Tried to talk to George about care, when he wont be able to decide what he wants to do, so we could put it into place when needed, but he did not want to talk. I asked him do you think you are going to get better, with the PSP, he said yes, with your help. What do you say to that, feeling sad, he looks half the person he was.
He is so quiet my heart feels like it is broken in half, such a difficult thing to have to think about, any advice.
Yvonne xxxxxx
I'm so sorry, Yvonne, and know exactly how you are feeling. Heaven help us all.
Oh Yvonne I feel for you. Could your GP call and have a chat with him and bring the conversation round to planing future care. xx
Hallo, Yvonne,
I do think that you are doing the right thing - for your husband - in trying to talk about this. How very difficult and sad for you. And how immensely difficult for George.
Does your husband have a close friend that might talk to him, perhaps together with you, about the way PSP progresses and what may lay ahead? Maybe it would help to have someone outside the family and daily care routine to help him to consider the future? You can explain that the whole purpose of the discussion is to make sure his own wishes are followed concerning his treatment and care.
Thinking of you, Yvonne. It is a heart-breaking for you to have to lead this conversation as well as everything you do.
A.
Sorry Yvonne, but I can't remember, are you in contact with your local hospice? If so, get them involved. They are use to having conservations like this, they may be able to talk to George. But at the end of the day, if he doesn't want to have this conversation, then nothing anyone says will make a difference. I know, S is exactly the same. Now, with his speech all but gone, I guess, he will have to rely on me to do the right thing! Yet another responsibility!!!!
Lots of love
Heady
Oh how i count my blessings We have always talked about everything and through this trying time is no different. We have discussed what intervention he wants and doesn't want. Funeral including the reading and hymns where he wants his ashes. He has even said he wants to wear the suit and shirt that he wore when we got married this year.
Try using things like tv program or adverts when they bring up things like making wills or letting people know what they want that could be an opertunaty to bring up the subject. Some people are scared that as soon as they discuss what they want then that is the end of thier life as they know it.
Because i have always worked with the elderly i am not squeamish about death or end of life and i have made my family the same. My kids always ask me if i have got my cd of always look on the bright side of life safe. Because the know that is what i want played on the way out of the service.
As my old mum would say slowly slowly catchy monkey.
Janexx
Jane you are lucky to have all this in place. Yvonne xxx
As Heady said, the hospice are brilliant at this sort of thing. Colin would never discuss the future with me but the hospice gave us a booklet to fill in with his wishes and he did give the answers to the questions. I'm like Jane when it comes to talking about death. I've shown the boys where my ashes are to be scattered and C said he wants his there as well. It's in a local park so I've told them if there are lots of people around they will have to put them down their trouser legs and shake them out like the war films showed the prisoners of war getting rid of their tunnelling spoil. They said they would put them in a doggy pooper scooper bag and cut the corner off but one of them said it would look like a gunpowder trail.
One of the things you need to know is if George wants a PEG fitted or not in the future. C wants one but only when necessary, which may be too late but I ask him now if he chokes and his thumb always goes down.
I hope you find a way of getting George to let you know his wishes. It's hard for us to make all the decisions about their future.
X
NannaB I did ask him about the peg, he said he would want one, when the time comes, got that much out of him, I really think, that he thinks, I told the doctor that he has PSP. I have said to him it is not my fault you are sick, I have not got the powers over the doctors, it is really hard, because he does not accept that he is sick.
Told him about the thumb up and down, he would not even look at me, when I was trying to talk to him.
On Friday we had a family dinner, and when George was not there, our middle daughter, and her husband were talking about George, donating his brain, it was quite a strong conversation, and our son was getting upset, saying it should be dads choice, I know from previous blogs that you and Colin, are going too. I did ask George before, and he said he did not want to. Feeling quite bad, our son in law, said it could affect my boys, our older daughter said she would not want to now, it is a hard one, because George's cousin had PSP, and George's mum died at 53, with the same sort of symptoms, what do you do? So hard. Well can't sleep so watch TV. Sweet dreams everyone. Yvonne xxxxx seems like things are getting more complex every day, like we have not got enough already.
Will ask the hospice about booklets. Yvonne xxxx.
Oh Yvonne, I'm glad I am not the only evil bitch in the world. I, too, told the doctors that S had had a stroke, that I thought he had had a second, but that turned out to be PSP! He was perfectly fine, before I marched him to the doctors. I have made everything up and am neurotic. The really sad thing is, the "sweet" doctors even believed him for a while!!!
S is going through what George is, about communicating as well. Won't/can't talk to me. Won't look at me, I am trying to get the thumbs signs going, but he is refusing to take part. Just keeps insisting on using telepathy, which unfortunately I can't do! My morning off today, hadn't spoken a word since I have been home!
Lots of love
Heady
Heady sounds so like George he has also not spoken to me, only to keep calling me. Did not go to centre today, he was up from 4.45, I did not go to bed until late, and he was so tired, and I could not move, so did not take him. I had a sleep on the sofa with the dog. Yvonne xxxxx
Don says the same thing Yvonne, he is going to get better also with my help. I can't help myself, I am so tired and stressed. Forgot to give him his meds on time again today s have to stay up until 12:00 I think. Don is very sad looking as well and getting more confused. I feel like my heart is breaking. Your so not alone Yvonne xoxox
Iknow, me too. I have talked to B about as much as I can. I don't want to make him depressed or more depressed...I don't know if I have ever asked himthat PSP will be most likely cause of his demise....not specifically at least. We have talked about death and what I want to do with my old body....recycle/ reuse what you can; throw the ashes down the river.....don't waist land on a grave....Then I ask what he wants etc. I think the only time I got all about him is if he would be willing to donate his brain so that he might help find a cure to PSP. I just make sure that we are having some sort of pleasant experience to "fit in" the unpleasant reality....These last few days have been emotionally draining as I see him slide further down the slippery slope.....I try to remember what he was like this time last year. It was the beginning of apathy; and lack of initiative to want to go and do something except library and church......and nightly tv. However he still did things at kids or my request.....movies, restaurant every now and then....We even went to a lecture....and to his parents house....We will go one more time, this Spring....I fear that may be the last time. And yet his vitals are fine,,,,am I rushing death? or am I having some sort of predictive thoughts I had in 2011. He was diagnosed '13.
Anyway. Don't feel too obligated in telling him how or THAT he is going to die. How bad is denial at this stage. Will embracing the nasty truth really make his quality of life any better? do that which comforts him and makes him feel safe....he feels safe with you. With your help he will conquer everything.....that's how much he loves you ! You can get him through ALL THINGS! Let him keep feeling that. And then come here and cry when nasty reality keeps nipping at you...Continue to comfort ,Yvonne
AVB
"...that in me [ the Lord] you might have peace [and comfort]. In the world you shall have tribulation: but be of good cheer; I have overcome the world."
John16:33
We are lucky in always having conversations about death and talking about things. I think the consultant was a bit surprised how much I questioned him straight away. I am just someone who needs to know what we're dealing with.
We were helped to fill a booklet about C 's end of life wishes at the hospice. He doesn't want a peg.
I'm not sure he thinks much about it. He relies on me to do the best for him always. He trusts me to do so.
I think he really thinks he can beat it. If thats what he needs to think I'm ok with that.
Its a terrible place to be !
love, Jean x
There is an excellent article in this months PSP news about frontal lobe damage. It deals with denial, in the sense that the person doesn't realise what is happening. Well worth a read.
We saw the mental health team, and apart from anti anxiety medication there is nothing that they can do.
My husband was fully aware in the beginning and fortunately we did all of the planning then. Now he often denies that he falls, is functionally blind or even terminally ill. He gets annoyed that we stop him from doing things that he thinks perfectly reasonable, climbing in to the loft for example!
Another great resource is a booklet from PSPA about cognition in Psp, I photo copied it and gave it to the family, it helped them to understand.
Hope this helps x
I know the battle you are going through, except G refuses to know anything about PSP so I can't discuss her deterioration with her, she knows she is getting worse but that's all, the talk of death and end of life care is taboo, I think she is very scared but by not talking about it I can't do anything to help.
The GP and hospice told me in January that there would be a likely time that G word need a care home, they also said I was in desperate need for a respite care. G refused to talk about either.
Fortunately the GP and the hospice kept "drip feeding" that it was important that I have respite. It took 9 months before she had a trial weekend at the care home, then a couple of weeks later back again for a 13 night stay, which I was truly grateful for the break. Now we (GP, hospice and me) have the problem of getting G to accept that it needs to be a regular thing, the hospice suggested another break before Christmas but I don't think that's likely, so the drip feeding starts again.
I hope y are able to find a resolution, if you do please let me know how you did it.
Hey Gg , how are you doing?
Greetings, life keeps kicking me whilst I'm down. Recently been told that I have slipped yet another disc in my neck, will find out in August whether or not I'll have to have another operation, if I do then we're in trouble as I will be out of action for a while.
How are you?
Ohh yuck do you have to lift your wife? Spine like game of Jenga. it needs great care in which one to move next lest the whole structure be in danger. Muscle strengthening and learning how to move external wts are so important?
Is it too late to use physical therapy or chiropractic therapy?
I am sorry you have to through this .
AVB
Thank you all, really appreciate you all being there for me, have got the PSP new news read will check it out, such a bad night last night can't think straight, George normally goes to the centre on Monday, don't think we are in a fit state to go. Yvonne xxxx
Hi Yvonne,
As you know we are going through this at the moment. I try to speak to P about staying longer in a nursing home when he seems a bit more aware and sometimes he says he knows that I can`t cope. Apparently he told one of the nurses during his recent week`s respite that he liked it there and wished he could stay. However if I try to approach the subject he just stays quiet.
He has always been there when the doctors have talked about PSP being terminal and progressive etc , but he does not appear to take it in.
He has been very confused this weekend and gets very agitated when I don`t understand what he`s trying to say.
Just as you said, it is heartbreaking but really P needs 2 people to assist moves and of course most of the time it is only me.
I think we all have to face the fact that we will have to consider permanent care for our loved ones at some point in the future because of this dreadful PSP, but how to do it when the time comes, I wish I knew. I am absolutely dreading the day when he leaves home for good and I still don`t know how I am going to face that !
Babs
xx
Babs I understand how you feel, it is heartbreaking, just want to keep them home and safe within the family. We did promise George that we would look after him, at home, I did not realise how hard it is, to have someone calling you at all hours of the day and night, with lack of sleep, you get so tired, you don't want to move.
I think you ever the panel is for the CHC they should come and see us and see what we do! We could go on for longer, and look after our partners. Yvonne xxxxx sorry been a hard night, and not a lot of sleep and a really bad headache x
Read AmIlazy's recent posts about how to find appropriate facilities....good stuff....It's in the "WHY" post
AVB
Will do xxx
Just laying on the sofa after my hard night, feeling totally exhausted, I was looking through old post, and just thought not heard from Peter Jones for a while, are you ok Peter xxxxxx
Look under the Electric Blanket post. Peter is about and lively as ever!
Will check it out, thank you xxxxx
Babs I am just trying to get the energy to put George to bed and go to be myself, I feel totally exhausted, never felt so tired. Here's to a good nice for all of us. Yvonne xxxxxxxx
Cognitive thinking
Every exhale is a moan.
