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Expert Blog

Gift of Time

August 12, 2016

I have finally gotten myself up and out of the house for things other than grocery shopping, herding the kids to and from activities and any other mandatory obligation. There have been numerous times I have been asked to come out, join friends for drinks or dinner or something social, and I have not. I have submerged myself under my comforter, into a blackness of self-pity, of heartache, of grief. I have slept. Then I have slept some more. Then I have gotten a shower and done the bare minimum necessary to classify as parental fortitude, and then I have gone back to my safe hideaway and closed my eyes and tried not to remember all that has happened. I have put on nearly 10 pounds. I am not sure how since there have been days I have eaten little more than a banana, some juice and a few beers. I suppose the hours whittling away with barely registering movement have not helped.

So, I have come part way out of my fog and have started walking. The first few days I was in so much pain I could not sleep for 3 nights. Amazingly, I had been so lethargic, my muscles were sore from walking a few miles. I could not find a comfortable way to lay in the very bed I had become married to over the past few months. I know I have to start easy, but this was ridiculous. My ankle has finally healed enough that I think I can start running again. I sprained it when I fell down the stairs shortly after I got the call letting me know Jim was actively dying. So my excuse to not exercise started immediately. It carried through as I sat idly by his bedside. I was told to rest. I was enabled to become a person barely moving and in return my body and my brain have grown soft. My mind, foggy, overwhelmed, in need of re-wiring, has struggled for words, for clarity, for normal functioning.

Personal loss takes a toll in so many ways. Emotionally, financially, and physically. It seems in order to get one on track, you must work on all of them together. In order to work on the physical part, you must have the emotional ability to actually do something. In order to be emotionally ready to exercise or at least get active again, you must be able to find (or make) the time and you must have the financial means to either go to a gym, hire a trainer, or take time off of work. You must also not be so stressed over finances you can’t motivate yourself out of bed, or off the couch or out of that chair you have molded yourself in to.

Part of the reason I am able to do this is my own inner strength. This comes from parents who have always helped me be strong (and I know it was quite a challenge when I was younger). I am also able to because Jim told me long ago to do what was best for me and the kids. And then the kids are the main reason I am able to get myself somewhat together. I am nowhere close to where I need to be, or should be, but they are a driving force to help me even consider getting back on track.

It takes a lot of self motivation to pull yourself together when it is socially acceptable to fall apart and to stay in your own funk for a long time. But it doesn’t do anyone any good. It won’t bring Jim back. It won’t help me. It won’t help my kids.

This doesn’t mean I am back to me. I don’t even know who “me” is anymore.

We were recently doing an interview for a documentary coming out this Fall on PBS. One of the questions the kids were asked dealt with a change in me. Frances, our oldest, recalled the Mom who always wanted to do stuff and the Mom who was fun to be around. Brad did not recall this mythical parent. All he remembers is the Mom stressed about money, stressed about Dad, stressed about everything. He can’t remember me being anything other than a caregiver for a father who was dying. That struck me. What a difference 3 years makes. She was born three years before him and was given the gift of time.

Now it is up to me to cherish the gift of time I have been given. I feel guilt. I am still alive, and I am witnessing Frances driving. I am spending time with family and friends that Jim didn’t get to. I am watching movies and hearing music that he will never know. I was there to hear the cheers as Brad hit his first home run. Each day I get to do something he would have enjoyed and things he desperately wanted to be part of. I must let myself cherish the moments and know I am the lucky one. I don’t know how or why but I am the one left behind to raise the kids and carry on the message of Alzheimer’s research, support and education. It is up to me to not waste this gift of time. We are all given a gift of time but it is difficult to appreciate this gift during times of sadness, guilt, bitterness, anger and loss. Time can either help you heal or it can drag on endlessly with no reason to smile in sight. Ultimately it is up to each of us to make our own reasons to smile, regardless of who we are sharing our life with. Regardless if the person we are caring for knows our name. Regardless of the fact they no longer can care for themselves and must depend on you for everything. One day they won’t. And you will still have time to be you. To find you again. To smile and laugh. All in good time….

Thoughts and stories from others

  1. August 16, 2016 at 12:14 pm
    Posted by M. Shotts

    Just try to visit everyday at different times. Make friends with the staff, bring cookies. Participate in his care, ask questions. You can still be very much involved, yet sleep at night. Put photographs around the room for people to talk about. Love and hugs to you both!
  2. August 15, 2016 at 04:17 pm
    Posted by L.H.

    Karen, Thank you for sharing this raw emotional struggle. I appreciate your honesty. It shows people that they are not alone in this roller coaster of emotion that is caregiving. I can't even imagine what you are going through but know you are doing the best you can with what you have been given. I will keep praying for you and your family as you continue to grieve Jim's loss. You are an inspiration to all who are caring for a loved one with this horrible disease. You are making an impact by telling your story. Thank you! L.H.
  3. August 15, 2016 at 04:10 pm
    Posted by Joyce Cotto

    I am grieving over the fact that I had to move my husband of 51 yrs to a Nursing facility....I have cared for him for 7 yrs & could not continue on...now I am weepy & sad everyday & when someone asks about him I cry.....does this feeling ever stop?

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