Respite care, Palliative care … a whole lot of caring but for who?
April 17, 2012 at 4:30 pm (Uncategorized) (dying, end of life care, hospice, how does it feel to die, implanted defibrillator, respite care)
“ Respite care is the term used to refer to the act of leaving a loved one with special needs in the temporary care of another party.” this is not what I think of when I think of respite care. when reading this definition the first thing that came to mind was, if someone isn’t already feeling guilty this would do it. words like “act of leaving” and ”special needs” are real guilt inducers. in my mind this is not what a caregiver needs to think in regard to caring for themselves. it is a bit like the old well rehearsed safety talk given by flight attendants, put your own oxygen on before worrying about your child. this goes against what most of us would think, when given a second thought it becomes more clear that we must care for ourselves first.
are we so afraid we will not be taken care of that we start as young as possible teaching selfishness is a sin? in the past years there have even been therapies to advocate being selfish. some would have us believe we have no responsibility for the words or actions that cause others to “feel” a certain way. very popular for a period of time was the, if someone gets their feelings hurt it is their choice, not your problem. that one fell flat for me, there are enough people who already think little of others feelings. if someone is “leaving” a loved one doesn’t that imply some negative agenda on the part of the person leaving? balance in all things brings real peace.
who actually gets to take advantage of respite care? not the person with the terminally ill loved one, surely not them. if they leave and their loved one died, how would that look? how would the person who decided to use respite care handle the guilt? would they feel guilty? most would I fear. how about the loved one with a long-term yet terminal illness? can the caregiver leave them? if they are at home and seem to be doing well, why not? there is always that what if game though isn’t there? in my own home this is played. it is okay to go for bridge on Thurs. for 41/2 hrs, it is okay once a month for poker another 4-5 hrs. it is not okay to go away overnight. it has been 2 yrs since the defib implant and i don’t think there has been an overnight away. in July the family from the Bahamas may come up to Charleston. if possible we will both go, if not it may be a struggle. we do not get to see them with the exception of this once a year visit. while it would bring me joy to see them it may not be the best for me. will he go? hoping that he will and wondering what bargain can be struck to make it palatable. once there, no doubt much fun will be had and he will be fine.
when in the icu i wanted to say stay home today. for today take care of yourself. fathers day came during that time. heather came up and they went to brunch, then to visit me. it was so wonderful to know that he had that time. as the person in the bed your world is just waiting, you are waiting for someone to come in to your small world of 4 walls and tell you of the outside. what did you do today? tell me of the outside world. in here there are no mirrors, no window to look out of. even when moved to a regular unit my view was of a rooftop. it is easy to become needy and dependent on that thread from the outside. it makes your time go easy, much like a prisoner i imagine. the food is certainly no better:) as the “sick” one is it okay to be selfish? hey, we are dying here! how tiresome that is.
if you have a loved one who is in the hospital, nursing home, or hospice, as a caregiver you still have needs. if your loved one could step back from this and remember a time when they were in your shoes, they would want to release you from the curse of feeling selfish. we want you to enjoy life, we want to be able to give you that. we can give so little at this point. let us give you this. take a day or two, even three or four, leave yourself in temporary care. don’t take care of anyone else for those days.
it seems like respite care is a great idea. it is an idea that needs to be embraced. we know that you love us and we may be able to do little for you now due to our circumstance. talk to us. let us know what you need. let us remember that we can be there for you still.
