Friday, November 9, 2018

A lot has happened over the last year....

It's hard to believe it's been just over a year since Jim was transitioned to the memory care unit. When I look back at my blog posts from that time period, it brings back a flood of memories; most of them quite unsettling. The period leading up to the transition was so very difficult for both of us.

But that is history, as they say. Today Jim is settled into the memory care unit. He is content and well-cared for.

His weight is fairly stable, which means he is eating well. He doesn't have the initiative to drink beverages. I'm there at lunch time, and when handed the glass he will willingly drink. I make sure he gets plenty of fluids at lunch and then throughout the afternoon. He needs some help with cutting up food and using cutlery. The food for the most part is very good! Today it was a mini pepperoni pizza, boneless chicken wings with blue cheese dressing, green beans and pears for dessert.

Jim's mobility continues to be variable. I would say that his baseline is a very slow walk with his walker. Sometimes he has problems with stability: his legs and feet start to shake, his arms move forward with the walker, but his feet and legs just won't move. There is a wheelchair that is kept in his room as a backup for times like these.

There is a new resident on the unit and I've made a wonderful connection with his wife, who is about my age. It's wonderful to have a network of support; this is a journey that no one should have to walk alone.

My typical day with Jim goes something like this:

12:30 Arrive in time for lunch. It's the "guy's table". Interestingly, the guys are all pretty quiet. Family members at this table always joke about how we are the loud ones. It's a nice time to socialize together. The networking with other family members is such that if one of us can't be there, we know that the others will help out and/or keep an eye on things. Phone numbers have been exchanged, and quick texts to each other help to reassure and update each other on what's going on. So grateful for this!

1:15 This is a relaxing and enjoyable time for the two of us. Jim is happy to let me help him shave, brush teeth, shower if needed.  We've got a very pleasant routine so that it is a very special time for the two of us.

The rest of the afternoon is some strolling around the unit, mixed with organized afternoon activities such as balloon toss, dice games, bingo, sing-a-long, happy hour, ice cream social etc.

I also have a tablet (with internet connection provided by the nursing home) that I bring with me. Jim and I share a love of music, especially classical. Youtube has all kinds of musical performances that you can watch. The response from Jim is just amazing. I think that music must connect to a different part of the brain. He so enjoys this. And I am so gratified to see him fully engaged by the music and the performances. It something that we can share together in the privacy of his room. Such a special time!

I've written before how his speech is minimal. And sometimes it almost seems like he is in a daze. When I first greet him, I never know how he will respond. He might look at me, but as I speak to him it is almost as if he is looking through me and doesn't hear me or know that I am there. I know it's  part of the disease, but still it is so sad.

Some  days he'll smile when he sees me; his eyes light up and I can tell he is happy to see me, even if the words are not spoken.

And every once in a while he will speak several words, usually as a visceral reaction. The other day I walked into his room and sat on his bed next to him. When he first saw me he said "Oh Carole......I love you.....with all my heart". I will remember this forever. I will never forget his voice or the way he looked at me when he said these precious words.

One mystery for me is that no one from my family has ever been to visit Jim since he was placed. Why is that? I think I know.....I try to put myself in their shoes, and I imagine there are a lot of different reasons: fear, feeling uncomfortable, what do you say to someone with dementia, etc. But it really hurts me and leaves me feeling sad.

A lot has changed over the last year. I'm grateful to have Jim content and settled in memory care, but at the same time I grieve each loss that I see. Sometimes I think about what our life would be like if this had never happened to Jim. What would our retirement life look like?

But being the realist that I am, I quickly refocus on the present and what our new reality is. And I accept it. And I remain grateful for the love that we share and the kindness of others during this journey.

And that includes gratitude for all my very kind readers. Thank you for your support on this journey; it means so much to me.


I'm having problems commenting on my own blog! I'm still working on finding the solution. I can comment, but it will be as "Anonymous", and then I'll sign my name at the end of my comment. If anyone knows of a fix for this, I'd appreciate the help.