27 years ago a journey ended…

It was 27 years ago today that Mom’s journey with Daddy, their life together, ended.  The “till death do us part” became all too real.  They had lived through so many things together.  Their teen years with school and church activities, their marriage and moving away from family for Daddy’s job, the separation of World War II, settling back home again to raise their five children on a small farm and so much more.

The majority of their life together held much of the “in health” portion of their marriage vows.  There was very little of the “in sickness” part.  Mom had an ovarian tumor that, once removed, led to our family of five children, but otherwise there were just little backaches here and allergies there.  Daddy never missed work other than a short fight with an unfriendly kidney stone.  Sad to say but I think I brought more doctor visits into their lives with my once a year bouts of bronchitis than they ever had to deal with themselves.

That all changed when Alzheimer’s slowly drew them deep into the “in sickness” part.  When Daddy first retired, he was forgetting things but he was still himself.  His quiet, deep love for his God, his family, his friends and his life was still evident. 

They took time to travel – helping move my little family to Montana and get us settled, visiting the next year with my sister and her children, moving my little family back home, camping their way through Canada, and flying to England for the birth of a granddaughter. 

Being at home during that time meant taking care of grandchildren.  Most days they had at least six or eight and sometimes all of them.  I know they had my two and my sister’s four all the time.  There was none of the “spoiling” going on!  I went to work knowing that my children would have the same upbringing I did.  They played all day on the farm but had to behave properly.  They were disciplined but definitely loved.

Five of the six grandchildren that spent the most time with Mom and Daddy.  My two on each end and three of my sister's in the middle.

As time went on, the grandchildren grew and went off to school and no longer needed Grandma and Grandpa on a daily basis.  Daddy’s Alzheimer’s progressed but Mom, learning as she went, dealt with the changes.  Nine years after he retired the life changing moment came.  In the time it took to give Daddy a sedative he went from a physically healthy 69 year old who could still run and jump fences to a man who could no longer walk.

Mom had seen Daddy through so much of the decline but I think God knew that Mom would not be able, physically, to handle the next stages if Daddy’s mobility continued.  So, in that brief moment, He made sure that Mom would be able to see Daddy through the remainder of their lives together.

Daddy went into the nursing home and Mom was with him every day from breakfast to dinner for two years.  She saw that he was fed and cared for and, even when he didn’t know her, her love for him continued.  She truly exemplified the meaning of “in sickness and in health” and “till death do us part”.

Mom has been 27 years without Daddy now.  As her journey through dementia continues, the memory of Daddy is fading.  There are few days now when Mom recognizes his picture.  Despite that, I have full faith that when God is ready to take Mom home, Daddy will be waiting for her and there will be much singing in heaven for their reunion.

That's Grandma, That's Mom...

I arrived yesterday and Mom was sitting in her wheelchair, holding her baby and looking quite perky!  She asked who I was and I told her I am her daughter, Jeannie, to which she replied, "Oh really?" with a big smile.

Since she was in her wheelchair already, we cruised around the halls a few times and she watched as I took down her old torn shower curtain and replaced it with a new pretty curtain with blue flowers.  Once I had it hanging, she declared it "pretty" and we continued our cruising.

We settled after a bit and she told me that "she" would be by.  I thought she was talking about my sister so I pulled out my tablet to show her a picture.  I pointed out my sister, Pat (to the right of Mom below) and Mom told me yes, that was her. 

I continued to go through the family pictures, something I do quite often. This time she identified some, commented on others and a few times I had to keep from laughing.  :)

As almost always, when she saw the photo above, she immediately said, "That's Daddy." The next photo followed and she said, "That's Momma."

The next photo is always the picture below of Mom with her Daddy and Momma. Sometimes she's unsure when she sees it but typically she knows it is the three of them. It was one of those days when she knew.

The next photo sometimes stumps her but this time she immediately said, "That's Grandma."

I continued through the pictures, Mom sometimes reaching out her finger to move the picture around or point to a particular person.  Then I brought up the picture below.

I struggled to stifle my chuckles as she pointed first to me (center front) and very clearly said, "That's Grandma" and then pointed to my sister and also very clearly said, "That's Mom."  I love her!!

Standing up, falling down, edema here, edema there…

Life goes on, even for my 98 year old mom, but not without its ups and downs.  I just received the fourth call in less than a month telling me Mom was found on the floor in her room.  They haven’t seen her fall because it was always at night.  Last night they heard a sound and went in to check, finding her on her side near her recliner and wheelchair. As all the times before, they couldn’t find any injuries and she just wanted help getting up.  Thankfully, it seems she is still bouncing.

Falls during the day aren’t an issue at this point because she stays in her wheelchair or rocking chair in the living room.  She is watched over there and as I’ve said before, from her vantage point in either chair, she can watch everything that happens there including all the comings and goings.  If the activities don’t keep her interest, she just snoozes - by that I mean falling sound asleep.  :)

We aren’t sure what has her getting up at night.  They speculate that maybe she had to go to the bathroom but we don’t know because she has typically fallen by her bed.  Last night she was headed away from her bathroom given where she fell.  If the timing continues, I may contribute it to the cycle of the moon because the falls have occurred within a day or two of the full or new moon.

Floating edema is another interesting thing we’ve experienced with Mom.  Back in the 1970s she sprained her ankle while she and Daddy were camping.  That ankle always had a tendency to swell after that injury.  Fast forward to the last couple years and the ankle was swollen all the time.  Last year when she was diagnosed with a mass in her abdomen, both ankles and her feet were swollen.  The doctor thought it might be an indication that the presumed cancer was affecting her lymph nodes thereby causing fluid retention.

Interestingly, shortly after I bought her Foamtread slippers in May of this year, the swelling went away.  Then suddenly her left hand swelled up like a balloon!  The nurse at the facility initially thought it was cellulitis but we decided that wasn’t the case because the symptoms didn’t mesh.

Over the summer, her feet continued to be fine while her hand would swell and cause a bit of pain here and there, then suddenly, it would be almost normal.  Since the end of September, her hand and feet have been normal.  ??  When I visited the other day, her right ankle was swollen again although just a bit.  It’s one of the mysteries of Mom!

Last weekend a few of us were able to attend the Thanksgiving dinner provided by the facility. They provided a wonderful meal and I watched my sister very lovingly and patiently feed Mom the meal.  Mom can still feed herself but gets confused at times about how to go about it and I know my sister helps her eat when she visits in the late afternoon. Watching them at the Thanksgiving meal, I could tell that Mom enjoys the help and attention and it made me feel good to see the connection between the two of them.

I love the brief moments of clarity…

Mom’s routine continues.  Her aide awakens her in the morning and gets her dressed and then she has breakfast in the dining room with all of the residents.  After that, the majority of the twelve residents gather in the living room for the morning news, exercise and one or more activities.  Mom sits in her rocking chair there with a view of the entire area.  Although she doesn’t participate in the activities any longer, she holds her baby and watches everything happening around her as the morning progresses, snoozing here and there.  Twice each week her morning routine is disrupted briefly for a shower which makes her tired and she snoozes more.

Snoozing after her morning shower.

Lunch time arrives and typically she is ready to go in the dining room and eat.  The times she refuses lunch are very few and far between.  She may be 98 but she still eats well, just small portions.

There are more activities in the afternoon either in the living room or the TV area.  Her preferred seating in either area allows her a view of the comings and goings of the staff and visitors.  It’s very different from when she lived with my brother and later, me.  At our homes she spent all of her time looking out the windows, watching everything happening in the neighborhood.  Now her neighborhood is indoors and has enough activity to keep her interested.

Five o’clock comes and it’s time for dinner.  Again, Mom eats well.  My sister reports that sometimes she has to remind her how to start eating but she seems to take off well once started.

Evening is more time for sitting and watching until it’s time to get ready for bed.  Days flow one into another with the routine. 

While her days may be consistent, we never know exactly what we’ll find day to day.  Mom, for the most part, is past her combative stage, although it will pop up here and there, mainly at shower time.  She is definitely past her anxious stage – at least what seemed anxious for my very laid back Mom.  She typically smiles at everyone and I hear that she is pleasant.  I know when I arrive she is always pleasant.  She just doesn’t always know who I am.

I always carry my tablet and I use it to show Mom pictures of family.  I start with her “momma” and “daddy” because she can always recognize at least one of them, usually both.  I move on to pictures of Daddy or her and Daddy and mention that he is her husband and my daddy with each picture.  I tell her that she is my mommy and I am her daughter.  Her response varies each time but if she didn’t recognize me as “hers” when I arrived, she usually knows by the time I leave.

If things are going well, I’ll move on to pictures of me and my siblings and I go through the names.  I was at that point the other day when, in a brief moment of clarity, Mom looked at me and said, “You were named after my mom.”  Indeed I was!  My middle name comes from my grandma’s middle name!

She is seldom “here” but when she is, it pulls at my heartstrings.

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!

And she sleeps...

When I left to visit Mom this morning, I planned to manicure her nails.  They have gotten very long but I've been visiting with little one(s) in tow and haven't had the opportunity to do the job.  My sister always carries a file and she keeps them smooth but Mom's nails, like mine, grow unbelievably fast.  Must be where I get that trait.

So, I arrived today to find Mom sound asleep in her favorite rocking chair, legs sprawled out in front of her.  It was so cute.  She had slid down a bit and every once in awhile, she would use her feet to rock - just a bit.  I touched her and rubbed her arm a bit, even gave her a kiss, but she didn't wake up.  She opened her eyes at one point and saw me but I don't think it really registered because she fell right back.  All the while, she was sitting right next to the computer and speakers that the RNA was using to play the Price is Right and Who Wants to be a Millionaire with the residents.  She was not sitting in a quiet area! 

I got out the clippers and file thinking that the manicure would wake her up.  Nope!  I did both hands, clipped and filed, and she never opened her eyes.  Changed position slightly at one point but didn't wake.  

As she slipped a little lower in the chair, the RNA and I worked together to lift her and put the chair cushions in their proper place.  Still she didn't wake.  I rubbed her back before leaning her back into the chair.  Still didn't wake.  God love her!  I know I do!

Sound asleep but all manicured!