Hi everyone, Late last night I posted a new poll on the topic of the basic needs for carers. It's not just for active carers but to get opinions on how all of you feel about what the needs of a carer are. That means not only what's needed to help the one you care for, but what will help you to get by as a carer now, or potentially in the future. It's a role which most people just fall into through necessity and it's a difficult one as well as being a differing journey for everyone.
There are sure to be other needs which aren't mentioned, so please add those below and thanks for taking part! 👍😊
Thank you for posting the poll Callendersgal. I think all carers need to feel supported and less isolated. It’s good to know there is someone to turn you when needed. Xxx
Respite care to give the carer time to rest, perhaps have some sort of accommodation, even if it's a caravan, where they can get away from their caring responsibilities and recharge their batteries. Financial support, that would be another worry off of their minds.
I think the feeling of isolation; the feeling of dealing with the caring and decision making all alone gets you down more then anything. Add to that the watching of the deterioration of the one you love knowing there's not a damn thing you can do and feeling so helpless; you feel like there is just something else you should be doing and yet you just don't know what it is.Of knowing the present day is so frightening, so sad and lonely because your loved one is being replaced by someone you just don't know any longer and yet, you don't know how you're going to face the future without them.
There are days you are so damn bone tired from lack of sleep; you haven't brushed your teeth and it's night time; you need to take a shower, but there are still 50 million things you have to do; if you could just have a few days of me time to recharge but with Covid, you are afraid to put him somewhere as you might not get to see him again.
It's finally realizing it's time for Hospice and the intake nurse asks you is there anything else you need and you want to scream, yes, I want my husband back, I want the life we dreamed of after working 30 yrs in our crappy jobs; of spending time together and enjoying life. I cannot remember the last time we actually walked side by side, holding hands, instead of u step walkers and then holding him so he wouldn't fall while walking, and then transport chairs and now bedridden.
Caregivers need to know they are about to enter hell on earth and the final aftermath is even worse. PSP is horrible and they need to step up the research and find a cure; not only for the total well being of the patient, for their human life; but for the caregivers too. Everyone says this disease is so rare but it's really not. So many people diagnosed with Parkinsons have atypical parkinsonism....
DO MORE RESEARCH GOVERNMENT!!!! FIND A CURE.
So bottom line, caregivers need help.....financial, moral support, respite and in home.
What a beautiful post mjtogether. Not a beautiful topic at all but a deep lament tothe exhaustion and sorrow that goes with caring for someone you love. Would you mind if I flag it up in my next post in case it hasn’t been seen by all?
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