It started when my grandfather lost his job as a minister at our small Anglican church. I was still quite young at this point and didn't really understand what was going on; all I knew is that grampie wasn't working any more and for some reason it was very awkward. (I think it's regarded as pretty disgraceful to be fired from a religious position.) My mom stopped going to that church for a while, while my grandmother straightened her back and started making phone calls to protect his pension. She had no income of her own and they relied heavily on him working.

Grampie went to the doctor.

Grampie was submitted to some new drug trials.

Grampie was diagnosed with a dementia-spectrum degenerative disorder.

For a while things were steady. Grampie spent most of his time reading in his study, or pecking away at his keyboard. Grammie resumed her normal activities: cooking, cleaning, planning church events. Grampie was never the type of man to help around the house, so life was normal for a bit. Just that he didn't give any sermons any more.

He very, very slowly got worse.

I was at university by this time, so I don't know exactly how it progressed, but grampie's memory got worse and worse. He stopped being able to do simple things to take care of himself - he could no longer be trusted to work the microwave, and his daily walks around the neighbourhood were sometimes alarmingly long. He could no longer drive. He started wandering, pacing from room to room trying to remember where something was, and eventually, trying to remember what he was looking for.

And then it got worse at a faster rate.

I'd come home for a weekend every few months and have dinner with my grandparents and family. "Do you notice a difference?" mom would ask every time. "I think so, but it's hard to tell when he doesn't talk as much," I'd say. He still remembered me (probably because of careful coaching). I'd watch him trying to figure out how to eat. It was painful to see him not remember what to do with the butter, or forget how to cut meat. His motor functions were deteriorating. He would still laugh at jokes, though.

And then he stopped laughing at jokes. He stopped being able to "get" them. He got more and more frustrated and angry. You could tell he knew what was happening - that he was losing his memory, that he was losing his brain. He would get angry when he became confused, raising his voice when he said "I don't know. I don't know!" He stopped going on his walks - he couldn't be trusted to find his way back home. He stopped being able to read. He would watch TV, but not understand it. On bad days, he wouldn't be able to figure out how to sit in a chair. He couldn't dress himself. He had trouble sleeping. It was scary to be in a house with someone who was always frustrated and pacing from room to room.

The medication does nothing to help - well, the sleeping medication helped keep him calm. But there is no treatment for Alzheimer's. There is no way of slowing the process, or stopping it, or reversing it. Once you are diagnosed with Alzheimer's, there is one outcome.

He was very, very unhappy, and so was our family. Grammie could no longer leave him to do errands - he started going to an adult day care centre, and she hired someone to come in and watch him while she went to do errands, or church events. He seemed to like the day care centre: they kept the seniors well-entertained.

My family treats it like an awkward joke. That frustrates me the most. My grandmother seemed convinced that he was exaggerating, that he was faking it. On a bad day, she would whisper, "He just doesn't try. He refuses to do anything he doesn't want to do. He won't let me distract him when he gets in those moods." The overwhelming feeling I get from her is that he's doing this just to spite her. When my mother talks about him, she has a half-smile on her face. I don't know what that means, but it makes me angry. "HIS FUCKING BRAIN IS ROTTING WHILE HE'S ALIVE!" I want to scream at them. "JESUS FUCKING CHRIST!"

I don't really blame my grandmother. It was not a happy marriage she'd had. He was a very "traditional" man, controlling, selfish. She was forced into a "traditional" housewife role, with few hobbies (they couldn't afford much) and two generations of children to raise (her own children, and then me). I overheard her talking to my mother once. She almost left him, very early on, but she decided to stay when "god told her to."

Fuck god. The thought of my grandmother being unhappily married to my grandfather for all those years just...

My grandmother emailed the family in early July to tell us he was finally hospitalized. He can no longer reliably control himself, and had been having hallucinations,

Lately he has been complaining of not being able to see, not being able to move his arms and legs, shaking of the arms, and weakness. For all of these things I have either taken him to emerg or the doctor. He has episodes where he talks and laughs to himself as well as to someone he sees on the ceiling of his study. He also has times when I'll hear a thump and find him on his hands and knees in front of his chair as he can't seem to get the hang of sitting back in his chair and goes forward instead- hence landing on the floor.

but the final straw was an act of aggression when he threw a steak knife at a family friend because he was frustrated that he couldn't cut his steak with a spoon.

He doesn't watch TV in the hospital because he doesn't like the headphones. He can't use the toilet without help, because he will make a mess on the floor and get his clothes wet. His hallucinations are getting worse - in a bad week, he sees a man with a chainsaw who cuts people up. "You're dead. He cut you up," he says to a family friend, "And he's coming for [my grandmother] next."

We visited him this weekend when I went home. Grammie brought him to sit on a bench outside, so the younger kids wouldn't have to go into the neurological unit at the hospital. This was the first time I've seen him where he very clearly didn't know who I was. "God bless you!" he said when I hugged him. But he didn't know who I was.

The sun shined on a glass-fronted poster, and the reflection caught his eye. He smiled and chuckled and reached out his hand to try to grab the light. He started waving at the spot of light and it captured all of his attention.

There is no where for him to go but down. There is no cure for Alzheimer's, there is no treatment to slow the progression.

On the positive side, now my grandmother is finally free. She has always loved travelling, and she has children in a neighbouring province and also on the west coast, in Seattle. She really likes Seattle. Now that she can travel alone, she has many trips planned. She's still quite young - somewhere around sixty years old - and she's just got a second lease on life. She spends Thursdays and Fridays baking hundreds of cookies and treats to sell at the farmer's market. She has the whole family over once or twice a week for supper. She can have young children visit without fearing that my grandfather would have an episode. She's not caregiver to someone who only repays her patience with frustration, anger and (sometimes) violence.

I've never seen her this happy, and it makes me happy to see her enjoying life. She is more of a mother to me than my actual mother, so I am very glad that she has freedom again. I just wish it could have come another way... while my grandfather and I were never close, and while I know he wasn't very loving to my grandmother, I wouldn't wish this horrible disease on anyone.

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  1. This is really heartfelt, especially since I am currently watching my own grandfather deteriorate to both Parkinson's and Alzheimer's.

  2. Odd that Parkinson's often comes at the same time as Alzheimer's. It's a really rough situation, knowing that there will never be improvement... having to watch someone deteriorate in that way. It's hard and I was never particularly close with my grandfather, I can't begin to imagine how it would be to watch a close loved one.

  3. :( sorry to hear about this. it really affects the family so harshly. it's hard. i'm just glad your g'ma is happy and enjoying her life.

    we need to be grateful for living and really live our lives as best we can.

  4. My grandmother on my father's side had Alzheimer's. By the time she died she had no idea whatsoever who I was.

    (I guess that's not all bad though; as far as I know, there is nothing medically wrong with my Mother's brain but she doesn't have a clue as to who I am either. :-) )

    My father was a minister in the Covenant church until shortly after his divorce from my mother. You're right: there is something disgraceful about being forced to leave something like that. On the plus side however, one's social obligations are reduced markedly.

    I wonder if Alzheimer's is hereditary. (?)

  5. Oh wait!... I was also going to mention this:

    I was off at school when my grandmother's health deteriorated most quickly. When I was home to visit my father on holidays (he was remarried and he/his family was taking care of my grandmother) I remember being very irritated at the way my dad's wife and her kids made fun of her.

    I cut them slack because they had to live with her though.

    Still, I can't help but be frustrated with the lack of empathy they seemed to have for what must have been a very miserable existence for grandma.

  6. I worked in a Nursing Home for a few years and Alzheimer's really is a difficult disease to manage, particularly for the family. So many patients are eventually abandoned by their loved ones because family members feel as though there's no point in visiting if they're no longer even recognised. It's a very sad situation for all concerned. As nurses we're trained to step inside their reality which is quite a challenge.

    Such a moving post. I wish you and your family all the best. :)

  7. A: It definitely is a small silver lining. It's so, so nice to see her being able to enjoy herself again. Being a caretaker is so stressful...

    Stu: Alzheimer's - especially early-onset (which I believe he technically has) is hereditary... at least, you have in increased risk. I get the impression that, like cancer, they don't know for sure what causes it - just what can contribute.

    It seems like that's a common reaction: people teasing or making fun of people with dementia. I suppose kindness and patience can only be stretched so far, hmm? The hardest part for me was seeing my grandfather take out his frustration on my grandmother; I suppose being condescending is a response to the misdirected anger. That anger - and often violence - is very common in dementia patients.

    Vee: I can imagine. It's hard to talk to and care about someone who... well, they aren't themselves any more. They really only share their body; the mind is no longer there. I think I'm comfortable saying it's the worst thing that can happen to a person...

    Thank you all for your kind words. <3

  8. that must have been/be so hard on your whole family; not only to watch your grandpa go through it but to watch each other suffer because of it as well.

    I almost feel guilty for saying this, but... I'm really excited for your grandma. She's got so much life ahead of her now!

    hugs <3

  9. It's pretty hard, but like Vee said, I think distancing yourself from the person is a very common coping tactic.

    I almost feel bad about it too, but I've also very happy for her. She's so excited to travel again!

  10. Ugh. That's such a hard road. I have a few friends who've walked it. (You have just been sent my good thoughts.) You have quite a way with words.

  11. It's incredibly difficult. I'm still struggling with the same things - It drives me crazy when my mother kind of acts like it's funny. And, like most people, I don't like hospitals and being around someone who doesn't recognize me is kind of freaking me out, so my instinct is to avoid visiting...

    It's unbelievable how fast it progresses.


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