My Dad’s a Goldfish – seizure

There’s just no knowing what’s coming round the corner at you. The Goldfish was on great form on the morning of Friday, May 20th 2014 and in hospital by the evening. In the morning he was alert and talkative. He didn’t even have his usual post-breakfast and shower nap. I couldn’t leave him to go and work in the other room so brought paperwork and laptop into the living room. He is fascinated by the laptop and likes to ask questions about it.

DH came up in the evening bringing fish and chips, which the Goldfish tucked into with his customary relish. Afterwards, DH took the Goldfish to the station to collect our son who was coming down for the weekend and I took the chance to go for a walk. I was back, doing some weeding and wondering when I’d have the chance to do the same in my own garden when the DH phoned from the hospital.

All had gone well on the drive to the station but on the way back the Goldfish started to shake uncontrollably and lost consciousness. Son, sitting behind his grandfather held on to him. DH turned the car and headed straight to A&E knowing it would be quicker than waiting for an ambulance. He called ahead so they were expecting him.

By the time I arrived the Goldfish had regained consciousness, though was very confused, and still in A&E waiting for a bed. His speech was not good. Last year when he lost consciousness, his speech came back after about ten minutes. We don’t really know what happened then as it was before the Step-monster had moved out and Wee-sis arrived one morning to find the Goldfish out cold on the hall floor.

Doctors can’t find any signs of infection so don’t know until test results come back and further investigations are done if it was a stroke or a bleed or ‘just’ the dementia. Wee-sis arrived, having had to find someone to cover her shift.

A bed was found in the admissions ward. The nurse, who admitted him, was she told us, brought in specially to look after him. I was torn between apologising for messing up her night off and congratulating her on being able to earn some overtime. For once, I held my tongue, determined not to alienate the person who would be looking after the Goldfish.

When he was ‘settled’ (I’m learning hospital jargon) Wee-sis and I sat with him for a while. He  became increasingly agitated, wanting to get out of bed and we realised he needed to pee. They had put a sheath on, which he’d pulled off so I called the nurse to tell her the Goldfish needed to pee. She said it was okay a sheath was in place. I said it wasn’t because he’d pulled it off. She sighed and tutted and came to look, sending me and Wee-sis out of the room. She then called another nurse and told me the Goldfish “has to be catheterised because he’s unable to pass urine.” I didn’t argue and we waited outside until the job was done.

We went back in to say goodnight. Torn between wishing he could just slip peacefully away and willing him to fight. I’m sure he’ll fight. He is physically strong enough to fight back and will come home – thought will, no doubt have taken another step or two down the dementia slope. I’m not ready to lose him.

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28 thoughts on “My Dad’s a Goldfish – seizure

  1. It is difficult to push the “like” button for this. Am so sad thinking of you and what you are handling with such grace. And also, frankly, scared to read what the future may hold. I totally understand your mix of emotions, which you articulate so well…

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    • I do hate to think my writing about my family’s story is scary for others, especially those who are in the early stages of the journey. On the other hand if I’m goign to write about it I have to be honest. Everyone’s journey is different although I suspect we each of us have those very mixed emotions. Thanks for commenting, I do appreciate it.

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      • Do not hold back for fear of scaring me of others in my situation. The straightforward honesty of your writing is what we all need. And both the differences and the similarities are important to notice. Without writers like you, the situation would be much scarier. Thanks for your sharing….

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  2. These posts must be so very hard to write. Hell, they are hard to read. And as ever, I’m stunned by your matter of fact strength and ability to see the human and much beloved father behind the fortress that dementia builds between you. You and your family are heroes in this quiet personal battle.

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    • Thanks, Barb. I’ve often been asked if I find it cathartic to write about dad and his dementia and the answer is always NO. I get angry. Actually, sometimes I find I am boiling over with rage at what dad had to go through – not the dementia as such but the way the professionals seem to lose sight of the human behind what you so aptly describe as the fortress dementia builds. I so hope things might have changed by the time it’s my turn; but I fear not.

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      • As an American, there are so many things I admire about the NHS–but their end of life treatment is NOT among them. When my parents passed away, it was at their home, with their dignity ensured by round the clock support from an array of healthcare professionals who saw their role as caring for not just their patients but the whole family. Did we just get lucky with our assigned teams? Twice in a row? Maybe. But I want that “luck” to be there when it’s time to say my next goodbyes.

        I think your father was incredibly fortunate to have you and your family there. But you all paid a huge price for that good fortune. And realistically, how many people have a support system able to bear that emotional, physical, and financial cost?

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    • It was quite scary for me getting the phone call – must have been a lot more so for the DH and son in the car. The drive to the hospital must have been terrifying for them both.

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    • At least by the time I reached the hospital he was conscious again, if very confused. I think the scariest part is the lack of warning – and wondering if it’s goign to happen again.

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  3. In such situations, one really could do without the sighs and tutts, not to mention the wait for a bed, or any grievances being aired about having to come in specially. I guess many professionals have to shut off from the awfulness of what’s happening in order to be able to do the job at all, but I wish the standard could be raised so that people who COULD cope with the frustrations and so on, was the norm, rather than the exception. It really would make all the difference. Was he really unable to pass urine or was the catheter to save any more hassle? This post also reminded me of how important ‘back up’ is for carers – Wee Sis was able to appear on the scene, DH had done the station pick up job and taken Dad along for the run, and son was on hand thankfully when there was the downturn in the car. How difficult if somebody was driving and the one passenger had a ‘turn’ or if there’s nobody around to arrive with fish and chips now and again, or if someone really is all on their own doing all the caring—as so many are of course. Hard enough with a team. Bad enough now, but with all the cutbacks, what will happen in the future. Mind you, a lot could be done that would cost nothing–in fact might save money. Common decency, compassion, genuine helpfulness and a lot more common sense, would arguably increase standards all round, save money and be a heck of a lot more helpful and supportive to anybody going through this.

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    • Oh, Janette, I know how very fortunate I was (though it didn’t always feel that way) in having a great back up team. I hate to think what would have happened if we hadn’t been around whenever he was admitted to hospital. Dad could never have answered the hundred and one questions they ask – first in A&E, the same questions in the admissions unit and yet again on the ward. And each time they asked if he (we) was happy for his information to be shared. They obviously didn’t mean with each other!
      I can’t help feeling there’s a huge difference in attitudes and nursing care between when it is something acute – like appendicitis say – which requires immediate attention but then the patient recovers and is well and suitably grateful and an elderly patient with dementia who isn’t ‘curable’.

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  4. Mary, I so understand that last statement: “I’m not ready to lose him.” How many times I thought that about Bo. I didn’t want him to suffer one more minute, he wasn’t “my Bo” anymore, but still I had a part of him, and his death would remove that. I had this thought so many times throughout his struggle as he would decline and then sort of recover and decline again. Nancy

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      • I’m doing all right, Mary. I had no idea what to expect of myself, but I believe I did so much grieving along the way, that …. well, there’s not much grief left. So much relief for both of us. It’s hard to say because I think most people expect me to be broken, but I’m not. At least, not yet, after just a week and two days. Maybe one day it will all wash over me and it will be hard to get up and go out, but not now. Jon and his family left on Saturday for a 10-day vacation, so I’m alone with my dog Emma and Charlie cat. Friends are calling and inviting me to do things, and I have many things to do here at home. The Christmas decorations are still up — should I take them down today? Bo’s clothes are here — should I remove them today? and so on … I have scheduled a flight to Tucson, Arizona, to visit dear friends who always came to me. They wanted to fly in now, but I said I’d go to them, so at the end of the month, I’ll go there for a week. And so life will move forward. My university classes begin at the end of the month. I think I will continue my blog, at least for a while. …. some reminisce and some comments on life now.
        Nancy

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      • This is in reply to your second reply, Nancy. I’m glad to hear you are doing all right. I think for the first couple of weeks after a death we live in a kind of bubble, not quite in touch with our emotions or with what else is going on in our lives. I broke down totally unexpectedly a few weeks afterwards when they came to take the borrowed hospital bed away. There is no ‘should’ with regards to things like sorting out Bo’s clothes and things – do that when you feel you are ready and want to.
        I hope Jon and his family have a good vacation. And you, when you go to Arizona.
        I’m glad you are going to keep on the blog and look forward to future posts. Wishing you all the very best, Mary x

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    • Thank you. I thought they would become easier to write, especially as I am writing some posts with a fair bit of distance between actual events and now. However, I find myself just as angry now as then, especially when I know from other people’s experience that dementia care isn’t actually improving – despite a lot of talking about it.

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  5. The elegance of which you write and share this part of your life ~ the fear of what is around the corner is inspirational Mary. The emotions you share and give in your writing, makes me feel sad about the time when I must do the same (and may even be the same). Take care…

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    • Many thanks for your kind comments. I hope sharing my experiences might help others. And, although at times it was incredibly hard I got to share more time with my father than I would have if he had not had dementia and we did have some lovely times together. He kept his sense of humour and we shared many laughs.

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      • I think the attitude you have is just what is needed ~ life holds opportunities everywhere, and even in tough times we can find something meaningful. You’ve found something very special with you Dad. It is beautiful.

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  6. Alice, Thank you so much for your follow-up comment. Silly WordPress doesn’t let me reply more than once – or maybe it’s silly me who hasn’t worked out how to do it! I really appreciate you saying what you said – makes me feel this blog is worthwhile.

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