Caring for someone with HD when you have HD

Double slap: How do you cope when you are caring for someone with Huntington’s Disease and you have it as well?  The turmoil of seeing someone you love deteriorate right before your eyes and knowing that you have this coming in your future.  How does that dig into your head and your outlook on life?

My experience is with the “beginning of the bad” stage of caring for my father.  There was a time when he had conjured up this fantasy of idolizing me and my sister as his “trophy women”.  He wanted to exercise with us to watch us.  He wanted to be out with us alone so he could have his opportunity to proposition us.  HD did that to him and I have forgiven him completely.  However, looking back to when he was un-medicated and out of control, I often think of when I am “so gone” that I can’t even control my feelings towards my own child.  I know that I love my son Logan more than anything in the entire world.  But will I ever mistake my motherly affections for some feeling that is totally and completely wrong?  Will I ever attempt to French kiss my own son?  This terrifies me and has definitely fucked with my head.

I know that people will say, you can’t think that way.  There are so many new advancements in science coming to help with these issues…but I say…I still worry.  It’s natural.  I love my son so much that I am willing to do whatever it takes to save him from my future self.  It took a while to get over this fear.

As far as the physical changes, having someone to care for that is a potential sample of your future…always staring you in the face…it can be quite exhausting.  For a short period of time when I was working out of my home, I would take care of my father during the day while my mom was at work.  He would sit in my office and just watch me work.  So here’s two people with HD…my dad’s ruminating about how much he loves me…and I’m ruminating about how much I think he’s lost his mind and that I might be losing my own mind.  It was a vicious circle.  And his movements!  They were the worst.  It was a constant distraction and always made me feel anxious.  I started getting little phantom twitches in my height of anxiety.  I also lost a lot of sleep because I knew what had to be done.

I finally had to plead with my mom to find him other day care plans.  That was hardest thing to do because I love my parents so dearly.  But it comes down to what had to be done to get my head straight again.  Sometimes you just have to break yourself away from being part of the care team.

Let’s take a moment to give a “shout out” to my mom Janet.  She’s been the primary care provider for my father for these past 10 years of “Hell”.  She has had to endure the pain and embarrassment of his mental episodes…imagine how you would feel if your spouse tried to French kiss your children.  My mom is an angel.  She still cares for him in as loving a way as if nothing happened!  God bless her. How it is that she never left him is only in God’s understanding.

So with an attempt to help this magnificent woman, I have found ways to cope while I am caring for my father.  These are some benefits I have found that help me get through the hard times:

  1. If you have mild symptoms of Huntington’s Disease, you have a unique understanding of what is going on in the head of someone that is unable to communicate every well. This makes you invaluable to the overall care of your loved one.
    1. My mom would often wonder why my dad was so fidgety or why he would just stand there and hover over her while she was doing the dishes. I had an opportunity to be my dad’s voice and explain to her that he was unsure of how to initiate a project or a conversation. I explained the benefits of using positive direction instead of yelling at him or nagging him. She found that after a while he didn’t hover so much. He was also happier and healthier.
  2. You can face your fears head-on.
    1. Seeing it head-on over and over gives you an opportunity to build up a natural protective numbness to the intensity of how sad this disease is. It is important to give yourself a break from time to time.
  3. You have an opportunity to educate yourself on ways to creatively adapt to your own changes.
    1. My dad is 66 and can’t climb stairs. My husband and I moved our bedroom downstairs so I can start getting acclimated to a safer environment.
    2. I see how medications and stress effects my dad. I can use his experience as a learning tool for myself.
  4. You have a unique connection with your loved one that can be very strong.
    1. Sometimes I tell my dad “I understand you daddy, like no one else.” He just smiles and nods. His eyes glimmer with little tears. We both understand each other without even having to share words most if the time. This feels really good.
  5. Helping in the care makes you feel really good about yourself.
    1. Feeling good about your involvement in caring for your family is very beneficial to your own mental health.
  6. As a team you can help educate others.
    1. I often take my dad to my speaking engagements to the medical community. He is the perfect example of what Huntington’s Disease looks like. Often is it a great way to show “the before and after”….me as exhibit A (the healthy business professional who will one day have serious problems) and dad as exhibit B (obviously HD afflicted). This gives my dad an opportunity to help me educate. And he always tells me if he’s in the mood…I respect his privacy. He has given me permission to share his story as much as possible in order to educate everyone on what HD really is.
  7. You can be a role model to your HD-afflicted loved one.
    1. My dad is so proud of my accomplishments and my strength. As I can be an example to him to get up and be the best I can be every day, he is inspired to stay healthy for as long as he can. We made a pact that we want to be cured together.

Wishing you all strength and health,

Mackenzie

Staying in the Workplace when you have HD: Find a Mentor

One of the recommendations that I give people when they have Huntington’s Disease and they would like to stay in their career for a long time is to find themselves a reliable mentor.  A mentor is a guide who can help the mentee to find the right direction and who can help them to develop solutions to career and communication issues.

Benefits of having a mentor include having:

  • an insider’s perspective on navigating your career
  • someone to bounce ideas off
  • a champion to cheer you on
  • someone to hold you accountable
  • receive critical feedback
  • exposure to diverse perspectives and experiences
  • someone to provide you with impartial advice
  • someone to boost your career prospects and growth
  • someone who has greater knowledge of career success factors
  • someone to help you to succeed if you do the work
  • access to your mentor’s network of contacts
  • insight to real-world experiences
  • a chance to learn specific skills and knowledge that are relevant to professional goals
  • increased capacity to translate values and strategies into productive actions
  • increased self-awareness and self-discipline
  • someone who may be able to help mediate in heated discussions

Where to start?  Maybe your company has a mentoring program?  Ask you HR director if they have such a program.  If they don’t then prepare a few examples of people within the company that you feel may qualify as a good mentor for you.  Request that the HR director talk with these potential candidates and their supervisor in order to determine if they have available time to mentor you.  Of course also keep your supervisor in the loop.

People with HD often have difficulties with time management, multi-tasking, project initiation or completion, memory, and communication.  Explaining to your mentor that having someone who can provide you with additional clear and concise direction will help you succeed in accomplishing your company’s objectives.  It will also provide additional support to your supervisor if they are not able to provide you with such direction.

“Reverse mentoring” or having someone “lower on the totem pole” mentor you may also be an effective strategy.  You would be surprised at the great advice and direction they may be able to provide.  They may have a new and unique perspective on situations and projects that may be very beneficial.

Meeting with your mentor should be fairly regularly such as twice a week or monthly.  Keep the meetings professional.  Spending too much of their time talking about your social life could hinder the overall objective of keeping you work-worthy and on-task.  It could also cause your HR manager to request that you end the mentoring relationship.  The meeting should be no longer than an hour.  Sometimes meeting at lunch, the gym or on the basketball court is helpful too.

Eventually consider becoming a mentor sometime in your career.  I feel that this gives me the opportunity to share my knowledge and expertise while I am still able to communicate.  It makes me feel valuable and confident.  It also helps me look at myself objectively.  If I am providing advice on good business practice, I better be following it myself.

Benefits of Being a Mentor

  • Satisfaction knowing that you are helping someone to achieve their professional goals.
  • Affirmation of professional competence.
  • Opportunity to build your leadership and management skills.
  • Opportunity to give back to your industry.
  • Opportunity to build an enduring career network.
  • Gain insights and different perspectives from future members of your profession.

My father owned a dental laboratory.  Towards the end of his career, he had alienated all of his colleagues and employees.  He had no one to work with except for his clients.  He work alone in a big laboratory…no one to talk to…no one to bounce ideas off of.  This is when he experienced the deterioration in his ability to see reason.  He conjured up the most absurd ideas and then ruminated on them.  And no one was there to stifle this strange development.  He got worse.  Then his dementia boiled over to where he took his anxiety, anger, and inappropriate thoughts out into the real world where he could harm people.

He’s better now but I want people to understand that there are ways to prevent these types of scenarios from happening.  You can keep your cool and stay in the workplace for a very long time.  Having a mentor can only help you as the disease progresses.

Thank you all for the wonderful comments!  Keep them coming!  Share my blog and please stay positive and hopeful.  We will all get through this together.

Love,

Mackenzie

Dealing with Anosognosia

Anosognosia, I don’t have it…or do I?

I remember talking with my father one day about how his twin brother was dealing with the symptoms of Huntington’s Disease.  My dad looked me in the eye and said “Your uncle says that he doesn’t have it.  He said he believes the Lord has healed him from Huntington’s Disease.”  I remembered sitting in silence for a moment.  “Dad you mean that he’s not going to see a doctor?”  He just shrugged.  I thought to myself how nerve-racking that must have been for my aunt.  My father was in his early 60s and had severe enough symptoms where he could not drive a car and he was having other psychotic episodes where he was not able to function in society without taking some medication to keep him stable.  The rumor was that my uncle was having the same type of symptoms.

I couldn’t understand how he could just ignore the uncontrolled movements.  How stumbling and falling all the time hadn’t made him stop to think about the cause.  I have strong religious faith and feel that sometimes we can be miraculously healed…but this time I felt like he was ignoring the facts.  And I felt that he was putting others in danger. Yes, yes.  “Respect others wishes to not know”….this is what I would repeat to myself whenever we got together at family functions.  How could I hold my tongue?  I love my uncle like he was my own father…he does look exactly like him.

Finally, one year at the national HDSA convention I attended a presentation on the symptoms of Huntington’s Disease.  One of the symptoms was called Anosognosia.  What?  This term describes a deficit of self-awareness.  Otherwise, a condition in which a person who suffers a certain disability seems unaware of the existence of his or her disability. Whoa.  It took me a few times of practicing to pronounce it correctly.

I finally could understand that sometimes people who have HD don’t even know that they have it.  This seems weird to me because I am someone who is kind of preoccupied with appearances.  I check the mirror at least 10 times a day.  I check at least three times that I haven’t tucked my skirt into my underwear. How could someone live without knowing they have a disability when it is so apparent?

I also wonder if people who are around me notice symptoms that I don’t.  I am not the type of girl to ignore such symptoms but if I don’t even know that I have them…then what?  I try not to over-think the progression of my disease but sometimes it sits on my mind for a little.

Does it help to have someone tell you?  If you have chorea and you don’t even notice it, what good does it do to know?   I suppose if I am putting myself in situations where I could hurt myself or someone else, this would be helpful.  But what if I refuse the information?  I can’t tell you how many times my father would say “Janet, I’m fine!  Leave me alone!”  What if I become this difficult?

As the years progressed, luckily my uncle came to terms with his condition.  Eventually you have no choice.  But it still worries me that there are others out there that may live in this darkness and not know any better.  They may not have anyone in their lives to monitor them.

I would love to hear from others if they have had issues with anosognosia either with themselves or family members.  Please share how you cope.

Best Wishes,

Mackenzie

Effective Communication with your Employer and Co-workers when you have Huntington’s Disease

Let’s face it, in today’s society we are all still suffering from post-partum-economy-crash-oh-my-god-I’m-gonna-lose-my-job-fears from the early 2000(s).  Some of us still have nightmares from when we were laid off from large down-sizing initiatives.  I worked in the mortgage industry…it crashed hard and I felt the pain…twice.  I was laid off 2 times.  But I was able to learn from this experience and learn to develop better “best practices” for communication and increased job performance.  I still fear getting laid off …every day.

Now, add on an additional layer of fear…how do I tell my employer that I have Huntington’s Disease and not make them subconsciously “freak out”.  How do I build a trust with my employer and let them know that I am committed to doing my part to stay healthy and productive?

With the GINA Act (Genetic Information Nondiscrimination Act – in the US), we are protected from being laid off because of our genetic information. But how do you explain the scenarios that arise when your symptoms are causing inappropriate or incapable side-affects that may otherwise have you fired?

Think about the following:

If I can’t focus long enough to sit in a 3 hour meeting, how does that make my colleagues feel?

If I am making inappropriate sexual remarks (just to be funny) at the wrong place and time, how does that affect my surrounding co-workers?

If my boss notices that I can’t complete projects on time, what kind of difficult position is he/she put in?

If I can’t hold a scalpel steady when I am performing brain surgery, how is that going to hinder the outcome of my patient’s recovery?

These are some difficult questions and this is a very touchy subject with many people.  But here I go…I’m gonna lay it all out on the line.

If you are diagnosed with having a higher than normal CAG repeat or you are at risk, you are responsible for the way you manage your career, your symptoms, and for the education of those who will have to work with you.

You are still allowed to have a career.  You are still allowed to have goals and continue your education.

You are responsible for educating your employer and co-workers on Huntington’s Disease when the time is right.

There’s no way around it.  You can’t expect people to just know what it is or what you are struggling with.  You also have to understand that there is a limit to what an employer can have you do in the work place if you are struggling.  But the way in which you communicate and show your genuine desire to continue to work for your employer will better your chances of continued employment.

So how do you know when the time is right?

  1. If people approach you on something you did or said that made them feel uncomfortable and if this happens more frequently than just normal everyday bullshit office politics.
  2. If your job performance review reflects comments that show that you are struggling in areas where you never had problems before.
  3. If you are put on a probation period or you are demoted, you might have waited too long. This is especially true if you haven’t taken the effort to communicate and educate.
  4. If you are sleeping on the job or constantly late for work.

How do I conjure up the strength to tell them?

What do you have to be ashamed of?  You are a genetic anomaly.   You are special.  All right, I’m being a little silly.  However, you should be able to look someone in the eye and say “I have a higher than normal CAG repeat and am at risk for developing Huntington’s Disease.  What that means for our working relationship is…”

This is all situational because everyone is unique but this is what I might tell my employer at my stage of the game:

I have a hard time multi-tasking

I have a hard time staying focused

My balance is not great

My memory is poor

I have a hard time communicating or finding the right words to say

I get antsy sometimes in meetings

My driving privileges will be revoked at some point in time

**please note that a job interview is not the right place to share HD info unless you have chorea**

The key to your discussions and the source of your strength should not be in the explanation of the symptoms of Huntington’s Disease but instead of how you handle or intend to handle these symptoms.  This is where you build trust between you and your employer.  You also have to be very genuine.  Don’t fake it.  For example, I would say “I have a hard time multitasking.  I have worked with my doctors to be placed on helpful medication and I feel that I am performing quite well.  I am always open to feedback and am willing to do whatever it takes to get back on track again.”  If you “fake it” or don’t really intend to follow through with what you are saying, your performance will show it…your employer will comment on it and after a number of times you will finally lose that trust.

How do you incorporate a “stay in the workplace for as long as I can” maintenance plan?

Politely request job performance reviews or something similar.  Some employers do not have a formal review process but you can ask them to give you periodic feedback of how you are doing.  A quick email sometimes is just fine.  Once or twice a year.  Your employer will appreciate your ability to take constructive criticism.

Share your job performance reviews with your doctor or care support…therapist, clergy etc.  This gives them the opportunity help you tweak your healthcare plan.

Follow through and document.  This is very important.  This is important for proof that you are trying to work through your symptoms.  Most importantly this is necessary when trying to qualify for long term disability/social security benefits.

Be proactive and knowledgeable of what may happen to someone with Huntington’s Disease.  This way symptoms won’t take you by surprise and it will be easier to cope with them.

Share ways in which your employer can help you adjust your environment so that you are safe and productive (adequate lighting/desk free of clutter/minimal distractions/move to first floor workspace).

How do I educate them on Huntington’s Disease?

Some people take information best in small doses.  Just don’t jam the info down their throat.  This may take a few months…a few years even.  It is also important to show them where they can get “the correct” information.  Whether it be on-line through HDSA or another quality organization…make sure that they are not shooting through YouTube videos watching somber images of people really badly afflicted.  This could send the wrong message.  You can suggest that they attend an HD educational event.  You can suggest that someone you trust come out to speak with them.  Don’t be upset if they decline your offer, however be upfront with them that you think your working relationship will be strengthened if they have a good understanding of what the disease is.  I personally had my boss attend a Celebration of Hope Gala where I was presenting.  I think it really impressed her and was a great way to show her the wonderful things we were doing to help find a cure.

How do I ensure them that I am not just using HD as an excuse?

My passionate and genuine communication with my employer has been the best route for me.  If you are noticing that your employer is complaining over and over again about something that you are constantly saying “well I struggle because of my HD”.  There is a problem here.  Either they are not listening to you and have not taken this responsibility off your plate or you are not being real with them.  You are not doing your part to manage your symptoms and have instead just relied on “the excuse”.  This puts a negative strain on your professional relationships and can end very badly for you.

What if I get “shut down”?

Sometimes people can be assholes.  I’m sorry but sometimes you have to face the facts that not everyone will be willing to work with you.  I suggest that ultimately, you build some kind of relationship up with your co-workers/employer. You will be the best person to judge whether or not they will handle the news well.  You never know though until you try.  Compassion comes from the most unexpected places.

How do I cope when I really have to step down?

I’m frightened of this part.  I don’t know how I will feel when I am told “Mackenzie, we just can’t have you doing what you’re doing.  You’re making too many mistakes and it’s affecting the organization in a bad way.”  I have nightmares about this at night.  The last thing I want is to be “the heavy”.  I do know that I’ve built a lot of wonderful relationships at work through many different departments.  I am hoping that they will have a fit for me throughout my various “Stages”.  My method of coping will be that I know that I did what I could to stay healthy and productive for as long as possible.

Thank you for reading.  It’s my peers that keep me going…especially when I have to write about really hard topics.  I know that we are all in this together.

All my best,

Mackenzie