Living with Dementia
Dementia is a condition that not only affects a person but also has a profound effect on the family. It is a progressive condition with changes in the person and his personality seen over time and at every stage, the family also needs to make amends to cope.
Family and friends have a huge impact on the quality of life of patients with dementia. They not only care for the patients physically, but also keep the patients inclusive in their daily lives. The caretakers need a lot of attention and acknowledgement for their services.
September 21st is World Alzheimer’s Day, observed all around the world.
This month, we wanted to appreciate the role of caregivers in looking after patients with dementia. We invited a few of them to give an account of how life is, taking care of family members with dementia. These personal write ups, open the window to their lives and makes us celebrate their role in the care of dementia.
We doctors, salute all you care takers, for your service.
Dr. Bhuvaneshwari Rajendran
Senior Consultant, Neurology and Neurophysiology
Kauvery Hospital Chennai
Sometimes I am her daughter
Sometimes I am her daughter. Sometimes her sister. Other times, her mother, a relative and so it goes on! Sometimes its Bangalore, other times its Chennai. Sometimes its her childhood home and at other times it’s the college where she worked for 35 years, or more rarely the home she now lives in. Sometimes she is young and in school. Other times she is working as a professor of English!
That is the confusion from dementia! And as a caretaker you enter their world! And not ever try to present reality or correct them. My prior efforts at trying to rationally correct her about where she was, or who I was ended in frustration and anxiety for both of us.
Its hard when a parent who took care of you and your kid is now helpless like a child and needs your care. It’s a roller coaster ride and you learn to make the best of the good times.
I kindle the old memories of her childhood that still remain embedded, and never tire of listening to the pranks she and her siblings got up to! She sometimes talks about the busy day she had in college and I listen with interest knowing she hasn’t left the house! There are times she says ‘this is all very confusing’ or ‘something is wrong, I am going crazy’ and my heart breaks. I just hug her and say ‘Don’t worry, I am here and will take care of you’! That seems to reassure her. Other times she insists on ‘going home’ and I take her for a walk or a drive in the car and hope she forgets!
The movie that opened my eyes to what dementia is like was ‘The Father’ and I strongly recommend anyone looking after or living with a dementia patient watch this.
Nirupa Fernandez
1st Place
Living with Dementia
Thud! We could hear the loud sound even from outside. I listened as my Periyamma hurried over to the door. I heard my ama’s anxious cries and | saw my grandfather lying down on the floor. Clutching his head grimacing in pain.
A single fall can become fatal | learned this over the years. For my Grandfather, not only did this greatly aggravate his dementia but it also caused his balancing problems. My grandfather knew little about what was going on. The caretaker annoyed him. Looking at his perspective, a caretaker was always a nuisance. Because of his dementia he didn’t know that he had balancing problems, or that he couldn’t move around as much as he used to. As a child | didn’t understand the seriousness of the situation to me it was annoying that my mother was busy, annoying that he would argue, annoying he would throw tantrums.
At one point I thought it was funny the way he forgot things. He really was a special person, he would always make me laugh and make me forget all my problems. He would always called me“ Koindai” it was like a special name only reserved for me. When his case got more severe he forgot everyone, but he would always call me “Koindai”.
“Thatha come lie down!”
As I grew older I finally understood the seriousness of the situation. My grandfather used to have what I called “Night time Wanderings”. My grandfather could not tell the difference between day and night. He did not like to sit in one place and was constantly moving about.
Though he received lots of care, my grandfather got very lonely, not many people came and spoke with him.
Looking back I now realise how much dementia patients need company, love and care to improve their condition.
Laksya Arun
2nd Place
Living with Dementia
It was in the year 1971. I was in college. We were staying in Kumbakonam at a rented portion. The house owners were an elderly couple. Every day morning there will be a battle between the two. Paati will shout “Just you drank coffee. How can I give immediately for the second time”. Thatha may be in his eighties will retort “When did you give? Don’t lie “Paati will not remove the empty cup for hours together. In spite of this trouble will erupt often. He will ready his bullock cart and ask money from Paati – Give me cash. I need to disburse to the people who harvested the crop. Paati will bring the calendar and show to him. Now we are in the midst of summer – May – Unable to bear the heat. Harvesting was done long back in January. There is no harvesting now. Go and sleep. Paati will advise. Thatha will never listen whatever she says. He will drive the bullock cart and go to the village. Will return back late in the evening. We youngsters will happily enjoy the happening. We were told it is an old age problem – Gnabaga Maradhi. No one uttered the word dementia at that time.
It was in the year 2016. 10.20 p.m. My mother will start shouting. “Ennai engathula ippave kondu poi vidu “ Brhamin language for “ Drop me immediately at my house” I will start explaining – This is your house. You are living here for more than 20 years. “No way. I want to go now. Drop me immediately or catch an auto. I will go on my own.’ Finally, I will take the car. Will roam around Pondy Bazar for 15 -20 mts and will come back. As soon as I stop, she will get down fast and go into the same house happily. Not one day or two days. This drama went on for countless days.
In 1971 it was fun. In 2016 it was a nightmare. That is life. Now my mother is in the seventh year after onset of dementia. More subdued, not much speech, occasional smile like a child with full of innocence.
M S Chandrasekar
3rd Place
Dementia patients are more sensitive. I handled my father, who was an emotional and the most loving man. His love for anything or anyone is really extremely high in his normal life. When time flew, he became possessive and stressed in every small occasions when something unusual.
He was found himself alone and uncared even the people around him. He started forgetting the day today activities. He started assuming something going wrong around him. He guessed something happened even when it was not happened by that time. Then only through psychiatrist and doctors, he was diagnosed dementia.
More than medications and treatment, dementia patients need hope and care by the doctors and caretakers. Luckily I got those support and I hope I also cared him well. I never felt tired on taking care of goes him as I felt so comfortable with the doctors and the hospital.
My father becomes expected the same charming responses from me even when he say the same sentence for more than needed to look for someone to listen what all he was saying. Dementia caretakers should be ready for giving their own time to listen and response to them charmingly.
Yes, there are tough times for the care takers. Dementia patients will sometimes think of as the worst villain about the care takers. It is the time to feel so strong by ourselves. Even they will leave our house by themselves and not able to return back.
Only hopes will help to find them or handle them.
My father went on sick and one day he left us all, leaving me with all his true love and maturity. Once for all I wish to tell every care takers, do not over think or scared of the activities the patients are doing. Just stay with the flow of life, make yourself light on any situation. Believe on the doctors and the environment around you. Love them and give your time to them.
Ceyloshia Munish
Living with Dementia
This is an outside-in view of what happened with one of my close relatives who suffered from dementia for the last 6 ½ years of his life. The family was devastated by the experience my father-in-law had because of dementia.
We had a full-time caretaker to take care of him because of his balancing problems. My father-in-law believed he could carry his activities normally and it was a nuisance to get help from the caretaker, so there was lot of resistance and reluctance in taking help from the caretaker for any of the regular rituals like going to eat or going to the toilet or having bath. The toughest part was getting him to wash his hands and do the rituals correctly.
The interesting part was though he forgot names of people and forgot what he did he remembered very accurately, incidents which had happened in his childhood, school days. These anecdotes that he recited dwelling into the old memory lane, we shall cherish throughout our lives.
The other amazing aspect about him was his dexterity to do things around the house fixing the valves in the taps, or leaking water tanks, termites in cupboards he was still able to do it.
He would innocently open his palm and ask for food from his granddaughters forgetting that he had just eaten. They would smilingly give him something to eat.
He loved his granddaughters and would make them laugh all the time forgetting his own discomfort.
If we give Love, care and most importantly companionship the condition can be improved and managed.
Arun Venkata Subramanyum
Dear Strangers
Reflecting on the past decade of caregiving I realise that one experiences emotional states similar to mourning. The strong spouse, the loving mother, et al -seem to have been replaced by barely recognisable strangers. Kübler -Ross enumerates five stages of mourning following the loss of a loved one. These are highlighted below.
Once the dread diagnosis comes in there is Denial. Surely this cannot be be happening!- is the thought that haunts us.
Facing up to the ravage wrought by the disease one feels Anger at the life situation one finds oneself in.
Yet hope is not extinct- one sets to Bargaining – with the Gods, different therapies (Not always proven nor even harmless), etc.
Realising that the disease is increasingly debilitating and progressive – one might feel Depressed.
Acceptance of the inevitable occurs eventually. In these days of increased longevity it is not uncommon to meet others in the same predicament. Trying to live in the here and now and keeping the loved one as comfortable as possible seem the only option.
It has been rightly said caring for one with dementia is like bidding a Long Goodbye (even if the caregiver goes first!)
But like everything else it is not an entirely negative experience. One realises how fragile our mind /body complex is and is grateful that as of now one is cognitively alert enough take care of others.
Observing different people I noticed that however altered the person may become, some of the basic character traits do not change. A gentle person may just seem duller, an aggressive person becomes irrationally demanding or paranoid, etc. This serves as a warning that we should consciously cultivate equanimity, kindness and other habits which will sustain us and others if and when (God forbid) we ourselves become helpless or dependent.
Kshama Rangarajan