My Dad’s a Goldfish – Downhill slide

I had a holiday. The DH bought me a ticket to Vietnam for my 60th and off I went to stay with friends who were out there.

October 2014 028-800

One of many thousands of jaw-dropping beautiful shrines in Vietnam

I had a wonderful time although I suspected things were not going well at home when there was so little contact. In a way, I appreciated it because knowing there were problems would have made me anxious, especially as there was nothing I could have done about anything. On the other hand, we want to know, don’t we?

When I came home, the DH collected me from the station. The Goldfish was in the car. He didn’t speak to me, just stared out of the window. We arrived home and the DH said I should go in and he’d help the Goldfish out of the car. Only when we were inside did I realise what changes there had been in two weeks.

October 2014 150-400

The Goldfish after a serious downhill slide

He had been admitted to hospital with urinary tract infection. The infection had cleared up but the person who had come home was little more than a human shell. I was totally dazed for the first few days back trying to make sense of the changes.

The Goldfish was no longer able to walk. He couldn’t move from his chair. He barely spoke. He needed to be helped to eat and helped to drink. The house is full of machinery – like the hoist and stand-aid.

Of course, I blamed myself for going away but fortunately did not say so as this could only be taken as a criticism of the care – or lack of it – DH and Wee-sis had taken of the Goldfish in my absence. I knew it would have happened even if I had been here.

Oxford_Elevate_Stand_Aid

We could never have managed without this piece of equipment – but how I hated it.

I kept quiet. I learned how to use the ‘stand-aid’ to transfer the Goldfish from his chair to his wheelchair, from his wheelchair to his bed, from his bed to the shower chair… I bought dishes whose bases could be filled with hot water so the food stayed warm during the long, long time it took the Goldfish to eat his meals. He did still enjoy his food. Sometimes helping him to eat made me think of a mother bird feeding a chick – his wide open mouth waiting for the next spoonful.

I didn’t cry, not then. I suppose in the moment there was no time for such self-indulgence, too much to do – but now the tears come. And they don’t help.

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25 thoughts on “My Dad’s a Goldfish – Downhill slide

  1. Oh Mary, I can’t like this as its so sad. It’s not your fault your dad went downhill when you were away. You needed the break and it would have happened whether you were there or not.
    I know these “contraptions” are meant to help but they frighten the living day lights out of me so god knows what your dad must have felt when he saw them. It’s away to see him slumped in his chair as if he’s just given up. He was such an active man. My heart goes out to you xx

    Liked by 1 person

    • Thanks Ruth. I know it wasn’t anyone’s fault and it would have happened whether I was there or not – once someone has a permanent catheter in place the risks of getting infections increase and his immune system was shot to pieces. It’s really strange how it was only when I came to write up this post the tears came for the first time.
      Surprisingly, dad took to the contraption pretty well. We used to tell him to get hold of the handle bars as though he was about vroom off on his moter bike and he’d laugh. I never fail to be astonished at how much he managed to keep fighting whatever was thrown at him.

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  2. There is something about UTI’s with the elderly that changes their behavior/personality for a bit. We always knew when my Gram-in-law was getting a UTI by the things she would say (cuckoo things) and the way she acted. *sighs*
    And that is such a beautiful shrine.

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    • You’re totally right about how UTIs change behaviour. Before the catheter (which changed things completely) we always knew if dad had an infection – whether it was a UTI or a chest infection – by his increased confusion.
      And yes, the shrine is beautiful. I’m so glad I had the chance to visit Vietnam and would love to go back and take the DH with me to show him all I saw. It is an amazing country and really beautiful.

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  3. What a brave woman you are Mary. Firstly, for taking the holiday. Secondly, for sharing your feelings so openly. We have to accept that the care we provide cannot be replicated by others. However, we also have to look after ourselves and leave it to others to keep our loved one’s safe. You were right to go to Vietnam. I need to be as courageous as you and leave Maureen with others so that I can see my mum and my brother. I am more than a Care Partner and mustn’t forget I’m also a son and a brother amongst many other things.

    Liked by 1 person

    • I don’t think I am brave but thank you for saying so. I do think carers need to try to have some semblance of a normal life, take breaks, meet friends – but I also know how very difficult it is to leave a loved on with someone else. I hope you can find people Maureen is comfortable with so you can visit your mum and your brother – and come back to her better able to carry on after the break.

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  4. You had me in tears with this one, Mary. I remember the feeding… both when Nick was a baby and 25 years later. I remember the stand-aid too… but for me both those things were wonderful and signified unbelievable progress and hope. The weekend away at the insistence of friends after the first year of all day/every day was still hard though… relief, guilt, fear – all the usual. And of course there was a crisis while I wasn’t there – and I blamed myself too, even though it really was unavoidable. It was hard enough, not knowing back then what the outcome might be long term, but for Nick things were getting better, not worse. I can’t imagine where you found the strength, even though I know you just do. Somehow. Hugs, Mary.

    Liked by 1 person

    • This one had me in tears, too, Sue – tears never shed at the time. Exhaustion was our default mode for so long and I couldn’t imagine what it would be like to not feel tired. But there were always the little pleasures like dad’s obvious enjoyment of a plate of homemade lentil soup or a Mars Bar ice cream and his response to music he loved.
      There’s a strange symmetry in Nick’s progression and dad’s regression, isn’t there? A mirror showing positive and negative.

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      • I recognise that bone-weariness …and the small joys too, even at the worst of times. You don’t cry at the time, you are too busy getting on with what needs to be done. Nick has always said he couldn’t imagine going through this journey with a progressive illness instead of hope. I can’t imagine it either, though I nursed my late partner through cancer, when the only hope left is peace.

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    • Thanks, Lucinda. I think it was probably the worst of times. I think the more so as it was such a shock for me as he’d been doing okay when I left.
      Hope you like the Vietnam photo – you probably have hundreds!

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  5. What difficult, difficult days. We saw Dad’s UTI’s as a destructive force that took any progress a hundred steps back. I can remember standing by Dad’s hospital bed holding cartons with straws, trying to encourage him to drink, holding the carton so long that I could hardly swallow myself. No one seemed to be on the case, most nurses were either acting like cheerful children’s entertainers or detached and uninterested bystanders. Except for ‘Penny’, she made eye contact and she really did care.
    Your Dad was blessed to have two daughters like you. They say that twins can feel each others emotions from different countries – your Dad would have been seeing Vietnam with you.

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    • You are so right about UTIs being a destructive force, Julie. And it is so difficult to prevent them once a catheter is permanently in place, especially when the person doesn’t feel thirsty and sees no need for the amount of liquid we try to pour down their throats.

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  6. In my family, everyone reacted differently when my father got to that point. My brother thought that everything would be okay if we just bought that one more piece of equipment, tried one more doctor, got him on one more anti-depressant. We all tried to outguess each other and the incredibly kind and sensitive hospice staff members who called and came to the house. I went out from England, stayed as long as I could, and came home. One day my brother called and said that he had good news. My father’s heart was in great shape. No reason he shouldn’t be around for some time. I heard him in absolute disbelief. Since my mother’s death a few months earlier, my father had been systematically shutting down. He had seen his job as taking care of her, and now he was done. Done talking, done eating, done living. At least, that’s what I thought. Each of our other eight siblings had their own ideas. Our ideas were all right. All wrong. And in the end, all irrelevant. My father was back with the wife he’d loved for over sixty years. And we were left with a house full of medical equipment, most of it never used.

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    • My sister and I reacted in much the same way to dad’s decline – if either of us had different thoughts we didn’t share them. We knew there was no getting better and it was a case of keeping him as comfortable as possible – thugh he sometimes had other ideas to let us know he wasn’t quite ready to go.
      All the equipment we had was on loan. We were incredibly lucky (or just incredibly shouty) to be able to accumulate all the things we needed including a state of the art hospital bed. Of course they all had to be returned and the day they came and took the bed away was when it really hit me dad had gone. I looked at his almost empty bedroom and howled.

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  7. Oh Mary, I hope sharing your experience on this blog is as helpful to you as it is for others. I’m glad you went to Vietnam, as everyone needs some way of re-charging those batteries at such a difficult time.

    Liked by 1 person

    • Thanks, Rae. Sometimes it’s helpful, sometimes it makes me angry. If others find it helpful that’s a real bonus. I’m glad I went to Vietnam as it was a wonderful experience and I have lots of great memories of it. I just have to try to keep the two experiences – my holiday and dad’s decline – totally separate and not confuse one with the other.

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  8. I know this is spectacularly missing the point of the post, but your DH sounds abso-bloody-lutely amazing!! A trip to Vietnam, AND he stayed home to keep guard on the home front?? That’s a keeper right there….

    I LOVED Vietnam when I went (back in the day) – the food especially! I could live off pho bo forever 🙂

    Apologies for lack of presence or comments on my blog or this one lately – I’m trying to focus my spotlight away from MIL and back on to what’s going on with my life at the moment (as far as I can at least!), and with that comes a lot less focus on the poetry etc.

    Hope you are well!

    Liked by 1 person

    • Good to hear from you. Thanks for your kind comments about the DH. He’s not perfect but I’m definitely keeping him even if he drives me up the wall sometimes! Vietnam was fantastic and I’d love to go back – with the DH next time.
      I hope things are all right with you and your new job and the MIL. I do think of you and wonder how things are with you all. Take care.

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      • Job is going really, really well – touch wood! Passed my probation period the other week, and am getting 99% positive feedback from my (very nice but super intelligent) manager. Nice to have a new focus in my life other than MIL to fill up the headspace!

        My OH drives me up the wall at times too, but wouldn’t be without him… 🙂 He’s been much better on the “proactivity” front of late as well!

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    • Hello Steve. The trip to Vietnam was wonderful and I’d love to go back. It would be lovely to show my husbnad the places I got to visit. The lack of communication from home did make me a bit suspicious about what was going on, though, so I suppose I wasn’t totally relaxed. It wasn’t easy picking up my role again for various reasons including dad’s deterioration – and silly things like feeling my role had been usurped by the rest of the family!

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