Remember to care for the carers.
BEMUSED and BEFUDDLED
You can expect a look of bemusement if you tell a carer that they should 'never be a slave to anybody.' (Accusing them of martyrdom has the exact same effect.)
Baffle the carer further by offering them a break, but be sure to arrive a few hours late.
Bewilder the carer beyond belief, by refusing to offer a blow-by-blow bulletin or even the slightest explanation for your delay.
Expect to be rhetorically badgered. "Slave to who?"
Bemusing behaviour becomes bothersome, when non-patients burden the carer with demands for more time or attention.
Finally wait until you notice any signs of bitterness bottling up or beginning to bubble over. Then befuddle the care-giver by berating them for being a bully and blaming them for having a benumbed heart.
Alternatively you could just try backing the carer up. Better yet, just back off.
Or...
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When you take on the role as carer for someone that is dying or needs full time care, it is easy to feel concerned about neglecting other people you love. I now recommend letting go, walking away from, or disengaging from anybody who makes you feel worse.
Don't even bother trying to make them understand, if they don't, they won't - no matter how hard you try. If you both care enough - you'll work it out eventually.
Don't even bother trying to make them understand, if they don't, they won't - no matter how hard you try. If you both care enough - you'll work it out eventually.
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Very good advice.
ReplyDeleteThanks William
DeleteExcellent advice. I would also say to the care giver, don't refuse help. You can always remember it makes the helper feel good to aid you. So long as they aren't like the people described above.
ReplyDeleteExcellent point Jo. Mum was fortunate to have some other helpers. I did find it difficult to ask for help, though I was happy to accept it. So often the help required is just company for the patient, or an extra set of eyes and ears while you set up a routine. Some people need specific tasks, and so many things change on a daily basis it can be impossible to know what help you'll need tomorrow.
DeleteSuch an important message!
ReplyDeleteHopefully easy to understand too.
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ReplyDeleteI hope you comment again Captain without the typo this time :)
DeleteOh the things that people do! My husband (before he was my husband) used to be the sole caregiver for his Mom. He shared how important it was for a caregiver to have some time for themselves. He was fortunate to have extended family that allowed him this from time to time.
ReplyDeleteEven if you are in the same space as the patient, a nap or time to do a bit of research on how best to manage a problem is valuable time alone. Time to yourself is necessary, though I doubt many carers ever fully switch off.
DeleteHi Ida - I certainly had that .. you're being a martyr ... yet all I was doing was making my mother's life much happier, easier and better for her - thankfully she was aware and knew what was going on. One person helped enormously .. someone who did care and became like a 2nd daughter for my mother .. and visited so I could have time off ... and I wasn't with my mother all the time - as she was in a Nursing Centre.
ReplyDeleteYour post is so right on ... it's great you're writing these - for you and for us .. cheers Hilary
I knew I was burning the candle at both ends some days, I also knew it would only be for a short time. My heart went out to people who have a lifetime of caring for say, disabled people or invalids, ahead of them. Whose biggest concern may be that the person they are caring for outlives them. I also came to wonder if being a martyr was really such a bad thing - given the right cause it could in fact be a noble thing.
DeleteI have never had to deal with this, but you are right. Letting go of people who don't help and only hurt in life is the way to go. My boss' mom just died of Alzheimer's. Such a sad disease.
ReplyDeleteThankfully there is a lot of information available now that helps to understand what is happening with Alzheimers, and with the #ALS Ice bucket challenge last year - motor neurone disease received a boost too. It all makes providing assistance a bit easer, but yes it's very sad for everyone involved.
DeleteGreat advice and I do agree to your thoughts!
ReplyDeleteThanks
DeleteExcellent post Ida thank you. I agree with Jo, that others do want to help because they care (and sometimes it's hard to receive). But others really really do ... but beastly people who are thoughtless take the cake.
ReplyDeleteSpot on Susan, and great B word. Some beastly people really want to help too. They just make have special knack for making it difficult to ask for help. Requests are seen orders. They seem very agreeable at times but don't do what you ask ....and so on and so forth :)
DeleteThis is such a powerful post. People can be so incredibly thoughtless at times. I have not cared for anyone with Alzheimer's, but I did take care of my late father-in-law in the last year and a half or so of his life. He needed more and more help, and it seemed as though my husband and I were the only ones who could be bothered to pitch in.
ReplyDeleteThanks Nadine. I understand the frustration, but would do it all again for the rewards it brings. I think a lot of people not being bothered (or beastly) stems from people feeling inadequate. A lot of nursing training in palliative care seems like common sense, but some people really can't bring themselves to do things like brush another persons teeth, or understand that a warm face washer can be the highlight of someones day.
Delete