The day started 3 hours ago

[Helen119]

So this day has begun, C is fed up already wants a pillow over his face, me to feed him loads of pills, then asked for a chocolate bar, how screwed up is that.

I feel I would willing do this for him, but don't want the consequences.

I will sit here awaiting his calls, coz I can't be bothered to do anything else, my house used to be clean and tidy, but doesn't feel like it anymore and I can't be bothered.

I'm sinking, I can't pick myself up like I used to be able to, why, I just want to be a "normal" person, go back to work, have some money to spend, feel comfortable.

I feel so guilty for feeling like this, he C must feel much worse.

The day will pass whatever it brings, I know I will get through it I always do.

But I'm just fed up with it all.

[Hidden]

Don't feel guilty about how you feel. We all wish for better than this. You'll get through the day. Do you have a friend nearby that could pop in for a cuppa, lift your spirits?

[Escada29]

I feel your pain its all truly horrid xxxx

[Heady]

I agree, don't feel guilty with any of your thoughts. We all have been there. Remember, PSP affects two people, not just the sufferer. You are just as much a victim of this evil disease as C is. Be gentle with yourself.

Lots of love

Anne

[Satt2015]

Helen, you echo what and how I've often felt and no doubt, how we've all felt?! Remind me have you got chc? Carers? You need help, fast!! You need respite!! You need more hugs!! But your right darling, you'll get through this because we always do, somehow!! I won't tell you not to feel guilty because we can't help that, we are human! I feel guilty all the bloody time!! X

[Helen119 in reply to Satt2015]

No help yet, hopefully respite later in the year. I am seriously thinking about more help but don't want a load of strange people in my house, I used to be a carer so perhaps that's why, but I do know I will have to in the end.

Thank you for replying, I'm sure I will get through this just a bit stuck at the moment

Hxxx

[Suebatt in reply to Helen119]

Hi Helen

As you know with care stipulate that you need back to back carers so they get used to C

I tools them from the start as they don't know the illness and you'll need regulars all the time .

Try get the help now as I found it helped from the beginning and defo for respite

I hope your feeling a bit better and this site does it helps as I read through them all and it's all good advice

Take care

Sue x

[Katiebow in reply to Helen119]

Don't know how I would cope without carers coming in, I do a bit of clearing,washing and acpotter around the garden whilst he is being showered and dressed. If it is a nice carer I sit and have a drink and coffee as I will have made his bed up. If I'm not so keen I skip the social bit and let them do the bed. Have recently started evening calls as I was low on patience by evening time and poor Ben suffered as a consequence. I'm used to the disruption now and it all seems perfectly normal. xxxx

[Satt2015 in reply to Helen119]

I appreciate you don't want strangers in but needs musts and all that..... x

[Julieandrog in reply to Helen119]

Hi Helen

You have to get rock bottom before you start to become a little more focused on yourself as the caregiver or the whole pack of cards collapses. There are good companies out there and you must know that packages can be tailored to your needs. I choose to have three hour blocks daily , no good someone rocking in at nine each day ,our days could start at silly o'clock! You will get used to people coming in but set the professional boundaries they are guests in your home, my mantra to anyone new coming in is ' if I have a problem with how you care for Rog you will be the first to know!' Mutual respect.

If not already refer yourselves to adult services, you will be entitled to three hours a week free carers leave immediately , then when things worsen you will not be crisis managing.

No comfort I know but we are all with you, have walked in those brutal steps but get help now!

Ps drink wine !

Julie X

[Brenive]

I also agree with all the replys you had so far , Try to keep smiling, and have a little rant, come to think of it , Go for it and have a lovley big rant....hope you soon feel better...Brenda xx

[Katiebow]

Bring on the right to die when the sufferer no longer wants to carry on, I know many people won't agree with this but Ben would like that option when the time comes that he no longer wants to carry on. I only hope that the new Tory manifesto won't make people feel they want to end their life because they will have to totally fun their care, even within their own home.!

K xxx

[Helen119 in reply to Katiebow]

I agree Katie bring it on xxx

[Marie_14 in reply to Katiebow]

Katie I agree with you but parliament voted on this last year or the one before and decided we would all kill our loved ones off! They all know better than we or our loved ones do? So the vote didn't go the way most people would have liked. Maybe we should demand a Referendum?

As you say if the Tories win the election people will have to totally fund home care! I honestly didn't think any political party would ever do that. It is so cruel? I just thought thank God my husband died when he did. Which then made me feel so guilty for thinking such a thing as he only died in February and I am still grieving. However it will happen to all of us if we need help in the future? It made me cry when I heard it announced on TV. It doesn't have to happen though?

I kept thinking of all the people on this site and what the future would hold for them. Unless you are extremly wealthy or very poor they will fleece you! Oh and don't dare get old!! No guesses for the way I will vote. It is making me feel ill just thinking that any political party could do such a thing. This is the 5th richest country in the World for goodness sake. How can the most ill people be treated this way? Nobody decides to have this awful illness or any of the other neurological conditions which cause great distress as we all know?

Katie I wish I could give you a great big hug you really do need help and love. I can only send you hugs and love this way but you need someone to give you a real hug.

I know how you feel about people coming into the house but sadly you need that help or you will be ill too. Where then will your husband be? We have all had to face this you know?

Please be sensible and swallow your pride. We all need help because this could frankly make you very ill. You know that though as you are a clever woman. You are just feeling overwhelmed and it will get worse unless you get help. So please listen to the people on this site who know what you are going through and just want to support you.

Lots of love and hugs to you. On Monday get help! You have two votes in your home too. Ask your council for postal votes because none of us know what the next day will bring with this condition? Or take a break and vote, and get a Proxy vote for your husband on Monday when you ring the council. You will ring Katie because we don't want to lose you. We can all use our vote to help each other or we can shrug and turn our backs on each other?

Sorry for the politics as I know there are people who support every party on here but this is truly disgusting. So I am afraid I have to speak my mind. Hope I haven't offended anyone but I do hope I have made some people think about their friends on here, and yes selfishly about themselves too and what the future will bring into their lives.

Love to you and remember you have lots of friends on here? Anytime you feel down we are here and you can message me anytime Katie.

Marie x

[Marie_14 in reply to Marie_14]

HELEN the essay I sent was meant for you!!! Some of it applies to Katie too however! What am I like? Amanda, Anne, and Kevin kept me sane but they are too quiet now! I blame them!! 😂

Marie x

[Helen119 in reply to Marie_14]

Thank you Marie I will look into getting help next week.

Hxxxx

[Marie_14 in reply to Helen119]

Helen

I am so glad about that. You really need it. Try to get some respite too? You are certainly entitled to it. Take care and rest every minute you can.

Love to you.

Marie x

[doglington]

Agree with all comments.

I know exactly how it feels. There is nothing to say that can make it ok.

Big hug from Jean xx

[Yvonneandgeorge]

I agree as well, if your dog is suffering they put them to sleep, people should be able to make that choice xxxx

[D0ttieL0ttie]

Please ask for help. Contact your GP, PSP help line, your local carers group.

It is so hard when we are caring for our own without any help or support.

I went days without sleep in August last year which was the lowest I'd ever been.

It took months to get support but now G goes to day care 3 times a week.

Do you have Continuing Health Care?

If not please speak to your GP about this and the PSP help-line.

My heart goes out to you. I hope you find the strength to make a few phone calls.

Take Care

Pam x

[Jessicajane66]

Oh Helen, my heart goes out to you.

Right now your needs are as great (albeit different) from C's.

Please take steps to help yourself. Your own health (+ sanity) are at risk.

A complete break would help enormously. Is there some way you could acheive this.?

Don't be afraid to ask for help Helen. You most certainly deserve it.

Take care of yourself first, otherwise you will not be able to care for C.

Big hug

Jess

[Helen119 in reply to Jessicajane66]

Thank you I will look into getting more help next week, am trying to book respite at the hospice fingers crossed

Hxx

[laila123]

i to was in this situation many times i would put a song on and sit and talk ino one understands what it is like to be in this place but you are an amising person to stay with him and give love i wish near you to chat give yo comfort

[ciilat]

You really must get all the help you can for your own sanity.I was reluctant to get carers in but after B last fall and being in hospital for several weeks they adviced carers morning and evening. It is a bit of a life line. I can have a bath in the evening without being summoned and can get the dog out in the morning.You soon get used to people in and out.

You should also get sitting service in place just to have a few hours to youtself makes all the difference.

I am sorry to hear you are having such a bad time I hope you have some good friends or relatives you can off load on.

Hope your day gets better C xx

[Marie_14]

Helen the post to Katie was meant for you! Although Katie it really applies to you too as you are going through your own hell? I meant to send you a post too a couple of days ago and that was on my mind and ended up removing Helen's name and putting your name on it Katie! Some of it will be bewildering to you Katie?!😀 I actually think I am cracking up! God forbid we ever get ill?

Marie x

[Helen119]

Thank you everyone for your replies and advice. I will try looking into getting more help next week and some respite time with the hospice

Love and hugs back to you all

Hxx

[Cuttercat]

Agree with so many replies. My days are the same. Suspended. But Charles is in worse shape. PSP patients just can't tell us how they are. They just sit there and they are demanding without saying a word. I feel guilty as well but I rail against the disease that has ruined our lives.

Cuttercat

[Helen119 in reply to Cuttercat]

Hugs to you

Hxxx

[doglington in reply to Cuttercat]

I'm with you, Cuttercat.

Not feeling too great today so I'm more intolerant, He becomes more stubborn. Know what's happening but can't help re-acting.

Its familiar to all, I guess but not feeling good.

I want to cry all the time when I remember how he was.

big hug from Jean xx

[Cuttercat in reply to doglington]

I cry all the time, all the time.

Hugs.

Cuttercat

[doglington in reply to Cuttercat]

me too. I can't believe how many tears. - -

xxx

[Tillyhugs]

We all feel down at times. There is always housework to be done. Try not to worry take care of yourself xxx

[Jafarrar]

Thanks for sharing, you said everything I've been thinking my husband has CBD. He has not walked for two yrs. His P GP talked to me about hospice care I don't know how it would work? I also like you had a clean house but now I just can't seem to do it every day I say I'm going to clean and something comes up he has a nurse that comes and a PT comeing . Some days I don't get my hair fixed or makeup on . I just can't get it together anymore. Then comes the quilt. Also like you I didn't want all these people come to my home. One day at a time and Gods grace is the thing that gets me through. Love you all I don't feel so alone since I found this group on line. God Bless You All and your Loved Ones.