This is shaping up to be an awful death (vent)

[Anonymous]

It’s awful that euthanasia isn’t allowed in most of America. My mom had to suffer even when there was no hope for survival. And all I could do was sit there watch and ask for more morphine for her.

[Anonymous]

Does he have music in his room?

[Anonymous]

OP, you're an amazing daughter. I'm also an only child and facing a similar situation, and I really admire the strength and love you are showing right now. I'm sure your father appreciates it too but isn't able to express it right now. Lots of good ideas on this thread, but don't feel the need to make a big change - as others have said, dying is terrible, and it sounds like you're doing everything you can. Hugs.

[Anonymous]

Anonymous wrote:I'm sorry, OP. It is so hard. My dad had a terrible last few months with delirium and dementia brought on by end stage Parkinsons. He called me multiple times a day in total distress and it was horrifying. He got in the habit of calling me at 9:30 at night, just as I got into bed to read after exhausting days. I had to stop taking his calls then, as terrible as that was, because if I did I wouldn't be able to get to sleep.

Remember this: we are not how we die. We are how we LIVE. The measure of your dad's life is the full scope of it, not this terrible bad moment (in the broad scope of things) at the end.

Dying is rotten, uncomfortable, lonely, and frightening for most of us - inherently, even if everything is done right. Until the last months my dad had my mom lovingly caring for him, daily aids, his kids and grandkids...and he was in psychic pain. No one could do his dying for him, and so he had to face it in all it's loneliness and emptiness. You can't die for your dad, either. He has to go through this.

Hug him, hold his hand, play his favorite music. When things got bad I started reading poetry to my dad, either in person or over the phone. Mary Oliver was a favorite.

Sending wishes for comfort and peace to you, OP. You are going through a very hard time. Be kind and good to yourself.

Thank you so much. I love the suggestion of Mary Oliver. He's always liked her work.

[Anonymous]

Honestly, it would be shocking if he wasn't miserable. He's in pain, sick, and dying. It doesn't mean the facility or you are doing anything wrong. It would be great if death could be peaceful and dignified for everyone, but that is so rare. It's often messy and brutal.

I know it's hard to see your parent suffer, but remember that he had a long (hopefully) happy life. That isn't negated by the ugliness of the last few months. Go easy on yourself; you're doing your best.

[Anonymous]

Anonymous wrote:OP I’m so sorry.

You can’t get this right or fix it. It’s just horrible. It’s a horrible thing.

Just do the best you can by him and keep moving forward through it. You’re not trying to keep him alive, you’re just holding his hand through this bad period.

Remember that the measure of a life is not a good death. You don’t get scored on the last days, you get scores on all the days.

The things that made him tenacious and independent may be making it harder now, or maybe he just drew the bad straw of end of life. It’s okay for it to be awful and suck, it’s okay for you to not be able to fix it for him, it’s okay to be relieved when it’s over, and it’s okay to start grieving before the actual death.

You’re doing the best you can. One foot in front of the other. You’ll both get there.

+1, this is well said. Go easy on yourself OP.

[Anonymous]

BTDT with my MIL OP. I am sorry. You are not alone, please know that you are not alone in suffering. I know this is just DCUM and an internet board, but I see you, I know your pain.

[Anonymous]

OP, it sounds like a medical/hospice professional upthread is giving good advice on pain and anxiety medications and you should absolutely advocate for those.

As horrible as it is, one option he has to hasten his death and end his suffering is VSED -- voluntarily stopping eating and drinking. It would be much better if he were in a medical aid in dying state but he isn't. VSED is legal everywhere. He has the right to stop eating and drinking if he's ready to die. It doesn't mean it's easy physically and he needs the facility's support to do it, but it hastens the end.

https://www.compassionandchoices.org/our-issues/vsed

I'm so sorry you're facing this reality with your dad, and I hope it is over for his sake, and yours, soon. No one should have to live (or die) like this.

[Anonymous]

There is a great book that explains everything that is wrong with eldercare and dealing with decline that comes during the last phase of life - Being Mortal.
It explains that nursing homes/assisted living facilities/hospice are basically prisons that institutionalize the person. Everything is done according to a schedule with safety, not happiness or life satisfaction as the number one criteria. It takes away all personal freedom, autonomy and satisfaction from life. There is nothing left to live for.

[Anonymous]

OP, I’m really sorry you’re dealing with this. I’ve been there (twice) and it’s so hard.

I hope prior suggestions about med adjustments have been helpful. You’re a good daughter, please take care of yourself.

[Anonymous]

OP here. Thank you so much to everyone on this thread for your suggestions, and for being so kind. The guilt is the hardest part.

[Anonymous]

Anonymous wrote:OP, it sounds like a medical/hospice professional upthread is giving good advice on pain and anxiety medications and you should absolutely advocate for those.

As horrible as it is, one option he has to hasten his death and end his suffering is VSED -- voluntarily stopping eating and drinking. It would be much better if he were in a medical aid in dying state but he isn't. VSED is legal everywhere. He has the right to stop eating and drinking if he's ready to die. It doesn't mean it's easy physically and he needs the facility's support to do it, but it hastens the end.

https://www.compassionandchoices.org/our-issues/vsed

I'm so sorry you're facing this reality with your dad, and I hope it is over for his sake, and yours, soon. No one should have to live (or die) like this.

Wow we treat our pets better than this. This whole thread makes my heart hurt. How can I be a hospice volunteer? Peace to you, OP.

[Anonymous]

Anonymous wrote:OP here. Thank you so much to everyone on this thread for your suggestions, and for being so kind. The guilt is the hardest part.

It’s human nature to feel guilt, but that doesn’t mean it’s justified. You’re doing the best you can. The things that are making him miserable aren’t things you’ve done to him or failed to do for him. He’s miserable because he’s dying and he knows it, but he can’t control it. Loss of control will make you miserable.

Hugs.

[Anonymous]

I am so, so sorry!! I think in this case therapeutic lies are considered fine. If he asks to go home, maybe you can say not today because they are fixing something, or whatever. Will he remember your excuse the next day?

I will say after watching my father decline over many years and have a gruesome last few weeks of misery, I was so at leave and relieved when he was gone. I loved him. I knew he didn't want to be alive anymore because even though he could no longer talk, he tried to unhook everything and made angry noises when they hooked him back up. He was no longer suffering and could in my mind go see see all the loved ones he had lost.

Can they give him anything to make him more comfortable-anti anxiety, anti pain, etc? Maybe adjust the dose if he already gets that?

Thinking of you OP. It's very hard to watch a parent suffer. Just know your presence brings some comfort.

[Anonymous]

Anonymous wrote:Does he have music in his room?

One thing I learned, my mom (in hospice, mostly unconscious) hated the music I thought she would like (Gregorian chant, relaxing) .. she wanted something uplifting. Music is great for everyone.