the right to die

I noticed this story on the BBC News website today: once again someone has suggested that those with Dementia should be allowed to end their lives if they feel they are ‘a burden’ to others.

This brings back memories.

When my Father died nine years ago, I went home to help Mum with the funeral and ended up staying for a month. I had to go through all their papers as part of my role as Executor. Hidden away in one part of the study I found a stack of magazines from the Euthanasia Society. It turned out that these were Mum’s. She tried to tell me her feelings on the matter, which I suspected were somewhat parroted. Having just lost Dad, my sympathy with these ideas was not great. I rather angrily threw the magazines away with the junk.

Over the intervening years, Mum’s concern shifted from wanting to end her life at a time of her choosing to being terrified that she might be cremated alive. “When I die I want you to make sure that I’m dead,” she would anxiously tell me and I would picture myself hesitating over her prone body with a hammer. She even asked her Solicitor if she could put a stipulation about it in her Will, but we pointed out to her that by the time the Will was read it would most likely be too late. We talked about a 'Do Not Resuscitate' order, something I'd seen countless times whilst watching 'ER', but nothing was ever drawn up.

Now that Mum has Dementia, if anything I feel more resolute on this issue.

You see, I know that Mum can be so very easily influenced to believe strongly about just about anything. She is incredibly dependent, not just physically but mentally; so much so that I need to be extremely cautious what I say around her. Her ‘Self’ is so wispy and undefined these days that any strong statement from me could distort her into someone unrecognizable. I’m not going to be using words like ‘burden’ around Mum, ever.

And just because Mum is losing her wits, it doesn’t mean that she isn’t capable of enjoying the attention and stimulation she’s getting at the Home. She’s happier now than she’s been for a few years.

If Mum was sound of mind and suffering from something incurable that was only going to get worse and more painful then sure I would countenance her right to make an informed decision about the manner of her passing. But she lacks the ability to make such a choice now.

My reaction to this news story is based entirely on my experience of one individual with Dementia and I'm not claiming any authority on the subject. I haven't even read the originating article that prompted the news report. I just worry about less sympathetic carers influencing their relatives or clients for nefarious purposes. It's a gut reaction and I may revisit this subject another time.

Mothering Sunday

I turned up at 1pm with a big bunch of flowers to find Mum at the dining table clearing the last morsel from her plate. The staff member on duty gave me a guilty look - perhaps suddenly remembering that I'd phoned to tell her I was taking Mum out to lunch today. I sometimes feel like pointing out to this place that their web url contains ".org", which stands for "organisation" - something they noticeably lack.

The table was booked for 1:30pm at a Restaurant about 5 minutes away by car, so we got there 20 minutes late. Since the parking was around the back and Mum walks so slowly that passing glaciers tut as they overtake, I let her out of the car directly in front of the Restaurant and said, "There's the door - follow those people inside and tell them we have a reservation. I'll park and join you in a minute." I found a space and ran back around the corner to find a gaggle of old ladies assisting Mum, who had managed to walk another 20 yards down the road and had been trying to enter a private house, telling the owner that she was sure she had a reservation. Mum wore her usual beaming bewildered expression that is there whenever she is the centre of attention.

I thought maybe Mum would perhaps just manage a starter and dessert, but she ate a whole second lunch. At the table she regaled me with the same stories of Screaming Lady and the Gentleman, who has morphed over the weeks into Screaming Lady's husband in Mum's imagination. She's still calling the Home "that Hotel I'm living in". She tells me the same stories every time we speak.

A very large lady came in at one point and sat at the next table. Mum very loudly commented that the lady's blouse was not the best choice for someone so fat. I think even the kitchen staff heard that one.

We had a good afternoon and I didn't get frustrated with her once. Well, it was Mothers' Day and not "Chronically Single Sons' Day", after all. I must look up that date.

rude

There's a woman in Mum's household who screams at her.

She's a rather angry-looking crone who seems to have claimed (unilaterally) the one and only male resident (at least 20 years her junior) as her love interest. Apparently she will put her arms around his neck and hang off him until the staff can pull her away. Whenever Mum is about, this woman is hostile, and I suspect that she sees Mum as a rival. It's another form of dementia, of course.

I saw this woman there a few weeks ago on my last visit. The four residents of the household were eating and those of us visiting were having a rather stilted conversation across the table. The crone was sulking powerfully as we engaged her paramour. He was talking about his time overseas.

"I had a cousin who lived in Canada," announced the crone, interrupting Mum as she began to say something.

A few minutes later, in the course of conversation, Mum tried her best to engage this woman by making reference to this cousin.

"What is she saying?" cried the woman, "I don't understand what she's saying!"

Mum blushed quite redly but kept her temper and repeated herself again calmly.

I wanted to remove Mum from this awful situation, this embarrassment and indignity, but it was another case where I realised that Mum is still capable of fighting her own battles sometimes. There's no reason to concede to this woman when the home is just as much Mum's as hers. It's my guilt at being responsible for Mum's move that is behind my desire to remove her at the first sign of difficulty. It's obvious that Mum still thinks this place offers enough to balance one difficult woman.

what I have learned in 2007: different types of dementia

2007 has been an education for me in lots of ways. Finally getting my Mum's problems investigated has meant that I've learned some distinctions between various types of dementia. I thought I'd share these here, for anyone reading who's going through a similar process.

'Senile Dementia' is a general term which groups all the different types of dementia experienced by the elderly into one category. Of course, the most common form of dementia is Alzheimer's Disease, accounting for roughly two thirds of cases in the over-65s. Alzheimer's Disease is a degeneration of nerve cells and their connections. Protein deposits tend to accumulate in the brains of Alzheimer's sufferers, but it hasn't yet been determined if this is a cause or effect of the problem. Progression of the disease can be gradual. I'm not going to write any more about this form of dementia, because there is so much information about it elsewhere.

However, there are several other types of dementia. Another form is Vascular Dementia. Vascular Dementia describes a number of conditions linked by a vascular cause (e.g. Hypertension, Stroke, Atrial Fibrillation). Often caused by a series of mini-strokes in the brain (Multi-infarct dementia), the disease tends to progress in a series of steps depending on the severity of each progressive stroke. Small steps leave the symptoms looking much like Alzheimer's, but it's equally possible for a major stroke to cause significant sudden loss of abilities. Each stoke cuts off or blocks blood flow to part of the brain, depriving it of oxygen and nutrients, leading to the death of that section. These dead areas, or lesions, are what a CT scan picks up.

Then there is Lewy Body Disease (Dementia with Lewy Bodies), in which small deposits of protein accumulate in the nerve cells of the cerebral cortex. The sufferer experiences persistent hallucinations, perhaps seeing a person in the same chair over and over. Here, the confusion can fluctuate such that a Carer might believe that the sufferer is 'pretending'. Parkinson-type symptoms like tremors or rigidity are associated with this type of dementia. As the disease progresses over several years, the sufferer experiences memory loss and his or her language skills will deteriorate.

Fronto-Temporal Dementia (grouped with Pick's Disease and Primary Progressive Aphasia) is a rare and slowly-progressing condition where the sufferer's personality changes, perhaps resulting in a loss of inhibition or sudden inappropriate rudeness or maybe a loss of emotional warmth and empathy. Over-eating or a craving for sweet foods is an indicator here (maybe I should get myself diagnosed?), as is a change in sexual behaviour. In this group, memory loss is not usual in the early stages, but a decline in ability to communicate sometimes gives the impression that memory problems exist. As the disease progresses, reading and writing skills deteriorate along with numerical skills. The sufferer will likely develop problems handling money. Some sufferers develop obsessive behaviours, with repeated hand-washing or similar activities. This group of diseases is characterised by more localised damage in the frontal or temporal lobes. Primary Progressive Aphasia attacks cells in areas of the frontal lobe particularly associated with speech. Pick's Disease is caused by abnormal or swollen cells or abnormal protein deposits within cells in the fronto-temporal areas.

In Mum's case, she has what's known as a 'mixed pathology', with the problem chiefly being Vascular Dementia but with some other damage present that could be due to one or several of the other forms listed above. I've certainly noticed a marked loss of empathy, her increased selfishness, and her preferred diet of sweet foods. This and her deterioration of abilities to deal with money give me reason to suspect that there's a fronto-temporal aspect to her condition, too. Then again, I have observed Mum having Lewy-Body hallucinations on many occasions over the past 5 or 6 years. She sees someone standing in a street and is convinced that she saw them standing in exactly that spot yesterday, and will not budge from the assertion, even if I tell her we were 300 miles away yesterday.