Having another down day today😔

[Patriciapmr]

Just when I thought I was feeling strong and positive and thought I could cope with everything I'm feeling really down again. I think Keith has a cold which is probably making him feel worse, all he does is sleep and look really sad and all I do is flood with tears! I just can't stop, I don't know where all the water is coming from. He wants me to send for the doctor but I don't think he would be able to do anything so what's the point? I keep going in to check on him and he looks so vulnerable, it's just not fair, I so want to make this all go away but I can't and it's breaking my heart....love Pat xxi

[easterncedar]

Oh, it is heart-breaking. I'm sorry you and Keith are suffering so. When my guy had a cold recently, he really responded - as far as his mood went - to my giving him cold remedies as his mother might once have done. You know, a little cough medicine in a big spoon, tea and honey. My guy asks for the doctor, too, when I know it wouldn't do anything but waste everyone's time, but he wants the attention, I think, and of course he wants to feel better, in a way that will never come again. It's such an awful, hard, hard time, but as I tell him, I'm glad he's with me, no matter what. And I wouldn't trade places with the folks I know who have lost their young spouses to cancer and heart attack and diabetes. At least I have him here to love, and to love me. For a while.

Really just saying I hear you, Pat. I send you love and hugs. Hang on. Easterncedar

[Patriciapmr in reply to easterncedar]

Hi Easterncedar,

Those hugs were really needed, thank you!

It's such a lonely place to be in at times, I miss him so much, I know I still have him with me and I'm grateful for that but he's not the same person any more and all I want to do is make him better but I know I can't. All I can do is try to make the most of each day, make life as good as possible for Keith, but it's not easy as we all know too well when he is so limited to his capabilities!

These down days I find very hard to deal with as I'm quite an emotional person at the best of times, never mind when there is actually a real reason to make me feel down, I turn into a wreck and that's not going to help Keith at all is it?

Tomorrow is another day, let's hope I wake up with that positive outlook I had only a few days ago!

Thank you for replying to me, it does help to know I have friends out there who understand what it's like, most people just look at you as if to say "What's that, PSP, never heard of it?"

Hope you are both ok,

Sending you love....Pat xx

[easterncedar in reply to Patriciapmr]

Me, too. I don't know how I ever would have begun to cope without this site and everyone here. It helps me every day. Sometimes I think this situation exists because I need to learn to be patient and kind, and sometimes I think it's karmic payback for my being a selfish and temperamental cow - but I know HE did nothing to deserve this, and he's always been patient and stoic and loving and kind, and I want to rage against the injustice of his having to suffer like this. Its not right. But that's not the way life works. And there are millions of people in this world every day suffering unimaginable horrors for no reason I can see.

So on we go. I am grateful for you. Love and peace, Ec

[Yvonneandgeorge in reply to easterncedar]

Hi Pat, sorry you are feeling down today, this horrible illness, is just to much to cope with, feeling for you, because most of us have been in your shoes so many times, what is the answer, I looked and I can't find one, all we can do is look after ourselves, so we can look after them.

Sending you a great big hug, and we are all right behind you Pat, looking out for each other, and sending kind words, encouraging everyone to carry on, I wish we all lived near each other so we could meet up and cry and scream whenever we needed to, which is often. Does not make us bad people, just tried people.

The councillor came in on Thursday, made me see things in a different light, maybe you need to open up to someone as well, she was through the hospice, very nice person.

Sending you a big hug Pat, always here for you. 🎈Yvonne xxxxxxx

[Patriciapmr in reply to Yvonneandgeorge]

Dear Yvonne,

You are so sweet, I know you have just been through a bad patch and I appreciate you taking the time for me!

Sometimes it just helps to speak out when you can, it somehow relieves the strain knowing all of us are here for each other, just to let your feelings out to people who understand and want to help. Most people haven't a clue what it's like, I know they mean well but they have no idea of the pressures of this horrible illness!

I too think it would be so nice for us all to meet up, I feel I have found new, very reliable friends who I can count on no matter what!

Hope you and George are doing ok, sending you both lots of love and a big hug......Pat xx💌💌

[goldcap in reply to Patriciapmr]

Pat, your post struck a chord in me as I am a very emotional person as well. Sometimes I just get so overwhelmed I go outside (where he cannot see or hear me) and cry. Never fails to make me feel better.

Just know that you are not alone. Sadly there are too many of us out here who know exactly how you feel and what you are going through.

There are good and bad days. I tell myself when I wake up in the morning that it i gong to be a good day and if things fall apart I try not to be to hard on myself. Hang in there,

Big hugs,

Jayne G.

[abirke]

I have written you 3 times now with no record can you read this?

AVB

[Patriciapmr in reply to abirke]

Yes I have just read that message xx

[abirke in reply to Patriciapmr]

Oh good ..wait which msg?

[Patriciapmr in reply to abirke]

The one that said you had written to me three times, it was a reply to my "Having another down day today" post.....xx

[peterjones in reply to abirke]

yes avb loud and clear mate I can see it roger and out peter jones queensland Australia psp bloke take care mrs avb see yer mate

[peterjones in reply to peterjones]

and pat hang in there matey just off to respite ''' keep your chin up you ate not alone anymore mate peter jones queensland Australia psp bloke

[Patriciapmr in reply to peterjones]

Thank you Peter, I am so grateful for your support!

Love and hugs....Pat xx

[peterjones in reply to Patriciapmr]

hi pat your welcome I hope things are a bit better for you now

just off to respite again mate so chin up buddy have a terrific day matey peter jones queensland Australia lucky old psp bloke

[Yvonneandgeorge]

Pat tommorow is another day and if Keith has a cold just let him sleep, he will feel better in a couple of days, and while he is asleep you have a sit down with a cup of tea. Yvonne xxxxxxx

[Patriciapmr]

I put Keith to bed at 10pm Yvonne, he asked me to, he usually sits with me until about 11pm but he just looked so tired!

Going to have an hour to myself and then go for a soak in the bath (must remember to take Keith's alarm with me!)

Don't eat too many of those lovely cakes you might get tipsy!

Take care....Love Pat xx

[NannaB]

Hi Pat, by the time you read this it is probably a new day and I hope you have woken to sunshine outside and inside. All I can do is echo what the others have said really and send you a great big hug. I hope Keith's cold goes without added complications and you can get out enjoy what we have left of the summer.

X

[PUTLAND]

Hi Pat we can all relate to everything you feel its so hard. My heart goes out to you. Glad we have this site to express our feelings and replies from people that understand what we are going through. I send my love and a big hug. xx

[cabbagecottage]

we have carers but I always tell them I don't want them to come if they have coughs cold sickness of any kind .

thinking of you .

I often think it would be nice if we were neighbours and could help each other because we are really the only ones who fully understand .

[jillannf6]

hip pat

i too have just returned fm holiday and ha ve: :caused chaos on my return-: according to ny partner I fell in the bathroom about 2 hrs ago against a door stop *"a bloody chicken:" i call him but i have cut my head on him above the ear and the blood went everywhere

but he is off to a footy match so will have a better t ime when my carer arrives! (I hope) )

lol jilll

hugs and xxxx to you and keith and i hope he soon feels better - then perhaps you will too - i do hope so

[jillannf6 in reply to jillannf6]

sorrty =about the typos i still cannot read the screen v well at all= another PSP problem\

lol JIll

[shasha in reply to jillannf6]

I KNOW WHAT YOU MEAN JILL

[jillannf6]

hi pat

so sort you r downYESREREDYA

HOEP TODAY Has been l A LITTLE BETTER

[Patriciapmr in reply to jillannf6]

Hi Jill,

Yes today has been a bit better thank you, Keith slept for 13 hours last night so he must have been feeling really tired, I managed to get a good nights rest which has done me a lot of good and recharged my batteries! That positive feeling is slowly coming back to me thank goodness!

How are you? I hope you enjoyed your holiday despite the mishaps on your return!

Where did you go and did you have some decent weather? I hope so you deserve it!

Take good care of yourself Jill and thanks for replying to me,

Love and lots of hugs....Pat xx

[Yvonneandgeorge in reply to Patriciapmr]

Oh Jill I hope you are ok? And not to much damage to your head. Pat glad you are feeling a bit better today, I just sat down and thought of you, it has been a lovely sunny day, glad Keith had a good night, he was more than likely very tired, there is a lot of these flu like symptoms going around, I had a really bad sore throat at the beginning of the week, and kept sneezing, felt a bit rough, glad you slept well.

Granddaughter staying with us for the weekend has been lovely, not that we see her much she spends loads of time in the bedroom, watch films, but it is lovely having someone to chat to, she is 13 going on 23.

Love to you all take care Jill, and so happy pat you are feeling better. Xxxxxx

[Patriciapmr]

Yvonne, my granddaughter is 5 going on 15 bless her!

Thought you may like to see a photo of her with her brother, they are so gorgeous and I love them to bits!

Thanks for thinking of me, I often have all of you in my thoughts.....

Love and hugs....Pat xx

[Heady]

Hi Pat, sorry for the delay in replying. Hope Keith is feeling better now. How I dread the thought of winter coming. Our first full one in England for years! I know the first sign of colds, we will both go down with it. No sun resistance!

I don't know how to cheer you up, just hope time as done its work! This illness is a real roller coaster ride, you get sea sick, with the sudden ups and downs, although there seem to be more downs than ups now!

Just been away with the family for a wonderful weekend camping in North Devon. Anybody that way will know how wet it was!!!! S had a great time, laughing with everyone. The only problem was, he couldn't move. The wet weather just got deep into him, although most of the time he was in a very warm caravan, or wrapped up well in our tent. Trying to shower him in a tiny shower room, was impossible. My sister had to help, not nice for him. For the first time, since all this started, I saw him cry. A tear rolled down his face! Broke my heart. Another part of our lives closed. He loved camping! I know all good things come to an end, but why with PSP, does it have to wave a finger in your face, and kick you in the teeth at the same time?

Things are changing, we are on a slippery slope at the moment. Each day seems to get worse. I don't know what to do, who to talk to. I was good at the fighting stage, trying to keep life as normal as possible. But I am floundering now. Life, even as we had got to know it, is over. I really don't know how to cope with what I have to face now.

Thankfully, I have the community nurse from the Hospice coming tomorrow. Desperately trying to get them to take him back to the day centre. He needs it so much. He has gone downhill,so quickly since they stopped his visits. Almost to the point, where they might not take him anyway.

Oh Pat, what do we do? I try very hard not to do the why bit, but WHY WHY WHY.?????????

Sending you a big hug, 'cause I need to cling to someone!

Lots of love

Heady

[easterncedar in reply to Heady]

Oh, Heady! I hear you! We are so much in the same boat as you and S. We aired out the camper this spring, but I know we will never use it again, and I know I have to be getting him ready to accept going to day care, at least for some time in the week, because he's not safe at home alone any more. Heck, he's not safe when I AM home. We do have our ups as well as our downs, but the downs seem to be getting more powerful and the ups weaker. Like being seasick, as you say! I am glad you can say that you had a wonderful weekend, even with the trouble. We have to hold on to the good times as hard as we can.

Hang on, my dear. A hug for you and Pat with love from Easterncedar

[Heady in reply to easterncedar]

Thanks Easterncedar! Much needed. Need to hold on to the good times. Very precious and not many these days! This morning is the pits! Don't know how the rest of the day is going to pan out, but I do have two visits from different people from the Hospice. So hoping life will be a lot easier by the end of the day!✈️🐷🐷🐷🐷🐷🐷🐷🐷✈️

Lots of love

Heady

[easterncedar in reply to Heady]

I hope the rest of the day was an improvement for you, Heady. Do tell! I'm always at sixes and sevens now; can't seem to get organized at all anymore. I'm not very useful at work, but the office is my respite, as well as my living - I'm not giving it up yet!

The therapists we have visiting the house are not as useful as the ones we used to go to - they don't want to DO the exercises with him as much as they want to assess and advise, and my guy really needs the actual exercising. He could use a personal trainer. The visitors do break up the day, anyway. I hope your visitors are more useful.

Best, Ec

[Heady in reply to easterncedar]

S has a personal trainer. She also runs the exercise class he goes to at the gym. Which is great, as she really understands his needs and he trusts her completely!

I really don't know how you manage to work, there are times, when I don't even know my own name, much less my job. Officially, I do still work, but I am the Company Secretary of our Company, therefore only have to sign certain documents at the end of the year. Hence the problem of knowing my name!!! Employ others to run the Company. Just I could find someone to come and run me! Life is soooo busy, constant appointments. Yesterday, we had 4! Thankfully, today there is only one, AND it's for ME!!!!!! Osteopath, much needed!!! Then off to the Mall, need new quilts. Need I say more!

On we go, I am soooooooooooooo tired!

Lots of love

Heady

[Patriciapmr in reply to Heady]

Hi Heady,

I am feeling a bit more positive today although I know that won't last very long!

We have been to a group meeting in Sheffield today where for the first time Keith has met other people with PSP. I'm really not sure whether that has helped him or not because all he wanted to do was go to sleep or go to the toilet (again!)

I did get to chat with other carers though, going through exactly the same thing, which like this site has helped me a lot.

Keith is being very difficult at the moment, I know it's only because of the frustration he must feel because of this horrible disease, he is totally aware of what's happening to him and sometimes I think it may be better if he didn't understand.

He has been quite nasty with me which is so unlike him and very distressing, I try to switch off to it all but I'm not the sort of person who can easily do that and end up getting stroppy with him and regretting it!

What on earth do we do, how do we cope? Like you I know there is no answer but to just keep plodding on, each day brings different problems to which there is no answer, all I can say is that I'm so grateful for all of you on this forum who give me the strength and resolve to carry on and support Keith the best way I can!

I send you my love, I need you to cling on to as well!

Take care....

Love and hugs....Pat xx

[timinsuranceman]

I hope you all have a reasonably comfortable evening and even though I don't know what day it is, it must be near the weekend. Honestly, I don't think people at large know who we are. I'm a bit far gone to do much but our treatment is not good and I am going to look into it.