Hi everyone. I thought i'd seek out to read other people's experiences with this the worst of all diseases and perhaps to come to terms with what my Mother and I (and my extended family) are dealing with.
I know things get easier, particularly after the death of a loved one, but to have the living death, that this disease surely is, continually upset me to point of not wanting to see my Mother at all, I thought last night i'd write something i've been wanting to get off my chest for the last year or two. It's a heavily truncated little story that expresses my sadness and the nightmare and also my lack of knowledge about what may be going on inside my Mother's mind. I know it's likely a jumbled mess of half thoughts, but she's still my Mum at times and that occasionally comes through.
Ok, it's not an enjoyable read at all. Please be warned.
Significant White Matter Loss
I was around 16 years old. I walked into the kitchen of our old asbestos house and my Mum was there. I sat down on the stool near the bench as she was cutting vegetables. She appeared as she always did, a short haired lady preparing the nightly meal. She opened her mouth and a loud nonsensical moan came out. I asked her what she was saying. Same again. I became frightened as she continued the noise.
I woke up in a sweat. I was still a 16 year old and it turned out my Mum was ok.
20 years later the doctor came to my Father and I in the waiting area of the Hospital and informed us that they had done full body scans of my Mum and he was sorry to tell us that she had early signs of dementia. Her left breast had just been removed for cancer and my Father decided that we wouldn't tell her of the dementia so as to not worry her. It was to be 10 years before it was noticeable in her behaviour.
10 years of keeping a secret and always expecting the worst. My Father simply forgot about it as that was how he was. That's how he continued.
Things came crashing down for him at 83 when her dementia became so apparent she nearly set the kitchen alight. He still didn't want to believe or know about her problem. He wanted things to stay as they were. He wanted her to cook for him and my suggestion of getting some help, such as meals on wheels was refused. There was no problem you see. Ignorance is indeed bliss. I know he knew, as she was becoming more and more vague in the things she said.
Soon after, he was in hospital as he wasn't feeling well at all. He told his visiting nurse at home that it's the worst he's ever felt. Like death. His debilitating arthritis made his daily struggle worse and his pride of staying on his feet instead of a gopher worse indeed for me. His driving was becoming dangerous, but there was no telling him. The very idea of me making sure he couldn't place others in danger by cancelling his drivers license made him see me as the enemy. His mind was fine for an 83 year old, his body was not.
My Mum and I visited him in hospital daily. I think I didn't want to believe she couldn't take care of herself either. I didn't want any of this to affect my life. I came to pick her up this one day and she was asleep on the couch. I woke her and sat down on the adjacent rocker. I asked her if she was ready to go.
A loud nonsensical moan came from her lips. I cried right there in front of her as she looked puzzled and frustrated at herself.
My mum tried to find the words so hard. They eventually came well enough to tell me about the groups of people milling around outside the house all day. The disco outside. The flashing lights. The people waiting in my fathers car. The woman in white standing in the hallway. There was no one there. Not anywhere.
I'd finally realised she couldn't stay alone.
My father died 2 days later. Leukaemia. He tried so hard to convince the doctors to let him go home to die. For another week of normality. It couldn't happen. He was in pain. So much pain, a feeling of death, I asked the doctor to dose him with morphine for his remaining days. He didn't last long after that, in fact I wondered whether my decision cut short our remaining time with him.
My Mum is in a home now. The antipsychotics helped her but she can't be spoken to. She rarely makes any sense except to say she wants to leave her prison and go home.
There is no home to go back to.
"Take me with you" she says.
"I can't Mum, I'm sorry. See you next time ay"
She can't hear me. I shake my head. If only she wasn't deaf as well.
Her scowl cuts me deep every time. I don't want to go back.
At 48 I sleep more often now, I wonder if it's to simply move things along.
I know things get easier, particularly after the death of a loved one, but to have the living death, that this disease surely is, continually upset me to point of not wanting to see my Mother at all, I thought last night i'd write something i've been wanting to get off my chest for the last year or two. It's a heavily truncated little story that expresses my sadness and the nightmare and also my lack of knowledge about what may be going on inside my Mother's mind. I know it's likely a jumbled mess of half thoughts, but she's still my Mum at times and that occasionally comes through.
Ok, it's not an enjoyable read at all. Please be warned.
Significant White Matter Loss
I was around 16 years old. I walked into the kitchen of our old asbestos house and my Mum was there. I sat down on the stool near the bench as she was cutting vegetables. She appeared as she always did, a short haired lady preparing the nightly meal. She opened her mouth and a loud nonsensical moan came out. I asked her what she was saying. Same again. I became frightened as she continued the noise.
I woke up in a sweat. I was still a 16 year old and it turned out my Mum was ok.
20 years later the doctor came to my Father and I in the waiting area of the Hospital and informed us that they had done full body scans of my Mum and he was sorry to tell us that she had early signs of dementia. Her left breast had just been removed for cancer and my Father decided that we wouldn't tell her of the dementia so as to not worry her. It was to be 10 years before it was noticeable in her behaviour.
10 years of keeping a secret and always expecting the worst. My Father simply forgot about it as that was how he was. That's how he continued.
Things came crashing down for him at 83 when her dementia became so apparent she nearly set the kitchen alight. He still didn't want to believe or know about her problem. He wanted things to stay as they were. He wanted her to cook for him and my suggestion of getting some help, such as meals on wheels was refused. There was no problem you see. Ignorance is indeed bliss. I know he knew, as she was becoming more and more vague in the things she said.
Soon after, he was in hospital as he wasn't feeling well at all. He told his visiting nurse at home that it's the worst he's ever felt. Like death. His debilitating arthritis made his daily struggle worse and his pride of staying on his feet instead of a gopher worse indeed for me. His driving was becoming dangerous, but there was no telling him. The very idea of me making sure he couldn't place others in danger by cancelling his drivers license made him see me as the enemy. His mind was fine for an 83 year old, his body was not.
My Mum and I visited him in hospital daily. I think I didn't want to believe she couldn't take care of herself either. I didn't want any of this to affect my life. I came to pick her up this one day and she was asleep on the couch. I woke her and sat down on the adjacent rocker. I asked her if she was ready to go.
A loud nonsensical moan came from her lips. I cried right there in front of her as she looked puzzled and frustrated at herself.
My mum tried to find the words so hard. They eventually came well enough to tell me about the groups of people milling around outside the house all day. The disco outside. The flashing lights. The people waiting in my fathers car. The woman in white standing in the hallway. There was no one there. Not anywhere.
I'd finally realised she couldn't stay alone.
My father died 2 days later. Leukaemia. He tried so hard to convince the doctors to let him go home to die. For another week of normality. It couldn't happen. He was in pain. So much pain, a feeling of death, I asked the doctor to dose him with morphine for his remaining days. He didn't last long after that, in fact I wondered whether my decision cut short our remaining time with him.
My Mum is in a home now. The antipsychotics helped her but she can't be spoken to. She rarely makes any sense except to say she wants to leave her prison and go home.
There is no home to go back to.
"Take me with you" she says.
"I can't Mum, I'm sorry. See you next time ay"
She can't hear me. I shake my head. If only she wasn't deaf as well.
Her scowl cuts me deep every time. I don't want to go back.
At 48 I sleep more often now, I wonder if it's to simply move things along.
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