Finding Family in the Community of Dementia

Nothing could have surprised me more. Jim and I are making some wonderful friendships with the folks at the nursing home. Who knew? I know the names of most of the folks who live at the NH, as well as the staff who work there. We are enjoying that feeling that comes when you are getting to know someone, and finding that spending time together is a joy.

The staff are experts at interacting and comforting folks with dementia. When Marlene starts to cry because she "can't find the bus stop so I can go home", staff will gently reassure her that the bus doesn't come for another hour, and they will come to get her to make sure she doesn't miss the bus. Marlene smiles and says "thank you", and then joins the group at the table for cocoa and cookies.

When Jean cries out "Where is my son?", staff will reassure her by saying that he is at work, but will be by in an hour to visit her. Jean is satisfied with this response and asks to participate in a game of Bingo. 

The staff are showing kindness by reassuring each resident. The fact that the short term memory is so impaired allows staff to answer with what I call a "love response". I am in awe of their creative and kind ways to make certain that no one feels alone, frightened or deserted. 

When I visit Jim, I am fortunate to be a part of this fellowship. It is deeply comforting and heartening to see the love and caring that happens here.

Jim spends very little time in his room. I hear from staff and other family members that when I am not present, Jim enjoys the activities that are offered. He continues to engage in his counseling role, trying to reassure those who seem in distress. He sometimes talks to the staff as though they are his staff. This is reminiscent of when he was working in an administrative role and supervising a number of people. For example, the other day he approached a staff person and said "don't forget to talk to him about (something unintelligible). Staff person was great; she responded by saying, "don't worry; I'll make sure to do that."

I've had some folks say something along the lines of "this must be a very difficult holiday season for you." But you know, it actually is the best holiday season I have had in a few years! In holidays past, there was the stress of preparing food for ~ 20 - 25 people, as everyone gathered at our house for all the major holidays. The last few years were extremely stressful as Jim continued to decline. It was quite a balancing act trying to protect him and keep him stable, and at the same time entertain for so many people.

So instead, I've been a part of numerous holiday festivities at the NH. Baking cookies, Christmas carolers, Christmas parties, holiday sing-a-long, and visits from Santa. All with NO stress for me! And on Christmas day I will share a ham dinner with my sweetheart and the other guys at the table. There will be holiday cheer, another visit from Santa, and pleasant conversation. 

However you celebrate this holiday season, I'm sending lots of good cheer your way. I'm so grateful for each one of you. Your support and kind words have made my walk with dementia a little easer, and for that I am thankful.

I Need Him More Than He Needs Me

It was a startling revelation. Who knew?

Jim has been away from home for about 2 months now. My life is so much different. My days have a flow to them that seems comfortable. I see Jim every day; sometimes for the morning and sometimes for the afternoon. I have managed to find some joy in being outside and exercising again. I live close enough to some great outdoor spaces that are perfect for a long walk. I bundle up, head outside and enjoy all that mother nature has given to us. I've always had a passion for physical activity, but have not been able to enjoy it for the last year or so, up until now.

Every day I look forward to seeing my sweetheart. He is always glad to see me, telling me he is glad that I am "home from work". I so enjoy the time we spend together. It gives me great joy to help him with shaving, brushing his teeth, making his bed and selecting just the right clothes. I sometimes help him shower if staff have not already done so.

I've mentioned before that Jim is one of the very few who is still quite mobile. Most are in wheelchairs, some use walkers, and only a few are able to walk unaided. Jim's gait has slowed considerably, but he remains steady on his feet and enjoys "doing laps" around the unit.

There is a paucity of speech. His spontaneous speech usually occurs when he first sees me. We hug and kiss, and he tells me how much he loves me. He still has the words to tell me that I am the love of his life. We've always shared a very affectionate relationship and we thrived on physical and verbal expressions of our love for each other. How lucky I am that we are still able to share this closeness!

Otherwise, there is minimal speech. The other day I had someone take a picture of the two of us in front of the Christmas tree everyone had decorated. I was trying to get him to smile, so I said "Tell me you love me." He responded by saying "I love me."

Yesterday the daughter of one of the residents passed us in the hall and said "Hi Jim." He responded with a smile and said "Hi Jim."

His appetite is good and he really enjoys the food. There are lots of social hours and activities, all geared for folks with dementia.

Last week I needed to spend the day and the overnight with my mom following a medical procedure. It was the first time that I was not able to see Jim for at least a portion of the day. That night, as I tried to sleep, I quietly cried. I missed him terribly! I knew that he was perfectly fine. Staff love him and the other residents are fond of him as well. I knew that Mike had spent the afternoon with him, so that he would not be without company for the day. But yet in spite of that, I felt so alone and very lonely. I realized that I needed Jim, likely more than he needed me!

I'm grieving the loss of my Jim. As regular readers of my blog know, the loss has been fairly steady, especially over the last couple of years. The Jim I knew, is no longer. But! I still have a part of him, and it seems to be the very best of him. Our love for each other is something that we still can share and hold on to. What will I do when this is gone?

I'm receiving counseling on a regular basis and it is helping me immensely. For that hour, I am able to say whatever is on my mind and my heart, knowing that Dr. M. is there to help me process what I am feeling and experiencing. I cry a lot in these sessions, but I imagine that is to be expected. As the emotions lay raw I know that I'm in a safe place to work through this grief that is a part of my life.

In spite of this, there are still times of great joy in my life. In addition to the time I spend with Jim every day, I have reconnected with a few close friends. Going for a walk, going out to lunch, or just some girlfriend gab time together are all luxuries that were not possible 2 months ago.

Holidays can be a rough time for those who are grieving. I was able to spend Thanksgiving with Jim, sharing a holiday meal with him and the other residents. I look forward to doing the same on Christmas day. I did not decorate our house this year. I just couldn't find it in me to do so. Instead, I am thoroughly enjoying the Christmas tree and decorations at the nursing home. I brought up a small lit tree for Jim's room. The Rockettes Christmas video, the Christmas cookies and carols, and the festive atmosphere are all I need to enjoy this holiday season with my sweetheart.

Thanks for stopping by. I so appreciate each of you! The support I receive from the readers of this blog really means a lot to me.

**** I've added a second page to my blog, one that highlights the progression of Jim's dementia. You can access it by clicking the button at the top of the blog "Progression of Dementia".