My 78 year old mom has started to wail, several times a day - she has lost her speech, so i imagine the wailing is an expression of frustration as well as the only way she can make herself heard. We are at a loss as to how to help her when she reaches this desperate state. An example of where we are failing: She struggles with stopping doing something she is in the middle of, like eating, even though she is actively choking. Taking her food away is the only way to get her to stop putting food in her mouth. This leads to her wailing, which only makes us more worried about her choking on the food she still has in her mouth. Explaining we are not taking her food away forever falls on deaf ears. She continues to scream. It is amazing the volume she produces while wailing considering she can no longer produce words.
She is entirely entitled to feel this despair. The losses she is enduring are many and brutal. We wish there was something we could do to help her through it better than we are right now, which isn't saying much.
Any guidance is hugely appreciated.
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LARWLSN
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My Mum started wailing as well, she was also unable to talk. However your Mum is aware and is doing so to express her feelings in the only way she can. My Mum was wailing when her eyes would be closed. It is incredibly difficult to watch a loved one wail like this, feeling totally powerless. The only advice I can give is continue to console her and explain what you are doing. We would talk to Mum constantly in the hope that something would get through to her and she would stop. Mum would also continue eating and now looking back trying to get up and walk when she was going to fall. They are not being stubborn or difficult, they simply do not connect that it is dangerous for them.
We cannot even begin to comprehend what they are going through. Patience in these times is very difficult, because we too are in despair at watching what PSP does. Just be there and console her, sorry I couldn't be of more helpful.
Very sorry to hear about your mum. My wife is also in a similar situation. She is in the advanced stage of Progressive Supranuclear Palsy and have lost her voice and have problem in taking food through mouth . Our neurologist has suggested a PEG tube insertion for direct feeding to stomach. The procedure was done and she is being fed through the tube. We are trying to feed her a little through mouth at least to have a feeling of taking food. But she coughs soon due to choking. She also makes peculiar sounds like wailing for food, dry throat, to pee etc , but at times we cant understand what she means. I have a home nurse attending to her who is very considerate but we are at times helpless.
I think it’s completely understandable as you say the frustration and loss of faculties and given eating and drinking are one of the essential components of life and the human body and mind create a lifelong relationship with these being part of the absolute basics of happiness and living.
My partner also wails but often only as a result of too much saliva causing problems.
Although others may have replied in a similar vein, I would suggest very strongly having a speech and language therapist visit or an appointment at Therapy Centre. They will have a great deal of experience in feeding and eating methods and ways of managing eating and swallowing problems. Certainly as a first step otherwise like the rest of us I suppose, a lot of it is down to trial and error.
I do wish you well and hope things become more manageable and less stressful for all of you.
It is the trial and error that is also so so frustrating.. by the time you figure it out, or you think you have, the situation has changed again and your solution is no longer a solution.
I am sorry to hear about this distressing behavior. It is possible that your mother is wailing not as an expression of despair but because of cognitive decline and confusion. You didn’t mention her diagnosis, but cognitive decline accompanies PSP and can alter personality and impede impulse control. I have found it helpful to check out new symptoms with our neurologist. Also, this article was helpful: nhs.uk/conditions/progressi.... Best of luck. This disease is equally hard on caregivers.
Your point about cognitive decline and confusion is well made. I think that is also factoring into the wailing. I used to think she was terrified, but i think confusion is a more accurate explanation. As for diagnosis... we have not had a consensus amongst all the neurologists she has seen. Some say PSP some say CBD. Some say both. In the end, regardless of the diagnosis, it sucks.
an aspect that helped me a lot with my wife was to understand “compulsion” : doing something you don’t want to do and that you cant refrain from doing… be it on the eating or on the wailing… PSP patients often suffer compulsive items… on top of cumpulsion there is the aspect of “perseverance” the inability to stop any process you started doing.
Some might not recognise their compulsion, but some do… in the later case, its not the explaining that helps, as they know very well what is happening, what can work much better is distraction, soothing, helping them find a route to a calming thought.
it can be words, but it can also be physical. If i bent her neck/head forward untill chin touching chest, in a slow, loving but firm manner, she would stop (most of the time) the wailing although some times it could just go on for ever… her record is around 16h of un-interrupted wailing… neither of us slept that night… but god we slept well the following night
Last but not least i wouldn’t take any of her rantles as personal to me…psychologically, its a game changer. If you have to do something like taking food away, for her good sake, whatever the consequences, keep in mind the good sake and not the provoked answer…
then what has been life changing in managing the disease for us is realising that we had plenty of the most important thing in life : and that is love… health is good, but love is more important and more usefull than health… so reminding ourselves that we are loved and helping them feel they are loved, can help, if one accepts to, overcome PSP.
There is a phenomenon called involuntary moaning, groaning, grunting or vocalization, that can happen with PSP or other advanced neurological diseases. As Simon suggested, the person cannot help it, and may otherwise not be uncomfortable or distressed, and it may not even related to an emotional state. Although with your mother, there does seem to be a trigger and it could be actual upset. In my mother's case it happened a couple of times, out of nowhere; she denied pain or discomfort, and she couldn't explain why she was moaning over and over. We managed to abort an episode by playing music. Some people seem to have to deal with phases of the moaning more often and for longer. Chances are it is a phase, as a lot of these things will pass as the brain continues to change. However, if there is a chance she might be in some sort of pain, since she can't tell you, you could try an over the counter pain medicine such as Tylenol/paracetamol. Or try music, or try putting an arm around her and seeing if physical contact changes anything. The brain is an odd thing.
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