Although I have been a member of this forum for 3 years I have never had the nerve to actually post anything, but with the help of my son I have plucked up the courage to say "Hello".
I care for my Hubby who is only 64 years old but has PSP, he was diagnosed 5 years ago. We have both retired to try and enjoy some quality time together.
I was a Nurse and have to admit caring for a loved one 24/7 is infinitely more difficult than anything I encountered when I was working, one of the things I find most challenging is having to be "hyper aware" and keep an eye out for falls or random activity. This makes me extremely anxious and I often find I drop everything and run to check at the slightest sound.
Would love to know if any of you have any tips or if there are any other nurses out there and how you are coping.
Look forward to hearing from you.
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So glad you've found your voice. This forum is a safe place with an abundance of experience to offer. Don't be shy, ask any question or make any comment, you're bound to hear from others.
I love that pic of coastal inlet on ur profile, rocky with gorse? And that you have a voice. Sounds like you are super-caring ... so go a bit easy on urself! I am 80 diagnosis PSP 4 yrs ago, and seems quite slow deterioration. There's no 'cure' so I put myself on to healthy regime of exercise, diet, therapies, supplements and good friends. Lots of adventures and experiences! Have made a 4-page summary incl suggestions and advice. If you like a copy best to send me ur email address (if u dare). Mine is twillcocks2@gmail.com. Best wishes to you all, and love TimbowPSP
I too am a nurse and have had a difficult few years first of all nursing my dad through his final 2 years, following a misdiagnosis of melanoma he passed away April 21 aged 73. During his illness mum had noticeably started falling increasingly more always found on her back rather than her front, speech was sometimes slurred and her gaze was more fixed. Her gait had changed and despite numerous calls to her GP he never came out to see her or took me seriously.
After dad passed mum started ringing me both day and night for random things or because she had fallen( she had a lifeline and carers going in 4 times a day but hated it so instead would tell them she needed nothing then ring either myself or my sister)
One night she fell whilst getting up to use the commode, her lifeline she had placed out of reach and so she was laid on her bedroom floor for 10 hours until the morning carers went in!
To cut a long story short the registrar on duty when she was admitted recognised all the signs and told me she had PSP - she was discharged to a nursing home because of how frail and dependant she had become as he told me she needed 24 hour care and things would only get worse.
Fast forward a year she is now fully immobile, hoisted from bed to chair, has lost her speech so uses an alphabet chart to point out words, partially incontinent but has thankfully still got her swallowing.
Admitting mum needed round the clock care was hard especially being a nurse I felt I was letting her down, but I have regained more of a mother/daughter relationship back ( as well as being able to sleep at night knowing she is being looked after)
I won’t say it’s easy as I visit every day but it’s easier, I still feel guilt as some days when I go in she is emotional and makes a wailing noise asking me to either take her home, to the hospital or that she wants to die to be with dad.
I wouldn’t wish PSP on anyone it’s massively unheard of all the information I have ever got was either from the internet, this group or the PSPA anyone I ask has never heard of it, a lot of the carers still say she had Parkinson’s.
Wishing you well and sending my love as you continue your journey from one nurse to another x
My wife 52, was diagnosed with PSP 4/5 years ago... I was caring 100% and fortunately over time I have found nurses to first come and complement and more recently I'm caring only for 1 quarter of the time... Its a long marathon and there will be moments harder than others. Be prepared to have help before you really need it. Also, after 4 years since diagnosis and 7 since onset of first symptom, I can say that it does get hard, but ultimately it then becomes less hard to manage.
On the falls, this might sound disturbing, but we just made peace with the risk. Maria fell numerous times, somes times badly, but only on one occasion i had to bring her to hospital to straigthen a finger. There is more than one occasion where her head passed millimeters from a life threatening object.
Then, at a certain point when walking had just become too hard for her and for us helping and that totally solved the falling issue and that was the wheelchair arrival. We got a nice shiny red one. Seems like a negative step, reality is that it was good, both for her and for us
Find time for yourself... think long term... you are a nurse, you know well that one needs to be fit to help others... Mentallly and fisically... I started loosing the plot mentally, and that was a bit because of the growing difficulties, but also because I was getting exhausted fisically.
Glad you found the courage to post here.. there is a lot of help available... just ask and plenty of suggestions and ideas will flow
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Saying hello on behalf of my mum who has PSP and her daughter - primary carer
Courageous Mum
Time to say goodbye and thankyou
Someone has to stick up for our families.
Hello
