Hello everyone, I thought I would share with you my situation, as I am unsure as to what to do in the long term. Any comments/advise would be gratefully received.
Im currently 51 and have worked all my life. Last September my wife suffered a stroke. She was in hospital for 2 months, and now needs some looking after. Mainly dressing, washing, preparing food etc.
I have continued to work, but its proving quite difficult.
Her daughter visits a couple of times a week, but its difficult for her as she has to get her kids off to school and then walk over an hour to get to our house.
I was hoping that my wife would improve, but her progress has stalled in the past few months, and I think that maybe she wont improve any more.
She currently gets PIP full rate.
My work have helped a little, they have offered me 1 day a week working from home in November through to February, our quieter period.
I find the thought of giving up work and living off benefits hard to contemplate, but it might be for the best.
Im not sure what to do for everyones best interests.
Did the hospital arrange a Care Plan for her before discharge?
It’s really important that you keep working but don’t burn out.
Social Services should be supporting you so that you can keep working.
Have they done a Carers Assessment for you, and a Needs Assessment for your wife recently?
Tell us more.
It’s unreasonable for her daughter to walk for over an hour to get to your place. What will happen when it’s icy?
Has she never learned to drive?
Can she drive but no access to a car?
Once your wife has had a Needs Assessment from Social Services, they should say how many hours care she needs. Then she should be offered “DIRECT PAYMENTS”. She will be offered the equivalent amount of money to arrange the care herself. So then she could pay her daughter, as long as she wasn’t on benefits herself. If this idea sounds interesting, talk to our Carers UK helpline for more details. It could be a win/win situation!
Hi Russell
have you got appointments for:-
Stroke clinic
Speech therapist
Chase up on them.
Stroke club
Also find and get in touch with the local stroke club who will have a lot of advice and help for you both.
My mother has had several mini strokes - TIAs
A former colleague said to celebrate any minor achievement and keep things fun.
Sleep - the stroke patient is recovering from a brain injury and sleep is important,
It depends on how severe the stroke is, but try to keep your wife stimulated when she has the energy.
My mother has lost her concentration/short term memory for complex tv, she prefers comedy and things like bak off, mock the week, QI etc.
Keep trying to stimulate the brain - the will to recover, the determination of the patient is key, the will to live and thrive and return to as near normal is a big driver.
It is hard work and a stroke can be demoralising, it doesn’t just happen to your wife, it happens to you as well.
Encouragement, fun, little goals - childs puzzle books, childs puzzle apps - pre school, infant school level if she is at ground zero - the former colleague started there.
There will be plateaus but it is important to be positive and not to stagnate or give up.
Encourage, congratulate, get the feelgood flow going.
Thanks for the replies.
On the financial side, I assumed that if I did give up work, then PIP, carers allowance and universal credit would be our income, are there other possibilities?
With regard to her recovery, she can walk around the house with a stick, and outside she uses a wheelchair. She only has the use of one arm which is probably the most difficult thing for her.
When I go to work, she is on her own unless her daughter comes. She can make a cuppa and some toast, but that is about it.
Like you say, stimulation is the key, and I feel I could give her more if I didnt work.
Its a real dilemma for me.
Russell
Keep working, it gives your wife time to rest and sleep which is important for stroke patients.
She needs some respite from you, some peace and rest.
Your employers are very accommodating but you might be entitled to more - have you looked into carers rights at work - reasonable time off to chaperone to appointments etc.
You are caring for your wife more than 35 hours a week, you classify as a carer.
At work you have respite, you have money going into your pension, holiday pay, sick pay and leave, you don’t get that on carers allowance, you get your NI stamp paid and just over £67 a week.
Have you had social services for care needs assessment for your wife and carers needs assessment for yourself? Carers allowance is taxable but if nothing else, get yourself registered through them as your wife’s carer and advice from them about your rights at work.
Please do go onto the stroke website and contact a local club because the person running it will have a lot of helpful information for you both.
There are charitable services that have sitting services for a few hours a week, I don’t know if you qualify with you being at work but it is worth looking into, someone may have knowledge and links.
The sitter doesn’t do any medical care but could partake in chat, puzzles and games to engage her brain.
Have they said anything about physio for your wife’s arm? Chase them up about it.
Does your wife enjoy things like jigsaw puzzles? do you have a table where one can be left out for her to work on? Easy ones that are achievable not those worlds most difficult ones.
The important thing is to set little challenges. If she can manage a 100 piece puzzle (and enjoys them), try a 200 piece next. Small stretches that challenge dexterity and concentration, interspersed with rest breaks. Things she can do for herself.
Can she dress herself? If you’re having to help her with buttons, find tops that pull on. My wife wears sports bras nowadays because normal bras rub on her scar. But they are much easier to pull on than the hook and eye rear fasteners. Elasticated waistbands might be more useful than fasteners and buttons and zips. But while it limits clothing choices now, it also promotes your wife’s independence. She can do this, rather than relying on you. Better still, it takes the pressure off you.
I’m all for making life easier.
If you have not shopped much online for womens clothes before, I would recommend Lands End.
Their initial prices look quite high, but if you sign up for their emails, put something in your “basket” but don’t buy immediately, they will start sending you offers. At the moment. up to 70% off.
Their UK site has lots on offer, but their American site has far more.
I live in the New Forest, very casual lifestyle, so I wear their polo shirts almost all the time.
I’m a fan of their cotton polos, but for ease of wear, they do some very light stretchy but pretty tops. Whenever I go on holiday I take some, they weigh very little and don’t crease.
Carry on as normal. If she has not had one request a needs assessment pronto.
Hi Russell
Try the bonmarche web site. There is a local shop to where I live. Great garments from about twenty five years to the much older clientele. Super quality and very inexpensive. Well worth a look.
Good luck
John
Also go online to Bonmarche and register for email alerts, they have lots of sales and discounts and reviews from customers regarding quality.
They often have promotional days in the shop eg 20% off so it is worth waiting if you don’t need the items immediately but when the offers are on you need to be quick if your wife is a popular size.
Some items vary in quality the past couple of years but there are some items my mother has had for 5 years and still doing well.
Their range used to be for the mature market and older but they have widened their market and range.
Delivery is free to collect from the shop or home delivery is free over a certain spend and it is free to return unworn, undamaged items to the shop with the receipt.
I can’t speak for all branches, but our local one is very helpful.
Also Stitch Fix.
Thara
With respect I don’t stitch fix have suitable clothing for someone who is finding it difficult to dress.