Carers perspective

Dementia is the result of diseases of the brain. There are many known diseases, many of which have variants. The effects of the disease, or combination of diseases on each individual are infinitely variable. The effects result from their general health, age, life experiences, ethnic backgrounds to name but a few. Below is one person’s unique experience and must not be considered typical because there is NO typical or general case.

Pre diagnosis phase

(No longer able to drive due to other factors: an example of some of the external influences which affect the individual: loss of independence).

Observations by me suggested my wife was forgetting things like laying the table with knives facing backwards. There was an inability to initiate actions, such as on a nice sunny day, “let’s go to out to…”

In retrospect there was a change of character a year or so before the memory problems, around the time my wife had a severe heart failure, resulting in the heart now only operating at about 50%. There is much confusion in the diagnosis of brain diseases at the moment with depression often being diagnosed and “treated”.

With my wife apparently unaware of the situation, and with no significant treatments available, no further action was taken although I did discuss the situation with our GP. (“The lights were on but there was no one home.”)

Eventually my wife recognised that she had a problem and off her own bat decided she needed to see the GP about it. A series of fairly basic memory tests in the surgery suggested that at that time her memory did not warrant further investigation. A year later her memory had worsened. She failed the surgery test and was referred to the NHS mental health team for blood tests and MRI scan. The results confirmed a mix of Alzheimer’s and vascular dementia.
Post diagnosis - Phase 1

Delivering a diagnosis of diseases resulting in dementia is devastating, seen as a long slow decent leading to death. It is in my view a prime responsibility of those giving the diagnosis to have in place at the same time a support mechanism. The patient and carer need to be taken to one side, with time to cry, have the diagnosis explained and given all the support needed to put their feet back on the ground. (As cancer patients now have).

At this stage my wife was able to understand what was required and agreed to take part in the Brains for Research programme. We could hold a meaningful conversations most of the time. It was at this point we raised and registered the Power of Attorney for Financial and Property affairs.

Generally at this stage my wife would appear normal to other people unaware of her condition. My aim was for her to continue as normal a social life as possible. As the disease progressed a discrete word with her social contacts was all that was required. We carried on as normal as possible with social events: the theatre, eating out etc. She was able to be left at home on her own for an hour or two, although towards the end of this phase she would not be able to fend for herself. (This is when people become vulnerable and safeguards are necessary with neighbours keeping a watchful eye, or being asked to house sit for a short while.)

Minor events which, in normal circumstances would have been corrected, were left unchallenged as this was part of the disease. Unobtrusive corrections to activities, e.g. checking the right soaps were being put in the washing machine, were adopted. The tendency to repeat things was getting progressively more frequent.

Generally the actions were to accept the situation and adjust responses reflecting the need to keep things non confrontational and calm. (For most of the time! If necessary leave the room and walk round the garden, counting to 10+!!) Most of our social events were undertaken but on occasions there was a need to explain to those around what the problem was.

Increasingly there was an inability to answer questions which included for example choosing from a menu. This was obvious during two cruises we did, but the table members accepted the situation and treated us normally.

My wife was able to go independently to local shops on buggy and handle money, but did not deal with her/our accounts.

Post diagnosis – Phase 2

This is a where my wife could no longer be left alone at home to avoid risks.

The house had to be modified as we once did for the children, i.e. dangerous chemicals locked away, door and gate bolts added etc.

With minor infections my wife would stay in bed all day unable to understand how she felt, but expressing “I’ve had enough, just let me die”, or “I don’t want to wake up”. The solution was often in the form of using a “distraction”, such as “let’s go out to …..” when often whatever was causing the lethargy was forgotten. Contacting our GP (by phone) at times to discuss and try and understand the situation was essential, when often an infection was a possible cause.

My wife’s overall condition continued to decline to the point that she was unable to find words and understand their meaning. When asked to get a cup would come back with the first thing that she recognised, possibly a tissue!

The social scene became more difficult with loss of control of understanding her situation and a loss of short term memory.

During this period it is the carer who needs to ensure that they have support. In my case I was introduced to the Admiral Nurse, with whom I had regular phone calls as and when medical and behavioural crises arose. At the same time I had established a named Adult Social Services individual in whom I had confidence concerning advice on care support.
Post diagnosis - Phase 3

The diseases are relentless and towards the end of phase 2 my ability to cope was being challenged and it became clear that my wife now needed 24/7 care. I believed that there were too many risks at home and that with only the two of us in the bungalow my wife needed more stimulation. After a particular crisis three weeks respite care was arranged in a dementia residential care home in the village. Towards the end of the respite break a room became available at the care home. After much discussion amongst the family, the care home, social services, the Admiral Nurse and the mental health team I took the decision that the time had come that the specialist care home was in my wife’s best interest.

After 50 years of marriage to make the decision was challenging, particularly when my wife was incapable of communicating and expressing her wishes. As a carer you will have to deal with the “guilt feeling” that will remain with you for placing your loved one into care, particularly in a care home. It is difficult to rationalise your perception of someone’s quality of life when they cannot express their wishes and at some times cease to recognize you.

All I can do is to try and ensure that my wife is well looked after, contented, not agitated, and try and engage as best I can.

Phase 4

Whilst not experienced by me as yet, I can clearly see that there will be an “end of life “phase. It helps if the wishes of the person with dementia have been discussed and documented whilst they still had all their faculties. Equally, discussions with other members of our immediate family have been essential.

Key topics to be considered are:
  • Is there a “living will” in place for the person with dementia. At the same time consider your own wishes in case you ever experience loss of mental capability and speak to your GP about setting up your own “living will” (Many carers who have cared for someone with dementia have raised “living wills”, including myself.)
  • Should a “do not resuscitate” (DNR) order be considered? In my case this has been discussed with family, our GPs, and the Care Home Manager.