Feeling !!!!

So sorry Yvonne - yes I am awake too, D snoring beside me. I can't say anything to help you because I feel as you do but at least we can feel it together!

Goodnight - hope you get some sleep.

V

You too xxxxx

I feel your pain as this is how I feel as well. My day is filled with laundry, feeding, caregivers coming and going and there schedule not mine and when I do see people they ask. "how is Jim?" How do you answer when every day is different and he is not getting better . I am finally saying well it won't improve. I get lonely for the life I built to make sure I wasn't sitting around and being a burden on my children and now it is fading into the background probably never to be revived again. I am so tired and sore from lifting and running to the sound of "help". When does it end for both. I can only maybe wish a massive heart attach and then he will be looked after by those who have the patience and strength to do it.

Oh dear life is sad, yes it is endless washing never had so much, well let's hope tommorow is better, seems like a lot of us are up late, more than likely to tired to sleep. X

We will wake up tomorrow to fight another day. Strengthened once again. We will carry on. Goodnight.

I know you have us, but some times we need more. If your husband is continually asking for help, maybe he and you need counseling . I would not hesitate to see a psych. if I thought my husband was in emotional termoil. He may not be able to articulate, but the counselor may be able to give you ways to relieve some of the emotional crap that seems to bury us. Don't get bogged down. Get some help. We are hear always but again don't be afraid to go elsewhere also .

Good night my PSP Sister,

AVB

I KNOW, BAD TIME FOR ME AS WELL YVONNE. DON'T KNOW WHAT TO DO

You are all wonderful women! I'm praying you all have a deep faith that sustains you. You all took the vows for better or for worse to heart. HE is always there for you...in your deepest hardships. I'm grateful you have this support group. My father has CBD. The moon is horrible on his health. I've programed full moons on my phone to help my mom. I know my dad's time with us is getting shorter. ..I see how hard this is for Mom, praying for all of you to have strength to fight through this for your loved ones. God Bless.

These replies are a reflection of what we all feel in one way or another. I did not think that Sandra who is eight years younger than me. and was always a tower of strength to our now grown up children would spend all her days confined to a hospital bed at home ( for the last 18 months) our daily routine governed by the arrival and departure of carers. Sandra's mental deterioration is the worst aspect for me although the loss of all her motor function must be much worse for her... A letter arrived yesterday advising me that my second total knee replacement is scheduled for the end of November .. involving another six weeks of live in care for Sandra. It is hard to think that far ahead. .....

Eleanor,there are only 2 days that you will not have ANY control over,yesterday and tomorrow ,best regards,.Rollie

Nice one Rollie!

Lots of love

Heady

Hi Heady,how are you love,Rollie

Yep, lots of empathy with you here but I've been too bitter to cry up to now. I had to call the ambulance again for Elizabeth yesterday morning. The last time I called them was midnight about 10 days back when she had been fighting for breath for a couple of hours. Yesterday she was salivating profusely and seemed to be choking. The medics attended and were here for an hour. They were of the opinion Elizabeth had got her oxycontin painkiller pill (prolonged release) stuck in her throat. She's on a shed load of other meds, most in liquid form. I crush the pills that are unavailable in suspension. I can't crush the oxycontin because of it's prolonged release coating. Sorry for your distress Yvonne, but that's not a lot of help to you. I'll be waking her up shortly for the start of another fun filled day. Oh deep deeeeeep joy.

Fond regards

Chris F

it's like being members of a club we all wish we didn't have to join .

there was a time when I would cry at the drop of a hat , now I don't know how to . I am sure one day the flood gates will open .

it's so cruel and not fair . my mum had a really severe stroke , I can remember one day she said ? How did this happen to me , I thought I had done everything right .

Another day John who never ever complains said What did I do to deserve this .

I have always told him " WE HAVE PARKINSONS "

have given John his breakfast. I managed to keep him switched on long enough for that and just finished mine . I can hear a voice whispering I need the commode . so get up and fight the good fight once more .See what today brings . not a good day yesterday .

the mental health nurse has been visiting and wants to start him on some thought processing Meds . he has tried Rivastigmine which gave him which gave him a tummy it's a wonder you couldn't all near . Then tried xMEMANTINE which knocked him out,

Trouble is I don't know if he would have been knocked out if he had not taken them catch 22.

has anyone else ever been prescribed these meds

Oh Yvonne, Its my birthday today and I am in tears for the same reason you are. Just another day of getting up to do breakfast, remember the time I would get a cup of tea in bed every morning before this horrible disease started. We both worked and were looking forward to a great retirement didnt happen. Feeling very sorry for myself this morning. Everything you say relates to a lot of us carers. My thoughts are with you and if we were together we would cry buckets and hug.xxxx

Taking you all for your kind replies, wish you all a good day today, at least the sun is shining. My husband takes citalopram he has no side effects from them, hope that helps, just put out a load of washing, George still in bed, I am sitting having a cup of tea. Yvonne xxxxxxxx

Yvonne, my thoughts with you. I am somewhat devasted that just as my husband got to retire this condition chose him! He is 68 and looks ten years older - the thing he hates most about PSP. The joy of retirement and doing 'our thing' has been taken from us even though I try and make the most of his good days. Neuro think he has two more years of kinda walking and getting about and then say it will get a lot worse. I have a medical condition myself and have pain pills at night that, at least, relax me enough that most nights I do sleep. Last night was difficult as other half was on one of his 'gotta go loo' nights and up and down. I know there is much worse to come and not sure how will deal with that but it is traumatic to see the person I know disappear. At present he can still get out and walks the dog several times a day, using a walker, he goes out more than the dog needs but it feeds my hubby's fidgety moods. Am about to sort out the kitchen and bathroom so the flat is tidy and cleared ready for the sitter to come this afternoon. At least I get a few hours away. However not having any family around or caring to help - they have not been near since his diagnosis and we are not invited to family events in case he upsets the kids!! So yes I feel very alone, tearful at times and I admit sometimes wishing tomorrow wasn't another day.

S's family are like yours. Thankfully, mine are giving us full support. But it breaks my heart that my daughter, S's step daughter, is the one that is always here and not his son! S doesn't say anything, but I know it hurts very badly!!!

Lots of love

Heady

Malc has a younger brother that has said on several occasions that he must get down to visit him, but nothing has ever materialized. My biggest worry is what if something happens to me? At least I have got Malc into our local hospice for a day a week as an outpatient, they can assess him and advise us of any other clubs or centres that would be appropriate to him and hopefully they can find a hobby that he can take up and manager. My GP has said I needed more respite time so this is wonderful as he will, hopefully, get something out of these days whilst I have time to myself also, makes me feel better having time off when he can try something too.

It's awful, isn't it! Leaving them with a sitter. I hate it, don't enjoy the time off at all. The being kicked out of the house, is so hard. It's much easier when they go out. Get much more relaxation. Unfortunately S's time at the hospice has finished! So I lost that!

Lots of love

Heady

Heady you could always lay down for a couple of hours. Yes it is difficult having to go out, I suppose I am lucky my daughter lives around the corner, she is not working at the moment so at least I have some one to go for a coffee xxxxx feeling so fed up with life every Sunday I think I will have a rest and George is calling me, 3 changes of clothes and change the bed oh for a Sunday of doing nothing xxxx

Happy birthday Putland sending you a big hug and a big birthday wish xxxxxxx

Thank you so much xxxx

Gilljan I am so sorry about your family, the children would not be upset, kids take things in there stride, I suppose I am lucky in that respect, the children are around, my daughter lives around the corner, grandchildren visit nearly every day, the older grandchildren, just look sad when they see him. Wish I could give you a big hug, sending you one.

Gilljan my heart goes out to you and everyone else that is going through this horrible illness, George is not good with the walker, he is mainly in his wheelchair, even though the children are around it is still very lonely.

Have a lovely few hours to yourself when the sitter comes in, our comes on Tuesday, wish we all lived near to meet up and have a chat.

Look after yourself . Yvonne xxxxxxx

Yvonne thank you for putting into writing the frustration, overtired, on the edge of madness of a carer for PSP. It is also what goes through my mind in the dark of the night waiting for Margaret's next grunt, choke, moan, wail, finger click. Sleep comes slowly and is never refreshing anymore. You seemed to have touched a lot of us. All I can do is hope you have a better day today.

Best wishes Tim

hi yvonne

so sorry you feel so rubbish. i understand completely, i left for two weeks about 18 mnths ago just because i thought i would go mad if i did not have time to clear my head from this all engulfing hideous illness. i have had some counselling, at first i was very anti i had been a nurse and midwife for over forty years why did i need that!!! it has helped they talk about loss and adjustment and i now accept the life we have, you need some respite which i have on a regular basis. ring your local adult social services and ask for an assessment and allocated social worker, they help with this.

we have also found the local hospice invaluable, most run day hospital sessions which rog enjoys and again gives you time.

there are still very dark days, i think with all of us carerers as the disease is progressive and not predictable, and like you retirement plans have gone out the window. we have managed to have some times away in specially adapted caravans which have worked out brilliantly. you are not on your own, mail me for a chat anytime

julie x

Thank you Tim and Julie just one of those days with seem to come more often than not, we are going away in September for 6 days just us two and our 3 children, which should be lovely, then I have a week away with my sister in law, in November, so there is that to look forward to, just hate bed time, just want it to be morning, felt like this for ages. Love to you all Yvonne xxxxxx

Yvonne...Madeline left this earth at Easter.....I know what you are going through ,I wish she was still here but for herself I know she is so much better to have turned in that body !! After 11 years as a psp carer I was at the point for ex. that I even fell asleep twice while driving,both times the good Lord kept others safe when I crossed the road.None of these experiences will help but just know that what you are doing makes you an angle on this earth,try to cope a little longer or you will beat George to the gate,that definitely will not help either of you,love,Rollie

Thank you Rollie x

Yvonne, I am so with you ! I could have written your message, but maybe not so eloquently. I am sure you have summed up how we all feel at times, it is so heartbreaking for us and our loved ones.

No more I can say except I completely understand and echo your thoughts.

Chin up (easy to say but incredibly difficult to do !)

Thank you all phone up the councillor she is going to come and see me, Isobel hospice sorted it out for me, rang her today, because I kept putting it of, but think the time is right. Just feel guilty don't know why, I feel am I doing enough for George, could I do more? I never seem to stop, I am either mopping up the bathroom floor, washing, changing the bed, he sits in his chair, not talking much, when he does sometimes I find it hard to understand, it is 2.30 he won't get up, so I have left him to sleep.

We'll have to go get the washing in looks like rain. Love to you all Yvonne xxxxxxxx

Oh Yvonne! I've checked the moon, not full for other 8 days!

Really sorry you are feeling like this. Go to the doctors and get some sleeping pills! TODAY!!! You don't need to take them every night, but just the nights you know you are not going to sleep. Just knowing mine are by the bed helps, because I KNOW, I could sleep, if I really wanted to. Somehow, that's sends me off!

I rarely cry at night, although, I spend many, many hours, lying there, mind going round and around! It's got to be the worst feeling. I often think, I'll get up, do something, but rarely do, too damned tired to move! How can you be so tired to move, but still can't sleep? Wish I knew!

I try and think of good things. Try planning your wardrobe, for your up and coming holidays. Or the diet you are going to have to go on, to get into that dress!!! You know the sort of thing.! Might as well make the time usefull.

Hope tonight will be better!

Lots of love

Heady

Thank you Heady, going to try and get an appointment with the doctors, am trying to loose a bit of weight, my dresses fit, thank you heady for your kind words. So much washing today, just finished the ironing, going to watch TV for a bit and wind down. Sweet dreams to all. Yvonne xxxxxx

Yvonne I too cry a lot. My husband now has a feeding tube and it has affected our freedom to go out