Psyche
My Mum had bone pain (hot spots) for which she had radiotherapy. I am sure it would help a great deal. Surely, if it is to minimise the pain, the oncologist would agree. Best of luck.
Ann
Hi,
Have spent 5 days back at parents’ place visiting Mum at the hospice.
Lots has happened. One of the doctors said she wondered whether Mum had mets in the brain because of being confused, with memory lapses & becoming “ill” so quickly. She was taken in for a scan yesterday & we are waiting for the results.
She is a lot brighter in herself now that it looks as though somebody is doing something for her.
It’s rather frustrating at the hospice though. Everybody is very nice but apart from the washing, feeding & being put in & out of bed, nothing much is actually “happening”. Mum hasn’t been on her feet for over a fortnight & the physio is on holiday & her cover has only made one visit. Mum is very anxious to come home (as are we) but until she is more mobile, I can’t see that they will allow it because there is no way Dad or we can cope with the lifting aspect of caring for her unless we get some kind of help.
It feels like life just consists of visits to the hospice (which is 17 miles from parents place). Nobody grudges this; we would just like “more” help to get things sorted.
Oh, I do hope it isn’t brain mets. What can they do if it is??
Psyche
Psyche
Sorry to hear about your Mum’s problems, I hope my following comments can help although circumstances are different.
Can you get the hospice to get Occupational Therapists around to see your Mum’s home. They can do an assessment to determine whether she needs things like home help, walkers, bath lifts, toilet raisers etc. to make life at home easier? I am not sure if you need to go through Social Services as well for this, but I am sure that there is a lot that can/should be done.
I know this from having elderly parents myself, who find getting into the bath difficult, and walking difficult etc.
Hope this helps and that you don’t mind me posting.
P x
Psyche
I do hope the brain scan is clear. Perhaps it would be an idea to post in Secondaries to get an answer to your question.
Ann x
Hi,
Unfortunately, Mum’s scan result came through showing she has a “lesion” on the brain.
The doctors have not said how/whether they intend to do anything about it but want her mobility assessed to see whether her lack of it stems from knee pain & mental state or from the “lesion”.
As her appointment with the onc was cancelled on Monday, they have rescheduled for next Thursday. I’ll have to go, to make sure we don’t get fobbed off.
We’re getting so anxious about all this. The fact that Christmas is only weeks away doesn’t help. None of us want Mum to be institutionalised over Christmas!! And that’s the least of our worries.
Psyche
Hi there,
I’m so sorry that the results of your Mum’s scan showed a lesion. I don’t know much about brain mets but I am sure someone will be able to post who is more knowledgable than me regarding treatments . I expect you are very busy and probably completely emotionally drained right now but if you want to get your Mum home for Christmas (and you really think that is the best place for her?) then keep chasing the OT and social services so that the house can be adapted for her and your Dad.
keep strong
cheers
caroline
Hi Caroline,
Do we need to approach social services ourselves or could the hospice arrange it for us? We just don’t know the ropes. We don’t know whether the staff at the hospice are waiting for us to initiate stuff & we are thinking maybe we have to wait on them.
I did ask one of the doctors last week how long Mum had to stay & she just said “it depends on how she gets on”, whatever that means. On the plus side, her scan was arranged v quickly by them & the result took 2 days to come through, rather than the weeks of waiting & agonising that we have been used to.
I feel (and we all do) that if Mum has to stay there for Christmas, that will finish her off. It’s such an important time for her (and us). She keeps talking longingly about coming home and we don’t know how to respond to her.
Psyche
Hi, I have secondaries, not brain mets, but I do know others who have been through treatment for brain mets. Some had whole brain radiotherapy and some were able to opt for gamma knife treatment. If your Mum is well enough to have treatment for her brain lesions from learning of my friend’s experiences you might like to investigate if it’s possible for your Mum to have gamma knife treatment. See this link, NHS, Sheffield, shef.ac.uk/~ns/ Gamma knife is non invasive and recovery is usually much, much quicker. Whole brain radiotherapy is usually very tiring, it can take a while, sometimes many weeks, to recover from the effects. Not everyone is suitable for gamma knife, it depends on the number of lesions present and the position of them to. There’s lots of information on the net about both treatments. If you think these might be helpful and you haven’t already seen them some links, this one is from Macmillan, macmillan.org.uk/Cancerinformation/Cancertypes/Brainsecondary/Secondarybraintumours.aspx this one is from Cancer Research UK, cancerhelp.org.uk/about-cancer/treatment/radiotherapy/symptoms/radiotherapy-for-brain-cancer-symptoms and here is more info about stereotatic radiotherapy (gamma knife) from Cancer Research UK, cancerhelp.org.uk/type/brain-tumour/treatment/radiotherapy/stereotactic-radiotherapy-for-brain-tumours
With regards to social services, for quickness would your Mum’s GP be able to help?..but it might well be quicker to try to approach them yourselves.
Best Wishes, Belinda.
Hello Psyche,
I manage social care and health services in Northumberland (some, not all of them !!) and know that you are entitled to a social work assessment for your mum and also for her main carer, separately, to determine the most appropriate level of support. The aim is to support your mum to stay at homeas much as is feasible.
I’m not sure where you live, but primary care services and social services (community nurses, home care services, social workers etc) are required to work together to make services as seamless as possible but this is something that many PCT’s and Soc Care services are working towards, so I would guess that this is patchy across the country.
You can access a social care assessment directly or via GP, community nurses etc, but my bet would be staff at the hospice or your mum’s bcn.
Your mum should have a nominated key worker who oversees her ‘care plan’ and should be cared for by a multi disciplinary team. Family carers should also be involved in decision making.
Social care services are means tested and based on levels of need (ranging through ‘critical’, ‘substantial’, ‘moderate’ and minimal and these are determined locally by each Council) however, I would suggest you speak to staff at the hospice and look at getting a CHC (Continuing Health Care) Assessment as I would argue that your mum’s needs are the result of a health issue rather than a social care issue. Health care is not means tested, charged for or subject to local variation. CHC can be fairly contentious but again, you are entitled to an assessment. If the hospice staff aren’t helpful, contact your local social services dept directly (via Council tel number)
I think that is everything, but am really bothered with memory problems at the moment (mid chemo), so please forgive me if I have missed bits - I’ll do a bit of research over the next day or so and add in any further information I can think of. If its any help please PM me for further discussion or if you would like support re CHC, and I can do some more detailed checking out.
I have found that when you know the right words they hit the right buttons and things are sometimes helped along by that, but it is hard work and tiring, caring for parents because they mean so much to you. You need to remind yourself that you are doing something wonderful, supporting your parents and be good to yourself.
Psyche, I feel as though I have thrown a lot of info at you, and its complicated stuff even if you work in that field, never mind if you don’t. I’m sorry if I’ve made things feel worse, but am very happy to talk more about it - just let me know.
best wishes and good luck
monica xx
Hi Daisyleaf,
Thanks for all the advice. This is great. I will print it off & take it with me when I go back down to parents’ place. They live in Bedfordshire but I’m assuming that the system is the same or similar in other parts of the country.
The hospice has taken Mum off steroids as at yesterday. I do hope she doesn’t relapse into the way she was when this all started a month ago i.e. sleeping or dozing all the time, confusion, memory loss & fever.
All the best to you.
Psyche
Psyche
I have been reading your posts and am still thinking of you all, but others here are better able to advise you on some of the issues. I do so hope your Mum gets the best treatment available, soon. Good luck.
Ann x