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.

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.

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!

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. 

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.

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!

So back to food…

The story of food in our family is complicated yet simple.  Growing up, if it was grown on the farm, we ate it.  Daddy planted a huge garden every year, first with a horse (before my time) and later with a tractor.  Mom not only picked fresh vegetables and fruit for our daily meals but canned and packaged more every day to hold us through the winter and to harvest of the next growing season.

We also had a milk cow and raised our own cows for beef, chickens for eggs and meat, and rabbits.  Daddy and my brothers did the butchering and Mom packaged it all up for the freezer.  So between the garden, the animals, the walnut and fruit trees and berry and cherry bushes, we ate well!

As all of us kids grew, married and move out, Mom continued putting up food for quite a long time, even putting up enough that we all had some too.  My girls still like only canned green beans and frozen corn because that’s the way Grandma made them!  It wasn’t until Daddy was too far down the path of Alzheimer’s that she quit but she still provided Daddy with wonderful, well-balanced meals.

The gardening, canning and cooking skills eventually faded in the face of Mom’s dementia.  As I said before, we missed the signs for a long time. 

When we finally realized the situation, I thought I could improve things once she moved in with me.  I was able to give her healthier evening meals but I quickly decided to stick with her preferred breakfast and lunch because I found I had to pick my battles.  Her preferred breakfast and lunch may not have been the healthiest but they weren’t horrible.  So I left those alone and instead fought the bathing and other battles.

What I didn’t realize, until Mom moved to the Alzheimer’s facility and began eating their planned meals, was that Mom obviously has some digestive issues caused by particular foods.  Again, we are in some ways too accepting of our situations.  We knew that Mom made many trips to the bathroom every day – sometimes as many as five times in just a half hour.  We didn’t think about looking at the food she was eating, we just thought she had issues with digestion in general.

Now, after almost a year in the facility, Mom’s aide, Tina, and I have come to the conclusion that Mom has trouble digesting milk in any form.  I can always tell now when she has had some type of milk with a meal because those are the times she is constantly running to the bathroom – even in the middle of her meal.  Most days, however, she is able to have several hours between trips.

Despite the issue, Tina and I haven’t made a recommendation to take all of Mom’s milk away.  After all, she’s 96 now and why would we want to prevent her from enjoying ice cream?

Mom's favorite - chocolate!

If we would have known this years ago – hindsight is 20/20 you know – we could have helped Mom make changes to her diet.  For now, we’ll just try to keep the milk intake to things she really likes.  Like ice cream!

They try to communicate...

Although this is a really large cake, I'll continue my story of food in my next post.  Meanwhile, Mom turns 96 this week.  We had a little party for her on Sunday but I'm not sure that she ever really understood what the hoopla was about.  Life for her is quite often a mystery.

To give you an idea of life for someone with Alzheimer's, there was a video documentary on PBS last week taken in an Alzheimer's care unit and focusing on one particular resident.  I missed it but it is available for viewing online for a few more days and I took the time to watch it there. It depicts the disease very well and gives you an idea of what it is like to have a conversation with someone with dementia. http://video.pbs.org/video/2216780249/

I recently took a seven minute video of Mom but I was unable to upload it here.  In the video, you can tell when she's trying to find words and she rambles.  She actually managed to stay on topic for a good bit of the video but it was very disjointed, she didn't respond to questions, and she is never able to actually get a point across.  It really makes me wish I had a video of her in the past.  She was so full of family history and knowledge of sewing, knitting and more. 

She's here, but I miss her so much...

I'm currently participating in a fundraiser for the Alzheimer's Association.  If you would like to contribute, it would certainly be appreciated by me and all the others dealing with this disease that slowly takes their life away without taking their body.  http://www.alzgive.org/jeannielange

Food can be a sign…

One of the signs of Mom’s decline happened so gradually that even though we recognized a total change in the long term, we ignored the incremental changes as they happened.  Those changes revolved around food.

I’ve mentioned the schedule Mom lived by several times.  When we were little everything thing ran on schedule.  That schedule continued through Daddy’s Alzheimer’s and probably helped Mom care for Daddy during that time. 

That schedule is what we used to gauge Mom’s ability to care for herself as she got older.  As long as she was getting up, fixing and eating meals, and going to bed at a regular time, all was good.  Or so we thought…

What we weren’t seeing were the little changes.  She typically had cereal for breakfast with reconstituted nonfat dry milk.  On Sundays, she would have an egg on toast.  Lunches varied (years ago) depending on what she had and wanted to use up.  She might have a sandwich or she might have some leftovers.  Dinners were small servings of chicken or beef with a vegetable and either bread or potato.  Although Mom never was one to use spices, she always served well rounded farm meals and she continued that practice in her little kitchen after moving to my brother’s.

Breakfast stayed much the same over the years.  She continued to eat cereal and milk but at some point started heating the milk up a bit because it was “too cold”.  That was fine until my brother had to replace his microwave in the few months that she lived there.  She no longer had the ability to learn how to use it.

Lunch became very regimented.  She would have a slice of lunchmeat and a slice of cheese on two slices of bread.  She placed the sandwich in a half sheet of paper towel and put it in the microwave it to warm it – until the new microwave came along.

Dinner was the most interesting change.  Instead of a little plate with separate foods, she began creating little casseroles.  She was so proud of them!  Actually, she would break up a piece of bread in a little plastic container and add other things on top.  Sometimes it was leftovers from my brother’s meals – he didn’t dare throw any food away!  Sometimes it was a portion of a can of stew or soap.  When she first started this habit she would also put some vegetables in the mix but over time that changed.  Her dinners actually became more starch than anything else.  Her little creations were put in the microwave for warming – until the new microwave came along.

Once the new microwave came along, my brother was able to help with the use of it in various ways so that she was able to get her meals.  It wasn’t long after it came along that I started making the trip up to be with Mom during the day and learned firsthand what her meals had become.

As I look back, I realize that Mom was probably malnourished but we didn’t know it.  The story continues next time with how the story of food as a sign continued after she moved in with me.

Signs and (of) Denial

Oh, denial!  It is a stage in everything that we face in our lives, good and bad.  We see the signs of what’s ahead or what’s afoot and we don’t want to recognize them.  We gloss over them or totally ignore them or chalk them up to a “passing phase”.

I know this only too well.  My family is so loving and accepting that my daughter was 10 years old before she was diagnosed with epilepsy.  For years my call to her was “Earth to Jessie” because she was sitting right in front of me and not responding.  Grandma and Grandpa, aunts, uncles and cousins, we all said the same thing, “It’s just Jessie.”

It wasn’t until Jessie was 10 and she had a complex partial seizure lasting about 20 minutes that we realized something was wrong.  I finally took her to the doctor and started the long journey that continues to this day.

Years ago, Daddy realized that memory problems were interfering with his ability to do his job.  As a teacher and head of the science department at a local high school, he was missing meetings that he had scheduled and forgetting the names of his students and co-workers.  He retired at the age of 61 and unknowingly started his journey into Alzheimer’s.

You would think that we, as a family, would learn from the past.  Well, we’re still those “accepting” people that we’ve always been.  Mom lived with my brother for 24 years and during the last 10 or so years there, she began her journey – but we were oblivious.

I can’t tell you the order of the changes because, of course, we weren’t keeping track.  As long as she continued with her normal schedule of eating and sleeping, we figured she was doing too well to need help.  Truth was that things were changing even though the schedule wasn’t.

She had problems with dizziness so we moved her to the main floor to avoid steps.  She developed problems with constipation and talked about it a lot in inappropriate places.  She heard a doctor on TV say that an aspirin a day was good for you so, unbeknownst to us, she decided to take an aspirin each day – a regular one, not a baby aspirin.  Next thing we know she stops going to church because she’s filling the toilet with blood whenever she has a bowel movement.  The list of changes goes on and on but we were all in denial because her schedule hadn’t changed.

Please don’t think we ignored the problems.  I took her to the doctor for many problems and we fixed everything we could – hiding the aspirins that were helping the constipation aggravate her hemorrhoids, getting her on stool softeners, encouraging her to walk around the house to keep moving and eliminate some of her pain caused by sitting too much.  Truth was, though, we were fixing issues but not looking at the overall situation.  She was no longer bathing, her sleep was constantly disturbed, she stopped reading, stopped watching TV, stopped going out of the house, and more.

So, wondering if it’s time that your loved one needs help?  It’s time to dig beneath the surface and punch through that wall of denial.  But don’t feel bad – you’re not alone!

Full moon and a special day no longer remembered…

I arrived at the home today during exercise time but Mom wasn’t there.  She had gone back to her room to put her shawl away but evidently forgot to come back out.  Her door was locked from the inside so I knocked… and knocked… and knocked.  No answer.  Whitney unlocked the door for me and there Mom stood, looking toward the door.

A huge smile washed over her face as I stepped into the room and her arms went out for a hug.  Greetings and hugs out of the way, we walked back down the hall to join the others for exercises.  Sitting in a chair, Mom moved her hands and raised her arms a few times and then stopped, pointing to her shoulder.  She, and the other residents, watched as Beth and I did the exercises.  Seems they weren’t of a mind to join in today.  J

The Daily Chronicle was next and one of the residents, a former school librarian, read the one page newsletter.  Her reading skills are still quite strong and she even adds a bit of wry commentary here and there.  The residents seldom catch her quips but there are times when Beth and I can’t help but laugh out loud.

As she read, I pointed to the date on the newsletter, March 7.  Mom looked but registered no recognition of the date.  Today would have been Daddy’s 96^th birthday if Alzheimer’s had not taken him so many years ago.  The date no longer holds meaning in Mom’s mind but she still recognizes his picture.  Most days she says he is her husband, here and there she says he’s my father, an indication that she recognizes our relationship at that moment, and sometimes she even comes up with his name.

Full moon is dancing around today though, tomorrow being the official full moon.  I watch as one resident is holding a few of today’s Daily Chronicle, showing the gentleman beside her something on the page but talking about a totally different topic.  Meanwhile the gentleman, seemingly participating in the conversation, is telling her, “I’m glad we got that settled.”  I wish I would have been able to record that conversation!

Mom didn't smile because she was trying to figure out what I was holding "that thing" up for.

The full moon effect shows up in Mom in a subtle way today.  She told me she needed to go “in there” – her signal that she needs to use the restroom.  When she walked into her private bathroom, she looked lost.  I gave her a gentle reminder of her purpose but she looked at the fixtures as if wondering what they were doing there.  She told me that things “were very different”.  I pointed out the toilet and the toilet paper – she was still confused.  Then she went to her dresser to get her “bits”.  She looked through her dresser, obviously looking for something to use in the bathroom.  I let her go through her motions because I have learned that stepping in to the midst of the task can cause more confusion and have surprising (and not hygienic) consequences.

She eventually made her way into the bathroom and used it successfully.  I gently reminded her to wash her hands and we walked to the dining room where I was able to get her settled for lunch.

For now, her love for Daddy is still there but I’m happy to take over the remembrance of his special day since she can’t.

Even those with dementia love kids but…

Oh, the look on the residents faces when I walk in with my 3 year old grandson!  They are all smiles and saying hello as we walk back to Mom’s area.  Even when we walk into Mom’s area, where those residents in the later stages of dementia live, faces light up.  Words aren’t always there for them but they convey their pleasure in their expressions.

Mom really lights up when she sees a child.  I’ve only seen her when one of her little ones (great grandchildren) walks in and she seems to know they belong to her but I have a feeling she would be delighted with any child that walked in.

Yesterday, however, was a good example of how happy things can turn volatile quickly when dealing with dementia.

We arrived during exercise time and sat down next to Mom.  My little guy, Anthony, was feeling shy so he sat on my lap through the exercises and the reading of the Daily Chronicle.  The residents watched him and smiled but went on with their routine.  Snack time came next and while I passed out glasses of water, Anthony finagled a couple peanut butter crackers from Beth without asking but did whisper, “Thank you”.  J

Next up was noodle ball!  Anthony was happy to play and the residents were happy to play and watch him.  He’s 3 so I did have to remind him to share and make sure he was careful not to hit anyone but all was going pretty well.

There is a relatively new gentleman in the group who reminds me of my daddy because he calls the women “Mom” and everyone else “George”.  He talks constantly and was talking all during noodle ball.  He seemed to enjoy playing with Anthony and kept commenting on “the boy”.  Suddenly, as we played, the gentleman became upset and stood up, waving the foam noodle in a menacing fashion, talking the whole while.  It appeared to me that he was imagining some slight to “the boy” by the other residents.

Tina, the wonderful aide who cares for Mom, stepped in front of the gentleman and tried to gain his attention.  He towered over her but she is intrepid!  She worked on calming him and while I felt no threat toward Anthony, the aides were concerned so I took Mom and Anthony away from the situation.  Tina quickly calmed the gentleman and soon had him sitting on the couch holding one of the baby dolls.  Volatile situation averted.

It was another reminder of my daddy.  Daddy was in the nursing home when my son and youngest daughter were around Anthony’s age.  We went outside with Daddy and he became very agitated when we let them run across the driveway unattended.  He didn’t understand that it wasn’t a road and that they were safe.

While their memories are fading, you can never tell when a situation will bring forward an old memory, good or bad.  I know in my heart that the gentleman was being protective of Anthony but given the ravages of dementia, he no longer has the social skills to deal with the situation.  To avoid a similar situation, I think I’ll work on a different way for Anthony to visit Mom.

All tuckered out after his visit with Great Grandma!

I must come from a long line of moving people…

The majority of my ancestors on my dad’s side have been in one area of Ohio for almost 200 years so I just have to think that the urge to move has to come from my mom’s side.  Given her story, it only makes sense.

Mom’s great great grandfather moved to Kentucky almost 200 years ago, much like Daddy’s moved to Ohio.  I can find a majority of my ancestors on my mom’s side in two cemeteries not to far from where I live now.  But that doesn’t tell the whole story.

Although my great grandpa spent his life in Kentucky, for some reason his children moved to Illinois.  My grandpa met and married my grandma there and they proceeded to have four children.  My mom, the baby of the family, was just two months old when my grandma died.  Left with an 8 year old girl, boys 7 and 5, and an infant, I’m sure Grandpa had his hands full and he had to make some tough decisions.

Within a year of Grandma’s death, Grandpa headed back to Kentucky.  On the way, he allowed my mom to be adopted by a wonderful childless couple in Indiana but kept in touch with them as Mom grew up so I was lucky enough to have two grandpas on my mom’s side.

The moving around continued through Mom’s childhood.  They moved from Indiana to Ohio to Florida and back to Ohio.  They finally settled down when Mom was in elementary school and stayed in that area until Mom was married with children of her own in a town close by.  At that point, they moved in with Mom.  From that point on, Mom spent a good, long time in one spot but her “moving” experiences translated to moving furniture.  She seems to have passed that habit down to a few of us.  J

You may wonder what this all has to do with anything today.  Well, every time I visit Mom she tells me that she has “everything ready to go”.  She tells me that “he” told her that she’ll be moving.  It has made for some interesting situations.

When we moved her into the home, we tried to set her room up with furniture and pictures that would be familiar to her.  We tried hanging pictures on the wall but she pulled them down, hangers and all.  Pictures or anything else that we put on her dresser were soon packed away in the dresser drawers.

Most recently she has begun stacking her furniture so that it is “ready to go”.  Tina, her aide, has been quite surprised at times to walk in and find pieces of furniture stacked three high.  The stacking is troublesome because of the possibility that might fall and hit Mom.  Hmmmm…

So today was a bit of a moving day although Mom was not aware.  Once I had her settled at the table for lunch, I went back to her room and gathered up the pieces most likely to cause a problem.  I took home a straight-backed chair and a storage footstool.  We’ll see if I have to take anything else home next time.  J