I intended to make a brief mention about my wife's noise making, but I've expanded it somewhat.
The official list of symptoms for PSP (and associated conditions) found in medical information, is often of a technical or general nature. Even when there is good detail about such things as swallowing difficulties or continence problems, there are still many missing elements of those symptoms that carers find in their loved ones with PSP. One of these is "moaning".
This forum has already shared on the subject of the moaning, groaning, growling or humming (plus other descriptions of unusual sounds). Nevertheless, it might be useful to revisit it in case those new to this site may not be alarmed at this activity, should it occur down the track.
Very little has been officially documented on this subject, and those who have written the occasional study have suggested that unusual noises from PSP sufferer's may be similar to noises and babbling made in dementia patients (Alzheimer's in particular). The mechanism is elusive, even to neurologists and speech therapists, but probably is associated with damage to the brain in PSP (interruption of the fronto-corticobasal circuitry).
It has been suggested that the "noises" in PSP are due to throat clearing, complaining (perhaps of pain), a comforting mechanism, trying to stay in a conversation, and so on. Additionally, side effects from some medications can lead to hallucinations and noises (even screaming).
It should be noted that most evidence points away from these noises being associated with pain. However, a carer would need to make sure that pain is not an issue. Even if the loved one cannot speak anymore (just making noises), every effort should be made to assess any problems of pain. Perhaps long before our loved one stops speaking (and this will not occur in everyone), we set up some type of communication system with them (remembering they will almost invariably be aware of their surroundings and what you are saying to them).
My wife hums a lot (and occasionally groans). Strangely, I had never asked her until recently why she "hummed". After a short period of silence, she said slowly "Because it's comforting". I found that answer "comforting" to myself.
I know when "groaning/moaning" occurs all night, it can be "discomforting" to the carer.
I wonder what may be the experience of others on this forum?
My husband moans and growls and coughs and chokes all the time along with so many more "symptoms" of PSP. He frequently goes into what I call dementia mode, others refer to it as being confused, this mainly consists of him refusing to stay in bed and insisting on sleeping in the living room, whatever the time of day or night it is, he has no concept of time, or standing naked in front of the patio doors for hours in the early hours, refusing to be helped, or kicking, punching me or generally threatening me with physical violence whenever I go near him.
No one in "authority" seems to take any of this seriously, I am just told to get more carers
in but they are never there in the early hours when these episodes occur, it is only always me on my own. Or I am told, call the paramedics when he falls and I cannot get him up but I fear for him if he has to go into hospital as no one understands PSP and my friends husband with the same complaint was treated shamefully in hospital last year.
I read such lovely blogs on this site about other peoples experiences and I just think that I have got the short straw because I cannot relate to any of them. Rightly or wrongly my husband treats me badly, he tells me I am stupid, careless, too rough, abuses me and I am at the end of my tether. He is not like this with the carers. I have requested an assessment for NHS continuing funding as I want my husband to go into care. He has had PSP since 2006 but was only diagnosed in 2010 and I am sorry if this sounds cruel but I for one cannot wait until it is all over.
I have had to put both my parents into care homes, firstly my dad who fell down the stairs and acquired a brain injury, some months later my mum was diagnosed with PSP, she managed to take care of dad for the first 18 months after his initial fall, then dementia became a problem with dad along with balancing, swallowing problems and speech. My mum felt dreadfully guilty but together by then they were both falling regularly. After the first year of dad being in a residential home, due to choking issues he had to be moved to a nursing home. I too live in the UK and CHC had only just come out, the social worker was excellent along with a community nurse doing the CHC Assessment and it was granted at the next board meeting, in Wales the local social services have these meetings once a week.
From what you have described of your husbands health, I think you are doing the right thing for your husband and yourself and I can see absolutely no reason why he shouldn't qualify for CHC, he appears to be ticking all the boxes.
Please get in touch with your social worker ASAP, explaining you are unable to cope any longer as things are and in the meantime ask for respite for yourself while the paperwork is being handled. You've done a bloody marvellous job in caring for a difficult patient, but you have to think what's best for you too. I have just received the PSP carers info pack free from the PSP Association. Ask them to send you one so that the carers and nursing staff where your husband goes to have a huge amount of information about the condition. I received the binder within 2 days of requesting it.
My heart goes out to you my lovely, I know it's hard to make this decision, I've done it twice when mum was not safe to live by herself any longer even with carers going in. Mum would fall every day in between their visits.
Please feel free to message me privately if you'd like to chat or have any questions about respite, CHC etc.
You have mentioned your abusive husband before. I am surprised that his behaviour has not improved towards you. He obviously knows what he is doing as he treats the careers with respect. I agree with jojo, you need respite whilst waiting for his move to a home. I takeoff my hat to you, not many would/could have coped with this situation. All the best for the future, hopefully all will turn out well. Take care, maddy
It must be absolutely shattering for you to deal with your husband in the state you have described. It does not sound cruel for you to want it all to be over! You should not have to deal with this situation, and your husband should be in suitable care. I'm not familiar with UK services, but it looks like others are advising you.
I am guessing your husband may have FrontoTemporal Dementia - FTD (that can often have other symptoms like PSP). While PSP can cause some irritability and aggression, FTD often shows those symptoms you describe. Some sufferers are found to have some elements of both PSP and FTD.
Perhaps you could check on this with his neurologist. The fact that he is not aggressive to his carers is one of those mysteries of this disease, and I know of others who care for loved ones who are only aggressive towards their spouse and not to outsiders.
I can only wish the best, and hope you can find the help you need without it being a financial burden.
My heart goes out to you, Dorothy. What a wretched predicament. Your compassion for your husband still shines through since you fear the kind of treatment he'd get in the hospital. I think you're stronger than I am and I admire you greatly.
Frankly, if I knew that my husband knew what he was doing and that he treated other caregivers decently, I'd be livid at his treatment of me and probably end up loathing him. Yes, that's harsh, but good grief...if there's an explanation like Strelley suggested, that he suffers from some sort of dementia in addition to PSP, that's different. It wouldn't make day-to-day living any easier, but I'd learn not to take it personally, and try, try, try to remember the way he was when he openly loved you.
In this country (USA), your husband would be considered a threat to himself or others and would qualify for commitment. Now, I'm not suggesting that, but I wish your neurologist would push for a more expansive diagnosis, to include other diseases or syndromes that may be affecting your husband, and, if appropriate, refer him to some other specialists.
God bless you, darlin', and I pray you get some relief soon.
Hi Dorothy, Have you thought about hospice intervention? I first read about it here one evening and the next day visited our local hospice and asked them how I go about getting help. They told me to go to the GP for a referral. I managed to get an appointment that afternoon and 3 days later the hospice contacted me. We were visited and told what sort of things are available. The following week my husband started going to the day centre for 5 hours once a week. I don't do "work" at this time but meet with friends or go out on my own if no one else is free. The hospice have since given me a couple of hours on a Sunday afternoon, 5 night sits, and with 2 hours notice he was invited to stay for 4 nights, increased to 5 as the staff said they didn't know how I coped as they were finding it difficult with his night time wanderings (I did warn them about his lack of modesty}. The hospice have contacted social services for me and mentioned continuing funding to them. Someone is coming to assess him this week. I find things difficult but my husband is the most placid "gentleman" you are likely to meet. I'm not surprised you feel as you do if you are coping with violence as well. I do hope you get the help you need very soon.
Yes I have even gone down the hospice route only to be told that there was nothing they could do to help as he was not at the "end of life" stage and they did not think he would be eligible for a Home Team visit. All in all since my husband's diagnosis back in 2010, the medical profession have lived up to the statement by the neurologist, that is "there is nothing more the NHS can do for you , go home and learn how manage the symptoms". I am paraphrasing but that was pretty much it and that's what we've been doing reasonably ok until about a year ago when things started to go downhill very quickly.
Now I wake up each morning and wonder what the day is going to bring.
But I'm sure that A lot of us feel like this, so I don't really think I'm so very different
It is not clear from your posting whether you have been in touch with PSPA for help and guidance regarding you husbands behavioural issues and NHS Continuing Heathcare funding. I am sure that the Specialist Care Advisors could offer you a lot of help, guidance and support in tackling BOTH these issues.
They are employed by PSPA to help members with such complex problems as yours so please please use them.
Behavioural issues are one of the factors considered in a CHC assesment.
Dorothy it is a natural feeling. It does not sound cruel, far from it. Don't beat yourself up for what are normal feelings. I was getting the same things creeping in with mum where she would play me up and be angry and refuse to do things or deliberately do things I asked her not to but mum was sweet as pie to others, especially my prodigal sister! When mum went in to care I still spent a lot of time with her, more than most would do in care homes I know, but I could walk away when she was like it and know she would still get things done for her. It has its own issues but care does help you get back your relationship more-not fully -but better than it is now. It does get to a point when you know it's not forever and you accept that it is definitely going to end. You never know when until it gets to the end stage and even then you are so wrapped up in it all you don't realise how close they are. When mum passed I was just empty and relieved whereas my sister went through anger and guilt. I know what I prefer and I know I did my very best. You have to safeguard your own sanity to be able to support them and do whatever is necessary to make sure you are not on the scrapheap yourself.You may not realise that your own health is breaking. Even though I felt calm after mum passed my usually normal BP was sky high for a further 4 months! Thinking of you.
Thank you Jo-Jo and Maddy for your love and support. It's not that I am reluctant to my husband going into care, even for respite as it would be productive for both of us, its just the prohibitive costs. My social worker tells me that she has in fact started the initial assessment with the appropriate authority but she has also said that she did not think my husband would qualify because she did not think he would meet the criteria. His assets are above the threshold but I have no access to them. We would have to pay and a good quality nursing home is nearly a £1000 a week. Do either of you, or any one else come to that, know of another way of getting some sort of funding without having to re-mortgage our home?
Hi Dorothy, having suffered similar incidents with my husband earlier in the progression of his illness, we have largely managed to overcome it since he started going to day care at a hospice and realized that I didn't HAVE to do what I was doing for him, and the consequences if I stopped! And I realized I didn't HAVE to be his slave. Respite is marvelous for reminding him how well off he is at home! But seriously, if nothing is working to make things better, when the next episode of abuse begins you need to dial 999 and tell the operator you are being attacked - if your husband is "sectioned" under the mental health act his stay in a nursing home is fully funded by the government! I know because this happened to my mother - all her life a timid and placid woman - she attacked my step-father with her zimmer frame! We were able to choose a nursing home for her from the approved list, and care could't have been better.
I am thinking of you and hoping you can be strong, Ann
CHC is NOT accessed financially as would a residential or nursing home is. There is no charge at all regardless of financial thresholds. Again knowing how my dad was and what you describe, I can't imagine on what grounds they could refuse your application. As someone else said, answer questions on the worst day you can remember. Also ask for a different social worker for a second opinion ( some can be very fly by night) also I would also ask for a Psychiatric nurse to come out and evaluate your husbands behaviour explaining in minute detail the abuse you are going through. This can be done through your social worker or Gp. I would also visit your own GP for yourself, tell him what you are going through and you are at the end of your tether. His report along with that of CPN (Community Psychiatric Nurse) can be attached to the CHC app.
Sending you lots of love and strength, so that your voice will be heard, do not let system beat you my lovely. Time to take off the poker face and show others the cracks that we all are so careful to hide xxxxx
It is a heart breaking situation you are in, for which I do hope you find solution then spread the word...
I can relate to almost each aspect that you talk about. The one exception is the moaning & groaning -it happens, but not too often.
I have now been placed in a crazy situation of being forced to sell our home for my husband to go into care, and am trying to do all to prevent the home sale, but truly am playing 'blind' as I have not found anyone that gone down this road before me. So how am I handling the situation - well one disorientated step at a time. It has all put me in a rather strange frame of mind - for now I've come to realise I may well lose the family home (our only asset), and I will financially have to start life all over again, yes I recognise it will be a long painful haul! But at the same time I am relieved as this journey of PSP has made me so exhausted for way too long. At this moment all I seem to desire is the return of some energy for self preservation and a want to enjoy the company of others. Yes - it is a cruel disease we are part of!
Thank you all again for your support. Alana, I think here in the UK I would not have to sell our home as this is where I would have to live and here in the UK the financial assessment is made on m husbands assests only not our joint assests.
Thanks for the informative post about groaning, unusual noises, etc. I've read about that symptom on some other sites and did know that it doesn't necessarily signify pain - thank heavens. Your wife's response to you would have indeed been comforting to me were I to find myself in that same boat. At the same time, if the noises occur at night, I think I'd invest in a comfortable set of ear plugs/phones. No matter how much you love her, you need your rest.
My husband moans and sings. He doesn't seem in pain and confirms this. He says it helps him clear his throat. He sometimes holds his breath which frightened the doctor when she arrived to check for chest infection. He confirmed he did it to stop coughing. I think PSP victims try to find different ways of coping with the swallowing and coughing problems and in our case he thinks it helps.
i think they call it involountary talking\\\ not moaning mate i also hold my breath when i am washing up the dishes or putting a screw in for somethiing
when i told my first nuerologist that i held my breath when i done things he said to me WHAT DO YOU DO THAT FOR I SAID TO HIM I WAS HOPEING THAT YOU WERE GOING TO TELL ME NO MORE WAS EVER MENTIONED ABOUT ME HOLDING MY BREATH IN FACT YOU ARE THE FIRST PERSON THAT I HAVE ACTUALLY KNOWN WITH PSP THAT DOES IT \\\ I HAVE NEVER ASK ANYONE ON THIS SITE IF THEY HAVE HAD EVER HAD IT HAPPEN TO THEM I THOUGHT THAT PERHAPS I WAS ODD AFTER THE NUERO SAYING THAT TO ME ]]]]\\\ ITS NOT JUST A ONE OFF THING IT IS CONSTANT UNTIL MY WIFE SAYS TO ME FOR GOODNESS SAKE BREATH WILL YOU THEN ALL THE AIR THAT I HAVE TAKEN IN SEEMS TO EXPLODE OUT THEN I CARRY ON AS NORMAL AGAIN UNTIL I HOLD MY BREATH AGAIN i am really glad that you have mentioned that mate i know i am not alone with that THANKS take care best wishes to your husband peter jones queensland australia psp sufferer
Good to read your entries again. Haven't seen them for a while. Do you find that holding your breath helps you in any way or do you do it for a specific reason? My husband also makes throat noises, he says he is singing. Look after yourself. D.
HI DENMOB WELL MATE FIRST OF ALL I HAVE BEEN ON HOLIDAY TO THE NORTH OF QUEENSLAND BY TRAIN NOW THAT IS GOOD FOR YOUR BALANCE I CAN TELL YOU THAT FIRST HAND THE ISLE THAT LEADS TO THE TOILETS AND BUFFET CAR IS NOT WIDE ENOUGH FOR MY WALKER TO GO DOWN BUT ITS A GOOD JOB THAT I TOOK MY WALKING STICK \\\ THATS WHY I HAVE NOT WRITTEN ANYTHING FOR A WHILE MATE NOW THE NEXT THING IS I FIND THAT HOLDING MY BREATH IS A SHEER WASTE OF TIME BUT I CANNOT HELP IT ==== ITS LIKE YOUR FEET FREESING UP ON YOU AND ITS BAD FOR MY HEALTH BECAUSE I HOLD ONTO MY BREATH UNTIL THE LAST MOMENT RIGHT UNTIL IM READY TO BURST OR IT SEEMS LIKE IT \\ BUT OTHERWISE IM OK NO WHINGING MATE MY THROAT DOES MAKE INVOLOUNTARY NOISES MATE BUT IM NOT SINGING
IF I HAD BEEN I WOULD HAVE BEEN BOOED OFF THE STAGE \\\ WELL MRS DENMOB SAY HI TO YOUR HUSBAND FOR ME WISH HIM ALL THE BEST AND KEEP ON KEEPING ON BUT TRY AND LET THE SINGING COME THROUGH THE RIGHT CHANNELS BEST WISHES PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER
HI DENMOB WELL MATE FIRST OF ALL I HAVE BEEN ON HOLIDAY TO THE NORTH OF QUEENSLAND BY TRAIN NOW THAT IS GOOD FOR YOUR BALANCE I CAN TELL YOU THAT FIRST HAND THE ISLE THAT LEADS TO THE TOILETS AND BUFFET CAR IS NOT WIDE ENOUGH FOR MY WALKER TO GO DOWN BUT ITS A GOOD JOB THAT I TOOK MY WALKING STICK \\\ THATS WHY I HAVE NOT WRITTEN ANYTHING FOR A WHILE MATE NOW THE NEXT THING IS I FIND THAT HOLDING MY BREATH IS A SHEER WASTE OF TIME BUT I CANNOT HELP IT ==== ITS LIKE YOUR FEET FREESING UP ON YOU AND ITS BAD FOR MY HEALTH BECAUSE I HOLD ONTO MY BREATH UNTIL THE LAST MOMENT RIGHT UNTIL IM READY TO BURST OR IT SEEMS LIKE IT \\ BUT OTHERWISE IM OK NO WHINGING MATE MY THROAT DOES MAKE INVOLOUNTARY NOISES MATE BUT IM NOT SINGING
IF I HAD BEEN I WOULD HAVE BEEN BOOED OFF THE STAGE \\\ WELL MRS DENMOB SAY HI TO YOUR HUSBAND FOR ME WISH HIM ALL THE BEST AND KEEP ON KEEPING ON BUT TRY AND LET THE SINGING COME THROUGH THE RIGHT CHANNELS BEST WISHES PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER
Peter, Mate, what are you feeling or thinking when you hold your breath? Glad you can come up for air. Perhaps you are training to be a pearl diver? lol
hi jim hows it going \\ well jim in answer to your question \\ im thinking i had better hurry up and breath or i shall kick the bucket soon if i=dont i do not know why i do it i wish i did the trouble is nobody seems to know either maybe anxiety or something and its funny you saying about being a pearl diver
but i was a deep sea diver back in england when i was 22 years old
but i had to stop,it because i got stuck in the mud down by the lock gates that i was inspecting at the time and i lost my nerve =[=not quite the way i am losing them with psp but i lost it anyway but i like your humour my friend keep it up we have to laugh at ourselves and a good laugh is worth a thousand pills i think anyway \\\ well jim thanks for your reply
mate i have done many things in my lifetime and i am glad i did now and did not wait until i retired that would have really have been terrible\\ by trade i am a solid plasterer you name it ive done it and had a good time doing it and all well most things anyway =take care jim regards to sharon tell her not to give in stick weith it mate peter jones queensland australia psp sufferer
hi jill how are you going mate well jill i would say to you just keep going as you are doing now\ like you have always done ]] but dont worry about psp to much i reckon the more you worry about things the worse it gets in yourself and its no good worrying over something that you cant control anyway, is it]]
i have quite a few things wrong with me but life goes on and if i worried to much i think its a waste of energy i have a get well card in my magic room it says ONE DAY AT A TIME NOW I WANT YOU TO PROMISE ME THAT YOU WILL NOT GO DOWN THIS ROAD OF OVERLY WORRYING ABOUT WHAT COULD HAPPEN TO YOU OR ANY OF US JUST LIVE LIFE TO THE FULL MATE\\ PLEASE ENJOY IT\\ BECAUSE ITS A WASTE IF YOU DON'T \\\ SO BE HAPPY MY FRIEND AND GET YOUR SENSE OF HUMOUR BACK ON TRACK SO MY FRIEND I WILL SAY GOODNIGHT TO YOU BY THE WAY I THINK YOU HAVE GIVEN THE OLD DYSLEXIA THE FLICK MATE I NEARLY DID NOT RECOGNISE YOUR TYPING IT LOOKED SO GOOD\\\\\\\ COMPLIMENT \\ SEE YER PETER JONES QUEENSLAND AUSTRALIIA PSP SUFFERER
Peter, did you fabricate those very detailed plaster ceiling borders? I know how being stuck in mud can create fear. Once years ago I was duck hunting with a friend. He got out of the boat to adjust a decoy and got stuck in the muck. We were way out in the marsh and I thought we'd be spending the night there. Fortunately he eventually worked loose, thank God. A real scare. Sorry, not on topic but just had to send it along. Forgive me.
MJ moaned more often in the evening when she went to bed. Often it would be so loud that you could hear her from any area of the house. We often gave her clonazepam to help her drift off to sleep. During the day she moaned while sitting in her lift chair. After a month of listening to the moan, primarily when she was being read to, we figured out that she moaned during that time if the book that was being read was not something she was interested in listening to. On the occasions that she moaned softly I believe it was self soothing for her. When Hospice visited they felt that moaning was indicative of pain. It would be good for caregivers to determine some system to identify moaning and what it's intent is. MJ was not able to verbally communicate, however she had an exercise ball in her R hand that she was able to squeeze for yes or no.
So many important points have been raised in this particular blog. My husband has been moaning for about a year now. We were at a PSP family meeting last Autumn, and one of the other PSP sufferers moaned through the whole event. My husband said to me afterwards "I hope that doesn't happen to me". He was unaware that he too had started moaning, but only on a few occasions. Since then it has become far more frequent and I have noticed it is in particular late at night, so I think tiredness is a factor. When he is watching anything funny or sad on television he has amazing outbursts of laughing and crying. The laughing is fine, but the crying is like a Banshi. But certainly tiredness and sometimes pain are factors in the moaning. Peter says he can't stop the moaning so we have taken to saying "its PSP having a say"! We find that such strategies help to manage everyday life.
We know my husband has degree of frontal lobe dementia and this affects his decision making.
Dorothy, I'm so sorry to hear you are continuing to have such a difficult time with your husband. Do try and get CHC. When the initial assessment is being done, remember to answer the questions for the very worst day, not when your husband is having a better or average day. Another factor with PSP sufferers is the unpredictability of their behaviour. It is because of this and the impulsivity associated with PSP that makes the caring so difficult. No one knows what is going to happen next. Peter has had an initial assessment for CHC 6 weeks ago, we are still waiting to hear the outcome!
Hi, We haven't come to the "odd" noises point yet and maybe won't. Thanks for the information on it so I know what to expect if and when my dear wife starts it.
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