Worried for My Mom

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GraceD

New member
Joined
Jul 29, 2019
Messages
1
Reason
CALS
Diagnosis
05/2017
Country
US
State
CT
City
Fairfield
Hi everyone!

I’m new here, and joined because I have some questions about my mom’s progression. I am a college student in the uk, and am only back in the us during breaks. My mom has progressed very rapidly while I was at school, and I am wondering how much time we realistically have left.

She can move her toes and her head a little, though is rapidly losing the ability to keep her head up. Sometimes she can move an arm or a leg an inch or two but it takes a lot of effort. She is on something similar to a cpap machine every night. Her oxygen levels are in the mid-eighties during the day, but lung assessments in her power chair say she is below half lung function. She recently started taking a calorie supplement through her feeding tube, eats very little, and chokes on most of her meals. I know she needs more professional care than she is currently receiving, but my father refuses to pay for it, so I fear she may be getting worse from lack of adequate help. My mom has been voicing her fear over leaving my sister and I alone with our abusive father much more frequently, which makes me think she too is concerned about her time left.

I am worried we are nearing the end, and was wondering if anyone with a similar progression (we are just over two years in) could offer advice. Thanks in advance!
 
Hi Grace,

If your mom's O2 level is only in the mid-80s, she is not doing well. I wonder if she is on the right kind of machine (it should be a BiPAP) and how well it is adjusted for her. How recently has someone evaluated this?

If she chokes while eating, I cannot think why she would not be getting nutrition full-time using the tube instead? Choking puts her at risk for pneumonia or an obstruction, either of which can be fatal.

If your father is abusive, and he is in charge of your mom's care, you, your sister and your mom are best equipped to judge how and when to bring this up to your mom's clinic (even virtually), some other local authority, or someone in her inner circle other than your dad, if there is a way for something to change and for her to receive better care. I would like to believe better care is possible for her, but do you?

Separately, you and your sister may wish to consider planning now for what happens when your mom gets worse/can no longer communicate, and after she dies, if there are things you can do now to protect her and your wellbeing and any tangible assets. An attorney may have some thoughts.

If your mom is not getting enough breathing help and nutrition (as it sounds), then she is hanging on through determination and that could end at any time. If there is something she is still hoping to do, experience or know, try not to delay.

Best,
Laurie
 
Hi Grace, welcome here. Nobody knows but if your mom eats very little and does not take in enough calories her ALS will speed up. My partner and I had many conversations about whether it was more desirable for him to reach end of life sooner rather than later. He opted for sooner and I told him that I would support him. I would have supported a different decision on his part too. He did not want to drag out the end phase too long.

If your mother's breathing is as you describe I believe she would qualify for hospice. And then you would not pay caregivers. You need to be a bit careful if hospice will allow the breathing equipment. Some will, especially for ALS patients. Our intake nurse made sure we would get all the equipment needed before we signed on. This included trilogy, cough assist and suction machine for us. They would have given us a hospital bed and a hoyer lift had we needed one and probably some toilet chair too.

Our palliative care physician knew our hospice service rather well and we kept that same physician through the hospice time. I thought that was helpful.

Much luck. I hope that your mother will get good care.
 
My mom has recently been diagnosed after my dad passed of this. My mom has been taking CBD oil and she has no pain and she lifts her neck and is able to function. CBD oil was not available at the time my dad had ALS. My mom takes 1 drop at a time and she can lift her neck and walk more than she was without it.

CBD oil is huge in the US. It helps with anyone with pain. It was recommended to my mom to get the THC (which is marijuina) which I am skeptical about, but it calms the nerves which are in overdrive with ALS. I cannot condone this, but, if it helps with quality of living for my mom..it is up to her. Being that I went through this with my dad, there has been NO PROGRESS with ALS. My dad passed in 2011. It is now 2019. NO PROGRESS! Even with the ice bucket challenge.

I pray for your mommy. My mommy is right there with her.
 
ALSParents,

I am so sorry you went through this with your Dad and now your Mom. Unbelievably cruel.

Just one note - I too was once sceptical about marijuana, but am now a huge proponent. It has helped my DH, who is my PALS immensely, especially with anxiety. Medical marijuana is legal where we live. I have found the personnel at the dispensaries extremely professional and well educated on which strains are most beneficial for which symptoms.
 
My mom had an orientation with someone here in Texas. they said that marijuana calms the nerves and can slow the progression. We have to go to Oklahoma to get it. I see you are Jrzygrl. Me too. Both of my parents lived in Jersey for 40+ years. we are wondering if Jersey has something to do with it. Does New Jersey have a larger population of ALS? could it be a hot spot?
 
As a relatively populous state, Jersey will have more ALS pts than many others, but there is no evidence for a cluster there. Epidemiology studies have noted seemingly higher (2x) prevalence of ALS in whites than blacks [health care access could also play a role in diagnosis rates], and thus more cases per 100,000 in the Midwest and Northeast.
 
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