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Caregivers don’t quit their jobs, they are relieved of their duties. We start out as personal assistants picking up groceries and filling prescriptions. We move up to chauffeurs, event coordinators, and accountants.

We continue to get promoted, we become care partners, and then housemates. We make the leap to pharmacist and finally to nurse. We move up the ladder of responsibilities and are paid with isolation, fear, guilt, and sadness. We never know how long our job will last or when it will end.

When it does end, it’s almost as if your boss taps you on the shoulder and says you aren’t needed here anymore. You didn’t do anything wrong, there was nothing that YOU did to cause your dismissal, it just is what it is.

If you are caring for someone living with dementia, you know that no matter what you do, no matter if you are the best caregiver/pharmacist/nurse in the world, your loved one is still going to die. And yes, I am aware that everyone dies, but with dementia there is no sharing of that time. No conversing about your time together, no realizations of the love you have for each other, your memories together or the fear and sadness you are dealing with.

You are unemployed with their death. Your services are no longer needed. You are left with the question of “what do I do now?”

I don’t know what that answer is, but I have spoken to many “former” caregivers who are never the same again. They have health problems from neglecting their own health for so long, they experience PTSD and trauma issues from the many things they have witnessed and have done as caregivers.

There will never be “getting back to our old selves” again, and maybe that’s okay. Maybe we can take the lessons learned forward, into the next phase of our lives, and use them to focus on ourselves. Take the love and ingenuity we learned from our old position and put them to good use.

I don’t ever regret being my mother’s caregiver, I wouldn’t change that for anything. What I regret is not being prepared enough for it.


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