My anger today was a real problem. It is pouring, dark, cold and I get that trapped feeling with nowhere to go to get out of here and my husband Bob following me around directly behind me. On and On and round and round...like an experiment. Two people in space capsule and one has PSP. These dark rainy days are the worst. So Bob decided to rip my house plants apart (gardening?) and I lost it. Later I apologized and he had already forgotten the incident. But I end up feeling bad and keep wondering why I can't be more cheerful and even tempered, like I picture everyone else is. This is very hard in so many ways I just wanted to make contact with you guys and draw strength from the community.
Jill
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zjillian
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Oh Jill, you need to spend 5 minutes in our house to know that we are exactly the same, well I am for certain!!! I should think I lose with S at least once a day. I don't have the "gardening" problem. Apathy won't allow him to do anything like that. S will just sit in his chair, not doing anything, I give him at least an hours notice to get ready if we are going out, , then half an hour warning, five minutes before we have to leave, he suddenly has to read the paper, still not showered or dressed! I could understand, if we were going to do something for me, but it's always his appointments. (I don't have any thing anymore!) or he sleeps all day, then at bedtime, when I'm desperate to go to sleep, he decides to be interested in something.
I think what we both have to remember is, we are married to men and just because they have PSP, it doesn't stop that serious problem!!! No doubt, like me, you regularly had your moments with Bob, before this evil disease came into our lives, why should now be any different. As I expect others will remind us, one day we will be longing to be able to have words with our husbands. While we are still shouting, it means they are still able to take part in life, if not completely to our satisfaction, but then, I repeat, when was it ever!!!
Thinking of you, as I sit, drinking coffee at 4.00am, pondering my life!
Oh, I do know what you and Heady are talking about! The impulse control problem is a tough one, and some days I catch myself scolding/complaining/whining all at once and I just hate the sound of my voice. He doesn't much care for it either, but it doesn't stop him jumping up and getting busy over and over as I'm trying to settle us for sleep! We lost another friend to cancer this week, just his age, so I try to be mindful and thankful; I still have my sweetheart, maddening but dear. On we go. Love and peace and a good night's sleep to us all. Easterncedar
Oh me oh my have just read this post and I now don't feel so bad. I have got up out the wrong side of the bed because I know I will need to change the bed because he decided he wanted to go to bed at 6 last night. I know it's not his fault that he wants his bed. But if he slept all night it would better but he seems to cat nap then spend the rest of the time jiggling around making lots of noise.
As much as I tell myself it's the psp that causes him to do things that get on my nerves I still have times that I have a face like a slapped backside then the guilt kicks in and I think I must be the only person I know that can get cross about things he can't help doing.
Deep breath plaster a smile on my face and start my morning routine. Yes we care for our loved ones but we are only human and not saints.
Thank you, thank you, thank you, I was beginning to think it was only me that got like this. It seems the more I try to keep calm the worse it gets. We have just started having carers thought this would make life a bit easier but hubby has now decided he needs to go to the loo at lest 5 times a day (they only come twice a day) and only when the carers are not there, he very rarely does anything and looks at me gone out when I get cross after the third or fourth time of hoisting him on my own. I wish it were different but as you say we are only human and this bloody illness ( my hubby has CBD) takes almost everything at least we still have our love even if it is buried deep some days.
OMG I can relate to everything you are saying. Please understand that it is great to get it off your chest and feel you are not alone with these feelings. It is so hard to keep calm and have patience with this terrible disease. Please get consolation from so many people who are in the same situation. Try and mind yourself and take time away from the situation when you can.
ANOTHER "JILL" IN THE COMMUNITY - THAT MAKES 3 OF US!
DONT FEEL SAD BCOS OF YOUR ANGER - MY PARTNER GETS V ANGRY WITH ME WHEN I TRY TO DO SOMETHING RASH - ALL FO THE TIME I HTINK HE THINKS BUT HE IS ONLY WORREID ABOUT ME I KNOW THAT.
\JJUST REACHING OUT TO YOU AND GIVIGN YOU BIG HUGS AND XXX
Oh Jill I am so sorry it is really hard.My husband had a tooth extracted on Monday and that triggered the misery.He wanted to take an overdose and end it all I was frightened to sleep in case he did take them.He gets through boxes and boxes of tissues. The empty boxes I kick down the stairs to where we keep the recycling boxes and then I stamp on the tissue boxes,this helps relieve the anger a bit.He feels he is a burden anyway and it is getting harder to find a purpose in all this.Can you take time out sometimes?I do so hope so.Thinking of you love P
I agree with ALL THE ABOVE. I would also add that I am angry that all our plans for retirement have gone out of the window and I feel very guilty all the time. I try to stay calm but there are times when like everyone I want to scream and I get impatient. My husband then looks at me and says he has to put up with more and I should be more understanding. I often wish it was me with this disgusting disease because I know the old husband would be more objective about it. My feelings are all over the place. Guilt, sad at what we have lost, fear of the future and resentment and losing the man I married. I don't understand any of it. I used to think I could deal with anything but have learned that we are all vulnerable and human and talking about it helps.
The continuous demands of nursing and caring for someone with this disease that none of us was trained for and when it is someone we love this increases the stress and pain.
You are doing great and need to remember you are doing the best you can and that is all you can do.
Do take care of yourself and don't be so hard on yourself - you are not superwoman.
Oh Jill, I wonder if there is anyone caring for a sick loved one who doesn't feel like this at times. I certainly do. My husband is totally dependent on me and the carers so doesn't follow me about anymore but one thing he can do is pull his convene sheath off and it makes me so cross with him. I rang the supplier for more sheaths and she told me they were supposed to last 24 hours. She couldn't understand why someone would pull them off. He does it when in bed so all the bedding has to be washed and if he is sitting on the toilet so his trousers, socks, shoes and floor is soaked. I was telling a friend whose husband died last year from motor neurone disease. She said her husband kept doing it so she taped them on with cellotape! I'm tempted but would never do that although I have threatened him with super glue which just made him, and then me laugh. He will also always ask to sit on the toilet if I am trying to get him ready to go out, or if I am going out and a sitter is due. He will sit there for half an hour and not do anything and I know he won't as invariably he has been earlier in the day. I've now started sitting him on the toilet an hour before we or I go out. I'm always worst on dull, wet dreary days. I get so frustrated with everything and end up eating chocolate, then I feel bad about putting on weight. So here we are, all separate households in different parts of the world feeling the same at times and ploughing on regardless. I always find something to laugh about even during the bad days though. On Tuesday I forgot to put the bin out for collection. I woke up hearing the bin van outside. I jumped out of bed in my night dress, put on my pure white dressing gown, ran downstairs and put on my clumpy black gardening shoes and dragged the bin out to the front. The van had moved about ten houses down but I wasn't going to let that defeat me. I ran up the middle of the road with the bin clattering and bumping along in front of me. Four bin men stopped what they were doing and looked amazed until they all laughed and one gallant young man ran towards me and took the bin from me. The bin was emptied and I then had to make the, what seemed like, long walk home, knee length dressing gown, clumpy shoes and hair looking as if I'd been pulled through a hedge backwards, to be passed by several of my neighbours driving to work. I just hope I don't end up on Utube.
NannaB - Thank you for my first laugh of the day - the mental picture of you running down the road after the binmen was just too much. The other people on the computers at the library were looking at me in the same way ...
Nanna, you made my day all I can say! Much love to you
JGC
It's a relief of sort to know that we are all in the same boat - I have a feeling that anger and the guilt and daily resolve to do better go with the caring role. I sometimes worry that the root cause of this anger is a deeper, unspoken, unshareable resentment at the way the dice have fallen. The unexpectedness and the unpreparedness. If it's like that for me, what must it be like for my PSP suffering wife? Then I watch the news on tv and the tragedy overwhelming people in the Middle East and Africa. The resentment doesn't go away but it's put into its place.
To all of you who replied to me....THANK YOU!!!!!!!!!!!!!!!!!! It is a treat to receive these posts..I wish we could all meet in person. What a party that would be!
I have been sick with the Costa Rican variety of the flu/cold/grip/demon possession? And that makes things harder. How wonderful it would be to sit down with all of you and just talk and talk and talk. You really have to be in it to understand. Last week I had sprained my ankle and had to go to the emergency room and could only find one dear friend who would stay with Bob. It was a disaster! He just went crazy upset. The one good thing about that was that my friend now knows what it is like living with PSP.
Thank you all again for your wise words of support. Thinking of you all,
I know just what you mean. I get so angry at the stupid disease, CBD. then I feel so guilty for being angry. My husband can't help it for being slow, but that still means we arrive late. Or he can't help it for being clumsy but that still means fragile things are destroyed. I hate to see the embarrassment in his eyes when he forgets, or the confusion in his posture when he doesn't know where to go. I hate the doctors assignment of my "job" which is OR (observe and record). We have no meds, no therapy except the gym, which we do 3 times a week, especially the pool with floats. He chokes often, falls a lot and is still the wonderful funny man I married. Just wish he could at least sleep through the night, so I could too. He's up wandering at least three times a night. I'm exhausted and I think that makes my fuse short. i wish we could all meet too. We do have a new psp/CBD support group which meets monthly here in New Mexico. That is nice. Thanks for the post, zjillian, and all the helpful replies. Make me feel not so alone.
How guilty we can all feel after loosing it with a loved one especially in the early hours of the morning. A repeated request to go to the loo only for nothing to happen. My husband has great difficulty doing any movement on his own, so it means getting him attached to the stand aid and then wheel chair and finally the toilet. Once he thinks he has finished the whole procedure has to be reversed. All of this is accompanied with constant moaning, he says he has no pain and doesn't know why he is moaning. We refer to this as PSP talking. By day it doesn't bother me, but woken from sleep I find it hard to keep my cool. Later I feel very unkind and guilty for having these feelings towards him when he has no control over what is happening. I also think about how would I feel being looked after by such a grumpy person?
It has been a wet dreary day here today. Sunshine does help to lift the spirit doesn't it?
Morning and another day...a long long long adventure. I think of this as Act III of my marriage. It is totally different, slow, hard, but I keep thinking "what am I learning?" what does all this mean? I am learning something about love?
Jill, Don't beat yourself up. This disease takes its toll on us all and we sometimes lose it. Just apologize and pour on the love and you won't have any regrets. The disease can define you. DON'T LET THE PSP DEFINE YOU!! Just stay the kind sweet person you've always been. Sometimes difficult but just keep saying "PSP won't define me!". My wife was the same person all the way through the disease even in the end. It can be done with effort. Hang in there! Hugs!! Jimbo
I am new to this site. Caring for partner of over 20 years with PSP in south west Turkey. We have been friends for almost 50 years so have a lot of shared history including much travelling. I have decided that seeing him through to the end is our 'last adventure'. He agrees.
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