Sweat and Small Stuff

Caregivers are the experts at not sweating the small stuff.  We have no choice.  Start sweating and you would morph into a walking swimming pool.  As we continue the journey I am often surprised at what gets thrown into the small stuff bin.  Most people would be sweating buckets at what we cavalierly designate as small stuff.

A diagnosis of dementia brings instant despair.   Thoughts are of death and the horrors of caring for a loved one you can only envision in the final throes of the terrible disease.    Contemplate possibly living for eight to twenty plus years with the spectre of death hanging over you and nothing, absolutely nothing is small stuff.

Having been handed life sentences for two, we gird our loins to tackle the issues as they come.

Among the first was the constant repetition of questions that drove me nuts.   Same question, over and over.   I would vary the answer just to keep my sanity.  Now: “What time is it?”  “It’s eight o’clock.”  One, two: “What time is it?” “It’s eight o’clock.”  If it continues long enough I may get to:”It’s nine o’clock.”   No problem: small stuff.

The hearing aids somehow get stored in the freezer.  Hah!  The bread knife is in the washing machine:   small stuff.  If my Bert ‘helps’ by washing the dishes and I have to go on a treasure hunt to find where he has put them away?  So what?   I give him a big smile and loud thank you.  He is happy, while I hope I am able  to find everything before bedtime.

A ray of sunshine comes through the window and I see a film of dust on the coffee table.  I choose to see the sunshine.  I will get to the dust later.   I have to cancel my hairdresser’s appointment because my Bert’s appointment is taking longer than anticipated, no problem, I will wear a hat.   My Bert exhibits an inappropriate sense of humour or lack of rectitude in announcing loudly in church or a restaurant: “I have to go pee.”  I used to be embarrassed.  No longer: small stuff.

The little irritants that used to be stressful are just that, little.  So he puts on his t-shirt backwards, shaves off his eyebrows, wears two different coloured shoes (I did not catch it in time) to his ‘club’:  Small stuff.

In great anxiety I consult our counsellor.  I am distressed as my Bert now has Obsessive Compulsive Disorder (OCD)!  Want to be bored out of your gourd?  Watch my Bert make his breakfast open-faced Gouda cheese sandwich.   For the rest of the world, and formerly for my Bert, bread, cheese, put one on top the other and voila – open faced cheese sandwich.  Now my Bert has to cover the entire surface of the bread, just so.  I have watched as he carefully rearranges the cheese pieces until the bread is completely invisible.  The cheese must not be too uneven which will result in complete dismantling  and new reconfiguration of the same piece of bread and  cheese pieces.  I have seen him look at the composition and not being satisfied take another slice of cheese to even out the masterpiece.  The construction must then be divided into four equal parts.  The precision with which that is done is awe inspiring.  The greatest architect would be tested to get it any more precise.   The yogurt, juice, banana, tea, are another post!  I reported all this and tearfully asked:

“What can I do about this OCD?” 

“Nothing.  This may be just his way to have some control in his ever increasingly uncontrollable world”  was the answer.   So, I did nothing.  Now I will even point out a small space without cheese which my Bert will immediately fix.  Hah!  Small stuff.

I asked one of my Lifeliners what constituted small stuff to her and she answered: “Everything.”   We all laughed but related well.  We wished everything was small stuff.  Of course, it is not.  We have learnt to de-clutter our caregiver lives by paying attention only to the essentials.   I determine the very important issues by asking:  Is this a case of emergency?  If the answer is no then it is just small stuff.   It’s self care or rather, self-preservation.  

The Meander:  As the journey continues you do recognize what is important and gain confidence in identifying those issues, new behaviours and changes that need immediate attention, help and/or professional intervention.   My greatest accomplishment each day is to see my Bert happy, teasing, being himself, inadvertently cracking a joke and ‘helping’ me.  All the rest is just small stuff.

11 thoughts on “Sweat and Small Stuff”

  1. I’m glad that you’ve been able to accept in such a great way that some things matter and some things are the small stuff – it’s a good way to live whether or not you’re a caregiver but not many of us manage it!

    1. There is always a silver lining though sometimes you have to search hard for it. Alzheimer disease has taught me some important life lessons and this is one of them. I used to worry about so many things that I now see are trivial. Having to cope with this disease has cured me of that. It is not only the new perspective but, jeez, who has the time?

  2. Ah, this blog… the true you. Paula my dear, I strongly believe your ability to love, especially your love for the human race, that’s essentially the answer to you still finding joy in these not so bright days. You have often been able to give comfort and support to those hurting, even if you are hurting too. You know how to laugh, you know how to cry, and haven’t been afraid to do either. Keep doing what you are doing, and keep sharing. Love you, God bless.

    1. Thank you, Sisterfriend. Tears are our gift of release and as daughters of ‘One Love’ nation we know that ‘Love is all you need.’
      Love you too.

  3. Quite an interesting post Paula. I am most amazed at just how you are able to maintain such a sunny disposition. How your able to have that positive attitude while being a caregiver. I’m truly amazed by that. All I feel is despair, depressed and angry at what this horrible disease is doing to my mother. What it’s taking from her, from us her family.
    I truly dont know how you do it. I can only say I wish I was able to have your outlook on things, but sadly I’m just not able to. Especially when I have not one but 2 ailing parents at the same time. It’s hard to find joy or enjoy much of anything really.
    You are truly lucky that your able to. Kudos to you for having that ability, that so few caregivers have.
    Another amazing and hope filled post. Love it.

    1. Stephanie, we are all different and see things from different perspectives. Also, each journey is unique to those travelling it. You do have a very heavy burden with two in your care. However, make no mistake I do have my dark periods and dark thoughts but I have made a conscious decision that I will not dwell in the darkness for long.
      What are your coping strategies? Maybe you need to consciously create some. When I am losing patience, yes I do, listening to favourite classical music will seep into me and slowly take me out of the self and the situation. The length of time it takes to change my mood depends on how deep in the darkness I went. I read a lot and that helps if I can do that at that moment. Hard to concentrate sometimes but if it is a good book it will do the trick. The simple things are the best. If I can just leave the room and envision a favourite scene, a happy travel memory or a wonderful meal, that can work too. Don’t forget a glass of good wine!
      My counsellor has been introducing me to Mindfulness. I have not got into it as yet but it seems as if it could be useful. My problem is that there is too much rattling around in my brain even if I can find a quiet time. Yet trying is helpful. I do hope that the few minutes you take to read the blog gives you even a fleeting moment of peace.

      1. Indeed it does Paula. Reading your posts does at times give me peace and perspective too. It allows me to look at the situation in a different way too.
        My coping strategies are many. I try listening to music or watching a good movie, to get myself out of those dark places. Sometimes I just have to leave my house and go to chapters or a good restaurant and sip at some wine and try to forget, even if it’s just for an hour. These strategies don’t always help, but sometimes they do. Like you, I have counselors who are fantastic, they too help and give me some comfort & perspective. But honestly, sometimes it’s just words and sometimes even that doesn’t help shake my darkness. I am a weak women who does get pulled down into the abyss and my emotions overtake me. Cant help it sometimes. It’s really hard ya know. I just what I can to get through each day as best I can. I’m only human and I can only take so much ya know. I will say, that talking it out or journaling also helps me a great deal. So does retail therapy, which is kinda dangerous for me. lol But as caregivers, you do whatever you have to ya know.
        Anyway, I should get my but in gear and get back to my house cleaning; house don’t clean itself. Talk soon.

        1. These may be only words but Stephanie please drop the words ‘weak’ from your vocabulary. Start by telling yourself you will not talk to Paula about being ‘weak’. Stephanie, caregivers are the strongest people I know. None of us rushed to the start of the line to sign up for this job! Yet here we are doing the best we can. We all get overcome by the darkness but we do come out of it, even if it is only because we have to go cook dinner. You do have some coping strategies so use them. I can relate to retail therapy and soon I have to start gathering things for the rummage sale. Yikes!

          1. Well, I’ll try Madame Paula. lol lol
            Perhaps other caregivers are strong, I guess I just dont see myself that way.
            You certainly got that right. I certainly did not choose this job, it was forced upon me by other people. I wasnt even asked. One of the things I resent those people for doing to me, and that also makes me feel guilty. That vicious cycle of emotions. The pleasures of being a caregiver I suppose.
            Ah yes, cooking dinner. Another thing I thorough hate doing. Also likely because it was forced on me. So basically the last 5 years my independence is gone as is my life. Makes me very angry but nothing I can really do about it.
            Ah yes, retail therapy is a bit of a problem of mine. But it does make me feel better sometimes, go figure. Well, that’s enough therapy and venting for one evening. Take care my friend.

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