Husband showing rather rapid deterioration over past month, never see GP as not been a need and there is no treatment as such. Choking episodes are a little increased as is coughing, he is sleeping day and night and difficult to manage and grasp instructions. Wanting to rule out chest infection , never having called a GP out I rang for a home visit. I explained it is difficult to determine natural progression of the illness psp and infection and I would appreciate a visit. Doctors reply . Monitor temperature, plenty to drink and he should improve . No need for a visit, can you get him to surgery?. No I said, I can barely get him to a bed or a chair, he is immobile, can't grasp instructions, impossible. Well she said, it's probably a virus, if no improvement ring again, good day. I'm ..........flabagasted and speechless. This is the surgery that sent a letter saying it was time to test his memory again as last test was 2 years ago. Well if I didn't know it before, I know it now, I'm on my own with this ! That's my vent over.Bless you all.
The best yet. !!: Husband showing rather... - PSP Association
The best yet. !!
WOW!!! Does the doctor have any history with your husband? Does he have a heart?
Seems like when you think you have gone over one hurdle, you are met with another. Sounds like they are playing pass the buck here. I cannot chime in on chest infection, haven't reached that yet, hopefully someone with more experience can help. I would keep on calling unitl someone with a heart and brain (sounds like the Wizard of OZ) helps you out.
Hugs
Paola
Oh my. I often wonder why the medical profession seems to attract so many people who don't give a damn for their fellow human beings.
That's shocking but doesn't surprise me, there are very few professionals who have even heard of PSP let alone know anything about it! Keep on at them, these people have to understand the problems involved and you shouldn't be trying to do everything on your own!
Good luck...
Love and hugs....Pat xx
Keep calling them !
Dear gypsywoman
Simply not acceptable!! Call them back abs demand a home visit!! Tell them to come out today, latest tomorrow or you will have no choice but to report them!!
What an absolute bloody cheek! Don't accept their nonsense!! Ring them back!
Some of these so called professionals should NOT be in the medical profession!!
Please let us know what happens
Hugs x
Do you know, I haven't got the strength to fight about it. He had letter giving him opportunity to have memory test a few weeks ago. They get paid extra to do those tests. My daughter is hopping and has gone home to pen a letter . OT called today, hospital bed and hoist being delivered tomorrow, I told her , she's ringing hospice . No wonder health service in a mess. I have never called a doctor out in my life, we have rarely been to the surgery, not even since diagnosis. You would think this alone would flag up that I must have a concern. Xxxx
I understand but if we don't fight they get away with this nonsense, however I do get you, sometimes it's just too bloody tiring! X
That's what they want you to do by giving up, please don't, there is help out there but you have to fight, fight, fight, this awful situation has made me a much stronger woman and I refuse to give in! You will get there in the end, trust me....xx
Awful treatment....I only wish I was surprised! My mums gp has referred her to a hospice for day care....without having seen her for the last 3 years!! How can that be?!?! Sad for you xxx
Isn't it all just unbelievable, referred to hospice, no check on current condition. I despair.Dont know what I would do with out this site and the supporting folk, it's where I learn most about psp. We are all in it together, but I want to weep at the lack of help out there. Xx
you're not alone at all in the weeping....I'm right there with you xxx
So sorry for you. In the US, there is a lot of administrative nonsense to go through each step. I know it is frustrating. If you are really worried, call an ambulance. Then he gets seen.
What a joke, ring back and speak to the doctor, tell them to read up about PSP and ring you back, it is to easy for them to give instructions over the phone, they did that to me, I rang them back and went mad, told them how can you say what is wrong without seeing him, for god sake, they are terminally ill, they did visit within the hour, sick of some doctors xxxxx
I ask doctors directly " do you know about PSP? " If they say no then I teach them, if they say yes I say then you will know about whatever I am concerned about.
But I know that when I feel tired and upset it becomes more difficult.
love, Jean xx
Steve had three unnecessary visits into hospital, because of lazy GP's. The last one, two weeks ago, been left in a cold corridor, under a load of windows open, for over six hours. His temperature was 38 degrees, when he left home, but the time the hospital look it, it was boardering on 35. One way of getting a quick drop. I suppose, hospital bills, don't effect their budgets. Next time I would go through to the emergency line, say you think he is dying, one quick description of his breathing will be enough to frighten them into a visit.
The doctors really do deserve all the criticism they are getting. I know DN's use to be my public enemy No. 1. In fairness, in that last week, they kept us going, didn't mind at all the my daughter took charge. Saw one out of hours GP, with her fancy Christmas jumper and spotty socks, she said the end was nigh, but no coming back to check on him or us over the next 4 1/2 days.
Take care
Lots of love
Heady
Shocking treatment of the terminally ill. Hope you are doing ok under the circumstances.xx
I am not surprised but still it apalls me. This is criminal. I took my husband in for a check up and a prescription refill. It was quite tight in the office could not close the door. I was told not to bother brining him again I can just come in and get the refill. I am hoping the intention was to spare us the difficulty of transporting him. I suspect since both of us have conditions that are terminal it makes doctors feel inadequate because there is nothing that can be done to change this. We still need support and measures to make us as comfortable as possible. I think Doc may not approve of me trying to care for hubby at home. They make regular rounds in nursing homes I have been told. Thank goodness we have each other on this site. Since our time is so limited we want to spend what time we have left together. What is so hard to understand about this? I am so sorry that you are having this trouble too. I know that doctors have so many patients it seems like like triage us and we are on the no hope for recovery list.
Hi, gypsywoman, how are things today? Thinking about you, ec
Hello, that's nice of you......well, hubby sleeping all day and in bed by 5pm and sleeping all night. So I'm not sure what is going on, whether it's another stage of the illness or what. Rang hospice and they seemed to think as long as drinking and weeing plenty , go with the flow for the present. There is no temperature at moment , so it's an unknown waiting game. I'm sure not ringing the Doctor again. She could be right ..might be a virus but a bit of support would not go amiss. All the best
Still no nurse or doctor or anyone?!?! X
No , but I rang hospice, they advised and will ring me tomorrow, I think they saw it as progression to be expected , but they were good to speak to.
Scary to deal with on your own though?! Hang in there X
Yes you are right I keep checking all night.!!!! Fortunately my daughter is not far away and is a duty manager in a Mcarthy and Stone residence, so although not a nurse she's clued up on things. She'll be here in morning and will soon call a doctor with a piece of her mind. Xx
Go girl!
Hope you have a peaceful night & get some rest X
Unbelievable - except having read other people's experiences on this site not unbelievable . Perhaps you should move to Silverton - our Doctor phones every two weeks to ask how we are doing and if there is anything we need him to do . On top of that the Dr who first treated V but who has now left the practice to go to another one ,lives locally and drops in every so often just for a chat and to see how V is .Doesn't give medical advice but she just sits and holds V hand and looks terribly sympathetic .I guess we are really lucky .
Georgepa
Wow, Georgepa, more than lucky, that's how Doctors used to work 50 years ago, when we were all known by name and not just a number. Xx
Don't take no for an answer, simply not acceptable. Do they even read the patient notes?. You have to fight your corner. I know it's not fair bit that is the only way to get the care that is needed.
Praise where praise is due.
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