PALS & caregiver at odds

[postinganon]

I've started this post a million times, but decided against a million and one. Finally, I decided to create a second anonymous screen name so this post wouldn't be searchable using the same screen name I use everywhere on the web, including here!

My mother is the primary caregiver for my father and she is COMPLETELY overwhelmed. She tells me that she is not emotionally strong enough to handle this. She doesn't understand how others can do it and cries constantly. I really do mean constantly. She has cried at every medical appointment since diagnosis including physical therapy, speech therapy, and even during a meeting to get a modified van. She calls me several times a day in tears. She tells my dad that she can't handle his care, too.

My dad now vascillates between totally apathetic and angry bordering on aggressive (were he to have the mobility to be violent).

The dynamics in my parents' relationship is odd. They've always griped at one another for little things (enough that my preschooler points out how negative they are). Now, it's ramped up a bit. Recently, Mom was frustrated with Dad after he had asked for a few things. When he asked that the blinds be drawn, she replied, "Why don't you get up and do it yourself?" Because he can't.

I know he feels like a burdon and I know that she is totally overwhelmed. I handle making and attending all medical appointments, finding equipment, changing medication, coordinating billing, borrowing from and working with the ALS/MND groups, etc. In other words, my parents don't have to worry about the "mechanics" of the medical care. My name and number is on every record.

The problem? I'm really worried about both of them. Dad needs help with his emotional imbalance. Mom says she won't help with anything psychological because Dad refuses help and then she becomes the "bad guy" for telling him he has issues. Mom won't take time out to do anything to help her own emotional state. They argue constantly and because of the role I've taken on, I'm in the middle.

I'm stumped. I cringe each time my phone rings (5-6 x's per day from Mom). Sometimes it's while I'm at work, sometimes it's at midnight when Dad is angry because he can't sleep.

More than anything, it frustrates me that we're not only dealing with an illness, but also with insane family dynamics.

[cukita99]

ur mom needs help. my son was only taking care of me on weekends but he lost it cause it was too much to handle. not to much the help but the fact of the disease destroying his mom and there's nothing he can do. he to cried all the time. so i hire some help every other weekend and that seems to help him some.

[postinganon]

Agreed, cukita. Thanks for your thoughtful reply!

My parents have a caregiver twice a week and a nurse visits a few times a week. I hoped that will help, but it's created other issues. Dad is unhappy being with anyone but Mom or me. Mom feels guilty for doing things for herself because Dad tells her he'd rather have her (or me) there instead of a stranger. He tells us we need to see things from his point of view and that it's embarrassing being around others. He won't leave the house any more, either, except to go to medical appointments.

He has a clinic appointment in the very near future and I hope this will turn things around. I've called ahead to stress what a HUGE problem this is and to ensure it will be addressed.

[tdamess]

that's a smart move ...as they will be able to find a way to help all of you

[stephie]

I totally understand what both of your parents are going through. It is so hard physically and mentally to take care of a loved one with ALS. When my husband is in a good mood and thanks me for what I do, it makes everything so much easier. But when he is crabby or depressed, my job is a hundred times harder. People need to know that their hard work is appreciated. If your Dad is not able to do that right now, maybe you can let your mom know how glad you are that she is there to take care of your Dad. I know it seems like she should not need to hear it from you, but she does. When I get crabby or complain, my husband starts to feel like a burden and he gets more depressed. It is a vicious cycle. I finally learned that I need to tell him often that even though this disease is a burden, HE is not!

[mare]

Stephie-
That is a great comment- "this disease is a burden, he is not".
It is a burden for BOTH the PALS & the CALS. And, I think, it is something that always has to be remembered. My husband is always saying, "I'm so sorry you have to do this" or "I feel bad you have all the work". My comment to him is "...and I'm sorry you have to deal with ALS" or "...and I feel bad you have ALS".

Postinganon-
I don't have much to offer, other then possibly if you can discuss this with the counselor at your clinic. (but, I assume you already thought of that. You do seem to be on the ball!)

I just know that some people just can't handle things of this nature, and I don't mean just ALS. I have experience with seeing this; different people (family members) take on different roles. Some just can't handle the physical, let alone emotional, demands.

Sometimes, you have to accept, you just can't change people. You can only change how YOU react to them! You can only do the best you can do in any given situation!