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jessielf

Active member
Joined
Dec 26, 2011
Messages
66
Reason
Lost a loved one
Diagnosis
08/2011
Country
US
State
WI
City
wis rapids
Hi I am new here. My mom got diagnosed w/ ALS at the end of July of this year. Her symptoms started off at the beginning of this year. She is only 53. We have recently lost 3 family members w/in the past 4 years, 2 being my dads parents and my the other my mom's dad. Now we are losing her,:sad: I have 4 children and one on the way due in May. I am really close w/ my parents and I do have God in my life, but having a hard time excepting that my mom will not be w/ us for long since its been progressing. I am very grateful to still her. I however find it very difficult to have to hear about it all the time. Especially if something like it took her 25 mins to get off the toilet. I know she has every right to feel the way she does and I'm trying not to let it get to me. But every time I'm w her something is always brought up. At times I am good but it when I'm around her and my grandma the mood just changes and I know one of my daughters is picking up on it. My mom always asks me whats wrong w/ her, she is 6. I find myself making up excuses. My mom and grandma don't look at positively at things. It seems every time I see her something about her gets worse and I see my mom at least twice every other week if not sooner or talk to her about once a week. I used to talk to her longer, but I just can't stand hearing how she feels. My mom has been a drama queen before she even got this disease so it makes it that much harder to deal w/. I tried to tell her I DON"T want to know that she is getting worse and that I just want to accept her just as the way she is. I know what whats coming and being around her makes it worse. I constantly cry. I don't want to have people to feel sorry for me. I just want my whole family to accept this and I know its hard. But I want to try to keep thinking positively to get through this not only for myself but for my own family and unborn son. I try to be thankful for what I have now. My mom says that she is trying to stay positive but she's not. I dread a person to "ask" how she is feeling and she starts by saying "we don't tell people what I have only IF they ask" Then ofcourse she says not good, I can hardly walk and I can barely swallow. Its really hard to hear it over, and over and over again. I sometimes don't even want to talk to her or be with her cause she just go w/out bringing some thing up about herself or dying. But yet she wants me to call more and visit more often. My mom's bday is Christmas Day and yesterday my dad told me that he wants to talk w/ my sister and me later. Even before my mom got diagnosed she gave me a paper about her last wishes. I know God has a plan for everyone. I wish she had more will power but I can't change her attitude about what she is going through, only mine...I know she has ALS, BUT we are all going through this w/ her and she is the one who is going to die and if she excepts Jesus she will go to heaven while we are going to be still alive trying to pick up the pieces and figure out how to go on w/out her:-(
 
jessielf, you sound so overwhelmed with everything in your life, not to mention your Mom's diagnosis, and being pregnant with #5? One day at a time, sometimes one minute at a time is helpful. I don't know how old you are, but your Mom is my age, and I choose to LIVE with this diagnosis, not be dying from it. At least not yet. Has your Mom looked into clinical trials? Be proactive, find out info about this, and have her stop dwelling 100% about this. Yes, life has changed for all of you, but you all still have life.

I have a little story: my Mom told me that every Christmas my Grandmother (her Mom) would say "Oh this was such a nice Christmas, I won't be here for next year..." and my Grandfather would chuckle and say, "Well, sooner or later you're going to be right!" She lived to be nearly 90 years old, but said that for probably 40+ years.

I hope you get my point, and see if you can get your Mom and yourself a therapist to talk about how this is all impacting you. Being pregnant it's possible that you already have some depression due to hormone changes, please talk to your OB about what you can do to improve YOUR outlook on things, and stop dwelling on your losses.... instead, focus on what you have: 4 beautiful children, and a new life on the way!

BTW, little kids are pretty smart, what does your daughter know about her Grandma's diagnosis? It's best to let her know a little, as age appropriate as it can be, but I wouldn't tell her that her Grandma's dying, until it really is happening. People can live longer and longer with assistive devices.

That brings up a question: is your Mom going to an ALS clinic? If not, she should be to get that "one-stop" shopping, including social worker, pulmonary, neuro, etc. Call the MDA or ALSA for assistive help, maybe a scooter so she can get around. I have a wheelchair as a loaner, but don't use it, but am on my scooter all the time. I can zip around and feel good, the wheelchair makes me feel sick... and I don't want that right now.

Good luck, please try to stay positive, and talk to someone whether your minister, a therapist or a social worker about what is going on.
 
Thank you HelenL for your response. I'm 31. At times I am overwhelmed. At times I can do very good and accept what she has, until I talk and see her and she initially brings me down which was yesterday so then I usually have a down day.

We don't have any ALS clinics in our area. A specialist that is about 2 hrs away is the one who diagnosed her. We tried to talk to her about going the Mayo clinic, but she won't. She was put on something but the Dr said that it would only help for about 6 months and that's all they have for her for now. She sees her neurologist about every 2 months and will go back to the specialist in summer. I told her about the power chair but she said not at this time, she does have a walker w/ breaks and a wheel chair. Unfortunately she seem to be progressing steadily, w/in 2 months she has gotten a lot worse and I'm sure her attitude towards it doesn't help either. She has a hard time catching her breath, and according to her neurologist she doesn't have alot of air in her lungs, harder time swallowing, more fatigued, and she just gave up her license to drive. Sometimes she can be good about it but over half the time all she brings up are conversations she has w/ people then telling us they started crying and/or they don't know what to say to her when she tells them what she has. She is never positive when she talks about it either. When people ask her how she is doing she pretty much says not good and talks forever about what she is going through. My grandma won't stop dwelling on it on it either. She is still trying to get over the loss of my grandpa who we lost in July of 10 and now that my mom has gotten alot worse she isn't taking it too good and I think she is depressed. I don't dwell over my grandparents who have died and I'm at peace about them.

My mom doesn't want to go see anyone or do anything else. You try to talk reason to her and she hangs up on you. My grandma knew a priest that had it and wanted her to talk to him about but it but he passed alittle over a week ago. I try to take it day by day and like I said I do really good until I see her. This disease is taking her down. She calls herself a burden or doesn't want to be one. I know my mom needs to vent. but she won't talk to a counselor or any body so we get to hear it. In front of her I try to be as normal as I can and even try to change subjects which then she gets mad I think because my sister does that to her and she tells me about it. Sometimes I get to the point where I don't even want to be around her or talk to her. ALS is rare around us and even the Drs she sees doesn't even know the drugs she is on and has to look it up. Thats why I am online looking for support. I feel bad about not wanting to be around her but I don't know what else to do or how to just let my mom keep on bringing up all her problems and how she can't do certain things anymore. I just need someone elses outlook who is going through the same thing she is. At times I want to tell her how I feel but she is the one going through this and I don't think I have the right to voice my options or how I feel on the situation. I know that she shouldn't let this disease get to her but she does. I wish she had your outlook on it. My dad freaks out when she is just laying on the couch at times I guess she looked like she was dead and his heart dropped. This past Thanksgiving she started to choke and my dad didn't know what to do. He calls her at least twice a day from work. I would LOVE to see her more positive, but she is just so stubborn and is a glass half empty type of person.

May I ask how is your outlook on it? I would really like to hear from someone else who has it. Thanks Jessie
 
I'm very sorry about your mom. Although my mother does not have ALS, she does have a glass half empty. I've dealt with that half empty glass nearly all my life and it can never be filled. Neither will you be able to fill your mother's glass.

If she does not have cognitive disorders ,then I suggest you have a talk with her about enjoying the time she has left and perhaps you can suggest some fun things that she can still do with you and your children. (Take the focus off her and the disease.) Of course, she may be stubborn, but I find redirecting works well in dealing with my husband, sometimes. This suggesting will involve, "I will pick you up at so and so time and WE will be going to so and so place, so be ready." If she is not ready, get her ready and take her anyway! If she absolutely refuses, then let her be and go on about your life knowing you have tried to help her enjoy her life.

You cannot shoulder this all by yourself and neither can your dad. Just be there for him and you will be a great daughter! He needs you more than you know...
 
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From my perspective, everyone with Als has their own way of dealing, my husband does not complain much, but cries sometimes. I try to look at it like this, If I were in anyone's shoes that had Als. I really don't know how I would feel nor act, I would like to think I would be like our Annie, so faithful to God even with Als, and alot of others on this forum that are at peace mostly taking it day by day, but I just don't know...Please cut your mom some slack..
 
You've got some amazing advice from Helen, Cindy and Joni....I wish I something more helpful to add! Hate you have to be on this journey with the rest of us, however, please know that you will never find a more amazing and supportive group of "strangers"! Hang in there sweetie! Hugs are being sent your way!

Ruth
 
Jessie, I'm so sorry that your family is having to deal with an ALS diagnosis.

I understand how frustrating it is to deal with a Mom whose glass is half empty. I'd swear that my Mom felt like a few other folks had straws in her half empty glass. It's miserable! If she won't accept counseling, get some for yourself and your Dad. You'll both be better able to deal with her negativity if you do.

I know it's difficult to watch someone decline, but keep in mind that your Mom is rapidly losing her independence. This is very tough for those of us with ALS. Do whatever you can to promote whatever independence is left to her.
If a bathroom remodel isn't in the works get a bedside commode to place over the toilet. Medicare will pay for it with a Dr's script. You can adjust the height, and it has arms to push up from. It will make it so much easier for her to get herself off of the toilet. Place baby-wipes close at hand.

Put some "bed risers" on the legs of her sofa or favorite chair and make sure it's against the wall and won't slide as she tries to get up. It's amazing how much independence these little things have given me in these early days of ALS. See if you can get her a lift chair, Medicare will pay a portion of the cost with a script from her physician. Check into AFO's to aid in her stability while walking.

Put bottles of hand sanitizer out. Put a container of clorox wipes in the BR so she can tidy up around the sink and keep the handles on her walker germ free.

Rearrange things in the bedroom, bathroom and kitchen so that the things she uses on a daily basis are easily accessible to her. Pick up one of those reachers so that she can safely pick up things out of the floor or that are just out of reach. (Mine even has a little magnet on the end and a short sturdy rod to pull things forward.) Get a cup holder for her walker so she can easily carry her own glass of water or cup of coffee. I sometimes use a small plastic tray on the seat of my walker to transport dishes or other things.

Make sure she packs her "walker bag or basket" with things that she'll need during the course of the day so that she can conserve energy. Pre-program numbers into a portable phone or cell and make sure she carries it with her at all times. Get a service like Life-Line so if she falls she only has to push a button to get help. Since my CALS works in an office we use the IM feature on SKYPE to keep in touch throughout the day.

Keep in mind that most of us do NOT like to ask for help. Any little change that can be made to promote independence is a good thing. Sometimes the changes that are happening to our bodies come on so rapidly that we really haven't had time to mourn for the previous loss and we're overwhelmed. Acceptance of our ever increasing limitations is difficult.

Learn to use the search engine here on the forum. Read old posts so you'll have an idea of what changes lie ahead and be proactive.

Good luck to you and your family.
 
Great advice from everyone. EAch PALS deals in their own way. Books on tape? Realize you can't change her but maybe your regional ALS group can help. They have loaner equipoment and really knowlegable people.

My thoughts and prayers are with you. As my Mom used to say, "If you want to make God laugh, make plans." Good luck.
 
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