Ignorance!!

[Wigwambob]

My husband seems ignorant of the way his illness is going to go. He does not talk about it and does not try to help himself. He watches television all day and apart from going for a little outing either in the wheelchair or in the car everyday this is his life at the moment. The more I read comments about end stages the more I worry. Should I confront him with the facts or should I let ignorance be bliss?

[AliBee1]

Hi. I don't think any of us want to know what the end stages are going to be like, even if we are the carers. I certainly would not want to. Tim Brown has written some brilliant books called the PSP Chronicles, available on Amazon that might help you to understand how your husband is feeling. He amazes me with how active he is in trying to fight what is happening to him, especially through an exercise regime, but even he frequently finds it overwhelming. Love AliBee

[Wigwambob in reply to AliBee1]

Thank you so much. I shall look him up on amazon, it might help.Hugs.

[Motts in reply to Wigwambob]

Tim's books definitely helped me understand PSP better than anything else. Sending hugs... Granni B

[Wigwambob in reply to Motts]

Thank you . I am looking on amazon for the book. X

[LuisRodicioRodicio]

Hi Wigwambob!

I'm sorry that PSP has entered your family.

In my opinion, ignorance does not bring anything positive, especially for the caregiver and their environment. The patient must know the basics of their situation: "The patient suffers from a rare disease for which no specific treatment is yet known, although there is promising research underway The important thing is to treat the symptoms that are produced. The patient is not going to die of that disease."

If you wish, I have some documents where I have been compiling symptoms and solutions, collecting both our experience and that of other caregivers who have shared their experiences in the chat.

Hug and luck.

Luis

[Wigwambob in reply to LuisRodicioRodicio]

Thank you Luis. You did post a very comprehensive record when I first joined but I can't find it amongst all the other posts so would be grateful if you could do so again. It was enlightening but also very scary to realise what was to come. My husband can't read or write anymore so I will have to let him know verbally and I find that very daunting. Are you a carer too?Thank you for your response.

Hugs.

Sylvie.

[LuisRodicioRodicio in reply to Wigwambob]

Hi Sylvie!

I send the documents again.

I was the main caregiver (thankfully I had effective help) for my wife for 8.5 years. She passed away in 2020.

Hug, courage and luck.

Luis

[Walking18 in reply to LuisRodicioRodicio]

Please could I be included - my mum was diagnosed last year with PSP after years of being treated for middle ear problems and vertigo , it was only when her falls became more frequent, mobility declined further, speech slurring, mood changes and apathy was she given the diagnosis when hospitalised after being laid 10 hours on the bedroom floor after a fall.I would be extremely interested to read your documents

[Kayelless in reply to LuisRodicioRodicio]

Hi there. I’m very new. I’d be grateful to read your info.

[maxandpoppy]

I struggle with this. We have a routine that gets us through the day and tv and books to enjoy together. But what is Alan thinking about what is happening to him???. He speaks very little so does he feel he just couldn't make the effort to say for example Am I going to die? Or is it the apathy which apparently happens with this condition? Most of the time he eems stoical and sometimes almost content. Should I disturb this by explaining what is happening to him??

[Wigwambob in reply to maxandpoppy]

Exactly my problem. Simon has always been a very stiff upper lip sort of person,keep quiet and carry on so it is very frustrating but should I let him live in blessed ignorance....

[Perrywrinkle]

Hi Wigwambob, I sympathize with you and understand your dilemma. My husband knows what the future holds as he degenerates from CBD. We have talked about his end days and whether or not he wants extreme measures to prolong his life, which he does not. This is important for both you and his drs to know and it should be documented. I think it would be beneficial to discuss this with his dr or social worker. As for watching t.v. all day, that is exactly what my husband does and I've wrestled with guilt about it. He sits in his recliner and can no longer walk without assistance so helping him to the toilet and back to his chair is all the exercise he gets. About a year ago I finally decided that nagging him was doing no good and only making both of us miserable. He is very much aware of the importance of staying active but he just doesn't care and so I let him be. I'm at peace knowing that whatever time he has left, at least he's relatively happy being left alone. We do manage to find joy in small things, watch TV together in the evenings and we find things to laugh about. I often read aloud to him, when he's in the mood. I so hope someone can get through to him the importance of having a plan for his future, for both his sake and your peace of mind.Sending virtual hugs to you!

[Wigwambob in reply to Perrywrinkle]

Thank you so much. The exact same situation here so I shall try to have a conversation with him but I am dreading it. I also have stopped nagging😉.Sending hugs back.

[easterncedar in reply to Wigwambob]

One of my greatest regrets is that I didn't understand earlier how clouded my sweetheart's mind was getting, long before he was losing his physical abilities. I nagged him to remember things, was annoyed that he didn't follow through on plans we'd made and so on. It became obvious later, especially as I went through his writing and his phone messages and could see how his awareness had been incrementally closing down. His personality was always so dear and true, I just didn't see how much he was fading. My point is that your husband may not be able to understand fully what is going on. Tim is an exceptional case, I think; not everyone keeps such clarity .

[Wigwambob in reply to easterncedar]

Thank you eastern cedar.I have started reading Tim's book and as you say not every one keeps such clarity. My husband was a very organised able company director but I did not really think anything was wrong when his writing started deteriorating or that he had been reading the same book for 6 months. Looking back it started before he retired 6 years ago but he has only been diagnosed just before lock down. He has since deteriorated quite rapidly so I am still debating what to do?

[Debspottery1]

My husband is late stage 7 yrs PSP. He doesn't seem to accept what is happening, which doesn't surprise me as he always denied anything that was unpleasant. He is aware of things he can't do, but the impulsiveness takes over frequently. I think I'd call it willful ignorance and he'd say it was his fighting instinct. In any event, I clean up when he falls, or breaks something he crashed into, or has incontinence etc. - and that is a pattern throughout our relationship- so no surprises. Lately, it's more concerning with some hallucinations and loss of memory. He's starting to hum or giggle, not something he used to do, as well as chatter to himself. I don't think he can handle something as deep and serious as the end of life issues he will face. As believers this caused me some concern, and after a while, praying about it, I came to the conclusion that we all comprehend our old age and death in our own unique ways, and he will do that on his terms. I do know that if i am going to keep my sanity, I have to stop stressing. We discussed PSP in the beginning, and I think he understood it as best he could. I hope that helps.

[Wigwambob in reply to Debspottery1]

Thank you. My husband seems to have similar reactions. He is going through a stubborn period and will not accept help so falls regularly trying to dress or undress. I too clear up the breakages but I am learning to clear his path. I have days when I let it go over my head but more often than not I stress and get very tired especially now that I know what is to come. I feel that he should know too but can't bring myself to sit him down and tell him. Anyway thank you, it is good to know that you feel the same way . Take care.

[Debspottery1]

Never ever feel bad or guilty that you didn't do enough. You are there for him. If the time comes when we have to have the conversation and explain where we are in the battle with PSP, I think we will know it- and we will know what to say. Stressing over any of this- especially the WHY did this happen part is useless. I do think it's important to tell them when we're just tired and need a bit of a rest. I think they internalize a lot and may become kind of self centered, as they have lost so much and become so dependent. I know if the situation were reversed, I'd still be trying to do things for myself- but yet every day I tell him what to do all day long...sit, let go, stand, hold on, what are you doing?, what do you need? - I wonder why he doesn't scream out in frustration. I try to make some of it humorous, joke about how I have to shave him my way, or wash his face and beard so I know he's clean and shiny. Or trim his crazy eyebrow hairs...Find those things that will make you smile later on in life. It takes a special kind of love and strength to do what we are doing, so be good to yourself.

[Vraic in reply to Debspottery1]

Right on target x