Rehab-Another lesson in Humility!

Okay, we have arrived at the Rehab after our 10 days in the hospital!
I picked this rehab because I knew it didn't stink, it was very clean, and also had high marks on its therapy programs. On Friday, the social worker said she wanted to meet with me and gather all the information she needed. As we were talking, she said that we will have a case meeting on Mom's progress in about 3 weeks. I just looked at her and said 3 weeks (Medicare pays for 21 days-get the picture)?  I promptly let her know that I did not expect Mom to be in there more than a week. If anyone could gauge Mom's progress it would be me. So, I explained to the social worker that I would let her know when Mom was ready to come home. I met with the physical therapist every day. The first day Mom's balance was bad (between being weak, in pain, eating liquids, and not walking much). Each day she got stronger and more balanced.  Saturday afternoon, Larry and I got reprimanded by the nurse for taking Mom for a walk (I just can't stay out of trouble).  We did it because on Saturday and Sunday there would be no physical therapy as Mom was a new patient and all the scheduling was not done yet.  We figured keeping her going was the best medicine.  Obviously, the staff did not feel the same way! 

So, Monday rolls around and physical therapy is going well.  Speech Therapy, on the other hand, not so much.  Mom was not on any special diet at the hospital or the rehab but I could not get anyone to understand that she is much better on solids than liquids.  I had to be at the rehab for all of her meals to make sure she didn't choke to death.  I had spoke to the nurse's at the rehab and explained Mom's swallowing issues and could we please give her real food, but they said I had to speak to the speech therapist.   After being persistent, I finally caught up with the speech therapist who had evaluated Mom. 

Now, remember I have had Mom in outpatient speech therapy for the last 4 months and we have already had a swallowing test done (her swallowing devices are fine) etc....etc...The rehab speech therapist's thoughts were that if Mom choked so easily on liquids, she would definitely not be able to handle solids.  I gave him all the reasons why he was wrong and then asked him if we could go see Mom together with different types of foods to try.  I explained to him on the way to Mom's room about her particular form of dementia FTD, because of the swallowing issue and he had the idea that Mom was in another world because she didn't talk much to him.  He did not understand at first that her swallowing problems were due to her brain not acting on the art of swallowing right away.  Mom's brain needs time to process things, and with swallowing it needs some ques to get the motion going. Before we played with the foods, I asked Mom some questions to prove my point about her intellect and speech.  Next, was food therapy.  So the therapist started with liquids, than progressed to jello, than a granola bar, and finally a banana.  With liquids Mom has to be told to swallow sometimes unless its with a straw than that activates her brain to swallow.  The jello, granola bar, and banana got chewed up and swallowed like a charm.  The speech therapist was a little surprised.  He admitted to me that he did get an education on FTD and he has never had a patient like Mom.  So by Wednesday Mom got to progress to pureed foods (yippee). 

On Friday, the physical therapist and I walked with Mom up curbs, down long hallways, and then getting her in and out of chairs, bed, etc..She was pretty much back to normal.  She still had tummy pain and was still recuperating from the gallbladder removal but she was steady on her feet and ready to come home.  So we made the great escape on Saturday just in time for dinner at the house;  Mom's favorite and real food-pork chops!!!!!

Mom is doing very well and pretty much back to where she was before this all happened.  Mom's disease is progressive.  When something else jumps in like surgery, there is a good chance of the person not coming back to the place they were before the event.  The biggest difference is she is a little quieter.  She's back in Adult Daycare, speech therapy (outpatient), riding in the 68 Stang, smiling, and bopping around. 

These adventures at the hospital and rehab have taught me a couple of lessons:  Be prepared to explain to every medical professional about Mom's disease, so they don't treat her like she's indifferent and/or stupid.  Make sure Mom is taken care of as these places are understaffed and don't get around enough to look in on the patients.  Be gentle but assertive to them to meet your needs.  Let them know when you appreciate them, because some of them are great medical professionals.  And last but not least, I do feel for those of you who are unable to be close enough to know that your loved one is being taken care of and not overstaying their welcome because they have no one to speak up for them or they have wonderful insurance benefits!!!!

As always-Be Happy and Hang Tight!

Hospital/Rehab-a lesson in assertiveness and patience!!!!

So are you with me?  I'm not sure I am.  I have the permanent cast on now for 3 days and then comes Mom's problems.  Its Friday night and Mom is having stomach problems (will not go into detail).  Saturday rolls around and Mom is still having stomach problems but is now pointing to her stomach and letting me know it hurts.  Sunday rolls around and things are getting worse not better.  Its very hard to gauge a person's pain when they cannot come right out and tell you.  By knowing her facial expressions and normal routines (mentally and physically), I can usually know something is going on.  So I call the Dr's. office. I explain all the symptoms and the Dr. says I should take her to the emergency room to get checked out as we were both concerned about dehydration.

We get to the emergency room and I already know they are going to keep her.  She was somewhat dehydrated and her stomach still hurt.  They did an ultrasound that night which showed nothing.  On Monday, it was decided that a colonoscopy would be done because of one of the symptoms she was having.  The colonoscopy turned out fine-spastic colon and non- cancerous polyp-Yes!  Dr. says Mom may very well go home Tuesday morning.  Tuesday morning comes around and Dr. calls me at 7am and says Mom is vomiting so she won't be going home.  We had the same Dr. who did the colonoscopy do the endoscopy (I asked for him).  Unfortunately, we could not get it done until Wednesday.  Test results came back with an inflamed esophagus and an ulcer-Yes we have gotten to the problem!  So, we get to escape on Thursday with new medications and diet restrictions-not so fast! 

Thursday morning rolls around and Doc calls me again around 7am (she called me every morning that Mom was in the Hospital-Thanks Doc with gratitude), says Mom's liver count is extremely high and that she won't be coming home.  At this point I am tired, easily agitated, running out of patience, and wanting Mom home.  Now, poor Mom, the whole time all this is going on they won't give her anything but liquids-Mom likes solid food! She chokes easily and holds liquids in her mouth, but only liquids.  I tried to tell them to let her have regular food-to no avail! They did at least have her up and walking around with a physical therapist every morning, but she was getting weak eating liquids and laying around.  So the Dr's. put their expertise together and decided we are going to get a CT Scan of Mom's abdomen.  This happened on Friday.  We get the results very late on Friday and Dr. calls me that night after conferring with the other Dr. that Mom has gallstones.  Now, Mom has been prone to kidney stones throughout her lifetime and both Dr's. knew this and the emergency room did too.  So looking back, we could have discovered this on Sunday night in the emergency room had they did a CT instead of an ultrasound.  As I look back on all of this, I try to be grateful, because now I do know a few more items that need attention on Mom's behalf. 

So, what's next?  Surgery.  I told Mom she just wanted matching scars!  We could not get surgery scheduled until Tuesday.  So there was poor Mom drinking her food and bored as heck!  They still would not give her solid food!  The surgeon came out and talked with me about the gallbladder removal.  He said he removed a stone the size of a dime with her gallbladder, so Mom got a little bigger hole in her.  She was pretty much out of it until Wednesday afternoon.  Mom's Dr. asked me if I wanted to take her home or have her go into a rehab. center for a while.  Mom was weak and in pain and I was in a cast.  I told Doc rehab.  I needed Mom to get her strength and balance back.  I figured a few days and she would be home.  I asked for a specific rehab.  Mom got transferred on Thursday to the rehab.

I learned through this experience that I have many concerns, number one being that most medical professionals do not know what FTD is. They think Alzheimer's.  They automatically assume that Mom does not understand what is going on because she does not talk much or they are too busy to wait for the answer. What scares me is Mom is so quiet that she will not let staff know what her needs are. I decided after this ordeal that if I ever have to place Mom in a facility that she will go down quickly. She would be the quiet one that never gets out of the room, but would be the staff's favorite because she does not complain and smiles all the time! 

So until next time and the rehab story-Be Happy and Hang Tight!

We are back!!!

I really missed my blog!  The last three months have been full of laughter, tears of joy and sorrow, and quite the education.  This blog will be a little of a catch up and not my typical humor.  But the humor is coming back-stay tuned!

Back in June, I had some female surgery which hurt for awhile number one, and number two affected my care giving.  Could you imagine no lifting for 6 weeks or driving for 2 weeks as a caregiver and homemaker?  Well, me being the good patient I am, I did not follow direction from the Doc, but did things as I felt I could handle them.  The first couple of weeks were the roughest by far, having to depend on the boys and Grandma.  Grandma was great with letting me rest at the beginning and doing the laundry at almost 94-God Bless you Grandma!  Husband and son did the best they could with work, college, lawn, cooking, and housekeeping duties.  My biggest complaint was it didn't get done in my time!  Thank you boys!  So other than feeling incompetent, isolated (my fault), and restricted, it all worked out.  Everyone is still alive and breathing!

So then in July, I decide my medical deductible has been met and I was also having problems with my left hand for the past few months.  I went and saw an orthopedic hand specialist and find out I have osteoarthritis!  I look at him and say "I am a little young for this, am I not?"  And he said, "No, its genetics."  Yippee!!!  So I received my first cortisone shot, which I yelped like a puppy and hoped the shot would do the trick!  About 3 weeks later my thumb was worse than ever.   Back to the Dr. I went.  I knew what the outcome was before I even got there-surgery.  So on a Wednesday, I went under the knife again for a lapraplasty on my thumb and oh while we were at it, a carpel tunnel release! 

I really think the hand surgery was much more painful than the female surgery.  I am right handed and the surgery was on the left hand, but you have no idea how much you use both hands.  I was in a temporary cast for 1 1/2 weeks until the stitches could be removed and then in a hard cast for 3 more weeks.  Now, taking care of Mom was almost impossible, I could hardly take care of me.  I have home health aides and Mom goes to adult daycare on the weekdays but I feel I take the best care of Mom as far as keeping her clean.  Mom and the one-armed bandit made it through with several trials and tribulations! 

Just after my hand surgery, within a week, Mom ended up in the Hospital!  To be continued-until then Be Happy and Hang Tight!!!!

Keep coming back as we will be on a blog streak to play catch up!