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Original poster

any chance of a honk.....

26 replies

signandsmile · 09/09/2012 18:27

I know there are loads of people on here with much huger issues.. but I am struggling a bit... it's the conjunction of ds's and dh's needs. Ds is doing really well, but still needs lots of support, dh is going down hill... Sad
(degenerative neuro muscular illness)

I just put dinner on the table and dh falls in the kitchen,so much pain and dis-orientation can't tell me what he wants/needs, so am running in and out between him and ds and watching the dinner get cold on the table. he needed to stay down, so covered with a blanket, gobbled my dinner, re-assured ds and put dh's tea in oven... dragged dh to better position, and her crawled into lounge, but "needed quiet"... Hmm ds is not 'quiet' and we are in the bed time routine so don't want to de-camp to other room with no TV...
DH gets up, starts tea, then has a muscle spasm that throws him off the chair.... Sad

I get away for a few days every so often, (I know I am lucky to get that), and I can forsee the time soon when dh is not safe to be left with ds,,, even with all the support and backup I organise to go away, Sad

Sorry, just having a whinge, will tell self to buck up, Blush

OP posts:
Triggles · 09/09/2012 18:37

honk honk!

Oh, sign that sounds like such a struggle... Is there anyone that can physically help you out ? What type of support is available to come in to assist with your DH's needs, if anything?

Hope it gets a bit better for all of you soon... wish I could help...

Galena · 09/09/2012 18:50

honk honk honk

Sorry to hear you are struggling. I'm not sure what else I can say - but fight for all the support you can get.

TheNinjaGooseIsOnAMission · 09/09/2012 19:59

honk honk sign, sorry to hear that, sounds tough

madwomanintheattic · 09/09/2012 20:01

Honk.

Time to request a(nother) carer's assessment?

Don't wait until you can't cope. Start the ball rolling now, if you haven't already.

zzzzz · 09/09/2012 20:16

This reply has been deleted

Message withdrawn at poster's request.

Original poster
signandsmile · 09/09/2012 20:49

thanks guys... Smile, it's that old 'round peg need square hole service'... if he needed washing or dressing they could provide that, but his symptoms arre so unpredictable... we manage mostly, its hard cos he doesnt want to accept that he is losing abilites...

We had an assessment from adult social care and they offered some hours support, so that dh could do things with ds without me... then we had the financial assessment and we were just over the limit, so would need to pay top price for care, didn't matter how many hours, same price, thus our few hours were hugely expensive.... could have paid it, but it would have meant cutting back on other necessary things... Sad

I think we just need to have a real cards on the table think about how we do things and what we need...

Dh is going to see his mum this week, (if tomorrow is a good enough day for him to be able to travel) so I will have some time just with ds, which will be nice IYSWIM.

thanks for your honks, Grin

OP posts:
EllenJaneisnotmyname · 09/09/2012 21:02

More honks fom me. The support finances seem a bit daft, can't you just pay for the hours you need rather than a flat rate? Or would that be just as expensive? I'm sure you've already looked into it, but my mum gets carers in daily, has too much savings, (thanks to my late dad) and only pays for the hours she needs.

imogengladhart · 09/09/2012 21:09

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Message withdrawn at poster's request.

frizzcat · 09/09/2012 21:21

Honk honk honk

Original poster
signandsmile · 09/09/2012 21:28

thanks ellen, difficult thing is he is so variable, on a (very) good day he can walk to the bus stop and go for ride, on a bad day he is crawling round house, and no way to know what a day will be, also a bad fall will turn a good day into a bad one... (he's nearly 40 now and 30 years of falling means he doesn't bounce as well as he used to...)

he feels pretty fed up, and I am treading on egg shells a bit.. I am thinking maybe the time is coming to have the 'pendant alert' system talk, so that if he falls I know he would have help... but he will hate it. (Won't use the dial- a- ride cos it is 'only for old people', argh! Angry)

OP posts:
alison222 · 09/09/2012 21:32

Honk Honk.
It sounds tough. Sorry I can't be of help, but sending positive vibes your way.

Triggles · 09/09/2012 21:37

Sign - I agree that it would be good to discuss a pendant alert. Perhaps point out to him that in the long run, while he doesn't like the idea, it is what is best, and that includes what is best for your DS. He MUST think of the implications of this and let go of the pride part of it. I'm sure it's difficult - I would hate what seems to be a loss of independence - but it's all about safety and not only his well being but that of his child's.

NoHaudinMaWheest · 09/09/2012 21:38

Honk honk.

That is really tough and I don't think posting about it constitutes a whinge at all.
It is so frustrating that suppport services are so inflexible and while understandable that your Dh doesn't want to use what is available, it makes it doubly hard for you.

auntevil · 09/09/2012 21:44

Huge HONK from me too.
It is difficult splitting yourself into lots of different people and places. You need to be mum, wife, carer, co-ordinator and general dogsbody. But as they say, who cares for the carer?
Make sure you don't lose sight of you - it happens so easily.
Honks available whenever!

StarlightMcKenzie · 09/09/2012 22:18

Oh sign, that DOES sound incredibly difficult to get your head round. I hope you work it out.

madwomanintheattic · 09/09/2012 22:23

Def time for pendant alert. A relative had one but was too proud to wear it. He fell and wasn't found for three days. Sad

It would give you peace of mind when you are away?

Fingers crossed for a good day tomorrow x

mymatemax · 09/09/2012 22:38

Dont really know what a honk is but sending you one anyway. Does he have the opportunity to speak to others with the same condition. Accepting help is hard but accepting a little support can mean keeping independance longer.

EllenJaneisnotmyname · 09/09/2012 22:41

Blimey. My mum has a pendant. She doesn't like it, makes her feel old. She's 81, not 40. Sad It must be incredibly hard for your DH and for you.

justaboutiswarm · 10/09/2012 02:03

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Message withdrawn at poster's request.

mariamma · 10/09/2012 03:05

Sign, i might be teaching my gran to suck eggs, but the rules are very different for care payments for dc. Would dh find it easier to accept someone being around if it was badged as being for ds, not for him? Without ds he could just take a risk on getting stranded with a spasm or whatever, so it's true (ish).

Something like this might be 'for ds in emergency' but also be simple enough for a fallen-over and panicked dh to use without having to wait to calm down? On a similar note, dogs for the disabled can bring you a phone or raise the alarm after a serious fall. Much furrier, cuter, and better for a feeling of 'normal life' than a pendant! Good therapy for dc with asd as well...

Agree with justa that a pay cut to allow some care might actually help... If they disregard dla/carers (tho a lot if councils now don't) and you end up below carers threshold as well, then you could perhaps claim for dh care and he could claim for looking after ds...

Am sending honks, hugs and lots of prayers too.

Lolaismyfavouriteandmybest · 10/09/2012 14:35

Honk Honk! Sorry to hear things are so hard for you. Sounds like you've had some good advice. Hope you can get some more help before your situation becomes unmanageable.

Original poster
signandsmile · 10/09/2012 16:08

thanks guys, you have made my day.... i do actually feel lifted by flying in formation with you... IYSWIM, Grin Blush.

i have told work I cannot travel so far for work, or have so large a student group, when the UNiversity goes back in Jan and they have been brill... will look for a smaller closer group, less money, but that is manageable, (what a difference a good boss makes, Grin) so that will make situation less complex, and I am going to have some serious conversations with DH when he is back from DMiL, about what we all need as a family,

you know how it is, everything feels better if you have a plan and some things you can do, however small,

thanks guys.... I mean it!

OP posts:
ouryve · 10/09/2012 16:14

Sign - your problems are never any less valid than anyone else's.

honk

Lougle · 10/09/2012 16:22

You want a honk? You need a whole flock of geese to yourself!

You are amazing. It's exhasting just reading your account of that episode. And it's a funny thing, but I find that food does magnify everything. You're tired anyway, it's an achievement to get a meal on the table, then it's all for nothing because everything explodes.

I second the notion of getting hours packaged for your DS, which means that you can keep more of an eye on DH if incidents happen.

TirednessKills · 10/09/2012 18:56

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