Help - Did Not Plan for After | Caregiver Action Network

Help - Did Not Plan for After

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Help - Did Not Plan for After

Because I didn't plan for after mom passed my son and I are looking at losing everything and becoming homeless. Have been caring for my 73 yr. old mom with ALS (Lou Gehrig’s). She just passed away from complications of ALS 1 week ago, which was not expected. We are devastated that we lost our mom, best friend and grandma.

My father was killed during active duty while serving our country and my mom never remarried, so money, resources and support were/are a huge issue.

I had heard the term ALS (Lou Gehrig's decease) but never knew what it was or what it did to a person before my mom was diagnosed with it. We spent many trips to doctors, specialists and tests trying to find out what was wrong with my mom before she was finally diagnosed. By the time it was figured out what she had, since there is no test to definitively pin point what your symptoms are from, her ALS was advanced. It has been so hard, heartbreaking and sad, it has taken its toll on me and my son (who also lived with his grandma and me). I was even angry and frustrated and I still am at times wondering why my mom? Why is there not a cure for this horrible debilitating decease? My mom had always been a strong independent woman and she put up a long hard fight, but this was a fight she could not overcome. I wished with all my heart, and still do, there was/is a cure for this monster of a decease!

DO NOT GET ME WRONG: I WOULD DO IT AGAIN in a HEARTBEAT! My son and I cherished every minute we had with her! And her passing is absolutely devastating to both of us. But I would do a few things differently

My advice to anyone faced with a close loved one diagnosed with ALS or any other similar situation is: Please do not make my mistake

a) It is very hard, on several levels, to be a caregiver to someone with ALS, it is a 24 hr. - 7 days a week job. So be sure you find support right at the start. To help with the care, physical, emotional and financial burdens that will come up for everyone involved. My mother wanted to stay at home instead of being in an advanced care unit, but she did not want to be a burden (her words) to my son and me. As hard as this has been on us, we could not put her in some facility to go through this horrible scary decease alone with strangers. Plus we wanted to spend every minute we would have with her while we could.

b) Make sure you set-up plans/finances for your loved one and yourself ahead of time for when they pass. I was so involved with caring for my mom I did not do this. Maybe I did not want to face the fact that she was going to pass away sooner than later, or it was a little bit of both. Now, not only do I have to get everything taken care of and figured out for my mom, but for me and my son also, and we only have about 1 week to do it. I did not think about how my son and I would be able to afford the rent and bills by our self or where we would be/live when she passed. Because I kept putting it off and not wanting to face that she would be gone, I am at a loss for what to do, I am physically and emotionally drained. Now not only do we have to deal with our pain, grief, loss, plans and financial stuff for her, but after this long hard battle my son and I are most likely going to lose everything we own and be homeless at the 1st of the month during one of the most hardest times of our lives.

So please get help, support and everything figured out at the beginning so you do not end up in our situation.

Anyone with suggestions or know of any place that can help, please let me know. Now my son and I need the help instead of being the ones giving the help.

Tired Daughter
Tired Daughter's picture
so sorry

I see your post was last year and no one responded to you.   I am so sorry you were facing that at such a horrible time in life.  I pray that you and your son found the answers you needed.

The United States needs to seriously look at this situation and find some way to help struggling home caregivers.  Baby boomers are soon to be in need of care and that will cripple our country if our government doesn't get it act together soon.

There needs to be support put in place for us!  We are the hidden victims of the conditions that our loved ones suffer from.


My first symptoms of ALS occurred in 2011, but was diagnosed in 2013. I had severe symptoms ranging from shortness of breath, balance problems, couldn't walk without a walker or a power chair, i had difficulty swallowing and fatigue. I was given medications which helped but only for a short burst of time, then I decided to try alternative measures and began on ALS Formula treatment from Health Med Lab Clinic Centre, It has made a tremendous difference for me (Visit email: I had improved walking balance, increased appetite, muscle strength, improved eyesight and others.