STROKE VICTIMS WIFE

Congratulations Sparkygran and Mr S too of course. By now the secrets will be revealed and I hope you have both had a great day to remember.

I have done EPAs for us both. I mentioned on another thread that they are very easy to do online now and you can do one for him and one for yourself keeping most of the details the same very easily. I didn't tell Mr P that his one includes me as an attorney but my one doesn't include him. It seemed a bit pointless as he lacks the literacy to carry out any tasks if my one was needed. It may be useful to know that they take about 9 weeks to become effective after you have registered them, so it is worth doing straight away. The Office of the Public Guardian had some bad press recently and I suspect they are being super careful now.

Interesting you should say that Durhamjen Although Mr P cannot write unaided, even birthday cards have to be modelled for him, he can still sign his name which has been very helpful. But in the future??? He is fine with writing electronically as he uses Dragon software which is speech to text, but you can't really do that with a birthday card

Thanks for kind words too Sparkygran Wasn't it Nietzsche who wrote "What doesn't break you makes you stronger"? I reckon us stroke recoverers wives who haven't run for the hills must be exceedingly strong by now!

Sorry, forgot to add congratulations.

I had an EPA for my husband, shared with my son who lives in the same village. Our other son would take over if anything happened to either me or my son.
It did come in useful when my husband could not write any more, and could not sign his name. It was also the case when the medical profession thought that he would not be able to remember what he had agreed to the next day.
Whenever we went to hospital appointments, I was always grateful when he had to go to see a doctor, and I could have time off, even if it was just sitting in the waiting room, knowing that someone else had taken responsibility for him. However, soon I had to go everywhere with him, except into the scanner.

Hello everyone today is a very important day for Mr and Mrs S it` OUR GOLDEN WEDDING ANNIVERSARY and we are both going to rock and roll today. Can`t wait till 1.00 pm when DD will reveal her secret plans for the day. Just wanted to share with you all

All of you are fabulous people and your support and confidence in me (which I don`t always feel) is tremendous. My DH can read but gets easily bored with it but he can`t write and I find this in particular so sad. Have any of you had to get Enduring Power of Attorney? I am his appointee for all Government Departments but don`t know if I should be going the whole hog and getting EPA any suggestions?

Purpledaff I think you are amazing having to go through 4 strokes and a seizure you go right to the top of the class and never forget a glass or 2

Totally agree ceesnan. I so admire Sparkygran for her positive attitude. Any illness brings it's own problems I know, but strokes cause such damage in unexpected ways and life is irrevocably changed. My husband will never be able to read, write, follow a conversation, walk very far or remember a lot of the important events of our life together. He has not been able to drive for a year and still has another six months to go following his fourth stroke and a seizure last year. And yet to look at him, you would think there was nothing wrong with him, he doesn't walk with a stick or hold his hand clenched or any of the other things we associate with a stroke. Every stroke is different because each tiny bit of the brain which gets damaged controls some tiny part of the person's ability or personality.

Hardly Sparkygran, you are a saint! In the seven years since Mr P had his first stroke we have met several men whose wives have upped and left them because they found living with a stroke recoverer so difficult. I would be less than honest if I didn't admit to envying those women at times ' In sickness and in health ' I know but to know that the rest of your life will be full of tantrums, cussedness and interpreting the strange words aphasics come up with, not to mention in my case doing all the reading and writing cos he can't do it for himself. Can be a bit overwhelming sometimes. Rant over.

Know just what you mean re socialising. Mr P has to be dragged kicking and screaming to any social event and I rarely accept invitations to parties because he cannot cope with noise and lots of people talking. He also finds reasons not to stay overnight with friends and relatives which means I have to drink very sparingly if at all and face much more driving in the day than I would rather do. However if the alternative is no social life at at all then NBO. So I think making Mr Sparky catch up with an old friend is very sensible. It's probably a lack of confidence thing deep down and it will be a confidence boost and a break for both of you. So there!

I have followed this thread with interest, but not contributed as I have no experience of caring for a person who has had a stroke. However, Sparkygran I have just GOT to comment on your last remark - far from being the wife from hell I would have thought that the perfect wife would be a better description. Your sheer determination that your husband will get the most he can from his new life is just awe inspiring. I think you are doing a great job - Mr Sparky is lucky to have you fighting his corner

Hello everybody we are keeping on top of stroke - I think - social activities (which he isn`t that keen on - is this a symptom but I have to admit he never was that keen) DH`s lifelong friend phoned yesterday to ask DH to go out for coffee and he threw a tantrum - threw his stick and made unpleasant noises gave him "THE LOOK" and passed over the phone and end result is next week friend will phone and they will arrange outing. Previously I was the one to organize and have to be honest here DH never really was into keeping up male friendships without me pushing him. Is this out of the ordinary? I am determined to keep going and told him off - am I the wife from hell???

That is really good positive news Sparkygran. So glad you are getting what you need. Is the phrase to do with expressive and receptive language? Mr P is usually able to communicate his needs albeit with strange circumlocutions, but finds it very hard to understand things which are not in immediate context. He cannot do or follow small talk at all and will often fasten onto a familiar word and totally misunderstand what I have said. In the mornings he watches the BBC news at least three times and then tells me his version which may well be wrong. Doesn't stop him having an opinion though
As I have said before take every bit of therapy and assessment which is offered as it doesn't last for long! Good luck and thanks for the update

This morning went really well Purpledaffodil GP came out of his surgery to observe DH walking down the corridor and he certainly felt he was doing well. We discussed aphasia and he used a phrase (which of course I now can`t) remember but it meant that if given choices DH was able to communicate what he wants but isn`t able to ask himself if he needs or wants something. That is just a simplified eg but I understood exactly what he meant. He wrote a referral letter when we were there asking for a re-assessment re a walking aid and also for more physio.

They also said as he was there it was a good opportunity to take various bloods so we both left feeling we had achieved something.

Didn`t go shopping afterwards a DH was a bit exhausted with the visit.

Good luck with your GP Sparkygran. You are the people with the strongest interest in this and sadly if you don't fight your corner, no one else will. If DH wants a walking aid, I should go with the flow for now. Better getting out with one, than worrying about over balancing and staying at home isn't it? Mr P used to go up to London a couple of years ago to be part of a university research program on aphasia and he had a strange shooting stick type walking stick with feet at the bottom to balance on when waiting for trains etc. it was useful at the time, but he hasn't used it since.
I do admire your enthusiasm and positive attitude. It must help your DH a lot. Please do PM me if I can help ? and to you

Dear*Purpledaff*so glad to hear that I so agree that what odds if they are taking turns it means that something they never thought about has been taken seriously also good to have you back you have the heart of a lion to take on a school trip with 50 10 year-olds.

Following the fall last weekend I spoke to his GP and he said and I quote "I suppose someone should see him" thanks a bunch anyway we are going tomorrow morning. Mr S feels he wants a walking aid for outside and although I am of 2 minds I can see where he is coming from - it would give him more confidence when going out so we`ll see what transpires and then I`m whisking him off to Tesco`s saw a recepit in the Radio Times for a lentil based meal and we both love lentils so determined to try it.

Keep in touch I feel we have so much in common.

Thanks Sparkygran. Just been on a school trip with 50 10 year olds! Piece of cake compared with 1 aphasic 67 year old . I really admire your 'can do' attitude. You are so right that life needs to go on and I think it is so good for the stroke recoverer to be with sympathetic old friends. Sympathetic as in understanding of course, not too huggy feely as your friend was! It Also makes a difference if you can share the load a little. Otherwise you end up resentful and feeling like the walls are closing in. I have been there! Even if your restaurant trip was more eventful than you would have wished, at least you did it and enjoyed the experience, mainly.

Mr Purple's club, the subject of previous posts, have been so much better in including him, that I am pleased he took a stand against being left out and also that he decided to give it another go. I don't know if they have a rota for chatting to him, but frankly I don't care. He feels included and that is what is important.

Purpledaffodil nice to have you back you will see from my last post the what started off as a disaster ended up ok. Am currently imbibing of yet another glass of the red stuff - so glad my children aren`t reading this!!!!!!!!!!!!!!

I hope you`re right durhamjen it has just reminded me that a few days before DH had his stroke I had an op for Carpal Tunnel Syndrome anyway 3 months later wasn`t happy palm was still swollen and hard went back for checkup and told nice surgeon my concerns and his answer was quote "have you still got the symptoms that you came to me with originally" me "oh no they went immediately him "then I consider that a success".

So today`s expedition was a success we did get there and enjoyed it - you have made me feel much better. Thanks

Well done, Sparky. At least you got there and enjoyed it. My husband was always falling over. He used me as a walking stick until he had to go in a wheelchair. In a few months time you'll be laughing about it.

Are you sitting comfortably I shall begin. Today we were going out for lunch with friends to a lovely seaside restaurant about 20 miles away. I`m up to scratch with toileting but as we crossed the car park at our apartment to meet friends the DH falls flat on his face! This is a man who before his stroke was never know for moving that quickly since his stroke rushes everywhere a neighbour in his car politely waited until our friends and myself picked him up, dusted him off and deposited him in their car. So far so good didn`t know that female friend suffered from motion sickness and she had to join me in the back seat as DH had to sit up front - just an added problem - anyway we arrived at restaurant and I had completely forgotten that there are numerous steps or a long and winding path up to the door. DH is game enough but obviously in a state of shock but eventually we arrived in. I had booked a window table with glorious view - it was another 8 steps - just couldn`t be done so we settled for a table in a dark corner that nobody wanted we settled in and lunch was delicious and lovely waitress told us we could exit by a back door with no steps and the car could be brought up to it so that relaxed us all.

However when we left some b-----d had parked right up to the door so DH had to walk a little way all in all was it worth it? I will say yes life has to go on and I need to socialise with friends as does DH I will have to say that the female of the friends who was with us today was so huggy, feely to DH in her solicitiousness (probably no such word) I saw he was ready to explode and in all honesty I could have slapped her. Does that make me a bad person?

Just needed to get rid of all of above

That is excellent Sparkygran! Have been away and only just saw this, sorry.
If he can really enjoy a social event like this, even with family, then he is doing very well indeed. There is certainly light at the end of your tunnel.

Just to keep you in the loop a very successful birthday party for DH the family all weighed in along with uncle, great uncle, great great uncle, Gordon was in good form and filled us all in on his long road trip with his friend coping with all sorts of nightmarish traffic problems.

The grandchild all made him great birthday cards and hand-made presents he was so thrilled.

Now for the icing on the cake tomorrow the actual day of the big event I am sweeping him off for a bit of light shopping to "Lakeland" and then out for lunch - I know how to give a man a good time!

Sparkygran that is good news! don't worry about lack of confidence, it does return! Have sent pm with more detail! Enjoy your family gathering. Might be useful to give him a quiet space to escape to. Communication at this early stage is very tiring. to you and a happy birthday to Mr S!

Today DH attended his first "conversation group" it was a glorious sunny day and I delivered him on time and then had 2 glorious hours to myself - sadly spent it shopping - when we got home he was able albeit all around the houses able to fill me in on his afternoon which I deemed to be a success but DH not quite so sure " 2 others were much better than me" and one of them is back DRIVING tried to reassure him that they had been attending Group for longer than him and in 6-months time hopefully he will be able to say the same so to cut a long story short he is willing to go back.

Is this the norm that everybody else is doing better than me?

So glad to hear from you Purpledaffodil and can only hope that you and Mr D have lit a candle in the club and they will be more aware of the difficulties of people who have suffered a stroke. Sending your way.

Purpledaffodil have never heard the term fluent aphasic that sounds exactly like Mr S he can go all around the houses to until he finds a way around the loss of words and communicate - am I ok in feeling that this ok?

We have a challenge this weekend as it`s his birthday next Monday and family gathering on Sunday to celebrate so wish us luck - grandkids are really good and give him time just hope he doesn`t feel lost as when as you all know always happens everybody is talking at once.

Durhamjen good on you both for frequenting the pub its as good a place as anywhere to enjoy being out

Now that is looking on the bright side of Life Durhamjen. Mr Purple was involved in a training course for young police officers a couple of times to show them that slurred or unusual speech does not necessarily equal drugs, alcohol or mental health problems. Sadly it got stopped because of funding problems.

My husband's aphasia meant that he always sounded drunk, slurring his speech and speaking very slowly. As he was also incontinent and could not walk far, we used to spend a lot of time in pubs when we lived in York!
Look for the good things.