Happy Monday morning... at least here in Sydney it is! I came across this article on the Michael J Fox website the other day, so am sharing it here. It is a gracious account of another family's experience with a father with Parkinson's and dementia. It is very similar to dad's symptoms, and it explains it better than I can...
“We can’t have the conversations others take for granted anymore, and he often says silly things. But when he does, we laugh about it together.”
http://blog.michaeljfox.org/2012/04/learning-it-familys-journey-parkinsons-dementia/
Monday, April 23, 2012
Friday, April 20, 2012
Smile
I have been feeling a touch guilty about venting in yesterday's post. But I guess that is the way life goes... some days you are up; some days not so much.
I was invited to dad's care home this evening for an "evening of entertainment". Well, easy on the "evening"... some were nodding off fifteen minutes in! In all seriousness... it was lovely to hear the choir sing around the piano (and now I am using the word 'lovely'... so perhaps I should be selecting a bed as well?). I got a teeny bit teary eyed when they sang "I Still Call Australia Home". That song has always tugged at my heart strings, but never has it been so poignant as it is now.
Now, maybe I have been living under a rock... no, I know I have been! I have never heard the song, Smile. In a Google search, I see it has been covered by everyone from Nat King Cole to Michael Jackson. They sang the song within a medley this evening and in listening to the lyrics, I thought the song quite timely. In second thought, I do believe I have heard the song before, but I've never really listened to it. So here are the lyrics... and here is me signing off with a smile ;)
Smile
Smile, though your heart is aching
Smile, even though it's breaking
When there are clouds in the sky, you'll get by
If you smile through your fear and sorrow
Smile and maybe tomorrow
You'll find that life is still worthwhile
Light up your face with gladness
Hide every trace of sadness
Although a tear may be ever so near
That's the time you must keep on trying
Smile, what's the use of crying
You'll find that life is still worthwhile, if you just smile
That's the time you must keep on trying
Smile, what's the use of crying
You'll find that life is still worthwhile
If you just smile
Wednesday, April 18, 2012
Life with Parkinson's Disease
Maybe I am the one with the problem. Maybe other women could do this in their sleep. Raise kids or run a successful business or promote world peace and take care of their sick father in their spare time. I am having no such luck. This past week; it feels like the bottom has blown out of the paper bag. As in... I was holding it together, but now the bottom has exploded and stuff has shot out everywhere.
The advice has always been, a day at a time... my poor brain is in such a state that that little gem is no longer helping. I hardly know where to start, so I will try bullet points:
- Dad is now in a wheelchair, which obviously means he has to be pushed everywhere. The dementia has effected his brain in that his feet don't remain on the foot pegs, or his arms drop over onto the wheels. So when pushing him along, every 10 steps or so, the chair will slow down. Invariably I've just dragged his foot 5 steps, or his arm has been dragging on a wheel. I have to stop, adjust and keep going again. Which is not as easy said as done. With Parkinson 's, you can tell the foot to move onto the foot rest, but the brain doesn't respond. I have to end up adjusting him manually. Heading to the doctor's office one day, he dropped his feet inside a packed elevator. When the carriage reached our floor, both feet were off the foot rest and I could not move the chair. I was struggling to get his feet back on the foot rests while trying to get him off the elevator as the doors were closing on us. I am sure there is something I could add to the foot rest so his feet don't drop off... add it to the list below.
- Patients in care homes receive general doctor's visits in house, but have to go to the specialist office for specialized care. Urologist, neurologist, optometrist etc. Often these offices have machines that you can't transport to a nursing home, so you have to transport the patient to the doctor's office. Which means organizing a wheelchair taxi and finding someone to accompany the patient. Since dad cannot communicate for himself, I'm the one to accompany him and speak on his behalf. Since he has late-stage Parkinson's disease, the trips to the neurologist are plenty. Dad's glasses have gone missing, but I also know it has been a year since his last appointment, so there will be another visit to the optometrist. Just have to find one. Add that to the list.
- With the move, all the legal documents have to be revised to comply with Australian law. I found out last week that dad needs to be found in a sound state of mind to be able to sign these documents. Which means a referral to a neuro-pschycologist. Another doctor visit. Some institutions here have accepted the Canadian Power of Attorney, some do not. I need the POA to act on his behalf. I had filled out paperwork for Aged Care a few weeks back and filled in the section that appointed me the nominee of his behalf, with supporting documentation. In speaking to the Aged Care department the other day regarding another matter (another story), they told me I needed to be appointed as the nominee and directed me to the form on their website. More paperwork. I fear they are going to want the Australian Power of Attorney. Which I don't yet have as I need to visit the neuro-pcyscologist blah blah blah. Add it to the list.
- Also added to the list is filing for Canadian 2011 taxes, which is now complicated with resident and non-resident taxes. And now I have to find an accountant here to assist me with resident and non-resident filing. Add it to the list.
It is not hard to see from the above as to why I am feeling bogged down and not making any progress. The list above details dad's care only. Then there is my whole mess to detail. I do not have a doctor/dentist/accountant of my own as there has not been time to sort out that. I have to find work immediately. I was looking for part-time office work so I can bring in a much needed income while managing dad's needs. I have been so busy with dad's affairs over the past week that I have barely been able to manage my own job search. Seems to be everyone wants a part-time office job to tie themselves over. A job, a house, a car seems like a daydream these days.
There is more I could add, but I am bored! I should press on and be productive. Another day of errands... another office to visit because their website does not work and I cannot get through on the phone. The joys!
The advice has always been, a day at a time... my poor brain is in such a state that that little gem is no longer helping. I hardly know where to start, so I will try bullet points:
- Dad is now in a wheelchair, which obviously means he has to be pushed everywhere. The dementia has effected his brain in that his feet don't remain on the foot pegs, or his arms drop over onto the wheels. So when pushing him along, every 10 steps or so, the chair will slow down. Invariably I've just dragged his foot 5 steps, or his arm has been dragging on a wheel. I have to stop, adjust and keep going again. Which is not as easy said as done. With Parkinson 's, you can tell the foot to move onto the foot rest, but the brain doesn't respond. I have to end up adjusting him manually. Heading to the doctor's office one day, he dropped his feet inside a packed elevator. When the carriage reached our floor, both feet were off the foot rest and I could not move the chair. I was struggling to get his feet back on the foot rests while trying to get him off the elevator as the doors were closing on us. I am sure there is something I could add to the foot rest so his feet don't drop off... add it to the list below.
- Patients in care homes receive general doctor's visits in house, but have to go to the specialist office for specialized care. Urologist, neurologist, optometrist etc. Often these offices have machines that you can't transport to a nursing home, so you have to transport the patient to the doctor's office. Which means organizing a wheelchair taxi and finding someone to accompany the patient. Since dad cannot communicate for himself, I'm the one to accompany him and speak on his behalf. Since he has late-stage Parkinson's disease, the trips to the neurologist are plenty. Dad's glasses have gone missing, but I also know it has been a year since his last appointment, so there will be another visit to the optometrist. Just have to find one. Add that to the list.
- With the move, all the legal documents have to be revised to comply with Australian law. I found out last week that dad needs to be found in a sound state of mind to be able to sign these documents. Which means a referral to a neuro-pschycologist. Another doctor visit. Some institutions here have accepted the Canadian Power of Attorney, some do not. I need the POA to act on his behalf. I had filled out paperwork for Aged Care a few weeks back and filled in the section that appointed me the nominee of his behalf, with supporting documentation. In speaking to the Aged Care department the other day regarding another matter (another story), they told me I needed to be appointed as the nominee and directed me to the form on their website. More paperwork. I fear they are going to want the Australian Power of Attorney. Which I don't yet have as I need to visit the neuro-pcyscologist blah blah blah. Add it to the list.
- Also added to the list is filing for Canadian 2011 taxes, which is now complicated with resident and non-resident taxes. And now I have to find an accountant here to assist me with resident and non-resident filing. Add it to the list.
It is not hard to see from the above as to why I am feeling bogged down and not making any progress. The list above details dad's care only. Then there is my whole mess to detail. I do not have a doctor/dentist/accountant of my own as there has not been time to sort out that. I have to find work immediately. I was looking for part-time office work so I can bring in a much needed income while managing dad's needs. I have been so busy with dad's affairs over the past week that I have barely been able to manage my own job search. Seems to be everyone wants a part-time office job to tie themselves over. A job, a house, a car seems like a daydream these days.
There is more I could add, but I am bored! I should press on and be productive. Another day of errands... another office to visit because their website does not work and I cannot get through on the phone. The joys!
Follow Up
By no means do I profess to be an expert on health care. I've heard the praise and criticism for the medical systems in both Canada and Australia. So far, I have very happy with the care dad has received in Australia. Dad has been to see the neurologist at the private hospital in Sydney; part which is covered and the other part he has to pay for. In my opinion, dad is receiving more attention with his Parkinson's disease. There are options which are overseen by the neurologist; which in Canada was dealt with by two departments. There was no cohesion, plus it required double the visits. Maybe it was just the situation at the time. At any rate, the neurologist is on top of things now and we are seeing tiny results now.
About ten years ago, dad was working on a large home project out on the flats in Delta when he first noticed he was having a problem with saliva and swallowing. He knew something was wrong, but was unaware at the time that this was one of the first signs of Parkinson's. For years he carried around a handkerchief to deal with the issue; chewing gum sometimes helped as well. Looking back, the drooling became very bad, though I cannot quite remember when. When we were in the neurologist office the first time in Sydney, he offered Botox injections for the drooling. We had never heard of it before... and to find out there could be respite from this annoying Parkinson's side effect, well... it felt like a gift!
We had a follow up appointment to the Exelon patch last week, so dad was given the Botox injections in his jaw at that time. It takes about two days to 'take' and there should be some noticeable change in a week. It lasts approx 4 months. I was tempted to ask for a shot for the worry lines between my brows. Next time.
The Exelon patch seems to be giving some assistance in the memory department. The doctor asked about memory and I said dad seemed to be retaining a bit more information. He asked about the hallucinations... was dad still 'building things'? (See... it helps to chatter on about random things, as I am prone to do.) I paused a minute before realizing that dad hasn't been as wonky as he could be. Dad piped up and said, 'The hallucinations haven't been as bad, that's for sure.' (Huh? There he goes... following along when I least expect it!) Turns out that the reduced hallucinations are a good sign that the patch is working... and that it does help with the hallucinating... another pleasant result.
Post doctor visit... we walked down the street to have coffee and lunch at a cafe in Darlinghurst. Dad had a tissue in his hand and had offhandedly asked me to throw it out. I didn't really pay attention, thinking he still needed it. As we walked past a garbage can, he fired the tissue into the side opening! I about fell over laughing! He had sat there in his chair, scouting out a trash can. Seeing one, he let go with his garbage! Bulls eye! He never ceases to surprise me!!
About ten years ago, dad was working on a large home project out on the flats in Delta when he first noticed he was having a problem with saliva and swallowing. He knew something was wrong, but was unaware at the time that this was one of the first signs of Parkinson's. For years he carried around a handkerchief to deal with the issue; chewing gum sometimes helped as well. Looking back, the drooling became very bad, though I cannot quite remember when. When we were in the neurologist office the first time in Sydney, he offered Botox injections for the drooling. We had never heard of it before... and to find out there could be respite from this annoying Parkinson's side effect, well... it felt like a gift!
We had a follow up appointment to the Exelon patch last week, so dad was given the Botox injections in his jaw at that time. It takes about two days to 'take' and there should be some noticeable change in a week. It lasts approx 4 months. I was tempted to ask for a shot for the worry lines between my brows. Next time.
The Exelon patch seems to be giving some assistance in the memory department. The doctor asked about memory and I said dad seemed to be retaining a bit more information. He asked about the hallucinations... was dad still 'building things'? (See... it helps to chatter on about random things, as I am prone to do.) I paused a minute before realizing that dad hasn't been as wonky as he could be. Dad piped up and said, 'The hallucinations haven't been as bad, that's for sure.' (Huh? There he goes... following along when I least expect it!) Turns out that the reduced hallucinations are a good sign that the patch is working... and that it does help with the hallucinating... another pleasant result.
Post doctor visit... we walked down the street to have coffee and lunch at a cafe in Darlinghurst. Dad had a tissue in his hand and had offhandedly asked me to throw it out. I didn't really pay attention, thinking he still needed it. As we walked past a garbage can, he fired the tissue into the side opening! I about fell over laughing! He had sat there in his chair, scouting out a trash can. Seeing one, he let go with his garbage! Bulls eye! He never ceases to surprise me!!
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