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Wishing for the end - what a horrible thought 
Started by Lyndz
16 Jul 2020, 7:36 PM

Hi, 
I've just joined this forum, essentially looking for a place to unload and share experiences with those who truly understand.  

My dad is in end stage heart failure.  He's home, in a hospital bed, on significant pain meds & 4L of oxygen.  My stepmother is his primary caregiver and has been amazing.  I do whatever I can, meals, meds, visit often, participate in doctors appts, etc.  

He has an ICD (implanted defib), which brought him back a little over a year ago... the care team that was there didn't have the magnet to deactivate it, or he likely would have passed peacefully.  Since then, he's gone downhill quite quickly.  Now, he's lost so much weight & muscle mass he can barely hold a glass of water.  He gets angry, believing himself to be such a huge burden to us... he's supposed to be the giver.  

During this weeks doctors visit, he wanted to explore medically assisted dying.  I was there so we could ask a lot of questions, and it sounds like such a kind/dignified way to go.  The doctor confirmed a peaceful passing in his sleep (as desired) may not happen because of the ICD.  (Magnet to deactivate has been ordered, but dr indicated he can't just wear it when sleeping due to skin breakdown etc.) 

Long story short, we're getting close to the end.  This has been an ongoing challenge with Dad.  Tons of scares, tons of procedures, tons of doctors saying he won't be here much longer than he bounces back every time.  He's only 69.  

My sister keeps herself distanced from all of us, saying she's "Busy".  So, really not involved at all, and rarely talks to any of us.  My mother is a narcissist and cut me out of her life about a year and a half ago because I'm apparently too close to dad.  My stepmom has been incredible, but she's already purging the house & wanting to get rid of a lot of his belongings & memories, throwing away everything she can.  I don't like that.  

I guess where I'm struggling the most, is that we're essentially wishing for the end to come.  He's suffering, he's becoming more confused every day.  He's not eating, and can only get out of bed to get to the bathroom, and that completely exhausts him.  He doesn't understand why he's still here, nor does he want to be.  

It's a horrible thought that you want the only real family member (aside from my husband and kids) to die.  I speak with him regularly and he's been my go to person my entire life.  This walking on eggshells, waiting for the call to come in, or waiting for him to make the decision to enact MAID is heartbreaking.  I told my youngest son last night about MAID (he's 18) but I still have to tell my oldest (he's 24 and lives out on his own).  My oldest is the first grandchild, and looks exactly like dad.  

Does anyone have any advice on how to manage yourself and emotions during this time?  I'm struggling with distractions while working (working at home due to covid), and shamefully turning to alcohol to "deal" some days.  I go from being totally fine, to irritable & argumentative or teary.  Some friends have been supportive, but I'm sure they're sick of hearing about it. 

Struggling with the here & now, along with the what's next.   

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17 Jul 2020, 2:26 AM

Hi Lindz, You have come to a safe place to unload and share. Your responses - from being fine to being angry and teary sound so normal in what is a really abnormal time for your family. Plus you seem to be the go between for your family - which takes a lot of skill and energy. I know that others will respond to you as well, but I am sending you some links to what others on the CVH website have written that you might find useful.

A few years ago April01 started the thread on the forum Husband wants it over  I know the relationship is not the same as yours but her words, "My husband told me today that he just wants this all over. My heart broke but I understand." reminded me of your words. 

And some thoughts about what might help you as you go through so many emotions - probably often within minutes of each other......

In Mindfulness: Making Moments Matter Glen has written, "Mindfulness can help you live fully in the moment without getting stuck in it." 

And finally, All in this together: Coping with advanced illness and dying as a family where Fred writes, "There are no perfect solutions. But like other human beings, you are doing the best you can." 

Words I have found so helpful are, Be gentle with yourself. Take time to sleep, eat, talk with people who care.  Those people may not be the ones you turn to at other times in your life. I was surprised at the unexpected gems who came to my rescue. 

Warm virtual hugs Lindz
Katherine




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Reply by AMT
17 Jul 2020, 4:14 AM

Hello Lyndz,

Thank you for your honest post. I'm really glad you found your way to the forum, and like Katherine mentioned, this is indeed a safe place to describe and process the wide variety of feelings you are experiencing. I felt great deal of compassion reading what you chose to share. What came through for me was that there is a significant level of suffering being with your dad's deterioration and watching his confusion increase. That must be incredibly hard to watch. It makes sense  to me that you wish for his suffering to end, and it also makes sense that you want to not wish for that at the same time. 

In the last paragraph you shared that you have been using alcohol to deal with some days. I noticed you used the word 'shameful' to describe your behaviour. I would gently encourage you to not shame yourself for wanting to turn the dial down on some of the feelings that likely show up unwanted or unanticipated at all hours. It makes perfect sense to want a break from that feeling you calleld 'walking on eggshells' or that experience of big feelings showing up unpredictably. 

Finding the forum and posting on it is a great way to get some of your feelings out. Journalling and writing can be very therapeutic for some people. Many people find movement to be therapeutic, like going for a walk or practicing yoga. Self-compassion (which you may want to read more about online) can be extremely helpful. Gently stroking your hand, or even something as simple as placing your hand on your heart and quietly saying to yourself "this is a moment of suffering" can feel connecting and soothing. Experiement with many different techiques. Some you will like and some you won't. 

I look forward to reading what (if anything) you want to share on the forum as you and your father move through this journey together.

Warmly,
AMT
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Reply by TrevorL
17 Jul 2020, 12:56 PM

Hello Lyndz,

 

Thank you for sharing your experience. I can feel from your story how close you are and have been with your father and strong relationships can be so hard to watch end. Observing those we love sit in pain is incredibly hard and your message resonated with me of both desiring for your father to no longer suffer and feeling uncomfortable about his passing. I imagine that waiting and having the process drawn out is both painful and exhausting, while COVID certainly doesn't help. It is good to hear that you have some family and friends that are supportive, though I imagine how difficult it can be to see your sister avoid your father.

 

In terms of distractions, I am wondering if their are any hobbies or interests that you could pursue? It sounds like you have spent quite a bit of time with friends and family and I am wondering what else is gives you strength during this time, either with others or alone?

Sincerely,
Trevor Lehmann
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Reply by Lyndz
17 Jul 2020, 1:43 PM

Thank you everyone for your kind replies.  I didn't expect to receive such thoughful responses so quickly. 

I will try some of the self care ideas you shared, perhaps journalling would be a good place to start - it may be a good venting mechanism.  I do have some hobbies, but my motivation these last weeks have been incredibly low.  In my mind, I want to go out and do something (Gardening, berry picking, making jam, photography) but when it comes time to do it, I just run out of gusto.  I assume that's par for the course and am working my way through that.  

I spoke with stepmom again last night, dad was sleeping.  He feels good about the MAID idea, and are working their way through having his witnesses come sign the paperwork.  It's been many years.  He had a massive heart attack at 53, out in the truck (former truck driver).  Not realizing that's what it was he barely got to hospital before coding.  He's since had 8 stents, ICD implanted and the ICD wires changed twice.  The last few procedures doctors advised family to be at the hospital as it was likely he wouldn't survive.  We call him superman or the energizer bunny because he just keeps proving everyone wrong & bouncing back.  Up till a few months ago, he was still going out to ride his mower and cut the grass!  It took almost an hour to get him outside and onto it, but he took such great pride in that one task.  He's always been the doer, giver or go to ... he really struggles with being "useless".  That's where he gets frustrated the most, when we argue that point, he doesn't see all the good he continues to offer.  

I do get that, because I'm exactly like him... we are peas in a pod. I'm very much a daddy's little girl (even though I'm 43) I still look up to him for advice.  

You're right in that it's such a barrage of emotions coming and going that it's hard to control, thank you for taking the shame off of turning those down sometimes.  I'm working to find anothe rmechanism and am so thankful for your suggestions.  

Unfortunately, the family dynamic definitely makes things a bit harder.  I text my sister last night, saying I was there for the doctors appt and if she had any questions or wanted to talk let me know.  She was very short, and said "thanks for keeping me in the loop".  I was frustrated in that she didn't ask at all about how I was doing. I shouldn't have been surprised, that's nothing new.  She's not a nice person, we're vastly different.  

I'm continuing to read & explore this forum to read what others experience and how they got through it.  There is so much strength her to draw from.    <3 
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Reply by Wingman
17 Jul 2020, 3:15 PM

Hi Lyndz and welcome.
Its a time of survival mode we enter when we are facing the death of loved ones. Autopilot seems to discourage our outlets and we seem to sit on the verge of overwhelmed most of our time. Don't be discouraged with your lack of gusto but I encourage you to try to take a moment for yourself while you're in the whirlwind.
Its a daunting task to keep bedside vigil which is laced with want for end and arrival of peace.
I know of a man who lived a distinguished life and chose what was termed Palliative sedation. He lived with dignity he died with grace. I truly hope the wishes of your father and involved family is a manageable process. Its the strangest thing, the want for life and the hope for death. I understand this for you and feelings that are hard to process aren't necessarily the wrong ones.Day at a time and a moment of balance in each one is the best you can do. Sending strenght, take your time, trust your instincts.
Wingman
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Reply by eKIM
17 Jul 2020, 5:02 PM

Hello LYNDZ,  I read your posting and it really touched me.  I am 72 years old, I have/had conflicted emotions regarding the death of my Dad many years ago – we were very much a dysfunctional family.  I have learned to come to grips with my emotions and even forgive myself for my failings.


Like your Dad, I have two daughters.  They are everything to me.  One of the ways that I can face my own mortality is that I sincerely pray that I die before they do. 


I have been a hospice resident support and family volunteer for the past 10 years.  One thing that I have learned is that no two people travel the same path on this “end of life journey” or their grief journey. 


However, after observing hundreds of people I have observed some things that may be of help to you.  So without offering “fixes” (it is not appropriate or even possible) I will share my observations, if you wish.




I love what you said about your stepmom.  “My stepmother is his primary caregiver and has been amazing.


Not everyone finds their soulmate the first time around.  Sounds like your Dad did this time.  I found my soulmate, my wife, 50 years ago.  My greatest gift.




And you said, “I do whatever I can, meals, meds, visit often, participate in doctors appts, etc.  


In part, we become loveable in the act of loving others.




You said, “He gets angry, believing himself to be such a huge burden to us... he's supposed to be the giver.”  


At hospice, where I volunteer, it is very common to meet the SuperMoms or the SuperDads who have always been the “go-to” person in the family.  Often this personality dynamic defines themselves, in their own eyes.  Much of their feelings of self-worth is derived from this beautiful self-image.


The time comes when they become the “cared-for” as opposed to the “caring-one”.  The 180 degree shift is too much to process, let alone handle.  The primary response is “I don’t want to be a burden on my family.”  I know that this my PrimaryResponse and I will have to face this one day.  Family members often find this attitude an insurmountable hill to climb in the caring of their loved one.


At hospice this feeling can present itself, to the point where when asked, “Can I ……. (a multitude of options) ….. for you?” the answer is inevitably, “No, I’m fine thanks.” Some patients will not even ring for the medical staff, because they don’t want to be a “burden”.


One thing that I do is say to them is this:  “You seem to be a person, in your lifetime, who has done many nice things for people.”  I have tried to be the same way.  I always want to give more and more.  Especially to my family.  It brings me great joy to be of help.”


“I am reluctant to let someone help me.” I want to be the helper.  This frustrates my daughters who want to do nice things for me.  One day my daughter was looking sad as she left when I had refused her offer for help. 


As I pondered this, I had a “light bulb” moment.  “I am depriving my daughter of the happiness of helping me!!!”  Guess what?  The next time she came and offered help, I gladly accepted.  She broke out in a smile, helped me with my task and I swear she had a smile in her voice when she called me later to check up on me.  Lesson learned.  Love is not always in giving.  Sometimes it is in receiving.  With grace.




You mentioned the various reactions of your family members to your Dad’s illness. 


You said, “My sister keeps herself distanced from all of us, saying she's "Busy".  So, really not involved at all, and rarely talks to any of us. 


When my sister (who I had been estranged from) died last year, I was the one who reacted like your sister is reacting - withdrawal.  I could not handle it in any other way.  And there are too many family dynamics to try to explain.  Fortunately, after all was said and done, my niece (her daughter) and the rest of my family forgave me and welcomed me back into the fold.  Love and a sense of belonging are what we all seem to want and need.




You  said, “My mother is a narcissist and cut me out of her life about a year and a half ago because I'm apparently too close to dad. “ 


Again, another “pearl of wisdom” that has helped me immensely, “People can only love you as much as they are capable of loving you.”  It has nothing to do with our worthiness, so we should not beat ourselves up.  There is some limiting factor inside of them.  It’s about them.  It’s not about you.




You said, “My stepmom has been incredible, but she's already purging the house & wanting to get rid of a lot of his belongings & memories, throwing away everything she can.  I don't like that.  


Everyone copes differently.  Some people keep “everything” as a reminder.  Others find these reminders too painful and get rid of them.  Our “truth” is not another’s “truth”.


Again, everyone reacts differently in these situations.  We often cannot change their minds – and perhaps we shouldn’t try.  What we do have control over, however, is our own reactions. 


The best reaction I have found is not to be judgemental.  I came across a wonderful saying recently that is so helpful in human relations.  “The first thing that you should understand about me is that: I am not you.”  I love that!  We often judge situations and people through the prism of our own beliefs and experiences.  Often this is not helpful in understanding others.




You said, “I guess where I'm struggling the most, is that we're essentially wishing for the end to come


Even though I said that everyone travels the grief journey differently, one of the most common refrains that I have heard at hospice, after someone passes, is, “I am so relieved that he/she is not suffering anymore.”




You said, “Some friends have been supportive, but I'm sure they're sick of hearing about it. “  That may be true for some of them, however there might be some who you can unburden yourself to.  In any event, you have us here at virtualhospice to reach out to. 


Why do we do this?  At some point people (have been/will be) kind to us in our time of need.  Pay it backwards.  Pay it forwards. 


I will end with my favourite quote, “Always be kinder than necessary.  You never know the burden that someone is carrying.”


Ps  I find journaling very cathartic.  If you like, share some of it here.  Journaling can be very beneficial when it is complemented with feedback from caring individuals.


Love, joy, peace and patience.    - eKim
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Reply by Nouce
17 Jul 2020, 5:11 PM

Hello, Lyndz,

 

I'm glad so many friends have joined in support. You are in an extremely difficult place. I know so well--the questions we ask ourselves, the self-doubt, the choices we imagine and can't tell anyone else. And families are so difficult. I'm glad your stepmother is a good caregiver.

 

Please do not judge yourself for the things you think or feel. Find ways to give yourself little DIY gifts--as an exhausted caregiver I started foot soaks in scented epsom salts, just to feel loved.

 

Others have walked journeys, not the same, but so much like yours. We care.

 

Nouce
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Reply by Allyson
22 Jul 2020, 12:00 AM

Dear Lyndz,

 

I can hear in your words how tired and how sad you are.  Please know that you are in a safe space here where you are held and honoured.

 

Three years ago, tomorrow (July 22), my Dad died.  He went into the hospital after a fall and three weeks later decided he wanted to "go home."  Those last weeks of him not eating, barely drinking, and just waiting to die were the hardest days of my life. 

Reading your words, takes me back to my feelings of frustration, angst, and that terrible "unknowing" and wanting it to end.  These feelings are normal.  None of us want to see our loved ones in pain.

 

For me, allowing your emotions to be exactly what they are shows your Dad and your family who you are in the midst of this.  And that is okay.

 

Your true friends will not tire of you.  They will walk with you through this and can be an enormous source of support.

 

I have found books about grief to be an enormous help.  However, not everyone finds support from written words.  I am happy to suggest some books if you want me to.  You can just let me know on this thread.

 

May your journey through this be loving and supportive.  And may your Dad continue to be a source of strength and love for you for your lifetime.

 

Holding you in my heart.

 

Allyson
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Reply by Lyndz
22 Jul 2020, 5:55 PM

Thank you all, so much for your kind words.  

I am so sorry to hear of your journeys through loss.  Allyson - my condolensces today on the loss of your Dad, I hope you have wonderful memories that help you through today. 

Dad's journey continues day by day, and as so many of you have written it's watching him deteriorate and sadly "wait for death to come" is the hardest.  He's ready to be at peace, and it's so hard wanting that, waiting for it to happen, and watching him suffer in the interim. 

I try not to call daily any more, as he gets so tired and says he doesn't have a lot to talk about - so I settle for 1x - 2x a week, or if something happens no matter how small, I call to tell him about it. 

The family dynamic makes this exra challenging for sure.  There's no support from my mother or sister, Mom has me blocked and my sister only thanked me for keeping her informed when I text to ask if she had questions / needed to talk.  

My mind is overwhelmed most days, but I'm getting a bit better as time goes on & am able to focus on other things more.  Motivation remains very low.  

Such a difficult place to be in, and I feel for all of you who have gone through it as well.  Ultimately, I wish there was a timeline.  A finite end to the tunnel of sufferage.  The doctors have said in this sense cancer is *easier (totally the wrong word, as it's far from easy) to predict prognosis & timespan.  Heart disease, there's just no way of timestamping things.  He's been in stage 4, "end of life" for months on end.  Any research I've done re: symptoms indicates what he's experiencing is days from death - but it's been ongoing for months.  

I would love some book suggestions for those offering. 
Thanks again for the kind words, sending all virtual hugs. 
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