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Overwhelmed, exhausted, guilt, heartbroken. 
Started by Cindylou
14 Sep 2021, 6:48 AM

After battling 3 years of pancreatic cancer and chemotherapy, my dad passed away Dec. 2020. He wanted to die at home but my mom was also having health issues and was not possible for us to keep him at home. He passed one week after going to hospital. During this time I was told by palliative care that they believed my mom was showing signs of dimentia.  My mom and I decided to look after her issues after my father passed. Turns out what we were told was dimentia and pneumonia was actually lung cancer that metastasized to her brain. We found out a month ago. She has 6 brain lesions and said she didn't want treatment. I was in process of setting up homecare, palliative care etc. Last week we had to call ems and she was taken to hospital and admitted. I was hoping that she would go and maybe get her meds straightened out and return home. I would move in as caregiver. She has seriously deteriorated since entering the hospital. Confused, angry, loosing sigh but also very loving and caring. I contacted homecsre and there is a three to four week waiting period. She wants to go home, I want her to go home but I cannot do this myself. I am guilty because I told her she would die at home, she keeps asking to go home but right now it is not an option. I keep telling her I wish I could take away all her pain and suffering. I want to honor her wish to die at home but I am scarred I can't deal with everything myself. She is getting verbally aggressive and angry, very confused gets up during middle of night and wanders and lights smokes. I feel like a failure, like I am letting her down. Sometimes I feel like I am going to have a mental breakdown, I am grieving her loss while she is still here. I am beyond heartbroken.  I want to honor her wishes while doing what is best for her. I can't even imagine not having her in my life. I ask her if she is scared. I know I am. I am lost but trying to be strong for her.I am exhausted and don't know if I am making sense. Anyways, thanks for listening to my rant.
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15 Sep 2021, 4:44 PM

Hello Cindylou,
I am sorry it has taken me so long to respond to you. I may not have written, but have been thinking about you and the sadness that has been present for so many months. 

I can understand so much how you wanted to honour your mom's wish to stay at home and die at home. I think that must be one of the hardest things to bear.  I wanted my husband to be able to die at home, but the pain he had was uncontrollable at home and although I was able to provide care for him at home and had help, it just wasn't enough to keep him comfortable.  We don't always know what direction illness will take - and then hard decisions have to be made for the safety of the people we love and ourselves. You have done so much to 'make it work' at home - only you know how much physical, emotional and mental energy that has taken.  

Have the doctors or nurses suggested someone you could talk to? A counsellor or spiritual care provider? Do you have others in your life who can support you?

Not trying to be a Pollyanna here - but the love you and your mother have for each other shines through your post. I think the confusion and agitation are related to her illness - not to a change in her love and care for you.

Kind regards dear Cindylou,
Katherine
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Reply by Cindylou
15 Sep 2021, 5:46 PM

Hi,  I already miss her and hate to see her suffer.
I am so sorry about your husband. I have great friends and just started seeing a coun. Hardest thing ever. Thanks for reaching out!
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15 Sep 2021, 5:51 PM

Isn't it hard to see a counsellor! I wonder sometimes if it is my stoic nature - not a good one all the time. I had a colleague who told me once, 'Everyone needs a therapist'.  Glad you have started - that is the hardest part I think.

K
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Reply by Cindylou
15 Sep 2021, 5:57 PM

I think that a person has a limit and knows when it is reached. My friends are great supports but it is nice to talk to someone who has all the tools to help with grief, guilt, anxiety etc  As long as they are good. Which mine is.
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Reply by Seeker
15 Sep 2021, 7:27 PM

Hello CindyLou;  my heart aches for you.  What a difficult time you are having and have had for some time.  It can feel so easy to promise someone we love that we will care for them at home til the end but reality can be so, so different.  I have worked all of my career with families who are supporting a family member with dementia and I have come to realize that it is not the norm to be able to care for someone with that condition at home until the end.  Even the most well resourced, large families generally could not do it.  The disease is just too big and too devastating.  In my experience, it was a sign of strength, compassion and wisdom when families realized they needed more help than they could ever provide themselves.  And generally the person with dementia benefited from that extra care.  The other issue is that people with dementia, as they progress with the disease (no matter what is causing the dementia, such as a brain tumour) become very tuned in to their senses, as their verbal skills fail.  So the important thing can become staying connected by showing our love to them.  This can be enormously comforting.  The bricks and mortar of where they are living no longer seem to matter.  It is the way they are made to feel as their condition progresses that seems to make the biggest difference.
But our grief remains, regardless, and so I am glad to hear you are seeing a therapist who can help you to understand how expected your reactions are and how there will be a day when you will hurt less.  In the meantime, be gentle with yourself and remember that the love you show your mother will be present no matter where she ends her life.  How lucky she is to have you as a daughter!
Sending you peace.
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Reply by eKIM
15 Sep 2021, 11:13 PM

Hello CindyLou

I am a volunteer in hospice palliative care and also Grief & Bereavement. Over the past 12 years, I can't remember very many instances where Guilt and Regret were not present.  It seems it is a "default" mode for loving, caring sweet people.

I am not an expert or even a therapist, I volunteer as a compassionate companion for people on their life's journeys.  So I do research and consult the experts.  Dr. Alan Wolfelt is my favourite.  You might want to look him up on the web.  His writings are outstanding!

Keep coming back to us here at Virtual Hospice.  You will always find someone to listen to you.

-eKim

I found the following on the web concerning Guilt and Regret.  I share it with you:  It's from the "What's Your Grief" website which has a lot of good information.


MAY 22, 2015


Guilt vs Regret in Grief    https://whatsyourgrief.com/guilt-vs-regret-in-grief/


UNDERSTANDING GRIEF / UNDERSTANDING GRIEF : LITSA WILLIAMS




When it comes to grief, guilt and regret are words that get tossed around pretty regularly.  We all have things we wish we’d done differently, things we wish we had or hadn’t said, things we feel terrible about.  This isn’t our first time writing about these topics.  


We have a post on guilt here and a journaling exercise on regret here.  We also have a post on why you should never tell a griever not to feel guilty (or anyone else, for that matter!)  But we have never really talked about the important differences between these emotions, in part because I had not really given this distinction much thought until this past week.  


I was running a grief group and someone in the group expressed some things that she was feeling guilty about and another woman responded saying, “I think what you are feeling is regret and not guilt”.  This led to a lengthy discussion about guilt vs regret, which proved surprisingly helpful to a number of group members.




The difference between guilt and regret


So, what is this distinction in definitions all about?  To start, it is important to say there is no agreement about the definitions of these words.  


I checked numerous online and text sources and found variations among each definition.  So what I will share here are some common definitions and definitions that my grief group found useful this week.  No promises that you will agree!  


Let’s start with Guilt. Many suggest guilt occurs when we do something that we know is wrong while we are doing it, typically for ethical, moral, or legal reasons.  


Regret, on the other hand, is the emotion we experience when we look back on an action and feel we should or could have done something differently.  


It differs from guilt in that we didn’t actually have control over the situation.  Also, it typically is not that we did something that falls in that morally or legally wrong category, but rather a benign action (or inaction) that we later wish was done differently based on an outcome.


Let me give a grief-related hypothetical example, loosely based on examples we have heard.  Say my grandmother is very ill and I receive a call that she likely only has a couple days to live and very much wants to see me.   Due to my own internal ‘stuff’ I am avoiding the situation so I lie and say I can’t get off work and I don’t go see her before she dies.  


In this case I feel guilty because I actively made a decision to do something inconsistent with my values and love for my grandmother.  


Alternately, say I get the call and rush to see my grandmother.  I am on my way to see her when my flight is cancelled and by the time I arrive she has already died.  


In this situation the feeling I experience is more accurately regret, rather than guilt.  I did not know the flight would get cancelled, my actions did not cause that to occur, and I did not intend for it to happen.


Okay, so now comes the big, so what?  If both situations result in you feeling like crap and wishing you could change the past, why not lump them both together?  


Here is where I would say thinking about language and really understanding the nuance of these two different emotions can help us in our coping and healing.  


When we are feeling guilt, the work we need to do around taking responsibility, forgiveness, and self-forgiveness may look somewhat different than when we feel regret.  


If it is guilt, seeking to make reparations (if possible), seeking forgiveness from others, and seeking self-forgiveness all may be part of the work that has to happen to manage your guilt.  


You can check out a lot more detail on coping with guilt here.  


When you find your emotion is more accurately regret, you may find that working through it involves things like acceptance and determining how we can learn and grow from the experience.  A great place to start is this journal prompt on embracing regret.


Now that I have made this sound black and white, let me muddy it up a bit.   You have probably realized already that there are a thousand situations where guilt and regret are blurry.  


When it comes to grief, we often wish we had said or done things differently and, knowing now that the person died, we can’t help but want to impose that onto what we knew at the time.  


We say “I should have known that X could lead to Y.”  Or “I should have always behaved as though each day could be his last, as that is always a possibility.”  We allow these should-haves to morph our regrets into guilt.  


In the example above, when my flight was canceled, I might say ‘I should have known flights get canceled, so I should have driven’.  


In these situations it is important to recognize this thinking and, when possible, cut ourselves a break and accept that we can’t possibly live our lives acting on every possible outcome of every situation (easier said than done, I know).


These may sound like small and detailed distinctions, but if we want to truly heal as we grieve, it is important that we always try to clearly understand our own emotions.  


Guilt and regret are biggies, so it is worth taking some time to reflect on these and get a better understanding of your own experience.  


So no real advice today, no how-tos.  Just some food for thought to better understand our own emotions in grief.


Have thoughts on guilt and regret?  Leave a comment!  Sign up to get all our posts straight to your inbox.

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Reply by Cindylou
15 Sep 2021, 11:39 PM

Hi Kim,
Thank you for your kind words and sharing those links. Also I know the type of work you do can be physically and emotionally exhausting, so from a palliative family member I thank you for your caring and compassion. It really goes a long way!
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