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Points for Reflection

1. It is important to be mindful that each of the family members in this story will have differing health and social care needs that are likely to vary over time. In addition, the needs of the family members may conflict. 2. Brenda is coping with the many mental, physical and financial issues that are associated with being a primary carer. What potential threats do you perceive to her health and wellbeing?

Activities

1. If you were part of the primary care team caring for this family, how might you help to ensure the childrenís needs were addressed in this situation.

2. Think about this manís social needs. What services are available in your local area to support him?

3. For a detailed and powerful account of the impact this condition can have; the uncertainties around whether to have the genetic test and the effect on family dynamics, read Julia Madgenís story ďNeeding it like thisĒ. In: Marteau T, Richards M (eds) The troubled helix Cambridge University Press,Cambridge, p7-22

Quotes

ďMy first reaction was one of great sympathy, which rapidly changed to one of immense anger. We had done nothing wrong, especially our children but they each stood a 50/50 chance of inheriting the gene that would rob them slowly of their mind. I also felt like a complete fraud. I thought we were an ordinary family but this had been there all of the time, waiting to come out. We had always been a HD family but just didnít know it.Ē

ďMy husband must be unbelievably lonely.Ē

Further information

The Huntington Disease Association: http://www.hda.org.uk/

UK National Library for Health, Genetic Conditions Specialist Library website - Huntington disease briefing.

US National Library of Medicine, Genetics Home Reference - Huntington disease.

Information on public services.For information on ĎDisabled Facilities Grantí


Location: The Stories
Transcript

You can download the full transcript here

Brendaís story: Supporting a diagnosis of Huntington disease
The realities of coping with a husbandís dominantly inherited condition

This is very difficult to put into a short story as so much happened long before my husbandís diagnosis, years and years of crud in fact.

In reality, things had been brewing for near enough twenty years, I suppose we just chose to ignore it in the hope that things would get better and we would eventually enjoy a normal happy life.

Well, they didnít. Crunch time came about two weeks after I discovered that he was having an affair. That in itself shook my world to its foundations but it did give me the strength to suggest he go and see a doctor. He had been dropping things fairly regularly, his cigarettes, his coffee, car keys etc. As for his temper, what can I say, that was the reason I hadnít mentioned it before. He would have bitten my head off. But now he couldnít hurt me more than he had in the last couple of weeks, so when he tripped on the stairs for not the first time, I grasped the nettle and made the suggestion. To my utter amazement, he agreed without a fight.

The initial diagnosis came roughly two weeks later. It had to be confirmed with a DNA test but the neurologist that his GP sent him to, recognised it as soon as he entered his room: Huntington disease.

The affair paled into insignificance, this was far darker and too immense to get my head round.

My husband was adopted at just a few weeks old. It had never entered my head that there could be something there that would have such a devastating effect on him and possibly our four children. They were 13, 12, 8 and 4 years at the time. My first reaction was one of great sympathy, which rapidly changed to one of immense anger. We had done nothing wrong, especially our children but they each stood a 50/50 chance of inheriting the gene that would rob them slowly of their mind. I also felt like a complete fraud. I thought we were an ordinary family but this had been there all of the time, waiting to come out. We had always been a HD family but just didnít know it.

The only reassuring part of all this was that it explained everything. His selfishness, his crass comments, his foul temper, all things that I had adjusted to over the years but that had still deeply hurt me all the same. It also explained how we had got so much in debt. With several years of progressively impaired judgement and a desire to have what he wanted, our finances were scary. My husband did nothing else around the house, so I was happy to leave the finances to him, blissfully unaware of the mess we were getting into.

Seven years on, things are pretty dire. He had to leave work within a year of the diagnosis, just before he was 43. The children were told almost straight away about their fatherís condition and the implications for them. It was almost a relief to give a reason for his odd and angry behaviour. We never knew what kind of mood he would be in Ė anything and everything set him off. He would throw the nearest objects to hand at the wall at the drop of a hat. It was like walking on eggshells all the time. The children soon stopped bringing friends round so the house became lifeless. Friends of mine stopped calling, as they just didnít know how to take him. His friends, people he had worked with for years, disappeared off the face of the earth. They can still be spotted now and again darting into shops to avoid me. When I am in a cantankerous mood, I stalk them so I can watch them panic when I trap them between display stands. I have to get my kicks somehow.

My husband refused any medication, which might have helped us as much as him by calming his temper. About 5-6 years in, he accepted medication for his movements, which were unbelievably bad. The medication had no effect on the movements but his specialist assured me that it was probably the cause of his temper reducing. He sleeps till well after lunch these days, so I have a part time job to help protect my sanity. He finds it hard to swallow so every meal has to be chosen carefully. He has trouble getting to the toilet in time. Imagine that mess crossed with an extreme movement disorder.

My husband must be unbelievably lonely. I know he is often unable to initiate conversation himself but when someone continuously shows no interest in anything you have to say, it is hard to keep a flow going. It is often a relief to go and cut the grass, or do the ironing, just to get out of the room.

Naturally, I am incredibly lonely myself and desperately miss a reassuring arm around my shoulders, or that little conversation that gives you a boost when things are getting you down. I wake up in the morning feeling exhausted and thatís how the day goes on. It is like being on a treadmill; there is always something that needs doing.

There is little any one can do to help. I donít expect anyone to come and wipe his backside for him; Iím there to do that. Practical help would be most welcome. I would love someone to do the garden for me, or check the car over. ďEmploy a gardenerĒ I hear you say. I am almost £40,000 in debt, I canít afford to employ anyone or do anything. He needs a level access bathroom on the ground floor. I applied for a grant from the local council. Because of our income, they estimated that I could theoretically raise a loan of £59, 622 (I donít know how they work it out), which is well in excess of the likely cost of the work needing done, so they canít help. Fortunately, we were both in the RAF, so SAAFA is hopefully going to step in and help.

The only good thing that has come out of this is that it has made me a strong person, but what a huge price we have all paid for it.

Update Ė June 2007

After a year of my husband precariously navigating our stairs and nothing happening to help the situation, one of the professionals suggested I write an angry letter asking why we couldnít get any help. At the same time SSAFA contacted my MP and we all had a meeting. As a result of us all pushing in the same direction, we finally have a bathroom downstairs.

I now feel that we are noticed by Social Care Services but only because there is such a strong physical impairment. While he was causing all sorts of problems with his mental state, and probably doing our children far more harm, no one listened to us or offered any help. I was just told to increase my antidepressants.

My husband is now in a wheelchair, wears incontinence pads and has to be spoon-fed soft food like a baby. He rarely looses his temper, probably because there is no personality left to irritate. Carers come in to help twice a day. Like the bathroom adaptation, this is paid for by Social Care Services.

None of our children, now 23, 21, 17 and 14 are showing any obvious signs of having inherited the gene change. I have reduced our debt a little as I now have full control of everything. I am still incredibly lonely.