Caregiving Backstage / Reflections

Reflections ~ Journeys, Great and Small

Originally published March 21, 2015

I see that I have been inattentive to my audience in my little alcove. Please accept my apologies. Life’s journeys have kept me very preoccupied of late and it’s time I express some of those experiences since they bear greatly on one of the themes in my rooms here: caregiving.

Way back in January I posted that I had made the decision to seek out a new home, a place nearer the ocean that both my spouse and I love so very much. It started with a day trip to Aberdeen, Washington in search of a place we could call home. It was the first time I had been out of the house to actually go somewhere since bringing him home from a hospital stay on January 9. Nearly a month at the time. A very odd experience.

I found a place that suited all of my requirements. A one-owner home that had been well cared for but never upgraded. A project house, if you will, to help me bridge the space between caregiving and, well, “after.” It also provided a comfortable arrangement for my office and library so that I could build my practice and be able to work with clients without anyone invading my private home. Perfect in so many ways.

Then the stuff of contracts and negotiations and inspections and appraisals and all the other commotion required in such things began. It’s been a rocky road. It’s still not over. But we are closer. And while the wheels of real estate deals grind, many changes have continued to occur in my life.

One of the advantages of being certified for hospice care is that you suddenly have an army of people to help you. Volunteers are limited in what they are permitted to do. They are not permitted to transfer the patient, feed them, or change them. They can, however, spend hours reading, talking, sharing music, or simply watching. Without them there is no conceivable way I could have hoped to have us packed in any reasonable length of time. I also managed to acquire a volunteer that was a professional mover. The woman was a machine. I would sort for hours and she would come in and have it all packed in no time at all. She ran stuff to Goodwill, the post office, the UPS store and helped me try to find homes for things I no longer needed. Between my volunteers and my truly amazing hospice care team, the last two months have been manageable. The dream of a home of our own truly possible.

In that process, though, it has become increasingly apparent that the love of my life is declining at an ever increasing pace. You don’t notice quite so much from day to day until you sit down to talk to the nurse about the changes since her last visit. With amazing rapidity he has developed many of the end-stage conditions of dementia and related ailments. It is now a balancing act between what must be done for one condition versus what must be done for something else. I face the stark reality of palliative care decisions each and every day.

The hardest part of my journey thus far was this past week. As I anxiously waited to find out if the seller was going to accept the value assessed by the appraiser (an answer I still don’t have at this moment) I had to take myself quite firmly by the emotions and acknowledge that he just might not be with me on my journey to the sea. The prognosis at this point is weeks, not months. With that acknowledgement I was able to turn down the stress meter on myself, my agent, and my loan officer. They have been working so hard to make this happen and every little bump caused everyone so much stress I was afraid we would start to make decisions that were not wise for anyone. So, I took a step back and accepted that I may be finishing this particular journey on my own.

I have thought about care options in these last difficult weeks. It is not that I am completely adverse to professional and caring facilities. I know that when I checked him into rehab what seems so very long ago, we were both in tears. Leaving him there was one of the hardest things I had ever done. The issue is that the tie between us is so tight that even outsiders observe it and often mention it. He has not known my name or who I am for nearly four years; and yet it is me that he reaches for, me that he holds close and wants to hug, me that he wants to touch, and me that receives his kisses. For both our sakes, I shall do my best to keep us as one to the very end.


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