When the person living with Alzheimer’s or family member that you are caring for, alludes to an incident or person incorrectly; or seems to be engaging in an imaginary world – resist trying to bring them back to reality! In some circles this statement may be considered politically incorrect, but, were I to choose between the peace of mind of a person for whom I am caring – and PC, I would always choose the former. Do we really want them to grieve anew every time we correct them? Do we wish to sow the seeds of confusion and frustration each time we contradict their misconceptions – I think not! So how should such incidents be handled? Some examples are as follows:
Excuse and delay
I used to work with a person with Alzheimer’s in a Residential Care Home in Pietermaritzburg. She would quite regularly seek to leave the premises, saying that she wished to visit her mother whom, according to her, lived just down the road. (In actual fact her mother had lived over 4oo miles distant, and had died a number of years previously!) But what was I to do? Should I repeatedly inform her that her mom had died and had not even lived in the same town as the one in which the Care Home was situated? Why? So that she could suffer afresh every time she learnt of her mom’s death, or to increase her confusion and fear, every time she struggled to understand why she was now in a strange town? And when she said that she needed to go home to feed her pet dog… should I repeatedly remind her that Bonzo had been run over by a car five years ago? – I think not! So how should incidents such as these be handled?
When asked if she could leave the premises in order to visit her mom, I would for example say the following… “That’s amazing! Actually your mom phoned me this morning and said that she was going away for a few days… she sent her love and said that immediately she returns, she will contact us – then we can go and visit.” The excuse was generally accepted and the crisis of her wishing to leave the safety of the Home was averted.
You don’t pay me anyway
Mrs. Simpson, a wonderful lady suffering from Alzheimer’s disease, lived in the same home. Stereotypically she liked to wander. When my busy schedule allowed, I would accompany her on a stroll around the block, sometimes calling in at another Care Home en route, in order to meet and talk to their manager. Mrs. Simpson was a joy to have in our home, apart from her wandering habits, she was totally at odds with the normal perception of a dementia sufferer and I have a numerous occasions remarked that I wished we had 100 such people to care for – rather than some of the elderly residents that we actually looked after.
One day on finishing work, as I was walking towards the gate at 16h30, I found her walking beside me, seemingly also intent on exiting the premises. Aware that Alzheimer’s sufferers, for their own safety, cannot be allowed out unaccompanied, I sought to distract her. I asked her where she was going and she responded… “I am going home. I have finished my work for the day”. I then asked her where her home was. Pointing down the road she said… “I live down there – with my father”. (This was incorrect as she did not live near the home and her father was no longer alive!) She carried a lunch box in her hand as well as a coat and hat. (I don’t know where these items came from but AD victims are sometimes renowned for picking up odd items; in these particular circumstances quite appropriate for returning home from a day’s work). Seeking to distract her I responded by saying… “But your shift only finishes at 19h00 – if you leave now, I won’t pay you!” Looking at me slightly derisively she quipped… “But you don’t pay me anyway!” And so I was reminded yet again not to judge a book by its cover; not to assume that very little goes on in the minds of Alzheimer’s sufferers, for she had certainly retained a good sense of humour, as well as the ability to engage in
adept repartee?
Conclusion
Whilst in the early stages of the disease, assisting a patient or loved one, to engage with reality may be both acceptable and even desirable, in later phases this is often no longer the case. In the earlier phases such reality checks even assume the form of answering questions posed by the AD sufferers themselves, as they struggle to cope with their confusion. I.e. the truth is told at their request, as they desperately seek explanations and clarifications.
In the later stages this no longer applies – it is kinder to join them in their world. By then the degree to which they have become immersed in their imaginary world precludes their accepting truths without the accompanying pain of realizing how far they have strayed off course (if they are by then even capable of once more embracing reality?). When the Alzheimer victim or family member that you are caring for, alludes to an incident or person incorrectly – don’t try to bring them back to reality! And very often the reality checks are motivated by the needs of family or Carers, rather than those of the patient themselves. Trying to reason with someone who has Alzheimer’s often just ends up frustrating both parties!
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“The world of reality has its limits; the world of imagination is boundless?”
Jean-Jacques Rousseau
Blog post submitted by Henry Spencer