A heartfelt story from Gemma Bailey, director of NLP4Kids who lost her mother to early onset dementia last year.
Talking about Grandparents
In October 2021, my Mum passed away. She had a rare brain disease called Behavioural Variant Frontal Temporal Dementia, which is an early-onset dementia.
I’m normally sharing something to do with children, young people managing an adolescent mind, and everything that happens at that kind of younger end of the scale. Today, I want to make a bit more of a public service announcement and educate you around some of the signs and symptoms of dementias and brain diseases that I hope would not affect you, or anyone you know, but the reality is, it might do.
Many of you quite possibly have grandparents involved in your lives and your children’s lives. Maybe you’ve even had to start thinking about, what do we do if there are some signs of Alzheimer’s or dementia that show up for this relative later? How would I even know what I’m looking for?
I can’t share with you all the experience and knowledge that I have gleaned from going through the last seven years with my Mum. But I’m going to share some of those signs and symptoms with you today, not to cause anyone any anxiety or panic. But for you to read and store away in the back of your mind.
But if you have relatives, or maybe even colleagues, who seem to be going through a shift in their personality in their behaviour (so it’s not always about memory) then this might be information that you’ll need to draw upon again in the future.
I’m really coming at this from my own experience with my mum, which is obviously just one person but the reason why I think her case is so interesting to share with you is because it didn’t follow the route of ‘traditional’ dementia. To this day, I still have people commenting that it must have been so hard as she forgot who I was or didn’t know where she was or why she was there. Yet none of those things happened for us. There are signs and symptoms that I think we’re all probably aware of that relate to dementia such as changes in memory, or signs of cognitive impairment. All those things are, of course, important signs in helping to indicate that something might be wrong. They can also be signs that someone’s tired, maybe stressed out and overworked as well.
When my Mum was first diagnosed, I was so stressed out, I ended up going to the doctors thinking that I had something like what she did! It was all stress-induced, so let’s not discount that some of what I share with you can easily be explained in other ways.
The key thing is that there is an identifiable change and that there isn’t some other way of explaining it away. We’ve exhausted all our possible excuses.
Being the mental health professional that I am, of course, I documented almost everything that happened regarding the changes that my mum went through. I’ve got them broken down into medical, mental, physical and language, social and emotional and not all of these would be relevant when you are considering your friends or relatives.
My Mum’s dementia was also known as an early-onset dementia. We’re talking below the age of 65. I want you to have an awareness of this not just for your elderly grandparents, but actually, for your co-workers, your colleagues, and aunts and uncles because let’s face it, these different sorts of age-related brain diseases aren’t going away.
In terms of the signs and symptoms that first alerted me that something was up with my Mum , they started with the language, social and emotional side of things. The language was the one that that was initially obvious, because she was always a little bit up and down when it came to her emotions anyway. That one was more difficult to identify as a symptom, even though it was a symptom and that became clearer as time went on.
In the very beginning, she developed some strange habits around humming. This is difficult to describe because all I can say is it was a tuneless humming that drove me nuts! She knew how to sing, quite well. But she would do this hum, which was just monotone and a little bit all over the place. When you asked her why she was doing it, she wouldn’t know. The other one that she developed was kind of clicking her tongue against her teeth. And again, it just seemed to be a strange habit that developed.
She knew that she was doing it if you highlighted it to her, but she couldn’t explain why she was doing it. Some of her social skills were diminishing and at times, her responses were quite parrot-like. I remember one time we were sitting in her car, and she’d picked up a flyer that said something about always eating your five fruit and veg a day. I picked it up and said, “Oh, I think they’re saying that now you have to eat seven fruit and veg a day.” Then I put it back down again.
She responded by saying “These days, they’re saying you have to eat seven fruit and veg a day.” I said, “I literally just said that! Why are you saying it again?” She knew that she’d done it and was as confused as I was. She had some consciousness that she was beginning to behave in a different way, but she also couldn’t stop herself from doing it. She wouldn’t necessarily have that awareness of it. Unless you drew her attention to it.
I started to do was to bring her to social events that I was attending to help keep those skills up and encourage her to keep talking.
That sounds like a lovely idea. But it was quite stressful as she had lost a lot of her normal social etiquette. For example, if we went out for dinner, she might really enjoy the food and then pick the plate up and lick the plate or lick her knife. There’s going to be people that think ‘I do that!’ that doesn’t mean you’ve got a problem! The problem was that’s not how she used to be. I can’t emphasise that enough. If you know, someone who hums out of tune, and licks their plate after they’ve eaten their dinner, they are quite possibly just living their best life. But if they didn’t previously do that and you have a reaction of shock then that’s a change in their behaviour.
She began to make inappropriate comments and would struggle to empathise or to see things from other people’s perspectives, which meant that she could come across as being rude and hurtful and there was a distinct lack of concentration.
Over time that became more pronounced, and it became more problematic. She angered more quickly, and a lot more easily than she had done in the past. Again, in the past, anger had been a feature. But now it was on a whole new level. Her blame-game had really ramped up.
All these things were the things that initially prompted me to take her to the doctors to ask if they could do a dementia test, which they did. Of course, she aced it. She knew who the Prime Minister was, she knew what the day of the week it was. The things that are typically connected to dementia weren’t showing up for her. But there was something not quite right.
To cut a very long story short, she ended up having a CT scan (which was not the right kind of scan – you need an MRI) but was the best that we could do, given the circumstances.
The CT scan revealed that there were some spaces in her brain that should not be there. This was the very first thing that got us onto the right track with regards to seeing a neurologist, who was then able to direct us to the Royal Free Hospital in London.
This was maybe two years in that we got in front of the right person, so by then there were quite a few more symptoms that were showing up.
In her case the disease progressed quickly. For frontal temporal dementia, the lifespan or life expectancy after diagnosis is anywhere between 3 and 15 years. My Mum, I would say was around five to seven years because it took a couple of years for the official diagnosis to take place. There was certainly a couple of years where I knew that there was something wrong and I had a decent idea about what that thing was.
The other sorts of symptoms that showed up included
Spending significant amounts of money. Her habits around an attitude around money change significantly. She was booking holidays, buying cars, there were lots of home improvements.
This all resulted in significant levels of debt, which were messy and complicated and took up quite a lot of time
There were accusations of stealing and poisoning.
There were a few instances, not many, of her long-term memory not working as it should have done. That’s not to say that she became forgetful, but there was one incident where she didn’t recognise me.
But it seemed more like I was misplaced at that moment in time, or I was in a different context.
Her short-term memory was the one that seemed to suffer the most. If you told her something ‘Do you remember I said this to you last week?’, she would maybe struggle with that.
Decisions were illogical and irrational. She created some messy situations for me to resolve.
We had some inappropriate behaviours and repetitive behaviours. So not like OCD necessarily. For example, she bought a fidget spinner for my sister and then didn’t give it to her because the repetitive movement of the fidget spinner just completely consumed her for quite a long time.
Some hoarding behaviours kicked in, receipts, clothes. This was all part of the overspending as well, but the house became very cluttered and chaotic.
Her attitude towards personal hygiene changed as well. She was less easy to, to persuade to get back on board with those things because she became way more stubborn and much less motivated.
She was scammed a couple of times and would get up-sold to buy extra things that she didn’t need. That happened quite a lot. For someone who used to work as an administrator, her planning and organising just completely went out the window.
As time went on, I saw more instances of her rushing when she was eating or drinking and then starting to have some choking fits. She then started to develop frequent bladder infections.
I noticed too, that she seemed to have an inability to identify pain in her body in the way that she perhaps would have done before, so she might become sunburned for example and not notice that her skin was very sore and blistered.
She didn’t know when she was full up from eating and would just keep eating and eating and subsequently put on quite a lot of weight.
There was also a kind of tremor, but it was perhaps more like agitation with things like doing up zips.
She also really struggled to identify when she was tired. Sometimes she would look exhausted and start falling asleep wherever she was because she hadn’t realised how much all that bulldozing around had worn her out. She didn’t notice that she was tired.
My Mum ‘s parents are still alive and very healthy. So, you can imagine that, for them to think that their daughter had a type of dementia just did not make any sense to them whatsoever.
It meant that there were people within the family that were often looking to minimise her symptoms or to maybe brush them under the carpet a little bit. Because the reality of it was very sad and quite difficult to face up to. But there came a point where these things were undeniable. It was also dangerous to keep continuing as normal, for example, she was having more car accidents and I had to write to the DVLA and tell them to revoke her licence. This did not go down well with anybody but was also super important to do.
There was a point at which my Mum was still having my sister for overnight stays. My sister has severe epilepsy and high-level special needs. For my mum to be caring for my sister, was a bad idea. I had to report that to social services. There were lots of very unpleasant steps that had to be taken to keep everybody as safe as possible. That was difficult, because those sorts of decisions can really harm and fracture relationships in your family, or if this is related to a colleague the right approach to a situation like this is to take on a bit of an HR perspective with these things. My HR perspective on these things is, firstly, can we retrain? Can we provide support for that person to do the thing that they should be doing?
Can we reallocate this role to somebody else, and then we must think about taking that role away from them completely?
That was how I managed the situation with my Mum too.
In the beginning, I was asking myself ‘can she keep doing the things that she’s enjoyed doing, but with, some extra help, or can I train her to do these things in a simpler way?’
Then eventually, the disease progressed to a point where it became untenable for her to continue doing many of the things that she used to once enjoy. Her balance and coordination began to change drastically, and they changed significantly in a very short space of time. She began falling over more and suffering some quite severe injuries because of doing that, some of which included broken bones, bangs on the head, and overall, a loss of spatial awareness.
There were also changes at this stage with her facial expressions, they just seemed to disappear. It became very difficult to deny that something strange was happening because you don’t realise how much significance you give things like the way a person’s face is moving.
Those different expressions are communication and without them someone is just a blank canvas.
She struggled to be able to do things in the right order, and sequence and things like handwriting started to slip.
For a long time, she then was wheelchair-bound, and she became more disengaged with life. One blessing I would say, with this disease, or at least how it manifested itself in my Mum was that she wasn’t all that fussed about any of this stuff happening. There was very little distress for her. That was a big win – that she really had, complete apathy about all of this.
Something like one in 14 people aged over 65 get some form of dementia, and that’s quite a lot. We all know at least 14 people, and 65 years is not that old. There’s a lesser percentage of people who are also affected by an early onset kind of dementia, like the kind that my mum had, thank goodness.
As we age there’s a greater risk and chance of brain disease developing for that person.
If you have children and young people who are spending time, particularly with grandparents, just know the symptoms to look out for. Remember, the key thing is, have they changed? Is it different to how they were before? Some of this stuff in the beginning, looks like mental health problems. Someone could have looked at my Mum and said, maybe she’s just a bit depressed because she retired? In fact, a psychiatrist did look at my Mum and said that she was just eccentric, and it was nothing to worry about.
But if this is someone that you know well, trust me, you’re going to know when something’s a bit off. It’s important that you safeguard them, you safeguard yourself, you safeguard the children that they might be caring for, by ensuring that you know what steps to take.
So here are the steps to take:
Firstly, document everything, write down what you think you’re seeing, because later, providing a history of what changes you have identified might be important and useful. One of the things that I can come out of this whole experience and say that I’m really pleased about, is that I hounded the hell out of the various neurologists that we worked with. They were receiving three double-sided A4 pages from me saying, “here’s an update!”
In one of the letters that one neurologist sent to another neurologist, it said something about me being a ‘very accurate historian’!
Document what you think you’re seeing so that if you end up accompanying this person (or as happened initially in my case going to their GP behind their back) you can state your concerns clearly and give some accurate context around where your concerns are coming from.
Then follow those steps that I mentioned like the HR process. We don’t need to be shipping people off into a care home just because they’ve maybe locked themselves out of the house once. But what we might want to do is stick a sign up on the front door, saying ‘Have you got your keys?’
My Mum’s house ended up with laminated, bold printed sheets all over the place that we made in my office to remind her to switch off the oven, pick up her keys, lock the front door at night and switch the lights off so that she was able to continue to live independently for as long as possible.
You also must get realistic about when those sorts of low-level areas of support just aren’t working anymore. And you maybe must step it up a notch and put some other more serious safeguards in place around that person.
If their GP doesn’t seem to take things as seriously as you might like them to speak to another GP. I refused to leave the office of a psychiatrist who had told me that she was fine.
Push. You’re going to have to fight for this person because they maybe don’t have it in them, or the foresight to know that they need to fight for themselves.
In the same way that you might advocate for your children or the children that you teach, you may need to do this for your parents your aunt’s your uncle’s your colleagues who are showing some signs of brain changes.
The final thing I will say is: Have the awkward conversations. Talk about things like power of attorney, find out if they have a funeral plan or a will because I can guarantee you that future you will be glad that you took those steps with that person.
One of the most difficult things that I had to do with my Mum was talk about her advanced decisions to refuse treatment for when things got bad.
Those last couple of months were one of the most difficult experiences of my whole life. It would have been a lot more stressful if we hadn’t already put the plans in place to say what wishes she had from a medical perspective.
If somebody loses capacity later down the line, you won’t be able to go back and put those plans in place later.
Finally, thank you all so much for reading. If you are in any way affected by someone in your own life, or what I’ve shared with you today, around brain disease, and rare brain diseases, then I would like to encourage you to make a donation to the Rare Brain Support Fund, which helps to manage a couple of different charities both providing support to families and relatives who have a member of their family with a brain disease.