Support for those with a parent suffering from dementia. Pull up a chair and talk to those who understand

[CMOTDibbler]

There seems to be lots of us here struggling with someone close that has dementia - be it Alzheimers, Fronto temporal, vascular, Picks or any of the myriad others.

So come and chat with those who know how it feels to have to choose a meal from a menu for their own parent, what its like having small children and a demented parent at the same time, and how you explain to children just why grandma says such odd things

Lots of typos , Sorry, on phone.

MrsF I'm sorry, all sounds totally nightmarish

We're not doing any better here. She's just text saying to ring me but then couldn't answer the phone. Had to get the front desk to get her. Told me to come and pick her up. Frantic call to brother, agreed we can't just leave her. She's booked in for assessment at flat Tuesday hopefully admission end of the week but when I said you are going to the flat I got a we'll see.

Bugger

Oh Mrsf and wyken ...sounds awful

Wynken ...was so hoping you were going to have a relaxing week.

Are you going to get your mum and take her home ??

I could be completly out of order in saying what I am going to say next as dad is not in the same "situation" as other parents .

He lives with mum and I am 5 mins away....and I am worried about giving advice or my views because of it ...but here goes ......

Wyken ...you had a text to say to pick her up and your brother said /agreed you can't leave her .

Is he going to be doing the running around till something else is sorted??

You are going to be back to square 1.

Could you not just hang on for the week If you really know this is best for her ??

Really hope some things gets sorted for you

To be fair my Brother's immediate reaction was that she would have to stay but as we talked it through we realised we can't make her stay. She'd have found a way to get a taxi plus had her cheque book that she can just about use. Then she wouldn't speak to us again.

She's booked into for assessment at the flat in nursing home on Tuesday morning with a view to going in end of the week. DH, Brother and me all firm on this needing to happen. Brother has said if she refuses we say ok, who will look after you, Wynken won't be. When I said about the flat she said 'we'll see'

We're going in a minute but have set ourselves a target of being home by 4pm. We're both going to feign illness , dodgy curry last night and plan the seed that we might no be able to bail her out if anything happens. I am to be ill with various ailments a fair bit the next few days if she refuses to go to the flat. I did ring the emergency SW but he wasn't particularly helpful as she has capacity. But he said to ring the Duty Officer tomorrow.

If you look at last couple of weeks she's not drinking enough, climbed a stepladder, had a TIA and was stuck on floor for 6.5 hours before calling help. I suspect I could argue she is a danger to herself. Wish we'd got in earlier with the sodding Health POA.

I ll echo bizzey, wynken. And likewise, i really don t want to be offensive but it sounds worrying. You were at the end of your tether and she wasn t safe. Her going back home will be predicated on you being on call. Are you feeling guilty about her being in the respite place? Of course She will want to be at home for as long as she can, but it is all conditional on you making the necessary sacrifices to maintain her there. Why not hang on another week? Get the rest, and give her more of a chance to get used to being in a new place.

Thing is if the phone line had been working she would have gone into the flat in the first place. If we'd have left her she would have created merry hell and made the care home ring a taxi. As it stands at the moment we can't keep her her there as legally you can't against someone's will without having a Deprivation of Liberty I think it is. Care Home agreed as it stands we can't make her stay so we picked her up. I did ring SS first but they were spectacularly unhelpful .

I feel a little better today as I've had some sleep as I know the end is in sight. We felt given we don't have the power to make her stay it was better to get her home so relationship doesn't totally break down then persuade her into the flat. We've told her she is going Thursday as long as assessment ok and she's made agreeing noises, though I think there is a big element of humouring me going on. Brother to speak to her tomorrow when she's had a night at home and be quite clear she is going to the flat and can not stay at home so we are finally agreement.

If she refuses to go voluntarily then I will ask for her to be assessed under Mental Health Act with a view to her being sectioned if it is agreed that she is a danger to herself. I've started a thread about being a danger to yourself and have spoken to friend who works in Community Mental Health (not with elderly), she's a manager of some sort. She said that what I had told her (didn't say about Meds as didn't know she hadn't taken them then) was in fact enough to certainly ask for assessment and she added we're talking Mental Health Act. I said isn't there something where if someone says they understand the risks of staying at home then can't be forced , she said there's saying you understand and really understanding.

She said it is very hard to predict outcome and has had cases where they were convinced client would be sectioned . I've cancelled hairdresser for her on Wednesday and will use that if needsbe to get her into the car, she was asking when we're going next and wants to go. I'm pretty sure one way or another as long as the assessment is fine and they will take her, sh I'll be going on Thursday. Please don't worry about saying things, I totally get wher you are coming from. I feel a surprising sense of calm about it as she will not be home more than a few days and I sorted a stack of paperwork this morning.

Oh Wyken...my heart goes out to you ...I am sorry for speaking out of turn earlier and saying to keep your mum where she was .

It did not cross my mind about the legalities of things like this ..sorry .

Glad you are feeling calm ...and hope you do not have to go down the sectioned route

to you and your family x

Bizzey please don't be sorry, I know you're all worried about me. Before she realised what was up with my Mum the OT told Mum she didn't need to worry, no one could make her leave her home. She seemed to find a new sharpness on the Galantamine, though signs this is wearing off a bit today. She knows full bloody well she doesn't have to do what I say.

My Brother's immediate reaction being that she can't come home was music to my ears as for so long he had been against her going. I have found a new steely determination after a couple of days slight break and a sleep and I will get her into that flat. Hopefully she will realise it is her best option. If she won't then I am going to call in the cavalry. She has always been fiercely independent and difficult. Even the Consultant who diagnosed her said that she was stubborn when she was out Of the room. She was never really going to go without a fight and I've always felt there was a strong chance she would be sectioned.

If that is what happens then so be it. It will not be my fault. One of the Carers in the Home said what lovely family she had and how people get dumped. She did think about that and say she was lucky, Brother has said that we tell her there will be no family support if she doesn't do the flat. I think there is a chance she'll have a last ditch attempt to cling to her house then give in and accept the flat is her best option. If not then I know what to do. My one fear is that they would say she isn't bad enough to section.

When my mum was in convalescent care she did not have easy access to a phone. She packed her bags one day are tried to walk out. They would not let her go on the basis she was not safe. Next day the bag was in her room, packed. She had forgotten why.

Your mothers decisions affect you. Profoundly. Her dementia will have reduced her self awareness. She wont remember how scared she was the other night. She wont understand how selfish she is being. She is simply focused on clinging onto her old life.

Once moved, and assumimg she is happy which she probably will be, she will start to forget her old home and perhaps even want to return to an earlier home.

If ypu can make yourself unavailable. She calls. You listen and then say you are busy. Keep emphasising she will need to use the pendant. Make very clear you wont be around to the extent you have been in the past. Talk about a three week holiday you are planning. Be brutal and say you are applying to have her committed. Suggest under those circumstances her options may be limited to locked facilities. (Actually worth checking with the flat on that one.)

You wont want to abandon her at home. She will not be safe. You wont be able to cope as her care needs increase. Your kids deserve more. Like all of us what she wants and what she can have are two different things. Because of the dementia her demands are unfiltred by common sense.

Another time if she demanded to be brought home I would have said that you would pick her up but not until the next day. By then she might have forgotten.

Crikey Wynken - just catching up with your nightmarish couple of days and Mrs FW too.

I don't have any good advice really, just sending you both my sympathy.

Wynken it is such a shame she can't relax into the home for a bit and give you all some time to sort things out. I'm glad your brother seems more on board now with the difficulties you've been encountering though.

MrsFW, have you looked at any suitable places near you? How far are you from your Mum and your DSis at the moment?

Another knackering weekend for me - but nothing awful. Mum looks exhausted but is cutting down carer time, which I just don't understand. The grass was ridiculously long everywhere, but my brother had been around for the weekend & hadn't touched it, so I wasn't about to. Their bloody dog ate my home made cake, which nearly brought tears to my eyes as I thought about how I tiredly made it after a week at work on Friday evening.

Dad sleeping very badly at night and waking for extended periods, which I think is driving Mum slowly towards insanity. I don't know if there is anything they can do about this. The biggest problem seems to be that he wants to go to bed at about 6.30pm, he then sleeps very heavily until about 1am and after that is wakeful and restless until about 4am. He then wakes up properly between 6.30am & 7am. It is killing Mum, as she can't go to sleep at 6.30pm, so doesn't fall asleep until 10.30pm ish and only gets a couple of hours before he wakes up. He is then trying to go downstairs, go to the loo (even though he has a conveen and pads fitted), trying to walk around and just generally drive her nuts. I wondered if Mum could wake him at 10.30pm and give him a sleeping tablet to try and get him to go through the night?

I spoke too soon about Brother. I just outlined a few facts to him about the situation in an email to clarify things before he spoke to her and email came back sayng no good going nuts. I wasn't, just stating facts, the reality of those facts are just unpalatable. She usually talks a good talk on phone and he is fooled. His friend's Dad had Vascular Dementia so now having spoken to him he is an expert and has decided she'll live two years

Went to GP this morning as still feel like have UTI. Fortunately my Brother's email arrived whilst I was in waiting room and the anger made me tearful. Told her everything, sh has sent me home to ring SS.

Meanwhile Carer on phone, can't find one packet of Meds despite being written in book that discontinued. Spoke to Mum who is pretty confused. Told her no Carer as we are looking at flat she is moving in Thursday . We'll see about that she said. I have messed up, we shouldn't have brought her home .

Would your mums GP sit down with you and your brother and talk about things?

When you get her to the flat don't jump to any demands to go home - prevaricate, make excuses that its too late, delay till next day - whatever it takes to get her to stay longer, then she'll settle down. And remember that demands to go home can actually often be really 'I'm confused, make me feel safe' rather than actually going somewhere.

Had to laugh yesterday - mum complained she'd got a new pattern for a jumper but the instructions weren't in english (my translation of 3 minutes of speech). It is in english, she just can't understand.

They had a letter on Saturday giving her an appointment for a head ct (at highly inconvenient and inaccessible hospital) for Thursday. Last Thursday. And postmarked Friday. Sigh. Dad rang up this morning and she has an 8.30am appointment next week so I will get up at 5, drive down, take her, then drive back. Dh is there today en route to a meeting and is charged with talking to dad about LPAs

Oh CMOT, nightmare. It's so hard with appointments and distance

Already had a call from the Carer, can't find the Galantamine - no that will be because she's not taking it. Mum asked to speak to me, away with the fairies. Explained Carer not coming tomorrow as we're looking at the flat tomorrow that you're moving into on Thursday, Hmm she said. We'll see.

Pretty sure she will refuse, awaiting call from SS Duty Manager having explained it once to someone who then said what did I want, more care? I said no as I don't think she is safe to be home any longer. GP can't sit down with us all as my Brother is still abroad though apparently back in a coupl of weeks.

My apologies that I'm still going on. I knew she'd hate it in one room and feel strongly that although she won't ever like the flat much is is the best option in the circumstances. There is no way I would bring her back from there if I ever manage to get her in. I was hoping she'd be so scared to stay alone after last week and hated the concept of a home so much that she'd want to go to the flat for security but it doesn't look like she will go willingly. Will see what happens when she speaks to Brother. Hopefully she'll be even more confused than earlier.

Getting there. Brother spoke to her and laid it on the line that if she carried on as is she is in severe danger of SS marching her out of there, that it's all very well her saying she'll go up a ladder only as far as she thinks is safe but it's what other people think now about her safety .

Duty Social Worker rang. Explained everything and the although I sound calm now I was at wits end last week. Said I want her to go to the flat she's being assessed for but concerned she'll refuse. SW agrees she sounds high risk and explained if won't go voluntarily she'll be assessed under either Mental Capacity Act or Mental Health Act, Mental Capacity one would be better. If deemed not to have capacity the a Deprivation of Liberty order or something that would be done to enable a Home to hold her.

Said obviously better for everyone if we can get her there willingly, even if just for short time till her Case Worker is back. She's also speaking to Memory Clinic to look at Meds again - that's good as I cried down phone to them last week . She's on duty till Wed lunchtime and asked me to call her after assessment tomorrow and she will call me after spoken to Memory Clinic. Brother and I think that her going into a home and hating it probably a good thing as she'll the flat as her only option and go. She said if she hates it she'll come and have night Carers, he told her that isn't an option. I'm leaving her to think for the rest of the day and will get her to assessment tomorrow. Pretty sure she will do that as wants another look at the flat.

Wynken, it is so difficult. Ma in floods because doesn't want carers nor a home, hates loss of memory.

It is so depressing.

And worrying.

Me again ...with no advice as usual ...but MrsF and Wyken you are both doing a fantastic job...and Wyken don't you ever believe you have messed up...

You made the best decission at the time ....hind sight is a wonderful thing !!

Hope tonight goes well for both of you .

CMOT ...no chance of delaying appointment ???

Good luck with the assessment. Lwt us know how it goes.

Thank you all, not sure where I'd be without this thread. Sun is shining today, I slept like a rock. Am hoping the weather stays sunny so she can see the place looking its best. It is set in 7 acres and I think at this time of year it's springing into life. Feel quite positive this morning and just hope she will be suitable for the flat.

I did speak to her yesterday to confirm when I was coming and she was still agreeing she would go plus talking curtains which I figure is a good sign. Said she wanted to stay at home but doesn't want to be in just one room in a Home so the flat is her best option. She hasn't realised she won't be left in peace as she sees it as much as she thinks but there will be less supervision at the moment than the other place. I don't think she will now refuse to go if she's accepted - but if she does I have SS onside, a date next week for a Capacity Assessment for her and have a paper trail of me crying to various professionals to prove we weren't coping. That I think is as good a situation to be in this morning as can be in the circumstances.

MrsF it's really difficult isn't it. Is there so done from the surgery she will listen to about the Carers coming in, who could persuade her she can stay home for now if she has them ? The Tracker Nurse at the surgery was someone Mum listened to. She was lovely but firm and Mum took things from her she wouldn't before plus I guess she'd seen people not wanting Carers many times before.

Thank you all, not sure where I'd be without this thread. Sun is shining today, I slept like a rock. Am hoping the weather stays sunny so she can see the place looking its best. It is set in 7 acres and I think at this time of year it's springing into life. Feel quite positive this morning and just hope she will be suitable for the flat.

I did speak to her yesterday to confirm when I was coming and she was still agreeing she would go plus talking curtains which I figure is a good sign. Said she wanted to stay at home but doesn't want to be in just one room in a Home so the flat is her best option. She hasn't realised she won't be left in peace as she sees it as much as she thinks but there will be less supervision at the moment than the other place. I don't think she will now refuse to go if she's accepted - but if she does I have SS onside, a date next week for a Capacity Assessment for her and have a paper trail of me crying to various professionals to prove we weren't coping. That I think is as good a situation to be in this morning as can be in the circumstances.

MrsF it's really difficult isn't it. Is there so done from the surgery she will listen to about the Carers coming in, who could persuade her she can stay home for now if she has them ? The Tracker Nurse at the surgery was someone Mum listened to. She was lovely but firm and Mum took things from her she wouldn't before plus I guess she'd seen people not wanting Carers many times before.

Heres hoping she takes to it Wynken.

Dad refusing to sort an LPA 'shes so much better'. That would be why she didn't know DH yesterday and can't name her grandson then wouldn't it. Gah.

Well that went pretty well. Another flat had come up a bit closer to the main house. Mum did well with her walking frame and they are happy to have her in the flat for as long as she's on her feet then it will be the main house. Although the flats are the same this one feels slightly nicer. She's quite taken with the apple tree outside her window. There were lots of squirrels running round. There's a little fridge, she'll take her microwave and kettle. There's room for her sofa, one of her bookcases with a built in one for the other books plus space for her favourite cabinet. Plus she can have Sky and a phone line.

They said she will need to commit to staying a month as a fair trial and she agreed. She's a bit wobbly but says she feels she'll be much happier there than she was in the other place. She is getting increasingly muddled but think that' combination of stress, the recent TIA and coming off Meds.

CMOT could someon from surgery speak to him and explain it's so something we should all have re the POA?

Brilliant news Wynken. Now practice the 'well, you promised you'd stay for a month' phrase and tell your brother he must say it too.

The carers centre lady (who I luffs) had talked to him about he POA, but he's well entrenched in denial again right now.

Wynken ...that is good news...sound lovely with the apple tree and all.

I know some of you are still having "bad moments/issues" but I have some "happy" news that I would like to share if I may ...

Dad and I tackled the catheter this morning for the first time and it went really well !...Neither of us had got our heads around how it was going to be done and I did not want to push/nag him but he was happy to try this morning....well 11.00 and I think we can work a routine out.

Then he met my mum ...had a nice pub lunch without me !! and collected his new sunglasses...that he did not "need or want"...but has to have as he has cateract in 1 eye then came and showed me before I did the school run !!!

He seemed to like them !!!

Hopefully not having all this old wee in his bladder will make him feel better !

Oh dear CMOT . How would he respond to you saying him, your Mum and you all doing one as it's something everyone needs etc ?

Thing is once she's in the flat she isn't getting out without her Mental Capacity being assessed and it will have to be done if by any chance she chucks strop and refuses to go in. My Brother has already told her she can't stay home. She's going where we want her to and are no ready to stand firm with paper trail in place to help assessment if she wants to go home.

Just to say well done Wynken! So impressed that you seemed to have found somewhere that your Mum likes & will suit her. Is she in there now - or do you have a moving in date?

Bizzey - great news on your Dad's catheter. Sounds like the plastic penis must have been useful after all

CMOT - sorry to hear about another one with denial issues. Life would be so much easier for all of us, without having to battle the other members of our family in denial!!!!!

Nothing much from me really. Small dramas, which show Mum's reduced capacity to cope but nothing overly burdensome. Dad still not sleeping well & has no interests, so Mum really struggling to fill his day.

Do any of you know if doing something like a jigsaw puzzle would be possible? I don't want to try it, if it will be too difficult for Dad. He can't write anymore and can only read a tiny bit and finds it very tiring. I tried to get him drawing, but he found that impossible too. Even watching the TV is too fast moving and tiring for him. If anyone has any thoughts on stuff he could do or Mum could do with him, that would be great.