My mother has ALS

[aryakangler]

Hello.

My mother woke up with speech issues in March 2014. She various doctors for a few months, and eventually was given a stroke diagnosis. By November her speech was so limited, I couldn't understand her on the phone anymore, and requested she move closer to me. At the beginning of March she arrived, and by May had purchased a home. With the stroke diagnosis, she was going to PT, OT, etc,. She kept getting worse, and I had her see a neurologist in June. On the initial visit he said this was not a stroke, and informed us of ALS. She had 2 MRIs and a EMG and at the beginning of August the neurologist said this was ALS, and not a stroke.

She has become extremely depressed. In February of this year she was still driving, and now she can't take a step. We use a transport chair to get from the bed to the table, from the table to the bathroom, and then back to bed. Tonight marked the first time she said she just wanted to die. I don't know what to do. I've tried to do everything I can to make her happy, but nothing works. She wants to get out, but doesn't have the energy. Other than a nurse once a week for 2 hours, I am the only one providing care. I feel terrible that I can't do enough. I am a part time college student, full time employee, husband, and father. I haven't slept in my own house for over a month. I wake up, get her to the bathroom, feed her, then get her back in bed. Rush home to shower, say hi to my wife and child, and sometimes do a thing or two around the house. Within 2 hours I'm heading back to her house for another bathroom, food, bed session. This basically continues everyday. I've told my boss I can't come to work anymore.

She receives SSDI, and I have submitted the paperwork for Medicare. Currently she has private insurance. Her budget has no room for a nurse anymore than once a week, for 2 hours. Even then, she can't communicate with them so I have to help translate. I've had the local ALS chapter out to visit her, and they have been of some assistance. I realized I haven't even hung out with her in the last month. I just don't have the time.

Any suggestions?

 

[GregK]

You've come to the right place. Your fellow CALS (caregiver for persons with ALS) will chip in soon.

Your first stop should be the Sticky topics at the top of the General Discussion forum.

 

[Atsugi]

ARYAKANGLER, welcome. We fully understand what you're going through. Caring for a Person with ALS (a PALS) is an incredibly demanding 24/7 job.

It appears that your situation is particularly tough. Your marriage and your own family are impacted. Your sleep (and safety in traffic) are effected. To start with, I have a few bits of generic advice:

Be sure to take care of your health, diet and sleep. It does no one any good if you burn out. Don't try to tough it out, you need to take care of your own body and psyche.

Work with your company's HR to protect your job under the Family Medical Leave Act.

You are your mother's only caregiver, yes? She no longer has her husband? Consider the option to place her in an assisted living facility that is trained to deal with ALS. At least look into it, so you understand it.

You're already highly focused on your mom. But don't forget that CALS (you) should always plan for the survivors (you and your family). As much as you love your mother, you need to limit the damage done by the disease. It's destroying one life, and you need to ensure it doesn't destroy more than that.

Also, be aware that it's easy to fall into the trap of making all the decisions for our PALS, especially if they are depressed and don't make decisions, or if they make decisions we disagree with. I recommend giving the PALS (your mom) her choices. This is her final stand so she gets to make the decisions that affect her treatment and her life.

And as Greg said, you should look at the sticky posts stuck to the top of the General Discussion Forum (as if you don't have enough to do!)

More people will chime in here in the morning and share what they've learned. We'll all do everything we can to help. --Mike

 

[aryakangler]

Thanks for the responses. My mother is single. I am the only caretaker. My employer employs less than 50 people and therefore I have no protection under FMLA. We've discussed assisted living, and she absolutely doesn't want to go. I can't bring myself to force her. I have seen an Elder Law attorney and have gotten her estate in order. She has very limited assets so it was pretty simple. Although I got POA, I have yet to use it because I am allowing her to make the decisions. There are things I would like to do to provide her more care, but she doesn't feel it is a good use of her assets. Mainly, I would like to withdraw her IRA and use it for more in home care. She doesn't agree, and I don't understand her logic. A friend told me I needed to anyway, but I couldn't live with myself if she passes angry at me. I encouraged a feeding tube and she was offended. I have fallen into a system of just doing whatever she would like in hopes of making her happy. I skimmed most of the sticky threads too. She made it 3 days on rilutek, but the dizziness was too intense. She can't hardly swallow, and its a struggle to even get her to take Nudexta and thyroid,diabetes, etc,. medication. She is down 60lbs since May.

The ready to die comments have devastated me. I am second guessing every decision i've made. A friend said she might be angry with me, but she will still love me. I agree, but why upset her if I can't cure her? From the reading i've done the disease is very rapid for her. She was driving 6 months ago, and a single step now takes 2-3 minutes and she'll break a sweat.

 

[Atsugi]

Yes, it seems the disease is rapid for her. My wife lived only 8 months after her first symptom, a foot drop. My wife was a doctor for 20 years, and we were a family with young teens. She decided she didn't want to live trapped in a paralyzed body, kept alive by tubes. So we surrounded her with love, and she passed quickly and quietly.

This disease takes away our PALS choices. She can't choose to walk, and eventually won't even be able to choose to breathe. But you can support her in her choices even if you disagree. She might want her IRA to pass through her Last Will instead of being spent on her last days. (I'm just guessing.)

It's understandable that the "ready to die" comments are upsetting you. But consider her view. She has had many years to think about her passing. Now it's really happening and she might want to leave some inheritance. She might be thinking that she doesn't want to be a burden. You're right that it makes no sense to upset her. The disease is a tortuous one. In my own humble opinion, which you can certainly take or not, is that our job as CALS is to give our loved ones as much happiness as possible in their last days. I'm thinking that we do well if we help them have the least torture in their lives, and the most peaceful death possible.

You're in a tough place. I'm sorry. You're being strong, and taking on a huge burden. No doubt your family (kids?) is missing you, too. You're taking a chance with your job. On top of all this talk of dying, you also have to consider the well being of the survivors. It's a miracle that we come out of this experience with our sanity.

 

[aryakangler]

She didn't want to be kept alive by machines or fed through a tube, but she also didn't want to be in pain and agony. I don't know how to make things more peaceful for her. She wakes up crying of thirst, but getting a drink chokes her and causes panic and pain. I am trying to surround her with love, but I think the torture is overshadowing it. I appreciate your opinion, and it reconfirms my resolve to continue doing whatever she requests. I just can't help but feel I am not doing enough. Or not doing it right.

 

[affected]

So sorry to welcome you here

Can you bring her into your home and get hospice involved so they can use medications to keep her comfortable and you can all be together?

It's very tough. My husband was rapid progression bulbar onset and was gone 11 months after diagnosis. He made many decisions I felt were poor ones but I also did not wish to take what few choices he had from him.

 

[aryakangler]

She won't come to my home. I have suggested hospice and the palliative care they offer but she seems to feel hospice is for people much older than her or with a different condition? She is 57. It is so hard for her to communicate, especially once she starts crying. I don't know exactly all her feelings, but I understand she doesn't want to leave her home.

 

[affected]

Very hard situation

My husband was only 55 when he passed.

The palliative care in Australia was critical for us.

Maybe you could set up some appointments with the clinic or with a hospice if you research what is available in your area so they can explain their role to her.

I wish there were easy answers!

 

[Atsugi]

Aryakangler, considering where she is in the progression, palliative care experts are what you need. Don't use the word hospice--it is emotionally loaded for many people.

Hospice can come to her home. And during "crisis care," they can be with her 24/7.

Crying interferes with breathing and tires them out. Perhaps an anti-depressant could help. You really need the assistance of a wise doctor here to help her understand the benefits of palliative care. Most medical people are dedicated to keeping a body alive and that can be physically very uncomfortable for a person when their body is trying to shut down. But palliative care medics are dedicated to relieving the pain, discomfort and fear she'll feel in the next few months.

I personally feel it would be a good thing for you to get a handle on her life expectancy. We kept my PALS spirits up by agreeing with her that she could live a long life, but I knew from private conversations with specialists that she would be gone within months. This way, I could brief nurses on what to do.

We fed my wife applesauce with medication crushed into it. After she couldn't swallow, we just gave her a dropper of Coca Cola to keep her mouth from drying out.

Your mom might want a PEG tube for feeding, or not. If not, then her nutrition will suffer until her organs start to shut down.

I suggest opening a new thread in the General Discussion subforum so everybody will see this conversation and chime in. There are some things to know about hydration and ALS, breathing and morphine. You've probably already been made aware of the reason we don't use oxygen on PALS and how CO2 builds up, yes?

--Mike

 

[aryakangler]

I tried to explain palliative care today without using "hospice" and she is not interested. The mere mention of it caused a crying episode. She has been taking medication with applesauce for months, but refused all day today. She has decided not take any of her medication anymore. I can't bring myself to debate with her about why she should. I'm honestly lost out in the hayfield at this point. I'm alone, and nothing I can do seems to help.

I'm not sure if it's the lack of Nudexta, or my emotional state, but she hasn't been able to convey a message to me today. Every conversation starts with me trying to understand, and ends with us both crying. I am trying to be strong, but I can't help but cry with her. She was prescribed Zoloft, but wont take it because it is an anti-depressant. From what I understand it takes some time for it to build up in the blood anyways.

I just want to make her happy but its proving to be impossible. I'm not strong enough.

 

[Atsugi]

Well, maybe someone else wiser than me will come along with a silver bullet.
Do you think she's facing the end soon? How well does she breathe?

My only suggestions at this point are:

1. You can't force a fully grown competent woman to accept medical care. Nor should you try. We don't understand her choices, but we're not in her shoes either.

2. You still have a duty to yourself and your own family. Take care of home. Take care of work. Don't let this disease unduly impact your life, too. And while you're at it, I suggest talking weekly with a therapist. It helped me a lot.

 

[affected]

From what I'm reading you need professional help in there for you both.

As Mike says she has the right to her choices, but you also have a family and are not coping so you need help. If you won't bring health professionals in to sort out how you will both cope with all this then I am totally out of ideas.

 

[aryakangler]

I truly appreciate the responses, and I hope I haven't come across as dismissive. I do need professional help. I just don't know how to get it. I feel everything I've tried causes my mother stress. I am trying to make the best decisions possible.

My issue is, at what point do I say, "Mom I'm sorry this upsets you, but x needs to happen". Or "Mom, I'm sorry but y is coming over to see you even though you've requested not to see them". Maybe I am worrying too much about keeping her from crying when I need to come to terms with she will cry, because it is devastating and tortuous.

Again, I am desperately trying to find a solution and respect the opinions that have been laid out. I'm in no way trying to be argumentative.

 

[Atsugi]

I feel for you, I really do. And I'm sure you're not being dismissive or argumentative. Don't worry about that.

We're really out of my field now. Perhaps there's an answer that requires a good understanding of people, but I'm an idiot when it comes to interpersonal relationships.

My advice now is to seek the counsel of a professional therapist, a psychologist, or even a psychiatrist (they cost more, but they have an MD and would have more experience with serious diseases).

If I understand correctly, your mother is totally dependent upon you to feed her, but frankly you might lose your job and maybe your house and wife if you don't attend to them, yes? This is untenable.

I've had "good" deaths and bad deaths in my family. When the person planned and made arrangements, they had a quiet dignified death according to their wishes. Then there was my mother:

My mother had heart problems for several years and lived alone. But she refused to make any final arrangements. She wouldn't allow conversation about such things. But she also didn't take care of herself. She would forget to eat and drink, and then fall down and have to be rushed to the ER, where they would hydrate her, keep her 3 days, and send her to a temporary nursing facility awaiting a relative to take her home. So I would fly 3000 miles, take her to her house, stay with her a few days, and hire a nurse to look after her. Every time, mom would fire the nurse quickly. Then she would forget to eat and drink and we would repeat the whole scenario again. This happened a half-dozen times over a year.

Finally my sister saw a lawyer, and a judge ordered mom committed against her will to an assisted living facility. (I have no idea how they physically got my mom from her house to the facility, but it must have involved a lot of yelling.) Once there, she hated it, cursed at us and tried to escape the facility but she soon became wheelchair bound. She stayed there six months. Finally she became bed-bound. Then she died alone. It was all very sad.

We want to avoid the crying and yelling, but sometimes just can't.

You might consider speaking to an eldercare attorney and to her PCP.