For the past four years my partner has been experiencing changes in vision, speech and balance. In late April of 2020, a neurologist diagnosed her with PSP during a Zoom call in the first wave of COVID-19. Since then she has been hospitalized twice for falls. She falls a lot, and in April of 2021 was hospitalized for the second time with a broken hip. Our house is being continually retrofitted. Care workers come in each morning to assist with bathing and dressing. What a challenge it has been learning to be a primary caregiver for this brutal disorder! For the past two days she has been imagining that our son and daughter (now grown with families of their own) are present in the house... as children. I did an Internet search for "PSP and hallucinations." That brought me here.
The roller coaster of PSP: For the past four... - PSP Association
The roller coaster of PSP
Sunward, you have found your sanctuary away from your circle of people in your life ….a place where people from around the world come together over the brutal heartache of PSP & it’s devastating emotional/physical effects. Feel free to ask, react, vent about anything you or your partner are going through. Everyone on this site has been/is connected to a loved one affected.
Thank you ConcernedEx. It feels so good to connect with people who know this place--and have similar challenges.
My ex passed away in August from a vivacious battle- I saw a 6’4’ healthy man deteriorate to diapers and 100 pound weight loss in two years. PSP is a nightmare.
Excuse my language….”it just sucks the big one” and we all know it.
Yes, it sucks big time!
No excuses required.
My husband who has PSP insisted one day that I put him in the car and take him for a drive to find our boys out running on the road. He coached cross country for many years and our boys ran for him. He was thinking he needed to check up on them. He always ran with them so I am not sure why he thought we needed to get in the car and look for them but our boys now are in their fifties and their kids who also ran cross country are out of high school! He has had a number of situations like that but I believe that he has been dreaming and when he wakes up he believes these things really are happening. I just try to explain to him that these things happened years ago or are not the way things are. I tell him that he was dreaming. He seems to accept that now but after getting him in the car and driving around looking for our sons, he made the comment that if we didn't find them he must have been dreaming. As long as we were in the car we went to the dairy Queen so all was not wasted! Hope this helps to know that this happens to others!
Dairy Queen? You are Brilliant!
roadrace, thank you for that story. It has helped me already. A short while ago, I heard her trying to call me on her cellphone. I got that sinking feeling. She had gone to the bathroom--had she fallen? She wasn't in the bathroom, though. I started upstairs and found her sitting on a step halfway down. She had gone up to her (former) bedroom to get some clothes I hadn't been able to find for her. Going upstairs was o.k., but coming back down was tough. We got her back to bed. She was exhausted!
Before she went to sleep she showed me a cut above her eye. She said she had "banged it on the corner of the blinds" when she fell two days ago. I looked where she was pointing to: a glass doors with fabric blinds. There was no sharp edge. I said: "You think your cut was from these cloth blinds." She said yes. Your story was fresh in my mind, so I just said: "Yes, we'll have to fix that," and she drifted off to sleep.
Glad it helped. Just a couple of hours ago, my husband asked me to go out to his truck and get a loaf of bread he left in there. We used to live close to the Amish and he would often buy bread from them but have since moved further away. Plus we sold his pick up about 5 years ago! I just told him he didn't need the bread right away because he just got done eating. When he wakes up, he will have forgotten about it!
Great ending ….. hope you both got lots of treats.
It’s amazing, outside of the common thread of symptoms, how PSP affects people so differently!
Hold on to your individual philosophy …. You seem to have a great attitude.
I hope you find this site as helpful as l have. SendingHugs... Granni B
Glad you have found this group, I found it such a help on my journey with my Mum. People here understand far more so than the medics who have probably never heard of PSP, let alone had experience of the condition. The number of times I was told (including by Neurologists) that something wasn't PSP related and would come on here and find other people experiencing the same. We had many times when Mum would appear to be very much in the present but also the past at the same time, wanting to get the "children's tea", asking carers to take me to school etc. .
It's hard, but I hope you can still find some things which you can both smile at and enjoy each other's company. xxx
Its sounds like some dementia might be peeking in. The best advice I got about that, was to meet them where they are. If they want visit the past, talk about it with them. If they think they are somewhere else, be there with them. My husband had dementia. He also had hallucinations, and with those he would actually see and hear things that were not present, sometimes very scary things.
I'm so sorry yall are on this journey. We are all with you. 💜
A big hug.Luis
Sorry your on this journey, it's certainly a tough one. This site has given me so much information, its really been a great help. I have raged on here many times, mainly about lack of support and social care in the UK. (Don't get me started) Take care
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