Partners reactions to our diagnosis

[Sammy88]

Hi all, After the shock of being diagnosed with MND I am struggling with my husbands lack of compassion/ empathy.

Perhaps it's me being to needy. Maybe I'm expected to just carry on as normal. The thing is I can't just carry on as normal . Literally everything is more harder. I need actual physical help, like hanging out the washing or his arm for support and balance. Just little things a day that make life that much easier.

On an emotional level my husband seems distant, bluntly refusing to discuss my diagnosis.

Am I asking for to much ? What was your experience from love ones ?

 

[lgelb]

It is a shock that everyone deals with a bit differently. Since you are the one that has had the issues, physically, you may well have been more prepared than he. I would say to him as you have said here, that you want to talk when he is ready, and comment factually about something that you need help with (like "I'm going to need help hanging out the washing, please").

But, I would also give him time to process since you have had a bit of a head start. It can also be that he is still in denial, as is natural, and providing physical help is an acknowledgement of something permanent that he does not want to sign the check for as yet.

Since you have not yet had access to a second opinion, which we always recommend, as you know, he may also be holding out hope that the diagnosis is in error (it can be).

It's about a month now? Just keep talking, even a little bit. And looking at your first thread, I would certainly seek out a new GP or work with MND Connect to find a way to get a second opinion, and medication as befits your diagnosis, presuming it's confirmed. The more progress you make on these fronts, the more certainty you both will have.

Best,
Laurie

 

[affected]

I agree that the diagnosis is a huge shock and each individual reacts differently. It is not uncommon to take months to really settle into the new reality.
That doesn't excuse anything, but maybe he is reacting with denial which is really common. More often we find CALS noting that the PALS is in a lot of denial.
You don't mention how much you have tried to sit and talk things through with him, so I don't want to make presumptions.
Possibly it could help him if you had an appointment together with your doctor or someone from the MND association there to discuss the diagnosis and strategies with both of you. That way a third party could help to discuss the reality and allow him to ask questions that he may have, but not want to ask you about.

In the meantime - if you have trouble at all with mobility, are you using a wheelie walker? If you have a drop foot, have you been fitted with a brace? We do have a thread in the resources about anticipatory planning, and it may be worth you reading there to think about where your limitations are and what things might need to be addressed first. Safety is so important - a fall and injury can be a game changer for you, so please take all steps to start using equipment to stay upright.

 

[Nikki J]

I am truly sorry. It does sound like maybe denial fueled by the circumstances surrounding your diagnosis ( the planned repeat emg and your gp’s recalcitrance. ) It is very hurtful to have someone close to you in denial. when you need practical help from them it is worse

 

[ReginaS]

I really hope for you that he comes around. It hurts double when you are diagnosed and then are left standing in the rain by a person close to you.
If it continues, and I hope it won't - are there family members, friends who can help you/spend time with you? Let's say if he needs more time or is so frightened that the person who always helped him now needs help and for one or more reasons he cannot do it - that can be very hard for both involved. Sincerely hoping that it's just a matter of time.

 

[MJT]

As the wife of someone with ALS, I can speak to the denial. In the beginning, I even dreamt that it was all a joke and woke up laughing. I also remember a nurse saying that "people get used to it" and thinking she must be out of her mind. It's been a year since my husband's diagnosis and rapid decline. However, I am very proud of my level of acceptance. I hope your husband comes around.

 

[Sammy88]

Thank you all for your comments, I do appreciate all your views. I'm normally the strong one, the head of the family. I have tried to sit him down and talk things through. Ask for help, point out certain difficulties I have. I do wear a foot brace but my whole leg is very weak now. I shall back of a bit and hope for the best, I've explained till I'm blue in the face, can't really do anymore.

I have found my local hospice and MND connect of great help. They had a stair rail fitted and a blow up chair thing that goes in the bath to help me. I had a home visit yesterday from a MND connect volunteer . The lady told me in great detail what I have coming around the corner with MND . Scared the life out of me. I showed her my emg test results, she pointed to the reduced pattern part and said that means you have upper motor neurons problems to. I thought an emg could only detect lower ones.

I pointed out to her I was still hoping there was a small chance I had mmn or basically anything but mnd/als, but alas she said if they put anterior horn cell disease on the emg that's it you have MND.

 

[Mary2]

I wonder if there is an off chance that your husband has been surfing the web about the diagnosis and has gotten overwhelmed by all that he has read.

 

[affected]

I'm so sorry - we will support you however we can. Have the doctors talked directly to your partner?

If your entire leg is weak, please consider using a walker, they are amazing.