Hello, i wonder if anyone can offer some advise please? My mother has had a UTI for the last month. She is now on the 3rd lot of antibiotics and doesn't seem to be clearing up. She has declined quite severely over the past 2 months and now has a diagnosis of phychosis along with PSP. Her neurologist said that it can develop with PSP. Can anyone shed any light on any of these issues please? My mom has changed so much in such a short space of time, she is refusing to eat and drink as she thinks she is being poisoned and we are finding the whole thing very hard cope with. Why is PSP so cruel? We feel we are already grieving as our Mom how we knew her is no longer here. Its selfish to feel so bad as its her thats suffering, watching this horrible illness take the person you love is just heartbreaking. How on earth do you cope with the feelings of complete helplessness and heartache? All we want is our Mom back. She knows how much we love her and are doing everything we can to make life as good as we can for her.
Sorry to ramble on, sometimes it al just gets too much and anyone who can help with some advice would be greatly appreciated.
Thank you xx
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Ell1e25
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Yes I think all on here would agree that PSP is a cruel disease both for sufferer and carer. It is so hard to see the people we love change and decline.
I'm afraid UTIs are very common in people with PSP and it is an ongoing battle to prevent and to deal with them. As far as the psychosis is concerned, it does seem to be common for sufferers to undergo personality changes and my husband certainly went through a period when he suffered from very vivid dreams after which he found it difficult to distinguish dream from reality. He often used to think he was being attacked and that he had to defend himself ........... usually against me!!! Luckily that seemed to be a phase which has passed now. The challenges of the disease do seem to change all the time - not always for the worse - sometimes distressing symptoms pass and you find yourself in a new calmer phase.
At least your mum knows that you love her and it sounds as if you are doing a great job of caring for her. Try to keep positive and hope for a better day tomorrow.
Hi, I'm sorry, I have no idea how to cope with the overwhelming helplessness and heartbreak, along with the complete tiredness and dread for the future. I wish I could help, I would normally start spouting on about taking each day as it comes, be positive, get help, take plenty of rest. But we all know that's a load of rubbish, none of us can do that. We are just that ball in a ping pong machine that gets battered all over the place. All we get from others, is "what a wonderful job you are doing," "I don't know how you cope" The simple answer to that is, WE ARE NOT!!!! There is no other choice.
PSP is an evil , evil disease that has robbed our loved ones and ourselves from everything we knew!
oh, Heady, you ARE tired. it's not a load of rubbish, even if you're not feeling it right now. Your words of encouragement have often buoyed me up. It's just this rollercoaster. Some days I think I can't cope another minute, some days I feel as if I am managing to keep things together amazingly against the odds. Some days the grief grabs me by the throat, some days I'm philosophical as hell. I'm almost always unbearably tired. Awful, isn't it?
As for all those maddening palliative phrases, check out this link. It rings true for us, too, doesn't it?
Thanks Easterncedar, yes, I am exhausted! Even sleeping at night, apart when S gets me to go to the loo, or change the sheets! I know the last few weeks have been busy, so I am trying to be kind to myself, but it's very hard on S, as I have absolutely no patience, never got a lot at the best of times! Hey ho, I will get through, don't how, don't know when, but I have before, I will again!
Yes I can agree with all you say, its so hard. I can relate to the comments from people. "He looks great, you are doing a great job" I wonder do people look at me I am exhausted. People call to visit and sit there while I make coffee or tea for them. They then leave and tell everyone they visited. How can people not see I need a break. Could they not take him out for a few hours and give me a break. Sorry for going on, this morning I feel very tired and must get on with it.
I am afraid it is part of the course - my wife is now convinced we are being burgled every night - if we were we wouldn't have very much left by now ! I try to think (not always successfully ) that my wife is still in there and the one on the surface behaving irrationally is the PSP person .It is hard ;it 's a cruel illness and takes so many different forms and all you can do is hang in there and love your Mom .
Georgepa
And I agree with everything that has been said and will only add that you have to keep plodding on. I do take one day at a time but not in terms of planning activities that will make this time memorable for my man with PSP; merely in terms of getting through another 24 hours. I quite like the fact that the symptoms keep changing as I can fool myself that the most annoying manifestations are only temporary - though I doubt the incontinence will ever morph into something easier to cope with. But today he goes to day care so I must leave this site and start long, slow process of getting him ready and then taking him there. I'm still plodding on......
I'm right there with you. My precious wife is probably in her final months with this disease. She's had multiple UTI's over the past several years, mainly because she can't control her bladder, so either she's been wet for too long (sitting in her adult diaper too long) or because we were using a Foley catheter. While the Foley appeared to be a Godsend and didn't require a lot of effort on anyone's part to take her to the restroom and she was typically dry all the time, they still frequently cause UTI's. To keep UTI's at bay, we usually kept her on a lose dose of Nitrofurantoin or Macrobid (50-100 MG) which can be prescribed by her primary care, her urologist, or neurologist. But when she got a UTI, we usually started her out with an antibiotic called Ciprofloxacin 500 MG. After the culture comes back from the urine sample (usually 3 days), it will tell if Cipro is effective or if some other drug is necessary. Most of the time Cipro did the job, but sometimes they had to put her on a strong antibiotic, such as Bactrim.
But sometimes UTI's get out of control and my wife had to be hospitalized (3 times in the past 5 months) and they would put her on IV antibiotics. Unlike many people with UTI's, my wife never complained of any pain in urination or any body aches. But she was more confused and would hallucinate a great deal.
She also started to refuse to eat and drink. Fortunately we had decided to have a feeding tube inserted last summer, which has been totally awesome. We can get her all the nourishment she needs and keep her hydrated and administer a majority of her meds via the tube. Was a very simple outpatient procedure to have it inserted and it's super easy to pour the feed into the tube and maintain. Gave us at least an extra year with my darling.
This is a very mean disease and I pray a cure will be found someday soon. I doubt if it will be found before my wife passes. I am going to have her doctor prescribe Salsalate (a NSAID which is currently being used in a clinical trial in California). At least it's an existing drug at your pharmacy counter. 1500 MG in the morning and 750 MG at bedtime. Worth a shot.
I feel for you with your mom's mistrust. I had to deal with that with my wife off and on at times. For a period of time she thought I was having an affair and cheating on her, which I would never ever do. She also sometimes questions her meds and wants to me to explain what each pill is and what it's for. Now that I have to crush everything and administer it through the feeding tube, she doesn't seem to question me on that anymore.
If you haven't been to this website, I encourage to you go to curepsp.org. They have a lot of info that might help you and your family.
God bless you and your family and I pray He will give you the strength and courage to fight the good fight and enjoy each and every day you have with your momma.
UTI are common with PSP and some other diseases. The person who is kept clean, very clean, "down there" will avoid most UTI. I know. Wife had one then I started cleaning her very well in the private places and it solved the problem. No more UTI.
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