Really scared...

[luvnmm]

My mom was diagnosed with limb onset ALS 2009. She has had a really great attitude about the whole thing. She tells me she not afraid, and that she's not angry. That if it wasn't ALS, it would probably be something else. She's one of the bravest women I know. She lives about 2 hours from me, and I do not currently have a car so it's hard for me to get to see her. She was great when it came to the cane. She had a friend that gave her a flower to put on her cane that has a smiley face. She named her Daisy. Then she started falling with the cane so the doctor at Duke recommended she use a walker now and not use the cane anymore. My mom had a really hard time with that and she cried for a while. But she has now named her walker Gertrude and plans to decorate it for Christmas. I know she's brave and not scared...but I am scared, out of my mind. She's my best friend and my mentor and I don't know how I'm going to live without her. Does anyone know what I can do to get over this so that I can be in the right state of mind to help her?

 

[handinhand]

Hi, so sorry to hear about your mom.This is a hard journey. I think taking it one day at a time.Make lots of wonderful memories...spend as much time as u can with your mom...come here often for help,comfort... We have a lot of people here for you and will be by your side as you go down this road. Big hugs, Linda

 

[Harold]

Dealing is tough! My wife has ALS. Everyone that visits or friends that she meets always say she had such a good attitude. Her brother died from ALS about 5 years ago. We know full well what's in store for us. My wife's moniker is: just take one day at a time and read the comics first, then eat dessert and get on with it. I spoke with our nephew a couple of days ago (his father is the one who passed away 5 years ago). He said that humor (IF POSSIBLE) is really the best way to TRY to deal with ..... whatever comes down the road.

 

[Twinsmom]

Dear Luvnmm,
There are unfortunately no easy words or "things" to do to get through this. The best counsel I would give is to celebrate the moments together as much as possible and LOVE. Pray for courage and grace, so that you can celebrate your mom and enjoy your time with her through the tears. It takes a great deal of courage to "live" through this.

Use all the character strengths your mom nurtured in you. Trust in your God to give you the strength you need...sometimes moment by moment-because you will be able to do this. You HAVE to do this. We are all here to encourage you, cry with you, laugh with you and pray with you.

Peace,

 

[lovemydad]

Luvnm,
I think you started in the right place -- talking about it can help. I had the opposite reaction, after initial shock, I went into denial. Its been a year since diagnosis for my father, and now since he is really declining, I am snapping out of it and freaking out as well. I am an only child and live 6 hours away, so i totally understand what you are going through. I think there is no way to "get over this" - you will have so many emotions and everyday will be different, and everyone handles things differently....but yes, one day at a time. Focus on each day you have with her, and not too far down the road. There is no predicting this disease and no predicting how fast or SLOW it will progress.
Is there a local ALS or MDA chapter close to you so that you could attend support group meetings? If not come on here as often as you can -- I am new to the forum, but followed it for months and I can attest to how helpful and supportive everyone is.
I will pray for you and your mother.

 

[hopeful warrior]

My advice is not to beat yourself up. Ever. Whether we are grieving over the loss of a planned future or each function this disease takes from our loved one. This is a tough journey and it can deplete energy from all involved.

Feel free to come to this forum anytime you wish. These folks are here to help. You will find information, comfort, and acceptance here.


Peace to you and yours. God bless you.

 

[luvnmm]

Thank all of you for your comments. I try so hard not to cry when I'm with her because it's upsets her so much. She really wants me to be brave with her. My oldest son and I went with her to Duke ALS Clinic a couple of weeks ago. She sees Dr Bedlack, who is supposed to be awesome. When she got out of the car, she fell and fortunately my son was behind her and was able to break her fall. We struggled to help her get up unsuccessfully and a really nice gentleman walked over and helped us get her up. We got her a wheelchair from the clinic and she sat in that for the rest of the visit. My son was so upset by her fall that he stayed outside while everyone else went in and he cried. I think he's been in denial about all of this and seeing her fall was a true hit with reality. Then, during the appointment we saw the neurologist and she proceeded to tell everyone in the room what generally happens when an ALS patient dies. My son just fell apart. He has never handled death well, and to be told how is grandmother might die just destroyed him. I tried so hard to not cry with him. Tears fall down my cheeks now as I write this. Why can't I be brave like she is? Why am I so afraid? My dad and I have talked and we both agree that we hope she doesn't live 15 years bedridden. She would hate that. She is so independent and having people have to help her do things is very difficult for her. She still drives, which makes me really nervous. Fortunately, she only drives a couple of times a week and it isn't very far.

For those of you that have experience with the final stages of this disease, what really happens? It's one thing for a doctor to tell you, but to hear it from someone who has gone through it is another. Please guide me though this...

 

[Al]

Here is a Hospice link that explains the process. I'm sure others will share their experiences as well. Really sorry about your mom but welcome.
Preparing For Approaching Death

AL.

 

[Phil M]

Gee Al...thats a reallity check.....

 

[luvnmm]

Thank you Al...that was indeed a list of what to expect when death is coming.

 

[abbas child]

Al, thank you very much. Really good information. I have to say, I think it just helped me with having lost my own mother and not being able to be with her.

 

[luvnmm]

Thank you all for your words of advice and encouragement.

My oldest son graduated from college this past Friday and my mom and dad come into town for that. They have been the greatest - if it weren't for them, my son wouldn't have been able to go to college...they paid for it! Seeing my mom was kind of a shock. I haven't seen her in a couple of weeks, and for some reason she looked so different to me. She was using a wheelchair for the graduation ceremony and it surprised me how small and frail she looks now. She's really having a hard time moving around without someone or some sort of device. She's been depressed a lot lately, and also seems angry. She was very emotional at the ceremony. She doesn't seem to eat as much as she used to since chewing and swallowing are getting more difficult for her. Her speech is becoming more and more difficult to understand. I can't tell if the disease is moving fast or slow with her. It seems fast to me. :sad:

My dad offered to let me live with them...marriage difficulties, long story - maybe another time... I wonder if I shouldn't take him up on it. That way I would be close and could be there for her more. I would be able to help with her care and that would give my dad a break. I know it's a big decision....

Thanks for letting me talk...

 

[Hansell227]

Dealing is tough! My wife has ALS. Everyone that visits or friends that she meets always say she had such a good attitude. Her brother died from ALS about 5 years ago. We know full well what's in store for us. My wife's moniker is: just take one day at a time and read the comics first, then eat dessert and get on with it. I spoke with our nephew a couple of days ago (his father is the one who passed away 5 years ago). He said that humor (IF POSSIBLE) is really the best way to TRY to deal with ..... whatever comes down the road.

I agree Harold~laughter is what helps my husband and I make it through the day.We watch no news.Atleast one hour of comedy a day.When you are laughing you are not thinking about this disease! I would like to mention packard sent me an email last week about a new study for famial ALS.I know I did not spell that right -sorry.I could forward the info if you would like.

 

[Blubear]

Hi Linda,
I know what that is like to not see your parent for a week or two and then to notice that they have lost weight or become more frail. It is a shocker. What does help me is to spend as much time with my dad as I can. I notice that when I am with him, I actually have an appetite, and my anxiety is much less, even though I am constantly watching for how he is swallowing, or coughing....I just feel like I have a bit more control when I am right next to him. If you have the offer to go and stay with them, I would take the offer and just go for a week and then see how you feel. I would only tell them and your husband it would be for a week, but if after a week you want to stay longer, do it. Always come here to vent your fears hun. It is what I do, and the people here have helped me get through what I am feeling at the moment. Helping others, also helps you take your mind off things, and in turn you learn. Learn what to expect, try to prepare the best that you can emotionally. Dont expect to much from yourself though. You will go through a ton of emotions all in a day when you are with her. Just remember to try and keep your own anxiety in check while with mom, you dont want to stress her out. Stress and ALS = bad things. Hang in there hun.
Hugs, Kari

 

[jamorel]

Hello Linda. I am not sure I can say much to help, but I will share with you that it is quite alright and normal to be afraid. I cared for my uncle when he had lung cancer, and I shared every day with him when his wife and her children refused to come. It broke my heart in so many ways and for so many reasons, I cry just thinking about it... and reading the link that Al added sent me off into a nice little tear fest.
However, if I was an emotional basket case, I would not have been able to be there for him. What I did with my uncle (Unckie) was I would prepare for every visit and I would focus on him and his smile... and I would find things to laugh about, even if some might think it was in poor taste. My job was to make him laugh and smile, and I put all of my energy into listening and trying to make light of a very dark time. He was afraid, more afraid than me although he would never admit it, and I helped him forget about it for awhile. It can be exhausting, especially when it is not a good day and all you want to do is scream and cry as hard and as loud as you can, but you can't.
With Unckie, I would hold it together and when our visit was over, I would find a quiet place and I would cry, or I would go for a bike ride or a run: anything to help get my energy and emotional strength back. Find the people in your life, be it your best friend or your husband or whom ever you can lean on, and ask for their help. Joy was the person I leaned on when my uncle had cancer... and now Joy has ALS. I havent thought much about the future yet, but I do know that you will need to find a reason to laugh and laughing with her will make it so much better for both of you. You will also need to find a place to cry and be angry, and you should prepare your support people for that so that they can also help you the best that they can. I also recommend that you not dwell too much on the future and what you fear, but focus on the present. Focus on her smile and finding laughter when ever how ever you can because I promise you, that is what you will remember most.