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RICHPD

Member
Joined
Mar 7, 2008
Messages
20
Reason
Loved one DX
Diagnosis
3/2008
Country
US
State
ma
City
weymouth
My dad has been living with us for the past several months getting around on this wheel chair pretty much on his own. We/he wants to stay here as long as possible but his body is getting weaker. He is starting to complain about having difficulty getting off the comode back on his chair. My wife and I both work full time (different hours) so he can be alone for up to three hours at a time.

I was curious how others are able to keep their family members at home as their progression worsens. We have started home elderly care but as of now it's just for sponge bathing. Without quitting a job I can't be home 24/7. Nursing home is last resort but if he can't use the bathroom while alone what are the options, are there any? what do you do? Getting really concerned, thanks.
 

brooksea

Legendary member
Joined
Sep 27, 2006
Messages
5,171
Reason
Other
Country
HM
Hi Rich!

My PALS isn't at that stage yet. Sorry your Dad is having problems transferring.

Have you contacted your MA hospice or palliative care organization for the state? Also, others have suggested "Share the Care." This is where you organize friends and neighbors to do certain things on a schedule for the patient.

Maybe the social worker at the ALS Clinic will have ideas for you, as I'm sure this comes up constantly.

If your Dad is on Medicare, it is my understanding that they will not pay for "caregiving" unless there is a medical necessity that requires nursing also. (Don't quote me on that, I haven't read all the rules and regs in a while.)

You are a wonderful son to take on the care of your father. And your wife must be a real jewel.
 

terri

Distinguished member
Joined
Jul 7, 2005
Messages
126
rich

There are several things you might try. Urinals work well for #1 and a drop arm, if he needs to transfer, bedside toilet can be helpful for #2. The very nature of the disease makes care a challege. Hopefully, you can start looking now for full time care when you aren't there.

Take care and I wish you the best.

terri

cals to LB 2005-2007
 

coolr

New member
Joined
May 20, 2007
Messages
7
Country
US
State
VA
City
Charlottesville
keeping PAL at home

I am moving from my home to my daughter and son-in-law's tomorrow. They can be with me more and will have to drive back and forth less.

Hospice has been and will be a great help for me. The nurse visits once a week (or every two weeks) and phones every few days. A Hospice aide has taken care of meals, or helping with shower, as well as hanging up stray clothes. This has been five days a week for an hour to an hour and a half.

I am still able to move from one seat to another, but there are numerous things advertised to assist in moving from the toilet to chair. I know nothing much about this, but research on the web may help, as well as the suggestions from Sharon and others.

Good luck to us. coolr
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi coolr. Have you registered with MDA or ALSA? They can give you advice on all that stuff and have loaners for free.
AL.
 
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