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Jonathanb

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Good evening, all.

My name is Jonathan, I am the 26 year old son, of someone whom was diagnosed, about 18 months ago. My Mother is 45. She seems to have good body, muscle control.

but her speech, and as well ability to speak, and swallow, are nearly gone. She is on a feeding tube.

She, and I are very depressed. (her with good reason I think) Im not sure how to cope, with her depression, she is sometimes considering ending her life.

is there anything others have done here to keep morale high in the home?
 

Al

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Hi Jonathan. I am sorry about your mom and know how difficult a diagnosis of ALS can be. I don't have bulbar symptoms but have some friends with them and they are harder to cope with than limb onset symptoms. Has she contacted the ALSA if in the states or ALS Society if she is in Canada? They can offer support and counselling or support groups depending on where you live.
Does she go to an ALS Clinic? They usually have chaplains there to offer support. Has her doctor prescribed any medication for depression? The caregivers and family quite often need medical support because of the severely depressing aspects of caring for someone with a terminal illness.
Sometimes people just need to to talk with someone that is going through the same thing as you are and can relate and understand. You have found a good place for that.
Ask any questions you need to and don't be embarrassed. We are all in the same boat.
AL.
 

Jonathanb

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Thanks AL,

we are in the Bay Area CA, near San Francisco.

shes, got a clinic, they are giving her some medication, that I have noticed when shes, on it. her speech is actually worse.

I do really wish she was part of a support group, even if just online, like this one.

she does have a computer. Im going to ask her to join us here, or, does anyone know of someplace, i could drive her, locally once a week or month or something
 

Al

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Hi again Jonathan. Go to alsa.org and look under In Your Community and see if there is a group or chapter in your area. I'm up in Canada and not too familiar with San Fran.
AL.
 

Beebe

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Hi Jonathon

Hi Jonathon, Welcome to the Forum. There are pals on the Forum from your area.,whom Im sure will respond as soon as they read your post. Is it an ALS Clinic your Mom is going to? They should help steer you in the right direction as far as support groups , counseling etc. If you feel your Mom is worse on the Meds. she's taking you should let the Dr. know. What is she taking? Do you have other family and friends , you need others. We are all in this together and we are here for you too. Hope I have helped a little. My Best to you and your Mom, Beebe
 

Jonathanb

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i will find out, what she is taking, and let you all know,

thank you so much.
 

CindyM

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Hi Jonathanb. Welcome to the forum. I am sorry about what is happening to your Mom and to you as well. You didn't mention any other family or friends nearby...Hopefully you are not alone with your Mom in this. Perhaps when you check into your local ALS chapter you will find some support for both of you. This disease affects the whole family so you are right to seek support right now. Regards, Cindy
 

Jonathanb

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well, I do have other family,

a 20 year old younger brother. (love him very much, but he keeps to himself,) as well, my mom has her boyfriend, and my father.

the group is a bit rag-tag, but nonetheless, it gets the job done.
 

CindyM

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I am so glad that you are not totally alone in this. You will all need support as your Mom's disease continues. Go ahead and ask anything that comes to mind, and don't forget the search feature on this forum. As you visit here you will begin to learm more about ALS than many doctors, since they only see a few patients in the course of a career and there are hundreds here. I suspect you will be a big help to your family when you start to share what you learn here.

PS: don't forget to have some fun for yourself once and awhile. You are young to have this burden but I suspect more than up to the challenge, as long as you take care of you, the caregiver! Cindy
 

Jonathanb

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Messages
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PALS
Country
US
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CA
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Berkeley
I do find time, for myself. Not much. but im happy with it.

What I need, the most help with, is the depression.

I have seen my mother crying, begging for it to be over. So sad, as she is only 45.

I think she has lost her will, and I want her to have SOMETHING to live for,

I know she has a friend, her kids, but I think something new, a reminder. a group a

book, I DONT KNOW! i need advice on how i can give her something to live for,

something to make want more while she can still move around.
 

mlb

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Hi Jonathan

Jonathan, I feel so sad for you. Your mother and yourself are immersed in the illness and cannot see past it - this is why you are both depressed. You said she is fine physically with good muscle control.

I don't know what to suggest except that Mike's website is a good place to start (quadbliss). There is still a lot she can achieve and once she has accepted her illness then she will be free to embrace and enjoy life and be thankful for the simple pleasures that it offers.

Good luck
Anna
 
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