out of the shadows

[lilac]

In May 2016, after a series of falls and visits to many doctors, my mother was diagnosed with ALS. I've been lurking here, scared to come out and say anything, touched by so many stories here and by the support you all offer one another. I have benefitted indirectly when I was feeling quite alone with all of this. Thank you.

Wasn't sure how to even post anything today (and wonder as I write this if I will again press "delete” so as to stay in hiding...) Anyhow - here I am. I am saddened by the heartache that brings us all here.

Snapshot of where things are now for my mom: she went from cane to walker to rollator to wheelchair-bound in less than 6 months. Now is having a lot of difficulty transferring in and out of the wheelchair. She’s so scared that she (soon) won’t be able to use toilet independently - told me today she'd rather die. She’s stopped taking showers b/c of modesty (refuses assistance unless completely covered) and fear of falling – instead, she just spot-bathes as she's able. She still has use of her hands and some upper body strength but is getting more hunched over.

Her swallowing is okay and she's maintaining her weight. Her voice is increasingly affected (low volume), and her speech, although slurred when she’s tired, is still understandable. Her breathing is taking the biggest hit lately – she has shortness of breath, incredibly weak sneeze/cough, huffs/puffs audibly when moving even slightly. Fortunately, she has been using a bipap every night and during daytime naps; it has both assisted her sleep and drastically reduced daytime drowsiness. Prior to ALS, she contracted pneumonia several years in a row, and so that looms as a huge risk.

I am the only family member living nearby her, so it's pretty intense for me, but I am grateful for this time and wouldn't trade it for anything. I am with her daily and constantly, doing what I can for her. I was feeling angry at my siblings for being so hands-off and sporadic in their visits, but now I just feel more sad that they and Mom don't have the time together they could be having in these precious days.

The anxiety/worry/sadness was feeling like a big rock I’d been forced to swallow but somehow I’ve gotten a bit better at quieting the screaming inside my head so that I can be there for her without the distraction of my own fears. Her courage is inspiring to me, but I often doubt my own. I pray for acceptance and staying within the bounds of the day, not getting ahead of where we are.

In finally posting this today, I was hoping to come out of the shadows here, even if I have so little to offer anyone else.

 

[affected]

Welcome lilac and good on you for coming out of the shadows!

You deserve support, don't worry that you aren't offering support. In fact often we don't know how much telling our fears and problems actually supports someone else as they see they aren't alone, so you may have done a lot for another lurker in the shadows already

We will support you however we can, don't slip back away.

 

[Atsugi]

Lilac, my wife's ALS was also quite rapid.

A standard bath or shower is not absolutely needed. There are many healthy people who only sponge a spot now and then. Watch for sores and fill them with the appropriate ointment as her doctor prescribes.

I have two surprises for you. I can assure you of these because I've been on this forum for six years:
First, you will perform bravely even if you think you can't. You will just do it, and do your best, and it will be a blessing for your mom.

Second, once you're active here, you will find yourself adding a few words of advice or compassion, and your efforts will make a difference in many people's lives, whether you know it or not.

 

[scaredwifetx]

Lilac, I am so happy that you posted. The shadows are a very lonely places. Don't think you have nothing to offer. Every post you make including this one is guaranteed to help someone. I can honestly say that this forum has been a life saver for me and my husband. You deserve all the support you can get. There are a few children of PALS here.

You mothers progression sounds so much like how my Steve has progressed. Your mother will be in good hands and you should be very proud for being by her side. My mother passed almost a year ago from cancer and I cherish the moments I spent with her.

You don't have to post and we will always be here for you. If you need to ask for advice or need to share your feelings...you can count on support.

hugs~

 

[lgelb]

Lilac, welcome and sorry you are here. I'm glad you came out of the shadows -- that's where the sun is, here. And this is not about who offers what, at all.

It sounds like modesty in personal care is a severe issue for your mom and I would talk with her very frankly, because she is unlikely to be independent in that aspect for long. Are you prepared to be her caregiver in those respects? Is she prepared for that? What's the plan if one or both of you can't?

There is also an equipment issue. She will need a Hoyer lift, and you can start the ball rolling with seeing if there is an ALSA loaner, talking with your clinic, etc. If she is hunching over, her upper spine/neck muscles are weak, and she would benefit from a hospital bed if she doesn't have one, that could keep them from collapsing at night, also helping with breathing. She may also need a different head rest and/or additional cushioning for the one she has. Is her chair a manual or power chair? Now that I reread, she may only have the manual. She needs the latter so she can have tilt and recline, as well as head/neck support.

Best,
Laurie

 

[lilac]

Thank you, all, for your replies and warm welcome.

Laurie, to answer your questions...
Yes, the modesty issue is a biggie for her. She allows me to do some things but refuses to allow me to do others (and I'm not sure that I can take on much more), and anyhow, I can't be there 24/7. I have spoken with her frankly about this, and basically begged her to consider increasing her level of care (she is in an assisted care facility - and no, they don't have skilled nursing there) and to accept help from the aides (or I can hire someone in). I fear that it will take some kind of accident to convince her she simply must accept more help. She has so few choices left and it's super-delicate for me to honor her choices at the same time that I see full well what's around the corner.

A PWC is available to her and she's been trained on it, but is resistant to actually using it, preferring the manual WC. As she has lost the strength to get around in the manual WC, she has been open to the aides escorting her outside of her room, which is a big deal for her. I am hopeful that her reliance on them in this regard will help her to be more open to asking their help in other regards (and they are getting to know her and her needs better too), but this remains to be seen. I know that the PWC would be infinitely more comfortable for her, but she doesn't see it. So I've tried to supply cushioning in the manual wheelchair as best I can.

She does not (yet) have a hospital bed, but I did rig up special cushioning as well as a bed rail and this has, so far, been sufficient. I know that she's on borrowed time in being able to get in and out of her bed independently.

I'm going to talk to her pulmonologist about having a cough assist machine at the ready, in case she gets a cold/cough or anything more in the coming weeks of winter.

I have read here about hoyer lifts and realize that that will be a next need/step. I will talk with our clinic so we can be prepared. My mom will freak out to learn that that is a next step because it will mean total dependence on others for her care. And I'm pretty sure that crossing that line will also mean that she will require skilled nursing, which will mean a move from her cozy spot where she's been nicely settled to a nursing home or a move to my home with round-the-clock help. And that means life will be very very different for her and for me. I am really struggling to get my head around it all.

Thank you all again for reading and offering support.

 

[soonerwife]

Lilac, so glad you posted! You are such a blessing to your mother. You will have this time that you are spending with her forever in your memory and heart.

You helped me already. I have read about the screaming in the head several times but I never really understood it until your post. I have that as well. My family members create the screams in my head.

Welcome to the club that no one wants to be part of.... but is wonderful support none the less!

 

[sweetmozart]

Lilac, welcome. Soon after my husband was diagnosed, we got a Toto washlet. To this day, he still uses it and is independent in that regard. The cost was around 700.00 for the last one we got, about two years ago. There are other brands for bidet toilet seats out there.

My husband lost his arms first, so he uses the remote control with his feet. Whatever your mom's situation, make sure to check out the remote control that comes with the toilet seat you choose.

I don't have any suggestions for the shower - that's going to be difficult to do with modesty issues. I agree that you'll have to have a discussion with your mom.

Your mom is lucky to have you!

 

[starente15]

Welcome Lilac.

 

[Narrowminded]

Welcome home Lilac, I am so glad you posted. As the others have aleady said, any post here ends up being a help to someone else, whether that was the intent or not. However, there is no obligation to post.

It is wonderful that you are there for your mom, it is a time you will cherish always.

Hugs,

sue

 

[Lkaibel]

Welcome Lilac. I am sorry your mom's progression is so fast. She has some tough choices to make and that is so difficult for any CALS.

 

[KimT]

I'm sorry you have to be here Lilac but I'm glad you posted. Please post whenever you want and you will get lots of support. Your mom is fortunate to have you.

 

[Erika]

Welcome Lilac. My mom was diagnosed in June 2016 and like your mom, she too has progressed quickly and since before we found out what she had, she would also say she'd rather die than not be able to use the bathroom on her own. When she started to need help with bathing, she'd cover her self with a towel and cry. She didn't want to be a burden and it was embarrassing. It's heartbreaking to see your once strong and independent mother so vulnerable. All I could do really, was hug her and tell her it was my honor to now be the one caring for her the way she cared for me.
My siblings and I worried that the day she couldn't use the bathroom on her own, would be the day she'd start to shut down. But toileting became difficult little by little so it allowed her to ease into accepting the help. It is still uncomfortable for her and feels so bad to have one of us be the ones cleaning her, but we just keep telling her we've been there with our kiddos and it's no big deal. Sometimes she cries, but more often she smiles.
I guess what im trying to say is that things have a way of working out. In time her nurses will have enough of a relationship with her that having them help her will be easier. And you, you just reassure her with your love and treasure this time you have with her.
You've found a fountain of info and support here, as well as many beautiful souls who make this reality a little less scary and lonely.
Big hug to you and your mamma
-Erika

 

[lilac]

I'm still here, hello!

Here's my update....

Well, scratch what I said about her weight being stable, it turns out she’s lost over 20 pounds in 2 months. Tough news. Her doctor wants her to consider a PEG soon. She’s not asking (any) questions about a feeding tube, and just doesn’t seem open to it. It’s her decision, not mine. I’m conflicted about how much to encourage any discussion about it.

Add to that … she got a GI bug this week (which fortunately didn’t include vomiting – that would have scared the heck out of us because of the risk of aspiration). It was a setback, it tired her out to the point where she said to me in a weary moment, “I just want to die”. Indeed she did get weaker and needed more assistance in the bathroom on/off the toilet. While helping her to use a standard handicap accessible bathroom at her doctor’s office, I just couldn’t get her up, and I had to call someone in to assist. Ugh. As a result it’s now clear that she can’t use any bathroom that doesn’t have a commode with handrails (and that, too, is difficult).

Since my last post here, I can report that she is now asking for more hands-on help. Significantly, for the first time, she allowed two aides to give her a sponge bath one day in the past week. They were very sensitive to her modesty. They told her that they wouldn’t have a job if she didn’t ask for help (bless their hearts). I congratulated her on this huge step and she told me “I did it so you wouldn’t feel so worried about this”. Sigh.

(Oh, and yes, she really liked being clean for the first time in a few weeks!).

In other news, her diaphragm is weaker, her respiratory status has declined, FVC is high 20s. Bipap settings have been adjusted and cough assist is on order. Her doctor says a bronchitis or pneumonia would be "disastrous".

I have broached advance directives/living will questions with her many times, and she always glazes over and just can’t seem to commit to any decisions. I recently found the “Five Wishes” document on the agingwithdignity.org site, a document that is so much more understandable, humane, and tender (check it out if you’re not familiar with it) than the standard and clinical “medical orders for sustaining life” checklist. We read through the Five Wishes together and had some good discussion about it all. But what happens is that when it comes to making any choices, she wanders off into all these hypotheticals, and once pandora’s box is opened, all decisions get postponed, papers unsigned. She says that without a doubt she wants me to be her health proxy, but even that is not yet in writing!

I asked her to please, please, just make some decisions at least verbally, but hopefully also in writing, so that I can know (and eventually carry out) HER choices. Finally, I asked her to do it for me, if not for herself. Now I’m asking the nursing director at her facility to discuss this with her too (perhaps she’ll be more comfortable completing these documents with someone other than me).

I would welcome any advice from you. I am just envisioning so many terrible scenarios in which I will be put on the spot, or in which medical professionals will take all kinds of excessive life-saving measures, because she has not made her own choices. Am I out of line in wanting her to make these decisions? Is it unfair/unnecessary to push her on this?

 

[lgelb]

I'm sorry to hear of her progression. You are not out of line. Since she seems willing to entertain the notion of making you happy, tell her your fears as you told us. Use "I," not "you," as in "it will be so much easier for me if there is something in writing saying I can make decisions if you can't. Otherwise, I might have to watch someone else make them." You get the idea. The idea of getting the director involved is good, too. Try a little each day.