Chip, Chip, Chip At Caregiver Hearts

Lynette Whiteman

Chip, Chip, Chip At Caregiver Hearts

Lynette Whiteman
Not sure if every caregiver feels this, but this past week, I came to a conclusion. My son is getting married in 2 weeks and I finally settled on a dress which was a major victory. My mom's aide, Pat,  who is a lovely, lovely woman heard me talking about it and asked me to show the dress to her. I brought it into my mom's room and Pat said she loved it and asked about shoes, jewelry, all that stuff.

My mother showed zero interest and just asked what time dinner was and if I was going to be home. I'm not blaming my mother for this, I'm blaming the awful illness of dementia. I have to admit though, it did hurt. It hurt a lot. I wanted her back. I wanted her to ask me to try it on, to tell me it looks great, to ask me all the questions that she used to ask me when I had to go to an event.

This made me think of all the little chips at our hearts we caregivers experience over the years when caring for a loved one. It made me wonder, do caregivers build up scar tissue? Do we get so used to these little losses that we just chalk it up to daily life and don't even talk about it with others?

Before writing this post, I didn't mention this sadness to anyone, but it resided within me. I guess we have to build up scar tissue to survive in this role or else we'd all be walking puddles of tears.

My conclusion -- for caregivers, it's not the big catastrophes like loved ones going to ERs or into nursing homes that define us, although that's usually the times when others pay most attention.  It's the little, day-to-day chips and losses that we all experience but rarely talk about that make us who we are.

When I meet or hear from a caregiver, it's usually when they need help the most. But, now, I vow to also ask and listen to all the chips to their hearts that they don't often talk about and won't discuss unless they are asked. They are painful to hear, yet, so important to give voice to.

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Lynette Whiteman

Thanks for your feedback and honesty. It sounds like such a difficult situation you are living through and I can't imagine how frustrating it is. Changing roles with your parent is tough, but the loss of the relationship with your partner and spouse has to be brutal. People don't understand that just because you are living with someone, doesn't mean you aren't incredibly lonely when you lose your partner and someone to equally care about you. I love your last sentence about it being easier to take if you thought he was just being a jerk, instead of it being very sad. That's true for me too, when my mother is so incredibly self-centered, I have to remember that it's her illness, not her. Not always easy to remember in the moment though. I hope you have a good support system that you can \"vent\" to without judgement and who understand what you're going through. Lynette

Lark

I read this post with great interest and related to everything you wrote. Caregiving someone with dementia has the lonely, lonely inevitably of us becoming invisible to our caree and they becoming someone we do not know. I found your comments_mysql on developing scar tissue to cope with the sorrowing to be interesting. \r\nI realized that I was building scar tissue to toughen myself against all the moments that hurt me, all the angst when I realize the events I am missing in my grandchildren's lives and the many family events I have not and cannot attend, my own health suffering...long list, isn't it?\r\nOne day I knew that building up that scar tissue came with a price. It did protect me but it also hardened me to all the other things in life that I wanted to feel, that I needed to feel. I realized, intuitively, that the protection I was building was blocking me from experiencing my life with my husband and with this dementia. I was becoming resentful, stressed, uneasy. Building scars blocked stuff in as well as out and I had to work harder and harder to keep those scars in place. \r\nBecause of my relationship with Christ and my many years in AA and the amazing healing that happens as I participate on this site I was able to take a deep breath, stare at my fear, hurt and pain and begin to feel them fully. It was not so difficult. I had all of you and my many friends and loved ones to look to for comfort. I stopped working so hard not to feel and began letting each season of hurt, etc. flow through me and out of me. \r\nYes, it hurts and I cannot believe my own sense of loss at times. I am irritable at times and very, very human. Unfortunately, there is no end in sight and that reality burdens me. Yet that is the truth for all of us. It is just that this reality has a face and brings with it a loss of dreams and hopes. \r\nI built my walls and I tore them down. I forgive this disease and I forgive my husband for not being perfect and I forgive myself for wishing, at times, that both the disease and my husband would fade away and take the pain and hurt with them. \r\nThank you for your post. It really got me thinking and I appreciate it.

Lynette Whiteman

Good luck with getting a job and congrats on your PhD. That was always a goal of mine but I never got that far. I think having somewhere definite to go each day and be with people to talk politics, tv shows, movies, anything but caregiving is so helpful. Keep me updated! Lynette

Lynette Whiteman

Aw Barb - I feel your pain so acutely. My mother is exactly the same way now and it's hard for me not to get angry and resentful even though I know a lot of it is her illness. I still work, so my co-workers provide so much support for me. I just can't imagine being in the house with my mom all day, every day. I give you a lot of credit just for keeping sane, but I'm sure it's sooooo lonely. I hope there is someone in your life who you can have meaningful conversations with and who listens to you. It's just unbearable without that. Lynette