Had a bad day

Hi. Mum was acting strangely today. She has in the past, had emotional outbursts - crying etc, which she was doing today. She asked me for a carrier bag (eventually, -had difficulty explaining what she wanted ), and then lifted up her top and was trying to tie it around her waist. When I asked what she was doing, she just started wailing. I am scared she is developing some kind of dementia. Is this normal with PSP?

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  • Hi Lindsey48

    it is difficult to say, my husband has had several what I call "dementia" episodes over the last 2 years, the "experts" say "confused" episodes, well don't we all as we get older.

    But it is difficult to handle, usually I let my husband do exactly what he wants (making sure he does not come to any harm) and he eventually calms down and we carry on as "normal", but it can be exhausting sometimes.

    Take care

    Dorothy thompson

  • hi lindsey48 like dorothy says its hard to say I expect your mum is frightened to and wondering what is happening to her try and see your dr or specialist and ask them about it I know ido silly things myself \\\\ but I put it down to older age\\\ it will put your mind at ease and then you can reassure your mum but maybe give her a bit more attention at this particular time

    hope this helps peter jones queenskland Australia psp sufferer

  • Hi Lindsey

    This situation with your mum must be very disturbing and concerning for you. Her symptoms of emotional outburst, as you know, are common to PSP sufferers (pseudobulbar affect). The type of dementia seen in PSP is quite different from that seen in Alzheimer's. It's mainly a slowness in processing words and thoughts and expression (called subcortical dementia), along with some mild cognitive dysfunction from damage to the frontal cortex. It should be noted that this cognitive dysfunction can start early in PSP but is one of the symptoms that usually progresses very slowly, and sometimes rarely changes throughout the course of the disease.

    Sadly, PSP has many overlaps with other conditions, and when we talk of dementia it is quite possible (not common for most sufferers) to have symptoms of associated diseases like FrontoTemporal Dementia (a type is called behaviour variant FTD and shows changes in personality and behaviour). There have been cases of Alzheimer's being a co-morbidity with PSP. Since many parts of the brain are eventually damaged it is very hard to say whether our loved one has other neurological conditions apart from PSP (even parts of the "emotional brain" called the limbic system, show some damage in PSP).

    We should remember that dementia is a group of symptoms caused by specific diseases. We should not expect old age to result in dementia!

    Your mum may simply have worsening emotional lability/incontinence (pseudobulbar affect). However, like many symptoms of PSP, they can wax and wane, and for periods of time will not be as intense.

    You probably know all this, so sorry if I'm stating the obvious! Since it's difficult sometimes for doctors and even neurologists to decipher all the symptoms of PSP/CBD etc , it is so confronting to have these experiences with our loved ones on an ongoing basis, knowing that there is little we can do, even with medications.

    As others have said, it will be very frightening for your mum, so just trying to comfort our loved ones and keep them as pain free as possible is the main goal.

    Take care as a carer!

    T.

  • hi strelley hows it going ok I hope & your wife gee im glad

    were on the same channel mate peter jones Q.L.D

    AUSTRALIA.

  • Hi Peter

    Thanks for your interest - my wife has become measurably slower (movement, eating and thinking) after spending a week in a nursing home while I had respite. Apart from that we continue to manage. We look for ways to keep her comfortable and manage her neck pain and attempt to maintain general good health as long as possible.

    All the best from "hot" Perth!

    T.

  • Strelley, Is it possible you, in respite, may have forgotten a bit the level she was at? Just a thought. Being away and returning makes a quick reminder mate. Hang tough and keep posting those great responses!

    Jimbo

  • Hi Jimbo

    Thanks for your thoughts on this matter.

    As you know, it is the carer who sees those subtle changes over the days and weeks. In my wife's case, even the physiotherapist noted she was slower and had more movement difficulties after her stay in the nursing home. We thought we would give her more time "to recover" with our daily routines back in action (including her usual exercises). She has not shown any improvement yet, but it may come in the next couple of weeks (but the physiotherapist doesn't think so).

    Hope you are keeping as well as possible as you care for your wife.

    Take care.

    T.

  • Yes, fatigue, worry, etc. can nock the props out from under our wives I'm sure. Let's hope that's all it is and she will be back to her normal soon.

    Jimbo

  • hi strelley do you think it was the nursing home that slowed your wife down mate because they would operate a bit differently from you at home \\\\ I still have that pleasure to come at the moment I am still holding my own apart from the falls and swallowing and a few other bits and pieces\ but i am sure your wife will pick up again now she is home with you mate you will see

    her improve again im sure of it \\ and bedside that you need a some respite to re fuel yourself again

    well mr S I will say goodn9ght to you and mrs s take care mate peter jones Q.L.D. PSP merchant

  • Hi peter I still continue to read all the posts my husband passed away 12th September 2013 I still think of everyone that is suffering this disease and there carers I cared for my husband for2 and half years during this time I have always admired your courage honesty and confidence hope you are keeping as well as you can be take care

  • hi larches i am very sorry that your husband passed away mate you had a long struggle with him but im sure he woiuld say she was the best \\\\ its always hard when someone passes on

    isn't it we lost a grandson at 7 years old well 2 weeks before hes seventh

    birthday I still feel it now but it has softened a bit and it seems like a lifetime so they say time is a great healer but its just waiting for the time to go \\\\\ well larches thank you fir your kind words

    mate hang in there

    my friend take care peter jones queensland Australia psp sufferer

  • Hi Peter

    There were certain things at the nursing home that were sub-standard (I think my standards may be too high). Our Geriatrician said that this particular chain of nursing homes would be "as good as you get", nevertheless, he noted, the care would not be the same as one on one at home!

    My wife reluctantly mentioned on arriving home that there were 3 near misses with respect to falls, and my daughter who visited daily mentioned a few other things that were not acceptable.

    I am suspicious that this stay in the nursing home (with these events and the fact that despite of "social activities", she had little personal social interaction) was in fact the reason for her "slow down".

    You try and take care of yourself - especially since you are still moving around in such a way that you have falls! What things are you doing TO PREVENT THESE FALLS?????

    Cheers mate

    T.

  • hi strrelley thanks for your em mate I think your standards would have been to high mate and do not forget you were were I on I \\ I think the nursing homes would be a bit impersonal myself and time must be a great factor as well whereas you could spend more time with your wife if things were not going right they have to move onto another patient its a shame it has to be like this but im afraid thats called progress but at the same time its good that we have these places around so you can have a bit of time to yourselves which I think you need very badly\ as I say I have not been in yet but I can imagine anyway good luck im sure your wife will respond now she is back home with you mate all the best to you and your wife mate peter jones just a quick one about my falls i still go to balance group and they have been very good at showing me what to do and become aware of things and think about them before i actually do them but I find that I am thinking about falling thinking about my swallowing and thinking about my speech which all seems a bit much for me to handle then I have excercises at home

    I have an EMST blow through thing from America which helps with your breathing and it is supposed to help you get stronger for getting anything stuck in your throat which it does do\\\ I go on that 4 times a day and another one for breathing is getting 3 balls up in the air in another contraption it all takes time but worth

    it im sure\\\\\ I have no more time left now to tell you about what I am doing about the falls except I am more aware of them bit I have to think a lot more see ya mate have fun in the sun in hot perth peterjones QLD AUSTRALIA PSP SUFFERER

    =

  • Yes. You are very knowledgeable. Frontal Cortex impairment, Frontotemporal Dementia, a combined group of neurological disorders, etc. - you are so correct: DEMENTIA IS NOT TO BE BLAMED ON OLD AGE!!

  • I appreciate your input on this issue. You obviously have studied and understand the issues. Please continue to post as your explanations are very clear. Thank-you!

  • Thanks everyone x

  • Dear Lindsey48,

    I recall accompanying my husband to the doctors and questions were asked back and forth to gauge where things were at, like how did the week or month go, has all been Ok? I never really knew how to answer objectively for any moment on any given day were each so different. I imagine that's how you and your Mum are also feeling? Like a single yogo pulled by dozen strings?

    Emotionally and mentally what is normal with PSP? - It's largely unknown - I think if 10 years ago, I'd heard someone speak of the unusual behaviours that I've encountered - my reaction would have been 'Are you for real.. Not possible - who you kiddin'? - Now having learned a little more of PSP - my reaction when I read the details of what you are going through is "Not surprised - I hope you can handle what's happpening and get all the support you can - the human brain is complex, For some with PSP, have characteristics and symptoms that cross over so many other illnesses, and others display symptoms isolated to PSP only" - Yes - it is all very confusing..."

    Regards,

    Alana - Western Australia

  • Sharon, all so true-sadly. A term I heard at a PSP conference, "the new normal", seems to fit. My mother had a stroke and watching her sucumb to vascular dementia was difficult but what is going on now with my fiance is so much worse.

  • Thanks for your replies. I'm going to get a urine sample sent off just to rule out infection. Dad rang me last night saying that mum was trying to wrap herself up in clingfilm and bags. She said the doctor told her to do it!

  • Try not to panic. My mum had a strange day like this and couldn't tell me she was going to get her hairbrush when a social worker had come to the door. I thought she was trying to get the door but it was open so told mum "It's ok; the door is open!" and mum made a terrible noise like a toddler having a tantrum whilst simultaneously slapping me. It was not hard but it seemed to go on for ages and like you I worried that we were going down the dementia path. It never happened again . This was before diagnosis of psp and I think mum was also panicking that she was losing control of her life. I spent time reassuring her that she was not alone and did not have to do anything she didn't want to. I told her we were in this together and I would always be there for her. It seemed to help. Tomorrow is a new day . That was my philosophy. Xx

  • Sorry to hear about your bad day. Yes it is part of PSP. I will pray for you. I cant believe there is nothing we can do for the PSP. EX hope.

  • my husband has had these sort s of episodes also struggles for the right word . I have learned to guess what he means and we laugh it off together I read somewhere that in dementia it's like opening a book and the pages are blank but in Parkinson's the words are all over the place not in order

    It is frustrating and confusing for both parties

    It's the spacial awareness as well can manage things a short distance from him but not when closer to him . I even place his dinner plate so that he stretches a little

  • I FOUND YOUR SITE AND FELT LESS ALONE AWAITING SECOND OPINION.YOU CANNOT SECOND GUESS WHAT HAPPENS NEXT IN MY HUSBAND,S CASE HE IS 64 AND TOLD PARKINSON,S 7 YRS AGO.WE HAVE BEEN LOANED A FULL BODY HOIST AND COMMODE CHAIR ON WHEELS.MOBILITY IS VERY POOR WHEN TIRED WHICH THESE PAST 3MONTHS IS MOST OF THE TIME.NOW TO THE REASON I REPLY ,MY HUSBAND WAILES MOANS SHOUTS WHEN PUTTING HIS FEET TO THE FLOOR HIS WHEELS ARE LOCKED HIS BRAKES ARE ON ALL BECAUSE I HAVE TALKED THROUGH THE SAFETY ASPECTS AS IV,E WORKED IN DEMENTIA CARE AND AT PRESENT MY HUSBANDS ONLY CARERS ARE MYSELF AND DAUGHTER.SO IN JUST A WEEK HE HAS CONFUSED HIS LIMBS WITH WHEELS.WE HAD SIX WEEKS RESPITE CARE OFFERED IN A REABILITATION UNIT OF GREAT USE TO SOMEONE THAT HAS HAD A STROKE.TOTALLY DESKILLED MY POOR HUSBAND BY NOT ALLOWING HIM TO CONTINUE TO SHOWER HIMSELF SIT ABOUT UN OCCUPIED AND BE SO UNAWERE OF PSP AND THE EVERY TASK BEING SLOW BUT STILL DOABLE IF GIVEN TIME..I TELL ANYONE WHO WILL LISTEN ABOUT PSP.TAKE HEART MY HUSBAND IS NOW ON WHEELS AND THIS HAS COME ABOUT IN SEVEN DAYS ALL BECAUSE MY DAUGHTER AND I HAVE TO SAFEGUARD OUR BACKS.LOTS OF MORNI NGS I FIND HIM WITH RIPPED NIGHT WEAR ALTHOUGH I HAVE ATTENDED HIM MAYBE 3 TIMES IN THE NIGHT.SO WE CANNOT GUESS WHAT SCAREY THOUGHTS PASS BY EVEN IN SLEEP BUT THE IDEAS AND ACTIONS ARE SO RIGHT TO THEM OH BOY DO WE HAVE TO BE A SAINT SOMETIMES??/////

  • Linsey, we are going through the same thing over here. Maybe you should ask for a psychiatric referral. There is a drug called Nudextra which is supposed to help with the symptoms you are discussing. And Strelly, no most people don't "know all of this", so it is important for us all to keep each other informed. Than You!

  • Hi, yes it is normal, my husband is very lost and confused at times, that he doesn't know the difference between yes and no, thumbs up or down.. at times he understands normal, at times he even sees things, he points at the ceiling or the wall, last week he even saw a big cat in the house,I DONT have a cat, but he made me understand, I had to look under the bed and around the room.. I just take every day as it comes, not very easy thouh.

  • how do I get a question on the first box? sometimes it seems by the answers that the people have been talking fot a long time.

    barbara daughtry

    mombcd1@yahoo.com

  • hi Barbara, if you would like to ask a question, at the top of the page, click on questions, then click on ask a question. if you mean you would like to respond to the original question, your answer is posted in the order it was received. There are lots of side comments regarding other peoples answers. It's like a large group conversation, everybody gets their two bits worth in. Hope that answered your question.:)

    joan

  • This is a tough one to figure out. I'm reminded of Mrs. Edmundson who thought her husband had one disease (CBD or PSP) only to find at autopsy it was the other. So many of these diseases are similar and in some cases overlap it's impossible to tell. Just roll with whatever the day brings, tomorrow will be totally different (thank God).

    Jimbo

  • My husband too, has this type of confusion/processing symptoms. He can be going along just fine and then can't understand I thing I'm saying. or he forgets how to use the computer that he had just been using. This morning when I was telling him goodbye as I was going to work, he was surprised that I even worked. Couldn't figure it out at all. after about an hour, everything was fine. This happens a lot, also trying to find the right words to say, or put thoughts together. It makes it very hard for him to socialize, he's always afraid he won't be able to keep up with conversations. We tried a couple of medications, but the side effects were bothersome and we couldn't tell a difference. He would prefer not to take any medications anyway. We just deal the best we can. Strelley is right, it isn't like the dementia in Alzheimer's, much different thankfully. My husband eventually comes back to what we also call his new normal. This and the balance has been the most disturbing and frustrating for my husband. My husband is only 55.

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