ALS puts us through the wringer. It chews us up and spits us out. Then goes back for seconds. Not only does it do this to the afflicted, but it spares not even the loved ones. This is what I want to address, today.
The angle I am focusing on is that of the relationship between couples. I am sure it could be applied to family member/caregiver roles, but I am looking through the lens of husband/wife, boyfriend/girlfriend, partners, what have you. These relationships have unique implications when it comes to this kind of circumstance.
ALS has truly put my marriage to the test. Thankfully, I can say that we are faring fairly well. We have faced some tough obstacles together over 20 years of marriage. None as high a hurdle as this. We all know the phrase “Til death do you part.”. I never would have expected that it would be sooner rather than later. That, in and of itself, is a tough pill to swallow. We are all on borrowed time. On any given day we can be called to heaven. But there is something more difficult to accept about knowing that the person you have devoted your life to is dying while you can just watch with nothing you can do. How does one reconcile the emotions that come with that?
There is the physical aspect. As physical abilities degrade, the relationship starts to shift to the patient-caregiver phase. The loss of independence and subsequent increase of reliance is daunting. I have had to come to grips with the fact that I have to depend on my wife to help me with a large part of my daily life. All the while knowing that she, in turn, has to come to terms with the idea of having to care for me much like a child. The man who was supposed to protect her and shelter her.
Along with the losses come the struggles. The struggles of letting someone else do everything for you. It’s a battle. I can be a stubborn individual. I admit that it isn’t easy to have someone do things for me. Not just because of my pride, but I like things a certain way. That is tough on both of us. You think you really know your partner? Be a caregiver in this kind of circumstance. It can be a rude awakening! We are learning every day. I am having to learn how to be a better recipient and she a better provider. I won’t lie. She is far better than I am. Plus she is sitting right here by me within arms reach so I must play nice. Haha!! In all seriousness, I am lucky to have her caring for me.
All of these challenges take a toll on us emotionally and have an effect on intimacy. It is imperative to have a solid foundation in both of them. They are part of the base of a strong relationship. The strain on them has been great. I believe that it is far harder to overcome than the physical challenge. It requires excellent communication and a deep love. Many relationships crumble under this weight, sadly. I have heard of marriages dissolving due to the circumstances. And still more devolve into little more than a responsibility. We continue to walk side by side, though. That is probably our strongest attribute. I pray that it will continue to be.
We still have a way to go. Our resolve is strong. ALS tests our limits daily. But when the dust has settled and my battle is done, I am confident that we will be able to stand with an outstretched arm, hands up, middle finger extended.