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Stella78

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Hi all, my name is Mari and I'm Finnish. I lost my mom to ALS on Nov 17th. She had an Alzheimers diagnosis on July 2017 as we took her to memory tests as she didnt seem to remember everything as normal and did not cook or do gardening anymore nor cleaned the house as usual. She was diagnosed with Alzhmeimers and we thgought that explained everything. But this fall she seemed to be losing all her muscle powers in her hands but she keeped on walking with the walker. She lived alone so we were worried as her memory didnt get worse but everything else did bit by bit.

I lived this time in Italy and my mom lived in Finland. She was tooked in hospital many times for somekind of attacks, I think back later that maybe she couldnt breath well but with FTD couldnt explain herself. The nurses and doctors put it to Alzheimer symptions and panick attacks and sent her home.

I visited her late October and firs days of November she was sent back to hospital as the home services found her at home that she couldnt hold her head up. She was taken to a unit taking cure to Alzheimer patiens where afte many request she was visited by two neurololgy doctors who confirmed she had someting bad and fast forward going. She had had also varios times low oxygen levels but nobady paid any attention to this. She was then transferred to another unit taking care of older people, she waw 73.

From there she was found one day not able to wake up, this was caused by breathing problems and high CO2 levels. She was with taking to the neurology intensive care unit where she was for 3 days, sometimes she woke up and could even talk to us and smiled. She was so brave. But Friday 16 the doctors told that she had ALS and she would have only a few days time left, then day after doctors told that CO2 levels where too high and they could not do anything so they told they would remove the oxygen mask and she would not wake up anymore. But when they removed the mask she came conscius at some level, I saw her suffering and missing air and it was terrible, the doctors gave for morphine as we asked and something else that calmed her and in a small amout of time she just stopped breathing.

I can never forget this terrible experience. And how no doctor did not realize that she had ALS. Thinging back she had so many symptoms. And she had to survive with this terrible decease without any help. She compleided many times her hands and her feet but never said anything about breathing problems.

I keep on thinkig how she felt and why she didnt say anything. Didnt she understand because of the FTD what was going on? There are so many questions we will never have answers in her case. And we miss her terribly, I was supposed to to spend Christmas with her with my kids she loved so much. Never saw this happening!

Sorry for the mixed explanation, it is so hard now and English is not my mother language either. And thank you for understanding and for this active forum!
 
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ShiftKicker

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Stella-

I am so sorry for the loss of your mother. I don't have the appropriate words to express my sympathy for both the struggles your mum had and for the regret you have described in your post. You have found the right place- there are wonderful people here who know the regret you are confronting and can empathize with you.
 

KimT

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I'm so sorry for what your mom went through and I'm sorry for your loss.

I know your mother would want you to have joy in your life and give your children a nice Christmas.

You're welcome to stay here as long as you need. We are here for you.
 

lgelb

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Very sorry to hear about your mom, Mari. You did what you could for her, and she died knowing that and of your love. And she will always be with you in memory, these holidays and beyond.

Best,
Laurie
 

Stella78

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Dec 20, 2017
Messages
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Lost a loved one
Country
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Thank you all. It makes it hard that we didnt now anything about ALS before a little before she passed. So we had to deal with her passing and hearing about the ALS at the same time and I guess it takes time to get pass all this. It helps me to learn here more of this decease that took her from us and to write with others that are experiencing the same.
 
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