Mom Come Home
2019-04-02
“This is the day the Lord has made. Let us rejoice and be glad in it.”
That’s what I didn’t say over the intercom to wake up the kids in this morning. I hate today. Today Mom comes home on hospice. No more dialysis. No more steroids.
We had her kidney disease managed. Dialysis and diet could have kept that fatal diagnosis in check for a few more years. She was about to see the cardiologist for heart complications and a possible procedure. She was at risk for stroke but was taking the precautions that considered her propensity to fall. The diabetes was better. In fact the doctor told her to eat more to keep her blood sugar up. There was chocolate ice cream in her future. Then she caught a rare and usually non-fatal auto immune disease from out of nowhere. I knew Mom had limited time but we all measured it in years not days. The fact that the doctors couldn’t figure it out relieves me from the guilt of not recognizing the symptoms falling, confusion, cognitive impairment with dementia. It’s hard to make a definitive diagnosis, but Hashimoto Encephalopathy describes Mom’s last few weeks.
Most patients respond to steroids. They started steroids on Wednesday. Mom became more responsive but didn’t talk on her own. She could say “Yeah”, “Okay” and twice I heard “I love you,” when I told her I loved her. Each word a struggle. Every word and smile a treasure. The last day I heard “I love you,” was Friday. My sister Kimmy, Auntie Pat and Cousin Helmut came on Saturday. They saw Mom chuckle and smile but heard no words aside from “okay.” Were the steroids becoming less effective or was that brief period of improvement Mom’s huge effort to keep herself going until the family could arrive from out of town?
The doctor met with the family, a team of hospital staff, the family and mom in the hospital room. We had two options. Palliative care which is essentially going home with hospice to spend her last week of life in the company of her loved ones. Put her in a nursing home and pump her full of steroids for several weeks and subject her to other immune suppression therapies that don’t jive well with dialysis. Even if she overcame the encephalopathy it is unlikely that she would recover enough to ever come home. The side effects of the treatment plan could be painful and could lead to her catching something else. She would likely die away from us.
Mom had sat down with me and made her advanced directive. I had the chance to argue with her about her choices, but she was adamant about what she wanted and didn’t want at the end of her life. The family both near and far joined together to honor her wishes. Auntie Pat stayed by my side at the hospital when I gave them our decision. Kimmy sat with me as the hospice admission nurse explained the documents. I had the power of attorney and signed the papers, but the strength of the unity behind me flowed into the pen. It would have been so hard to go through yesterday alone and impossible without Mom making the way clear.
I have so many mixed feelings today. When Kimmy and I went to see Mom this morning and told her she was coming home, Mom bent her knees and leaned them against the guard rail. She was ready to jump up and go. I am eager for her to be back with us as much as I dread the end of the week. Monday was her last dialysis day. She won’t last long without it. She had the strength to live so long with so many things wrong with her but this last hit was the final burden. Pray for us as we comfort her and ourselves cherishing each moment.
Please also pray that daily life lets up a little bit. Justin slipped on some paper and cut his head on the corner of a table, blood everywhere. One child has stopped turning in homework. The four youngest kids stayed home from school with a fever. Basil and Esther are supposed to take a school trip next week. Mike was also due to travel but has arranged with his boss to postpone that trip. Our van broke down and needs a ton of repairs. Dinner needs to be made and there are dishes and laundry. As it has been from the day mom moved in, I wish she were the only focus of my life. Thank goodness she understands and is willing to be part of the beautiful chaos of family life.
Hospice delivered the hospital bed and set it in the living room in front of the television. The wall to her side has the beautiful artwork of our favorite Albuquerque artist Stella Zelenika. Mom’s favorite stuffed animals are arranged on the shelf nearby. Her own sheets are on the bed. Mom, we are ready for you. Come home.
2019-04-02
“This is the day the Lord has made. Let us rejoice and be glad in it.”
That’s what I didn’t say over the intercom to wake up the kids in this morning. I hate today. Today Mom comes home on hospice. No more dialysis. No more steroids.
We had her kidney disease managed. Dialysis and diet could have kept that fatal diagnosis in check for a few more years. She was about to see the cardiologist for heart complications and a possible procedure. She was at risk for stroke but was taking the precautions that considered her propensity to fall. The diabetes was better. In fact the doctor told her to eat more to keep her blood sugar up. There was chocolate ice cream in her future. Then she caught a rare and usually non-fatal auto immune disease from out of nowhere. I knew Mom had limited time but we all measured it in years not days. The fact that the doctors couldn’t figure it out relieves me from the guilt of not recognizing the symptoms falling, confusion, cognitive impairment with dementia. It’s hard to make a definitive diagnosis, but Hashimoto Encephalopathy describes Mom’s last few weeks.
Most patients respond to steroids. They started steroids on Wednesday. Mom became more responsive but didn’t talk on her own. She could say “Yeah”, “Okay” and twice I heard “I love you,” when I told her I loved her. Each word a struggle. Every word and smile a treasure. The last day I heard “I love you,” was Friday. My sister Kimmy, Auntie Pat and Cousin Helmut came on Saturday. They saw Mom chuckle and smile but heard no words aside from “okay.” Were the steroids becoming less effective or was that brief period of improvement Mom’s huge effort to keep herself going until the family could arrive from out of town?
The doctor met with the family, a team of hospital staff, the family and mom in the hospital room. We had two options. Palliative care which is essentially going home with hospice to spend her last week of life in the company of her loved ones. Put her in a nursing home and pump her full of steroids for several weeks and subject her to other immune suppression therapies that don’t jive well with dialysis. Even if she overcame the encephalopathy it is unlikely that she would recover enough to ever come home. The side effects of the treatment plan could be painful and could lead to her catching something else. She would likely die away from us.
Mom had sat down with me and made her advanced directive. I had the chance to argue with her about her choices, but she was adamant about what she wanted and didn’t want at the end of her life. The family both near and far joined together to honor her wishes. Auntie Pat stayed by my side at the hospital when I gave them our decision. Kimmy sat with me as the hospice admission nurse explained the documents. I had the power of attorney and signed the papers, but the strength of the unity behind me flowed into the pen. It would have been so hard to go through yesterday alone and impossible without Mom making the way clear.
I have so many mixed feelings today. When Kimmy and I went to see Mom this morning and told her she was coming home, Mom bent her knees and leaned them against the guard rail. She was ready to jump up and go. I am eager for her to be back with us as much as I dread the end of the week. Monday was her last dialysis day. She won’t last long without it. She had the strength to live so long with so many things wrong with her but this last hit was the final burden. Pray for us as we comfort her and ourselves cherishing each moment.
Please also pray that daily life lets up a little bit. Justin slipped on some paper and cut his head on the corner of a table, blood everywhere. One child has stopped turning in homework. The four youngest kids stayed home from school with a fever. Basil and Esther are supposed to take a school trip next week. Mike was also due to travel but has arranged with his boss to postpone that trip. Our van broke down and needs a ton of repairs. Dinner needs to be made and there are dishes and laundry. As it has been from the day mom moved in, I wish she were the only focus of my life. Thank goodness she understands and is willing to be part of the beautiful chaos of family life.
Hospice delivered the hospital bed and set it in the living room in front of the television. The wall to her side has the beautiful artwork of our favorite Albuquerque artist Stella Zelenika. Mom’s favorite stuffed animals are arranged on the shelf nearby. Her own sheets are on the bed. Mom, we are ready for you. Come home.