In Hospital, What An Experience...

[Nanders]

I fell last Saturday and injured my R hip & low back. Thank God nothing is broken, just soft tissue damage. The whole experience of being in the hospital as a PALS is soo different than before! It’s amazing how many healthcare professionals do not know about or how to care for ALS patients!! They expect you to move & do as ‘normal’ patient and get frustrated and some pull you around like a rag doll when you can’t! And if I hear another person tell me if I try harder or with time I’ll get better or stronger I’ll scream ( if I could ;-) Yesterday a nurse left me after cleaning me up after a bedpan ( so fun with people w/ no patience) she went to go get a new PureWick & never returned. Just left me at the bottom of the bed half covered, not able to reach anything, call for help nothing! I felt totally helpless in that moment like never before. I laid there for 25 mins till my regular nurse came in ( who was wonderful ) and rescued me!
Everyone has an excuse, I got called into another room & forgot, so sorry. The call light was within reach, I didn’t know she couldn’t reach it..
I’m forever grateful for the few amazing people who cared & went the extra mile to take care of me physically/emotionally.
Today I’m being transferred to a skilled nursing facility for rehab in hopes I can get back home with in home care. I’m sure it will be another interesting experience. I’m so happy I have my kids close by to protect & advocate for me. I am blessed..

 

[Nikki J]

I am so sorry. Maybe you can ask for a sign on the door or over your bed In the rehab? It won’t prevent these things but might help? And there are alarms that can be used just by pressing with a foot or a shoulder. Tell the rehab you need one not just for convenience but safety

 

[debwilson77]

Hi, we are in Chandler also. My husband is completely non verbal but people act like he can't understand thing also.

 

[Kristina1]

I'm so sorry you experienced that. How awful. I hope you can go home soon!

 

[Bestfriends14]

Ugh, that sounds so frustrating; I truly cannot imagine. Hoping you get to go home soon.

 

[KimT]

Time after time. I've heard so many similar stories. I'd do what Nikki suggests and also have a handout outlining the things you can and cannot do. I'd make a dozen copies and make sure everyone tending to you reads and signs the outline.

So sorry it happened. Hope you get to go home soon.

 

[lgelb]

I'm very sorry about your fall and agree with having a very simple statement at your door and at bedside. If it's only soft tissue damage, if practical for you, there should be support for a home-based PT regimen + nursing if needed, vs. the rehab stay. I would broach this with your discharge planner as there would be less risk for you, not only in handling, but infection, etc.

Best,
Laurie

 

[affected]

Oh I'm so sorry, it's so horrible isn't it!
I drove bad hospital staff mad, and made the life of good staff wonderful whenever Chris had to be in hospital as I would put up signs, put notices in his notes, and not allow anyone to touch him until they understood.
Most of our rooms here have white boards and I would write all over them too.

Even so, I would feel like I couldn't leave him long as it only takes a moment for someone to start something and then get called away and leave a PALS compromised. UGH

I hope you can get a better start at this new place and have things understood at the start. We get it!

 

[blitzc]

I am so very sorry you had to experience difficulties while having to be hospitalized. It is truly amazing how many people don't understand this disease. I guess it becomes our mission to educate.
I pray that your new facility be a better experience. Blessings for a rapid recovery.

 

[Nuts]

Hospitals are dangerous places for PALS--I am so sorry for what you are going through. In our VA hospital, PALS go into the ICU where the ratio is one nurse to two patients, and still someone (me, another family member, or a home nurse) had to stay with my husband whenever he was there. I love Kim's suggestion about handouts, but you also need large signs in very prominent places. People breeze in and out in a hurry and have no idea what your limitations are. Here's hoping you can get home soon!