A Dementia Story: Now where was I…

Recently, I was talking with a good friend about our family’s ‘grandma’ who is going through the penultimate stage of her dementia journey. When I told him the final stage of dementia is called palliative care he was shocked; and was similarly sure I was wrong when I told him dementia is a terminal illness.  

He then did his research and realised that dementia is in fact terminal. I reflected on this and the journey our family has been on for nearly five years since we first noticed a change in grandma’s behaviour.  

That journey has been one for all of us and has challenged (and continues to challenge) all of us in different ways. I’ve had to change my thinking about dementia and become more familiar with this illness that will probably soon become the leading cause of death in Australia. It has reminded me of the importance of getting the facts right in any life-challenging situation, and I thought I’d share some of the things I’ve learnt along the way. 

This is not an article for everyone - as explaining things clearly may cause discomfort for some. So if you’re not a fan of concise (blunt) writing, I suggest you move on to something less confronting. 

Dementia is more than a memory disease 

Amnesia is a memory illness and in some forms “doesn't affect a person's intelligence, general knowledge, awareness or attention span. It also doesn't affect judgement, personality or identity.

Dementia is a brain condition that can affect 'your mood, memory, thinking and behaviour’. The ability to create and retain memories is one part of this but dementia affects many other aspects of the way the brain works.  

Our grandma is in the final weeks or months of the middle stage and entering the later stage (outlined below). So she is still able to speak and always seems happy to see us. But she can’t fully understand what’s actually going on around her. So her ‘conversation’ is less about communication and more about expressing things in her own special way. Recently, I noticed that her hearing was deteriorating because she would often ask me to repeat something I had said. For example, I might say, "That’s a nice dress you have on." And she'd look at me in a confused way and ask “What dress is a song?”. I’ve now realised, however, that her hearing isn’t the issue – it’s the ability for her brain to process the information clearly. Which means that simply repeating it again and again doesn’t necessarily work. Sometimes, simpler rephrasing works and sometimes you just have to move on to something else. 

Yes, her short term memory is all but gone but she still occasionally remembers things from last week, or even thirty years ago. And some things seem to stick. She certainly never forgets our dog, Sebastain, who visits her regularly at her aged care home, where she’ll often remark that ‘he’s a good dog that one’. Soon, however, as her disease progresses her memory will be the least of her problems as her cognition and other primary brain functions deteriorate. From being able to shower and dress through to being able to swallow, eventually dementia causes the brain to stop working. 

Dementia sufferers are still aware  

Knowing that dementia is a cognitive disorder is really important because the way grandma’s brain works and the way a non-dementia sufferer’s brain works are very different. For example, if I forget something you can prompt me, and I will probably remember the name of the restaurant we went to for your birthday, or what the name of our fourth form English teacher was. But prompting a dementia sufferer not only doesn’t work but can cause them embarrassment and hurt.  

I have seen people trying to prompt our grandma to remember things and it becomes distressing for her. I’ve also noticed how people will shrug their shoulders and smile disappointingly when she just can’t follow what you’re asking, let alone remember key life events. I don’t know how aware she is of what’s happening in these situations but I can see in her face and feel clearly her frustration and sometimes her embarrassment. 

The last birthday grandma had before she went into care we bought her a framed poster of the night sky - as it would have appeared on the day she was married. After I hung it on her wall she stared at it and turned to me and asked what was so important about that date. Her husband of nearly 30 years tried to prompt her with fond memories, but it didn’t work. 

It’s really difficult to imagine what we all felt at that time and it’s even more difficult to hide it.  For her last birthday, we had cakes and presents but we didn’t so much focus on the reason we were there. We just enjoyed spending time with her, knowing this might well be the last birthday we can enjoy with her the same way. She did, however, manage to remark that Sebastian was a very good boy! 

Dementia is terminal 

The progression of the disease varies as much as the individuals who suffer from it. It does, however, run a relatively predictable course. Ultimately, there is no cure, so unless something else comes along, the disease will progress and you or someone else will need to make tough decisions about your loved one. Like: How will we manage visitors and practical support like bathing and feeding? What sort of palliative care will they need? What about resuscitation?  

There are many phases that depict this progression, so I’ve read up on the different models and presented them in a way they were observed in grandma.

• Early: This is the initial stage where the sufferers themselves and maybe their partners recognise a difference in behaviour. It’s not just forgetting where they left the keys, but a more regular forgetfulness or inability to understand complex directions like “we’ll drive to the club, meet your sister there, have lunch and then go for a walk before driving home”.  At this stage, I think it’s really important to treat the symptoms seriously; don't trivialise them or get frustrated with the sufferer if they can’t see the problem. Try and get a diagnosis from their local doctor and recognise the impact such a potential diagnosis means for them. For our grandma, it was difficult to have a common view of what was happening and how quickly things might progress. It’s good to do some reading and listen to some podcasts, and to form your own view. As hard as it is, you’ve got to know the facts to be really prepared.  

• Middle: As the disease progresses, people who know the sufferer will observe changes and may be struck by how varied they are. From being in the moment and being able to function perfectly well, to suddenly not being able to remember plans made a minute ago and the sufferer becoming frustrated and angry at you …and themselves. Prompting them to remember or thinking you can suddenly fix their intermittent brain issues will only cause more suffering. Now is the time to start realistic planning about what will happen when things deteriorate – and that can happen sooner than you think. For our grandma we all had differing views on what was going on and what was needed. Eventually there was no choice and she had to go into care before she hurt herself, or others. There are plenty of resources out there to consider when your loved on is going through this stage, but the most the important resources are 'each other'. Now’s the time to be compassionate because dementia puts a big strain on the carer and the immediate family. 

• Later: This final phase includes requiring help with basic day-to-day activities. This stage varies in its nature and duration from person to person. There is no ‘manual’ for grandma, or any sufferer now. At first, family and friends won’t want to let their loved one go, so any change might be resisted or misunderstood. And while they do have good and bad days, ultimately the disease will progress and no amount of special medical treatment will change that. Your grandma, your husband, your partner, your child, your neighbour, your best friend in this situation will all deteriorate, and you will have to live through that. And if you show your suffering, your anger or your frustration they will probably feel it too. Sometimes simply sitting and being with them may be all you can do – but then that may be all you and they need. Cherish every moment. 

Dementia tips 

Here are a few things I’ve learnt along the way which may be helpful… 

• Managing visitors and carers needs to be co-ordinated – best for someone to have a simple routine or schedule mapped out for everyone to see. 

• As the illness progresses you may find that more frequent, shorter visits of, say, 15 minutes are better than longer, less frequent visits.

• Get the paperwork in order: power of attorney, wills, bank accounts, electricity and internet accounts all need to be sorted. Also get the family solicitor involved early.  

• Take it easy on yourself. Caring for someone with dementia takes a lot out of you, whether you’re the primary caregiver or one of many cherished family members or friends . Every time you visit will require you to arrive with the right attitude, and when you leave be ready for a range of emotional responses depending on how things went on the day. Take the time to prepare and to debrief.  

  
  

What I’ve leaned most about dementia is the need for me to change the way I think about the person suffering from the disease – and to see beyond the memory loss and the confusion, and to see the person who’s still very much there. No matter how she changes as the disease progresses, I need to always be able to see ‘our grandma’.