A Daughter's Desperation

[ceegee]

My mom was diagnosed September 2008 and has rapidly declined. She can no longer move anything except her head, a little. She can no longer speak and is can barely chew. She is 64 and doesn't use the computer so we use letter boards to communicate. I've visited a few caregiver support groups but every time I leave I feel worse because i never meet anyone who is in the same situation as my mom. It feels she has the worst ALS ever. I have a caregiver there everday until I get home from work and than my brother, aunt and I take care of her at night and weekends. i also have an 18 month old son and husband.

My mom moans all day long and wants to be moved almost every 15 minutes or so whether its her bottom, her hands, her arms, her back, etc. she sits either in bed or in a recliner. She refuses to sit in her wheelchair. She just constantly is moaning that the is uncomfortable. Does anyone else experience this? Any advice would be great!

Ceegee

 

[GlenBrittle]

Have an OT (occupational therapist) fit her properly to her chair.

When properly done , it should be effortless to spend many hours in it.

From experience, I thought that my chair was pretty comfortable, but after 5 hours I was getting sore muscles. When I had my last round of visits to the Rehab Center, I saw the OT for a different issue and she out of the blue said , that chair is not setup properly for you. Since they made the adjustments there, I am able to spend most of the day in it.

Also make sure she has a proper cushion that feels good and adjusted for her.

I cant address the other issues, but this would be a good start to get her spirits back up.

My two cents.
Glen

 

[joelc]

There is also Palliative care that can come in and administer medication to take care of the pain that is causing all the moaning.
I just found out about all they can do today as we had a visit from them and got several prescriptions to help with that issue.

 

[rowland's wife]

my husband was also diagnosed in sept.2008 with bulbar . He has had a very rapid decline also,all he can do is move his neck alittle and his left arm and leg a little. His speech is almost gone to I can understand him sometimes. He also has swallowing issues he hasn't ate in the last 4 days, he has drank some liquids though. He also has alot of pain in the bed and when he gets up. A couple of weeks ago he started taking liquid morphine it seems to help the pain alot. Does your mom have any breathing issues? My husband has some shortness of breath lately.
Als is a very sad disease, it is so hard to see some one you love get so down so fast, everytime I turned around it seems like he was losing the ability to do something else first his speech slurred, then his right hand got weak, then he started falling then his right leg got weak,then his left leg then his left hand all the while his speech and swallowing have gotten worse since thanksgiving he has no longer been able to even get a drink by himself, or smoke. i don't know why it moves so fast on some people, your moms seems to be moving as fast as my husbands he is 49, we have a 8 year old boy. Hang in there I know how hard this is I cry alot,I pray he doesn't have to suffer much longer that god will be ready for him soon and he will fianally be free of all the pain,that is a hard thing to say, but I love him and this is hard for him being unable to move or do anything for himself

 

[KeeKer]

My brother used to moan alot, but he didn't realize he was doing it. Said it didn't hurt. Maybe hospice could help with the pain issues.
Colleen

 

[JOSIEM02]

My mother in law moans alot and I don't even think she realizes it. I asked her several times if she was OK and she wanted to know why. I told her about the moaning and she just looked at me like I was nuts.

 

[AlleyTurner]

I am bed bound due to breathing so weak and my body I can not move for myself. being bed bound made it impossible for me to go to my good Neuro for help anymore. the past several years i have a Dr. come to our home but he has been no help . So I thought I best sign up for pallaitive care to help with pain management .. When the Nurse came she said my Dr. stopped seeing patients a wk ago . It was meant to be she gave us a name of new Dr. he was at our home 3 hours Sunday ! He started the business 4 years ago and building has other Dr's work with him. He will be taking care of all my pain needs and more ! And he has patients that live at home on vents and extremely familiar with them. They also answer their phones 24/7 and work to keep their patients out of the hospital ! A weight was lifted off mine and my husbands shoulders when this new Dr. entered our home Sunday ! I was glad Hubby could call Hospice and let them know we would not be needing Palliative care ( they were NOT going to do much only send Nurse out once a month and physician care Dr once a month but at time was best i could get ).
Search around, and talk to everyone and see if you can find a good Dr. that makes home calls that can come help give your Mom good care. She should not be in pain. I myself can not even sit up little bit in bed it's flat on side only with Bi-pap 24/7. Now with new Doctor I feel a new lease on life ! Don't give up fight and get mom th best you can !

 

[cukita99]

ceegee, i a 55 n wheelchair bound. i use one finger to type. i would go crazy without my computer. i too moan a lot but its not from pain. i make all sort of noises that are weird and drive my son crazy. lots of times i dont bother my caretaker and i try to deal with my pain on my own, when and if i have any. i dont bother anyone unless necessary. i try to be strong.

 

[ceegee]

Thank you for all your postive feedback.

 

[ceegee]

HI Rowland's wife. thanks for resonding. do you stay home and take care of your husband? i have someone with my mom everyday during the week but at night and weekends its me, my aunt and my brother. i feel like we need more help. i'm thinking of hiring a private aide. i know it will cost money but its worth it for our own sanity. i have an aid already that comes 2 hours a day to help the caregive which ALS pays for. just wondering how your doing it. hang in there. its comforting to know i'mnot the only one. thanks.