My dad was recently diagnosed- looking for support

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Meicat

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Hello Everyone,

I am new to this forum and this is my first post. Basically it has been a very rapid decline over the past year and today was the day my dad has received his diagnosis. I am in college and I have a job, and I have been taking care of him before the diagnosis. Knowing now what it is and I have an idea from reading about this disease about what to expect in the future. I was hoping this forum could point me in the direction to others that also take care of their dad, while also being young and having other commitments. Any advice would be much appreciated. Especially any advice to cheer him up or make his day more eventful. He cannot walk anymore or any mobility, so he spends his time in his chair all day. Some background: His fingers can still slightly move but he cannot lift his arms up or walk. He is completely dependent on me and my family to do everything for him. His speech has really gone downhill these past two months, I notice it gets worst every day and his breathing seems hard sometimes for him. He is not on any assistance (yet), we do have to feed him and he can still swallow as of now.
Thank you, any support and advice would be helpful, since I do not know anyone who Is dealing with all of this or have a clue how to proceed.
 

lgelb

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I'm very sorry to hear about your dad, Meicat. If his breathing is getting rough, I would talk with his clinic (is a social worker there helpling you?) or any of his docs about getting him a BiPAP. With a nasal mask, he can still eat and talk while using it, and it's best to start using before things get too far advanced, when it's more difficult to adjust and there's a set point past which it's less effective. If a feeding tube is required down the line, it's good to be using the BiPAP if he needs one, before that procedure, as well.

Not sure how old you are, but my 30-something son lived with us and helped care for his dad day-to-day; I can send you his contact info if that would help.

Best,
Laurie
 

affected

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So sorry to welcome you and for this diagnosis.
If you want to talk with other young adults caring for a parent the ALS Caregivers group on FB has loads of them there and it is a private group.
We will support you here too, but we don't have active CALS in your situation here that can give that emotional peer understanding. I found different groups or forums gave me different types of support and really rounded out to give me what I needed.
 

Meicat

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Thank you that sounds great
 

bassy77

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My mom was diagnosed about 2.5 years ago. The first almost 2 years she was in NC and my family is MA. She has a wonderful group of friends and a partner of 15 years. However, her and her partner never lived together and he isn't the type that could drop everything to be a fulltime caregiver and she didn't want to put that on him. So we sold her house and were able to build a house directly next door to us. She moved up her back in July. It has been great to have her closer, but also incredibly stressful. Like your dad, she spends most of her day watching TV. After being extremely social and active, it is tough to see her struggle.

We recently brought up the idea of an anti-depressant. At first she was hesitant, but decided to give it a try. I'm hoping that might make her more interested in doing some other things. We also bought a subscription to audible thinking she might like to listen to books, but she hasn't tried it yet. We try to get our kids to play board games and/ or puzzles, but again she has had little interest. Maybe the anti-depressant will change that.

The only real advice I have is to keep encouraging them to try different things. I know I annoy mom in this way, but I also know that she is thinking about it and begrudgingly trying. I can't imagine how hard it is to learn to communicate in a totally different way at age 69. Also, not being able to do almost any of the things you loved to do before the disease.

The other advice is to try to hire some amount of help. Even a few hours a day will take a huge burden off your shoulders. It might also give you some time to be with dad just as a daughter and not as a caregiver.

It is tough. I feel guilty daily about if I'm spending enough time with her as I work and also try to be a husband and father.
 

Meicat

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Thank you for sharing that... it helps knowing I am not alone. We are trying to get him on board with hiring home help. Being a caregiver full time with my step mom is becoming more than we can handle, I am not sure how much longer I can physically and mentally take care of him like how I have been. Especially since he is progressing so fast.. he has not been able to stand on his own today and his voice is going really quick. It is so hard, my dad is 6’6 still 290 pounds versus me not even a quarter of his size and my step mom. We are starting to break our backs and hurt our shoulders lifting him every day.. all so stressful.
 

Meicat

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Laurie, my apoogies for my long inactivity on here, I have been taking some time to just process everything. But I think it would be helpful if I could reach out to your son.. now that I have accepted the diagnosis and can talk more openly about it.
 

lgelb

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No worries, I sent you his details in a PM.
 
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