My sister
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Hi Krassi, Kris liked my Oxygen and I like her Haldol. Teddy went on Haldol and it made quite a difference for his hallucinations, glad Kris mentioned it as I forgotten. See what I mean about the bad times getting more faint.
Krassi –
You are such a wonderful sister and advocate. Your sister is very lucky to have you. I agree oxygen might help her feel a little better, especially if she has mets in the chest area. My husband had mets to the pleura around the lung and he ultimately was on a significant amount of oxygen. Air hunger can lead to a lot of anxiety…..if that seems to be the case then you may needs to ask for lorazepam (ativen) or haliperidol (Haldol). The ativan is a pretty basic anti-anxiety drug and can help greatly with anxiety related to any shortness of breath. Haldol is an stronget anti-psychotic medication that does help a lot with anxiety, extreme restlessness and in my husband’s case some terminal psychosis (he got a little crazy in the end). The Ativan and Haldol are standard “emergency” medications with the hospice I work with.
I am glad she is home. I know home is where she wants to be.KrisV
Dear Krassi, just want to say the Oxygen is a great idea. I forgot about that as Teddy had it and it really does relax the patient and helps them to breathe easier. I am so sorry for what all of you are having to go through. I hope for Peace for all of you, it is the kindest way to travel this horrible road.
Dear All,
Sorry I have not posted for some time – its been crazy couple of days. We are back home now and thank God for that. Spending 6 nights in the hospital was one of the most draining things for me and not particularly beneficial for Boyana. Apparently, the Bulgarian health system exiles the terminal ill. We were able to go to that hospital because we had “a connection” – a particularly kind doctor. However, he was not there 24/7 and everyone else felt like they didn’t care. At visitation time the head doctor would not even wait my sister’s replies and just say: “Yeah, yeah, well this is how it is going to be”. The night shift would “forget” the pain killers – or the doctor was in operation. I appreciate all the compassionate people there – many nurses and a few doctors. Also, this was the only hospital that would have her admitted and assist, although “she was not supposed to be there”.
Well, enough complaints:) I just wanted to depict the Bulgarian health system and how it “works”.
Tomorrow, we a doctor from a hospice facility is coming over to assess the situation and give us directions. We still want Boyana to stay at home and feel at peace till the end. She is currently having no abdominal pain (thank you, buprenorphine) but her throat is terribly dry and she says that “her chest is burning”. The doctor said that it is possible that she’s developed mets around her trachea or her heart that give her trouble. Her feet are also swollen which makes me think that either her kidneys or her heart are malfunctioning.
We already bought a special mattress and she noticed the difference, but I am wondering if we should hire an oxygen mask?Kris V ,
Thank you – my mom is a pharmacist, I will ask her to bring some Nystatine…may be after we confirm with the hospice doctor…Krassi –
I agree the Chloraseptic is awful…..there are lozenges you can suck on that work pretty good. The other thing that you might think about is if she has an thrush infection. It might not be evident in her mouth but could be in her throat. There are a couple of medications that might work for that….prescription so talk to docs….Nystatin is the best. It can be either a swish and swallow or a lozenge that can be sucked on. My husband had it a couple of times to. Another thing that can help too is what we call Miracle Mouthwash which is compounded formula here. It is nasty to but it helps numb things up….usually has viscous lidocaine, liquid benadryl and often Maalox. Others have the Nystatin in it along with hydrocortisone. Every prescriber has their own recipe. My husband hated it but it helped with the burning he got during radiation.KrisV
Dear Marion,
Thank you – the nausea med was administered through a syringe driver. She did not vomit at all yesterday, but the doctors desided that the nausea was caused by the pain killer she wad using ( buprenorphin patches). They thought she should start oxicontin(oral capsules) which she did this morning. She reacted ok, although I was surprised to read the possible side effects of this med: difficult breathing, tightness or pain in the chest. They all knew that last night she had trouble breathing, complaining from a burning sensation in the chest area.Her reaction to the oxicontin so far is drowsiness and confusion. She still has a sore throat, as she’s breathing through her mouth. I am definitely asking the docs tomorrow to recommend something.
Dear Kris,
All your advice is much appreciated. We’re definitely getting the mattress once we’re out of the hospital on Mon. I really like the idea of BioTene. Apparently we have something similar in Bg, will try to find it tomorrow. As for the Chloraseptic, she claims it’s awful. Will see what the doctor say and make a decition on the spot.Dear Lainy,
Thank you- will look it up, although I hope the mattress will be enough.Dear Gavin,
Thank you for the nice words, sometimes just sharing helps. Its sad she has “a medical team” until Monday ehen we have to go home. Before she was admitted here, my parents tried a few other places but they refused. It appears palliative care is not popular around here. With such a diagnosis doctors at most places consider her already gone. We are in contact with a hodpice, hopefully they will not turn theirback on us…Dear Darla,
I am utterly amazed of the support oozing from each message here. It helps me being strong every day…Dear Krassi,,
Can’t add much more than what has already been said, but want you to know that I am thinking of you and your family and that we are all here for you.
Hugs,
DarlaDear Krassi,
I am sorry to hear about your sister and what she is going through and I so wish that we could all help you. When my dad was in hospice care he had the pressure mattress and that helped him with his comfort with the hospital bed. You sisters comfort is of the utmost importance right now and I so hope that her medical team can get to grips with the pain and vomitting that she is experiencing.
My dad had trouble with vomitting for a long time and when he was in hospice he started to get his meds through a syringe driver and that helped a lot. That meant that he could get his meds be by passing having to swallow them and that may help your sister right now.
Please keep coming back Krassi, we are here for you.
My best wishes to you,
Gavin
Krassi, I would like to add one thing to Kris’s great list. Like she said, don’t know if you can get it there but, we call it a lambs wool sheet. When my husband was in home hospice I got him one and it is fluffy lambs wool and really helps on hospital beds or any bed for that matter. You can good lambs wool sheets. Sending you the very best thoughts and vibes..
Krassi –
We have here in the US some stuff that might help…..hopefully you can get it there. For dry mouth we use stuff called BioTene. It comes in several forms such as a gel you can wipe in your mouth or a mouthwash or even a toothpaste/mouthwash. It is an enzyme that is similar to saliva that helps a lot. The other thing is sucking on a cough drop or a sour candy of some sort….lemon drops are a good one. As for the sore throat getting good moisture in her mouth should help with that. My husband used Chloraseptic throat lozenges. They have a small amount of a numbing agent in it so it can nu,b a sore throat. It’s the same medication that is used in OraGel for baby teething issues. I would think if you can’t do this at a pharmacy or other store then you should be able to get it online.As for the pain of laying in bed. I would see if you can get her up to a chair at times during the day. The other thing to do is make sure she is repositioned often….side to side is the best, even if it means placing a pillow under one hip and shifting weight to the other side. You may ask for a pressure relief mattress. She is probably at risk for skin breakdown like pressure ulcers.
Good luck and keep asking questions.
KrisV
Krassi….Degan is the same as Regan in the US. Is your sister holding down foods and liquids? If not so, then oral administration of any drug is highly questionable.
Stay strong, dear Krassi, you have a tidal wave of support on this site.
Hugs,
MarionDear Lainy,
Thank you for you support and for the list. Unfortunately, almost all its components are present. She is still sane but sometimes it feels she is looking at me like she doesn’t know where she is. I am trying to follow the advice to alleviate any pain or discomfort.Dear Debbie,
Thank you – at times like this I find myself praying much more often.Dear Kris,
Thabk you for the detailed advice. It appears that currently out bigger problems are her dry mouth and sore throat , and the pain from lying in bed for so long. I’ve been giving her massages whenever she feels like it and giving her warm tea and water. For her throat I use honey and baking soda. Do you reckon there is something else that might help?Dear Julie,
Thank you for your support. At times like these, each and every word helps….Dear Marion,
Thank you for your support. Indeed, I insisted on treating her vomiting. The nurses didn’t care much but the doctors added Degan to her medicines (not sure by what name it is known outside of Bulgaria).Dear Melinda,
Thank you for your kind words. Strength is what I (& all of us) need. I slipped and shed a tear in front of her today’. I hope she didn’t notice it…Dear Catherine,
Thank you, I am trying to prepare my parents and make them realise what is coming. Aa surreal it feels, I believe in being realistic about what comes next…Dear Krassi,
I’m glad you found us, but so very sorry that your sister must go through this and at such a young age. I wish you as much peace as possible as your family moves forward. And, best wishes that your sister is pain-free and comfortable.
Although it is not nearly enough, we are here for you, and we care.
Catherine
Dear Krassi,
I am so very sorry to hear about your sister. I am sending prayers for strength to get through this tough time. We are all here to support and help in anyway we can. Please know that we are here for you always. Hugs to you.
MelindaKrassi….my heart goes out to your family in this so very difficult time. I wish for your dear sister to be free of pain and for the vomiting to be controlled. Based on my experience with my husband and that of others, it is unlikely for the vomiting to disappear on it’s own. It must be treated aggressively because; with disease progression even saliva can back up. Don’t hesitate from addressing this with the tending physicians.
I wish for strength and peace to come your way.
Hugs,
Marion
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