Hi. I am feeling really sad as mum had a fall at 0.400 on Monday morning and knocked herself out. Dad woke up to find her face down full of blood and couldn't wake her. He called an ambulance and she was admitted to hospital with bruising to the front of the brain,and they also found a small clot that they think is an old one. They kept her in for observation. I really don't know where to go from here. Here falls are so frequent now, and short of holding her prisoner, there's nothing we can do to stop them. We have had Neuro Physio and OT assessments. Dad's also waiting for a heart valve replacement. I feel out of my depth.
Mum's in hospital : Hi. I am feeling really... - PSP Association
Mum's in hospital
Dear Lindsey48,
You are certainly being tested! Remember above you are one person. And two people and three CANNOT do all! It takes an army with PSP.
I recall being infomed one morning at hospital that I had full responsilbity to be with my husband when ever he started to fall . I automatically felt guilty for not being so - until comonsense kicked in again - That is not possible for anyone - you and your father included for it takes a REAL 24 hour day - 7 days a week - 365 days a year to provide full time care.
You've done the right thing - assessments and tests are underway. Your Mum is in hospital.
Work with the allied medical staff and hospital social workers - I am presuming they have been in contact with you - if not find out what they can do to cordinate, provide and assist with.
AND IF it is at all possible try to rest as much as you can - because being sleep deprived is the worst as you are finding out I am sure!
Remember what ever decisions wil be made - None will be perfect. However they will be the best, because they will be done with care, compassion and knowledge.
Regards,
Alana - Western Australia
Dear Lindsey, I wish I something practical to offer, but all I can say is that I understand something of what you're feeling. I just started calling in professional counseling for us both, because I know I'm getting out of my depth now, too. What to do when keeping someone safe means imprisoning him or her? (Which is illegal as well as impractical!) The falling is so very terrifying. But to deal with this while your father waiting is for surgery? That is a such tough situation. I hope you have someone there to share this with. I was glad I talked to a counselor last week; she gave me practical advice when I said that's what I needed. When I need emotional support, I think she'll be there for that, too. I got lucky. Best wishes, Easterncedar
So sorry to hear about your Mum. It must be very worrying for you and your Dad.
There is a lot of help and support available for everyone affected by PSP. It is worth you contacting the PSP Association helpline, they will be able to put you in touch with services and support in your area.
If you just need a listening ear, they can offer you that too.
Telephone. 0300 0110 122
Email. Helpline@pspassociation.org.uk
Dear Lindsey, I know what you are going through with the worry of falling.This is the only reason I had to relinquish mum's care in the end and put her into a care home. Fortunately because I needed to go away for a couple of days to visit my daughter when she gave birth I had already tried out a place as I didn't feel I could leave mum in the hands of visiting carers as she was getting too risky. So when a few months later it became imperative she be watched 24/7 she was fine about going in full time and settled quickly. However even they were arranging to have sensors put into her chair or the floor to detect if she tried to get up when there was no one in the room. Unfortunately suddenly mum suddenly became too weak to get up by herself any more and the danger passed. But there are various sensors you can get to reduce the anxieties. They range in price but peace of mind is important. All of mum's phases passed too quickly for us to get all the gadgets in time to make life easier. Even the wheelchair we got to use in the home and going out was only used a dozen times as mum had a lot of down days. I found I was able to spend much more time talking to mum and listening to her when I wasn't running around trying to stay on top of the housework, laundry and dealing with her personal care. So it's not all bad and I was able to supervise her care needs and oversee her care plan. I still had mum home to dinner regularly and took her out a lot but I didn't have the struggle to get her ready before hand leaving me exhausted before even taking her out. I would call in every day at least once to help mum eat and spend time with her to check she was ok. She seemed pleased to see me every time and I am glad I was able to do that. Best wishes Dianne x
Thanks for sharing your experience, and I'm sorry to hear about your mum. It is really difficult, as mum asked not to be "put in a home". She is still in hospital as the ward sister is excellent and when I raised my concerns about mum coming home to the risk of falls, she said they would keep her in till they had an urgent social services review, and that we need some help with mum at home. I will keep you posted. Lindsey
Lindsey. Hang in there. There are devices that work on pressure and if a person gets out of bed the device under where they lay sends an alert. Same for chairs they sit in. This allows a caregiver to be aware and go to assist them before they can fall. There are also small portable lights you can put near the bed to give light to their area they step into. I'm finding there are aids of all kinds to help with PSP needs. Use the internet and, as you did, ask here for help.
Jimbo
For Lindsey48 -
The pressure sensitive pads we found useful - in the end the night sitter could use it to wake me if she needed an extra pair of hands for something. (Works rather like a baby monitor) The social services provided them for when Tony came out of hospital, so hopefully the social services review will be able to put together a good package for you.
Accept all help that's offered!
Mo