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My thoughts and prayers are with you. Thank you for all your advice while my mum and I were on the similar path to you and your Mum. I wish it could have been different.
Love janAugust 18, 2016 at 5:22 am in reply to: Hi – new to the site. Just likely diagnosed with IHC #93021
Hello Brian and Barbara
I have just read your post and although no expert I would just like to say having been through this awful journey with my mum that you have to go to the knowledgable experts whatever it takes. This journey can take hold so fast and you think your doctors are advising and doing the right things but YOU cannot wait while they learn about CC . The people on this site really do have the best advice available , go find a CC specialist if that is the route you are on even if it feels wrong to second guess your doctors.
Hopefully you get answers from the meeting.
Thinking of both of you as you wait.
I have just read your August post and I am so sorry for your loss. I know exactly how you feel as my mum too is no longer here, only five days before your Mum.
Having read your posts along the way take comfort from the knowledge that you were there for your Mum and were her advocate along the way. You were loving and caring and your mum is proud of you, her Daisy.
I knew it was coming but it was not supposed to be now. I needed all your advice for which I am eternally grateful and touched my mum every day. My daughter arrived on Saturday night and as usual we all went to see Mum on Sunday.
I helped brush her teeth and she told us to use aloe Vera for stings.
As always we left saying we would be back after lunch and I spent time with her doctor , we discussed a change to the anti nausea meds and again were told probably long weeks.
Thirty minutes later Mum had asked for a bed pan and as it arrived Mum took her last breath.
No warning signs, not even for the professionals. Her heart stopped.
I miss my mum more than words will ever express .
I can say no more now but thank you to all you brave wise people. The gifts of your advice mean Dad was more able to cope and I had quality time with my mum. But I do feel she left before her time .
I am grateful she had no pain and still looked like Mum but I truly thought I would know when the end was near.
I love and miss my mum.
Thank you all.
Thank you for that. Still working with Dad and will make that contact.
Most appreciated and appreciate your posts.
Well the roller coaster continues. Mum had the two stents in the duodenum and definitely that has stopped the continual vomiting of awful brown liquid. I think my mum expected to leap out of bed and life would be normal for a while but instead Mum has been bedridden ever since and has lost all confidence in her ability to move , mainly due to the fainting spells.
I really do not know where we are going and keep trying to find out from the doctors as this just feels like no mans land. They believe blood pressure and postural hypotension are the main factors, we can’not risk tablets to increase standing bp due to a fibrillation.
Yesterday I think my mum had a mini breakthrough as the doctor did tell her they will send her home even if it is in a hospital bed!
When I got there for the afternoon the physio had taped a list to mums bed of times for her to be sat up in the bed. May seem like a little but compared to the last three weeks sitting upright with the assistance of the bed, is an improvement.
I do hope that these changes in position will get the blood moving around again and maybe we will be able to get Mum to sit on the edge of the bed next week.
Has anyone got any advice? I do not want to be the evil daughter pushing my mum but if she can do more I want her to want to do it. It is so unlike my mum to just want to lie there when she does not have to. I know she is scared of vomiting and passing out but I am scared if she does not try she will never get out of this bed again.
Love and prayers and a big hug to all the people on this forum because I am learning we have to take each day as it comes and you are not alone.
Do hope your Mum had a good birthday and you are on an upswing on the rollercoaster.
Thinking of you and sadly I can say I know how you are feeling, this wonderful forum means we can share in knowledge and understanding.
In my thoughts and prayers.
Thank you Lainy and Marion.
I was reading Gavin’s story and again it emphasizes how we all have to face similar experiences.
I was wondering how Gavin addressed the facts of his dad’s illness with his Mum? My Dad will not hear anything relating to incurable, inoperable and hates the fact that mum is in the hospice but is pretending that they are offering a different type of care to palliative.
On the up side Mum had two stents placed in the duodenum and doctors seem happy. They have halved the meds in the syringe driver for anti nausea and have halved the steroids. Now we wait to see how Mum goes over next few days. At this stage all looking good and maybe home next week.
My Mum wants me to prepare my Dad , he does not want to hear it and to be honest nor do I. I believe my mum still has time and quality time but she sees each downturn as the end and we struggle to get her to realize she is well enough again to come home and she no longer needs a bed pan but could try the commode or better yet the toilet! I feel guilty pushing her when I know it is hard for her as she is no quitter and my heart breaks for my dad who will not understand my mums attitude as he wants to believe this will all go away.
So thanks be to God we have the above going on again and we will get Mum home.
I have to return to Australia in two weeks and I am terrified each time I leave but then I feel guilty for expecting the worst. What a nightmare roller coaster this is.
More next week once we know Mum is still responding well.
Mum had her procedure and two stents now in place. Not really got any info yet as she only came back from hospital this evening.
I did realize how alone we have felt on this journey and how we have fought every step of the way because when the hospice said a nurse would accompany Mum and stay with her all day and accompany her home…. I simply cried. For the first time on this journey someone else is in mums corner .
I did ask about the passing out and doctor says that is their next big issue, believes it may be blood pressure related and perhaps some of the other medications are causing the problem due to the prolonged inactivity. I think Mum has beta blockers for the afribrillation. Flecconide ?
Looks like so far Mum feeling much better and her sense of humor returning.
Thank you for thinking of us today, I was so scared.
Lainy and Marion thank you so much for replies.
Mum goes to hospital tomorrow to have stent in duodenum so I have high hopes. The feeling of constipation is related to inflammation in peritoneum so no actual constipation which Mum is happy about, no more movicol!
Mum has had one major vomiting bout since the anti nausea driver and hopefully stent will mean driver can go too.
Outside of the obvious , really worried that mum has become very immobile and bed ridden as she keeps passing out when she tries to move. How do we get Mum marginally active again? We are waiting till stent is done so the discomfort may be gone but mum now scared to sit up or get out of bed in case she passes out.
Mum was cheeky and joking with nursing staff today and doling out our instructions for the day and we were thrilled!
A lot of hope pinned on tomorrow.
I like you am a new member and I am from Perth WA. My mum lives in England and was diagnosed in October 2015. Like your dad my mum has a multitude of health problems which include diabetes, gout, thyroid, heart afribrillation . Mum is only 77 and we did start the battle with chemo which reading this site Mum did not tolerate well but my goodness did she keep trying. I feel that perhaps our paths are similar as we believed Mum is happiest her at home and I resigned my job and have been here on and off for the last 8 months.
We are finding it hard to accept palliative versus curative treatment but that is where we are.
In the last month Mum has found mobility harder and harder and we have a commode now which gave her the confidence to be able to get to the toilet. I am finding with my Mum that confidence in her own abilities is one of our biggest challenges and although we want Mum to be here in her home with Dad and my brother it is not what my mum wants at the moment.
Mum went into the nearby hospice last week for a short stay to get on top of the feeling of constipation (but she is not constipated) and vomiting. We are on top of that but now Mum is extremely weak and I have to accept that Mum would just worry if she felt that way here at home and she likes having a call button and a lady in uniform arrives not a daughter in pj’s!
Mum too has no pain at this stage and not on pain meds , just discomfort.
I guess all I am saying is do not be afraid of hospice care as we are and were , it has actually been the best thing we did and they are so on top of everything and still aiming for Mum to get home asap. Between my dad my brother and I we believe we can do it but mum knows how she feels and we are respecting that.
It would appear CC has its own time frame and we have done seven months here at home, as with you , in the last three months Mum could never be left alone mostly in case she fell.
I hope that your Dad stays pain free and his life continues as normal as possible thanks to the actions of you and your family. Do not be afraid to accept help, we are so grateful that we did.
I am so hopeful the stent will work as in your case. They looked at draining fluid but say it is quite difficult to get to and not sufficient to drain as yet. Apparently no specific blockage yet but restriction which the stent should help.
Being on the NHS makes it hard to start Mixing in private care too, I know Mum and dad do not have private care here but will follow up at the hospice to enquire.
Thank you Marion
I will fill in the card but think maybe I was unclear . My children are coming over from Australia but Mum will only be at home or the hospice …. She is not well enough to even get to the local shops. We just want to have quality time with her even if it is at the hospice. Living the other side of the world when this illness arrives in your family just adds another dimension to keeping up.
Thank you so much for the support, we have gone from a lonely place with no support to amazing support at the hospice. Still hope that Mum will come home.
They say no actual blockage or constipation but a lot of pressure due to tumor. Next week they will put a stent in the duodenum and believe it will give Mum relief from the continual constipated feeling and hopefully stop the awful vomiting. Like Daisy I feel there are some things I will not ask in front of my mum, I want her to feel positivity . Perhaps I am in denial but mum does well when she has action ahead . Will let you know how and when stent goes. Today was a good day for Mum.
I too am a fellow Aussie and have followed your story so similar to mine. I am so sorry to read today’s post and scared as my path is so similar to yours. I am in England with my mum and hope to be there for her as you are for your Mum. My prayers are with you and your family.