For Mom or for Me?

Lately Mom has been sleeping even more and wanting to eat even less. Those changes are a natural part of moving toward the end of a life well-lived.

My sweet Mom is sleeping on the couch. If they allowed her to nap in bed, she might wake up, get up and fall.
As she sleeps more, they will let her be comfortable in bed.

We watched as Mom took care of Daddy through this stage. She was with him every day from breakfast to dinner, feeding him all three meals because he was not able to do it himself. Although deep in the pit of Alzheimer’s the day came when Daddy firmly closed his lips and wouldn’t allow Mom to give him a bite. As it continued, Mom became concerned and allowed them to put in a feeding tube. He eventually began eating a bit again and the tube was removed but that experience told Mom that she would never make him do something again. It was his choice not to eat and she had taken that choice away.

The next time Daddy closed his mouth and refused to eat, Mom accepted his decision. Although she possibly didn’t realize it at the time, his refusal was a natural part of the end of life process. You might think “process??” because I am talking about a living being but the body has its own processes.

The National Institute of Health tells us “People at the end of life sometimes suffer from nausea, vomiting, constipation, and loss of appetite.” They explain further:

“Losing one’s appetite is a common and normal part of dying -- eating near the end of life may actually cause more discomfort than not eating. A conscious decision to give up food and/or water can be part of a person’s acceptance that death is near.

Providing liquids or feedings via tubes in veins or in the stomach does not relieve hunger or thirst, so this is not recommended near the end of life. These types of treatments can also cause discomfort rather than helping the person feel better.”

As the body begins to slow and shut down its normal functions, we can actually cause our loved one pain by insisting that they eat. They naturally have no desire to eat because their body is telling them it is shutting down their digestive system.

It’s hard to understand that our loved one isn’t “starving to death”.  Dignityhealth.org tells us “Remember, the person is not dying because she is not eating. She has stopped eating because she is dying. Starving is an emotionally loaded word that usually refers to someone who wants food and would eat it if he had some. But a person who has stopped eating and drinking has actually simply begun the natural process of dying. These persons rarely feel hungry and sometimes even the smell or thought of food is nauseating. “

So, as Mom is sleeping more and more and eating less and less, it is important to ask ourselves, “Am I doing this for Mom or am I doing this for me?”

Let’s let Mom decide.

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.

The lessons we learn…

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

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

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

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

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

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

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

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

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

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

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

The little surprises…

I’ve been sick.  For over two weeks now I’ve been stuck at home.  It was nothing horrible like the flu but a sinus infection that decided to take my asthma out to play.  That means no visits to Mom for that time also.

This morning I was finally able to visit.  Mom was sleeping soundly in her wheelchair when I arrived, holding her baby doll on her lap.  I gently checked her over, inspecting her hands, her ankles, and rubbing her back so that she would slowly wake up.

When she awoke, she looked at me with that little look that says hello, whoever you are.  She asked me about the baby seemingly thinking I was there to see it.  When I let her know I was there to see her, she shrugged and started telling me about the baby.

She started removing the baby doll’s pajamas so I got out some clothes and helped her put the clothes on the baby.  As we worked, I talked a bit and called her Mom.  Her response?  “Well, I don’t know about that.”  :)

Our visit continued with Mom dozing off and on.  At one point she awoke and I took the opportunity to show her the pictures that I always go through of Grandpa and Grandma and so on.  She knew them right away as she quite often does but today she surprised me!  When I brought up the picture of her aunts, she immediately pointed to each one and said, “That’s Aunt Sattie and Aunt Emma and that's me.”  Wow!  That hasn’t happened in a very long time!

I continued through the pictures and she pointed here and there at herself as a small child.  I couldn’t tell if she recognized herself as a teenager or in her wedding picture.  When I got to the last, the one of our family when I was little, I pointed and said the name of each family member and she just smiled and nodded.  I couldn’t tell if it was registering or not.

A short while later it was time to take her into lunch.  Once there, she was trying to look back at me to see who had wheeled her in so I got down where she could see me and she smiled and said, “Oh, you’re mine.”

The mom I knew for so much of my life has been gone a long time and I miss her terribly but it’s those brief moments and little surprises that grab my heart.

27 years ago a journey ended…

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

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

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

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

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

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

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

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

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

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

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!

She's still walking!

I now take care of my four month old granddaughter every day and yesterday I took her to visit Mom.  Mom was so happy to see her!  She told her, "Grandma loves you!"

We arrived just as Stephanie was getting ready to bathe Mom.  Mom was in her rocking chair in the living room rather than her wheelchair so we stood her up and she walked with Stephanie back to her room.  That was quite a way but I think seeing her great granddaughter put a spring in her step.  :-)

Mom didn't complain about starting the process but once her clothes were removed, she started her normal fussing.  She was shaking her fist at Stephanie and I stepped in, telling her that she had to have a bath and it would be okay.  I started the water and got it warm to show her she would like it.  She calmed down but said she would just leave!  I fell back to a couple of our old conversations, telling her that she could leave when God's ready for her but until then Grandma (her mama) said she had to have a bath.  It doesn't always work but it did again this time!

Although not a long visit, it was a good one.  Mom didn't know names but she recognized our relationship and had lots to talk about.  I love those kind of visits!

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...

She’s still here but it was the first Christmas without her…

Wednesday was hard for me. 

We’ve been on a roller coaster leading up to Christmas.  I received a call on Tuesday evening, a week before Christmas, saying Mom had fallen again but seemed to be doing fine.  The next day, as we were enjoying the birth of our sixth grandchild earlier than planned, I received another call that Mom was complaining of pain.  The nurse had checked her out and Mom had a red spot on her knee but was able to move everything with just a wince here and there.  The nurse and I opted for a wait and see approach because so far Mom’s x-rays have always come back negative for breaks.

Just as we were getting to our daughter’s room to see our new granddaughter, we learned my father-in-law had been admitted to the same hospital on the same day for what they initially thought was gall bladder.

The next few days were busy with my husband and me going different directions.  Me to the hospital for our youngest daughter and her first child or heading home to be with our five year old Hurricane in the afternoons after kindergarten and my husband to work and the hospital to be with his dad or taking care of his mom.  Add in some other activities with our older grandchildren – a choir concert, some other running – and you get a feel for the days.  There wasn’t a way to add in a visit to Mom so I am very thankful my sister stepped and kept an eye on Mom for me.

All the while that was happening we were also getting ready for Christmas with our children and grandchildren on the Saturday before Christmas.  Santa comes early to our home so that our children can visit the other side of their families on Christmas.  I had a rough patch when it looked like our son would have to work but he rescheduled and our gathering went well although we missed our youngest because she was home recovering from the C-section.

The hospital was no longer in play after my father-in-law’s issue was identified and treated and he was able to return home on Sunday so I was finally able to get up to see Mom again.

She was moving fine with no complaints.  They were again trying to keep her in her wheelchair but she was not happy about it.  Evidently they were telling her that her daughter (this time referring to my sister) wanted her in it.  I had to keep from laughing when Mom said in a disgruntled manner, “You tell your sister…”  The rest wasn’t decipherable but I’m betting it had to do with the wheelchair.  J

Christmas Eve came and another chink was taken out of my armor when I received a call from my second daughter.  She had a seizure just as her family was getting ready to celebrate.  She managed to get a couple pictures of the tree before but missed watching her sons open their presents.  We’ve dealt with this most of her life but it doesn’t keep me from wishing I could fix it for her…

Christmas morning was bright and sunny and really cold.  My husband and I went to visit Mom prior to the usual festivities at my brother’s house where most of Mom’s children, grandchildren, great and great-great grandchildren meet for lunch.  We had planned to take Mom again this year but it was so cold.  As it was nearing time to go, I asked Melissa, Mom’s aide, her opinion.  She agreed that Mom didn’t need to go out in the cold and assured me Mom wouldn’t notice.  Another chink in my armor occurred as I made the final decision to leave Mom in the warmth of her home.  For the first time since Mom and Daddy were married, Mom was not at Christmas. 

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!

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.

Decline and the End Game…

I’ve talked about it before – how decline can be achingly rapid or achingly slow.  But, like rust, it never sleeps.  It keeps trudging along, snagging more and more of Mom’s mind and ultimately impacting her body.

Over the last few months there has been a definite turn toward the end game.  She fought the pneumonia last fall and it was the beginning of the decline.  She has no symptoms now but x-rays show a small spot still sitting in one lung.

We kept the medications for the pneumonia to a minimum but they still caused issues with her digestive system and hemorrhoids.  It took another few weeks to get the hemorrhoids under control but it was just getting there when she was hit with the bout of diarrhea after Christmas.  The whole lot was enough to cause damage to her skin which has required treatment with medicated creams.

The next stage was going from continent to incontinent – although sporadically.  As I’ve said before, a person with dementia is like a toddler in reverse.  Mom was lucky enough to be continent to the age of 96, almost 97.  Like a toddler, she knows when she needs to use the bathroom, she just may not be able to control everything the way she did before.  The good thing about dementia is she doesn’t realize it is an issue and has no problem allowing us (Tina or I) to help her.

There are also the other changes happening as Mom’s dementia progresses.  Just before the pneumonia was diagnosed last fall, Mom stopped wearing her glasses.  She said they made her face hurt.  She was still able to read words on the daily news sheet or on my t-shirts and, since she doesn’t always remember what a word means, it wasn’t a problem.  Lately, she has worn them a few times but not consistently.

Early last week she took another step.  She has an upper plate of teeth and when handed a sucker one day, she took her teeth out.  She refused to put them back in and for the better part of the last two weeks she has been without teeth.  This past Monday I arrived and she had both glasses on and teeth in.  Today she refused both and told Tina she didn’t know what to do with them.

Mom’s face is showing signs of the decline also.  Yes, she’s old and wrinkled – she’s soon to be 97 after all!  But the skin around her eyes has been darkening for months now and today I noticed the skin above her temples is beginning to darken while the rest of her face looked pale.  There is also just a touch of blood settling in her hands also.

 

Finally, Mom has moved more solidly into the “who are you” phase.  She doesn’t recognize me as hers and more frequently now she doesn’t understand if I try to tell her who I am or that I’m her daughter.  Luckily, I’m not bothered by it.  Daddy gave us good practice at accepting that.

I’m not saying the end is imminent but I can see Mom steadily making her way toward the end of the game.  And Tina, who has lovingly watched over many making that last journey, also says Mom is declining.  How long?  Only God knows that!

He really does watch over us…

Some might think I am crazy but my first memories involve Mom, Daddy and God.  Sometimes all together as in going to church or getting ready to go to the hospital when I busted my head open on an iron radiator when I was about three.  Sometimes it’s just Daddy as when he came into my preschool class at church to play piano or when he taught me to sing “Jesus Loves Me”.  Sometimes it’s just Mom as when she made me lunch in a lunchbox and we ate it outside on a quilt in the yard because I wanted to be like my big brothers and sister and have a lunchbox or when I played under the quilt frame while she worked on a quilt for one of our beds.

Sometimes it was just God.  Most vivid is the memory of our big old house, built in the 1880s, and how noisy it would get when there was a thunderstorm.  I was so scared of all that noise and the thunder and lightning!  I can remember being as young as three and hiding under the covers and saying a prayer to God, “Please God, I’m scared, could you please make the storm go away?”  I can’t say if the storm went away or if I became peaceful enough to sleep but the next thing I would know, it was morning.  As far as I was concerned, God was there watching over me.  I have carried that feeling throughout my life.

I would not claim to always have listened to Him – sometimes I have made huge mistakes that obviously were not in His plan.  I eventually realize my mistake and, not without trial and tribulation of my own making, I am led back to the path I should take.  I also never ask Him, “Why?”  I figure that’s not for me to know but there’s a purpose to all.

So why is this all on my mind?  Well, many changes have been occurring with the residents at the home.  Over the last year I have watched the steady progression of the disease and eventual death in some, others are following that path quickly.  For the most part, it’s really been a calm ride but every once in awhile there is a resident that acts out and can be a danger to the aides or the other residents.  There have been a few times recently when I have helped the aides as they tried to deal with these situations without anyone being hurt.  I truly appreciate what they deal with on a daily basis!

Still, you probably wonder what God has to do with it.  When Daddy was 69 and far into his journey with Alzheimer’s, he suddenly didn’t know my brother and ran across two fields and jumped three fences to get to our neighbor’s farm and get away from my brother.  He was VERY healthy!  Shortly after that, he checked himself into a local hospital that is known for geriatrics to get some testing done.  A half hour after he arrived he forgot why he was there, wanted to go home and became violent.  They immediately gave him a sedative.

No big deal, right?  Unfortunately, Daddy had never taken any medication so the proper dosage for his height and weight hit him like a ton of bricks.  He was out for the better part of three days and when he woke up, had to be reminded how to chew and swallow again.  Although a week or so before he had run across those fields and jumped those fences, he never walked again.

I don’t think any of us ever felt there was a reason to be upset with the hospital because they had no way of knowing what would happen, nor did we.  I believe that God was watching out for Mom, knowing that Daddy had progressed far enough that she needed more help.  Daddy went directly into the nursing home and Mom spent every day, all day, with him but never had to deal with violence – because he was no longer mobile – and was able to get her rest every night at home.

Do I believe it was supposed to happen that way?  Definitely!