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dadspooh

Member
Joined
May 28, 2008
Messages
14
Reason
Loved one DX
Country
US
State
PA
City
Brockway
It's hard to believe that it's been a year since I've checked in to the forum. I'm sorry to say that I generally only use the forum when I can't handle my stress alone. My father was diagnosed with ALS 3 years ago. Since that time many changes have taken place. As each one occurs, the family and my father go through an angry period. Then we seem to adjust to the change. I talk to my father several times a week, but due to living a distance away, we see each other once a month. Each month I notice subtle changes in both he and my mother. My father has been on the vent for over a year and has been in a power chair within a year of his diagnosis. He has always enjoyed computers as that was his vocation. It is heartbreaking for me to see him losing his ability to type on the computer and to even have difficulty maneuvering the mouse. I helped dress him and put him to bed to relieve some of my mother's stress. It really brings the reality of this horrible diagnosis to light. I put on my brave face for my 4 year old, but eventually I've got to let it go. I don't like to talk to friends because I feel it's not fair to make others sad. They know they can't change what's happening and they say they don't mind, but I just feel worse when I make them sad too. I don't talk to my mom because I prefer to be her support. My husband doesn't know how to comfort me because, again, he knows he can't fix this. Sometimes I just need to get it out. I hate that my father cannot take my daughter to the pool or the park like I know he would like to. I hate when I can't tell her that her pap-pap will take her places when she's older like she plans because I know that most of those things are already not possible. This disease stinks! It's hard to watch him get worse and see my mom's spirits get low when she feels she can't do enough.

Well, thanks for letting me vent and cry. I know that my dad has good days and loves visits from us despite his condition, but sometimes you just need to let it out.
Dadspooh
 
You are welcome , come back anytime.

Caregivers, in my opinion have it worse than the PALS.

Can you not get some Home care workers to come in to relieve your mum ? Maybe the ALS center near you might have some contacts for this.

Glen
 
Welcome back. Were is Brockway PA. my nephew's name is Brock, he would think that was neat, a town called Brockway..
 
Hi dadspooh. Don't feel bad about your feelings. We're here to listen and offer support in whatever way we can. Don't be a stranger.

AL.
 
She has care many days but only some nights. My nephew helps out at night too sometimes. I guess its like you said, "caregivers have it harder" She just hates watching him deteriorate knowing that they were supposed to grow old together. I guess this is just not how we see our lives when we get older.
 
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