Hi. My dad was diagnosed with Parkinson’s 4 years ago. Living in Northern Ireland where he doesn’t have access to specialist care and treatment he’s been relying on advice from a very willing but not altogether knowledgeable doctor. Medication has been prescribed and is working but we’re largely on our own in terms of coping withdaily life and the slow progression of the disease. This has led to occasional despair in the face of my dad’s worsening condition. My sister has been amazing in her continual research of the disease and finding solutions to problems and I’m only now trying to get up to speed. I’d be grateful for any shared insight from other carers so that i can better deal with my dad’s needs.
Hi Jonathan, and welcome to our lovely forum community. I just wanted to say hi and to let you know that you can have a look at our website at Parkinsons.org.uk for loads of information, from daily activities to the latest research news, or call us at 0808 800 0303 for free and confidential one-on-one support. We cherish our carers here, who contribute wonderful stories, advice, humor and art daily. I’d encourage you to look around and feel perfectly welcome.
All our best,
I know you were seeking advice and support from carers but if I might throw in a few general points as one who lives with Parkinson’s you may find some of it useful - if not feel free to disregard.
First though I didn’t realise Northern Ireland was so poorly served and I have huge respect for your sister and yourself for the care you are managing to achieve for your father. Parkinson’s is a complex condition affecting all of us in different ways. That you are managing as you are is very impressive.
There is one point I should like to make as in my experience many carers do not realise quite what they are taking on. It is important that both you and your sister look after yourselves and your health. With a condition like Parkinson’s which is a chronic and deteriorating one, thankfully slow moving for most of us, by default everything else including the care role will become more complex. It is not an easy role, it can be exhausting, challenging and relentless and if you don’t take note of your own health and needs the whole home situation is at risk of breakdown. I do not say these things to scare you or be overly dramatic but just to give you advance notice to be aware and put you and your sister in a strong position to help your father for as long as he needs. I think it’s vital in your case when there is little statutory support.
Your sister is clearly skilled at finding things out and I would encourage you to consider the resources already mentioned. In addition to that however you can come back and ask here at the forum on anything you may wish to know. There is usually someone amongst us who has encountered something similar, has a technique that works or a piece of kit that may help. If nothing else you will find non judgemental support.
If you have not done so I would encourage you and your sister to have discussions with your father now, before they may be needed, about how he wants things managed should he become unable to do so. Although these conversations are never easy it is far better to sort it out before needed than trying to cope with the fallout at a time of crisis. I have for eg sorted out power of attorney and so on already. They might never be needed but should they do everything is in place and ready to go. I can now forget it and get on with living.
With regard to the Parkinson’s it is difficult to answer your general post as there are some 40 odd symptoms associated with it both motor and non motor so to that extent it is probably easiest to address issues as they arise. Not everybody gets the same things or with the same degree of severity. I think as long as you try to be honest with yourself and each other and do your best to keep the lines of communication open you won’t go far wrong.
Finally I would like to say there will be a lot of good bits of for the three of you to enjoy, Parkinson’s can give great hilarity and comedy and if you can, don’t let the care role take over - you and your sister are still his son and daughter and he is still your dad.
I send my very best wishes to you all and congratulations if you made it to the end.