Dying is something that nobody really wants to think about, let alone talk about. While some of us are looking forward to the opportunity to meet with Jesus, it is still hard to leave our family behind. And, if you are the one left behind to carry on without the person in your life, it is even harder to think about it. Unfortunately, there are many times we need to think about dying. Even if we do not think it is going to happen for many years to come. God may decide that your work on earth is done tomorrow and take steps to call you home. You just never know. That is why I think it is a good idea to take some steps to prepare yourself for that day, today. It may still be 20 years down the road, but still...
The progression of Huntington's Disease is not pretty. It may start slow and may not seem so bad in the beginning, but as the disease does it damage on the body, it will continue to become much worse and traumatic for not only the person affected but the caregivers, too. For some, such as Robert's mother, losing the ability to swallow is a strong possibility. Cheryl had problems swallowing and often choked when eating causing many other complications. So, a feeding tube was inserted into her stomach to help her obtain the necessary nutrition she needed. She lived for nearly four years with that feeding tube. It was only when her uncontrollable movements caused it to be ripped out and her body could not handle the necessary surgery to replace it that the tube and IV were removed and she left us.
The question is whether you want to live or die that way. Do you want to be kept alive by a feeding tube? When the feeding tube was first inserted into Cheryl, the family was told to be prepared for her to last about six months or so. She surpassed that expectation by a mile. So, a feeding tube could very well keep you alive for many years to come, if that is what you want.
What about if your heart stops in the middle of a procedure? Do you want the doctors to take the necessary steps to resuscitate you and bring you back to life if they can? Do you want them to use paddles that send electric shocks to your heart in an effort to make it beat again?
What about life support? Do you want to be kept alive by machines if your brain stops functioning?
What type of medical procedures do you want doctors to perform to keep you alive if you are unable to say what they are?
These are some very important questions that should be considered by anybody, not just a person that is affected with a disease such as Huntington's Disease. That is why it is extremely important for a person to establish a living will or advance directive of how you want to live or die as the case may be.
Robert can tell me all day long that he does not want to have feeding tube inserted, he does not want to have to survive on an IV, breathing machine or any other type of medical device. He figures that if God allows one of the necessary processes such as eating to not work properly, it is his time to go. And, he expects me to accept that and make sure no extraordinary measures are taken to keep him alive. While I may not necessarily like it, I respect his wishes and will not allow these measures to be taken to prolong his life. However, as we learned in the case of Terri Schiavo from several years ago, it is extremely important to have these directives detailed long before the time comes. That way, regardless of differing opinions of parents, children and spouses, your desires and wishes for how you live and die are clearly documented so they can not be disputed. While you may have talked about it with your spouse, that does not mean that other people in your family will believe that is what you really want.
Advance directives can involve many different things:
- A living will - a legal, written documents that details what type of medical treatment or other life-sustaining procedures you wish to have or not have. It is important to be detailed and specific about exactly what types you want done.
- Medical Power of Attorney - a document that designates the person you want to make all medical decision for you. This is useful when family members disagree with what should be done.
- DNR (Do Not Resuscitate) Order - dictates that you do not want CPR preformed if you stop breathing or your heart stops beating.
- You might even decide that you do want the doctors to attempt to resuscitate you but you do not want to live on a ventilator forever or only for a specified period of time. Or you may want CPR performed but do not want the doctor to use a device to shock your heart in hopes of keeping it beating.
- What do you want done with your organs once you die? Donate them to science or to another person?
It is also important to designate a medical power of attorney as well. This designates the person that you wish to make any decisions regarding your care. This also has to be done while you are still competent enough to make the decisions on what you really want. It can be a spouse, a parent, another family member or a friend. It cannot be a doctor, someone employed by the hospital or other care-giving facility. Robert's sister, Debbie wants to make me the person that wants makes all of her medical decisions when she is unable to do so. However, since I am not an immediate family member, unless she fills out the proper paperwork, nobody is going to listen to what I have to say. And, even though all four of her brothers know her wishes, will they be able to respect them when push comes to shove? Robert and I have had lengthy conversations of how he wants to die. But, when it comes down to it, anybody could say that I just made it up for any number of reasons. So, documenting his wishes (or your wishes) becomes extremely important.
There are many different websites out there that can assist you in preparing all of the necessary paperwork. Some of them are free. Some of them are not. However, websites such as CaringInfo.org provide the forms that need to be completed and what steps need to be completed to make sure everything is valid. And as every website says, the information that they (and I) have provided for you should never take the place of real legal advice. I am not a lawyer, but I do understand how important these steps are when it comes to making the decisions that will need to be made concerning Robert, Debbie, Bill and myself in the future. I hope I have giving you some useful information and something to think about, too.
