My mom died of Alzheimer's. She died at home, in her home of 45 years. She had a graceful exit from this world, for which I was very grateful. However all of this was not at all easy.
There were things that allowed her to stay at home.
I took care of her, and we also had a nanny for my son, who ended up caring for my mom also. My mom did not wander, turn on the stove, or get up out of bed after she went down for the night. She had to be encouraged to get up off the couch to come to dinner but ate well, and mostly had quiet, pleasant days.
She was organized in her affairs, had a will, and had named me power of attorney well before it was needed. This was notarized. Also well before needed, we went into the bank and signed something so that I could managed her affairs if she was not able to do so.
I needed outside help for her about 3 months before I actually got it, and before I got help I found things very very hard. She was not continent and I found this very difficult- I was doing loads and loads of laundry but also angry that things were so hard. I had applied to have a social worker visit the home, and when the social worker finally came 5 months later, we were able to arrange outside help very quickly. But I wish that I had applied for a social worker many many months before I needed help, so that I could quickly arrange more help when the time came. Because it was coming. You cope for a while and then it becomes too hard.
With regards to advanced directives, many years earlier she was clear: "when my time comes, my time comes. No resuscitation." I supported this. Towards the end of her life, I am quite certain that she had a stroke. We did not go to the ER. We could still manage her safely at home, and so we did. There were people who told me she should go to the hospital. I work in a hospital. I know what would have happened: hours in the ER, followed by an admission which would likely be very lengthy, followed by placement in a nursing home. This was the opposite of what she wanted, so we didn't do it.
Death at home means that there was decline up until death. There was step wise deterioration. Just because everything can be done, like calling an ambulance, does not mean that everything should be done. We assessed, readjusted, coped. I asked the social worker to approve more hours from the caregiver agency.
One of my friends told me: when the person changes are month to month, the person has months to live. Week to week, they have weeks left. Day to day, then end is very near. This is what began to happen.
It was harder and harder to get her to walk up the stairs to bed. We ordered a bed for the downstairs TV room, and that is where she stayed. She was happy to have her bed there, and to be able to watch TV from there, I could tell. It made me glad to make her happy.
We would get her to walk down the hall to the kitchen for her meals. Then she had a stroke and wasn't able to move her left side well, but we were able to manage with a wheelchair loaned to us by the angels at the care agency, Golden Homecare. We let her stay in bed a lot, and got her up into the wheelchair to go to the kitchen for dinner.
She began to have bedsores. A Golden Homecare staff member implored me to act quickly. I called the social worker and she arranged for a wound care nurse to assess and start a treatment plan which happened quickly within a few days. We were lucky that our social worker responded so quickly to our needs.
My mom became more quiet, didn't seem to understand very much, and could voice when she was unhappy about something, in a word or two; she would protest vocally, mostly saying no. Physically she needed to be bathed, dressed and changed. The care workers really liked her and cared for her gently. I helped with the transfers and the changes and my back became very sore, as she was not big, but not tiny. She sometimes needed to be fed. I cooked all of her favorite foods and left it for the caregivers when I was at work- ham and cabbage, rhubarb cake, and oven pancakes. She watched TV and slept a lot.
There were very nice times despite how difficult it all was. We brought her outside to the front porch through the summer, and into the back yard to sit in the sunshine. My son knew nothing different and loved her so much. We sat in the living room and drank wine (though she didn't) and listened to Glen Miller. We ate nice meals all together. Her best Finnish friend visited weekly, and even had all of the church members come to the house to sing hymns all together and we had a wine and cheese party with that. The neighbors came over for dinner and we all talked except my mother who was very quiet, though the neighbors had known her for decades and were understanding. Love thy neighbor is true.
She had her dinner one night, and Sandra (one of the amazing GHC caregivers) and I brought her to the living room to listen to some music, and then put her to bed after. She began to leave this world; I saw that she was starting to die. I asked her if she was alright several times and she answered by giving me one definitive, distinctive nod up and down. Then she went into a sleep that lasted for the next few days.
I called the social worker and asked if we could have palliative care. The social worker gets major credit here for quickly locating the palliative doctor and nurse, who were at our home within a few hours. They assessed my mother, who was in a coma, not rousable, but comfortable, if breathing a bit quickly. The prescribed morphine and midazolam to ease any discomfort, and showed me how to administer these medications.
We agreed that they would fill out a death certificate, and that I would call the doctor at the time of death. That way, there would not be an ambulance in my driveway, and the drama of explaining that this was an expected death and that there were papers not to resuscitate. Legally, a MD has to pronounce the patient, to confirm that death has occurred, and to fill out a death certificate.
My little son came running to me: "Mommy come quick Mummi opened up her eyes she's better!" We ran to her bedside and her eyes were clear and bright and she was looking at us. She didn't say anything but she saw me and my husband and son. It really was hard to believe that she was awake from a three day coma. We gave her a bit of water. After that she closed her eyes and her breathing slowed, we were all by her side, Finnish music was playing, it was very peaceful. I called my brother who had been there earlier in the day, and he came over, and our wonderful GHC caregiver had just arrived for her shift. We opened a bottle of champagne and toasted her. I asked my son how he knew to check on her right then and he said "my heart told me." They really did have a bond.
How did I feel? Sad and bereft, but accepting of my mother's death. She had a graceful exit from this world. We sat and talked about what had happened moment by moment, and how we felt, and comforted each other. We were glad that she had a good life, and was in her own home when she died. We toasted to her good life, that had run its compass.
We called the funeral home, and after a few hours the attendants came and took her away. We helped transfer her to the gurney. My little son was horrified that they zipped her into a black bag "how is she going to breathe?" Later, in an online feedback survey, I told the funeral home that if the family is all around they should change that policy to close the bag outside of the home or in the hearse, for God's sake.
