Hubby recently diagnosed

[Fly-26]

Hi, I'm new to this, hubby was originally diagnosed with Parkinson's, but now turns out it's PSP. He seems to have periods where he's very down and wants to give up. He's created a bucket list and sometimes it feels like it's all about what he wants,

[Bergenser]

Dear Fly-26

I’m sorry to hear that your husband and you are on the PSP journey. There are hard days ahead, hopefully this forum can help you as it has helped me and others.

It’s sad to hear your husband has down periods where he wants to give up. This is natural but still really hard to be around. It takes a special kind of resolve to be a carer for a loved one with PSP. Even at early stages you may find that they lose empathy and get very self centred. I don’t know your ages - whether you are still working or retired, you will need to watch out for yourself as well - there has to be a life outside the hard reality of caring., so yes, you must find and do things for yourself as well.

The bucket list sounds like a way he is trying to cope. Is there room for it becoming about shared memories? While you are able to enjoy new experiences together it is really worth doing - even if it is hard.

I found that while my husband was trying to get to terms with his PSP diagnosis (and while the memory of his mother’s journey with Parkinson’s disease was very fresh on his mind) he would have periods where he would be pushing me away - consciously or unconsciously. He might say things like “you didn’t sign up for this” or “just put me in a home” (or worse) - or shout at me that I was a stupid woman, that I didn’t love him and that I should get out of his house 😥.

At times it felt like a “test” and I had to remind myself of everything we had done together and why I loved this man that was changing before my eyes.

I did find that it changed as his care needs grew; he appreciated the help and didn’t always take it for granted. Some times he would almost be back to the caring man I fell in love with - and even towards the end he would still be there.

I would mention, when we finally got a proper consultation with his neurologist, the symptom that bothered him most was how his emotions felt out of control. A low dose of Citalopram made a noticeable difference, and two years later it was increased. It didn’t take away his ability to have and express a wide range of emotions; overall he seemed positive and upbeat despite everything PSP did to him.

I wish you the best. Please use this forum to ask questions, share both the positive experiences and let out a rant when you need to. We all understand.

Hugs and hope xx

🫂🌻

[Fly-26 in reply to Bergenser]

Thank you for your kind words , we were just getting our heads round Parkinson's when they confirmed PSP. We're both retired, didn't quite envisage this.

Xx

[Diggerandsam]

Dear Fly-26, as a PSP sufferer myself I can well understand how your husband feels. I often feel that way too and often wish I was not so mentally aware of the possibilities of this condition to come . Roll on the Assisted Dying Bill. I doubt it could help me as it is, but once it’s here it can, hopefully, be extended

[RedWriter]

Hi there,

Your post really resonates with me. My Dad was diagnosed a year ago after being symptomatic for the previous 2 or 3 years. It took 2 years to see the neurologist. There's no sugar coating the rough road ahead.

Dad also has empathy problems and periods of depression and apathy, all of which are symptoms of PSP. We tried him on Sertraline to brighten his mood but he didn't get on with it.

Because he's 77, he's also of that generation and mindset which finds it difficult to accept help. The very idea that he cannot do all that he used to, is very emasculating for him. Lately his fuse has shortened greatly and, whilst he rarely gets angry as such (yet), we've noticed that his impulsivity has increased - eg. trying to do things he knows he can't do while we're out of the room, speaking without thinking (on the rare occasions he speaks at all), and just generally behaving without a filter. He regularly refuses or forgets to use his stick, which is essential for him now, but every time we remind him to always take it with him, he looks at us like we're telling him something for the first time. There's nothing wrong with him, cognitively, I think he's just so disconsolate about what's happening to him, and frustrated with his speech difficulties, that he's just given up trying to say anything at all to us, which upsets us greatly, but also means we have to be psychic to a certain extent, and try not to leave him alone at any time as we've no idea what he might attempt to do.

Mum and I recently returned from taking him to Cyprus for a week, probably his last holiday abroad. One day a rather overweight lady walked past us and Dad suddenly just blurted out "Look at the size of her!" Mum and I were mortified, as this is something Dad would never have vocalised even pre-PSP, but because his brain was thinking an instant thought, it's like the usual neuron-journey between brain and mouth wasn't blocked anymore and his words just freewheeled out of him. Much later, we did laugh about it (no offence to that poor lady), because the cruel irony of his sudden, perfect speech was not lost on us. We barely hear Dad's voice anymore (we still can't persuade him to try the voice banking yet), but in that one moment in Cyprus he was as loud and clear as a bell.

It really is one day at a time with PSP, as I'm fast learning. I'm glad you've found this forum as the folks on here have been an absolute godsend to me, especially in my dark times when I overthink things about the road ahead and end up a hot mess in the corner of the sofa.

The best advice people have given to me on here is to try not to think about the future and to truly live in the moment. PSP has so many symptoms and so many outcomes, not everybody's case is the same, so it's no use worrying about some of the PSP outcomes which may never happen.

Also, as others have said, it's essential that you make time for yourself, even if it's getting up an hour earlier before your husband and having quiet time just for you. There is a wealth of help out there and, even though little is known about PSP, the love and kindness of strangers is largely what has got me and Mum this far.

It's a cliche, but be kind to yourself, and remember that many of the roadblocks ahead in your husband's behaviour will be down to the PSP, not him. I tell myself that every time Dad does or says something unpredictable or worrying. It's not him being obstinate or selfish or unempathetic, it's the disease. Dad's still in there, wholly and absolutely, and we're taking fairy steps both in how we try and battle the disease, and also in how to persuade Dad to accept some more of the help that is out there. What he is yet to realise is that there is much he can do help himself, but he's not interested, largely because if he reads up on PSP, he knows it will be dark reading (and it was thanks to the guys on here who pointed that out to me, because it was something I was getting very, very frustrated about, him not facing up to what was happening to him, but sometimes ignorance really is bliss).

Add a few things of your own to the bucket list, so it becomes a shared mission. For those things you might not be able to physically achieve, think outside the box and try virtual travel experiences on something like the MetaQuest, below

meta.com/en-gb/experiences/...

You can use the Anywhr app with it, here anywr.app/ . We're thinking of getting this for Dad, even if it's just to stop him watching mindless TV all day and get him out of himself.

Whilst the road ahead is going to feel heavy at times, please take comfort in the knowledge that his love for you and yours for him is what will give you both the strength to face this awful disease head on.

You are remarkable and strong and selfless and loved. Above all, you are the safe space your husband needs and he is blessed to have you.

Take care of yourself,

Sarah

[Fly-26 in reply to RedWriter]

Sarah,Thank you so much for your message, it's good to know other carers experiences, will look into voice banking as hubbies voice is slowly getting worse.

Can I ask....... When you traveled abroad, was the insurance very expensive due to PSP?

Take care

Gillian

[RedWriter in reply to Fly-26]

Hi Gillian,

Dad had an ongoing policy with Co-Op but they had to pay another £190 on top this time around. It might be cheaper if you're just doing a single trip, one-off policy though?

Hope that helps,

x

[timbowPSP]

HELLO TO 'HUBBY'! THe whole thing is a bit of bugger, ain't it. But remember that PSP means Please Stay Positive! And if u can't hand it all over to the greater wisdom of Life, Love, the Universe , God, Goddess or whatever floats ur boat. THen chill, and look at ur benefits! My bucket list keep shortening

I am male, 83, PSP diag 7 yrs ago and fully engsged with life still, despite mobility issues, constipation, etc. etc.. I have made 6 pages of my own discoveries, suggestions, facts and information. Happy to email you a copy, but need ur personal e-address.

I am sometimes an 'independent loving' pain to my carer, who also lives with me!

Best wishes to you both, and send me ur address. TimbowPSP