Roles change again…

I haven’t written in awhile.  Mom has neither improved nor declined but continues to be content sitting each day holding her baby.  While that is true, each visit can be vastly different from the last.

Today I arrived after lunch to find her sitting in the rocking chair, not yet holding a baby.  She looked up at me and smiled a big smile and said hello.  We hugged – and she was actively hugging me – for a good minute and when I finally leaned back, she said, “I love you.”  I melted. 

We had a great visit although she was snoozing off and on.  She would talk a bit and then drift off but come back a minute or two later.  Food coma I would say.  At one point she noticed a CD player sitting on the floor beside her chair and started investigating it.  I thought that would be a good time to give her a baby to distract her and as I handed her the baby, she settled it in her arms.

As I drove away after our visit, I did something I do almost every time I visit.  I thanked God for giving me such a wonderful mom and daddy.  As usually happens too, I began to cry.  It’s not a sad cry even though Mom today is not the mom she has been all my life.  It’s a happy cry that I have been so blessed.  I can only hope that someday my children feel about me as I feel about my mom.

While Mom remains the same, other things have changed.  My brother, the elder of us five, has carefully watched Mom’s finances over the years.  Last year, he alerted us that her savings would soon run out and we would have to supplement Mom’s income to pay for her care.  

We could possibly reduce the cost of her care by moving her to a Medicaid facility.  I haven’t investigated it but I think she would probably qualify but moving her would be traumatic and take her away from the staff members at her ALF who care for her every day.  She is so happy and content that we made the decision to keep her where she is.

Time passed and Mom’s last bit of stocks lasted longer than my brother expected.  We actually joked that we would be very happy if Mom spent all of her money before she decided to join Daddy in heaven. 

Earlier this summer, the funds finally ran out.  Mom still has her pension – I may have mentioned at some point that she is an annuity nightmare.  Daddy set up his pension to go to Mom if he passed first.  He did, but I know the annuity companies don’t expect anyone to live to 95, let alone 99 heading to 100!

The pension always more than covered her expenses while she was living with my brother and when she moved in with me.  The savings she had accumulated over the years helped supplement that income when we moved her into the assisted living facility.  With the savings gone, it is time for the tables to turn and now the children will support the parent.

My three brothers and I split the cost over and above what Mom’s pension covers.  My sister took over the purchasing of the incidentals such as Depends, wipes, gloves, shampoo, etc.  There were no arguments or complaints, we just figured it out and arranged getting the payments to my brother so he could pay the bill.  Again, I am so blessed to have a wonderful family!

Helping to pay for Mom’s care has brought another change to my life.  It’s like having another car payment and our budget didn’t have room for that.  The other option would have been to bring Mom home to live with us again but that is no longer feasible.  Although I am in great health, I know that my back – I already have sciatica – would give out if I had to transfer her multiple times a day.  So, I have gone back to work to make the money needed to pay my part.  

Sometimes, especially when I’m working, I wish Mom was in a facility closer to me so I could see her every day but placing her near the rest of my family was the best decision.  My sister and niece are there often and many other members of the family will stop by here and there.  They wouldn’t be able to do that if I had placed her near me.  So, I will be happy to work to help pay for her care and enjoy all the visits I can squeeze in.

Still Alice… Still Mom

I watched the movie Still Alice yesterday.  I read the book a few years ago and while it wasn’t based on a true story, Lisa Genova’s research and resulting story is an excellent first person account of life with Alzheimer’s.  A movie can never catch the full flavor of a book but the movie did provide insight into the mind of a loved one with Alzheimer’s. 

The movie also touched very lightly on the family dynamic – something I’ve learned from firsthand experience in not only my own but others close to me as well.  Seeing how others are handling it, I consider myself a very blessed person to have such wonderful siblings!

Some people seem to think that Alzheimer’s, or any form of dementia, appears overnight.  They say, “It can’t be dementia because she knows who we are” or “He doesn’t have Alzheimer’s because he can tell you what he did today”. 

That’s not the case, however.  Dementia builds up little by little and differently in different people.  I’ve told about Mom’s losses over time such as finding the word she wants to say, forgetting how to sew, and more.  For Daddy, it was forgetting names and missing meetings.  In either case it was nothing noticeable at first and developed over time.

In the movie, Alice was a world renowned professor of linguistics – a lover of words – and the loss of her words was devastating to her.  It was only the beginning of what she would lose and, while the book played it out more completely, the movie did manage to show how the stages progressed.

As you may imagine, the slow progression of the disease may cause family members to disagree about what’s happening with their loved one.  I find that to be a key topic on the support forums and at our local Alzheimer’s support group.  The gulf between the family members can widen and seem impossible to close.

Quite often it is the caregiver complaining that others in the family don’t help or don’t get involved.  The caregiver assumes that no one else cares about them or the loved one and while that may sometimes be the case, I think quite often there is more to the story.

There are also times when a family member is upset that the caregiver won’t discuss the situation with an open mind and lashes out at them so they back away. Again, there may be more to the story.

Neither situation helps anyone involved.  There is probably common middle ground but getting there may be difficult to navigate when the caregiver is in the trenches and the others feel outside and unheard. 

As I’ve said before, my family is great.  I communicate through this blog and when I need to communicate quickly or in more detail, I send an email to them all.  They were supportive when Mom was living with us and continue to be since she has been living at the ALF.  My sister would spend weekends with her when she lived here so that we could get some time away and now she visits Mom several nights a week, helping Mom eat her dinner and keeping another eye on her care. 

Do my brothers visit like my sister and I?  No, but my oldest brother has overall POA and handles all of Mom’s finances and I know all of them will be there if we need them and because of that, I feel comfortable in my role overseeing Mom’s care.  Although I make all of the day to day decisions for her care, I’m not alone in any decision that I want or need help on.  I always know my sister and my brothers are there.

Mom was our example to follow.  She did it well.  She did everything in Daddy’s best interest and accepted it when we had to bring something to her attention.  For example, she wasn’t happy when I told her Daddy couldn’t drive anymore but she had no experience driving so she accepted my opinion and Daddy stopped driving.

I wish everyone’s family would be like mine.  That isn’t the case but I do pray that others will try to find common ground.

She's telling me a great story!

99 Years… and Pennies from Heaven

Mom turned 99 early in the month.
  
I can’t help but think that Daddy has to be wondering when her journey here with us will be complete and she can join him.
  
I know I wonder at times what more I should be learning from her at this point.  There has to be something her presence here is meant to accomplish so I’m always thinking about her life’s twists and turns – or more appropriately now, her falls and bounces - and what I can learn from them.

A party to celebrate was planned for a week later so my husband and I went to visit her on her birthday.  I got out of the car and started walking toward the door when I saw a penny on the ground.  My immediate thought was that Daddy wanted me to give Mom a hug for her birthday on his behalf.

Call me crazy but pennies have a deep meaning for me from my childhood and Daddy has always been a part of that.  He taught me to save my pennies.  I had a little iron bank shaped like a house to put them in and every so often, Daddy would take me to the bank to put them in my savings.  In the years since his death, I can’t tell you the number of times they have appeared on the ground when something was weighing heavy on my mind.

Back in 2010, Daddy appeared to me in a dream very briefly.  He was there just long enough to say Mom couldn’t be left alone anymore.  I thought and thought about that and what we should do about it.  Shortly after, I was driving to the store and made the decision to talk to my husband about leaving my job to take care of Mom.  When I got out of my car, I didn’t take more than a few steps when I saw a huge bunch of pennies on the ground in front of me!  Okay Daddy!  I hear you!

Although he’s on my mind often, I haven’t dreamed of Daddy since that dream in 2010.  There are times when I begin to think that he’s spending all of his time watching over Mom because I go through long stretches of no pennies.  Then all of a sudden there will be a penny on the ground in front of me, calling my name.

Mom enjoyed her birthday party.  We don’t get a huge crowd for it – our family is truly huge – but those that aren’t busy with sports will usually come by.  Enough of them drop by that Mom seems to understand her family is around her.

Mom and Hurricane together again.  She sat beside her cake for a long time before reaching out her finger and getting a scoop of icing.  She must have liked it because she ate a piece and some ice cream then we looked back again and she had pulled another piece over and eaten half of it!

After the party, she said something to me that I hadn’t heard in a long time.  She asked if she was going home with me.  She seemed to want to go.  I assured her she was home but inside I was struggling.
  
As we’ve come closer to the time that we will need to help pay for her care, I’ve thought often about whether or not I could bring her back to live with me.  She’s calmer now and sleeps a lot so seems easy enough, right?

Nope.  Mom needs more physical help now such as transferring from wheelchair to toilet, or bed to wheelchair, etc.  I used to be able to do that but after hurting my back and shoulder last fall, I know I can no longer move her around.

I think God keeps reminding me that it’s not a good idea.  Just when my shoulder starts to feel good, the weather will change or I’ll make a quick movement that sets it to aching. Or I'll hear from the home that Mom was up all night.  Since Daddy hasn’t stepped in to say anything to me about it, I’m thinking he agrees she’s fine where she is.

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!

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!

Spills, Chills and What is the Plan?

It’s easy to see the difference between Alzheimer’s, which is a form of dementia, and Mom’s version of dementia.  Daddy had early onset Alzheimer’s and he forgot how to walk after being given a normal dose of sedative for a man his size.  He and Mom have never taken medication so it hit him hard and it was three days before he was awake and aware.  He forgot a lot in that time and some skills, like swallowing, we were able to restore, but the walking was gone.

When Mom broke her arm, she forgot how to cut the quilt blocks that she had been cutting for years.  She went through a time then when she was losing skills.  Now she has just a few basic skills left – eating, walking and knowing when she has to use the bathroom.  Learning new skills is definitely gone.  Introducing a wheelchair now requires learning something new.  It’s just not happening…

Although the aides encourage her to stay in her chair, Mom will still get up and walk.  Last week, she fell again and hit her head this time.  She ended up with a rug burn over one eyebrow that has scabbed over.  As usual, she was chatty as the nurse checked her over and came away with just the wound on her eyebrow and a bruise on her elbow.

It's small but the scab on her eyebrow is definitely there.

My sister was able to check on Mom right after her fall so I went up the next day and ran into some more fun!  I was greeted with a hug by one of the other residents when I walked in the door and shortly after arriving, I had to take care of Mom in the bathroom.  She has been dealing with diarrhea for a few years now so I thought nothing of that until later when they told me she had refused her lunch the day before but had eaten well that morning.  A few minutes later Mom had to head to the bathroom again and while I was taking care of her, the resident who had initially greeted me vomited in the living room.  Evidently a bug was making its way around the home – and I was sitting in the middle of it!

Falls and bugs are inevitable in any assisted living facility or nursing home.  Having raised a daughter with epilepsy, I know only too well that I can’t stop falls from happening.  There’s no stopping bugs either.  Someone comes to visit or someone comes in to work without knowing they are carrying a bug.  Next thing you know, one of the residents becomes ill – and so it starts.

While I’ve been checking on Mom and following the transition to hospice, I’ve also been checking into the possibility of getting another job.  I keep thinking I need to make some money so I can help with Mom’s bill but every time I think I have a something lined up, there is a new development. 

I worked all summer but then Tina left and I was faced with the transition to a new aide for Mom.  At the same time, Hurricane was struggling with his transition to kindergarten and needed me to perform some Grandma duties.

I was looking at a new job and Mom was suddenly put on hospice and another transition began and is ongoing.  I considered another and then another and each time an issue of some kind popped up. 

I’ve always trusted that God would guide me if I just listen for his plan.  I’m trying very hard to listen now and figure out if I’m supposed to work or take care of my family.  I do hope it all comes clear soon.  Meanwhile, I’ll take care of my husband, watch over Mom and keep Hurricane out of trouble!

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.

 

Things are calming down again…

Several weeks ago, the unthinkable happened!  Tina left to take a job with the County Sheriff’s office.  I dreaded the adjustment period while they find a new team to work with the residents, especially since I’m working full time and can’t get up there more than once a week.  I figured Mom’s “I can do it myself” would come out to play again.

The first week I arrived and Mom had not been bathed.  I was concerned that she had caused a problem but after investigating, I learned that the days were mixed up and someone else was bathed rather than Mom.  I was promised that she would be bathed the next day.  I knew there would be hiccups with the change but I was hopeful.

I arrived for my visit on the second week and again, Mom had not been bathed.  A young man was cleaning her room – and doing an excellent job of it!  I asked if there had been a problem with her bath.  Yep, she refused!  I guess nobody thought through the impact of assigning a young man, however nice he might be, to take care of an ambulatory 97 year old woman…  Although I did tell them if my daddy had been there instead of Mom, I would have been happy to have that young man caring for him.

I quickly requested that Mom be cared for by females only and they promised she would be bathed that day or worst case, the next morning.  In the midst of a very busy weekend, I knew I wouldn’t be able to make it up there again so I asked my sister and nieces if they could help check up on Mom to ensure she was bathed.  Love to them all for visiting and making sure it happened!

Third visit since the upheaval was this morning.  I’m very happy to say that Mom was bathed and eating a snack when Hurricane, my very soon to be five year old grandson, and I walked in.  Everyone was in the living room enjoying a game led by one of the aides.  It was so nice to see everyone calm and content – and all happy to see a little one in their midst.  He was shy but that didn’t seem to bother anyone and Mom was so happy to see him!

He did well and wasn’t too rambunctious but by the end of the visit, I could easily tell we had worn Mom out.

 

Will there be more hiccups?  I’m sure there will be but the good news is that they are trying.  The combination of Melissa and Stephanie today was wonderful and I immediately sent a message to let the powers that be know.  I can only hope that they stick with them or another combination of two people that works as well.

To cath or not to cath…

My recent visits with Mom have been fun and Mom, for the most part, just continues to be her happy little self.

Now that I’m working, I generally visit Mom on the weekend.  Weeknights just aren’t conducive to visits because of the distance, working around dinner, etc.  At the beginning of June, however, we were out of town for the weekend so I didn’t get to visit.

One day the following week I received a call, during my work day, from Mom’s facility.  Mom’s hemorrhoids continue to bleed here and there and that day she had refused lunch, saying that she had some pain and she was indicating her lower abdomen.  Tina alerted the nurse and they called me saying that maybe Mom was holding urine and needed to be catheterized.  There seemed to be some concern that Mom’s organs were beginning to fail and hospice was even suggested.

It was already late afternoon and they had to arrange for a home health nurse to do the cath so I told them I would be there after work to be with Mom during the procedure.

On the hour+ drive up there (rush hour traffic) I was thinking, again, that Mom may be near the end.  I know it would be a blessing all the way around, but I know at the last minute I’ll be looking at my brothers or my husband wanting them to “fix it”, just like I did when Daddy passed.

I arrived at the home thinking Mom was going to look weak and uncomfortable.  Instead, I find her sitting in a chair in the living room watching TV and thrilled to see me.  She had obviously eaten dinner because, on close inspection, I could see some crumbs from her dessert.  The aide confirmed that Mom had eaten well.  Of course she did, she refused lunch!  J

The home health nurse arrived, chatted with us, took Mom’s vitals – which were wonderful as usual – and was ready to prepare Mom for the cath.  Mom said she had to use the bathroom first and did so with no problems.  The usual blood was there (kind of like a head wound, a little blood can look like a lot) but no pain, no complaints.  The nurse used the opportunity to help clean Mom up after and examine her at the same time.  Nothing to worry about and we both agreed that the last thing we wanted to do was bother Mom with an unnecessary cath!

Mom may be old and very tired at times but these little episodes don’t stop her.  A week after my evening trip up there, Tina came back into the living area and found that the wooden bassinet and the three baby dolls that sleep in it had disappeared.  After searching several rooms, she finally opened Mom’s door.  Yep, Mom had somehow wheeled that bassinet out of the living area, down the hall, and into her room without anyone noticing.  She was happily taking care of the babies!

Today my husband and I both went up for a visit.  Mom was so happy to see us but seemed to be more in the “visit” mode.  She had a wonderful smile but didn’t reach out for a kiss and hug so I knew that she didn’t know who we were, just that she knew us.  That's not to say she turned down the hugs and kisses we gave!

Mom talked and laughed for an entire hour.  She makes you laugh even though you have no idea what she’s saying just because she looks likes she having so much fun.

 

At one point in the conversation, she told us that, “Jeannie’s gone away.”  She stumbled a bit over Jeannie but got it out and finished the sentence.  I told her I was Jeannie but she said, “the other Jeannie”.  It may not sound like it would be funny to me, but it was.  I was happy that Mom knew the name even if she couldn’t connect it to me this visit.

So, is the end near?  Only God knows for sure!  We’ll just love her while she’s here – even if she doesn’t know who we are.  J