So bizarre !

[jugglingmum]

Hoping no news from Ann is good news.

Visited mum today and she said Happy Birthday as I walked in the door (it is on 1 May) and that she was so pleased I had come to help her sort out cards. She hasn't remembered before hand the last couple of years, she does seem to be having a really good spell. She had bought me a card, and my nephew, his is on 2nd May, I did have a card with me for her to sign, but used the one she had bought (from display in reception of building, made by card making activity group). So talked her through writing nephew's card, including address on envelope, and then talked her through writing mine I am still smiling as she didn't register my birthday 2 years ago, and last year she made a sort of card out of a piece of paper. She has settled so well into where she lives that she is more with it in a lot of ways.

Had other good news today, was asked to go into school to see son's head of year and literacy teacher (he is in year 6 in a 3 form intake primary). After the battles I have detailed on here, when we thought we had got no where, she has worked with him in class, and said how much he had improved. I used my annual leave to spend hours over the Easter hols working with him, had planned to be off but day trips out not school work. So pleased. She has started working with him on laptop today and thinks that is the way forward, and if it makes good progress will make this recommendation to the high school. So pleased, have been fighting this battle for 4 years, and I know high school are supportive so if he goes there with a report at this level he will get the help he needs, which should lead to getting what he deserves at GCSE, A level and then onto uni. Lots more work to go, SATS have proved very helpful to us with the new SPAG (spelling punctuation and grammar) as forced school to listen to us, rather than keep fobbing us off. Don't actually care about SATS but he needs to be able to write when he gets to high school.

 

[Ann Mac]

Thanks everyone,

Oh Spamar - losing a camera like that would be enough to reduce me to tears! What an awful shame

JM, How lovely that your Mum remembered And its great to read how well your son is now doing - worth all the hard work in the end, though I do remember how hard and frustrating it was to battle the school and LA to get help for my son when we suspected dyslexia. Well done you for fighting so hard for him - as you say, it really is overwhelming to take on an 'institution' like a school, be it over bullying or educational aspects. With my daughter, she is yet again dealing with a teacher who prioritises his social networking over actually teaching - kids told to 'read a script quietly' for a whole lesson, whilst he supposedly worked with an older class - but, instead, he was spotted apparently 'ever so busy' on his Ipad - on twitter!

Red - thank you - that's a pretty good point by point plan, and has helped me sort steps in my head. Its hard at the moment to know which way to turn and what to do first!

The job application will go in next week. No guarantee I will get it, apparently my biggest obsticle will be that I may be considered 'over qualified' So, just have to try and hope for the best.

Mil - er, where to start?. Again feel we are being given somewhat conflicting info. Staff nurse says biggest issue is with needing a lot of attention to be redirected and reassured, but no issues with behaviours otherwise. OT we saw yesterday made several references to how difficult she is, and when we went in, Mil was sporting a huge bruise on the back of her right hand, which is pretty typical of her having banged like crazy on a door or window - seen it so many times before. Yet again, nearly half the visit spent tracking down her belongings, and one nurse reported that the afternoon before, they spotted a 'coated figure, carrying a large bag and dragging a suitcase' head off towards the doors, looking like 'she was off to flipping Benidorm'! Mil, of course and by just the odd comment made here and there, it sounded like they had had a bit of a time of it with her. We would have made further enquiries, but for some reason, a lot of the patients were really agitated when we went in after lunch, and the staff (even though there are a lot of them) really had their hands full. One chap was tottering round grabbing on to people he passed with a grip like grim death and it took intervention from others to get him to let go - and I know, 'cos he got me at one point! Another lady was shouting for Kenneth - and asking for a defibulator, of all things, too! A lot of others were up and down and calling out, and it was all rather chaotic .

OT wants more paperwork doing, apparently with a view to implementing some new idea about activities that will distract Mil at home. I'm probably being too negative, but firstly it struck me that the suggestions they were making were incredibly 'labour intensive' for me, leaving me wondering how on a weekend for example, I would be able to acomplish anything other than sit by Mil and spend every second responding to her needs - and I mean every second! Without any consideration to any sort of a break or time to do anything else. Secondly, despite me outlining several times the issues we have with Mil and the kitchen, a lot of the activities/intervention stratagies involved her doing things actually in the kitchen, and I did feel that the OT's were so enamoured and enthusiatic about this new 'idea' that concerns that I have about safety and minor issues like 'am I supposed to just focus on Mil for 12 or 13 hours at a stretch and do nothing else?' were sort of brushed aside

I'm not going in today to visit, OH at work and as well as doing the usual runs for youngests theatre rehearsals, I also have son and his GF unexpectedly (but happily) home for the weekend - dau has rehearsals this morning, but planning on taking us all off for an afternoon at an local nature reserve this afternoon, for a ramble with the dogs - if the weather holds, that is. Had two days now of showers of everything from heavy snow, to hail, to rain!

Hope you are all OK - have a good day of you can xxxx

 

[angelface]

Hi Ann,

I am still in awe of the way that you cope with things!

I do remember this 'conflicting information 'thing in hospital. I think there should be a named key worker.If there is one,they might be more accurate with the info.
Staff always seem to want to put a positive slant on the situation,but not helpful to my mind.

About the OT - can you agree to her plan enthusiastically, but point out that the OT will have to arrange the funding and a person to do all this.

And in the meantime -as everyone else says -see if you can rest a bit. Easier said than done I know.

 

[RedLou]

JM - happy for you re: your mum and really happy, too, re: your son's progress and the necessary attention.

Ann - just tell them you're not doing it. Tell them you are not a professional OT - you are a working mum. Kill it stone dead. The more time they invest in it, the more they think it is a magic solution. You want her meds sorted, not a work-plan for you from people who manage her in a controlled environment with plenty of manpower and the end of the shift to look forward to. --Ha -- just seen angel's post - great idea!! Glad you not going in today and planning some family time. Enjoy yourself. Sun here -- fingers crossed it holds.

I find that I am emerging from the mini-depression I've been languishing in for the past year. Will keep coming into this thread but otherwise avoiding TP more. Want to look forward, not back now - perhaps a sign I've worked through some issues, or perhaps it's more true to say I have realised there are no answers to the questions, no balm for the pain of rejection (I'm not just talking about the dementia-induced accusations but a whole string of behaviour I always ignored) and no making my father the ideal wise paternal figure rather than the odd, fond yet insecure and self-centred person he was. & no getting away from the fact he favoured my brother, who was most like my mother and the opposite of him in terms of confidence. Ho-hum. C'est la vie.

 

[cragmaid]

Ann, I think that you and OH need to put it in writing as well as making it clear verbally, that if this plan of the OT is to come to fruition, they will need to arrange funding and provide a full time care worker to be with MIL at home, since both OH and you will be working outside the home. Otherwise they will continue expecting you to carry the burden alone.
I am full of admiration for you, having managed this situation up till now, but seriously, having tasted home without MIL, can you not consider full time residential care for her now? Even if, as is likely this means her having to move away. Until OH gets his PO job, you cannot manage even a part time job and a full time caring role and maintain your sanity.

 

[Katrine]

I understand the OT focusing on MIL's needs. However, there is an underlying assumption that you can all learn to get along happily and safely once she's had her meds tweaked. "Hand her over to us, you're obviously not doing it right. We'll get her into a calm routine, then teach you how to look after her properly." After a day of supervised purposive activity, MIL will eat her tea and trot off to bed for a night of quiet uninterrupted sleep.

"Ann, I think that you and OH need to put it in writing as well as making it clear verbally, that if this plan of the OT is to come to fruition, they will need to arrange funding and provide a full time care worker to be with MIL at home, since both OH and you will be working outside the home. Otherwise they will continue expecting you to carry the burden alone." cragmaid

"Ann - just tell them you're not doing it. Tell them you are not a professional OT - you are a working mum. Kill it stone dead. The more time they invest in it, the more they think it is a magic solution. You want her meds sorted, not a work-plan for you from people who manage her in a controlled environment with plenty of manpower and the end of the shift to look forward to." RedLou

Keep the focus on medicine not management. You and OH are already the super-experts on managing MIL.
I suggest using a repeated statement such as "This is a medical problem."

Repeat your statement calmly, politely and firmly in the face of escalating OT advice, activity plans etc.

 

[dottyd]

What planet do these people inhabit...honestly!

Are you expected to have no life of your own?

Does mil get CHC funding because like my dear mum she sounds like a prime candidate.

My mum is perfectly mobile, can feed herself etc but she's incontinent and disruptive with challenging behaviour and she gets it

In the nursing home mum is in some people have a one to one person who does not leave their side.

You don't have to be in a care home to receive CHC and a well managed need is still a need.

If you don't have it ask for a Dst meeting. You want to read and copy her notes and watch the video.

Once you get CHC you do not contribute anything.

 

[dottyd]

My mum had a Dols on her which also helped to secure funding.

 

[Slugsta]

Hi All,

Got home yesterday after a very enjoyable week. We visited Gijon and Bilbao in northern Spain and Le Havre and Cherbourg in northern France (although we didn't actually get into Le Havre). The weather was generally bright and dry but quite chilly.

Ann, it does sound as if you are utterly exhausted and the other stuff, that still has to be attended to whatever else if happening with MIL, certainly won't be helping. Don't forget that the elephant can only be eaten one bite at a time. I hope you are able to get out with your son and his gf, how lovely to have an unexpected visit Your youngest is a credit to you, especially at an age where many teenagers become very self-centered.

JM, I'm so glad that your mum remembered your birthday and that your son is now doing well at school.

(((RedLou))) it does sound as if you are starting to come to terms with things in your mind. I hope this helps you to start moving forward with your own life.

(((Spamar))) what a terrible shame about your camera!

(((RAnne))) I simply don't know how you manage, day after day.

Grace, I echo the concern already expressed here. Please try and take a step back from MIL in order to keep yourself safe.

We took my Mum shopping last Friday morning as planned. Got home just past 10.30 and helped her open her post - which included a letter from the hospital with a fracture clinic appointment for 10.50 the same day! We phoned them and they swore they had phoned and told Mum about it. Maybe they did, maybe not. They were adamant that she needed to be seen before we were due to get back from our hols and suggested they send transport for her. I said that would be OK - as long as they also provided someone who would accompany her throughout, right until they got her home again. Suddenly it was not so vital! An appointment was made for yesterday afternoon, which was fine as we knew we would be back quite early in the day.

When we were seen in clinic we were told that they would not have done anything with the plaster last week as it would have been too soon Anyhoo, Mum is now sporting a smart purple cast which has to stay on for at least the next 4 weeks.It is firmer than the previous plaster cast but gives her more finger movement, which should make things a bit easier for her.

This morning I was woken by the phone just after 6.30. It was Mum. 'I need to phone the office but I don't know the number' 'What office?' 'I can't hear you. I need to phone the office but I don't know the number' 'What office?' 'I can't hear what you are saying. I need to phone the office but I don't know the number'

Eventually she said that she wanted to know if the carer was going in today. Well, no - because she kept sending them away with nothing to do! 'I must have a carer because I have hurt my hand' 'What do you need the carer to do?' 'I can't hear you. . . ' Finally got through to her, at full volume,that a)the carers don't go in anymore and b)there was not much I could do about that on a bank holiday weekend.

After I put the phone down I heard hubby's voice from the next room 'That didn't sound much like compassionate communication' . It's a good job he was in another room - otherwise he would have needed the services of a proctologist to remove the phone!!

I should have visited Mum to see what she needed - but I'm afraid I didn't I know one of her friends will let me know if there is really a problem that can't wait until I next go in.

 

[IzzyJ]

Slugsta, I know I shouldn't, but your phonecall did make me laugh!

 

[HillyBilly]

After I put the phone down I heard hubby's voice from the next room 'That didn't sound much like compassionate communication' . It's a good job he was in another room - otherwise he would have needed the services of a proctologist to remove the phone!!

 

[Batsue]

Nice one Slugsta.

 

[Onlyme]

I feel they are not seeing MIL at her worst because

A) she is in one place so her world has reduced in challenges

B) no travel with outside stimulation bring up ideas of going home

C) much higher staff ratio (obviously)

D) the unit doesn't sleep and has no downtime

E) certain security in that the unit is now school/hospital etc and that she will get better or her holiday will end and she can go home if she just does what the staff say.

F) no one is more important and gets higher billing than her. Generally what she wants she gets or she gets extra staff input.

G) unit on one level, can be viewed in one visual sweep. No areas where they are hiding her family just out of sight or rooms where she would need to go as she has forgotten what is inside.

I too think she would need to be assigned one to one carers 24 hours a day to cope.

 

[Ann Mac]

Hello all,

Another one laughing my socks off at the phone call, Slugsta Glad you had such a lovely week away xxx

Red, I'm glad that you feel that you are beginning to move on and starting to come to terms with everything. Acceptance is a hard point to reach, especially with dementia in the mix, and I really hope that you can achieve it and move on xxxx

Thanks for all the support re: the OT Yep, I did, several times mention that its the sheer relentlessness of Mils need for attention, and how I can't possibly spend all day basically 'entertaining' her - not sure it sank in. Supposed to be meeting again later this week, will use some of the suggestions you guys have made to try and make it clear that if they are saying that she needs that level of support, then we need more input to provide it!

I agree that they haven't seen her at her absolute worst yet, Lemony - they haven't seen any of the real melt downs, probably for a lot of the reasons that you mention (apart from the ward set up - its more like a hotel, I think, with a large entrance area dotted with sofa's, with a dining room, loo's and a few smaller rooms leading off that and then a corridor that loops in an oval shape from the far end of this 'reception area', round a small garden area and with separate ensuite bedrooms, some twin, some single, leading off from the corridor). What they are obviously beginning to realise and appreciate though is just how much attention she needs for long, long periods of time and how resistent she is to distraction. Even without her 'blowing' they are acknowledging more and more that she is 'hard work'. There have been more than a few comments about how she is rarely still, always on the go, moving from staff to staff to staff, repeating the same demands and questions. Staff have said things like 'No sooner has one staff re-directed her, then another has to step in and try to do the same thing'. She 'packs' several times a day, her clothes and possessions (and often, others possessions too) crammed into anything from her small case to rubbish bags (which she is apparently rather clever at nicking from the domestic staff's trollies) and she has also taken to cornering staff and trying to engage them to let her out - a whispered conversation where she asks them to 'be a pal' and open the doors, insisting that she 'won't tell anyone' and 'if your quick, I can go now and noone will see'. Also a lot of comments about how hot and bothered she gets, they talk about 'sweat dripping off her face' and how red and breathless she gets. She is having several 'sponge downs' a day, from what they are saying, trying to combat the very uncomfortable state she is getting herself into. So I suspect that you are all right and certainly at this stage, its pretty much one to one attention needed.

I missed Saturday, but went to see her yesterday morning. I was told that she had been very agitated the previous day, had also been up for most of the previous night and had now gone back to bed. Found her flat out in her room, and spent some time 'unpacking' so I could work out if any clothes were missing and see what I needed to take home to wash. Mil - who the nurse had attempted to gently wake when we went into the room - stayed lying on the bed, eyes closed and yawning every now and again. I sat by her, once I'd sorted all her clothes and again, she just was completely away in another world. She kept her eyes closed, and just rambled. About how she had been down my street the previous night and even though she found our back door 'on the latch' , as we were out she didn't like to go in and wait for us and then about how she had washed all the clothes from the last two days and it was good drying weather though she worried about them being stolen off the line and she would grow into the things that were too long and the 'bloody children' had kept her awake all night asking her to add songs to the show, but she wasn't going to change it all again and they were running in and out and instead of singing 'Little donkey, little donkey, give Mary a ride', they had made up rude words to all the songs and they were funny but, Oh - she was tired and the amount of cleaning she had to do to keep the chalets clean was ridiculous and when S*** comes home she will have to tell him to sort the room out and see if he can stop the children running round all night long, otherwise she would never be ready to leave at 4 o clock and the boat might go the wrong way without her and the headmasters room would never be kept clean . . . and I had better go because after working all night she 'wasn't up to putting the kettle on' for us to have tea.

Although she was talking to me, it was just a stream of largely unconnected comments. Very odd how the expression on her face changed as often as the subject matter, with everything from big wide grins to over-exaggerated frowns and face pulling, and all with her eyes mostly shut tight. She didn't pause for breath and for once, she wasn't looking for any response - I simply sat and stroked her hand, and eventually, after telling me she 'wasn't up to putting the kettle on' she seemed to be drifting off to sleep again. I don't think she opened her eyes more than once or twice, I have absolutely no idea where she thought she was or what she thought was going on, but she certainly wasn't worried about it. I asked did she want me to go and she said that it "might sound rude but I have to sleep, so goodbye". I wasn't even there for as long as half an hour, I don't think. So I left, just stopping briefly on the way out to mention to staff that her chest sounded a bit 'off' to me - she was a bit raspy and rattley - and that was it.

Late yesterday afternoon I got a call from the staff nurse saying that she had been very agitated, 'running round and looking for missing relatives' (?) and had fallen. She'd landed heavily on her left side, and though she hadn't seemed to have done any 'serious' damage, a doctor had been called to come and 'check her over'. They would let me know if there were any problems. I again mentioned her chest - she gets more unsteady if she is ill, so just in case, I thought I'd better. Haven't heard anything else from them, so assuming she is OK, but will probably pop in today, more so I can reassure OH than anything. He is a bit shaken by what we have seen in terms of decline since she came out of respite and I honestly think he is convinced that we are going to lose her soon. There is a massive change in her, though its a bit difficult to quantify - I can understand OH's feelings, but can't make up my mind if this is just the next step down, a reaction to being in respite and that being followed by being in hospital, or even just the UTI she had followed by medication changes, rather than her dying! Part of OH feels as I feel (and I think a lot of us on here feel) that it would be a blessing and a release if she does pass away soon - but obviously, its his Mum, and no matter how much he says otherwise, he also fears her loss. I really feel for him - the conflict is so distressing Its not helped by his current work situation , which is putting him under massive stress.

OH in on his 3rd consecutive 13 hour shift today, but hoping when he goes to visit her tomorrow we will find out where Mil is on the medication withdrawal plan. Still no idea how long this will take or what the eventual outcome will be. Going to try and persaude OH to give visiting next Friday and Saturday a miss, I know that work stops him going as often as I do, but he still needs some time completely 'off', IYKWIM.

Hope you all have a good a day as possible xxxx

 

[Onlyme]

It sounds like a lot of cold turkey going on. I was going to suggest no one going for 2 days as I think she is on the brink of full meltdown and it might give the Dr a much clearer picture. At the moment she seems to be only getting to 75% strength and to be brutal they need to see 100%.

I thought Mum was on her way out many times. In the end I decided she was almost indestructible.

The closed eyes was familiar. Mum would do it even when eating as she couldn't cope with the visual stimulation while in full hallucination mode.

I know it's trite but MIL really is in the best place. She needed to get all medication out of her and you couldn't do that at home.

 

[Ann Mac]

The idea of not going for a couple of days might be on the back burner right now, Lemony, though I do think you have a valid point. However, just got back, and Mil is currently in A&E - I was right about her chest sounding 'off', sadly. They had just loaded her into an ambulance to transfer her from the ward as I arrived, and were about to phone me. This morning, her chest was rasping like billy-o and she was running a temp, they described it as she went 'downhill' very rapidly - which, to be fair, is usually the way when she starts with her chest and infections. I travelled across in the ambulance with her, along with a nurse from the ward - apparently hospital policy that she will be accompanied at all times, 24/7 by a nurse from the dementia ward whilst she is 'under their care', which I thought was excellent and not something that I've seen mentioned on the forums before.

I stayed about an hour and a quarter, and then decided to head home - at the moment I'm told that her situation is 'urgent' but not 'acute' - if she gets worse, then I'm going to be spending a lot more time there, so think I should grab what time I can now to sort the 'essentials' out at home. I've phoned OH, but no point him coming home yet, either, though he will put his bosses on 'standby' in case he does have to leave quickly and they need to sort cover.

Mil's wheezing and coughing, on and off, and again, most of what she is saying is from a completely different reality - she's fretted a bit about what the man said when he came to see my house (?), asked a couple of times about how I enjoyed my time in Galway, and told the nurse in A&E that no, she has never had an ECG before, but her Mum has one nearly every week. And was very certain that she is there because she has had a fall. She also gave her maiden name, and struggled with her DOB, getting the day wrong and completely unable to name the month or year she was born. She has tried twice to dismantle the various wires and so on that are attached to her, and I left as they were about to set up a drip, though she has yet to see a doctor there. The nurse with her is really lovely, encouraged me to leave saying that I might be glad of the rest later, and assuring me that there is no point in me ringing to check how Mil is before 6pm, though if there is anything that OH or I need to know they will phone us before then.

I have found out that the hospital consultants don't approve of 'maintenence doses' of anti-biotics, and the dose Mil has been on for around 16 months was stopped in the middle of last week - not sure if that's had any impact on her picking up whatever this current infection is.

Will update as and when I know anything xxxx

 

[cragmaid]

Thinking of you all.x.x.

 

[AnoviceinN1]

+1

Can't think of anything else to say but wish you all well.

 

[dottyd]

Wouldn't be at all surprised Ann re antib. The word if from the greek meaning against life which is why antib knock everything out. I don't think these low doses work they just wipe out your immune system. As soon as they stopped mil's the next big bug came along. That's why if you are given a course of antib you need to take probiotics. This means for life. Putting the good guys back.

So much of what you've written about mil is true about my mum except she's not so garrulous.

your poor mil. The place she was in sounds a lot like my mums nursing home. Hospitals are death traps for the elderly with dementia.

I hope she's not there for long

 

[Ann Mac]

Thanks everyone,

Its just wait and see, I guess now. I have no idea if she will 'bounce back' or whether OH has been right to be thinking the way he has been. She looked 'different' to me today, hard to explain but suddenly so frail and old, and I think I'm pretty much prepared in my head for everything from her being fine by this time tomorrow, to getting a phone call summoning us back there - quick!

I've got a pot of soup going, and am about to start on a pot of some sort of stew - typical me, when I don't know what to do, prepare to feed the 5000! Have it my head that if nothing else, I'll be able to feed OH and self something 'decent' and quick, if we end up spending a lot of time at the hospital over the next couple of days. Once I've got the food sorted, I'm going to try putting my feet up for a couple of hours - I feel a bit 'on pins', so am hoping that I can lose myself in a book and chill for at least a little while xxxx