End Stage Caregiving: When Love Is All You Have Left To Give

This is the story of my final two weeks with my late fiancee, Tracey. I have written about some of this in the Caregivers forum, as it happened in real time, but now I would like to tell the story in reflection. I hope that some of what I say may be able to help those who may be in a similar situation now or at some point in the future.

Full of hope that things would be better

Tracey was a 23-year survivor of SPMS, after a brief, 18-month bout with RRMS. She was twelve years into her battle when I met her, and after six years, I became her primary caregiver after she developed multiple stage 4 bedsores. By the time she entered her final month, she was completely physically disabled and had developed MS-related dementia. She had just returned from the hospital after a four-day stay to cure a UTI and severe dehydration. She looked better than she had in a couple of years, and I was full of hope that things would be better for a while. This was on a Wednesday. By Thursday, she was eating well, was coherent and smiling, and we enjoyed an evening of baseball and conversation. When I was bathing her, changing her wound dressings and dressing her Friday morning before work, all seemed well.

Tracey would not wake up

My mom was staying with us at the time and watched Tracey while I was at work. She just had to feed Tracey, help her with the TV remote, and just keep her company while I was gone. The morning ritual was exhausting for Tracey, so she would usually sleep most of the time I was at work. I was just getting ready to leave work when I got a call saying that Tracey would not wake up to take her afternoon medications and lunch. I rushed home to find Tracey unresponsive but breathing. Her head had slipped off the pillow, and was at a severe sideways angle. My immediate reaction was to straighten her head, and when I did, her face pushed over completely to one side. I knew it was either a stroke or seizure and called for an ambulance. The paramedics came, and told me what hospital they were taking her to. They asked if I wanted to come in the ambulance, or drive to the hospital and meet them there. I decided to meet them there, and this turned out to be my biggest mistake.

My biggest mistake

Tracey had given me the medical power of attorney several years earlier, and had a very specific do not resuscitate order should she either stop breathing or lapse into a vegetative state. Unknown to me, the paramedic inserted a breathing tube on the way to the hospital, claiming that her breathing had become very shallow, but did not stop. Had I been in the ambulance, I would not have allowed this to happen. Tracey and I had discussed many possible scenarios, and what she wanted done in each. When I got to the ICU, the doctors had also installed a feeding tube. She was unconscious, and being kept alive by artificial means, something which Tracey wanted to avoid at all costs if there was no chance of recovery. The pulmonary doctor told me that her diaphragm muscles had weakened to the point where she would not ever be able breathe on her own. When I told them to remove the tubes, they outright refused, since we were not married. I did not have the POA or DNR documents with me, so there was little I could do at that point.

My second mistake

When I finally produced the documents, the outright refusal turned into a series of "give us a chance to try something" requests. I had already been through this twenty years earlier with my dad. He was kept alive for a week after he stopped breathing, while the doctors "tried things". I reluctantly agreed to wait, and this was my second mistake.

The next few days were a series of very frustrating delays, as Medicare had now become involved in prolonging this situation. I reached out to the community here on this site, and I still owe a debt of gratitude to the wonderful people here who offered their support and advice. Finally, after Tracey's mom got involved and threatened them with legal action if they did not do what I asked, they agreed to remove the tubes, one week after she entered the hospital.

A wedding ceremony

When the tubes were removed, the doctors all believed that she would not be able to breathe on her own, but she not only did breathe, but regained consciousness and began to talk. We talked and hugged, and kissed for a few minutes when the doctors said they wanted to examine her. The hospital chaplain was there, and I took her aside and asked if she would perform a wedding ceremony. We had no license, so it would not be legal, but it would grant Tracey her greatest wish. The chaplain agreed, and performed a very short ceremony, with the doctors and nurses as happy witnesses. We talked for a few more minutes and said our final "I love you"s before she once again lost consciousness, this for the final time.

Tracey was transferred to the hospital's hospice ward, where there were no monitors or machines, only a morphine drip and some anti-seizure medication. After staying with her for a few hours, I went home to take care of a few things and get everything I would need for an indeterminate stay at the hospital.

Calls all over the world from relatives

Tracey had a very large extended family, including three adult children, two of whom I never met. I contacted two of her sisters, who helped spread the word, and soon I was getting calls from all over the world from relatives I had only heard about but never met. I kept in constant contact with her mom and one sister, who acted as a go-between for the and the rest of the family, so I could concentrate on being at Tracey's bedside. I talked to her youngest daughter, and told her that she and the other two kids should try to get there as quickly as possible to see their mom one last time.

Holding hands and talking

Although Tracey was unconscious and unresponsive, I often spent time holding her hand and talking to her. I knew she could hear me because her eyes would open a tiny bit when I talked. I talked of all the good times we had together, and how I would look after her pets, and finish the final book of poetry she was working on. I did not explicitly talk about her inevitable passing, but I told her in many different ways how I would miss her, how much she meant to me, and how much I loved her, and would always love her.

One last goodbye

Her kids arrived on Wednesday, and I left them alone to spend time with Tracey. In the previous two years, Tracey had only received two phone calls from her youngest daughter, and not a word from the other two, and she was very hurt by this. I was as cordial and sympathetic towards them as I could, but I did not like them. They went back to their hotel after a few hours, and came back the next morning to say one last goodbye. It seemed they didn't want to spend any more time there than they had to, and I was relieved to see them go.

Her 23-year battle was over

I spent the rest of the time sitting beside Tracey, holding her hand and telling her that it was time to stop fighting, and to let go. Her breathing had become too shallow to detect, and the only sign of life was the pulsing of the veins in her neck, which had become few and far between. Finally, the pulsing stopped, and the battle was finally over. I was as prepared as I could be, but still not prepared for the final moment. My two-week vigil was over, and her 23-year battle was over. Along with the sadness, a feeling of relief. For both of us.

Never stop loving.