Mumsnet has not checked the qualifications, experience, or professional qualifications of anyone posting on Mumsnet Talk and cannot be held responsible for any advice given on the site. If you have any serious medical concerns we would urge you to consult your GP.

Sick mum, sick husband, full time job, two children. WWYD?

(86 Posts)
gaelicsheep Fri 06-Dec-13 13:15:10

I will try to be brief. Mum is extremely ill, has cancer and we fear is about to receive a terminal diagnosis. Mum and Dad live 4 hours away (and a nightmare journey at that). DH is also now ill, needs urgent endoscopy for suspected internal bleeding - possibly an ulcer, but God knows and extremely worrying. DH looks after two young DCs, one of whom is only 3 and just goes to nursery for two short days a week. DH so tired and unwell that he really isn't fit for doing this. And then there's me - trying to hold down a 40 hour a week job and not doing a great job of it at the moment. Have talked to work - repeatedly, as I've had my own heath troubles - and have the distinct sense that they are starting to lose patience with me.

Result, I feel torn at least three ways. What on earth do I do? Where do I start in picking my way through this? Feeling very very down today, sorry.

gaelicsheep Fri 06-Dec-13 13:16:33

Oh, and Dad is also unwell - has been all his life - and probably won't cope with caring for mum, just to add to the situation.

Golddigger Fri 06-Dec-13 13:19:35

Have you other relatives that you can call on to help?

gaelicsheep Fri 06-Dec-13 13:20:46

I have a DB, currently abroad for work. My dad's sister lives close to them, and it's a blessing knowing that, but she works full time (all hours god sends) as does her other half. There's no one else any closer than me.

HaPPy8 Fri 06-Dec-13 13:22:41

How long is your DH expected to be ill for?

gaelicsheep Fri 06-Dec-13 13:22:45

And unfortunately no relatives anywhere close to us to help out with DH and children.

GoodKingWencesLACK Fri 06-Dec-13 13:23:00

Aw, chin up sad It sounds really tough.

Is your DM getting support locally? through MacMillan or Marie Curie?

Could your youngest get more nursery provision? Is he at school nursery? Ours do extended care, and if there is space they can go five days a week if necessary (and is cheap at £12 per half day session)

Is there any support you can call on locally yourself? local children's centre, or carer's service? friends? Could you look at reducing your hours, even temporarily? Would that be financially viable?

I am a care worker, and though it's predominantly elderly, we have had a few short term contracts where an ill parent got help through social services. We would go to help with bathing the kids and getting them ready for school/bed etc. They were generally single parents though.

gaelicsheep Fri 06-Dec-13 13:24:14

God knows Happy8. I am trying not to panic, but of course I'm terrified they will find something worse than an ulcer in the scan. A bleeding ulcer is serious by itself of course. He has been so unwell for so long, he has severe migraines, pretty bad depression, and of course this is making all that worse. Thank God I made him go to the doctor about his tummy troubles, which have also been going on for some time. Seems like a ticking time bomb.

Timetoask Fri 06-Dec-13 13:24:57

OP, that sounds extremely tough.
Could you apply for some months of sabbatical from work until things get better? Specially your DH's health?

Could you parents move near you? Get help near you? So that you can keep an eye but be able to continue looking after your family?

Golddigger Fri 06-Dec-13 13:25:27

You need all the help you can muster. Whether that is neighbours, or a second cousin twice removed.

GoodKingWencesLACK Fri 06-Dec-13 13:27:44

Your Mum and Dad at the least should get in touch with the local council's adult services for an asssessment of their needs by a social worker; even if it's just carers in to prepare meals a couple of times a day or do their shopping. It's means tested, so they may have to make some sort of contribution.

There is help out there for your parents; if they are happy to access it, and I know that some people just aren't as it is quite intrusive allowing carers into your home at first.

3littlefrogs Fri 06-Dec-13 13:27:55

Have you asked about carer's leave?

Does your work have a HR dept? Are you in a union?

Maybe CAB could advise?

My friend was in this exact situation - she was in the civil service and they did have a carer's leave scheme.

Floralnomad Fri 06-Dec-13 13:28:31

Speak to your GP and see if you can get signed off with stress for a few weeks so that you can get your head around what to do .

gaelicsheep Fri 06-Dec-13 13:28:36

There is no support organised yet for my mum and dad. We need to get this latest set of results really (due next week) but she really is ill - it's dreadful to hear her getting worse and worse whenever I speak to her. I need to be able to get up to see them, but I'm frightened to leave DH with the children and I can't take the kids with me the way things are for mum and dad at the moment. My Dad is also fiercely independent which doesn't help, and will probably run himself into the ground before accepting any help.

Reducing hours is not an option - no - we need every penny, especially at the moment when we're looking at extra long journeys etc, plus I don't think work would take it kindly at all. Our nursery is probably about £12 per half session as well, but that certainly mounts up! That is my next port of call, to see about putting DD in for more days. We'll have to see how DH gets on. I have managed to get agreement from work that I can leave at 4 if DH needs me and make up my hours working from home, but that gets so tiring by the time I've sorted out the kids and tea and DD has finally gone to sleep. I don't get down to working until at least 9pm.

Artandco Fri 06-Dec-13 13:29:34

Can the nursery take youngest longer? They might give you a temp contract rather than termly of you explain the reasons ie dh in hospital. So could sign up for 2 weeks full time.

Or can you afford a nanny temporarily? 2 weeks would help wouldn't it? A nanny/ housekeeper might be happy o run errands for your parents on the mornings youngest is in nursery and would help with childrens things in house ie their food and bedrooms and clothes.

3littlefrogs Fri 06-Dec-13 13:29:58

I agree that your parents really need to contact SS and MacMillan to get advice and support. What would they do if they had no family?

HaPPy8 Fri 06-Dec-13 13:30:29

Its very difficult to make plans when you don't know what to expect, i feel very sorry for you. Some good ideas above, Im not sure i can think of any other suggestions. I hope your family is well soon.

bigbrick Fri 06-Dec-13 13:31:11

You are putting food on the table and this needs to be done. If you didn't have your job it would be a problem to all. So you keep going to work. Your dh needs to rest up it sounds and hope he'll be ok. Can you pay for someone to look after the kids at home whilst you are at work? When I was unable to look after my kids because of medical reasons we asked for help at home from someone who had worked at the creche my youngest went to some mornings.

gaelicsheep Fri 06-Dec-13 13:32:11

Oh dear, I do sound negative, but the thing is I can't afford to get signed off because I've used up the paid sick leave for the year. It's a rolling sick year and I had a bad bout of flu early last year, meaning that's my paid sick leave gone until at least February. Also I'm really afraid that would put my job at risk. It's a small private company, nothing like a carer's policy unfortunately.

Thanks for all the suggestions though. It is helpful getting other's points of view, who can look at things a bit more dispassionately.

PeterParkerSays Fri 06-Dec-13 13:32:36

Do you have any annual leave available, or is it all earmarked for school holidays?

Is there anyone you could stay with who lives near your mum and dad, so you can be up there but not in their house?

Artandco Fri 06-Dec-13 13:35:25

Can the nursery take youngest longer? They might give you a temp contract rather than termly of you explain the reasons ie dh in hospital. So could sign up for 2 weeks full time.

Or can you afford a nanny temporarily? 2 weeks would help wouldn't it? A nanny/ housekeeper might be happy o run errands for your parents on the mornings youngest is in nursery and would help with childrens things in house ie their food and bedrooms and clothes.

YoucancallmeQueenBee Fri 06-Dec-13 13:37:43

First of all sympathy, I have lived through a not dissimilar period. You will get through it but it will be tough.

First of all, it sounds as though your job is really important, as it is what keeps your whole family supported. You are going to have to make some tough calls on your priorities here, but always bear that in mind. Your job is important.

Secondly, I'm sorry your DH is in a bad way but can you encourage him to take a bit more responsibility for himself. I noticed you said that you made him go to the doctor - why are you having to do that? Can you have a chat to him about stepping up and supporting you a bit more?

Now to your parents, you need to encourage them to get support and get organised. How much income do they have? How sensible and together is your Dad? Having just gone through a diagnosis of cancer to death and out the other side of one of my parents, I would say that the support from the NHS was not great, not awful, but not great either. Do a bit of research on local caring agencies, you probably won't need to get in touch with them yet but it would be good to have their number in case you do need to. They are not cheap but can offer short bursts of help at an hourly rate, which may not break the bank either. Find out what charitable support & local authority support your parents may be entitled to as well. Once you have a terminal diagnosis, your Dad can get attendance allowance & he should be able to get council tax discounts too.

You will have to be a bit hard sometimes & just set your priority for that day / week & focus on that. No fairies or magic wands to wave - sorry.

SinisterSal Fri 06-Dec-13 13:39:04

I would see if any reliable local teenager wants some posket money after school a couple of afternoons a week. Would give your husband a break, you could maybe power through stuff at work til late without worrying, which might soften their cough for when you need to leave early on other days.

YoucancallmeQueenBee Fri 06-Dec-13 13:40:09

Also, not sure how many bedrooms you have in your house, but an aupair is the cheapest form of childcare. Might be something to consider.

cate16 Fri 06-Dec-13 13:42:44

What sort of childcare is the 3y old in? I run a preschool, and in cases like yours we would provide any extra hours possible - so if a another child is off sick/holiday your child would be given the space temporarily.
Cost wise we would come to an 'arrangement' depending on various situations - each case would be different.

oscarwilde Fri 06-Dec-13 13:43:18

Hi OP. I'm really sorry about your Mum, that must be really tough.

Can you ask your DB for financial help if he can't be physically present? Can he contribute towards some home assistance for your parents or a subscription to Cook! if nothing else? Is he making an effort to Skype etc to take some of the pressure to be in regular contact off you.
I think you should put him in the picture as to how difficult it all is at the moment, and your Aunt too. She may work all the hours that god sends but she may not need to. Simply telling her that your DH is also quite ill and you are frantically juggling but cannot / will not be allowed time off work at present might help.

Re your DH. Cross one bridge at a time and don't envisage the worst. Does your DD get any free hours from the state? Are you even in the UK? Do your friends and your kids schoolfriends parents know about your Mum. Would they offer lots of playdates if they knew?

helzapoppin2 Fri 06-Dec-13 13:44:03

I'd target your dads sister for some extra help as they are near to your parents. Explain your situation to her. She may be able to get some slack in her work and sort out help for your mum and dad. Or, maybe talk to your parents GP. You can't do it all yourself. Then you can concentrate on DH. Good luck, by the way, it sounds a really hard situation.

AcrylicPlexiglass Fri 06-Dec-13 13:44:31

Could you find a full time nursery or child minder spot for the little one and claim child care vouchers/tax credits etc?

ParsingFancy Fri 06-Dec-13 13:47:24

Are your parents getting DLA or Assistance Allowance (depending on age)?

Because your DM has cancer, she may be eligible automatically for DLA, and even if she's not in the automatic category, Macmillan will help her claim.

The parts of DLA are called "personal care" and "mobility", which may make it easier to overcome DF's refusal to accept help: "This money is for paying someone for personal care." Macmillan may also be very experienced in beating stubborn people round the head persuading families to accept help.

mrscog Fri 06-Dec-13 13:50:03

OP my immediate thought is 'gosh if this person lived near me I'd want to help them'. Have you considered posting on the MN Local boards to see if there are any local babysitters/people who could watch the children for you etc? There's the normal talk boards and the friendship bench. You could live almost next door to me for all I know and if you did I'd be more than happy to help with small things to help. You can also name change for Local so it completely removes you from any posting history on here.

Obviously encourage your parents to start to access whatever help is available. My uncle died of cancer this year and he was offered lots of practical help from Macmillain etc.

Have you tried writing everything down? Put together a timeline of your DH's appoitnements, when you find out your DM's results, anything else you must do, things you need to do. It then might feel easier to take each day as it comes.

Do you shop online? Could you help your parents out remotely by doing their supermarket shop for them and getting it delivered to their house? It's only a tiny thing but I'm sure anything and everything you can do will help.

I also think you need to ask your brother to plan a trip back asap to help ease the burden on you for a few days.

I think, given all the other stresses you are possibly right in trying to keep your employer happy - losing your job on top of everything else will be another strain.

Hope your DH is able to recover quickly and you can find ways of easing your burden.

AngelaDaviesHair Fri 06-Dec-13 13:55:58

Please do get in touch with Mcmillan nurses in your parents' area. They have been a godsend to my parents, and provide an urgent care service so that at least there would be someone to call for night time emergencies.

All the Social Services forms etc are a trial but there is assistance available. ONe does need to really push for it though. Unless you and your parents are quite activist, nothing will happen for them.

Similarly, you and your DH
may just have to push and push and demand for his treatment and appointments to be speeded up because of your family situation.

gaelicsheep Fri 06-Dec-13 13:56:59

Thank you so much everyone. Must get back to work, will pop back later. :-)

gaelicsheep Fri 06-Dec-13 17:19:42

Right I've knocked off for the day. Had quite enough. My parents are the total opposite of activist I'm afraid. They are of the stoical, put up and shut up generation. I will have to investigate things for them, but investigate I will. I will also have to point out to my dad - he will be the most resistant one - that if they don't take up any help that is available then they are actually being rather selfish because the burden (psychological, if not always practical) falls on me. In the nicest possible way, of course. But I think I do need to go and see them to determine how things really are. I do have a neighbour who's a friend and who I'm sure would keep an eye on things at home and let me know if there were any problems.

Yes I do think I have to keep my employer on side, it's pretty crucial for us really. I hope that as long as I am seen to be doing my level best, and doing it well, then they will forgive the odd wobble. I don't see how one can avoid wobbles in these circumstances.

I think Christmas is making all this seem harder. I'm trying to get enthusiastic about Christmas for the kids' sake, and also not least because my Mum and Dad are spending it with us. But because we don't yet know what we're facing, I don't know if Mum will have started chemo by then for example, I am just feeling pretty numb about the whole thing, and then I feel like I'm letting the kids down.

ParsingFancy Fri 06-Dec-13 17:25:41

You've hit the nail on the head about it actually being selfish of your parents to refuse "help" - because they're not actually refusing it, they're just expecting you to do it.

Do you think DF will respond to talking about your fears for your job?

I'm sorry, this is all so dreadfully hard.

gaelicsheep Fri 06-Dec-13 17:30:15

I can't know how they will react if and when the bad news comes - I don't even know how I'll react. I feel mentally prepared but it's all theoretical, I can't have even begun to deal with the emotions apart from the initial shock at the suspected diagnosis. So far I keep hearing from them, oh they're managing, they don't need me to come up, I'm too busy, I'm needed here, etc. etc. And that is all true. I am very busy and I am needed here. But as I said before I feel so torn. And yes they probably are managing - just - but at what cost. If my Dad makes himself more ill how is that going to help anyone?

I fear that if I raise concerns about me and my job they will say they don't expect me to be able to help on a day to day, or even week to week level. But I'm their daughter, if I don't, who will? I don't think they really think about that side of it - about how not being able to help and knowing they are struggling actually makes me feel.

twentyten Fri 06-Dec-13 17:41:27

What about speaking to your local Macmillan people about ideas to help? They deal with this all the time. You need support. Good luck. Depending on the area there are wonderful hospices who can offer all sorts of help and respite/ day care. Carers association?
Be kind to yourself. Teenage babysitter/ student a good plan.

twentyten Fri 06-Dec-13 17:42:31

Talk to your gp too - they often have social services links and you are a carer. Good luck.

Talkinpeace Fri 06-Dec-13 17:49:00

I am not normally in favour of financial imprudence and borrowing, but there are times in life when being there for people is more important than money. Credit cards have their uses.

Go into work on Monday and ask for 1 month unpaid leave.
Tell the mortgage company (face to face or by hand delivered letter) that you need a three month holiday on your payments.
Shift all expenditure that you can onto the credit card - if needs be explain why to them and they will up your limit for 6 months.

Then spend the rest of December and until the start of next term being there for yourself and your family

You only have on set of parents and one DH
they need you now
all else can be sorted later.

GoodKingWencesLACK Sun 08-Dec-13 01:04:06

How are things today gaelicsheep?

I understand totally about trying to be enthusiastic about Christmas. My mum started her chemo (for non hodgkin's lymphoma) about 10 days before Christmas so it was a bit of a washout that year as she felt quite ill from the side effects.

LEt us know how things are going xx

gaelicsheep Sun 08-Dec-13 12:14:39

Hello everyone and thanks ever so much for your kind thoughts. Still the same really. In limbo waiting for mum's results and DH's appt. We will have to ring up about the latter if no letter in the next couple of days.

Very interesting food for thought TalkInPeace. I think we're not quite there yet, but I certainly am keeping the option on unpaid leave at the back of my mind.

It helps so much knowing that there are people out there who understand. Thanks again. xx

Talkinpeace Sun 08-Dec-13 15:57:43

gaelic
have you got the whole of the Christmas holidays at home?
Talk to your bosses (the higher the better)
point out that you can do email a couple of times a day and booked skype when needed, but you NEED to be based at home till January.
If they are professional, and you make it clear that this is in their long term benefit (which it clearly is), there should be no hassle.

One of my colleagues is home working at the moment. She happens to be recovering from an op, but making the project home based means that SSP and everything else is far simplified : and she can go to all her kids school crimble stuff, no stress
in the long run we'll get more out of her by treating her well when she needs

gaelicsheep Mon 09-Dec-13 13:21:39

Hi. The home working thing is a no go unfortunately, other than making up hours as mentioned earlier. For a start you're not supposed to work from home if you have dependents there, which rules me out straight away. And then I'm in one of the roles considered "unsuitable" for home working, despite the fact that I spend half of most days dialled in to servers on the other side of the country, which can be done from anywhere of course. Of course many colleagues in different departments, including my boss, seem to work from home for much of the week and at the drop of a hat. C'est la vie.

But what I'm really feeling here is that somehow my DH's role as the main carer of our children (much as it pains me to admit it, he is) is not being taken seriously. Am I wrong to feel that if the boot was on the other foot people (by whom I mean doctors and employers) would be more understanding about a mother, partially incapacitated through illness, at home with two young children? Maybe that's not the case, but it does feel like people don't think he really has sole responsibility for the children for up to 9 hours a day, but that somehow I am magically there by proxy and therefore it's OK to ignore his needs.

That's probably unreasonable, but that's how it feels right now. I suppose the other thing as that many people are lucky enough to have family nearby to pick up the slack, and we just don't. Anyhow, DH was better yesterday and still seems better today - I've a feeling he's putting on a brave face for me, as I'm sinking fast just now. We'll take it a day at a time for now.

gaelicsheep Mon 09-Dec-13 13:23:18

Also my boss's approach to this seems now to be really hard on me, abrupt and piling on the work. I guess he thinks it will take my mind of things, whereas actually I'm just really feeling the pressure at the moment. :-(

lisad123everybodydancenow Mon 09-Dec-13 13:35:18

Message withdrawn at poster's request.

gaelicsheep Mon 09-Dec-13 13:55:29

Sorry to hear you're in a similar position lisad. With DH this comes on the back of a myriad of other as yet unresolved health worries, not least an unexplained collapse earlier this year, so I guess that's why I'm so concerned about him. He hasn't been fit and well for a long time and this is just the latest spanner in the works.

But you're right of course. I need to focus on the situation on front of me, and I am trying - honestly! School holidays are looming, and I need to work for half of them, so that's number 1 thing to address right now.

lisad123everybodydancenow Mon 09-Dec-13 15:03:05

Message withdrawn at poster's request.

gaelicsheep Mon 09-Dec-13 15:17:07

Sadly here in Wales it's only 10 hours, but of course you're right. It's obvious you've been going through similar as you have a very can-do attitude. Unfortunately my own health issue I mentioned is generalised anxiety disorder, for which I am being dosed and counselled (well hopefully if the appt ever comes through!) I'm soldiering on though smile

lisad123everybodydancenow Mon 09-Dec-13 16:16:05

Message withdrawn at poster's request.

gaelicsheep Wed 11-Dec-13 21:27:30

Thanks Lisad.

Right, well we have mum's results. Not as catastrophic as we feared - it has not gone to her liver - but there are secondaries in at least two other locations so its in her bloodstream. They are talking about chemotherapy being actual treatment, rather than just slowing progress - I'm not sure whether to be heartened by that or not. Unfortunately the nature of her particular disease, and the horrifically low 5 year survival figures even when caught at Stage 1, makes me feel quite pessimistic about the chances of success. So now we await a treatment plan.

Meanwhile, true to my fears about the Welsh NHS, they are trying to fob DH off with a clinic appointment (ie pre endoscopy) in January. So much for an urgent referral to be seen within two weeks. This terrifies me - what if he's one of the unlucky ones with something more sinister than an ulcer and they turn round and say they found it too late. I've heard of that happen to too many other people, it terrifies me. So it will be back onto the GP tomorrow to try and get her to put some pressure on and persuade them that an urgent referral with red flag symptoms warrants actually being seen urgently. Aaaargh.

gaelicsheep Wed 11-Dec-13 22:40:59

I take it back. From what I've just been reading - I don't want to go into details on a public forum - it is pretty catastrophic unfortunately. :-(

AngelaDaviesHair Thu 12-Dec-13 00:24:02

So sorry to hear that gaelic.

twentyten Thu 12-Dec-13 07:14:57

So sorry. Get hold of Macmillan- they should be able to help.Students are home for christmas-could you advertise for one to hel;p with childcare? Look after yourself too.Your job is to arrange,not do.

Good luck.

lisad123everybodydancenow Thu 12-Dec-13 07:33:33

Message withdrawn at poster's request.

gaelicsheep Thu 12-Dec-13 07:44:49

Thank you. Yes I'll close this thread now I've updated you all. Thanks for all your advice and kind words. It really does help. x

gaelicsheep Thu 12-Dec-13 07:44:56

Thank you. Yes I'll close this thread now I've updated you all. Thanks for all your advice and kind words. It really does help. x

gaelicsheep Thu 12-Dec-13 07:45:11

Thank you. Yes I'll close this thread now I've updated you all. Thanks for all your advice and kind words. It really does help. x

ohmeohmyforgotlogin Thu 12-Dec-13 07:55:54

I know you don't want to think the worst but if she does get a terminal diagnosis ask GP for referral to a hospice. They are not just for end of life and can be hugely supportive, for free. They will have family support services and are very good at helping people get what they need, even early on and then everyone is easy to access when it is needed later.

CelticPromise Thu 12-Dec-13 08:08:41

Oh bloody hell gaelic it never rains does it? You are doing a hell of a job holding it together. I'm sorry to read it's bad news about your mum. My mum died of cancer a year ago, also I'm Wales, and she was also reluctant to ask for help. However she got good support from the district nurse attached to the GP, something worth investigating? It doesn't feel like ' charity' iyswim.

ParcelFancy Thu 12-Dec-13 08:10:51

So sorry to hear this. Hope Macmillan can help on the practical side.

OodKingWenceslas Thu 12-Dec-13 08:23:44

You really are overloaded at the moment.
McMillan and/or hospice support would be v good at getting services in place asap and possibly social services support. This would also take the pressure off you. Would some form of meals delivery help? My grandparents used to get meals delivered for the freezer for off days. They were quite good , think they were Wiltshire something.

You need to find a local carers association to help you and sometimes being registered as a carer helps access extras ( my work logs staff as carers too meaning that they make allowances for time off ).

Re dh , get GP onto it.

Make sure school is aware and know children may be upset/worried. They might be able to help too.

Not sure about Wales but children's services in England can pay for child care in cases like yours.

GoodKingWencesLACK Thu 12-Dec-13 08:26:32

Sorry to hear things aren't more positive gaelic sad

I hope that you can get some local support, but remember MN is here too x

gaelicsheep Thu 12-Dec-13 08:30:31

They won't let me help. They just won't. I want to go up there. I want to see her for myself, and they won't bloody let me. They say they're fine, that DH needs me more (probably true), that me driving up there will just worry them and DH. I need to be able to do something, to see her, to do something - even if it's just getting her some shopping. But I'm stuck in this godforsaken place, that's seemingly doing its best to send DH the same way, and because Mum hasn't actually been told this is terminal I'm supposed to stay hopeful. And because she's not going to die imminently I can't just break down about this. I have to go to work, sort out DH, do Christmas and stay strong and positive for everyone. And today I don't think I can.

gaelicsheep Thu 12-Dec-13 08:37:39

You see I'm not a carer. I'm not allowed to be. And I haven't told the children yet - I don't know where to start.

CelticPromise Thu 12-Dec-13 08:40:55

Does DH have any family? Do you have any friends who have made noises about coming to visit? Any colleagues you click with? Any of the kids' friends' parents who would have them for a weekend? This is the time to ask for help from anywhere you can. I second the MN local suggestion. I'd help you if I was near.

gaelicsheep Thu 12-Dec-13 10:25:13

I get what you're saying, I really do. But if I don't actually need help - which I don't apparently - then I can't really go around asking for it. I will look at Mumsnet Local though.

gaelicsheep Thu 12-Dec-13 13:09:56

Sorry, I was feeling quite down when I posted that. I'm a bit better now, but I will stop posting on this thread now. Thanks again. :-)

OodKingWenceslas Thu 12-Dec-13 13:41:24

You are a carer for your dh.
Our carers association who supported my mum offered the same support to me as her due to me being her back up with my Grandad( I would sit with him & do things to give her a break). I didn't use most of their services as I didn't need them and my mum did.

OodKingWenceslas Thu 12-Dec-13 13:42:09

Good luck.

3bunnies Thu 12-Dec-13 13:59:36

thanks so sorry to hear of your mother and dh. I live a long way from elderly parents and go through the same guilt/stress each time they are in hospital, but unfortunately work & school are here. Would your work let you 'work at home' at your parents house if only for a few days occasionally and see if someone local could help dh with the dc? I would also get them to escalate his investigations too. It needs urgent assessment, as you say within 2 weeks.

Finally you could ask for this thread to be moved to the health board rather than closing it. Use the MN support cos there is usually someone around willing to listen over these next few months.

CelticPromise Thu 12-Dec-13 15:33:09

Sorry I couldn't reply earlier gaelic. You do sound down and who could blame you? I think there are lots of people like you, holding it all together or appearing to, but actually you could do with some help and there's no shame in asking for it.

Do keep posting, even if only to vent. You need am outlet!

gaelicsheep Thu 12-Dec-13 21:02:32

Thanks. I'm feeling a bit better now. Had a good chat with my mum and dad tonight and I got a fair amount of stuff out of my system during the day (at work, not great, but I do feel better for it).

DH has to wait another 5 weeks for his appt, but he has spoken to the GP who is satisfied that this is OK as long as the pills he is taking are working, which they seem to be. He knows he must phone her if anything changes and then she will speak to the hospital

It's funny, all that stuff in the media about GPs not referring people for urgent appointments, when actually it seems the hospitals are just not honouring the timescales in many cases.

I think I will ask for this thread to be moved to Health - thanks for the suggestion!

Musicaltheatremum Thu 12-Dec-13 22:55:28

Gaelic, sorry to hear all this. You are having a rough time. I have lost count the number of times I have referred people urgently for some idiot at the hospital to re triage it as routine. I have had to fight to get people seen. On two occasions I was right and it was serious. After 20 years you sometimes just get a hunch something is wrong.
I hope all goes well with your husband. Hopefully it's nothing serious.

gaelicsheep Mon 16-Dec-13 23:49:45

Hi, I thought I should update since so many of you took the time to reply to me earlier. There isn't much to report though. Things have settled down a bit. DH seems OK at the moment, but very tired and often quite dizzy which worries me quite a bit. Mum is feeling better having started this building up diet she's on, but we'll know much more after she's seen the oncologist this week. It feels like nothing has changed and yet everything has changed, most strange and unsettling.

GoodKingWencesLACK Thu 19-Dec-13 00:29:50

Thanks for the update GS. This limbo must be quite disconcerting; hopefully you will have something to plan around soon.

Your DH and his dizziness...does he have blood pressure issues?

Keep talking here smile

GoodKingWencesLACK Thu 19-Dec-13 00:32:03

Oh, and have you and your DH read about the Spoon Theory

I have lupus and reading this was like a lightbulb moment. Of course I should not be up this late, as it takes up valuable spoons, but luckily I can re-charge whilst the DC are at school.

gaelicsheep Thu 19-Dec-13 13:25:05

Thanks Lack, and thanks for your PM as well, which I know I haven't replied to yet but I will and I do appreciate it so much.

DH - well yes, there are very few issues he doesn't have to be quite honest. He has been on treatment for high blood pressure for years now, and when he had his collapse at the beginning of the year one possibility was that a new pill had suddenly dropped his blood pressure too low, but no one ever really got to the bottom of that. He's just on the one blood pressure pill at the moment, alongside statins and anti-depressants (which really don't seem to be working for him at the moment), and his blood pressure seems to be under control hovering around the 140/90 ish mark, give or take. The doctor isn't too concerned at the moment anyhow. He also has issues with migraines, cluster headaches, itchy skin, tingling, you name it, and I am somewhat worried that this might all add up to something which nobody has thought about yet. I kind of wish they'd give him a scan or something.

Mum now has her suggested treatment plan, a combination of two chemo drugs, but this isn't being started until into the New Year. They have warned her this is not expected to be curative but they aim to keep the cancer at bay for as long as they can. The selfish part of me is glad because it means we still get to spend Christmas with them and have a reasonably normal, happy, family time - perhaps the last one. The thinking part of me is worried because I feel that any more delay has to be a bad thing, something confirmed to me by others who know much more about this disease than me. But my gut feeling says that what Mum is comfortable with is the right thing, and if she has faith in the team who are caring with her and she is more comfortable having time to mentally and physically prepare for what's to come, then maybe that's more important than timescales? I am, however, terrified that she is being encouraged into an aggressive course of treatment when she will already be starting on the back foot through yet more delays. That seems like the worst of all possible options. That's quite a ramble I'm afraid, sorry.

ParcelFancy Thu 19-Dec-13 17:52:30

thanks

(Wish I could offer something more useful.)

gaelicsheep Thu 19-Dec-13 17:56:21

Thanks. Flowers are good. I spoke to the Macmillan helpline today and they have clarified things for me a lot. Where treatment is aimed at prolonging life and reducing symptoms, as in my Mum's case, then the exact timing of treatment does not really make a difference to the overall outcome. If it is going to be effective then it will be effective even if the cancer has grown a bit more and spread a bit more. If it isn't going to be effective then it won't be, regardless of when they start it. And they prefer to leave people while they are feeling relatively well, especially with Christmas coming up.
I feel reassured that there is reasoning behind the decisions being taken, and I'm glad she'll be well for Christmas.

ParcelFancy Thu 19-Dec-13 18:15:24

So glad you've been able to get an explanation - and that your mum will be feeling as well as possible for Christmas.

I think the cancer teams really do get the importance of quality of life, and your DM staying comfortable enough to enjoy the time treatment will buy.

GoodKingWencesLACK Tue 24-Dec-13 00:30:18

No worries gaelicsheep; I know you ahve your hands full xx

Thanks for the update here though; it must be one less worry knowing that there is a plan in place for your mum. Hopefully you can now organise the support that she needs locally to help both her and your Dad through the coming months.

I know how tiresome and worrying odd un-specific symptoms can be, so much though goes out to you and your DH; I hope he sarts to feel better soon. Have they tried changing his ADs though? Sometimes a particular one just doesn't suit.

Hope you have as peaceful and happy a Christmas as you can under the circumstances xxx

gaelicsheep Tue 31-Dec-13 00:19:07

Thanks. Well an update here, if anyone's likely to see it. Mum's condition is certainly terminal. 3-4 months without chemo. Possibly 1 to 2 years with chemo if she's one of the lucky ones. She's getting worse by the day at the moment - pretty horrifying all round really. Chemo starts next week.

DH has now been coughing up some blood and xrays couldn't establish where from. Not loads but enough to worry him (and me, of course). They think he's anaemic from losing blood from somewhere for some time. Pills wise, they are going to see about changing his ADs, but not just yet because of the other things he has to deal with first.

I can't say I'm looking forward to the New Year. But we did have a lovely family Christmas and I'm holding onto that for now.

ParsingFancy Tue 31-Dec-13 00:50:57

Oh gaelic. thanks

Hope the chemo works well for your mum.

123rd Tue 31-Dec-13 01:06:51

I've just read this thru. Really sorry you are going thru this. I hope you got to enjoy a -relatively-normal Christmas break.

gaelicsheep Sat 04-Jan-14 00:23:30

My God, mum is deteriorating fast. She hasn't kept anything down for two days solid and been in so much pain. She'll be having three anti sickness injections a day from now on. It's too fast and too cruel. We don't know if she will even be strong enough to start the chemo next week as planned. Right now that isn't looking good. Can't believe I only found all this out when I phoned them today. Dad sounds so weary,I'm so worried. Think I need to find a thread for people in a similar situation.

ParsingFancy Sat 04-Jan-14 12:15:09

I'm so sorry.

superlambanana Sat 04-Jan-14 12:38:18

Oh Gaelic sad From what you've said I think I can guess what sort of cancer it is - sounds very much like my dad. I wish I could offer you some practical help but in the absence of that please do feel free to pm me if you want to talk. thanks

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now