Stubborn Dad

[Steele]

Hi everyone,
My 66 year old Dad was diagnosed in April but has been declining for some time. It started with him losing weight for no reason. Separately, as far as we've been told, he has back and neck pain and over the past few years his posture has decline to very hunched over. His voice is depleted and a struggle. He gets winded if he says a full sentance. His hands are getting very weak. He can still walk but is exhausted for a day or two if he walks to his truck, then to the coffee shop and returns. He sleeps a lot now. His breathing is laboured - his chest heaves. He gets really fast breathing when he walks to the bathroom.

Anyway. He's on a bipap at night (removes it after a few hours though), does his cough assist most mornings and evenings. He's been told he needs to get a feeding tibe asap, as its bordering on unsafe for surgery. But. Overall he doesnt get it. Maybe hes still in hardcore denial but he just doesnt foresee whats coming at all. Apparentlu the dr didnt explain the details to him but did say ALS is progressive with no cure. He asks things like How long will i need the breathing machine till my lungs work better? Or How long will i need a feeding tube? Or I just need to get figure out how to get stronger....

It's heartbreaking.

The idea of a wheelchair is a massive NO to him right now. The feeding tube has been refused. Any additional helpful items are not in his realm of 'gonna happen'. He wont go get retested for his drivers license. Any tips for how to approach this stuff with him without pointing out all the crappiest parts of ALS? Hats off to you all for going through this terrible disease in whatever way you are. What a horrible club to be a part of...

 

[WendyWooG]

Hi Steele
So sorry about your dads diagnosis. Giving in to using equipment is a difficult one for a lot of us. I would advise getting things in early just in case. Tuck them out of sight by all means but equipment supply takes time and there is nothing worse than being stuck without options. Say to him he doesn't have to use it if he doesn't want to but having it there just in case would give you peace of mind.

My attitude has always been that the equipment is helping me gain freedom. Every time this disease takes something away I am looking for ways to get it back so I will grab any help I can. I want to make the most of any time I have and I don't want to totally exhaust my CALS.

Wendy

 

[soonerwife]

So sorry to hear about your dad's dx. My PALS is my husband and he is a very stubborn one... He won't use any assistive devices until absolutely necessary. Although he understand what ALS was before he was diagnosed. He had a friend who had it.

I wish I had some great advice on how to help your dad accept these devices.

 

[swalker]

I am so sorry to welcome you here.

I understand being stubborn and being in denial. I sure was. My doctor talked to me about a wheelchair for a year before I finally started the process of getting one. I had numerous serious falls with broken bones, etc.

Perhaps it would be helpful for you or your father to review some of my posts that describe how the wheelchair has made such a positive difference in my life.

Getting a wheelchair does not mean he is committed to using it 100% of the time. He can choose when he wants to use it to conserve energy or to do something that would otherwise be impossible (like my 10 to 15 mile excursions to see the sights around here).

Steve

 

[lgelb]

In re the feeding tube, that can be done in interventional radiology instead of surgery, at very low lung function levels. So he has some time to think. [Meanwhile, you might look into local IR departments.) You can position it as pure comfort vs. trying to swallow, and can be used or not at his discretion. It is all about preserving some semblance of control.

He does need to know [from you if the doc wasn't clear or he wasn't ready to hear it] that this is a progressive disease that does not get better. It's not something I would say every day, but it does bear saying occasionally, to help him plan.

Let me know if you want help tweaking the BiPAP settings. If set properly and he is tired, and with a proper hospital bed/pain control meds it should afford him a full night's sleep such that he doesn't wake up and remove it. It sounds like he should also be on it during at least part of the day -- if you can get him to try it when his breathing is most difficult, that may help him see the benefit of that.

Best,
Laurie

 

[Firefighter58]

The Peg is the best thing that I have done in my fight with ALS. I used to all most drowned every night when I tried to swallow my fowl tasting meds, now I take them twice a day with no problem,this morning the whole thing took about two minutes, with no discomfort.
Al

 

[gooseberry]

You can have your canadian als social worker rep help in explaining the disease to your dad. That way, you will not have difficulty between you if he is upset. Chances are, he knows the deal and wants to live in denial.