Dad newly diagnosed with PSP

[TINKERBATES]

Hi,

After a very long road we just found out yesterday my dad has PSP. We haven't even had the meeting with the consultant yet so all I know about it is what I've read online.

I have been caring for my dad for 2 years, but he's only really needed me 2-3 times a week to help with shopping/housework etc. Then the last 6-8 weeks things have got much worse where he is falling 3-4 times a day, every day.

We took him to a&e last Thursday and as I am 8.5 months pregnant they realised I cannot currently look after him and so have kept him in.

I have a 3 year old and will be having a caesarean with my second baby on Wednesday. We are due a meeting with social services about his ongoing care at some point in the next few weeks. It seems likely that for now he will be in respite care until we can make some longer term decisions.

I just feel clueless. They want him to go into residential care, I don't feel like he's at that stage yet. Currently he's in his own 3 bed semi, but 10 miles away from me. Right now my feeling is he would be ok in sheltered accommodation in my area so I can help him out every day. Yes he falls a lot and speech is slurred but right now he's not too bad with other things. Am I naive to think that for now sheltered would be ok if he has all the right aides in place? Or would I be putting him in a dangerous situation?

I don't want to be the person who puts her dad in care, but I'm about to have 2 small children, I need to go back to work after maternity as we just can't afford to live on my partners wage. Me and my dad both agreed that when it gets 'too much' we could look again at residential care. But how long is it likely to be that I can manage to look after him with my other responsibilities, if at all?

Does anyone know any other care options? Such as can I do some and then have carers come in too? Such a fine line between getting enough care and getting too much care as I feel whipping his independence away too soon would kill him off.

My head is all over the place, as is my dads. We are both just at the heartbroken and overwhelmed phase, any advice would be hugely appreciated xx

[NannaB]

Oh dear, how difficult for you. You won't be able to do anything for your dad immediately following a Caesarian and then you have to get to know your baby and get the baby into some kind of routine. If your dad goes into sheltered accommodation he will have to have someone keeping an eye on him regularly so make sure he goes into the right sort of accommodation. Some will only call on the resident if they ring for help but if he can't ring, he could be lying on the floor for some time. Do you have any brothers or sisters who can help?

If you don't know when he will see the consultant and you will be out of action from Wednesday I think I would contact social services. They managed to get my husband into respite when I hurt my back. If he went somewhere while you were recovering from the birth, more permanent measures could be sorted out when you have recovered. I'm presuming you are in the UK but if not, post where you are and someone will give you suggestions.

I do hope all goes well for Wednesday and your beautiful new baby will take away some of the sadness you feel about your dad.

Take care.

X

[TINKERBATES in reply to NannaB]

Thank you so much for your kind words. I think the new baby will lift both mine and my Dads spirits, he's certainly excited to meet her.

I do have siblings but honestly they're useless and won't help, even though they're much older than me and their children have all flown the nest, anyway that's another story!

The hospital have already asked SS to get in touch and have said my dad won't be going anywhere until I'm in a position to speak with them to discuss respite so hopefully that is the next step. I know he's safe in hospital but it's not ideal for him to be there for 6 weeks.

The decisions ahead seem so overwhelming xx

[york]

I think your dad being in hospital is the best place for now, he will be taken care of and fed without you worrying you have enough on your plate so concentrate on yourself and your family.

I don't know where you are locate?

speak to social services and ask for fast track carers, and an emergency ot to see what exactly is required they will organise walking aids, stair lifts / bath shower aids they help tremendously they prefer to keep people in their homes rather than residential care.

This can be done whilst your dad is in hospital and put in place before he comes out.

If at a later stage residential care is required you will have more time to look into the right one.

Good luck and take care and congratulations for Wednesday take care

[TINKERBATES in reply to york]

Thank you. I'm in Manchester, UK. We should be seeing social services soon (though likely not for a week or so now due to baby). I completely agree that I think having various aides at home would help a lot l, that combined with my help once back on my feet really would be enough for now I think.

As you say, it's a good idea to have time to really look into homes rather than having to make a rush decision.

[neemwalla]

I cannot offer any help or suggestions but my heart bleeds for the two of you. Sending you peace, light, love and happiness.

Sidney

[myjual7]

As a PSP sufferer with a daughter in your position withtwo young children I went into emergency respite after an operation on my toe pu one leg in plaster. Unfortunately the hospital didn't know about PSP and most people in the respite care home knew nothing about the condition so neither stay was pleasant. Much better at home with carers though my place is booked in a local care home,when it is available I shall move to ensure what time I have left is comfortable for me and worry free for the family.

[easterncedar in reply to myjual7]

Well done, myjual. Glad you have a good plan for yourself. Best, Ec

[showaddy]

I don't know which part of the country you live - but in Kirklees we have 'extra care homes' for the disabled. They look wonderful from the website and are only for people who need the help of carers on site and restaurant facilities even. You access them via your local gateway to care who then recommend the patients to social services. It may provide a halfway home to keep him safe and have the knowledge there is someone there 24 hours a day if he needs help. Staying out of residential care for as long as he can will help both you and your dad. Thinking of you and hope the above helps. Take care of yourself and best wishes for the babys imminent arrival. Love Pauline xx

[showaddy in reply to showaddy]

Just looked up the details - Its run by Pinnacle PSG - tel [phone].

[TINKERBATES in reply to showaddy]

Yes we have similar round here, though unfortunately can only apply through a housing association which can obviously take some considerable time. They do look fantastic though and I definitely think would be a fantastic option for my dad.

Thank you

[Tokki]

Firstly, every good wish for the safe delivery of your baby.

You will find a great deal of information on this site and if you haven't already done so, contact the PSPA as they can provide lots of literature to help you but also some of the professionals who may only have a vague knowledge of this disease.

[Amilazy]

You need to concentrate on your new (about to be) born, and your 3 yr old. Your dad is safe at present.

I assume you are in the UK, if not sorry most of what I say will not apply. As Tokki says contact PSPA get the information on PSP, the handbook is great for you and your dad giving pointers on what to do and who to get help from. Also get their information cards which you can hand out to everyone especially the so called professionals.

The OT is essential to check his house for adaptations or advice on what aids which can help. Get your dad to contact his GP to discuss PSP and if they do not know it give them the PSPA cards so they can arrange District nurse contact.

He needs to get his benefits sorted, if under 65 get PIP if over 65 it is attendance allowance. If he stays at home and you do things for him for over 35 hrs a week you may be able to claim Carers Allowance. The local Age Concern or CAB will be able to help. If he is married or single it is essential that he gets Power of Attorney both finance and health so either you or his wife can manage his finances when (not if) PSP robs him of his signature.

Much more but you have a lot on your plate at present enjoy your new child. Best wishes Tim

[TINKERBATES in reply to Amilazy]

Thank you so much for the information. I will definitely contact them.

So much to learn and navigate, I guess all we can do is take one day at a time

[MaiSalah]

Dear TINKERBATES.. i wonder how you handled the 3/4 times falling of your dad while you are pregnant.. i wasnt pregnant and had difficult time to lift him of the floor and sometime i was falling with him.. i definitely recommend you with home care as this illness is rapidly progressive as you read.. you never know what next days would bring you.. be strong.. my heart is with you hoping that days will give you patience.. you will need it dear.. best of luck ..MAI xx

[Noella21]

I would wait till the parkinsons meds have a chance to work before making an drastic changes. Can you can him some temporary help or someone to check in on during the day until than? You may find he is much better if the meds work for him. You may need to make some adaptations to home. Remove rugs rails in bathroom etc. Yor occupational therapist can do an assessment of things you can do to avoid falls. Major change will make his stress level go up and that will make his ability to function go down. God bless you and give you strength as you make decisions what ever adjustents you need. Hugs and welcome to the Parkinsons family. Noella and Ron.

[Marg52]

Hi yes you can have someone come in and do a few things and you can do the rest.

[Grandmadippy]

hi l have been assisted and helped by my local nhs neuro community team , they have physio, speech therapy, rehabilitation. Also they provide specialised equipment and assess his needs etc .

I should try to google your local community nhs foundation trust or the doctors surgery for a contact number.

Also if you contact the PSP association they will send you information pamphlets describing the condition and expectations for your GP, They also advise asking your health centre, GP practice to assign you a designated doctor.

Hope this helpful.

I know it’s difficult and an awful disease and he will have his down days , try to keep him motivated, out and about with friends, social activities etc Stay positive.