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..Caregiver of the Month
October 2003
Kim Okamoto -Tout

A Stroke Of Good Luck

Many people refer to the saying ' a stroke of bad luck', yet for my father, and me his literal stroke was in a twisted sense, a stroke of good luck. I remember it as if it was yesterday:

I was home for lunch, when my oldest daughter told me that there was a phone call from my father's friend in California. She was cautious in her explanation of the call, as I believe she understood the severity of the dialogue. "Grandpa had a stroke mom"…. is what she said. Then added "but he is okay…"as she tried to reassure both of us. This is when my life as I knew it changed. That one sentence was the segueway into my existence, as I know it now. That was June 2002. This is July 2003.

With thoughts of the years before, years that were lost, years that could never be replaced. Years of yearning for my father's companionship and love, years of not being a daughter, years of absolute lacking. Missing years, plain and simple is now what I truly wanted to recapture. We were involuntarily estranged from each other when I was a small child only to be in contact after the deaths of both my mother and only brother. I allowed for my father to come to live with my family and I. I was told of his state of health, yet I was not told how hard of a journey this would be, not just for him, yet for all involved.

My father suffered from a stroke the Tuesday before Father's Day 2002. The stroke left him vulnerable to say the least. He now not only was a stroke survivor, he had been diagnosed with Multi-Infarct Dementia or Vascular Dementia (VaD). Atop of this, he is also a diabetic and has hypertension along with having a stomach sphincter that need to be opened every 6 months or so due to severe nerve damage from years of alcohol usage. Not only was I allowing myself to care for my aging father, I was allowing my life to be totally altered in exchange for his survival.

July 14, 2002, I put in a leave of absence from my fulltime job. July 18, 2002 my husband Jerry flew from Indianapolis to Los Angeles to 'retrieve' dad from the facility he was in. Through countless phone calls with my father and tele-conferences with doctors and medical specialist, I knew that we had to 'move' dad as soon as we could. He was placed into an AD (Alzheimer's) unit and was not allowed any freedoms due to his lack of reality. He was on several different medications including Haldol for hallucinations. He was not a good patient. He was violent with the staff, he was totally confused and all he understood was that I was going to 'save' him. Jerry and I were going to 'bust' him out. And I had to, he was not thriving, he was in all actuality, dying.

July 19, 2003 Jerry arrived home with my father. As they drove into the driveway, I could barely see dad sitting in the passengers seat. He was so small, so fragile, and so frail. He is American born Japanese, so you can imagine that he is small framed and yes, people always ask if he is really Mr. Miyagi. I could not grasp what was about to unfold. I was unschooled about all of this. That was definitely about to change.

The first thing that I remember was helping him out of the car and he not even knowing who I was. The next thing was 'changing' his undergarment. Talk about real reality, I was there, smack in the middle of it. Dad was still my father, as small and feeble as he was, he was also still my hero.

The first months were at least, an educational experience. My father truly had no idea as to who I was. To him, I was a friend from 1930 something. Mitsiko was my name. I dismissed that easily. It was hurtful, yet who was I to be needy. Dad was the one victim, not me. My husband and I did everything to make dad comfortable and safe. We rented full-size bed rails only to learn that he was climbing over and out of bed. We latched every door in fear that he would try to go 'home'. We covered doorknobs with safety devices, you name it, I think we did it. Dad often wandered at night, especially after 2-3 a.m. So we acquired a baby monitor in order to keep track of his nighttime doings. This did no good what so ever, he was and still is so very quite. So quiet in fact that one night he reheated dinner without making a noise, and mind you, he even did his dishes. He was getting up in the middle of night and wandering right into the kitchen, where he succeeded in finding foods that were detrimental to his diabetes. I began hiding sweets far and up high to ensure that he could not find them. I remember one morning taking his blood sugars and to my amazement it read over 200! I asked if he had a 'snack' during the night, and of course he denied, well, actually he was right, he did not recall even awaking at all, let alone wandering. Then another night he decided to make coffee. It was by the grace of good luck he did not start a fire. I awoke the next morning to find my small cooking pan totally white on the inside from water being boiled down into steam. This is when we decided to 'pull' the stove knobs. Taking away these freedoms were the 1st among many to come.

During the 1st 2 weeks of dad living with us, he was hospitalized for possible TIA's, malnutrition and dehydration. Believe me when I say, ignorance is not bliss. I was doing everything I could to help dad until an Internal Specialist MD could see him. Early one morning, I went to awaken him for breakfast, to find that he was hardly coherent. I took his BP and it was barely 60/40. This absolutely warranted a call to 911. So I did call and he was taken to the local hospital and admitted. This 1st hospital stay was the most educational experience as dad's physical ailments went. This is when I learned about the damage from his stroke. He had swallowing problems, left side weakness, and muscle deterioration from being 'tied' down while in a unit in California. I also learned that the reason why he was so dehydrated and malnourished was because his stomach opening was slammed shut. The nerve endings were damaged so severely that it was not opening to allow food to reach his stomach. In California, they addressed this by feeding him through a tube and writing it off as acid reflux. The man was so close to death that it was unreal. He also suffered from overall somatic problems.

Being told about all that was wrong with dad was one thing, to see and be able to tune into it was another. The Internal Medicine doctor that saw dad actually offered for me to have him placed into an extended care unit for a while, I declined. I knew that if I agreed, that dad would fight everyone including me, and I was not prepared for that anymore than I was for what was in store for me over the next several months.

He was in the hospital for 16 days. Everything had been addressed properly as dad's health issues went. All except his dementia. He was still coherent enough to be creative enough to hide things, such as his confusion. The next trip to the hospital is the one that gifted us with a great Neurologist. That is when I read the report from dad's MRI. It showed several places of damage from infarcts, or strokes. Very eye opening to me, as this is when I began to truly understand what dementia is.

I joined a local support group for Alzheimer's a month or so later in order to attain my sanity. After several weeks of days on end of doing nothing more than taking care of dad, I was burning out. I wanted so much to be able to go back to work, yet there was no way for me to do so with dad's dementia. He could not be left home alone for any extended period, in fear that he would try to either cook or worse yet, get lost in the house. His dementia is the type that comes and goes at its own will. He can have days on end where he appears normal and then out of the blue the confusion becomes so heightened that it is impossible for him to hide it. This is not AD; it is vascular dementia, yet there are so many similarities. The difference that I do notice is that at least he has his sweet personality in tact, unless he is challenged by me not allowing him to sleep most the day away, or denying him donuts when his blood sugars are high enough for insulin coverage. Even though at times, I feel VaD is as horrid as AD, yet it really does not matter. Dementia is dementia, it takes the mind, and it takes it's time and the victim has no say. I was able to find some type of solace in the AD group. There I found, are many more than I that are fulltime caregivers, who in fact have been caring for their loved one for much long than I. So I know that I am not alone.

Shortly after his discharge from his 1st hospital stay came the falls at night. One fall warranted an ER visit that ended up being a 2-day hospital stay. While in the hospital, the doctor again offered extended care for dad and again I declined knowing that he would rebel. There was no medical need for him to stay, so I decided once again to take him home.

We actually purchased a driveway motion monitor to use in conjunction with the baby monitor, so we could in fact hear when he would get up at night. It is a motion detector that emits sound away from the source. We placed the monitor outside the hallway door- well, thinking that this would help detour him from fidgeting outside his room, only for him to 'crawl' under when he wandered at night. How creative he was.

When we got back home from the hospital stay from his fall, I felt as if there was no other option other than to put the motion detector in his room. We placed it on the wall beside a desk, far enough away from his bed and disguised it to where he did not know it was there. Whenever he stands up, the signal goes off alerting me to his movements. Whoa, was that an eye opener. He was actually waking and getting out of bed at least 6-10 times a night and yes, he wandered aimlessly. At times, he would get lost in his room, thinking that what he had dreamt was actually happening I recall the first week of doing this as being nothing less than grueling. His dementia was not allowing him to sleep for more than 2-3 hrs at a time and when he would (does) wake up at night, it was often from a dream state that he could not and still cannot differentiate from reality. He often dreams of when he operated his own trucking company. To this day, he still believes that his bedroom is a trailer or something along that line. This is not good for me, as a caregiver, because I know now for a fact that he cannot separate fact from fiction, and also I was not resting.

We at first, would use the phase "you had a dream" when referring to dad's night time confusions and after a few months, so did dad, even though he 'knew' in his mind that it was 'real'. Even with all his bewilderment, dad knew he was not the same as before. He knew there was something different in the way his mind was working. There have been countless times where he and I talked about the past year, only for him to realize for that moment in time that he is not the same; that his 'thinking' is diminished. He often refers to his dementia as a fuse gone wrong. Sad, so very sad to see my father try to grasp his reality.

Since the beginning of summer last year, dad has been hospitalized 6 times due to various health reasons. One more than an another, which has either been TIA's or the even more insidious villain, a slight stroke that has left him physically close to where he was when he first came to live with us. Over this time span he has been under almost non-stop Physical Therapy, Occupational Therapy and occasionally, Speech Therapy. When I put this into perspective, out of the 53 weeks he has been with me, I believe there have only been maybe10 that he has not had some type of Therapist visiting him.

Caring for a person with dementia is a very demanding and trying experience, because you learn early on that you are not in charge, that the dementia itself calls the shots and if you don't like it, too bad, you have no say. Yet caring for one with dementia, sundowners and also a mix bag of health problems is in a league all it's own.

The road of caregiving is a long and often times lonely one. As there are many times when I feel abandoned by everyone. That life is just passing me by without so much as a wave. Then I reflect back on how dad came to live with me; and all the hardships he has endured just to survive, and it all falls into perspective. I CHOOSE to do this. To able to help him sit up in bed and see the glimmer of hope in his eyes; to be able to laugh at his little quirks with him; to just be able to be with him is payment enough to sustain me until my job as his primary in home caregiver is done.

We are now in the beginning of the 2nd year together and I can sincerely acknowledge that when the time comes to facilitate dad that I will be able to do so with self-assurance that I have done all that I can humanly do.

Some of the biggest lessons I have learned about myself are: I am a very compassionate, loving daughter. Aside from not knowing him at all I was and am able to love him unconditionally. I will make sure that financially there are enough monies to help my kids when or if the time arises that they have to care for me when I grow older. Financially, it has broken us to do what we are doing. We are like many families that have had to file bankruptcy in order to take care of an aging parent

Gail asked me, “ How has this helped you and your family on a spiritual level?”

Honestly, it had done some damage and also a wealth of good. The reason I say this is because dad requires someone to be with him constantly and my kids, who are 20, 18 and 14 are all very busy in their lives. My oldest moved out because the stress was too much for her. Having to have her grandfather, who was truly a stranger, constantly in her home, usually in the front room, truly depressed her. In the beginning there was a emotional split between us, yet since I have accepted that she is not me, and she has accepted that right now, her grandfather is top priority. She has since been able to come to terms of him being here and loves him dearly yet is barely able to commit helping. She feels overwhelmed by his illnesses.

My son who is a senior in high school and my youngest daughter who is a freshman this year, are both quite active in the music department. They are in marching band season and really hate that I cannot participate as a parent. As a matter of fact they both were overwhelmed in the beginning because they saw there mother go from an active mom to a stay at home mom and this was difficult for them. They both are great help when they are home, yet they also have a fear when I ask for them to stay with dad...this is because there are just too many times when he has gotten confused and what not; thus it makes them very uncomfortable.

My husband has been working 2 jobs, to help offset the lack of monies. One job is fulltime and the other is part time nights. Our relationship has suffered tremendously because there is no 'us' time, other than the occasional few minutes here and there BUT, the main lesson that is being taught and learned is that we are a family and this is what families do for each other. My fathers' mother died when he was 2 and he was actually kidnapped in 1923 from his father in Arizona and taken to California. He did not find his father until he was a bit older. So family to me is everything. Now, I am actually able to share this 'family' thing with my children and hopefully they will in turn, respect and cherish family as we now know it.

All of this has brought us much closer recently because my family now is beginning to comprehend my commitment in caring for my dad. However, the stresses are still there.

I have to admit that I have anxiety/panic disorder and was working a wonderful fulltime job as customer service, In my private life, I had made huge strides and just when I was winning my own battle, I began to help dad fight his. I was actually agoraphobic 10 years ago, and my choosing to take care of dad put me back where I fought so hard to escape from, yet, there is a reward. And that is my time with dad.

There is nothing that can ever make me change my mind that what I am doing is not exactly what I am supposed to be doing. I have no regrets. What this has done for me is put life into perspective. Life is a gift. Everyday is different and I am learning to appreciate just how precious it is. Through taking care of dad I am learning that there is nothing that I as a person cannot handle. And also how blessed I am to be able to do what I am doing

In writing this I have been able to cry the tears that I have not allowed to flow over the past year. I want to thank Gail for being the person she is and allowing me to do this in order to 'heal'. Thank you Gail…may God bless you as you have blessed me.

Kim Okamoto -Tout
Email: Kim

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