I am dealing with the guilt of needing to separate myself from the day to day emotional stress of overseeing 100% of everything for my mother who has had dementia for 9 years and has been in 5 facilities for the past 8 years. I am the power of attorney, the trustee on her trust, the executor of her will and the only child living close to her, about 10 minutes away. I also have a brother and sister but they are worthless. While I am not a perfectionist, I do see nuances of care that would not make any supervisor proud. The old adage of innocence is bliss is true, but when I visit mom and see the little things that they let slip through the cracks, when i am not there to advocate for mom in any way shape or form, then mistakes happen, neglect happens and injuries grow and fester. I literally could write a book, or open a consulting firm for all of the rules and regulations, and personalities I have learned. My deal here is that I am the only one putting any effort into managing my mother's affairs. She is in a private pay memory care unit of an assisted living facility which has a decent reputation. Not the best, but affordable and certainly not the worst. I have been with them for close to 4 years now and know all the staff intimately. Our conversation extend beyond mom's care, to salaries, care for other residents, shift changes, other resident's problems etc. They consider me part of the family they feel comfortable enough to talk with. For the past 8 years, I have moved my mother 5 times and across state lines. I have had to negotiate secondary insurance for her pay her bills, do her taxes, order and deliver incontinence supplies, lotions, gloves, changing pads etc. I negotiate her secondary insurance each year as well as any new drug plan. On top of all this she had developed a larger foot ulcer/ sking disease from constantly rubbing he foot on the bed, no matter how we position her. That large open gaping wound is now 10 cm x 6 cm and growing, It an best be described as a pressure ulcer. It gets re-bandaged every other day and we see the wound specialist every month. The wound will probably never heal as it is on the foot where blood flow is less. All this stress had made me depressed, get a full head of grew hair, became over weight, and lazy. I want my life back where I can enjoy it where I don't have to feel guilty for now seeing mom every other day. Or am on a waiting mission till she dies?
At this point I have to laugh. And give up on the assisted living for now. I'm sure it will take a serious fall (more so than the last one where she broke her pelvis, but refused to stay at the hospital for a few days even) to force her to make the transition.Thank you so much for sharing some of your story.
Sdbike, if it makes you feel any better, just being with an aging parent whose condition you can do nothing about would wear anyone down. I know a very kind and patient Catholic priest, who spent most of his ministry as a hospital chaplain. You could not swing a rag doll in this community without hitting someone, Catholic or not, who would sing Fr. D's praises -- how good he was to their sick or dying loved one, how much comfort and support he brought to the family, what an excellent listener he is, how he was able to line them up with needed resources, etc. This same wonderful man had a mother who suffered from dementia, and she was eventually placed at a local NH with a memory care facility. He told me that the hardest thing he ever had to do was visit with his mother for one hour each day, which was how he used his daily break from the hospital. He said he never knew what he was going to find when he arrived for his visit. His mother struck caregivers, broke windows, and more. He said he couldn't wait to get back to his patients at the hospital.
About starting a caregiving company: My sister and I were talking just yesterday about how maybe we need to start an "old people's co-op" with ourselves and friends, where the members pool their resources, living together or close to each other, and hire staff to care for them! Like a 60's commune, but with "Depends" and daily prune juice.
I have a career, a mortgage and my own retirement to tend to. My mom is being cared for in a nursing home, and we kids and grandkids visit.