My darling hubby has slipped off the plateau he has been on for months and has changed so much in the last few days. His eyes have hardly opened since Friday. His position in the bed didn't change at all in the night and he woke up drenched in sweat. When we hoisted him up using the standing hoist, his legs buckled and although he still had a bit of strength in them, he was almost hanging. When we got him on his shower commode, he slumped forward almost in the foetal position. There were no thumbs up or down in response to questions. He had a shower, dressed and went in his chair. Despite this, he managed a full mug of tea, banana and ready brek for breakfast and a full corner yoghurt with his medication, without any coughing or choking. I've just put him back to bed to get him off his sore bottom and had one of those, I can't do this any more moments. It was so difficult hoisting him onto the bed with legs buckling and then lifting his legs up onto the bed. They were so rigid and it was almost as if he was fighting against me, but he wasn't, just stiff. He is now asleep, bottom exposed to the air with a sheet over him. I phoned the neuro-rehap team to see about getting a different hoist. I said could I speak to one of the four OTs we have seen before and was told none of them were there any more.
Our Crossroads sitter rang this morning to say she wasn't well. I thought she could help me get him out of bed.
I've no chocolate in the house and it's not Friday so will not drink. The 3rd load of washing is in the machine so I'm going to down tools, tell God I need His help and watch last week's Holby, gathering strength for the "get up".
X
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NannaB
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Oh, NannaB, I'm sorry. And I am with you; the stiffleggedness makes for an awful wrestling match, and my arms and back have been paining me greatly the past couple of days. Like yours, my guy was in worrisomely bad condition this morning, although yesterday was fairly decent. He was simply unable to get his balance at all, and was clinging to the bars as if rappelling down a mountain as I tried to get him washed and dressed.
Despite a couple of bad falls yesterday, including a smashed antique chair (with a seat covered by his grandmother's needlepoint, which I should have put in hiding. Gah. Another thing to blame myself for.), I would have said we had a fairly decent day. I had him out in his wheelchair raking leaves with me for an hour in the sunshine as a wonderful highlight of the week. He seemed quite alert and conversational through the evening, and I thought it was because of the fresh air and exercise.
Then this morning he was so frozen. So blind. And here I am at work. And he is alone. Insanity.
We have a home care agency coming this afternoon for an assessment. Obviously not a moment too soon.
Enjoy your show, NannaB. And I hope you get some chocolate soon.
Oh to be able to rake leaves together again. We always ended up throwing them at each other. I hope your guy is OK and safe when you get home. It is a worry being away from them.
I did get chocolate ...see my reply to Geargepa.
I hope the assessment goes OK and to your advantage.
Hey there, Mr. J! We are fine today. A good night's sleep and I'm feeling wonderful. My sister and her husband are here at the mountain camp with us, visiting from down south, and we have about 10 inches of fluffy snow. She has new snowshoes and was happy to be able to take them out for a spin. Mr. C is recovering from a small bout of pneumonia and is getting frisky again. We all had blueberry pancakes and bacon for Sunday breakfast and are enjoying the fire in the wood stove. We will be going out for a walk soon. Happy New Year to you and yours! Love, Easterncedar
NannaB you are always so good at supporting people on this site so what can we do for you . Perhaps it is a temporary blip - things do seem to happen like this with PSP - one day it is all down hill then things pick up a bit - I do hope so .Nobody could do more than you do for your husband and I am sure he appreciates it . You have coped with this illness for a long time and with your experience I am quite sure you will manage to deal with whatever it throws at you .Today you are down -tomorrow you will be strong again ( don't wait till Friday for that glass of wine ) .By the way running out of chocolate is a cardinal sin - shame on you .
Thanks Georgepa, it took me 45 minutes to get him from bed back to chair but I did it, whew! Didn't think I'd be a manual worker in my retirement. Haven't opened the wine yet; settled for "Comforting" Liquorice tea. Oh, and I did remember where I had hidden the chocolate digestives so I didn't eat them before the Uke group come on Wednesday. Luckily I bought a selection and they won't know there were supposed to be chocolate ones as well.
Yes, I think I'd like a vending machine with a variety of goodies. Not one that takes money though...finger print recognition .....that will stop those who shouldn't have access.
Ha! But really, I try to make sure there's always something sweet right out front and handy for him. Saves his tearing up the place on the hunt, for one thing!
That is interesting. My guy wasn't keen on chocolate, ( he was never a liker of anything creamy so food thickeners are a no no) , however, since he developed PSP chocolate seems to be the exception. My chocolate was always safe, but not now!
I understand that psp alters taste perceptions, so many folks develop an extreme sweet tooth or want spicier food. I like it that there's one thing I can provide that will reliably bring a smile to his face. And, knowing that keeping weight on might later be an issue, I don't care how much weight he puts on now.
Our local Tesco supermarket sells chocolate trifle. It's just right for C as it has only a thin layer of sponge cake which mashes into a thick chocolate sauce. C loves it, I don't think it is bad either.
There is just the worry of keeping his teeth in good condition. Our dentist has given B. some special prescription toothpaste, but he has still needed fillings.
Diagnosed September 2010 but noticed symptoms about 8 years ago. When we went to see our son in his new home 8 years ago, he rang me when we left him and asked what was wrong with Dad. He said C had barely spoken and when he did it was indistinct in places. He was out of work at the time due to redundancy and C put it down to anxiety. He did get another job when a company heard he was looking and rang him up. That gave him a boost and he seemed almost back to normal apart from several falls. After a year the job got too much for him as it involved long drives to different work places so he retired early. Had he not, he would probably have crashed the car, his driving had become erratic.
Oh NannaB, my arms are around you, trying so hard to give you comfort and strength. We all know you get down moments, but on this site, you have always been a tower of strength for us all!
Has he got an underlying infection? From what I read from you all, a sudden crash, is nearly always because of infection.
Nanna, on here you come across as the most capable woman in the world, now I know that can't be true, I expect you are laughing saying "if only she knew!" Well, of course I know, but it's times like this, all those caring words, you so kindly share with the rest of us, perhaps you ought to go back and READ your past postings. Know that you ARE a strong person, you HAVE coped with everything that this ######## disease throws at you. You WILL cope with this phase as well. You might be screaming HOW.??? Like you have with everything else, there is NO other choice. Colin needs you to be able to cope and you will!!!!
As Gerorge has just said, no chocolate is serious and wine is not just for Friday, but it can be drunk and enjoyed any other day of the week!!! Sometimes it's compulsory!
Nanna, you are in my thoughts, just wish I could do more than type a few platitudes on here, but equally, I know, just having your voice heard, helps! We have all heard you Bev, keep ranting, we will listen and get you through!!!
Hi Heady, I don't know how, because I "liked" your post but somehow missed it earlier. You know what it's like, start looking and then something else happens. Thank you so much for your love and support. You are right. When I read the bit about me being capable, I did think, "If only she knew" and I should go back and read my posts again and do as I say.
It's always difficult when they reach the next stage isn't it?. You get into a routine, doing things a certain way and then wham, something else hits you. I remember back to when C first became incontinent of urine wondering if I'd cope, the first time his bowels became out of control, the first time I had to feed him, the first time I had to use the standing hoist etc etc. He had been quite stable for weeks, although looking back, little things have changed but not being able to stand with a hoist is a biggy but I know I'll cope once I have another way of lifting him. We all cope don't we?
I thought about an infection and took his temperature once he was settled in his chair. It is normal and he is eating really well but I'll get the GP if it does go up.
Thank you for all your love and support. You and the others have kept me going today. Several of my friends are going through family problems at the moment and like to off load onto me which I don't usually mind as it gives me other things to think about, but not today. I purposely haven't phoned anyone but feel I have had a house full of supportive, loving friends.
Thank you Heady, and anyone else who reads this. I don't know what I'd do without you all.
I'd be lost, utterly lost without this place and you all. I'm so grateful for all the loving kindness, comfort, humor, advice, sympathy and cheer. Count me in on that group hug, please. Love, ec
NannaB, you and Heady have been a great help to me since I came onto this site. You understand, as you have been through the tortuous and stressful changes of PSP. I rely on you two greatly for your wisdom and support. Thank you for this. When you have these terribly stressful times, you may feel weak but in the end you always come out fighting and are a fantastic example of human love and kindness. Sending love, hugs and thanks once again
Thanks for that Robbo. I tell all my friends this site has been my life saver. Everyone has something to contribute and we all understand each other. Long may we be together.
NannaB I wished I lived near you, would sort you out some chocolate, feeling sad for you, this illness is so hateful, always throwing something different at us. Saying a pray for you, and sending you a big hug, you are always there for everyone, just wished we were near enough to you, to do something for you. Yvonne xxxxx
Thanks for your prayers, thoughts and big hug. All are greatly appreciated. Wouldn't that be great to live near each other. I think there should be a PSP village, built in a beautiful place, totally adapted for our darlings and with a big communal lounge where only happy thoughts, laughter and group hugs are allowed. Somewhere we could all help each other and ignore the professionals when they tell us to do impractical things that they have read about in books and on courses. It will have its own laundry and laundry staff and we would all have cleaners. Loud speakers could be used to direct staff ; janitor to villa 6, mop, bucket and rubber gloves required. A hydrotherapy pool would be good so when our darlings are tucked up in bed after their pool session, bubbles would be released to make it into a hot tub for us. I wouldn't even worry about you all seeing my wobbly bits, as my grandson calls the bit of extra weight I carry.
When I came to the bubbles part, I thought, "now you are talking!!!", another job for the staff, open the bubbly, while a load of stressed out old Carers, become silly little boys and girls again!!!! EC, is right about the noise though!!!
Just been to a friends and family day, at the weekend. Perhaps, instead of the format they use, we could just have a lovely weekend together, chatting, drinking and most of all, laughing!!! Quickjel, if you are reading, thats your mission for the day!!!
Oh NannaB sounds heavenly, I would not care who saw my wobble bits also. Oh wouldn't it be lovely to have someone mopping up and doing the washing, heaven, sending you a great big hug xxxxxxx Yvonne xxxxxxx
Oh that sounds grand NannaB . There are alot of billionaires out there...that's why they're billionaires...they keep it unto themselves.
Actually we should write a grant for monies for a (respite?)place for neurological disorders and their family....They may have different symptoms but they all have the same physical needs and the more inclusionary we are, the greater the grant would be....Maybe we can get GeorgePa to write one up....
Hi NannaB. So sorry to hear about the latest difficulty. I think Heady is right in mentioning that there may be an infection somewhere. Hubby was exactly as you describe C and it turned out he had a chest infection. chocolate and wine is a great combination, for any day of the week (wine in moderation!). Lots of hugs, my thoughts are with you. Tomorrow may be better.... Love Maddy xx
Hi Maddy, I did think of infections this morning as he was so wringing wet but took his temperature after his shower and it was normal. I'm hoping it isn't one as I couldn't cope with the colitis returning if he had to go on antibiotics. As his appetite is normal I think he is OK but I'll keep checking his temperature and call the GP if it is raised at all.
Hi nannaB. Hope all is well with C and that he can avoid antibiotics. Sorry to say but Hubby did have a infection without a temperature. please do not worry about something that may never happen. Love maddy xx
Hi Maddy, a GP turned up unannounced at 5.30 this evening. He isn't our doctor but we know him as we used to meet dog walking. He had seen the photo the DN took and was prescribing anti b. He has emailed the prescription to the chemist. I explained what happens if he has them and he said he would have a look at the sore. After looking, he said he didn't think it was infected. If C could tolerate the meds he would prescribe as a precaution but because of the side affects, he told me to mark the edge of the rash with a pen tonight and see if it had got bigger. If it does, he will have to think again.
Married 43 years and it's the first I've ever drawn on my husband's bottom.
The GP told me to use a ball point pen. I said I'd probably give him blood poisoning. I told our night carer what I had to do and to help me, she did it without me knowing. Instead of a few marks at regular intervals, she put little crosses, close together on the normal skin around the rash. It looked like modern art, a circle of crosses looking like a barbed wire fence, a red rash and then the stabbed over sore.
So sorry to hear of your problems Bev. You are always so strong and sensible when the rest of us are having a wobble. As we DO live quite close please do say if there is anything useful I can do apart from send supportive thoughts and lots of love.
Thanks Jean. Gin and tonic, what a brilliant idea. I usually drink wine but have both gin and a bottle of tonic in the cupboard so will try that tonight. Yes!
Not sure you'd appreciate the uke though. Sounds good when we are in a crowd but if I were teaching everyone, you'd hear the wrong chords. Not a nice sound.
God, these fine people need Your help; as we all do. Please give Colin strength to help himself be as independent as possible and to be as comfortable as possible.
Lord I ask that you give our dear sister in PSP strength as well. comfort her spirit Lord and help her know You are always there. Why do we have to go through these things Lord? Because, this world is not our home and we are just passing through....As we pass through this world help us , help NannaB and Colin, trust that you will make all things right in Your time. amen.
Yes I did too! I have read all the other posts here and I almost feel like I am with you all sippin on bubbly in hot tub bubbles while our mates are having a grand time of their own! We are laughing and encouraging and not worried about tomorrow or even getting out of the chair.
Thanks for your concern and support. I do have good support from the hospice and C goes to the day centre every Friday. They said they would take him as long as he could get into a wheelchair and get there. I also have Crossroads twice a week, except today when Jenny was ill, and night carers who help me get him up. The hospice in the home have said they will give support but I'm not sure what. Compared to most, I have loads of support and when I was offered hospice in the home on Friday, told them I feel greedy when others seem to have little or nothing. I get lots of help but not 24/7 and as we all know, it's the times we are alone and struggling that we need help and have those, can't do this anymore moments. For me it's Cs physical needs that are the challenge. Although he has lost weight, he is still a big man compared to my 5' 4". All his limbs have stiffened up so just getting him dressed is exhausting.
The hospice won't take him in for respite as we have CHC and they don't have the staff to give him the attention he would need but I wouldn't leave him now anyway. he has been away on three occasions and became so depressed his condition deteriorated each time.
It was a good idea of Heady's. Get in touch with the hospice. They have helped us a lot in different ways, including complimentary therapy for me.
I could get respite elsewhere but not the hospice. I think it is because it isn't NHS. They offered me respite last year and then rang and said they were sorry they couldn't cater for Cs needs. I was very cross and confused, if a hospice couldn't cater for his needs, who could. I had booked to stay with my son so rather than cancel, booked C into a home that offered respite near our son's house. I intended paying. I rang SS to say I wouldn't need a sitter for the week and was told as he had CHC, the home I'd booked him into would be paid by them. I told them about the hospice not being able to cater for his needs and was told they had phoned SS and asked if our night sitter could sit with C there, at the hospice. SS said it wasn't their policy to send staff to the hospice. The break worked well for me but C hated it. We took him out at ten every morning and returned him in the evening so he could spend the day with all of us but he cried every time I took him back. He also fell several times after I'd dropped him off and became incontinent as no one answered the bell quickly enough. C couldn't manage to 3 -4 hour car drive now so won't do it again anyway.
Now that I have said my prayer for you....by the way I hope I did not offend you or anyone else......But I do want to encourage you to keep on keepin' on....B has had some slumps and I have been more depressed than usual thinking of his slow slippery slope....But who knows, maybe C will feel great tomorrow....Maybe it's the barometric pressure! I keep thinking Bruce is going to do better. but if one doesn't want to eat one loses energy. I am glad C is still eating. keeping his energy up is primary to keeping healthy ......Also touch is essential. massage him and stretch him gently while he is in a low state. B can barely walk but he gets some exercise in....I have to bitch at him to go to gym. but he's back using his walker. Eyesight or ability to open eyslids is worsening so it's hard to see AT ALL what's happening around him.
Anyway make sure he is still "active" maybe read to him or sing and definitely stretch those taut muscles. he does not have to be out of bed, so one limb at a time might be easier for you. As you know you and C are in my prayers.
And, well, I thought it was law after WWII, that all households in England have a ready store of chocolate, and ....silk stockings.......well maybe that was in the days of Vivien Leah and Sir Lawrence Olivier. et al. hahahaha
Take care get ya some chocolate (and not one to push alcohol , but maybe a glass would settle yourself [as long as it's not the third hour of the day ! Acts 2:13-15]hahahaha)
Oh, NannaB, your post brought tears to my eyes, your lovely man, I do hope he will be feeling stronger tomorrow, you are such a special lady the way that you are so strong for everyone and I so admire your patient calm approach to things.
This week my lovely husband has also fallen from the plateau he has been on, although not as far ahead as your dear husband.
Like everyone here, I am thinking of you and sending a hug and in my prayers xxx
You are special as well Nanonthenet (I love that name). Anyone caring for others has to have something special to keep them going and all those being cared for are special people too, putting up with us when things don't go as planned.
I hope your husband doesn't slide too far down the slippery slope but finds another plateau soon.
My night time thoughts and prayers are with you both too.
NannaB laying in bed and thinking of you, sweet dreams. Hope Colin is more with it tommorow. Just after 9.15 George was sitting in his chair, he started to cough, passed out and ended up on the floor, glass broke on the table as he went down, could not get out elk because of the glass, my our daughter who lives near by, our son in law, came and helped me get him up, while he was on the floor,me was calling out for his mum. Well Steve helped me get him to bed, hopefully he will sleep, we have had to bad nights since I came back from my week away, which seems like months ago, not last week. Sweet dreams everyone hopefully. Yvonne xxxx. NannaB did you get any chocolate? X
Hi Yvonne, is George playing the wounded solider, playing you up like a child would, when you have been away? Or is it that, you had conveniently forgotten, how nights were, while away? I would consider both, before starting to get worried. Don't want you back to your stressed out self, too soon!!! My money is on a bit of both, still tiring, but not the end of the world. As they say, everything as to be paid for. Keep taking the deep breaths, close your eyes and feel that sun!!!!
Thank you Heady, I think it is a bit of both, I am so tired, he fell over again today at 5.45, trying to remember the holiday, but it is getting harder and harder xxxxxxx
Oh dear, did George get cut? I see what you mean about the Elk. Colin frightened the life out of the carer tonight. She went to clean his teeth and freaked out when she saw blood seemingly coming from his eyeball, trickling down his face. He had a sty which had burst but it was blood not pus coming from it. She thought his brain was bleeding. Maybe that was pulling him down. Hopefully he'll buck up tomorrow. Sleep well and sweet dreams to you too.
No NannaB he did not cut himself, thank god, but he was calling for his mum, then he went over again at 5.45 so tired. Hope Colin is better today. Yvonne xxxxxxxxx
NannaB i am going through a similar phase. my husband was taken back into hospital on sunday he too was sweating a lot and was very confused but his temperature was normal ??? and so was his BP.He is very confused and he is doing very strange things he keeps touching my hands and face then he starts picking at his bedclothes.He is hardly able to talk.They have done a brain scan so hopefully we should get the results today.His urine is very dark and has blood clots in it but the doctor didnt seem worried about that.they have put him on IV antibiotics.I hope C is feeling better and that you have had your glass of wine and bar of chocolate Take care xx
Oh dear. I'm sorry your poor husband is in hospital and you have all the worry. Make the most of undesturbed nights so you have the strength to care for him when he returns. My hubby's urine is always very dark, caused by the colitis medication he is on but there is no nasty smell or clots. C also touches my hands but he has always been very tactile. He also has to have something in them i.e bedclothes, hankies, etc but talking with folk in past posts, lots of PSP sufferers do the same. It's a bit like Altzheimers sufferers, pilling or rolling small pieces of paper between their fingers.
To me, your hubby sounds as if he is doing what mine has for some time which seems to be part of the progression. I hope he is soon home with you.
I had a G&T and chocolate digestive biscuits...lovely!
That's how John is Deb , you will need ceiling hoists . . Better for him and yourself .
Don't despair John has days when he doesn't respond and is a rag doll . I am sure he will bounce back , check urine and keep bowel open . Although I don't think he gets too much trouble with that .
I have a meeting today it it's district nurse and social worker . It appears I have not got ful CHC but joint package . As I thought I would . .. Social worker very disappointed I know . The ones in the ivory towers are not up all night are thy , need to live with us for a day Big hugs I know how frightening and confusing it is .
OT has just left. We are going to try a mobile swing hoist that has a sling he can sit on when in his chair so I don't have to struggle to get it on. If it doesn't work, it will be a ceiling hoists. I've never heard of joint package. I'd be interest in knowing how that works and hope you don't have to contribute too much. The OT asked me who our SS care manager was. I gave her the name and she said, no, that's the CHC manager. I haven't a clue who the SS one is.
The district nurse is coming this afternoon to look at Cs sore and I've asked her to bring a thermometer to take his temperature accurately re infection somewhere.
Glad you were able to get OT so quickly Bev , I do hope the new hoist and sling will help . Will u be able to commode him with that as well .
I have to keep putting i on and off John and they can be. Bit heavy . In fact it's wearing and they are trying some newer ones . One was delivered this ,morning it's huge and I don't think it will be at all suitable . I will have to wait for it to come and try it .
I am pretty use to use them but I am not so sure about this one .
I have asked if they have a lighter one that I can leave on at all times and also be able to commode with .
The ones we are using go u d the arms and he is hoisted so often it does hurt him . I thought they were going to try and get home one that he could sit in and go outside the arms .
He had his INR done this morning. While here I asked her to check urine . I have a box of the sticks to test .
Always comes up with some protein but the ketones are up as well which can be diabetes ,I asked if it could change each day so she said she will come again next week to check it again .
They are inclined to put everything Down to the Parkinsons and age . I am vigilant as I can be . A bit like a dog with a bone lol .
The social worker we have at present I don't think will be ours after the assessment , you have one for a while and then they sign u off , stupid isn't IT .the next one doesn't even know you .
Does c have to have his bottom dressed at all . I have had dressing from the district nurse but because I use them as a barrier if I see any sign of breakdown , I went on line and bought some myself . They are good .
Will let you know later about the meeting .
It's never ending isn't it . Carers b here as well soon . John is sat on commode at moment so he will be back in his chair by time they come so nothing for them to do . Never here when needed
I never even thought about whether I will be able to get him on the commode. I do hope so. She said she would order a sling he can keep on the chair or bed so I don't gave to struggle each time but it will take longer so a different one will come first. I'll let you know when I've tried it. They haven't dressed his bottom yet. She said they don't like dressings but may do it tomorrow when she comes with the big cheese. I'll keep you posted.
The Ots a very good aren't they. Ours has been excellent with us . I couldn't npmanage the swing arm , we still have carpet which made it harder for me . On top of that I am older then you
The only downside of the ceiling Ours is portable so no damage to the house but it has posts and in our case the feet are long . Some are not and have a longer run .
I wouldn't swap the one we have it is lighter to use . Once I learned how to use it it's easy , good to give pressure relief especially if C keeps the sling on .
I can even take off the trouser off and put them back on .
I a, waiting for the social worker she doesn't drive and has to use the bus for all her calls .. Not juice in this weather .. She is very nice and easy to talk to .
The Oarkinsons nurse had mentioned the joint package before the
I wouldn't be able to use the hoist on carpet. The one we have is heavy enough on flooring. I think a ceiling hoist will be needed eventually. It can't be easy using a bus for calls. I hope the bus service where you are is better than ours. It's very wet and windy here today. I wouldn't fancy waiting at bus stops. She must love her job. I hope a good package has been worked out.
No do not try and use a hoist on carpet . We did have on a quite a while but I never moved it . It stayon one side and could just about manage to get in wheelchair at the time I would wheel him to the hoist and hoist off wheelchair .
That's until h could weight bare no longer .
I had to get rid of a large dining table and sideboard to make room do the hoist to stand , that didn't worry me I bought a smaller folding table and a smaller unit .
he could stay that way though .
The stress won't help the Tinnitus .
It's very wet and windy here as well .
I felt so sorry for her . She told me she has always used the bus and doesn't think twice about it .
she and the district nurse who is also the coordinator were here for a few hours . I was quite tired by the end . It's stressful isn't it .
Told me they are going to try and again . It doesn't look like it had been coordinated very well . They both apologised to me . Everyone is so pushed these . When staff leave they are not replaced and their load gets heavier .
I end up feeling sorry for them and not me lol I am a bit of a softie .. Lol. They kept in all the time about how marvellous I was and that I must th and always say it as the worse possible day .. That's the bit I find very hard Bev
It's not my way. I know they are right . Today they went through it all again . I think they have got a better picture of it all now and John was Jn a very switched off mode all the time they were here .
I still don't really understand completely . I have never had a financial assessment so have to pay . It only £60a week here Jn Wales and I don't like them nosing into our financial affaire. We have savings because we have been unable to spend it ..
The health a
NHS side of things will cover half of any costs and the same goes for the social care .we won't lose the attendance allowance though .
Because it not the full CHC we still keep social services Ots etc .. The OT sent us a new sling to try again but it looks huge . I've not had a chance to let her know it's arrived . I don't think it's going to be suitable though .
I told her I have spoken to other who have the CHC bug mostly in Wales .
She told me . That Jn Wales it changes from town to town even and they keep setting the levels higher .
They are doing their best and are on my side .
It's the other on the lane. That have the last word .
I will let you know when I know more .
I kept waking up last night mysel it was in my mind with them coming .
With the full CHC we still have the same professionals as we did before. Today we have had the OT, the district nurse and at 5.30 pm the GP turned up. He had seen the photo of Cs sore and wanted to come and see it. I had to hoist C up and the GP said he didn't know how I managed to keep going. I said the same way all my internet friends keep going, sheer determination and love.
Anyway, there is no infection but I've got to put pen marks on the edge of the rash tonight and if it has spread by the morning, have to contact him again.
Every time I wake up I put the radio on and set it to go off in 30 mins. Not music, I listen to LBC and it's all call in. It's usually so boring I'm always asleep before the timer switches off.
easy a matter of fact the d nurse did tell me it is different in other areas .
our OT is through social services but if we did get full CHC it wouldn't be through the NHS ots and physio . nothing straight forward .
that's exactly what it old them today . I am no different to the many others who do exactly the same things and why we want to support as many others in the same boat . only we know how very difficult it is
we get tired frustrated and think we just can't go on . we also get up and think . here we go again . I have found it very very difficult to let go doing it myself .
have they dressed Cs bottom . I use the baby barrier cream Bepanthen .it suits John better
Two are coming here tomorrow to look and maybe will dress it but the one who came today said they don't like dressing it. I have put biro marks around the rash to see if it gets bigger by the morning. Morning carers C have told us to get medihoney. He said it did wonders for a gash on his horses leg. I mentioned it to the DN and she said it is good and will get some. I know from the Internet it is expensive.
Full on but good I hope. Not too bad here apart from a strained back caused by touching my toes to keep me fit. The whole house smells of the heat rub I've massaged into it. It's not so bad tonight but was excruciating every time I got him out of bed; 3 times as trying to keep him off sore. He is at the hospice tomorrow so I'll get out of the house, I've only been out for an hour since last Friday as the Monday sitter was ill and when Wednesday sitter here, I had to stay in for DN.
Don't know if you saw my wardrobe collapse in the night. I just had to find place to put them to get into bed tonight lol happy days Xx hope u get out tomorrow
Sorry to hear that things are a bit more difficult for you both at the moment.
We have had ceiling hoists fitted, one in the bedroom and one in the living room.
I haven't used them fully yet as R can just about still pull up from his chair onto the Sara Stedy that we have been using for transfers.
I have used them when R has been too tired to pull up or has slipped out of his chair onto the floor.I know it will only be a matter of time now before the hoists will have to be used all the time but I am glad that they have been fitted, ready for that day.
Hey, I read one of your posts when you mentioned that you play the ukelele.......I too am learning to play the Ukelele.....my daughter bought me one from my husband on our anniversary, it gives me something to do when I have put R to bed! I love it......perhaps we should all learn to play and then we could have an online ukelele group!!
Hi D, sorry only just seen your post. I don't know how I missed it. An online group sounds good but I don't sound as good on my own as I do with a big group. We have 10 players here yesterday afternoon. I had to put C to bed to get off his sore bottom but he still heard us. Are you able to play with others? I live in a village but there are now two pubs which have uke jam nights regularly. I can only get out to one once a month but others in our group go every fortnight. The 6 women in our group come here on the 4th Monday of the month but we do as much chatting and laughing as playing.
That sounds such good fun in your house, probably just what you need at times! I am trying to encourage anyone I know, my grandchildren, my children, my friends....all to have a go at playing the Uke. They can be bought quite cheaply to begin with and doesn't it give great satisfaction when you hear a tune that you recognise coming from that cute little instrument!!
Maybe I'll have my own home grown Uke group oneday......
You could be like the family VonnTrap but with ukuleles. My brother and his wife are coming to stay in a couple of weeks and he is a very good musician playing many strings instruments. I only strum but he plays individual strings and sounds really good.
No, easy. They are teaching it to primary children in school now instead of the dreaded recorder. I tried to learn the guitar years ago and abandoned it after a few weeks, hopeless, so if I can play the ukulele, anyone can.
As NannaB said, it's easier than the guitar because the ukelele is so small and cute....great fun, though.I don't play in a group, I am teaching myself but can play the guitar so I expect that helps a bit. I would say just have a go, very good for the soul making music!
OT just left. She is ordering a swing hoist. If it doesn't work out, it will be ceiling hoists. District nurse coming later today to look at sore. It looks as if it is healing well but this morning the good skin around it was very red so I am a bit concerned. This morning he was in exactly the same position in bed that we left him in. He hadn't moved at all so he didn't lie on the sore.
Everything quiet here now ,apart from my tinnitus. Think I'll have to put the radio on again.
Exhausted already! The extra help started today, which was great, as its the same girl, coming in for an hour to shower S. But that meant, I had to be up and take the dog for a walk. I am not a morning person!!! Then we had some one from our Company, drop by to fill S in with the latest, after that the Speech Therapist came to show S how to use new app she has found for him. Not even 1.00pm yet, next appointment 1.30 for his personal trainer! How did we ever manage before PSP?
A word of advise, any unnecessary equipment, make them take it back NOW!!! I am going to sort my spare bedroom out soon, it's full of unused stuff. Not sure how to do it, but I do know, it will be an impossible task, later! Someone I know is going through this at the moment. I thinking about you and sending love, if you are reading!!!
Phew Heady. You must be exhausted. I hope you get a bit of rest this evening. I'm hoping to settle in front of Holby City, oh blow it! It's Tuesday, bin day at 7am tomorrow and it's pouring with rain and windy. Why didn't I put the bin out earlier. Holby triggered my memory.
Most of our equipment has a sticker on giving the phone number to call if you want it collected. I have got rid of stuff as it is no longer required, except for the perching stool which I find very handy to sit on when painting. My "studio" is the side work surface of our kitchen and the stool is just the right height.
When I returned the original commode, I had taken the footrests off. Unfortunately, when they collected it, I gave them the footrests belonging to the wheelchair we had bought, by mistake. It was some time before I noticed and they couldn't locate them in the warehouse. Beware of what you give back!
Don't you just hate Bin Days! Our was this morning, thankfully, as its really blowing tonight! I think it's the one thing, that really hits below the belt, reminding me, I am on my own! It's not as if S did it anyway! Always was the Monday evening row, who was going to put the rubbish out. Usually ended, us both doing it. The bottle bin use to be a bit heavier than it is now, so needed the two of us!!!
That's good. I finally got ours out a few minutes ago, 11pm. I made several attempts but had phone call, one from our eldest who was on the phone for nearly an hour, commode session, then C to bed. Fortunately it was only one bin this week. I must remember earlier next week.
Its true that little things get you. Today its bins, I've 2 light bulbs gone, I've had to sort car tyre pressures. It just feels a never-ending burden.
I feel bad because C was being silly and joking at the wrong time. I got irritable and then feel bad about that !!
I'm not telling C you are drawing on C 's bottom - he'll want some !!
Hey Nanna, have you seen how many replies you have got for this post? Must be 98 now, as I saw 97!!!!! That must be some record.
Hope you realise it's because everyone loves you and are very thankful for the help you always give, when one of us is in trouble. We are all reaching out to you, to send love and comfort. If only our group hug for you, could provide some real practical help. You know we are all here for you, ready to listen, whether on the site or privately on the message page!
Come on folks, Nanna needs a couple more replies to reach the 100!!!!!!!!!!
Oh Heady, it's probably because I am replying to most people, but thank you. Will this one be 99? Before discovering this site I could never understand how folk could meet a life long partner on the Internet. I know two people who met their now wives on the net and they said they really knew them before they met. But since finding all the lovely folk here, I understand how it happened.....not that I plan on marrying anyone here though of course. It's just so lovely being part of this lovely big family.
I reread your post. How is Colin? Did ya'll get that new hoist and do you have new team to help? How are you doing darlin, you know how we are , scared to death of the decision about the PEG...though I really don't know what the doc has to say about it yet....anyway I'm still praying for you...for all of us.....hope you are having a good day
Hi, we don't have the new hoist yet, these things take time, but C seems to have got some strength back in his legs so we are still managing. When the new one arrives, I have to wait for the OT to show me how to use it but if I have room, I will try to keep the old one as I want to let him stand for as long as he can. Like you and the PEG, we don't want our darlings to have things that aren't necessary yet. I have to be prepared though as if his legs give way completely, I'll never be able to move him. While C was at the hospice today, I realised at 11 am that I hadn't had any breakfast so I took myself into the garden centre and had a full English before going shopping. I'm frequently praying for all of us as well.
hang in there nanna I know that you can cope matey cmon colin stop muckin about matey or else im not going to tell you about \the flies I threw a saddle over do you remember that story that i told you mate give us the thumbs up if youj remember it mate see yer mate sorry about typing matey I have to\keep pushing my eyes open see yer peter jones q.l.d. Australia pspbloke nanna
Hi Peter Jones. I think it is brilliant the way you (and Jill) keep in contact with us. It must be such an effort. I was going to suggest matchsticks for the eyes but realised that was a silly suggestion. I don't want to be responsible for a nasty accident. I read your post and when I asked if he remembered your fly stories he opened his eyes a fraction and grunted, which I know means yes. Sorry to say he has lost the ability to put his thumb up. When I say thumbs up he moves his thumb a bit but that's all. I still know what he means though.
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the time has come - 3 years from diagnosis
Not knowing how to stand.
