Husbands just been diagnosed

[Snooze]

Hi everyone….. world was rocked yesterday by my husband’s diagnosis, really wasn’t expecting this. I knew something was wrong but the way he’s been declining did not lead me to here. Not sure what or when will be the next step, unsure do I need to start contacting people and how do I talk to my young adult children. Any advice would be appreciated….

[JamesW]

Hi snooze and really sorry about your husbands diagnosis 😔

Receiving this news is a massive shock for you both and everybody around you. I think the best advice at this stage would be to take things a step at a time and let the news sink in a little if you can. Talking to your children is going to be hard, but maybe that is a good place to start as they will want to know soon especially as they are older.

With regards to next steps, you will receive information from your MND team and you will also be referred to support services like occupational therapy. You can also contact the MNDA directly for help and advice, as well as speaking to us here. Once you do break the news to your love ones, hopefully you’ll find some support there too.

Sending you much love at this difficult time x

[GennyS]

Hi everyone….. world was rocked yesterday by my husband’s diagnosis, really wasn’t expecting this. I knew something was wrong but the way he’s been declining did not lead me to here. Not sure what or when will be the next step, unsure do I need to start contacting people and how do I talk to my young adult children. Any advice would be appreciated….

I'm so sorry about your husbands diagnosis and remember how awful the initial weeks were after such shocking diagnosis. I found the MND association information pack was really helpful. It has all sorts of topics including how to break the news to children. It's written with quotes and contributions from MND sufferers and carers. This forum is also great.

[Snooze]

Thank you for your kind words and advice. I will wait for some guidance to come through and stop running around looking for answers. I’m sure I’ll be back on the forum as it seems to have a lot to offer.

[Arcadian]

Hi Snooze sorry to.read of the diagnosis.
I'd give the MNDA Connect Helpline a call and ask for a couple of copies of the booklet 'Making the most of life with MND' booklet through the post to hand to family and close friends (and any other pamphlets you feel might be appropriate on other aspects).

Unfortunately 'coordinated care' between GP, Hospital, 3rd parties can be variable across the UK, so access to a MND multi-discipline team clinic could be more helpful, but outside your immediate hospital area (GP and existing Neurologist should be able to clarify options).

Various appointments may arise in waves and gaps and at times be overwhelming or vague.

[Snooze]

Yes that’s a great idea, just spoke to GP who said very much the same. Just not used to having such a disconnected system between GP,Specialist and general information needed. Hoping things start to seem clearer and I need to feel I’m doing as much as I can.

[Bowler]

Hi Snooze you need to take a little time to process yesterday’s diagnosis. When you are ready the link below will take you through to some helpful advice on talking with the children.

https://www.mndassociation.org/support-and-information/children-and-young-people/parents-and-guardians/

[Snooze]

Thank you so much I really appreciate the advice and ideas and I think this week I’ll just use the time to process and then face it all next week.

[Ellie]

Snooze A warm welcome to the forum, sorry you’ve had to join us.

I don’t know how old your “young adult” children are but, if they're completely unaware of your partner’s/their dad’s issues and obvious stress in the house, I’m guessing they might not live with you. If they do live with you, chances are they’ve picked up on goings on and put 2 and 2 together – whether they got the correct answer, only they know.

If they don’t and you don’t see them frequently, you have a bit time to get your own head around the diagnosis. Whenever you do tell them, they're old enough to be told the truth (with help from the MNDA website if they're under ~18) and perhaps point them to the main MNDA website as a reputable source of information - they’ll just go online anyway and there is a lot of misinformation returned on an internet search.

Love Ellie (mum to a 19yo and a 21yo) xx

[TinyLady]

Snooze welcome to the forum. I found it hard to know ow to tell my daughters (now 19 and 17). But give yourself time to process things so you can be as calm and informed as possible.

When I did tell my daughters, it was emotional, but not as bad as I feared. They knew things were serious. And once the initial questions and tears were over, we have settled into a lovely relationship where my MND does not pop up often and become the centre of everything, or be an elephant in the room, which is what I feared.

I hope you find support here and wish you much love to navigate this part of it xx

[JoM]

Sorry to hear of your husbands diagnosis Snooze When my partner was diagnosed, he was then left a few weeks to take it all in, then had a visit from our local MND nurse specialist/co-ordinator. She explained how the team worked & from that point on, various appointments & visits happened.
it’s a huge shock (even when you’re half expecting it) & can be overwhelming with all the information you need take in.
Take care x

[KimB]

I have a friend who was just diagnosed after nearly two years of symptoms and seeing many doctors. He has two teens and two under 5. The teens live with his ex-wife and he sees them at least once a month. Of course, they knew something was wrong so he kept them in the loop.

After his diagnosis, he sat them down and talked about his diagnosis and what it meant going forward. Then he gave each of them a personal letter that went into more detail and gave them reassurance that he had a plan in place and that plan meant spending much more time with them. Sadly, he lost his job as a pharmacist at around the same time as he was nearing the end of the diagnostic process.

After the older two read the letters, they had questions and he gave them honest answers.

For the younger ones, he decided that a family counseling session was needed. Prior to that he used age-appropriate language to let them know that Daddy was sick and he would need special equipment to help him live.

I'm so sorry your husband has to deal with all this and I can only imagine how hard it is for you.

It does take time to wrap your head around this type of diagnosis so give yourself time.

For me, I was alone with no family and no real close relatives except a much older brother who had beginning Alzheimer's. We never talked much about my diagnosis because he doesn't do well with talking medical. I turned to friends for emotional support and got some counseling and meds.

I wish you the best.

[Derbyram21]

Hi
Welcome to the forum a place that none of us expected to be on ! As you can see with the comments it's a very supportive forum and there a lot of information. It was difficult telling my children who are older but personally I just came out with it . It's up to the individual though so take your time x

[Snooze]

Thank you for all the advice and comments. My children who hate me saying they are children are 21,23;25 ….not babies I know but still very much at the beginning of everything. My eldest daughter is arriving Saturday and we will talk then and I hope she’ll give me an insight on talking to the other two. Trying to keep life as much as normal for the moment as my husband is well ish, mobile and not focusing on the diagnosis… we talk about it in small bursts and then do or talk about something else as it’s true to say life is going on. I also feel this is his way of dealing and I have to be guided by him. Just feel guilty feeling sorry for myself and open the window of sadness a little then shut it tight. I’ll keep you posted on our next steps xxxx

[Ellie]

Just feel guilty feeling sorry for myself and open the window of sadness a little then shut it tight.

Your whole world has been turned upside down, so there is every reason to feel sorry for yourself, as well as angry, bereft, scared, and the rest... And there is no need whatsover to feel guilty about your feelings, ever, nor to justify them.

Have you someone with whom you can share your feelings - a friend, a counsellor maybe? Your mental wellbeing is very important.

The MND Connect Helpline is a great resource too: click the tab at the top of the page for details.

Plus, of course you will find support on this forum from folk who know exactly what you're going through. xx