Charles Jackson, Age 61
I cannot write how the victim of the disease feels, but I can share what the Caretaker feels. Let me share a brief history of Charlie and I. Charlie and I married in 1968; he was 39 and I was 19. It was his second marriage and my first. We caused a bit of 'heat' from friends and relatives alike because of our age difference. Today it would hardly lift an eyebrow. We were very much in love with one another and really enjoyed being in one another's company which was always short because Charlie worked two jobs to make financial ends meet. I seldom got to spend lengthy time with him during the week until he came home at 9:30 or 10pm. I always had dinner ready for him, he ate, watched a bit of news and was off to bed to start the day all over again at six in the morning.
He did manage to come home between jobs and spend 30 minutes or so with me. We talked about his day; he enjoyed a cold beer and dashed to his second gig. Weekends were just as hectic because he worked half a day on Saturdays. Sundays were used for catching up on sleep (usually napping while reading two Sunday papers). If he wanted to go fishing (his favorite thing to do) he did so. Visiting with relatives or friends, shopping, all had to fit into a day and half at the end of the week.
When we first married I worked for two years, then stayed home for seven. I returned to work to earn money so we could take a 'real' vacation, not just one where we visited relatives or managed to visit Canada for a few days. I wanted to visit Hawaii and see other exotic places. That would take substantially more money than we had available in our budget. My returning to work allowed us to travel in style and we enjoyed seeing new places and being exposed to new people.
We made an unexpected trip to Egypt in 1982 which was a highlight of both our lives. Charlie never forgot it and seemed very much 'at home' in the desert.
Charlie at the base of the Great Pyramid, getting ready to take a ride across the desert on camel back
Charlie talking with two Egyptian brothers at the base of the Pyramids
Charlie enjoyed talking to people. He genuinely loved interacting with everyone. If we went shopping in a mall I would always come out of a store to find him talking to a stranger, engrossed in deep conversation. People loved talking with him. He had a way of making others feel at home and would often tell Charlie things about themselves "out of the blue" because of he had a way of making others feel "accepted" and "at ease." He never passed judgement on others, and just listened. It was one of the things I found remarkable about him!
Charlie standing in front of a steam vent of an active volcano on the Big Island of Hawaii.....
In 1993 we moved from Boston to a rural section of Maine. It was a big move for both of us. Charlie was born in Massachusetts, and I lived in Massachusetts for 34 years. We were both starting to 'feel' the tenseness of living in a metropolitan area that was quickly being inundated with a larger population. Opportunities arose where we could leave Boston, and we took advantage of them.
We lived in relaxed bliss for about 3 years until I noticed Charlie started changing his everyday routine. He was a man of fixed routine, never varying anything unless it was an emergency. So when he repeatedly started doing things differently, it began to make me pay attention.
I did not keep a diary or journal while all of this was going on. But years later, when I got a "hold" on my life again and gained my balance, I sat down and wrote from memory the startling moments leading me to realize that Charlie was in trouble, and how things would never ever be the same for either one of us again. It was the beginning of the Long Goodbye.
Why am I sharing them with you? Because more and more of us are being exposed to this disease either thru relatives, parents, friends, or our spouses coming down with Alzheimer's. Eventually (unless something is discovered to stop it) practically everyone we know could be touched in some way by this disorder. So that you will have some understanding of what you might observe or experience, I share part of my experience with you.
My Journal
My journey stated about six years ago. My husband is in a Veterans' Nursing Home and is still hanging on. For this, I am grateful. He is remarkably healthy at 73 years old. Only the disease has him withering away. Eventually Alzheimer's strips the body of performing the most simple functions including breathing, and this in the end is what kills the patient. The journey begins.......
June 2000 - First Entry
Boy! Did I just come through an adventure in my life! I don't know how I came thru it all alive. I do know that at at one point (more than once) I wanted to die. Die in the sense of desperately needing and wanting to "go home." I needed to recycle, get away, to lie in the comfort of 'nothing-ness.' I needed to be in a place where absolutely nothing happened. I needed to be in a place where demands were not put upon me; some place where there was peace, total peace. God, how I needed that!
I never knew all those times Charlie looked at me and said "Honey, I love you" that one day he would be incapable of saying it. I never knew in those days that Alzheimer's would become the wielding force in our lives. You never know what is waiting around the bend in your life for you. No matter how hard you try to "live right" life can turn around and kick you, pull the rug right from under your feet, and tear your heart in two! Life can suddenly become a living hell. It can take you to the depths of despair; it can make you angry. It can make you curse the moment you took your first breath of life.
Entry Two
Part of him was missing ----- I could see it in his eyes when I talked to him while trying to carry on a conversation. It was as if he was divided. Part of him was with me; a great portion of him was in some place distant. He was far away and slow to return to the "here and now", and to be quite frank, the portion of his mind that was away never did reunite with the part of him that sat before me. I did not realize this was the beginning of that horrid disorder Alzheimer's, and would take him farther and farther away from me. It was the beginning of a living nightmare, a pair of broken hearts, and the ending of an intimate relationship. It was the beginning of my worse sorrow and many moments of despair. What would I do?? Nothing! There was absolutely nothing I could do to stop it.
Observations:
I found Charlie washing dishes in the bathroom sink this morning.....
He has forgotten how to use the salt shaker...
He has forgotten how to use a knife and fork...
He has forgotten he is supposed to pull up his pants after sitting on the toilet and came out of the bathroom with his pants around his thighs.....
Entry Three
I heard a 'thump, thump, thumping' noise. Charlie was dressing himself in his 'dressing room' and when I looked up, there he stood across the room with both legs in one pant leg. The thumping sound was Charlie hopping across the floor to come sit by me. I was dumbfounded and horrified! Here was a grown man who has been dressing himself since he was four years old, standing before me with both legs in one pant leg.....
Entry Four
Charlie was determined to go to our local store down the road. I had long taken his car keys and hidden them so he could not drive, because he was reported being seen driving on the wrong side of the road. I told him he could not go to the store. He, like a child asked me "Who's going to stop me?" and off he went down the driveway on foot. I panicked! He could have been hit by a car or truck if he decided to veer into the road. Since he did not have his right mind, he could not trust his judgement. I quickly picked up the phone, called 911 and reported him. He managed to walk down to the store (about a 45 second ride by car) and the store's owner kept him 'occupied' until the police arrived. They drove him back home.
Entry Five
I would not let him do what he wanted to do. I tried to hold him back and a look came into his eyes that showed me someone else was there. It was not the real Charlie. Someone with hatred had stepped in and took over his body. He wanted to do what he wanted and this other 'Being' told me to "let go of him" and lifted my grip from his arm. I could see the anger, the hatred. A part of me felt afraid. I did not know the intruder and felt he could physically hurt me. This was not Charlie, but a different 'Being.' I really felt helpless. What could I do?? How long could I hide the seriousness of his condition from myself and others; and how long could I stretch out what was left of our normal relationship? I felt that all was lost!! Inwardly I began to panic. What went wrong? How did things get to this point?! There was nothing I could do to stop it! Absolutely NOTHING!
Entry Six - July 2000
I remember one time Charlie and I was preparing to go into town to food shop (a 25 mile round trip drive). It was obvious to me his memory was failing but I had hopes in the back of my mind that he could control it to a certain point, and if he made an effort to fight to remember, he would not get any worse. Well; those hopes were dashed. When we got into the car, Charlie got into the back seat! I asked him why was he sitting in the back and he replied he was driving me into town. I was horrified! How could he think he was going to drive the car from the back seat? I did not drive at the time. In fact, I did not take driving lessons until after I admitted Charlie into the Nursing Home. What was I going to do?! I panicked, yet I kept it inside. We had to go shopping, so I proceeded to guide him verbally, keeping his mind focused on the road and observing the rules of the road. My personal nightmare was opening wider and wider with time.
Entry Seven
I remember it took Charlie an hour to put on his snow boots every time he went into his room to get dressed. An hour...... what was he doing so long? When I went to check on him, he had laced his boots every which way but right and tied the strings around his ankle and knotted them so many times and so tightly you had to cut them to get them off his feet. And he would not accept help. He vehemently refused and became angry if I tried to help. He got to the point where he could not zip his coat. He could not button his shirts properly. He always looked like a toddler who tried to dress himself. He could not fasten his belt around his pants, and at one point began to tie his belt instead of buckling it. Eventually he always forgot to zip his pants. Eventually, he began putting his shoes on the opposite feet. When he dressed for the wintry outdoors he forgot to change shoes and thought it was OK to go outdoors in the snow with bedroom slippers on his feet. He soon lost sight of the difference between flannel pajamas and flannel winter shirts and would keep his pajamas on when going outdoors.
Entry Eight
One time, actually more than once, Charlie would half dress. Instead of pulling his shirt all the way over his head and down over his body, he would somehow insert his arms into the sleeves and pull the shirt past his head so that the head opening was completely past his head and at the nape of his neck... And I did not help matters any because not knowing what to do, I chastised him like a child which made him even more confused, and upset him. I was lost... He was lost....... How did this happen to us? We were a very well synchronised couple who loved and enjoyed each other's company and now I found myself regretting him and his condition. There were moments that I hated him..... After 30 years of marriage, I hated my husband's display of memory loss.
Nursing Home Entries
On the day I admitted Charlie into the Veteran's Nursing Home I thought my heart was going to break in two and I was going to die.... My friend Jill drove us there (an hour's drive each way). I had some of Charlie's clothing in the trunk of the car and we walked him to the reception desk to announce our arrival. We were met by the head of social workers and the head nurse of his new home. They talked to Charlie like he had always lived there and walked him to his new room to get him settled in. Charlie, being the sociable person he was, talked with them like he had always known and cared about them. As his frame stepped over the threshold of his new room, I could no longer hold it in. I stood up against the wall and cried ..... How could this happen?? Our marriage was not supposed to end like this! We were supposed to have normal lives and live together in our new home in Maine. I could not believe that it all came to this end. The staff divided to take care of Charlie and to comfort me. I could not let him hear or see me crying because it would upset him, and I didn't want to do that...
Every time I went to visit Charlie (five months after I admitted him I had my driver's license) I cannot tell you how I had to drag myself to walk thru those doors. Seeing him there in that condition hurt. I often had to keep myself from crying while sitting with him because all I saw was a beautiful man who was an excellent husband to me and it was all over. Nothing could be turned back to the way it used to be. At first he was still very sensitive to my moods and could look at me, see my sadness and ask if I felt alright. A few times I would cry and he would cry with me__ the pain was so unbearable. I learned how to shield my pain while with him because I did not wish him to feel upset. But the worse time (and still is) was when it was time for me to leave.
For a year, when he still had some memories of 'home' whenever I told him I had to go home, he used to say "I'll come with you." What sadness.... It took everything in me to tear myself away to leave, and he would walk me to the reception desk thinking he was going to go with me unless I summoned a caretaker to divert his attention so I could slip away like a mother leaving her toddler. The remorse I felt driving back home was great! The entire situation drove me into a very deep depression. I no longer cared whether I lived or died and very much wished to die. My purpose in life was gone__ In fact, I began planning my death (another story).
November 23, 2000
Charlie recognized me as soon as I walked into the room today. As a matter of fact, he saw me before I saw him and we had an excellent visit together. I wheeled him to his room after lunch and we sat together. He held my hand so tightly, even after he dozed off. I had to pry my hand from his.
They are using a harness to get him in and out of bed now. I rubbed some lotion into his arms and he rubbed me back over and over. He touched my face a few times and told me that he loved me with all his heart __ and I love him too. I would never hesitate to be his partner again should we meet in a future life.
January 2001
This morning I woke thinking of Charlie and reviewing his present condition. Today after almost 3 years of being in the Maine's Veterans Home Charlie cannot care for himself. He cannot feed himself. He cannot walk down the hall. He cannot go to the bathroom and must wear diapers. He cannot bathe himself. He cannot dress or undress himself. He cannot comb his hair. He can only smile, talk about things or situations in his own private world and wave to you. He still will give you a kiss if you ask for one. He will arrange your clothing if you sit with him and are close enough for him to reach you___ and yet; I am most grateful for all of this.
My husband's room mate laid sleeping peacefully on his bed. Not a sound came from his body. Charlie slept in a semi-restless state. His feet occasionally kicking mildly at a target only he knew in his dreams. He often did the same thing when he was of normal mind and living at home. He was talking in his sleep too. Couldn't quite make out what was being said, but I felt assured as long as he continued to talk that he was somehow Ok; for he has always been a 'talker.' When I look back on all of it, we had so much together; not material things; but we shared everything. We were one another's lives. One could not ask for a better husband. I often don't know how he put up with me, but he loved me with all of his heart and woke each morning giving me a kiss on the cheek or forehead while I lay sleeping.
Charlie in the Day Room at the Nursing Home
Charlie died in late February, 2003. He got to a point where he went totally backward. He was rarely cognizant of anything or anyone around him. He could not even sit in his wheel chair any more and became totally bedridden. He could not eat or drink and he refused any attempt to be fed any food or drink. His time was near and he knew it. He eventually developed pnuemonia and it wasn't long after this when he passed away.
The night before he died, I was getting ready to lay down to go to sleep when I was compelled to get a pencil and paper. Charlie popped into my mind and I felt words flow into my mind. I think some how he knew I would eventually create this Blog, and he wanted to leave a part of himself behind. So here it is.....
I Passed away from the World today,
I spread my Wings and flew away.
Closed a Chapter in my Life,
Took a Bow, then Kissed my Wife.
I spent five years in a Nursing Home
Many hours I spent alone.
I had to Balance my Negative Deeds
Done to Others when I made them Bleed.
I caused much Damage, caused some to Die!
Truth is being told! I have no reason to Lie!
In my Lives, So long ago,
I was a Leader and had to show
How to Live the violent path of Life,
How to Struggle and deal with Strife.
I taught Them how to Fight and Kill;
It damaged Others, but it gave me no Thrill!
When I took on the role of a Leader,
Would have been better for me if I had become a Reader.
For the burden taken as Head of a Tribe,
Greatly lowers your Spiritual Vibes.
It was in This Life I chose to Pay,
As a result; in this Bed I have to Lay.
Now I have Erased this Debt,
And the Balance to those I have Harmed has now been Met!
Living with Alzheimer's is a difficult, frightening time. It is difficult for the person who contracts it and it is difficult for the loved ones involved in caring for the victim. If Alzheimer's enters your life, get help as soon as possible! Do not walk alone in your journey. It is a draining process in and of itself and quickly burns out the caretaker, making life quite overwhelming. As much as you do not want to face the fact that you will have to contact a Nursing Home, do so as soon as you realize that you 'cannot continue to do this alone.' You will find that it is best for all concerned.
Now I leave you with my words:
If you love someone, hold them Dear,
Because they might not be with you this same time next year!
Life will often step right in and bring pleasant routine to a screeching end.
Do not hesitate to show your love;
Either one of you might find yourself residing "Above."
Reach out and touch! Give that extra hard hug!
It's good for your Soul and Spirit to demonstrate your love.
May you be blessed and fortunate enough to never experience watching a loved one die. May peace, harmony and joy reside with you always!!
