Dearest Ones,
I'm overwhelmed with gratitude for all of your kind, heart felt comments. Thank you, again, for being so supportive, kind and loving. It really does mean a lot.
Since the Sunday seizure last weekend, mom has been declining. I suspect she is also having seizures in her sleep now. On Friday, she was with my niece and my sister (who took a day off work). My daughter was working that evening, so I was coming in to spend the late afternoon/early evening with her. When I got there, there were groceries everwhere. My niece was with my mom in the bathroom, cleaning her up in the shower. My sister brought me up to speed and explained that she had been doing ok most of the day. I had warned my sister that mom needed to be less active and resting more. They had had a very busy day. She explained that they were just looking at the bread shelves and suddenly, she looked back at mom and saw that her whole face had changed. She suspects mom had a seizure - because after that, she collapsed and lost control of her bladder. Her and her daughter had great difficulty getting mom to the car and home.
When my niece and my mom opened the bathroom door, she was holding my mom like a rag doll, because mom couldn't walk. While her steps have been laboured and slow, and her left side dragged from time to time, she had never before lost the ability to hold herself up and walk. With my sister's help, we set her on the walker and wheeled her into her bedroom. We gently dropped her on the bed. I dressed her and re-positioned her in a sleep position. I tucked her in. My niece left in tears, my sister in shock and frustration.
I let mom sleep and decided to give her an extra half dose of the steroid she is on when she got up from her nap. Her doctor had told me some time ago to administer another half if mom was having a bad day. When she woke up, she was disoriented - it was dark by now and she wasn't sure if it was day or night. She focused and then looked up at me and said "There is a bird pecking at my window ...peck, peck, peck". Mom loves birds, and even though I could hear nothing myself, I went over to the window to see and there was nothing there. I said to mom, well it must be gone now. She said it was because I turned on the lights. Then, she started to remember what had happened earlier - she told me she calmed down when she heard my voice and knew I was there.
So then, I said, can you get up? She had regained her motion and was able to shuffle out of bed and hold on to the walker. She wheeled herself into the bathroom. While she slept, I did some laundry and washed her soiled pants.
She seemed back to herself again....but shaken up. I stayed with her until about 10. By then, both my nieces were there to spend the night. Saturday, she seemed to have regained some of her composure. Still, I called the nurse to make arrangements for the Sunday visit.
We have a doctor's visit tomorrow, at which point we will discuss increasing her medication. The steroid could help to bring the swelling back down and improve the day to day quality of her life. I returned for the nurse's visit yesterday, and stayed with her until the evening, when my niece returned to spend the night. She tried to nap, but to no avail - her anxiety levels were higher than usual. While she tried to nap, I got online and researched the meds and for insight. I visited the brainhospice.com website and read about how the steroid could "rescue" the patient and afford better quality until the end.
When she got up again, we had a very honest discussion. She started it by saying that those little creeps in her head were really misbehaving this week.
She knows that she is deteriorating and that the time is coming. No more denial. I explained to her that it was very likely that there is some swelling around the tumors that may be aggravating her symptoms, and that the steroid could really help with that.
Right now, she is only on 4mg daily - I read that in some cases, patients were given mega doses to get the swelling to go down. I've increased her dose to 6mg since Friday, and I suspect the doc will increase it to 8 or 10 mg when we visit tomorrow.
The seizure that she had last Sunday is the likely cause of the increased swelling. The swelling puts pressure on the brain - but we can't see it because of the skull. So, the swelling impacts brain function - reducing her mobility and her mental processes. All we can do now is to focus on getting the swelling down to buy time and quality.
She is very frightened and anxious - making it hard for her to rest and relax. She started worrying again that we would take her to the hospital. We had to reassure her that we had no intention of doing so, unless she falls and needs medical attention for any injuries.
I'm prepared to spend more time with her, as I know she feels safe with me and trusts me to care for her. Her pleasure of enjoying her "alone" time will have to be compromised now, as I don't think we should leave her alone anymore.
Her vision is very compromised now - which bothers her tremendously. She got a large print book, but she finds the story tedious and boring. I offered to read to her anytime from the other book she had been reading, but can longer. She smiled her crooked smile. Half her face won't respond to her intentions anymore. Her left hand is becoming useless too. I watch as she tries to get her hand to pick something up - but it goes nowhere. I see the strain on her face as she fights to accept that her body won't listen to her to do simple tasks.
At night, I pray and ask for her passing to occur before she loses complete body control - the ability to speak, swallow and move from place to place in her own space. I don't want to see her suffer the indignity of becoming a prisoner in her own body.
In the mornings, I wake up and hope that the steroids will buy her and us more quality and more time together.
I'm going to need a four-wheel drive on my heart to get through this rocky terrain ahead.
Re the journaling - I am an avid journaler, and since I discovered the virtual hospice, this has become my journal. I've never journaled this way before. Sharing my journey with all of you is very therapeutic and much less isolating that jotting things down in a notebook. Thank you all so very much for being there/here - your compassion and encouragment make this experience more endurable and give me the strength to carry on.
Wishing you all a love filled day,
With infinite love, TrueHeart xo