advice about carers

[OldJohn]

Not an elderly parent but this seems the best place to post.

I’m looking for a bit of reassurance, or whatever, from anyone with experience of carers.
My wife and I are both 77. I am fit and healthy she is not. She had cancer ten years ago and since then has had two lots of heart failure and most recently a suspected stroke. She is also showing signs of dementia.
We live together in a first floor flat. We have a stairlift.
For the past couple of years, she has been using a Zimmer in the flat and a wheelchair outside. We both enjoy going out to the local pub or such. We also have a caravan which has a lot of handles fitted so she can move around in it safely.
I help her with a lot, I dress and undress her, take her to the toilet, she usually manages to wipe herself but if not I do it,.
The hospital are talking about arranging a care package for her. Has anyone any experience of care packages. I can’t see how it can work, if she needs the toilet she needs to go now, not in three hours when the carers arrive. My other worry is about going away in our caravan, we both enjoy it but if we have carers coning in how can we go away?
I just think caring for my wife is part of our marriage and why do we need anyone else? I did ask if we could have someone come twice a week to help her shower, more to make sure she does shower as at present I struggle to get her to agree to a shower even once a week. I was told that Social Work only provide Critical Care and showering is not critical.

Any advice will be appreciated.

Are you able to fund carers yourself? Normally if you have more than £26000 you will be expected to pay.

It certainly used to be common to have carers that did exactly what you said - showers a couple of times a week. I'm sure a private care agency would be able to offer this. They can't force her to have a shower but are normally very skilled at persuading reluctant people.

If someone is unable to use the bathroom independently or with the aid of a partner they may either be expected to use a commode if they can or incontinence pads if not.

If you are still able to manage to go away in the caravan then you can just cancel carers - you may need to pay them.

Age Concern have a telephone helpline - I would suggest giving them a ring to chat all this through.

@helpfulperson As far as I know funding is not an issue as care is free in Scotland I should have said where we live.
I agree though that paying for carers might be one way forwards. We could probably afford it and I'll ask a couple of local agencies about private care.

A care package would be something like a carer coming in for 45 minutes three times a day. So, they would shower and dress your wife and give her breakfast. Lunchtime they would warm and serve her food and take her to the toilet. In the evening they would get her ready for bed and maybe make a sandwich or give her a cup of tea. If necessary they could put her to bed. Be aware, that you can’t stipulate what time they come, only request.

You sound very much like my mum with my dad - she did everything for him as his dementia and mnd progressed. She felt it was what she should do, as his wife, and was what she wanted to do. Unfortunately, it will only get harder, so please consider taking what they offer and, if you wish/are able to fund it, pay for extra. We found it very hard to get social care involvement, outside of the hospital contacting them to organise something (in England, at least, you might be in a different position in Scotland), and so I urge you to jump at this offer, even if you're not sure you need it right now.

Mum was offered, and took, 4 respite hours per week, which we're, very soon after they started, the only time she was able to leave Dad, unless she organised family to sit with him. It was a huge relief, and meant that, when she had to organise (and pay for) more care, she knew the company, and carers, and felt far more comfortable having them in their home.

If you go away, and can give them advanced warning, you may not have to pay for those days (although this will depend on the company).

Sounds like your wife would be able to claim
Attendance allowance and if awarded you could claim carers allowance, you could use that money to employ private carers and they would be more flexible with your times and wife's needs.

You are so so lucky to be offered this for free! I am sure you can ask for more details.
I would see this as an extra pair of hands, to give you some respite… You can still be a wonderful husband in other ways.

My own father cared for my Mum in a similar way until his own death aged 87. He did it out of love, of course, but he would have had a much easier retirement had there been more help. (In the end she did have occasional care for the last year and is now in a Care Home). But it must have been a huge strain on him by the end, even though he never would have said.

Is she in hospital at the moment? How has this suggestion come about?

The normal procedure is that the social worker/care organisation speak to you about what would be useful and helpful to you both, and what you would both appreciate. So if what you need is help with showering a few times a week then that is perfectly doable. And while you are away the care is paused.

You won’t haven anything arranged behind your back or imposed on you.

Caring for your wife is part of your marriage, but as she becomes more dependent you will need extra hands to give her the care you want her to have, and to make sure you’re rested enough to care for her safely. You won’t be able to do it all - you already would welcome a bit of help getting her to have a shower (my late FIL was exactly the same - carers could cajole him into the shower and he loved it, but would only do it for them).

Maybe see what’s being offered?

I help her with a lot, I dress and undress her, take her to the toilet, she usually manages to wipe herself but if not I do it,.
The hospital are talking about arranging a care package for her. Has anyone any experience of care packages. I can’t see how it can work, if she needs the toilet she needs to go now, not in three hours when the carers arrive. My other worry is about going away in our caravan, we both enjoy it but if we have carers coning in how can we go away?
I just think caring for my wife is part of our marriage and why do we need anyone else?

There's quite a lot to answer in your questions but the main thing I wanted to say is BE VERY CAREFUL about your last sentiment about wanting to care/why do you need anyone else - because the problem is that the creep from being able to manage - to struggling - to being unable to cope/burnt out is almost imperceptible because it changes so incrementally.

If you want to keep someone in their own home you need to plan ahead.

I care for an elderly parent full time and I now have caring assistance. Looking back, I was like you and thought 'why do I need help' but by the point I got help honestly it was far too late. Usually because it's not until you are desperate that you start to look. This is unhealthy for both carer and patient.

Your question about going to the loo/what if the carer isn't there - a carer can do lots of things as her condition and ability declines - including washing her private parts, washing her hair and so on. This is all hard work and the greater the need the more time consuming, physical and harder it becomes. Getting help earlier rather than later is key.

You say if she can't wipe herself you do it - these types of issues only increase and there is something to be said for letting a professional deal with it and you going back to being her husband first and foremost. Caring for someone 24/7 is tough. At the start its all manageable and you think it's all ok. I ended up nearly exhausted and broken as it had become too much for me and my life is much better now I have help. Don't be me.

There is much help around if you look for it. The main thing is to make sure you get good carers - experienced, NOT newly qualified, if she has dementia is it 100% essential the carers have dementia experience as this is a very specialised skill, and people who see it as a vocation. There are a lot of very bad carers around unfortunately who are just doing it to get a wage and want to be somewhere else. don't accept this kind of treatment.

If she becomes incontinent or even just has occassional accidents, ask your GP to refer her to the bowel and bladder service as you can get help in terms of free pads and other advice if necessary.

I think it is out of my hands, the hospital will arrange carers to come four times a day. I agreed that this will be good. The advice on here has helped me a lot.

If it’s affordable ( ours were cheaper than agencies) You could always get a self employed carer too. To sit with your wife or maybe take her out an afternoon or two a week so you get a break and don’t get too worn out. If dementia has set in and she’s able there are also dementia clubs ( where we live anyway) where they are dropped off for half or a whole day to have fun and do activities Good luck and best wishes

Ex carer and also full time carer to my (late) mum and my dad. Also in Scotland.

In my experience it is easier to start using carers slowly if you can. It is perfectly possible to only have carers a couple of times a week for a shower. As a carer you have the legal right to be consulted on your wife’s care and what would suit you both best.

Dad started with a short visit every morning to help wash his legs and put on his stockings. It has increased to a longer morning visit to help with washing/dressing and an evening visit to take stockings off and help him change to PJs. I do all meals, meds, shopping, washing, cleaning, ordering meds, liaising with care company, dr, etc etc etc! If any personal care needs doing in between the carers visits I do that too.

However much you love your wife, sometimes it is good to have a break from caring responsibilities. it is definitely in both your interests to start carers before you need them, rather than in an emergency (you get ill/go into hospital etc) so that you and your wife get used to the carers and they get to know you both/where everything is etc. if you need extra visits to help with lunch or tea that can be added to the care package. You may also be able to move the timings of the visits as other slots become available and you learn what times suit you.

Mostly my dad quite likes his carers, it is someone different for him to talk to, and he can complain about me to them, and them to me which gives him something else to keep him busy 😂

Thanks,
I was smiling when you said about dementia clubs. I do a lot of voluntary stuff at a local church. There is a men's dementia group who meet there once a week. I often seem to join them for soup and a sandwich.

One big advantage of the volunteer work is that I get away and do my own stuff. It might be repairing something, sorting the timer for the heating or painting a wall but it is good.

The hosptal are arranging Social Work carers four times a day. That should be good depending on the times. I saw an expected discharge date of 8 November on the notes but I am sure that may change.

You can't claim both state pension and carers allowance at the same time. And state pension is more. So in effect if you're claiming state pension you can't claim carers allowance. Attendance allowance is well worth having though.

My wife gets attendance allowance, we use part of it to pay for a cleaner once a month. I have looked at claiming carers allowance and can't for some reason, maybe because I get an extra bit on my pension as I worked past my 65th birthday. .

You're not allowed to claim carers allowance if you're receiving any other benefit, and state pension counts as a benefit. So the fact you're receiving state pension means you can't receive carers allowance/