Another development and not one I could have anticipated. On Monday, Leaf had an epileptic fit. It exhausted him, as they naturally do but he was apparently unaware and has since been fine.
Nine weeks ago (yes, he’s been in the hospital that long), when I came to visit, two days after his arrival, he was nowhere to be seen. Finally the nurses and I found him on the floor on the far side the bed. They shooed me out whilst they put him back to bed with the sides up. When I went in to say ‘Goodbye’, he was virtually unconscious, his eyes were like unseeing slits and his mouth was partially open. He hardly responded when I talked to him, so I left. At the time, I thought he might have had a mini-stroke or fallen off the bed and hit his head. Now I wonder if that incident might have been a fit.
When I called to speak to him on Monday, I was told he was in bed asleep. I spoke to a young doctor who we’d met before. His English is very good, so that helped with the medical stuff. I asked if Leaf would be given a scan and was told ‘yes’ but he won’t be put on medication unless he continues to have fits. That was a relief. I also asked two direct questions:
‘Does he have COVID?’
Response: ‘He has no symptoms.’
‘Did he test positive?’
Response: ‘Yes.’
‘Does that mean he has COVID?’
Response: ‘He has no symptoms.’ Then he changed the subject!
I thought it was a simple question but apparently not. Anyway …
THAT IS THE QUESTION
Of course I checked out epilepsy related to dementia. Here is some info from a study carried out at Exeter University:
• about 1% of the population will have epilepsy
• the risk is about ten times higher in people with dementia
• a fit may be an isolated occurrence
• the neural hyper-excitability of a fit can compound cognitive deficits in those with AD
• fits can occur in the night and therefore may well not be observed by carers
• anti-epileptic drugs can have a negative effect on cognitive function
• in rare cases, it’s thought that epileptic fits could be caused by increased levels of electro-magnetic radiation (there are pylons in the hospital grounds but I wouldn’t want to suggest that they are the cause, just that they might be a factor)
Basically, as fits can occur unexpectedly in anybody, only time will indicate how serious the problem may be. More info can be obtained from this site – one of several of course.
So how does an epileptic fit manifest itself?
- a sudden loss of responsiveness
- a rigid body with an arching back
- noisy, difficult breathing
- a grey blue tinge on the lips
- the start of jerky uncontrolled movements
- saliva at the mouth, possibly blood stained if they’ve bitten their tongue or lip
- possible loss of bladder or bowel control
And what should we do when someone has a fit?
• make sure the area around the patient is clear
• move any dangerous objects out of the way
• not move or restrain the patient
• put a pillow or cushion under their head
• not put anything in their mouth
• loosen their clothing around their neck
• once they’ve stopped fitting, turn them gently into the recovery position
• if they become unresponsive, call the emergency services
Likewise if:
- it’s the person’s first seizure
- they’re having repeated seizures
- the cause of the seizure is unknown
- the seizure continues for more than five minutes
- the casualty is unresponsive for more than 10 minutes
- they have an injury on another part of the body.
How to put a person into the recovery position:
• remove their glasses and any large objects in their pockets
• place the arm that is nearest to you at a right angle to their body, with the elbow bent and their palm facing upwards
• bring their other arm across their chest and place the back of their hand against the cheek nearest to you. Hold it there
• with your other hand, pull their far knee up so that their foot is flat on the floor
• keeping the back of the casualty’s hand pressed against their cheek, pull on the far leg to roll the casualty towards you on to their side. You can then adjust the top leg so that it’s bent at a right angle
• gently tilt the casualty’s head back and lift their chin to make sure their airway stays open. You can adjust the hand under their cheek to do this.
It’s safe to place someone in the recovery position who’s not responding to you but is breathing normally. In this position, their airway is kept open and any vomit will drain away without interfering with their breathing.
If the patient shows no signs of recovery, call the emergency services. Roll them gently over to the other side after 30 minutes. It is always a good idea to call the emergency services if in any doubt.
I would suggest that anyone caring for an elderly person, particularly one with dementia, print up these instructions and keep them to hand. It’s always better to be prepared, as we know.
Our little cat, Baby, used to have fits. They were most alarming to witness. We moved dangerous objects and observed while she went through them. Once the shaking stopped, she would usually stand up and walk away, unless the fit was a very long one, in which case she would stagger around, apparently blindly for about five minutes before recovering. Poor little darling, she disappeared in the summer and we think she may have had a fit out in the wild somewhere and not come through. We will probably never know which is always very distressing.
I am still waiting for an appointment with the urologist and will be chasing that up tomorrow. I am determined if humanly possible to get Leaf home for Christmas, not that I expect us to be whoopeeing it up but that after the holiday, or maybe after NYE, I wouldn’t be at all surprised if a backlash were to be declared followed by another lockdown. Sorry to be pessimistic but we’ve been told as much. So naturally, I want my Leaf BACK WITH ME.
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doodahtwo.home.blog 
Sorry to hear of Leafs latest prob .He’s a nice guy who doesn;’t deserve all this
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Indeed he is and indeed he doesn’t, Rich. It’s very hard.
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Good morning Sue
The world goes on. I’m mighty disheartened by these events that you chronicle with such apparent *sang-froid -* as you obviously are as well. What to make of a positive Covid test that no-one seems to think is very important? Personally, I’d be very confused. As for Leaf developing epilepsy; well, it seems that the Norns have really got it in for you two.
Over here we have just lost our demented mum – Caroline’s mother that is – at the age of 95 to pneumonia. I may have told you, if I did I don’t remember that fact of course, for such is the way of things in these ends of times – because Leaf is not alone. To return to Caroline’s mum, it was a blessing in all honesty, when Conchita died, since the last bit of her life had not been worth having. Apparently, they sometimes call pneumonia ‘the old man’s friend’ and it took Caroline’s father as well. He,too, was old and demented. I also have to monitor my own condition quite closely these days; I have now accepted that I do have a fairly unspecified neurological ailment which is deteriorating – the evidence is reasonably overwhelming – but it’s nothing I can’t deal with, or that is changing my life…so far. However, the medical establishment, or at least the truncated version of it that I need to deal with these days, in the form of The Mendip Area Older Person’s Mental Health Unit, has me in its gentle grip, so it’s probably just a matter of time before things change for me, and for Caroline as well of course.
It’s still dark here, but I’m just about to walk the little dog into Bath along the canal tow-path to buy a pair of boots. It will take a few hours, and even though the weather could be better it will be quite an enjoyable no-worries sort of a way to spend a day. I’ll come back via some old repurposed railway lines and tunnels. The landscape around here is full of dead Industrial Revolution stuff, which can make for an interesting wander. I’ll see kingfishers, cormorants and maybe an otter and a carp or two, and possibly the ravens. I never feel anxious in the great outdoors.
Love to you both
John
Take care darling (sighs….) I hope to see you soon.
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Hi John, I have to keep calm and focussing on the practicals is good. However this morning, I’m feeling far from calm. I have just spent the last hour and a half going round and round in ever-decreasing online circles trying to rearrange an appt. with an engineer who was supposed to come friday to fix our landline.
It’s cold, wet and windy and I seem to spend my time waiting as far as progress towards getting Leaf back here is concerned. I need him near me under one roof while the agents of hell battle it out with the good guy/s. I have been following it all and it’s a real roller-coaster. One day, good news, the next bad.
You did tell me about Caroline’s mum and yes, it must have been a relief. As someone who has no fear of what comes next, I am sure that many people, albeit apparently not conscious, are rightly relieved themselves. I well remember hearing a cardiac doc saying that over the course of one day, he lost three patients. They died, he simply couldn’t revive them. That was that, only it wasn’t. To his astonishment, each one came back many minutes after the usual confirmation time of death. Although three very different individuals, who died at different times, they all said crossly, ‘Why did you bring me back?’
Now, the way the world wags at the moment, I can see their point!
I’m sorry you’re having brain troubles, I hope you’re still working on consciousness which is, after all, a separate issue. Here’s a lovely video:
that I suggest to take the time to look at – it’s most uplifting but be sure to keep an open mind (a closed mind cannot evolve).
Your walk sounds wonderful. In nature is where we belong.
Hope you found some nice boots and it would be good to think we might meet again soon but I shan’t be coming to UK and I doubt you have plans to come to France. You’re always welcome of course.
Take care and lots of love to you and Caroline. xxxx
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Hello Sue
I did reply to your blog, but just as I finished it it disappeared.
Did you receive it?
Adrienne xx
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Hi Adrienne, No I haven’t received it. So frustrating when this sort of thing happens. I look forward to hearing what you had to say. xxx
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I really hope you can get Leaf home for Christmas too Sue. Sad to read about further developments but thanks for tips on what to do.
Lots of love
Trisha 💕 xx
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Thanks Trisha, I go back into ‘battle’ today to try and speed things up. I hope people will take a note of the tips because we never know. Being informed of emergency procedures is very important. I am praying that the fit, or maybe two fits, will be all. Thanks for your love – sending it back. xx
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Hello Sue,
You do not know me, but my mum Bernadette shared the link with me.
As you may know Howard my wonderful step dad (husband of Bernadette) is in the advanced stages of this condition.
I am an Occupational Therapist and work with people in South Australia who are living with dementia. It is sad to read, how they are managing your husbands care. I have shared advice and experience with my mum over the years & she has done an amazing job of caring for Howard at home, even in the latter stages of this cruel condition. This is possible Sue no one knows your husband like you. As for epilesy, seizures are a common symptom, but they are rarely this.
Mum & I would are open to share with you are learning from helping Howard (Pops as I call him) to still have quality and love in his life, even after 12 years post diagnosis. Warm regards Teresa
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Hello Teresa, Thanks so much for getting in touch.
I remember well on the few occasions we met, how lovingly your mum looks after Howard. How calm he was. This was a while ago, probably at least 18 months, so things may have changed.
Of course, you will be very well aware that each case is different and so is each carer. Leaf was/is a very laid-back and loving man but as the disease progressed, an agressive, stubborn character began to emerge. Now I realise that I might well have been a good part of the cause. Not that I wasn’t being patient most of the time, not that I wasn’t doing everything I could to try and keep him occupied and interested in what he was doing but mainly that I didn’t realise how confusing our home and lifestyle were to him. How my personality wasn’t helping. I have been called a mover and a shaker, I do stuff, lots of stuff. If something needs sorting, I sort it. I hadn’t realised how important it is to be less energetic, to go slower, give more attention, not ask too much and so on.
Now I have understood and learned and hopefully will be far better equipped to look him after at home. I know I have to put my life on hold and to devote most of my time to him.
I have created a room for him, all plain colours but well-defined edges, soft floor, warm and spartan. As is his room at the hospital. Of course, his family photos will be on display and there will be a few things to occupy him. Music will be a vital element and he will be able to watch DVDs if he wishes. I have people with experience lined up to help and give me a bit of time to myself but otherwise each day will be devoted to him. I will still have lessons to learn, adjustments to make but I am willing.
This period apart has taught me how much I love him, even when he is being difficult. I only hope I can live up to my own expectations!
Your advice and ideas, along with Bernadette’s, will always be very much appreciated.
I hope life isn’t too difficult for you and all the family in this horrible crisis.
With love, Sue
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You are certainly on the right road Sue, all people with dementia have “so called behaviours” but then again don’t we all”, its just they are not normally on public display. At times the world is a very frightening place for them and thats why they respond in an extreme manner. Reduce the fear and replace with calmness and security and it will not be an issue.
How the main carer/loved one responds is key, the calmer and happier you are, will reflect upon him. One of the main factors of being successful, is taking regular respite and rest, so that you are ready to take on some of the more challenging days.
With best wishes and hope for a much brighter 2021 for both of you!
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Thanks Teresa, Yes, having had time to reflect, I’ve realised and understood a lot. I was so immersed in getting through each day, that I had no time to stop and think.
Reassurance is key as well as affection and calmness. Phew! Think I’d better stock up on KARMS!
My best wishes to you and your family too and let’s hope that the horrors of 2020 lessen. It’s important to keep our spirits up. I hope you will have a HAPPY CHRISTMAS despite … Sue xx
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Hi Sue
I totally concur with Teresa’s post; Epilepsy is the most misdiagnosed condition in dementia. You can’t say that one seizure is Epilepsy. Howard has had several and I rejected an Epilepsy diagnosis; thankfully it turns out they are Vasovagal Syncope.
Leaf will be better off living at home with you and in his own environment. He loves you dearly and it is obviously reciprocated.
Howard is doing amazingly well and despite some periodic difficulties he is still happily living at home.
As you say Carers need patience but also tenacity. Being a strong character is crucial; you know Leaf better than the authorities.
Leaf’s previous behaviour mirrored your state of mind. You were exhausted and needed some respite.
Sadly there are no training courses for our role and we « learn on the Job »If we can help please let Teresa or me know. Hugs to you both. Stay strong and be determined to get him back. Bernadette and Howard
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Hi Bernadette,
Good to hear Howard is doing well. Interesting what you say about the fits, will bear that in mind. They’re not giving him any medication and, as his official guardian, I won’t be asking for any.
I don’t quite get your comment ‘Leaf’s previous behaviour mirrored your state of mind.’ I wasn’t being agressive or stubborn, but I can’t think you meant that.
Actually, I did do a course for trainers here in Mirande, it was very interesting and I have tried to follow their recommendations where possible. They told us that agressive behaviour is quite common, even in the mildest of characters. Frustration with themselves seems to be the most likely explanation. I know Leaf was very frustrated that he couldn’t do things he did before, like write, do Sudokus, play cards, do cross words. He was a cerebral man so, like my father who lost his beautiful handwriting ability when he got Parkinson’s, he was very frustrated. He used to say angrily ‘My brain is crumbling.’
I had an opposite problem with my first husband following his car accident which left him physically and mentally handicapped – I looked after him for 14 years. Now he had been a difficult character before the accident but became a sweetie. Who knows what happens when fate messes with the brain.
I shall do my best. Love to you both.
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Hi Sue
What I meant was you were totally exhausted, not aggressive, but desperately in need of respite. Leaf would have reacted in his own way to this. Stay strong.
Bernadette
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Yes, Bernadette, I was totally exhausted and thwarted by Covid, as are so many millions across the world. My heart bleeds for them.
I will do my best to keep up my strengths and will take lots of advantage of the help available.
Thanks, Sue x
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