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carolinep

New member
Joined
Feb 26, 2009
Messages
1
Reason
Loved one DX
Diagnosis
10/2006
Country
US
State
WI
City
Madison
My mom is 68 and was dignosed with ALS in October 2006. She is very bad now and I think very close to the end. I moved back from CA to WI to be with her, and although she has 24 hour care, I am here, being a caretaker, at her house, 6-8 hours a day. In addition I manage all of the household things, finances,and care for all of her animals (6 of them). I have gven up everything for her. I am 29 years old and gave up my entire established adult life to come here. Since I've been here things have been horrible, even outside of the progression of her disease. The winters have been so bad, worse than in the last 30 years, and I even flipped my car over and totalled it.

In any case, everything is coming to a head right now. She is terrible. She wears her bipap 24/7 and can barely speak. I have to lean over her and listen through her mask to hear her. She has an ERICA computer but it is finicky and takes a long time and she barely ever uses it. I read someone elses post too, about the frustration. It is almost as if she has forgotten she has this disease, becasue she speaks when I am far away, in another room, in the middle of something or whatever, and I need to stop everything and come over to her to hear her. She will ask me to do something for her, and while I'm in the middle of doing it, she will ask me for something else. I can't sit down for 10 seconds. And if I ask her a simple yes or no question, she hems and haws on, which she must somehow know is pointless because I can't understand more than 30% of it. Now, even when I first come in the door I am not even greeted, I am immediately asked for something.

She has been talking about picking a date to go off of her bipap now for 2 months. She keeps saying 2-3 weeks from now, but never gets anywhere with it. We are almost out of money, I am running on empty, and I don't know what to do. Of course I love my mother, so very much, but she is no longer my mother. She may not have dementia, but this disease has changed her mentally to where she doesn't even consider other people anymore. I feel like a slave. This is not what I wanted for my life, and I really hope that it isn't what my mother wanted either, for either of us. And I know she is scared of death, but I can't imagine what this quality of life could be like, and why holding on to it is so precious. Hell, my quality of life is terrible right now even.

I just really can't do this anymore. Nothing I do is right or good enough and she always wants something more. I just need this to be over. I never thought I would turn into the person who wished for someone, let alone, my own mother's death. But I do, every day. I just want to get on with my life. My health is suffering, I want to die myself.

I guess I just need to hear it from someone else going through it, that this is ok, someone other than my therapist, or grief counselor.
 

Bujy

Active member
Joined
Sep 22, 2007
Messages
33
Reason
Loved one DX
Diagnosis
Family
Country
CA
State
BC
City
Vancouver
I have to say that I'm just not sure how to respond.

I hope you find some help and can resolve issues before your dear mother passes away. Try and enjoy the time you have left with your Mom. Perhaps you can gain a new insight into life and appreciation for what she's going through.

Taking care of your Mom may just be too much for you. If this is the case, you should get help. Perhaps there's a care home or respite house that will be able to give her the tender care that she needs during this last part of her life.

I wish you and your Mom the best.

Bujy
 

BLPhill

Distinguished member
Joined
Oct 10, 2008
Messages
211
Reason
PALS
Diagnosis
09/2008
Country
US
State
WA
City
Tacoma
Dearest Bujy

Thank you for being such a sweetheart. :confused:
 

brooksea

Legendary member
Joined
Sep 27, 2006
Messages
5,171
Reason
Other
Country
HM
Caroline,

Although we "all" suffer from ALS when our loved ones receive the diagnosed, WE do not have the disease.

As I see my husband suffer with simple things that he could do with no effort before, I wish I could wave a wand and make all of this go away. But, I can't.

I am so very sorry your mother is suffering. Sometimes we need to put ourselves in the place of the one that can no longer speak or pick up a pen to express themselves. Conversation is vital, no matter it be vocal or written. We can't survive without it.

You are very young. I know this is a lot for you to handle.

Perhaps you need to contact the ALS Association or MDA to see if they have suggestions or counseling. Oh, I see you are in counseling.

Maybe you and your mother don't have a very good relationship. I would suggest you reconcile now before it's too late. I know you said you love her very much, but she can't move or speak or breathe.

You obviously need some help! Call Hospice or get respite care.
 

brendapals

Senior member
Joined
Jul 6, 2008
Messages
953
Reason
PALS
Diagnosis
06/2008
Country
US
State
any
City
any
caroline,
Please, please, call someone that you can talk to. The ALS Assn or MDA chapter in your mother's town, a local preacher, someone there that knows you...

Yes, ALS is a monster, and it seems like you could use someone to talk to. And perhaps a little break from your mother? With 24hr care for your mom, maybe you could get "out" for a few hrs. Sometimes just going outside and doing some deep breathing can help.

And try to remember, God won't give you more than you can handle, it may seem like it, but really He won't.

Take good care,
My prayers are with you,
brenda
 

lola64

Member
Joined
Oct 10, 2007
Messages
20
Diagnosis
06/2007
Country
CA
State
Newfoundland
City
St. John's
Hi Caroline-
Oh, honey, I'm with you. I'm 28 and pretty much feel the same way this week with my Dad this week! :) I don't know how to draw strength.. it comes and goes, and we just do what we have to do. But please don't feel guilty for thinking the things you are thinking: it isn't right or wrong to have these thoughts, I believe they are all a part of our coping and grieving process, the process we have to go through in our minds to deal with what we're all going through: I think, it seems like when our PALS are first diagnosed, we go through a huge shock phase, where it all seems to hit you at once; all the grief, disbelief.. but then as we go on, and live through it with them, the length of the ordeal seems to set in, take its wear on us, and mentally, it's draining.
I think the constant, dragged out coping stage wears us down and sometimes we don't even know it!
If you can, try to take a bit more time to yourself for a few days.. let hospice take care, step out, walk, breathe, read.. just BE with yourself a little more. Hell, have a big glass of wine;)
Just know you're not alone and if you need some support, just PM me!
 

Zaphoon

Extremely helpful member
Joined
Aug 2, 2008
Messages
2,855
Reason
DX UMND/PLS
Diagnosis
08/2011
Country
US
State
Missouri
City
Springfield
CarolineP,

I think you should leave and let someone else care for your mother. You've reached your end, at least for now.

As others have suggested, get in touch with the local ALSA chapter to see if they can help or have a direction to point you in for help. There are several service related organizations in communities that provide this sort of assistance free. High schools have a "Girl's Service Society", many churches have outreach programs for the sick and shut-in and service organizations like the Elks and others offer assistance.

You've obviously given very much and for that, a big "Thank You" is in order. By the way, it was selfless of you to give up what you had and relocate to be with your mother. No one can fully prepare themselves for what ALS can do to their loved one.

I wish you the best. Please get some help, get some rest.

Zaphoon
 

mndireland

Distinguished member
Joined
May 17, 2008
Messages
123
Reason
Loved one DX
Diagnosis
10/2007
Country
IE
State
Ireland
City
Dublin
Hi Caroline, Like Lola I am in the same boat as you. I can say that I have felt the way you feel, but its not a constant feeling although it can come and stay for days or weeks it does pass. Im 30 now, engaged to be married, which I have had to put off, 7 months pregnant, and was supposed to be living with my fiance now married having this baby.

I did feel hard done by, as my life changed and my mum didnt seem to care. Still sometimes she doesnt. I never said it on this site as everybody mainly says nice things, but your feelings are normal, and I would imagine a lot of cals have them.
My mum would say to me, I looked after you for years, its payback time! She would say dont ever put me in a home. (I wouldnt anyway) WHile im dressing her, she is giving out about the clothes, the way they have been pressed or folded, everytime I put a meal infront of her there is something wrong with it, she didnt want it mashed and ive just ruined her dinner, she doesnt like it this way or that. Luckily my mam and I were made from the same cloth, and we are both as cheeky as each other. We wear our hearts on our sleaves as they say, I would say to her (jokingly of course) It wont be that disease that'll kill you it'll be me if you keep it up. I could spend all day looking after her, cooking, cleaning, running around, and my sister could come in and make a cup of tea and she would say thanks love, that used to get to me! I felt like she didnt care what was happening to me, and she was being selfish. Then other times, I would feel so guilty as I would go to bed crying because I couldnt do what I wanted to do or live my life, and I would feel sorry for myself, then I would feel guilt for feeling this as she is dying, I could have 60years left, how selfish am I! Its a roller coaster ride.

I did speak to my mum about it, not outstraight of course, but in ways like well if I wasnt here who would do it, you should be glad of me, and keep it up shouting at me and I wont do it, ill go back to work and get a nurse. I know it sounds cruel but she started to see it. I would point it out if she thanks my sister, and say oh she gets a thanks wheres mine? Now she does say to me, Id have to thank you all day everyday for all you do for me, Dont worry ill be good to you in the will, and we have a laugh about that!

So what im saying is, sometimes they can seem a little selfish, but arent we all selfish at some point? And how scary must it be to be lying down at night, difficulty breathing, not being able to shout for help, or get out of bed and call out, and to think you might not wake up in the morning. I know your life might seem to revolve around your mum right now, but one day she wont be here, and I just think, Oh My GOd what are my days going to be like then?
I know I went on a bit, but Im just trying to say these feelings you have are normal, but I hope they wont last a long time, and you cherish some of the moments you share

Take care
 

lola64

Member
Joined
Oct 10, 2007
Messages
20
Diagnosis
06/2007
Country
CA
State
Newfoundland
City
St. John's
thank you ireland...
sooo good to hear you put in words how I think we all must be feeling, but somehow are afraid to say! It's so true, you hit the nail on the head when you said it feels like you've made decisions, sacrifices, that you've been somehow hard done by, that you've had to put your life on hold when it seems like everyone elses (including siblings!) still goes on as planned!
My brothers are pretty unavailable and going on about their own lives, and in alot of ways I feel cheated on mine! (Even though, it was my decision to move back to my hometown to spend time with Dad for these years.. only now starting to realize how long these years go on but how fast they go all at once!) Guess it's decisions we made for a reason, and hopefully the reasons unveil themselves and are for the best. I believe there's some good karma in store for all of us eventually (especially our Pals).
So glad you started this thread, Caroline.. it's good to see there's a few more ladies out there about my age feeling the same way about things right now. Thought I was a rare (head) case:p lol.
Have a good one...
 

grantst44

Member
Joined
Oct 1, 2008
Messages
23
Reason
Loved one DX
Country
US
State
VA
City
Chesapeake
It's good for you to vent

I have my own description of ALS: It's a fast progressive disease but it's a slow death. Call a hospice center or ALS association who can find you help. It might be good to talk to a social worker and they would have ideas to help and hook you up with good information for help. You really need a break and you have a right to take one.
 
Joined
Mar 5, 2009
Messages
10
Reason
PALS
Diagnosis
00/2007
Country
US
State
texas
City
freeport
hi caroline,
my names scarlett. im 16 and i have als.
i understand (well not completly) how you feel, but because of my condition i've came to understand a lot (especially for some one my age)
everything happens for a reason and if we're handed it then we can handle it. just be patient and try to enjoy the time you have left with your mom. i know it must be really hard but be happy she's here with you now because tomorrow is never promised. im so sorry you've had to put your life on hold but i hope you realize that you dont really mean what you're say you're just frusterated at this point.
maybe you should get away for a day or two, but please dont give up on helping your mom.

you and your family will be in my prayers.
-scarlett
 

cherylmascho

New member
Joined
Mar 5, 2009
Messages
1
Reason
CALS
Diagnosis
12/2006
Country
US
State
OK
City
chandler
Caroline

I lost my husband to ALS only a week ago today. I was the primary caregiver to him for the duration of his disease - nearly 4 years. It sounds as if you are frustrated and/or exhausted, which is to be expected. I, as you, also experienced periods of frustration and weariness. Please know that it will end, and when it does, it will seem like it wasn't long at all. Although I experienced some sort of relief at Mark's passing, I almost immediately began to miss the caregiving. And I will say that I would do it again in a heartbeat because there is great reward in seeing someone you love finish the battle. Hang in there, Caroline. Your dear mother needs you. I will be praying for you.

Cheryl in Oklahoma
 

brendapals

Senior member
Joined
Jul 6, 2008
Messages
953
Reason
PALS
Diagnosis
06/2008
Country
US
State
any
City
any
Cheryl,
My sincere sympathy to you and your family,
brenda
 

stgeorge

New member
Joined
Jan 29, 2009
Messages
6
Reason
CALS
Diagnosis
10/2007
Country
US
State
ga
City
sandersville
I think it's ok. Sometimes i feel same way. My husband was diagnosed oct 07, sometimes i feel like i cannot do this anymore and work. But we always make it another second, minute, hour, and day. I guess we just need to hang in there for their sake. It is very hard.
 
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