Telling Family

[Tess]

My partner was diagnosed over 6 months ago and still won't tell his family about it. I feel I'm on my own with this and anytime I bring it up gently it turns into an argument...I've thought many times about just going and telling them but I know it wouldn't be fair.
I've suggested going to visit and I can tell them if he can't get the words out or simply be by his side when he tells them.
I know he's scared and lots of emotions involved and not something you ever want to have to tell your parents, but I'm at a loss of how to go about this, as things are progressing slowly and they'll notice a visible difference in him now. Covid has been a blessing in disguise for us to spend more time together, but it's also been very much something that he has been able to hide behind.

Did anyone else have a similar experience? How should I go about this? (I do realise it's not a set way for everyone)

Tess x

[Barry52]

Hi Tess,

I understand how your partner’s position is affecting you and it certainly puts a strain on relationships. From my own position I wanted to ensure my mum and grownup children heard it first hand and face to face. It was a very emotional experience for all of us but it gave me the chance to point them in the right direction i.e. MNDA website, rather than them searching the internet and finding spurious stories about the disease.

I know from your previous posts that your partner is a young man and I assume he is still working. If the workplace knows about his situation then there is a danger of it leaking out and second hand stories have a tendency to become gossip. Try to discuss this with him as a reasoned argument but always respect his final decision.

Best wishes,
Barry

[Delta]

Hi Tess
I read your post and it took me right back to the situation with my husband following his diagnosis.
Sadly he died very suddenly just 5 months later so we never really had the chance to fully come to terms with what was happening.
I could see him deteriorate very very quickly but he did not want attention, pity or sympathy, he chose not to share his diagnosis with hardly anyone at all, this included very close family members and friends.
While I respected his decision I found this very frustrating and we too ended up arguing at times. Such a waste of what remained of our very limited precious time together.
I felt an incredible pressure was placed upon on me making an already difficult situation even worse.
I had to avoid people and the truth on several occasions which was tough and we were both denied a great deal of emotional support. I was an emotional wreck and living on my nerves!
I think there was also an element of denial. It was only the week before he died that he relented and let me go and tell his dad and his best friend which was awful but I’m so glad I did. They were both meant to see him the following week but never did. He died very suddenly and unexpectedly in his sleep, peaceful for him but utterly devastating & traumatic for me.
I think for younger men, particularly when they are fit & athletic, having to accept that your body has failed you is just too much to contemplate.
I think you need time to come to terms with the diagnosis before sharing with the people that need to know but with MND time is not always on your side. By sharing it almost admitting defeat so I can totally understand why some people are reluctant to do so.
My husband didn’t carry any weight and by the time he starting engaging with the MND support services it was too late. He lost 3 stone in the last 3 months.
I vividly remember the feelings of utter hopelessness, the loss of control over our lives, everything we knew and our future plans totally ripped apart.
My role rapidly changed from wife to carer. My husband was an inspirational and amazing man, the love of my life and I will ever get over losing him.
My advice would be to hope for the best but prepare for the worst.
Get all practical affairs in order, fully engage with the MND supports services and come to an agreement about sharing the diagnosis with the people that really need to know. Tell him not deny close family members the opportunity to be there for him, to express their love and support. How would he feel if they kept something like this from him?
An MND diagnosis is truly awful to come to terms with but I feel the way our situation played out it put me in an almost impossible position and it was me that was left picking up the pieces once my husband was gone in so many different ways. To be honest I don’t know how I’m still standing.
I really do believe the way you handle the diagnosis mentally is a huge factor on the progression. Your brain is your best servant but your worst master.
I never really posted on this site but I did read many of the posts and still do occasionally. The courageous way people live with this truly awful disease amazes me.
I feel like I have rambled on a bit but when I read your post I felt I had to reply.
I really do hope you can come to some sort of agreement that ensures you both have the support you need xxx

[miranda]

Hello Tess. I wonder why he doesn’t want to tell family about his diagnosis? With the easing of lockdown, I would guess family might seeeven more differences than you do who has been with him every day. Whenever And however family and friends are told, it’s going to be difficult' so, in my case I wanted it over and done with once people started commenting on the changes in my speech which in the early days was my only symptom. I do hope it’s soon resolved for both of you.

[Banned]

For reasons of 'Health and Safety', he must inform his workplace. He may then apply for AtW.

[Tess]

Hi Barry and Graham,

Thanks for your responses there. Unfortunately, he had to stop working last November due to deterioration of upper limbs and so up till now he's been lying to his family and with Covid has being saying 'he is working from home'. I can't stand the lying, but also want to respect his decisions with this.

There is slightly more to this story though, as we are applying to housing associations back in our home area and a family member works at one of the associations that we really need to apply to urgently. I would hate for the family member to find out through an application or colleague and hence the reason I've been bringing it up more often recently, as this is becoming more urgent if he wants to inform family the right way.

I know there's alot of emotion there for him as well as myself, but trying to support him right now in the best way possible and difficult when close family aren't in the loop.

Tess x

[Tess]

Hi Delta,

You had me tear up there. I'm so sorry for your loss and thanks for the advice.

It's very difficult when you want to support, but alot of pressure doing it all by yourself, so I feel the pain you have had. I do everything right now and being furloughed has been such a great time for us to be together. However with restrictions lifting I can't help but think how things may have to change very soon. For us this will included moving to accessible accommodation closer to home, me deciding what to do with working arrangements and generally the possibility that I can't be around 24/7.

The question that has been going over and over in my mind is 'what if something were to happen to me? or him for that matter'. Possibly a dramatic thought, but let's face it...it is possible. He would have no one to turn to/assist and alternatively I would have to explain to family the situation and why he didn't tell them. These thought are terrifying- I wish everyone could be more open. If people mean something to you, you should be able to share the good and bad with them. I know he's scared and with the more time that passes the more over thinking and the terrifying build up.

He does want to do this face to face, so hoping this will be soon....for his sake.

Tess x

[Tess]

Hi Miranda,

Thanks for your comments there. We've had open discussions about it and he's simply scared and this breaks my heart. It's not news anyone should have to give to family, but I agree definately the sooner the better!

Everyone on this forum knows that time is not on our side which is why often I have to come out of my emotional head and get my practical head on (easier said than done).

Tess x

[Ellie]

Tess, I'm so sorry you've been put in such an awful situation - it's just not fair on so many levels.

I've no words of wisdom to add to what's been said above but I wanted to give you support (and a big hug)

Wishing you all the best.

Love Ellie.

[Deb]

Hi Tess,

I am so sorry you are in this impossible situation but well done for respecting your partner's wishes. It must be so hard for you as you're not getting the support you need, as a carer because your family don't know you need it ! You sound like such a loving and devoted partner.

As lockdown eases I guess it will be harder for your partner to hide his diagnosis. From my point of view, I wanted time to come to terms with it before telling my family but we all live very close and it was obvious I was seeking answers for my walking problems. They wanted and deserved to be informed and I felt better once everyone knew.

Sending you hugs and I really hope you are able to take care of yourself too,
Love Debbie x

[Delta]

Hi Tess

I can totally understand the fear of sharing the diagnosis but by delaying it’s just adding another whole layer of stress to an already devastating situation for the both of you. I’m sure you could do without it!
Yes, his family will be upset but they too need time to come to terms with the diagnosis too and it would be such a shame to deny them that.
Finally sharing with loved ones will provide a huge sense of relief, I’m sure of it and he’ll feel more in control again rather than letting that horrible MND call all the shots.
I remember the sense of shock when the news came out that my husband had died and it was due to MND. Some of his close friends were gutted that they didn’t get the opportunity to help and support him. They knew something was going on but not that he had a terminal illness.
He had basically hidden away and avoided people for the last 3 months which was so unlike him.
It would be so much better for the both of you if he just took the bull by the horns. We only have so much emotional capacity so it makes sense to offload any that you can so you can focus on the stuff you can’t.
Sending you much love and strength xxx

[Tess]

Thanks for your encouraging words Delta! I'm sorry that you had to conceal things for so long yourself....a very difficult situation to be in.

I'm with you on this one and I know it's a 'strip the band aid off' situation. It needs to happen in the next month. Nothing about it will be easy but I know it will be a load off or chests without the lying, avoiding and covering up. I don't want him to look back and think I wish I had told them earlier or I wish I spent more time with family etc.

And breathe...

Tess x

[Guest]

I know exactly how he feels.
I've had MND for 6 years and still some of my family don't know, or most friends either.

It's bad enough having it without talking about it and having people constantly asking how you are. I certainly don't want to see pity in their eyes!

Luckily I have a strong partner who doesn't care if I disclose or not and is able to handle me on their own. Not to disparage you, every situation is different; just glad my partner will let me have my way on this.

[Ellie]

Hi Spooky and a warm welcome to the Forum.

You're right to say that we all deal with things in our own way - there is no right or wrong way, just whatever suits your circumstances. Great to have a partner who supports you too.

For most of us, progression overtakes the desire for privacy and the physical differences are stark, so the truth outs one way or another if we want to see family and friends

Take care.

Love Ellie.

[Tess]

Hi Spooky,
I know everyone is different and over the last 6 months I've thought alot about what's the right or wrong thing to do in this situation. I think the key in all of this is having support around you both carer and partner.
I have even told my friends and family to not constantly ask about things, as for me too, it's not something I want to discuss all the time as my answer will constantly be 'yep he's progressing'....awkward silence. Although I know it comes from a place of love..im lucky to have a clear understanding with my loved ones that I'll reach out when I need them.
He would visit family fortnightly pre covid and so they'll need to know soon as there's no hiding from the truth when it's visible... I know he's just building up the courage right now and I'm so proud of him.

Tess x