Saturday night

[jzygirl]

How do you spend your Saturday night. I settle down with a glass of wine and try and catch up with the programmes that I recorded during the week. Funny how they not so exciting now I've got time to watch them. Hope someone is haveing fun tonight. Janex

[NannaB]

After my Indian takeaway with friends last Saturday, today was back to normal; Strictly Come Dancing and Casualty while Colin dozes in his recliner. Why do the audience have to be so noisy on Strictly? I say I watched TV but listened really as I spent most of the time trying to figure out how I had 7 more stitches on my knitting needle than I was supposed to when I got to the casting off bit of the sleeve I was knitting. I decided the pattern was wrong, not me. I've been knitting this for my grandson for ages because if I go wrong, I leave it a long time before picking it up again but tonight I was determined to carry on.

I also had an interesting text conversation with a friend asking advice on making an oxen costume for her grandson's Nativity play. I'm not the person to ask about sewing. I have cobbled together costumes in the past but also managed to make myself a 3 piece suit for a wedding, realising at the last seam that I'd made the whole thing inside out.

It took me a long time to get Colin to bed tonight. I'm not quite used to the hoist for helping to get undressed. Transferring from chair to wherever is ok but getting trousers of and PJ bottoms on is a different story. Poor chap went up and down several times. He just laughed through it as I got more and more frustrated with myself. Still, hopefully I wore him out so may get some sleep tonight.

Night night.

X

[Gbodiham1939 in reply to NannaB]

Had a good laugh reading about your inside out 3 piece suit. I also realise how ' fortunate ' I am not having to do any hoisting .. Sandra has been completely bedridden since April She relies on 4 visits daily from carers to deal with everything .. I just have to deal with medications ( for Sandra's Crohn's ) .. no medication for CBD of course.. food and housework ... Problem is sleep deprivation. Next hurdle to cross is how to cope with Sandra's e-cigarette habit. She gave up smoking cigarettes after major surgery about 6 years ago.. I have to change the batteries and cartomisers on the e-cigs..and help Sandra to use her one 'good hand' to manoeuvre the e-cig in and out of a small bag.. The only item allowed on her bedside table ( the effects of CBD /OCD symptoms. Now her 'good hand' is becoming more useless.. What next I wonder? Sandra has had approval for CHC (continuing health care) and we are waiting to hear exactly what this means in terms of support. Registered disabled myself (knee surgery required at some stage) Watching 'Strictly' last night I dug out a photo of us at the Hofburg Palace in Vienna in white tails and ballgowns (1982) Viennese waltzing seems light years ago Graham

[NannaB in reply to Gbodiham1939]

Fancy Viennese waltzing in Vienna. What an experience and you must have looked wonderful in white tails and Sandra in her ball gown. What lovely memories.

The best thing CHC gave me is a night nurse 5 days a week. I am sleep deprived at weekends but can cope now I know I can sleep the rest of the week. They stay until 8.00 am so can help me get Colin up in the morning as well. I now get an early morning carer on Sunday and Monday mornings as well as I can't get Colin out of bed alone. I have the hoist but I can't get the belt round him when he is lying down. If you are self financing now, your carers should be provided by CHC. Colin has medication for Ulcerative Colitis. He has had it since 1977 and had 4 bouts of hospitalisation with blood transfusions. He was told his body was dangerously short of nutrients as the weren't being absorbed through his damaged bowel. I have wondered if the lack of vital nutrients getting to his brain over a long time had anything to do with getting PSP. The GP didn't think so.

Nanna B

[cabbagecottage in reply to NannaB]

I keep losing my place on here a

so have to keep on signing in .

We had our 98 carer this morning . I know we will make it to 100 by Xmas . It really does my head in . !!!!!!

You get use to having some really nice ones and then they are gone treated so badly .

[Gbodiham1939 in reply to cabbagecottage]

I haven't kept a tally of the number of carers .. We get two carers 4 times daily plus a 'respite carer' twice a week .. They are mostly very nice and caring... Social Services were talking of changing to a different Agency presumably to save a few pennies per hour.. A completely new set of faces for my wife was not considered of any importance ... fortunately it did not happen.. probably as it is not easy to organise 'doubling up' of carers as we are 2 miles from the nearest village

[jzygirl in reply to cabbagecottage]

I count my blessings we have they same carer's and if we do have a strange face they always come with one of our regular girls. Since they have been comeing in we have had our four regular girls and two girls that have been a couple of times each. Lets hope it stays that way. Jane x

[NannaB in reply to cabbagecottage]

When you posted some time ago how many carers you had, I started to save the time sheets of our carers with the intention of counting ours. I haven't done it yet, just have a pile of paper. We weren't too bad originally as I have two regular ones but now We have someone every Sunday and Monday morning and there have been lots. I shall make it my target, to count up before the end of the week.....that sounds like my work days.

[Gbodiham1939 in reply to NannaB]

Hello again. It was great to get your reply .. I dare not think that I might get a night nurse more than a couple of nights a week .. I have been getting up two or three times a night since April and sadly Sandra's mental decline means that she has no understanding of my

physical limitations and lack of mobility.. I have been told that the 'eligible' outcome of the CHC will be advised to me 'in due course' ... Doesn't exactly sound as though it is imminent does it?

[Pippalina in reply to NannaB]

Did not have a good night Eddie rolled out of bed and I could not get him up. Phoned 111and the paramedic arrived to get him back into bed,finally got to sleep at 4am.I may last out tonight for strictly results before snoozing .we are awaiting a hospital bed so that should help.I am also having difficulty moving Eddie as his balance has completely gone and he hangs on for grim death.I use a turner for chair to wheelchair and back but have not yet been offered any type of hoist.Community Matron coming next Wed will discuss options with her,in the meantime we have to hang on and hope we both don't take a tumble.Sweet dreams!

[NannaB in reply to Pippalina]

Oh dear, I hope tonight is better. We had a turner but as Colin falls sideways, it was no good. We now have a standing hoist. As he has strong arms he can hold on but also has the belt round his waist to stop him falling. When I asked him if he felt confident when he was hoisted up, he indicated yes. We also have the belt to completely hoist him up, legs as well but he doesn't need that yet. The hospital bed is much better as well. No more tumbles out so hope it works as good for you.

As you say, sweet dreams tonight....we hope.

[Gbodiham1939 in reply to Pippalina]

You definitely need more support.. Hope the Community Nurse will be able to expedite the hospital bed and a hoist.. You will need instruction re using the hoist .. so try and get care visits if possible.

[cabbagecottage in reply to NannaB]

I don't tink you are spoilt at all . I come to breaking point at some time everyday and think how will I take the next step . I find myself bent in half a great deal of the time . I am tallish and his chair is so low .

I should have carers right through the day but am holding out to try and keep normal whatever that has been for a few years . I find things upset John so easily and then the Parkinsons is made so much worse catch 22, . We tried the standing hoist . does Colin use commode yet . I some ways once we have in to having all these aids it did come easier . I was almost carrying him about .

[NannaB in reply to cabbagecottage]

Yes he has a commode but I wheel him out to our wet room and the commode chair fits over the toilet. When we first got it, he used it with the bucket underneath. Afterwards, I tried pulling the bucket out but it was stuck. Colin was laughing but I was getting very cross, on my knees, nose at bucket level ( not nice!) trying to pull the thing out. I suddenly realised it wouldn't come out because his "bits" were dangling into the bucket. Poor chap, I nearly did him a very nasty injury. Then I had to get him off it and clean him up but I didn't have a hoist then and getting him off a commode is not like getting him off a rise recliner as you probably know. That was the one and only time I've used the bucket and I didn't use the commode chair again until I got the hoist. You bend in half, I spend a lot of my time on my knees as it hurts my back to bend. Everything seems so low down doesn't it?

[jzygirl in reply to NannaB]

Oh NannaB I have just finnished laughing about the bucket on the commode I have done that trick as well. I have also broken one bucket by trying to get the commode over the toilet without first removing the bucket. Had to stop the carers one night as they wanted to strip Brian before wheeling him over the toilet. They did say they knew what they was doing but when I said about dingels that dangle they admitted they had not done a man before and hadn't realised there could of been a problem. Jane x

[cabbagecottage in reply to jzygirl]

I have enough of this everytime I try to respond a different page comes up about health .!!!! Anyone else having the same thing .

Yes you have to watch the carers like a hawk . The remote on our house is inclined to spring out of the hand and catch Johns head . The boy who came last night didn't evn tights th strap around the waist enough which hurts under the arm themn . I use it on my own and they are always two . Health and aafety.

[NannaB in reply to jzygirl]

I'm laughing as well Jane. I tried to push it over the toilet without removing the bucket. There should be warnings printed on it, "Remove before pushing commode over toilet" and "Beware of dingles that dangle".

Fortunately our bucket didn't break.

[jzygirl in reply to NannaB]

Think we should do a post troubles with commode and tangles with a hoist. Think we would get some laughs with the replies. I still get in a tangle trouser wise when useing the hoist and for the life of me I cant figure out why because I did it for a living and im sure I never got into such a muddle at work. Janex

[cabbagecottage in reply to jzygirl]

We could start writing a soap but nobody else would believe us if they weren't in the same position and it's not something we talk about to others is it

[nanonthenet1 in reply to NannaB]

Could be a Faulty towers moment lol xx

[nanonthenet1 in reply to NannaB]

We have to laugh, Basil faulty moment haha zxx

[zjillian]

Saturday night: After I get my husband to bed (7:00) I play...I draw, read, eat cake, talk with my dogs and sometimes write. I relish the time alone. How wonderful to have Bob asleep and not shadowing my footsteps. I stay up late reading which always feels a bit of an indulgence.

Jill

CR

[nanonthenet1 in reply to zjillian]

The all important me time, precious x

[NannaB in reply to zjillian]

Colin's night nurse arrives at 10 pm. We then have a chat and then C has his Horlicks. We start getting him to bed at 10.45 so by the time I go up it's 11.30. Radio on to muffle tinnitus and put on timer for 45 minutes. I'm always asleep before radio turns itself off. Alarm set for 6.50 and we start all over again. I don't seem to read much nowadays.

[wifemo in reply to NannaB]

Yes, I use the same trick for tinnitus.

Don't want to worry you, but after two years on my own I still have four piles of books a couple of feet high waiting ...

Mo

[nanonthenet1]

My Saturday's, like every day, packing, sorting the plant pots out, defrosted fridge freezer ready for move, still lots to do and feeling very sorry for myself, but, love to sit with a vino and watch strictly , love it and loose myself for a while. Then listen to magic music Chanel on tv xxx

[cabbagecottage]

What's it like to watch TV programme all the way through in one go lol

[jzygirl in reply to cabbagecottage]

Watching a programme from start to finish in one sitting is a dream I record what I want to watch so I can pause it and do all those little things like get a drink some sweets or get the rotastand and wheeled commode or sit him up in his chair because he has slipped down. Janexx

[cabbagecottage in reply to jzygirl]

It's like jumping on and off a roundabout isn't it .. Our night carers come to get him into bed it's the only thing a have a problem with , O can do it but it does pull on my back . The time is suppose to b 10.45 generally they come at 10 , I have told them 10.30 would be great , tonight had a call at 10.45 to say they would be late had two more other calls before us

They left us at 11.50 . It's a nightmare . They are more trouble to me than my husband . not the carers themselves but the office that runs it . goodnight now ot they will be here to help him up before I get to bed Night all

[nanonthenet1]

In the middle of a house move, I think I'm not as far down this awful road as some, but it's so very hard trying to stop my hubby helping, falling, feeling helpless, he goes to bed early, wakes me at 4am, but I do relish the time I have to myself, not for ever .....

[zjillian]

House move: Think of stupid things to occupy their hands. I had my husband stuffing bags with old newspapers and then I would unstuff them and he would do it again. Also I would put boxes of old junk in front of him and he would handle them until he lost his focus. Most of the time he would shadow me tripping me up and running behind me as I flew from room to room. Good luck and don't worry about self pity it is one of the only good things about moving,

Jill

[nanonthenet1]

Haha jill, you hit the nail on the head there, it's a case of thinking I've got one more thing sorted then I realise it's been unsorted, and he keeps telling me there is no rush......erm... I think there is.. X

[Heady in reply to nanonthenet1]

Does that saying "there's no rush" go with the terrority? Think I will need locking away if S says it one more time!!!

Lots of love

Heady

[nanonthenet1 in reply to Heady]

Well, I think I might be under arrest, Mr naughty decided to help, ended up falling on my perfectly packed plastic stacking boxes, he was ok, but the boxes, well, off I go to home bargains again tomorrow.....

[Georgepa]

Saturday Saturday which one is that they all seem the same !

[nanonthenet1]

Georgepa, maybe we might start a Saturday night fever.....