Brian has been out of hospital ten days after being admitted with a chest infection and he has got another one so he is back on antibiotics. I feel so cross angry and upset also frustrated.
The care service finished yesterday because he was doing so well and we hadn't needed help for a few days. And today he can barely sit up and he can't stand and transfer so they have got to come out tomorrow and reasses him.
I hate to see him suffer with these infections and I am scared that he is not going to get better.
I know I am feeling sorry for myself but this last couple of weeks has has taken the the rose tint off my specs hope I can get it back on before to long. Janexx
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jzygirl
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Sorry to hear that Brian is still so sick. I am also sorry that you are feeling so frazzled. I hope that when the nurses come back that he will continue to get better and you can get some relief. Tale care of you!
Seeing loved ones suffer and feeling helpless that we can't do anything about it, is the most depressing thing. My dad too is being fitted with the peg and is almost in a vegetative state. He can't talk and is sleepy most of the time. It makes us wonder how long long he still needs to suffer and whether he did really deserve any of it. Hope you get enough strength to bear all of it along with Brian. Hugs
Oh Jane, my thoughts and love are with you! Make sure you get your care package back.
Please, please shout and scream here, to release a bit of your stress. Or find a dark room and a punch bag and don't come out until you are totally exhausted! You need lots of help, from any source, please make sure you get it, more important accept it!!!
Brian needs YOU to comfort him, anyone can do the nursing side, but you can't do both!!!
Thank you heady. Care back in place for another 7 days then I might have to look about getting permanent carers in. The only trouble is if he knows what time they coming in he makes such a fuss about getting up or going to bed that 9 out of 10 times he is done before they get here wich defeats the object of having carer's in to help. Janexx
Oh well, perhaps it's time to stop the clocks at home and tell him a different time. That might work a couple of times, then you will have to think of something different. Perhaps everyone here will help with excuses!!! Can't believe nobody will have any. Might sound cruel to some, but we are getting into the realms of "best interests to all concerned"
Hi Jane I know exactly how you feel Jim also has another infection but I have him at home. He can't stand up and complains everyone I try and move him he also has now got pressure sores and I feel life is dealing us a raw deal at the moment and if that's not enough he now makes it difficult to feed him . I just keep my cool and tell my self it not Jim but this horrible illness.
Hope all goes well with Brian my thoughts are with you.
Give Jim a hug and tell him to get better soon. So scary to have the infections so close together. Keep your chin up hun and like me have a rant about things and then get back to doing the wonderful job that your doing Janexx
Hi jz girl my dad was like that and we was told not to give him certain food they said only give them food that had been liquidised and food that has the same texture when u put it in ur mouth to when u swollow and he hasent had one for a while now hope everything goes ok cheers glyder
Jane, I must take issue with Shasha's comment, the inference of which is that whoever allows a PEG to be fitted actually wants their loved one to suffer. What rubbish. My wife decided while she could still speak and write that she wanted a PEG knowing full well that her disease is progressive and things would get worse, as they have. Coincidentally she is currently suffering from a chest infection for the first time, following an anti-flu vaccination (which also gave me trouble but no fever or infection). The PEG itself has been working perfectly for a year now, providing an overnight feed while she is asleep. Many people will say that we are merely postponing the inevitable; the point is, it was her decision. And anyway, that sort of reasoning could lead down dangerous paths.
Take heart, this is just a part of our lives, a privilege - as others have noted in these postings, and our own particular cross.
Christopher I agree a peg is a purely personal decision. We have talked it over and Brian has said it all depends on how he is physically and mentally as he says if the lights are on and nobody is home and he cant do anything then its no peg. But if there is some quality of life then its a yes.
Community matron said there is a lot of chest infections around at the moment so we need to take extra care of our loved ones.
what scares me most is that he had one 22nd sept then he was admitted to hospital on the 4th october now this one diognosed on 19th so thats 3 in a month. Hope your wife gets better soon. Janexx
It certainly is scary, Jane. I lie awake each night listening to my wife's rapid breathing and gurgling and I am frightened because pneumonia appears to be the "killer by proxy" of PSP sufferers.
People in South West France where we live say "bon courage" which means something more solicitous than the simple words say.
I can't decide for my father ... He seems to be aware of what's happening and I don't see any strict refusal. Since I have read that psp patients do make their choices, I am assuming my dad can make his choice and stop eating if he wants to. But thtis gives me a very clear thought. If I suffer I would prefer to go for euthanasia...
Brian has given me his thoughts on a peg he said if the lights are on and nobody home then no peg but if he still got some facilities then yes. I think if I was suffering I would like to go and see my grandson who lives in Switzerland (one way ticket).
I hope things work out for your dad what ever he decides. Janexx
HI JAE I UNDERSTAND WHERE YOU ARE COMING FROM - THE 1WAY TICKET OT SWITZERLAND IS NTO A BAD IDEA IF YOU CNA AFFORD IT - THEY SYA IT COST SABOUT £8000 TO DO IT !
SO UNTIL THEY MAKE IT LEGAL IN THE UK I AM STOPPIGN HERFE FOR NOW\
Jane, You are entitled to feel anyway you like. Many of us have been there and can relate to what you are feeling. Sometimes in the struggle with PSP one gets weary of fighting the disease because everything seems so bad. Let's hope your loved one bounces back. Look on the bright side, there is a great chance he will. He may even rebound to where he was before the infection. He needs you so try to stay positive for him and family. Step back, start over, and go forward. We are here for you and behind you all the way. Hugs, Jimbo
Thanks Jimbo. I am so pleased that we can all come here rant rave and say what is going thru our minds without fear of being condemned as being unfealing or a strange person. As you said whatever thoughts feelings I'm haveing someone else has had them or having them now. Janexx
My husband, Purushottam is slowly recovering from aspirational pneumonia. We go home in 5 days with a PEG, oxygen concentrator because he is not fully recovered,and hence the tracheal tube for oxygen and suction. He is in a total vegetable state. But I hope going home revives him. Feel heartbroken. But as long as there is life there is reason to hope.So like you advised, I am going to start again!
You are quite entitled to feel sorry for yourself and to feel scare and feel frustrated for you both. It is terribly hard to sit back and acknowledge that there is nothing that you can really do as infections always make this diease worse. I would suggest that you have permanent help rather than on a 'when needed basis' as the problem with PSP and CBD is that it is unreliable.Nigel used to go on fairly well for a while and then it was if he fell off a step onto another plateau from which he did not rise. I am so glad that you have this forum to share how you are feeling because unless one has been there one cannot truly understand.
I attach a poem I wrote in 2017: apologies to those of you have been on this forum for a long time as you will have read it before. Take care and good luck. Ali Bee
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.
Those who are 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.
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UTI and suspected chest infections again two plus months
Hospitalized for a urinary tract infection?
Another night of no sleep 
