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.

I had always had this image of the perfect family; two parents, a few kids, and maybe a dog. As humans,

we don’t really expect anything to prevent us from having that “perfect family” until something actually does prevent it.

I would always read stories and hear about people who lost someone in their family, and think nothing of it. That is what made this news so hard for me to process. I could not imagine living without a dad. It just seemed impossible.

Before all this happened, my parents had been going to appointments almost every day, which meant they were always leaving, and that made me a little mad. My dad had stopped working due to his having trouble concentrating and remembering things. I was overly excited since I never got to see my dad much; he left early in the morning and got home late at night. I thought everything was fine with my life, I thought I had the best family I could have, and I thought that I would never in my life have to go through something that made me so sad and mad all the time. But I was wrong.

When I sat down on the couch, I looked at my parents. I could see the discomfort in my mother’s eyes and it made me nervous.

The room felt stuffy and warm and I didn’t like it.

I tried to calm myself down and breathe. Then my mom said my dad was sick. He had Lewy Body Dementia, and he would never be returning to work, or driving ever again. Most importantly, he wouldn’t be my dad anymore.

I could not explain how I felt that day. Mad, sad, confused, hurt, and hoping for the best. My mom told me that typically, older people are diagnosed with this disease, but my dad was an odd case. He was 54 at the time and extremely healthy. This is what absolutely baffled me. My dad was one of the healthiest people I had ever known. So why the hell did he get this damn disease? I just didn’t understand that. After a few weeks of this wonderful charade, my mom told us we needed to see a therapist. Therapists get on my nerves. All they tell you is that everything you feel is normal and ask you if you can put words to your tears. I would really rather not try to talk while crying. I am not skilled in the art of multitasking. What bothered me the most was that through the years of my dad being sick, everyone felt bad for me and treated me like a baby. I wished they could understand that I don’t want their pity-party.

I just wanted to be treated like a normal kid, but I wasn’t a normal kid.

So like it or not, I got to be the baby.

Looking back, I can’t remember a time when my dad was actually my dad. All I remember is him being different. He wasn’t necessarily good at everyday things such as ordering food through a drive through. Aside from that, my dad was the most amazing person I could have ever had in my life. He was funny, unbelievably smart, and had some pretty awesome dance moves. My dad was in IT at the Catawba Valley Medical Center as the Technology Support Coordinator and for a genius, had great people skills. He was also into real estate and had a separate business for buying, flipping, and selling houses. My dad was extremely accomplished in life and I strive to be just like him.

It was hard to know what the future brought throughout my dad’s time fighting this disease. One week he slept until three in the afternoon and was able to walk around without falling. The next, he slept until ten in the morning and swayed like a flower blowing in the wind. My dad declined rapidly and I wasn’t going to be surprised if he was in a nursing home soon. I eventually got to the point where I didn’t look forward to going home after school. My aunt was staying with my dad while we were not home since he could not take care of himself. I thought that if he was in a nursing home, he would get the proper care he needs and maybe going home would not be so hard. But that thought made me sad since I would not get to see him much.

Throughout my time with my dad being sick, I learned that you should always be grateful for what you have and never take things for granted. You never really miss things until they are gone. I remember there was one week when my mom told us that she had spoken to our doctor about my dad and he told us we did not have much time left with him. When we started having my aunt stay with him, everything was going fine until that next weekend. He couldn’t walk on his own and we did not know what to do. We thought about getting him a wheelchair but the problem with that is that the man was six feet four inches and would not exactly fit or rather be comfortable in a wheelchair. However, we had no choice, we ended up getting him a wheelchair that was pretty big and it worked out fine. It was Spring Break and my grandparents were visiting from Vermont. There was a woman from hospice who came to our house multiple times in those last few weeks of my dad’s life. It took three of us to get my dad up the stairs for bed. The hospice woman suggested we get a hospital bed for him so he could sleep downstairs. I absolutely hated this. Him sleeping downstairs was a struggle for both my mom and dad. It broke my heart into a thousand pieces when my mom told me that my dad was upset sleeping downstairs. He was away from all of us.

After he moved downstairs, those next few weeks were unbearable. On Sunday, April 23, some of my dad’s close friends came to see him and say goodbye. He was asleep most of the time but everyone enjoyed themselves (to an extent). The next day was the first day back to school after Spring Break. My grandparents left, and I unwillingly went back to school. Usually on Mondays, my friend’s mom took me home. But on this day, she took me to her house. My brother was there to, which was odd, but I did not suspect anything. When my mom came to pick us up, she had a brief, secretive conversation with my friend’s mom. When we got into the car, my mom filled us in on what was happening.

“So you know how we had talked about putting dad in Hospice House in a while?” she said. “Yes,” I said unsure of what was happening. “Well, he is there now,” said my mom.

I felt like I was going to throw up. I cried and cried and cried until I ran out of tears. All I wanted to do was go give my dad a hug and make it last forever. When we got home, a close friend of ours was there and gave me a squeeze of a hug. I put my school things down and got right back into the car. I wanted to go see my dad. It was raining on the way to hospice. I felt like there was a reason for the rain. The rain matched my cloudy, dreary mood. I was shaking and I when I stood up, I felt like I was going to fall onto the floor. When we arrived, I felt sick. I hated the smell of the building. It smelled like the doctor’s office and a nursing home. It was cold and stark but everyone was friendly. We walked past many rooms with patients and they all looked like they were in their eighties or nineties. My dad was in his fifties. When we got to his room, it was surrounded by my closest friends and family. I walked into the room and started crying. I looked at my dad, laying in the bed, eyes closed, and mouth open. His breathing sounded terrible. There was a noise coming from his throat that did not sound real. It sounded like it was coming from a speaker in the room. I could not bear to see him like this. I had to leave. I did not know what to do.

I left the room and was showered with hugs. Someone gave me a hot chocolate and I went to go sit outside. I needed a minute to breathe and calm down. My mom told me that dad had anywhere from days to minutes. We stayed there for a few hours and then decided to leave. My grandparents came back and my mom stayed overnight at hospice. The next day, I slept in and didn’t go to school. We went back to hospice and my dad was doing much better. It was easier to see him. I gave him a giant hug and whispered in his ear, “I love you infinity times infinity, infinity times.” I used to say that to him every night before bed. I told him not to be sorry and that I was sorry that this happened to him. That night, we took our dog to see him. They were very close and it made me happy to see Odog with him. She got in the bed and licked his hand. I think she knew what was happening. Each day was harder than the next. I never knew what was going to happen. On Friday, April 28, my mom came home early from hospice. I knew something was wrong. She called my brother into the kitchen and said,

“He’s gone.”

All I wanted was a daddy hug. He always gave the best hugs. I am not sure how long I cried. Even though he was gone, he was no longer suffering, and that made me happy. Best of all, he was with his parents in Heaven. We bought some cheap plates from Goodwill and threw them as hard as we could off the deck onto the patio with the letters LBD on it. That helped me get out some of my anger. The next week was his funeral. I now hate funerals. The whole time I was wishing that I could be home, smashing plates onto the ground.

Even though this was the hardest thing I have ever been through in my life, I think it turned me into a better person. I learned so many valuable lessons, such as to never take things for granted. I will miss my dad forever, but I know he is in a better place now.  I also know that even though he is gone, he will still be a part of me.

Not only was my dad a true warrior, but so is my mom. She is the strongest woman I will ever know and I look up to her for that reason. This experience has changed me for the better, and I hope to inspire others just like me to never give up and stay strong.

*A special thanks today to Sadie Strong for sharing her story to help others.

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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.

 

According to this article there are basically three stages: (I expanded their explanation by adding examples of symptoms and including information from other sources, including interactions with hundreds of caregivers)

Early stage: Behavioral problems

At the beginning of the illness, behavioral issues are usually the most problematic. The individual will typically experience depression, hallucinations, delusions, REM sleep disorder, paranoia, and confusion. They may also become aggressive, angry, and undergo personality changes. While not all will experience all of these symptoms, most will experience at least some of them. (For example, my husband never became aggressive) It is during this phase the diagnosis is usually made. The individual may either have no movement issues at this time, or very minor ones like mild stiffness or tremor.

 

Middle Stage: Movement problems

During the Middle Stage of the illness, the behavioral issues tend to level off and movement issues arise.  This is not to say the behavioral issues stop, but they don’t seem to progress as rapidly as they did in the beginning and in some cases, actually improve. It is during this stage the muscular or Parkinson’s-like symptoms develop. The individual may lose control of bladder/bowels. They begin stumbling/falling, and may develop swallowing difficulties. The Lewy Lean might become evident. By the end of this stage, they will likely need help with most if not all of their ADLs (activities of daily living) and will often need placement in a care facility or the caregiver will need to hire home health care aides.

 

Late/final Stage: increasing weakness

At this point, the individual becomes weaker. They will likely need a wheelchair for most transports, will begin dropping water glasses etc. They reach the point where they can no longer feed themselves. The weakness continues until they eventually succumb to the disease. Often, they develop an infection, pneumonia, or some other illness that will end their life, however some simply shut down. (more on that can be found here) It is rare for this stage to last more than a year, however some have been known to be bedridden for two years or so. *Remember all of these progressions are gradual! They don’t simply wake up one day unable to feed themselves ever again. They might need help one day, but not the next, however eventually they need help each time.

 

Some things to consider:

• It is impossible to diagnose Lewy Body Dementia without an autopsy. Those whose loved ones are not following this progression may possibly have a different type of dementia or more than one type of dementia. It has been estimated that 40-50% of those with dementia have more than one kind. (More on that can be found here)
• The main difference between individuals with LBD isn’t the progression of symptoms, but the time each individual stays in each stage.  Some may be in Early Stage for 3 years or more while others might enter the Middle Stage after only a few months. My husband was in the Early Stage for about 2 years, Middle Stage for about 2 years and the Final Stage for a little under one year.
• There is no clear cut step between stages. The symptoms morph slowly from one phase into the next. For instance, your loved one might start having swallowing issues, then suddenly improve for a few months before those issues return.  Lewy is tricky that way.
• The average life expectancy for Lewy Body Dementia is 5-7 years AFTER diagnosis. Many caregivers can recall symptoms for years before diagnosis, but the statistics for survival do not take that into account. Please remember this is an average. Some will not live as long and others will live longer. (A study on that from a caregiver support group can be found here)
• If a person was diagnosed with Parkinson’s disease several years before Lewy Body Dementia was added (meaning they would have had movement issues first) it’s important to note that most neurologists would diagnose them with Parkinson’s Disease Dementia instead of Lewy Body Dementia. The general rule of thumb is that PDD is diagnosed if the individual has had Parkinson’s for more than 2 years before the dementia symptoms arose, however, the two dementias are extremely similar and treated the same. (more can be found on that here)

Final thought:

I personally found this method easier to understand than the more complicated systems that list dozens of symptoms neatly categorized into several stages. Individuals are too different for that sort of method to work consistently. I’ve also noticed when working with different neurologists, they tend to use the terms early, middle, and late when referring to their patients instead of a complex order of stages. Not once during the time my husband was seeking treatment from either the Cleveland Clinic or our local neurologist did any of the doctors involved say he was in stage two or stage four, etc. They simply said, early/beginning, middle or late. (Some doctors will used the FAST scale, but that is usually for Alzheimer’s)

I think it’s important for caregivers to look at all documents pertaining to possible symptoms and time frames so they have enough information to make important decisions regarding care and finances. However, attempting to pigeonhole your loved one into a rigid staging system might prove to be more frustrating than productive.

 

 

*Feel free to share this post if you feel it might help others gain a better understanding of the caregiving journey. If you’d like to follow this blog (it’s free) click on the follow button on the right side of this page and you’ll receive an email whenever there’s a new post. You can unfollow any time you wish.

*If you’d like to see past posts, go to the top of this page and click the “home” button and scroll down, or go to the “categories” on the right side of the page. There are also buttons at the top for helpful links, and other information.

*I’m also a published fiction author. If you want to check out my books, you can find out more about them here.

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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.

First, I’m a very goal oriented person. It’s natural for me to set goals and work toward them in all aspects of my life. Having goals keeps me focused on the future instead of the past. I often think of the saying, “Quit looking in the review mirror. You’re not going that way.”

So how did I apply that philosophy to my grief?
My husband died on November 13, 2016. Just a few weeks before Thanksgiving. It’s never easy losing someone you love, but having it hit just before the holidays can be brutal. Add to that the beginning of winter (seasonal depression, anyone?) and there’s the potential for a total collapse. Knowing that, I set a major goal for myself with smaller goals to help me achieve that Big One. My large goal was pretty simple…

Survival

I was determined to survive the loss of my life partner. I have children, grandchildren and an 82 year-old mother who love and need me. Giving up is not an option. Surviving this would require focusing on two different aspects of my life: my physical health and my emotional health.

The first thing I did was allow myself time to rest and heal. The last two months of his life were exhausting both mentally and physically for our entire family. I gave myself until the first of the New Year (about 6 weeks) to rest.  I had to take care of the legal issues that arise when your spouse dies, but I gave myself a pass for all other things. There would be no cleaning out closets or cabinets. My body needed a break. In order to help with the stress, I began walking in the mornings, but I didn’t push it. I walked 3-4 times a week and usually only a mile. The bulk of the time, I rested, watched TV, read, and planned a future for the new me.

To cope with the holidays, I altered the way I usually celebrated. I spent Thanksgiving out of town with my daughter and her family in their new home. On Christmas Eve, my mother spent the night in my apartment. The next morning, we passed gifts and I fixed Christmas dinner for just the two of us. We finished the day watching movies together. These were all different for me as far as celebrating the holidays. As a result, they kept me from focusing on the fact my husband wasn’t there. Altering the way we celebrated helped quite a bit.

During my 6 weeks of rest, I made a list of things I enjoyed or was interested in trying. I asked myself, “If I had no one to worry about but me, what would I do with my time?” Because for the first time in my life, I wasn’t taking care of children, or a husband. I really did have the time to pursue my interests. This was new for me and took a while for me to truly grasp that concept.

My Joy List included:
Traveling, hiking, fishing, writing, reading, star gazing, playing guitar again, learning the violin, learning to draw, and photography. This list would be the focus of my emotional survival. Your list will most likely be entirely different. It might include things like getting a pet, putting in a new garden, or rebuilding a classic car. What’s on the list isn’t important as long as they are things that bring you happiness.

When January came around, I kicked my new goals into gear.

Physically, I wanted to increase my fitness walking to between 3 and 4 miles per morning by March. Being winter, this required walking inside our facility (I live in a retirement community), but I wanted to be able to hike by summer and this 60 year-old body needed some fine tuning. That also meant eating healthier. It’s easy to let those things slide when you’re in a caregiving situation. It was time to take care of me for a change.

As for my emotional well-being, that’s where my Joy List came in. Many of the items on that list revolved around traveling and camping. I had traveled my entire life, but we had to sell our RV when my husband became ill. I missed traveling a great deal, and during the last couple of years of his life, I decided if I survived his illness, I was going to camp again. So, I bought a used RV after he passed away (more can be seen on that here) and then joined a travel group for single women who like to camp but don’t want to go alone. It’s called Sisters on the Fly, and there are over 6,000 members! Each state has a chapter and there are events planned throughout the year, sorted by region. Early in January, I reserved spots for three different camping events. There are several events scheduled each weekend across the country and one of the toughest things I encountered was narrowing my choices down to a reasonable number. I wanted to attend all of them! The first one I chose was in Gettysburg in May and I’m extremely excited to join in the fun.

The key to that sentence is: “I’m extremely excited.”

That doesn’t mean I’m not grieving for my husband. I still have nights when I feel as though my heart has been ripped from my chest. I still break down into tears periodically, but when those moments happen, I force myself to think about my plans and the future. I’ll confess, sometimes it’s tougher than others. But the main point is that I have made my well-being a priority now. For eight years, my number one goal was to keep my husband as content and comfortable as I possibly could. It’s my turn now and I intend to tackle my new goals with as much vigor as I did my husband’s care.

So what are some tips I can share for how I’m surviving the loss of my husband after almost 40 years of marriage and 8 years of caregiving?

Get physical. Walk, swim, bike…do whatever you can to move, not only for your physical well-being, but to reduce stress. Exercise releases endorphins and endorphins make you feel better (and they’re free.) It’s also important to get doctor’s checkups you might have missed while tending to your caregiving duties.
Make a list of things you enjoy then do them. Now is your chance to focus on what YOU want and not on what everyone else wants from you. Whether that means travel or simply getting a pet to keep you company, it’s time to spoil yourself. At least once a day, look in the mirror and say, “My life is important too.”
Get out and interact with people. Sitting home will only make the depression worse. Join a group of some sort-church, volunteer somewhere, go to the Y, support group,…even if it’s an internet group, just INTERACT with other people.
Allow yourself to grieve, but don’t dwell in that dark place. Grief will begin feeding on itself if you’re not careful. Make yourself laugh at least once a day. I have a Pinterest board with things that make me laugh. (Youtube videos of babies laughing will do it every time) It’s hard to be sad when you’re laughing.
Accept that being happy does not mean that you didn’t love your spouse. It means you’re not going to allow their death to erase all the joy you’d shared with them through the years. Keep the joy in your life, look for it, embrace it, and actively seek it. There is no better way to honor their memory than to smile when you think of them.

Hugs to you all. There is life after caregiving, but you have to reach out for it. It will not come knocking on your door.

*Feel free to share this post. If you’d like to follow this blog (it’s free) click on the follow button on the right side of this page and you’ll receive an email whenever there’s a new post. You can unfollow any time you wish.
*If you’d like to see past posts, go to the top of this page and click the “home” button and scroll down, or go to the “categories” on the right side of the page.

*I’m also a published fiction author. If you want to check out my books, you can find out more about them here.

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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.