Hello everyone, my first post

Maestra Daniela

New member
Joined
Jun 19, 2022
Messages
2
Reason
CALS
Diagnosis
03/2021
Country
US
State
CA
City
Alameda
Hi there!

My name is Danielle (age 39) and my husband (age 43) was diagnosed with ALS in March of 2021 although he started showing symptoms in 2019. It's been quite the journey and now we are in the later stages of ALS. He started receiving hospice care at home about a month ago and we are very pleased with the extra care being provided. As his condition worsens and his body changes by the minute ( as he put it the other day) , we are preparing for a discussion about his end of life wishes. Sigh..we have been having lots of talks over the past couple of months but lately we have both been avoiding it. Nothing about ALS is easy however having a community (like this forum) helps us all feel connected and I am grateful for that :)

There's so much more I could say here but I will leave it at that for now. I'm off for the summer (I'm a teacher), which is nice cause now I don't have to balance two full time jobs and I can just be the best caregiver for my husband.

I look forward to engaging in conversations on this forum so I can learn from you all and hopefully help a person or two along the way.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
14,270
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Welcome Danielle. It's good you have joined and started talking.
 

wishmobbing

Senior member
Joined
Dec 5, 2017
Messages
847
Reason
Lost a loved one
Diagnosis
07/2017
Country
DE
State
BW
City
Stuttgart
Hi Danielle, great you're part of this community already and we get to hear you voice. It sounds like you two have a good way of dealing with everything, including the big life and death talks. I would be worried if you where never able to breach the subject. But having talked about it already and maybe taking a step back because it's getting too real is something I can get behind.

So good that it's summer and you are not under twice the workload.
 

Jimi

Distinguished member
Joined
Sep 24, 2019
Messages
227
Reason
PALS
Diagnosis
02/2015
Country
US
State
CA
City
Torrance
Hi Danielle,
Sorry for your husband's difficulty. Not trying to say anything out of line and I respect you and your husband's decision. I obviously don't know anything about your particular situation. But I will throw this out there anyway.
Is your husband sure he is ready to go? ALS isn't a death sentence. I was diagnosed at 46. I thought that was it. But I'm still here and it is better than I expected. I'm not far from you. If I can answer any questions please ask. All the best,. Jim
 

Maestra Daniela

New member
Joined
Jun 19, 2022
Messages
2
Reason
CALS
Diagnosis
03/2021
Country
US
State
CA
City
Alameda
Hello Affected (Tillie), Wishmobbing and Jim,

Thank you all for replying to my message. Tillie, I agree it is good to join and engage in community groups (especially) when going through challenging times.

I reached a point where my friends could no longer offer support (they couldn't relate) and so I started seeing a therapist a couple of months ago. She has helped me guide these discussions that I would have otherwise been unable to approach because I tend to get lost in my emotions. Thank you for your kind words wishmobbing, it is great to have a summer break!

Jim, thank you for writing, from the beginning my husband has not wanted any devices which would prolong his life (breathing tube, feeding tube, etc). We revisited those wishes today in our talk and he still feels the same way. He is even resistant to his eye tracking device and powered wheelchair because he does not want to live with those kind of adaptations. As his wife, I respect his wishes because I wouldn't want anyone telling me how to navigate through ALS if I were in the same situation. I do appreciate you writing and I greatly respect your attitude towards living with ALS.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
11,187
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Welcome, Danielle. We will support you however we can.

Jimi, of course, "ready to go" is not the same thing as "discussion." It is an excellent idea for every PALS+CALS to have that discussion at least once, and well before time.

Nothing is set in stone until it is, but getting under the hood early provides a PALS with time to process changes in mobility, and a CALS with time to process what may be asked.

I don't think we should relate what one person considers adequate quality of life to go on, to anyone else's, though of course, we share helpful hints on making the most of what you have as long as you want.

Best,
Laurie
 
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