Hospice & mom update & me update

Tomorrow the family will be meeting together with some of the folks from a local hospice. Meet and greet mostly. Not sure if we’ll be making any definite plans at the meeting. The idea is for the family to get comfortable with the hospice and learn what they do. I read up a ton a year ago, so I don’t think I’ll be surprised by any of their services.

After having accompanied my mom on a number of visits to health care professionals, I’m really un-enamored of the field generally. Most have had a pretty poor bedside manner, despite good intentions. I’m including all operating issues except for the actual medical care in that category. Poor one-on-one communication. Poor follow through. Etc. And it seems like both my mom and I are more knowledgeable on the issues than a number of the ones we’ve seen.

The ones with the worst manner were the folks at the ALS clinic at Virginia Mason, who are also the most knowledgeable. The visits there were stressful for many reasons. There really aren’t any ALS specialists in any field up here.

I do want to publicly note a couple of really helpful folks up here. Dr. Dana Petersen at Lynden Family Medicine, although a general practitioner not knowledgeable about ALS, has done a bang up job getting at least to the level of information my mom knows, and he always takes the extra time to walk us through the pros and cons of the alternatives.

And Tim (can’t remember his last name) at Cascade Prosthetics in Ferndale has been wonderful, patient, and knowledgeable. He’s doing the brace that my mom wears to keep her head up. She can’t make her neck muscles do that anymore. He doesn’t know ALS specifically, but has about a billion ideas to try. I had done some research online into possible braces. I wasn’t too hopeful on any of them, and neither was he. But I didn’t want to leave any stone unturned. He brought out samples of those just to ease my mind. The brace my mom is using is made of plastic, but it is too pliable to hold mom’s head up very far. So he had a technician at their shop add aluminum bracing to it, and it seems to be working so far.

Anyway, that’s a bit of a digression. The point being that all the others have left me a little disappointed at least. So I really really want to meet the hospice folks, because they will be the most important professionals in the final six months. I’m hoping not to be disappointed but scared I will.

Normally, hospice steps in during the last six months. That may not be right now. It may be soon though. At this point it’s too early to tell. Mom cannot eat, drink, or talk. She can’t hold her head up. Her right hand is nearly useless though her right arm still has some function. She’s got some deterioration in the left arm and hand, but that is at least a few months behind the right in progression. That’s actually a bit on the encouraging sign to me. If it doesn’t strike both limbs at the same time, it means consecutive, which means more time in my head. She hasn’t really lost any use of her legs. What is most worrisome to me is she is having more trouble breathing (particularly exhaling). That’s what kills most ALS patients. Whether her breathing problems are the start of the ALS progression in that area, or something else, we don’t know.

I have mixed feelings on all this. I really don’t want her to die. Duh. But given that it’s going to happen as a result of ALS, at some point I want it to go quick. There’s some serious suckage involved with ALS. ALS is not a quick thing, even in the fastest cases. This is not like when Matt died, which was instantaneous. ALS is relatively, though not completely, painless. That’s about the only good part of it. You go progressively more paralyzed. Just as soon as you get things figured out at one stage, you have to redo everything. I don’t remember if I posted this, but my sister is pregnant. I’m hoping that mom lives long enough to be able to hold the kiddo. Due date is in September. Not sure when it’s realistic for him/her to travel to visit. I know that would mean a ton to her to hold him. I just hope it doesn’t suck too much along the way. My mom can, already has, handled a lot.

As for me, you can tell by reading this that I have some really serious grief issues going on. I’m depressed. I’m losing myself in books and light banter with the folks at the Black Drop, an awesome Bellingham coffee shop. All my friends have been awesome. I can’t thank you all enough.

I really wish I had a girl to curl up with who would just tell me everything is going to be okay. There’s been the opportunity, but it was just too hard for me to open up and be vulnerable with women I don’t have with whom I don’t have that existing relationship. (No, I’m not gonna make the grammar in that sentence make more sense.)

I’ve also kind of foregone much contact with all but the closest of friends when I’m in Seattle. That’s been hard, but it’s harder to deal with constantly repeating what’s going on with my mom. I don’t mind telling people, though if I did it might make this all easier. But I hate the repetition. I hate when people argue with me or give me advice I’ve already rejected. Jason says I should just say doing fine and move on cause people really don’t want to know, don’t know how to talk, and really just want that answer anyway. It’s not really my nature though to make okay when I’m not. I may try it his way yet.

My close friends know me well enough to handle me pretty well, so I’ve been sticking to them. Though even then sometimes things aren’t all rosey. I want to yell at them Do I have to explain exactly what I need? Can’t you just know? Which would be bad. There’d be hard feelings. Plus, part of the reason I want people to know exactly what I need is that I really don’t know myself. Really though, these folks have been great. I’m just fucked up.

Things I need to do; can’t say I’ll actually do them though:

  • Try out social activities here.
  • Find a counselor here.
  • Get some exercise.

So yeah, that’s the dump. Doing about as well as can be expected given the situation and the shit I’m not doing that I should.

I love you Joe and Sara.
I love you Deirdre.
I love you Erin.
I love you Kim.
I love you Jason.

I love you mom.

As Stan Lee wrote, ’nuff said. (Hah!)

13 thoughts on “Hospice & mom update & me update”

  1. Thank you for sharing this. I have no sage words for what you’re dealing with, but wanted you to know that I hear and I care. (And that I’m not just here for the boot links.)

  2. I am sorry you had bad experiences with medical professionals, but I know a ton that I personally work with, in many fields, that do have good bedside manner, so perhaps give new people a chance and know that the people you met do not represent all of us in the entire field. Communication also depends on how the providers communicate, is there a central/computer system that tracks care, interventions, appts, etc. Also, with hospice, you can be accepted into the program with a MD saying you have a prognosis of 6 months or less. In my experience, most ALS patients are admitted, whether they ‘technically’ have 6 months or perhaps more time, as is is an unpredictable disease, with the focus more of what your mother/family wants to do as far as intervention when certain situations arise. (ie-antibiotics for comfort care vs life prolonging, choice of going to the hospital to sustain life) You don’t get kicked out if you live longer than 6 months. Hospice can provide more support in the home, DME is covered at a higher rate if not 100%, and from what I have seen, the sooner you can get this service, the better. You can work with the team to get what is needed, how much is needed, with the convenience of people coming to you vs going to all the appointments. You might also experience better care coordination overall. I know that it is hard to ‘accept hospice’ but I wish people would see it for all it’s benefits and not feel like the program itself decreases life expectancy. There, my unsolicited 2 cents.

  3. Accepting hospice won’t be a problem. Accepting this particular provider might be. We’ll see tomorrow.

  4. This was a great post, thank you. I know it may not make much sense but I kind of feel like hearing about my friends dealing with these things is good prep for when I will (likely) have to deal with it. And you’re really … I don’t know what to say, but I’m really proud of you. I’m sorry there’s no girlie to hug and love you but you probably wouldn’t have a lot of bandwidth for her right now – you’ve got a lot on your mind.

    Sorry I can’t come up to visit you and tell you stupid things and play games and make you forget about life for an hour or two. (Suggestion of the day: there’s nice places to kayak up where you are, you might enjoy getting out on the water now and then.)

  5. I can tell you a few places I’ve kayaked near where you are – Anacortes and just right off the shore near … er, the scenic drive place. Chuckanut? I saw petrified palm trees. (And I took classes here.) Kayaking was really a good way for me to get away from stress – I was overwhemled with information and forced to pay so much attention to my body I just couldn’t think of much else.

    Second suggestion: add , who’s had to deal with getting her senile dad into a hospice, with him fighting all the way. It’s been another great case of grace under pressure (and also what I’m “looking forward to” in either another ten years or, who knows, two). Tell her I sent you. She writes funny stuff, too.

  6. I never know what to say as I’m terrible with this stuff, but your family is in my thoughts a lot. Thanks for updating–I wish your mom well.

  7. Congratulations on the new niece/nephew you’ll soon have. That’s wonderful news. I hope your mom will be around, and in reasonably good health, to meet the baby.

  8. you should call me or something when you’re in the neighborhood. we need to do lunch or something.

    i’d like to come visit your ma and pa sometime soon, if that’s alright. let me know when would be good, and i can schedule it in. 🙂 i should still take your mom up on the offer of crash space for a Baker trip, huh? hm……

    there’s more, but i’m late for work. ha.
    love you, too.

  9. When you say ‘provider’, do you mean the particular person who will be coming out, or the program/company providing services? You do have the right to ask that another RN, PT, etc come out to provide services if you do not get along/work well with a particular individual. (most folks don’t realize that)

  10. You probably know this stuff, but here I go anyway.
    Hospice staff are usually much more sympathetic and have a much nicer bed side manner. My grandmother was in hospice on and off for 2 years. Hospice usually takes place in a nursing one and they won’t make you leave if you are no longer on hospice. Hospice really means that yes that person will die soon, but it is not something you pay for. That’s why many people remain in the space but go on and off of hospice because the government doesn’t want to foot the bill. From my experience, everyone at hospice is much better to deal with. They know that everyone involved is having a hard time and they do everything to make things at good as possible.

    With that said, it’s good that you are talking about how you are doing. No one expects you to be doing great. Just keep trying to talk. You need to grieve and go through all those stages.

    I know you mentioned a counselor. What about acupuncture? It helped a lot with emotions/depression. If it is ever something you would be interested in, let me know. It can be like a mini counseling session and you talk a lot. I just don’t give advice. Just needles.

    Overall I am glad that you have friends to turn to. Wish I could deliver the girl for ya. You are always in my thoughts.

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