Support for anyone with a parent with dementia - drop in for support, a rant, or a cry. All welcome.

[CMOTDibbler]

Welcome to the thread no one wants to be on, but we are all travelling with our loved ones along their journey with dementia.

Then you stop.

I finally got my mums flat clear last Easter, and tenants in. I literally packed the car full and drove the remaining stuff up to London meaning to sort things out at home. Boxes sat in the living room and bedroom for six months as I did not have the energy to touch them. It did not matter, they were not going anywhere and recovery was the priority. Done now and indeed I have now started attacking the various storage facilities my mum has. I found a Chinese army uniform...no idea where that came from.

On money my advice is to keep it as simple as possible. Part of my problem was that there were fixed term ISAs all over the place as well as National Insurance, Premium Bonds etc. Having sorted it out, using a big Excel spreadsheet, and a few days wandering around London getting the POA registered at various bank branches, I would keep it as simple as possible, focussing where possible on tax free accounts. So stuff as much as you can into an ISA (Easy Access are only paying about 1.5% but at least you don't have to declare them on a tax form.) Also put as much as you can into NS&I products. There will be a new release of a "granny bond" I think next January which looks as if it ought to be first port of call.

I have also set up a Hargreaves Lansdown account and anything over and above what is likely to be needed for future care (and I recognise I am lucky that there is more) is being stuck in there is basic risk averse trackers and bonds, again as much as possible in ISAs. The advantage of using a single investment platform is that they then provide a single annual tax statement.

That's exactly how I feel Wyrd. I'm just coming to the end of my temporary job but have found a small business to buy so have more solicitors to deal with right now. However I have discovered today possible issues with planning (potentially lack of ) which may have put an end to that and is proving to be a right PITA today. We've got friends for the weekend and I'm taking Mum out tomorrow. All I actually want to do is sleep. The compromise is a no cook weekend.

A Chinese army uniform is making me laugh Needmoresleep ! That beats a Russian Gas Mark with a price tag of £9.99. Think that might have been during the SARS scare, who knows.

The idea of another tax form depresses me but my Accountant has said he'll deal with that. I was thinking seems a shame to earn a tiny bit of tax, pay the Accountant to do tax form ( but given history I feel it very necessary) and shame I can't just give it all the the CH and be done with it.

That rather flippant train of thought has made me think though that maybe I should get a quote for a Care Annuity and just see how much it would be. I suspect it may well be more than she has but maybe it should just be looked at just so we actually know. I was so knackered I didn't take in about the Granny Bond when DH mentioned it, will have a read.

Maybe I can sit down with my Brother when he returns to the UK next Thursday (damn that pig buzzing round my head ) and talk it all through. He has however checked in online for a flight tomorrow part of the way back so guess stranger things have happened.

Thanks for the financial info Needmoresleep I will keep it simple. I have to work out how much I need to keep instant access, it's over £30k a year for the CH fees but there was talk of a cap on the amount you have to pay coming in around 2016 so there may be a bit of light at the end of the tunnel. I am going to split it up tho just in case!.
I still have boxes and stuff around, like you I can't face it at the mo but I will get round to it eventually,like my to do list.
I must admit the chinese army uniform made me giggle too!

Sounds like you're still up against it Wynken there's always something isn't there. What is a Care Annuity?

I too have boxes in the garage but they can stay there. The Manager of the CH suggested I look into an Annuity. You pay a lump sum which is determined by underwriting depending on age, health etc. It then pays out a set amount per month for the rest of that person's life. It is effectively gambling on how long someone lives which doesn't feel a particularly pleasant concept but guess it is the same principle with a pension annuity.

Do we know how the Cap works ? I'm guessing what is paid between now and 2016 won't count. And I read that it is for Care only and the true figure when the accommodation costs are worked out will be 150k. So with Mum's fees currently at 38k, if she pays for 2014 plus 2015 then a further 150k, she'll have run out of money before the cap kicks in. No she won't as shortfall about not the entire cost of fees but will take her pretty up to what she has left .

not sure how it works i haven't looked into it yet but i think you are right what we pay up to then won't count. i didn't know it was care only mum will be in the same position then.

I've just read another article and it says something different again. Guess it's a wait and see.

hi everyone, I have read some of this thread during the last few days but am on here tonight because I just need a rant / cry etc. My mum is in early stages of memory problems - we have memory clinic appointment on Weds and I have no idea what to say to her about it yet, which is making me feel incredibly stressed. I don't have any siblings or cousins or anyone really - DH is a bit hands-off and doesn't get it with this problem, although I have told him recently he needs to step up and support me more. Her neighbours are great and put up with her being quite rude to them but they are understandably not keen to do certain things that are medical or personal, so it all falls to me. I have two DCs, 3 & 7 and I know I am being a total cow to them sometimes because I am so hassled with mum.

I am in that difficult early stage when the help hasn't all arrived yet and my mum is angry, secretive, rude and I think having huge anxiety and depression (I know I would in her shoes). My mum is vulnerable - she has always been a odd mixture of reckless and controlling and it is a very bad combination with her recent memory troubles. You know that sinking feeling when your phone rings and you can see it's neighbours / care agency / SW, and you want to be you, just doing your work, being yourself and not interrupted. Or is just me? anyway my mum's care agency have written saying they are withdrawing in 2 weeks because it's not been possible to satisfy Mum - and they have a point, I feel very embarrassed by her behaviour to these (mainly) kind and longsuffering women. But I have got to find someone to work with her. I hate everything about dementia. I had a really lovely talk with the information and advice worker attached to the memory team this morning and I felt buoyed up. I hadn't opened the post yet today and it was the neighbour calling me tonight that alerted me to the letter from the care agency and I was back to feeling all my worst feelings. However, improving considerably just from writing this. It's not a coherent account but I do feel better.

Hello, i understand only too well how you feel. I am in a relatively quiet phase of the war, after 2 years plus of trench fighting over my Dad's dementia. He has AD, not much insight, lives with my brother who has mental illness. No other family to help, his siblings basically pick up the phone every once in a while to query/ criticise what I'm doing. Have been through the whole sorry process from the dark clouds of forgetfulness, confusion and aggression gathering, the scans and diagnosis, the medication (frankly I have no idea whether it works), then the restlessness and dangerous behaviour, a failed attempt at settling Dad into a care home (he went into meltdown and they told us they wouldn't be able to cope). Not to mention dealing with his neglected house and all his financial affairs. He is now at home with carers during the day.I visit once a week. So far (week 3) it is working and they provide good housekeeping services and crucially take him out daily (he cannot tolerate staying at home). Have not had any phone calls from police or any other agency for that matter, for 3 weeks! In my darkest moments, I never would have thought life could get this good!
So anyway, you have my sympathies, it is horrid horrid horrid and we can only do our best, and ring fence our lives after that or we too will get taken down by this awful disease. A few practical points:
Do you have power of attorney? (very important, it really does give you power and control)
Is there a team , maybe the memory team who can help you find suitable carers? We had to change team as the 1st were unprofessional. Dad's dementia team found the current carers agency.
Does your mother get attendance allowance? Sounds like she should. It is not means tested. I found it quite easy to obtain for Dad.
Good luck. Others here will also have good suggestions.

QuintessentialShadows strength to you. My ma was diagnosed a couple of years ago. I constantly imagine possible exit strategies that her life may take and am chilled by all. Your mum's doctor sounds ruthlessly efficient. But perhaps in a palliative ward it is one of the better ways to exit for one in her condition. Strength to you.

whenwillisleepagain -welcome to the thread. So sorry to hear about your mum. I have been where you are now so I feel for you I really do it's so draining especially the aggression. It does affect your whole life and patience with the kids I try not to let it but we are human.
Have you spoken with your mum's GP? is the memory team you mention the same as the Community Mental Health team my mum's GP got involved they used to visit her daily to make sure she took her meds and check she was eating etc. They are headed by a psychiatric nurse and were very helpful getting mum into a care home, along with the GP, and giving me advice. If she is in the early stages there are meds that can help I expect the memory clinic may mention that.
The hardest part tho is getting her to accept she needs help, it was for me, it was a dreadful time waiting for the next thing to happen. If you can get the professionals to support you it's a bit easier. What about social services, are they involved yet?
There is a limit to what you can do especially with kids to look after and try to take care of yourself too.

Wynken- how did it go with your mum on saturday?

Hi, I thought I should finally introduce myself having lurked on this thread for some time. My father in law, who’s 82, was diagnosed with Lewy Body Dementia a few months ago following lots of problems with memory loss, vivid hallucinations, poor appetite, weight loss and a general lack of cognitive functioning. He also has Parkinson’s Disease and up until a fortnight ago was sort of managing to live at home semi-independently with the help of a home carer who made his lunch, a cleaner and us.

Two weeks ago things came to a head when he collapsed at home after having a mild stroke and was also diagnosed with a UTI which was causing delirium The long and short is that I now cannot see any way he can continue to cope living independently. He is still mobile but extremely unsteady, he has developed urinary incontinence, he needs help washing and dressing, he cannot prepare any food, would now struggle to even make a cup of tea alone and cannot take his medication without assistance. He is frail and thin and spends long periods sleeping or staring into space and has regular falls.

His medication for LWB, Rivastigmine, has been making him very nauseous but seems to be resolving now he has been put onto patches rather than tablets. The Rivastigmine has definitely reduced his hallucinations but he is on a steady decline into dementia. So, as a result of recent events, we found him a very high quality care home for him to ‘convalesce’ in for two or three weeks after being discharged from hospital. The home in reality is lovely. He has his own suite with a living room, bedroom, kitchenette and en suite as well as round the clock care and the usual lounge areas and dining rooms etc. It sounds ideal doesn’t it? It is ideal actually.

Unfortunately though, he is really unhappy there. His dementia is not so bad that he doesn’t realise where he is and he hates the fact that he is surrounded by ‘old people’ (he’s actually older than quite a few there). He views it as being one foot in the grave and if I’m honest, I can totally understand why when you look around. All he wants is to go back to his home but there is no way he could manage there at present. It’s on two levels and he could never manage the stairs (no room to fit a stair lift and he wouldn’t be able to work it anyway). He needs far more help than the four home help visits a day we could arrange plus us visiting, and he couldn’t be left alone as he is at high risk of falling and of course incontinent. When he collapsed last time he wasn’t able to press his home care alarm and so stayed on the floor for 2 hours until we found him.

He’s such a lovely man but he seems depressed in the care home and we’re at a loss as to what to do. Do we let him go home (not that we could stop him ringing a taxi and going there himself if he so chose, apart from the fact he doesn’t know his address anymore). If we do it would be taking such a huge risk and I’m not sure we could live with ourselves if he collapsed again, and if he fell down the stairs it would likely kill or seriously injure him. If we force him to stay in care he may spend the rest of his life unhappy and resenting us. It’s a bloody nightmare.

We are getting Social Services to do another assessment of him shortly to see if they think he is fit to live independently, I can already guess the answer. Our trouble is he is still a grown man with his own views and he is not too far into the disease to not be able to express his wishes. If we could have him live with us I would as I love him dearly, but we work all day and have a young child and our home is also on two levels so the risks remain the same.

Can anyone offer any suggestions? The stress is palpable in our lives and we want him to be happy and well looked after but I can’t see any way that we can have both of those two things at once….

Sorry for the epic post!

I faced similar about a year ago when my 84 year old mother had a fall. The fall was a good way of getting her out of her flat, as she was really not capable of living independently, yet in convalescent care it became pretty clear that she was not ready for a CH.

We bought her a flat in "very sheltered" accommodation, which has worked out perfectly. Reception, cooked lunch 24 hour warden and more. Yet her own flat and a sense she has control. She gets some top up care to prompt on meds etc, and the idea is to extend this until a point where a dementia home is the only option.

The other option was a live-in carer, but my mother would not have accepted this.

Like many things it depends on money. If there is enough money, ask SS, the GP, and just about everyone else (priest, carers assn, whoever) about different local options. If you are reliant on SS contributions you will need to get their agreement, though there is no harm in having some suggestions to make.

There might well be a better solution out there. And even if there is not, you might feel better for leaving no stone unturned.

My mother became institutionalised very quickly in convalescent care, to the extent that she said she would be happy to stay there. It was then a struggle to get her to re-acquire skills and routines. So if you can move him, you need to do it as fast as you can.

Hello WhenwillIsleep. Sorry to hear things are tough. Things went quite pear shaped with my DC's when things were bad with my Mother. It is incredibly difficult and I did get to the stage where I was struggling to function properly. Could the advice worker suggest some alternative agencies for you to try? I used to feel quite embarrassed by my Mother's behaviour but rarely do now.

Wondrous, sorry to hear about your FIL. My Mother is kind of similar situation, a self contained flat in a CH. In theory she doesn't need this level of care and I would have loved her to be somewhere like Needmoresleep's Mum. However she will not take her Meds unless in a CH setting and gets in a state without them. Live in Care was tried (I knew it would fail but my Brother would not listen) and was a disaster.

What we're trying next is moving her to another CH which is part of a retirement village so many more people around (present place only has 22 residents), village shop, coffee house, swimming pool etc. Hopefully this will give her a much wider selection of people to mix with who aren't as far down the line. For her it will also be associated with going Home as she's living close to me where she moved about 9 years ago and never really settled. She does accept she isn't going back to her house as it's been sold, so that is progress.

She is very paranoid so having a flat has back fired somewhat as she thinks the staff use it when she isn't there and wants a room in the next place (very handy as all there is available !). The next place has a Dementia unit so she won't need to move again once she is there. We have hidden behind SS and say they say she has to be there.

Now, I don't want those of you who know the saga of my Brother to pass out with shock, but he is currently on European soil with his possessions in a shipping container back in Thailand and his Visa cancelled . He is adamant that he will be here to take her for assessment at the new Home when the call eventually comes...

Plus I took her out on Saturday for the first time , with DD for moral support as my friend told her she was going with me. It was wasn't easy but it wasn't terrible. She spread newspaper over her living room to make it look a mess so no one would go in, fretted about what was happening back there for 45 mins and spent so long in the disabled loo that I had to take a little girl who was waiting with her Dad, into the Ladies. However she did get some enjoyment of being out so that's great.

Bob, really glad to hear things are going ok

thank you everyone. I got mum to a local health centre for blood tests today. I have just told her over the phone that as a consequence the GP wants me to take her to another appointment on Weds. I am relying on the psych team - and yes, in answer to the question whether memory team is part of community MH team, I think the answer is yes - to help me find a care agency that understands mum's needs and to pick up co-ordinating her care - I also got a letter today telling me the rehab team who oversaw her arrangements on discharge from hospital, are closing her case, which is understandable, as we are now in different territory.

I have been trying to get Power of Attorney arranged for many years, last year and the two years before (preceding obvious signs of memory loss, although of course I now ask myself what I was missing) I made appointments incl. one for a home visit, to talk about POA, Mum cancelled two and asked the solicitor to leave with the home visit. I had sort of remembered and then forgot about Attendance Allowance, so thank you for the reminder. Because Mum's decline has been sudden (I think), ie driving to meet me for pub lunch one day, mysteriously found in bath, clothed, no water, 5 days later, and that was only Sept last year, the social worker said she needs to have required help for six months before I can apply, so we are just about there.

can see this thread is going to be a lifeline

Thanks Wynken. Before these new carers upped their hours to 8 am to 5pm, it was daily crises and sometimes I just opted to leave my mobile at home when i went to work, knowing full well something would happen, but just choosing not to respond that day. I was in a state of constant high alert, it was awful. I could virtually feel the adrenaline pumping around my system. Now there rarely is anything. He is reasonably content being taken out by the carers although they do say it is easier to settle him when they put the date of my next visit on his calendar and point to the day if he's getting restless. I know in all likelihood this is just a lull, something will happen, his disease will progress and this won't be enough anymore. But I'll cross that one when I get there. I'm taking 6 weeks unpaid leave (partly to recuperate, partly to deal with the endless POA stuff) and will try and introduce him to a day centre. It's all ways of finding stuff for him to do, that seems to be the key.
You seem to be making steady progress with your mum's living arrangements. My view for what it's worth is, if your brother comes, good, if he doesn't, you're managing OK. Are you still doing the counselling? I finished last month.
Wishing everyone on here strength and good luck.

Bob, its great to hear that things with your dad are going well.

Wynken, I'm not holding my breath, but that does sound suspiciously promising.

Wonderous, I would leave your dad where he is for at least two months before you think about moves. He's obviously not able to live on his own, and he needs to be safe

Hugs to everyone

Thanks CMOT! How are your parents?

Bob, I remember that state of high alert and adrenalin pumping very well, it's horrible. Trying a Day Centre is a good idea. I'm really pleased to hear you're on leave, I think it's really important to have a bit of time away from things after a crisis.

I have finished counselling too but find I mentally refer back to it sometimes when I'm dealing with things. Way I see it is she is safe where she is now, admits time goes fast, has a friend and likes some of the staff. The phone ringing no longer sends me into a state of anxiety and I feel we have our lives back.

CMOT, any news on your Dad and the pacemaker ?

Dads 7 day heart monitor went back yesterday, so should know more soon. This is a good example of joined up thinking btw - nurse told dad to bring it in, he explained this was difficult due to mum, nurse said 'oh, in that case, put it in this envelope, stick to the door, and transport will pick it up' perfect!

Mum has increased her agitation, and is very toddler like, following dad everywhere and asking what he's doing, whats this.. He is not liking this!

A nice thing though, I dropped into them last week when I had a work appointment near them and took them some eggs from ds's hens. Mum was absolutely enchanted with the dark brown shells, and sat there looking at them and stroking them

Bob, I forgot to say that mum has an Age UK befriender who comes once a fortnight for an hour to take mum out, and towards the end of the 6 months will start taking her to day centre and stay with her to try and get her to accept it. Might be worth seeing if they do this scheme in your area?

Thanks for the info CMOT. I will look at all the options, it may be that carers will need to prepare Dad in the morning/ take him. I'll make the initial contact anyway and I hope it is a place he'll enjoy. If htere's a role ofr a befirender I'll certainly bear it in mind. Actually, it is an AGE UK day centre.
I feel for you, it must be so hard to witness your Mum's deterioration, and your Dad's struggles. There are no easy solutions. Good that your mum still takes pleasure in simple things. Tellingly, Dad's carers have noticed he's not into museums now (used to love them) but likes seeing animals so they take him to a petting zoo. It could be heartbreaking, but I'm just glad they are finding things that keep him happy.

Hi everyone I havent posted for awhile, mostly because things have been chaotic since fil went into the ch.

He hated it at first and we had to visit daily just to keep him calm, it was exhausting but hes been there 7mths now and is settled, he even calls it home and when we visit tries to get rid of us after 30mins so he can get back to his friends.

Dp and mil now have poa and there feels like theres light at the end of the tunnel, when I look back to this time last year the difference is unbelievable, things were horrific for everyone, I just wish people had listened and stepped in before it got to the stage where he tried to stab mil (not sure if any of you actually remember our story).

Im now 12wks pregnant so have decided to step back and only visit once a week, dp struggled to come to terms with everything so we somehow got into a situation where I dealt with everything but hes gradually got used to dealing with drs and carers so I feel nows the time to fade into the background for awhile.

The dementia seems to have slowed down at the moment and fil is having lots of really lucid days which is heartbreaking because he briefly remembers theres something wrong but just cant understand what.

Sil still hasnt visited him and seems to be pretending he doesnt exist in fact not one of his adult grandchildren have visited him either which makes me so angry!

Hello, may I join you? My lovely, really lovely MIL has had dementia for 7 years and has been in a specialist Home for the last five years. She is the oldest person there, 89, 90 this year, and is their longest resident. She is not well .

Six months ago we were told that she was was very ill and would not 'last long' however she rallied and six months later, having survived that crises, she is now, once again very ill. I accept that she is elderly and I am very grateful for the excellent care she has received at this home, so what will be, will be. We fought hard and long to get her accessed and had to cope with a totally unsympathetic Doctor.

We would make appointments for him to visit her at home and he would ring her 30 minutes before the visit to question her ( mmm....) and she would say she was fine and so he would cancel the appointment. This at a time when she was putting milk in the kettle, eating raw sausages and wouldn't wash for weeks!

Anyway, I digress, we have had total peace of mind since she went into the home, and although she doesn't know who any of us are, at least we know we have done the best thing for her, she is safe and loved, she has excellent carers, we are very lucky.

My problem isn't her, it is my DSIL, her daughter, my DH's sister. In fact she isn't a problem, she just doesn't understand the situation. She herself is 70, but a very young 70 but she seems to ignore what is actually happening. So as not to drip feed, I should explain that we are overseas, as is the other brother, and my DSIL is the one that lives locally to my MIL in the home.

So two weeks ago she texted me to ring her, which I did and she told me that 'the end is nigh etc., and that they were leaving DMIL at the home (good) and DNR was on the cards, so we should get ready to come home if the inevitable happened. So daily texting and phone calls, things always the same, but DMIL has slightly improved.

DSIL has now gone away on holiday this week, prebooked months ago and she certainly needs the break! But I spoke to her just before she went and she tells me that when she returns she is going to 'insist on X-rays, scans, tests to find out just what is wrong with her DM.'

I have always found her very unaccepting of the dementia diagnosis, she always tries to argue/reason with her Mum, corrects her, argues with her, and sometimes gets very upset with/by her, declaring that her DM is 'just being horrible' to her. Unfortunately they have never had a loving relationship, which is a shame as she is the one now left to do the majority of the visiting.

I think what I need advice on is how I approach her to say that no, your DM cannot be put through medical tests! What difference would it make!

Surely as long as she is comfortable and pain free, we should leave things as they are? My DSIL says she is fed up of the uncertainty, wants to be able to make plans without worrying etc., that makes her seem selfish but I do understand.

But this isn't my DM, my DM died young (62) suddenly, nearly 30 years ago and my DH just thinks his DM will live forever. Do you think the Home would say that my DMIL cannot go through with all these tests, can my DSIL insist on them as next of kin?

Sorry for this long posting, this is really worrying me but as the DIL I'm not sure it is my place to object even though I have known my DMIL for 38 years.

Welcome MaybeIwill, and welcome back Smiling.

MaybeIwill, I'm sorry that you are going through this. Trouble is, only way you can deal with the subject of end of life care is to sit down with your dh and have a very honest talk about how his mum is going to die in the next months, and what does he want her end to be like. Then he would need to go see his sister in person and talk with her about it.
It really is a crap conversation to have, and not one anyone wants, but it has to be done so that you all agree.

Smiling, congratulations on the pregnancy! And brilliant that there seems to be light at the end of the tunnel