Caring for two loved ones
Posted: Wed Sep 27, 2017 3:59 am
Hi I am new here, I look after my mum who has Alzheimer's, she lives next door, she is in earlyish stages with memory her worse problem, she does get confused but we can usually talk her through it. Recently my wonderful partner/husband to be was diagnosed with cancer, we found out 4weeks ago his condition is terminal and that he also has brain tumours. I do not know how to cope with this, My mum deserves all the best care I can give but the months ahead are going to be hard but precious for me and partner. I can't believe his diagnosis and that he may only have a few months and have no idea how to care for both of them
Re: Caring for two loved ones
Posted: Wed Sep 27, 2017 1:37 pm
That is bad and upsetting news. ((Hugs)))
In the circumstances it sounds as if hubby will need your attention most initially so may I suggest you look into some kind of outside help for Mum? Shes is more likely to accept it and get used to it now rather than later and that will take some of the pressure off you so can concentrate on hubby.
I understand that the Macmillan nurses are very good, if they are in your area, and your local hospice can probably offer support and information too.
Do keep posting, it's a difficult journey you face
Re: Caring for two loved ones
Posted: Wed Sep 27, 2017 11:22 pm
I agree - your husband comes first and foremost now. You must do everything you can for him, a nd your mum will have to be 'set aside' for the moment.
You don't mention other relatives, but if you have ANY family now is the time to make it absolutely clear to them that you are 'OFF DUTY' as far as your mum is concerned, and that is that.
To be honest, I would, I'm afraid, at this point, simply investigate that she should move into residential care in a care home - you can tell her it's 'temporary' until you get your husband's treatment sorted out or whatever is necessary, but I would hope of course that she is sufficiently still herself to understand that you MUST now put your husband totally first, and agree to make no objection and to do what she can to help you - which is by going into residential care.
next, I'm afraid, you may have to be brave and find out just what your husband's oncologist thinks are his prospects. Is this something your husband wants to know? Even if he doesn't he can give permission for YOU to be told. I know it's awful awful awful but having some idea can give you a steer on what your priorities must be.
I know you are saying 'months' and maybe, grimly, that is so - but always remember that the doctors themselves cannot know 'for certain' - they base it only on statistics. And some patients to much better than they are forecast to do.
Is your husband on anti-cancer treatment of any kind (ie, something that will 'fight' the tumours themselves, and hopefully either stabilise them so they stop growing for a while at least, or maybe even reduce them?), or is his treatment only 'palliative' (ie, to treat the symptoms only and make him comfortable). The doctors often are very 'loose' in their definition I find, alas, and that's why I say the key term is 'anti-cancer' or 'therapeutic' - often, because the doctors know that a cancer is 'terminal' they call all treatment 'palliative' simply because it cannot cure - BUT 'anti-cancer' or 'therapeutic' treatment CAN 'delay' even if it cannot cure.
A cancer diagnosis out of the blue (my husband had one too) is absolutely nightmarish, and one of the pressures is simply not understand anything about cancer (I didn't!), which is why I stress asking what treatment they are talking about, and what it will achieve if it works. It might be an operation, it might be radiotherapy, it might be drugs.
You will need to 'mug up' very fast for his type of cancer - what is his 'primary' - ie, where the cancer started (eg, lung), rather than where it's spread to, because that indicates what website you need to look up, to learn what treatment is offered. (Your husband is likely now to be deemed 'Stage IV' - or 'metastatic' because he has secondary tumours). That said, there is also a good website for brain cancer that INCLUDES secondary brain tumours - I will post a link.
The latest round of drugs can sometimes be used for 'stage IV' cancer, but it's often not know if they attack the secondary tumours, especially those in the brain - also, they are not always available for a particular type of cancer, or, shamefully, available on the NHS (yet). That's why you have to 'mug up' so much.
I would also recommend getting in touch with Marie Curie, as well as Macmillan, and also your local hospice charity. Please don't be too frightened by the word 'hospice' - it doesn't always mean 'the end', but it is good to think ahead to if your husband starts to need nursing care, which might be able to be done at home (it was for my husband, who also had secondary brain tumours - brain 'mets' as they are generally called)(for metastases - ie, metastatic), by hospice nurses. Your GP will also be involved in organising this if is is needed.
This is a very ,very frightening time, and I do feel for you. I can only say that what used to be considered 'terminal' is now, increasingly, being regarded as 'manageable' - ie, the trend is to try and keep the patient going with whatever treatment works to delay the cancer's progress, with as good a quality of life as possible.
You will see, though, that this is a time when your mum, whatever her problems, has to be 'handed over' to someone else to look after, even if that means a care home. How much do you think she will understand about what is happening to your poor husband?
Wishing you all that can be at this most stressful and distressing time- kind regards, Jenny