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The Sass

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Greetings Caregivers,

I need advice from someone who is or has experienced caring for someone bedridden. My mother is in what we believe is final stages of ALS. She is on bipap 24-7. She is on a feeding tube and is unable to speak. She can however write. She cannot walk but has been able to stand from her adjusting and pivot to a wheelchair to go to the bathroom. She has been in her chair both day and night for a couple of months because she says she sleeps better there. Because she can not longer control her bowels I know we will have to put her into bed care since we will not be able to keep her "clean" and changed in a chair. At her current rate will probably be total bed with a couple of weeks because we can barely handle her. Are there any of you caring for someone on total bed care and if so how do you do it? She is on hospice and they bathe her daily and we have a cna who sits with her 10 hours a week but we just don't know what to expect. My dad is 81 but fairly strong and up until now I have been there only about 60% of the time. Help
sass
 

brooksea

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Dear sass,

I am so very sorry your mother has deteriorated so. I do not have an answer to your question, but only wanted to say you and your family are in my thoughts.

I'm sure others will be able to give you some advice.
 

Icanmanz

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Hi sass, I am so sorry to hear about your mom. I know the "heartbreak" you are experiencing right now watching your sweet mom detoriorate (sp?) so. I know, I watched my lovely son succumb to this monster disease in such a terrible way, that I just cannot get it out of my mind. We all say we have found peace and comfort. Yes it was easy for me to say it, but hey as the days go by and you know you will never, ever see that loved one again it tears you up inside out. I do not believe the paon will ever go away. It will always be there. My mind is at ease when I am busy, and once I don't have anything else to do my mind goes back to the terrible days that my son laid there succumbing to this damn disease. My baby had so much to live for, it's just not fair. My hear is breaking into a million pieces right now as I am typing this post. I just miss my baby. I had him for 38 years, and I wanted him for many, many more, but it did not happen. I know God is in control, but when something like this happen you feel so helpless. I will never forget what I told my son that day when he was diagnosed'ed. I said to him, "Son, you know I have always been there for you. I never turned my back on you. This is going to be one big battle I will not be able to win to give you a helping hand. I wish there was something I could do to make this go away, but it is in God's hands." I will forever be in pain.

Sass, I wish I could give you helpful hints, but I am out of words, and ideas. I was going to bring up Hospice, but I see it is already in the picture. You see when my son became bedridden he did not last that long. It was days, and he was gone. I had no idea that he was going to pass when he did. I remember when I was fixing to massage his feet that Saturday evening his feet from the shins down were ice cold, and right away I knew what was around the corner. I called my other son to come at once, and asked him to call all his friends and relatives. Before we knew it my house was packed, and remained packed until he passed the following evening. He was such a sweet son. I saw the tears in his eyes rolling down his cheeks as he was passing, and not able to talk. Well right now, I cannot see the keys, as my eyes are full of tears. God bless you all fine folks, and I love you all for allowing me to vent! Love you and God bless! Need a short break, and a cup of coffee!

Irma
 

brooksea

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Sass,

Have you asked the ALSA about a lift? They may have one in the loan closet or could give you some suggestions on what to do. I know there are some lifts that are "portable" or don't attach to the ceiling, but I don't know what they are called.

Hope you find a solution. Let us know.
 

CindyM

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I have found the hospice folks very good at offering advice and tips for what to expect. And the CNA should be showing you how to transition her from chair to bed for the times you are alone with Mum.

The lift is called a Hoyer, I think. The local MDA society may have one on loan. good luck and let us know how things work out for you. Cindy
 

trustinggod

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Hi Sass,

I am so sorry you are going through this.

I took care of my friend for a few years before she died last November from ALS.
She never lost total control of her bowels but she was unable to move any body part except her fingers, eyes, lips and tongue. Needless to say it was difficult getting her onto the toilet and off again. She could not support herself and was a complete dead weight transfer. Because she was so light (less than 100 lbs) I was able to get her onto the toilet whenever necessary. We did this because she was so young (47) and completely mentally aware. She was horrified at the thought of wearing and using a diaper.

However, since then I've learned that most PALS, at the stage of progression she was
at have a hospital bed, catheter and wear diapers. Changing a diaper on a person in a hospital bed is do-able. The nurse or CNA from hospice can probally show you how.
My friend didn't want a hospital bed (she wanted to continue to sleep next to her husband) so she bought an adjustable bed about six months before she passed.
It worked great for elevating her head to help her breath easier and sleep better.

I hope this information is helpful.

I'll be praying for you and your family.
Jeanne
 
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