I am helping my wife who is 42. She became Unwell 3 years ago with a hiatus hernia and since surgery has become even more unwell with paralysed stomach, daily vomiting, and breathlessness and limited mobility. She needs special foods prepared and can’t get out much.
She has also lost her job/career as a result which was very traumatic for her.
It has been a shock for both of us for her to have lost some of her independence so quickly and so young. She is slowly getting used to the identity of having a disability and neither of us are completely used to the idea that I’m her ‘carer’ now.
I work full time in a demanding job. Although I’ve been signed off for 3 months now due to burnout and stress. The doctor wants me to look into a needs assessment for my wife but due to my salary and me saving up to renovate our ancient bathroom and other home improvements, I don’t think she will get any financial help. Is it a waste of time getting needs assessments and carers assessments when we won’t get any financial help? I don’t want to waste anyones time .
I’m glad to have found this forum and other people facing challenges like we are. I’m struggling getting the balance right of helping my wife and caring for myself.
Caring is tough, and anything that might help is a good thing. An assessment might come out as saying you don’t particularly need any specific physical help, or the (later) financial assessment might mean you have to pay. But as part of the assessments, they have to make sure you have information about other support and advice services, including (for example) help from your local place of worship to be able to attend services, local carer services or disability groups that are relevant and may have members/workers who can give useful tips you’re not aware of.
And while that may not seem like a lot, every little helps. I’m in contact with my local carers centre, another carers service and (obvs) Carers UK. At the moment I don’t need anything else. But I also know that this is something that could change drastically at any time. And a good Carers Assessment will discuss what might need to happen in an emergency.
welcome to the forum. It’s my understanding the financial assessment can look at your joint savings or just your wife’s savings in her own right. I think you should seek advice on this. If the bathroom fund is in your name etc then that shouldn’t be taken into account. However this isn’t my area of expertise, I suggest you contact the helpline
Our telephone Helpline is available on 0808 808 7777 from Monday to Friday, 9am – 6pm or you can contact us by email (> advice@carersuk.org> )
Thanks for the replies. Maybe I should look into it a bit further. We do feel a bit lost a sea! We could use some help finding about small aids and equipment that might help - my wife is increasingly struggling with walking and standing, and I worry about her getting dizzy and potentially having an accident. Maybe a needs assessment could help give us some ideas?
If you need aids, contact Social Services and they can arrange for an Occupational Therapist assessment, and then, as Greta has already said, they can be provided on long term loan through Social Services.
In my area, Hampshire, Health and Social Services have a joint equipment store and deliver at least once a week to all areas of the county. Use this visit as an opportunity to ask for any suggestions at all, to make life easier for both of you.
The Occupational Therapist will also be able to advise as to the most suitable kitchen and bathroom arrangements.
Under some circumstances you may be entitled to a Disabled Facilities Grant, I can’t remember the financial limits for that I’m afraid. Ask Google.
If you have under £46,000 some help will be available from Social Services for daily living. You can choose if the financial assessment is jointly or individually, which may make a difference, but Social Services sometimes forget to tell you this!
Thanks BowlingBun. I am starting to think I’ve completely misunderstood all the financial side. I thought because we are married they would take into account all my own sole savings and add up everything in both peoples accounts. And we have nowhere near £46k. I was worried because (temporarily) our combined savings are close to £23k - as we have saved for specific home renovations that I have been too stressed to get the building work started on)
Looks like I need to phone the helpline as suggested to get my facts right!
Good question but it’s hard to know what help could look like.
Definitely sounds like we could get some advice with bathroom arrangements and small aids.
My wife can’t do any housework chores, cooking or laundry etc. I’m doing all that. Plus driving her to hospital appointments. Helping her deal with pharmacy. She can usually wash and dress herself but occasionally struggles during a flare, or occasionally too weak to get out of the bath herself. She vomits frequently and I have to clean all that up. Emotional support obviously. Reminding and promoting her to drink, eat, take meds sometimes. Helping her walk if we go out / carry her stuff /catch her when she wobbles. Unless she is having a bad flare I do leave her on her home at home but I worry about her fainting or having an emergency, or even forgetting to drink water.
I work full time and have been struggling with exhaustion and stress/ burnout. My wife says she is fine and not to worry. But clearly I’m struggling on some level. I just don’t know what kinds of help to ask for.
As Bowlingbun says, the Occupational Therapy team at the local council can be very helpful. They provide small aids you need, and they can also advise on other things even if they can’t provide them. My brother was self-funding (it doesn’t sound as if you would be). When the OT first came in years ago they immediately had some boards put up all the side of the stairs to hold on to, and in due course installed a ceiling hoist. The best thing was them thinking it all through from our point of view. They did suggest a through-floor lift, but this wouldn#t have taken a wheelchair - still, we did investigate it. And yes, consult the helpline here.
If your hospital appointment letters offer patient transport, see if she qualifies for that and arrange that, ask for hospital chaperone for her if they offer chaperone services.
Also advocacy services if your wife can’t get chaperone and the advocacy can take notes in the appointment if required to and assist with asking questions, if that is available.
Try an email to your citizens advice also for information and advice about things like advocacy service and hospital chaperoning.
Dial a ride - if that is in your area could be useful for hospital transfers.
Have look into carer status at work and the allowances for that to set it up.
Have you got an emergency alert pendant/alarm system in place? that’s something to look into
Do you have Alexa or similar? you could tell it to remind her to drink water if you have it but if you don’t then it might not be worth the expense of it.
I’ve seen there are some water drinking bottles that remind you to drink.
There are also digital clocks that you can set reminders into them.
There are various charities that do a sitting service, companionship for a few hours a week or fortnight, they don’t give medical care but you will know that she isn’t alone for a few hours and the person with her can remind to drink and can phone you if there is any concern.
If you have a district nurse/community nurse visiting then you can ask them about aids eg a meal/drink trolley, walking frame, bathroom seat, shower seat, toilet frame to hold onto, kitchen seat etc and they can get occupational therapy out to you and might be able to order some items themselves depending on your area and how they operate - our nurse ordered a few things direct.
thank you for all your ideas and encouragement