HD Blog

While my husband has not yet had the leg cramps and contractions, he is in his 18th year of HD and still doesn't accept that he has it.

Denial, as most caregivers know, is a common symptom.

Actually, about 6 or 7 years ago I decided to just drop the subject, as there was nothing to be gained by that time.

No sense fighting a battle you won't win.

I'd finally established a routine with medications that were working and I (key word: I) just compromised and/or adjusted to everything else.

'Compromise' and 'Adjust' are two of the best tools for effectively coping with the situations caregivers face.

However, in the earlier years there would have been much to gain, not the least of which would have been his cooperation with medications and treatments. He raged and carried on and was often violent.

This is often hidden in the HD community but physical, emotional, and mental abuse is fairly common (and treatable with medications).

Everything was my fault, or our sons. There were some pretty tough and pretty scary times.

Very common when not on medication. I've heard so many people talk about virtually identical experiences. The person with HD really can believe they are 'normal' and their spouse is 'wrong'.

Without going into the grim details, let me say I can well relate to what you are going through. I'm sorry that you are in this position. I think these kinds of behaviors and the denial are about the toughest things to deal with in this disease.

Very true. This is very hard on loved ones, especially spouses.

For starters, (he) clearly needs medication intervention. At the least he needs, perhaps, an anti-psychotic.

I know we live in an age where we tend to take a pill for everything, but medication really is needed in these circumstances. The chemistry in the brain is thrown off and these medications help bring it back to more normal levels. It gives the person with HD (and their family) a degree of normalcy. Studies are even indicating that anti-depressants may help protect the brain against Huntington's Disease.

A good doctor, preferably familiar with HD, will help you through that. ... (doctors can refer you for OT, PT, Speech/Swallowing evaluations and therapies don't forget)

An doctor with active experience with HD makes all the difference in the world. This will make world a world of difference in the quality of care.

I have a few suggestions, from my experience, about other things you can do. I believe that, when faced with such extremes of behavior and symptoms, we have to seek extreme solutions.... devious methods, and whatever works.

Too often caregivers don't do what is best for the patient because of misplaced guilt. If it's in the best interest of the patient you're probably doing the right thing.

Now, without knowing a lot about (him) some of this may not be helpful for your circumstance but here are a few of the things I did with Charlie.

This is great advice...

I lied when necessary... I didn't tell him why we were going to the doctor.

This isn't even a lie. So much of the grief that comes from caregiving goes away when the caregiver learns that sometimes it is best not to provide alternatives or advance notice. Many times a 'matter of fact' statement is accepted without thought, especially if it is said in an ordinary manner.

I would make light of it saying it was a regular checkup, an annual physical, or to check on his ingrown toenail, for example -

Doesn't even have to be a lie, just don't provide the information that makes them uncomfortable. It's less stressful for them.

but I made certain to write out all my concerns for the doctor, in advance, and to instruct the doctor which things could be discussed in front of Charlie.

An experienced doctor is used to working this way. Again, this is a great way to minimize the stress on the patient while giving the doctor the information they need to know.

So, first you have to find the right doctor and maybe have a private appointment with him in advance of him seeing (your spouse).

Visiting in advance is a great suggestion but it is rarely done.

You have to have the full cooperation of the doctor so do some interviewing and don't be afraid to "fire" someone who doesn't get it. I did that a few times too.

Great, great advice. Be willing to fire any medical person who isn't doing the job. There are good one's out there. This is too important to just accept poor medical care.

When Charlie said he didn't have HD and didn't need medication, I said "fine" and gave them to him anyway.

This is where 'guilt' works against the caregiver and the patient. The medications are a critical element care of the patient. And they may also allow you to keep your sanity!

I didn't tell him the truth about what kind of pill I was giving him (for all he knew it was a vitamin)

Again, why distress the person if it isn't necessary. This isn't being 'dishonest' this is being 'caring' and doing what is best for them.

Sometimes I even dissolved or crushed them and put them in his food - the mayonnaise on his sandwich, or in a bite of oatmeal, soup, or applesauce. To make sure he got the bite with the meds in it, I'd put it on a spoon and say, "Here taste this. Is it _______ enough?"

Note: she didn't say "Would you like to try this?" which would probably get a "no". She just went ahead and did it. This technique works in so many circumstances.

There were times with his temper and raging that it worked for me to just put my foot down! When he was in that state there was no reasoning.

The temper and anger have nothing to do with reason and everything to do with biological factors. Trying to reason in these circumstances is futile. It'll just escalate the situation.

He would get out of control, like a little child, and so I would respond like I would to a child. "Screaming is NOT ok!!! You may not scream! Now, sit here and watch TV and calm down!" He would look so surprised at my sternness
that down in his recliner he would plop, and then I would help him find a tv program to watch. It didn't work all the time but when it did, it was such a relief.

Every situation is unique, find what works for you. Note how she didn't provide options, she just stated the way it was going to be. As I've said before, this technique can be effectively used in many circumstances.

But, honestly, the right medications made ALL the difference!!!!

So many caregivers are afraid of medicating their spouses/loved ones. Get over it! It's in the best interest of the person trying to deal with Huntington's Disease.

The thing I want to reiterate is that there almost always is something that can be done, though it isn't easy always to figure out what. What is the alternative, after all?

There are ways and there are people who have been there before you. Support groups (online and in-person) are a great resource for the caregiver.

I'd like to add one thing here:

You, the caregiver, MUST be taken care of first. If you do not take care of yourself then you will be unable to take care of your loved one. Keep a hobby, find ways to continue to do things you enjoy, get help, listen to music, drive, do whatever it takes to keep your sanity. Like on an airplane: Put on your air mask before putting on the air mask....(you know the rest).