PSP Association

George

Well another sleepless night with George coughing and making strange noises, laying here wondering why with the careers, he does not do this, but with me he goes on and on, I feel like he is trying to punish me? Am I being silly, but have this strong feeling that I am right. Fed up off clock watching, my throat hurts me, my back hurts me, feel like I just want to curl up and loose myself in all the bloody PSP. Feel like I am being punished for him having psp. Used the nibuliser, going to ring doctors and asked if there is something to dry up the secretions on his chest, I am so tired, even if I could sleep I will not be able to. Moan over. Yvonne xxxxx

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Oh, Yvonne, sending you hugs. It sounds perfectly awful. Wish we could send over a carer and a glass of wine.

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Thank you, laying her listening to George and the rain. Yvonne xxxxx

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Hang in there!

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Oh Yvonne, of course George is not blaming you. Probably crying out for you to do something to help him. I doubt he knows what, just something, anything, to make it all go away. Can you squeeze into his bed and cuddle him? Or hold his hand. I know exactly how you feel, remember feeling this way with Steve and know it was hard to give him any physical comfort, but do try, it might make you both feel better.

Sending big hug and much love.

Lots of love

Anne

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Thank you Anne will try a squeeze in with him for a while tonight, I know that he loves me, and cares about me, just think I am being silly and because I feel tired everything is that much worse xxxx

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Yvonne, the last thing you are is silly. These feelings build up, especially when you are tired. When the carers next arrive, go to bed for however long they are there and forget the world for five minutes.

Lots of love

Anne

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Have spent some time with our grandsons today makes me feel better xxxx

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I think you may be right Yvonne and I think I know how you feel. Colin did the same. When he hadn’t spoken for months, I asked him why he didn’t sleep right through the night and why make noises like a rutting deer with me but not with the carers and why need the loo umpteen times with me but not with them. He suddenly spoke clearly, “I want to see you but I don’t want to see them”. It made me feel bad and I realised he felt so comfortable with me, even if I was grumpy, but didn’t with the carers. He didn’t have carers during the day so on the days he didn’t have a night nurse I dozed whenever he did. He also slept better if we had been out as he rarely fell asleep in his wheelchair......except once at a National Trust place, I was so tired so reclined his wheel chair and I lay on the grass and we both fell asleep to be woken up an hour later surrounded by a class of 5 year olds doing a bug hunt. He thought it very funny...so did I.

I never felt as if I was being punished. I felt I was being challenged and as I don’t like losing, which I always did/do playing games or in races, it made me more determined to finish the job I’d been given.

Sending you a great big hug Yvonne and praying you and all the other carers are given the strength to carry on.

Lots of love

❤️ XxxX

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Thank you Bev will try and chat to him about it. I want to keep him home, just finding things a bit stressful, but one day at a time. Thank you for making me smile xxxxxx

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❤️ XxxX

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Poor Yvonne. I remember struggling with similar feelings, although I didn't have such a bad time as you do. Chris only allowed his anger and resentment [ fear ? ] to show to me. He also liked to have me near him and it felt very demanding at times. I just needed to get away.

I loved being a mother but remember feeling resentful as if I was being taken over by the children's needs. Its all the same feeling of losing yourself. I guess thats how Chris felt too - but he couldn't get away.

You are exhausted physically and emotionally.

Big hug and lots of love from Jean xxx

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Oh Jean how true is that , totally exhausted xxxx

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I think we are "safe " to get angry and difficult with. Its because he knows he is loved !!!

xxxx

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Jean I think you are right xxxx

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Hi Yvonne

Ugh! That sounds like a miserable night and then some!

You ask the million dollar question re. punishment and PSP.

Liz was sweetness and light with the carers and sometimes damned difficult with me. The carers would leave and then it would start. It felt like being worked over. From time to time I would sit down and go through what had just happened. What she did, what I did, her response etc. and then ask her how on Earth could her behaviour be anything but aggressive. She would respond, quite perplexed, with, "but I don't feel angry." One day she did say, "Yes, I was aggressive." I concluded that maybe she did not know what she was doing sometimes. Maybe this was some lack of insight consequent of PSP.

I have read quite a few posts here where folk say that they, as the closest person, get quite a bit of seeming hostility, but that no one else does. Sometimes I think that it might be because we are a safe outlet for anger at the illness.

Eventually care at home broke down because it reached a pitch where it was impossible for me to continue caring. If I left the room she would call me back every 5-10 minutes with a another demand and if I tried not to respond she would do something foolish like falling off the settee. So often I got behaviour which sabotaged the care I was trying to give. The carer or visiting family member would leave and almost as the door shut it would start.

I mentioned it to the GP a number of times and she looked at this sweet person in the wheelchair and then back at me as if there was something wrong with me!

Now here is the weird thing. We started Cannabinol some ten days ago and her old sweet self has re-emerged.

I don't think I will ever untangle this one.

My heart goes out to you. It was so hard getting this behaviour from the one I love so deeply.

Hugs

Kevin

xx

PS - I have focussed on the bad stuff... Interspersed wit it Liz would be so warm and loving.

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Oh Kevin it’s so hard, will try the oil, george is exactly the same when the kids are here he is lovely as soon as they go, he starts, bloody illness, trying to make an appointment with Professor Morris, think we need to xxxxx

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It is hard. For some years it felt like I was the only one fighting to keep us together in a loving space.

I would be keen to know what Prof. Morris says. With us he would nod as if to say that this was what he would expect.

This is what we are using:

ciitech.shop/collections/pr...

It has made a huge difference and she says she feels more comfortable in herself with it.

Warmly

Kevin

xx

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Kevin tapped on the web site you put but doesn’t open? No good on the Internet xx

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More than likely be the same with us Kevin xxxx

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Try googling

PROVACAN CBD OIL 500mg Daily

It will take you to it.

The spray gives a 'shot' of 6mg which ties in with what I have read as being an ideal dose.

Two doses a day 12 hours apart.

xx

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All ordered xxxx

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Great

Do let us know how you get on.

xx

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Hi Kevin,

Have I found the correct one ? Ciitech @£34.99 ? Is there any problem with you giving it to Liz while she`s in the nursing home ?

xx

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Hi

Going by the price - you have the correct one.

It should say PROVACAN CBD OIL 500mg 'Daily'

Good luck!

:)

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Mine is on its way Kevin xxxxx

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Adding: Liz does have some frontal lobe deterioration and that can give rise to hostility and 'bad behaviour'. She has, "an element of CBD" (Neurologist's comment.)

I believe this presentation is more common in CBD.

Hugs and warmth didn't diminish it for us.

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Kevin just got an email from Prof Morris’s secretary, she had sent my email to Dr Lamb, have you ever seen her? She is amazing as well. Yvonne xxxx

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No, we saw a Dr Leverse latterly.

I think even to get to practice in that Clinic they have to be pretty amazing. :)

I do wish you the best of this. The behaviour thing can be such a heartbreak n top of all else.

However given the way Liz is now I think a lot of it was illness for her.

Best of luck

xxx

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Thank you Kevin x

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Yvonne I feel so desperately sorry for you but it seems the closer you are to someone the more you get hurt. My hubby was so well behaved with carers, doctors, nurses etc. But at times completely different to me. I kept a daily diary of what happened each day i.e his behaviour, what food he ate (if any) how much fluid was taken, bowel issues, coughing, choking, etc etc. In fact I had filled four diaries which seems ridiculous but I just didn’t know how else to cope and writing everything down did seem to help me. I am thinking of you and send you a bear hug love Jxx

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Thank you xxxx

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There is no getting rested is there. I haven’t felt well slept in a year or more now. We do a daily nap after lunch now. I have a very hard time sleeping in the day. Whenever I am able to start to drift off Larry ESP kicks in and he wakes me up. Yesterday he managed to do it three time when I gave up and got up. I know this will pass and I will have a better day or days. You aren’t the only one who feels the way you do. Lots of us do.

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Yes I know everyone is feeling or felt like this just hard sometimes xxx

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I know it is hard. There are days I could scream. They seem to be getting closer together.

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So true xxx

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My heart hurts for you, Yvonne. I pray today is a better one for both of you. Big hugs..

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Thank you xxxx

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I hear you and I feel your pain.Between coughing and he was wrestling the bed rails saying was trying to get out the front door, not much sleep.Cat naps,I've never been able to them.

Sorry to much help.

Dee

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Can’t sleep either during the day xxxx horrible horrible illness, sending you a big hug Dee xxxxx

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Aww darling I’m so sorry to read this, can you get some urgent respite care for George?

Pure tiredness and exhaustion is a killer literally!!

Huge huge hugs Yvonne!

My heart goes out to you!! X 💕

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Can feel the hugs I am ok spent so time with grandsons xxxx

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Good Yvonne you need some time out! X

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❤️❤️❤️❤️❤️❤️

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I agree with Heady completely. It is you not the care givers that he wants to hold him. My heart breaks for you. It is not your fault, never say that. Big hugs and kisses and love for you only.

Audrey

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Thank you Audrey I know it was just a hard time for me. How are you beautiful lady? Xxxxx

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Dear Yvonne,

My husband is very similar to your George,

- mindfulness regularly

- yoga or Pilate

- hugging, cuddeling,

- I call him night runner, sometimes I brace him tight and say to him I am cold I need him to be my blanket

- singing or praying together sometimes I end up to be only me but it help me

- making him tired , they are still alive stuck in that PSP cage they don't know what's happening to them , we don't know it's very frightening time!

- I bought a little trumbolin sometime I help him to stand up there and he spend about 5 min up there I think he is imagining he is jumping high ( when he says he is board)

- I know he loves me ( we can feel it ) look in his eyes

- making jokes is another way to help me cope

-my back and my hands ( golfers elbow) are hurting I start to do excersise every morning and I will ask him to do the counting ( he feels he is doing excersise too)

- playing card or any game to make your rainy day goes faster ( I know it's just you playing but my husband thinks he is playing too! )

- I am giving him before I go to bed his medication then I normally can have couple of hours sleep ( I do understand for each person is different)

- remember we are in the same movie ( how we can play our role it's our choice )

- i started to go to counselling which I believe it's helping me ( not feeling guilty, blaming myself)

- sometimes I remind myself I am doing my best tap my back

- sometimes treat both of us enjoying any part of our life together

- I have lots of flowers and plants I enjoy looking at them touching their leaves, smelling and asking him to do the same

- using HEAD SPACE meditation , or any other meditation help me to just relax and recharge my energy

- sometimes I remind myself how strong I was to look after my children sleeplessly

- they like wondering during the nights, it's the only thing they can do when I feel it's safe I let him to be

- my husband can feel my anger, anxciety, hopeless, everything exactly like a little baby ( when I am happy and strong I transfer this feeling to him automatically , it's like they feed from our feelings)

- shower, bath make them relax and help them with sleep transfer it to near bed time and use relaxing oils lavenders, camomile ( then you can hopefully have couple of hours sleep too )

- playing calming music from the time you are getting up helps both of you

- using herbal teas like camomile, St. John worth or any other calming teas

- I am not giving any liquid after 6 pm giving his last tablet in the night in spoon hide it in the middle of yugart

- I experienced 4 nights of receiving help for giving me break to sleep as we are living in the little one bed flat it was giving me some peace ( I didn't need to worry) but I couldn't sleep!

- my experience to put him in the care home just fir a night was not good

Sorry I can write for ever and my list is going on and on but whenever I am really fed up and tired I remember my children nursery song ( LOVE IS SOMETHING IF YOU GIVE IT AWAY , GIVE IT AWAY ...... YOU END UP HAVING MORE)

Sending all the love in the galaxies to envelope you and help you with your strength remind yourself ( YOU ARE AMAZING)

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Thanks Samila. Little hints which help!

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Oh thank you can feel the love 💕 xxxx

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Hi Yvonne. I am so sorry. It is so hard to cope with but he is not punishing you. I am sure that it is the old adage of being able to be what you really need to be with the one you love the most - not on your best behaviour for someone else.

I wrote this this morning to get rid of my frustration as I had been talking with some friends about how one feels when someone gives you news when you are not really awake.

‘Grunt, grunt, grunt’. Sign he is awake, which wakes me.

‘She’s not awake. Why is she not awake?’.

Me: ‘Morning darling. I am awake. It is 5.30. Do you want a cup of tea?’.

‘No’

Me: ‘OK’. Close my eyes again.

‘Grunt, grunt. She’s gone back to sleep’.

Me: ‘No I haven’t. What do you want?’.

‘A drink’.

Me: ‘You have some drinks left in your two beakers’.

‘Oh. Have I?’ Helps himself to a drink. I close my eyes again.

‘Grunt, grunt. I can’t believe it she’s gone to sleep again’.

Me: ‘What do you want?’.

‘To get up. Why are you not getting up?’.

Me: ‘It’s only 5.45. The alarm does not go off yet’.

‘It is still time for me to get up’.

Me: ‘OK. I give up’.

6.30: We are both downstairs. I am dressed. He has had all his medication.

I sit down with my cup of tea.

He is asleep in the chair and at least it is not 3.30.

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Oh so agree with you, george does the same but I have to give him his water, then he chokes on it, then when I get back into bed he wants more water, off I go into the kitchen to get more water, then he starts making grunting noises, I keep saying breath George, it’s early go to sleep for a bit longer, but oh no I am wide awake, oh the joys of psp. Big hugs. Yvonne xxxxx

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Hi Yvonne!!

I attend a course for caregivers of different neurological diseases.

The monitor tells us that the aggressiveness of the patient with the main caregivers is "a classic". The patient is often "charming" with the visits, especially with family members. Complaints, crying and demands appear mainly with the main caregiver. It is often the case that the patient tries to break the routine that you are creating, perhaps to exercise some authority that they feel (logically) very diminished. You have to be flexible but try to recover the systematics when you can. I have the feeling that "my PSP patient pulses me" whenever sees me.

You never know where the character of the person begins and the effects of the PSP end or vice versa.

Sometimes the patient forces the situation so much that it is better to go out for a walk until the irritation is over.

Luck and patience.

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Luis this is so true, would love to go on a course like that. Yvonne xxxx

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Yvonne

I think it's appropriate to play the phrase of Anne-Heady (active participant in PSP-HealthUnlocked):

"Never forget to get plenty of rest, ask for help and most of all, ditch the guilt!"

Hugs.

Luis

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Ditching the Guilt I find is the hardest thing to combat.

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Me too so very hard. Xxxx

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Luis I know but it’s so hard xxxx

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I really feel for you Yvonne, this evil disease keeps throwing more and more cruel things at you, just when you feel most exhausted.

Stay strong, hugs to you.

xx

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Trying to stay strong really I am, just gets to you know and again. Hugs back xxxx

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Hi there, I thought exactly the same thoughts when I had Leon home with me, now he is in care, when I go in 5-7 hours a day, he wants me to clean his nose, ears, mouth, wipe drool, take him to the loo, put him to bed for minutes at a time, I asked today if he does it with the carers, hmmmmm, guess not, he copes when I am not there, ughhhhh, such is the life of P.S.P. frustrating for patient and carer alike

Hugs xxxx

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Every time I talk to George he wants to go to the toilet, I say george you have just been, our he wants a drink, a tissue, want to tell me something, most of the time I can’t understand him. Yvonne xxxxx

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Totally on the same page, yesterday I took Leon to the loo, did nothing, sat for 10 mins, so I get him back to his chair, (another 5 mins) then he says "I just peed"(via alphabet board) Ughhhh,

Hugs to all on this site, it keeps me sane

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Hugs back to you, George has a catheter xxxxx

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Yvonne,

I feel the exact same way with my mom. My husband says I’m being crazy, but sometimes I just feel it - like when she shakes her fist at me or drops her food on the floor while looking at me & laughing. I wish I could say all these posts about the primary carer getting the most authentic expressions of understandable frustration made me feel better, but in the moment it feels like a lack of gratitude.

Of course, illness happens within existing relationships and my mom was always stubborn and particularly unwilling to accept help. While I completely sympathize with her terrible plight, it’s hard not to take things personally even when intellectually I know she’s impaired and exceedingly unhappy about her daily life now. On the worst days, I focus on what I’m giving her - time with my 6 & 9yo kids, good food, in-home massages and a great care team - and tell myself I’ll deal with my own emotions about it all after it’s over. But, for now, I’m human and I get frustrated and worn down too! We’re all just doing the best we can, but I’m under no illusion that I need to be perfect - especially when dealing with such an imperfect and unideal situation. But that doesn’t mean I don’t beat myself up too. Sometimes I wonder if the dynamic “works” because it means we’re still in a relationship as opposed to her just being someone I’m giving to (it that makes any sense)...

Hang in there, Yvonne; clearly you hit on a topic that is resonates with most of us. Thanks.

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Agree with you all so much, feel better that so many off you feel the same, for the careers he can push himself back on the chair but oh no not for me, so frustrating isn’t it. Hugs to you. Yvonne xxxxx

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Our monitors tell us that the role of the neurological caregiver is very frustrating:

1) You work and fight for a battle that is lost.

2) The patient's discomfort affects you and makes you have a lot of bad times.

3) Generally the caregiver's work is not recognized, neither paid nor expressly appreciated by anyone in your environment. Only other caregivers in similar cases can understand you.

It's like seeing the coast, swimming and swimming and never reaching the shore.

If it were not for forums like this, the caregiver would feel very lonely and without moral or practical support.

Hugs and courage.

Luis

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Luis true, my brother said the other day you are amazing I don’t know how you do it? Just have to get on with it, another day of psp xxxxx

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Totally agree with all, outsiders, staff at Leons new home, friends, all say they don't know how I did it for so long, you get what you are given an deal with the best way you can.

Hugs to all

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Yes you just get on with it, hopefully things will be quieter next week when grandchildren go back to school xxxxx

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Dear Yvonne

Completely in tune with your worries- so have found the response to your post incredibly helpful and reassuring.

I had a week away last week, leaving my hubby at home with a live in carer for the first time. He was incredibly cross with me for going, when I rang home he would refuse to listen or speak on phone and in between I had horrible phone calls from him - bizarrely his speech which is usually intelligible was remarkably clear!!!

Home for 5 days now and have cooked favourite meals, taken him out every day etc and he is still up every hour at night - to check up on me he says!!! I know he cannot help being so vile but he is!!! Driving home from my respite I knew it would be tough on my return but it really makes you wonder if the break away is worth it🤔. Maybe he will be better next time ( if there is one)

I truly feel for you Yvonne PSP takes from us all a huge chunk of the people we love.

Sending love hugs and understanding

Tippy

Xxxx

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George doesn’t like it when I go away, he can’t use a phone so I get no phone calls, if he could I am sure he would be the same. Going for restbite it’s so true once you come back refreshed, it takes a few days and you have forgotten it. Tippy big hug back to you. Yvonne. Please go on restbite again you need to. Yvonne xxxx

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Strangely enough my husband cannot use a phone ordinarily but anger gave him extra strength I think!! Your right though we need our respite to stay (vaguely) sane!!!

You take care now

Love Tippy

Xxxx

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Hi Tippy!

I try to have time and small vacations away from PSP. I believe that it is fundamental for the physical and psychological health of the caregiver.

Whenever I take "free time" the reaction on the part of the patient is rejection, creates discomfort and complains about anything. I think it's about creating "bad conscience" and that you give up your vacation.

It is very hard, but you have to resist, take your vacation and "cut with the PSP". I usually take vacation days with a friend who helps me " to forget" and only in the afternoons I call the caregiver or one of my children to know how the day has gone. All this avoiding the feeling of guilt.

It is difficult but necessary for caregiver to avoid falling ill.

What would happen if the main caregiver fails ...... It is certain that another solution would be sought, better or worse !!

The caregiver should think that he is his best friend and has to take care of himself.

Hugs

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Hopefully see you in June for Amanda’s birthday? Xxxx

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Hello sweet lovely lady, sorry about late reply but I have to pick right times to be able to reply to posts. So sorry you are having a tough time dealing with the horrors of PSP especially when you aren't feeling that great yourself. I felt really rough yesterday, went back to bed when the the carer came for my 3 hrs respite and then I had to take over. Soup with bread blitzed for Ben's lunch and his usual ready purchased deserts, me in his bed, him in his recliner chair alll afternoon unless I got called to get him onto commode , or calls for other various things he needed (switch TV over but voice so quiet I have to get out off bed. Etc etc ) It was a real effort to move with pains in my stomach, nausea, major headache and so tired and feeling very sorry for myself. Luckily feeling a lot better today but not perfect. It's hard isn't Yvonne and I think NannaB is right that they much prefer you to care for them and they don't have other ways to tell you. Stay strong and hopefully the forcasted sunshine should arrive and help with your low mood. Bring it on.

Sending you a massive hug

Love Kate xxx

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Katie sorry to hear you are not feeling great, hopefully you will be feeling refreshed tomorrow, our should I say today? Just got into bed myself, like to tidy up and wash the kitchen floor before I go to bed. Made myself a hot drink laying in bed praying George has a good night. I sure it is the lack of sleep that makes you feel unwell? There is a sickness bug going around, hopefully you haven’t got that. Sending you a big hug, hopefully the sun will shine and make us feel good. Apparently next week the weather is going to be lovely, fingers crossed beautiful lady. Yvonne xxxxxx

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Hi Yvonne;

I had to chuckle a bit (even though I know you're at your wits' end!) - because my hubby does what I call "snore talking" during sleep. He has lost 95% of his speech and getting even a couple words out in a row is a huge effort...yet at night he suddenly has all this speech in his throat! It's definitely more than snoring - go figure!

I sympathize with you about the loss of sleep. I become a zombie, I get sick, I certainly get depressed when I lose significant amount of sleep. I have to leave him for a night to his own well-padded and Depends-wearing devices while I sleep in the upstairs room. He has a wireless doorbell he can use (he has the use of one hand quite well) I'm also signing up for a LifeLine medic-alert-button thing. With all that, I figure I can sleep alone a night or two each week to try to recover....

Good luck and hugs your way :-) XXX

Anne G.

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We had the alarm, but for us it was a waste of time, hopefully it’s good for you xxxxx

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Oh Yvonne. My mum used to feel.this way too. She felt like my dad was deliberately awkward or un-cooperative but very obliging and compliant with carers.

This was sometimes the case but we tried to look at it as she was the only one he could truly be himself with. If he didn't feel like being compliant and he was fed up or angry she was the one person he could show that to.

It was very tiring and such hard work for my mum emotionally and physically but now we are at end stage she is glad she did all she could for him.

Much love for you at this difficult time x

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Thank you for your reply I think you are so right. Sending you big hugs . Yvonne xxxxx

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Dear Yvonne,

It's in the air, literally. Charles had same night as George. It's the pollen here and when he starts coughing it doesn't stop. Doc said not to dry up secretions, that's the problem, keeping them moist is key. So we use cough syrup and the saline and it finally calmed down but what a day. I cried most of the evening and the day. It hurts both inside and out.

Love,

Cuttercat

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Cuttercat got George some very strong cough medicine, then nibuliser he is sleeping he has been coughing since Thursday last week ages xxxxx

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