Living with Mild Cognitive Impairment: An Interview with Dementia Mummy and her Husband

Dementia Mummy is a Dementia Campaigners and regularly writes about elder care, dementia care and MCI.  However, it is important sometimes to understand the person behind the blog.

Dementia Mummy was diagnosed Mild Cognitive Impairment a form of mild dementia seventeen years ago, in her early 20s.

Since being diagnosed Dementia Mummy has campaigned to raise awareness around MCI and Dementia and hopefully blow away some of the stigmas others have whilst hopefully inspiring those who have been similarly diagnosed.  Showing them that they can continue to live life to the full even with the condition.

Through this interview we discussed the perceptions of Mild Cognitive Impairment and dementia, the challenges faced for Dementia Mummies family and the strength that together Mummy and the Hubster have working together as a team as opposed to carer and patient.

 

How did you discover that Mummy had MCI?

Hubster: I met Mummy online (Match.com) and we’s been talking for about 3 months before we officially met.  When we’d only been on about 4 dates back in 2008 Mummy sent me an email and told me.  I was really relieved as sometimes mummy would come across as scatty and forgetful and her family would make jokes – it was like a joke I wasn’t in on, this made me feel like maybe mummy wasn’t that interested.  Once I knew what is was I jumped in the car and drove to see her, to tell her I was already falling in love with her and give her a hug.

Mummy: it was the first I love you in our relationship… My temperament would change rapidly, and I struggled to remember what had happen just a few days before.  I first started getting ill in 1998, Chronically tired, couldn’t remember simple instructions or parts of my own life.  My family would tell people I was PTI (Part-Time Intelligent).  The doctors believe the cause was a head injury trauma I suffered when I was 18 but it took a few more years for the diagnosis to be confirmed.

 

Did you consider the possibility of MCI?

Mummy: No, I’d never heard of MCI, I thought it was PMS or stress from work.  One Dr said he thought it might be Chronic Fatigue Syndrome.

 

What were your feeling and thoughts after diagnosis was confirmed?

Mummy: I actually went back to work and didn’t tell anyone for about 3 months I kept it a secret, I was so ashamed to be “old” at 21. At the same time, I felt slightly relieved that I had a reason for my behaviour.  I think like dementia people are scared of it and no one really wants to know “How you are!!!”  Back in the 1990’s the internet wasn’t as widely used as it is now so I spent a lot of time researching at the local library using real books.

I found the more I knew and understood the more I thought I wasn’t going to let this illness destroy me.  I still wanted to get married one day and settle with my own family, so I had to keep going.  Once I “accepted” my condition I was able to tell my family and close friends.  I was able to explain it to them and this reduced my own anxieties and stress.

Now with the help of my family (and the love of my children) I concentrate on what I can do, not what I can’t.

Hubster: When I found out, which was much later, I wasn’t sure how to tell my friends and family.  I asked Dementia Mummy how I should approach it, she told me to just wait till they noticed she was scatty which she hoped they wouldn’t till after we were married… it was that day that I knew I was going to marry this amazing brave woman stood in front of me with her un-brushed hair and odd shoes on.

Mummy: you proposed after that to.

Hubster: well I know how to take a hint and that was a big one [laughs]

 

What adjustments have you made to live with MCI so positively?

Mummy: I have bad days, where I really struggle to remember words to form sentences and days where just getting out of bed is a major memory fight.  I get frustrated with myself and become angry – I have to say I’m not angry at you it’s me I’m annoyed at.

Hubster: I’m always in trouble it’s just the depth that varies.

Mummy: true but on these occasions, I do tell you it’s not you.

Hubster: we try to make these instances as few and far between as possible.  I think Dementia Mummy did the right thing by gathering as much information as possible when she was diagnosed.  I’ve been luckier as I’ve had access to the internet which has connected me to more people who can share stories and understand.

Mummy: it’s learning how to live with the condition, so it doesn’t affect your life overly.  It is possible to become socially isolated through your own actions.  And it is much easier to stay in than go out and have to deal with obstacles, like not being able to see or hear properly, not being able to judge things accurately or getting lost.

Hubster: it is hard, because like in most couples one of us has to go out and work as we still have bills and a mortgage that need paying.  Dementia Mummy stays home and raises our children (Blogger Babies) and she uses her blog to campaign awareness.

Mummy: still need to make money somehow though. I feel like I’m a spare part and not contributing to the finances makes it worse.

 

How are you involved in raising awareness – why is it important?

Mummy: during my quiet years (before husband and children) I would get quite depressed, so I tried to find groups and people in the same boat just, so I could talk to someone about how I was feeling.  Back in the early 2000’s there wasn’t the wide range of dementia café’s and groups as there is now but there still isn’t the support for MCI patients.

Dementia friends information has helped, they weren’t running when I was first diagnosed but over the last few years they’ve been making waves in the dementia and Alzheimer’s world.

I started to write a blog but kept forgetting to update it, so I scrapped it in 2009.  Then in 2015 I became involved with a charity The Edith Ellen Foundation and they wanted me to manage their social media and raise awareness across the social media platforms of Instagram, Facebook, Twitter and YouTube – I then offered to restart my blog under their banner which they agreed to its called The Mummy Dementia and I’m quite proud of it.

In 2016, I became a Purple Angel - Norman McNamara from the UK was diagnosed with dementia at only 50 years of age. Whilst out shopping one day he was rudely spoken to by a shopkeeper and decided to change the way people see dementia and treat others. So, globally we raise awareness about dementia, MCI, Alzheimer’s and about being caring and compassionate.

I’ve not really had the opportunity to speak publicly but hopefully one day I’ll been seen as an influencer and be recognised as having something positive to say.

Together, Hubster and I try to get involved in as many events within the UK, to inspire others and tell them that look there is life after diagnosis.

Hubster: Dementia Mummy has a saying “To live is the rarest thing in the world, most people simply exist”, I got that, right didn’t I?

Mummy: close enough Oscar Wilde said it i just like it, it's true.  It’s just so important that you try to keep some normality about your life, you can do somethings even if it isn’t all the things you could do before – concentrate on the things you can do and don’t set yourself up to fail.

If you’re caring for someone with dementia or MCI, try not to disable them, you don’t need to do absolutely everything for them – you’ll still need to be close by to help when needed.

 

How important is it to talk about Dementia?

Mummy: It is so important to talk about dementia and MCI – so many people think that once your diagnosed you suddenly become stupid and they talk very slowly at you or around you.

I’m cognitively challenged, I can remember pretty much everything from my childhood and teenage years – I have black holes but most of it’s there.  It’s as though I can’t remember yesterday today but ask me again in a year and I’ll know what happened.

Don’t just look at a person as having dementia: they might have been a Doctor, a teacher, a researcher, writer, a driver…and those skills they’ve had throughout their life are slow to be removed.  But suddenly they’ve become an expert by experience in their own dementia, and that can add value.  We can contribute so much, instead of people doing for us they should do things with us.

It’s so important to talk about it because other people are so afraid to ask and if you start the conversation it lets them know its ok to ask questions.

By not talking about it you’re not enabling that pay it forward to happen and people aren’t going to become aware – MCI, dementia, Alzheimer’s shouldn’t be hidden away it’s nothing to be ashamed of.

Hubster: yes, what she said.  Stop enabling the stigma raise awareness, ask those questions and get the conversation started.

Grumpy by name – an ageing population

Grumpy is my dad, and he lives with me, the blogger babies and the hubster.  Grumpy is my support carer and has over the last few years watch my memory decline.  Really though it should be the other way around and I should be the one concerned with his age-related expectation. As Nature dictates I should be watching out for Grumpy and his declining memory, it shouldn't be my memory declining first.

Luckily, we are a very honest family and no topic is really out of bounds.  So, I know what Grumpy wants as he gets older – I’ve even found the perfect spot for his Viking funeral… and I know he wants to grow old disgracefully – and so far, successful.

I know and appreciate that Grumpy wants to grow old and grouchy and be the person he wants to be.  He’d like to pop to the pub for a beer, he’d like to eat Chinese and anything else that takes his fancy so long as it isn’t liver and onions.

I expect as Grumpy got older, a certain degree of forgetfulness.  I expect the advancements in technology to make doing everyday tasks difficult.  Which I in turn expect to play apart in Grumpies frustrations. I have very little to worry about presently Grumpy can work his iPhone better than I can work mine and he has regular chats with Cortana and Siri – though chatting to either like they’re old friends is a little disconcerting…

The big question is how to tell the difference between typical age-related changes and actual dementia-related symptoms? 

It’s important to know, because if symptoms of Alzheimer’s are detected early enough, interventions can delay the onset or advancement of the condition. In turn, this leads to a longer and more independent lifestyle.

With dementia figures predicting that by 2025 over 1 million people will have dementia and the statistical belief that 1 in 6 people over the age of 80 have dementia promotion of awareness is key now in this moment.

The below outlines how to distinguish between Alzheimer’s and dementia symptoms from age-related changes.

Was I Going Up or Coming Down? Memory loss

Memory loss is one of the most frequent signs of Alzheimer’s. It’s common for those affected to forget important dates such as birthdays or anniversaries or ask the same question several times in a short period. 

It is also normal for people to have C.R.A.F.T moments

Someone in the early stages of Alzheimer’s may take to using more and more physical cues to remember details, perhaps post-it notes or these days, even on their phone or laptop.

However, not all forgetfulness is related to dementia.

The difference is that general forgetfulness usually results in remembering again later, for example, a missed doctor’s appointment or someone’s name.

Difficulty with daily tasks

This is really important as tasks such as driving to a familiar place, using a spreadsheet after 20 years of experience, or even forgetting the rules of Monopoly or Rummy, can all be signs of dementia-related illnesses.These areas are what confuse me in my MCI.

These shouldn’t be confused with trouble involving tasks that were never learned, such as retrieving voice mail messages from a new phone or driving to a new location on unfamiliar roads.

Problems with time and place

People with Alzheimer’s often lose track of the day, week, month or year, or have problems understanding where they are. Alzheimer’s affects a person’s ability to remember events that have immediately happened, and this leads to uncertainties around time and place.

However, thinking it is Wednesday and then remembering it is Friday is not a sign of dementia.

Visual images and spatial reasoning

Some people with Alzheimer’s may have trouble understanding common signs and images. This is related to changes in the brain related to determining colours and shapes. Likewise, difficulty judging distance and timing can make driving dangerous.

Losing vocabulary strength in speaking and writing

Using words to describe an object, rather than using its common noun name, can often be a sign of early onset dementia. Someone might call a ‘torch’ a ‘hand light’, for example, or struggle to make themselves understood in conversations, and these signs need to be recognised.

Simply struggling to find the right word, before eventually finding it, is not connected to Alzheimer’s.

Poor judgment

It can be heart-wrenching to see a previously careful and cautious parent suddenly make rash and unwise decisions. A loss of brain function can make analysing arguments stressful, and many people with Alzheimer’s would rather jump to a decision to avoid the discomfort. A typical scenario would be a sales or telemarketer asking for a large sum of money for a service or charity, and the person giving them the money.

That said, everyone makes a bad decision occasionally.

Withdrawing from company, changes in personality

Unsurprisingly, those with Alzheimer’s often feel confused, suspicious, depressed, fearful and frightened. These feelings can lead them to behaviours that appear unsocial, such as turning down invitations or wanting to leave events quickly.

However, this is a very difficult situation to judge as many older people may have just found comfortable routines that they don’t wish to change. Sustained demands to become involved in events they know they won’t enjoy can feel like invasions of privacy and independence. In this case, it’s best to consider all the symptoms together.