Don't know what to do?

[twinies]

Hi everyone, my dilemma is my morher cares for my dad who has psp, although she does a great job with medication food hygiene etc she doesn't have the patience for the mood swings and awkwardness psp brings. She gets extremely angry with him shouting and cursing at him, but also is very heavy handed when lifting him into bed etc. Does anyone have advice? x

[Kevin_1]

Hi twinies

Can you get nursing support in?

If you are in the UK speak to his G.P. All you need to say is Mum's finding it too much to cope with on her own and ask for a referral for Continuing Health Care. Continuing Health Care is free. You would be able to have carers coming in and doing some of the heavier work.

Avoid referrals to Social Services for an assessment for Care at this stage. The Social Services Care is means tested and the NHS one is not.

Do come back if you want to know more. Thee are a lot of folk here with ++ experience.

Best of luck

Kevin

[abirke in reply to Kevin_1]

Amen K1

[twinies in reply to Kevin_1]

Thank you Kevin. I'm in Ireland. We help a lot during the day but can't be there at night time. I wil take your advice. Thanks again xxx

[Kevin_1 in reply to twinies]

Do you have District Nurses who could come out?

(Sorry to waste your time with UK info)

Heady says it all really.

I nearly cracked trying to do too much before we got help in... And its still tough.

I am ordinarily a calm caring person used to dealing with ++ stress and personal and very real threats in my professional life (now retired).

But caring was turning me into an unreasonable monster, before I got the help I needed.

Wishing you and yours the best

Kevin

[Heady]

Are you one of my children???? This is me exactly!

My advise, get her help NOW,!!! Caring for someone with PSP is a 24/7 Impossible job. It can not be done by just one person. You haven't said what stage your Father is, but your Mum needs Carers coming in, to help with the day to day tasks of caring. She needs breaks, I.e. A Carer that comes and sits with you Dad for a few hours, so she can go out, get her hair done, shop, learn to breath again and the occasional respite care, where your Dad goes into a home for a week. If you can do some of this, great, but I know that's not always possible. What you can do, is be there for your Mum, a shoulder to cry on, someone to talk to, open the wine, or box of chocolates, just provide some normality into their lives.

PSP is an evil disease, as it effects not just the sufferer, but the Carer as well. Don't be frightened of stepping on toes, phone her GP, tell him/her what is going on. Are you in the UK? If so, contact the PSPA, they will be able to send you booklets, so you can fully understand the illness, they will be able to talk to your Mum to advise her how to get the much needed help. Could be, your Mum needs some counselling, it's extremely hard coming to terms with the horrors of PSP.

Most of all, put your arms around her, cuddle her, tell you love her and understand. Give her the details of this site, so she can come on here, rant and rave to folk who know exactly what she is going through.

PSP is not easy for anyone, you included. Use this site to vent your feelings, it does help talking to people who have actually heard of the damn disease and know what you are going through.

Sending big hug and lots of love

Heady

[twinies in reply to Heady]

Thank you for your advice, i'm not in uk i'm in Ireland. My dad is in year 7 very advanced stages. I do help a lot and so does my sister but we can't be there at night time. I will take your advice and let you know. Xxx

[Heady in reply to twinies]

Can you see if there is any night time Carers, or does your Dad sleep OK?

Lots of love

Heady

[abirke in reply to Heady]

So good heady Amen!!!

[abirke]

She needs counseling. she does not have to go this alone....she does not have to blame anything but PSP...she is not at fault...which might actually bring on the heavy handedness and shouting....He is not at fault even his moods...and by the way, he can get meds for those mood swings...so can she....time to talk to the doc, to mom and to dad...keeping silent is as bad as shouting...Your first step to help is right here . Your second step is the doctors office!

Go Now! We'll be here when you get back...go...now

AVB

[twinies in reply to abirke]

Thank you the advice means a lot xx

[abirke in reply to twinies]

Are you there yet?

[Hidden]

Seven years can certainly take its toll on patient and caretaker. We are in our third year and we are constantly at one another. I hate myself for my behavior is so upsetting to us both...he no longer knows me as his wife and after 55 years I cannot accept his unloving ways. I have tried therapy but the truth is he no longer loves me or even likes me.

I feel for your mother. The road ahead is do bleak I try to make something good happen as often as possible. He is still mobile and so I feel blessed. All I pray for is to maintain my health so I can care for him. I am sure you do all you can for your parents.

Blessings from NYC, USA

[GonnaMissDaddy in reply to Hidden]

God bless you Noteasy. I'm in VA, Va beach area, close to NC's OBX. I've visited your FINE city several times and LOVE it! My Dad has PSP, has had it for about 10 years. Daddy knows who I am but he can't even stand or take a step. He's went through many stages, none more pronounced than in the last year or two. Anyway, reading your post made me wonder... maybe it's psp that doesn't love or like you because your husband, the REAL him, is bound to love you even more than ever but it must be so hard for you when that's no longer apparent. Please don't hate yourself. You're just being normal and reacting to a heinous brutal situation. I feel like I went into the rabbit hole a year ago when I moved back home to help his wife take care of my dad. It's consumed my life and there's nothing I'd rather be doing BUT!! I knew it'd be difficult but had NO idea just HOW difficult. You'll be in my prayers. ~Sheila p.s. I hope you have helpers, others who help you take care of your husband?