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. 


Tom Sightings said...

My mother-in-law is in a memory unit, and it's sad to see, but she's 100 years old and so it's easier to accept. Please just know that I'm following your posts and appreciate the poignancy and the . . . well, and the care and love that come thru so strikingly.

Anonymous said...

Thanks for the support Tom. I appreciate it. I enjoy reading your blog, with your timely commentary and information on retirement issues.

Wow, 100! Most folks on Jim's unit are much older than he is. He is the youngest at 69, but I would guess that most folks are in their 80's or older


DJan said...

I love your writing of this difficult time in your lives, Carole, and still continue to be amazed at how quickly I find myself in your shoes as I read along. Although it has not happened to me, so many people are going through something similar that I can't help but wonder how I would cope. And I cried when you described Jim's greeting that day, so poignant and beautiful. Thank you for continuing to share your experiences.

Anonymous said...

Your comment means a lot to me DJan. I feel so fortunate to still be able to create lasting, loving memories. The support I receive along the way from you and other kind readers, as well as my close network of friends helps me to stay focused on the positive as Jim and I travel this journey together.


Jabberwalky08 said...

Oh Carole! Thanks so much for this entry.
We are on the verge of this tranistion, as you know, and I read every word to learn how I can be the best partner for a person who needs to live in a memory care/assisted living situation.
Appreciate your sharing the journey with us all!

Arkansas Patti said...

Thank you so much for the update. Often wonder how you two are doing. Like Djan, his greeting that day brought a tear to my eye. I am so happy he was able to voice what I am sure he feels but can't always articulate. Sounds like a lovely place and I am glad you are having such good interactions with the other spouses. That has to be a comfort and a relief.

Anonymous said...

The transition to residential care is such a difficult time. We know in our hearts what is right, but at the same time we can get bogged down in self-doubts, questioning ourselves about every aspect. The support of others is so important as we help our spouse transition. It can bolster our resolve to move forward with what we know is the right thing to do.

Thinking of you often Jabberwalky, and sending peaceful thoughts and best wishes as you travel down this new pathway on this very difficult journey.


Anonymous said...

Thanks Patti. I'm so grateful for this care home. It's not perfect of course, and right now there are some staffing changes that will take some time to adjust to. But I know that I'm the consistent one in Jim's life. Staff may come and go, but I'll be there to be his advocate and to care for him. I've always believed that when staff see how much you care about your loved one, it makes them see the person in a more tender, loving light.


Anonymous said...

Every article you write is so touching. I know you went through a very rough patch to be where you and though it is much smoother with this awful disease it will never get easier. Reading what you are going through I felt blessed my mom's descent was relatively quick, about 2 years. There were no phases, it just went to heck rapidly. But oh the love you two have for each other, a love for the ages. I hope it will be enough to sustain you and Jim on your journey. God be with you. -N

Anonymous said...

Thanks for your kind words N. I'm so grateful that Jim and I had a good marriage going into this. It would be so hard if the relationship was not a good one to start.

It's interesting to hear others' experiences with dementia. So many different presentations, and such a variability in rate of decline. But no matter how it rears its ugly head, dementia is a devastating disease. I just hope that a cure/treatment is found for the generations who follow us.


Tehachap said...

Thanks for this post -- As I read, I see things you experience with Jim and realize I've had the same reactions/situations with my husband. It's hard to say, but I find myself numb at times, realizing that this is our new life. I pray that his diagnosis is something that can be corrected with medication. Meanwhile, hang in there and know you are in many hearts and minds. Carol

Tehachap said...

p.s. Re: your anonymous identity when replying to commenters -- the only thing I can think of is that you're not logged in under your own ID. Try logging out and logging back in again.

Anonymous said...

Thanks for both of your comments Carol. I'll try the logging out and logging back in to see if that works.

I think back to earlier times with Jim when I knew something was wrong, but did not have the full understanding of what lay ahead for both of us. You're right, it is numbing at times. Sometimes I get so focused on the day to day happenings, making sure that our days go ok, without allowing myself to think to deeply about how all of this really feels. It's heartbreaking. But I can't "live" feeling heartbroken all the time. So, as they say, one foot in front of the other, and all of that.

Thinking of you often Carol as you and your hubby figure out exactly what is happening. Sending hugs your way!


troutbirder said...

We're approaching a similar transition now as Barb long long slow decline accelerated rapidly this summer with 911 call as wandering kicked in and several trip to St. Marys'emergency (Mayo Clinic) that culminated in an assault on a nurse and what they called an "elopement" not of the Romeo and Juliet type. Two week in the psychiatric confinement facility followed. She is home now with a security system installed a new and more effective pill regimen. Our motto remains "we're a team and we keep on trukin... At least for a while longer...:)

Anonymous said...

Hi Ray. Thanks for sharing the latest update on how things are going with Barb. I'm so sorry to hear about the last few months. It must be taking quite a toll on you. Barb is so lucky to have you in her corner as her advocate. Top priority of course is to keep both of you safe. Sending you peaceful wishes and continued strength on this very difficult journey.


aliceinmemoryland said...

Having followed you and Jim as his condition changed, I find this report oddly reassuring. Not that the situation is one anyone would wish for but Jim is being well cared for, and you have found a way to live with what your life is in this moment. Your strength and generosity of spirit is amazing and and inspiration.

Anonymous said...

A year ago I could not have imagined our current situation. Dementia is so unpredictable! It makes it near impossible to utilize are typical planning strategies for life happenings. Instead we adjust as best we can with every change that comes our way.

Thanks for your comment. I appreciate your blog. The connection with others in similar circumstances makes the journey a little easier.


Dr Sock said...

Carole, it is good to hear that you have a daily routine with Jim that allows the best quality time together that is possible at this stage of his dementia. I understand your feelings of hurt that family members do not take the initiative to visit Jim. When my children were aged 2-8, my first husband passed away suddenly. Some friends just disappeared, and some acquaintances actively avoided my children and me. My best guess as to why was that they could not deal with their own feelings of fear and anxiety at the thought of our loss. On the other hand, some other friends and family members really stepped forward and helped out in ways that I will never forget, and for which I will be forever grateful.

Maybe one way to address it would be to directly ask a family member to accompany you to visit Jim on a specific day. Tell them that you will only stay for a couple of minutes and that you will visit him together. That might reduce their fear enough that they would be willing to come visit again in the future.


dkzody said...

Somehow I lost track of your posts and so am coming to this's a new year and I hope you are able to continue your visits with Jim.

The music part of the brain seems to stay for a long time...I am watching a lady at church slip into dementia but she can sit down at a piano and play anything you ask of her. She enjoys playing and seems to relish the requests.

Anonymous said...

Thanks so much for your suggestion. I was pleasantly surprised recently when one of my sisters asked to come for a visit. It went so well!

I agree with your analysis of why it is so difficult for some people. It helps to understand, and thereby not personalize the lack of response.


Anonymous said...

Yes, it’s about finding ways to connect, isn’t it. As the dementia progresses , I’ll need to go a little deeper to find him.