HELLO

[GovJ]

Hello everyone. I hope your all having a good Easter. 

I've been looking at a few posts to try and get some ideas of what to do next. 

I would think my father has had PSP fir some years, but was missing diagnosed fir Stoke. 

He eventually saw a neurologist late last year, PSP.

My father is now bed bound, he can no longer support himself. 

He is aged 86 my mother is 84,and disabled. 

My sister is their main carer, since she retired 5years ago.  As a family, we all take turns to do our shift and stay the night with our parents. 

Over the last few weeks dad had become very aggressive and abusive to my sisters and I. 

He keeps striking out St the evening carers. Last night, he tried to punch and choke my sister (5 girls altogether) 

We are all so upset, we don't know where to turn. 

He is assigned to a hospice. I only joined forum recently, and I have learned so much. It just trying to get my family on board.. 

I am afraid to say, but I know that you will understand. Dad has become put of control. His needs are beyond what my sisters and I can provide. 

Please help. I am going to do my shift soon. And honestly, I am scared. Just in case he starts. 

Love you all

[GovJ]

O meant to say dad is Not assigned to a hospice. Sorry 

[vlh4444]

Hello GovJ I am so sorry you have needed to join this site but welcome.  Here you will find lots of support, answers to your questions and an outlet for your frustration and sadness.  

It sounds as though you and your sisters have been doing a marvellous job looking after both your parents but that now you need HELP!  Don't delay, get your sisters on board and contact your father's GP.  Ask him/her to refer you to Social Services and your local hospice.  If the GP is not helpful or understanding you can self refer to Social Services - just Google them for a contact number.  You will need a referral to the hospice but you can always speak to them in advance and explain your situation.  Remember that hospices are not just for end of life care and can help you through what you should do to get help.  They will also have good advice about how to handle your father's outbursts, which are not uncommon with PSP.  I have had to deal with similar challenges at times with my husband - all borne out of extreme frustration, fear and confusion and very out of character compared with his old self.

I hope your 'shift' goes well and I'm sure your father is very happy to see you despite his uncontrolled outbursts which probably frighten him as much as they do you but do get some help as soon as you can.

Vicki x

[GovJ in reply to vlh4444]

Hi Vicki 

I read you reply with tears in my eyes. I helps to have a forum that truly understand what we are going through. 

Such a lovely reply. I will share this with my family. 

I just want to help my poor dad. 

Thank you so much 

[Doglinton]

How heartbreaking. You need to get all the support you can. Contact PSP Assoc. You should have a local neurological team who will refer you to the hospice. Where are you ? I think help varies according to P.Code.

I have no experience of personality change. [ my husband has PSP and is 83 ] but I know it is common and our neurologist always asks if he gets aggressive so it must be quite common.

Keep in touch and let us know. 

love, Jean x

[GovJ in reply to Doglinton]

Hi Jean

Thank you for you kind reply.

I have recently been in contact with the PSP Assoc. She is away and will call me on Thursday. 

I am in the rm13  area..we have a follow up appointment with neurologist in April. I will keep you all updated. Thank you for taking the time to respond. Very much appreciated.

Love, Jacqui

[abirke]

I just made a comment to another who is going through this...get some medical help! Your dad's brain is not understanding or misfiring in the wrong places.  It's nuerological but /and antidepressants help.  For you family's safety see shat your dr can do.  I know how hard this is for you but please remember...it's not his fault...it's not your fault ...its PSPs fault/! Lets not let this go another 5 weeks!

I am glad you found this site....share it with your sisters, difft perspectives would be rather interesting!   My sympathies go out to yourr mom, she is at such a fragile age anyway and then to be disabled , with a disabled husband it's not fair....Its' PSP!

I hope you get relief soon from his aggressiveness.

AVB 

[GovJ in reply to abirke]

Hi AVB

Thank you for taking the time to reply. I am now on my shift. Dad very quiet and slept. The carers are due to arrive within the next hour. That's if they turn up on time! 

Hopefully it will be OK. 

Poor mum is very worried and cannot understand why he is behaving this way. She has been very upset. 

I have shared your comments with my sister today. We are call GP tomorrow. 

Thank you once again for you practical advice and support 

Jacqui 

[abirke in reply to GovJ]

Your mother may use a mild sedative as well. If she is not fully responsible for your dads upkeep  and her safety would not be compromised (due to drug on drug or drug making her too loopy to take care of dad), then something to help her cope might be something you want to talk to doc about as well......I'm not a drug pusher....but soemtimes you just gotta do what you gotta do!

Goodluck and Godspeed

AVB

[GovJ in reply to abirke]

Hi

Yes she probably could do with a sedative. We will discuss with her GP

Thank you 

[NannaB]

Hello Govj, the others have said what I would have but I have no experience of aggression by my husband although did get plenty from my mum with Altzheimers. The sooner you get professional help the better it will be for all of you. Your poor mum.  It must be heartbreaking to see her husband deteriorate but not be able to help. It sounds as if you all need a break.

I hope you find the help you need.

X

[GovJ in reply to NannaB]

Hi NannaB

We do all need a break. Hopefully when we get into action. We will get one. It'll be good for dad too, although he won't want to go! 

Thank you for your support 

Jacqui 

[Heady]

Hi Jacqui,  sorry you have had to join the best site on the net!  This is the place that will try and steer you in the right direction.  We are all Carers,like me or sufferers of PSP!

As to your problem,  you MUST get your GP involved NOW!!!  Have you got Power of attorney for your Dad?  Think you need it quick.  I am sure you want to look after your Dad as long as is possible, but there does come a time, when other people's feelings and lives have to play a part in the decision.  Your Mum is very vulnerable, with your Dad being aggressive, it would be a shame, if she ended up going into a home, because of your father.  You can only do your best, sounds as if you and your sisters have done that in spades!!!

Being frightened of the person you have to care for, is not a good starting point, it's hard enough to do, without that!!!  I hope you can sort it out soon.

Lots of love

Heady

[GovJ in reply to Heady]

Hi Heady 

Thank you for taking the time to reply. Yes mum Is vulnerable and the points that you bring up Re mum having to go onto a home are topics of our discussions. We do not have power of attorney either. I'm afraid we've been overwhelmed with everything with dad that our own lives have been topsy-turvy too. I do broach the subject with my sister, who is their main carer. We do have to act and fast. Yes we do want to look after dad as long as we possibly can. 

I am very glad that I joined this  forum though. I have gained so much advice too. We have a lot to get on with in a very short space of time. I think my sister has been told that maybe she was too late for power of attorney for dad. Shes been doing an amazing job but it all has to be constructive now. 

Thanks a lot 

Jacqui 

[Katiebow]

Terrible predicament to be in with your mum and dad, you certainly do need to contact your gp or social services to get help in place. It is tricky knowing what is out there and sometimes you have to dig deep to get the information you need. Ben, my husband hasn't shown any aggression towards me or others but you never know if it nay happen in the future. This site helps to put things into perspective and gives great advice as yo what help may be there for you. Thankyou to everyone who contributes and helps to lessen the load of this horrible disease. K xxxx

[GovJ in reply to Katiebow]

Hi

Well said. It has become a great source of information and comfort. 

Dad seems to have these outbreaks when the evening carers arrive. Unfortunately, they are inconsistent with staffing so people he hasn't seen may come on the evening shift. 

We don't know what triggers him off. But he won't let them change in his pj's or check to see whether he is dry. Then he chucks his tabs on the floor. Really not like my dad at all. 

When it was my shift yesterday. Dad was incredibly sleepy. He could just about drink the tea I was giving him. I changed his pad  and put on pj's, gave him his meds. He went straight off to sleep. 

The carers where about an hour late. I just told them it's OK I have done it all. I was lucky last night, poor dad slept tight through the night. I just thought rather than gave him upset and wanting to fight the world, I would save myself the grief. On this occasion it went to plan. 

I haven't heard anything tonight from my other t sister, so he must be behaving tonight too. Bless his heart 

Thanks to all for you as device and support. You've been amazing 

Jacqui