Showing posts with label Alzheimer's. Show all posts
Showing posts with label Alzheimer's. Show all posts

Friday, June 24, 2011

Remember Me

My grandmother, aged 21
REMEMBER ME
Do not discuss me if I'm not present
My mind is foggy but my heart is clear
Do not criticize my imperfections
If only i could choose to remember even the simiplest of tasks
Do not resent my frequent funny questions
I'm scared and confused
Your ansers slips from my desperate grasp
Do not stop loving me because my actions are inappropriate
Do not resent frequent pacing or attempt to "go home"
This is not my home. Nothing here is familiar or reassuring
If only I can go home. I would surely find my memory there
Do not remind me of my recent hurts
I do not recall that my mate has passed away
Do not speak to me as a child
I have a lifetime of experiences despite my childlike ways
Remind me of your name and the place you hold in my life
I would love to recall, for  I feel your love and kindness
Show me the Word, nature, music, art
For I have forgotten the amazing joys it holds
Allow me to use the tools that remain to hammer out my mark
and wrench my heart
Forgive me my imperfect past
If I only remembered, I would surely apologize
You need not fill our time with many words
Your presence helps fill my void
The blame does not live with you or me
Love me for who I am and the person I used to be.

Written by an Alzheimer's sufferer

Sunday, June 19, 2011

From the dark side: The end...a stir fry

Today is Father's day, I always struggle with Father's day mostly because of the past I have with my Dad. I thought maybe I would just sleep through the whole day until I was literally guilted out of my bed, forced to come downstairs and put on a smile. Since about 14:30 this afternoon my sister's voice, blaring as she bosses us around has had the same effect on me as nails on a chalkboard.

The reason I have been writing this all this about my grandmother is because this week we finally put her in a home. Granted she really should already been in a home years ago but my Mom just couldn't let go. Up until just recently my Mom was the centre of my grandmother's universe and she couldn't stand to be away from her. My mother believed that once my grandmother stopped responding to her love that then it would be time to let go. I think that my Mom carries a lot of guilt because it was that idea that led to disaster with my grandmother breaking her hip and her final decline into complete insanity. This led to a year of hell for our family that caused a breakdown of our relationships, isolation, depression and a whole lot of anger for all of us. If my grandmother was herself she would be horrified at all that happened.

Now for what I see as a true tragedy: My grandmother was raised to believe that her most important place was within the family. She may never have had a career, but she worked twice as hard for her family. She came from a wealthy farming family but received nothing except a small settlement in her parents will...all because she was a girl and her husband was meant to take care of her.

My grandfather died penniless in a home (which was paid for by his brother) when I was 19. Standing over him in the final hours of his life, I felt nothing more than pity for him. I was more heartbroken by my Mom begging him to stay so she could spend more time with him. That was so awful. My beloved great- uncle died two months before I left for England. He had suffered a massive stroke the year before his death that left him a total invalid, unable to speak. Our family had raced across the country when that happened. I sat with him in the hospital throughout the night squeezing his hand and stroking his face trying to get my brain accept that my uncle, with his twinkling eyes, larger than life personality and booming voice was the same frail man that lay expressionless in that bed. It was a great day for him when he died. He loved God more than anything else on this earth and longed for the day when he could finally meet his maker.

My great- uncle had made a great success of the farm he inherited and it has now been passed onto his sons, one of which is my godfather. My grandmother's younger brother drank his farm and his money away. He died of cancer when I was 8. So my grandmother is the last one left. The last one from the glory days.

So in other words my poor grandmother is broke and even though she worked so hard. We could not afford to put her in a nice home or one that was even close buy. The home she is in now is very basic but comfortable for the price. But it is two hours away and my mother will only be able to see her once a month. My Mom has lived with my grandmother for most of her life except for her university years and the first 3 years she was married to my Dad.

It has been a mad dash to get my Grandmother ready. You will not believe how much stuff you need to buy to get someone ready for going into an old- age home. The night before she left I was in the kitchen chopping vegetables for a stir fry and I was listening to my Mother talk to my Grandmother about the home, how many friends she would make, how the nurses were going to spoil her and how good the food was. My Mom washed her hair, cut her nails and was rubbing cream on her hands. My grandmother kept thanking her. The stir fry was not quiet working out the way I wanted ( I added to many damn noodles!) and then it hit me. My grandmother has been alive the whole time I have been alive, she was there for everything and I mean everything. Years and years of everything was going to end with a stir fry?. This mostly likely was going to be her last meal with us. This was probably the last supper I would make for her.

We are took my Grandmother to that home for her die. Her road on this earth will end there. And while she may change homes or come for visits, you know what I mean. A page has been turned and we are now facing the final chapter. The landscape of our family will never be the same. And with the stir fry thought came the cold realisation. I will never hear my Grandmother call my name again, she will never make me another cup of tea, her stories have now gone.

I'm still angry as hell but I don't hate her anymore and I don't want to be angry either. But I guess the reason why I am afraid to let go of that anger is because behind all that rage there is a heart wrenching sadness and a tunnel of endless regret. I have racked my brain trying identify those times when we may have had a second chance for a good relationship. Maybe everyday was a second chance, maybe we were never meant to be. The irony is that if my grandmother had not had Alzheimer's we might have been very good friends.

On that last night, after everyone had gone to bed I went into her room to fetch Milo, who for some reason had taken to curling on my Grandmother's bed after she went to sleep. And there she lay tiny and fragile, a ghost of her former self. For some reason I thought about one Christmas when my Mom, sister and I were struggling to drag our potted Christmas tree into the house on a mat. My grandmother pushed us aside, took hold of the mat and dragged the whole thing in by herself quickly and with such apparent ease that all three of us were embarrassed by being shown up by a seventy- something woman. There are a lot of things I want to change about the past but none of that matters now. Saying "I love you" just felt to weird but I whispered to her how sorry I was. She didn't hear me of course. They say that the bitterest tears shed over a grave are for words left unsaid. I took Milo and left.

The next day she was gone, I stood in her room. Her bed was stripped and all her belongings were gone. Photographs of her now seem ancient, moments frozen in time. I am now part of her legacy. I hope and pray that I will learn from her mistakes and live my life well.

Friday, June 17, 2011

From the dark side: The damage that haterd can do...Part 7

Penultimate

In September last year, just a few days after my birthday, my Grandmother took a tumble down a step (that was only about 2 inches high) and broke her hip. We had been forced to moved to a new house as the farm my parents had lived on for the past seven years was sold. The move sent my grandmother in a continuous downward spiral and we thought things couldn't get any worse...until that fall. After that life became unbearable for all of us.

She had to have surgery and was in hospital for a month. Our entire family and extended family took turns in sitting with her in hospital to comfort her and remind her every few minutes where she was, what had happened and prevent her from trying to get up or pulling her catheter out. I sat staring at her not being
able to offer any words of support other than the stereotypical cheesy stuff when it was absolutely necessary. My Mom was unhappy with the care she was receiving at the hospital and brought her home early. That day was one of the worst days of my life. It was just me and Georgina and the amount of care my grandmother needed was overwhelming.

That fall shot any sanity my grandmother had left. When she came home from the hospital we had to put her in nappies/ diapers because she was incontinent. Her vocabulary were severely compromised but that didn't stop her talking in a continuous monotonous voice from the moment she woke up until she went to bed. The only talking she ever did was in the form of some very weird prayers or calling my mother. That was on a good day on a bad day she would shout and scream continuously. The talking alone drove us up the wall. Even though her leg healed very well, Alzheimer's had started to claim her motor skills and she was confined to a wheelchair, only being able to walk very short distances with a walker. She screamed every time we moved the wheelchair and taking her in the car was impossible because it was "To fast" and she was afraid we were going to crash.

My Grandmother never slept. She had no concept of time or of night or day. My Mom had to eventually start sleeping with her because she was so terrified of being alone and would try to get out of bed. She had several panic attacks a day but my Mom was hesitant about putting her on medication because she didn't want her to get addicted. Though, I understand where my poor Mom was coming from the whole thing was absolutely ridiculous. Eventually one night after I found her in bed choking and hyperventilating which resulted in us having to call an ambulance, my Mom relented and my Grandmother was put on a sleeping pill and sedatives, providing a little relief (and some more sleep) for all of us.

Whether it was because of the drugs or the disease she began having hallucinations. She had entered her own world never to return to the real one. If you told her something that she was seeing wasn't there it was like she either wouldn't hear you or comprehend you and just went on talking about the strange imaginary place she was in. The doctor put her on medicine they use treat people with schizophrenia, which I found odd but it didn't make any difference any way.

She hasn't been as aggressive as most Alzheimer's patients but she has tried to take a few socks and slaps at my Mom. The worst was when I found her trying to strangle Milo- he and jumped in her lap and frightened her, when I walked in I was so horrified I grabbed him away from her and slapped her hand hard. She then told my Dad I had tried to kill her.

Her final obsession was with my Dad. His name was always in her mind and in the last few months she has called for him continuously throughout the day. At first she was convinced he was her husband (something my Dad did not take very kindly). Then to her, everyone she saw was "my Dad" whether or not they were even male or female. The saddest part was when she finally forgot who my Mom was and stopped calling her by her name. I think because she always heard me call my Mother, "Mom", she started to do that too. My Mom would not accept this until the day when my Grandmother was crying and saying over and over again, "Where is my mother?, I want my mother!", my Mom gave in, knelt down next to her and said, "I am your Mother". My Grandmother then cried over and over again, "Oh thank you!, thank you!".

They say that with Alzheimer's patients, the happiest memories go last and this was true for my Grandmother. Her very last memories to go were those of her childhood and when she was at boarding school. My Mom tried to talk to her as much as she could about those days, hoping she would be spared a while long with those happy treasures in her hands. But ultimately, my Grandmother would wake up every morning having lost more of what little memory she had left. And so we watched as every last thread of her life slipped away and she became a stranger to us and us to her.

It is very difficult to convey in words how horrendous the last year has been. Our family, my parents in particular, have faced many trails in their lives but very few of them can compare to this. What we have watched happen is truly frightening. Torture is the best way to describe the emotional impact it has had on us and the toil it has taken on our lives.  Our entire lives revolved around my Grandmother and her care. We had very little freedom. We could never go out as a family and if one of us was out it could only be for a few hours because someone was on duty at home and needed to be relieved. It was worse for my mother- for the past year she has been house bound.

It has had a different impact on me. Of course I was to busy with my damn revenge to notice that someone who loved me my whole life and nurtured me (in her tedious, bossy way), was slipping away. But there were moments when the pain of what was happening would lash at me. Watching Little B running to her Great- Grandmother arms wide open only to get pushed away because she thought Little B was attacking her. And then seeing my Mom cry because she missed her mother so much- she was there but she wasn't at the same time. My Dad used to say that the person we had in our house was no longer my Grandmother and that she had left us some time ago. As harsh as that sounds he was right.

And where did all my hatred get me?. Well it got me nowhere. It was useless. It just made me more miserable and more of a liability to my Mom instead of an asset when she desperately needed help. I felt bitter because I had gotten nowhere. I'm still angry at my Grandmother but how is that benefiting me?. It's funny how human beings see holding on to anger as doing them some sort of justice when they have been scorned. In the end no one cares and it's like going around in a circle.

Thursday, June 16, 2011

From the dark side: The damage that hatred can do....Part 6

I'm not sure when my Grandmother was diagnosed with Alzheimer's. Honestly it feels to me like she has always had it. And living with someone who is afflicted with this condition is heartbreaking as well as being pure hell.

Because of the recession in 2009 I could no longer afford to live and study on my own. I moved out of Cape Town and back in with my parents....and my grandmother. My Mom still had her own business then and would work long hours. My Dad would work from home in an outside office. The care of my grandmother was left up to a lady that my Mom originally hired to do cleaning. She was very good with my grandmother and would cook for her and take care of her during the day while taking care of the house. Soon though my grandmother started to become more and more of a full time job.

We had a cat back then who my grandmother became obsessed with ( a commonality in Alzheimer's patients). If the cat wasn't within her line of vision she would panic, she tried to follow this cat wherever she went (and if you own a cat you know that this is impossible). If the cat did anything like "meow" or role around or ANYTHING she took as a sign that the cat had to be hungry and would get furious at all of us, accusing us of starving the cat. At least once an hour there was a blow up with her about the cat. The worst was when the cat went off somewhere as cats do, my grandmother would leave the house and go and try to find her. My parents lived on an apple farm and this happened several times a day and either Georgina, myself or my Dad would have to go out and frantically look for her. Then she would start accusing any stranger she came across of stealing the cat. And then came the day when she claimed that our cat....was not our cat.

At night her obsession switched to the locking of doors. After she went to bed she never slept as she was up and down all night checking that all the doors were locked. Of course she would always forget that she had already checked and keep on checking all night. Soon she started waking us up at night "Wondering where everybody was". She needed help with dressing, bathing and eventually going to the toilet. She was terrified of being alone and always afraid of some impending doom. She would work herself up into into a crazy state that would always end in her crying hysterically. Her balance was effected and we constantly had to watch her to make sure she didn't harm herself.

And then of course, there was her mental state. It probably sounds petty when I say that her repeating the same thing over and over again or the 50 million questions she would ask...by breakfast, was irritating. But just imagine having to hear the same line over and over and over again knowing that telling them to shut the hell up would have no effect what so ever AND you actually couldn't even get angry because it would agitate their mental state even more?. Well... I'm sure that's how my Mom must have felt. I didn't let it stop me from screaming my lungs out besides, it me feel better. Even if she would be beside herself once I had calmed down.

Throughout all of this I was horrible to her. I hated her. I kept thinking, "After being a constant intrusion in our lives you had to go ahead and become a burden too". I didn't care that she was afraid and confused and suffering. I just cared about venting all the anger I had held inside of me for years.If I wasn't ignoring her, I was yelling at her. I called her a "A demented old cow" and " A senile old woman". I resented her always having to tag along when my Mom and I were out together. My Mom may have been able to control how I spoke to her when I was little but not now. This lead to many fights between my mother and I which of course made me even more angry.

But even through her dementia my Grandmother still managed to retain her good qualities. After any attack I had made on her the disease would have her promptly forget that anything had happened. But the unhappiness remained. She was unhappy and she didn't know why. Knowing my Grandmother she probably thought it was because of something she had done. She would seek me out and want to hug me and love me. This made me feel like the worst person ever born on God's green earth and I would try to get away. My grandmother may not have been able to rescue me from my abuse but she was always there to comfort me. When it was my turn to do the same I failed her I did nothing but make her suffering worse. The full implications of that haven't hit me yet but they will eventually. I will have to deal with what I did for the rest of my life.

STILL more to come....