Does PSP ever mask dementia or is the dementia aspects part of it?
Mum is 68 and was diagnosed about 2 years ago. I am her caregiver and my biggest frustration is trying to talk to mum about anything. Her withdrawal is definitely an aspect she has but she’ll also say a lot of things that simply don’t make sense, she asks the same questions all the time and will not engage in a conversation at all.
She does thing in the house which I find really hard - she flooded the bathroom last night because she dropped her incontinence pad in the toilet and when she had a bowel movement she refuses to call me for help and ends up with stool everywhere but just leaves it and denies it happened. I don’t understand this. It is incredibly frustrating and I end up losing my temper and feel really bad.
We are working on bringing in a live in care giver for her.
Thank you
Victori
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westcoastgirl
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I think it is just one of the symptoms that some PSP sufferers have. My Mum was diagnosed through falls and having looked at the list of symptoms was worried about getting dementia symptoms. She asked her neurologist and he said, that it is a symptom and that some get it some don't, and usually after the first year or so symptoms that are showing get worse but new ones tend not to show.
So her balance and movement is so poor that she is now in a wheelchair and is unable to be independent, but has no dementia. Unfortunately for you it sounds like you are the opposite, mobile but showing dementia type symptoms. I do hope that you are able to organise care and support for yourself as dealing with dementia is so difficult. Best wishes. Julie
Julie, thanks. I figured it probably is the illness. It is so hard to deal with. I get so frustrated and then I feel bad. Mum has falls and needs support to walk but she is still pretty mobile considering she was diagnosed a while ago. So you are probably right. Thank you
Maybe a bit of both,my husband has shown sign of slight of Dementia but mostly stubbornness,PSP persons for some reason don't understand there limits/capabilities.my guys still tries to clean himself but its alwaysa bigger mess for me.For your health and well-being your going have to be straight forward with your mom.I have found that my guy will listen to strangers better than me.other things to try,baby monitor with video,bicycle horn tape near her bed and toilet.
It is understanding their limits. Mum is determined to do it and then there is a huge mess. I have a baby monitor in the bedroom but in the bathroom something might help so she doesn't have to shout for me and I can go in and help her.
HI THERE ! MY OWN EXPERIENCE WITH MY SISTER AND HER PSP ECHOS THE INPUT YOU'VE RECEIVED. LUCKILY A. DOESN'T HAVE DEMENTIA, THOUGH SHE WILL TYPICALLY RESPOND NEGATIVELY ( SEEMINGLY AUTOMATICALLY ) AT FIRST TO MANY SITUATIONS. SHE IS APPROX. 10 YEARS ALONG SINCE HER FIRST SYMPTOMS OF PSP. THREE PEOPLE INCLUDING MYSELF HAVE BEEN PROVIDING LIVE-IN CARE FOR OVER A YEAR NOW, WHERE PREVIOUSLY I WAS ABLE TO BE OVER AT A'S EVERY DAY PROVIDING FOR ALL OF THE ACTIVITIES OF DAILY LIVING THAT A. WASN'T ABLE TO DO INDEPENDENTLY. ONCE HER BALANCE DETERIORATED TO WHERE SHE WAS FALLING SEVERAL TIMES A DAY , STRENGTH WAS DETERIORATING, VISUAL FUNCTIONING WORSENED, EXPRESSIVE AND RECEPTIVE APHASIA WORSENED, INCREASING IRRITABILITY AND AGITATION RELATED TO THE STRESS SHE WAS EXPERIENCING AND THE PSP ITSELF, ETC... I REALIZED THAT A. COULD NO LONGER BE ALONE IN HER HOME SAFELY EVEN FOR A MINUTE. A. CAN STILL DO MANY THINGS ON HER OWN OR WITH MINIMAL ASSIST, BUT THERE IS NO WAY THAT IT WOULD BE SAFE OR ACCEPTABLE FOR HER TO BE ALONE , EVER ! SHE NOW SPENDS MOST OF HER DAY IN BED , WHERE SHE INSISTS ON BEING . EVERY EXERTION IS AN EFFORT AND IS EXHAUSTING FOR HER. I WAS AND AM VERY FORTUNATE THAT MY HUSBAND AND I WERE ABLE TO BE THE LIVE IN CARERS INITIALLY, SPLITTING THE DAYS UNTIL I COULD HIRE EXPERIENCED PEOPLE PRIVATELY. AGENCIES PROVED TO BE TOTALLY WORTHLESS IN THE AREA WHERE WE LIVE . UNFORTUNATELY, THIS IS THE CASE TO A GREAT DEGREE WORLDWIDE ! HORRIBLE !! A.HAS A U-STEP WALKER, WHICH SHE IS STILL ABLE TO USE WITH ASSIST. WE ALSO USE MONITORS; ONE IN A'S BEDROOM AND ONE THAT WE KEEP WHEREVER WE HAPPEN TO BE IN HER ONE STORY CONDO APT.. THERE IS ALSO AN ELECTRONIC DOORBELL TYPE BUTTON AT HER BEDSIDE, ELEVATED TOILET SEAT, AND OTHER PHYSICAL AIDES IN USE. THESE WILL BE CHANGED/ADDED AS NEEDED. AS DEMANDING AND STRESSFUL AS IT IS FOR US , IT IS HARDEST FOR A ! BEST OF LUCK IN PROVIDING FOR YOUR MOM'S NEEDS !! TAKE GOOD CARE OF YOURSELF ALSO ! SELF CARE IS TOO OFTEN OVERLOOKED, WHAT WITH THE PHYSICAL AND ALL OTHER TYPES OF DEMANDS THAT CARERS HAVE TO DEAL WITH !
I just had to say "hi" as I am also a west coaster (along with Dee, above.) I'm in Surrey.
My hubby's disease is CBD with cognitive impairment and increasing muscle impairment, but not the symptoms you are experiencing - sorry I don't have anything to offer
I just had my first case management conference with Home Health. The good news is there is some subsidized respite care available to m (I hope you check this out too - as Julie advised above)
The bad news is there is no subsidization for medical equipment (commodes, wheelchairs, collators, bed canes etc etc!) Every time I see the UK folk say "Contact Hospice - they provided me with ---" I am so envious! Hospice doesn't operate at all like that here in BC. I think our Health Authorities could do a lot better helping us manage chronic care at home....But this is not meant to be a soapbox for politics!
I wish you good luck and hugs for support with your Mom.
Anna, thank you for reaching out. I have found myself in a bit of a nightmare situation because of the lack of chronic care help at home here. My father recently passed away from cancer and he had amazing end of life care at home and at hospice. But not with mum it is like we have just been cut a drift!
We go to the movement disorder clinic at UBC but honestly each visit feels so useless because there is so little they can offer in terms of prognosis, treatment or help. And then we are sent home with no idea where to go to help mum manage. I haven't gotten anywhere with home health care (we are on the island) because we don't qualify for a case manager because we have been privately hiring nurses. None of it makes any sense to me and I am an RN myself. It is so incredible frustrating. I am basically my mother's case manager.
I feel like I need to vent to someone out there who understands how hard it is to have this, or CBD, thrown at them and then just left to figure it out. We are in the process of hiring an overseas live in caregiver as it seems like the best long term solution.
I was hoping to find respite care at some point but even that seem impossible.
I do have the number for someone in the community out here so I am going to try it again.
Victori, you are more than welcome - You are part of this community now, and if all we can do for each other is listen to the needed rants and provide some support and hugs - that is still more than we get from most people!!
Yes, our health care system is great at acute care still - but not great at chronic care in the community. You hear the UK folk talk about a "PSP team" and the PSPAssociation promotes this multi-disciplinary approach. We have to patch it together ourselves! We also go to the Mowfaghian Centre for Brain Aging at UBC. Great diagnostic skill there, but again - care is basically going to your G.P. for symptoms as they arise.
I know that Community Health/Home Health will assess each client based on medical need and financial need: We were assessed and given a "cap" - i.e. an amount that we would have to pay for Home Support hours, but then if the cost of the hours we need exceed that "cap" Fraser Health picks up the rest. So there is subsidization there. They do a financial assessment looking at your tax returns etc. You don't have to be "low income" to get some subsidization. So do try again (You are in Island Health Authority I assume).
It may still be a better, more consistent approach to hire a full-time live-in: Home Support workers are in and out and not always the same ones. You get to like one and she moves on out of the agency! ...But the respite hours were what really gave me hope!
I truly hope you can pursue this and find some better support from Island Health. After all, if you financially and personally hit the wall: what happens? There's a crisis and your mom is "on the doorstep" of the Hospital with a note pinned to her shirt! Sorry - bad joke but there's a point in there. The Health Authorities don't want us home caregivers to go "over the cliff" - they know darn well we are holding it together for a lot of their clients!
Hi Victori, I can only say what I have experience of, which is a very frustrating time with this awful disease, over 10 years ago my husband was told he had MSA, his mobility got gradually worse, and his continence was unpredictable after about 6 years we were referred to a professor of neurology who explained that he had CBD, the main difference being elements of dementia show with CBD, also the denial element, where they think they can still do something because the brain is saying mixed messages for example at the time I was using a standing hoist, to get Ian up and out of chair/bed, but he would insist he could get upstairs to bed with me, something he hadn’t done for a while, i was also told the delays in answering questions is due to the brain again, it is as if I am speaking in French, and Ian doesn’t speak French, but is trying to work out what you’re asking him, then the reverse when he replies, it was a lightbulb moment for me, I could understand it better, now I try to put the question in simple form so instead of offering multiple choice, say, would you like.......
And yes/no or 👍 on bad days works
We moved into a bungalow 3 years ago, so Ian has the lounge for his room, with a ceiling hoist, we use his bed as a sofa when people call and chairs so he’s not left out
Glad you found this site, it is great, also the helpline is a good thing to have handy, so if you have a meltdown they can help talk you through it, they also have fact cards which are useful for your Dr and hospital appointments, I think they have produced a booklet now with useful tips
Do you have occupational therapist available to you
I have found them helpful, but we’re UK based
Good luck with it all and keep in touch
Janet xx
NB have you thought of Tena pants, you can throw away when soiled. Just an idea 🙂
PSP being a neurological disorder (like Dementia) apparently has has some dementia symptoms for some patients.
I find that my B do exhibit some “sun downing” symptoms at around 4-6pm, much like dementia patients. He gets agitated, restless, confuse and aggressive and no amount of talking sense to him will calm him down.
So what I do is just to let him stand up walk about and go where he wants to go and just follow him around to make sure he is safe, until his “sun downing” passes. It’s quite exhausting and relentless most days BUT it ceases after awhile. I found out that once my B is in that mood there is no point stopping him, it’s like getting in the way of a runaway bus, so best to let it run it’s course.
So, may I suggest that if your Mum wants to rant etc just let her do so and don’t take it personally as they can’t seem to control it!
Like the post by megAbrew, my mum is exactly the same she has had CBD for at least 4 years and presented dementia symptoms about 12 months ago. She gets agitated around 3 in the afternoon and will not settle for a number of hrs . Her cognition is deteriorating weekly and she starts talking then gets frustrated because what she wants to say will not come out it’s a horrible disease.... we use Tena lady pants they stop Mum pls I get folded tissue in her pants which were making her sore
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