Do most of you guys talk to your loved one about what the doctors are saying about PSP or MSA? Do you talk about the life expectancy of both, and the fact that they will not be able to even feed themselves.
Does your loved ones let it roll off, or do they take you serious?
Yes we do talk about the fact that he is life limited. And yes we have discussed what could come.
Also eating and needing help. I think that is why Brian is very stubborn about what he eats and feeding himself. Somedays he makes so much mess i wonder how much he managed to get inside of him.
We have even discussed what he wants funeral wise. He has picked a hymn and a reading so thats all sorted.
Janexx
Hi what is happening to J is textbook but he thinks its just him. When I explain to him that other sufferers are doing exactly the same as him he says No . He wont accept anything I say and I certainly cannot bring up the subject of death.
One of my neighbours who I chatted to most days (she used to stand outside having a ciggie) passed away last Saturday afternoon she wasnt much older than me. Well it has really knocked me for six it was just a shock that she went into hospital for tests and never came back out!
J carries on oblivious to anything even when I was crying over the death of my friend he just sat on the sofa and never said a word.
xx
I am so sorry. Many hugs to you. If life aint giving you enough knocks here have this blow! and he just sits on the dang sofa waiting to be served....
Not his fault, not his fault, not his fault, is my mantra........but just for a moment can I have you recognize my needs?
I am so sorry, Escada....you are not alone no matter how alone you feel.....
AVB
I do try and talk about it, because I feel that I need to know his wishes, but yes I feel like he's sort of in denial of how bad he's going to get, all he says he's he'll take a load of pills and down a bottle of brandy, obviously not sunk in he won't be able to manage to do that!!
Yes, I talked, he listened but rarely commented. He wouldn't talk about funerals so I talked as if it was mine, e.g. I want to be cremated when I die, him...so do I. I want a wicker coffin, him...I want wood. He would always change the subject if I talked of how the illness would progress so I stopped. A few weeks ago I was sorting a box of papers that our boys had cleared from his office when turning it back into a bedroom. I found a plastic file full of papers from the Internet about PSP. They had been downloaded in the weeks following diagnosis. He had underlined certain paragraphs. I was still working then and it made me quite sad to think he had spent so much time reading about what the future will be but didn't want to talk about it. He has always been like that though. He could talk the hind leg off a donkey about anything except his feelings.
X
I got one of those as well!!! Although he couldn't talk the legs of a gnat now!!!
Lots of love
Heady
That must have been so heartbreaking, NannaB. I too found some papers about PSP. He told the doc. that he didn't like the term, "terminal, " He had never said that to me. X
Wow the first few sentences were just like mine Bev, But I don't know if B ever delved into the issues of PSP. I kind of hope he did, but if he did, then like your husband, he never talked about it. B was always the wing man strong sturdy quiet but engaging ...... I always thought he should have been a psychologist, He was so able to listen and reiterate what one just said which is really a great problem solving technique(?) I don't know what you call it .....nor did Bruce...he just did it ...now, putting two words together is just plain hard....oh well....
Yes we have talked extensively about what it means and what is to come right from the time of diagnosis. But only recently has D started to accept that it will really happen to him. I think in the early days he just thought that the progression would be so slow that they would be bound to have come up with a cure before he got too bad!
Now he cannot feed himself, cannot walk at all and we use a hoist for transfers. He is now losing speech very rapidly and has been talking about his funeral etc. He is always very emotional all the time and cries easily about anything and everything even about stories on TV, memories etc. so it is sometimes hard to decide when he is really deeply upset. I think now he knows what will happen but is still finding it hard to come to terms with. My best hope is that eventually he will reach a peaceful acceptance - but perhaps that's too much to expect.
I hope you find a way of talking about the future together. I do think it helps to be completely honest about what will happen and about your own feelings.
Vicki x
Hi Vicki, it sounds as if D has taken a dive in the last few months. It's a shock when that happens isn't it? C still cries when he hears something sad and now it's the only emotion he shows although he did manage a flicker of a smile a couple of weeks ago. I hope your wet room is finished now. It will make a lot of difference.
Happy Easter.
X
Yes just steadily a bit worse every day I think. He is very aware that he is going downhill rather fast.
The wet room is finished bar a few little things they need to come back to do (there's always something isn't there!). Derek is really enjoying being able to shower more often and the carers think it's wonderful! It was miserable while it was being done but worth it. We've also had some doors widened and a laminate floor put down in the bedroom - not very cosy but much more practical.
Hope you have a lovely weekend.
xx
In the first few months, B would laugh silly like...I understood that to be the PSP same like crying. But doc told me to get him on an antidepressant to calm that part of the brain. we never did and behavior waned. Though if something upsets him he now he whines like he is embarrassed or like a child who doesn't want to go and do what he is told......it's not loud and its not long it just is .....
There is a very good book 'Being Mortal' by Atul Gwande, that really puts things in perspective and helps with discussing these life-ending issues. My husband and I and our 3 children all read it a couple of years ago. My husband has a friend who visits regularly and they listen to it. Many of the physicians we know have read it, and are incorporating it into the way they practice medicine.
We also meet regularly with a Palliative Care doctor who is very gentle and helpful about finding out exactly what J is willing to put up with as far as the disease is concerned, and what he is not willing to tolerate. His wishes are written down, but can be amended at any time that his feelings on the subject change.
Palliative care is not just for end of life, but about making patients more comfortable at any stage in their disease. For instance, our PC physician prescribed pain patches to target areas of pain that were not being touched by the oral meds.
Good luck with this touchy subject.
Finoni
I have actually looked into getting this book. The man that wrote it did some utube videos that are interesting. Thank you for your advice Finoni.
I have read all of your comments. Thank you for sharing your experiences. When my husband 1st got sick we both went to a funeral home and made a wish list for he and I. He did not accept his terminal illness at first ether. My sister came for 2 days to help me go back to the funeral home and nail down some things. I talked to him again yesterday, and I think he accepts it more now than he did before. He is still quiet about it, but he was always quiet in his life.
I have found out some bad things that he did. It is very hard for me to care for him like I did before, spoiling him. Waiting on him hand and foot. I have accepted to still care for him, but the hurt will not go away anytime soon. We talked about what happened and where he is now in the disease. He broke down and told the truth, and said he understands the impact of the illness.
Our daughter is 40 now and has 3 beautiful children. She has moved on, and given the anger to God. Now it is my turn to do that, but it will take time. Thank you guys for letting me vent.
MT, I apologize in advance if I am being too intrusive. But some of what you mentioned in your post hit home. By "bad things he did", are you speaking of infidelities? I do not know if you are aware of this or not but early PSP indications can be personality changes, impaired judgement, and lack of inhibition and control. Some experience, hyper sexualuty. There can also be violent behavior, Turrets like angry outbursts( with excessive profanity) and acting out in other ways. Unfortunately I experienced all of these first hand. And no, knowing it could have been the disease does not make any of it easier to accept or make it hurt less. And there are times when I have actually said in frustration,"I'll bet you would have conducted yourself differently if you knew I would be the one taking care of you".
PSP is like a well paced run. After an initial spurt into action it is slow and steady then a race for th finish line. Let him have his
Your insights are so helpful. This is my J to a T! It's as 6 months ago he left and this new rude, vulgar guy showed up. He changed who I am and made me the "driver" and one of many who care for him and there are NONE! I am with him 24/7 and he doesn't know my name.
N, I am so sorry for you. There used to be one person on here who was experiencing what I was but she mentioned he had been this way their whole marriage. PSP just intensified it. Like it makes it easier to let out the dark side of your personality. And it does not help to know that if the situation were reversed he would not do what I am now. Every time a devoted male posts about caring for their wives on here it makes me want to cry. Such devotion. This disease sucks, and life does not seem to make much sense these days but I know one thing: I am proud of how I have held up. Never perfect but always there. I will come out on the other end of this a stronger, more compassionate person. And so will you and all of us on here.
Take care of yourself and next time he asks who you are or looks at you blanketly tell him your name is wonder woman
Thanks mthteach this is the one topic I have avoided. M knows the end is coming but she is fighting it and gets very upset if i try to discuss. Marie Curie nurses have suggested getting funeral plan in place but I cannot get my head in gear to do it. Talked to local vicar about M's mum (97 going strong) wishes and he asked about M gave me space and invited himself to see both of us in April. So I suppose logic is kicking in.
Thanks for bringing up the subject it is something that we as Carers should discuss but find difficult.
Best wishes Tim
Good luck Tim. It is definitely a subject we all need to know how to face, with or without PSP. I don't know if it is denial or ..."what do I say?"...that keeps us from the subject....Just last week,Bruce and I wrote our funeral wishes down so the kids could knwo what to do....I even have the music I want.
I love the instrumental piece in Neil Young's Hurricane.....That man knew what to do with just one string.... and Take 5 from Dave Brubeck and Hungarian Rhapsody by a pianist named Horowitz...sooo good!
None of these songs will be played after the funeral (or whatever)
No hymns though Flee as a Bird is pretty cool....just don't want that comin back on anyone when they sing it at other times.
I want to be cremated or donated....we have a medial college here...they can poke and prod all they want....Iv'e gone home hahahahah
B's brain will be donated to curepsp and organs to those who need them.
He wants hymns, Wayfaring Pilgrim and several others . If I die first he doesn't mind going into a retirement home so kids arent burdened.
Neither of us want anyone to have to speak For B it would be wonderful im sure...and for me they'd either have to lie and tell everyone how sweet and that I'll be missed......or tell the truth who knows maybe they can finally get what they wanted to say about me off their chest....go for it hahaha
So all of that and more is what we wrote and will put in a living will? or wherever......I just don't want my kids to have to do anything but throw the ashes away. No disrespect But this world is not my home, im just a passing through ... a hymn from Albert E Brumley...It's got a nice Am folk sound to it....
AVB
When we found out. I don't think we talked about it much. I was finding out more about it and didn't know where to turn (did not know you all yet) . In fact it was only recently I asked B if he understood that he was going to die from this? he answered with a no....and so we had a long talk...(nervous as I was...I usually talked about it by referring to my death instead of his.....example "when I die I want to be cremated...what about you Bruce?" etc .... When we talked about the seriousness, Bruce's apathy kicked in or maybe his fear because I don't remember him getting upset.....It is a discussion you need to have with your loved one...but how to do it I do not know. I waited too long I feel...but then again , what would doing it sooner have gained?
AVB
Goodluck
Oh my goodness all these comments have made me cry, I just don't know how I'm going to talk to Keith about it all when he still thinks he is going to get better and says things like "It'll all be over soon and I'll be back to normal, I wonder what I'll get back first, my balance or my speech?" How on earth can I tell him that won't happen and he will get worse? He starts to read the PSP folder and only gets so far then puts it down, this is all so heartbreaking and cruel, I don't know if I'll be able to deal with it when all I want to do is cry.....xx
Patriciapmr, I was that way the first year of his disease. I was angry at God. Now he is around his 4th year of the disease, I have accepted what is going to happen. It is still hard, but my mind is trying to look ahead in the planning phase. It helps that my relatives, support group, is helping me to stay ahead of what is going to happen. Time helps to heal all things. Thanks to God's blessings.
Pat, my husband was exactly like yours in the denial department. Now he knows exactly what is happening to him-I think. How much awareness do they really lose? He expressed his end of life wishes early on so that's settled. He had no interest in researching the disease either. Me on the other hand...
Just remember: you are stronger than you think you are.
There are so many different comments in these posts that I recognise and it is so heartbreaking. Ben had a fall 2 weeks ago and it seems to have really knocked the wind out of his sails, he has become very slow in mind and body. Today is his 64th birthday and the family are staying for a few days, we all went out for lunch and he didn't Utter a word and seemed so sad. We have discussed what the future holds but it doesn't seem to have sunk in, he also thinks his progression has finished but I suspect that he understands more than he lets on. He has already said he wishes he could have heart attack and go quickly and has also mentioned assisted dying several times. Wish I had a magic wand to turn things back to how they used to be. Xx
Katiebow, I agree with the quick death thing with my husband. I am not sure about the assisted dying. I think that hospice helps with that some when the time is close. There have been 2 deaths in our family in the last 3 years. In both of them hospice kept the patient drugged through out the time. If the assisted death happens over night, I am afraid the insurance would not be there. I am counting on it to bury him.
Katie, did he take a blow to the head? He could be suffering from concussion. Each head trauma my husband experienced took away a little more of his awareness and stamina. Early on he told me to kill him if he lost who he was. I said I am not killing anybody and if he lost himself how would he even know that it had happened? I hate this disease.
Hang in there.
Jayne
It's a very hard subject but was made easier when the ladies from the hospice came round last week to talk about a "Care Plan". None of the Dr's or nurses have spoken about this being life shortening only limiting. When it is out in the open it is easier.
Now it is time to rewrite my will and also to sort out power of Attorney.
hi
hospice consultant had some very difficult converstions with us and thank goodness, document now in place with all his wishes and DNR etc. just makes hospital admissions less traumatic. pasting power of attorney for health in place.
best wishes
julie x
I am in my fifth year, single, live alone. My funeral has been planned, will get my cemetery plot when the weather is good and my sister can take me to pick it out. Even though I don't want to spend the money, I will be moving to an assisted living home. This isn't what I thought retirement was going to be but....
I pray forGod to give me the strength to live with this disease and to die with this disease.
When the eating becomes a problem will I die soon, will I call for hospice? Here in the states they don't like to be called until the last six months. How long will I be bed ridden?
I never told my mum what was going to happen to her she just new she had a similar disease to parkinsons I didnt want mum to know what this disease would do to her it was very quick only 10 months from diagnosis till the end it was the kindest for my mum not knowiing .
CBD - Cause of death was pneumonia.
Is there ever a good death with PSP or CBD? 
