Support for those who care for elderly parents - drop in as you need, everyone welcome

[CMOTDibbler]

All of us would rather not be here, but we need to be - with the people who really understand.

Things gone a bit pear shaped over the ocean. We discussed her having a scan whilst in hospital, I assumed a CT scan which she had before and was quick and easy. Phone went 7am to say she was in the MRI scanner and had been put out. Too late to say anything at that point (but quite at anaesthetic )so just said please let me know when she comes round.

Had a great catchup with a lovely MNetter this morning. Arrived home after to find a missed call so rang Brother. When they'd brought her round she started screaming they were trying to kill her and she had to be restrained.

She's been put out again and is some kind of low level ICU place and they'll try again to bring her round tomorrow. Only good thing is she has had a hefty dose of antibiotics whilst under for the cellulitis as was refusing them.

Oh no. I am at them a) doing an MRI and b) putting her under a GA. My mum has had terrible reactions to GA, even dating to the point when her dementia wasn't otherwise obvious when she was very confused for 5 days after.
Getting a really good dose of antibiotics in IV is a silver lining though isn't it. Heres hoping that things are better tomorrow.

TheSandwich - I used HomeInstead for mum and dad before they had a regular carer during one of their crises, and they were good, but I think it depends very much on the franchisee

Oh SPT that sounds so tough- hope tomorrow is better. But nothing you can do so look after yourself. CMOT- didn't know it was a franchise. It is a jungle trying to find care!
A day here trying to get the monkeys back to their owners..... After a week including taking dm for a chiropractor visit, shopping, collecting stamps etc, taking dm out today,doing her shopping..... Plus juggling work/ house/ Dd's internship/ work and Christmas prep. Db then requesting additional pressies for his boys which threw dm despite all their other requests already being ordered by me........ So texted him and told him to phone her... Grrr... And no one mention ukuleles!

Brother went in today and she had come round but was restrained plus had plastic bottles or something over her hands as she had been bending the nurses fingers back plus sank her nails into them.

She's stopped screaming plus now isn't restrained. One more night in the ICU type thing then normal ward plus discharge Monday. She now has Ebixa plus an anti psychotic.

Brother sat her downthis week and told her to stop manipulating and that if she continued to make her legs bad (nearly healed) then he will treat it as self harm and measures to counteract will be put in place.

She told him to stop talking to doctors without her or she will cut him out of her life . He pointed out he is her carer so she'd have problems with that and she did the cats bum face and did her hmm thing she does.

Crikey SugarPlum She must still have some strength to do that. Well done to your DB - she's quite a handful, isn't she? I guess she was just as manipulative when she was over here, but was she aggressive too or is that something that has developed more recently? Dementia related?

The aggression is new as she is losing her ability to manipulate and control what's happening. She was just as manipulative here which I was aware of but my Brother believed her not me, so all hell let lose. At least finally he knows too plus the carers and everyone on the same page. She is and always has been , the most difficult woman I know.

SugarPlum, I guess that means she was very manipulative when you were growing up too - must have been very difficult for you. At least now your DB knows the truth and it sounds like the carers/hospital will be able to manage her - you have done your bit and thank god it is now their turn x

Yes I think she was but didn't see it at the time as had been conditioned to accept it I guess. We're still dealing with the fallout from her ways as she spun us a load of rubbish about my Dad and partly due to this my Brother stopped speaking to my Dad and they are estranged. She created havoc with her side of the family too. It is awful how much damage one person has done to so many others really but it is what it is now, not sure some of the rifts she created will ever heal. But I have said to my Brother it stops here and must not carry through to the next generation. He has been very damaged by her, I'm the lucky one.

Oh SPT what a challenge for your brother- but it sounds like some opportunity to stop the damage continuing. I am so glad that you can observe with some detachment from a distance.

She's out of hospital. Very slurry apparently so assume a TIA or post anaesthetic issues. He says she is broken and a very sorry sight so he isn't going to send pictures as says I don't need to see that. I vageeky argued that I should but gave in quickly, Drugs are working to keep her calm. All quite sad really.

I'm sorry SPT. A good idea not to see pics. But hard to think her spirit -,- however difficult- is diminished. She is strong- she may rally. It is early days. Take care.

Well, following 2 confused phone calls from DM (and 1 OK one!) I have been in touch with AgeUK who have suggested a different Care Agency. I have just spoken to them and set up a meeting, sadly not until 28th Jan when I go up again as obviously they aren't doing meetings over Christmas - I am hoping that we can get carers who DM will actually bond with to some extent as the current situation isn't really working

Sorry to hear your dm is not coping BTM, hopefully the new agency will be better.

We're off to see my parents tomorrow which will be difficult. Ds asked me why I was so worried about finding the right present for mum when she wouldn't pay any attention to it

I bought her a fleece poncho which zips right up and has a hood as easy for the carer to put on her in the wheelchair and will keep her hands warm as getting gloves on her is tricky now. Dad has a leg wrap for his scooter, a picture and a bottle of knock off Archers

They sound like great presents, CMOT

It's all the uncertainty that gets me - not knowing if she is OKish most of the time, not knowing what the next step will be... And with me being so far away and no one to really turn to - really need her to engage with the carers, but she is so fiercely independent and judgemental

I'm sorry BTM, it must be very stressful from a distance. it's taken a few people on here a couple of goes to get the right carers, makes a difference with the right ones. Can totally relate to the fiercely independent and judgemental, that's exactly how my Mother was. What are her gripes about current carers ? I think the sometimes confused and sometimes fine is a vascular dementia thing.

They sound like really lovely presents CMOT, the poncho is an excellent idea. I got really stuck and had to get present to Thailand so it is just a small token really, tube of nice hand cream.

We're supposed to be Skyping Christmas Day. I'm sort of dreading it and also looking forward to it as will get to see my nephew at same time.

BTM I had to go through 2 agencies before being 3rd time lucky with Dad. His last agency enabled him to stay another 2 years at home. They weren't prefect but on the whole very good, and really committed to his quality of life. However I did not find them alone, the local NHS dementia treatment team found them. Well done on getting Age UK to help, I hope the new carers are the right ones.

I am very lucky - although 95 my mum has no dementia or physical impairment, still fully mobile/continent etc. But she is temporarily living with use and is very hard of hearing and finally finally had agreed to a hearing aid, which we were getting this morning, but the hospital cancelled the appointment at the last minute.

Gutted! In fact, I cried a bit. It's such a small thing but having to shout and repeat everything and have the tv at 10000 decibels all the time is so so wearing.

But reading all this I am counting my blessings. She's chosen to go into a home after Xmas which will be wonderful.

BTM. I have this T shirt. The agency made me feel like I was a pest, but at one point I realised therre were no laundry costs on the sheltered housing bill. Her sheets had not been changed for months.

I used to feel quite sorry for some of the carers. They were clearly rushing from one appointment to another, and even if I paid for more time, moany carers would only do the minimum as their next client might need more than was being paid for. And one or two appeared to be in minimum wage jobs because they were not able to think through things or take responsibility. It was so difficult trying to sort it from a distance.

I was lucky to come in one day to find a carer sitting on the end of my mum's bed having a good chat to her, who was then able to discuss in an informed way strategies to get my mother to do things. It is this carer I now employ directly. I pay her enough that it is worth her negotiating time for a private client with her new employer.

It has changed my life having someone who will do things like buy my mother new clothes when she needs them or put Christmas decorations up in her flat. My mum assumes she is a friend, in part because she now no longer needs to wear a uniform, which is lovely at a point when her real friends are inevitably dropping off.

When looking for an agency I would:

1. ask how many other clients they have in the area. If there are several it means there is more likely to be a regular carer who sees the same clients every day. (If she is in sheltered ask them who other people use.)

1. take note of their assessment procedures. I briefly got a second, national, agency in after the carer left the first, and was impressed by their systems, especially around accounting for the cash left in my mother's safe.

1. be very clear what you want done. Weekly check of bathroom supplies (toothpaste etc), laundry procedures, check fridge, and so on. And how this is reported back to you. Agencies always seem to use a book. It would be so much easier if it were digital and accessible on line. (With a diary function so you could add in things like the boiler service, doctors appointments or planned visits - but presumably all too difficult.)

1. ask about the scope for additonal hours, say to escort to routine medical appointments like flu jabs and and blood tests.

1. quiz them on how they approach potential problems like, say, personal hygiene. My mother told me she did not want a shower because it was too cold. I checked and the water heater was indeed off. Carers needed to turn the water on, but then did not think to check it was at the right temperature. Then easier to note, for several days, that she was reluctant to take a shower rather than try to work out why.

That's really helpful MNS, thanks - I am keeping your tips to use when I meet the manager!

The problems with the current agency are that she has had 14+ carers since last April/May (and they only come twice a week) and they are mainly/all youngish girls that DM thinks aren't really very bright/a bit common/not really interested in her hobbies, etc. She needs someone who she engages with. Obviously!
The added difficulty is that I am 200miles away, so I just can't get to know the actual carers.

Purple, that must be very frustrating. Fingers crossed it can be sorted asap.

SugarPlum, it will be lovely to Skype and see your nephew at least

I was putting ds to bed earlier, and was talking about tomorrow. 'I don't want to go' wailed ds. On further probing, he said 'but Grampy doesn't talk to me now, and grandma doesn't talk and I can't even go off and play with the toys now as grampy doesn't buy any now'. My heart broke for him. All I could say was that it wasn't fun for me either, but we owed it to them for all the good times in the past

Oh CMOT

Oh CMOT. Your heart must be breaking. I would use lavish bribery as thanks to your ds. And plan a treat for you. How are you doing?
And to you all- SPT,BTM,nms and everyone- hope you find some moments of joy in these challenging times. Be kind to yourselves.

I have offered a game of pool with dh at the pub (we are only allowed to have curry as thats the special offer on a Wednesday), unlimited tablet time in the car, and a stop at Starbucks on the way home.

I am, I have to say, a bit meh at the moment. But I stood up to PIL and said that we would not be coming to theirs until everyone came back from the pub on boxing day as it wasn't fair on ds - last year he and I sat for 2 hours in their house as its not a pub for under 16s. So as of 12 on Christmas Eve things should be lovely and relaxed until Jan 5th.. Bliss. But my marathon training plan starts Dec 27th!

I'm sorry CMOT, that must have been hard to hear and I hope today goes as OK as it can do. Well done on making a stand with the PILs, I hope after Christmas Eve it is relaxing.

Very impressed about the marathon !

Your offers to DS sound great CMOT. And well done for standing up to PIL. But marathon training?!