Helpless...

[eurolynch]

Really tough this week. Mum is crying an awful lot. All required needs are met and due to communication I cant fathom anything else. Have been in and out of the bedroom all evening.....ignoring in some cases and feel so guilty but I dont know what else to do. Most nights Mum sleeps from bedtime til morn. I have a pager buzzer which comes to bed with me. This week is the only time it's been used. I've been loving caring then harsh and tough. Nothing works. I know Mum would not do this to me. Helpless xx

[raincitygirl]

Hi Eurolynch;

If I recall, your mum has CBD. Many cbd patients have an "emotional lability" component to the disease that isn't so much a part of PSP. She may not be able to control the tears, or even know that she's crying or why she's crying!

If she is having difficulty with communication too, it might be frustration or depression. Is she taking an anti -depressant?

It's very painful to not know just what is going on, isn't it?

Hugs for strength ❤️

Anne G.

[enjoysalud in reply to raincitygirl]

Anne, That was VERY helpful to me. Soon after Jeff had his PEG installed, back at home. His caretaker told me that Jeff had been crying most of the night. When Carlos (the caretaker) asked Jeff why the tears. Jeff replied that his PEG/stomach was hurting him.

Jeff had not complained to me. I asked Jeff if he had been crying over the pain of his PEG. He replied YES. I have always wondered if it was the PEG or coming to grips with the terminal illness of PSP. UCLA had said it was too soon to give a definitive Dx but thought it was either MSA or PSP. His Kaiser Neuro later gave PSP, showing me the DAT scan.

With so much overlapping of the brain diseases I now wonder if it was an emotional component,not the PEG or mortality. Water under the bridge, and I guess I need to accept Jeff's answer. Your response gave me food for thought.

I'm glad my son is not here suffering, but I MISS HIM.

Love, M LosAngeles, CA, USA

[raincitygirl in reply to enjoysalud]

I would miss him too! He looked like a very special young man. I'm so pleased we got to enjoy the lunch he bought us last February! ❤️

[enjoysalud in reply to raincitygirl]

Me too!

[Wardy01]

Feel for you, we are going through the same, with my mum in law. The worst thing is not being able to communicate I hate this F..... illness it’s so cruel

[Dadshelper]

Dad had a few emotional spells but they were short lived. I knew what caused them...

Ron

[SewBears]

I went back and read a post that says your mum is immobile and incoherent. I’m wondering if she’s aware of what’s happening to her and she’s frightened. Is she able to answer yes or no, or give a thumbs up or down? Could it be lack of stimulation? Maybe she’s bored or just sad. Who isn’t with this awful disease? I hope tomorrow is better for the both of you. Difficult times 💐

Xoxo from I SewBears

[eurolynch in reply to SewBears]

Mum does have alot of support and goes out at least 4 times a week. This illness is what she cant get away from and no matter what I do it will be the case. I am trying my best for her. She does also still laugh and that's special xx

[georgeg25]

My Dear late Wife suffered PSP and cried almost not stop. Dr was baffled. She was baffled. She could not give a reason. Gradually faded towards the end but still had the occasional spell. Very frustrating but lots of patience required. PSP sucks. Sending prayers and gentle hugs to you and your Mum. 🙏🙏🙏

[elvira4u]

I can’t tell you how much I appreciate you putting this out there!!!! I cried for an hour this morning on the way to work as Mum was distressed before I left and has been for the last few days. I was worried she was deeply unhappy. The carer who was also with me couldn’t figure it out and I just kept thinking she hates me because I’m not good enough to manage caring for her. I felt so terribly low but the posts here have reminded me that this condition is simply horrible and I just need to stay strong and keep trying xxx

[eurolynch in reply to elvira4u]

Today was all ok until 5 mins before bed. I totally get how you feel not good enough. Mum and I have been super close my whole life. Now I wish she could comprehend how much I love her. She can still cuddle me and that's a blessing. I ask her to remember I'm her baby and her best arm pats me. Life is life. PMA to all xx

[doglington]

It sounds to me you are doing all you can. Chris got very emotional and cried. With him it was usually being overcome be his feelings for others.

I believe emotional incontinence is a symptom.

Like other symptoms it will pass. Try not to take things personally. Except the good ones !

Love Jean xx

[Doublereeder]

When your Mum cries are there tears? Only when Mum's been crying of late (reasons known and not always PSP) she says there are no tears anymore. Just wondering if that's a PSP symptom.

Hope you're able to fathom out why soon. It's awful wanting to help but not knowing how to.