The other ugly side of ALS

I've been thinking about writing this for alot longer than I care to admit. My wife of 14 years left me, at my request, back in May. Without getting into too much detail, and out of respect for what we once had, the bottom line was that she just wasn't meant to be a caregiver...or not mine anyway. I've always said that she began mourning my death from the very day I was diagnosed. There were some very worthy attempts at working it out, staying together, but even those were masked by the ugly underbelly of ALS that I think most do not see. I'd just like to let others know that you do not have to lie there and be neglected, mistreated or abused! This situation took six years to culminate in my case, as my progression has been somewhat slow, but the more dependent I became, the more it became obvious.

I'm blessed that my situation has opened other doors for me, that others can see me first, instead of just as a PALS, made to feel a burden. Don't let the disease define you, but tell your body how to define the disease, and take one day at a time, or one hour, or minute...whatever gets you through it.

On a lighter note, please drop by my web site, www.stevewhitenc.com and let me know you've been there by signing my guestbook.

Sincere thanks!

By Ladybug4869
Posted October 7, 2008 at 11:45 pm
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I liked your page. I watched some of your videos also. I tried signing the guest book, but having problems with my internet tonight. My name is Melissa. I live in Spring Hill, Kansas-south of Kansas City. My family is plagued by FALS. We have had 7 people pass away, my cousin was just diagnosed last month so that will be 8. I was tested and found out I carry the SOD1 A4V gene. It makes me sad to know I carry this and now my children might eventually get this. I just found Inspire website last week. Anyway, wanted to let you know I enjoyed your website!

By bonniec
Posted October 8, 2008 at 8:33 am
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Steve,

I am sorry for your situation, but I want you to know you are not alone. I worked with a man who was diagnosed in 05. As soon as he was dx, his wife began abusing him. (she was very controlling before that). When he became unstable on his legs, she began to push him whenever she would get angry or frustrated. This would cause him to fall, then she would leave him lying on the floor. He finally decided to leave her, and I am now his caregiver. He often says that without getting out of that he surely would have died by now. We go places he enjoys, parks, beaches, the mall, etc.

He got a PEG in Dec. 06 because he was choking a lot. It had to be stress because he now eats whatever he wants. Chokes seldom. He is progressing, but at least he is enjoying the life he has left without the stress, and complications of his ex.

Keep up your spirit, and bless you. I have nothing but respect and love for all the PALS.

Have a blessed day

By swhite-geo
Posted October 8, 2008 at 9:08 am
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Hi Melissa,

I can't imagine multiplying my situation by 8 family members...I pray for a cure constantly, and also that God give you strength, courage and perseverance through this today and every day! Thanks so much for your reply. I hope you're already a member of patientslikeme.com, an invaluable resource!

God bless you!!

By swhite-geo
Posted October 8, 2008 at 9:14 am
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Bonnie,

He is surely blessed to have you...how brave you are to step up for him! There is surely a beautiful, radiant pair of wings awaiting you one day!!

Sincerely,

Steve

By bonniec
Posted October 8, 2008 at 11:32 am
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I have to admit, when going into this I had no idea what I signed up for, but the gratification I get when he reaches out to me, and says 'thanks', is worth it all.

Where are you located? We are in Jacksoville FL, moved here from Dallas after his divorce was final. He needed to get away from that negative.

Keep your good spirit, and thanks for the kind words.

By Smilef
Posted October 8, 2008 at 11:38 pm
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I am very sorry to hear about you ex. Being a sister of a brother that just passed away in Jan 08 of this terrible disease it upsets me to see that someone could miss treat someone in need. My brother taught all of us so much. The most important was that you can not take life for granted. I would not change a thing. If he was around I woul still take care of. I surely miss giving him medicine and everything else that came with the caregiving. It does take someone special to be able to take care of someone. I am truely sorry but you are a better persson without her. If you want to talk email me directly at Smilef@aol.com

By greensmile
Posted October 9, 2008 at 6:56 pm
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hi there
i'm so sorry to read what you went through.no person in any situation should be abused physically or emtionally.you did well by getting away from it.i did the same as my eldest sister has hurt me emotionally and has said some pretty cruel things,so i just abstain from any contact what so ever.i'm here if you want to talk to a fellow pals.G-d bless and hugs to you from...me the green smile :)

By imagmaw2
Posted October 30, 2008 at 10:06 am
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do not be discouraged because everyone is just not into caregiving for als patients. I am the main caregiver of a former spouse. It has taken a whole village. People ask me why do I put myself through this. It has been difficult since our daughter and son can not be here for the duration.

The children and grandchildren, nieces and nephews all have a hand. Whether it is emptying urinals, shopping for groceries etc. Neither of us remarried, we had our own lives. Sometimes I am depressed, sometimes I am bitter yet here I am. I have spent the night at hospital stays, go to Dr. appts, get prescriptions filled, talk to social workers etc. I have coordinated caregivers, which give me my "me" time. A mere two hours for a vet. We had to fight for that. Then we had to accept an agency that to us is not the best.

Yes, maybe your wife just could not do it. I feel that way whenever I have to do the "bedpan" routine. We are all human and it is very hard.

Try to understand that it is a difficult choice for someone to make. The task gets harder as the disease gets worse. You have others that are helping you and God is your ever present help. He will always send you angels that can make your road a lot easier. Be encouraged. God bless and keep you.

By Steph09
Posted January 17, 2009 at 1:55 pm
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My brother, who is 52, was just diganosed with central component ALS. I knew it was coming. I had just watched my husbands favorite cousin die in 6 months from ALS. We buried him in the late spring of 2008. He and my husband were inseperable. Mike was 60. It moved through him like a California wildfire. My brother has a positive attitude but is also in denial. I have tried to encourage to go ahead and apply for SS Disability so he can get some assistance. He says maybe he will plateau where he is and maybe there will be a cure. Um, right. Being positive and realistic are two different things. He keeps falling. He has hurt himself a couple of time pretty badly. I sent him canes and have encouraged him to use them. He says he needs to "practice" in the house. Practice? Good grief! What's going to be the hardest about this is the fact that he lives 2 states away. I just can't believe that this is happening. On September 11, 2008 my 74 year old mother had a heart attack so I worry about her health as well. She lives in NC, as do I, and my brother lives in WV. He is my only sibling. My father died in 2000 of cancer. I never thought I would be the last one alive in my family. It just breaks my heart to lose my brother this way. I pray to God every day for a miracle. Even if that miracle is one more day then more day then one more day.

Welcome to Inspire!

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