by Jo-Ann Goldstein

Every family is different, just as every progression and loss of function is different for each person with ALS. But we all face role changes, both as a person with ALS and as a caregiver.

Unfortunately, Sam’s disease progression has been rapid and he now has no movement and very little speech. So, these thoughts are from my viewpoint. But we did discuss many of these feelings over the past two years and I know that I speak for him on some issues.

The biggest change we have had was for Sam to become the “taker” instead of the “giver” in the family. He had owned his own business and was used to doing for others, being the main supporter for our family and those of his employees. He was the one everyone called to ask about their cars (his business), music (his passion) or trivia questions (his phenomenal memory). Being able to always help others gave Sam great satisfaction and really defined who he was. Switching roles to become the one that others helped was an extremely difficult adjustment that took months.

Through the help of a counselor, we both became aware that allowing others to give was a gift in itself. Trying to repay them was disallowing them the ability to be the giver. Let someone help you in and out of the car, let them bring in meals. We all know how good it feels to help others, so learn to accept the help.

Adjusting to changes was, for us, a depressing downslide. Many have years to adjust to using a power chair, traveling in an accessible van or using their brand-new accessible bathroom. Sam’s decline was so quick that he only used the bathroom two months before it just was too tiring, the van only has 1,500 miles on it and the power chair just isn’t comfortable any more. We went from enjoying the new tools to seeing them unused. Learning to prioritize what is important is a constantly changing role for each of us.

Guilt — that small word has such a big effect on our lives. Sam constantly was saying “I’m sorry for what you have to go through.” I think it was the first time in our 36 years together that he ever felt guilty about anything. I, on the other hand, have grown up feeling guilty about everything. As a caregiver, my guilt has centered on being healthy, being able to walk and go to work, even the smallest things like eating with a fork and scratching my nose. I feel guilty — even though I know I shouldn’t — about not being at Sam’s side constantly to do what he wants or needs, guilty about going to the park with our grandchildren or visiting them at school.

Denial, frustration and anxiety play huge roles for each of us. I had a lot of frustration when Sam refused to accept losses, such as the ability to work or to use a walker. My role became one of a bad guy. I had to be the one to say “no, you can’t do that anymore.” I hated being the nag, but it had to be done to assure his safety. It can be difficult to convince a person with ALS that using aids like a power chair and a lift actually increase your independence. It‘s all part of learning to live with ALS.

For me, the biggest role change was becoming a nurse, in addition to wife, mom and grandmother, and professional. I always said that the last thing I ever wanted to be was a doctor or nurse — I hate needles. But, since December 2006 when Sam got his tracheostomy and went on a ventilator 24/7, I’ve become an expert at suctioning, changing the trach, understanding the vent’s operation, giving medicines and even shots.

Another recent new role for me has been being Sam’s voice — to his doctor, nurses, family and friends. For someone who always was talking, telling stories and jokes, this change has been extremely frustrating. I try to convey his feelings and words as best as I can, but it’s not always successful. I’d recommend that each family talk early on about the important medical decisions that need to be made, when you’re not in crisis, so that everyone is on board with your choices.

Last, don’t forget to take care of yourself. If we don’t take time to enjoy ourselves — whether it’s gardening, exercising, reading, or going out with friends — we’ll be run down and feel too much anger at our role as a caregiver. It’s a full-time job and everyone needs a break.

My message to everyone is that we can change — we can do what we need to do when crises arise. To answer the question that I hear most often — “How do you do it?” — I say that it’s done out of love, that it’s my turn to be the caregiver. We don’t know what life has in store for us, but we can learn to handle situations with the help of family, friends and the support of the many wonderful charitable organizations. We don’t have to deny the anger, exhaustion, fear and all the other feelings that we all feel — but we can deal with them, get beyond them, and not be all-consumed.

(Reprinted from the MDA/ALS Newsmagazine, November-December 2007)