So bizarre !

[jugglingmum]

Spamar - I missed that you had scattered OH's ashes today. It sounds like it went perfectly for you. I hope that you didn't feel too melancholy afterwards. going back to bed sounds a good idea after an early get up.

Slugsta - you are going to have to chase adult services to get things moving - you know that - we know that - it's just finding the energy.

Ann - the thought of all that tidying exhausts me, I spend too much detail sorting it I think. Dau was laughing her socks off when her friends did D of E - she said now they know how I feel every Monday after a race. She has done plenty of 'winter' walking, although not with kit to know what they did.

 

[Ann Mac]

Morning everyone,

Spamar, that sounded like it was a lovely way for you to scatter OH's ashes - gentle and private and very personal. Just right xxxxxxx

Amy, glad your Fil is eating and drinking, but it sounds like its pretty stressful for you, hun - hard as it is, try and take some 'me' time, and remember, we are all here if you need to talk/vent xxxxxx

Slugsta, I think JM is right - mostly, when it comes to dealing with so-called support services, if you wait for them to shift themselves, you'll be waiting for an awful long time. Sustained nagging and chasing appears to be the only way to get them actually do something. I personally think that they are mainly paid to go to 'meetings' - looking back over the last nearly 3 years, its seems to me that 90% of the time, when I have tried to get hold of the person I need to talk to in the various services, they are always in 'meetings'

JM, my girl isn't quite as active as yours is, though to be fair, she is quite used to long walks, does a lot of swimming and dancing - however, this D Of E expedition she has found very tough! 10 miles the fist day, over some very rough terrain and up some very steep hills, carrying tents, sleeping bags, camping mats, food, clothes and cooking gear - and at just after 5 that evening, it started to rain - heavily! Despite us buying a quite expensive kitbag for her, it turned out not to be as waterproof as was expected, and all her clothes and her sleeping bag ended up rather damp, as did her walking boots (mud so deep it came over the top of them, apparently) and her spare trainers. Then the same length walk back the next day, via a different route, but still with rough ground and what she described as some 'even steeper hills'. I was waiting when she arrived at the pick up point, and I don't think I have ever seen her look quite so shattered before - and even then, she looked in slightly better shape than one or two others! Despite a soak in the tub, with the spa jets going, despite paracetamol and muscle rub, she was hobbling badly and aching from head to foot when she went up to bed last night, and came downstairs for more paracetamol about an hour ago - dreading what she is going to be like when I get her up for school in about another hour! And that was only the 'practice' run - she has the real thing to do next week!

(By the way, do any of you know how much mess a packet of chicken flavoured noodles can make when it burst's in a kitbag full of damp camping gear? No? Well I do now - and its a heck of a lot of mess!)


My cold seems completely gone, thank goodness so am going in to see Mil today. Not sure if OH will be going with me - he did his first shift last night, at his new job. I suspect he is going to be absolutely shattered when he gets home!

Take care, everyone xxxx

 

[jugglingmum]

Only dry bag style rucksacks are 100% waterproof. I have always used rucksack liners such as this:

http://www.outdoorvalue.co.uk/produ...k-liner.html?gclid=CKen3_XM3s0CFRITGwodhlMLNw

I would suggest one for the sleeping bag and one for the main rucksack so that the sleeping bag is double lined.

With walking boots, I use gaiters in wet weather, they aren't perfect when trudging through over boot level mud but do help.

http://www.gooutdoors.co.uk/search/go?view=grid&w=gaiters

I did overnight winter hikes in the remoter parts of the lakes and similar from when I was 15 with Venture Scouts and I didn't carry half of what I see D of E groups trekking about with in much warmer conditions, I always think they have more than they need. I remember we made an error of not pouring water into our cooking pot at night and then trying to smash a frozen water container the next morning to get fragments of ice out. We used a 1.5 man lightweight tent for three of us. I certainly wouldn't consider carrying trainers in case boots get wet, as trainers aren't designed for the terrain. Boots were worn wet if need be, I would have worn 2 pairs of woollen socks, and carried dry ones. I have lighter weight gortex boots now.

I imagine the chicken noodles set like concrete.

 

[Amy in the US]

Again, apologies for missing out individual comments. My FIL is not great, but okay. My MIL got a call yesterday that her brother is in hospital in serious condition and so she is now on her way there. My husband is going to try to come here sooner than planned. It's not dull around here, except for the kids (they are lively, but we are not doing what we would normally to entertain them). Not to be unkind but things may be calmer now that my MIL isn't here. As she is convinced she is the only person who can look after FIL, things must be urgent with her brother (nobody can/will tell me specifically what the issue is).

Hope you are all as well as possible and I will get caught up with back posts when I can. Thank you!

 

[Slugsta]

Afternoon all,

(((Amy))) What a terrible shame that your family now have something else to deal with, in the shape of MIL's brother. However, I hope you are right in thinking that things with FIL might be slightly easier with MIL out of the way!

Ann, how shocking to hear that there have been concerns about the school for some time. It might seems that a couple of years is nothing when it comes to trying to turn things around - but it is more than enough when looked at as a proportion of someone's senior schooling!

I wonder about the advisability of doing the DoE practice walk just one week before the real thing. As a runner, the last long training run would be several weeks before the real event. I wouldn't have dreamed of doing a 20 miler the week before a marathon! Too late now though, so I hope young Miss Mac copes well.

Mum was very sad today, as well as bored and lonely. She uttered the words I have always feared 'I do wish I could come and live with you' Of course, she doesn't remember how difficult things were when we did live together. I certainly do though and would go to the ends of the earth to prevent it happening again.

The staff got Mum settled with some colouring the other day but she says she doesn't want to do it often. She says she is bored but can't manage a lot of the things she used to do - puzzles, painting, reading etc - so I really don't know what to suggest.

I didn't even remove last week's blister pack of meds today. It should have been empty but actually had only 2 days worth missing Had a chat to the pharmacist about various devices but, in the end, we both agreed that Mum really needs personal intervention rather than a device.

Mum has always liked a bit of attention. I said I was trying to get her some help - 'Other people have it, so I don't see why you shouldn't get something' and she seemed quite content with that. Of course, it will probably be a very different story when the time comes!

It's been dry and warm here today. I hope everyone has had a bit of sunshine.

 

[Ann Mac]

Hello all,

Oh Amy, I am so sorry to hear about your Mil's brother There is never a good time for illness to strike, but when all of you are so worried and stressed about Fil already, it has to make everything so much harder. Hoping that you are right about the tiny glimmer of a silver lining, by way of it perhaps becoming easier for the rest of you to help with Fil whilst Mil is away. Sending more {{{{{{{hugs}}}}}} cosw you definitely need them at the moment xxx

Thanks for those links, JM - look like a very good idea for next weeks 'expedition proper'. The list of stuff she took was huge and very specific, and I felt a lot of it was unlikely to be necessary too. The kitbag had to be a specific capacity, they were told to take food for one supper, two lunches and one breakfast, plus snacks, plus 'emergency rations' and 2 litres of water. Following the suggestions, daughter had a selection of noodle based packs - but only actually got to eat one of them (at supper time and in the actual camp), because despite them having to carry a small camping 'cooker' as they walked, they weren't allowed to carry the gas to fuel it (good old 'elf and safety) and so couldn't cook the noodles or whatever at lunchtime, when they were hiking anyway! The trainers were definitely a waste of space - but the kids were told they must have them for wearing around the 'camp'. Dau says that they couldn't really wash properly anyway, so for next week, I've suggested just wipes, paste and toothbrush and a roll on deodorant - forget anything else. And clothes wise, instead of two complete outfits, one for each day, I've suggested thick leggings x 2, 1 pair of joggers, and 3 tops, including a warm hoodie just in case - and it doesn't matter if she sleeps in the clothes she hiked in and then wears them the next day - last time she took a flipping onesie, as advised. It just all adds weight, as far as I can see. I believe one kid 'flipped out' after the first days hiking and got sent home, and dau tells me that one of her group had to be talked out of throwing in the towel when faced with a steep hill on the 'return' hike. I know that there were very few smiling faces amongst the kids I saw arriving back at the end of the 'expedition' !

So sad, Slugsta, what you say about your Mum saying she is bored and lonely I can really sympathise with trying to help her overcome that. As Mil started to lose concentration and focus, as her abilities dwindled along with her memory capacity, the list of 'things' I could come up with to keep her entertained/busy/feeling useful/distracted just kept getting smaller and smaller. She often wanted to do 'something' and it would have been good to have a selection of tasks and pastimes for distraction purposes, but finding her something she could do became harder and harder. I think by the time she went into hospital, the only 'jobs' she could manage were folding small towels (and even then I had to supervise from a distance as she would wipe her mouth and blow her nose on them), tidying the cushions on the sofa's or giving her a dry duster (couldn't trust her with polish as she couldn't remember not to point the nozzle at her face before spraying) and let her wipe down a couple of 'flat surfaces' around the lounge and dining room. That was it. She lost the concentration, focus and abilities needed to read, do word searches, colour, knit, play paitience or even snap - it was even 'hit and miss' over her watching TV. There were possibly (probably) more 'things' she could have done if she hadn't so bitterly resented any of the help or supervision that was necessary to keep her safe - no matter how tactful I tried to be, she hated me 'hovering' and that limited her so much more. She constantly asked to iron or cook or mop or hoover - but bit by bit, I had to stop her doing all those things because she just couldn't do them safely, she had no concept of the dangers of heat, wet floors, tripping over wires, sharp knives or any of the other ways that those activities could be risky. Its a nightmare situation. I really hope that adult services get their finger out and sort something for your Mum soon for her - apart from the help with meds and meals, both of which are obviously important, I think that perhaps your Mum would get some pleasure from the actual visits, which would be lovely for her - and for you xxxx

Went to see Mil last night, just after 4pm, and again, walked into a unit full of quite 'distressed' patients. We were told that Mil had been 'quite agitated' for the previous 3 days, and that the junior consultant wanted a word before we left, about her medication. Mil was full of the usual confabulations, a lot of moaning about how she does this and that (all the cooking, all the cleaning, etc) and how the 'other b*****es' do nothing to help. Although she hasn't been told about my Mum dying, I think she had overheard something and that subconciously, its stuck with her (perhaps the staff talking about why I didn't go in for several days, I don't know) because for the second or third visit in a row she hammered on about how she had seen my Mum that morning and tales of all they had done together. She took it upon herself to reprimand one patient for swearing, and another for shouting and being rude - talk about pot, kettle, black - because Mil also did all those things at various times. We also got a lot of 'going home' type comments, too The junior consultant told us that not only has memantine been reintroduced, to deal with the 'agitation' but that the dosage of the prn med had been tripled, and that she is having it 3 times a day - so most definitely not now given just prn. I reminded them that we had told them about Mil's ability to become almost 'immune' to the benficial effects of medication very quickly and he agreed that this is the case with her, saying its not 'common, but also not unheard of' with lewy body dementia. Its possible that she will have to have regular 'reviews' with her medication changed frequently in order to even slightly ease the upset and behaviours Again, more validation that the residential route is the only option - I just couldn't cope with that at home (As it is, I am sure I have developed a bit of a phobia about dealing with flipping pharmacists after all the stress they have caused over the last year!). Mil had to be distracted for us to leave and I suspect that she took some calming after we left

My sister arrives here this evening, so I may be absent for a couple of days - but I will be thinking of you all x Take care, everyone xxxxx

 

[Spamar]

Hope you and your sister have a good old catch up and a fabulous time!
More proof that you did absolutely right thing re mil

Tooth appt yesterday,with filling. Fortunately no decay, so no injection. Just the large filling cracked. I have dreadful teeth,wrong numbers of roots on some, overshot jaw ( thanks father!) and so on. Went round to see a friend who lives nearby afterwards, which was a nice catchup.

Neighbours coming this am, shopping, then singing, busy day!

Hope you all have a good time today!

 

[Batsue]

Ann, when daughter packs her bag, put some of the clothes inside a dustbin bag to keep them dry, I find that cereal bars make good snacks for hikes, you can also get self-heating food packs that only need water to activate them from outdoor shops.

Have a lovely time with your sister xxx.

 

[RedLou]

Hi Bizarrites. I have been coming in and following all your news - Amy, sending hugs. Ann, have a great time with your sister.
I probably won't post much or be present quite as much now. I'm sort of mending, and while I feel a great pull and affection for you guys in this thread, I also know that some of what I read takes me right back to situations vividly and I can feel my blood pressure rising. I haven't got to Spamar's level of simultaneous energy and calm, yet! I have a lot of issues I'll never get a chance to work out now, since discovering various things after my father's death. So sometimes the simplest thing is to realise you'll never get 'closure' and try to forget (ironically). The only thing I can hope is that my experiences will inform my behaviour towards my own daughter and son-in-law.
I will pop in once a week to check you're all okay but may not always post. I think I'm just saying this so you know I'm still around, if a quieter presence, and that my silence does not reflect indifference: indeed, all of you have my warmest thanks for your support during a horrendous period of my life. xxx

 

[Spamar]

Good grief, Red, is that how I'm coming across? I've never been someone to aspire to before.
However, thank you very much, it helps me feel better. It also makes me think I am further down this road than I think I am! I still have my problems, but not so large as they we and I can mostly cope with them, though I do call in help on occasions!
I'm also getting very picky about what I read these days! That helps!
Anyway, thank you, and I hope you continue to improve!

 

[jugglingmum]

I'll catch up later - but lovely neighbours have asked if they can dig up brambles that are on my side growing into theirs, just not managing to keep on top of things as I should! And flipping birds dropping the seeds!

 

[Slugsta]

(((Red))) I can understand that spending a lot of time here might be stopping you from moving on. I wish you every success in your attempt to make some sense of things.

(((Spamar))) glad that you didn't need a lot of work at the dentist. Hubby went in today with a broken filling, has been told the tooth now needs crowning

(((Amy))) sending you lots of love.

Ann, I hope you and your sis are having lots of fun together

I had a call from Adult Services this morning and booked an appointment for Mum's assessment. Then had to ring back and cancel it almost immediately as I realised it clashes with an assessment I have for my ESA benefit Still waiting to hear back about an alternative time but at least I know things are moving, albeit slowly!

TM and I went to our riverside pub today. We only got a glimpse of the kingfisher but also saw cygnets, damselflies and a flock of goldfinches

 

[Amy in the US]

redlou, do what you need to do and you know where to find us. Thanks again to you all for hugs and love and support. Means a lot

In A&E with my FIL. He was much worse this morning and we had to call the squad/paramedics/ambulance (what would you say in the UK?) to get him out of the house and to the local hospital. My husband and I are in the ER bay (not sure of your term!) with him. They suspect an infection, I think. Pulled blood for labs and blood cultures. Now we wait. He's very uncomfortable but we need to know what is going on and get it addressed. Thanks for your continued support and kindness. Love to you all.

 

[Slugsta]

Amy, I'm sorry to hear that FIL had to be whisked off to hospital At least he is now where he needs to be and I hope he will soon be feeling better.

Yes, we would probably say that we had sent for ambulance of paramedics and we tend to refer to A+E rather than ER. However, with so much US TV over here, I think most of us are pretty familiar with many of the terms you use

Mum was, again, very not with it today. Had no idea what day it is, what comes next etc - and knew that she didn't know (if you see what I mean ). She had a visit from the podiatrist this afternoon and we (hubby and I) stayed and got her 'evening' meal (not that I call 4.30 pm 'evening'!) and kept her company while she ate. We will see to her meals over the weekend and her Adult Services assessment is booked for Monday afternoon.

Sending lots of love to you all xxx

 

[Spamar]

Amy, sorry about fil, but let's hope there is some progress in care.
Slugsta, hope all goes as well as possible! I got used (??) to meals at all times of the day!

Spect this evening reading! Unaccustomed luxury, cos eyes not to good, usually choose TV, but nothing on worth watching......

Keep smiling, folks!

 

[CeliaThePoet]

Amy, some cancer treatment centers have their own ERs. If that's not where you are with your FIL, do try to reach his oncologist. Some treatments have complications which are common enough that a certain protocol is recommended for response (one antibiotic over another, for example). Hope he is comfortable soon.

 

[Ann Mac]

Hello Everyone,

Amy, I am so sorry to hear that Fil is so poorly I hope if it was an infection, that they have been able to do something to tackle it and ease his discomfort. And I hope that you and your OH, and the rest of the family are OK, including your Mil's brother, and that you are all lookinh after each other, as well as Fil - I can't imagine how much stress you must all be going through and how difficult it must be xxxx

Red, so glad to hear that you feel you are at least 'sort of mending' and totally understand the need to step back a bit and move, on, hun - though I will miss your regular prescence on here xxxxxx

Spamar, I agree with Red - after everything you went through, your calmness and acceptence and ability to move on, maybe slowly and not without issues, but still accepting the new reality and just 'getting on' with life is inspirational. There is life after caring, even when you also have grief to deal with - and it helps to know and see that others, like you, can adjust and deal and go on xxxxx

JM, I struggle to keep on top of things - and I don't work (yet!) as you do, I only have one youngester at home and her 'activities' do not take up the ammount of time and committment that your son and daughters' do. Give yourself a break, hun. Let the neighbours help by digging up the brambles, if they don't mind, say thank you and give 'em a box of choccy's or bottle of wine, and don't beat yourself up xxxx

Slugsta, hope the assessment this afternoon goes well for you and your Mum, and some help can be put in place quickly - visits to oversee the meds and the evening meal would be a great start, and take some of the worry off you xxx

Has anyone heard from Grace? Hope she is OK .

Had an extremely busy couple of days whilst my sister was over. So good to see her in 'the flesh' and lovely to meet her fiance for the first time I didn't attempt to visit Mil whilst they were here (they went home yesterday ), and OH hasn't got there either since last Wednesday, partly due to the new job and trying to adjust to working nights, and then due to him picking up some sort of 'flu bug', (which he held at bay at first, but it then knocked him off his feet when he came home from work on Saturday morning) so he hasn't been able to see her either. We are usually there 5 or 6 days a week, so its not like us and I have phoned and explained why we haven't been in. I'm going in tonight, with a load of clean clothes. At the back of my mind, its been a bit of a struggle - part of me almost defiantly thinking that there is nothing wrong with me taking a few days from visiting when my sister is over, a good bit of me feeling guilty because it feels like I've neglected Mil, and me not going because I'm busy enjoying myself is not any sort of an excuse really (unlike OH, who can't get there because he is guenuinely ill). OH has put his sensible head on and reminded me that we have said that once we find a permemnent placement for her and get her settled, we will only visit 2 or 3 times a week, so this is no different - but it feels 'odd' and as though its not fair on her. And yep, I know that her memeory is so bad now that she actually hasn't a clue when we last visited and will probably forget I've been within 5 minutes of me leaving tonight, anyway - still feel like I've neglected her!

There is no news on a placement yet - its odd, I would have thought that there would be a flurry of activity once the decision was made, but nope - I've asked a couple of times, and just been told that the CPN has let our preferred home (DC) know that we would like a place there for Mil (which I had also already done) - but that seems to be it. No idea what we are supposed to be doing - are we supposed to be going out and looking for somewhere else, or is it OK that we would prefer to wait for a place at DC? . Is there any of the usual 'paperwork' or financial sorting to be done? (have informed carers allowance and all that, obviously, but should there be something else?). If she is funded under this 117, does she still have to contribute from her state and private pension? Should we be doing 'something' about sorting it out now, if she is supposed to contribute? I keep waiting for a phone call, asking us to attend a 'meeting' or whatever - but nothing so far. Its odd and I keep worrying that at some point, someone is going to ask have we done this or that, and its going to cause problems because at the moment, we just don't know if there is a 'this or that', that we should be sorting!

Hoping to hear today if I'm being called to interview for any of the jobs I've applied for - a bit worried because my mate had looked over my applications/CV (she is a TA herself) and told me that she thinks that I may not get called as on paper, I looked to be over-qualified - not sure what I can do about that? Because without the degree, I doubt if what I have by way of 'educational' certificates and so on, would be enough, so it isn't just a case of leaving that bit off

So, job chasing, usual pottering round house, and a load of editing to tackle if I get the time - both sis and her OH are keen amateur photographers (lol, at times this last few days I felt like I was leading a very intense photo-workshop, with the questions the two of 'em piled on me!) and we took our camera's to the zoo, to the airfield and for a walk down by the River Dee at night, as well as fitting in a load of 'shopping expeditions' (my sisters' idea of heaven, my idea of hell!) and visits to other friends while they were here, so the camera's were very well used. I've also got to pick up some stuff for Dau's next DofE camp (Thursday) and I am hoping to hear from the B.O.G from the school, who so far haven't even acknowledged the stuff I sent in last week - 7 actual school days left before the hols, which will of course make a handy excuse not to deal with it till September, I would imagine!

Hope everyone is OK, and has a good day today xxxx

 

[canary]

"We are usually there 5 or 6 days a week, so its not like us and I have phoned and explained why we haven't been in. I'm going in tonight, with a load of clean clothes. At the back of my mind, its been a bit of a struggle - part of me almost defiantly thinking that there is nothing wrong with me taking a few days from visiting when my sister is over, a good bit of me feeling guilty because it feels like I've neglected Mil, and me not going because I'm busy enjoying myself is not any sort of an excuse really (unlike OH, who can't get there because he is guenuinely ill)."

Can whoever has got the guilt monster stick pass it on to Ann please?
Ann, Im not going to recite the answers - you know 'em already. You just need to give that guilt monster a good thrashing!

You dont need to do anything about the finances as she will be funded under section 117 It is not means tested, so they wont be looking at her finances and she should keep her state and private pensions. Im sure it must feel very odd, but Im glad you are managing to get out and about.

 

[IzzyJ]

I have been popping in to read, but twice lost posts I had been going to add. Stupid! Part of it was not feeling I still 'belonged' with this community, now my mum is dead, so I probably lost my posts semi-on-purpose.
Then I read Ann's comment, about "accepting the new reality and just 'getting on' with life. There is life after caring, even when you also have grief to deal with - and it helps to know and see that others, like you, can adjust and deal and go on".
So many things I wanted to say: it boils down to sympathy, for everyone who is finding life tough at the moment.
The thing is, there are so many things in common, it's difficult to know who to mention. Some things remembered, some reminded about, some just plain dreaded.
Always Ann first - not only is it your thread after all, but your journey is always so honest about what you are facing (still) and feeling. I can't believe how appalling your dau's school has been / is being. I am not sure if the fact that your OFSTED was aware of the school's failings but seem to have done very little is good or bad. I do hope all goes better with her DoE this week - very sensible to rationalise what she is taking. Don't feel guilty about not visiting MiL! Just don't! You, who have gone way beyond, over and over, really mustn't put yourself through that.

Amy, you must be feeling pulled in so many directions, and not knowing where your priorities need to be at any minute. Hang in there, you are doing a great job, particularly keeping on top of the children around, who can't be focused on illness and what it brings as the adults are. Lots of hugs for you, I think.
JM, I don't know how you are managing with all your responsibilities too. Let the brambles go, just as Ann recommended! How is your dau feeling about her holiday now?
Spamar, you write so calmly about such an important step. I wish I had your ability to take the 'here and now', instead of keep looking back.
Red, I am really glad you are ready and able to think of moving on - I'm another one who will miss you and your pragmatism though, especially with the lack of gratitude you faced. I have days when I can hardly bear to read what others here are still going through, but then need to be here somehow.
Anyone I haven't mentioned - I'm sorry, I feel I know you all, and understand just a little bit. (((Hugs)))

 

[Slugsta]

Evening all,

(((Izzy))) Speaking for myself, I believe that you 'belong' here for as long as you want to. I know it can be difficult, working out your new reality, new role, new priorities. If we can help with that process, even just by being here, we are glad to do so

(Sorry Ann, I know this is your thread and nothing to do with me!)

(((Spamar))) I totally agree with what has already been said about your calm acceptance of life's vicissitudes.

(((Amy))) you are in my thoughts.

Ann, I'm so glad you have a great time with your sister, it was long overdue! Please give that guilt monster a proper thrashing, it has no place with you of all people.

I had an assessment for sickness benefit this morning. The nurse who carried it out did my last one too. It seemed to go well and she said she doesn't think I will have any problems with the results, so my fingers are firmly crossed.

Mum's care assessment also seemed to go well. She is going to have 2 visits a day and see how things go, plus another day at Day Centre. Just hope she doesn't send them away saying she has done everything already!

Mum seemed to be doing quite well while she was being assessed. 'Ooh no, I don't think I have any memory problems'. Then she was asked what she used to do for a living 'I don't know' (she was a swimming teacher), well, had she been married? 'I don't know, I don't think so'. I asked how she got me 'Well, I suppose I must have been married but I don't remember it'. The typical image of someone with dementia is that they remember what happened 30 years ago but not what happened 30 minutes ago, Mum seems very different!

It's been nice here today, dry and warm - long may it last!