My Husband Had Als

he died on october was the worst three years of our lives.  he was difficult, and sad, and most of the time, caring for him was like dragging him through life, because he was so uncooperative.  my children live out of state, and although his mother and brother live nearby, they were no help at all.  the worst of it, is that my husband never changed the beneficiaries on his life insurance, so my in laws got all the money, and refuse to talk to me, because i asked them for it.  my youngest is a senior in college, and i am strapped for cash, but my in laws won't even listen to me.  i don't believe my husband intended for things to turn out the way they did, but i can't help being angry for the pickle i am left to deal with.  i have no other parents died when i was young and i am an only child.  i am not scared, just really much so that i feel numb.  therapy helps, but it's sort of like the visiting nurse commercial.....where they say....blah blah blah what?  i know i am whining.....but i just don't understand what motivates people to behave so selfishly...i took care of my husband at home until he died in a hospital bed in my living room with me and his health aide at his sides....he refused a feeding tube, ventilator, or any assistive technology until the end , and now i am touted as the bad guy......i don't think my inlaws have even visited my husband's grave yet....but they are willling to take the money!!!!  now i feel like i am lost at sea without a compass...

dealing with als was really times i think it was a toss up as to who had it worse because my husband just shut down, and gave up.  i felt like i was the only cheerleader for a team that didn't even show up for the game some days.  then again, i can't imagine how it must have been for the poor guy to lay there,  unable to scratch an itch when he had one, unable to tell his kids he loved them when they called....unable to put his arms around us when we hugged him.

one day, i brought home a kitten.....we never had a pet in our son has husband didn't like cats, but a dog was too much work.  when the kitten got over being frightened i put it in my husband's lap, and picked up his arm and helped him stroke it.....the smile on his face was priceless!  i use to put treats under my husband's hands so the cat would snoop under it to get the treat...needless to say...they became inseparable. .. now, every time i play back the answering machine, LG (the cat's named lou gherig) jumps up on the table to hear the messages.....i think it's the cat's way of looking for him. 

we had a good marriage, and had our ups and downs, but we were just hitting our stride when he was diagnosed...the last child out of the house at school, we were just getting was like we both got punched in the face.  we hid in the house holding each other and crying for a couple of days...then, came out and tried to have a normal life.  little by little, it all came crashing down, until a terrible fall landed him in the hospital, and the doctor said he had to stop working because he was a danger to himself.  that's when he gave up...when he had to stop working.  and he told me that the only reason he had to stop, was that i was over reacting.  he couldn't speak, walk. or write, and i was making too much of it.  from there he went downhill rapidly, and refused any assistive devices, including oxygen, even when he had panic attacks and insisted he needed to sit in front of the opened front door for air, in winter.  he separated medication from the food it was mixed with, so we could not sedate him.  all he did was watch tv.... i turned the living room into a hospital room, and slept with him until i started having nightmares that i would wake up next to a corpse.  then i moved back into our bedroom, with a baby monitor.  as i write this, i am just now realizing what a toll this has taken on me.  i am gonna stop here, before i wear out my welcome......but let me just say to the caregivers of PALS out there....i know the hell you are living...hang in there......i pray for you that it ends the way you both want it to.

2y2bw 2y2bw
2 Responses Mar 26, 2009

my heart breaks for you. a friend of ours has the same disease and we are saddened by him everyday. I know the saying is "you think you have it bad until you hear someone elses troubles". My husband died 2 weeks ago today after being in a motorcycle accident in May. I had 10 months with him and wanted to spend every moment with him. I miss him so, and i am having a hard time remembering everything about him. I wish my memory comes back about him. I am having a really hard time, and i can see you are having heartaches also. I am sorry for your loss too.

I am so sorry to hear about your lost! The following helped me alot when I had something like this happen to me:<br />
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What Hope for Dead Loved Ones?<br />
“If a man die, shall he live again?” asked the man Job long ago. (Job 14:14, King James Version) Perhaps you, too, have wondered about this. <br />
How would you feel if you knew that a reunion with your loved ones was possible right here on earth under the best of conditions?<br />
Well, the Bible makes the promise: “Your dead ones will live. . . . They will rise up.” And the Bible also says: “The righteous themselves will possess the earth, and they will reside forever upon it.”—Isaiah 26:19; Psalm 37:29.<br />
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To have real confidence in such promises, we need to answer some basic questions: Why do people die? Where are the dead? And how can we be sure they can live again?<br />
Death, and What Happens When We Die<br />
The Bible makes it clear that God did not originally intend for humans to die. He created the first human pair Adam and Eve, placed them in an earthly paradise called Eden, and instructed them to have children and extend their Paradise home earth wide. They would die only if they disobeyed his instructions.—Genesis 1:28; 2:15-17.<br />
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Lacking appreciation for God’s kindness, Adam and Eve did disobey and were made to pay the prescribed penalty. “You [will] return to the ground,” God told Adam, “for out of it you were taken. For dust you are and to dust you will return.” (Genesis 3:19) Before his creation Adam did not exist; he was dust. And for his disobedience, or sin, Adam was sentenced to return to dust, to a state of nonexistence.<br />
Death is thus an absence of life. The Bible draws the contrast: “The wages sin pays is death, but the gift God gives is everlasting life.” (Romans 6:23) Showing that death is a state of total unconsciousness, the Bible says: “For the living are conscious that they will die; but as for the dead, they are conscious of nothing at all.” (Ecclesiastes 9:5) <br />
When a person dies, the Bible explains: “His spirit goes out, he goes back to his ground; in that day his thoughts do perish.”—Psalm 146:3, 4.<br />
However, since only Adam and Eve disobeyed that command in Eden, why do we all die? It is because all of us were born after Adam’s disobedience, and so we all inherited sin and death from him. As the Bible explains: “Through one man [Adam] sin entered into the world and death through sin, and thus death spread to all men.”—Romans 5:12; Job 14:4.<br />
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Yet someone may ask: ‘Don’t humans have an immortal soul that survives death?’ Many have taught this, even saying that death is a doorway to another life. But that idea does not come from the Bible. Rather, God’s Word teaches that you are a soul, that your soul is really you, with all your physical and mental qualities. (Genesis 2:7; Jeremiah 2:34; Proverbs 2:10) Also, the Bible says: “The soul that is sinning—it itself will die.” (Ezekiel 18:4) <br />
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Nowhere does the Bible teach that man has an immortal soul that survives the death of the body.<br />
How Humans Can Live Again<br />
After sin and death entered the world, God revealed that it was his purpose that the dead be restored to life by means of a resurrection. Thus the Bible explains: “Abraham . . . reckoned that God was able to raise [his son Isaac] up even from the dead.” (Hebrews 11:17-19) Abraham’s confidence was not misplaced, for the Bible says of the Almighty: “He is a God, not of the dead, but of the living, for they are all living to him.”—Luke 20:37, 38.<br />
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Yes, Almighty God has not only the power but also the desire to resurrect persons whom he chooses. Jesus Christ himself said: “Do not marvel at this, because the hour is coming in which all those in the memorial tombs will hear his voice and come out.”—John 5:28, 29; Acts 24:15.<br />
Not long after saying this, Jesus met a funeral procession coming out of the Israelite city of Nain. The dead young man was the only child of a widow. On seeing her extreme grief, Jesus was moved with pity. So, addressing the corpse, he commanded: “Young man, I say to you, Get up!” And the man sat up, and Jesus gave him to his mother.—Luke 7:11-17.<br />
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As in the case of that widow, there was also great ecstasy when Jesus visited the home of Jairus, a presiding officer of the Jewish synagogue. His 12-year-old daughter had died. But when Jesus arrived at Jairus’ home, he went over to the dead child and said: “Girl, get up!” And she did!—Luke 8:40-56.<br />
Later, Jesus’ friend Lazarus died. When Jesus arrived at his home, Lazarus had been dead for four days. Although deeply grieved, his sister Martha expressed hope, saying: “I know he will rise in the resurrection on the last day.” But Jesus went to the tomb, ordered the stone to be removed, and called: “Lazarus, come on out!” And he did!—John 11:11-44.<br />
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Now think about this: What was Lazarus’ condition during those four days he was dead? Lazarus did not say anything about being in a heaven of bliss or a hell of torment, which surely he would have done if he had been there. No, Lazarus was completely unconscious in death and would have remained so until “the resurrection on the last day” if Jesus had not then restored him to life.<br />
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It is true that these miracles of Jesus were of only temporary benefit, since those that he resurrected died again. However, he gave proof 1,900 years ago that, with God’s power, the dead really can live again! So by his miracles Jesus showed on a small scale what will take place on earth under the Kingdom of God.<br />
When a Loved One Dies<br />
When the enemy death strikes, your grief can be great, even though you may hope in the resurrection. Abraham had faith his wife would live again, yet we read that “Abraham came in to bewail Sarah and to weep over her.” (Genesis 23:2) And what about Jesus? When Lazarus died, he “groaned in the spirit and became troubled,” and shortly afterward he “gave way to tears.” (John 11:33, 35) <br />
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So, when someone you love dies, it does not show weakness to cry.<br />
When a child dies, it is particularly hard for the mother. Thus the Bible acknowledges the bitter grief that a mother can feel. (2 Kings 4:27) Of course, it is difficult for the bereaved father as well. “O that I might have died, I myself, instead of you,” lamented King David when his son Absalom died.—2 Samuel 18:33.<br />
Yet, because you have confidence in the resurrection, your sorrow will not be unrelenting. <br />
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As the Bible says, you will “not sorrow just as the rest also do who have no hope.” (1 Thessalonians 4:13) Rather, you will draw close to God in prayer, and the Bible promises that “he himself will sustain you.”—Psalm 55:22.