My Mom
This is our experience with Lewy Body Dementia, I hope that my weakness may give you strength.
Chapter One
The Message center
Have you ever had that uneasy feeling that something bad is going to happen? Or a feeling that there is something you need to do but you don’t know what it is? Many of us just excuse those thoughts as part of our imagination and ignore that little message center as if were not there.
Something kept tugging at my inner core that there was supposed to do something, almost an urgent feeling that kept me unsettled. I told my Husband so many times that something was going to happen, a strong feeling kept me unsettled, there was something to do but I did not know what. We must have a little message center in our brain. Is it God talking to us? Is this just a gut feeling? I feel that Gut feeling is God talking and I try to pay attention when I get that feeling.
Little did I know one morning many years ago that my path was going to take me up, down, around and over many hills and valleys to experience the joys and sadness that can only be felt by traveling the road I was about to take.
My parents had divorced when my brother and I were tweens. Dad lived in Tennessee, Mom in Mississippi and my husband and I in Alabama and my brother and his wife on the other side of Tennessee.
My Mother was changing, she was repeating and calling more often saying the same
things as though she had never said them before. Mom had arthritis, breast cancer
and Dementia.
Dad’s health was not good, he had prostrate cancer, skin cancer and he was having
small strokes.
To spare every moment of trials I will start with one morning as I sat in the
VA Hospital in Memphis staring at my Father as he lay in his hospital bed with
bandages over his head from extensive skin surgery, a hemorrhage and noticeable
balance problems.
We knew Dad and knew he would never stay in a nursing home since he had escaped
several times from the hospital and one of those escapes was from the intensive
care unit. Dad in his 80’s walked out of the intensive care in his hospital gown
and bare butt, called a neighbor and was picked up from in front of the hospital.
My Brother had arranged home health but Dad would not let them in. His house
was a mess and expired food in his cabinets and fridge. Both my brother and I
worked long hours and lived too far away to care for Dad.
My Father, a unique individual, a Jazz musician and retired business owner. He was quite a character, a ladies man. I called my husband and explained our dilemma. No hesitation, he said do whatever we need to do, God will provide.
Neither my brother or myself could afford to pay for nursing care. That inner
feeling knew what needed to be done. I asked Dad if he would come live with us,
and to my surprise he said yes. Dad knew he needed help.
Turning in my immediate notice was quite a shock to my Boss but we had trained
a student just before I took my emergency leave to see about Dad as if God had
planned that. She would stay and take my place.
Packing up our Father in his 80’s with all his possessions and basically no notice to prepare our house was an unbelievable feat. My Brother, sister-in-law and I packed up Dad, gave away a lot of his things while my husband was at home by himself moving out furniture and shifting everything else. We moved him to our small 1200 square foot home in Alabama. We rented a storage room, gave away some of our furniture and crammed in the rest to have familiar things around Dad and make him feel at home.
Mom was furious, she did not want me to take care of Dad and to my surprise many of our family members were not supportive with our decision. Most people said he needed to be in a nursing home, they just did not understand how Dad was. My brother understood, he knew Dad was not a good candidate for a nursing home and neither of us had the income to provide specialized care.
Dad was a very good camper at our house, his new home and we felt that he was doing remarkably well for having to give up so much of his independence but his condition worsened rapidly. He had another stroke and aspirated, leading to pneumonia. He came home from the hospital this time with a suction machine and the works. Dad did not want to go back to the hospital so we chose Hospice. Dad was with us only four months.
After Dad died there was a lot of need with Mom, her place was a mess, she had put her bills in the toaster oven, one day she told me her left breast was pulling and did not look right. I asked her if I could look at her breast to see what she meant. After I saw, I knew she had breast cancer.
Mom did good with the mastectomy surgery but her memory worsened and she lived too far for me to check on her as often I needed and each time I did she required more help with most everything. We found a small duplex down the street from us and once again we were moving Mom. She lived in the duplex for two years with my husband and I going to her house every day and bringing three meals, giving her medication and baths. Finally her hallucinations were so bad we moved her to our house. Once again we combined possessions but this time would be different.
Mom had what the Doctor believed was Lewy Body Dementia, this was completely different than anything I had ever seen. She had changes like the wind. One minute one way and the next different. Her balance was bad, she did not know she needed a walker until she started walking causing her to fall. She repeated constantly. She did not sleep and we became unbelievably sleep deprived due to these constant hallucinations. I could not seem to explain to the Doctor any of this because the stimulation of the Doctor visit would make her seem somewhat normal only for her to have even more confusion for several days after.
This was the most challenging thing I had ever done in my life. My husband and I had to move our bed to the center of the house to know when Mom was on the move. I simply could not put her in a nursing home and my dear husband was so kind and understanding about Mom living with us.
Mom had this disease about 7 years from first symptoms. The last year "I" was
changing due to sleep deprivation and the constant horrible disease that had taken
my Mom from me. My emotions could not grasp anything, she would scare me so badly
with weak spells, sweats and falls only to "perk up” to almost normal for an entire
day. She would sleep about 16 hours straight for weeks then start waking up early
and seemingly better, then back to sleeping all the time. I never knew what to
expect.
My husband said he was doing better than me because he left in the mornings and came back in evening getting away from it all for the day. I was just barely hanging on. Mom was getting much worse, her weak spells were more frequent, she was incontinent, she had very little memory, she did not comb her hair or brush her teeth anymore and her appetite had declined but at times she could discuss current events. She loved company only to fall apart after they would leave. She would carry on a normal conversation and then ask if we had a bathroom in this house. Many times she thought we lived in a post office or bank.
Mom’s condition had become so dangerous for her that we became a "Locked Facility” to keep her safe. We locked a front and back gate after she wandered out the driveway looking for the kitchen and almost was hit by a car. We had monitors on the floor to let us know she was up and on the move. Mom would become so ill when we took even a short drive in the car. This stopped any chance to get out so we simply stayed home.
Mom and I were basically locked in the house. We had almost become one because
I had to know how much she ate and drank and what came out. If she was cool or
hot, when she needed a bath and what soaps made her dry and what lotions helped
her skin.
Which way she parted her hair (left to right). All her quirks on her toenails
when I gave her a pedicure. What diapers fit her better and how she loved her
feet soaked in warm water and lotion rubs. I knew Mom better than myself, all
her spots and bumps and lumps.
She needed care first but my fatigue was so bad many days I did not dress. My
apperance was probably depressing to Mom but at least I was still on my feet.
When Mom died, I felt like I did too. But my heart is beating and my breathing
continues but the pain in my stomach and chest remain every single time I think
about Mom and continue this even though time passes.
I have to figure out how to live again without restrictions. The locks came off the gates, the monitors are turned off and packed away, and I can walk a little bit further day by day. We can talk at a normal tone and not try and be quiet so we don’t trigger a hallucination. Sleeping all night took some time and showering any time of the day still seems strange.
The guilt stage hit hard, I was sad, low on energy blurred vision and so much
what if’s. Why did I get impatient with Mom? Why did I sometimes avoid her questions?
Why did I not pay attention better when she spoke of that little leaf on the tree
that would not let go. She had mentioned at least 984 times and not once did
I ever really see it. I wish I would have paid more attention because now I am
searching for the leaf and cannot find it, I cannot ask her.
Driving has been difficult, my confidence was lost somewhere during our locked
in journey. I still feel the need to wait for a shower and I cry when a special
music program comes on her favorite stations. The urge is still there to rush
to her and show her Andrea Bocelli is having a concert on National Public Television.
She is not in her favorite chair anymore and the birds are still coming to the
bird feeders but without her watching. Will anything ever be normal again? Can
I ever adjust?
We planted Mom a memory garden (loss of memory) while she lived with us. It was started so she would have nice things to look at. She loved flowers more than anyone I ever knew. She constantly talked about flowers and birds. I would put her out on the patio and to distract her from all the repeating I let her watch me plant flowers and set a pot and a pair of snips close so she could prune a favorite plant. After so many questions about what the name of that certain plant was I started putting little signs up with the name of the flower. That is where the memory garden name came from. The little signs with the names of the plants came out of desperation.
After four years of planting we ended up with paths and flowers all over the yard with little signs and a beautiful memory garden. My heart aches every time I go out the back door and when spring comes again I will probably cry like the rains. How will I stand looking at her empty chair and the flowers springing up. How will I stand not talking about all the beautiful flowers? What will I do with the unused crafts that she could never learn how to do? What will I do with all her newspapers that have been unopened? What will I do when her scent on her clothes are gone? I want to be badgered by the same questions again! I want to be sleep deprived again! The pain is immeasurable.
Knowing what I feel now, I would have tried harder to not have an impatient moment with Mom, I would have never dreaded anything. We cannot go back so do whatever you can that is right because the valley of regret can be deep and the joy of knowing you cared is peace. Try and find your smile again because you might get one back.
Update:
This page was written during the first year after Mom's death. Now as I am writing this update it will be two years since Mom's death in two weeks. I still miss my Parents very much but I have learned how to go on as life does. We all grieve different and nothing but time and faith brings us through. My husband and I brought new life into our home by accepting a gift from our son, a puppy. She has distracted us and brought us so much happiness. She is new energy running around playing with her toys and always greeting us with her wagging tail.
This is our Katie
