hi everyone, this is my first post on here as I only came across the site today.
My mum has PSP, she is 70. She’s at a stage where she cannot really walk much anymore, just enough stability to be transferred to her chair, struggling to understand her more and more each week.
today, she has been put onto soft food / puréed diet, I’ve read some great tips and ideas on here so thank you.
My dad looks after her full time, I don’t live with them but I’m only a 5 minute drive away, I’m scared he’s going to burn himself out and I want to be able to help more, but other than helping to prepare food/soups etc for her and help with housework I really don’t know what else to do.
Think I just needed to come on here and get it off my chest, struggling with feeling so helpless.
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Janice52
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I would investigate in-home help services and other entitlements your folks may have. Your elderley father looking after your elderley mother will be tough and the longer it goes on, it will come to crisis. In the meantime, helping with cooking and keeping kitchen and bathroom clean, and also if you could do some care/supervision time to give your Dad a break, that would be helpful I am sure.
As my Mums main carer what I would love is my Brother to give me a regular day off/ weekend off to recharge my batteries where he does everything and pays attention to what she needs, not leaving me worrying he doesn’t know what to do.
Also supporting by arranging additional help, all the day to day things is very useful. Sometimes all you want to do is sleep but it very difficult to turn off.
Try and give your Dad time to be himself, to do something without worry?
Are you in touch with your local hospice, mine has been great in offering support.
hi Janice so sorry you had to be here but you will get help here we’re all have been through it or going through it
Just be there for both of them deal with things as they arise not many doctors understand this disease I felt totally alone with it all for 10 years
Treat the symptoms as they arise if mum struggles to eat and drink you may need a thickener for the drinks and if you have a NutriBullet put food in there for her add gravy or liquid as necessary
My husband loved cake I would add some water or cream or yougart to mix to a paste like consistency just in a bowl so he could have it just try different things
Dad would probably need to get out for a couple of hours to recharge
Get all the help you can for them
If necessary you have to be a bit forceful as PSP people sometimes look so well and the disease is very underestimated by professionals argue with them if you have to I did !
Good luck with it all hugs to you
Come on here and ask if you need any advice we unfortunately know it all x
thank you for your reply and the tips with the food! Yes she has the thickener and I’ve just bought a food processor this weekend also. I do agree that many of the GPS do not understand the disease, which makes things difficult sometimes to know where to turn! Thanks again for your message ❤️
Janice99, I am so sorry to learn of & fully understand your difficulties having looked after my wife (PSP). As you are in the UK, if you haven't already done so, please register with the PSP Association (pspassociation.org.uk). They can point you to services for help in your area. They have support groups around the UK and are starting to introduce Link Volunteers (with experience) to give 1:1 support, in your home where possible or over the phone. All my very best wishes 🙏
I agree with the previous reply, please contact PSPA who will be able to point you in the right direction.
Also please contact your Mum's GP and arrange for the District Nurses to visit, if they haven't already been involved. They will liase with Occupational Therapy who both will advise and supply equipment for your mum from the NHS.
We were blessed to be supported by a wonderful GP, District Nurses and a team of carers from a local agency and having made alterations to our house were ae to keep my husband at home.
But, I must stress, that no matter how much your Dad wants to, he won't be able to manage alone. Even with carers coming in, there were times when I came close to burn out.
Take care of them both, there will come a time when your Dad will need to be her husband and not her carer.
thank you for taking the time to respond, we did have nurses come out, they said they would visit every 3-4 months but nothing for around 10 months so will have to definitely chase that up again! Thank you ❤️
Hi Janice sorry about your mum I would get in touch with your doctor to get someone from OT to come and assess your mum. Do you have a Parkinson’s nurse? My husband has CBD but is involved with a Parkinson’s nurse who I can email or phone. Also I’m under the Border Carers who look after me. Hope you get help soon 💜
In our case, we decided that the patient should stay at home, be cared for at all times. The "red lines" were that the situation did not affect the physical and mental health of the caregivers or that the treatment of the different symptoms exceeded the capacity or the means we could handle at home. In our case, the result was that from the patient's last admission to the hospital until death, no more than 24 hours had elapsed. I think we did a good job satisfactory to the patient.
In all this approach there are critical points:
1) The experience, knowledge and ability of the different caregivers that must be selected during the process. The information found in this Chat helps to know the characteristics of this disease.
2) Being able to face the economic cost that derives from this type of organization and which in our case was around 3,000 to 4,000 euros/month.
3) The caregiver who acts as the "manager" of the system and sees that everything is up and running properly. His dedication will be continuous and intense and despite this, he must have breaks and daily distractions.
4) Balancing the physical and psychological cost for caregivers. Everyone, and this includes the "manager" caregiver and family members, should have a vacation where they change scenery. At least 10 days, twice a year.
By internal mail of this chat I sent you some additional information.
Make sure your Dad is getting all the help he needs.
Help fight all the battles with the professionals, nobody out there has heard of PSP, much less know what to do.
Practical help, which you are doing, make sure he gets time out on his own.
Then the things that nobody gets, just be with him, take around a take away dinner and a bottle (or 3). It is extremely lonely caring for a loved one and frightening, being on your own.
I am sure you are naturally doing everything I have said, thinking about it, give him the details of this site, I would not have survived without the help on here, when my husband was on his PSP journey.
Most of all, just let both of them know you love them and are with them every step of the way.
GREAT THAT YOU FOUND US JANICE! Welcome to an unwelcome situation. I am now 81, male, diagnosed 5 years ago, and had to learn about it all the hard way, and all the pitfalls, things do, how to help yourself, etc. Will send you a 3-A4 page write up about my discoveries, advice etc. Cant put it here as too large , so pls snd me ur email address, if you'd like it. Very best wishes to you all, and note PSP = Please Stay Positive! TimbowPSP
Are you able to contact some of their friends to visit/go to the pub? Not necessarily constantly, it can be tiring. As Mum moved first to independent living then nursing homes she wouldn't make contact with new people as it took her too long to explain PSP and/or would make incorrect assumptions about her mental capacity based on speech difficulties. However, with family and friends she's happy to see them as they know her and see beyond her PSP even if she can barely talk anymore. That might help your Dad with some respite and your Mum feel she's who she was for a few hours.
Plus all the other excellent advice from the other replies here. Good luck!
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Can anyone offer me advice on how to do my bit when I live a long way away from my mum?
Not sure I can cope anymore
How does a hospice help with someone with PSP? 
How much worse can/will it get :( 
