Dilemma and unsure of the way to go.

[Guest]

Hi all.
I have been caring for my wife Mary since last February , and I get some universal credit as I'm on half pay which comes to and end on the 23 of February. I have been offered I'll health retirement or a career break, not to sure which way to go, if I take I'll health retirement I'm guessing I will lose the small help I get from universal credit and have no job to return to, if I take a career break I guessing I will lose universal credit as they would say I have voluntary taken time out of the workplace, the career break would be 12months and if, ( hopefully will be ) Mary is still with us I will still be unable to return to work and therefore lose my job. Any help would be appreciated if anybody has had to make this decision.
Mary was diagnosed in October 2017 and given 2 years, bulbar palsy / onset ALS , she is now 63, I'm 60 so I have 7 years of working life left.
Yours
Tim and Mary

[Lynne K]

I don't know what to advise but see where you are coming from Tim. Maybe have another talk to Mary's neurologist or specialist nurse or even MND Connect. At least MND Connect may know where to point you for advice or to talk your options through. Good luck. Lynne

[Kayleigh]

Hi Tim,

It sounds like your employer is trying to be understanding and helpful by giving you different options to consider concerning your employment. However, I can understand why it's not straight forward for you to decide what to do.

If you took ill-health retirement, you might be entitled to receive benefits on top of your pension, but this might depend on how much your pension is.

I am not an expert on universal credit, but looking at information on the Government's website, you might still be entitled to receive universal credit, even if you took unpaid leave for a career break - because you would still be on a low income (but you would still need to meet certain criteria to receive it).

There is also a benefit called 'Pension Credit', which you might be entitled to receive in the future.

I have provided links to the Government's information about these benefits, below:-

http://www.gov.uk/universal-credit

https://www.gov.uk/pension-credit

You may already be receiving Carer's Allowance - but just in case you aren't, here is a link to some information about it:-

http://www.gov.uk/carers-allowance

I wish that the benefits system wasn't so complicated! You have probably got enough to deal with without having to worry about financial issues. You might need to get some independent financial advice, and there are benefits advisers at the MNDA and Citizens Advice, who you may wish to contact:-

http://https://www.mndassociation.org/getting-support/benefits-advice/

I have read your posts on this forum, and I think that you are a wonderfully kind and thoughtful gentleman, devoting as much time as you can to caring for Mary. From your avatar photo it looks like you are very loving and devoted couple. I feel for you both because it must have been heartbreaking when Mary was diagnosed, as it was for me and my husband when I was diagnosed. I am very blessed to have such a kind and caring husband to look after me. It sounds like Mary is also also very blessed, with you caring so wonderfully for her.

It is never easy to plan for the future, especially with the difficult situation that we currently find ourselves in. I wish you well with your decision making and I hope that everything works out as well as it can for you.

Love and best wishes to you and Mary,
Kayleigh x

[Guest]

Thank you Lynn and Kayleigh.
Thank you for your kind words, not sure I'm wonderfully kind, I'm just doing what any husband or wife would be doing in similar situations, and I'm sure your husband would agree.
I have now been in touch with the MNDA cab and had a few things clarified for me, and I'm going to speak to my social worker and hopefully come up with a solution within the next couple of weeks. The Ill heath retirement would, I imagine , take me over the 16,000 pound limit for universal crddit, but I could then lay down the deposit for a WAV. I could get a grant from motorbility but would rather try to do it myself if possible plus paying off the credit card, this I think would take me beneath 16,000.
I do receive carers allowance and the information I received was that as Mary's full time carer I'm not obligated to work or stay in employment, so if I take an unpaid career break it shouldn't become a problem, but after 12 months, if I am still unable to return to work my contract of employment can be terminated, which means I'd lose the payout for ill health retirement, which would be financially very helpful at the moment.
Thank you again and best wishes Tim and Mary xx

[Kayleigh]

Hi Tim,

It sounds like you are already making good progress with your financial planning. If your employer hasn't already provided you with an estimate of what your pension would be if you took ill-health retirement, it might be worth you asking if they can provide you with one. A pension estimate might give you more of an idea of where you would stand concerning your eligibility for benefits etc.

It sounds like you are being kept very busy, but doing all this research should hopefully give you peace of mind that you are making the best decision concerning your employment.

I hope that Mary is OK and that she is as well as can be expected. Hopefully you are OK too, and I hope you are getting enough time to sleep and relax.

Hopefully, there is some support for you from family and/or friends close by.

Best wishes
Kayleigh x

P.S. From reading the posts of carers on this forum (including yours), I think that you are all wonderfully kind and caring- and you all have hearts of gold!

[Guest]

Hi Kayleigh.
Mary is doing fine, and always seems to be smiling, except when she gets tired and then it's lots of tears and tantrums even though she is on citalipram for her emotional liability.
For me, I just hate my cooking lol, which is very limited at best anyway.
I have a baby video monitor to watch her during the night as she has to sleep downstairs in the hospital bed, so a good night's sleep is impossible as I'm constantly checking on her during the night.
The research seem to be pointing towards taking the retirement offer as I'm pretty sure that I can get a job back in horse racing as a yard man when the time comes, bit to old now to start riding out again.
Got an appointment to see my social worker next week so hopefully we can begin add up all the pros and cons.
The woman I spoke to from the MNDA was very helpful and if I have any questions I, or my social worker, can contact her to get clarification on anything we aren't sure about..
unfortunately our daughter lives in cirnwall, about a 5 hour drive for me these days as Mary hates the motorway, so apart from Mary's support team which we see about once a month and a carer coming in for 3/4 hour each morning Monday to Friday I do everything, usually I have Mary washed and dressed before they get here as Mary likes to be up at 8.30 and the care help arrive about 9.15, but it's a different face I guess and gives me the chance to nip up the shop for the paper.
All our best
Tim and Mary.x
PS
Like you I think all the carers posts I have read on here are caring, kind and unconditional

[chrissie57]

Posting rather hesitantly as I am sure you will be receiving good advice and I am certainly not an expert but if you were to take the retirement option and considered 'paying off the credit card, this I think would take me beneath 16,000' the DWP may look on it as deprivation of capital - credit cards are not priority debts and although companies can make life unpleasant there is little they can do to force payment.

'Scuttles off again'

[Kayleigh]

Hi Tim,

It's good to hear that you have got support from a social worker and that you have also been able to get advice from the MNDA. It sounds like you are making some good plans, and the possibility of working with horses in the future sounds great.

I am glad to hear that Mary is doing fine. I can relate to what you have said about her becoming upset in the evening. I can be OK and cheerful all day, but sometimes I suddenly get fed up in the evening - I think it's because everything seems so much more of an effort to do when I am tired. Like you, my husband does the housework etc that I can no longer do. I am ok doing a bit of cooking - but I would be lost without ready meals and the microwave!

It sounds like you get very little help from carers. Hopefully, in the near future, you will be able to get more help from carers, because 3/4 hour a day is not much time at all for you to have a break.

I have family who live at home with me and am fortunate to have other family and friends who visit occasionally. I admit it can all feel a bit isolating some times, and so I am very grateful that there is this forum and the monthly meetings of my local Mnda group are always good. I get a lot of support and advice from my local hospice - the people there are always very kind and understanding.

I hope that your financial planning continues to go well.

I hope you have time to watch some rugby at the weekend. Me and my husband are looking forward to watching England v France on Sunday.

Very best wishes to you and Mary,
Kayleigh x

[Guest]

Hi Chrissie.
I'm very grateful for any input and that's a valid point. I'm just trying to work out the best option and a lot of the time I feel like I'm swimming in very muddy waters. How do women, run a home, bring up children, and work ? . Just trying to care for Mary and keeping the house tidy is enough to keep me going all day without the cooking ,washing, shopping and bringing up kids as well, I must have left stuff out there but I hope you know where I'm coming from.
As for going below the saving limit, it's more that I just don't think I want to go through all the hassle of having to reapply for UC , although I've since been told that if I inform them within six months, all I need to do is log back into my UC account.
Best wishes
Tim and Mary

[Guest]

Hi Kayleigh.
Another sleepless night lol.
I know exactly what you mean about feeling isolated, Mary was diagnosed with bulbar palsy onset ALS, unable to speak ( for about the past 10 months ), can't use her right hand, luckily ( if that's the correct phrase ) she is left handed so can communicate by writing things down or use easy speak on her iPad, can't walk unaided ( Zimmer frame ) ect. A lot of the time she says it's like living in a prison cell just staring at the same four walls and watching TV. I do take her out in the wheelchair when the weather permits for a walk around the village so she can get some fresh air and meet people , but if I could get a WAV I could take her for little outings for the day, she loves the wildlife park which is only an hour away, that's why I'm leaning towards the retirement option I think, the WAV.
Also as she can't swallow and everything is pegg fed ( by myself ) so I only have to cater for myself, so it's usually oven ready stuff or a sandwich and a tin of soup, no doubt I will be told I must eat properly, but at the end of the day Mary is my main concern and I have to try to make her life the best I possibly can.
I know there are a lot of people in a worse situation than I am on here, but even as a carer I sometimes feel alone, I think the worst part ( except for Mary's condition ) is the lack of conversation and social life.
Sorry I went on a bit there.
Best wishes
Tim and Mary

[Guest]

Hi Kayleigh.
Another sleepless night lol.
I know exactly what you mean about feeling isolated, Mary was diagnosed with bulbar palsy onset ALS, unable to speak ( for about the past 10 months ), can't use her right hand, luckily ( if that's the correct phrase ) she is left handed so can communicate by writing things down or use easy speak on her iPad, can't walk unaided ( Zimmer frame ) ect. A lot of the time she says it's like living in a prison cell just staring at the same four walls and watching TV. I do take her out in the wheelchair when the weather permits for a walk around the village so she can get some fresh air and meet people , but if I could get a WAV I could take her for little outings for the day, she loves the wildlife park which is only an hour away, that's why I'm leaning towards the retirement option I think, the WAV.
Also as she can't swallow and everything is pegg fed ( by myself ) so I only have to cater for myself, so it's usually oven ready stuff or a sandwich and a tin of soup, no doubt I will be told I must eat properly, but at the end of the day Mary is my main concern and I have to try to make her life the best I possibly can.
I know there are a lot of people in a worse situation than I am on here, but even as a carer I sometimes feel alone, I think the worst part ( except for Mary's condition ) is the lack of conversation and social life.
Sorry I went on a bit there.
Best wishes
Tim and Mary

[shrew]

It be must be so hard for you. A wav would help enormously. My late mum had alzheimers and had to go into a home when she was falling all the time (not long after stopped walking). We bought a second hand wav in 2011. She passed away Oct 13 but we kept the vehicle. It is a 2007 fiat doblo, it has room for the chair and 4 seats (often they are converted so only 3). We only paid about 5k at the time. It meant we could get Mum out to Mass , local parks , places for a coffee etc. Its probably worth nothing now! but as a family we all use . I think it would be lovely for you both to get out and about .

[Lynne K]

I'm also wanting a WAV Tim and Shrew. I have a motability Ford Grand C-Max and my light weight travel wheelchair gets lifted in and out by the 100kg hoist that I had fitted. Unfortunately my powered wheelchair is too heavy for it at 124kg. I love the countryside and a WAV would enable me to go out with my husband where he wouldn't have to push me. I've been saving up for the up-front costs on a motability WAV, potentially from £3500. But two problems put that at risk. First I need to pay most of the cost of my soon to be purchased dual motor rise and recline chair. I cannot afford both the chair and a WAV. Secondly, I will have to buy a new rear passenger seat for my current car seeing as my husband spilled a tin of paint on it back in November. I don't know how much that will cost. Also, I'll need to pay Ford Motability in Bury some compensation for ending the 3year contract very early. I haven't had the car a year yet. I paid about £1424 up-front cost for that. Are there any charities about that may help with my up-front costs for a WAV? Thanks, Lynne

[Deb]

Hi Tim and Mary,

Firstly, Tim you are doing a wonderful job of caring for Mary. I agree that all the carers on here are so selfless and amazing. It is so hard to watch someone you love struggling and getting worse and things must seem even harder when you have had a sleepless night. You probably know you should eat properly but it's hard to motivate yourself to cook for yourself, I suppose.

It would be really good for you and Mary to have a WAV and get out and about, even if it's just for a drive. I can get really low if I have not been out, like last week when we dare not risk the snow and ice. Theres too much time to think and daytime TV is enough to make me want to cry, anyway ! Hopefully you will be able to get out when the weather is better.

It sounds like you are getting lots of advice about finances.My husband was lucky , if that's the right word , to take his pension early but we did see some advisors about the future and and spoke to the MNDA.

Best Wishes to you both.
Love Debbie x

[Ellie]

Hi Tim,

Just a thought...

When you say you bring Mary out for walks locally, do I take it she has a manual wheelchair?

If it is, given that Mary is weight bearing and can use a zimmer, I wonder if she could transfer into the passenger seat - with the aid of transfer turntables if necessary - until you sort out a WAV? (Turntables can be used tohelp Mary transfer from a wheelchair to the car seat, then to swivel her legs into the footwell once she's sitting down)

If she has a powered chair, maybe her OT can provide a transit chair for now and you can at least get out for a drive and go further afield for your walks.

Love Ellie.