A caregiver writes:
Why do I feel so tired and feel bad that I am tired. I have been taking care of my husband for over a year and a half, I have not had any help … Maybe you can tell me what I am doing wrong.
Read the rest of the (unedited) question with comments below.
TCV answers:
When I read your words below what repeats in my mind is:
YOU NEED A RESPITE … or else!
You are doing nothing wrong unless caring too much is wrong. You care and you’re trying to fill your husband’s needs.
Yet, you are being overwhelmed and overburdened and if you don’t take time to get away — even for an afternoon, I doubt you’ll be able to provide care for long, much less survive.
Too many caregivers die before their loved ones.
Do you want to be one of them? What will all your effort be worth then?
Check into adult day care for your husband and a support group for you.
The drive into town one day a week will be worth it. Your survival is worth it! He can go as a “volunteer” or to “work.” Use whatever explanation you need to persuade him unless he is clearly aware. (We focus mostly on dementia and loss of cognition at TheCaregiversVoice.com.)
Think of caregiving like running a marathon — 26.2 miles. You need support along the way (for water, fruit, and even bathroom breaks). You can’t do it alone. I know, I’ve done both.
This caregiver’s question is posted exactly as The Caregiver’s Voice received it in order to show one example of how an overwhelmed and stressed-out caregiver reaches out.
Notice the lack of spaces between her sentences.
Life seems to run on for her with no hope for even momentary respite.
This caregiver definitely needs support and some time for rest. There is just too much is going on in her life right now.
An overwhelmed and tired caregiver asks:
Why do I feel so tired and feel bad that I am tired.I have been taking care of my husband for over a year and a half,I have not had any help cause he did not want anyone else but me.i have had to live out of our town ,I do all the driving to the Drs. That are all out of town…I have almost lost him to AML, he has been so sick I feel so bad for him and I have caught myself doing everything for him.i feel that he could do more ,but he wants me to do it.we have had a lot of set backs, I lost my dad during this all I could not help my mom like I wanted too.she understands too,now she is living at my brothers cause she is real sick too.i have so much troubles with my olds kids…and the list goes on.i know my husband can do more for himself,but I have been so use to doing it all,that he was not getting better,cause he would not do anything ,I feel more like his mom not a wife,that makes me feel so rotten,I stay mad at myself.i cry a lot I feel so ove loaded. I just needed someone to talk to All I have to talk too his family ,don’t get me wrong his sister was my rock when he was in the hospital for mons.he had a transplant bone marrow.We live by all his family my kids have moved here to be my me,way before all of this,I am close to my daughter,and I have all 3 of my grandkids here,that’s what keeps me going. I am sorry for laying all of this on you..but maybe you can tell me what i am doing wrong…
Focus on the 3rd tip in (click on) 5 Tips to becoming an Alzheimer’s Whisperer.
If we are to survive as caregivers, we must get help. We can’t do it alone. A respite for a day can make all the difference. Respites for a few minutes will help us to survive one hour to the next and day-to-day. What is YOUR life worth?
Brenda Avadian, MA
Alzheimer’s / Dementia Caregiver, Expert Spokesperson, Coach, and Author
Editor, TheCaregiversVoice monthly Newsletter and The Caregiver’s Voice Book Review
Jayne, thank you for sharing your personal experience. This will help so many more caregivers who feel the same way. I also appreciate your comment about feeling the difference of one hour alone. Yes, we all can learn to do this…it’s hard, but we need to in order to survive. Again, thank you.
I truly understand. It is so difficult to ask for help, because that makes the illness even more real. I struggle too with the fact that my husband does not want others to help. He does not realize how sick he is and the demand that it has on me.
I recently tried introducing a professional care giver, and it had such a negative effect, that I stopped it. I just did not have the strength to handle the repercussions.
I see and feel the difference when I get just one hour alone. It really is a craft that we must learn.