So bizarre !

Rageddy Anne

Registered User
Feb 21, 2013
5,984
0
Cotswolds
Red, just love your choice of words!!

I actually went out to a concert tonight, first time since last Christmas. It was a jazz one, so a few people up dancing! Another one on a fortnight - John Wilson + orchestra, I'm really really looking forward to that!

Next door have bought a pup, a chihuahua, black, 4 months old. Think she's got all the family wrapped around her paw already! She's not keen on me, too big and scary, I think!

Murray going through a bad patch, just about to lose 2nd set, I believe.

Wasn't that John Wilson orchestra doing Gershwin at the Proms last week? Brilliant!
 

Ann Mac

Registered User
Oct 17, 2013
3,693
0
Morning all,

Chuckling at both Red's wonderfully appropriate (and funny) comments, then at Canary's fab icons :D I did find myself wondering after I put the phone down had I picked up on what was said wrongly? But I really don't think I did - there have been a couple of - well, not so much 'digs', I don't think - but little off-sounding, thoughtless comments like that from one or two staff on the ward (mainly the senior staff, not the hands-on front line nurses and support staff). I wonder if some realise just how hard the guilt monster can poke and prod when you can't visit for a few days, for whatever reason? Really don't need anyone else putting their twopennyworth in!

I think the way you are feeling Amy, is no more than could be expected after such and intense and awful several weeks :( So much to deal with - the sadness at seeing your Fil suffer, then actually losing him. Dealing with your Mil's behaviour, and the very natural resentment and misery that must have caused - and all the while, still knocking yourself out to give every bit of practical help you could. No wonder you still feel so stressed and torn and exhausted! I'm another one who would be saying 'stuff the turkey' and heading to that beach. Good idea, whatever you decide, to warn Mil & co asap that you have your own plans, and I'd be making it clear that they can't be changed! We have talked about Christmas here - albeit breifly - and are hoping that Mil will be settled in residential by then (though its by no means certain - it's really horrible, but as OH says, we are basically waiting for someone to die so that Mil gets a place in the home of our choice!) and have decided that we are not going to risk bringing her to us for the day, and instead will visit for a couple of hours on Christmas morning. We would love to have her here - she has spent all but 2 of the last 26 Christmasses with us, it going to be odd her not being here - but with the 'home fixation and paranoia as strong as it ever was, not only is it going to be horrible for us dealing with that, but we think bringing her back here would add to her confusion and make her worse :( It might make us feel like we have 'done the right thing' if we brought her here - but in this instance what feels 'right' might not actually be 'best', IYKWIM.

Welcome back JM - glad you had a good time :) Hope you got the kids off to scouts and camp with not too much hassle - would imagine you were absolutely shattered after the journey!

Grace - another one hoping that everything is going well with the planned op, hun and that you are OK?

Glad you enjoyed the concert, Spamar - jazz isn't my thing, despite having worked (many, many years ago) at The Bulls Head at Barns (Modern Jazz venue) - but I do love live music, though I rarely get the chance to go and see any these days.

The cold is all gone - woke up yesterday, sniffle and sneeze free - so went ot see Mil last night, with OH. We just never know what we are walking into when we go to see her, last night not too much upset, but a lot of repeated loops of 'Are you not taking me home? I thought you were? Come on, time we were going home now'. She really has no idea where she is - but oddly, that doesn't seem to particularly upset her. You would imagine that feeling to be at least rather disorientating and perhaps a bit scary, wouldn't you? But although she asked what 'this place' was a couple of times, she seemd almost 'detached' from the answer, expressing nothing more than mild surprise when we told her she was in hospital. She was quite fixed on a small Sesame Street talking toy that was lying around the ward, insisting that it belonged to our daughter, that she had bought it for her and in between that there was puzzlement over where her 'S***' was - though she was quite clear that OH was her son and that he was also called 'S***', she wondered several times where the 'other one was'. And an intense 10 minutes when she asked OH his age and when he replied, she would say 'That's right - because I'm 41' (making her several years younger than her own son) - but then, she would seem to realise that there was something 'wrong' about that idea, although she really couldn't work out what exactly was 'wrong' about it - one of those 'can't connect the dot's' type scenario's. We eventually tried to explain, but all that led to was her saying - 'Well, I can't be 41 then, can I? So I must be 37 !'. The usual wildly confabulated accounts of what she had been up to - she had, she said, been 'travelling up and down the country, all week' which seagued off into a surprising comment about how she hadn't been 'deep sea diving' afterall - it turned out that she had 'only had to swim in a river'. As she can't swim at all, in reality, neither OH nor I had any idea where that one came from. And after about 40 minutes, she was clearly starting to struggle, restless and full of the queries about didn't we have to be somewhere ?, and wasn't it time she went too?, and for the second visit running, when OH asked her if she wanted us to leave, she said 'Yes'.

The cold may be all gone, but OH collard me for a 'talk' yesterday. He says he is worried about how 'low' I seem to be, telling me that I am really not 'myself'. He's worried about my lack of confidence and how 'dragged down' I am. He's concerned about me not sleeping well and described me as being 'defeated'. He had hoped that me getting the job would boost me up, but now he's more worried about how I am going to cope with all the stress and strains of returning to work, because its as though all the 'stress and strain' of the last several years has suddenly caught up with me. I knew that I was feeling down, but hadn't realised how obvious it was to others - so (admittedly reluctantly) I've agreed to make a GP appointment today. Not that I have any idea what I'm going to say to him. It feels wimpish that now, when the hands on care is over, that I have suddenly crashed. But no matter how many lectures I have given myself, no matter how much I tell myself that this is silly, I really can't shake off how I feel. I'm pleased about the job, I'm happy that oldest is settled somewhere really nice, I can see that we can now get ourselves back to some sort of 'normal' - but its all 'surface' pleased and glad and relieved and doesn't seem to touch the deep down feelings. And I feel so stupid that only now do I feel that I am really, really struggling. So, I'll phone, and I'll go to an appointment if I can get one - but I have no real idea about what the GP can do that might help :(

Have a good day, everyone xxxx
 

RedLou

Registered User
Jul 30, 2014
1,161
0
I'm popping in once a day atm just to check how you all are, and reading Ann and Amy's posts, I recognise some of where I was in similar circumstances. It is perfectly natural to feel 'down'/'spent'/'running on empty'. This is where the 'take care of yourself' cliche really must be paid heed to. I don't know whether GPs can help, though not a bad idea to check out, but you simply must listen to the inner voice telling you to take time out in whatever way helps. --The thing eventually that helped me was making a forward plan I really wanted to do (OU degree) but I did that at my own pace and you have had the job come quicker than you expected, Ann. The other thing that helped me was booking a holiday. (Hence why I'm encouraging Amy.) Is there any way you can get away properly Ann - I'm not talking Old Red either - I'm talking hotel, someone else cooking, no responsibilities whatsoever. Or go for a massage, or acupuncture??
And talk it out here. You can tell us endlessly how you feel. I know all you nice people sometimes think you shouldn't say too much 'down' stuff, but it takes time to get over dementia and the same emotions keep cropping up over and over.
Re Christmas/thanksgiving -- again, a bit of personal experience and it is 'trust your instincts, Luke.' (Said in my best Jedi-master voice.) My story: brother said he would do Christmas (2014) to give me a rest (bless him). I suggested he spend time with Dad during the day at the hospital but take himself, his daughter and his partner out to lunch and I'd pay from Dad's money, 'as it's your Christmas, too.' --In the event, brother decided to take Dad out of hospital to the restaurant with them. From what I gather, Dad found the long meal (hours and about 7 courses) a bit of an ordeal and two days later got a bowel bleed that led to another deterioration and ensured he lost his place at the very nice new dementia CH he was due to be discharged to. (I've never said any of this to my brother but instead denied flatly the bleed was related to the rich meal and wine for obvious guilt monster reasons.) So I'm sure you're both right about Christmas/Thanksgiving. You may be sensing not only what you need, but what your relatives can cope with/privately want.
--For someone who was bailing out, I seem to be prattling on a lot here! Forgive me - it's weird how much you can care about people you've never met. I always refer to you guys as my TP friends when OH asks me what I'm tapping away on my keyboard. eg 'I'm just saying something to my friends on TP.' *hugs to you all* JM, look forward to hearing how you are.
 

Spamar

Registered User
Oct 5, 2013
7,723
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Suffolk
Hi Anne, that's the one. I've recorded the prom, not had time to watch it yet. They're doing Broadway musicals at our local proms on the 28th. It always books out in a flash! I've seen him two or three times before at the same local venue. Looking forward to it immensely.
More later, hopefully, I've got things to do today and I've not even dressed yet!
Have a good day, one and all!
 

annebythesea

Registered User
Past Caring

Ann, I wonder if you might find it helpful to read the book Past Caring by Audrey Jenkinson. Of course you are still caring (and I don't think you should underestimate how stressful/wearing hospital visiting is - we did it for 2 weeks last year when mil was in and it was exhausting!) but the fact that the caring has stepped down a level may have given an opportunity for all of the last several years to hit you like a ton of bricks.

I'm sure you will feel better given time, and you have done so fantastically well to get the job that maybe your confidence will start to come back when you are actually there. Hope the gp helps, but the main thing you need may be time - and the PROPER holiday suggestion is a really good one.

xx
 

jugglingmum

Registered User
Jan 5, 2014
7,085
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Chester
Son made scout camp and dau made 7.14 train out of Chester this morning and will shortly be in Welsh cycling's care. I'm o train to work. Tired but have to blame Olympics in part. No bread for toast or sarnies. Will tryto update re hol later.
 

Grace L

Registered User
Jun 14, 2014
647
0
NW UK
Mornin'

AnnM, sorry you are feeling down. Hope the Doctor can suggest something useful.
You have been through so much these last few years as have the family ,
it will take a few months to adjust to your new lives.

When my husband was in for assessment (coming back home , not going into care), I also had bad treatment from some of the assessment nursing staff, if I said I was having a day off from visiting.
One of them took me to one side and asked (told) me to come in every day and shower my husband.
"Look, you may as well get used to it, you are going to have to do this when he comes home!" .
She told me they did not have time to help wash/ shower patients every day.
She was a Senior staff nurse on that ward, and the nursing assistants hated being on shift with her
if she was in charge. She did no hands on work as she was busy with paperwork.


Yes, operation still on as long as they don't cancel on me.
Getting hair cut this week, then extra shopping being delivered too.
One of the hardest things I will find ... is not to be bothered about cleaning / tidying.
I'm not OCD, just extra tidy, and can always find things to do. Doing nothing will be hard.

As I live in a flat I wont have to worry about gardening. Gardener does the bins too.
He's here 3 x a week and said he will pop in and see if I need anything.
Getting a bit anxious, not sleeping... worrying a little bit. Not many 'sleeps' to go.
At least I wont be getting it done over Winter, snow on the ground, extra slippy.


Saw MiL at the weekend, and I think my next visit will be my last before surgery.
Her cupboards, and her garage are well stocked with dry groceries and other things.
If you remember I organised shelves/ boxes earlier this year in her garage.
I've given my Niece money, and she is going to call in and see Granny with groceries.
Her Mum should be doing this, but as she is still avoiding her Mum (Unless of course she wants something!) .

Oh yeah, didn't tell you ..... SiL has been over to see her mum and ask to borrow money.
Only found out as niece told me. SiL wants a new car (second hand), we are not talking pennies.
I'm still PO !!! (sorry for swearing).
Nieces said her mum said ..."Well, (the money), its going to be mine someday anyways" .
MiL not rich , cannot afford 'loans'. Nor do I want MiL borrowing money !!

Hope you all have a good day, I'm still 'here' not in hospital yet .

Take care xxx
 
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Bagpuss77j

Registered User
Nov 5, 2015
30
0
Wirral
Any advice please

Mum is doubly incontinent and although its been really hard for me to come to terms with taking care of her Toiletry needs because I have such a terrible weak stomach I have got my head round it and got Into a routine of sorts, anyway things have changed over past 2 weeks and instead of poohing every other day it is constant sorry to be blunt but it is nor diarrhoea it is semi solid but constantly coming out and it is getting so hard to manage!
Sorry meant to post this as a new thread
 
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Amy in the US

Registered User
Feb 28, 2015
4,616
0
USA
JM, I'd like to blame the Olympics as well! (Not my fault I have to stay up late and watch, is it?)

All of your posts are so encouraging and helpful. Thank you all.

I will take Red at her word and ramble on at length. Thank you all again.

Red, while you really have no obligation to be here (given that you need some distance and all that) I do want to say how grateful I am to have your perspective. Again, no obligation, and don't think I want to contribute to you feeling that way!

"Down," "spent," and "running on empty" exactly describe how I'm feeling. Perfectly. Scarily accurate, in fact. So it is reassuring to hear that others have been through this (as it is reassuring about all other facets of this dementia journey).

I love to travel and in the past, having holidays (of the vacation sort) planned has been something that has helped me inordinately. Because of the uncertainty of FIL's cancer, I had not planned any trips for 2016 so I don't have one to look forward to, but will work to remedy that as soon as possible.

All your advice and comments about the holidays (of the Thanksgiving and Christmas sort; the differences in American and British English are often subtle and confusing!) is gratefully accepted and understood. The first hurdle was discussing the subject with DH at all. As tired and drained and upset as I am, it's his father who died, and he is worse off than I am, given the stresses of his job right now (most unhelpful). I delicately broached the topic last night, at a handy conversational opening, and while we made few decisions, it got us started. The next holiday here is Labor Day, which is sort of a Bank Holiday three-day-weekend thing in early September, so not very far off. Usually we go to my aunt and uncle's house (whom I visited last week) but they, conveniently, are doing work on the house (bathroom reno) and don't want guests. So we will either go down just for a day or they will come here or maybe DH and I will sit on the sofa for three days, but whatever we do, it will be low-key. So first hurdle cleared easily.

I am trying to make plans with some good friends for Thanksgiving, but in case it doesn't work out, haven't said anything to DH. Said friends would look after us and any cooking or work we would do, would be pleasant. We've not seen them in over a year so it would be great regardless, and it would involve going out of town either to their nice house or their holiday home. I don't have a Plan B yet, but will work on it.

I do not wish to go to my MIL's for Thanksgiving, no matter what. I think I told you all this, but for either two or three years running, we ended up driving to DH's parents' house, unplanned and at the last minute, for Thanksgiving. One year, we took the turkey and ingredients, and then cooked the meal ourselves. (Yes, we drove a turkey 450 miles and then cooked it. Insanity! Madness!! Never again!!!) So I'd quite like to avoid going there, for a variety of reasons.

Not only am I still upset with MIL, but I think that FIL not being there would be just too painful--salt in the wounds. (That was how I felt after my father's death--the first year I didn't want any holidays the way they normally would be, and spent Thanksgiving in Montreal, where it wasn't Thanksgiving, and Christmas Day, in California.) And I know if I wait, I will end up driving a turkey and cooking it again. Hence trying to cook up a plan with friends instead.

It's harder to think about Christmas. It's also hard because I don't know what to do about my mother. I know I just have to wait and see what my instincts are, closer to Christmas, but that's challenging with wanting to head off the in-laws. This is where I take a deep breath and say to myself, it will all work out.

Ann, I did want to say to you, that I think you are right not to try to bring MIL to your house for Christmas Day, as difficult as it may seem now/feel then. Your instincts are good and it would likely only be confusing for MIL, which would (no matter how hard you tried or what contingency plans you made) only be upsetting for you and your family. A visit to her in the morning of Christmas Day sounds very reasonable. That way you can stay and visit if it is working for her, and leave if it isn't. I know it's easy to say and hard to do, but if you can keep your expectations low, it could possibly help just a bit. I know my mother was more confused than pleased by her presents and Christmas stocking last year and for some reason, that was more upsetting to me than anything else (perhaps because "presents" were always so important to her, or because it was a visible reminder that Christmas with her won't ever be the way it was before). I imagine this sort of thing is true for many of us.

Ann, also glad the cold has gone.

I don't know what your GP can or cannot do, Ann, but it cannot hurt for you to go. I know I've neglected my own health for the past several years, while dealing with my mother got worse and worse, and am only now moving to remedy that. Certainly you've had your struggles in that arena and perhaps the GP can suggest something. If nothing else, a friendly professional ear may be helpful, who knows?

Maybe we ALL need a nice holiday by the seaside somewhere. Wouldn't that be something?

Grace, hope all continues to go as well as possible and please do look after yourself. We are all sending good wishes for your op and your recovery. Keep us updated when you can, we are all thinking of you.

Red, I didn't address the "forward plan" part of your post but I have been thinking about that and will continue to do so, I promise.

You are all so amazing and supportive and helpful and I do thank you. I would go quite mad without TP, I am sure. Warm wishes to you all and here's a cheer for Team GB!!
 

Slugsta

Registered User
Aug 25, 2015
2,758
0
South coast of England
Hi all,

Spamar, I am so glad that you were able to get to - and enjoy - another concert :)

JM, well done for getting your two offspring packed off to different places before work.

RedLou, thank you for your input and perspective. I will try and remember some of your sage words when the time comes.

Grace, I am very glad that it is 'All systems are go' for your op. I would like to pick up on one point - you said that you gave your niece some money to get things for MIL. I trust you are getting that back??

Amy and Ann, I can only echo what has been said - when we have to keep going, we do so until we absolutely can take no more. When the pressure is released everything seems to fall apart, simply because it can! Things will improve but it could take a while and you do need to be patient with yourselves. Meanwhile, there is no harm in seeing the GP and getting a general check-over. No point in suffering if there is something easily fixable!

Ann, I read quite a lot on TP around last Christmas. I saw people who had taken their POWs out of their residential home on Christmas Day - and most of them came back and said it had been a mistake, something they would not repeat . . .

The staff where Mum lives managed to catch up with the SW on the phone. SW says that they still can't find anyone to provide care for Mum and she is now considering 'respite' for her. Respite from what? Mum has not had a recent injury/illness that needs convalescence, she does not need intensive physio to get her back on her feet and she is not so dependent on me that she would need care if I was away (which I will not be). Furthermore, the situation at home would still be exactly the same when she returned there. She doesn't need respite, she needs a care package! :mad: She hasn't spoken to me about it but I know the staff share my view.

Other news is that Sky and Alf are tolerating each other. Sky is currently asleep on the bottom of our bed, Alfie is out 'untin'.
 

Amy in the US

Registered User
Feb 28, 2015
4,616
0
USA
Slugsta, I think feline tolerance is a pretty good place to be. Perhaps, with time, it will be a warmer relationship...or not.

I do not understand the difficulties you are having with your mother's care. That is to say, I understand your explanations but just can't comprehend why she cannot get a care package. I have no idea what options you might have for help, although others here will know, but clearly something needs to happen.

I'm so sorry; it must be very frustrating and stressful.
 

jugglingmum

Registered User
Jan 5, 2014
7,085
0
Chester
Feline news in this house is that our little cat slept on our bed last night, she always has been timid and runs away when we first get home from holiday, still ran away as I put food down tonight. Our cats normally feed in a manner to Katrine so big greedy cat is currently stuffing his face. He lost a lot of weight whilst we were away - dried food was always down - and spent a whole day miaowing at us for being back and is still following us round. Our cats are litter mates and 11 now. Glad yours are tolerating each other Slugsta - it sounds like you have done well.

Amy - it will take time to get over the summers events, your brain needs to process them all. The US seems to make more of all its bank holidays than we do, with only Christmas being big here.

Grace - you sound extremely well prepared and organised, think I need some organisation skills here - or just more time.

Ann - I am so so pleased you have got job, I was following with no time to post for first week and then in second week there was no data signal.

Amy - I did a fist pump on the train when I saw Steve Cummings had got selected for Olympics, and everyone looked at me - so us Brits can be loud, they then wanted to share in my good news. Commuter trains are very friendly on Merseyside.

So a few snippets of holiday, lots of driving, over 500 miles at end of week one to get to week 2, down after I'd ridden 95 miles that day, OH had everything packed we got away, stopped for tea after a couple of hours and then I managed to drive 10.30pm until 1.30 am before we stopped to sleep, woke up at 8ish and drove an hour for breakfast and to campsite, quick drop of of bikes and back to French market and supermarket as all close up at lunch time on Sunday in France. Kids bed not built fully yet but they manage on floor with mats when we are travelling and in tent on campsite.

First week is a cycling festival, moves round France each year, Dijon this year, about 11,000 signed up to event, most are cyclists, but some are wives and kids who don't cycle. Different signed routes each day so see a variety of countryside - route choices are 35ish miles up to over 100 miles each day.

Bed now - more tomorrow.
 

Ann Mac

Registered User
Oct 17, 2013
3,693
0
Hi everyone,

Red, as Amy has said, I'm another Bizarrite that appreciates your perspective on things - so thank you for still popping in xxxx The holiday is a no-go, I'm afraid - the last 3 years of my being unable to earn very much has wiped out any savings, and especially the last few weeks or so, when even the paltry carer's allowance has now stopped, has made things like a 'proper' holiday an impossibility for the foreseeable future - we have said that if we can get straight, perhaps this time next year we will look at a week away somewhere. But for now, the best we can do is odd weekends away in Old Red - and I do enjoy those, so I am not moaning x

Bagpuss77j - I saw that you had edited to say you had posted here in error, but I just wanted to send you {{{{{{hugs}}}}} - coping with incontinence is an awfully hard thing to do, and something a lot of carers are totally unprepared for. Many posts I've seen on TP are from carers who have found incontinece to be the last straw and something that they have found impossible to deal with, so please don't think you are alone in struggling with that aspect of care. I had done care work for years, and to a large extent was able to take it in my stride - however, there were times, when Mil had a tummy upset for example, where I also found it pushed me to my limits too. I really hope that you have the support of a decent continence service - you need to talk to someone in that field to find out if there are any pads/pull ups that they can provide that might help with the issue. And of course, speak to your Mum's GP, because constant 'pooing' needs to be checked out medically, in case there is a reason for it that can be treated. I really hope you can get some help with this, and soon xxxxx

Grace, I'll echo Slugsta's comment and say I hope you are getting reimbursed for the shopping money for Mil? Once again, your Sil's sheer cheek and 'me, me, me' attitude leaves me gobsmacked! I too hope that your Mil hasn't coughed up cash she can ill-afford - but I also want to say that if she does, then Hun - it isn't your problem to solve! At the moment especially, you really need to be concentrating just on getting yourself through the op, and your recovery xxxx

Annbythesea - thanks - I haven't heard of that book, but will check to see if I can get it on my kindle, or find a hard copy I can order on-line xxx

Slugsta, I am totally disgusted (but somehow, not surprised) at the situation with your Mum's care package. Utterly, totally wrong :mad: Like you, I honestly don't see how 'respite' would help. Its at this point, in your circumstances, that with a sinking heart (and if I could summon up the energy) I would be starting to make an awful lot of noise, going over the SW's head, to councillors, to MP's, even the press, basically kicking up a lot of fuss. Here, I know that SS offer contracts to a few specific agencies, tending to stick with one agency for 'Social care', and another for 'home care', for example. When I had some major concerns about an agency that supported Mil for a short while, I got told that if I 'refused' to have them provide care, then there wasn't anyone else - which basically meant that they had tied themselves in to using just the one agency, because I know that there are dozens and dozens operating in this area. I approached it that they had a 'duty of care' to give contracts to an agency that could adequately meet the needs of the service users in the area, and that if the agency they had chosen couldn't, then they had an obligation to sort it out - asap. In our case, a change in DC provision wiped out the need for the agency anyway - but not before I had got them at least agreeing to look at getting another agency on their books. Glad the kitty's are at least tolerating each other - fingers crossed that they move onto being 'friends' - but if not, at least there is no all out war and things are peaceful :)

JM - that sounds like an incredibly 'hectic' holiday! Lol - you must have come back more exhausted than before you went - though, its obvious you enjoyed it too, and that probably wipes out any tiredness :D

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
 

angelface

Registered User
Oct 8, 2011
1,085
0
london
Sorry you are feeling so low Ann. After what you have been through in the last few years,I think you really need to cut yourself some slack.

I know it sounds old fashioned,but could you manage a tonic from the health store? I expect you already have a good diet, but extra vitamins as well might help.

Could you bear to drop your standards on the house work so you get more rest.

When you go to the gp,I suspect he will offer valium or simular . Could you opt for sleeping pills and counselling instead?

Hope you dont mind the advice,just that after every you have done for mil, you have my greatest admiration. Wish I could do something to help.
Gill x
 

Slugsta

Registered User
Aug 25, 2015
2,758
0
South coast of England
Hi all,

JM, your holiday sounds utterly exhausting - but it is clear that you enjoyed it very much.

Hi to bagpuss and dad's carer. You will find a wealth of help and support on this site in general, and this thread in particular.

Ann, I would be utterly disgusted if your GP offered you valium (as angelface suggested)! He might well suggest blood tests for anaemia, thyroid and diabetes, all of which can cause low mood and fatigue. As I said earlier, there's no point in suffering if you don't have to! It's likely that everything will be OK but wise to make sure.

It's such a shame that finances mean you can't get someone to do the housework, ironing etc. Do you shop on-line? Many delivery slots start at just £1 - and I gain that by not picking up things on impulse like I do in store!

I think you need to work through the feelings of anger, resentment, guilt etc. I'm sure they will retreat in time. Hopefully, having the job to keep you occupied will be a help. You can do this, you are a strong, capable, intelligent lady!

Today I had an email from the SW. As expected, saying that she cannot find carers and suggesting 'respite'. Although she also goes on to say that she has not discussed this with her manager who might take some persuading! I phoned the AS line and they suggested I try some local agencies and then contact SW to say 'I have found this, why couldn't you?'. We were offered Direct Payments but I feel that agreeing to this would take this problem from SS and give it to me!

Due to all the extra washing, I ironed 8 tops for Mum today plus 1 sheet (I don't routinely iron sheets but this one did need doing. It might not have if hubby hadn't screwed it up in the basket when he took it off the line :mad: ). Oh - and a hanky as the iron was hot anyway. After that, I couldn't do my own things. I either need to get Mum more non-iron summer tops, or pay someone to do the ironing as I cannot/will not maintain this due to my own problems :(
 

Amy in the US

Registered User
Feb 28, 2015
4,616
0
USA
For Slugsta, Ann, and anyone else who has a pile of ironing to face: if you can tell me to forget about the in-law for the holidays, then I can definitely tell you to forget about the ironing!

Seriously, though, Slugsta, I think more non-iron tops for your mum are a very good idea, or just hire it done. There are so many things about being a carer that demand time and energy, and often things that only the carer/family member/PoA is/are able to do (because of legal requirements or whatever). But washing and ironing don't require a PoA.

I admit that when my mother moved into the care home, I did not take her any items of clothing that would require ironing, dry cleaning, or other special care (with the exception of her winter coat and gloves). I felt terrible not taking her, her favourite winter cashmere jumpers, but knew they would get destroyed if they went into the wash at the care home, and that would upset her. Mercifully she seems to have forgotten about them. Since you're in charge of the laundry, do what makes it easier for you.

Having said that, I do want to say that over and over and over people tell me to be kind to myself, or to take care of myself, and often I want to shout at them, I would if I could, but I can't.

So feel free to tell me where to stick my advice about the ironing! :D
 

Spamar

Registered User
Oct 5, 2013
7,723
0
Suffolk
I rarely iron, even now. My cleaner does sheets ( I lo o o v e freshly ironed sheets, in my dream world, I'm like the Queen, fresh clean, ironed sheets every night!!).
I simply cannot manage to handle sheets, too big, too heavy. Clothes are OK, but not too many!!!
 

Amy in the US

Registered User
Feb 28, 2015
4,616
0
USA
I rarely iron, even now. My cleaner does sheets ( I lo o o v e freshly ironed sheets, in my dream world, I'm like the Queen, fresh clean, ironed sheets every night!!).

I would HAPPILY sleep on clean, freshly ironed sheets each and every night...if someone else were doing the washing, ironing, and bed making.

Does Her Majesty really do this?

I'm sorry, it's SO off topic but now my interest is piqued...
 

Slugsta

Registered User
Aug 25, 2015
2,758
0
South coast of England
I agree about the sheets - the idea of sleeping on freshly laundered and ironed sheets every night is heaven. I don't know if that is what the Queen does, she is very thrifty in some ways. I wonder if anyone really knows?

I got caught with Mum's things this week. It is 'very hot' here by our standards and I want her to be comfortable. She has clothes packed into her wardrobe, in a chest of drawers and also filling the airing cupboard - which is interesting as she has never been interested in clothes or fashion! I need to try and have a look to see what she has got. In normal weeks it won't be so hot and, I hope, I won't have to deal with so many bloodstained things. The microfibre sheets I bought wash and dry very well without needing ironing, it is a cotton undersheet that I felt I needed to iron. I'm going to buy some 'kylie lookalikes' to try and protect the bed from both blood and worse in future :eek:

I have emailed a few local care agencies and asked about availability for the times Mum will need. Then, if they come up with anything, I can pass these onto SS. I want to see Mum's GP soon too and will ask if there is anything he can do to help.

Amy, I have seen your posts in various places in the forum and am always impressed with your helpful and kind messages (((hugs))) :)
 

Amy in the US

Registered User
Feb 28, 2015
4,616
0
USA
Slugsta, stop, I am blushing. So many people have been so kind to me, along this horrid journey, that I just want to do what I can. And right now it seems this is all I have energy for.

To be honest, I am also procrastinating the dreaded paperwork (I considered other adjectives and discarded them). It's not that I don't know what to do, it's not that I am not capable, I simply don't want to do it. (And the places that don't answer their phones and require me to send them all sorts of extra stuff don't help.)

Yes, I do hope the bloodstained clothing is a one-off for you.

It's interesting what you say about the clothes. Pre-dementia, my mother was quite interested in fashion and clothing, and she was also not a person who was organised or interested in clearing things out. Having said that, when I cleared her home last year, I was really shocked at the amount of clothing that had accumulated, and also the way she had been storing it. I found clothes in the cupboard in the spare room dating back to the 1980s; she had clearly just moved those from the prior two houses and never sorted them and not touched them since. Fair enough (I hate to tell you about the state of my spare room closet, no space for guests' things).

But what was odd, and I'm sure this was part of the dementia, was that she had clearly been buying all sorts of clothes for years, and most of them were piled up all over her condo. Piles on the sofa, piles on the chairs, and piles on every surface in the bedroom. I think it has something to do with her not being able to "see" things, unless they are in the open. Certainly she only ever wore about the same five tops, so they weren't clothes she was wearing, just...that she had?

She did the same thing with certain snack foods and, oddly enough, hair styling products. Oh, and boxes and boxes and BOXES of facial tissue/Kleenex.

When we moved her into the care home, I took her plenty of clothes, but she kept asking for more and more, so I kept bringing her more and more, until she stopped asking. Her closet there is generous, but stuffed full. :rolleyes:

She did the same thing with snack food items, kept asking for more until we finally filled an entire shelf of a bookcase with junk.

I'm only mentioning this because there seems to be some sort of minimum threshold of "stuff," that my mother needs to feel comfortable, and I wonder if that could be the case for your mother as well. Certainly sort through it and make some items "disappear," if need be, but perhaps do this where she can't see you. My mother gets upset if I try to clear things out of her room, but if we go in and do it when she's not there, it doesn't seem to matter. Of course, she has no short-term memory so I doubt she'd notice anything was missing, but you never know. She was quick enough to notice missing glasses and dentures, but that might be different.

Good for you for calling the care agencies. I am still baffled by their (lack of helpful) response to you. Please keep us posted.

Ann, I was mulling over a response to you. While I don't know if there is anything the GP can do to help, it still seems reasonable to get checked over. I must say that although she couldn't do anything to help in a practical way about my mother, my doctor was incredibly sympathetic, and somehow that really helped. I felt like she was the first (official) person who listened when I said that I was not okay, and it was incredibly validating. So I hope that somehow, it's helpful for you.

I really need to either tackle some paperwork on my desk, or go trudge through some treacly housework/chores/errands. Not appealing options!

As always, thanks for listening.