Losing Mom ... things I never expected.
Ma on her 80th birthday, Oct. 16, 2009
My 80 year old mother passed away on August 25, 2010 at 9pm. She tripped on a curb and fell on August 18 at the park and broke her hip. She had an operation to repair the hip on August 20, but her cardio doctor warned that there was about a 20% risk that her heart would not be strong enough to withstand the process. She had a stent operation involving one ventricle in Sept. 2007, and needed more, but due to her age they only repaired the one.
I’d been caring for her since her heart operation. She also had onset dementia which became evident about 9 years ago. The decline was slow, and her dementia was about borderline mild/moderate at the time of her death.
I was her health care proxy, and since October 2007 made her health care decisions, took her to doctor’s appointments and managed her meds. As she went from her home to assisted living, then 2 psych hospitals, then a nursing home, my role would adjust.
The source of my anger lies with the general misunderstanding of what dementia is and how it should be treated. No one that I came in contact with in these institutions and even elder services agencies knew how to work with someone with dementia. The path she found herself on was one of medical restraints, condescension and abuse. It took a little over a year and a half to get her back home, because once a person is labeled a “safety risk” “wanderer” “exit seeker” “behavioral disturbances” and so forth, let’s just say these labels followed her around and became increasingly exaggerated. Family disappeared from her life almost entirely, and old friends had stopped coming around years ago.
She was a wonderful woman who just wanted “… to go home.” After 5 months of C-Difficile, Congestive Heart Failure and UTI infections in the nursing home, enough was enough and I was able to arrange to bring her to her home on June 12, 2010. However, I just about had to carry her into the house, and, she had two subsequent trips to the hospital to clear the C-Diff, but after that we began to see a clearing.
She started to get stronger, the diarrhea stopped, we bought a puppy, we were going out every day. She loved being in the car and going on a long drive. She loved sitting in her yard and getting some sun. When she tried to go outside at the nursing home, someone would "redirect" her as it was a locked unit.
You see, the things she liked to do, you can’t do in a nursing home. Hey, she’d rather I wasn’t even in the house, so that she could enjoy her solitude like before, but we both decided to adapt, adjust and cope as best we could. It was a change for me as well. If you’d have told me I’d end up a live-in caretaker for my mother 20 years ago, I’d have had a panic attack! And you know … we found ourselves at the beginning of a nice life together.
At home she could go outside whenever she wanted, could sleep in her own big old bed, generally had the run of the place. My "redirection" policy took on a different tact, one
of loving care and connection, reiterating discussions, touch and empathy. No I'm not a saint by any means, believe me there were some exasperating moments! But generally, it was good but all too brief.
When things got really hectic or difficult, I’d refer to my book “The 36 hour day”. One minute she’d be organizing the kitchen more neatly than I had been doing it (after all she had 25 years to hone her approach); the next minute, she’d be lathering peanut butter on the toaster oven. I guess the point is that I really did have to be there 24/7. And we were working ourselves towards a day care situation to free up my time a little. She wouldn't allow day aides or visiting nurses in the house, didn't see the need :).
Being 58, it was the most important commitment that I’ve made in my life. But her demise happened so suddenly and she became my whole life. I loved her deeply, more so than anyone in my lifetime. I feel completely lost without her and nothing that I’ve ever done in building a career seems significant by comparison.
I walked with her for 15 years since my dad died, then committed to her care in October 2008, when I had to have her removed from her home to go to assisted living; then spent the next year and a half getting her back home. Everything outside of our relationship has been a total nightmare; constant battles with agencies and institutions, siblings refusing to help. I got really tired, still am.
I only had her home for 2 months when the accident happened. But she did get home … and when her kidneys failed in the hospital after she had a heart attack following the hip operation, she came home again for 2 days. This time my younger sister was there and we worked with hospice making her comfortable and pain free, and giving her a chance to rest from the whole ordeal. Once she reached the hospital after her fall, she never spoke again, except to call out “Mary, Mary, Mary … “ before the operation.
On August 25, at about 8:55pm, her breathing changed, it slowed dramatically. My sister and I were on each side of the bed, each holding her hand. We said, “Go into the light Ma, it’s ok!” “We love you!” “I love you!” She mouthed the letter “L” twice and passed.
Today, I’m totally depressed and it’s just about impossible to start making plans, although the situation is urgent. I’m still in the house. Her room, the kitchen and dining room are like a museum. My bed is in the living room. I know I have to leave soon, but don’t know where or how. I do savor her in my thoughts, knowing that once I begin moving forward I won’t have her bedroom to relive the wonderful memories of one on one with my mom 24/7. You see, when you help your mother bath and dress herself, help with bathroom hygiene, when you help her wash her hair, clean her teeth, fasten her bra, help her pull up her panties, and you’re a guy … you’ve learned that you can do it after all, and that the experience is most fulfilling. Now ... I just miss her.