Frustrated & tired

[ruthiep]

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]

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]

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]

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]

Sending you hugs! Everything certainly changes. Everything!

 

[Miss]

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]

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]

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]

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]

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]

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]

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]

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]

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...........