I am going through a dark tunnel don't know which way to turn, George's agitation is getting beyond belief, feel so stressed. Last night he was trying to get out of bed, saying he was not tired, then put the sides up, what does he do, his legs were over the top of the bed, banging on the bed until 3.30 in the morning.
Today he is very agitated opened his catheter urine all over the chair and floor, I have increased his lorazepam to two, no different. Anyone else have this behaviour I just can't cope with it, when I have had no sleep.
Granddaughter here she has just come out into the kitchen asking me if I needed a hug, I said yes please, so unfair this f****g PSP just want a life, just want to be able to sleep, I want to be able to be me, I now it is being selfish but I can't stand it anymore. I often wonder if George would do this for me, and the answer say I don't think so.
I am away in May for a week feel like it is taking forever to come around.
Am I being horrible and selfish? But it is hard.
To top it all George was suppose to go and have a super pubic catheter, he doesn't want it we have all tried to convince him, DN came in a tried we have all tried, so I cancelled it on Monday only to have 2 phone calls today to ask were George was? Do people just take messages and not bother to relay them? What a waste of the hospital time, I asked them to tell the consultant, they said they would, but once again people don't care. Yvonne xxxxx
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Sorry to hear the trouble your having with George's agitation
I hope he calms down for you to give you some sort of rest
My partner hasn't got that problem but I've had the experience with him trying to get out of bed and I put the leg part up on the bed so he finds it difficult to move like he does
I feel for you truly and I don't think anybody really understands people who don't know about it what this illness does to people who have it and the people who look after them
I send you my chimney that I have permanently to top of me head to let the steam out
Hope again you can get some rest and to focus on your break in may
Good on you Yvonne just keep that chin up love I know it's hard but we all seem to pull through it in our own way and f the diet enjoy the chocolate xx
Hi Yvonne, reading your post has brought back unhappy memories. We can all cope with far more when we have had a reasonable amount of sleep. I think you were getting CHC. If you are, why not ask for night carers. It's amazing what a difference it can make. I kept a note of how many times I was disturbed every night and was given a carer for 5 nights a week, increasing to 6 for the last 10 months of C's life. It's weird having folk in the house over night but I soon got used to it and one of the carers did 4O hours a week with C for 3 years so she became, and still is, like part of the family. She sat with the family at his funeral and cried with us.
Nothing goes on forever Yvonne. One day it will all change and I hope you can hang on in there until it does. It will soon be May and you can get away. I can see why it seems it will never come as it has been booked for sometime but try and get some decent sleep before then so you stay fit enough to enjoy your time away.
Sending you a big hug and think about night carers if it is at all possible.
Bev hope you are keeping well, yes had the holiday booked for a while, going on a cruise to holland. With my sister in law, my lovely brother is coming down again. We have got a live in career which is a great help , but both of us up. Yvonne xxxx
It sounds as if you must get night carers. You cannot go on without sleep. It sounds horrendous. I am lucky in that Chris doesn't get agitated. In fact in some ways he is less worrying now. He can't get up and doesn't make a fuss.
It just sounds too much Yvonne. Big hug from Jean xxx
Hi Yvonne you are not being selfish I want my life back also, I looked in the mirror today in Tesco as I was trying on some sunglasses and I looked awful don't really know who I am anymore never looked or felt so awful in my life. I am not having problems with J at night time, does it really come to this? Have I got this to look forward to? Omg oh my xx
You must get more help or your health will suffer. Get it established now, before you go. These are the unpleasant symptoms and too difficult to manage on your own. Do not feel guilty, nothing says you have to do this alone.
Talk to your services, get assistance. It might be time for a nursing home. If night carers might help, try that. Even a respite now, for a break. Nothing wrong with any of this. Take care, sending love and hugs.
Keith went through stages of being terribly agitated, when he was in hospital he was forever trying to get out of his bed over the top of the rails, when he wasn't trying to do that he was pulling catheters, drip tubes and arm bands out! The nurses couldn't understand at first and were confused as to I why I daren't leave him. By the time he had been there a couple of nights they began to realise the dangers and used to push his bed next to the nurses station so they could keep an eye on him!
Yvonne believe me when I say I know these times are so hard and they push you to your absolute limit, but if there was any way I could have Keith back by my side I would do it all over again in a flash....
I'm thinking of you Yvonne and am sending you a massive hug, I only wish I lived near to you and I would try to support and help you through this....
Pat thank you for your kind words. I am sure you would love Keith back, don't realise what you have until it's gone big hug back to you lovely lady. Yvonne xxxx
Yvonne, my arms are around you holding you very tight. Scream, cry do what ever you need to do.
I would get the GP in again, tell him/her what is going on, how you can't cope with it any longer. Is there stronger sleeping pills he could take? If not, some for you, so you don't get disturbed, just the Carer.
You are NOT selfish, just a woman at the end of her tether. I felt exactly like you, in those final months before Steve died. Of course I miss him dreadfully, but there is no way I could cope any more. I did get to the end and had made the decision to put him into a home, after Christmas. Even now, I still can't back into a sleep pattern and know I have a long way to go in my recovery, from caring.
Perhaps it is time you started looking at a nursing home, if he needs two people 24/7 looking after him, then that's a physical impossibility at home. I know this isn't what you want, but maybe the time as come. We all say at the beginning, " for as long as is humanly possible". Unfortunately, I think you might be there.
Oh Anne I now we are nearly there, I promised George I would keep him home, so feel so guilty. Sleep is impossible even when I have the chance I can't sleep. Anne keeping my fingers crossed for a good night, he can't keep his eyes open, waiting for career to come in and put him to bed. He goes to the centre on Monday and Friday so going to do something fun tomorrow with my beautiful granddaughter. You take care of yourself, hoping your sleep pattern gets better as time goes by. Thank you for the hug means a lot. Yvonne xxxx
Yvonne, we have had loads of talks about guilt and where it should be confined to!!!
I have just read the definition of guilty " having committed an offence, culpable, criminal"
Please ask yourself, which of the above you have done??????????
If it's an offence to love your loved one, work yourself into the ground, caring for them, wanting them to be safe, wanting yourself to be safe. Then yes we are all guilty!!!
Culpable, of course we are, I deliberately went out and caught PSP and gave it to Steve!
Criminal, I confess, I didn't want him ill, I didn't want him to die, I did everything possible to stop that. Guilty as charged your honour!!!
Guilt is the brain's mechanism to make sure we behave ourselves. Don't go around knocking little old ladies down and pinching their pension. Unfortunately it does not know how to differentiate between different circumstances. Our guilty feelings is the brains way of making sure we don't run off with the Milkman at the first opportunity, but to stay and care for our loved ones. Having to make that awful decision to place them into a nursing facility, is not running away, it's facing the facts about what is best for them.
Anne you are so right, always come up with the sensible solution. Sending you a big hug thank you for making me feel better as always. George at the centre been out cloths shopping with my granddaughter xxxxc
It sounds like you are having a really bad time, and no one can cope without sleep. I am thankful my husband no longer gets up in the night as he wears a bag which is brilliant as long as it doesn't leak! I do have disturbed sleep as he breathes very heavily now but I am getting use to that. You would definitely feel better if you can get the carers In at night to give you a break and get some sleep
Really hope the holiday comes round quickly and you get some rest
There's nothing I can add to the posts above except have you considered some night sedation? Clonazepam seems to be popular with the neurologists to assist sleep with PSP.
I know how you feel. Since DC has come home he wants to come upstairs to bed. I keep telling him he can't but he doesn't listen. I have been sleeping in the same room as him on a sofa bed! I like you lots no for a decent sleep in my own bed. Why oh why do they not see what we are doing for them and that all this isn't our fault.
Hi Yvonne, so sorry you are having such a tough time. This PSP is very hard to manage at the best of times but when you have little or no sleep, well there aren't any words sufficient enough to describe just how horrendous it is.
You are definitely not being horrible or selfish, it sounds like you are 'worn out'. Keep focusing on that holiday in May and I hope you get some rest beforehand so you can enjoy it.
Grandchildren aren't they just wonderful, and your grandchild is just lovely, so kind and sensitive. Offering a hug, a simple thing, but oh boy it means the everything.
Hope George settles for you. Sending you a really big tight hugNanny857xx
Thank you Nanny857 she is a beautiful child, I should really say young lady, we were having dinner, she said to well then how was your week, she made me smile. George could not keep his eyes open, he is snoring. Hope you are ok? Yvonne xxxx
I'm doing fine thanks. I'm now at my daughter's to look after my 2 grandchildren tomorrow. W will get the train down tomorrow and we will pick him up at the station. So I'd better get some sleep while I can as the little ones will probably be up around 6 in the morning. xx
Aww Yvonne I completely understand you! Have you thought about George going into respite for a few weeks? If not, I think now is the right time! Please darling don't let this do what it's done to my mum! The pure exhaustion is intolerable, I know!! You can't go on like this! Your not superhuman none of us are! I know we think we are, but we definitely are not! Please darling tell George the time has come, let a nursing home manage, they can!! Remember their staff do a shift and go home! They then breathe! You need that too 💋 X
I am so sorry that things are so bad for you and I know just how you are feeling right now. As you know, P has been in a nursing home for some time now and although I hate to admit it, it has been the best thing for us both. P is safe, settled, well cared for and stable and I am ME again. I visit daily so I know all the staff and I try to create a happy atmosphere around P.
It was the hardest decision of my life to put him in the nursing home but I truly think it was the best thing I could have done. He knows all the staff and, more importantly, they know him - because I tell them about his very full life so that they see him as a person not just another patient. We laugh every day (sometimes really silly things) just like we would at home and I tell him how loved he is by all the family (who visit often).
Before P went into the home I was on my knees and desperate to get away for a holiday but now I am content with the occasional day out because I would miss seeing him !
Please look around for a GOOD nursing home before it becomes an emergency. Once you have made the decision you will feel calmer.
Yes, yes. Last night the agitation was incredible. Nothing works. Ativan/Lorazapan is useless no matter what the dose. Nurse coming today to suggest alternative drug, I'll let you know what she suggests.
Cuttercat feeling sorry for you, it is so hard we have that nearly every day, only time he doesn't do it is Monday and Friday when he is at the centre. Hope DN was some help xxxxx
No he doesn't do it there, took him out today, we went shopping again, with granddaughters, he started to get a bit agitated but it passed, keeps touching things. What a lovely day today its been. Yvonne xxxx
Hello Yvonne, just read your post as I have had a weeks respite, my first. I have same problem with my husband and the agitation despite two sleeping tablets at night . In the day it's fixation , got to see the clock, trying to rise chair to get up and walk, he has no mobility at all., or constantly moving cup till it falls on floor and so on. The sleep deprivation is terrible, I can't cope , I shout and even bang around , then feel bad. This week away I have slept in late morning, slept in the afternoon and again in the evening !! I dread getting back into routine. I get 3 hours a week off as they can't find a day place. Carers put him to bed and shower him 3 days a week. I get him up each morning. I can hardly move the hoist I find it so physically and mentally exhausting. I'm already wondering how or when I get another respite week. To top it all he's been upset all week in the nursing home and cried each time he was visited by the children, not because he was not OK in the home but because he is frustrated at the illness and he can't manage to do anything for himself. I think it has made him realise the illness more because I've not been at his beck and call day and night. It's so hard isn't it.
Anyway enjoy your May break when it comes , with love , GW
You are so right it is so hard, the agitation is the worse, calling all the time, asking me to help him, feel like after 2 hours, tablets take to work, feel like I just want to run away. Do you not get CHC? Seems like you need it? Can't wait for my break in May. Yvonne xxxx
Yes we get CHC since January, this was my first time of respite. Not quite sure how I get respite again, whether I apply or is it offered ?? It took since Jan to get this last week.! I know exactly how you feel. The kids say " he can't help it " I know that ... Doesn't stop me feeling like running away either. It's a shocking illness to contend with . Xx
Anne (heady) would be the best person to ask about restbite? I think if the children had to do what we do day after day, they would of been long gone. My brother normally comes down when I go away, he is an angel. Yvonne xxxxx
You're not being selfish. This must be incredibly hard on you. I don't live with my father who has PSP and I have a hard time coping sometimes. Your life now revolves around your George. You need to know that you are still a separate being and it's OK to feel the way you're feeling. You're doing the best you can. Sending you a hug from across the pond in New Hampshire.
I do not know how long you have been going through caring for George, but it gets very draining. Knowing someone is depending on you at all times is tiring physically and also emotionally stressful. Also , not knowing what the future will bring is frightening. Not sleeping is the worse. Human beings are not meant to function without sleep. I hope your days and nights get better.
Thank you, I have been caring for George for more than 3 years, diagnosed in 2014 and again in 2015, but looking after him before then. It is hard to function without sleep xxxxx
I'm afraid I could not do it. The uncertainty and length of suffering for both patient and family is unbearable. Most things I've read says there usually comes a time when a long term facility is the best answer. I believe that also has to do with the personality and level of awareness of the person with PSP. The cognitive changes are very hard to work with. If someone is hard to move and they cannot realize they are to try to stand, it's hard. I prAy to have my husband at home always, yet realize that may not be possible. Good lu k to you. I hope you have a few great days to balance all the bad and to bring some hope and peace.
That's wonderful that you are able to forget some of the bad. I am trying to appreciate what my husband is able to do and enjoy today, and take it one day at a time. My children love him dearly and are having a hard time with this. I am encouraging them to take time to help him have a great summer and trying to prepare them that he may never get any better, and will probably get worse. It is heartbreaking to see their sadness also. Let us embrace those good days and precious moments. .
You are so right one day at a time is all we can do, my children have distanced themselves a bit, I think they find it easier to cope with? My grandson who is nearly 6 is the one that is not bothered by it all, will even help his granddad to eat, weird, maybe the age not sure. Big hugs to you Yvonne xxxx
Children are amazing. We have 2 granddaughters , 6 and 7. The one tries to talk to their granddad and the other is afraid. It is easy to see who nervous he makes her. She has seen him fall etc.. Our 10 year old grandson is nice to him, but you can see how different it is now . Dan always loved children and wanted to be a wonderful grandpa. Just another think this disease has taken.
That is so sad. Chris was able to spend a lot of time with our youngest grandson, now 10.
They were like mates and I feel so glad that they shared those precious times. But the child found Chris' disease very difficult to accept. He was distraught at the loss.
Jean it is horrible isn't it, the children I think are worried about granddad, but there is no connection there , not sure what it is, I wished you could see how Charlie is with his granddad. Charlie was at our house last week, he asked for pancakes, I got it all ready for him, and he said granddad if you are good you can have a pancake, he will even help me pull George up on the chair, maybe because he is so young? Don't you just hate PSP takes everything xxxxx
My sister has just started with agitation. We have tried a new drug for this called Nuedexta. Only one week into the drug so it is a bit early. Her mood will swing from sad to agitated. Right now we are only having about three episodes a week. She keeps wanting to leave and 'go home'. SO.... I found that putting her in the car and taking a drive with music calms her down. By the time we take our 30-40 minute drive, she has changed her mood and we get back to normal. I play the songs from our teenage years 1970s and that helps so much. I have heard that music can work miracles..... and in my situation with my sister - it seems to be the medicine that does the trick.
I do have a question for you, because I am watching my sister's urination habits. She seems to be able to hold her bladder for a long time. I will put her on the toilet and she will not go, even though we had the same amount to eat and drink and I have urinated twice - while she does not. Then in the night she will urinate in her adult diaper. When was it decided that George needed a catheter? I am thinking that as long as urination occurs at night, then all is good. Reading this post has made me realize I need to ask her doctor about this and make sure I am looking for all the signs and symptoms of a bladder problem.
Please get a night caregiver so you can get some sleep..... you are not good for anyone - especially George if you don't have sleep.... What would happen if the caregiver would just let him walk around? In that way he would get what he wanted and maybe you could get some sleep.
George has had a catheter for about a year, he was having so many accidents. He can't walk by himself anymore he is in a wheelchair all the time. George could urinate at night, but was missing the bottle, wet bed all the time . Yvonne x
Thanks for the info. I have a pad that is leak proof - cotton fabric on one side and plastic/rubber type material on the other which contains the urine. It is washable so I have several to use. Plus I put adult diapers on her - they work well - sometimes they leak which is why I use the large pad. She also always has the adult diaper on during the day.
This condition is so challenging for the caregivers. I do get frustrated at times, and it is usually at the end of the day when I am tired. Yet..... It is not so bad that I would consider a nursing home for her.... not yet. But maybe it hasn't gotten really by for us yet. One day at a time is what I do. If she is having a good day - I cherish it. Because as I read all the posts, I can see that it can get so much worse.
I have only just seen your desperate post; felt so sorry for you, then realised that I'm the one with psp -still reasonably early stages but mobility is a problem: and that my husband may, in due course, feel the same way as you do. He says he is determined to look after me no matter what happens, but he is older than I and gets very weary already. I feel dreadful about the effect on him so will try hard to need him less and to persuade him that he should look after himself rather than always dancing attendance on me.
i hope you have been prompted by some of the advice given by others and that you will get, at least, a night time carer for your husband; it is essential for you to be able to get some sleep.Next weekend is Easter and it will be the middle of April so May won't be that long coming. I really hope that you can enjoy your holiday, but you won't get the best from it if you are so exhausted at the start!!.
Thank you Ann, I am sorry to hear you have PSP such a horrible illness. Your husband seems like a very caring person. We had a shopping day with the grandchildren today, guess what George went to bed so tired, then we heard noises, only to find he wanted to get out of bed at 9.30, so sides went up on the bed, now he is banging the sides of the bed, feel like it is going to be a bad night again. Thank you for the hug, I need it Yvonne xxxx
Ann, I can not even imagine how frightening this must be for you. Every case is So different . I read a post from a woman who's husband has had this disease for over 10 years. She said he had times when things did not progress and he went into a sort of remission . His first doctor reccommended he take CoQ10. She said she does not know if that is what helped, but his disease has progressed much slower. I am going to ask my husbands doctor about it. Good luck to you.
My name is Dr. Charles De Peri, Jr. and I am a pharmacist for Qunol CoQ10. I wanted to provide you with some information on choosing a CoQ10 supplement.
CoQ10 has a variety of benefits, but you may not be able to experience the benefits if you are not absorbing your CoQ10 supplement.
CoQ0 has poor absorption, therefore, you should choose one that is both water and fat-soluble which is better absorbed by the body than regular CoQ10.
Please note that my comment is provided for informational purposes only. It is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician with any questions you may have regarding a medical condition and never disregard professional medical advice or delay in seeking it because of something you have read.
It seems rediculous that doctors can not find a way to help you with that. Could any medication be working adversely and making it difficult for him to rest? My husband takes a medicine at night to keep him from having to urinate, the pharmacist said it also makes him tired. Our problem is that he is exhausted by 9 and then wakes up at 2. Lately he seems to be getting weaker. Is that common for this disease ? Also , his right side is more rigid. How much mobility does George have? Can he help to transfer himself? Thanks...
George can't transfer by himself with help, we have a rota stand, 2 people 4 times a day. He is in bed by 8 o'clock, he is ready for bed then, we don't let him go back to bed during the day anymore, find it is better for him, helps him sleep all night. Getting different medication from the doctor, hopefully it will help him. Yes I think the weakness is part of the illness. George has still got quite a bit of strength in his arm, and George's left side is more ridge he drags the left leg. Had a bad night on Sunday night, he was at the centre today, so very tired when they brought him home. Yvonne xxxx
Hi, Yvonne. I just read through all 86 messages here. I'm sorry I haven't sent you a hug earlier. You are having such an awful time.
My sweetheart was having bouts of agitation, too. Wasn't sleeping soundly at night and then too out of it to eat in the morning, falling asleep with food in his mouth.
I asked for respite as his day aide was off on vacation and I couldn't take time from work or find help. The doctors at the unit said the agitation could be caused by poor sleep rather than the reverse and that they would try to find the right medication while he was there.
That was more than a week ago, and it is now doubtful that he will ever come home. He has gone downhill so fast. He isn't eating or drinking enough. Three weeks ago I was able to get him up and down the stairs at the weekend place. Now he can't stand.
I finished the necessary work at the office last week and am not going in now. I am trying to bring him back. I am not ready to lose him. But...
Compared to what you and some of our friends here are going through, have gone through, clearly this is far, far from the worst path. Sorry as I am for us, oh, Yvonne, you are being put through the mill.
I would like to bring him home again; there would be hospice to help. I want him to live to see his new granddaughter. I have told his daughter that his time is short and she should come soon if this is important to her, as I know it is.
Oh dear I hope you can bring your sweetheart home, to enjoy Easter and hopefully see his new grandchild, would be the best present in the world. Sending you a big hug, I think you need it, just as much as me, I hate this horrible horrible illness, destroys everything. Big hug Yvonne xxxxx
Sorry to hear about your situation. I have read it is okay to vent and remember that is the disease you hate and not George. Since I bear the brunt of most of my own care, I have a hard time loving myself because of IT. It's taking everything from me, it seems. I get disgusted with myself daily. I have to fight with some doctors who treat me as if I am highly contagious because they are largely ignorant about IT and how to treat me, both medically and personally. I have always prided myself on my manners and my respect for others. I am losing my grip on both fronts, leaving me a bitter, grumpy old man at age 57.
You are not being horrible and selfish. You are being human, with all of the imperfections and frailties that entails. The very fact that you recognize your struggles and continue to fight for George, in my humble opinion, makes you a superior human being. You are accomplishing something not many others have been able to do. Take pride and credit from this and know that I, for one, admire you for your honesty and loyalty. Live in the here and now and try to find someone who will care for the carer.
Oh Yvonne, I'm sorry for not responding sooner and I hope things are a little better now. The agitation you are describing is what our doctor called anxiety. We tried a few different prescriptions until the right one was found, what works for one person may not work for another, and when they stop working it seems to happen overnight.
I hope you are getting more help and maybe thinking of either a few days respite for George or a long term care facility. The decision is hard, believe me I know we had to do it, but the outcome was everyone's sanity. We didnt have to sorry about serious falls, showering dangers (even thought her bathroom at home was wheelechair friendly it wasn't right) or docotrs visits.
Our visits were just that, visits and they happened daily.
I hope you find some peace for you and George.......
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But being without Don is just about killing me.
