(I have just finished this post and have come back to the top to say that this is just 'living with PSP' - The sound of the wind in the trees sometimes raging and sometimes whispering - It's justis as it is and I can't change that.
Liz and I have been through a bad patch (or two) and I've been struggling.
Looks better now.
This is a v e r y shortened version:
We were having lots of trouble with the new agency - "Can't do this" "Can't do that". One lovely carer was pushing the wheelchair through a door way which only had a little clearance and said, "This is a health and safety issue." I so wanted to tell her, "No, it's time to get a life issue."
So I got an OT in and he passed everything as good and safe practice... and I told them. Next a new carer arrived and I did the whole induction thing... A couple of days later I found out it was a junior manager doing an undercover assessment! She arrived the next day to fill in and I quietly told her that it was unethical to do such a thing, but please come in anyway. She ran off screaming that I was being abusive. The manager then telephoned me shouting that she could not put staff in to be abused. Well fortunately for me she also telephoned the CHC and shouted at them.
I reluctantly sacked them. (And have drafted an evidenced based account of their behaviour to send to the CQC inspectorate.)
The odd thing is that the house is so much more relaxed. I don't mind the work and we are not hanging about wondering when the carer will turn up. I don't have to have a dose of attitude first thing in the morning or last thing at night.
Then the very next day Liz had a big step down. OT came back and new equipment installed.
Then Liz went into a twenty day 'bad behaviour' phase. Laughing, making walls of noise and talk when I am trying to find out what she wanted or move her. Agreeing that she wants something and then when I am half way through doing it saying she meant to say 'no'. She even perfected saying Yes so that it also sounded like no and then laughing.
This leaves me shaking and ragged. My equanimity evaporated an long time ago... I could not remember when I last enjoyed tranquillity or calm. Certainly a year ago or more. So then my functioning diminishes and making a simple meal feels like climbing a mountain with a weight on my back.
A week ago I was doing the morning tea and coffee when the doorbell rang - It was Lizzies sister from Derbyshire - 3 hour drive. The night before Liz had called her and said that she must come down urgently and not to tell me she was coming. Eventually we worked out that Liz had decided I needed support and she knew I would refuse for her sister to come down on a working day (She is in a high pressure profession). Well I made lunch for us all and Liz got family time. (screaming to self - another day lost to doing all of the chores that are stacking up).
On Sunday she opted to stay in bed. Then early afternoon she started winding up again and then asked to get up. I couldn't face it and asked her to remain in bed. That evening there was a knock on the door... The Police! She had called them and just cried and wailed down the phone. She did however manage to give our address.
The policeman was very nice and after interviewing her (She just cried and said she wanted to get up) and me and seeing me doing some caring he left.
Minx!!!
Yesterday I called the CHC and again asked for respite care. For the third week running the CHC have been trying to find a respite bed. The hospitals are grabbing them all (via the same CHC) to prevent bed blocking. She said she wanted to go into care for good and leave here and me. I was gutted!
Then yesterday she went calm and quiet. We were packing her stuff (hoping for a bed) and I quietly reminded her of the things she would forgo in care... inc. her beloved moggie and that after a week away we could talk again about her decision to go into care permanently.
At some time in the night she had a big step down. She is further from me now. It's like watching someone you love drift down river. It gets harder to sing out to them, harder to see the details you remember.
But it is I who must not go around the bend - Just got to keep adjusting my head to new realities - take each new event in my stride - just keep finding holes in the ice where I can come up for air.
Today is a good day - Liz is being sweet and smiley and I have some calm in my center.
Waiving warmly to you all.
Still a survivor.
xx
Written by
Kevin_1
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Oh Kevin and Liz !! How this disease tests our relationships !
I can really relate to your description of Liz drifting away down a river and trying to hang on to your memories. What is reality.
Chris is the opposite to Liz. He can't use the phone or talk much. He withdraws, is impassive and stubborn. He will say he wants me to divorce him and me get on with my life. I know he doesn't mean this but get into silly arguments with him. Anything rather than the silence. He was a quick, volatile person and its hard to lose him.
I had a weeks respite in October and it makes you realise the stress you've been carrying.
So far I don't have any carers as I prefer it - until I have to. When he can't stand, I think.
I so relate to what you are saying re. stubborn. Liz has always been stubborn and a rescuer (not always a good thing). PSP has redoubled her stubbornness. It's probably something to do with lowered mental processing.
"Divorce and set yourself free". He must love you an awful lot to say that.
I get tired of Liz going on and on about nothing, but now her speech is really diminished and I miss her calling to the cat in her high tone... its a slurred growl now. Yes, anything is better than silence.
Thanks for your meaningful post and the love and hug. It is so sad isn't it.
You are human and to me sounds like you are doing your upmost best and that is all we can do. Our own thoughts on doing something better are our own enemy within.
Though the last set of carers were useless you do need some help to care for Liz or you willl burn out (maybe that is what CHC admin want so they can put Liz into any space they can find, not your choice.) I went through the burn out phase and if I had not had carers around I do not know what I would have done (the river beckoned for me (not M)). Do not get that bad it is not nice and a long climb back which I am still on.
You are right to complain to the CQC about the care company which sounded incompetent and uncaring.
I so hear what you say about, "Do not get that bad it is not nice and a long climb back." I am shocked when I reflect on my levels of general coping, confidence and ability now compared to two years ago. I feel rather shattered as a person with the constant high adrenaline and having the bars of my cage rattled for weeks on end sometimes.
We have had 36 good hours and I feel so much better... I know it is not enough, but sometimes I think I am irreparably broken.
Your advice is good - thanks.
We are not going to get respite - they have no beds. Tomorrow I will see if they have put our Personal Budget through and if not I will draft a formal complaint to the new manager to arrive Friday.
What I want is the cash so I can book Liz into a top rate Nursing Home around the corner and supplement the CHC money with our own to pay the higher price. (But they are full at the moment too!). I could also look further afield.
Instead of another agency I plan to get a P.A. in. I am going to do a post on that in a moment.
Thanks Kevin never heard of PA's will investigate but I do not think personal budgets available in Wales (yet) so will have to observe from a distance.
Hope you get a few more days to recouperate and Liz gets some restful sleep. Best wishes Tim
Maybe not even that? I was told last week as my husband is not connected to the Hospice anymore because he's in the Care Home that it would be unlikely he would be offered a bed. They only have 12 beds!
He is not connected because they told him his Day Care had come to an end. He was heartbroken as it was his only break. They offered him a different day but he refused it as it would have meant we would have lost the sitter we had and therefore apart from him going to Day Care I would have had no break. So in thinking of me he has now been cast adrift!
Nobofy actually cares about him and it's hard to believe. Makes you wonder what this country is coming to?
Kevin I wish I could write something that could wipe away all your going through but no words can help.... mum can be nasty with me but it's nothing compared to how she is with dad and he's the one that cares for her 24/7 it's true they take it out in the ones closest to them. You definitely need a break and look after yourself I hope they sort respite out soon. You are doing an amazing job.
When first I tried to tell the nurses etc how bad Liz can get they look quizzically at the sweet smiling person seated there and then back at me with some doubt about my sanity. My GP definitely thinks I've lost it - chuckles. She keeps asking me what meds I would like (she knows I was in psychiatry and know them all well). I don't want any sedation to make the caring even harder
Does Liz have a neuro enablement team involvement if so maybe they could offer some education to the GP , mums neuro enablement team have been amazing they arranged a mdt meeting with GP and district nurses to talk to them about psp (as we all know not many healthcare professionals have ever come across it) she gave them all a copy of the psp pathway and talked to them about what to expect. This is not you Kevin yes you may be a little stressed but it would be more abnormal if you weren't. Just another thought that may help, the hospice put mum on amitriptyline which helped massively with mums moods, she still has outbursts but not as often xx
And so is the neuro enablement team. We were referred two months back - I forgot to chase that.
The GP is leaving - she was actually rather good - we will miss her - She was just at a loss partly because of my background - Counselling isn't that helpful when you have been in training therapy for more years than I care to think of and I have shrinky friends who come and see me. We drink tea and talk about it all and they ask the right questions and give support.
I feel so bad for you and wish things could be different for all of us. Thank you for this post in particular as I giggled reading what seems to be the exact same thing that happens to me. My "sweet innocent mother" in the eyes of others involved but boy how things can change when the door closes behind them. Sometimes comfort comes from realizing your not the only one facing these horrid issues.
Oh Kevin, I take my hat off to you. The police arriving, I think that would have been my final straw, S would be rushed off to the nursing home very fast, with me going in the opposite direction to the looney bin.
Have you managed to get Liz into respite? I do hope so, for both your sakes. You MUST get more care, or a lot more regular respite, you sound so desperate and that will only end in one way as Tim has said. My evening care are not good. Sometimes, don't bother turning up. Rush in and out in ten minutes, although they are paid for 30. I spend loads of time complaining, but CHC can't get anybody else, so I am having to put up with it, at the moment. The theory, any help is better than none. I can't physically put S into bed, at least that can be achieved.
It's actually the second time Liz has triggered a Police visit. I used to do a lot of work with the Police and so can get them through their process fairly quickly.
The first time Liz told them that I wanted to kill myself! I ended up taking a lovely young Police woman through the basics of assessing suicide risk. She was most grateful and, as they always do, she advised me to get more support!
It's the humiliation of them coming that get's to me.
It sounds like you really need the carers... physically I can do the work so I can manage without the stress they bring. As you might see above I am trying to get a PA for Liz. An independant carer. I will do a post about that later.
Thanks for being there. I think we are all in the same boat eh?
Regarding police, one time long ago, my 99 year old grandfather, a very dignified and self-contained man, who generally could walk only with a walker, was living with my parents. In the dead of night they discovered him gone - how?!?! - and ran out to find him stark naked running (!) down the street of their quiet neighborhood. When they caught up with him and tried to turn him around, he started screaming that he was being kidnapped, imprisoned, help, help!! Of course the neighbors, probably many of them, called the police. You can imagine the chaos of that. The next day my grandfather didn't remember a thing, but it wasn't a night my parents or the neighbors forgot!
Had just started replying and what I did I don't know but it vanished! Doing a Heady as she does that too! Just wanted to say your post made me feel very humble. Your Liz is a lucky lady. I think she knows it too as she rang her sister to come to your aid? You probably needed some distraction even if it did mean you didn't get things done. However the Police? I would have been mortified! Thankfully you knew how to handle the situation. What a nightmare you have been through and bloody carers doing their best to tip you over the edge? A lot of them are not been trained properly! I had the same problem and had to get rid oif the ones we had but the council filled in the gap...however they didn't manage to replace them. Then he ended up in hospital and then a Care Home where he still is (shortened version)! It is not over yet either and I am worn out! You would think I might be more relaxed but I am worried about him and the way he is looked after.
When I joined this site I was angry after reading so many desperate posts and I remember asking why don't we write a book? Well we have! All that needs to be done is to copy and paste the posts on here and it tells doctors about the sheer desperation carers and patients face and the lack of understanding or care about all of us? It is a testament to the love we have for our poor beloveds and the sheer bravery of all of us!
Take care Kevin. By the way you are right there are no care beds where I live either! I have been told that by someone looking for respite for her terminally ill husband. That is exactly what she was told. The health service and social service are broken! Then we are told there are no cuts? So why are they proposing to close more hospitals and A&E's? If there are no beds now can you imagine what it will be like if they do that? My husband had better stay where he is I think although getting to him is such a problem as I don't drive!
Oh Kevin, can you not make a documentary about this! Calling the POLICE! Have you thought prison might be a better option!
Well I keep thinking I'm soon gonna be up the creek without a paddle, so see you in the river!
On a serious note we all know I've been 'floundering' at lot, didn't think I could carry on much longer without respite, somehow, this time I seem to have come out the other side, don't know how, till the next time. Hope you can get some respite sorted, you NEED it, I think I'll be sectioned before F is deemed to no longer have mental capacity!
Kevin, you are a wonder. I'm so sorry you are going through all this, but very glad you are back and able to post! I told my guy about the police showing up at your door, and it made him laugh, but he got a mischievous look in his eye, and I would have been afraid I'd given him ideas, except that he can't dial the phone without me! And he has always had reply that could either be yes or no - I attribute it to his Mainer culture and accent - it sounds something like "myoump." Very frustrating trying to get a straight answer to a question, especially now that his speech is so close to gone.
I've never heard you complain, Kevin! You are always helping the community with great advice and information - really invaluable! - even while you are coping with what we are all facing, the slow loss of a loved one. Do you remember Sammy telling us of the dream he had after his father died, in which all the carers on this site are embracing in the great beyond, saying "well done!"? I look forward to meeting you then, if not before. You are one of my heroes. Love, Ec
Meeting all the amazing people on this site is a true silver lining to the black cloud of psp. Thanks, Kevin, for your friendly words. Love back to you, Ec
Crumbs......this was a mirror of my week !!! The laughing is sending me stir crazy. After your help Kevin the ball has moved forward and we have a CHC assessment Friday 25th.,we passed the social workers initial assessment as high , but well aware it will be a battle. Social worker called yesterday with a package of care lined up , we have to pay most of it . I said I can't afford it, the means test does not take into account I have a loan on a car , or that I recently moved house cause of the illness and it needs lots of maintenance work done it and decor etc . I will not have the means to get a thing done. I therefore had to refuse package and I have approached a day care and will use the attendance allowance on that. I m not too hopeful on the CHC , my husband does not have any district nurse visit nor a catheter. The only two things he can do is blow his own nose and just a bout spoon feed himself.
Kevin you have had a bad time, glad you have got some order back into life, and Liz is being nice. This horrible PSP is a killer, George has been really agitated this afternoon, sweating, not sure if it is another urine infection, I am praying it is not, really finding it hard to cope at the moment. Sending you a big hug lovely man xxxx
Just looking back through some posts and saw Liz's statement, "Some things have faded, but not my deep love for Kevin, although sometimes I can't show it."
Dear Kevin, what a torrid time for you and so difficult to deal with the rollercoaster of emotions that Liz is displaying. I think you should be awarded a medal or two for the way you are dealing with all you are having to put up with, I take my hat off to you. The way you describe how you feel she is drifting down the river certainly resonates with me, its as if I am reaching out my hand to stop the drifting but can't quite get hold of his hand to pull him back.
Here's hoping you get the respite sorted asap, you certainly sound as if you need time out to recharge your batteries.
Sending you a virtual supporting arm around your shoulders.
Oh Kevin I am so sorry to hear of all you have been through. To think I was beside myself dealing with my caregivers not showing up today. I was so looking forward to going shopping and out for lunch with a friend. My husband does not talk to me except when he wants something. I guess this may be a blessing in disguise . You have had so much turmoil this past while. You are amazing to stay calm sane and caring through it all. Prayers and hugs for both of you.
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- Just got to keep adjusting my head to new realities - take each new event in my stride - just keep finding holes in the ice where I can come up for air.
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