New Years resolution aborted!!

[Debbieann]

Was determined to pick myself up and dust myself down!! An stop feeling sorry for myself. All gone belly up already!!

And I love reading everyone's messages (so many of them make me cry!!) don't know whether that's good or bad!!!!

Xxx

[easterncedar]

My resolution, renewed twice a day now, is to get through one morning or one night without losing it. And then I'd like to try for two in a row and build from there. Have yet to get the first one. My guy is a saint, which makes it better AND worse, as you might imagine. Hang on, Debbieann. We are all in this together. Ec

[jillannf6 in reply to easterncedar]

we are all in this together!!

quell s ia d EC

;LOL JILL

XXXX

[easterncedar in reply to jillannf6]

And I would be so lost without you!!! Love, ec

[NannaB]

I don't make resolutions. They are always broken before the end of January, usually the first week of January actually, and then I feel I've failed yet again.

I hope this will make you laugh. Last night we watched Call the Midwife. It was set in the 50s when formula baby milk was being promoted but one nun was insisting that breast was best.

After the programme, I was thinking it about time I gave Colin another drink and said to him, not expecting an answer, "Do you want a drink from the cup or the breast". I meant to say the cup or the PEG. I could see from his face and his humming laugh which one he would prefer. He had to do with the PEG.

I hope this week doesn't have many belly up moments.

X

[Debbieann in reply to NannaB]

Ha ha made me laugh!! Xx

[Amilazy in reply to NannaB]

Thanks NannaB, nice bit of humour this morning, definitely need that this morning.

Tim

[Katiebow in reply to NannaB]

Freudian slip there NannaB much to Colin's delight. How is the PEG feeding and hoist working out? Xxx

[jillannf6 in reply to NannaB]

JHI NANNA B

THA TJMAD E ME LAUGH TOO

LONG MA YOUR WONDERUL JOKES CONTINEU

LOL JILL\

XXXXXX

[Escada29 in reply to NannaB]

Lol that made me giggle, we watched Call the Midwife too and before that we watched a Catherine Cookson film and just as I was getting deep into this film guess what he starts playing with the remote control and yes I did shout!!!!!

He has gone up to Queens Square today got picked up in a little ambulance car so have been running around shopping I feel exhausted am getting too old and Im only 47!!!!!!

[Debbieann in reply to Escada29]

i thought I was young to be doing this but I'm old compared to you!! Xx

[abirke in reply to Escada29]

Yah I thought I was too young...PSP? how old is your mate?

AVB

[Debbieann in reply to abirke]

I'm 56, but my husband 67, going on 87, cos of this PSP!, xx

[abirke in reply to NannaB]

Hahaha.....Oh Colin, you still got it in you......Well you know those Fruedian slips may mean your wife has still got in her !!!!hahaha!!!

[Heady in reply to NannaB]

Love it NannaB! Bet Colin would have as well!!!

Lots of love

Heady

[Amilazy]

Debbieann do not make resolutions other than day to day fight to keep yourself mentally active and aware as well as physically fit so you can do your best for your partner. It is fine to cry (even I (a man) do it occaisional in the depths of a night) it releases some of the pent up frustrations and puts me back on a bit of a level keel. It also makes me discuss M care matters with Carers and nurses.

Best wishes Tim

[cabbagecottage]

lol good knew Bev . John had a good day yesterday Apart from switching off after breakfast and then dinner for two hours stayed pretty alert and managed to eat puréed and talk .

He switched off aroun 9 pm , called me at three am . Couldn't clear his throat or speak . I went back to bed and get up again at seven as carers arrived . ,couldn't get any response , they stayed an hour to wait . Still no response . Can't even give him his meds , already twohours behind now .

I generally have the same it at least one of the two carers each day so they have become used to how he can be . If I wasn't awake and different ones arrived and they couldn't get any response they would probably ring 999 """"!!!

That's the last thing I want .

Can't plan a thing can you .

Johns head normally tilts to the left hand side , and pulls him over , I notice though if he had had a bad night and become frozen ore more unresponsive it will often tilt to the opposite side . Has anyone else noticed this .

[ketchupman in reply to cabbagecottage]

My wife's head mostly tilts straight down, but sometimes to the right. But this mostly happens while I have her sitting in the wheelchair (on the few times we are able to go out). But while in her hospital bed or in her tilt recliner chair, her heads doesn't tilt much, due to the angle I have them set. The head tilting only started a few months ago and as a leader of PSP support groups, I've seen this in patients who are much further along with the disease. Which scares me to death when I see her head hanging down.

Stay strong.

Ketchupman

[cabbagecottage in reply to ketchupman]

John hasn't been outside for two years . , a physio visited the other day and is going to try a neck brace but I am not holding my breath that it will help or be even suitable for him ..

I won't give in though keep trying . The head is heavy isn't it so it pulls him right over . He doesn't usually xomplain that it's hurting , but there again I rarely hear him complain .

[abirke in reply to ketchupman]

I'm sorry Dan. It's been this site that has enlightened me to the tube and suction machine. So I can imagine that other areas of PSP will be revealed here as well.....I don't know if it makes for longer mourning process; Or less of a shock !

AVB

[ketchupman in reply to abirke]

Since Kim is so young, currently 54, it was an easier decision for us. Her neurologist wanted her to enlist hospice in July 2014. But instead we had the PEG put in on 8/5/2014. While I can't say these last 18 months have been a picnic for either one of us or our families, we've definitely had some great times. Kim has gotten to see our 2nd granddaughter grow up (who was born at the same hospital and came home the day of the tube insertion). And we've been on 1 beach vacation, many trips to our lakehouse, and 2 Christmases. I've never regretted the decision of the PEG. We enrolled in hospice last month, but at times I think it was premature. I had lowered her feed and eliminated all PD drugs, per hospice's guidance. But a few weeks ago, I increased the feed back to 4 cans a day and started her back on most of her PD drugs (Sinemet and Artane). And NOW, praise God, she's back to where we were several months ago. Talking some (well, whispering) and able to walk around the house with our arms locked around the waist.

Continue to be strong. Keep on praying and ask others to pray for you both. That's what I did and I'm sure that's a big part of her improvement and my strength to carry on.

Ketchupman

[easterncedar in reply to ketchupman]

So glad for your good news, Ketchupman. You are a fighter, for sure!

[Katiebow]

Don't beat yourself up, after all you're only human. X

[jillannf6]

HOI I ALAYS MAKE THE SAME RESP;IUTION IE NTO OT THROW THING SAS IT D RIVE SMHY PARTNER MAD AMD IT LASTS ABOUT A EWEEK THEN I STAT RT AGIAN

TROWOING MYSE;F A SWEELL OUT OF HTE WHEELCHAIR2

SO LONG MAY THE RESOLUTIONS CONTINUE

LOL JIUL

XXX

[Yvonneandgeorge]

NannaB you always make me laugh xxxxx

[jzygirl]

Well i must be a goody two shoes i said i would only have one glass of wine each night. Yes my friend bought me a very big wine glass for Christmas. Love to you all and stay strong. Janexx

[mthteach in reply to jzygirl]

Checking in with this group, checking facebook, and email is my relaxation now days. And, yes, I have my one big glass of wine a night. If it keeps me sane for one more day, then I have done well.

[goldcap in reply to jzygirl]

Where Do I get me one of those?!!