Perspective
It’s been a long winter. One of gloomy days and feelings of despair. I have not written in a while because I didn’t feel that I had anything very positive to say. I felt guilty for not living up to my own motto. I felt shame for feeling hopeless at times. I had to do some real soul searching and remind myself why I started this blog; and that was to tell the truth about this journey of ALS. I started writing so my children would have an account of what really happened so, they could look back one day and see how their dad and all of us faced adversity and came out the other side as better people.
I wondered many times in the past several months if it was possible to be both depressed and happy with life at the same time. Terminal illness is consent chaos, yet it brings with it periods of blank space. Terminal illness is lonely. ALS just keeps taking, nerve cells keep breaking down, muscle function keeps on deteriorating and before you know it the body succumbs and can no longer move. It’s hard as a caregiver to watch. Caregiving itself becomes routine, but with every loss a little part of my heart is broken as I watch the suffering. It has been very difficult to not be able to fix this, to not be able to take the pain both physical and emotional away. I am sad and angry at times.
I thought I could put my nursing scrubs on and do my job, only problem is I happen to love the patient. It’s been a lot harder than I thought because the reality is this is not my job, it’s my life and the life of my husband and my children. It has not been so easy to let go of what was, of what I thought would be; and when you have those blank spaces it is very easy to get caught wanting things to be different. Hopelessness can creep in and guilt builds. I journal-ed, I prayed, I created art, I ran and ran and ran; but I cannot out run ALS.
Bert lost his voice, it’s nothing more than garble. He speaks with a the tobii eyegaze computer in a computer voice. I miss his voice. I want to hear his voice again. He cannot use his arms or hands at all. No more hugs, no more hand holding, just floppy limbs. I want to see him hug our kids, I want him to hug me tight and pick me up and swing me around. I want him to be able to drive and run and bike and go to happy hour with me again. I want to snuggle in bed at night and lay the way we used to with the souls of our feet touching. I want him to sit on the edge of the kid’s beds at night, laughing at silly You Tube videos, what I wouldn’t give to hear him laugh. He sleeps in the living room now in a recliner so he can breathe, I sleep in bed by myself in what used to be our dining room; the kids upstairs. I hate that he is uncomfortable, swollen hands, floppy neck, stiff spastic legs with cramps and pain. I hate that he is short of breath. I hate ALS.
I hurt for my children. I wish that they did not have to witness their dad go through this. I wish I could scream from the roof tops what really goes on in our house. How my husband cannot safely drive his wheelchair because his hands no longer work, so back in September at clinic a crazy contraption called a head array was ordered so he could use his head to drive. How we waited till February while insurance and Medicare took their sweet time approving the ten-thousand-dollar piece of equipment and then when it finally came his neck didn’t work well enough either to drive it! How it wouldn’t have mattered anyway because after I spent a solid 45 minutes using the rigged caregiver control (a real one would have cost $1100.00 out of pocket) the chair wouldn’t fit in the van anyway! How after being stuck in the house for 3 days unable to drive the wheelchair and missing our son’s basketball games the chair got put back the way it was and we are just struggling with the old controls.
Or the time that I went through CVS drive through to pick up Riluzole the only drug for ALS that doesn’t even work but to extend life approximately 6 months and found out we had a co-pay of $170.00…how I cursed at the pharmacist even though it wasn’t her fault and cried as I took my daughter to choir practice and as she tried to calm me asked if dad would die sooner if he didn’t get the pills. Or the time we just made it to my son’s basketball game on time because I was holding my husband on the toilet while he cried in pain because of constipation and no longer having the muscle strength to take a shit. How I left Bert at home and Alex and I raced to the game and then we raced back home so Alex could sit with his dad in the bathroom while I ran out to get some medicine. I could keep going but I see that I just flipped over to page two and a blog is to be kept short or I will lose the reader. I have probably already lost the reader because quite frankly no one wants to hear about these depressing trials. Oh well, it's true to our ALS journey.
You know what else is true though? The happy part. I still feel happy. Is that totally crazy? I love my life. I love my husband and I love my kids. I am proud of us for living and making it through all that hard stuff and still being able to laugh even if it is with a computer voice. I feel grateful every day. When I wake up several times during the night to readjust and help Bert pee; I feel an overwhelming sense of gratitude for the time we have been given. I love when I am in the kitchen and I hear the kids talking to their dad. I love when they text inside jokes to each other during the day. I love to watch my husband beam when he gets to see our son score a goal or our daughter sing. I love that he still checks their grades and fills out all the school paperwork and pays their lunch accounts with his eye gaze. I am grateful for technology and the independence it provides. I am inspired everyday by others fighting this disease. We are happy even amid feeling sad sometimes. I have come to the realization that I needed to forgive myself for my shortcomings. I can’t always be the best caregiver. I am not the perfect parent, or wife; but I do my best, and that is enough. There isn’t always a silver lining and that’s OK. It’s OK to feel the hurt, that is part of living and loving. We still have Joy, in watching our kids grow and do their activities, spending time with family, watching the birds, snuggling with our dogs, keeping our secret inside sense of humor. It’s finally spring and the sun is coming out, the days are getting longer and flowers are starting to bloom. I am working hard to try an accept the unknown; I am not always successful, but that’s OK too. I know a positive is always there, somewhere; and sometimes it’s enough to just know.
xx Jennifer #alwaysapositive #gratefulalways
It’s been a long winter. One of gloomy days and feelings of despair. I have not written in a while because I didn’t feel that I had anything very positive to say. I felt guilty for not living up to my own motto. I felt shame for feeling hopeless at times. I had to do some real soul searching and remind myself why I started this blog; and that was to tell the truth about this journey of ALS. I started writing so my children would have an account of what really happened so, they could look back one day and see how their dad and all of us faced adversity and came out the other side as better people.
I wondered many times in the past several months if it was possible to be both depressed and happy with life at the same time. Terminal illness is consent chaos, yet it brings with it periods of blank space. Terminal illness is lonely. ALS just keeps taking, nerve cells keep breaking down, muscle function keeps on deteriorating and before you know it the body succumbs and can no longer move. It’s hard as a caregiver to watch. Caregiving itself becomes routine, but with every loss a little part of my heart is broken as I watch the suffering. It has been very difficult to not be able to fix this, to not be able to take the pain both physical and emotional away. I am sad and angry at times.
I thought I could put my nursing scrubs on and do my job, only problem is I happen to love the patient. It’s been a lot harder than I thought because the reality is this is not my job, it’s my life and the life of my husband and my children. It has not been so easy to let go of what was, of what I thought would be; and when you have those blank spaces it is very easy to get caught wanting things to be different. Hopelessness can creep in and guilt builds. I journal-ed, I prayed, I created art, I ran and ran and ran; but I cannot out run ALS.
Bert lost his voice, it’s nothing more than garble. He speaks with a the tobii eyegaze computer in a computer voice. I miss his voice. I want to hear his voice again. He cannot use his arms or hands at all. No more hugs, no more hand holding, just floppy limbs. I want to see him hug our kids, I want him to hug me tight and pick me up and swing me around. I want him to be able to drive and run and bike and go to happy hour with me again. I want to snuggle in bed at night and lay the way we used to with the souls of our feet touching. I want him to sit on the edge of the kid’s beds at night, laughing at silly You Tube videos, what I wouldn’t give to hear him laugh. He sleeps in the living room now in a recliner so he can breathe, I sleep in bed by myself in what used to be our dining room; the kids upstairs. I hate that he is uncomfortable, swollen hands, floppy neck, stiff spastic legs with cramps and pain. I hate that he is short of breath. I hate ALS.
I hurt for my children. I wish that they did not have to witness their dad go through this. I wish I could scream from the roof tops what really goes on in our house. How my husband cannot safely drive his wheelchair because his hands no longer work, so back in September at clinic a crazy contraption called a head array was ordered so he could use his head to drive. How we waited till February while insurance and Medicare took their sweet time approving the ten-thousand-dollar piece of equipment and then when it finally came his neck didn’t work well enough either to drive it! How it wouldn’t have mattered anyway because after I spent a solid 45 minutes using the rigged caregiver control (a real one would have cost $1100.00 out of pocket) the chair wouldn’t fit in the van anyway! How after being stuck in the house for 3 days unable to drive the wheelchair and missing our son’s basketball games the chair got put back the way it was and we are just struggling with the old controls.
Or the time that I went through CVS drive through to pick up Riluzole the only drug for ALS that doesn’t even work but to extend life approximately 6 months and found out we had a co-pay of $170.00…how I cursed at the pharmacist even though it wasn’t her fault and cried as I took my daughter to choir practice and as she tried to calm me asked if dad would die sooner if he didn’t get the pills. Or the time we just made it to my son’s basketball game on time because I was holding my husband on the toilet while he cried in pain because of constipation and no longer having the muscle strength to take a shit. How I left Bert at home and Alex and I raced to the game and then we raced back home so Alex could sit with his dad in the bathroom while I ran out to get some medicine. I could keep going but I see that I just flipped over to page two and a blog is to be kept short or I will lose the reader. I have probably already lost the reader because quite frankly no one wants to hear about these depressing trials. Oh well, it's true to our ALS journey.
You know what else is true though? The happy part. I still feel happy. Is that totally crazy? I love my life. I love my husband and I love my kids. I am proud of us for living and making it through all that hard stuff and still being able to laugh even if it is with a computer voice. I feel grateful every day. When I wake up several times during the night to readjust and help Bert pee; I feel an overwhelming sense of gratitude for the time we have been given. I love when I am in the kitchen and I hear the kids talking to their dad. I love when they text inside jokes to each other during the day. I love to watch my husband beam when he gets to see our son score a goal or our daughter sing. I love that he still checks their grades and fills out all the school paperwork and pays their lunch accounts with his eye gaze. I am grateful for technology and the independence it provides. I am inspired everyday by others fighting this disease. We are happy even amid feeling sad sometimes. I have come to the realization that I needed to forgive myself for my shortcomings. I can’t always be the best caregiver. I am not the perfect parent, or wife; but I do my best, and that is enough. There isn’t always a silver lining and that’s OK. It’s OK to feel the hurt, that is part of living and loving. We still have Joy, in watching our kids grow and do their activities, spending time with family, watching the birds, snuggling with our dogs, keeping our secret inside sense of humor. It’s finally spring and the sun is coming out, the days are getting longer and flowers are starting to bloom. I am working hard to try an accept the unknown; I am not always successful, but that’s OK too. I know a positive is always there, somewhere; and sometimes it’s enough to just know.
xx Jennifer #alwaysapositive #gratefulalways
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