Poor Mum. She asked me to call the ambulance.
I’m guessing this is more a heart related story than a dementia one. In case you didn’t know, Mum had a pretty large heart attack on January 2017 – almost a year to the day we said goodbye to Dad. There actually is a thing called Broken Heart Syndrome. True fact. Was it that? Was it coincidental? Not sure that is a question which can actually be answered. Anyhow, as a big heart attack (an NStemi) with a troponin level of just shy of 7000 (troponin is the enzyme released to protect the heart during a heart attack) , you wouldn’t have known she was having a heart attack. Weeks following the heart attack saw mum telling tales how she wasn’t clutching her chest (she does it so dramatically – yet I’m not convinced of an oscar nomination) yet simply felt like her bra was too tight! That was information that I only managed to draw out of her after many questions fired at her. Oh how far we have come. Now I can normally nail what’s bothering her which I guess has come through getting to know her better.
Dad was a good husband. A patient one. He allowed her to be her demanding self and often he got to the stage of biting back in recent years but it had taken a long time to get there. So, it could have been a broken heart.
Mum spend 24 hours in resus before being moved to the intensive care of the cardiac world (CCU) for an entire week. Initially she was in total heart block and wasn’t stable enough to be moved to a ward. You’d have never believed it as she laughed her way through the resus experience. CCU was a marvellous experience for her first time in hospital – quiet and calm. By the time she was taken there, the heart block was downgraded to a Mobitz 2 heart block which is kind of second degree but still to this day she is at high risk of going into full cardiac arrest and after much speaking to the consultants, mum has got a DNAR in place. This means do not attempt resuscitation. The chances they couldn’t bring her round from a cardiac arrest anyhow and we have had some frank and quite graphic conversations as to what is involved and the risks.
Mum says “Well if you get to that stage you’re pretty much a gonner.” As if it’s a throw away statement.
After the echocardiogram showed much damage to the bottom part of the heart muscle (and the body has it’s own natural pacemaker which is also damaged called the SA node) so I think she has done well to keep it beating all this time. Periodically she gets beats which miss. She never feels these things but I see them when I take her obs. The machine tells me with a little icon that her beats are irregular. So, last summer we made the most of it. Here there and everywhere. Now, we have nothing booked. Do we? Or is that tempting fate? Watch this space.
Tuesday night we needed to call 999. Mum felt unwell. She was visibly shaking, her arm was aching and she was unable to move it as usual. Her vision was blurred and ‘wiggly worms’ (as she calls them) were present. Her blood pressure was very high! About 190/110 when the paramedics took it. Admittedly mum does get a little of the ‘white coat’ syndrome where the sight or thought of such things sees it spike a bit more. I was thinking TIA. A mini stroke which I think is usual when you have vascular dementia. Don’t quote me on that. I felt her left eye looked like it had drooped but said nothing. My son mentioned it the following day so I knew I hadn’t imagined it.
The paramedics were awesome as they always are. With Shared Decision making, We kept her comforted and at home. The following morning she needed to see the Dr urgently apparently. The paramedics had suggested this very strongly to which i had to roll my eyes across the room to my daughter as I would have been in one of my final university exams. How would I manage that?, I wondered. Thankfully, I managed to get to the Dr’s at 7.15am and book an appointment later that day, taking the paperwork from the ambulance visit. My lovely daughter took mum to the Dr’s with a long list of texts I had sent her to read out and mum was medicated again to help bring her blood pressure down. Today she’s floating around 150/90 so much better but still not good and she is very tired. We have all noticed she’s a little more vacant the past few days.
Right now my biggest concern is that people don’t seem to understand. Mum says, “People just don’t get it.”
I guess we are all living on borrowed time really. All heading towards the same place. Mum could be here one minute and gone the next, same as all of us. As she sits across the room from me now, yawning and yawning some more, I can’t help but wonder if this past year saw enough effort from me to know that when that time comes, did we do enough with this warning hanging over us? Dad never had such luxuries which was definitely his wish and the way he passed was perfect for him. Very sudden indeed. Gardening one day, gone within 4 days of a coma. Mum loves as much attention as she can possibly get and I’m hoping she will feel we have made a fuss of her on the good days as well as the bad days.
Of course we will never replace him but we can try our best. I sense she is actually silently struggling inside. The laughter which happens more and more and more possibly could be her covering things up. Her language has grown more positive. Even a little, “Alright mum?” Is answered with, “Yeah, lovely.”
Update to today: Last night mum felt fine as she usually does. Her arm still was hurting, her pulse was floating around 53 which is slow even for mum. Blood pressure still worries me, it was 160/101 and her oxygen levels were 88/89. None of these are fantastic. Yet she was tired at the time. We had been out and about doing a little walking. Without these things is it actually going to be considered living? Don’t get me wrong, she’s happy in front of the TV and sometimes those numbers are better on those days/sometimes not.
Making the most of everyday…