Awaiting diagnosis... Frightened!

My husband has been suffering neurological impairment over the last year, sadly declined recently. This has been a devastating blow. He has finally had a head & neck MRI with contrast and I have a copy of the disc. He is due at London Neuro hospital next week also. The waiting is frightening, I am tearful, not eating and struggling every day... trying not to let him see my struggles. He has enough to deal with of his own!! How do people cope with the impending doom of a diagnosis and the unknown of the future?

Any tips on coping mechanisms for me and him.

It could be that it's MS or Parkinsons, oh what a lovely choice!?

[summer32A]

I am very sorry I hope you get an answer soon.It is a bit easier when you know what is going on xx

[Zerachiel]

Hi, I personally found that making myself busy both looking after my wife and planning how I would look after her in the future gave me a positive way forward rather than worrying about it; whatever the diagnosis is, you can see the path ahead already and can start planning towards it.

To get all the help you are entitled to and may need in the future will take a lot of time so start now

If you haven't already, apply for PIP, this will not only provide financial support but opens up the access to other help and services such as Disabled Badge and free travel pass.

Also consider asking to be referred on to an occupational therapist to help asses practical help to allow your husband to be safe, walkers, rails, grab handles etc; As you are in the UK you are entitled to an assessment to ascertain what help you require nhs.uk/conditions/social-ca...

Most importantly start to build up a support network, you cannot do this on your own, it will wear you out and that won't help your husband; friends, family, charity groups can all help ease the burden and provide some respite for both you and your husband.

Most important, try to stay positive, it is what it is, enjoy every moment with him.

Stay strong, hugs.

[Hidden in reply to Zerachiel]

Thank you for your kind and helpful response,

[716sam]

My significant other got that nasty diagnosis of cancer about three years ago. He slowly had more and more hospitalization and chemo and slowly declined. He just got a stroke was only able to use his right arm and then died. It was the hardest job I've ever experienced in my entire life, being a care provider for someone you love desperately. What I have learned in the past was that you need to take care of for yourself too!!! That means adequate food & sleep and some personal space. Take Care!!

[Hidden in reply to 716sam]

Thank you for your reply, I'm so sorry to hear what you and your partner went through. so many do, I just took for granted our health, so it is a shock when someone gets unwell. It is not as bad as was first predicted, as many illnesses have been ruled out, although no diagnosis, life is not as it was, and we get no support financially or physically. Are you in the USA or UK?

[716sam in reply to Hidden]

Thank you so much for replying so quickly, I hope you are well and taking care of yourself! I totally agree with your assessment of health. I only fell in love with someone without really understanding the dark side of love. We were born and eventually we die but we don’t really talk about that in our society adequately. I forgot to tell you that my partner had some really bad days dealing with pain, all the different doctors and all the insurance, and waiting to get results of CAT scan and procedures. Occasionally he would lash out at me, with anger and ugliness. It really wasn’t him, he was in pain and was facing his death, and he was frightened. It was really very hard to overcome those periods because I was always trying to be a super person dealing with everything and Then he would lash out at me. Breathing seem to help me quite a bit. There was a lot of times I would just stop and breathe deeply for a bit, and realize it’s really not him, he was overwhelmed and struggling.

I’m sorry to hear about not having enough support financially and physically , It was quite a battle when he was still alive to get adequate healthcare! I’m from the United States, Take Care!!