LBDA

Dad's LBD Journey

Monika
Friday, September 8, 2017
My dad was diagnosed with Lewy Body Dementia in 2009, but his LBD story started many years before that.  There was nothing definite, just little forgetful things from time to time.  My mom, brothers, and I summed it up to work stress as he has recently started a new position at work in a new town and at a new plant.  It was a huge change for all of us, so the forgetful moments here and there were overlooked.  It wasn’t until a bit later that my parents decided that there was something more going on.  Things that had been so easy for him in the past seemed to be a huge task now.  He was always so great with computers and figuring out problems, that was his job after all, but now he wasn’t picking up new things like before.  It got to the point where it was suggested that perhaps it was time for him to retire.  We took him to several doctors, but none of them could pinpoint what exactly was wrong. 
 
Dad had started to notice some physical limitations by that time as well.  Was it dementia? Was it the early stages of Parkinson’s?  Was it nothing more than the stress of having to relocate up to New York while his family was still in Pennsylvania?  None of the tests, scans, blood work gave a clue as to what was going on.  He had a slew of doctors that gave him everything from anti-depressants to medications for Parkinson’s for his various symptoms.  Some seemed to make things better for a little while, while others just exacerbated the problem.  It was a continuing cycle of different doctors trying different remedies, but no one could give us an answer or really help us.  
 
After a few years of this, we finally decided to go to a neurologist in Philadelphia.  We were there for all of 10 minutes before our doctor said “it looks like Lewy body dementia with Parkinsonism”.  He explained a little about the disease and tweaked some of his medications.  Leaving the doctor’s office we were relieved to finally know what we were facing.  It was a grim diagnosis, but at least we could research and create a plan of attack.

And attack we did.  We knew that one of the best things to do was to keep Dad moving and thinking as much as possible.  As the months and years went by, the physical aspects of the disease started progressing faster than the mental.  When it got too much to walk on his own, we got him a walker.  When he couldn’t get out of the chair on his own, we got him a lift chair.  When he couldn’t safely walk up and down the stairs, we got a stair lift.  He always loved reading and loved it when we got him a Kindle so that he could continue reading his favorite mystery novels in a font big enough to read from across the room.

We were also lucky in respect to his hallucinations.  We heard story after story of how loved ones with LBD would become physically violent and have horrific visual and auditory hallucinations.  Dad’s were much more mild.  He’d tell us that there was water dripping from the ceiling or that there were elves in the backyard.  We would joke with him and tell him that the elves should come on in and help with the housework.  Later, he said there would be a little blonde girl trying to get him into trouble by pulling the TV off the wall, etc.  He was never violent and only occasionally grumpy.

We knew that eventually Dad wasn’t going to be able to do the most basic things without a lot of assistance, so my parents and I sat down to decide what Dad did and didn’t want when it got to that point.  My mom was adamant that Dad was going to remain at home until the end.  She knew that no matter how wonderful a nursing home was, it was still no match to the care that she felt she could give him.  He signed his DNR and made sure we knew that he didn’t want any extraordinary measures taken to prolong his life when it got to that point.

A few more years went by and Mom and I realized that Dad was at the point where we were going to need more help.  Mom was still working and Dad couldn’t be left alone for long periods of time.  We got an aide who came a few times a week to sit with Dad and make sure he kept moving and eating.  We also signed him up for a senior day care which was great.  Dad got to keep mentally and physically active while interacting with others.  Eventually Dad got to a point where he could no longer go due to his physical and mental limitations, but by that time, Mom had retired and was able to devote herself fulltime to his care.

By 2015, Dad was having more and more trouble moving around and would have to spend his day in his hospital bed because he just couldn’t get his legs to move.  He had also almost completely stopped talking by this time as well.  He would mutter a few things and would answer a simple question if we were patient enough and repeated it numerous times.  In January of 2016, we realized that we needed more help than just mom could provide, so we called in hospice. It was a difficult choice because when someone hears the word “hospice” you automatically think, that’s it, he’s done.  This was not the case and for anyone out there struggling with LBD and the choice to bring in hospice, do it.  They were a lifesaver.  Anything and everything that we needed, they provided.  From supplies to medication, all we had to do was ask.  They also gave us helpful tricks and advice to make his and our lives easier. We started having an aide come in 3 times a week, a nurse once a week, and also spiritual and mental support for him and mom.  We had a great team that really cared about Dad and Mom made sure he had the best care possible.

He continued on like this until the summer of 2017.  Until then, he had been eating a healthy 2-3 meals a day and seemed to be in good spirits.  He then slowly stopped eating as much as was down to just maybe one meal a day.  He was having trouble swallowing and we didn’t want to force anything because we didn’t want him to aspirate any food or drinks to give him pneumonia.  Then one day, he didn’t eat anything.  We thought that maybe he was just having a bad day, but that evening, he spiked a fever which we treated and got under control, but that was the beginning of the end.  For 2 weeks, he would only drink a little juice a day and then finally, he stopped drinking.  We knew this was the end of this long hard battle, and while this was difficult to watch, we knew this isn’t the way that he would have wanted to live.  We were also lucky that everyone in the family was able to say goodbye, many people aren’t afforded that luxury.  On September 4th, 2017, he passed away surrounded by his family.