Stages and End of life

[lgantert05]

Hi All,

I know there arent any known "stages" but I am trying to figure out when I should move back home to be with my mom. She is probably in the beginning, moving into the middle "stage." I would like to hear about the progression of others, how long people lived, how long the last stage lasted. What the end was like. Sorry, my mom was just diagnosed but already has left foot drop, slurred speech, trouble swallowing. Its weird to me because I have heard trouble swallowing is more towards the end but she can walk around still?

 

[momap53]

Progression is so varied it's hard to say. Some present with speech, swallowing issues, others can eat almost to the end. Same with ambulation or arm strength.

Check out videos called the ABC's of ALS.

 

[Barbie]

Hello, and welcome.

First you need to understand that there are no hard and fast rules for progression or real, defined stages to ALS. so someone can still be walking and be on a bipap or even die, or someone can be completely immobile and still have pretty good breathing. I am mentioning breathing because it is respiratory distress that usually ends a life here. I wish I could tell you how soon she will need you--I would bet already though. her progression will continue each day, and living alone is very scarey and dangerous if she falls or chokes. I would begin to make preparations to move if oyu need to --you just never know how long she has.

How good that you are going to help her--it is very hard too do but one of the most important things you can do as a daughter. please stay in touch--we will be here for you to support you as needed.

 

[lgantert05]

Thanks! I just need to figure out all of my personal stuff. If I quit my job, my family wont have health insurance. We really cannot afford to do this but I WILL make it work, somehow! I will not miss the last days with her and I will not allow a stranger to take care of her (not that there is anything wrong with that). I feel like this is my job. I dont want any regrets! My dad and brother live with her now so she is not alone!

 

[Barbie]

Wow, quitting a job and losing your insurance is a big deal...
How far away does she live frrm you? if she is close by, she may not need round the clock help for a while, and with your dad and brothr there you maybe should wait and see.

If she were alone, it would be different, but with three of you to share the care it will be so much easier. maybe you should sit down with all of them and have a family meeting--set up a care schedule that allows you to keep your job. beleive me, working out side the home if possible helps keep the caregiver from going crazy! You willknow as you get closer to the end, and she will need you more and more. I would not rush since there are others there in the house with her.

 

[momap53]

See if you could take family leave at some point

 

[lgantert05]

I got approved for fmla but its not paid. I do live 12 hours from my family so its not easy to go back and forth. I guess I will have to be patient and not make any plans yet!

 

[KissJ]

This is only Stages as far as a caregiver is concerned. There are no time lines as stated before here and on this forum..it is different for every person! Every persons onset is different, the progression is different, and length of life is different.

As a caregiver this has helped me to know what to get for my husband in advance and what to expect as far as care. Even this is different for what an individual needs and they overlap at different times during the progression. This is one of the reasons this disease is a Monster!

 

[cervus]

I used to wonder the same thing, lganter05, at the beginning of my husband's diagnosis, but learned early on that as important as it is in some aspects (financial planning, etc), the most important part was to live day by day and to enjoy each moment with each other. Since you asked though, and know progression is different for everybody, my husband lived 9 months from diagnosis. However, he had hand weakness for 2 years prior to that and had started slurring about 9 months before diagnosis. Slight slurring. We started seeing a neurologist in June of 2010, diagnosis was on 08 November, 2010 and my husband passed on 17 August. 2011. I have been on the forum since March 2010. Including my husband, many have passed, some have had rapid progression but so many that I originally "met" are still going strong. They are amazing with attitude and willingness to share everything they can to help others.

We held off on having a "stranger" come in to help out but once we decided to get home care involved, we all just felt so relieved. My husband was completely comfortable with our decision. We had a male care assistant who came in the mornings to help get Bob up and ready. My daughters and I did the rest. But that was a huge, huge help.

So sorry this is happening to your mum and your family. Yasmin.

And oh. Bob's passing was peaceful. Had these weird spasms but otherwise peaceful.

 

[AnaMaria]

I just typed a lengthy reply, but got disconnected...
I know how you feel - my mother has ALS and I took a leave of absence to be with her. I need to go back to eastern Canada next month (in Seattle now for over 2 months). I will come back again - this is my reality. Though my 80 year old father does what he can and I have 2 brothers in the area (they could be more helpful by far), and I hope we get some outside help, I feel I need to be with mom. I would never leave my children helpless, how can I do that to my own mother?
This is so difficult. I want to be with my husband, my children (grown now), my dog, and rather new home (there were so many reno plans).
Also, my mom fell about a year ago - so please get yours a walker or wheelchair if you have not done so yet as now she is terrified of falling (fractured her lower spine and was alone when it happened).
The emotional rollercoaster is worse than the physical demands in my opinion. Grief, fear, how can God?, etc. The demands? Mom was a bit of a hoarder and now I am cleaning and clearing for her... Cooking more than ever. I'm an artist, not "this". I'm not good at the home-maker stuff. Now I have to try to be "this other person".
I too, would like to know how one "goes". I pray its not terrifying, as mom does not want a feeding tube or a ventilator.
All I can say now (getting late) is you are not alone. I am living this too - as are others. I hope we both find the answers. If not answers, some peace. I'll take a good nights sleep at this point... can't remember when that last happened.
God bless,

 

[notme]

For some with ALS, swallowing is one of the first signs. It doesn't mean at all that she's 'near the end'. If shes considering using a PEG--now might be the time to consider having one put in.

PALS also do quite well for an undermined length of time with a bi-pap for help with breathing--for instance, when sleeping or napping. Some use them during the day to get 'used' to them.

You don't mention her age--but the older we get-the harder things can be for her to deal with. If she doesn't have a wheelchair yet--encourage them to start the process. As stated, I'm sure, falls are a real hazard for PALS.

With swallowing, choking is a real hazard--and can cause aspiration of food and/or liquids into the lungs. It's to be avoided for obvious reasons. There are thickeners for liquids if it's an issue.

It is hard to know what to do...but swallowing alone doesn't mean you need to use your FMLA today or tomorrow.

 

[lgantert05]

She is 55! I am going to go be with her for about a month. My work is going to allow me to work from home part time and use some FMLA. Then I will probably come back home for a few weeks and continue that for a while! thanks

 

[Amy Perdomo]

lgantert05
my mom walked up untill hours before she passed....her progresion was very quick, after she was diagnosed she lived 1 year and 4 months , the last 2 months i would say was her worst but because she had alot of head drop and breathing issues, she was already on a peg tub months before..i know how you feel, because i was exactly with the same questions, but really every single person is so different....no one can really say, my mom hated the bipap...and she almost only wore it at night and not the whole night either...very uncomfortable for her...i wish i could give you some exact answers, but really there are none...

take care Amy

 

[Nighthawk]

Does she have Medicare?

I don't know how it works but, I've heard that Medicare might help cover part of the costs in the event you need to hire someone part-time (with medical expertise) to look over your mother while you are away.

Regards.