The things I miss most are the things most folks take for granted.
I miss a walk down the street holding hands.
I miss hugs, real standing up hugs.
I miss snuggling in bed and making love
I miss doing things spontaneously
I miss not having to find out about accessibility everywhere we go
I miss being normal
I hate doing transfers more than anything else. There is always the possibility of a fall.
I hate feeding Steven
I’ve never enjoyed driving and now I have to do it all the time
I hate being "on call” all of the time
I wonder what our lives would have been like if Steven hadn’t been diagnosed with multiple sclerosis in 1974. I wonder what decisions we would have made if we didn’t have the cloud of the diagnosis always hanging over us. Perhaps we wouldn’t have bought our first house. We bought a ranch not knowing if Steven would lose the ability to walk stairs. But if we hadn’t bought it, we never would have met Paul who lived next door and changed my life with his friendship and wise advice. Not having parents nearby Paul acted as a surrogate dad during those early years when I was trying to come to terms with having MS in our lives.
Because of the pre-existing condition clause that existed in health insurance when Steven was diagnosed his career path was pretty much set. He was with the federal government at the time and so with the federal government he stayed for almost 40 years. Who knows what he would have done or where we would be living if he had the flexibility to chart his own course. But they say "God works in strange ways” and so because he was in essence forced to stay "a fed” all those years we are now enjoying the security that comes with a lifetime government pension.
I’ve been a caregiver for so many years now and I anticipate being one for at least another dozen years or so. I wonder if I can do it. I’ve aged and feel its effects. Steven has aged too of course and the MS with the persistence of a dripping faucet keeps degrading his functionality to the point where he can hardly do anything himself. Thank heavens it hasn’t affected his mind.
I really shouldn’t complain. We have a good quality of life because of Steven’s pension and good investments we made over the years. We’ve been able to afford some paid help and high quality equipment. We live in a beautiful neighborhood and in a lovely house that has been renovated for complete accessibility. Our friends and neighbors are very helpful and best of all, our daughter and her family live nearby. They provide support and help and we experience the sheer joy of being part of our granddaughter’s everyday life. We truly are fortunate, and yet I wish I wasn’t a caregiver. I find I am tired most of the time.
But it is because I’ve been a caregiver for most of my adult life that I’ve been able to bring attention to the needs of the millions of other caregivers in our country. When I look back on the progress that has been made since I co-founded the National Family Caregivers Association in 1993 and how we’ve gone from being a nation that had no idea of who caregivers were, what work they did and what struggles they endured to seeing family caregivers being part and parcel of the new patient and family-centered approach to healthcare. I think of my effort in support of family caregivers as the good that has come from the presence of MS in our lives.
I think of the educational materials the organization created and all of the confidence building talks I gave. The letters I received attesting to the positive difference I made in other caregivers’ lives brought me great joy and satisfaction. I know I had, and continue to have, an impact on legislation, and public policy and the lives of individual family caregivers.
And I know that none of this would have happened if Steven didn’t have MS and I didn’t experience what I have as his caregiver. It is impossible to know where life will take us, what direction our lives will take either because of very specific actions on our part or by chance. His having MS has been a mixed blessing. Yes our lives have been harder but more enriched as well. Happenings are rarely black and white.
And yet I am angry because of what the MS has taken from us and I miss what I think a normal life could have been like.
I know I need a vacation from caregiving.
Social entrepreneur, family caregiver thought leader, author, speaker, advocate - 20 years ago she put a face on the issues of family caregiving when they were not recognized outside the aging community. She co-founded the National Family Caregivers Association (now Caregiver Action Network) and led the charge for recognition of family caregivers across the lifespan and as critical players in the delivery of chronic illness care. She retired from the organization in June 2013 and now run her own consultancy: Family Caregiver Advocacy, where she focuses on issues of national importance that affect the health and wellbeing of family caregivers. Ms. Mintz is currently working on the need to have family caregivers identified on medical records, their loved ones’ and their own. Quote: "Family caregivers need to be included as members of their loved ones’ care team, given the education, training, and on-going support they need to bring about better outcomes and their own health and wellbeing.