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Support for caregivers – my new mission as a blogger

AlisonSpenserThis morning I woke up with the certain knowledge that I will be a caregiver for the rest of my life for my husband and son.

It’s not like I didn’t see this coming. My husband has Primary Progressive MS – a diagnosis he received 4 weeks after we were married two years ago. But it was yesterday afternoon that we sat with the psychiatrist who did exhaustive testing on my son to finally confirm what everyone had been dancing around for years – my son is severely intellectually disabled. This is the new politically correct term for mentally retarded – the phrase that was peppered throughout the doctor’s report. Before anyone gets insulted, upset or shocked I’m told that this is truly the diagnostic term. Yes, it’s hard to hear and tears at my heart, but it is what it is.

I’ve used the term “intellectually disabled” when describing Spencer for quite some time but the full impact of that diagnosis didn’t hit me like a bucket of cold water until yesterday. When I asked the doctor what I should expect for the future, I was told that, while he could probably be trained for a job that he will enjoy, he will be living with us, a relative or some group home for the rest of his life.

I’ve been struggling with my role as a caregiver for quite some time now. I’m watching my mom completely sacrifice her own life to take care of my dad who has Alzheimer’s, macular degeneration and recently a stroke. She’s doing this with no help. It’s not that she’s a martyr, she just feels she can do it herself. I often grieve for the close relationship we’ve lost because of this and how she sees her grandchildren less, something I know bothers her. Just yesterday I said to her I don’t know how she does this without a giant bottle of wine and anti-depressants. She just laughs it off and explains that “she just keeps going.”

I honestly don’t know if I will be able to “keep going.” I’m not as good a person as she is. I don’t want to give up my life to be a caregiver. But even as I’m writing that I feel guilty. I’m not the one with MS or intellectual disabilities after all. But isn’t this the ultimate conflict for the caregiver? How do we manage our own guilt for resenting being put in this position and the burning desire to sometimes just run away?

I constantly advise women to take care of themselves while caring for others because if they don’t, they as the caregiver will become ill. My challenge is trying to heed my own advice – how am I going to do this? Tonight I’m having a girlfriend over for drinks. My husband questioned why I would want to add something else to my plate (now I have to clean the house on top of numerous other business obligations today) and I explained this is how I need to nurture myself – I need to maintain girlfriend connections to laugh, cry and replenish.

I write about family safety and wellness and often special needs but it’s occurred to me that what I need to start writing about, sharing and asking for support in, is care giving. There are millions of people in my position. As anyone who follows my blog regularly knows, I’m an open book. I believe that the best way of coping is sharing. How have you managed being a caregiver? Please share your story and let’s all help each other.

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2 Comments

  1. Jacqueline Sembor

    Alison,
    Our short time together last week showed me how driven and outgoing you truly are. It is a gift to be able to give yourself so selflessly to those around you. All I have to say is that I am glad you are smart enough to know caregivers need to be taken care of, too!
    I am glad you made time to have a night with the girls!
    Best,
    Jacqueline

    Reply

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