So bizarre !

[canary]

I love the photos. It looks like you had a fantastic time.

Morning all,

Canary, I think she is going to the loo - mainly because she often forgets to flush, these days so OH or I tend to nip in after her, even during the night, to do it for her. She suffers from 'stress incontinence' (has done for years) and at the clinic they said that this would mean that her bladder doesn't 'relax' properly so never quite empties fully - thats what causes the 'dribbles' when she coughs or laughs, if I've understood the nurse properly - but it also means that when she is asleep, the bladder will also relax and empty fully There is medication that can help - but unfortunately, it also can worsen delusions and hallucinations, so she can't take it.

That makes sense. It was a bit of a long-shot, but I just wondered.
I hope the bed arrives soon

Agrees with Essie. Pity you had to come home to that

 

[Spamar]

Fantastic photos, Ann!

 

[RedLou]

Ann - I'm seething on your behalf. It's nothing short of emotional blackmail.

JM - I dealt with the hurtful, harmful delusions same way as Ann. Told my father exactly the truth and very firmly. So if he had come up with this kind of delusion I would have told him he is not allowed rings in the hospital (in your case CH) in case they are stolen and therefore the ring is in the safe at home (wherever you can suggest) for safe-keeping. I think, after all your daughter has gone through, that she must not be exposed to this kind of false accusation and I feel for you and understand why you are so distressed by this.

I just got an email telling me my dad's flat keys have to be 1000 miles away by tomorrow or completion won't take place. Should really have told me that before, I think. What are the chances of DHL letting me down, do you reckon?...

 

[Grace L]

Hello Raggedy Anne...
For months now I've been worried about MiL and her driving,
and when there have been poor driving events worth mentioning, I've written to her GP.

He must have at least 6 letters of mine, reminding him / asking him
if he had contacted the DVLA. None of my letters have been replied to.

My sister finally wrote to the DVLA a couple of months ago, telling them 'warts-n-all' x y z ....
We think the DVLA are finally listening to our concerns....
MiL may have been ignoring the DVLA letters, I cant be sure of this, but its is likely.


Her family (sons and daughters) are not keen on her giving up driving,
as this means they would have to start helping out, running errands etc...
Some of them live in the same town (other side), but are not far away.

So sad that they don't want to help mum / mil / granny ....she was always a hands on Granny,
would help anyone in need.... and now its her time, they don't want to.

At the moment she is still driving, but I think her days are numbered.


My niece is drafting a letter to the Priest at MiLs church, to see if they can help arrange (before its needed) transport for Sunday Mass, should her own children (my BiL/SiL) refuse to take her.



Oh Ann, just ...... sigh..... I don't know what to say....So unfair. How is this Legal?

OOOh.... lovely photos, a real Pro .....




One of the strangest things my husband accused me of stealing (and sometimes selling?)
was his RED walking boots , he could describe them perfectly.
I think he had them when he was a very young child / toddler, but nothing like it as an adult.

I hated dealing with accusations of theft, so hurtful.

Have a god afternoon everyone xx

 

[Slugsta]

Ann, I am furious on your behalf! What would happen to MIL if you could not take care of her? How awful to think of vulnerable people ending up in an inappropriate hospital setting - especially one that is accepted as being inadequate (to say the least!). So, you will now keep MIL with you for as long as you possibly can. Until you have missed your childrens' childhoods. Until your own health is broken. Until you are so exhausted and sore that you cannot enjoy life even without MIL's care to deliver. Care in the Community in all its glory

JM, I enjoy hearing your cycling exploits. As a youngster I was a real disappointment to my parents because I hated cycling. I cried until my bike was sold and was then so glad that I would never have to brave the roads again. I was a happy couch potato. In my 40's I took up running and really loved being out in the fresh air - splashing through puddles was my favourite Then, in my 50s, I picked up a chronic foot injury and couldn't even walk comfortably let alone run. So, with great trepidation, I learned to cycle again. Always nervous, never good at the off-road stuff but still able to enjoy being outside. Sometimes I would accompany hubby and friends on my bike while they ran. 'Enforced dismounts' were common 5 years ago a sneeze exacerbated a long-standing back problem and I am now unable to cycle. With great sadness, I sold my bike recently, no point in having it sitting in the garage

Red, sorry to hear about your key issue.

 

[jugglingmum]

Ann love your photos. My favourite place Anglesey - and this time tomorrow I'll be there Happy dog happy kids. Rhosneiger for lunch on Sat.

No idea if I could get a cheap ring. It's three diamonds on a gold band, very similar to mine (I didn't know until she asked me to take it - hers has bigger diamonds.She wants me to have it for safe keeping - but then keeps thinking daughter has it. Didn't go round today as had to work so will be sunday now before I go.

Grace - slow and painful progress - we're all here holding your hand.

Ann - no words for phonecall but on a practical level, and to call his bluff do you know where nearest home might be that could cope - perhaps phone him back and ask him to find this out for you. Flintshire, denbighshire or cheshire may have something near you??? No good saying your county doesn't have it. No idea how it crosses from Wales to England. I often meet people who are surprised I spend so much time in Wales, but I only live 5 miles from the border - 6 miles from my house to Chester, but borders seem to be barriers for health and social care.

Red - hope you can sort something out with keys.

 

[Ann Mac]

Morning all,

Red - hope that DHL don't let you down over the keys hun - talk about short notice!

JM - lucky you off to Anglesey - enjoy your lunch in Rhosneigr and say hello to that gorgeous beach for me Still haven't found you on those photographs - intend to have another look later!

Right - with Mil, this is how the situation stands, going on what info I've been given. At the moment, she would be accepted into the home where she goes for respite, if we chose to go down that route. The issue revolves around the fact that none of the meds tried so far to combat the delusions and the demanding behaviour have worked long term, and each time she decllnes her behaviour has become more of an issue - and with the last decline, she was edging on being too much for day care (and therefore the home) to cope with. The (current locum) consultant has put in writing that given her type of dementia and the presentation, it maybe that NO medication will be able to combat her behaviour long term. If we want her to go into residential care right now - it could be done. BUT, whether she is in residential or with us, if her behaviour deteriorates/develops to a problematic level and either us or the home feel we can no longer cope, then there seems to be basically nowhere for her to go in the whole county. The very last LA home is in the process of closing down (currently a public outcry about it round here) leaving only private homes. Because of the very high additional cost factor of the extra paperwork and staffing required to deal with EMI Nursing patients with extreme behaviour issues, none of those private homes are willing to acccept patients with those issues. So, if Mil gets to the point where she is in need of a residential setting that can cope with 'challenging behaviour' that includes potential violence or the need for a much higher ratio of staff to client care because of it being very demanding, then there is nowhere for her to go. What was once a unit in the local hospital where clients could be admitted for assessment to enable their medication to be (hopefully) sorted to combat such behaviour is now filled to the brim with patients who are stuck there for sometimes months and months, whilst permenant placements, outside of the county, are searched for. There are not just dementia patients there, all sorts of mental health illnesses are 'catered' for and by all accounts, its an absolutely hellish place to be stuck in. I've been left with the very strong impression that its no longer an assessment unit where people can be treated - its a unit where staff are struggling to do more than just contain the situation. And if a permenent placement is eventually found, it could literally be anywhere in the country. Even with Mil being self funded, there is no home in the county that is likely to accept her if her behaviour declines to the point where she needs a much higher level of care because of it.

To be fair, those I've spoken to openly acknowledge that this just isn't right, that its appalling, but their sympathy doesn't change the facts. Yes, I feel like we are being emotionally blackmailed - I mean , what a choice if we do feel we can no longer cope! Basically being told that we will have to condemn her to possibly several hellish months in a unit that sounds pretty close to a Dickensian bedlam and that possibly (maybe 'probably' is more accurate!) being followed by her being moved literally anywhere in the country, where obviously visiting and keeping a close eye over her is going to be dreadfully difficult.

I honestly have no idea at the moment which way to turn. The meds are - for now - seeming to be helping. She isn't issue free, still some agitation ,'pestering' and sundowning, but all very mild by comparison to the last few months. But if she goes downhill again, whatever we decide will inevitably be heavily influenced by knowing what the possibly options are - its not just can we cope here or will we have to opt for residential, any more, is it? Its can we cope or will we have to send her into a hellish situation, not knowing when somewhere suitable for her would be found, or even where it will be - and can we live with what that will do to her?

Hard to believe that this is the situation in this day and age, isn't it?

Hope you guys all have a good day xxxx

 

[annebythesea]

Ann I am not a regular poster, though I do follow the forum. I am really saddened by the situation you are presented with. I do wonder if perhaps the transition your mil has to make most days from your home to day care and back make things harder for her. In other words I wonder if she would be calmer and less prone to challenging behaviour if her surroundings were more consistent for her, which in practical terms would mean being in residential care.
My stepmother was quite distressed at home with Dad, not recognising him and suffering a lot of delusions. Dad resisted a move to care I believe for far too long, but after a decline in her physical health prompted the move after she was admitted to hospital, the calmer environment seems to have suited her much better. She is now happy to see Dad when he visits and her needs are attended to by the staff, helping his health also.
I know the reason your mil was calmer in the home for her respite over the weekend was possibly the prn meds, but wonder if staying in the same place also helped.
Hope you find a way forward, Anne. (BTW I love your photos)

 

[Grey Lad]

Ann I am not a regular poster, though I do follow the forum. I am really saddened by the situation you are presented with. I do wonder if perhaps the transition your mil has to make most days from your home to day care and back make things harder for her. In other words I wonder if she would be calmer and less prone to challenging behaviour if her surroundings were more consistent for her, which in practical terms would mean being in residential care.
My stepmother was quite distressed at home with Dad, not recognising him and suffering a lot of delusions. Dad resisted a move to care I believe for far too long, but after a decline in her physical health prompted the move after she was admitted to hospital, the calmer environment seems to have suited her much better. She is now happy to see Dad when he visits and her needs are attended to by the staff, helping his health also.
I know the reason your mil was calmer in the home for her respite over the weekend was possibly the prn meds, but wonder if staying in the same place also helped.
Hope you find a way forward, Anne. (BTW I love your photos)

I wonder as well? Could you trial it for a while and see how it goes. A long holiday for MIL or elongated respite for you and your family. Being in one place has got to help -I think!

 

[Batsue]

I think that an idea has been struck here, could it be that going from home to daycare and back to home each day is causing some of the problems, if MiL was in one place for a long period of time she may not be so unsettled.

By the way, fantastic photo's, your style is similar to my brother who is a professional and lives on the west coast of Scotland.

 

[2jays]

I do wonder if perhaps the transition your mil has to make most days from your home to day care and back make things harder for her. In other words I wonder if she would be calmer and less prone to challenging behaviour if her surroundings were more consistent for her, which in practical terms would mean being in residential care.

[cut]

the calmer environment seems to have suited her much better. She is now happy to see Dad when he visits and her needs are attended to by the staff, helping his health also.
I know the reason your mil was calmer in the home for her respite over the weekend was possibly the prn meds, but wonder if staying in the same place also helped.

My thoughts too.

It's not an easy decision to make I know, especially as the "professionals" are being sooo um, er, blackm..... unhelpful by saying there is nothing suitable in the area...

Your last post, if you have the energy, should be cut and pasted into an email to everyone who makes decisions for the county... Local politicians, member of parliament, head of council, local newspapers, local radio, BBC.

I suppose you could call that a kind of blackmail... I'm not one for lowering myself the others low standards, by using blackmail, But on the other hand, I understand two negatives make a positive....

Crisis point isn't it. And just when you are really at the point of needing support, it's not there for you.

I suppose your next move is to research carers coming into the home to help you, once they decide mil can't go to day care....

Hugs xxxxxxx




Sent from my iPhone using Talking Point

 

[RedLou]

Yes beautiful photos, Ann. A little beacon of beauty in the rubbish of dementia.

The way I see it is: if she deteriorates towards violence you cannot keep her at home - it would be unacceptable for your daughter and you to be exposed to the risk. If she doesn't the home will take her.

So the choice is actually quite clear and you should not feel anguished about it. If she is violent and ends up in the hellish ward, well you didn't have any other choice. If she isn't violent and you feel you can't cope, the home will take her.

Have I got that right?

Worth considering the home route now, as others have suggested? She does seem to get agitated by thinking she's late for work all the time.

*hugs*

 

[Ann Mac]

The trouble is, the previous two weeks she has stayed in respite, she hasn't been settled at all - its only the last weekend, with the new meds, that they say that she was 'much better'. And she may fret to go to 'work' - but frets just as much, if not more, to come home.

Such early days yet with the new meds, that I can't call it. IF the level of 'behaviours' (for want of a better word) remain at the level they are at at the moment, then its going to be easier than it has been. If they don't - well, thats the issue, isn't it? Violence remains my line in the sand, can't see anything changing that - we have had none of that at home, alarm bells rang at day care when she spoke to other residents in what was a 'threatening manner'. I can't see anyway forward if her behaviour does deteriorate to the point where day care can't/wont have her there - there doesn't seem to be another day care option and I know I could not cope with 24/7 care without a break. So if she becomes violent, if we lose day care and respite, then again, there is no choice.

And we'll just have to somehow come to terms with whatever happens to her afterwards - which makes me feel very sick and angry.

 

[RedLou]

All I know Ann is that she's been very lucky to have you and the rest of the family. Without you, things would have been much grimmer, much earlier for her. I hope you can take pride and comfort in what you have done for her, whatever happens next.
*more hugs*

 

[Slugsta]

(((Ann))) the more I learn about the help and care (un)available, the more I hope that Mum doesn't live long enough to be in that situation

 

[AnoviceinN1]

Hi Ann, I am sorry to read of the very difficult situation you are in. I don't have direct experience of caring, although I have had two family members with dementia. In one case, the experience of being sectioned in an NHS dementia unit actually seemed to do a lot of good: they were able to adjust my uncle's medication and they were very kind to him until he left for a specialist EMI unit. The other person was MIL, who lived in the US. With that caveat said, I would like to offer some comments.
Reading your posts, particularly about her reaction on returning home after the most recent respite, I also wondered, as Annebythesea and others have done, whether the current arrangement of living at daycare by day and at yours by night is actually doing her good, or whether it is contributing to the confusion.
IMO, the fact that she didn't settle in respite over a 2-week period means little: many people on this forum write how settling in can take much longer than that and, you say, she may be doing better on the new medication.
As I see it, you basically have three options: (i) stick with the current arrangement for now and accept that, when there is a real crisis, you may have only unpalatable options; (ii) move her into the current daycare home as a permanent resident as soon as they have a place - this would have the advantage that, if you do it very soon before her dementia gets worse, she will have a better chance of settling more easily but you have to hope that her behaviour does not decline quickly to a point where they say they can no longer cope. I also wonder whether it might be easier to get her accepted now, rather than when she is more advanced. And finally (iii) look for a home in a neighbouring county, one which would definitely be able to cope with her for as long as she lives. She would be further away in the short-term but you would avoid the risk of her being stranded in the hospital unit you are understandably keen to avoid. And you would have her somewhere within reasonable driving distance as opposed in the south of the country, for example.
I think that, if it was me, I would at least explore the third option and I would also have a very honest conversation with the home where she goes now.
Good luck - and, on a more cheerful note, I thought that your photographs were really wonderful. I am sure that you could sell them if you wanted to, either to make some money for yourself or as a fund-raiser.

 

[Mrsbusy]

Evening Ann,

Firstly your photographs are amazing, you should have an exhibition sometime when things calm down eventually, something to be proud of.

Secondly, I have made a few observations over the last few weeks so although none are advice I just want you to be aware of them. My grandmother had dementia in the 1980s and I can honestly say she ended up in the hellish hospital ward of which I remember visiting as a teenager only once, then my father said I wasn't to go again. How disgusting and sad that in the years that have passed and all the publicity given to governments saying they are pouring money into this blasted disease not one jot has changed in all that time! It's not for the lack of trying by the public, the nurses or carers so someone has and Is Letting us all down somewhere.

Another query I have is if for some reason you were unable to cope as fantastically as you do what would become of her? As we all know we do make the choice to care for the sufferers in their homes or ours but only because we care and think we should help them along their bumpy path with it. But it makes me wonder if sometimes the powers that be play on our emotions and know we will push ourselves to the limit before any support is offered or a place in a home is found. If something unexpected happened to you or your family they would have no choice but to support her somewhere somehow, so why can't they do it now? Because targets are to be met or boxes ticked? I would as somebody else has suggested speak to MP and press and anyone else who will listen.

Your daughter sounds a remarkable young lady, like her mother, to cope with all this going on in her life. My son is so anxious about his grandparents and their dementia he has to be home schooled and when we visit them together, he has panic attacks as he finds it so stressful and they aren't as bad as your Mil yet. My eldest son said to me this year something which made me think, Mum stop looking up and start looking down.
This meant basically stop putting my parents ahead of my youngest, which as much as I tried not to, sometimes I had to. So now even though it's hard to do I put him first and they have to fit in with him as he's now doing his final school year and it has helped I think. I know my parents would understand why I'm doing this if they could comprehend the situation and they have chosen what to do with their lives and so I do owe it to my son and myself to be a bit selfish now as his future depends on it. I just think you and your family need to do the same and think what your Mil who does seem to have a heart of gold in her normal years would wish you to do for you and your family. Remember it's the blasted diseases fault not yours.

Hugs to all of you.

 

[Ann Mac]

Morning all,

Thanks for all your advice, everyone. I have started to make enquiries about what is available in bordering/close counties as AnoviceinN1 suggests - it is only enquiries at the moment, but I sort of feel that we need to find other options on a 'just in case' basis. As for what would happen to Mil if I became unable to care for her - I think that's the same for every carer, Mrsbusy, sadly If it happened right now, then a stay, either short term or maybe (if necessary) permenant in the home she goes to for respite. And if it happens later and the behaviour is an issue, then I hope we will have been able to find somewhere reasonably close, albeit in a different county, that we have as back up. I honestly don't see the point in even considering asking the LA for help, given what they have made clear is the only available options from them, if her illness makes her behaviour worsen. Best option - I think - is to try and find somewhere where (if we did decide to go down the residential route) could care for her no matter how she deteriorates. Then - if at any stage - we do feel 'that's it', then we won't have to deal with the hellish ward and her being placed somewhere where we have little choice and which may be far away. She will be (at least for the first 12-18 months) self funding and I hope that would make it a bit easier too! I aso think its a given that the 'powers that be' are very aware that they can leave carers to cope and carry the burden of care to a massive extent, that we all do it because of love and loyalty, because we care - they take advantage of us all. Its incredibly short sighted on their part, because more support to keep someone at home would probably (certainly?) save a lot of funds in the long term - but the current economic situation means that they are only focused on saving pennies now, rather than pounds later.

Thanks for the comments on the photographs too - hard to go wrong in a place like Anglesey, felt like everywhere I looked it was worth pointing the camera, lol. Still got all the puffin Island shots to share, just trying to find the time!

Picked Mil up last night and the 'senior' grabbed me for a word. No massive problems with Mil (in terms of her upsetting or causing problems for other residents) but it seems like they are still getting the constant pestering. She's rarely still, pacing all the time and getting fixated on odd delusions which she then batters their ears about, demanding attention and a lot of reassurance. The last 3 days its started from more or less when she has arrived in the morning. Although I've sorted it for them to give her a dose of the lorazepan at lunch time (initially prescribed as a prn, which they are not allowed to give) their observation is that it doesn't touch her, makes absolutely no difference at all. A couple of the actual carers were also present, which is good, because when they speak, it gives me a really clear idea of exactly how she is. All of them expressed amazement about how stubborn she is, how she is so resistant to reassurance and distraction - as one said, its almost like she is wired to not want to be comforted or calmed. I was a bit 'Oh-ohhhhh' at first, half expecting them to say that they couldn't cope or similar, but it seemed to emerge that no, they can cope - what they wanted was to know what else they could do to help - which, given the responses I've had from elsewhere was a bit of a shock!

Anyway, as I had asked them to keep Mil late next Tuesday (when I have that appointment at the pain clinic and won't be home till probably 6 or 7pm) they picked up on that and the upshot is that we are going to try Mil having one or two showers/baths there, every week - which will of course be a massive help to me. They have just taken on extra staff, to help with the day care 'clients' so they assured me that this wouldn't be an issue, that they would be more than able to 'fit in' sorting Mil. Bathing her at home is time consuming and can be fraught as she fusses so much - its not a 'task' that I look forward to, thats for sure - so I jumped at the chance. Hopefully starting from next week, it will take some pressure off me and - with Mils habit of suddenly grabbing me during bathtime - it will also help my back. It made me feel 100% better to have them offer help like that - especially given the lack of support from 'Adult Social Care'!

Mil, incidentally, was not amused at being asked to wait whilst we had this chat - she made quite a few rude remarks and on leaving informed me that she had 'had enough' and I was to phone and hand in her 'notice' when we got home Last night we had intermittant delusions and a lot of confusion, but each time she started battering on about where was the 'little girl' she had brought with her, or where was her 'knitting - had I taken it?' or insisting that her son wasn't the same man as I was married to and she wanted to phone her son 'right now', I just got very firm and she subsided almost straight away each time. Oh, lots of dirty looks thrown my way and a good bit of huffing and puffing, but she did quieten down - till the next confused idea grabbed her! I should also say that the bed has been dry the last two mornings, by the way - and the only difference I can see is that both nights she was in pj's rather than nighties - so, have got 2 new pairs for her and though I can't see why they would make a difference, I'm going to put her nighties away and stick to pjs for the moment - so fingers crossed for less washing - at least for now

Hope you all have a good day - dau off to her theatre group this morning, then we are taking Mil to see her friend this afternoon, so usual Saturday routine xxxxx

 

[Ann Mac]

Some shots from Puffin Island - we didn't get as close to the seals as I had hoped, but still spotted a few, plus lots of birds - but again, it was the stunning views that grabbed me!

 

[Ann Mac]

And a couple of random shots from round Anglesey to finish