“So what exactly is wrong with your mother?”
This is a question I kept hearing for seven years. Initially, I would reply, “She has let herself go after my father’s death” or that “she is depressed.” My responses have kept changing over time, as I learnt, unlearnt and relearnt about my mother’s condition, because what she was going through was much more than just melancholy or depression. The shock of my father’s death had triggered the progressive disease called dementia.
My mother showed no symptoms earlier in her life that could have indicated she could be prone to dementia. All I remember is that in her forties, she developed insomnia and began relying on sleeping pills. She often forgot where she had left the keys. There would also be bouts of paranoia wherein she felt she was being watched by someone or that someone was trying to harm her. My family and I shrugged them off, thinking she was overly cautious. Throughout this time, Ammi remained functional, meticulously managing her home, family and relationships.
Her dementia began progressing after an emotional trauma at a later stage in life, in her case the loss of a spouse and so, the deterioration began. Within months, she seemed to have aged by a decade. She was at a loss for words — literally. Having lost one parent already, we — my siblings and I, all adults — felt a double loss. We kept calling on psychiatrists and urging Ammi to stay strong. But today, we understand that she was never weak — she was just not well.
Since then, her dementia has drastically progressed. While all the medical information one might require is available on the internet, personal details on how you can deal with dementia are sparse. It is amongst the most common ailments of old age but unfortunately goes undiagnosed and misunderstood in our society. While, I know some of my family members will disapprove of me writing about this private family ordeal, someone must speak out to create awareness regarding this debilitating condition. With this, I hope to offer support to patients, family members and caregivers who share what my precious mother and family went through and are going through on a daily basis. Since knowing Ammi, she would have wanted me to share anything that could help others.
“You say she has dementia but remembers your name?”
How does one explain to an unassuming friend or relative what exactly dementia is. Most people don’t take it seriously unless you call it Alzheimer’s disease. We have all heard about Alzheimer’s so I suppose it rings a bell but in reality, the two conditions are very different. According to the National Institute on Ageing (NIA) USA, dementia is a mental disorder that affects communication and physical performance adversely while Alzheimer’s specifically hampers the parts of the brain responsible for memory, language and thought control.
Memory loss is, nonetheless, one of the main aspects of dementia. It isn’t just the names and faces of people that a patient forgets. For instance, one of the key tests our geriatric specialist (an old age specialist, in layman terms) ran on Ammi involved asking if she remembered which day it was and if she could tell the time on the clock. When she couldn’t, her dementia was confirmed. With one’s thinking affected, basic functions start getting compromised, specially language, vocabulary and communication. A patient knows what an object such as a spoon or a glass is for and uses it as well but has forgotten what it is called. He or she knows if she has a headache but has forgotten to call it a headache. They know what they feel like eating but forget the name of the fruit, vegetable or dish.
But what is truly amazing is that in most cases, the patient’s consciousness does not alter until the very last stages. Even if Ammi struggles with my name, she knows who I am. Social skills remain intact until the advanced stages so even if they don’t recognise visitors, patients generally make normal, pleasant and general conversation. However, they do realise something is not quite right with their memory and try to cover it up with generic responses. Often when someone asks Ammi if she recognises them, she smiles and says “How could I not?” She has forgotten their name but is aware that it is someone she knows and that it would be rude to admit she didn’t recognise them.
In a strange way, it is comforting to know that your loved one still feels the important things in life: a connection with other humans and the Almighty. The ability to laugh, cry and experience pain and joy are blessings that stay with the patient until the dementia progresses beyond limits.
“I have forgotten how to walk!”
In the advanced stages of dementia, things start getting serious with various symptoms (sometimes irreversible) manifesting themselves. For instance, one morning Ammi stood up and wouldn’t walk forward. “I don’t know how to walk,” she kept repeating while we urged her to take a step, eventually giving up and letting her return to bed. Ironically, the next morning, she was walking again, with support as per normal. The doctors attributed this to a “mini stroke” which admittedly frightened us but we were assured that such episodes are common during old age. Over time, we learned to watch out for sudden changes in Ammi’s personality, behaviour or body language for possible signs of mini strokes and to deal with them accordingly.
A patient suffering from dementia often forgets how to chew and swallow. They can no longer gulp down food and water as normally as they used to. The result can be not eating enough, which may lead to wastage and eventually starvation if nutrition is not given to the body by alternate means. Another complication of this is Aspiration Pneumonia, which happens when food particles enter the lower airways, causing repeated bacterial infection. The patient can also lose bladder control and forget how to exercise basic functions like passing stool or urine, which we take for granted. The result is urinary tract infection, among many other, related problems.
The caretakers, in this process, learn new concepts, and their vocabulary increases. Words like dignity sheets, silicon catheters, zinc oxide and peg tube are new to us. Before my mother went through this, I did not know who a geriatric doctor was. A more difficult word we learnt is "Palliative care" which is specialised care for serious patients with ongoing illnesses. Some doctors will, when you ask them what it means, say that it means "end of life care". But that is not so in all cases, and many patients successfully come back from the palliative care stage to rehabilitation. In Pakistan's urban centres, certain hospitals have begun home based geriatric and palliative care systems so that the patient can get the best care at home.
“But life goes on.” Or does it?
Life does not go on — at least not for the caretaker of someone with a progressive mental illness. Just recently, I texted a friend who has experienced a similar situation with a loved one and although we hadn’t spoken in months, she immediately understood how I felt. I told her that I was breaking and she said, “It does things to you. It alters you in strange ways.”
Truer words have never been spoken. The helplessness of a parent — someone whom you have grown looking up to — is perhaps one of the worst heartaches in the world. Not only must you watch them suffer but the child inside of you dies bit by bit, no matter how old you are. Accepting that the person who raised you is no longer functional or needs an attendant or a nurse for the most menial of tasks is extremely difficult. Accepting that someone who loved food will never again eat by mouth due to the risk of aspirating and must be fed via a feeding peg in the abdomen is tough. Accepting that they will be bed-bound and catheterised for their remaining days takes a toll on you too. In the midst of managing nursing staff, memorising sheets of medication and managing doctor appointments, one forgets that life was ever normal.
There is also that unsaid fear when a voice in the head whispers: What if you inherit your mother's condition? Over time, you learn to not dwell on the thought, pray to God that that does not happen, and move on.
It took me a while to accept that in so many ways, my mother is exactly like an infant. We make her do exercises and play games with her that will improve her motor skills. We sing her nursery rhymes and songs that she enjoys. Her eyes light up when she sees us. Her needs, now, are very basic, just like a child’s. But through it all, she still is our Ammi.
A few silver linings and things to do
Here is what you can do to help yourselves and your loved ones through their illnesses:
• Balance and manage your work and families well and take care of yourself physically and spiritually, otherwise you end up being of no use to your loved one.
• Breaks are a must, as is taking turns if there is more than one caretaker. It is at times like these that one thanks God profusely for the family values that help us stick together.
• Try to spread awareness about dementia and similar disorders among your social orbit. There is still a general lack of knowledge and social attitudes need improving. For starters, tell visitors, politely, that they cannot discuss the patient’s condition in front of them.
• Choose good doctors who can be reached at any time. Have numbers and contacts of nursing staff ready. Emergency medicines and numbers of ambulances are a must.
• Try and develop an inclusive culture when it comes to older people in society. They need not be isolated and confined to their room.
• Spend as much time with them as possible. Company, care and encouragement can result in surprising improvement.
• Learn to retain the good counsel and support you get from understanding friends and relatives. Ignore patronising attitudes and unsolicited advice. Each patient is different and each family’s situation varies.
• It helps to stay positive in such a situation and remember the good times. Keep telling yourself that your loved one has, for the most part, led a full life and that their present state doesn’t define who they are or were. Faith and prayer helps you stay strong.
• Talk to others who have been through the same. You will realise that many other people have gone through this and you are not alone.
• Cherish this time. It will pass, as will the exhaustion. Enjoy the physical warmth, love and the prayers of your parent.
• Most importantly, do not give up on someone just because they are old. Even if you cannot cure the disease, there is so much you can do to make them feel comfortable and feel loved.
Dementia is caused when the brain cells fail to communicate with each other. Damaging of nerve cells that may occur in several areas of the brain is why dementia affects people differently, depending on the area that is affected. However, even though the symptoms may vary, some of the common ones include:
- Memory loss
- Difficulty communicating or finding words
- Difficulty with complex tasks
- Difficulty with planning and organising
- Difficulty with coordination and motor functions
- Problems of disorientation
- Personality changes
- Inability to reason behaviour
- Inappropriate behaviour
Published in The Express Tribune, Ms T, May 17th, 2015.