There is, or used to be, a station on London…
You know that feeling, when something horrible happens to a friend, and you think “Thank goodness it wasn’t me!” – and then suddenly, it is?
That is what happened to me a few years ago, and I keep asking myself why I did not see it coming. My colleague and very dear friend started to act in a slightly, but increasingly ‘odd’ way. I pondered on it for weeks, if not months, and wondered was it any of my business. Then one day, when I knew she was driving, so not at home, I rang her land-line and spoke to her husband, not knowing what on earth I would say. It is one of the hardest things I have ever done. He heaved a sigh of relief and said ” So, it’s not just me that thinks there is something wrong….” It turned out she had dementia, and very sadly, is now deceased.
Fast forward to a big birthday on a lovely, sunny summers day, when people were inside the house and outside in the garden, having a lovely time. It was my other half’s 70th birthday, and his family and friends had travelled down from the Midlands to celebrate with my own family. Everyone enjoyed themselves and my little granddaughter was in her element passing around the sweeties, looking very, very cute.
Next day at work, I opened my emails. I was gratified to see so many from said family and friends. Then I read them. Without exception they said “Thank you for the lovely day, it was super to see you both, but what on earth is wrong with him?“
Mmmm…. His driving had not been as good, he was not as chatty, he was distant, he was doing odd things when he came in to help me at work, he forgot my birthday, but, of course it was all OK. Wasn’t it? I dithered for a few weeks, could it be the same as my friend? No, of course not. That wouldn’t happen to us.
But I started to notice more things, things that I had dismissed before. Like calling the computer technician in at work, because the printer my other half had installed on one of the computers simply would not print. That was a rather tricky moment, when it was hard not to laugh, as the technician quietly explained to me that the printer was not plugged into the USB port on the computer at all !! I had just taken it for granted that my OH knew exactly what he was doing because he had done it so many times before! Technician was very understanding, but I still had to pay the charges!
My other half had designed a data base for all my clients account details, to replace the old index card box that old-fashioned me had been using. It was a great asset, well, it was, until he managed to lock himself, and everyone else, out of it, never to reclaim it. Back to the index box went I, with loads of missing data concerning my clients, bit awkward that one, trying to explain to clients I had no idea what their instructions were, their contact details, or how much they had paid !!
I thought he was joking, when with guests in the car, he drove to the end of the road, and loudly declared “Which way now?” – but he wasn’t, he really did not know whether he was going left or right.
On one of the famous Devon diversions, round all the lanes in the car, he hit a telegraph pole and scraped his beloved car. I mentioned it the following day, and he didn’t remember it at all…. things were taking a distinct turn for the worse, I thought. But I still dithered, not knowing what to do.
Some weeks later, whilst in this country from Brazil, his brother came for Sunday lunch with his now wife. Next day at work, my phone rang, and it was the brother. ” You do realise something is terribly wrong, don’t you?” Here was someone having the same conversation with me that I had with my friends husband not that long ago. It had been as difficult for him to make the call as it had been for me – I felt for him. I was shaking as I put the phone down. What to do?
We had been together only 6 years at this point, we were not married, and we thought we were each others soul mates. I was terrified, but I would have been more terrified if I had known what was ahead. But I had to face up to what was obvious to everyone else.
I agreed a plan with his brother. I needed to get my other half to the doctors to see if we could discover what was wrong. His brother and I worked out that if I wrote to the Doctor, acknowledging the fact that I could not expect a reply because of patient confidentiality, and explained all our concerns to the Doctor, and could the Doctor ask my other half in for a routine appointment to do with his Crohn’s disease that had been diagnosed earlier in the year. We hoped the Doctor could then assess my other half’s mental state.
The Doctor is a wise man, and he suggested to my other half that he sign a letter giving the Doctor permission to speak directly with myself should he need to. What a God send that was to be.
Fast forward two or three months, to Christmas 2016, when he did not seem that well. 29th December and I walked into the sitting room and took one look at him. “You are not well!”! He said he was fine, insisted he was fine, but I phoned the surgery for an urgent appointment. When I got him there, ‘there’ fortunately, being just next door to us, the Doctor rang for an emergency ambulance and he was rushed into hospital not to return home until the following February.
This was one of many instances when he failed to recognise there was something wrong with his own health, and this time he had left it too late and there were to be life changing consequences.
Start Jan 2017
Weeks of effort by the doctors had failed to cure the problem and my other half was dying. He had lost 57 pounds in weight and was barely conscious. I’d told them that he ‘had memory problems’ and we were waiting for an appointment at the Memory Clinic at RD&E Wonford.
I visited him in hospital every day, but it was an hour each way on an irregular bus, so the time I could spend at the hospital was varied, and I often did not get to see the doctor.
I knew they had carried out numerous standard memory tests, which he had passed with flying colours because he could remember who the PM was and that Harry Barnes lived at 73, Orchard Close, Kingsbridge (just who Harry Barnes is I have failed to establish!) What I did not know was that they had also carried out a brain scan. I am not his next of kin and I was not told.
15th Jan 2017
My OH has his colon completely removed in a 6 hour operation to save his life.
Now, this is not a funny operation, I am beginning to realise. And the consequences are anything but funny – they are devastating. But that is not really to do with the dementia. Enough to say that my other half now has what is called a stoma and a bag, which is a terribly inefficient way of dealing with such things! The hospital assure me, however, that he will not be allowed to come home until he can look after himself and that he will be going into a rehabilitation unit for several weeks, if not longer. I consider that will give me time to plan for our new future together.
His children, of which there are two, have come down from the Midlands and along with myself, we set about convincing the hospital I am not his carer. It’s not that I don’t love him, but I have a career which provides my income, and more importantly, have already been a carer several times for various family members in the last 30 years. I tearfully, tell the hospital I am too old, too tired, have no longer got it in me… the words “head” and “brick wall” come to mind.
End result, briefly, is that he is discharged as there are no beds in rehab. I have to make the decision to close my shop as there are no other options. I have not slept properly for weeks, waking in the night in tears, and worried silly about his health and our situation.
A few days after he gets home, we have uncontrolled chaos all around, even down to a stand up argument between the GP, bless him, and the hospital stoma nurse, about the untenable situation my other half and I are in. His confusion is intense, and the lack of knowledge we both have as to his stoma, which can be an intensely messy and unpleasant business, makes our days long and fraught. I was not to know, and was not warned that the very long illness, anaesthetic, and operation could advance his suspected dementia rapidly.
A discharge letter arrives detailing my other half’s hospital treatment, the operation etc. Up in one corner of the page, I notice what I think they called ‘co morbidities‘ – I almost don’t bother reading it, as I knew about most of it. I then took another look and there were the words “small vessel disease”. In my currently tired and perplexed state of mind, I do not take this in. A couple of days later, I Google it. The first of many googles, and “small vessel disease” is dementia.
That is how I discover, for myself, that he has dementia – the official diagnosis comes a couple of weeks later at the Memory Clinic in Exeter. And that is where the journey really begins…