It has been four weeks, since my Mama went to sleep and did not wake up. I had a call a few days before that, and the hospice nurse said she had a cough and her oxygen levels were low and it was suspected she had pneumonia. Of course, my fear was that it was COVID19, but I was assured that it was not. They had ordered a chest x-ray and would start antibiotics. When the x-ray was read, it was a mild case of pneumonia, but they had caught it early and it seemed that she was expected to recover. I said I would come (I am 1800 miles away) and was told, if it takes her you won’t make it and if she is better you won’t be able to see her because of COVID restrictions.
She was a dementia patient in Memory Care and under Hospice care for the last fifteen months. She was frail and very tiny but had stabilized and seemed to be holding her own. She had several falls, one shortly after she went to Memory Care, which resulted in a head injury, but she recovered and was stitched up and sent back to her little studio apartment.
Last January and February, almost exactly a month apart, she fell and hit her head. Both times she was sent to ER. The first time she was checked out and sent back to Memory Care and the second visit they discovered she had aspiration pneumonia. They kept her in the hospital for a couple of days and then she went back to her studio.
The frequent falls were of concern and when I visited in early March, I met with the staff at the Memory Care and the Hospice Nurse and asked what could be done to protect her. They allowed me to put a security camera in her room, so I could monitor her activity and Hospice provided her a low, concave hospital bed and fall mats. The situation seemed to improve.
The last time I sat with her, on Friday, March 6, we listened to music…her favorites, John Denver and Chattanooga Choo Choo. She wasn’t sure who I was, but knew I was familiar. She was very peaceful and said she had no pain and said she was doing “pretty good.”
I had stopped telling her Good-bye; instead I would say “I love you, see you soon.” She always thanked me for visiting and sometimes said “thank you for loving me.” I would hold her hand and it seemed to comfort her and make her feel safe. Sometimes she thought I was her sister Juhn or her sister Janelle and would ask about her Mama. I would always reassure her everyone was doing okay and she didn’t need to worry about them.
The March visit had been planned to see if it was possible to move her and my Daddy to Phoenix. The Hospice nurses saw no reason that they should not be moved, just that my mother would need to go via transport. Daddy was cleared to fly or make the road trip.
As Mama often said “it seemed like a good idea at the time.” They would be close to me, in a better climate and I could check on them frequently. However, I had not allowed that while my timing is sometimes not the best, the Lord’s timing is perfect and that is why the move never happened.
I immediately started the process of moving them to Phoenix. I had investigated numerous times and had asked them to move here since 2012. We got close a couple of times, but in the end, they always had a reason they did not think it was time for them to move. In March, Daddy agreed that he would do whatever I thought was best. The plan was to move Mama first and get her settled and then move Daddy. The paperwork was started and she was scheduled to move mid-April. They were going to be able to share an apartment and it was only a mile from my house.
When I flew home that Friday night in early March, people in the airport were already starting to wear masks and the man in the middle seat next to me, wiped down all armrests and tray tables in our row. I have a shawl that I always have in my carry on, and wrapped it around my face and nose.
On March 11, all visitors were prevented from entering the Assisted Living/Memory Care facility where my parents were living. At that time, I stopped the process of getting them moved to Phoenix, as it was too much of a risk to them and I did not want to chance having them in two different places. Much to my concern even Hospice nurses and other hospice caregivers (including Social Worker, Chaplain, Aids and volunteers) were denied access except under extreme emergency, which was to be determined by the Facility Staff.
After the initial lockdown and COVID19 testing, my Daddy was allowed to visit Mama, although at times only brief, masked, socially distanced visits. He was her only link with the outside world and the family she had devoted her life too. My son and daughter in law window visited frequently with Daddy, I tried Facetime and phone calls with him, which because of his hearing loss sometimes it worked and sometimes it didn’t. Window visits would not work for Mama, we determined it would only be more confusing. I tried FaceTime and phone calls to her, but even facilitated by staff, they were just too confusing. She did not understand, what was happening. Except for seeing her in her room, through the security camera, I was cut off from all contact with her.
They celebrated their 78th wedding anniversary at the facility in May. The staff had decorated a room and they were able to eat together, but not touch. No family was allowed to visit.
On June 1, porch visits were allowed, but limited to two per day for the entire facility and by appointment. My Son and daughter in law, started to visit and were able to see their Grandparents, but with masks and six feet apart, no touching. My brother went in June to take Daddy to the dentist to have a tooth pulled and after taking him out, had no access to him, as Daddy was quarantined in his room for two weeks. My brother saw our Mother once. We were concerned that my Dad could not see my mother for two weeks and she was only allowed one visitor per week, by appointment. My other son and family visited in July, but were limited to a brief porch visit.
I went back in mid-September to take my Dad to the dermatologist and the cardiologist. They only time I was able to visit with him was in the car on the way to the appointments. I was able to “porch” visit with my mother twice during that two weeks. The first visit was very good. When they brought her out she said “that is Linda”. I am sure she had been coached on who I was, but I think for that short time she made the connection. We had a nice conversation, nothing like the hours we would talk in the “old days” but it was a very pleasant visit. I had taken her two little dolls that she had made and when she looked at them and where I had written her name on them, she said “Jacque that is me.” She remembered that she “use to make a lot of things” and had made these dolls. She was delighted that I was going to leave them and she could keep them in her room.
The second visit right before I left was upsetting. They brought her out to the porch but it was a cool windy day. I could tell she was uncomfortable and cold. I asked if we could visit inside and was told “no, against the rules.” I explained it was too cold and she was so fragile, but was told, maybe next time they would have a place set up for us to visit inside.
I asked if she wanted to go inside and get in her recliner with a blanket and she said “yes”…I told her that I loved her and would see her soon. She smiled and said good bye. I could not hug her or hold her hand or even touch her. That was the last time I saw her.
I had planned to go back for Christmas and Daddy’s 100th birthday and was again starting plans to move them to Anniston. I knew they could not make the trip to Phoenix but I was still hopeful we could get them to a place where family could visit frequently.
I was sending them letters and cards every week, telling them to hold on, I was coming soon. I sent Mama the last card on November 9th, telling her I would be there soon. It was never opened.
In the four weeks, since Mama died, I have wondered what we could or should have done differently. I am thankful that I did not start the move to Phoenix, which would have in all probability separated them. I have experienced a myriad of emotions…anger, frustration, grief, sadness, hopelessness.
We were able to get my Dad moved to Alabama near my son and family two weeks ago. It has not been a smooth transition, but I think it was the right choice. I am headed back there in about ten days, to see my Dad and be there for his 100th birthday. Daddy has faced this with dignity and acceptance. He fulfilled his promise to take care of my mother and to always be there for her. He sat with her on the afternoon before she died the next morning. We did not know that the end was so close, although maybe we should have.
My daughter in law said in October that Grandma had recognized her on a visit, which had not happened in a long time. Mama continued to know my Dad and frequently knew my son, who visited often. Daddy had even said her memory was better and she was more conversational. About ten days before she died, I woke up in the middle of the night and sat up in bed. The next day I said to Patrick, that I didn’t think Mama would live to move to Anniston. Somehow I knew I would not see her again. I had read that often in dementia patients, they will have a period of lucidity not long before the end.
My mother’s last eight months are of great concern to me. I think it was cruel to cut her off from her family and hospice care and confine her to a small area. I advocated for her care, the best way I knew how, but I continually ran into a wall. I was told she was being “protected” I am angry that she was cut off from those who loved her and it didn’t change anything. She was denied services and care that had been promised and that were needed.
I am thankful that Daddy was there with her. She always said he was her hero and he proved to be worthy of that title.
I have struggled with how to cope with the situation and I am trying to forget the end and remember the Mama of ten years ago. The fantastic Grandma, the Mama who always baked a pound cake when anyone was coming, who would read poetry, who could quote the Bible and Edwin Markham, who loved birds and flowers. A lifelong Christian.
In the last few weeks, I have seen and heard from the people who loved her, who were influenced positively by her and who have frequently remarked about her beautiful hand written notes! In cleaning out her things, I was amazed by the correspondence, most of it hand written, that was among her papers. She wrote drafts of everything and then revised and finally copied in her beautiful penmanship and sent out to the family and friends. She loved pretty notecards and notepaper and I would frequently send it to her as a gift.
About a week ago, I posted this on Facebook with a picture of the nameplate
This is my Mother’s name plate. She only worked a few years and in the late 60’s she brought it home.
It always sat on her desk or work table at home.
My boys would ask “Grandma, why do you have your name on your desk?”
She would laugh and answer “When I am old and don’t remember who I am, I can get up every morning and look at my desk and it will tell me.”
When she went to Memory Care, we took her name plate and put it on her desk (with her pencils, pens and note paper)
We cleaned out her room a couple of weeks ago and it was there and I brought it home and it is now on my desk.
A lot of her memories were gone but until the end she recognized her name and knew who she was.
I look at her name every morning when I go to my desk to write or handle “business”.
I am focusing on remembering to forget the negative, the hurt, the sadness and the sorrow. I am trying to write more notes, send more cards, watch the birds, work in the yard, spend time with my Grandchildren and do the things that she taught me bring happiness and joy.
She left a letter that I found at the house, saying if she went before “the Old Vet” to take care of him until they could be together again.
I am trying to do that, with the help and support of my family and friends.
“Love is patient, Love is kind…Love NEVER fails”
Peace,
Linda
Musings of This Old Girl 