The end is near(2)

SDSmith

Well, we knew it was coming but it doesn't make it any easier.  The doctor called yesterday and told my dad that my mom needs to go into Hospice.  She cannot do anything for herself and doesn't even acknowledge the caretakers/staff when they say her name.  It's been four years since diagnosis and 10 weeks since dad put her in a home.  The good thing is, the home has a Hospice team that will come in and take care of mom -- thank God we don't have to move her.  We are meeting with the Hospice team on Saturday but I'm not sure what to expect.  Can someone explain to me what exactly Hospice does that is not already being done by the staff at the facility?

Sjodry

SDSmith,

So sorry you have arrived at this point. My mom is on hospice (in memory care unit). Hospice will typically have an assigned nurse(s) and an aide(s) who will visit your mom (usually on opposite days..ex: Nurse comes M & F, Aide on Tu/Th).

The nurses check physical status/vitals. They routinely speak with you or others involved with her care to discussed any noticeable changes or info worth reporting. They monitor and order meds as needed.

The aide(s) typically do hygiene-type care: Provide showers, bedside baths, brush teeth, wash hair, etc.

** Please note that this is my understanding of hospice and our experience only. We have had 2 different hospices and it worked the same with both.

The goal of hospice is to keep your mom comfortable until her passing. They do not provide any “life-saving” measures for the resident. But what happens if for example, like my mom..she fell and broke her hand. Those types of things can be treated. But let’s say it’s pneumonia..then you would have to make a decision to perhaps remove her from hospice care, put her in the hospital to treat it (or from home). If you leave hospice services, you can always come back to them at a later time. Or you just let the pneumonia progress.

I really appreciate the hospice team greatly. They care for my mom in a way that I do not necessarily see with many of the caregivers in her memory care unit. You can see and feel their empathetic caregiving. Between the hospice team and myself and the amount of time and attention we give to my mom, I think it helps to offset what isn’t done by other caregivers.

Best of luck to you, I hope it is a good experience for you and your mom!

Take care.

Sandy

King Boo

Peer volunteer JoC, an RN herself, who has traveled the dementia/hospice journey with many family  members, has written many excellent informative replies on this topic.  Use the search feature for JoC should have a good yield.

Hospice is a whole different philosophy - shifts to comfort care, best as can be care, instead of any curative focus.  BEWARE:   long time facility staff who do long term are often do not understand what hospice fully is, and can be very disapproving.   This also holds for some MD's.   They form attachments too.  Do not let this impede hospice decision making for you.

Hospice is an extra layer of care when death is reasonably expected in 6 months.  No one has a crystal ball.  People go on and come off hospice at times.  But, end stage dementia usually does not have this rally.

Extra volunteers to be there (if Mom has a bit of a rally, this is very nice.  My LO had many a nice wheelchair visit to the garden, or trip down the hall for ice cream, or to the music session, because of their presence).   Extra bathing aides; extra staff specifically familiar with the process and expectations of the dying process to guide YOU.  Take advantage of this; ask what to expect, what the usual progression is.   Without it, your final days with your mother can be traumatic.  With knowledge, while upsetting, you can do it with full understanding.   They are also very useful to see changes in the patient that signal there are only days left, that regular care staff cannot detect.  They can also spot signs of discomfort and pain that regular care staff cannot.

SDSmith

Thank you both for the insightful information.  She is being taken care of quite well at the facility she is in but that is day to day stuff.  I'm hoping that the Hospice team will dive a little deeper in and give mom the end of life comfort that she needs.  I just need to be there for my dad as he is quite upset at the moment.  They have been married for 59 years and it's hard to see your loved one slowly die in front of you.  My brother and I are both strong and are there for my dad -- we have even started the planning phase of a funeral so that it won't be so tough when it happens.  Peace+

dayn2nite2

Might not be so close-my mom lived a year on hospice.  Cherish whatever time you have left.

Salsam

My mom's heart doctor advised to put both my parents (with Dimentia) on Hospice during Covid because a hospital was more dangerous then.  Hospice is great.  Some people live more than a year on hospice.  I thought this might be the case with my parents, but my dad died after 7  months.. just last month..  It is ALWAYS a shock.. 

They were on hospice 3 months in my home, and then in Memory Care they were also on Hospice, which meant I could make sure they did not go in an ambulance to the hospital after a fall when there were no broken bones.  Instead the hospice nurse came and checked them.

Hospice can also serve as a check and balance to make sure they are getting the correct care in the Memory Care place..  

I have also cared for 2 people that died in their own home with Hospice care --  best of luck it isn't easy, but the Hospice people are very helpful, compassionate,  and knowledgeable.