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That is an amazing post Newsboy--and very positive which is so needed for most of us going through this kind of situation. I hope I can be like your mother and come out of this a stronger person--I pray daily for strength and to be smart (not sure if the smart will happen) but I try! Your wonderful post gives me hope.....God works in strange ways and obviously he brought you here to help with that strength I've been praying for! Thank you. Please don't be a stranger, we enjoy having positive people come here! I am very sorry for the loss of your father but am happy he is no longer suffering. Again thank you for taking the time to share your story!
Good morning dear friends!
Sometimes I think I'm getting this tube feeding down and other times it scares me--well DH is so controlling and of course cranky sometimes so that adds to the stress. I have come to learn from doing a lot of reading that the bad moody attitude is all a part of ALS for so many. Not sure why except of course to know you are dieing has got to change how you feel about lots of things. But I do the best I can and try not to let it get to me but it's to the point I dread waking up in the mornings. I lay in bed and pray and work very hard to imagine my new grand daughter in CA and how it would feel to hold her! That helps. I sure am blessed to have you all here with me--sure wish you all lived next door!
I regret just now finding this forum. My father passed away on Feb. 27 after a 4-year battle from complications brought on by brain tumor. He was diagnosed in March 2010 with a small benign tumor on the upper right lobe. Doctors said it was inoperable and, being benign, decided to treat it with medications. They didn't work. Within 9 months, he went from walking with the aid of a cane to being completely paralyzed on his left side.
In January 2011, two weeks after my parent's 50th wedding anniversary, he went into Piedmont Hospital in Atlanta for surgery. The neurologist who'd been managing his case up to that point gave him a good prognosis and said he'd be up and walking again within two weeks. Well, it didn't happen that way. Turns out, the tumor had grown to the size of a baseball was difficult to remove. After 8 hours of surgery, the lead surgeon -- one of the top brain surgeons in the Southeast -- came into the family waiting room, apologized and broke down in tears. He said he had done all he could do, and he was sorry.
Over the next 48 hours, my father suffered a massive coronary and a stroke. He was placed in an induced coma to try and give his body time to heal. Three weeks later, he finally regained consciousness, but by then both the insurance company and the hospital had decided there was no hope of him ever getting any better, and they advised us to place him in a home so that he could at least be comfortable until he died. My mother refused.
A couple weeks later, she managed to get him accepted into a program at Warm Spring Rehabilitation Institute, the same facility where FDR received treatment for his polio while president. The state of Georgia runs the institute, which is one of the finest in America, and they agreed to give him 3 weeks to "get better." If he showed any signs of improvement, they would recommend he be moved to another facility for further rehab. Well, he improved dramatically. His strength and motor skills both got better to the point that he was able to transfer to a private nursing / rehab center at the end of his stay. But sadly, the care in that facility (as is so often the case) was sub-par, and his condition began to slide.
That's when we, as a family, decided to bring him home. Beginning in June 2011, my mother employed CNAs 12 hours a day to help care for my dad. She spent hundreds of thousands of dollars out of their own savings and retirement to keep him alive. For awhile, his condition remained steady -- and even showed signs of slight improvement. Though we knew he could never walk again, my mother never gave up hope. She was his nurse-maid night and day, 24 hours a day. She insisted he go to therapy three times a week, and when he could no longer physically leave the house to do so, she hired therapists to come to the house. She purchased and tried every medical device and contraption in the book -- lift chair, Hoyer lift, motorized wheel chair, hospital chair, push wheel chair, hospital bed, a handicapped van with mechanical wheel-chair lift and access doors on BOTH sides.
Sadly, about a year ago, he suffered a setback. Just what, we'll never know. Another stroke? Possibly. But literally overnight, his mental state changed and he slowly began losing use of the few functions he had left. Last summer, he was officially placed on home hospice care. By Christmas, he was unable to even feed himself nor tell us if he had gone to the bathroom. (We had previously made the decision NOT to put him on a feeding tube). By January, full-blown dementia had set in. By February, he was curled up in a fetal position and unable to communicate.
Knowing that his final days were near, we as a family gathered together the last week of February, to be there 24 hours and support mother in this tough time. For several days, it was hit and miss. One day was awful, the next showed signs of hope. The hospice nurses said it could go on for a week, or another month. But the day was coming. Soon.
On the morning of Feb. 27, around 3:30, one of my sisters awoke freezing cold. She woke her husband, who went to get a blanket. My other sister, asleep on the couch, also awoke. They checked on dad. He was gasping for breath. They yelled for me to come up from the basement, where I was tossing and turning and completely unsettled. None of us had slept in days, but that night ... our mother was sound asleep, snoring in fact, in her bed, next to my father's hospital bed. We awoke her. We held his hands. We told him we loved him and it was OK to go. And he breathed his last breath.
I would be lying to you if I didn't say it was the most horrific thing I've ever experienced in my life. And yet, it was the most beautiful, peaceful, natural and freeing. My daddy, who had been suffering and in pain for so long, was free. He was home. And my dear sweet mother, who'd devoted 53 years of her life to this man, was also free. We cried. We prayed. We thanked God for the miracle that woke my sister up and allowed all of us, as a family, to be there around my father's bedside as he went home to see Jesus.
His funeral was on March 2, my birthday -- and it was amazing! The outpouring of heartfelt sympathy, the messages of goodwill and support from friends, family and casual associates far and wide has been powerful. My dear mother, bless her heart, has come out of this stronger than she's ever been. She's settled his estate, paid off the remaining medical bills, sold the handicapped lift van, gotten rid of all the medical equipment and, two weeks ago, went out and BOUGHT HER FIRST BRAND NEW CAR! Which is all to say, there is LIFE for a caregiver after the death of a loved one. In fact, I think that's part of God's perfect plan. And this I know beyond all doubt: When the time comes for each of us to need such care, we can take comfort in knowing there are loved ones in our lives who will put THEIR lives on hold to make our final days the best they can possibly be.
Thank you so much, Newsboy, for sharing your experiences with us. As heartbreaking as it must have been to watch your Dad's decline- happy for the ups, sorrow for the downs, it's inspirational to read of such a loving family that would do whatever it took, despite their own sacrifices, to ensure a loved one's care was the best it could be. And to be there with him at the last as well.
I pray that you and your family will find comfort and solace in your shared love for your Dad, and the memories you share, and the knowledge that he's still there in spirit, and suffers no more.
And your mother, kudoes to her! I know she carries her beloved in her heart as she moves on, knowing that she did her utmost to provide the care he needed, was never far from him, showing her love for him in every way possible. Your Dad died knowing he was well loved, surrounded by the love of his family.
That is an amazing post Newsboy--and very positive which is so needed for most of us going through this kind of situation. I hope I can be like your mother and come out of this a stronger person--I pray daily for strength and to be smart (not sure if the smart will happen) but I try! Your wonderful post gives me hope.....God works in strange ways and obviously he brought you here to help with that strength I've been praying for! Thank you. Please don't be a stranger, we enjoy having positive people come here! I am very sorry for the loss of your father but am happy he is no longer suffering. Again thank you for taking the time to share your story!
Good morning dear friends!
Sometimes I think I'm getting this tube feeding down and other times it scares me--well DH is so controlling and of course cranky sometimes so that adds to the stress. I have come to learn from doing a lot of reading that the bad moody attitude is all a part of ALS for so many. Not sure why except of course to know you are dieing has got to change how you feel about lots of things. But I do the best I can and try not to let it get to me but it's to the point I dread waking up in the mornings. I lay in bed and pray and work very hard to imagine my new grand daughter in CA and how it would feel to hold her! That helps. I sure am blessed to have you all here with me--sure wish you all lived next door!
Cyn, I wish we were closer too, to be able to take some of that load, and stress off your shoulders.
From what I've read about ALS, there is a "frontal lobe dementia" that they believe may be associated with some cases of ALS. It sounds like this may be associated with personality changes, moodiness, and hostility towards others, and some of the behavior you've described... Whatever the cause, that doesn't make it any easier for the caregiver, and there is no telling how much it contributes to the stress the caregiver already experiences from being in that situation.
I can only imagine your level of stress in your situation, Cyn, being essentially the only caregiver of an individual who, while you love him with all your heart, is still demanding and controlling, and well... you know, even as he is struggling with his declining health and abilities, and knowing what his eventual outcome will be. All this as you struggle to maintain a household and livelihood, with very little or no help.
Yet you do your best to maintain the best attitude and outlook you can all the while. I can't even imagine how difficult this would be, and can only encourage you to seek the help of those near you willing to help you with some of those tasks ( those great neighbors?), push the perfectionist in you aside long enough to let some of those little things on your list go for now, and get as much rest and relaxation ( these are probably foreign concepts to you at this point,,,) so you can recharge a little bit. And know that despite DH's criticisms and anger, understandably at his own condition, but unjustifiably aimed at you, you're still doing a yeoman's job at caring for him, showing your love and devotion, adapting and learning new things as you care for him. You have the right to be proud of yourself for that!!!
And while we're too far away to be of any physical assistance to you, just know that the good thoughts, prayers ( and sometimes advice, whether it's good or not, I don't know) are coming your way always. ((((Cyn)))))).
Well today was my first day to give DH a shave--he has some tough hair but with the new electric shaver I did pretty good. Not perfect but not bad.Going to give him his lunch feeding, finish packaging the couple of items we sold online then it's off to the post office and once we get back home it's his bath time. Just wanted to take a minute to share my success with the shaving thing...it had me very anxious. One more thing down!
TL, believe me I do read your posts and work on hearing your great advise...not always easy to do but I am trying. I have already checked into getting a grant to get some help here...not sure doing what honestly but just getting things set up for when it is really needed.
cyn and others, I am completely blown away by all you wonderful people. God Bless.
Cyn, if i may ask, where exactly do you live? Any where close to Toronto? Would love to take some load off your shoulder, even if its buying groceries for you.
Also, what exactly do you sell online and where can I find the link? My DH is always buying things online and maybe he will find something he needs from your link.
Ahhh Maila--what a sweet offer. Now I wish I did live near Toronto but I live in North Carolina. I am so blessed to find people who care so much. We sell a variety of items on ebay and you are welcome to check it out. If you Google Transmission and Levi heaven (my DH quirky name for his store--ha) it will come up. Not sure if there would be anything of interest for you but you sure are more then welcome to look! Trouble is we don't ship out of the USA--to many problems. Ebay does a global shipping but they charge crazy high shipping prices. But it is the thought that counts and your offer brought a much needed smile to my face so thank you! I feel so blessed to find people like you exist in the world! This thread has shown me just how many people like you are out there and it is amazing! Again, thank you!
Well today was my first day to give DH a shave--he has some tough hair but with the new electric shaver I did pretty good. Not perfect but not bad.Going to give him his lunch feeding, finish packaging the couple of items we sold online then it's off to the post office and once we get back home it's his bath time. Just wanted to take a minute to share my success with the shaving thing...it had me very anxious. One more thing down! TL, believe me I do read your posts and work on hearing your great advise...not always easy to do but I am trying. I have already checked into getting a grant to get some help here...not sure doing what honestly but just getting things set up for when it is really needed.
Awww Cyn, I know it's so easy for me to say all that, but much easier said than done in your shoes, if it seems preachy, let me know..... that would be annoying to me if I were in your shoes.. I know you're trying, and you've done wonderfully- not that it seems so to you when you're mired into the middle of what seems like s swamp.
I'm like everyone else here who wishes so much that they could do something to ease those many burdens of yours.......
Oh my TL..please keep the preaching coming---That is what I need to push me forward. And I can't think of anyone better then you to help me through it all!
Good morning friends!
I am so tired today--no sleep--awake from 2am to 5:30am with DH not being able to breath even on his breathing machine...he had a lot of phlegm and saliva causing him to choke and then he started to have a panic attack. Long scary night. Today we are suppose to go visit a fundraiser at our local fire department for MDA/ALS and since it's local my DH feel like we should support their efforts. I just hope he feels up to it now. I would love a whole day and night without problems!
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Your wonderful post gives me hope.....God works in strange ways and obviously he brought you here to help with that strength I've been praying for! Thank you. Please don't be a stranger, we enjoy having positive people come here! I am very sorry for the loss of your father but am happy he is no longer suffering. Again thank you for taking the time to share your story!
Be careful what you wish for....
) so you can recharge a little bit. And know that despite DH's criticisms and anger, understandably at his own condition, but unjustifiably aimed at you, you're still doing a yeoman's job at caring for him, showing your love and devotion, adapting and learning new things as you care for him. You have the right to be proud of yourself for that!!! 
