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msde302

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CALS
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St. Paul
I think my mom is nearing the end of her struggle.

Up until last week, I was working full time as a teacher and then caring for her the rest of the time. I was lucky enough to find a young woman to be with her during the day while I was at school for the last few weeks. But by the time I would get home, she would be in so much pain (back and rear end) that she'd go directly into bed.

I've been home now 24/7 for the past week and she's gotten dramatically worse. The hospice nurse says sometimes people wait for things, and that she may have been waiting for me to be home with her.

She elected a long time ago not to get a PEG tube. For the past month or so she's been decreasing her eating. The past few days she's only had water and pepsi. I think I've mentioned this before, but she says she's not hungry, and that nothing sounds good to her. I'm lucky now if she gets 150-200 calories a day.

She panicked when the respiratory therapist brought the bi-pap back. She refused to wear it, even though her breathing has been really shallow. Then last night she was having trouble breathing and had me hold it to her face for nearly an hour (she refuses to strap it on). And again this morning she wore it. Very unusual for her.

She'd refused any Ativan or morphine. And then this past week started taking the Ativan at night. Then last night took a larger dose. And today she's had two (all within the OKed dosage). She's spent most of the past three days asleep.

Our hospice nurse said she'd talked to my mom about what would happen if she stopped eating. And she talked to my mom about taking a combo of the morphine and Ativan to help her with the breathing. She told me that my mom's breathing is markedly worse than last week.

She can't speak or move any part of her body. I think she's been ready to go for some time, but her body was holding up. I called my brother who lives in Colorado and he's flying in next week. I'm afraid to tell my mom because I'm worried she'll think I'm preparing for her to die and it will upset her.

This is much longer than I had anticipated. My whole point was to ask if someone could post that link to the site that talked about what to expect at the end of life. I feel like I need to know more about how to care for her.

THANK YOU!
Kaija
 

Jeannie

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Dec 19, 2007
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222
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01/2008
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NJ
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Vernon
Dear Kaija,
I just wanted to tell you what a great job you are doing with your mom. You both sound like such srong women. All I can say is be there to hold her hand and you will both be comforted. What a beautiful thing that you can be home 24/7 with her in her final days.
You are in my thoughts and prayers.
God Bless
Jeannie
 

Icanmanz

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947
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Uni
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Texas
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Tomball
Hi Kaija! When was your mom diagnosed'ed? How long has she had this disease? I read your entire post. I agree with the hospice nurse. These folks (Pals) they know when the end is near. I don't know what it is about this disease, I hate it so. My son, I know he endured a lot of discomfort, pain, and God knows what else. You see, he kept quite a bit from me, because he did not want to see me sad. He always told me that he hated what this disease was putting me through. It is so hard to deal with this disease, and you are always afraid of what to say to your loved one, because you do not want to hurt his/her feelings. I was always so afraid that I was going to say the wrong thing.

Kaija, almost everything that you have put in your post is what to be expected when the end is near. I wish I didn't have to tell you this. This board is about helping each other. I, as a person that has watched my son's illness progress, and I saw what it did to him, and was with him to the end, I am trying to help you with your questions. Again, I wish I could tell you different, but I can't. Stay by your mom's side as much as you can, I am sure she does not want to be alone. God bless you folks, and if it's your mom's time to go Home, I pray to God it happens peacefully. Keep us posted. Prayers and blessings your way.

Irma
 

msde302

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CALS
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US
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MN
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Thanks

Thanks for the words of encouragement, Jeannie and Irma.

Irma, my mom was diagnosed in March of 2007, but she'd been having symptoms since the summer of 2005. She'd had radiation for bladder cancer that they thought had damaged her spinal cord. They went with that diagnosis until her arms started to show weakness. Like your son, my mom is a genius at keeping things from me when it comes to her health. She had stage four cancer while I was living back East and I only found out because she was hospitalized and my aunt called. My mom "didn't want to worry me". She's only 59 years old. This whole thing really stinks. I appreciate your honesty about your experience with then end of your own son's journey.

Jeannie, I used to teach at St. Peter's Prep in Jersey City and I had a number of students from where you're from! I do miss it!
 

Peg B

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Messages
414
Reason
PALS
Diagnosis
10/2006
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US
State
Michigan
City
Flint
Hi Kaija,

Let me start with my heart felt condolences. What a hard time for you as well as your family. I am 59 and was DX with ALS in Oct 2006, but may have a different disease Multifocal Motor Neuropathy. My progression is very slow and symptoms started in 2002. So I am not like your mother. But I will relate as best I can. My daughters (2) are teachers to be. One is looking for a job and the other has returned to school for her MA and teacher cert. I am very proud of them and I am very proud of you.

I found a website that I think may be helpful with giving you information, as that is what you asked for, but Irma is correct and you are seeing the signs.

http://www.peacehealth.org/kbase/topic/mini/hw179630/overview.htm

I also wanted to share some things you may experience. I know you are with your mom 24/7 now and that is such a blessing for you both. My mom lived with me for her last 3 weeks and died on a Thanksgiving weekend about 15 years ago. But I was not in the room when she passed away. I had gone to the kitchen for a drink of water. I wanted to be there at that moment in her life, but knew I was setting myself up. You may or may not be right there. My husband and my sister were with her. My sister died after 12 years of cancer, and she chose her moment when me and my other sister and her daughters and husband were gone for less than an hour. Her friend was with her. So please be aware of that. It also seemed very true that we all had to give my mom and my sister "permission" to let go and that we loved them and would be OK so they could go on to their final rest.

I know you are mourning now and miss your mom so much already, but please know you just being there is such an incredible gift that you are giving her. God Bless you each step of the way and please know you are in our prayers. Sincerely, Peg
 

CindyM

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New England
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Hi Kaija - THis is a very hard thing you and your Mom are doing but you will never regret helping her through this last stage. My thoughts are with you both. Please remember that we are here for you! Cindy
 

fiddleplayer51

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Mar 24, 2008
Messages
337
Diagnosis
03/2008
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VA
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Harrisonburg
Hello Kaija,
This is such a difficult and painful time for you. I wish you strength, courage, and wisdom now.
You can't always know what the dying person wishes as far as choosing when to die is concerned, but during my years as a nurse at our local hospital and as a Hospice volunteer before that, I know that what Peg B said in her post above is true. Some people definitely choose to wait to die until everyone is out of the room. Sometimes you just won't know what the dying person wants or needs.
I wish you peace now and in the time ahead as you travel this part of the journey with your mother however the end happens. So many have travelled this road and it's such a lonely time. I hope you can feel comfort in knowing that we on this forum are thinking about you and your mother and wishing you courage and strength.
Take care,
Jane
 

msde302

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Joined
Jan 5, 2008
Messages
77
Reason
CALS
Country
US
State
MN
City
St. Paul
Thank you all for your kind words and support (and links!). This morning my mom actually asked that I stay with her in her room, which is unusual for her. I do appreciate the shared experiences about the end of your loved ones' lives. Especially about not being in the room when your loved one passed. It makes me more comfortable knowing that I shouldn't beat myself up if she ends up passing while I'm not right next to her. That may be exactly what she wants. I do worry that my brother won't get here in time, but my mom does know that he's coming. (Knowing her like I do, she's probably planning on passing before he gets here so he doesn't have to make two trips!)

My mom has requested cremation and she has stated that she doesn't want a memorial service, which I'd like to honor. I was raised Catholic (up until my parents got divorced, then my Catholic mom stopped going to Church). My mom is not a spiritual person (though I went on to get a masters in theology and I'm now a Campus Minister and social justice teacher at a Catholic school! Funny how that works!). So I was thinking about simply having an "open house" to celebrate her life. Where people can come and be with family and friends. I know it's really strange not to have a memorial service, so I'm wondering what other people may have done either in lieu of a memorial service, or in addition to?

Kaija
 

Icanmanz

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Messages
947
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PALS
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Uni
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Texas
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Tomball
Hi Kaija, I have been thinking about you and your mom. Pleased to hear from you. I am praying that God takes your Mom Home in a peaceful way. Bless her heart, she wants you by her side. Try to get your thoughts together as this is about to take place, it's gonna be hard to try and keep everything in order. What I am trying to say is that be prepared to face what is about to happen. Try to be strond. You are going to break down at one time or another. Your pain, your tears are going to be there. Do not be afraid to cry in front of her. You may do it if you wish, talk to her, keep telling her beautful things that would like to hear. Keep her comfortable. Ask her if she is comfortable, whether it be cold, warm, ask her if she wants to be positioned in a certain way. Soothe her, you may kiss her as often as you like, there is nothing wrong with that. Take a little break every now and then, and give her space, but do not leave her alone, unless she wants to be left alone. The one thing that we all want is for our loved ones to have a beautiful departure. Let her know that she has your permission to go Home, just tell her that you know she is tired, and she needs to go where there is no more pain. They like to hear little things like, "You will forever be in my heart. I know you are going Home to our Father, but I will still feel your presence where I go." Express your love to her repeatedly, they smile when you tell them that. Bless you Kaija, and I pray to God that He puts the right words in you to express to your sweet mom. We will be waiting for you here Kaija, go to your mom, and stay with her, before she will expire before you know it, and I know you want that last moment with her. That last moment means the world to everyone. I will be praying for you. God bless you both! Hope you don't mind my long post. Hugs to you and mom!

Irma
 

fiddleplayer51

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Joined
Mar 24, 2008
Messages
337
Diagnosis
03/2008
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US
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VA
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Harrisonburg
Kaija,
It's interesting that you mentioned that your mom doesn't want a memorial service. This is something of a dilemma for me because my PALS husband and I are not churchgoers. We used to attend a church but stepped away as questions of faith and the intensity of congregational life became issues for us. We wanted a more private life without the social obligation that belonging to a congregation seems to require. And too, I began having difficulty in being able to believe in God as a result of continually witnessing the pain and suffering such good people have to live with. (I've since come to terms with that though.)
But just this past weekend I spoke with my sister about this very issue of a memorial service when my husband dies. I'm not sure how to handle this since we no longer belong to a congregation. I don't want someone leading a service for my husband who didn't even know him.
I was raised in the Episcopal Church but became a Catholic in 1980. My second daughter (who was an infant at the time) and I were baptized at the same time. Then our family went to live at Koinonia Farm in Americus GA because we were interested in social justice issues and wanted to live a more intentional life. We also visited some Catholic Worker houses and farms. While at Koinonia I became interested in Mennonites and in 1987 my husband and I were baptized into the Mennonite church. It's been a real journey!
Good luck with your situation. Your open house sounds like a good idea!
Peace,
Jane
 

MarciaA

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Joined
Mar 13, 2006
Messages
116
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PALS
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US
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MN
City
Owatonna
Kaija,
My sister died Feb 28th of this year after living with ALS for about two years. She lived in St. Paul as well and had marvelous Hospice nurses that came in to check on her. She went downhill fast in the last 2 weeks of her life. Her breathing became much more difficult (she also hated the bi pap and refused to wear it...started using oxygen the last couple weeks). She had a PEG put in last fall so she was able to get nurishment from Ensure and could take her meds through the PEG. A couple nights before she died, the Hospice nurse came and couldn't really give us a "for sure" indication of time she had left, but did mention that we should take a look at chapter 8 of the hospice "manual". Mornings were always really bad the last week or so...very difficult to understand, very hard to wake up...took more doses of morphine and anti-anxiety meds to help with breathing...but then by around 11:00 or so was much perkier. The day she died the nurse was there for a visit and I think he just knew that it was time because he stayed right there with all of us as she died. She had been coughing a lot (had some phlegm stuck and didn't have the strength to cough it out)...and he gave her doses of morphine to relax her so that she was more comfortable and could breathe without worrying about the little rattle that popped up now and again. We were all there in the room when she died...but that's a huge personal decision...don't let anyone tell you that one way is better than the other! Like your mom, my sister was not religious, but we did have a memorial service for her. We had it in the Lakewood Memorial Chapel in Minneapolis (beautiful mosaics on the walls and ceiling) and it was exactly what she wanted. She actually helped us write the whole thing up in the week before she died. There wasn't a prayer...no hymns were sung...but for those in the crowd who were religious, they didn't come away wishing there had been more. People read things, spoke about her (those people were selected ahead of time so that the service didn't get carried away by people talking for hours), we had a big picture of her up in front along with one of the picture boards from the visitation the night before, her brother-in-law played a beautiful song on the native american flute, my friend played the harp (great acoustics in the chapel)...it was a perfect memorial to Kathy. The building is accessible, so many of the people in her ALS support group were able to come in their wheelchairs. People will probably need some sort of grieving "occasion"...but it doesn't need to be super religious if that isn't what your mom wants.

My thoughts and prayers are with you, Kaija...hang in there!

Marcia
 

hboyajian

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Washington
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Vashon
I am sorry your mom is so close to the end of her time with you. You sound like a very caring daughter, attuned to her emotional and physical needs. I am glad you are able to be with her. That is a precious thing.
I think the idea of an open house is just the thing since she has expressed she does not want a formal memorial service. That will give people a chance to come and share their memories of her with you and offer you and your family support
Sincerely, Holly
 

ilovemymom

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Joined
Jan 2, 2007
Messages
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Diagnosis
10/2006
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Happiest Place on Earth
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Big City
Sending you Strength

Hi Kaija-
Oh my heart is sending you all the strength and love it has as you spend time with your mother now.
I was where you are just two weeks ago - in the 48 hrs. prior to my mother's passing, I almost never left her side. I did everything I could think of to comfort her - recalled some of our favorite family stories, held her hand, laid in bed next to her, cued her sound machine to her favorite ocean sounds, kept the room very cool (the hospice nurse told me that her internal temperature gauge was broken and she would feel very hot), kissed her and told her how much I love her and that I can only hope to be half the mother she is.
I also told her that I would take care of my father and my sister, that we would be okay - we won't like it - but we'll be okay. About an hour before she passed, she squeezed my hand with strength she never even had before ALS, I told her that I understood and would be strong.
When I woke up Wednesday morning, I showered and did my hair and make-up so my mom would see me as the pulled-together woman that she raised. She held my face in her hands and the tears just streamed down my face.
When the hospice nurse arrived that morning, I left the room and sat in the sun on the patio. My father motioned for me to come in the house and told us she was gone. I walked into the room and laid next to her and told her that I am so glad she is free and then I never went into the room again.
We had a wonderful celebration of life last week. Many came over to the house after the non-denominational tribute to my mom. We ate, drank, cried and all recounted our favorite memories.
Making all of the arrangements prior to the memorial service was very comforting to me. I am happy to answer any more specific questions you may have. Now, two weeks later, I feel like I'm lost at sea - sometimes I'm up and sometimes I'm down. I'm just going to ride the waves.
I hope my experience helps you in some way - I will have your family in my heart.
meredith
 

judylyne

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Joined
Nov 18, 2007
Messages
66
Reason
Loved one DX
Diagnosis
10/2007
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US
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michigan
City
rothbury
My husband died 2 weeks ago. He just stopped breathing. No struggle or pain. We are going to have his memorial August 10. I wanted to have it when I didn't feel such intense grief. My brother is going to give the eulogy because he baptized him. I had him cremated and had a urn made of cherrywood and had a farm etched into it because he loved the farm. It looks like a small hope chest. His birthday was yesterday and we planted a burning bush in his memory. I know that it's going to be hard for you but you will know that you did the very best for her to make her last days as happy as possible. judy
 
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