Hello, I’m new to the Forum and would love to hear about other’s experience with family members suffering from Parkinson’s.
Our Dad was diagnosed with Parkinson’s and dementia at aged 84 and rapidly went down hill since then (he’s now 91).
He still lives at home with our mother (aged 90) who cares for him in addition to 4 daily visits from carers.
We love our Dad very much but the illnesses have turned him into a truly horrible, nasty bully. He is more or less bedbound which means in turn, that our mother is also more or less a prisoner in the home as she is unable to get outside unless someone takes her.
Both myself and my sister live overseas but try to get back to the UK every couple of months. Our brother lives in the UK but is not interested in getting involved with any support. His way to deal with it is to pretend nothing is wrong.
Since day 1, our Dad has been complete denial that he has Parkinson’s and anyone who tells him differently, regardless if it’s medical staff or family, is a complete idiot and he tells them to get out of the house as they don’t know what they are talking about.
He spends much of his days using our mother as a mental punchbag, ranting and raging over delusions he has. However, if the district nurse or doctor ever pop by, he is rational enough to put on an Oscar-winning performance and be on best behaviour so nobody outside of the family ever sees the true picture.
It’s almost like these illnesses have brought out the worst, horrible behaviours in his personality and magnified them by 100%. He has never laid a finger on our mother but he screams and shouts and has huge tantrums over things he has made up and generally, just seems to be in a horrible mood. He has made stories up about old friends, neighbours and carers, accusing them of all sorts of terrible things.
There is no talking to him whatsoever. You cannot sit and try to quietly explain to him about anything. He will not listen, is not interested in what you have to say and even if you walk away when he is ranting, the moment you go back into the room, he starts again. On and on and on.
Our parents live in a very small country town so no support that I can find. I plan to call the neurology team at the hospital where he was previously treated but unless he could go in person, they said they cannot do much.
He is unable to even get into an ambulance anymore and once in the past, when his meds were changed, he became very ill and even more confused until the dosage was changed again.
We have no idea what to do. My mother says she would rather be dead than go into a home, apart from a few health niggles she is running the house, cooking and cleaning and that gives her a small amount of freedom.
If they go into a home, then we fear she will be even more of a prisoner than she is now. Mentally, she is sharp as a tack.
And for sure, in a home, they would not deal with our Dad’s behaviour. Cook me this, cook me that, it’s too hot, it’s too cold, get me this, get me that. He has our mother absolutely running circles around him and unfortunately, she is of that generation where she has spent her entire life looking after him and she struggles to say no and she feels very disloyal complaining about him to anyone but me and my sister.
After 70 years of marriage, having our Dad put into a home and our Mam left alone in the house would kill them both. There are no care homes near to where they live anyway.
So really, I don’t even know what I’m asking for. We just want someone, anyone, to tell us what to do. Is there someone our mother could call?
Is this common that someone who has Parkinson’s is in total denial and is so nasty for so much of the time.
Sorry for the rant.