So, dad has had a cold. And I don't mind upping up my visits to see him. Being sick with an underlying illness isn't cool at all. He was a bit freaked out, so I didn't mind extra visits to reassure him. Not to go into the details, will save him a bit of dignity, but there was one day in particular I was glad I visited when I did. That may sound dramatic... but sometimes I feel like I am living in the middle of a drama!
With all this going on, I was not very happy to receive a phone call this morning saying that dad had attempted an escape out of the bed late last night. Again. (And again... if I had a dollar for every time I received on of these calls...) He wasn't injured, but they were just passing the message on. I said I would be by later on to visit, and see if we couldn't come to some sort of solution re: the End of the Bed Heroics (their words, not mine). If I didn't find out upon arrival, that the man had actually, well, um... disconnected and dismantled the week before, the very alarm meant to alert the staff to bed escapees. (There's a gap in the rails at the end of the bed that he has somehow remembered, as opposed to the call button which he should use. Maybe should put that at the end of the bed.) Sounds like a sophisticated jail break to me.
To be honest, I may be joking about it, but I am not really laughing about it yet. "Determined, cheeky, naughty, strong, no one here quite like him"... were some of the words used to describe dad today. I may not have kids, but I have a feeling I know what it's like to get called in to the Principal's office. Have to say... am a bit over Parkinson's today. I imagine dad is too.
Despite the nocturnal illegal activities, dad seemed sparkier and more with it today. He may just have this cold beat.
Off to practice my deep breathing exercises.
Monday, April 15, 2013
Thursday, April 11, 2013
World Parkinson's Day
April 11 is World Parkinson's Day... the birth date of James Parkinson, the English doctor who first published his findings on Parkinson's disease back in the early 1800s. The Shake It Up Foundation has a byline that says "More than just the shakes". Indeed, it is more than just the shakes. Indeed, dad does not have any shaking at all. Someone once said to me, "Your dad has Parkinson's? But he doesn't shake." No, he doesn't... Parkinson's is more than a shaking body.
Among dad's initial symptoms were: Bradykinesia (slowness of movement), which affects the fine motor skills and makes simple tasks like getting dressed a major undertaking, The "Parkinson's mask" (stiff face), stooped posture, small handwriting, depression, worrying.
Then it moved into: cognition, behavior, rapid, shuffling steps. It was towards the end of this cycle, we noticed the worrying new symptoms of memory loss and hallucinations. Our observations were confirmed with the diagnose of Parkinson's related Lewy Body Dementia. Shortly after this, he started having falls, where we were informed that Parkinson's affects the balance to the point where the patient can no longer walk, even though they may still have the strength.
Dad is now considered late stage Parkinson's where he has all the charming symptoms listed above, along with reduced speech, swallowing issues, severe short term memory loss. With the dementia, he forgets that he can't walk and is always trying to get up and walk. He has succeeded a few times, only to fall over and injure himself.
Dad had struggled with this disease for over ten years now. One day a while ago, being slightly silly, I asked him if he had any advice for me. He said, "Yes. Don't get Parkinson's disease."
The other day I was reading about things they are researching for a cure for Parkinson's. I had the thought, "Wouldn't it be nice if one day they find the cure for this wretched disease and say to themselves 'Of course that's the answer. How did we not know it was that all along?' "
Till that day, we need to remain aware and do what we can to advance the research for a cure for this crippling disease.
PS... Update on the Seal Bark post... dad still has the terrible cough, but it's at least starting to clear in his chest. When I went to see him yesterday, he was sitting in his water chair, gazing out at the trees, quite content. That lifted my spirits a little. ;)
Among dad's initial symptoms were: Bradykinesia (slowness of movement), which affects the fine motor skills and makes simple tasks like getting dressed a major undertaking, The "Parkinson's mask" (stiff face), stooped posture, small handwriting, depression, worrying.
Then it moved into: cognition, behavior, rapid, shuffling steps. It was towards the end of this cycle, we noticed the worrying new symptoms of memory loss and hallucinations. Our observations were confirmed with the diagnose of Parkinson's related Lewy Body Dementia. Shortly after this, he started having falls, where we were informed that Parkinson's affects the balance to the point where the patient can no longer walk, even though they may still have the strength.
Dad is now considered late stage Parkinson's where he has all the charming symptoms listed above, along with reduced speech, swallowing issues, severe short term memory loss. With the dementia, he forgets that he can't walk and is always trying to get up and walk. He has succeeded a few times, only to fall over and injure himself.
Dad had struggled with this disease for over ten years now. One day a while ago, being slightly silly, I asked him if he had any advice for me. He said, "Yes. Don't get Parkinson's disease."
The other day I was reading about things they are researching for a cure for Parkinson's. I had the thought, "Wouldn't it be nice if one day they find the cure for this wretched disease and say to themselves 'Of course that's the answer. How did we not know it was that all along?' "
Till that day, we need to remain aware and do what we can to advance the research for a cure for this crippling disease.
PS... Update on the Seal Bark post... dad still has the terrible cough, but it's at least starting to clear in his chest. When I went to see him yesterday, he was sitting in his water chair, gazing out at the trees, quite content. That lifted my spirits a little. ;)
Tuesday, April 9, 2013
Seal Bark
There's Parkinson's. Then there's Parkinson's with dementia. Then there's Parkinson's with dementia with a cold. Poor wee mite is barking like a seal. Don't need to look too far to see where us three kids came about the infamous seal bark. I first noticed dad coughing early last week. By the end of the week, the bark was in full effect and he had a baritone voice. (Was thinking of contracting him out to the Sydney Philharmonic Choir.) Jokes aside, illnesses are not cool with Parkinson's patients. The fear is that the infection would go into his chest, and that is definitely not what you want to happen. After taking a look at dad on Saturday, the doctor confirmed that dad's chest was clear, and put him on a round of antibiotics.
My heart goes out to him. It is annoying being sick at the best of times. Your head is foggy, your throat hurts, you can struggle to breathe properly. When I saw him tonight, he was not himself at all. I have seen him like this before when things are not right, but it doesn't make it any easier to watch. His brain is taxed which puts all the motor skills (we take for granted) out of sync; where it is a struggle to even put food in his mouth. Of course this makes him very frustrated and asserts his independence even more. I have to reach into my rather large bag of patience and grab a big handful! He was being cheeky and not accepting my help. So I quoted the famous line that children always say, "I will do it myself." He didn't take well to that comment... so I quoted what mom used to say when we didn't get her joke ... I screwed up my face and said, "Excuse me, this is going to be a joke." At which point dad burst into absolute fits of laughter, and then of course, hacking. I have not seen him laugh that hard in years. I don't know what it was, but I obviously struck his funny bone! Which is helpful when you have to clear your throat!
As I was leaving, I said I'd come back in a day or two. He has asked me to come back tomorrow... so I know he is just not feeling well. Usually he is alright with me visiting every few days. That's OK... he isn't too far away. I can take some interior magazines and sit with him for a while and do research for school! (That's what I'm calling it, anyway!)
Hopefully he has a good night's sleep and improves tomorrow.
My heart goes out to him. It is annoying being sick at the best of times. Your head is foggy, your throat hurts, you can struggle to breathe properly. When I saw him tonight, he was not himself at all. I have seen him like this before when things are not right, but it doesn't make it any easier to watch. His brain is taxed which puts all the motor skills (we take for granted) out of sync; where it is a struggle to even put food in his mouth. Of course this makes him very frustrated and asserts his independence even more. I have to reach into my rather large bag of patience and grab a big handful! He was being cheeky and not accepting my help. So I quoted the famous line that children always say, "I will do it myself." He didn't take well to that comment... so I quoted what mom used to say when we didn't get her joke ... I screwed up my face and said, "Excuse me, this is going to be a joke." At which point dad burst into absolute fits of laughter, and then of course, hacking. I have not seen him laugh that hard in years. I don't know what it was, but I obviously struck his funny bone! Which is helpful when you have to clear your throat!
As I was leaving, I said I'd come back in a day or two. He has asked me to come back tomorrow... so I know he is just not feeling well. Usually he is alright with me visiting every few days. That's OK... he isn't too far away. I can take some interior magazines and sit with him for a while and do research for school! (That's what I'm calling it, anyway!)
Hopefully he has a good night's sleep and improves tomorrow.
Wednesday, April 3, 2013
April Showers
We have had a long stretch of lovely sunshine... but the rain hit overnight. I must say, as a transplanted Vancouverite, I was a tiny bit happy to hear the rain. I mean, I did not know what to do with all the sunshine - I don't know how to be that happy! Funny thing, when it started last night, at first I didn't know what the noise was! I had a laugh when I realized it was rain.
April showers do not bring May flowers... at least not in the Southern Hemisphere. I still haven't gotten used to the backwards seasons. It used to be that once March hit, you would be looking forward to the longer days. In Australia, we've been enjoying long days for a very long time, or so it feels like. However, the clocks get set back on Sunday, so it's a return to short days for us. Life down under truly is upside down!
I think it was seasons that confused dad the most. I cannot remember how many times I had to correct him on the time of day. Especially in Vancouver where the sky is still light out till 10pm in the middle of the year. He couldn't figure out why the sun wasn't setting. Even when mom was still alive... I recall one night in the summer where her and I came home to find a cereal bowl in the sink. Dad had woken up in his chair, looked at the time, thought it was morning, so had a bowl of cereal. When we arrived back, we confused him. I remember him sitting at the kitchen table with his head in his hands, saying that it must be the next part of the disease. Looking back, you can see the dementia was evident even five years ago. We didn't really have a clue; thought it was connected to missing pills, or antibiotics he had to take at one point. Perhaps it would be easiest for dementia patients to live at the equator where the days are equal every day!
Five years later, dad doesn't know which day of the week it is. He hardly knows what time of day it is. What he does know is who we are. I may have mentioned this already... but he is making new memories, which is quite amazing. He knows my brother is married, but doesn't quite have the right name. He said to me the other day, L. is married, isn't he? Why yes, he is! As my brother likes to put it, maybe as time goes by, the memory moves out of his short term memory and into his long term memory and then he remembers it. Ah, he's a funny one, my brother.
As for how dad is on the whole... he has been doing a lot of sleeping the last couple of times I've been to see him. I've been trying to take something to do or read, so that I can just be there with him, even if we can't talk. I've been trying to hold his hand, or give him a cuddle just to let him know we care. He has reached out to both my brother and I when we have told him we were leaving, for a hug and a kiss. In writing this now, it feels like some of our fight has left us and there is acceptance with his disease. There is peace in that, and a certain happiness as well. It's hard to explain. Certainly I am sad to see my dad in such a state, and not able to enjoy life to the fullest. I'm thankful we can have this time together, and that he still knows who we are and is still able to show us he loves us, as we are to him.
I know people have their opinions on how I should be living my life. It is a tough one, to find the life/work balance. No, I am not a mother; I do not have kids I am responsible for. However, I am a daughter and have a father I am responsible for. I feel that I cannot work in the traditional full-time capacity... I would not get to see dad through the week... he goes to sleep at six! Like a parent would feel; I don't want to miss precious time with him. People understand when mothers say they want to be with their children. It is much harder to explain to people that I don't want to be so busy that I can't see my dad. Yes, he is in a care home and getting good care. A care home can provide the basic needs in life, but life is more than basic needs. It's about love, and having people who understand you, who support you and are there for you. I want to be able to see dad every few days, and to spend a quantity of time with him every so often. If it makes it that much harder, and takes that much longer for me to figure my life out, then so be it. Each of us makes decisions based on what is best for us. Everyone has their thing; everyone is facing some sort of difficulty in their lives. I am sure we've all learned by now that life is usually a little messy. Our friends and family understand that and support us and nothing else really matters.
April showers do not bring May flowers... at least not in the Southern Hemisphere. I still haven't gotten used to the backwards seasons. It used to be that once March hit, you would be looking forward to the longer days. In Australia, we've been enjoying long days for a very long time, or so it feels like. However, the clocks get set back on Sunday, so it's a return to short days for us. Life down under truly is upside down!
I think it was seasons that confused dad the most. I cannot remember how many times I had to correct him on the time of day. Especially in Vancouver where the sky is still light out till 10pm in the middle of the year. He couldn't figure out why the sun wasn't setting. Even when mom was still alive... I recall one night in the summer where her and I came home to find a cereal bowl in the sink. Dad had woken up in his chair, looked at the time, thought it was morning, so had a bowl of cereal. When we arrived back, we confused him. I remember him sitting at the kitchen table with his head in his hands, saying that it must be the next part of the disease. Looking back, you can see the dementia was evident even five years ago. We didn't really have a clue; thought it was connected to missing pills, or antibiotics he had to take at one point. Perhaps it would be easiest for dementia patients to live at the equator where the days are equal every day!
Five years later, dad doesn't know which day of the week it is. He hardly knows what time of day it is. What he does know is who we are. I may have mentioned this already... but he is making new memories, which is quite amazing. He knows my brother is married, but doesn't quite have the right name. He said to me the other day, L. is married, isn't he? Why yes, he is! As my brother likes to put it, maybe as time goes by, the memory moves out of his short term memory and into his long term memory and then he remembers it. Ah, he's a funny one, my brother.
As for how dad is on the whole... he has been doing a lot of sleeping the last couple of times I've been to see him. I've been trying to take something to do or read, so that I can just be there with him, even if we can't talk. I've been trying to hold his hand, or give him a cuddle just to let him know we care. He has reached out to both my brother and I when we have told him we were leaving, for a hug and a kiss. In writing this now, it feels like some of our fight has left us and there is acceptance with his disease. There is peace in that, and a certain happiness as well. It's hard to explain. Certainly I am sad to see my dad in such a state, and not able to enjoy life to the fullest. I'm thankful we can have this time together, and that he still knows who we are and is still able to show us he loves us, as we are to him.
I know people have their opinions on how I should be living my life. It is a tough one, to find the life/work balance. No, I am not a mother; I do not have kids I am responsible for. However, I am a daughter and have a father I am responsible for. I feel that I cannot work in the traditional full-time capacity... I would not get to see dad through the week... he goes to sleep at six! Like a parent would feel; I don't want to miss precious time with him. People understand when mothers say they want to be with their children. It is much harder to explain to people that I don't want to be so busy that I can't see my dad. Yes, he is in a care home and getting good care. A care home can provide the basic needs in life, but life is more than basic needs. It's about love, and having people who understand you, who support you and are there for you. I want to be able to see dad every few days, and to spend a quantity of time with him every so often. If it makes it that much harder, and takes that much longer for me to figure my life out, then so be it. Each of us makes decisions based on what is best for us. Everyone has their thing; everyone is facing some sort of difficulty in their lives. I am sure we've all learned by now that life is usually a little messy. Our friends and family understand that and support us and nothing else really matters.
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