My Mom is gone

daisydays

I found this forum during my own caregiving time with my Mom who battled BC, and I took great comfort in reading everyone's stories, shared in your pains and struggles, and appreciated all the advice and encouraging words. I hope by sharing some of my own here, it'll help give comfort to someone out there. 

April 2016 - Mom diagnosed with er/pr- Her2+BC; she opted no tx's as she wanted to do alternative route (dietary changes, herbs and supplements)

October 2016 - excruciating back pain, checked into a SNF 

November 2016 - diagnosed Stage 4, mets to liver, spine, skull and brain; started radiation 

Feb 2017 - admitted to hospital for altered mental state (UTI, sepsis)

March 2017 - more radiation

April 2017 - simple mastectomy (ICU stay), colostomy, skin graft 

April and first two weeks of May - no tx's to let her heal from surgeries; second week of May saw a surge of energy and a promise of her getting better 

Third week of May onward - the day after the surge of energy, she was discharged back to SNF. The next two weeks she was with a caregiver instead of me. Our funds were running low and last we were trying to stretch the funds, it was more reasonable to hire than for me to travel out here again and pay for lodging, etc. I also needed the break as I was starting to fall into depression. 

Those two weeks, sadly, she started to get weaker, reduced appetite until she no longer wanted to eat, drink and take pain meds. They started her on liquid morphine on 6/2. I was scheduled to arrive on 6/5 in time for a 6/6 onco appointment as there might have been a treatment option. However, once I saw her I knew it was time for hospice. At this point, she was very weak and could only talk in whispers. She also seemed confused. Family was called in as well. 

I knew my Mom didn't want hospice, but she also didn't want chemo either. I felt a struggle putting her on hospice care but I knew this was the right thing to do. Her pain needed to be controlled, and the extra care and attention she'd get was what we all needed. 

I look back and wondered if I'd been with her those past two weeks, would it have made a difference?she was combative before with her food and meds, and yet I always managed  get her back on track. Those two weeks I'd been on the phone with her/caregivers and her nurses And while at times she'd agree to take them, apparently she'd change her mind once I was off the phone. 

The day I came back on 6/5, she managed to tell us she was sorry for everything. She also told me "you came back, I love you" at least five times in a row. To me, that meant I might have killed her spirit in those two weeks I wasn't there and she started to refuse everything. I don't know if I'll ever forgive myself.

In the next three days, she was on a Fentanyl patch and morphine. She was in and out of sleep, and when she would wake up she was agitated. On 6/7, she managed to wake up and with great effort she said "enough" and I asked her "enough with the med?". She nodded her head. We knew she was done fighting. On 6/8 late afternoon her breathing started to be labored and early that evening we watched her breathing come to a slow until there was no more. It was very peaceful. There was no struggle. The hospice nurse was right there with us, helping and guiding us as we helped and guided our Mom in her transition into the arms of our Creator. 

Looking back, I can now clearly see that all our struggles as a caregiver including dealing with their anger and abuse is part of this whole package. I had times of breakdown being on the receiving end of the abuse. I wish I learned to not take it personally and to just turn it around. Please remember, their anger is not about you. It is their cancer that is talking. It is their pain and frustration and fight to be normal when they've lost all control that is talking. 

The constant struggle with foods, liquids and meds: gently offer, let them decide. If they want to, they WILL take them. They know their body and what I can handle. Trust them. 

When my Mom started to refuse everything, she knew her body was shutting down. It wasn't her giving up, it's not you failing, it's just time has come that the body is shutting down. While I know this to be true, I still wish I was there when this started to happen. I'd hate to think I killed her spirit due to my absence. 

Hospice is really there to help and guide you. I learned from them that when they refuse anything, let them. They know their body is in shut down mode, so it's  natural it doesn't want anything. Going against it will make it harder due to possibility of aspiration. 

Even though they are asleep/semi-coma, they can still hear. Hearing is the last to go. Keep talking to them, love on them, reminisce the great times, ask for forgiveness for shortcomings, reassure that you will all be ok as you will take care of one another, tell her of her achievements, that she is the best Mom in the world and if you had to do over you'd still pick her as your Mom, reassure gently it is ok for her to leave in peace and it will be beautiful. We did all that and played her favorite songs and said many many prayers. We realized we were in the waiting period and we kept vigil. We knew she could hear us as when we talked to her, there were times that tears would pool in her eyes and on some times a small tear would drop from the side of her eye.

I know what a struggle it was during the caregiving phase, all the abuse and fights. Sometimes I read the boards and see how some describe caregiving as a privilege and I'd think "are they on something?!". But now looking back, I realize that despite all the hardship and exhaustion, it is just part of the rollercoaster in the dark tunnel journey. Now that she is gone, I know she is in peace with no more pain and I know that I did my best to care for her and what a remarkable experience this whole thing was. You'll see that this is that ride and you'll see that you've honored your loved one by being their caregiver.

I wish you all the best. I still struggle with my absence on those two weeks she went downhill, and I hope I'll find my peace in it. It's all we can ever do in this journey: a day at a time and finding that peace in every moment. 

Love to you all. 

 

daisydays

Sorry for the typos

"They know their body and what IT can handle"

sherylcv13

Thank you for your story. 

Thank you for your story.  You can see the love between you and your mom.  So sorry for your loss.

Noellesmom

Prayers lifted

Caregiving is difficult and I am so happy you took a break. 

Will be thinking about you as you start the next part of your journey healing from your loss.

JerzyGrrl

Thank you

Thank you for sharing the insight you've gained through caregiving, as well as your encouragement. 

Just as you so obviously needed a break from caregiving, it sounds as though your mother / her body knew it was time for a different sort of break. It also sounds as though you did your very best in making good decisions. We can critique our own actions and attitudes in retrospect, but none of us had today's insights in the past. May you be very kind to yourself as you enter this next season of your life. 

SED1983

Thank you!

Thank you so much for sharing your story. I'm sorry to hear of your mom's passing.

I faced a similar situation where my mom asked my opinion on going to the ER following a biliary stent being placed (I am an ICU specialist pharmacist). She waited a couple of days before I told her I thought she was still sick enough to go to the hospital and ended up being admitted and having additional stenting placed. I wonder constantly if I gave her the right advice, especially now that she is restricted to a liquid-only diet and is being enrolled in hospice just 2 weeks after hospital discharge. I pray constantly for wisdom and peace during this very stressful time, knowing that as much time as I get with my mom it will never be enough. 

JosephK

Daisy, no reason to feel

Daisy, no reason to feel guilty. You were there in the end. Your absense didn't get her, the Cancer did. Read my story "Our last months together".  Our Grief is still fresh. Good Luck with your grief. It's a tough road to travel.

SED, I wish we had used to Stents to prolong my Fiance's life. I didn't even know about them until after the fact and they weren't even offered as an alternative. What I would do just have 2 more weeks with her. Love your mom as much as you can while she is still here. Tell her you love her even if she gets sick of hearing it. Cherish your moments.

daisydays

JerzyGrrl said:

Thank you

Thank you for sharing the insight you've gained through caregiving, as well as your encouragement. 

Just as you so obviously needed a break from caregiving, it sounds as though your mother / her body knew it was time for a different sort of break. It also sounds as though you did your very best in making good decisions. We can critique our own actions and attitudes in retrospect, but none of us had today's insights in the past. May you be very kind to yourself as you enter this next season of your life. 

Thank you, Sheryl, Noelle and JerzyGrrl...

...for the kinds and encouraging words. 

JerzyGrrl, thank you too for articulating how I felt about the past and what I know now. 

Yesterday marked the third month my Mom passed. The tears have lessened but the ache is still strong. Taking it a day at a time. i have never felt so alone than when I lost her, and everyday feels like she's drifting further away. just taking comfort that she no longer has to deal with so much anguish and pain that cancer brought on to her. 

God bless you all. 

daisydays

SED1983 said:

Thank you!

Thank you so much for sharing your story. I'm sorry to hear of your mom's passing.

I faced a similar situation where my mom asked my opinion on going to the ER following a biliary stent being placed (I am an ICU specialist pharmacist). She waited a couple of days before I told her I thought she was still sick enough to go to the hospital and ended up being admitted and having additional stenting placed. I wonder constantly if I gave her the right advice, especially now that she is restricted to a liquid-only diet and is being enrolled in hospice just 2 weeks after hospital discharge. I pray constantly for wisdom and peace during this very stressful time, knowing that as much time as I get with my mom it will never be enough. 

SED1983, thank you

for sharing your story. I hope you've found it in you to be gentle to yourself with the advice you'd given your Mom. You would have only given her the advice you believe was best for her, I hope you don't doubt it anymore. You and your Mom are in my prayers. 

daisydays

JosephK said:

Daisy, no reason to feel

Daisy, no reason to feel guilty. You were there in the end. Your absense didn't get her, the Cancer did. Read my story "Our last months together".  Our Grief is still fresh. Good Luck with your grief. It's a tough road to travel.

SED, I wish we had used to Stents to prolong my Fiance's life. I didn't even know about them until after the fact and they weren't even offered as an alternative. What I would do just have 2 more weeks with her. Love your mom as much as you can while she is still here. Tell her you love her even if she gets sick of hearing it. Cherish your moments.

JosephK, thank you for understanding

and sharing this painful road with us. i too would have given anything to have two more weeks with her, and still wish I never left her side when I was breaking down. If only... 

We can only embrace these memories we have and continue to cherish those. I pray everyday for even just one dream where I can see her again, talk to her again, and remember it when I wake up. It's been three months and I'm still praying, waiting...

take good care.

ClaCla

Blaming Ourselves

Thanks for sharing your experience and insights.  There is no reason to blame yourself; families have real financial constraints.  My mom suffered a year with advanced multiple myeloma before she passed on.  I went back as often as I could afford financially and as often as I could without losing my job.  I know my mother totally understood those constraints, but I still found reasons to blame myself for not doing better before and during her illness.  Fortunately I was able to let go of the guilt pretty quickly.  I have read that dying takes concentration and have observed that people often die when everyone steps out of the room for a bit.  Maybe your mom needed that two-week letting go period to start her transition.  I am a big believer in letting the loved one know that it is okay to go on, that their loved ones will be okay.  So sorry for your loss.  Thanks again for sharing your loving experience.

daisydays

ClaCla said:

Blaming Ourselves

Thanks for sharing your experience and insights.  There is no reason to blame yourself; families have real financial constraints.  My mom suffered a year with advanced multiple myeloma before she passed on.  I went back as often as I could afford financially and as often as I could without losing my job.  I know my mother totally understood those constraints, but I still found reasons to blame myself for not doing better before and during her illness.  Fortunately I was able to let go of the guilt pretty quickly.  I have read that dying takes concentration and have observed that people often die when everyone steps out of the room for a bit.  Maybe your mom needed that two-week letting go period to start her transition.  I am a big believer in letting the loved one know that it is okay to go on, that their loved ones will be okay.  So sorry for your loss.  Thanks again for sharing your loving experience.

ClaCla, thank you

for the reassurance. I am sorry for your loss. It sounds like you did all you could for your Mom and she knew it. I'm glad you were able to let go of the guilt pretty quickly --- I'm still working on mine. Thank you for sharing your story and for understanding. The financial hit was the last punch for me. 

That's interesting about how dying takes concentration. There might be something to it and could indeed help explain her sudden decline from having a great week to the opposite in the next two weeks while I was gone. 

I found that being there on her last week similar to what it might like being a doula -- coaching and encouraging someone giving birth, only in this instance I was coaching and encouraging her to be birthed into the next phase. My sister and I kept reassuring her it was alright for her to move on and that we were all going to be ok. My husband, who drove with our dog for three days, arrived two hours before she passed did the same thing -- reassured her he will be there to take care of me. 

Thank you again, ClaCla. Sending you lots of love.