May they rest in peace...

After my last blog entry, a dear friend asked what was the weirdest thing that I found while cleaning/purging/screaming. I had some items that could be considered, but nothing that was the weirdest.

I now have another entry into the contest. I finally found a baggy of lids that I have been wondering about for years. They are the ones that Mom took off of every jar in the kitchen one year. I knew she hadn't thrown them away- that was apparently against her beliefs.

While it probably isn't the weirdest, it does bring me closure- and that's something those jars went to their graves without.

On a roll...

In the past 10 days we have taken 18 big black bags of trash out of this house and surrounding areas To be fair that includes every pillow and blanket that my mother ever owned in her entire life, at least it seems that way (and, yes, we donated what we could). Those take up a lot of trash bags. We have dragged 2 recliners, 1 couch, 1 love seat, 2 mattresses and 1 box spring to the curb to be hauled away. I have had 2 yard sales and taken the remains to Goodwill (another 8 bags of stuff). The scrubbing, the yanking, the lifting, the LAUNDRY!  Oh the laundry I've done. I washed everything that was going into the yard sale and everything that went to Goodwill, plus our own everyday laundry. And with all of that do you know what hurts the most?  My hands.  They are dry, cracked and just ache. I need to buy stock in Jergens.

PLEASE for the sake of your children, don't have umpteen collections of piggy banks, thimbles, boxes (Oh my, the boxes... wooden, plastic, card board, pottery, broken, missing parts, big, little, pretty, ugly, etc.), toys (including bags and bags of Happy Meal toys), copper, coffee mugs, books, etc.  And for the love of sanity do NOT keep things that you "might need some day"!

We're on a roll now, I tell ya!  On a ROLL!!

Layers of destruction...

Slowly, ever so slowly, I have been making my way through Mom's room and other stash worthy areas. Each day I seem to be reminded of the toll that Alzheimer's has on a person's life, not just social and health tolls, but the things that we find comfort in caring for while they are in our trust.

Now, Mom was never considered a great housekeeper, not even a good one.  If we came home and the house was neater than usual our first question was, "Who's coming over?"  She never seemed to care that most of our furniture were cast offs from friends and family.  None of that was important. There were a few things though that she cherished and treated well.  Her bedroom set fell into that category.  My parents bought that set long before I was born and Mom loved it. I learned how to care for wood furniture through her and those  pieces.  Heaven help the child who set a cup or a plate on that furniture.  She had thick protective glass pieces on the tops of each one.

Which makes the finally digging through the piles of stuff of the last 10 years of hoarding to the furniture beneath all the more heartbreaking.  This "is" her vanity.

While I was never a fan of the style, it was still a beautiful piece of furniture. The high boy and night stand that remain of the set are in slightly better condition.  She would be crushed to see what she did while under control of the disease.

To me, this represents all that Alzheimer's has done to my family over the course of its destruction.  It took a family and destroyed layers to the point that they can't be fixed.  While other parts are damaged but salvageable, standing tall and strong.  Unlike this vanity, my family and I have the gifts of hope, forgiveness and love.  I believe we will be just fine.  The furniture?  Not so much.

I am getting there...

Our journey through Alzheimer's is over.  The ramifications of the experience will last for years.

Here's one that I'm working through:

Mom became so agitated with the slightest activities around the house that I let a lot of things go in the last 2 years of Mom's illness.  We rarely cooked.  We did little cleaning besides what was absolutely necessary for health reasons. We didn't decorate for holidays.  If something broke, we found a way to make it work with minimal disruption to Mom.  Needless to say, the house is a mess.

It was only 6 months ago that I chose to place Mom in a facility that could care for her better than I could.  I thought, "Wow!  I can do things again. I can finally get the house put back together." Unfortunately, these energetic thoughts were followed with an unbelievable sense of hopelessness and apathy.  I just didn't care.  I don't know if I believed that she was going to be sent home again (it entered my mind) or whether I just needed the time to lick my wounds and heal a bit.

Whatever the reason, since Mom's passing, I have been filled with a sense of urgency and energy to get things done.  I need to get up and move.  I need to clean, fix, and purge.  I need to work.  And I have been.  The house is still torn up, it always looks worse before it can look better.  But, I am getting there.

As I said, I will be working through the repercussions of this journey for a long time.  It feels good to take a first step back to my life.

No tears...

It didn't end the way I imagined.

The first call from hospice letting me know that Mom's condition was deteriorating rapidly hit me hard.  I think part of my brain actually considered her "outliving us all".  Unrealistic, I know.  But, it was something that we said, and probably believed, during the stressful times.  Physically, she was strong and healthy for a woman in her 80s.  The Alzheimer's had progressed slowly.  So very slowly. There was no reason to think it wouldn't continue in the same way. I knew that she would be there on my next visit, yelling that she was hungry.

But, she's gone.  She's been gone almost two weeks.  I am actually happy that she is gone.  I am finding that most people are shocked by that.  I shed many tears for my mother over the years. I grieved for her each day that I was forced to watch her slow and cruel death. My children and I said our goodbyes to her many years ago.  She was spared the final suffering that many Alzheimer's victims are forced to endure.

So, no, I have no tears for my mother's passing.  I do have a sense of relief and an overwhelming feeling of gratitude for her final and glorious peace.  I know where she is and, more importantly, she does, too.  She is whole.

Alzheimer's did not win.

Eternal peace did.

Soon...

For so very long things have moved so very slowly.  Mom's journey seemed to take forever. I saw the early signs almost 15 years ago. Now it is all just moving so unexpectedly fast.  Hospice called yesterday to prepare us for what is coming. After all of these years you'd think that I would be ready.
I'm not.  It hit me hard.  I'm getting through this horrible waiting by remembering what I have spent countless hours praying and wishing for:  Her peace.  I am mentally happy that she is about to go home to a peace that we cannot comprehend.  But, it's my mom and I am going miss her and feel a huge whole with her passing.

Surprisingly, this grief that I feel is almost comforting.  I thought I would feel little but relief that my obligations are through.  It's wonderful to know that some compassion remains that was not stolen by the cowardly thief that is Alzheimer's.

I thought I was ready...

No matter how much you've prepared, how much you think you're ready, sometimes it just sneaks up on you and whacks you upside the head.  It's a hard whack, too!

You can pretend you did not see me...

It's been a long time since I've been here.  I've thought about stopping by but wasn't sure what to say. It feels a little bit like running into an old friend at the grocery store.  You wonder whether to speak or just pretend you didn't notice her.  You were good friends so you decide to go ahead and say something and then instantly regret it.  Too much time has passed.  You both talk about the kids, the weather, anything that isn't too personal. You agree to catch up soon, knowing you won't do it.

This blog was the best of friends to me.  It listened, without judgement, no matter what I said or when I said it.  It was always here.  But, it was about my journey through Alzheimer's.  And, that journey took a detour that isn't as all-consuming as it once was.  Mom is still in the nursing facility, still under hospice care.  I had a meeting last week with the hospice personnel and her nursing staff.  It was more of an update on her condition (same) and trying to find something that will comfort her.  I wish I knew the answer to that question.  I've wondered that for most of my life.

So, here I am trying to share the journey.  But, now it is just about me. It all seems too personal. This blog, like the friend in the grocery store, just feels awkward. I should stop by and catch you all up to date. But, I think next time I might just pass by without stopping. Or maybe I'll ask you about the weather.

Just an update...

I've been trying to write something on here but the words feel forced.  I guess I will start by updating Mom's situation and condition.

After being told that there was nowhere to place Mom, a caseworker finally suggested that they look for a hospice bed instead of a nursing bed. Within 24 hours she was placed into a facility.  And just that quickly our lives changed.

Mom is doing well at the facility. The staff is attentive and kind to her.  Her condition has definitely deteriorated since she left home in March, but I would still consider her strong. She looks frail and helpless at times. Other times she is as demanding and forceful in her wants as she ever was with me. For the most part, she is still eating well.  The staff is efficient in getting her snacks between meals and takes her demands in stride.

Mom's placement has left me and my family with many more freedoms.  No one has to stay behind and take care of Mom. We can do things as a family that we haven't in years.  A simple thing like going to the movies is a reality for us now.  It's wonderful.  Not surprisingly, we've adjusted well to the freedoms.

Personally, it's been difficult adjusting to her being so far away and no longer being under my care. I miss her.  I want to see her, but logistically, it is difficult to visit her often.  When I do visit, I seem to agitate her more than comfort her with my presence.  She isn't comfortable with displays of affection for more that a few moments at a time.  She doesn't recognize me at all anymore. The visits are more of a check-up on her care than a visit to Mom. There is little I can do for her but be her advocate. 

I'm having a hard time knowing what to do with my time. I find myself just sitting, thinking there are things to be done, but not having the energy or desire to do them.  I'm feeling a little lost. I've applied for a few jobs, but, so far, no one is interested. I think that is adding to my apathetic attitude.  I need to get up and move.  Maybe I'll do that tomorrow. 

No more hoops...

Mom is still in the hospital. And we are still searching for a home to place her long term.  The decision to place her was much easier than the reality.  From her having an insurance that is not accepted by most facilities, to government agencies failing to do their jobs (which prevents me from changing her insurance), finding a bed for her anywhere within a 2 hour driving distance has been a difficult task.

Yesterday, was a series of highs and lows, mostly lows.  They found a place for her in a facility that I do not like.  But, the alternative is bringing her home to an ill-equipped, untrained, and desperate person to care for her.  For many reasons, in home help is not an option.

Just as I had resolved myself to the non-choice, the insurance case worker called and said that the space for her was no longer available.  Add to that the fact that Mom's case worker for Medi-Cal still has not updated the system to reflect that I am Mom's legal representative (after signing the document 3 years ago and a request 3 months ago to correct the oversight) which leaves Mom without a voice. I cannot make any changes to her insurance to make this move easier. 

I spoke to a woman yesterday who has been caring for her Alzheimer's mother for 13 years.  She needed Social Security to help her resolve something at her mother's bank, only to be told that they could only speak to her mother.   They did not recognize the legal documents that she has that has made her the voice of her mother for the past 13 years.  The woman had to get a lawyer involved to resolve the issue. 

How many families are forced to go through this?  How many loved ones are being held hostage by a system that is broken and has no compassion for the very people it is supposed to protect?   Being a caregiver is difficult enough without having to jump through never ending hoops to do it.

It was just misplaced...

Mom has pneumonia.  Again. This is the third time and the second time that she has been hospitalized. And I just have to say it, having her hospitalized is more tiring than having her home.

Every doctor that comes in contact with her asks me the exact same questions over and over.  I want to place a sign on my forehead that says, "Read her chart!" I could understand the curiosity if it was something that wasn't there.  But, calling me a 4:00 am to find out what medications she's on (that are listed in her chart) seems a little ridiculous to me.  Just a little.

And each doctor has a different answer for my questions. One in particular is "Does she have Congestive Heart Failure?"  I have received these answers, "Yes. It was diagnosed during her stay in November.", "No.",
"I don't know.", "I haven't researched it."  "With the instructions to not extend her life with any extra measures, it isn't important at this stage.", and, "Yes, she does." Well, as long as we can all agree. 

But, one of the good things that I've found in all of this is my compassion.  It would be very difficult to see anyone lying in a twisted fetal position and sobbing and not feel at least a twinge.  When it's my mother, it breaks my heart. I tried to talk to her while holding her hand as much as possible, but she kept clawing at me and twisting my fingers until I had to pry my hands away and tell her that she was hurting me.  I cannot even imagine what is going on in her mind.  It must be horrendous.  I know it is devastating to watch. 

The next step is to find a place for her that will help her find comfort and some peace.  I am content with the decision to allow others to care for her because I cannot. 

I must choose to change mine...

My previous post was about judgement from the outside.  This post I'm going to talk about the judgement that comes from within me.

Somewhere along this journey, I lost some valuable things (and I don't mean my credit score).  I have lost my compassion and my patience.   

So, where did they go?  How can I look at what my mother has become and not feel compassion?  That's an easy question for me to answer.  It's because I don't have any patience left.  Those two virtues normally go hand in hand.  The compassion for another living being demands that you respond with patience.  The patience allows you the time to find compassion.  Neither is worth a darn if you don't have the other.

How many times must I clean disgusting things from walls and finger nails and clothes and linens, only to have to clean them again before I have her completely dressed again?  Today it was four times within a 30 minute period.  20 minutes into which I had already left my daughter standing across town waiting for me.  30 minutes of disgust and a person who can't follow any instructions, much less something as simple as "Don't touch that" or "Stand up".  Yes, my mind knows that she is sick.  But, my patience is trying to contain a mess that is beyond my tolerance level.  The patience is gone and the compassion is dead.

I recently watched someone deal with Mom with nothing but kindness.  Mom responded, for the most part, with what I would consider calmness, at least in comparison to her normal behavior.  I watched these 2 interact for almost 45 minutes.  I walked away from that interchange feeling like the stuff I am forced to clean up too often these days.  How much of the behavior I receive from Mom is a direct result of the impatience that I give her? 

I see videos of Alzheimer's victims and they aren't like Mom.  I know that if you've seen one Alzheimer's patient, then you've seen one Alzheimer's patient.  They are all different.  But, Mom is so very angry and bitter.  Mom is never happy.  She screams at me that I haven't fed her for 3 days as she is chewing her food and after I've spent a half an hour coaxing her to eat the food.  I spend the majority of my time ignoring her or drowning her out.  How shallow am I that I want my Mom to be nice to me?  To recognize that I've done all that I can? 

I know she cannot do either of those things. As I said at the top of my page, "She cannot change her behavior, therefore, I must choose to change mine."  The part of me that can still be fair, knows that I can do better.  It knows that I can be kind.  And, I believe that this won't be over until I've found the patience to allow compassion back into my heart.

I am just getting started...

So many thoughts are running through my mind right now.  I have tried to make some sense of it all.  When that failed, I came here. Writing it down always helps calm my mind so that I can process it all. 

A few entries ago, I described the financial portion of this journey as "the unspoken, embarrassing, and most difficult part of being a caregiver".  Someone whom I have never met, commented that it sounded like I was begging for handouts and sympathy.  And, that response is why the subject is so often unspoken and embarrassing.  We don't talk about it because it makes those around us uncomfortable.  And, that just reinforces the reasons that caregivers feel alone.  But, I'm saying it again and anyone reading this is welcome to take it however they want to take it.  

I am broke.  Despite working and providing for myself and my family for almost 40 years, without asking for handouts or sympathy, I am broke.  If reality makes you uncomfortable, then another blog, maybe about gardening or scrap-booking, might be more your cup of tea.

I am already feeling better having gotten that off of my chest.  I can now see that tonight might be a 2 blog kind of night.  I have other things to say, but on a completely different subject. 

My apologies to Frozen...

We had almost forgotten what nights from Hell are like.  Thankfully, Mom is here to remind us lest we ever forget.

One of the highlights of our recent night from Hell, was Mom standing in the middle of the room and loudly singing, "Is there anyone awake?"  I honestly thought I had made that up in my exhaustion. Turns out that it happened.   Well, that had me thinking how wonderful it would be if it was an actual song. 

Here's how I think it would go (to the tune of Do You Wanna a Build a Snowman?)--

Is there anyone awake?
Come on, I'm hungry NOW.
You never feed me anymore,
Or take me to the store,
Three days, I could eat a cow.
I used to be your mother.
But, now I'm not,
I wish that I knew just why.
Is there anyone awake?
Yes, you have to be awake.

Is there anyone still reading? 
You don't have to still be reading.

Okay, bye. 

I cannot ask...

Sometimes, the weight of all that I cannot speak, all that I cannot share, and all that shames me, explodes into pain that cannot be soothed, cannot be contained, and brings me to my knees with uncontrollable tears.

I know that I am loved, yet I feel alone.  I know that there are answers, yet I cannot find them. I know that I need help, yet I cannot ask.

Catch up time...

I'm not going to lie and say that things have been going smoothly. Mom's still home everyday with me since her last battle with pneumonia.  We are having new challenges and old ones are worsening. 

-My dear cousin loaned us a lightweight wheelchair.  Mom hasn't regained her strength from the first bout of pneumonia and was having a difficult time walking even short distances.  It was a challenge to do something as simple as running to the grocery store.   So, the use of the wheelchair was a good solution.  Or it should have been.  While rolling Mom around the store helped with the mobility problem, it did not help with the attitude problem.  We tried 3 different times to shop this way and left the store in frustration each time due to Mom's loud screaming.  If we stopped pushing she began yelling.  Loudly.  At us.  At strangers.  At shelves.  At products.  You get the idea.  So, we will move on and find another way.

-Mom's eating is getting worse.  She demands food practically non-stop.  She screams at me that she is "hunner" while she has food in her mouth.  I won't say that she isn't eating.  We get food into her.  She just doesn't realize that she has eaten.  And the yelling and negativity are taking a toll on me. 

-I hesitate to type this one.  Each time that I talk about her sleeping habits, we have a horrible night.  But, she really has been sleeping well.  If I have one piece of advice to share with other Alzheimer's caregivers it would be this:  Make sure your loved one is in bed within 10-15 minutes of giving them their sleep medications.  Dementia patients will fight the effects of sleeping pills to the point that their bodies don't even recognize that they are in their system.  It's crucial that they are in bed when the pills begin to take effect.  (Thank you to the lady in my support group for sharing this info.  You've made my life so much easier.)

-This one is difficult to talk about, but I promised myself that I would share it all on this blog, no matter how painful it is to discuss.  In the past year, I have realized that the unspoken, embarrassing, and most difficult part of being a caregiver isn't in the giving of care.  It is the financial toll that falls upon so many caregivers.  My savings are gone.  The only money I have coming to me is through my mom and her care. And it isn't much.  Take her out of the picture and I have no income.  And no guarantee of a job to replace this one.  I went into this as the sole provider for my family.  I have to come out of it the same way. 

I am sharing  this to explain why we haven't placed Mom in a permanent home.  I know people have wondered.  I find myself in a Catch-22.  I can't place her until I have a job.  I can't find a job until she is placed.  It's just that simple.  And that complicated.  So, until I find a solution she will be here, yelling at strangers, screaming for food, and sleeping better than she has in years. 

Whoda thunk...

I was just thinking...

All of those years ago when I was born into a family of all of those boys, who would have thought that I would be the one with the cojones to do what needed to be done.  

The hard choices...

Mom is sick again.  We have been careful to keep the yuckies that are everywhere this time of year from her. Apparently, the yuckies are more clever.  This time she brought them home to us.  Not wanting to put her through another month long hospital ordeal like the last time she got sick, I was at urgent care the second day of her cold.  But, it was already too late.  It had already turned into pneumonia.

The doctor we saw was wonderful.  He listened to me when I told him of the experience in November when they basically strapped her down for a month in order to treat her for pneumonia.  He then allowed me to make the choice of whether to treat her at home or to send her to the hospital.  He politely, and tactfully, spoke about reaching a point that going through heroic measures in cases like Mom's is not always merciful or in her best interest.  I am so grateful for his compassion and understanding.  I asked whether I could be held legally accountable for not admitting her to the hospital if she ended up worsening.  His response was that he, as her attending physician, at this time, did not see the benefit of hospitalization for someone with Alzheimer's that is as advanced as Mom's.  He added that restraining someone who has a terminal disease and has no ability to understand why she is being restrained,  just to treat her for a secondary condition, was cruel.  He made notes in her chart in support of my decision to treat her at home.  As long as she is comfortable and doesn't worsen, she will be at home.

Mom has advanced Alzheimer's.  She is terminal.  I don't want her to die.  I truly don't.  But, I don't want her to live the way she is living. Scratch that. She isn't living. She is existing.  What little dignity that Alzheimer's has left her will soon be a memory.  There is no hope of a cure.  There won't be in her lifetime.  But, I do want my mother to find peace.  And if that means that I won't do everything in my power to "save" her, then so be it. 

A fun evening...

It's been a fun evening.  No, really.

-I heard a quiet whooshing sound a little bit ago. It lasted about 6 seconds.  Silence. Whooshing.  Silence. Whooshing.  I got up to see where it was coming from and found Mom in the hall.  She had her mouth next to the switch and was blowing on it.  I guess she was trying to "turn it on". 

-While I was sitting in my usual spot on the love seat, blocking Mom's escape route, she pointed at my arm and said, "Excuse me.  Would you mind if I broke your right wing?  I'd really like to crush it."

-Awhile later she was sitting "quietly" across from me, looked up and said, "I can't wait until I get my fingers all over you."   After the incident in the hall, I let that one pass.

-And, finally, while Katie and I were playing fetch with the dog, she yelled, "Stop it!  We don't use animals for sex!" 

I'm glad she remembers important things. 

10 signs...

10 signs that I am a caregiver for an Alzheimer's victim:

 1.  I keep earplugs on my person at all times. I can still hear, but the yelling and complaining just isn't as mind-numbing.

 2.  I think that 4 hours of uninterrupted sleep is a good night.

 3. I keep the equivalent of a baby diaper bag with me when I go out.  Snacks, diapers, wipes, bottles (I enjoy the little cocktail sizes that the airlines serve), etc. 

 4.  People remember us wherever we go.

 5.  We have places that we can't visit anymore because the people remember us a little too well.

 6.  We stay at the front of stores because the farther we go the farther it is to come back out when she's having a meltdown.

 7. I can tell by how she's breathing whether she's heading for a tantrum.

 8.  I react politely when told that "You're lucky to still have her."

 9.  I respectfully accept the same well-meaning advice that I've heard dozens of other times and act like it's the first time I've heard it.

10.  I mentally strangle strangers every time someone says, "Oh, isn't she cute!"



 

It is time...

It's been quite awhile since I posted.  I just don't seem to have much to say.  Things are more of the same a few new challenges.  In talking to a couple of people, I realized that many thought that Mom was in a facility already.  She's not.  She's still at home as I try to place her.  This time, her Alzheimer's doctor is helping us. 

She just started back to day care this last week.  In the two months that she was out, no one at the facility told me that she had to have a medical release to return.  It makes sense, but it wasn't at the top of my worries at the time, and it would have been nice to have been told.  We finally got the release and Mom is going 4 days a week again.  I've spoken to a couple of the workers and Mom seems to have calmed down just a bit.  One of the aides, who Mom was especially close to, said the Mom seems to be spiraling downward.  She doesn't recognize people by sight anymore, including the aide. 

I see it in daily activities.  She rarely understands basic dialogue anymore. She saw her neurologist and he immediately commented that her language has deteriorated.  For the most part, she isn't capable of responding to simple directions.  Something as easy as asking her to wash her hands is met with confusion and frustration.  She has begun eating with her hands, even something as messy as spaghetti.  Her bathroom habits are a constant challenge and that is a major concern.  She can't do it all by herself but refuses help.  

Overall, there is nothing new that is earth shattering.  She's still hungry all of the time and is eating most everything that we put in front of her.  But, we are at the point that I can't care for her as she needs anymore.  For her sake, and ours, it's time.