12th-21st August 2020
Wendy was having more days with of episodes of “low blood pressure” Sometimes I would test her at these times with our home blood pressure reader and would find her blood pressure to be about the same during these episodes as in just normal rest times.
I had noted down that when she went next for her B12 injection I would chat to her doctor about “vertigo” as she was complaining and verbalising as mum would when she got it before Alzheimers was on our mind.
I had googled back then to see if vertigo was a symptom linked to Alzheimer’s. As far as I could see there was no evidence that vertigo was a known precursor to Alzheimers.
However I was now into revisitng alzheimers online and this time when I Googled for research linking vertigo to Alzheimer’s I did find some articles and references that showed some research was seeing there is possibly a link between the two.
On the 12th of August I had to go to work and Wendy was coming with me. I have flexi starts to accomodate Wendy so there is no need for me to be rushing her. On this particular morning she was complaining about her head spinning and not feeling well. I carried her to the car and then parked inside the warehouse and got her into the office.
She went back to eating her brekky after greeting everyone and letting them know she really wasn’t feeling great and her head was spinning around like a helicopter and she couldn’t stop it.
A short while later she was sobbing and then was wailing. I was wondering what was going on, was she hamming things up for everyone or she really was in distress. It is very difficult to read her pain situation and I’m inclinded to think wailing as she was really couldn’t be great while suffering with vertigo.
She said she was hot so I removed her coat and got her some water. Next thing she had broken out in a full sweat. This is something a body can only do in this situation spontaneously. So I called the ambulance. I didn’t know if she was in cardiac arrest, or having a stroke. I could she she was pale, hot, and sweaty. We carried her out of the office to fresh air and then sat her in the car with windows open.
She wailed when we looked at her but then stopped when we weren’t. She was saying when I was sitting with her, “Sister, I’m not putting it on, its real” I considered cancelling the Ambulance and just going take her to the doctor as she calmed down at around the 15-20 minute mark.
The paramedics were wonderful and at the end of the chat I really didn’t think they would take her but they did, as they wanted to be sure there hadn’t been a stroke in particular. As I was able to confirm that only a couple of weeks earlier she was given a clean bill of health on her heart. So I followed them into the hospital.
Once in the hospital Wendy was given a full over haul, for this initial stage she was in for two nights – urine test, full blood tests, ECG, Brain scans. stomach scans. all came back good and healthy.
She was treated with medication for vertigo.
I had been allowed to drop off some personal items, but due to COVID I wasn’t able to visit. I could have pushed it but as I was working I just didn’t want to be the one to bring COVID into the hospital. So I was calling Wendy from down in the carpark where she could look from her bed or wheelchair to see me.
Each day I was expecting to take Wendy home. On day three I got to speak with a Neurologist and talked to her about my concerns in regards of changes in Wendys behaviour and how my reseach was leading to me to be concerned she had a form of dementia.
She said she felt what I was describing was very much like frontotemporal dementia. I was still wondering how much COVID could be having an effect on her disposition.
That day I did some research and listened to podcasts on the subject and I felt it was possible this was the type of dementia Wendy had, as down syndrome adults are more prone to exhibit changes in behaviour before showing memory loss.
Frontotemporal Dementia – and what Wendy was exhibiting
- Loss of empathy, emotional warmth and emotional responses
- Apathy or lack of motivation, abandoning hobbies or avoiding social contact. – Wendy is showing all but social contact – happy to have it but not asking for it or any more.
- Loss of normal inhibitions – swearing, inapporpriate comments – from “fat bum” to “F” bomb, rude and mainly thinks its funny. We have been saying for a while now “Wendy has lost her filter”
- Difficulty in reasoning, judgement, organisation and planning. Wendy seems ok on knowing days of the week and activities but not able to do all that needs to be done to get out the door or organized physically.
- Decline in self care and personal hygeine – this is never Wendys strong point – we have always had to clean her nose, brush her hair, get the sleep out of her eyes, put on her face and hand creams espeically if they need to be done properly like hers do for the psoriasis. Noticeable change in lack of care for incontinence and not wiping her bottom as well as she used to and no care for it if she has a mess in her pants.
- OCD – Obsessive compulsive disorder – she has had it for 3 years – it started not long before mum died.
- Anxiety and fearful. She is anxious about time, where and when things are happening, not to be left alone, worries about me dying, at times openly expresses worry about herself “my head, whats happening to me”
- Irritability, uncooperative and agressive – yes to all.
- Changes to walking – yes
- restlessness or sleep disturbances – she will complain on occassion but not yet actually checked too closely on this. We don’t hear her moving or up in the night but she could be just lying there awake.
- Increased noisiness or excitability – she sings lalala when I hold her hand to walk. makes silly noises at bed time. (could be normal downs behaviour thing)
- Asking same questions over and over – Yes
- same conversations over and over – yes in realtion to the question asking. But she does hang on to some stories and tells any new person she meets the stories and then they find out they didn’t happen last week but 5-12 years ago.
- Asking what words mean – Yes either made up or regular words she should know the meaning of.
- fixed mood and behaviours – appearing selfish and unable to adapt to new situations. New mood is grump and impatient over anything else when with us.
What Wendy isn’t exhibiting symptoms of
- Reduced interest in conversations, or expressing thoughts – she is still making conversations.
- Decline in ability to pay attention – other than 5 minute craft videos – she can still watch a full movie when with company – she demands answers about what they are doing during the movie though.
- Distractibility and impulsiveness – maybe she is and we are stopping her – she gets excited at the idea of adrenaline things “I want to do that – I will do that – can I?
- Changes in eating patterns and craving sweetfood, over eating and unusual food preferences – only new to it – last couple of weeks – craving sweet foods – marshmellow and wanting marshmellow sandwich!
I didn’t get to speak to that same Neurologist again but did get to speak with another young Neurologist and she said she didn’t think Wendy was showing any signs of FTD, but continued to tell me Wendy was now being treated for a gout flare up, possibly come about as she was moving even less than normal.
I was then expecting to take her home the following day, however I get a call from the second neurologist to tell me Wendys blood INR that should sit between 1.8 – 2.5 but as a result of the chosen gout medication had shot up to a reading of 8.2. Her blood was very thin and if she were injured it would take a long time to stop bleeding due to a low amount of clotting agent in her blood.
As per their hospital policy she then had to stay until her INR blood levels were back under four. In total Wendy was in hospital for ten days and she was very happy to see me. She missed her family very much, even though we all called and visited in the carpark, it just wasn’t the same. It was lovely to see, that she had been well looked after by the nursing staff.
It was frustrating not being able to see the doctors and discuss the tests better and what they had observed. However one comment that both the neurologists made to me was “she is difficult to diagnose” and don’t I know it. The conflicting answers, descriptions, where she points, is just all over the shop. I really do try to rely on observations over anything she says.
This hospital visit as frustrating as it was, was a gift in that she had so many tests, and scans done so when I went to the next level through her GP for looking into getting an assessment through a memory clinic we were half way there with all the tests that had been done and were clear and clean showing no other sinister, or treatable ailments.
26th August 2020
I’ve watched lots of your tube videos on Alzheimers and fronto temporal dementia and also joined a facebook group for Down Syndrome and Alzheimers /Down Syndrome Regression Support – Very valuable group – you do need to answer a few questions to be able to join. I’m feeling a very strong need to talk to others living with all the questions I have to better understand what is going on in families living with an aging Downs.
If what we are seeing is more than behavioural I want to manage it the right way for Wendy to minimise her fears and anxieties. To make her feel heard, understood, safe, protected and most of all loved.
My gut is saying Dementia and I don’t like it – I’m wishing and hoping for behavioural as then we have some control. Dementia is a bully and bulldozer, slowly ripping and destroying every day.
I'm lucky aren't I... 