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Discussion in 'Recently diagnosed and early stages of dementia' started by Max68, Aug 21, 2018.
I've just checked it's called BT call protect and yes it blocks withheld numbers for free
I wouldn't have thought her paying for bits and pieces like petrol would be an issue, but good idea to check. It might be easier to keep everything in one place by doing online transfer payments between her account and yours - that's what I do. That allows me to add a note on the transfer of what the payment was for, so I don't have to keep hundreds of pieces of paper.
I found my mother put quite a lot of financial correspondence 'in a safe place' i.e. hid it in unlikely places. The worst thing we found was several letters from HMRC about a late tax return, with a fine of around £1500 being imposed. Fortunately HMRC turned out to be sympathetic, and cancelled the fine when told the circumstances.
Hi all again, apologies if it has been a while, I couldn't find my thread!!
Well just an update.
Got the bank account sorted. Apparently whilst fighting for a payment mum had been conned out of over the phone with her old bank sometime ago it was then added as "fraud" on her account so when the new bank put an automatic check through the word "fraud" came up hence only allowing her a basic account. As "upstairs" fail to talk to "downstairs" it was only after 3 months when I could ask for a manual account request that this was found and rectified and mum received her cheque book. If only the banks communicated with each other this could have been sorted in 5 minutes! Fortunately I have got most things transferred to DD's anyway so she now doesn't have to rely on it but at least she has it!
Mum had her memory test results back. I must say the empathy shown by the Memory Assessment Nurse was shocking to the extent of belittling. I was quite shocked, are these people usually so hard nosed and stern?!
Addenbrookes Cognitive Test scores were totalled at 85/100. Att/Orientation 18/18, Memory 22/26, Fluency 8/14, Language 24/26, Visuospatial 13/16. Extracted Mini Mental State Examination 28/30. They said though they were high scores they considered other info that highlighted that mum was having difficulty with short term memory and thought processing and wanted her to have an MRI scan. They said also that anything under 87/100 they like to do further tests. Unfortunately that scared mum and she didn't want to have it done, a degree of denial certainly and she wasn't comfortable having it so what were we to do? Force her? After various bits of advice we decided to honour her wishes although I received a rather aggressive phone call from the Memory Assessor almost demanding to know why mum wasn't going to go through with it which was far from helpful but she did say mum could have it done at a later date. This was done mid October and things were pretty stable for the last couple of months although I would still help mum out with a lot of things she used to do on her own, like driving her about, sorting out paperwork and bills etc. We also put her on the Wellbeing Alarm System which is one of those button alarms you have around your neck and had looked at possible downsizing or retirement villages as an option and had been to see a few,.
I was quite surprised at the high level of results though as I was not happy with mum's memory at all.. 8 months ago she was doing Suduko and Crosswords in the papers. 3 months ago she was completing them by ringing the paper up on their "Clue Helpline." Now however she isn't even attempting them and saying someone new must be creating them so clearly sadly a form of denial.
Fast forward to Monday 17th December and mum rang me to say she didn't feel great and was a bit dizzy. So I took her to the GP's and found that her blood pressure was very high and they wanted to do a 24 hour monitoring but the wait for the machine was three weeks. It's a confusing one as sometimes her BP is spot on but fluctuates variably to quite high levels. She could of course be forgetting to take her meds or the meds are lowering it when it is at normal levels but I'm no Doctor. She was a lot better in the afternoon though and insisted she was fine.
Unfortunately though on Tuesday 18th December at around 9pm mum rang me to say she was lying at the bottom of the stairs after a fall. I raced around and found her lying there which was awful. I got neighbour to help me asses her and then pick her up off the floor. After finding out that it was going to be four hours for an ambulance I took mum to the Hospital where she had X-Rays and a CT scan. Unfortunately/Fortunately she suffered only severe bruising to her back and the head scan was clear despite banging her head. I say "unfortunately" because that meant they would not keep her in to keep an eye on her as bruising cases are sent home. I personally thought she should have been kept in, after all she isn't 25.
Ironically her BP was perfect at the hospital and the Doctor seemed unconcerned about her earlier high readings seeming to downplay Blood Pressure readings fluctuating all day. I then asked him privately if the CT scan would show up any dementia evidence but he said no it didn't but it did show a fairly high degree of small vessel disease in the brain of which he said was prevalent in most elderly people anyway.
Not sure why she fell but I suspect the empty bottle of Pino Grigio on top of very little to eat didn't help!!
Got her home and set up a bed for her on the lounge couch which fortunately is very comfortable by all accounts and the next day brought a bed downstairs and a load of clothes etc so she doesn't need to go upstairs and we bit the bullet and persuaded mum to purchase a Stair Lift from a company backed by Age UK. Not cheap but a life saver once it will be installed.
However the last week since the fall she has been worse than ever. Terrible memory lapses sometimes within seconds of which it gets very frustrating to have to repeat yourself several times, confusion on how she is feeling, one minute she says she is better then a few minutes later declares the pain is the worst it has been and of has suffered course severe pain in her back all week. It's been a nightmare. I've been round there an awful lot and am even giving her her medication because she either can't be bothered or forgets to take it. That is worrying because has she forgotten to take it or am I doubling up on what she has already taken because she has forgotten she has already taken it? She is eating very little although insists she isn't hungry because she isn't doing anything and was in the same clothes for a week despite my encouragement to freshen up but there again mum always looks well kept despite this, I don't know how she does it, I look a mess every morning!!
Christmas Day I managed to take her to my sisters and she had changed some clothes, put a bit of lippy on and did enjoy it although didn't eat much. Still in pain but better than she was and was moving better and we have an appointment at the GP on Thursday.
Now however I am in a quandary. Why has she suddenly deteriorated so badly memory and thought process wise in a week? It wasn't great before the fall but I would say it's 50% worse since the fall. Could it be the bang to the head? Or is something else making her deteriorate in this way?
I don't know if the Stair Lift is a good idea now because how long is she safe to stay at home? Same as changing the bathrooms, is it worth it if mum will need care soon? Should I move back there myself or will it be too much for me to cope? Without sounding awful I only seem to survive mentally by coming home in the evening and trying to get it out of my head for a bit. Should a care home be a necessity or will a form of home care/help be enough for now? Do I push her to have another set of memory tests and have the MRI? Would a diagnosis make any difference? Are there any meds that help or would she just forget to take them? Is there someone I can talk to about all this as I really don't know what to do for the best?
I've taken as long out of work as I can and need to find work in the new year but any new employer isn't going to be happy I have a mother that I may need to be on call for and my sister is great but she doesn't drive and her husband works a lot so it's down to me and has been for the last year or so but I am inundated with advice leaflets from various groups and as I say just don't know what to do next.
So sorry for the long drawn out mish mash of words, I guess I just needed to get this out of my system.
Can your mother self-fund her care? If so, I would go ahead and arrange it. I was in a similar position, I wasn't sure how much/what type of care my mother needed so I arranged 4 hours of care a day - the carers did practical things but also to kept her company. I wasn't sure how long that level of care would be enough, so I played it by ear. Within 18 months she could not be left on her own and needed 24 hour supervision, so she has moved to a care home.
So if I was in your position I'd arrange care in the home and see how it goes. They will help her with her meds, take her shopping, take her to doctor's appointments (and anywhere else she needs/wants to go) do her cleaning and laundry and prepare meals - whatever she needs. I found my mother's care agency by googling 'dementia care at home' and the location. The care agency manager will assess her and can help advise what she needs.
Re adapting the bathrooms, I'd hold back on that for now as it will be a big expense and may only help for a few months. I'd ask the care agency manager what she thinks about getting a stairlift.
Re the memory tests, if you are taking her to the GP, be guided by what s/he advises.
If however you need local authority funding, you will need Social Services to assess your mother and decide on her level of care.
Max, I'm sorry to hear about your mum. This must be so distressing and worrying for you. I have some thoughts but am not where I can reply fully right now. Briefly, I wonder if your mum now needs supervision for medications and I also wonder if she might have orthostatic (also called postural) hypotension, or something else going on that is causing the confusion. If you can bear with me, please, I will write more later.
Thank you both. Yes mum is in a fortunate financial position so is able to self fund. Not sure if it fortunate or unfortunate really but that's another story!!
I will talk to her Financial Advisor in the new year and assess how we go about it as she has pensions and other investments so not sure even in the event of moving into some sort of a home she would need to sell her house or if there are other ways like rental of the house or use of ISA income to help fund. Not sure how all this effects her medical insurance either. We are in Sussex so it's obviously expensive down here and not sure if there is much difference to Home Care or Care Homes as far as finances are concerned. It's awful because she gets very upset about it because she invested heavily after dad died to make sure that we would be all ok when she went because I have been ill for many years so she has helped me out at times when I have been unable to work because the government don't!! I suffer from damaged balance organs in the ears thus when it flares up giving me 24/7 vertigo so when I have attacks I can't work so whilst I hate thinking about it this has got me thinking about how I will survive in the future when my illness flares up as well.
My sister has a friend who is a carer so we might well ask if she can help officially and see how that goes. Re the stair lift I guess you like anything else have 14 days to change your mind but any move is not going to happen overnight so it might be a short term expense but potentially a life saving one considering what damage a fall from three steps caused!! If we don't put it in then she will be stuck downstairs or she will be tempted to walk upstairs and I don't really want to find mum lying at the bottom again. So even if she is at home for say another 6 months with home care the stair lift at least will give her some independence although as much as it's easy to operate it will she be able to?!
A big problem is that some of her meds are "once twice a day" so someone visiting once a day say isn't really going to be able to help with that.
The other issue is that obviously I only want her to move once. It's pointless going into assisted living if in a years time she needs care. I did consider maybe selling her property and renting out mine and getting a property together but which has two sections so I get some space, if that doesn't sound too awful, but if she then needed to go into care and the house needed to be sold any new owner isn't going to want me living next door!!
If meds need to be given twice a day, have a carer in twice a day - you're paying, you can choose the hours. We're in Sussex and my mother pays £780 a week for her care home. When she was living in London with care at home, it was £22 an hour weekdays, £24 an hour at weekends (more for bank holidays).
I agree a stairlift is probably worth the cost, but I would take advice as they are not necessarily safe for people with dementia to use without supervision. The people to consult about safety in the home are OT (Occupational Therapy). My mother's care agency called in OT to assess her flat, but I think you could also get an OT referral from the GP. They are very stretched and may take weeks to carry out a visit.
I know some people resent their relatives having to self fund, but I am very glad my mother is able to. Without it I would have had a lengthy struggle getting her help from social services, and I suspect she would still be in a flat with inadequate care, rather than safe and happy in a care home. Self funding gives you the choice of what care you have, and when.
Thanks Sirena you are absolutely right I am glad that mum has the funds to do that as otherwise as you say you have a battle with social services and don't have much of a say in things.
I'll give the Stairlifts T and C's a read through again tomorrow. We kind of leapt into it without any real advice last week probably in panic and concern after the fall. It's a very good one with a retreating slider at the bottom so it doesn't stick out and the seat rotates at the top so you get off it onto the landing not the stairs sideways on which was my concern but I'll recheck the T and C's and call OT.
As I say mum hasn't had a diagnosis but something is definitely happening and it's the deterioration in just a week that's concerning. When I went round before regularly she was always clothed differently and plates, glasses etc were always on the sink top or in the dishwasher so she was looking after herself in the house,. Even this last week I have noticed cutlery and a plate on the side so she has had something even if at times she doesn't think she has. It's always a bit of a relief to walk in and see her sitting watching TV with a bag of crisps and half a glass of wine!!! And she has an electric oven and hob so at least it isn't gas. I've left my gas hob on by accident with a pan of fat on it and it wasn't pretty!
Re things going on she seemed to be ok with her diary and would walk down to get her hair done every Thursday and was always waiting to be picked up by me or someone else if she was going out so that was a plus. I have bought her a new diary with one page per day and might write in each day to take her pills. May be worth getting the message put on an ink stamps so I don't have to write it down 365 times! I have noticed that her writing is getting worse as well though and sometimes she can't read her own writing in her diary so how long she will be good with that is up in the air.
My biggest fear at times is if I am doing too much for her and taking away some of that independence because I suspect the less she does things the quicker she will forget how to do it.
Can I ask if you need a definite diagnosis for certain things like any possible help or advice? May I also ask is the care home your mother is in with nursing care? I read somewhere that dementia patients may not require care with nursing but I find that hard to believe at some stage of the illness? Also how on earth do you approach the possibility discussion of dementia with mum? I haven't mentioned the word to her once. She knows her brain isn't working properly but puts it down to other things and because her sister died after 10 years in a home with long term Alzheimer's and mum saw her how she was god knows how she would feel knowing what's coming, if she doesn't already know of course, it's bad enough for me to think about it?
I see from your first post that your Mum was also feeling dizzy in August. My Mum suffered with dizziness/fainting/falls and was found to have a heart problem. However the symptoms fluctuated so weren't picked up during 24hr heart monitoring. Hopefully your GP will be able to find if there are any medical reasons for your Mum falling and her increased confusion (which can be caused by heart problems). An infection can also cause a sudden increase in confusion so hopefully this will be checked. Is the pain being treated, and did the hospital carry out an x-ray? From experience they tend to want to discharge people asap and don't always carry out thorough checks so it would be worth the GP investigating the cause of the pain too as this can also result in increased confusion.
With regards the stair lift, the OT stated to me that they would not recommend this for anyone with dementia so we moved Mum downstairs so that she did not need to use the stairs. Worth checking with the OT first before spending thousands of pounds on a stair lift that your Mum may not be able to use.
I agree with Louise, don't rely on the stairlift company for info about whether the stairlift is suitable, they just want a sale. I am sure it looks safe to you, but people with dementia struggle to learn new things. A year ago when she was still living at home, my mother couldn't even remember to leave a tracking monitor on her belt, she removed it as soon as the carer left, because to her it was a random foreign object. If she saw a stairlift I think she would have just walked past it as she'd have had no idea what it was for.
Re how you approach the subject of dementia with your mum, there is no need to do that. Call it memory problems, or whatever works best for her. I would think though you would need a diagnosis for her to be accepted into a dementia care home. The GP can give a mini memory test and then refer to a memory clinic. But you're jumping ahead a bit, at the moment it sounds as if she could cope with carers coming into her home, and you don't need a diagnosis for that, although it would be helpful to start the process towards getting one.
My mother is not in a nursing home, she is in a dementia care home. It is true that some people will need a 'dementia nursing care home' to deal with both dementia and medical needs, but by no means all. Nursing care is care which only a medical professional can carry out, but many dementia patients only require 'personal care' i.e. help with dressing, washing, eating, mobility, continence. My mother's care home deals with all this, including residents who are in wheelchairs, are bedbound, and/or need hoisting to move them, and they aim to care for them until end of life. Any care home (or care agency) you approach will want to meet your mother and assess her themselves to ensure they can meet her needs.
I know it is a stressful difficult time and we all learn as we go along, but you will find a way through to get her the care she needs.
My mum was in a dementia care home which sounds very much like the one that Sirena described. She lived there for 3 years and finally passed away in her care home looked after by carers who had become very fond of her and in familiar surroundings. She never required nursing care, except for the pain relief during her final stage and that was administered by district nurses.
It sounds like she could just do with a bit of a hand at the moment, though. Perhaps get someone in to make sure she is taking her pills properly, or employ a cleaner to help with housework and keep an eye on her.
Thanks guys you are a real help and I'm so sorry with regard to all your own struggles and losses.
Sirena we did have the memory tests done as per my post above. The quote was :
"Addenbrookes Cognitive Test scores were totalled at 85/100. Att/Orientation 18/18, Memory 22/26, Fluency 8/14, Language 24/26, Visuospatial 13/16. Extracted Mini Mental State Examination 28/30. They said though they were high scores they considered other info that highlighted that mum was having difficulty with short term memory and thought processing and wanted her to have an MRI scan. They said also that anything under 87/100 they like to do further tests. Unfortunately that scared mum and she didn't want to have it done, a degree of denial certainly and she wasn't comfortable having it so what were we to do? Force her? After various bits of advice we decided to honour her wishes although I received a rather aggressive phone call from the Memory Assessor almost demanding to know why mum wasn't going to go through with it which was far from helpful but she did say mum could have it done at a later date."
Tried to call OT today but no reply so they may be be off for Christmas. It seems the same number I was given for help to complete the Attendance Allowance Form which I will take them up on. I can complete the form but having gone through similar forms with my illness I will always get help and advice now as there seems to be a certain way of filling these things in.
Spoke to my Ex this morning. She is a Radiographer but retires in January and I know she is looking for part time bits and she offered to help mum out as a part time thing so that's a good avenue to look at because mum knows her and my ex has some medical background. My Ex says it as she sees it as well so will be able to advise on if she thinks mum can cope in her home or needs to go into care.
Mum also seems really keen on the Stairlift and hasn't queried it at all and hasn't seemed to have forgotten about it so will still get advice anyway. I also spoke to an associate whose mum has more serious dementia and she said they got their mum a stairlift early doors and because she had it early stages she got used to it and it's one of the things she does naturally even now so that's a positive story anyway.
My next hurdle is Power of Attorney. We have it set up but my Ex thinks I should look into applying it but I still think mum has capability to a fair extent. I check all post and bank statements anyway and all bills etc are D/D so I am doing 99% of the financial stuff so it's a difficult one as mum said a couple of months ago she didn't want me in control of her account. It was nothing nasty just that it's one of the last bits of independence she has and I can see her point. I'm going to call her expensive gardener anyway and ask if for the time being he can come through me and at least that way at some stage I might be able to approach him about this two grand loan he had off mum. I know she likes him but I won't have her being taken advantage of. Too many of these people pretend to be "friends" but they are businesses and I suspect wouldn't give a monkeys if they weren't making money.
Hi @Max68 You need to get POA while your mum still has capacity. Once she loses capacity it is difficult. I have POA for dad although I have not used it yet. It is just sitting in the drawer ready in case I do need it in the future.
I hope I don't have to use it but it is there if I do. Get the POA done as soon as possible and registered at the same time then put it away in a safe place ready for when you do need to use it.
I have registered the LPA on behalf of my husband at his bank to help him with his account because he simply cannot do it anymore, and our daughter is registered to the account too. It seems to be ok to register it according to the manager who dealt with it. He does still have capacity to make decisions and did so at the time and sign his name, so both can be done without prejudice I think. I agree that the LPA needs to be registered while your Mum can still sign it. As long as she has capacity when she actually signs it that is sufficient. Fortunately my husband was agreeable to all the actions.
Yes my dad was happy to give me POA but I have not used it because everything goes into his bank and everything is paid by direct debit so it sort of maintains itself really. I take dad to the cash point when he needs cash and he keeps that in his wallet. I hope it continues to be so simple.
I don’t have to do very much but if anything arises the bank knows to call me. He has had trouble with his pin and now he has contactless that helps.
Dad never forgets a number, National insurance no, pin no's, telephone numbers of his friends in Australia, registration of every car he has ever owned, he can recite them all. I frequently forget my pin no.
Thank you all for so much great help, you are good people.
I spoke with my cousin for advice on the LPA's and she confirmed with me that they are all set up and registered so that's fine.
Saw the GP with mum on Thursday and mum is a bit better pain wise and a little sharper and also finding it easier to get around. The GP thinks the painkiller codeine tablets possibly don't help with a little confusion so she has now come off those. What shocked me is that the GP had the results of the scans and said she wasn't surprised mum was in pain because she broke two ribs! They didn't tell me that at the hospital. They may have told mum but considering everything I would be very surprised if they told her but not me! Credit to her because I have broken a couple of ribs and it's agony at times and makes breathing and getting comfortable very difficult so she has done very well indeed to cope. I am quite shocked they didn't mention it.
Spent Friday arranging an Occupational Therapy visit so she is now on the waiting list. Have also contacted a company called Appetito that does Meals on Wheels and have set up a Tesco Delivery Online account that I can just do for her and also have around 1000 Age UK Leaflets and websites to trawl through!! I did get her some pill counter boxes but even I struggled to open the bloody things, child proof is elderly proof as well unfortunately! Have however been told that the GP can arrange blister packs that have all her pills for days, mornings and evenings in them. Have also arranged another appointment with her old GP which is great because she knew mum really well but the GP herself has been ill for a year but is back soon so that's great because it's far better if she sees a regular doctor who can keep a proper eye on her,. I've also swapped her walk about phones back to circa 1980 models as the walkabouts have too many buttons. I think at times when finishing a call she forgets to stop the call so the phone is still active and therefore all three won't work when one is hanging. The amount of time I call and it's engaged is ridiculous because she hasn't turned one phone off. If ones battery dies the whole lot go as well so with the old style you have to pick up and place back the receiver so it should be easier. Wish I could find an easy TV remote for her, one that deals with the TV and Sky together rather than having one for each. My ex is also going to pop and have a chat with mum about how often my ex will visit to help etc.
I'm wondering if I do too much though as obviously mum has coped with certain routines and when you try and make something easier I guess it can be confusing for her. I might be on a collision course with my sister as well because even though she has a family IMO she doesn't do enough. She hasn't rung mum since she saw her on Christmas Day and it's really annoying me as I can't do it all. I am going to tell her we need to sort a phone and visiting rota in the new year and will see what she says. If she gives excuses I will just tell her that she can't be part of decisions if she isn't going to make any effort to help. I suspect this can be an issue with a lot of families but I visit or call mum every day and it wouldn't take much effort for me to deal with mum 4 days and my sister 3, I wouldn't have an issue with that.
Mum still asks if it would be easier if I move back home. However even though it's a decent house there isn't much space to have your total independence. What might work is if we put a small extension in the garden like a conservatory/study where I can have my own space and then use one of the bedrooms. I could then rent mine out which would give me more income. It's a difficult one because I am sure many of you may feel the same that as harsh as it may sound at times I just need to shut off from it even if it is just in the evenings or it would drive me mad.
Another thing I have decided to get mum checked out for is her hearing. No idea why this didn't occur to me because I have been deaf and worn a hearing aid for 40 odd years. Noticed recently that when I go over I can't talk to her without turning her tv down first and yesterday it was far too loud. No wonder she thinks the phones don't work I'd be surprised if she heard them!! Might be part of the forgetfulness as well especially me repeating myself, maybe she hasn't heard, people have been repeating themselves to me for years. Not saying her memory isn't dwindling but if she is going deaf it won't help matters.
Hi all, Happy New Year, if there is such a thing!!!!
Well we have received a letter asking mum to go and see a Consultant Psychiatrist in February. Mum finally accepted to have a scan but it looks like that won't be needed as they had permission to look at the CT scan taken when mum fell down the stairs and have just forwarded an appointment to by all accounts discuss the scan. Obviously we all know something is up but the fact that there is an appointment will probably mean a diagnosis will be made. Frustratingly they aren't allowed to let me to know any results prior to the appointment. I can understand that but at the same time it's a shame we can't know early because I will find out at the same time as mum and if I knew earlier I could prepare for it and prepare to support mum with having prior knowledge allowing a bit of time to fully take it in ourselves, if that makes sense?! I'm sure everyone else has the same dilemma.
One thing I did want to ask is how do carers/families deal with the situation when those affected struggle with things? For instance when mum leaves her phone slightly off the hook and no one can get through she will blame the phones, if she can't turn things on or off properly she will blame the item, that sort of thing. Today she had some hair spray and wanted to take it back because "it didn't work" and had tried to stick a hole in the top to make it work. What she was in fact trying to put a hole in was the lid which lifted off easily. Absolutely heart-breaking. So just wondering when a person struggles with something and blames that something rather than accepting "they~" are in fact struggling with it what do you say? Do you try and explain that it is them that is having the difficulty or do you just agree with them that the telly doesn't work properly or the phone is on the blink? On one hand I want her to realise her error to try and help her not make the same mistake again (hope rather than belief) but on the other hand I don't want to upset her by making her aware it's her that is struggling rather than things have stopped working. A really difficult one.
BTW those that suggested a stair lift may not be a great idea were probably right. As easy as it is she doesn't seem to know how to use it despite me creating a seemingly easy step by step guide. An expensive white elephant it seems albeit done with the best of intentions!!!