Wake-up Calls

[BethU]

Well, it's rant 'n' rave time again. Have had a series of wake-up calls, and have finally realized that denial is not a good coping mechanism for long. Especially with ALS.

My "I can manage" mentality came to a screeching halt about 3 weeks ago, my last trip to the ER, when my LightWriter (which is almost kaput anyway ... I'm waiting on a grant for a new one) died. They kept me for 2 days, and ... despite written doctor's orders that I be tube fed every 4 hours, and despite the six pack of Ensure delivered to my bedside table ... I was not fed during the entire stay.

My vain attempts to convince the nurses that I needed to communicate (using one hand as a "pad" and the other hand "writing") and despite my frantic pointing at the Ensure when someone wandered in to take vitals or mop the floor, I could not get across to anyone my situation. I buzzed the nurses 30 times in one half-hour period, and they responded twice ... each time asking if I needed help. Each time I responded "Gaaaa" which is the limit of my vocabulary, and they clicked off. By the time my caregiver rescued me Saturday afternoon, EL and low-blood sugar had set in, and I was sobbing uncontrollably. I'll cut it short there.

Second wake-up call: I finally realized that not only cannot I manage myself, I am in no condition to manage my husband's care. Both his Parkinson's and his dementia are progressing, we cannot communicate, except laboriously through the broken LightWriter, which requires me to write only enough for the little screen, hand it to him, let him read it and decipher it and hand it back. I have trouble lifting the damn thing (1.5 pounds) as is, and this wears me out. Otherwise, it is getting him into a wheelchair and into the den for the DynaVox, which is equally hard for him to understand.

Third wake-up call: The situation with my first caregiver (Nurse Ratchet in her meaner moods) was intolerable, and I felt it could descend into abuse. Since I'm 5'1" and she is 5'10" and about 250 lbs, it would prove to be an unequal struggle if it ever came to that. I had planned to renovate the house for handicapped and have her move in, but decided it was too dicey. The last few days were so ugly, I thank God we never got that far along and she is gone. It was sooooooooooo scary letting her go, as she knew the household inside out, but sometimes you just have to take that leap of faith in your Higher Power.

I can't dress myself, bathe myself, open the refrigerator door half the time (that suction/vacuum thing), unlatch the microwave door, or lift my arms, and my days of feeding myself are almost at an end. My hands are like claws ... can't even put lotion on my face. Managing the three new p/t caregivers, teaching them all the routines for both of us via LightWriter is totally exhausting, basically having to supervise and interact with them constantly, is wearing me out. I was measured for my power chair this week, and hope to have the paperwork complete before MDA cuts off funding. I tried to read a favorite book this week, and couldn't lift a hard-cover book!

Hence: we're selling the house and moving to an assisted living/dementia care/ nursing facility. Stu of Guardian Angels is helping locate a facility (Bless him ! But don't quote me. :lol I hated the thought of leaving my books and other things behind, but checked out Kindels. (sp?) 10 ounces, and I can download a lot of my favorites for free, many others for 99 cents. I'll be getting an Ipod TEXT with a voice program so I can carry it with me everywhere ... small enuf for a hospital bed. I'm ready for a big bonfire to leave it all behind and get myself and my husband well taken care of at last. I have carried this sucker as far as I can alone.

My husband cries everytime I mention moving to a facility, and that just kills me, but you can't argue with ALS. It is what it is.

And what a relief! There will be lots of tears (my neuro has upped the dose of my EL meds, and just in time), but I think I'm in touch with the reality of ALS now. You just can't go it alone ... for long!

This is long enough, it's off my chest. Thanks anyone who made it through this!

 

[JUDIEMATUL]

Hi Beth,
I read it through...the whole thing, and I'm so sorry for your situation...I'm learning quickly that ALS is has a mind of its own. I was diagnosed in May and walked into my appt with a walker and just got my power chair delivered this week- at 61 years young. Hang in there...
Judie

 

[halfin]

Wow Beth, what a sad and shocking story, the part about the hospital. How enormously frustrating that must have been to be so ignored with no attempt to communicate with you. I am glad though that you have found a way forward for your home situation, which I can see has been getting worse and worse. That is a hard decision but it sounds like the right one, and that is terrific that Stu is helping you organize things. I hope you get some good luck for a change, you are overdue.

 

[indigosd]

Oh our darling Beth, what to do..? :sad: I know it is right decision and yet, my heart is breaking for you and DH. I soul wish that I could clone myself and come to help you. It would be such an honor to share this journey with YOU. Is there any thing that I can do that would help you? I HATE THIS DISEASE! :twisted: sending you soft hugs from the Prairie, Kay Marie
Ps Can I at least file a complaint against that hospital and turn the cigarette smoking Flying Monkeys loose to do some serious whup a-- on those ignorant poor excuses of Health care providers?!

 

[joelc]

Beth, my heart and prayers are with you in the decisions and changes facing you! I greatly admire your strength.

God Bless you both!

 

[GlenBrittle]

Beth,

Hoping for a smooth transition to a hopefully better place to live.

Big Hug

Glen

 

[Zaphoon]

Beth, I'm really sorry you had such a miserable time of it with hospital staff and sorrier you must sell your home.

I'm hoping the sale of your home and transition into new living quarters go as smoothly as possible.

You make a good point regarding denial and its limits. I'm a card carrying member of the denial club myself and don't accept things I feel changing physically.

Stu is wonderful and I'm happy to know he is helping you.

Kim

 

[peter57]

Beth,
All I can say is to endorse the words that have already being said about your situation.

I hope the transition to the new place of residence goes well.

I am like Kim, currently a denial club member, but who knows in the future?

Cheers and hang in there

Peter

 

[KeeKer]

Beth, so sorry for the state of your life right now. Wish there was something I could do to make it all go away. Hopefully the new place will be easier on you and your hubby. I know that Stu will find you a terrific place and will keep an eye on you. (no, I won't tell him).
I so hurt to read of your episode in the hospital. You'd think they would be better trained! I second the flying monkeys!
Glad to hear about you getting a Kindle. At least you will still be able to read. I know that this is a difficult journey, but you have been handling it with wit, style and grace. Keep on kicking.
Colleen

 

[kelly]

Beth..
reading your post...I went through the many phases of emotion that happens so often with ALS. I first read the denial part...I am sitting here looking at a pin that I bought that states..I work hard to deny my denial! I totally get what you are saying. The second phase that I felt reading your note was "ANGER"...I am angry that you were put into that situation with no one there to advocate for you..or even willing to take the time to figure out what you were trying to say...and now sadness about your transition plans. The positive is that you will have people to care for you and your hubby. Now we must look at the positives..which are challenging for sure. My hubby Andrew has a Kindle and loves it..so easy to download books..and easy to change the pages. I set it up on his lap table and he is still able to press the button to turn the page. Please know..that I do not post lengthy notes much..time..fatigue related. But..your humor is so appreciated by our family. I often read your posts to Andrew..even if they are warped..we can relate...and have a much needed laugh. Please keep fighting. YOu are in our thoughts.

 

[thelma313]

Dearest Beth,

Reading your post I just can't believe that anything like ALS could even happen to the human body and yet I witness it almost daily in my dad. Like you his hands are now "claws" as you put it. (I think they're more like mittens.) It is shocking to me that there is no cure. It is so unfair, so unjust and makes my heart hurt so much. I truly wish there was something more I could do to help you but all I can do is offer you my support and my sheer admiration from afar, for your strength of character and your courage. You are a force to be reckoned with and I believe you made the right decision to take that leap of faith. I am sure your HP will keep you safe and continue to infuse you with the brilliance that you radiate even through text via the internet.

My heart goes out to you and Paul. I think that you should be tremendously proud of yourself for taking yourself and your sweetheart this far at home. You did and amazing job of taking care of your husband and I am sure you will continue to do so in your new home. He is one lucky lucky guy!

I am sending you great big hugs and total unbridled admiration. You are a true hero, BethU!
xo Rosella

 

[laurel]

Dear Beth,
I am in the group that considers you a true hero. As a retired nurse, I feel ashamed of the profession upon reading about the negligence of the nurses who had the responsibility to care for you when you were in hospital. It is absolutely unbelievable and the hospital administrators need to know about their total abandonment of their responsibilities toward you. Maybe you could send them a copy of your posting to this group. I feel like your experience needs to make the headlines. You are a remarkable person and this shines through every time you write. You are a fighter and a survivor and a good human being. You are doing the right thing as you need someone to shoulder some of heavy unbearable burdens that are on your shoulders. Thank God Stu is available and is stepping in to help. Beth your post breaks my heart. You are in my prayers.
Laurel

 

[paleshia]

beth, it is truly time for you to be helped the way you deserve. you have been caregiver and patient. now i pray blessings and peace and rest in your new place, both a new home and a new acceptance of help from others. you are not giving in to this, only taking relief of the things you can no longer do. you are so valued here and i wish you happier days ahead.

 

[rose]

Beth,

In so many ways, you've been living the nightmare that we all fear for ourselves or our loved ones. Yet, you still manage to remain strong, even in writing about it with a touch of humor and sarcasm.

You are loved by more people than you can imagine, and I'm so glad that Stu physically lives near enough by to be a real help to you. The ipod sounds like something you could have used long before this, and, like you said, you can't argue with ALS.

You're my hero in many ways. I talk about you to my family like you live just down the street, rather than across the continent.

Much love and big hugs to you my friend!

 

[BethU]

Thank you all so much for your kindness. This group's (family's!) support means more than you'll ever know. I feel very positive about the change, no matter how hard I fought it. I keep thinking now, I was an idiot to not take real action before this. What would have happened if one of my choking episodes didn't end happily, and Paul would be left here alone?

In the hospital, my greatest fear was that he would try to drive to see me. When I pushed the emergency button I wear for 911, and the disembodied voice boomed out, "Are you all right? Do you need help?" he answered in the other room, "No, we're fine!." He had no idea where the voice was coming from, of course. They couldn't hear me or understand me. Fortunately, they telephoned, and I got to the DynaVox, but when the ambulance came, Paul told them he would follow them in the car, and I was frantically typing "No, don't let him drive!" on the LightWriter (before it conked out). Last time he drove to the store alone (6 blocks away), he ended up in Malibu, 30 miles away, in a private estate, surrounded by security guards. Thank God, they saw that he was confused and got him home OK.

So, in the hospital, the nurse would pop her head in, and say, "We called your husband, he's coming to pick you up," and I was madly signaling, "No, no." But it turned out, after the ambulance left, he forgot I'd gone, and they only reached the caregiver, who had arrived after I was taken away, and stayed overnight with him. Thank heavens.

I don't know what the nurse's workload was, but the assistant nurse was handling 27 patients on Saturday. Normally, I'm not shy about writing stern letters ... or ones full of praise ... but I'm going to let this slide. It was my wake-up call. I've been an idiot not to acknowledge to myself my husband's real state, and his needs. Once I get him settled in a good place (and me there, too, to keep nagging him), with some money from the house to take care of him when I croak, I'll feel much better about everything!

Thanks again, everybody! As Joel says, prepare early and thoroughly.