Having a really bad day today! Been going along nicely for quite a while. S seems fairly stable at the moment( touch wood!), but I turned around today, and hit that very hard wall that somebody erected while I wasn't looking.
What do you do? How on earth do you cope with this rotten evil disease. It's robbed me of my husband and I want him back !!!
Heady
Oh Dear Heady
How we all know where you're coming from. I have been in that place more times than I want to remember.
I don't know how I cope with everything, probably because that's what I have alway done, through a very deprived childhood growing up in South East London, via less than high powered jobs, due in part to a mediocre education ( I am of that generation who was either enpowered or written off by the 11+) then to the very hard slog of bringing up 3 boys. All of it was hard but we just did it.
This is our final battle and we will stand up and be counted, hang on in there Heady
you are surrounded by the warm glow of love.
Kindest regards
Dorothy T
Hi Dorothy, Apart from the South East London bit, it could have been me writing, failed 11+, job I couldn't reach higher in as I didn't have a degree, struggling to bring up 3 boys. I also had a mum who had Altzheimers for 15 years until she died at 90 and then a dad who lived until he was 96, both who I spent a lot of time caring for as well as a full time job. When they were both 88, mum had to go into residential care as I couldn't spend any more time helping. I sent an email to my boss requesting time off to find her a place to stay adding, I needed the time off as I had no desire to become a full time carer. Little did I know then how those words would come back and hit me but love keeps us going.
Take care.
Nanna B
hi nanna b
i did not realise what a hard time you and with your parents and now hyoru husband
life is not fair and never will be tha tis par tot beiegn human i guess
lol Jilll
xxxxx
and heady
hang on in there ti can only be a better day tomorrow
lol Jill
xxxx
Hi Jill, yes, I'm in a lot better place now, thank you. Just been planting a load of flower pots for the garden. S was sound asleep in front of the cricket, so had a couple of hours of peace. Now exhausted! Looking forward to a nice BBQ tonight and a glass of wine!!!
So all is well.
Lots of love
Heady
Hi Jill,
Looking back, I learnt a lot helping my parents and I think it has made me better equipped to look after my hubby.
Thanks for your posts Jill. C rarely speaks and by reading your posts, and those of others with PSP, I think I have a better understanding of what he is going through.
Take care and keep upright.
Nanna B
hi nanna b this is for mr nanna b hows it going mate ok I hope I think you are in good hands with your mrs \\\\ its a road we have to travel im afraid \\but we will get there in the end take care look after yourself and don't forget the sing along with the ukulele mate see yer peter jones queensland Australia psp sufferer
Hi Peter Jones, Queensland Australia,
I read your post to Mr Nanna B and he laughed. I asked him what I should say to you and he said, "I'm fine. Uke tomorrow". Which is good as I'd forgotten. The group come here on the first Monday and 3rd Wednesday of every month and we all play in a pub ( Mr comes too) on the second Tuesday. I forgot it is now June so at 10 am tomorrow morning the fun starts. He also said, "Borde Hill so he wants me to tell you we went to a large stately home on Thursday with 17 acres of beautiful gardens. 24 of us went so plenty of folk to help me. He sits in his chair with his head nearly on his knees so I took my IPad with me, took photo's on the way round and showed him what I was looking at. He could smell the flowers and he put his thumbs up when I asked him if he was having a good time. Someone is ringing me next week about a recliner, electric wheelchair so hope that gets sorted soon.
We hope you are doing OK now after your recent episodes. Take care and thanks for remembering Mr Nanna B.
Mrs Nanna B, Kent, England, wife of PSP sufferer. X
hi nanna b and c thanks for your answer mr c
you want to watch out mate she will have you playing a ukulele in the pub although that would be good wouldn't it a little bit of strumming\\\ well mate hows your day been ok I hope ive had a lot of people from the hospital to see me today its been very hectic and they have all had a paper to look at\\ which all said the same thing talk about a waste of money still I suppose someone got to make money out of it \\\\\
well mate hows your day been ok I hope \\ im sorry I do not know much about kent except they called it the garden of England I went hop picking there as a boy
but I cant for the life of me think of where it was now to much water has gone under the bridge \\well mrs b I think thats it for now \\ please do not feel obligated to answer this em just when mr c has time to have a chat or you have time to type it more to the point will do\\\\ so take care of mr c I know you will\\\\ look after yourselves peter jones queensland Australia psp sufferer
Sorry you're having such a bad day, Heady. I feel for you! How do we all cope? I'm just beginning to accept the idea that it's a good day if there has been no really extra-special disaster in it. The minor disasters just keep coming in a steady stream, and I often feel that it's all I can do to keep my head (and his) above water. I worry that I'm not being alert enough to what's looming, and that I will be responsible for harm coming to my sweetheart. And we have visitors coming and the house is a tip! On we go. Love and peace, Easterncedar
Oh Heady, I'm sure we all feel like you do at times, I've done my share of crying and screaming and I'm just thankful that there are good days as well as the sort you had today. Are you able to get out much on your own or with friends? For 2 and a half years I struggled on alone but then help was offered and now I take everything I can get. I have sitters from Crossroads (UK) twice a week, 9 hours altogether and C goes to the local Hospice for 5 hours every Friday. When Crossroads rang me to ask if I wanted to have more than the original 4 hours a week, I said I didn't want to be greedy as from nothing to 4 hours was brilliant. The woman on the other end of the phone said, " Take whatever you can get. You are devoting your life to your husband and you deserve as much respite as possible. He will be happier if you are relaxed and not stressed." I use the time laughing with friends, learning to paint and play the ukulele, catching up on sleep in the summer house or gardening or as today, hospital visiting and making uninterrupted phone calls.
So Heady, hang on in there. Nothing we can do will make our loved ones physically better but I know that when I come back refreshed, telling C funny things my friends have said or done, showing him paintings I've completed or playing him a tune on the ukulele (very badly), he appears more alert, smiles and does his funny humming laugh. I do hope tomorrow is a better day.
Take care.
Nanna B
Thank you folks! Just what I needed!
We went out tonight for dinner, quiz night at local pub, totally ruined by some silly woman, screaming and shrieking in a drunken stupor, don't mind that, it was the high pitch of her voice,that added to headache, caused by today! What am I turning into!!!
Oh well, bed and sleep, tomorrow will be better!
Lots of love
Heady
well heady it wasn't me who put it there\\\\\\ im very sorry that you are having a hard time of it mate but it will pass as sure as night turns into day mate I know it does not seem like it at the time but we all have days like that when we could scream and shout it would probably make us feel better but the problem remains until they can find something for us
to take \\\\my wife was like that yesterday I have said before I try to help but I
just end up in the way im afraid to say\\ well heady hope you have a better time of it now or from now on take care mate peter jones queensland Australia psp sufferer im sorry I cant be of more help to you\\
Peter you,re still there ! when I opened my mail I thought it was you who ran into a wall ,I thought the grocer had snuck into your house during the night and repaid you for busting up his produce,regards,Rollie
hi rollie not guilty your honour I replied quick smart I have been to crook with this chest pneumonia and a few bits and pieces to even dream of it mate hows it going by the way \\\all good I hope
and no major setbacks for you and mrs rollie I hope not
well mates im will say see yer take care until next time look after yourselves peter jones queensland Australia psp sufferer and a good hospital patient \\\\\\\\\\ but glad top be out of there
Best wishes Peter,you should keep avelox on hand,Madeline had many bouts but avelox daily since last november and we have stayed out of hospital...knock on wood,,take care,Rollie
thanks for reply rollie and madeline I have never heard of avelox mates what is it and what does it do \\ I shall make enquires at my local chemist shop to see if they know what it is or better still if they stock it \\\ thats my sisters middle name madeleine spelt different but pronounced the same way I should think a nice name & a bit unusual as well ===== well good people the people from the hospital have just gone so I am fresh as a daisy all showered and done like a dogs dinner as they say the occupational therapist has just left as well so now we have =no one until Monday that's great \\\ then we have four people coming \\and a bloke to raise my chair up so this poor old bloke can get out of it so see yer mates take care thanks for info peter jones queensland Australia psp sufferer
Hi Peter..It,s a strong antibiotic...maybe it,s much too soon for you to use,yes Peter,Madeline is a common name down this way,have a great day ,Rollie
hi rollie thanks for that mate I am on antibiotics at the moment into my second lot of pill popping I don't for the life of me see why they give you pills the sise of a mini submarine when you have a swallowing problem\\ perhaps its to finish you off quicker to save them to, much trouble take care rollie and madeline peter jones queensland Australia psp sufferer sorry about the word sise but the old puter is just hanging in there like me
Dear Heady -
What do I do - Try to forget my attempts to stop the home being a demolition site -like the work with bedroom doors, back door, front door, bathroom and hall door re-framed, re-hinged, re-glued, re-painted, re-handled. The walls that have been refilled and repainted washed, repainted and repainted. Carpets replaced and replaced and floor tiles and wall tiles replaced and replaced. Curtain rails removed, replaced, and replaced. Lounge suite - cleaned, re-cleaned, re-cleaned, re-cleaned and then replaced, replaced, replaced. Kitchen cupboards, top broken, doors re-hinged, re-hinged, re-hinged. Dining chairs replaced, replaced, replaced. Fridge replaced.
TAKE NOTE - Next life time I will be reincarnated to live in tropical paradise on sandy beach with an abundance of fresh wild foods on call and be in touch with nature... No cooling or heating or refrigeration required, No clothing or bedding to wash - After all with one string bikini ocean cleaned what more does a girl need....
AHHH - what was that you did - stop shaking me - I am not - I wasn't dreaming , I wasn't!! .... Was I ???
Regards, Alana - Western Australia
Oh Heady, this did make me laugh.....sorry, I know it is not a laughing matter but as I look round my house, it sounds like yours. We haven't replaced carpets though, I got rid of all those hubby comes in contact with. We now have floorboards in the bedroom with a rug where he puts his feet. Non slip fabric underneath so it doesn't add to falls but at least I can hose it down and hang outside when necessary. Downstairs carpets have all gone but that is parquet ( very scratched) so I just wash it when necessary. Easier to sweep or vacuum all the hundreds of little bits of tissue that end up on the floor. It's amazing how handy you get with paint brushes, screw drivers, wood glue and joining brackets etc etc.
me in a string bikini would clear the beach so won't go there.
Have a good a day as possible today.
Regards
Nanna B
I hope we,re all there with you,regards,Rollie
Hi Alana, loved your reply! Thanks, hope it was meant to make me laugh!!! I know all these things happened and I know you didn't laugh at the time, but I hope you are able to laugh about a few of them now!
Love the thought about being on a tropical island, it's pouring with rain here and dark and miserable. Heh ho summer is here in England! I think a few toy boys would be needed, on a rota basis, don't want to get bored or attached!!!
Perhaps that's a good theme for everyone - what do you want to come back as in the next world?
Hope you are in a good place at the moment. Today as been a lot better!!
Lots of love
Heady
Yes - meant for a laugh.. Your ideas I like and have been added to the master plan... - the tropical island will of course have a waterfall - as running water cascading over bottles of champagne makes a beautiful cold drink in no time at all..
This island is going to be very full!!!
Lots of love
Heady
Oh Alana - I'm sorry for you - but thanks for the perspective. I've lost several dining chairs, an antique rocking chair, a side table, lots of glassware and pottery, a couple of interior shutters and my linen closet (he imagined making a hall through it) among other things, but NOTHING like the wholesale destruction you describe. It was frustrating to come home from work one day with enough energy (for once!) and a plan for making some headway with household chores only to find I have instead to clean up the heap of soil from the dining room floor where he tipped over the ficus, which I have to trim and repot, then to wash the inside of the fridge and all of its contents because he set the quart bottle of fermented sweet tea on its side with a loose cap on the top shelf. No terrible damage, but no headway on the chores at all, of course. He also keeps mowing over my flower beds - but at least he's mowing! So I'm doing well, I know, by comparison, at least so far. I think the hardest thing for me is not to react so as to make him feel worse when he's smashed something. Heaven knows he's not doing it on purpose.
I'll be on the next island over.
Love and peace, Easterncedar
hi mr and mrs c hows it going ok i hope and mr c still in training for the big bike race I see hes broke a thing or two at the house what I meant to say was its only possesions not stuff I just could not think of the word ]] well today we went shopping with my youngest son hes 54 and then we went back to hes house for tea it was a real good day everybody felt relaxed \\\\\ sunday my granddaughter and great gran children come to our house where I will do some magic for them and give them rides on my electric scooter we have a great time and I feel free of my psp \\ see you mr and mrs c take care of yourselves peter jones queensland Australia\\ psp sufferer
That sounds like lots of fun, Mr. Jones! I bet the grand kids adore visiting their magician grandfather. You gave me a smile just to think of it. Thanks! Easterncedar
hi eastender itn was a lot,of fun to see a 3 year old in my
in my black top hat and then tell me he wants to do the trick on hes own so of coursed I had to set it up for him bu=y the time he had finished abracadabra ing and the trick was displayed on the floor for everyone to see\\\ we could only see hes eyes just peering out from the top hat it was hilarious and a wand waving in the air anyway after this performance was over the 5 year old wanted to have a go so off I go into the magic room to sort something suitable for her with the other young one close on my heels saying again again pa well i felt pretty tired after being bombarded by a couple of whippersnappers so I had to call that it but it was a good day and we all enjoyed it we had a quick lunch of chicken and chips
then home they went \\ see you eastern cedar and mr C hang in there mate I hope you are doing ok I can feel myself slowly getting better\\\\\ I only wish it was from the psp but never mind a mate someone from hospital coming to shower me tomorrow was not to popular the last time I have a hand held shower head and my shower is quite small with a door on \\\ and yes I did \\\mate I turned the shower head around to rinse the soap off of my head and out of my eyes
and im afraid I got her as well of course I was apologetic
she just smiled and said that's ok but I really think she would have liked to have said you #$%^&&&^^^&* fool
which I did feel like but she had an apron on but it did not save her oh well thems the breaks mate see yer take care\\\ look after yourself peter jones queensland Australia psp sufferer and shower mechanic
hji Alana you do have fun in your house don't you I thought I was bad enough when I nearly wiped out the plantation shutters or my wife did\\ but I know ive said this a 100 times before we cant help,it mate nothing is done of of frustration well not yet anyway\\\I will tell you what when you get to this place in your next life give us a shout it sounds terrific although i think ex psp ers will be banned for a while======== probably a good while if that place is as good as you imagined well mate good luck with then rest of the household stuff after all its only material things isn't it mate but hard to come by the 2nd time around or 3rd or 4th i was going to say take care but I don't think I will now \\i enjoyed your em im glad to see i am not alone but not quite so much damage peter jones queensland Australia\\psp sufferer
That's right, Mr. Jones, it's only stuff. I tell myself when something gets broken that that's one less thing to pack up when I move again, and one less thing for him to fall over! (But then I haven't had the infrastructure destruction Alana writes of.) You're wrong about one thing - the psp sufferers won't be banned - nope, straight by express to the best heavenly lounge chairs by the sea. The powers that be will have a lot to do to make up for all the suffering they've caused with psp. And they've got some explaining to do!! Cheers, Easterncedar
Perhaps we will have to allow a few young females to wait on them hand and foot. The toy boys will be able to look after the females.
Lots of love
Heady
i have broken a couple of chairs jus t by sitting on them badly (throwing myself on them)
and have also used priceless antique furniture to haul myself up by when i fall and have to get upon my own )( a lot of the time _)
my partner thinks i do it on purpose but of course i don't and it is good to laugh about these things rather than cry as i tend to do when he shouts at me 4 making a mess
loL jiLL
hi jill well mate I thought you were doing so well I do not think that ian would think you fall over on purpose mate its been to long for that I think I told you once if you walk up to the chair
and then turn around and feell for the chair with the back of your legs then sit down I hope the chair has arms on it ===== it would be a lot easier if it had then you could lower yourself into it instead of flopping which I tended to do as well
but after falling off a few times I did learn by my mistakes but sometimes I do forget myself and flop which is bad news for us psp' ers I would put the antique ones away mate \\ thats money in the bank\\\\\ tell ian to hold off making you cry as well mate theres plenty of time for tears later on for the right reasons\\\\\\\\\\\\\\\\\\\\\\\\ so take care mate see yer peter jones queensland Australia I do not see how anyone could think that we fall over on purpose its to painfui
Heady,Madeline used to go to bed at a reasonable hour so I had a few hours of rest..well at least a few 15 minute periods,now I carry her upstairs when I go up,and she now wants to get up when I do...that means no coffee etc b4 the day begins...this morning I forgot to reset the alarm and that went off to add to the pie......I really know what you are saying!!!!!This site should be advertised to the newly weds so their road ahead would not be lost in silly crap.. love Rollie....PS watch out for holes instead of walls !
Heady, I wish there were set answers to these questions. It depends on the individual caregiver as to how they "cope". My heart is still hurting when I think of what my precious and dear Sharyn had to go through with this horrific disease. For me living in the moment or day helped me get through. An attitude of "ok, what will today hold for my Sharyn and I?" then getting it done. Day by day by day one after another. Sort of like a long walk uphill you just keep placing one foot in front of the other. I didn't focus on "Oh there's another symptom" or "She's getting worse". I just focused on giving the best loving care I could and not the issues of each day. Lord knows there were enough bumps along the way. Sharyn was more concerned for what I had to do each day than I was. I told her many times "Sharyn, that's just a minor blip on what we are dealing with. It's no big deal.". I never tired to the point I wished it was over and would end. I tried not to look beyond the current day or wonder what was coming next. You can't alter the status because PSP is in control, unfortunately. Were there walls for me? No, I can say that there were not. Were their difficulties, certainly. We are all imperfect to some extent and we are human. We make mistakes. We might speak harshly to our loved one in certain situations. I tried to apologize immediately in those instances and literally POUR on the love when they did occur. I'm not sure I'm helping you but I hope your path will be one you can handle, one day at a time. Jimbo hugs hugs
Dear Heady,
The number of times I read contributions on this site and just wish there was something practical I could do to help and it occurred to me that I have two spare double bedrooms, I live on the edge of the Forest of Dean (Wye Valley area) and I could offer some folks a weeks cost free break if they can organise for their partner to be looked after. I am sorry but I am no longer equipped to look after someone living with PSP. I mention two spare rooms so that if you would feel more comfortable bringing a family member or friend it wouldn't be a problem.
I appreciate it may not suit you, I took a weeks holiday whilst my wife stayed in a nice new nursing home and was visited daily by my daughter but I vowed never to do it again, it felt like I had deserted her; nevertheless we may both have benefitted, who knows?
Should Dorothy T or NannaB feel like a change or use this place to meet that's fine by me. Incidentally Dorothy T I spent my formative years in London SE15.
My proposal doesn't resolve an immediate crisis or get your husband back, I understand that, but if it has any merit just let me know and we can see what can be planned.
Kindest regards, Jerry.
Hi Jerry, what a lovely idea. The offer is so tempting but I couldn't leave my husband at the moment, one day maybe. In March we went to Suffolk to see my son and his family. The only way I could take my husband was to book him into a care home in my son's town. I took him out at about 10am every morning and back at 5pm. He cried every night when I left him. He was so depressed and went really downhill...becoming totally incontinent unable to stand for more than a few seconds and various other things. After being home for a week he had improved to what he was like before we went, walking with his walker, occasionally incontinent and laughing again. I would have loved to meet Dorothy T and you in a beautiful part of the country. One day maybe.
Thanks again for the offer Jerry.
Best wishes,
Nanna B
Fully understand, so sorry to learn of your husband's understandable distress when away from you and his familiar surroundings, the last thing one wants is to add to the stress in coping with this wretched disease. Anyway it's one for the back burner, I hope to be around for a bit yet, if that's not tempting fate!!!!! Regards Jerry.
That's a really lovely thought Jerry and much appreciated! S, thankfully, is not ready for respite care yet! Also, I'm not in a place that I could leave him. Can't go out with out him, but not really safe to leave him for any length of time. I am going shopping with my Mum and sister this afternoon, so hopefully that will go well.
Lots of love
Heady
Dear Heady,
Hope today went better... Injuries- nil?
As you guessed doors have been the bane of my life for a while- to a point I started removing them for storage... (So yes - they became my practical analogy of how events in life here unraveled...)
Now I by no means suggest you do this - However it is interesting how all encompassing this PSP can be -
I have visited a home with some walls intentionally padded (with soft vinyl coated wadding) and others curved. It was a park home near the beach in Perth specifically designed for someone with PSP! (Parkinson's WA have videos of it in their library)
NB Just fixed - garage tilt-a-door and now its on to the outdoor motor pump door and then...
By the way I just look at them as bricks and mortar, tin and plastic- Instead of more importance remains that you continue to have strength of mind, for body and spirit to care for yourself and husband.
Regards, Alana
Hi everyone, thanks so much for replies. I know you all knew where I was coming from, but hearing it, makes the world seem a lot less lonely!
Today has gone a lot better, been busy so that always helps. Rollie, you said watch for the holes, I think that is where I went wrong, always aware of them little "b's", forget to look up!!!
Any way thanks again for your help and love.
Lots of love
Heady
Who are your guardian angels and why?
I'm new and Wanting to just put down my thoughts...
Hiatus - A song for those gone and for those who wait 
Finding a carer for Mum who will lift her 
Easy to remove /put on cosy clothes for winter. 
