Today I, along with my dad and brother, accompanied my mom to the Virginia Mason A.L.S. clinic. The idea behind the clinic is that you go to one place and sit, and all the A.L.S. specialists in various disciplines come to you. There was a nurse, the A.L.S.A. patient care coordinator, two respiratory therapists, a speech therapist, a nutritionist, two occupational/physical therapists and a student P.T., a psychiatrist, a doctor specializing in A.L.S., and a neurologist who specializes in A.L.S.
In theory it’s awesome. In practice there’s one huge drawback. Because there are so many people to see, they don’t share notes until the end of the day. Which means they all ask the same questions, since the disciplines with regard to A.L.S. overlap. Here’s an example:
My mom can’t swallow. That obviously impacts her eating, and she has a feeding tube that allows her to get her caloric needs met. But after that, her mouth is still producing saliva which she can’t get rid of. She can choke to death or drown in her own fluids. There are basically two solutions: medication or a suction device. Medication dries the saliva production, but it also dries your eyes. My mom doesn’t want to do this because of previous eye disease that could return if her eyes dry out which they have a tendency to do as a result of that disease. She uses eye drops. The suction device she had but returned after three or four weeks because it is not portable. The doctors have basically said, “put it by your favorite chair and then don’t move.” So her solution has been to carry a handkerchief and dawb the saliva away. It’s portable and doesn’t dry her eyes.
Anyway, about 5 of the folks we met with wanted to put her on medication to stop the saliva. So she’d tell them she didn’t want to do that. The doctors (term used generically, they aren’t all doctors) wouldn’t just say okay, moving on to the next item
. There’s good reason for that. They want to make sure she’s not rejecting medication out of hand simply because she has some sort of fear of medication or other irrational belief that prevents her from enjoying the remaining time she has. But since there isn’t a common chart, and even if there was there wouldn’t be time to share the information between each specialist, we have to go through the whole explanation from the previous paragraph every time.
That’s really tough for someone who can’t talk, and who has to type up the reasons and responses on a speech device. What I can explain in about 30 seconds will take her 4 or 5 minutes. Now, actually a few times I did step in and explain this, after asking mom if I could do the explanation. But it still takes a lot out of her, and there’s always a slightly differently worded well, could you consider it this way
thing from the doctors that my mom needs to answer.
By and large, I’m really impressed with the A.L.S. clinic. Having access to people who know the latest and greatest with regard to A.L.S. treatment is wonderful, even if there’s not a lot of practical results. And it sure beats having to make two trips or worse nine trips to each kind of specialist. But it’s tough on my mom. A.L.S. often causes exaggerated emotional responses, particular laughing and crying, clinically. Add that on top of dealing with a fatal illness that requires major life changes. She’s fatigued and tired and emotionally raw. That’s the base. Then 9 visits one after the other with many of them very pressure filled. It’s been a rough day for my mom.
Watching that is pretty rough for me too. Participating in it takes a huge emotional toll. My mom being unwilling to let me help more is hard. I have some skills as a former manager that could make a lot of her daily life less stressful, without her losing any independence. It would mean living nearer to her most days. She has told me not to do this though. She doesn’t want me to distance myself from my friends, and she wants me in Seattle to take care of my grandparents. Plus, there are other family things tied in to this that make it even more troubling for me.
I really need to see a counselor.
I also need an emotional refuge, and I don’t have it. I’ve got some pieces of it, but not everything. Mentoring is my lifeline. Jason gets my mind off my troubles. And a small group of friends has gone above and beyond to prop me up. But what I don’t have is a tight-knit group of friends who yell out “Norm!” as I go to a familiar place every day. No June Cleaver waiting to hang up my coat either. I know, having such things isn’t actually that common. T.V. isn’t reality. But goddamn it sure is attractive, and I wish I had it right now.
Fuck. I really am a wreck tonight.
I wish there was something I could say, but I don’t know that there is.
So for now I’ll say that I’m sorry you and your mom are going through this Phil. I can’t imagine what that’s like for the both of you.
*hug*
Friday? Merc? I’ll yeah Norm at you if you want, but I do know your name too. I’m pretty good at helping people through really crappy emotional times if you need to talk, hang out, bake cookies, etc. Let me know.
Pie. Not cookies. The secret is pie.
Sounds like I should have given you a call tonight. I was in a desperate need to get out of the house earlier and no one seemed to be around… Wound up at the Merc watching people carve pumpkins and trying to enjoy what will hopefully be my last night as a smoker.
It’s rough watching a loved one go through this. I just had to say goodbye to my grandfather and now my grandmother has been diagnosed with Leukemia and won’t last too long. They are so healthy one day and then something turns. If there’s ever anything I can do, just let me know.
Cookies are good too. My first word was cookie I’m told.
I really need to see a counselor.
Probably, yeah. No question it would help you a lot to have someone to talk to, especially someone with experience in dealing with this sort of thing (not necessarily ALS, but family/caregivers for the very ill).
That said, from the limited LJ view I have, you seem to be aware of your feelings and limitations, you can articulate them, and you are asking for help when you’re really needing it. That puts you far ahead of many people in your similar situation, and in the event you do seek some outside help, you’ll probably be able to make rapid progress.
In the meantime, please continue to let us know if there is anything that we or anyone else can do – even if it’s just to yell “Phil” when you walk in the room.
I wish I had seen this last night.
I’d like to see you. I’ll be in touch as soon as my house guests leave to see what we can plan on.
Love you – hang in there.
Wow, if I have know you were feeling this bad, I would have come over. You tend to be a bit stoic with your pain, so your friends don’t know when to help you until you have a moment like this.
Definitely look into a counselor, and try to reach out more. I know these two things are extremely difficult. You’ll be surprised how many people will be there to help.
i wish i saw this last night…
if you want, give me a call – I can totally do June Cleaver.
let’s arrange something, eh?
That you can. Though, I should point out that you already have a Ward Cleaver.
It’s not so much the one-time thing. It’s the comfort of knowing there is always someone supportive at home.
I think seeing a counselor would be a great idea. (one of the few males who may actually do it ;-D ) You need to put the oxygen mask on yourself, then assist the others around you. So, has any PT or OT done a home safety eval at your mother’s house? It’s nice to get things in place so the are there before you need it, vs ‘oh crap, we need this yesterday’. I know you’ve read books, but some equipment works better for some situations than others, and ideas for the environment may come up that haven’t been covered.
My mom hasn’t wanted one to come in. So far, she’d just prefer to ask questions of the PTs in their offices.
She’s also of the opinion that, for the most part, once she starts losing function, there will be other people around to do the things she can’t. She’d rather not spend the money making modifications that will be only temporary. It took us nearly 6 months to convince her to get an answering machine, for instance. She couldn’t call someone back, so why bother recording messages?
If I were living there, and managing things, I could get her to agree. But I’m not, and she doesn’t want me to, and it gives her more time to be stubborn.
Well, that’s true to a certain extent, but being trapped in a room, not being able to get on/off a toilet, shower, etc is a whole different category. I won’t get on my ‘Fall and Fracture’ soapbox either. Her resistance is obviously a roadblock, and that makes it more difficult for you to help. That’s extra frustrating, but I’m no stranger to resistance to DME. Things you could do is measure doorway widths, particularly the bathroom would be good to note. Finding a store that carries offset hinges could be useful. Does she have a bathtub or shower? Is the bathtub porcelain or fiberglass? Access to the home? Things like buidling a ramp if needed don’t usually happen quickly, and I have a handout for that, as well as for a platform under a recliner/chair, if she doesn’t have a seat lift/electric lift recliner–which Medicare could pay for in part, depending on her insurance. If you desire, you could take pictures of her bathroom, entrance, places she hangs out in the home, and perhaps I could give you some assist of what could be helpful, so when she does need it, it’s already figured out. That’s usually the tough part, when something is suddenly no longer doable. Hang in there!
Medicare won’t pay for anything because she doesn’t qualify for Medicare.
disclaimer of not knowing the insurance situation or your mother’s age, but I have several patients who are younger than 65 who often end up with medicare if they have diseases such as MS, Parkinsons, or some other progressive neuromuscular disease, having to due with early disability. Many insurance companies also follow Medicare guidelines as far as what DME is and isn’t covered, what %, etc. Often conversion of such benefits can take months, but that’s where the MSW could best help you as to what can benefit your mother the most with her present insurance, finances, etc.
I feel for your mother and the things she has to go through. It must be comforting for her to know that her son will do all this for her and help her. Even if she rejects much of the help…. I am sure it brings her comfort at least emotionally.
I wish there were words that could be said to make something better but there are only words of encouragement.
LMWK- My sister has recently been diagnosed with ALS. She is only 42 years old, 3 young children. She lives in Alaska and has been referred to the clinic. It’s such a horrible disease and scares me so much for her and her family. The rest of her family (my other sister and I and our parents) live in Indiana and cannot be with her to help her along the way. I do hope eventually she’ll move back home so that we can help care for her and her children but I seriously doubt she’ll go for it. It was comforting reading your blog, knowing she will be able to receive the treatment and follow up she needs at Virginia Mason. She has been seeing a number of Drs on a weekly basis for more than a year now. She’ll be relieved to see all the specialists in one day.