21 year old caregiver

Josephg

New member
Joined
Feb 14, 2020
Messages
3
Reason
CALS
Diagnosis
12/2019
Country
US
State
NJ
City
North Arlington
Hi all,

Im Joe. Im 21. My dad has a very aggressive form of ALS. He was officially diagnosed this past December 2019. I saw him back in August/September and he was perfect, walking, talking, driving etc etc. Fast forward 3 months to his diagnosis he can not walk, barely can talk, can not move on his own, wipe himself, or do pretty much anything. Doctors say they never see ALS progress so fast it is like he had it for years.

I lost my mom last year to Cancer. She was 55. Now im going to lose my dad he is 51. I am 21 with no other family members besides my girlfriend who is a great help she is amazing. We plan on getting married as soon as we graduate college this may.

So as you can imagine its so hard to care for him given my age as well as im in school i work etc have little money etc etc.

Lets get into my question.

Right now he cant walk at all. Not a step. He cant use his hands other than a tiny grip on a sandwhich (yes he can still eat thankfully but slowly getting worse) he cant clean himself so i have to or my girlfriend has to clean him. He calls me every 5 mins for help I havent had a full nights rest in over 2 weeks since I left my apartment where me and my girlfriend lived and got a new 2 bedroom to give dad 24/7 care. But He doesnt let me sleep and i cant live like this. We have an aid 5 days a week and its like $4500 a month. Crazy expensive. He is so demanding that i never get a chance to sit and take a breather. My body is sore. My shoulders my back my everything from lifitng him and moving him to get comfortable EVERY 15 MINS. He has to pee every 10 MINS. Its so much work and i cant do it now at the stage he is in..... now this really gets to the point of my question...

Him being where he is at now is SO HARD. Its only going to get worse.... how in the world am i supposed to do this when he gets to a point of 0 speech, 0 movement, 0 abilities basically paralyzed. If i can barely do it now how will i be able to then? I just dont know. Im so stressed so achy and so TIRED. Please help or someone tell me about what they experienced with their family memeber with ALS i want to hear stories to learn more and what to expect.

Thank you god bless
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,689
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
Dear Joseph,
I'm so sorry you lost your mom and are now losing your dad. You are a brave young man and your girlfriend is wonderful to help.

The peeing issue can be helped with the use of a condom catheter. He does need proper hydration so using a condom catheter should take some of the work out of jumping up so frequently.

I think it's time you called hospice to find out how they can help.

Addressing the financial aspects of this disease means you need to have control over your dad's finances and, should he have a life insurance policy, you might want to consider early distribution to help with the care. The care should not fall on you and your girlfriend to such an extend that it makes you sick.

You can also call your local ALSA chapter because some chapters are offering in-home assistance for cleaning, shopping, etc.

Of course, we're here to help.
 

Nuts

Forum Supporter
Extremely helpful member
Joined
Feb 23, 2014
Messages
2,534
Reason
Lost a loved one
Diagnosis
01/2014
Country
US
State
NC
City
Littleton
Hi Joe, and WOW. I'm so sorry that you've been blasted like this. I agree completely with Kim--get Hospice involved now. Is your dad a veteran, by any chance. I ask because there is more help from the VA if he is. If not, you definitely need to get help/advice through a local organization such as ALSA. I'm so very, very sorry.
 

Nuts

Forum Supporter
Extremely helpful member
Joined
Feb 23, 2014
Messages
2,534
Reason
Lost a loved one
Diagnosis
01/2014
Country
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State
NC
City
Littleton
Joe, I have to add more. You asked for information--you can read through old threads here and get a wealth of information. Id did that for quite awhile before I started posting, but my husband's progression was MUCH slower than your dad's is. Rather than people retelling their stories, do some reading and then ask more specific questions. This disease is, quite frankly, brutal. You already know this. You will get a lot of support and information here, but I don't think you have the time I had to sort through information and prepare myself. Is your dad seen at an ALS clinic? They have social workers who can answer many of these questions based on your own situation, and can offer local solutions. Some things that might keep him more comfortable are an adjustable bed and a low air loss, alternating air mattress. Imagine trying to not move at all for even an hour. No shifting to relieve pressure... This will get harder on both of you. A bed that moves him slightly (you can program it) will help with comfort and help prevent bed sores. You found the right place for information and support.
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
8,157
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Hi, Joe, very sorry to hear about your dad. Do you have a Hoyer lift? You can't keep lifting him yourself. Your ALSA chapter can probably help you get a loaner.

Totally agree peeing every few minutes is not normal and a catheter should help, along with looking for possible food triggers like spices, and keeping up hydration (frequent urgency can relate to incomplete emptying and dehydration). Has he been checked for a bladder infection?

Is he going to consider a feeding tube?

Does he have a hospital bed? That would come before the kind of mattress already suggested, to help him sleep for longer in comfort. He needs sleep as much as much as you do.

Does he have a BiPAP? If he's progressed quickly, his breathing may be keeping him from staying asleep esp. if he's sleeping flat.

That is enough questions...I agree that his clinic should be able to guide you in some of the equipment issues, but we are always here, and no question is too large or small.

Best,
Laurie
 

vltsra

Distinguished member
Joined
Nov 12, 2015
Messages
392
Reason
CALS
Diagnosis
11/2015
Country
US
State
CA
City
San Diego
Dear Joe, I'm sorry to welcome you here. My husband is a very slow progresser but had a drop off in function last March that went very quickly. It's really hard when things progress quickly because just when you deal with one problem there is another one to deal with.

I would absolutely encourage you to call your local ALS Association right away. They have been invaluable and helped me with loaner equipment and also finding caregiving help. I agree it is expensive; if your dad is a veteran I think they might pay for caregiving support. At any rate you need a hoyer lift - we just got one a month ago and it is easy to use and so much better for me as my husband is much larger than I am. FYI my husband can't clean himself either so I am doing it.

With regard to the urination, is your dad using BIPAP? Before my husband went on BIPAP support he had a similar issue. I suspect it was CO2 buildup. He had to pee all the time and I couldn't get the urinal in place fast enough. After he started using the BIPAP things got better. Also I agree with Laurie that BIPAP should help him with sleeping. You might try a wedge pillow to keep him more upright if you don't have a hospital bed yet.

I am sorry you lost your mom and now are going through this with your dad. God bless you and your girlfriend.

V
 

ARCG

Distinguished member
Joined
Oct 12, 2016
Messages
142
Reason
CALS
Diagnosis
1/2015
Country
US
State
TX
City
Houston
Consider calling hospice. They can get you a Hoyer lift, also have aides who will come out and give him a shower, etc. plus they can advice you on solutions for his need to urinate so much, as well as other issues that come along. They offer respite, sometimes at their care facility, so you can get a break for 5 days or so. My pals won’t go to respite, but your dad may agree. Their team visits you rather than you having to take your dad to an exhausting clinic visit. They have a social worker that can help you find support. If he can still transfer to a commode chair, consider installing a bidet to his toilet, they work great.
 

diagnosed2016

Distinguished member
Joined
Apr 30, 2016
Messages
189
Reason
Lost a loved one
Diagnosis
07/2016
Country
US
State
CA
City
California
First off, Joe, I’m sorry about your Dad, and the loss of your Mom. As to your question as to how you will be able to handle it as it gets harder- I can tell you, you’ll just do it. You are already doing so much, and I know its overwhelming, but you’ll get through it.
I wonder if your Dad maybe needs some anti anxiety meds? I know for my PALS, as his abilities decreased, he got panicky, and his requests for me would increase as well.
I had a hard time finding resources for help, but reaching out to your local ALS chapter might help. Also, your Dads insurance provider will also have a social worker (or they can request a visit with a medical social worker). who might be able to point to some resources. If there aren’t any therapies that need to be continued, hospice might offer you some help.
 

Josephg

New member
Joined
Feb 14, 2020
Messages
3
Reason
CALS
Diagnosis
12/2019
Country
US
State
NJ
City
North Arlington
Hello All,

Thanks for the replys.

My dad is not a veteran.
He is on anti-anxiety meds.
He refuses to go into a home.
He refuses to use the in home “ventilator”
ALSA has been helping... kinda...
We cant get him an air bed they declined it.
He wants someone with him 24/7 SAME ROOM not even same apartment. If i go to bathroom he starts freaking out and telling me how bad i treat him. I just dont know what to do I noticed today for first time during his sleep he wakes up out of breathe.. First time this has happened.
 

Josephg

New member
Joined
Feb 14, 2020
Messages
3
Reason
CALS
Diagnosis
12/2019
Country
US
State
NJ
City
North Arlington
Hello All,

Thanks for the replys.

My dad is not a veteran.
He is on anti-anxiety meds.
He refuses to go into a home.
He refuses to use the in home “ventilator”
ALSA has been helping... kinda...
We cant get him an air bed they declined it.
He wants someone with him 24/7 SAME ROOM not even same apartment. If i go to bathroom he starts freaking out and telling me how bad i treat him. I just dont know what to do I noticed today for first time during his sleep he wakes up out of breathe.. First time this has happened.
Also he cant go on Hospice because he doesnt have medicare yet and we dont know if he will ever have medicare they are saying he probably will be denied
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
8,437
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
I am so very sorry.

does he have insurance at all? most if not all insurances cover hospice you don’t have to have Medicare.

if he has a diagnosis of ALS SSDI/Medicare approval should be automatic and happen after 5 months of not working due to ALS unless he does not have enough recent work credits in which case no he won’t get it.

I am very sorry about how you are being treated. Anxiety and depression are not uncommon but if this behavior is a change and out of character has FTD been discussed? It is a known comorbidity. Knowing it is part of the issue won’t change his actions but might make it a little easier for you knowing if the disease talking .

who declined the airbed?
 

ARCG

Distinguished member
Joined
Oct 12, 2016
Messages
142
Reason
CALS
Diagnosis
1/2015
Country
US
State
TX
City
Houston
I am so sorry you are going through this. He should be eligible Medicare. Hospice will most likely do a complimentary visit and may be able to walk you through the procedure to get him on Medicare. Medicare will cover hospice. Do you have an aunt or uncle who can talk with some of the support groups with you, even if they can’t help with the day to day care? Do you belong to a church? It’s been my experience they are helpful in finding support in the community. Even if you don’t belong, sometimes there is a minister at a local church who is assigned to helping folks with serious illnesses and they may be able to point you in the direction of resources that want to help.
 

MarieLaure

Forum Supporter
Distinguished member
Joined
May 16, 2018
Messages
242
Reason
Loved one DX
Diagnosis
10/2015
Country
FR
State
Ile de France
City
mortcerf
Joseph I have no interesting idea to help you out of this situation, yet I am sure there is some help somewhere that can relieve you and take good care of your dad. Sending good vibes you find it soon. It is a good you talk about it, the story is likely to reach the right ear
 

Doglady

Distinguished member
Joined
Aug 6, 2018
Messages
197
Reason
PALS
Diagnosis
04/2018
Country
US
State
MN
City
Minneapolis
Joseph,
Your dad is being seen at an ALS clinic with a multiple disciplinary team at each visit? There should be a social worker in that team who can be very helpfully with navigating all these problems. Best wishes.
 
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