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Advice needed - Carers UK Forum

Advice needed

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I'm sorry if this post goes to the wrong place, I couldn't see how to register and how to create a new post, and apologies for not being able to offer any advice myself yet, this is my first post.

I'm 57 and the main carer for my father aged 91. My stepmother died in August aged 97 and he lives on his own the other side of London from me, and won't have anyone come in to help, because he can just about manage his activities of daily living. There seems to be a grey area between the time when elderly parents can "just about manage" and when they can't (and don't want to admit that they can't).

I've asked for a carer's assessment for myself (the local borough told me they have to assess him as well, even though he was assessed in August and refused help) because I am struggling to manage looking after myself and carry on working (I have long term mental health conditions and recieve DLA). I know I won't be eligible for Carer's Allowance because I don't spend 35 hours a week physically looking after him, but I spend time every day helping him sort out his financial, domestic and health matters, and spend a day with him every fortnight giving practical help with cleaning toilets, paying bills, gardening, repairs, shopping etc, as well as taking him out for a meal. It takes at least an hour and a half to get over to him. He had two falls in the summer, and was hospitalised after one.

I don't know if I am just being a whinger and scrounger, and expecting help where there is none. I worry about his safety and mood, and that I might end up back in psychiatric care myself, because he doesn't have any other close relatives to call upon, and I also live alone without any close family.

Neighbours help when they can. I've joined my local carers organisation and have regular counselling sessions, but I've stopped all but one of my unpaid social and leisure activities. I'm self employed and work unsocial hours, and am about to take some time off unpaid to catch up with everything before I go completely crazy.

Any help or suggestions on how to keep managing to look after Dad and myself would be much appreciated.
Hi Frances and welcome. Im sure the mods will move this to an area where it will be better seen.

First of all, Im so sorry this has happened to you. It is difficult when you are thrown in at the deep end.
When claiming for carers allowance, it doesnt have to be just the physical caring side that counts. Cleaning the house, going shopping, sorting out finances, making him a cup of tea, all count. The best rule of thumb is - could your father do this for himself if you wernt there or does he need you to do it for him? If he needs you to do it, then it counts as caring. Ill bet that when you add it all up it comes to more than 35 hours a week. He does have to be claiming Attendance Allowance before you can claim for Carers Allowance, though, so if he isnt then I would claim on his behalf. You are also only allowed to earn £110 a week - although there are ways to manage this if you are a bit over.

I know what you mean about the "grey area" when they really could do with more help, but will refuse it. If he can afford it, then you can get people in on a private basis to help with caring. Maybe the place to start would be with hiring a cleaner, which is usually more acceptable and will help you too.
Dear Crocus

Thank you for your helpful reply, especially your rule of thumb about what counts as caring (ie anything that I do for him because he can't do it by himself). I've downloaded the form for Attendance Allowance and pencilled in most of the answers - I hadn't realised that he has to claim for this before I can apply for Carers Allowance. I wasn't aware of the income threshold either (I have been assuming that I wouldn't be eligible so I hadn't looked into it further). I do earn more than £110 a week though, so perhaps this might rule it out. I'll sit down and make a list of everything I have been doing for Dad over the past couple of months that he hasn't been able to do for himself, so that I am prepared to answer questions in assessments. :)
Hi Frances, I've got a 99yr old on my hands so I know what you are battling with. As far as carers and/or cleaners are concerned, what worked with my Mum was me saying that I needed the help for me. That I couldn't manage so much any more. This might work with your Dad as his pride will be saved if he thinks he is accepting help for you, not himself.
Have you got Power of Attorney in Place? Might be another high wall with Dad if not, but if you can manage the cost, and dad agrees, then believe me it is well worth it. That way you will have control over his finances when he cannot manage them, even with your help.
Has Dad got a personal alarm? That's a pendant, (worn around the neck for example), which he can press to summon help should he have another fall. Depending on LA, this could be free or be for a small charge.
Financially, if dad has less than £23,500 (or so) in savings, investments etc, then Care should be free. If you get that attendance allowance for Dad, (not means tested), then you can spin a bit of a yarn by telling him you have got some money for him but some of it must be spent on a cleaner/carer.
When it comes to assessments, tell it as it is. Don't let dad, or yourself, say anything like 'well I can manage that'. (even if you can/do). Plus, unless you are thinking of moving Dad into your own home, or vice versa, don't let them have the slightest suspicion that it could happen.
When it comes to time spent 'caring', add on the travelling time. I'm not certain that it counts, but give it a whirl.
Let us know how you get on.
Hi Elaine, thank you for your understanding reply. Another friend yesterday said something very similar along the lines of telling my Dad that I need the help for me, so that I can stay sane and able to care without getting ill myself. I have all the paperwork for Power of Attorney and have filled most of it in and discussed it with Dad, and have made appointments with solicitors and legal advisers.

He does have a personal alarm which belonged to my stepmother who died in August and wears it when reminded - but then doesn't press it when he falls because he doesn't want to bother people! He has a cleaner, but only for 2 hours a fortnight, yet he complains about having to do so much washing up and clearing up every day. I'm going to suggest she comes every week.

I think he really needs a personal assistant to pop in for an hour a day to help him get organised and prompt him to take medications and change his socks etc. He would have to pay for care, at least until his savings run out. It wouldn't be practical for him to move in with me as I work from home, have a very small house with steps everywhere, and am supporting my goddaughter's family by letting them stay in my second bedroom from time to time.

I totted up all the time I spend on supporting my Dad and it came out at an average of nearly 20 hours a week, including travel time (which is a 3 hour round trip). No surprise that I'm really tired and falling behind with my own work! I'm taking some time off this week a) to catch up with practical stuff at my own home b) to read over the Power of Attorney and Attendance Allowance paperwork and c) have a bit more rest. I'm planning to bring him over to my home for a day out at the weekend. I do try to remember the good moments with him as well :)
Hi there and welcome to the forum.
Your situation is similar to the one that I was in with my dad. I gradually took on more and more, was 30 miles away from him and holding down a job. Dad passed away two years ago, he was 93.
Good advice from others re PoA and AA. One thing I will add is about the falls. There is always an underlying reason for falls and it might be appropriate for these to be investigated further. In my dad's area there was a 'falls clinic' that did a complete MOT on him (referral came from from GP). This not only alerted us to his health needs but prompted other services to get involved too and flagged up to Dad that it wasn't always wise to struggle on alone. He used the Lifeline alert when necessary when he realised its worth.
Good luck
Hello Juggler, thank you for your encouragement. He did have a physio visit for rehab exercises after his falls, although he was reluctant to do the exercises (he couldn't see how they would be more helpful than just walking around, so I did my best to explain), and the hospital did check him over thoroughly, but couldn't find anything sinister. He seems to expect to carry on as he has always done, not wanting to admit that his strength, balance and mobility are not as reliable as they once were. My stepmother died after a series of falls, the final one resulting in a fractured neck of femur and her death two days later. Frustratingly, I had put a commode in her bedroom the week before so she wouldn't have to turn and walk down the corridor to the loo, but she wouldn't use it, and was on her way to the loo when she fell. It's so sad watching the decline of parents who were once in charge of all their faculties (she was a GP) and Dad worked in medical physics, but now he doesn't seem to be able to think at all logically. Anyway, thank you again for your support.
Hi again Frances,
First thought - have you tested that personal alarm lately and have you informed them that it has changed hands. It could be a bit drastic if it no longer worked.
Secondly have you been in touch with an Occupational Therapist? Dad's GP might refer him if you can't get the right response by calling up. My Mum and I have an on-going relationship with Liz, our OT. Mum has had grab rails, a raised toilet seat, walking aids, commodes, shower seat, bed raiser, 'hospital' bed, slide sheets, trolley, standing aid, standing hoists and ceiling hoists. Not all at once and not all at the same time but all on free 'loan' from our LA Equipment Service. Any of those of use to dad? (Probably the grab rails at least). Well worth getting him on their list.
Thirdly, any continence problems yet? We have a local Urine and Continence Clinic which I called, arranged an appointment and they came, assessed Mum's problems - only slight at the time- arranged for her have pants at night, and now years later she receives a supply of 'Tenna lady' pads, which she wears day and night, on prescription.
Fourthly ( I do go on-sorry), If my Mum had one carer for just three hours a week, say Mon, Wed and Friday, it would cost her just over £40 a week. Unfortunately she now has to have 2 carers at a time, to get her up, put her to bed and toilet her another twice daily, plus one carer for an extra hour a day and it costs about £700.00 a week, which is very rapidly going through her savings. I spend an average of six hours a day looking after her myself as well. Plus shopping, washing and ironing, paying bills, filling in forms, liaising with all the services, which I do from home (when I am actually at home). I didn't expect still to be doing this when I took over Mum's care when she was 90!
You are doing all the right things with AA and POA etc but you do need to start getting that care in place. Better to start small and get Dad used to it rather than suddenly finding you need the lot, all at once.
All the best.
Hi Elaine and thanks for the reminder about the personal alarm. I did inform the company that it had changed hands a couple of months ago, but I need to remind Dad to test it once a month - probably best to do it while I'm there! We already have some grabrails in various places, partly supplied by an OT for my stepmother when she was alive, and one fitted privately in the shower because I didn't know how long it would take via the OT service. They were helpful when my stepmother was getting more frail, and have already assesed Dad, but he doesn't want to put into plan any more of their recommendations eg ramps. He has faecal incontinence and it has taken me a month to get action on investigating this, despite informing his GP in person. The Community Matron assessed him last week and said that the Incontinence Clinic would only supply pads, and he will only wear the pull-up pants as they are more secure and go round the back where the soiling comes from. So I have been ordering pullup pants via Age UK. He is due to take stool and urine sample to the GP this morning to investigate the cause of the worsening incontinence. He's also about to have a blood test to see if he is also suffering from heart failure - at least they are coming to his home to do it.

I agree, starting small with introducing care is probably the best way to go, so Dad doesn't feel his independence being threatened. It's so difficult though when he refuses stuff. But I am going to try again this weekend to have that difficult conversation with him - I will let him know that I need him to have more care from other people in order to help me stay sane and well enough to continue caring for him. I know many people have much greater challenges to face than I do, so I am very grateful for this forum and for all the support I have received.