krassi
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Dear Sandie,
It seems to me you are living you life, they way everyone wishes were – smiling & giggling. I’ve found out myself how important one’s attitude is to keep them sane and genuine. 3 1/2 is great, 4 1/2 is better, 5 – better… I wish you years and years to come, dear:)
Stay strong and grow stronger:)Regards,
KrassiDear Carol,
I am praying for more “good” days, hours and minutes for your father and your family. Please do not forget to take care of yourself, rest, eat balanced meals, same goes for your mom. The most difficult times when I was caring for my sister, were when I was exhausted.
Stay strong!Regards,
KrassiDear Val,
Your story brings tears of joy in my eyes. I hope and pray all works out the best possible way for you and your family.
I hate CC with passion, because it took so much from me, and I wish it would’t do this to anyone else.Keep us posted, we do care…
Dear Dshack,
I am also a newbie to this site, but I’ve been lurking around for some time. It is a horrible disease ,indeed, I am loosing my sister from it at the moment. I don’t think there is a right thing to say at these difficult times, but the last few days on this site have helped me a lot.
There are many knowledgeable and concerned people here that are always willing not only to give advice but emotional support, as well.
I pray for him and your whole family,
KrassiDear 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…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 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…
