GRM2008
Active member
- Joined
- Jun 29, 2008
- Messages
- 32
- Reason
- Lost a loved one
- Country
- US
- State
- NY
- City
- Massapequa
I joined this site when Mom was first diagnosed in June of 08...she is 72......i haven't posted since that year......this disease has just steamrolled itself into our lives....i feel the need to connect with others experiencing it too, and maybe even help someone else? i am so very stressed.....i am the oldest of 3 daughters, we are very close....i just turned 50......we all work full time, and have young children, and the closest of us lives 45 minutes from mom...i am 2 hours away....i am divorced, the other husbands work weekends......we are blessed in that Mom and her partner (not married, but let's call him StepDad) have some financial resources (he has more) to hire a caregiver during the week...but we go on weekends to save them money and because Mom needs us there...StepDad is disabled, so he cannot care for her, nor she for him (although she had been HIS primary caregiver until ALS struck)......they never married, because StepDad's adult children would never have allowed it.....you know, money issues, etc.....Mom never pushed for marriage, or any of his money, she just wanted companionship and love...there has always been resentment on the side of StepDad's kids toward us, over the fact that their Father and my Mother purchased a home together.....and yet, these adult children have good lives, earn nice livings, no one is struggling....their Dad owns a beautiful vacation home that they go to every summer, all summer, with their kids and spouses....and StepDad buries his head in the sand when they are cold to my Mom and us, and Mom doesn't demand the respect she deserves......so when ALS hit, what began as going there on weekends, every weekend, for moral support and initially with shopping, cleaning, for them as Mom's limbs weakened, has become full blown caregiving with 2 of us needed there every weekend to help move her, bathe her, feed her, do the laundry, clean, etc.,........we are learning to use the hoyer, and mom is on a ventilator......but even though we are "only" there on weekends, it is taking its toll on us physically and emotionally because of our jobs, our kids, and the responsibilities we have in our own homes.......having to relocate kids, pets, etc. every weekend.......but we don't complain (only on this site!), we go and give Mom our support and care every weekend, as well as serving meals to our Stepfather, doing his laundry, changing his sheets, etc.....here's where i want to scream: StepDad's kids are resentful that their Dad is helping to pay for the caregiver (who takes care of their Father too, not just Mom) because they think "Dad doesn't need the help"... they are clueless as to what he needs (they never come up to help), and now they say my sisters and i should be there MORE to save their Father money! HELP! i'm so angry.....