Hi there, my Dad Bill was diagnosed with Parkinson’s about a year ago but had tremors for some time before that. His condition has worsened quite a bit in the last 6 months and he’s become very depressed and frustrated. He was very sporty throughout his life, played football, squash, golf etc and he’s 81 years old and used to be a successful business man working as an accountant for Total Oil for over 30 years. He worked from the bottom up and hails from Lambeth, London. He was in the army for national service in Kenya.
The thing is, he’s so opposed to any suggestions to help him lately. He frequently says he wants to die and it’s becoming very hard to watch my Dad get so down. He just doesn’t want to go out, except I persuaded him to start walking up and down his road in the last week which we’ve done 3/4 times to help increase his mobility as he’s had some falls and is very unsteady at times. He has a panic alarm.
He has a carer that he pays for come in Mon to Fri morning and night to help out as he’s refused me being his carer as he finds this humiliating.
I had an idea that if I could find someone on here with similar interests that I could get him a tablet device to arrange a Skype call so that he could talk to someone about the condition and frustrations and maybe this would help him not feel so isolated. He cancelled his newspaper subscription because I think the news was depressing him more and one of his eyes has started drooping but I have noticed he’s reading books again thankfully.
If I can find someone on here who loves football and is of a similar age who has Parkinson’s I plan to set up a FaceTime or Skype type video call and explain to my Dad that I want him to talk to someone and to please give it a chance and then make sure I leave the tablet on a stand and see what happens (i’d go). He may be very rude and just cut the call but I have to try as it could go the other way and he makes a connection with someone whose in the same boat as him.
So if there’s anyone out there in their 70-80’s who has perhaps any of the similar background to my Dad i’d really appreciate it if you could reply so that I can try this out?
I just want to help him in some way.
A warm welcome to the forum.
Sorry to hear about the difficulties your dad has been facing following his diagnosis, unfortunately this is quite a common story among people with Parkinson’s. Based on what you’ve described, it sounds to me like your dad may be experiencing some depression and if that’s the case, you’ve definitely come to the right place for support. We have a lot of information on the Parkinson’s UK website about depression including the kind of help that’s available to your dad, support groups, useful contacts and advice for family. You can find this information here: https://www.parkinsons.org.uk/information-and-support/depression.
The forum is a great place to meet people who know exactly what people who know exactly what your dad is going and a great source of support for you as well. We advice members to protect their identity as the forum is a public resource so we do not encourage members to share their personal detail in threads, however, you can exchange contact details via private message at your own discretion
I’d also recommend that you try reaching out to his healthcare professionals to assess him and possibly check his medication as they may need to review it. Lastly, our helpline and Parkinson’s local advisers are here to answer any questions you have about depression. Please give us a call us on 0808 800 0303 or email us at [email protected].
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Hello, sorry to hear things are so hard for your dad and Reah has given you some good advice I just wanted to make sure you knew that the forum can be a source of support for you too if needed. You are in a difficult position and it can be incredibly frustrating and stressful when you are only trying to do what’s best; the forum can be a safe place to ask questions, rant cry, laugh hysterically - whatever you need to do which may help you to keep going when it feels too hard. I wish both you and your dad well.
Thank you Reah
My Dad is adamant that he will not take antidepressants and his medication has been reviewed a few times.
I’ll check out the resources that you have recommended- thanks again for your reply.
Hi sorry to hear your Dad is feeling the way he is. This forum is really helpful and the support from those who are living with Parkinson’s in one way or another is great. My lovely father in law has been staying with us since the start of lockdown, he was diagnosed with Parkinson’s about 6 years ago and last year with LBD. We’ve learnt a lot about each other in the last 12 weeks and one thing he has expressed is that he doesn’t want to be defined by his Parkinson’s so if he wants to play bowls for example he doesn’t want to do it with a Parkinson’s group. So I think it’s a great idea to get your dad chatting to someone but maybe don’t make it about the Parkinson’s. Hope that doesn’t sound negative, just a thought. Really hope things improve for your dad
I think you make a very valid point Mrst1. I was diagnosed with Parkinson’s just over 10 years ago and did initially link in with local support groups. They do an excellent job and give a lot of people much needed support so this is in no way a criticism, but it just wasn’t for me. I have Parkinson’s and when you live with it it can never be far from your thoughts since in one way or another it does rather rule your life but that doesn’t mean I want it to be my life. That’s not to say there won’t come a time when I feel differently but for now my involvement with ‘all things Parkinson’s’ is relatively superficial. I use the Parkinson’s UK website or internet when in need of information and I do regularly visit the forum and respond on occasion and find that is enough for me for now. I decided very early on that I wanted to live with my Parkinson’s for as long as possible my way and that is what I do. It may well be Alex that your dad will benefit from contact with a fellow person with Parkinson’s or maybe just a person with a common interest in football. You have an interesting and creative approach to the difficulties your father is facing and it may well help but the point made by Mrst1 may give you food for thought. I would be interested to hear how you get on. One final thought, I think it is worth following up on Reah’s suggestion your dad may be depressed, if you can get him to go, because that could be behind a lot of what your dad is experiencing, I would however add that it seems to me Parkinson’s doesn’t always give you the option of reacting ‘normally’ or what seems to be the logical thing to do. In my case for eg I can get stressed and anxious over ridiculously minor things which rational head can see quite clearly but when up against the might of Parkinson’s head turns into a huge battle against which all my strategies to cope are not always successful. Parkinson’s has a lot of non motor symptoms which often cause bigger problems than the more obvious motor ones. Maybe it would be worth your looking into that side of things a bit, it could perhaps give you other ideas of how to help your dad or at least understand his reactions better. Good luck. Please do let us know how you get on.
Thank you for your reply. I think you’re right and that my approach isn’t actually going to work. I looked up the links that Reah posted to me and found a local coffee session that PD sufferers attend once a month and I mentioned it to my Dad saying maybe he’d meet some nice people etc a d he outright said he didn’t like the idea but I said please go to it just the once and if you don’t like it I’ll never mention it again & he didn’t say no so maybe he will try that option.
He’s getting increasingly fed up with modern technology so a tablet and Skype etc might annoy him, my son certainly thinks so.
This is a really great forum for info so I’ll look up lots of advice on here.
Thank you Tot and again I completely agree. I’m glad you’ve all given advice as I really don’t think that was the right approach and maybe the social meet up won’t be either.
My Dad is frustrated with the physical effects but i’ve noticed the change in temper especially over things that wouldn’t have bothered him before. I spoke to a neighbour who Mum unfortunately passed last year after 16 years of living with PD abs he said she developed OCD and a very low risk awareness of things. He said there’s lots more to the cognitive side of things which I hadn’t found out about before when I read into PD. I need to obviously learn more through this website about that.
My Dad would never take antidepressants & i’m even surprised that he admitted to me that he’s feeling so low so often. My brother died unexpectedly in January 2018 of a brain haemorrhage aged 48 and this was a massive shock to the family & he said to me last year that he’s never got over it and I said not had I. I think that, more than the PD made him want to give up on life and my Dad is just not the type of person to seek grief counselling etc so it’s very hard knowing what to do.
It’s like he doesn’t want to go out anymore. He’s refused to do the walking up and down his street the last few times i’ve gone there.
I try and be really patient but sometimes he’s really rude and I then say something but I always say I understand his frustrations. He probably wants to give me a right hook as i’m a bit of a chatterbox.
Thanks again for the good advice x
My husband takes 1 10mg of Silegiline in the morning and has done for 25 years. He doesn’t suffer with depression and has always put it down to this. The newer version is Rasigiline.
Don’t be too hard on yourself, you are hanging on in there and doing the best you can, that’s all anyone can do.
Just a thought to consider if he wants to 'do it himself ’ might he consider writing about what he thinks or feels as in diary, journal poetry or whatever or maybe drawing? Or perhaps you should let that side lie awhile and just try and find a hobby or something to pass the time for fun even if on his own. I am wondering if he feels like you are going on about him not wanting to go out etc and that is making him dig his heels in.
Please ask dad to get in touch, finding someone to open up to is as important as medication