Tuesday, May 7, 2013

Twilight Darkens a Sunny Day: My Family’s Experience with Dementia

twilight sky

This post has been churning in my mind for quite awhile now. As I’m writing, I’m aware that these words are a double edged sword. On the one hand, by opening up about the subject of dementia, people reading this, who have experienced the same issues, or believe that they are about to experience them, will know that they are not alone and perhaps will feel more comfortable reaching out for help. On the other hand, others, including those close to my family, may feel uncomfortable. I’ll do my best to accommodate both groups in this post.

Almost two months ago, my mother was officially diagnosed with dementia. The diagnosis was not a surprise to anyone in the family, except Mom, but it set in motion not only a realization that “this is happening and this is what has to be done now” but also explains many things that we have all noticed over the last few years. I”m referring to behavior changes mostly---things that one often attributed to old age, or perhaps one too many cocktails, or even a really bad day. But when it happens over and over again, it’s so hard to “go there” and accept that your loved one may have a bigger problem.

hands

Looking back, I think I can honestly say that there’s been something “not quite right” for about the past ten years. It’s hard to say, though, because that’s about the time that Mom lost her independence to macular degeneration. Due to the progression of that disease, she gave up her car keys and became 100% dependent on Dad and other family members for any kind of transportation. Fortunately, Mom and Dad had a very active social life, not only regularly seeing their friends and family at home but also traveling the country in their motor coach. That’s still the case but as they’ve gotten older, they’ve slowed down quite a bit, and so have their friends. Over the years, we’ve seen many changes in Mom’s behavior: from stories of events that we know never happened, to possessions that are given away because they “aren’t hers” to a general malaise that I have always attributed to losing independence. Her long term memory is great but the short term has been impacted so that she will forget the details of a recent event one minute but will be able to recount it completely an hour later. Perhaps the most alarming change is how my lovely, “Southern Lady” Mom’s personality is often altered later in the day. She morphs from her mostly happy, sunny personality to a critical, sometimes belligerent stranger. From my experience, this cycle plays out almost every day and her wrath is directed towards almost anyone in the general vicinity.

My parents have been married almost 63 years so it is no surprise that Dad has been in denial for the past ten years. Although he would never admit it, I know his heart is breaking over Mom’s condition. When he finally admitted, this past winter, that he was worried about her, we were able to quickly find a doctor in Florida, who specialized in geriatric medicine. Although Mom wanted no part of the diagnostic process, she (fortunately) agreed to go and has been mostly compliant with her treatment. As for Dad, I’ve seen him go from concerned and weeping because he doesn’t know how to help Mom to frustrated as she tells him she doesn’t want him to have anything to do with her treatment (even as she tells him that nothing is wrong with her). I remind him all the time that this is all part of dementia but it’s so hard for him. Heck, it’s hard for me too.

brain

Mom’s dementia has not been pinpointed to a specific cause. Her condition has not been diagnosed as Alzheimer's but more as “general” dementia. Apparently her condition has advanced rather slowly over the years and fortunately, she’s now on several medications designed to slow the progression of the memory loss and associated changes. Today, she’s “normal Mom” about ninety percent of the time and we are all learning together about the various resources available to patients with dementia and their families. Last week, her doctor recommended that I get in touch with our local chapter of the Alzheimer’s Association for support in understanding her condition and to develop coping mechanisms for Mom and all of our family members. The Alzheimer’s Association provides great resources for all people experiencing dementia, not just dementia associated with Alzheimer’s Disease. I will be contacting them soon and I am sure we will be taking advantage of their programs.

For now, we are in a “wait and see” mode. The focus is on spending good, quality time with Mom and making sure she is as happy and as safe as possible. As for me, this whole experience has prompted me to look at my life to make sure I am focusing on the things that are the most important. Life is short and we have to make the most of it.

sunny day