Me & Dad

Me & Dad

A bit of background:
My father is 8O-years old and has advanced chronic kidney disease or CKD. His kidney problem started off quietly enough more than a decade ago, with an episode of suddenly spiking blood pressure [BP], which left one kidney ‘scarred’ or damaged enough to nearly nullify its efficacy. Nevertheless being of a robust constitution, he managed quite ‘normally’ for more than 1O years on the other kidney, replacing salt in food with LoNa the low sodium salt substitute. Since he felt quite alright and was able to undertake his normal routine without a problem, he also stopped visits to his kidney specialist! Meanwhile, my mother’s cancer reappeared aggressively and the family focus shifted to the health crisis at hand. She passed away peacefully in 2OO6.

Dad stayed ‘normal’ until 2OO9 November when he visited Pune to escape Delhi’s winter. His situation suddenly worsened within a month and he began showing symptoms such as slurring speech, dragging the right leg while walking, showing confusion when he had to turn while walking etc., as well as increasing loss of bladder and bowel control.

Dad and I were in and out of hospital from January till April 2O1O, when the doctors finally put an external catheter with drainage bag for him, called a suprapubic catheter. This helped him enormously. His formerly perennially bloated stomach reduced, his appetite improved and he became more alert etc.

Since May 2O1O, the effort has been to keep the most important parameters for CKD, the uric acid/urea and creatinine levels under control.

Along with medicines I have learnt that diet plays a key role in managing CKD. When certain electrolyte levels are above limit, I ‘leach’ his food. Leaching is a process where you boil whatever you are cooking once, then rinse the once-boiled vegetables/dhal etc. in fresh water and then re-boil them before seasoning and serving. Salt intake also has to be managed and certain fruits, vegetables and protein sources are either banned or used sparingly/with dilution.

Caregiving issues that I face/d
Father’s CKD entered my life in the form of a crisis. From December 2OO9 till May 2O1O, I went weeks upon weeks without a full night’s sleep, but would still have to get up early to do the household chores, look after him and tackle my work assignments since I run the house. I did not know what crisis each day would bring with regard to his condition, and this was a very mentally taxing period, when I was tired, anxious, and fairly short-tempered often. In reflection, I learnt a lot, developed new capacities, but it was very tiring. Everything was continuously serious and only responsibility-related – no fun, nothing lighthearted; as the sole caregiver, father’s morale and physical well-being was, and remains, my responsibility.

Time issues
My time to myself also drastically reduced, since my father would initially need something or the other every two to three hours, so I had to plan my days around that. There were days I stepped out for an hour only to find my father on the floor, when he had slipped from his sofa chair. Luckily, the chair is low and he was not hurt but I had to round up male help to lift him up, since I could not do so on my own. I decided to henceforth only leave the house during his afternoon siesta.

Prior to dad’s crisis I had a very busy life spending a fair amount of time outside home in various group activities, but since his illness, I have had to deal with isolation. My father speaks very little by nature and only spends his time reading or watching TV. There are days when I truly felt I was in a prison. I would chat with friends, but now our lives and routines had so little in common that at least two friendships fell by the wayside, adding needless dismay and stress. That taught me to take charge as much as is possible of my own emotional and psychological needs. I increased my indoor activities and hobbies and also developed a new hobby: collecting DVDs and watching them on my laptop.

To date there is an underlying theme of fear and stress running through each day, because Dad is 80 and there has to be a final health crisis: when and how, are both unknown.

Diet issues
Though diet restrictions are a part and parcel of advanced CKD, my father is very fond of spicy, interesting meals and juggling that with his dietary restrictions is an art that I am yet to master. He has an egg-cup that sits on his table, filled with salt which he liberally sprinkles on his meals periodically though this can cause him very serious problems. Thankfully he has parted with his achar bottle. He looks exceedingly sad when these things are confiscated, and I used to feel utterly rotten; now I just say ‘tough and too bad’ and confiscate it anyway.

I accept that as an adult, my father must take responsibility for his own actions. Policing him is a big drain on me and I will not do it. He is a chewing-tobacco [zarda, tambacu] addict and has not given that up, despite it being one of the causative factors of this condition and one that causes further deterioration. If I don’t get it for him, he tells a relative who lives nearby who happily does so. There is no point to certain battles I have realized.

Certain relatives also feel I ‘control’ father needlessly and feel obliged to come by with ‘tasty’ home-made food frequently such as chana bhatura, salsa and nachos, pickles etc. none of which is really recommended for a patient with advanced CKD. Each time I hold my temper and politely speak about father’s restrictions [I have even told them to speak to the doctor directly], but they don’t get it. As a last resort I end up calling my father’s eldest brother who has unstintingly provided guidance and moral support, and he has a word with them. But within a month or two it is back to the same old nonsense.

Father’s menu is planned to include treats such as sambar/ rasam/ kadhi-pakodi/fritters etc. etc. once a fortnight as per the dietician and then only if the blood reports are somewhat normal. When these foody-gifts are brought and placed directly on my father’s table, he gets tempted and they mess up what his body can handle. He soils himself, his clothes and his surroundings because his bowel control is poor. Why are we disturbing a physical system that is already under so much stress? Further, it leads to an elderly man feeling low when he soils himself, and this can be avoided. Not to mention me who has to clean it all up.

He has lived a wonderful, full life and a little bit of discipline makes life easy on him and on me. Why tempt a person who is already facing so many restrictions? He can barely walk today with a walker. Any extra salt intake and foods such as chole, lobhia, rajma etc. will hike his urea/creatinine [presently already at 65/3] and increase wastage of muscle mass. None of these factors seem to bother these relatives. I used to be on very good terms with them once, but now deal as little as possible with them.

When visiting a patient with any advanced disease it is wise to ask the caregiver what can be brought/given. Really the best thing to give is your company and that too after calling to ask what time [and visit duration] suits the patient. But do we do this in India? Not really.

S.

6 comments

  1. Shashie says:

    Hi, Ramana
    Sorry for the delayed reply! Going out leaving the patient alone is a major thing alright. I twice found dad on the floor when I returned, after that I go out only and only between 3.3O -5.pm only if i HAVE to, because that’s the time he sleeps. Adverse incidents, of this nature, have also gone down since he began using a walker. Bless the inventor.

  2. Prabha says:

    Hello S,
    Thanks for sharing your experiences – I can relate to your situation as I briefly cared for my mother with a similar health condition before she passed away. That was over 13 years ago and though I had wonderfully supportive friends to see me through the brief but extremely fraught period, it took me several years to get over the regret of not being able to be the caregiver she needed and deserved. I wouldn’t underestimate the power of guilt and regret in colouring one’s life and choices for the rest of one’s life unless one does something about it!
    Your compassion and patience for your dad and his condition comes through so clearly. And it’s not easy to have to constantly plan menus and control another person’s food intake while also looking after their other needs. It would be so easy to get angry and frustrated at your dad for not complying with doctor’s orders especially when it leads to adverse health consequences but you are looking at things from his perspective as well (as you say, he has lived a full life and wants to continue to enjoy the good things even if they are not ‘good’ for him).
    Other family members think they are being kind to the ‘patient’ but don’t realise how they are making things worse. And it makes the primary caregiver look like the ‘bad guy’ for protesting!
    All I can say (based on my experience) is that you will have plenty of time later to mend relationships with others if you wish but now your focus needs to be you and your dad. This may sound presumptuous, but I will say it anyway – DO FIND THE TIME TO TAKE CARE OF YOUR EMOTIONAL HEALTH TOO (if you are not doing so already) for your own sake as well as for your father’s. If you look after yourself, you will be better able to look after him and will be able to remember him and these times with peace and a sense of satisfaction after he has gone.
    Wishing you all the very best!
    Prabha

    1. Shashie says:

      Thanks Prabha, its a mixed bag and no matter what guilt remains part of the deal! Thanks for your kind thoughts and responding

  3. RC says:

    Dear S,

    I am not currently a caregiver of humans but something about what you have written has moved me deeply. Perhaps it is the way you have written about your dad vis a vis his gutka and salt indulgences with no trace of rancour or perhaps it is the clarity in the way you tell your story and lay out the issues. Whatever it is, one thing shines through – your spirit. I will not insult you by speaking of ‘bravery’, because we do what we must, but your grace I salute. You say, “the best thing to give is your company”; thanks for yours on this site.

    1. shashie says:

      Thanks RC, for the encouragement, but the grace is on father’s part. he is silent and stoic and quietly accepts his fate [except for the food bit, where requests for contraband stuff like samosas etc., are made]. Just want him to go off in his sleep without more suffering, when the time comes. If he feels cared for and happy for whatever time is left, then I will feel ok.

      He gave us whatever he could.

  4. Ramana Rajgopaul says:

    I can relate to you on many things despite a lot of differences between my care receiver, my 94 year father and yours. There is an additional problem in that my father does not use his hearing aids and is almost totally deaf. I have to shout to make him understand and he gets upset thinking that I am angry. People have stopped coming to visit because he cannot hear and that is another frustration for him.

    My major issue is my inability to be comfortable when I leave the home even for short spells. I worry that he will fall down as he is feeble and fragile. If he does, till my son or I get back, there is nothing that can be done for him. That for me has meant a complete change of life style. Frustrating too!

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