Wonders of respite: I just read Yvonne's... - PSP Association

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Wonders of respite

17 Replies

I just read Yvonne's post about exhaustion and here am I feeling refreshed after ten hours' sleep. I am bundled up in sweaters and heavy coat but sitting in sunshine at 9am which will get stronger as the day goes by. The hotel is great and later today I shall swim in the indoor pool then go to the hammam. Not only is a break like this good for catching up on sleep but also gives time for reflection. Reading Yvonne's post about George repeatedly calling for her I realised Chris hasn't done that at all. He has always been a very passive, undemanding person and it seems to me that is why he has accepted PSP. In the earlier stages when his passivity meant he wouldn't exercise it drove me mad, but now we are approaching the end it is actually a benefit for us carers. When he asks to go to the toilet we just say 'You don't do that anymore, remember?' Whether he remembers or not is a moot point but he accepts, and we get ready to change him. I think a person's personality traits prior to PSP are exaggerated once they have the condition. Being here alone is also a taste of my future and I know I will cope fine. And I have just taken off my heavy coat as sun is higher and warmer. Now for a little translation work after I get my coffee refilled. A respite break is highly recommended.

17 Replies
NannaB profile image
NannaB

I'm so pleased you are enjoying yourself and already feeling the benefit. George sounds like Colin and has never been demanding. We went through a short period when he wanted me more but he said it was because he was scared of falling. Enjoy the hammam. When I went to one in the village we stayed at and I was the only westerner there, looking bemused as to what to do, I was grabbed by two very well endowed Turkish ladies wearing large White gowns which were sticking to every lump and bump as they had just got out of the water. They washed/scrubbed practically every inch of my body putting their hands inside my swimming costume and fingers deep into my ears. I closed my eyes and thought of England. I was then walked into an extremely hot pool with lots of other wet tea shirt ladies and then into a freezing pool. I had gone into the Hammam with an American woman I'd just met but didn't get a chance to speak to her until we came out. When we did meet again she said she had never seen anything so funny in her life. They left her alone so I'm not sure why they grabbed me. The Turkish ladies thought it was very funny and chatted and laughed all the way through so I'm happy to have brightened their day......I was in shock but can laugh about it now.

Have fun in the sun and please send some in our direction.

X

Amilazy profile image
Amilazy in reply to NannaB

Thanks Heady for the laugh your experience mirrors mine and M's in Morrocco, 2 bemused Brits separated by excited but kindly locals, great experience really relaxing and cleansing, as you say good memories.

Pattz sounds like your respite is doing you good continue to recharge and enjoy.

M has only recently began to call for me but it tends to be over night and usually settles when either I go to bed or Marie Curie nurse sits with her. During the day only calls when she wakes and I am out of the room doing things, sometimes I feel like a yo yo. I agree with previous character but I also think PSP sometimes changes personality.

Best wishes Tim

cabbagecottage profile image
cabbagecottage in reply to Amilazy

I can relate to the yo yo Tim. jOhn isn't demanding at all but his parkinsons certainly is .

I can sit or nod off for a while sag alongside of him but as soon as I leave the room to do anything else , prepare a drink meal etc I will hear him trying to call me . It's so frustrating isn't it .

Even when I am preparing his meal I am back and fore to him checking he is ok and still alert enough to manage to eat it . And I mean back and fore , he can switch off In a blink .

Last night after the carers left it was 10.30 and I already decided to put my feet I. A bowl of nice soapy oily water and see to my nails ..thinking I was safe for at least half an hour . Was I heck .bowl of water all ready towels waiting . I had to rehoist him his bobottom was so sore . . He never complains unessessarily , of course that takes me half an hour at least .

I was determined to still see to my feet . Otherwise I would have had holes in the front of my shoes from nails protruding .

It was twelve thirty by the time I did get upstairs .wo bang goes another earlier night .

Katiebow profile image
Katiebow in reply to NannaB

Your post made me chuckle, can just see it in my minds eye. Xx

Heady profile image
Heady

Hi Pattz, glad to hear you are having a great time and most importantly, able to relax. But why you are wasting your precious time talking to us.....

I don't know about the personality trait prior to PSP, S was VERY demanding before all symptoms kicked in. We worked together, so I was at his beck and call 24/7. Perhaps that was one of the first symptoms, just didn't recognise it at the time. I must admit, it was always when something went wrong and he wanted me to fix it. Now, he can't call me, even if he wanted to. He has decided to stay in bed this morning, I have left a bell beside him, but I doubt if he will use it!

Post a tiny bit of your sun to us PLEASE,!!!! The rain here in UK, is just awful, even by our high standards! I don't think we will last until spring, all will be washed away!!!!

Carry on enjoying your break.

Lots of love

Heady

in reply to Heady

Heady, just thought I should let you know that it is pouring down here today but that has actually raised temperature so no complaints. tomorrow I go to Istanbul which was under snow a couple of days ago so am hoping that will have disappeared by the time I arrive. I get home Thursday night anf should awake Friday to sunshine and temp around 20. So that's OK.

Yvonneandgeorge profile image
Yvonneandgeorge

pattz so happy you are having a good time, I think you are right about about how a person was, and how they accept PSP, George was always demanding, he liked attention, he does not accept that he has PSP, I wish he did, but said I told the doctor he had PSP, which is difficult, Yvonne xxxxxx

Craines profile image
Craines

Hi, wish my experience of respite was as good as yours. We were more or less forced into my husband going into respite on Christmas Eve! I don't think he has had the best of care and I have spent the Christmas/New Year holiday mostly on my own. Don't think too much of social services help.

Escada29 profile image
Escada29 in reply to Craines

Why did this happen? Were you struggling to cope? And poor care does not sound good either sounds like you have had a terrible time x

Craines profile image
Craines

Yes, really struggling to cope - PSP escalating so quickly and not had much backup. Seems that people just don't understand. No excuse for the poor care M is having at the moment. In care home where bells are not answered and this morning unshaven and looked unwashed. I also struggled to get him to the toilet and discovered he did not have continence pad etc. I will have to try and talk to someone about this tomorrow.

in reply to Craines

I am sorry to hear of your dreadful experience. In case you don,t know, we live in southern Turkey and are entirely self financing. We just have pensions from UK but can afford help here and my daughter moved in on 1 September to help me with care and she is now looking after C while I am away. From phone calls I've had they are getting along fine without me and I am certainly enjoying my break though it is pouring down today and forecast is for rain till I return home on Thursday night. Still that means temp has risen and whatever the weather throws at me I shall continue to enjoy the respite. Slept ten hpurs again last night

Katiebow profile image
Katiebow

Sounds like a wonderful break and restorer, enjoy it to the full. Must be lovely having someone you love and trust to look after C, must make a huge difference to how you are able to enjoy your break. Love Kate xx

ketchupman profile image
ketchupman

Love all the posts. Question though ... what the heck is a hammam? Something similar to bacon? :-)

Ketchupman

abirke profile image
abirke in reply to ketchupman

I'm with Km! We ignorant Americans (no offense Km) don't know much past our borders...Sounds like a hot springs managed by the govt or if in America some big corporation .

At any rate, being able to have some alone time; confident that your mate is well taken care of; sleeping; being able to think deeper thoughts than "How to clean that mess up"; and just being around people who talk sounds so refreshing! I am so happy for you and thank you for sharing...though like someone else said, don't spend too much time on this site!

PS we had about 8-12 inches (20-30 cm) of rain in a couple of days. Some of Missouri is still under water and a tsunami like engorgement of water is heading downstream from the Mississippi, Illinois and other rivers all flowing to the gulf of Mexico.....It's been a week(?) and some people are still waiting for the flash floods....incredible!

I am wondering if that HUGE storm isn't part of your huge storm...I doubt it...but it was big!

Enjoy the next 4 days (It's Monday here). Run in the rain, make snow angels , or happily get scrubbed up and dipped by the ladies of the Hammam(?)

Thinking of you,

AVB

ketchupman profile image
ketchupman

Haha. After I signed off, I googled hammam and saw where it's a Turkish bath. If it's anything like their Turkish Toilet, I would want no part of it. I had to go to India on business a few years ago, and once I got off the airplane in Mumbai, I headed for the bathroom, only to find a stall with a hole in the floor. I thought it was so funny, I took a pic of it with my phone. About that same time, an Indian fella came in and saw me taking the pic. He just shook his head. I'm sure he was thinking "crazy American". Which of course, I am. :-) Those were 3 long weeks. Not being able to drink their water, no ice cubes, no steaks or hamburgers, and no toilet paper (fortunately I packed my own). But hey! I lost 10 pounds and gained a greater appreciation for Home Sweet Home!

Ketchupman

NannaB profile image
NannaB in reply to ketchupman

Did you have frogs and lizards near your hole in the ground, running/hopping round your feet as you did what you had to? The pension we stayed in whilst in Turkey was very modern, it even had a shower....a hose pipe attached to the wall near the hole in the ground. The hole even had porcelain round it. You're right, it does make you appreciate home sweet home. It was a holiday of a lifetime though so we are pleased we did it.

X

So no need for me to explain hammam. I actually dıdn't get to the hotel hammam just swam ın ındoor pool instead. Now I am slowly getting ready for bed for the last time here, fly up to İstanbul tomorrow afternoon. I could stay here much longer as I seem to relax more as each day goes by. Today I had naps after breakfast and agaın after lunch and that was after 9.5 hours sleep last nıght. Meanwhile all is well at home, despıute beıng on holiday İ am phonıng home on a regular basis.

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