Charles went to Emergency Room and they found nothing. His bodily organs are ok, and no UTI. While there he was confused and I had not slept for four nights!
Coming home at 7 pm. trying to sleep, he was wild. Eyes glassy, trying to get out of bed, refusing to sleep. I tried everything and then screamed at him that I would put him away. Of course I wouldn't but I was so out of it. He finally slept and me too.
Now he is excessively thirsty, every five minutes asking for drink.
Is this dementia? I sometimes think so but then he comes out of it since he is in a controlled environment with me at home.
So I feel so guilty for yelling at a dying man and can't forgive myself. What memory will I have when he passes? I and don't know what I'm dealing with.
Anyone have any insights, please help.
CUTTERCAT
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Cuttercat
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Cuttercat don't beat yourself up, George gets really agitated, we think it is the start of a urine infection, check his urine it is fine, I think it is part of their brains shutting down, it is really hard, no sleep, then you can't focus on anything, because you are so tired. When we can't settle George, I usually call the DN and she comes in and gives him an injection, DN has seen him really agitated, maybe you could try calling them, so they can see for themselves. Please don't think bad of yourself, you are amazing, you all are amazing, we are there for our loved ones, always remember that. Yvonne xxx
I’m So sorry. You have really had a rough time. I do not want to think of how tough this disease can get. Regardless of how much you want to care for him, sometimes it’s just impossible . No one can get by without sleep. You are amazing and commmited. I hope you can feel proud of all you’ve done, instead of guilty because you cannot be Superwoman . I hope you find some peace.
Oh my dear, I am amazed by your perseverance! I had two nights without sleepwhen B had a UTI, I rang the doctors in tears and said I couldn't do it anymore. Are you in the UK? There is something here called Active Recovery and as a result of my phone call, I got three nights cover 10 pm until 7am and two carers on four calls a day for a few weeks. Active Recovery is an arm of the NHS. Rant, rail and cry, whatever it takes. Your GP should be there for you. Ours weren't until I sent them copies of the PSP GP' s handbook highlighting all that was wrong with my husband, and all the things that should have been done by them. Don't worry about shouting at your beloved, he's probably so tired, he's forgotten it already. Sending you a great big hug and hoping that things improve quickly. X
I wish we had that type of care here in the US but I don't get anything but a bath three days a week and a nurse one visit a week. Unfortunately there are few options
Pretty sure we all have lost control. How can we not. I think it is the toughest disease imaginable. Please don’t be hard on yourself. He is so fortunate to have you and your love. Being sleep deprived and just plain tired of the disease makes it so much harder on us. I too live in the States (Maryland) and found it very hard to get outside help. I am praying for you, for all of us. Xxoo
Hi, I screamed non stop at Steve, before he died. Couldn't help myself. With hindsight, why wouldn't I shout, scream and kick. My husband was leaving me. I didn't want him to go. Yes, I feel guilty that perhaps the last thing he knew was me yelling, but I won't hold that against myself, I too was dying.
I have so used those words and I have cried for Myself. I miss myself. I was still becoming me~~~I used to think when all is said and done, I would be able to get back to singing and dancing and kayaking . I just see emptiness ahead all around🙁🙁🙁
Oh Cuttercat, I am so sorry for your situation. No, here in the US we don't have the support. I've been told to contact hospice for palliative care, but haven't done so since I don't feel we've reached that point yet, but I know it is coming. I confess I am so scared.
I'm guessing I better look into it now, before our need is acute. My husband's son and d-i-l live about 40 min. away and are supportive, so I'm hoping they can help back me up when needed. They have offered to help.
Anne sitting here with Loam in the hospital he is getting weaker by the hour. Your message has lifted me as I too shouted at him most of the time. No I won't fell guilty as I was loosing my husband each day for the last 11 years. Your message could not have come at a better time.xx Ronnie xx
Very well put! I have a lot of guilt almost a year after Bob‘s passing, but I have to keep reminding myself of what I was put up against. At times, I didn’t know who would die first, he or me. Unfortunately, the journey doesn’t end after your loved one’s death.
Our journey has only just begun. I am sorry you still feel the guilt. We all understand. My husband died on my watch. As his carer and wife, I should been able to save him from the perils of PSP. Once I realised what a load of nonsense that was and I know I did everything possible to help him live as well as circumstances would allow, the guilt left me. We all know you did over and beyond the call of duty.
How I sympathize with you, Cuttercat . I feel guilty every day for losing my temper with my poor suffering sweetheart as I so often did. Try now to hold onto memories of the good care you have given, the sweetness of your loving moments. Don't let the hard times overwrite the good ones. It's a struggle to reclaim them later. I am so grateful now for the separations we had, because I have our history in emails from those times to remind me of how happy we were and how much we loved one another. Don't be unkind to yourself. I'm sure Charles wouldn't want that, aren't you?
Sometimes I think the anger we show our loved ones, to our loved ones, demonstrates that we care. We don't express such passionate anger to strangers. When you feel loving.... tell him how much you love him and that you ask for his forgiveness for having lost your temper.
I do think much is forgotten by our PSP loved one. Often my son would beep his doorbell summons and when I would come to him he wouldn't know why he had beeped for me to come. I would ask him to please not beep if he didn't know what he wanted because I was trying to eat/wash dishes/ etc. He would let me know that he understood and within minutes he would beep again.
I think we provide security and love to our PSP loved one because we are there, and that is comforting....even if being there is yelling and having a melt down.
If your loved PSP was without PSP he would rationally understand why you yelled. He is sick and cannot express his understanding. Forgive yourself for him because he cannot verbalize his forgiveness.
You are doing the best you can. He may be as tired as you if not more tired which leads to strange behavior...like not being able to sleep....one may be come hyper and just downright wierd ...excessive thirst can be caused by a myriad at of things,,,,fisrst in my mind is dehydration with diabetes as a close 2d and believe it or not low sodium can allso affect thirst. B had low sodium, though he could not respond to the need for water as he was on a PEG, but dr was worried about his sodium.....I can't remember what I did...oh less water....I was putting too much water with each tube feeding. If husband has a dr you can trust, talk to him about the issues esp. sleep and thirst.....though it sounds like t youve already done that .....
One of the things I did with B was exercise daily. I wanted him to keep muscle tone and have some activity. A fatigue can come over a perspn who is sedentary. give him a reason to sleep ie tired from exercise and he may sleep better.
My biggest insight is no guilt, please ! Two things I have learned is.... I have no guilt nor do I ponder any "what ifs".....I am sure I could have done a better job just as sure as I couldn't have done a better job......I did the best I could for Bruce. I loved that man more in his last 4 years than in the first 30years of our marriage....and so have you with your husband, CC so have you with yours....now go get somebody to watch Charles and get you some sleep. Do you have hospice I'm afraid and I haven't kept up with all the posts.....If you don't have hospice, get it. Medicaid will help you get it....and if you are over 57 with a disability , you can get on medicare ....
My husband was doing fairly well, whatever that may mean, but then had to have a tooth pulled. No anaesthesia, but numbing shots that included lidocain. It has been over a week now and he has not had one "fair" day since. Any experience with or knowledge about this sort of thing?
Hey cutter.
Is he a diabetic, just throwing it out there because low and high blood sugars can cause all kinds of mental confusion,anger just a lot of unrest. Sorry to hear of the roller coaster your on.
Dear CC, don't beat yourself up you are only human and we can't get by with no sleep. Ben has recently changed his behaviour, very agitated, talking out loud to himself but I can't understand a word of it. He was very passive before but is now once again trying to get out of his chair, managed to squeeze himself out of the end of the bed two weeks ago and had to call ambulance to get him up. Basically becoming more demanding although miraculously he has regained some arm and hand movement. I just don't understand it and I know I get a bit tetchy with him as he keeps calling me ( in his own way) he wanted to read the newspaper, make a phonecall, use the iPad, all things he can no longer do but he thinks he can. As I said before we are not saints and I defy anyone who says they never lose it a bit!
Kate George is just the same, told me yesterday he wanted to hold my arm and walk, it would be impossible for him to do, told him he would have a nasty accident xxxxx
Yep Charles is all over the place. Stands up from the wheelchair and I have to talk him back in it. Their brains think they still are working. So sad isn't it but need to keep them safe and herein lies the problem. Have to be vigilant all the time. Charles is so skinny I fear the hip fracture
Last night i said some very unkind words to rog, i am feeling rough with sciatica and a bad cold, so was not patient when he said he wanted a poo four times and then just sat there!
Lo and behold there are all these posts mirroring the guilt i feel this morning!
Some wise words come before mine which I have personally found helpful and reassuring. I have never been a ‘ shouter’ until PSP joined our lives. Sometimes I surprise myself and then as you do feel guilty . But agree with previous posts you must try to let this go, you are still there caring, supporting and loving despite the exhaustion and at times overwhelming challenges.
I have just seen this while looking through the postings on here. Don't punish yourself for being human. I have shouted and threatened not to visit Led. Needless to say, lime you I felt incredibly guilty and rang the hospital to reassure him that I didn't mean it. We all have a breaking point and if we didn't we would instantaneously combust. We are all suffering while we try to encourage our partners to try to get through the next problem arises.
Don't be too hard on yourself. You are battling PSP too.
The caregivers are made also with flesh and blood. Have a limit. There are ocassions when the capacity for resistance reaches its maximum and suffering, fatigue and frustration overflow.
Apologizing is always good, it is also good that the person with PSP or similar understands that the caregiver also suffers.
There is a French film: AMOUR (2012, written and directed by Michael Haneke, starring Jean-Louis Trintignant, Emmanuelle Riva and Isabelle Huppert) that describes with precision the emotions of the sick person and their caregiver. The end is very hard and debatable but the film is interesting.
The summary is that the caregiver suffers a lot too and has limits. You have to learn to understand and forgive yourself even though others may criticize you.
As always I am strengthened and consoled by the comments here.Just to know that I am not the only one who became impatient with my loved one is a help in itself.It is four months now since the death of my husband of 53 yrs and I struggle every day with guilt -that I should have had more patience and been more loving and understanding.Yet as I read here we all have done the best we could at the time.Don was always so passive and uncomplaining and I think that is what hurts me the most.If he could be so accepting of his disease why couldn’t I ?One of my fondest memories of those tough times is when things so absurd would occur and you don’ know whether to laugh or cry.So try to laugh if you can!
Cuttercat it's all been said? You have been great. So stop feeling so guilty. You are just human. You would have to be a saint not to lose it sometimes?
Just tell him you love him and he will forgive you for shouting. In the scheme of things it's not much to forgive?
How all you people in the US survive is beyond me. The NHS for all it's faults and there are many, well where would we all be? We get a lot of help. Nothing is perfect, and it needs more money but they work so hard for us all? Thank you for innocently reminding us all of that too.
I too, have yelled at my husband. Especially when I catch him trying to get out of the chair by himself or when I'm tired or in pain. One thing that has helped is that I got hospice for him. Not a lot of care , but someone to give him a shower 3 days a week helps me because I am very small a have a bad back. In Missouri hospice provides for 5 days respite for the caregiver. I just took those days, sleeping, getting massages and being lazy. O am refresehed physically and emotionally. My husband was in assisted living those days. He's so sweet....he didn't put up a fuss. In fact he said he enjoyed himself.
I'm sorry - I have no useful insights excepting that caring for someone with PSP has for almost two years, regularly, pushed me well beyond my limits. I only realised that when the first Nursing Home said that they did not have the staff to put in sufficient care for her. Also, now she is in a Nursing Home I can see just how heavy the caring burden had been.
I have so much guilt for the angry things I said and for not being able to go on providing care at home. When I catch myself feeling like that I tell myself that I am merely human. I have my limits and I did the best I could.
John is very confused at night and if he is not sedated (phenergan an anti-histamine and a form of diazepam) he is up and down all night. We saw the neurologist on Monday who told me that the form of dementia called Lewy Bodies comes in the later stages of PSP. This makes sense as PSP is a parkinsonian illness and Lewy Bodies is associated with those illnesses. I should get some drugs for him. I stamped my foot and said if I didn’t sleep I couldn’t care for John. Xx
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CBD hallucinations and confusion 
New to PSP and utterly confused
