Caring for elderly parents? Drop in for support, hand holding and whatever you need

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It doesn't matter whether you are a hands on carer, care from a distance, or are just contemplating the future. Join us for support from people who know the struggles of becoming your parents carer - we rant, cry, and pick each other up.

Happy Christmas Dads (though it's more like a marathon of trying to make everyone happy really isn't it). It's hard to see parents' decline like your dm. That’s how mine was maybe 3 years ago . It's much less noticeable when you are one-to-one with them, the more people around the more confused they are.
We managed to have dm home with us for the day, returning her to the home around 10pm, so she was happy. For me it was a day of takibg her to the toilet umpteen times and hoping my teens were not wishing hard to be somewhere else like I was. Then I felt horrible taking her back to the home because she says she doesn't like it, and she thinks she has to stay there because I don't want her.
Bring on 2017, let's hope it's better!

Well, Christmas Day did not go well. My mother lives in a supported flat with carers going in in the mornings and evenings, mostly to make sure she has her medication. She is 90 and had a mildish stroke a few years ago, and has been getting more forgetful recently. Yesterday, as we normally do at Christmas, we cancelled the carers as she was coming out for lunch with us. I explained several times in the run-up to Christmas what would be happening; also on Christmas Eve I dropped in when my brother was there, and explained again that I would phone her before DH and I went to fetch her.

I duly phoned yesterday morning but got no answer - five times. We got there at around 11 to find the flat in darkness and my mother was in bed. I'm not sure if she was asleep, but she seemed not really with it and told me off for not ringing the bell - I never do, I have my own key. I asked if she felt OK, but she said she felt fine and wasn't feverish or anything.

When she got up it gradually became clear that she thought I was one of the carers - she demanded to know why I hadn't put the heater on (it was perfectly warm) and then shouted at me as I queried why she wanted it. She then turned to DH and asked aggressively several times who he was, clearly not listening when he answered. She's never previously failed to recognise us, but she didn't have her glasses on and I assume she has just come to expect that the person who turns up in the morning is a carer.

When she eventually worked it out, she still insisted that she didn't know what was going on, she didn't understand any of it, why hadn't the carers come, it was too cold to go out (it was unseasonably warm) and it was too dark or too late. She looked in her diary where it was all written down, but started moaning that she hadn't got next year's diary yet. She clearly didn't want to go out, but I couldn't leave her there as she didn't have anything for lunch: she normally has a cooked meal in the dining room where she lives and she wasn't booked in for it. She was complaining all the way out to the car, being rude again to one of the staff by ignoring her when she wished her Merry Christmas and moaning at other people that she couldn't cope. When we got to the restaurant she proclaimed that she couldn't possibly manage to walk a few feet to get in (a distance considerably shorter than, say, her sitting room to her bedroom which she copes with fine). By the time we got to the table everyone was stressed out.

Things improved a bit once we'd persuaded her to eat - she rejected her starter at first but then decided to give it a go - so I suspect a lot of it was down to low blood sugar. She was quietish but she stopped complaining, though she wanted to leave quite promptly once we'd finished. Ultimately she thanked us for everything and seemed quite appreciative, so I suppose we salvaged something out of all of it.

Ho hum. I don't really blame her for it, it must be horrible to feel confused and stressed, but what bothered me was how rude and unpleasant she was at the outset. If she's normally or even just occasionally like that with the carers, it must be pretty nasty for them, and I must say it's conduct that would have horrified her three or four years ago. I'm seriously wondering whether it's worth bothering to try to arrange any outings for her in future, she seems to have got to that stage where she'd rather stick to her routine - no matter how boring she normally proclaims it to be. I'm also thinking about asking her doctor to look in - I suspect it's mostly down to age, but I wouldn't want anything like a UTI to be missed.

Well done for doing your best Notmy. It's so hard to know what to do isn't it?

Oh my Zaza and Notmyname - the confusion is just awful to witness. It is when they're out of routine, that's the worse. All the time everything is done at same time, the same way etc there's stability, it just needs something "different" (i.e. Christmas!) and it seems to throw them. And yes Zaza - the poor teens, I've tried to plaster smile on and keep humouring them!

Noits - how's your dad doing?

Hi everyone. Just dropping in to wish everyone a happy Christmas and distribute virtual cake and sherry.

I'm sorry that so many are having a grim time. My sibling and my [cantankerous, self-obsessed] mother had a massive falling-out before Christmas, so that put everyone in a jolly mood. Or not.

Sorry More but somehow that made me laugh! You also made me think about sherry so now I'm having one

Dadsa I let the teens do a lot more TV/computer than normal because it was all so tedious! We used to ban tv at Christmas.

That's ok, ZaZa, I think one needs to be able to see the funny side (although it takes a very dark sense of humour sometimes). Enjoy the sherry!

And, actually, what my sibling said was rather harsh but not untrue. It needed to be said, although just before Christmas was maybe not the best time. 2017 has to be different to 2016.

Frankly, I think doing whatever it takes to get through Christmas is totally the right thing.
Of course I feel guilty as we didn't go to mum and dads, but we did that twice and it was hell - poor ds was stuck in a car for 4 hours to be there 2 hours of mum poking food around, dad shouting, and no one having fun. We had the PIL today which is a whole other story!

So sorry to see that several of you are struggling through I agree - do whatevery it takes to get through.

We are off to see DM tomorrow. Not sure if the visit will be just to her Nursing home or if we wI'll take her out for a drive. She didn't sound so good when I called on Christmas day - not sure she knew who she was talking to and she was very quick to end the call rather than show her difficulties holding any sort of conversation.

I'm new to this, my mil as just suddenly got Ill, she lives with bil and pil who work full time so I'll be taking over when they go back to work.

Will probably be spending most of the time trying not to cry, like I did when I saw her the other day.

Thanks Zaza, Dadsa, I agree it's a lot to do with being out of routine. It's a shame really - there have been times this year when I've dreaded the prospect of going to see my mother because she was spending so much of the time moaning, but over the last two months or so she's been more cheerful. I hope this isn't the start of a regression to past form.

But I also agree that you need to see the funny side. Once when my mother was complaining, she said how terrible it was that she could go on like this for another 60 years (numbers aren't her strong point these days) and I wouldn't want to be going round there for another 60 years either. As that would take me to around 120, I could only agree.

My dm recently estima her age at 300!

Estimated!

Hello hope all are well, dropping in to ask question but please don't shout at me...has anyone put a nanny cam type camera in homes to see who is in and out? My FIL is getting through quite a lot of money every week, he is housebound so he isn't going to the shop and I always know if he has ordered take away food as it's there for me to clear up the day after. He has a couple of young lads who drop in and he has them shop for him, I know he has lent them cash before but the family are worried he is getting money pinched too (Disclaimer-as a family they can overreact a little/see the worst in people a bit)
My thought was a camera in the porch so we can see who is in and out but FIL still has total privacy as its a little room seperate to house -we can se who is in and out at all times- but the idea is rapidly escalating to talk of putting a frame camera in the living room, I am torn between thinking its a good idea as we know what is going on but also suspect it could open a can of dramatic worms.
My other thought was to get in touch with the council and explain I am worried he has given copy of key to someone outside family, get lock changed then just replace key on his ring without saying. We have lock box for key so there is no need for loads of copies making for family
Has anyone needed to take measures like these? How did you handle it?Please feel free to tell me if we are overreacting but do be nice, my nerves are shredded with Hubby being obsessed with the situation

I don't know what cameras would prove, other than who is going in and out? It wouldn't prove where money has been taken/given. Have you thought about getting power of attorney which may help if you think that he is being taken advantage of?

Do you live nearby, shortscotty? Can you take charge of his money and do all his shopping for him? Or arrange it online?

I am trying to get POA organised with hubby and his siblings, they don't seem to get that if anything happens and I am there I have no say-I must chivy them along. We are going to try leaving him a certain amount and ensuring the door is locked when we leave, really hoping that it was because he gave money out as gifts for Christmas and now thats done we can have more sight over what he is up to
thank you for responses and hope all is going well as can be x

Notmydon't worry, that type of behaviour is fairly normal for a carer to come across- had you not added the type of care setting I wold have been convinced that you were related to one of my clients
Short it may be ok unless you plan to have carers in. We are allowed to refuse to work in houses with cameras, and my experience is that this does happen. The main issue is that you forget that they're there and fart loudly in another room !
All the best to anyone looking after elderly people over Christmas.

I spoke to the OT who'd carried out the cognitive assessment on my dad last week - he scored 65 out of 100 on the addenbrooke's test, with his short term memory and executive functions particularly badly affected. Googling tells me that below 82 in a hospital setting is indicative of dementia .

We'd always hoped that my dad wouldn't have to experience the long goodbye of dementia but it's obvious not to be... the awful(?) thing is that his body is relatively healthy for a man in his 90s so we could have another 5 years of this, maybe more with no prospect of it ever getting better and gradually, inexorably losing the father we knew and loved

Sorry Noits, it's hard to hear that news - I know exactly how you feel.

I thought by now I might have some peace as dm finally got placed in a care home that deals with dementia a week before Christmas. However she appears to have contracted a UTI as soon as she got there and although she's been on abs for 5 days or so she's getting worse. The carers there have never seen her normal (as she was the week before she went in) so despite all my discussions with them they seem to think she's an advanced case. Apparently she doesn't sleep but wanders all night, disturbing other residents, is agitated and sometimes aggressive, and will never settle down, always getting up to 'find something'. With me she's not at all aggressive, just relieved and happy to see me, but she is talking a lot of rubbish about little men, big blocks of ice that are dangerous and that horrible woman who mistreats her. I don't suspect the carer of really mistreating her because dm is hallucinating all sorts of things, but it's a bit scary not knowing what is true and what isn't of what she tells me. Imagine I ignored her and she really was being mistreated.

I guess all I can do is wait for the UTI to be properly dealt with and hope she settles after a month or two. I'm visiting 3 - 4 times a weeks and feel a constant sense of doom, especially when arriving, wondering what sort of tales I am going to hear.

Oh dear Noits and Zaza - dementia is cruel and it is hard to know what is an accurate picture of your relatives abilities

We went to see DM and she looked well, physically, but was it was virtually impossible to understand what she meant about anything - she was going on about men coming in on toilets and kept shouting RED! and shouted at a poor visitor to "turn around and show your face" and various other things. I didn't see anything that remotely concerned me about the home - I think you really have to say what they say with a pinch of salt and trust your gut instincts. But it's not easy to know.

Zaza, DM picked up a UTI, started phoning the police about her missing husband, wandering off and all sorts of things, when she first moved to her sheltered housing. It took a good month before she orientated herself sufficiently to know which flat was hers. It must have been hugely stressful. It apparently takes a couple of months.

One thing I did, which really helped, though depends whether your mother can still read, is write down answers to her frequent questions in the form of a briefing note. Where was she. Why. How long (till she was "better"!), did she have any money?

The carer at the time said she frequently read it and found it very reassuring.

Thanks BTM and Need. Unfortunately her eyesight is badly impaired and she can't read notes even in large letters on a white board - though I still use it, hoping the carers will read it for her. We bought her a little gizmo we can record messages on too, and all she has to do it press a large button to hear it, but she forgets about it and can't remember what it's for or see what button to press. She's totally reliant on people telling her things over and over again.

Hi everyone, I just need to offload the stress of the past 2 days so i'm back here, hope that's OK. On the 29th there was a call from dad's care home saying he had an infection and they'd transferred him to the local hospital. A and E were gloomtastic: he's septic, hypothermic (31C), not likely to live another 12 hours. I made the difficult decision not to go then as it was 8pm, don't have a car, would have got there at 11 by train etc. Yesterday morning he was still alive, I went down, again the staff were pretty gloomy (kidneys packing up, chest infection) and I got a priest to bless him, and also enquired about whether he could be transferred to hospice as the environment on the ward was hectic. This morning he's been transferred to a medical ward and interestingly they've suctioned his lungs (which I had originally requested and they'd refused to do) and say he is a bit better. I have decided not to go today as I need a break form the adrenaline roller coaster, and will go tomorrow, amazingly the trains seem to be running to a normal schedule on the 1st of Jan. It's hard living with this level of uncertainty .