Hello All!
I am a 4th year doctoral student at a graduate school in Boston, MA.

I am writing my dissertation on how caregivers of spouses diagnosed with Huntington's Disease cope during the presymptomatic stage of the disease. My goal is to give a voice to a population (i.e. caregivers) that are often overlooked, taken for granted, and/or ignored.

I was wondering what people thought of this dissertation topic and advice you might have for me.

THANKS!!

~Karen

Welcome karen im new here too .But defenitly not new to HD Was caregiver for him for at least 15 years now in care home .Not sure what dissertation is all about .Homework in summer yuk.Why did you choose Huntingtons?

@thehays....

My dissertation is the last thing I need to do in order to graduate from the doctoral program I am in. I chose Huntington's Disease because it captured the essence of what I wanted to study: caregivers waiting for their spouse/loved one to develop symptoms and eventually pass away. How do people cope while waiting for those symptoms to begin? That is what I am trying to study.

This is Marsha posting on Steve's computer.

Of course it is not easy to have your spouse receive a positive diagnosis and then wait for symptoms to start. Nor is it easy to cope with end stage HD, to make sure the person's needs are met, and have to say good bye. But the hardest period is after symptoms start

Twenty-five years ago, a sociologist named Rosabeth Moss Kanter wrote an article for the Harvard Business Review about what she called power failure. It was about first line supervisors, most of whom have an enormous amount of responsibility but are not given the corresponding authority to carry it out. Since I am a sociologist who was teaching at a business college at the time, I incorporated her ideas into one of my classes and so it has stuck with me.

Caregivers of people with HD also suffer from power failure. We want to do a good job of caregiving plus we often have to balance the needs of others such as minor children living in the household or perhaps a dependent parent or in-law and most of us have to work to make ends meet. However, we do not have the tools to carry out our roles. Often we see symptoms that need treating such as irritability, inflexibility, and anger outbursts, but our loved ones may not see them as symptoms and blame us or the children for being irritating. If they won't go to the doctor or if they do go and instruct the doctor not to speak with us, then there's nothing we can do to make them go or be involved even though we know they'd be happier on medication. If we see poor judgment, we cannot get guardianship because the person isn't a danger to self and others. It is common for Phds to overspend, even taking the family into bankruptcy. And then when they are a danger to self and others, there are no placement options. Nursing homes won't take them because they are physically abled and there are no long term psychiatric placements any more. Many caregivers wind up having to use the criminal justice system because that is the only system that WILL respond when families are unsafe.

And psychologically, even though you love the person and WANT to take care of them, it is very hard to be resented and even hated because you are exercising a caregiving role. That is common too although it doesn't apply to everyone with HD. It is difficult not to try to reason with someone who is not being reasonable. You may know that it's not going to work but you keep thinking, if I just show him that..... if I just explain slowly.....if I go over this again.... then maybe he'll understand and you try and try and 9 times out of 10 it doesn't work but once in a while you can reach them so you keep trying and getting frustrated most of the time. And finally, there is an insidious process of dysfunctionality where the entire household revolves around the person with HD. You get so tired of hours or days long tirades and rages and petty meannesses that occur when your loved one doesn't get his or her way that you give in and give in until there is nothing left of who you used to be, until you have no time to yourself any more, and all your friends are gone and the needs of other household members go by the wayside as well.

Marsha

Well done Marsha. My hardest problem was the length of time (in years) a phD required care from at first simple things to total dependency 24/7

Great piece, Marsha. In business a good manager can fix this by decree and coaching, if they recognize power failure in their supervisors. It's easier in the military. One is taught that if you have the responsibility to accomplish something, you have the authoriity to do it unless otherwise directed. Most wars are fought by small unit leaders (supervisors) acting independently of their senior officers (managers).

It's not so easy in the HD world.

I think I remember that author. I used to subscribe to HBR.

Will
HBS '74

I think you can also state it's a state of Mourning to be a caregiver. You morn for your future, that is now not as fun and lively as you had imagined. You Morn for the death of your past, where your husband/son was healthy and isn't now.

OMG Marsha you said it all ,just reading it made my axiety level go up.Sure you werent in our house Well done

Before he was diagnosed my husband that is ,i was prewarned by family and Doctors all about HD but never really saw it as real,no computers to peak into ,never saw a person with HD not even his father till daughter was born.But i do remember thinking and the first i thought of when each child was born was who did they look like believed if they looked like me they were safe.And besides by the time they could get the disease they'll have cure ,mostly denial was working .But i can honestly say i cannot remember one single day were i have not had an HD free day in the back of my mind.Now watching differently as my 3kids who are not tested yet ,nor are they showing any symptoms but this time HD and I are head to head there'll be no denial.

Karen,

I suggest you take your browser and on the top topic page, find that there are 254 pages. Go back to #254 and read forward. Every question that you could ask has been answered several times.