Just a quick question. Does your love one with this awful disease become selfish and demanding? I finally, after many suggestions, made the decision to take a break and go on a vacation. When I told my sister of my plans and why, her first reaction was "What about me? Who's going to take care of me?" She never expressed a concern of what would happen to our father, who I also take care of. This is only a single example of many statements that kind of hit me the wrong way. Anyway, I was just curious if this another symptom that we as caregivers have to endure. It's not a pleasant way to spend a day among the other things we deal with.
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Gracie_Girl
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Hi, I don't think it's just a PSP symptom, but a serious illness one. The whole world just revolves around the disease, there is nothing else happening out there, bar PSP for your sister.
This is where all our guilt feelings stem from, we know there is life outside this evil illness and occasionally need access to it. I am afraid it's a case of "be cruel to be kind!" YOU have to have this break, regardless what your sister may say, if you don't, she will NOT have the much needed care, that you provide!!!
So find a big strong box, drop your guilt feelings in it and high tail out of town as quickly as you can!!! ENJOY your break!
Thank you, Heady! Your comment was spot on. And made me have a chuckle. Hehe. It's not so much as feeling guilty about leaving my sister, it also makes me feel guilty about leaving my dad. Poor man, unfortunately, he has taken a back seat to all of the dealings with Sis. I don't spend near as much time as I should with him. But, after discussing the situation we're in, he understands how hard it is on me and agrees wholeheartedly about me taking some time off. God, I so love this man!
So, Yes, I am counting the days and can't wait to see my friends again. And I will thoroughly enjoy myself.
Don't feel guilty. Make suitable arrangements for your sister and your dad and GO. You need it. But yes I do think the selfcentredness is a symptom of PSP. The capacity for empathy is impaired and they are largely unaware of how what they say and do affects those around them.
Have a lovely break and try not to let it get to you (impossible I know but you can try!).
Yes, as Vickie said, it can be a symptom of PSP (as well as of any serious illness as Heady suggested, but in a different way.) Psp can have a real effect on the way emotions are processed and displayed. Each person reacts differently! So don't blame your sister but DO take some time for yourself! Rest! Enjoy! Recharge!
So does your sister have PSP too? Or just your dad or is it both? I read the other posts and I'm still confused in that regard. However I do agree that taking a break should not be controlled by anyone else but you. You sound like you are the primary caregiver and with that you are now the one who needs the care....
Go and give it to yourself . Be happy, no guilt, just fun
My sister has PSP. She was diagnosed 2013, but showed early signs in 2011. My dad is 100 years old. Health wise, he is in great shape. He has a few problems, high blood pressure, enlarged prostate, history of mini strokes, and mild dementia, but healthy as a horse. His doctor is always amazed when he comes in. Unfortunately, he gets the short end of the stick when it comes to attention from me. Yes, I am the only caregiver. I don't have any brothers or sisters. Occasionally, two of my cousins come and takes care of one while I take the other to appointments. I have hired some help from a home health agency when I can't get someone to stay with my dad. And I have hired a maid service to come in every other week. I couldn't live without them. I am the head cook and bottle washer and launderer. Ha! Also, I take care of finances for both. I do have the attitude that if I can't do it, I'm not going to kill myself to get something done. I will hire someone to do the job for me. But, as you all know, running a house is definitely a full time job, then when you add 2 people with health issues, one particularly bad, things can get out of control real quick. I have learned to a certain degree that I can't do it all and don't be afraid to ask for help. But, I have reached my limit with my sister and she has hit that last nerve. Right now, I don't have much left to give. I Do need the break. I just needed convincing. It's 7 days and counting. Lol!
Thank you for your reply. PSP robs the cerebral cortex (more specifically the supramarginal gyrus ) of many things, one being empathy. I do hope, no pray that you have scheduled appropriate care for your sister and dad as you have your much needed vacation.
I am glad to hear how healthy your dad is.... kind of proves that PSP may be a hit and miss thing......But still all three of you need care, and I hope you all get what you need.
I never would go if I didn't feel comfortable about meeting their needs while I am gone. My sister's best friend is coming to stay with them full time along with 2 of my cousins helping through out the week. In addition, I will have hired caregivers to come in at the peak times that they would need help. Since they don't need any extra stress, I'm having my dog stay with her vet so they can watch and give her, her medication when needed. I have thought long and hard about this and I feel that they are well cared for. If anything, they are going to be spoiled beyond belief and I won't be needed any more. My sister's friend has told me all of her "plans" to take care of them, so that they can have their own "vacation". That should be interesting.
Good Lord girl what are you worried about...If someone offered to stay with Bruce, well I'd say no....I'm too much a control freak but dang I'd like to be able to say yes...Go, maybe keep the dogs there as nice diversion....oh shoot don;'t let me throw a wrench in your plans go and have fun...where are you going...did you already say?
Clearwater, FL That's where I spent most of my childhood and early adult life. I have many "old" friends I haven't seen in 5 years. They are dear to my heart and have been a great source of support. I can't wait. I didn't think I would ever see them again.
wow white sand beach westerly winds good friends wine coolers(?).....too beautiful
ooh and don't forget your old friends here...when you get back tell us a fun thing you did!!! ...I want to say aloha...but im on the wrong beach hahaha
It's another one to add to the ever growing list of symptoms. I hope you go on your vacation, enjoy every minute, rest and recharge your batteries. Nanny857 x
I'm lucky too, in that W is going to stay with our youngest daughter and her family for 2 weeks while I go to visit our eldest daughter and family in Australia.
Think of those lovely long hours on the plane, just being able to sleep when you want to, wave your hand if you want a drink. The only decision, chicken or beef!!! Oh bliss.............
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