In the past few months, I’ve gradually come to understand that an equal part of Mary Elizabeth’s recovery is not only how she’s changed since the stroke, but how I’ve changed and how we’ve all changed. At the same time, I’ve noticed some reconstitution in our base of friends – with some becoming more involved (thank you) and some less involved (I understand).
As the pace of Mary Elizabeth’s recovery slows down, there’s obviously less to report and consequently fewer posts to this blog – because I’ve tried to remain steadfast to the original intent of this space – to report on Mary Elizabeth’s condition and recovery.
While we were in London, it was a day-to-day story (sometimes hour-to-hour), but after we returned to New York and settled into our new life, the pace of things slowed down. Paradoxically, as the future started to stretch out before us, and the realization gripped us that this was the rest of our lives, staying positive and hopeful has become more of a challenge. As chief bottlewasher, nobody feels this more keenly than I do – trying to balance the demands of a busy family life and challenging career – while keeping an eye on the horizon, where hope sometimes seems to be setting instead of rising.
Recently I’ve been getting a lot of advice to make taking care of myself a priority. I’ve attended a few caregiver support groups – in fact one has a picture from the airline safety card of a parent putting on their own oxygen mask before their children. Intellectually – and practically – it makes total sense to ensure that the caregiver is in good enough condition to continue his or her responsibilities.
It should be an easy thing to switch focus to myself – I’m tirelessly (and perhaps tiresomely) introspective these days – but it’s harder than I thought. After focusing relentlessly on Mary Elizabeth, her needs and ongoing care since December 2009, I admit to feeling a little bit guilty focusing on myself.
I’ll bet it’s not uncommon (and any of you caregivers reading this, please chime in) for the those providing care to fade a little bit into the background and to neglect their own needs in favor of their caregivee. In fact, for those in long-term situations, I’ll bet that it can even become a challenge to maintain a separate identity from the person for whom they’re caring.
This change in identity can happen in wonderful ways though – like in a marriage. In the 18 years since our wedding, Mary Elizabeth and I have easily maintained our own identities and lives – but I think our identities have merged in a way as well. We went to a wonderful wedding this Saturday in Connecticut and part of the ceremony had the bride and groom weave three threads together (God, Groom & Bride) into one cord to convey unity and strength.
However, the challenges of identity and roles in our family have shifted, and we need to pay attention to that to make sure we are all where – and who – we should be going forward.
So as we’re feeling our way into the future, and evolving into a new pattern of love and life, I’m going to make sure that I maintain some focus on myself, my needs and my identity.
Anyway, so enough about me. What do you think about me?
Moved in Sundry Places 
Dear Scott,
I thnk of you every day. I left a couple of phone messages last month but figured you were too busy to get back to me.
What are the things that you crave right now: Drinks in the city, dinner out by your place, me bringing dinner to your family. Someone to watch your family while you go off for a long weekend? Why don’t you post a “Scott wish-list” of all the things you’d like to do on your blog, and then all of out here reading and watching and wondering what to do, can follow-up with you!
Love David
I think you are honest and courageous also a man that loves his wife and family very much! I agree with your friend David; post a Scott wish list and let people know what exactly you need! You need to take care of yourself before you can take care of your family, it certainly is not selfish but it is certainly a necessity for you balance.
I think a Scott wish list is a great idea!! Please do it. It will give your friens some concrete ways in which to show our support for you, MEB and your family.
David’s idea is excellent and extremely practical!
As hard as it is to make oneself a priority, it is good to do so at times. And it’s very difficult not to feel guilty. We were raised in an environment where there was no such concept as “me time” and people didn’t ask “but what are you doing for you?”, so it seems alien to think this way. I know it sounds like a platitude, but you will be able to take better care of your family if you take care of yourself.
I agree on the Scott wish-list!
I also thought you might find this link helpful: http://dontloseheart.org/ It’s for an organization founded by Jean Fogelberg, the widow of Dan Fogelberg. We met her last summer in Maine when we adopted her cat Phoebe. In addition to caring for her husband, she also cares for members of her extended family and started this on-line community to support caregivers.
You are wise to recognize how important your health and well being is to Mary Elizabeth and your family. I have had two elder family members who faced similar challenges. Each of them had their own way of taking care of their own needs. One had a stand-in caregiver once a week, and he would go to theater or the race track or just sit on a park bench for awhile. At first he felt guilty about it, but I think he quickly learned how those short “me” breaks made him stronger for all the other times.
Don’t be afraid to ask (me, or others) for help when you need it. And I’ll keep you, your wife and your family in my prayers.
I hope lots of people with experience of caring for others get back to you on this. I hope and pray that sharing your experiences with those in a similar situation will help dissolve away those guilt feelings you mentioned soon enough! It doesn’t carry much weight if you hear it from someone like me. Wishing you serenity, courage and wisdom always.
Hi Scott,
I have just read your story on DLH and your post M.E. and Me, you are a wonderful caregiver, husband, father, and bottle washer….. Your journey has been a tough one, and as you said is a new way of life. I am a caregiver to my 91 year old mom and physically disabled husband, and part time caregiver to my mentally disabled nephew. Working full time is the hardest role I have at the moment. I will continue to follow your blog, you have inspired me today… thank you, for taking a life changing situation and helping others.
Prayers and good thoughts for all of you today, you have a beautiful family.
Hello to M.E.
~Char
It’s also very difficult for the person receiving the care. Your loved ones doing things for you that at one time was easy for you to do, Simple things like opening an envelope or a bottle of water, not to mention, putting on a pair of socks. These people know deep in their hearts, that the care givers truly love them, but also hope they dont come to resent them. Hang in there Scott, and do take time and care for yourself. You are all in my prayers. Your children are a delight..Love, Nurse Nolan
Go for it Scott. Not only do you deserve some time for yourself but you need it too. Take some time for yourself, it will refresh you!