New Diagnosis and Struggling

[Cazoliver]

Hi Everyone, my Dad was diagnosed last summer with PSP both my parents live with me and to be honest this is the hardest think we have ever dealt with, it is just heart breaking, my Mum has COPD and a Laryogtomey she isn't well herself but Dads condition means she often gets overlooked, Dad at the moment can be very cruel and just tells us to shut up or for Mum to just do things for him, his most recent idea is telling us he doesn't have a brain so therefore he can do what he wants to us this is both mentally and physically draining for both of us, we also feel very alone since the diagnosis we feel we have just been forgotten and left to deal with it, we don't want Dad to go in a home we promised him it would never happen but we are exhausted, we know Dad must be in whole world of his own and a scary one, I work full time from home currently and I am 39, I am now too scared to go out even for 2 hours because Mum and Dad seem to get in a state, I guess any help or advice would really be useful, xx

[Hidden]

It’s hard to deal with , my husband has had psp for 3 years and he can’t talk, is in a wheelchair and I do everything for him. He can’t be left alone at all. I have a baby monitor and I use that when I take a bath or go outside. You need to find some way that you get time for yourself. Praying for you and your family.

[Caro2132]

You need to get help as soon as you can. Where are you located ? Folks on this site are from all over the world and are full of advice and constructive information about care givers, financial help etc.

let us know and you will be pointed in the right direction.

Caroline

[Cazoliver in reply to Caro2132]

Hi Caroline we are in Nottinghamshire - I have just had a lovely chat with a lady from the hospice and they are looking at some day care for dad which would be such a relief on the days I have to go back to work xx

[doglington in reply to Cazoliver]

My husband loved his day at the hospice. Such a relief for me. They were so kind and loving. I hope it goes well for you. Love Jean xxx

[Mariawatters]

I have CBD so I don’t know a lot about PSP but you need to get help ASAP . I don’t know where you are in the world but if you tell your Doctor or your Dads doctor you aren’t coping they should start the ball rolling . My elderly mum who I have talked a lot about in this site had COPD and I was her carer for 19 years and she was like your father , she demanded my attention 24 hours a day . I couldn’t even go on holiday and she almost destroyed my sons wedding day . After a long battle with myself social services stepped in and she’s now in a care home . I now have a great relationship with her . She hasn’t changed but the professionals know how to cope . Maybe medication will help your dad I don’t know ? Please please look after yourself , you are too young to deal with all this .and your dad , if he wasn’t ill , wouldn’t want you living like this . You are amazing for trying to cope but get help .God bless you x

[Siobhanlo]

It sounds like he may have dementia associated with the PSP. Ask your doc is he can give you a psych referral. Antidepressants on their own did nothing for my mum but combines with an antipsychotic she feels much better and is a lot nicer.

[Dance1955]

So sorry about dad’s diagnosis you know from the outside looking in objectively it would make sense to get dad into a care facility However from the inside looking in I hear you I have looked after my husband for 5 years plus things are not going to get any better just worse the personality changes horribly

if I knew in the early days how bad things were going to get I think I would have done it sooner but i am now hanging out for a nursing home to take him

We are human beings and how long can we do this ? don’t feel guilty a about any choices you are forced to make think of yourselves sooner rather than later hugs to you 💕

[Tillytott54]

My mum was diagnosed just over a year ago and she lives with me too,I am 38 and a full time uni student . It is so difficult but you need to ask for some care support to relive some pressure.if your in the UK ask your doctor for an emergency package if care as it's now taking its toll on your health.ibhave got a baby monitor which helps if I'm taking half hour out in the garden or upstairs .we too have not really had any assistance in the last year until now .mum has multiple falls and 9/10 hurts herself ,I can't always stop them but the main thing to get your head around is you absolutely cannot so this alone ...i have worked in healthcare for 18 years and this is a very very cruel disease with multiple facets as is COPD.please request help from medical professionals even if it is 1 call a day from a carer for half hour ....trust me it does make a difference ,and once your in the system it is easier to get help. Good luck and keep breathing and doing what your doing ,I'm sure underneath the nastiness it is actually really appreciated .

[AJK2001]

Really feel for you having so much to deal with. I would suggest definitely getting in some help, whether this is a carer a couple of times a week to help with either or both of your parents or whether it is someone to sit with them for a couple of hours whilst you go out & have some me time. Having just a little bit of time to yourself can make a huge difference. You have to look after yourself, so you can look after your parents.I would also get yourself a carers assessment & look into what carers support there is locally, though these groups are not meeting face to face at the moment they are doing Zoom calls & the like & they offer carer support lines, as of course does the PSPA. Sometimes it just helps to talk to someone. I must admit I rather scoffed at these groups initially & they do vary, I found a local one for people caring for adults with long term health conditions & found it really helpful. Someone with MS or MND do face similar challenges & the group leader should be able to point you to services that can support you.

I would talk to your GP & explain the situation & how it is impacting you as well, make sure you are registered as a carer at the practice.

Have your parents applied for attendence allowance, it's non means tested, Age UK & other charities offer help in filling in the form, the thing to bear in mind is what they are like on their worst day.

Does your local Hospice run a day centre either one or both of your parents could go to? Have you looked at other day centres? My Mum was initially reluctant about the idea but tried it & it became the highlight of her week.

And finally keep in touch here, let us know how you get on & if you find things that help. You are doing a great job, keeping all those balls in the air xxx

[ARutzen]

Good morning,

My mom has CBD and I am 36 taking primary care of her. I have to tell you, yes you will feel alone and this is going to be a difficult journey for you and everyone involved. Please take a deep breath and try to find some help for your parents. I have a caregiver coming 3x a week right now, but as my Mom progresses, I am now preparing for her caregiver to start coming more. It does give me time to myself and you need help, so don’t be afraid to find it. I hope you can find some peace.

[Dorothysdaughter]

MyMom had PSP for 8 years before she passed. At first her husband did everything for her and refused help in the house. When he passed unexpectedly, my sisters and me hired a live in caregiver because there was no way my sister or Me could care you her like she needed. We couldn’t even lift her and our houses had stairs. It was not cheap, but cheaper and better than a nursing home and tax deductible in the US. She got the best care this way and was able to enjoy the years she had left. She also refused a home. We used a company called LifeForce. Saved our lives, all of us.

[easterncedar]

A counselor told me that everyone promises to keep their loved ones at home, but almost no one manages it all the way. Please keep in mind that you may need to lift that obligation from yourself for the wellbeing of all. It's not a failure or broken faith to have to adapt to a changed situation. You promised to a different person. The personality changes can be very cruel and it may not be his fault, and of course he may be frightened, but you really shouldn't feel you have to sacrifice your life to take care of him. It can be a long hard road. Take care of yourself.

[easterncedar]

sorry, my first message seems a bit cold, but I feel for you and all the young women in this thread who are taking care of parents. What heroes you are.

[LuisRodicioRodicio]

Hi Cazoliver!

I'm sorry PSP/CBD/ etc. and COPD have entered your family.

The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.

These kind of diseases manifests theyself in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the "trial and error" method, achieve a quality of life with interesting moments despite everything.

I am not a phisicyan.

During the 8,5 years in which we ere living with PSP I have been collecting our own experiences, symptoms and solutions and that of other members of the chat to offer some notes as a suggestion to PSP/CBD patients and caregivers. The mentioned notes are made with good will and with the best technical criteria that I could contribute, thinking above all in the support of the caregivers

Wishing the best for you and your family and if the notes-document with our experiences and our informations are of someone´s interest, do not hesitate to let me know to send it by the private mail of this chat.

Hug and luck.

Luis

[easterncedar]

How are things going? Just checking in.