The lessons we learn…

Many of us probably remember saying things such as, “When I’m a parent, I’m going to do things different than my parents did.”  It’s not an unusual thing for a young person to think when they are upset about being disciplined or being told no when they want to do something.

In my case, I really can’t remember feeling that way.  As a matter of fact, I raised my children the same way I was raised and as grandparents, my mom and dad treated their grandchildren the same way they treated their children.  I really appreciated that when they were taking care of my children when I was working.

As the years went by, I continued to learn from my parents. I learned about loving and caring – something that seems so easy but really must be learned because as children we are very self-centered. I learned about handling money, making decisions, raising and disciplining children, having a good work ethic and so much more. I made mistakes, of course, and continue to but I also was taught to learn from my mistakes – life lessons, I like to call them.

Mom is soon to be 99 years old and she is still teaching me. No, she isn’t who she used to be. I can’t go to her and ask her how to make a pattern fit me properly or how to knit or crochet. That information is all lost now. There are still lessons to be learned though.

I watched indirectly as Daddy went down the path of Alzheimer’s. I’ve been watching Mom journey through dementia. I’ve also watched from afar as my former mother-in-law has dealt, for over 14 years, with the aftermath of a traumatic bleed in her brain. I’ve watched as my husband’s parents have aged.

When Daddy died both he and Mom were 71 years old and Mom was relieved he was somewhere better and no longer experiencing the Alzheimer’s. Although she was ready to join him whenever God was ready, she continued her life and kept busy for many years before dementia set in. Her journey continues with no end in sight but thankfully, she has made it to the point where she is content and happy to just sit and snooze or watch what is happening around her and sometimes comment on it. She still laughs quite a bit.

My former mother-in-law has a different story because at the age of 48, she lost the love of her life, my father-in-law, when he was just 51. The loss was totally unexpected and she still had three of their ten children at home. She managed to continue but once the children were grown, was ready for God to take her. Fast forward to a fateful day that might have been her last but for a friend taking her to the hospital. Suddenly a creative advertising and marketing person had no words with which to communicate and didn’t recognize her own family. It took years to overcome some of it but not all came back and she has been mostly bedridden for over 10 years. Each morning she shakes her fist at the crucifix because she doesn’t know why God is keeping her here.

My husband’s parents also have a different story. My mother-in-law worked for a surgeon for many years and it was a very good thing! She made sure I was taken care of when, shortly after marrying her son, I suffered three consecutive bouts of flu and my immune system was shot. If it wasn’t for her, my oldest daughter’s emergency appendectomy may have turned into a nightmare because it was a Sunday evening and the ER staff didn’t want to call in a surgical team. Mom (my mother-in-law) called her boss, who happened to be the Chief of Surgery, and within a half hour, he was at the hospital operating on our daughter. We have more stories like those and we certainly appreciate her role in them!

Maybe because she spent so many years in the medical field, Mom and Dad (my in-laws that is), in comparison to my own mom or my former mother-in-law, are very dependent upon doctors. Dad has dealt with cancer and heart issues over the years and Mom has had lymphedema for longer than I have known her. As they have aged, the issues have compounded and there have been times when we weren’t sure what the outcome would be.

So, as I watch how four very different people in my life are handling the winter of their lives, I am still learning. I am formulating opinions about how I want my care handled when and if I reach that stage and how I feel about the end of life.

For now, I’m content to leave it all in God’s hands. I’m sure the plan is in place – we just don’t know what it is.

Recap of Hospice Lessons Learned…

As I have said, hospice is no longer a wonderful group of people supporting those that are dying and their loved ones.  Hospice is now big business and most are for profit, not non-profit.  The more money they bring in, the better.  The people working in them may have hearts of gold but they are driven by their corporations to bring in more clients and if it appears they might be needed then they are helping, right?  Important to remember when speaking to hospice representatives:  if they don’t fully understand their services, the charges for those services, and how they will be paid, how will you?

 

The one line that angers me more than any other when talking to a hospice representative now is, “Well, Medicare pays that amount per diem so that’s what we charge…”   It doesn’t seem to matter if the actual services provided warrant the per diem charges. 

Think about it – we hear so much about how long Medicare and Social Security will be able to support the population.  At the same time, corporations have learned to work the system and cause a constant drain on Medicare funds for unneeded services.

So, when considering hospice, first make sure you have answers to these questions…

DOES YOUR LOVED ONE REALLY NEED HOSPICE? 

Hospice is supposed to be called in when your loved one has only six months or less to live.  They are supposed to help you cope with the impending loss and help keep your loved one comfortable until the end of life.

Alzheimer’s and the other forms of dementia don’t run on timetables so how do you know?  Keep an open conversation with your loved one’s physician.  If they have been following your loved one for a long time, they should have an idea when the end game is coming or there is a lot of pain to be managed and hospice would be helpful.   

You don’t need hospice for routine care of your loved one if they are already living in a nursing home or assisted living facility and receive routine care from the staff. For example, Mom takes no meds and has no pain to be managed.  She is still somewhat ambulatory and all of her needs can, and are, provided by the staff of the assisted living facility. 

Hospice provides those services (showering/bathing, etc.) these days and if your loved one is at home, those services may be necessary and much appreciated. 

DO YOU HAVE MEDICARE AND IF SO, DO YOU HAVE THE RIGHT MEDICARE?

Hospice representatives assume if you are 65 or over that you have Medicare and hospice will be covered.  There are many who do not have the Medicare coverage needed to pay for hospice!  If your loved one has never paid into Social Security, nor had a spouse that paid in, your loved one may not be covered.

Daddy is a good example of that situation.  As a teacher, he was considered a state employee.  Neither Social Security nor Medicare deductions were taken from his paycheck.  Instead, he had a pension that would pay instead of Social Security and he had a health plan that would stay with him throughout his life.  Mom was a homemaker but as his spouse, she was the beneficiary of his pension and his health plan even after his death.

Even though I worked in a health insurance company for over 20 years, I didn’t know that Mom didn’t have full Medicare.  I knew she had the health plan, but she also has a Medicare card.  I now know there is a difference between her card and others.  Her card has an “M” at the end of her social security number and states Medical (Part B) Benefits Only.  Because she’s never been hospitalized, I didn’t realize that she only had physician coverage until the bills for hospice started coming in. 

DO NOT SIGN HOSPICE PAPERS UNLESS YOU FULLY UNDERSTAND THE CHARGES!

When I signed the paperwork for hospice, the representative evidently was assuming Medicare would pay and I didn’t know better.  There was a page where she could list the insurance copays, deductibles and out of pocket maximums but she marked them with zeros.  The bottom of the page had a table of services at per diem, per hour or per visit fees but there were no fees listed and the section had a line through it.  Talk about misleading!!

Don’t let a hospice representative lead you by the nose as I did!  Make sure they fill in the actual fees that will be charged and what the out of pocket costs will be, if any.  Know what you are getting into before you sign.  I trusted them and was blindsided.

I don’t want to go without giving an update on Mom.  She’s doing well as always and takes care of her “baby” every day.  She doesn’t always know I belong to her but she’ll smile and loves hugs and kisses.  She’s still happy to see great grandchildren when they visit, too.  :)

Hospice is gone! I just wish I had learned that lesson quicker…

I continued my efforts to investigate the cost of Mom’s care.  As I said before, the facility had just a minor glitch and quickly fixed it.  I then started the audit of the hospice charges of almost $3,800 per month.  My first step was to ask the hospice provider for an itemized bill from the beginning of the year when they took over Mom’s care. 

After more than a week and emails back and forth, I finally received a print out of the charges.  Sounds good, right?  Nope.  Their “itemized” bill just showed daily charges of almost $121 per day for each day of the month.  Oh my goodness!  For that amount, they should have been with her daily for at least half a day!

My next step was to request all of Mom’s medical and care records.  Although they already had my paperwork showing that I have health care power of attorney, they insisted I fill out a form for their records.  I can understand that in other situations but in this case, I filled in my name as the both the requester and the approver of the request because Mom is unable to do that – hence the HCPOA paperwork that was done some years ago.

Once they received the form, they were willing to send me the records and I asked that they email or fax them to me.  My contact came back to say they would have to overnight them because there were more than 300 pages.  When I questioned it, she told me that “there’s been a lot done”.  Hmmm…

So I received the package and reviewed the pages.  It really didn’t take long once I figured out that each encounter generated between 5 and 10 pages filled with the same information.   The actual visits to Mom totaled about 14 a month with individual visits lasting typically less than one hour:

•          Showering provided twice a week
•          A nurse visit once a week
•          A visit from the chaplain once a month
•          A visit from the social worker once a month

So, that comes to about $270 an hour.

As I’ve said before, hospice is a good thing in many instances.  Hospice provides family counseling, medication and case management for the patient, and other services.  For a family going through the journey of a loved one with Alzheimer’s or another form of dementia for the first time, it would be helpful to guide them through the later stages.

For my family, this isn’t our first rodeo.  We lived it with Daddy and Mom, as Daddy’s caregiver, set the best example possible for us to follow now.  We’re ready for what comes whether it be tomorrow or five years from now.  We just want Mom happy and comfortable until that time comes and given that Mom doesn’t take any medication and isn’t having pain from the mass in her abdomen, the care she receives 24/7 from the staff at her home is all she needs.

So, I signed the order today to stop hospice.  Over the past week, after discussions with the management at Mom’s home and her caregiver, I have purchased a wheelchair, a rolling shower commode, and a gel mattress overlay for the bed they will provide for Mom.  I purchased all that for less than 13% of just one month’s hospice charge!

The secret to a long life? Keep getting out of bed…

Mom’s routine has settled again with the new hospice provider.  Stephanie comes three times a week – twice to bathe her and once to check in.  Lea, her nurse, comes once a week to check on her.  The social worker stops by and so does the minister.  The minister does a little service once a month and he has Mom sit right next to him for it.  He knows about her many years of being active in her church and uses that to make a connection between them.  She seems to feel right at home sitting there by him.

Mom has also won the fight against pneumonia again.  It developed at the beginning of January when the confusion over the hospice change delayed the administration of Mucinex to help her fight what started as a head cold.  It took a few weeks but she is doing much better and the cough seems to have abated. 

While she is definitely doing better, I notice that each time she battles something it is taking a little bit more of her.  She spends a lot of time snoozing now, sometimes to the point that you think she can’t be comfortable sleeping so hard sitting up.  She wakes up and talks a little, takes care of the baby she is almost always holding, and checks on what is happening around her before nodding off again.

Mom meets her newest great grandchild.

She still eats well at her meals although she is quick to let them know if there is something on her plate that she doesn’t want.  Much like my 5 year old grandson, she refuses to touch anything else on her plate until the offending food is removed.

The wheelchair has become a regular part of her life and she spends a lot of time in it but she still walks with help when she’s feeling chipper.  She’s certainly not ambulatory like she used to be but she hasn’t decided to give up!  They keep an alarm on her (a box attaches to her chair with a cord that attaches to her clothes) to alert them at those times when she decides she wants to get up on her own.  They recently changed the type of alarm when they found her walking around one day holding the box in her hand so it wouldn’t go off.  Leave it to Mom!  

Watching the changes in Mom’s life unfold, it dawned on me recently that there is a reason Mom has lived such a long life.  Each and every morning, she gets out of bed for a new day.  It doesn’t matter if it is a good day or bad or if she is dealing with a sickness such as diarrhea or pneumonia, she gets out of bed.  I don’t remember a day in my life when she has stayed in bed for any reason.

Daddy was the same way.  He had gotten up every day of his life to greet the new day, good or bad, even when Alzheimer’s was getting the best of him.  A week before he lost his ability to walk and went into the nursing home, he ran a quarter mile and jumped three fences.  It took two more years of greeting each new day in the nursing home, unable to walk, before Alzheimer’s finally wore him down.

I’m thankful that Mom and Daddy gave us that example.  I have been retired since I left work to take care of Mom but I still get up at 6:00 am every morning, Monday through Friday, to start my day and help my husband get a good start on his.  I “sleep in” on the weekends until 7:00 am, sometimes 7:30, but I can’t sleep later because I just feel the need to get the day started.  I hope I’ve passed on that need to get started to my children...

Just can't keep her down...

I know I've been very quiet lately. Needs have changed since Mom is so happy at the ALF and her day to day has settled into a lovely routine. Thankfully her contentment has gotten us through the last couple of months.

Last fall, Mom's new doctor suggested giving her a daily dose of vitamin D. I thought nothing of it at the time and agreed to allow it. It was a bit of a joke that our 96 year old mom didn't need any medications, only a vitamin.

I guess that was the wrong decision. Although I'm sure the vitamin didn't cause the problems that followed, it obviously didn't help because we saw no change for the good.

Very soon after starting the vitamin, Mom developed a mild case of pneumonia. She had quite a heavy cough and congestion and an x-ray showed a small spot of pneumonia in one lung. Given that she got up each day, took part in activities and ate every meal, her symptoms weren't any worse than what she had experienced in the past so we decided to stick with an antihistamine and some Mucinex. The combination worked well and the pneumonia settled down.

Another issue cropped up next.  Possibly because of the meds and/or vitamin, Mom's hemorrhoids started bleeding badly.  That continued for awhile but settled down, interestingly enough, after the meds and vitamin were stopped.

Mom was so happy to see everyone at Christmas!

Christmas rolled around and our family got together at my brother's and Mom was thrilled. Shortly after Christmas, she received her present - a bout of diarrhea. Again, Mom didn't seem to notice, never complaining and going about her days as usual. It made extra work for Tina but as always, she was wonderful with Mom.

I did get in on a bit of the fun but unfortunately my visits were limited during the last few months due to a knee problem and an unexpected surgery on the same. I'm thankful every day that Tina is taking care of Mom so I don't have to worry but I'll be glad when I can get back to my normal visits.

Another little tidbit to think about if you have a loved one in an ALF that charges based on services needed - after a few weeks of the vitamin D, I received a call from the Health and Wellness director at the ALF. She was concerned about the bill because the addition of the one pill - Mom's only daily medication - they had to charge a medicine charge of $16 a day. Not for the pill, that's billed by pharmacy company. The charge is for the nurse keeping track of it and providing it daily. Having seen absolutely no change in Mom while she took it - other than the pneumonia - we decided to drop it.

You would never know she's been sick!

Vitamin D Deficiency? Banking on those genes...

I received a call the other day from a doctor - Mom's new doctor.  I was surprised!  He actually wanted to chat a minute about Mom.  Wow!

He had just seen Mom for the first time and wanted to ask about the incident of swollen ankles he had seen in the files.  I explained that they swell when she doesn't move around enough which typically happens if she doesn't feel quite up to snuff and she just sits in her chair.  One ankle is always more swollen due to a long ago sprain.  The swelling doesn't hurt however and if we get her up and moving, the swelling goes down.  For a 96 year old, I think that's pretty good and so did he.  He commented that she looked great and had good genes.  My typical reply to that is, "I'm banking on those genes" although interestingly enough my grandma died very young when Mom was just two months old and my grandpa and Mom's siblings all died in their early 80s.  Mom obviously pulled the long straw.

He invited me to stop by and see him if I'm there during his normal visit and we ended the conversation.

A few days later I received a call from the home.  Seems the doctor had ordered blood work during his visit and the results had come back.  You would think that at 96 there might be a few numbers that just didn't hit the mark.  In Mom's case, just one.  Her vitamin D level was very low.  Given the heat this summer it was difficult to get the residents out in the sun as much as usual and Mom doesn't drink a lot of milk either so it wouldn't contribute enough to compensate.  I wasn't surprised by the deficiency.

The fix - a vitamin pill.  The only pill that Mom needs at the age of 96.  Like I said, I'm banking on those genes!