Saturday, April 28, 2012
And the battle goes on
I have read the stories of others with HD who are fighting for approval for disability coverage from the Social Security Administration. It is not an easy process at all. Many are denied time and again and some do not even get approval before the die as a result of complications from the disease. So, I don't know why I was surprised that we are still fighting through the process two years later. I guess because it didn't seem to take Debbie any time at all to obtain coverage. Hopefully, that would be the case with Bill. Boy was I ever wrong.
The first time we requested benefits for Bill was early to mid 2010. Yes, 2010. Roughly two years ago! And we are still fighiting. The first request was deneid because he didn't exhibit "symptoms" of the disease. Same reasoning behind the second denial. Of course, given the outdated definition of Huntington's Disease that the Social Secuirty Administration has, it really isn't that surprising. But that is a blog from another day, and one to follow up on in the future. He may not exhibit the jittery uncontrollable movement (or chorea), but he has decreased mental functioning that would be needed for him to hold down a full time job. Reality is that he is unable to work. He needs assistance from Social Security to be able to live and get medications that will help lessen the symptoms and prolong his life. Suddenly, I understand what it is like for all of these people that I have read about. This whole process is emotionally and mentally draining and very frustrating. Especailly when all of us familiar with the disease know what the disease is doing to his body.
Hopefully, that will soon change because we have been given a court date for our third chance at getting approval. On Wednesday, June 28th at approximately 1:30 pm, we will find out if the lawyer that we have hired will earn a paycheck or not. Since he only gets paid if there is a settlement, there is a huge incntive for him to work hard on this case. And I certainly hope he does. I hope he has worked enough to earn a paycheck and gets Bill approval so that he can get on with his life and begin using some of the medications that will help him live with HD.
And maybe by the time we have to begin thinking about Robert filing for disability coverage, it will be a much smoother processs.
Tuesday, March 27, 2012
Denial - The Good and The Bad
A blog of HD (At Risk for HD) that I follow recently published a two part blog on the cycle of denial when it comes to Huntington's Disease and all that is associated with it. In this blog, the author talks about how he began his blog under a psudeonem and wrote it for seven years before he finally revealed his name to a select group of people. But even still, he has not told anybody he works with each day or any friends and neighbors. There is a tendency to want to deny the prescence of the disease because of the stigma that is attached to it. And even now, when he is ready to bring the information to his friends, neighbors and co-workers, his wife doesn't want him to. For the sake of their daughter, she says. That way she doesn't have to face the ramifications of the disease. A side note here is that they already know that she doesn't have the daughter does not have the disease because she was tested in the womb but knows her dad has the disease.
Similar to many other things that we deny, many that are at risk for the disease want to cling to the mentality of "it won't happen to me". Robert is a perfect example of that. When they learned his mother had the disase, he decided just for the heck of it to get tested but was positive that he did not have it. Apparently, he was writing a "book" about his life at the time and thought this would make for a good chapter. I have never seen this book so I don't know if it really exists. But, he was sure that he did not have the disease. Imagine his surprise when the doctor told him not only that he had the disease, but that he had high numbers which could mean he would experience the disease at an early age or that he might have a greater than 50% chance of passing it on to any offspring. Still, at first, he didn't want to beleive he has HD. Even today, there are times that he wants to deny the prescence of the disease. Don't get me wrong, he knows he has it and freely admits it, but he refuses to believe that it will change the way he lives his life. He doesn't want to aknowledge that one day he will end up living a life similar to that of his mother. If he denies it, maybe it will never happen. He keeps canceling his appointments with his neuroligist and the specilist that he has been referred to. He says because the days the appointments are scheduled are not conveinent or something comes up. While in some cases, that is true, he has admitted once or twice there is a bit more to it than that. He is afraid that the doctor will tell him that something has changed or that his brain is beginning to how signs of the disease (or black spots as they are often referred to) or be told that he needs more medication or something.
Then, there is one of his brothers that has never been tested. Of the five siblings, he is the only one that has not been tested. Granted, he is a few years older than Robert and would most be likely showing minor symptoms by now if he did have it, so most likely he doesn't have it. And since he doesn't have any biological children, he doesn't feel the need to be tested. Plus, he has often said that if he did find out, he would probably become a more crazy, daredevil person that didn't care whether he lived or died. Not knowing for him seems to be the better option becuase he can lead a life of ignorance and not knowing.
The author of the above mentioned blog made what I think is a very profound statement in this blog... Families that deal with [HD] naturally and up front are the ones that have the best outcome in the long run. Denial is necessary in life, but when carried to extremes, or used as the main way of dealing with life…. It becomes harmful/pernicious.
Now, in Craig's case, it is probably not denial because he does not seem to be affected by the disease. He is not showing any symptoms when other family memebers younger than him are. We could be way off base and he might very well have the diesease and we just don't know it, but it is highly unlikely at his age.
However, if a person has symptoms - even minor ones - of HD and a family history, they owe it to the rest of the family to find out. Consdier Robert's family. Long before his sister Debbie had. And it wasn't discussed in detail with the family. So, none of the kids really knew what the situation was. It was not until Cheryl was diagnosed with it that the kids began to get tested. Debbie had already had her children. Would she still have had her kids knowing she might pass this diesease on? Nobody can say for sure because she never had the chance to make that type of an informed decesion. And since the state of Texas will not allow somebody to be tested for the disease until they are 18, the possibility of finding out if her 3 sons have it is still a few years off. And his brother Kevin had already had of his 4 kids. Fortunately, Kevin does not have it, but he didn't know he was at risk in the beginning either.
So, when the author of this blog says that his wife doesn't think that he should "come out" about the disease to his family and friends, I have to disagree with that. While I do understand the desire to shelter thir daughter (who is 9) I think it is harmful and dangerous to her and the rest of the family. If a person denies the existence of the disease, they deny themselves the oppurtunity for possible new treatments, the love and support of family and friends as well as the chance to help educate others on this disease that is still not very well known by many that have not in some way been personally affected by it.
Similar to many other things that we deny, many that are at risk for the disease want to cling to the mentality of "it won't happen to me". Robert is a perfect example of that. When they learned his mother had the disase, he decided just for the heck of it to get tested but was positive that he did not have it. Apparently, he was writing a "book" about his life at the time and thought this would make for a good chapter. I have never seen this book so I don't know if it really exists. But, he was sure that he did not have the disease. Imagine his surprise when the doctor told him not only that he had the disease, but that he had high numbers which could mean he would experience the disease at an early age or that he might have a greater than 50% chance of passing it on to any offspring. Still, at first, he didn't want to beleive he has HD. Even today, there are times that he wants to deny the prescence of the disease. Don't get me wrong, he knows he has it and freely admits it, but he refuses to believe that it will change the way he lives his life. He doesn't want to aknowledge that one day he will end up living a life similar to that of his mother. If he denies it, maybe it will never happen. He keeps canceling his appointments with his neuroligist and the specilist that he has been referred to. He says because the days the appointments are scheduled are not conveinent or something comes up. While in some cases, that is true, he has admitted once or twice there is a bit more to it than that. He is afraid that the doctor will tell him that something has changed or that his brain is beginning to how signs of the disease (or black spots as they are often referred to) or be told that he needs more medication or something.
Then, there is one of his brothers that has never been tested. Of the five siblings, he is the only one that has not been tested. Granted, he is a few years older than Robert and would most be likely showing minor symptoms by now if he did have it, so most likely he doesn't have it. And since he doesn't have any biological children, he doesn't feel the need to be tested. Plus, he has often said that if he did find out, he would probably become a more crazy, daredevil person that didn't care whether he lived or died. Not knowing for him seems to be the better option becuase he can lead a life of ignorance and not knowing.
The author of the above mentioned blog made what I think is a very profound statement in this blog... Families that deal with [HD] naturally and up front are the ones that have the best outcome in the long run. Denial is necessary in life, but when carried to extremes, or used as the main way of dealing with life…. It becomes harmful/pernicious.
Now, in Craig's case, it is probably not denial because he does not seem to be affected by the disease. He is not showing any symptoms when other family memebers younger than him are. We could be way off base and he might very well have the diesease and we just don't know it, but it is highly unlikely at his age.
However, if a person has symptoms - even minor ones - of HD and a family history, they owe it to the rest of the family to find out. Consdier Robert's family. Long before his sister Debbie had. And it wasn't discussed in detail with the family. So, none of the kids really knew what the situation was. It was not until Cheryl was diagnosed with it that the kids began to get tested. Debbie had already had her children. Would she still have had her kids knowing she might pass this diesease on? Nobody can say for sure because she never had the chance to make that type of an informed decesion. And since the state of Texas will not allow somebody to be tested for the disease until they are 18, the possibility of finding out if her 3 sons have it is still a few years off. And his brother Kevin had already had of his 4 kids. Fortunately, Kevin does not have it, but he didn't know he was at risk in the beginning either.
So, when the author of this blog says that his wife doesn't think that he should "come out" about the disease to his family and friends, I have to disagree with that. While I do understand the desire to shelter thir daughter (who is 9) I think it is harmful and dangerous to her and the rest of the family. If a person denies the existence of the disease, they deny themselves the oppurtunity for possible new treatments, the love and support of family and friends as well as the chance to help educate others on this disease that is still not very well known by many that have not in some way been personally affected by it.
Monday, January 2, 2012
It is the start of new year. When people make resolutions that they might or might not stick to. It is also a good time to think about getting some things in order such as finances or maybe preparing wills. My goal this year is to work with my husband to create a living will for each of us so that when our time comes, we know that it will be handled the way we want it to be.
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.
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.
Tuesday, December 20, 2011
Merry Christmas!
Last year, Robert and I sent a gift to his brothers, sister, aunt, uncle and grandmother in hopes of bringing them a bit of comfort and peace as we all struggled to find joy in the first Christmas after loosing his mother, Cheryl, only a couple of months before. This year, I want to share it with all of you. For those of you who have recently lost a loved one, I hope this brings you some peace and comfort. It is a beautiful poem and ornament that come as a boxed set.
This year as we s a special place on our tree this year as we pause to remember Cheryl and many others that have gone on to spend Christmas in Heaven this year.
MERRY CHRISTMAS FROM HEAVEN
I still hear the songs
I still see the lights
I still feel your love
I still hear the songs
I still see the lights
I still feel your love
on cold wintry nights
I still share your hopes
and all of your cares
I'll even remind you
to please say your prayers
I just want to tell you
you still make me proud
You stand head and shoulders
above all the crowd
Keep trying each moment to stay in His grace
I came here before you
to help set your place
You don't have to be
perfect all of the time
He forgives you the slip
If you continue the climb
To my family and friends
please be thankful today
I'm still close beside you
In a new special way
I love you all dearly
now don't shed a tear
Cause I'm spending my
Christmas with Jesus this year
Copyright 1990 John Wm. Mooney. Jr.
I still share your hopes
and all of your cares
I'll even remind you
to please say your prayers
I just want to tell you
you still make me proud
You stand head and shoulders
above all the crowd
Keep trying each moment to stay in His grace
I came here before you
to help set your place
You don't have to be
perfect all of the time
He forgives you the slip
If you continue the climb
To my family and friends
please be thankful today
I'm still close beside you
In a new special way
I love you all dearly
now don't shed a tear
Cause I'm spending my
Christmas with Jesus this year
Copyright 1990 John Wm. Mooney. Jr.
If you are interested in purchasing one for a friend are loved one, we purchased them at Holy Grounds Gift Shop in Grapevine but you can also find them online, too. Simply google Merry Christmas from Heaven.
This year as we s a special place on our tree this year as we pause to remember Cheryl and many others that have gone on to spend Christmas in Heaven this year.
Friday, November 11, 2011
"I Want You To Help Me Die"
Wow!!! I am spending a day working on some homework and catching up on my DVR. I was 7 episodes behind on Private Practice so I am just now see the episode that was in part a follow up to the one that I talked about a few months earlier. Part of the story was about whether or not the character should get tested for HD after her mother passed away from the disease. Private Practice Episode
The friend (Michelle) of Amelia's that was diagonosed with HD in this previous episode has just come back from a 6 month vacation in Italy. She has begun to exhibit tremors and even a few seizures. Michelle has returned from Italy and told Amelia "I want you to help me die." I will let you make your own choices on how you feel about that statement but I will share my thoughts with you, too.
Robert has often joked that when he can no longer take care of himself and do the simple things like getting dressed or using the restroom on his own, he wants me to shoot him. While he does make jokes about it, there is an underlying point to this statement. He spent time having to change is mother when she could no longer do it herself and he hated every minute of it. He doesn't want to have to put me or anyone else through it. It is in part due to his own sense of dignity but also that part of him that does not want to be dependent on anybody else for his own personal well being. So, there is a bit of seriousness behind his jokes. I get that. I know my husband and how he thinks and I also know how he feels about relying on someone else to take care of him. He hates it even now when I try to take care of him in some way when he can do it himself.
But, help him die? I don't think so! To me, that is playing God. And last I checked, I am not God and I have no desire to play that role. I fully believe that God has a plan and a time table for how all of this is going to work out. It isn't up to me or Robert or Michelle or Amelia to circumvent God's plan. And trying to do so can seriously backfire.
Amelia agrees to help Michelle die. She begins a cocktail of three drugs - a barbiturate that relaxes the body, a paralytic that suppress the body's many different systems and finally a potassium solution that essentially stops the heart and kills the person. When Amelia injects the barbiturate, he causes Michelle to have trouble breathing. Instead of continuing with the process, she tells Amelia to stop and that she doesn't want to die anymore. Not like that, anyway. So, she is rushed to the hospital and survives. Then, a few nights later, Amelia comes home to find Michelle dead after she overdosed on Oxycontin or something.
I have so many emotions swirling inside me after watching this episode. In a lot of ways, it seems to me that she took the chicken's way out of it all. Instead of having to deal with the life that God has given her for whatever reason and she is throwing it back in His face. She chose to do it on her terms instead of His. On the other hand, I can sort of sympathize with her. I can only imagine what it is like to have to live with that diagnosis and the many symptoms that are associated with it. Having seen what Robert's mother went through and what caring for her did to him and his brothers, I can see how some people might not want to wish that on their loved ones. But does that make it right?
When a person makes the decision to be tested for HD, they are required to undergo counseling - both genetic and psychological - as part of the process. The reason is because of the emotional side effects that come with the diagnosis. Whether positive or negative, there is an emotional roller coaster that is associated with the diagnosis. Both episodes of Private Practice do a very good job at showcasing the roller coaster ride.. But seeking counseling was not mentioned. Maybe it should have been.
But, still, that doesn't make what she did okay. Yes, the disease is brutal. Not only on the person living with the disease but those who have to care for that person, too. However, suicide is not the solution. And when it comes time, I will not be able to help Robert do it. I will respect his wishes for the DNR and no feeding tube or any other type of life extending measures. I will not be responsible for playing God though and removing Robert from this earth before it is his time.
And while I do thank Private Practice for shedding light on the emotional turmoil that a person must go through, I think they took the easy way out. Michelle was in the beginning stages of the disease and still had a lot of life ahead of her. Yes, she had tremors and they were still there when with medication, but they were not as bad as they were without medication. She could still talk, walk, eat and generally take care of herself. It was the beginning of the symptoms. Instead of living with the disease and surviving, she decided to make a decision that was not really up to her. She used her own timetable and played God. She ended her life before it was over and left behind a swarm of people that were hurt because she left them.
Suicide is not the answer. While the disease is hard for everyone involved - the diagnosed and the caregivers - we have to rely on God to work it out on His terms. And besides, with the many advancements in medications to treat the symptoms and the testing that is being done every single day, there could be a cure for this disease tomorrow. Do you want to end your life today knowing that tomorrow might be the day that could have saved it and allowed you to live a normal life?
If you want to see the episode, here is the link to it. Private Practice - I want you to help me die.
The friend (Michelle) of Amelia's that was diagonosed with HD in this previous episode has just come back from a 6 month vacation in Italy. She has begun to exhibit tremors and even a few seizures. Michelle has returned from Italy and told Amelia "I want you to help me die." I will let you make your own choices on how you feel about that statement but I will share my thoughts with you, too.
Robert has often joked that when he can no longer take care of himself and do the simple things like getting dressed or using the restroom on his own, he wants me to shoot him. While he does make jokes about it, there is an underlying point to this statement. He spent time having to change is mother when she could no longer do it herself and he hated every minute of it. He doesn't want to have to put me or anyone else through it. It is in part due to his own sense of dignity but also that part of him that does not want to be dependent on anybody else for his own personal well being. So, there is a bit of seriousness behind his jokes. I get that. I know my husband and how he thinks and I also know how he feels about relying on someone else to take care of him. He hates it even now when I try to take care of him in some way when he can do it himself.
But, help him die? I don't think so! To me, that is playing God. And last I checked, I am not God and I have no desire to play that role. I fully believe that God has a plan and a time table for how all of this is going to work out. It isn't up to me or Robert or Michelle or Amelia to circumvent God's plan. And trying to do so can seriously backfire.
Amelia agrees to help Michelle die. She begins a cocktail of three drugs - a barbiturate that relaxes the body, a paralytic that suppress the body's many different systems and finally a potassium solution that essentially stops the heart and kills the person. When Amelia injects the barbiturate, he causes Michelle to have trouble breathing. Instead of continuing with the process, she tells Amelia to stop and that she doesn't want to die anymore. Not like that, anyway. So, she is rushed to the hospital and survives. Then, a few nights later, Amelia comes home to find Michelle dead after she overdosed on Oxycontin or something.
I have so many emotions swirling inside me after watching this episode. In a lot of ways, it seems to me that she took the chicken's way out of it all. Instead of having to deal with the life that God has given her for whatever reason and she is throwing it back in His face. She chose to do it on her terms instead of His. On the other hand, I can sort of sympathize with her. I can only imagine what it is like to have to live with that diagnosis and the many symptoms that are associated with it. Having seen what Robert's mother went through and what caring for her did to him and his brothers, I can see how some people might not want to wish that on their loved ones. But does that make it right?
When a person makes the decision to be tested for HD, they are required to undergo counseling - both genetic and psychological - as part of the process. The reason is because of the emotional side effects that come with the diagnosis. Whether positive or negative, there is an emotional roller coaster that is associated with the diagnosis. Both episodes of Private Practice do a very good job at showcasing the roller coaster ride.. But seeking counseling was not mentioned. Maybe it should have been.
But, still, that doesn't make what she did okay. Yes, the disease is brutal. Not only on the person living with the disease but those who have to care for that person, too. However, suicide is not the solution. And when it comes time, I will not be able to help Robert do it. I will respect his wishes for the DNR and no feeding tube or any other type of life extending measures. I will not be responsible for playing God though and removing Robert from this earth before it is his time.
And while I do thank Private Practice for shedding light on the emotional turmoil that a person must go through, I think they took the easy way out. Michelle was in the beginning stages of the disease and still had a lot of life ahead of her. Yes, she had tremors and they were still there when with medication, but they were not as bad as they were without medication. She could still talk, walk, eat and generally take care of herself. It was the beginning of the symptoms. Instead of living with the disease and surviving, she decided to make a decision that was not really up to her. She used her own timetable and played God. She ended her life before it was over and left behind a swarm of people that were hurt because she left them.
Suicide is not the answer. While the disease is hard for everyone involved - the diagnosed and the caregivers - we have to rely on God to work it out on His terms. And besides, with the many advancements in medications to treat the symptoms and the testing that is being done every single day, there could be a cure for this disease tomorrow. Do you want to end your life today knowing that tomorrow might be the day that could have saved it and allowed you to live a normal life?
If you want to see the episode, here is the link to it. Private Practice - I want you to help me die.
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