Please Take Time to Watch...

Dementia is one of the hardest things for caregivers of the elderly to understand.  "Why does Mom act this way?"  "What is wrong with Dad?"  How can they be so confused and lose focus so easily?  This video does an amazing job of examining these questions and more...and demonstrating what life may be like for a loved one with some form of dementia.  It is well worth the 8+ minutes it will take to view...8 minutes that could change your entire perspective.  I would not wish this on my worst enemy...but sadly, many people we love dearly are dealing with some level of this madness - either personally, or as a caregiver.  Please take time to watch and learn...it might make a huge difference in your life and that of someone you love.

Safety in Numbers... and Paying it Forward

Yesterday, I attended a quarterly Family Council meeting at the ALF.  Dr. Kimberly Curseen, Medical Director of the geriatric palliative care program at the UAMS Reynolds Institute on Aging was the speaker.  I'll be honest... I almost didn't go.  And as Dr. Curseen began to speak, I wondered why I was there.  It wasn't her fault.  But the discussion centered on Alzheimer's patients and their care... and dementia.   However, as Dr. Curseen began to explain the stages of Alzheimer's and dementia... and the various kinds of dementia... she hit on several things that resonated with me and my situation with Mam-ma Polly... and she gave me several insights.

The first thing that hit home with me was Dr. Curseen's comment that "one of the last things to go" in dementia patients is the "social graces"... the ability to smile, say "Hi!  How are you?"... or to shake a visitor's hand.  She said this is why patiens will light up when someone enters the room and speaks to them... and this is 100% Mam-ma Polly.  Later in the discussion, I said to the group, "If one more person tells me that Mam-ma 'still has that sweet smile,' I think I may scream."  Mam-ma will die with that sweet smile.  It's all she has left!  The administrator chimed in and agreed... "Even when Polly feels really bad... like today... she is still smiling."  Another family member attending the meeting asked, "Oh, is that the sweet little lady who is always peddling around in her wheelchair... the one with the white hair?"  That's my Mam-ma Polly!

Later, Dr. Curseen talked about how difficult it is to take Alzheimer's and dementia patients out of their routine.  She mentioned that once-frequented restaurants may now be too crowded, noisy and confusing for the patient.  She suggested that any visits to places outside of the facility be done at off times... with small groups... in quieter settings.  This really resonated, too.  Mam-ma did not do well at all the last few times we took her out to eat.  And the ALF administrator added that they always see a lot of behavioral problems with residents around the holidays... when families insist on taking them out of the facility and away from familiar surroundings.

This was another revelation for me... and I thanked the administrator for speaking out.  I told her that I truly grieved over the decision this Christmas NOT to take Mam-ma out and try to get her to our house on Christmas Eve.  While I knew in my head that we could not physically get her inside - she didn't even make it off the driveway last year! - I still felt guilty.  And then someone asked me, "How was it the last Christmas she was with you?"  "Terrible!" I replied.  "She slept most of the time or looked and acted miserable... and she was ready to go home before dark."  "So there's your answer," this person told me... and she was right.  And now I had reinforcement from the facility staff.  Mom and her husband ate lunch with Mam-ma on Christmas Day... I was there for the facility dinner earlier... and a day or so before Christmas.  And Mam-ma was fine... probably happier than the last Christmas she spent with us. 

When the doctor finished her discussion, the family members began to talk and share.  One lady, a retired nurse for the state hospital, told of her husband, who has Alzheimer's.  She said she should have seen the signs earlier, but she didn't... and maybe she didn't want to.  The doctor very lovingly reassured her that "We see the signs when we are ready.  You did nothing wrong.  When the time was right, you made the move."  This sweet lady spoke so lovingly of her husband and how she visits him each day... and how hard it has been.

Another lady spoke of her mother, who is apparently the QUEEN of guilt trips.  She told of visiting recently with her sister.  Her mother lay in bed repeating, "Oh, LORD, help me!  LORD, help me!"  Finally, the daughter said, "Mother, what do you need?  We're right here!  Why don't you let us help you?"  The mother replied, "Because I can trust HIM!"  We all had a laugh, but the woman tearfully said, "It's been four years now... when do I stop feeling guilty?  I can't even enjoy doing the things Mother used to do, because I feel so guilty that she can no longer do them."

I reminded this lady that we honor our loved ones when we do the things they can no longer do - or at least I believe we do.  I told her that I can make my grandmother's sugar cookies and homemade rolls, and in sharing them with others, I feel like I carry on her legacy.  Now, this woman's mother may not admit that to HER... but the administrators assured her that out of sight, this woman is adorable and pleasant - that she truly has mastered making her daughter feel guilty... and delights in doing so!  And this may never change.

What can change is this woman's attitude.  She can live in the world of her mother when she visits, and leave it at the door.  I know it is hard, but you can do it if you work at it.  We also all agreed that talking and sharing helps tremendously.  I pointed out that I believe if anything positive can come from our experiences, it is that we share them with others who are going through a similar situation, so that they know they are not alone.

In the end, the doctor told us that statistics show that the stress level of caregivers with a loved one still at home versus that of a caregiver who has admitted their loved one to a facility is markedly similar... no real difference.  I found that tremendously profound.  I don't think I am nearly as stressed now that Mam-ma is at the ALF... but if I add up all of the trips and meetings and phone calls and struggles over laundry and diapers and wipes and medications and falls... the wondering if/when the phone will ring... the not feeling comfortable to leave town because this might be "the day" that we are needed... I see that the stress is still here.  It's just packaged a little differently and distributed in spurts more than day-to-day (and sometimes hour-to-hour) like before.

So I came away from the meeting with a sense of community.  We are all in this boat together... and we have stories to tell... people to encourage... and at least one for each of us who desperately needs us to reassure him/her that they are still loved, valuable, and honored.  For the foreseeable future, this is my task.  I pray for the patience to see it through.

Meanwhile, I need to throw in a happy thought.  Timothy started HIPPY this week... the Home Instruction for Parents of Preschool Youngsters program.  He LOVES it already, and he made quite an impression on the instructors at the elementary school when he went for his evaluation.  All three of our little ones are growing like weeds (and keeping the other end of the spectrum in perspective!).  Oh, LORD... give me strength!

Our little Zola... almost 2.

Nathan Daniel (7 months) with his Uncle Greg

All She Needs is a Tin Cup!

I've done some serious "textile therapy" in the last week, so I have only visited my grandmother a couple of times.  My mom has visited a few times, too - and my sister still works 3 weekend nights - so it's not like Mam-ma has not had visits from her family.  When my mom visits, she often reports that Mam-ma "had trouble holding her eyes open," so Mom ends up pulling up a chair and just sitting at her bedside for a while.  I find it interesting that I can go the very next day - or even the same day - and Mam-ma has no trouble staying awake.  I'm wondering if this "pretending to nap or be sleepy" is for Mom's benefit.  Mom thought that Mam-ma was mad at the world the last time she visited, and this was why she closed her eyes and literally shut everyone out!  We'll probably never know for sure.

I found things pretty well on Sunday when I visited.  I took more sewing to show Mam-ma, though she never even raised up in bed.  She looked it all over - twice - and declared, in a rather long sentence for her... "I said to myself, 'She's a havin' the time of her life with this sewing.'"  I heard this several times over the course of ten or 15 minutes.  My husband and I were attending the funeral visitation for a dear friend that evening, so I didn't stay long.  But I thought all was well... until I talked with my sister on Tuesday.

It seems that Mam-ma continues to holler, though she has not done so while I am there in about two weeks.  But at night and much of the daytime, if she is in her bed or recliner, she is hollering for any and every aide who passes her door.  And my sister said when she is on duty, she will hear "Suzaaaaaaaaaaannnnne!"  Worse still, when the aides to not respond as quickly as Mam-ma thinks they should... she has begun to rattle her bed rails!  I told Suzanne that maybe we should get her a tin cup, like you see the prisoners scrape across the bars of a jail cell in the movies.  She replied, "Don't you dare!"  I would never do this, and it's not funny... but I can just see my grandmother.

So on one hand, we feel like maybe she cannot help the fact that she hollers.  But when you know enough to call the aides by name and rattle your bed rails... it's hard to believe you are clueless.

I am assured that there are others who do this sort of thing... and worse.  But they are not my grandmother.  And they don't have a loved one working there.  It's a dilemma... but my sister insists that she wants Mam-ma kept in this facility - that she is managing just fine.  So we remind Ma-mma often that she must not holler... that it doesn't make the aides come any faster or more frequently to check on her.  And I'm waiting for the day the administrator calls to tell me her bedrails have been removed.

My grandmother has come so far in the last two months... farther than I ever dreamed she would when we left the hospital in early May.  Still, she is declining, in many ways.  I am prepared for the possibility that she might continue to improve enough that she no longer qualifies for Hospice care at this time.  But I feel like the far more likely scenario will be that she falls...develops an infection of some sort... or overheats sitting outside on the porch.  Every day is different.  Meanwhile, we all agree that we should keep objects that can be clanged against the bedrails at a hefty distance.  If Mam-ma figures out how to make noise with one of those, we're sunk!

We're the Only "Normal" Ones Here...

Mam-ma Polly and my niece
Jasmine (Timothy's mom)
about 1992 - Mam-ma
would have been 80.

Last week, I went to visit Mam-ma Polly one evening just before 5:00 p.m. She was in the dining hall, dressed in a winter sweater - and pants.  In case the full impact of this statement has eluded you, let me remind you that I removed ALL of my grandmothers pants and pajama pants from her apartment (or so I thought) a few weeks ago.  I couldn't get the aides to stop putting pants on her (I felt dressingand undressing in pants would be cumbersome and painful) so I bought a half dozen house dresses for Mam-ma to wear and brought all the pants home with me.

Somehow, I guess I missed three pair of pants in the laundry.  An aide had reorganized the closet and matched these pants up with what blouses she could find (or in this case, a sweater) and dressed Mam-ma in an "outfit."  I explained that we are not wearing pants.  The aide apologized profusely.  The nurse rolled her eyes and said, "You have signs everywhere that say 'NO PANTS!'"  I assured them both that it was okay, and I gathered up the pants and all of Mam-ma's blouses and sweaters and brought them home.  I told my mom and the rest of the family, "Now all she has is her house dresses, some cardigan sweaters and jackets, and her winter coat.  If you go to visit and Mam-ma is dressed in her coat, you will know why!"  It shouldn't be this difficult!

Mam-ma with Timothy (Jasmine's baby)
Thanksgiving 2010

I did not go to the ALF on Tuesday or Wednesday - I was not feeling well.  However, my mom went on Wednesday, and she thought Mam-ma talked well and was doing okay.  On Thursday, I stopped in to see Mam-ma, and she was in bed. Some former neighbors from my childhood stopped by to say "Hello," and she seemed glad to see them.  That afternoon, my grandmother's three cousins in Oklahoma (who are more like nieces), called to say they wanted to drive over for a visit on Friday.  This is at least a four-hour drive for some of them - and one cousin and her husband were coming from Oklahoma City.  They promised to arrive after lunch and only stay about an hour.  They really wanted to do this, and I told them that I felt Mam-ma is as good as she is going to be - so come on over!

Friday, I went to the ALF about 1:30 p.m. to greet the cousins and make sure Mam-ma was doing okay.  They had just arrived.  I had some questions for the facility owner, so I left them visiting with Mam-ma in her apartment.  I ended up spending quite a while with the facility owner.  She was really pushing for Mam-ma to get physical therapy.  She explained to me how much she and the others love my grandmother - and how inspired and impressed they are by Mam-ma's "oomph" to get up and go.

I thanked the owner for being so caring toward Mam-ma... I truly do appreciate how they adore her and spoil her rotten.  But at the same time, I explained that Mam-ma's "oomph" is innate and belies her cognitive abilities.  She appears to be physically capable, to some degree... but mentally, she does not recognize her limitations.  I explained that rehab to get her walking again could possibly set her up for a bad event.  I believe she would not be able to comprehend her limitations... and she would try to do things she cannot and possibly fall and hurt herself badly.

Additionally, rehab would mean leaving Hospice.  This would be considered a "get-well" measure, and Medicare would not pay for rehab for someone on Hospice.  My grandmother is incontinent, she doesn't eat well, and most days, she is not mentally clear.  I feel she needs to remain under Hospice care.

Once we talked through all of this, the owner agreed that I was probably on the right track.  I agreed to keep an open mind.  Should my grandmother show improvement, I would have no problem removing her from Hospice in favor of rehab.  But we are a long way from this... and honestly, I don't think it will ever happen.

The cousins stayed about 2 hours.  I think they had trouble leaving and probably realized they might not get back to Arkansas to see Mam-ma again.  When I visited Mam-ma on Sunday, she did not even mention the cousins' visit.  She was in the dining hall, and I visited with her there while the aide fed her a roast beef lunch.  We returned to her room, and I showed Mam-ma some sewing projects I had brought.  She seemed to understand that I had made the pillows and dresses, and she fingered each one.

For several weeks, Mam-ma has mentioned one of these cousins named Patsy... to me, her aides, and one of the Hospice nurses. She has said more than once, "I want to call Patsy."  I assured her that I was keeping in touch with Patsy, and we all knew that Mam-ma could not talk on the phone well enough to have a conversation with Patsy... so I would do the communicating.  So when Patsy visited and Mam-ma did not even speak her name afterward, I was even more convinced that therapy is a bad idea.  My husband said, "Your grandmother has not said much in months.  Why would you think she would talk about the cousins coming?"  I agreed, but as I told him, I thought she would at least say, "Patsy," or "the girls came," or something about Oklahoma.  But it's like it never happened.  I do not think she remembers it at all... nor do I think she remembers her neighbors visiting on Thursday.

Yesterday, I visited late in the afternoon, and Mam-ma was asleep.  I rattled my car keys, and she roused.  Instantly, she reached for me and was visibly upset.  She said, "They've confined me to my bed, and I don't know why."  I asked if she had been up, and she said, "No!  They've confined me to this bed!"  The nurse overheard this and said, "She's been up a LOT today - she was up for breakfast and lunch, and they just put her back to bed after lunch."  I also knew that the Hospice aide had been there to bathe her during the morning hours - and the Hospice nurse had made a visit.  Mam-ma was mad.  She insisted "I'm confined to this bed, and they won't tell me why!"  "Confined" was the word she used over and again.

Finally, I rang for Mam-ma's aides and asked them to change her and get her up.  By this time, it was about 4:15 p.m.  I said, "We'll just let her sit in her wheelchair for a while and I will push her out to dinner."  I thought getting her up might prove to her she was not confined.  It didn't.  She sat in her wheelchair and said, "I don't understand why they have confined me to bed."  I told her... "Mam-ma!  You are sitting in your wheelchair.  You are NOT confined.  You can get up any time you want and sit in this chair or your recliner."  She looked at me like I was from Mars, and then she said, "Well, since I've been confined to my bed, I've not been able to get my kidneys to work."  She followed this with, "I've got to go to the bathroom!"

I realized Mam-ma was not mentally on the same planet with me, and I was wasting my breath.  After the aides came once again to change her, I wheeled her to the dining room.  We were very early - it was only about 4:30 p.m.  But drinks were already on the table, and I offered Mam-ma coffee, which she declined.  We sat in total silence.  Mam-ma stared blankly at the table.  A few more people entered the dining room.  In one corner sat a woman and her gentleman companion.  There were a few other ladies sitting at various tables throughout the dining room.

At the table nearest us, a lady sat sorting silverware.  She seemed to be in the throes of dementia as she unrolled the silverware at each place setting and combined them, then rolled them again in a napkin, saying, "It's just one thing after another."  At one point, she looked toward Mam-ma and me and said, "How can you kill someone if he's already dead?"  We did not respond, of course!

Then I heard the lady sitting with her gentleman friend say, "Look! These people are all crazy.  That one is rolling silverware.  That one is doing what she should... so is that one... and that one (gesturing toward me) is just sitting there staring at her mother!  We're the only normal ones here!  I think we should leave!"  It was all I could do to keep a straight face.  My worst "fears" have been confirmed... I am no longer "normal!"  At least it added a little levity to an otherwise depressing visit!

I found out later that when the Hospice nurse had visited yesterday morning, she found Mam-ma curled in a fetal position in her bed, very blank and sad.  Mam-ma cried, and the nurse asked her, "Are you hurting?"  Mam-ma said no, she wasn't hurting.  The nurse asked, "Then what's wrong, Polly?"  Mam-ma replied, "I'm tired."  The nurse was very upset... she loves my grandmother dearly, and as she told me today, "I think she is so tired of this life."  I agree... but we all know we cannot change this.  I'm touched that the nurses care so much.

Today, my mom visited and found Mam-ma a little better.  She was able to visit some - even asked a few questions, like when my niece's next baby is due.  But Mom didn't think she was "great" by any stretch.  And...at one point, she said Mam-ma told her, "I prayed and prayed and prayed that I would never be this way."  We think she meant being incontinent and dependent on others to change her and keep her clean and dry.

On a happier note, we talked to Timothy this week, and he sounded great.  He told us all about swimming and Toy Story 3, and his birthday cake.  He also told each of us that "I love you," and that made our day!  And... I was told by my cousin Natalie that her three-year-old, Owen, wants to wear the "Toy Story" shorts I made him every day - she can't keep them laundered enough for him!  Owen and his 8-year-old sister, Olivia, visited us last Tuesday, and I gave him the shorts.  I also gave Olivia a denim skirt I had made for her.  Sewing for them is great therapy and gives me a reason to smile.

So every day is still different... and Mam-ma's decline continues. I have asked my family and friends to pray for peace for my grandmother. I am trusting God's will and His timing... and I know if Mam-ma is still here, there is a reason. But she is truly miserable... I am convinced of this... and it's heartbreaking. I try to do what I can for her when I visit... and not to think about it too much when I leave. I feel like the best thing I can do for her and everyone else at this point is to try to preserve my own sanity, and - despite the assessment of the other ALF resident - maintain as much "normalcy" as possible!  Wish me luck!

We're All In This Boat Together

Several times lately (twice in one recent trip to Wal-Mart), I have commiserated with others who are balancing the care of an elderly loved one with their own lives and responsibilities... and to some extent, the care of grandchildren or other little ones.  Some are dealing with similar issues to mine with my own grandmother - the challenges of aging, dementia, depression, and grief over the loss of peers. Just since the first of this year, five residents of my grandmother's ALF have passed away... and four of those were her close friends.  Another dear friend who lived across the street at the skilled care nursing facility died last week.

Losing five friends in less than five weeks is enough to drag anyone into a deep depression.  So it comes as no surprise that my grandmother has not thought clearly in recent weeks.  One of her table mates sunk into a deep depression over the loss of their dear friend, Ruth, who had been a next-door neighbor to this lady when they were still living at home.  I visited with the grand-daughter of this sweet lady one afternoon at Wal-Mart.  She said, "We could write a book!"  I told her... "My mom already has!"  I also shared a link to this blog, and she has e-mailed me to say she read several posts, and she felt better knowing that others were having similar experiences to hers with her own grandmother.

So I thought this would be a good time to mention my mom's book again.  It's called When Heads and Hearts Collide, and it chronicles much of the journey with my maternal grandparents, both of whom lived out their days in a skilled care nursing facility.  I have shared this book with several friends, and to a person, they have all said, "This could be me!"  So many of the themes of the book are universal among those caring for elderly loved ones.

I would also like to mention a phenomenon that is quite common among the elderly, and that is something called "Sundowning."  Information found at www.mayoclinic.com says that... "the term "sundowning"  refers to a state of confusion at the end of the day and into the night. Sundowning isn't a disease, but a symptom that often occurs in people with dementia, such as Alzheimer's disease. The cause isn't known."  The website lists several contributing factors:  fatigue, low lighting, increased shadows, and disruption of the body's "internal clock".

An article at AARP.org defines "Sundowners Syndrome" as "a cluster of signs and symptoms that occur as darkness falls. The onset can be abrupt and the behavior can have a paranoid quality to it. The person may have delusions they are being watched. Very often they become severely agitated and argumentative. It is common for them to lash out at their caregiver as well. There also may be pacing, wandering, cursing, yelling and hallucinations."

Not all people who "sundown" are what I would consider "elderly."  The husband of my mother's cousin is experiencing this condition in his early 70s, following chemotherapy for lung cancer and other medical procedures.  But the symptoms are very similar...and one of the worst for caregivers is agitation - often to the point of beligerence.  My mom's cousin said that during a recent episode, her husband required medication to calm him... and it took more than one person just to administer the medication.  This can be extremely trying for the caregivers and other loved ones who are standing helplessly nearby.

There are a couple of things that we should remember...

1. Fatigue may play a big role in "Sundowners Syndrome."  Ask yourself whether your loved one has been unusually stressed... perhaps hospitalized and out of the normal routine... or overly tired or run down from an illness or injury.
2. Don't take it personally... even if your loved one lashes out and says it's your fault.  Remember, your loved one is not himself/herself for whatever reason.  This behavior is not deliberate... nor something either one of you can necessarily fix.

I am continually surprised when I talk with others and discover how amazed they are to learn that others experience much the same thing.  There are a lot of you out there who are lonely and isolated... and this is really sad.  Look around when you visit your loved one.  Find someone who is visiting another resident and strike up a conversation.  See if maybe you can befriend each other.  If you know of someone who is dealing with much the same situation as yours, reach out to them.  We really are all in the same boat... and somehow, knowing that we aren't alone is of critical importance.

My  mom's book can help, too.  You can order it from her blog by clicking here.  Look on the left-hand sidebar for the order button.  And sometimes it helps to share your own story.  Please feel free to contact me and tell me about your experiences.  If you permit, I will publish some of them here.  Sharing your own frustrations and loneliness might be the turning point for someone else who is walking this journey... and maybe keep a few of us from jumping overboard!

Saying "Good-Bye" Was Harder Than I Expected...

This past week brought some of the most difficult experiences I've had in a long time.  Our little Timothy has been spending time with us and his grandparents for the last 3½ months.  I would say he has probably spent at least 1/3 of those days and nights with us... maybe closer to half.  We have grown very attached, and Timmy truly bonded with us.  My sister said he got up every morning he was at her house asking to come to ours... and every evening when she picked him up at daycare, he asked, "Go to Aunt Debbie's?"  So I knew it would be hard to say "Good-bye" to him when he returned to Texas to live with his mother and baby sister... I just didn't know how hard.

The plan was for my sister and her husband to leave on Sunday, December 4, and drive Timothy to Texas.  However, a scheduling conflict at work caused my sister's days off to be changed.  My brother-in-law called me in a panic around noon on Thursday and said, "We have to leave tomorrow... do you want to go get Timmy and keep him tonight so you and Greg can have some time with him?"  I told him that we did, and I stopped in the middle of decorating for Christmas, grabbed a quick shower, and headed to the daycare to pick up Timothy.  Both the daycare owner and her aide cried when we left.  They walked away so Timmy would not see them.  He happily told them "Bye!" and "See you later!"

We thoroughly enjoyed every minute of the afternoon and evening with Timothy.  We took a walk down the nature trail - taking turns pushing his stroller, and calling it a "big adventure."  We played with toys and rode the tricycle.  We read books, colored, and watched Timmy's favorite TV shows and videos on YouTube.  And we tried not to count the minutes.  My mother came for a visit, and she had a hard time saying "Good-bye."  She had visited Mam-ma before coming over, and she told me that Mam-ma was not doing well... could not put sentences together... and that she had asked about Timmy and cried when Mom told her that he really was leaving.

Friday, we continued spending time with Timmy - doing everything he wanted to do and making the most of each hour.  I knew my sister was planning to pick him up in the afternoon... we had made plans to attend a Christmas dinner with friends that evening. My sister phoned around 3:00 to see if Timmy was awake, but he was about halfway through what I thought would be a two-hour nap.  I assured her I would call her when he awoke.  Greg sat nearby and "listened" for him while I took a shower.  I had just turned off my hair dryer when I heard him whimper.

Greg went to Timmy's crib and tried to console him.  He was crying for his Aunt Debbie.  Before I could soothe him, the phone rang... it was Mam-ma.  I don't know how on earth she does it, but she always seems to sense when I am really busy with Timothy - or even when he is here.  At any rate, she was upset... her glass bluebirds were "missing," and she just knew someone had stolen them.  I assured her they would show up, and I tried to be patient as she complained and disagreed with me. She said, "I've cried more over them than anything... Timmy loved playing with them so."  I told her Timmy was two - tomorrow he would love something else!  Finally, I told Mam-ma that I would come on Saturday and look for the bluebirds, and we hung up.

I returned to Greg and Timmy, and we sat and held him together for several minutes.  He was not good and awake, and he whimpered and sat snuggled against us.  Greg decided to grab a quick shower, and I called my sister to let her know Timmy was awake.  She said they were packing the car, but they would come soon and get him.  By the time Greg finished with his shower and dressed, my sister and brother-in-law were here. 

While Greg showered, I sat with Timmy and talked softly to him.  I told him how much we loved him... that he was going to have a good time in Texas... and that he had to go home with his GaGa and get a good night's sleep so they could leave early the next morning to go and see his mommy and his sister Zola.  I also reminded him that he could call me... every day... more than once.  I reminded him that every time he saw the moon, he would know that Uncle Greg and I love him... and I told him, "Make your mommy read your 'God books' to you and Zola every night!"  He would nod his head in agreement each time.

Timmy was still grumpy, and when he saw his grandparents, he started to cry again. He did not want to go.  Greg and I sat with him and tried to assure him it would be a good thing.  We all just sat for a while... until there was really nothing left to do but gather his belongings and say "Good-bye."  My sister and I were already in tears, and Timmy began to cry loudly.  He clung to me and didn't want to go.  I carried him to the car, screaming and clinging to me.  I put him in and strapped him into his car seat.  Then Greg and I both kissed him one last time, and I shut the door.  My sister said, "You know he will stop crying in a little bit."  I did know that, but it still broke our hearts to stand on our driveway and wave good-bye and blow kisses, knowing it will be months or more before we see our little guy again.  A part of me also cried because I knew he had missed his family... and he would be so thrilled to see them again.

I think God knew we needed a diversion, so he scheduled things in such a manner that we had this dinner party to attend.  He definitely shielded me from the prolonged agony of Timmy's departure.  I didn't have time to burst into tears and wail for hours, like I would have liked.  I had to finish dressing and get my food together for the potluck dinner, then get in the car and drive to our friends' house.  Greg and I both went into the "get-ready" mode and didn't say much to each other.  I told my mother today that I know God shielded me all night, because I slept fairly well, and it wasn't until the next day when reality truly began to sink in and I had time to be sad and grieve a bit.

Even then, I didn't have much time for sadness, because I had promised to go to Mam-ma's and look for the bluebirds.  I entered her room, and she was in a tizzy... they were still missing.  I started looking... under the bed, I found one.  She always keeps the birds atop the heat and air unit underneath her window, so I started systematically looking in that area.  The first object I came to was a decorative hat box on the floor.  I removed the lid... there were the other 3 bluebirds.  Mam-ma became irate... "Now those were not there 30 minutes ago!" she exclaimed.  She said that the maintenance man, James, had come into her room and assured her that he would find them.  I told her, "Maybe he put them in here for safe keeping."  She didn't believe me... but she insisted I bring the bluebirds home with me for safekeeping. 

It was almost time for lunch, so I put the birds in my car and went back inside to walk Mam-ma to lunch.  We sat for a while and visited with the other ladies at her table.  I noticed a tall young man walk through the dining area with bags of lab equipment slung over his shoulders.  I thought, "He's here to draw blood from someone."  In the next minute, a nurse was coming toward us, "Ms. Polly... the man is here to draw your blood."  She explained to me that the doctor had made monthly rounds on Friday, and he had ordered a Urinary Analysis and blood work... "because Ms. Polly is so confused.  She is accusing people of stealing from her, and she can't put sentences together coherently." 

I explained to the nurse that Mam-ma was upset because Timothy was leaving.  The nurse did not realize that this was happening, and she understood and agreed that this probably was contributing to the confusion.  She had seen Timmy and me there visiting Mam-ma the previous Sunday.  I told her that I knew all about the bluebirds, and she said, "James went into Ms. Polly's room and found them this morning."  I told her that I now have the bluebirds.  I asked if she would notify me before the doctor changed any medications or did anything differently, and she said, "Oh, absolutely!" 

I explained that we have seen a rapid decline in Mam-ma in recent weeks, and that she is praying to die.  I told her, "We really don't expect to have her much longer."  She seemed surprised, but she agreed that Mam-ma is definitely declining rapidly.

I added that Mam-ma could live another ten years, but I feel like she is beginning to lose her ability to function mentally, and the nurse agreed, adding that Mam-ma comes to the nurses' station several times a day and cannot remember why she is there.  I stayed a little longer with Mam-ma and left her in the dining room eating her lunch.

When I got home, my sister called to say that they had made it to Texas, and I could hear Timmy squealing and laughing in the background.  She said his reunion with my niece was amazing... that when he saw her, he began squealing "Mommy!  Mommy!"  Then my niece sent me pictures of our happy little boy, and I knew we would all be just fine.

I called my Grandmother on Sunday to assure her that Timmy is safe and well... and to remind her that I have the bluebirds.  She said, "Well, we'll see... there are still about three birds missing."  I told her that we only moved into Southridge with five birds, and I think one got broken several months ago.  Last Sunday, there were four birds for Timmy to play with... and I brought home four birds.  I told her, "Nobody is stealing from you... I have all of your bluebirds, and no one is taking anything else."  She said, "Well, I'm not so sure."

So the changes have begun. It's been so quiet around our house, and it seemed strange to finish the Christmas decorating this weekend, knowing Timmy and Zola will not see it.  But it gave me something to do to keep busy... and I was already more than 2/3 decorated, so it seemed silly not to finish.  Mam-ma has not called again... and I did not call her today. 

Mam-ma did call early last week to ask Greg why we didn't come to her birthday party.  It took her forever to get out her questions... and Greg wasn't even sure she knew who she had called.  We finally determined that Southridge had a collective party for all who celebrate birthdays in November.  Greg assured her that we were not invited... that the party was for her and her friends there at Southridge.  He reminded her that we did have a party for her... we took her to lunch at a local restaurant.  But he was really bothered by how confused she was... and how difficult it was for her to speak on the phone.

Today, Mam-ma's long-time housekeeper, Mary, phoned me and asked if Mam-ma is sick.  I told her no, and she said, "Well, I just talked to her, and she didn't sound well."  So I explained what has happened and Mary said, "I've made sugar cookies using Ms. Polly's recipe, and I wanted to take her some tomorrow if you think it's okay.  She is like family to me."  I assured her it was fine... that I can't promise Mam-ma will eat them, but please go and take them.  Mary said she would not stay long, but she would take cookies and some chocolate drop candy that Mam-ma enjoys.

People are so kind and loving to Mam-ma... including the staff at Southridge.  I told Mary today that I think Mam-ma is losing her mind... and if that is the case, I hope she doesn't linger.  It's not my call, and I know that... but I remember how hard it was to talk to my maternal grandmother and visit her after dementia set in.  She always seemed to recognize me and my mother... but she had a baby doll she thought was a real baby, phantom "thieves" and ne'er-do-wells who visited her room, and she insisted my grandfather (who had been dead for several years) was living in the nursing home with another woman - she saw them dining together in the dining hall.  I do not want my Mam-ma to suffer those indignities.

My husband asked me tonight what I plan to do with my spare time, now that we are not keeping Timmy several days/nights each week.  I told him I have a stack of projects I've set aside.  I am sure I will have no trouble finding something to do.  I am also sure that there will be more to attend to for Mam-ma in the coming days/weeks, as well... and this time I will not have to juggle the care of a little one in order to get it all done. 

The changes continue...and there will be more hard "good-byes" to come.  But for now, I am resting... in more ways than one... and resting in God's promises that He will never give me more than I can handle - and that He will truly supply every need of mine and my family.

Creating Balance in Your Sandwich... How to Avoid Doing the Wrong Things

The sale is over... and the final clean-up has begun.  I have to box up what did not sell and get it ready for the local thrift store... and then meet a driver who will come to collect the items.  That should finish my portion of the business with regard to Mam-ma's house and belongings.  Lest anyone think that this frees me of any responsibilities, there are still monthly bills to be paid... so that involves a checking account... and almost daily phone calls from my grandmother with something she needs... forgot... doesn't like... or has just remembered.

There are still "wrinkles" to smooth - like a mix-up with the pharmacy used by the ALF and over billing... and a few other little things... but nothing major.  This morning our power went out during a thunderstorm and was off for two hours.  I was so thankful that my grandmother was in a place where someone could attend to her and handle such matters... and I wasn't worried about her... or the contents of her freezer melting, and other problems.

Last week, I attended my first "Family Council" meeting at the ALF one afternoon.  The meeting ended up lasting two hours... but it was time well spent.  The speaker was an R.N. who is affiliated with Hospice, and the focus of her presentation was on Hospice care for Alzheimer's patients.  However, the information was appropriate for anyone caring for an elderly person... particularly those with dementia or the onset of dementia.

I learned several things about Alzheimer's patients that I did not know... how they often become obsessed with sorting, and many of them spend hours every day sorting their clothing, packing, and making little piles of their belongings.  The nurse and the ALF administrator said the biggest hurdle with some of these obsessive behaviors is getting the caregivers and family members of these residents to "let it go" and be okay with the disarray in the room and the annoying behaviors.  Another common thing is dressing in multiples... wearing more than one shirt and/or pair of pants.  It doesn't hurt the patients, but it makes some caregivers and family members nuts!  And learning to let this be okay is vital to the mental health of all parties!

I also learned that, even with my grandmother, when we are at the ALF, we must operate in their world.  If my grandmother is focused on something she views as a problem... like what happened to all of her stuff... it's my job to gently change the subject and redirect the focus.  The administrator said that one day she entered the room of an Alzheimer's patient who was packing, and the patient said, "I'm going home today."  She replied, "Great!  Come have dinner with us first - before you leave."  By the time the resident ate, he/she had forgotten about the move.  If I can learn to avoid conflict and argument with my grandmother and gently redirect the conversations when they become argumentative or controversial... then leave it at the door... we will both be happier!

I relayed some of what I learned to my mother, and she said, "Yes, I did it all wrong with my mother."  And while I'm not sure that is totally true, she did argue with my grandmother a lot.  When Grandmother saw my grandfather (who had been dead for years) in the dining hall "with another woman," and Grandmother insisted she had read about their liaisons in the local newspaper, she shouted, "I will not have this!"  And my mother insisted that she was NOT seeing Grand-dad... and that this was totally ridiculous. They argued about this for months. My grandmother had Parkinson's disease... which produces a dementia similar to Alzheimer's.  She thought her baby doll was real... and she called my niece Samantha to almost her dying day.  My niece's name is Jasmine.  There were dozens of these little quirks... and admittedly my grandmother was always quirky... but they escalated as she declined... and we did not handle them well much of the time.

Had we learned to redirect the conversations more and steer Grandmother to more pleasant and less confrontational topics, we might have had happier visits quite often.  There's more to this story, but every little "tool" helps to create a happier environment, so I was glad to gain a few strategies from my meeting... and I hope they will help others. 

Toward this end, here are a few other suggestions that were presented in a hand-out we were given from the National Caregiving Foundation.  I have selected a few that I feel apply to any elderly person - not just those with Alzheimer's.

• Your care-recipient will be upset about what the future holds. He needs to be reassured that the family will see that he is cared for. He needs to continue to feel that he is a valued family member.
   
• Be very vigilant about keeping him as involved as possible in the family's activities and decision-making; this will help him to cope with his own anxiety. 
• Don't talk about his memory loss in front of him and certainly not as though he is not there; such behavior on your part, can be very upsetting and demeaning for him. 
• Don't allow him to become withdrawn because he can't remember short term events and conversation very well.
• Don't be demanding about normal daily activities. An example is letting him dress himself even though it takes time. Be patient; not critical. You can assist him by setting his clothes out in the order of putting on.
• He will almost certainly still be able to manage simple chores which do not tax his memory, so involve him; it will help him to maintain his dignity.
• If he tends to get lost when he goes on errands put his name and address in his wallet to make him feel more secure.
• In the event that he forgets the names of people he knows well, prompt him discreetly, to help him save face.
• Don't confront him with complex, challenging decisions or questions; if you do, you will almost certainly add to his confusion.

The website for the National Caregiving Foundation offers lots of good information and support.  I encourage you to check them out for yourself by visiting the website.  And remember... it's all about balance.  Last week, in the middle of all of the chaos of the sale and getting things in order, I took an afternoon off to hike six miles with my husband and share a picnic lunch on a sunny spring day.  A few days later, I set aside everything to spend the entire day playing with our little Timothy... hiding Easter eggs, reading books, working puzzles, singing and dancing, and appreciating the wonders and excitement of a 2-year-old's world.  

Thinking about that time made the hectic days that followed so much more manageable.  I hope you are finding ways to create balance in your "sandwich!"