I take care of my aunt bev and i do it alone why does every one want me to do the humaine thing and well they didnt come out and say it but i know what the hell they are saying KILL HER help her let go who wants to live like that well guess what MY AUNT BEV DOES maybe not exsacly like that and I DO well putting drugs in her peg tube is not an option for me F--- O--. I will do what no one else wants me to do my aunt bev still has her mind about her and if she wanted to die i mean really die well i am going to do what she ask its her life, well not really i would have to trick her on that one it is not an option for me so as long as i am here if that day ever comes ill just tell her to suck it up. and the next person that tell me that does not want to be to close i am sick and tired of everyone putting their two cents in well none of them are here helping or have been.
What happened I guess I must have been super tired because I did not hear her blow her whistle (so I can hear her call me since she cant yell for me) so she calls her kung fuu or what ever instructor now mind you he just found out shes been sick for the last 15 years yesterday well he rushes out here only to see me walking down the hall i didnt tell bev what he said to me the day before because she just wanted to see if he would come out and work her legs and help make them stronger , so he calls me in the ketchen while his wife does what i thought was a massage and tries to discuss the humaine thing to do would be to help her go and you know what I said F--- off.
Then his wife came to the ketchen cometo find out she was doing what she called the boots off (some chant to help you go) i had already made up my mind I was not calling them for her anymore but know she did and I finally told her what they said to me and i asked is that what you want AND SHE SAID NO. mind you these were her friends for 40 plus years.SHE DOES NOT WANT TO GO. SO F--- O--
SORRY THIS IS THE ONLY PLACE I CAN VENT AND ITS NOT TAKEN THE WORNG WAY AND I AM SORRY FOR THE BAD LANGUAGE SOMETIMES , OK A LOT I CAN CUSS LIKE A SALIOR.
HUGS TO ALL
Written by
kryste
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Hi, on this page, you never need to apologise! Even Mother Theresa, would swear, if she was looking after someone 24/7, with PSP,!!
Surely in the US, it's just as illegal to "let someone go" as it is here in the UK! Not sure how chanting, will make someone pass over, or is it the only way to get away from these dreadful people? I think you were well within your rights to politely(!!!!) send them on their way. Perhaps it should have been under police escort for attempted murder!!!!
Cheer up, hope you feel better for your venting, that's what we are all here for, to listen and try and pick each other up! There are lots that cross my doorway, that I would love to tell them their fortune, but, these are people, who are meant to be trying to get me help, so I have to TRY to be nice and humble and so very very grateful. My tongue is so sore at times!!!!
Thanks heady i do feel better it only takes a few min to let things go for me got to many things to do to spend to much time on unimportant things hope things are going well for you
hi Kryste. Sorry you had such a bad day. Glad to hear that you sent them packing. Look at the bright side, there are plenty of nice people around. I'm sure some of them will turn up at your doorstep. Lots of love maddy xx
Vent away. We all feel like doing it at times. Can your Aunt Bev still talk? Did she phone the Kung fu couple? That's brilliant if she did. My hubby hasn't been able to put two words together for ages. She is amazing if she has had PSP for 15 years. You are obviously looking after her very well. If she can still talk, next time someone makes the suggestion, tell them to ask her if she wants to go. No one has ever suggested it to me but when they were discussing Dignitas on TV, I asked my hubby if he ever felt he wanted to end it all and his thumb went down.
Same reply from M saw the programme and recently a local councillor went there because he had terminal cancer and did not want family to suffer watching him and local press had a whole lot of his justification, M was not happy and I think she muttered something like "wimp" but then she was always blunt. May be she will change at very end but for now she wants to live another day.
There is not much more to say that Heady NannaB and Maddy hasven't already said. I am glad you have this site to vent on. I must agree with NannaB that your auntie has quite the stamina! 15 Years! That is something....sounds like she got plenty of time to make new friends.
One things for sure, she sure has a wonderful niece!(?) I'm afraid if it were left up to anyone but me, my husband may be sooner on his way to gloryland than he is now. You go ahead and vent and rest assured you are doing the RIGHT THING for your auntie! keep on keepin on, friend...
AVB
And who is he that will harm you, if you be followers of that which is good?
I Peter 3:13
And let us not be weary in well-doing: for in due season we shall reap, if we faint not.
Thanks I will it sure seems like all the people who dont spend every day with her have something to say sure would be nice if just one of them would say hay krys is there any way i can help you. Now that would be something.
u hav e hit on a difficult subject which has been raised a couple of times on the forum
i should really like to go to SWITZERLAND which is the nearest country to the UK where this is legal but it si v costly and i am unsure about who would go with me =- the journey is not easy and the people i have mentioned ti to would not like me to do it .....i can still talk a little but my voice i s v quiet and no one can unde stand me in a room full of people like Parkinsons meetings where i go every other WED AND THE CHOIR WHICH MEETS EVERY WEEK EXCPT THE 1ST WED OF HTE MONTH/
SO IT HAS BEEN PARKINSONS LOCAL MEETING TODAY AND TOMORRWO IS THE PSP YING LOCAL IN LIVERPOOL WHERE PEOPLE OD LISTEN BUT ,MY VOICE I S TOO QUIET 2 BE HEARD HTERE AS WELL SO SOEMONE ELSE HAS TO TALK ON MY BEHALF\
I ASK THE QUESTION: CAN AUNT BEV STILL SAY THE ODD WORD RO TWO COS THAT IS GREAT IF SHE CAN...........
I AM THINKING THAT WHEN MY SPEECH HAS GONE AND I AM DOUBLY INCONTINENT WOULD BE THE T IME FOR ME OT GO INTO A HOME (A CAFRE HOME) WJHICH WOUDL NOT BE TOO COSTLY AS THE COST S WOULD BEMAINLY MET BY THE GOVT. HERE ( THE NHS IN PRACTICE)
LOL JILL
I HAVE NO CHILDREN OR CLOSE FAMILU TO DISCUSS THIS WITH APART F,M MY COUSINS WHO LIVE ON THE OTHER SIDE OF THE C OUNTRY AND 1 FO THEM WOUDL PROB. BE AGAINST IT AS SHE IS A"GOOD CHRISTIAN"
Hi Gill, I really do hope that the uk changes it's mind on assisted dying so that people with this horrible disease have choices about the end of their life. Travelling abroad means the decision has to be made much much to early, so unfair. A few weeks ago Ben said that if he had motor neurone disease he would like to go to Dignitas, I was so upset because he has been denial and hasn't wanted to know the progress of PSP and won't talk about it. He said 'I hate being me" and do sometimes wonder what route he would choose if he understood more about the disease. I don't know how to broach the subject of what his wishes are and so far nobody else has either. I think I know what he would want but he has to be the one to write his wishes down. Oh dear what a predicament.
I know some things are real hard but just do it talk to him about everyting even if he does not want to hear it he needs to wake up this PSP is no joke and until they come up with a cure it just gets worse some day will come and he might not be as lucky as aunt bev where she can stil communicate she just happens to have a rare, case of this rare diease and still communicate with me. so no matter how hard it is for you just put your self in thier shes it so sucks to be them. Things get much easier after you talk to him I know once I just started talking to my aunt even though we both cryed a lot when I did at least I knew exsacly what she wanted and felt.
Hi Jill, I know my husband doesn't want to go to Switzerland but I can understand how you feel. A few years ago I spent 8 nights in hospital on morphine in horrendous pain. If I had the means, I would have ended it all then. I prayed I would fall unconscious and die. So I can understand a bit how desperate one can feel. I think it is amazing how you can still type. C has always been an unwilling one finger typist before PSP so once he left work he never tried. I've let him have a go at the talking programs you can download but he isn't interested. Have you tried any? They can turn your words into speech.
Easy for me to say but try and stay strong Jill. It's good you can still get to the choir and different groups. Meeting others and having a laugh is so important and gives you a reason to get out.
Keep posting. It lifts my spirit when I read a post from you and our other friends with PSP. C doesn't speak but you talk to us.
Hi Jill, I get the feeling, you don't feel wanted or needed anymore! WE NEED YOU,!!! Your contribution to this site, for all us Carers, is invaluable! YOU are making such a difference to fellow sufferers of PSP! I know that's not helping you get through the day, but if it's any consolation, your comments, helps me understand and try to be a bit more patience with S!
I think we all understand where you are coming from, I often think the same for S, but we can't do it. This is really where our saying, "ONE DAY AT A TIME" comes into its own! Today, you can still express yourself, today, you can go to sing in your choir, enjoy a glass of wine with your partner. ENJOY THEM TODAY, let tomorrow take care of itself!!!
Jill I wish you were here I would make sure things were ok or at least close enough to come see you. You and Aunt Bev would be a Hoot. I am sorry things are this way my heart goes out to. I think my aunt can still talk so well is because even though she get an attitude and trys to say never mind I keep making her repeat her sentence till I can understand what she saying but sometimes I just mess with her and say what , what , what , she either flips me off or gets it out, some times I get the midddle finger when she realizes I am just messing with her. But we laugh.
I totally understand your feelings Jill....however you never know you might help along your rugged way. I have epilepsy...once a month come rain or shine I am seizing! Now being a teacher and doing that can be most disconcerting for my students. I do try to be discreet and when I felt an aura, I would steal away into somewhere private. When I was young, I bounced back pretty easily. anyway I say all this to tell you that one of my parents who child has epilepsy thanked me for my resiliency. As children can be mean the boy was being teased and he said he didn't want to live . But when he found out that I had epilepsy....he forged on and said he wanted to be a special ed teacher so that he could help kids who have the disorder like him or even worse than he did. Now granted he was in 5 or 6 grade.....but hopefully he has not allowed epilepsy to control his life...it's just a part of his/ our lives and we have to keep on, keepin on girl......I know the villainous PSP but please also know that you may be you are helping others find strength and forge on....
Finding Strength in such a ones as Jill, Peter, Shasha,...Thank You Guys,
I APPRECIATE IT = WHEN MY PARTNER SHOUTS ATME THEN LEAVS THE ROOMA DN SAYS HE DOES NT WANT TO TALKTO EM I QTHINK THE TIEM HAS COEM FOR ME TO LEAV E AND 'GO TO SWITZERLAND" HE DID TI AGAIN WHEN I GOT IN THSI AFTERNOON ) HE COLLECTED ME FM THE HAIRDRESSERS AFTER A LONGISH LOCLA MEETING WHICH I WENT TO WIHT MHY CARER - A PSP MEETING IN LIVERPOOL =- WHICH PEOPLE THERE UNDERSTAND WHERE I AM COMINVG F M AND DO NTO JUDGE ME AND SAY I AM STUPID LIKE HE DOES _`(MIANLY COS I WOUDL NTO WAIT 5 MINS 4 HIM OT LET EM IONAND GO TO TH E TOILET WHICH I COUDL NOT WAIT THA T AMGT OF TIEM FOR) ADN SO ANOTHER EVENINBG SI RUIBNED BY ME\
LOL JILL
HUFGS AND XXX TO YOU ALL!
AND I TIS BONFIRE NGIHT AND A NGIHT OT LOCK TH E CAT FLAP AND KEEP THE BOY IN (1 NIGHT OF THE YEAR)
Well maybe you need to let that man of yours on this site! He sounds frustrated and maybe confused...If he is like me, The first time I realised that B was doing these things (falling, breaking everything) I knew he was doing it on purpose...against me some sort of passive agressive frickin behavior ohhhh I was so mad!!!!!
It was this site and and getting out of denial and anger mode ( and truly, God's love) that helped me understand, (well at least not get all pissy at) B had something he could not control!!!! Send your beau on over maybe he just needs us kids to play with awhile ......
Hi Kryste vent away this is only place I think where others understand the curse of PSP/CBD and the unthinking so called professionals. You need to de-stress somehow.
Totally agree. A palliative care doctor wanted me to agree to take my aunt off all fluid (Her kidneys were working fine so it was not a medical issue other than a quick death). I have been dehydrated and it is painful and anyway I did not want to kill her through dehydration. She was unconscious due to a stroke or medication - not sure which. Told my sister and I that she was brain dead and got annoyed when we refused to take her off all fluid. I checked to see what fluid amount he had her on at the time. It was one litre a day which was not much but I accepted it. The next night I arrived to find he had reduced it without consultation to 250mls a day. I blew up and demanded it be reinstated to what it was. My aunt came to 5 days later and was not brain dead. Keep doing what you are doing. You are not alone.
Man I would have been so pissed that is a perfect example of you just never know , so dont tell me there not in there because I believe most of the time they are good for you holding your ground I bet your aunt is happy man that just gives me the chills thinking of what she must have went through.
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Stimulation for people with PSP?
