Recently DX

[DeeDee]

Hi to everyone. I am a newbie and am learning to navigate around this site.
My father was recently DX in October 2006 after 10 months of endless doctor visits and traveling around the south from specialist to specialist. Like everyone here, we were shocked that simple neck pain turned out to be this ALS.
I guess I'm having issues with 2 things and would love some input on 1 or both. First, I know the progression is different in each patient but he seems to be going down hill faster than what we have read and expected. In January he was a strong man, driving himself to dr. visits and now is fulltime in a wheel chair with hardly any strength. He has dropped 50lbs and is now at 128lbs. I've tried to bribe him to eat by telling him a trip to his favorite casino is riding on an 8lb increase! He has no appetite which of course lends to the weakness.
The 2nd problem is one I've read here on this site about and thats my mothers response. She seems to be in constant denial and seems mad that he letting this "beat him". Therefore, she is mad at him just about all the time. I've talked to my dad about it and he is scared of her reactions to his increasing needs. Any suggestion of her getting help for some relief is not an option to her as like I said, she thinks he's going to get better.
Anyway, if nothing else, thanks for letting me vent.
God Bless To All

 

[liz]

Welcome DeeDee -

Sorry to hear of your struggles with your dad. Are you linked with an ALS Center? Maybe they could help explain things to your mom. Do you think your dad might be depressed? This could also be addressed at an ALS Center or whatever neurologist he sees. Good luck.

Liz

 

[Al]

Hi DeeDee. Sorry about your dad. When that much weight loss is encountered a feeding tube is about the only option available. If he won't eat then it will probably be a hard sell to get him to take a feeding tube. Denial is a natural emotion and given the rapid decline in your father it will be hard for your mom to get over it without help of some sort. AL.

 

[hboyajian]

My father's condition has also been declining rapidly, especially in the last month. My mother is his caregiver, and she has at times felt overwhelmed with everything she has to do, including arranging and getting to all the various appointments. She does not drive, so getting to places and getting what she needs is difficult. Two weeks ago my dad got approved for in-home care, so they are having help everyday for a few hours. Their caregiver is able to run errands, help my dad with hygiene and dressing, etc. Knowing that she doesn't have to do it all by herself has helped my mom cope and not feel hopeless. Your mother might be feeling stress, fear, helpless in the face of the illness (all very difficult emotions), and is covering this with denial as the only way she can cope right now. If it is possible to get her some help with everyday care responsibilites it could help the situation overall. She may also need some moments to do something for herself. She may need counseling to understand her reactions and emotions. An ALS support group for caregivers could help her. This illness can deeply affect the whole family, not just the person with the diagnosed, and everyone needs to have their needs met as much as possible. My parents are getting support in various ways, including family, professional help, and a "care committe" in their religious group. If there is a clso friend your mother can talk to, this may also help.

 

[cartman]

DeeDee

the speed of your father's als is very much like mine, a few months ago i was driving and now am confined to a motor-scooter for my travel with-in the house and need help standing, als is relentless in some of us, thank god my wife is a rn who understands this disease and the different way it affects each person. tell your mother the more energy he uses trying to beat als the weaker he will get. she really needs to find a caregiver who can communicate the progression of als,who can relate this is a terminal disease and she has very little time left to spend with him. it's hard to believe the time left can be quality time, it can be with a loving caregiver. my prayers are with your mother that she can find peace and come to grips with her situation.

cartman

 

[DeeDee]

Thanks you so much for your advice. I'm so sorry to hear that you are also experiencing a rapid progression. I will start working toward getting a caregiver for my father. I don't want my mother to feel like she isn't capable of his care. His neurologists suggested we contact Hospice since there are no local support groups here in our area. So I will probably go that route first.
Again Thank You So Much!

 

[DeeDee]

So sorry to hear about your dad. I can't imagine how hard it must be for your mother since she doesn't drive. We do not have a local support group here but will check into some other options. I did show them this site but I don't know if they have logged on.
Thank you and God Bless