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What does 'end of life meds in place' mean

Relatively

New member
Feb 28, 2022
4
0
Hi, I am new here.

What do people mean, "end of life meds in place?"

I am caring for one with dementia at home. I have seen a recent decline. Eating less, sleeping most of time, very weak and now hallucinating. Actually talking to people who are not here. Dreaming of dead family members and speech is like backwards and not able to get the right words out.

No one, (doctor) has given me any information, what to expect, what to do etc, etc, etc. Is this when I need to call the doc and say HEY ned some help over here.
Also, I am unaware of this medicine people are talking about in here. Is it something Medicare covers?

Any response or any advice is appreciated.
Thank you!
 

Shedrech

Volunteer Moderator
Dec 15, 2012
12,147
0
Yorkshire
hello @Relatively
a warm welcome to DTP

you sound concerned so I'm sorry the medics aren't speaking with you ... sometimes they hold back until family/friends actually ask questions, as some people don't wish to talk ... so maybe ask directly and tell the doctor/nurses that you want to know

you ask about meds ... these are to ensure that the person is as comfortable and pain free as is possible, to save them distress

this may help with some information

you mention Medicare ... so I guess you are in the USA ... as this is a UK based site, though everyone is welcome, protocols may be different here
We do have members from the US, so maybe add a general location to your profile to highlight this

now you've started, do keep posting ... sharing experiences does help
 

nita

Registered User
Dec 30, 2011
2,410
0
Essex
Hallo, @Relatively - I think from your mention of Medicare, that you are in the US or Australia? Here, in England, the NHS pays for such drugs. They are usually injectables - one for pain relief, one for calming agitation and one to offset the effects (sickness) of the opiates. From memory, the calming one was midazolam and I think the pain relief was oxycodone. The anti-sickness injection is cyclozine.

They are kept in the house "just in case" for right at the end of life. My mother had Alzheimer's and I think these drugs were prescribed late in her dementia - over a year before she actually died. She was bedbound, sleeping most of the time, but still eating. The last week of her life she was admitted to hospital with pneumonia and they told me they thought it was aspiration pneumonia where food gets into the lungs. She came home, lived for a day and died the following night in her sleep. We didn't even know the end was coming - I'd given her a pureed meal that night and was sitting with her when she passed away - her breathing became rapid and then ceased. We just thought she was sleeping but then I realised she had gone. We were so fortunate that her passing was peaceful and with no need of the end of life drugs.

Unfortunately, some people do experience more distressing symptoms at the end of life but best not to anticipate it as it doesn't always turn out like that.

My mother had so much pain for the last 15 years of her life, it was a relief her ending was like this.
 

canary

Registered User
Feb 25, 2014
18,448
0
South coast
Hi @Relatively and welcome to Talking Point

As this decline is recent it might be due to something like an infection. I would contact her doctor (PCP?) to check her over and make sure there is nothing else causing this.
TBH, although your relative sounds pretty advanced I do not think they are yet at End of Life. In UK when someone with dementia passes away at home the doctor prescribes drugs that will ensure that they are kept comfortable and their passing is pain-free.
If you are in US, I believe that hospices are more usually involved, who will provide the drugs needed.
 

Relatively

New member
Feb 28, 2022
4
0
Hi @Relatively and welcome to Talking Point

As this decline is recent it might be due to something like an infection. I would contact her doctor (PCP?) to check her over and make sure there is nothing else causing this.
TBH, although your relative sounds pretty advanced I do not think they are yet at End of Life. In UK when someone with dementia passes away at home the doctor prescribes drugs that will ensure that they are kept comfortable and their passing is pain-free.
If you are in US, I believe that hospices are more usually involved, who will provide the drugs needed.
Thank you, I appreciate your response. I figure she should be checked, but it is very difficult to get her to go to appts. I can't pick her upand put her in the car, but I think it is time for her to be checked over. She slept almost the entire day yesterday, which is fine, however it concerns me.

I believe you are correct regarding hospice. I
I think in the back of my mind that is what I eas thinking about and really dread having to hear it may be time.
 

Relatively

New member
Feb 28, 2022
4
0
Hallo, @Relatively - I think from your mention of Medicare, that you are in the US or Australia? Here, in England, the NHS pays for such drugs. They are usually injectables - one for pain relief, one for calming agitation and one to offset the effects (sickness) of the opiates. From memory, the calming one was midazolam and I think the pain relief was oxycodone. The anti-sickness injection is cyclozine.

They are kept in the house "just in case" for right at the end of life. My mother had Alzheimer's and I think these drugs were prescribed late in her dementia - over a year before she actually died. She was bedbound, sleeping most of the time, but still eating. The last week of her life she was admitted to hospital with pneumonia and they told me they thought it was aspiration pneumonia where food gets into the lungs. She came home, lived for a day and died the following night in her sleep. We didn't even know the end was coming - I'd given her a pureed meal that night and was sitting with her when she passed away - her breathing became rapid and then ceased. We just thought she was sleeping but then I realised she had gone. We were so fortunate that her passing was peaceful and with no need of the end of life drugs.

Unfortunately, some people do experience more distressing symptoms at the end of life but best not to anticipate it as it doesn't always turn out like that.

My mother had so much pain for the last 15 years of her life, it was a relief her ending was like this.
I'm so sorry! At least you were with her and no difficult passing gor her or for you to witness.

My dad's last day was difficult for him and my mom. The family visited the day before, however it was just him and my mom on the day of his passing. We were told it was not pretty and that it was good that the family did not have to witness it. His situation was way different from what is happening with my mom.

My mom has pain from conditions where nothing can be done at her age of 91. I thought therw might be a better memory drug that could help her for a few more years.

We are in US and unfortunately our health care system does not always pay for some drugs due to a formularly. I am not in favor of having her drugged and I don think she wants that. If she is getting towards the end and in hospice, I wil allow rhem to advise.
My dad had a pump machine that administered pain meds to him, but hospice took him off a meds when he was reaching final hours. I am not sure why that was, but I remember that needing to happen. That has been a number of years ago though.

Thanks for responding!