Feel hopeless for my mom

[ekm1979]

My mom was diagnosed with ALS about a year ago with I think bulbar onset? At this point she cant talk.. well I can understand her most of the time but no one else can.. and she cannot swallow. She has a g tube. I'm expecting a baby in less than a month and my mom is really excited.. but now she is having problems grasping on to things.. i fear that she won't be able to hold the baby. I worry about her day and night and being extra sensitive I cry for her so much. I want to help her. I want to cure her. I want to take her ALS and beat the crap out of it. She takes Lithium and Rilutek. I feel like Lithium makes her more lethargic and less energetic. I'm no doctor so I dont know. She used to be so energetic.. she can barely walk a block without her legs feeling weak. How could a strong healthy person get so weak in such a small period of time? I'm angry. She stopped going to physical therapy because she said it wasn't helping. I'm trying to find a neurological PT in my area. Does anyone go to a PT and find it helpful. My mom expresses she just wants a massage. This is my first "thread" I'm new to all of this.

 

[brooksea]

Congrats on the coming of the little one!

Don't worry, your Mom will find a way to hold her grandchild! Y'all will be creative I'm sure! She will still be able to feel the baby and that's what counts. The soft caress of a baby's cheek on your mother's, would, I'm sure make her so very happy!

Range of motion exercise is important, but unless a PT is familiar with ALS, I wouldn't trust them to deal with a PALS.

Is your Mom going to an ALS Clinic? They would be the best ones to advise about PT.

 

[jskierz]

Your Mom will be able to feel your baby's love and indeed hold your baby in a creative way.

I feel your pain - I have progressed from having a fall in November and waiting three months to see a sports medicine doctor in March because we thought something was wrong with my knee to walking with a cane and falling, walking with a walker and falling and am now in a wheelchair and waiting for a power chair from my local ALS Society. It is really scary to be on the inside of this and have things happen so rapidly so I can only sympathize with how you feel for your mother and how she must feel.
Hold her, hug her and do your best. And yes, I wish there was a cure for this terrible disease.
j

 

[Al]

If you look at my profile picture I am holding my granddaughter about 14 months. Family put her on my knee and I drive around the house and she doesn't move. I think she can sense that if she squirmed I would have trouble holding her. She loves the rides. I think you and your mom will figure out a way for her to hold the baby. A sling would work.
AL.

 

[fiddleplayer51]

Hello ekm,
I'll bet your new little one will lift your mom's spirits! One of these days we will beat the crap out of ALS! Until then we have to hang together and help each other out.
Like CJ said, range of motion is good and so is stretching. Keep us posted about whether your mom goes to an ALS clinic.
I can only speak of my PALS husband's situation, but he too decided not to go back to PT after just one session, and just does his own range of motion and stretching routine. He finds that very helpful. His ALS is also bulbar onset diagnosed in March of this year, and like your mom, he can still walk but not nearly as far. He decided against Rilutek and Lithium.
I hope you can scrounge up some joyful moments as you await the birth of your little bundle. Good luck and post back when you need to.
Jane

 

[CindyM]

I use a sling for my latest little grandson. Like Al says, I think the babies have some sort of sense about these things. Without the sling, I can only hold little Daniel for about 5 minutes before my arms get real tired, but whenever his Mom places him in my arms, he snuggles down and lies real still.

His cousin Connor, who is older by 5 months, used to do the same. But now I cannot pick up that chunky little fella at all, LOL. I have found a way to make myself indispensable to him, in any case. He is too strong for me to hold and I don't have a cool wheelchair to ride him in so I lie on the sofa and he sits in his little jumper toy and I pass him toys.

Connor's older brother and sister are into make believe and there is a LOT I can do with them. All I need is a sofa, a toy telephone, and my imagination. I cannot tell you how often I had to place an emergency "phone call" to Spiderman to come and save one of Nora's baby dolls. This entertains her big brother Nathan as well. We are making great memories, all of us, and I get to be the cool grandmother who plays for hours at a time. :-D

 

[mndireland]

Hi ekm1979, our situations are very similar, and if thats your birth year then the same age. I too care for my mother who was diagnosed in oct last year, she was very energetic and worked full time until diagnosed, drove to the shops, went out on weekend etc, now she cant leave the house unless someone helps her get dressed and drives her around. It started in her hands, and now her hands and arms are completely effected, its difficult to grasp the slightest thing. At the moment her legs are getting weaker by the day, and her breathing is getting worse also but she has no problems with speach. I want a baby and have done for a while now but have put it off as dont know if i could look after a baby and my mom at the same time. Would it be selfish of me to have a baby now? My mom keeps telling me that she wants to see me have children so that makes me a little more determined to have one, also she says she wants to dance at my wedding, but even though we planned on marrying, after booking it i just didnt get excited about it or look forward to it, so we've put it off for a while. I do want her to dance at my wedding and hold my children but will it make her even more sad that she wont be able to dance at the wedding if her legs get that bad, or if she cant hold the baby, DOnt know whats worse! Congrats on the baby, hope all goes well, and your mum will see her kiss her and hopefully hold her, My thoughts are with you

 

[CindyM]

Getting pregnant is one of those things that if you over-analyze, you will never do it. Sure, you should wait until you are an adult in both years and emotions, and you want to be sure you can financially support a child, but after that there really is no "best" time.

In the heat of the summer, cold of the winter, while you are young and energetic, older and more seasoned, while your Mom is able to enjoy or later when you have more time- one could go on forever. Just jump in, is my take on it. :-D

 

[ekm1979]

thank you

I don't even know any of you but already feel such a connection. I just told my mom about the sling idea and she got the biggest smile on her face and clapped her hands.
Mndireland: if you are ready to get married and have children DO IT! I just got married in January (we were planning for august and then oops i got pregnant) and it has been such a blessing to see my mom's excitement at the ultrasounds and heartbeat sessions. I'm allowing my mom and husband to be in the delivery room with me... the thought of my mom being there when she hears her granddaughters first cry tears me up. I love my mom so much, I pray for strength everyday. My mom and I are learning sign language while her hands are still working. It has helped a lot since writing all the time can be frustrating. God bless all of you.

 

[fiddleplayer51]

ekm,
You're a great and thoughtful daughter. You sure found a way to put a smile on your mom's face! In less than a month she'll really have a big smile when she hear's her grandbaby's first cry.
I wish every good thing for you and strength and joy!
Be strong!
Jane

 

[Tfisher]

ekm,
I know how you feel. My Mom was diagnosed in July 08 with bulbar onset ALS but has had symtoms for a year before that. I am also the one that seems to understand her better than most but her speech is pretty bad now. My Mom was also going to PT but the ALS clinic told her that she should concentrate on stretching and staying flexible and not strengthening her muscles since that won't help her but would be a waste of her energy. My Mom also has been thinking about massage, I just haven't gotten around to checking with a spa to make sure it is pleasant for her because of the excess saliva and the inability to lay flat on her back because she can't breath. It is a scary horrible disease. Tfisher