Mom has ALS/recently moved back in with my parents

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jtol_99

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11/2016
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NM
Hi everyone, I'm new here. My mom was diagnosed with ALS in late 2016 and the age of 50. I graduated high school several months later and then moved out of state for college as I had scholarships which covered everything. I admit i didn't take her diagnosis well and for a few years I did anything to avoid coming home for visits. I would only visit a few times a year. Due to the pandemic i didn't visit at all in 2020. I graduated college early in December 2020 and started the process of looking for a job in the field of engineering. Things haven't been going well on that front and i moved back home in February and have been working from home in customer service while looking for engineering jobs. It's been tough as it been years since I haven't lived with my parents. My mom is wheelchair bound and her speech is starting to slur. Little by little, I'm learning how to assist my dad with her care as he is her primary caregiver and receives help from a close family friend. There are times I feel guilty for not visiting as much in the past. My mom does plan to go on a ventilator when the time comes because she wants to stay alive as long as possible. Any advice on how to cope and bond better with my parents/
 

nona

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I am sorry about your mother. She is my age and you are both young. That sucks.

From a pALS perspective, I think the first step is letting go of the past and forgiving yourself for going away to college. I'm sure that your parents wanted this for you and they will want you to find a fulfilling job. And you were thoughtful in not going home during COVID-- too much risk. So let it go.

The first step in helping is to ask what's needed. They probably have a routine and know what they prefer to do together and where you can step in. Let them guide and teach you. Honor their decisions. It sounds like you already are. A trach will require more care and you will be able to help your father and friend with those responsibilities when the time comes.

As for coping, I'll defer to CALS, but I can say that it will be hard for your mother to carry any sadness, guilt, or frustration you feel. Give her love, and if you need to share the other feelings, talk to someone else (unless she wants to go there, in which case it's fair game). This forum is a great place to vent and seek solace. Some ALS clinics and ALSA chapters have support groups. I don't know about your mother, but I have a hard time with friends and family who come to me with sadness when I'm not sad. They want comfort and reassurance and that's emotionally hard when the patient is the one living it. I hope that makes sense.

I It sounds like you're in a good place and asking the right questions.
 

MToole

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Messages
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Take it day by day. Every day is a gift. Enjoy and make memories.
What type of engineering are you in? Are you close to Los Alamos?
 

jtol_99

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Joined
May 29, 2021
Messages
2
Reason
Loved one DX
Diagnosis
11/2016
Country
US
State
NM
I am sorry about your mother. She is my age and you are both young. That sucks.

From a pALS perspective, I think the first step is letting go of the past and forgiving yourself for going away to college. I'm sure that your parents wanted this for you and they will want you to find a fulfilling job. And you were thoughtful in not going home during COVID-- too much risk. So let it go.

The first step in helping is to ask what's needed. They probably have a routine and know what they prefer to do together and where you can step in. Let them guide and teach you. Honor their decisions. It sounds like you already are. A trach will require more care and you will be able to help your father and friend with those responsibilities when the time comes.

As for coping, I'll defer to CALS, but I can say that it will be hard for your mother to carry any sadness, guilt, or frustration you feel. Give her love, and if you need to share the other feelings, talk to someone else (unless she wants to go there, in which case it's fair game). This forum is a great place to vent and seek solace. Some ALS clinics and ALSA chapters have support groups. I don't know about your mother, but I have a hard time with friends and family who come to me with sadness when I'm not sad. They want comfort and reassurance and that's emotionally hard when the patient is the one living it. I hope that makes sense.

I It sounds like you're in a good place and asking the right questions.
Thank you for this kind message. I have a hard time forgiving myself for not visiting as much I should have pre-pandemic.
 

lgelb

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I'm sorry to hear about your mom. The best way to "forgive yourself" or get past your guilt is to express yourself in how you support your parents -- it's a show, not tell situation. You have received great advice about moving forward in their context.

Best,
Laurie
 

JimInVA

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Our daughter (Connie) was 23 when her Mom (my wife, Darcey) began to have difficulty walking and getting back up from a sitting position. I can remember the times that she'd yell at her Mom and accused her of just being lazy. She'd say, "Quit being lazy and get up and walk on your own!" as she'd walk out the door slamming it behind her. I also remember Darcey smiling and saying to me, "Please don't take offense when she talks like that. It must be terrifying to her to see me struggling like this... and she just doesn't know how to cope. We see it most when it comes out in the form of anger."

For the next several years, Connie would move home long enough to save up some money and find a new roommate so she could move out, again. It was easier to ignore the situation when not in so close a proximity. We understood that and privately cheered her efforts at independence. She then moved to the opposite side of the country (from VA to Seattle, WA), where she lives to this day.

We NEVER waivered in our love for our daughter. So I can assure you that your parents are exactly the same. All we, as parents, want... is for our children to find happiness and to better themselves. Congrats on achieving your Engineering degree. Your parents are so proud of you. And there is absolutely nothing to feel guilty about. Parents never want to be a burden for their children.

There has already been some wonderful advice suggesting that you ask how you can help. And don't be dismayed if, initially, they might find difficulty in telling you what you can do. Just stay involved... even if only watching. If you see something you can do, say, "if it will help, I can do that". See where that goes.

You ARE the best daughter they could hope to have! Remember that!!!

My best...

Jim
 

Nuts

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You've already heard from some of the people I admire most here. I would just add that there are two kinds of friends and family--those who leave when the going gets tough and those who step away initially but then step in when they are most needed. That you were able to finish your education despite ALS is a blessing to your entire family. That you are there now and looking for ways to help is another kind of blessing and no doubt what your family needs from you. Guilt is a wasted emotion that only does more damage; have the conversation with your parents. Ask them how you can help and then look for ways to step in. Jim is right--they may not know what to ask of you initially (I'm sure someone could write a book on just that aspect of this disease)--so be patient and stay involved and soon you will all see many many ways that you can be of help (whether it's direct hands on help with your mom or general tasks around the house that your dad has increasingly less time and energy for). My guess is that just spending time with your mom will be precious to her.
 

ReginaS

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--
Perhaps - and perhaps not: Directing guilt at yourself could be a way to at least have the illusion of control in a situation that will make anybody feel rather helpless and sad. Watching my dear partner lose one ability after another, seeing his muscles shrink and both of us having to deal with the consequences and basically not being able to do much, definitely having no way of "fixing" it - but staying right there, I found that really, really hard.
Good for you for getting a degree. My daughter went back to college too and finished. It was hard for her too.

Not everybody is ready to deal with ALS right away - not the PALS and not the CALS. There are very many variations on how people approach their difficulties with accepting ALS and it might come in degrees.

A friend of mine tells me repeatedly: "First and foremost, take good care of yourself because then you will also have the strength to give to others." I cannot give to others what I don't have. Knowingly or not, you might have taken good care of yourself in college - in many ways.
I am a mother and have 2 daughters out of college now. Both are working as engineers :) and for one it's the first year on the job. She is living with me and works from home bc of covid. I love it when they include me and let me see who they are, what they like, enjoy, think, or when they share what bothers them... basically when there is trust and love between us that shows in little gestures.
One thing that helped me when I did not know how to best help my partner - and I do that with my daughters too: try, try and try again, give myself time and space to figure or try things out. No more critical self-defeating thoughts - I was/am doing my best and it sure was/is not perfect - but it's real.
Wishing you all the best.
 
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