mother is progressing fast

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Jackie,

I'm sorry I can offer nothing as to what is going on with your dear Horace. I just wanted you to know that I read your post and hope the doc will come soon.

My thoughts are with y'all.
 
jackiemax,

Trouble regulating body temperature is a sign of the body beginning to slow or shut down. Sudden swelling is common when the body gets too hot. Restlessness and/or an inability to get comfortable no matter how many times one is repositioned is also another sign. The eating does slow down and so does liquid intake until they take in nothing. Do not force them to eat or drink as the body really does know what it is trying to do. Keep mouth moist and lips moist too (painful if left to dry) It's different for everyone and it can be like this for quite some time. It would be good for the doctor to come around and see both of you. You are very right... ALS touches everyone and as a caregiver it can be very difficult. You are so incredible with Horace. Whatever happens, I am thinking of you and your Horace during this time.

Paula
 
Yes it does sound familiar but with my husband it went on for awhile that way being so hot he couldn't even wear the lightest shirt. His last day he was cold all over and I spent most of the day heating blankets for him to try and warm him up.
And I agree with you it is the whole family that has ALS we were all fighting with it myself and our daughters, we were part of it all with him.

Hang in there Jackiemax it's tuff, find someone to give you a big hug you need one to as well as your PAL.

Cheryl
 
Jackie- my thoughts are with you and Horace today. Hugs, Cindy
 
Jackie,

Don't know what to say to make it all better - just wish I could. Your world must be spinning right now. Just know that people here care.

Debbie
 
Another Worried Daughter

Hi Girls, I know what you are all going through. My mom said she doesnt feel hungry anymore and never really wants to eat anymore, i thought it was because of fear of choking which she does a lot but she said its not. At our last visit with the neurologist she was very worried about my mam and noticed she lost a lot of weight and she looked very drained, she is arranging for her to go back into hospital, she said she wants to put a camera down to see her stomach as this is not normal with mnd, but looking on this forum it seems to be? Although I think she just said it as to not scare my mam, she knows she hates the hospital, and the camera procedure takes a couple of hours but she said she would be in for a week, so Im thinking they want to check everything!

Im so worried they will want to fit a peg, as i think she will refuse it. My aunt had a stroke a few years ago and since then has needed to be tube fed, my mam told me last night that that is her worst nightmare. I dont know whats going to happen next, her speech is also gone very slurred. I know she is losing the will to live, but really dont think she would just stop eating for nothing, she loves her food!

Will let you know what happens as hospital, dont know what its like there but the bed situation here is bad, which means over crowded hospitals and never a bed free!

My thoughts are with you all
 
God, the choices we have to make! Life is so unfair sometimes. We are perhaps looking at the same scenario soon with my dad. He's saying as of now that he doesn't know if he'd take a feeding tube - "maybe just for awhile". I don't know if my brother and I could agree (we both have power of attorney). You never think these issues are going to affect your family...at least I never did.

I hope all goes well for you - keep us posted -

Debbie
 
Hi, mndireland ... I am so sorry for what your mam is going through. It is horrible for her and for the people who love her.

About eating ... you said but really dont think she would just stop eating for nothing, she loves her food!. My experience as a PALS is that you DO lose all interest in food. I have always loved food, too, and when my symptoms began, I just could not force myself to eat.

If you can find anything she can get down ... milkshakes, puddings, etc ... that would help. I was in the hospital in December, and refused all food. Finally my family started bringing me in lemon yogurt and cheesecake, and I could eat that, and I lived on that for a month.

See if there's anything at all she might tolerate, no matter how crazy. Getting some nutrition will give her strength and improve her "will to live." But it's hard for her, I know... your appetite just shuts down with this disease.

Sending thoughts and prayers your way,
BethU
 
My Dad also had said he would never get a PEG tube and he loved his food as well. After getting to a point of choking on everything, even shakes, and losing a great deal of weight and experiencing the weakness that it caused, he did decide to get a PEG. It was a hard adjustment for him but he DID adjust. Especially because at first I would cook and blend food and put regular things into his belly. That made him happy! It also meant that he could have his nightly cocktails and that was his biggest selling point. We learned that if he coughed or belched after a feeding he could taste what we put into the peg so I continued to make sure his coffee was made the way he liked it and that all things tasted good. By the time we switched to formula only, he was used to the peg. He has had it for nearly 2 years now.

We had many times where Dad seemed to lose his will to live during this battle and it was hard because as his power of attorney, I had to separate his feelings from mine and support his wishes. He chose me for that role for a reason, he knew I would put his feelings first at all times. No, it's not easy for us to be the ones to make these decisions and it is heartbreaking sometimes. Before any choices are made on your PALS behalf, think long & hard and make sure that you remember what they have said or expressed in regards to how they want to live their lives and how they want their lives to end. If you stick with what they want, you will not feel guilty for making the decisions for them... at least that's my experience. It's hard but it's right.

We stopped my Dad's feedings this week. I have been struggling with the decision for a few weeks now but Dad's body decided for me that it was time. He has gotten to the point of being violently ill each time he is given ANY formula. His body is skin & bones now, literally, but he just can no longer digest the feedings and it reduces his quality of life to feed him now. I was afraid to decide for him when he should begin to let go and fortunately, he made the decision himself. If you look closely at your loved one, you'll see their cues, their desires, their wants and needs will show and it will guide you. It still isn't easy to be the one vocalizing it "stop the feedings now" and that then has to communicate the plan to family and friends... but knowing it is right goes a long way towards doing this with peace of mind and confidence.

If your PALS wants to let go and avoid getting to a point where my father is, I know it will be hard to accept because you love them but if you can, find a way to accept it and support their decision. While you may lose time with them, you won't neccessarily lose quality with them and if they are prevented from being completely helpless in a hospital bed, unable to communicate, move, laugh or be comfortable, it may be a blessing for all. We are helpless in the face of this illness but can control how we face it, to an extent...

Sandy
 
Sandy,

There is only so much we can do for each other. It is what it is and with this disease, it's often a guessing game. It's all about the dignity of our loved one. Their courage and strength help us to fight for the choices they make for their disease. It totally sucks... and it is just so damn unfair. Later on, a long time from now... you will remember this choice with admiration and a whole bunch of love for your father.

Take care and I'm thinking of you and your father at this difficult yet loving time.

Paula
 
I Had Not Been To The Forum For A Few Days, And When I Read These
Wonderful Posts From All Of You, It Was Sooooo Heartwarming
And Encouraging. Horace Does Not Have Much Of An Appetite At
All Now, And Also Says Nothing Sounds Good. But I Feed Him Some
Cereal Each Morning, Put Ensure In His Peg At Lunch Time For The
Nutrition, And Feed Him Supper By Mouth,but More And More, Nothing
Sounds Good To Him.

Also, He Is Saying He Can't Get Comfortable At All, He Is Restless A Lot,
And Tries And Talks With That Bipap Mask On, And It Is Muffled, So I
Have To Go Lean Over Him To Hear What He Is Saying, And That Is Frustrating
To Us Both.

Some Days He Says He Prays This Is The Day The Lord Will Come For Him,
And Other Days, He Does Not Complain Much. He Has Lost A Lot Of Weigh[[
And Looks Soooo Skinny Now, And He Had Been A Specimem Of Good Health
And Vitality Before This Happened.

Thank You All For Your Posts And Encouragement. I Know You All Are
Going Thru The Same Things Emotionally And Physically That I Am. So,
God Bless You All. Jackiemax
 
Jackie- thank you for the update. I hope Horace is as comfortable as possible.
 
I hope you're getting some time in for rest for you too Jackie.

AL.
 
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