Old 02-24-2019, 07:08 AM #1 (permalink)
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Default My Dad was diagnosed a year ago and I知 looking for some support

Hello all,

My father was first diagnosed with lower motor neuron ALS roughly one year ago. He got the official diagnosis in September 2018 when they were finally certain that it was not CIDP. Within the week my Dad was diagnosed, I accepted my first job out of graduate school and moved 2 and a half hours away. A few weeks later, my mom was diagnosed with Stage 4 gastric cancer. My family was completely devastated. We are all very, very close and it all came out of nowhere. My parents have led healthy, active lives and before we knew it everything changed.

My dad is still walking, and I知 trying to be thankful for that. But I come home to visit most weekends and it seems like every week he loses more and more arm strength. He痴 barely scraping by to feed himself at this point. My mom is doing fairly well to take care of both of them but everything just seems to be getting harder and the hardest part is that they are both going through something so scary and it痴 so hard for them to lean on each other when they need emotional support now more than ever.

I知 a speech-language pathologist and I work at a hospital where I see people with various diseases and disorders, including ALS. I always considered myself an empathetic clinician but I have to admit I had absolutely no idea what my patients go through until I致e seen it happen with my own family. There is so much that I took for granted.

I知 just so scared. Looking for some support and any sense of hope from someone who has been through this because I don稚 know how I知 going to be able to deal with this.
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Old 02-24-2019, 07:49 AM #2 (permalink)
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Default Re: My Dad was diagnosed a year ago and I知 looking for some support

Hi. I am so sorry. Welcome and I think you will find lots of support here.

Your post struck a chord with me as both my parents were diagnosed with catastrophic and terminal illnesses simultaneously. My non ALS parent actually died first.

I was living and working an hour away. The situation became unmanageable as they needed more help and supervision and they ended up moving near my sister.

Do you have siblings? My sister and I worked together and that helped.

Do your parents have the resources to hire help? Is your dad a vet and if so are they getting VA benefits?

Being in the medical field helps you understand and navigate and the horrible experience is making you a better clinician. Remember, though, your primary role is being their child.

Please don’t hesitate to ask any questions
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Old 02-24-2019, 05:52 PM #3 (permalink)
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Default Re: My Dad was diagnosed a year ago and I知 looking for some support

I'm so sorry but I can relate. I was caregiver for both my mom and dad. Ma died of colon cancer and dad of COPD. Both illnesses dragged out pretty much.

My housemate's mother had a heart attack and went on dialysis at the same time her husband was diagnosed with terminal brain cancer. I was very close to both of them. Having both parents sick and being the only child was very tough for my housemate, and for me. We both worked full time teaching at a college during all of this. We had to hire paid help and then Fred's only niece (his sister died of breast cancer at 33) moved Fred's mom in with her because she had a larger house and was a paramedic. His mother had enough money for full-time caregivers during the last two years of her life. She was on home dialysis so we were always hiring new CNAs and training them.

I hope you can recruit some family/friends/help because it will be needed.

I'm so sorry you find yourself here but we will support you the best we can. Our combined experience covers just about everything.
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Old 02-24-2019, 05:59 PM #4 (permalink)
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Default Re: My Dad was diagnosed a year ago and I知 looking for some support

Thank you for your response. It痴 amazing to read about all these people out there who are going through this (or have been through this) too.

To answer your questions-

I have a sister and brother-in-law who live 10 minutes away. They currently help with things around the house and my sister will often bring them meals so my mom doesn稚 have to cook. We also have aunts and uncles, and close friends nearby who have been an amazing support system to us. Friends come by often to help my parents with all sorts of things and we are so thankful for that. But somehow I still feel guilty because as their daughter I feel like I need to be there more than I am. But when I come back to work from a weekend at home I feel completely emotionally drained and sometimes I feel like I can稚 go back every weekend because I emotionally cannot handle it. And that guilt is something I am really struggling with.
They do have the resources to hire help, they are just holding off until absolutely necessary because they know that they both are going to need a lot of money set aside for healthcare expenses. From my experience this past weekend watching my Dad become completely exhausted trying to get dressed (even with my mom helping), I really think they need to start looking at some home health options. I知 not sure how much longer my Dad will be able to participate in his basic hygiene and activities of daily living without someone providing complete assistance given his profound upper body weakness. He is not a veteran, so no VA benefits or anything like that.
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Old 02-24-2019, 06:38 PM #5 (permalink)
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Default Re: My Dad was diagnosed a year ago and I知 looking for some support

First and most importantly, please don't feel guilty. Your job is important now and for your future. Your parents know this.

Maybe if both you and your sister come up with a care suggestion for your parents, you can all decide what to do now and in the future. I sprained my ankle about a year after I was diagnosed and hired a lady a couple of days a week to do the things I would normally do at that stage (cooking, light cleaning, laundry, errands.)

For me it was EXTREMELY difficult to be on the receiving end as I was used to being the one who did things. If you explain to your parents that getting outside help will also help you and your sister, physically and emotionally, it may be better received.

You'll have to decide whether to hire from an agency or hire individuals. I'll probably do a combination of both since I have no family. I understand the need to carefully allocate resources because I'm in the same position. Discuss all of this as a family and things will work out.
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Old 02-25-2019, 03:15 AM #6 (permalink)
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Default Re: My Dad was diagnosed a year ago and I知 looking for some support

Sorry to welcome you, Greenville, and to hear about your mom and dad.

I'm glad there is family support. I understand being a daughter and feeling like you should show up, but guilt won't help you be a better daughter.

When you note his becoming exhausted from getting dressed, as an example, I would suggest that you encourage both of them to consider tapering off the time and energy spent on dressing to things that bring more joy. He may be used to dressing just so, but as you search here and learn more from other resources, you will see that sweatpants, larger shirts that button, slip-on shoes, etc. are often part of the adaptive process that P/CALS and other people with weakness go through.

So your biggest contribution at the moment may be encouraging that mindset of allowing themselves to make their lives easier, not only in accepting whatever help they need, but in moving the goalposts of their daily go-do's.

Best,
Laurie
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Old 02-25-2019, 09:44 AM #7 (permalink)
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Default Re: My Dad was diagnosed a year ago and I知 looking for some support

I知 sorry to have to welcome you here Strombe. I don稚 have too much to add except that we池e here for venting and support. Hugs to you.
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Old 03-01-2019, 07:20 PM #8 (permalink)
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Default Re: My Dad was diagnosed a year ago and I知 looking for some support

Have you contacted your local ALS chapter? In our area they offered 18 hours a month of help. We scheduled that help for two hours, two mornings a week to help with baths, grooming, and ROM exercises. So it basically gave us 9 mornings a month of help that ALS provided free of charge. The caregivers were provided through a local agency. It might be a place to start.
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Old 03-02-2019, 06:48 AM #9 (permalink)
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Default Re: My Dad was diagnosed a year ago and I知 looking for some support

Thank you so much everyone for the helpful responses. We will definitely look into the local ALS chapter.
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Old 03-02-2019, 01:04 PM #10 (permalink)
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Default Re: My Dad was diagnosed a year ago and I知 looking for some support

My mother had already passed when my father was diagnosed with ALS. He died from it age age 81. He suffered for I think 3 1/2 years after being diagnosed.

My dad had limb onset. He used a bi-pap for only a month an then by some miracle never needed it or oxygen again. He could eat almost anything and never needed a feeding tube. He just got paralyzed basically in all his limbs. He never lost his voice either but he would get hoarse at times and had to rest his voice.

You need to have your dad using protective equipment now an not later. He needs to use a cane or walker. His legs are just going to eventually give out an he can't afford with ALS to go threw a operation. Get safety rails on toilet and strong handrails on shower/bathtub. You got to take precautions and now.

Things can change in a second with ALS. My dad couldn't get round the clock in home care in our small town so he moved to a assistant living facility in Dallas near my siblings. Luckily, he was a veteran because the cost is astromical. You will need every resources of people you can find now to help you. Make arrangements now.

If you mother is at stage 4 she isn't going to be able to help your dad much longer. He'll be dead weight the more he get paralyzed. I'm so sorry. Don't mean to sound harsh. Just been through it an know the full hell your going to face.

Last edited by lgelb : 03-03-2019 at 12:35 AM Reason: paras
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