My Dad’s a Goldfish – Reading and thinking

In a dementia training guide I read: “Looking after someone who has dementia can be very stressful [tell me about it!]. One of the things you may find hardest is living with your feelings about caring. It helps to know what these feelings might be. Most carers experience a variety of emotions. The most common are sadness, guilt, anger and fear. You might expect to be sad when you feel you are slowly losing someone you love. Anger can be more of a shock.

“On the other hand, caring can also be rewarding. For example, some people see it as a chance to give back to a parent the care they were given as a child. People with dementia often seem calm and happy despite the illness.”

Much of this makes sense and describes the roller coaster of emotions I feel, especially the sadness and the guilt. The anger I feel is not directed at the Goldfish and I am patient with him. It’s the step-monster who provokes my rage.

There is also anger that the Goldfish has to have this horrible illness. It seems so grossly unfair. He is such a nice man and has been all his life. He enjoyed his golf and his dominoes in the pub, was very sociable and well-liked by everyone who knows him. I find I’m switching tenses here – I suppose because although he is still with us he is probably considered an ‘absent friend’ by most people who knew/know him. Actually, he has outlived many of his contemporaries and once he might have been proud of that but, sadly, he is no longer able to take pride in his longevity.

Oh, yes, there is guilt – that I didn’t intervene sooner; that I am not his full-time carer. The step-monster is living with him day and night and the nights are not always easy. The Goldfish has clearly been getting up in the night and wandering around the house. This worries me because I know she won’t put the alarm on the doors. She will have locked up (if she remembers: she did leave the keys in the outside lock on the front door recently) and removed the key which means if there is a fire the goldfish won’t be able to get out unless she wakes up and takes charge.

“Caring can be rewarding” – well, it probably is if you are a nurse or doctor but as a daughter who loves her father and wants to spend quality time with him enjoying meaningful conversations, I disagree with this sentiment. Ensuring he has had his laxative is not rewarding, nor is trying to work out what lost word he is searching for with such frustration.

I sort of get what they are saying about wanting the opportunity to give back to a parent what we were given as children but I’m afraid the giving back to the Goldfish is not a patch on the care and love he gave me. He helped me to develop both physically and mentally. From him I learned a love of the countryside, the names of flowers – he used to help me with my school projects, gathering and pressing flowers and teaching me their names. He taught me the importance of fairness and social justice. He taught me so much – I cannot teach him anything.

I can provide meals and ensure he has a good, balanced diet and I can try to ensure he gets appropriate medical help as and when he requires it. But that is not giving back. I’d far rather he did not have dementia and we saw each other less often but when we did meet we could enjoy conversations as before, talking about books we’d read, arguing about politics, putting the world to right.

I feel very suspicious of people who find it rewarding caring for a parent with dementia. I think we can feel a level of satisfaction that we are doing it as well as we can but it certainly is not rewarding.

“Looking after yourself is not selfish – it’s sensible. You need to look after yourself, physically and emotionally, if you want to be able to go on caring.” Yes, well, quite!

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14 thoughts on “My Dad’s a Goldfish – Reading and thinking

  1. I agree, Mary, it’s not rewarding being the caregiver. Most time I spend with Mom is about groceries and mail and housekeeping and doctor’s appointments. Conversations are not real conversations. It’s her twisted recollections and me nodding my head like it makes sense. Terribly sad and frustrating. I so miss mom from five years ago.

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    • It really is such a horrible illness. I’m thankful that although huge chunks of my dad have disappeared he has retained his gentle nature and even though he doesn’t always know me he seems to quite like me.

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  2. Mary, I was lucky and neither of my parents got dementia, although their last years were tough for them physically, I’m very grateful they had their minds for those qualities you mentioned you wish you could share with your father now. Yet, my mother-in-law has dementia and in 2 months my husband and I will move into her home to be her caretakers. I’ve watched my husband struggle with loosing his mom through this disease, but something else happened as the years went on, he feels a need to be the “parent” to her now. He’s given up the idea of verbal communication and knows touch and love is what she needs most. She’s further into the disease than your dad. I love that he feels this way. He bathes and toilets her without being uncomfortable and she knows “this man” is doing it with love. I know we are entering a very tough phase soon, but somehow we know it’s the right thing to do for us. I hope to start a new blog on this new dementia journey as I wind down on My Neighbor, Miss D. I’ll be posting an update on her soon. Thank you for addressing this issue.

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    • The role reversal from son or daughter to becoming the ‘parent’ is quite difficult to come to terms with. You are so right about the need to show love and through touch seems to be important. We were never a ‘touchy-feely’ family but more and more dad seems to need to be touched, to have a hand to hold or have his hands massaged.
      Good luck with the next stage of life with your mother-in-law. I look forward to reading about it. And I look forward to a further update on Miss D – hope it is a positive one.

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      • My best years with my dad were his last five. He was so open to the love and I’ll never regret the time I took out of my life then to be with him and my mom. I didn’t have a step monster to get between that relationship and I support you pushing through this obstacle to have that relationship with your dad.

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  3. Your blogs always resonate with me. But although my mother had dementia for years, it seemed to fluctuate from extreme to moderate from day to day, with no obvious factor influencing that. For example, some days she thought I was a cousin, or her own mother, on others she knew who I was. Sometimes she just knew I was someone special to her. Obviously she had no idea of where she was, or why, or how long she had been there, but sometimes I could have a reasonably good chat about things in the distant past. I never knew whether what she said was right or not – for example, when I asked her about the golfer, Jessie Anderson (who played for Scotland), she was able to tell me about a course she’d played with her in some detail. This might have been right, or complete nonsense, though I know she was at school with her. Once, she immediately told me the name of my ayah in India (I had forgotten), and as soon as she said it, I knew she was right. Other times, she was completely wandered. Towards the end, sadly, she had almost forgotten how to eat – or rather, how to use tools. I found her lapping her cornflakes from a bowl one day. So sad. Our one consolation was we could always make her laugh by telling her she was 95. She thought that was hysterical. She had a lovely laugh – my best memory of her in latter years.

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    • Hello Jenny. There are different kinds of dementia and no two people are exactly the same although there is a general arc everyone follows. This morning dad knew who I was, whcih was lovely and I got a nice smile of recognition. Even when he doesn’t know who I am he seems to know I’m someone who cares for him. We’ve almost got beyond speech these days. He tries to talk but can’t find the words – often it is when he has just woken from a nap and I htink he has been dreaming and the dream is still real to him. This morngn when he woke from a mid-mornign snooze he was saying: “well, that’ll do fine.” I have no idea what would do fine and he couldn’t remember what he’d been saying. I’m glad you remember your mother’s laugh. I think for me it will be dad’s smile.

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  4. Rewarding…? Hmmmm…. I suppose the “reward” is not feeling the utter awfulness you’d feel if you didn’t! But on a day to day level, there are plenty of words I would use to describe caregiving, but “rewarding” is not one!

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  5. I so agree with you, Mary. So much of what you’ve said about the fine man and wonderful father your dad was resonates with me, because my dad was the same. He suffered from Parkinson’s for many years, and his last four years in a nursing home were miserable – for him, for my mom (his primary caregiver), and for the whole family. He was trapped in a completely immobile body, and finally his mind deteriorated as well. The last thing I remember him saying was when a nurse asked if he knew who I was. He struggled to gasp out, “Daughter.” When he got pneumonia, Mom couldn’t bear to let him go and went to extreme measures to keep him alive. He survived 6 more months, but that’s all it was: physical survival. He told me once, while he could still talk, that he’d seen his mama come to him the night before. Honestly, I think he left with her. He left behind an 80-pound body that was the merest husk of the dear, strong man he’d once been. I think of Dad every time I read of your father, and truly, my heart goes out to you.

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    • Thanks so much for commenting, Lorrie. I’m sory to hear about your own father’s story. You must miss him – at least the man he once was. Dad has had a series of health problems recently, including a bout of pneumonia and I do wonder what gives him the strength to keep battling on.

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  6. You are a wonderful daughter and caregiver. We kept my dad home when he was dying of cancer. My sister and mom were his nurses and I was just there to hand hold and talk. It was hard on everyone but in the end we were glad we made the choice. He died at home. That night I slept on an outdoor lounge chair in his room. He was in a coma but still making sounds. I continued to talk to him all night. In the morning, when my mom came in to sit next to him, she held his hand. As I left the room he came with me. My mom said, “Claremary, he’s gone.”

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