I found myself in a fury the other day after reading a post about dementia terms to avoid by a well-respected blogger. How dare she tell me what I could say! I asked myself from my high horse. But then I took a breath and dismounted.
When I read about the experiences of others involved with dementia I often find myself reacting with a range of emotions I am not exactly proud to feel.
Sometimes I am jealous, reading about people who have been diagnosed with dementia yet seem able to articulate their situation in ways I cannot imagine Ralph doing.
Sometimes I am defensive, especially when I read about caregivers who seem a lot more selfless in their willingness to put dedicate themselves 24/7 to the care of their loved one.
Sometimes I am angry, when I feel harangued to behave only a certain way or use only certain terms as a caregiver. Along with that anger comes a large dose of intimidation, fear that I am not doing things the right way.
Even as I write that last paragraph, I want to backtrack, worried that I sound unsympathetic.
But the truth is that everyone’s situation is so different. Obviously being a person facing Alzheimer’s is different than facing Lewey Bodies is different than facing dementia caused by a stroke is different than…on and on
And being the person facing dementia in any form is different from being that person’s caregiver.
And caring for a parent is not the same as caring for a spouse. Caring for a husband is not the same as caring for a wife. Caring for someone in your home is not the same as caring for someone in a facility.
And even narrowing it down to wives of husbands with Early Onset Alzheimer’s, every marriage (every individual in that marriage) has a history before the onset that affects how we behave afterwards. I cannot speak for anyone else, not caregivers, whether children or spouses, and certainly not anyone on the Alzheimer’s spectrum.
This is all very obvious, but it seems important to remember every so often (for me at least).
We are all seeking a sense of commonality, the Aha! moment of recognizing our situation in the situation of others. And there is real sustenance to be gained in our connections. Yet sometimes I need to step back and acknowledge the differences as well. Doing so allows me to respect other caregivers and care receivers within the context of their specific lives but also frees me to accept my own strengths and limitations on my own terms.
Alice in Memoryland 
What a good post – you describe very accurately the range of emotions I am sure most of us experience. I know I felt everything from rage to despair, from fear to sadness – not to mention envy of those who seem to be able to do everything so much better than I can.
Sometimes I would want to talk about whatever was worrying me – just talk. The DH couldn’t just listen, though, but would offer advice, usually starting with “you should…” Maybe that’s why I blog – no one is going to tell me what I should or must do!
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Thanks. I was actually nervous about posting it, so breathed a sigh of relief when I saw you approved. Those “shoulds” are difficult because they are offered with the best intentions. And I probably offer too many “you shoulds” myself to others (as well as to myself).
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You are so right. I think there’s a big difference between caring for a spouse that you have loved unreservedly and caring for a spouse in a troubled marriage. That history surely must make a difference.
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Yes, and even two good or two bad marriages have different dynamics, i.e. who has been the decision maker, who has handled the money or the children or other responsibilities. Who has been the alpha, etc. I have been thinking of you a lot lately and hope you are doing ok.
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I definitely get this, Alice – I think it’s partly about the isolation of the caregiver, as you take on more and more tasks, find yourself having to make more and more decisions that once were your partner’s, or joint, and there really is no one else “in there” with you, to share the responsibility and sheer time-consuming load of it all with. So, how do you keep a sense of competence, and confidence, with tasks that keep changing, energy that is constantly being sapped, and with renewal harder and harder to arrange? It’s tough, and it’s not that fun.
For me, I get snappy with medical professionals – doctors who, even after being told about J’s diagnosis, speak to her as if she is deaf or retarded, for instance, and don’t understand much about memory loss – and I can be short, and need to apologize, at times. And I know that it is the accumulated stress and despair about the Alzheimers, most likely.
Thanks for writing this!
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