wish i had support now....

[iamsufferingnow]

serious matters are spinning round my head.
dh had minor heart attack in january.no cause was found,
he is fully recovered, as if it never happened.
then he had a suspicious spot, a biopsy revealed nothing.
last year he had whiplash from a fall.
Just to paint a picture of the last few months.
I supported him totally, emotionally and physically, in a calm and kind/caring way.
Even though it was pretty stressful for me, the constant appointments, hospitals and surgeries, I kept our spirits up as best I could.
every moment of the day/weeks/months were focused on dh.
now...here is the issue for me.

during this time ,my sister (76yrs)is terminally ill in hospital which takes me three hours to get there by public transport.

she is alone, no family/children/ and her husband is in care with dementia.
I go alone to visit her as often as I can, I have an appointment Monday to discuss what can be done next for my brave uncomplaining sibling.
it is immensely distressing when I arrive and equally when I have to leave her.
she is a tiny traumatised body in her bed.

BUT, this is the awful situation for me.

my dh, is totally disinterested in this situation.it is me, me, me as far as he is concerned.
he refuses to accompany me on the visits, I really need emotional support, the sort of support I have freely given when he needed it.
i am fearful travelling through a big city alone at night...I am an oap myself.
last night when I was talking to the hospital on my sisters behalf, my "dh" became annoyed as he had a face as black as thunder, and moaned that he missed his tv programme...the tv was on though...he was just pissed of because I was on the phone.
when I reminded him how I had always been there for him, he shouted "you should be anyway".
needless to say the argument escalated and I went to bed at 9pm, just to get away from this selfish self centred bastard.
silence today, I just don't know what to do next.

[lifebeginsat42]

I'm so very sorry to hear about your sister. It must be so sad for you. Please continue to visit and support her as much as you can. Is there any way you could maybe stay in a cheap hotel near her to save some of the difficult travel?
As for you H I really don't know what to say. He is being v selfish and unreasonable. If it were me I'd let him sulk and focus on you and your sister.
You are a kind and caring person who deserves better and I'm really sorry to hear he's been such a pig.
Please take care of yourself too.

[MyDogAteMyBelt]

I want to echo what life said. You do deserve better, and take care of yourself. Do you have a good friend you can spend some time with?

[iamsufferingnow]

thank you.
yes, I have three close and long term trusted friends, who have been a massive emotional support for me, in the absence of husband.

I would go and stay with one of them, but dread the likely escalate argument that would certainly ensue when I said I was going for a couple of days.
he can only see his needs being met, never looking at me and seeing someone exhausted.
i'm going out for a walk by myself, trying to decide what to do next and how i can cope with the next few days/weeks.

[MyDogAteMyBelt]

I'm so pleased that you do have great friends.
I understand the fear you have about trying to prevent arguments. It's a horrible way to live though.
Enjoy your walk, I hope you can come to a decision about what's next.

[Wingedharpy]

Has he always been like this or has it just been since his health problems started?

[iamsufferingnow]

looking back, he has always "kept his head down", never putting himself over the parapet so to speak.

always a bit insecure, relying on me in so many ways, I can see that now.
very ocd, turns lights off, closing doors, I can't stand it.
always sits on the fence, never making decisions, I feel I have carried him for years.
yet for once now I need a strong shoulder, it just isn't there.
I am going out, I will say I am going for a walk, but i'm sure it will explode.
just want to run away from him.
outside he jokes with everyone but at home he is a miserable sod.

[woowoo22]

Poor you OP. What a burden, very much compounded by your selfish spouse.

[Morganly]

Is the friend you can stay with nearer the hospital so that you can visit more easily? If so, I think that is an excellent plan. Let him sulk, the selfish git. Just ignore him. Make your plans, then just tell him at very short notice so that you don't have to put up with his tantrums for very long before you go.

I'm afraid he isn't going to suddenly turn into a lovely supportive spouse so you need to be a bit assertive and organise things to make life a bit easier for you at this difficult time. It's good that you have friends you can rely on. A bit of a break from him will do you good too.

[ImperialBlether]

What a selfish man. Your poor sister - I hope you get the chance to spend a lot of time with her.

OP, could you manage financially if you split up or are you tied into living with him? You only have this one life, as I'm sure your sister's illness has driven home. There's no reason to live with people who only think of themselves.

[iamsufferingnow]

well, one of my friends lives slightly nearer, still need trains etc, though she said she will willingly go with me for support.

I don't tell anyone the truth about him, they would be amazed, behind closed doors.
couldn't manage financially to split up, I would love to, but we would both be in dire straits, and at this age it would be horrendous.
I have just come back from a beautiful beach walk, alone, sort of reinforced my situation.
he grunted when he saw me, but to be honest I didn't even want to look at him.
I feel just so let down emotionally.
I did everything for him for so long, but it's simply not reciprocated.
i'll just sit quietly and read now.
feeling so empty.

[cozietoesie]

Awful - I feel for you.

Is there any chance at all that your sister could be moved to a hospital or hospice much closer to you? A hospice would be wonderful if you had a place close by.

[iamsufferingnow]

I have been asking this for a while now, but am told it isn't possible.
sometimes when I speak to staff they say, my sister may go home to be with her husband...for god's sake he has dementia and is in care.

it's a mess.
but mondya I will travel there and speak again to them.
my sister is afraid what will happen next.
not only has she stomas's, one desesed kidney, but a stage 4 pressure sore, to her bone.
I weep for her.
but hey, my dh ain't bothered

[cozietoesie]

It sounds as if there's an issue not necessarily of importance but of immediacy ? The situation with your husband doesn't sound good but I would have thought - from what you've said - that your sister simply has to have more of your time right now.

You sound exhausted, though - and I've been in a place similar to you so know just how dog-tired and empty you can feel.

I'd keep on investigating the issue of alternative care on her behalf - do you have contacts with any organisation like Macmillan's or Marie Curie ? - but also be thinking how you can support her while preserving yourself as best you can? Don't worry about leaning on your friends a lot - they sound as if they'll be there for you.

[ImperialBlether]

Just thought, could you go to stay in your sister's house for a while, so that you can go to visit her regularly? It would give you a break from him and would let you visit your sister.

Do you and your husband own your own home? If so could you get two flats for the same money?

[WallyBantersJunkBox]

Op, virtual hug from me.

You need to take the last vestiges of strength and rise up to him.

I think his bark is worse than his bite. You raise the subject, he barks you down, he gets his way.

What is he really really going to do if you go?

He's a miserable sod at home anyway, so you'll just be returning to a miserable sod, but at least you'd have done this for your sister and yourself.

Your siblings are so important in adult life, they carry the memories and love on in a family and see each other in a specific perspective. You need to both share all that again now, while you can.

If it's travel is there anyone who can give you a lift? There are websites for this, but friends, family, anyone?

Stop worrying about him or the outcome and just do it please.

[iamsufferingnow]

on Monday, I am hoping/determined to make progress. my sister has been in hospital since January until march, then readmitted in june until now.
during that time her husband was found wandering and is now in permanent care.

I couldn't stay at my sisters, even though it is 5 minutes away from the hospital.
sadly there is backstory, basically her husband isolated her for many years, it is only now I can help her.
yes, I will take control and go to a friend for a few days and travel daily to the hospital.

[cozietoesie]

Is there any strong reason for not staying at her place if her husband isn't there, iam ?

[iamsufferingnow]

sadly, there is an awful reason why I can't stay there.

as my sister has been in and out of hospital for years now, basically bedridden for the last two ,in her sad words, the place is "squalid"

her husband refused to allow anyone through the front door for years.
each time she is admitted to hospital he constantly rang me for support, yet still wouldn't "allow" me to go there.
I offered cleaning, meals, any support I could think of, but he refused, even to nurses coming daily.
her pressure sore is a stage 4, due to not receiving...or being allowed to receive......daily help.
she was offered palliative care last year, but he said no.


I booked a premier inn last year to stay and be closer to her in hospital, but after his relenting pressure she told me to go home, which I did, not wanting to add more anxiety for her.
so, to be honest, it is only now that I can see her without worrying she will be stressed as he is in care.
it breaks my heart when I see her, even worse when I leave.
her face lights up when I walk through the door of the ward.
she hugs me like there is no tomorrow, which there isn't long I know.

[cozietoesie]

OK. He's not going to go back there by himself now is he? So who will the eventual burden of clearing up the place probably lie on if not on you? Do they have children to assist?

I wonder how much happier and less stressed your sister might be if you can say to her something like 'Don't worry - I'll sort things out for you' and let her relax. (And then go in like a dose of salts and clean it up over - say - a weekend prior to using one room as your sleeping base. ) And to know that you're staying close by and without apparent cost? I suspect that would be a weight off her shoulders.

[iamsufferingnow]

I have offered to clean up the home, but my sister said it's too bad.no children at all, no family only myself.
I have repeated said to her, don't worry I am here for you.
if you want anything at all I am here.
but she won't even give me the keys.
she said incontinence and lots more, she is so ashamed.
by the sound of it it would need a cleaning company, though I don't think she will ever go back there, she is too poorly now.
I will do my best for her.

[cozietoesie]

Yes - there are companies that specialise in 'difficult' cleans so it might be more appropriate for that. I don't think you can simply say 'I'll let them deal with it all' becaus it may distress her to think of possibly precious, sentimental things being shovelled up by strangers. I do, though, think you've got to find some way to get in there: eg just finding some old photos for her might be a fitting thing to give her to have and to talk about?

If she won't even give you the keys, I'm guessing that she's more wound up about it - for a variety of reasons - than she's admitting so she may be at the stage when she deep down wants to 'go out cleanly' - as many do - but simply doesn't know how to go about it. Poor woman.

I simply don't know the best way to go about it and other, wiser, minds might have better ideas. It may be that telling her your own problems would cause her distress - rather than soothing her - because she sees you as a happy old rock. I don't know although I can guess how bad the house might be.

[cozietoesie]

The thought of her face lighting up when you walk into the ward really touched me. Imagine if you could go in and say (even with some degree of falsehood) 'Yeah - it's not as bad as you thought, dear. Easily cleaned.' I would have thought she'd feel immensely better.

[iamsufferingnow]

I would love to clean it, but she won't give me the keys.
I asked her if she wanted anything from the flat, but she has nothing she wants. she has been in hospital gowns since june as she hasn't any decent ones of her own. her sick husband said he was allergic to new items, chemicals etc and she hasn't had anything new for decades. I sent her presents but she finally admitted he wouldn't let her keep them.
I said I would get her some new things for hospital but she said if I did, she would need someone to launder them, and as I go there when I am able, it would stress her more, having soiled garments by her bed.
I have tried/thought of everything to help her, but I am feeling helpless now.
maybe Monday will change/explain things.

[cozietoesie]

Dear Goodness.

I'd 'borrow' the keys and have a set copied. I really would. She sounds too ground down to be capable of making decisions.

From what you saiid, perhaps the staff don't know her full circumstances? (She may, in desperation, have been spinning a story to keep them all at bay.) See how Monday goes then.

I'm conscious that I haven't much mentioned your husband - which was the reason you came here in the first place. I think those matters - and him - will have to keep until she passes because I just don't think you would be able to cope with dealing with that relationship as well as your sister's. You're too exhausted. (In that regard, staying over by your sister/in her house might be no bad thing if funds would stretch.)