I need help ASAP

• By RochesterBarb
• Posted March 28, 2009 at 7:11 am
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I can feel the pain in your words as you watch your brother deteriorate. I, too, watched my sister's progression with ALS over a 4 year period. The resistance you describe was very difficult for me, too. That "stubbornness" is the inability of the person with ALS to comprehend and accept that their body is turning on them. My sister used to fall and fall and fall and still refused to use most of the aids offered by the PT and OT experts. She was one step behind on everything. When they wanted her to use a cane, she refused. When they wanted her to use a walker, she finally used the cane. When they wanted her in a wheelchair, she finally used the walker. No matter what you say or do, your brother is going to go at his own pace in accepting this (or not). It took two years of injuring herself, and finally almost dying prematurely (because she insisted on walking on cobblestones with the walker, to the lab, when they had told her to stay home and they'd send the phlebotomist to the house) from twisting an ankle, which threw a blood clot which passed through her heart and landed in her lung, to finally convince her that perhaps, just PERHAPS, people wanted to help her avoid more pain than she was already going through. After repeated episodes like this, I finally realized that when it got bad enough, she would do what we wanted her to do, but not until it was absolutely necessary. But the people with ALS just cannot see that maybe they are injuring themselves. Any more than you or I would probably be able to accept what must be the worst disease in the world. And of course WE cannot really know what THEY are going through and how it feels. But, like you, it drove me CRAZY seeing her crack her head on the floor over and over again from a fall. She insisted on leaving throw rugs around, despite the fact that the therapists who came to the house warned her of their danger. But the visual beauty of the place was important to her, and it was one more loss, one more change that was naturally resisted in this disease of daily, hourly losses.
Related to braces, not sure what kind you are taking about, but if you mean something that would sort of splint the arm, they wouldn't do that because then the person can't bend his arm to break a fall. But use your OT person as a valuable resource, of course. With my sister, some of the aids they suggested worked, and some didn't, and some had to be modified after trying. But I learned that some of the things that worked for others I knew with other disabilities (for instance, a curved handle spoon tethered by a brace to a person's wrist) didn't help my sister in her ALS because by the time she was able to get the food to her mouth, the exhaustion caused by the effort and the ALS negated the benefit of the nutrition. She'd be shot for the day.
Let me just say that now that my sister is gone, I have some things I'm glad I did, and some I regret. I wish I had listened to her more about what SHE wanted. But it's sort of impossible, isn't it? I mean there you are, seeing this person you love hurting themselves physically because their emotions and mind cannot accept what their body is doing. I truly did my best in what are amazingly difficult conditions (she lived alone and wanted to die at home) but I could have made it a bit easier on her AND myself by listening more and chastising less. I know it is incredibly painful for us siblings to see them struggle and hurt themselves over and over again, but eventually whatever it is they are struggling against becomes so bad they are forced by they own bodies to accept the accommodation offered. That stubbornness was probably what helped her live a little bit longer, I guess. It made it hell for all of us helping to care for her, but now I realize that it was not only her resisting the disease, but also might have been caused by some frontal lobe deterioration which about 50% of ALS patients suffer (at least according to some websites). My sister's behaviors caused some of the aides to quit, but then others were very grateful for the things she taught them during the course of her illness. She just could NOT see that she was hurting herself. COULD not.
I wish you peace, stamina, love, strength, courage, compassion, SLEEP, and most of all love and faith as you walk with your brother through the most difficult period of his life, and possibly yours. My sister died peacefully at home after 4 years of struggle, through the combined efforts and advocacy of many people. The day she died, Easter lilies bloomed in her yard in July. That gave me a measure of peace. My heart goes out to you because no one really knows how hard it is for the caregivers except another caregiver, and a sibling is in a worse position than a spouse because we have no authority or power in the situation. I made the mistake of taking on POA and all responsibility for arranging her care, with absolutely no authority and no knowledge of her finances. It's still hard for me to understand my sister's stubbornness, but perhaps I would be even more determined than she, if it happened to me. My sister only used the leg braces VERY briefly. Sometimes she said that the devices offered caused more stress than the physical condition they were intended to alleviate.
Blessings on you both. Sleep when you can. There were months for me of little sleep and no time to eat, and I didn't even live with her! Hang in there. Sorry I went on and on like this, but I guess I'm still recovering myself. A support group helps, but when things got worse I didn't have time to go, so I did the online thing and that helped. I wish I could tell you it gets better; but the only thing that got better was me changing to accept the the situations I could not change.
Much love,
Another Sibling

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• By Steph09
• Posted March 28, 2009 at 9:50 am
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Barb

You have captured and described what I am feeling and thinking so perfectly that I sat here and cried as I read your post over and over. I can't thank you enough for writing and my heart cries with you in the loss of your sister. What makes this even more difficult for me is my brother is two states away. He does not have an OT person and there are no support groups in WV. There is a support group here in NC where I am and I hope to attend the next meeting. My brother is married so at least he is not alone. They are looking for a new house that will accomodate him better since their current house is a 2-story and has no downstairs bedroom or full bath. I am sure at some point I will be the one to go there and take care of him. Thank you again for your post. I printed it and will probably read it over and over and over. I feel that iis was a blessing and a destiny that you read my post. God Bless you!

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• By joe
• Posted March 28, 2009 at 10:00 am
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As a person living with ALS I know first hand what your brother is going thru. I was and am still lucky, that’s right lucky, with this disease. When I was first told in December of 1995, that I had ALS I was devastated. I used no walking devices until I fell and needed 15 stitches to my forehead that was in 2003. Then I fell again and needed 10 staples to close the gash in my forehead. Best part was I fell using the walker and hit my forehead on the walker. We laugh about it now. I know that using a cane then the walker was hard for me to accept because it meant I WASN’T INDEPENDENT anymore. As a man that loss of independency is a crushing blow. I am still lucky, that over the past 13 years I am still able to walk and work as a toll collector on the Pennsylvania Turnpike. Please tell your brother not to feel bad about using walking devices to help with balance. It wasn’t until I accepted that that I was able to go where I wanted to go. I have a three wheeled walker to get around daily and a wheel chair that I use if I go somewhere that requires a lot of walking to get from the parking lot to the event I’m going to. Baseball games, training camp for the Steelers, to the casino’s stuff like that. I have an AFO that I don’t use. I felt it was more of a hindrance than a help. It was too ridged to allow my ankle to move. The physical therapist at the Cleveland Clinic wants me to wear it, but laughs at me when I don’t.
Believe me it’s not fun having this disease but, I have accepted it and I’m an advocate for ALS. I have gone to D.C. the past three years and I am going again this year for Advocacy days. I have spoken to State Senators and Representatives for funding for the local ALS Association. I spoke to 70 fourth graders that had just finish studying about Lou Gehrig’s life. I was with one for the local ALS doctors, he gave the medical side of the disease, and I gave the particle side of how it has affected my life and that of my family. My wife and I “live one day at a time and live it to the fullest.” What else can one do?
I have met many wonderful people at the Support group meeting and yes I have lost many good friends to this disease. If you have a support group in your area, get involved with them as soon as possible. There are a lot of web sites out their for ALS people (PALS) like patientslikeme.com and this one too; http://client1.sigmachat.com/sc.php?id=144320 these rooms will allow you and your brother to chat with other PALS to find out what they are going thru. You will find that most if not all the people are positive in these rooms.
Hope this helps in some way. Good luck and may God bless you and your brother.
Joe

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• By Steph09
• Posted March 28, 2009 at 11:37 am
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Joe

Thank you so much for your post. You have given me some good information. One thing about my brother's situation. He seems to take things in pretty good stride although he always ends his emails with "this is getting old" when he tells me about his falling. I email him every morning with the same line. Hey Brother-Man, how ya doin' today? How ya feelin'? A couple of weeks ago he was sitting out on his back step, which is a pretty deep step, and he was talking on the phone and watching his dog. He was concerned about something the dog was doing and tried to get up using his cane with one hand while he held the phone with the other. As he struggled to get up he pitched forward and fell head first onto a concete patio. When his wife got home 10 minutes later and found a dark house and no one answered when she called out she went ballistic when she found him out in the back yard. She called my mother hysterical which then prompted a phone call from my mother to me. I was very upset and in turn called my brother. But, I did not say anything about the incident. I wanted to see if he would say anything about it to me. After chatting for a while he did bring it up. After he told me he fell I asked him what happened to the telephone. He said "Oh I kept hold of the phone". I asked him what the person said on the end of the phone. He said she asked him what that noise was and he told her he just fell of the porch. She asked if she need to call someone for help. He said no, I seem to be ok, and my wife will be home in about 10 minutes. I said, "so you just laid out in the yard and finished your coversation"? He laughed and said, "yeah, pretty much, there wasn't anything else to do". So we had a big laugh about it. But when is wife got home she went off on him. He told me he did not want to call her because there was no point in upsetting her while she was driving in heavy traffic. I can see his point. I want to tell her that she needs to lighten up because she has a long road to go. I have a somewhat sick sense of humor. If I had gotten home and seen him out there I would have asked him why he had decided to take a nap in the yard. I know that this disease is a serious killer and you have to keep that in the back of your mind. But treating someone like they are a cripple when they repeatedly say they don't want to be a cripple only reinforces that they are becoming a cripple. Does that make sense or am I on the wrong track? I do want to get involved with our local ALS Chapter if time will let me. My husband and I own our own business so spare hours are hard to come by.

Keep up your good spirits, Joe. I know that is what helps you get through. I have good days and bad but I am trying really hard. This is all still so new.

My heart is with you and your family.

Steph

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• By Bonniesdad
• Posted March 28, 2009 at 12:13 pm
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Hello to all of you. I just lost my father to ALS, and felt inspired to reply. First, I think this is an amazing forum, with a lot of help and inspiration. I, too, was a caregiver to my dad, and boy was he "patient"!!! I have so much empathy/support for PALS, as I bumbled quite a bit with the trachea suctioning, feeding through the peg tube, arranging pillows that later fell apart, etc. These times, and many others, turn out to be joyous, funny, and fortunately, not dangerous. My dad used to say "Life is in Session", and "Enjoy the Process". Just like you, Joe, he made peace with ALS. I also understand the desire to maintain control for as long as (or longer than) possible. My father, Trent, did the same thing. Truthfully, and I think I hear it in the words I've read, I think it kept him engaged, alive, part of the process. So unnerving for us caregivers, but I remember a nurse telling me, after getting a "lecture" (my father lost his voice right away) about suctioning properly, how impressed this nurse was at my father's insistance on being a part of his own care. While Trent didn't always make the "best" decisions, he listened to doctors, weighed his options, and our opinions. He also got our respect. He only used a wheelchair for a month, as he chose to use it only as the very last resort (much to our dismay). He did use hand splints, and leg boots, but he had alot of PT, and I never saw the splints/boots decrease his range of motion. I would suggest to spend a bit of time on range of motion work, PT, and massage. Those things, and my father's unbelievable "will" (read: stubbornness) kept him using his hands and feet for almost 3 years after diagnosis.
Barb, Joe, Steph, and all of you PALS and PALS caregivers and caring friends and relatives, you all are my inspiration, and you all kept my father going for 41/2 years!!!!

Bonnie

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• By Steph09
• Posted March 28, 2009 at 1:10 pm
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Bonnie

Thank you for your reply. Again, my heart cries with you in the sorrow of your loss of your Dad.

I wish my brother would begin a regimen of PT, range of motion and massage. I am guessing he needs a prescription written for that to start it. What makes me a little angry is the ALS clinic he goes to is 5 hours away from him. At his last appointment his primary doctor said she did not see any decrease in his abilities but yet he tells me, as he told her, he is losing his ability to grip and he is experiencing the heavy head feeling. He says he has a hard time getting money out of his wallet, using utensils, etc. They put in a call to her but she has not responded. This after telling them that all they needed to do was call if there was a problem and she would respond right away.

He still drives a stick shift car but claims he does not have a problem with it. It still scares me since he has to grip the stick shift and constantly use his feet. I just have to pray that he knows best. Information about arm and leg braces is what I am looking for so I appreciate your input, Bonnie.

The following is a poem I would like to share with all of you. I read it at my Father's funeral.

A Message of Sympathy And Hope

When someone dies, a cloud turns into
an angel, and flies up to tell God
to put another flower on a pillow.
A bird gives the message back to
the world, and sings a silent prayer
that makes the rain cry. People disappear,
but they never really go away.
The spirits up there put the sun to bed,
wake up the grass and spin the earth
in dizzy circles. Sometimes you can
see them dancing in a cloud during
the day time, when they're supposed
to be sleeping. They paint the rainbows
and also the sunsets and make waves
splash and tug at the tide. They toss
shooting stars and listen to wishes.
And when they sing wind-songs,
they whisper to us, "Don't miss me
too much. The view is nice and
I am doing just fine."

Author Unknown

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• By RochesterBarb
• Posted March 28, 2009 at 1:49 pm
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Dear Steph,
Thank you so much for replying. I feel like I am recovering from Post Traumatic Stress Syndrome, especially with my forgetfulness at times. Maybe you are the reason I awoke in the middle of the night last night :) It is encouraging for me to know that good comes out of this "severe mercy" (to borrow a book title). My sister made her peace with God through all of this, and since she was THE most independent person I knew, maybe it took something as devastating as ALS to bring her to a point where she felt some need for Him. So as a Christian I look forward to seeing her again some day in a better place than this :)
The side benefits of this time, for me are still being seen. (And I feel a little self-absorbed for admitting that.) For instance, I was the sort of person who sometimes allowed life's little inconveniences to bring me to a much higher state of agitation than warranted. For instance, if I ordered a pizza and it arrived with the wrong toppings, I'd get upset. But now, there is very little that gets me upset, because I realize there are SO many real things in the world that are so much worse than these little temporary annoyances. I am so grateful to be able to move my limbs at will. And to BREATHE! I think I am kinder; and less afraid of people. Now I think to myself, "By the grace of God, I survived my sister's ALS; in His strength I can face anyone and anything."
I don't want to scare you, but since my sister's original diagnosis, we have had eight major crises in the extended and immediate family (including my main helper, my mom, dying of a cerebral hemorrhage halfway through my sister's illness; a beloved cousin committing suicide; our house burning down last November; and our youngest son currently being assessed for a brain tumor). If not for the lessons I learned during my sister's illness, I'd never have had the peace, grace, and faith to face these new challenges calmly and to trust that the Lord would not only sustain me, but also bring good out of them somehow. I am not trying to be preachy here. Believe me, I am not a Pollyanna. My natural temperament is melancholy and pessimistic. But I cannot deny His miraculous power during all of this. He proved Himself over and over and over again. One morning, as I had just finished subbing out a month of 45 hour a week coverage for one of the aides who was going to be away, another aide called to say she needed surgery and would also be out for a month. You have no idea how difficult it is to keep coverage 24 hours a day for a patient whose case is as challenging as my sister's was. Some days, after having been awake until 2 AM doing medical paperwork, I'd be awakened at 5:45 with a "no show" aide situation. Some days I didn't get to eat or brush my teeth until 3 PM. So, anyway, that one morning with the two aides having to be off a month, I cried out to God, "Lord! Do you SEE me?! I believe You love me, but do you SEE me? Now? In this current mess?" Immediately the phone rang and a woman from a little church I attend said, "Barb, are you OK? The Lord has had you on my heart all morning and I just wanted you to know I'm praying for you." I sobbed that He had been lifting me up before I even asked Him.
I hope I am not offending you by sharing these intimate details. It's just that I would never have survived without His moment-by-moment care; and I can't omit that major detail. I honestly don't know how other people do it who don't believe in God.
I do also want to give one note of thanks to my deaf clients (I am a sign-language interpreter by trade): I would never have had the knowledge of advocacy skills that work and don't work if not for watching my clients over the past 30 years and how they survive in this Hearing world. Nor would I have had the specific knowledge I needed on medical details and what is possible in the social services realm if not for interpreting nursing and social work classes and meetings.
I am still seeing ways this experience has changed me, but if you are able to keep your eyes on the ultimate goal (in our case, as I said, my sister's wish was to die at home) it helps. If your brother and his wife can identify what they want most of all in this, it helps as a reference point. What I mean is, if I said to my sister, "be nicer to the aides" that did nothing. But if I said to her, "Joyce, you say you want to die at home, right? I'm really trying to make that happen. But if we can't attract and keep aides, how are we going to do that? One person cannot physically provide round-the-clock care" it worked better. She did move to a one floor condo two years before she died; but again, she didn't have a spouse to help her, so she needed complete mobility earlier than some.
Please be a sounding board for your sister-in-law! The two of you may become very close through this. My sister's ex-husband, her son, and I worked very well together as a team and we three were the only ones who understood what it was like to try to support THIS particular patient through this awful time. Even our own spouses couldn't really understand. (And what you have left to give the other important people in your life is another whole story.) You and your sister-in-law are in for an amazing ride. Other PALS will be able to speak to your brother's experience, but only other caregivers can speak to yours.
Much, much love..
Barb
P.S. If you ever want to speak about things too private for this forum, my email is hashfolk@rochester.rr.com

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• By Steph09
• Posted March 28, 2009 at 9:28 pm
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Barb

I can't say that I am exactly what you would call a "practicing Christian" if that involves going to church. However, I do have a deep rooted faith in God. But, I get a little tired of people telling me "God does not give us more than we can handle". All I can say to that is God must think I am Hurcules sometimes. My Dad died in 2000 from carcinoid tumors, and I was married at that time (still am). I did not go home for 3 months except for maybe a few hours visit. Between my mother having major surgery and not understanding what all she had to do to take care of my father's funeral and estate filing, it was a nightmare. I had always told my husband that when the end came I was going to fall apart. To this day I never have because I never had the opportunity. On September 11th of 2008 my mother had a heart attack. She is 72. She also lives in NC, about 30 miles from me. So, you see, everything about my family falls on my shoulders. But you know what they say...."He ain't heavy, He's my brother" and I will do anything at anytime to make his life more comfortable.

When my Dad died I said he went to live in the
Pleiades star system (the seven sisters) because it is my favorite group of stars. I even put a few pieces of his cremaines in a star urn pendant that I wear. When I need to talk to him and to God about my brother or about life in general I go outside and look at the Pleiades and talk to them. I am sure my neighbors think I am crazy. Let 'em think.

You have definitely been thru some hellish times, Barb. I am sure without faith, family and friends you would be in worse shape. I would definitely like to be able to talk to you about other things and the same is true on my end. My email address is
samspo0529@aol.com

I think I also did a friend request for you in case you have not seen it.

I wish my brother would sign up for Inspire so he could meet as many wonderful people as I have. What you all have written to me today has been a blessing beyond compare.

With love in my heart for my ALS family,

Steph

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• By RochesterBarb
• Posted March 29, 2009 at 9:47 am
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Hi :)
No, I don't mean "go to church"... I just mean a relationship; not religion. As a matter of fact I stopped going to a big church when my sister got worse and mom died because the energy involved in just all of that small talk and social activity became too much for me. I needed to focus on the tasks at hand and that took all my energy. Eventually I also stopped working, for about 8 months. We go to a little home group of believers, about 20 people, and we just support one another, pray, read the Scriptures, and then one person usually will share on a topic. I needed to be among people who were NOT "religious"... actually, to be honest, I think Jesus would not go to half the churches around today, if they major on minors rather than loving and serving people and equipping them to go out into the world and do the same.
I don't really do any friends requests, whether on here or Facebook, because it seemed like one more task to do while in the midst of filling out all these forms for our insurance company and our son's illness, ya know? So I just keep up with my regular email and once in a great while answer one of the posts here. My husband checks his Facebook so we know what our kids and grandkids are up to these days ;)
That whole thing about "God not giving us more than we can handle", is misquoted (I mean, if people think they are quoting the Bible). Just like, "God helps those who help themselves." I guess it's our American penchant for being independent and thinking that if we just try hard enough we can do anything. That hasn't worked for me. My feeling is that God helps those who let Him. And God doesn't give us more than HE can handle :) Plus, I don't believe He gave my sister ALS. I believe there are bad things in the world that He helps us through if we allow it. But I also am not out to convince anyone to believe my way. I just want to be able to show them through my actions that there is a God, and He loves them more than they can fathom.
It sounds like you and I have had a lot of the same challenges. Maybe most women our age face the same things, but you never see a program on TV about it, do you? How to juggle settling someone's estate while dealing with kids, work, your own aging, health issues, other relatives, etc etc etc. That estate thing is a TRIP, isn't it?! Whew! I just finished refiling my mom's estate taxes for the second time because we keep finding these little accounts no one knew she had (like she would open a savings account at some bank, to get the free toaster, and then forget she had it). She died in 2007, this is 2009, and I think I am FINALLY finished with Mom's stuff. Well, life is never dull, eh?
I love your story about talking to your dad. I have my dad's chalk portrait from the Navy above my desk so I can talk to him and appreciate all the love he gave us. I even stuck his driver's license up there because his photo on it cracks me up.
Nature calms me greatly, too. As a matter of fact, as we rebuild the house I've hired a friend who is a faux painter to first do some clouds on the master bedroom ceiling, and then we are putting, in paint that is only visible at night, some of the constellations up there; so by day you'll see clouds, and at night, stars. Sounds tacky, but I know she will do a beautiful job. In the fire, the entire second floor was consumed, but the one thing that survived unscathed was a heart shaped pendant my dad had made in WWII, with a photo of my mom on one side, and my sister on the other (I wasn't born yet). It has glass on both sides, and even though the wall and the cabinet this was stored in were totally destroyed, this ornament was found perfectly whole in the ashes. I have received many little "gifts" like that in the midst of sorrow.
I also feel, like you, that I just haven't had time to properly grieve, because the demands on our time don't stop. I do plan to "try to fit it in" haha...
Enjoy your day,
The sun is finally shining here in gray and dreary Rochester, NY :)
-Barb

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• By Steph09
• Posted March 29, 2009 at 2:02 pm
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You have been my bit of sunshine today, as well, Barb.

You know, we all do things that keep thoe we have lost close to us, I think. After my Dad died, my Mom took his wedding ring and put it in a drawer. I told her that if that was where it was going to stay I wanted it. I wear it every day. I put my wedding ring in a drawer. I have a photo of Dad and me from my wedding day in 1997 (2nd marriage; long story; will email that one sometime) tucked in the side of the bathroom mirror. Every morning as I get ready for work I pick up Dad's ring, kiss it, look at the photo and say "I love you, Daddy" and then I touch his face. If only I could touch him for real. I keep photos of him every where and even have is urn sitting here in my kitchen. His urn was sitting at my Mom's house for a while after i picked it up from the funeral home and she said one day she was going to put it in the mosoleum. I told her over my dead body. So I brought him here to live with me. I called my brother and said "Guess who's riding shotgun with me?".....DAD!!! He did not think it was funny. i must have a sick sense of humor. Well, actually, i know i do. Ain't no sense in taking everything so seriously. You're never going to get out of this world alive, right?

I have your email so I will keep in touch if that is ok.

Much Love My Sister

Steph

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• By Smilef
• Posted March 29, 2009 at 11:43 pm
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Hi all! My name is Marcy!I have talked to many of you on line before. I lost my brother after 12 yeas on Jan 8 2008. It was the hardest thing to let him go. The summer before he passed he called me and asked me to come home with the kids for the summer. He wanted to spend his last summer with me. My four girls and I went to NY to spend time with him. It was great. Him, our sister and I talked about bring Hospice in. We talked with the doctor with him in the room liked he wanted. They talked about how they take the trachea and vent away. He was very scared. I also do home care so I am aware of it. He wanted our sister and I in the room with him when he was ready. After leavin NY he became very sick with pneoumonia. He never had that the whole 12 years. He knew he was ready. He was getting weaker and weaker. He went in the hospital in November and never came home! It really sucks. Not a day goes by that I do not miss him. I think of him all the time. I have a picture of him in the bathroom and every morning I talk to him.My kids talk to him and draw him pictures all the time. I told him as he was passing how proud we all were of him and that he won this battle. It stinks that I do not have him close to me. I sometimes feel him near but I would love to see him again.
I feel bad for anyone family member or patient going through this. But like Joe said being able to except it helps alot.
I also went to Washington for the conference. It was amazing. If you get the chance go. You will be amazed at all you will learn.
Marcy
CO

Smilef@aol.com

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• By RochesterBarb
• Posted March 30, 2009 at 9:18 am
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Steph,
I think "Dad's riding shotgun with me" is hysterical. Laughed out loud. Thanks and have a good one :)
-Barb

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