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.  :)

What’s really needed as Mom turns 98?

Last weekend we had an open house at the ALF for Mom’s 98^th birthday.  She was thrilled to see everyone and definitely enjoyed her ice cream and cake!  The day was sunny and bright and although it was too chilly for her to go out in the courtyard, we were able to keep the door open and family members were able to check out the facility’s courtyard and enjoy the sunshine.

Leading up to and now after her birthday, I can’t help but wonder what is really needed for Mom.  She spends her days in her wheelchair or her favorite rocking chair holding her favorite baby doll.  She enjoys sitting where she can view the entire room and into the dining area so she can see everyone who walks in the door and what the various workers and residents are doing.  When she is awake, that is.  She snoozes a lot.

Happy day when she gets to hold a great grandchild!

She’s not able to stand for very long and can walk only short distances with help.  That, and the fact that she has forgotten all the ways to care for herself, means she has to have help with dressing, baths and toileting.  At times she even needs to be reminded how to eat.

She’s definitely where she needs to be – in an assisted living facility where they help her with all those “activities of daily living” and understand that her memories are fleeting.  Her memories come and go from moment to moment but she is happy in her “home”.

Living in a facility is very expensive whether it is a nursing home or an assisted living facility.  The decision to place a loved one requires a lot of financial planning and quite often funding from Medicaid.  Not all facilities accept Medicaid and we knew Mom’s did not when we placed her there.  We had to plan for Mom’s expenses to be paid from her income as Daddy’s surviving spouse.  We really like the facility and so does Mom so as time goes on and fees rise, it’s our job to find ways to keep her there and also watch over the expenses she is charged to make sure they are needed.

Late last year I submitted paperwork to the VA to apply for Aid and Attendance benefits for Mom.  As the spouse of a veteran who served during a war (Daddy was in WWII), she is entitled to a monthly benefit.  She received her first payment on April 1 and while it is not a large amount, it helps.

I’ve recently audited the charges from the ALF and my next step is to look into hospice costs.  When hospice was first suggested, it was because there was suspicion of a problem in her abdomen and finding the mass set the hospice wheels in motion.  It seemed at the time to be initiated for a good reason and I was told that Medicare would pay for it all.  That might be true for most but as it turns out, not for Mom.  Daddy was a teacher and she is covered under his medical as his survivor.  The only Medicare they were entitled to was Part B (physician) which doesn’t cover hospice.  The medical plan is actually the primary payer for Mom’s hospice expenses.

Here we are, seven months later and there has been no change in Mom’s condition.  It fluctuates as it always has but nothing out of the normal range.  She’s not in pain, not on any medication and they’ve put an oxygen machine in her room that she has never used.  Her vitals are always good when the hospice nurse comes once a week.  I know she has a ticking time bomb in her abdomen that could hemorrhage at any moment but does that really require more watching than she gets from the ALF nurse and aides?  My siblings and I joke that Mom will still be here to see 105!

It’s possible that the hospice expenses are less than if the same services are provided by the ALF so it may make sense to have hospice overseeing her care given her condition.  It’s something I will begin investigating this week and checking to see if Mom needs everything provided – I’m thinking the oxygen can go if nothing else.

Check out your hospice provider! Are they covered under your plan?

Mom was put on hospice in September.  At the time, her assisted living facility offered their parent company’s hospice services and I thought that sounded easy and that communication would be improved because they were under the same umbrella.  There were hiccups along the way but my job is to straighten it all out and straighten I did.  The train appeared to be running smoothly on the track.

Suddenly this week, we experienced a derailment!  On Monday, December 30, I received a call from hospice saying there was a problem with billing.  They had not been able to submit any billing for the services.  I was told that they would look into it and find a new hospice provider and it would be a seamless transition for Mom.

On Tuesday morning, December 31, I received another call stating that Mom’s insurance provider was indicating that Mom’s coverage ended that day.  Having worked at a health insurance company for 20+ years, I said that was correct and if you call tomorrow (January 1) they will also say coverage ends as of December 31 – of 2014.  She was trying to discover what hospices were participating providers for Mom’s plan.  Anticipating that, I had already looked and was able to give her the name of a hospice that was covered.

Maybe I was being naïve but in all my years of working in the health insurance field, I have never known a provider of any kind to begin treatment without checking to ensure they were a participating provider and would be paid for their services.  Evidently I just found one that doesn’t…  You would think that it would have taken less than three months for them to realize they were unable to submit a claim?

Just as I was sitting down to eat lunch that day I received a call from the new hospice provider.  The prior hospice provider’s three month oversight suddenly required an emergency on my part and the part of the new hospice provider.  I was asked to squeeze in a trip to Mom’s to sign papers prior to my commitment to my grandchildren that afternoon for New Year’s Eve.  Lovely!

The changeover was much more relaxed.  The first day with the first provider I felt like a train was running over me – not because of Mom’s diagnosis but because of the number of stressed out hospice people all there talking to me at once.  I went home exhausted that day!

This time Mom and I sat with one nurse and I signed the papers, provided Mom’s medical ID cards, and we talked about the calls I would receive over the next few days from various people who would be visiting, checking and helping Mom.

I’ve received those calls and will now need to keep a close watch to ensure things are going smoothly again.  Today the question of Mom’s coverage came up again with the new provider.  They said the insurance carrier was stating that Mom’s coverage ended on December 31, 2014.  I assured them that she was covered, checked online and called them back.  I asked what ID number they were using.

The ID number was the issue.  Although Mom’s ID number had not changed, they were still calling in to the automated system with the number given to them by the previous provider.  It was Daddy’s ID number, not Mom’s.  I know if I call the insurance provider, they have Mom’s coverage tied to Daddy because she is still covered under his plan until she passes - even though he died in 1988.  Her ID cards, that I have shared with the ALF, the first hospice and now the second, show her ID number and that is the number that has to be used for the insurance company’s automated system.  Issue resolved…

Wheelchair… Walking… Walking… Wheelchair

I never know what I will find when I arrive at Mom’s.  Some days her wheelchair is in her room or off to the side of the living room and other days she is sitting in it.  I leave it to Melissa and the other aides to keep an eye on her and they seem to have a good handle on how she is doing.

Last week I arrived to find her sitting happily in her rocking chair in the living room, holding the baby.  After a nice visit, I walked her all the way to her chair in the dining room.  As usual, it took her a minute to stand and get her legs under her and it was slow walking, but she did it happily and like it was the normal thing to do.

 

On Saturday, we joined her for the home’s Thanksgiving dinner.  I arrived just before noon to find her in her wheelchair and Melissa had dolled her up and fixed her hair.  She looked so cute and very happy to see everyone!  She ate every bit of her meal and half of her pumpkin pie before she was full.  It wasn’t long however, before we could see how tired she was and that she was trying her best to stay awake.  I finally told her it was okay to snooze and snooze she did!

I arrived Tuesday to find her freshly bathed and sitting in her wheelchair visiting with the hospice nurse.  Mom was running a temperature and the nurse said her heart was racing but you never would have known.  She was smiling and laughing and talking non-stop.  She had refused her breakfast that morning so while it was hard to tell at the moment, it was obvious that she wasn’t feeling well.  It was also one of those definite wheelchair days.  I needed to raise her up just enough to put the alarm under her that goes off if she tries to stand up.  She struggled to get out of the chair even with my help and couldn’t stand.

The difference between good days and bad days is amazing!  I’m just glad she seems happy either way.

While the nurse and I were talking with Mom, the nurse mentioned the possibility of Mom suddenly hemorrhaging.  The doctor wanted everyone around Mom to know that, given Mom’s tumor is bleeding regularly although a small amount, she could suddenly hemorrhage and there would be a huge amount of blood.  She didn’t want anyone to become scared or panic if it happened.

Luckily for me (or not), I have experienced it myself so am aware of what it is like.  My grandma, Mom’s mom, died from a hemorrhage so it evidently runs in the family.  I also know that if it happens to Mom at this stage, it will take her life.  I am prepared and I believe my family is also.

All that said, the next time I see her she will probably be walking again…  J.  I bet Daddy is wondering when she will finally give up and join him!

You think you’re ready, but you’re not…

When I was 19 and nine months pregnant with my first child, my father-in-law (father of my first husband) died suddenly on the operating table at the age of 51.  No one was ready for that!  It was a very painful ordeal for everyone, even me although I had only known him for about a year.  My mother-in-law still had five children at home.  No one was ready…

When Daddy was traveling down that long Alzheimer’s road, I thought I was prepared for his passing.  Just before I turned 33, we were called to the home one night when it seemed Daddy wouldn’t make it through the night.  He did, and it was another month or so before we were called again.  I was handling it fine until he drew his last breath at the age of 71.  I so wanted my brothers to fix it!  They couldn’t, of course, and after spending the day with my siblings handling the needs of the time – preparing the obituary with the newspaper, helping Mom with the planning of the service, etc. – I went home and cried for four days straight.  I wrote the eulogy for the service and cried the entire time I was writing it.  To this day, 25 years later, I can start crying just because I hear a particular hymn or song.  I guess I really wasn’t ready.

Now we’ve been traveling down this long road with Mom.  There have been times when I thought the end was near and I even made the arrangements for her eventual passing, just so we wouldn’t have to come up with it at the last minute. 

Making those arrangements doesn’t really mean that you are ready though.  I talk a good talk about wanting her to be happy and comfortable – and I truly do!  When you come right down to it, even though she is 97 and even though she has dementia, I can bet I’ll be crying when the moment comes, wishing my big brothers could fix it!

Today was just another one of those times when I realize how I feel deep down, beyond reasonable thought.  I was with Mom today as a wonderful hospice doctor examined her.  Dr. T, a very kind and comforting woman, first found that Mom’s lymph nodes are enlarged, especially on the left side, and that is why her left foot is swelling.  Mom was perfectly compliant so the doctor continued the examination and found a mass inside Mom’s vagina.  It was large and it was bleeding.  Dr. T didn’t press further for more information because she didn’t want to distress Mom.  What she found was enough to put Mom on hospice care.

After the exam, I cleaned the blood off of Mom and got her dressed.  As I stood her up from the bed, I hugged her tight as I gave her time to get her feet under her and ready to move.  I took the time for hugs and kisses prior to the exam, to keep her calm during the exam and after.  Mom loves her hugs and kisses!  No time to think about what I was feeling deep down until later, when I was alone.

The good news in all this?  Mom was her usual, happy self!  As we were walking to her room to meet with the doctor, I was holding Mom up as she walked.  She pointed at her foot, which was obviously hurting, and said, “That’s what makes me know that I’m here.”  We both laughed, that, yes, it did!

The other good news?  In a moment of clarity, Mom looked at me while she was lying on her bed and said, “You’re mine, always have been and always will be.”  I was happy to say, “Yes, I am. I’m your baby and always will be.”

 

Are her walking days coming to an end? Is it time for a wheelchair? Hospice?

The path hasn’t been without bumps since I last wrote.  I left my job – my choice – and I guess it was supposed to be because Mom and now my grandson, Hurricane, obviously need me around.

Mom’s showers took a slight downhill turn when I arrived to find her clean but her hair had not been washed.  They told me she cried when she was in the shower and didn’t want to upset her further.  I guess I didn’t understand why they didn’t start with her hair?

I quickly put her in the shower and washed her hair.  She didn’t complain a bit and it was gratifying when she let me know how good it felt when I was massaging her scalp.  I thanked her when we were done and she said thank you right back.  I was able to dress her and blow dry her hair without incident and that was probably the best incentive for her caregivers to ensure they did it well next time.  No issues with bathing since!

Mom’s bleeding continues – better sometimes, worse others – and has prompted a few calls to me.  Melissa, her new caregiver, knows that as long as Mom is happy and not in pain, we’re good.  Other aides are not so sure and insist the nurse calls me to let me know.  Like Melissa, the nurse knows my mantra, but she will call me to make the aide feel better.

The bleeding has prompted another request to have a hospice evaluation.  They want Mom examined to see if the bleeding may be vaginal and if there may be cancer present.  We don’t have cancer in the family but at 97, who knows?  Maybe?  We certainly won’t treat it if it is there.

I’ve just spoken to the doctor and she’s given me a time to meet there for the examination/evaluation.  After our discussion of Mom’s history, she doesn’t think she will need to be invasive.  She doesn’t want to cause Mom undue stress and I certainly appreciate her concern.

I let her know that my bigger concern is the most recent development.  Mom has complained about pain in her feet for years – certainly prior to our trip to Australia with her in 1994.  She has also experienced edema (water retention) in her feet and ankles over the years but if she walked enough, it would subside. 

This past weekend, the aides all noticed that she was hobbling and eventually got to the point where she needed assistance to walk to the dining room.  Between meals, she planted herself in a chair and sat there happily watching what was going on or snoozing whenever her eyelids got heavy.  All the sitting just caused the swelling in her feet and ankles to get worse.

Her hobbling, the swelling, and need for assistance prompted a call of concern from the nurse.  Would I consider an x-ray to rule out a broken bone?  Certainly!  The x-ray revealed a very old fracture of a metatarsal (a long bone in her foot that she may have broken back in the 1980s), a bad case of osteoarthritis and edema.  No new injuries but all good reasons for the pain she feels when she stands and walks.

Is it time for a wheelchair?  A walker won’t do the trick because it’s not balance that is the problem.  She said years ago that she wanted a wheelchair but at that point in time, balance was the problem.  A wheelchair wasn’t necessary then but it may be now.  Pain is the problem and if I can keep Mom happy by getting her a wheelchair, I’ll do it. 

She can enjoy pet therapy while sitting!

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!