Status
Not open for further replies.

LauraA

Member
Joined
Nov 22, 2010
Messages
15
Reason
CALS
Diagnosis
10/2010
Country
US
State
Nevada
City
Henderson
My 81 year old dad is living with me and was diagnosed with ALS in October of 2010. He has been suffering with symptoms for over a year starting with limb onset in his legs and would not go to a doctor until I took him bc he could no longer use his left side and could barely walk. Now he has speech problems and is having a hard time swallowing. He has also started wheezing when he breathes.

He is 81 years old and is a very stubborn and proud man. This past weekend he just fell from a seated position and I think his abdominal muscles are going. He keeps saying that when he walks w/a walker he feels like he is falling backwards-- but REFUSES to get into a wheelchair. He has also stated he wants no aritificial means of providing food or breathing aparatus to prolong his life.

How do I help him with his denial? How do I transition him to the inevitable fact he will be bedbound/wheelchair bound soon?

What is the progression once he is in a wheelchair/bedbound?

This is such a horrible disease!
 
Laura, sorry you are having to deal with this. I picked up a wheelchair from our local ALS loan closet for my Mom, she was 78. She didn't think she needed it either but we were traveling and had a wedding to attend. Since we didn't take her walker she had no choice but to use the wheelchair. Thankfully she accepted it. In the beginning she used her walker in the house, any ventures outside were in the wheelchair. A few months later she said she couldn't use the walker anymore and all transport was done via the wheelchair. Mom elected no PEG, Trach or vent. She did have a Bipap that she used a couple hours during the day, wouldn't use it at night. Her swallowing went also and I was pureeing everything as well as adding benecalorie (found on line, 330 calories in small packet). Mom was never bedbound, got up out of bed every morning and we moved her to her lift chair. When she could no longer stand to move from wheelchair to lift chair to shower etc, I used a transfer board. Your Dad may not be in denial, instead ready for the inevitable. Mom was and had planned her funeral with me writing her wishes down. ALS sucks big time and there is no two people who progress the same. Has hospice been called in? I wish we had requested them sooner as there were issues with the referral and we never had the opportunity to utilizes their services.
Hugs and prayers your way!

Rosie
 
Laura,
I am so sorry. I'm sure you will get some good suggestions, although I also think Rosie may well be correct about your dad being "ready to go". I would tell him that dying from the disease at home is his choice to make, but breaking bones such as a hip because of a fall would be unnecessarily miserable, and he should think about that. I would also call the ALS association in your area and ask for a loan closet power chair for him, which of course you cannot make him use, but you never know.

I also agree with Rosie's suggestion about asking your Dad's doctor for a referral for Hospice soon. My experience as the caregiver was that the first week with Hospice means a lot of visits, but then you'd have them in place and ready to help your father.

Progression is impossible to predict, Laura...

Praying for you,
Ann
 
Laura-
My dad is 83, and although he does not have ALS, he does have mobility problems due to spinal stenosis. He too is a proud & stubborn man!

I agree with Ann & Rose; he may not be in denial, just wanting to do things his way.
While safety is certainly an issue to consider- and you could have at least a small transport w/c there & available for him if HE chooses to use it- there is little more you can do than to just be there to pick him up when he falls. (It took my dad a number of bad falls before he even used his walker. )

Don't make this a battle- let him transition himself. Saying he wants no artificial means of staying alive says he is not in denial; maybe just afraid of losing control over his life.
When I focused more on asking my dad what he wanted, how he wanted to do even simple little things, he relaxed some & accepted some of my suggestions.

Focus on being his daughter- give him the dignity & respect, and lots of love befitting that relationship. That is how you can help him!
 
Status
Not open for further replies.
Back
Top