I must admit I am very embarrassed to think I have not done a blog post since last September. I do apologize to all those who have been following this blog for my lack of attention to keep it updated. I will try harder in the future.
For this blog I think rather than talk about an issue to do with caregiving, I will update you all on what has been happening with my mother and I.
I went 6 months (March-Aug) without seeing my mom due to strict visiting practices at her home. We were required to get tested every 2 weeks and having just finished radiation I did not want to risk standing in line to be tested. So during the summer, Mom and I enjoyed a few outdoor visits albeit through a large sheet of plexiglass and wearing a mask. I can’t explain how wonderful it was to see her again in person. As the days and weeks passed into Fall, it was getting too cold for outdoor visits. So I took the plunge to get tested. The first time I went I waited 5 hours in line. It was disheartening to say the least. But thankfully, the location changed, appointments had to be made and the wait became half an hour instead of hours and hours. The rules were that you had to sign in, be screened, go directly to my Mom’s room and not leave until I was ready to go home. No interaction with other residents or going out in the hall was allowed. But it was all worth it to see Mom again in her little abode, me in her big armchair and her settled on the side of her bed with her head on her pillows of her raised bed. We had lots of great conversations and times together but I could tell she was not who she was before Covid 19 had hit our country. She was lonely, very clingy with me, her cognitive abilities had lessened to the point where she had a lot of trouble getting her words out and making herself understood. This was frustrating for her and for me as I watched her struggle. Then in late October she took a turn for the worse. Lots of bad days, many shortness of breath spells, dizziness, double vision, and no strength. After a number of talks with the doctor we agreed to change her medications around and try a new pill. This indeed seem to help and she started to have better days.
Meanwhile, I had started back to work at the library for the first time since the lockdown in March. Because of having cancer and then radiation I was off for many months and started back Sept 22. It was very hard. I was so exhausted after a shift even though they were only 4 hours long. I had to take short breaks during the shift just to get through. Going back to work meant I could not visit Mom as often as I could not manage physically to work a shift and see Mom in the same day. This meant I was only visiting her 3 times a week. Mom found this hard but seemed to understand I just couldn’t do all that I had done before having cancer. She often let me know though, that she wished I could be there more often and this brought on a lot of guilt feelings in me. I knew I had to take care of myself or I would have to quit work and seeing her. I struggled to make the most of our visits together bringing her the cookies she loved, magazines, treats, whatever I could think of to help her cope with the isolation she felt. As the fall months progressed, she continued to quietly, almost unnoticeably decline. Only a daughter’s loving eye could see the changes. She stopped reading, she had more trouble speaking, she was forgetting more, she spent much more time just lying on her bed. Her dizziness had increased and some days she could hardly move her head. One of her most favourite nurses whom she had come to love and rely on very suddenly retired. This was a blow to Mom. She does not react well to change with her suspected autism and many other staff had changed as well. She felt more abandoned. She often got staff who did not seem to understand her and who did not endear themselves to her. She often lamented about the staff. They did not mistreat her but just were so overworked and stressed that the loving care did not shine through in their actions. Mom continued though, to thank God daily for her room in the home and her care. My Mom is one of the most thankful people I know.
Nearing Christmas, our visits took on a new form. Mom often would snooze or lie with her eyes closed while I just drank my tea or fiddled on my phone or took the chance to nap myself. Mom just wasn’t feeling good most days. Everything was an effort. Even pulling the brush through her hair or going to the bathroom would put her in a severe shortness of breath spell. Christmas day, determined as she was to open her presents I had brought her, every rip of the paper ripped away her strength. She could hardly manage it and despite my pleading to leave some for later she was adamant that all the gifts would be opened. And she did it but at what expense?? She slept a lot of the rest of the afternoon.
My conversation most often with my Mom now, was to tell her that she did not need to talk but to just close her eyes and rest and that I would stay with her and be with her to keep her company. We don’t talk much now. Once in a while we have a good rip roaring talk and then later she is snoring away – exhausted from the effort.
I think the hardest thing for me is watching her fail. And it is so slow and agonizing for her. And for me. She wants to go home to heaven. She tells me that pretty near every day I go see her. So on a really bad day, I am a mess. I am thinking maybe this is the day she will go home and all her suffering will be over and then I panic wondering how I will ever manage without my Mama. Back and forth I go like a frantic yo-yo with emotions spinning and heaving.
She fell the other day. Her legs just gave out on her when she was up to go to the bathroom. She’s getting weaker. I get more afraid. Then on another day she was looking up her birthday on the 2021 calendar. Her birthday is April 11. She was looking at Feb. 11. She couldn’t remember her own birthday. Warning bells rang in my head. This shouldn’t be happening. She has always been so lucid. Then yesterday we had a great talk about some of the goings on in the USA. Mom knew who the Democrats and Republicans were. We had talked about them many times. This morning I mentioned something about the Democrats and Mom quickly asked me, what were the Democrats??? More warning bells. Louder this time. These things are happening too often.
So that is where we are in the beginning of 2021. Our city is in a lockdown and I have to get tested every week now to see Mom but despite hating getting tested, I do it because I couldn’t bear not to see my mom. I have heard so many people expressing their joy of having 2020 over with and they look forward to 2021 with new hope that this vaccine will bring an end to Covid 19. Unfortunately I don’t have the same hope for 2021. My mantra is ” One day at a Time” these days. Although I would LOVE to see an end to Covid 19, 2021 also has the very real potential to see an end of my dear mom. So I peer into 2021 with trepidation and very mixed emotions. It feels like I am watching a horror movie and I have my hands almost covering my eyes and i am just peeking out through a slit in my fingers ready to shut them tight if a real scary part comes. That is 2021 for me.