When a Parent has Dementia

We may anticipate our parents’ later days as a genteel decline through physical frailty towards the parting of a peaceful death, but the reality can be very different: One in three of today’s over 65’s will die with dementia. By 2015, there will be 850,000 people with dementia in the UK as numbers continue to rise.

Dementia is an umbrella term covering various brain disorders that trigger a lost of brain function. The most common type – accounting for 62% of dementia diagnoses – is Alzheimer’s disease. Symptoms include memory loss, confusion, problems with communication and mood change. The conditions are progressive and eventually severe.

Loss of physical capability is hard for a person, but loss of mental capacity takes its toll on their loved ones. It’s often said that babies do not come with an instruction manual; the same applies to elderly parents with dementia. In both cases, those who love and care learn on the job.

The shock of a parents’ dementia diagnosis can trigger a steep learning curve for their offspring. The practicalities of negotiating support systems, finding and funding care tend to take centre stage. A crisis, such as a fall, may involve urgent action to meet a parent’s changing needs. But alongside this, we who care for elderly parents are also going through emotional upheaval and adjustment. We may be

Navigating a changing relationship, as our role shifts into being our parent’s parent, carer and Attorney. Managing their affairs, possessions and even selling their property, can feel intrusive. We did not expect to be going through their private matters during their lifetime.

Grieving our loss, as a parent leaves us, not in one fell swoop, but in one piece of personality at a time, and eventually not even recognising who we are. We grieve in fragments, perhaps unaware of the process until the underground course of silent tears surfaces, or we simply find ourselves overwhelmed with fatigue.

Processing guilt, as we make momentous decisions on our parent’s behalf, and have to face the reality that we can neither ‘fix’ their lives nor be available to care for their every need 24/7. We can also feel guilty, if we find ourselves impatient or angry at their behaviour.

Learning new ways of communicating, as our parent struggles with naming people or things. People with dementia may use incorrect words, or not find any word at all. We learn to listen with imagination, looking for how their words might link to what they are trying to say, tuning into clues of body language and mood.

Becoming Time-travellers, as a parent cannot remember if they’ve had lunch, but recalls every detail of a first day at school. The world of the past, where they had and knew their place, is increasingly real and comforting to those with dementia. Rather than pull them back into the bewildering here-and-now, we learn to go with them. Old family anecdotes that once had us rolling our eyes, become a precious resource as we meet our parents down memory lane.

Living with uncertainty amid the Certainty, as we witness the deterioration wrought by dementia on one we love. We are having to accept the inevitability of the destination, without knowing the pace and timing of the condition’s progress. This can be demanding on our emotional stamina. This season may be relatively brief, or we may be in it for the long haul.

With all of these and more going on, it is vital that children of elderly parents with dementia do not neglect their own care.

We need to make space to grieve; be kind to ourselves when we are less than saintly and accept that we are on a learning curve. We need to take time to rest; not put everything that nourishes us in life on hold, and accept that we may feel more detached in our caring as our parent’s condition progresses.

It can help, too, to have those around us who will listen to us talk, and support us as we find our way through changes in a loved one we would never have chosen, but have to face.

 

For further information and support:
www.alzheimers.org.uk
www.dementiauk.org
caregiver.org/ten-real-life-strategies-dementia-caregiving
www.bacp.co.uk

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