My daughter is 39 years ol; CAG 47; mid stage. She has not signed an advanced directive or health care proxy. She is eating enough to keep a bird alive. She has dropped from a size 8 to a 2. She takes no medication - refuses to see her Dr. She wants to "die in peace". Is it her decision?

No Edina, it's not her decision at this point. If she was late stage, that might be a whole nother story, but at this point she would be considered suicidal and should be hospitalized. She has two young children who im sure love her a lot, and this must be very hard on them too. I'm sure others on here will tell you their experience, and how they got someone on meds that didnt want them. I am sure that once she is on the right meds, she will feel so much better, and want to live.

This is so very sad & difficult to see as a mother. It may not have to be her decision, but honestly....from one mother to another (I have recently lost my daughter). I would let her go in peace. If that is what she has told you she wants to do, then let it be her choice.
I took my daughters choice away because I panicked at the fear of loosing her & I was not ready to do so. I made things worse for her for longer & in the end, there was nothing I could do to stop HD from happening anyway. I feel guilty for that.
Ask yourself, if you would feel you made the best decision for her if she did suffer for a long time. I'm sorry to answer you so honestly, if it upsets you, but I really don't want to know that anyone goes down the road I have recently been & know I did nothing to offer advice or help.

I wish you & your daughter the very best.
Myrna
x

Im sorry for what your going through. However I am at the starting stages of HD and one of the only calming factors in my mind is that I can control what I eat and drink. I think she has a right to make her own decisions also.

Edina, Are the children safe and OK? Is their father there? I know, as her mother, you are very concerned.If you are spitiual, yopu may want to pray aboput it. If you see a therapist, you may want to talk to the therapist about the situation. This must be very painful for you as her mother. Are the children seeing a therapist? How old are the children? It might be helpful for you to consult with a therapist awho is familiar with HD. I think you could use some professional support and guidance with your decisions about your daughter. You are in my thoughts and prayers.

yzrabbit, i have hd too, and am in very early stages. Yes, i am very strong about being in control too, but only to the point when i am no longer making good choices. And Myrna too, she is not late stage like, she is only mid stage, and has a lot of VERY good years left. At this point it is not a matter of letting them go. At this point, she is not making good judgement, and someone has to intervene. I think it would be criminal not to. She is obviously not having good judgement right now, is very depressed, and needs some help.

I am hoping that someone here can help show Edina what her legal options are for getting her daughter into the hospital for help.



Edited 3 time(s). Last edit at 01/16/2008 08:49PM by Barb.

I have to respectfully disagree with Barb on this one.

I think that an adult who has not been found to be of unsound mind should have the right to choose on this issue.

It's simply incorrect that someone wishing to "die in peace" is "obviously not showing good judgement". My judgement is quite good.

I decided decades ago that I wanted to "die in peace", rather than to be subjected to a nursing home, and related indignities.

It's a personal decision. I understand that a lot of people have a problem with it. That's why I've been quite open with my family about what my wishes are.

Sometimes love means letting go - and honoring your loved-one's wishes. No matter how hard that might be........



Edited 1 time(s). Last edit at 01/16/2008 10:11PM by JL.

I'm going to agree with Barb and disagree with JL on this one. We all know that neurotransmitters are affected by the HD gene with the result that depression is a very common symptom. I don't think anyone can make good decisions for themselves when they are depressed as a result of biochemical changes in their brain.

That is my point too Marsha. I know how you feel about things for yourself Jl, and you have made your decision over time, that when things are too much for you, you might take matters into your own hands, but that is a decision that you have made when not in the depths of depression, and i do understand and respect your decision a lot. My concern here, is first, she is not in late stages of hd, she has two children, 12 and 13, who are watching her slowly waste away, and i don't think it is fair to the children. I think if she really wanted to take her life, she would do it quickly with an overdose, but she hasnt. She is clearly very very depressed, and not thinking clearly, and i am sure that if she was put on the right meds she would be very glad to have some good years left with her children.

I too have to agree with Barb. There is no harm in getting this girl on meds that will allow her to think straight. If after proper treatment she feels the same way than maybe you can consider her decision. At a minimum there is no need to rush along her decision.

I want to take back what I have said, not realising that there was young children involved. They are not at an age to go through this now.
I do agree if this is depression it could be helped if your daughter will take medications. Is it possible to talk to the doctor on her behalf?
Maybe you could find a way to hide depression meds in her food or something if she still refuses to take them.
If you can get her on them, them you can re-evaluate how she feels after she has received some help. I am sorry.

Edina, what does her ex think of what she is doing? And what does he think of the children being in this environment and watching her do this? Has anyone phoned her family doc to tell him what is going on? Has anyone considered an ultimatum to her, that she has to get help or the kids can't live with her?

Well, actually - after re-reading the post, I would agree ENTIRELY that anti-depressant meds should be tried, first. They can be very effective. They have been for me.

I quite agree one should always question decisions made IN THE MIDST of depression. I made my decisions far in advance of that.

Still, I think that HDs are put at a definite disadvantage in terms of opting for death-with-dignity. Unless, like me, they've faced that issue far prior to becoming symptomatic - when will they ever have the opportunity?

The predominance of HDs have depression. So if depression is used as the sole criteria for adjudging mental competency (for making health and end-of-life decisions) - then PHDs are doubly-damned. Not able to live a tolerable life - yet, unable to choose to end it.

Who decides whether that person has the mental competence to make that choice.

Only medical professionals, in my opinion. I ALWAYS advise people to seek medical advice. And to further ask the physician about anti-depressants. And to take them, if perscribed.

I've used Prozac, Zoloft and Lexapro.

I've found them quite useful.........

Sorry if in my zeal over death-with-dignity rights - I gave the impression that I was advocating that as a first-line-of-defense. Nothing could be further from the truth.

I always recommend that other solutions be tried first.

Thank you all for your thoughts and suggestions. Although X and children still live in the same house they have distanced themselves from her and built a wall. She will not admit depression or take any medication. I am in the process of trying to get her to see her HD Dr. In the past I have given ultimatiums and been barred from her home.

When my brother decided to "starve himself to death" my other brother wanted to respect this wish, but starving yourself can take a long time and be very bad. People in the same house might be blamed for not taking care of the person. For this reason my brother took my HD brother to the hospital where he was put on meds and went into a nursing home where his suffering was prolonged for three or four years. What is the answer? I don't know, but in your case, since there are children in the house, I guess you would have to call in med and police aid to get her to hospital if she continures to refuse. It wuold be very hard for children to grow up knowing that they didn't do anything to save their mom (even if it does prolong her suffering to do so).

Care givers have a responsibility to care give. Making sure a sick person eats properly fits the definition pretty well. A person slowly starving out of depression is not dieing with dignity either. It's just sad. Sorry jl that a mid stage person and their decision making is in question but it always is. They may also decide to put solar panels on their house at the expense of a child going to college. They may think they drive fine when they don't. A doctor decides competency after a family member suspects it. Edina, you either get her to the doctor or contact the doctor and see if hospitalization in a psych ward can be arranged so that proper medication can be administered. This is a definite suicide attempt. In the end it may be successful but do what you can to prevent it. She is going to get too sick to refuse treatment soon. She will be admitted to the hospital anyway. She could get too sick to recover. It's not a good way to go. So feel no guilt in intervening before that point. She is definitely altered now and not thinking clearly.

Eric! As you well know, the inability to eat adequately has more to do with the inability to swallow - not depression.

You say: "It's not a good way to go. So feel no guilt in intervening before that point."

I agree with the first part. I disagree with the last. Especially if it's against her wishes.

Those "intervening" often don't face the same tortures that the PHD does.

Edina,
I would have to agree with Alice. I was extreamly young when my mom started coming down with HD and I have and still do have some regrets of not taking care of my mom or not knowing what to do because i was a little kid. I think if someone would have stepped in and helped her and us as children would have be of great help. I think you should get her some help no matter what it takes.. I hope everything goes well and I will keep you and your family in my prayers........Violet

I didn't hear anything about eating difficulties.. I did hear "let me die in peace" tho. There is always more guilt for what you don't do than what you do do. Sorry jl...this a a caregiver issue...and you don't seem to consider them right now or the children either. It's about a balance of wishes and wants... and what is best for all concerned...not only a pHD who may be depressed and may only wish to die only because of a chemical imbalance that is easily corrected. Teresa felt suicidal until she went on prozac and the issue was all gone after that... I completely ignored that request at that time and have no guilt at all for it. You would have had her dead...8 years ago. There have been lots of ups and downs over that time...but she had way too many happy and proud moments she would have missed. All because I made the call and not her. As far as tortures... many of those tortures are only from our viewpoint and not theirs. For instance severe chorea may be hard to watch... but the pHD isn't even aware of it... no torture there. Teresa has been im the NH for 2.5 yrs...she has no concept of time tho. Ask her how long she has resided there and she says "not too long". A lot of projection goes on with HD by everyone else.

I say treat her mother guilt free if she can. It's not about rights... it's about treatment and proper care now. If this was about advanced directives, feeding tubes, and all that then wishes should be observed. Spur of the moment decisions by someone who is compromised in their thinking and is possibly correctable should be treated.

Eric, you make this out to be some "us against them" issue. It is not.

I grew up in an HD family. I have seen both sides.

The fact is that many PHDs are caregivers, as well.