Spitting feathers......: ....for a change... - PSP Association

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Spitting feathers......

Heady profile image
57 Replies

....for a change!!!

S decided to do some floor hugging last night, as I was opening the door to the Carer. He fell off the toilet, well he got up, trying to do God knows what and ended up in a heap on a very cold tiled floor!

Of course, the Carer had to go in to procedure mode, called her office, who told her to dial 999! I probably could have got him up, but wasn't allowed to try.

The paramedic arrived, quite quickly, had a go at the Carer for calling him, which I thought was a bit unnecessary, we are always told to do that. Got him up, wth the help of an Elk, did his obs. Didn't bother to examine him, in fairness, I didn't think it was necessary.

This morning he woke up, bruised back and ribs. Hurt to breath and cough. Left it until this afternoon, but the pain was getting worse, so called the doctor. Again, for once, the doctor said, nothing they can do, but it would be idea to check to see if he had broken a rib, so we could manage the pain a bit better, so quickly arranged an X-ray at our local minor injuries clinic. Dashed down, they were about to close. Honestly I was treated like ........!!! Why did I come? Don't do X-rays for rib breaks! All this in the waiting room in front of everyone!!! But of course, they had to do it, but kept on at me, That this shouldn't be done.

Kept smiling sweetly(!) the nurse came out, tried again to discuss results in front of every one, but was waiting for her and said could we go somewhere private. They couldn't tell if he had broken the rib or not. It looked a bit furry, apparently that means it could be a break, but he hadn't punctured his lung. We were sent away, not exactly with a flea in our ears, but not far off. At no time did they ask his history, what medication was he on, took any obs. I took a sick man, in a wheel chair to a hospital and they didn't even bother to ask what was wrong with him!!! I had to force the nurse to even look where the bruise was, so she could look at the same place on the X-ray!

I realise there is absolutely nothing they can do for a broken rib, but surely it's not rocket science, to check out a man with S's medical history, so they are fully aware of what might go wrong. He is sat here, struggling to breath, is in pain, can't cough. It only a matter of hours before infection could set in and I am treated like ..... at A & E!!!

Ahhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh!

Lots of love

Heady

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Heady profile image
Heady
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57 Replies
nanonthenet1 profile image
nanonthenet1

I'm not surprised Heady, had similar experiences, it's just unbelievably frustrating , what do we do, my husband is now in a nursing home, I tried so hard but too many health issues that I just could not deal with, still fighting his corner there and always will, this PSP makes us fighters but, sometimes, a day off would be so welcome .

I really hope your hubby will feel better soon and get the help he needs , lots of love xx

Heady profile image
Heady in reply to nanonthenet1

That's just it, Nanonthenet, he's not. None of our loved ones are! You try to be pro-active, because it IS the only way to stay on top of PSP and what help do you get. NONE! Just the advice, not to slam the door on the way out!

Lots of love

Heady

nanonthenet1 profile image
nanonthenet1 in reply to Heady

slamming doors sounds like a good idea, they are taking all of our hard earned pensions and savings to fund my darling man in the nursing home, xx

Georgepa profile image
Georgepa

The merry-go-round of PSP eh Heady always something to cheer the endless days up .If we had a normal day we wouldn't know what to do with our selves would we .Like hell we would !

Heady profile image
Heady in reply to Georgepa

Yeah, to be able to drink a glass of wine in peace, not thinking, I had better stop, don't want the Carers to get the wrong idea, or worse, not be able to drive to the dreaded A & E. Well both problems can go...... tonight, I have had more than enough, not wine, I am still working on that!!!

You OK? You sound how I feel!!!

Lots of love

Heady

Georgepa profile image
Georgepa in reply to Heady

Started day getting V into sling and whizzing her across the ceiling to commode.No result back across ceiling to chair . Gave V breakfast took forever and a day . V had not peed since Wednesday afternoon and district nurse said to call so did and left message .Carer arrived ,whizzedV back onto bed washed dressed. In the middle of dressing D. Nurse called to discuss fitting a catheter and would call round .Finished dressing V got her in her chair using hamock sling . As soon as she was settled she wanted commode so back up to ceiling and onto be d to change slings and remove trouse r s etc put on commode sling and transfer back to commode whereupon peed enough to cause a tsunami in the Indian ocean . Back onto bed change slings re dress pants trousers transfer to chair and wish I was dead .Phoned D.Nurse who said please measure all output for the day and take sample to surgery .So out with my kitchen measuring jug -hasten to add not used much in the kitchen these days. Spent some time trying to convert pints to metric as D.nurse not familiar wth pints .Gave up and thought sod it .Speech therapist arrived at one to observe V eating and drinking which V did impeccably if slowly,not a choke or splutter or sneeze with a mouthhfull of food in sight. S P suggested buying in some pre cooked pureed .meals ,looked at the catalogue and realised the pricesfor one meal were more than I would pay for a whole organic chicken .Smiled disarmingly at her and said what a good idea .Took V to hairdresser in the afternoon and nearly died of heatstroke pushing the wheelchair up a hill as I had forgotten to charge the motor.Chided myself with silly me or words to that effect.Went shopping in Aldi -forgot my list bug... bug.. bug... came home V wanted commode here we go again same routine . Dry run fantastic back on bed change slings ditto ditto ditto and so the day goes on . Sitting with Vnow as despite sleeping pills she wont go to sleep unless I stay in the room .All tuckedup botty blotters on lights out ,andsoothing jazz playing her to sleep.Guess what - yes you are spot on she wants the commode .Slings at the ready and bet your bottom dollar it's going to be a dry run .Well thats my day fun and laughs all the way really looking foreward to tomorrow .

Georgepa profile image
Georgepa in reply to Georgepa

PS forgot to mention she fell out of her chair whilst I was washing and ended up in a heap on the floor tangled up in the in situ sling.Getting her up using the ceiling hoist was a tour de force.

goldcap profile image
goldcap in reply to Georgepa

I am laughing so hard tests are rolling down my face! I am exhausted just reading your post! You write so well. I know what you are going to be in your next life!

Sorry you had such an exhausting day but thanks for the entertainment! Though sorry it was at your expense :)

Best, ( And take your vitamins:)

Jayne

goldcap profile image
goldcap in reply to goldcap

Tesrs

goldcap profile image
goldcap in reply to goldcap

Tears!!!

Georgepa profile image
Georgepa in reply to goldcap

I quite liked "tests"

Satt2015 profile image
Satt2015 in reply to Georgepa

Oh Georgepa

Your style of writing is brilliant but equally you sound like another NannaB, a walking miracle! You deserve a medal and more! Hope today's a better day! X

Nanny857 profile image
Nanny857 in reply to Georgepa

I'm speechless Georgepa, what a hectic day. Hope the last few days have been slightly more sedate. Nanny857 x

Jafarrar profile image
Jafarrar in reply to Georgepa

Oh ! My! I'm totally exhausted just picturing this. Bless you. I transfer my husband with a wheel chair he can't walk or stand on his own .lts getting harder to transfer him he has a lot of false bathroom trips it's a challenge. Sounds like you have a good set up.

goldcap profile image
goldcap in reply to Georgepa

Second that!

Satt2015 profile image
Satt2015

Awe God heady another note nightmare neither of you need and surely not long til your respite?'

An utter disgrace the way you've been treated! Is there any point you putting a complaint in? Not really, doubt you have the time, energy or inclination?!

All I can do is send you the hugest of hugs and tell you I'm thinking of you both!

Bloody Psp we hate you!! X

Heady profile image
Heady in reply to Satt2015

I feel like writing to all n sundry, but who is going to listen? Who Is going to care? My sister wanted to go back in and turn off a few lights, but what good would that have done? There are battles to be fought and battles to be won. We have to save our energy for the ones that actually matter. As long as S doesn't get a chest infection, he will be fine. Or like what happened to my brother in law a few months ago, after receiving exactly the same treatment, a ruptured spleen! BUT OH how I hate every minute, every second of pain, stress and pure frustration, that this bloody illness puts S and I through on a daily basis. (With a "little" help from the professionals!)

Lots of love

Heady

Satt2015 profile image
Satt2015 in reply to Heady

Agree heady no point in wasting your valuable energy! Just concentrate on S and your sanity!

Let's just hope S doesn't have any after effects!!

Hope you've got through that 🍷 x

Jafarrar profile image
Jafarrar in reply to Heady

God bless you, I try to pick my fights so to save my energy for the things I have to fight. Love Jenny

Robbo1 profile image
Robbo1

Oh Heady ! Give yourself a pat on the back for not commiting justifiable homicide! Sending hugs. X

Georgepa profile image
Georgepa in reply to Robbo1

Is there such a thing as justifiable wifeycide ?

abirke profile image
abirke in reply to Georgepa

Oh poor Georgepa!

jzygirl profile image
jzygirl in reply to Georgepa

If it the same as infantasis it's only aplipical in the 1st six weeks. Janexx

Robbo1 profile image
Robbo1 in reply to Georgepa

No. But I can understand why you are asking. PSP takes us to the limit , doesn't it? Big hug. X

goldcap profile image
goldcap in reply to Georgepa

Ha!

Yvonneandgeorge profile image
Yvonneandgeorge

Oh Heady so sorry to hear what you have been through today, sending you a massive hug, let's hope S is feeling better in the morning, and it does not lead to anything serious. They should be ashamed of themselves for treating sick people like that, they more than likely just wanted to go home, get you in and out as quick as they could, can't believe they didn't ask what was wrong with S, disgraceful. Sending you lots of love Yvonne 🍷🍷🍷🍷

Heady profile image
Heady in reply to Yvonneandgeorge

You have to wonder what planet they are on, when they see a person in a wheelchair and don't ask why?????

Lots of love

Heady

jillannf6 profile image
jillannf6 in reply to Heady

i gagree h

ol jill

xxxx

easterncedar profile image
easterncedar

Oh Heady, you must have been exhausted when the rage adrenaline wore off. I can't believe the carelessness on display, and how you managed to keep your cool. You are a hero. Lots of love back atcha. Easterncedar

Heady profile image
Heady in reply to easterncedar

You are right, I am so so tired. Can't even take a pill tonight, in case he needs me. Roll on Saturday and my respite, if I last that long!!!

Lots of love

Heady

jillannf6 profile image
jillannf6 in reply to easterncedar

i agree ec

lol jill#

xxxxx

easterncedar profile image
easterncedar in reply to jillannf6

Hey, Jill! I've lost track of time. Did you have a good holiday? Was the weather fine and did you see anything interesting? Love, Ec

abirke profile image
abirke

what were you doing at the Washington Regional Emergency here in Arkansas !?

Surely there are not other emergency clinics like Washinton Regional

s that treat their patients like dirt on the carpet....oh no say it aint so Heady!

Im sorry this happened to you . Now all you can do is monitor his breathing, and temperature since infection could be a real possibility..... You might google how to take care of bruised or broken ribs...to keep them stationary etc.

Breathe easy...

AVB

Heady profile image
Heady in reply to abirke

Thankfully S is going into respite on Saturday, so as long as he can hold off any serious infection, they will be able to cope!

Thanks for making me smile! As much as I am horrified that other hospitals around the world are exactly the same, it is comforting to know, I am not completely mad and this actually does happen else where!

Lots of love

Heady

abirke profile image
abirke in reply to Heady

Do you know that neither B's urologist nor the accompanying nurse ever checked to see if B's catheter and subsequent appendage was in harms way, aka infected? After all the war stories of how bad permanent caths are, the doc never once came near Bruce and asked him how he felt .....made sure the thing both things were healthy@

This little imp is just a consultant with his little laptop and blond cutsie nurse!...Again I get it he can't risk cross infecting by touching everyone.....But you know Bruce just sat there and asked why are we here....I don't think it was dementia as much as it was not sure what the doctor wanted from him..."youre not gonna check me what am I doing here!"

I wish I could reassure you in the ways of the medical field, but no matter how sophisticated we've become the first and only remedy is still the same ,

Take two aspirin and call me in the morning...Better yet call my nurse ...she'll get back with you

AVB

Jafarrar profile image
Jafarrar in reply to abirke

So true

jzygirl profile image
jzygirl

I am glad in one way that Brian is not in a position now to floor hug. But he now seems to know without being told when a bank holiday is coming up....... so lets gets an infection of some sort. Chest infection this bank holiday weekend. I blame the sausages.

Why do they treat us as if we are nurotic idiots. Do they not realise that we really don't want the hassle of attending A&E or lets face it any dept in the hospital. Such hard work getting them ready and the stress of getting them there is beyond any normal persons knowledge and capabilities. We only do it if there is no other choice.

I am so glad that the carers that we have at the moment are not the sort that follow the health and safty code to the letter. Notsure on the new lot that are taking over from our regular girls. I am so sad that our morning carer that has been comeing in 12 mornings out of 14 is leaving at the end of the month. We have had her for the last 18 months so it will be like losing a family member. And our main evening carer did her last shift tonight. So its all change again.

Janexx

Heady profile image
Heady in reply to jzygirl

The really sad thing is, a doctor was trying to be helpful, use a bit of common sense, be a bit pro-active. OK, they did what they were told to do, but why the attitude? Again, if they had bothered to ask a few questions, about S's health, they would have realised!

I hope you have managed to get the antibiotics that Brian needs. It is uncanny how these things always happen at the most inconvenient time.

That sucks about your Carers. Another wonderful day in the life on PSP!!!

Lots of love

Heady

loppylugs5 profile image
loppylugs5

Oh Heady so sorry,And wish I could help,Maybe one day when I get through this Chemo I can offer practical help.Even if I just wash and iron!Care agency tried to charge for the week after Des died so it is not an end to the struggle yet.Tourettes still very bad but a young friend tells me I was always good at swearing TRUE.Does he have pain spasms Des had an injection by an out of hours doctor who then left me a bottle of Oramorph to see him through the worst he had cracked ribs.Trouble is when we meet hostility we tend understandably to be hostile to the next person and it escalates.Hope you have some sleep tonight love,Pauline x

Noella21 profile image
Noella21

OH HEADY ! HOW AWFUL! Here it is about the same. If you are old and have something degenerative they wash their hands off you. You are on your own. If you are in a care facility they drug you to eyeballs so they will not have to deal with you. I know I sound jaded and maybe I am. Doctors do not like patients that they can not fix. We have been through so much of this. We have not gone the catheter route yet and am avoiding it Like the plague. So far we use attends super obsorbent briefs. I also use a super absorbant night pad in them during the day. If I toilet Ron every 3 hours he is often dry or I may have to change just the pad. At night I use two pads one in front and one in back. This works well. Never had a urinary track infection or skin breakdown. Do have to wash the sheets and mattress pad several times a week. But from all have had read it is a small price to pay. I try to avoid the doctors as much as possible. I may be a bad person for doing this but you have to work with what you have got. This is not text I know and brings us over the 3 pad a day limit. I am happy to pay the extra pads if it keeps us from the clinics and hospital emergency. I hope S feels better soon.

MaiSalah profile image
MaiSalah in reply to Noella21

Hi Noella. I agree with you about using the pads to avoid doctors and hospitals.. i also use external condom catheter.. it helps me a little.. i change it every 2 days unless my dad decide to take it off every night saying that he didnt do that so we have to wash his clothes and sheets daily...

Doglinton profile image
Doglinton

Sorry to read this Heady. Exhausts me just reading it. I felt happy that we don't have carers as Chris had a similar fall yesterday and I just managed but when I got to the pain bit that's so worrying. How sad to hear of your hospital experience. Its really depressing.

Hope S's pain stops.

love, Jean x

NannaB profile image
NannaB

Oh Heady, something you can do without, aggravation from professionals.

Sending you a great big hug.

X

Tokki profile image
Tokki

Lost for words, except a few expletives, at your treatment. Some healthcare people are brilliant and some, well .....

Hope things get a bit better.

Debbieann profile image
Debbieann

Bring in the feathers, in need to do some spitting too!

The wheelchair service rang yesterday, they don't provide attendant controlled wheelchairs, so that's that bit of hope out the window, I thought they would provide wheelchairs as the illness progressed, stupid me to think we might get some help with coping with this PSP

Then we went to they eye clinic in the afternoon to see an ophthalmologist (so I thought) waited where we was told, oh you should be in the other waiting room, waited there, oh you should be in the other waiting room, we can't do anything for you, you need a neurologist, I said I thought we were here for prism glasses, doc said prisms won't help, we'll just check the health of his eyes. There's a bit of a wait, there's 6 in front of you now, I am now on 'the edge' well if we'd waited there in the first there wouldn't be 6 in front of us, we might as well go home if if there's nothing you can do, they did supposedly put F to the front of the queue. We saw a doc who said you need a neurologist, she can refer you to an ophthalmologist, somebody who deals with eye movement, he needs prisms fitted, I said I thought that's what we're here for, no we don't have one here! One visits once a month, very vague about whether we'd get an appointment, reiterated we need a neurologist, it was the neurologist who'd made the referral in the first place, I am now at my wits end as what to do!

We have our first appointment today with an 'incontinence specialist' we only got the forms Wednesday late afternoon, so I have not completed the pee/poo chart, for the last 3 days, that will help them accurately diagnose the problem. The last 3 days have not been very typical anyway, he' was to worried about having too much fluid yesterday because of the hospital! If yesterday was anything to go by I'm not expecting any help/advice today!

Heady please share you feathers!

I do hope S has not done any serious damage, the trouble with bruising it usually gets worse before it gets better, so I guess he'll be pretty sore. I do hope today is a bit better for you, and you get you much needed respite

Sending you a hug and💐 I couldn't find feathers!

Debbie xx

vlh4444 profile image
vlh4444 in reply to Debbieann

Debbie, we have an attendant controlled wheelchair provided by the wheelchair service. It was a struggle to get it and D originally had to prove that he could steer it himself using the front controller, but they did let us have it. Recently they have been threatening to take it away as D can't steer it himself any more but it is my only way of getting him out and about and we bought a WAV specially for this chair. So far we have still got it and can still go to visit daughter for tea or a NT garden etc. D getting less keen to go out though so if they do take it away it won't be quite so bad now. The whole thing is silly though as this chair is specially set up for D with back support and air cushion and he uses the tilt and recline facility several times a day so all that would have to be replicated in a manual chair if they insist on us having one instead.

It might be worth you having another go at getting an attendant controlled power chair. Tell them you can't take him out without one and that it is affecting his independence.

We also had a similar experience to yours at the eye clinic a couple of years ago. We just got passed round lots of different eye specialists because they didn't know how to treat the problems. In the end Specsavers were much better and more helpful and sympathetic than any of the 'specialists'. Couldn't fault their customer care and D came out with new glasses with prisms which he has been wearing ever since.

Sorry you've been treated so badly Heady. Enjoy your Devon trip.

Vicki x

Debbieann profile image
Debbieann in reply to vlh4444

Thank you, wheelchair service are going to arrange an appointment at heir centre, so we'll see what the outcome is. F does usually go to spec savers, but last time he went they said they couldn't help, but I guess it would be worth a phone call!,

Debbie x

vlh4444 profile image
vlh4444 in reply to Debbieann

Where is your wheelchair service centre? Don't stand any nonsense - like everything else fight for what you want!

goldcap profile image
goldcap in reply to Debbieann

Debbie, there are actually neurological opthamologists, that's who he needs to see. Ours was responsible for the backup definitive diagnosis of PSP as that's usually the " tell". If you are in an urban area there should be one. Good luck!

Cuttercat profile image
Cuttercat

Boy do I know how this is. Even for me - when I get a sinus infection they won't do an x-ray anymore to find out. This is ludicrous.

And to make sick people and their loved ones feel badly is awful.

It's not healthCARE it's insurance. And that's what Charles, my husband the nurse says!

Love,

Cuttercat

ketchupman profile image
ketchupman

Bless your heart Heady. While I miss my Kim greatly and would give everything I own to have her back for one more day, I sure don't miss all the emergency runs and fooling with the medical profession, even here in the US.

Tons of love,

Ketchupman

Heady profile image
Heady in reply to ketchupman

Oh Dan, thank you! I can't cope with this constant fighting, yet feel guilty, because I know I have too. The thought that you have just given me, that come the dreaded day, this will be one blessing, gives me the strength to carry on, until the next fight! I know he is worth it, but why does it have to come down to this?

Big ((((((hugs)))))))

Lots of love

Heady

goldcap profile image
goldcap

Ok, now I get the difference. You , my dear UK friends are a constant source of envy to those of us in the states with your resources and help. But if your experience was a common one then we are blessed over here. When my husband falls they go to worst case scenario mode especially if he has chest pain or has fallen (even in the general vicinity of his head )and do an EKG , X-Ray, scans ( cat for head otherwise MRI), ultrasound and urine test for ladder issues. Sometime I don't want to go because I know they will do everything imaginable before they will let us leave and usually admit him to the hospital or keep him overnight for observation. The way you were treated was unprofessional and discriminatory. I would file a complaint. When F first began going in ( to hospital) for scary looking bloody gashes , all bruised up, they called in social workers to question him. Luckily at the time he could still speak and could tell them what happened. Later on, when they got to know us ( and I educated them on PSP they stopped thinking it was abuse thank God! We would get the same response you did however, if we called paramedics just to pick him up off the floor. I say "just " knowing full well how hard it is do get them back up but that would've the paramedics response. Hope you receive better attention to care in the future.

Hugs, Jayne

jillannf6 profile image
jillannf6

how is s now h?

l jill

xxxx

jillannf6 profile image
jillannf6

;poor you d s hedy

lol jill

xxxx

Nanny857 profile image
Nanny857

Dear Heady, another nightmare to add to the list. I hope S is okay and no infection and you are enjoying your respite now.

Lots of love,

Nanny857 xx

Jafarrar profile image
Jafarrar

Heady,that was just awful how could they treat you like that. So sorry you had such a bad day.

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