STROKE VICTIMS WIFE

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!!

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.

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.

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

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.

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?

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.

I have realised I mean Attendance Alowance!

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 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!

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!

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!

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.

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.

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.

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!

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!!!

Roll on tomorrow - finally managed to track down the Community Stroke Team who worked with DH for 3 months following his stroke his GP had referred him to be reassessed for a walking aid following a bad fall and loss of confidence in walking outdoors of course that was 3 months ago and I have chased it up but no luck long waiting list anyway had a bright idea about CST and with difficulty managed to find them and the physio is coming out tomorrow with a Rolator (probably not spelled right) so hopefully DH will enjoy getting out again provided he can work the thing!! Will have a [cuppa] too early for

Sparky, that's why people complain about there being too many pensioners. We take up over half of the welfare budget. Wait until they start means testing the state pension! Won't be until after they have our votes at the next election, though.
Good luck tomorrow. Hope the rollator works, whatever it is.

Yipeeeeeeeeeeee we are the new owners of a Rollator (durhamjen you may not know what it is but you spelled it correctly) a very positive visit from physio who was impressed with DHs progress since seeing him some months ago and gave some useful tips on improving his gait and bulking out a knife to enable him to perform some simple tasks eg buttering or I should say Flora-ing his toast. Silent tears are spilling down my cheeks into - guess what - a large glass of possibly the first of a few

Fantastic news Sparkygran. I too don't know what one of them is, but great if it makes a difference. Good too that the physio could see an improvement. When you live with the condition, you don't always see the improvements do you? and to you both.

Today DH went off to the start of a new term at Speech Therapy Group with his Rollator (it`s simply a triangular walking frame) and in 24 hours he with it`s help he is walking straighter by this I mean in a more upright position rather than crouched down watching where he is going and the tip from physio re starting to walk using his good leg his gait is really and truly better. Such simple things can make life so much more pleasant. Am on the white wine tonight as its sunny.

Oh so that's a Rollator! So glad it is helping him so dramatically. Perhaps we need a white wine emoticon for the warmer weather

What a good idea Purple

Just a quick update since the advent of the Rollator one of the Community Stroke Team has been out to see DH to see how he is getting on with it and it doing what I had hoped it would given him a real boost to his confidence when walking outside the visit also resulted in him starting a few sessions with rehab assistant to work on his right hand. Was given info on cutlery to enable him to hopefully be able to use a knife and fork again. In the booklet I saw a mug with a handle I felt he could manage so have ordered cutlery and mug was in stock and I am amazed to say he has quickly cottoned on how to use it and with a small tear trickling down my cheek as I type (jesting) have watched him use his right hand to life mug and drink his tea. There`s life in the old dog yet!!