My MIL has been totally bed bound for a year and her skin has been perfect. I have given her excellent care all along and have been proud of her skin.........like it was a reflection of my care. Well, about 2 weeks ago, a bedsore developed on her tailbone and rapidly - super rapidly - grew big and deep! I have had hospice services for 12 months and we were all surprised at the speed this sore came on. I went online to seek any and all advice for treating this thing and after about an hour on the internet, I left the computer in tears. Wow, such a stigma regarding this difficult subject. Lawyer sites popped up everywhere and every post pointed to poor caregiving. I have given my MIL excellent care for 2 years in my home and my spirit is crushed after reading these posts. In my heart, I know that I am doing all that I can. Yes, I am turning her every 2 hours, applying dressings, feeding her protein etc etc. Isn't there anyone on this site who has struggled with this despite good caretaking? I am almost afraid to bring it up as the stigma "makes me look bad." I guess I'm hoping to find some validation?
I helped take care of my mother in law who was and I know it is never ending work.
It helped me to write about it in a journal - where nobody judges.
I came to realize that what I was really feeling was way more complicated that guilt.
Guilt is appropriate if you've done something illegal or immoral, and you have absolutely not.
When you get a moment to think at night, get a thesaurus out and start listing all the feelings in there that apply to you. There are so very many ways to express being upset. Once you get going, it's not hard to let them just come one after the other. Get them all down on paper.
Fear
Anger
Resentment
Insecurity
Distress
Frustration
Worry
Anxiety
Helplessness
No control
Inadequate
Etc. You can do your own list. I found it to be so much more precise than saying I was guilty. If you can stop labeling yourself as guilty, and use other words, you may find that you aren't worried about what other people think as much.
And you can describe to them EXACTLY what it's like to do such a high level of caregiving and find that it doesn't all work out like on TV. Give yourself a break, and tell yourself that it's OK. You are doing all the best things and what's going to happen is what's going to happen.
The psychobabble term for this exercise is "unpacking", but it was really helpful for me to deal with everything coming at me at once and criticism - real and imagined.
The pressure sore has remained the whole time .......stayed the same no matter what. As a result of constant care, it's remained in a "holding pattern" but it's still the same huge, ugly gaping sore with drainage etc. Hospice nurses come twice a week. MIL is also prone to coughing and aspirating so all meals are stressful as I worry about her choking every time she eats or drinks. I've followed every "rule" advice, etc, etc. She's just hanging on forever and ever. She's lost a good bit of weight since February but I'm giving her very high protein things that she can easily eat..................
Anyway, about 2 weeks ago we noticed some discoloration in her skin about 3 inches from the pressure sore. Despite our efforts, that spot has now opened and we fear that it will become one giant sore. The battle between me and hospice and the pressure sore goes on.........................but I'm discouraged and exhausted. I don't know how or why she is still alive but the guilt is all on me. Now I have Thanksgiving coming and I really don't want family checking her out and judging me. They probably won't but it's another stressor for me. I am having dinner here because it will likely be her last Thanksgiving............ Yes, I thought that last year too.
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