Caregiver to PSP patient

Hi all :)

I have been a caregiver to a PSP person for 4 years and just seeing if I can learn anything new or offer my advice on my experience as a caregiver for PSP

40 Replies

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  • hi is th epatient arelative or are you a paid caregiver

    the difference does not matter really but it woudl be helful qto know

    lol JIll

    :-)

  • Hi Jillann. I am a paid caregiver.....

  • I think it is brilliant that as a paid caregiver you care enough to join us here! The more people that understand how pwPSP or CBD tick the better it will be for others in years to come.

    Dianne

  • Dear Kandi,

    Are there services in your community that have been of assistance - for you? or the person you are caregiving for? Are they working to your satisfaction? A little background would assist in knowing what stage your life and the person with PSP is at.

    I find by getting a little information of where people are at and how they handling their situation.... Helps me better understand and appreciate...........

    N.B. We all have our great, good and 'not so good' moments....

    Thanks

    Sharon AB

    From Australia

  • Hi Sharon, I am a paid caregiver for an 80 year old for the past 4 years. When I first started he was able to walk and talk but now he can know longer do these things . He has 24 hour care and is confined to his bed . He is a sweetheart and has never lost his smile or laugh. He is now on a feeding tube and we need to suction him through out the day. He is very aware of what is going on around him and can squeeze your hand for yes and no questions , We have no outside help with our gentleman . If he needs to see a Dr. one will come to the house. I will be with him till the end, God willing ! He gets great care from all the girls and I feel he will be with us for quite some time yet. It was his decision to go on the feeding tube, His son left it up to him. He got where he was chocking on purred food and needed the feeding tube. He is very stiff which has gotten worse the past year. We do range of motion on him to try and keep him limber but it no longer helps much :{ ... His son purchased him a big screen TV which he enjoys very much and was one of the best things he could of done for him because with this PSP his eye sight got worse. He enjoys watching old movies and "I Love Lucy" gets him laughing every time :) ... He likes listening to classical music or the big bands so we play this music for him.... He also enjoys the news. I got him one of those night lights that light up the entire room at night with stars on the ceiling and this helps him fall asleep. He is not on any pain medications because he is not in any pain. We will put o2 on him if we feel there is a need for comfort. I am glad I have this opportunity to work with this man and to make him as comfortable as possible during his journey with this PSP. I have learned a lot taking care of him and continue to learn different things ! .... Little things mean a lot, like mouth care, repositioning , skin prep to heels, pillows for comfort, creams, lotion and things to keep him stimulated. Our guy has no skin break down because of the great care that he gets, and, yes I am patting us on the back :)... We also put his bed by a big picture window so he can see outside, Rain, snow , sun, trees, these things he needs to see. ..... well, I hope this helped in some way for a better understanding of where we are at this time. Any questions please feel free to ask. God Bless, ......Kandi

  • Wow👍🏼

  • Kandi, you and your team sound amazing! You will definitely go to heaven -what a lot of effort and care you give this gentleman. I so wish some of mum's carers had as much empathy as you! I ran myself ragged trying to get this sort of care for mum in those moments when I wasn't there. They were genuinely very upset when she died and it was as if they really hadn't taken on board what I had said, how PSP works and why I was striving for a good quality of life for each day.

    Dianne x

  • Thank you for the kind words:)

    I feel very fortunate to be taking care of my patient and giving him quality care. His son oversees us and demands the best. He has 24 hour care and very fortunate that he can do that. We all try to treat him as though we would are own family member. It does make me feel like I am making a difference in someone's life . I am sure you did the best you could do for your Mom and I am sorry for your loss. This was all so new to me four years ago and so glad I am there for him during his journey. I am sure all the other girls that take care of him feel the same. I am only there 48 hours a week so I don't feel all the frustration that comes from families that have to deal with it 24 hours a day. I wish you peace with yourself and you sounded like a great daughter :)

  • hi kandi

    yes you and your team r doing a grea tjob

    and plz stayh on the site as you have lots of useful knowledge of this PSP 0- it is unique for each patient

    i think i msut have the slwo sor tas i am sitll here (upright a lot of thetiem apart from when i ahv eflalen ono othe floor and see life from the cat/s point of view)

    plz excus emy dsyslexic typign (!) which i use al the time a smyi handwrigtgni has gone competely and it si difficult ot co-ordinate anything any more

    so igt si good tha tyou ar prepared to help this dear man

    and you are a good egg!

    lol JIll

    :-)

  • HI JILL HOW ARE YOU DOING ?

  • Hi Jill,

    Thank you also for the kind words :) .. I do know that each case of PSP is different. I am glad you are doing well :) I have seen that you have a great cense of humor at times reading your post. I have learned a lot just by reading. I don't know a lot of fancy words about my patients PSP but I do know how to take care of him and his wants and needs . Look forward to learning more from you great people :)....Kandi

  • Hi everyone

    I would like to share my mums story with you.

    She is a 76 year old lady who is now in a nursing home. We were told about 3 years ago that she probably had PSP after researching the illness myself. However it is not documented in her medical notes.

    My mum started falling about 9 years ago and then we gradually noticed a change in her behaviour, she was not showing signs of dementia but anxiety. She would ring us constantly to find out where we were and when we would be going round, she would also ring in the early hours of the morning. We since discovered that she had her days and nights mixed up. In 2009 after 2 years of trying to get a diagnosis without success we decided to extend her house and move in with her as the falls were becoming significantly worse and she had been hospitalised twice. My Mum's behaviour was very strange she would go to bed at 5.00pm and wake up at 7.00pm thinking it was morning then stay awake all night in the chair. She was very determined and would not listen when we told her it was not morning. She would then become quite angry and unco-operative, however when we saw the Dr and she was asked the usual questions to dertermine if it was the onset of dementia she would get them all right, she almost returned to being my Mum again in the Dr's surgery it was so frustrating but we knew there was something wrong.

    In April 2010 my mum broke her foot which went undiagnosed for weeks, by the time the break was diagnosed it was too old and nothing could be done to repair it in May 2010 she had a very nasty fall where she broke her hip she was so ill by this time that she spent the next 7 months in hospital. She came home for 2 weeks and ended up back in hospital where she fell and broke her hip again. The advice we were given was she needed 24hour nursing care and supervision. She has been confined to a wheelchair now for 2 years and is now showing all the signs of PSP, stiffness, slurred speach, problems eating, eye movement and vision. Still we have no conclusive diagnosis as my understanding is that they can only conclusively diagnose PSP with a post mortem and everyday I live with the terrible guilt I feel that my mum is now in a nursing home and I can't care for her myself.

    My heart goes out to all of you that are caring for people with this terrible illness and I am full of admiration for those of you that care for loved ones, it is a very difficult job with very few rewards.

    Regards Lorraine

  • WHERE DO YOU LIVE LORRAINE ?

  • DEAR LORRAINE - I RE READ YOUR BOG AND PICKED UP ON THE GUILT YOU FEEL NOW THAT YOUR MUM IS NOT WITH YOU ANY MORE - I MEAN THAT YOU ARE NIT ABLE TO CARE FOR HER YOURSELF - I TOO HAD THE VERY SAME GUILT WHEN MY MUM HAD TO GO INTO A HOME BUT I HAD NO OPTION AS AHE WAS FALLING ALL THE TIME - WE NEVER GOT A DX THOUGH AS IT WAS ASSUMED SHE WAS JUST OLD AND FRAIL ]- BUT I AM NOW CONVINCED SHE HAD PSP AS SO MSNY OF THE SYMPTOMS THAT SHE HAD I ALSO AHVE NOW

  • SHE WAS 93 THO WHRN SHE PASSED AWAY VERY PEACEFULLY WITH ME HOLDING HER HAND AND TELLING HER WHAT A GREAT MUM SHE HAD BEEN - I AM STILL CRYING THOUGH AT THE THOUGHT OF THE LACK OF CARE SHE GOT AT THE END WITH THE HOME STAFF AND THE NHS

  • Lorraine, PSP can be diagnosed by a neurologist. PSP like many other illnesses is not diagnosed with tests but is diagnosed by symptoms (early falls and eye movements specifically). In my opinion any doctor who would not make the diagnosis based on observations is missing the point of making a diagnosis. Most diseases are more diagnosed by observation and symptoms than by tests. Think back to illnesses you have had that have been diagnosed by symptoms (colds, measles, chichenpox, mumps, and many many others). True that only a biopsy of the brain tissue can positivitly diagnosis PSP but that doesn't mean it can't be diagnosed while the patient is living. There are specific symptoms in PSP. Hate to get on my soapbox but it seems you were saying a diagnosis could not/would not be possible. Hang in there. You are doing your best for your loved one and I'm sure they know it.

    Jimbo

  • Thankyou Jimbo the diagnosis was done by a neurologist and her specialist at the time but as I say never documented or followed up I have fought tirelessly over a long period of time to get more help and information about this illness for my mum till in the end I gave up as my health started to suffer. I have researched everything I know about PSP through the internet and have emailed different PSP groups which has helped enormously but it is crucial to anyones care that you are listened to by the Dr's treating her. I feel stronger again now and am determined to get some answers from the Dr's. so she can hopefully have the best kind of care in the time ahead.

    Lorraine

  • Just caught up with these blogs. Jimbo is correct and any neurologist (especially one who specialises in movement disorders) can give a confident diagnosis of PSP from the clinical signs (and your mum I believe from your description has the classic sign of vertical gaze palsy - unable to voluntarily move her eyes down and eventually up. This is where the name progressive supranuclear palsy arises, as you will have discovered in your own research). They often follow up with scans and tests to enforce their diagnosis (and sometimes rule out other possibilities, which in the case of PSP/CBD would be rare). An MRI scan can show the classic midbrain atrophy as the "Hummingbird Sign" and this can be a useful tool in diagnosis.

    I'm assuming that the UK has similar systems (as in Oz) for specialists to inform the local doctors (treating your mum) that they have diagnosed PSP. If your local doctors knows little about this condition (and many do not know much about it), they should train themselves in the symptoms and care schedules.

    Many of us here have found the need to be proactive and teach the medical profession about this condition (nurses, physio's OT's and doctors).

    If I was in Shropshire I'd go with you to any doctor and explain this disease to them!!!!!

    You certainly need to see the medical documentation from your mum's neurologist - through the freedom of information if necessary (I think there are some NHS laws about accessing records)- and see what he has written. You say he never documented the diagnosis, but I believe that would be against medical ethics not to document his findings.

    All the best with caring for your mum and your quest for answers!

  • Thankyou StrelleyI think the biggest problem we have here is that nobody seems to know anything about it. I think the fact that i had to point it out to her specialist speaks volumes. The replies I have recieved in the last few days have made me feel stronger and determined I will get some answers now. I have complained in the past and as I say fought hard to get some help but I was very close to a breakdown in the end and felt I had to give up for the sake of my family, I am so glad there are people like you and the others I have shared my story with to talk to.

    Lorraine

  • Your story is so similar to mine and I too felt bad about not having mum here at the end. If I had known how quickly she go I would have done it as it would not have been so hard to give up work for a few months. However mum was making such amazing comebacks from infections that we never knew how many times she would do this and I nearly had a break down before the hospital persuaded mum to have carers coming in. It was mainly the worry of what mum would do every time I went out of the room and I couldn't do it all by myself to to health issues. I did oversee mum's care at all times and as I say they didn't seem to really take on board how close mum was to losing all her muscle functions until it happened. We had the same issues with the recording vs diagnosis and even had to convince and educate the GPs from our own research. Mum had the classic signs and symptoms right the way through even down to the microscopic writing and the confusion over night and day but I would say with hindsight that the sleeping disorders cause this-she was having very heavy sleeps at irregular times and it was leaving her disorientated. I got a day clock from the Alzheimers website to try and help her- the hand shows which day it is and how far the day has progressed. I wish I had got that sooner because mum would have got use to using it. But of course her poor eyesight didn't help either.I feel that the neuro was not interested after he diagnosed her which is strange as you would think a good neuro would be interested in a supposedly rare illness. But he seemed to think she was going to go downhill and there wasn't much point in getting involved!

  • Hello I am sorry to hear that you have lost your mum to this illness. I can also relate to everything you have said and feel the same as you about the diagnosis from the neurologist, that what was the point of getting involved when there is no cure.But surely it is also about the care?.

    Can I ask did your mum ever tap her hand my mum constantly taps her hand on whatever she can and will bang cups on the table. We have put this down to anxiety and the fact that she cannot walk and gets very aggitated if she cannot get anyones attention (But once again, our thoughts, not those of the medical professionals). She also presses her bell quite a lot during the night which causes problems, she knows she does it but never admits to the amount of times. When I ask her about the tapping she says she cannot help it.

    Can I also ask how old your mum was when you first noticed the symptoms?

    Thankyou for these replies it makes me feel that I am not making a fuss over nothing which has been the case in the past.

    The good news is I have sent a letter today to her Dr saying that I want some answers now. Fingers crossed.

  • Hi Munchy, no mum did not tap her hand, but before she was diagnosed she kept on twiddling her thumbs together. Mum had sensitive ears so I think tapping would have annoyed herself more than other people. the thumb twiddling didn't bother me but it nearly drove my sister mad! As for pressing the bell, mum went from never pressing it to having a whole night doing it but it only happened a couple of times. Mum was about 69 when the falls started but they were very spread out -like one every 6 months but accelerating into one a week, and so on. Also a slight change in her behaviour like getting shirty with me, losing the ability to show discretion when other people were talking and ringing people to see where they were at the most strange times. When she got to middle stage she was in sheltered housing (for her safety) but kept going to the coffee morning on all the wrong days, sometimes 3 times in one morning people would have to tell her it is tomorrow or yesterday.

    She was only fully middle stage at diagnosis -4 years or so into her initial obvious symptoms and had a semi stable 6 months on 10 madopar a day before getting a serious infection when we thought we would lose her. She came back from almost dead in August by sheer willpower. She was able to walk with support and go to the shops with me in the wheel chair and I could get her in and out of the car by myself, Mum even came back for lunch and out for meals but the day after Boxing day she had dropped suddenly into the very depths of end stage overnight.She woke up only able to move her eyelids and her face was swollen as if all the muscle had gone.. She never walked again and could not talk at all except for one day 2 weeks later at the peak of antibiotics she was taking when bizarrely she could talk all day (only the odd sentence) but then she never spoke again.End stage was thankfully swift for her-about 6 weeks in all but only really bad on the last 2 weeks where she was definitely fading fast. She could swallow up to 3 days before she died so I am so grateful for that.

    I never expected a cure, just more interest in how mum was doing and what the care package could do for her.

    But everything came too late for mum as she progressed too fast for the paperwork that ensues with decisions.Even the death pack that should have come to quieten her breathing arrived just seconds after her last breath due to administration issues with the GP surgery!

    I miss mum a lot but would not have wanted her to last any longer than she did-she was once a fiercely private and independent woman and must have hated every minute even though she was able to laugh at herself.

    I am only glad to be able to help. So feel free to ask anything else. I will not bombard you with the science of it all as we can all look it up on the internet. But I will pass on tips if they are any use.

    Take care , Dianne xx

  • Thanks Dianne I would definately like to be able to compare stories, it doesn't change anything but it really helps to know you are not going mad and making a fuss over nothing and that although thankfully this illness is rare there are others who know exactly what you are going through.

    Look forward to speaking again soon

    Lorraine .

  • Hi Munchy, caring for someone with PSP is difficult as there are no two cases the same, my husband was diagnosed in 2007, he can still feed himself, walk with a walker, and talk so that he is understood, and watches movies and also reads large print books, so I am often amazed at reading other peoples experiences of PSP What length of time does this disease take some say 5yrs/7yrs either way I too had to put my husband into a nursing home last year because of his many falls, being on my own and not having any family support, I had to think long term of my own health,as well as his because with the falls he was cutting his head bad enough to have to have it stitched, guilt does set in too, So above all of that one has to think of their individuality and there rights and also there independence, as my husband does not like to be told what to do or bullying which he sometimes gets at the nursing home from one of two of the RN I make allowances sometimes for being busy.but!!!!

    I hope this helps it takes a while to get to understand the disease and the effect on the patient, Kind regards stay well yourself so that you can be there to help.Jo

  • Thanks Jo My mum started falling 9 years ago but we had no idea it was linked to anything, just clumsyness, we lost my Dad around about the same time so thought this was also a big factor in the slight changes in her behaviour. It became significantly worse in around 2008 which is when we made the decision to move in with her. Mum would have at least 4 falls a week most weeks and some were bad resulting in nasty head wounds and stitches. My mum's health has deteriorated significantly in the last few months and I finally have had to resort to feeding her now, she does have the odd time when she chokes but thankfully this is not often. Thankfully most of the carers who work with my mum are great but I have had occassions where I have not been happy with how a small minority have spoken to her. I always make sure the managers know there is no excuse for unkindness they may be busy but I have the opinion that if you go into a job caring that is what you do. I am sorry to hear that your husband has also been on the receiving end of this totally unacceptable behaviour.

    Regards to you also and make sure you look after yourself also I know exactly how you feel when a loved one goes in a home but at least ours have visitors and people who care which is not always the case for everyone.

    Lorraine

  • Lorraine, thank you for sharing, this is a great outlet for people to share there experiences of the disease, Ron chokes sometimes too a s he did today whilst I was there watching him have lunch, its scary isn't it, Have a good day. Jo

  • hi SHARON

    I AM NOT 2 BAD BUT FALLING MUCH TOO MUCH UNTIL TODAY WHEN DESPTIE BEIGN UP ON GHELOO ALL NIGHT HAVE NTO FALLEN AT ALL

    (AM HAVING A DAY OFF CONTACT AND STOPPING IN ON HTE BED WITH HTE CAT FOR A BIG CHANG E FOR ME

    I AM NTO SAYUGB MY USUAL "I AM GOOD " WHEN ASKED B Y ANYONE AS I HAV EBEEN FIGHTING OFF A SORE HTROAT AND COUHG FO RA FEW DAYS

    AND AM WAKING UP CHOKIGN AT NIGHT

    MY BOWEL AND BLADDER HAVE BEEN DIRVING ME MAD WITH FRUSTRTION BUT AT LEAS TI HAV EIT ALL INTACT!

    MORE LATER

    HOW R U DOING ??

    LOL jiLL

    :-)

  • HI AGAIN JILL .#

    SORRY TO HEAR THAT YOU ARE NOT TOO GOOD - GET THAT COUGH CHECKED OUT THUGH AS T MAY BE BRONCHITIS =

    OK ?

    LOVE FRM SHA

  • hi jill keep your chin up mate and keep smiling i know a sore throat and a cough will not keep you down mate take care peter jones queensland australia psp sufferer

  • Thanks for your kind words. It is so awful that there is not more known about this terrible illness. We live in shropshire. Mum is looked after well but unfortunately a lot of her behaviour is put down to her being un-coperative which of course I know isn't the case. Hope you dont mind me asking but how old was your mum when she first showed signs of PSP

    Lorraine

  • Kandi, Thanks for participating in this fantastic group. We all need the input, advice, and reassurance of others in the PSP struggle.

    Jimbo

  • Thank you Jimbo ! I am glad I found you all. I have been reading for quite some time now but just recently joined...

  • Hi Kandi,

    Great job you are doing. Wonderful.

    I found that my husband (PSP) didn't like the light because of dry eye and reduced blinking. Please check with your gentleman that the light isn't a problem for him, although I'm sure you already have.

    It is heart lifting to hear from carers who really do care. I love you for it.

  • Hi Katherine,

    My patient does not like the bright sunlight either so we put sunglasses on him when it is shining in his eyes :) He was able to tell us this when he could still talk. The big window by his bed has a large canopy at the top that shields his eyes from the bright sun. Thank you so much for the kind words..... Kandi

  • hi all

    i am wating for mhy partner qto coem back from his 3rd op on his right eye

    (accessful for 3 months then) 1 cataract

    2 detached retina

    3 today to repair the scar tissue lef tbehind

    so i have other qthing son my mind oqher than this PSP /coughs and sore throats

    the ca tha snoat been well eithe r- pussy cystitis btu i HOPE he is onthe mend

    and thirdly mhy dad aged 91 had a suspected mini stroke 2 weekend sago and we had amercy dash to see him and ensure he wa sok- he was and i tmayh welll nto hav ebeena stroek at all - no probs when he had the (mRI) scan on monday

    4THLY My ex husand who si nwo a agood friend is going for an endoscopy tomorrow as he has a problem eaeitng much a tall

    the tests seem to have to en done b4 refereealto a consjltant now in ENGLAND

    Worsenigni fo NHS conditions

    so a strange week fo rme and mien

    i hope it is all resolved soon for all fo them

    i ahv ebeen v weeophy again ithis week apart from today

    it si the PSP i knwo but is difficult to deal with

    lol JILl

    :-)

  • scuse all the typos those of uyou who know me cna read it anyway1

    lif eit too short ot be able ato correct everythign

    lol jill

    :-)

  • Hi Jill,

    Sorry to hear you are not so good at the moment and hope you feel better soon.

    I have found your blogging so useful, because you give me the insight as to what is probably happening with my husband. He is not able to express himself and hasn't been able for a long time. So thank you Jill.

    Peter3.

  • Dorothy-Thompson

    Hi daughterno1

    I can so relate to what you're saying, I had the same re-action from my husband's neurolyogis when he was first diagnosed in 2010 " the NHS can do nothing more for you".

    dorothy-thompson

  • HI DOROTHY AND PETER 3

    U R BOTH SO KIND TO TKAE THE time OT READ HTESE DYSLEXIC BLOGS FO MIEN

    HTANKS TO U ADN ALL THE OTHERS ON THE SITE TOO

    LO l JIll

    :-)

  • I just want to share my frustration now. I have recently become part of this site and it helps me so much.

    Today I have spoken to my mums Dr and explained that I have never been conclusively given a diagnosis of PSP for my mum and feel very frustrated that it is not documented as her care plan needs to be considered if this is what she has. I have been told by him that a diagnosis is just academic and her medical needs will be adjusted to meet her needs. I am afraid I lost it a bit and said maybe to him but to me it is crucial. I feel like everytime I ask for answers they feel I am going to try and claim compensation or am I just being paranoid? I have insisted she see a Neurologist but feel they are all closing rank now, so upset and fed up with this all now. I just want to do the best for my mum.

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