The Creeping Crud creeps on ...

[BethU]

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 dx, 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 dx. 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:

[crystalkk]

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.

[joelc]

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!

[rick/Wpg]

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

[hopingforcure]

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..

[mare]

Ohhhhh, Beth-

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

[Zaphoon]

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

[lydia]

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

[Al]

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.

[Erica]

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

[thelma313]

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

[brooksea]

Whoa Beth! Rooting for you and your husband!!! Hang in there!

[Mahealani]

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

[BarryG]

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

[DgtofTNfan]

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

[Marjorie R. Wilcox]

Dearest Beth, you are such an inspiration to us all, and such an encourager with your attitude and strength that you spill over. I am sure everyone joins with me in saying that you come to our thoughts many times a day and we send prayers up for you and Paul often. We are with you in the surgery for Paul and in your transition days ahead. You will be making your mark with the hospice workers. I look forward to a very long time, looking for Beth's witty posts. God bless!

[brendapals]

Oh dear Beth,

I wish I could be there with you, even though we'd both need someone else to talk for us! :wink:I find myself avoiding some of my "social" engagements due to the speech thing.

But please know that my prayers are with you and Paul. I'm still praying for a miracle for all of us!
God bless,
brenda

[BethU]

Bless you all. Your kindness and support mean the world to me.

[Tich1]

Beth sweetheart , I'm very new here but I hope you will accept my prayers and thoughts for you both .
I see how loved and special a person you are on this forum , and I have already gained from belonging .
xxx

[sharonca]

Beth - you win the Superwoman award of the week! I so admire your strength. As for the neck brace. I just purchased a Head Master cervical collar. Very comfortable. Although I took a suggestion to order a medium and I should have gone for the small. It was about $125 with shipping - which is really pricey for a neck brace but... So far worth it. Got the idea and saw pics on PLM. Or just google it.
Good luck with the surgery. If I could drive I'd hit the freeway and come take you.
Sharonca

[BethU]

Bless you all again and again! I've solved the hospital transport issue. My afternoon caretaker is going to stay on overnight and take us and stay with me in the hospital. It's cleared with her morning patient.

And she will track down some local transport companies for me for the future. So one issue is solved! :-)

[mare]

Hooray! Looks like all the prayers & good wishes are working!
We''ll keep 'em coming, Beth!

[olly]

beth,i am so sorry to hear how bad things are for you and your husband.
i ofton marvel when reading your posts how up beat and posative you are dealing with your husbands illness as well as your own.
i said to hopingforcure yesterday.........why do these things happen to such good people?(my aunt died of cancer on wednesday,an hour after we just visited her. she was such a good person and would do anything for anyone putting others first)
life is so crappy sometimes and we just have to try and seek out the best bits.
i hope your husbands surgery goes well and everything works out with hospice.
you are both in my prayers.

[hope_faith]

Beth, Boy oh boy...your plate is not just full, it's overflowing! I'm so sorry about what you and your husband are going through. I will be praying that it all works out for you both and you get the help you so deserve.

[mare]

Hi, Beth-

Just wanted to wish you good luck tomorrow. Hope all goes well for Paul, and that the stents do the trick for improving his kidney function! Will keep you both in my thoughts & prayers. (wow, Big prayer day tomorrow!)

Glad you will have your caregiver to help; hoping you continue to get all the help you need and so deserve!

Best wishes,
Mare

[BethU]

Thank you all! Yes, BIG day tomorrow. We need all the prayers we can get.

[BarryG]

Beth, good luck tomorrow! I really hope that it all goes well for you two.

[DgtofTNfan]

Sending prayers your way. I hope all goes well with the procedure.
Dana

[thelma313]

Beth, best of luck for tomorrow. I am sending positive thoughts and prayers your way! xoxo :)

[SandraD]

Hi Beth-

I had no idea how much you and your husband are dealing with. I appreciate all the thoughtful responses you have given me as I go through the diagnostic process. Just wanted to send thoughts and prayers your way for your husband's surgery tomorrow. In the short time I have been visiting this forum, I have come to appreciate your wisdom and wit and I can see why you are beloved to all here.

Best of luck tomorrow,

Sandra

[brendapals]

hey Beth,
My prayers are with you and Paul tomorrow-hope all goes well

[olly]

hi beth.
you and paul are in my thoughts today,i hope and pray everything turns out ok:-)

[BethU]

Bless you all for your kind thoughts and prayers ...

Paul came out of surgery quite well. The stents are in, so now it's wait-and-see to find out if this will reduce the inflamation in his kidneys. One of my nieces came up from San Diego to help get him to the hospital and she's staying the night in case he wakes up confused or falls.

Fingers crossed all will be well !! L-)

[brooksea]

Good luck to you and your husband Beth. Hope all goes well as planned with the stents.

[mare]

Beth-

So glad the surgery went well; will continue good thoughts & prayers for success!
Having your niece there must be such a comfort for you; I hope that helps you rest well tonight!

Mare

[Zaphoon]

Beth,

I'm really hoping that Paul's operation provides a very good turn-around for him. Got my fingers crossed, my toes crossed and my eyes crossed!

PZ

[thelma313]

Beth, thanks for updating. I am glad that the surgery went well and will continue to send positive healing thoughts Paul's way. I'm glad to hear that your niece is there. Big big hugs your way...

[canfiet]

Beth-I have not visited the forum for awhile and I am so sorry that you and your husband are going through so much. Glad to hear surgery was without complication!! I will keep you and yours in my prayers. Teresa

[lovelily]

Hi Beth ~ Sorry I missed this thread. Been away for a bit. So sorry for all you and hubbies troubles! :-( Prayers for continued strength, for you both!

[rose]

Beth,

How are you guys doing? Its sounds like your Paul may be (almost) as stubborn as you are!

I still say you two make the cutest couple. Its very good that you'll be able to stay home together.

big hugs to you both.

[BethU]

It's been a week and a half since Paul's surgery, and according to the urologist and post-surgery blood tests, the stents have not had any impact on the state of his kidneys. So he's getting set up to repeat all the scans, and if no improvement is detected, they will remove the stents ... and we'll go through the surgery all again, only backwards.

They left the catheters in for a few days after the surgery, and I knew it was going to be bad, but didn't know how bad. His memory is kaput (Parkinson's dementia) and the meds from the hospital apparently lingered in his system, so he was really out of it. Kept getting up and trying to get to the bath, dragging the catheter bag on the floor behind him, saying he had to pee, and falling. Trying to pull the catheter out. Etc. etc.

Our caregiver stayed with us Saturday and handled him pretty well, but when she left he got even worse. He fell three times Saturday night, and I did not want to call paramedics as they'd put him back in the hospital. I probably should have, but he hates hospitals so much, I couldn't bear it. First time, he was dead weight ... I am so weak now, I sometimes can't pick up my purse, let alone my husband! Took me 45 minutes to get him from the floor to the bed.

I read on this forum that global twitching is not characteristic of ALS, but Saturday night every muscle in my body was firing, from feet to scalp. (And for all the lurking BFS "Benigners" out there who are bothering to read through all this, yes, it is very annoying!!)

Sunday, I stayed in bed all day with him so I could stop him from getting out (and because I couldn't move). Still, he tried to get up as soon as I left the room, and fell twice again ... and got mad at me because I couldn't lift him! (As we used to say, "Heap good woman, pull plow.") I could only get his top half on the bed the last time, and told him he was on his own, I had to get on BiPap and rest. He eventually got his legs up himself the last time.

He is emaciated. Down to 108 from his normal 140, and will not eat. I take him a demitasse cup of Resource 2.0 every hour. I can't afford a caregiver 24/7, but our caregiver has agreed to come 7 days part time, and stay a couple hours later each day, so hopefully he'll be asleep when she leaves. He won't consider a PEG (why not?!?!? jeez, such an easy solution), so this week, I'll be scouting out legal pot. For him and me!

One of my case managers said he may have to have restraints, but I can't stand the idea of that. On the other hand, what else can I do to keep him from eventually breaking a hip or his neck? I think we will both have to go into a nursing home ... him to have professionals keeping him safe from falls, me to make sure they treat him kindly.

Meanwhile, our PCP put in a referral for hospice care for both of us, and I've fielded a couple calls from the hospice in question from people who could not comprehend the notion of my speaking over a computer. I was not able to make them understand a single word via DynaVox. This does not bode well ...

The thought of going through all this again if Paul's kidneys don't respond in order to take the stents out is mind-boggling. But at least I will have the caregiver 7 days. I am still too wiped out to do much but play on the computer, nap and carry tiny cups of Ensure to Paul. And I lost 2 more pounds this week, 5 altogether since I got the tube. :-( Probably all the twitching burned calories.

Oh, yes ... Paul has started slurring words and sentences occasionally. I know Parkies can get the same disarthria (slurred speech) that PALS and stroke victims do, so that may be a sign of more progression. Or it could be a sign of mini strokes. I am not going to worry about that. I'll report it to the doctor (we see the kidney guy Tuesday), and let him do the worrying.

And my favorite kitty got hit by a car and killed last Sunday night.

Not a good week.

(Rose ... that's the prettiest photo yet! Glad you're back!)

[thelma313]

My Dearest Beth,

I don't know where to begin except to say I am so mad that bad things happen to really really really good people. If only the universe could be a perfectly karmicly balanced place. I am SO SORRY that you are going through any of this!! I really wish I could come give you a hand. Rose is right about you and Paul being the cutest couple and you don't deserve this. I am so sorry that Paul has fallen or that you feel weak and I am really so heartbroken to hear about your favourite kitty. I know it's useless to ask why but geez, I really don't understand any of this. You have got to be the strongest, most amazing woman alive today!

You and Paul are in my thoughts and prayers every day. My heart goes out to you and I hope and pray that Paul will not need a second surgery. I wish all the best for you and your sweet hubby.

HUGE GIANT HUGS from Canada! xo :)

[Zaphoon]

Beth,

Thank you for letting us know how things have been for you and Paul. It is heart breaking to read what you are going through.

I hope you are able to get all of the help you need.

I am in agreement with your comment about Rose's new avatar; the best yet!

PZ

[brooksea]

Beth,

I'm so very sorry you and your husband are having such difficulties. You are such a dear woman to care for him and I take strength from your courage.

I so wish that you could get the help you need to care for yourself and your husband.

Sending hugs to the left coast.

[abbas child]

Beth,
I also have been wondering how the stents worked out, and am terrible sorry that it is the way it is. What you're going through is nightmarish. Bless the caregiver who will stay later to help. You sure are "heap good woman", Beth. And I am so very sorry about the kitty.
Ann

[BarryG]

Beth, you have to be the strongest person that I know! I can't believe all that you have been going through and even to lose your favourite cat, that is truly awful. I think that anyone would lose weight with all of the stuff you have had to do with the lifting and dragging! Please know that all of us on the forum are thinking of you and Paul and I do hope that things improve soon. Thanks for keeping us updated, I only wish that you could give us better news. Take care of yourself and try to get some rest.

[mare]

Beth-

My thoughts & feelings are exactly as everyone has expressed. I am so sorry for all you continue to have to deal with- you & Paul will remain with me in thought and prayer.

Mare

[sharonca]

Beth, I really wish there was something we could all do to help. Hopefully hospice might work out for you.

My former FIL had Parkinson's dementia when his meds were off. He thought he was pitching no hitters for the Dodger's every night!

Sharonca

[DgtofTNfan]

Beth,
I read your post with tears in my eyes. It is not fair that you struggle so much as a caregiver and as a PALS. It sounds to me that you are making the best of it and ferreting out what can be managed. I am hoping the Hospice referrals bring much needed additional care for you both. I am so sorry for the loss of your sweet kitty.
Thinking of you from KY.
Dana

[Al]

You know Beth that I'm thinking of you and Paul and wishing there was something we could do to help.

AL.

[Doris Little]

Oh Beth you have been such an inspiration to us all and it is about time you let a bit go and let us know how you are feeling. After all you have listened to all of us with such compassion and love. I do feel so much for your neice, as you say sometimes it is harder for the people that care about us watching what we are going through. My neice who is like my daughter is juggling her life between her two daughters, husband and working as an airline flight attendant and trying to spend as much time with me. Her mother, my sister is braindamaged from a car accident many years ago and her step mother has MS. You wonder why this happens to one person, and they usually are beautiful people like your neice is. Please let her know that I am thinking about her. I do wish I was not on the other side of the world as I would drop everything to give you a hand. Please ask your friends to help no matter what time of the morning it is. I am sure they would want to as most of our friends feel helpless if they are just sitting back and watching.

[rose]

Beth,

I wish I could help somehow. You're my hero in every way and I feel helpless when I read what you're having to deal with.

Please keep letting us know the state of things for you.

That's awful about your kitty too, the timing could not have been worse.

I dropped my camera last week, so need to replace it, will get more puppy pictures up then.

((((((HUGS))))!!!!)

[Tfisher]

Beth,
I am sorry to hear about all that you and your hubby are going through and to add the loss of your kitty to make matters worse. Hope things turn around for both of you soon. You are amazing!!

[Zaphoon]

Beth,

I'm still pulling for you two and hoping for the best!

(You may be wondering about Rose's new avatar... It has to be a photo of one of her lovely daughters with the family pooch.)

PZ

[BethU]

Thanks to everyone for your kindness and support. This is the only place I can come where people really know what I'm talking about, and I am so grateful to you all.

PZ ... I think you're wrong about Rose's new avatar. I think she has a rare type of ALS where she just keeps getting younger and prettier every day! :lol:

[BarryG]

I think you're wrong about Rose's new avatar. I think she has a rare type of ALS where she just keeps getting younger and prettier every day

I'll second that!:-D

[thelma313]

[QUOTE=BarryG;83636]I think you're wrong about Rose's new avatar. I think she has a rare type of ALS where she just keeps getting younger and prettier every day

I'll third that! :razz:

[GlenBrittle]

Hubba Hubba

OK ... straight from the smartass's mouth - That is Rose !

[abbas child]

I'll fifth it... or whatever... Rose is a beaut! How do you do it, Rose? My goodness, you don't even look tired! You should be the "ALS Poster woman"!

[rose]

;-)... I wish!!!!!!!!

I do kind of feel like I morphed back in time to where there was a new baby in the house though. Ernie Dog had to have 3 potty breaks between midnight and seven this morning.

He is turning out to be quite the gardening dog. Is able to yank out recently planted bedding flowers in the wink of an eye, and dig serious holes is a flash.

You can click on photo to enlarge, it might link you to the album that has him with a garden trowel. I'm having computer problems again, and no camera! (taken with phone camera)

Ernie :: forforumavatar.jpg picture by dstormewr - Photobucket

[hopingforcure]

:p:smile::smile::smile::smile:Rose,
What kind of doggie is Ernie? Sorry if someone already asked this.. He look's like a poodle mix, so cute..
You are such a pretty lady, and such a amazing warm smile

[BarryG]

So Rose, do you have a cat named Bert? :razz:

Cute dog anyway!

[Zaphoon]

Phone cameras! What will they think of next?

For some reason, the Seasame Street theme song is running through my head.

[BarryG]

I am the count, I love to count!

[Dana Razo]

OMG Rose you are beautiful and puppy is adorable!

Beth,
Im new on this forum but after reading what you and your husband are going through I feel a bit selfish. You have given me such wonderful advice all the while battling life's challenges.We live in Santa Cruz, CA but i wish we lived closer. I'd be your caregiver in a heart beat.
Please keep us updated. There is not a whole lot we can do for you but be here for you :wink: