Last Tuesday, we got a frantic call from my sister-in-law (SIL) that my Mother in law (MIL) was admitted to the hospital with pneumonia. She was in the ED and not doing well. My MIL is 91. My husband and I left work and headed over there.
The poor woman was in terrible shape. She could not breath, was very agitated, had a fever and was dehydrated. My MIL had been in hospice once before, but now was under comfort care, which my SIL had agreed to. Under comfort care, they do not do anything to prevent death, other than make someone comfortable. In the ED, my SIL did a 180 and had them do whatever they could for my MIL in the hospital. She was even agreeing to intubation if needed.
My in laws both had very well written advance directives and MOLST saying they did not want any intervention that would mechanically support their lives. My FIL had actually signed himself into hospice when he knew the end was near.
The issue is that my SIL has total control. She is her health proxy. This has been a source of consternation for her oldest brother who wants total control of everything. Over the death of their father, the wound widened and I do not think it will be ever resolved between the two of them.
Meanwhile, my MIL is on high pressure oxygen, nothing by mouth, and is hooked up to IV’s. We were told on Wednesday night to consider comfort care as her time was short. My SIL refused. They continued with nebulizer treatments and suction up until Friday when they said they would no longer provide suction other than in her mouth. They had been shoving tubes down her to help her clear out. She has dementia and is incoherent most of the time. Thursday, she was out of it all day. My SIL said she was just sleeping, but no one could get her to “wake up.” The staff was pleaded with her to change her level and release her. My SIL kept saying “what did they know?”
Yesterday was the day she had agreed to sign her over. We all went to the hospital, including two grandchildren. We spent the morning at the funeral home planning her funeral. When we got to her room, she was more coherent and was telling all of us to enjoy our lives. She told us to take vacations and be happy. It was hard to understand her so her granddaughter decided to be translator. I believe she was embellishing her comments a bit. We had a priest come in and do last rites. After that, she seemed calmer and would come and go. She kept looking for her husband and brother, both passed.
However, my SIL reneged on her agreement and said she was not going to put her in comfort care. She said she likened it to putting a dog down. The MD stopped by and said that he did not think she was in pain and another 24 hours would not make a difference. She took those words as to she was getting better.
They have been very clear to all of us that Mom will never come off the high pressure O2. She is at the highest setting. Since she is on that, she will never eat through her mouth. She is wasting away. I am waiting for my SIL to agree to a feeding tube and then all hell will break out. Her potassium was so low, her toes were a curled knot. I have had toes cramps and they hurt badly. They are passing mega doses of potassium via IV and they said they cannot keep doing that, either. She has aspirated pneumonia which means she choked on something. They also discovered she had a heart attack, possibly when she choked. Her infection has not improved, but also has not gotten worse, which my SIL is taking as sign of recovery. She is so weak and is wasting away.
I love my mother in law. I have only known her for thirteen years. When she started with the dementia, they moved here from Florida. At family gatherings, she was often quiet or nasty. She would change when I was alone with her and was always sweet, even when she repeated herself over and over. My SIL never stayed with her over night for all the times we needed it when my FIL was sick. I did. Even now, she smiles at me when she is awake. Yesterday was weird because she did not know my BIL’s wife even though they have been married for almost thirty years. They, my MIL and other SIL, have not gotten along for many years, stemming from issues my SIL caused. However, yesterday she knew me and was asking for me. That did not help with the hard feelings.
It has been a long week. I am spending my days and evenings with my SIL and MIL. They restrained her as she keeps trying to pull everything off of her. I take that as her way of saying “let me go!” The only time they would allow her off of them is if my SIL and I are both in the room. They put them back on when it is just my SIL. I have been doing touch therapy and it helps to calm her down. My SIL is rude to the care team. I am not and I am asking the right questions. A couple of them know who I am as they have worked with me at URMHC. In my own world, I am way past due for my Humira for my PSA and I cannot take it and go to the hospital. It lowers my immune system and that would be like an invitation for me to get sick. So my own pain level is through the roof and I am gimping pretty badly. But I get to go home at night and my MIL will never, so I buck up.
I understand the decision my SIL has to make is hard. But she is disregarding what Mom wanted completely. This has pissed off my brother-in- law and his wife to no end. It is very uncomfortable when they are around which has not been too often. Somehow, they are pissed at my husband and I as we are trying to not get into the fray and keep our mouths shut. My poor husband has been an family outcast most of his life, partially his doing and partially because he is so neutral when it comes to family issues. They love drama.
I put my Mom into Hospice when she had cancer and made preparations to bring her home to die. She died that night. I was 23 years old. It is a long story why the decision was mine. My other SIL had to do the same thing for her mother a few years ago. It was not an easy decision for either one of us to make, but in the best interests of our mothers, we made it. I get that there is always the concern about such a decision; the what if?
I am hoping today my SIL will do the right thing. They will give her morphine and turn down the O2. I honestly think it will be quick and I hope not too dramatic. When we left yesterday, my SIL said, “I wish she would just fall asleep and go.” She does not equate the high pressure O2 as what is keeping her alive. But, my SIL is not the brightest bulb I have discovered.
My BIL said something so cruel that I was stunned the other day. He said, “Mom chose her to take care of her and so now she is getting exactly what she deserves.” Nice! No one deserves to die like this.