A Frustrated Carer!

I sent my wife to a respite centre for a week. She had previously attended this centre and "enjoyed" it, and I had a measure of confidence in its standards. Sadly, a carer trained in manual handling of the disabled was transferring her from the wheelchair to a recliner and my wife FELL. She banged her head on the floor and her side on a coffee table. Later X-rays ruled out cracked ribs, but my wife was extremely shaken and her poor movements are now more severe. She has noticeably worse balance problems (not just lack of confidence). This we know is a typical response in PSP.

I have kept her from falling since 26 October 2012! Now someone in a respite centre has mismanaged a transfer with a consequent fall. They had full written details of her PSP condition and my own extensive education about the symptoms and high falls risk. All to no avail. Am I being too harsh on them, after all, her geriatrician told me that I cannot immunise her against falls (in such places). Well, I cannot really accept this type of incident among those who are specifically trained to move disabled patients. Clearly, if they had assessed my wife correctly, they should have used two carers for all transfers. Sadly, nursing homes and respite centres admit they cannot guarantee prevention of falls. This may be acceptable if the patient is trying to mobilise on their own, but I am not sure if it's really acceptable when a carer is present and they are supposed to understand the nature of the patient's movement problem. Perhaps the problem in Australia is that aged care workers can enter this area without qualifications, and are taught "on the job". Most employers insist on some qualifications but the courses/qualifications can be achieved in 6 weeks or latest 6 months. They pay them sub standard wages and the turnover rate is very high. I'll come off my soapbox now.

I doubt if they will produce a formal report on this incident, but I'll investigate further. (When I worked in a large teaching hospital, we always had to produce an incident report for similar occurrences).

I suppose I'm angry, frustrated and disappointed.

(It doesn't help when I'm dealing with some personal health issues. I just want to stay healthy enough to outlive my wife and take care of her in our home "until the end", if that is at all possible).

Cheers

T.

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  • Dear Strelly, awful to hear. Back here in ENgland, the only time I used to leave the house was when the carer gave my wife a shower. Well one carer misassessed risk, and she fell agains t the shower chair. Much as you said confidence and mobility dropped, and she eventually went into hospital for 6 days. We now have a better agency and 2 carers to help with movement, and again its the only time I will leave my wife except for when she is at the hospice. On a recent hospital stay for pneumonia, the staff ignored all the warnings re PSP and my wife was allowed to get up and wander by herself to the toilet, well after about 5m all went worng, the other patients were calling for nurses, and there was mess all over the floor. On another ocassion a nurse told therese she could have a shower, the nurse misassessed mobility and therese fell in the shower and caught hold of the nurse to stop the fall. The nurse didnt report it, but again confidence and mental health problems went all wrong. I have asked the REHAB people to produce a note so that if therese went into hospital the staff get some information on PSP. The junior doctor on the ward had never heard of PSP. I guess others have similar stories. And yes with me, she has never fallen, I have stopped the falls.

  • hi strelly/ tony

    i am so sorry about your wife falling when in respite care

    i have decided on a good nursing home 4 myself when the time comes but i am unsure of who they will deal with me

    i have been going to the local hospice a san outpatient 1 day a week and they are so good at dealing with people with v limited mobility -always 2 staff and equipment to lift them or hoist them from wheelchair to toilet or recliner

    or to an ordinary chair.

    so it is difficult to make such a decision and you r v brave to have done that even though out has net worked out a tall well 4 you or your wife

    lol Jill

    hug s and xxx to you and your wife

  • Dear Jillann, I'm so impressed by the way you seem to be coping with your psp. How did you come to be so practical? You've found a nursing home for yourself? What do you do when you are at the hospice? We deal in denial, my sweetheart and I, so decisions that cannot be made by me are left unmade, and he would be beyond upset if I mentioned hospice at this point. He was a biologist, but just doesn't want to terms with what psp means. On the bright side, he is starting a physical therapy program next week, and the hope for improvement keeps our spirits up. Best to you, and thanks for the inspiration! Easterncedar

  • hi easterncedar

    ihaved oenlots at the hospicev- allhelpfu lthignsforme

    sucha s

    1 massage and relaxation

    2 exercises

    3 the hospice is not a plac elf doom and gloom at all and is v positive as are ally he staff/ v volunteers / patients etc

    so try and talk your other hALF into going there if there si one local to you

    4 i made soemcards for folksliekmu partnerand m y dad

    5 i made a photo album f or my dad fo his life and gave it to him to look at b4 he died in september

    6ALL THING S WHICH WERE GOOD FOR EM TO DO

    AND I GOT A GREAT FREE LUNCH THER EA SWELL

    LOL JILL

    HGUS AND XXX RTO YOU AND YR P ARTNER

  • Hi Strelley, I'm so sorry this has happened. I can understand your feelings as my husband fell 6 times in two weeks when I had to put him in a care home last year because I hurt my back. 5 times were when he got up himself but once was whilst being transferred with the help of nursing staff. Reports were written and posted on the computer so I could access them from home. I was so worried after the second fall, I walked to the home every day ( I couldn't get into a car) and spent a lot of time with him. He had pressure alarm pads on his seat and under the mat but staff didn't get to him in time when he stood up. I had explained the symptoms of PSP and left an internet printout in his room.

    He did deteriorate during his stay but improved to how he was before he went away after about a week of being home.

    I hope you stay healthy enough to look after your wife until the end; I think this is probably a concern most of us carers have.

    I did reply to your post earlier but it seems to have disappeared so I apologise if you get this twice.

    Take care of yourself Strelley and I hope your wife "bucks up" a bit like my husband did.

    Nanna B

  • SO SOORY to hear this. I do hope you are getting proper help at home. One of the ambulence men said to me, do your back in son and your both in the hospital.

  • Very true what the ambulance men said. I'm very conscious of how I move, bend,lift etc but the last time my back " went" I did it sneezing. Another time I was spitting toothpaste into the sink. The problem started 20 years ago when I slipped a disk whilst attending a"patient" at a mock incident set up for my first aid exam. I ended up being carried down 3 flights of stairs by ambulance men, passing others waiting for their assessment. I was in too much pain to notice but the ambulance men said their faces were a picture ( of fear). The certificate was placed on my stomach as I was lifted into the ambulance....I'd passed!

    I do hope your wife hasn't deteriorated further after the speed at which things were going.

    Best wishes to you both.

    Nanna B

  • HI NANA B

    SORRY ABOUT HYORU BACK - MY PARTNER HAS THE SAME PROBLEM WHEN I AM ON MYH KNEES AFATER FALLLGIN AND ASK HIM TO HELP ME UP1

    BUT HE IS GETTIGN BETTER AT CARING 4 ME WHEN WE R AWYAY BUT NOT HWNE WE ARE AT HOME

    ;;P]LOL JILL

    :-)

  • Hi Jill, I'm ok at the moment. I have something called a Mangor Elk, loaned to me by social services to help me get C up when he falls. It's like a small air bed. Provided I can get him sitting on it, I then plug in 4 tubes, press the button and hey presto, we have lift off. It takes him up to a high sitting position and he is then able to stand from there. It has saved lots of 999 call outs and made it easier for me to get him up. Twice I haven't managed as he wouldn't bend at the waist to get into a sitting position and fortunately he doesn't fall much now as I have a camera on him 24 hours a day except when in the wet room/toilet so can get to him before he falls.

    It maybe worth asking SS if you could borrow an Elk if falling is a problem for your partner. I think I am probably more attentive when we are away from familiar surroundings. I know the sort of problems that occure at home but tend to be more on edge when we are away ( supposed to be relaxing, hey ho!)

    You take care and stay off those knees.

    Nanna B x. ( haven't worked out how to include a smiley yet .)

  • A SMILEY SI DOEN BY

    1 USING THE CAPS KEY FOR A ;

    THEN LOWER CASE FOR A -

    TJEM UPPER CAS EFOR A )

    AND HEY PRESTO THEY WORK

    LOL` JILL

    AND A :-)

  • A SMILEY SI DOEN BY

    1 USING THE CAPS KEY FOR A ;

    THEN LOWER CASE FOR A -

    TJEM UPPER CAS EFOR A )

    AND HEY PRESTO THEY WORK

    LOL` JILL

    AND A :-)

  • Hi Strelly

    sad to hear that,I am with you if we don't fight for our loved ones no one will.Your always so informative.I hope for both your sakes you get well soon. Take care x

  • Hi Strelley

    It's really awful that this happened to your wife. A similar thing happened to a friend that I help care for. He too fell and the nurses were very sheepish when they told us because his poor mobility was clearly explained in all his notes. Another time, he fell on the floor and gave himself a head cut because he had been desperate for the toilet and the nurses came and went because they couldn't understand what he was trying to say, so he attempted it himself. His mobility is bad now so he couldn't do that now. The nursing home itself has a good reputation and of course the nurses were very apologetic, but it's still not good enough by any means. So since this has all happened I have decided to make a sign to put beside his bed/above his bed with blue tack, when he goes in again next month, that says "please be aware that due to the nature of my illness, my balance is so bad that I cannot move anywhere myself without full assistance at all times, otherwise I will fall over. Thank you for your help". It might sound a bit ridiculous having a sign, but it will remind the nurses when they go in to help him and if it helps keep my friend safer then we will try it. I hope your wife recover from the trauma of what happened to her.

  • I amso sorry to hear about your wife's mishandling, you take so much care yourself,no doubt on your own, only to have to face this. My husband and I both fell when transferring him from chair to wheelchair with the result I was issued with a standing frame with which I could lift my husband and transfer him safely, and also save my back from further damage.As you rightly say the consequences of a fall worsen the symptoms of PSP. and you least expect it in a nursing home.

    I prayed that I would stay healthy to look after my husband and that he would not end up in bed for months, and both my prayers were answered, we managed to get him up, dressed and downstairs, with the aid of a Stairlift, until three days before he died, I hope you manage to achieve the same. My thoughts and prayers are with you both.

  • I read your note a couple of times. Your a hero to have managed so well up to the end. Back here they say my wife will be too weak for a standing hoist, so we dont know what will happen next when the little standing ability she has is lost.

  • Dear Jmbb, the frame my husband used required no strength on his part, I placed a strap around him, he put his hands on the bars and I pressed a button which lifted him from the chair, it was not easy to move the frame as it was heavy with him on it, but if on tiles or non carpeted floor it was ok, the alternative was to removethe chair from under him and replace it with the wheel chair or commode, I couldn't have looked after him without it, the stairlift, the commode and the bath lift, were our lifelines.and with a little help I managed to ensure he had a daily bath. Best wishes to you I will keep you in my thoughts and prayers.

  • m

    Y husband couldn't use a standing frame so we went immediately to a ceiling hoist <its. Itixed to the ceiling . I am two months off78 and manage it well . I wouldn't do so without . I use it on my own

  • TO EASTERN CEDAR

    HI HOW R U TODAY?I AM GOO DBUT STILL FALLING OVER FAR TOO MANY TIMES A DAY - BETT ER WHEN I A,M OUT OF THE HOUSE AND AWAY;N AND MIY PARTNER RESPONDS BETTER TOO HWEN I AM OUT AND AWAY

    I WENT TO LOOOK AT A NURSING HOME V NEA R TO WHERE WE LIVE NOW AND ALTHO EXPENSIVE IT SEESM AGOOD PLAC ET O EE

    AT THE HOSPICE WHE R E I AHV AEBEEN GOING FOR 12 WEEK S 1 DA Y ] PER WEEK I GET A MASSAGE. WE DO SOEM EXERCISES OR SOME CREATIVE WORIK ( IV E DONE A PPHOTO ALBUAM FOR MHY DAD AGED 92 FROKM THE 1S TPHOTO I HAVE OF HIM AGED 10N UNTIL HIS 90TH BIRTHDAY 2 YEAR S AGO'; WE HAV E AGOOD LUNCH THEH RELAXATION THE PM SO IT HAS BEEN OOOD FOR ME (APARA= FROM SEeing the chaplain twic e and it has brought up many old things which i thought i hAD dealt with

    but was not he case

    lol Jill

    :-)

  • Massage and exercise sound pretty appealing. I think he'd like that. I wish we had something like that around here! The photo album is a wonderful thing to put together, a real treasure for your father. You've given me an idea for my guy. He's got so many photographs to go through. I bet his kids would like some! Lots of love, Easterncedar

  • hi\

    no probs ]if he could sort out the photos that would be good for him too

    dont forge thte next online party is on 3rd AUGUST SUNDAY if you can make it that is

    lol Jill

    :-)

  • I'll try to attend. Thanks, Jill. I'm having shoulder surgery on July 30th, and a party should be just the thing to cheer me up!

  • Hi Easterncedar, sorry to hear you have to go for surgery. Don't forget, YOU will need rest afterwards! Please, please take your time of this. We all need our shoulders, they do quite a bit of work, especially when you are a carer! You won't do your loved one any good if you rush the recovery.

    So take care, hope it goes well.

    Lots go love

    Heady

  • Thanks, Heady. You are so right about needing our shoulders. I luckily have a couple of dear sisters who have offered to come and stay for a while to help. I will lean on them! Love, Easterncedar

  • HOW DREADFUL FOR YOU AND YOUR DEAR WIFE - YOU LOOK AFTER HER SO WELL THAT IT MUST MAKE YOU FURIOUS WHEN SHE GOES SOMEWHERE SHE SHOULD BE SAFE AND ENDS UP WITH MORE PROBLEMS THAN SHE WENT IN WITH - I THINK THAT THE IDEA OF PUTTING A NOTICE UP IS NOT A BAD IDEA AT ALL !#

    MY LLOVE TO YOU BOTH AND CONGRATULATIONS ON KEEPING HER SO WELL FOR SO LONG ...

  • Dear Strelley,

    So sorry to hear your news, but from my experience, I have to say 'welcome to the real practical world in the domain of care homes'!

    My advice is to warn you to be very careful how you deal with this complaint. Of course, you are correct in your analysis of the whole incident but it can get a whole lot worse. I have tried all that you have done, the explanation of the disease, the visits, the extra care needed for PSP patients but it makes not the slightest bit of difference and if you make too big a fuss the staff and management become offended and become 'set' against you. Notes left stuck by the bedside also do not work, nobody bothers to read them and they think they know best anyway.

    So what if they write a report and document the details? It is virtually meaningless; what is does mean is that the head nurse is off the ward and pen pushing whilst the rest of the carers work on unsupervised. Some of the carers may be agency workers and frankly have minimal interest in individual patients as they probably will never work there again or not for a very long time.

    So my advice is, unless you are a medical doctor or consultant or have some real influence in the 'care world' and with the' powers that be,' tread very carefully.

    Take a deep breath, shed some tears, count to twenty and gird your loins for the rough journey ahead; continue to take great care of your wife and cultivate acceptance on what you cannot control.

    Sorry for the 'miserable' advice but I could not solve the problem at all!

    My father and I went through 'hell' and now, six months after his death I am preparing a case for compensation. Yes, I may be wasting my time, but if I could use it to bring PSP awareness into the public and medics notice, that would be a major achievement.

    Am I brave and strong enough to do it, I am not sure yet.

    Best wishes,A

  • Hello Strelly,

    So sorry to learn that, even after your best endeavours, your wife had a disabling fall.

    Your description of the care home staffing arrangements in your location are, if press reports are to be believed, similar to those for much of the UK. Poorly trained, poorly paid, inadequately supervised and too few in numbers seems to be the norm. Our local nonresidential hospice was completely different, in addition to paid professional staff there was a large proportion of volunteers; people who actually wanted to be there to help and not obliged to be there to earn a pittance due to their lack of ability to work elsewhere. It’s a sad reflection on our ‘civilised society’.

    Whoops!! now I’m on the soapbox you so recently vacated!!!!!!

    I hope your health is soon back on track, caring is a demanding activity even when feeling fully fit. I hope you get a satisfactory resolution to your enquiries but whilst it is none of my business I hope you don’t expend too much energy trying to resolve a problem that is largely insoluble (without running your own care/nursing home).

    In conclusion I would like to thank you for all your posts, they are I’m sure a tremendous help for those trying to find comfort and informed comment on a subject about which so little is known.

    Very best wishes to you both, Jerry.

  • Dear Strelley - I'm so sorry to hear of your troubles, and hope that both you and your wife are recovering. Falling is a traumatic experience in itself, it's no surprise folks lose ground as they do. You've always been so generous in sharing your knowledge with us, taking such good care of this community - I wish there were something I could offer in return, other than all my gratitude and concern, which I do send. Easterncedar

  • Dear Strelley

    I am so sad to hear that your wife has had these falls and truly feel your pain. I can understand where you are coming from too in the non-recognition of PSP. I can well remember when my husband had to go into hospital long before PSP took it's grip on him , I was very careful in explaining to the hospital staff all about PSP and it's consequences and left the appropriate literature. It was all to no avail, he's was labelled as "aggressive" simply because he could not communicate his needs to them. But I found out about this when the caring sharing district nurses attended, two handed, with this on his notes!

    I am not sure if I agree with Nader in not taking it up with the home on case you "incur the managers wrath", why should inconsiderate or even misguided treatment go unchallenged?

    Incidentally I have had a weeks respite holiday and my husband had a live-in carer plus the carers we already use so that he had 24/7 care. It worked very well, my son was on hand to give extra relief as well. The only downside now is that the branch of the social services that make payment for this is disputing the costs, despite being told what it was going to be and agreed beforehand. Heigh-ho, life's a you know what and then you die, as someone said once.

    Take care Shelley

    Kind regards

    Dorothy t

  • Hi Strelley,

    If your Health & Safety legislation is anything like ours at the very least they will have to write an incident report detailing what happened. Hopefully they will be willing to share that with you. Whether said report leads to any changes is a whole different ball game though!

    I do hope your wife recovers from the fall and that your health problems improve too.

    All the best

    h

  • Join the club strelley.

    My husband went into a very expensive respite abode and was allowed to fall.Just makes you so mad doesn't it and all the apologies in the world don't make it right

    Joey

  • Strelley...I, like you, hope to last to Madeline,s end,I am almost sure your wife,s fall was even more painful to you than it was for her,it,s like someone hurting your child...one day we all will be in a place free of PSP and our loved one will be herself again....best wishes,Rollie

  • Dear Strelley/Tony I am really feeling for u & understand your anger + frustration. Yes the staff so far I have experienced are v shortly trained in days I believe! One of my pc (for shower) is a former trained nurse & excellent - she lost her rego as did not work for over 2 years while her babes were cared by her @ home - she's gem pity u cant get her my care is thru S Cross. But she tells me they are all the same its the state of the health system over all that is in a mess. That doesn't help u but I really hope u get things going better for u + your wife Mary

  • I awoke to a new day and read all these wonderful posts. I was overwhelmed by so many responses. I really, really appreciate you all taking the time to share your experiences with me. I will "take on board" your suggestions and advice. Thank you for your encouragement because you have certainly lifted my spirits.

    It is another day, and I write this with my dear wife opposite me in her recliner, eyes closed (as usual) and still showing some effects of her fall. Nevertheless, she is home (and hopefully safe) and loved and deserves the best care I and my family can give.

    For those who were concerned about the care services I have in the home, I have expended a lot of effort with the care provider, and now I am quite happy with the services and help they provide. I do not know what the future holds when we move into the hospice/palliative care stage, but we do have assurances from our neurologist that he will be involved in this process.

    All the best to you who have travelled this awful and challenging road and to those who are still on it (both carers and sufferers)

    T.

  • Oh Strelley, I do feel for you.

    Not only an Australian problem unfortunately.

    If you mention the incident to the neurologist, at least it is then on record somewhere, and could be taken up later?

    If your wife were to go to the same place again, hopefully they would not be so careless twice - but of course it would depend on whether your wife had her confidence back.

    Thinking of you,

    Mo

  • Bonjour Tony...stay on that soapbox of yours till your justified anger abates.I can imagine how you feel especially as you have been ever so careful about saving your wife from the inevitable PSP falls. Very frustrating for someone as careful as yourself....but a fall happened to my bride on the first day that the newly hired highly diplomad home help was on duty...she couldn't raise her back up and went to get a neighbours help.

    Since I had complete confidence in the gal 's ability to cope I'd gone out shopping...and when I got back Jo told me what had happened! Luckily no damage was done...but what a quick lesson it proved to be .It never happened again!

    Tony I think the basic problem is that the medical profession does not know how to deal with PSP patients. Don't forget there isn't another disease where the patient has falls,right? So they don't expect it to happen,

    In the interim I agree you have every right to feel angry,frustrated and disappointed...let down by the persons least likely to have let you down. Hopefully they've learned a lesson out of what happened.

    But Tony, you've heard me say it before and I'll repeat it again for ALL carers to hear. No-one can take better care of our loved ones than YOU can!

    But so sorry it had to happen to you.

    With you in mind....and all carers everywhere...

    brian

  • i no how you feel when you try to tell them its psp they dont no my husband was in hospital i kept exolaining he had psp told them not to give him solids but blended food they gave him a piece of toast which caused him to asperate

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