The battle for a diagnosis - Linda's Story
At the beginning
I wake to a familiar sound of squealing brakes and a heavy thumping sound. Spring must be here, the council are recycling the big brown bins again for the first time this year. I open the blinds and sun streams into the kitchen the grass suddenly greener and the sky for now azure blue.
Such a stark difference from the wind and rain before bed, Thursday a gloomy miserable day with more negatives than positives. The Coronavirus is getting a grip and life as we know it very likely to change. But this morning has a positive vibe, nature is trying to make everyone smile.
I think back to four years ago. Ken had had all his tests and scans and we were anxiously waiting for results. We were kept waiting. I finally phoned the Memory clinic, the secretary logged in our details and apologised that we hadn’t heard sooner. I knew then that something was wrong, we needed a Consult to see us and that they were in between appointments for this post.
Aka we’d got forgotten. Quite a surprise then we could suddenly have an appointment in two days time, the day after our Grandson’s first birthday.
We went to the Tropical Butterfly World and walked around Rounday Park the little birthday boy in a carrier on Grandpa’s back. Cold fresh and sunny much like today- the last day before we knew for certain. Four adults together and our first grandchild enjoying each other’s company no one would ever have known that we were on the brink of the dementia hashtag. I’m so glad that the dreaded appointment did come on the little boy’s day, a date that would be forever tainted.
Our memories of the Memory clinic have not been positive ones.
Right from the very start.
We were signed posted by our GP pretty much at my insistence, with strong feelings about Ken’s acalculia . A term if you haven’t heard of it before is acquired impairment resulting in loss of ability to perform simple mathematical tasks, even knowing which of two numbers is the largest. I may sound knowledgeable (thanks google) but to our doctor’s surprise I told him it is typically the consequence of disease or damage to the parietal lobe of the brain. They had to take us seriously and despite passing the GP Dementia test Ken got a referral.
As usual it was a couple of months before our initial consultation, I say consultation it was actually an appointment with a nurse at the Memory Clinic. Our letter said for ‘Older persons services’ which immediately made my hackles rise, Ken was fifty three.
They called my name, and we went into a small square room, the nurse talked to me and gradually it dawned on me they thought I was the one with a problem, I had a similar name to another person on the list that morning, it wasn’t a positive experience.
Once Ken was established as the patient the appointment did not improve. It was clear that the nurse thought we were wasting her time, Ken could speak pretty fluently then, and looked convincingly well. It wasn’t until she started the questionnaire assessment tool that the facade was torn and her attitude visibly changed.
Two question and answer tests. I knew he wasn’t performing as expected. Then the second where my presence was excluded.
A delay whist she worked out the results. Yes, Ken had done just bad enough to warrant a Consultant appointment. He’d performed exactly as I expected, his general knowledge, basic language skills were good but he hadn’t scored anything in the mathematical part of the test, making his overall score borderline, not really an accurate representation of Ken’s specific problems.
I had my ammunition ready when we saw the Consultant, already I was anticipating a battle to get a diagnosis. As I’ve said earlier a brain tumour would have been the most positive result, at least there would be pathways to follow, the other option a walk into the unknown. He sent us for a CT scan, another wait. The result inconclusive. I kept working for Ken, he just told everyone ‘he was alright’ not really want I wanted him to say, but a reaction I’m sure many pre diagnosed with dementia might adopt. Thankfully because of Ken’s odd psychometric results he was sent for PET scan at Leeds University hospital.
Again if you don’t know what this is, in layman’s terms it involves measuring the uptake of sugar in the brain and identifies brain cells that aren’t working. The brain images show which bits don’t work because they result in a hole. Ken had damage in the parietal lobe. The bit responsible for numbers, basically brain failure in this specific area. No wonder he had no comprehension of money and time.
Once again there was a delay, maybe six weeks after the scan and we didn’t have the results. No one to tell us at the Memory Clinic, shortage of staff, under resourced. All very valid excuses but harder to bear when you’re in the ‘waiting to know’ phase. At least the clinic is local to us, but it’s demographic area is very large there’s long waiting lists for services.
Another phone called, me badgering again, a cancellation we had an appointment.
You would hope that the delivery of such a huge diagnosis would be done with some sensitivity and understanding. Not the case, we had to move rooms twice as ours was double booked. Clinical, no real explanation, no real plan forward, we were simply read the radiographers report ‘shows signs of early Alzheimer’s in the right parietal lobe.’
Did we want to take medication? (of course we did!) A prescription is presented, the rather nervous doctor who was meeting us for the first time, was obviously waiting for a dramatic reaction from us. Instead we were calm, at least we hadn’t been making it up and our battle to prove this was not anxiety, depression or stress was an achievement, maybe we might be able to access the right support.
No follow up, discharged back to care of GP. We left the Memory Clinic with a large envelope of leaflets, advanced wishes and the like. I was shocked. We were on our own. We knew of no one with Young onset dementia and neither did our GP. We knew of no local services. This was going to take a lot of adjustment. Looking as handsome and ‘normal’ as ever there was little peer support for Ken. We had a big hill and learning curve ahead.
You can read Linda’s blog here.