STROKE VICTIMS WIFE

You have my sympathy, sparkygran. Although my DH hasn't suffered a stroke, he has COPD and muscle weakness and any stress makes him want to wee - urgently!

We keep a large-necked bottle in the car for emergencies, you can get 'official' ones on the internet, but please don't let this problem stop you having days out together.

Poor you, *sparky8 - that must have been scary.

Did you pass any pubs? I quite often ask to use a the loos at a pub, without buying a drink and have never been refused.

I do feel for you, sparkygran DH had a stroke nearly four years ago and the first few months of recovery were very challenging. Agitation, anxiety and mood swings are completely normal and were an everyday occurrence so my nerves were often in tatters. I was also playing a large part in my mother's care (she was also a stroke victim) so, looking back, I often wonder how we got through it all.

Your story of your journey home is very similar to some of my experiences., the most frightening being when DH was convinced I was driving the wrong way round a roundabout and tried to grab the wheel . He also shouted at me at a petrol station because he thought I was filling up with diesel not petrol. Things slowly improved and he is now back to his normal self although he is registered blind.

Make sure you explain to him how his behaviour is affecting you. DH told me he used to try really hard to control his agitation but sometimes he just could help an outburst. We can joke about it now but I can understand how frightening it can be.

Can you talk to your GP or District Nurse. They may be able to help.

Thanks for support sometimes you feel as if you are the only one going through major traumas and sadly this is not the case.

I am always glad to hear that there is a light at the end of the tunnel so thank you for that.

Merlotgran as I type I am sloshing a very nice Italian Primitivo into a glass I know my "children" are slightly concerned that Mum is imbibing too frequently but you know what I DON`T CARE.

Why do one's children become so starchy and strait laced? I'm living the life I should have had. My gap year is being taken a month at a time and I only drink good stuff. Carpe diem. Hope it gets better for you.

The bottle is the best idea - it provides a sense of security knowing that there is an option. But the agitation and anxiety are par for the course at this stage I think. Please don't be put of from getting out and about.

sparkygran you can buy male bottles (same as used in hospitals only not cardboard) in the chemist. Carry on with the wine, I know it helps!

sparkygran as Grandmanorm says..you can easily buy the male urine bottles in the chemist..think I paid around £5 for one a few yrs ago, it has a clip on lid and it can be bleached/washed etc...DH keeps it at the side of the bed and does now use it during the night...as he is now very bad walking and becoming partialy sighted...there are many aids out there, we also used to take it with us on days out, although that is less frequent now, at a pinch you could always use one of the plastic milk bottles!! We never did as DH always said "the hole wasn't BIG enough"!!! lol...

You can find a portable urinal on Ebay. There are shops selling disability products in most towns and they are sure to have such things. Good luck.

My friend used to have the same problem with her husband who has Huntingdon's. All outings had to be planned round loos or he would become very agitated. Now he has to have a catheter so it's one problem solved, but a whole lot of new ones.

Oh dear Sparkygran . I believe stroke recoverers wives are under sung heroes! Your situation sounds very familiar. The agitation seems to get a bit better over time, but is so hard to deal with. My husband shouted furiously at a man in Homebase because he had accidentally stepped on DH's toe. Even threatened to punch him! I don't know if your husband has any obvious physical problems, but even after 4 strokes, mine doesn't. It is all in literacy, speech and language difficulties (aphasia).
Losing control of bladder or bowel function does seem to precipitate agitation understandably, but not being in control of the driving does much the same I find. Travel anywhere is difficult because of this and going abroad is a nightmare. You don't say if your husband suffered a seizure as a result of the stroke, but if so, some epilepsy medicines make the moods worse.
It sounds trite, but all you can do is take it one day at a time. Plan as if you were dealing with a large and opinionated toddler, locating toilets and availability of cups of tea (another of DH's obsessions) in advance. If you can foresee problems and plan their solution it helps enormously. Ditto red wine things do improve! to you!

Oh yes, the toddler tantrums. These have become so much a part of daily life that I often say something like, 'I want to stop off at the garden centre when we go out today so can we get the tantrum out of the way now?'

Supermarkets and garages seemed to cause the most confusion and anxiety. DH nearly knocked me out in Aldi when he accidently punched me in the face because he was reaching out for something and hadn't got used to his lack of peripheral vision. Very embarrassing having to explain to people that I wasn't being attacked!!

The best one was when he insisted on filling the car up while I went inside to pay. He put the petrol cap on the roof of the car and I didn't realise until I went round the corner and it fell off. I pulled into the side of the road only to find that it had landed in a coach parking space and would you believe it, a coach chose that very moment to park over the top of it. The bloody driver refused to back up just a few yards so I could pick it up. DH then started shouting at the coach driver (justified) and the passengers started waving their fists at DH. Just when I was about to run away/ burst into tears/drive off and leave him there, a police car pulled up. Apparently the policeman had been putting air in his tyres and had seen the whole thing. You've never seen a coach reverse so quickly most of the standing passengers fell over

Sometimes there is a knight in shining armour just when you want one.

My OH has been far worse since he had a benign brain tumour removed nearly four years ago.
He get's very agitated and blames everyone else (me) when the problem usually is that he has made us late setting off by faffing about.

The effects of this added to other problems makes going anywhere much a nightmare, he starts flapping if we don't go the way he suggests which is rarely the most convenient route.

My husband fell off a ladder and broke his back in 1996. After that he was doubly incontinent. We lived our lives round his toilet needs. Eventually you learn to laugh at the accidents. You tell people in places where you go regularly, so they do not get surprised when you dash off to the loo with him.
One thing, it is possible to get a card to show so that you can go to any loo without havint to waste time explaining. All shops and pubs should let you use a toilet, and the service station which did not have a public toilet would have had a staff one which they would have let him use if you'd shown the card. I cannot remember if you get the card from the council or the NHS, as he died two years ago.

You are all fonts of information and I thank you and Merlotgran the petrol cap incident is hilarious but at the time it must have been horrendous. Have picked a few tips from you all and will implement and I won`t be put off us going out and about. Our next jaunt is Thursday for coffee with friends thankfully only 10 minutes away.

I`m glad the red wine meets with your approval sometimes life just needs a bit of a kick up the backside and the wine does it for me.

DH stroke has affected his right side and although he is reasonably mobile his right hand is problematic and the loss of words (aphasia) distresses him greatly. However he is recovering though he doesn`t see it and is joining a conversation group headed up by a Speech and Language Therapist next week and is looking forward to it so hopefully that will help find this elusive pathway past the damaged part of the brain and help him recover some more words

Sparkygran you have all my sympathy. Aphasia is a hidden handicap which does not get the attention it deserves. Your group with a speech therapist sounds good. DH tried several run by volunteers. Which were not helpful. Former head teachers do not take kindly to being asked to play musical bingo! Take anything you can get though as it s not offered for long. There is a lot of excellent software around which can be helpful, especially if his literacy is affected. If you can get to Central London there is an organisation called Connect which offers a good drop in centre. Remember to "fix your own oxygen mask first". Coping with a stroke recoverer, especiallyone with aphasia is no picnic and you will need all the social activity you can get. DH can cope with more than two friends at a time, he gets frustrated in bigger groups as he cannot follow the wide ranging conversations. He either gets stroppy or delivers a long monologue/lecture. Given the words he is lacking and his tendency to swap pronouns at will, this s not the way to keep friends. Good luck and to you..

Just wanted to say that you can get a 'Just Can't Wait' card from the Bladder and Bowel Foundation. They ask for a donation of £5.

It might also be a good idea to get a Radar key, which opens disabled toilets which are usually locked.

Oops should have said"cannot cope with more than two". merlotgran I can see where your name comes from now Perhaps I should change mine to Proseccogran? We used to say the odd glass made you a better mother. Certainly makes me a more tolerant carer!

Purpledaffodil if you are considering changing you name in honour of Merlotgran I should probably change mine to Riojagran but I`m not averse to a Merlot or in face I`m quite amenable to any good red

Stansgran you are so right why or why do one`s offspring become so purer than pure don`t they understand that "Mummy" is having to cope with a hellish situation and a few glasses of red wine help her remain sane.

Having said that DD is a star one DS is great the other one says there is nothing wrong with Dad he`s better than he has been for years!!! get rid of the care package and have you not yet conquered shaving!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Agaaaaaaaaaaaaaaaaaaaa

Pure Offspring Syndrome passes down through the generations - Think Saffy on AbFab! When we were on holiday just before Easter, Our fifteen yr old grandaughter was frowning at her mum for pouring another glass of wine while Granny was happily knocking it back with no tutting from anyone.

Like that one my 9-year-old granddaughter asked recently "how many glasses of wine do you drink Grandma" answered evasively that that was a very question I was not prepared to answer thankfully she accepted that. Whew

It seems relevant to this thread to add that we are currently having a lot of angst, with an international professional men's organisation to which Mr Purple has belonged on and off for 30 years. Won't name because it might lead to identification problems. Anyway, he has found that he is left very much on his own at meetings cos blokes find it easier to talk to other similar blokes, rather than chap with aphasia. Interestingly a news item today said that a third of people admit finding it awkward talking to disabled people. Because aphasia is a hidden disability, I suspect it is easier to leave a chap out of things rather than if he were in a wheelchair.
Being a chap of very few words, Mr P emailed and resigned, cos he was fed up with being Billy No Mates at so called fellowship gatherings. I have seen this in action, so I know it isn't paranoia. Shall I talk to the leader who has called and expressed sadness at the resignation? Or shall I just let Mr P let go of his last remaining contact with normal pre stroke life? Tricky one!
P.s Not being entirely altruistic here. It is the one evening I do not have to be his total companionship and now it has gone

Shame on those other men Purpledaffodil. When will society learn to be inclusive and when will the general public show some emotional maturity ? At the other end of the scale my DGS who is autistic with no obvious physical disabilities is ignored and worse by his peers while his cousin with cerebral palsy and in a wheel chair gets included.
It is hard for you too with no time to re-charge your batteries Is there something else he could join though it would not be easy? for you and kind thoughts.