An Insider view of Dementia

Thanks to Kenneth who has shares his story here both his own experiences and some views of the challenges of dementia.

In late February 2013, l was admitted to the Bethlehem Hospital with suicidal thoughts and a lost will to live. Years of sleep deprivation, drinking and a persistent depression had finally caught up with me.  Like so many others in a similar situation, it was a series of major changes in my life that was the root cause to my depression.  I am not going to make a novel out of this, but, a brief background description will make it easier to understand why this hap- pened.  I am a 67 year old male, originally from Sweden, but, mar- ried and living (on and off) in Britain since 1980. I spent most of my working life overseas, mainly in Saudi Arabia, but also in Iraq, Libya and West Africa.  I am an engineer by profession and worked in the construction and oil industry. My life has been mostly good, interesting and in many ways a great adventure. I was fortunate to be able to have my family with me on most of my work sites so my marriage was never under stress due to any long separations. I returned to the UK for good in 2004/05, and started my own business. All in all, l was doing fine and on track to build up a comfortable retirement a few years down the line.  Then disaster struck and it was such a complete life changer that l feel lucky to still be alive.  On the 5th  September 2008, a day l will never forget, the rubbish collectors, collecting rubbish from my house, dumped a wheelie bin on top of my head. This accident caused a crushed spine and years of hell on earth. Without going into any details about treatment and aftercare, which was excellent, the result was pain and on a scale l can no longer describe in words. Suffice it to say that I spent the next two years not able to lie down and not able to sleep.

The resulting sleep deprivation eventually led to desperation and by the end of 2009, I was exhausted, depressed and drinking heavily. It had become so bad that I was forced to move out of my home as I kept the family awake throughout the night as well as being aggressive and to be frank; impossible to live with.  

By the end of January 2014, I was in such a bad state that I seriously considered taking my own life. Fortunately for me I was then staying with my wife and daughter who realised the gravity of my situation. They contacted the Community Mental Health Team at Croydon Integrated Mental Health of Older Adults Services. Dr Semhagne visited me directly and by February 2014, I was admitted to Chesham House, Bethlem Royal Hospital in Beckenham, Kent. I spent the following 3 weeks at Chelsham House under the care of Dr Bandy and that was the best thing that could possibly happen to me. I re- covered very quickly, managed to sleep and get my depression under control. I was fortunate to also receive help from DrMcGuinness, the resident psychologist with treatment at the hospital as well as after care in the community.  

I cannot describe in words what this help meant to me, but, the result was that I became a much better, healthier and positive person than I've been for years. I'm not kidding myself into believing I am  suddenly, by some mira- cle, cured of all the problems  that have affected me, but, with a bit of awareness and care with my lifestyle, I should not have any future problems. After the first week at Chelsham House I had recovered enough to be aware of my surroundings and it came as a shock. Chelsham House is what is termed as a mixed ward, i.e. they care for elderly patients suffering from a vari- ety of mental disorders such as depression, alcohol mis- use, bi-polar disorders and dementia; in its various forms.

I have never been sick like this before and never been exposed to dementia at all. No-one in my family has suffered from dementia, this was something completely new to me. What affected me most was the utter frustration felt by those affected and it touched my heart. It is such a devastating affliction both for the patient as well as for those near to him/her. I learned that there were several stages of the disease. From mildly confused to the latter stages, but, as I experienced it, all depressed and unable to understand what was happening to them. For some, the frustration of not remembering, even short term, to not remembering how to pick up a knife and fork. To me it was a harrow-ing experience, but something I'm glad I could see first -hand as it is something that will affect so many of us. With the changes and im- provements to our life expectancy at least some 25% to 30% of the population will be affected by dementia.  

I decided there and then that I would volunteer and help out with the on-going work by SlaM's efforts in research and treatment of the elderly in general and the problems surrounding dementia and depression in particular. As stated above I am Swedish and Sweden has always managed to deal with this type of problems at a very early stage. Preventive care and medicine has always been at the forefront of our thinking, whatever the problem has been. Currently massive research is done around the issues of dementia. There are a multitude of papers written around the problem and I am now trying to translate and condense these papers in to English. 

The Power of Story   - The Long and Winding Road by Kenneth Lindgren 

Page 1 Volume 1, Issue 1 

There's a lot of work associated with this and will take some time, but, I am planning to present the result here as soon as possible.  

Finally, to illustrate the attitude in Sweden towards dementia I would recommend the readers to see Henning Mankells’ new Wallander series, currently showing on Saturdays at BBC 4. In this last of the Wallander series, Wallander has been diagnosed as suffering from Alzheimer’s. Wallander is a typical Swedish police/detective series, but, with the difference that it also raises in social is- sues and problems. What affected me most was in the last episode where the doctor tells Wallander that he has to inform his daughter and family that he has Alzheimer’s. The doctor says to Wallander .'' You have to tell them as she (his daugh- ter) is the one who's going to care for you when it gets worse. The current medication will only brake the onset of the disease, it's not a cure''.  Wallander looks at the doctor and then he says '' But if she don't want to or can’t take care of me, what then, what then?''  These words are the very essence of the problem. What if no-one is there to help you when you start to get really ill, what on earth then?  

Life is a long and winding road and most of us get through it without any thoughts of old age and dementia. The fact that it will affect so many of us and the suffering by patients, families and the strain on the health system as well as finances should make us think and hopefully change in attitude. There will be a great demand for voluntary help and I hope to assist in whatever form I can and that is needed.  Kenneth Lindgren