Sandy posted a condolence
Tuesday, October 13, 2020
Living with Lewy Body Dementia
I don’t believe my dad has gone to a better place, the best place for him is here with us, but I do know his brain is no longer tortured and his body is at rest.
Above our knowledge to manage dads Lewy Body Dementia with Parkinson Capgrass, we found many Doctors, Nurses, family & friends did not really understand it .
Dementia with Lewy body and Parkinson’s the medical term :
The Lewi-Body form of dementia is a relatively new diagnosis, having only been identified in 1996, although the condition has always been around.
Lewy body dementia is the second most common type of progressive dementia after Alzheimer’s. Protein deposits called ‘Lewy bodies’ develop in the nerve cells in the brain regions involved in thinking, memory, movement & progressive decline in mental abilities.
One of the hallmarks of Lewy body dementia is the fluctuation in mental state. Often lucid & clear one day & on the next totally disengaged, confused, disoriented & bewildered. This can occur over a period of hours or minutes.
Capgrass- they believe someone they know has been replaced by an imposter. The person experiencing this delusion may believe an animal or object to be an imposter.
My term of Lewy Body:
It’s a horrific disease that torments the brain; the hallucinations can be pleasant or can be horrifying!! Generally they see animals and children, the disease wouldn’t be so bad if that was all they saw, but the hallucinations can also be horrifying causing extreme paranoia.
Rewind 19 yrs ago ... dad had severe shakes & nightmares, doctors thought it could be the start of Parkinson’s but later dad was diagnosed at St Vincent’s with essential tremors. Dad was pretty good over the next few years and then we started to notice a slight change in his memory.
Towards the end of last year, Dad would drive to the shops, but forget he had and would walk home. He yelled out to mum, Barb my car is gone, someone stole it... you drove down John it’s at the shops... oh I did too!! Another trip to the shops he came home sat on lounge, John were is the shopping.... oh I think I left it at the shops... on his return his shopping bags were outside the newsagents where he left them!
Mum would notice dad driving at 20km along Elizabeth Dr with cars beeping behind, even going through a red light once, he would head down to Lambs Cres instead of Bayswood on their way home. Mum had to chat to him about giving up his license for the safety of everyone. This was a difficult time for dad, he loved driving. Tony took mum and dad in and the man at the RTA commented to dad that he should be commended on handing his licence in , what a courageous thing to do especially when your wife does not drive!
Not long after dad would tell mum he was going to sit for his licence again & why can’t he drive anymore, ‘I’m a good driver!’
Dad started to see things around the house, oblivious to us he was having hallucinations. He would tell mum to get the pest inspector out as he could see and hear ants crawling everywhere and they probably white ants!! Or the time he called tony to fix the cracks around the house, but tony could find any cracks.
Fast forward 2020:
The fires were a stressful time for dad, thinking the house would burn down, Michelle packed mum and dad up and took then to Wollongong for a few nights.
Then Covid hit Mum and dad went into lock down at home. We would drop off shopping and keep our distance... dad started to worsen not doing his normal daily routine.....
A few weeks went by and dad was very unsettled at night, screaming out and waking confused he also fell out of bed one night and split his head. Then the sleepless nights started, it was a nightmare for all of us. He was packing and unpacking bags, hiding his possessions thinking someone was going to rob him and talking to other people he could see in the room. Then he said to me one day, who is that pointing to mum.. it’s mum dad, yes I know but your mum or mine?
Mum took him for another doctors assessment. At every appointment dad would say he was on top of the world couldn’t be better and answer the questions perfectly because he had practiced them so that the Doctors wouldn’t think he had anything wrong.
Mum realized she needed to make an appointment on her own to explain to the doctor what was really going on at home. One time he removed all the light globes, through their electric blanket in the bin, put the rubbish in the washing machine and convinced mum to buy a new vacuum as theirs wasn’t working. Mum cooked spag bowl one night in the electric frypan, the next day it was gone, dad said he threw it out because he saw lights flashing on it and it was going to blow up. Dads doctor refered him to the geriatric team at the hospital to be re assessed and was then diagnosed with Lewy Body Dementia.
Mum woke to find dad with the garden shears in his hand one night, John what are you doing! I’m just trying to work out what wall to open up so I can cut the electrical cords, they are glowing red and the house is about to blow up!
It was the end of May when we had to call an ambulance one night, dad hadn’t slept for 3 nights and was extremely anxious and irritable. I thought they could just give him a pill to calm down but they didn’t. But they wouldn’t take him... I think now they thought nothing was wrong with him!!
so Michelle drove while I sat in the back holding dads hand telling him he was sick and needed a doctor to check him out. I spent the night in emergency with dad, I didn’t let go of his hand, begging him to close his eyes and sleep and when he wakes I could take him home.... but he woke every 10 minutes... finally he had been asleep for almost an hour when all hell broke loose in ER with alarms going off! dad jumped up thinking the alarm was the train he was about to miss and be late to work... he saw monkeys on the rings if the curtains... I remember just laying with him crying.... dad please go to sleep or you won’t get better. ( I still thought he would get better!)
Back home and we went through it all again. Not sleeping for 3 nights, he was delirious and confused. Wandering all night, mum no sleep trying to get dad back to bed, stopping him from walking out the front door at 2am. We then got a night nurse in who to help, she would sit up while mum got some sleep and make dad a cuppa, talk & even give him a back massage which was his favourite. Then us girls would take turns going over each morning to check in on them, most mornings we would take dad so mum could get some rest. Mum started holding on to dads Pj so she knew if he woke and tried to get up.
Dad was admitted to the geriatric ward at the hospital there he stayed for 2 weeks. The worst 2 weeks of my life!
It was the realisation that dad was very sick.
Covid and restricted visiting hours!
It’s here I noticed how bad dads hallucinations were, one of my visits I would walk him outside to sit on a bench seat overlooking the shoalhaven river a few boats went past and I said look at those boats dad, you used to take us skiing here, he had a blank look on his face and replied with - look at those crocodiles, 5,6 I think 7 of them, sandy we need to move now as one of the crocodiles is coming towards us.... then there was the man on the telegraph wires working to fix the wires but he was balancing on a bike with one wheel.... how he hasn’t fallen off dad would say!
To dad the patients were dead or severely beaten up in that ward, he would say don’t look over there, her face her face! Don’t open that door they are all dead.The nights Wardsman who dad used to work with years prior in security, would to call me most nights around 10 asking me to tell dad to get to sleep, he was packing his bag and waking around the ward all night... we would talk to dad and calm him... please go to sleep dad we will see you in the morning...
The team assessed dad and started him on anti psychotic medication to try and lessen the vividness of the hallucinations and help him sleep. After 2 weeks it was apparent to them that dad needed professional care 24/7. We didn’t take too well to that and thought perhaps we can try respite for a few weeks while the new meds kick in and them bring him home. We celebrated mum and dads 59th wedding anniversary in the hospital, they allowed us to bring in cake and flowers for dad to give to mum...dad had a bad night and morning,the celebrations wasn’t so happy .
He was transferred to BAsin View Masonic village, only lasting 2 nights in low care before being moved into high care....as he wandered into other rooms, jumping into bed thinking he was with mum, this broke our hearts. I still thought he would only be in for a few days or weeks until his medication kicked in and could sleep, then we could bring him home... but unfortunately that didn’t happen.
On our visits we each had a special thing we did with dad, mum would take fruit and helped him add stamps to his album & she was able to have lunch daily with dad. Michelle took a chocolate paddle pop and read the paper and did the puzzles, and Karen arrived with smiths chips or a scorched peanut bar to share while she coloured in and painted with him.
My thing was the thermos of coffee, slice or cupcake. Dad always used tea tree oil and I would take a bottle in and rub it between his toes and massaged his feet & legs to keep him calm and often to get him off to sleep.
One of the elderly residents was in a wheelchair, dad thought she was a baby boy, referring her to little baby james on most occasions... one particular day on change over of staff dad asked with a worried and panicked look on his face... where is my baby? Where is my baby? They bought dad out a baby doll... to there suprise dad said thats not a baby.. that’s a doll do u think I’m stupid!!
Watch the puppies sandy, they’re at your feet, ok dad come on puppies out you get... I would walk to the door and open it to let them out, I would catch dad putting a biscuit into his pocket, is that if you get hungry later dad, no I’m saving the biscuits for the puppy in the room next door, can’t you hear it Sandy? I’m sure when dad had his first fall it was in that room leaning over trying to feed a biscuit to what he thought was a puppy!
Dad wasn’t scared of any animals he saw, one day a massive gorilla was on the bed... don’t make any sudden moves sandy a big gorilla is sitting next to you... will it hurt me dad, no it will go away soon.
Living in his mind must have been like a torture chamber. He tried to fight what was happening inside his brain, and the man we thought was invincible, fought to the very end. The trauma of him seeing his family hurt beyond recognition and seeing soldiers shooting at him, not sleeping at night, worried he needed to work, thinking he was 50 not 80, not realising he was retired and being frustrated not able to remember the names of things and finishing sentences.
When I told him he was 80, he looked up and said ‘shit, how did that happen?’ get me a mirror do I look like an old coger???let me see what I look like!!!’
Sadly dad started critical paletic care about 2 weeks ago and it was evident that he was nearing the end of his life. Seeing dad sleeping peacefully for the first time in 6 months bought comfort to us. We took turns sleeping by dads side for the final 5 nights spending 24 hours a day with him.
Last Monday night was my turn and I still took my thermos of coffee but also snuck a little wine in and said cheers dad.... sleep well tonight. Dad was checked every 3 hours and it was the 6am check that I noticed a slight change in breathing and his colour. Holding tight to his hand and telling dad endlessly I love you DA duck , it’s now your turn to rest. He took his last breath at 8.30
Mum, Michelle and Karen arrived with in minutes.
RIP dad your brain is no longer tormented
I will miss u my entire life
I will always be your little girl.