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GigiDi

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Nov 23, 2008
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Loved one DX
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US
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new england
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Newport, Philadelphia
hi there, i'm new at this posting thing but not so new to als. some background: i'm 24, and my mom (54) was diagnosed'ed with ALS in the summer of 2004. i live in RI while my my parents & 2 younger siblings live at home in NJ. but i've moved home to be there for the final days. i've heard people say its a miracle that she has made it this long... she hasn't had her speech for over a year or two now, and lost usage of her arms & legs even before that. she's used a dynavox rather skillfully but now is really unable to control it. i'd like to say it's been a long battle, but with a disease like ALS it seems more like a long surrender. so there's that.

i've noticed that the priest is over almost every other day now, her friends are stopping by more frequently also. the woman who i suppose manages her hospice brought over the "comfort pak" just last evening. we've had a few chats. everyone is eagerly planning for thanksgiving, but realistically she may not even make it till then. she uses the bipap almost 24/7, and has been running a temperature. she is so weak and skeletal... lost almost all appetite & not much desire to stay awake. i've done some research, and i'm afraid that the dying process is starting. :cry: so there's that.

unfortunately i can barely come out of my room to spend time with her. i feel like crying ALL of the time. our family dog even comes and jumps up on the bed, curls up next to me, and whines and whines. i don't want her to see me crying. i cry all night also i barely get any sleep... my sweatshirt sleeves are both soaked through because i dont want to wet my laptop keyboard... i've been reading the forums here for a while and everyone seems so calm and at peace with everything. truth is, i am not. especially around the holidays, which were always an amazing time of the year for us, i am angry and jealous and sad... i don't like going out because i see happy families, and people shopping for their loved ones. i don't like seeing commercials that boast "gifts for mom"... etc... just constantly reminded about what i've lost.

i've had plenty of time to prepare myself for the inevidable... just wish i knew exactly how many days/hours we have left... i will never for a second let her see me cry while she's still with us. when she goes she needs to know that i am okay and she has my permission to leave... i don't want her last moments with me in hysterics... but at the same time i just want to have that cathartic moment when i let it all out. i'm very envious of everyone who is all so diplomatic and composed. any advice? :confused:
 

kylisa

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I have no advice. I am in the same situation you are. My mother no longer talks, eats only through a peg, has to be helped out of bed to a bedside potty, and is now having smothering spells. I pray she doesn't suffer too bad for too long. She woke my father this morning because she was crying because she couldn't move. It has been a horribly quick past few months of progression. I pray she will pass in her sleep. This is something no one should ever have to deal with. However, there are no "good" terminal illnesses.
 

Icanmanz

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Jul 14, 2007
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Gigi, thanks for sharing with us. I am keeping you, your mom, and family in my prayers. As I read your post, I relived every moment that I had gone through with my son. It is only natural to feel the way you do. We are never ready to watch our loved ones depart, but when God makes the call, He gives us strength and comfort. My story is a long one, too. I lost my son, then 37 years old to Als. It will be 2 years on June 3, 2009. Als is quite an experience. It is a bad disease, but quite an experience. One thing I learned from this, it makes such a strong person out of you.

I will be praying for your mom's departure to be a comfortable one. Stick close to her, and keep talking to her even if she does not respond, because they are always able to hear you. God bless you all, and keep us posted.

Irma
 

califsand

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Gigi,

I was recently in your position and it was hell on earth. It took all of my strength to maintain my composure and when it came time to let it out, it was actually hard for me. You are doing your best and if you need to cry, do it. It may help to get a prescription to help you sleep right now, or a mild sedative for those moments where the world feels like it is crashing in (I have some of those now and the two times I have taken them I was glad to have them)... it's so hard to watch ALS do this to someone you love, with no ability to predict when it will end so you cannot make plans. It feels like you're holding your breath a lot of the time, or under water, or suspended in limbo. This may be one of the hardest things you will go through in your life and nothing we can say can change that. What got me through was taking it all one day, one moment, at a time. I couldn't plan ahead for anything towards the end because I knew that when I lost my Dad, all plans would unravel and honestly, I knew I would not have it in me to make the calls to cancel... I needed the freedom to focus on only what had to be done, nothing else.

If you can get something to help you sleep, you'll probably feel a bit better. Yes, I'm a huge advocate for sleep aids, without them I would have lost it a long time ago because without sleep, I'm useless and fall into serious depression. Start there if you can, and do the things that comfort you. If it's computer, sleep, crying, writing, singing, hugging family and friends, hugging a stuffed animal (I have a stuffed monkey that I really latched onto a couple of months ago) whatever... find comforts and hang on tight to them. You will get through this, it will be hard, no denying that, but if you can find small comforts, it will help you. None of us handle these things the same way, there are no rules! If you read through some of our posts, you'll see that many of us have melted down (I know I have on here) and have vented such an array of feelings here. You might feel really alone right now but you're not, lots of us here know how you feel and we care deeply about what you and your family are going through.

Sandy
 

Zaphoon

Extremely helpful member
Joined
Aug 2, 2008
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DX UMND/PLS
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08/2011
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Gigi,

I've been through the death of both of my parents and there is simply no way to prepare for what you are going through. The feelings and emotions you are experiencing are very normal and I'm very sorry your mother has been suffering so much these past years.

At some point, very soon, I would suggest you do your best to be at your mother's side. If you can't stop your tears, don't feel bad; just visit with your mother by her side as the opportunity may not be there much longer. This is a very difficult time for you, I know but please go and be with your mom while you still can. You will not regret it.

Zaphoon
 

GigiDi

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Nov 23, 2008
Messages
16
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Loved one DX
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US
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new england
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Newport, Philadelphia
thank you for your replies ;-) my mom's cousin (my "aunt") came by today with food for our fam..... people we know have been MORE than generous these past years bringing food several times a week! anyway, my aunt told me that when people stop eating their food, it can take two weeks for them to finally succumb.... (!?!?!) really? a while back, my mom opted not to have a feeding tube and now it's waaaay too late to install one... i believe that ship has sailed. my dad spoon feeds her bits of pureed stuff and/or yogurt. i'm feeling much better today than i was yesterday, however i'm getting scared that she will pass too closely to the time i have to go away for work.

i've been out of work nearly 2 months now for this, and on dec. 10th i am flying out to san diego and i'll be in cabo san lucas until january 4th. after that, i have to go to key west for a while in January so i'll be scarce. i've been reading posts where relatives were sure their loved one would pass any minute, and it took way longer. ::sigh:: i just want to go away knowing that she is no longer suffering, and not hanging on waiting for me to come back. it all makes me nervous.
 

brendapals

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06/2008
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any
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any
Gigi-
My heart goes out to you-seems like you have a full plate! Please take time to rest when you can, take time for yourself some too. God has a plan for all of us, and only He knows when He's ready for us.
You will remain in my prayers,
brenda
 

califsand

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01/2004
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Gigi,

People can hang in there from 2 weeks to 2 months without food. My father passed away Nov 12 after being complete without food for about 5 1/2 weeks. It really varies from person to person, depending on how strong they are physically and mentally. I kept wishing that I could know... but you don't, not until the very end and there is no mistaking it at that point. At least with my Dad there wasn't.

Your mom may actually wait for you to leave, and then let go. I have heard so many stories lately about that happening, where parents didn't want their children to witness their passing and waited. Maybe they think it is better for us? I was there during lots of crisis with my Dad but my presence calmed him. Eventually I began to think he wasn't calmed by me, he was refusing to pass away while I was witness. We can never know but so many people share that story... and maybe you will too.

Take care,

Sandy
 

JasonMc

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Aug 7, 2008
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PA
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Pittsburgh
Gigi:

What DynaVox does your mom have? Also, what access method was she using (direct select, switch control, headmouse, etc)? It is common with ALS to have to change access methods throughout the course of the disease. You may wish to contact DynaVox (I am from DynaVox) at http://www.dynavoxtech.com to see what can be done to continue access to her communication device.

Jason
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
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PALS
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10/2003
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On
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NW of Toronto
While I'm sure Gigi appreciates your thoughts Jason, her post was about coping with the loss of her mother and being in the end stages waiting for someone to pass on. I think you missed her point completely.

AL.
 

GigiDi

Member
Joined
Nov 23, 2008
Messages
16
Reason
Loved one DX
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US
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new england
City
Newport, Philadelphia
yes, umm... actually i used the fact that she can no longer control her dynavox (headmouse) as another example of how she has deteriorated so badly. someone who can no longer control any of their extremeties or neck or facial muscles sadly has more problems than not being able to use a dynavox.

she had two nurses come over today to give her a shower and although this put her in high spirits, the rest of the day was spent sleeping. she's still running a fever with no signs of infection anywhere... the hospice woman will be over again this evening. i find that speaking with her really helps. when she first started coming i kind of saw her as an intruder into our family (i was young and completely inexperienced and ignorant in the protocol for our situation) i was rarely home and the few times i could spend with my parents there were a million people coming and going... wheelchair repairmen, the dynavox lady, the people for the bipap and oxygen, the nurses.... friends and family. we probably should have installed a rotating door because our living room is like grand central station. it still is. i'm not even really sure how to behave with all of these people around because i feel like i have to be a hostess 24/7 when all i really want to do is loaf around, relax, use the gym downstairs and carry on life as usual.... it's a tough time of year for all of this. :(
 

mndireland

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Joined
May 17, 2008
Messages
123
Reason
Loved one DX
Diagnosis
10/2007
Country
IE
State
Ireland
City
Dublin
Understanding

Hi Gigi, I know what you are going through, I am my moms main carer and some days are spent making tea and cakes for visitors all day long, my mom wont use her bi pap when visitors are here, and sometimes i want to shout for them all to go away so that I can veg on the sofa and she can relax on her bi pap, but then i think the buzz of the house and chatter and laughter is keeping her happy, so just let it be. But do chill and relax and let the others run around after themselves! You've enough to do.
I know how you feel about closing yourself away to cry, I do the same, mainly when i go to bed at night, i say my prayers, mainly to my deceased dad to help my mam, but i always end up in tears, but theres no harm in that. Put your brave face on for your mam, smile when she wants to smile but cry if she wants to cry, you will both benefit from it. I never used any sleeping pills, and exhaustion will eventually knock you out! Christmas is a big time for our family, we all love it, and i think my mom is hanging on for it, one because she loves it also and wants to treat everybody with gifts and two because she knows how much we all love it and so she doesnt want it to be a sad time for us.
I will pray for you and your mom,take care
 

Debbie53

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Joined
Aug 16, 2008
Messages
86
Reason
Lost a loved one
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Colorado
City
Greeley
Gigi,

As someone who just lost my dad to ALS (1 month ago) and my mom (5 months ago), I feel for you. I wish I could make it all go away! Looking back, I actually wish I had let my emotions out in front of them more, not less. At the time, there were so many practical details to attend to, there was no time to lose (or so it seemed.) But although I was there as much as I could be and did countless things for them, I wish I had expressed my love and my sadness that they were leaving more. One time I did cry for a few seconds with my dad...I said,"I'm going to miss you so much - there's no one like you!" He said, "Now, now, don't do that." So I sucked it up...but I wish I hadn't. I know they knew I loved them, but still, it wouldn't have hurt to be more expressive. And now it's too late. I wish you all the best.

Debbie:(
 

GigiDi

Member
Joined
Nov 23, 2008
Messages
16
Reason
Loved one DX
Country
US
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new england
City
Newport, Philadelphia
thanks, everyone... i've definitely been stepping up more trying to do my part while i can. today is another bad day... she has her "good days" and "bad days"... i'm sure you're all familiar with that though... sadly my dad panics and blames it on the medicine or the bipap.... he didn't go to work today because she wouldnt let him get her out of bed.

"oh shes not doing well because it's the medicine making her sleepy."
"she hasn't eaten because shes too tired"
"she isn't breathing because its the machine's fault"

there's an excuse for everything and everything gets blamed but the disease itself... it's a little aggrivating. theres this big elephant in the room that he completely ignores and i pretty much just want to turn his head directly facing it, point it out and yell "see?! there it is!"
 

CindyM

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My thoughts are with you today, Gigi. I hope your Mom is comfortable and that you and your Dad are able to get a little rest. Cindy
 
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