I finally gave in to the doctor's request to allow hospice to provide assistance. Today, a hospice nurse, a hospice social worker, and a hospice Chaplin all came to the house. They also arranged to replace the equipment that our insurance has been providing, such as the feeding tube machine. They also had a patient lift delivered, although it looks pretty complicated to use. Kim has gone down hill so fast this past week, to the point that I can barely move her. She is totally out of it and provides no assistance and is complete dead weight. Fortunately she only weighs about 120 pounds now and I've been exercising daily for the past year, knowing it would come to this. I used to have zero arm muscle, but now I look more like Popeye (well, I may be exaggerating on that one - haha).
I'm sure this was the right thing to do, as I've been panicking frequently. Even though Kim currently does not have an active UTI (and we've have had plenty of those), nor anything going on in her lungs, all of her vitals keep going up and down. Temp will be normal and then an hour later it will be 103.5. Heart rate over 100 and then in the 60's. Fortunately her oxygen levels have not dipped below 92. And her blood pressure has only been slightly elevated. We saw her neurologist last week and she told us this was a sign that her brain can no longer regulate her body functions and is starting to shut down. That really hit me hard, so I've been preparing family and friends for what's to come. My daughter and I have gone dress shopping so we can bury Kim in that perfect dress. Unfortunately that's been a real challenge. Seems like all the stores only carry party dress with lots of glitter, are low cut and sleeveless. Not at all appropriate to be buried in (or at least that's my opinion). And most of the dresses in Kim's wardrobe are not appropriate either, as they were ones she would wear on our many cruises. We took 18 cruises over the past 20 years. How I will miss going on cruises with her. We have taken 5 since her diagnosis in 2010, which included a 2-week Hawaii cruise and a 2-week Panama Canal cruise.
We fought the good fight and unfortunately it looks like PSP is going to win this one. We only recently attempted to qualify for the C2N clinical trial in Dallas, TX, but once we arrived, they determined she was too far in to the disease to qualify. Kim and I both wanted to help find a cure to this horrific disease. Partly because we would never want our children or grandchildren to face this disease (they're still not 100% sure it's not hereditary), but also because we have become so close with others dealing with this disease through the support group that we lead. And I have gained an even more passion after hooking up with you wonderful people from all over the world. How it breaks my heart to read some of your posts each day. Many of you have taught me things and I'm only hoping that some of my posts and replies have been of help to you as well. I've also been on the Program and Education Committee for CurePSP.org for the past couple of years. Even after my beloved passes, I plan to continue the fight and serve however I can. My faith in Jesus Christ is what is getting me through these days. I'm constantly reminding myself: I can do all things through Christ who strengthens me.
Love and Hugs to each of you, and wishing you peace and joy during this holiday season.