or I should say, the lack thereof.
The one year I REALLY wanted to make it to DC for the Alzheimer's Association Public Policy Forum may not happen after all. Since last Thursday I have been trying to arrange respite for Mike. While he is entitled to respite care under hospice, I cannot "pre-plan" his stay. I would only be able to place him if the day that we were leaving, there was a room available. This is so UNBELIEVABLE to me. This is the VERY REASON why we want to desperately to go to Washington. This is the craziness we want change!!! All I hear is how the kids and I need time "away" and the one time we want to utilize this service, I am being told, "you have to take your chances that a room will be available". How can I book the hotel and train, if at the very last minute (the day before) I find out that there is no where for Mike to go????? Am I the only one that thinks this is absolutely ridiculous????
I am working with the local Chapter of the Alzheimer's Association to see what can be done, but I am honestly concerned now. Are all these obstacles happening because we are not meant to go? Will something happen while we are away?
I am also concerned now about attending my nephew's college graduation in May. We were going to utilize respite then also. If there's no respite facility, then we can't go to that either. So much for me and the kids taking a break...................................
Seriously, I feel like throwing in the towel.
Follow You, Follow Me: A Young Family's Journey With Young-Onset Alzheimer's Disease
3 comments:
YOur right it sucks. I wanted to go Washington too. But cost to much. I hope you get to go. Good Luck.
im following you.. follow me back!
Karen:
I know I am in the same boat. We are planning a family trip out of the country in April and I thought I would try respite for my mother having no idea that a bed cannot be reserved. What good is that as I cannot wait to the last minute and hope one comes available. The only option I see is to call about 30 days before several facilities and HOPE one is open at that time and also have a back up plan which would be various friends and family to help out which makes me uneasy and might I add not actually be realistic. I have not yet started to try to line that up. Like you what good is respite if it is only available at the last minute. Best wishes and I hope it all falls in place for you.
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