My mom has ALS

[Jennifer1975]

Hi there. My 59 year old mother has ALS. She has been diagnosed since about two years ago. She had symptoms long before then. She has gone downhill in the past few months. She has not been out of bed in several days. She used to get out of bed for at least an hour each day. She is on a bipap 24x7. Her short term memory isn't very good at all. She can still eat for the most part but needs help. I am not sure at what point to get a feeding tube? My brother and I are her primary caretakers. I live with my mom and my brother lives across the street. We are using Hospice since maybe two weeks ago. They have been helpful. I wish I knew how long she has. I don't know how long someone can live using a bipap 24x7? She does not want a ventilator which I think is the right choice.

I am glad I found this board. I have found it very helpful.

 

[sadiemae]

Get a feeding tube ASAP. Breathing issues are a factor however. If breathing(FVC) is to low, they are hesitant to put one in. HUGS Lori

 

[luvnmm]

Jennifer - I am so sorry to hear about your mom. My mom, who is 64, was diagnosed Sept 2009. She seems to be declining quickly, to me anyway. From what I have heard from other forum members, get the feeding tube as soon as you can. As for the bi-pap, I'm not that experienced with that yet. I know my mom sleeps with one and she sleeps about 10 hours a night. Sorry I can't be of more help on that. Take care and know you have found a great place. I love it here.

 

[Rose554]

My Mom was diagnosed in Sept of 2009 also Linda. Since then and especially since the beginning of 2010 we have seen a huge decline. This past week she was doing a sleep study using the BiPap (so she could get one). After night #2, she refused to try anymore. Ultimately it is her decision and I support her in her decision. I won't be surprise, when the time comes, if she refuses a feeding tube and I already know she doesn't want a ventilator. Our only choice at that time will be hospice. She's 78, has had a great life and her and Dad have been married 58 years. Jennifer, hugs and love to you! Just a nasty disease....

 

[luvnmm]

Rose - my mom already has the bi-pap, she's had it for months. She also has added oxygen. She was talking with a slight slur and slight weakness on her left side when she was diagnosed. Now, she's in the process of getting her pwc, it's getting difficult to understand her when she talks, and she is losing a lot of strength on both sides now. She says she wants the feeding tube when the time comes, but she's unsure about the trach (unsure of the abreviation here) - is that what the ventilator is? My mom has had a tough life, but since she and my dad got married, I think it's been a good one. She's seen her oldest grandson graduate from college, and her youngest enter the
5th grade. She's seen me have the most beautiful wedding ever. I think she's had a full life. She's gotten to learn to paint with water colors and have her own shows. I've got multiple pictures she's done around the house. That reminds me, I need to ask her if she has more that I can have. She has been the most wonderful mom a girl could ever have. She is my mentor, hero, and best friend.

 

[Jennifer1975]

Thanks everyone for your replies. I am going to talk to my brother about a feeding tube. I am glad I have a place where I can come an actually have people know how I am feeling!

 

[luvnmm]

Hey Jennifer!

I was just checking in with you and seeing how things are going. Were you successful with the convincing of the feeding tube? Let us know how you're doing.

Take care,

 

[Jennifer1975]

Hello. Gosh, I can't believe how fast time has gone! About the feeding tube, I guess since she has not trouble swallowing (which is unlike most ALS patients) there isn't a need for a feeding tube. She pretty much can't hold utensils anymore since her hands are so bad. She eats finger foods or has to be spoon fed.

She is not doing well though. She has not had a bowel movement in over a week and she has been given stool softeners. She is on morphine (usually .5 every ten hours or so, sometimes more frequent). She is very hard to understand when it comes to her speech. She sleeps A LOT. I know part of that is due to the morphine. Last night she was hallucinating. She was saying she was seeing a lot of colors and butterflies flying around. She was saying she sees herself in the TV and wanted to know why her walls were green.

I know the end is near and I have accepted that since she is so miserable. I just wish I knew about how long. Days? Weeks? Months? I know no one can tell me, I am just thinking out loud.

 

[laurel]

Hi Jennifer. Your mom is going to need an enema asap. A week without a bowel movement is dangerous for her. Do you have a home care nurse involved? You better contact someone quickly to deal with that situation. Morphine is very constipating. I'm sorry that she is doing so poorly, but her bowels are making things worse and it need not be this way. Keep us posted.
Laurel

 

[Jennifer1975]

Hi Laurel,
Thanks for the reply. We are using Hospice. I will give them a call. Thank you so much for the info.

Jennifer

 

[hjkangel]

Hi Jenn. My Dad was diagnosed 3/10 and since then he has lost use of both arms and legs (we had a fall just last night as my 74 yo mom and I tried to transfer him and the legs gave-he is ok tho. we just lowered him down on the carpet). Dad is short of breath all the time but not on CPAP or BiPAP. He is a skeleton of what he used to be. It is heartwrenching. ALS is a brutal, unforgiving disease. I am on LOA from my job (and my life and other responsibilities) to help take care of Dad. Dad does not want a feeding tube or vent. We respect that. We go to the ALS clinic Mon (which seems like a long way off). I believe they will then certify him as hospice eligible. He likely will end up in a hospice house down the street from us (that the 3 of us checked out a few weeks back-a lovely place) so he can get 24 hr care, as Mom and I both have bad backs and things are really physically tough now (even w/ a hoyer lift). None of us are sleeping well. I wish you the best. we can all relate. You are not alone. You are among friends.

 

[Jennifer1975]

Hi everyone. I was not on this board long enough to get to know anyone real well but everyone has been so nice and supportive and helpful.

My mom passed away two days ago in her sleep. I am so glad it happened that way. The night before was a normal evening for her. For us. She had dinner. We watched Hell's Kitchen. I checked on her right before I went to bed around midnight that night. She was awake and watching TV. I woke up around 6:30am the next morning and she had passed. It's a comfort to know she is walking and breathing on her own in heaven with Jesus.

Thank you all for replying to my posts and giving me advice and support for the short time I was on this board.

Hugs,
Jennifer

 

[CAHPAH]

Jennifer
So sorry for your loss.

 

[DgtofTNfan]

Jennifer,

I am so sorry for the loss of your Mom. Thinking of you and your family.

Dana

 

[abbas child]

Jennifer, I am very sorry for your loss, yet glad your mother's end was so peaceful. Thank you for sharing that with us. I pray you will know much comfort and peace even while you grieve.
Ann