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My Dad was diagnosed a year ago and I’m looking for some support

Strombe

New member
Joined
Feb 23, 2019
Messages
0
Reason
Loved one DX
Diagnosis
02/2018
Country
US
State
SC
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’m 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’s 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’s so hard for them to lean on each other when they need emotional support now more than ever.

I’m 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’ve seen it happen with my own family. There is so much that I took for granted.

I’m just so scared. Looking for some support and any sense of hope from someone who has been through this because I don’t know how I’m going to be able to deal with this.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,207
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
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
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,189
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
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.
 

Strombe

New member
Joined
Feb 23, 2019
Messages
0
Reason
Loved one DX
Diagnosis
02/2018
Country
US
State
SC
Thank you for your response. It’s 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’t 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’t 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’m 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.
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,189
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
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.
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,237
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
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
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
1,771
Reason
PALS
Diagnosis
07/2017
Country
US
State
Oregon
I’m sorry to have to welcome you here Strombe. I don’t have too much to add except that we’re here for venting and support. Hugs to you.
 

ThisPresentMoment

Distinguished member
Joined
May 30, 2018
Messages
123
Reason
Lost a loved one
Diagnosis
12/2017
Country
US
State
MN
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.
 

Strombe

New member
Joined
Feb 23, 2019
Messages
0
Reason
Loved one DX
Diagnosis
02/2018
Country
US
State
SC
Thank you so much everyone for the helpful responses. We will definitely look into the local ALS chapter.
 

skipper66

Very helpful member
Joined
May 20, 2012
Messages
1,478
Reason
Lost a loved one
Country
US
State
ILLINOIS
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 a moderator:

beauty4everyone

Distinguished member
Joined
Jul 5, 2018
Messages
130
Reason
PALS
Diagnosis
04/2018
Country
US
State
Ville
Dear Strombe, so very sorry you need to be here. Our family is new to ALS, too. Since it's such an unpredictable disorder, we are preparing for the future as much as we can now.

That includes: visiting the ALS Certified Clinic - asking questions; their getting me a wheel chair early, with plans for a hospital bed and Hoyer lift pending; making lists of financial information, such as investments, savings, checking, etc.; making sure there's a current will; filling out all the necessary end-of-life directives, etc., etc. Although it's very difficult, when everyone feels comfortable about discussing it, early funeral decisions can bring comfort later on.

Once the initial shock was manageable, which took several months, we proceeded with the above. Everyone has differing needs and priorities. There isn't just "one way".

It sounds as if there are lots of helpers and a schedule is being put in place. That helps a lot. Once a routine is established, and you have a list of others who could step in if needed, can create a greater peace of mind for all.

Patients and Caregivers do the best they can under changing and unpredictable circumstances. Then have to take and live each day as it comes. It sounds as if you are doing that the best you can.

Other than the above: giving and receiving hugs, pats, kind words; reassuring each other that you all will get through this together, and being loved, is all that's left to do.

May each day bring you increased strength and calmness of spirit as you move forward.

May blessings abound. B
 

MarieLaure

Forum Supporter
Distinguished member
Joined
May 16, 2018
Messages
190
Reason
Loved one DX
Diagnosis
10/2015
Country
FR
State
Ile de France
Hi Strombe.
You found the right place to talk to people who know.
My dad was also limb onset and it started with his hands and then arms. He plateaued there for quite a while. During which time his wife - my beloved and beloving second mother- was going trough a very hard time health wise. They were both worrying for each other.
Now she died last year and he is completely paralyzed.
All the above advice make a lot of sense in my opinion. What helped them enjoy as much time as possible together was getting help. To eat, get dressed and all.
Really if they don’t have to use energy on stuff they can get helped with, they can enjoy moments together.
Also don’t feel guilty: no one is responsible for the situation and your wellbeing is part of theirs.
Just a little trick now : if your dad feels ok with it, you can suggest his wearing kilts. It helped my dad stay autonomous and smart for about two years.
And get the gear in advance too.
And when you feel ready for it, discuss their wishes with them.
At the end of the day what helps most is love.
Ask any question any time and take care of yourself as well.
Hugs
 

Ken15

Member
Joined
Jan 9, 2018
Messages
19
Reason
CALS
Diagnosis
09/2017
Country
US
State
South Carolina
My PALS also has limb onset and conservation of energy is most critical. Thus, in addition to the excellent advice above, suggest the following to help reduce energy expenditure associated with everyday tasks:

Set of utensils with fat handles, universal cuff, raised toilet seat with handles, walker, toilet seat bidet, shower chair, and transport wheelchair (let Medicare pay for a power wheelchair at a later date),

These items can be purchased, borrowed (local ALS chapter closet) or acquired at a local thrift store.

Lastly, you've come to the right place for support and help.

Ken
 

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ReginaS

Forum Supporter
Active member
Joined
Nov 20, 2018
Messages
86
Reason
CALS
Diagnosis
02/2018
Country
US
State
--
Hi Strombe, welcome! My pALS (=partner) was also diagnosed 2/2018. Limb onset, but bulbar is affected too. I have found so much support here and am still learning a lot.
The people here are great and amazing.
 
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