What to expect now hospice has taken over mom’s care?

Wag,
I missed that your mom passed, as well.
I'm so sorry for your loss and grief, but I am glad your mom is now at peace, in all truth.
Heart goes out to you. Sorry to have missed this.

Wag, somehow your update was missed.

I am so sorry for your loss.

May The Lord give you strength, peace and comfort during this new season in life.

You were a good advocate and daughter for her, God Bless you for all you did.

Dear Waghmg,
I'm so sorry for your loss and especially for how you feel about your mother's death.
It certainly doesn't seem as if hers was a peaceful passing, and I can understand how upsetting that is for you.

May I offer alternative ways of thinking about it?
The first is that your mother's actions meant that she died under her own terms. She disconnected herself from the tubes and machines that were keeping her alive, so, however frantic her actions were, she had agency at the end.

The other thought is that your mum didn't linger and suffer for a long time. That would, potentially, have been more distressing for her.

I hope that you can reconcile yourself to how your mum died and find peace.
Wishing you all the best.

I'm so sorry for your loss and all of the attendant angst, Wag.

May you be comforted by your good memories and heal in peace

I don't know what your mum's hospice provider will do, but I can tell you about my mum's experience with the UK version.
Mum had been admitted into hospital for yet another chest infection. She wasn't eating and the hospital even struggled to get her to drink her meal replacement shakes.
I had already been told that Mum's COPD was advanced and "end stage". She was struggling to breathe and her lungs couldn't cope with the fluid build up. She became frightened and hyperventilated when it got bad.
A palliative care doctor arranged to send Mum home once everything was in place: a hospital bed, increased carer visits, a syringe driver for the drugs and daily visits from a district nurse to administer the drugs and check on Mum. Her husband had declined sending Mum to a nursing home or hospice for palliative care, although that's what I wanted as there would be a nurse there 24/7.

Mum was taken off the tablets for her thyroid, epilepsy, painkillers and the antidepressant. In their place, the syringe driver administered a sedative that was also an anticonvulsive, morphine, and an increased dose of glycopyrronium bromide. Mum had been on a low dose of the latter to ease her COPD symptoms, but in very high doses it stops secretions to prevent the build up of fluid in the lungs. This made Mum feel so much more comfortable, but it is only possible to give in high doses when the patient is close to dying.

Mum was initially given lower doses of the sedative and morphine, and they were increased as Mum's discomfort and agitation increased. The nurses were on call 24/7 and we did call them out a couple of times, late at night, when Mum's agitation increased; they upped the morphine and sedative doses.

Mum was "with it" for a few weeks before she seemed to slow down, then she slipped into a long sleep some days before she died. Mum had stopped eating all together and barely had any liquid from the point when the palliative care team took over. We had been constantly coaxing her previously, and it felt strange and wrong to stop, but it was also a relief to not have to stress Mum by trying to make her do something she really didn't want to do. Eventually, we stopped offering, especially as we were told it would be counterproductive when one of the objectives was to stop fluid build up. And, of course, Mum's swallow became unsafe.

Mum could have lived weeks or months longer if she hadn't been given comfort care drugs and we'd continued to push nourishment, but she would have been in constant distress, discomfort, even pain. It wouldn't have been right to let her suffer.

I know that you may not get the same level of care, in fact not everyone in the UK does - it's what we call a "postcode lottery". We were lucky that the provision in this area is pretty good. However, I hope that your mum gets comfort care drugs that ease her symptoms.
I was expecting my mum to die within a week or so of going onto palliative care, especially without food and drink. Yet, as her GP had advised me could happen, Mum lived for another month, albeit in a very weakened state.
Mum had perked up in the first couple of weeks, and her breathing seemed so much easier, but that was the effect of the palliative care drugs, and they aren't suitable for long-term use. So please don't get scared that the wrong decision has been made if you see a temporary improvement in your mum.

I hope that you, your mum, and the rest of your family can find comfort and peace. Take care.

Waghmg: I am so sorry for your loss and send sympathies.

I was minimally included in my dad’s hospice plans and even the funeral originally. But I knew hospice had to offer to any family member counseling so I signed up with them even though my sister had declined for the family. The chaplain helped me stick up for myself in terms of the latter plus grief I couldn’t really share with them.

Utilize this benefit.

So sorry to hear this. Take comfort in knowing that you have an army of supporters here at Aging Care who are thinking of you as you enter this new phase.

Come back anytime and post whatever you are feeling.

Sending you a hug.

I am sorry that I missed your update that mom had died.
I am sorry for your loss.
(((hugs)))

If you are not POA that kinda puts you in the back seat. But...
You can talk to the Hospice Team. They may not be able to answer all your questions if they are Health related. You can ask the Hospice Chaplain or the Hospice Social Worker to sort of be a go between and maybe open more lines of communication.
You are more than able to visit her. (Unless your brother and mom are restricting you for some reason)
There are some medications that are not "formulary" with Hospice and Hospice will not cover them but if she or POA wishes to continue them the medication can be paid for "out of pocket" ) Most people elect to discontinue medications that are not "necessary" things like Statins, medications to slow dementia, and others are typically discontinued.
Just know the goal of Hospice is such that the patient will be kept as comfortable as possible.
Many people think that Hospice will "kill" their loved one with Morphine or other drugs. Hospice does not "kill" people the reason people die on Hospice is because they ARE dying.
Know that mom is going to get good care. All the Nurses and CNA's that I know that work for Hospice are nothing short of Angels.

((((((((((((((((((((((((HUGS))))))))))))))))))))))))))

Wag, you aren't understanding Hospice. You have every right to their counseling, information and other services . You aren't making decisions, so you cannot do THAT, but you have a right to ask what to expect as death approaches, what medications for comfort she is getting and etc. You just can't change anything or give input to them as to what they should do. They are there to comfort and prepare you and ALL THE FAMILY for your mom's death.

They also have access to Social Workers to help you find some peace and some counseling; they have access to clergy for you.

You brother will manage care with Hospice. As you can imagine he will receive the updates and medical knowledge. So you want to maintain as close, peaceful and non-demanding relationship as you are able.

I am glad family is on board and your mom's wishes being honored.

ANOTHER UPDATE:
The journey is over for my mom. Got an unexpected call from brother late last night. I knew immediately when my phone rang and it was my brother something had happened. The most he ever does is text me and that very little these days. Don’t get me wrong, I’m so thankful he did.

Mom had been waiting for transport to the hospice facility from the hospital when from what I can gather she had a major anxiety/panic attack, pulled out all her tubes, oxygen etc and was gone…literally gone that quick.

She had JUST been made DNR and hadn’t even been on hospice but a few hours.

I was totally expecting her to go very soon - but not like that - not where she was scared out of her mind. Makes me so sad to think of that. That she didn’t have the peaceful death we thought she was finally going to have. It was so sudden. We just can’t predict how things will play out.

I was not there but had been with her the night before. I had spent all evening just trying to calm her down from unrelenting anxiety even then.

A peaceful death just wasn’t to be for her. Now is not the time to look back and wish things had been different yet it is hard not to.

I’m just trying to process it all.

My dad had advanced dementia, kidney failure, and metastasized cancer. He was becoming incontinent and had no sense of day and night. He went into home hospice in Jan 2024. The hospice provider we chose (from a list of several options provided by the hospital) encouraged all interested family member to take part in the initial meetings. I was POA and health care proxy for my dad, but my brother flew out to take part in this which I was grateful for, and my mom (who was my dad’s primary caregiver) was also there. We went over his list of meds together and decided to keep ones that helped his quality of life and drop the ones that were solely about extending his life. So, calming meds and sleep meds were kept, blood pressure and cholesterol meds were dropped. Anything connected to pain and suffering was always addressed. My mom was given “comfort meds” that could be used in addition to his regular prescriptions. It included laxatives and morphine. I don’t remember what else.

The hospice nurse was great and came 1-2 times per week or for emergencies when on call. The aides came 3X per week, the idea was to bathe him but he strongly resisted and they did not insist. They provided all kinds of things for him. A walker, bedside commode, hospital bed, pads, cleaning wipes, etc.

My dad went up and down every few days. Slept more and more. Ate and drank less and less. By early May 2024, his condition was very poor and he kept falling no matter what anyone did even standing right next to him. My mom was a nervous wreck. I convinced her to take the 5 days of respite care in a facility for him allowed by the program. Then, the morning of the day he was due to go there, he fell, hit his head really bad, blood everywhere. They took him to the ER to rule out concussion. From there, he went straight to the hospice facility and passed away from aspiration pneumonia (from his own saliva) 3 days later. His same hospice nurse visited him every day in the facility and he and all the staff there were very helpful and compassionate. They had equipment there plus trained personnel 24/7 that simply could not be possible at home. He was agitated and trying to get out of bed. They gave him morphine and that calmed him a lot.

Hospice was a godsend in my dad’s case.

best wishes.

Be very glad for this decision as it's what you've wanted.

The hospice nurse asked me, moms POA, what drugs I wanted her taken off of. I wanted her to be kept on her Tramadol for pain and Wellbutrin for anxiety and depression, the rest I was fine with discontinuing.

The purpose of hospice is to stop taking life extending measures thru drugs or medical interventions, and to instead let nature take its course.

I'm sure you can ask for a booklet from the hospice company being used for your mother's care, and they'll give you one.

My mother had CHF and pulmonary hypertension along with advanced dementia when I signed her up for hospice. She was quite active in her Memory Care Assisted Living facility until one Tues morning when she felt very tired and went back to bed. She became semi comatose immediately and then totally comatose thereafter. She never said another word and passed away peacefully, without pain, 1 week later. God came for her and she went with Him, to perfect peace, thankfully. Thats what i prayer for on her behalf for at least a year prior.....for her pain and misery to end so she could reunite with her parents and siblings again.

Different hospice care providers will do some things differently. With that caution, I'll share that my family's experience with hospice care for my mom has included the following: (1) Medications have not been automatically stopped. (2) New symptoms might or might not be responded to with new medications, but for the most part, diagnostic tests won't be done. For example, when it was suspected that Mom had a UTI, a urine test was done; when it was suspected that she had pneumonia, x-rays and blood tests were not done. (3) The staff at the assisted living facility doesn't necessarily call my sister (Mom's health-care POA and the closest family member) first when something happens. Instead, they sometimes call the hospice staff. This has prevented what would otherwise have been trips to the nearest hospital emergency department; such ED visits are stressful for Mom. (4) The hospice staff have a regular schedule for visiting Mom; when it seems as though she's doing worse than usual, they'll come more often. (5) The hospice staff bathe Mom. (6) My sister has talked to the hospice staff member who provides "spiritual guidance." We're not religious, but my sister found this helpful.