Moaning noises

Hi my hubby has frontal temporal dementia and psp he has recently started making loud moaning noices when he breathes out and some time he seems to hold his breathe when making this noise it's quite scary we have to nudge him to stop it and he is very breathless afterwards,he has been poorly with a aspiration pneumonia a couple of months ago followed by a urine sepsis a month ago,he is on soft food and normal fluids,has anyone else experience these moaning episodes,he says he's not in pain,they happen day and night and I find I get very tired listening to it,we still sleep in the same room so I dnt get much sleep,he is going to st annes hospice for a assessment for day therapy one day a week which will be great for us both and I'm hoping he makes these noises whilst he's there to see what they say.thanks for reading Sandra xx

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  • Hi Shep

    Yes, my husband moans and groans a lot but we have never been told he has got frontal temporal dementia, mind you since his original diagnosis of PSP in 2010, we've never been told anything. Fortunately we sleep in separate rooms as he is in a hospital bed with sides, so at least I get some sleep. But I do think my husband has dementia I as well as PSP because of his aggressive behaviour, very much like his mother 20 years ago.

    You're very lucky to get him to an hospice, even for one day. My husband would not go to hospice and the Hometeam said there was nothing they could do for him, can't think what they're there for then.

    Regards

    Dorothy t

  • my husband sleeps downstairs but have taped a remote doorbell to the rail which he uses if he needs me I wouldn't rest as easily without him having it

  • Thanks for your reply, i am hopping the hospice except him we go a week on Friday for the initial assessment so fingers crossed,sorry to hear they couldn't help you and your husband,wonder why they couldn't help? were abouts do you live x

  • Lewisham in South East London, St Christopher's in Sydenham is our local hospice.

    Dorothy T

  • Hi Dorothy did you get the hospital been from your occupational therapist John has just got a grant a planning permission to have a bedroom and wet room exstention,it is getting hard for him to get on stairlift,I will be worried when I'm not next to him because of the dementia he doesn't realise he cnt get up alone,many thanks Sandra x

  • Hi Shep

    As your husband has already had aspiration pneumonia, I would ask for his fluids to be revised. I'm slightly baffled that his diet has been changed to soft foods but his liquids not thickened? My experience with Mum was liquids were thickened along with the various changes in textured diets.

    Warm Regards

    JoJo xx

  • Don't forget also that soft foods does not mean puree. I had a lot of trouble with the staff at Mum's care home over this. All it meant was not things like crisps, crumbly or crunchy foods that might be inhaled by accident. Mum could get stuck into sandwiches and fish and chips easily.

  • Hijo jo whilst my hubby was in hospital last time the salts team did a fibre optic camera swallow test and the sed his swallow was really strong nothing went the wrong way! So yes they upgraded him to normal fluids again?they ate going to monitor it Monty tho x

  • That's great you have that support Shep, Jackie from SALT was an absolute Godsend for us.

    Take care lovely xx

  • what is salt I have psp and would like to know

  • Hi mombcd1 salts are speech and language specialist,they are based at our local hospital but come to our home to keep checkon hubbys sswallowing to see if things have progressed any,our consultant reffered us to them x

  • While talking to our district nurse she mentioned the salt test I told her I had asked the GP a long time ago . That was 4 months ago , she got in touch with the GP the and when after two months heard nothing I soke to her again , she promised to speak to the GP again , I have no doubts that didn't so so .

    I rang athe dept that deals with home visits they had heared nothing . So this pm I rang the D Nurose agAin . I know now that she just spoken to the doctor and he had promised to refer him .. !!!!!'!!!!!!!!!,

  • Hi Shep, I was interested to read your post since my Dad has CBD and also frontal temporal dementia. He doesn't so much moan as shout - just continually shouts unless he is smoking (with help) or being fed. He also holds his breath and makes a strange noise - just as your poor husband does by the sounds of things. It's all very distressing and I do feel for you - especially as you are being so very brave in looking after him yourself. My Dad has been in a home for about 2 years now which does make life a lot easier for us - although we do, of course, feel terribly guilty about it. He is also on a soft food diet and his liquids haven't been thickened (yet - but I do think that this might be next). The home he is in has a SALT on site so we are lucky in that he is constantly assessed and reassessed. Just going back to the moaning though - I have been to a couple of 'support groups' for people with PSP/CBD and the moaning does seem to be a common symptom..... hope this helps in that at least you know you aren't alone..... take good care..... Piggy xxx

  • Hi Sandra,

    My dad was diagnosed with psp as well as frontal lobe dementia. He also continually moans and also is very breathless (despite his blood oxygen being high). He can't speak and is fed through the nose. We thought he was either in pain or very anxious. Do you know if your husband does it because he is anxious?

    It is very hard hearing someone moan all day, especially when you don't know what's wrong and how to help. My dad has been on strong pain killers n anti anxiety drugs- but still continues to do it.

    Ruth

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