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BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,646
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
Just a loooong update (and a chance for me to unload a bit) ...

Had my three-month clinic visit last week, and my FVC is 41%. A year ago, when I was diagnosed, it was 78%. So, clearly at this rate of progression, I'm going to need to check out hospice care PDQ.

My ALSA rep said she thought my husband will need hospice before I do. He is extremely weak and sick as a dog. In addition to Parkinson's, he has developed kidney failure. Both kidneys are blocked, one is distended. Next week the urologist will be putting stents in so that urine can bypass the kidneys and hopefully improve the whole situation.

It feels sometimes as if my whole life has come down to waiting: for the next test (for one or the other of us), for the results, for the next appointment, sitting in waiting rooms.

Anyway, my insurance case manager suggested we both get hospice at the same time, and that the time is now. I agree. It's time for me to seriously get ahead of the Creeping Crud.

Making arrangements for hospice will be a whole new boatload of paperwork, I know. As always, my blessed ALSA rep is way ahead of me. She wanted us to get a full-time caregiver some months ago, but my denial was still as strong as ever. "That's not going to happen to me. I'll think of something."

Now I realize that ... oh, boy, I AM going to need full-time help after all. I had to use pliers yesterday to open Velcro ! I'm still managing to dress, shower, brush my teeth, cook (a little), garden (who am I kidding?), and paint, but the weakness is quite profound. I had resolved not to drive any more, although I haven't had problems KNOCK WOOD, but I had to call paramedics for my husband a couple weeks ago, and then drive to the hospital to be with him, and back and forth for four days. (Only 2 miles) Trying to get dressed after the ambulance left, I had to keep using my freeway mantra: "Relax. You can't go any faster than you're going right now, so relax!"

Got my first leg brace yesterday (they are going to order another for my right leg next clinic visit) and a neck brace, which I cannot tolerate. (The neck brace jams my lower jaw upward, grinding my lower teeth into upper. The brace is only 3 inches wide, the smallest they have. My head droops so far forward now, there's not much neck to work with. Also, I have some compression fractures in the back of my neck from doing too many shoulder stands in Pilates at an advanced age [long story, but it was worth it], so that has shortened my neck also.)

The clinic OT is coming next week to evaluate the house. My ALSA rep said I may not actually ever need a power chair (implication: my legs will still be working when my diaphragm gives out).

The best thing about hospice is that we can stay at home.

Soooooooo ... hospice will be a whole new ballgame. It's going to take a LOT of planning for both of us, as we need to have everything in place before hospice that we will likely need in the future. My ins. case manager said that hospice doesn't mean I'll be housebound, and I can run around as much as I like. And it doesn't mean either of us will necessarily die in six months. The doctors can re-up the order if you're not dead yet. (Art Buchwald is my role model: he went into a hospice care facility, and was alive and feeling great a year or so later, and decided it was just too boring and went back home.)

I tried to talk to my husband about his getting a feeding tube, and he is SO against it, it's nuts. He helps me with mine sometimes, and I thought he could see that it's no big deal. I sometimes think he's willing himself to die. He said recently that he will go when I do. I feel he has so much to live for, so much talent still to be expressed, and will have loving family care, if he will just work to get his strength back (and if this kidney procedure works), he will be in a good place. But I have no power over his emotions and thought processes, and if a feeding tube freaks him out, then I would not dream of imposing it on him, even if I could legally. We all have our own path to follow.

The good thing about my leg brace is that it makes my ALS visible. Up to now, everybody keeps telling me how good I look, and how slow the pregression is (yeah, right) because they don't see the kind of scheming I have to go through to make a cup of tea, for instance, or some other silly maneuver. (Only half fill the kettle, put the cup in the sink because I can lift a half kettle off the stove, but not lift it the extra six inches to pour into a mug.)

So I've been faking it pretty good since diagnosed. My husband is fascinated by my braces and asking questions about my ALS for the first time. "What is the neck brace supposed to do?" "Hold my head up," "Why?" "Because my muscles are weak." The meds for his dementia (which is mainly short-term memory, and difficulty taking new information in) are really helping, too, I think.

I anticipate that hospice will be something of an adventure. For me the best thing about bulbar onset is that it has given me more time to prepare, and a couple extra years to keep our household intact. It will be very sad for Paul if he has to go into a care facility and be cared for by strangers. He finds such comfort and security in our home (So do I) so the longer we stay here, the better.

Unfortunately, our constant caregiver niece is experiencing serious problems of her own. She is caring for her parents ... dad has cancer, mother is recovering from heart attack ... and another elderly aunt, plus us. She retired in February, and everything's been hitting the wall since. Our niece ended up in the ER a few days ago. Her b/p spikes sky high, and they are worried about her heart. There is only so much stress anyone can take, and all our caregivers carry a huge load.

So I've got to figure out how to get Paul to the hospital for his surgery Thursday on my own. A friend nearby can take us, but we have to be there at six a.m. and I've been leaning on her a lot lately. I don't want to push our luck. She's my emergency backup.

Our professional caregiver has another ALS patient nearby that she cares for during the morning, but if we can swap morning and afternoon that day, our caregiver can sleep overnight here, take us and stay with me in the hospital. (And also do all the talking.) I'm also trying to find medical transport services, but the city's free one just drops you at the curb. I can't push a wheelchair when I'm using a walker, and I don't have the strength to push any more anyway. It's only two miles to the hospital, but with the leg brace, I do not want to drive, even two miles. And I still have the problem of getting Paul from the parking garage into the hospital.

I think it's finally beyond me to handle all this stuff alone (with massive help from our niece and our caregiver). Hate to say it, but it's time for me to give up trying to control it all and turn it all over to my Higher Power. As they say in 12th step groups, He didn't carry me this far to abandon me now.

And now I SERIOUSLY have to start cleaning the den. Oy. :shock:
 
Beth,

I am so sorry for what you and Paul are going through. No, you should not be handling all of this stuff alone.

Please take whatever help you can get..... good luck to Paul with his surgery.

Beth.... the one thing you will never lose is your great sense of humor.
 
WOW, Beth. You have a lot of stuff going on right now! I am glad you are considering help. It is past time you did that, I know it is a big step but it sure sounds like it is time to ask for help and accept it. You need to start taking care of yourself and turning things over to caregivers. The way you worded your post leads me to believe you are not going to consider a trache and vent? Sorry, but I find this very distressing as it is such an easy thing - very different than the medical community tells you! I wish you well!
 
Awwww Beth....that is so crappy! Our hearts are with you both! I think we all put stuff off in terms of getting help soon enough..part of the process of dealing with this thing I think.....we applaud you for taking the action that you are now! Thanks so much for sharing.
We are thinking of you!
Rick&Joan
 
Oh Beth,
What can we do here to help you? gosh I want to do something...
I think you are one of the most brave, caring people ever, and this is just a lot for one family to take. I wish I lived in LA. I would be helping any way another patient could help another.. I remember a couple of people in my area who were on hospice, and actually did well enough to leave it.. keep your chin up dear lady..
 
Ohhhhh, Beth-

I don't know what to say...... no one person should have to endure so much.
 
Beth,

Life is like a box of chocolates...

I admire the strength and resolve you show. ALS can take physical strength without our choosing but you have proven it cannot take the strength of a person's will.

I'm pulling for you and Paul.

PZ
 
Beth,

I am so sorry to read about the latest developments. Really, how can one person bear it? I am praying for you both-

Lydia
 
Hang in there kid. Feel free to let us know whatever is troubling you. We might not be able to offer more than encouragement but even that sometimes helps.

AL.
 
Beth, I'm so so sorry for what you and Paul are going through.
You are one of the most kind and caring people I met in my life.
Both you and your husband are in my prayers and thoughts.
Cookie
 
Sweet Beth, I feel the same way Hoping does. I wish I lived closer to you because I would be there in a heartbeat to help out any way I could. You are a true inspiration and even though I have never met you in person, I feel like I have learned so much from you. I aspire to have the serenity that you posess and if I ever end up half as brave as you I will be thrilled.
I am sending big big hugs your way. Please know that you and Paul are in my thoughts and prayers.
You know you always have a network of support out here rooting for you!
Your biggest fan,
Thelma
 
Whoa Beth! Rooting for you and your husband! Hang in there!
 
Aloha Beth - YOUR COURAGE AND STRNGTH ARE INSPIRING FOR ALL OF US. YOU ARE SO POSITIVE AND ENCOURAGING TO EVERYONE ON THE FORUM - I DONT KNOW HOW YOU DO IT BUT WE ALL LOVE YOU AND WISH YOU AND PAUL THE BEST.

MAHEA
 
Beth, I am sorry for all that you and Paul are going through and I hope that you can find someone to help you out. You know that we would all be there for you if we could (I would even brave driving in LA!) but we are with you in spirit anyway. You have been my inspiration since I have been on the forum because of your strength, common sense advice and your wit and I always look forward to your posts. Good luck with the operation and I hope that it won't be an adventure at all.

Your bulbar buddy, :smile:

Barry
 
Beth I am sorry to hear all that you and Paul are enduring. Your sense of humor and determination come through in each of your posts. I have learned much from your willingness to share your journey with this community. I hope you are able to coordinate the help you need and deserve.
Thinking of you in KY.
Dana
 
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