Status
Not open for further replies.

Tanya

Member
Joined
Oct 12, 2008
Messages
11
Reason
Loved one DX
Country
US
State
Kansas
City
Weir
I first want to thank everyone for their quick response to my other thread and I'm not sure if I should be starting a new thread or posting on the old one, but, I have a question and am looking for a little insight. My sil was told by her doctors that she should not be living alone and is very independent. Is this because of the the depression or because she has ALS. She is only recently diagnosed and still is working. Her symptoms are weakness and slurred speech. They have put her on a drug to help slow down her symptoms from becoming more severe. Should she be looking for a roommate? I'm not sure that she's willing to do that yet. I feel that she would emotionally be happier doing what she is doing, but, I don't want her to fall or something. She admits to having some depression and can't believe that the human body can cry so much, but, she is trying to move day to day. Any suggestions on this? Thanks, Tanya
 

katekath

Distinguished member
Joined
Oct 2, 2008
Messages
148
Reason
CALS
Country
SGP
State
SG
City
SG
Is it possible to have someone check on her everyday, if she is not willing to live with someone else? I would think having someone else to live with her is a safer option since she is experiencing weakness in her body. In addition, she can have someone to talk to when she is depressed. Just my two cents.
 

Allnycole

New member
Joined
Oct 13, 2008
Messages
9
Country
US
State
IN
City
Elkhart
Tonya,

It appears that there are a lot of variations in the disease; however my experience with my family was that the progression of the disease went fairly quickly. Therefore my assumption about the doctor saying she should not live alone would be in the fact that as she progresses there may be things she will not be able to do for herself and she will need help. She could possibly wait if she is still functioning; however I would recommend that she start thinking about options. If she waits too long it may be difficult to get everything worked in the time fram it needs to be. However, keep in mind that as I stated my experience with family members was it progressed extremely fast. Our family carries the A4V gene mutation which is the most agressive one.

I don't know if that helps, but it is just my experience and thought. Also, I do agree with the other suggestion of someone checking in. Maybe she could start thinking of what she wants to do long term, but also work on building a support of people she can call on or who can check in on her while she can still be independent.
 

Tanya

Member
Joined
Oct 12, 2008
Messages
11
Reason
Loved one DX
Country
US
State
Kansas
City
Weir
Again, thanks for your responses. I am soooo glad that I found this forum and have been recommending it to everyone. I just need a little insight into this awful time we are having and I can't tell you how much that I appreciate you all. Tany
 

Zaphoon

Extremely helpful member
Joined
Aug 2, 2008
Messages
2,855
Reason
DX UMND/PLS
Diagnosis
08/2011
Country
US
State
Missouri
City
Springfield
Tanya,

It is my hope that your sil warms up to the idea that she may soon need some assistance with her day-to-day functionality. There is no telling what ALS will do next.

The progression may seem to be slow at one point in time and take off the next. If your sil insists on living alone for the time being, I would suggest checking on her regularly.

One thing about any debilitating disease, it will soon reduce the reluctance to ask for help.

Just my observations...

Zaphoon

(I feel as if I have been unmasked! Wright, don't give in to giving up your name!) lol ha!
 
Last edited:

L4dybugg

Distinguished member
Joined
Sep 4, 2008
Messages
148
Country
US
State
TN
City
Knoxville
Zaphoon

(I feel as if I have been unmasked! Wright, don't give in to giving up your name!) lol ha!

LOL
 
Last edited:

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Geez Zaph, I feel positively naked then.

AL.
 

Zaphoon

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

You were naked from the beginning! :-D

Now I know what Zoro and the Lone Ranger felt like when their masks were taken off. Only in my case, I took it off.

Zaphoon
(I can at least still pretend...)
 

comfortermom

New member
Joined
Oct 16, 2008
Messages
6
Reason
CALS
Country
US
State
IN
City
NewCastle
living alons

I first want to thank everyone for their quick response to my other thread and I'm not sure if I should be starting a new thread or posting on the old one, but, I have a question and am looking for a little insight. My sil was told by her doctors that she should not be living alone and is very independent. Is this because of the the depression or because she has ALS. She is only recently diagnosed and still is working. Her symptoms are weakness and slurred speech. They have put her on a drug to help slow down her symptoms from becoming more severe. Should she be looking for a roommate? I'm not sure that she's willing to do that yet. I feel that she would emotionally be happier doing what she is doing, but, I don't want her to fall or something. She admits to having some depression and can't believe that the human body can cry so much, but, she is trying to move day to day. Any suggestions on this? Thanks, Tanya

My daughter is alone during the day, while her husband is at work and kids are at school. Her ALS is very advanced. She has had it for 11 years now. She is either in her electric wheelchair or on the couch during the day. She does not want someone staying with her full time. She knows that if she calls, I will be there in a couple of minutes. If she is on the couch, unable to call me, I check in on her regularly. The frequency of checking in has changed, as her needs have progressed.

Make sure she has a way of contacting someone if she has a need. Falls are very likely. Wearing a contact button on her arm or around her neck would be a good idea, if she continues to live alone. When the disease was new to my daughter, everything could be just fine: then she would fall and hit her head........... Your sis MUST have a way to contact someone, in case of emergency. Other than than, for now, living alone is not an impossible option.
 

Allnycole

New member
Joined
Oct 13, 2008
Messages
9
Country
US
State
IN
City
Elkhart
Sorry, I have to comment. And, please realize that I am not trying to argue with anyone or offend anyone.

One thing I have learned through reading all the posts I've seen is that this disease has SOOOO many variations. I can't believe the differences that sometime people have. With that said, I would strongly suggest that the situation be really assessed well when deciding if your SIL needs someone to stay with her or not. I can only share my experience and I realize that appears to be very different from some who are on this site. Here is our experience as our family has the familial ALS.

My father is the person who has lived the longest after diagnosis. He was diagnosed on Mar 17, 04 and died Dec 4, 04. My grandmother was diagnosised July 3 and died Oct 16, and my uncle died only 7 weeks after being diagnoised. It was completely impossible for any of thee individuals to not have someone care for them 24/7 as they not only could not walk they were completely paralyzed to the point that even rolling over in bed, feeding themselves, or scratching their nose was impossible (not difficult, impossible). Now, I certainly hope that this is NOT the case for your SIL; however I would strongly suggest really assessing the situation, monitoring the situation as it progresses, and planning ahead as sometimes things happen quicker then you realize. Yes, there are many that live extensive years with this disease but unfortunately there are also many that simply live weeks or months and don't even make a year and many that probably fall between.

I certainly hope that I did not scare you or offend anyone. I HATE this disease as I have seen it take too many in my family. I helped care for my father when he was dying and it was the most heart wrenching situation I have ever been in. I know his changes happened daily and sometimes it even seemed to be hourly. Please monitor the situation and hopefully you will be able to tell if changes will happen over longer or shorter periods of time.
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
Allnycole, thank you for sharing your family's story. You have my deepest sympathy for your terrible losses.

We try so hard to look for hopeful news that I think sometimes we forget just how vicious this disease can be. I appreciate your message very much. It is so important that we be realistic as well as hopeful.

Blessings.
 

cukita99

Distinguished member
Joined
Jun 12, 2007
Messages
361
Reason
PALS
Country
US
State
tx
City
el paso
i wish i didnt need help, it would sure help me finacially. my 19 year old lives with me and doesnt work but i still hired help. my legs arms n speech are gone so i cant do a thing. my son cant bathe me or cook and so i needed help. i dont see how people with this disease live by themself. i would sure like to hear from someone in my situation that live alone, how they get to the bathroom and things like that. i cant even move my wheelchair
 

Allnycole

New member
Joined
Oct 13, 2008
Messages
9
Country
US
State
IN
City
Elkhart
Hello Cukita,

I don't know that I will be of any help to you but I noticed that no one has yet responded and therefore I want to make sure you get a response from me. Have you contacted the MDA? The MDA was incredible when my father had ALS. I don't know that they will have someone to help stay with you, but they may have resources to direct you to. I know when my father had ALS he had no medical insurance and the MDA picked up the expense and paid his needs. So, if you haven't checked there try contacting them for resources and referrals.

Sorry, I can't be of much more help to you. My mother was my father's main caregiver and I tried to help by going over there every night after work.

I hope that you find some support and resources to meet your needs.
 
Status
Not open for further replies.
Top