Caregiver Perspective: Joy Comes in the Morning
Many of my blogs focus on the feelings of loss, anger, fatigue, and the negative side of caregiving because that is what we caregivers find to be the most difficult to manage. It’s much easier to cope with happiness and being well-rested. But today I want to talk about “acceptance,” the final stage of grief and loss. Acceptance is when you stop fighting the loss and have learned to accept life as it is…today.
Acceptance for me is not being happy that my spouse can no longer work in a public job or that I am glad that I have total control of our finances, how things get done, when they get done, or if they get done. I am not happy that Lynn cannot walk, that he cannot feed himself, or dress himself, or tolerate almost any activity more than a few hours. I am not happy about these things but neither am I angry or depressed about them…at least not today. You see, the thing about grief and loss is that you never really finish going through the stages. Any new change in my own status or Lynn’s can take me right back to where I was initially. It does not last as long because I know better how to cope with that stage but I still have to deal with the emotions. Going backward for a short time does not mean I have failed at dealing with that stage previously either; it just means there is some new situation or concern that I have to deal with today.
Sometimes, I think that others see acceptance as giving up or being happy for the situation but I don’t see it that way. I will never give up on trying to make sure that Lynn has as much function as he can have with his physical constraints. I will continue to watch his diet, help him with exercise, and check out every skin patch that is red or irritated for skin breakdown. I will read articles on the latest way to help with xyz. I will be encouraging that with diet and exercise he will feel better one day and could regain some functionality even though I might believe it myself because he needs me to be encouraging. I have accepted that he has MS and that our lives will never be the same as they once were and I’m okay with that. I’ve learned to accept my situation and be content in it.
I accept the fact that I’m not going to get the amount of sleep I need each night and will feel tired most days. I cope with that problem by taking in protein and carbohydrates for energy and I know that I need caffeine periodically throughout the day. I have also learned that I can take a 30 minute timed nap (i.e., I set an alarm) and it will restore my energy level.
I accept the fact that I cannot leave the house for extended periods of without someone staying with Lynn. I can make a quick trip to the grocery store or pharmacy by making sure immediate needs are met until I return. However, there is too much risk if I leave him alone longer than that and I NEVER leave him alone in the bed. If the house was on fire, he could not help himself and I could not live with myself if that happened; he at least needs a fighting chance to escape. I accept that I must plan to get what I need when I go into work once a week and his companion is here to stay with him. I hired someone to help him write his books (he’s an author) and she comes in 2-3 days a week which allows me to meet the demands of my job.
I accept that Lynn cannot embrace me but that we are intimate in mind and spirit. I accept we cannot travel but we have found other ways to enjoy entertainment and our friends and family come to us to celebrate. I accept that we cannot go watch my grandson’s ballgames or go to his house to see him Christmas morning but we adapt with my daughter posting pictures of all events for us to enjoy on Facebook which is really no different than how long-distant grandparents take part in their grandchildren’s lives.
I accept that life is hard; that we must do things differently from others; that MS is not curable but it’s manageable and that management of it is only as good as our ability to defend against all the potential assaults that could change his fragile stability at any moment. I accept all that and we are happy. We enjoy each other. We have our “normal” and it works for us. I hear all the time that we are an inspiration but I don’t see why that is…we just do what we have do to make our life work for us. And, it works.
Joy really does come in the morning if you give it time and realize that joy comes in many shades and in many ways.
Do you celebrate your MS Anniversary?