Staying Strong

Today’s post is from guest blogger, Sadie Strong:

Stay Strong

Have you ever had one of those days where everything is going great and then all of a sudden everything just comes crashing down on top of you, ruining any hope you had for a good day? Well, that’s what happened to me on June 28, 2015, except the bad was here to stay. I had just returned from middle school open house, one of the most feared events in a tweenager’s life. Other than that, I had been having a pretty decent day. A little minor crisis here and there, but nothing I couldn’t handle. When we got back from the middle school, my mom called me and my brother into the living room. I had no idea what was happening. What she told me that day made my entire world collapse.

Lewy Body Dementia 3 Stage System

 

A little over a decade ago, a group of caregivers for spouses with Lewy Body Dementia put together a list of symptoms and attempted to break the progression of LBD into 7 stages. (That list can be found here) For years, it has stood as the only available staging document for caregivers to use as the medical profession has not attempted to tackle such a task due to the complexity of the illness. While the caregivers’ list has been very helpful for giving families an idea of the types of symptoms to expect and when to expect them, it was often useless to those whose loved ones did not follow the progression of symptoms in the same order. Many caregivers complained that their loved ones would have symptoms from stage one and stage four at the same time, for example, or would bounce back and forth between stages.

 

In 2016, Very Well.com released an article simplifying the progression into three basic stages (That article can be found here) They compiled this based on input from several reputable sources which can be seen at the bottom of the article. For me, this system made much more sense and fitted my husband (and every other person I’ve known with LBD) much better.

Surviving the Grief

This article is mostly for those who’ve lost a loved one and are having difficulty moving forward. At the time of this post, it’s been 3 months since my husband died from Lewy Body Dementia and overall, I’m doing very well. I’ve been asked many times how I’m holding up as well as I am and as usual, those sorts of questions make me stop and think. I’m not totally sure why I smile more than cry, but I thought I’d share my survival plan with those struggling with the loss of a loved one. And, yes, I developed a plan after he passed away.

My mental health is too important to leave something this difficult to chance.

The End Of The Journey

After almost 5 years of battling Lewy Body Dementia, my husband passed away in November of 2016. He was only 63 and had been extremely fit and active before his illness. Throughout our Lewy Journey, I often felt he was nearing the end as he seemed to decline rapidly at times, and I couldn’t imagine him living for much longer. From the time I began having those thoughts until he actually passed was between 2-3 years.

Now that we’ve finished our journey and I’ve interacted with countless other caregivers, I can see a basic decline pattern that most seem to follow unless they die suddenly from pneumonia, heart failure, sepsis or some other illness. I’m sharing what I learned with hopes that it’ll give you a heads up with the types of things that will likely happen in the final months of your loved one’s journey.

A Different Kind Of Grief

I’m no stranger to grief. In my 59 years, I’ve buried all of my grandparents, both of my sisters, both of my in-laws, my father, and now my husband. The loss of the sister closest to me in age was particularly hard as she was my best friend and breast cancer took her way too soon. I watched her die over the course of two years and losing her changed my life. For years after her death, I marked every event in time as to whether it happened before or after she died. Her death shifted my world.

Losing my father was difficult too, but he was 79 years-old and for some reason, that made it more bearable.

The Stages of Caregiving

There have been countless articles written on the stages of decline for those with dementia, but very little given to the stages caregivers go through while dealing with a disease like LBD. Recently, one of my support groups worked together to organize a description of the stages a typical caregiver goes through during the years of caregiving duties. It was difficult to separate emotions from actual stages, but the list below seemed to fit most of the participants. It was agreed that (as with the stages of grief) it’s possible to bounce back and forth between some of the stages and to experience two stages simultaneously, particularly the last two.

Stage One: Confusion

The caregiver knows something is wrong, but doesn’t have a diagnosis yet.

“My thoughts are not my actions.”

Has anyone ever said something to you that resonated like a bell? You know, something that on any other day you wouldn’t even have remembered it, but because of your situation, the sentence or advice shouted at you like a message from Heaven? You hear trumpets sounding and a chorus singing, and your heart says, “Yes! Yes! Those words were intended for me!”

Well, I had one of those moments not long ago, but in order for this post to make sense, I need to fill in a little back-story.

Game Changers

One of the more frustrating aspects of dealing with Lewy Body Dementia is the wild changes in ability often experienced by those who have the disease. Their abilities to function can go up and down more frequently than Oprah Winfrey’s weight, throwing the caregiver into a constant state of confusion as to how they should prepare for what’s coming next. While I would never presume to predict the future for anyone dealing with this disease (or any other disease, for that matter) there are certain changes along the way that most will eventually deal with, unless their LO (loved one) dies suddenly. I refer to these milestones as “Game-changers.” Game-changers are tipping points in our LOs functioning that require us to alter our lifestyle in some manner. These are not day-to-day changes in function, but specific milestones that alter life dramatically.
These milestones will be different according to your individual situation, but seeing the changes experienced by others can provide food for thought for those starting this journey.
In the hopes of helping other caregivers understand the pivotal points that lie ahead for most, I’ve put together the following list of life altering changes we’ve faced in the last 8 years. (Feel free to share)

Game-changer #1– the diagnosis 2009/2011

Caregiver survey

Ever since my husband was diagnosed with Lewy Body Dementia in 2011, I’ve searched for information pertaining to life expectancy and speed of progression. My reasons were multifaceted. First, I’m one of those persons who needs to have a plan. I can’t blindly go from day to day, hoping things will work out for the best. Some might call me a control freak and maybe I am, but I prefer to think of myself as a pragmatist. I’m not wealthy and I know care can cost a great deal. I needed to know what to expect and how quickly the disease could progress so I could make financial decisions for our future.

7 compelling reasons to use a care facility

I can’t put Dad in assisted care or a nursing home. I promised Mom I’d take care of him.
Sound familiar? It’s a caregiver dilemma that is heard around the world, a promise made from the heart that is now tearing out the heart of the caregiver who made it. But should a caregiver be bound to a promise made when she had no idea what Lewy had hiding up his sleeve?

Let’s look at this another way… Image a six-year old girl, promising the little boy next door that someday she would marry him. Maybe you vowed such a thing years ago and now you shake your head at your naiveté. The little girl had no idea how her life would change in the years to come. She could not comprehend the challenges, and twist and turns that are inevitable as life moves forward. Should she now feel guilty for marrying a different man? Is she a failure because she broke her promise?

The same can be said for being a caregiver for an illness like Lewy Body Dementia. Until you’ve gone night after night without sleep, cleaned up urine and feces from the carpet, the toilet, and your LO (Loved one), and had your LO call you every name in the book (and then some), you can’t really comprehend how difficult this challenge can become. Even hearing stories from other caregivers can’t prepare you for what you may face. For many caregivers, the stress and difficulties reach a critical point where something has to change in order for the caregiver and other family members to survive. The decision isn’t an easy one and often carries a lot of guilt.

The following is a list of 7 reasons shared by caregivers from an on-line support group for why they decided it was time to place their loved one in a care facility.