My Kind of Day

This article is taken from Signpost to Older People and Mental Health Matters Journal Vol 5(3) February 2001 and is reproduced here with kind permission by the Signpost Editorial Team

 

David and Stuart live together in a stable gay relationship, but there is a measure of instability in their day-to-day lives. David was diagnosed with Lewy Body Disease (LBD) four years ago. They live in Scotland.

Lewy Bodies are tiny spherical structures occurring in the nerve cells in the brain and spinal cords of people with certain kinds of neurodegenerative disease, such as Parkinson's Disease (PD). They were identified in 1912 by Frederic Lewy, a scientist, but it was not until the 1970s that research began in earnest. It was based on post-mortems of patients who had been documented as suffering from PD and atypical Alzheimer's disease. Although many of the physical symptoms of LBD are similar to those of PD, Lewy Bodies are found in parts of the brain not usually affected by PD.

David has reached the stage of physical disability which entitles him to receive the higher rate of the mobility component of Disability Living Allowance. He experiences tremors, loss of balance, painful cramps, sometimes numbness in his limbs and torso, and other conditions which come under the umbrella heading of Dystonia. Stuart receives Invalid Care Allowance and they have a car on the Motability scheme. Stuart learned to drive only recently because of his partner's increasing physical disabilities. Social Services has equipped their home with extra banisters and grab-rails, and there is a wheelchair sitting in the hall which David has not had to use - yet.

But it is not so much that his partner may one day be bed-ridden that frightens Stuart. He feels up to coping with that. It is David's failing cognitive faculties and the onset of dementia which are the hardest to bear. David has hallucinations, delusions and wild mood swings. On his "good" days he can hold an intelligent conversation and carry out his share of everyday domestic tasks. But despite medication to control the physical and mental symptoms of this little-understood and ultimately fatal disease, Stuart can never predict when David will have a "bad" day. David is 48 and Stuart is 53. (These are not their real names and some personal details have been changed. Stuart requested anonymity because David insists that no-one must know his mental faculties are degenerating. He told us that when David finds copies of Signpost or any other publication to do with mental health, he destroys them.)

Stuart describes a day in their life

I woke up in the middle of the night with my stomach turning over. I had been dreaming of the day a specialist told us, "David has Lewy Body Disease". We had never heard of it, and when we asked what it was, were gingerly told, "Well, it's not a very nice thing to have".

But never mind that. Where is David? His side of the bed is empty. Quickly, I jump out of bed and rush downstairs. It is three o'clock in the morning. As he has been known to walk the streets aimlessly in the middle of the night, I am worried.

Thank heavens. I can hear his voice. He is red-faced and agitated and speaking on the 'phone to his brother. He is used to what he calls his "strange" telephone calls. What he is saying makes sense, but none of it is true. Every so often David gets bees in his bonnet about a state of affairs which does not exist.

When he sees me he smiles and says, "Here, come and speak to Paul". I do not protest that it is three o'clock in the morning and that his brother needs his sleep. He and I exchange pleasantries. I pass the phone back to David and he ends his call to Paul amiably and sensibly. Then he abruptly demands, "Make me a coffee". I gently suggest that drinking coffee when we should be asleep is perhaps not a good idea. I've made this mistake before.

"Why do you always contradict everything I say?", he shouts at me. His face is screwed up with rage. There have been past occasions when he's been physically violent towards me, so I put the kettle on. My stomach turns over again as my mind flashes back to the evening I had to call the police for my own safety, and another night when an emergency doctor decided the best thing to do was to drive us to a psychiatric hospital.

I bring the coffee, sit beside him on the sofa, try to cuddle him and calm him down. My efforts don't work very well. He pushes the coffee to one side, and in an aggressive tone of voice says, "That's it. I'm finished with doctors. No more pills. Cancel all my appointments. Chuck the pills down the loo. We're going to America. Tomorrow! Get on the phone now! Book it! I'm not staying shut up in these four walls. And you've got to change your Will and leave Bob (his cousin) £300,000!"

Needless to say, he is in no fit state to go anywhere, let alone America, I have never had £300,000 in my life, and Bob is much better off than we are.

But it is no use gainsaying him. I agree to all this. Eventually he calms down, and he says, "I do love you, you know". I reassure him that I love him and suggest we go back to bed. Slowly, his mood swings back to normal and we go to bed.

He falls asleep immediately, but my mind is in turmoil. I do a small amount of work from home and have a deadline to meet in the morning, and David has an appointment with his psychiatrist - or is it his cognitive therapist? Oh dear, I've forgotten. I set the alarm clock for 7am and make a mental note to look in my diary first thing. Almost every week is peppered with appointments for David.

A combination of the LBD and his medication has brought on asthma, diabetes, high blood pressure (our GP thinks he's already had one ischaemic attack), obesity and general damage to his immune system. So in addition to a neurologist, a psychiatrist and a cognitive therapist, he also has regular appointments with a dietician, a respiratory specialist, a chiropodist, and attends a diabetic clinic,. There are also frequent visits to the dentist since the day he went out without his walking stick, fell flat on his face and smashed his front teeth.

Eventually I get some sleep, but before the alarm goes off I'm aware that he's got out of bed again. I find him outside cleaning the downstairs windows in the freezing cold. He had cleaned all the windows only a few days previously. He has an obsession with cleanliness - no bad thing perhaps, except that my clothes are wearing out because he incessantly puts them through the washing-machine irrespective of whether they are dirty.

I sigh with relief because he is not agitated and seems in a reasonable frame of mind. He comes inside and takes his morning medication. I look in the diary and remind him that he has an appointment with his psychiatrist. Sometimes he refuses to go, but today he agrees. I want to drive him there. He insists he can go alone by bus.

I constantly walk on eggshells, trying to steer a path between letting him be a bit independent and ensuring that no danger befalls him.

To my pleasant surprise he decides that I should drive him and also come in to meet the psychiatrist. Quite often he is dead against me meeting or even talking to any of his doctors or specialists. Out of David's earshot, I make a 'phone call and promise that I will get the work done that afternoon. He gets upset if he thinks his illness is causing me to miss out on much-needed work and money, or even on a social event. So I don't tell him if I've had to cancel anything.

The session with the psychiatrist goes well. Afterwards, I'm anxious to go home and work, but David has other ideas. One of his greatest pleasures is rummaging in charity shops and buying all sorts of things we don't need. But he's in a good mood and it does me good to see him happy rather than agitated and distressed. So we spend the rest of the morning drifting in and out of charity shops and come away with a car boot full of what to my mind is junk but to David his "treasures".

We go home and have lunch. I get on with my work. Going out has tired David and he dozes on the sofa most of the afternoon. Phew! Sometimes his agitation and difficult behaviour start in the middle of the night and continue all the next day.

In the evening, I'm supposed to be going to a meeting of a society to which I belong. But I don't go, because I can't be sure that David isn't going to start imagining things again. It used to be "beasts crawling over the bed". These days it's more usually a paranoid fantasy about someone we know, an imagined domestic or financial circumstance, or me.

In fact, this evening he's being over-compliant. When I ask him what he wants for dinner, he says, "Anything you fancy". When I ask him how he would like to spend the evening, he says, "You decide". But it is not always like that. Sometimes nothing I say or do pleases him and he accuses me of being selfish, a liar and a cheat. One day he told the police that I'd stolen all his money. He hasn't got any money to steal!

Our life is good in patches. So far there are more good patches than bad ones. Knowing that David cannot help his actions somehow makes me love him all the more. But there are days when I feel so weary that I just sit down and cry. My solution is to think back to the days when we were first together, when he was able-bodied, when he was bright, cheerful, amusing, never in a distressed state of confusion, the "normal" life we led and all the happy times we had.

Now I just have to accept the fact that LBD is striking him down at a much younger age than it does most people. I must not allow myself to regard David having "young on-set LBD" as an insurmountable tragedy, or something dramatic in our lives. But I do sometimes have to give myself a jolt and remind myself that I am his life partner, his lover, not only his carer.

David can be sanguine about it, too, and sometimes says, "There are a lot of people in the world in a worse state of health than I." He is basically a very caring man and is often moved by the plight of the sick or injured, particularly children, the elderly and animals, he sees on TV.

Being a gay couple has caused no problems with anyone in the medical profession we've encountered recently. I'm thankful for that, because years ago, before David came into my life, I did have a homophobic GP whose practice I soon left. Also, I was once barrier-nursed and treated like a proverbial leper in a hospital while having minor surgery simply because I'd listed my gay partner as my next of kin on the admission and operation consent forms. I knew I was HIV-negative, but the doctors and nurses only began to treat me like a human being again once I'd consented to an HIV test and the result was negative. I was livid that there was an assumption that all homosexual people presented a public health risk.

But not being a legal entity as far as the Benefits Agency, our local authority, and other public bodies are concerned has created difficulties. To them, we are two single men. On a number of occasions I have had to seek advice from the Carers National Association, our local Carers Association, and an organisation called Crossroads which offers advice to carers of people with mental difficulties. At one and the same time I am David's lover, partner, housemate, landlord, registered carer and Motability chauffeur!

For the past 18 months I have been battling with our local authority to obtain Council Tax Benefit because of our low income. Even letters from our MP have failed to convince it of our entitlement. And I didn't know whether to laugh or cry when I received a letter one April from the Invalid Care Allowance Unit saying that it would cease paying me unless I could comply with an impossible demand to produce within two weeks audited accounts to the end of May that same year!

The muddle and inefficiency of publicly accountable departments causes me no end of aggravation, endless form-filling, letter-writing and 'phone calls. But even that is not so stressful as the uncertainty of what state of mind David will be in day by day.

We read a lot about the rights of women, children, the elderly, the disabled, single parents, ethnic minorities, asylum seekers and other disadvantaged groups. I am a supporter of all those. Every so often, campaigners draw our attention to the rights of homosexuals and I avidly support them. But the fact is that, in most aspects of citizenry, the law does not recognise two people of the same sex, who co-habit (and who may have been together monogamously for even longer than their heterosexual parents!) as a couple.

There are gay and gay-friendly churches which will perform "marriage" rites and, more important to me personally, the Gay and Lesbian Humanist Association, to which I belong, which provides celebrants for non-religious commitment ceremonies for gays and lesbians (and also for namings and funerals, incidentally). But these "weddings" are not recognised in law. Until such time as they are, gay carers (of either sex) and those they care for will have an uphill struggle to obtain the services and benefits which are more readily available to heterosexuals and to be equably treated by governments and all the public service bodies that radiate from them.

It is ironic that David and I can have a joint supermarket loyalty card, but that when we asked Social Services to install a grab-rail in the shower, they had to seek my permission as his "landlord". I most sincerely hope that a disabled wife does not have to put her husband down as her "landlord"!

We have just begun the 21st century. A lot of human rights battles were won in the 20th century. (My mother was among the first batch of non-property-owning women to be able to vote.) There is still a lot of legislation to be changed before there is a niche for gay couples in "the system". Sometimes I don't know what to fill in on a form, or what to tell an official or a bureaucrat, because there is little or no recognition that two unmarried people of the same sex can be in exactly the same position as two people of the opposite sex.

I would like to express my gratitude to Signpost editor Simon O'Donovan for allowing me to contribute these thoughts. With good wishes to all carers, sufferers of mental health problems, and caring professionals of whatever sex or sexual orientation,

'Stuart'