Follow
Share

For those of you who have helped me in the last 9 months, you know the road with Aunt was a very difficult one…especially after finding out about her health issues. I’m happy to report she is at peace now. She left a life riddled with turmoil to rejoin the love of her life & other loved ones in heaven. It was the longest quickest passing, but I really don’t have anything to compare it to.
Tuesday the 6th she was mostly ok. She’d had a cold & had a telehealth appt with her pcp. She was sleeping on & off because she didn’t feel good. That evening she’d asked for oxygen for about 30 mins. Then it was ok. Wednesday she started slipping. She was barely awake & sluggish responses. She’d had oxygen going almost the entire day. Thursday is where is started getting real scary. She couldn’t stay awake & nothing she said made sense. It was like a baby learning to talk. She barely ate 2 bites but was still drinking periodically. And then her nurse came. In the time from when I woke her up to letting the nurse in the door, we returned to see her lips the darkest blue i’d ever seen; I didn’t speak I just reacted; oxygen went on at full blast. She was still reactive in the sense that her finger would twitch if you touched her hand or eyebrows would raise if she heard voices. She didn’t eat all day & barely drank anything. Just enough to swallow her meds. She wasn’t conscious at all Friday but i suddenly noticed the whole right side of her face was drooped. That made me think she’d had a stroke on the opposite side of her brain from the first stroke she’d previously had. Being on hospice, I had no way to know for sure. I fought hard against the urge to call an ambulance. In my mind, I knew she was dying & didn’t want her to be in the hospital for that.
Saturday was what I call the time of false hope. It was a textbook example of the last burst of energy. She had 4 great hours; she had little slurring, minimal confusion, she ate an apple turnover & drank hot cider. She cycled through family that was here & said what she needed to say & managed to tell me she wasn’t scared to die she was scared because she was suffocating & in excruciating pain. by dark she had slipped into a coma. She was completely unresponsive. And then I heard something I will never get out of my head. The death rattle. Never heard it before, but I instantly knew what it was & it hit to my bones. I called after hours & the nurse came & instantly put her on end of life meds because I begged for help to take her pain & fear. It didn’t matter she was unresponsive; I was terrified she’d still feel all that. She was getting Ativan dissolvable & liquid morphine every hour. We sat by her side in shifts all day Sunday. Talking, reading, just holding her hand. Monday her remaining daughter had to leave to get back to her job & fill out papers for a leave of absence. She lives 4 hrs away, but was planning to return Tuesday. On Tuesday the 13th, I maintained our normal morning routine. Only there were new things added. I turned her tv on & started laundry. It was bath day but I knew she wouldn’t be bathed. So I changed her top bedding. Her CNA came & helped me change her gown & top bedding. She spent a few tearful moments singing & reassuring. At noon, I gave her meds, put her favorite lotion on, swabbed her mouth, & wiped her face. I walked out to get coffee & make sure my fiancé was awake. I was away 11 minutes. When I returned she was gone. She had waited until I wasn’t fussing over her to let go. And she looked so peaceful. The ONE thing she had prayed for & I was able to give her.
The road here was a very hard one. I was terrified that there would be some major cardiac event & it would be a bad passing for her. In the end, her last week, days, hours, & minutes seemed like an eternity but she was finally free. I am torn emotionally; I grieve the loss of her, in all her fiery glory, but I also know she’s the best version of herself in absolute peace & joy. It’s a hard balance.

This discussion has been closed for comment. Start a New Discussion.
Find Care & Housing
If *anyone* has any questions about CHF, secondary chronic kidney disease, or even just end of life care in general, please feel free to reach out. My experience, although difficult & definitely not “textbook”, may be able to help someone through theirs. Including the after. Readjusting to normal life is…well it’s going to be hard. I’ve been here 24/7 for 9 months. I’ve left the property maybe 3 times for no more than an hour & it was planned so there was someone here. I have discovered I have the go-out-in-public version of road range. Extreme anxiety that I didn’t have before. Probably need to see someone about that 😞 but I’m giving myself time first.
(3)
Report

*big big hugs*
(0)
Report

I think the most loving departures occur in the stillness of solitude.

My LO departed in a similar way.

Your last paragraph was beautiful and helpful to me. Many thanks for sharing your thoughts.
(2)
Report

((((((Hugs))))) and deepest condolences Accompanying a LO on their journey of leaving this world is very special and not easy. You cared for her very well. Please take some comfort in that and also that she is not suffering any more. I think you are wise to consider some help for yourself as you adjust to your new normal.
(4)
Report

I am so sorry for your loss. May The Lord give you peace, comfort and guidance for this new season in your life.

I know having the reassurance of where she is makes this so much easier. Praise be that you know she is whole and rejoicing now. It does help with the grief, it takes time to find your new purpose, so be gentle on yourself while you find out what's next.

Great big warm hug!
(4)
Report

I am so sorry for your loss.
(0)
Report

My mom did the same thing, I left the room for 10 minutes and while I was away she passed. Even at the last hour, my mom was watching out for me. Very typical behavior…taking care of me first.
So sorry for your loss.
(1)
Report

I also have road rage! Red lights push me over the edge. Extreme anxiety and a feeling of frantic thoughts. I have schedule time with a hospice counselor. This feeling is definitely unexpected.
(0)
Report

Quite a Journey - You took great care of her. Get some rest - My Brother Had a peaceful Passing . I did Not get grief counseling - you May want to check that Out . Big Hugs for a Job well done . Sorry for your Loss . Its hard to Process and takes time .
(2)
Report

My father has ckd stage 3. He’s 90. He’s lost 40 percent of his body weight in the past year. He won’t do dialysis ever. Was your person on dialysis and did they experience weight loss?
(0)
Report

My condolences to you and your family. You said it best...she is at peace now. You brought your Aunt such comfort in her last days. I hope you also find comfort knowing you were there for her every step of the way. No greater love.
(3)
Report

I am sorry and not sorry for both of you. You did the hardest job in the world!

I, too have the 'road rage' fear thing--I am sorry to say I'm glad you said that..I haven't been able to drive 20 miles to my daughter's home since mom passed. I had not put the two things together!

I'm still in the mourning phase--and it helps me to hear of others who are struggling, though I feel your pain.

To give our loved ones the EOL that they want is such a gift. Not everyone gets to do that. Be gentle with yourself. Be happy for your aunt.

This time of year all emotions are on HIGH, for some reason. I hope you can find peace and joy even though you still have much to go through.

((Hugs))
MidKid
(2)
Report

Sorry for ur loss.
(3)
Report

Your description of your Aunts final days is very moving. She was very blessed to have you care for her, and see her through this final journey.
I hope that you will now take the time to take care of yourself and take time to properly grieve the Aunt you loved, even when times with her were tough.
May God pour out his peace and comfort over you in the days, weeks, and months ahead.
(4)
Report

PeggySue2020: her CKD was at stage 3 but her toxins weren’t elevated enough or her kidneys struggling enough to be on dialysis…& she would’ve refused. We weren’t too worried about that. It was the CHF & other things she was prone to that was of immediate concern. In a month’s time, her ejection fraction had dropped from 40 to 36. So that was my first sign things were going to go bad very soon. I did not, however, expect her to be fine one day & nearly comatose the next - without some massive cardiac event. Now it is possible that she had a heart attack or more than one. I do suspect a stroke on the opposite side of her brain from the first one. But I have no way to know & honestly it isn’t important. Being here, talking to her even when she didn’t respond, reassuring her, making sure she knew she was safe & loved…those were important.
(4)
Report

No matter how prepared we think we are we're really never prepared at all, I'm sorry for your loss.
(2)
Report

I’m sorry for your loss, and hope the bad memories of the final days will fade with time and be replaced with more smiles than tears
(3)
Report

Your post brought me to tears. I'm so sorry for your loss but happy for you at the same time that now you can stop and know your aunt is at peace.

Blessings to you and your family during this time.
(2)
Report

JL,

I am so sorry for your loss. Your aunt was blessed to have a niece who cared so much for her.
(1)
Report

Update: it’s coming up on 2 months since she went Home. I started back to work a week ago. No one tells you that you’ve got to readjust to EVERYTHING. Sometimes when the house is quiet, I hear her in my head calling my name. And I jump up buy stop short as I realize she’s gone. I had my first ever anxiety attack Christmas shopping, and several to follow. Scared me half to death, so evidently I’ve developed some sort of anxiety from being shut in the house for 9 months straight. I have scrubbed the house & rearranged furniture so many times. We cleaned out 50 years of hoarding pure junk - 2 dumpsters. And there’s still more. We donated all medical supplies & equipment she accumulated over the years to the hospice provider. I need to reiterate one thing for everyone: caregiver PTSD is a real thing. It is serious & it can hit like a ton of bricks.
(5)
Report

(((((hugs))))) It takes a long while to adjust to the absence of the one we cared for. PTSD is real and hard to deal with. Mother passed just over 4 years ago. I am not sure I am over it all yet. Be kind to you!
(1)
Report

Thank you so much for updating us. You did something absolutely wonderful for your Aunt and I know you know that. You walked every single step with her. What an amazing comfort and gift you provided for her. I hope that is a comfort to you forever. My condolences, and again, this is what they call "the good death". You have my deepest admiration.
(1)
Report

JL,

I know what you mean. You were deeply involved in her life. It takes time to fully realize that they are gone.

I was very close to my maternal grandmother. After she died I caught myself dialing her phone number to chat with her.

I still remember her phone number!
(0)
Report

This discussion has been closed for comment. Start a New Discussion.
Start a Discussion
Subscribe to
Our Newsletter