The ‘Silent Dis-ease’

Words Val Ball and Ruth Manson-Bishop

“She almost thought she’d said the words aloud, but she hadn’t. They remained trapped in her head, but not because they were barricaded by plaques and tangles. She just couldn’t say them aloud.”
― Lisa Genova, Still Alice

Since 1983 I have been dealing with the elderly, dealing with management, supervision and observation of the geriatric phase of life.  I have always had – and still have – a fascination for the changes brought on slowly by Alzheimer’s and dementia.  It can be argued that these two diseases are different; however their symptoms are intertwined and both require the exact nursing care and understanding from both the professional and the family members.

There are many areas of this disease that can be written about, covering mental, medical, physical and scientific discussions.  Having a home specific to caring for Alzheimer’s and dementia, I am always amazed by the lack of information and expectancy by the family members. What to expect now and for the future of a loved one and how this will impact the family’s life is what I am about explain. From here on the two diseases will be referred to as the disease.

This is a disease that gradually takes over the mind and body of your loved one; it is a disease that, unless you have it in your family or work with it, you do not understand. The day to day handling and management of someone with this disease is only understood by those who live with it or care for the person. This also applies to professionals who have all the scientific knowledge of the disease but do not understand what the family members or those living in the same environment for 24 hours a day have to endure.

Initially the patient, spouse or children find excuses to explain away the forgetfulness and memory loss; this is a gradual onset and so becomes the norm.

Slowly the daily routines such as general hygiene, changing of clothes, putting things in the wrong place, not preparing or eating of meals becomes the norm. Repeating the same story over and over can become extremely annoying to others. 

Sleeping habits begin to change, difference between day and night changes, causing confusion, wandering around the house, opening doors, unpacking cupboards etc. This is when patients could become a danger to themselves.

Incontinence slowly creeps in and reasons for a wet bed begin to emerge. “Someone threw water over me last night, the cat weed on the bed,” etc. This slowly becomes more evident when incontinence is carried over to the day and diapers need to be applied.

These are areas which are usually hidden by the supportive spouse, assuring the family that all is well and they are managing well. Maybe just a hiccough here and there but all is fine.

Then something happens, a fall, a stroke, an infection (usually bladder), often the unexpected passing of the supportive spouse and things can change overnight.  Suddenly this person with the same face becomes a different person, no longer the loving, supportive, reliable mom or dad; all the changes over the last year or so fall into one.  

Children realise that all was not fine, they now see the difficulty in dealing with a loved one who may no longer know who they are; aggression is very common as reality and rationality slip away.  Mothers and fathers now have to have their diapers changed, be washed by their children and possibly have to be fed. Someone has to watch and listen at night in case the wandering begins.

I see the faces of families who bring their loved ones in, how devastated they are as they had always promised never to send them to a facility. However, this disease can only be managed up to point in a home environment and it does become a situation for 24-hour nursing by people with understanding, dedication and genuine compassion.

There is misunderstanding of what is transpiring in the mind and body of their loved one; misunderstanding of how the general pattern of life has been forgotten ‘forgetting all that has been learnt through a lifetime’; misunderstanding that their once quiet, loving mother can now have a profound personality change; as the disease progresses, the social barriers and filters disappear.

There are too many details to discuss under the heading of Alzheimer’s / dementia. The list of behavioural patterns is endless: There is no routine, they can no longer dress themselves, hold or follow a conversation or perhaps even know the habit of opening a door.

Usually, when a resident is brought in, the staff will be told: “We don’t know what has happened, and our mother/father was absolutely fine until two weeks ago.” The symptoms slowly begin to take over and the body as a whole deteriorates from walking to having to be in a wheelchair, fed meals, being non-communicative and not recognising loved ones.

This is because the silent disease has come on so slowly. It is only later in conversation we will overhear family members reminiscing on events that took place a year or so ago and realising how they had ignored or accepted the new norm.

It is a devastating disease; very seldom do family members understand what is going on or even have an idea of what lies ahead.  One has to be very strong and understanding, seeing one’s loved one in this state day after day.  Compassion for both patient and family members is paramount. 

This disease takes families by surprise, there is nothing on the surface that makes anyone understand what is going on and why.  There is not sufficient knowledge about the consequences of the disease and what lies in the future for loved ones and family members.

More needs to be done from onset or first diagnosis of the disease.  Families must be encouraged to investigate and to acquaint themselves with the knowledge of what lies ahead and mainly to be aware that the symptoms can change overnight.

Finances: Usually the biggest obstacle is getting finances in order, when bank accounts and computers are not readable, pin numbers have not been handed down, signatures are forgotten and debts such as municipality accounts have not been paid. An elderly lady paid her gardener R1 000 daily as he had cottoned onto explaining to her it was the last day of the month each day.  Stories of money being given away to strangers are common knowledge.  

The following need to be done by the families at initial onset:

  • Ensuring the financial situation of those affected, giving power of attorney or curatorship to whomever will be responsible for all financial decisions.
  • Making of a Last Will and Testament.
  • If able, talking to whomever is affected about the possibility of being transferred to a facility better equipped and more professional to assist in all needs.
  • Making decisions on sale of property, vehicle, investments etc.

It must be remembered that geriatric dementia is an umbrella term that refers to a chronic and usually progressive deterioration of mental abilities and intellectual capacity, due to changes in the brain such as widespread loss of nerve cells and the shrinkage of brain tissue. Since dementia is most commonly seen in the elderly, it is often erroneously considered to be part of the normal ageing process. However, it is important to remember that dementia is a condition that is a result of a disease (or trauma) and does not occur in a healthy person simply because of old age. Ed.

Odyssey met up with Val Ball of The Vales and asked what the three primary considerations families and responsible parties should take cognisance of when meeting with a facility to establish if it is adequately equipped to handle geriatric dementia patients as the disease advances.

“It must be understood,” said Val, “that in dementia is a process of unlearning all that has been learned in terms of social norms, societal expectation of behaviours. The patients have often lost all remembrance of ethical boundaries and have no filter. This in itself is an indicator that conscious and quality care of advanced dementia requires in-depth understanding and forward planning from stakeholders in geriatric care facilities. This needs to be a vocation for both qualified nursing staff and caregivers alike and not just another nursing or caring job.

From our discussion these are some of the considerations when selecting care:

  1. Do the owners and/or stakeholders the geriatric care facility have the compassion, competence and understanding of geriatric care and in particular dementia to ensure conscious and quality care?
  2. Regardless of nursing qualifications, geriatric dementia care is a vocation and should be staffed by not only qualified personnel but, rather, experienced personnel. Enquire as to staff turnover: Should it be high, the warning bells should sound. Employees who are simply looking for ‘a job’ will become overwhelmed when it is not viewed as a vocation. Furthermore high staff turnover impacts on the level of care that can be provided.
  3. Establish whether dementia patients are cared for in a separate part of the facility, as those that simply need geriatric care and are of healthy mind find it almost impossible to deal with the reality of living with advanced dementia patients. Mixing both in the same living space is tantamount to disaster.

We asked Val about the dilemma of whether to accommodate the elderly dementia sufferer in a facility or keep them at home.

“In most of our admissions, we have been surprised at the poor condition of the resident. Most having been on their own and unable to follow daily routines such as hygiene, preparing meals, changing clothes and, many times, looking after pets; not seeing many people, not having conversations or stimulation. We are all fearful of change.

On admission to a facility it may take three to four days to become familiar with the new routine. The shedding of responsibility of living and caring for oneself in every way can be transforming. Taking away responsibility of the new technology such as banking, computer etc. can be such a relief. 

Company of other residents, sitting on the veranda, in the garden or lounge or sitting together at mealtimes is extremely uplifting and makes a huge difference to the outlook on life. All the necessary care, from feeding of meals to changing diapers, is taken care of.  When family or friends visit, they spend quality time together.”

Said by an elderly lady who moved into The Vales?
“Thank you so much for moving me”.
“Why” I asked.
“I don’t have to try to keep up any more, I can just be me”.

Remember, when looking for a place for your loved one, it is for their need, not yours.

In closing we asked Val if there was any other recommendation she had for families at the onset of dementia in a loved one.

“Compile an ‘Angel List’ for your loved one. Access the relevant information at the onset of dementia; in advanced stages it will be too late and application for curatorship lengthy and arduous.”

Some of our suggestions for the Angel List includes:
Doctors’ names and medication script;
ID and driver’s licence;
Bank account numbers, bank cards and PIN codes;
Pension fund details and/or SASSA card and pin;
Cell, PINs and passwords;
Monthly accounts;
Last will and testament;
Insurance policies and/or funeral cover.

Sr. Val Ball (trained at Greys Hospital, Pietermaritzburg back in the day) has spent most of her professional life caring for the elderly, mostly managing retirement villages. Ruth Manson-Bishop joined Val in 2011 after 10 years caring in the UK and, together with all the staff, have made The Vales into a well-run, compassionate home for assisted living and frail care specifically for Alzheimer’s and dementia. http://vales.co.za

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