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

[Anonymous]

Hey OP, just checking in

[Anonymous]

Thinking of you, OP. I’ve BTDT with my father and I know how draining it is. Wishing you and your Dad peace and comfort.

[Anonymous]

Anonymous wrote:Hey OP, just checking in

Still here! Nothing has changed, although hospice did agree to change his little dose of Ativan to twice daily. Hoping it will help....Thanks again for how kind everyone's been.

[Anonymous]

I have been there OP, so my deepest sympathies on what you're going through. You've gotten tons of great advice here. I just want to add my two cents.

Unequivocally, you are doing an amazing job. You are taking extraordinary care of your father. While also taking care of your children. That takes unbelievable skills and resources. It also takes a huge toll on you.

The single most important thing in caring for someone else (regardless of age, circumstance, or anyone's personal wishes) is safety. It's always safety first. You are ensuring that your father is safe and that is huge. Just huge. Especially huge given his physical realities. Especially huge given the financial realities. Especially huge given that you are shouldering that burden alone. The fact that you have managed to ensure that your father is safe and cared for is the single most important thing you can do for him. It is a herculean accomplishment and nothing else is possible beyond that.

You can't change his diagnosis. You can't control whatever his journey may be. You can't change his feelings or his cognitive/mental state. But everything that you are actually able to impact positively you are doing. That is just extraordinary. Please try to give yourself some credit for that.

I would argue that advocating for more Ativan (or whatever it takes to keep him comfortable) is the best use of your time, the best thing you can tangibly do for him. That kind of thing will improve whatever time he has left - and that's really all you can hope for. That and a mercifully brief time of suffering of course.

It is ok to allow yourself time to breathe, to sleep, to play with your kids, to take a day off to do whatever will restore you. It is ok to prioritize your young children at any given moment over something your father might need. It is ok to acknowledge that this is a short period of time - you will do your best (you clearly already are) and your best is amazing. And that still can't change the outcome. You're allowed to feel terribly about what your father is experiencing. And you are also allowed to set some limits on the extent of your sacrifice.

In the end he will be gone. And you need to still be standing. You need to find a way to make sure this doesn't drag you under, that you are there for your family, etc. So know that you are doing a truly amazing job in the face of an unbeatable foe.

And if you can, find someone in real life who can be a safe venting space for you, someone to whom you can tell the truth, say the awful things, etc... It doesn't have to be a friend - just someone who won't judge you. And most of us who have been through this sandwich generation hell phase will get it.

Hang in there. I'll keep you (and your dad) in my thoughts.

[Anonymous]

Anonymous wrote: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.

This. He's an adult human and has a right to a say in what's happening TO HIM. I just don't understand how they can go against his wishes and I'm trying to learn as much as I can. OP, still thinking about you and your dad. As others have said so well, I hope the overwhelming years of a good life well lived will wipe out the memories these last few weeks, and you can be at peace.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Hey OP, just checking in

Still here! Nothing has changed, although hospice did agree to change his little dose of Ativan to twice daily. Hoping it will help....Thanks again for how kind everyone's been.

That’s one good thing, OP. I’m so sorry. Keep advocating if the pain isn’t managed. “The pain is not under control; what are our next steps to address his pain?” You are visiting every day. You are doing all you can. You are doing a really great job, OP. You are!

[Anonymous]

Anonymous wrote:

Anonymous wrote:I'm so sorry OP. Please, we just went through this, get a very realistic picture from nurses how much time he has left. If it's a mere week, take off work and sit there and hold his hand until he passes.

I’ve found that they can’t really tell you. No one could give us a time frame until 4 days before my dad died, at which point they said it was “days to weeks.”

We had to press different nurses. Ultimately what worked was asking for immediate notice of decline. Without food or water, it's maybe a week or so.

[Anonymous]

Is he eating and drinking OP?

[Anonymous]

Nice to live in Canada where we are vilified in the world media for allowing medical aid in dying for pretty everything now including the early stages of Alzheimer's. A kind, peaceful end of life giving us incredible peace of mind in old age. You will have PTSD after this. Unbelievable that they also ration out anxiety meds to dying people.

Follow the money, it's always about that. Your elder care industry makes a huge profit forcing people to pay for their own horrible deaths. I love the suggestion to starve and dehydrate to death as an alternative. It's actually a brutal way to go but keep your heads in the sand and do nothing to change your system.

[Anonymous]

I went through this last year. My dad had pancreatic cancer. It was an awful death. And the guilt that I felt for praying that he would pass quickly is so difficult. There are so many emotions that it is hard to process. And it was so difficult to work and raise children through it all.

[Anonymous]

Anonymous wrote:Is he eating and drinking OP?

Drinking, yes. Eating erratically: sometimes soup or those vanilla shakes. Before the most recent decline, he read an article in the Times about VSED and declared he could never do it.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Is he eating and drinking OP?

Drinking, yes. Eating erratically: sometimes soup or those vanilla shakes. Before the most recent decline, he read an article in the Times about VSED and declared he could never do it.

I'm glad he knows it exists and has made a decision, though.

I hope his medical team gets on board with providing as much Ativan, etc. as will make him as comfortable as possible.

You're doing right by your dad, OP

[Anonymous]

A big hug to you, OP. I am also an only child who was responsible for my dying widowed father--and who also had a young child at the time. My father was on hospice in an assisted living facility, and it was a very positive experience. The hospice nurse visited twice a week and a doctor attached to the facility also visited several times a week. You cannot be with him 24/7, and no one expects you to be. The best thing you can do for him now is to continue being his advocate. Take notes when you visit on his demeanor, physical condition, changes in daily patterns of living, etc. and report what you see--just the facts, no emotion. Keep pressing for more pain meds or anything else that can relieve his discomfort. Keep at it and escalate if you see changes in your dad, and medical/hospice staff are not responsive to your requests. Get to know the medical director and/or the person responsible for the nurses/aides, and visit them frequently in their offices. Keep pushing them for better care that is more responsive to his changing needs. Eventually they will yield.

And when he's gone, know that you did the best you could.

[Anonymous]

Hey, OP, we're still with you for whatever you need: sympathy, an audience for venting, whatever.

Are you taking care of yourself as well as your dad? I want to show up with soup or something.

[Anonymous]

Anonymous wrote:Hey, OP, we're still with you for whatever you need: sympathy, an audience for venting, whatever.

Are you taking care of yourself as well as your dad? I want to show up with soup or something.

You're really sweet, and thank you! Nothing new to report, but I expect I'll return to this thread and stomp about from time to time....all of this just sucks.