My mom had Alzheimer's for 15 years. After a few years of extreme emotional volatility, she settled into the angelic phase. It was a relief. I loved who she was. I was the only one. The rest of the family saw only the disease. They came away shocked from their infrequent visits. When she died, I felt I was the only one who missed her.
You can never do enough. She fell because her anenia was untreated. She was injured in a care facility while I was on vacation. I was flummoxed by dental care. She would not allow it, clamping her jaws shut. Her teeth rotted and I had to have them pulled under anesthesia. Every few months, there was a fresh crisis. She broke my heart over and over. I felt very selfish at times, unsatisfied with my performance. Fifteen years of stress broke my health, and I didn't even do a good job.
I, too, made a decision not to live with my mom. My relationship with Mark was new then. I did not think it would survive the unrelenting stress of living with Alzheimer's. I employed three people in shifts to take care of her at home. Later, I found good facilities that specialized in Alzheimer's care. I worked my butt off to pay for it. Still, it was not family. She was housed in another city. Our area is too expensive and we paid out of pocket for care. With distance, work and health problems, not to mention lethargy, I sometimes didn't see her for months.
My mom died quietly in her sleep. I had been seeing her more often, and I had the foresight to put her on hospice. There was no emergency room, no attempt to prolong her life. We drove in the middle of the night to sit with her. She had gotten so small. She was going to be picked up by the funeral home for cremation. I took off her diaper, put on a fresh nightgown, combed her hair.
Then I had to decide what kind of daughter I had been. Everybody else thought I was heroic. I thought I was a fuck-up. Was I going to burn in a hell of my own making? Was I going to forgive myself for being human, flawed, tired?
I was 35 when my mom got sick. That was 22 years ago. I'm just now starting to live for myself. Whatever I did wrong, I paid for. Even I have to admit I did a lot right.
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Comments
Kisses,
Marcela
No guilt, please, Sirenita. Your mother wouldn’t want that for you, nor do you deserve it. This is a bit hypocritical coming from someone who was saddled with almost unbearable guilt following my grandma’s death—about procrastinating to send a belated birthday gift, about failing to respond to a letter quickly enough, having received it while I was the in the midst of preparing for an exhibition while also working full-time. I thought there would be a tomorrow, but there wasn’t, and the guilt was almost as intense as the grief. Now that it’s been nearly two years, I’ve come to realize my grandma would be mad at me for feeling guilty, knowing all too well that she was exactly the same way. A few months after her departure, I found a letter she wrote that started out saying, “GUILTY! Guilty! Guilty!” lamenting how badly she felt for taking so long to write us, which is precisely the sin I had been beating myself up about. Finding that letter was a form of grace, and it prepared me to let go of the guilt and simply grieve.
—Melissa (also of metaness)
peece,
dj
You said that you were the only one who missed her, how much would that caring mean to someone? I know that that would be huge with me.
It sounds like you killed yourself at times. You are so right, it gets bigger than anyone.
I think you were an awesome daughter. Perhaps you should write about this more. Why did you think you failed?
Thank you so much, for responding to my post. I feel honored.
Mr. M, I do believe you see a lot of love.
cartouche, I hope not. I hope your parents avoid this fate. Thank you.
Melissa, wow, what a story. It's like she reached out to you after she was gone.
Scupper, always good to see you.
Kathy, there's just no way to keep on top of it. There was always something. I just kept thinking I should have foreseen more. It was lonely feeling like the only one who cared. I found out later my sister also missed her, but for some reason -- her overwhelmed with work, me just overwhelmed -- we didn't talk. Thank you so much for coming by.
Considering memories of times like this, thinking about what might have been and what else I might have done, the Serenity Prayer works for me. Condolences on the loss of your mother and thank you for this wonderful post.
I've learned over the years that the sooner I forgive myself for my shortcomings, the sooner I can regain my balance. It sounds easy, yet it takes some serious practice.
My mother was living with me when she died of heart disease. I had given her a lot of heartache in my life and was trying desperately to make amends at the time.
It has been over 15 years since that day when I kissed her already cooling lips goodbye. With it I asked forgiveness and told her how much I had loved her and I have to believe that she knew.
Your mother's illness was certainly the central feature of a long part of our lives together. It kept us from doing a lot. But by caring for her, we did what we required of us. And it gave me a valuable perspective on the kinds of things this society values over others. Taking care of an old lady is not on the list of all the glamorous, well-paid, or desirable endeavors life offers, and it won't get any of the things this society offers. But it's essential.
I think Marcela said it for me; a big hug to you. You did good
It's a HARD path to walk, much less live.
Our family jokes that Nana killed Dad (since he was caring for her), and that she plans to out-live us all.
My cousin has now moved in to take care of "Bubbles", aka Nana. I think she is going through some of the same things you have - "Was I going to forgive myself for being human, flawed, tired?"
I think you are slowly forgiving yourself. But there is no reason FOR forgiveness - it's NOT YOUR FAULT.
The angelic phase they go through? I think that is the person they wish they could have been, except for fear.
Now? Now Nana is happy. She is angelic. Nana sees my cousin as she truly is - a fantastic person.
Your mom? From a stranger ... I think she saw you the same way. A fantastic person.
None of us want to be "that person". But given enough time? We probably will be. You did your best. And you know what?
Your best was HONESTLY good enough. I think your mom is looking down now, and saying, "yeah! THAT'S my daughter! She rocks! She did right. Don't you think so? I adore her so."
Mark, you were always there, you drove people, you held elbows, you paid, you waited. You deserve a medal.
"I think that is the person they wish they could have been, except for fear." Oh my god, yes. Thank you, Anni, and I'm going to start working on my angelic phase right now.
For the record, the phrase "the angelic phase" was coined by Kathy Knechtges on her original post on her mom.
Cartouche, so much said in so few words. A great summation of the pain and all the rest that goes along with this.