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mndireland

Distinguished member
Joined
May 17, 2008
Messages
123
Reason
Loved one DX
Diagnosis
10/2007
Country
IE
State
Ireland
City
Dublin
Hi all, Firstly I would like to thank all of you for listening to me over the last year, and all of your advice and help has been really appreciated, Ive learned more about this awful disease from all of you than from any doctor or hospital.

My mom went into hospital 3 days ago as her breathing was really bad, she had fallen and hit her head and the choking was getting much worse, I really thought that we would have to tell her she would be getting a peg which she doesnt want. Anyway we met the neurologist yesterday and I wish that was the news we were given but unfortunately it was to be much worse. She told us that my mam was at the late stages of the disease and that her breathing was very very bad. Yesterday my mam was sleeping most of the day and very confused when awake. She said the carbon dioxide in her was very high, and thats wat is making her so sleepy and drowsy. She said that she didnt think my mam would get through the next few days and they have offered her morphine. My mam asked the doctor was she dying and they told her that she was and talked through everything with her, my mam just ok and are you going to tell my kids and she said she was, and that was it. Its so hard to believe. Yesterday she sat up talking to everybody she's not even in the bed! The doctor said lying down is so uncomfortable for her, and that as she starts to fade they will give her the morphine to make her better.

She is sitting up laughing and joking with everyone, its so hard to believe that they are saying it will only be days. I just kept saying to the doctor that she isnt sick enough to die and i thought there was a lot more to come, she is stil walking! The doctor said there is no pattern and her breathing is really really bad, and with the build up of carbon dioxide she will fall sleepy then into a deep sleep she will most likely fall into a coma and pass that way, they said it is a very peaceful way to pass. My mam has told us that she is not afraid.

I had a really bad night last night and must have cried for 10hours, but going up to her today she is great, sitting up laughing and joking with friends. They said she is much better today and they want to keep her over the weekend and then they will let her come home with a nurse. I want her at home and at the same time Im absolutely terrified of the days to come!
I want to thank you all again, and i will talk again soon.
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
God bless your mam ... she is a remarkable woman. I hope we can all be that brave and strong when the time comes.

We are all with you in our thoughts and prayers.
 

brooksea

Legendary member
Joined
Sep 27, 2006
Messages
5,171
Reason
Other
Country
HM
Reaching across the ocean to give you and your Mam a big HUG!

So sorry this is happening. She sounds like a very courageous woman.

My thoughts are with you...
 

Zaphoon

Extremely helpful member
Joined
Aug 2, 2008
Messages
2,855
Reason
DX UMND/PLS
Diagnosis
08/2011
Country
US
State
Missouri
City
Springfield
Your mother is a very remarkable lady and she is blessed to have you by her side at this time in her life. Our thoughts, prayers and best wishes to you all in Ireland.

Zaphoon
 

brendapals

Senior member
Joined
Jul 6, 2008
Messages
953
Reason
PALS
Diagnosis
06/2008
Country
US
State
any
City
any
Our thoughts and prayers are certainly with you in Ireland.

Please get good rest this weekend and know you have support on here,
Keep the faith,
brenda
 

Jeannie

Distinguished member
Joined
Dec 19, 2007
Messages
222
Reason
Loved one DX
Diagnosis
01/2008
Country
US
State
NJ
City
Vernon
Please know that I am thinking of you~
I am so sorry you and your mom are going through this.
In friendship
Jeannie
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Sorry things aren't going well. Drop us a line when you have time.

AL.
 

ronwv

Member
Joined
Oct 16, 2008
Messages
13
Reason
Loved one DX
Country
US
State
WV
City
Morgantown
im so sorry you have to experience this. Best wishes and your mom is quite an inspiring woman.
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hi MN- I am sorry to hear this. Your Mom sounds like she is accepting and ready, but it is not easy on the rest of you, I am sure. My thoughts are with you tonight. Cindy
 

mndireland

Distinguished member
Joined
May 17, 2008
Messages
123
Reason
Loved one DX
Diagnosis
10/2007
Country
IE
State
Ireland
City
Dublin
Soo strong

Hi all, my mom pulled through the weekend and is doing so much better, its a miracle! The doctors and nurses are stunned. The neurologist said she didnt expect to see her after the weekend. They are holding off on the palative care as they dont think it could be days now but she said to us to not be fooled by this energy she has. She is still at the later stages and is dying. Her breathing is very low and she will still pass soon but they think it may be weeks now rather than days. This is good news as my mam is in such good form, she is sitting up talking, laughing, walking! She just doesnt look like she is dying. I know she has difficulty breathing and is very tired all the time, but fingers crossed for her as she is still smiling and laughing with friends and family.

I know this sounds strange but she and us are lucky. The young girl of 38yrs in the next bed has mnd and has done for 10years, she cannot move her head, mouth legs anything but has no breathing difficulty at all. My heart breaks for her. I know this is the case for a lot of you and I think you are all soo brave.
Prayers for you all x x
 

MtPockets

Very helpful member
Joined
Jun 1, 2006
Messages
1,528
Reason
PALS
Diagnosis
05/2006
Country
US
State
Ms
City
Gulfport
So glad to hear she is doing better. One thing ALS has done for me is allow me time to get my affairs in order. If there is anything your mom has left undone, maybe someone she wants to visit her so she can talk to them, now would be the time to do it. I do not mean this to sound cruel, God knows, but near the end there are things we all need to say to people and prepare. I'm just encouraging you and her to make the most of this time. Sounds like your mom is in the right frame of mind not being scared. I'm proud of her. God bless you both as you face the days ahead together. May it be a time of making good memories.
 

Zaphoon

Extremely helpful member
Joined
Aug 2, 2008
Messages
2,855
Reason
DX UMND/PLS
Diagnosis
08/2011
Country
US
State
Missouri
City
Springfield
Well said, Capt Al, well said.

Zaphoon
 

mndireland

Distinguished member
Joined
May 17, 2008
Messages
123
Reason
Loved one DX
Diagnosis
10/2007
Country
IE
State
Ireland
City
Dublin
Mums home

Hi all, well this time last week we got the call to go see my dying mum who maybe only had hours left. Today, she came home. Granted she doesnt look well she is really tired and down and not looking good, but shes home, where she wants to be with everybody close. Hospice are coming tommorow and doctors etc. So hopefully some help will be around. I was worried about taking her home but my sisters are staying here for a bit so I wont be alone, and the more i think im saying well she is dying, she is in the later stages, and even if its scary when it happens she wont be in such an impersonal space, she'll be here with family.
Will send updates soon
 

lostinlouisville

Distinguished member
Joined
May 10, 2008
Messages
242
Reason
Other
Country
US
State
ky.
City
louisville
I am glad your mom's home. I am sorry for what you going through, and want you to know my thought and prayers are with you guys. While your given her hugs slip in one for me too.

RENEE
 
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