When someone that you care about receives a dementia diagnosis, it’s devastating for everyone concerned. During the years leading up to it, the person that you care for will have begun to withdraw. Personality changes will have taken place and you may have had arguments or disagreements as you struggle to comprehend a marked change in demeanour and outlook in someone you thought you knew well.
When you hear the news, you may reflect sadly on what has occurred or project into a future, which is at best uncertain. In either respect your feelings need to be recognised and then shelved because if you want to really help, you need to make contact with them.
Research shows that the longer you maintain contact with someone you know well who has dementia the longer they “hold on to you”. If you withdraw from them you will lose them more quickly.
If conversation is difficult, or if they are having a difficult day it might be useful to play music which you know they like. Being read to is also enjoyable to many with dementia. When Mum eventually moved into a nursing home and had passed into a silent state, it was good for me to visit her at mealtimes when I could feed her.
Visits to people in their own homes provide opportunities to demonstrate to spouses or children that their loved one is still valued.
The important thing to remember is that these visits are about quality and frequency, rather than length.
If you find this too difficult then offers of help in other ways are still vital. Practical things like collecting prescriptions, or shopping for food, offering to help with household chores, or driving the person with dementia and their caregiver to appointments are all small gestures which can make a huge difference.
Even a weekly phone call to check on the caregiver and the condition of your friend will help. Isolation is routine when someone has dementia and as caring responsibilities grow, so sometimes does an inability to ask for help, eventually bringing on caregiver burnout
If you’re visiting someone in a nursing home, suggest taking them out, even if it’s just for a walk. Mum’s nursing home was on a village green which had a pub with a nice garden. It was a tiny slice of normal life that can be missing in institutional settings.
You may find it extraordinarily difficult to maintain contact with someone whose memory is failing but it is far worse for them, so visiting regularly is vital. This demonstrates to the person affected and their loved ones that “love does not alter when it alteration finds”.
Patience is an imperative
Mum chose to go to see the film Iris. We went together with a friend of mine who was dying from terminal cancer, and she noted afterwards that she wouldn’t necessarily have been up to watching a film detailing her condition. Mum was adamant, though, so of course I took her and although I discreetly wept throughout the film, Mum stoically took it all on board.
As caregivers and as advocates, our own feelings need to be put last and the wishes of the person we love must come first. This must become a mantra, and it is one I adopted in every aspect of my approach to Mum’s care.
There is what I call a “caring voice,” for example, that some of Mum’s visitors were very fond of using.
Speaking at above normal volume and with a sing song tone they would shout, “And how are we today Elizabeth?” Mum would politely reply in an entirely normal tone — that didn’t belie her irritation — whilst giving me a fleeting sideways glance.
Even in the end stage when her speech was lost and her eyes were usually looking off into the distance, she once met my eye and rolled hers skyward when a new care worker bustled about Mum’s room deploying that hated tone.
As the person we love loses more skills, we must hone our levels of patience to a degree that has never been expected before. It’s very frightening to look down and see you are strapped into the seat of a car and have no notion of how to free yourself; it’s then so much worse to hear a frustrated voice telling you that you are being deliberately difficult in not undoing it.
I see it as the equivalent of yelling “RELAX!” at someone who is clearly tense and expecting that this will produce positive results.
Patience, when it comes to dementia, is not a virtue — it is an imperative. We’re all busy people, all imbued with a threshold of irritation which pressure and worry and tiredness can rapidly deplete.
I promise you, when you reflect after your work as a caregiver is over, it will be the times when you snapped in frustration which will make you the most regretful. Of course I occasionally felt frustration and snapped a short, terse response at Mum’s inability to do something.
I can’t remember what those things were but the confused look of distress in her beautiful blue eyes is etched into my memory permanently.
To discover that the person you love — whether parent, sibling, spouse or child — has dementia will be one of the defining moments of your life. Nothing you will have experienced thus far will have prepared you for this diagnosis, and nothing will test your love more than dealing with the mental and physical work that lies ahead.
As your loved one drifts into the darkness of memory loss, you need to ask yourself a question to determine how you will respond: “Is my relationship determined by reciprocation?”
I asked myself this and it served as a useful mantra during some very challenging times.
Reciprocation in terms of dementia begins to drift for years before diagnosis arrives. You may have felt hurt or wounded by sharp words from an otherwise gentle person, or seen anger at seemingly trivial events. You will have felt unfairly blamed and unjustly put at a distance. You may have withdrawn feeling hurt at the change in someone you thought you knew so well.
The diagnosis will help you to understand that above all, these words and actions were prompted by fear.
Memory loss is so much more than forgetting events, or names, or faces. It is losing the foundation on which we build our lives and frames our personality.
Our experiences shape and mould our views and our opinions. It gives us the signposts for social situations, relationships, and the routine activities of the day. Memory also keeps us safe.
When the diagnosis of dementia arrives, you must learn to forget. Those slights and wounds rendered by someone in pain are not a true and accurate reflection of how much they love and value you.
Your relationship has changed and you have to realistically assess what you are capable of giving. There is no pre-requisite that you must be the primary caregiver, irrespective of what societal expectations are. No politician, church leader, doctor, social worker, relative or neighbour can dictate to you how you must proceed.
As a primary caregiver of 22 years I know above all that this role is challenging enough when freely chosen, let alone when undertaken with any doubts.
Organising, planning and decision-making
It can be daunting to look to the end of the process, but when it comes to dementia the end very much at the forefront of our minds.
Mum was very pragmatic. As a former nurse and health visitor responsible for elderly people and newborn babies, she had visited many elderly people in her career. She understood what a diagnosis of dementia meant in real terms and what it meant to the families and caregivers of those who loved them. Mum’s diagnosis came about as many do, via a different health concern entirely.
After undergoing what we thought was a heart attack, she was hospitalised in a cardiac ward. As she was an inpatient, it was more difficult for her to cover up or compensate for her condition and its tell tale signs.
Once the staff discovered her night waking and general confusion at being in a different environment, Mum was moved to a geriatric ward. It was here that a neurologist ran a series of tests and identified her condition.
Post diagnosis, Mum was clear that she wanted to place a DNR (Do Not Resucitate) into her will. In doing so she offered to her family the most heroic measure as a gift: the instruction that we were to let her go.
She knew what dementia is, she knew what it meant and she documented her wish in order to release us. When she endured the stroke which would kill her ten years later, I failed to think clearly.
She had declined in stages — some big, some small, but always moving her towards silence and the darkness. Yet when the call came that she had had a stroke, I panicked and insisted that an ambulance be called to the nursing home.
The paramedic gently explained her wishes as if I didn’t know them. Mum was right — she knew I’d need her help.
Take all the advice you can. Make plans, have a structure built around every decision and every stage of the disease and remember to include the wishes of the person you’re representing. I don’t suggest you demand answers, but allow any naturally occurring conversations to occur even if you feel distressed or don’t want to discuss it. You must be guided by the person you love, who may have huge concerns about settling their affairs whilst they are still able to do so. Conversely, raising the conversation and suggesting getting affairs in order, may be met well or badly, so exercise caution.
One woman I knew found after her Mum’s death that her plans were immaculately detailed, even down to every aspect of her funeral. It’s a gift of love she gave to her children.
As dementia moves on in its unstoppable way, the lack of mental capacity means making plans on the patient’s behalf more difficult. Knowing that you are acting in the best interests of your loved one now offsets the time when your grief is in free fall.
Plans made in better times respect their choice, their life and best reflect the manner of their leaving it.