Finding a meaning in “CAREGIVING”

This article is aimed at throwing light on “Dementia”, which is a word for a group of symptoms caused by disorders that affect the brain. It is not a specific disease but not many are aware of this. Poornima Bisineer, a doctor turned medical teacher and a reader of this blog writes this guest article to share her personal experience to empower and bring in more positiveness in caregiver’s thoughts.

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I can describe my husband Dr. Raju MP as slim, smart, well-dressed, smiling, reserved and a nice person. I am going to narrate the events leading to Raju being diagnosed with Pick’s Disease, a pre-senile dementia and how it changed my life. After 8 years of marriage and having two children I thought I knew my husband very well. But more often than not, there were instances where I could not understand his behavior. The first abnormal thing I noticed was in the middle of 1999, that he was lying down most of the time. He complained he was not feeling all right, he feels tired always. Then he started neglecting his practice and his work in the hospital. He lacked interest in any thing at all. Going out for dinner with his friends, having drinks and informing me in the last minute became more frequent.  He became more and more indifferent to my needs and problems.

One day in October 99, I fell down from scooter, came home bleeding with many cuts and lacerations. His only reaction was ‘wash the wounds and take some analgesics’ and he pulled the blanket over his face and went back to his sleep! I felt he was being rude and uncaring. In the beginning of 2001, I noticed he was forgetting the roads to familiar destinations. By the end of 2001 he was watching TV compulsively, taking ‘anxit’ regularly as he was not getting sleep; also the obsessive compulsive traits had started. He was also talking to strangers, repeating sentences, reading all the boards on road, driving recklessly and totally neglecting work. By now I knew something was terribly wrong. Yet our relatives and friends could not understand my anguish. One needs to stay for atleast a day with him to make out he is not all right.

Raju was not ready to see a doctor. He believed he is normal. I tried to make him understand how he has changed from last few months. When I could not convince him with all the reasoning, I was almost shouting at him. I even told him that he cannot take me for granted; if he does not come out of his recluse I will just walk away. He was not angry, did not shout back, he just told ‘don’t leave me, I will listen to you, if you leave I will follow you! After two to three weeks, I realized he does not understand. Finally I had to blackmail him to take him to a psychiatrist. The psychiatrist diagnosed his problem as ‘depression’. When I was not convinced he said anxiety,confusion and memory problems can be symptoms of depression. Raju was put on citalopram. After two months of treatment, with maximum dose, when there was no improvement, I took him to another psychiatrist, who diagnosed his problem as obsessive compulsive disorder and put him on fluoxetine.

When I told my brother-in-law who had accompanied us that Raju does not remember many things, he started asking questions to him and I was shocked when Raju could not remember our anniversary date and our daughter’s age. Then we decided, a brain scan has to be done. When I finally got MRI scanning done, the report said some parts of his brain are atrophied. I was terrified. Dementia was still the farthest thing from my mind. Raju was so young. No one in his family ever had it and he was still doing surgeries – a far cry from the idea I had about the disease. I couldn’t think he is really ill. On the contrary, he was the picture of health – most of the time he was cheerful and also had gained weight. So I took him to NIMHANS and Dr.Ratnavalli after ruling out all the treatable causes of dementia diagnosed Raju’s case as “Pick’s Disease”. It was in August 2002. The diagnosis was devastating. Worst thing I suspected was schizophrenia, even a brain tumor or a stroke was better than this diagnoses. I had never felt so frightened in all my life. I imagined Raju’s brain shrunken and dying. I wished I could give him half of my brain! I was angry with him for much of the year before diagnoses and it made me less sympathetic with Raju’s growing plight and it made him more anxious and ashamed. After I came to know the diagnosis all my anger vanished and I could only feel compassion for him. But they are telling half of my husband’s brain has degenerated, the remaining is going to die and there is nothing we can do about it! It was as if the whole world was collapsing around me.

Seeing my husband who was a competent surgeon and a compassionate doctor in this pathetic condition is not easy. Caring for a loved one with dementia requires courage. In my experience as a caregiver the worst thing about this disease is, you are alone throughout. He is in a different world. I cannot understand what he is going through… He does not have a clue what I am going through… No way to contact him. Finally I have come to a stage where I have accepted his disease, I have accepted no appreciation, for all the struggle I am through, I have accepted this punishment of watching him fade away & accept being a wife I cannot even comfort him, when I am ready to do anything for him.. I only pray to GOD “Please God let him have some peace, I cannot bear to see him like this, so restless, confused, depressed”. I have realized my only salvation is to take care of him to the best of my ability.

Being a widow appears easy in front of what I am going through. Death appears simple compared to what a caregiver is asked to bear…You find no meaning for his existence – but you cannot kill him. You cannot live your life; your life is robbed out of your world, your ambitions, interests, your hobbies washed away… You are asked to do the impossible care, care, care – 24 hrs, 7 days, 365days, no recognition by the patient, and no sympathy from the society, no insurance policy recognizes ‘death’ when it is worse than death. You are stranded… no improvement, just getting worse in spite of all your efforts. In case of death you grieve for 6 months? 1year? 2years? Then at least you can take care of your life, concentrate on career and bring up the children in the best possible way… It’s not to be so easy… that’s my destiny. Sometimes I feel a stone is tied to my neck and asked to swim…I tried to solve this knotted problem thread by thread…In the process I did everything possible, everything others assured would help… vastu, fenshui, homa, temples, churches, dargas, alternate therapies… being a doctor I did all this. I even imported drug – ‘memantine’ from Europe and imported Chinese medicine… In the end I felt duped, wasted a lot of money and time. I realized I couldn’t go on doing these kinds of things. If God didn’t want me to go through this, he would not have let it happen in the first place… It’s better to accept and concentrate on care, using the resources for better care, using the time to care for my husband and children and for doing justice for the pay I get because that is what gives me my livelihood… In the course of my struggle there were some good things happening.

I found so many people exist in this world, who are ready to help you, though they might not know you, seen you… For instance when I imported the drug memantine it was held in the customs and I was asked to pay exorbitant tax but through the help many people (like the customs officer, clearing agent, government doctor who certified it was a life saving drug, taking the risk ) in the end I got it without any tax! This experience made me realize ‘there is hope’, not everything is lost… And people of ARDSI and of my support group spread across the globe – they are my friends, they are there for me, they vouch their understanding, pray for me, give me even cyber hugs. There are many people around you who are good; you get help from unexpected quarters. Then I felt there is a role I need to perform… it’s better to come out do something, which can help others, which can give meaning to my life… So I found a way, to continue…not to just live but live a beautiful life, a meaningful life.

Look at it this way, here is my husband who does not lie, is truthful, who does not hide, who is open, tells whatever comes to his mind, who is not unfaithful, who needs me, who does not hesitate to tell me that I am beautiful, and that he loves me, who trusts me that I am capable of taking care of my children, who smiles when I hug him… There are so many so-called normal husbands who abuse their wives. How can I get angry with him? I can only feel compassion. Though I felt I have lost communication with him, still there were instances where I could see the glimpses of his old self even now… Some kind of contact, a word, a gesture, an expression… Instances like when I had taken him for a ride in the car… I had given him some orange so that he is not restless…. was thinking what all the things I need to do on that Sunday… all of a sudden I find him offering a piece of orange…I was so touched. Still he is with me… Another instance when we had gone for a walk, had only one umbrella and it started raining. He opened it and I asked would he let me get wet? He smiled, put his arm around me and took me under the umbrella. Or another instance when I had taken him for walk in the beach, he was trying to catch the little crabs, I was trying to bring him back to the path… and all of a sudden he stopped and started writing something in the sand…Dear poonu, I LOVE YOU, Raju….I felt so happy as I realized he is still trying to communicate with me. It is instances like this, which makes sense in this senseless world and made the entire struggle worthwhile.

How did I cope? I stopped feeling sorry for myself; I decided to face the situation head front. Found a good doctor to manage my husband, changed the job to increase my income, handled the finance and took care of my children’s emotions. My hobby of reading books helped me – I read English classics, even enrolled myself in open university for kannada MA, read ‘Kumaravyasa Bharatha’ which took me into a different world where I forgot my suffering though temporarily… Even reading Ramaraksha stotra, Lalithasahasranama helped! And of course praying or just the act of doing pooja calmed my mind. Talked to friends whenever depressed. Came out, tried to do something which gave meaning to my life like help others who are more unfortunate than me, tried to make someone’s suffering less. I counted my blessings. At least I had two beautiful children, supportive family, a good doctor like Dr. Sharma and a good job, which made expenses manageable.

What did I learn? I have changed, changed for better.I stopped questioning ‘why me?’ I accepted it. I learnt to concentrate on solving the problem at hand than worrying about the future. I have become a stronger person – I never knew there was so much strength in me! I have become a better person in that now I don’t fight with people, I find nothing is as important as to fight over and loose your peace. Now I don’t get angry with people even when they are unreasonable. Instead I feel sorry for them because I know they are struggling inside. My perception has changed, I am no more bound by conventions, I don’t hesitate to do anything that can help me taking care of my husband and children better irrespective of what others think. I have become bolder; I dare to do things now, which I never would have done before. I have become more patient. I don’t get ‘shocked’ by death anymore – after all I am seeing it everyday! But I have become more sensitive to others suffering. I am not scared to face adversity, have become strong enough to console those who are suffering. I don’t even need 7 hrs sleep, I can manage very well with 5hrs! Maybe there is a purpose behind all this, there is hope at the end of the tunnel, for “I am the chosen one”. Care giving is a long and arduous road. However, it is also a gift and a blessing. It is an honor to be trusted with someone else’s care.

My suggestions to Caregivers – You need a lot of courage. You need a lot of patience. You need a lot of help – don’t hesitate to ask for it. You are asked to bear this burden, bear it with dignity, with love, with courage. Don’t ever feel guilty – it’s not your fault nor the patient’s fault, you need not feel embarrassed. About the social stigma – you can never make some people understand, no use in wasting your time and energy- ending up with frustration and anger. Learn to be patient with the ignorant. It takes time for awareness. Please recognize it is not ‘he’, it is the disease, which is evil, which makes him violent or abusive. Learn to separate the two. This will help in not loosing temper and to be more compassionate with the patient. Don’t be scared, the worst is over. Remember everything passes… take one day at a time.

Don’t be vulnerable; beware of people who try to take advantage of your situation. Consult a lawyer – take legal guardianship or power of attorney or a will if the patient is still capable of doing the signature. Read books like ‘Alzheimer’s journey, 36 hours, Losing Lou Ann etc. etc. – learn more, know what is happening. Manage the finances; get the gratuity, pension, disability benefit from LIC if you have a policy or from provident fund if the patient was a member. Claim the income tax benefit of the clause – 80DDB – 40,000 reduction at source. At least some money to take care of the patient with some dignity he deserves! You cannot always provide ideal caring you want to give to your loved one… know your limitations, don’t be hard on yourself, do your best, strive to do better. Know that you are not alone, meet a support group, form one if you don’t have, become a member of support group in the internet. (This from what I got from another caregiver)

And lastly a special word who have taken the final steps with their loved ones and know the burden of eternal farewell. My heartfelt wishes for your recovery, above all my wish that you receive the special wisdom and peace of mind that is unique to those who have taken the long journey of care giving. You are an unique person with a unique experience. treasure it, share it, and reflect on it from time to time and it will pay rich dividents for the reminder of your life. go with thanks!