Life is a process. In fact a good friend and preacher friend of mine said life is the process of dying....absolutely true. Someone else said " nobody gets out ( of this life) alive. True again.
But it's the process you see that usually gives us a challenge. And anyone who has an illness, especially one like PD that affects the mind will soon enough find that there is a process within the process. As the disease moves relentlessly forward I am finding more and more that PD has changed me in so many ways. And not always for the good. My wife and caregiver also sees where PD has changed her.
Those of us with the disease may find that we have a lot of trouble communicating and phrasing our thoughts so that others can follow our train of thought. We don't always make the best decisions sometimes either. This can lead to tension and confusion between a couple dealing with the disease and resentment and other negative feelings. In our case, when those kinds of issues began to develop, I was slow to recognize them and refused to see how PD was affecting my thought process and decision making and communication skills. After all, in my business career I excelled at communication and decision making and my thought processes have always been organized and effective. Now, even though I run a 1.5 million dollar retail operation rather well, that skill doesn't always carry over at home. Some of this may be that I am so filled to capacity in my job that there is no room for much else or I am so exhausted by the effort it takes to do the job while struggling with PD that there is no energy left. Even though both are true, there has also come the realization (by me) that I am NOT always clear in my communication with my family. I DON'T always make the right decision. Then when my family provides feedback, sometimes it makes me feel inadequate and incompetent which causes doubt and at times, apathy . After all, if I am no good at life any more, why try ? After a couple years of the cycle, it begins to take a toll.
When the realization hits that my mind is not hitting on all eight cylinders on top of not liking the physical "me" I see in the mirror each day, now I don't like who I have become. My wife feels exactly the same. She doesn't like that she has lost the me she fell in love with and she doesn't like who she has become in reaction to who I have become. Sounds like disaster in the making and field day for the divorce attorneys !
However, that is not an option for either of us. So what is the answer to this very tough situation ? For us , it will be finding a good counselor ( to be recommended by my Neuro) who specializes in treating couples with these kinds of issues. Along with lots and lots of open and honest communication. It will hurt sometimes, but the hurt will quickly turn to hope as it always does when two people who are committed and love each other find the common ground and conquer the obstacles thrown in their path by PD, life and this process we call life
Apathy, depression, fatigue, this puzzle called PD. We must put one foot in front of the other day after day and remember that life is a wonderful gift that is meant to be lived and enjoyed.
Shaaky
Sunday, December 18, 2011
Wednesday, December 14, 2011
Changes in Latitude, Changes in Attitude....
A Jimmy Buffet song ? Seriously ?
Absolutely.
The title if nothing else fits right now. We recently changed latitudes....longitude too for that matter. And for sure my attitude has been changing....the rest of the lyrics fit pretty well in to someone like me....getting older, missing things from the past....
Getting harder to type now so blogging has become a rarity but I always feel like I have something to say that might make a difference to someone, somewhere. Wondering if Facebook Notes is more appropriate.....but it only reaches my social community not the world...
Anyway, we moved to a farmhouse in the country closer to my work. By springtime I hope we will be back in a routine. We want to put in some laying hens in the chicken coop....have a garden, raise our kids in a less stressful , more rural area and teach them things we learned growing up like responsibility, work ethic, how to do something other than play X box in your free time....
It's going to be great fun and adventure !
As for me, well, my shop is gone but I do have a corner in the mudroom to tinker on guns and reload. And 40 acres to wander and shoot on. Maybe one day I can have a little building like my friend Jim !
The disease is relentless. My wonderful wife and I are learning how to navigate thru some very tricky waters with memory loss, inability to express OR recognize some emotions, anger control issues, etc. Young onset is totally different from normal age onset with a set of problems and issues that make mush of your brain !
Then there is my Dad, 95 years old, went down with 7 broken ribs , spending 2-3 nights a week at his home caring for him. Watching his decline has been an education all on it's own.
On a more positive side, my oldest child just got a job that should set him up for life. He is very happy and I am so happy for him. He recently watched his little sister have her nightly going to bed "dance" and special words with me. You would have to see and hear this to understand but it is special.
While it is true that I am unable to do many things I want to still do like building and racing cars and a whole list of other more minor things....I am fortunate to know exactly what I want to do going forward.
Live life as simply and stress free as possible enjoying as much time as I possibly can with my wife and kids. I have had my time to have fun. My time is for them now. Filled with as much love and laughter as I can ....
Absolutely.
The title if nothing else fits right now. We recently changed latitudes....longitude too for that matter. And for sure my attitude has been changing....the rest of the lyrics fit pretty well in to someone like me....getting older, missing things from the past....
Getting harder to type now so blogging has become a rarity but I always feel like I have something to say that might make a difference to someone, somewhere. Wondering if Facebook Notes is more appropriate.....but it only reaches my social community not the world...
Anyway, we moved to a farmhouse in the country closer to my work. By springtime I hope we will be back in a routine. We want to put in some laying hens in the chicken coop....have a garden, raise our kids in a less stressful , more rural area and teach them things we learned growing up like responsibility, work ethic, how to do something other than play X box in your free time....
It's going to be great fun and adventure !
As for me, well, my shop is gone but I do have a corner in the mudroom to tinker on guns and reload. And 40 acres to wander and shoot on. Maybe one day I can have a little building like my friend Jim !
The disease is relentless. My wonderful wife and I are learning how to navigate thru some very tricky waters with memory loss, inability to express OR recognize some emotions, anger control issues, etc. Young onset is totally different from normal age onset with a set of problems and issues that make mush of your brain !
Then there is my Dad, 95 years old, went down with 7 broken ribs , spending 2-3 nights a week at his home caring for him. Watching his decline has been an education all on it's own.
On a more positive side, my oldest child just got a job that should set him up for life. He is very happy and I am so happy for him. He recently watched his little sister have her nightly going to bed "dance" and special words with me. You would have to see and hear this to understand but it is special.
While it is true that I am unable to do many things I want to still do like building and racing cars and a whole list of other more minor things....I am fortunate to know exactly what I want to do going forward.
Live life as simply and stress free as possible enjoying as much time as I possibly can with my wife and kids. I have had my time to have fun. My time is for them now. Filled with as much love and laughter as I can ....
Friday, May 27, 2011
Courage
Life in general is challenging and usually will require courage at some point or another. Recently, I was given an example of courage that caused me to stop and evaluate my future and the future of my family. Courage can take many forms and shapes and can even be mistaken as stupidty !
For instance, when I was diagnosed with PD we were eight months pregnant with our daughter Rielly-Anne. Most would agree that having a child at fifty years old took courage on my part. Many would say and have in fact said it was stupidity.
A few years later, when we decided to have another child , it was difficult to find anyone who didn't think it was a stupid or reckless decision. Now, with Cecilia almost two years old, while challenging, it most certainly was not stupidity. It was carefully considered, planned for, and has brought us much joy and happiness. Was it courage ?
Yes. The courage to live our lives in spite of PD. The courage to break from tradition. The courage to begin something without knowing how it will end. The courage to begin something knowing certain things would likely happen. But not stupidity.
This week my oldest brother who has PD+MSA ended up in the hospital. Infection, very weak. He has a catheter, a feeding tube, can't speak or do anything else for himself. When I saw him the other night, I felt sure the end was near. His wife was very upset and felt the same way.
All I could say to him was that I loved him, take it easy and relax, and I told him if I could I would take his place. It broke my heart to see him in such a horrible condition.
When I talked to my sister in law, she felt guilty because she talked him into the feeding tube over a year ago when he initially did not want one. She felt she had prolonged his suffering. In reality, HE made the final decision, not her. And in doing so, he was able to be around to see what is likely his last grandchild.
My sister in law was struggling with asking him if he wanted to remove the tube since at first he didn't want it but she was scared he was too weak to even give an answer. This morning , after talking to a counselor, she found the courage to ask him. Again, HE made the decision to keep the feeding tube.
Many people would view his decision as stupid much like our decision to have another child. Obviously, I am inspired by both he and his wife. They have more courage than I can imagine. He has chosen to live , trapped in the prison that is his body. While he is unable to communicate his reasons, I believe it is out of love. His love for his wife and family and knowing that his passing will be more than diffficult for them. By the same token, his wife has stood by him, cared for him non stop under the most difficult of human conditions. Why ? Surely love...but also courage. Almost 100% of the time, someone or more than one will tell the spouse of a PWP to run.....because the way is difficult, painful, ugly, debillitating and devastating.
How much courage is that ? Immeasurable. Inspiring. Awesome.
Those of us with PD or any other chronic, fatal disease are lucky if we have spouses like my sister in law and my wife. I can only hope to be as courageous as my brother one day.
I have wanted to be like him since we were kids and have always looked up to him. It would appear that we have a lot more in common than we may have thought and I STILL look up to him..................
For instance, when I was diagnosed with PD we were eight months pregnant with our daughter Rielly-Anne. Most would agree that having a child at fifty years old took courage on my part. Many would say and have in fact said it was stupidity.
A few years later, when we decided to have another child , it was difficult to find anyone who didn't think it was a stupid or reckless decision. Now, with Cecilia almost two years old, while challenging, it most certainly was not stupidity. It was carefully considered, planned for, and has brought us much joy and happiness. Was it courage ?
Yes. The courage to live our lives in spite of PD. The courage to break from tradition. The courage to begin something without knowing how it will end. The courage to begin something knowing certain things would likely happen. But not stupidity.
This week my oldest brother who has PD+MSA ended up in the hospital. Infection, very weak. He has a catheter, a feeding tube, can't speak or do anything else for himself. When I saw him the other night, I felt sure the end was near. His wife was very upset and felt the same way.
All I could say to him was that I loved him, take it easy and relax, and I told him if I could I would take his place. It broke my heart to see him in such a horrible condition.
When I talked to my sister in law, she felt guilty because she talked him into the feeding tube over a year ago when he initially did not want one. She felt she had prolonged his suffering. In reality, HE made the final decision, not her. And in doing so, he was able to be around to see what is likely his last grandchild.
My sister in law was struggling with asking him if he wanted to remove the tube since at first he didn't want it but she was scared he was too weak to even give an answer. This morning , after talking to a counselor, she found the courage to ask him. Again, HE made the decision to keep the feeding tube.
Many people would view his decision as stupid much like our decision to have another child. Obviously, I am inspired by both he and his wife. They have more courage than I can imagine. He has chosen to live , trapped in the prison that is his body. While he is unable to communicate his reasons, I believe it is out of love. His love for his wife and family and knowing that his passing will be more than diffficult for them. By the same token, his wife has stood by him, cared for him non stop under the most difficult of human conditions. Why ? Surely love...but also courage. Almost 100% of the time, someone or more than one will tell the spouse of a PWP to run.....because the way is difficult, painful, ugly, debillitating and devastating.
How much courage is that ? Immeasurable. Inspiring. Awesome.
Those of us with PD or any other chronic, fatal disease are lucky if we have spouses like my sister in law and my wife. I can only hope to be as courageous as my brother one day.
I have wanted to be like him since we were kids and have always looked up to him. It would appear that we have a lot more in common than we may have thought and I STILL look up to him..................
Monday, April 25, 2011
WHILE YOU SLEEP.......
While you sleep.....I lie awake. Yet, dreaming all the same. Dreaming of the escape sleep offers my body for a few hours.
While you sleep.....I lie awake. Looking at you and the girls, listening to the night sounds that are made by you all.
While you sleep.....I thank God for the day, for you, for our children and ask him for a new day, each day a gift.
While you sleep......I try not to forget. The smallest detail. But I know I will ...it happens more than I likely know.
While you sleep......I sometimes try to forget. How good normal can feel. What has been lost. How time flies.
While you sleep.....I fear the future and what it may hold. Reminding myself that God is in control.
While you sleep.....I pray. Usually not for me. But for others who need God's blessings more than I. And I know you pray for me.
While you sleep.....
While you sleep.....
While you sleep.....
While you sleep.....I lie awake. Looking at you and the girls, listening to the night sounds that are made by you all.
While you sleep.....I thank God for the day, for you, for our children and ask him for a new day, each day a gift.
While you sleep......I try not to forget. The smallest detail. But I know I will ...it happens more than I likely know.
While you sleep......I sometimes try to forget. How good normal can feel. What has been lost. How time flies.
While you sleep.....I fear the future and what it may hold. Reminding myself that God is in control.
While you sleep.....I pray. Usually not for me. But for others who need God's blessings more than I. And I know you pray for me.
While you sleep.....
While you sleep.....
While you sleep.....
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