Next time you think you’ve had a tough day – Spare a thought for dementia carers who spend every day of their lives coping with the challenges this devastating disease throws at them.
When I began helping families living with dementia I completely underestimated the power of respite breaks. Providing carers with a few hours to themselves just so they can enjoy some “me-time” and recharge their batteries, has proved to be a priceless gift.
The families are the “hidden victims” of dementia and we need to do more to support them. In a week where mental illness has been in the headlines, it’s the perfect opportunity to consider how we can help improve the mental wellbeing of dementia carers.
Without support, the mental and physical wellbeing of carers deteriorates rapidly as they struggle to cope.
Support can be offered in many ways – sometimes just a simple “It’s Okay” can help.
So here’s an open message to dementia carers around the world titled “Its Okay”
It’s okay to feel like you’ve had just about enough. It’s okay to scream into your pillow at 3:00am when Dad has urinated in the plant again. It’s okay to get frustrated after Mom has asked the same question 20 times in 10 minutes. It’s okay to cry when your brother is unable to associate a fork as an eating utensil.
It’s okay to feel sad when they look at you like they don’t know you. It’s okay to feel like you’re grieving before the person has passed. It’s okay to swear under your breath when they rudely demand dinner right after you just helped them to the bathroom. It’s okay to want to yell and scream your point because why can’t they just understand!
It’s okay to feel how ever you feel.
Frustrated, Sad, Lonely, Angry, Resentful. It’s okay to feel this way because you are watching someone that raised you, grew up with you, loved you, become disconnected with the memories that made your relationship. Become disconnected with the things that made them the person they are. And that hurts.
Someone with so many talents and an incredible personality has slowly become someone that doesn’t reflect who they are. Someone who may get angry, upset, resistive, hostile if you try to keep them from running out in the street. Someone who may throw things, kick and punch when you try to give them a bath. Someone who seems to get angry everytime you try to keep them safe and healthy. Someone who probably kept you safe and healthy. Someone who appears confused, anxious, agitated and lost.
It’s okay to feel lost yourself too.
You don’t know what will happen next, each day is a surprise. Is it a good day? Is it a bad day? You’re allowed to feel anxious and worried, scared and doubtful. It’s okay to feel like you want to pack up and run away, because you don’t.
You stand there strong, repeating the answer for the 100th time, letting the food and pills hit you in the face. Standing in the front door way as your hair is pulled and your sides are scratched. Ducking everytime something flys across the room. You stand strong by selflessly taking care of someone through their illness, an illness most are unaware they have. You have the hardest job there is, it takes a very strong minded, strong willed individual to care for someone with Dementia. So whatever you are feeling, please know “It’s Okay.”
A simple re-assurance like this can go a long way.
So next time you complain about your day – spare a thought for dementia carers.
It will put everything in perspective…….
What a wonderful statement, sums up the situation of carers perfectly. I had a mother with Dementia and have a son with Downs Syndrome where respite on occasions was very helpful. I have found depths of ‘patience’ that I did not know that I possessed. I am at the moment a ‘golfing buddy’ to Dementia sufferers, two of whom are good friends from years past but neither can remember me, but out on the course and in the club house lots of their humour and random memories come to the fore. It is a quick cameo of what they were and the laughter is better than our golf. They do become alive out in the open air and as part of a group taking part in something they have always enjoyed.
This is SO POWERFUL. My grandpa has dementia and it’s definitely been a rough road for every member of our family.. thank you for such a beautiful message