The Invisible Caregiver

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Caregiving is hard.

Not just the physical aspects of lifting, bathing, and dressing our loved ones, but there is an emotional component often exacerbated by exhaustion that can be overwhelming at times. I lived through those issues as I provided one-on-one care for my husband for years and eventually shifted to his care advocate once he was placed in assisted care. I thought I understood how my life had changed during our Lewy Body experience, but in the months after his passing, I discovered something else that had happened along the journey, something I wasn’t aware of at the time.

While caring for my husband, I disappeared.

Not literally of course, but during my years as a warrior, I ceased to exist. It didn’t happen overnight. From the time we realized something was wrong until he actually died took around 9 years. The first couple of years, my life didn’t change much. I was worried about him, but I was still able to pursue my writing career, attend conferences, and do book signings.  I exercised and sang in the church choir. Like any normal person, I had activities and hobbies that I enjoyed, but as the years progressed, those activities phased out in tiny increments.

It started with my writing career. I quit sending my agent manuscripts because I knew I would no longer be able to meet contractual requirements of a publishing house. Editors get quite testy if you don’t meet your deadlines, but writing while Lewy was in the house was becoming more and more difficult. “It’s okay,” I told myself. “I’ll just indie publish.” And I did…for a while. However, the stress of dealing with Lewy took my productivity from 3-4 books a year down to 1 (if I was lucky.)

I had to stop attending conferences and doing speaking engagements because my husband’s paranoia made it impossible for me to leave home. I started taking him with me until he got lost in the hotels while I was in meetings and I knew that wasn’t going to work anymore.

The writer disappeared.

The next thing sacrificed to Lewy’s hold was my physical health. I’d always exercised and kept fit, but once my husband could no longer be left alone, I couldn’t even leave him alone long enough to walk a mile in the mornings. The pounds crept up and my fitness level tanked. His needs were becoming more intense and my back paid the price for lifting and showering him, etc. Physically, I fell apart, but looking back on it, I realize I didn’t really care anymore at that point. My physical needs weren’t important compared to his.

The healthy active woman disappeared.

Next was the lack of sleep. Many caregivers reading this now are nodding in agreement. Having a LO with dementia is like having an infant. The disease changes their sleep patterns and it’s not unusual for them to get up 4 or more times per night. Remember those months of sleepless nights when your newborn awoke every few hours? Now, imagine that going on for years and you can understand some of what a caregiver goes through once their loved one can no longer function without supervision at night. The exhaustion is deep and it affects everything you do. All thoughts, feelings, decisions are tainted by an overwhelming mental numbness. At this point, many caregivers begin having concerns they too are developing dementia. They aren’t, of course, but the confusion caused by fatigue and stress can make them feel like that for a while. I lived in a perpetual state of exhaustion.

The creative woman disappeared.

It wasn’t long until most of the things I enjoyed slipped off the grid. I couldn’t leave him alone to attend church or sing in the choir, and he was no longer able to go with me. For the same reasons, I could no longer attend parties, weddings, or even have lunch with friends. There were no trips to the mall or walks around the park. No vacations, dinners out, or going to the movies. I couldn’t even read because concentrating on a book became impossible.

The adventurous, socially active woman disappeared.

Losing the ability to leave him alone enough to meet up with friends led to fewer and fewer invites and eventually, the friends drifted away. I don’t blame them for that. I constantly had to refuse the invitations so why would they continue to ask? Little by little, I lost contact with almost everyone except immediate family. Many people don’t know how to deal with someone who has dementia. They don’t know if they should call or visit, so they don’t do either. When I would get upset over the lack of outreach, I would remind myself that I’d never visited others in a caregiving situation either. I didn’t want to add to their stressful days. Little did I know how much they would have loved having someone to talk to.

Writing, reading, exercising, singing, friendships, travel…most of the things that defined me as a person, disappeared over the years we fought Lewy Body Dementia.

None of my attention or efforts were focused on my needs because the needs of my LO were more serious. Though through it all, I don’t regret one moment of that devotion. He was half of me and I loved him to the very end, but I can now see that I neglected myself more than I probably should have.

Once my husband was placed in assisted care, I started the journey to regain myself as much as possible. I texted a friend and asked if she’d like to meet for lunch. Much to my surprise, she thanked me and said, “I’d love to! I’m so glad you reached out to me. I didn’t know what to do.” That was when I realized that I couldn’t assume others knew what I was going through. How could they if I didn’t tell them? If I wanted to see someone, I needed to initiate the contact.

I began exercising (and sleeping) again. I still spent the days with him, but mornings and evenings were mine and I used them to regain as much of me as I could. Twenty months after he entered assisted care, he died at the age of 63 and just one month shy of 5 years after being diagnosed with Lewy. At the time of this post, it’s been 4 ½ years since he passed, and I’m back on my feet once more. I’ve rekindled old friendships and developed new ones. Physically, I feel better than I have in over a decade. It took a couple of years, but I decided to focus on my recovery with as much vigor as I’d tackled my husband’s caregiving.  Life is good once again.

For those still in the trenches, feeling as though you have disappeared, take some comfort in knowing your feelings are not unique nor are they permanent. Try to carve out time for yourself whenever you can and never feel guilty for doing so. Work as hard for your personal care as you do for your loved one. While their needs may occasionally be more immediate, they are not more significant than yours. There were times when I would actually look in the mirror and say, “My life is important too.” Caregivers often forget that.

Don’t let Lewy take two victims.

Blessings to all caregivers. You earn your wings every day.

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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 bounce around more than a BB in a boxcar, 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.