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Caring for mom and partner - Carers UK Forum

Caring for mom and partner

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Hello
I'm new to this forum and at my wit's end please can someone give me advice.
My mom was diagnosed with bone cancer and given months to live that was 3 1/2 years ago. My wonderful partner supported me and I moved in with my mom to care for her, she also has psychotic depression. I do everything for her as she has very poor mobility, we have carers but she she needs 24/7 care which I provide.
My wonderful partner was diagnosed with pancreatic cancer in February this year I moved him in with mom & me as mom has a ground floor flat. He has now deteriorated to a point of barely eating, confusion and sleeping a lot.
My problem now is mom is refusing to go in to respite and wants my partner to go home. Mom is adamant she can stay at home alone with Carer visits 3 -4 times a day, she can't.
I have no family who will help me, my sister refuses to help even though she knows the situation.
Can anyone please advise me if they've been in this situation. I'm at my wit's end and not coping
I have no real advice to give you, but just wanted to let you know that I'd read your post and felt your pain. I can't imagine what you're going through, that's far too much for one person to have to deal with. I hope others will be along with more practical advice, but stay strong. Sending you big hugs.

All the best.

Emma
You are in a dreadful situation, however it is mum's home first and foremost. I would suggest asking Social Services to do a Needs Assessment on mum AND your partner. Have they both claimed Attendance Allowance/Disability Living Allowance/Personal Independence Payment?
Are you receiving Carers Allowance? Who is supporting YOU? I'm really concerned that you are being pulled in all directions by two people with potentially fatal conditions.
I think it might be best for you and your partner to go back home and enjoy the remaining time you have together. I understand perfectly that mum thinks she can cope but won't. Without you there she is much more likely to get help from Social Services, and will ultimately move into residential care.
SS will do a financial assessment - is mum's paperwork in order? Has she signed a Power of Attorney? The same applies equally to your partner. If you are prepared to help them, the least they can do is make things as easy as possible for you.
As for your sister - the forum has a name for family who seldom visit - Helicopters! They just drop in, like a helicopter, complain, give the benefit of their wisdom, and then disappear quickly. I had two brothers like this.
Hope that helps, come back here as often as you need.
Hello Lost and welcome to the forum.
What a bad situation for you. I'm really sorry. BB has given you some good practical advice.
Why is Mum 'sending' your husband home. Is she being 'nice', in that she wants you to look after him instead of her and thinks you should have some time together?
Or is she being selfish, wanting him out of the way and you to concentrate on her alone and is using the 'I can manage' in a martyr-ish way, expecting that to blackmail you into staying with her?
I don't know the relationship you have with your Mum but based on the few facts you have given, what I would do is concentrate on my husband.
I would tell Mum that this is what you have to do now and that if she won't go into respite then you will leave her to it. (And mean it).Tell her that it will make your life much worse if she won't have respite and that she owes it to you, after all your care to help out as much as she can by doing just that.
If she won't help you, after all you have done for her, including giving up those years when you could have been with your husband for her sake, then I would take hubby home and tell Social Services that you are not caring for your mother for the foreseeable future and that it's up to them to make arrangements.
Either she will be able to cope, or she won't and maybe a few days of trying will make her change her mind about respite or SS will have to take over and sort her out.
As for your sister, if she won't pull her weight with Mum, considering what you are going through, then some sister she is!
Your lovely husband more than deserves your full attention while he is battling this. You deserve to have as much time with him as possible.
Your Mum can be looked after by others and do fine.
It's a horrible choice to make, but actually, in my opinion there's only one right choice and that's your husband.
Keep posting.
Elaine
Hello Lost
What a dreadful situation to be in. I do agree with BB and Elaine. Your husband really should come first. My hubby is in a nursing home and how I wish he was with me. I'm sure you care for your mum. Respite for her would help you such alot. You will be Ill yourself with all of this trauma. I'm so sorry you have such alot of emotional pain
( Hug)
I know 'some' of what you're going through, as I lost my husband to cancer some years ago. But I didn't have a terminally ill mother with severe depression to cope with at the same time....

I'm afraid I agree with the others - it is your husband/partner who is the priority, and not your mum, and he needs your focus.

So, I would say two things are possible.

IF you and he have a home of your own, and he is physically capable of it, then go back home, the two of you, and get all the care you can for him (see more below). Leave your mum in her own property, alert SS you are withdrawing care apart from, say, an occasional visit (eg, if your partner is asleep or whatever)(not sure how far away your own home is of course). Either she will cope, as she says she can, with carers coming in, or she won't, in which case the SS will probably just move her into residential care or a hospice anyway. BUT, most importantly of all YOU STAY OUT OF IT!

However, if your partner can't really cope now with moving back to your own home, then stay on in the flat at your mum's property, but, again, WITHDRAW YOUR CARE FOR HER!

The essential bit is you NOT providing ANY of her care (other than occasional social visits - NOTHING ELSE).

On absolutely NO ACCOUNT continue with her care and on even more absolutely NO ACCOUNT allow her to separate you from your partner.

It's essential you now devote yourself to him, for whatever time he has left.

As for your mum, she must do without you. Yes, I guess there's a chance she may possibly pre-decease your partner (I would hope so, in a way, as in, I hope he survives a lot longer than she does). You say she has bone cancer, but is this a primary bone cancer (very rare in adults, so I understand??), or is it from a primary elsewhere (eg, breast cancer that was successfully treated some years ago) that has now resurfaced as bone cancer (ie, secondary cancer).

Whichever it is (and, I believe that secondary bone cancer can be slow growing, hence the longer survival times she's had than originally thought), I would ask her GP outright what her likely life expectancy is now. Is she still having 'anti-cancer' treatment for it, ie, drugs or radiation etc etc that reduces the amount of cancer in her body, or is she on 'palliative only' treatment, ie, to keep the symptoms/pain at bay? (This will give you a clue as to what the doctors think of her life expectancy)

More importantly, of course, how is your partner doing? As you probably bitterly know by now, pancreatic cancer is one of the most dangerous of all cancers because it is nearly always found too late for curative treatment (the even more bitter irony is that, found early - usually by chance - it can be very curable/treatable......)(true of most cancers alas.).

I hope you are checking out the various pancreatic cancer support groups and charities etc, to find out what the latest treatments are (remember, new drugs for cancer come on stream all the time, though many, shamefully, are not available on the NHS - they may not cure, but they extend life, sometimes by a considerable margin over the doctor's prognosis). You may have to PUSH HARD to get hold of those treatments, and ensure your partner is with an oncologist prepared to treat his cancer aggressively (some advise 'go home and make your peace' etc)(which, yes, sometimes, is really the only option left - and yes, some patients chose that course because they don't want to go through unpleasant treatment that is difficult to endure, rather than make the most of what time is left to them.)

Finally, please do get in touch with your local hospice if you have not already done so. Hospice-at-home care may be available (it was for my husband), and the hospice nurses are usually wonderful. Good 'end-of-life' care can make a heartbreaking situation just that little less agonising to bear.

I do feel for you - this is an unbearable situation for you, but I do most heartedfeltedly believe that this time you have now with your partner must take priority, and that it is a time that will tear you to pieces.....but light the rest of your life with precious, precious memory. Make the most of every moment you have with him. Even when he's asleep, or 'out of it'. I used to sit beside my husband as he lay on his side of our bed, and hold his hand, and read, and have a cup of tea, and just 'be with him' as he slid towards the end, day after day......

It was heartreaking, but I poured my love into him, and he was never, never without me or one of his family.

(And speaking of families, your sister is a piece of work, and to be honest, I would write her out of your life - if she can't rally round to support YOU at this time, let alone her mother, she isn't worth a brass farthing!)
Thank you so much to everyone who has responded, it's humbling to have you take the time in your busy lives to respond to my problems. Social services are involved with Mom but there not much use due to there ever bulging case load. Funding is in place for 4 weeks a year respite and I'm hoping a bed will come available for mom and that she will see sense and go. Other than tending to moms personal needs and cooking etc that's all I'm able to do for her now, I resent her
I guess that makes me evil. She has secondary bone cancer from breast
I wish I was married to my partner but it's something we decided against years ago. He is so scared and thinks going to our home means he'll die, I know what going home means as well. I would put myself in his shoes in a blink of an eye he doesn't deserve this, who does though. We have a hospice at home nurse who sees him at Moms but over where we live there is no H@H service though I believe the local St Mary's has visiting nurses.
As for my sister I wrote her off years ago, I've maintained a polite relationship for moms sake but my god when something happens to mom she won't know what's hit her.
Thank you again for your comments I'm sorry I'm rambling x
Ramble away! (I was probably certifiable when my husband was diagnosed!)

May I ask what YOU would like to do in this situation which is so, so painful for all of you? Where do YOU want to be? Would you rather be at home (your own home) with your partner, and cope without H@H? (I would recommend talking to the hospice yourself, asking them how 'the end' is likely to come - though of course, it doesn't always happen in a 'medical text book' kind of way). If you go back, or stay at your mum's, what happens to his oncology appointments, if he still has them (as I say, has he been handed over to palliative care, as that usually has a consultant of its own).

But if you think you'd rather both stay where you are, at your mum's, then it MUST only be on the basis that you withdraw your care from your mum. It's up to her whether she goes into respite or not, but while you are looking after her, then, brutally, she won't. Don't expect her to suddenly start thinking of you and your partner (by the way, is she saying that she wants your partner to go home, but not you? ie, are you supposed to abandon him and devote yourself to her instead?)

I do think that wherever you are, it must be where you and your partner want to be, and your mum has no say in it at all. If she says something like 'well, you can't live in my flat if you're not going to look after me!' then simply say 'We've already done years of looking after you, that's quite enough 'rent' we've paid you, and we are staying here, rent free - or pay her rent - or whatever......the point is she has to lump it, and so does your sister. I mean, for heaven's sake, how cruel can they be??? (!!!!!)

Resenting your mum does not make you evil, it makes you human. It's ridiculous that you do things like cooking for her, which can easily be done by someone else, or be provided for her in respite. Why does she not want to go? Does she suspect you won't let her home again? (and that is something you DO need to think ahead to - respite is temporary - what happens when it's over, does she stay there, come home, more careworkers for her, etc etc etc.)

You say you'd like to be married - is there any reason why you should not? (Remember, marriage can complicate matters in terms of inheritance, and if you have children by other partners, so has to be thought through with that in mind). But if you don't want a formal marriage, why not look out to have some kind of 'blessing ceremony' which can be done at home, wherever that is, and probably designed around your own needs and preferences.

Finally, not sure if you are on cancer websites, but as well as the Pancreatic Cancer ones, check out Macmillan Community Forums, as there are sections there for carers, especially when facing the loss of their partner. I found them a great comfort.

Wishing you as well as maybe - it's a cruel, cruel disease, no doubt about that, and blights lives and hurts hearts.
Thank you all for your responses and in reply to some points raised. Thank you jenny I honestly don't know what I want everything is so messed up and my head just wants to explode. I think we would be better in our home as he has a daughter and son in law who live close to our home. It's a 40 mile round trip from home to moms. Because of moms mental illness she would make it impossible for me to give up caring for her if we were here, we're barely talking at the moment and she can be so cruel and cutting, I dread her seeing my partner incase she tells him he has to go. I really wish I was hard enough to walk away completely.
Both of us have been married before and marriage was something neither of us wanted, I might just change my name by deed pole but that is a trivial thing.
Do I want to come back to caring for mom when my partner passes away - I don't want to even think about living. I sound so full of selfish pity who am I to moan when there is so much to sort. Sorry for this I'm never this self pitying usually
The only power mum has over you is the power you let her have. Next time she says she wants you to go, GO! Any reasonable mum would want her children to thrive, you have become so accustomed to her abuse I'm not sure you realise just how bad it is. A compromise might be you and your partner having a short break away from such a poisonous atmosphere? My husband and I were married for 34 years without having a "slanging match" and so I've had rather a sheltered life in some ways, but it's taken huge courage to bring up a brain damaged child.