should I give up being a Chat Host?
I had a bit of a meltdown and left chat abruptly today. Those participating in the chat were as usual talking about the difficulties of caregiving. Okay I know all about that, but it is no longer today’s concern. My new concerns for Ray are different. What to do about his new conditions, whether he is on the right medications, whether the staff are giving him enough fluids, is he getting the right food, cut up the way he wants it etc.
I am having trouble reconciling being a caregiver without someone in my full-time care. Sure I am still a caregiver to Ray but it is one step removed. I stay with him when he is hospitalized; I sit by him in the nursing home for three or four hours a day. I push him out into the courtyard, read to him, show him movies or episodes of his favourite TV shows on our portable player. I go to the nurse with his complaints or with my own queries. I still Google his medications and check with the pharmacist on whether he is on the right medication for his various conditions. I even stay and talk with the doctor. But I don’t stay with him 24 hours a day as I did before.
I wish we had a new name for those who are separated by their loved one’s advancing illness, the sort of illness that has taken Ray into a nursing home because his care needs are higher than one person (me) can handle. I wish I could feel that I am still his main caregiver but somehow I don’t. The staff of the SNF now handle his day-to-day needs. I feel like an imposter, a loser, a person that can no longer cope. I know it is irrational to feel this way but it is how I feel right now.
I go to a few other sites on stroke support or dementia support and on one dementia support site there are a lot of “midows” married women who like me are separated from their husbands by the progression of the disease. Like me they visit, sometimes for years, before their spouse succumbs to one of the more common causes of death, strokes or heart attacks, pneumonia, the frailty of old age, other illnesses such as cancer, and their journey together ends. NO, no, no. I do not want Ray to die. I just want us to live the way we once did – together.
Now I need to rationalise all of this. I cannot go on doing my “wishful thinking”. It goes something like – “Ray will get better and I can bring him home”, or ” the kids will all move closer and between us we will be able to look after him” or “maybe if I used all our combined savings I could hire someone full-time for a while and then I could bring him home”. Okay you know where I am coming from so I guess you could think of some more scenarios.
We have SNFs and other care facilities because we need them. People get old and frail and need care, Ray got sicker and frail and needed care. It is logical for others to say to me “honey, you have done your best for twelve years. Now it is time to turn his care over to others." My head agrees but my heart says: “NO, no, no.”
So maybe I need to change my status back to “family” and do a “family” chat instead of a caregiver chat now. Maybe I need to sort out my feelings a bit more so I know when to post on a current caregiver’s pain and when I need to realise that I have had a lot of experience but that is changing now. I need to come to grips with the reality of my new situation.
We have two experienced caregiver chat hosts in Sally and Sarah. Sally is always on Tuesdays and Sarah and I share responsibility for Thursday nights, though we are often there together. Maybe I need to start a new chat for people who are like me, once removed from the problem of 24/7 care, still caregivers but not actually hands on now. I will have to think about it. I have loved being a chat host and making friends who seem closer some days than those I used to have in real time. But I want them to have the best advice, and I am not sure that is what I can give them right now.
My life has changed and as we all know: life changes and it doesn’t change back.
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