I know it is Feel Good Friday but ...

[AliBee1]

I am trying so hard to be positive but not doing a terribly good job of it at the moment. Nigel developed a bug that was only resisitent to IV antibiotics so had to be admitted again, with all the problems that are associated with that: for example despite a 'This is Me' and telling staff things about his condition and abilities, I would still go in and find a full mug of coffee or tea in front of him despite the fact that he has thickened drinks and a beaker with a lid and a spout. He could easily have spilt a mug of hot drink all over himself if he had decided to investigate what was under the the mug which he often does with things. He developed leg ulcers yet again in hospital because his catheter has rubbed and because his legs are not creamed properly and soap is sometimes used which it is not supposed to be. Anyway he had another fall in hospital which made him even more nervous - 4th fall in 6 weeks and I had only gone to get myself some lunch. After that movement falls monitors were finally put in place and he was moved opposite the nurses station. As he is now leaning backwards the zimmer frame comes up with him he was supplied with a transporter for round the house a month ago but it was so huge I could not move it through doorways so could not use it. Anyway he ended up being in hospital 12 days and I spent most of the day there too as they have insufficient staff to monitor his eating and his attempts to rise from the bedside chair and walk unaided. He was almost peaceful whilst I was there but was kicking off in the evenings and at night and they had to phone me several times to calm him down and when he came home he was awful at night as he thought he was still 'imprisonned' in hospital, so very little sleep. I cannot get him out of the house due to his mobility so we cannot go out and he has no concept of Christmas or the fact that it is my birthday on the 23rd.

Good things: 1. He is home 2. He was so disruptive overnight in hospital that his night activity has been assessed and recorded and I have now been issued with WendyLet sheets which are 100% better than slide sheets 3. He has been supplied with an older smaller narrower 2nd hand transporter from the stores which means he stands on it then sits back on the moveable seats and can be pulled around on in it instead of using the zimmer. 4. A referral has been made by the marvellous OT rehab team to Social Services for a ramp to the front door. 5. His legs are healing well. 6. The weighted blanket as suggested by the PSPA help line is doing its magic again and although he wakes he is not nearly so anxious so I am not as tired. 7. He loves the Christmas lights 8. Our carers are taking it in shifts to sit with him on my birthday so I can go out for a meal with my daughter and family and get to the carol service. 9. I have finally accepted that I need to do this without him as I cannot get him out.

Well tht's it from me. Lets hope that Christmas will not be too stressful for us all and without any major disasters and no need to contact 111!!!!. May Angels guard over you over the Christmas period. Love to you all. AliBee

[Hidden]

You are having a far to eventful Christmas.

Happy birthday. Enjoy your meal out.

[AliBee1 in reply to Hidden]

It will be a very quiet Christmas but I had a love filled birthday with family and friends Nigel was happy at home with our wonderful carer.

[dollydott]

Goodness me AliBee

You certainly need a little break

So enjoy the carols and a big happy birthday for the 23rd. Enjoy your day you deserve it.🎂

Your husband will be safe and cared for.

Wishing you a peaceful christmas

Love Lynda x🎄🎄🎄🎄

[AliBee1 in reply to dollydott]

Thank you. The carol service was lovely and before it started they samd happy birthday to me xxxx

[raincitygirl]

Best of luck with Nigel's re-settling in home Ali: its true we think of hospitals as "safe" places but sometimes you've got to wonder!😩

He will have the best possible Christmas at home where its familiar - even when you're not there 😊

Happy Birthday on the 23rd! Stay positive - you do a great job for Nige.

❤️💚❤️💚

Anne G.

[AliBee1 in reply to raincitygirl]

Thank you. There are so many things I want to alter in the hospital by raising awareness but it may be something I will not be able to do until Nigel is no longer with me and I have time. They are such silly little things but would make such a difference to those who cannot speak up for themselves.

I had a love filled birthday with family and friends and as you said Nigel was happy at home with our wonderful carer. Christmas will be very quiet and we will probably curl up watching TV as Nigel has no concept of it being a different day and we have seen all the family over the last few weeks or yesterday for my birthday and if he sleeps like he did last night I will probably fall asleep like him. We were watching TV for over an hour at 2am but at least he was relaxed and quite happy once I had convinced him that he could not go and sort out the waterworks at the head of the valley because no one else would be working in the dark. The weighted blanket really seems to have stopped the anxiety. Have a good Christmas. Big hug. AliBee

[raincitygirl in reply to AliBee1]

And a happy Christmas to you too, Ali ☺️🎄⭐️❤️

Anne

[Marie_14]

Ali you must be worn out? Whoever said this was happy Friday by the way?!

Glad you have got things sorted out at home now. That is a scary tale about the hospital. Thank goodness you were so vigilant.

Happy Birthday for 23rd by the way. Enjoy yourself, it sounds like you have things sorted at home so time for you Ali.

Marie x

[AliBee1 in reply to Marie_14]

Hiya. No one said it was a Happy Friday but a Feel Good one and I was finding it very hard to feel good. As I have said to Raincitygirl the hospital really bugs me over little things which could be improved with better communication. I had a love filled birthday with family and friends Nigel was happy at home with our wonderful carer so I need not have worried although I wish I could have shared more of it with him. Love AliBee

[doglington]

Oh dear, what a dreadful time for you both.

I also believe in being positive but found with PSP that sometimes you just need to indulge yourself in feeling sorry for yourself. Then you are refreshed for keeping on keeping on.

Happy birthday.

Big hug from Jean x

[AliBee1 in reply to doglington]

Nigel has CBD which I believe has a bit more cognitive loss than PSP so I wrote the poem below about feeling sorry for yourself. Thank you for your response. This site makes me feel so supported. Love AliBee

Feeling Sorry for My Self Syndrome (FS4MS)

I’ve found a new syndrome, called FS4MS:

it can hit with a vengeance, and is hard to suppress.

Dementia carers are often afflicted:

their inner reserves being severely restricted.

It most often hits when life’s at its hardest

and the person it hits, is not at their strongest.

The effects of this syndrome are very disruptive

as how it affects normal functioning is quite unconstructive.

It can make one want to be spoilt, and cared for, and be number one,

to stop being responsible, and go out and have fun.

It can make one desire not to ‘get out of bed’

or to open the door, and take flight instead.

Patience can varnish, and a scream erupt,

or frustration take over and tears bubble up.

However, once one’s a carer, one must be reliable

but sadly this syndrome can make one feel friable.

So it’s very important to face up to one’s feelings

for, not letting them go will prevent any healing.

Accept, that the way one is feeling is quite justifiable:

and that once ones a carer, one is very susceptible.

Accept that, there will be a degree of resentment,

and believe it’s no failure to feel discontentment.

It is sad that this syndrome can be so destructive

for once one’s a carer one must be productive.

The solution to the problem must come from within

but, being a carer it’s hard to begin,

for one’s very restricted in what one can do,

so the possible options one will need to review.

One will need to accept that there’s things one can’t change

but there will be some things, that one can rearrange.

Don’t let this syndrome control the life that is yours,

so listen to music whilst you’re doing your chores.

Go out into the garden for a breath of fresh air

or, if you have faith, you can say a prayer.

You cannot go out on your own, for a drive, or a walk,

but you can use the phone, to have a good talk;

But, if you need to be careful, or it’s the wrong time of day,

use email, or text, to let your thoughts ebb away.

Share how you’re feeling with friends you can trust:

letting go of your feelings is really a ‘must’.

Controlling this syndrome, your life will refashion,

so you can live it with love and compassion,

for the person for whom you are caring:

knowing –

that it is not their fault, it’s their burden you’re bearing.

[doglington in reply to AliBee1]

Yes !!

It says it all.

x

[Nanny857]

Ali sorry to hear you've had such a horrible time but glad your husband is back home and starting to settle.

Happy birthday for 23rd. I hope you have a lovely meal with the family and get spoilt and enjoy the carol service. May you have a joyous and peaceful Christmas. Love, Nanny857xx

[AliBee1 in reply to Nanny857]

Thank you. I had a love filled birthday with family and friends and Nigel was fine at home with the carer. I missed him at the carol service though as he used to have such a lovely voice and would sing the carols far better than I can. Love AliBee

[Katiebow]

That was quite an eventful account of your lives highlighting the perils of PSP and how their needs are often overlooked in hospital. It's good it has triggered help with equipment, vital when you are caring for someone with PSP. Glad you are able to get out with your family and Happy Birthday on the 23rd.

Love Kate xxx

[AliBee1 in reply to Katiebow]

Dear Kate, As I have said to Raincitygirl it really bugs me that things that could be rectified in hospital are not put in place. Nigel has CBD and cognitive impairment and I just find that they do not communicate his needs. Very sad. The latest booklet produced by the association on CBD is excellent though and I am trying to make sure professionals know about it. Have a good Christmas. Love AliBee x

[LuisRodicioRodicio]

A big hug.

Thanks for sharing.

Happy birthday.

Luck and courage.

Luis

[AliBee1 in reply to LuisRodicioRodicio]

Thank you. This site makes me feel not alone. xx

[LindaK12]

Please enjoy Christmas as much as possible. My husband is in hospital at the moment but coming out for Christmas lunch. Home soon I hope.

Happy birthday too!

[AliBee1 in reply to LindaK12]

Dear Linda. I hope that you have a wonderful lunch with him and that he will be home soon. Nigel eats very little these days so we are having Nigel friendly food. God bless AliBeex

[Cuttercat]

Bless you both and my prayers are with you. Peaceful is the key and PSP can make that hard. Hang in there and I’ll keep you in my prayers

Cuttercat

[AliBee1 in reply to Cuttercat]

Thank you. Peaceful is hard sometimes. I had a right hissy fit the other day when I could not get the transporter over the metal strip between two carpets but I stopped offered up a prayer for help and then found I could move it if I pulled rather than pushed. God can work in mysterious ways. Thank you for your prayers. They are valued.

[Jdjdjd]

I just wanted to chip in and say we were given a kalouf, which is a remote controlled standing hoist, by our OT, and you can use it to lift off the bed out of chair,onto the toilet, and the legs move in and out to fit around furniture, I found it indispensable when Ian was mobile, but now we have a hoist, we also had a ramp fitted from our back door, as this was the best option, but whilst we were waiting my son in law made a wooden ramp as we had 2 steps into the house, it helped until the OT did the work, we had to get a grant from the council and they put in a wet room too

Hope all goes well, sounds like you’re doing a great job

Happy Christmas xx

[AliBee1 in reply to Jdjdjd]

That sounds like an amazing bit of equipment. I will make enquiries. I also thought about our french windows which have only the one step over rather than the steep step at the front door. I am sure someone in the family could make a wooden ramp for us. Thank you for making me think laterally. I had a wet room done when we moved into the bungalow in July. Nigel has CBD with a degree of cognitive impairment and it always seems to take him a while to adjust to being home if he has been in hospital for several days. We will have a quiet Christmas with Nigel friendly food as his swallowing is not very good now and we have seenall the family over the last couple of weeks. I hope that you will have a Happy Christmas. xx

[Servena03]

AliBee, you are suffering the hell that this brings, you are doing wonderful so hold in there. Your hubby is just further down the line than my John, I don't know how I would cope with your traumas, but me and my children have decided that this Christmas (as we feel it is likely to be his last) are all going to go away together, we have hired a disabled cottage where we can be together, planning on having lots of fun, no tears. We can all share the burden which I will appreciate, any problems we can call 111, even hired a wheelchair access car, 3days of bliss for me, my son and his wife are joining us too from America. I hope you can have some respite too with family, let's all try to have loads of love and hugs with fun this Christmas, the PSP takes away their speech but I'm sure they can feel the warmth and atmosphere around them, best Christmas wishes to you all, lol xxxxxxJean

[AliBee1 in reply to Servena03]

Thank you. Have a wonderful time away sharing care and fun with your beautiful family and making memories to hold on to. Love AliBee x

[Tippyleaf]

Dear AliBee

Hospital sounds absolutely horrendous! Why is it that healthcare professionals don’t listen to PSP families arrrggghh!!

I hope your husband settles now he is at home and you get to have a lovely birthday celebration. A few hours without responsibility is so revitalising.

Look after yourself

Sending lots of love and a big hug Tippy xxxx

[AliBee1]

Dear Tippy. I did have a lovely time yesterday. Although I missed him with me he was quite happy at home with one of our carers. I was getting myself het up trying to work out how we could involve him and then forgot about me. He always takes a while to settle down after a stay in hospital and each time it seems to take longer. I am so grateful to the Association for producing the new booklet on CBD. It is excellent and I am trying to get those professionals involved with his care to read it. Thank you for your support. Love AliBee