1. Expert Q&A: Living well as a carer - Thurs 29 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Thursday 29 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

  1. Slugsta

    Slugsta Registered User

    Happy Easter everyone :)

    Jm, I'm sorry that worrying about the cake gave you a sleepless night (((hugs))). I used to make cakes for friends, but stopped doing it because it took more time and worry than it warranted!

    Son arrived yesterday at 5.30, we went out and had drinks overlooking the bay. Today's plan is lunch overlooking the sea - we booked a table to be certain as everywhere will be crowded today,
     
  2. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,918
    Suffolk
    Happy Easter, everyone. Hope you are all having a good day, lots of cake and good meals!
     
  3. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,701
    Happy 18th to your daughter, JM - I hope she has a fantastic day :) I'm sorry you had a sleepless night, hun - easpecially as I'm sure dau will enjoy the cakes anyway - and I hope appreciate your efforts - without the additional fancy bits and bobs!xxx


    Slugsta - enjoy your lunch out xxx

    *waves* at Spamar - hope you are OK, Hun ? xxxx

    So - finally established there is a respite bed - but just the one that they agreed to 4 years ago 'as a trial' - and it's booked up, months and months in advance. Thats it, nothing else. My friend is left phoning round, trying all the private homes, and hoping to find one that has a free bed that they will let her have around the operation dates. Its not looking good. And nowhere for them to turn - no one in the local authority will take respnsibility for helping them - they just pass them from one department to the next, no straight answers, no advice - no admitting that there is a problem, even. My advice has gone to 'Threaten them with the press and carry the threat out if you have to'. Because thats the only thing that seems to stand any chance of working. It's left me feeling upset and stress - God only knows how my friend and her Mum are feeeling.

    Its been a lovely, but hectic Easter here. Son and his GF (and dogs) turned up on the Thursday evening, instead of the expected Friday morning - they decided to beat the Good Friday morning traffic, so I got them for an extra night :) Huge improvement in Oscar dog, in terms of him being settled and less destructive, but still some issues - and you still can't let him go off-lead. However, so much more confident, and actually coming to me and demanding cuddles now :) And he's really playing with the other dogs too - so lovely to see.

    Easter Friday, we took the hounds for a hike around Alyn Waters Country park, including a play in the river. Saturday we spent at the seaside, and Sunday we headed to a huge Easter Car boot sale, followed that with a visit to Mil and then an humongous Easter roast dinner.

    To my amazement, youngest suddenly decided to come and visit Mil with us! I was so pleased - I've been worried that if we suddenly lost Mil, and youngest hadn't seen her, she would so regret it. I think she was really shocked by how much her Nana had changed though - she is so much frailer now. But she handled it OK, and I think she feels better for seeing Mil.

    Mil herself had had a long lie in - apparently doing one of her rare marathon sleeps - right through the night, and through most of the morning. She had refused to get up and get dressed, so was still in her bed, propped up on her wedge cushion, looking very comfy, and watching an old episode of 'Columbo'. All of us greeted with big smiles and kisses - not that she knew our names or anything, but as long as she was happy to see us, thats' fine. The Easter Egg that oldest had bought for her was also greeted very warmly, lol! She was quite chatty and pretty alert. She left us all in pleats by very clearly telling oldest that she liked Columbo and would like a date with him. Oldest asked what she would wear if she went out with him. 'If I went out with him? said Mil 'I'd wear nothing at all!' .

    We stayed for around 45 minutes - any longer, and we know she starts to get agitated. We (of course) got the 'squeezing fingers' trick - at one point, she was holding son's GF's hand (sons GF always comes with him to see Mil - and she is so lovely with her!) and actually asked her was she hurting her fingers?. GF told her she was't - to which Mi replied 'I'll try harder then'! So she does know exactly what she is doing!

    Nurse M popped in with some meds for Mil, and quietly told me that Mil has never been so settled. The reduced 1-1 hours are working out really well, although staff check her every 15 mins, she is quite content in her room, with music or a film or one of the old TV series, talking to herself, singing and/or cuddling her doll or a soft toy. She can suddenly 'flash' and hit out, and of course, the attempting to squeeze fingers or scartch and pinch is still something to watch out for. But on the whole, she is a 'different woman' from a few months back - and what was nice, was the very obvious pleasure on Nurse M's face when she told me this. The CHC have agreed that the 4 hours can 'float' - i.e., the home use them when Mil's needs dictate they are best utilised - and its working out brilliantly. All I want now is for her to remain this settled and agitation free for whatever time she has left - I think, after the horrendous time Mil has had with the delusions, paranoia, hallucinations and everything else that she has had over the last several years and the absolute misery her life has been because of them, it's the very least she deserves now.

    All my older chicks are heading back this morning, and youngest is off for two days, with friends, to Norwhich - of all places - to go to a concert. Some group called Koala? Anyhow, she faces a 5 and a half hour train journey to get there - rather her than me! So OH and I are having a very quiet end to our Easter. Tomorrow, I will only work about 2 - 3 hours, because Wednesday and Thursday I'm in London - with travel, one day of meetings and one day of training, it addes up to a minimum of 18 hours, so that will be me done this week.

    Enjoy whats left of your Easter break, and much love to you all xxxxx

     
  4. Slugsta

    Slugsta Registered User

    Ann, it is so lovely to hear that MIL is settled and happy - long may it continue :)

    Youngest must really want to see that band, to put up with such a long train journey! How is her general behaviour at the moment.

    It must be heartbreaking to know that the respite bed you fought so hard to get is not being used as it should. My heart goes out to your friend - but I know that is of absolutely no help to her whatsoever :(

    Jm, I also send Happy 18th Birthday wishes to your daughter.

    We had a nice lunch with our son yesterday (glad we had prebooked as the place was packed!). We ordered lots of starters and ate tapas style, very sociable and relaxed. He is going back to London today and we (OH and I) are going to visit our friend in Salisbury hospital.
     
  5. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,918
    Suffolk
    Morning all!

    Thank you Ann, I had 4 pain free consecutive days last week. Unfortunately it didn’t last! However, I managed roast lamb and potatoes yesterday, plus home made gravy and mint sauce. Lucky I’ve plenty of herbs growing! The rest of the food came out of tins! But it’s the first time ive done anything like that for several years. Just need to keep up with the exercises and keeping in touch with my small army of friends! It all helps! Team Spamar! I’m going to try and pick rhubarb and asparagus later - they’re the only useful things I grow these days, though I used to have a full veg bed, soft fruit trees and a flower picking area.

    Now you know how I feel when I try to get away. Where I live is even further than Norwich. Though I think Norwich is a nice place, good shops, large market. Maybe I’m biased, I went to UEA which is based in Norwich!

    Hi Slugsta, enjoy your Salisbury visit, hope all is as well as it can be.

    JM, add birthday wishes to dau from me, as well. Hope you are OK and fully fit. Is it France for the summer?
    Hope your fritillaries survived. Mine are very small this year. I’m guessing it was lack of water last year that’s affected then!

    Cheers all round!

     
  6. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,701
    Morning everyone,

    I hope you all had a lovely Easter x

    Spamar, I'm so glad you had the run of pain free days - and sorry that it didn't last xxx Being able to do the roast, though, it does sound like the exercises are helping - fingers crossed for even more of an improvement xxx

    Slugsta, the lunch sounds delish - I love tapas style food, only trouble is, I find I tend to eat more! Hope the visit to Salisbury went well, and your friend is OK.

    Easter, having started with a 'bang', with everyone home, very much went out with a whimper once they had all gone - such a contrast from a houseful to just OH and I rattling around! Not much time to brood, as Wednesday saw me off to London, for the annual big meeting, followed by a training day. Its easier - and quicker - to get to London than it is for me to get to South Wales, but it still makes for long days! Out of the house for 6.20, at the meeting for 10.15, then once that had finished, to be fair, the big boss arranged a lovely meal at a pizza place, right on the river, with a great view of the London Eye and The Shard - kicked myself for not bringing camera, had to be content with phone photos - definitely not the same! I chose to stay for the training, as we were told it was about mental health, and increasingly I'm finding myself with working with groups of young people who have mental health problems, as are many of my colleagues - none of us were too happy, however, to find the training had been changed to something very different - and we hadn't been told. Several left early, in disgust - the replacement training was interesting, but not as useful as the original course would have been, and I half wish I'd left too. Got home just after 9 on the Thursday night - shattered, but thankfully, the fibro is being quite good at the moment, so only mild aches to contend with.

    Slugsta - you asked about youngest. Not going particularly well, I'm afraid :( We had a strop session, for no real and valid reason that anyone could see, when the oldest two were home, leaving everyone walking on eggshells for several hours. Then, whilst I was away, she and OH had a fall out, again over her being so slovenly and laksidaisical about clearing up after herself - sparked this time by a combination of OH asking her to bring down the washing from her room (yes - again! Towels and clothes all over the floor) and her leaving her dinner plate, with chicken bones, just sat by the pc, where the doggys could reach them :mad: After the marathon journey to and from Norwich, she has taken on a massive number of hours in work, and I guess she is shattered - but that isn't our fault. To be fair to OH, he is really trying with her - calm, measured, trying so hard to be fair and reasonable - but as he says, if he dared to breathe loudly at the moment you can bet she would accuse him of either doing it to annoy her or doing it to 'have a go' ! I remember oldest clashing with her Dad at this age - but youngest takes it to a whole new level.

    Mil continues chugging along - still often fiesty, but long periods of calm, where she is happiest in her room, in her own company. Biggest concern is that her ability to walk seems to be definitely gone now, but she (obviously) forgets, and very occasionally tries to get up - surrounded by alarms and crash pads, with frequent checks by staff, I don't think there is much more can be done to keep her safe, she really doesn't want, or need at this point, anyone sitting with her in case she maybe, less than once a week at most (from what the staff say), tries to stand. So its just a case of hoping that if she does fall, it doesn't cause serious injury and/or pain. She is still eating, mainly food that she can manage with her fingers or a spoon, from what I can see, but eating a lot less than she used to. I feel that she is sort of slowly 'fading out' - but she is calm, hardly any agitation, no signs of pain or discomfort, her breathing is of course poor, but its not causing her distress. I think this is the very best we can hope for - a level of peace that she hasn't had for years, and please God, this will last now until the end, whenever that may be.

    We are back to cold and rain here now - such a contrast to last weekend - its currently bouncing down, and I have the heating on. Not planning on going anywhere today, just pootling round after a busy week, and probably being roped in to proof reading OH's college work (He is undergoing a lot of training, and doing a few extra qualifications through work at the moment).

    Hope you all have a lovely, stress free weekend - take care, and love to all xxxx
     
  7. Slugsta

    Slugsta Registered User

    Ann, thanks for the update. I'm very glad that MIL seems, mostly, calm - what a relief (for everyone) after the years of delusions and distress!

    Also glad to hear that the fibro is fairly quiet at the moment, I hope this allows you to spend some time doing the things you enjoy (((hugs))).

    Sorry to hear that your daughter is still being a PITA - 'sterkte'* as the Dutch say.

    Spamar, I'm sorry that your pain-free period was short lived but hope it is a sign that things are improving (((hugs)))

    Hope that everyone else is doing OK

    * The literal translation of this is 'strength' and it is used for anything from a sneeze right up to bereavement.
     
  8. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    5,030
    Female
    Chester
    Thanks for update Ann, I do know how quickly daughter's can flare - after a really lovely weekend mine was overtired on Tuesday morning and boom - and I mean boom. OH had a little reminder to both children to bring the bins up when they got home from school (2 recycling boxes a food bin and a wheelie bin every week) as invariably they are left. We made it clear to dau it wasn't just aimed at her but she exploded about it in the van(car issues) on the way to school. I had to pull over on the hard shoulder and then when near school she wanted me to drop her off, when I didn't she undid seatbelt opened door and got out, I had realised what was happening, we were on a road with vicious speed bumps anyway so I had near enough stopped when she got out. OH was less than impressed so she was firmly told Tue evening. What actually led to meltdown was being told she wasn't getting a lift to school the next day and was walking for the bus. Not sure what she expected.

    My mum is slowly deteriorating and I will update, but I find it upsetting so find it hard to put the words down.

    Party for dau tonight - no chance of a BBQ - as Ann said the weather is grim, back garden is waterlogged.
     
  9. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,918
    Suffolk
    Hope the party goes well, JM. Also hope the weather is calming down for everybody! Still windy here, but not had too much rain.
    Had lunch with a couple of friends yesterday, which was enjoyable. They were both late, I thought I’d got the date wrong!

    When I got home the first swallow was clinging to the electric wires and singing it’s heart out. Plus I heard one today as well. Does two swallows make a summer? If so, welcome to summer! Yeah, it windy and grey, but.......
     
  10. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    5,030
    Female
    Chester
    Back garden is now much worse than it was before, and rain hasn't let up.

    I did cycle in the rain yesterday but it was light and not too cold and not too windy. Heavy rain and very windy all day.

    Car was towed to a garage this morning. Couldn't get key to turn last Monday. Barrel lock has probably collapsed we are told, known fault with VAG group cars, it does have 147,000 miles on the clock so I really think time to replace, clutch and or gear box are dodgy as well. Might be 2 weeks before we get car back.
     
  11. 2jays

    2jays Registered User

    Jun 4, 2010
    11,589
    West Midlands
    Sorry to hear the teenage girls are causing such...... can’t find a polite term

    Ann glad mil seems more content
    JM Sorry to hear mum isn’t too great HUGS xx

    Our health - the 2 jays in this household - hasn’t been great. For one of us it’s the struggle to get over THE VIRUS which has needed 3 lots of anti bios and is looking like needing another lot or something else as a chest is sounding like an old wheezy spluttering boiler. For the other, more blood tests and a scan is needed

    Otherwise we are fine. :)
     
  12. Banjomansmate

    Banjomansmate Registered User

    Jan 13, 2019
    976
    Female
    Dorset

    I heard a cuckoo when walking the dogs in the forest this week.
     
  13. Slugsta

    Slugsta Registered User

    (((hugs))) for Jm and 2Js
     
  14. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,701
    Morning everyone x

    JM - I'm really sorry to hear your Mum isn't doing well. Sending {{{{{hugs}}}}, its so hard to see the deterioration happening xxx As for your dau's latest - Boy, some of that is so familiar! It sounds like you and your OH are doing what my OH and I are finding ourselves doing. Starting conversations with our dau that begin by us carefully explaining that we are not 'having a go', not 'being nasty', not 'picking on her' etc - only to have her respond by accusing us of those very things, and then - BOOM! The car stunt was totally unacceptable, and like you, we would have responded with a refusal to give a lift the next day. And we would 100% definitely had the same sort of melt down from dau because of it. I'm betting anything that somewhere in your dau's meltdown, she would have 'reminded' you that she is 'grown up now' - and all the while, tantrumming like a two year old. So incredibly frustrating :(

    We had more grief from our dau last night. She has decided to come on holiday with us, this coming September. It was agreed, when she said she wanted to come, that I would pay a contribution towards her share, for her 18th (We are also paying towards a gig she wants to go to, and have got her a new laptop, btw), but she would pay the rest. We have paid up front, for the holiday, she is supposed to pay us back. We explained at the time that we expected her to pay a reasonable amount, every month, until its clear. Bear in mind that she usually earns enough every month to pay for her share of the holiday, almost (and often more than) twice over. Her first payday, after we booked and paid, was just a couple of days later. She then said that she had committments for this month, made prior to us booking, which meant she would start paying the next month. We both held on to our temper, made it clear that she must pay a decent amount regularly, and that the paying us back must start from her next payday. We got the 'I said I would/stop having a go/you're just looking to start an argument' response, but we wouldn't bite, just kept calm and stuck to our guns. A week later, she came home with a new TV for her bedroom - apparently one of the 'comittments' she had been referring to! We fumed, but said nothing, just were very determined that from the next payday, she WOULD start paying. Last night (both also being aware that there seems to be some planning going on regarding yet another concert with her friends, that will no doubt cost quite a lot), OH reminded her that she had promised to pay a 'decent amount' off the holiday on her next payday, and asked her how much she intended to pay? Cue melt down. She didn't know, would have to see what she actually brought home, we knew she had worked 'loads of overtime' so she could pay, were we stupid? We know how many hours she is has done this week, etc, etc, etc. And then storming off to her room, shortly followed by a very rude response to OH when he let her know that a TV programme she wanted to see was coming on. I pulled her about it, she apologised - but not particularly meaning it - and later, after OH went to bed, she started on about how he was 'having a go' at her and 'trying to cause a row' - all because he asked her about paying HER share for the holiday. She got pretty short shrift from me, as you can imagine. When I went up to bed shortly after, OH was awake and actually quite upset. He said he was trying really hard to be reasonable, and was just so fed up with her accusing him of the same old things, every time he tried to have a conversation with her. I am currently really angry with her, because OH is 100% right - he is being far more reasonable than I think she deserves, while also trying to get her to stick to her promises and meet her responsibilities. And she just keeps 'kicking him in the teeth', as he said.

    So - I've decided. Not today - but tomorrow, when OH is in work, so he can't be 'accused' of anything - I am going to have a talk with dau. And I will tell her that unless she pays at least 1/3rd of what she owes, for the next three pay days, I will be cancelling her booking. That I will then give her the cash share that I'd promised to pay as part of her birthday gift - but that will be minus any cancellation fee. If there is any shortfall, she must pay me that - and if she doesn't, she can start cooking for herself and washing her own clothes, because I will not be doing it. I've tried the softly-softly approach, and if anything, she is seeing that as a weakness. I suspect this will cause the meltdown to end all meltdowns - but, I've had enough. So - if you all hear what sounds like WWIII breaking out in Wales tomorrow - well, you'll all know why!

    2jays, I'm so sorry to read that you and 1jay are having health issues at the moment. I have fingers and toes crossed, hoping that the next lot of ab's finally see off the virus, and that both scan and bloods return good results xxxxx

    Not seen any swallows here yet, Spamar (nor heard any cuckoo's , Banjomansmate) but in the last week, have had to 'rescue (or at least, try to rescue) two fledglings. First one was a very tiny blackbird chick, much too small to be out of the nest, found hopping about outside our back gate. No nearby trees/bushes that would hold a nest, so had obviously been out a while and moved away from the nest it had somehow fallen out of, but very exposed - both our two younger dogs went straight for it, and we had to intervene. Could hear parent blackbird tweeting madly nearby, so put it in our garden, in a spot where Mum/Dad could find it, but hopefully safe from our dogs and next doors cats. No sign of it several hours later, can only hope that parents encouraged it to somewhere safe. Second one was a young song thrush - which had fledged, but still young enough for parents to be probably still feeding and looking after it. That half flew into the house, shot behind the computor desk - and found the wall opening where the stop **** is! Eventually got it out, and returned it to the garden, and again, just hoping parents were able to continue caring for it. You know you can't interfere any more than the bare minimum to help - but boy, you wish you could!

    Rain still coming down here, but its a not as heavy, and nor is the wind so fierce, as it was yesterday. Such a change from last weekend, when we spent Sat on the beach and Sunday wandering a car boot sale in the sunshine. We have both the heating and our jumpers back on.

    Sending love to all, as always xxxx
     
  15. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    5,030
    Female
    Chester
    Sorry to hear you aren't well - I've been so busy with a 10 day long celebration of 18th birthday with the temper tantrums squeezed in I didn't get to send my hugs to you and 1jay.

    It took me a long time to get over the virus I had in Feb and whilst I am over it I am not back to anything like fully energy levels.

    No - she doesn't do that at all, and she did continually acknowledge she was wrong and she had got overtired and this is what had happened. The meltdown was because she was overtired and needed the extra 15 minutes sleep. Dealing with the fall out took until Friday night. We think the underlying cause is A level related stress and not having mentally dealt with the bullying she suffered properly. She knows there is nothing to get stressed about in total re A levels but she desperately wants perfect results. She tries to fit too much in and wants perfection in everything so instead of enjoying what she is doing everything adds to her stress - including fun things like craft and baking.

    She does do a fair bit of chores, and after eventually with much arguments when she did tidy her room admitted it made her feel better and has kept it tidy.

    She will be living in a flat of 10 next year so we are worried about her flaring with others as she always takes general comments as personal criticism and we had lots of talks last week about this.

    Dau's party went ok, no stress with food, where a year ago she would have got stressed about things and she made brownies very last minute and kept calm. The party was mainly our friends as we have little family so was a family style party of adults she has known, our friends and neighbours. She got a bit tetchy if she didn't open the door to them and knocked me and son back but overall it was good. One of my very good friends who dau also gets on with only got there at 10.45pm as she had been running round country after her sons (left home at 7am, left york at 6pm taking son to loughborough on way home). We have a lot of cake left.

    The walk to the bus stop wasn't as bad as she expected, and yesterday, when I was off work she walked so I could have a lie in (although only told me as I was getting ready to take her to bus stop - I did go back to bed).

    Yesterday was my birthday and I took the day off, forecast wasn't great but it did stay dry, got to cycle on summer bike, normal route to Alyn waters via Padeswood, some split off and did a longer route up a hill and back down. My friend (who was late to party) hadn't slept well as she was stressing about her mum, who is 83. There isn't much to be done until her mum is less able, but she has started worrying. Her mum is in relatively good health, but was in hospital for weeks (maybe 8) needing heart treatment - delays due to lack of drs, and so lost some mobility whilst stuck in bed - if hadn't had delays would only have been in hospital for a few days. She has just given up golf as it is too much, but is still active and major issues seem some time off, but friend is worrying still as it is a step down.

    As for my mum, we had her here for mother's day tea as we couldn't have her here on the Saturday, although I think I mentioned I took her cards round. She wasn't too bad, she played board games with the kids and enjoyed her meal with us.

    We then had her round for her birthday and every time we said happy birthday she said 'Oh, is it my birthday today, it must be the 9th April' and we confirmed it was, this was when I picked her up, we got her to my house, we brought her cake in and when I dropped her off. Even at Christmas this wouldn't have happened and I know she had a UTI in I think Feb so she could still improve a bit but I think this is downturn of illness.

    On dau's birthday, 21st April, dau wanted to see her grandma so we had her round for cake cutting, squeezed into a busy day. She struggled to stand up when I went to pick her up. She saw birthday banner on front dau and managed to remember it was dau's birthday when she first saw dau. We took her into garden as weather was so nice (hot Easter weekend) and by the time we produced cake she had forgotten whose birthday it was. Due to breeze I couldn't get candles to light outside, so we brought her back inside, which took some explaining. She enjoyed cake cutting and eating, but then I wanted to take her back and she didn't really want to leave. I think that without being inside playing board games there wasn't much to hold her interest and kids wanted to go in paddling pool etc so she felt she hadn't done much - but didn't know what. We persuaded her to go - had to rope OH in and then she really struggled to stand up again (using her frame both times).

    Dau had really wanted her round but agreed it hadn't really worked very well and that might be the last birthday we bring her round for. Last year when we sat in garden with my 50th cake she didn't understand fully and it didn't' work so I think we need to go in living room with her again. Last year she did enjoy being in the garden, I don't think she did this year.

    I haven't got any plans to bring her round for my birthday (yesterday). No idea when to fit it in, her tea is served at 5 so we try and be back with her by then, and she would be too tired in an evening. Kids are booked to see Endgame on Sat afternoon, Sunday son is fencing in Sheffield and Monday he is out with his mates (might be cinema again for a horror film - they've all seen endgame already) - last time they went to Sainsbury's for mother's day cards and then bowling alley to play on machines round the outlet village, and back to bowling alley. Very different to girls who would actually shop, whereas they are just a pack of aimless teenage lads - 11 of them this time I think.

    When I took mum food round last week, she was asleep on her bed, and woke up to see me and then went back to sleep, but then woke up as I left, and wanted me to stay, which isn't' usual and she just seemed really clingy. I didn't have time to stay as son was at fencing and had to pick him up. She is so deaf it is hard to have any conversation with her. She did thank me for taking her food. I think she sleeps alot.

    @Ann Mac - I hope Monday's chat with dau was productive, although I'm sure it will have come with a few tantrums.
     
  16. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,918
    Suffolk
    Hi JM, nice catch up!
    Is your weather as bad as it is in Yorkshire? ( I’m watching T de Y) and the rain is hammering down. There has been a few showers here this morning ( badly needed) but nothing much!

    Hope you had as good a birthday as possible, not too much cake!

    Your dau seems to be settling down, albeit slowly. Long may it continue! I was telling my stepdau about your dau and AnnMacs dau, she rolled her eyes and said ‘tell me about it!’ Her dau will to 20 later this year.
    Next grandau seems to be having a wonderful time at Imperial. Has learnt to scuba dive and is going to Bali in the summer to get some diving practice! She’s also doing the Three Peaks in July , more sponsorship money! Her younger sister is at college, enjoying it, and has just started driving. I just pity the family’s coffers!

    Hope things continue to improve.
     
  17. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    5,030
    Female
    Chester
    light rain this morning - dry and sunny now and washing on the line

    freezer part way through defrost - could barely open drawers it had got that bad!

    Kids have dentist later and I'm not sure it'll be done in time!
     
  18. Slugsta

    Slugsta Registered User

    Belated Happy Birthday wishes Jm. I'm sorry you are seeing a downturn in your mum's condition :(

    My son is currently in the air on the way to Vancouver, he is visiting some uni friends who have moved there.
     
  19. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,701
    #9899 Ann Mac, May 3, 2019
    Last edited: May 3, 2019
    Morning everyone,

    JM, it sounds like your dau is really starting to settle - I'm so pleased for you (and her). One of the (few) plusses to mine not doing uni is at least I don't have to wory about how she would get on with housemates - not so much the tantrums, they seemed reserved for family - but just in terms of living with others, when she is such a messy so and so. She is still looking at going to the local uni in September, to do a 4 year foundation in sports rehab and injury management, but she will live at home (for the first year at least), so fingers crossed IF she goes, that extra 12 months will bring about some improvement (and pigs might fly, too!)

    Sorry to read that you are seeing a deterioration with your Mum - we all know how hard that is, sadly. Making the decision not to include Mil in family stuff was so hard, because since the children were born, there wasn't one birthday, Christmas, sports day, school fair or play or whatever, that she wasn't part of. Oldests BA grad was the last 'big' ocasion - and if you all remember, that was a nightmare - and if I'm honest, I knew deep down she wouldn't cope - at the time, though, it just felt so wrong not to have her there. After that, although we did try a couple of seaside days, for example, we stopped including her in events and trips out. Hard to get your head round having to make that decision though.

    Sounds like your grandau is having a ball at uni, Spamar :)

    Hope your son has a fab time in Vancouver, Slugsta x

    2jays, hope the Jay family are recovering well, and that the scan and tests went OK? xxx

    I went to visit Mil yesterday, her funds needed topping up and once again, I hadn't been for over a week. The manager, Nurse L, collard me on the way in to have a chat. First bit of news - the horrible, nasty HBM is retiring this month - Thank GOD! Second bit of news - Mils 1-1 now down to 2 hours a day, and going really well :D It may even be possible to remove it completely. Nurse L assured me that she had a contract with the CHC and Health board that states very clearly that the care can be reinstated immediately if a need develops - no meetings, no arguing, its left to the discretion of the home, they just add the hours and bill CHC. I've never heard of any agreement like that before, and whilst I am glad that we have that safety net, I am not convinced it would actually be that simple - not going on past experiences!

    We talked about how Mil is 'winding down', very slowly it seems, but also very surely. Her breathing is pretty raspy all the time now, to be expected with the COPD, and her inhaler has had to be changed to one that delivers the meds via a mask, as she can no longer manage to inhale on request - the frequency of it being give has been increased, to try and alleviate any distress and discomfort. Nurse L commented that her colour is now always 'bad' - very pale and almost grey most of the time. Her speech has really gone downhill - you can make perhaps one sentence in 3 or 4. And even the little 'walks' - with staff either side, just across the room or up and down the corridor - have stopped. She doesn't have the breath or the energy, bless her - though, it doesn't seem to bother her at all that she can't get up, and it's only once in a 'blue moon' that she will try to. We both said pretty much the same thing - that while she is so calm, for the first time in years, it would be such a blessing if she just quietly slipped away, before the physical issues start to cause her any severe misery. Oh - she's still 'fiesty', staff can expect her to throw her drink, squeeze and twist their fingers, sometimes swing her 'doll' by the legs and clobber them, and isn't is 'amazing', said Nurse L, that when she gets cross and swears like a trouper, her speech is fantastically clear! But these incidents are very short lived, forgotten in seconds, with no residual upset for her.

    My overwhelming feeling about this chat was, I have to admit, relief and gratitude that Mil is finally experiencing some level of peace and contentment. Very little sadness that she is deteriorating physically, winding down as Nurse L said- and no guilt that I feel like this, because the contentment and peace that this stage has brought her far outweighs any sadness that we might lose her soon.

    I spent just over an hour with Mil. She didn't know my name, but was pretty sure that 'Your mum is the same as my mum' - and when I asked did that mean we were sisters?, she clapped her hands, nodded and beamed at me. She was looking through the big album/scrapbook that the kids put together for her years and years ago. Completely blew me away by naming all the kids correctly, and naming OH (though she said OH was her brother, and the kids were 'Katherine's children'). At the section that has photographs of my son, from a few months old through to when he was 18, she named him and very clearly told me he looks like her (when she was little, she added) and then said "and he looks like S*** (her son) too" - she was absolutely right!

    The shouts for 'help' are pretty continuous at times, but only once or twice was she able to say why she wanted help (she was tired, she said, and she wanted to know if she would have 'someone here'). No real signs of distress - and a few times , when she shouted 'help' I responded by singing the next line of the Beatles song - 'I need somebody', which she found funny - in fact on one occasion, she shouted 'help' - then tried to sing the line herself. Very, very affectionate - holding and kissing my hand (she only tried to hurt me 4 or 5 times :rolleyes: ) and telling me 'I do love you'. Only little niggle was her being served dinner - and seeing that it hadn't been cut up for her. She won't wear dentures, her jaw is still affected by the TD, so there are continuous movements that impact not only on her speech, but, I would think, her ability to eat some foods. They gave her mash, mashed carrots and swede, some mixed veg and gravy - and 4 pretty big chunks of liver. She can barely manage a fork, certainly can't use a knife to cut chunks of meat and she can't chew them if they are not cut up. Both OH and I have mentioned this before to staff - aside from worry about choking, she gives up if left to herself, so we are concerned that she goes hungry. She struggled to get a piece of meat on her fork, using her fingers - and I have to admit, I stepped in and stopped her putting the whole thing in her mouth. I cut the meat up into tiny pieces, and mixed it with the mash and veg. After two forkfulls, she was struggling with actually getting the food on the fork and gave up. But when I asked if she would like me to help, she said 'Yes Please!' - and then proceded to eat 3/4 of the meal, because I was feeding her, with obvious enjoyment. I asked the staff who turned up with her pud, just 5 minutes after they had given her the mains, to please hold it back - because again, both OH and I have seen her abandon the main meal, in favour of her pud, simply because its invariably easier for her to eat something soft with a spoon. I need to have a wee chat with Nurse L and get the help she needs written up in her care plan and implemented.

    No fuss when I left - she actually said, when I made moves to leave "Are you going for your dinner break?" - I agreed I was and got a cheery 'Bye' in response. Again, the sadness at her losing her connection to us to the extent that she isn't at all bothered when we leave is more than balanced out by the lack of distress - just like the relief at the lack of the horrible agitation more than balances out knowing that she is deteriorating, health wise.

    Busy day today, morning meetings followed by an afternoon session with 14 young people at a conservation site. Only realised yesterday that I have a 3 day weekend coming up, because of the BH on Monday :D Housework done this morning, and I've also bought the tickets for youngests last show with her theatregroup - they are performing at the Royal Albert Hall in June. End of an era - my girls have been involved with that group since it opened 14 years ago! But at nearly 18, this is the last season she can attend for.

    Hoping all of you are OK, and as always, sending love xxxx
     
  20. Slugsta

    Slugsta Registered User

    Ann, it must be such a huge relief to see MIL so much more clam and settled. Those long years of distress will be seared on your memory but I hope that, in time, you will be able to remember her as she was - your kind, funny, loving friend as well as MIL.

    Yes, I recognise the hope that MIL will now slip away quietly before things get worse. After we left Mum at the end of her 90th birthday party I said 'If this was a TV soap, she would slip away quietly tonight, still smiling'.

    I suspect that your daughter would be much better than you fear living away from home. Partly because I don't think we ever really grow up until we leave home and partly because house-mates simply wouldn't put up with the kind of behaviour you endure!

    I broke my specs on Monday morning so am currently wearing an old pair. They are better than nothing but the prescription has changed since I had these and I am finding reading/close work difficult. I have tried a pair of OH's cheap readers, but they aren't any better. I have ordered a new pair but will have to wait another 10 days or so for them to arrive. That's £370 I wasn't expecting to spend! :eek:
     

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