[marachne]

no apologies necessary! I know I get confused between generic names and brand names often (example, I'm so used to saying quetiapine that the first time someone started talking about seroquel I didn't know what he was referring to). And then you get the brand names that are different in different countries -- chaos ensues!

[marachne]

How is this for timely? Also, just in general, I recommend this site -- really knowledgeable, nice guys (one's an NP), always nice to have someone do the "digesting" for you, then you can follow up with articles that seem particularly useful. It does lean someone towards the palliative care/hospital side of things, but I often find good info. And their new "arts & literature" and "case studies" sites are good too.

[mez1703]

Thank you to all you wonderful people out there who have answered some of my questions.

I am from Australia, and know names of some medication differ across the glode, and just to clarify, i am not a nurse, just a carer/companion who is concerned over a wonderful lady.

This is the second time i have had to care for a terminally ill pt - and i must admit, i have become very involved and it will break my heart when she passes. I am a better person for knowing this lady - she has tought me so much about life and what really matters. Each and every nurse and Dr that sees her say the same - that she is a very special lady.

Her morphine has just been increased and she does take Sertraline which is an anti anxiety med, she also has medication for constipation.

A bit of medical history - this lady had a triple heart bypass Sept 06, then had heart attack which caused large pseudoaneurysm, had surgery for that March 07, which failed, was in ICU for 10 day, kidneys failed - everything that could go wrong did, but she came around, Dr's said she would not live past 3 months - here we are 15 months later and she is still fighting.

She does say now it is almost time and she is too tired to fight anymore and just wants to go - she hates the thought that she is a burden to her family - her family are very loving and caring.

I am so glad i found this place, and if you all don't mind will keep writting keeping you up to date with how things are going - i am sure that we all can help this lady stay as comfortable as possible.

By the way - i asked the nurse if enemas are ever used to relieve constipation, she is going to talk to the Dr.

Thank you again.
Mez

[marachne]

Originally Posted by mez1703

I am from Australia, and know names of some medication differ across the glode, and just to clarify, i am not a nurse, just a carer/companion who is concerned over a wonderful lady.

Not surprising then that I found Ordine on an Oz site.

This is the second time i have had to care for a terminally ill pt - and i must admit, i have become very involved and it will break my heart when she passes. I am a better person for knowing this lady - she has tought me so much about life and what really matters. Each and every nurse and Dr that sees her say the same - that she is a very special lady.

I'm glad you've made such a strong connection, but be sure you also do self-care: let yourself honor your bond and your sadness, but figure out ways to also give yourself time and space. Boundaries are an issue in any kind of nursing care, but EOL is particularly susceptible--you often become closer to people who are vulnerable in open in ways not common in other settings, and the boundaries become blurred. Remember you're not the only one following her and share the burden

[snip]

She does say now it is almost time and she is too tired to fight anymore and just wants to go - she hates the thought that she is a burden to her family - her family are very loving and caring.

I'm curious, does she live with family? How involved are they? Again, if you're at all worried about your role/boundaries look at your relationships w/the family. Also, for you lady, and her concerns about being a burden, you can remind her that for many people, it is a wonderful gift to be given the opportunity to care for someone who they love. Often the concerns about being a burden are not reflected in the experiences of the people providing care.

I am so glad i found this place, and if you all don't mind will keep writting keeping you up to date with how things are going - i am sure that we all can help this lady stay as comfortable as possible.

That sounds like a good thing -- and gives you a place for support.

By the way - i asked the nurse if enemas are ever used to relieve constipation, she is going to talk to the Dr.

Thank you again.
Mez

One other thing: You asked what you can do as her carer -- you can be the eyes and ears (and nose!) of your client, as well as her advocate -- share anything w/the nurse and dr that you think is relevant -- you're with her a lot more than they are, and while they have professional and technical knowledge, you have the day-to-day experiences. Let them know your concerns, but, as someone else said, allow that they may do things differently than seems "common sense" for a reason. However, if you see adverse reactions to tx decisions they make, let them know.

good luck, you sound like a very caring, compassionate person!

[mez1703]

This lady lives alone - her husband passed from alzhiemers several years ago.

There are four adult children, 2 boys and 2 girls all married with kids of their own. They are very supportive and always visit (i am sure they have a roster going) no sooner does one leave then another one arrives - this lady is rarely on her own.

The Dr referred her to hospice, but she refused so thats why she is having palliative at home - then her children offered to have her move in with them, she also refused, so they said they will move in with her - but you guessed it, no. She is very independant, even now, but you can see that she loves it when the kids are with her.

The children are very loving and supportive, always lookiing for ways of helping. The two daughters prepare all her meals do her washing, dhopping etc - they are a very close family.

All the kids live within 5-10 minutes of thier mother. Even the grand kids help out.

Mez

[earle58]

sertraline is an antidepressant that contains antianxiety properties.
i'm glad she's getting that.
however, i would suggest an anxiolytic which would be much more effective.
we always give meds for anxiety, along with the morphine, dilaudid, whatever the pt is getting for pain.
there is a lot of anxiety in dying...

suppositories and enemas are certainly not first-line agents, nor are they used frequently.
most times, we have to titrate laxatives up to a dose that works...
and even then, sometimes nothing does.
i've had pts who have actually stopped taking their narcotics, just so they could have a bm.
that's how painful it can be.
i frequently need to digitally disimpact them.
sometimes this has wonderful results:
other times, the pt is only partially evacuated.

mez, your pt is so very lucky to have someone like you by her side.
come here anytime.
you're a pleasure.

leslie

[mez1703]

Update on my lovely lady....

She now has blisters on her legs, Silver Chain is calling in Clinical nurse to assess her today. Nurse said time is going to be sooner rather than later and will be talking to the family about having her admitted to hospice. I know this lady wants to pass away at home.

Her family are willing to stay around the clock to help and just be with her.

In your opinion, what would be the best advise to give - i know it is going to be very rough on the family no matter where she is.

Can the same level of care and comfort be given at home?

Mez

[earle58]

i don't see why she couldn't be managed at home.
let the hospice nurses do their thing, and definitely report any distressing symptoms you observe.
for instance, is she struggling for air, does she grimace/moan/whimper?
it's wonderful her family is involved to this extent.

praying for a peaceful time for all involved.

leslie

[marachne]

Originally Posted by mez1703

Update on my lovely lady....

She now has blisters on her legs, Silver Chain is calling in Clinical nurse to assess her today. Nurse said time is going to be sooner rather than later and will be talking to the family about having her admitted to hospice. I know this lady wants to pass away at home.

Her family are willing to stay around the clock to help and just be with her.

In your opinion, what would be the best advise to give - i know it is going to be very rough on the family no matter where she is.

Can the same level of care and comfort be given at home?

Mez

Mez, While I don't know all the details of the situation (where she lives in Oz, other symptoms she might have), my impression is that hospice care in Australia is very good. With hospice care, as long as her symptoms don't get out of hand, and with the large and attentive support network that she has, she should be able to stay home until her death.

That said, sometimes things turn so that the best way to achieve comfort is in an in-pt setting. Example: A friend, who has a background as a long-time ICU nurse, university professor and oncology researcher was taking care of her sister as she was dying at home. Her sister's pain became so intractable that even with the continuous, skilled care and hospice supervision, she had to go into the hospital for her last days. Not what anyone wanted, but what was the best thing for her at that point. Doesn't happen all the time, but I think it's important to be able to weigh a person's wishes against what can/needs to be done in a specific situation.

I wish you all the best of luck with these changes. As I said before, you clearly have a very giving heart, so be sure you take care of yourself too as you grieve her changes and ultimate loss.

[mez1703]

She is always struggling to breath now - very very weak, even to talk at times is too much for her. She is vomiting alot. What could the blisters be, the nurse did not say much about them, just dressed them and called for the clinical nurse to come today. Could they be from lack of circulation in her lower legs and feet?

How long does death take when you are so sick?

Mez