Hello everyone.... I haven't written in a while, I have been so busy,tired and very frustrated. Back in May I moved my family to go live with my mom who has been caring for my father for many years. It was getting to much for her with all the falls and care he required. Since I moved in Dad has been attending adult day care three days a week to give mom a break while I am at work. It is very expenses and they are private paying but it's a break for her. It is very hard taking care of him, like I said he fall constantly and has required stitches at times no broken bones yet. He chockes all the time on drinks or food. He is in content of urine and feces. We try putting on external male cathers but he pulls them off, two loads of wash almost every day. He is up most of the night trying to get out of hospital bed,which means no one gets proper sleep. The worst is that he is getting agrassive with us and at times his van driver that takes him to day care. He is on seroquel,depakote and a prn Ativan to help him relax, none of theses meds are helping and he seems to be getting more upset. When I take him to see his geriatric psychiatrist he seems like he doesn't know what to do. What the hell are we seeing him for? I am at my wits ends, I am so stressed out and go to bed crying most of the night. We all need more help caring for loved ones with PSP and doctors that understand this desease better. I am sure most of you must feel alone as I have been for a long time. Sorry for complaining but I just need to vent to people who understand and are going thru the same thing. Take care and I will let you know how it's going. Mconnie
STRESSED AND FUSTRATED: Hello everyone.... I... - PSP Association
STRESSED AND FUSTRATED
Sorry Mconnie, but there hasn't been a doctor invented yet, that cares! Much less knows about PSP! Why should they care, that you are constantly clearing up "pee". Like I have to now, when he has finished in the loo! Why is it always at bed time, when you are totally worn out, that the "accidents" happen! I am so fed up with this bloody disease. Another night of going to bed wound up. How can I sleep like that? How can I care for S tomorrow, without sleep? We all feel alone, because we ARE!!!! Who is here to help, no one. Who can I ring to moan, no one. Without you and all the rest on this site, I would not be able to reach tomorrow, much less care for S!!!
Lots of love
Heady
Mconnie we are all going through this I agree with Heady, it is never ending cleaning up pee, I go around with a mop bucket, feel like an unpaid cleaner, feeling really bad, because I feel like this, but I feel like I am in a black tunnel at times. Doctors don't care they don't even bother to read up about PSP.
Last night I was so tired and George had an accident again, I got so upset, he was laughing, and I know it is the PSP , but it is so frustrating, I could not sleep last night either, I was awake until 2.30, then up at 8 feel so tired, I hate night time so much.
Mconnie maybe you need to get social worker involved, and see what help you can get, we also have to pay for everything, it is expensive. Oh well another day tommorow, district nurse coming about CHC, not sure if is another assessment? This government is saving millions with us caring for our partner, maybe one of them shop come and live with us for a week.
Yvonne xxxxxx
yvonne OH LORD YOU HAVE MADE THE NIGHT TO LONG does anybody know who wrote that mates because its very true don't you think peter jones queensland Australia psp sufferer chin up Yvonne
I CARE HEADY I CARE ABOUT ALL OF YOU THAT HAVE TO GO THROUGH THIS AND IM SORRY THAT YOU DO . BUT AS YOU SAY MATE DOES ANYBODY LISTEN OUT THERE I DOUBT IT BECAUSE WHEN THINGS WERE ALRIGHT FOR YOU NOT JUST YOU MATE;;;;;;;;; DID YOU WANT TO SPEND YOUR TIME LISTENING TO SOMEONE TELLING YOU HOW ILL THEY WERE AND HOW MUCH OF A HARD TIME THEY WERE HAVING NO!!!!!!!!! IVE SAID THIS BEFORE A CARERS JOB IS A LONELY OLD LIFE AND A THANKLESS JOB AND IF ANYONE HAD TO DO IT IN THE GOVERMENT WELL I SHUDDER TO THINK SO ITS A GOOD JOB THAT THERE ARE PEOPLE AROUND LIKE YOU AND OUR CARERS THAT ARE PREPARED TO LOOK AFTER US WHO GET THIS DISEASE FOR BETTER OR FOR WORSE THATS A JOKE THINGS COULDNT BE MUCH WORSE COULD THEY MATE BUT SOLDIER ON MATEY PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER
Sorry Peter Jones! I know I go on a bit. But you are right. I expect we have all complained about all the parking spaces for the disabled. The toilet not in use, when there is a huge queue for the rest. Now I complain the opposite way. The thoughtless, parking in our spots. Some young man, thinking it's fine to use the disabled loo. I suppose basically, we are all moaners, with or without illness. I will try and take on board, what you have said. Thanks for the support.
Lots of love
Heady
Wow. Interesting.
I have never heard of leaving a handicap loo available just in case a wheelchair comes in! It's not like a parking space that is occupied for hours. In the US anyone can use the loo, it is mandated to be there so a disabled person is facilitated. There is no expectation that it can't be used by everyone else.
Heady not only thoughtless parking but also inconsiderate parking I have only recently got a wheelchair adapted vehicle with a ramp for the big wheelchair. I need a good 3mt behind the car. Number of idiots who park up close. I got through to one the other day threaten to drop the ramp on his nice BMW bonnet he quickly got out of the way. What about the disabled loos where wheelchair cannot fit or rails too far from loo sides.
Sorry to blow off like that
Best wishes Tim
Wouldn't you like to see some of these, so called experts, that design the disgusting facilities that we have to put up, struggle with their loved ones. Like Supermarkets, with their extremely useful trolley, that's fits on to a wheel chair, but it's too wide to go down the aisles!!!!
Lots of love
Heady
heady it doesn't matter mate you are entitled to have your moan mate it does you good it gets things out of your system mate you do not have to opologise to me mate I know what you carers go through so keep your chin up and best foot forward mate peter jones queensland Australia psp sufferer
Thanks Peter, you ALWAYS know exactly the right thing to say to me. Be it a pat on the head, boot up the backside or just a simple hug. I really appreciate that.
Lots of love
Heady
hi heady thanks for your mail mate it was very nice of you to say those things you didn't have to you know mate but thanks
anyway matey =now lets get down to business how are you coping now with your sister to give you a hand matey is she still with you or am I completely out of touch with that mate as sometimes i do not get the time to look at all the things going on here strange as it may seem by the time I get up
and they shower me at 8am to 8 30 am then I usually take my better half to where she wants to go then back home have a bite of lunch and a hr to have a kip if I can get one the day is almost over oh and nurse my bruises from the falls I have had the day before mate so its not all peaches and cream for me but a lot easier than the carers job even though I know theres no light at the end of the tunnel for me well heady me old sergeant major BLIMEY AND YOUR SISTER TO CRICKEY WHAT A COMBINATION only joking mate take care goodnight from me have a great day today and tomorrow and always peter jones queensland Australia psp sufferer
Oh yeah, me and my sister, together, the family are definitely frightened of us both! Separately we are pussy cats, but don't cross us!!!
Today, so far, is quite good. Just got past our first assessment, so we can sent for the next assessment, so they can then agree, we need assessing for continuing funding and be referred to the assessment panel for our assessment!!!!!b I did miss out lots of other assessing in between, didn't want to bore you!!!
Lots of love
Heady
I have been there and it is exhausting! I was fed up of being on my knees cleaning the floor. A turning point came when I got the Continence nurse to come. She advised us and eventually, we decided that Convenes were best. They have meant less washing, and more going out in the wheelchair without worrying about accidents. They take a bit of getting used to and I almost gave up on them. Using proper soap for washing and paper towels for drying changed all that. No bottles in the night any more! They are provided by the NHS. hope this is helpful.
I am glad you know this sight. There are some good resources CurePSP.org is one of them that has a kit that will help fill in some gaps or many for the drs. And uninterrupted sleep I'ts like having a colicky baby....every night for 4 hours trying to get him back to sleep. he finally does and the sun is already rising. And the day begins without yesterday never really ending.
Get some sleep where you can take the help where it's offered and keep a good stiff upper lip!
AVB
hi mrs avb well here I am again as promised well matey I am 1st generation Australian so we never had nobody come here in chains well we might have done I have never really looked it up it would not surprise me '''' then I have my sons and there kids and then again I have 6 great gran children who are all scrumptious little kids whom I love dearly and we are very lucky cos we get to see them a fair amount I used to take them into my magic room and show them some tricks until they wore me out but they are all lovely children nice natures and the ages range from
7 months up to 6 years old oh to be young again about 40 would do me I think mate what about yourself and knowing what I know now which is very little well mrs avb regards to b for me tell him to hang in there
goodnight to you mate take care of yourself and b dont let it get you down 'mate peter jones queensland Australia psp sufferer
Oh dear, nobody should have to face this disease without someone in the medical world looking out for them. It makes such a difference if you feel as if someone is one your side and watching for signs that a carer is struggling and needs support. As Peter says friends and family don't want to keep hearing you going on about the illness all of the time. I am always apologising for talking about it as it is what dominates most of our life and Ben's condition isn't very advanced. I feel for you and dread what is to come. Take care and I hope you get some support soon.
Hello Mconnie... also Heady and Yvonneandgeorge..
It really is time to look at a home care. Your father MIGHT have some dementia, or it might be his frustration, totally understandable. But you have to look at survival for your mum too.
If you can get your father into a home, that doesn't mean that you can't still watch over him and protect him. Maybe you can bring him home for visits every week to ease the way. There is no point in killing yourselves as that is no help to your dad. I know it's hard, but it sounds like it is time.
I'm sure you have researched this illness. If your doc is no help, move on to the sector involving geriatrics, more specialised.
Your family needs helps now. You will get over any feelings of guilt, and hopefully you and your mum will regain mental and physical strength to cope. This is a big illness and to get through you need a lot of help.
I don't know where you live, but it really does sound like your dad needs to be in care, which in turn gives you care. And makes you stronger to give him your best quality care back.
If the doc fobs you off, then tell him/her to pass you on the help that knows more.
let me know how you get on. x
Hi mconnie. I asked my son about the meds as a mental health pharmacist he deals with a lot of dementia cases but he is concerned that the first 2 meds you mention are for bi-polar patients, not usually for dementia and nothing for PSP. The prn one is for sleep as required. Agree with some comments above about inconsiderate Drs it took a few attempts to get one who is competent and listens, also admits not much can be done but to keep patient comfortable.
Best wishes Tim
Thank you so much for checking into meds. I know there are for bipolar but when dad had a break down of agitation and trying to assault mom due to PSP,He was him phyc unit for two weeks and was put on seroquel and dapokote for agation and it seemed to work but now nothing seems to work. Had a very bad day again with him being very restless and at times agitated. He will see doctor on Thursday, let see what he suggested. I have been on vacation for two weeks but it has been hell as I am stuck at home to help my poor mother. I really feel bad for my 10 year old daughter who as been very understanding but it is not right. Any meds that could help him calm thru day? I need all the help I can get. Thank you in advance.
Hi if he has early/mid stage PSP you might find a levodopa med (sinemet or madopar) may help with with apathy and stiffness. It is a Parkinson med but seems to help but if side effects such as twitching or uncontrolled limb movements start ease off the med. if poor sleep use your PRN drug as required.
I assume you are not in UK, but by the sound of it, you need to get some professional care for your parents to give you chance to look after your children and relax so you can continue. If you are in UK I would point you to PSPA in U.S. try CurePSP..com.
Best Wishes Tim
The hardest decision
