Mom (82) with mid stage dementia has been living in an ALF since May and had a stroke last Saturday evening. She initially lost the ability to move her left side that has slightly dissipated, but still can’t swallow. We met with the palliative nursing team yesterday and since she has a DNR in place they asked her if she wanted a feeding tube inserted and she declined so it was decided the next step was hospice. For anyone who may have been thru this with an aging terminal parent, do they stay 24/7 until she passes? Can family members/friends stay with her thru this horrible journey and when do they administer pain relief? I’m her medical POA and I know from many previous conversations… in her own words “I don’t want to live hooked up to a machine that just keeps me alive when I’m really not living” but this is still so heartbreaking.
Family members can absolutely stay. Hospice is all about comfort and support, for you, your mom, anyone close to her. They have chaplains if you like, a social worker, nurse, and nursing care, plus us volunteers.
You might try to reframe what you call this horrible journey and think of it as a gentle end to a life of someone who was deeply loved. She will be lucky to die with her family around her. It's heartbreaking, but it can also be a profoundly beautiful experience.
My husband was under hospice care in our home for the last 22 months of his life, and when he started his dying process, hospice told me he would be dead in 3 days. Long story short, it took 6 weeks for my husband to die with not eating for 41 days and not drinking for over 25 days.
So just enjoy whatever time you have left with your mom and make sure that you leave nothing left unsaid.
There are indications, changes that the body goes through at End of Life and when they are actively dying. Breathing changes, skin color changes are two that are watched for. The Nurse or CNA can describe these changes so it is not frightening for you.
Hospice will make sure that mom is comfortable.
When the body begins to shut down there is no feeling of hunger like we get. The body stops processing food and in many cases to give food at that point can be harmful.
((hugs))
*side note*
This past week someone on this forum mentioned a YouTube video "Hospice Nurse Julie" I have since watched a few of the videos and she is to the point, informative and well worth watching some of the videos.
Mom's RN asked me before she'd get the hospice doc to write a prescription for pain or anxiety meds; after I okayed it, then the staff would administer the meds to mom as needed. Low dose morphine was given to mom when she became bedbound (the last week of her life) if she grimaced or yelled out in pain when being turned, which was a sign of pain/distress. Mom was semi-comatose as soon as she became bedbound. Anti-anxiety meds were doled out for the two months mom was on hospice b/c she was Sundowning something FIERCE. The Ativan helped a LOT, thank God. Speak to the RN about meds, and how you'd like them to be doled out, etc.
It's a difficult journey to travel, that's for sure. I'm sorry you're going through this, and I wish you peace and Godspeed throughout. Sending you a hug, too, and my condolences for your impending loss.
I told her it was ok, she was in a lot of pain,hospice came and took over ,they administered pain medication, and wife stoped eating, after five seven days she went in a semi coma and she passed away with
I holding her hand.
we were married for more than 62 years, I do not regret loosing her, she was suffering a lot, we had a good marriage..
her hand
At home, Hospice did not / nor would they stay 24/7 but did send a nurse when I needed it. I hired private care for the nights and stayed with her during the day. As her conditions deteriorated hospice was there. I do not know what I would have done without their guidance and expertise.
Simple things like reading her body language and positioning her in the bed to be more comfortable. People tend to focus on the meds they give for comfort but in my experience, it was much more than that. They offered ME a companion that helped guide me through those last hours.
In my case, the meds came a few hours before she passed. She had some terminal agitation just prior to her passing, The hospice nurse administered the meds for us and gave us instructions on how to provide the additional meds if needed,
You are in my prayers. It is very difficult to lose a mom. It will be some time before I can recover from her loss,
Because your post was from 5 days ago, I have to assume that things have progressed markedly and that either your mom has passed and is now living in a whole new body of light or that you and family are in the vigil phase.
I was a Hospice RN and carry many end of life insights, but I've also had to make that same call as MPOA for my Dad, when it became clear that he wouldn't survive off the vent that he was placed on and I made the call to have removed because he'd have never wanted, almost to word, what you convey in your last sentence. He lasted less that an hour after the vent tubing was removed; pain meds were on board in his final days and he barely roused from the induced comatose state required for the vent.
It is heartbreaking beyond any words to lose a beloved parent and I'm still grieving, we all are.
Since your beloved mother had, when you posted, not been taking in anything buy mouth for a couple days and systems were in process of shutting down, her brain was already producing natural opiates (among the reasons that Hospice doesn't give tube or IV feedings); the body provides it's own pain control with the dying process. RNs are attuned, as is family, to the subtle cues that indicate pain in a dying person. Pain meds are administered to cover pain and restlessness.
As you know by now, the decision of whether or not family stays at bedside for the vigil is individual to each family. Staff is not able to be there due to others' needs and Hospice can sometimes provide a volunteer companion.
I hope and trust that Hospice has provided you with ample support and guidance through this journey. You described the as a "horrible journey" out of your understandable emotional anguish, but please know that your loved one is meeting her Maker and her journey is one of pure, unfathomable beauty.
I wish you and yours solace and grace during this difficult time.
Dad lived with mother and we kids spelled her off. Sometimes I took her out and went somewhere to get her mind refreshed. Dad had a peaceful and beautiful passing surrounded by all but one of his kids. We each offered a prayer, basically thanking him for being such a wonderful dad--and giving him our promise we'd look after mom and also releasing him from having to stay here on earth.
Very little of the actual care was done by the professionals. Bathing & dressing him, since he was a big man, yes. But the daily love and support he needed was provided entirely by family.
Is she getting any IV hydration? If not, she won't last more than a few days, I'd think. You can go without food for quite a while.
Was she seen by a speech and language pathologist regarding her swallowing? She should definitely be seen by one if she's still in the hospital. It should be part of their stroke treatment protocol.
When you get hospice on board, they'll talk to you at length about what they do, how and when meds are administered, and what to expect. All the hospices I dealt with for my parents gave me booklets explaining what happens in the dying process, too. You'll have support from them, because hospice is for the family, too.
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