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An elder care roadmap & observations from the journey
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Becoming Mother

It’s been a long time since I’ve been really mothered.

If only I could go back in time to my fifteen year-old self and let her know how much I was going to miss it.  Hmm…what would I have done differently? That’s the thing about dementia and diagnoses like it, at a certain point adult children and even spouses switch hats and move from "the cared for” to "the carer”.

 I was thinking about this on Valentine’s Day of this year. My husband and I were babysitting our granddaughter and brought her in for a visit with my mom. Watching my mom and baby Grace connect through smiles and cooing and physical touch was such a beautiful thing to see. There was no need for language or short term memory – it was just a great grandmother and her great granddaughter sharing a few moments. So precious! Watching mom in this "mothering” mode, reminded me of how long it has been since I have felt like the daughter instead of the mother.

 Looking back, I remember the first moment I felt our roles begin to shift. Years ago, before my father passed away, Dad had suffered a heart attack. We all rushed to the hospital to visit. After a brief visit with Dad, we were led to a waiting area for some information from the doctor. I was feeling small and frightened. Mom was sitting on the arm of the couch. Needing to be comforted, I slid onto the sofa beside her attempting to find her arm around my shoulder, but before I knew it, Mom slid down onto the couch into my embrace. It hit me our roles were changing. I was moving from comforted to comforter – from daughter to mother.

Sometimes I would love to be the daughter again.

Even now after five years, it still crosses my mind to pick up the phone to share good news with Mom when it happens. I still pause and remember – "Oh ya, that can’t happen anymore.” When I am worried, when I need some perspective or when I am just feeling small and vulnerable, how great it would be to hear her say, "You’re doing great! It’s going to be ok. Everything will work out. I’m praying for you. I am proud of you….and ….I love you.” I miss that! I think for me that is the biggest loss I experience because of this disease.

Yet, even still, it is an honour to be a comforter. It is a role I willingly accept and would do again if needed.  Fortunately, many substitute mothers have found their way into my lives. I am blessed to have some very special women who encourage, embrace and mother me a little! I doubt they even know how much they mean to me.

At the end of our last visit, as I rose to leave mom, I leaned over and kissed her on the cheek and said, "I love you Mom!” "I know you do,” she said with a big grin. "I know you do!”

I had to smile as I walked away thinking: "I know you do too Mom!”

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From a Distance

Caring from a Distance

When I started calling myself “my mother’s caregiver” many people assumed Mom and I lived under the same roof. That is not the case. While, workload and anxiety is much higher for a live-in caregiver, there are many different types of caregivers. As the number of seniors continues to rise, more and more people (like us) will find themselves responsible- to varying degrees- for parents or relatives.

A few weeks back at a house party, I was surprised at how many people had a parent/s in long-term care or on the verge of needing some care. Of course my “radar” is set to “senior”, but still at this small house party alone there were five couples (that I know of) with family members battling dementia and most of them lived at least an hour’s drive from that person. All of them were worried.

While there are days I think a little “out of sight, out of mind” might be nice, caring for a parent who is far away is no picnic either. The guilt and the worry definitely go up a notch. It is hard to know by telephone or email conversations whether their relative’s situation is changing or not. It is easy to over-react and under-react to a parent’s changing moods and impossible to get a handle on how they are really doing. There can be past baggage/ personality issues to cloud their judgement, i.e. “Mom always did exaggerate” or “Dad is just trying to make me feel guilty again.” Also the changes they do see are often so subtle they could be related to other things. Often a parent becomes depressed after the death of their spouse or a move, making it difficult to tell the difference between stress, grief and dementia.

If you find yourself in this situation what should you do?

  1. Make contact with a trusted neighbour, pastor, professional or friend of your far-away parent. Explain that you are concerned and request they let you know if there are any consistent changes to your loved one’s behaviour, habits, memory or mood.
  2. Contact your parent/relative often and consistently, but also try to reach them at different times of the day and week as well. This will help you see if there are any concerning patterns. (How are they eating, sleeping, behaving?)
  3. Note whether they are telling you the same thing over and over again or if the story is not the same every time.
  4. If you have reason to believe your parents are not taking adequate care of themselves, attempt to connect them with community care access to create a plan that will give them some help in their home. (Many parents will resist this process. All you can do is try.)
  5. Just try your best! Just like when we were teenagers and our parents couldn’t make usdo anything we didn’t want to do – the same is true now for them. Unless our parents are completely unable to care for themselves, all we can do is suggest alternatives. They may refuse them adamantly. All we can do is our best and beating ourselves up with guilt for what we “cannot” do, isn’t helping anyone. ~S.O.
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