So life is a lot different now. In so many many ways. Some of which I discussed in my last post. Many of which I haven't yet even identified, Dad was such an integral part of who I am, and certainly who I became in the last two years.
We had a terrible thing happen to one of our children three weeks after Dad's death. That taught me the humility of being in shock, and the formidable-ness of being a parent, protecting and empowering my child whilst falling apart myself. It also gave me reason to be grateful for the kind souls who have helped me through those weeks since.
people who help
In this instance, as with other moments of extreme need, it has been a few reliable dear friends, and some very considerate far-away friends, and even near-strangers who have made an effort to reach out to me in my need. Thank you, beautiful women.
giving the problem to a higher power
I've also had opportunity to really consider what it means to give away the problems to a higher power. I never considered that 'higher power' could be metaphorically simply 'giving away' the problem to my GP for instance. However on Sunday, that is exactly what happened. I informed my GP that since my child's traumatic event I was not coping so well, and no sooner had that problem been passed to him, and I felt better. I don't think this would be everyone's recipe for 'higher power' as not everyone has a GP they've known since they were 12, with the integrity and practicality of mine! However on the subject of higher powers, I realise too, that in a sense, I would actually take my life and its problems to my Dad on a regular basis. I never troubled Dad with commentary on my challenges, but rather in our quiet silences, or in our contemplation of the deep red Azaleas in the garden I believe I was in the habit of quietly unpacking and dumping my problems out, in some of of ritual of my own, involving an appreciation of the perspective that if Dad could cope under the terrible conditions of a nursing home and be pleased about anything at all, then my whole life and its problems couldn't possibly be insurmountable. (even if they were!)
savouring the positive moments
Today I was really struggling at one point. Then I really looked at what I had. My two happy children frolicking in the pool in dappled sunlight, a perfect summer's day. And I thought on that and felt grateful for that until I truly did feel blessed to witness such calm, unfettered peace. I need to continue to take the time to appreciate everything I can.
routines are my friend
I am sticking with existing routines and making new ones! I'm still doing Tai Chi and now I've discovered that a weekly trip to the movies does wonders that I can't live without at the moment.
feeling the 'Dadness'
One of the things that really helped me to feel that blessed sense of happiness was that I made myself see the picture with Dad's eyes. He would have laughed and been delighted at the kids playing, and he would have said to me "Don't worry about all that other nonsense, you'll be all right" I'm blessed to have the opportunity to learn from him, even after he has passed.
feeling the pain
It is easy to try to 'cope' to push aside indignity and pain. Sometimes it is necessary for getting by. But feeling the pain and hurt and sorrow is also vital to being a whole person. Today after an extremely confronting correspondence from my child's school I was brought to tears during a business phone call. And I owned it, that was my pain and sorrow and it wasn't going to be held in at that point, because it was part of who I am. There are some times when crying might not be a great idea, but also sometimes when it is ok to cry regardless of the circumstances.
change my thinking not solving the problem
I read this in a meme today. It absolutely sums up all of the above and more. It is only by perceiving things differently that I will get through this period in my life in a way that leaves me healthier than coming into it.
Be kind and loving. (a reminder for myself and an idea to contemplate)
Thursday, December 11, 2014
Monday, November 17, 2014
7 of the Ways my Dad improved my life
As usual, I have only a limited amount of time to write this blog. Today I have been particularly mindful of the many myriad of ways that through his illness and final years, my father had an incredible influence on my life.
I have been really struggling since his death and needed to write this list in order to begin a journey of regrouping my strengths. At the moment I'm suffering a loss that belies the frail old man who was dependent on others. These are seven of the reasons why my loss is so great, just some of the ways he improved my life:
1. Gratitude - witnessing Dad living in a nursing home, reliant on the courtesy (or lack of it) from other people, relying on their gentleness (or lack thereof), and dependent on them wholly due to his dementia in ways that we can only be horrified at was exhausting emotionally. In order to cope with the sadness of bearing witness to the circumstances it was absolutely necessary to become grateful. Grateful every day that I could help him, give him dignity or something to look forward to; grateful for every day that a 'good' carer was on that he was receiving better treatment that day; grateful that the 'bad' staff were only on for a shift and then would be gone again. Gratitude improves longevity, so learning the lesson of daily gratitude through Dad was incredible.
2. Acceptance - As Dad declined in health both mentally and physically, he never ever lost his will to live or his enjoyment of what life he had left in him. As each new indignity of ageing took over his daily life, he accepted it with grace (mostly) and continued to turn instead towards that which made him happy. He lived for his grandchildren's visits, for my visits, to see the sunshine and flowers, and to kiss the hand of his caring staff. He lived for sausages, and other enjoyed foods, and for the smile of a warm person. He taught me that life is about flowers and family and if you can't have either, just find something and enjoy whatever you can. Bless him for that incredible lifelong lesson I hope to pass along to my children.
3. Strength of mind - nothing creates a need for strength of mind like having to find a way to overcome the gulf between wishing to provide total assistance and dignified care to your loved one, and the reality of there being very little you can actually control. Dad's situation taught me to create my own boundaries around my expectations and actions. He taught me that if I could only help him once a week, that was better than not helping. Acceptance is a key part of having the strength of mind to decisively think positive instead of despairing, I had to learn to accept that what I did had to be enough simply by telling myself that it was.
4. Boundaries - When someone is in a nursing home or hospital, they are in 'their' world, swallowed up within the systems and rules created by those large institutions. Learning to navigate the systems first step was to follow the unwritten rules and boundaries. I now know how to look for these in so many areas of life.
5. Communication - Dad's illness taught me so much about humanity. How to get onto his level and communicate with him, as well as how to negotiate and advocate for him. I had plenty of help from some of the kind people in the system, but without Dad I would never have persevered with learning so much about communication, how to find one key point and focus on that, how to not bombard people with everything you want to say, so many things.
6. Patience - waiting for a doctor for 3 hours is a very effective way to build up a head of steam, however it doesn't help anything. Likewise if a nurse isn't coming to a buzzer call fast enough. It helps to simply apply patience to them and get on with something else while you wait. In the case of more than one buzzer call I simply got on with fixing the problem as best I could myself, knowing they'd turn up eventually.
7. Determination - of the quiet kind. Dad simply didn't give up on walking, regardless of who gave up on him. If people unthinkingly were stupid enough to place him in a position from where walking proved impossible, he would simply get around by any other means he could muster, most of which were so ingenious that carers simply didn't believe his determination or intention. Many people under estimated my father, sadly to his detriment, however the determination he showed, right up until the end of his days will stay with me forever.
Thank you Dad for all you did for me, perhaps without knowing it. I believe though that you did know, and I hope you know how grateful I am for your amazing gifts. Without a father like you, determined and unwavering in your last years I would be poorer for the lack of experience. Love you Dad.
I have been really struggling since his death and needed to write this list in order to begin a journey of regrouping my strengths. At the moment I'm suffering a loss that belies the frail old man who was dependent on others. These are seven of the reasons why my loss is so great, just some of the ways he improved my life:
1. Gratitude - witnessing Dad living in a nursing home, reliant on the courtesy (or lack of it) from other people, relying on their gentleness (or lack thereof), and dependent on them wholly due to his dementia in ways that we can only be horrified at was exhausting emotionally. In order to cope with the sadness of bearing witness to the circumstances it was absolutely necessary to become grateful. Grateful every day that I could help him, give him dignity or something to look forward to; grateful for every day that a 'good' carer was on that he was receiving better treatment that day; grateful that the 'bad' staff were only on for a shift and then would be gone again. Gratitude improves longevity, so learning the lesson of daily gratitude through Dad was incredible.
2. Acceptance - As Dad declined in health both mentally and physically, he never ever lost his will to live or his enjoyment of what life he had left in him. As each new indignity of ageing took over his daily life, he accepted it with grace (mostly) and continued to turn instead towards that which made him happy. He lived for his grandchildren's visits, for my visits, to see the sunshine and flowers, and to kiss the hand of his caring staff. He lived for sausages, and other enjoyed foods, and for the smile of a warm person. He taught me that life is about flowers and family and if you can't have either, just find something and enjoy whatever you can. Bless him for that incredible lifelong lesson I hope to pass along to my children.
3. Strength of mind - nothing creates a need for strength of mind like having to find a way to overcome the gulf between wishing to provide total assistance and dignified care to your loved one, and the reality of there being very little you can actually control. Dad's situation taught me to create my own boundaries around my expectations and actions. He taught me that if I could only help him once a week, that was better than not helping. Acceptance is a key part of having the strength of mind to decisively think positive instead of despairing, I had to learn to accept that what I did had to be enough simply by telling myself that it was.
4. Boundaries - When someone is in a nursing home or hospital, they are in 'their' world, swallowed up within the systems and rules created by those large institutions. Learning to navigate the systems first step was to follow the unwritten rules and boundaries. I now know how to look for these in so many areas of life.
5. Communication - Dad's illness taught me so much about humanity. How to get onto his level and communicate with him, as well as how to negotiate and advocate for him. I had plenty of help from some of the kind people in the system, but without Dad I would never have persevered with learning so much about communication, how to find one key point and focus on that, how to not bombard people with everything you want to say, so many things.
6. Patience - waiting for a doctor for 3 hours is a very effective way to build up a head of steam, however it doesn't help anything. Likewise if a nurse isn't coming to a buzzer call fast enough. It helps to simply apply patience to them and get on with something else while you wait. In the case of more than one buzzer call I simply got on with fixing the problem as best I could myself, knowing they'd turn up eventually.
7. Determination - of the quiet kind. Dad simply didn't give up on walking, regardless of who gave up on him. If people unthinkingly were stupid enough to place him in a position from where walking proved impossible, he would simply get around by any other means he could muster, most of which were so ingenious that carers simply didn't believe his determination or intention. Many people under estimated my father, sadly to his detriment, however the determination he showed, right up until the end of his days will stay with me forever.
Thank you Dad for all you did for me, perhaps without knowing it. I believe though that you did know, and I hope you know how grateful I am for your amazing gifts. Without a father like you, determined and unwavering in your last years I would be poorer for the lack of experience. Love you Dad.
Friday, October 3, 2014
An open letter to the medical team treating my father
Dear Doctors
I wish to explain to you my position on my father's treatment while in hospital (and out of hospital for that matter).
Last night, Dad held out his arm, covered in little white dots from blood tests, and made some noises that sounded like he was trying to get a sentence out. I asked him to repeat himself. I couldn't believe what I heard! "Did you just say to me "I've got bad veins"?" I asked him. He grinned at me with a twinkle in his eye! Dad was making a joke about his situation, less than 24 hours after waking up from an unconscious state that had lasted 8 days.
My father has dementia. I don't care what 'category' of severity that you wish to classify it as, because your classifications mean nothing to my father, or to us, his family. What means something to us is that he contributes to our life in a positive way, despite the obvious challenges he presents in extra responsibilities.
Even now, Dad is contributing to the world. In the last week he is teaching me - to never ever give up; to defy those in authority or who think they know better than you what you know to be your own truth. He has taught me during the past two years that there is ALWAYS something to appreciate. He has inspired his nephew in Melbourne through his tenacity and determination.
My children when faced with his potential death, remember him still as the Grandad who loves them unconditionally, without judgement, and who continued to play with them, even as recently as playing ball early this year.
It is important to remember that he has had many opportunities to leave us through sickness and he chooses not to do so, coming back from the brink through sheer willpower alone.
I have had time to reflect on your suggestion that my father ought to not be treated for any new infections. I contest that you are mistaken in this assertion. Australia is a first world country. One of the markers of the wealth of this nation is that we are able to provide health care for our sick, ailing and elderly. All of them. There should be no judgmental decisions made based on Dad's disease or what your own morality insists about who is worthy. The morality that is relevant here is that of Dad, and of us, his family. You may be a doctor, but you are not my family's moral compass, nor is that your role. The truth is, that in a poorer country, with limited health resources, a decision about who is most deserving would be relevant, however we are not in that situation. If there is a fiscal problem with supply of medicine on the Sunshine Coast in 2014 then it is politicians we need to pressure, not the family of an elderly man who is determined to live.
Perhaps Dad can provide an important lesson to your young student doctors about the dangers of making assumptions about someone else's quality of life. As an elderly friend pointed out to me last night, there are fit young people in the world with better physical and mental abilities than Dad whose quality of life would be considered poorly, yet those people are not judged when being considered for treatment. Why should you make this judgement when we are supposed to be a wealthy country?
So it is with delight at the tenacity of a single human being with great lessons still to impart to his family, that I request that you don't just pay lip service to the concept of treatment for my Dad, but you give him the full benefit of medical assistance, including fully discussing with us his necessary nutritional requirements, not just glucose which is making a pretense at assistance, but fully and openly discuss the path to improving Dad's health. Let's leave the 'will he or won't he survive?' discussion aside, and give him the opportunity to make that decision for himself, with the best possible care from your team to support him.
Monday, September 29, 2014
Dementia v's the world
I wish for a world when a person trying to sit up is not viewed as crazy, where a person with dementia is not viewed as worthless and miserable. Until we live in that world I am going to use some of the energy I've been putting towards caring for my Dad and do what I can to contribute to bettering the treatment of people living with dementia. It is a cruel disease and at the moment we are so far from treating sufferers reasonably let alone with dignity. For instance, in Sunshine Coast hospitals at least, they still treat dementia patients with both risperidol and haloperidol - both of which carry FDA warnings in America as their use has been found to cause higher incidence of death for people with dementia. And here we are, my Dad and I, in a position to be adding to that statistic :(
Monday, September 8, 2014
Happiness - a post-script to Queen / Music Heals
A few things came to me this week. One of those things was the realisation that in this post entitled "Music Heals - Impressions of Queen + Adam Lambert" I never did get back to what I meant by that title.
To be quite blunt about it, over the course of the past year or so, I've discovered (and to some extent, so has science) that happiness actually heals auto-immune disease. Please don't misunderstand me, I don't think that you just have to think happy thoughts and a disease that has plagued you for your entire life will disappear, that isn't what I mean. From a purely personal perspective, with the kind of disease I have, truly being in a state of happiness works magic on my levels of pain, swelling and from all accounts, actual disease progression.
And music makes me wildly, incredibly happy, ergo the previous title about Queen + Adam Lambert's concert in Brisbane. I felt so alive, so invigorated and so much less like a disabled ill person when that concert was over. Music brings so much hope, and to be surrounded by such a crowd filled with the joy of living, that is a magical kind of thing.
It is interesting as I did as much welling up with tears as I did laughing (probably more) during the concert, as Queen's music brings back incredibly sensitive & poignant memories for me. Yet they were tears of release, of comfort in the music. I felt this also when overwhelmed with emotion at Bruce Springsteen concerts, the tears were all part of the pleasure of the immersion into the music.
Today, after running out of money at the supermarket and being cranky with the children because I was worried about getting by until Friday I realised that the exact time I needed a happy attitude was right now. There is no point waiting till things get better to be happy. Happiness is a choice we make and all other choices follow accordingly. I had not long decided to be happy, then I made all the children yummy afternoon tea, we played soccer, made damper for supper and I was able to handle absolutely everything this evening calmly! It felt so much better than letting myself get distressed over a lack of spending money when we already have everything we need to get by for the week. It was easy to feel happiness after listening to incredible live music, but not so simple when at home surrounded by life's dramas.
So this week I've set myself a challenge. Not only to pursue happiness, through exercise, what I eat and drink, gratitude and music; but to blog daily until next Monday night about some aspect of how I am going with it. So far the 'formula' is working wonderfully, I'm ready for a good night's rest, not a care in the world!
To be quite blunt about it, over the course of the past year or so, I've discovered (and to some extent, so has science) that happiness actually heals auto-immune disease. Please don't misunderstand me, I don't think that you just have to think happy thoughts and a disease that has plagued you for your entire life will disappear, that isn't what I mean. From a purely personal perspective, with the kind of disease I have, truly being in a state of happiness works magic on my levels of pain, swelling and from all accounts, actual disease progression.
And music makes me wildly, incredibly happy, ergo the previous title about Queen + Adam Lambert's concert in Brisbane. I felt so alive, so invigorated and so much less like a disabled ill person when that concert was over. Music brings so much hope, and to be surrounded by such a crowd filled with the joy of living, that is a magical kind of thing.
It is interesting as I did as much welling up with tears as I did laughing (probably more) during the concert, as Queen's music brings back incredibly sensitive & poignant memories for me. Yet they were tears of release, of comfort in the music. I felt this also when overwhelmed with emotion at Bruce Springsteen concerts, the tears were all part of the pleasure of the immersion into the music.
Today, after running out of money at the supermarket and being cranky with the children because I was worried about getting by until Friday I realised that the exact time I needed a happy attitude was right now. There is no point waiting till things get better to be happy. Happiness is a choice we make and all other choices follow accordingly. I had not long decided to be happy, then I made all the children yummy afternoon tea, we played soccer, made damper for supper and I was able to handle absolutely everything this evening calmly! It felt so much better than letting myself get distressed over a lack of spending money when we already have everything we need to get by for the week. It was easy to feel happiness after listening to incredible live music, but not so simple when at home surrounded by life's dramas.
So this week I've set myself a challenge. Not only to pursue happiness, through exercise, what I eat and drink, gratitude and music; but to blog daily until next Monday night about some aspect of how I am going with it. So far the 'formula' is working wonderfully, I'm ready for a good night's rest, not a care in the world!
Sunday, September 7, 2014
Father's Day Memories
My Dad suffers with dementia. He isn't with us in the way he used to be, but his love is strong, and his will to live even stronger. For that I admire and thank him.
My memories of my father and his influence on my life are both intensely positive and surprisingly negative.
The positive memories include long days in the sun, on the 14 ft boat, soaking up the sunshine and fishing for Whiting, Bream and Flathead. And the excitement of cooking and eating all the fresh fish on the fire at night, then playing 500 late at night in our converted bus camper on Macleay Island in Moreton Bay, Brisbane. The island was like another world, of adventure and fun and as I take my children to regular holiday spots now, I see them gain a little glimpse of my island holiday life and I understand their excitement and wonder.
I remember long hours driving in the car with Dad, talking. My Dad didn't talk about politics or world events, but he would talk for hours about nature, especially birds and rocks, and about social histories. He'd also get me doing maths on our long trips, reading the map for how many kilometers to the nearest town, then to the nearest big town, then to the day's final destination! Then as I grew older, the maths became more complicated as I calculated petrol, either how far we'd make it till the petrol station, or how much mileage we got from filling the tank. I learnt to choose accommodation by price and amenities this same way, on our long trips.
The not-so-great memories include many times on summer holidays asking for Dad to show me how to do basic mechanics on my car. Dad was an auto-electrician, so he knew these things. Eventually friends of mine at university showed me how to change the oil in my car. Obviously they were just that little bit less sexist than my Dad who was born between the two world wars and believed that a man's job was to look after a woman and make sure she wanted for nothing. It is possible that his need for this to be true stemmed from his own parents, as his Dad suffered PTSD from World War I and from all accounts his mother perhaps did quite a bit of complaining at having to take over significant amounts of work. I don't remember her well, but Dad's childhood friends are fond of telling me that she was not particularly generous of spirit!
So this father's day I'm reflecting on how my Dad's parenting reflects on my parenting style....and in order to not make another of Dad's mistakes (at least not right at this instant) I'm off to watch my children wake up their father with toast and coffee they prepared themselves!
Happy Fathers Day to all the Dads out there!
My memories of my father and his influence on my life are both intensely positive and surprisingly negative.
The positive memories include long days in the sun, on the 14 ft boat, soaking up the sunshine and fishing for Whiting, Bream and Flathead. And the excitement of cooking and eating all the fresh fish on the fire at night, then playing 500 late at night in our converted bus camper on Macleay Island in Moreton Bay, Brisbane. The island was like another world, of adventure and fun and as I take my children to regular holiday spots now, I see them gain a little glimpse of my island holiday life and I understand their excitement and wonder.
I remember long hours driving in the car with Dad, talking. My Dad didn't talk about politics or world events, but he would talk for hours about nature, especially birds and rocks, and about social histories. He'd also get me doing maths on our long trips, reading the map for how many kilometers to the nearest town, then to the nearest big town, then to the day's final destination! Then as I grew older, the maths became more complicated as I calculated petrol, either how far we'd make it till the petrol station, or how much mileage we got from filling the tank. I learnt to choose accommodation by price and amenities this same way, on our long trips.
The not-so-great memories include many times on summer holidays asking for Dad to show me how to do basic mechanics on my car. Dad was an auto-electrician, so he knew these things. Eventually friends of mine at university showed me how to change the oil in my car. Obviously they were just that little bit less sexist than my Dad who was born between the two world wars and believed that a man's job was to look after a woman and make sure she wanted for nothing. It is possible that his need for this to be true stemmed from his own parents, as his Dad suffered PTSD from World War I and from all accounts his mother perhaps did quite a bit of complaining at having to take over significant amounts of work. I don't remember her well, but Dad's childhood friends are fond of telling me that she was not particularly generous of spirit!
So this father's day I'm reflecting on how my Dad's parenting reflects on my parenting style....and in order to not make another of Dad's mistakes (at least not right at this instant) I'm off to watch my children wake up their father with toast and coffee they prepared themselves!
Happy Fathers Day to all the Dads out there!
Saturday, September 6, 2014
Atlantic City - modernism gone wrong?
Being a Springsteen fan, I'm browsing his 'video of the week' recent additions and after watching the Video for 'Atlantic City' I am struck by how much the meaning of the song resonates with my own beliefs, and also with my own local area.
The video is entirely black and white, adding a sense of lonely isolation. To me it tells the story of life in a changing world.
Transposing shots of traditional stone and 'modern' architecture is architecturally one of my favourite 'moments' about exploring cities with history. The cold heartlessness of sleek modern design against the artistic, fancy stonework, with traditional works that date back to ancient Greek and Roman designs always sends a shiver down my spine. This video places the contrast beautifully midway through, sending home the coldness of the modern world.
I'm pretty poor with words, more so when I'm limited to a 15 minute window or so to type uninterrupted! Nonetheless I will have a go at capturing what the video emphasizes so beautifully about the song, reflecting a strong social commentary.
I'm getting things all mixed up because there is just so much packed into this one song, but Bruce Springsteen has captured the incredible social troubles underpinning all that there is about gambling. Australia at the moment has significant gambling addiction issues, and we are feeding that with one of the highest rates of poker machines (slot machines) per capita in the world. Gambling problems, like other addictions, create their own secondary social issues, like petty crime, unemployment, transience due to housing stress to name a few.
Seaside resort towns reliant on tourism often also exhibit the same patterns of social problems. Springsteen reflects these perfectly with his imagery, providing a poignant background to the lyrics, delivering a real sense of how stark and unforgiving it can be to find yourself "on the wrong side of that line" of winners and losers.
I am thrilled to see the video track over the words "progress and industry" before settling on Atlantic City. I feel like this brings home the question asked by this song, and which we all should continue to ask "At what price, progress?"
The video is entirely black and white, adding a sense of lonely isolation. To me it tells the story of life in a changing world.
photo by: Michael S Fleischmann
Transposing shots of traditional stone and 'modern' architecture is architecturally one of my favourite 'moments' about exploring cities with history. The cold heartlessness of sleek modern design against the artistic, fancy stonework, with traditional works that date back to ancient Greek and Roman designs always sends a shiver down my spine. This video places the contrast beautifully midway through, sending home the coldness of the modern world.
I'm pretty poor with words, more so when I'm limited to a 15 minute window or so to type uninterrupted! Nonetheless I will have a go at capturing what the video emphasizes so beautifully about the song, reflecting a strong social commentary.
I'm getting things all mixed up because there is just so much packed into this one song, but Bruce Springsteen has captured the incredible social troubles underpinning all that there is about gambling. Australia at the moment has significant gambling addiction issues, and we are feeding that with one of the highest rates of poker machines (slot machines) per capita in the world. Gambling problems, like other addictions, create their own secondary social issues, like petty crime, unemployment, transience due to housing stress to name a few.
Seaside resort towns reliant on tourism often also exhibit the same patterns of social problems. Springsteen reflects these perfectly with his imagery, providing a poignant background to the lyrics, delivering a real sense of how stark and unforgiving it can be to find yourself "on the wrong side of that line" of winners and losers.
I am thrilled to see the video track over the words "progress and industry" before settling on Atlantic City. I feel like this brings home the question asked by this song, and which we all should continue to ask "At what price, progress?"
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