Need help from caregiver for ALS

Status
Not open for further replies.

MistyHall

Active member
Joined
Jul 26, 2014
Messages
39
Reason
Loved one DX
Diagnosis
09/2013
Country
US
State
Virginia
City
Huddleston
Hello, I'm Melissa,
My mom Holly Farrell has been diagnose with ALS. And I've been sad and upset, cause I have no idea what to do. I need help on what I need to do. Its better then getting a attitude with her. I am always stressed out cause I don't know how to handle it. Please help me someone. Thankyou so much
 
Please any caregivers out there. Please help me understand this.
I am only 22 years old. And its really really killing me. Seeing my mom go down like this
 
mom... has been diagnose with ALS.
And I've been sad and upset, cause I have no idea what to do.
I am always stressed out cause I don't know how to handle it.

Take a deep breathe and realize that it's quite natural for a 22 year old to be inexperienced in these things. Are you mom's primary caretaker? How old is she and does she have a husband?

How far along is she? It matters a lot because the things you need to do vary greatly depending upon her current symptoms. Tell us a little more about your situation.

Nikki, could you move this thread so she can get more visibility, please?
 
Misty, I've read your previous posts and I've got to say that you're doing a great job as a daughter helping your mom.

Something I've noticed is that you're not accepting the situation. People with ALS go downhill and then they die. Has your mom made any preparations for her final wishes: Will, Advanced Medical Directives, Burial?

Did you contact your local ALSA?
 
Misty, I'm so sorry you are in this situation. I found being my husbands carer so hard, and I often wondered how I was going to make it.

These are perfectly normal and valid feelings.

I found it very useful to see a counsellor regularly and I took anti depressants also which I can only describe as they stopped me feeling like I was just screaming inside. I was still sad, I still felt all the emotions, but I was able to stay on top of them enough to care for my husband well.

As Mike said, acceptance of what is happening is very important. Your mum, I'm so sorry to say, is only going to continue to get worse, then it is going to take her. I wish I could tell you how to get to acceptance but I can't, but I can tell you that I had to do that. In some ways you never quite accept it, I still am in shock at times to realise it all happened and that my Chris is gone.

Please do answer the questions Mike asked, we can help you better the more you talk to us. Talking to other carers here was also an incredibly important thing that helped me, and now I'm here to try and help others.
 
Misty, so sorry for your mom and for you as well. This is going to be a hard journey for both of you. Know that you are never alone as we will all be here for you - holding your hand.

Debbie
 
She cant walk use her hands. To a point she cant talk. And its hard to understand her now.
Plus she has a feeding tube in her now.
But its hurts that I cant understand her. And I get mad and get a attitude. Cause I dont know what she wants. And she alwayz tells me to pack my stuff and leave. When I have no where to go. And she needs to understand that she has a computer to help her talk and she dont you it much. Cause it is messing up. And the girl that set it up keeps telling us to call technical support.
 
...But its hurts that I cant understand her. And I get mad and get a attitude. Cause I dont know what she wants. And she alwayz tells me to pack my stuff and leave. When I have no where to go....

You need to make a choice who is going to get their needs met: you or her. If you insist on being "right" you will ruin the relationship.

The best gift you can give your mom is to be there for her. Don't insist on anything, just be in the room.

The worst thing ALS takes away is choice. Imagine being her age and unable to choose to for yourself. She can't even choose to walk. So give her her choices and say yes to her every request. Get her whatever she wants, even if you disagree. That's one very difficult thing to do, but it helps the person with ALS.
 
I've been doing what I can. And I don't have time for me anymore. I'm always in the house, I lost all my friends cause I cant get out.
I try to tell they I cant and some don't listen.
I just need time for me. Also, but cant. I'm always in the house....
 
Misty,

I am sorry that you and your mom are in this situation. While I am older than you I understand where you are coming from. After dads diagnosis he pressed the doctor for a time line which was estimated at about 4 months with his rate of progression at the time. I prepared myself for a relatively short run and made myself completely available. I am very thankful and glad that dad is still with us, but as he has progressed and more time has passed and more and more of the load has shifted to me I have found it harder and harder to deal with but I have done it. This is a redicuously hard disease for both the patient and the caregivers/family. I completely understand your frustration and have felt/feel it myself, however you have to think about your mom as well and the frustration she is feeling. A once independent person that could go and do and talk and eat now can't any longer. You have to try your best to be patient and loving with her and help her as best you can. When you feel yourself getting frustrated and on the verge of losing your cool walk away for a minute and regroup. There will also be times no matter how hard you try not to that you will say things you don't really mean and react ways that can be hurtful. When this happens give things time to settle down and talk to her and tell her you love her and you are sorry and that it is hard on you as well as her. I have finally given and talked to my doctor and been put on a medicine to help me get back in control of my emtions. I felt like I stayed on a roller coaster of emotions. I was happy, sad, mad, frustrated, and hurting. They were all over the map and getting harder to control. You do have to some how find a way to get away for a break here and there or you will feel trapped. Even just getting away for an hour or so will make a huge difference. As far as your "friends", (this probably isn't what you want to hear) if they can't stand by you through these difficult times and support you and be there for you they aren't real friends. I have been blessed with some great friends to stand by side and offer help or just listen or hug me and let me know it will be okay. I don't know if this will help you any but there is a wonderful group of people here that will listen to you as well as offer great advice. Please stay in touch and let us all try to help you.
 
Misty,

Do you have any help from anyone at all? Her husband/partner, Hospice, or a sitter? If not maybe that is something ya'll can look into. Praying for you and your mom and hoping you can find peace! This is the hardest thing I have ever had to deal with in my life. You are at a difficult age to be in this psoition for sure. I do understand though. I work with dad in the morning and on my lunch break from work and after work and on and off all day every weekend. Since his diagnosis I have moved back home so as to be readily available to help, lost a good relationship, because she felt she was interferring with my time to help dad, lost some what I thought were friends, and commited the majority of my to his care but in the end it was 100% the right thing to do and I can rest easy knowing I did all I could and the best way I knew how. When this all done I will pick and resume my life but I will be a different person for sure. It isn't your mom you are frustrated and mad at, it is this horrible disease.

Prayers,
Bryan
 
Sorry, I see it said Melissa now.
 
What exactly do you need to know about or have questions about? ALS caregiving is a very big topic with all involved. If you give questions with as much detail as possible you will get some great help.
 
Misty, you need respite care.

I believe Medicare will pay for that. Find "respite care" in your area and ask them.

They will watch after mom for a few days while you get a break.
 
We have a aid here from 9-5. Moms boyfriend works from 7-4. Me and my uncle are always here. He is limited on help cause of his stroke.
my grandma comes here and is always on me about stuff.
I can't go to the doctor and get pills for me. No medicine.
I need to know how to go about dealing with it, without get mad or anything with her. Cause I am always mad. Dont get enough sleep anymore.
I have a fiancé that says he is here for me. But he is pushing away from me. Cause of my attitude. So now I am losing alot of love ones. Cause of that. And I can't control it myself. Plus when others arent here. They dont see much stress. Other then people that seen it or gone through it.
 
Status
Not open for further replies.
Back
Top