So bizarre !

canary

Registered User
Feb 25, 2014
11,301
South coast
I'm with you on the 'running on empty', Amy. That's a pretty accurate way of describing some of how I feel - I've said a few times lately that tackling even just the basics around the house makes me feel as though I'm 'wading through treacle' - so much more effort needed than usual to just get through and do even the routine, every day 'jobs' that I used to fly through. And feeling totally useless and negative - constantly wondering how I am going to manage to carry out this new job, when even tackling the ironing is currently taking a herculean effort. And all I can focus on is going over and over the last 3 years, constantly questioning what I did and if I did right, regretting some of what I did (or didn't) do, feeling both bitter and angry at times - when I should be focusing on the future and getting my head wrapped around starting this new chapter. Even though Mil isn't living here now, she and her care is still the main thing I think about, it still feels like its dominating eveything, still my main topic of converation when I chat with my mates - I wonder if I have anything left to offer, to contribute, when so much of me is still caught up in the last 3 years and in thinking about what happens to her now? I need to move on, and don't know how, I guess. The GP appointment has been made for tomorrow - not exactly sure what I should say to him or how to explain how I feel, never mind what he could possibly do to help even if I can make sense when I go - it seems mad that I should feel so 'bleurgh' only now that the 24/7 care is actually over :(

I've read a lot of the same posts as you, Slugsta, about family bringing their L.O.'s home for Christmas - I saw it worked for some, but not for a lot of others. I guess its us, as carer's, that have to get our heads round accepting that doing what seems to be the 'proper' and 'kind' and 'right' thing actually may not be the 'best' thing for our L.O's. Even with the evidence right in front of me, even when Mil's behaviour shows clearly that she has had enough, that she just can't cope with prolonged visits at the moment, I still feel awfully guilty when we leave after just 30 minutes, sometimes less. On one level, having decided already that we won't be attempting to bring Mil 'home' for Christmas day seems almost cruel and even selfish. On the other, we all know with 100% certainty, that bringing her here will cause her anxiety and stress, probably confuse her and make her unhappy, will impact on her behaviour and will also make Christmas day not very nice for the rest of us. Writing it down makes sense - thinking about it is not so clear cut!

Didn't go to see Mil yesterday - hadn't slept at all well on Sunday night, and yesterday afternoon I felt so drained that I headed to bed for 3 hours. OH was supposed to go visit her whilst I was sleeping - but didn't 'feel up to it'. Not pleased, because now I feel that I must go today, if only to sort any laundry - and I'll have to fit it in around the shock wave therapy, which left me very uncomfortable last week and I dread the thought of walking from one end of the hospital to the other, in order to fit in both the treatment and a visit to Mil. Youngest is off to her big sisters for the weekend, and OH has announced that it would be 'lovely' if just he and I go off in Old Red for a couple of nights too - and it would be, but that means (to me) that one of us at least should really visit as much as possible this week, if we are not going to see Mil at the weekend. He is on a run of 3 shifts from this evening, so I know he won't be able to go - which means I'll have to do it. And again, its not that I don't want to see her - I actually feel better on the days when I do visit, in an odd way - but its just that even the current half hour visits really throw out the rest of the day.

I'm going to put in another hour on the wedding editing now, then shower, a bit of housework, then off for my appointment and Mils visit (hopefully - there is a good chance that even if I get to the hospital an hour or so early, I may not find a parking space - seeing and hearing an increasing numeber of complaints about people being unable to attend appointments or visit simply because ther eis nowhere to park!). Then back here, sort tea, try and tackle the ironing mountain!

Take care all, and hope you have a good day xxxx
Ann Im so sorry that you are feeling so "bleugh", but Im not surprised - you have been through so much. Quite a lot of the things you describe - especially the bit about everything going round your mind, questioning whether you did the right thing, regretting things that you had done and feeling angry and bitter - sound very much like a form of bereavement. Would it help if you thought of it in that light?
 

Rageddy Anne

Registered User
Feb 21, 2013
5,984
Cotswolds
Hi

I'm new to Talking Point and I just hope someone may be able to help me.

My dad has mixed dementia, Vascular and Alzheimer's. He has lived with me for quite some time - from when he was well and able bodied but It is perhaps unfortunate that just as I met my now husband (Simon) and he moved in, it became apparent that he was having increasing memory issues. It took us a year to get him to agree to go to the Dr and several months later was diagnosed.

As it coincided with my husband arriving on the scene dad seems to target him for everything he looses and he is constantly loosing things as he has no memory of what he has done with anything he blames Simon for stealing them.

I am caught in the middle as he tells me what a thief he is and that he has taken this and that. He thinks Simon has a 'big posh house' which he keeps all the tings he has stolen from my dad in. He even claims Simon took him there and showed off everything he had taken from him - just to rub it in.

I have been told that the best thing is to go along with their fantasies and just agree and that to argue is the worst possible thing to do.

Could someone please tell me how I am supposed to respond to my dad I feel if I agree with him and say I know Simon is stealing his beloved model railway trains it will add fuel to the fire. But I know he is feeling he has no support because I do not believe him.

Simon definitely does not have a big posh house and dad blames him to taking things when he has been working away and is not even in the county.

Any advised would be welcome because it really stresses me out.

Thank you
That's one fantasy you can't just " go along with". When my husband was fantasising about other people stealing things I found it best to ignore those accusations, and a bit later start on some thread of my own, involving the heroic efforts the " criminal" was making to find the real culprit! If I persevered enough, my husband would eventually be going along with my version...." How nice of Simon to try and find out who's taken your model railway trains.He's trying really hard" etc etc." Tomorrow he's going to ask at the police station in case any have been found" "he's really cross to think anyone would take anything of yours" etc etc.

Perhaps that would help, I don't know.
 
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Rageddy Anne

Registered User
Feb 21, 2013
5,984
Cotswolds
An mac, so sorry your're getting those awful feelings of fatigue, not really surprising after your heroic time of caring for your challenging MIL's unusually challenging dementia. The Olympics aren't just sporting.....you've been running one long caring marathon! I hope you can get some proper rest.

When I asked my GP why I was still so tired six weeks after my husband went for respite, he said I would feel more tired before I eventually started to feel better. It's been a very long time, he said. You mustn't expect to feel better in a short time.
 

jugglingmum

Registered User
Jan 5, 2014
5,504
Chester
Still trying to get round to posting all my updates, Jason Kenny's fault I didn't get on last night.

Just wanted to post I am going to a funeral today of a dementia sufferer. He had a serious bike accident over 20 years ago fracturing his spinal cord, and losing the use of his legs, and only partial use of his arms so has been wheelchair bound since then. He was on his way to work at the time of the accident, due to take early retirement at the end of that week, his wife cared for him at home for many years, hoisting and turning him in the might, but when dementia set in, he forgot he could no longer walk, and she couldn't cope any more, and struggled with visiting him. Guessing he was late 70s. There is a bike procession, as normal, ahead of the cortege, but I can't get out of work in time for that.
 

Grace L

Registered User
Jun 14, 2014
647
NW UK
Hello, Still here, not gone in for my knee Op yet...


AnnM,
I spent years feeling drained, running on empty, and sleep deprived when I was looking after my husband.
I described it to my GP it was like having permanent 'long-haul jet lag', I felt trapped having no way out.

When my GP did a full blood check, my Vitamin D was really low, and I had to take extra strength tabs for several months.


Recently, I'm feeling soooo tired all over again, and I'm not even seeing MiL on a daily basis.

And to those who asked, No , I'm not being reimbursed for any of the things I buy for MiL.
I can afford it ... well that's what I tell myself. Its only for groceries £20 here and there.
I suppose when you add it up over the year it is a lot of money, especially as it is most weeks.

I trust my niece 100% with the money I've given her. She will continue to get MiL her weekly treats.
She knows to avoid buying cakes as MiL will eat the lot. She's been known to eat a box of Mr.K cakes in a day.
My niece knows how to 'distract Granny', and empty the fridge of rotting food , and replace with fresh.:)

ALL of my in laws (MiLs sons and daughters) know I do this, and have never once given me money,
or offered to buy xyz. If they went shopping for their mum they would ask her for money.


Hmmm... SiL asking her Alz Mum for money, I'm lost for words ... that are not swear words.
MiL gave (not a loan) her daughter some money for her last car. Long time before Alz diagnosis.
At the time, SiL was single, no boyfriend. She got her way £££ and never looked back.
She does not really need a new (second hand) car. Boyfriends mum and dad refused to lend them money.
I don't think MiL has handed over any money, but if she does, I will report it.


Hello to the new people on TP. xxxx I'll try and catch up with the rest of you later xxxx
 

Spamar

Registered User
Oct 5, 2013
7,030
Suffolk
I watched JK last night as well. I felt I'd been through the wringer, heaven only knows how the competitors felt. Obviously Jason could deal with it!
 

Slugsta

Registered User
Aug 25, 2015
2,762
South coast of England
(((JM))) I hope that the funeral goes as well as these things can.

I hear you all, all you lovely people who have depleted your own stores of energy - and sometimes of hope - in caring for others. A 'few' years of that can take a very long time to recover from. I won't say 'get back to normal' as, just as with pregnancy and childbirth, there will be a new 'normal' eventually.I am sorry that the 'system' is so weighted against you and there is so little help, support or appreciation available.

We took Mum for her routine blood test today (thyroid and stroke), then out for her usual hot choccy and cake. The wardens said that Mum refused her meal on Monday evening and Mum said she did not think she would want anything tonight after a big snack when we were out. Mum loves her snacks so much, I don't want to deprive her of them - but I don't really want her to have these rather than eating a proper meal. Or does it really matter at her age?

I have heard back from only one of the care agencies I emailed. They cannot take on any new clients at the moment as they don't have spare staff. Do you think the Memory Clinic might be able to do anything to help?
 

Amy in the US

Registered User
Feb 28, 2015
4,619
USA
JugglingMum, hope the funeral went as well as possible. I know it's always hard to lose a member of your community/family.

Grace, I do hope you will look after yourself. I know it's none of my business and you've not asked my opinion, and I do not wish to be rude, but I hope you will spend more of your time, energy, and money taking care of yourself. I will just say that £20 per week is over a thousand pounds per year...assuming my multiplication is correct--maths not being my strongest subject, possibly not a safe assumption! Do please take good care.

Slugsta, no chocolate spills today, one hopes?

I have no suggestions regarding the care agencies, other than to pester every single one within shouting distance, via email and telephone, until you hear from them, and you already knew that. It certainly couldn't hurt to ask the Memory Clinic. Might the GP's office or a local carer's cafe/support group also have some references for you? Or Age UK?

I hear you on wanting your mum to eat a proper meal, but as you say, it may not be as important that she gets nutritious calories, as long as she is getting calories. I wonder if she would be more receptive to an evening meal that is lighter, or more like a snack or finger foods, than a full meal? Just a thought.

The staff at my mother's care home have asked if I am concerned that she continues to put on weight. Given that she was dreadfully underweight and malnourished from living on her own when she went into the home, why, no, I'm not concerned at all. Let her eat all the ice cream she wants, while she can still take pleasure from it, is my philosophy! Although this reminds me that she needs new trousers again--it's a lot of ice cream. Thank goodness we don't have to worry about diabetes or her teeth. The former doesn't run in her family and the latter are already false! Small blessings.

Bagpuss, I've replied on your other thread but best wishes to you.
 

jugglingmum

Registered User
Jan 5, 2014
5,504
Chester
Funeral went well, little hiccup with the bike ride of honour. Much of it was about his pre spinal cord injury life, although he still managed to ski with his spinal cord injury. Funny how odd details touch you at funerals, his father was killed in the Normandy landings, which touched everyone.

As I left someone was telling his wife to go out and live her life now, I could see she didn't feel comfortable with this, so said she needs to take it slowly.

Dau back from cycling camp this evening, and I'm taking her and 2 friends to Porthmadog tomorrow (4 hours driving with 3 15 year old excitable girls for 2 of them). they are staying with another friend and her parents and another dad is bringing the 3 back on Saturday.

With work and trying to get all washing from hols done I've been non stop these 3 days (oh and TV for Olympics - great women's hockey tonight).

Hopefully visit mum after holiday tomorrow. When I told her we were off to France she asked if I'd been to France before, which made me sad, as last year she asked if we were cycling as normal. Many childhood summer holidays spent in France as well. Dau bought and wrote a lot of postcards whilst we were in France for mum. Decided not to post as she will enjoy just as much getting them and will re read many times.
 

Ann Mac

Registered User
Oct 17, 2013
3,693
Hello everyone,

I'm so sorry to hear about the loss of your cycling friend, JM, but glad the funeral went well, despite the little hiccup. I feel for his wife, being advised to 'go out and live her life now' - you only have to look at a lot of the posts on here, from husbands and wives who have lost their spouses after years of caring, to know that it just isn't that easy - I hope what you said to her, about taking it slowly, is listened to and helps her xxx Hope your dau and her friends enjoy Porthmadog - its a really pretty area, we often head in that direction in Old Red :)

Amy, when we started to empty Mil's house, we were also stunned by the amount of 'stuff' she had accumalated! She had been really reluctant to let us go anywhere but downstairs and the bathroom in her house, in the 18 months before she moved in with us, and the 3 bedroom doors had always been firmly shut when we visited. We got a shock when we finally went into those rooms, because they were packed solid with an odd assortment of 'stuff' - we honestly didn't know where to start to sort it! Mil had clearly spent a lot of time in charity shops - and also watching and buying from all the TV shopping channels. Piles of second hand handbags, bin bags full of china dolls, carrier bags full of batteries, wardrobes filled with the most peculiar mixture of clothes - an awful lot of T shirts in a variety of sizes, featuring everything from boy bands to some very rude slogans! - and things like mulitple packs of garden solar lights, brand new steam and vaccuum cleaners (mostly with the accessory bits missing) and lots and lots of curtains and cushion covers. She was there when we went through some of the stuff when emptying the house, and she had no recollection of even buying the majority of the things we came across - she must have spent a small fortune, especially on the things bought from shopping channels :(

I also get the dilemma with food for you and Slugsta. Mil - as I'm sure you have realised - loves her food, especially anything sweet. I would have loved to indulge her in her sweet tooth, because goodness knows, little else brings her any pleasure, but she has other health issues that meant I couldn't. Hoping I can word this in a way that doesn't sound callous - it wasn't that I worried about excess weight or a cake-based diet shortening her life, that aspect really didn't bother me, I would rather short and sweet than long drawn out and unhappy, IYKWIM. The issue for me was that the pleasure she got from the food was more than out-weighed by the pain and discomfort she then had to deal with as a result of weight gain, because of her arthritis and because her breathing (she has COPD) was made so much worse by her being over-weight, and it would cause her a lot of distress. I was also worried about my ability to continue helping her with personal care, if she got to be too heavy, if I'm honest. And she also has diabetes - knowing the painful and horrible conditions that can develop from that, if her diet wasn't watched, was another reason to be careful with what she ate. But if she hadn't had those illnesses, you can bet your bottom dollar that I would have gone along the route of 'have what you want to eat'.

Slugsta, hope you can find a local agency that can accomodate your Mum's needs. Its just disgusting that you are having to do 'the leg work' to try and sort this. Its a bliddy stupid system where Social services can interpret legislation to mean that whilst they have 'legal' obligation to identify the needs of people with dementia, and their carers, there isn't actually a legal obligation for them to provide the facilties/service to meet those needs. We found that out when it came to getting respite. As long as they identified the needs and services required, as long as they met any costs that the service user is entitled to - well, that's the end of their legal obligations. They didn't have to provide a respite bed, just like I suspect that they will argue that they don't have to provide a home care service for your Mum - if there isn't one available, well, its not their responisbility. Its a wonderful get out for them :mad:

Hi Dad's carer :) I know compassionate communication, if it works for the individual, is obviously the ideal way to respond to some of the deluded notions that our loved ones experience, but I'm with Red and R-Anne on this one. There are definitely some things that you absolutely cannot go along with. I - like others - have found that in some instances, 'going along' with certain notions simply fuels the delusion and actually leads to more upset for both the carer and the pwd, sadly. They can become 'fixations' that are returned to, time and time again and cause such misery for all. Mil's delusions often revolved around supposed wrongs done to her by specific people in her life, and she could be utterly vicious and nasty, and get herself extremely worked up if these delusions were in any way encouraged by you agreeing with her. The worst one, which I've talked about a lot, was her mistaken conviction that her son was actually her husband and that I must therefore be the 'other woman'. There was absolutely no way that we could go along with that one - it led to really innapropriate behaviour and comments from Mil, and it led to her being absolutely foul with me, and with her son. I'm afraid that against all the 'compassionate communication' advice, we corrected her as soon as that one was mentioned, and the only thing we found that worked (though not always) was to tell her to go to her room and calm down. Sometimes removing her from the immediate environment was enough to distract her from that delusion, but even if it didn't, without any 'feedback' or 'response', it was harder for her to get worked up to the point of melt down. With other paranoid delusions - such as one of us stealing from her, or her accusing one of us of physically hurting her - we would try distraction - "Oh, I'm sorry you feel like that. Shall I go and make you a cup of tea and we'll have a chat?' - but if that didn't work, the priority was always to stop her getting worked up to the point where she might injure herself (banging on doors and windows, or falling because agitation made her mobility and balance worse) or gave herself an asthma or angina attack. So again, we would ask her to leave the room. It was a horrible thing to do, but in our experience, it was the lesser of the evils on offer in a situation like that :(

Thanks to all of you for the kind wishes and support - as always, you guys make a heck of a difference to me xxxx

I went to the GP appointment yesterday, with not a clue about what I was going to say, that wouldn't make me sound (and feel) like a complete wuss. It turns out that my lovely GP had been more or less expecting me to show up, and to be feeling like this. I spent a lot of the appointment trying not to bawl like a baby, as what he said felt so spot on about how I feel and it was just a relief that he was able to put it into words far better than I could. He has been in a similar situation, it turns out, as he lost his Father to dementia, and he and his Mum had also had to reluctantly accept that residential care was the only option. He made a point of saying that his Dad hadn't suffered from the extremes of behaviour and paranoia that Mil does, and that he was amazed that we hadn't agreed to residential care as long as 18 months or more ago for Mil. He talked about grieving and how my reactions were natural and understandable. But he expressed concern at me taking on the new job, though he accepted that lifting the financial worries would help me feel better and could see why I want/need to work. He was refreshingly blunt about exactly what caring for someone with dementia entails, about what you encounter and what impact it has on a carer. He understood, and as I think Amy said, it heps to have the validation, the assurance that dealing with it, and the after effects, is pretty tough for anyone, that no one comes out of it unscathed. Counselling has a long, long waiting list, so he has prescribed medication, which he wants me to take for approximately 4 - 6 months. To help me sleep - because he feels that the insominia is having a really detrimental impact - and to 'take the edge off' the awful down feelings, as otherwise, he thinks I will really struggle with work. I was reluctant, I've never taken anything stronger than an occasional sleeping pill, and not even that for years and years, but what he said made sense and he has promised that it won't be for long and that it will help. I have to return to see him, in 5-6 weeks time, to see to what extent the medication has helped. He is certain it will have done, and - obviously recognising how reluctant I was - he made me promise to stick with it, until I see him next, as it can take 3 - 4 weeks to start having an effect. He's made me hopeful that it will help, and that I will be able to shake off the way I feel, without relying on meds long term.

I spent the rest of yesterday working on the wedding pics, and have finished them - with a huge sense of relief. I usually love weddings, but although the couple were lovely, and they and their guests just couldn't have been nicer, this one has been a real slog (oddly, the GP asked specifically about 'was I enjoying' my usual photography work, and wasn't surprised at me saying about how I was suddenly finding it hard). I didn't visit Mil - I went on Tuesday, before my physio appointment, and warned the staff that I may not be in for a few days, due to the physio and us possibly going away this weekend. Thankfully, the staff I spoke to didn't give off any disaproving vibes - though to be honest, if he had, I just might have blasted him, so it was just as well! I found Mil very much in her 'Come on - isn't it time we were going? You did say you would give me a lift home, didn't you?' loop. And all mixed up between being in school and being in work, talking about the 'supervisor', who morphed into the 'head mistress' midway through several of her confabulations. She is still amazingly fluent, one of the staff nurses said to me one day a week or so back that Mil's abiltiy to talk is awfully hard to reconcile with how impaired she now is by the dementia, and that it can make communicating with her, reassuring her when she is upset, extremly difficult. Its hard to find the appropriate things to say, to judge what she she does and doesn't understand when her volcabulary and speech present so well, and yet her comprehension is so poor and her logic so flawed. I'm glad it isn't just OH and I that struggle with that aspect. Mil was quite forceful in her determination to leave when I did, and in the end, I more or less ordered her to stay where she was, telling her she couldn't leave till she had permission from the doctor - to which she responded, suddenly (but thankfully) with 'Yes, you're right - I forgot I had to wait for the teachers to say I can go', and I made my escape.

Wedding pics done, I have no big plans for today - need a couple of bits of shopping, have a tiny bit of ironing (that can wait, if it needs to) and just the usual bits and bobs to do in the house. We're swithering on whether or not to go away this weekend, as the forecast for Friday and Saturday is miserble - OH is supposed to be off on Monday, so we had thought we would go late Sat afternoon, and get back late Monday - however, just found out that he has been booked into a training course, Monday afternoon, so we will have to be back for that, which is a pain. I guess we will just have to keep an eye, and hope the forecast changes for the better!

Hope you all have a good day xxx
 

Grace L

Registered User
Jun 14, 2014
647
NW UK
Morning All,

JM , sorry from me too. xxx

Amy, Yes, I know £1000 ++ other bits I buy for MiL. I could do a lot with that money.
I'm not alone, there must be thousands of 'us carers' that spend a £20 here and there on their loved ones.
£1000 would pay a lot towards my Council Tax, or pay for other bills.

Husband was the eldest, we have always bought his mum things.
Sometimes small things, sometimes large items like a washing machine, she has always been looked after.
We were never rich/ wealthy, but managed to treat his mum to a lot of things.


Next year will be all about 'looking after' me.
My knee op will be out of the way, and I will be able to finally think about moving.

I don't want my niece to have to worry about having to go shopping for Granny every week.
She loves her Granny, but I don't want her to feel like she has to take over when I'm gone.
MiL has 2 sons that live in the same town (and daughters in law), and other niece ++
They don't like, cant cope with Alz Granny, avoid her if they can... head in sand.
I'm almost certain they are still thinking MiL will move I with me. NO SHE IS NOT !!


Amy, my MiL had loads of 'stuff' too. A lot of charity shop finds.
I've managed to get rid of some, store some things in her garage, in stacking plastic containers.
At one time you could hardly sit on her sofa without a pile of toys falling on you.
OOoo and some of them were really ugly, not nice at all. Dirty, broken toys, dolls missing limbs, eyes ....
And for a while lots and lots of blankets , throws, cushions, and lots of books .

If you question MiL about the toys, she says they are for 'the children'...
My nieces and nephews are all older, and my nieces children would not want to play with the toys.

MiL says she has 'some children' who knock on her door, come to play, and sometimes sit and
watch her from the top of the bookcase. If they are naughty she shouts at them to leave.
I've not witnessed MiL talking to 'the children' , but BiL/SiL have, and couldn't cope.
SiL had to leave and was in tears, and when I rang and asked her , she refused to talk about the event.


AnnM... hope the medication works from the GP. I'm glad you were able to talk to him.


Take care everyone xxxx
 

angelface

Registered User
Oct 8, 2011
1,086
london
So glad you have a gp who listens.

Hope the pills work . Are there any charities who are able to help with counselling? I was lucky to access it through a local carers assiciation.

Keep on with that resting ☺
 

Slugsta

Registered User
Aug 25, 2015
2,762
South coast of England
Morning all,

Ann, I'm so glad that your GP listened and understood. Please try not to worry about taking the tablets, it really will be worth it if they stop you from sinking deeper into a black hole.

JM, I'm glad that the funeral mostly went well.

Grace, it sounds high time you started looking after yourself! I'm sorry, I don't remember the date of your op :eek:

I had a call from the SW yesterday (Thursday) morning to say that Mum's care package has been sorted and the first visit will be on Monday morning :) I want to be there for the first visit, which will mean cancelling my aquagym sessions. However, I think it will be worth it if it helps make sure it goes smoothly. One thing I am mithering about is how the carer will get into the building. There are call buttons by the front door and the resident has to let the caller in. This will be fine if Mum is in her own flat, or even if she is with her friend, but won't be of any help if Mum is wandering the corridors. I will have to speak to the wardens and see what they suggest. There is a key safe for Mum's flat, so it will be OK once the carer is in the building.

And now I can't sleep :rolleyes: It happens occasionally, sometimes for a few nights running, but I don't worry so much about it now that I don't work. I can catch up on sleep during the day if I need to :)

It has still been very warm here but that is due to change today - just in time for the airshow!
 

Slugsta

Registered User
Aug 25, 2015
2,762
South coast of England
I spoke to the staff where Mum lives today and solved the mystery of the carers getting into the building. Haven't told Mum yet, will say something when I go over to give her dinner on Sunday afternoon.

Amy, you are probably correct, there's not much I would put beyond Grace's in-laws! :mad:
 

jknight

Registered User
Oct 23, 2015
786
Hampshire
Hello everyone,

I'm so sorry to hear about the loss of your cycling friend, JM, but glad the funeral went well, despite the little hiccup. I feel for his wife, being advised to 'go out and live her life now' - you only have to look at a lot of the posts on here, from husbands and wives who have lost their spouses after years of caring, to know that it just isn't that easy - I hope what you said to her, about taking it slowly, is listened to and helps her xxx Hope your dau and her friends enjoy Porthmadog - its a really pretty area, we often head in that direction in Old Red :)

Amy, when we started to empty Mil's house, we were also stunned by the amount of 'stuff' she had accumalated! She had been really reluctant to let us go anywhere but downstairs and the bathroom in her house, in the 18 months before she moved in with us, and the 3 bedroom doors had always been firmly shut when we visited. We got a shock when we finally went into those rooms, because they were packed solid with an odd assortment of 'stuff' - we honestly didn't know where to start to sort it! Mil had clearly spent a lot of time in charity shops - and also watching and buying from all the TV shopping channels. Piles of second hand handbags, bin bags full of china dolls, carrier bags full of batteries, wardrobes filled with the most peculiar mixture of clothes - an awful lot of T shirts in a variety of sizes, featuring everything from boy bands to some very rude slogans! - and things like mulitple packs of garden solar lights, brand new steam and vaccuum cleaners (mostly with the accessory bits missing) and lots and lots of curtains and cushion covers. She was there when we went through some of the stuff when emptying the house, and she had no recollection of even buying the majority of the things we came across - she must have spent a small fortune, especially on the things bought from shopping channels :(

I also get the dilemma with food for you and Slugsta. Mil - as I'm sure you have realised - loves her food, especially anything sweet. I would have loved to indulge her in her sweet tooth, because goodness knows, little else brings her any pleasure, but she has other health issues that meant I couldn't. Hoping I can word this in a way that doesn't sound callous - it wasn't that I worried about excess weight or a cake-based diet shortening her life, that aspect really didn't bother me, I would rather short and sweet than long drawn out and unhappy, IYKWIM. The issue for me was that the pleasure she got from the food was more than out-weighed by the pain and discomfort she then had to deal with as a result of weight gain, because of her arthritis and because her breathing (she has COPD) was made so much worse by her being over-weight, and it would cause her a lot of distress. I was also worried about my ability to continue helping her with personal care, if she got to be too heavy, if I'm honest. And she also has diabetes - knowing the painful and horrible conditions that can develop from that, if her diet wasn't watched, was another reason to be careful with what she ate. But if she hadn't had those illnesses, you can bet your bottom dollar that I would have gone along the route of 'have what you want to eat'.

Slugsta, hope you can find a local agency that can accomodate your Mum's needs. Its just disgusting that you are having to do 'the leg work' to try and sort this. Its a bliddy stupid system where Social services can interpret legislation to mean that whilst they have 'legal' obligation to identify the needs of people with dementia, and their carers, there isn't actually a legal obligation for them to provide the facilties/service to meet those needs. We found that out when it came to getting respite. As long as they identified the needs and services required, as long as they met any costs that the service user is entitled to - well, that's the end of their legal obligations. They didn't have to provide a respite bed, just like I suspect that they will argue that they don't have to provide a home care service for your Mum - if there isn't one available, well, its not their responisbility. Its a wonderful get out for them :mad:

Hi Dad's carer :) I know compassionate communication, if it works for the individual, is obviously the ideal way to respond to some of the deluded notions that our loved ones experience, but I'm with Red and R-Anne on this one. There are definitely some things that you absolutely cannot go along with. I - like others - have found that in some instances, 'going along' with certain notions simply fuels the delusion and actually leads to more upset for both the carer and the pwd, sadly. They can become 'fixations' that are returned to, time and time again and cause such misery for all. Mil's delusions often revolved around supposed wrongs done to her by specific people in her life, and she could be utterly vicious and nasty, and get herself extremely worked up if these delusions were in any way encouraged by you agreeing with her. The worst one, which I've talked about a lot, was her mistaken conviction that her son was actually her husband and that I must therefore be the 'other woman'. There was absolutely no way that we could go along with that one - it led to really innapropriate behaviour and comments from Mil, and it led to her being absolutely foul with me, and with her son. I'm afraid that against all the 'compassionate communication' advice, we corrected her as soon as that one was mentioned, and the only thing we found that worked (though not always) was to tell her to go to her room and calm down. Sometimes removing her from the immediate environment was enough to distract her from that delusion, but even if it didn't, without any 'feedback' or 'response', it was harder for her to get worked up to the point of melt down. With other paranoid delusions - such as one of us stealing from her, or her accusing one of us of physically hurting her - we would try distraction - "Oh, I'm sorry you feel like that. Shall I go and make you a cup of tea and we'll have a chat?' - but if that didn't work, the priority was always to stop her getting worked up to the point where she might injure herself (banging on doors and windows, or falling because agitation made her mobility and balance worse) or gave herself an asthma or angina attack. So again, we would ask her to leave the room. It was a horrible thing to do, but in our experience, it was the lesser of the evils on offer in a situation like that :(

Thanks to all of you for the kind wishes and support - as always, you guys make a heck of a difference to me xxxx

I went to the GP appointment yesterday, with not a clue about what I was going to say, that wouldn't make me sound (and feel) like a complete wuss. It turns out that my lovely GP had been more or less expecting me to show up, and to be feeling like this. I spent a lot of the appointment trying not to bawl like a baby, as what he said felt so spot on about how I feel and it was just a relief that he was able to put it into words far better than I could. He has been in a similar situation, it turns out, as he lost his Father to dementia, and he and his Mum had also had to reluctantly accept that residential care was the only option. He made a point of saying that his Dad hadn't suffered from the extremes of behaviour and paranoia that Mil does, and that he was amazed that we hadn't agreed to residential care as long as 18 months or more ago for Mil. He talked about grieving and how my reactions were natural and understandable. But he expressed concern at me taking on the new job, though he accepted that lifting the financial worries would help me feel better and could see why I want/need to work. He was refreshingly blunt about exactly what caring for someone with dementia entails, about what you encounter and what impact it has on a carer. He understood, and as I think Amy said, it heps to have the validation, the assurance that dealing with it, and the after effects, is pretty tough for anyone, that no one comes out of it unscathed. Counselling has a long, long waiting list, so he has prescribed medication, which he wants me to take for approximately 4 - 6 months. To help me sleep - because he feels that the insominia is having a really detrimental impact - and to 'take the edge off' the awful down feelings, as otherwise, he thinks I will really struggle with work. I was reluctant, I've never taken anything stronger than an occasional sleeping pill, and not even that for years and years, but what he said made sense and he has promised that it won't be for long and that it will help. I have to return to see him, in 5-6 weeks time, to see to what extent the medication has helped. He is certain it will have done, and - obviously recognising how reluctant I was - he made me promise to stick with it, until I see him next, as it can take 3 - 4 weeks to start having an effect. He's made me hopeful that it will help, and that I will be able to shake off the way I feel, without relying on meds long term.

I spent the rest of yesterday working on the wedding pics, and have finished them - with a huge sense of relief. I usually love weddings, but although the couple were lovely, and they and their guests just couldn't have been nicer, this one has been a real slog (oddly, the GP asked specifically about 'was I enjoying' my usual photography work, and wasn't surprised at me saying about how I was suddenly finding it hard). I didn't visit Mil - I went on Tuesday, before my physio appointment, and warned the staff that I may not be in for a few days, due to the physio and us possibly going away this weekend. Thankfully, the staff I spoke to didn't give off any disaproving vibes - though to be honest, if he had, I just might have blasted him, so it was just as well! I found Mil very much in her 'Come on - isn't it time we were going? You did say you would give me a lift home, didn't you?' loop. And all mixed up between being in school and being in work, talking about the 'supervisor', who morphed into the 'head mistress' midway through several of her confabulations. She is still amazingly fluent, one of the staff nurses said to me one day a week or so back that Mil's abiltiy to talk is awfully hard to reconcile with how impaired she now is by the dementia, and that it can make communicating with her, reassuring her when she is upset, extremly difficult. Its hard to find the appropriate things to say, to judge what she she does and doesn't understand when her volcabulary and speech present so well, and yet her comprehension is so poor and her logic so flawed. I'm glad it isn't just OH and I that struggle with that aspect. Mil was quite forceful in her determination to leave when I did, and in the end, I more or less ordered her to stay where she was, telling her she couldn't leave till she had permission from the doctor - to which she responded, suddenly (but thankfully) with 'Yes, you're right - I forgot I had to wait for the teachers to say I can go', and I made my escape.

Wedding pics done, I have no big plans for today - need a couple of bits of shopping, have a tiny bit of ironing (that can wait, if it needs to) and just the usual bits and bobs to do in the house. We're swithering on whether or not to go away this weekend, as the forecast for Friday and Saturday is miserble - OH is supposed to be off on Monday, so we had thought we would go late Sat afternoon, and get back late Monday - however, just found out that he has been booked into a training course, Monday afternoon, so we will have to be back for that, which is a pain. I guess we will just have to keep an eye, and hope the forecast changes for the better!

Hope you all have a good day xxx

Hi Ann,

My DH has been on anti depressants for years (don't be scared by that, his situation is very different to yours) They really do help.
You have been dealing with so much for so long. Take all the help on offer!

Love

Jenny
 

Ann Mac

Registered User
Oct 17, 2013
3,693
Hello everyone :)

Grace, as Slugsta says, I wouldn't put much beyond your out-laws, so not surprised you are keeping quiet over the op date - whenever it is (and for your sake, I hope soon!) hope it goes well. I understand totally where you are coming from with the 'treating' Mil, and not wanting to see her without things she needs, but what's going to happen when you move away? It sounds unlikely that her own sons/family will step in - but you will, I'm sure, have enough expenses with moving without having to continue to support her in this way? I used to hate it when the SW used to tell me, when we expressed concerns about Mil living in her own home, that there would have to be a 'crisis' before SS would step in and I guess, insist on her having support - but you know, I think its going to take some sort of crisis before your Mil's family will take their heads out of the sand and realise that they have to do something. I just hope, when it happens, that you have moved far away and they won't put pressure on you to come running to the rescue - its not only not fair on you, its not fair on your Mil either x

Slugsta, I am so glad that they have a care package sorted for you Mum, and I'm glad you have solved the puzzle of how to get the carers into the building :) I really hope the first visit goes well and sets the tone for the carers coming in long term, because it will be such a relief to you, I'm sure :) I sympathise with the insominia - 6 hours is a good long sleep for me these days, but its usually more like 4 - 5 hours maximum that I manage. No idea why, I've been an early bird for years, since the kids started to arrive I guess, but over the years I've started waking earlier and earlier, sometimes I'm up and about at around 4a.m. these days!

Thanks Jenny x That's reassuring - I'm hoping that once Mil is settled in the care home, and I start the new job, things wil be brighter anyway, and I can hopefully stop the medication - the GP described it as something to just give me a 'boost', and goodness knows I could do with it - well, either that or a kick up the backside to shake me up a bit, lol xxxx

Thanks Sue, too xxx

Went to visit Mil yesterday, a quite distressing visit :( The gunmen were back, and Mil was so frightened. Horrible to see. She was soaked in sweat, trembling, quite breathy and very tearful. Greeted us with a lot of agitation because she couldn't 'get everyone gathered up' , she 'needed' to get everyone together for 'safety'. It was her responsibility, she said, because she was 'over' everyone else and she needed to get them all 'out of here'. She clung to OH, who guided her to a quiet group of seats in the communal area, and we tried to reassure and talk her down - well, I say 'we', it was mainly OH - the more agitated she is, I've noticed that the more she tends to focus on OH and will only occasionally address me - I think when she is that upset, she clings because he must be the most 'familiar face' to her, poor thing. OH really tried to distract her, but a little like last week when I could do nothing to get her off the subject of the 'war' she was convinced was going on, she kept bringing the topic back round to these men with guns that were going to kill her and 'the others' yesterday. The big difference was the awful level of upset she was clearly feeling. One of the 'activity' staff was going off duty and came to say goodbye to Mil - and as soon as she went, Mil was panicking about would she be safe, and 'Oh - I hope she doesn't get shot!'. I tried the old trick of assuring her that it was just a 'really horrible dream' and telling her over and over that she was safe - that would occasionally work when she was at home, but it had no effect yesterday - she launched into a tale about 'This young chap' had told her that he had had to shoot and kill someone in self defence, because they were all trying to shoot and kill him - she kept emphasising to me that 'he had to do it, Ann'., that it was 'kill or be killed', and countered my assurances that it was a 'dream' with 'But he told me, I wasn't dreaming . . . '. This all soon led onto 'I'm going home' and the repeated comment that she was catching the 4 o'clock bus (only, with added panic, because she had to get everyone else together so they could 'catch the bus and get out of here' too!). Over and over, OH told her that she would have to wait to 'see the Doctor' - which she would reluctantly agree to, but add 'We should be safe waiting, shouldn't we? They will go to prison if they shoot us, won't they? They'll be locked up?'. He got her making a shopping list of things that he would pick up from the shops for her, ready for when she 'goes home' - that was a little more successful than anything else he tried, but even so, the success was limited as she was still referencing the gunmen and being shot, albeit in a slightly less agitated way, though their were repeated pleas not to 'leave me here by myself'. It was a sharp reminder of just how intense and dreadful it is when she is in the grip of such scary delusions like that. And also a sharp reminder that her behaviour has deteriorated, because at one point OH tried to joke with her that she needed to see 'Dr Doolittle' - and there was a flash of anger and she went to slap him. We stayed for about 45 minutes - longer than we have been able to stay recently, because she often makes it clear that she wants us gone after about 30 minutes - but it was hard work to get out, she was determined again to leave with us and we had to promise that we were just going to 'pick up your shopping and will be back in half an hour' in order to get out of the ward.

When we first arrived, the nurse who let us in had told us that she was agitated and that they had given her some medication, but it didn't seem to be having any impact - he confirmed it was respiredone when I asked. There really doesn't seem to be a medication that helps her when she gets into that state :(

I also walked out of there with two large bags of washing - both Mil's light dresing gowns, assorted night clothes and several tops, two pairs of trousers and 3 bra's. Once again, one of the bags was reeking of urine - was quite annoyed when I got it home and found that amongst the washing were two tops that I haven't seen her wear for weeks, which were still folded as if unworn and the brand new nighty that I took for her just over a week ago, still crisply folded and clearly never worn - but all in need of washing as they had been put in the bag with a sopping wet, wee-sodden nighty, and everything in that bag stank, because despite the offending nighty being wrapped in another bag the smell had transferred to everything. I was only there on Tuesday and had (once again) asked about washing, explaining that I now had none of her trousers at home, and none of her bra's - I was told that there was 'nothing to be washed at the moment' but that the nurse would have a look and see if he could find some of the missing clothes - just two days later, and I'm handed what turned out to be 3 machine loads' worth of washing! Talk about from one extreme to the other!

Yesterday I also had a lot of paperwork through for the new job - still no definite start date (an 'induction' event is being organised) but a very full job description - which I read, then sighed with relief, because I should be able to fulfil all that is required - the DBS paperwork, a medical questionaire and stuff about pensions and life insurance and so on. The pay appears to have gone up, from when it was advertised too, which was an unexpected but rather nice surprise! I really struggled with all the forms and so on - I think after the last 3 years of dealing with Mils stuff, I now have whats close to a flipping phobia about paperwork - but made myself get it done, and felt tons lighter afterwards. I also got the pics finished from the wedding and delivered them - for once, I'd found it a real slog to edit, not like me at all - and without being able to pinpoint why, I wasn't that satisfied with any of the 450-plus shots - but last night the bride contacted me to tell me she absolutely loved them, and again, that made me feel a lot better.

The weekend away is most definitely 'off' - I don't believe that there is a place within our travel radius that is rain free at the moment, with only tomorrow promising better weather - so I think its going to be a cosy takeaway tonight and maybe a day out tomorrow.

Hope you all have a good weekend xxx
 

LadyA

Registered User
Oct 19, 2009
13,558
Ireland
Ann, I really can't understand the washing situation! In William's nursing home, every resident's room had its own laundry bin, kept in a cupboard (so it or its contents wouldn't go walkabout!) . The resident's clothing goes in their laundry bin in their room, and nowhere else! So all I had to do was collect it from the bin, liner bag and all. The only thing that went missing was a cardi that William had obviously taken off somewhere - and that turned up after a couple of days.
 

Slugsta

Registered User
Aug 25, 2015
2,762
South coast of England
Evening all,

Ann, I'm sorry that you have had so much washing to deal with all at once :( and that your weekend away has been kyboshed by the weather :( I hope that you enjoyed your quiet evening with OH.

I am reminded of the time an acquaintance of ours was in hospital and I was dealing with her washing. I was handed a big bag of stuff and I commented that there didn't seem to be a system to keep clean and dirty apart. 'No' said the nurse 'we put all the dirty things into that green bag' I pointed out that this was the bag in which I returned the clean things . . .

It seems that MIL is still getting the awful delusions, it's so sad that they haven't been able to find anything to help when she is like this :(

My friend and her hubby picked me up after lunch so that we could go and watch the airshow. We got there to be told that there was no flying as the wind was too strong. So we had a drink and then went home to play with the cats. Of course it's disappointing but I feel really sorry for the families who came here specifically to see the show. Even then, nothing is worth risking life for. We lost a pilot here several years ago, don't ever want anything like it to happen again!