Finding love again

With over 200 blogs on D4Dementia now, some of them approaching 7 years old in May this year, I've decided to spend my 2019 year of blogging by re-visiting some of the topics I’ve covered previously, throwing fresh light on why they remain relevant, and updating them with some of my more recent experiences. This month, I want to look at love.

I finished my January 2019 blog with a quote that talked about how a person who is struggling to express themselves, perhaps because of their dementia, is:

“Ultimately looking for understanding, appreciation and love.”

Of course that could be said for all of us regardless of the circumstances surrounding our health, but a diagnosis of dementia brings the importance of love and expressing love into an even sharper focus, as I described in my 2014 blog, ‘Amour’:

“Dementia taught me to tell my dad I loved him every time I saw him. I say dementia taught me because a diagnosis of a terminal disease makes it imperative that you make the most of every moment. There isn't time to be bashful - you will have a long time to regret what you didn't have the courage to say or do.”

But that isn’t to say it’s always easy to express love or feel love when dementia is part of life. Last year I met a lady who very candidly spoke about her relationship with her mother, who is living with dementia, saying that she found it very hard to love her mother now.

Many people might harshly judge this lady for a comment like that, but on further exploration it was clear it was a remark that came from a place of immense love and a longing for that love to be reciprocated. The lady felt bereft because of her perception that her mother didn’t love her, but when we reflected on her time with her mother, it became clear that she was missing very subtle signs of her mother’s love, purely because they weren’t the obvious expressions of it that she’d been used to her whole life.

This lady viewed the changes in her mother only through a negative lens. She spoke about her mother’s repetitive speech, her lack of interest in previous hobbies, how she no longer wanted to eat foods she’d always enjoyed and how she constantly walked, making her daughter feel that she just wanted to get away from her.

But we found a flip side to this. The repetitive speech was an opportunity for the lady to reinforce the information her mother needed, and that could come from a place of love if she realised the trust her mother was placing in her to provide that information in a calm and consistent way.

The lack of enthusiasm for previous hobbies could be interpreted as an opportunity to try new things, finding common interests that they could enjoy together, and likewise with trying new foods. We also talked about walking, and the joy that could be found in walking together, exploring the environment and taking notice of the details around them, something that is known to be very good for improving wellbeing.

Like many people, this daughter saw her mother’s walking through the negative concept of wandering (not a phrase I like or agree with), which is a topic I wrote about in my 2012 blog ‘Going Places’:

“Wandering suggests aimless moving from place to place without any clear objective, but that is not the case in people with dementia. I have written previously about the need to appreciate, understand and connect with a person who has dementia within the world THEY are living in. It may be a world from their childhood or their years as a youthful adult, it may be a happy place or a sad and worrying place. Wherever it is and whatever the circumstances, the person with dementia may well feel compelled to do certain things, and have great purpose and direction in doing them, however fleeting that may be.” 

For this lady’s mother, walking was something she needed and wanted to do, not something to be in any way suppressed as her daughter thought it perhaps should be. Supporting someone you love to do something that they love is in itself an act of love. Not one with big declarations or fancy ribbons attached, but one that is far more meaningful when you consider that many people who are living with dementia and want to do things like walking are prevented, sometimes forcibly, from doing so.

I think, and hope, that I helped this lady to find a different perspective to the one of desolation and isolation that she was feeling. Accepting that dementia sometimes changes our perception of loving and being loved is a tough realisation, but it is one that provides a degree of peace, and sometimes even hope – hope that you can still have those moments of connection with the person you love, however fleeting those moments may be, and feel that surge of emotion that only love can give you.

As I said in my Amour blog:

“During those difficult moments, the sadness, the emptiness, the emotional rollercoaster of being a carer, it's the love you feel that gets you through.”

Until next time...

You can follow me on Twitter: @bethyb1886
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Repetition, repetition, repetition

One of the symptoms of dementia that those around the person with dementia find most difficult to cope with is repetition. Families and professionals alike often express frustration, leading onto exasperation, which often ends in irritation and possibly even an argument with the person who has dementia.

Repetition is a very common symptom of dementia. My dad went through a stage of repeating the same questions, and as his communication ability diminished the repetitive questions were replaced by saying the same words or phrases over and over again. To begin with those words or phrases would sometimes bear some correlation to the situation or conversation going on at that time, but as the years went by they became completely random.

The patterns of my dad's repetitive speech often left me wondering what message he was trying to convey to me, and that is arguably one of the most difficult aspects of repetition for the people around an individual with dementia. You desperately want to unravel the meaning behind their words and respond to that with an answer that provides the reassurance they may be looking for, but without being able to move the conversation on the prospect of finding a resolution that gets to the heart of what the person with dementia needs or wants becomes a distant one.

As someone observing a loved one's life with dementia, it is impossible to truly know the impact of repetition on the person who is living with dementia. I would suggest, however, that many of the feelings that a carer is experiencing (frustration, exasperation and irritation) are potentially also being experienced by the person with dementia too. The difficulty for the person with dementia is that they don't necessarily have the ability, either verbally or through physical demonstration (body language or expression), to make those feelings clear. That puts them at a distinct disadvantage to those of us who are family carers or care workers.

It's interesting that as a carer of a person with dementia, the carer's feelings are often seen to be somehow different from the person with dementia, but the emotions that go alongside coping with repetition - as with so many other symptoms of dementia - can be remarkably similar for the person with dementia and those around them, giving us more in common than we often realise.

Developing coping mechanisms is a key attribute for a carer, because so many people simply don't cope well with constant repetition – examples of coping methods include taking a quick ‘time out’ or deep breathing exercises (these may sound trivial, but they do work for some carers). Patience is another key attribute. I’ve never yet seen or experienced a resolution to a person’s constant repetition by losing patience with them. Yes they may have asked what the time is, requested the toilet or questioned when the next mealtime is on 20 occasions already, but getting angry is unlikely to prevent the next 20 requests. Equally, telling the person that they’ve already asked that question or said that statement isn’t likely to help end their repetition because they may very well not remember what they said previously.

Of course it’s easy to say ‘exercise patience’ – repetition can be incredibly mentally draining to both listen to and constantly respond to  – but alongside patience there are other techniques that can be helpful, although I’d stress that as each person with dementia is an individual, what will work well for one person won’t necessarily have an impact with someone else. 

Techniques to try include:

Embedding your response: Persistent questioning about the time can sometimes be resolved by providing a ‘dementia friendly’ clock or similar item, enabling the person with dementia to track time themselves which helps facilitate their independence. Coupling that with a day-by-day board that enables the person to track what is happening when can help with questions about daily events, like mealtimes, whilst good signage can assist with enabling the person to go to the toilet independently without having to ask. However, visual aids only work if the person has good vision and the cognitive ability to absorb what they are seeing, so make sure this is checked – move to audible reminders if hearing is a stronger sense than vision. Likewise, if the person doesn't have the mobility to meet their needs (like going to the toilet), then your help will always be required.

Distraction – Changing the conversation: Some carers successfully use distraction techniques to move the conversation away from whatever the person with dementia is repeating and towards something else. This can work, although sometimes moving away from a topic causing repetition can then mean that wherever you steer the conversation to next will become a topic for repetition.

Distraction - Activity: Introducing an activity, be it something to do with daily living (“Let’s make a cup of tea,” or “Let’s do some housework.”) or a hobby that the person enjoys, can be helpful in taking their mind off whatever the topic is of their repetition. Offering the right activity for the moment is key here, and may need to be something more energetic, like going outside or making the bed, or could be something much more sedate, like reading a book together or singing songs.

What I personally wouldn’t advocate is ignoring the person. Some people use this as a technique in the belief that the person with dementia will simply give up the repetition when they don’t get a response, and by responding you only fuel repetition further – a bit like the parenting technique where you leave the child to self-sooth. However, in relation to dementia I dislike this as a technique because apart from anything else it feels disrespectful. It also does nothing to increase the person’s trust in those around them, doesn’t encourage their independence in any way (even though it may be used in the false belief that it does increase independence), doesn’t help to meet any unmet needs that they may have, and runs the risk of something vital being missed.

The risk, when repetition becomes very monotonous and wearing is that a carer becomes so immersed in coping with it that vital clues are ignored, which might result in an episode of incontinence or not recognizing when something is wrong with the person’s health. When repetition takes the form of answering yes to every question asked, or no to every question asked, it might seem reasonable (and easier) to take those answers at face value, but it may simply be that the person is repeating an answer because that’s their current pattern of repetition, rather than because they really intended to give that answer.

This doesn’t mean that the person with dementia is being untruthful, it’s just how their dementia is manifesting itself at that time. Always be alert that an answer on a key issue, like how a person is feeling in relation to their health, should also be accompanied by the carer observing the person to make sure vital opportunities – for example to spot the deterioration of an infection - aren’t missed.

One final key point about repetition is that it is rarely static indefinitely. What is the sole topic of repetition one week can easily change the next week, and sometimes repetition stops as suddenly as it began, in the same way that many dementia symptoms come and go. When all else fails, responding with soothing kindness will at least ensure that you have tried to alleviate any distress being felt, and that you have appreciated the key point that the person with dementia may be feeling just as unhappy about their repetition as you are.

Until next time...

You can follow me on Twitter: @bethyb1886

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Talking the talk

Through my work I often encounter people who say that they cannot talk to someone who has dementia. They are scared to talk to them (as I wrote about here), don’t know what to say, are unsure of how they will respond, or simply can’t see the point. Many times I’ve heard, “Well it’s not like they are going to remember what you say is it?”

I would argue, however, that these attitudes reflect far more negatively on the people expressing them, than they do on the communication skills of the person with dementia who they are seeking to avoid a conversation with. It is a very sad indictment on our own abilities if we cannot find the time, make the effort, and actually learn how to have a meaningful conversation with a person who has dementia.

It doesn’t need to be a full-on debate, a few words can provide immense insight, but how, you might ask, are you going to do that when someone’s dementia is advanced to a point where they are constantly repeating themselves, speak words that you cannot understand or make noises that don’t even represent words? In the last few years of my dad’s life, his noises became more and more dominant in his communication armoury until they were the only sound that he would make, unless of course we put a song on that he loved, then whole words that were perfectly timed with the music would flow from his lips.

So much about communication with someone who has dementia, especially in the more advanced stages, is about the approach that you take. You can assess a situation and decide that you can’t work it out so you won’t bother. Or you can adapt (try singing your conversation rather than speaking it), learn to listen carefully, and choose topics that might spark your loved one’s interest or engage in activities with them that could naturally promote conversation. Often once a song had reminded dad of his vocabulary, the noises he previously communicated with would be temporally shelved in favour of clearly articulated words that, due to their rarity, brought such joy and happiness to everyone around dad, and seemingly to him too.

Those moments were the bright spots in what were often long days of effectively a monologue from us, but it wasn’t always like that. Earlier in dad’s dementia he went through a stage of constant repetition, and I have met many other people with dementia who similarly feel the need to say the same things over and over. Thinking about this logically, it’s not entirely unexpected. If someone cannot remember what they have just said but still have the thought in their head, they are likely to repeat it. Equally, if they feel that they are not being listened to or acknowledged, they may seek to constantly reaffirm what they want you to hear. It can also be a symptom of boredom, a lack of engagement in their surroundings, or a need to break out from their environment to experience new sensations.

Frustrating though constant repetition might be, the worst thing you can do is try to fight against it. Getting angry, being dismissive or rude won’t help anyone, and it’s unlikely to stop the repetition that you are finding so irritating. Learning to go along with it, rather than seeking to correct it, will be a lot less stressful in the long run, and will also avoid that terrible guilt every carer has felt when their exasperation has led them to say something that they never meant, but that may potentially have hurt the person that they love and care for.

Dealing with misunderstanding, as a result of muddled words or words that you cannot fathom, can be equally challenging and lead to very similar emotional fallout. For a long time my dad kept saying something that sounded remarkably like ‘Obama’. Bizarrely he was doing this long before Barack Obama became US president, leading me to wonder if dad actually had a sixth sense about the result of the 2008 American election!

I never did work out what he was trying to tell us, and sometimes guessing can lead you down a path that is even more baffling than when you originally heard your loved one say the word(s) that you cannot understand. I eventually came to the conclusion that dementia can produce a language all of its own, related perhaps to the world that the person with dementia is living in, or possibly entirely unconnected – like an involuntary reaction that has no foundation or meaning and cannot be controlled.

So how do you cope with all the vagaries that come from communicating with someone who is in the more advanced stages of their dementia? My advice would be to apply the 3 golden rules:

1) Don’t ask questions

2) Don’t contradict the person

3) Learn to love their repetition

Of course like all rules you will break them, we did on countless occasions, but never intentionally – it isn’t only people with dementia who can have an involuntary reaction to a situation. We tried to make up for our shortcomings by allowing time, showing patience, keeping our expectations in check and our minds open to what we were hearing, remembering that if something left us bemused, frustrated or hurt, that what the mouth may say wasn’t necessarily a reflection of how the heart was feeling.

Until next time...

You can follow me on Twitter: @bethyb1886

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