mnd nurse

[rocmg]

hi all... i wanted to ask you a question about early ALS and health care professionals.

The MND nurse for our district visited me and mum the other day and really upset us, perhaps not intentionally, but she did nevertheless. The way she delivered the information about MND was rather brash, matter-of-fact, and yes, a little patronizing. It's one thing reading it on the internet, but to hear someone say it out loud and echo round the room, is different sensation. My mum has worked with severely disabled people for over ten years, and was a caregiver to her own mum who died from cancer. She knows the score, and she knows about the final stages of the disease.

I just don't know how beneficial it is to spell out to mum what she can expect to experience over the next few years. The nurse had a little plastic tube in a bag (I assume it was a PEG?) and also some leaflets which read on the front, " Life with MND may be short -- But it's still worth living!"

I know these people are doing their jobs, but it seemed a bit over the top. I know anticipating the next step is part of care in MND, but is it really necessary to do it immediately? Doesn't it make sense to discuss PEGs when the nurse has assessed a swallowing difficulty, wheelchairs when mum has imbalance/weakness walking etc?

I know there's no good way to break bad news, but it seemed counterproductive to mum's current state to shake her up like that -- especially when there's no way of telling if mum will need a PEG next week or next year.

 

[brooksea]

Gosh! I'm so very sorry you and your mum had to go through such trauma! I mean y'all are just a month into this as far as diagnosed and I believe that was very unnecessary!

If that had been me, I would have been a blubbering fool by the time she was done! We were already non-stop crying when given the news. That's like rubbing your nose in it!

I think I would have to have a talk with her superior to see if they could learn some sensitivity and compassion.

 

[rocmg]

jimercat... your reply has given me a little sense of relief! i'm glad that does not sound like normal protocol. she explained none of our options, and when i mentioned clinical trials she actually seemed a little annoyed with me. i just got the feeling that she was saying 'it's all downhill from here -- there's no cure so don't bother trying.'

she also said, and i quote, "there's never more than 100 people with MND in Northern Ireland at any one time. It's not like you've got MS or even Parkinsons. You've got a very rare disease -- I know it doesn't help to be told you're one of the rare ones."

I just had to write the whole day off as a bad one. That was Thursday, and mum is still really upset about it.

 

[joelc]

And I thought I was the only one with an experience like that!

I am so sorry they found it necessary to do that to you!

I had the same happen to me immediately upon my diagnosed. When I would not discuss how I was going to die they told me I was in denial and went after my wife! Thanks!

Then I had a few words to say to them about the way they were approaching this. They did not realize I had a Masters degree in Councelling. LoL

I am now over 2 years past dead and we are extremely good friends!

Go at your own pace and don't believe everything they say! They mean well but sometimes their delivery stinks!

 

[rocmg]

Goodness! I find some small consolation in the fact that she's obviously just not the sensitive type. it was getting kind of frustrating -- the occupational therapist was going to come out and assess our home for space for a wheelchair. i thanked her, but told her not to bother and took her phone number. the physical therapist was much better -- she tested mum's strength and said she'd call us again in 6 months, but we could speak to her sooner if we felt it was necessary.

i'm glad you have since made friends with your abrupt nurse, joel! there is hope for us... but i will definitely be wary of letting that woman near mum ever again!

 

[joelc]

I am an extremely forgiving person....LOL.

 

[rocmg]

hahaha! i'm glad, for the nurses sake at least!

 

[BethU]

I agree absolutely ... especially with that "Life may be short" thing. I felt overwhelmed by too much information after my diagnosed. Health care professionals don't understand that patients have to PROCESS this whole thing emotionally and psychologically, and nobody can take it in all at once. And there's no reason why they should have to ....

I think the patient is the one who should set the pace. As we get into our situation, we discover for ourselves that ... yes ... we can LIVE with ALS, and we start seeking out information on how to handle the problems that will arise.

 

[brooksea]

Beth,

What you said was very interesting..."we start seeking out information on how to handle the problems that will arise." And now that we have Ms. Google, we can pretty much inform for ourselves. Thank God Al Gore invented the internet! (sorry, sometimes I can't resist!)

 

[joelc]

Al Gore invented the internet!

Enlighten me........ I am not familiar with this joke.

Thanks

 

[brooksea]

2000 campaign for US pres. -

Al Gore said: "During my service in the United States Congress, I took the initiative in creating the Internet." Bush took that and ran with it! To be fair, Gore did pass legislation to help get the web going.

It's a joke that really hasn't died here in the states.

 

[rocmg]

praise be for the Internet!

 

[joelc]

Thanks for the explanation.

The TC/IP protocol was developed by the US military in 1958, so technically that is how old the internet really is but was made available to the public in the 1980's. I had never heard that he took credit for it.

 

[Felicia38]

I have learned something new again today. I didn't know the internet was that old.

 

[mndireland]

I dont know why the nurse was soo insensitive! We didnt have that problem, but then in the beginning we didnt get in touch with any associations and mum didnt want to talk to anybody who called to the house. Unfortunately this might not have been such a good idea! We only got advised about equipment after we started needing it. Now, as mum refused peg, and we didnt have a lot of time to talk her round, its too late for peg and the choking and swallowing is sooo bad, she only gets nutrition drinks and yogurts mainly, even water or drinks cause choking, its awful. I think if we had more time to talk about peg, and explaining you can eat while having it, she could have been convinced. It took a long time to get her used to being in a wheelchair and hosp bed.
Now we have a hoist at home, so far she hasnt used it, only with the OT, but while its sitting there and everyone is commenting on it saying they are great etc she is slowly getting used to it, and knows her day is coming that she'll have to use it.

Sorry the nurse was abrupt, and it was insensitive of her, but I think it can only benefit from knowing everything at the start. I dont know how many times ive had to ring the hospital and nurse, and asked them about something ive read here, as we werent told about it. Soooo frustrating!