girlfriend and caregiver

[gloria]

hi i'm new here and i don't know how to start my boyfriend has als i can't even start to image how he feels i do try to but i'm afriad my own feelings get in the way. i try not to let him see me crying and i try to keep a happy face for him but sometimes i just break down. how can i get over feeling like i;ve already lost him. he's at the stage now he drinks 1 ensure a day and thats it doctor saids its up to him about the feeding tube and he refuses.
my mind is all over the place one day i feel guilty because i'm mad hes leaving me the next day i feel strong and think i can get throught this with him each day i get up not knowing whats coming or how hes going to be feeling. the doctor told us its just a matter of weeks now because he can't eat. but sometimes i think i'm losing it he just means so much to me
i'm sorry i'm proably not making much sense right now i just found this website today and i never had anyone that was in the boat has me to talk to before i feel like finally someone else that can understand what i'm going through so i'm going to go now and pull myself back together before he gets up thank you for listening

 

[abbas child]

Gloria, are you getting any assistance as you take care of him, or is it only you doing all that needs to be done? If the latter, I can't imagine how exhausted you must be. Usually the forum picks up a bit later in the day and you, hopefully, will get more responses.

I'm not a caregiver, but a patient. I believe that the progression you're seeing should have been discussed between the two of you earlier, when options were available and decisions not yet made. And also, I don't know what else the disease has taken from him. Does he still walk or use his hands, etc? However, if he is set against the PEG (feeding tube), and this is his set course, I hope you will be able to bear it and be there for him through the rest of his time. For now, until others join in and support you, do read in the forum, especially the Caregivers (your current page), but also the PALS page, if you haven't already done so. Gloria, I'm praying for you to have the peace you need right now.
Ann

 

[Katie C]

Ann is right... no matter what your boyfriend's decisions are, you can't do this on your own. First.. bless you for staying around! Now, I'm in the US and there are those who will post later who can give you more specifics but you need to find a support group, and probably some help with cooking, shopping, housework. All your emotions are valid and very normal! Pleast try to get some time for yourself on a regular basis to recharge!

 

[tdamess]

he has to walk his own path and if this is what he chooses all you can do is stand by him and it dosent mean he dont love you ..did he have any support see if you can get him to come here and see all the post things may not be as bad as he thinks they are ... wishing you the best

 

[stephie]

Gloria-
I'm so sorry about your boyfriend. He is lucky to have you. I know what you mean about feeling that you have already lost him. Those moments when I catch a glimpse of my "old" husband are the things that get me through the day. Every once in a while I get a smile or a joke from my husband's computer that remind me why I love him so much.

Your boyfriend has made some important decisions and all you can do is to keep taking care of him. The rest is out of your hands. I will be thinking of both of you!

 

[sharona]

God Bless you Gloria ,If he has made up his mind to not have a feeding tube that's his decision .Please take care of you being a caregiver is very hard .God Loves You & so do we.
Sharon

 

[Blubear]

Hi Gloria, first of all, welcome to our forum. So sorry you had to find your way here though. You are really going through a rough time, and first of all, I want to tell you that every emotion that you are having is a valid emotion. It is all grief hun. Grief for the now that is not the same, grief for the future you will not have and grief for the past you wont be able to get back. The roller coaster of emotions is hard. He is so very lucky to have you, it sounds like you are doing a great job with him hun. Now, cant you have hospice come in to help? You really need to be able to take a break in order to gather your thoughts and not feel guilty over it. You have to take care of you first hun or you wont be any good to him, so please make sure you are getting the rest you need. Hospice should be able to tell you more of what to expect in the near future. Please know that we are here for you any time you need to vent, or a shoulder to cry on.
Hang in there!
Hugs, Kari

 

[Miss]

Hi Gloria,

Try to get some help. Right now (3 months into full time caregiving), I do have people bringing meals 3 times a week. It makes all the difference in the world. Next, I'm going to try and see if I can get someone to come in for a few hours a day and give me a break. My 15 and 18 year old stay with my husband while I run errands, but school will start soon. My daughter will go off to college and my son will be in school, so I will need some help. You will, too. Don't burn yourself out. He will need you.

 

[Jane]

Gloria, I am so sorry for all you are facing. You are very strong to stay and care for your friend. It is soooooo very tiring and you need some help.
You can go to ALS Canada, then to provincial site, scroll down and you will find a list of support group. They cannot help with day to day care but they can give information, and emotional support, as they are going thru the same things as you.
Have you talked to anyone at CCAC, they will be should be able to set up some help for you.
It is really hard to accept the decisions our loved ones make but we must honor their choices.
Please look into a support group in your area.
God Bless
Joan