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Bujy

Active member
Joined
Sep 22, 2007
Messages
33
Reason
Loved one DX
Diagnosis
Family
Country
CA
State
BC
City
Vancouver
My MIL has been diagnosed with ALS. I am absolutely devastated. When I was growing up, we had a family friend with ALS and it was super difficult. The rest of the family is supportive, but they are not really acknowledging it. My MIL's sister also had ALS, but passed away from cancer.

Both her and her sister had a slow moving form. I'm not sure what it's called. Apparently it's very rare. I'm trying to find some more info, but not sure what to look for.

So, we've had the diagnosis now for almost a year. I'm pretty sure she was showing symptoms for at least a year before that. She is now in a wheelchair and has no movement in her legs. She is losing use of her hands.. The dexterity is just not there. A hard time with picking up cutlery and smaller objects.

She is starting to lose total control of her arm on occasion. This is a new development and is not happening often at all. When she reaches for something the arm just falls down unexpectedly.

One of my biggest concerns if the disease is so slow acting, will it always be slow acting. Trying to think of how to say this with tears in my eyes. Umm.. when she's not able to swallow or breathe easily.. will she have to suffer for a very long time. It just really scares me. I almost wish it were a little faster acting so when she gets to the end of her fight, she isn't in that state for longer than she has to.

So many things going through our minds. So many questions.

How can I make things easier on her day to day life? She just sits around in her nightgown all day and rarely goes outside. Often the blinds dont even open. Taking OTC sleeping pills quite often. She has gotten on some antidepressents that seem to be working great. And I probably should be thankful that she has something that helps her sleep. But, it's getting worse.

Her husband is elderly and has a hard time taking care of her. Yet, they dont want anybody in the house helping too much. Bathing is getting hard for them. In and out of the chair or off the couch.

I should probably call the local ALS centre and find someone to talk to. I'm sure there's local support.. There's gotta be.

Thanks for listening all. Not sure if this is the appropriate place to vent. But, it's super hard and I'm not sure what to do.
 

Bujy

Active member
Joined
Sep 22, 2007
Messages
33
Reason
Loved one DX
Diagnosis
Family
Country
CA
State
BC
City
Vancouver
I guess this should be in Caregiver Support Forum. My apologies. Perhaps a mod will move it for me.

thank you.
Bujy
 

brooksea

Legendary member
Joined
Sep 27, 2006
Messages
5,171
Reason
Other
Country
HM
Bujy,

Welcome to the forum. Sorry about your MIL. I'm not sure of the services offered in Canada, but there are plenty of pALS and cALS on this board in your neck of the woods.

I hope you are able to find some support for yourself as well as your MIL and family!

Good Luck!
 

CRF8

Active member
Joined
Dec 3, 2008
Messages
70
Reason
Loved one DX
Diagnosis
11/2008
Country
US
State
FL
City
Orlando
people in the house

sorry to be blunt, but they are going to have to get over the "don't want people in the house attitude" Get your self a house key. My mother had cancer & emphasemia and my Dad had a hard time with keeping the house up. I would hire a part time maid or trade person and go over there with them. get them in the house so they can do their job. Made my mother mad but thats too bad, it was for her own good. Check the dates on medicine, make sure they are taking it properly. Check for edible food in the refrigerator, food shop for them, make sure they drink enough fluids. Buy a shower chair and other aids. Make sure the utility bills are are on auto debit, so they dont have to mail letters.
 
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Bujy

Active member
Joined
Sep 22, 2007
Messages
33
Reason
Loved one DX
Diagnosis
Family
Country
CA
State
BC
City
Vancouver
I do have a house key. I am also going to Dr's appointments now. I want to start taking a more active role and seeing where they need help most. I will hop on over to the Caregiver side and introduce myself. I bet they'll have some great tips and info.

Cheers peoples.
 
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