Waiting on Pins and Needles: Katie’s Story, Part Eleven
Posted: December 8, 2014 Filed under: Katie's Story | Tags: caregiving-book, emotion, Katie, lack-of-emotion, pain, waiting 2 Comments
Waiting on Pins and Needles
Each time Judene and I visit, we try to be optimistic, but too often we leave feeling discouraged, generally for one of three reasons: Will Katie be unresponsive? Will she be crying out in pain? Will she show any discernible emotion? All are difficult to understand—mysteries buried deep in Katie’s brain.
The backward steps are alarming and disheartening. We remind each other to remember: “One, two, cha-cha-cha!”
Indeed, our visit last week was really good. Katie was alert. She no longer has to wear her braces during the day. She did not cry out at all, and for the two brief moments that she did experience some pain, she said, “Ow, ow, ow,” QUIETLY. 
She also made an emotional statement (albeit unemotionally): 
“I’m going home on the 12th no matter what.”
Three steps forward for sure!
What to Do about Mama? 
Your updates on “Katie” are helpful for me to have a better insight of how things are going for both “Katie” and “Sam.” Thank you so much for doing them. I hope you will continue to post something from time to time. You have been a constant and true friend to them both.
Isn’t it possible for “Faith” to do some more things, i.e., washing “Katie’s” hair and blow-drying it in order to help “Sam” more? I don’t know what all specific duties fall under her caregiving service.
I wish “Katie” could have some more outings to get out of the house more. But I know it entails a lot in order to do that. (I have a situation with a bad back problem and can’t stand or walk long or I would offer to take her on walks.).
I keep thinking it would be nice if she could go to see some of her grandkids sporting events, especially ones outside now, but it doesn’t seem that is happening.
I’m glad the blog is helpful to you. It’s good to have some feedback. You can always contact me at cgbook1@comcast.net with questions, concerns, and suggestions. It’s encouraging to have you on “Katie’s team.”
Caregiving is very hard, and under Katie’s circumstances, the difficulties can be multiplied a hundredfold. It is only realistic to expect Katie’s care plan to succeed if “Faith” and “Sam” work together. However, Faith is doing a wonderful job at transferring Katie independently, as well as managing the vast majority of her personal care. She has enabled Sam to work, to fish, and even to visit his brother for a few days.
Katie now has a shower chair and is getting a shower once a week, in addition to bed baths on the other days. It is an immense task to transfer Katie onto the chair for her shower, back into the bed for dressing, and back into her wheelchair. It is definitely a two-person job. Do you think you would be able to volunteer to blow dry Katie’s hair on the days she has it washed? That would be a really nice way to spend quality time together.
I agree wholeheartedly that recreational outings will benefit Katie greatly. “Judene” and I discuss ideas to present to Sam. It is important to introduce new ideas gradually, and to be prepared with a lot of support. Otherwise, the immensity of the endeavor is overwhelming to Sam. That’s why we do things as “couples” because our husbands can also provide support. (Maybe you can also team up with other friends.)
Katie should be getting a portable ramp—hopefully soon. That will facilitate her going to places that are not wheelchair accessible, such as some of our homes. We’re looking forward to having them for dinner at our house, although Judene’s house would still not be accessible. In addition, we are watching for a good late afternoon movie as well as a nice day to go to dinner on an outdoor patio. If that works well, Sam may gain the confidence to venture out more.
Also, I have given Katie and Sam information about local stroke and TBI support groups. My thought is that Katie may do quite well if she feels she can once again make a contribution to helping others—a real win-win situation. Sam reminded me how difficult outings are—which I acknowledged with the reminder that meetings are only once a month.
Of course, spending time with her children and grandchildren in “normal” environments is one of the biggest advantages of Katie living at home, and not in a nursing home. Again, attending sporting events will present challenges, but I think it’s doable. Sam needs his son to take initiative and to provide help. Do you have any ideas about how to approach that?
One last suggestion. Maybe you would be able to meet the owner of the company that provides the caregiving services. She does all the care management and visits regularly. She is always happy to discuss ways to provide Katie with better care. We even talked about vacation opportunities for the disabled. But that one is definitely an idea for the future.
Barb