A daughter in search of answers for her father...

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ash2012

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Almost a year ago, my dad was officially diagnosed with ALS. He showed atypical symptoms for a year up to that point (it presented more like Parkinson's disease), which is why the doctors weren't comfortable calling it ALS until they truly ruled out every other possibility. And as I'm sure many of you know, that process can take quite some time and is exhausting in itself.

My dad is 63 years old, and I'm just shy of 30 years old. I relocated to my home state just months before his diagnosis (the universe provides) because I was ready for a change of pace in my own life. I now live two hours away from my parents, which has turned out to be a bigger blessing than I could have anticipated. I work remotely and have the flexibility to travel whenever I'd like, so I drive home once a month and spend approximately a week at a time at home with my dad, my mom and our family dog. (My brother lives just 30 minutes away from them, works for the family business and visits frequently).

As I complete my first year back in my home state, I'm observing how we've fallen into this comfortable visiting routine where I help clean, cook and just try to be a force of positive energy in the house. But I'm feeling more and more uneasy as my dad's condition gradually progresses. The part I'm playing just doesn't seem like enough. My mom sounds exhausted and depleted all the time, both on the phone and during my visits. Talking makes my dad really tired, so we can't have deeper conversations when I'm home and we barely speak on the phone anymore. He's progressing gradually. They have yet to bring nursing staff into their home to help take care of his hygiene needs, but I think that's only a matter of time.

It just feels like we find a way to manage what it currently is and then just wait for it to get worse. We also don't openly talk about what it will mean as things get worse (hello, compartmentalization). So I feel stuck. And nervous. And so impossibly sad for both of them that this disease is now eating up every bit of their time, energy and existence.

I'd love to connect with anyone else here feeling similarly or who has been in my shoes and can offer advice, support, anything. I appreciate you reading this — it's my first forum post.
 

KarenNWendyn

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Welcome aboard, though sorry about the circumstances. Is your dad plugged into an ALS clinic or local support group? If so, you might find that accompanying him to the clinic or support group is a good way to do reality checks with him about his current situation and his level of preparation for the future.

Since your mom is exhausted and you and your brother can only be there part time, hiring outside help will be important for both your parents. You could start with someone part time, say a few hours a couple days a week, and work up from there.

In any case, you’ll find good support on this forum. Don’t hesitate to ask lots of questions.
 

Ken15

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Welcome - sorry, you have to be here.

A couple of links to get you started:

Anticipatory Planning

ALS from Both Sides (a nurse who is also an ALS patient)

If you provide additional information on your dad's current capabilities and limitation, you will get quality advice and suggestions from other forum members.

Similarly, with your mom, many CALS here have been through it all and will be able to provide insight and suggestions for reducing her burden.

Ken
 

lgelb

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Hi, Ash, sorry to welcome you here.

Some CALS manage to take care of their husbands solo or with family help, and others do not. It sounds like you are pretty sure your mom will be in category #2. Have you talked with her separately? Does she have all the equipment they will need, like a hospital bed, Hoyer lift, wheelchair and the like? We had a recent thread on ways to find part-time help if she needs it. Maybe she could use recruitment/logistics support in this regard?

I guess what I'm asking is, what do you think is holding up the planning you think isn't happening? What is exhausting and depleting your mom, specifically? It's always easier for us to advise when we understand more of what the "stuck part" is. For most P/CALS, although this is definitely a time sink of a disease (major understatement), there are still moments of discovery and joy as there are in "normal life." If your parents are not finding these, I feel sure there are ways to make it so.

Your mom is welcome here, too, of course, even if only as a lurker. If she is not usually a forum type, you might show her some posts and how to use the search bar, so she can do that if she ever wants to and you are not around.

You sound like someone who will support your family however you can, and we will do all we can to help you do that.

Best,
Laurie
 

Lkaibel

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It’s great you are there for your parents. Your mom probably appreciates that more than you know, and your dad too.

Agree with starting with a little help at home. We eased in that way.
 

ash2012

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Welcome aboard, though sorry about the circumstances. Is your dad plugged into an ALS clinic or local support group? If so, you might find that accompanying him to the clinic or support group is a good way to do reality checks with him about his current situation and his level of preparation for the future.

Since your mom is exhausted and you and your brother can only be there part time, hiring outside help will be important for both your parents. You could start with someone part time, say a few hours a couple days a week, and work up from there.

In any case, you’ll find good support on this forum. Don’t hesitate to ask lots of questions.
Thanks, Karen.

Yes, he's been going to an ALS clinic every three months since his diagnosis to track progression, learn about what to do next, etc. I was able to attend with him and my mom in April, which was definitely helpful from an educational standpoint. It was also nice to hear information directly from doctors rather than second-hand translations through them (appreciated, just not always as clear). He tried a support group, but I think it left him more upset than uplifted so he stopped going.

I'm visiting with them again next week, and I plan on gently pushing the at-home help idea again — at least when it comes to hygiene and stuff. Even just a couple of hours of assistance to give her a break (and give her time to take care of herself) would make a huge difference.

They have both done extensive research, they've gotten the handrails and wheelchair and other home accessories, and they know what's potentially to come. I guess my struggle is less so not logically understanding ALS but more so emotionally and spiritually processing what my family still has yet to go through. I'm someone who does a lot of advanced planning and visualization to face life's biggest challenges, and I have yet to find a way to mentally prepare myself for the future here...
 

ash2012

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Welcome - sorry, you have to be here.

A couple of links to get you started:

Anticipatory Planning

ALS from Both Sides (a nurse who is also an ALS patient)

If you provide additional information on your dad's current capabilities and limitation, you will get quality advice and suggestions from other forum members.

Similarly, with your mom, many CALS here have been through it all and will be able to provide insight and suggestions for reducing her burden.

Ken
Thank you, Ken. I appreciate the resources, and I'll definitely do so in my future posts.
 

ash2012

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Hi, Ash, sorry to welcome you here.

Some CALS manage to take care of their husbands solo or with family help, and others do not. It sounds like you are pretty sure your mom will be in category #2. Have you talked with her separately? Does she have all the equipment they will need, like a hospital bed, Hoyer lift, wheelchair and the like? We had a recent thread on ways to find part-time help if she needs it. Maybe she could use recruitment/logistics support in this regard?

I guess what I'm asking is, what do you think is holding up the planning you think isn't happening? What is exhausting and depleting your mom, specifically? It's always easier for us to advise when we understand more of what the "stuck part" is. For most P/CALS, although this is definitely a time sink of a disease (major understatement), there are still moments of discovery and joy as there are in "normal life." If your parents are not finding these, I feel sure there are ways to make it so.

Your mom is welcome here, too, of course, even if only as a lurker. If she is not usually a forum type, you might show her some posts and how to use the search bar, so she can do that if she ever wants to and you are not around.

You sound like someone who will support your family however you can, and we will do all we can to help you do that.

Best,
Laurie
Thanks, Laurie.

So far, my mom has done such an amazing job. I'm truly in awe of her. She's coordinated getting the handrails and wheelchair ramps and the chair itself alongside my dad, so they are logistically prepared.

I'm just fearful that she will burn herself out worrying about my dad 24/7 and not remember that she needs to allow some time to take care of herself, too. I know that won't really happen until she gets a little at-home care for him — a couple of hours a day — but she says they are waiting until they absolutely need to so they can cherish the little remaining privacy they have left in their marriage. I can't say I blame them, but she has a history of mental illness, and I just can't imagine what would happen if she pushes herself too far and has a relapse of some kind. I'm visiting with them again next week, and I plan on gently pushing the at-home help idea again — at least when it comes to hygiene and stuff. Even just a couple of hours of assistance to give her a break (and give her time to take care of herself) would make a huge difference.

I think the "stuck" part is now that they have the house properly set up and the equipment he needs and his current routine down, it's difficult to start processing the steps that haven't happened yet. What is it going to be like having caretakers other than her roaming her house? What is it going to be like if/when my dad can no longer speak to her? Right now, they are still a tight-knit team. But I know that dynamic will have to shift as he progresses, and we don't talk openly enough (in my opinion) about the "what then."
 

ash2012

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It’s great you are there for your parents. Your mom probably appreciates that more than you know, and your dad too.

Agree with starting with a little help at home. We eased in that way.
Thanks <3 It brings me peace knowing I can participate to this extent, too. None of us will regret how we've spent this time together.

I am going to gently push her about at-home care when I visit them next week. Even just a couple of hours a day so she can tend to her own health and needs would make a world of difference in the overall balance of things.
 

Ken15

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Ash,

Below is a brochure I received when attending a local support group meeting. While it is promotional for the company in question, I think it covers most of the points to consider when selecting a home health agency.

We went with a different company after interviewing the company owner in our home. We are starting out slow and easy, 1 seven-hour visit every 2 weeks, so my PALS gets used to someone other than me providing her care. Our aide fixes meals, does toileting, light housekeeping (laundry, vacuuming the master bedroom, changing mbdrm sheets), ROM exercises and is a good conversationalist. So far, so good . . .

Good luck with your search . . .

Ken
 

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Lkaibel

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You definitely will not regret spending this time together Ash. Your mom probably has no idea how tired she is. I know I didn’t. If/ when she hits that place where no matter who is there she feels guilty leaving the house, sneak her out for a movie or even just a coffee sometime. Your dad will benefit greatly from the preservation of his primary caregivers sanity!
 

ash2012

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Ash,

Below is a brochure I received when attending a local support group meeting. While it is promotional for the company in question, I think it covers most of the points to consider when selecting a home health agency.

We went with a different company after interviewing the company owner in our home. We are starting out slow and easy, 1 seven-hour visit every 2 weeks, so my PALS gets used to someone other than me providing her care. Our aide fixes meals, does toileting, light housekeeping (laundry, vacuuming the master bedroom, changing mbdrm sheets), ROM exercises and is a good conversationalist. So far, so good . . .

Good luck with your search . . .

Ken
This is great — thank you, Ken. I'll share it with my mom, too.

And I'm glad your current assistance is working well for you. It seems like that transitional phase is really important.
 

ash2012

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You definitely will not regret spending this time together Ash. Your mom probably has no idea how tired she is. I know I didn’t. If/ when she hits that place where no matter who is there she feels guilty leaving the house, sneak her out for a movie or even just a coffee sometime. Your dad will benefit greatly from the preservation of his primary caregivers sanity!
I think you're right, Lenore. You all have helped me gain that extra confidence to broach these topics with her more directly next week and help her start making some plans so she can breathe a little easier. I really appreciate it!
 

Lkaibel

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That’s great to hear Ash. You’re an awesome CALS and daughter.
 
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