I need to stop caring so much for my mother with dementia. It is literally killing me. How can I get my life back?
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?
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Don't move her anymore unless it's a work thing for you and when you travel it's a long period of time or whatever your circumstances are.
Why are you going there daily? Visit like hospital visiting hours every 2-3 days. Your mom is being taken care of there, you are pleased with the place, let the staff do their thing.
One can't control everything and you will drive yourself crazy trying to. It's hard to adjust your standards down especially in a health care setting, so if you are feeling that your mother is getting good attention and care at this facility, good for both of you. Let it be unless her condition warrants otherwise.
Regarding the pressure ulcer, that is a pretty significant size. It will take months to heal. Try to encourage protein to form new tissue. I assume your mother's facility has RNs to change the dressing on that ulcer? That's important and wound care is a skill.
If I were you, get back to your life now, little by little try to draw away from the AL/NH (whichever it is). They will turn and reposition her and get her out of bed, dressed and fed.
Don't let your entire life be wrapped up with your mother's care. Do the best you can to see her but begin to relinquish the "all hands on deck " scenario to the staff there.
Get your hair done, pedicure, etc - anything that puts a tiny bit if not more focus on you as you count too!
You have turned your life into mom's life--caring for her and making her life "good" has taken from you your independence and joy. Maybe you need to step back and let the NH do their job--and find some things that YOU like to do.
I'd agree with the 2-3 visits per week. If things get worse with mom, they'll call. You are paying for all this care, let them do the caring. Some facilities welcome family "help" many are simply annoyed that family is stepping in and "criticizing" the care. You need to know which kind of facility she's in now.
And yes, your mom won't live forever. Nobody does. It doesn't sound like she is really even aware of your presence--and this isn't anyone's fault, its the way it is.
Stop beating yourself up over what you could or should be doing. Do what you can, be realistic, and get a life for you. You are pre-emptively mourning mom's passing, and that is normal, but it really just stretches out the grieving period and makes "living" for you very unpleasant and stressful.
How wonderful you love your mom so much. And how wonderful you have been to her! She must be very special to be so in the forefront of your daily life. BUT--she would want you to have a life.
As for the MIA siblings--pooh to them. You have had good memories with mom and they haven't. You're sure not alone in that.
At first I visited my dad everyday, then every other day, then every couple of days. My brother would visit on the days I couldn't but there were days when neither of us visited our dad and that was OK.
I have experience with pressure ulcers and the one on your mom's foot may never heal completely if she continues to rub it against the bed. There are what I call "moon boots" she can wear. It's a huge, squishy boot that attaches with Velcro and it's worn on the foot at night to protect the skin. We're talking a huge boot and most people don't like to wear them but if the staff can get one on your mom's foot your mom probably won't be able to take it off herself. The downside is that it's so squishy and foam-y that it's not a good fit and can come off on its own.
Try every 3rd day. Do some work on yourself with that time. You deserve it.
As to how to talk to your mother about moving into a facility, I will tell you that about 99% of all children who have to have this conversation will tell you they never knew what the meaning of stubborn meant until having that conversation. I can't tell you how many times I talked with people about how stubborn my mother was about wanting to stay in her own home and die, or about not wanting to wear the "I've Fallen But Can't Get Up" necklace, to getting mad at me when she couldn't find things and i told her exactly where they were and she would argue with me that they weren't there and I would patiently ask her to go to that drawer or closet and she would find the item and say "I hate it when you are right"!! I always loved that one. But it took over 8 years of visits to nearby facilities, invoking Susie Roman's name and advice, several falls and finally I asked her pastor (she used to volunteer at a church) to visit her and gently talk to her about the advantages of having professionals take care of her 24/7 so she would be safe and her children would not worry. She saw through that move like a person with x-ray vision. It was hysterical. While the pastor was in the house, I was out in the driveway waiting for them to finish their conversation. The front door opens and she steps out and says, "Don't you think I don't know what you are doing here, get in this house immediately". And the 3 of us talked. I think I was about 51 at the time and she scolded me like i was 10. In any event, the crowning blow as it were, was a fall in her bathroom while she was alone and she remained on the floor all night until the doorbell rang the next morning, and her part time CNA coming sit with her. When they saw all the bruises I got a call immediate and flew from California to South Carolina immediately and with a week she was all moved into a facility nearby that I had been secretly working with.
I hope it does not come to that with you, but it does take some creative efforts. I wish you well. Today is her birthday and the family is in town to celebrate with her.
As far as Don'tAskforHandout's comments, I could never in a million years resign from taking care of my mother. There is no one else out there in my family who could do what I have done or would pay as much attention or worry about the details as me. All that being said, i have given notice to the facility that I will be seeing mom only once or twice a week from now on when i am in town. They laughed and said they would believe it when they saw it and I told them I had to for my own sanity and they finally understood.
And guilt is probably not the best definition of what I am feeling. I feel a bit guilty that I want this all to be over with. I am jealous of my cousins who have their lives back. But in the end, I will be able to say that I was there for my mother in her time of need and was able to spend quality time with her, and I will never have to feel guilty about not doing enough.
I suggest that we must "tamp down" any feelings of guilt that we are not doing more - We are doing PLENTY.
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