The Two Train Tracks When Dealing With Dementia

When you love with someone, care for or care about someone with dementia, changes are you have become a caregiver/ informal carer. In this talk, I suggest how you can walk two paths at the same time. On the one hand side you allow your emotions of grief, anger and guilt to be and on the other hand, you shift your focus, also, to what can we still do, what are opportunities and positives?

Transcript

This talk is for people who live with,

Care for and care about someone who has dementia.

During my fortnightly lives here on Inside Timer and at other times and places,

I constantly meet new people that qualify as being carers for someone with dementia.

With this I do not mean professionals,

But all the others that are suddenly confronted with changes in a person that they are close to.

For all comes a point that the changes in the other become so pronounced that a visit to a physician is required,

Which is often followed by a diagnosis of dementia or Alzheimer's,

Vascular or another subtype.

At this point in time,

You will receive an information overload,

Or should I say emotion overload.

The latter is probably a more accurate description,

Because along with the diagnosis,

So much more is communicated.

Unfortunately,

Often there will be an explicit or more subtle message of life as you know it is over,

Which may also sound like there is nothing we can do,

You may as well admit yourself to residential care soon or give up work.

This is a devastating message on top of the diagnosis,

Needless to say.

Because it makes people feel even more deflated and helpless than the diagnosis would do as a stand-alone message.

I am the camp of people that would like to focus on what is still possible.

However,

Over the years,

I have learned that if presented a certain way,

This can border on toxic positivity,

Which is as undesirable as toxic negativity.

Don't worry and you may as well give up are equally unhelpful.

Hence,

I have started talking about the two train tracks when dealing with dementia.

The image of train tracks came to mind and of course is often used as a metaphor,

Because I feel the grieving is a distinct path as is the focus on possibilities.

But they are not mutually exclusive.

Let's imagine the left side of the track as grief and other overwhelming emotions.

The right side of the track is hope and positivity.

When we walk on train tracks,

Where do we find ourselves walking?

Right on the railroad ties,

The middle between the two tracks.

Sometimes we may balance on one of the tracks,

But never long as it is challenging and tiring.

This is what I propose when you care about someone with dementia,

To walk the ties.

The ties that support and connect the negative and the positive.

First of all,

This means a full acknowledgement of the emotions that you feel in this particular moment.

I already spoke about the time around diagnosis,

But of course there are many more landmark moments when living with dementia.

For example,

The moment the person loses a function that was essential to who they were.

For example,

They are no longer allowed to drive.

Or when they forget your name.

Or when somebody moves into a facility.

The list goes on.

If you are listening and you feel this is relevant,

You might want to start an emotion journal,

Even just for a day.

Mapping what you feel throughout this day or a week.

It could be very brief.

For example,

When I woke up I felt sad,

As always,

Because reality hits me hard.

In the morning I felt envious when my friend told me she was going out for coffee,

And I wish I had the time to do this.

Then I felt guilty even thinking this.

In the afternoon I had a proper laugh when my son called and shared a funny anecdote about my grandchildren.

In the late afternoon I always feel agitated because my partner always plays up at this time and starts pacing around.

I felt pleased that I managed to cook a dinner that tasted good.

Around 9 o'clock I felt exhausted and went to bed.

This practice is mostly aimed at you processing the day,

But also gaining insight on the range of emotions that you may experience.

I find that mindfulness is an extremely helpful technique for living with emotions.

First of all,

I think it's important to note that there is no such thing as positive or negative emotions.

No good or bad,

Right or wrong.

All emotions have a function.

Listening to my mock-up emotion journal,

You probably felt that everything sounded reasonable.

This is important,

Your emotions are valid.

What you are living with today is an immense load,

And it can be so overpowering.

The second thing you may notice is that when written down in such a form,

It almost deflates the emotions.

Hearing them described as I did,

Makes them sound like facts,

That are allowed to be,

That just were.

Mindfulness does not urge you to suppress,

Deny or overcome emotions.

It invites you to welcome them into your life.

To say for example,

I feel immensely guilty for making a plan to do something for myself,

And leave my loved one with dementia to their own devices,

Or in respite care or with another family member.

This makes sense,

And I am allowing myself to feel guilty,

Yet I will still go out and do what I need to do for myself.

I am not going to force myself to not feel guilty,

Which is impossible anyway.

The guilt will be part of this day.

At the end of the day I will see if there was space for other emotions,

And I will make a conscious choice if I would like to do this again,

Possibly in another form or shape.

Fighting your emotions will drain your energy with limited results.

It is the same as the experiments where psychologists asked study participants not to think about white bears.

The participants reported a loss of freedom,

Because of the restriction.

Consequently they fought more of white bears to re-establish their autonomy.

I also see a less conscious response.

The minute you are asked not to think about a white bear,

You will be thinking about a white bear.

So when you tell yourself,

I should not feel so,

And you fill out which emotion,

You are already engaging with the emotion.

Not only will you feel the emotion,

You will feel the added burden of failing at not feeling the emotion.

When we let emotions be,

They become less powerful.

Let's switch over to the other train track,

The one of positivity and hope.

What I am suggesting is that in addition to any feelings that are generally seen as negative and unwanted,

We can simultaneously focus on positives.

With this I mean,

For example,

Focus on what a person is still able to do,

Without disregarding what they might have lost.

What frequently occurs is just a deep grief or sadness or frustration about all the functions that a person has lost.

Now,

In accordance with what I said before,

These emotions are a given,

And they are appropriate.

It would be a more remarkable response when a person says,

Oh my mother can no longer cook,

It used to be her life and we all enjoyed it so much,

But hey,

You know what,

That's life.

It is sad that your mom can no longer cook.

It is sad for her that she can no longer engage in a favourite activity.

It is sad that everyone else can no longer enjoy the meals and in turn mom can enjoy everyone enjoying the meal.

This is big.

However,

Cooking does not have to stop when mom can no longer cook independently.

Now that may sound like a paradox,

Let me explain.

And I will stick with the example of cooking.

I looked into some field data recently describing a woman who could no longer cook,

Because she had almost burned the house down,

More than once.

The family decided it was no longer safe and a close family member has stepped in.

Result,

Safety.

And mom robbed of an important daily activity.

Unfortunately,

We often think black and white in these kinds of situations,

Especially when safety issues come into play.

Now,

I'm not advocating that mom should have carried on as before.

However,

There are a hundred alternatives between cooking independently and not cooking at all.

In this case,

Because a family member already stepped in,

Could they cook together?

This may sound like more work for the family member and it will be in the beginning when together they work out what each of them is able to do.

But if they find a routine,

Cooking together will be faster,

More enjoyable,

And mom is not sitting around feeling useless,

Likely to deteriorate further and faster because of having nothing to do.

What would cooking together look like?

Let me just do an open brainstorm.

Cooking starts with making a shopping list.

Can mom check ingredients that you read out loud?

Can she tell you or jot down the things you need?

Can she go shopping alone or can you go shopping together?

Can she put items in the cart when presented with them one by one in a relevant section?

Can she find her way to the different sections?

When you are home,

Can she put the groceries away independently or being handed them one by one with directions of where they should go?

When the actual cooking starts,

Can she take out the ingredients?

Can she wash the vegetables?

Can she chop the meat?

Can she boil the water?

Can she stir fry the ingredients?

Can she add pasta to the water?

Can she wash rice?

Can she measure the rice and how much water to put in the rice cooker?

Can she peel potatoes or slice them?

I can go on and on,

But I'm sure you get the gist of it.

Cooking a meal consists of so many small steps that mom is bound to be able to do some of them.

It just requires some time to find out which ones.

And creativity to keep thinking if not this,

What then?

What if you answered no to all of the above questions?

My first question would be,

Have you tried it or is it an assumption?

If you have tried,

There are still options.

Can she sit with you in the kitchen?

Read the recipe to you or read the newspaper to you?

Operate the radio or navigate the playlist on Spotify?

Can she set the table and possibly with help of labels of what is where and some templates on the table for what goes where?

This is an illustration of the right track,

One that will give you hope,

Spirit and joy.

It empowers you to think like this.

Despite everything that we allow to be,

You do not have to roll over and give up.

So whilst feeling everything you feel,

You can go on this exploration of what can we still do.

You walk the middle of the tracks.

And some days you are exhausted,

Uninspired,

Angry and you will end up quickly cooking by yourself.

And that's all right.

Another day you will manage to create more time and start working together.

Thank you for listening to this talk.

Please feel free to share suggestions and requests.

I'm happy to help where I can.