Sorry for the length of this: I don't even know how to express this because it feels awful. My two adult daughters and I have been standing tirelessly by my husband throughout his illness, which became severe starting early 2012 and has been a rapid, evil decline. He was separated from us for 9 months in 2013 because of injuries/recoveries from falls. We were desperate to get him home then...I gutted and remodeled our bathroom so he could come home, and we were successful with his care at home for 9 months from Sept '13 through June '14.
His care became very intense, so we moved him to SNF 6/30. We've been
visiting him regularly from July 'til now, but suddenly it seems we have
all reached a burn-out point. Our oldest daughter (due to a new
relationship) now only goes to see him once a week. I go only
every-other day at best over the past couple weeks. Our youngest, 19 and
a dedicated nursing student, only gets there every couple days, also.
We love him and miss the old him. He's well cared for in his memory care unit, but bedridden and miserable, minutes from bedsores, in and out of sleep, in and out of agitation and grouchiness, and personally, I'm almost feeling after 3 years of advocacy, there's nothing left for me to do for him. I'm broken. I don't want to be shutting down, but I feel I am. I need time to myself, I need to clean my house, I need to have a life, too! I know I can't be the only one to reach this point, can I? I feel worse, though, that I and his daughters seem to all be "moving on" nearly at the same time! I'm so sad, I just want to sleep all the time and I feel so very alone...
Among the responses I received from many supportive and empathetic LBD sufferers and caregivers was this helpful link:
We love him and miss the old him. He's well cared for in his memory care unit, but bedridden and miserable, minutes from bedsores, in and out of sleep, in and out of agitation and grouchiness, and personally, I'm almost feeling after 3 years of advocacy, there's nothing left for me to do for him. I'm broken. I don't want to be shutting down, but I feel I am. I need time to myself, I need to clean my house, I need to have a life, too! I know I can't be the only one to reach this point, can I? I feel worse, though, that I and his daughters seem to all be "moving on" nearly at the same time! I'm so sad, I just want to sleep all the time and I feel so very alone...
Among the responses I received from many supportive and empathetic LBD sufferers and caregivers was this helpful link:
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