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luce
4th May 2012, 00:30
Hi all

For a long time my mum has felt like she is walking with a house and an elephant on her body, however now she is feeling like she is being crushed. Has any one else experienced this? Any ideas if it is the lungs filling up or dehydration? If anyone has any suggestions how we can support her please post...

So far we have tried
- sleep very upright
- gentle rubs or cupping on back
- soft pillows to support when sitting
- medical consultation

tomorrow she will try a pracetamol suppository as she cannot swallow meds and doesn't want patches or injections.

Just to state the obvious, yes we have liaised with GP etc
kind regards
Lucy

luce
15th May 2012, 23:40
Hi all,

to answer my own musings-it seems that the medical professionals think that it is probably the dehydration causing the crushing feeling

Please think of her- she has loved me printing off the forum threads for her to read and share the journey.

In case anyone else gets the feeling of being crushed - mum found that Bowen therapy assisted her with pain relief and sleep today. Of course it is not a cure but as her symptoms have progressed it has usually helped her in some way.

Luce

looby
16th May 2012, 10:32
hi Luce

I have always found your posts to be very informative. You are obviously very close to your mum. You are both in my thoughts and prayers. Keep strong.

best wishes

Lyn

roy
16th May 2012, 16:08
Hi Luce,

wishing you and your mum some comfort and relief.

thinking of you.

Roy.

pete
16th May 2012, 16:30
Hi luce,

I wont pretend to know how your feeling about your mom ,and sounds as if you have pretty much covered all the bases as far as you can , wondering what the Doctors came up with to help her , or is it as usual not that much in the way of help. So sorry, and wish her well and you also, do hope she finds some way to ease her pain .

Best wishes
pete

luce
18th May 2012, 00:36
Thanks all of you for your replies, made me cry.

The GP has been helpful with home visits and not pushing mum into a prescription for something she does not want. The prescription would be in a syringe driver but mum does not want to take morphine, she wants to be with it. We are now aware that she can have a low dose that would not knock her out, however she is having the paracetamol suppositories only combined with the bowen therapy. There isn't much else that can be tried as mum cannot swallow, cannot tolerate patches or anti-inflamatory or strong codeine based meds, and does not want a syringe driver. It is a tricky thing trying to get meds into her, trying to sort out her epilepsy med being injected now since she cannot swallow the liquid

The other thing that was prescribed is fantastic- artificial saliva spray (glandoscine or something like that).

We have managed to get some fluid into mum via a syringe and crushed ice, she is not feeling so crushed but is still in pain (but never grumbles). Interestingly although mum has not eaten for some months and has only been drinking miminal amounts for a couple of months (and taking 15 hours to do so), recently she went down to about 30 ml a day and sometimes less. Mum always had to have thickened liquids to aid swallowing, and only could drink water twice in the last 8 months- however the last 2 days we have been able to administer via a syrine some water (unthickened) into mums mouth. I post this as it is not something that mum would have tried as she could not swallow water or liquid without the thickner, however she was dehydrating so much and suffering she somehow has managed to take some. The other thing I do is finely chop icecubes (something mum was not wanting recently as she said she cannot bear anything on her tongue because of the bulbar symptoms. However we find each day we have to try something different that before would have been no good, but something works out. Top Tip: try things that before you thought would have been impossible as no day is the same with MND

Mum is getting very weak and sleepy throughout most of the day. Latest emergency is to get a glide and lock sheet to re-position mum in the wheelchair now she is weak and cannot do it herself.

Just got home, Fab Marie Curie nurse down with mum tonight (as she lives alone- her choice as all her friends and family offer to move in). I will take over trying to inject fluids tomorrow at 5.3Oam so i had better get to bed.

Thanks for keeping us (especially mum in your thoughts and prayers)

Love Luce
PS not sure if this post makes sense as can't think straight

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