dying with dignity

[smoochiegal]

Honestly, I wish that Ontario would allow dying with dignity. My sweet man is so done. He cried and cried yesterday. Saying he is defeated, and just wants it to be over. It is heartbreaking.
He can swallow only sometimes, on a good day, I get 1 boost shake into him and maybe 5 or 6 bites of soup. He does not want a feeding tube. So what, Does he just have to slowly starve to death? I am so angry, scared, heart broken and done.
I don't know what to do or say.
I don't want to talk to people, but I am angry when they don't call or come.
I want to be alone and yet with people.
I want him to be able to choose when and how to die, but I don't want him to go yet.
I want life to be normal again, but then I remember that there will never be normal again as he will not be here with me.
I am so .... I don't even know... I guess broken.

 

[Nikki J]

I am so terribly sorry. Do you have hospice? It sounds like you both need it. For emotional support and medication.
I wish I could make it better for you

 

[smoochiegal]

We do have hospice and he's is on pallitive care.
It's so @&*^ing brutal.

 

[csabados]

I am so sorry. I can genuinely feel your pain. I am not there yet with my mom, but I know it is coming and the anticipatory grief is unbelievable difficult. I can't imagine anything worse than watching them suffer. I hope hospice is helping with heavy medications and I hope you have the support to get you through. Hospice will generally keep them medicated sufficiently. All you have to do is ask.

While my mom is still driving some and is mobile, she has Bulbar onset and has more difficulty with swallowing and breathing and getting more tired. She has almost completely lost her speech. She wants nothing to do with any medications, treatments, trials, equipment and it is very hard to watch. She refuses to slow down and rest. She wants nothing more than for it to be over when I know she has a lot left in her. I hate to say "giving up" because I cannot imagine what I would do but she's not ready yet. I live in Oregon and we have Death with Dignity. She lives in California. I am willing to support her in that move but not just because she can't talk or is in a wheel chair or can't drive. It has to be a combination of things. I signed up to keep her off a ventilator and out of pain and she is just not there yet.

I hope you both are at peace in your final time together. Those of us left behind will get over it, but we will need to get through it and move on. We make memories all our lives to get us through when we need them.

 

[MaxEidswick]

>he is defeated, and just wants it to be over. It is heartbreaking

wishing I had answers. thinking of you both :-(

 

[amysgarden]

We have that available here in WA state, and although my husband has only just been diagnosed, he is going to his doctor next week to see if she will be open to prescribing it when it is time. A friend of mine that does hospice said she has been in attendance for a few of the "physician assisted suicide" deaths. Patients get medication prescribed but the have to be able to take it themselves. She said it was very peaceful, no agonal breathing, just calm sleep.

I am not sure when or if my husband would use it, but to have it would mean one tiny piece of power in a disease where all power is taken away.

I am sorry you are going though all of this and I am very sorry your loved one is feeling so hopeless. My thoughts and prayers are with you.

Amy

 

[Nuts]

Oh Sweetie, my heart breaks for both of you. It shouldn't be like that--what is the point? Can he have more meds to relax him--relieve pain and anxiety? If he's crying, then he's anxious, and perhaps they can up his dose? I wish I could reach out and do ANYTHING for you.

 

[gooseberry]

I don't know how to help from so far other than to be here to listen and offer a hug.

I am so very sorry you both are feeling defeated. I hope you are able to find some peace. steph

 

[Jeanau]

I'm so sorry for what you both are going through. ALS is a hideous disease!

 

[lgelb]

Smooch & all,

As Diane noted previously, whatever "death with dignity" laws your area does or doesn't have, it is *not* illegal to titrate morphine to the patient's comfort. You might search previous threads on this topic. To do so isn't practicing medicine, and it's not something that you need to delegate since the "professional" for providing your PALS comfort care is you. If/as third parties impede your ability to do that, you have the right to 1) ask them to stand down 2) tell them to take a walk.

Smooch, your dear husband still swallows. You have the right to administer his morphine as you and he see fit. A prescription bottle in his name, as is obtainable from a physician you know if not hospice, by expressly specifying that your husband is in severe distress [e.g. from swallowing difficulty] that is not being relieved by his current regimen, is your possession and responsibility. If/when medications are too much to swallow, of course there are injections. For someone who is eating/drinking little, morphine has a strong effect.

I understand your not wanting to lose him, but at the end of life, as caregivers, the best death possible is the last and best care we can provide. As you said, it is his choice, so you both should know, and you can make sure, that if/when he makes it (and perhaps he already has), you will be able to help.

 

[Atsugi]

With this post, I'm not advocating one way or the other, but I want to help inform you of some relevant facts.

For Canadians who wish to DWD: contact the DWD people in Canada.

Some news items that are relevant.

FEB. 6, 2015
OTTAWA — The Supreme Court of Canada on Friday struck down laws banning physician-assisted suicide for patients with “grievous and irremediable” medical conditions.

According to the DyingWithDignity <dot> CA website, "The ban on physician assisted dying will be in force for 12 more months."

THAT SAID: Suicide is still legal. The DyingWithDignity people can help in several ways. "If you are eligible for our support and you still wish to hasten your death after learning of all of your choices, we make sure you have the information to do so peacefully and effectively. If you wish, we can also be with you at your bedside when you die. Call 1.844.395.3640"

Most life insurance policies have a suicide clause. Usually they state that they will not pay if suicide occurs within 2 years of buying the policy. But if suicide occurs after two years of buying the policy, they will pay.

Yes, Cheryl, this is a brutal disease. I helped my wife through it, and I'm proud we did our best to make her passing as painless as possible. Believe it or not, life for our family has returned to normal after some months passed. There is life after ALS.

You will get through this. We all do. Even if it doesn't seem like it now, you still have happy years ahead of you.

 

[affected]

Cheryl, I need to add to this.

Not legal here in Australia either, and my Chris did not want anything like that.

BUT when he reached the end and he knew he was on the way out I used Oxynorm (which is similar to morphine) and Clonazepam drops.

I was alone at home with him for the 4 days. I stopped giving him any feeds on the second day, and just gave him the meds as he seemed to need them. I had constant phone support from palliative care and they assured me constantly I was doing brilliantly. The trick is to stop pain or fear from starting. Palliative care advised me on dosage rates that were designed, not to end his life but to keep him comfortable.

I went on gut instinct - sometimes gave him one or the other of the meds, sometimes both together and I kept him totally peaceful and calm and yet he was lucid. He already couldn't talk so we didn't have conversations but he knew where he was and what was happening.

When I got our best home care worker to come say goodbye to him on the last day, he knew she should not have been there. That told me clearly that he was not bombed out stupid by the meds, but was at a great level. No pain, no fear, just dying with dignity.

His passing was so peaceful.

I read Mike's stories of Krissy several times leading up and during that time and kept my thoughts focused on Chris's comfort and dignity and I achieved that perfectly.

Please let us know how you are doing and if you have made headway in getting the help from palliative care to do what they know how to do so well - keep him comfortable. It will keep you calm and you will care for him well then too.

The whole family here held my hand all the way through. I would hold your hand now too.

Lots of small doses frequently. Clonazepam is brilliant for stopping the fear and anxiety.

 

[zoohouse]

Cheryl I am sorry that it has to be so difficult. Please talk to your doctor about medications that can make this process easier. Know that you both will be in my prayers.
Paulette

 

[Gembead]

Sitting here with tears in my eyes knowing one day I will be in your shoes, with all your pain and fears.
Reaching out to hold your hand, and sending hugs. Will keep you both in my prayers.
Love Gem

 

[JimInVA]

I am SO thinking of you both. You are not alone...

Jim