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Memoriam wall
- We've created a memoriam wall to remember our friends
- If you know someone that battled ALS, please add them here
Update on PALS Krissy
- Status
dian_na
Distinguished member
- Joined
- Mar 8, 2009
- Messages
- 121
- Reason
- CALS
- Diagnosis
- 10/2007
- Country
- US
- State
- mo
- City
- saint charles
I'm so sorry, perhaps dreaming of boats will help you go through what your experiencing. I'm afraid her time is very close. Its okay to laugh and mourn . I am so glad you don't have to give the morphine. Here in Missouri the ALS families I have spoke to, first the nurses are never there, they are only called and never come in time, secondly the family has to be the one to increase the morphine.
Krissy needs you and holding her hand is something both of you will bennifit. Don't forget to put your arms around yhour children too, teens may not show immedietly how much they are hurting, they hurt by trying to escape the surrounding. They're going to need you too, Your doing so well, Krissy would be proud I know.
Krissy needs you and holding her hand is something both of you will bennifit. Don't forget to put your arms around yhour children too, teens may not show immedietly how much they are hurting, they hurt by trying to escape the surrounding. They're going to need you too, Your doing so well, Krissy would be proud I know.
maryhahnward
Distinguished member
- Joined
- Jun 17, 2009
- Messages
- 445
- Reason
- CALS
- Diagnosis
- 06/2010
- Country
- US
- State
- NC
- City
- Wilmington
It's good her sister will be there in the morning. I hope she makes it. It will help her grieve for her sister if she can spend time with her at the end.
Don't the kids start school soon in Florida? I teach in NC. Our students come back on 8/25. If I can be so bold as to offer advice I would encourage you to let their school guidance counselors, social worker, and their individual teachers know what has happened in your family. I teach high school and often see kids doing weird stuff when they are grieving. I started teaching at 45 years old (I know - what's wrong with me right?) and had a career in health care management prior to the move to public education. I use to oversee many programs for the elderly and have acquired some graduate degrees along the way. I bring a different perspective to teaching than many of my peers. I saw the end of life often in the field of aging and am comfortable letting the kids talk about it. The kids will need other adults to look out for them. As a teacher I would welcome an email, a phone call or face to face visit letting me know of this trauma. It will help you to know that others are looking out for them because you can't be everything for the kids but only you can give those adults the straight scoop.
I am happy to help in any way I can.
Don't the kids start school soon in Florida? I teach in NC. Our students come back on 8/25. If I can be so bold as to offer advice I would encourage you to let their school guidance counselors, social worker, and their individual teachers know what has happened in your family. I teach high school and often see kids doing weird stuff when they are grieving. I started teaching at 45 years old (I know - what's wrong with me right?) and had a career in health care management prior to the move to public education. I use to oversee many programs for the elderly and have acquired some graduate degrees along the way. I bring a different perspective to teaching than many of my peers. I saw the end of life often in the field of aging and am comfortable letting the kids talk about it. The kids will need other adults to look out for them. As a teacher I would welcome an email, a phone call or face to face visit letting me know of this trauma. It will help you to know that others are looking out for them because you can't be everything for the kids but only you can give those adults the straight scoop.
I am happy to help in any way I can.
Katie C
Very helpful member
- Joined
- Aug 1, 2009
- Messages
- 1,563
- Reason
- Lost a loved one
- Diagnosis
- 07/2009
- Country
- US
- State
- CA
- City
- San Jose
My "kid" was 25 when his dad died, and yes, counselling was important. Especially since he'd gone through a severe bout with depression several years back.
As far as how much morphine is "enough".... you're not euthanizing her. You aren't causing her death... the disease is doing that quite nicely on its own thank you very much. You, and through you the hospice workers, are helping her be as comfortable as possible. I still work at wrapping my mind around that. Keeping the kids close is good...but try to give them some space to go clear their heads when they need to. Last thing you need to do is start getting cranky with each other.
Glad you have a place that delivers take out! Pizza gets old after a while!
Take care of you.
As far as how much morphine is "enough".... you're not euthanizing her. You aren't causing her death... the disease is doing that quite nicely on its own thank you very much. You, and through you the hospice workers, are helping her be as comfortable as possible. I still work at wrapping my mind around that. Keeping the kids close is good...but try to give them some space to go clear their heads when they need to. Last thing you need to do is start getting cranky with each other.
Glad you have a place that delivers take out! Pizza gets old after a while!
Take care of you.
dian_na
Distinguished member
- Joined
- Mar 8, 2009
- Messages
- 121
- Reason
- CALS
- Diagnosis
- 10/2007
- Country
- US
- State
- mo
- City
- saint charles
Thinking about you and how your family are doing. I hope things are going as well as can expected in such a difficult time. So much to think about yet the mind seems numb.
dian_na
Distinguished member
- Joined
- Mar 8, 2009
- Messages
- 121
- Reason
- CALS
- Diagnosis
- 10/2007
- Country
- US
- State
- mo
- City
- saint charles
Been a while since you posted. I hope Krissy's sister made it this morning. My mom is in ICU I haven't slept much, I imagine you haven't as well. I'll pray for you to remain strong for yourself and others though its difficult and know its okay to cry and its okay to laugh.
Atsugi
Moderator emeritus
- Joined
- Jan 11, 2011
- Messages
- 5,921
- Reason
- Lost a loved one
- Diagnosis
- 12/2010
- Country
- US
- State
- FL
- City
- Orlando
Thanks, everyone. Krissy is stable. I’m the unstable one. That hasn’t changed in decades.
Special thanks to CJ, Mary and Patty for several reasons.
Ernesta and Susan deserve special praise for making me feel good.
I hope to meet Dianna in a boat forum and share photos and stories. Katie made me laugh, Georgia and Aly made me feel appreciated, Sadie and Mary gave me valuable info as always,
This post is dedicated to Jo in Alaska. And Dick.
Gina confused me with her post. She wrote “Mike, my silly friend, are a fantastic husband! We can sleep when this is over!” but I thought she wrote “We can sleep *together* when this is over.” So for a minute, I thought, wow, what a GREAT SUPPORT GROUP!
Although I can’t name everyone, I _can_ say to you that I’m really grateful to hear from you. I never had a “support group” before. Very wonderful.
Laura, I hope to provide some details you can use.
Sister/nurse Deb arrived this morning, and has been a God-send. Competent, confident, fun and gregarious. Brother Michael is flying in Wednesday. He’ll cry. Other sister Michelle will be here Friday. At that point we’ll have to move Krissy into a tent outside to make room. No word yet from remaining sister or parents. I know they want to be here and they are very much wanted. All the family peeps have visited recently.
I’m slowly “firing” the nurses (with their full cooperation). I realized that Krissy wants to be cared for by LOVED ONES, not by professionals. So the nurses have agreed to train us and then watch as we do everything.
Except bathing and bedpans. Too intimate. It’s only natural--we don’t want our family looking at our junk.
Who the hell invented that word, anyway? Maybe it’s a natural sociological synthesis of my generation’s sudden disrespect for chastity (born of the invention of the Pill and the explosion of Free Love) and this generation’s EZ BJ sexual mores. By diminishing the status of the genitals, Britney’s boys and babes have made the new promiscuity “no big deal.”
Philosopher offline, now. Back to Caregiver. But first, a message from our Technical Interest Group: Since morphine makes your stools pack up and refuse to go swimming in the Great Ceramic Swirling Pool, we’ve been issued a script for a stool softener.
Note to Caregivers: Use two pharmacies—one very close, and one that is open 24-hours. Sometimes you need one or the other.
If the stools don’t leap out on their own, you’ll have go in and get ‘em. Not hard to do. You can use the same oil on your gloved finger as you would use for your standard everyday anal sex.
Which reminds me: Hospital beds, while needed for that double jointed body shaping thing they do, are a little too narrow for two people. But with some diligence, I’m able to curl up next to my PALS and hug her, which is way more comforting than just holding her hand.
Rubbing the bare chest with a warm bare hand is good. That was experimentally proven with new-born monkeys. The ones rubbed lived happily—the ones not touched failed to thrive.
BIPAP in the last stage of ALS can push air down the wrong tube, resulting in painful distention of the belly. So heat up a giant towel in the dryer and put it on the round belly, then push/rub GENTLY side to side on the top of the belly (below the ribs) and also feed Ginger Ale—only a tiny amount, slowly—to induce gaseous relief.
Oxygen without humidity can painfully dry out and irritate the throat, causing coughing fits. But don’t put too much (distilled) water into the O2 generator’s tank—bouncing water drops can get into the narrow O2 tube.
Also, moisture can crawl up the tube. Then it will cool, and pool, and block the tube. So, if using a humidifier, raise the supply end of the tubing about 30” above the reservoir. This way, condensation can flow back into the reservoir.
To what level shall we adjust the humidifier? It’s a multi-variate conundrum: Both the body’s need and the humidifier’s output will vary as the natural weather and the air conditioner battle for parity during the day, so mankind is really just SOL on this question. Just know that you should NEVER just max the moisturizer and walk away. Like politicians and rabid dogs, the breathing apparatus bears watching at all times.
Warning: it turns out that our night shift nurse never finished school. She’s a career administrator. Not enough knowledge, training, experience or confidence. Her expertise is in watching the patient, then picking up the phone if something comes up. I told the Hospice of the Comforter to send an RN, but they sent her back for an encore, instead.
In the morning I’ll complain to the Orlando VA Fee Basis section’s Chief Medical Officer. They are responsible for selecting and approving the hospice provider and then paying the bill. (Coincidentally, I work in that office!)
Wordy post. Provocative, to put it politely. If anyone reads this, someone’s gonna complain. Ciao, baby.
Special thanks to CJ, Mary and Patty for several reasons.
Ernesta and Susan deserve special praise for making me feel good.
I hope to meet Dianna in a boat forum and share photos and stories. Katie made me laugh, Georgia and Aly made me feel appreciated, Sadie and Mary gave me valuable info as always,
This post is dedicated to Jo in Alaska. And Dick.
Gina confused me with her post. She wrote “Mike, my silly friend, are a fantastic husband! We can sleep when this is over!” but I thought she wrote “We can sleep *together* when this is over.” So for a minute, I thought, wow, what a GREAT SUPPORT GROUP!
Although I can’t name everyone, I _can_ say to you that I’m really grateful to hear from you. I never had a “support group” before. Very wonderful.
Laura, I hope to provide some details you can use.
Sister/nurse Deb arrived this morning, and has been a God-send. Competent, confident, fun and gregarious. Brother Michael is flying in Wednesday. He’ll cry. Other sister Michelle will be here Friday. At that point we’ll have to move Krissy into a tent outside to make room. No word yet from remaining sister or parents. I know they want to be here and they are very much wanted. All the family peeps have visited recently.
I’m slowly “firing” the nurses (with their full cooperation). I realized that Krissy wants to be cared for by LOVED ONES, not by professionals. So the nurses have agreed to train us and then watch as we do everything.
Except bathing and bedpans. Too intimate. It’s only natural--we don’t want our family looking at our junk.
Who the hell invented that word, anyway? Maybe it’s a natural sociological synthesis of my generation’s sudden disrespect for chastity (born of the invention of the Pill and the explosion of Free Love) and this generation’s EZ BJ sexual mores. By diminishing the status of the genitals, Britney’s boys and babes have made the new promiscuity “no big deal.”
Philosopher offline, now. Back to Caregiver. But first, a message from our Technical Interest Group: Since morphine makes your stools pack up and refuse to go swimming in the Great Ceramic Swirling Pool, we’ve been issued a script for a stool softener.
Note to Caregivers: Use two pharmacies—one very close, and one that is open 24-hours. Sometimes you need one or the other.
If the stools don’t leap out on their own, you’ll have go in and get ‘em. Not hard to do. You can use the same oil on your gloved finger as you would use for your standard everyday anal sex.
Which reminds me: Hospital beds, while needed for that double jointed body shaping thing they do, are a little too narrow for two people. But with some diligence, I’m able to curl up next to my PALS and hug her, which is way more comforting than just holding her hand.
Rubbing the bare chest with a warm bare hand is good. That was experimentally proven with new-born monkeys. The ones rubbed lived happily—the ones not touched failed to thrive.
BIPAP in the last stage of ALS can push air down the wrong tube, resulting in painful distention of the belly. So heat up a giant towel in the dryer and put it on the round belly, then push/rub GENTLY side to side on the top of the belly (below the ribs) and also feed Ginger Ale—only a tiny amount, slowly—to induce gaseous relief.
Oxygen without humidity can painfully dry out and irritate the throat, causing coughing fits. But don’t put too much (distilled) water into the O2 generator’s tank—bouncing water drops can get into the narrow O2 tube.
Also, moisture can crawl up the tube. Then it will cool, and pool, and block the tube. So, if using a humidifier, raise the supply end of the tubing about 30” above the reservoir. This way, condensation can flow back into the reservoir.
To what level shall we adjust the humidifier? It’s a multi-variate conundrum: Both the body’s need and the humidifier’s output will vary as the natural weather and the air conditioner battle for parity during the day, so mankind is really just SOL on this question. Just know that you should NEVER just max the moisturizer and walk away. Like politicians and rabid dogs, the breathing apparatus bears watching at all times.
Warning: it turns out that our night shift nurse never finished school. She’s a career administrator. Not enough knowledge, training, experience or confidence. Her expertise is in watching the patient, then picking up the phone if something comes up. I told the Hospice of the Comforter to send an RN, but they sent her back for an encore, instead.
In the morning I’ll complain to the Orlando VA Fee Basis section’s Chief Medical Officer. They are responsible for selecting and approving the hospice provider and then paying the bill. (Coincidentally, I work in that office!)
Wordy post. Provocative, to put it politely. If anyone reads this, someone’s gonna complain. Ciao, baby.
susanf
Senior member
- Joined
- May 26, 2011
- Messages
- 648
- Reason
- PALS
- Diagnosis
- 06/2011
- Country
- US
- State
- fl
- City
- Palm Harbor
Mike,
First I want you to give Krissy my love, second, you need to take care of yourself and the kids. Start delegating to her family jobs to keep her happy and comfortable. Nobody takes care of a loved one like family.
You are a true example of what love is. Actions speak louder than words. A cliche, but boy is it true. Pat yourself on the back, people like you are far and few between. I'm one of the lucky ones too. My husband is a caregiver just like you.
You are all in my prayers. I know this really sucks.
Susan
First I want you to give Krissy my love, second, you need to take care of yourself and the kids. Start delegating to her family jobs to keep her happy and comfortable. Nobody takes care of a loved one like family.
You are a true example of what love is. Actions speak louder than words. A cliche, but boy is it true. Pat yourself on the back, people like you are far and few between. I'm one of the lucky ones too. My husband is a caregiver just like you.
You are all in my prayers. I know this really sucks.
Susan
maryhahnward
Distinguished member
- Joined
- Jun 17, 2009
- Messages
- 445
- Reason
- CALS
- Diagnosis
- 06/2010
- Country
- US
- State
- NC
- City
- Wilmington
Mike,
Maybe its because I married a guy who was a marine who taught me words I never new existed and sees the world from a different angle than most or maybe its because I am half crazy myself - your post cracked me up, laugh out loud kind of funny. You would fit right in around our crazy family. My daughter is going to invent a food slingshot to feed her dad when he can't use his hands anymore...and he thinks he is going to get two Swedish blondes with big boobs to help him pee...and I said----not over my dead body - he was going to get Nurse Rachett if he kept that kind of talk up.
Thinking about you and Krissy and the family, thank you for keeping us updated.
Maybe its because I married a guy who was a marine who taught me words I never new existed and sees the world from a different angle than most or maybe its because I am half crazy myself - your post cracked me up, laugh out loud kind of funny. You would fit right in around our crazy family. My daughter is going to invent a food slingshot to feed her dad when he can't use his hands anymore...and he thinks he is going to get two Swedish blondes with big boobs to help him pee...and I said----not over my dead body - he was going to get Nurse Rachett if he kept that kind of talk up.
Thinking about you and Krissy and the family, thank you for keeping us updated.
HelenL
Very helpful member
- Joined
- Dec 17, 2010
- Messages
- 1,602
- Reason
- PALS
- Country
- US
- State
- MA
- City
- Southborough
Mike, loved your long post, it's good that the family is coming... maybe you can take a nap or take the kids out of there for a while... Saying prayers for you and Krissy...
Wish I knew I could count on my hubby for help when I need it, but since he took over last week's ALS meeting with all about himself talk, and was basically (nicely) told that he needed to work on his issues (which are not ALS), and let us work on the ALS ones... I'm putting my money on one of my SIL's!
Wish I knew I could count on my hubby for help when I need it, but since he took over last week's ALS meeting with all about himself talk, and was basically (nicely) told that he needed to work on his issues (which are not ALS), and let us work on the ALS ones... I'm putting my money on one of my SIL's!
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