PSP Association
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George

Well another night with not being able to sleep, George chest sounds awful, he is coughing, but asleep, sounds horrible, don’t want him to suffer like this. New career is here, she doesn’t listen, keep telling her not to change routine, but does she listen NO. Then tonight at bedtime she takes George to the toilet, does not put the brakes on the wheelchair, tries to get him on the rota stand wheelchair moves and he is hanging out the wheelchair, nearly on the floor, why oh why did she not put the brakes on? She said it won’t happen again, feeling so stressed. I asked her to ask the double ups that come in, and her to be careful of the radiator in the wet room, that has be damaged from the wheelchair, her answer was, she was more concerned about the person in the wheelchair than the radiator or the door frames. Ah so frustrating. She sits on her phone on the sofa doing on line shopping, she was in her bedroom when George was in the sitting room folding up her clothes. I feel like I am looking after her and George. If there are cups on the side she just leaves them. Sorry I am moaning, I don’t expect her to do much, but am I being over the top in expecting her to help a bit in the house? We are all living here. Anna who was here before was amazing. So stressed, sorry about moaning but feel I can tell you all, our children say mum tell her, but how many times can you tell a person the same things. Sorry for moaning, I am so tired. Yvonne xxxx

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Can you ask for another carer to come? I feel you are entirely within your right to ask for someone else if the current one is not meeting your criteria.

Ron

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Yes I am thinking about it , so stressful x

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I am sorry. Unfortunately professional caregivers are not as caring than us. I can see how you loose sleep with her. Please feel free to vent any time.

My kids are trying to get me to get part time caregiver, but based on my past experience, it was more effort than relief

Hoping that you fine that one in a million cargiver.

Bobby

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Bobby we had a one in a million, but she has moved on, I think part of it is I miss her, she had become part of our family. Just think that some careers think they have it to good, and take liberties. Xxx

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You have a right to complain! I forget - is she from an agency with a supervisor? Can you talk to them about your expectations and how she isn't meeting them? The longer she gets away with it, the more she'll think she's in the right...?? Sorry Yvonne, if my comments are native - I've only just started with carers...

A hug for tonight - hope it goes better XX

Anne G.

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Anne going to sort it out soon, feel I have been very patient they are slowly disappearing xxxxx

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This carers behaviour is totally unacceptable ... she is being paid to care not do online shopping. I have to say you have more patience with her than I would and She must know much stress you are under. Your Rant and rave is perfectly understandable and I feel for you. Feel it is right for you to contact her supervisor and let her know what a strain is being put on you with her actions. Love and hugs to you. Jxx

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Yes I think she bows I a.m. loosing it big time, she is from a care agency, I will be contacting them pretty soon xxxx

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Hi you may very well be pining for the carer that you had a good relationship with but before we retired our employees would be in serious trouble if they were found to be on their mobile phones chatting or browsing during working hours. That is not what they are being paid to do and in our line of work -working at heights- it would have been dangerous not to be vigilant and also it is dangerous to be distracted by phones when driving and caring for patients. She should not be doing it end of. As for not respecting the fabric of the building of your home, that is unacceptable also. Of course accidents happen and of course the patient comes first but the two things can be done at the same time, would she bang and crash and damage things in her own home? If not, why would she do so in yours. I would change my WiFi password and speak to her or the agency, she is your employee not your friend. It is easy to forget this in a home situation and boundaries become blurred but sitting online shopping whilst you do what she is being paid to do shouldn’t be happening - would you pay a cleaner to do this whilst you do the cleaning for her? Time to be polite but assertive. Good luck Ruth x

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So true Ruth going to go into the office tomorrow, can’t be stressed like this xxx feel that George is also stressed xxxx

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Hope that they can sort it out and get you the help you need. Thinking of you, no one needs unavoidable extra stress at times like this. All the best take care x

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Yvonne do something now. When I was there a couple of days ago she was not watching George only got off her backside once to move him up the chair and never put her phone down. The trouble is you have been spoilt with Anna who is beautiful inside and out and so good at her job. Xx

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Pauline I know that Anna is a treasure love her with all my heart, George has a special place for Anna In his heart xxxxx

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Get rid of her Yvonne today!

And if you can’t tell her I’m happy too!

How the f*** can she actually call herself a carer?!!!

I’m so truly sorry for George and I’m so truly sorry for you darling!

Whilst your at it you need to lodge a complaint to the agency (I know you haven’t got the energy) but if you don’t, she will continue that disgraceful behaviour with others and that my darling isn’t right!

I could literally punch her for you and I’m not violent!

Hugest hugs

You don’t need this s**t honey

Love you sooo much x 💕

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Thank you have an appointment with them tomorrow xxxxx

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Dear Yvonne, its a good idea to get her changed asap as I think you can tell pretty quickly if it's going to work. She will only get more difficult as time goes on as it sounds as if her hearts not in the job. Sending you lots of love and support lovely lady, the last thing you need is extra stress and another person to look after. Fingers crossed you will get things sorted with a more compassionate carer soon.

Love Kate xxx

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I think she likes George a lot, but she wants to change things, which makes me very unhappy, while I was out she did her washing never bothered to look if there was any of our in the basket, she had her break, came back sorted out her dinner, she didn’t want to eat with us, like others do, I give her 35 pounds per week for her food, then double up came in, she carried on with preparing her dinner and left me to double up, double up asked her to help her. Doctor came in tonight george unwell, she was asking him if george could have a allergic reaction to food, doctor said no, I felt like kicking her out the room. Yvonne xxxxx

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I bet you did feel like giving a kick up the #######, what a liberty she is taking. What I don't understand is why do they want yo do this sort of job if they aren't willing to fit in, listen, learn, and help you both as a unit after all it isn't just for George it's for both of you. You must feel very uncomfortable in your own home, it's just not on Yvonne.

Hope the situation is resolved sooner rather than later.

Big hugs

Kate xxx

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Thank you Katie needed the hug, been into the meeting, they are going to call her in on Monday see how it goes if nothing gets better she’s out. Xxxxx how are you both doing? Xxxx

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At least it's being dealt with Yvonne, does she know about the meeting? As for Ben, he has deteriorated considerably over the last couple of weeks, now he has to be hoisted, speech indecipherable and so quiet, he tries so hard to communicate but I just can't understand him, I think this is the worst part of this disease. The Parkinson's Nurse and Physio both indicated that we are on the final push but that could be weeks or months. It is so pitiful to see him like this as his brain is still very 'with it' he is so thin now and his food consumption is declining. All I can do is to help him to be as comfortable as possible and feel loved.

Love Kate xxx

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Oh Kate isn’t it so sad, this bloody illness is the pits, not sure she hasn’t said anything to me, I am taking George to the hospital to see Proffesor Morris, told her I did not need her to come with me, she wanted to, so she could stick her nose in, our Son works in recruitment at the care company it will definitely be sorted, I have put up with enough. Sending you a big hug and one for Chris. George has gone down hill in the last few months, always looks so sad xxxxx

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Sorry I meant Ben xxxx

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A few choice words are needed, like ( if you use it wash it up when you finished ) or ( your mother doesn't work here , clean up after your self ). (Damage and breakages. Must be paid for )....Brenda

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Brenda she does my brain in, DN came in she transferred George and didn’t put the brakes on again, I did it xxxxx

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Hello Yvonne, I am on respite break at present, feeling very relaxed but I read your posts with interest because my husband seems to be in a similar stage to George. He too coughs all night. I've lost track of the damage done in my house by careless Carer's who don't treat it as they would their own home. I know it's difficult but some don't care less. They don't wipe their feet , not even in snow weather, I had a cream carpet, I'm not houseproud , guests keep shoes on but all wipe their feet. I've had chunks taken out of new doors, skirting board scrapped to bare wood and chunks out. Bathroom tiles chipped, wet coats flung on my new sofas, it's endless. While I've been away my daughter has ripped bedroom carpet up and vinyl has been laid, cause they repeatedly drop the catheter bag, or don't put the commode pot under commode chair when moving him. I've only been in this bungalow 3 years , had to do loads of work when we moved in, it's nearly ready for a revamp again !!! That's my rant over. We have two Carer's morning and evening but I'm struggling with day time toilet hoisting , it's almost impossible. I hurt my back 2 weeks ago and it's just about ok now , I'm wondering how long for. We are due a chc funding check soon , I'm hoping we still get it and extra help will be given me. Do you have a day carer also ???? It's all a hugh worry isn't it.

All the best GW xx

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Hope the meeting goes well and they allocate a new staff member to you. This one needs to go & quick.

It astounds me how some people call themselves carers when clearly they do not give a toss. They enter people's homes and have no respect whatsoever.

Give the agency a list of your house rules and ask what their own rules are.

Like GW our home has been trashed and no one seems to give a damn. I do think to myself one day if you end up needing this level of support you might realise what it is like to have people trample through your home and have no consideration for decor. I'm pretty sure they wouldn't do it in their own homes. If I can manage to move equipment about with no issues why can't they.

Finding decent care is so blooming hard. I'm rather stressed myself currently as got a personal assistant really messing me about and I could do without it. Being a direct employer is not good for stress levels.

Let us know how you get on with the agency.

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Oh dear hope you sort out your stress level you don’t need it either. Hopefully the meeting will go well. She even interfered when the doctor came in xxxxx

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That really gets my goat, no respect what so ever and crossing boundaries there when not been asked to.

Keeping all crossed the next one has more about them.

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Hopefully xxxx

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How did it go with meeting?

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Told them my concerns, they listened and agreed with me, they are going to have her in the office on Monday, if she doesn’t listen she is out, tonight I told her George only needs to sit on the toilet for 10 minuets max. Out of the toilet washed teeth cleaned and bed, she was to put him to bed and leave him, not stay in there messing about. It was a very sad evening our old career was here and George said to her please don’t leave, I don’t like the new career, and tell Yvonne I love her xxxxx

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Oh gosh bless him. It is so hard when a good person leaves. I can't remember if you get CHC or not.

Did she listen to you tonight?

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We get CHC yes she listened to me tonight I have had enough. George is looking so sad, breaks my heart, I cooked his dinner and she said I can feed George, I said no thank you I want to do it for him. Granddaughters came around late afternoon got a small smile out of him. Grandson coming tomorrow to read to George he nearly seven, going to bring a book about naughty children, Charlie is very excited, told him I would pay him, I asked him how much it would cost and he said £1.50 a day. Bless him keeps me going xxxxx

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:(

Go for it... PSP is hard enough without carer nonsense.

The roller coaster. Ugh.

You know what you are doing so I will just say

Hugs

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Thank you Kevin I wished people would realise we have lived in this nightmare for nearly 4 years xxxx

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Hi Yvonne, sorry to be late on parade, but agree with everyone. Report and ditch her ASAP. life is far to hard to be patient!

Lots of love

Anne

Ps before you ask, we are exhausted, but for the right reasons!

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Got a meeting today so hopefully will get sorted xxxxx so happy you are having a lovely time xxxxx

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Hi Yvonne!!

Cut the Gordian knot!

The difference between a professional caregiver and one that meets the minimum is huge in these cases. In any case, it will never be perfect and you will have to compromise on something.

Luck and hug.

Luis

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Yes I know!!!!! Xxx

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Dear Yvonne,

It`s bad enough having carers in your home without them behaving like that. I echo what everyone else has said - ditch this uncaring carer. There are better ones out there but, as we all know, they can be few and far between ! Having to deal with issues like this when you are at your lowest is really unfair. Love to you both.

xx

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Feeling very stressed with all this, not fair at all. Yvonne xxxxx

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Dear Yvonne sorry to hear of your terrible nightmare. You and George definitely do not need this distressing behaviour from a so called carer. I hope your meeting goes well and if you don't want her about the place tell them to replace her, no it's or buts, you need someone who will do the job properly and take some of the stress off you and George needs to be comfortable with them too.

Sending you a big hug, just wish I could give you a real one. Lots of love Nanny857xx

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Oh thank you hopefully next one will be better, she has been coming to cover breaks for the last 9 months, she annoyed me last time, I should not of had her back this time. Will sort it once and for all. Hugs back to you xxxxx

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Hi Yvonne, do you ever wonder it’s always something sorry George is having such a hard time, so stressful, my brother has been coughing also not really bad but it’s been going on for about six weeks now. As far as your caregiver I would not stand for that at all, you should be able to get another one to replace her, does she get paid, do what’s in your ❤️. Nettie

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Well yes she gets paid , hopefully at the meeting she will be told to pull her socks up or she will be out, to stressful all of this. Yvonne xxx Sorry to hear about your brother coughing I think that is a horrible part of this illness xxxxx

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Hi, Yvonne, Sorry but I have only just got this post - computer playing games !!!

So sorry you are having this trouble. I realise its particularly hard as you had a good carer and now have a very casual one. I didn't have anyone living in and I know I would have hated it. Its hard having to deal with a tricky situation when you are so low mentally and physically. Thank god for your family support ! I love the idea of his grandson reading to him - wish I'd thought of that !

I found it hardest of all when I was unable to work out what Chris was saying. He always looked at me as his " life-belt " and it felt I was letting him down if I couldn't work it out.

I hate PSP so much.

Big hug, Yvonne. Lots of love, Jean xxx

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Hi Jean George had his first story yesterday, he seemed to enjoy it. I know what you mean, feeling so sad, George is really unwell with this horrible coughing and his chest bubbling, we are of to the hospital tomorrow, not taking her with me our old career is free and she offered to come with us. Sending you a big hug Jean xxxx Yvonne xxxx

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Aw Honey, it's so sad. We are in the same boat.

Love,

Cuttercat

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Cuttercat I think you are right, went to the hospital today they said he had progressed, the doctor was lovely completed us on how good we had looked after George, felt good a doctor saying that to me. Sending you a big hug. Yvonne xxxx

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Hi Yvonne, I've been away a few days so just catching up with the forum. I'm so sorry that you and George are having to go through that with the carer. It's just so frustrating, partly because they don't do it the way you would like, but also the lack of attention sometimes.

I understand the carers comments about not worrying about chipping the skirting, more worrying about George in the chair. Frustrating for you, but I do understand that, my house has lumps and chips out of all the door frames upstairs where David was wheeled about, but I have always taken the view that the house is just a shell that needed to do whatever we needed it to do at the time. I can always repair the door frames, when I feel like it. I really don't care that they got chipped, just that David got his shower, or his transfer downstairs.

But everything else I am 100 % with you. I sometimes took over from the careers if I didn't like what they were doing. We shouldn't have to, but we can't see our loved ones not looked after the way that we would. Carers have horrible procedures to follow, which I was always fighting against, but if I had caught a carer on the phone like that, I'd have punched them in the face!

Keep fighting on, it is so worth it in the end.

Massive hugs!

Derek

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Thank you Derek I suppose you are right about the door frames. Hope you had a lovely break, yes care company had a chat to her today, she couldn’t do enough for me when I got home with George xxxx

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That's great news, hopefully the start of a new fruitful partnership 👍

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