My mum, the elephant and me #3 decisions

Dear Mum

 I am in India, in Neral, a lovely place in the hills about 50 miles east of Mumbai.

I am here to see a retirement resort and talk to the people who live here. Let me explain why:

• At first I thought that it was just an extension of your personality, which often happens as a person ages but as you have known for some years but have, for perfectly understandable reasons, refused to acknowledge, you have Alzheimer’s-related dementia and, if we are honest, you have been showing symptoms for 10 years, perhaps more. 
• You have managed your daily life well as long as everything goes according to your established routine. But if anything changes in your life  and is not exactly as you want it according to your daily routine you start to worry and panic. Something as simple as a lift that doesn’t come immediately  will make you kick the doors in fury.
• When we came to India in 2009, you panicked as soon as our driver strayed off the route you knew; switching on the lights or the television in your room was impossible or you to learn. This resulted in you banging on the Boywonder’s  door in the middle of the night. He was 13 years old.
• I am afraid that this behaviour of yours has alienated the remaining members of your family so that they no longer welcome you to come and stay at their houses in India. Do you remember when they put you on an aeroplane in January 2012 without telling me? The first I knew of it was when I received a phone call from staff at the Heathrow Airport information desk to tell me that you had arrived there and were confused. I asked them to put you in a taxi to your home, and I waited for you. When your arrived, you were so bewildered that you did not know which country, which continent you were on. So much for families caring for each other.
• Do you wonder why your friends no longer ask you to visit them? This is because of an incident when you found yourself unable to remember how to go to your friend’s in Sutton because you were in Lewisham and not at home so the instructions for getting there were no longer valid. So you asked a stranger for help. He was very kind and took you all the way to Sutton but you invited him in to someone else’s home and they had no way of knowing whether he was a kind, helpful person or a potential criminal. This is why they can no longer risk asking you to come and see them.
• Morre recently, you have sat in your own doctors’ surgery or in other local health centres and chemist’s shops up to four times in a week and refused to leave without a prescription. I receive frantic phone calls from the shop staff or doctor’s receptionists. Then you have walked around the doctors’ waiting rooms asking complete strangers or a lift home. This is very risky behaviour and cannot continue. It is unsafe for you to do this.
• You walk out into the road and expect the traffic to stop. Recently you were nearly run over by a speeding police car. The next time you do this, you might be killed on Bromley Road. Many people have told me about these incidents.
• You will agree that your short term memory has become worse over time, but I am afraid it is more than a case of old age. You are becoming increasingly repetitive: there are times when you and I will have the same conversation over and over again in an infinite loop for 20 times during the hour that you are visiting me. This state of affairs has existed for about 2 years but recently I noticed that you have become even more repetitive and forgetful.
• When I came as arranged to collect you at 10 am on Christmas Day, you were still not dressed and you did not know which day it was. Since then you rarely know the day or the time. You cannot keep this information in your head for long.
• And just last week you asked me how my family was but you were sure I had two boys. I don’t have two boys, Mum. I have a boy and a girl and you forgot long ago their ages, let alone their birthdays.
• More recently, you are refusing to let your cleaning lady into your flat to clean, yet going downstairs and shouting for her early in the morning. I have heard that several people are complaining about this. 
• You have now started to complain that people are coming into your room and taking your stuff, yet you hoard junk mail and envelopes and plastic bags and often leave your door open when you go downstairs. You say you occupy yourself with housework: you have not done any housework for around a decade.
• Your clothes are often filthy and full of holes yet you will not let me wash them or wash them yourself. You refuse to wear anything I buy you because you refuse to accept anything from me. I understand that this is your way of keeping a certain amount of control over the frightening situation, as you know that you are dependent on my management of your money and bills and your healthcare. 
• I have been very concerned about your health and state of mind for several years but because of all the above points, and these are by no means the only problems that have occurred, I feel that I can no longer carry on muddling through and hoping that no harm will come to you.

So the purpose of my visit here to India is to try and explore the options for your care in the future. I am here to try and find the best, happiest, solution to a problem that has become increasingly urgent in the last little while.

The problem is that you can no longer carry on living in your apartment. It is not a care home for older people and the managers are there only to keep an eye on you and not provide the level of support to you that you increasingly need. I think you are expecting them to provide individual care for you and cater to your every whim and this is simply not their job. And they have to think of the needs of the other residents, something you are simply not capable of understanding.

The management company of your block believe that, without an urgent increase in your level of care and support, it is not safe for you to go on living there. With great reluctance, I agree.

Now, we have to consider our choices or the future. They are fairly stark:

- We arrange some sort of daily care for you to remind you to take your tablets; to make sure that you are dressed in clean clothes; to help with your personal care which, I’m afraid, you are not always managing. I am not sure whether this will address the concerns of the people at your apartment block. Knowing how you behave towards people there, I suspect not. It would also mean that you would have to adapt your routine to when the carers arrived and I think you would either not do that or simply forget that they are coming. I also suspect that you would not accept this sort of care, as you do not accept that there is anything wrong with you. 

- In any case I suspect that this would be only a short term solution. We could try and secure a placed in a so-called “extra-care” home while you can still maintain your independence. But this would mean a change in your address and your routine and I think it would be difficult to adapt your daily trips outside. In any case, you would have to move again as your dementia progressed.

Neither of the above addresses the concerns we have for your safety in traffic and with strangers.

- You could try and engage a live-in carer to help you with your needs. I think it would be difficult to find the right person with the right cultural and personality fit and your small one-bedroom apartment does not have space for anyone to live with you. 

- You could move into a residential care home in the UK that caters for people with progressive dementia. Whilst I have heard that these can be very good, this option will severely restrict or even curtail your independence. So, whilst you will be safe from traffic and strangers who might take advantage of you, I think you will be miserable such a place.. Truth be told, I have long dreaded the thought of you in a place where staff would find it difficult to address your needs in terms of your language; your food; the way you dress and your cultural outlook. Even if we moved you to, say Southall or Harrow, there would be unlikely to be any speakers of Marathi there to look after you. You might not want to acknowledge it, mum, but you are losing your grip on English and reverting to the language you used in your youth. At times you seem unaware that you are speaking Marathi to someone who simply cannot understand you. 

- I know that you often say that people look after their elderly parents in their homes in India. Increasingly this is not the case. People are just as busy in India as we are in the UK. And in the UK there are no servants to help with cleaning or personal care or cooking. To be brutally frank, I have already sacrificed my working life to look after my husband and children and I simply don’t want to spend the next ten or twenty years, until I too am old, being your carer. let's be honest: we have never had anything in common nor ever been on the same wavelength. Our conversation is one way, from you to me. Again and again. You've never listened and you listen still less now. To me, that path can only result in everyone’s misery. I know it is difficult to read and to hear but it is the truth.

- So now we come to the final option that I have been checking out here. This is a retirement community in Maharashtra. There are bungalows here for people from the age of 55 who want to live in a secure community where all their needs are met.

There are a few people with physical disabilities who live in bungalows where they have carers to assist them with washing and dressing. People with dementia, unfortunately, do not fit into this category, I learned today. This is sad because I thought that this approach would be ideal for you. Perhaps I am unwilling to admit the extent of your condition. But the fact is that people do not want to be faced all the time with the mood swings and strange behaviour of dementia sufferers. It frightens them and reminds them of their own mortality. Indeed, I understand that there is a hereditary element to dementia so I wonder if or when I shall go on to develop the disease. This frightens me.

And there are people here who specialise in the care of people with progressive dementia. I spoke to the dementia specialist doctor here this morning and was very impressed with the standard of care and the activities they put on to help people with this frightening condition. I have been impressed with the compassion in daily care shown by the staff here and I think you would be in good hands here. Anything to do with your new hearing aid is fixable here or I can sort it out in the UK.

Think about it for moment. The real choice is between:

- a care home in the UK that has no hope of meeting your cultural needs, where you would be in constant pain from your arthritic knee 

OR

- the care facility here in India. It is a beautiful place in the green hills away from noise and the build up of litter that increasingly chokes this country. Where they will cook your food and wash your clothes. Where they will buy anything you need on your behalf. Where it is clean and safe and away from traffic and pollution. Where they speak Marathi and Hindi and English too. Where you can have Marathi language films and TV programmes in your own room. Where they cook healthy, tasty Maharashtrian food for you. Where there is a Ganesha and Lakshmi temple and they celebrate festivals like Diwali and have bhajans and spiritual songs every day. Where there are facilities for exercise and massage and constant medical checks. Where the sky is blue and the weather is warm and you would not have to suffer so much from your arthritis. 

I know that it would mean separation from me and my family but just last week you had forgotten what my family actually comprised. And we would visit you and help with your care and bring supplies and medicines. 

You have entrusted me with the major decisions for your life. In my heart of hearts I think this place would give you a far happier, far less isolated life than you are living at present. 

My concern is that you are not quite at the stage where you need 24 hours supervision but it is quite plain that you are no longer capable of living independently. And your condition is worsening. I have postponed this as long as possible because I have no intention of trampling over your human rights. I know you won't agree but, even in your periods of total lucidity, you have lost the power of reasoning that will enable you to think critically about the options. So whiles I have set all the points above out to try and help you, us, reach a conclusion, I know that there is no hope of you actual reading this or even acknowledging it as an option. You want to stay where you are but the fact is that you can't. So what on earth do we do for the best?

What do you think?

Gita