We all ask that one and to be frank we can never be good enough. We are not a three shift team of class A carers getting breaks and having a social life and we love the one we care for and have all that loss and heart pain on top.
We can only do our best. Then there is the paradox, we have to preserve ourselves too because if we collapse then everything goes awry. So the caring we give has to be limited.
It is tough indeed.
Now I will add the various PSP behaviours: Failure to comprehend the carers needs and limits, obsessive behaviour sometimes and in my case caring for an an ex social worker who wants her rights too!
Tonight Liz asked for her handbag and telephone when she went to bed. Most odd. We have had a good day with love and warmth. Twice in the past she has triggered Police visits saying I could not cope and that I needed help and the second time I was refusing to get her out of bed. The second time she was being so hostile I was trying to contain the situation by saying, "It is not safe to get you out of bed. I will answer all of your needs when you call me, but please just take an easy day." She called the police to complain and wailed down the phone only managing to get her address out!
Police interviews are humiliating no matter how nicely they do it.
She was non-plussed after the events and said she did not mean to do that.
Nothing came of it, but our address is now marked in their files.
So tonight I was actually frightened to leave her with her mobile phone. Unusually she insisted on having her hand bag and mobile phone with her. What was she going to do? Her hand bag is her walk away kit of purse and all. Was I up for another Police visit?
It broke my heart to tell her I did not trust her and she could not have her phone.
This is PSP!
Liz loves me to bits and we have a very loving relationship. We are mostly good together and have good times and hugs, but sometimes PSP brain kicks in and hell happens.
I am now frightened about what she might unintentionally do.
The shame of the police. and, being a private person I hate the the exposure of incessant visits and intrusive interviews from professionals, whom we need, into our private lives.
PSP is tough, even whilst their is love given and warm responses received.
PSP brings elephants into our rooms. With them come struggle and some shame.
It is the carers lot.
Warmly
Kevin
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Kevin_1
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Kevin well said. We go through this journey not knowing what our loved ones will do, will it be a good day, our are we going to get one stressful day.
Some days you feel so tired, and how you so wish that everything was normal, and we could be planning our retirement together, the way we thought it would be.
George could not use a phone if he wanted too, my heart goes out to you both, I am sure Liz didn't want to call the police, this illness PSP is a hateful sickness.
We have a couple of good days, you think this is good, then the agitation starts and I feel like screaming.
Kevin George tried to get out of his chair today, he says he is going to build an extension, he is going to dig it out, just wants me to watch him.
Big hug for you Kevin, you are doing an amazing job of looking after Liz. Also all you other careers you are all amazing people. ❤ Yvonne xxx.
Yvonne , this made me smile, I have things like that. He says he could do it , it's me that stops him from doing these things and " he's had enough of me stopping him" xxx
And when I put her to bed just now and turned the lights out we had a hug and affirmed our love... PSP... I never quite know what will happen next. I dread the day she leaves.
You are Superman! And an example to us all! And Superman was only a normal human being beneath when he took his suit off!
We all understand the daily struggles you have and the problems they bring. Where are those wonderful Bulgarians when you need them?!!
You know we are all there for you and with you both every step of the way!
Love and hugs to you and Liz! Bring in some lavender and other smelly herbs from her garden, along with the phone and handbag. Should give her something else to focus on!
Thanks for being there. It all starts with Liz getting an idea into her head, like a three years ago when we had no carers and then her doing something ill thought through, like bursting into tears in the day centre and saying, "I can't go back home." Of course they hit every red button in the building. Only later did Liz explain that she knew I was struggling and wanted to give me a break. She was shocked when she saw what happened. So now when she goes quiet and does something unusual and refuses to explain. I get very nervous.
Thanks for being there. I love the herb idea... We have some Rosemary in flower I shall put a sprig in a bud vase on her table by the setee.
So sorry to read just how bad things have become. We are all just humans trying to manage the best we can with a disease that few understand or care about. (Yes, I'm referring to doctors too.) Our cries fall on deaf ears and we are told to man up! My cardiologist actually told me yesterday that he will not prescribe any more medications because he is afraid of losing his license and being unable to pay his bills. What a effing coward.
I think you are the best thing Liz has going for her. You have my admiration for the way you deal with unbearable circumstances and keep such a positive outlook. I can't imagine having to deal with the police. You inspire me and for that I will be grateful to the bitter end.
Oh, no. These are the good days. The first police thing was three years ago. I explain it more just above your post. She did not intend to involve the Police that time. The day centre panicked when she could not explain why she did not want to go home and she kept crying. She was trying to leave because she could see that she was wearing me out. We had no care support then. The second time, last year, she just wanted the Police to tell me to get her out of bed. She did not expect them to come round.
So when she was being a little furtive last night I found myself getting very nervous. She might just have wanted to give the carer some money to give me a surprise. They get on very well together.
Yesterday was a tough one. My respite was pulled because of carer car issues and the same is hapening today. They also had to cancel two care inputs.
Sorry about the misunderstanding. My mind has been cluttered and rather distracted this last week for reasons I don't understand. In any event, know my heart goes out to the both of you. We live a surreal existence which often defies explanation. Hope the issues with your carer get ironed out ASAP. You deserve all of the rest you can get.
Kevin I know exactly how you feel no two days are alike. I managed with my husband daughter and granddaughter to get a family day out yesterday, I cannot remember the last time we did this without receiving a phone call as to where I was and what time am I coming back.
It's extremely hard for the carers it's as though your life has been put on hold and no matter what we do there is a piece of elastic that keeps bringing us back, we deal with the good moods and the bad moves take the abuse and why! Because we care and love them.
A while ago I had to go to the hospital with my mother and the doctor got quite agitated as he asked her to do certain things which bless her she tried to do. In the end I snapped and asked was he aware of psp his reply no, well I said before you ask my mother to attempt anything you ask her to do best check it out . He attitude changed somewhat when he came back. Whether he had looked it up or not I will never know.
Keep your chin up Kevin here's to another day
I know exactly how you feel too Kevin. The days where it seems too much and we cannot bear it any longer seem to getting more and more frequent. Just dealing with my Mother is hard enough then the daily barrage of phone calls from multi disciplinary team, medical appointments and home visits...none of which seem to actually help. Combined with lack is sleep and the lists goes on! This forum is my sanctuary and being able to let off steam here is where I find my sanity again.
We know what you are going through Kevin and how you find the time, energy and desire to help us here too I do not know. You really are Superman! Don't worry about the police it really doesn't matter in the grand scheme of things.. Just try to have an easier day today if you can?
Liz doesn't meant harm. Its just PSP making her half cocked sometimes.
Yesterday was a tough day with my respite being cancelled and a load of overdue paperwork still not got to. Then Liz needed more attention than I could give throughout the evening and when the carer was taking her to bed this odd request.
I came downstairs for my two hours quiet time and was surprised to feel vulnerable with her having her phone because of the past (three and two years ago). The thought of not trusting her was horrible.
Anyway when I went up to turn her T.V. off she was relaxed and gave me a lovely hug and kiss goodnight.
Mum told me the other week I had a serious problem in my head and I was evil, then two minutes later was saying she was so worried about me as I'm so stressed and exhausted. I worry what she tells the carers I'm doing to her or rather what she believes I'm doing. Not an easy ride this journey. Glad you got a nice hug last night.
Certainly keeps us on oiler emotional toes. That's what I find hard to deal with too is the swing between laughing and crying in seconds and what starts off a good day turns so bad and vice versa.
Hope the good days continue on xxx
Oh Kevin, so much rings true here, I really struggled with my dad's inability to understand that I need my time with my family & his constant neediness, he asks so much of me but I know now this is only out of desperation.
Awe darling Kevin, it's sooooooooo bloody hard isn't it?! My heart goes out to you!! You are a truly amazing man and one that I adore! Don't beat yourself up! Psp try's to destroy us all and it's simply hateful!! Keep your chin up my friend as today is a new day!! ❤️ X
You are much more than good enough Kevin. You are one of the best. Others give up where you struggle on. Lots of love and hugs to you and Liz neither of you deserve this horrible stuff XX
In everyone else's eyes, including Liz's, you are brilliant. I totally accept, through your's, you have a lot of doubts. But Kevin, who else is there? Who could do all the things you do for Liz and then give her a big cuddle at the end of the day. Liz is one lucky girl. Some days, when things were tough, I could barely speak to Steve. Even during those last week's, he managed to spell out on his board, "I have told you a thousand times,stop bullying me!" I was only trying to get some much needed fluid into him, to keep him alive. I gave him a huge mouth full of abuse and ignored him for hours.
He often demanded the phone, through signals, but who he thought he was going to speak to, I had no idea. It's almost funny, looking back on it.
Things you could try - Always make sure her mobile phone is dead,at night. Take the battery out if necessary. Try and find an old fashion phone to connect to the outside world, yours having "broken". Of course, make sure you have the mobile type hidden, but easy access. I know full well you won't use any of these methods, to stop Liz phoning out. Just thinking you could do it,might ease the stress!
Steve lost his ability to talk, very early on. I always thought, that was the worst symptom of PSP, so I have never been through this. It sounds horrendous, although I am sure, with a bit of thought, you can find ways around, even if they do contravene her "rights!" PSP tore up the rule book up years ago, occassionally we have to remember that and treat it with the same disregard.
Another thing you could do, is contact the PSPA. See if they have any literature on this sort of thing and have it ready, if the police come calling again. Or drop it off at your local station.
The elephant in the room is definitely PSP. Once this "little" problem goes away, unfortunately it will find another to replace it, with exactly the same stressful results.
Hang in there Kevin. We are all with you, holding your hand.
Yes I have periods where I can barely speak to Mum and she accuses me of bullying. It is like ground hog day with the same conversations that I'm only trying to keep her as well as possible.
Big hugs to you lovely. Hope some days you have are more happy than dark. Xxx
I try to keep the phone by her as she frets that I might suddenly die, or fall, or something and she wants to be able to get help. However there was a certain furtiveness last night as well as the unusual request to take her hand bag up to bed and I feared the worst.
The first time the police came around, three years ago, they were assessing me as a suicide risk. Something Liz must have said to them. I let the officer get well into her interview and then just had to stop her. She was making so many errors.
I told her my profession and asked if I might ask myself the questions as well as what to observe in my tone posture and movements. She thanked me profusely for the session when she left with a big smile. It was a comedy indeed!
The second time all she had done is cried and wailed down the phone. So the officer had to look into things more thoroughly. Even so he was gone in fifteen minutes . It was just a horrible experience.
Hope your wife has calmed down for you and you feel better in yourself
I've not been on this site very long but what I have read you are an amazing person who looks after your wife wholeheartedly and also you continue to help and advise others on here with all your knowledge
I applaud you for your strength at home and also with who you help with advice
Well said Kevin. Even though I'm a cared for, I'm trying understand and appreciate all that you and the others in the group do for us... the cared for, while I still can.
I often wonder how it must be to read posts by carers when one is the 'victim'.
It must be hard.
When Liz first had her diagnosis she read the site every day for hours. She then fed me the information as ans when we needed it, but she did not trouble me with some of the struggles people had. She was very brave and together. I imagine you must be the same.
Hugs, I sympathise entirely. It's like being between the devil and the deep blue sea, as the saying goes. But I think you did the right thing it's so difficult to explain the irrationality of the illness. Today my husband tells me the catheter is in place to stop the bowels working and it's not doing its job. Yesterday he wanted me to hoist him out the chair ......he wanted to mow the lawn. You wouldn't believe the row over that , finally I told him to ask our son to hoist him out to garden the weekend and they could do it together. And so it goes....on and on. But get a health visitor here and he's as sane as can be. GW
Aww GW!! This sounds sooooo familiar!!! Why do they truly believe they can do these things? What am I missing? I actually don't get it!! The times my Dad says help me outta bed (without a hoist) n he'll be fine.....I get soooo tired of arguing the point!! X
Keith used to do that all the time, wanting to get up and do something positive when he obviously wasn't able to, telling me off for shouting at him which I often did, then in the next breadth telling me that I would go straight to heaven! I used to tell him that it wasn't him that was winding me up but the evil PSP for stealing him away from me!,
He used to tell all his carers that it was me he was worried about bless him, oh how I wish I could have him back with me, but how he used to be before PSP took over him!
Know what you mean, Kevin. Its like being in a nightmare at times.
Today I had a "melt down " with Chris. He hardly talks now but, after all was sorted and I'd got him to bed, he said " You are ridiculous "
I reminded him of the times he falls etc and stormed off. When I returned he apologised. This is a pattern and, like you we always kiss and make up. But it seems as is he is taken over by a big selfish baby at times. Becomes an alien !!!
You can only do your best and from where I am it seems you do a really good job.
Jean so agree with you, it's like having a baby again, my grandson who is nearly 6, behaves better than George. He wants to go into the garden and dig the footings to build an extension, then he says he wants to sale the house, so bizarre.
Having no empathy is the worse thing, our son had a big car accident, someone run him of the road, just went over George's head, our son is in a lot of pain, really shook up, but thank god ok, he would of be very concerned before, I think this is a very sad, they have no empathy. Love to you all. Yvonne xxxx
2013 the year B was diagnosed, I bought him a phone to call me at school if needed...I had a cell phone and he never used the phone....though he may be a very light and bloody mess....but he did not know how to use the phone early on.....or maybe he just did not want to.....
True story....My husband went through a window slicing himself to the point I called emergency services aka 911..... he refused help which after an hour he stopped bleeding and with enoug pressure it remeidied itself .... I did nor call the kids all was fine ......later that night my daughter got pulled over for some driving infraction.... the police man looked at her last name and asked if her father was "Bruce" to which she answered "yes" oh he said we just sent the ambulance to his house....hows he doing....? to which she replied , "What ?" and, well, you can fill in the rest.....I was severely admonished when she got over to our house that we did not apprise her of our goings on....anyway the point being that the cops now knew who Bruce Birke was and his medical needs.......what a night...not the last! haha? not really
I think I feel a little extra humiliated because I used to work along side the Police on cases like this and more complex stuff. Suddenly I am on the other side of the table. Well I guess I should just man up.
You have such a beautiful way of expressing the feelings many of us have. Caring for my husband reminds me a bit of when I had tiny children. I believe I could do a better job if I could just get some decent sleep. Being on high alert for what he may do is a constant source of stress. I can run to put laundry in when he has assured me he will not try to get up, and he does. Three out of 4 times he's OK, but I am always aware of the last 5 times he fell. Unfortunately few are able to be by their loved ones side every minute,. There are chores to do, bills to pay, food to prepare, laundry, etc.. I also have rental properties to manage and some carers must still work.
It can also be very unsettling because my husband has lost his ability to take other people needs and feeling into consideration. I worry that he does not think I love him enough to take better care of him
DAn hAs always been a good natured kind man who enjoyed helping others. Now he can be very demanding. Although that can be very stressful , I can understand . Besides the effects of PSP, he is probably very angry and depressed. He has been given a bad blow he did not deserve and has handled it with great courage.
Sounds like were in the same book... I have only just put the laundry on, ran back upstairs and to get Liz to the commode and now making some lunch for her keeping a sharp ear out for any noises from upstairs. And, I must get to doing the overdue accounts for the rental properties I manage. Multitasking, though very fashionable, is very bad for ones equanimity. Like all carers I can end up completely frenetic from it by the end of the day.
Yes, its that inability to see other peoples needs and feelings which is hard for me to cope with. I think Liz is very angry deep down. She denies it. She has never been an angry sort of person. I think sufferers are often very brave. She never complains and tries to look after me the best she can.
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