This sounds like a very drawn out and frustrating experience for both you and your mother. I'm sorry to hear you are having such a challenging time.
I appreciate your difficulty as someone I know is currently experiencing a similar situation. So it is from this space that I offer this suggestion.
Seek further referrals, opinions and tests. Your GP should be willing to support you in this and writing further referrals - if not, seek another GP.
My friend has been going back and forward between GP, neurologists, surgeons, and a range of allied health professionals. They were dissatisfied with the first neurologist so have sought out another who came recommended.
So far this has proved much more successful - not so far as they have answers yet, but in that they feel heard and better supported. They now feel all avenues are being properly investigated.
As yet they are still trying to pinpoint the diagnosis and have been moving between hydrocephalus, dementia and parkinsons. Apparently these are difficult to diagnose and are more a matter of diagnosis by exclusion. Which means by default diagnosis will take time. Frustrating for everyone, but particularly the sufferer and carers / loved ones.
So I'm afraid my suggestions are simply these:
- seek a second opinion - or third - or fourth, etc until you feel heard and satisfied...
- seek counselling to talk to someone about how you're feeling and for ongoing support during this process.
Unfortunately, this may be a drawn out affair.
And given the chronic nature of this situation and the changes that have already transpired, you are both likely experiencing symptoms of grief and loss - i.e. loss of function, ability, related pain, symptoms and low mood. A very challenging time for you both.
I hope you find the answers you seek and wish you both all the best, Bree ♥
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