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kellyh

Member
Joined
Jan 22, 2010
Messages
20
Reason
CALS
Diagnosis
03/2009
Country
US
State
Sc
City
Sumter
Anyone else out there basically confined to a hospital bed and very depressed? My mom has been confined to a hospital bed most of the time for about a month. It is the only place where she is comfortable. She gets in her chair every now and then but she is constantly having pain somewhere, whether it be a headache, constipation, etc. She is starting to get depressed from being in the bed so much and we try to get her out but she can't get comfortable for long. Any suggestions?
 
Kelly, I'm sorry I don't really have any brilliant suggestions but I can totally sympathize. My dad has also been confined to his hospital bed for about three weeks now. It so hard to see our parents suffer this way. Just continue to show your mom love... my dad just loves it when I give him a hand massage with cream. Maybe you could try it?

I offer my support...
Rosella
 
Thanks...Its nice to know there are others out there that are going through similar things as me...when was your dad diagnosed?
 
Is her "chair" fitted for her? They should be able to tailor the chair so that she doesn't have too much discomfort. Does she have a "high-profile" RoHo seat cushion? Earl has one and we add or remove air to make it more comfortable for him when him bum hurts.
 
Cris,
Her chair is fitted to her and she has a Roho cushion but it is hard her to stay in a seated position. Lately she has experienced a lot of pain and has not wanted to get out of bed.
 
Not everybody may agree, but I take Oxycodone. Life is good Oxycodone. It works as a antidpressant, and It helps my pain, and helps mask the als feeling in the muscles. When your this far into the desease. Who cares about being dependent. You can be weaned off it if need be. As far as constipation. Mirralax is the way to go. Nothing works better in my opinion. Take it every day.
 
Thanks for the tips, Phil.

Kelly my dad was diagnosed on August 18th, 2008 with bulbar onset. How about your mom?
 
kellyh..sorry to hear that...It's gotta be rough.

Do you have anything to distract her? Could she use a voice activated comp(laptop)?

Earl got a microphone for comp that will do just about everything on the comp for him. Wish I had some better ideas to help get her mind off of things....:(
 
Is it feasible to change the room the hospital bed is in? Those suckers are really not movable such that you could have it in the bedroom at night and the living room during the day in most homes but how about changing things up so that the hospital bed is moved into the living room or whatever room is active during the day for a few days/weeks to see if that helps. Sometimes just a change of scenery can help.
 
Mine is moveable. Just let it down until casters are in control.

Mind you , its just for sleeping right now.

Glen
 
Thanks for the tips, Phil.

Kelly my dad was diagnosed on August 18th, 2008 with bulbar onset. How about your mom?


She was diagnosed March 2009 but symptoms started June 2008. Can he still eat, talk, move on his own, etc? My mom can't do any of that she can still (luckily) use her right hand to communicate with us which she does via dry erase board. She has a dynavox but finds writing much easier and quicker. How old is your dad? Things are not good for her right now...she has been having excrutiating headaches and can't get any relief. It is nice to know there are other people out there going through simlar things as me. I am an only child and my parents are divorced so I my mom is basically dependent on me. We have a lot of friends and family that help out but it is physically and emotionally overwhelming. I am only 23 years old and just got married in April!
 
Is it feasible to change the room the hospital bed is in? Those suckers are really not movable such that you could have it in the bedroom at night and the living room during the day in most homes but how about changing things up so that the hospital bed is moved into the living room or whatever room is active during the day for a few days/weeks to see if that helps. Sometimes just a change of scenery can help.

We have the hospital bed in her living room...Her house is bilevel so it is not feasible to move it. Thanks for the tip though!
 
kellyh....maybe an alternating air mattress on a day bed of couch in living room? I agree, change on scenery would do wonders
 
She was diagnosed March 2009 but symptoms started June 2008. Can he still eat, talk, move on his own, etc? My mom can't do any of that she can still (luckily) use her right hand to communicate with us which she does via dry erase board. She has a dynavox but finds writing much easier and quicker. How old is your dad? Things are not good for her right now...she has been having excrutiating headaches and can't get any relief. It is nice to know there are other people out there going through simlar things as me. I am an only child and my parents are divorced so I my mom is basically dependent on me. We have a lot of friends and family that help out but it is physically and emotionally overwhelming. I am only 23 years old and just got married in April!

Kelly I am so sorry to hear of your mom's progression. Believe me I know how emotionally overwhelming this is to deal with. I have had a pretty tough time and am lucky that my mom is my dad's primary caregiver. She has been doing an amazing job but she is also overwhelmed. I do whatever I can. I run errands for her, bring her her favourite foods or make dinner. I visit several times a week and sleep over there on the weekends. I also massage my dad's hands which hurt him a lot. I would do more but I work full time. I can only imagine how much pressure you feel being your mom's primary caregiver. My hat's off to you! You are an amazingly dedicated daughter and your mom is so lucky to have you.

My dad is 69. He was 68 when he was diagnosed and in retrospect he started showing symptoms in 2007 when he complained that he felt like something was always stuck in his throat and he had trouble swallowing. Then early in 2008 he started slurring his words. Today he has very little mobility left. He is bed-ridden and has no mobility in his lower body, his neck is very weak and he can still move his hands but that is getting increasingly difficult. He doesn't complain of headaches but he has terrible pain in a variety of other places so now he is on Dilaudid which works well but makes him sleepy. He also takes Ativan for anxiety. He is on his Bipap 24/7 and his breathing is shallow so he is prone to panic attacks, which are terrifying.

Did I mention I HATE ALS? :x

This is a horrific disease and I have to have hope that one day a cure will be found. It is just too awful for families to deal with. Thank goodness for the internet. Can you imagine what it must have been like, before the internet, to be the only family in your town dealing with ALS and having no connection to others in the same boat? I am so grateful we have this forum and we can support each other.

Take very good care of yourself, Kelly and congratulations on your wedding!
 
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