Has anyone had trouble explaining the disease to the patient? I have tried to explain it but my dad isn’t grasping what I’m saying.
He knows things are not right, but doesn’t understand why it is happening. His eyes being one of them. I just don’t know if the patients don’t really understand what is going on or am I not explaining it correctly.
I know exactly what is going on. Many patients with PSP will have cognitive deficits, you may have to try a little harder and tailor your approach. If he can read, start there. Avoid the medical terminology such as supranuclear, it may well go above his head.
Tim
Hi Grape1, I’m replying in support rather than with an answer. I’m experiencing similar difficulties with my dad. For 4 years I’d expressed concerns about symptoms and I assumed it was denial there was an issue. Now he has a diagnosis, he doesn’t accept it. There are some moments of acknowledgment which seems to be progress. Where I’m really struggling is around risk awareness or lack of. He was staunchly refusing to use stair handrails until two falls last week. Stopping him climbing ladders, standing on chairs, using power tools, lifting my daughter etc are all things we have to intervene with to point out risk and it inevitably causes upset. It’s so tough for those with PSP especially where “lack of insight” appears as a symptom. All I can do is manage my reaction to diffuse, explain, and offer to help, hopefully without robbing him of his independence. X
That is where we are too. It is so hard, you want to help, to avoid dropping/spilling things. But, we recently have been watching ourselves on how much we are doing for him, taking away his independence. Many times he does not want to listen to things he shouldn’t do. Also he had Covid Pneumonia since Christmas and still has not gotten rid of it. It’s so hard to not worry myself to death. Praying he gets rid of the pneumonia or we will be going to a pulmonologist.
We are in the same situation. My husband - coming from a background of denial of anything negative, will not accept what he is experiencing, and also takes chances doing things that will cause him to fall. I often wonder if a person who is already a stubborn personality has more trouble with PSP because they think attitude will overcome. As it turns out in reality- my days are more complicated because of the concerns of his doing something that will cause falls or in most cases, cause him to aspirate, as he refuses to give up foods that cause him to choke. In financial matters, same story, he continues to use an account that is overdrawn, refuses to admit he can't handle the responsibility of a credit card. I've had to go part time so I can be monitoring at home, so finances are adjusted for me for life.Today we are in the middle of a snow storm and he is insisting he will get the snow blower out. I think his brain is remembering that he could do this a couple of years ago, and he can't connect memory with current reality until he experiences a fall or two.
I have to be the bad guy some times, reminding him gently that he just had a fall and wasn't able to get himself up.
Again, in his mind, I'm just a negative thinker. when I know if he falls outside, I'll have to call 911 to lift him up from the snow. As the spouse who lives with him with PSP, and having worked in direct care for years, I am looking out for potential hazards. The thing that gets me is that friends and family don't understand, even those who have experienced loss of loved ones though cancer and PD. Each day, we just do our best. I have faith, so I feel I have Someone to talk to and cry with. But it is an isolating disease, and requires so much strength from the caring partner.
If it were me with PSP, I would probably go through many stages of grief and anger. So I try to put myself in his shoes. I look at his body changing, losing weight, losing muscle, and see how quickly it robs him of any ability to do the work he loves with his music, working with tools, chatting with students, driving, eating out, playing golf, going to concerts, playing gigs...
its a lot to give up. Add to that the humiliation of choking on each meal. drooling, dropping food all over and falling in public. Grandkids are wary of him because he doesn't look the same. Can't imagine what it feels like to have people talk about you as if you aren't there.
So all of that is to say, be strong, patient and allow yourself time away so that you can nurture yourself and regain your own strength, which you will need.
Some may find Teepa Snow helpful on U tube- years of experience on doing things in safe and logical ways. God Bless.
This has basically been my experience with my mother. She is stubborn to the nth degree - generally it has been a strength for most of her accomplished life - but with CBD - it’s only complicated everything. I begged her to shut down her business years ago when she was struggling (I had to take it over in an emergency circumstance), she refused to acknowledge her CBD dx for 3 years (she thought all symptoms were due to Afib), and she’d routinely “fire” doctors who told her she had it(she went through 3 nuero doctors). She fell numerous times with dire consequences (in hospital one time for 3 months) even though we warned her endlessly about doing things that were risky. She called me up on the phone and screamed at me (notable because she never ever had strong words with me previously), when I’d mentioned tau protein as being a possible cause (she screamed for a full 5 minutes into the phone saying she did not have tau buildup or even any tau proteins at all). She became suspicious of me and told one doctor during a visit (in which I had to drive her there and help her into the exam room) that I could not stay in the exam room because I wasn’t to be trusted (fortunately the Dr. knew what was going on with her brain and told her that he respectably disagreed with her and that I absolutely needed to be there during the exam). I share to validate your experience because when I came here and heard a few others with a similar presentation of the condition, I broke down in tears of relief knowing I was not alone.
Oh, and the number one point on how I recognize your story - my mother also rejected all “negative” stories - would only accept “positive” points of view (and eventually to the point where she’d make up the positive when it didn’t exist). She routinely accused me of being “negative” (& to the point were I started to believe it about myself).
Wow. Thank you for your story. It helps me to know I’m not the only one who is treated as if I have done wrong when I’ve really sacrificed just about everything. I have to be logical about all of this. At some point in time I’ll have to admit I can’t carry this any more. I think I’ll know when that is. I’ll pray for all of you who read this too. This disease isn’t our fault. When it becomes damaging to our souls as caregivers we need to say enough. My opinion. In love.
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