A Fast Onset LBD Journey: He Is Still In There

Dad started working when he was 10. You see, many little boys. born in the Great Depression and growing up though the WWII years started looking for their first pennies early in life. Dad’s paper route purchased a bicycle first – so he could take on more routes. And then he won a set of dishes for his mum, a pair of sneakers, and the list goes on. He also ran after the ice wagon and tried to gain a few pennies by assisting somehow. Age 14 saw him go out on the fish boats during the Summer so that he could earn more money and buy a car. With this car, he could then attend University and eventually article and become a C.A. He was an executive, a father, a friend and colleague, a dynamic husband. He was the one that every woman and every man wanted as a boss. You know the type.

Fast forward 40 years…2003. At age 68, in excellent health, Dad made the conscious decision to work 4 more years in order “to pay for excellent elderly care should your mother and/or myself need it”. All was in order.

Possessing excellent and even above average health, a car accident gave him a broken arm. It did not heal properly…he needed a general anaesthetic in order to put a steel plate in. Less than one year later, he required open heart surgery. Less than two years after that, he required surgery because of being diagnosed with bowel cancer. He experienced delirium coming out of this surgery. He would never quite be himself again.

Dad did return to work. My parents managed to take a couple of shorter trips. On the weekends, Dad enjoyed going for long bike rides in order to “get back in shape”. Mum would garden, enjoying her sweet little Westie dog. They were planning a wonderful luxury cruise September 2009.

However, it was still Summer 2009. Mum and I returned home one day to find the police in our driveway. Dad had called them. Mum was requested to take his cell phone away…we were stunned. I have no other words right now.

Well, “it”, whatever it was, progressed rapidly. Within 6 months Dad was diagnosed with LBD. What was this? Some said dementia, some said neuro degenerative disease. Some claimed LBD was Alzheimer’s. Still others claimed he was having hallucinations and psychotic episodes and we were told he would become violent. Much rhetoric…

And then there were the drugs…heart medications plus aspirin, Tylenol, two antipsychotics, two anti depressants…all at once! What was going on? Poor Dad…he asked me a few times what he was “doing wrong”. How he could not seem to “do anything right”. My heart broke and then continued to crack again and again.

Local health authorities counselled Mum to hire help. It was way too early for residential care. Mum and I stated that he had gone from working full time to needing assistance with personal care within a year…surely he should be put on the 1.5 year LTC waiting I list?

No. Hire home assistance and send him to an adult day care facility. The day care facility provided 4 hours of care one day a week – and there was an 8 month waiting list. The doctor forgot to put him on the waiting list. And so although we continued to get an update re his waiting list status…no one could give it to us. (It would turn out our file was mixed up with another family with the same last name.)

October 2011 Mum met with a social worker via a healthcare region outreach program, the normal protocol. The social worker inquired about home care…we had tried but home care workers were just not trained for full spectrum dementias like LBD. Mum requested a long term care spot again…at least the waiting list. The social worker looked at my Mum like my Mum had three heads.

November 2011, Dad was put into 1 month of private pay respite care to give Mum a much needed rest. The public facilities would not give us a respite bed even if we paid for it because we were not on the long term facility health care wait list.

Dad lasted 6 days…the respite care facility shipped him to the local hospital. He was in emergency for three days…the bed was about one foot too short for his 6’3″ frame. His blood sugar was very low…and he was dehydrated. I believe this was behind his problems in respite care. Coupled with the over prescribed drugs, it was a recipe for disaster.

He would spend then next 6 months in an acute hospital bed…literally resented by most because “the elderly are taking up way too many acute beds” and “I didn’t become a nurse too look after loony old people”.

Mum and I advocated for Dad re his drugs and care. Thank goodness we were there. We fed him two meals a day…plus extra snacks. We informed the dietician that salt, gravies and sauces were not an issue now. Dad had lost weight…and besides, I hate to say it, a massive coronary might be a blessing for him.

Much to the Doctor’s chagrin, his drug dosages were lowered, only after an episode where his blood pressure dropped to 70 over 45. However, nurses ordered PRN’s liberally…if Dad did not understand what they were requesting him to do…then he was typed as “refusing to follow orders”. This could not have been farther from the truth. Three is just so little knowledge of LBD.

In June 2011, Dad was finally stable enough to move into a sensitive care unit in long term care. Care workers complained about his height, his strength, the fact that he was still eating and drinking and they simply did not have the time to change his pads so much because “he goes more than other residents”. And, by the way, would my Mum and I feed him because they would not have time to give him all the food and drink he requires.

Again, the drugs were upped. We explained it was environmental. The LTC agreed to make the requested changes to his care template…but did not follow through. Again, we advocated for Dad to be taken off every single drug and cleaned out. I mentioned to the doctor that drugs, for Dad, were contraindicated. Mum and I noticed that Dad’s behaviour really changed for the worst after drugs were administered. The doctor agreed to lower the dosages however reluctant.

There was still something very wrong. We discovered he had been given PRN orders…and we had not been informed despite making the request continually.

Finally, we drew the line. No drugs…any kind…over the counter or otherwise. A flu shot only. Nothing more.

October 2013, the here and now. He is off all drugs, enjoys his meals, and my company. I assist with his personal care and nutrition some 4 hours a day…as does my elderly Mum.

He is far more peaceful now…and caring for him is a pleasure for me. A little bit of softness for him in an harsh and judgmental world.

My current work? Advocating for an increased knowledge and discourse base re those diagnosed with Lewy Body and other Neurodegenerative diseases.

And thank you for your read.

Elizabeth Dunbar

Oct 28, 2013