Care Giving II.

FEATURE

Continuing from where I left off yesterday, let me start off by going back to the beginning of my caregiving experiences.

Urmeela suffered multiple cardiac and cerebral infarcts in 2001. After the initial hospitalisation and coming home she was advised to be careful and I was in turn told that her condition would have to be medically managed for the rest of her life. The infarcts enfeebled her and led to dementia as well. She had to be on medication and moderate exercise and generally kept without stress.

We were able to provide her with all these till her end which was sudden, painless and totally unexpected. There was just one hiccup and that was when I had to go to Tamil Nadu on a very lucrative assignment and I took her with me. She had all the material comforts that she had back at home, but was generally unhappy there as she could not understand or converse in the local language there and the neighbours were incapable of speaking or understanding English or Hindi. Since by that time Ranjan had married and well settled she went back home and became her normal self. Normal to the extent that her condition permitted. She however missed my company and therefore, I wound up my assignment earlier than I otherwise would have and returned to Pune to be with her.

In my father’s case, it was at Urmeela’s insistence that I agreed to take him in when his second wife died and her children conveyed their inability to care for him at the age of 91. He came to stay with us and we provided him with all the material comforts that he wanted including some that he had never had before. Four months after his arrival at our place, Urmeela died and since Ranjan by then had been divorced, our home became a home of three single men, each with his own priorities and quirks.

As I write this I am sharing my insights of what must have happened to my father to make his stay with us so unpleasant compared to the time I had with another care-receiver.

Till he moved in with us, my father had led a very independent and self centered life with his own set of friends, admirers and contacts. His move to our home in a different state and city where he had no friends or contacts other than his immediate family was the first big setback for him. That he had to adjust to a different rhythm in just about all walks of life for him must have been quite a task for a 91 year old man who had lived on his own terms till then. Being my father, he also expected that I would kowtow to him and let him be the alpha male at home, which I, by then a well settled old bandicoot myself would have nothing to do with. I tried to make him understand that he was at my home, not his and he had to observe my way of doing things. In retrospect, I think that this was the most galling aspect of his time with us for him,  and I now really regret that I did not have the sense to have handled the situation differently.

I find it extremely difficult to be away from home and my comfort zone, and for him it must have been a traumatic change but I did not have the sensitivity to understand that. I was carrying a lot of baggage of my earlier relationship with him.   His end was messy and the last six months of his life was the most difficult for me and Ranjan.    His death came as a great relief.  It is after his death that I was able to  think about the four years that he spent with me dispassionately and how perhaps I could have handled the relationship differently.

Dilip’s father’s story is very much like my father’s. A fiercely independent individual who made good on his own and brought up two children to be good human beings. The daughter is married and not in a position to take him in. Dilip himself is just starting his life after a series of failures. He and his wife both work like almost all young people now have to do to provide good education for their two children and to pay off their mortgages. The old man has no place to live in having retired from a government job that had provided accommodation to him till his last working day. Keeping the father with the family in a small little apartment was proving to be difficult with the old man getting into incontinence and dementia and not willing to accept that he is now in need of professional care. Dilip has arranged to put his father in an assisted living facility, but the management of the facility is not able to handle the tantrums that the old man throws and want him to be removed from the facility. Dilip is now in a great dilemma and that is when he came to seek my advice.

All that I could do for Dilip was to share with him some of the mistakes that I made as well as some insights that I gained from such mistakes subsequently. Since I did not have any experience in handling an outside agency like Dilip now has to handle, I was not able to be of help there. I however have asked him to seek medical advice for his father’s condition at the home and to see if he cannot be managed medically. Unfortunately, the kind of home that Dilip can afford does not provide in house medical facilities and so an outside consultant will have to be arranged for and I hope that with such an intervention, the situation will improve and the old man will calm down.

The insight that I shared most with Dilip is the one about the loss of independence that affects old people most and how I was unable to understand this as being the cause for my father’s behaviour. Dilip seems to have understood this and hopefully he would be able to manage his difficulties better than he has been able to hitherto.

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21 Responses to Care Giving II.

  1. bikehikebabe says:

    Yes. Loss of independence was his biggest stumbling block & to understand that would be helpful. It limited some of your independence too. All you can do is 😀 😀 🙂

    • I know that feeling well BHB. Everytime I go out of town, the way I want to return home has given me enough experience of my idea of independence and comfort zones.

  2. shackman says:

    my situation was different in as much as Lynn did not lose her independence in the same manner. HD caused almost immediate dementia from the time it was diagnosed. It progressively worsened until the end. More troub;ling were the huge personality changes that led to regular bouts of violence most typically directed at me. I was physically attacked on a regular basis. She knew what she was doing, knew it was wrong but lacked any selfcontrol – all normal in many cases of HD. Eventually she could not walk without assistance and it was at that point we turned to hospice for assistance. Lynn’s last 6 months saw her bedridden in a hospital bed set up in our living room. Her decline from that point was like a snowball rolling downhill – a very steep hill. Hospice nurses visited weekly and aides came every other day.
    She essentially was gone – not herself in any measurable way for the last 3 years of her life. I have no way of knowing what she thought or how she felt beyond the occasional grunt every morning when I greeted her and asked i=how she was and if she wanted breakfast. I still occasionally feel guilty for feeling a sense of relief when she passed. It sounds like the outside agency Dillip is dealing with is similar to the Hospice care for Lynn and it was great to have real help in the end.
    shackman recently posted..Over Spending

    • I have interacted with a number of caregivers and each story is different because each care receiver is different. Even where the disease is common, say like dementia, the degrees of its manifestation can make a lot of difference. Bar some stray incidents and one organised set up in Chennai, we do not have the hospice system as it exists in the US. I wish that it did though.

  3. Growing old cheerfully and gracefully is no mean achievement. I had a good chance to practice this last spring with shingles in my left eye and was encouraged by how I handled it. (With the help of Netflix comedies.) But, of course, we have no control over dementia and our society makes it hard to choose when we can say goodbye. I read an article a couple of years ago about I woman who went to Switzerland for doctor-assisted suicide. Her family couldn’t go with her to provide loving support because they would have been thrown in jail when they returned to England. Compassion and Choices is one of my favorite charities.
    Cheerful Monk recently posted..A Big Project

  4. Loss of independence is a huge hurdle to overcome for many older persons. It may well be the same for us, when that time comes. It is admirable that you are able to demonstrate your wisdom, and have it accepted so readily. For some of us, advice is not nearly so well received!
    Still the Lucky Few recently posted..Motivating Seniors to Exercise

  5. Cathy in NZ says:

    I remember the times with your Father, and I can understand how difficult it was for you all – trying to do the best under trying circumstances…I don’t think we truly understand ourselves when it comes to our personal independence – under any particular circumstances.

    I am trying to rid myself of the furniture that belongs to the family in the house at the front here, not related to me – only thing in common we are neighbours and we have the same landlord. The furniture situation has got out of hand and I want it either moved completely or corralled in a better way! They have 3 weeks to deal with it!!!

    I actually want my basement garage back as I’ve got some art projects that need undercover and large space without the hindrance of their junk – and although there are spaces upstairs there is also the interior decoration/carpets to consider!

    • I am surprised that your neighbour can give you such problems. Here, he would face the wrath of other neighbours who will come to the help of ladies like you.

      • Cathy in NZ says:

        family now know the full extent of the problem and it’s possible that if it’s not shifted by xmas – it will be manhandled to their driveway and left! See a reply on one of my blog messages, I think late last week…but just added reply tonight…

  6. tammy j says:

    how very sad for everyone involved.
    which only heightens my belief that people need to learn to be at peace with their own solitude. it doesn’t mean you give up on life. it simply means that you learn to have joy in your own company. therefore you can relax wherever you find yourself. that’s what i tell myself anyway!
    but i really do believe it.
    i hope you don’t waste any moment feeling guilty rummy. about your dad i mean. you were wonderful to him as far as i remember. there was nothing easy about it. and i agree… you now have the wisdom from it to share with others who might need it.
    tammy j recently posted..a toast to life

    • In both Dilip’s father’s and my father’s cases, it is simply a matter of losing their importance in the general scheme of things. My father suddenly was a nobody in a new environment and Dilip’s father having been part of the military establishment all his life, suddenly found himself at loose ends and the children all grown up and involved in their own affairs. Neither could have anticipated their later life situation. My father most certainly did not expect to outlive his wife who was twenty years his junior.

  7. kylie says:

    a friend of mine is 70+ and caring for a 103 year old mother. She never complains but i see that it has taken away many of her opportunities for a pleasant retirement and old age. Caring for the elderly is, in some ways a lot more difficult than caring for a child.

    As for your particular story: hindsight is a bittersweet thing!
    kylie recently posted..Normal-ish service resuming

  8. Shikha Aleya says:

    Your piece gave me much to chew on. Wisdom and insight comes from experiences that are in themselves a very high price. I think that life just is what it is and any of us at any point in time thinks, decides and acts to the best of our capacity at that time.
    Shikha Aleya recently posted..Overseas caregivers

    • Yes, while in the midst of what seems to be such a heavy responsibility and our own mechanisms to respond being at variance with each other, we do pay a very high price. In retrospect however, we are glad that we have come out of the experience intact and stronger.

  9. Mother says:

    Isn’t it sad that we learn so much by hindsight…but at least we learn. I think we will all struggle if and when we must give up our independence. That is probably why in my culture most are reticent to move from their own home – this represents all we hold to so tenaciously. Good that you can advise the younger generation. It will make it easier, perhaps, for Dilip’s father.
    Mother recently posted..Thanksgiving

    • Our culture too has undergone a lot of change in the last three or so decades Mother. Urban living has made it next to impossible to accommodate additional members of the family in small apartments and alternatives such as homes and assisted living too are learning how to go about being caregivers.

  10. Max Coutinho says:

    Hi Rummy,

    Loss of independence is what most of us fear when reaching old age; so I understand exactly what your father felt and Dilip’s father is feeling. Humans need to feel like they are in control of their lives, their surroundings; it’s human nature I’d say.

    Very endearing post, my friend. Thank you for sharing.

    Cheers
    Max Coutinho recently posted..World Terrorist Attacks Preceded by Terror in Israel

    • My pleasure Max. I can myself see how much my behaviour depends on my sense of independence. My wanting to be in my own comfort zone is also part of such a sense.

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