Archive for the ‘Caregiving’ Category

How can one possibly get so tired, be tired, stay tired, and yet keep on going?  I am absolutely worn out, inside and out, mentally, physically, and emotionally.  I’m doing a job I didn’t ask for, don’t want, and in some respects am not very good at.  Nursing was never on my list of career choices; I’m a teacher and an organizer and an administrator.  So what have I ended up doing?  Organizing stuff for Mum:  her medical care, her home needs, her shopping, her appointments, our entertainment.  Constant follow ups. My to-do lists often have at least 18 items listed; usually, about 12 of them are for her.  And because people keep telling me I need to take care of myself and do things for myself, I’m trying to have my own life–not that I’ve time for painting or writing or visiting or doing nothing (golly, doing nothing would be my first choice of what to do)–and keep my own household running smoothly.  I assure you, it isn’t.  My living room is a tip.  Filing and mail are stacked up in my office yet again.  I’m ‘way behind on answering emails.  Most days my bed gets made, but dirty laundry piles up and the day’s clothing doesn’t get put away.  Clean laundry simply goes through the wear-it-and-wash-it-again cycle.  Dust is evident nearly everywhere.  But my bathroom is always clean, the litter boxes scooped, and most days I get the dishes done plus the counters cleared (mainly ‘cos I don’t do much cooking here).  And a true joy is having a freshly made bed to fall into at night, usually later than is desirable.

My ideal weekend would be tea with toast and TV or a good book in a freshly made bed to start the day.  Sunshine so that I can sit on the balcony with a cup of tea and read a super, well-written novel.  No phone calls to make, except to friends, if I want to.  Just my cats and me.  Nowhere to have to go, unless I want to.  No rushing anywhere.  Time to meditate.  A nap in the afternoon.  Long showers.  Good food, well prepared, eaten slowly and mindfully.  More reading, perhaps with some gentle music (birds singing and water soothing) in the background.  A good movie in bed.  No having to get up the next morning unless I want to. Starting the next day with tea and toast and a good book in bed … sunshine on on the balcony … more reading, more good food, more tea, more music, more meditation.  And then to do it all over again the next day, and the next.  A whole week.  Sigh.  Ain’t gonna happen.   Not for a long, long time.

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This is a timely and noteworthy article.  We need to take/make the opportunity to make end of life as comfortable as possible for everyone.  It will come to us all.

In BC, Caregiving Takes Toll on Finances, Career, Health

One million British Columbians are caring for friends or family — and paying a price because of inadequate supports.

By Linda Givetash 27 Oct 2016 | TheTyee.ca Linda Givetash is a Vancouver-based journalist reporting on health and human rights across Canada and around the globe.



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As memory fades

Today Mum forgot her address.  I’d gone downstairs to get supper ready and told her I’d noted she’d phoned me several times throughout the afternoon while I was out but had left only one message.  She was in good spirits when I arrived, seeming quite clear, but she said she’d needed my phone number so she was calling me to check it.  She couldn’t remember my address, either, she said, starting to get a tad panicky.  As I could see her confusion and wasn’t sure whether she actually meant my phone number or my address, I told her both my suite number and her suite number, with our street address.  Then she said she wouldn’t remember anyway, and started rather frantically looking for paper to write on, so I suggested we do it later ‘cos it was time for dinner.  Easily distracted, she seemed satisfied.

Going into the kitchen to check on dinner, I was truly sad.  Certainly her short term memory has been diminishing for some time—tell her something, like the day or date or when her next home helper is coming, and a while later she’ll ask again.  Or she repeats something she’s just told me.  Several times.  But it seems lately simple things are getting more difficult for her to remember, even things she’s known for a long time.  Like her address.  She’s never been particularly good with numbers; it’s a standing family joke that she can’t remember phone numbers, but my phone number at least was one she’d never had to look up.  I’ll be writing the contact info for both of us on a sheet of paper and taping it to the wall beside her bed.  That solves the immediate problem, but of course can’t make up for the fact that this is yet another example of her fading memory.

Sometimes it’s okay for me; other times, it’s most frustrating.  I don’t usually mind if she repeats herself.  I don’t usually mind if she can’t instantly recall the day or the date or the home helper.  I didn’t mind about this.  But when she asks me a question about how to do something and I find myself explaining it over and over, it becomes painful for me and often I give up in frustration.  I notice that she can manage one or two or three steps, but anything more complicated is no longer retained.  She’s started asking, “What do I do next?” when she’s getting up to come into the living room or go to the bathroom.  These are the same routines she’s been doing for months, but no longer are they simple, automatic procedures for her.  Ah, me. This is so difficult to see.

And I know there is worse to come.  Sigh.

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Please, don’t try to fix me. I am not broken. I have not asked for your solutions.

When you try to fix me, you unintentionally activate deep feelings of unworthiness, shame and failure within me. I can’t help it. I feel like I have to change to please you, transform myself just to take away your anxiety, mend myself to end your resistance to the way I am. And I know I can’t do that, not on your urgent timeline anyway. You put me in an impossible bind. I feel so powerless.

I know your intentions are loving! I know you really want to help. You want to serve. You want to take away people’s pain when you see it. You want to uplift, awaken, caretake, educate, inspire. You truly believe that you are a positive, compassionate, unselfish, nice, good, kind, pure, spiritual person.

But I want you to know, honestly, friend, I feel like a steaming pile of shit when you try to ‘love’ me in this old way. It doesn’t feel loving to me at all. Quite the opposite. It feels like you’re trying to relieve your own tension by controlling me. Under the guise of you being ‘kind’ and ‘helpful’ and ‘spiritual’, I feel suffocated, smothered, rejected, shamed, and completely unloved. I feel abandoned in your love! Do you get that? I feel like you don’t actually care about ME, even though on the surface it sure looks like you care! But deep down it feels like you are holding an image of how I should be. Your image. Not mine!

It looks like your love but it feels like your violence. Do you understand?

Yet as soon as you stop trying to ‘help’ me, you are of the greatest help to me! I stop trying to change to please you! I feel safe, respected, seen, honored for what I am. I can fall back into my own power. I can trust myself again, the way you are trusting me. I can relax deeply.

Without your pressure, your demand for me to abandon myself and be different, healed, transformed, enlightened, awakened, mended, ‘better’, I can better see myself. I can discover my own inner resources. I can touch my own powerful presence. I feel safe enough to allow and express my true feelings, thoughts, desires, hold my own perceptions. I no longer feel smothered, a victim, a little child to your expert adult. The courageous adult in me rises. I breathe more deeply. I feel my feet on the ground. Loving attention drenches my experience, even the uncomfortable parts. My senses feel less dull. Healing energies emerge from deep within. I feel light, free, liberated from your fear. I feel respected, not shamed. Seen, not compared to an image.

You help me so much when you stop trying to help me, friend! I need my own answers, my own truth, not yours. I want a friend, present and real, not an expert or a savior.

And do you see, when you are trying to save me, you are actually abandoning yourself? You are running from your own discomfort, your own unlived potential, and focussing on mine? I become your ultimate distraction. I don’t want to be that for you anymore.

Let’s break this cycle together! Let’s stop trying to fix or save each other. Let’s love each other instead. Bow to each other. Bless each other. Hold each other. As we are. As we actually, actually, actually are.

– Jeff Foster

Photo: Lisa Bonet


Embody your Wild Nature

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Another Caregivers Prayer

There are lots of these out there, and Heaven knows we need as many as we can find, every day!

This one was written by Carol J. Farran, DNSc, RN, and Eleanore Keane-Hagerty, MA, in 1989 and printed in The American Journal of Alzheimer”s Care and Related Disorders & Research.

12 Steps for Caregivers

Although I cannot control the disease process, I need to remember I can control many aspects of how it affects me and my relative. I need to:

  • Take care of myself so that I can continue doing the things that are most important.
  • Simplify my lifestyle so that my time and energy are available for things that are really important at this time.
  • Cultivate the gift of allowing others to help me, because caring for my relative is too big a job to be done by one person.
  • Take one day at a time rather than worry about what may or may not happen in the future.
  • Structure my day, because a consistent schedule makes life easier for me and my relative.
  • Have a sense of humor, because laughter helps to put things in a more positive perspective.
  • Remember that my relative is not being “difficult” on purpose, rather that his/her behavior and emotions are distorted by the illness.
  • Focus on and enjoy what my relative can still do rather than constantly lament over what is gone.
  • Increasingly depend upon other relationships for love and support.
  • Frequently remind myself that I am doing the best that I can at this very moment.
  • Draw upon the Higher Power, which I believe is available to me.
Reprinted from The American Journal of Alzheimer”s Care and Related Disorders & Research, November/December, 1989, 4(6), 38-41.


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Caregiving for a living

Caregiving for a living isn’t.  Living, I mean.  It’s tiring and draining and frustrating and horrible.  There are few satisfactions, few days when one feels as if something’s been accomplished with a feeling of happiness at the end of the day after falling into bed.  Generally, it’s falling into bed exhausted.  The unseen organizing and re-scheduling and challenges take their toll.  Every day.  Never mind the personal care and the planning and the shopping and the cooking and cleaning and dodging bullets and trying keep everyone happy.  There’s little thanks to be had in this sort of job; certainly no paycheque or benefits.  Sick days are an impossibility.  Vacations–even days off–are rare.

It’s not a job we actually apply for.  It just happens, insidiously, as one chore is added to another, piled on top of a great mountain called Need which becomes greater and greater.  And there’s no end in sight.

Caregiving is, as one friend puts it, “relentless, energy depleting, joyful, compassionate work … even more so when it’s Mums or Dads, because boundaries aren’t always respected.”  Amen to that.

Tired, tired, tired, tired.

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