Friday, September 14, 2018

Dementia's Bittersweet Transition

These images are incredibly powerful. I look at them, and my heart fills with emotion. Corrina was kind enough to take both of these photos. I now have them displayed in a lovely frame on my piano. The photos elicit warm, loving memories of our life together. I will cherish them forever.

It's been a while since I have posted, and I actually have quite a bit to share with my kind readers. I've been waiting until things settled into place a bit.

Since I last wrote, Jim has fallen three times. No serious injuries, however he did sustain a laceration on the back of his head with his second fall, and scrapes on his forehead/nose on his third fall. His gait is  slow, shuffling and a bit unsteady. When he becomes fatigued, he seems unable to lift his feet properly, resulting in falls/near falls from his forefoot catching. The doctor has evaluated him to rule out any medical reasons for falls/instability.

As part of the evaluation, first his Depakote (used for agitation) and then his Geodon (used for hallucinations/delusions/agitation) were discontinued (not at the same time; about 3 weeks apart). I have to admit that I was a bit nervous about this. Interestingly, stopping the 2 medications did not help his gait/steadiness. So the loss of his ability to ambulate without assistance is thought to be a progression of the dementia.

So what happened with Jim's moods when these two meds were discontinued? Interestingly, agitation did not return. He does not appear to be hallucinating. If he is hallucinating, it does not seem to bother or upset him. His moods have been quite mellow.

A year ago when Jim was first prescribed Geodon he was still living at home. His hallucinations and delusions were frightening to him, causing severe agitation and threatening behavior. The Geodon helped quite a bit at the time.

A year ago I believe that Jim knew that something was terribly wrong and it scared him. Hence the agitation and aggression. Fast forward to today and it appears that Jim has very little awareness of his situation.

With dementia, developmentally the person is going in reverse. I see the rapid decline, sometimes even week to week, and it is just heartbreaking. With the tragic reality of his progression, I work hard at appreciating the fact that he is more content now than he has been in a very long time.

He no longer has what is called "resistance to caregiving". For example if he needs to be changed due to incontinence, he is no longer combative or resists. He passively accepts the help. It really seems as if  he no longer has an awareness that "something is wrong".

So you can understand if I say that this is a bittersweet transition to observe. There is the tragedy of the progression of the dementia, but the joy of knowing that he no longer seems to be aware of or suffer from fear of the terrible changes that are happening to him.

He has been receiving Physical Therapy for optimizing his strength to minimize his risk of falling. It's a challenge to make sure that he uses the walker. He does not resist using it at all, but he does not remember that he is supposed to use the walker. If someone puts it in front of him when he stands up, he is more than happy to use it.

I've updated his progression of dementia on the second page of my blog. With the recent changes that I've noted, it appears he is transitioning into stage 7c, as described in Fisher's Stages of Dementia.

Jim needs some help at meal time. Technically he can still feed himself. But the beverages poured for him will be untouched unless you pick it up and hand it to him. Use of utensils is difficult for him; may use a knife for the soup or try to "drink" his cup of pudding. I make sure I'm there for one of the meals every day; usually lunch. This way I can make the dining experience is easier for him and make sure he gets plenty of fluids. The rest of the afternoon is sprinkled with more beverages and some snacks, so he is well fed and well hydrated. At meal time, staff are busy feeding people who have no ability at all to feed themselves. They are understandably very busy, doing the very best they can.

The other change that I've noticed over the last few weeks is the "muting" of his response to me. Before I could count on the fact that as soon as he saw me, he'd have a big smile, his eyes would light up, and he would walk over to give me a hug and a kiss. Now, his response is more muted and not as predictable.

Even though there is sadness in the losses that I see, I still find joy each day in other ways when we spend our time together. We still enjoy taking a shower "together". He seems to truly enjoy the warmth of the shower. He stands, using the walker to support him and I take care of the rest. He loves it and so do I! Such a warm, loving and personal experience that we can share.

He is no longer able to brush his teeth, but he is happy to let me do this for him. I've finessed my skills, being careful to angle the brush just right so that it is a comfortable experience for him. He seems to enjoy letting me shave his face, as I joke about having to get out the hedge trimmer to get all the whiskers.

He still reaches to hold my hand, or to put his hand on my leg. He sits close to me, seemingly enjoying my closeness.

So with all the sorrow, there is still happiness! I choose to focus more on what Jim and I still have, as opposed to dwelling on the losses. I'm getting wonderful support from Dr. M., who is able to help me process some of the more difficult emotions. She knows me so well and is able to help me gain a different perspective/understanding with difficult situations. I'm so grateful to have her in my life.

On a closing bittersweet note, my dear friend Corrina is moving on to a very exciting turning point in her life. Corrina first welcomed Jim and I when we first arrived at the care home. I'll never forget her kindness. Her sweet personality and her love and affection for the residents shines through. As an activities leader, she provided wonderful, fun and meaningful activities for the residents. She is getting married this weekend and moving on to a job that will be a better fit for her new life with her husband-to-be. So very, very happy for her, but will miss her terribly!

Thanks for stopping by. As always, it does my heart good to be able to write about what Jim and I are experiencing.


Kay said...

I am so impressed with the loving care you are able to provide for Jim. He is lucky to have you and I'm glad you can have these moments of loving closeness despite the slow fading that is taking place.

Carole said...

Aloha Kay. You and your husband too, know the joy of a being a caregiver for someone you love very much. While your mom doesn't have dementia, and her needs are quite different, I think we can both relate to the strong connection we have with our loved one, and the power of that relationship that draws us closer in their time of need.

I so enjoy your blog! Thanks for stopping by Kay.

DJan said...

I'm still here, Carole, reading and commiserating with you as you recount your experiences with Jim. This is such an awful disease, but thankfully you have found a way to be with your Jim as much as possible. And thank you for taking the time to explain the progression so well. Sending you my most sincere appreciation.

Jabberwalky08 said...

Hi Carole, I just found the "Progression of Dementia" tab, that has the summary of what's been happening with Jim since you started writing. What a helpful, if painful, list! Appreciate very much the time and care you are taking with this blog. Carers supporting one another make/s the journey bearable.

Arkansas Patti said...

I am always amazed at how you are able to still find the joys and not be consumed morning the losses. Jim is so lucky to have you in his life but what he gave you the years before must make what you are going through a strong foundation. It is also a comfort to know that he has found a bit of peace which has to make all this easier on you.
Take care of yourself and eachother.

Carole said...

I'm grateful that Jim and I had the foundation of a loving marriage that has allowed our bond, our connection to see us through this difficult time in our lives.

The blog is a great catharsis for me. And the support I feel from you and all my readers has helped me along this journey. And if it helps someone else to understand dementia, well that is all the better. Thanks for your sweet comment DJan.

Carole said...

Hi Jabberwalky. Yes! The support from other caregivers is invaluable. You and I certainly share that bond, and I'll always be grateful for that.

I started keeping track of the progression as a method of helping me to better understand the disease process. It's been interesting to compare my notes to Fisher's Stages. They're pretty on track with how Fisher describes the symptoms at each stage. The part that is strikingly different for Jim is that he appears to be a "fast progresser," barreling through each stage in about a third of the time frame that one would expect.

Thanks for your comment Jabberwalky!

Carole said...

Thanks Patti. I agree; I think that if a couple has had a troubled marriage, it would be difficult to be the caregiver for someone with dementia.

Thee reality is that Jim gives me so much love every time I see him. I feel his love, even if he is not able to say the words. Our emotional connections are still so strong. And when I see his eyes light up, or see that beautiful smile, it rushes over me in a way that is indescribable.

As the dementia progresses, I'll continue to look for that connection. It will change, but the love will still be there.

Javanut021 said...

Hello, Once again a thought provoking piece to read. I love the photographs. They are just wonderful—warm, peaceful, loving. I’m glad that you have an excellent Dr. to help you. Also glad that you are able to find joy in spending time together. All the best, D

Carole said...

Thanks for your comment. Still creating memories every day, and I'm so grateful for that opportunity.

Joared said...

Ah, this bittersweet experience continues, but glad you can find what can provide some solace. The photos are, indeed, very meaningful. Glad you have your Dr. on this journey with you.

Carole said...

It's a journey I never expected to take. But so glad that there is still a loving connection that helps us through this next stage of life.

Tehachap said...

As I read your posts, I feel sadness because you and Jim are having to travel this very difficult path, yet the core of love between you two helps to negate some of the sadness. Sad, but happy for Jim that he's transitioned to one of peaceful unawareness. It had to be so hard for him as he saw his mind and body changing. You're so very right -- if your marriage hadn't been one of strong friendship and love, things would be quite different. Hugs to you ... your readers are right there with you, sharing your sadness and your joy. Blessings... Carol

Mage said...

I'm very glad to have found you again.

Sad to read that he is fading, but so pleased to read that he still recognizes you. Hugs too, Mage

Carole said...

Hi Mage. Glad you found me too! I'm so grateful that I'm able to find joy in what we have each day. Thanks for you hugs; and sending them right back to you!

Carole said...

It was hard when he was still at home and so angry/upset so much of the time. I remember feeling frustrated that I couldn't make things more peaceful for him. I also mistakenly thought that no one could do a better job than I in providing care for him. Boy was I wrong! Thanks for your kind words Carol, and hugs to you too:-)

troutbirder said...

It's so hard. So very hard. I'm sleeping better though because after two 911 calls needing help to find my "wandering spouse" and a week in the lock up ward at Mayo St. Marys after an assault and almost "elopement event we're back home a freshly installed electronic monitor and alarm system. The only one to complain about it so far is Lily our GSD....:)

Carole said...

Hi Ray. So good to hear from you. I'm so sorry to hear about all you and your wife are going through. It's so difficult. I remember when Jim was still at home, and the fear I felt, worrying about him leaving the house. He often was determined to "go home".

Please know that I think about you and the challenges that you are facing. I hope you are able to find the best way forward for both of you.

Dr Sock said...

What a relief for Jim to have passed into the stage of no longer being aware that something is wrong, and fearful and upset about it. But how heartbreaking for you to see the incremental losses week by week. For the first time I have noticed the second page of the blog where you document your observations of changes over time. The record, I’m sure, will be very helpful for other caregivers walking this path. And for you it is a way to hold onto and make sense of this life experience that you and Jim are sharing. Thanks for writing, Carole.


Anonymous said...

Hi Jude. You are so right. The documenting of our experience really does help me to make sense of things. I'm one of those people who has an incessant need to know and understand how/why things are happening.

I plan to write another post soon. I find it hard sometimes to sit down and write. As an accomplished writer yourself, you know how emotionally draining it can be sometimes when putting into words the raw feelings and emotions. But at the same time it is liberating, if that makes sense. It is another way for me to process what Jim and I are experiencing.

Thanks so much for your comment Jude.

P.S. Blogger is giving me a difficult time in commenting on my own blog!!!

Tabor said...

Visited here from Mage's site as I began testing my access to Blogs. I am so sorry for this and it truly brought back memories of my mother-in-law as she transitioned to dementia and finally into a home. She did not have a loving partner as both my husband and I worked full time, we did visit several times a week, but I am sure it was not a comfortable as your husband it getting. I do regret that.

Anonymous said...

Hi Tabor. Thanks for stopping by. I'm sorry to hear about your mother-in-law. For families such as your's, where the primary caretakers are still both working, there are no easy answers.


P.S. By the way, I like your blog!

LC said...

Found you through Troutbirder's blog. Like your Jim, I am blessed with a loving spouse who helps me be and do as much as possible, although my brain impairment is from a hemorrhagic stroke eight years ago that affected motor and sensory on my left side. I am sure your loving, determined, matter-of-fact spirit, much like my husband's, contributes not only to your loved one but also to those medical and care personnel who come into contact with you both. Thank for writing and providing an example of courageous tenderness and caring in painful circumstances.

Carole said...

Thanks for your comment LC. So glad that you and your husband have such a good attitude. It goes a very long way in difficult situations. To have a loving spouse is a gift of immeasurable value.