The Rehab Facility - First 2 Weeks

The Initial Assessment
We learn that the facility essentially uses the first two weeks to "assess" new patients. It is typical too for it to take a few weeks for a person to get "acclimated" to that environment.

Mom was fortunate and had an empty room for about the first 4-5 days. Then we were very blessed to get a super roommate for her. A charming woman in her 70's recovering from a near death and bout in the hospital and now battling recovery and ovarian cancer. She is very mobile, just very thin and weak. This mobility surely inspires Mom.

Mom made progress as by the second week she was sitting up with assistance and then able to use the walker to walk to the bathroom! We actually could see "HER" in her eyes again!

There were moments of confusion the first few weeks and then the facility wanted to have a

"family meeting"

the second Friday of Mom's stay there. This meeting was attended by the facility Administrator, the Social Worker, the Therapist and the Nurse. Later we had to get the Medicare person in to answer some questions.

They told us that Mom had refused some therapy that week. Once was just Friday (January 23rd) morning when Mom "refused" the occupational therapist about taking a shower. We learn that Mom was confused and thought it was nighttime and said she didn't shower at night. So, that went down as ONE refusal. There are THREE therapists -- the occupational therapist that works with a patient in daily activities like personal hygiene and dressing; then the physical therapist that works her in exercises to rebuild her strength ; then last is 'speech therapist' which also works on cognitive skills and assesses her mental state.

If Mom refuses any one of these therapists 2 or 3 times consecutively, then that therapist will discontinue work with her. If all 3 therapists discontinue her, then Medicare will no longer pay for her to be there. But.....what about "must show progress"? Mom is certainly getting therapy because she is making progress -- Therapist says, "Yes, but she's doing it with the nurses or on her own". Well, what about Mom getting "skilled nursing" too? Well, she's not really - now if she gets a UTI and we have to treat the infection, then that is considered "skilled nursing".

We discuss Mom's mental state and discuss her 'depression'. Well, YEAH, she probably is depressed -- she was driving 5 weeks ago and living independently, her hair hasn't been done in over a month and she thinks she's dying and she's on all kinds of medicines. So, they are going to start her on Remeron which is an antidepressant that also stimulates appetite. It will take 2-4 weeks to know the affect.

Ok -- so if she does not participate in therapy but we're starting her on an antidepressant -- does that mean we get 2-4 weeks to see if it works? Well, no. So starting her on an antidepressant is not considered "skilled nursing"? Nope -- she could take drugs at home.

But - if the facility is going to discharge her, the would give us 5-days notice. If we need longer we could go to private pay @ $218 per day. Oh -- and you would have to pay one month security deposit and first month in advance -- fully refundable though.

Ok.

Off to see Mom and she looked great! Good to see those eyes again. Explained to Mom that should can't refuse these people anymore. She must agree to do whatever they ask otherwise Medicare won't pay. Oh -- and they agreed to let your hairdresser come in to do your hair, since the facility is between hairdressers right now.

2nd Hospital Admission

That Tuesday night, December 30, 2009, my sister and family went to Mom's and convinced her to let them call 911. The ambulance rushed Mom to the hospital and the ER doctor remembered seeing Mom

walk in

two weeks prior. He assessed her and reviewed her medications

sister had the discharge orders that had all the medications listed

and said Mom was severely dehydrated and way over medicated! The ER doctor said,

I want to know who discharged her with this medicine?

Mom was admitted to ICU.

The plan was to not give Mom anything other than occasional Tylenol and fluids and allow her body to process (flush) all the medication. This went on for days and of course there was mention of a pacemaker and Mom still said "no" or "we'll see".

By Friday her kidneys had shut down and her liver was beginning too shutdown. Friday evening we had a family meeting and presented Mom with the facts about her situation and that a pacemaker was the only way to live. She asked three questions:
1. How big an incision and where
2. what would she have to do later -- what would her life be like
3. How long might she live

The first two were easy but the third is anyone's guess as only God knows that answer. Mom agreed to get the pacemaker. The ICU nurse said, "She only agreed to get your sister off the phone" Nope, she asked Mom and Mom confirmed again.

That night they inserted a temporary pacemaker through her groin and she had to late flat on her back until the first of the week. Mom's kidneys were already working once she was back in ICU. Her liver took longer -- it was back to 75% function on Sunday morning.

On Tuesday they put in the permanent pacemaker and continued to 'tweak' her medications for the rapid heartbeat. They told us she would be in ICU another day, then transferred to cardiac telemetry for 2 or 3 days and undergo some therapy. She would then be discharged to a rehab. So, we're thinking transfer would be first of the following week. My sister asked that they make sure to call her before transferring Mom out of ICU so someone could be with her.

Well, Wednesday night (barely 24 hours after surgery) AFTER 9pm they moved Mom to the cardiac telemetry unit -- and naturally did not call anyone. We found out the next morning -- Thursday. We also found the doctor saying on Thursday that they needed to get Mom up and walking as she needed to be discharged. My sister just about freaked out and called me.

Time for Research
We contacted the hospital's risk management OR ambassador hotline OR patient advocacy group and explained that last time Mom was in (2 weeks ago) the hospital discharged her with too many medications that resulted in severe dehydration and over-medication. Now they were talking about discharge again and just the day before they were still adjusting medications for the rapid heartbeat. I DON'T THINK SO! That group was very empathetic and immediately put the cardiac telemetry unit's head nurse in charge of the situation for resolution.

We found that the doctor SHOULD NOT have said what he did and they were not going to discharge Mom before the weekend.

We began working and talking to the cardiac telemetry head nurse and nursing team and doctors. Mom improved slightly but was so very weak she could not even hardly sit up. This was a woman that had driven herself to get her hair done just 3 weeks prior and now she was in a hospital bed and could not even sit up without assistance.

January 9, 2009 - notes (personal thoughts) while with Mom in the hospital

Mom is in the hospital and says she is 'miserable' she said

"don't ask me to explain it i can't i just feel bad all over i feel exhausted"

The staff in the hospital are now trying to be very helpful and sympathetic. Yesterday though they were doing nothing for her and were talking discharge. this morning i called the "ambassador hotline" and said we needed time to speak with doctors and understand what is going on. I said that on 12/23 she was discharged with meds and then on 12/30 911 called and she was severely dehydrated and over medicated and i would be darned if they were going to discharge her without ensuring meds are right this time. That snapped them in gear and doctors responded. head nurse of cardiac floor talked to me and was so sympathetic she lost her dad last year and still hurting and totally understands the need to care for our parent!

Mom was so tired and couldn't sleep so i got them to give her sleeping pill. It just kicked in and now she is sleeping hard. They are moving us to a private room soon (its 11:30pm) so maybe I can get a few hours sleep before morning.

Just before the pill kicked in mom was blaming "them" saying they didnt care and i tried to explain that they were trying. She said "i can see you if you were like this you would have already laid a cussing on them" :-) yea maybe but i sure hope not! I hope i keep my trust and understanding of people all my life. I know i have it now at 50 and i know mom has never trusted anyone :-(

i love my mother but i am not her and she is not me - we are two entirely different people.

i pray her time comes quickly and the suffering is over soon. shes so tired and she seems so much like daddy did almost looks like him and talks like him. is he here?

January 10, 2009 -- more personal thoughts while with Mom in the hospital:

6:30am

just moved to private room - mom slept thru it. it is not the best room but don't have to worry with anyone else coming in and there are three chairs.

when nurse came in she said (before the move) that mom's heart rate spiked to 108 and asked was she doing Anything - nope just sleeping. maybe she had a dream.

when nurse was waking her up to give her a pill i said "can you believe 3 weeks ago this woman was driving herself to get her hair done?" nurse said "yea we get some people in here 5 or 6 times and each time they are so much worse. one lady that came in several times just died a few weeks ago". for some reason that really pulled my string and i was hit with that overwhelming heartache again :-(

i noticed yesterday that mom's house had not yet been straightened up - the pallet on the couch still :-( guess i'll try to rapidly address some of that when i go shower this morning. then kids are coming around 11:30 so sister and i can go visit a couple of the nursing homes in prep for discharge. maybe that will happen monday? up to doctors.

i have to go back to work by wednesday and was afraid to tell the boss that i have to take husband to doctor thursday to get staples from his knee replacement surgery New Year's eve removed - hell i've been out 3 weeks! fortunately 4.5 of those were holidays. .

9am

mom was so sweet this morning since she got sleep. She didnt drink much Ensure for breakfast and now back asleep.

doctor (heart) just came by and said her heart rate was regulating fine. her lungs are clearing but he said that could take weeks and requires getting up and moving around. he said she would feel better the more she does and noted she didn't eat breakfast.

she's back asleep now. maybe she'll get more activity later today

Which Facility?
Mom has to be transferred to a rehab facility as most available help for in-home care requires the person to be able to clean and dress themselves. Mom was no where near capable of that, so it was time for quick research to find a suitable and good facility.

There are several websites that provide review information and comparison data on nursing homes by zipcode. This data usually includes inspection results and possibly personal reviews. Important data to us was ratio of nurses and aides per patient and hours per day per patient for therapy and care....in addition to all the inspection results. It takes very little time to tap this resource of information and make an INFORMED decision in a short amount of time -- one weekend.

We chose a facility that was just a few miles from my sister's home and near Mom's best friend. The facility is NOT long term care, it truly is about rehab and Mom's friend spent three weeks there the year before to rehab from breaking her shoulder. Mom's friend even offered to go see Mom a lot if she could get in that facility. My sister and I visited the facility that Saturday and were impressed -- no smells, people looked good -- they even had a neighbor dog visiting :-)

So, that next Monday, January 12, 2009, Mom was transferred by ambulance to the rehab center. At this time Mom was not real aware and slept a lot and very very weak. She was setup in a room that did not have another patient -- an empty bed. We got her settled that day and tucked in for her first night.

..............to be continued................

The Beginning .... of heart failure & some history

History
Mom turned 87 December 22, 2008. About 5 years ago she was told she should have a pacemaker as she was diagnosed with "sick sinus syndrome" -- meaning the heart had poor rhythm or arrhythmia. Mom didn't want a pacemaker....her feeling after seeing our Dad's final journey was a person may be better off is the medical society did not prolong the aging/dying process. Now most know that pacemaker's are pretty easy fix, but Mom was 82 and she just didn't want anything done that would prolong the inevitable. She even received confirmation that her decision was the right one as soon after she made the decision, there was this 'recall' of some pacemakers.

Arggggghhh!

In October 2008 we noticed Mom had this cough that was just hanging with her -- she was a smoker, so we were a bit slow to react. Mom had lost all faith in her general doctor and I don't blame her -- he paid her very little attention. She did finally agree to go and he simply listened to her lungs and wrote her a prescription for a standard antibiotic and some cough syrup

that should not be prescribed for anyone with a heart condition!

. The cough syrup was used only once at it made her loony and should not be prescribed to someone with heart irregularities! She completed that first round of antibiotics, had a chest xray in a few weeks as the cough was still present. She completed the second round of antibiotic (a different one) and then several weeks later went for another chest xray. This time my sister notices something on paperwork about "pneumonia" - hhmmmmph! So, by December, the doctor starts her on a third type of antibiotic and again a brand that should not have been prescribed to someone with heart irregularities! This woman was living independently and driving a couple times a week -- to get her hair done, or pick up food or go to the doctor / pharmacy or maybe lunch with a friend. She was certainly 86 but she was doing "ok" -- but this continued cough and multiple rounds of antibiotics was just taking it's toll on her. Prior to all this Mom only took a multivitamin and baby aspirin per day.

Mom started this third antibiotic on December 18, 2008 -- Thursday. I live about 5 hours away but called her every morning on the way to work and every afternoon on the way home. I knew that Thursday and Friday something was going on because you could tell she didn't feel good. My sister lives near her and also suspected something wrong.

Thursday morning my sister awakes from a dream where our Dad is telling her Mom is going to die that weekend. She awakes crying and distraught.

My sister goes to see Mom that Friday afternoon during lunch and sees her ankles swollen huge -- Mom is a petite and frail little woman. My sister calls me that evening and tells me about Mom and her dream. I recognize this as heart failure and I had suspected since October the cough may really be the start of heart failure. We talk and finally sister rushes to Mom's to convince her to agree to go to the hospital.

The first hospital admission
I guess we have been very fortunate as other than a hysterectomy when she was in her 50s and a mastectomy when she was 70, Mom has been pretty healthy and has managed to stay out of hospitals and away from medications. Well, December 19th Mom was admitted to the hospital's cardiac telemetry unit with heart failure. Mom's heart was racing (120-170 bpm) and throwing blood clots due to the arrhythmia. So, they start her on medications to slow her heart rate, get rid of the fluid build up and thin her blood.

Mom turned 87 in the hospital on December 22nd.

They discharge her on the 23rd with a ton of medications and instructions to have her blood checked in a week for the blood thinner. Oh -- and go ahead and take that antibiotic she started on the 18th since they had created cellulitis in her arm from the IVs. So, we go home with a pill sorter and begin R&R and building a new routine around all these drugs.

By that Friday -- after Christmas -- we realized the skin issues on her ankles are not from the previous swelling but actually from HIVES from that same $@(By that Friday -- after Christmas -- we realized the skin issues on her ankles are not from the previous swelling but actually from HIVES from that same $@($& antibiotic! amp; antibiotic!

Arggggghhh!

So we stop that drug. By Monday she is so weak, but goes for the blood test. They say her blood is twice as thin as it should be and to stop the blood thinner and come back Wednesday.

Tuesday -- the next day -- she is vomiting and has diarrhea and calls my sister. They have to call 911 and have her rushed to the hospital with a heart rate of only 20 in the ambulance!!!

To be continued................