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

Will defer on the as I'm running a half marathon on Sunday

I bet your blood pressure would have shot up when he said that! It must be doing your health no end of good to have this break though

Good on you CMOT, good luck for Sunday.

Am feeling better health wise , hardly any migraine, less gallbladder attacks, blood pressure reduced a bit though am starting higher dose Meds. I'm still not biting my nails and am planning to book in for my first ever manicure next month. As meeting approaches though I feel more stressed again.

Brother told DH earlier he will be back a week on Saturday depending on outcome of Tuesday's meeting.

Very generous of him

Depending on the result of the meeting?

So if it is decided that she moves back home he will return to look after her?

Wynken, so glad to hear things have settled a bit for your family now your Mum is settling in a bit in her flat / CH. Sorry to hear she still won't see you though.

Good luck on Sunday CMOT - I am in awe of anyone who can run a marathon. Glad to hear your Mum liked the day centre too.

Smiling - any news on your FIL?

Relative calm for my parents. Dad is not great, but he is well cared for. Mum finds that the carers not only offer her respite but also company. She is less controlling and rude with them & has relaxed a bit about having them in the house. I blitz the newest piles of paper every weekend and now that Mum is slightly less stressed, she is doing a bit more admin too.

I'm glad the Carers are working out PostBellum and that your Mum is benefitting too. It is a big adjustment I guess having someone in to do something you did. Bigger maybe for a spouse than a parent.

Needmoresleep , I'm unclear as to the details.he just said exactly that to DH regarding work planning. It's her 75th birthday in a couple of weeks which is another issue as if the professionals decide it is better for her to stay where she is she may well still not want to see me.

It's out of my hands though at the end of the day and up to the professionals involved in her care. My GP is also her GP and the one she saw the day she went in when she asked if that was doctor's orders and he said it was plus I'd ring him if she refused after he had gone . He said yesterday she needed to go then as clearly wasn't very well.

He also said he sees a lot of situations like ours where relatives who haven't seen people for years are involved and huge falling outs occur, he'd had one the previous night. Said he knew how much I had done for Mum and been there every step of the way for her. Obviously I am dreading the meeting and feel quite intimidated about having to sit opposite my Brother's solicitor. But there will be a lot of people I am familiar with from Mum's care and I'm sure I won't be the first person to burst into tears if I do. Today I'm getting on with making today a Happy Birthday for DS.

I saw my mother for the first time in about six weeks. She had completely forgotten how miserable she had been and seemed delighted to see me.

She is really happy and enjoying being within a community. Having support at the right level means that she does not need to worry about things that are beyond her capability, yet feels she is in control. As she has become more settled she has a better awareness of her memory problems, which makes it easier to explain some of the decision making.

I may have stumbled on part of the problem, and hence a solution. She does not like being dependent on me. However she seems content to believe that it is my husband who is organising her tax, finance and admin in the background. Presumably because he is a man, and these are the sort of things my dad used to do. So from now on DH will get the credit for my hard work. There does not seem to be a problem with me doing "female" type things like taking her to her hospital appointments.

Needmoreskeep that sounds really positive for your mum. Annoying that your DH gets the credit but needs must I guess!

My dad is doing ok at the moment. 6months on he's properly recovered from his radiotherapy. However he's got an interesting line in impressive falls - the latest backwards off the bottom step landing on his head in the lounge doorway- apparently he's ok but has a carpet burn in his scalp :(

Excellent she was pleased to see you Needmoresleep . It all sounds really positive which is great news. Sucks that your DH gets the credit but if the solution is that then I guess that's life with Dementia.

It's Friday 13th big style here today . DH fitted due to low blood sugar today and I had to get an ambulance. He's stable now but keeps vomiting and has forgotten big chunks of yesterday. He nearly freaked out whn I said DS had walked to scholl by himself as he had forgotten he now goes to Middle school. DD finally had to catch the bus to school on her own. DS broke a glass and my shoulder and neck hurt loads for the second day in a row. Do you think that is my 3 for the day?!

Poor DH has bitten his tongue badly and hurt his shoulder so is gong to be sore for a few days. This is stress at the idea Mum might come home, last time he was like this was well over 5 years ago when his Mum had cancer.

Spoke to CH, issues with getting Mum out of her clothes. She thinks she is going home on Tuesday and it's unclear if she is gong of the meeting. Scored 28 on last MMSE apparently which is a drop of one point since January so Galantamine seems to be holding her fairly stable. Not sure if they repeated the ACE-R which was where she was low scoring before.

Hi everyone I was told about this thread by someone on here, I hope it's ok to post :)
I am 21 and caring for my mum who has just been diagnosed with Alzheimer's although she has been struggling with memory loss for a few years now.
I was wondering if anyone has any practical tips on how I can make her life a bit easier? She is struggling lots with worrying about us too. Xx

Welcome to the Club no one want to belong to.

I am not sure I have any early and obvious tips other than to look after yourself as well as your mother so you can both maintain as much independence. Perhaps taking advantage of things offered by the Alzheimers Assn or local carers group.

It is an awful position for both you and your mum. And quite isolating. I at least have a husband and two teenagers to support me or at least to provide balance. And quite isolating as very few of your friends will understand.

(Since my mother became ill I discovered someone I know who is in their 20s has a mother with MS with Lewi body dementia and who confirmed it is tough to deal both with the physical and emotional. Even though in her case her dad has picked up most of the burden.)

Look at the Talking Point forum on the Alzheimers Assn website. Read Hugh Marriotts Selfish Pigs Guide to Caring. And come back here for advice or support or simply to offload.

Thank you, needmoresleep xxxxx

Hi Lilypad just sending supportive thoughts. As NMS do remember your own needs. Maybe there is a support group in your area, possibly for young carers. Your GP might be a good first point. if it feels it s getting too much, maybe you can refer yourself to social services ( sounds scary I know, but I long realised I had to forget old preconctions of what is OK and respectable when confronted with the need to deal wit h my Dad s dementia). Having said that my experience of SS has been they were virtually useless, but maybe that s because of my dad's circumstances and his lack of insight ( he thinks everything is OK so for example is not in to let in cleaners etc). If I d been around to let people in they might have provided help, but I don t live with DAd. I hope you get the help you need.

Hi Lilypad, very sorry to hear about your Mum. Things Mum found helpful are a clock with the day and date on as well as the time, a diary, whiteboard/notice board, an induction hob that beeps when the saucepan is taken off. The lady who had the flat before Mum had labels on the outside of drawers and cupboards.

My tip is to try and get help when you first feel you need it, don't wait until you get too run down. Also make sure you have things like power of attorney sorted sooner rather than later. It 's important you keep doing things you like doing and seeing friends and other things that are about you.

The meeting tomorrow is cancelled again as a few of the people needed can't now make it .

It's her 75th next week. I'd better speak to the CH and see what they suggest.

Wonder if any of you lovely people have any advice. My parents in law, both with dementia live at home with a carer. Mostly this works OK, but recently they've started arguing a lot over glasses (this sounds so trivial written down!). MiL is very confused and needs strong glasses (about +6.5) to see anything, so she wears hers pretty much all the time, she's not really able to take an eye test any more and is housebound. FiL, has cataracts which he doesn't want treated and needs reading glasses of about +3.5 according to sight test approx 3 months ago. However he claims these are not strong enough and keeps bullying MiL to letting him borrow hers, she usually agrees to prevent him getting angry, but clearly doesn't know what she's agreeing to because she wants them back straight away and gets very stressed without them. This week she's started refusing to take them off at night (probably worried about losing them). FiL shouted at the carer when she tried to stop him borrowing them yesterday and when I gave them back he had a row with me too.

So today, I thought I'd get another pair for him at her strength just to keep the peace. Im sure he doesn't need them that strong, but because of the cataracts finds it easier to see with the bigger magnification. However, I'm told I can't get them without a prescription, does anyone know any way I can or have any other ideas how to resolve the problem?

Welcome....

It probably wont help your problem, but were you aware of domiciliary opticians who come to your home. Either Google and see who is available in your local area, of you can phone local opticians and as if they do domiciliary visits. Even if they don't, they might be able to suggest someone who does. They bring round a selection of glasses and then come back to fit them. The cost did not seem to be any more than standard NHS.

Apart from that all I can suggest is that you get a second pair made up to your mother's prescription.

Unfortunately if your FiL's cataracts have got worse, I don't think stronger glasses will help much. Can you get him a magnifying glass and make a big thing of how special it is and it is just for him. I know this might sound patronising to him but it isn't really. Then also what needmoresleep says.

domicillary optician sounds like a good idea - thanks. We don't have a copy of MiL's prescription, and I don't even know how long ago she last had them done or where, so a retest would be a good idea if she's up for it. A magnifying glass won't help as he already has numerous ones and has even taped two together to make an extra strong one, but still wants MiL's glasses (sigh).

Agree if you can, get someone to visit them and test your MIL's eyes to get another pair of classes. Do you go to the allotment to escape from it all?!

Latest from Wynkenland saga. DH recovering from his fit and his tongue is healing so he can speak again and isn't in so much pain. He's been quite stressed though as on Friday my Brother said to him that something big with Mum is happening next week which will change everything, that he'd tell him next week. He asked how much stuff Mum has at St Ives and said he is flying home Thursday.

This sent poor DH into a state of stress and he then snapped at poor DD. Monday he's going to ask my Brother not to discuss Mum with him as he has his Dad to worry about and to ask me or CH.

CH advised Mum had an independent assessor come to assess her capacity. Assumably from what Brother has said she was found to have capacity. My GP has requested that I put myself and the children first now and think very carefully how I go forward from here. He said he knew I had been there every step of the way for Mum. I've asked for a counselling referral. If SS are happy that Mum has capacity then I assume she will be going home .

I'm going to request that as she has capacity she removes me from her Financial POA and sets up a Health and Welfare POA with my Brother as Attorney. Also that she amends her will to any money being left solely to my Brother and removing me as Executor. I do not wish to remain in the position of having accusations levelled at me that I only have my best interests at heart, I am financially motivated and trying to protect my inheritance.

Struggling to find any part time jobs to apply for and don't want to do full time as DS adjusting to new school and started having a panic attack last week. He is ok but needs a lot of emotionsal support right now. The events of this year has affected them both. I've enrolled on a course which I'm starting next week which will hopefully will help me find something.

Had some long discussions with my Dad and our relationship is stronger than it ever has been as I've realised a lot of what my Mum told me was just not how she said it was. I'm hoping counselling will help me unravel this. I've kicked my life ling nail biting habit weirdly over the last month or so. My friend commented that says it all. I think she has a point.

I'm going to finish now as this is much longer yet again than I intended. But I've been blown away by the kindness and support of friends. The saying at times like this you know who your friends are is so true.

My mum passed away yesterday, she had Alzheimer's and vascular dementia.

Finally an end to her suffering.

Sending love and strength to everyone going through the same journey.

So very sorry Numberlock. Thinking of you xxx

Numberlock, best wishes to you and your family. I like the Irish approach of seeing a wake as a form of celebration. You lost much of the real mother a long time ago and now is a chance to both mourn the person she was and celebrate her life.

WBN. Your journey over the past few months has been extra-ordinary. I think your friend is right and suspect the events of the last few months have helped you gain a perspective on your family relationships and on your parent's divorce. Counselling sounds like a good idea and should help you make sense of it all and to move on.

A lot of the stress will have come from the fact that though you have assessed the problem and found an acceptable solution, you have not had sufficient control to move from one to the other. Your brother clearly needs to control. It is unacceptable that he does so and could then expect you to run round and prop up an unsustainable solution. She may have capacity now after a couple of months of good consistent care and company, but may not when back on her own. And at some point, whether it is a month, three months or a year, certainly wont. What happens then. Unless he agrees (and he will be on the other side of the world, with no good feedback on what is going on, and presumably reluctant to lose face) you wont step in and I assume Social Services will feel the same.

I would be tempted to ask Social Services, the panel, your brother's lawyer etc, how they see things evolving going forward as she (inevitably) loses more capacity. There needs to be a process whereby decisions can be made in a straight forward and sensible way if she is unsafe, unhappy or being home on her own is giving her a significantly reduced quality of life.

I assume that with the earlier planned panel cancelled your brother is aiming for some form of emergency order to get her where she says she wants to be. I also assume that her motivation in insisting she goes home is that this way she gets to see the son she has not seen for five years. (My mother still says she wants to go home, as I don't think she can deal with the finality of giving up her independent life, but happily agrees it is a good idea to stay where she is "through the Winter".)

I feel like someone out of an episode of Jeremy Kyle! I have no idea what is happening but trust that the professionals involved in her care won't let any harm come to her. They are the ones who deal with Dementia day in, day out, I'm in at the deep end.

My Brother mentioned to DH about buying a house back in the UK where his business is based, he has toyed with the idea frequently over the years. Maybe he plans to do this ? No idea what's happening to be honest, can only surmise from the little anyone has told me. Maybe he will be down frequently to deal with the problems as they occur.

Mum said she didn't want to see me until she was home and then I 'have some hard questions to answer' implication I have behaved badly. My Brother thinks it is the events of this summer that makes her think this but wasn't present when the Tracker Nurse had to calm her down over the initial memory clinic appointment or when the Memory Nurse had to calm her down as the Council tax letter with severe mental impairment came through and she thought I had written and told them that.

I'm not engaging in any discussion regarding 'hard answers' until I have had counselling. I simply can not let the level of stress that was in our house earlier this year return. I would be hugely failing in my duty of care to my children as GP pointed out to let us get back to where we were. It's going to take sometime to repair the damage done as it is.

My Mum regaining capacity for now, if that is the case, is down to the care she has received at the CH. I obviously made the right choice at the time. My Brother told me to let him take over so I am. I assume he is going down the Live In Carer route as she felt unsafe on her own.

Assumably at some point someone will let me know what's happening. I will be guided by the professionals.SS legal department is involved as far as I can tell so they will keep her safe.

I am so sorry numberlock, but now she is at peace and free from pain. I just wish the same would happen for mu Mum. Take care.