Tearful morning

[AliBee1]

Nigel would not eat yesterday and his lean to the right was worse and then he had awful diarrhoea in the night. After nothing but grunts and ramblings and having put the 3rd wash into the washing machine I ended up in tears but then I read Sarah and Yvonnes' posts and realised that I was so lucky still to have him even though he has had CBD since 2015. AliBee

[dollydott]

I'm exactly the same Ali some days I'm just a wreck. Then I read another loved one has gone and I hug my mum tight.

So many have lost their loved ones this year and I send love and hugs to you all.

❤❤❤❤❤❤❤❤❤❤❤

Love to you Ali and wishing you strength to hang on in there.

Lynda xx

[Hidden]

It’s so very hard at times to keep it together. Hope things improve soon.

[AliBee1 in reply to Hidden]

Thanks Jeff. Things are better today. Nigel has better mobility and I have had conversation with him this morning instead of grunts and a lovely wake up smile and the sun is shining. I was given some solar lights for the garden for my birthday on the 23rd and I have just put them out in the garden so should be able to enjoy them this evening. Love AliBee x

[easterncedar]

Hugs to you, AliBee. You are in a very hard place, I know! Hang on. We are with you. Love, Ec

[AliBee1 in reply to easterncedar]

Thank you. I did not see anyone Boxing Day as everyone was busy with other familiy as they live at a distance but this forum gives me a family who understand and who I can be honest with. Love AliBee x

[Dadshelper]

Dad had diarrhea so bad a few times I couldn't keep up. All I could think of was setting up the bedside commode, bucket removed, in our walk in shower and have him sit there. Least with the hand held showed head I could keep him mostly clean till it passed. As I recall the diarrhea and loss of appetite went hand in hand. Keep your chin up, it will stop.

Ron

[AliBee1 in reply to Dadshelper]

Dear Ron. Thank you. I just had not put the non eating and dairrhoea together but do realise that in hindsight that I should have as it has happened before. I was not thinking laterally just annoyed that he would not eat the food I had made specially !! My problem is that our neurologist has told me that Nigel is now on stage 3 of his CBD decline that anything can knock him off his perch mobility wise, including diarrhoea, so when anything like this happens he is almost immobile and subsequently I cannot get him out of bed which makes it such hard work to clean him and the bed up. I was so grateful for the WendyLet sheets that we had just been issued as it meant I could slide him even though he becomes a dead weight and then I could roll the sheets up and remove them. The funny side of it is that as our carer said this morning - if he had eaten more Boxing Day I could have had a much bigger problem on my hands that night !! Thank you once more AliBeexx

[demlac in reply to AliBee1]

Hi Alibee1

Just curious to know what your neurologist means by stage3 of CBD...

What are your hubbys symptoms?

I don’t really get any answers in regards to my hubby they just say (it’s part of the disease) it’s frustrating

Take care

[AliBee1 in reply to demlac]

Dear Demlac. In the PSPA leaflet for 'A guide for PSP and CBD for Ocupational Therapists' on page 14 there is a chart about the stages of PSP and standards of care. It can be viewed on line if you go into the PSP website under Professionals and then Occupational Therapists. I know that it is not in the newest brilliant leaflet by the association on a Professional Guide to CBD which was published in December but our neurologist referred to the Advanced Stage which is stage 3, the 1st two being early and mid stages. What he said was that Nigel was slipping from mid stage into advanced stage whenever he was ill from any reason, as he tends to then seize up. His mobility has reduced considerably and he has needed a wheelchair when out for about 18 months and I or our carers use a lightweight one round the house if he gets sticky feet or if he is leaning to the side or backwards too much. The problem with the latter is that as he leans backwards the zimmer frame comes up off the ground with him so I now have a belt to go round his middle to hold him stable from behind rather than holding onto his trousers as we have been doing. He is a dead weight when leaning or when he has seized up. He can often stare into space or appear to be looking right through me. I once asked him what he was thinking when he was staring intently at something to which his reply was 'Oh Ali. I cannot look and think atthe same time'. His speech now goes if he is poorly. He grunts a great deal, rather than talking, and i have told him he is like a grizzly bear sometimes, which he loves as he loves anything to do with wildlife but the grunting can drive me scatty at times !! He and I still both have a very warped sense of humour which usually helps me a lot. He is on a fork mashable diet and has thickened liquids as he chokes easily and has been admitted to hospital a couple of times with aspiration. He has adapted cutlery which works well but he cannot often cut food up so uses a spoon and fork and often gets food onto his fork and then has to be prompted to put it in his mouth, which he often opens wider and wider rather than moving the fork or spoon up. If he is poorly his beaker has several attempts at various places on his face before finding his mouth. He also sleeps a lot but during the night he is usually wide awake for a couple of hours but his weighted blanket seems to have reduced his agitation although he can be quite disorientated, which I have learnt not to argue with so we have some very odd conversations. He does not like being in a group of people and is pretty hard work in hospital if I am not there and he does not cope with change at all.

He was diagnosed early in 2016 but looking back it probably started in 2014 or sooner. I know that is so very frustrating trying to find things out. We were so lucky to find our neurologist because I went to a PSPA meeting whilst we were on a respite holiday and he was willing to take us on (and another friend with PSP) even though we were out of area. We had a 2 hour consultation with him and I can contact him or his marvellous administrator by email, so I feel so much more supported. One day in our local A and E the consultant admitted that he had had to look CBD up on google which left me feeling pretty vulnerable. When was your husband diagnosed? I hope that this has helped and not been too long winded or scarey. Good luck to you both and big hugs AliBee.

[demlac in reply to AliBee1]

Hi Alibee1

Thanks I’ll look up that pamphlet...

My hubby was diagnosed withCBD December 17th 2018.

Although like you first sign of symptoms was probably 3 years earlier,we thought he had a stroke at first, he’s 47 years old he has been non verbal for nearly 2 years but had a peg inserted in August and was having mildly thick puréed foods.

He has been in hosp for nearly six weeks now after a fall at home where he broke his hip and developed pneumonia and blood clots on his lungs.. His swallow has completely detoriated, so no food or drink at all..

He has no use of his right arm and his right leg is catching when he walks,

Cannot turn his head to left or right, raise his eyebrows, poke out his younger, nod his head, also gets that vertical stare and yesterday when I got to hospital he was looking at me like I was different. I have learnt that he doesn’t have to speak for me to hear what he has to say. He also can laugh and cry a lot. Hate this disease but love him!!! So hard at times all the memories of what once was!

But we just take it one day at a time.

Wishing you all the courage you need.

Demlach x

[AliBee1 in reply to demlac]

Dear Demlach. I am sorry that I did not respond sooner but I have had a filthy cold and felt little like communicating with anyone. Very sorry for myself as I felt as if I had been in a boxing match!

Your poor husband sounds very poorly and far worse than my husband is and so young. I lost my first husband when he was just 55 and it seems especially cruel when someone is younger. You must hang on to your lovely memories as they will carry you through and even years later you will suddenly remember something and laugh. It is lovely that you can understand him without him being able to speak and that he laughs a lot. Very special.

I wrote a poem after Chris died called One Day at a Time and I agree with you that this is the only way to cope with CBD. Please let me know how things are going with you both.

Big hug. AliBee xx

[demlac in reply to AliBee1]

Thankyou

Hope you feel better soon.

I too seem to have the most amazing poetic words about all of this mess come to my mind I should really write them down.

Take care

[AliBee1 in reply to demlac]

You should. It will help you now and later and it will help others. I am writing one at present but waiting for the words to come now that I am feeling much better.

Love and support xx

[demlac in reply to AliBee1]

Wouldn’t it be great if everyone could write a chapter on there love ones and there experiences and it could be collated together!!!

It could help a lot of people!

[AliBee1 in reply to demlac]

Lovely idea xx

[Tippyleaf]

Dear AliBee

The tears of love, exhaustion and frustration can be overwhelming. Having been there recently when my hubby had a tummy bug I feel your pain. Please be kind to yourself. I hope this episode soon passes

Sending love and hugs Tippy

[AliBee1 in reply to Tippyleaf]

Thank you. He seems a bit better today which is lovely and it is sunny. xxx

[raincitygirl]

Dear Ali,

It is so true: Widowhood is "easier" in many ways: no-one to interrupt your sleep (except your own mind) no-one to clean up after; no-one to call the ambulance for; no-one to bite your tongue for; no-one to think constantly about; no-one to hurt your back, trying to save from a fall or hump in and out of the car; no-one, no-one, no-one......

Of course a person can't truly feel any reality except the one you are in the middle of: so though all us widows and widowers will say the same thing "What I wouldn't give to have him (her) just alive again.." the caregiver is too exhausted, burned out and worried to enjoy - yes I did use that word on purpose! - the spouse's being.

It's one of the very cruel tricks of CBD & PSP.

Although his decline is steady, and we know the end keeps moving closer, I will still wish you a Happy New Year - and 'enjoyment' of your dear spouse alive for now. Hang in there!

Hugs XXX

Anne G.

[AliBee1 in reply to raincitygirl]

Thank you Anne for your thoughtful response. I will hang on in there and today Nigel seems a bit better and I have had some conversation from him today and a lovely wake up smile and the sun is shining and I can enjoy this. After Chris died I felt just like you about my own space which is where my poetry stepped in. Now with the loss of my own space caring for Nigel I can feel like I am attached to a piece of elastic but I have started to pencil draw again which I can do when I am in the lounge with him and he is asleep and which I can put down quickly if needed. I think the differenec is that when one is a widow or widower one can get out whereas a carer often cannot. The fluorescent light in our kitchen went last night and I have had to ask a friend if they can go and buy me one as I cannot get Nigel out. I wish you a Happy New Year too. Big hug AliBee

Space

Since I've been on my own I've changed my role.

There's no longer someone sharing my soul,

with the result that my life has changed its face,

for when I'm not working I have all this space.

Into this time ... which is now all my own,

poetry came and set up home.

But poetry didn't come on it's own.

it came with sound ... and colour ... and light,

as if I was given a second sight,

to live my life on a different sphere,

with an all-seeing eye, and appreciative ear.

The sound of my wind chimes blowing in breeze,

can magically calm me, and my tension ease.

Coloured light from my crystals, a rainbow can form,

which can ease my soul when I'm feeling forlorn.

I can use the music I love ... to relax or to thrill.

As I'm on my own, I can choose at will.

If I chose to sit quietly with music and book.

It causes no problem if I decide not to cook.

And when there's no one to talk to ...

for there's nobody there,

I don't feel so lonely if the music is loud ...

and fills the air.

[raincitygirl in reply to AliBee1]

That's liovely Ali

❤️❤️❤️

Anne

[SewBears in reply to raincitygirl]

Thank you for the beautiful poem. Wow! ❤️

[AliBee1 in reply to SewBears]

Glad you liked it AliBee. It came from the heart xx

[Hiking13]

Don’t be too hard on yourself it is a long difficult journey caring for your loved one. I was so frustrated on Christmas Eve and Day with the washing etc because Steve had several accidents including a bit of diarrhoea. After Steve had passed I spoke to my sister and told her how guilty I felt for being so cross over the washing and cleaning up as I had really lost it a couple of times but she put things in perspective and said I had to think of everything I had done for Steve and not to beat myself up for loosing it a couple of times and that I had done so many many positive things for Steve and I think she is right. We are all human and there is only so much we can do. So please don’t worry about the tears of frustration as they are natural and just remember what an amazing person you are and how much you are doing for your lovely husband and cherish all the good moments. PSP sucks.

Sending you lots of love

Love Sarahxxx

[AliBee1 in reply to Hiking13]

Thank you so much. You always feel that it is just you. xx