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.
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.
I recommend that you look at her AL contract now to see how much of a notification is needed that she will be moving. My mom was 60 days. However, if she needed more time than 60 days, she could continue to stay. You might want to put in that notice soon. She will have to pay depending on the contract just like she had an apartment.
Here is the site to determine how to pay for 24/7 care vs an SNF
http://em.agingcare.com/dc/Fx-jTanHtEUnDVLn1xruyTFjA9EpM3io6XPKgHHTdihpX7IAQu_i67QhPdRmW2LX0PrXkGyDCxDL91H9HvTGSA6LpAHUuFI4_f2iqn6nuPOvBVt5_7PwD-fSfDGp7eznewYw3SjBw-nYF6DjWozUYSYQUz4QBneuHgRiqN5r52J7-LuurTdUDmyD7Za1ZHyz4gRDIaNJt98-4vssSkoBIOM15RsRZ8GD86h-qwABEl7EXgvdLSvUVfc3UrRRVnUG/MzA1LVpYWi00NjYAAAGIQ-Lyab8a1DNj6oG1sl1j_1HlvsdO_vMPp9Ntp3KbOsvCzRn7RDuJRnCFulYBJKtUTSJCexA=
You should ask now if her doctor feels she will be able to stay in AL or need more care before she is discharged.
So sorry ur going thru this. No, Hospice is not there 24/7. They just monitor Moms care. She should be given an aide for bathing, you can see how many hours u can fit in there. The AL should have aides looking in on Mom to see if she needs anything. Besides the Hospice Nurse, the AL nurse or Medtech can help administer the meds. If Mom was home, family would be doing most of the work. At least you have others that can help.
I suggest you talk to the ALs nurse and ask how Moms care will be coordinated between her/him and Hospice. They may have a Hospice they work with. I think a meeting between the Hosoice admitting Nurse, the AL nurse and you would be a good thing. Then ur all on the same page.
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.
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.
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.
They will closely monitor her pain and disperse as needed. My experiences with hospice were when my uncle and then daddy were still in their homes. We still needed a caregiver because hospice was in and out until death was closely imminent.
A girlfriend used a hospice facility for her dad and was very pleased with the experience.
God be with you and your family.
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.
If she is in a facility they may limit visiting hours for friends and family. But my experience is that when the end is imminent visitors are welcome any time.
Hospice does not stay 24/7. And especially now that everyone is so under staffed. My experience was with my Dad, who was home. The nurse taught us how to administer the pain meds and we did it ourselves. In a facility the staff might do it, I'm not sure.
Hospice nurses have to be the most compassionate people on the planet! To spend every day with the dying and their families takes a special gift. They will be there for YOU as well as your mother, offering information, support and direction. Please allow them to help you too. This is all new and frightening and heartbreaking. The hospice nurses can help.
As sad and painful as it is to watch your mother decline and finally pass, there is a certain grace in the experience. I felt honored and thankful to be with my Dad for his last days and final transition from life. I took comfort in knowing his wishes were fulfilled and he was being kept as comfortable as possible.
Wishing you peace during this difficult time.
2. Yes, family should be allowed to be with her as much as they want.
Indeed, having a rotation of family members with her may be something you as the POA want to discuss with the family . This will both provide her with comfort of a loved one's presence and, will allow the POA or primary person(s) to get some rest also.
3. Medication will be discussed with you ( and pt. as she is able to participate) by the RN, Case Manager of hospice team assigned to her . You should ask any and all questions about medication(s) and overall POC ( plan of care) at any time and indeed repeat questions if you feel you need further clarification or other options to consider. You ( the POA) and your mother are a part of the hospice team and your input is equally important to the time ahead.
The hospice case manager should provide you with extensive education about the proposed hospice care including providing you with EOL ( end of life) booklet ( sometimes called " Gone from my Sight") which gives a good representation of what you and the pt may experience . If they do not provide you with this , you are encouraged to ask for it ( or a similar title). All hospice agencies have one or another of these tools . You will also have the option to have multiple other hospice team members providing support with you, your family and your mother if you choose( ie. Chaplain, Social Worker, Volunteers, CNA ). be sure that you and your mother have access to your personal faith support clergy or others if you wish. The hospice Chaplain should be a good support also. Practice good self care for yourself as you will need this for the journey ahead. You are also encouraged to begin grief support with the Chaplain and or Social Worker now as grief is surely already a part of the journey and will continue to impact all of you. Honor your mother's wishes as best you can to support her dignity and patient autonomy .
My mother is the only one of our parents still living. When the time comes, we will do for her what we did for my in-laws. It was comforting to provide their needs in their last days and while it was hard, it was worth it and we do not regret any part of it.
I was blessed to be with my dad when he took his last breath, just as he was there with me when I took my first breath! Not all get to experience this but, it’s such a sacred and solemn moment.
Dealing with a terminally ill brother, my advice would be to follow her instructions if you see there is no chance of recovery.
In my situation, while he was at home, Hospice did not stay overnight. They only stayed an hour or so to do certain things.
Once he was committed to the nursing home, we were allowed to visit but not stay.
Talk to the doctor because a feeding tube could be temporary allowing the throat to recover with physical therapy.
I would still ask her to make all her choices as long as she can communicate.
If she is put on morphine she will fall into a coma-like state and she won’t be able to respond much. Talk with her as much as you can before this happens.
Stay when you feel, for as long as you feel. She will be safe and cared for when you need breaks.
Remember that you need caretaking now too because this isn’t easy.
And yes...you can stay with her as long as you want.....I send you blessings of peace as you go thru this difficult time.
- In my experience, different hospices work / are organized differently; some much more responsible and supportive to family than others.
* While this may not apply to you, individuals CAN BE admitted to hospice even though they are not terminal.
* It is heartbreaking and in my view, no one should be required to live like this, especially if they say they do not want to.
* Doing what is respectful doesn't mean a person doesn't grieve - and grieve through the process - which can be excruciatingly painful to us, witnessing our loved one, deterrent and in pain / depressed.
* My heart goes out to you. Many of us are going through the same process. It is also a spiritual process of letting go. Gena / Touch Matters
If you and other family do want to be with her round the clock, the most comfortable option might be someone’s home. We cared for my MIL in our home after she was discharged from the hospital. The hospice nurse, social worker, and aides come to you, usually a couple of times a week, though they are always available by phone if you need them or have a question. In my area there are also facilities for residential care. They are mostly used for caregiver respite but I believe some patients stay there if they are close to the end, or if their pain management requires professional care. They aren’t staffed for constant caregiver presence but would seem to be a better environment than a hospital or nursing home. They might have more volunteer availability (we were never offered volunteers with my MIL). If you choose to provide her care yourself, the hospice team will provide all the necessary instruction for medication and provide all the supplies. My experience was that they were quite thorough with the information, they made sure we knew exactly what to do and were very responsive to our questions and concerns.
Take care of you, now.
You can call different Hospice companies and ask them what their policy is.
Hugs for this difficult time Peace for your heart.
If you have ever seen someone on a ventillator, like I have then you will know why her thoughts are not heartbreaking. I made a living will for myself. I have one in my purse and on my fridge door.
I wear a bracelet that says what I am allergic to. YOU HAVE TO BE PROACTIVE when it comes to your health!
My heart breaks for this daughter and her family as they navigate through this and I don’t know them but I can hear it in this daughters words.
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