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!

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.

 

To cath or not to cath…

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

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

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

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

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

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

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

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

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

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

 

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

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

Their time and ours – or – “I have a meeting…”

It’s not easy making the decision to place a loved one but sometimes it is for the best.  In the case of taking care of a parent, I think we feel that they took care of us therefore we should take care of them.

To a certain point, I believe that to be true.  I also realize now that when Mom was raising me, however, she was able to continue her life and it was a busy one!  Sewing our clothes and quilts, knitting and crocheting our sweaters, hats and mittens, taking care of a vegetable garden that took up an acre of land and canning or freezing everything that came out of it took up her days.  In addition, of course, she was taking care of all of us, especially me, the baby of the family of five children.

One memory of my childhood comes back each time I kiss Mom goodbye now.  I most always visit in the morning and stay until she sits down to each lunch.  She always wants to know if I am staying and is obviously looking for a place for me to sit.  My response is always the same.  “I have a meeting”, I say, knowing that response will put her at ease.  I don’t have a meeting but it is something with which she can identify.

Mom begins her process of preparing her place setting for lunch.  For some reason, she uses her napkin as a placemat.

Daddy was a teacher and Mom was a homemaker all the while I was growing up.  I remember the school nights after dinner when we would all be in the library of our home, Daddy grading papers and my brothers and sisters doing homework.  Busy during the day, Mom used that time to read, something she loved to do and hence, the reason we had a “library” in our home.

Some nights, however, Mom and Daddy would leave after dinner to go to a meeting.  They were involved in church, Daddy’s school, and the local school my brothers and sister attended.  There were also 4-H meetings because they were both leaders, separately – Daddy of a livestock club and Mom of a sewing club – and Daddy was one of the founders of the local baseball league given that he had three sons to keep busy.

So, out they would go, telling me that they had a meeting to go to.  It was sometimes frustrating to me because in my mind, I was the center of their world.  Why would they leave me?  J  One particular night, they told me I could stay up until they came back home but they didn’t tell my brother whom they left in charge.  When I refused to go to bed, I very clearly remember him picking me up and carrying me upstairs to my bed.  He was gentle and kind about the entire thing and kept telling me that Mom and Daddy didn’t tell him that.  Needless to say, I was not happy with them when they arrived home!

Lucky for me, Mom is not a child.  She may need help at times like a child and she can’t find the words she wants but there are some things that still strike a chord in her mind.  Meetings is one of those things and if a little lie like telling her that I have a meeting will put her at ease, then I can do that!

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

You’re probably wondering why it’s been so quiet…

It’s quiet because all is well!  As expected, it took awhile to get Mom truly settled in to her new home but eventually she settled into a routine of some sort and the aide who cares for her most became used to her habits and idiosyncrasies.

That’s not to say that every day is peachy keen.  This last full moon was a doozy as far as the effect on all of the residents.  The confusion and behavior became quite comical at times – it’s best to laugh rather than dwell on the fact that their once wonderful minds are slowly leaving them.

The week leading up to the full moon found Mom alternating between grumpy and downright crabby.  Each time I walked in and asked how things were going I learned that Mom had been a handful.  Tina lays out Mom’s clothes each day but Mom is still able to dress herself – for the most part.  There was a day that Tina had to send her back in three times to get it right and Tina finally went in with her to help.  Ten minutes after getting the clothes on correctly, Mom went back in her room and changed the clothes all around again.  J

The day of the full moon was a treat too!  I didn’t visit that day but my sister and my niece did.  Mom refused to put her teeth in and kept insisting that they weren’t her teeth.  Tina was not working that day so I promised to take a look at it the next morning.  It was doubtful that they weren’t her teeth but given the full moon, you never know.  I’ve watched the aides pull all sorts of personal items out from under the couches and chairs and I’ve watched them searching all the rooms trying to find a resident’s glasses or some other item.  In fact, Mom’s is one of the rooms they always have to search!

I walked in the day after the full moon and Mom was practically wiggling from head to toe, she was so happy to see me.  It was easy to see that she had her teeth in and yes, they were hers.  So at that point I just chalked up the teeth issue to the full moon.

During my visit, I happened to get a side view of her face and noticed that all around her right eye was puffy and red. She wasn’t complaining or rubbing it and it wasn’t noticeable when you looked at her because of her glasses. I also noticed Mom was coughing a bit. I thought nothing of it at the time but later in the day it dawned on me. Mom had complained about her teeth because she was having a sinus problem with the weather change and it made the bones in her jaw hurt.

If you look real close you can see the redness around Mom's right eye.

I alerted the home to the possibility and the nurse checked Mom out.  It was just a little pink at that point so the nurse gave Mom some Claritin and said she would keep an eye on her.

So, yes, there are blips, but all in all, it’s all good.

It’s probably good she is farther away… AKA Stay away when you’re sick!

I’m missing Mom right now!  I haven’t seen her since last Tuesday – almost a week!  Usually I see her two times a week, sometimes three, and I visit for a couple hours.  I’ve stayed away since last Tuesday because I just didn’t want to take the chance of spreading an illness to her or any of the other residents.

Some things don’t stop me from visiting.  I hurt my back the Monday before Thanksgiving but I still visited.  When my husband came down with a cold or infection of some sort after Thanksgiving, I visited last Tuesday because I had no symptoms and we were being careful.

My next visit was to be last Friday but I received an early morning call that my littlest grandson was not feeling well.  God must have been watching out because I started having headaches that day – not caused by my little Hurricane J - and by Saturday was well on my way to the same thing my husband had.  Here I sit today, still not 100% but hoping that later this week I’ll be in good shape to go.

I’m especially sensitive to visiting if there is a possibility that I am ill because many years ago, I worked in a nursing home as a dietary aide.  I loved my work!  I helped the cooks prepare the meals and kept everything clean and neat for them.  My favorite part was serving the residents – knowing each one’s quirks and favorite foods and joking with them as I made sure they enjoyed their meal.  After the meal it was my job to wash the dishes and put them all away but industrial dishwashing equipment made that a fun and easy chore too.

So what does that have to do with spreading an illness?  There was a day during my time there when a cook came in with a stomach virus.  She should have stayed home and certainly should not have been handling food.  Within one week, three of the most vulnerable residents passed away after having symptoms of a stomach bug.  I can’t say it was the cook’s fault because the bug was going around and visitors were coming in and out all the time.  All these years later, however, I still remember that lesson.

So, in this case, I’m happy that Mom is farther away because if she was close, I would feel that I had to see her every day because no one else would be close.  And I’m happy to say that, while I have not been able to visit, our very large family has more than made up for it!  Mom has had MANY visitors this past week!

Two of my grandnieces take Mom and another resident for a walk.  It makes me SOOOO happy!