Hi,
Don’t know if I’m posting in right section as this is my first visit here.
I’m presently caring for my mum and dad who are divorced so live separately. I find this difficult but cope as they are my parents and this is what happens. Eighteen months ago my husband was diagnosed with advanced prostrate cancer this I’m finding almost impossible to deal with. We’ve been told that his cancer is life limiting so know that our time together is coming to an end he is only 62 and very optimistic I’m 60 and only seem to be thinking negative thoughts. I want to enjoy the time we have together but can’t stop crying which I know isn’t helping him. I feel useless and guilty all the time. If I’m with my dad I think I should be with my husband or mum and vice Versa Does anyone else feel like this?
I had counselling when, like you, I was torn between carees.
I would suggest that your husband is your top priority, and you will never forgive yourself when he is gone, that you put your parents before him. I’m widowed, by the way.
Tell us more about mum and dad. What do they need you to do for them?
(my son with LD is here at the moment, I’ll be back later)
I completely agree. I lost my husband to cancer some years ago, and my MIL was still ‘alive and well’ (dreadful for her, obviously, and she was already widowed too). But of course your husband takes priority. This time is PRECIOUS.
Please don’t give up hope for him entirely. These days, the dreaded word ‘terminal’ is less used (thankfully) than previously. ‘Then’ it was a case of ‘well, they’ve got a bit of time, but put your affairs in order and wait for the end to arrive’. Basically, if the docs couldn’t cure you (ie, you had early stage, operable cancer, where they could treat you and ‘get it all out’ or whatever) then you were just ‘written off’.
NOW it is much different with the docs - INCREASINGLY it is becoming a situation of ‘living WITH advanced cancer’ not ‘dying immediately of it’. Yes, it might still be classed as ‘terminal’ AS IN ‘not curable’ …but, as you are now discovering, it isn’t a question of ‘curing’ cancer, it is a question of ‘not dying from it soon’. After all, diabetes is not ‘curable’ (Type 1), but it is perfectly ‘treatable’.
The ‘good’ thing about having a cancer such as Prostate - one of the Big Four - is that there is a LOT of research as there are, sadly, a lot of patients, so drug companies, the NHS etc, put a lot of effort into getting treatments out into practice to sustain patients. It is, in the end. a question of ‘stepping stones’…can patients get to the next ‘stepping stone’ (new treatment as it comes out of trials, or is on ‘the list’ to move on to once one treatment starts to fail), before the cancer ‘outruns’ them.
So, please do bear that constantly in mind. That said, cancer treatment is always ‘ongoing’ and it is always ‘chancy’ and that is why, given your husband’s age (younger than me), you must focus on HIM, and your time together, not your parents.
It is not your responsibility that your parents are divorced - that was their choice, not yours. I take it they haven’t remarried or don’t have partners at the moment to help with them?
This may sound ‘harsh’ but it is true, for all that. Your parents are older than your husband, they have had longer lives than him. They have, in a way, HAD their life. Your husband has not. He is being ‘short changed’ compared with them. THAT is why your prority is him, not them.
What help with their lives do you parents need (not ‘want’ by the way - not always the same!)? And do they understand - and accept - that they do NOT come first with you now. I do hope so. If not, well, they have to ‘accept’ it, even if they don’t like it! Tough. Your husband ‘deserves’ more time than they do, etc etc.
And, if the worst comes to the worst with your husband, and you lose him, THEN your parents can have your undivided attention. Till then, no - they go to the back of the queue. End of. They should agree with me on this. Any ‘good’ parent would.
PS Are your husband’s parents alive still, and does he have any siblings, or children?
Hi Allison
Your body and subconscious mind are trying to tell you that you can’t do it all. And you are starting to mourn for hubby.
As well as the practical things mentioned earlier, I’d suggest a trip to your GP as I think a touch of depression has crept in (perfectly natural in the circumstances) and he may well suggest some mild antidepressants if only to help with the crying. I see it as just another tool in the box of tricks you are going to have to build to cope, and at this stage you should e.g. accepting all the help you can, from where ever
Xx
MrsA
Thank you everyone for replying I’m not alone. The replies were both helpful and I supppse confirm what I already know. My husband should come first.
My dad needs care as he is totally dependant but he has carers 5 times a day so really I should just visit rather than care. My mum is quite Independant regarding looking after herself but she needs or rather wants attention and seems to be jealous of the attention I give my dad and my husband. I think as said in one of the replies I should try and differentiate between want and need.
Thank you so much for replying I felt very low this morning and just up know there are other people around that listen and can give advise was do comforting.
I did try to approach my doctor but no help he just told me I should google counsellor and see if I could get help that way? Really felt he had just closed a door on me.
Sorry your GP was like that.
Maybe try another appointment with a different one?
If you Google CBT and your area it should come up with options for free CBT counselling, by phone, online or face to face (tho the wait for the latter is usually longer). I bet he didn’t say it that way to you!
I used the online service and found it good to take the edge off, but then decided to pay for more face to face.
There’s aways Samartians 116 123
And here’s our list of mood lifters
https://www.carersuk.org/forum/support-and-advice/carers-health-issues/positive-ways-to-cope-with-low-mood-12505
We, of course, are here too
That’s a disgraceful reaction by your GP - I can’t but hope HE/SHE gets to go through what you are going through! Then maybe they’ll develop some humanity!
At the very LEAST they should have checked if you are in touch with organisations such as Macmillan, not to mention the numerous support groups for Prostate cancer! They really are your best bet in terms of ‘carrying you’ right now, and I hope you do get in touch with them. I can remember that Macmillan has a very good Carer Forum on their community sites, so it’s worth giving them a look in. And the support groups I found for my own husband’s cancer was excellent - I’m still a regular penpal of an American lady I ‘met’ there, who also went through what I did. We helped each other ‘across the water’ and she was a great comfort to me, and I hope I was, and still am, now we are both widowed, to her.
Alison, you have a difficult road ahead, and your husband needs you to keep well.
If dad is having FIVE carers a day, that is unheard of in my area. Is he funded by Continuing Healthcare?
Has the time come for him to move into a nursing home? If you are the only thing that is keeping him from this, then I’m afraid the answer to this question has to be Yes.
As for mum, the more you do, the more she will want you to do, because she is thinking only of herself, when she should be thinking of you and supporting you. I was in a similar situation, the answer is to do less and less. So YOU decide how often you will visit, and when, NOT MUM.
If you say you will visit every Tuesday afternoon, to start with she will probably try and make excuses for you to come sooner, for some silly reason. Recognise that the only control she has over you is the control that you let her have, you are no longer a little girl trying to be good to please mum.
“My mum is quite Independant regarding looking after herself but she needs or rather wants attention and seems to be jealous of the attention I give my dad and my husband”
That she is jealous of the time you spend with her ex is her bringing her divorce issues into your life! Stay clear! As in, if YOU want to spend time with your dad, do so - whatever the rights and wrongs of the divorce originally they were not your responsibility. If you think your dad did nothing to deserve you cutting him for the rest of his life, then ignore what your mum wants etc etc etc. This is YOUR moral judgement on him, not hers! On the other hand, if you think your dad ‘did wrong by your mum’ way back when, don’t be swayed by pity for him now. Karma can take a long time to come around, if your dad ‘did the dirt’ on your mum to make her divorce him, then no reason why you should take pity on him now (even if he doesn’t think he did anything wrong originally!) (MANY ‘erring husbands’ seek to justify their own behaviour, and ‘can’t understand’ why their children blame them - eg, ‘Darling, I simply fell in love with another woman…it wasn’t my fault I left your mother! So can’t we all play happy families again?’ This actually translates as 'I got bored with your mum, another woman flattered me and I wanted more sex out of life than I got with your mum. So I dumped her and abandoned my kids. But I don’t want to feel bad about it so I want you to accept this as ‘normal’ and treat me lovingly blah blah blah)
NOT saying this is your dad, but if it IS, I can see why your mum doesn’t want you ‘forgiving’ him etc etc. But, it is YOUR moral judgement on him all the same - and on her, too.
However, what is a lot less ‘debatable’ is your mum being jealous of the time you spend on your husband with advanced cancer. Sorry, this is unforgiveable.
Hello all,
Thank you again for all the useful advise.
The situation between my mum and dad is difficult to explain so I’ll just say that even though divorced she still visits him. This can sometimes be helpful but other times makes things more difficult as neither of them has changed so still have the old differences.
My husband is brilliant and still wants me to be happy and tries to do things to surprise me. Sunday he booked tickets as a surprise to go to the ballet in our local town as he knows I’ve wanted to see a ballet and never managed to go. The problem is whenever we do something new together or celebrate an anniversary or annual event I can’t help thinking will this be he last time we do these things together, is this a normal feeling ( I hope so) .
Reading other people’s posts is upsetting but does make me understand that life can be both sad and brilliant at the same time. It shows that people can be so kind while going or already gone through difficult times they still find the time to help others., so thank you everyone it helps just to write my feelings down.
Xx
Alison, I do understand the ‘is this the last time?’ feelings - but I wonder if it would help to remember that, truly, NONE of us ‘know the day nor the hour’ as the Old Book puts it succinctly.
This time next week we could all ‘go under a bus’ etc etc. Nothing is certain in life.
I likened my husband’s cancer to us ‘surfing a wave’…neither of us knew when the wave would break, but while it didn’t, we ‘kept surfing’…
Seize the day - that’s another absolute mantra at these times.
Oh, and ‘don’t sweat the small stuff’.
Have you had a frank talk with your parents that your husband is very likely dying (however ‘long’ it takes, and I DO hope we are talking years, as really is becoming increasingly possible…). Remember, to your parents, cancer was nearly always a death sentence, so SURELY they can see you MUST spend as much time as possible with HIM, not THEM???
Thinking of what you have said about your feelings and emotions, there is a thing called anticipatory grief, which I think is what I went through with my husband when he was diagnosed with a tumour. I cried a lot, especially at times which made me think about ‘possibly the last time we will …’. I don’t know if that idea will help or hinder you; please ignore it if it’s no use.
On the practical side, what was the most help to me was that someone else lectured my mother, explaining very firmly that I could no longer support her as I had in the past and that she was not to complain. Is there anyone who can be this fierce on your behalf? It really did shock her into changing her ways and I am still grateful now.
I found researching ambiguous grief very helpful. Still remind myself that’s it’s part of what I am going through, especially when emotions and worries are high.
Alison, I’m sure those feelings are completely normal. Your situation is hugely difficult, I can’t imagine how hard it is to put a “brave face” on at times. Jenny has been on the same sad journey as you, there are always people here to offer support when you need to share something.
(Is Alison your real name? If so, can I suggest you change your forum name so you cannot be identified, for security reasons).
I completely agree about the ambigious, or preliminary - or even ‘premature’ maybe? - grief. We are ‘preparing ourselves’ for the worst, and it is truly like a vice crushing around our heart…
I also think Dusty is spot on with getting someone else to ‘lay it on the line’ for your mother, to make it clear to her that she does not come first now, and that it is your husband who takes priority. It just has to be said!
PS - an on that vein, if your mum loves you (or claims to love you), then her role now is to support YOU as you stand beside your seriously ill husband. Parents make sacrifices for their children. BOTH your parents should be doing that for you now, not thinking of themselves first.
Hello
I joined in January but only now have got a spare moment to post. I care for my mother who has vascular dementia who has entered residential care but I am still managing her financial and provide care daily when I visit her. What I find the hardest is lack of time to think and also friends and family want to know the details of how she is but will not help by caring or visiting her - they have to be bribed with chocolate. I have asked them straight out many times for help with visiting and being there for but they pretend they did not hear and change the subject.
Loretta, it’s glaringly obvious that the so called ‘friends and family’ are none of either!
They are not your mum’s friends as they can’t be axxxd to go and visit her, and for the same reason they are not YOUR friends either. Ditto for your waste-of-space relatives.
Tell them blumtly - and sharply - that if they want to know how she is they can damn well go in and see for themselves. Till then they have ceased to exist as far as you are concerned. They don’t give a stuff your mum, or you, so why give a stuff for them?
All they are trying to do is ‘salve their conscience’ by asking after her - oh, big deal. Go and take a running jump the lot of them!
And dont’ even THINK of wasting a gram of chocolate on them! They’re not worth it. They’re not worth anything.
Be tough on them - they are being tough on your mum, and you. Why give them the time of day?
Loretta, why are you visiting your mum every day?
One of the very few ‘blessings’ (if you can even call it that) of dementia is that at some point ‘time’ ceases to exist. Your mum won’t remember that you didn’t go in, and won’t miss you when you’re not there. It’s sad, but it does take the pressure off, at least.
Has she reached that stage yet do you think?
Loretta
Hello and welcome to the forum.
Can I ask what you mean by you provide care? I oversee my husband’s care, ( he is in a nursing home because of strokes and vascular dementia). I really do keep an eye on how he is being looked after, and make sure he has everything he needs. Also, I have learnt that to go every day was absolutely wearing me out emotionally. I visit every other day now, but am fortunate enough to have supportive family who also visit him. Sadly he doesn’t remember who has been.
Back to you. I honestly feel you should tell the family and friends that if they need to know how your Mother is, to visit and judge for themselves. It’s far too much pressure to be trying to explain, and maybe save the feelings and ease their guilt.
It’s a very sad situation we find ourselves in and shared support is needed, not just one being the prop.