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Oct 10, 2007
St. John's
I am reaching an 'at the end of my rope' moment, so I thought I would just defuse here..please excuse my flurry of typing.

My dad is progressing throughout the ivig treatments, rapidly (for those of you who don't know the background, he was initially diagnosed with ALS last summer, then it was backpeddled, they tried ivig treatments, but we are approaching our 6 month trial end, and there seems to be no apparent change). I know I should be on the MNN boards, but with his progression, it appears to me that the ALS/ MND board will understand my feelings a little better right now. I know a reassessment and another EMG is coming up for him in April to determine where our diagnosed stands. He is no longer really able to stand (or move his legs on his own) and his arms are weakening beyond the point of being able to lift them higher than elbow high. In the meantime, my mentally unstable mother (his prime caregiver), refuses to allow homecare of any type into the house, and though she complains that not enough help is being offered by the family, those of us that DO offer help (I'm out there every night to help get my dad into the bathroom), she pushes away or destroys relationships with. She is a weak character and god love her, she's tried to manage on her own, but I know that she has cracked. So on top of all of this, a few weeks back, she insisted on having my uncle and I (i am 130 lbs of little girl strength:p) get him to the car from his wheelchair (she was still resistant to using wheelway public transport at that point, since this time she has been forced to), and in short, dad ended up breaking his foot because we could not support his weight fast enough to keep him from falling.

I have nooooo idea where to go with this. Family relations are strained to the max, there are rifts forming between my parents and their kids/ grandkids. People want to help dad but cannot get past my moms stubbornness. The appropriate measures are not being taken to make the house, and my dad's life, more accessible to him, and he is confined in every sense of the word, within himself and within that house. I know that social services could be called in, but what are my other options here? On top of it all, it kills me to see my dad's spirit being crushed because of all of this. I feel like he would say something to her if he could, but I feel he's screaming on the inside but he feels he cannot say anything because it will upset the one person he is completely dependent upon at this point to even move him around, the little that he can right now.

he seems to be scared to leave the house and go in public, fearing people will see his state and that he is confined to a wheelchair. they refuse to let homecare in because of every illogical excuse in the book.. and they will not listen to reasoning.

when i found out of his diagnosed last summer, i chose to move back closer to them in order to help out, however i find that i am being pushed to my limits like i never thought i could be, but also being taken advantage of for the help that i have offered. i am turning into a verbal punching bag for my mother, and i cannot take much more. my own relationship is suffering horribly due to my stress levels, and my work is as well. It is just so frustrating because this situation is stressful enough as it is, but all the family dynamics and interrelations are what are truly keeping us from working together as a capable unit for dad's sake.

someone yank me back to reality ! i know we must all endure this process and the tribulations set in front of us, and that we each must rise to the occasion, but it truly seems too much to bare at times. And those times are now daily. I know we still have so much further to go yet... how do you hold on over and over again? Feels like I'm losing all sanity sometimes!

if anyone has had to endure such difficult family moments, I'd love to hear of them:) I know I must not be completely alone in this..

god bless.

I'm not sure what to say here. It's clear that you're in a terrible situation and I'm sorry. There's no simple solution for this.

The only thing I can think of (and others step in here please) is to take control of what you can control. You can't change your father's plight, nor can you fight with your mother. But you can stop her from treating you badly by extricating yourself from the situation. Your parents need home care and they won't get it if you're always around to help. So you might say to Dad, "I know your situation is really hard and I'm there for you in spirit, but I need to take a few days off," and then do it. Let your mother scream and carry on and just say firmly, "I can't be the home care worker. You need to hire someone."

That's about all I can think of, in order to tip the balances in a more healthy direction.

Good luck and please check in with us!

Hi Lola64,
I'm sorry to hear that you and your family are going through all of this. Family dynamics can be a tricky thing under good circumstances, but stress and emotions make them even worse.

From what you described, our family had a similar situation last year when my mother-in-law was in her final stages of lung cancer. Without devulging all of our dirty laundry and sparing you the nitty gritty, everyone had to put aside all of their personal feelings and make sure that mom was the priority. Yes, we had to blast each other a little bit, feelings were hurt for a little while, but she was the focus of care. She needed around the clock care for the last few months, which is not as long as ALS patients, but getting our schedules and routine to work with her was the same.

My mother-in-law was also stubborn and didn't want any of us to stay with her, but there comes a time when roles do reverse, but you just have to find a way to squeeze back in without being overbearing. Maybe your mom feels like she is giving up what little control she has left. In that regard, we would let her make decisions and we would implement them. With your situation, she needs to feel like the caregiver still, but you and others need to find a way to let her delegate duties to you and maybe she will soften a little bit.

Life is such a delicate balancing act and when more family members are involved, the balance gets totally thrown off. If everyone can put your dad in the center, the rest will have to balance on either end like a teeter-totter. :) Hang in there.

This isn't easy. We are at the beginning, and I can't even think too far down the road, but I hope if/when things get really tough for him that I do not make our kids feel that I don't need or want their help... I know that I will. I can only hope that this will make us grow closer and not apart. That would make my husband feel even worse if that should happen.

My best to you and your family.
Pam B in Va
Lola, I can understand why you feel so frustrated. Now is the time to get a handle on this situation before it goes any further. This caregiver situation is going to go on for a long time. I appreciate you wanting to help all you can with your Dad, but something else to consider is how will this effect your own family?
Please consider the long term effects on your own family. Much less yourself. I know it is hard to have to face decisions about your Dads care and worry about hurting your Mom. It sounds however like this could even be a case for a social worker from the standpoint of elder abuse.
You need somehow to get someone else involved, whether through a family Doctor, social worker, etc. so a third party can evaluate his situation and get him the proper care.
My Dad had Alzheimer's and we had to put him in a nursing home. It was hard, but for the health of your family and your siblings families, something needs to be done. I encourage you to pick up the phone and call in a third party to get involved.
Hello Lola- I am glad you decided to reach out to us! Everybody has some good ideas and I really don't have much more to add. Your situation reminds me of when my Mom was first DX'd with AZ/dementia and everybody was arguing about how best to care for her. My husband Lee actually brought it all down to the nitty gritty for us. He said, "This is not about anything other than your Mom. It is all about her right now and everybody will have to fall in line."

Please write back and let us know how things are going...Cindy
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