I have not posted

[JaydeeGee]

Hello Everyone- I read the emails I receive, but didn't realize that I have not posted. Today is a day, where I need to share. I have been diagnosed with PSP for 1 1/2 years. I was first diagnosed with PD. Due to my many falls, balance problems and the medicines given to treat PD not working, I was referred to Dr. Lawrence Golbe, a world renowned expert on PSP.

Based on his examination and findings I was diagnosed with PSP.

I am not able to walk even with a U=step walker- this has happened over the last 6 months or so. Around the house I use motorized wheelchair.

Earlier today I had a fall. The biggest problem is my husband. He is my primary caregiver. He expresses in words, that he understands what PSP is. The reality is that he doesn;t want to,is scared of accepting the disease, or whatever other reason. I;ve acknowledged repeatedly that being a caregiver is NOT an easy job.

Every loss of balance, dropping food and most importanly FALLS,he goes nuts and accuses me of not being careful.

His screaming and yelling at me doesn;t help the situation, It upsets me to say the least.

I had a physical therapy evaljuation on Friday. The physical therapist, clearly said, in my husband;s presence that we must face reality and see that I won;t be able to walk. What he can ty to do is strenghthen my core. but that remains to be seen.

Does anyone experience problems with their spouses not being understanding, but worst of all loosing their temper and being accusatory?

[Nathalie99 Partner]

Hi JaydeeGee,

Welcome to the community.

I'm very sorry about your diagnosis and how it severely impacts your mobility.

It's a difficult situation for both of you for different reasons.

It sounds like your husband is having a hard time accepting this is happening and maybe some of his frustrations are because he is grieving and unable to express deeper emotions.

Frustration and anger can sometimes mask other emotions like fear or sadness.

Do you have any support groups in the area, both for patients and carers, so that you can share with others?

I think with diagnosis like this there are a lot of very complex emotions and a sense of helplessness might lead to the frustration.

Talking to your husband on emotional level, that it isn't you being careless but the illness that is causing your loss of mobility and falls, might make him realize what he is saying.

It's hard enough to cope with a very limiting illness. It's even harder when there are tensions between you and you are not as supported as you should be.

I know that not everyone is patient while caring for someone else but I hope he can realize the emotional impact of his words.

Sending a lot of support...

[JaydeeGee in reply to Nathalie99]

Hi Nathalie- I apologize for not responding to your post. I am very overwhelmed by everything going on around me. I completely forgot about this website, my cognition isn't good.

My situation with my husband has gotten worse. Since the pandemic he has been home. He is my primary caregiver. He does everything for me. From showering me to getting me dressed. Takes me to all my appointments. Plus everything in between.

I'm very grateful for everything he does for me. I can't thank him enough. I verbalize my appreciation all the time.

The disease isn't my fault. He thinks otherwise. I fall because I'm not paying attention to what I'm doing. I drop food because, I want him to clean up. I can'r read back my handwriting because I don't write big. His belief in my situation is totally unrealistic.

There is a support group for caregivers on Zoom through CurePSP. He refuses to sit through it. I registered him, and gave a donation to virtually attend a Caregivers Conference on November 13, through CurePSP. He says he is going to attend. I keep my fingers crossed that he does. The following day there will be a caregiver/family conference. I will definitely attend.

Thank you very much for your words of encouragement and support.

[Beingindependent Volunteer]

Welcome to the group JaydeeGee. I’m sorry you are experiencing so much.

When a situation shifts people react. They don’t want change they want things to remain the same.

It’s very hard to see your loved one change and become so dependent.

It’s not your fault and hope you don’t blame yourself.

He’s just angry within it’s his resistance to the new normal. He wants things the way they used to be.

Men seem to be amazing at multitasking at work but it comes to their home they just want it to be everything the same no changes it seems to disrupt them emotionally.

I hope you can detach from his anger and recognize it’s him working it out inside.

In a cool moment of relaxation tell him how you feel tell him what you need.

Take care

[JaydeeGee in reply to Beingindependent]

Hi Beingindependent- It's true, no one wants to accept change in their lives. I would say, first and foremost the person afflicted with this disease.

I can also relate to family members, particularly if they are caretakers. I admit to the situation being difficult for (him). I express my gratitude and appreciation for all he does for me, all the time. To the most minute thing he does for me, like shut the light in my room.

His frustrations are beyond reasonable. My wish is for him to reach out to other caregivers. CurePSP has sessions just for caregivers. I've put it out there so many times. As the saying goes--you can lead the horse to the water, but you can't make him drink.

Yesterday was a very happy day. I met the new neurologist/movement specialist that took over for Dr. L. Golbe (he retired from treating patients). I like him alot. He is young, innovative, kind, patient and caring. I know we are a good match.

Maybe this new doctor can have a different approach.

Thank you Beingindependent for taking the time to respond to me.

[JaydeeGee in reply to Beingindependent]

Thank you for your words of wisdom. On your suggestion "to detach from his anger......" It's very difficult for me to do. It's his constant criticism that puts me in a bad place.

Unfortunately, the only time that he is more at ease is when we're out of the house. Out of the house "shopping", which we can't afford. We are careful on being safe when out of the house.

I feel like there is no hope for change.

Thank you once again for your words of wisdom.