Hope is tricky; I believe it can be misunderstood. Hope is not just a wish that things will turn out ok, hope is hard work it requires critical thinking, a goal, a plan, and guidance from God. I believe that hope doesn’t always turn out how we want, but I think that if we open our minds and look hard enough past disappointment and grief we can see a positive outcome.
ALS causes us to grieve, and not just after death, but all along the journey for all different kinds of things. It is a family affair but yet the grief is different for everyone. The person we love living with the disease is grieving the loss of control of their body and independence and much more, we as family and friends are grieving the loss of control in being able to do anything to prevent the progression or outcome of this disease. Despite the grief and disappointment there is hope.
We set our goals as a team, like when Bert’s thumbs stopped working enough to push down on nail clippers; the goal was keeping a good pedicure (that’s my fancy way of saying cut toenails). At first it was a pin prick of panic that something so simple was lost, but after a minute of disappointment and a growl at ALS we decided that it wasn’t worth being sad about, we looked for the positive which from my view point was that Bert would have very nice toes if I was the one giving the pedicure. The first time wasn’t exactly smooth, actually it turned into a little fight…I tried to use the nail scissors my way, and Bert was yelling that I was hurting him, he would not let me finish the pedicure and I got slightly agitated and told him to forget it, he would just have to have long toenails if he was going to be “noncompliant” with my care (that’s the term we use in nursing when the patient doesn’t do what we think is best for them). A few days later I apologized and we tried again, I was a little more gentile and he was a bit more cooperative and his toes look great now. What is the hope in nail trimming you might ask? Well the hope is that we can take a loss, grieve that loss, and make a plan to work through it, communicate with each other and come out with a positive on the other side. The trimming of nails might not seem like a big deal, but it is just one of the many things that people living with ALS lose control over doing themselves, their way, when they want. And for those of us that are the caregivers, it is also a loss because we don’t want to see anyone we love suffer loss.
It’s just an example of Hope, at least our version of it. ALS takes, but you can defeat it by continuing to have Hope. Always step back and say a little prayer, ask for help to Hope. When a loss presents itself talk about it, communicate that pin prick of panic, that loss, grieve it, and then set a goal. The goal is going to be what you want your outcome to be, it is somewhere between the impossible and the sure thing. You need a motivator something to drive you towards the goal, which for us is our love for each other, our children, our family, and our determination, but it can be different for everyone. And finally the plan, the plan is really the journey to find the positive. Once you find the positive then you have kept Hope alive. Hope is by definition the expectation of fulfillment or success. As for my family we grieve small things frequently, but not for long and then we have high Hopes and find the positive, this makes the successes that much better. Sometimes the grief is hard and takes longer, be patient, allow yourself time, we allow each other time, then when we are ready we communicate and set the goal and decide on our positive which is sometimes difficult to find, sometimes the positive takes creativity (kids are good with creative positives), but in the end never ever lose HOPE, as it is the only thing stronger than FEAR.
“Let your hope make you glad. Be patient in time of trouble & never stop praying.” Romans 12:12
ALS causes us to grieve, and not just after death, but all along the journey for all different kinds of things. It is a family affair but yet the grief is different for everyone. The person we love living with the disease is grieving the loss of control of their body and independence and much more, we as family and friends are grieving the loss of control in being able to do anything to prevent the progression or outcome of this disease. Despite the grief and disappointment there is hope.
We set our goals as a team, like when Bert’s thumbs stopped working enough to push down on nail clippers; the goal was keeping a good pedicure (that’s my fancy way of saying cut toenails). At first it was a pin prick of panic that something so simple was lost, but after a minute of disappointment and a growl at ALS we decided that it wasn’t worth being sad about, we looked for the positive which from my view point was that Bert would have very nice toes if I was the one giving the pedicure. The first time wasn’t exactly smooth, actually it turned into a little fight…I tried to use the nail scissors my way, and Bert was yelling that I was hurting him, he would not let me finish the pedicure and I got slightly agitated and told him to forget it, he would just have to have long toenails if he was going to be “noncompliant” with my care (that’s the term we use in nursing when the patient doesn’t do what we think is best for them). A few days later I apologized and we tried again, I was a little more gentile and he was a bit more cooperative and his toes look great now. What is the hope in nail trimming you might ask? Well the hope is that we can take a loss, grieve that loss, and make a plan to work through it, communicate with each other and come out with a positive on the other side. The trimming of nails might not seem like a big deal, but it is just one of the many things that people living with ALS lose control over doing themselves, their way, when they want. And for those of us that are the caregivers, it is also a loss because we don’t want to see anyone we love suffer loss.
It’s just an example of Hope, at least our version of it. ALS takes, but you can defeat it by continuing to have Hope. Always step back and say a little prayer, ask for help to Hope. When a loss presents itself talk about it, communicate that pin prick of panic, that loss, grieve it, and then set a goal. The goal is going to be what you want your outcome to be, it is somewhere between the impossible and the sure thing. You need a motivator something to drive you towards the goal, which for us is our love for each other, our children, our family, and our determination, but it can be different for everyone. And finally the plan, the plan is really the journey to find the positive. Once you find the positive then you have kept Hope alive. Hope is by definition the expectation of fulfillment or success. As for my family we grieve small things frequently, but not for long and then we have high Hopes and find the positive, this makes the successes that much better. Sometimes the grief is hard and takes longer, be patient, allow yourself time, we allow each other time, then when we are ready we communicate and set the goal and decide on our positive which is sometimes difficult to find, sometimes the positive takes creativity (kids are good with creative positives), but in the end never ever lose HOPE, as it is the only thing stronger than FEAR.
“Let your hope make you glad. Be patient in time of trouble & never stop praying.” Romans 12:12
