Living with dementia (luckilly there’s a funny side too!)

September 23, 2009 in Sonder kategorie

As you may know, my 83-year old dad lives with me since October last year. (My mother died a few months before.) Before her death, she often expressed her worries over my dad’s failing memory since a stroke 6 years ago. We always laughed at the funny things, but NEVER realised how traumatic it must have been for her to see him deteriorate like this in front of her very own eyes.

Now I’m the one in her shoes. Since the stroke 6 years ago, a few other things added to his problems (head injuries in car accident, another minor stroke a few weeks after he moved in with me), and a CT-scan a year ago confirmed that his arteries are busy calcifying in the brain. I was also unaware that he apparently had been formally diagnosed with Parkinsons, since my mother never told us or simply didn’t know why he had to take certain medication. To add insult to injury, he also has prostate cancer. But otherwise (and I’m not flippant) he is fit as a fiddle. Although he shuffles along with help, he still insists on walking a bit. He still eats well, and hasn’t even had a cold this winter.

But seeing him fumbling for the right words, or saying something completely inappropriate, is sometimes very sad. And a tad scary. This is not how I want to remember my dad, but as he lives under my roof, it’s part of my life daily. I hardly ever get called by my own name. I am more often than not my sister, and sometimes I am my mom.

But before we all sign a suicide pact, let me tell you about the funnier moments:

* When my mom was still alive, he shot straight up in bed one night, switched the bedlight on and shook her: “Do you play cricket?” he wanted to know from the bewildered woman.

* On our last family holiday together, he sternly reprimanded us for leaving on the stereo in the lounge. “This little voice in the box is still talking!”

* Before I had help for him, I had to put him in bed at night. Which meant, amongst other things, brushing his false teeth. Which I HATE more than anything. So, I quickly handed him the teeth after cleaning it, and busied myself with tucking him in. When I looked up, there he was lying with a VERY lopsided look. Teeth in completely the wrong way, upside down AND front to back, completely unable to utter a word. Or to fix it himself. He just pointed at his mouth. When it was fixed, be both started laughing hysterically. (Sometimes it’s either that or crying your eyes out, which I often do.)

* He wants to get up and “go to work” at odd times, sometimes at 02h00 in the morning. Then the night-helper, who sits next to his bed for exactly these moments, and to help him use the toilet at night, has to do some talking to keep him in bed. One night she called me, at wit’s end, because Oupa wants to get up. I waltz in, completely sleepdrunk and not knowing if I’m coming or going, just to be told that he has to get up. NOW! To attend to “all these people sitting here waiting for him”. (He was a station master, and later on a goods- and passengers-superintendent for the Railways, and often had to deal with irate customers.) Used to this by now, I tell him that I’ll deal with them, and that he can sleep. But I was puzzled to know who he “saw” in his room. Was it perhaps my mom? Or other people he knew? So, the next morning I ask him who visited him during the night. Of course he had NO idea what I was talking about. He listened to my explanation, and then simply said: “Sulke helle! (Such bastards!)” 

* He went on and on for two days about his dynamite book. As in the stuff that you use to blow things up with. I was at wits end, because he never had an interest in things like this. So, nada dynamite book that I could think of. When I told him there was no such book, he got VERY mad and said that he “wrote the damn book himself!” (My brother and I now jokingly say that the reason why SA Railway Services held him in such high regard all his life, is that he would blast anything out of the way that didn’t belong on his station.)

* One day I got home to find the day helper almost white from stress. She had to look for Oupa’s dreaded dentures (something that NEVER leaves his mouth, apart from when being cleaned). He insisted that she never gave it back to him after cleaning, and she spent more than an hour looking for it everywhere: dirty laundry, dustbin, under his bed, everywhere. Only to find it in his mouth after she eventually persuaded him to open wide…

* He taught us to have respect for our fellow humans, and to treat everybody with respect. I seldom heard the k-word out of his mouth during all my 40 years as his child, not even when it was fashionable to talk like that. And of course I don’t use the word myself, and my kids never hear it in my household. But, with the failing mind, something deep within remembers that word, and when he use it to refer to his helpers, I reprimand it. (Although they are VERY gracious about this, and accept it as part of his dementia.) So, one day, after saying it twice in about 10 minutes, I reprimanded him. “My kind, ek gebruik SELDE daai woord. BITTER, BITTER selde!” he said. ( My child, I hardly EVER use that word, EVER.)

* He retired 20 years ago, and officially announced it recently, when the helper wanted to give him his early morning coffee. I heard the goings on of an argument, and went into his room. “Tell this woman that I DON’T have to get up, because I am NOT going to work today,” he said with a very smug look on his face.

( I was awarded with an Caxton Excellence Award recently for writing an article on suddenly becoming a parent’s caretaker. Getting the recognition for that made my load a bit more bearable. As I say, I do it with helpers. I take my hat off to all of you out there who look after your elderly parents, disabled children or spouses or terminally ill loved ones all by yourself. This one’s for you! Let me know if I should post the article.)

8 antwoorde op Living with dementia (luckilly there’s a funny side too!)

  1. Thankyouflippingmuch!! (Fortunately there are good moments too. And after a year out-in-the-dessert-far-away-from blogland, now I have you lot again. Keeps me from going insane!!)

  2. omw reading this is like experienceing things my father does as well. He is 85, and also talks about the oddest things, that have no bearing on anything we have been discussing. He one night woke up shouting for me to come and rescue him from some big blonde women that was trying to (and these are his words) f&&k him silly!!!. I unfortunately get so frustrated with him sometimes as I do not have the patience that I should. I just keep thinking of him as this man 20 years ago, when he still played tennis, and now he too shuffles along and sometimes makes no sense at all 🙁

  3. Oi Blanket, it’s tough. Like I say, I have help, and sometimes it drives me nuts. All I can say, is that at least we make a difference in their lives, even though we don’t always see it. Deep, deep down, I know he at least recognises me as family, and that that does give him a little bit of security in (what must be to him) a VERY confusing world. Can you imagine being living like this? In a way being so utterly confused is also a blessing, I guess. STRONGS, MY FRIEND!

  4. hutton het gesê op September 23, 2009

    The most difficult thing in the world to be going through. Been there, done it twice. Hugs

  5. Thanks! I need it, some days more than others, especially since I’m a single parent and sole breadwinner. Luckilly my dad has made ample financial provison for his retirement, so we can afford help for him. Without them, I would have run away LONG ago!! Sleep well!

  6. Thanks Celia! Sleep tight!

  7. hey you, check your inbox

  8. YOu have to keep looking for it, believe me! But I also believe God won’t give you more than you can handle, and there are HEAPS of people worse off than poor old me.

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