Mum has parkinsons with fluctuating cognitive impairment

Hello, I help to care for my mum. My dad is main carer but not coping as he is elderly and not that well himself. Mum went into hospital over a month ago (malnourished and she had a pressure sore). She is loads better and much stronger now, has put on weight and is on right medication. I want to keep her well and not go downhill again. I have stopped working since July to care for her and will be like like this for foreseeable. She is currently in temporary respite, while we wait for home care package providers. I just wanted to say hi and are there any other carers here who help to look after an elderly parent with parkinsons? Thanks. Kathy

Hello and welcome. Have you called your local social services team or not? I’m a young carer for my young son. There are lots of options out there. This is a useful guide on what is available that is worth a read Social care and support guide - NHS. Call tomorrow to make inquiries.

And my disabled son is in hospital now with a severe urinary tract infection. So I fully understand how you feel. Have you tried writing things down in a diary? Or perhaps, you could see if you can talk to a therapist or counselor? Get a referral to local community mental health services. That might also help.

Carers can help with many things including medication.

Please do NOT promise mum and dad that “I’ll never put you in a care home” but say that you will “always do your best” instead. Are you aware of the link between Parkinsons and dementia?
If not, it would be helpful for you to read up on the subject. My own grandmother had this problem, as did her two sisters, all very intelligent women.

Hello KMM,

My Mom has Parkinson’s, diagnosed 2015, although we do think she has probably had symptoms for decades prior - once you know the diagnosis it explains a lot. She fell in 2013, fracturing her hip, most likely due to her Parkinson’s. She had one of the classic symptoms of foot frozen to the floor. Her tremor though, very slight and I only saw it when the doctor pointed it out.

She showed her first signs of confusion actually in 2012, post op from a knee replacement. We presumed it may just have been effects of anaesthetic, but now I’m not convinced by that.

Her diagnosis was later complicated by vascular dementia, but long before any brain scan showed brain damage consistent with that, there were signs and symptoms of dementia. We suspect Lewy Body, there are typical signs of that which she presented with. It doesn’t show up on scans. Typically, there’s “un-learning” of ingrained things, sudden lack of understanding about money, even the concept of it. Paranoia. Fluctuating levels of capacity, sometimes minute to minute, hour to hour. Ultimately we will never know.

Sadly for my Mom, her story with this is a difficult one. My Dad never coped, partly ill health but he never and still does not accept her diagnosis and refuses to learn anything about either of her conditions. He could not medicate her on time. Neither he nor my Mom would get outside help and Mom went into nursing care in 2016.

If your parents are open to outside support, there is lots out there. Parkinsons UK have clubs, there should be a Parkinson’s team at your local trust, usually nurse led by an ANP. There’s neuro rehab, exercise classes, physio. The Parkinsons UK website is a mine of information, you can educate yourself really well from there. My Dad never would, so I did.