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So bizarre !

jugglingmum

Registered User
Jan 5, 2014
5,859
Chester
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. :)
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.

she would have 'reminded' you that she is 'grown up now' - and all the while, tantruming like a two year old
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.
 

Spamar

Registered User
Oct 5, 2013
7,475
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.
 

jugglingmum

Registered User
Jan 5, 2014
5,859
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!
 

Slugsta

Registered User
Aug 25, 2015
2,760
South coast of England
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.
 

Ann Mac

Registered User
Oct 17, 2013
3,693
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
 
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Slugsta

Registered User
Aug 25, 2015
2,760
South coast of England
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:
 

Spamar

Registered User
Oct 5, 2013
7,475
Suffolk
Ouch, Slugsta! I darent add up all the money I’ve spent on glasses over the years. These days it’s varifocals. Even more expensive!

I agree about changing when you leave home. Seen it in the grandkids as well. And certainly I did!

Ann, pleased about mils changes, at least it’s not so bad visiting her. I always reckon that was the last thing OH did for me - not hang around in a CH! Bless him.

The idea was to do paperwork this morning! As it’s 11:00, I’d better try to do something!

Good wishes to all!
 

tflett99

New member
May 5, 2019
1
Mils delusions/confabulations are getting more and more extreme - though Thank god, she isn't finding them upsetting and they are not stressing her out at all. But the sheer 'strangeness' and the absolute lack of logic behind them is breathtaking.

Just yesterday, we had her asking when her next exercise session was - you know, the one where she and the dog go to the gym!

We had her frantically looking for the 'Christmas Mobile phone' she had bought - she showed it to me, she said - the red one, that she is allowed to use to phone her brother at Christmas.

Last night she leapt out of her seat to go and 'clean that room'. What room? The one upstairs, where we play ten pin bowling, apparently - oldest daughter caught that one - I walked in to find Mil demanding that daughter accompany her up the stairs so she could SHOW her the bowling alley, and Mil then insisted that I went too. She went in every bed room, bathroom too - even opened the landing cupboard - but wasn't that worried when it couldn't be found.

This morning, she is worried about getting to her job at the theatre on time - the theatre where she wears the blue dress on the stage and there are horses :confused:

Because she isn't upset, then it doesn't worry or upset me, and its not stressful to deal with - but I am seriously puzzled by where on earth these odd ideas come from!
This happens alot with my dad who is 91 and is also a diabetic. Its really random, and seems harmless, but really weird. I have learned over time that the best way to deal with this is not to argue. you will NOT win. Instead, acknowledge what they say, but vaguely. IE: dad told me that the picture on the wall was stretching up.its now about 4 feet tall. My response is, as i look at the wall...hmm thats pretty strange. I then quickly change the subject or redirect to a different topic or activity. He rarely mentions it again. Its just a tip, but it works, and is so much more effective than arguin. Hope this helps.
 

Slugsta

Registered User
Aug 25, 2015
2,760
South coast of England
Spamar, I have been wearing varifocals for some years. I love not having to wonder where my specs are (cos they are on my nose) but I don't love it when the times come to pay for them!
 

Spamar

Registered User
Oct 5, 2013
7,475
Suffolk
Ages for varifocals. What I did used to lose was sunglasses! No need for that now, at least! Have worn glasses since I was 7, they’re just getting more complicated and more expensive!
 

Ann Mac

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

My sympathies on the cost of the new glasses, Slugsta - I've scratched the lens on mine (not badly, thankfully) and am dreading the cost when I get around to replacing them. At least mine aren't varifocals, though - so expensive!

I saw my older two change a lot when they left home for uni, too Spamar. Not so much with oldest - she was pretty responsible anyway when she left - for her the difference was in money management - she had to learn it pretty quickly, and to be fair, we only bailed her out once, in her final year, when she was swamped with books and other heavy costs when heading towards her exams. Son - well, he learned to do something that I'd never been able to get through to him, though I had tried - he learned to cook, and to cook with fresh ingredients at that. I'll never forget the shock when he came home that first Christmas and casually mentioned that he was going to cook us a meal, and listed vegetables and other ingredients that he previously wouldn't have touched. But, there were no concerns about them being slovenly to live with, or temper tantrums, unlike with youngest. She is currently filling out the application for the local uni - late, but she has been to see them, had an interview, and in light of her experience has been told she will be offered a place on the foundation course she wants - that's if she gets the application in! Its been sitting, open, on the computor for 2 days now, still not finished!

She took my ultimation, regarding paying for her share of the holiday in reasonable installments, far more calmly that I expected, and although she initially suggested a very silly, low amount for paying for her share, she agreed to a more sensible amount, easily enough. Which was a relief. Short lived, as that was followed by a strop over her room - once again, missing towels that turned up along with a small mountain of other washing, on her bedroom floor. But, checking her room at least once a week - although she objects to this with fury - means that it can't deteriorate to the state it was in before, and all I can do is keep it up and hope that keeping it decent eventually becomes a routine and habit for her.


This happens alot with my dad who is 91 and is also a diabetic. Its really random, and seems harmless, but really weird. I have learned over time that the best way to deal with this is not to argue. you will NOT win. Instead, acknowledge what they say, but vaguely. IE: dad told me that the picture on the wall was stretching up.its now about 4 feet tall. My response is, as i look at the wall...hmm thats pretty strange. I then quickly change the subject or redirect to a different topic or activity. He rarely mentions it again. Its just a tip, but it works, and is so much more effective than arguin. Hope this helps.
Hi @tflett99 and welcome to TP :) Oh, I agree 100% about agreeing to avoid rows and upset. Trouble is, responding like that with Mil could be problamatic. Unfortunately, until very recently her dementia was driven by paranoia and delusions that left her angry, agitated, terrified or confrontational (or a combination of all those reactions). The bizarre itself, I had no problem with - it would have been easy enough to go along with her claims that she knew Terry Wogan personally or performed nightly on a stage with her co-star, the horse. Not so easy when she then starts demanding that you phone Terrys' parents, or that you open the front door so she can catch a bus to the theatre she thinks she works in. And when her dementia is such that she won't/can't be distracted by anything you say, when 'I'll phone later' or 'I've lost their number', or anything else you try, leads instantly to melt down and accusations of lying or being cruel, her then banging on doors and windows and attempting to get the phone so she can call the police - well then, its a whole different ball game, sadly. Compassionate communication - agreeing with a pwd, entering their reality, distraction, not contradicting and love lies - must be fantastic when it works, and I am so glad for your sake that it works with your Dad - but there are a sizable number of pwds for whom it doesn't work, who are resistant to everything it entails. And there are some situations where you can't agree and can't avoid contradicting because it would fuel the delusions and hallucinations. None of us could agree with her when she insisted that her son (My husband) was her husband, for example - because to do that led to extremely innapropriate behaviour, her demanding that (as I must be the fancy woman) that he throw me out of the house, right now and when he obviously couldn't/wouldn't do that, it would lead to screaming meltdowns where she was in danger of hurting herself. Going along with her would have meant us living 24/7 having to avoid any normal interaction, and having her inviting him to 'come to bed' or trying to kiss or touch him in a way that just couldn't be accepted. That delusion (only one of several recurring delusions the poor woman suffered) eventually led to her physically attacking me, and that's what led to her going into residential care. Over the last 6 years, I've had Community Psychiatric Nurses, day care staff, social workers, support staff, nurses, doctors, consultants, and staff from the EMI nursing home she now lives in, advise that we try distraction and CC, and assure us that it will help - only to come back to me, after they have had actual experience with Mil, and tell me in amazement that it 'doesn't work' with her. And there are lovely carers on this thread, and across TP who will confirm that they have experienced either that level of resistance and/or behaviours/fixations that you just can't go along with, sadly x

OH has been to see Mil, and again, food served without it being cut up - so a visit to talk with Nurse L on the horizon - just hoping it doesn't morph into another battle, like getting them to use her cushions did!

Very quiet BH weekend here, mainly due to the cold and rain making the prospect of trips out unattractive. Its actually been nice just to chill. I've pootled round the house, read books and basically been pretty lazy for me. Makes a nice change!

Hope all of you are having a good BH weekend, and sending love to you all xxxx
 

Ann Mac

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

Hope everyone is OK?

Just a brief pop in. Mil is still chugging along. I visited on Friday, she was in her room, quite happy watching the TV. No idea who I was 'You're a cousin or something, aren't you?' she asked. I agreed I was, gave her my name - and she then called me Phyllis for the rest of the visit :D Not very chatty, but very chilled, and not really bothered by me being there. Lunch was served whilst I was there - a rather large beef burger, on a bread roll, with fried onions and chips. She couldn't manage the burger, even with the bread removed and the meat cut up - a few of the chips she more or less sucked to death, then gave up. She clearly told me NO when I offered to help her get the chips from the plate to her mouth. And then, after about 35 minutes, she very clearly told me 'I want to be by myself' - so, I got a kiss goodbye, and I went.

I stopped on the way out to speak to the manager about her food. They are waiting for an assessment before moving her to a soft diet - they can't change her to soft food until the assessment, but they didn't know when it would be! I asked could her food at least be cut up into very small pieces, untill the assessment took place - hopefully, they will listen - and hopefully, poor Mil won't flipping choke whilst they are waiting for the assessment!

Busy, as always - last week saw me single handedly decorating the upstairs bathrrom - took me all day, it looks great, but boy - did I pay afterwards! Saturday, I did a 14.5 hour day for work, helping out at a National event. I did get it in writing beforehand that I can take the time back, at my convenience. Slightly shocked and disgusted by an email sent out after the event, to many of us who helped out, informing us that we could log the hours as 'voluntary' if we liked! Er - no - I work, I get compensated for it - end of!

I hope everyone is OK, thinking about you all and sending love as always xxxxx
 

2jays

Registered User
Jun 4, 2010
11,598
West Midlands
Gold star for decorating bathroom. When we achieve something on our own it really makes it special doesn’t it.

Gentle slapped leg for doing it on your own :)

Still having to battle then Ann?
If it’s not battling for MIL, it’s also to do with work. So frustrating!!

Mind you, if it’s “only” to do with MIL’s diet, what a relief you must feel after the war you have been through for her..... but it’s sad isn’t it when the need to battle so hard has lessened, because the person is also being more and more lost - if you know what I mean. I know I had a sigh of relief hearing that she seems more content, but sad too

I’m still awaiting results. I have an appointment with GP next week, the earliest I could get when booking 5 weeks ago. I’m feeling better than I was. I still get swollen glands, randomly, without a temperature, that’s when I feel very washed out, but I am able to function better than I have been.

1jay has had his 4th lot of anti bios in the last 6 weeks. These seem to be working, but he has to take time to feel really better as he’s been ill since January. He’s frustrated that it’s taking the time it is, and wipes himself out of energy regularly. But these times are getting less and less :)

So all in all the 2jays are looking like they are on the up health wise. Decided we would be pushing our luck going away to foreign, so have decided to spend short times away looking around the uk.

Love to you Ann. Don’t let the work monsters grind you down :D

Love to all others reading. Hoping today goes as well as it can do xx
 

CandyCrushed

New member
Apr 6, 2019
9
Hello Ann,
Hello JM, Slugsta, Spamar, Amy, 2jays and everyone who posts here.
I hope that you won't mind me making my first post on your thread....... I joined a month or so ago, and have read right though here.
I just wanted to thank you all for being so frank, and open, and inclusive. I feel that I have a much better (and realistic?) insight into my family's situation..... I really hope so.
Perhaps I can help my mum (pwd 82) and Stepdad (carer 89) in a much more compassionate and understanding way thanks to your generosity.

My love and thanks to you and yours.
Candy
 

Moggymad

Registered User
May 12, 2017
500
Morning all,

I stopped on the way out to speak to the manager about her food. They are waiting for an assessment before moving her to a soft diet - they can't change her to soft food until the assessment, but they didn't know when it would be! I asked could her food at least be cut up into very small pieces, untill the assessment took place - hopefully, they will listen - and hopefully, poor Mil won't flipping choke whilst they are waiting for the assessment!
Hi @Ann Mac we had similar issues with my mum who is now on a purée diet. However I was told if she needed purée then she should also have thickened drinks & an assessment was needed to determine what thickness she needed. There is also a long wait for this here too. I was told 6 months! The manager agreed to put mum on soft food to start with & she now has either soft or purée & as far as I know no one has assessed her. It just seems common sense to do this when it is necessary. Mums swallow is fine it's the ability to empty her mouth that's the problem, getting the food in position to swallow. Mum lost quite a bit of weight over the months which has now stopped with the purée or soft food. Still manages ok with her normal drinks but does cough a bit sometimes. Surely it's crucial for the care/nursing homes to have some flexibility in the type of food they can provide for their residents without having to wait months for assessments.
 

Ann Mac

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

2jays, I'm so glad that the Jay household seem to be finally getting better! Its about time, you guys have had such a rough ride recently. Hopefully it won't be long before you can head off to Fuerteventura or Landsagrotty again. Its the thought of getting into that lovely sunshine that keeps me going (only 123 days to go!)

When I stop and think, it really hits how bitter-sweet it is that we are so happy that Mil is finally having a really calm and content phase, because acheiving that has been brought about by a pretty big deterioration in her health and abilities. But thats the nature of this foul disease, I guess. I can't quite believe that this calm phase will last - though God knows, I am hoping and wishing and have everything crossed that it will - and being honest, a big part of me is thinking it would be so kind if she could drift away in her sleep, now, whilst she is so peaceful. If I have to fight to sort the food issue - well, that doesn't seem so daunting now, not compared to what we have had to fight before. Plus, because she is so calm, in a very odd way, it calms us, I think. It makes dealing with any minor issues less fraught, we are all just so relieved that the agitation is nearly non-existant, and its almost like while she is calm and content, we can be too - if that makes sense? I know its made a big difference to OH - he is visiting more than he has ever done, which is lovely, and I know he feels happier about being comfortable being able to do that. Its also - and this is quite selfish - taken a lot of pressure off me. I'm OK with going once a week, and don't get too stressed even if I have to miss the odd week. Even youngest has been to see her, after a break of around a year, and though she was clearly shocked by the physical deterioration, the lack of anger, fear and misery meant she was happy to be with her Nana again.

I forgot to say, about when I saw her on Friday - for the first time in literally months, Mil didn't make any attempt at all to hurt me! No attempts to slap or pinch, she didn't even try to squeeze or twist my fingers. And it was only after I left that I realised this. OH reported that she didn't try to hurt him when he was there on Monday, either.

Welcome to TP, @CandyCrushed - though I'm sad for you that you have had to find us. I am so glad that you think the posts on this thread may help you - the support from all the lovely people on here has kept me going at times when I was at my wits end. I hope you are able to access lots of support for your Mum and Dad, and I hope TP can keep you going, the way its kept me going, as your journey continues xxx Feel free to post here, or wherever, as you need - I can guarantee that someone (probably several someones) will quickly jump in to help, or even just listen xxxx

Hiya @Moggymad - even if they would just ensure that the food chosen for her (there are usually a choice or at least two, often 3 options, at each meal) was more suitable, and - most importantly - cut up quite finally, it would be better. Not sure why they say they would need an assessment before they could at least do that? The liver from the previous visit was actually quite tender, and once it was chopped into tiny pieces, with help, she really enjoyed it. The burger, I thought, was a joke. No way can she manage a large bread roll, she can't use a knife now, struggles to even scoop with a fork and bless her, no way will she wear her dentures either. Chunks of bread seem to be near impossible to 'gum' into submission! From what the manager said, they have someone (visiting regularly, I think) who is qualified to do the assessment - its just a case of this person getting round to Mil! I'm planning on a visit at either lunch or tea time tomorrow - if she is served a meal she obviously can't eat again, I thought I might just take it down to the office, and very politely ask how Mil is supposed to eat it? She has always loved her food, and still enjoys it - when its served to her in a way she can actually manage to eat! She certainly tucked into the liver the other week, once I'd chopped and reduced it to a point where she could manage to eat it!

OH and I are still busy getting stuck into house and garden when we have time! Hall, stairs and landing are next on the house list - though quite when that will be, I don't know! I can't reach to do the paintwork on the stairs, so 6ft 4" OH is needed for that bit - but he is flat out on his latest garden project at the moment. Building a pizza oven and putting in an outdoor kitchen type area! The decking at the bottom of the garden needed replacing (nearly 16 years that's been down), and that was the plan - just to replace that. Then he saw something about how easy it is to make your own Pizza oven, and decided to replace the decking with pavers and make said pizza oven himself - so out he went, bought one of the big inflatable gym balls, and spent several days constructng said oven, which is now nearly ready for final process of firing it. I have to admit, it looks extremely professional! And his plan has expanded to add a sink and a canopy, outdoor lighting, space for the barbie and fences around that area . . . Oh, and he has added a jacuzzi to the patio area by the house too! By the time he has finished, it will be more comfortable in the garden than the flipping house!

Youngest still hasn't completed the uni application and there are regular weekly mini-meltdonws over her bedroom - though we are making her (reluctantly) keep on top of it. Its her 18th on Friday, and she has plans for a meal with her mates, followed by a club in Chester! Oldest is quite happy in Coventry and spending a lot of time helping her best friend prepare for her wedding in October (oldest is chief bridesmaid); son is in the middle of moving house (or trying to - new landlords agency is proving to be totally incompetent at the moment!). Son is also now into his 3rd week of prison officer training - and loving it! All furry family members are doing well, even 17 year old Busta dog, who is still plodding on - slowly, nearly blind and deaf, but still eating, wanting (short) walks, enjoying cuddles and wagging his tail. The garden is full of baby birds at the moment, which is bringing me a huge amount of pleasure too - especially the baby bluetits, who I've yet to get a decent pic of, but who are soooooo cute!

@Slugsta , @Spamar @jugglingmum @Amy in the US @canary and everyone else - hope you are all OK - sending love to you all, as always xxxxx
 

canary

Registered User
Feb 25, 2014
13,418
South coast
Yes, it is indeed bittersweet that your MIL is more peaceful now, I do hope you can get her food sorted out. Why is everything such a struggle in our lives?

Your garden sounds lovely. Brick built barbie? Kitchenette area with sink and canopy?! Jacuzzi on the patio?!!! Does your OH do commission? I could certainly do with someone like that around here - the best OH can do now is remember where the switch to turn on the water feature is located!
 

Jaded'n'faded

Registered User
Jan 23, 2019
893
High Peak
Dear Ann, reading with interest, as ever... it's all go at your place!

However.... I am intrigued by:

'so out he went, bought one of the big inflatable gym balls, and spent several days constructng said oven...'

OK, I can't be the only one struggling to work out where exactly an inflatable gym ball fits in a pizza oven - please tell us more!
 

jugglingmum

Registered User
Jan 5, 2014
5,859
Chester
Not time to update but I agree with @Jaded'n'faded - I did reread several times to try and work it out

Maybe he used it as a former to shape the oven over and then burst / removed it when the bricks were set.

I have been to London and Sheffield last 2 weekends, and can confirm that I well and truly have 2 teenagers in the house. Fun, not.