Sometimes I wonder ......: This week the... - PSP Association

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Sometimes I wonder ......

Georgepa profile image
37 Replies

This week the psychiatrist who is treating Veronica for her anxiety and depression said she was going to call on us rather than us go to her office . She made an appointment for 2 o'clock on Tuesday and duly arrived at 1 o'clock right in the middle of lunch .She settled herself in our kitchen much to my alarm as the chair she chose ( with arms ) was rather narrower than her good-self if you get my drift .I had visions of her leaving our house with said chair still firmly wedged on to her posterior . I sometimes wonder if psychiatrists are quite all there . She told Veronica that she was looking so much better , this was after a night when Veronica had surpassed herself and been up 18 times in the night . Then when Veronica tried to explain ( which she finds difficult ) that life was not good she said be positive and look at all the things you can do not the things you can't .

When someone is loosing almost each day one of their faculties this becomes an almost impossible task . When you can no longer walk without falling over , remember what day of the week it is . can't read a book or concentrate on anything for more than about 5 minutes , don't want to see people ,can't eat or drink without choking - someone telling you to think positively is just plain bonkers Likewise her suggestion that I get in audio books for V to listen to . This I did but then soon realised that if you have more than a couple of characters with a bit of a plot then if concentration is an issue you just get hopelessly lost very quickly unlike with television where you do have a bit of a visual prompt .Even the shortest of stories becomes meaningless. As a psychiatrist specialising in care of the elderly and dementia I thought she might have worked that one out .

Confidence in her now at rather a low ebb ( she is relatively new to us as they change psychiatrist at the clinic on almost a six monthly basis ) I smiled sweetly at her , encouraged her to finish her cup of tea and eyed my antique chair with some trepidation and thanked her profusely for coming which thank God she took as hint (which it was ) to leave .Veronica who had put on her brave face whilst she was there promptly burst into to tears . I think if she calls again I will say I have got some contagious disease - really can't be doing with it -- nor my poor chair either .

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Georgepa profile image
Georgepa
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37 Replies

Well that is just horrible! What is wrong with that woman? Psychiatrist or idiot? That is totally ridiculous. I believe I would have to have a conversation with the good doctor alone. Not my business, but I think she needs to know your reaction to her words... and the effect her words had on dear Veronica.

You can do it in a calm way without an accusatory attitude and get your point across. If nothing else, she will not show up again. Or if she does, perhaps she will have a new, enlightened outlook on the whole situation....and life.

I am so sorry you both had to endure that. Totally unfair.

Take care, Georgepa.

Jeannie

abirke profile image
abirke

Well i am sorry for all the trouble the visit caused , especially the tears....

The last professional who made home based visits taught us more the art of bee keeping than he did keeping my B. upright....the professional also tried availing himself to an armed chair (actually Bs walker) where his girth was greater than the span of the seat....he finally sat on the couch.....twas abit funny (tho I tried not to giggle)

B does like books on tape. But if we were basing the popularity of said books by the quantity from which to choose we would find that Bruce is in the minority! Obviously not as many people like Morgan Freeman reading to them as one might have thought! I hope the next visit is easier on V, you , and most certainly your antique chair!

AVB

goldcap profile image
goldcap in reply to abirke

And here I was jealous of you all having doctors that made house calls!

Maybe she showed up early hoping to get fed. Did I say that-my bad!

I try to look for the good in any situation. At the least to learn something.

But I have yet to find the good in this horrible disease. And about all I have learned is how little the medical community knows about it. I am sorry you had to endure her PollyAnna bullcrap. We all strive to be our loved one's advocates and voice of reason along with being a caretaker. And sometimes things seem pretty bleak. Better to keep the feelings outfront where they can be dealt with rather than covered over with a blanket of false optimism. You were there today to comfort and do damage control. As for the J-lo shrink, look on the "positive side". She will be rotated out of your lives fairly quickly.

And every time something god awful happens you can imitate her and have a good laugh between you two!

Now your chair however....

Best, JGC

vlh4444 profile image
vlh4444

So sorry you had to endure that Georgepa. I agree that it is completely infuriating when people say 'you look better', or 'hasn't the walking/talking/eating improved' when you know so well that nothing has, or is going to, get better/improve.

We have had several of these sort of visits from professionals who sweep in and sweep out again and observe or assess D for 5 or 10 minutes when he is trying very hard and doing his best to concentrate. After they have gone he is completely wiped out and often very emotional.

I should think a nice walk (push) along the canal or the estuary with you would be much more effective therapy for Veronica than a visit from the psychiatrist!

Vicki x

Joeglad profile image
Joeglad

A psychiatrist saying the equivalent of 'pull yourself together' is totally unacceptable. I know she didn't use those words but they mean the same.

She seems to cause stress not relieve it and not only to the chair!

Not sure you need that sort of help.

Doglinton profile image
Doglinton

What an incompetent psychiatrist !!

Poor Veronica. Its awful to feel someone who should know better thinks you should pull yourself together. Basic !!

So sorry for your chair too. I can imagine it holding its breath as her rear descended !!

At least its a sunny but windy day here.

Love, Jean x

NannaB profile image
NannaB

I think the reason we don't have many such callers is that I can't listen to folk talking nonsense without responding. My thoughts are, how will they improve if they are not told how riduiculous their statements are. I'm usually quite diplomatic but did respond with,"Rubbish" once. You are obviously a much nicer person than me. I think being a line manager to classroom assistants, observing them in classrooms and then giving feedback and being an NVQ assessor, also doing regular observations, I always seem to be in an observation mode.

The description of the woman with a chair stuck to her reminded me of an observation I was doing in a primary school. The only chairs available were the tiny little wooden ones apart from one that was slightly bigger but with arms. I chose that one as my back doesn't like low chairs. All OK until I got up and the chair came with me. The 5 year olds thought it was very funny, so did the woman I was assessing. I wondered how I could keep my dignity but decided not to bother so did a little bowed down walk with a wiggle or two and then asked two of the bigger boys to help the TA release me. Fortunately the little ones didn't have mobile phones. If something like that happened at the school I worked at, I would be on Utube for ever.

Have a good weekend, may be a bit windy for a walk along the promenade.

X

Katiebow profile image
Katiebow in reply to NannaB

I'll hold that picture in my head to cheer me up on one of these horrible grey winter days. Xx

Georgepa profile image
Georgepa in reply to NannaB

Many moons ago before I was an antique dealer ,I was a lecturer in a college of FE. One of the courses I taught on was for trainee social workers . I arranged a visit from a very senior psychologist from the local health authority , to impart some words of wisdom . I carefully set out a chair in front of a semicircle of chairs so it would be slightly informal . When he arrived he immediately removed the chair as far back as he could go away from the students . Then he took out a pristine pocket handkerchief and proceeded to dust the seat of the chair. He then meticulously placed the handkerchief square on the seat and sat on it . I found it very hard not to catch the eye of any of my students and keep a straight face . When he finished , he very carefully folded his handkerchief ,returned it to his top pocket and left .I imagine he must have heard the outburst of laughter as he walked away down the corridor as the students were beside themselves . A group discussion followed on anal retention .

Yvonneandgeorge profile image
Yvonneandgeorge

George sorry to hear about your experience with the lovely lady, she sounds like a nightmare, I think these people should come and stay with you for a few days, and let them judge after that, what is the matter with people, can't they just open there eyes and see what these ill people are going through. Sending you a big hug George for being so patient, and a big hug for V, just can't believe professional person would behave like that.

George not well yesterday phoned up doctors at 5.30, doctor rang back asked me a few questions, then asked me what do you want us to do, I kept my cool, did not want to be rude, I said to her you tell me, she said she would speak to someone and get back to me, which she did, she said ring 111, so you are not coming out you want me to ring 111, she said yes, what a joke.

Rang 111, doctor took 4 hours to come, George not passing urine, he said he has to go to hospital, he could not test urine, but said leave him until 1-2 in the morning, if he passes urine we will come back and check it,if not he has to go to hospital, district nurse text me to ask how George was, it was the district nurse that said his catheter must be blocked, phoned out of ours district nurse, she came in and the catheter was blocked change it, checked his urine he has an infection, ring back 111 give all information once again, doctor rang back going to leave a prescription at the chemist.

So tired, George is exhausted, careers came in, I asked them to let him sleep. Feel like I am walking on air. Love to you all, especially you George, I think you are marvellous. Yvonne xxxxxx

Amilazy profile image
Amilazy in reply to Yvonneandgeorge

Hi Yvonne, hope George not to badly affected by the experience. It does give you a lesson though: call District Nurse first, most are level headed and look for a solution rather than fob offs.

Had similar problem but with M's PEG tube bleeding round the wound, GP (not our usual one) only suggestion was to arrange an emergency hospital appointment to remove the tube. Luckily the DN called before we went did the thing the Dr did not do, look at the site, she cancelled hospital contacted GP for hydrocortisone cream to treat overgranulation a common issue with wounds. Calmed M and me even put kettle on, explained DN's see and deal with PEG's, catheters and drains daily so know what to do. Since then only contact the GP for bimonthly check or if DN suggest we should.

Hope you can get some sleep or at least feet up for a while. Best wishes to you both Tim

NannaB profile image
NannaB in reply to Amilazy

Bi monthly check.....what does that mean? We never saw our GP for 18 months. To be fair, he does attend multi disciplinary meetings with the Hospice, OT, etc. but only contacts us if I request a visit from him.

x

Amilazy profile image
Amilazy in reply to NannaB

NannaB I found it so difficult to get appointments that we agreed with the practice that the GP would contact us about every couple of months, usually does a house call to check us out you know routine blood pressure temp etc checks M progress, think it because she has interest in neurological conditions.

Do not have the multi discipline meetings though they sound useful will check out with DN.

Best wishes Tim

Amilazy profile image
Amilazy

Sorry George, hope V is not too bad today.

Margaret was offered psychotherapy a year in to PSP (2 yr ago) she told the GP and psychologist where to go in terms I did not think she was aware of (GP and I put it down to behavioural change caused by PSP to an astonished upset young lady). So no silly visits for us.

I can imagine the look of horror on your face at a straining chair; a beautiful picture. Hope Veronica able to see the funny side.

Best wishes to you both hope you are sheltered from the gales today.

Tim

Yvonneandgeorge profile image
Yvonneandgeorge in reply to Amilazy

Thank you Tim, George is ok, he was bad yesterday asking for his mum, we have started the antibiotics, so hopefully they will kick in soon. I agree with you with the district nurse, she is so lovely, better than the doctor, always there to support us. George was watching strictly come dancing, and he said when I am better, we can go for dancing lessons, how sad is that. Xxxxxxxx

Katiebow profile image
Katiebow

Your post sounds like a script from a comedy programme except that it isn't funny and is deeply affecting the lives of two lovely people who need support and understanding. It amazes me that some of these professionals don't understand our needs and concerns when we most need them to. Another blood boiling scenario that just should not happen. I'm surprised you didn't yank that chair sharply from her backside and then, with an air of surprise, apologies and tell her that you underestimated the size of her derrière. See how she likes it being patronised.

Kate x

jillannf6 profile image
jillannf6 in reply to Katiebow

I AGTREE WITH YOU KATIE BOW

LOLJILL

HGUS AND XXX OT U ALL

Georgepa profile image
Georgepa in reply to Katiebow

I guess you just have to let it roll off your back - if I got really angry with all the idiotic things people have said I would probably have cardiac arrest myself .Seeing the funny side keeps me sane ------I think???

jzygirl profile image
jzygirl

Oh George why are these people in the jobs that they do. I sometimes think that they really don't understand the situation or is it they are so jaded that they don't care.

We had a strange thing said by a neuro physio about 6 months ago. She said she couldn't understand why Brian's arm was so stiff with lack of movement in it. She was a bit surprised when i said well try a psp symptom. His leg is not as bad but is stiff and getting stiffer. She then said her other psp patient didn't show that symptom so she will contact the neurologist and ask him about it. So after that Brian was under the impression that he was not long for this world. Janexx

Heady profile image
Heady

What is it about having PSP, that turns so called professionals into bumbling idiots!!! I know it's rare and that they haven't come across it before, but I'm sure this isn't the first rare desease that they would have come up against. What ever happened to research? Or even, a quick look on Google? (Even S's Carer looked PSP up on the computer, before she started with us!!! ) Let's be honest, even that's not very good, it just talks about the main symptoms, which only the swallowing and lack of communication problems, do we ever discuss. Most of OUR concerns never register on any site!!! I suppose, it's such a weird illness, it's difficult to put into words. We can all talk about a symptom, but nobody really understands how different it is for PSP sufferers! How full on it is, 24/7, that there is no respite.

George, I am so sorry, this must have been dreadful! But like the others have said, keep that view of the backside, in your precious chair, try to get V to picture that, it might help repair a small part of the damage she has caused!!!!

Sending big hug to you both!

Lots of love

Heady

jillannf6 profile image
jillannf6 in reply to Heady

i agree with u heady

u are all amazing; i am good i have to eb altho mhy partner doesn't think so

lol jill

:-)

shasha profile image
shasha

OMG HOW AWFUL IS THIS - DEAR GEORGE PA, I WONDER HOW YOU KEPT FROM TELLING HER HER FORTUNE !!!

Georgepa profile image
Georgepa in reply to shasha

Well I have to admit I passed the time wondering what she would look like stark naked on my chair - slightly perverted but highly entertaining - certainly not politically correct !!!

cabbagecottage profile image
cabbagecottage

couldn't we all teach them a thing or two if we put all our heads together after the experience we are having .

quickjel profile image
quickjel

Hello Georgepa, so sorry to learn of the distress caused to you both. I guess the best that can be said of the episode is - I’m sure she meant well!! The proverb “the road to hell is paved with good intentions” springs to mind.

The little I know about the psychiatric profession suggests to me that their choice of vocation is an indication of ‘their’ needs rather than the rest of us, along the lines of “birds of a feather etc.”. I’m sure there are many who would take issue with me, but we are talking of a profession who, in my lifetime, were complicit in locking women in mental institutions for nothing more heinous than having a baby without being married. One hopes they’ve improved - but it was from a very low starting point.

I’m sure you will by now have comforted your wife and recovered some of the sense of humour so essential to deal with these well intentioned but ill informed visits.

Having just re-read your post it occurs to me your chair wasn’t tight enough, a little tighter might have prevent her from talking out of her nether regions.

Kind regards, Jerry

easterncedar profile image
easterncedar in reply to quickjel

It's true! Not all, of course, but I have known several people who have gone into psychology or psychiatry because they have emotional or mental deficiencies. They are looking to find that clue....

shasha profile image
shasha in reply to quickjel

ha ha jerry, you are so right about the profession - they do say that the psyiatrista are madder than their patients !!

Georgepa profile image
Georgepa

I mustn't be too cruel about her Jerry - she did put my wife on mirtazipan which has calmed down her OCD tendencies a bit and she did take the trouble to follow it up- it was just rather a bizarre afternoon and yes they are not really clued up on PSP .

easterncedar profile image
easterncedar in reply to Georgepa

I had to reread this post just now because it's 4 in the morning here, we have been up 6 times with 5 changes of clothes and I am wrecked, but I thought, George was up 18 times one night, so we are not close to the record, even if we are closing in on our personal best. It's oddly comforting to know that other folks are dealing with this...sorry though I am that any of us has to...love, ec

Georgepa profile image
Georgepa

I reckon once you have been up 5 times then it doesn't make much difference whether its 5 or 18 - you are smashed for the next day whatever - hope you can get some rest .

love Georgpa

easterncedar profile image
easterncedar in reply to Georgepa

Thanks, Georgepa. I'm up again, but he's mostly sleeping tonight. I think now I'm too tired to sleep! And tomorrow the workweek begins...later today, that is. Ach, HE doesn't whine; what right have I?

Georgepa profile image
Georgepa in reply to easterncedar

Every right in the world . Of course we wouldn't swap places with our partners but with the illness comes a lack of will to want to do much - but we still have a world to explore and the ability to do it but our lives are cut down and it is difficult to have one's world so reduced when one would like to live life to the full . You shouldn't have to feel tired because you have been up looking after your partner in the night - you should only feel tired if you have walked 10 miles ,been out enjoying yourself - having fun .So you have every right to bemoan your lot- we all have .

Love Georgepa

easterncedar profile image
easterncedar in reply to Georgepa

A little sympathy goes a long way. Thanks, George. Love, ec

Doglinton profile image
Doglinton in reply to Georgepa

I agree, George. We can feel empathy for our loved ones and sadness for ourselves at the same time.

C said to me yesterday that he would go in a Home and leave me free to travel but I want him with me. I also pointed out that I am getting older and wouldn't now be able to do things. [We were watching the gorillas in Uganda ! I couldn't trek through the rainforests now anyway !]

Stay with the memories.

If he was well there is still plenty we could do though.

Love, Jean

Escada29 profile image
Escada29

I agree these people who come round are of absolutely no good what so ever its very frustrating isnt it!!!

sammy90210 profile image
sammy90210

Sorry to hear about the silly psychiatrist - but you can be a good writer sir :)

My dad has PSP too and I've noticed his sense of humor is heightened - I play him YouTube videos of Norman Wisdom or Jerry Lewis or Lucille Ball - he loves their silly jokes and laughs out loud at every joke - I would recommend something like that

Georgepa profile image
Georgepa

Thanks for that Sammy

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