A LETTER FROM BRITAIN: DENIAL

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I’m staying in England for a few weeks with the intention of helping my 94 year old  “Mum” to transition from a lengthy stay in hospital back to her own home. Sadly, this is the second time this year that my Mother has been through this tough process, occasioned by terrible falls at home, and I can now claim to understand quite well, how the formidable and, at times amazing British Social Welfare state system works to help such vulnerable people. It was created in the late 1940’s after the conclusion of World War 2 and despite many government changes (good and bad) it has somehow survived. Most Western European countries followed the model too.

I thought my readers might like a change of pace and so over the next few weeks as I act as my Mum’s caregiver I will attempt to give you a transparent case study of the British Social Welfare State. Too often I read negative media reports both here and in the US as to the deficiencies of the British system. Not that everything about the Welfare state is perfect, and there are always going to be problems, but typically only the “bad news” is considered news worthy!  I will be happy to explain via this case study what can happen in real life and let the reader be the judge as to its effectiveness.

As I write this things have not gone well. I arrived the day before discharge and although my Mum came home in an ambulance the next day, she returned in another ambulance the same day! She was unable to properly walk on her frame and was unsafe. She was also unwell. She was clearly discharged too early by the National Health Service (NHS).  Both I and the Social Services in home care giver, her supervisor and manager were all agreed. Social Services responded very fast and compassionately to the developing situation, as did the emergency services and she is now back in hospital and a new plan has to be prepared for her health and welfare. A very sad day for both of us.

So this first post from Britain is a little like one of the “Letters From America” that used to be written by the famous Alistair Cooke and broadcast on the longest running radio program from 1946 to 2004; except it is written in England and being sent to America via social media!

Then in the following weeks while I remain here future “Letter’s from Britain” will describe my family’s recent personal and continuing  experience with the British Social Welfare state; but first I am going to share a little family background so you might better understand where I am coming from.

My wife (Barbara) and I have been living in America since 1989 and became US Citizens in 1998. We love living in this great country, which to me, still remains a land of opportunity. I travelled all around the world on business for close to 35 years and never found a better place than the USA! Our children grew up here, went to Thomas Jefferson’s University in Virginia, married super American girls and blessed us with wonderful grandchildren.

My wife worked as a volunteer for many years both in a hospice and later in an Alzheimer’s Special Care unit in Richmond, Virginia. As a young girl in England (she’s still “young” to me!) she trained and qualified as a Registered Nurse and when we finally moved to the Low Country eleven years ago she helped care for an Alzheimer’s sufferer with the lady’s husband (her true care partner). So my experience in volunteering is more recent than my wife’s. After some 20 months working at Memory Matters as a volunteer I’m still a rookie compared to her! But I’m learning fast from the super Program Directors, the written word in books and the news media, the Alzheimers Association, and my good wife. “Learning to Speak Alzheimer’s” by Joanne Koenig Coste is a prime example of a worthwhile educational read.

Back in 2001 my mother-in-law died after suffering from Alzheimers disease for some twelve years. My wife, Barbara, would travel to England and assist her Father Ken (Gran’pa) in caring for her Mother so as to give him a few weeks respite. Barbara’s Mother, who the whole family knew as “Granny”, went through all three stages of the disease and remained a mild mannered person throughout the ordeal, but in the last two or three years barely recognized any family member, except in one of those cloud clearing moments in time when she would say “himself” when referring to her husband. That’s an Irish expression all the way from Tipperary where she was born. The biggest problem that Barbara and her really wonderful close knit siblings (brother and thee sisters) struggled with all those terrible years was a Father who was in total denial that his wife of 50 years actually suffered with dementia. I should add that he was an otherwise extraordinary man who could speak knowledgeably on almost any topic, could build TV’s and radio, had managed a brewery in the East End of London, and proudly served in the RAF during World War 2 where he was an expert in morse code and, never ever forgot how to signal!

Granny would tell Gran’pa that she wanted to go home. Granny was referring to the farm in Ireland where she was born. Time and time again for years he would emphatically reply “this is your home and has been for many, many years”! He would frequently tell his wife not to repeat herself, and continuously corrected her statements until she got to the point where through frustration or isolation, she would withdraw into herself and not say much to him. Granny would continuously clean the kitchen sink and counter top, over and over again, and her husband would say “stop doing that, you have done it countless times”. His fuse would get shorter and his responses would be more and more abrupt. Even after she escaped the English home one night to go home to Ireland, and luckily was safely found wandering a mile away, her husband never accepted this was a dementia problem.

I should add that back in those days there was not the focus on Alzheimer’s and other dementia’s as there is now. Barbara does not recall a formal diagnosis by her Mother’s Doctor. Barbara would try to encourage her Dad to read some of the new relevant books on Alzheimer’s but he would answer “yes, I know all about that”. Sadly he did not.

But there were happy times. Barbara recalls chatting to Granny about anything and everything and “going with the flow”. In return her Mother would relax and socialize even if she did not initiate the conversation and some of the words were non-sensical. They would laugh at silly mistakes, like when she put a green bean up her nose at dinner, and even though she did not know what Barbara and her brother were laughing at, she enjoyed laughing with them! There was fun when they took her out in the car and she continued to tell them where to go even though she had macular degeneration in her eyes and no knowledge of where at all they were heading. But Barbara and her brother made light of this and Granny laughed with them!

Fast forward to today, the Doctors, National Health Service (NHS) and Social Services in Britain are very well versed in Alzheimers’s and how to treat the disease. My own Mother has suffered memory loss over the past few years but it has deteriorated especially in the last year as she has suffered significant trauma due to the falls at home. Her Doctor (regular general physician) has been most understanding and pro-active and together with me has explained to my Mum that her memory is not quite as good as it used to be. She has accepted this and his help in taking blood samples and, as a result, correcting a vitamin B12 deficiency. What a difference this made, and when the hospital “memory clinic” nurse conducted a confidential memory test, my Mum was happy that she did “rather well”!

Now I need to get back to my Mum. I hope you have found this enlightening  and interesting. To quote Bob Dylan “the times they are a-changin” and much progress has been made to combat the disease without a cure, but importantly  more people have come to realize there is no disgrace in having dementia and that there is so much help out there for the caregiver (care partner), one just has to ask.

If you, a loved one, or someone you know needs help, please do not allow “denial” as in the case of Barbara’s Father. Do call Memory Matters and ask for a confidential screening on (843) 842-6688

 

6 thoughts on “A LETTER FROM BRITAIN: DENIAL

  1. Carol Horton

    Dear Mike
    I was sorry to hear that things have not gone as well for your mom as you had hoped. Sometimes we just have to live in the moment and cherish the smallest successes, like her positive response to the B12 treatments. Whit and I will keep you and your mum in our thoughts and prayers. I thank you for this post and the history lesson…….I look forward to the next one.

    Carol Horton

    Like

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