I AM IN HELL. IT TOOK ME 3 HOURS TO GET HIM OUT OF BED AND DRESSED AND I HURT ALL OVER. A REALLY ROTTEN DAY. IT SEEMS LIKE HE GETTING WORSE ONE DAY AND THEN HAS A GOOD DAY THE NEXT. I DON'T KNOW WHAT TO DO ANYMORE. I AM LOOSING IT COMPLETELY. HE KEEPS ON ASKING ME WHEN WE ARE GOING OUT TONIGHT WHEN HE IS BARELY WALKING MUCH LESS TALKING MAKING MUCH SENSE. I HAVE CALLED EVERYONE I CAN THINK OF FOR EXTRA HELP BUT NADA. RUNNING AWAY, SOUNDS LIKE A PLAN.
AUDDOZ
Oh, Auddonz, I feel for you. I see your partner is in his 70's, I'm in England and have little or no help either. The difference is I look after Mum who has CBD but other than that many 'co-morbidities' as they so nicely put it. She's 84 with COPD, AF, is totally blind, yada yada yada.... Mum constantly wants to know when we are going back to her house, we are in her house, but she doesn't believe me. It's hard on me but I'm 58 and I'm worn out but for you it must be terrible. It sounds like you really need a break. I don't know anything about the system in America but surely there must be some help available. It's available here but it seems a bit of a postcode lottery. I asked about hospice care in my area the other day and was told it's only for end of life, like the last month or weeks. Many of the people on here get it for much longer in other areas of England. Que sera. Your hospital sounds very like the one near us, loads of staff but they all seem to be gathered around the computers talking. I've decided hospital is the absolute last resort now but I was a nurse so it's easy for me to say. You must get scared sometimes, I know this hasn't helped but just wanted you to know someone heard you. Much love , Sharon x
Oh really feel for you, you sound like you are desperate for a break, what will happen if you are ill? America sound like there is not a lot of help for you careers, sending you a massive hug. Lots of love Yvonne xxxx
Not much....Must look away from the hospital system....a church built B a ramp last summer.....I'm sure there's help out here but it's like looking for a scholarship....however we carers don't have the time or energy or joyous anticipation as the student looking forward to their future..
AVB
You are so right Yvonne. Can't seem to get anything more than the 2 hours a day, 3 days a week. It is really taking its toll now.
Lots of love back,
Audrey (aka Auddonz)
I live in scotland i have psp got refered to my local hospice from my gp and ot see your ot and gp you should get a referal gd luck thinking of u x
Oh Auddonz, I was down there with you last week and have had a pretty rough one today. Things are always worse when we aren't feeling fit ourselves. My back "went" last Monday and I nearly fainted with the pain. Like Sharon, we are in the UK so I can't help but my thoughts are with you.
I hope things are better for you tomorrow/ today.
X
NannaB how are you?
OK now thanks. I didn't know how I was going to continue last week but prayer, hot showers, heat pads, painkillers and free time with lots of laughter eased things no end.
I hope you are OK!
X
Hope things are better for you as well Deb , later in the day . I keep saying I need anoTher me in the house .
We have the carers three times but for toward they do iTs not a lot is it . It takes over as well an I find I have to work around them not them around us .
Not their fault of course just how it is .
.pi often think if I didn't have John I would like to go and help someone else to make their life a bit easier .
It would be nice to have someone regular , maybe two and work every other week . Come in the morning ps at the time I choose not fit in with carers Rotas . And stay until about three that way she would be here on the days I have my its . Well she could do the sit . Just be me lol .
Not asking much am I . Someone I am confident with and sdoes things the way I know is best for John .
I a can dream can't I . Can colin follow the football is he interested in it . John does try and listen but finds it very hard to keep up . He cannot tolerate the noise either . He does try though . He has been in a very switched off mode all day but has roused re net,y he often will around the is time of night , thankful for small mercies
When my brother and sister in law came to stay I asked them if they'd like to move in. They were so good, helping me hoist C when we went out and my brother cooked all the meals we ate at home but we ate out a lot as well; and the cups of tea...I didn't have to ask, they just knew when I needed a cuppa. You are correct Cabbagecottage, it would be so nice having someone here when we needed them, not when their rota said. Our night nurse has gone back home to Slovakia for 5 weeks. C is going to miss her so much. She does 4 nights and has been doing so for nearly 3 years. She knows him so well. Tomorrow we start having new people so I'll have to do all the explaining yet again. I'm going to give them all the info I got from the PSPA to read.
My back is much better now and I feel I can cope again.
C can't really follow the football but I leave it on for him to listen to in case he can. England are playing Slovakia so if our carer was here we could have supported our own teams and made a lot of noise.
All being well we are going with 15 others to Penshurst Place tomorrow, a stately home 25 minutes away. I'm also having a cream tea. C pays for admittance but I go free as his carer. I pay for the tea and C can't eat it so with 1 entrance fee we get what we want. There is a guided tour with a video in one of the downstairs rooms where a friend said she will stay with C while I do the tour. She has been several times. There are also lots of wheelchair suitable gardens so hopefully the rain will stay away.
I hope your day is good.
X
We could move in all together lol . Always someone there if you want to get out .
My back and neck is pretty bad as wel, bit helped by bending Ives to tend John , . One of the smallest hug hardest is lifting his legs to
Pull the Starks of the sling beneath his legs . ., the rest is ok but aimetimes full on up and down wiping his drool eyes and nose .. All seem to run at the same time ,. .
I had to be a bit firm the other day with two carers they think they know best for John and I see th glances back and fore
I told them they are only there for a shirt while and if things are not done properly I am left to sort it out .
Today my daughter called in and if he needs the commode ,he's a devil not to bother then and then the carers came they asked he needed and he shook his head . Of course after everyone left he was in pain .
He can have blips and wet when asleep but mostly is continent which can be more a worry in som ways . I would possibly leave it to the carers higher to see to ham when they came otherwise .
I can't bare to leave him wet though .
My brother and wife use to come a little but I find it more diffI hot now trying to entertaining them and food etc . Janet his wife is lovely though and she wil see to food , it's like have a kitchen faith isn't it
I have been getting bitten to pieces . It was the same last year . The lady next door has a pondbut doesn't clear it if keep on top of it so I think midges are coming in from their ,
Have a lovely day tomorrow not heared of that place I will google it now . So nice C can still go out with you . . So much has changed in Newport where we love . John would get list now . Bit late now go and get John into bed . Night sleep as well as you can xx
Cabbage, That's a thought living together. I wish we could since we the only ones who understand. I can't lift his legs either feel like trees and yesterday I just sat and cried when I couldn't get him out of bed. No one comes here other than his aide, as little time as she gives me, PT,OT, nurse for a few weeks. I repeat the same things over and over but I sometimes think its like living with a 2 or 3 year old. He just doesn't understand which breaks my heart.
Love,
Audrey (aka Auddonz)
Very hard , I know .
When I look back , in some a
Ways I find it easier now because is bed or chair hound and we have a free standing ceiling track hoist in two rooms.
Becomes part of the furniture now I have got used to it. Once I have the sling on him the hoist does the rest . It's a bit fiddly but I can even put his trousers on and off while in it.
Also the hospital bed rises and lowers so saves my back as well ..
I well rd,ember the awful struggles we both had while he was still trying !!!! To stand walk or transfer from cha if to wheelchair , we also have steps at the front of the house. .
I a, sure he didn't realise what a toll it's put on.me , still doesn't in a way although I know he does worry about me.
Yes we are the only ones that really have any idea what it is like. .although everyone is different ,
had anew brainwave today. John struggles to feed and swallow . So I have started to give him a spoonful and then offer up the spoon empty to him again. It makes him swallow twice to help clear his mouth of th drool as he eats. It's so bad he is afraid to eat as much , had very little as it is. .
Onward and upward . I hope you can find ways and means around things , just ask anyone if they have found any easier way round things on here. Night
Night
Praying for you as I go to bed and sending hugs . It's just unbearable for sufferer and carer .Can you tell your doctor and get some respite or help that way ?? I don't know what else to say , but I hope just knowing we all on this site will know how you are feeling helps just a little. Tomorrow is another day, here's praying and hoping it's a better one for you, xxx
TY Gypysy, always need hugs. My Dtr knows but he will tell me to put him in a home and I know they will kill him there. Knowing you are all here when I am having a really hard time, makes a big difference.
xoxo
It sounds awful for you. Like the others I can only say I am thinking of you and I hope you find some support quickly.
Love and a big hug, Jean x
Oh poor Audrey...and husband.....
I know where your'e at! I cant get B to use his legs...and he laughs when he falls on me.
I think it's more of a nervous giggle sort of like "Oops, sorry" but it still hurts especially when I don't feel well, physically or emotionally .
I will wake up to him in mid of night getting ready to go somewhere...I tell him he's already been there and it's time for bed....etc....
Engage him in a conversation about where he wants to go if he could go anywhere. Talk about where you'd like to go or better yet the places that you both have been and how wonderful or horrible of an experience it was! And if all else fails tell him he's already been! As others here know repeated actions or ideas are common amongst our mates...B used to insist that I park a specific way. He had the idea that the tree was going to fall on the car......granted, it could fall on the car, but its been able to fall on the car for the last 20 years....so why he started haranguing me two years ago, must be PSP related....he has since stopped but has moved on to other things ....I just now escorted him to and from bathroom where he thought (once again) that he could sideways lunge into the chair and (once again) missed landing on the suction machine...not a happy landing as it is a SOLID wooden box the machine is in. No worries, he's not hurt the box is fine and me...I don't know... What is really distressing me is that he is not able to get up as easily as he usually does....He so needs someone to take him to the gym....What little he got out of it is being lost as I can't drive (another week...and I should be good)...
Audrey I;m sorry you are so alone and it is hard to get someone to help you! And all I can give you is a virtual hand ....that does'nt get your'e man up off the floor does it...
Good night girl . Lets hope tomorrow is better
AVB
TY abirke. Things change every day and he changes every day. Having a conversation with him is virtually impossible. Like last wishes, what he wants done, etc. Just tried to wake him to give him meds and couldn't. Fortunately his mouth open so I just put them in and held a bottle of water to his moth to swaliow them. His bed sheets are both in the wash, sitting on the sofa. I really try to keep him sitting up rather than lying down. He doesn't g to a gym. PT< OT and NURSE come to the house. Trying to teach him and me how to get him out of bed in the morning which is the hardest for him to do for him and me. I tell him there is no place for us to go every night, no party, which he seems to think we are going to or its to late. Thanks for the virtual hand,much appreciated.
Audrey xo
Then have a party at your house......put on his music and dance with him......He needs stimulation....and so do you. Let him sit and watch you dance, hold his hands while he sits and let him feel the rhythm of the music , through you.....You too will release some seratonin (?) that will help you feel happy for a moment....B never danced but I love to dance so it's easy for me to do this ...well it was before the vertigo....
Don is in as much hell as you are.....I don't say this to make you cry or lay guilt on you just to help know it's ok to give him a little something besides meds and fresh sheets.....Im sayingall this when just a few days ago I couldnt get off the freaking floor of my hell...
Love you sister,
AVB
Auddonz, I can understand completely, my husband is pushing 300 lbs. and needs assistance to get up, sit down, etc., takes him an extreme amount of time to move, eat so I feel like you so often too especially when people say how wonderful he's doing. They see him in his wheelchair and don't realize that he needs total assistance. I don't know if you are aware that the ADPA has a respite program at least my Midwest Chapter does. If you are a member you are eligible every 12 month period for a $500.00 allowance for respite. It might have limited funding and be on a first come first serve basis but worth looking into. Since PSP is a parkinsonism I would think it qualifies and would be worthwhile checking out. I hope that there will be some brighter moments for you, please take care of yourself. Sending a big hug and good feeling your way. Jo
What is ADPA, may I ask? Google wasn't helpful!
So sorry, it should have been APDA, American Parkinson Disease Association.
Dear Audrey, I hope tomorrow is a better day. It's awful how much you are having to do on your own. I wish I had some help to offer. I don't suppose most of us can expect the kind of care we are giving! Hang on. Love, ec
Trying east but it is getting so much harder. Our kids don't help or visit. His brothers, he has 3 left, especially his twin, lives 4 hours away and has been here exactly once in a year and very rarely calls.
Love,
A
Oh I am sorry. That's very hard. What makes people be so cold?Our families are much farther away, so no blame to them that we don't get regular visits. I have sisters who will come if I get desperate, but the nearest is 9 hours away, and she has her own family to worry about. She has come to the rescue twice, bless her, as has the one two days' drive away. Even my then 88 year old mother came once (640 miles) when I had shoulder surgery. My guy's kids are much farther still, so tend to fly in and visit a couple of days and fly off. Lovely to see them, but not much practical help.
Beats me, even our kids who both live very close don't come over to see him. Daughter has a family with younger kids but lives only 3 miles away and doesn't come over to visit. Son lives an hour away and doesn't come. I raised kids with no hearts.
What a sad thing to have to say. I am very sorry. Hugs, ec
I agree with notentitled, there are quite a few programs out there to help you. I did not realize that my state had a respite program until about a month ago. We are 4 years into the disease. Praying for you.
Sorry I cannot offer anything practical as I am UK based, but you both are in my thoughts and I hope tomorrow is better.
Thanks also for putting my problems into perspective - I thought it was bad coming down at 3am to find bugs on the floor. I thought she had got up and fallen but she was looking on a low shelf for a DVD.........
So sorry Audrey that you are having a bad time. We are thinking of you and hoping tomorrow is a better day.
Vicki x
You can try to get him signed with a hospice because the illness is considered terminal. They can offer respite and some good support and guidance. It is paid through Medicare in the US. My heart goes out to you- I understand too well how you feel.
There's a full moon, and it's a fact that behavior can be affected. Hang in there best you can. Keep reaching out, you're really not alone..
Well, you can *try* to get hospice involved. Here in Maine I was told by hospice that hospice would only help if I had a doctor's statement that my guy had less than six months to live. They acknowledged that the doctor might not be really "certain" about it, and the six months could be extended. So the trick is to have a doctor who is willing to sign something he knows is not necessarily true.
eastern, Hospice is good but it is the 6 months to live that is not true and I doubt any of them would sign that.
East, Also you cannot go to the hospital for any reason if you are on hospice. And you can not do any intervention even antibiotics.
Dont think we are quite ready for that1
Yeah, and I had a dear family member dying from kidney failure, and hospice wouldn't help until he stopped dialysis, even though it was only prolonging life, not saving it.
I didn't know it was considered terminal. I thought a Dtr had to write he had only 6 months but I know that is not true.
Right. It is terminal, but there is no sure short timeline. I was bitterly disappointed by my visit with the local hospice. Everyone kept telling me I had to contact them, that they would surely help. And oh did I need help! So I described the situation on the phone and was told I needed to come to the office to discuss our needs. When I arrived I wasn't met by the professional staff I had the appointment with, but by a counselor of sorts who explained there was nothing they could do for me, because of the six months rule. It was a devastating waste of a very scarce free hour for me. But at least I had an answer for all those people whose only offer of help for me was their good advice to call hospice. And yes, I'm still bitter.
east, nothing works the way it is supposed to. I would be furious and scream at them.
Oh Easterncedar, I am so sorry! I am one of those, who insist hospice is a great place to get help. Here in the UK, they are all charity based and are there for everyone with a life limiting disease. Totally free, nothing to do with the "wonderful" NHS and most of the staff at the day centre S attends, have personally dealt with PSP before!
Lots of love
Heady
It terrifies me just reading this and other posts like it. I am pretty sure I will not be as patient and caring as the rest of you when things here get to that stage. I will probably leave him in bed for the day if I don't feel capable of getting him up - and maybe go for a long walk by myself ((better still, play tennis!) and deal with whatever I find when I come home. Is that too awful? What is the worst that can happen? Just another fall. They happen when I'm right there. And that's why he has a lifeline alarm. In many ways we are patients too, but who takes care of us?
Finoni, I have put baby monitors in my house, and I watch him through my cell phone when I go out. I can talk and hear him through the phone.
I have also put cordless ($12 at Walmart) on his bed and the bathroom. He can push the button to reach me. Even if I am away from the house. The cell phone dings when he pushes the doorbell. It is one way I have learn to cope with this bad disease.
Thank you, Mthteach, Those sound great. What brand of monitor do you have that you can see him on your cell phone?
The only monitor I have tried had too much static to be useful or tolerable.
fINONI, motorola model # MBP85C0NNECT. I can drive all the way across town and still see him perfectly, and I can hear and speak to him. My daughter had one for watching her mother-in-law that had Alzheimer. She gave it to me once her mother-in-law died. I went and bought one from Babies r Us for $150. I did not purchase the hand held unit that you watch them on because it is what you call static and bad.
I came home and read up on it on the computer; how I could use my cell phone with it. I figured it out.
When he makes a sound the monitor will ding me on the cell phone. I can open the app and see what he needs. I can even work in the yard and when he rings the door bell on his bed, I hear him on the cell phone. I would go crazy in the house all the time.
Those days when he was falling was the worse. Now days he can no longer manage to even sit up in bed. He has been put on oxygen about once or twice a week. When he needs air, he rings the door bell that I have strapped to the hospital bed.
He only gets up to eat, and then he wants to go back to bed. I think his eye sight is going bad. That is more than he can deal with right now. He has had PSP for about 4 years. I'm sorry such a long letter. Deb
That's good and helpful information, Deb. Thanks for sharing your problem solving!
Oh Audrey, I feel so sorry for you. It is the feeling of total exhaustion, lack of sleep, emotional stress that gets to every one of us at times. No magic wand I can wave for you, sadly, but just know that we all care and empathise with you. It sounds like you really need a rest but we all know how difficult that is to arrange.
Hope today is a better day for you.
xx
Sorry you are having such a difficult time with precious little help. It is hard being ' on duty' 24/7. You feel like you should be a saint and cope with everything thrown at you when, in fact, we are just human with feelings and failings and mot always able to cope. I hope things improve soon and that you get some help in place. Love Kate xx
Dear Auddoz,
I'm in NC and don't get any help either. So few medical professionals know about or know how to deal with this.
So sorry for all you're going through. We are stable but I wait for the "next shoe to drop everyday" so I'm never relaxed.
No one will help unless you give them money, every last cent. We are homebound quite a bit but nobody thinks about "Us" you and me.
My thoughts are with you. That's all the support I can give but believe me I understand.
Cuttercat
cuttercat, there are programs that can help with sitters. They do not go by your income. They were already mentioned here. I only put on the form that I am the only carer for my husband. She told me to put carer burnout. The next week a letter came in the mail for $400 sitter voucher. I have 2 months to spend it. I send them back in the form with the sitter's name and phone number, and they send me the money. Good luck!!!!!
Who do I call?
Have you used your carer stipend yet?
I have not used all of mine. I have until the end of July to use the money. I have had surgery June 10 and another July 13, so I will wait and use it when I am down.
How;d the surgery go....oh poor baby no one to help you....One of the God awful things about being sick when you are a carer, is that get worse before you get better.....emotionally drained ,..,,,, everything seems it's worst. You do need to get soem sort of care before 7/13.
Will it be a surgery on the same thing or completely difft?
At any rate I do send you my prayers for a speed recovery, physically and emotionally
AVB
abirke, No my surgery's are on different ends of the body. LOL
I had to have a stent put in my urethra. I kept having UTIs for no reason.
I have a hiatal hernia. My food gets stuck and I end up throwing up. No doubt it is my nerves.
Yes, I have broke down and hired a sitter to come this month and next month. Thanks to a Respite grant, I was able to get $400. I have not had a sitter before. I have taken care of him by myself.
Oh dear, Well I pray the surgeries complete their mission and help you get back to your fighting stance.
And use every bit of that 400.00 at 15 dollars an hour that's 26 hours and at 10.00 its 40 hours! Lets hope the agency asks for the latter! Even 26 hours will give you time to be off your feet! I would go ahead and ask friends to help out as well....A week off you feet in both cases sounds like it should be part of the remedy!
Good luck,
AVB
Audrey, I've been right there in your shoes and realize how exhausting it can be to take care of someone in the later stages of PSP. And it has to be twice as hard when the patient is a male. Caring for my wife can be a challenge, but she now only weighs about 112 pounds and I'm a 215-pounder. If the roles were reversed, I'd be up a creek! But as PSP patients get worse, in some ways it gets physically easier, as they tend to clam up and don't tend to move much on their own. It's almost like they're in a coma. But as they get worse, your mental gets worse, as you know you're in the home stretch with this disease and will be soon losing your lover and best friend.
Kim has now been in hospice care for 6 months and they recently re-certified her for another 2 months. Now, every 2 months they have to re-certify her. But as long as she's not getting any better, they are willing to keep her in hospice. With hospice, they can arrange to have volunteers to come and give you periodic breaks, a few hours at a time. I personally have never taken them up on it, as I can usually get Kim's mom, my dad or daughter, to come and sit with Kim while I run some errands.
But also know that curepsp.org has a respite fund for caregivers that can reimburse you up to $750 annually. All you have to do is call them at curepsp and tell them you would like to receive funding. You then provide them with receipts from whomever you paid (has to be a company that provides in-home care, and not a family member or friend). They then will reimburse you up to a certain dollar amount. Not many folks know about this nice benefit. Here is a link to their site and describes the fund: psp.org/support/curepsp-res...
Hang in there Audrey! You have my thoughts and prayers.
Ketchupman
ketchupman, That is good to know if I ever get into trouble again. I did not know curepsp did that. I was able to get a state funded carer program to help. Thank you for always being there with good advice. Deb
Where are you again, Ketchupman?
Louisville, KY
Hi Ketchupman, I am getting $106 a month for me for being his caregiver from elder options in Fl. Buts its the physical toll on me that hurts. Did mention I am 77 and weigh a whole 103 pounds? I just sit and cry in the morning when it is hardest for me to get him out of bed.
You're just 20 years older than me, so you're still a youngster. You really should apply for the help from CurePSP. Or consider enrolling him with hospice. Not only does a nurse come at least once a week to check vitals, but a nurse's aid can come 2-3 times to help bath and dress him. And volunteers will come and give you periodic breaks. Plus they provide equipment (Hospital bed, shower bench, raised toilet, suction machine, oxygen,diapers, pads, PEG supplies/feed) and all drugs. And if you change your mind about hospice, you can drop them instantly. And Medicare covers all of their expenses and they will never send you a bill. If you want to chat sometime, feel free to call me. 502-216-4563
Kp, your so nice!
Thanks ketchupman for the help. Where are you located? Since we already have a nurse coming in from medicare it might be a conflict.. His drugs we get from the VA and they are going up in price. Unfortunately our income is not going up with it. Thanks for your number, might just do that.
I'm in Louisville, KY. Home of the Kentucky Derby, KFC, and the Louisville Slugger! Once you go on hospice, Medicare no longer provides coverage and everything is provided via hospice (Medicare pays the hospice organization a flat fee for all care ... for Kim, it's about $4500 a month!). I'm not sure how it works with the VA. Hospice only provides things based on the disease. So while they cover most of her drugs, they don't cover them all if it's not a drug to treat PSP. For instance, they don't cover or provide her blood pressure meds. And they didn't cover her flu shot last fall. Fortunately these are all the less expensive items.
My hubby is on 9 meds, some of them for high blood pressure, thyroid, etc. Prob would cost me more out of pocket
Possibly. But they could probably tell you up front which ones they cover. And those that they don't, should still be covered by Medicare and/or the VA.
Might be a conflict
Thanks Kp! Now thats good to know...We are not at that point...well quite frankly, I could have really used a hand a few days in the last month....
nOT TO MEAN OR ANYTHING BUT SIT DOWN FOR A SECOND AND JUST IMAGINE IF THE ROLLS WERE REVERSED HE WOULD BE THINKING YOUR THOUGHTS AND FEELING THE WAY YOU DO HOW WOULD THAT FEEL, JUST IMAGINE THAT YOU WERE THE ONE GETTING MORE HELPLESS EVERY DAY AND ALL YOU INDEPENDENCE SLOWLY SLIPING AWAY FROM YOU AND THE RUNNING AWAY PART , SOUNDS GOOD BUT THEN WHAT WOULD BECOME OF YOUR LOVED ONE NO ONE IN THE CONDITION THEY ARE IN WOULD LOVE THEM AS MUCH AS YOU THE WAY YOU FEEL RIGHT NOW FRUSTRATED AND TIRED SOMEONE ELSE WOULD PROBABLY FEEL THAT SAME WAY AND JUST NOT CARE AND THERE DOING A JOB THIS IS YOUR LIFE SO PUT ON A SMILE AND MAKIE IT THE BEST YOU CAN WHILE THEY ARE STILL HERE
LOTS OF HUGS KRYSTE
Hi can You get help from a government agency. Someone to come I and shower him and get him dressed
Our ladies made his bed then Dale was ready for the day. Is respite care available for you. Even a week makes a difference.myou can charge up your batteries and he will be getting good care
I organised a week every couple of months. It was good
Hold in there, take a long breath
Is there a Parkinson's Society around you they help with PSP condition as well and can point you in the right direction
So good you can rant on this forum. Everyone understands
I need the respite for me before I fall apart and he needs more help other than just me and an aide from the VA who comes 3 times a week for 2 hours each day. Its the mornings that are the worst, getting him out of bed takes hours. Will look for a local group that maybe can help. Yes this is the best place, everyone understands.
O dear I do feel for you . I know how hard it is , you want to scream and you just think how in earth can I keep this up .. The you get a glimpse of a better hour which gives u a lift . .
I am sorry I can't help much not knowing how things work for you .
We do have the pArkinsons uk whi can advise or even speak to a nurse and have su.pport officers who do their best for you
Audrey, sorry it's taken a while for me to reply. I have been on, exactly what you need, a well earned break. Being the UK, I can't advise you where to go to get the help you need. All I know is you must, by hook or by crook, find the means to get yourself a break.
Sending big hug and as much strength as I can, across the ether, for you.
Lots of love
Heady
Hi Auddoz, I feel for you PSP is such a terrible but a strange one to say the least, one day there acting ok the next day is horrible, the brain is so complex. My brother does the same at times he could not even take one step to get him in the transfer chair it takes a while at different things that go on with him. I live in the US you can contact Medicare, not sure what their policy is regrading care, but there is what they call PASSAGES, they do come to the house for care and to give a few hours I think it's three days a week it's a 800 # maybe you can reach them and get some help for your sanity, we all need that at times, thinking of you, Blessing. Nettie
We have an aide through the VA who comes 3 times a week for 2 hours each day. Think it would be a conflict of interest with Medicare. My sanity is going quickly 
Auddonz
I'm not sure what your situation is, but is it possible to get him into an assisted living home?
I really do understand how you feel.... I work full time and could no longer care for my husband's needs for many reasons. He's an extremely needy and anxious person on top of the disease! So there was a point at which I HAD to make a decision to find an assisted living facility for him. My health was at stake, too. We have been using his IRA to pay for it.
It's still difficult; I go to help him with his dinner and bed time every night. But I think of the last year he was home with me, and in comparison, it's MUCH easier. I hope you can find some peace - this truly is hell on earth for ALL concerned. Please find some help, even if it means calling a social worker or an agency that can steer you in the right direction.
helpguide.org/articles/care...
Traditional funding sources for respite care in the U.S.
Insurance: Although medical insurance generally does not include respite coverage unless licensed medical professionals are involved, long term care policies usually fund services up to specific time or dollar limits.
SSI: Patients with disability coverage may be eligible for home health care benefits. Check your local Social Security office to verify eligibility.
Medicaid: Medicaid does not fund respite directly, but some states use waivers to apply federal funds to offset respite costs for residents with specific conditions and disabilities. Consult your state’s Administration on Aging website.
Veterans’ Benefits: The VA provides inpatient respite coverage for up to 30 days per year for qualified veterans. In addition, when war-time vets care for their spouses, funding for in-home services are available on a state-by-state basis.
Foundation Grants: Private foundations, such as The Robert Wood Johnson Foundation and the Brookdale Foundation, make grants to organizations that provide direct respite. These funds are usually awarded annually and posted on foundation websites.
Nonprofit and Disability Organizations: The United Way, the Alzheimer’s Association, and other disability-specific organizations may offer respite money in your area. Agency care specialists can assist you in researching these funds.
State Agencies: Over half of all states allow family members to receive payment for providing respite care. Eligibility, delivery modes, and funding vary from state to state. To learn what is available in your area
This was a helpful web site.
Very helpful, thanks!
Is this normal? Am I expecting too much?
My husband is coming out of hospital today and I am scared I will not cope.
\"Why am I so tired all the time?\"
