Mum just diagnosed - do I fly home?

[Mitten]

Hello everyone. Last week I got off a long-haul flight and a few hours later got the heartbreaking news from my mum that she has been diagnosed with MND. Bulbar onset. Normally I live only a couple of hours flight from her but my family (husband and two kids, 2 years and 8 month old baby) are at the moment on the other side of the world with my in-laws for Christmas. There is a 12 hour time difference but I am managing to talk to mum every day. We are devastated, I know everyone here must understand.

I am trying to decide whether to end this trip and go home. I just want to be with my mum at this horrible time, and also I want my children to spend as much time as they can with her while she can still speak, read stories etc. But on the other hand they are only just recovering from severe jet lag, and they spend so little time with this side of the family that I would feel very guilty for stopping the bonding that is happening with them and their other grandparents and uncle - although of course they would understand.

Mum has said that she wanted me to stay and get looked after to build up strength to cope with what's ahead. But in the past couple of days (Christmas) she seems less sure and so am I. Her symptoms have suddenly got worse, with severe fatigue and new leg weakness. I am so afraid of her losing her beautiful voice and would be devastated if it happened while I am away.

We are meant to stay another 3 weeks. Her symptoms started about five months ago with swallowing and slurring. I know bulbar onset is usually aggressive but I don't know what this means. Could she lose her voice in the next three weeks? Should I rush home? Those of you with the disease, if you have adult children and grandchildren, what did you need and want from them?

Thanks for any advice

 

[zoohouse]

I think that if your mother thinks you should stay, then you should. Ask her to record her voice if she can, saying all the things she wants to say. Each case of MND is different in the way it progresses. Is she alone? She may be deteriorating because she is not sleeping well, so anything she can do to aid that would be good. Sleeping with the head of her bed elevated helps, and maybe she should be tested for sleep pane having a bipap machine helps my husband a lot. Also her diet is really important, so if she is letting her anxiety get the better part of her and she is not eating she will weaken. I make my husband a smoothie every morning that has hemp hearts, chia seeds, coconut oil, yogurt, juice and his favorite frozen fruit. Because it is thick it may be easier to swallow. She may also need a feeding tube pretty soon so that she can get adequate nutrition, if she is choking when she eats.
I am sorry that this is happening to your family, but the fact that she has a daughter who obviously loves and supports her is a great thing.
Others with more experience with bulbar symptoms will come on and give you some very sage advise. This is a very supportive forum, and I suggest that your mother joins if she can. My heart goes out to you, and I will add you to my prayers. Try and enjoy your trip if you can, as you have your work cut out for you when you get back.

Paulette

 

[Barbie]

Yes, encourage voice banking--or have her record herself reading children's books for your babies. her voice will not get any better than it is right now. But do you have to rush home--probably not unless she needs moral support. she will not die in the next 3 weeks, and probably will not have any major changes. I would take some time to regroup and grieve the changes that will be happening before starting home. use this time to learn about ALS and bulbar, and think about how you will handle everything that is to come. Does she have someone with her? other family members or your dad? keep talking with her daily--that will give her strength because she is probably reeling from the diagnosis.

You and the littlest could always head home a couple weeks early and your husband and 2 year old could followup on schedule.

It will be very tough for you in the months to come, so please, come here as much as you need. we are always ready to answer questions.

 

[affected]

It is such a hard question to answer.

Bulbar onset is often aggressive, my husband has this also. His slurring started mid last year, and he only had bulbar symptoms until early this year. Now he is very disabled.

Every person progresses so differently however that we just can't tell. If you think you need to be with your mum I think the suggestion that maybe you go to her early with the baby is a good compromise. I guess you have to weigh it up with your mum yourself, and how much support she has there for the next couple of weeks.

I'm so sorry for the diagnosis, we certainly all totally understand and remember clearly that first month or so after receiving it.

 

[TGB1]

My mom was diagnosed with bulbar onset one year ago - and she actually started slurring her words 3 years prior to that. When she was diagnosed we could still understand a lot of what she said - now she is completely unintelligible. She was also having swallowing issues, had started eating softer foods, and got her feeding tube less than a month after she was diagnosed. I don't think you have to run home right now, but is she alone or does she have someone with her? How old is she? My mom is almost 87, and her strength hasn't been affected. She is still walking around with a walker and can do most things for herself. If you can record her voice soon that would probably be a good idea. I wish I had done that with my mom. I am so sorry for this diagnosis and the fact that your children are so young. My son is 14, and I will be forever grateful that my mom was healthy and able to participate in most of his childhood life, and that he will have those memories of her.

 

[Tx Daddy's Girl]

My dad was diagnosed officially in June but we first heard ALS on April 22 and is on hospice now. Dad always said he wouldn't last long and he was right. He went from a twitch in his arm to being barely intelligible and 75% paralysis. I think PALS know their bodies so if she wants you to stay, I would. I was told 2-5 years and I'm not even getting a year.

 

[branrick]

I think my brother might be a rare case but started slowing his speech in late July. By thanksgiving could not talk at all. The following week could not swallow. We lost him Dec 7th. I know every PALS is different but you may not have a lot of time. You just never know. I say go to her now. Pray that God will guide you to make the right decision. Sounds like your kids can see the in-laws for many years to come. Being told 1-1 1/2 yrs with bulbar seems to not be the norm. I'll pray for you right now.

 

[skipper66]

Can you fly home without everyone else after about another week? I personally think 3 weeks is too long to be away from her. She is naturally going to put on a brave front and tell you to stay. Is your dad still living and with her? If she has other family members to support her and think you could stay the whole time. You are in my prayers. Kim

 

[mrvaughan]

Talking as a mother, your mom will feel terrible if you leave the other side of the family to rush to her side. Does she have help where she is? She is probably a little scared. Enjoy your time away, you will have plenty of time to be there and care for her. It is also not bad for your children to remember her as she progresses throughout the disease. They are young and to learn that people that are disabled, or different in some way, is a very good lesson to learn.
Mary

 

[Mitten]

Thank you everyone. She is married, her husband returns to work on the 6th. My brother is there and her two sisters and their partners (all retired). And she has a lot of friends, many retired. She is 65. I will keep talking to her daily. She is doing a bit better now she is learning to manage her energy. Any nutrition tips would be great, that smoothie sounds like a good idea.

 

[Mediasmart]

If I were your mom, I would tell you two things:

1. I would tell you that it is wonderfully comforting to know of your concern and caring BUT,
2. I would much prefer it if you would keep going on your adventure, soak it all in, and tell me about it in detail.

 

[skipper66]

Sounds like she has some help and support so I would stay. In a true emergency you can always jump on a plane home. Enjoy your time with you in-laws and get some rest. You will have alot on your plate when you get back. Hugs to you. Kim

 

[affected]

I'm glad to hear she has lots of support.

It sounds to me like you should learn right now to take one day at a time. Stay there, talk to your mum every day and make your decisions as each day shows or doesn't show anything.

As you have seen by the replies so far, none of us can tell you how long your mum has at any particular stage. That's why one day at a time is more than enough for me!

hugs