I was blessed today

When I arrived and Mom saw me she threw her arms around me and had a very joyous attitude!  It was so great to see.  No tears, in fact there were no tears my entire visit!  She was upbeat and talkative.  Nothing that I understood, but she was talking about it nonetheless!  We sat on the couch and she continued to talk about whatever it was she was thinking about and I’m sure it would have made sense had I been inside her mind.  I just nodded and said yes a few times, but she was, dare I say it, happy.  Or at least not unhappy in her demeanor.

Now, for the grogginess.  Suzy spoke to Mom on Wednesday and Mom was barely able to speak, she seemed so drugged.  I was aware that the psychiatrist had increased her depakote and Suzy said the therapist said he had also increased her Aricept which is the Alzheimer’s medicine.  When I called Mom, she went on and on about everything and nothing, really, until I had to end the call because she had the phone on the wrong ear and didn’t hear anything I was saying.

Today while visiting, I spoke to the nurse and the therapist about this grogginess.  They both agreed that they don’t want her groggy but need to watch for a few days after beginning a new med to see what tweaking is needed.  The nurse said her depakote dosage of 250mg 2x/day is a very low dose.  And it may be that they need to back it off a bit if the ‘drunkenness’ continues.  I do have to say, though, that her spirits were better and if we can continue along this path without her sleepy/groggy state it could be the cocktail we’ve been searching for.

Having researched the drug depakote when I found out they had given it to her I found that it can have some severe liver complications associated with its use.  It is not a probable thing but a possibility that we need to watch for.  I asked them if they have been doing blood work to watch for this and they both said yes, the she is being tested and when they looked in her file found that her liver labs have all been good.

I also asked them why the doctor hadn’t contacted any of the family members and was told that he usually leaves the updating to the nurses and therapists.  I asked that a note be sent to him to please call me and she said she would leave him one.

I almost had a commanded audience as at one point I had the nurse, the med nurse and her therapist all at the window discussing Mom’s care, with Mom standing with me smiling and telling all of them they would go to heaven.  The meds nurse has taken a special interest in Mom, maybe because she’s so young compared to others.  Maybe because she’s seen a fun side of Mom and has commented on that or maybe because she’d love to find the right cocktail that brings Mom into a peaceful place.  I don’t know but think the care she is receiving is good.

I am happy enough with her med changes.  I am very glad they saw fit to put her back on her Alzheimer’s medicine.  Her maintenance doctor at her assisted living community had removed her from it saying it was causing her to become agitated.  I disagreed with it the 2 times they removed it.  So I am happy about the addition back to it.  They took her off the Seraquel and put her on Zoloft.  I have heard good things about this drug for mood elevation and both the nurse and I have seen improvement in her mood.  Especially today.  They added Abilify which she has previously been on before coming to her new living arrangement.  And the depakote which seems to be the source of the grogginess.  So I’ll watch this and if all these meds continue to make improvements to Mom’s psyche, then I am all for them keeping her a bit longer for her overall mental status.

The meds nurse did say that Mom has been a bit aggressive the last 2-3 days.  Interestingly the same timeframe that her Aricept was increased to the highest 23mg level and then the depakote.  I asked them to mention to the doctor that this coincided with her aggressiveness to see if there is a correlation.  Her aggressiveness consists of pushing patients’ wheelchairs when they don’t want her to, entering other’s rooms and removing items, kicking at the staff and trying to pick up a chair to throw it.  She said that while it’s okay for her to do that there, it is not okay for her to do that back at her home so they want to address those issues as well and work that into the meds merry-go-round.  I asked about schizophrenic meds that control aggression and was told that’s what the depakote and another pill was supposed to work for that, so again, we’re in a waiting period for the meds to work or not.  So more tweaking.

Her glasses are still missing.  I asked about them again today.  I am loathe to take the new glasses we just bought from her eye exam for fear they’ll be lost too, so for right now, it is what it is with her glasses.  I WILL asked about our recourse if they are not located.  But later.  Suzy called her ear doctor to ask about replacing her missing hearing aid that is somewhere at her home-we hope-and I have not heard back from her as to whether or not he’s called her back.  Our hope is that we can replace just one since they are so expensive.  We have looked several times and alerted the staff at her home that it is missing.

As far as my visit.  Mom was relaxed and talkative.  About what I can’t know.  But she was full of information and talked for a long while.  Several times I would stroke her hair or move her bangs from her eyes and she would ask me if her hair looked awful.  I told her it looked great!  It was clean and soft.  We spoke about her old hair color and she said “it was never red, red really.”  And I said “no, more like a strawberry” and she agreed.  Her clothes were clean and she looked good.

I found myself just looking at her.  And a few times I pulled her close just to hug her.  I made sure my  head was to the side of her good ear and whispered several times how much I love her.  It was so good to just hug her.  Probably because she wasn’t crying.  It was like a real hug.  From long ago. 

I’ve heard this story about an elderly man who was on his way to see his wife, who was suffering from Alzheimer’s, for lunch as he did every day even though she no longer remembered who he was.  When asked why he went every day when she didn’t remember him, he replied “she may not know who I am, but I know who she is.”  Mom may not know who I am all of the time.  Or get my name right.  But she knows me.  My face.  The fact that she belongs to me and I belong to her.  Nothing else matters except that we are connected.  Her reality is not our reality anymore.  But it is real when we are together.  Today’s visit ended up being a gift for me rather than a gift for Mom.  She won’t remember I was there, but I remember that today she didn’t cry.  Today I saw joy on her face.  And she was proud to tell the nurses that I was hers.  I was blessed today.

I don’t know how long she will be there, but I think we’re on a better course than we have been the last couple of months.  We will all do all that we can each do.

I feel uplifted by my visit today.  I hope our prayers are being answered.

Love to all,

Lo

I'm learning....

We moved Mom back to Texas from the Independent Living community we had moved her to in Tulsa after about 6 months there.  It became clear that just the effort expended to live amongst those with their minds intact was such a huge burden for her that she was unable to acclimate.  So, on the 4th of July this year my sister and her family drove to Tulsa, packed up Mom's large 'apartment' room and drove her to Garland, Texas.  We began her on the assisted living side of this community but we soon realized "Assisted Living" was not what we thought it was, imagined it was or were told it was.  Assisted living is not unlike independent living.  The only difference is that they handle meds, clean the rooms and do the laundry.  With the occasional redirect.  But mostly, the residents are left to their own accord.

Mom needed more.  She needed activity.  Her mind was still so sharp that the empty halls and the one game of cards a day wasn't doing it for her.  She became quite agitated.  Partly because she had a UTI, which we have come to know, causes great disorientation and acting out in the elderly with dementia. 

Note to self: next time Mom has one of these meltdowns, call the doc for UTI meds.  Okay.  Got it!

Mom is now on the Memory Care side of the assisted living community.  And despite my misgivings, mostly because I didn't want to admit she needed it yet, she has done quite well.  The staff love her, her conversations and the off-hand jokes, as I have said before, because she functions at an almost normal level compared to most of the residents there and is easy to care for.  Whereas she was at the bottom of the clarity level the last 2 places she has lived, here she is top dog in that arena!  They tell me she is very helpful with the other residents when they need assistance.

I picked up Mom today to take her to church with us and then back to our house for pizza and the LSU/Oregon football game.   She did well in church since Catholics are so rote and because all of its traditions are long term memories.  When we got back to my house, however, she became more disoriented as the evening progressed.

Sometimes her conversations are so clear.  Othertimes she makes no sense at all.  It's a conversation that begins on another dimension.  Over the past 2 months I have learned to slide into her reality a bit easier.  It has taken some time to learn how, but it always ends up easier on the both of us when I am able to do that.

Mom: "well the man said he'd get all the paperwork done and turned in.  But you know, when you rely on someone else to do something for you, you need to follow up to make sure it got done."

Me: "well, lets check on that when I bring you back tonight." 

Mom: "okay." 

And then its done.  She's good and I'm sort of good.  "where's my purse?" "you didn't bring your purse, Mom."

Mom: "I don't even know where my purse is!"

Me: "It's in your nightstand."  Mom: "You know that for a fact?"  Me: "Yes, we decided to put it back before we left."  Mom: "Oh okay.  There's nothing in it anyway."

We had the purse conversation no fewer than 10 times.

New note to self: always bring Mom's purse wherever we go, even though there's nothing in it.  She just wants to see it.  She's carried one for 50 years.  Okay.  Got it!

After about 5 hours together it was apparent that she was getting more unsure about things.  I decided to take her back to her "apartment room".  She didn't recognize the place when we walked in the front door.  She's aware enough to remember that we would need a key to get in the door this time of night.  I assured her I knew the code to the alarm box. 

When we arrived at her room, she immediately recognized her roommate and I could almost see her shoulders drop and her anxiety lessen when she was with her things.  Her pictures, her bed, her chair.  Her home.

I told her to brush her teeth, get into her jammies and get some rest.  She told me I didn't need to stay and she walked me to her door.  We kissed and she said "drive safely."  And I left.

I found a card at the nurse's station addressed to my mom so I walked it back to her room.  I tiptoed in so as to not awaken them if they had fallen asleep but mom was in the bathroom brushing her teeth in her cute nightie.  I showed the envelope to her and said I had found it at the front and wanted her to have it.  With toothbrush and paste in her mouth she said "Oh, thank you!  Be safe driving home!"  We kissed again and I left.  It was an easy parting.  And she was so sweet brushing her teeth.  I've seen her do it a thousand times. It was as if everything was normal.

I love you so much, Mom!

Today is a new day....

I had my youngest nephew with me all this week and yesterday I took him to see Mom, his Nana.  She was sleeping when we arrived so I gently woke her.  She looked up at me, blinked a few times, and said "You're here!"

She did not remember I had spoken to her only an hour before and mentioned I might come later in the day.  She woke quickly, and looked down to see her smallest grandchild who, as is usual for him, had a wide, toothy grin for her.

She said "Hi sweetie, come give Nana a big hug!"  And she said hesitantly, "this is....Ayden?" I said "Yes!" I was thrilled and surprised she was able to pull his name out having not been around him as much as she had been around the other grandkids when they were small and after having only seen him 3x in the last year.  We then proceeded to look at her room with all of its pictures, stopping when Ayden saw several of himself and pointed them out to her with great pride that he was displayed in her room!

I said we should go for a walk and sit down the hall by the fish tank and visit.  Its always more fun as the staff has really taken to my mom and loves to chat with us.  Mom is a higher functioning resident and requires less 'hands-on' care than most of the others and can still carry on conversations with the staff and crack the occasional joke.  She is always so surprised that I know the medical aides so well and by name.  There's always the "how do YOU know all of these people?"  And then I gently remind her that I come often to visit.

We had a good visit.  Although by the time we were seated she had forgotten who Ayden belonged to.  It was a difficult description as I explained the family tree watching her mind search for images of the people I was describing.  Its so hard to watch her face as she works to remember.

And then, the Bird-Lady came!  She arrived with the most lovely Parrot named Zuzu.  She comes every Thursday for animal therapy.  Ayden and I immediately took to Zuzu!  She was beautiful and apparently took to me as well as she climbed my arm and perched on my shoulder for almost 30 minutes!  She cooed at me when I stroked her and nibbled my nose which I later learned were kisses.  Mom watched but soon became disinterested.  I didn't notice that she had walked away to the medical staff's counter until she came back.  When she stopped at the couch she looked at me and said "You came to see me!"  She didn't remember that Ayden and I had been there for an hour and a half.  We had been taking pictures of the 3 of us and then more of us with the bird.  She remembered nothing.  Oh, bits came back but by then we needed to leave.

I promised her I would come back soon and that when the weather cooled down I would take her to Target and soccer games and to my house for Sunday visits.  She asked "Why do I have to be here, though?"  To which I said "You have to live here, sleep here and eat here.  They'll do your laundry and clean your room and make sure you take all your medicine, but I can always come and take you out places.  But when it cools down."  And she says " Yeah, it's just too hot right now."  As if she's been out in this 100°+ weather at all this summer. 

She wants so desperately to have normal conversations.  To be matter-of-fact with details and comments.  I hurt so bad for her.

She walked us to the door and gave Ayden a kiss.  She then grabbed me and hugged me hard and thanked me for coming to see her.  When I entered in the code for the door lock she said "What are you doing?  How do you know what to push?"  I told her the staff had given me the code and she asked "What is it?"  I said "Very clever Mom.  You'll let everyone out!"  She laughed a little.  And then we left.  It seemed like a mostly good visit.

Mom called today and left a message.  The phone number was the Director's number which tells me she was in her office, probably so upset that she called from there and not her room.  Her message was pitiful.  She was sobbing that she couldn't do this anymore.  She's so aware of her condition sometimes that it terrifies her.  She doesn't want to go through this and knew enough today to realize that.  It wasn't about not wanting to live there as is much of her pain.  No, today it was about the fear she has and the pain she has about what this disease is and what she will become.  I have to write about it because today, after hearing her vm, if I dwell on it too much I will do that ugly crying thing and today, I don't know if I can stop.

God is merciful!

A song by Christian Songwriter and Performer, Laura Story, has a verse that says:

"We pray for wisdom
Your voice to hear
And we cry in anger when we cannot feel You near
We doubt Your goodness, we doubt Your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
But long that we'd have the faith to believe."

It is a beautiful song that always brings me to tears, wherever I am, for it makes me think about my mother.  This song carries forth the words I don't have on my own, up to our Lord and they embody all the pain, sadness, anger, doubt, loss and loneliness for my mother that I feel every day.  I sing along, tears soaking my face, and I am lifted up into the presence of the Lord and for that moment I feel His grace and His mercy.  My pain is not lifted, but I feel Him near.

Last week I was so down.  I really felt alone.  And yet He hears me.

On Sunday, both boys went with me to see Mom.  It was such a good visit!  Mom was more lucid than of late.  She was involved in a game of Bingo and asked us to wait so she could finish the game!  This was a first.  Usually she can't wait to be finished.  This was such a good sign.  She looked up at me and whispered "I love you" and I whispered back "I love you too!" and then she finished with "I love you more!"  My mom was my mom!

The 4 of us went to her room to visit so I could hang up the remainder of the photos and various things on her walls.  Several times she stated that by me putting these things up it meant she would be there for a long time.  I told her it did.  At least for now.  It wouldn't matter if I told her the reasons.  She wouldn't remember them later.  And explaining the whole rotten reason only makes her so sad.  So by agreeing to a shortened version I spare her, and me, the agony of the reality.

A couple of times she'd look at me and say:
"Okay, let me just ask this one thing.  I can't come  live with you, can I?"
"No, Mom."  I'd reply.
"And why again?" she'd ask.
And I would say "because I'm not home enough to take care of you the way you need to be taken care of."
To that she would say "You're right. You're right."

And then we'd be off discussing something else.  It was as normal conversation.  Normal for us, now.

We spent the afternoon looking at photos we found in a box and as we looked at them I would write the names of who was in the picture and who they belonged to so when she looked at them later she would remember.

It was a good visit.  She made jokes with the staff as she walked us to the locked door.

God is merciful.

The Numbness

I cry.  And then I cry.  You know that cry where you try to keep anyone from hearing it because you just need to sob and don't want to talk about it?  The one where your shoulders heave and the back of your throat hurts as you try not to make a sound?  I just did that.  Again.  It happens so frequently that I don't want to burden my family with it every time.  So I weep quietly.


My brain seems so muddled lately.  Partly because it's been 110° or more for the past week.  But mostly because my soul is in such a state of unrest.  I feel no peace.  I don't feel God.  I know He's there.  My faith is good; it's strong.  I just don't feel Him.  And I know faith isn't based on feelings.  Which is good since I'm not feeling stable in any part of my life right now.  We have our big, new, beautiful, forever house that we have been in for 2 months, but I can't let my mother live in it because I can't tend to her every minute.  I have a beautiful home on the market that I can't sell because the economy is so scary.  Work has changed and will demand my understanding and cooperation.  And it's hard to formulate a thought.  And that scares me as I brush away thoughts that I, too, will be afflicted with this life thief as my mother has been.


I feel tired.  A lot!  I am grateful for the days when the assisted living aides don't call, or my mother doesn't call because that means she's doing okay.  For the moment.  I want to call her.  I want to call daily, but I haven't quite gotten the hang of stepping into her world without it crushing mine.  She's my mom!  And I can't do a thing to help her.  She won't remember if I call.  She doesn't remember when I've visited.  I write it on her calendar and then have to remind her to look at it when she says no one comes to see her.  She's angry.  And lonely.  She's aware enough to know what she wants and how sad she is but then can't bring my image to mind when I remind her that she's talking to Laurie on the phone.


My husband said the most profound thing to me the other day.  He said "Even though she might not remember that you were there today, for that hour or two that you are there, she knows she is with someone she loves, who loves her and she will be comforted for that piece of time."


Thank you my sweet husband for saying the exact right thing at the exact right moment.  I love you!


L

I honor you, my sister, my friend!

 

I've been thinking about my sister a lot lately.  Especially now that I have taken on the role of primary caretaker for my mom by virtue of being the closest in vicinity.  My sister has given our mother, and Mom's entire family really, such a wonderful and profound gift!  I must honor her for her selflessness these past 5 years as she lovingly and dutifully cared for Mom. 

It began as a journey the 2 of them could share.  My sister was about to deliver her 4th child.  A baby girl to add to her brood of 3 boys.  And those boys are all boy!  A sweet baby girl to add to the mix!  We were all so excited and Mom especially, for now she could fulfill her dream of being a stay-at-home-nana.  Mom would retire and move to Oklahoma and live with my sister and tend to the baby as my sister returned to work.





Nana

It was a good plan.  But as the old adage goes, just tell God your plans..... My precious niece was born and everything was good.  It was fabulous, actually.  Mom was in love.  She always did love babies.  I think that age was her favorite.  Tiny, innocent and so fresh to the world.  For about 2 years, maybe 3, my mom would dote on the baby.  But, when my niece turned 3, we noticed subtle changes in Mom's demeanor.

She always seemed so sad.  We wondered how someone could be so sad when she had what she had always said she wanted.  We encouraged her to seek out friendships at the Senior Center, to volunteer at the hospital rocking newborns, to join a bible study at the church, to get out and go to the library.  Anything to get her out of the house and her routine of child care and her room.  She never did.  Nothing appealed to her.  So, as my niece required less care, Mom stayed in her room more.

My sister was such a champion!  She urged Mom on countless occasions to become more active.  She spent innumerable hours taking Mom to the doctor, to the store, to the pharmacy, to wherever.  At any point in time Mom was seeing up to 6 doctors.  And my sister took her to every appointment.  And then there were the meds.  How my sister kept track of when and how much and when to refill is a mystery to me.  As I have taken over that role (on a much, much smaller scale as her memory care facility now handles it) I stand in awe of how much of my sister's life revolved around our mother.

The very rapid descent happened about now.  More doctors to see as my siblings and I joined in, now very concerned, pursuing whatever illness we could hope it would be other than the BIG 'A'.

So today, I honor you Suzy.  For your constant care of Mom.  Your undying loyalty to her through her divorce, her breast cancer, her retirement, her broken arm, her heart stent, her loss of hearing, her depression and finally her Alzheimer's.  For opening your home and your heart to her.  For your unfailing devotion to her as it became harder to care for her and finally its affect on your family.  I honor you for honoring the rest of us.  I find myself feeling those same feelings you felt, and I hear you say to me the same things I said to you to comfort you, as I begin my journey with Mom.

I love you so much and I honor you,

Love, Lo

We are in the midst of this huge family......

I used to write.  Many years ago.  I'd like to think I was good at it.  Being able to write down what I was feeling gave me such relief from what I was actually feeling.  But years of raising children have pushed to the background any thought I might have given to writing.

But now, I find my heart is no longer able to hold back the anguish it feels.  I am compelled to write for in my writing is the sweet release of the unending, soul-wrenching agony for which the only end to it is, well.... the end.

My mother has recently been diagnosed with Alzheimer's Disease.  Up until now I knew little of the disease other than President Reagan was afflicted with it.  And then Charlton Heston.  Since my mother's diagnosis Glen Campbell has come forth with his own admission and has begun his Farewell Tour.  He now finds it difficult to remember notes and chords to some of his most beloved songs.  This disease is so cruel in its attack.

Saying I knew little of this disease was such an understatement!  In the weeks and months since I learned of my mom's condition I have become acutely aware of how insidious this disease is.  How it slowly robs you of a lifetime!  A lifetime!  How can you live a lifetime of joys and sorrows, health and sickness, births and deaths and then one day not remember any of it?

In thinking back, it probably began much sooner than we remember.  It didn't happen on that one day my mother said to my sister, after having lived with her for 5 years and helping to raise her 4th baby, "Who's taking care of my apartment?"  It was such a shocking question.  Like something just suddenly broke in her mind.  My sister gently reminded her that she had lived with her for 5 years and then called me terribly concerned.  It has been a steady and, much to our surprise and sadness, very rapid descent.