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

I'm going to leave dad to think on it till after mums CT scan and memory clinic appointments. He discovered this week that he hadn't been put on a waiting list for his prostate operation, or indeed to go to the urology clinic .

Postbellum - you could give your dad a go with a simple jigsaw, but mum can't do them anymore and gets cross with them. She very much enjoys watching DVDs of gentle programmes like Coast or Fred Dibnah that she's seen lots (lots and lots and lots in the case of Coast) and that don't require her to follow a plot. She likes looking at photo books that I've made for her too.

The Memory Clinic were very good at explaining to Mum she needed a POA. Wonder if they could gently push him for you if you prime them about his reluctance CMOT?

PostBellum I agree if you're going to try then maybe a simple one . Would he listen to a talking book or what that hit a snag with following a plot?

My day as ever is not straightforward . Conversation with Mum this morning, she doesn't want to go. I left it and ended the call. She's currently refusing to let us take anything over there. If she's still doing that at the weekend I'll call the Home and explain that on the Friday I will be requesting the Memory Clinic to assess her capacity and if found not to have capacity to proceed with a Deprivation of Liberty Order (if I've understood the procedure. Didn't bother updating Brother.

DD then got sent home as was disorientated following bump on head. However something interesting happened today . Bumped into someone I know who is a physio and her field is the elderly and dementia. She feels current provision is not good, especially when a crisis occurs and is advocating a central hub which brings together the various disciplines and patients/families given an advocate. She feels if certain things were discussed and put in place earlier then situations with everyone imploding would reduce a bit and that Dementia in th future is giant to be a massive problem that can't be swept under the carpet. She's a really lovely person and it was great hearing a professional like her saying things like that. I'm going to have coffee with her when we get to a calmer point as she wants to hear about what has happened.

I was about to suggest talking books in terms of familiar books, and cds of music you know he likes. My ma is at the same stage in many ways but knows it, which is heart breaking for her as well as us. But she liked having YouTube recordings played to her.

That sounds good Wynken, it could be she's a valuable contact and of course it's useful to know someone who works in the field and has a broad view of things.
Good luck with the next few days. For what's it's worth, and you of course are a lot more clued up than me, but if your mother is still refusing, then maybe you could just withdraw for a few days/ weeks. Don't worry about people judging you. Anyone who's been in your situation wouldn't, and if they haven't it's none of their business. Also, I wonder if you might find the Alzheimer's society talking point useful. If you post on there you are bound to get answers from people who've been in exactly this kind of situation, with relatives who refuse to budge but are patently unsafe in their environment and are exerting a huge toll on their relatives.
With my grandfather (he had parkinson's dementia and cancer) it was finally a forced hospital admission after a fall that precipitated things. The social worker said she couldn't believe he'd stayed at home so long.

Post...I could be out of turn in saying this ...as I do not know you or your parents...but if a jigsaw puzzle has more than 6 pieces I hate them...though I have been known to help on the 3 yrs+ one with 8-12 pieces ...and finished it !!!

If they are not into them already....ok I just hate jigsaw s!!

Not much help but my dad has always loved his "gee gee's" (horses). Ity is the only thing to get him out of the house for...on his down days he would not leave the house (in case it rained)...

No it wont we would say ...Put your own bet on I am not doing it (I would if weather was really bad) .

I am not advocating betting ,,,dad does about £1.50-£2.00 a day...but it gives hima focus for something to do for the afternoon watch all his horses loose !

Maybe they could mess with horses names ...watch the race and see who wins ??

Dad used to love crosswords but cant remember the words now (book of maps.....album...not atlas...sort of thing )...but does like word search.

I have got the AD booklet aid/memory things if you want it ...I wont be using it with dad as I know it would be a waste of money....he does not want his brain "exercised" as there is nothing wrong with it

Thank you all for the suggestions. It is so hard to know what to do with him. He ran his own business up until last year and that kept him busy. When he sold the business, he did little bits of ad hoc consultancy work. He did loads of lawn mowing, pottered about running errands for my Mum and enjoyed watching Morse and other detective shows.

There isn't one single thing of the things he used to do that he can do now. He can't drive, he can barely read, he can't write, he can't string even the simplest sentence together, he can't follow a conversation - let alone the radio or the TV. So, Mum takes him for a walk every day - she makes him do the washing up (then re-does it all again), she makes him feed the cats & the dogs (which requires constant supervision), he helps her hang the laundry out on the line & then that is it. He has nothing to fill the rest of his day!!!!!! He trails around the house after Mum - driving her to her wits end - or just sits vacantly staring out of the window.

Bizzey, I think you are on the money about the puzzles. I don't get jigsaws either. My Dad has never done them - so why would he want to do it now. Can't see him getting into horse racing either to be honest. However, you have made me think a bit more about what he used to like. He used to sail a lot and loves boats, so I'm wondering if I could find some DVDs about sailing boats that wouldn't be too fast moving or have too much talking in them and he might be able to watch them.

Wynken - keeping my fingers crossed that you get your Mum in without it being too painful.

MrsFW - any luck with finding places closer to you?

Hummm...you have me thinking about something now post...

Dad can sit and just stare out the window as well....maybe they "need" to do that to rest their brain??....I do think it is more frustrating to us seeing it than it is for them doing it ?/

What about "asking "him to do something for you (as aposed to saying do this ...it will be good for your brain like my mum says to dad !!)

EG growing pot plants/veg....tomatoes...strawberry...so every day he has to check on them and stuff.

I know you said they live in a rambeling old farm house ???sort of place but they could be positioned somewhere where they can be seen so he has a visual reminder of things to do ??....more to give your mum a break if anything..

My mum is finding it hard that she cannot have the same conversations with dad all the time as they used to ...I think he burnt himself out the other day and was a bit distant the next day.

Dad was already in a slow decline physically due to his other problems,so we are only noticing his mental decline ....but to see both at the same time must be hard.

RE mowing the grass.....can you not advertise for some teenagers to come and do it for pocket money/Saturday job..then when you visit you could visit as a"daughter" and not always as a "carer....this needs doing that has to be done " sort of thing???

I seem to have the easiest situation and that is hard....I so admire you,wyken CMOT bob and MrsF....and anyone else who I have forgotten !.....in what you do .

(just as well I am not in a chatty mood this morning ...I might have done a long post !!! )

Your poor dad. My guess is that there is depression linked in with his dementia. My mums psychiatrist certain suggested that a major factor for the improvements shown after taking Aricept was that the patient felt sharper, so less depressed.

Is there anywhere he can go? National trust gardens or the local park, simply to sit and look at flowers. Other senses such as smell, colour, music etc may not have declined to the same extent. Anything like a "memory clinic" or University of the Third Age. Is there an OT linked with either SS or the memory clinic that you could speak to.

The activities organiser at the swanky care home my mother spent 5 weeks convalescing in at the start of the year (Wyncham looked at another in the same group) and explained the point of some of the activities. My mum had really enjoyed the short walks and the outings. However the main point was apparently therapeutic to help prevent people from forgetting how to walk. They had all sorts of things "Scrabble" with only about 5 letters, a daily discussion of news events, music, flower arranging, "down memory lane", exercise class. All on low skill base, and most not lasting too long but breaking up the day. However they clearly needed to put a lot of effort in to getting people to participate. They also had a number of small routines such as sherry before lunch, which also served to extend the lunch time.

My mums psychiatrist emphasised how important it is to keep using your brain by meeting new people and seeing new things. Mine luckily likes being physically active and has been able to get back to walking to places etc. He is even suggesting she resumes going away. If it is physically possible for your dad, Just Go holidays are a family run coach firm who focus on the older market, and who have a good reputation for really looking after people.

Need.. ....I am sorry I forgot to write your name in my earlier post !

WBN, your mother is bound to wake up confused and demand to go home. This will happen for at least a couple of months. This is understandable. In time she will start to gain familiarity with where she is and to forget where she used to be.

Four months on and my mother has no wish to go back. Indeed the idea of a move is too daunting. Plus she is happy where she is.

It is worth discussing this in advance with the home. You might do your best to pack and unpack key things before she gets there. Key ornaments and photos are important. Have someone ready to hang pictures early on. Print up change of address cards, and leave a stack with her so she can put one in her handbag if she goes out.

The first week will be very hard, and I was told to expect it to be 2 months before my mum really settled. The stress might well cause a dip in cognitive ability, and the confusion and desire for control might well cause strong emotional outbursts. If you can see, it as part of the process. This really is your/her best option. Warn your brother and ask for his reinforcement.

I also wrote down what was happening in a briefing note, so she could reread the reasons why she had agreed to move. The carer said she found this useful. The key is to regain orientation, where, why when etc. Then you can all move forward.

Encourage people to come round, so she realises she has not left her old life behind. Flowers were the best gift as the brightened the place up.

He does like going for the walks - but can only really go out in the morning or at lunch time because he completely runs out of steam in the afternoon.

Mum is nervous of taking him anywhere too complicated, as she has to take his giant nappies with her and needs to feel confident about access to a disabled loo with plenty of room, so she can help him with all of that stuff.

The stroke has left him doubly incontinent, so I can't see them going anywhere on a coach or even a long car journey to be honest.

He was turned down for speech rehab after the stroke because his dementia is too bad. All OT has ended as well. SS not interested because he is being cared for by Mum.

Have found a sailing documentary DVD that may interest him.

To be honest, it could be a million times worse - as he could be on his own. I'm mainly trying to think of some things to occupy him for a bit, mainly to give Mum some breathing space so she doesn't run for the hills or go mad herself.

Thank you all for listening (so to speak) and for the suggestions - as ever it is so helpful to know that you understand.

'Nuther thought. My mother was offered a befriending service. Would someone, ideally male, coming in on a regular basis to spend time with your dad help. The memory lady offered it, but I think it was some local charity. It would provide a bit of diversion and give your mum some time for herself.

Spoke to my Brother, Mum had been on to him asking for night Carer. He has spoken to an agency, got prices and says that if she falls they will call paramedic and I will only be notified if serious, same as if she was in a home. He wants to increase up care package in day and will apparently be home end of next week to sort all this, including sorting spare room so Carer can sleep there and ordering lower bed for her.

He's taken on board she needs her fluid intake monitoring and checking her Meds are actually taken. He will apparently be taking over the daily phone calls, ordering more Meds, incontinence pads and is arranging finance for the night Carers. Apparently I will no longer need to worry and will have my life back and be a proper mother again.

The flat is paid for one month and he is talking about continuing to pay that too so when it goes pear shaped she still has the option to go in. He's clear that it may be she'll have a crisis and the flat might no longer be an option. Clearly I have to go along with it as it's what Mum wants and it takes two of us to sell the house as we're joint Attorneys on that aspect. He will find though that every professional and agency will have his number as point of contact and I won't be speaking them, other than the Memory clinic and SW to ask for a meeting once he's here.

I am officially not going to worry as it's no longer my problem. Had a good time with a few glasses of Pimms at school fair last night, the end of and Era as it was the last First school fair I'll be going to, which I've been doing for 10 years. DH and I are off for coffee this morning and I'm hoping to get to the allotment maybe. I can get on sorting the vast amount of things that are coming up for DS in the next few weeks and might even book a meal out for when he's at residential now I am apparently free from Carer duties and phone calls.

DH is pretty confident the whole plan will have fallen apart in 3 weeks and was googling images of flying pigs whilst my brother was outlining the Grand Plan as it will be referred to from now on.

Hello. Can I post a little messge here? I was going to start a new thread but then I saw this thread and thought maybe my message could hide in here and be read by understanding people. I am sorry, I have not read the rest of the thread, I am just going by the title, so forgive me if you have all formed a tightknit group and moved on from the basic idea of the thread title.

My mum has a form of dementia - seemingly not Altzheimers. I had her and my dad to stay for a couple of nights until yesterday, and since they left, I have not been able to stop crying. It is complicated to explain. My mum is pretty good if you met her in a social situation. She finds it hard to follow conversations sometimes, but basically, she was (is? ) a very intelligent woman, a retired doctor, and she is still capable of debating, giving advice, etc. But other things - eg brushing her teeth - floor her. She has also physically deteriorated hugely. Gone from a once active life cycling, hillwalking, even jogging a couple of decades ago, to now hardly being able to negotiate a footpath. And it took my dad and I to help her swing her legs over a pub bench on Thursday.

I don't know why I am posting this. I guess others have a much worse situation. I just can't stop crying and crying, feeling her life has gone. Coupled with this, my dad, who is in good health, nevertheless is 'winding down his affairs' - it is so depressing being in their company, yet so heart-wrenching saying goodbye when it is time for them to go.

There is so much more I could say, but I can't see through my tears, and anyway, I feel a bit of an infiltrator here. Thanks for reading, if you have.

Dumbledoresgirl....Please join us....we are not that tight knit that no one else can join...We are a few regulars who "talk" and write what we want to get it out of our system ...and we actually have a few laughs...or at least smiles !!

Has your mum been diagnose with a form of dementia properly...is she under medical care.

I don't blame you for crying and feeling like that...my dad's case is different to other's here as he already had some physical lots deteriation due to
other things ...so when we got the news he had early Alzheimer's as well mum and I were in a dark place for a while .

Please keep posting.....and tell us more if you want

wynken....I read your post thinking " Wow this is all good news and positive stuff for you "

Then I got to the bit about flying pigs......methinks you now wrote your post with sarcasam in your head !!!!

Still you have got a breather so enjoy "only" being a wife and mum.

You never know....you might start seeing pigs flying soon !!!

Thanks bizzey. I have to admit I am in a right state today (and yesterday) so I'm not up to writing lots at the moment, but just to answer your question a bit: my mum had a very severe stroke coming up to 7 years ago. It didn't really affect her too much physically, but it made her partially sighted and really affected her cognitive abilities (I think that is the right way to describe it - anyway, her ability to read, write, think, process things). So she hasn't been 'right' for 7 years, but recently it has got worse, and now it seems a lot worse.

Yes, my dad had someone out to the house to assess her recently. Dad can't do as much for her as she maybe needs as she does not want to admit her situation is as bad as it is. She is, very understandably, depressed but she won't take ADs as she didn't get on with them in the past. She is/was - it is hard to work out whether to describe her in the past or present as she has changed so much from the woman she once was - extremely strong-minded, and my dad has always respected that so I think he feels it would be some sort of crime to take away what independence she has (ie deciding whether she takes ADs or not) since she has already lost so much of herself to her dementia. Does that make sense? Anyway, so yes, finally, dad got mum to see the GP and the GP arranged for someone (a neurologist I think) to assess her, so the dementia diagnosis has been made, although mum has not had any tests like scans. But at least she is 'in the system' now iyswim.

I have read a few posts here and I feel a fraud as my mum still knows who I am (though she muddles the grandchildren a bit) and still lives at home with dad, and, thanks to dad being so fit and active, they somehow still manage to lead some semblance of the life they used to have, but it is visibly closing in now, and seeing their lives close in, makes me feel mine is too. I don't know, it is hard to explain. I am nearly 50, but I don't feel ready to lose either of my parents either to death or dementia.

Dumble...If they have come to stay with you ,then I am guessing they are not that local to you....so you "see" more than if you were with that person everyday....and do not under estimate that bolt of lightning that hits you when you realize "things have changed"

All of our situations on here are different....but the common denominator is that we are trying to do the best for our parents...and our children.....and DH'S few at least that is one thing off my list then !

You are not a fraud ...just like me at the begining stages....I have only been on here for a few months ....but it is really good sometimes just to type .

My dad lives at home with mum in an adapted house for his "leg"needs ...stair lift and bath lift,scooter to get out and stuff.
I live 5 mins away.After his diagnoses I felt "guilty" about him having this diagnose's because mum and I spoke to GP and pushed for further investigations as we just "knew" some thing was not right.

But he is now on medication for it and we have been given good acsess to alot of help groups "when we need them"...

2 months ago when we got the news ...by a very frank doctor(dad had had CT scan ,bloods and memory tests)...I felt like a dark cloud had settled on me ...really heavy that is was so difficult to explain...or think bejond.

I actually forgot to take my ds to a birthday party

You like me and other's are dealing with both parents as they come as a package.

I have to be strong and positive for my mum ...and not get wound up by my 2 brother's who say he is just getting old!! (My mum put them in their place when she reminded them that she is the same age as him !!!)

Anyhow ...in my long winded way.....post what you want ...nobody judges.....even if it is not about Dementia...(check out my post on the plastic penis !!!!!!).....It is good to talk !!

Dumbledoresgirl a big welcome, though so sorry about the circumstances that have brought you here. Take a seat, we have big boxes of tissues and will ply you with virtual , whatever you need and you don't need to say anything, just sit and be whilst you catch your breath.

My Mum is also a very intelligent, independent, strong woman who grew up in war time Germany when things were harsh. It is very very hard to cope with her decline. She scored very highly on the MMSE questionnaire but poorly on another plus had a superb range of strategies to hide her problem. I think that's why no one other than DH and I realised for so long. I totally get what you say about lives closing in, yours and theirs.

There may have been lots some sarcasm in my post Bizzey ! To be fair I think he has realised both DH and I were at breaking point. He's emailed me today to say he's moved successfully but not had a chance to think about things so we'll speak tomorrow. But then said would I prefer to leave that to Monday so I can have a Mum free weekend which I have said I would like. Did ring her quickly a it dawned on me I am going to have to break her of the habit of asking me to do things. She had ideas that I would be sorting spare room for Carer so put her straight on that plus she asked me to sort some more frozen meals from one company and I said she'd need to ask my brother.

She then got stroppy and mimicked me. I asked her to stop being nasty and that I had done a lot to help her. She conceded I had but that my tone was irritating her. I said there wasn't a tone, I was just explaining how the meals could get sorted, isn't it nice that Brother is doing all this. Yes she said, I told him you were cracking up! Whole thing lasted 15 mins and that will be it for a few days. Updated my Dad so that's done and bought new vases for the lovely flowers he sent. I need to spend tomorrow getting on top of DS's homework that has been set for the parents to do and deal with the fact 6 weeks of no school is starting to loom large.

Wynken ...good on your brother to step up/realize finally It does sound positive so hopefully it will now be 50/50 at the best ?

Breaking that habit is going to be hard

Hi dumbledore, welcome to this thread and we definitely welcome anyone who is in this boat and requires understanding and the ability to vent. The way you describe your mum reminds me a lot of my dad. He has alzheimers, but used to be a university lecturer and until a year ago he could hold forth on anything related to his PhD subject, while being utterly unable to fill in his tax returns, tend to his personal hygiene or remember who his siblings are. I think this might be common to those who have dementia, after having developed an area of learning to a high degree.
It is really upsetting and near impossible to come to terms with when you as their child. I ve been in counselling for a year and that is helping. I fulfill my responsibilities POA, social support, visits etc but it is very hard, especially when none of my friends are in this boat.

Wynken - good news that your brother is stepping up. Shall keep my fingers crossed for "The Grand Plan"!

Hi Dumbledore - welcome and hugs to you. I spent days weeping after Dad had his stroke and every now and then when I'm tired, it still catches me. So much great advice and support on here. I'm sorry you find yourself here - but you couldn't find a better bunch of MNers to post with.

Another trek down to my parents this weekend. Managed to have a slightly more realistic chat to Mum, who said she'd get through the summer and then have a think about things going forward - which may mean she could be more receptive to thinking about moving. She has finally realised that Dad is not going to improve, but will actually only get worse. He seemed reasonably ok physically, although very away with the fairies - but I think that is probably a good thing.

I helped Mum sort out a few things on her email, cleared another small mountain of catalogues and paperwork. I did a bit of cleaning but didn't do any mowing. It is sad to drive down every week and see the place looking more & more unkempt. The kitchen is filling up with additional surfaces. So the ironing board is permanently left up and covered in paper, some kind of ancient waitress trolley thing has also been found and brought in and that is also covered in paper, as well as every freaking built in surface and the kitchen table. Go into the dining room and the table there is covered in paper, as are the window alcoves. The desk in the study is also covered in paper and there are piles & piles of paper on the floor. It gives me an increased pulse & makes me want to scream - but I cannot convince Mum to sort it out. I set up a very comprehensive filing system for her and I file whatever I can - but bloody, bloody hell.

PBB- what is it with our elderly parents and their love of paper in all its forms? I went to visit Dad last week. Needed to meet a builder because his investment flat (which he has forgotten exists)/emo/te/3.gif needs a whole lot of work done, and I am having to get quotes, check I'm not being ripped off etc. Anyway after taking Dad out for lunch (I chose his meal from the menu) visiting the library, bank (the cashiers greet him by name, he's in there most days) I thought I'd spend half an hour tidying his room. Could barely get through the door which was semi jammed with boxes and boxes of random papers: his old PhD work, bills and bank statements some going back to the 1980s, old newspapers, even condolence cards from when mum died in the 90s. And that is after me having done periodic purges. Three or four years ago, before he was diagnosed, I sat down and wrote him a letter about my concerns re the state of his house, and how I feared it was going to become a dangerous place to live in unless he accepted help/ got a cleaner/ started doing some serious cleaning and chucking out. He denied ever receiving the letter. I later found it on his desk, opened. I used to want to scream "why the bloody hell do you need a 2007 copy of the daily mail??" I controlled myself, but nearly tipped over the edge when he tried to prevent me from emptying a dustbin full of used kleenex (he actually lets them dry and re-uses them, and thinks he's being very smart). I just chucked them in the bin bag regardless, and managed not to seriously lose my temper.
So I tidied up the best I could. One of the things that irked me the most were the weasely charity letters "Dear Dr X, you are such a kind person so we know you will not let us throw little Maria back on the streets, she desperately needs this operation" " we are enclosing our gift of 12 pence (wtf???), we know you will faithfully send it back with your donation". I had great joy in bundling up all these begging letters and binning them as soon as I got to the train station.
As Churchill said, keep buggering on.

whatabout - we could probably fuel a small power station!

M&D get loads of charity letters too and have a vast collection of free charity pens. They have multiple direct debits going out to various charities - fairly small amounts, but still adds up to the best part of £1k a year. I tried to talk to Mum about cancelling them, but was told that things weren't that bad yet.

I nearly burst a blood vessel every time we have to look for something that Mum would like my help with and we have to trawl through the various heaps in the kitchen and then after half an hour of increasingly fretful searching she remembers that she took it up to their bedroom for safe-keeping (where there are more piles of paper)!

As Churchill also said - If you are going to go through hell - keep on going!!!!!!!!!!!!!!!!!

My only comment on the paper is there is a whole load in the woodburner here that's come from Mum's but it's too hot to light it !

PostBellum I think your Mum saying she'll see how the summer goes is encouraging. It seems to be such a slow process to get others to accept the situation. I'm amazed you and Bob aren' at the GP getting your blood pressure checked.

Today's development is brother is arranging 24 hour care and she's seeing consultant at memory clinic on Friday as well as the nurse for med review and capacity assessment. The nurse is familiar with her and her fluctuating capacity, which is definitely does - today she thought she was going I to th flat for two weeks. Left it all for Brother to sort.

Had a good talk with the nurse on the phone. I was saying about the ripple effect and she was telling me about a talk she went to about supporting children who are affected by a family member with Dementia. There's discussion about going into schools and helping. Have also found we have a Dementia Research unit newly opened down here.