Mums chin is now permanently on her chest and her eating is so difficult because of the position of her head and the fact she can barely open her mouth. She refused to have a PEG back in September and she still stands by this.
Her food is very soft so completely running out of ideas. Anyone else experienced this and if so what did you do xx
Hi Sarah
How distressing for your mum I don't have any answers for you I'm afraid. My mum when tired especially in her wheelchair flops her head downwards she was doing it today when we went out I just gently keep raising her chin. When we got home her head had really dropped and it was difficult to raise so I laid her right back in her recliner. I have been looking at head supports that can assist holding the head up .
Sorry I can't be more helpful but I will follow this post with interest.
If you Google neck solutions it shows what I have been looking at
Love Lynda xx
Can you try to feed her in a slightly tilted back position? Dad had the same issue and we moved his whole body in a tilt back wheelchair. Think of it as her mouth isn't positioned where feeding is easy, moving her head is difficult so move the whole body to reposition her mouth. Hope that makes sense.
Ron
Good thinking Ron will try and find a way of doing this xx
Hi,
This is exactly what I started to do with my husband and it worked!
If his head is down on his chest now, I just tilt back his wheelchair and his head stays up.
D x
We have a recliner chair with special wedges fitted in so Ian is supported more on his left side, which he tends to slide to, the chair was part funded by nhs and part OT, as they are very expensive, he has lost so much weight since this horrible situation has claimed us, he was 14 stone and now 8, we tried a syringe for feeding and the tommee tippee spoons are good as they are softer and you can use it to gently prize the mouth open, the help line once explained to me that someone with CBD or PSP has a problem digesting what we are saying, so it’s like we’re speaking French,but they don’t, so they’re trying to fathom what we’re saying, and it is so true, after a few minutes the comprehension is clear on his face.
Aston the peg, we have a very good nutritionist, who for months has been trying to convince Aidan to have one, with very good arguments for it, but he was adamant he didn’t want it, I suggested that if our gp was to talk to him, he might take more notice as he recognises their authority on the subject, lo and behold, he decided to go with it, as we explained it doesn’t mean he had to stop eating and drinking, we have had it for 1 month, and are now in a sort of routine, he is much more communicative and happier, also his fluids have gone up tenfold, so less chance of infection. The system we have is portable, so fits into a rucksack on the wheelchair if you go out, we haven’t tried it yet, as it’s early days, but from my perspective it’s taken a lot of pressure away, because I’m not stressing about getting food and drinks into him
Good luck with it , I know it’s hard and I assume you have your own family as well and juggle it all is exhausting
Keep in touch
Janet
Hi Sarah
It sounds miserable.
We have some of these issues.
Things you might try:
Get an OT to visit with a view to a head /neck support collar. They are not so comfortable for long period use.
Do you have a hospital bed, or a reclining chair? The OT might supply one. If your Mum were to be on the bed with the top end raised top support her head then the head would rest on a pillow and be supported. Or, if the chair was slightly reclined the head would be supported.
Also, you could get a SALT nurse to do an assessment on swallow and see what can be done food wise. It might be that she needs to move on to liquid foods.
I do hope this helps a little.
Best to you both.
Kevin
xx
PS - I've just seen Janet has done a great detailed post... I'll leave this here anyway.
Hi, Sarah1972,
My husband's head became resting down on his chest and he was like that for a long while, it was very difficult to feed him. I really thought that this was just part of the condition and that it would always be the case.
I started tippng his wheelchair seat back, as far as it would go, whilst supporting his head with a pillow and it helped, his head is much more upright now,most of the time actually,which makes it much easier to feed him.
I thought that he would be permanently hunched over, with his chin on his chest.
I must say that the wheelchair we have, makes it easy to put my husband in different positions. I am convinced that this helps.
Hope this helps
D x
Hello, Sarah.
My husband's posture sounds similar and has been this way for a year.
I don't know what he would do without his electric reclining chair (@ $ 1,500 US dollars), which is softly upholstered and reclines smoothly into a wide range of positions. He spends most of the day in it. This can help with a tilted position for eating and drinking. Straws are a necessity, of course, and I have gone to cooking soft casseroles which can be scooped up with a soup spoon or cutting simple sandwiches into quarters or eighths. Having said that, he is still struggling to keep his weight up. He was down to 118 pounds and the Veterans Medical Center here sent a dietician to the house to confer with us. I am doing things like adding whipped cream (not whipped) and an extra yolk to his scrambled eggs and making him a milkshake with Ensure Plus, ice cream and Hershey's syrup mid-day to boost his energy.
We have begun weekly visits to a physician who practices acupuncture and my husband has seen a small benefit to his (in)ability to rotate his neck, which is sitting on his chest, left to right so we are hoping for a modest improvement from the acupuncture. Physician has never treated anyone with CBD before but it trying to be creative.
It's hard, and hard to watch, as a loved one struggles with these problems.
Marilyn
Our local group members have used the "tilted back chair" trick and the neck collar route. Both have worked to some degree. You can consider botox injections as well.
Interestingly, anterocollis (head forward on the chest) is a common sign of multiple system atrophy. Has a neurologist considered that diagnosis?
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