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ruthiep

Distinguished member
Joined
Feb 28, 2011
Messages
173
Reason
Loved one DX
Diagnosis
01/2011
Country
US
State
AL
City
Enterprise
I'm praying that this horrible disease will slow down and give Scott a break.....he's tired and I'm not a happy camper. Sitting here crying because our bed is "messy"....heavy comforter and "tucked in top sheet" have been nixed because they bother his
feet/legs. The swollen/ice cold feet have necessitated extra pillows and a different blanket.....everything is changing so quickly! Incredibly silly I realize but the tears still flow~ Hate that I felt the need to rant!
 

notme

Extremely helpful member
Joined
Apr 3, 2011
Messages
2,581
Reason
PALS
Diagnosis
08/2011
Country
US
State
Fl
City
Orlando
Hey--you can make a cheap easy fix for the foot issue. It's kind of like a box at the end of the bed for his feet--so the sheets don't touch his feet-let alone the weight of a blanket.

Don't know if that would work or not--but this type of thing was used frequently in nursing facilities. I teach my students about them for their clients that are bed-bound or spend a lot of time in bed.

The swelling might be helped by elevating his legs on pillows at night, too.

They make a very soft cut-out pillow/foam thing that works well for arms OR legs, too.
 

notgivnup

Senior member
Joined
Nov 8, 2010
Messages
815
Reason
PALS
Diagnosis
11/2010
Country
OS
State
Darkside of Moon
City
country
ruthiep, So sorry you are so sad. Rant if you must, get it out it is ok. We all feel for you and are praying for you and your husband. You are not alone , know we are here for you. God Bless you both may He grant you peace and comfort to sustain you. Sending ((((HUGS))))
 

lms9258

Distinguished member
Joined
Nov 4, 2009
Messages
110
Reason
Lost a loved one
Diagnosis
07/2009
Country
US
State
Wisconsin
City
Milwaukee
Who else would understand why you're crying over a "messy bed"? Maybe it has something to do with everything "changing so quickly..." and watching and caring for someone you love with this awful disease, being so hard. You are not silly at all. You should not feel bad about the need to rant--this is the place you are safe to do so. I understand, as many others on here do.

Laura
 

brooksea

Legendary member
Joined
Sep 27, 2006
Messages
5,171
Reason
Other
Country
HM
Sending you hugs! Everything certainly changes. Everything!
 

Miss

Very helpful member
Joined
Apr 11, 2010
Messages
1,757
Reason
Lost a loved one
Diagnosis
04/2010
Country
US
State
In the Land of Cotton
City
Way Down South
I think most of us (CALS) have experienced what you are feeling. I know that I still have that feeling after a year of nothing but changes! I just wish it would slow down and give us time to catch or breath.
 

ruthiep

Distinguished member
Joined
Feb 28, 2011
Messages
173
Reason
Loved one DX
Diagnosis
01/2011
Country
US
State
AL
City
Enterprise
Thank you all so much for your sweet replies.....it makes me feel a little less crazy for getting upset over the seemingly "little" things!
 

kevinbrown10

New member
Joined
Apr 21, 2011
Messages
4
Reason
Loved one DX
Country
ind
State
Rajasthan
City
Jairam Nagar
Hi Ruthiep, I would also tell you not to feel alone and not to create a give up feeling inside you.I agree Notme as he suggested a good way to keep away swelling problems from foot.
 

jwife

Distinguished member
Joined
Jul 10, 2010
Messages
160
Diagnosis
05/2009
Country
US
State
Alabama
City
Lincoln
The problem is that there are no little things with ALS. This disease makes everything more significant because it is just the beginning of more things to come. I certainly understand the need to cry over a messy bed because I have gone from where you are now to sleeping in another room while my husband sleeps on a hospital bed in the master bedroom. And I know that the next move will be a twin bed in the room with him so that I can help with the turning during the night. So don't feel bad about tears over what would be simple things to other people. CALS share a common experience that other people can only imagine. Hoping tomorrow brings some good times and some smiles to share.
Janis
By the way, Lincoln is close to Talladega (near the speedway) It just off interstate 20 about half way between Birmingham & Atlanta
 

jeffro

Member
Joined
Mar 18, 2011
Messages
19
Reason
PALS
Diagnosis
08/2005
Country
US
State
AL.
City
Dothan
Hey Ruth
Been there with the feet swolen and cold,best thing is what you are doing keep them elevated,also try fleece blankets,they are warmer and lighter in weight.I use a lite one in summer and heaver one in winter.Keep on ranting
Jeffro
 

Bhappy

Distinguished member
Joined
Apr 6, 2011
Messages
169
Reason
PALS
Diagnosis
02/2011
Country
US
State
Illinois
City
Anywhere
Ruthiep,
You already have lots of good advice so I'll keep it short! Find smiles and laughs where you can and rant when you have to!
Take care,
Mary
 

ScarlettK

Active member
Joined
May 27, 2011
Messages
85
Reason
Loved one DX
Diagnosis
05/2011
Country
US
State
TN
City
Winchester
I understand and can sympathize with your frustrations. I am trying to live for each day and not think about tomorrow. But the changes are coming one right after the other for my sister. She is coming close to the point when she will not be able to walk any longer. The cover on her bed hurts her arms. She tosses and turns at night barely being able to move herself in her bed. I hate what "the monster" is doing to her. I HATE what it is doing to all of those here on this site. Please God allow someone to find the cause of this MONSTER destroying those we cherish.
 

schavez500

Active member
Joined
Jan 15, 2011
Messages
47
Reason
PALS
Diagnosis
07/2010
Country
Uni
State
TX
City
Rio Grande City
do not tuck in the sheets..I find it makes me feel like I am suffocating. Use very light cotton sheets.. Twin size. I use 2 at night. Also the hospital gave me these pink foam support shoes, that help with foot drop while laying face up. Smile :razz: ... It will help him...
 

hollyt

Member
Joined
Mar 28, 2011
Messages
13
Reason
Loved one DX
Country
US
State
CA
City
El Dorado Hills
Anyone caring for someone with ALS can relate. Your not alone in your feelings...My husband was diagnosed two years ago and things have changed rapidly. He went from a 39 year old extremely active, coordinated person to struggling to get in and out of bed among many things. It changes all of our lives so very rapidly (some little changes, some very big). Don't feel guilty, your feelings are perfectly normal. I have had them too. You hate to see someone you love go through this and you hate that your life as you knew it will never be the same. This is my first time coming to the forum and commenting, but I can sooooooooo relate and for a long time...was very angry with myself thingking I must be a bad person for getting frustrated. That was until I connected with a few others who were further along in the journey than me. Stay Strong...........
 
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