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Daughter1932 Asked April 2023

Mom is here now and dying. Any recommendations?

Hi Folks,


My sibs brought my Mom to live with me since she was evicted from her AL. It's going much differently than any of us expected. She was totally wide awake the entire trip and excited to be here with us. Since that burst, she's essentially been sleeping most of the day, eating very little (some days nothing at all), and has now decided she doesn't want to drink anything. She loves listening to 50's music though. She spits out any meds I attempt to give her, so it is what it is.


It's been a roller coaster ride trying to get hospice here. I'm lucky as she appears peaceful and without pain at the moment. From your experiences, I'm just wondering if there is anything that I should be watching out for, or any thing you found useful/good for you/good for them during this time period with your LO.


Such good advice and care on this forum. Thank you!

golden23 May 2023
Deepest condolences on your loss ((((((hugs))))
Daughter1932 May 2023
Thanks! Hugs greatly appreciated.
NeedHelpWithMom May 2023
Daughter,

I am so very sorry for your loss. Wishing you peace as you continue to grieve.
Daughter1932 May 2023
Thank you. Will remember your wish when times get super tough.

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aj6044 May 2023
Do not under any circumstances provide food and water unless she asks. If her lips and skin are dry, use lotion. A dying body does not need food and water, and can even cause terminal agitation. Sleeping is good. Her ride to your house was probably a rally. Once they stop drinking it's about 3 or 4 days to the end (usually... stranger things can happen).
aj6044 May 2023
Under any*** typo!
NYDaughterInLaw May 2023
You did good, Daughter! May your mother's memory be a blessing to you.

"...Mad that my sister blocked my Mom's move here for so many months..." I don't understand people who do this sort of stuff. I'm sorry that you had to deal with it. And I hope that at some point you will have a chance to address this with your sister and understand why she would have done such a thing. People can be so hurtful.

ZippyZee May 2023
Keep cranking those 50's tunes and make her comfortable. Sounds like you're doing a good job to me. Definitely get hospice to visit.

Edit: oops, just saw your update, sorry for your loss. It sounds like you handled everything perfectly.
Daughter1932 May 2023
Thank you!

Just wanted the best for her, so of course, now embracing the could have, should have, would have scenario questioning that comes with death.
Chevalier May 2023
griefshare for you, reach out to your spiritual advisers, find your religious practices to define death, see this for stsrters on spirit living https://zenhabits.net/three-pillars-ty/?email=n28973045%40gmail.com (what we do for others we do for ourself )
Daughter1932 May 2023
Thank you Chevalier.

WIll check it out. I know she's good now, and was good as she transitioned. Just questioning -could this have been better...

However, I hear her in my head letting me know that she is very good. It's okay. She is fine. Everything is good!

Thanks again.
Daughter1932 May 2023
Update: Thank you all for your kind support (while sounding so oblivious too).

My Mom peacefully died on the 19th after having 2 days of wonderful hospice care (finally). She had just had a nice bath, a new nightie, music and nice candles burning that she liked. Both hospice and "Hospice Nurse Julie" taught me a lot.

Hospice said I did great, and while I know her suffering has ended, I am also sad and am angry. Mad at myself for not being able to get hospice here sooner. Mad that my sister blocked my Mom's move here for so many months. Mad I didn't have more time to enjoy her company. Just sad, mad, sad, mad, sad, mad the whole time while also being so grateful that she could be here with us the last month of her life. Just wish it had been longer and I could have given her the care she deserved sooner.

I know it doesn't sound like I'm grateful, but I am. She is at peace now. I think I just need to focus on that right now.

Thank you all again. Peace and blessings <3
Fawnby May 2023
I'm so sorry for your loss. Time to just breathe........
It really does work to breathe deeply and let it all go.
Msblcb Apr 2023
Daughter1932, we are thinking about you during this difficult time. I am praying that your mom has recovered and that engaging hospice was a positive experience for you. You are in our prayers.

booboo20 Apr 2023
Your mother seems to be showing end of life signs. What you can do now is let her listen to her music, keep her comfortable, clean and safe. Hold her hand tell her happy stories of when you were growing up, happy events that you enjoyed as a family. Read to her if this is something she enjoyed. You and your sibs have this time to tell your mom how much you love her and and let her know what a wonderful mother she was. Let her eat and drink whatever and how ever much she wants. So sorry that this is happening to you and your sibs but you will get through it.

Msblcb Apr 2023
I brought my mom home from the ALF when I engaged hospice. In my case, they were so helpful. My mom was very peaceful until the last day and then she became frightened. It was classic terminal agitation. The nurse checked for anything that could be causing it and determined it was agitation. My mom went through all of the active dying stages in one day. (I was not aware then those were normal), so it was a very stressful day. I have started listening to “hospice nurse Julie” and she describes everything we experienced. I just wish I had known then. If I had been educated I would have managed through that last day more calm and not as upset.

Getting her into our peaceful home was a blessing.

Glad your mom is not in pain and in comfortable surroundings.

God bless you and your family during this difficult time,
Daughter1932 Apr 2023
I can not wait to engage hospice. We were all ready, when I first contacted them. It seems like ages ago.

I have never heard of "Hospice Nurse Julie", but will check her out for sure. What I am afraid of is if she doesn't stay peaceful and exhibits pain.

Thank you so much for this information and blessings.

I too am very glad that she is here. She can listen to all the 50's music she enjoys and have prayers said to her too as she wishes among other things.

Thank you again!
ArtistDaughter Apr 2023
Oh wow. What a run around with Hospice. It was soooo easy with my mom. They took over within days. Once she was transfered to the end of life home, my mom was really happy, but suddenly seemed to give into her situation and stop fighting that it was her end. It was rather startling to me and everyone. And she also loved simply listening to music, didn't want to eat or drink and was very comfortable and peaceful. I'm glad I got her out of the noisy and busy nursing home environment where she was so confused and into a place where she had the same 3 caregivers every day. Peace to you.
Daughter1932 Apr 2023
Thank you so much.

I wish I had done this sooner. She seems peaceful. Maybe moving here has allowed her to be where she truly is on her path.

The world works in mysterious ways, we can't know all. Only do our best.

Even the hospice roller coaster has gone from infuriating to amusement (so what could possibly happen next? Oh that could happen...). I doubt I would feel this way if my Mom seemed pained, that would be a whole other can of worms, but maybe the roller coaster is in her best interest. I just can't see it.

Thank you again.
Riverdale Apr 2023
This sounds very much like the stage my mother is at SN. She does have hospice at her SN facility.

The only nutrients she will take is a blended fruit drink I get her from Starbucks. There is a pretty pink one she is enjoying.

The wonderful hospice nurse told me this is her body starting to shut down. It gets more serious if no liquid is consumed.
Daughter1932 Apr 2023
Thanks!

Take care and all good and peaceful wishes to you and your Mom.
BarbBrooklyn Apr 2023
How is it that she is not on Hospice care?
Daughter1932 Apr 2023
Here's the roller coaster summary:

1 - Hospice in state she left said, to wait until she settled here.
2 - First hospice here, said all good, then they told me the next day she needed a primary care doctor's referral.
3 - Called local docs, no one is accepting new patients for at least a month.
4 - Called her doc in the state she left to send referral. So they sent the referral.
3 - First hospice now says they won't accept an out of state referral.
4 - New hospice says they will assign a primary doc. Need her medical records.
5 - Doc office, with medical records, sends me wrong form.
6 - Doc office finally sends the correct form at their closing time.
7 - Faxed it back, but Doc office closed for Good Friday.
8 - Doc office staff emailed me saying they faxed it.
9 - Medical director approval needed.
10 - Call hospice, they have not received any records.
11 - Oh wait, the Doc office didn't send the records as the person who sends records was off for several days, so the records did not get sent as stated.
12 - Said again, they will send.
13 - Hospice says they still didn't receive it. They call.
14 - Still no records they say even after they called, and the Doc office says they are ready to send.....
15 - In the midst of this, my primary says he will take her one, but he is away and won't be back for another week.....

........yes, everyday has been stunningly crazy. Yet, my Mom is peaceful thankfully.

I expect the unexpected at this point. Feel like I couldn't make this stuff up if I tried!!!

Thanks for asking. I was trying to spare the details, but here's a bit of a summary of what might happen too when seeking hospice care.

Unbelievable I know, but true.
funkygrandma59 Apr 2023
First and foremost get hospice on board. I'm not sure why you're having such a "rollercoaster ride" getting them to come to your house. They should be at your house the day you called, or the next day at the very latest. Perhaps you need to call another hospice agency in your area.
Hospice will be better able to answer any questions you may have as everyone's experience is different. And because the good folks at hospice are human they are often very wrong on their assessments as well.
My late husband was under hospice care in our home for the last 22 months of his life and I was told several times that the end was near when it wasn't. When his time finally was here, hospice told me he would be dead in 3 days and it took him 41 days of not eating and about 25 days with no drink, before he finally passed.
So the moral of the story is....only the Good Lord knows the day and time that He will call your mom Home, so just enjoy whatever time you may have left with her and leave nothing left unsaid.
God bless you.
Daughter1932 Apr 2023
Thank you for your story. Greatly appreciated. Yes, who really knows? I totally believe this -until it happens, it happens.

See about to find out more of our roller coaster with hospice care. Strange, but true.

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