My poor mum

[Blitzford72]

Hi I just need to have a rant and I'm sure you will understand.mum has been diagnosed with psp 2 years ago

Mum is in a residential home ,but unfortunately her falls have become problematic.

She has a fall last week ,smashed her face on the radiator,I know it is very unusual to fall forward ,this is the first time she has done this .she broke her nose and they thought she had broken her hip ,so yet another trip up the hospital .

X-rays done nothing broken horray,so we took her back to the home with some cocodamol she was in excruciating pain .

Only to get a phone call from the home to say the hospital had rang and she has a fracture 😥

So another trip for my poor mum of 87 ,she has a alvusion fracture .

Her speech has absolutely deteriorated and now she isn't really eating ,she was sent back to the home .

The elderly 'arent giving any respect and especially when medical professions don't even know what you are talking about as regards psp.

"Oh what is that "

Rant over thank you for reading

[LittleOllie]

I can empathize with your situation. The care home have a duty of care to make sure your mom is safe. There doesn't appear to be much awareness about PSP so you will have to advocate for her. In the past we had some cards for my mom who had PSP from the PSP association which were given to people about the condition. With my mom's care we found that we had to keep explaining the same things over and over again and also tell the carers that my mom wasn't deaf or stupid

[Loveispatient23]

Hi Blitzford72, so sorry to hear about your Mom's fall. Please don't worry about venting your frustrations, this is a safe place to do so, aswell as gain valuable advice and support on PSP/CBD.

Unfortunately, more awareness is needed with regards to PSP/CBD. The PSPA have been brilliant to us helping with much needed information and guiding us through as well as raising awareness on social media. The Health Professionals need more training on this rare neurological disease as there are a lot of misdiagnoses wich are put down to Parkinsons, which is awful in itself. PSP/CBD brings up an awful lot of other health issues.

We, as a a family had never heard of PSP until my father-in-law started falling backwards and had other symptoms attributed to PSP. We knew before we were officially told it was PSP as we had been keeping a log of medical details every time my father-in-law went to the doctors and desperately tried to look on the internet with the symptoms. More must absolutely be done to help to limit the damage/find a cure/appropriate medication for this cruel disease.

I hope the home are monitoring your mom with regards her pain as if her speech is difficult to understand it is very hard for her to communicate this with them.

I wish your mom well in her recovery.

[David750]

Hi Blitzford72, your situation is distressing to read about. I am so pleased you are in touch with the PSPA and I suspect the Health Care Navigator for your area. The PSPA are able to educated care home staff in the management of PSP either on line or in person. Has this been raised with you yet? All my very best wishes to you and your family

[Kelmisty]

Until your Mum can’t get up on her own the falls will continue to happen. They can’t stop her getting up but they can’t supervise her 24/7. For three years I tried to with my Mum.

We moved her in August to a nursing home, shes had two falls there but now she can’t walk or stand up without full assistance the falls have stopped. PSP is cruel and the urgency people get up and try to walk scared me, before she moved Mum was falling multiple times a day, all directions. At Mums home they have put crash mats all around the place one of the residents sits as he has PSP as well but still tries to get up then falls within a metre of where he stood up to try and prevent injury.

We had the same with one of Mums falls she fractured her arm but they didn’t tell me until a week after the trip to a&e. I always attend every appointment with the this is what PSP and CBD is, this is how it effects Mum and this is what I need you to do.

Feel your pain.

[MRSYafffle]

Sending loads of love and hugs.It's a tough road, rant away x

[MyDad1]

Unfortunately the health professions are useless. When my dad was in hospital they weren't interested even when we tried to explain. Keep strong as it's not easy as my dad had PSP.

[LeafCuttle]

Rant welcome here. Getting people to listen can be so frustrating. Really hope you have better luck that we did.

Your poor mum! Impulsivity is a symptom so the home could have foreseen this if they had learnt about her condition. Pspa can send them literature or offer to run training for staff. There's even an interactive website for professionals hscpguide.com Might be worth contacting her consultant to see if they have any ideas why the falls are forwards as like you said backwards is more usual.

[JAK63]

I feel thankful that I have found a safe place for my husband where the medical staff have taken considerable trouble to acquaint themselves with this complicated and horrendous illness. I will say that some of the less experienced carers don't always get it right but that is the failings of human nature rather than efforts by the medical staff to make sure all the carers understand his needs.

He actually had a visit from a very experienced and very caring consultant today whose speciality is Parkinsons but also has a good knowledge of PSP.

So, not all health professionals are useless (as someone earlier said). Many are caring and doing their best in a over worked, stressed profession.

My husband is in the final phase of this illness and I am his voice. He understands but cannot communicate.

I understand your rant and despair. I've been their too.

Best wishes to you and your Mum.

[Leosta]

I'd like to bet your Mum didn't fall forwards but sidewards and in trying to correct the fall turned her head. My husband did this repeatedly in the later stages when his mobility was seriously impaired. When he could walk and was standing still he fell backwards, then it changed to falling sidewards. He would go down like a falling tree: think David Jason in Only Fools and Horses falling through the bar. Frightening.If your Mum's speech has deteriorated AND she's not eating much could you get the hospice involved ? Contact her GP and district nurse. Not sure how it works in England now, I'm in France, but get ranting at anyone and everyone who's in a position to help. Good luck and hugs. 🫂

[PineEater]

Hi, people responsible for taking care of your mom must see to it 24×7 that she doesn't fall (whether forward or sideways or backwards). If a person with PSP falls, that means the carers are careless. . If she isn't now really eating , her swallow needs to be immediately evaluated. Swallowing problems must be considered as life threatening as indeed they are but unfortunately these progress rapidly. Best wishes to you and your mom

[Rose1sunflower]

We all need a rant now and again! So sorry you are going through this. It is so frustrating when you go for medical help and you have to explain what the diagnosis is, it doesn’t fill you with confidence does it? Hope you find some medical help who understand and can help. Love and hugs

[ckb4]

it’s this wicked disease…my 80 yr old sister has it..Dx 1 yr ago but I’m sure she’s had it years longer as now she is in end stage..she fell out of bed so often in Assisted Living trying to get out my of bed.. hospitalized and now in long term care past 11 months..w/ one on one aide…being in hospital better for your mom than back where she lived unless they give her more care.. you can talk to staff at hospital about her PSP…talk to head Dr… and they don’t want her falling there’s will give her more care… it’s ok to keep asking medical professionals if they’ve ever heard of PSP.. and educate them as best you can.. I tell people to ‘Google it’ too…God bless your mom and God bless you!!..

[maxandpoppy]

My husband's nursing home's response when we offered a staff training session from PSPA. Well they can come if they want but I don't suppose they will tell us anything we don't know already