Can you help me...

[angy24]

Hi! As I told you before, my father was diagnosed with PSP.Last week he had a respiratory infection with a fever and everything got worse. My father fell 3 times that night. The infection has now been practically treated, but walking difficulties persist. My father gets up during the night without calling my mother. He has episodes of incontinence, doesn't get to the bathroom in time and urinates in the hallway. Refuse to use a container to urinate or wear a diaper at night! Tonight he fell again! I do not know what to do. Has anyone gone through this? What strategy did you use to overcome this situation? I feel lost, not knowing what to do to prevent my father from having more falls and to help my 70-year-old mother take care of him. Can you help me? 🥹🥹

[Millidog]

Hi Angy24 so sorry you've had to join this club and are experiencing psp with your dad and I know it's hard when just diagnosed and you don't know where to turn. I am sorry to say what you describe is common in psp and there fan be both gradual declines and step changes especially after falls ir infections. Sometimes yoy might find a slight settling and improvement but I'm sorry to say mobility and balance are affected and are likely to deteriorate further, you are also e periencing your dads implusivity and apathy along with the psp person wanting and still thinking they can do everything and as psp affects many brain functions it does affect messaging for effective bowel and bladder control. It can be quite hard reasoning with the person - it's the disease not them but also they will be finding the diagnosis and change in ability, dignity etc very difficult. You and your mum need help and advice. If yoy haven't already do call the psp helpline they are wonderful and can explain symptoms and can signpost you to services that can help. Not least you need to get in touch with OT and physio who can help with equipment everything from grab rails to walkers and hospital beds and more, bowel and bladder nurse, speech and language nurse. Sometimes the person listens more to a professional than to a spouse. Each area runs differently and pspa would probably know if you have a parkinsons nurse or neuro nurse or similar in your area and whatever additional help they may be. Frustrating as it is I repeat, repeat and repeat instructions to call me when husband needs assistance and he has a buzzer that rings in 3 rooms when he does, it doesn't always help and he may try and get up unaided but I've found repeating has helped over time and the person becomes more used to asking, also pull up pants were accepted as they are more like normal pants. If he constantly refuses have you tried insisting and explaining the impact on your mum? Also having some care in can help at least to give mum a break. I don't know at what stage you're at and what dad's other needs are but we started with a few hours a week more company than anything but they would help with toileting so I could go out with confidence but also to get used to carers. It's worth considering as it helps as you need to increase care support as things progress. I know it's not answering g your question but do read everything you can find on psp and all the resources on pspa website as it will help you get things in place in advance of needing them and do read up on chc funding for future. So I can't give more positive news but if you want to chat further just say Millidog xx

[Kelmisty]

Sorry, but there isn’t much you can do to prevent the falls all the time your Dad can stand up and walk other than supervising him every minute. Your Mum needs you to support her and potentially get in external carers to help if things are too much.

My Mum is 70, she has PSP and CBD, these illnesses give you no warning of what will happen next, but they are progressive so they just get worse. My Mum refuses to do some of the advice we get too as she’s stubborn but it doesn’t help anyone.

If you have a neurological community team involved there occupational health maybe able to provide some tools to help your Mum with lifting your Dad for example an inflatable camel to get him up off the floor.

Sorry this journey is a tough one and I’m 3 years in of being Mums carer, she should be in full time care but refuses so I spend a lot of time on emergency response, in hospitals checking bones from falls, managing everything - it’s not easy. Hopefully you are close in distance so you can help your Mum and give her some down time regularly so she doesn’t burn out.

It’s common for things to be worse when they have an infection- sometimes they improve after the infection goes, other times they don’t.

Reach out to every service you can.

[Sun-flowerwearer]

Hi

Unfortunately the only way to prevent falls is to be with them 24/7 in the same room. It’s like intensive care but it goes on for years. My husband lives in our open plan lounge. His hospital bed and recliner chair are a few feet apart. My single bed is also in the lounge and the only time I leave him is to go to the loo myself. I can almost guarantee in that 5 minutes away he will attempt to get up and move. He can’t move unaided so that’s when a fall will happen. He’s advanced to the point he can’t move his torso if lying down so if I shower I put him in bed as he can’t get out of bed. Your mother will need carer help but even with a few hours of help she is still left looking after someone who cannot stop themselves from impulsively moving .. it’s the disease that has damaged the brain. The in continence and bowel issues are also part of the disease. It’s extremely tough on the carer as well as the sufferer. Your mum needs to ask for as much help as possible from GP, OT, social services, neurologists, hospice. There’s no easy answers sadly.

[Zerachiel]

Hi, There are practical aids to help manage the getting up and falling; an OT or social services can provide pressure mats, there is one you put under a rug next to the bed which triggers when you stand on it and one for a chair which triggers when you get up; they set an alarm off on a device you carry around with you so you know they have got up.

There are also alarms that you attach to the chair and clip onto their clothes, these are very good if they are impulsive and forgetting as the alarm goes off as they get up reminding them to sit down (they have 2 loudness settings so you will hear it too)They won't help if they are getting up "on purpose"

NRS Healthcare Patient Alert Alarm amzn.eu/d/bSg6wZh

You can get them from Amazon ( above) I also have a couple of these I am selling if you want to message me.

[Blitzford72]

Hi I'm so sorry your going through this ,you need to get the council involved with a social worker , unfortunately my my dealings with them hasn't been great .

But you need assessment on him and get careers in to help your mum and that is the person who you need to keep an eye on .

Just get as much help as you can ,it won't be easy and patchy

Good luck xx