Just been reading all your comments about temper tantrums. My husband did suffer from them for years, long before we realised that something was wrong. I just thought that they were a personality problem on a good day, divorce on the bad ones! The problem was getting a lot worse, going from one occasionally to several a day. Of course, I now know it was the PSP, but at the time was very confused. When I challenged him about his tantrums, he said he couldn't understand what was going on (bells should have rang,but they didn't!) unfortunately S had a silent stroke three years ago, which totally changed everything. It was in his right frontal lobe and since then has shown all the PSP symptoms. The main one being APATHY!
Hence my question. From that day onwards, he has been a different person. No more tantrums, not even a little one. I can hear you all saying great, but honestly, it's horrible. He never has a opinion about anything, does not care about anything or anybody, just sits, won't try to do anything, just waits for me to do everything for him. I try to get him interested in things, but it's a huge effort, that frankly sometimes I have not got the energy. In our house it's me that does the shouting, I get so frustrated, when he can't be bothered to even move a book so I can put his food in front of him. I know it's wrong, that he can't help it, but there is only so much a person can take. One benefit is he doesn't seem to care about having PSP and all that goes with it, but equally, can't understand why I do! I am the only one that cares about what he is going through and what is going to happen in the future, because of his attitude, doctors think everything is fine, his children take his word that he's OK, so I really am alone in this dreadful world. Me against PSP and you're right I'm losing!
I am taking heart from you all and really feel for you if things are getting violent, at least I have not got to put up with that, but a little spark occasionally would be nice.
Heady
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Heady
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Oh, how I know where you are coming from and I feel so much for you.
Looking back, most of us who really know, see that it is the personality changes and NOT the falls that should alert us to something is going wrong, but how do you get the medics to accept this, they would think we were mad.
Sad to say, my husband has always been controlling over me so when it all started to get worse at the beginning of what I now know is PSP, it took us all a long time to get help. Not much of it was any good and we are where we are.
Yes, most of us can relate to what you have said , I'm sure. My husband has never been violent, always kind, considerate and I now realise how much he "spoilt" me. Now, however, he also has lost interest in everything apart from dozing in front of the TV. I have to tell him to do everything I need him to do to help dress and shower him. If I didn't he would just sit waiting for me to lift his arms etc. If I ask, however, he does do things. I am determined to continue to "live" though so have taken up interests I never had before PSP. If you are in the UK, Crossroads are brilliant for providing sitters. I have 3 sitters a week so I can go out and meet friends, attend my art class etc. Crossroads do not charge but the sitters are all trained and paid. Once a month I take my husband to the local pub and play darts ( something I'd never done before). He sits a dozes in his wheelchair and wakes up and applauses if I manage to hit the board although he rarely opens his eyes. I've also started to learn the ukulele but Colin could no longer get to the hall so I invited the group to meet in our home. With 14 ukuleles playing, my husband can't watch TV and claps along with the music, trying to sing sometimes as well. Last week we all played at the local pub and my husband came too. All the members of these groups have now become friends and all make sure they acknowledge my husband and help me with him as well. I think they have all googled PSP and are very understanding. Although we do a lot, it is not easy. Sometimes I am exhausted by the time I get him to the pub or to church, which we try to go to every week, but once there and amongst brilliant understanding people, it really gives me a boost. Everyone is different and needs are different but you sound really fed up, and who can blame you, but I found out very quickly that if I didn't do something to stop myself feeling isolated, no one else would do it for me.
I wish you both well Heady and hope you will find some way of changing the things you can because there is a lot you can't change.
Nanna B. (Sitting with my iPad on my lap with my dozing husband beside me and the TV yet again talking to itself).
Nanna, I love all of this! I am in the US-you make me want to get on a plane! You have the absolute BEST attitude. You are now my new role model Jayne G.
Wow! Jayne, I don't think anyone has ever called me a role model before. Your post made me smile as it reminded me of something I once said at work. A parent was discussing her rather "lively" son and asking if there was anything I could do to help him conform when at school. I told her I would introduce him to an older boy who could take him under his wing and be a good MOLE RODEL. She looked very confused and then said, " Thank you, but was is a mole rodel?". I felt very silly when I explained but we did laugh about it. I now think of that whenever I hear those two words.
Don't give up, and you're NOT alone!! We're here! It is really hard to find someone to understand, especially when it seems like only the major changes and struggles happen when you're alone with your PSP person. My husband doesn't have apathy per say. He has a hard time making decisions, so won't. I need to make all the decisions, major or small. we still have good days, which I am very thankful for. But there are times when we both are very frustrated. So hang in there the best you can. I tell my husband that every day is an adventure. Sometimes he gets it, and sometimes he doesn't. One day at a time, and just know you're not alone.
While I don't relate to the violence or true apathy from what my mom went through (there was definitely a perceived disinterest and withdrawal) what I completely relate to is that as the stages change, there is almost a longing for them to return. Like you said, just to see that spark again. Things that drove the family absolutely CRAZY, when the decline moved us forward and that stage was over, whatever it was that we had lost was grieved and missed. I found myself longing to hear her clear her throat those last days. It is a painful, drawn out, rapid loss of your loved one bit by bit by bit. It was excruciating to watch her lose parts of herself and the things that she loved.
Anyone who is or has been a carer for a PSP sufferer will understand your frustration regarding the apathy that comes with this heinous disease. Unfortunately the sufferers cannot help these symptoms any more than the falling, the coughing, the incontinence, the speech difficulties, etc etc etc. need I go on.... All of us on here feel for you. We all know how difficult it can be and if I could send you a hug I would. Hang on in there, we're all thinking of you.
When my hubby first displayed the "extreme" apathy and before I understood more about PSP, my GP prescribed a low dosage anti-depressant for him. I have to say that this did help initially, but as the illness has progressed we are having to consider increasing the dosage. Let's face it, anything is worth a try. By the way, maybe you would also benefit from a low dosage anti-depressant yourself. Believe me, it does help.
Hope you feel better soon and remember everyone on here is always willing to listen when you feel the need to let off steam.
Looking back, Tony withdrew into his own little world many years before the PSP was actually diagnosed, and it can be very hurtful. There was just one carer who could make him laugh, otherwise we just had to remember the good times.
It all seems like a bad nightmare now (we lost him in December 2012) - the only "positive" with caring for someone with a progressive illness is that you can prepare yourself for what is to come. It must be an awful shock to lose someone suddenly, without warning.
Tony was a very "hands on" creative person. It was not good to watch him lose that and he must have been frustrated a lot of the time - but as everything became such an effort, it was probably easier to do nothing. They say "patience is a virtue" so I hope your halo is shining right now.
Hang on in there, you can only do your best and I'm sure deep down he is grateful to you.
Oh Heady, I am so sorry you are going through all of this! And I am sorry for ALL of us. Yours was a gentle reminder that "the other side of the coin " is not necessarily better. I am a little confused about his "silent stroke".
Can he speak at all? Our histories sound so similar! I also thought the tantrums were about me doing something to agitate/aggravate him. He confirmed this and actually asked me to leave. I remained steadfast and stayed and eventually (3 neurologists later) he received a PSP confirmation. He however is already starting to experienced some apathy. He went through total denial ( of PSP) and tried to continue his normal activities until he experienced several head injuries from falling and had a head on collision driving. He is a little open to trying some things i.e. OC and speech therapies. But socially we are peronnas. He has lost it at several restaurants until it was suggested that we come in on a less busy night. My social groups do everything in couples so I am not invited to anything anymore. He does not want anyone to see him "in this condition", and I don't know how to say it will not get any better. I threw him a very small private dinner party for his birthday with just a few close friends and he was furious and would not speak to anyone all evening. He used to love movies. Not now. Or any TV programs. He likes the gym but keeps getting hurt there and refuses to give up exercises that are injuring him. I am in a weird place because he is not bed ridden. Therefore no breaks for me. If I leave the house without him he sneaks out in the car and comes back with new dents. (On himself & the car!). It is only a matter of time before he loses his standing mobility. Two of his doctors have suggested weighted walkers and a wheelchair for long distances. When I read all the posts from those with bed ridden loved ones I think we should be getting out and doing things while we can. But he does not see it that way. For my mom, (once she accepted her limited mobility) a convertible walker/wheelchair changed her life. She walked a little, I pushed her a lot! We went everywhere, traveled, shopped, museums, dinner & movies etc. She has passed now but those times were my most precious memories. I had hoped it would be the same with him. Sometimes I think it is the age difference but I see a common thread in everyone's posts. I guess I will keep trying. Good news is he has begun a course of mood altering medications that are lessening the continual violent episodes (and their intensity and duration). He gets frustrated a good deal but for things that seem to make sense. I am going to try to be more understanding and stop feeling sorry for myself. Thanks. Jayne G.
Heady, Hang in there. You're doing the best you can in this difficult situation called PSP. It is tough at times and at others acceptable. Feel like I'm on a rollercoaster.
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Jayne G.
New here Dad just dx with PSP :(
THEY JUST DON'T GET IT AT THE HOSPITAL
Just having a word with myself
