September 11, 2013
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Handle With Care
It hasn’t been easy putting my thoughts on paper. I thought I was better able to handle end of life care, palliative care, DNR and stuff like that. But when doctors ask me (and my siblings) at the hospital “Does your dad understand what Do Not Resuscitate mean? Have you looked into palliative care? Does your dad prefer to die at home or at a hospice?”
I thought with my dad at home, we could manage the visits from the various people (everyone from nurse to social worker). But they just tell my sister they are coming over. The house is just an extension of the hospital. I guess surprise visits are part of the routine. It doesn’t matter that my sister has to stop work for an hour or two to deal with them. So she now bears the brunt of the questions. They insist on asking my dad questions about end of life care. I wish they would just f*ck off. While dad knows he doesn’t have years left, I don’t want him to think he only has days to live. In his current mental state, I don’t know how he’ll react.
Recently we got word that my favorite aunt passed away. My siblings and I have different views on whether or not dad needs to know and what to tell him. It hasn’t created a rift or anything like that. I told them if he ask, I’ll tell him that she passed away. I was the one that told him at the hospital about signing consent forms for applying to a hospice / palliative care centre and that the entire program of living at home is part of the hospital’s palliative care. He paused and listened attentively. I tried to keep it as simple as possible. It seemed to work. He asked a few questions and was fine with it. I think he was just glad to be going home.
I’m going to miss my aunt. I spoke to her before she started her chemo. Then everything fell apart. She never made it back home. I’m just glad she’s no longer in pain.
If you read this far down, you must be made of stern stuff. I know a lot of my recent entries have not been easy to read or even comment. A blogger who I respect wrote that he was at a lost for words and felt helpless reading my recent entries. But he wanted me to know he still read them even though he didn’t leave any comments. I thanked him, not just for his honesty but for making the journey in life a bit more bearable.
I don’t know how to close this messy entry. I know I’ll be fine and make it through this. I’ve been down this road before.
Comments (43)
Those questions are always so difficult to answer — hospice people know how to ask them, though, so they make sense but are easier to react to. I think they’re often harder for the family than for the patient! I think you’re right to tell dad about your aunt only if he asks — keeping life as unemotional as possible at this point is best for him. You’ll miss her, but it’s not something that needs to worry him (I had that same experience — my aunt died about a week before my mother). Having gone through this just 3 years ago, I know how difficult it is (and will be) for you. My thoughts are with you!
I don’t like to keep this kind of information away from him but I think he’ll get very depressed when he hears it. Thank you for thinking of me – it’s much appreciated.
I’m so very sorry about the death of your aunt.
Let your good memories of her carry you through your grief. She would want you to remember her, but to move forward.
I agree with you…don’t tell your Dad unless he asks.
I went through all of this with my Dad when he died from cancer. Then two years ago my Mom died. So, I understand a bit of what you are feeling and going through.
You have my thoughts and prayers with you.
Take each day as it comes.
HUGS!
Thank you, I appreciate the kind words and support.
sorry for your loss
Thank you.
I know dealing with and preparing for this is the last thing anyone wants to do. But to be honest, there will be good that comes with preparing. My dad was sick for years and no one was allowed to ever mention the possibility of his passing. So when he did, we had NO idea what he wanted in terms of pulling the plug, DNR or not, burial preference, even down to coffin choice.
I think it helps to talk about it in a manner that doesn’t make it so serious, as if it were just a conversation. Easy for us to say, we’re still young and aren’t the one that is facing it
Anyhow, you seem so calm and kind, I’m sure you dad finds comfort in simply having you
When my mom passed away, dad mentioned a few things about his preferences so we planned everything then. My mom was very clear about DNR and things like that. I like your idea about keeping the conversation easy.
Those are tough circumstances. I’m glad your dad can be home. I have a friend who works in home health care, and it’s hard for him to be really precise with scheduling his visits because one might go long, one might be brief, plus distance and traffic are factors. But it must be tough on your sister to have to interrupt her work.
I’m grateful that he is at home. It’s a lot of work. I appreciate the perspective from your friend, I never thought of that.
I don’t know what’s more sad (not that it matters at all), kids who care about their parents, watching them fade away, or parents without kids to care for them, dying a lonely death.
I’m a bit scared myself, not living in the same city as my parents. I don’t know what I’d do if they fall ill like this. At least my brother’s with them.
A friend of mine have a terrible relationship with her dad, I’m sure she won’t treat her dad the same way as you treat yours. Not because she’s heartless, but because her dad is an asshole.
It’s so hard to focus on the good of the past when the present is like this. Other people know the soothing words to say, I’m just glad you’re telling yourself that you’ll get through it.
The thought of a lonely death scares me a lot. It’s not too early to start doing some planning with your parents. It’s one of the most awkward subjects to discuss. By the way, one of the ways I get through all of this is looking at your awesome pictures.
Oh honey, I am so sorry to hear about your aunt. I know how much you loved her. I think you have the right idea about how you would let your father know about her death.
Hospice nurses and physicians have such a fantastic training about coping not just with the patient but also with the family. Many times they can hold the fort and deflect comments and questions from visitors if they are around.
Matt, you are in my thoughts, and I want you to have an easy and peaceful time. I pray that you do not have to see your father suffer much. Lots of love.
Thank you for sending the prayers and love. I always appreciate your support.
I’m sorry to read about this. You are a devoted son, and I am sure your father takes great strength from this.
Thank you, I also take strength from him too.
Hey Matt. Sorry to hear about your dad’s condition and also about your aunt’s passing. I think that as long as you spend the time with your dad and however long he has left, it would be what he would want most. And that you’re a terrific son for being by his side.
Thank Ben. I’m not sure if I’m a terrific son but I appreciate the kind words.
Dude, feels. I hope you can make it through all of this man.
I hope so too. I just have to stay strong.
Thoughts, prayers, and encouragement. You really are doing a good job.
Well, Matt, I’m sorry to hear this as I started slowly getting back into Xanga. A few weeks ago, my ex’s mom passed away. She was a super nice person and was like a mom to me, she told me she cared about her son very much. And we all felt very sad on her early departure, it was too soon to end like this. Anyway, since you mentioned this DNR issue, it was a very rough going for us since we literally waited days before she wilted her life after the life support was unplugged. But that’s how it goes. Well, I hope you don’t mind sharing with you at this time.
I’m sorry to hear about this Gary. I thought the DNR was going for be easy for me to accept. But when they told me they won’t perform CPR because the effort will break my dad’s ribcage, it hit home. If he survives CPR then he’ll be in a lot of pain and discomfort. I hope more people will think about this and not wait till the last minute. Thanks for sharing your story.
A book you might want to read is “Knocking at heaven’s door.” Link to an excerpt in the WSJ below. Just published a few days ago. give me a mailing address and I’ll send you a copy. Still looking for absolution on my end, but more relevant to you right now. Thoughts and prayers Matt.
http://online.wsj.com/article/SB10001424127887324577304579054880302791624.html?KEYWORDS=knocking+at+heaven%27s+door
Thank you for the link Fred. The excerpt looks interesting and pretty well in line with my own thinking. I appreciate your offer but will keep an eye out for it when I’m at the local bookstore. I don’t really have a lot of time to read now (although I should make time). I remember flying halfway around the world to see a relative on her deathbed. She was in agony. We all watched as the steady morphine drip did its job. I hope you find the absolution. Thank you for the thoughts and prayers.
Dear Matt,
First, glad you’re here on New Xanga. I decided to stick around.
Second, sorry for your loss and for your troubles. I just went over your last dozen or so blog entries. Some of which I missed after your father’s fall. Prayers, positive energy and good vibrations are being sent your way.
Right before my friend and roommate Joel passed away (at 54, in 2008) from a three year bout with cancer, we were readying him for hospice care with his brother. He died in the transfer facility.
I would think there would be better communication than doctors and healthcare workers just “dropping by” but since hospice at home is full time, perhaps they just expect someone will be there to handle them? Joel passed in his sleep and we never got that far.
I will keep you in my thoughts.
Michael F. Nyiri, poet, philosopher, fool
I’m glad to see you here Michael. Thank you for the support, prayers and positive energy.
I’m sorry to hear this, Matt. You’re going through such tough times at the moment! Your dad, your aunt and also work…
I’m not sure what to say about your aunt. I hope you take the time to grieve – because, as you said, she was your favourite aunt.
I’m glad to hear your dad is now home. I hope he gets to do some things he likes – does he read, still? I’m also happy to hear that you and your sister and still by his side.
Take care, Matt. Big hugs – yes, from cyber space.
Thank you Andrew. I haven’t taken time to grieve yet. I will. Thanks for the big hugs from down under too.
Thanks for posting this. I realize that it is very hard for you – losing your aunt and your dad’s situation.
When I brought my wife home, we knew it wouldn’t be for long…she passed away in a day and a half. My dad is 96, so we know that his time will be coming before we want it to, but right now he’s acting as though he doesn’t need to talk about the end.
Please notice my Xanga link. Still waiting for my Revelife site and then I’ll close this one.
I’ll keep your dad in my prayers. Thank you for your support.
you will make it through…and I am still here reading your words after all these years
It’s good to see you here! Thanks for continuing to read my blog after all these years.
How are things going?
I wanted to stop by and check on you!
I continue to pray for your Dad, and for you.
HUGS!
Thank you for the prayers. I’m still holding up ok. My dad still needs a lot of care.
Sorry to hear that. How are you holding up?
I’m still hanging in there Carey, thanks for dropping in.
it’s a tough time… you will make it through… hugs!!
Thanks Angel!
Continued thoughts and prayers for your Dad and for your family.
HUGS!
Thank you.
i’m sorry to have been away for so long. feels like i abandoned you, matt. for this, i’m sorry. there are very few people here on xanga that touch me in a way that a regular blogger can’t. and you are one of those few. you seem to be a much better person than many of us and yet it seems you can’t ever get a break. i have always felt this is very unfair. maybe this is just a test. and that this gloomy rocky road is only temporary that will lead you to a much smoother path that is constantly brightened by the warm sun. whatever it is, i want you to know that i have you in my thoughts. hugs.
Rudy – there’s no need to apologize. We all have busy schedules and lives. I’ve always appreciated your friendship and support here on Xanga. Life is full of challenges isn’t it – otherwise it would be boring. Perhaps there is meaning in all of this.