Friday, May 18, 2018

Contentment Found in the World of Dementia




This photo was taken by Corrina, one of the activity leaders at the care home. Below the photo she included a beautiful narrative that described how his hands provided care for others throughout his career, lovingly held hands with his sweetheart, provided comfort and companionship to his beloved black lab, and enjoyed taking the wheel of his favorite sports car.

It's hard for me to explain how powerful this is. I cried when I saw the photo and read the narrative. Corrina had captured the essence of my sweetheart. I will cherish this forever.

It's been quite a while since I posted and a lot has happened. Hard to know where to begin....

When I think back to all of the changes over the last 7 months, it makes my head spin. Last October was the crisis the resulted in Jim being hospitalized and then transitioned to a care home. Following that, I quickly realized that I needed to move. The home we built for retirement was no longer where I belonged. Every where I looked, it was a sad reminder of what we had lost. And I don't in any way mean material possessions, I simply mean the shared retired life that we had so looked forward to together.

The size of our home, the maintenance, upkeep, and expense were just too much for me. Fortunately our house sold relatively quickly. The hardest part was going through everything and deciding what to keep, sell, donate or throw out. It was a challenge because I knew that no one could really help me with that process; it was something that needed to be decided upon by me alone.

In the middle of the transition of moving, I managed to get sick. I fought it as best as I could, but I ended up a couple of days flat in bed, just too sick to move. I think the stress of it all was catching up to me.

The condo I purchased is just the right size for me alone. About 1000 square feet. I'm starting to feel settled. The last of the boxes were unpacked this past week. The community is a friendly and caring one. At the same time, it never feels intrusive. There are weekly social hours, occasional pot luck meals in the community room, and occasional spontaneous events/activities.

Jim continues to do well in the care home. Technically of course, it is a nursing home. But the love and care that I see there day after day inspires me to refer to it as a care home. It's not perfect of course, but overall the staff are simply amazing. So kind and caring, and I know that he is in good hands when I am not there.

I learned the other day that during the late evening shift, when many people are already in bed, Jim is doing his laps around the unit. When he tires, he simply goes into the first bedroom that he sees. He becomes agitated when he finds that someone is in bed. He likely is thinking that the person is in his bed, and has given a few folks quite a fright with his threatening behavior.

Depakote has been added to help with the agitation that he is experiencing at night. In addition, I'm reassured that staff are attempting to be proactive and doing their best to prevent and redirect.

Jim's language is fairly limited. Usually just a word or two that is intelligible. Once in a while he may string together a few words that are sensical, and that is always a pleasant surprise.

Yesterday a family member told me privately that Jim walked into her mother's room. He walked up to the resident (she is in a wheelchair), patted her shoulder, and said "you'll be OK". That's my sweetheart! The family member was so touched by his kindness. And I was so grateful that she shared that with me!

I haven't felt this settled in a long time. I think back to a little over a year ago when I was so stressed, I remember worrying that I was likely doing physical harm to my body. To live each day with high stress, fear and anxiety.....I'm not quite sure how I managed. Except to say that somehow in the middle of a crisis in our lives, we simply put one foot in front of the other. Because what else can we do? So we just do it.

But that is all behind me now. I'm happy and content because Jim is doing just fine. Certainly his disease is progressing, but he is in a safe haven. A place where he believes is home! And I still get to see him every day. He still knows me, is happy to see me, puts his arms around me and still says "I love you Carole".

It doesn't get much better than that.

Thank you dear readers for stopping by. And thanks for your patience for my lengthy absence. This journey has been a difficult one, but each one of you have helped to make the journey a little bit easier. And for that I am grateful.






27 comments:

Valerie said...

It is good to hear from you again, Carole, and to know that things are going well for you. I think you are brave to move house. I thought about it for a while but decided that I should retain the property in memory of the man who provided it. Take care of yourself, my friend.

Carole said...

Hi Valerie! So good to hear from you too! You too, know the heartache of losing your beloved spouse. For me, the financial piece weighed heavily into my decision to move.

I'm reminded by my therapist that Jim would be so proud of me. And I know that to be true. Such a kind and gentle soul, he would only want the best for me.

While going through everything to pack up for the move, going through all of our belongings and photos was especially difficult. I miss him terribly and wish that he could be here by my side. But I remind myself that he is still with me in spirit, the real Jim, that is. Still in my heart as we travel this dementia journey together.

Thanks for stopping by Valerie.

DJan said...

I have been inspired and moved by your stories about Jim, Carole. And I am so glad to hear you are doing just fine (other than that illness, which we all get from time to time). I hope you will continue to provide the occasional post so I can know how it all plays out from here. Thanks again for this lovely uplifting post. Made my day. :-)

Carole said...

Hi DJan! I will continue to post with updates, as Jim and I continue this journey with dementia. I'm grateful for the peace that I have found in my life, and Jim in his. Thanks for your comment DJan :-)

Jabberwalky08 said...

Carole, it's so very helpful to hear of a good "care home" experience. Popular culture has a very negative, knee-jerk view, which is not helpful when you find yourself having to consider placement for your spouse. Appreciate your blog SO much!

Carole said...

Hi Jabberwalky! You are so right. There is a powerful negative stereotype of nursing homes. I remember only too well my own strong feelings on the matter, convinced that I would continue to care for Jim at home and would never place him. How could anyone do a better job than me? Boy, I had no idea. At the time I could not foresee the near impossible circumstances that made me realize how wrong I was.

There is one nursing home in the area that is on the verge of closing. The health department has found numerous incidents involving serious neglect, including some that lead to an early demise of a resident.

This all points to the importance of doing your homework ahead of time, scoping out the different options and getting a sense for what might be needed down the road. I did not do this, and it is only through a serendipitous connection that I was able to place him in this very safe care home.

Thanks for your comment and support Jabberwalky!

Roberta Warshaw said...

Glad you posted. I have been wondering how things were going. Thanks for the update.

Carole said...

Hi Roberta. I feel like my life is starting to take on a "new normal". It seems strange to feel like I actually have time to engage in typical life activities. I'm looking forward to reading again for pleasure. Actually downloaded a book to my Kindle. It's been a long time since I've been able to enjoy that type of leisure reading.

Thanks for stopping by!

Arkansas Patti said...

I am so happy for this update and to hear that both you and Jim are doing well considering the circumstances. It is wonderful that you have found such a great home for him among caring souls. That he reaches out to comfort others says so much about the man.
Please do keep us up to date and take good care of your self.

Carole said...

Hi Patti. I'm so grateful for how things fell into place. I think back to the wise advice from Dr. S. and am so glad I had the strength to follow through. It was pretty scary not knowing how things would unfold. I now have peace knowing that Jim is safe, well cared for and content. I'm thankful that I can appreciate all that we have and not be embittered by life's little surprise.

Thanks for your comment Patti!

troutbirder said...

Am so glad to read how well you are doing and Jim is safe and somewhat content. I hope to do as well someday...:)

Carole said...

Hi Ray. I think of you and wonder how you and your wife are doing. While everyone's journey with dementia is unique, we share the bond of being caregivers to our loved ones, just trying to make our way as best as we can.

Thanks for stopping by Ray, and do take care.

Tehachap said...

So glad to see you in my inbox. I, like others who follow you, was becoming concerned. I knew you'd surface when you had time, and here you are! Taking the photo of Jim's hands at rest was such a lovely thing to do for you. And Jim's assuring the other resident that she would be o.k. is touching. His true personality is still in there, and we see it come out at times. How great is that? Continue to take care -- and enjoy your reading. It's one of my favorite pastimes.

Carole said...

Hi Carol. So good to hear from you. The photo of his hands touches my heart. When I look at this photo, I see the essence of who he is. A reminder of his tenderness, his love and his compassionate heart for others. And I'm grateful I can appreciate and focus on what we still have, and not dwell on the loss.

Thanks for your comment Carol.

Mage said...

Yes, that is a most touching photograph. We have a few of our friend Duck up, and we are both moved by his enthusiasm waving at us from a camel. :)
So glad the new place is a good fit. Especially glad he remembers your name.

Carole said...

Hi Mage. I was just thinking today about how thankful I am that I am able to be grateful for what we have. I can see where some folks might dissolve into a bitterness, but really that would not serve me or Jim well.

I'm reading a book called Loving Kindness: The Revolutionary Art of Happiness by Karen Salzburg. Recommended to me by Dr. M., it's helping me a lot. I may write more about it in an upcoming post.

Thanks for your comment Mage.

gigi-hawaii said...

Good to know that you are well and settled and that Jim is in good hands.

Carole said...

Thanks Gigi! It feels good to get settled in my new home sweet home. And so grateful I have the essence of my sweetheart still with me.

Joared said...

The hands photo is, indeed, very striking. I've been catching up on some of your life accounts since the first of the year as I hadn't been blogging. I'm so pleased for you that you've been able to resettle into a comfortable location that won't require so much care from you. Pleased to hear also that Jim continues to be well-placed to receive the care he needs. I gather there's still your mother for whom you provide some attention and I hope you continue to benefit from other family helping. You do need some time for yourself and I do wish for you that you're able to have some of that time.

Carole said...

Hi JoAnn. So good to hear from you. (You were the very first commenter on my very first blog post!)

My siblings are helping me with the care for my mother. I have a disabled brother who also needs some help and support, as he is developing some chronic illness with his advancing years.

But I feel so at peace here in my home. I know that Jim would want this for me. I am finding some time for myself, or for "self-care" as my therapist would say. So important for emotional survival!

Hope all is well in your world. Thanks for stopping by.

Kay said...

Oh Carole... You are so strong and capable. I totally admire how you’ve coped with everything. I don’t know how I would manage. You have truly given Jim comfort and managed to take care of yourself as best as you could. You are amazing!

Carole said...

Hi Kay. Some days it is just putting one foot in front of the other. But I have to say that the support of friends, Dr. M., and family have really helped me through some difficult times.

I look into his eyes and know that he is still there. I'm so grateful that I still have him, that he knows me, and that he is still able to tenderly let me know (in his own way) that he still loves me.

Thanks for stopping by Kay.

Dr Sock said...

Carole, I am glad to hear that you have recovered from being ill, and that you are starting to feel settled in your new home. Both you and Jim are now in a better place emotionally now than several months ago, and that is good to hear.

Through your writing, you have opened my eyes to the struggles with dementia that are all around us. In one of the community groups that I belong to, one of the members is a lovely woman who has been diagnosed with Alzheimer’s. Upon her diagnosis, her husband left her, and now she has no family nearby to provide support to her. In another community group, the president of the group has just announced that she has to step down from her role as her husband has just been diagnosed with Alzheimer’s and she needs to stay home with him.

The disease does not receive the attention it deserves. We need more research into prevention and treatment, and more social supports in place for patients, families and caregivers. Your blog provides such great insight into the experience. Thank-you for sharing your experience.

Jude

Joared said...

Oh, that’s interesting about my original comment to you. Lots surely has happened in your life. Much to absorb you with family, but you seem to be managing pretty well I’m pleased to read. Yes, I’m doing fine, thank you.

Carole said...

Hi Jude. So good to hear from you. The face of Alzheimer's is so different for each person. Recently I've been reading about the prodomal stage of dementia, where imaging captures the changes in the brain, but the person remains asymptomatic. Research like this is invaluable; early diagnosis and intervention may help slow the progression (perhaps prevent progression?) and also gives the person and the family time to prepare for the future.

That is heartbreaking about the husband who left his wife once she was diagnosed. It's beyond comprehension to me.

The cost factor in caring for someone with dementia is the other area that our country needs to address. Available options for those who need residential care often drain all the assets that have been saved for retirement.

Thanks for stopping by Jude. I always appreciate your insight!

Jocelyn is Canadian Needle Nana said...

Hi Carole your journey has been amazing and thanks for sharing about it. I’m happy you have that big and traumatic move behind you. These are events and possibilities I will share at some point. Stay strong and carry on.

Carole said...

Hi Jocelyn! Just took a peek at your blog; just lovely!

I'm relieved the big move is behind me. I easily connected with my new home. It really does feel like home sweet home. So grateful for that.

Thanks for your comment and for stopping by.