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?
I am in physical therapy for my knee to hopefully prevent surgery. That is giving me some motivation to eat better and exercise more. With that I stay out of bed or off the couch more. But you talk about motivation? I have a desk/dining room table with un=filed papers on them for my by life and my mother's because they are just too much to look at all the time. They have been there piling up for almost a year now. I make sure the relevant ones get paid, or given attention, but I am just so over it all. My brother and I had a good visit with my mother last evening and I think she even recognized him, even though he has not seen her in a year, so that was real sweet to watch. All for now. Thanks for reading.
We went to her attorney today to sign her health care proxy and to transfer her house into my name (for Medicaid purposes), to add my her grand daughter as a beneficiary and to sign papers to move some of her assets to a trust fund that no one can touch. You would not believe some of her answers to the attorney when she was asked to sign! When he asked her if I was taking care of her, she said "not really" so he had to ask her the question in a different way! Then he asked her if my niece and I were honest and would she trust us with her money and she said "maybe"!! Boy, did I feel embarrassed and shocked. It's her independent streak I guess. The worst part of the signing process was when the associate started talking about assisted living and Mom's ears perked right up and she told asked him what that meant. Meanwhile, I'm shaking my head and mouthing "don't say those words to her". We managed to slide over that blunder.
I wish your mom a very happy birthday and I hope you all enjoy the day with her! If you would like to carry on this conversation privately, please feel free to PM me.
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.
You mentioned that your mom is in a self pay facility. I don't know where you live, but have to checked to see if your state has Medicaid benefits? I am working with my mom's attorney now to try and get my mom on it. That should save me some money. I feel for you. This is such a devastating disease. Please keep us posted.
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.
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!
Do you enjoy visiting with your mother? I think that should be your main focus while you are there.
I don't know much about pressure ulcers; have they tried using a sheepskin on her foot?