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zboy2854

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Hi all,

My mother has what 3 neurologists have suggested is ALS. We haven't had actual EMG tests or other definitive diagnosis, but at this point it seems that there aren't any other things it could be.

About a year ago she started having trouble walking, was tripping/falling, etc. Had knee replacement thinking it was a knee problem, but never recovered from the surgery and rehab wasn't working. Whatever ability she had left to walk or get up out of a chair on her own has long since gone.

About 6 months ago she started progressively losing the use of her arms and hands, and over the past couple of months she has been progressively losing her speech. Her arms are now useless, and every week gets more and more difficult for her to speak or to understand her.

She can still chew, swallow and breathe on her own at this point, but that's about it. Everything else she needs help with.

Fortunately she has a long term care policy, which has allowed her to have aids assisting her in her home 24/7, which has taken a lot of pressure off of me, as an only child and the only person left as a relative. But the aids are getting burned out, not to mention physically exhausted/injured, as my mom is heavy set, and is difficult to move in and out of bed, in and out of the wheelchair, on and off the commode, etc.

To make things worse, my mom tends to be a very harsh and negative person, and so it is also burning out the aids emotionally as well.

She has a living will and has told me she doesn't want to be kept alive artificially (i.e. feeding tube, respirator, etc.).

Right now I'm feeling completely lost as to what to do next. My mom is obviously getting progressively worse, and I don't know what the next step is. As the person who is and will be responsible for my mom and directing her care, I have so many questions, and no idea where to start or what I should be doing now. For instance:

What happens if we can't get aids to come to the house anymore, because it's too hard to move her or deal with her?

How do I communicate with her if and when she completely loses all speech or oral function?

At what point can she no longer be at home and need to be put into hospice or "official" care?

Thanks everyone for listening. Any words of advice or knowledge is greatly appreciated, as I feel like I'm drowning right now.
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
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California
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Los Angeles
Hi, Zach ... so glad you found this forum. You'll find lots of support and good advice here ... but I'm sure sorry you and your mother are having to go through this.

I'd say the first things you need to do are to get a diagnosis of your mother's disease and then contact ALSA ... the ALS Assoc. The neurologists your mother has seen need to rule out other conditions, and perform tests that can help confirm her situation. ALSA will be an incredible resource for you ... they will have advice and can help you map out a program for providing your mom with the care she will need.

I know others will have other suggestions, but I just wanted to say hello ... and welcome you, and wish you the best.

BethU
 

Debbie53

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Lost a loved one
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Colorado
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Greeley
Hello Zach,

Welcome to the forum. I feel for you...I'm pretty new here myself...my father has very similar symptoms to your mother's and we don't have an "official" diagnosis yet either, although we'll be getting the EMG in a couple of weeks. He is in an assisted living center, soon to be in nursing when something becomes available. I can tell you that, in my experience, Hospice is wonderful. My dad's GP ok'd him to get the services, and they have a team who have helped him for the last week or so: a nurse, an aide, a social worker, and a chaplain. It might be different for you, because he has also lost a LOT of weight, and so his diagnosis for now is "adult failure to thrive". I hope you can get some answers and some help soon.
 

zboy2854

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Thanks Beth and Debbie. My mom has a current neurologist, so I'll talk to him this week about what to do next and contact the ALSA. I just know that if and when I have to put my mom into an assisted living or hospice facility, she will go downhill very quickly from there, so it's definitely something I've been hoping to avoid. While she's at home at least she feels safe, has her cats, etc., which I think helps a little bit.

Anyway, thanks for the kind words and advice.
 

msde302

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Jan 5, 2008
Messages
77
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CALS
Country
US
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MN
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St. Paul
Zach-

I'm sorry to hear about your mom's diagnosis. It sounded just like where my mom had been when we finally found out that she had ALS. I had moved back to Minnesota to live with her. When it got to the point that she couldn't feed herself we had a combination of friends and ALS volunteers come to help her. The, when she couldn't be left alone (once her hands totally went and she wasn't able to adjust in the wheelchair) I hired someone to come and be with her during the day. We went through the process for medical assistance and they would have supplied a PCA nearly full time for her. But by the time that was necessary, I was off for the summer (I'm a teacher). We had hospice help for about 9 months, but they only came once each week.

I don't think that I could have brought my mom to a nursing home, although I know that for many people, especially once breathing becomes an issue, it's necessary. My mom used the bi-pap only for the last week or so of her life. She'd lost lots of weight (made worse by the muscle wasting). She elected very early on not to have a PEG tube. I was horrified about what the end of her life would be like. It was not easy, to be sure. She stopped eating almost entirely by the last week of her life, and was only having small sips of a latte or a malt. And while for the last year or so of life, she never slept more than two hours at a time, she spent most of those last two weeks sleeping. And she passed away sometime in the morning while I slept on an air mattress next to her bed.

Some people do better at home. Like you said, it's hard not to think that the decline would be rapid once someone is in a nursing home. But for some, it's the best care and what's absolutely best for the care givers and the person living with ALS.

The ALS Association is a godsend in terms of equipment. And this place has been such a source of hope and help! My mom found it when she was first diagnosed. Maybe it would be a good idea to show this place to your mom, if she's interested. I know I felt so alone when we first found out. At least there's comfort in knowing you're not.
 

SMillheiser

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261
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US
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california
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san juan capistrano
Maybe I Can Help

Zach,

I have know someone who gives direction and guidance to people in your situation. She is one of the foremost profesionals in ALS care. If you are interested in talking with her, let me know. Maybe we can use a grant from my foundation to handle the cost.

Stu
ALS Guardian Angels
[email protected]
 

nspoc

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Mar 24, 2007
Messages
113
Reason
CALS
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US
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Illinois
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Olympia Fields
Hi Zach -

I can see that the emotional turmoil is very pressing and distressing for you and the caregivers.

I have one practical suggestion for her care that might relieve a small portion of the burnout. Your mother needs a hoyer lift right away. Medicare and insurance will pay for a basic hoyer. She could then be put on the commode and into her chair with much less effort.

Sounds like you need LOTS of input for assistive devices to make her care less daunting. I hope the MDA or your clinic can help. But start investigating a lift right away! Beth
 

Flowerpot

Active member
Joined
Aug 28, 2008
Messages
80
Reason
CALS
Country
UK
State
Tyne and Wear
City
Newcastle upon Tyne
Newbie too

Hi Zach

As a newbie I don't have the wealth of knowledge that some of our friends here do - however , I will say there is no hard and fast rule about this disease - the care an individual requires is really that - pertinent to that person.

You need to ensure that you get support yourself - I am very lucky that it is my sister and me in this together with Mum.

Thinking of you

Flowerpot:wink:
 

zboy2854

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Thanks everyone. Stu, I emailed you. Beth, thanks for the recommendation. We've ordered a hoyer lift, so hopefully that will help with moving her.
 

scbridges

New member
Joined
Sep 27, 2008
Messages
3
Reason
CALS
Diagnosis
07/2001
Country
US
State
Arizona
City
Scottsdale
Bed support

Hi. My brother has been bed bound since 2005. Can not move. We recently purchased a Pro Bed... from Canada. The bed turns him and has saved my body and the body of the caregivers. Expensive... $25,000... but will save you if you can afford it or the long term care people will pay for it.

scbridges
 

cynds

New member
Joined
Aug 19, 2008
Messages
7
Reason
PALS
Diagnosis
07/2008
Country
US
State
NY
City
New York
Please help me find a direction

I've been stopping by here for several months and became a member awhile ago. I've known I had ALS since January although I didn't get a definite diagnosis until July. After 2 years of very good and competent doctors trying their best to diagnose my symptoms I started doing my own research, that's how I discovered it. Then it took 6 months to find a neurologist and have testing done.

Getting the diagnosis was good because I was no longer in limbo, wondering what was wrong, wondering why no one else could see how badly my body was failing. Knowing, I thought, was better than not knowing even though the knowledge was terrifying.

It was determined that I had bulbar onset, although the muscle/limb weakness wasn't far behind. I was referred to an ALS center where I expected to have to wait months; I only had to wait 2 weeks. I met my team - neurologist, speech therapist, respiratory therapist, physical therapist, occupational therapist, nutritionist and social worker - and was impressed by one and all. I felt like I finally had a plan and a direction. I felt that after all those long, lost months, I could finally be proactive, working with health care professionals who actually knew what I had and what I could do to improve and prolong my quality - if not my length - of life.

My team appointments are every 3 months, but I expected to be working with individual therapists in between. Instead, I have been writing emails (it is difficult for me to talk on the phone) at least once a week asking for help and guidance from individual members of the team. Asking for referrals to physical therapists that I can see once or twice a week, or a nutritionist I can consult with about my diet so I don't have to have a feeding tube too soon.

Nothing. I get responses, but nothing I can act on. I do have a psychotherapist who is not part of the team who I see at least once a week. That is a blessing. But the rest. I know I'm dying, but I really didn't intend to just lay here and let it happen. I'm just so tired trying to do it all myself - find docs, research and plan treatment, research and plan menus, research and plan exercise, research and plan, research and plan. I'm tired!

I have a support network, including my partner who is the best. He does everything he can for me, but he is working and supporting us financially because my disability hasn't kicked in yet and I haven't been able to work, so he really can't do much more. My family and friends are in touch daily, but they don't live here, so I really was counting on the Center helping me.

One last thing, for full disclosure, I come here quickly to check for a single thing, then run away because it has been just too difficult to spend time here. Now though, I'm just not sure where else to turn.

Please. Please I don't need a pep talk, but I do so desperately need a direction. Can anyone help me?

Cindy
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
Cindy ... I'm so sorry for what you're going through. Have you contacted the ALS Association or Muscular Dystrophy? They helped me enormously in getting going with treatment, etc. I, too, have bulbar onset (diagnosed this May), and making phone calls is a nightmare. I hate it.

I am in touch with my ALS Assoc. rep by e-mail, and she has come out to interview me and loan me equipment for communication.

All this is really overwhelming at first ... but when I was about to give up getting seen at UCLA neuro clinic ... they kept putting me off, and putting me off ... the ALS rep got through to them, and I had an appointment literally the next day.

The people in both organizations are fabulous.

Hang in there,
BethU
 

joelc

Moderator emeritus
Joined
Jul 15, 2006
Messages
2,786
Reason
PALS
Diagnosis
09/2005
Country
CA
State
BC
City
Abbotsford
I can never get used to the prices of some equipment! Someone is going to answer to God one day -- the prices are awful! $25,000 for a bed seems a bit out of line! Check out the website.

www.pro-bed.com
 

brooksea

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Sep 27, 2006
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HM
Cindy,

It is such a travesty that pALS really find themselves all alone in this fight!

I'm very sorry things are becoming so difficult for you and there seems to be no help to be found!

I can only suggest you try to get the Social Worker at the ALS Clinic involved to coordinate care, or, as Beth suggested, the ALSA.
 
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