Hi, my name is Will.
I am new to the Parkinsons Forum and only realised it was here as my Dad has started to worry me a bit recently and i’m concerned about his lifestyle. I just need the point of view of people in a similar situation and found the forum.
My Dad has PD and has done for about 10+ years. He is 63 and retired around age 56 or 57 due to ill health.
I still live at home with my brother and mum. We were managing mostly and I can see over the years how his health has gradually declined. But the last month or two has resulted in a noticeable decline.
I’ll list the things i’m most concerned about below.
He is always anxious/nervous. He is afraid to talk to people on the phone. He doesn’t like being in busy places around lots of people. He doesn’t like doing new things (like going somewhere new or to a new club). He really doesn’t like being taken out of his comfort zone anymore. The house is like his comfort blanket and he gets nervous/anxious if he has to go out anywhere.
He spends most of the day sleeping. He states that his tablets always leave him feeling tired and lethargic. He must spend about 3-4 hours during the day asleep on a normal day (probably around 3 x 1 hour naps). He is then struggling to get to sleep at night and spends half the night up. Because he didn’t get a good nights sleep he is then tired in the day time and the process repeats itself. He just can’t break the habit of feeling tired in the day. Additionally if he does something like e.g. go for a walk, it’ll impact him a lot more to the point where his body acts as though the walk has been 10 times further than it actually was. His energy levels deplete and his tiredness accelerates in no time.
He always seems to be ‘unwell’. I’ve said to him before that if he went to a GP and said he ‘wasn’t feeling well’ that the GP wouldn’t do anything as it’s such a broad description. If my Mum wants him to accompany her on the weekly shop he’ll suddenly say that he’s not feeling well. This feeling of being unwell comes on within minutes. I’ll ask him if it’s anxiety or his tablets and he’ll not know. He’ll then go to sleep for an hour and say he’s feeling better. My Mum would wait a few hours and try again later. He’d then say that he was unwell again. He’d have a sandwich and say he was better. Then he’d say he was feeling tired and then he’d have another nap.
For literally 90% of an average day he is either ‘unwell’ or tired.
Because of numbers 2 and 3 he simply doesn’t do anything at the moment. His average day is eat, sleep and watch tv. In any one week at the moment he will probably leave the house once or twice. This is normally to go supermarket shopping with my mum to the nearest town or to see my Grandma (his Mum) who lives in the same village.
It’s honestly like he’s under house arrest or something. For reference the only issue he currently has with his legs is that he gets cramp at night and in the daytime they get tired easily so he starts to shuffle his feet. I just wanted to point out there was no physical disability to stop him from walking (he doesn’t use a stick or wheelchair). Additionally he still has his driving license and access to a suitable car.
A few weeks ago for the first time my Dad struggled to get out of a sofa chair. We thought this was just the introduction of the next ‘phase’ but it’s like something clicked overnight. All of a suddent he now needs regular help to get out of chairs and bed. There was no gradual onset. It just suddenly appeared.
What concerns me is that sometimes my Dad seems to be making no effort to stand up by himself. He’ll just sit in the chair and hold out both arms. He won’t push himself fowards (maybe there’s a reason) but we’re having to lift him deadweight at times which is very akward.
I feel guilty for saying this but i’ve met a lot of disabled people and they are always proud and try to do things themselves. My Dad is the opposite. he is quite happy for you to weight on him. It frustrates me when he just calls someone like were his servant and says ’ I want to get up’ and just holds his arms out and makes no effort to pull/push himself to the edge. Another example is it might take double or triple the time but rather than put the kettle on himself and make a cup of tea he will once again shout instructions that he wants a cup of tea.
He’ll wake my Mum up at 4am in the morning and say he wants to get out of bed as though she is some type of hospital nurse. His needs always come first and if we dispute anything then we don’t understand his condition or have no sympathy for him according to him.
The thing that pushed me over the edge was this morning I think my Dad took an overdose of tablets by accident. He then started hallucinating a bit. He then started saying to my Mum at 5am in the morning that he needed to go to hospital for more tablets. A few hours later he then started saying for my Mum to ring the Parkinsons nurses. She asked why and he wouldn’t say. He could have rang them himself but he wants everything doing for him. He got a bit aggressive when she wouldn’t do ‘as she was told’ and it upset my Mum. I calmed things down and told my Mum to let him go for a nap as he’d been up all night and see how he was doing later.
If you’ve got this far then thanks for reading. We were just about managing but these last few weeks have been the worst. I’d only say my Dad was about halfway through the PD scale. He’s defintiely not anywhere near end of life but it feels like his life is wasting away because of his current lifestyle.
Anything you can say would be helpful. I thank you again for listening and allowing me to share my views.