What to Do now?
Posted on: Mon, 24/03/2008 - 19:35
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What to Do now?
My elderly mother in-law has just been diagnosed with cancers in the brain with secondaries in her chest. (This came about after many visits to A&E after falls, numerous x-rays, a stay in respite, loss of left side arm and leg, confusion etc., - our own investigations with Social services and outside care agencies). The hospital reluctantly agreed to admit her for further investigation and after we badgered them to do a CT scan, they came back with the bad news.
All we have been told is the diagnosis, together with the fact that they are going to give palliative radiotheraphy over five treatments, then what?????
She is still in hospital, although we are allowed to take her home for a few hours each day. she is on a steroid medication which has allowed her to become more mobile, her confusion has ebbed, and she is in high spirits(an effect of the steroid). she does not take any other medication for the condition, and we have conflicting information from the ward nurses, doctors, consultants etc. We were told last week that there would be a multi discipline meeting with all agencies: MacMillan Nurses; Consultants; Radiologists; Social Services; etc in the hopsital and they would assess her needs and decide on a care plan. To our knowledge, this has not occurred, nor is it written in her notes. However on Saturday morning when we went to collect her for a home visit they said that she had been discharged from hospital. After much debate from the family, we persuaded them to not discharge her as there were no plans in place for home care nor had anyone assessed her home needs. Each different doctor, registrar, department, blames the other, and we do not know where to turn. We don't know who to contact for home help and assessment, how to contact the MacMillan nurses, what are the future symptons, treatments, next steps in what we are likely to encounter, pain relief etc.
If anyone can , the family would be more than grateful for ANY advice you may be able to offer. It is so frustrating not being able to get any answers and having to resort to personal experiences for concise advice.
Many thanks in anticipation
JMK
Hi Jayemkay, I'm afraid I cant be a lot of help, but the advcie line on here maybe. To get contact with your Macmillan you may need to go through the local GP. It is appalling to think you have all been treated in this way. What on earth would have happened if she did not have you and was completely alone?
My husband had palliative care, we took that to be care at keeping him as comfortable as possible for the duration as no cure could be offered.
I am so sorry for your situation and wish you all the very best and lots of love. xxxx
my glass is always half full
Debbie, Hi and thank you so very much for your words.
Mum also has terminal illness, and we don't know how long. We just don't want her to suffer, as she has given so much to the family, and we want nothing but the best for her, but fall at the first hurdle each time we need information and where to go next. It seems that we will have to fight tooth and nail to get the best possible care from outside agencies and the NHS, but when we don't even have a starting point, makes it all the more difficult.
To know that we are not alone, and that there are people who can give comforting words and advice, makes it seem more bearable.
I have read your story and admire you for your straight talking and advice given - you are a trooper.
Thank you so much for taking the time to reply, it is truly appreciated.
Jx
Hi, I read your post and want to say how much I feel for you. When my mother was diagnosed with brain cancer secondaries, and started to feel very poory, falling over etc. (she lived alone in a flat) I freaked out...the took hold of myself and called the local Hospice.
The hospice was wonderful, they sent somebody round to see her who asked her some questions, and told me she had about 3 months as it was terminal. My mother was very confused. When I said I could not do this on my own(looking after her) as I had a home and family too, and a major back problem, they said they would have a word with the local Trust. The Hospice said that if somebody has 3 months or less, you are entitled to free home live-in help if you can't manage. they sent an angel round from an agency who moved in lock stock and barrel with my Mum, and nursed her till the end. The Hospce staff visited her every week, then 3 times per week, and then whenever we needed them. She was put on a syringe-driver with sedatives first, then morphine added nearer to the end. She never had any pain at all. She did have fits. I was there when she took her last breath and it was very peaceful.
Unfortunately, it would seem you will have to make a big fuss and complain and shout a lot in order for you to be heard!
I strongly suggest you contact a hospice as a starting point. I am sure by now you have rung the Mac nurses - there is also Marie Curie. Do let us know what the outcome is , and I hope this has been of so me help?
love tamara x
Hi
Our district nurses have also played a large part in getting specialised equipment and visiting the home to change syringe driver etc.
Barbara
Barbara