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.