update and proper introdiction

vtgsell

Hello,

I posted a few weeks ago that my mom had broken her hip and I was not sure what to do next.  I received so many supportive replies, thank you to you all.

I wanted to post a proper introduction and an update on my mom.

In 2019, I was aware something was wrong. my mom lived alone and I lived about 500 miles away.  I didn't appreciate the gravity of the situation.  In early 2020 she had a car accident that brought into clear focus that something was very wrong.  I moved her to my state about 0.5 miles from me.  We enjoyed time together as things shut down for covid but she started getting UTIs at the end of the summer and just before Thanksgiving was diagnosed with stage 3 bladder cancer.  She underwent a 6 week course of chemo-radiation and broke her hip one week later at the end of Feburary.

At the time of the cancer diagnosis I could guess she was about stage 4 and was an active participant in hearing her diagnosis and saying that she wanted the treatment.  I was scared, but I supported her choice.  In retrospect, I see I could also have delayed and she would have forgotten.  But I felt it was not my place to make that decision for her.  Today I would make that decision for her.

After the fall she was in the hospital 5 days and experienced a terrible episode of hospital delerium.  She has been below her baseline cognition ever since.

She spent 2.5 weeks in an acute rehab that helped her tremendously physically.  Her gains in strength and walking ability lead me to decide to bring her home.  In addition to that, while at the facility she would forget almost every night where she was and why, all she knew was that I was not there.  It was heartbreaking.

She has been home 1 week.  She walks everywhere she needs to go, responds well to PT and continues to gain strength.  I split her time between her home and mine so my kids have thier house to themselves during the day and I have an aide at her house during the day with her.

I agreed with my kids we would give it 2 months and see if her cognition can catch up with her physical gains.  If not, I have a care facility lined up, a social worker, and a plan for her going in as private pay with a transition to medicaid.  

She asks me how to sit down and how to stand up, what direction to walk.  She does well with the aide, but I suspect will never live unsupervised again.  I'm glad I have this time with her, though, and every week farther from covid, I hope will be more likely when I place her it will be with immediate access to visit her.  Unlikely I know... 

I've been reading here since early last summer.  Thank you.

mommyandme (m&m)

Thank you for this update!  Please continue to share your experience with us, please?

jfkoc

Yes, thank you for the update.

vtgsell

When I moved my mom to my state, I thought that we would get a doctor who would see what I see in her.  That doctor would explain to my mom that she needed my help, and with that my mom would allow me  to help without being frustrated by my assistance in her affairs.  

One of the most important things I've learned from this group is how wrong my way of thinking was back then.  That helped me get past my own frustrations with trying to help as well as the guilt of having to be sneaky sometimes.  I learned to step into her reality, never correct, and to find ways to boost my mom's happiness through agreement and support.  And to do what I need to do to keep her and her finances safe.

I wonder if others have seen this with a loved one who is still verbal and communicates well?: My mother cannot articulate pain and discomfort.  Her demeanor changes drastically when she is uncomfortable, but when asked she will deny pain and discomfort for any type of direct question I attempt.  I'm learning to try a pain reliever (as prescribed by her doctors) when her demeanor changes and it seems to be helping.  This new loss of ability was a surprise to me so I've been slow to translate it.  

Thank you for any advice.

M1

Sounds like your instincts are right on target. My partner also has chronic pain from lifelong severe scoliosis, and many times I can tell when she's uncomfortable without her saying a word. Glad your mom is doing better and nice to hear the update!

abc123

Hello & Welcome vtgsell,  Thank you for the update on your Mom. It’s so difficult to have a LO with dementia. My Mom was diagnosed about 8 years ago with Alzheimer’s. Just about the only thing she says these days is I’m hungry. You have already made some very wise decisions for your Mom. I think she is blessed to have you as her care giver. I wish you both the best.