How to Prepare Your Last Will and Testament With Huntington’s Disease


This article was developed via a partnership with BetterHelp.

If you have recently been diagnosed with Huntington’s disease or you’re caring for someone who has, you know that the disease is eventually fatal. Although some things like lifestyle changes and diet can slow the progression of the condition, it is incurable and progressive.

Dealing with this fact and understanding the inevitable is one of the most difficult parts of having this condition. Many people find themselves having to face it early on while they still can. If this sounds like you, read on to learn how to prepare your last will, testament, and final wishes before your condition progresses.


Completing Your Last Will and Testament

Your will is a legally binding document that you can create at an attorney law office with a licensed estate planning attorney. It will hold all of your wishes for your assets, valuables, remains, funeral, home, and money after you die.

Since Huntington’s Disease can affect judgment, you will want to bring someone along with you to your attorney appointment. This person can be a family member, friend, or even an advocate, nurse, or therapist.

When deciding where your assets should go, allow your attorney to give you their opinion. You may also discuss end-of-life care, which is something unique to progressive illnesses like your own. Since you most likely won’t be able to make decisions in the future, you’ll want to appoint someone to care for you as a guardian and sign your rights to them. Choose someone you trust and know has your best interest at heart.

Even if you do choose an adult guardian, you can note in your will that they can’t take your assets or try to change your will once you are unable to make decisions for yourself.

What Should I Include?

Here are some of the most common things you’ll consider while writing your last will and testament:

  • Who do you want your finances to go to?
  • Do you have pets, and who will care for them?
  • Do you want a DNR signed?
  • Do you wish to be put in hospice or a nursing facility or be cared for in the home?
  • Do you want your funeral to be an open or closed casket?
  • Who do you want to give any property, cars, family heirlooms, and items to?
  • Do you want any of your items or money to be donated to charity?
  • Do you want to be an organ donor for science or medical purposes?
  • How do you want your funeral and burial to be? Do you wish to be cremated?
  • Do you wish to leave behind life insurance/benefits for those in your immediate family?
  • Are there any special requests you have for after your death?

It may seem difficult to think about these things early on, especially since the life expectancy with Huntington’s Disease can be up to 20 years or more. However, you want to get started as early as possible so that you’re truly able to be heard and understood.


Should I Sign a DNR?

You may wonder if you should sign a DNR, which is short for “Do Not Resuscitate.” It is a legal document that allows doctors to not revive you if your heart stops beating or you go unconscious during your time in a medical facility.

You should sign a DNR only if you wish to be allowed to pass if something like this were to happen. If you wish to be revived and continue to live, you do not have to sign this form.

Organizing Your Affairs

Outside of your will, you’ll also want to organize your affairs in your life. You may want to get systems in place to care for yourself before your condition progresses. This step could include setting up a medical room in your home, hiring an assistant, or moving your company over to your child.

You may also want to make donations to charity or give presents to certain people before you forget or are unable to. Consider all of the aspects of your life and where you want them to go. If you are unable to care for your pet for much longer, choose someone to take care of them.

Most importantly, let yourself have time to grieve and feel your emotions about this transition. A therapist can be very helpful to you during this time. You can even meet with one online if you’re not feeling up to leaving home.


Giving Friends and Family Time to Prepare

Huntington’s Disease is difficult for you, and it’s also difficult for those who love you. It’s important to give those you love some time to prepare for the changes to come. Let them know as soon as you can about your diagnosis and what it means for you. Let them know any wishes you have once you become unable to make choices.

You can even set up an agreement with the person to have them care for you in your final years of life or to help manage your finances if you wish to go into hospice care someday. If you are struggling to have conversations about this with people you love, family therapy can help.

Last Wishes

Finally, you want to make it clear what your last wishes are when it comes to the end. Remember to consider:

  • Whether or not you want a DNR
  • Whether you want to die naturally or with an assisted death
  • Who you want close by in your final moments
  • Any final words you want to be said or read
  • Any people you want present in your final days


Considering your end-of-life care and final will when you have Huntington’s Disease is not an easy task. If you want to learn more about this condition and how it might impact you in the coming years, you can read more in this advice column.

Remember that you’re not alone. This time may feel overwhelming and hopeless, but you’re making the right step by thinking of yourself and your family once you’re gone, and it’ll help you feel more at peace and prepared if anything were to happen early on.