MOVING ON …

Before Alzheimers or another form of Dementia touches our lives, many of us will have had the idea that sufferers are tragic people sitting hunched and drooling or ranting and raving like folk possessed.   We have yet to learn that these diseases come on extremely gradually.  In the early stages, often only family, friends and colleagues close to those who have fallen victim, will have noticed something is seriously wrong.

IN A WORLD OF HER OWN

In general, when the subject of Dementia comes under discussion, older people will frequently say (laughing) ‘Oh, I’m just like that,’ or ‘I must be getting it too,’ referring to forgetfulness.  Of course they may be ‘getting it’ but normally it’s inconsequential memory loss that comes with age.  To someone finding themselves a carer, frankly after the nth time of hearing it, it begins to grate.

Another one is ‘Oh, he seems quite normal to me’, or similar, as if you’re exaggerating.  That’s when you feel like saying ‘If only. It’s because he isn’t actually doing anything.  Come and spend a few hours with him at home and you’ll find out he isn’t normal’. I feel horrid and ungrateful thinking this, but I’m sure many carers will empathise.

People when they hear about a new victim, more often that not, say ‘Let me know if there’s anything I can do,’ which is wonderful.  Trouble is so many of us are shy of actually asking.  And anyway, everyone seems so extraordinarily busy rushing around from A to B without enough hours in the day.  We wouldn’t want to add to their burden.  Of course, there are those who will offer specific practical help and we know we can  take them up on it and, one day, we know we’ll need to.

Sorry – after a bit of a gripe, on to today’s post…

A NEW PART TO PLAY

It seems there comes a time with Dementia that we family carers don’t know what part we’re playing. My first book was entitled ‘NO COPY OF THE SCRIPT’ because it referred to unexpected crossroad events from my late teens to early forties.  Nothing went as I’d envisaged.

Of course, none of us can know how our lives will pan out.  That neat future we’d dreamed of, even planned, can turn into something completely different. When a crossroad event catapults us into a different role, for instance as a carer, we’re caught out without a script, we have to improvise until we’ve adjusted to the new reality.

CARING

Family members caring for a dementia sufferer could be a husband or wife, a son or daughter, a sibling or other close relative. Occasionally, we might be a mother or father. As the disease progresses to the middle stages, we could find ourselves playing more than one part in the course of a day.

As I have written in previous posts, Dementia from Alzheimer’s moves through various subtle but significant stages.  Perhaps now is a good time to remind ourselves with a brief outline of the four principle levels, each of which is divided into two categories:

• LIGHT – No Impairment to Very Mild Decline
• MODERATE – Mild Decline to Moderate Decline
• SEVERE– Moderately Severe Decline to Severe Decline
• FINAL STAGE– Very Severe Decline

(See the end of this post for a more detailed breakdown of the various stages as set out by Dr. Barry Reisberg of New York University)

MISSING BITS

As every AD patient is different, it’s often hard to pin down the stage they’ve actually reached. They may seem normal in many ways, ‘off-piste’ in some and decidedly whacky in others.  The best guideline is to analyse what they can no longer do as well as taking into consideration their new eccentricities.

On the face of it, this may not seem so difficult in the early to middle stages, but responding appropriately will increasingly require some careful role-playing on the part of the carer.  We need to behave as normally as possible but be prepared to switch to a parental role or even to a teacher, nurse or therapist role, The switches should be as seamless as possible and not obvious so as to avoid causing distress.  Belittling the patient with lots of tutting and sighing is very unkind and no help at all, but sometimes it’s extremely hard to keep cool.

THERAPY – TAKING THE TIME

 Here’s how it is for Leaf and I at the moment –

Although I do my best to encourage autonomy, I have to be constantly watching to make sure he doesn’t do something nonsensical, dangerous or annoying.  For instance, he may put the dirty crockery in the fridge, a boiling hob kettle on the dining-room table (having made his cuppa in it) or muddle up the dirty clothes with the clean ones and move the cat plates to new and unsuitable places.  If a pack or pot of something has been opened, he will overlook it in the fridge and go for a fresh one from the larder.  I have to keep a watch to make sure we don’t have several of anything open at the same time – phew!

Then there are behavioural oddities such as reaching across the table when we’re at the local bar to take someone else’s drink or cutting into a conversation with something completely off the subject under discussion.

CHANGING SHOES AGAIN

Another favourite is taking his shoes off and putting them on again.  If asked what he’s doing, he’ll say “Changing my shoes.” Inappropriate dressing is a common problem for many sufferers.  For example, putting on a heavy padded ski jacket to go out into the sunshine to walk the dog and wearing a hat and coat in the house.

When I’ve asked him to set the table, I will arrive with the food to discover a most interesting arrangement and recently he’s taken to laying a mat and cutlery for a third person.  Two nights ago, after dinner, he was convinced we were going out to eat and got ready to go.  Tonight he’s told me three times that friends are coming over for supper.  Luckily they aren’t as I haven’t prepared a thing.

WHERE WOULD WE GO FROM HERE?

He’s still losing things on a regular basis of course so we try between us to devise ways of keeping track of them.  Together we put reminder cards with instructions in heavy black pentel in appropriate places around the house.  Great to start with, but then he appears not to see them even though they’re right under his nose.

In between times, he’s his old self and we’re getting on famously.  It’s really weird.

I can’t pretend there aren’t little flare-ups, usually when I’ve been unable to get something across to him or one or both of us are tired.  On the whole though, I try to overlook and/or quietly correct what doesn’t matter and we might even have a laugh about something odd that he’s done. Luckily he hasn’t lost his sense of humour, so that’s a big bonus.  I can make a joke of something and give him a big hug and it’s forgotten. In his case more or less immediately.

KEEP ON LAUGHING

Dealing with a failing moment-to-moment memory isn’t easy and this will be a universal problem for dementia carers, to a greater or lesser extent.  If the person we’re caring for wants us to do something for them we will, nearly always, need to do it straight away.  If we ask them to do something – one thing at a time, as we know – it can go in one ear and out the other, literally.  We may have to ask several times before they can manage to carry it through.

Bearing in mind that AD difficulties through the various stages are cumulative, Sylvie, our Auziliaire de Vie (Home Help) and I think Leaf has reached the beginnings of Stage 5.

NOTHING LIKE A GOOD BOOK

Despite that, I’m happy to say that he still enjoys reading.  As he has often quoted from LOGAN PEARSALL SMITH:

‘People say that life’s the thing, but I prefer reading.’ 

When I ask him if he can retain what he’s read, he says without hesitation “Yes, because it’s always been important to me.”  I can only hope when the time comes, he will drift into oblivion accompanied by the characters in the books he so enjoys.

 

 

Breakdown of the Stages as set out by Dr. Reisberg for alzheimers.net:

LOSING IT BIT BY BIT

STAGE 1–  NO IMPAIRMENT:

During this stage, Alzheimer’s is not detectable and no memory problems or other symptoms of dementia are evident.

STAGE 2 – VERY MILD DECLINE:

The senior may notice minor memory problems or lose things around the house, although not to the point where the memory loss can easily be distinguished from normal age-related memory loss. The person will still do well on memory tests and the disease is unlikely to be detected by loved ones or physicians.

STAGE 3 –MILD DECLINE:

At this stage, the family members and friends of the senior may begin to notice cognitive problems. Performance on memory tests are affected and physicians will be able to detect impaired cognitive function.

People in stage 3 will have difficulty in many areas including:

• Finding the right word during conversations
• Organizing and planning
• Remembering names of new acquaintances

People with stage three Alzheimer’s may also frequently lose personal possessions, including valuables.

STAGE 4 – MODERATE DECLINE:

In stage four of Alzheimer’s, clear-cut symptoms of the disease are apparent. People with stage four of Alzheimer’s:

• Have difficulty with simple arithmetic
• Have poor short-term memory (may not recall what they ate for breakfast, for example)
• Inability to manage finance and pay bills
• May forget details about their life histories

STAGE 5 – MODERATELY SEVERE DECLINE:

During the fifth stage of Alzheimer’s, people begin to need help with many day-to-day activities. People in stage five of the disease may experience:

• Difficulty dressing appropriately
• Inability to recall simple details about themselves such as their own phone number
• Significant confusion

On the other hand, people in stage five maintain functionality. They typically can still bathe and toilet independently. They also usually still know their family members and some detail about their personal histories, especially their childhood and youth.

STAGE 6 – SEVERE DECLINE:

People with the sixth stage of Alzheimer’s need constant supervision and frequently require professional care. Symptoms include:

• Confusion or unawareness of environment and surroundings
• Inability to recognize faces except for the closest friends and relatives
• Inability to remember most details of personal history
• Loss of bladder and bowel control
• Major personality changes and potential behaviour problems
• The need for assistance with activities of daily living such as toileting and bathing
• Wandering

STAGE 7 – VERY SEVERE DECLINE:

Stage seven is the final stage of Alzheimer’s. Because the disease is a terminal illness, people in stage seven are nearing death. In stage seven of the disease, people lose the ability to communicate or respond to their environment. While they may still be able to utter words and phrases, they have no insight into their condition and need assistance with all activities of daily living. In the final stages of Alzheimer’s, people may lose their ability to swallow.

 

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