See conclusion to the story at www.bookrix.com/-paulashene
When we start out on our journey of life some of us~that would be the optomistic ones ~do not expect to meet some of the nasty characters that life has appear in our path. For some, even when they meet these characters, they do not recognize them or fully understand fully the devastation they can manifest.
The person with dementia can be happy and unaware while the partner must deal with the 'nasty character' that is eating away at the brain of the other with dementia.
It is said that hindsight is a wonderful thing but foresight can lock the door, at least for a time, to Lewy or Al - two of the biggest gangsters of brain robbery.
Al AKA Alheizmer's is a fairly well known robber who has been on a spree of distruction with over 5 million victims in the United States alone where it is counted as the 6th leading cause of death.
Lewy is not as well known as Al but his path of distruction is as devastating. Lewy is sometimes referred to as variant of Al's - a cousin with the same killer instinct.
The symptoms exhibited in Lewys Dementia and symptons in Alheizmer's are related but different. Life span after diagnosis is also vastly different.
Living with either of these killers is debilitating and one must pace themselves to win the race. More tomorrow~
Tomorrow ~ that is a relative term when operating on five hours sleep and the body craves eight. The partner with the dementia is happily tripping through the night and day, while the caregiver partner is struggling to keep up. Picking up towels dropped in various rooms after taking yet another shower or clothes worn, discarded after mere hours of donning by the House Elf. A term lovingly coined by our youngest son who will take the 'night shift' when my body crashes in spite of the known havoc the sleep walker can and does cause.
But then Lewy leaves for awhile and the partner is back. Discussing world news or the state of our finances or the need for getting the car in for it's oil change. Time to play with the dogs, maybe even help with the chores but too soon, Lewys back and the partner stands befuddled, wondering why he's holding a glass and where does it go? Or like now, sitting behind me 'spying', he says. Tomorrow is another day.
#3 Sometimes tomorrow is just another day to cope or like today, one to rejoice. The loved one is back, for now. Thank God, because today is another day followed by hourly wake-up calls in the night. A day with hallucinations following a sleepless night is almost unbearable.
There has been an FDA warning in effect since 2005 stating that the use of psychotropic drugs can exacerbate the symptoms and hasten death, Watching someone unravel is devastating enough without finding that the medicine he is taking is actually shoving him towards his death!
Husband was put on Citalopram, a psychotropic drug shortly after back surgery ~ being told there were indications he was depressed. We agreed that this might be the case as he has had numerous pains for many years due to injuries sustained while in the service and recently weaned from pain killer drugs but left with pain ~ this might be true . Being on habit forming pain killers is not an answer but now to find that, apparently, these drugs are his early death warrant.
After much reading and examining the facts, examing reprospective behavior, weaning from psychotropic drugs is indicated. This means, in addition to symptoms from Lewy, we must cope with withdrawal symtoms as well. Symptoms that magnify in the night causing caregivers to question if this is the course to take. We are only into night three - dear Lord, how many more nights to go? Shaking off the sleep deprivation fogginess, they agree the course must be finished.
Many, many more nights but we may have found one problem solver - what to do when the patient roams? How do we lock them down without harm? Our sleep is secondary until we find this simple answer.
Another person with REM disorder, apparently the precursor to Lewy's and/or Parkinson's has posted on what he does to keep himself in bed and not injure his partner. REM or Rapid Eye Movement disorder is where a sleeping person acts out his dreams, usually violent. Kicking, punching, walking in dangerous places and putting oneself in peril. The paralysis mechanism that occurs when dreaming does not activate leaving the sleeper with the ability to move.
Twenty years ago Paul started acting out his dreams usually associated with getting shot at or being attacked. We sought help and were put on a waiting list for observation.
One night, closer to dawn, he jumped up from our waterbed onto the siderail, walked to the end and threw himself into a corner. He had injured himself but fortunately had not broken his neck. I called the doctor and he arranged to have him short listed and he was in the VA sleep lab the following week. At this point he was diagnosed with REM disorder and given Clonazapam which worked well. Actually too well. He was sleeping close to 20 hours in a 24 hour cycle. After trial and error a maintenance dose was established and continued for several years. He then was weaned off.
Twenty years ago it was not known that REM disease works itself into Lewy body Dementia or Parkinson so twarting this enemy befores he moves in will not happen.
Eighteen years later, when the sleep walking started after psychotropic drugs were given, hospitization was needed, REM disease again was looked at and quasi addressed. Giving him a form of sleeping pill that might help along with the other drugs. This worked for a week. When told what helped, after weeks of waiting, was finally perscribed and given at a minimal dose which helped very little. It was increased but still is not helping ~ it is no where near the dose that knocked him out 20 years ago.
While waiting to see the doctors again ~ this time neurologists ~ containment is needed. This person who posted said a night light in the room is good and to have only a matress on the floor. He fashioned hand cuffs with padding. For him all this helps and works.
For us, not so much. The night light is a great idea but our bedroom has too much in it to dismantle and sleeping on a mattress on the floor is not feasible as he has a hard time getting up from the bed at a sitting level. He is no longer acting out his dreams - just wandering. Hopefully, son is still awake or he awakens me when leaving the bed. What else? What else can be used to help the caregiver contain the wayward sleeper?
The main problem seems to be getting up to use the bathroom ~ cannot find or cannot find way back to bedroom. Lights ablaze on the path do not seem to help as the path always looks foreign to the wanderer.
'Lets go into kitchen ~ open refrigerator ~ leave open. Is there any coffee? maybe I should make some? Oh no, a mess all over. Better head somewhere else. I should go back to bed ~ where is it? This room looks like it has a door but there are toys stacked in front of it. There got to be another way OUT! Oh, here comes that lady ~ she knows where the bed is. But no, this doesn't look like my room. She's telling me to lay down. I will, but when she's sleeping ~ I'll try again to find the way OUT!"
Well, this obviously is not going to work. Main objective is being lost on the way to and from ~ would a rope strung from point a to point b work. No ~ not at night. Let's try a port-a-potty. Well, we are into day four following night three of the port-a-potty.
First night ~ great! Got up only twice and returned promply to bed. Second night, up every 15 minutes. Agitated.
Will see brother next day ~ very excited~ can't sleep! Very tired today ~ saw my brother for breakfast at the Diner. I don't understand most of his joking. Going home to bed. Feel a little better now that I slept.'
Night three ~ up and down but not as much. Still dealing with anxiety produced by seeing brother.
Thought process scattered while signs of OCD behavior manisfesting. Fortunately, today is a holiday ~ was able to sleep in late. Having the port-a-potty blocking the exit door is working. Have been awaken but quickly back to sleep. This seems to be a part of the solution but sleeping through the night is still a goal. Tomorrow is neurology day - hope for positive answers and/or a plan of attack.
#5 Several weeks beyond and we are still seeking answers BUT many forward strides have been made after a major setback.
One night, a week after seeing nurologist who said another sleep test is indicated so a higher dose of sleeping pills might be indicated and he should be started on Aricept, Paul sleep walks the entire night acting act one scene after another. In the morning, shortly after awaking, he gets agitated and trys to hurt caregiver. Another trip to the VA Er to seek help in sleeping. Turns out the trip was a blessing. He was to have started on the Aricept immediately but the interns did not convey that info to us.
That night, the first dose of Aricept given and because of total lack of sleep night before and limited sleep during the day, Paul sleeps the night through! The following day is coherent throughout the day! Wow, what a difference.
Still is shedding the psychotropic drugs so sleep is interrupted but each night is better. A bedroom change is the next thing on the fix it menu.
See conclusion to this story on www.bookrix.com/-paulashene