: I want my life back
Dear Lady, I am in a similar circumstance. My husband has end stage renal disease, alzheimer's and, I have just found out, Myelodysplasia possibly acute myelogenic leukemia. I have been caring for him for over two years now. And I have had to learn to do household repairs, finances, drs appts, dealing with insurance, hospice etc... It seems that it will never end. And I am clinically depressed, dealing with grief issues, and trying to stay sane thru all this. If it weren't for my therapist and the respite team hospice has provided me I think I would have OD'd months ago. No I don't go further away from the house than 15 mins at a time and I have a cell phone on me at all times. I feel tethered and stuck in this situation. But my therapist reminds me that it isn't going to last forever. My LO is terminal. I waver between grief for what's currently happening and hope for a better future, i.e. back to school for a new career, new friends etc. Some days, like today, the grief wins out. I can only say keep posting when you have time, try to get some respite care from hospice or wherever, and realize that it isn't going to last especially if your husband is terminal. You will get your life back, it may not be the same life you had in the past, as caregiving tends to act as a catalyst for change in the caregiver, but you will get your life back.
 11/30/2008 11:29:30 PM
User is offlineHopeful1
6 posts


Re: I want my life back

Hey there Stansail,

You have been through a lot.  And it sounds like you are still going through it. I was touched by your saying how you have trouble remembering happy times. How your children are far away and how it seems your sadness and sorrow are all that you can see right now. It sounds to me as though you feel sort of trapped.

Feeling trapped by the care giving needs of a loved one is normal and difficult, but there are some things you might want to think about. A few things came to mind when I read your heartbreaking note. (This was NOT stupid by the way) 

I had been a hospice social worker and I was wondering if you knew about hospice care? From what you describe, (his having bladder cancer which is spreading), your husband could qualify for hospice care. It is care for people with chronic, progressive and incurable illness and their families. (Did you get the and their families part?) In most cases Hospice is homecare, with a Visiting Nurse, Social Worker, medical equipment and some medications are covered. Sometimes, caring for a loved one is not possible and hospice care can be provided in a Nursing Facility.

It sounds like you really need some help and you are being left alone to do it. But you don’t have to go through this alone.   

 You also don't have to tell people he is doing great. Do you really think people believe that anyway? They may want to believe it because it makes them more comfortable, but why do you feel you need to say that?  How could he and you be doing great when he is so sick and you are just about out of your mind?

Whose feelings are you trying to take care of? The ones who want to give you a golden star award? Are they usually walking out the door while they call you angel and sing your praises over their shoulder? Just a wild guess, but if so, no wonder you hate that!

No wonder you are tired of it.

I’ve said this before and I noticed my friend Muddigermom has said it too…you will get your life back. In fact, you can start now, by just speaking your truth and honoring your feelings.

You are in my heart and in my prayers.

  Discussions  Sharing and Venting  I want my life ...
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