Life with Alzheimer's Disease.

I wanted to blog about something cheerful. For days I have been opening this page, willing the cheerful, fluffy thoughts to spill onto this page, fluidly, easily.

Instead I opened this page 4 times, 5 times...days of nothingness. Sat here and nothing came out. So I closed it again. Blogger's block.

I thought I could do it tonight. I don't feel bad. I feel tense, stressed, sad even a fair bit granted. But I don't feel bad. Feelings of small happiness, sunny contentedness seep in sometimes. I have happy things I could tell you about. Like my son winning an award at school for being a helpful caring student, or my daughter's growing love of drawing and her lyrical drawings, bursting at the seems with story lines involving her precious "Princess Beanie" beanie kid's marvellous adventures.

But no. Instead I am compelled to blog about my dad, and the saddest thing that can happen to a person of high intelligence, a PhD scientist, as he once was. That is, to lose your mental faculties slowly, and irreversibly. To fall victim to a disease that is slowly eroding his sense of self, his surety in the world and his place in it, and leaving him feeling scared, alone, defensive, paranoid, often aggressive to his loved ones and devoid of any real friends. It's too scary, too sad, too annoying for them. The disease is Alzheimer's and it's a slow death sentence. I have not relaly done so, and though in a way it feels like a betrayal, I feel like it's important to share it.

Dad is 91. Yes 91. I know this may come as a shock. I see you mentally calculating how old I must be to have a 91 year old father. I am 37 and he was 54 when I was born.Yes life with a father that old had its challenges, but this post isn't about that. It's about right now. He was at least spared the tragedy of early onset Alzheimer's, a tragic affliction in which Alzheimer's symptoms are diagnosed in people under the age of 65, (sometimes as young as 30 or 40, although this is extremely rare). He is in anyone's book, rather ancient. He has lived his life, and in many ways lived a full & rewarding one. He would not(and some, myself included would argue should not) be alive right now I believe, were it not for the interventions of modern medicine, which ensure his heart condition is treatable with a pacemaker and drugs, his blood pressure is treated with drugs and even his mental state is held in some kind of stasis with drugs that slow down the memory loss process, marginally-yet enough to ensure he is kept in limbo. He has some moments of clarity, in which he knows who he is, knows who we are, knows where he is, and knows what his past involved. More and more these are disappearing-or even more frighteningly, they appear intermittently, and so briefly that he is left in a permanent state of confusion, fright, anger and despair.

This is no life for anyone. Why is he still alive? I believe because modern medicine deems it has a duty to treat any condition where drugs and processes exist to do so-whether or not that keeping someone alive actually benefits the patient, and the people who care for him or her is somewhat more debatable.

To illustrate what life is like for my parents right now, here is an example of a day with my dad.

7 -8 am. Wakes up, often confused. He's spent most of the night getting up, wandering around, looking for lost items, trying to orient himself. He has no idea where he is. Asks wife where he's come from. Surely he didn't sleep here all night? Hadn't they been somewhere? Any anyway, where are his parents? He's missing them, they should be here by now...

Wife replies they have been here all night, and his parents have been dead for 30 years.

My father slaps his forehead and sighs in exasperation. Of course his parents are dead. What was he thinking? Sometimes he doesn't seem to think much at all these days! It's terribly confusing. Yes his parents are dead. Better get out of bed.

2 minutes later. Asks wife when they are going home, and are his parents going to accompany them?

Repeat roughly every 2-10 minutes for the next 2 hours, in between bouts of nausea, moments of frustration because his wife for some reason refuses to spend every waking moment sitting down and talking to him, trying to eat but being unable to, being unable to do his own shoes up, having to wear incontinence pads. Being a proud man, this is terribly humiliating-all of it. He feels angry and let down by his body.

But where are his parents? He feels like he hasn't seen them for at least a day. And what's more worrying is that he isn't sure their financial affairs have been settled correctly. Must ask wife. Why is wife acting frustrated? I mean he's only asking a question?

Lunch time. Makes a shuffling trip out to letterbox. This may be the only time he leaves the confines off the house all day, unless its the day they go shopping, or the day they go to the library, or the doctors. People always say his wife 'takes' him places. he cant stand this! She does NOT take him! They GO TOGETHER! Just because he cant drive does not make him an imbecile. He fumes. Retrieves mail from the letterbox, and returns to the house. Opens mail.

What is this addressed to him & his wife, sent by XXX Accounting? He doesn't understand it. Asks wife. Repeats 10 + times in space of 30 minutes. Gets increasingly agitated. He HAS A RIGHT TO KNOW THESE THINGS!! he yells at her. Surely she understands this. Why doesn't anyone EVER tell him ANYTHING!! He yells. Over and over. Wife is close to nervous breakdown but he doesn't know this. Even if he knew, in 5 minutes it would be forgotten.

Wife knows an aged care facility is an option. Everyone tells her. But he would refuse to go. The alternative, that of involuntarily committing him is unthinkable. How could she do that to the man to whom she has been married, and cared for, loved, for over 40 years? She could not. It would be a betrayal. Oh but she would be free...so free... NO! She can't think that. Surely a merciful death will take him soon? This her husband she loved, and has already grieved for...sad. So much sadness.

1.00 PM. Wife escapes house for much needed respite. Daughter arrives to provide said respite. For some reason some strangers come every now and then, but he doesn't like that. Why do they come? Do they think he's stupid? He is NOT! It makes him VERY ANGRY that people treat him like an idiot all the time. He is NOT an idiot and is NOT DEAF! Why do people yell so much?

Asks daughter to repeat herself incessantly because he cannot hear her properly. She is talking to someone else, and he cannot understand. She must be plotting against him!! Demands to know why he is NEVER TOLD ANYTHING?! Repeats 3 or 4 times. Sulks. Retreats behind newspaper. Young people these days have no respect. Falls asleep.

Wakes up, Asks daughter where J is. Daughter says she is J. No, J is a little girl! Where is that girl. Oh no NOT J, its S. S is the little girl. Slaps forehead in exasperation. Why cannot he remember?!! He is FAILING!! He is losing HIS MIND!! Breathes. Freaks out. Repeats question a minute later. Asks daughter 10 times what she is doing on her laptop computer. What a strange contraption. What is it anyway, a ridiculously sized calculator? Asks daughter what she does on it. She replies she is designing something, some magazine whatsit. What the hell is she talking about, how do you do that on an adding machine? She must be doing sums. Ask her this. Wonder why she seems to be ignoring him. Ask again. Daughter gives similar gobbledygook reply. How absurd. Get annoyed at daughter and inform her if she refuses to tell him, well she can just bugger off. How dare she treat him with such disrespect?!! Get mad. Fume. Get sad. Despair.

Despair. Utter, dark, desolate despair. Why has his life come to this? He shouldn't be alive any more. Suicidal thoughts.Why am I here? What is God's purpose. WHY?

5 minutes later. Asks daughter what the weather is like outside. it looks like such a lovely day! Does she have any shopping too do? He likes shopping! lets go shopping!!

Luckily daughter has shopping to do. How fortunate. Oh happy day! Gets coat and walking stick.

Driving in daughter's car. Wonders where the hell they are? Are we still in Melbourne? Where are you taking me? I don't recognise any of these roads. No, cannot believe daughter when she says this is the neighbourhood in which he's lived for 40 odd years. No way. Not correct. people have no idea. Does not recognise shops, even though daughter says he comes here weekly, sometimes more. She is surely deluded.

Pick up grandchildren from school. He thinks they're his grandchildren. he cant really be sure. L and S...that's right. Maybe they're his niece and nephews? Or cousins. Don't know. Where are his parents? They would know!! Where are his parents actually? He hasn't seen them for a few hours at least. Arrives back at familiar yet odd looking house. is this a holiday house? Maybe a hotel? Not sure. Asks daughter. She says he lives here. NO that is INCORRECT! He does NOT live here, he is merely staying here. Asks wife where they will spend the night. She says 'here'. Why here, why do we always come to this place? I hate this place! It's like a prison. I cant escape. Why doesn't anyone ever tell him anything? Informs them he is SICK and tired of being treated like the imbecile in the corner and demands, DEMANDS some respect. Wonders why wife is cross at him. HE is entitled to be treated like a human not to be constantly ignored or plotted against. Wife is threatening to leave. Says she cannot take any more. Any more what? What is her problem, he's only asking a question! Jeez. Just like that arrogant doctor who was asking him questions so condescendingly. What year is it? Its 1970 of course! What day? I don't know, what's it to you? Yes I know my grandchildren's names but I'm not telling YOU bossyboots doctor! If you don't like that you can stick it in your pipe and smoke it. Huh! I showed her!

Where are his parents anyway?

Gets sick of those damn kids' incessant noise and shuts self in separate room. Sulks. Wishes daughter and her annoying brats would go home.

Daughter is leaving. This makes him sad. Why is she leaving? When is he seeing her again. Two whole days?! Why cannot she be bothered visiting him sooner than that? Very sad lovely kids are going. Such a dear boy and girl. Is sad.

Later on, goes to bed. Is this his house? No it cannot be, he knows he lives somewhere else. Maybe somewhere from a long time ago, he doesn't know. Where are his parents?

............

This man was once a PhD physicist, wrote a thesis or 3 on metallurgy, led expeditions to the South Pole, advised Prime Ministers and worked in aeronautical research in the USA, worked with NASA. Now he is a shell, a very shadow of his former self. If the real man could see himself now, he would not wish himself here. He would not wish the sadness and utter mental fatigue his wife experiences every day. He does not remember the times he lashes out at his loved ones, verbally, and even these days physically. He would not believe it.

Why is he here?

Because there are drugs, and they can be administered, so they shall be administered. No matter the cost. Either that, or the God in which he does still believe has a very twisted sense of humour.