Lost

So sorry to hear this. My wife received some similar news two days ago after months of tests and uncertainty. Also similar plans to retire. A thunderbolt has hit our family. 

We are in the numb stage of disbelief and sadness but I know we will find a new normal, but it will take time and tears. We will use Maggies which have support centres around the country. Janet Ellis (TV personality)  has a comforting video on there. She lost her husband to cancer. She is honest about not suddenly becoming superhuman and a perfect carer. You have to draw on empathy and strength but you can only be who you are. I am depressed and sad but I understand this and have to let it be knowing it is not me, just my mind and body processing this impossible news. Much love on your journey. We are not alone ️

Hey Africa2, Hey Flyme,

I'm so sorry to hear about your situations.  My wife was diagnosed with a brain tumour in Nov 2019.  The doctors were pretty clear from the outset that the cancer was incurable - though Fi held onto hope right up to the last (she died last December).

It's a really daunting place you are both standing in.  Lots of uncertainty about the future, lots of unanswered questions, fear and upset.  It's absolutely natural to worry about how you will cope as carer - and to worry about what comes next. 

As Flyme says, once you have recovered from the initial shock, life will find its new normal and you will get used to the patterns and rhythms of treatment.  And (assuming you are both UK based) there are loads of resources in this country that will swing into place when you need them (Maggies, local cancer trusts, Macmillan nurses, this site, ...). 

Being a carer is absolutely essential, absolutely heroic, sometimes very challenging, sometimes very rewarding, sometimes all of the above.  You will likely discover emotional strength that you didn't know you had. So I guess what I'm trying to say is... try not to worry about tomorrow.  Focus for now on today.  Then once things settle down you can look to some more longer term things.

I'm sure that medical professionals have been saying to you... make sure you look after yourselves as well.  This is a marathon and you can't sprint for months on end.  Try to carve out some time for yourself soing things that you like to do (go for walks, meet with friends, whatever, ...).  If you are to help your loved ones you need to look after yourself.  Try to find some trusted friends or family that you can share honestly with about how you are feeling.  Whatever the outcome, you are likely to need support, and cultivating that support now is really helpful.

As I say... I'm sorry.  None of us chose to join this community.  But we stand together - so feel free to ask questions or just vent on here.  You'll get a sympathetic ear and no judgment.

Big hug...

Pete

Thank you Pete. I am sorry about your loss but thank you for sharing this. It means a lot. Very wise and useful advice. 
Virtual hugs to you and anyone who can relate to this. X 

Thank you .... your message means a lot. 

I am in the same position, my partner of 32 years was diagnosed with cancer 3 weeks ago after suddenly losing weight and becoming tired. we are in early 60's. Last week we were told its terminal, she is at home now being cared for by me, I dont want carers in and out of the house all day long. I am struggling though. Its hard enough coping with the devastating news, let alone the hard work of caring. She is unable to walk much so has to be in bed all day, I am finding it really hard getting her on and off the commode and in and out of bed. I keep telling her I am worried about coping but she is like"oh you'll be ok". I am not sure I will be. And the range of emotions is startling, anger sadness, loss, heartbreak, self pity, pity for her, stress, exhaustion, the list goes on. Just helps so much to know you are not alone xxx

Thank you for this post x

I am so sorry to hear your devestating news. That sounds really tough for you and you have every right to feel all those emotions. At this early stage I’ve already learnt that no one can tell you how the feel and that everyone is different. The common thing is it is really, really hard. I understand your position and you must do what you feel is right. I my little experience of carers, they are generally lovely people and will help share the burden and provide you with some more strength. I expect when I get to this stage I will take one day at a time and try not to feel guilty about anything. Just remember you are not alone x

Hey Crystalwitch,

All of us understand the "not wanting carers in".  I've had this conversation with multiple people on this site.  I would say... just be open to it.  If you are having to help getting on and off the commode, I am a little concerned about your back.  The absolute killer is when you have to help someone to sit up in bed.  Especially if you don't have a hospital bed to do the manoeuvers.  Fi deteriorated very quickly - I guess not everyone does - it depends on the cancer.  And by the time we admitted we needed carers, we really needed carers.

They don't need to be in and out of the house all day.  It might be enough to have them come in in the morning to help you get her washed and dressed, or in the evening to help you get her to bed.  And that may leave you with the energy stores you need to do all the rest of the care.  We also found our carers incredibly helpful in advising when I could do things differently, or needed different equipment. 

I don't know whether you are worrying about cost, and I don't know what the criteria are, but we had a CHC (Continuing Healthcare) assessment (done by the hospice for me, I gather others have them done by social services) and they sorted it out with social care.  I had an initial consultation with the head of the care agency and then carers started appearing (initially once a day).  I didn't have to pay for anything (one of the many reasons I am grateful to live in the UK).  

If your partner has been told it is terminal, have you been given a referral to palliative / hospice care?  I would encourage you to engage early there as well.  It feels like a big step - but our local hospice was absolutely invaluable in enabling me to continue to care for Fi at home.  They helped me to fill in forms, sorted out carers, OTs to advise on equipment and home modifications, sent round nurses when we needed them, and provided me with a helpline that gave me the confidence I needed to keep caring for Fi at home.  I couldn't have done all that I did without them.

As previous post... you are going to need to look after yourself.  A wise GP advised me that if someone offers to help "just say yes".  I'd encourage you to let family, friends and neighbours know what is going on since it is really helpful to have people looking out for you a bit.  Again, I couldn't have looked after Fi without all the help I had.

Monologue over... I hope this doesn't come over as too preachy... I don't know your situation and you are very able to work out what works for you.  Just trying to look after you. 

Big hug...

Pete

Thank you Pete, I really appreciate the advice. She is very weak and unable to walk so has to remain in bed as much as possible, her feet are really swollen from water retention, she says she feels like she is paralysed. I am ok with what needs doing, getting her sitting up, settling down, getting her meals/meds etc, Even if carers came in for example to get her onto the commode, it is likely she would need to use it in between times anyway. We havent been put in touch with any hospice care, only the community nursing team. x

Hi.....  I am devestated for you.  I am of the belief that things shouldnt be set in stone .... if you dont need carers at first then fine .... but be open to them ... especially as you are worrying about not coping.   Has she been given anything for swollen legs? ..... reducing the water retention could help her mobility.