When The Battle is Lost

It's been several months since I last posted to this blog. The last time was in October of 2007, the one-year point in a very expensive treatment that has produced very promising results for most of the people who have been on it... IVIg (Intravenous Immunoglobulin).

A followup exam in December revealed that our treatment had most likely made significant improvements in my wife's functional skills such as dressing, buttoning, zipping, clasping, etc. On the functional scale improvement was back to a 4 from a previous 6a back in March. This improvement had been noted in October as well and had remained stable.

Immediate comprehension of speech also improved. While driving in the car and playing a CD of jokes, my wife got many of them and laughed, sometimes guffawed and knee-slapped. The jokes ranged from innuendos, play-on-words, puns, and... well you get my drift... and she "got them" and laughed at the appropriate times. Talk about encouraging! That behavior continues to this day. Some things are actually retained for a few moments, but then fall away.

The final IVIg treatment in October had been traumatic for her. For reasons beyond our understanding, nobody could seem to find a vein to administer the plasma. After going through five nurses and about two-dozen attempts to get a needle into her vein, none had succeeded. My wife was crying, the nurses were crying, and I finally said to the sixth volunteer that I was calling it quits because of the trauma and the fact that once a vein is found it's still 5 hours to completion. To this day, my wife recalls the pain of that event and tears-up at the sight of a needle.

By February of this year, she had lost some continuity of thought in the shower and could no longer shower herself if it involved shampoo, so I took over shampooing her in the shower, rinsing, conditioning and rinsing. That worked well for several weeks, but another phenomenon was taking place... recognition of who I am failed at times, usually in low-light, but most notably once in the shower where she suddenly panicked thinking I shouldn't be there. She was all lathered up with shampoo and the resulting struggle scared me. I was afraid one of us was going to fall through the glass. If it was me, she would have been incapable of calling 911 for help.

Though Functional capabilities had improved during the IVIg treatments, cognitive ability had continued to decline and had fallen from a 3.5 the previous March to a 1.0 in February.

By March, I began searching for assisted living facilities that had memory care areas... still thinking we were several months away from actually needing one, but aware that waiting lists can be quite long and finding one that is not only available but has high quality help, a reputation for reliable care and affordable, can be a daunting task.

Finally, after finding what I now believe is the best choice, I placed her into an ALF that provides her with constant activities, a regimen, three meals a day, two snack-times, and some very compassionate and respectful residential aids.

Putting her in there was about the most traumatic thing I have ever had to do. I grieved and sobbed... uncontrollably for a couple of days. I called every shift, learned the names of every med-aid and residential-aid that had anything to do with her and asked every conceivable question about how she was doing.

Miraculously she began to help other people, pushing those in wheelchairs to their rooms or to the dining hall, kneeling and smiling at them and introducing herself to them. She began asking to help the staff with things and, where she could, they let her help.

Most of the time now, after nearly a month in the facility, she is happy. She anticipates my visits and runs to me when I come in the door to give me a big hug and kiss. I'm able to take her out for outings to get something to eat, get her hair done and even see a movie.

The week before I took her to the facility, she had wanted to see the new Indiana Jones movie so I took her to the theater after a doctor's appointment. That did not go so well, she cried through most of the movie. I surmised that it was because she was not following it at all.

A month later, we were by the same theater getting an ice-cream cone when she said she wanted to see the new Indiana Jones movie. I mentioned that she had already seen it, but she did not recall having seen it and was excited about seeing it now... so guess what... we went to see the new Indiana Jones movie. This time she seemed to follow and enjoy the whole story, applauding and laughing at the end of the wedding scene.

She is now happy to return to the facility, feels she has many friends there and knows that she is being treated compassionately. Her favorite words now are "compassion" and "compassionate".

Though emotions still run high for me, I now feel that I have done the right thing on her behalf and have a sense of peace in knowing that I selected a place for her that I can be proud and pleased to have found.

I have continued to look for clinical trials she might be able to participate in. Just this week I went through the pre-screening process for her on the new phase 3 trial code-named AAB-001. I was shocked that she was disqualified because she can no longer read and write nor articulate a sentence of more than a few words.

The longest sentence I have heard her say an many many weeks is "I miss you so much".
She also says "Still in Love" and "Forever and Ever, Amen".