Emotional Rollercoaster

[Lacey23]

My dear husband of 40 years was diagnosed with PSP and some days I feel empathy, but some days I'm just so angry with him for not being able to understand my feelings.

[Hidden]

So many of us on here fully understand where you're coming from,breathe,kick the cat,🍷🍺.

Dee in BC

[Lacey23 in reply to Hidden]

Thank you so much. Today I found this support network. I've felt so alone ever since this all started with loss of balance 2 years ago. The rage, sadness, loss of our future plans together. We're only 62 and 64. People are age are planning for a happy retirement. Resentment is a powerful emotion. It takes hold of me and I feel so mean. But I wake up every morning and try again.

[Hidden in reply to Lacey23]

You and your guy are the same age as us, we have been together for 37 years and always did everything together. It is such a lonely diease. It sucks the life out of everyone who loves the PSP suffer.

Take care

Dee

[doglington]

Yes. I struggle with love and anger all the time. It is a torment.

I'm sorry but it won't get better.

You can express it safely here !!!

love from Jean x

[Katiebow]

It's tough isn't it, I felt that at the beginning but am more resigned to it now and tell myself he isn't doing it on purpose. I feel I have put up an emotional barrier to stop me going into meltdown, not sure if this is a good or bad thing but helps me cope. I hope you manage to come to terms with the way things are as time passes, I am lucky that Ben hasn't displayed anger and has become very passive and apathetic which has its own problems but generally easier to deal with than anger. Hoping it stays that way! This disease is an emotional rollercoaster and you never know what's around the next bend. Try to stay strong although I know this is easier said than done.

Love Kate xxx

[Jafarrar in reply to Katiebow]

So well said. My husband was DC 3yrs ago. Lot of ups and down. It brings a lot of emotion. God Bless. One day at a time. Sometimes its hard to get out of bed not knowing what I'm in for that day. Love you all

[Yvonneandgeorge]

Yes I also struggle, he makes me so mad, then I look at them and I feel so sad, it is only normal to get upset when you have had a really rubbish day, with hardly any sleep xxx

[bsilverman]

I hear you. I don't even try anymore. It's now friends, family and this website. Sometimes it seems like this disease is at least as hard on the caregivers. I had a wonderful moment today when I locked myself alone in my car and cried. It was the first time. It helped.

[Karynleitner]

I feel exactly the same way. My husband is an incredible man and rationally I can even understand how he feels he deserves to be everyone's top priority, but he does things that are unsafe or a little goofy, also sometimes calls for me every 10 minutes. I have a lot of other things that must be done. Out of frustration I sound irritated. I always explain my frustration is not with him, but I feel bad.

Hang in there, you're doing great.

[Julieandrog]

Hi

Yep PSP what a darling! It is the cruellest thing to see your lifelong mate male or female lose any emotional connection. I miss the physical contact, but we are British , don't talk about things like that!

In some ways we are lucky(!) Rog appears to have text book PSP, so now is relatively easy to physically care for, immobile, non communicative and rarely interacts.

Me I accept now our lot, still feel we have been so cheated of a retirement , I finished work two years ago to care for him, and the roller coaster has not yet stopped turning!

Julie x

[LindaK12]

I feel like this too and this at times gives me a great feeling good of guilt

[JantheNana]

Sometimes I feel that he purposely comes up with new ways to torture me! Like waiting until I've just sat down to need something.Or getting up to do something unnecessary while I am out of the room and then falling. When I think rationally I know it is not on purpose but at the time it makes me so angry and sometimes I lash out at him .I pray every day for patience and strength.

[gypsywoman1947 in reply to JantheNana]

Gosh I so feel this is me , I am exactly the same. I feel he waits for me to have 2 mins to myself , then calls . Hate this illness.xx

[Brenive]

I believe psp is like watching a baby grow up to become an adult, only in reverse.The well balanced adult gradually returns , to a stroppy teenager , and then a child who disrupts every thing, and finally is back to when they were born totally dependent on its mum or dad.for every single need. I didn't have a son , but it looks like my husband may well turn into one.....Brenda. ..x.

[doglington in reply to Brenive]

I don't see that. Even a tiny baby is open to experiences, whereas the PSP patient is closed off - but needs the same attention as a baby.

I enjoy caring for babies but caring for Chris is very different. I do it but it causes me pain.

Jean xx

[JantheNana in reply to Brenive]

YES! When he first started losing balance and falling I described his walking as being like a toddler learning to walk.

[Javan]

This is the one you love ; these diseases may change things but they are still the same person. My wife has had CBD for along time but a smile or a sort of answer makes her the same loving boss as always.

[ketchupman in reply to Javan]

Beautiful. I'd give a trillion dollars to have my bride back to wait on her again. Miss her so badly. We all complain and then some day we look back and think, what was I complaint about? That was my precious bride who had no choice over this horrible disease.

Ketchupman

[Marie_14 in reply to ketchupman]

Ketchupman when our loved ones go we would give anything to have them back? However when they are here it's not so easy? It also depends on if you are alone doing the caring. How the person is. How old you are. Is your health good and so on.

So different when they are gone and you are alone? Then you think back to how it was? I am stuck thinking of him dying. In fact thinking of his last months. Wish I could remember something happy from when he was well but everytime I try I remember him being so helpless and scared. I can still see that in his eyes. He was so scared of what was happening to him and couldn't talk about it, even when he had a voice. Wonder how you get past thinking those thoughts?

Marie x

[ketchupman in reply to Marie_14]

I know it's a different situation for every person. For us, we are fairly young. Kim was only 54 and I was 56 (now 57). She never showed those traits. Always so sweet and innocent, although she was definitely mischievous and would attempt to do things for herself and create major messes which I would have to clean up and also cause injury to herself at times. Her final days came so quickly with aspiration pneumonia, which sent her into a coma during the last 2 days once her Oxygen level dropped too low. Hope I didn't offend or upset you I definitely know it's a hard road. And yes, a lot of my visions of her are those of her lying in bed those final days. But I still long to crawl into bed to carcass her and kiss her and tell her how much I love her. Oh how my heart aches. I wish I could man up and quit all this crying. I find myself walking down the street and start to think of her and suddenly burst into tears. Even after 10 months.

[Marie_14 in reply to ketchupman]

Ketchupman she was far too young to die. To die of this evil condition makes it even worse. I can understand your grief for her. You obviously loved her dearly. She was very lucky to have you in her life. You should be proud of the way you cared for her and your deep love for her.

She wouldn't want you to be so heartbroken. She must have been a lovely person to have such a decent man in her life. Don't worry about crying. It's normal.

I just wish I didn't feel so sad all the time. I haven't even been outside for nearly a week. Spent yesterday watching TV and crying for all the young people who died or were injured in Manchester. It is so very sad. Made me feel I need to sort my life out, as truly none of us know the day or time?

At least you go out so you are making an effort? Do you work now? I hope so as it will help. You are still young and your lovely lady would want you to live?

You didn't offend or upset me. I am constantly sad. It has only been 3 months in my case but I actually think it gets worse! There must be a time when it gets better but not sure when that is because everyone says how sad they are months and even years later. Maybe you have to make an effort to be happy?

It is all too raw for me to do that and I think the same is true for you. Don't worry about "maning up". You have proven you are a man many times over. Anyone who has to care for their loved one deserves a medal as it is the most stressful thing ever no matter how much you love them. You always think you should have done better? Or at least I do! You did a very good job from where I am sitting.

Take care of yourself and be kind to yourself.

Marie x

[doglington]

Sorry but I don't always find my love still there.

I have just had a meltdown with him. He refuses to respond to me and gets up, risking a fall as soon as I am out of sight.

I am 80 and caring alone. When he falls I have a lot of trouble, even if he doesn't hurt himself. I feel very resentful that he is so uncooperative.

He takes off his incontinence aids and I have to clean him. He is only interested in eating.

Bad day. Everyone says I am keeping him alive and well and I sometimes wonder why.

Rant over.

xx

[Brenive in reply to doglington]

You do it because you love him , so take the praise you deserve it...Brenda. ..x

[doglington in reply to Brenive]

I know Brenda. But sometimes it gets lost !!!

Jean x

[JantheNana in reply to doglington]

It does get lost.The thing that hurts me most is thinking that if the tables were turned and it were me that was ill,he would not lose patience with me.I can't imagine him losing patience with me.

[doglington in reply to JantheNana]

I have never heard anyone on this site say they haven't lost patience.

The combination of tiredness, worry and challenges. Inevitable. . . .

[Robbo1]

We were the babies of our group, now our friends are approaching their eighties, still going on holidays and playing bowls etc. while our world is shrinking....

[Lacey23]

I'm really overwhelmed and so grateful for everyone's support here.

[rriddle]

Anger is very common in "anticipatory grief." We have lots of articles on this topic on the Brain Support Network website, brainsupportnetwork.org. Here's a good one:

brainsupportnetwork.org/gri...