Looking outside, I see some new orange and yellow colors where last week I saw green. There is a sporadic fluttering of leaves cascading in front of the window on their way to cover my yard. The air is crisp causing me to need to turn on the heat this morning so Lynn would not be too cold today. It seems that summer is definitely over.
Working from home now so that I can care for Lynn, I find it hard to really be part of the seasonal changes. I wear the same scrub suites all year. I am only outside a very few minutes at a time usually so I can always be in earshot of Lynn’s call for help or need to be catheterized so the usual changes in temperature do not trigger time moving on as they did when I went into work each day. Therefore, it seems at times as if I am a spectator of life rather than participating in the changes. I find it difficult to “know” instinctually what month it is.
I think about when I worked as a nurse years ago, I used to ask patients, “what is your name, what month is it, and who is the president?” Honestly, there are times I think the only one I could answer correctly is my name! My world is focused on keeping up with my daily demands moving between being a caregiver to an employee within minutes of each other and that transition occurring hundreds of times a week. After a while, I’m so focused on trying to stay in the “here and now” that I am not aware of what’s going on around me.
Lynn listens to Fox news in the morning so I usually hear a little about what’s happening in the world as I assist him in his morning routine but after that, I rarely know what’s happening outside of my small world unless a family member emails me a question or shares a comment. I have to consciously strive to stay in the “here and now” both at home and in the world around me. It’s very tempting to just stay in my little world. I have plenty to do to keep me occupied if I did that. But….is that the right thing to do? I have to say, “not.”
It’s easy to become isolated when you are so busy caring for one person; after all, they are the center of your world. When that happens, however, I think that the “person” gets lost in the process. It takes extra effort but keeps establishing my “personhood” apart from caregiving responsibilities but I think it’s important to do so. I “lost” myself in my first marriage changing who I was and what I liked to be accepted and to try to save that relationship. I’m a “people-pleaser” by nature and it’s difficult for me to not just allow myself to blend in and go along with the crowd. But when I did that, as in my first marriage, once that relationship ended, I didn’t know who “I” really was.
When you give and give and give and set aside your own wants and needs, you tend to cope with the necessity of putting others first, by repressing your own inner desires and enjoyments. But then if the relationship ends either through a divorce, death, or just separation as people go in different directions, what do you have left? Sometimes, it’s not so clear. I remember a counselor asking me during the early days of my divorce what I liked to do and I honestly did not know. It had been so long since I had done anything just for my own enjoyment (other than reading occasionally) that I had no idea what I might want to do for entertainment that I would do with others. It took me a while to find “me” again; so I’m trying not to let that happen this time around.
That’s why I write this blog, to assert who I am and how “I’m” affected by this role. It’s why last week even though I needed to do so much at home, when my daughter said, “let’s getaway,” I said, “yes,” instead of, “another time.” It takes a lot more effort to get away than it would seem. Something always has to give when you do, but I think it’s also important to remember to let who you get free at times from being overshadowed by caring for others. Most likely, one day, I will not be a caregiver any longer and when that happens, I will need to know who I am so that I have “someone” to fall into. When that happens, I want that “someone” to be a friend; not a stranger.
As caregivers our world shrinks constantly and the demands placed on us keep increasing.
Sometimes it is just so overwhelming. And the guilt……but that’s another story.
Take care of yourself along the way as you care for others.
Donna, Sounds hard to b u, the constant giving of yourself is differcult. But want u 2 know I read your blogs & keep u n my thoughts. U r the brave & caring person I’ve alway known u 2 b. U take care of yourself & hope 2 c u soon, I’ll check w/your mom & dad when best time 2 visit u; mayb seeing older faces would lift your spirits ……LOL…. just remember I’m not that much older than u. Love U take care of yourself…..
Thanks for the words of encouragement. IT would be great to see you sometime. Take care!
Hi Donna, I have been reading your blag for sometime now and I always look forward to the next posting. A little over three years ago my husband had his first “episode.” We are still waiting for an official diagnosis, however his nuroligist has told us he is sure it is MS. (He just doesn’t have enough lesions. Which is a good thing.) He has continually been going down and was even thinking the time was approaching where he would have to retire. However, this past July he was introduced to an all natural supplement that is doing wonders for him! I am sure people try to get you to try new things all of the time. I have put off writing this but as I see improvement in my husbands condition and others are asking what he is doing because his energy is so much better and even his balance, i felt compelled to write to you.
If you would like some information on this I would be more than happy to send it. And if you don’t I totally understand. You can send me a private e-mail if you would like.
Feeling blessed in Texas!