Hello
Welcome on board and sorry you are having such a hard time. There are sadly no easy answers to the situation in which you and your husband find yourselves. For what it’s worth I suspect your ‘analysis’ of your husband is probably pretty much spot on. May I suggest you give the help desk a ring, I’m sure it will help to speak to someone. In the meantime I’d like to reassure you that your husband’s reaction is not unusual but can be terribly difficult for family and friends who feel they can do nothing to help or more to the point know so little about the condition, don’t know how to help. On top of that you, family and friends also have to adjust to the diagnosis. I know it probably doesn’t feel like it but you are hanging on in there, being there for your husband as best you can while he finds his way. In one way or another we all have to go through the early days and I mean all, the person with Parkinson’s, family and friends. It is a time when much is unknown and uncertain, when the future can look like one gigantic black hole and the only way is down. The reality is not like that. Yes it is a chronic condition with as yet, no cure, but for most it is slow moving and change can be adjusted to. Things don’t suddenly change dramatically overnight. Things do settle down but the timeline is variable and it sounds like your husband may be a slow burn in coming to terms with it all. There are a few things worth remembering just now.
- Remember to look after yourself, you can’t support your husband if you don’t and you can make use of things like the help desk for yourself
- Do your best to keep the lines of communication open but if he doesn’t seem to be following advice and therefore not helping himself - which can be immensely frustrating - it probably won’t help if you keep reminding him. Try and keep it low key, drip feed the ideas, choose your moment to discuss things etc. It can take time and patience
- Don’t go mad and read everything you can lay your hand on. You run the risk of information overload and your imagination can run wild. Try and concentrate on what you need to know now and write questions down - your mind can go blank at the most inopportune moments
- Remember you don’t have to change your hopes, dreams and plans just maybe do them a bit differently
- I personally believe very strongly that a positive mindset is half the battle and finally
- You can and will both get through this and find ways to live with Parkinson’s, we on the forum have all been there and lived to tell the tail and the forum is here 24/7 if and as you need.
Take care and let us know how you are getting on. I send my best wishes and virtual hug to you.