The Essence of Jim Still Manages to Shine Through the Cloud of Dementia

When I look back a year ago, it is shocking to me how much Jim has declined over this relatively short period of time. A year ago Jim was still driving. We were in a transition period where I knew that before too long, he would no longer be safe to drive.  A year ago I was able to leave the house for a period of time leaving Jim alone. Mechanical tools and equipment were becoming difficult for him to use. 

He had some problems with word finding, but was able to communicate fairly clearly, for the most part. I was just starting to feel the frustration and worry about being caregiver to my elderly mom and still be available for Jim. My brother and his wife have taken over the caregiving responsibilities for my mom, and for that I am forever grateful. She is in good hands. Unfortunately her cancer has returned. At 88 it is not clear what options there are for her. She has an upcoming appointment where she will learn more about the latest diagnostic testing results and recommendations. 

Since my last post I found and attended a support group for caregivers of folks with dementia. It was a little disappointing. There were only 3 in attendance (including the facilitator) and quite a bit of the conversation was off topic between the facilitator and the other person present. At one point the facilitator asked me what I considered my biggest challenge. My practical mind immediately thought of finances, but as I sat there I became overwhelmed with emotion as I said "I miss my husband. I feel like I am losing a bit more of him with every passing day." 

I don't allow myself to dwell too much on the heartbreaking reality of our situation. If I did, I'd be a basket case. But every once in a while, it hits me hard. As far as the support group goes, I'll keep looking. Most groups meet just monthly. The one I attended is every other Thursday, which I feel is just what I need right now. So I'll keep going to this one until I find one that is a better fit for me. 

Dr. S. referred me to a psychologist to help me through this difficult period in my life. At first I wasn't certain I needed this level of support, but now I know that I do. 

Jim is receiving wonderful care at the NH. I couldn't have hand-picked better staff myself. Just as an example, Jim and I were walking down one of the long hallways. Off in the distance I could hear Tiffany's soothing voice, saying such sweet things and obviously giving a lot of TLC to one of the residents. As I walked by the room, it occurred to me that how you behave when no one is looking is really the measure of character. Tiffany was giving her love and her time to this frail, bedridden elderly woman. It was a real "feel good" moment. 

I go every day, sometimes for the morning and sometimes for the afternoon. I look forward to it every day, as I get to see my sweetheart and be reassured that he is safe. I help him shave, brush his teeth and make any clothing changes that are needed. It gives me joy to be able to help him with these things. Staff are grateful as it frees them up to help those with greater physical needs. 

He's always happy to see me; we hug each other tight, kiss, and hold hands just like we always have. We've always been very affectionate with each other, and none of that has changed! I am so grateful for that. He has no sense of where he is; he doesn't ask me where I've been. He may think he is at home; one day he asked me if I just got home from work. I went with it and said yes. 

The food is delicious! They have round dining tables that seat 6 (there's always room for me to squeeze in too). Over lunch the other day one of Jim's table mates, Don, said something to Jim that was totally unintelligible. Jim smiled and chuckled and said something back to Don that also was unintelligible. Then both of them were laughing! They were having a grand old time! 

What I have found fascinating is Jim's response to others who seem confused or in distress. The essence of who Jim is responds in ways that can only be described as therapeutic. I've seen him try to help someone find their room, he consoles those who are distressed by patting their shoulder and telling them that "it will be OK". The recreation therapist told me she saw him counsel someone who was worried that her daughter hadn't been in to see her. That's my sweetheart! 

There have been some challenges, but I knew there would be. He is not always taking his medications. I remember at home the stunts I would have to pull to make sure he was taking his pills. Lots of sweet talk, ice cream, re-approaching, joking around...I had a lot of tricks up my sleeve. Staff are in a learning curve for how best to approach Jim. They have been very receptive to my suggestions. 

The last four nights he has not slept well, getting anywhere from 2 - 4 hours of sleep. Some of this is likely from the missed medications. So hopefully this will correct itself soon, as staff fine tune there approach with Jim.

He's had episodes of agitation, actually hitting staff. Fortunately it was not hard, and no one was hurt. I'm certain that this too is related to the missed medications. 

Physical therapy ended two days ago. This means that Medicare is no longer picking up the bill. So now private pay begins. I've had two productive meetings with Susan, my attorney and her two medicaid expert associates. I now am in a position where I understand legally what my options are and ways to preserve some of our assets. None of it is easy, or without some significant consequences. Tomorrow I meet with Geoff, the best financial advisor ever, who will help me to sort out the options and figure out what makes the most sense "financially and emotionally" (Geoff's words). 

Another wonderful opportunity for me to share what is on my mind and in my heart. Thank you to each one of you for stopping by. The kindness and support I receive from all my kind readers means the world to me, and I am forever grateful.