Hi there this is my first post. My Dad was diagnosed with PD 8 years ago and since then my parents have made no plans for what the future may hold. I totally understand why it is difficult to think about the future with a progressive illness, but it has been extremely worrying for me seeing Dad’s deterioration knowing that we are not prepared for what might be next.
For the last year Dad has deteriorated quite rapidly and I have suggested moving to a more suitable house/bungalow (they live on a steep hill with steps up to the house, no downstairs loo - totally unsuitable for a disabled person). I have also suggested numerous alterations to the home to make it more suitable. Everything I suggest I get told ‘I’m not that bad’ or ‘your Dad doesn’t need that’.
Dad took a turn for the worse a few weeks ago with a bladder blockage due to constipation. He’s been in hospital for over a week, and he is like a different person - he’s delusional, incontinent, and can hardly speak. I know it’s early days, but I can’t see him being able to come home - if he does, he’ll be trapped upstairs as that’s where the only bathroom is.
I had a plumber come to the house to quote on installing a downstairs toilet, but still my Mum was saying ‘he’s not that bad’… but he really is very poorly.
Has anyone else dealt with both parents who are in denial about a PD diagnosis? Any advice for helping them understand?
On an additional note i think some of my Dad’s deterioration may be due to the doctors on the ward changing his parkinsons meds (they have reduced the dosage of sinemet from 4 to 3 times a day). Anyone got any advice?
Thanks so much - I am navigating this alone trying to support Mum through this as well as trying to make sure Dad is getting the right care in hospital but it’s exhausting and i feel like i don’t know what I should be doing!
Hello Jojo,
We’re sorry to hear about your father’s challenges of late. Denial and mental health struggles around Parkinson’s are common, but each patient is different, so we recommend discussing these changes with your dad’s medical team so you can be sure you are offering the best course for him. You will find some information on our website at Parkinsons.org.uk, or you are welcome to reach out to our helpline on 0808 800 0303. The helpline team specializes in finding local support, so this would be a good first step to look into possibilities regarding communicating the reality of Parkinson’s to your mum and dad. You are sure to hear from our lovely community members soon, but in the meantime we strongly suggest reaching out to the helpline to address your family’s specific needs.
We hope this helps, and with our warmest welcome,
Jason
Forum Moderator
Good morning jojo … Sorry to hear your parents are having Parkinson’s struggles & that you are very worried about them. I would imagine that your parents see themselves as independent & do not want to worry you.
I have Parkinson’s with mobility issues & my GP referred me to the local Primary Care Network [ I got a blue disability badge & was given a non means tested attendance allowance worth £72 a week] & also I got a “home assessment”. Both were incredibly helpful.
Your parents for example might get a stair lift. I had my flat improved. Chair height raised, useful handrails in the bathroom etc.
Your parents might listen to these non family professionals.
I agree with Steve2, most hospitals have professionals or departments your dad can be referred to, maybe a chat with some of them would be more of a reality check. I would go further and say that the hospital cant leave your dad go home without knowing what he is going home to, so seeking these professionals out could be timely anyway.
Thank you so much for your help i will call the helpline. I love my Mum and Dad so much and just want to be here and support them through this really difficult time.
Hello jojo
Sorry to hear of your father’s decline at this moment. I would say that if your father has any UTI (urinary tract infection) this brings on quite severe delirium and confusion (not Parkinsons) which is reversible once the UTI had been successfully treated. Also any hospital stays for Parkinson’s sufferers often causes hiccups with medications because hospitals fail consistently to give medication on time as is necessary.
Once home and back in his own routine generally equilibrium is re established.
The Parkinsons UK helpline is a great resource and available to family and carers not just the Parkinson’s sufferer, give them a call and talk through your concerns. You can also ask directly to your father’s hospital ward nurses or via the hospital PALS (patient liaison service) for a meeting around the patient (your father) that includes doctors, nurses, social services, occupational therapist, your mother and you to discuss going forward for your Dad with what is required. The OT should ask questions about their home set up before he will be discharged.
All the very best
Thank you so much for your help. I will call the PALS service as I am really concerned about the care Dad is getting. The consultant has changed Dad’s Parkinson’s meds, and they are not allowing him out of bed due to his low blood pressure (something he has lived with as an effect of Parkinson’s for years). Really concerned he’s getting weaker every day as he’s not getting any exercise, and he’s getting really disheartened.
I have asked several times for the consultant to contact the Parkinson’s clinic Dad attends to speak to the nurses there, but he has refused to do so. Instead they have bought in a mental health team due to Dad’s hallucinations, which are clearly now being caused by a change in medication - not a mental health issue.
I can not believe the lack of understanding of Parkinson’s Disease. It’s certainly been eye opening, I feel so bad for Dad and other PD patients and their families who have to deal with this
Unfortunately the experience you are having with the hospital and your dads care is not uncommon. You will be your dads best advocate and should contact all the agencies you need to to ensure your dad is receiving care appropriate to his parkinsons condition. Of course some of his symptoms can be caused by various other medical problems, but to dismiss your request to contact his parkinsons team first is just wrong. It is an eye opener when you deal with medical or nursing staff who do not have an understanding of PD. As a loved one/carer, we can be intimidated by professionals who make us feel a nuisance, your dad is lucky to have you . With luck, if you persist, they will eventually contact the right people. Not all hospitals or doctors are the same, but its stressful for you having to keep questioning them. I hope you get help and support asap
I just wanted to give you kind people an update on Dad. He is still in hospital, the main issue is potural hypotension. He has been unable to stand since the urine infection. He was put on one drug for the PH but it made him quite ill. He’s now on another drug which we have been told is the last option available, he’s also got an abdominal binder. He managed to sit in a chair for 45 minutes yesterday before he started feeling dizzy.
It took nearly 3 weeks of Dad being in hospital before we finally got a proper meeting with the consultant, only after I started to ‘kick off’ and complain repeatedly. We have been told there are two options: if the new drugs start working he may be transferred to a rehab centre for a couple of weeks to get stronger before coming home, but if they don’t work he will be sent home in a ‘controlled environment’ - basically bed ridden with the hope being at home will improve things, and with the support of physio and care services. I have no idea how this will work but i definitely think being at home will help him. He’s very depressed in hospital and is having a lot of hallucinations and is very confused, which is all new for him, and upsetting to see Dad this way.
This forum, and the lovely Parkinson’s UK nurse (Dot) has been invaluable to me during such a stressful time. Thank you so much
Hospital cannot send your Dad home if family refuse to care for him. That may sound horrible but your Dad is legally an independent adult and it is actually illegal for anyone to be compelled to take care of someone else, loved one or not. If Dad is unable to care appropriately for himself at home that is a health safeguarding issue for him and your mum, and must be repeatedly and consistently pointed out to medical professionals. If anyone says he’s fit to go home that only means there is nothing further the hospital can do to improve his state of health. He still has ever deteriorating Parkinsons Don’t be afraid of the “mental” label, that just means his brain is ill. That happens with Parkinsons. Hallucinations, delusions, paranois, dementia can be part of Parkinsons and decreasing dopamine. You mums wellbeing also needs safeguarding as your Dad deteriorates. If your Dad can’t look after himself, the local authority has the duty of care. The best care is not necessarily at home by the family. The hospital may not be able to do any more for him but don’t fall for the emotional blackmail that passes the buck to the family
