Old 10-10-2018, 08:35 PM #1 (permalink)
DadALS
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Default My dad has trouble accepting ALS

Hello! New to the forum.

My dad has ALS. Aged 64. Diagnosed in November 2016. He's lost all ability to swallow and speak, although he continues to try. Can still walk with a mild left foot drop.

We moved to in September after sustaining two devastating hurricanes last fall. He was in fine when we moved. He dropped from 220lbs to under 100lbs and his doctor said he was going to die from being stubborn for resisting the feeding tube. He freaked at imminent death and got the feeding tube in May. He’s back up over 110lbs.

The problem in my state is that assisted living centers cannot do feeding tubes (unless they have the highest level of certification) so we put him in independent living. However, home care aides can not assist with feeding tubes only RNs. Which are pricey. He gets 3 feeds a day and Rizoule 2 times a day on an empty stomach. So that’s 5 trips to feed and medicate him. I found an assistive living person licensed to do tube feedings 25 minutes away and he refuses.

I have a busy home life of my own with a family to raise. Plus, I need to go back to work. I am so angry with him. He squandered so much money running a business that he doesn’t have the means to live the way he wants——independent with people to do the feedings so it’s all on me for now. Which is not sustainable.

And he’s so unreasonable and selfish with his requests and demands. He sends away the home health aides in the morning if they are new because he doesn’t want to deal with the change. He is texting me constantly and questioning my whereabouts.

I have no friends here and no work and no life. And tons of guilt. He needs to go to the assisted living center as he fell last week and had texted me in the middle of the night to come help with the trilogy. He has stated he doesn’t want trach but I am afraid he will freak out again and get it when he can no longer comfortably breathe.

I am trying to get MDs to discuss the process with him but they pawn it off on the next specialist. Primary says the neuro will discuss. Neuro says pulmonary should handle it. Can’t get in to pulmonary until December. He resists everything new until it’s too late, like the feeding tube I am so frustrated and depressed. And the not knowing how long we are planning for and what the next steps are, has me feeling totally overwhelmed.

Sorry for the vent but it did feel good to let all that dirty laundry out.

Last edited by lgelb : 10-10-2018 at 10:51 PM Reason: paras
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Old 10-10-2018, 08:46 PM #2 (permalink)
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Default Re: My husband trouble accepting ALS

Hi DadALS,

Welcome to the forum. I am so sorry you have cause to find yourself here, but you have found the right place.

I have moved your post to its own thread, as it deserves full attention specific to your situation. I am sure multiple caregivers will pipe up with support and advice.
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Old 10-10-2018, 10:57 PM #3 (permalink)
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Default Re: My husband trouble accepting ALS

Who is paying for his aides? If you are paying cash, levels of care are irrelevant -- hire on your own and cut out the middleman $ and needless restrictions. You will find threads here on hiring privately.

If you found an aide and he refuses in favor of your five trips a day, well, you know what you need to do. I don't think your level of care is sustainable, and he probably doesn't, either. You clearly have unresolved issues with him. They are going to come tumbling out of your mouth at some point, not a great future memory, so you need a plan for something else. Do you two speak frankly?

I'm not clear on what you want docs to talk about in re the trach if he doesn't want it? You can only take him at his word unless/until he wavers, in which case you can be ready with videos, visit a real trach patient with him, etc.

Sorry that you are so frustrated and that you find yourself here.

Best,
Laurie
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Old 10-11-2018, 01:41 AM #4 (permalink)
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Default Re: My husband trouble accepting ALS

Sorry you find yourself here DadALS.

Remember that this disease may be affecting his cognition and executive functioning, very likely so. Unless he was always the way you describe, it could well be the case. On top of that, this disease can be quite terrifying for the person whose body is failing a bit more and more every day.

It is very hard, but maybe you can find a way to help him live some quality of life now and make some memories. Is there no way he can live with you so that you can provide easier back up care and pay for help to come in?

What will happen when he is totally dependent?

It used to take around 8 hours a day just to provide the basic care to my husband.

You can read back heaps of information here. Also check out the important threads at the top of the general forum. Then ask away and we will try to help you navigate through. A great thing about here is that we have members who have experienced pretty much all variations of situations, so you can usually get a great range of responses.

I agree, if a vent is not on the cards now, concentrate on daily living and quality of life here and now. Every day is precious.
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Old 10-11-2018, 08:09 AM #5 (permalink)
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Default Re: My husband trouble accepting ALS

Hi and welcome.

My husband was Dx in 07, vented in ‘10. He lives here at home with me, and I am his primary caregiver. I pretty much am 24/7/365. Our children are now adults 31, 24, but my daughter was just ready to turn 13 when he was formerly Dx. We had been trying to find out the issue for 2.5 years prior. Both of my kids pitch in as they can. Currently DD is away at PT school. DS is here 2 afternoons for a couple of hours and on his off day on Friday’s.

I know exactly how hard it is. DH has been bed bound for a few years now, but work was just as tough when he was still getting up and moving around, even while on the vent.

If there is anyway you could bring her into your home and then hire someone from outside to help, it would probably be more cost effective and you would not need to make 5 daily trips.

Being angry with your Dad for things he did or should have done is useless and will only cause you pain after he’s gone. What’s done is done. You need to concentrate on the here and now and what you can do to turn things around.

My parents are in Long Term Care, one in the Memory unit, so I know how much time visiting takes up. Esp when I have a nurse 1 day and my son 1 day, I feel like that is all I do.

Tillie has giving you lots of good info, so I won’t repeat, but feel free to ask away, I will try to answer as I can.

Hugs
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Old 10-11-2018, 09:56 PM #6 (permalink)
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Default Re: My husband trouble accepting ALS

I'm so sorry, DadALS. It is a lot to accept. I understand your anger, but holding onto it is not good for you mentally or physically. Of course, you are welcome to come here and to vent. I am glad that it helped just to get it out. I'm sure it's hard being new to the area. There are some ALS support groups that meet. I hope that you can find a way to forgive. Time is short. He's already lost over 100lbs.

Is it possible he is resisting help because what he wants right now is family? Could you two sit down and talk about it? Is there a way for him to know he has your emotional support, but for you to also have the help that will be needed? Is hospice a possibility? Would that provide more help? I am just thinking out loud. Working together, maybe there is a way for peace to be restored and for both of your needs to be met.

I know the future can be terrifying with this disease. My only remedy has been to try to be ready as soon as possible for whatever is coming. Not that I'm succeeding, but we're giving it our best effort!
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Old 10-13-2018, 08:58 PM #7 (permalink)
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Default Re: My dad has trouble accepting ALS

See if you can find an ALS support group in your area.
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