Struggle and stress

[gypsywoman1947]

You will ALL know about this !! Some stress cannot be removed obviously , but some is totally unnecessary.

Been struggling to get a doctor from surgery to visit, my husband has not seen a GP in 4 years, Zopiclone kept being denied on repeat prescription, without this my husband calls all night to get up and "go to work" and so on. Other med for gastric reflux sued for one month , can't have that again ...there can be side effects. Finally after 3 months of this battle I wrote a letter of complaint to surgery at lack of care ,compassion and understanding of our situation . That brought a response. Had a letter.....had a GP visit. The outcome is its agreed as he is on palliative care side effects are not an issue if the patients situation can be eased, and there will be no restrictions. Secondly they think I had better be looked at too in a caring and compassionate way, is how it was described, and sent someone to house to do blood tests for everything imaginable and an ecg test for heart. My point is.....why add to my stress.

Then there is today's health and safety issues !! Last night carers reported hoist is noisy, this morning carers arrived instructed by their office to care for him in the bed, no hoist to be used. Bed was soiled and wet and so I operated hoist and got him out of bed while they sat in the lounge. Once he was in shower chair they did the caring. Then I did the hoisting for dressing and into recliner.

Next stress ring hoist repair , who passed me from pillar to post , back and forth until 6 calls later I hit the jackpot and an engineer will be despatched to look at it. He has just left , it is to be replaced this evening.

Why is every thing a battle. Thank goodness for this facility to vent my rage. Love to all you fellow stressors and strugglers, I know I'm not alone.

GW x

[doglington]

Thank god that when there is a terrorist attack the emergency services don't sit and wait for " safety issues " to be solved !

I find I get enraged by these things. Sometimes when I come off the phone I just want to lie down. Can't , of course !!!

Hope the GP situation is now solved. You've done well.

Love, Jean x

[Helen119]

I hear you and will stress and struggle along with you.

Love and hugs

Helen xx

[Satt2015]

Your definitely not alone gypsywoman! For some unbeknown reason nothing seems to be easy within the world of Psp! And everyone that is supposed to help i.e. 'So called professionals' are, half of the time incompetent and useless! They make us all want to scream! Unfortunately I do rather hope one day 'the professionals' that have caused us all so much stress have to encounter some of the same!! Not very nice of me I know, but that's how they make me feel!! Sending you strength to get through x

[humphers in reply to Satt2015]

Know how you feel but couldn't wish psp on anyone.........it's the level of ignorance ("it's Parkinsons".........er no) within the medical profs that really gets me.........best wishes x

[gypsywoman1947]

That made me smile, quite true and how I often feel. They have no idea, I think it's because the illness is not known to most and they don't bother to try and find out anything either. The unpredictable situations are just unbelievable. It's total mental anguish and full time nursing. Xx

[Escada29]

I am in a state of dread at all times. Thinking of bailing out and going to live under the pier xx

[doglington in reply to Escada29]

Lets all get scooters, like George !!

Escape - - -

xx

[vidvv]

Sorry am unaware of how it happens in your country.

If carers are brought in for a bed-care, they do not hoist if the need is so? Not even assist you? That must be certainly adding to the stress.

The place I live in - there are no such healthcare systems so we are on our own. Keeping the obvious issues unanswered, its sometimes better if you know you have to handle everything and do not have help.

Hang in there and take care of yourself.

[gypsywoman1947 in reply to vidvv]

Health and safety rules dictate if there's something wrong with equipment they must not use it or help me to use it. As I don't come under their rules, I'm in my own house I take full responsibility for using it. Don't know what happened to good old common sense. It's been exchanged now so hopefully all will be good. Xx

[doglington in reply to gypsywoman1947]

What would happen if you said " I'm not using it either " Would they have just left him? What if you had just gone ! Would they have left him ? They need shaking up.

Of course they know we will step in.

xx

[gypsywoman1947 in reply to doglington]

They were told to bed care him and leave him in bed. ,It's the health and safety rules !! Ridiculous

[vidvv in reply to gypsywoman1947]

missing the "grinding teeth" emoji like in other social media sites.

[abirke in reply to vidvv]

India sounds alot like America....I did all of the work though at the first part of diagnosis B was given physical therapy which helped somewhat. It wasn't until hospice a few months before he died that we received daily help

AVB

[vidvv in reply to abirke]

There is no help AVB. we are on our own to decide whats best for our loved ones. Doctors can be engaged medically but nothing from a care-standpoint

[abirke in reply to vidvv]

I am so sorry.....vidvv, well remember, you are not alone when you are here with us....

[Yvonneandgeorge]

Sorry to hear you have been so stressed, glad you have got everything sorted with the doctors, why do people add to our stressful life, nothing is easy. George is on Zopiclone, do t have a problem getting them, sounds like your doctors surgery is useless. Sending you a big hug. Yvonne xxxx

[gypsywoman1947 in reply to Yvonneandgeorge]

Agreed......xxxx

[abirke]

Poor GW! It is a battle because nobody sees it except you....Unless we are naked in the middle of the street, no one sees us!

I must say that I am quite impressed by your tenacity!

You got things done girl....as hard as it was you were successful....I guess the only words of encouragement if indeed I can call it that, is that you are your husbands greatest advocate!

So get naked and get out in the middle of that street! hahahahahah

AVB

[gypsywoman1947 in reply to abirke]

Love it but don't think so. Xx

[abirke in reply to gypsywoman1947]

HAHAHAHAHA

[Jafarrar]

Sorry for for your troubles. I pray things get easyer love ❤️ jenny

[Tippyleaf]

Hope today is a better day or at least you have a functioning hoist. PSP is such a ........ cannot think of a polite word this morning!!

Takecare sending love and hugs

Xxxxx

[humphers in reply to Tippyleaf]

Psp is F*****g S**t x

[Katiebow]

That is an absolute disgrace in every way GW, how can one surgery OK drugs and do home visits and others avoid it at all costs. Our surgery seem pretty good but haven't had to ask for a visit yet and Ben not on that drug so can't really compare. As for the hoist situation, why can the system be able to fast track vital equipment so that your carers or lack of carers doesn't become an issue. Bet you wanted to scream from the rooftops, utterly utterly disgraceful, no wonder you wanted a rant.

Love and hugs Kate xx

[Spiralsparkle]

Oh I can so relate to all you have written. I constantly feel like I'm banging my head against a brick wall and no one able to do their jobs correctly or give a damn either. Definitely no help in alleviating stress levels. Our GP surgery is being closed end of this month and I have no idea where we will go next, these have been a good surgery after an initial battle for home visits and that Mum cannot talk on the phone so discussion have to go via me.

Just found out the amazing neuro physio who is the one person who has understood CBD is leaving. I've had to cancel last appointment as Mum been unwell for over a week with a stomach bug.....it feels like the universe is constantly against us and not working to relieve the suffering Mum has.

Big hugs

[gypsywoman1947 in reply to Spiralsparkle]

I know how you feel, I get the surgery won't speak to me about ny husband, I went marching down with power of attorney paper , my husband thinks his catheter is there for the bowels, and wouldn't know what tablets he takes for what !!' Should have put him on the phone really.....except he can't hold it ! Xx

[Spiralsparkle in reply to gypsywoman1947]

Yeah it is so frustrating and not good for our own physical and mental health. Hope they are more helpful now going forwards.

X

[gypsywoman1947]

Thank you all for replying., much appreciated, today's a new day !!!!' Love to all affected by this wretched illness xx

[Julieandrog]

My mantra , rog i cope with but the system except for the hospice always let you down.

X

[Jafarrar]

It is a fight to get anything done. God Bless 😘