The Mind, Alzheimer’s, Dementia, Mental Illness & Bereavement.


A week today my very dear friend was taken into hospital with what appeared to be a stroke. His daughter phoned to say he was on his way to hospital in an ambulance with his loving wife travelling behind in and ambulance car. I arrived just in time to hear her, in a very distressed state, talking to the doctor. They were in the room where Adrienne and I had sat with my partner after he died so suddenly in the early hours of 2007.

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I hesitated outside of the room, but I knew I must go in to comfort my friend. Taking a few short breaths I knocked and walked in and was relieved to see no death-bed, but judging by the conversation the situation was very grave.

My friend whom I shall just refer to as ‘F’ was poring out her feelings for her husband (whom I shall call ‘M’), the love of her life, yet saying she would rather let go, rather than he be a vegetable.  She felt she must sound very hard and callous to the doctor, but he fully understood and thanked her for making their mutual views known. I knew exactly what she meant, because Paul would not have wanted to be a vegetable either. In his case I wasn’t given any option as the paramedics were unable to revive him and New Years Eve is not the best time to get sick.

The doctor left the room and returned some time later to say they were going to send M for a CT scan, but before doing so we could go in to see him. We hadn’t been with him long when he suddenly rallied, though his words were very jumbled. It was then that his daughter arrived and later her husband.

The story at this stage becomes more complex and during the week there are brighter patches where it appears M was making a recovery, but then there are darker patches, like today, when I visit to find that paranoia is setting in, he refused to eat or drink as he felt he was being poisoned. Neither would he eat the food I took in and he challenged me to drink the water, which with great difficulty I did, as I had supped a mug of coffee when I arrived at the hospital, so had no desire for more liquid.

I had to leave F wondering who this stranger was, lying in the bed in front of her. I didn’t want to leave her there under the circumstances, but I needed to get home to do my colonic irrigation before I exploded in the ward. Apart from the strain on her, F is also physically disabled and no way under her own steam, could she manage the long walk through the warren of a hospital. We are just hoping M will be back to his normal self tomorrow.

When someone who has suffered brain trauma becomes violent or sexually provocative – or swears, some people believe that it is their true nature showings itself, I disagree. Yes, that may be the case, but not in the case of friend M, neither was it the case with my dad when he had dementia, for a kinder, fun-loving man never walked this earth. Never would he have made sexual innuendo to his little girl – even if I was in my fifties at the time!

However, with my mum, who has a mixture of dementia and Alzheimer’s I do see a more ‘honest’ side of her, though she tends to be as nice as pie with everyone else. With me she can be nasty and argumentative, just as I remember her on many occasions from my youth. Resenting every bit of advice I give her that would in fact make life easier – for both of us.

So I arrived home at 8pm to find she had already gone to bed, hadn’t quite got undressed, so I just had to get her cardigan on again and lead her downstairs where I made her a cuppa and a snack. If I were to let her go to bed she would be up again at midnight and ready to face the day, Unfortunately, I am not just her carer – I have to lead an ordinary life that requires me getting some sleep.

From the moment I walked through the front door and found the lights on, television blaring and no mother, I knew it would be a rough evening – and it has been. She has argued every step of the way and so three hours on I have to get it off my chest before I go to bed.

The day after M was taken ill; I arrived home from the hospital to receive a phone call telling me that Paul’s stepdaughter had been found dead on the Sunday. There is a lot of history there, spanning many years – and even longer for Paul. Suffice to say we were all friends then one night around

1.30 am the phone rang when we were in a very deep sleep. It was SD. She was all hyped up, saying all sorts of things, said she had to call someone or she would go mad and also she had to share this with us. God had spoken to her and she was going to save the world. She asked if the Koran said God was the most important thing and my mind was a complete blank, so she asked me to go and find my copy. I went downstairs, but it took me three or four minutes to find it. When I came back to the phone she had gone, so I hung up to call her back, but she rang me immediately and said ‘wasn’t that strange? She asked me to pick any passage of the Koran and I would see it would refer to saving the world. I picked a passage and read it to her, which sounded more like the complete antithesis.

She went on about the voices having spoken to her and kept asking if there was anything I wanted to ask her. She asked what was the main point of the news last week and also that Monday. After trying to get my mind into action I told her that last week India and Pakistan nearly went to war and on Monday the Americans said they had arrested someone for almost planting a dirty bomb, but that apparently happened last month, but they only disclosed it that day. To that she said something like, ‘There, that shows you’, but what exactly wasn’t explained to me. She kept flipping from one thing to another, without really explaining anything, kept writing things down and then reading the words back to me and asking if that sounded alright and if I had a question about it. She would change it and ask again for my opinion. She asked what I would like to say to Saddam Hussein. I replied that I would ask him why he was killing so many of his own people. She wrote something down like: ‘God loves Saddam Hussein’, so I asked her another question and she changed it to, ‘God forgives Saddam Hussein’ etc. She asked if I would promise to do something for her and I edged around the question until she made me promise. She wanted me to help her find John Cusack. I said if it was the actor, John Cusack he would be easy to find, but if it was another John Cusack it may be more difficult. She mentioned him dozens of times, until I wondered if he was the leader of some religious cult.

At one point she said I thought she was angry and didn’t understand and said she was going, but I managed to prevent her from hanging up. In the meantime she kept asking to speak to Paul and then back to me. She said that someone had slipped a note through the door, but it was all in Arabic. Much of the time she would start on one train of thought and then stop, saying it was too dangerous for me to hear and then go off on another tack. She said, ‘Remember when someone commits suicide and they go to their room afterwards and find they have been writing notes, well it must have been the spirits talking to them in just the way they are talking to me now, but they don’t know how to act on it and cannot cope, so they kill themselves’. She hastened to add that we were not to worry as she wasn’t going to kill herself; she knew how to handle it and was going to bring about world peace. I cannot remember most of it, but it went on for about an hour and a half and Paul had already got dressed in anticipation of going round there.  Having heard the mere mention of suicide I said it would be better to talk to me in person, rather than over the phone and Paul would come round to get her. First she said okay and then said it was too dangerous. She asked to speak to Paul and said he could only come if he brought me. I said I would come too, but by the time I got dressed and got around to her place it would take about 20 minutes. I told her to get the kettle on for a cup of coffee and to look out of the window when we knocked and only open the door if she saw it was us. In the 5 minutes it took me to get dressed she kept phoning – until we just went.

She let us in and tried to explain this feeling inside that kept stopping her from explaining fully. We stayed there for awhile, trying to get her to pack a few things to bring with, but all the time she was just concerned about tearing up the bits of paper she had been writing on.

We brought her back and she had a couple of hours sleep and started off all over again, getting violent (punched and kicked Paul) and weepy/ demanding/ loving/ obsessed with the actor John Cusack and Paul had to go and post a note she had written to him, telling him she was ready and waiting. She told me she was married to him. She went to see (in her bare feet) if Paul was posting the letter and I followed her, she then tried to lock me out of the house and I put up a terrific fight and managed to get back in – not before she rapped me on the nose with her knuckles.

I was getting more and more panicky, as I had to be at the hospital with Adrienne who had just been diagnosed with HIV, as she sometimes passes out when having blood taken and she really needed the support. It’s as much a shock to her as it is to us, as her last partner died 4 or 5 years earlier of what she was told was liver cancer (and it probably was – but possibly/probably AIDS related). She had to go and have lots of blood taken to see how advanced the infection was and Paul was going to take us there and leave us as usual and then collect us when we were finished.

As SD appeared to be undressed apart from a dressing gown, I knew I couldn’t leave her alone with Paul, as she may have accused him of anything. She was so scary that while Paul was trying to reason with her, I went and hid all the kitchen knives.

By 9 am she walked out of the house with the dog. Paul said he would take her in the car. She tried to grab the car keys off him (she doesn’t drive). He managed to keep hold of them. She dropped her things in the middle of the pavement and walked off, leaving the dog. Paul put the dog inside and then went after her, but couldn’t get her to come back. When he dropped Adrienne and I at the hospital he was able to contact SD’s mum and her sister and they came over. We knew she had gone home, because her grandma had phoned her. SD hung up, but then returned the call and asked if it was God calling. (She’s never shown any interest in religion until that night). We were worried for her safety, as she had mentioned suicide. We, her mum and her sister went to the house, but she wouldn’t let us in. We all waited round the corner from her house for 3hrs for the doctor to come, together with a psychiatrist and social worker. They had to wait for the police who took another hour to get there. They tried to gain access at around 4.30 pm and had to break the back window. One policeman went inside and then SD appeared at the window and said ‘hello’ in her usual sweet voice. I asked her to unlock the back door and with that she launched herself out of the broken window, with Paul and two policemen unable to stop her. They then had to cuff her (with Paul and me feeling like Judas). Needless to say, she was sectioned and was taken to the mental unit of the local hospital – and we were temporarily left with the dog.

None of us saw the breakdown coming and she had been at work as usual. The previous week we had booked our holiday with SD coming with us.

It’s been worse than a nightmare and this is just a fraction of it. We went to visit her in hospital and didn’t recognise the SD we once knew. It was heartbreaking.

SD couldn’t allow herself to admit there was a problem and fought every step of the way to be discharged from hospital. They did discharge her, but the following month it all kicked off again when her sister and American friend were with her. Who did they phone, but us? Alas, on account of this SD always resented Paul’s involvement and actually blamed him for her illness, saying he was ‘sapping her energy’ and didn’t want to see him and by definition, us, again. So that was the way it was.

The family were glad to see me at the funeral and without exception they all conceded that had it not been for Paul and me seven years ago, then we might have been at her funeral then. Her father thanked me for the seven extra years.

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Published by

willosworld

Born in Liverpool at the end of WW2, but raised in Skelmersdale. I first studied art in Southport from 1960-63 and worked in graphic design till I married. In December 1969 I moved to Zambia with my husband and two young children. There I taught art in the local girls school, illustrated for the National Correspondence College and did all sorts of other artwork, paid and unpaid. In 1978 I divorced and remarried in the summer of 1980. In 1985 I became ill and the following year cancer was diagnosed. There was no treatment available in Zambia and so I had to go to the UK. After recovering from a radium needle implant I went back to Zambia, but 18 months later the cancer recurred and it was off to the UK again for radical surgery. This time I realised I must stay in the UK where treatment was available, so I never returned to Zambia nor my husband. A few months later I applied for a degree course, but two years later the disease metastasised and I spent most of my final year in and out of hospital. It’s been a long hard road, but I’m still plodding on and it is now 24 years since my last cancer treatment. Because of my experience of cancer and surviving against the odds, I try and help others cope with their devastating diagnosis and prognosis.

One thought on “The Mind, Alzheimer’s, Dementia, Mental Illness & Bereavement.”

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