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Shel

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Joined
Jan 7, 2008
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2
Reason
Loved one DX
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US
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PA
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Mars
My mom has ALS, she is 60yrs old, has had it for 3 years now. In the beginning, she walked with a kane, then a walker, then wheelchair. When it got to the point she needed a wheelchair and had no movement in her legs, she had in-home care come to her house twice a day to get her meals etc. She lived alone. Someone went and put her to bed at night, and she had a life-line necklace incase something happened since she couldnt move from the waist down. I live an hour away, have 3 kids under 10 and work full time. I do see her once a week. A year ago she got worse, and I decided she shouldnt live alone, so my only choice was to put her in a assisted living home. She has been there a year, and is well adjusted. I hate it though, because she has no quality of life. In the past year she has lost movement in her arms...she can move her head, and left hand. She sits up when they put her in a chair, but that is only once a day. Hospice does come once a day to sponge bath her. The first 2 years, I could do more for her, I brought her to my house to stay for weekends here and there. I have bathed her, and I felt like I was doing something for her. Now, the past year, its like she is alive but not living. Every cent that was in her pension ( which isnt much) is being spent on the nursing home, and I worry what will happen when that money is gone. The decisions are all mine, and I feel like Im not making the right ones for her. She could live with this for years....I know some people still get out, they have wheelchair accessible vehicles, etc, but I dont have the means for that. So, Ive decided to talk to you all, who at least know what I am saying, and feeling. Its a hard thing to live with, for her the disease, for me the sorrow of watching her suffer.
 

kmgy

Active member
Joined
Dec 22, 2007
Messages
40
Reason
Loved one DX
Country
US
State
pa
City
somewhere in
Hi shel,

Is there anyway you could move her to an assisted living center closer to your home so you could see her more? When my father had als, i also had 3 kids under the age of 10 - it was not easy. I wish I could have done more, but I know I did all I could. Fortunately for me, he lived 3 miles away, and had my mother who also lived with him. My sister also lives close and helped alot. It may not be an option to move her to a facility closer to you, but it is just a thought. Also, there are many families whose children live at one end of the country, and their parents at the other. Once a week may not seem like alot to you; however, I am sure that there are others who would love to see their parent/brother/sister/friend with als that are even further away than you.

I am sure those grandkids also give her lots of joy.

take care,
kmgy
 

Shel

New member
Joined
Jan 7, 2008
Messages
2
Reason
Loved one DX
Country
US
State
PA
City
Mars
Hi Kmgy,

Thanks for your reply. I have often thought about moving her to a facility closer to me. In fact, the home she is in has already told me her care is getting to be more than they are staffed for, mainly since she is starting to not be able to feed herself. I would love if she was a few miles away, so I could see her daily. And, you are right my kids make her so happy! The reason she is in the place that she is.....that is where her home is, in fact her house is sitting empty ( well, of people, not "stuff"), because I havent had a chance to clean it out & sell it. She lived in the town all her life....has some friends there, and it was the easiest to get into. A big fear is the places near me arent affordable to us, and I do worry about what we will do when her money is gone. I put things off, because it is hard to think about it. But, yes it would make it easier if she was close. Thanks & take care.
 

sharonca

Distinguished member
Joined
Nov 27, 2007
Messages
423
Reason
PALS
Diagnosis
12/2007
Country
US
State
CA
City
Mentone
ideas

Hi - so sorry to hear of the problems with your mom. I lost my mom to Pick's disease this year and she was also unable to walk, use her arms or feed herself. And she lived close by in an assisted living facility. Wonderful place. My idea is to talk to the hospice organization that she uses now. Perhaps they have an idea of a facility near you that they service also. I have found them to be a wonderful source of information. I have found that the facilities are more attentive when they know a family member is close by. I spent so much time researching facilities for my mother, father-in-law, and other x-in-laws and now I may need it myself as a PALS. Life is like that I guess.

SharonCA
 

kmgy

Active member
Joined
Dec 22, 2007
Messages
40
Reason
Loved one DX
Country
US
State
pa
City
somewhere in
Another good source for information would be the als clinic your mother attends. they should be able to let you know what facilities are familiar with als patients.

good luck
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hello Shell- I am sorry for all your family is going through. I keep my Mom in a home near where I work. That way I can see her at lunchtime, or on the way home in the late afternoon. It means an extra 45 minute drive on the weekends but some weekends give myself a break, knowing I have gone every day after work.
 
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