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Old 10-09-2008, 09:31 PM   #1 (permalink)
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Default My Dad: How close is death?

Hello everyone!

I'm scared. I've done a lot of reading on this site, but hardly any posting. So here's my Dad's story (briefly.)

He was diagnosed at age 62 in August of 2006. He has Bulbar onset. It started with slurred speech. I miss the days when we would tease him that he sounded drunk! He got a PEG in January of 2008. He uses a BiPap continuously all day and night. Uses a suction machine very often. He has not left the house in months, although he can still walk - barely. He is very weak. I am his primary caregiver. I moved in next door to my parents 2 years ago and am a stay-at-home Mom to my 8 year old son and 3 year old daughter. Mom still works full time as she needs the income and benefits.

Anyway, Dad is having more and more trouble breathing and clearing his throat - even with the use of the BiPap and Cough Assist machine. He was on Hospice, but was just discharged this week because he wants to stay on Rilutek. He has been on Rilutek since his diagnosed. And Hospice admitted him knowing he was on it, but I think they must have thought he was going to go off of it or something? Anyway..... what is my question? I don't even know..... I just wonder how close he is to the end and how this will all go. He is still taking his feedings and water, so I imagine his body could hang on for quite some time? Will he just get weaker and weaker and go to sleep - or how will this go? At this point he seems scared and not ready to go. He hasn't been able to talk for well over a year, but he does type and "speak" with his LightRiter voice synthesizer.

I feel very blessed for the opportunity to be his primary caregiver and spend all this time with him now..... BUT..... it also scares me! Will his death come suddenly and traumatically while I'm alone, or will it happen slowly ? ? ? ?

I suppose only God knows the answer.... but would love to hear other personal stories.

Thanks for reading....
Cheryl

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Old 10-09-2008, 09:49 PM   #2 (permalink)
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Cheryl,
None of us can tell you how close your dad is to the end. All that I can suggest is that you tell him how much you love him and anything else that you want to say. With this disease we know that death is inevitable but it seems that we're never really prepared for it to actually happen. You're in my prayers.

Chris
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Old 10-09-2008, 10:04 PM   #3 (permalink)
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Default Blessings

Your dad is blessed for having such a loving daughter for his caregiver. You are giving so much in such a great way and also for your mom. This is all so heartwrenching and stressful for all of you, including your dad. I have been a caregiver for 6 clients (not with ALS) but Parkinson's, Emphyzema, cancer, who I assisted until their passing, even being there to comfort in the very last moments. My husband has ALS but is doing pretty well yet as his diagnosis was only a year ago. All I can think of to say to you is that it sounds like it will be only a matter of weeks...maybe even less. I am not there to really form any opinion, and you haven't given a very extensive report, but since Hospice was already involved, it sounds likely. I know this could be a touchy subject, but I advise that you urge him to eliminate Riletek now so that Hospice can come back. They can assist in your Dad's comfort and stress, and can advise you on all aspects of his care. They can make sure with you and your mom that everything is being done to make this time peaceful, and his wishes carried out. You haven't mentioned his wishes or your mom's. I am absolutely sure that he can "go" peacably" and with dignity... and in God's timing... that everything would be done to reverse his condition if possible, and nothing would be hastened on. Any problems in breathing or clearing the lungs is taxing the heart and you would want everything to be done that can be done. I think most anyone here would agree with me that it is too late now even for Riletek to make a difference anymore. It is great that he is home. Love him, and make sure you have no regrets. Bless you all.
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Old 10-09-2008, 10:48 PM   #4 (permalink)
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Hi cheryl. I'm sorry about your dad. I'll put in a link from Hospice that you can read when you are ready. It has helped many here understand what happens when the end is near.

http://www.hospicenet.org/html/preparing_for.html

AL.
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Old 10-10-2008, 09:10 AM   #5 (permalink)
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Thank you so much for the replies. This forum is really invaluable.... as I mentioned, I've been reading posts for quite awhile and now I need the support - and it's here! Thank you!
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Old 10-10-2008, 10:33 AM   #6 (permalink)
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Default My Dad

My Dad was diagnosed with ALS this past week. His symptoms started in February of this year and have been rapidly progressing. Started with slurred speech, swallowing, numbness in mouth and tongue and now muscle spasms in twitching. My Mom mentioned he has a few bouts of uncontrollable laughter (something funny would pop into his head and he would not be able to let it go), but I have not noticed it when I am around him. He sleeps all the time and night time is worse for him. He complains that when he puffs his cheeks out the air comes out his mouth.

The doctor told him in the first visit that he is in the early stages, but everything I read this looks like the end. Next week he has another EMG and it will show more. His EMGs in the past showed nothing. Does anyone know if maybe he is just protecting me and not telling me what is really down the road? I am scared but I want to know the truth. My Mom mentioned he is thinking about retirement because his job required a lot of commounication and right now that is not possible because his speech is declining.
How can I help him? My Mom is being strong, but I know she is sad. I just keep giving him love and staying positive. I live in NY and he is a 4 hour drive away. Should I consider moving home to be close to my family?

Any answers or thoughts are appreciated.
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Old 10-10-2008, 12:26 PM   #7 (permalink)
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Quote:
Originally Posted by Rock View Post
My Dad was diagnosed with ALS this past week. His symptoms started in February of this year and have been rapidly progressing. Started with slurred speech, swallowing, numbness in mouth and tongue and now muscle spasms in twitching. My Mom mentioned he has a few bouts of uncontrollable laughter (something funny would pop into his head and he would not be able to let it go), but I have not noticed it when I am around him. He sleeps all the time and night time is worse for him. He complains that when he puffs his cheeks out the air comes out his mouth.

The doctor told him in the first visit that he is in the early stages, but everything I read this looks like the end. Next week he has another EMG and it will show more. His EMGs in the past showed nothing. Does anyone know if maybe he is just protecting me and not telling me what is really down the road? I am scared but I want to know the truth. My Mom mentioned he is thinking about retirement because his job required a lot of commounication and right now that is not possible because his speech is declining.
How can I help him? My Mom is being strong, but I know she is sad. I just keep giving him love and staying positive. I live in NY and he is a 4 hour drive away. Should I consider moving home to be close to my family?

Any answers or thoughts are appreciated.
Rock, I responded to your questions over on the PBP forum.... take care,
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Old 10-10-2008, 06:48 PM   #8 (permalink)
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Hi, Rock ... I'm so sorry your dad has this diagnosis. I know how hard it is on him, and your mom and you. I hope you will get the answers you need on this forum. I know you will find total support.

It sounds to me like your doctor is right. Your dad is NOT near the end. Your dad seems to have "bulbar onset," which means only that the ALS is appearing first in his speech and swallowing, and other areas controlled by the bulbar area of the brain. His laughing is part of it; emotional expression is controlled by the same area, so some patients find themselves laughing or crying at things that aren't funny or sad, because of the effect the ALS has on those particular neurons. There is medication that will help with this. and help your dad stay on an even keel.

Here's the important part: People can live for years with ALS, whether it starts in their limbs or in the bulbar area. There is a woman on this forum who has bulbar onset, and she is in her ninth year after diagnosis. I have bulbar onset, too, which started in spring, 2006. My speech is really lousy now, and I have to be careful swallowing and I get short of breath, but I am still functioning, driving, keeping house, etc. It is spreading slowly into my limbs, but that is natural with ALS.

This is a hard disease to deal with, but it sounds like you and your mom will be a great support team for your dad. Hang in there, and stay hopeful,
BethU
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Old 10-10-2008, 07:56 PM   #9 (permalink)
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Default I have been where you are.

Quote:
Originally Posted by c1adelman View Post
Hello everyone!

I'm scared. I've done a lot of reading on this site, but hardly any posting. So here's my Dad's story (briefly.)

He was diagnosed at age 62 in August of 2006. He has Bulbar onset. It started with slurred speech. I miss the days when we would tease him that he sounded drunk! He got a PEG in January of 2008. He uses a BiPap continuously all day and night. Uses a suction machine very often. He has not left the house in months, although he can still walk - barely. He is very weak. I am his primary caregiver. I moved in next door to my parents 2 years ago and am a stay-at-home Mom to my 8 year old son and 3 year old daughter. Mom still works full time as she needs the income and benefits.

Anyway, Dad is having more and more trouble breathing and clearing his throat - even with the use of the BiPap and Cough Assist machine. He was on Hospice, but was just discharged this week because he wants to stay on Rilutek. He has been on Rilutek since his diagnosed. And Hospice admitted him knowing he was on it, but I think they must have thought he was going to go off of it or something? Anyway..... what is my question? I don't even know..... I just wonder how close he is to the end and how this will all go. He is still taking his feedings and water, so I imagine his body could hang on for quite some time? Will he just get weaker and weaker and go to sleep - or how will this go? At this point he seems scared and not ready to go. He hasn't been able to talk for well over a year, but he does type and "speak" with his LightRiter voice synthesizer.

I feel very blessed for the opportunity to be his primary caregiver and spend all this time with him now..... BUT..... it also scares me! Will his death come suddenly and traumatically while I'm alone, or will it happen slowly ? ? ? ?

I suppose only God knows the answer.... but would love to hear other personal stories.

Thanks for reading....
Cheryl
My father was diagonsed in Jan. 2002 and passed Sept. 2002. My father was only 45 when he passed, he was the 9th person in his family out of 3 grnerations. This worries me for myself and my kids. During dads 9 month downhill it progressed very quick. The night he pasted he had visisted with me and had just ate his favorite meal 30 mins prior. They feel his heart is what finally got tired of fighting, so it was quick for him. I am sorry to hear about your father. Spend as much time with him, love him, and tell him anything you need him to know do not let that time get past and regret it later in your life. It has been 6 years for me and I wish I would have told dad I loved him more. Good luck and best wishes for you and your family.
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Old 10-10-2008, 08:47 PM   #10 (permalink)
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I am so sorry to hear about your Dad. I just called my Mom, an ALS Hospice Nurse and she said Hospice cannot discharge you for being on Rilutek nor has she ever heard of that. But, her recommendation was to go off Rilutek because of its modest benefits and to have Hospice available to you for all it is worth. I realize battling with Hospice at this time is not the best use of your energy, but discharging him because of Rilutek is B.S.! That being said, if you don't have the time & energy to second guess their decision to discharge him, speak to your Dad about just going off it. He may be able to live comfortably for a good while so do not start thinking about the end. As others have told you already, what you have done, by being there through this horrible disease, has shown him more love than most people ever take the time to share with a healthy parent. I wish you the best that there can be and to say how amazing it is what you have done for your Dad. Peace.
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Old 10-13-2008, 12:31 PM   #11 (permalink)
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Default Thank you.

tinkerbell,
Thank you. We as a family decided Dad should go off Rilutek and Hospice is coming back today. Thank goodness! He's struggling with his breathing even more and today I gave him morphine for the first time.

dads1976frog,
Thanks for briefly sharing your story.... sorry about your Dad. He sure went quickly and soooo young.

Rock,
My thoughts and prayers are with you also. If you have the means and opportunity to move home with or near your folks, I highly recommend it. I will never regret - and feel totally blessed - to have had these 2 years with Dad. And also to be here for Mom. I can't imagine her going through this alone. I don't think your dad is near the end. My Dad had the uncontrollable laughter symptom too (I miss that now!) I would also encourage your dad to retire early unless he absolutely loves his job and it gives him something to look forward to... his time is precious now and he needs to do what he can physically handle that makes him happy.

Al,
Thank you for the link to Hospice. That was a very informational (yet sad) article to read. I appreciate that.

Chrissy and Marjorie,
Thank you for your replies also. I am very blessed to be here. Thanks for all the replies and support. It helps....

Thanks to all,
Cheryl
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Old 10-13-2008, 04:01 PM   #12 (permalink)
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Al that's quite an emotional link you provided and thank you for it. On the section about keeping a person warm with blankets when their skin is cooling I'm wondering why it says not to use electric blankets, any idea anyone.
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Old 10-13-2008, 04:40 PM   #13 (permalink)
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Cheryl,

I don't know that I have an answer for you. However, I also helped take care of my father when he was dying. He fought it for as long as he could, but died Dec 4, 2004. I know how hard it is to watch them daily and also how you much you feel like you need and want to be there for them despite how hard it is.

When my father died it was about 5:30 in the morning and my mother and I had only fallen asleep for just a little while and when we woke up he was gone. We had been up with him most of the night, just because we knew how bad he was and that there wasn't much time left. My father was on morphine, so I'm sure that helped ease the pain. The day before he died however we had the most amazing experience I could ever share with you.

My father was confined to bed before he died. I thought our case is a little different than the one you are experiencing; however our family carries one of the mutated genes that is know to be the most aggressive for of ALS.

You and your family will be in my thoughts and prayers.
Robin
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Old 10-13-2008, 06:04 PM   #14 (permalink)
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I am so sorry to hear about your Dad. I understnad the mixed blessing it it to be the primary caretaker.

My husband opted to go off Rilutek because he lost his taste buds. Once he was off they came back. I don't think this had any relevance to hospice. My dear husband passed away very suddenly just eight months after diagnoses. We had just returned from a vacation and he just passed. There is no way to know with this disease. Just treasure your time with your Dad. You are in my prayers.
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Old 12-30-2008, 12:45 AM   #15 (permalink)
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We lost Dad on October 15th, 2008. I guess it was a peaceful passing in his home with all of his family around him... hard to feel like it was peaceful when I miss him so much and I am so stuck in a horrible depression now. What a horrible disease.

Cheryl

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