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!

Hospice is good when needed but not in Mom's case...

Mom continues to be the same - good vitals, eats well, happy to sit, watch and snooze.  Holds her baby all the time and, as I found again today, is very surprised at the weight of a real baby when she has the opportunity to hold one.  :)

Enjoying her great granddaughter again - and boy is she heavy!

I continue on my endeavor to minimize her expenses without compromising her care and happiness.

I finished the audit of her ALF expenses and found only a small error over the course of the three years.  It was recent and just an oversight.  Hospice took over bathing Mom and the ALF forgot to remove that from the service plan.  They were very responsive to my concerns and they are crediting the charges.

As I mentioned in a previous post, I had the oxygen machine returned.  Mom had never used it and my research revealed that there is now a monthly oxygen charge whether it is used or not.  It used to be that charges were for actual use.  Big change!

Looking further into the charges and services provided by hospice, I was shocked to find claims submitted to Mom's insurance company in amounts between $3,400 and $3,800 a month!  Oh my goodness!  They check her vitals weekly and bathe her twice a week.  She takes no meds and requires nothing medically.  What in the world are we paying for??

I'm still trying to find that answer but while I'm waiting for an itemized bill, I've asked the ALF to see if there are any services that hospice provides that they can't.

It would be different if Mom had medical issues other than the possibility of a hemorrhage that gives her no pain.  Hospice is not with her 24/7 like the ALF staff is so the likelihood of them being on site if Mom hemorrhages is slim to none.  It is far more likely that anything that happens will be handled by the ALF staff and Mom is used to them.

While hospice is a good thing in many cases, Mom just isn't one of those cases.  I anticipate eliminating their services in the next couple of weeks.

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.

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...

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!

The saga of the wheelchair and hospice continues…

As you can imagine, Mom did not understand that she needed to stay in the wheelchair even after I told her it was hers and it would be better for her feet to be elevated.  A couple other things happened along the way too.

In my last update, I mentioned that my husband adjusted the leg supports of the wheelchair.  They went up and down and he had adjusted them for the length of her leg.  It was great!  That didn’t last long…

At my next visit, the chair was in Mom’s room and the legs supports had been removed.  Mom was sitting in the living room in her normal chair with her feet propped up on her stool.  Evidently communication was not what it should have been among the various shifts and the word had not been spread that Mom should be in her wheelchair as much as possible per the doctor’s orders.

In addition, when I went to get the chair and put the leg supports back on, someone had over extended them and they would no longer adjust up and down.  Back to the drawing board!

Tina, Mom’s former caregiver, happened to be there to visit and we spent a long time talking about the recent diagnosis and the issues with the wheelchair.  The director happened to stop back and Tina, the director and I spent some time talking about next steps.

So, I brought the issue to the attention of all the right people and they sent it up the flagpole to supposedly the right hospice people but two more visits and the leg supports were not fixed and Mom was not yet spending enough time in the wheelchair.  This time the director sent word up the flagpole herself and a new wheelchair arrived that day.

There was still the issue of communication among the shifts.  Mom was being handled differently by the various caregivers and I soon found that her normal caregiver, Melissa, was getting mixed messages.  On my next visit, Mom was not in the chair and could barely stand.  I got the wheelchair, installed the leg supports (that had again been removed) and with the help of the hospice aide, got Mom set up in it properly.  When I took Mom into lunch, I asked if she could stay in the chair to eat and Melissa was sooo happy!  She had really been concerned about Mom’s difficulty transferring from chair to chair and wanted to keep her in the wheelchair but wasn’t sure it was okay.

You may wonder why I would want to keep her in the wheelchair if she wants to walk.  My friend, an RN, explained that in Mom’s condition, the goal is to keep her in the wheelchair enough that she forgets walking.  I was already concerned that at Mom’s age, dealing with cancer and dementia, the last thing we need is to add the complication of a broken bone.  We’ve been lucky so far but we can’t guarantee that Mom will continue to bounce.

Have I solved the issues?  No.  Melissa told me that she puts the wheelchair in front of Mom and sometimes Mom accepts it because she knows she is in pain.  Other times, Melissa turns to find Mom walking down the hall.

The lesson in all of Mom’s time at the assisted living facility is that the caregivers there will follow the path of least resistance.  It’s important to be involved and keep a close eye on your loved one in any facility.

When she first arrived, it was bathing.  They would suggest but wouldn’t ensure that it happened.  I had to step in and do the bathing myself before they took it seriously and made it through Mom’s objections to her acceptance.  There were more bumps with a change of caregiver but again I stepped in and it smoothed out.  Mom has experienced another change with hospice.  A hospice aide now comes in to bathe her and although Mom has complained, Arlene has gently moved her through the process each time and eventually Mom will complain less.

There have been other things Mom has railed at but they were less important.  You have to pick your battles.  Who will win the wheelchair battle?  Only time will tell…

Mom holds the baby as Arlene dries her hair after her shower.

Nice and clean!  Mom felt the baby's toes and said she was nice and warm in her blanket.

 

Wheelchairs and Dementia Oh My!

Mom keeps my life interesting!  J  Yesterday evening I received a call from the home.  The nurse, Mary, said that she found Mom sitting on the floor in the doorway to her apartment.  Actually, she saw legs on the floor and immediately thought, “That’s not good!”  Mom was sitting on the floor with her legs out in front of her.  She didn’t remember falling but you have to wonder how she got there.  As I’ve said before, it’s a good thing Mom bounces when she falls…

My husband and I visited today and found that hospice delivered a wheelchair and a commode.  Mom was sleeping in the living room rocking chair she sees as her own.

Although I know what hospice does, I wasn’t sure how the transition to hospice worked within the ALF.  While I left my husband with Mom, I took a walk out to see the nurse to ask.  Mary was on duty again and very helpful.  Initially, she explained, Mom would be encouraged to use the wheelchair.  They really would like her in it with her feet up but they don’t want to upset her.

I thought it might help if I encouraged Mom and Mary said it would be very helpful.  Thank goodness my husband was there!  He put the leg supports on for me and adjusted them for Mom once I got her in the chair.

With Mom on her new mobile throne, we spent the next hour taking her for a ride around the facility.  She liked it and especially her chauffer.  Steve’s a good driver!  J

Steve chauffeured her in 2010 and she enjoyed it again today.

During our walk, we stopped by to see Mary so I could ensure we had the wheelchair leg supports set properly.  While there, Mom’s caregiver this afternoon, Megan, told me that they had been trying to encourage Mom to use the chair but she would refuse and start walking.  They followed her with the wheelchair and she would finally sit down in it when she couldn’t walk any more.  She would then tell Megan, “Oh that feels so good!”  Unfortunately, she would soon forget, stand up and try to walk away from it.  It speaks to their concern for her but it’s really comical to envision them following Mom with the chair hoping she will sit!

I spent some time explaining to Mom that it was her new chair and that we really wanted her to keep her feet up.  She was so cute.  She looked at me and said, “I’ll have to learn that.”  That’s the problem with dementia and Alzheimer’s.  At a moment in time, they can say yes, but just a moment later it has left their mind.  They literally live in the moment.

I know how much Mom needs to use the wheelchair.  She has fallen twice in the last few days because her feet literally cannot hold her up.  She is dragging one leg so badly that the sole of her fairly new slipper already has a hole in it.  I have had to lift her from her chair, her bed, the toilet.  I can get her to her feet and she can stand but her steps are difficult, more difficult than ever.

As we were leaving, Mom had forgotten and was trying to figure out how to stand up.  I explained again that it was her new chair and why she needed it and Megan took over to keep her occupied.  I checked in after dinner and Mary said that Mom was still in the chair and doing fine.  I know there will be ups and downs but I pray God will watch over her as she “learns” this new habit.

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!