STROKE VICTIMS WIFE

Back again I had help from Disability Action to fill in form for Higher Rate DLA for DH a few months ago even though I thought through my employment prior to retirement I knew the way to do it - I didn`t. DH did get higher rate but I didn`t qualify for Carer`s Allowance because I am in receipt of State Pension - I didn`t know that SP was termed a benefit in my innocence I thought is was an entitlement!!!

Yes do apply - and do get help to do that. As purple rightly says, the right person knows how to word it - I spent years doing this!

Soutra I can only add to what others have told you by saying a lovely ex social worker helped me fill n AA form for my Dad. When I did it alone, he was turned down, when she did it, he received higher rate AA. The key apparently is to think about the worst days,rather than being up beat and positive. It made such a difference to his quality of life for the last couple of years and mine too because it paid for a cleaner and gardener, who was not me. and good luck to you.

Granntknot that poem is just so beautiful I`m reading it again as I type I also have a glass by my side and life at this particular moment is good.

I've not read this thread before yesterday - because I am in the very fortunate position of having a hale and hearty husband at the moment.

Like others, I am full of admiration for those who cope with sick husbands and partners and other family members.

I was reading my book "Under the Wide and Starry Sky" last night, about the love affair and partnership of Robert Louis Stevenson and his American wife, Fanny. He was sickly from the time they met (when she was a 36 year old mother of 3 children and he 10 years younger). She nursed him for the rest of their time together, and in doing so, trekked with him all over the planet searching for the climate that would be conducive to good health for him. At one point - with his inheritance from his father - they take off to the Samoa Islands in a yacht. The sea air agrees with him and he is in better health than he had been for a while. They are happy. At one point she returns to their sleeping quarters whilst he is up on deck and he has pinned the following poem to her pillow, reading it, I thought of many of you on this thread:

Trusty, dusky, vivid, true
With eyes of gold and bramble-dew
Steel-tree and blade-straight
The great artificer
Made my mate.

Honour, anger, valour, fire;
A love that life could never tire,
Death quench or evil stir
The mighty master
Gave to her.

Teacher, tender, comrade, wife,
A fellow-farer true through life,
Heart-whole and soul-free
The august father
Gave to me.

Yes definitely. Get someone from CAB or SSD to help you fill it in - getting the wording right and your thinking behind it as you fill it in can make a huge difference. Basically you need to be sure you are not underplaying it and be clear that the answers you give need to reflect how he would be if you were not there.

AA acts as a trigger to apply for carer's allowance too, so do not hold back on that. Anything that makes life a bit easier - go for it!

soutra, I would be fairly sure that your DH would qualify for the higher rate AA ! Talk to AgeUk and see if they can give you help filling in the form. That's not to imply you are incapable but they know the buzz words! DHwas a home visitor helping people to do just that but I'm not sure they still offer that service! Sorry that almost duplicated Jen's post!

I agree stansgran - amazing women on this thread and lots more who are the major carerd for their DH in different circumstances! I know it was part of the bargain but we never expect it to happen to us! And, like rockgtan, I'll be nice to my DH, at least today!

I am reading this thread for the first time (woke up too early!)
I have such admiration for all the people here who are coping with a DH who is incapacitated. I shall be nicer to my perfectly healthy husband today and count my blessings. My friend's husband had a slight stroke a year ago and although he has recovered he has lost a lot of confidence and I know she feels the strain of it. You are all stars and I think that whatever gets you through is fine!

Check on the Ageuk website. It's very informative.
Someone from Ageuk came and helped us fill in the forms for my husband. That was for DLA for care, and they are similar forms. He already had it for mobility.
His reluctance means that he will probably not stress enough the difficulties he has in performing certain tasks. That's why it could be useful to have an outsider from Ageuk to be objective.

I have realised I mean Attendance Alowance!

Sounds perfectly reasonable soutra but you'd have engage a carer other than yourself. As soon as you're of pensionable age you can't claim the allowance. We found this out when we were enquiring for my daughter and discovered it couldn't be paid to me so it's paid to her partner.

Can I ask a personal question - and feel free to ignore or reply by pm if you prefer. A friend has suggested that DH would be eligible for Carers Allowance as he can't cook for himself or shop or deal with laundry,carry stuff arpunnd the hpuse or reach above head height, needs a seat in the shower, dressing is slow and painstaking and he likes me around or at least to be in the house. If I weren''t there to drive him he would have to get taxis etc OK I am mostly there to do these but eg when I go to help DD when DGC is born - very soon!- I will have to leave food prepared and make contingency plans with neighbours if there are problems. It had not occurred to me to claim and he is reluctant to but there are certain expenses which we would not have if he could cope on his own. What do yoz think?

There`s something so amazing about being able to express all these difficulties that so many of us seem to be constantly battling and finding that you are not alone. I`m so new to this "full time carer" business and have had to learn on the hoof as it were but am so glad I found GN.

Soutra I felt exactly like you when I first left DH for short times to simply do a bit of shopping but have gradually lengthened my time away I have to give DH his due in this as he is always encouraging me to meet friends etc but of course it`s not like it used to be but that will never come back so must get on with it.

My art class will be starting again next month and last year I had started at another one also but wasn`t able to get to that one but intend to go when it also starts up next month. I enjoy my painting (I`m not very good) but occasionally I should say very occasionally I produce something not bad and it`s good therapy for me.

Thanks Stansgran for your kind words it`s nice to hear from you.

I have not read this thread before and am overwhelmed with admiration for you all. Totally overwhelmed.

Snap Soutra. Looking around at other couples we know, it tends to be the women who make the plans, decide on the outings etc, while the men are quite happy to potter around at home but will go on the outings or holidays quite happily. When you factor in ill health in the man, you end up with a woman who is still keen to do the social stuff but cannot without deserting the poorly man.
Mr Purple has admitted that he gets frightened if left alone at night, which he puts down to fear of intruders. Personally I think it is down to a frightening seizure he had in the middle of the night last Autumn. I couldn't scare off a marauding pussy cat, let alone a violent marauder but it means I can no longer go to visit my friend 80 miles away without driving there and back in the day. He also will not stay overnight with friends as he needs to go to the bathroom in the night. I assure him that all people of our age do this, but he will not budge. Ah well, as you say it could be worse.

It is hard soutra - when I go out, OH acts fine and upbeat, but I know that underneath he is not happy - he always says "Please take care" as if he is concerned I won't return, and "Thank goodness you're back" when I get back. I do continue to go out and do things as I know I would not be much use to him or anyone else if I just sat about indoors.

You 3 ladies (and others) bring me down to earth and if I was wearing a hat I would take it off to you!
The solitary aspect of a poorly DH is for me that we cannot do anything like as much together as we had hoped to do in our retirement - indeed going out for a cup of tea/coffee or lunch is a major treat, but at the same time I have to restrict the amount I go "out to play" or he would be alone all day, He is a fairly solitary man and since friends moved to the neighbouring town I would say he doesn't have any friends nearby, but likes to have me around to talk to . He has also given up driving so relies on me for transport. I on the other hand like to have coffee with friends, have a chatter, a gossip even a moan at times, I like to go to Art History classes, Literature classes and generally be out and about. I would like to visit friends who live further afield, go to GN meet-ups, spend more time visiting DD and the DGC or going to London to museums and galleries, BUT I feel I do not have the freedon to do all of these, not because he makes a face, but because I know he would be on his own.
Heigh ho could be worse!!

You are a wise woman Mishap. Living with PD is so hard as I have seen with a friend whose late husband had it. to you and also Sparkygran. I have had 7 years to get used to the effects of stroke, but I still have very down days. I think it is worse when I see friends of our age going off on holidays or just for walks together. But self pity and regret are very corrosive emotions and to be avoided I know. "Always look on the bright side of life dee dum etc"

Yes I can identify with that - my OH has PD and he is getting progressively weaker. I am happy for him to do his own thing and live quietly while I am a bit more active - and he is happy for me to do that. The thing is to live in the moment and not hanker after how things were or what might have been if our partners had not become ill - there are good things in this new life and we need to rejoice in those and take each day as it really is and not how we had hoped it might be. I know that it is hard and some days I am not as good at it as others - but I forgive myself!

Yup! The parallel lives thing is familiar to me too. Possibly our relationship was different because we were both still working when he had his stroke. We had never built up that closeness that you and Mr Sparky obviously had/have.
Thinking of you

You are both so right Mishap and Purpledaf I had hoped a few months ago that watching programmes like Countdown would maybe help him with letters, numbers and words but that sadly is not the case. Funnily enough Purpledaf Mr S also enjoys Saturday Morning Kitchen something he would never normally have watched so when I think about it his viewing and radio listening has changed. In the same vein he really enjoys reading the papers but books are too challenging to his concentration.

I`m thankful that his enjoyment in watching all sport has remained and that gives him great pleasure.

Somehow now I at times feel I am living alone as he is doing his own thing in another room and we meet for coffee/meals/family/friends that type of thing but large parts of the day we are not together. We used to make sure in the past that we went out together once a week in the good weather for a run in the car with lunch or into town where I shopped and he watched the world go by and then a good lunch that`s all but gone now - its just too much of an effort at times.

Thanks for listening family should be in this afternoon so chaos will reign and I`ll love every minute of it.

You will be thrilled to hear that is yet another joy of aphasia Sparkygran. As Mishap has said, any programme demanding concentration and recall is going to be difficult. Mr Purple watches the news on BBC for at least three cycles of it, then turns over to Sky News to fill in the gaps. Even then, he often has misunderstood items as I discover when receiving my morning lecture Fast moving quiz programmes do not offer the same chance of repetition and so I suspect it is like me watching a programme in French where I would need to have things repeated and explained. Not going to happen is it?
My OH now enjoys things like Saturday Morning Kitchen which has lots of visual clues and no need to think too much. Until recently he also had an Eastenders obsession but thankfully that has gone

It must be very hard to watch a programme that demands concentration and recall, both of them things that may not be working so well for him. I am sure he is happy for you to enjoy it.

You are doing a hard job there and need to gve yourslef a pat in the back now and again.

Back in the Doldrums have suddenly realised DH isn`t watching some of what used to be programmes he enjoyed and the word "avoidance" has sprung into my mind.

We always watched together Countdown (I know what you will all be thinking but we loved it) and Question of Sport which started this week and repeated tonight I let him know about it and he wasn`t interested and wouldn`t be shifted.

I`m sure in my mind that it`s because he`s conscious that he can no longer participate and is opting out.

Anyone been in the same situation and could I be right in my assumption?

Just to let you all know I`m alive and kicking - was a wreck last Sunday but have picked myself up, dusted myself off and am out there giving it my best shot. The next morning DH greeted me with outstretched arms he knew I was so upset, we had a big hug and now its upwards and onwards.

However yesterday I had arranged for him to go out for coffee with an old friend of his but the weather was against us very wet and by the time I got him home he was a quivering wreck but am I deterred tomorrow we have friends coming in for coffee and chat and he will just have to put his best foot forward (that being his left foot - naughty me) and enjoy the morning.

to all you lovely GNetters