So bizarre !

[Slugsta]

Evening all,

Spamar, I do agree that you are sounding much brighter of late. I guess things still come and bite you on the bum at times though! Sorry that you have 'tweaked' your back, I hope it settles soon.

Ah yes, despite saying that my son is now a paragon of virtue, he still leaves drinking glasses in his room when he is here!

TBH, I am one of the messiest people on earth. When we first met and OH used to visit me in my little flat, he thought my bedroom door was kept firmly closed for reasons of modesty. He got an unpleasant surprise when he saw the mess I was trying to hide! I'm a lot better now but still far from tidy, I'm afraid. Mind you, I do get cross with OH for not throwing his rubbish away and also for not clearing up if he has dropped/broken something

Red, I'm glad that the wetroom is now finished, it sounds as if you are both pleased with it?

JM, I can't remember when Mum last ate a piece of fruit! She does get a small helping of veg with some of her ready meals and that's about it. I'm not going to fret about ti though - she's 90 now so I'm not going to start giving her 'healthy eating' advice.

Mum has lost quite a lot of weight over the past few years. I found some knickers in her drawer that have clearly never been worn and will be too big for her now (even is she was wearing proper knicks rather than pull-ups). They do fit me nicely though. . .

I realised recently that it is a long time since Mum last rang me, I suspect that she no longer remembers how. Her friends and carers all have our numbers though, so we are easily contactable. My heart-rate shoots up as soon as the phone rings

Oooh look, nearly midnight! Not long to go until I can book aquagym for next week and then (try to) go to sleep

 

[Ann Mac]

Hello everyone,

Great that the wet room is now finished, Red - lol at the comment about your OH actually admitting you were right, similar here when it comes to decorating. Spent a long time talking OH into the feature wall in teal blue in the front room, and had months of him insisting it would 'too bright', would 'look odd', etc - once it was done, a complete change of tune Yep - posting early again, because I'm waking really early again. After having two fairly good nights sleep on the trot, now back to the usual 4 or 5 hours broken sleep. Dropping off easily enough, but then a couple of hours later awake and tossing and turning for a while, back to sleep eventually and then wide awake from around 4.30 onwards Some of it is the job - its all consuming to a certain extent at the moment, and I go from thinking 'Yep - this is going well' to 'Flipping heck, I'm not getting where I need to be with this, fast enough'. A lot of it is Mil - I am refusing to tackle the search for a home solo, but at the moment, OH is not only working nights, but being as he has switched from working with adult services to child services, he has a lot of training courses to attend - which are of course, during the day. He's lucky if he gets 1 whole day free at the moment, and its likely to be that way for another month. Between that, and me flying off here , there and everywhere (London and Manchester next week alone!) as well as everything else with the new job, we have done exactly NOTHING about finding somewhere. And that's a big reason for the tossing and turning and not sleeping. I really want to get poor Mil settled somewhere nice, its a priority - yet actually sorting it is so complicated by the lack of time and both mine and OH's new jobs at the moment, that it's just not happening. The idea was that next week - when OH has booked some time off - we would start to visit places, that I would be strict about sticking to my hours - but I have a full day in both London and Manchester that I now have to do, plus meetings scheduled around them, and once again, its going to be tough to fit in the visits. Hence the tossing and turning, because it feels like we are neglecting Mil and our responsibility to get her out of that hospital

And yes, worrying about how she is at the moment, about her moods - visits are so unpredictable, the moods so variable - but rarely good moods. Its not that I don't want to visit, its that its simply not a pleasant experience. I keep reading about how handing the 24/7 responsibility to the 'experts' allows family to start to enjoy visiting and to spend quality time with their loved one - I don't find that to be the case. She is, most of the time we are with her, either paranoid about those around her, scared and upset - or wanting us to take her home. Its an awful thing to say, but its actually a relief when she is in the loop of wanting us to leave after just 20 minutes or so. I mentally 'brace' myself before I ring the ward bell and its always a relief to leave. Its not nice to feel like that

Last night, JM, I suggested to daughter that she do the dishes and got an indignant 'But you made me do them last night, its not fair if I have to do them every night' in response. When I pointed out that it 'wasn't fair' that I cooked every night, she looked at me as if I'd lost the plot. More work needed in that area, to change attitudes, I think Not gone so far as putting the heating back on here, but I did put the fire on in the front room last night, as it was decidedly chilly.

You do sound really bright and breezy Spamar - and its just lovely Hope the back eases soon x

If the phone rings and its a withheld number, my heart rate shoots up too, Slugsta - first thought is always that its the hospital and has something happened? I don't know that Mil could ring us now, I think she has long lost our phone number, which she used to be able to dial without even thinking about it - however, its not so long since she phoned the police (having got hold of one of the ward phones) and reported the staff there for keeping her prisoner, so she still has the ability to use the phone, or at least the ability to use to ring 999!

Another meeting today - with someone who used to be my line manager, many moons ago - and who I really cannot stand. However, she is someone I may well have to deal with at least occasionally now, so I am going in determined to be professional and just get my job done. Just hoping she takes the same attitude!

My printer arrived yesterday, but still waiting for the bulk of my IT stuff - whats the betting it turns up today, whilst I am out and OH is sleeping after a night shift, and I end up spending at least part of tomorrow having to try and organise collecting it from the sorting office ? (because once it goes back there, the rule is you have to wait 24 hours to collect it) - that's if its even open on a Saturday. I leave for London just before 7a.m. on Monday, so if I miss it today, and can't get it tomorrow, its going to be a massive pain in the backside - once i get the gear and get it set up, I have a massive amount of learning to do and admin to catch up on, the longer I'm without it, the harder its going to be!

Hope you guys all have a good day - Amy, hope all is good with you and your Mum, too xxxxx

 

[CeliaW]

Ann, you can arrange to collect a parcel from a local post office if you miss delivery and the opening hours might be better. Hopefully you won't need to x

 

[Ann Mac]

Ann, you can arrange to collect a parcel from a local post office if you miss delivery and the opening hours might be better. Hopefully you won't need to x

Thank you Celia - I didn't know that, and it would be easier if I could do that (if I miss delivery). Not least because there is no car park for the public at the sorting office, the nearest car park is a good 15 - 20 minutes walk away, and some of what I am expecting will be on the heavy side. Fingers crossed that I don't miss any parcels while I am out this morning, but if I do and can get them from my post office, it will certainly be an awful lot easier xxx

 

[RedLou]

Ann - as OH has booked the time off, can't he visit some on his own with the idea of you only re-visiting the one or two he thinks hit the mark?
Slugsta - SO empathise with the heart rate and the phone.
Hope you all have a good day.

 

[jugglingmum]

I leave a note on the door for parcels to say leave with a specified neighbour, to be fair any neighbour would take it. Parcelforce take it back to one of their depots (used to be Sandycroft Deeside for us but now Huyton) but their standing instructions I understand are to leave at local PO if they have the space, so they are normally left at PO and can be picked up same day after 4. Royalmail, for smaller parcels it is the sorting office and you can have redelivered to a post office.

Redlou - I missed that your wetroom is finished, sound fab, glad OH likes it. Our bathroom is nearly finished but work seems to have stopped, cyclcocross season meant 7 bikes to be stripped and serviced, small treaks still needed on a couple and OH has enthusiastically embraced son's fishing obsession, they keep going off on boat trips, or sitting on breakwaters for hours on end.

Ann - if visits are so hard, have you tried cutting back to just laundry trips. If she is settled on the ward, all you need to do is see enough of MIL to confirm that. Her illness has moved on and she is in her own little bubble now it seems.

 

[CeliaW]

JM, isn't leaving a note just giving the heads up to would be intruders that the house is empty?

 

[Onlyme]

Our local PO will only hold small parcels, everything else is refused.

 

[jugglingmum]

JM, isn't leaving a note just giving the heads up to would be intruders that the house is empty?

I agree but where we live postman leaves items of value outside most houses.

I only do this when nipping out for a short time(eg school run - 10 mins or dog walk ), and it isn't visible from the pavement.

The items we have of value worth stealing are normally planned and targeted thefts so a note wouldn't make a difference.

We only have 1 telly, kids don't have much in the way of electronic devices.

 

[RedLou]

Went to the funeral of a friend this morning -- was a very expected death as she had had incurable cancer for a while. She had moved from the neighbourhood a few years ago to be close to her daughter but they held the funeral back here. Anyway, I digress - another neighbour took me in her car. Her father was diagnosed with vasc. dem. two years ago and, it emerged, hasn't had a single follow-up appointment with the GP, let alone a memory clinic, since. I was shocked. As you know I'm familiar only with a foreign system - is this degree of indifference normal? I would have expected semi-regular testing for starters, so that there was some indication of how far he had deteriorated. ?

 

[canary]

Went to the funeral of a friend this morning -- was a very expected death as she had had incurable cancer for a while. She had moved from the neighbourhood a few years ago to be close to her daughter but they held the funeral back here. Anyway, I digress - another neighbour took me in her car. Her father was diagnosed with vasc. dem. two years ago and, it emerged, hasn't had a single follow-up appointment with the GP, let alone a memory clinic, since. I was shocked. As you know I'm familiar only with a foreign system - is this degree of indifference normal? I would have expected semi-regular testing for starters, so that there was some indication of how far he had deteriorated. ?

Its probably different in different parts of the country Redlou, but that was pretty much what happened to mum. She had an MRI, got seen in the memory clinic, started on Aricept, bish bosh, job done - discharged from memory clinic. I dont think that she has had a specific follow up about her Alzheimers at the GP since, but then, she is now in a CH and its not really appropriate IMO.

 

[Spamar]

Everything changed a few years back, Red. When OH was diagnosed there were regular follow ups for a couple of years. Then the system changed and specialist nurse took over. That was fine, she came regularly and could change drugs etc. Then the system changed again and you had to go to gp for everything, there were no regular checks, in fact very little info on diagnosis either. A friend and myself spent 2 years agitating our GPs to get things sorted and we were both happy to talk to anyone newly diagnosed, but nothing happened and we gave up in sheer frustration!
Given the differences in health areas, that's basically how it is, you get a diagnosis, get given tablets if appropriate and flung out to sink or swim.
Even with help in the early days I made a definite decision to get to know everybody involved in providing any kind of help. It paid off later when I wanted help for OH and knew where to go. It helped that when I did have Carers breakdown, I had it in front of a county family Carers member who speedily sorted out help, from a group even I hadn't heard of. The DIST team were worth their weight in gold!
I think it's just awful the way dementia sufferers and Carers are treated nowadays! That's being polite, of course.

 

[Slugsta]

Evening,

Ann, I do hope you are able to get your parcel easily. We are very lucky in that the sorting office is just round the corner from us - although the need to wait for 24 hours before we can collect anything after a failed delivery is a bit of a pain! I always ask that deliveries are left in the garage if we are out, but that is not always possible.

I also hope that the meeting with the previous line manager goes smoothly - that's probably the best you can hope for with that particular person.

JM, it must be very frustrating to have the bathroom so close to completion - but not quite there and completion not getting nearer I do hope it is all finished soon.

RedLou, how very frustrating, and upsetting, for your friend Our experience is that Mum was diagnosed at the Memory Clinic, reviewed after 3 months and will then be seen 1 year later. They certainly haven't offered any help, services etc.

We took Mum shopping this morning - as usual for a Friday. A few weeks ago we found the bottle of laundry detergent in the fridge. Today it was in the freezer

Mum's continence seems much better so it does look as if the problem last week was an infection. She is still wet most mornings but the 'training pad' seems to be saving the sheet most times. Fortunately, she recognises that she is incontinent and doesn't seem bothered by it, so we don't have the issues with her denying it like Ann's MIL did. She seems happy to wear the pull-ups and to use a training pad on the bed and on her favourite chair - which really makes my life very much easier!

Hubby and I are going to a 90th birthday party tomorrow. The gentleman concerned is a bowls buddy. Hubby says that the gentleman is very hard of hearing and partially sighted. Someone has to hold on to the back of his trousers to keep him upright - but he really enjoys his hour of bowls a week and isn't too bad, all things considered.

It's still mild and dry here, I understand that it's due to last for another week or two Hope you all manage to enjoy some sunshine, somewhere.

 

[Ann Mac]

Morning all,

Its took me over an hour to get on here this morning, kept getting '500 internal server error' message, but having finally managed it and just typed out a post, I hit 'preview' and lost the flipping lot . Not logged out - the whole page just seemed to reload, minus the reply I'd typed, and for once I hadn't remembered to copy the post before hitting preview, and the back button just took me back to logging in. Very frustrating!

I managed to get back half an hour before the postman delivered another piece of equipment yesterday - one of the heavier bits of kit, so I was glad not to have missed it. Most (if not all) of what is being sent is coming by recorded delivery, JM, so it can't just be left, it has to be signed for. If the neighbours were in, they would take it - but most of them work so catching them in during likely delivery times is rare. Still got some stuff to come, one 'very important' item, and lots of bits and bobs like publicity items (which I need as I've been asked to set up an info stall at a college open day, early next month) and business cards and so on. Hoping that not all of these things have been sent recorded delivery, but will have to wait and see.

Red, it may come to OH doing some solo visits, but I know he would prefer me to be there. However, needs must - we really have to get this sorted.

It seems to me, from what I've read and been told, that over the last 2 or 3 years, the support after diagnosis has changed a heck of a lot. Mil was diagnosed about 7 years ago (hard to remember exact date) and there were several more appointments at the memory clinic in the 3 or 4 years after that, before she moved in with us. She also had a SW - though we didn't know, as Mil didn't think/remember/want (take your pick, could be any of the 3 reasons) to let us know that this SW appeared to be getting in touch quite regularly. It was only when the SW wanted to introduce home carers that she persuaded Mil to let her get in touch with us and invite us to the visits that she made to Mil. Things seemed to have changed pretty rapidly after Mil moved here though - after one last 'emergency' memory clinic appointment, we never heard from them again. However, we were allocated a CPN and SW - though I didn't realise at first that as soon as Mil was considered 'settled' the SW would close her file, and that on future occasions we would face a stream of SW's, one 'appointed' each time a need arose (like a review at DC) who would then disappear and there would be a new face again next time a SW was needed. (Actually, there have been 5 different SW's involved just since Mil's hospital admission, 4 of whom are no more than names to us, as they have never actually turned up at any of the meetings - the current one, we were told would 'be in touch' to help us with finding a home for Mil - and we are still waiting). It should have been the same with the CPN, but we were lucky enough to have a CPN who maintained contact and who - seeing how Mil was - never closed Mil's file. Talking to a couple of friends who have sadly had their parent diagnosed in the last 2 or 3 years, though, they do seem to have been left quite high and dry. Its not just that they are not given any sort of follow up support or advice, they are not even told where to look if they do need help Spamar is right - its the way carers and PWD's are treated now - the services will claim its 'more efficient' - it isn't, it just saves money!

I am so glad, for your Mum's sake (and yours) that your Mum seems unconcerned about the continence issues, Slugsta. Mil was either furiously angry in her denial, or occasionally, embarressed and so upset, and those reactions were the hardest part of coping with the issue for me (and her, too). I had to smile at the idea of the 'Birthday Boy' needing someone to hold onto his trousers to keep him upright for bowling - bless him, long may he continue to enjoy the game xxx

The meeting yesterday went far, far better than I had expected. Other senior staff were involved, and the enthusiasm was off the scale - much to my surprise, I actually think that this particular organisation could be one that I will be abe to work with very closely, so I was really happy with the outcome so far - shocked, but happy, lol!

I came home to find a letter from the chair of B.O.G. at daughters school, and once again, everything dismissed in two brief paragraphs, no answers and a reccommendation that I write to the BOG if I am not happy - the fact that I have followed this step and writted TWICE already wasn't mentioned. According to the timescales given in the schools complaints procedure, if there is a need, the BOG's involvement should happen within about 3 weeks of the original complaint being made - its been nearly 8 months since I first wrote to them formally. The LEA seem happy to take the school word that the complaint is 'only at stage 2' (that is a formal meeting with the head - which happened back in May) and that I havent taken the steps to move it further on in the procedure - this despite them having recieived from me copies of both the letters I sent stating that I wanted to BOG to investigate. I feel like screaming! If a lot of the issues I had raised had stopped happening, I would have left this alone, but they haven't. And the behaviour of certain teachers, who seem to have taken a dislike to my daughter because she and I have complained is having an awful impact on my girl and her attitude to school. Estyn have been back in touch and they at least have now given me info on an alternative route, involving the Ombudsman, which I guess is my next step - I could so do without this, but how do I let my daughter think that what happened to her is acceptable and that nothing will be done about it? I simply can't

Visit to Mil today, hopefully with OH, and the usual running round to theatre class for dau. Need to sort out everything ready for Mondays trip to London, I'll sort out what I need for the Manchester trip on Tuesday, have another meeting Wednesday and then Manchester on Thursday. I really need to fit in a vist to my nearest work IT hub, asap, but as I also have a London trip on the 6th of next month and several more meetings scheduled, I haven't a clue when I can fit that in, without going massively over my hours - never mind fitting in Mil and the school and just everyday stuff! It will all calm down, but at the mometn, pressured doesn't come close!

Hope you all have a good day xxxx

 

[Spamar]

Afternoon everybody, I've had a lovely morning pottering around our local yearly bash at a food and drink festival. Food and drink everywhere! All delicious! Went early cos I know how crowded it can get, took the rollator, cos 2 sticks and bag of goodies don't work! At least I can sit down as and when with the rollie, and it's the right height for me. Straw bales are too low, as was the other imported for-the-occasion seating. However, it's an effort on shingle and on slopes! However, enjoyed it lots, it was so hot!!! I sat in the shade for my honeycomb ice cream. Mostly no wind at ground level, though some of the flags were out straight, and it's windy here. I did think ahead and took extra painkillers just before I went. That's one thing I got right.
This evening I'm going back for dinner at the pop up cafe they've sorted. It a group of young producers who did a similar thing in London back in the summer. It's the first time I've been out to dinner without company with me for years. OH and I often used to go out, that the last two or three times he started picking things that he fancied the name, but I knew it was something he didn't like! Changed over meals more than once!
However, this is meant to be informal, so hope I find somebody up for a chat!
Hope you're all having a good day!

 

[Spamar]

Just remembered, one of the things I found was gin and tonic chocolate! Now why did I immediately think of Izzy? Didn't buy any though!

 

[jugglingmum]

Brief pop in - not really caught up wtih thread since schools went back.

Ann- so sorry about issues with school, I'm afraid I'm not surprised. The fob off we and dau got from staff were multiple, in fact in some ways have done more harm than original bullying.

Food festival sounds fab, nearly got to one last week but ran out of time.

We were meant to be away this weekend but weather forecast for Anglesey looked really grim, and not too bad here, son is growing up, so gentle ride on Sat with him is no longer, gone further and faster than I did yesterday. On the plus side he is destroyed, on a minus at his age that makes him stronger pretty fast.

May go hazelnut picking tomorrow, and blackberry picking, we collected conkers towards end of today's bike ride.

 

[Ann Mac]

That sounds like a really lovely morning, Spamar - I'll pass on the honeycomb ice cream (detest the taste of honey!) but tell me - do those chocolates come in brandy and coke flavour? 'Cos if so, I'll have a dozen Enjoy the dinner tonight, and I hope you meet some lovely people to have a natter and a nice time with

Its blowing a real gale round here, JM - can imagine that on Anglesey it might well be worse - much as I love the place, its not so much fun when the weather is fierce and you're on a camp site!

Visited Mil this morning, not the best of visits. The tears again when she saw OH and I, though she couldn't/wouldn't say why. Wearing a top that wasn't hers, and very confused, a couple of rambling confabulations about a sing song, that didn't make much sense but she smiled when I reminded her of some of her favourite songs - big dip from a few weeks back when she could manage to remember a full chorus and/or verse of several songs, today she was stumbling to remember the words before she got to the end of the first line. One of the patients walked towards, a new chap, and mumbled, asking where 'she' was and in an instant, Mil turned really nasty, shouting at him to 'S*D OFF'. When I tried to calm her, to gently remonstrate, she said she 'hated him' and that she wouldn't tell OH, but would whisper to me why. Leaning close, she accused the poor chap in a whisper, of having called her a particularly foul name 'two weeks ago' (he wasn't even a patient there at that time) and then went on to say that she told him that if she was a '***** ******', then he was a bigger one - because he came from her groin I can't imagine where that one was going to go, so after she started saying something about him being her grandson (he looked a good 10 years older than she is) I managed to change the subject back to favourite songs.

One of the nurses smilingly announced that she had a 'present' for me, and produced one of the large sturdy 'bags for life' that we had brought some of Mils clothes in previously. It was crammed full. On Wednesday, I had been told that there was no washing, when I had asked. I took the bag and explained that I probably wouldn't be able to get back with the washing until perhaps Tuesday or Wednesday, as I was going away with work. I got a very cross look and was informed Mil was running out of clothes, and that their washing machine had broken down. Big as the bag was, no way could all of her clothes have fitted in there, so I asked could the nurse please check Mils suitcase, as at the last count, Mil had about a dozen pairs of trousers there, even more tops, and a mix of 10 or 11 pj's and nighties, plus cardies, dressing gowns and bra's. She said she would look - we didn't see her again after that.

We stayed about 45 minutes, Mil wasn't too bad when we left, which was a relief. Got home, after driving with windows down because of the smell from the bag, and found that there were 5 pairs of trouser, 3 tops, 1 bra - and a lot of urine soaked nightwear, some in separate plastic bags, the rest mixed in with her other clothes. Everything was stinking - once again, where the pj's were concerned, not one full set - tops from some, bottoms from others, and both her light dressing gowns were also in the mix. Too much for one load, I had to do a quick wash on the colours, put them to one side, then a hot wash on the nightwear, then do the colours properly - and then the whites again, because mixed in with them were God knows how many tissues, which had partially disintegrated throughout the wash. By the time I put the whites wash on for the first time, I had the windows open and was spraying air freshner everywhere. All the bags went straight into the bin.

I know the nurses are busy. But it appears that a lot of Mils clothes can't be found, and I don't understand why. I don't understand why they tell me that there is no washing on one visit - then present me with overflowing bags just 2 or 3 days later. I also don't understand why urine soaked clothes can't be put into separate, sealed bags - rather than being left in open bags to fester until they are given to me. When I was faced with dealing with all that this morning, I ended up feeling so angry - I don't mind doing Mil's washing, but I am getting more and more fed up at the 'missing clothes' and the fact that its often made harder and more unpleasant because tissues aren't removed and because urine wet clothes are being mixed in with other clothes, instead of sealed in bags separately, and I'm then having to combat my house stinking, as well as the washing I fought back the urge to phone the ward and blast them today - but I am going to say something when I next visit - I think I will take in a load of small bin liners and ask them to seal wet clothes into them. I'm also going to ask to go to her room, to check myself for her missing clothes

 

[Spamar]

I can't remember, Ann, there were so many flavours!
Went out to a meal last night as well, part of the same food show. We started with strawberry gin and tonic. Very strong, I may add. Served in a jar, with straw! Jars obviously sponsored , special labels!
It was OK, food good, saw a couple of people I knew, but they were working! Found some people to chat to, but came away early. I think I really need someone to go with if I go to something like that again.

 

[Slugsta]

Evening all,

Spamar, I'm very glad that you enjoyed your food and drink day. I can understand why you would prefer to have company for dinner - eating is such a social event, the company and conversation are as important as the food.

I would happily try G+T chocolate I never drank gin until my son converted me. Now it's my warm weather choice, especially before dinner. Rum and coke is still my usual tipple though.

JM, it sounds as if you made the right choice in staying home with the weather so bad. One of my friends did the Mallorca Ironman yesterday. She said the bike leg was rough - driving rain, thunder + lightening do not go well with sharp descents and hairpin bends!

Ann, I'm glad the meeting went much better than you feared. It sounds as if this is going to be a great job but it will take a while to get bedded in.

The washing situation stinks - in more ways than one! Like you, I fail to see how there can be no washing one day and then several loads just 2 days later. I understand why patient's rooms are kept locked but it does mean that family are not able to easily sort out clothes etc

Well, we have bitten the bullet and put this house on the market. I'm sure it is the right thing to do - I just wish we could go from here to being settled into a new place without all the hassle in between!

It's been pretty good here, weatherwise. I do hope everyone has had a bit of decent weather to enjoy.