Hospice

This is the last of my 4-part, 5-years-later series, for now. Thank you all for the outpouring of love and support and kind words as I've posted these, one by one. 
 
~~~

Two weeks ago, the nursing home called to inform me that, since her last visit to the hospital, Mom's health continues to decline. In the last 4 weeks she has stopped feeding herself, and she is no longer walking. She may have another UTI, hence, another ER visit was pending.

I interrupted the nurse: "This is a big problem. You can't treat her and the hospital doesn't want to. I need help." I told her everything I wrote in the last post, and asked her to put me in contact with a social worker, or Hospice, or anyone that could help our cause.

I spoke with a social worker next, who initially offered up monthly support groups. I'm sure these are invaluable to many people, but I've been engulfed in this disease since 2002, and I can't think of anything more exhausting than to show up and drown myself in it with 30 other people every Tuesday night.

NOTE: That is not advice from me! It is sheer, fabricated speculation! I don't know if it's 3 people or 30—it simply wasn't what I was looking for.

What I was looking for was medical and spiritual solidarity during the next inevitable crisis.

I need someone to meet me at the emergency room--and to give me guidance about whether or not to let the staff order a $7 antibiotic. I didn't know how to make that call 8 weeks ago, and she got the antibiotics, and now she's worse, and—crap! Is that my fault? Was I supposed to not do that? Was that what the ER doc was trying to tell me? Did I miss the wink-wink, nudge-nudge?

I still don't know what I was supposed to do at that appointment in December.

Ten days ago I signed my sweet mother's care over to Harbor Light Hospice.

My mother is not at death's door. She is, simply, declining as her disease advances. She now has her very own nurses, twice a week, and 2 CNA visits a week. We have our very own Hospice social worker. They will all monitor her closely, and take their time with her. She gets an extra bath, and lotion on dry winter skin, with a few extra luxuries that the overworked and overwhelmed staff of a financially struggling (Hello, Illinois) nursing home* cannot afford. She has a new bed that suits her needs, and a comfy new wheelchair with a high back and foot rests.

These amazing people will also be there when I need them. They can prescribe medicine and bypass the emergency room, or they can advise me, when it's time to stop the meds and keep her comfortable.

I met with all of them this afternoon at the nursing home, along with the Hospice chaplain. A female chaplain, I like her. As long as I'm spilling my guts, I'll confess that I think I feel more comfortable with a female chaplain. She followed me from the meeting to Mom's room today, and she baby-talked Mom just like I want her to: "Look at that great eye contact!" and she says all of the right things to me, like "Oh, my goodness, what a great job you have done," and "oh, that must have been so hard."

I didn't feel silly asking her to take my picture with Mom, and she remembered my telling her that Mom liked soft things, and she's raced for her fuzzy pillow when Mom became agitated. 


There's an odd juxtaposition at play for me right now: I'm ensuring comfort for a pain-free passing when the time comes for my mother, which is such a grown up thing to do. So mature and responsible, for a mere 54-year old. At the same time: "My mommy! Will you please take my picture with me and my mommy?" I'm really not sure I'd let myself be such a big baby with a male chaplain.

I like our entire "team!" Her nurse is George, and the chaplain is Karen, and the social worker is Deb,  and I don't remember the names of the other two offhand because I'm stressed but it is an incredible relief to have these 5 in my corner.

~~

So here we are again, rolling with Alzheimer's punches. Each new round of decline has challenged us, at times pulling the rug completely out from under. We stand back up, dust ourselves off, find a solution, and then sit back...and wait for the next.

From here on out, I think, we'll be ready for it.

____

*My mother still has caregivers at Champaign County Nursing Home. I can never say enough good things about them, and I feel blessed to have so many people that have taken such good care of her in the last 5 years. Even when they are tired, or when there is a miscommunication, or when I'm not quite sure where Mom's blouse came from—I appreciate each and every one of them, and baby--dont' sweat the small stuff! They picked up where I could not, and I will always be grateful to them.

"You May Have to Decide if You Want to Watch Her Bleed to Death" --ER Doc

In December, I got an early morning phone call from the nursing home, asking me to meet Mom at the Carle Emergency Room: she was vomiting blood.

I arrived at the ER just as the ambulance did, to find Mom agitated and clutching her abdomen—but not vomiting. She had no fever. She would not open her mouth for the doctor to check her throat. She had to be held down to put an IV in her arm, had diaper and bed clothes changed twice, and finally fell asleep. Shortly after they calmed her, the ER doctor finally came to me and asked:

"How aggressive do you want us to be in treating her?" 

When I asked them what their diagnosis was, they didn't have one, but wanted me to tell them how far to go to find out. "What do you want us to do?"

They were offering to not even investigate. Was that it? Because then what? You send her back to the nursing home that sent her here? Am I supposed to make some suggestions? How about some antibiotics, will that work? Should we test her urine? Why am I here?

A second GI doctor explained to me that a scope would be one test they could perform to diagnose, but the suggestion came with disclaimers--Anesthesia. A scope. Invasive. And she asked me the same question:

How aggressive do you want us to be?

Well. A scope sounds like a good idea, doesn't it? How invasive it? It's just a scope, isn't it? No cutting or anything? Any kind of diagnosis at all would be a really nice starting point for me, if no one is going to help me out here.

Oh, I got the underlying message all right: Ehhh...this isn't really a life worth saving. Because no one, ever, in any emergency room I've ever been has asked me whether I'd like to skip the stitches or the scope or x-ray.

The first ER doc returned, and, trying not to cry, I made what I felt to be a sincere appeal: "A proper medical decision is outside of my wheelhouse. I understand there is little quality of life for my mother, and I'm not interested in extending it for no reason. I just want to be kind and keep her out of pain. I need some guidance." I write that like I was so strong and stoic, but believe me: I was shaky and squeaking.

 He paused for a long moment, and then breathed,

"You may have to decide if you want to watch her bleed to death." 

So much for not crying—I can still feel the wind go out of me. That's the doctor's advice, based on my question?  Can you toss another option at me? Watching her bleed to death may be the kind option, based on your professional medical opinion?

And then, trying to get a grip. Deep breath. Well. Asked and answered. Maybe I should wrap my head around this. Maybe I should prepare myself  to watch her bleed to death, because if that's what it's going to be, I'm sure as hell not going to make her do it alone. When?! This afternoon? Will they leave me in a room with her? Will she vomit all of the blood until she dies? Will it come out of her ears and eyes and nose and anus? Will her blood run off a table or a bed and get all over me?

~~


I was horrified and crying and sick to my stomach as they admitted Mom to the hospital, and I followed them up to the room to face yet another doctor asking what I wanted them to do. In the end, I opted to have her scoped.* The "invasive" scope took 30 minutes and revealed that there was no internal bleeding, no ulcers in her esophagus, nothing at all that would explain vomiting blood.

She stayed in the hospital a few more days, where--in comparison to the other hospital in town that Clint's mother goes to frequently--I felt to be, along with my mother, an enormous annoyance.

They were busy, had nothing to report, sure they could call me--what was my number again? A friend sat with me while I waited an hour across from the nurse's station for an update. I finally approached the nurse, where I could see her sitting for the last 15 minutes--and she could clearly see me, but I had been told to wait--and she sighed, "Do you want me in there?" Not "how can I help you?" or "I'll bet you'd like an update!"

I showed up at one point to find the door to Mom's room (and only Mom's room) closed. I'm sure there was a good reason for that, but it didn't comfort me. It felt like they wanted to silence her, when I wanted them to keep an eye on her--she can't use a call button, if she falls out of bed. She does not have words to call for help.

By comparison, when we take Clint's mother to the other hospital in this town, the first thing they do is ask us to take a marker and write our names and phone numbers on the white board in her room. They greet us by name, give us updates, and call Clint at work if he can't get in to see her.

I wanted a little bit of that, regardless of my mother's mental state. I wanted someone to say "I'm sorry, the blood work hasn't come back yet," or "she slept through the night," or a "Honey, we're doing all we can. We have your number and we will call the minute we find out."

This is not sour grapes. I am not a sensitive person that is constantly, as my son says, "butt-hurt" over every infraction. I don't feel entitled to much, and I don't imagine conflict where conflict does not exist. I realize that I wasn't the patient in that situation, and that the staff didn't really owe me jack, if they were taking sufficient care of my mother. I was constantly patient and polite, even when I felt distressed. A nurse in one station argued with me that my mother used a wheelchair. When I told her that my mother had never used a wheelchair, and walks to lunch every day, she corrected me. "No she doesn't." Ma'am. My. Mother. Walks. I'm not making this up. I walk with her. She feeds herself.


But in the end, that's all I had in her defense: She walks and she feeds herself, and I ended up feeling somehow shamed and pathetic that I expected that to be enough to warrant a bit more dignity.

There was more to that day. I was told I could stay in the recovery room for Mom's procedure to calm her, then scolded and kicked out to the waiting room, then dragged back by the first nurse. Twice.


I know there's protocol, and you have to wait somewhere, and I know there was miscommunication, but in the midst of preparing myself to watch  my mother bleed to death---it was just one more conflict that I found myself in the middle of, wondering "what in the hell is happening?"

~~

My mother was sent home after 2 nights in the hospital. She was, I found out from nursing home staff, finally, diagnosed to have had pneumonia and a urinary tract infection.

In the end, after this day, I've become very, very clear about what I want, for my mother and for myself.

I am still dumbstruck that a doctor that told me to consider watching my mother bleed to death never said "we'll keep her comfortable," or "would you like to talk to a social worker?" or "perhaps you should call hospice" or any number of other potential avenues that it has to be clear that we--my mother and I--needed.

Dumbstruck and Furious.

And we will not do this again.

~~~

*I am circling back to amend this post and acknowledge that there was one wonderful male nurse (Tim--was his name Tim?) that helped me sort things out to help make my decisions. He was sweet to Mom, calling her hon, and saying comforting things to her as he helped her out. He told me a joke about a duck asking the pharmacist just to put the chapstick on his bill. He made me feel, at the end of that crazy first day, that she was in good hands, and that I could get home and get some rest.

A Typical Visit

This photo was taken last summer, and it's typical of a visit with my sweet Mama. During the day she sits quietly in the lobby with the other residents. I can no longer get her to look at up at me, so I get down on my knees to look into her eyes, to talk to her.

I usually start with "Hi, Mommy," over and over, until she will finally look at me, for a split second, before she looks away. She grabs my hands, and holds on very tight, then starts talking. She's incoherent and agitated, almost yelling "Dah DAH DAH DAH." It sometimes comes out as "DOD DER" and it is my own imagination—and flicker of hope—that she is saying "daughter-daughter-daughter."

She becomes increasingly agitated, usually, and starts with a few choice words that she picked up from the other residents. "No! Dammit!"  Yikes, she'd be mortified if she knew she was swearing.

So, I get her into a tailspin, and then I... don't know what to do. She's off and rambling, and we watch for awhile, and then I kiss her cheek and tell her I love her, and we wander away, leaving her, safe with the nursing home staff, hoping that she'll calm down pretty soon.

Sometimes the idea of riling her up and then walking away is too much, and I just go look at her. I may pat her shoulder or head, and stand around for a few minutes, kiss her cheek, and leave.

While I don't discourage friends and family from seeing her—I would never deny someone from visiting her—I also no longer encourage it. I have watched her progression, and developed a certain immunity to feeling devastated every time I see her.

On a selfish note, it is very painful for me to witness loves ones visiting her. While I can say, over and over, "she will not recognize you," or "she no longer talks," people will inevitably tell me they understand—and then tell me to tell her hello, or to ask her if she remembers this or that, that happened when they were kids. I've walked loved ones through the nursing home corridors so many times, giving them stronger and stronger warnings on the way in, "This is going to be bad, ok?"

And then, I stand back and watch them try to talk to her, and I watch understanding dawn on them. I stand there and I see myself in the circle of their understanding, and I see how damned sad it is, and I gather them up, and we cry all the way back out.

"How is your mother" is a painful question to me, now, and a big catch-22. I want people to care about her, but I don't have a lot of nice answers. I have a stock of generic responses: "Physically healthy," "Pretty much the same," and "She's fine."

I know they're all misleading answers, but she was diagnosed with this disease almost 15 years ago, and it is exhausting to hash out how she really is every time someone asks, for a decade-and-a-half. There's rarely anything new to report, and never anything positive. I begin to feel like I will suck out your soul if I give you an honest report every time I'm asked how she is. So, "the same" is what I hand out.

You know, my mother always taught me not to say anything, if I had nothing nice to say. I'm finding it even more difficult to immortalize these truths in writing. The truth of the matter is that while my mother is "the same," Alzheimer's runs its course, and her condition declines. I am preparing myself to face some difficult decisions on her behalf.

I will be respectful and kind and ensure her comfort and dignity when it's time to make those calls, because she taught me no less.

5 Years Later...

My last post on this blog was nearly 5 years ago. It was in 2012, and my sweet mother was coming up on her 70th birthday. She is now approaching her 75th, and here's where we—where I—am, now.

~~~


When my sister was ill with ovarian cancer, we were continually perturbed with everyone that chimed in, "Oh, you have cancer? Before my father died..." or "Yes, I lost my sister also..." and every other story of everyone you ever knew that died of cancer. While we talked candidly on a daily basis about a prognosis that we dreaded, the stories of YOUR friend dying did little to comfort us. Putting it nicely, we wanted to tackle you.

Oh, I get it. When I'm now presented with a friend or family member that has been diagnosed with cancer, it damn-near kills me not to mention my sister. Hmph! Mention it, I do not—unless I do, accidentally, because from this side, it feels like such a show of solidarity—and then I instantly realize that I need to be tackled.

~~~

By the same token, I've no longer wanted to write about my Mother here.

Because there are so many out there, in the early stages. And there are so many good years left, and so much laughter and love to celebrate, and I don't want to be the one to put the fear of God into you about the future.

If you're facing this, now, with a loved one in early stages of Alzheimer's, I—an expert on only one woman with Alzheimer's, that has no idea what you are going through, and so you are invited to tackle me—want to tell you to:

Laugh.


Celebrate what's left. 

Just agree. Don't correct, or teach, or insist, or shame. There's no logic at play here. Roll with it.

Did I say: ROLL. WITH. IT?

Because, Roll with it. 

Sit back. Analyze. You will find utter brilliance in your loved one's substitutions in an attempt to communicate.  My mother once forgot how to tell me she was crying, and instead she told me: "There were tears in my house."

Tune in.  I know you just got off work and raced over to do the dishes and heat up a microwave meal, but there were tears in her house, dude.

Express your amazement. They will rejoice that they discovered a work-around that you never thought about. It's lovely when they're still smarter than you are! Acknowledge that.


Hug. Love. Sing.

Write it down, for God's sake. You're going cling to, and adore every last crazy word you had together. Facebook TimeHop reminds me that we did it right: We held on, baby, and we make the best of it.

And finally:

Do not, for the love of God, read the next couple of posts. Because you do not need this crap right now.

But.

Bookmark them. You might need them in the future...because when MY mother was in the final stages of Alzheimer's.... 

::tackled::

Amazing Grace

I'm long overdue with a post about my mother since placing her in a nursing home 1 year ago. I've made a few attempts, but my life has changed so drastically as a result of not being her sole caregiver that I keep veering off and yammering about myself.

I'll try to keep me out of it, then, and tell you: Mom is healthy and happy, and I couldn't ask for a better facility than Champaign County Nursing Home. She is healthy and safe, and loved.

Her condition has continued to deteriorate. I don't believe she knows my name, but she knows very well who I am, gasping each time I walk into her sight, and exclaiming "oh, I am so HAPPY you are here."

Interesting is that she remembers, full well, Clint's name; she is quite enamored with him. I think it's because I speak of him, and close each visit by asking her what I should fix Clint for dinner. The answer, after some thought, is always "bacon."

In general, we walk, and we sing, and she tells me she will give me fifty thousand dollars. Over and over, this is our routine. Amazing Grace, we still sing, along with Jesus Loves me.

Amazing Grace is...what we have left.

I am, like she was, when she was cognizant, shy about raising my voice. And yet, I walk the halls with her, singing Amazing Grace, for every passerby to hear. I can do it when I am alone with her, but I've found that if friends or family join us, I tend to step outside and look at our overall picture, and the song buckles me.

One of my best childhood friends, who lived down the street and around the corner, has placed her  mother, also, in the Alzheimer's wing of CCNH. When I visit my mother, I visit hers. I stop every time to tell her, "Hi Eva, I'm friends with your daughter, Nancy. I used to spend the night at your house." She always, lovingly, tells me, "thank you for telling me that."

Likewise, Nancy, who lives 90 miles away, lets me know when she has spoken to my mother. She brought her granddaughter to visit her mother yesterday, and sent me this message:

I saw your mama yesterday, I was holding Stella (she was asleep), I said "hi, Eleanor"' she said "looks like you have a baby," I said "yes, she's tired" then your mom said "you know what?" and she started singing Amazing Grace, she sang the first line, then I sang the second back to her, (of course tears in my eyes) then I told her I would see her later.

Sigh. This ol' world. If I hadn't promised not to make this post about myself, I'd tell you all about how much I love my mother, and how much I love Eva, and how much Nancy's singing with  my mother just about brings me to my knees. Who would have thought, when we were mucking through 4th grade together, that we would be here?

But this is an update about Mom, remember? I love her with all my heart, and ache if I haven't seen her for a few days. And I imagine "Amazing Grace" will pretty much take my breath away for the rest of my life.

She turned 70 on February 22.

New Life

There have been events that have changed the direction of my life in the last couple of months. I've been  riding them out for awhile, before blogging about them.

1 day into my new job, back in February, I realized that Mom was in some pain. She'd probably been sick for a few days, but I'd missed the cues. If I questioned her about her suddenly grasping her abdomen, she'd merrily respond, "What?! I have no pain." How do I call the doctor and ask to get her in right away...because I'm not sure why?

Of course, if you let some things go, they worsen and it was suddenly terribly obvious that she needed to see her doctor. I cut out early on the 2nd day of my new job to take her to Convenient Care. Her illness, thank God, was treatable with antibiotics and painkillers, but they still took a few days to kick in.

I got up at the buttcrack of dawn to tend to Mom before starting Day 3 of my new job. I arrived to find a gargantuan mess. Her bed was wet and soiled, she was wet and soiled, the floors were wet and soiled. I set water running, and stepped out of my sweater and blouse, to keep from making a mess of my own clothes, and got Mom into the shower. I settled her in warm jammies with a cup of tea, then stripped beds, started laundry, washed floors, cleaned carpets. Then I raced out the door to try to get to work on time.

Of course, I realized that I'd left my phone at home, so I had to head in the opposite direction. As I approached the house, I realized that my clothes were still in Mom's living room. I found another outfit, grabbed my phone, and hit the road to my new office where I was going to arrive late and have to explain that I had to leave early today. Frazzled and stressed, I decided on the spot:

It's enough. I'm done. I've done a good job. I'm proud. But I'm done; I can't do it any more.

I called a case manager that mom had been assigned to ages ago, and, without reservation, told her "I need help. Today."

Within an hour, I had a call back, with news that there was an opening at Champaign County Nursing Home, 1 mile away from her home, 3 miles away from ours. In Garden View Court, a unit set up specifically for Alzheimer's patients. This was looking good.

I took care of Mom through the weekend, and the following Tuesday, I loaded her and her baby doll,  "Savannah," into the car. I told her we were going to go somewhere that there would be nurses to take care of her all while I'm at work, and she would have lots of girlfriends to talk to. She was excited.

 

Mom and Savannah

It was harder on me than it was for Mom. It's kind of like dropping your kid off for her first day of kindergarten...but not.  I didn't know how it was going to go, and you know...it's still a nursing home, with nursing home sights and nursing home smells, and nursing home nurses, and it's intimidating on your first day.

I was teary, and worried, and anxious, but instantly comforted when we arrived: The staff was waiting with open arms for Mom...and a stroller and a blanket for Savannah.

Mom got her settled, and took off like she'd lived there for years. Several staff members stopped to admire her baby.

Her bedroom overlooks a walking path (good for pushing strollers on), in the midst of a garden tended by Master Gardeners.

There's a small aviary, and this is her favorite bird:

"Oooo! Pink and purple!," she says.

8 weeks later. You can see by the pictures that she's pretty content in her new home. She sometimes asks to go home, but she imagines a home in which she is a child, and there are friends and family around her. When I remind her that she would have to sit by herself all day until I get off of work, then she agrees, that she likes it better where she is.

I focus now on paperwork and the exorbitant out-of-pocket costs for Alzheimer's care, while I adjust to living a life that doesn't rotate around tending to Mom. I have been amazed to discover how much of my time, energy, and money have gone into taking care of her, but I'll save that for a different post.

It is a new life for both of us.

I am damned proud. I am proud that I took care of my mother as long as I could and as good as I could. I made a few mistakes, and I know I was criticized along the way by a few friends and family that felt I should have put her in a nursing home earlier.

Ahh, but they weren't there, my armchair critics. I don't move blindly through my life. The decisions I made were the right ones, for us. I kept my mother happy, safe, and healthy for as long as I could, and took action when it was beyond me.

Yes, it's made for hectic schedule in my life, at times. So what?

I have, for years now, wondered at people that  "console" me with the words "it's as if you've already lost her." Really? Because things have changed, and she is not the same woman that she once was, I have lost her? She no longer IS? I bristle, darlings. Would you think that of your spouse, your best friend, your sister? Your child? 

Let me explain that her pronouncing "Jingle Bells" as "Bangle Jells" doesn't make her dead. I have not lost her. She is a beautiful little girl that wants to sing Bangle Jells and Jesus Loves Me. She likes babies and birdies and shrimp and bacon. Not a day goes by that she doesn't tell me I'm beautiful, thank me for all that I do for her, and tell me that she loves me so much. 

Sigh.

And she is safe and happy, and I rest easy, these days.

Life is good.


*Shout out to my new employers, Jennie & Paul Edwards, who never blinked an eye over my sporadic first weeks in their office, reiterating only "Mom comes first."  You guys just dropped right out of heaven!

Bleah.

I haven't been writing much, lately, here, there or anywhere. Truth is that taking care of Mom is burning me out a bit. Lately I feel like I am tired every minute of every day. I'm not sure if we're going through a temporary phase or if we're entering a new stage of Alzheimer's, but Mom has been particularly, ummm, quirky lately.

Where I have previously been able to anticipate her next move and prepare for it, she lately takes me off guard.

• I go to put lip balm on her lips, and she bits the end of the chapstick off.
• I let her smell a candle, and she licks it.
• She breaks into dance at the most inopportune moments--more often than not when we're surrounded by displays of glass.
• Her fixation with her hair and hairbrush has returned, she brushes her hair constantly, and calls me on the phone to tell me how much hair she's recovered from her hairbrush.
• I looked up this evening to find her combing her hair with her fork, while we sat eating in a restaurant.
• She wants to tell you that you are beautiful, or handsome. This sounds endearing, but strangers are very put off by it. I run constant interference, worrying that she'll some day approach the wrong person, and end up with her feelings hurt, or worse.
• She wants to constantly shove a blanket in my face while I'm working in her house. "Here! This will keep you warm." 
• She cannot find the toilet tissue or flushing handle in any bathroom besides her own, so needs assistance everywhere we go.
• I've mentioned before that the slightest discomfort brings forth a response of pure agony. I'm supposed to take her blood pressure every day, and each time she screams "Why is this happening to me?"
• She rarely puts the phone back on the hook, and if I do not call her intermittently throughout the day, I arrive to find her sobbing, telling me she thought that I no longer love her.

In addition to all of these little issues, her attention span is waning. When I direct her, for instance, to slide her foot into a shoe, she agrees to, and then walks away, shoeless. When I remind her she needs to put a coat on, she says "ok" and continue out the door as if I haven't spoken, only to turn around and announce that it's freezing outside. Herding her through a door, or to the correct car, or away from the mens room is a constant chore.

We have then, a giant Catch-22. She is lucid enough to not want to be sequestered. She wants to get out, go shopping, go do something. But taking her out is getting to be more than I can handle, alone. Getting and keeping her attention requires a certain amount of sternness. Holding the car door for her, and telling her to get in doesn't work. "Mom! Get in the car! We have to go now!" will get her attention. It also, often, hurts her feelings, and we come back to "I know I bother you."

I've written here before that I have gotten some in-home help with her. Daily help has been a Godsend to be sure, but her condition advances, and I seem to fall further behind. I have enlisted the help of medical counselors to start shopping for assisted living in Alzheimer's facilities after the beginning of the year.

I feel incredibly guilty. I feel like I should shirk off tired, and continue to do everything I can. I scold myself "It's not about you! You don't even have this disease! You have so much to be thankful for! Stop feeling sorry for yourself!" But I also feel like I'm exhausted to the point of  making myself sick. I'm too tired to do what i need to keep myself physically and mentally healthy. Meal planning? Exercise? When, 10 p.m.? I find myself answering every question addressed to me with some story about my mother. Things I do, I just do not do any more. I don't even know what things I do.

I have no tidy way to finish this post up, I'm too tired to think of anything clever. My mother, she is precious, and I do love her.

Alzheimer's sucks.

The end.

Illness and Chaos and Drink-Your-Water Awareness Week

(This blog was first posted at This Just In.)

The last couple of weeks have been busy, fun, hectic, and exhausting—Clint and I have both had the sore throat/cold thing that's been going around. No sympathy for us though, we admittedly ignored common remedies, trading in cold meds and bedrest for full-speed-ahead fun, camping one weekend, and heading to St. Louis for Oktoberfest the next.

Unfortch, this thing that's going around isn't giving up until you do, and I have never been terribly good at paying attention to my own symptoms. This contradicts my tendency to frequently announce "I think I'm getting sick." Since I rarely actually get sick, I worry, instead, that I'm a hypochondriac. I am then paranoid about being a hypochondriac, which brings me full circle back to ignoring my symptoms.

I digress. I spent last week coughing and hacking. Muscle aches began to set in, and I was complaining of a back ache by Tuesday. Late Wednesday I was visited by abdominal pain and fever, and vomiting began in the middle of the night. My God, I thought, this is the worst cold I've ever had.

I finally took a freakin' ride on the Clue Bus on Thursday, when—I'm sorry, I know this is entirely too much information, but it is what it is—when I began peeing blood. UTI. Never having had one before, I didn't recognize the symptoms, and just thought I felt lousy all over from the cold. If I hadn't felt so sick, I'd have felt silly. I came home with a bundle of Rx, went to bed, and called in sick on Friday morning. Recuperation was cardinal.

Around 11:00 Friday morning, Mom's caregiver called me, and told me that I needed to come right away. "You're mom's not acting right, and I've already called and ambulance."

We raced over to find that Mom had lost, or nearly lost consciousness. She was dazed and looking ghostly. Lisa's description of the events took me back a couple years ago when Mom ended up ER and was released with a diagnosis of vasovagal syncope, which means, "she fainted."

I'll cut to the chase and tell you that Mom is fine, but this time around the trip to the hospital was a lot tougher. Her blood pressure was the culprit, plummeting every time she went from a sitting position to standing. Although all tests looked good, they decided to admit her for the night, to keep her under observation.

I've mentioned before that Mom has a very low pain tolerance. Alzheimer's plays a huge part in this; she simply can't anticipate pain, doesn't understand it, and, if it lingers, doesn't remember what caused it in the first place. Every half-hour or so, it is sudden and brand new.

You can imagine, then, how much fun it was to have an IV needle stuck in the crook of her arm for 24 hours. "What IS this? Why is it here? I want it OUT!" She finds the blood pressure cuff agonizing, and sobs every time the machine turns on. I talked her through 2 shots in her stomach. Poor thing tried to grab the nurse's hand the first time, knocked the needle out, and had to get second stick in the gut.

I can't even imagine how terrifying it would have been for her to be there alone for 24 hours, so it was slumber party at the hospital night for us. Tim and Brandi stayed with Mom while Clint and I ran home, and I returned with my own meds and a pillow, to settle into the recliner next to Mom's bed.


The recliner from hell. There it is, look at it, someone needs to exorcise that thing.

SSsssss!

Anytime anyone sat in this chair, it reclined. If you wanted to recline, however, say, to get a little sleep, you had to physically hold the chair in the reclining position. I managed to get positioned just so a few times by locking my feet and stretching out to the top, and hoping my weight would the hold the chair open. Victory was short-lived; the second I relaxed into sleep, the chair would snap shut, sending my pillow flying and leaving me misaligned and flailing for balance.

Between the chair, the nurses stopping in every 45 minutes, and keeping a constant ear on Mom so that I could keep her from pulling out her IV, I think we were lucky to each have logged 60 minutes of sleep Friday night. It was a tough, tough night, and we were both more than relieved when we were given the all-clear along with the final diagnosis: Dehydration.

Dehydration!! Dehydration, the culprit! Though she's drinking water every day, and every one of us pushes it, apparently she's not glugging down enough of it. Dehydration, we learned, zaps you of strength, and blood pressure, apparently, especially when you stand up too fast.

We all know drinking lots of water is important, but I got a first hand picture, this weekend of what a lack of it will do—and also what rehydration will do. After being plumped up with a quart of IV juice, I was amazed at the change in Mom's demeanor.

A-MAZED, people. She was funny and energetic, and lucid. Well, lucid for Mom. She was downright jocular when she found out we got to leave. While I was helping her get dressed, I found 3 of those little EKG thingys still stuck to her. I was as careful as I could be, while she cringed and sucked in her breath, and yelled "ouch, ouch, ouch." When the last one was finally off, I was still unsnapping her hospital gown when I teased her, "Lord, Mom, you act like I'm killing you." She didn't miss a beat, but suddenly snapped "WELL, IT HURTS, GOOFY!"

Did she just call me Goofy? We paused for about 3 seconds before we both just fell apart laughing until we cried. Funnier yet, while we were busy giggling, she had lost track of the fact that I was undressing her. She was still laughing when she looked down and realized her hospital gown had fallen away, and she screamed "oh my God, I don't have any clothes on!" and she began howling with laughter all over again. I was by then bent over the hospital bed laughing and crossing my legs to keep from peeing my pants, which, under my  personal circumstances, meant my own meds were kicking in, and I was getting better too!

We were burning rubber out of the hospital lot by 2:30, and although we should have both gone home for naps, we were too busy still laughing, and so happy to be out of there that we went shoe shopping.

 
Mom, rehydrated, is something to behold; she is energetic and happy, and way more on top of her game. She's still Mom, and she still has Alzheimer's, but she's more confident and exercises a tad more logic. For her, these attributes are monumental, and my own eyes have been opened:

Water, water everywhere, if its that good for her, I'll have a glass too.

I will drink my water and count my blessings. We were there for a visit, for one night. It sucked, but I sat listening to nurses giving morning reports of other patients that had been there for weeks, with still no end in sight. I can't imagine, and I thank God that sleeping in a hospital is foreign to us. It was a 24-hour annoyance, with a merry, "let's go shopping" finale.

We are, I was reminded this weekend, incredibly blessed.

My turn to forget...

There are hard days, and there are hard days, we say.

It's been a hard week.

Last Saturday I picked Mom up early. We had lunch with my brother in law, Tim then came back to my house to hang out for the afternoon. When I'm working around the house on the weekends, I like to have her here, for a little socialization on both our parts, even if she decides to go take a nap. It gets her out of the house, we spend real, normal boring family time together.

We had a mundane interruption to the day, when I had to run to Office Depot for toner. I was locking up the house and herding her down the sidewalk when she asked me "do I have Alzheimer's?" I distractedly answered, "Yep."


When I say I was completely inconsiderate, I mean I was just that. I didn't put one iota of thought into my response. She knows she has Alzheimer's, so I simply figured there was more to the conversation. She might then declare "but I can still do things!" It would be a typical conversation

About 1/2 hour later, we were on our way home, and she suddenly burst into tears "why...why...would you love me? Why would you like me?" I was stunned with the outburst, but began giving her a list of reasons I love her, and asked her where this was coming from.



She sobbed harder. "With what I have. I'm not a good mother."
It wasn't until then that it hit me: She hadn't known she had Alzheimer's. She knew at one time, but she'd forgotten, and I had completely pulled the rug out from under her with my nonchalant answer to her question.

And for the last week, I have not been able to undo this; she just found out she has a disease, and she cannot be cheered. She a failure. She can't drive. She is supposed to be in a role of helping me, and she—she can't do anything!!!!

There is some light, today, after a week of convincing her that she is beautiful and worthwhile. "You know," she says, "I can do a lot of stuff." I joined right in on all of the stuff she does, "You read the paper every day, and you always know the weather. You take care of Buddy, and take care of yourself all day long until I get here"

"I can't take a shower," she reminds me.

"Yes you can! The faucets turn backwards, and it's hard to get the warm water right, that stupid thing is half-broken!" I tell her. "Don't I just get the water right and you wash yourself?" It's kind of true, and she's gleeful. And she can answer the door, and she can call me on the phone, and...

...and it was a tough, tough week with Alzheimer's. There is simply a point of no consolation, where you do and say what you can, and you have to let go and let God, and this will work itself out, and she'll come to terms with her situation.

Someday, she will forget again. And then...I will either be ready for it, or I'll have forgotten also, that she doesn't know.

Tomorrow is always a new day.

Gasp!

One thing that I appreciate about Mom's current state of mind is that she still gets the joke. Teased lovingly, she will understand and laugh right along. This afternoon when we were near the mall, sirens in the background set her to speculating. "Someone probably fainted at Bed Bath and Beyond," I teased her. (Long story short, if you don't want to read all of that: She had a cramp, held her breath, fainted, and took a ride in an ambulance.) She recognized that I was teasing her immediately, and said "I don't ever want to do THAT again!"

And there are times that *she* gets *me.* And she damned well knows it, which makes it all the funnier.

We were sitting at five-points yesterday (for you townies), when someone, somewhere, honked their horn. "Shut up" I said. She chimed in "Yeah!" "Yeah, Mom! Tell them `Shut the hell up.' " 

"I would never say that!" she chided me. I assured her: "I know you wouldn't."

"No!" she said, "but I would say `YOU BASTARD!!' "

It was then that I almost fell right out of my car door, which is exactly what she'd been anticipating. We both screamed with laughter, me still out of total shock, and she for having gotten one over on me.

My mother, she does not swear. She rarely gets angry, and when she does it's almost humorous for it's lack of frequency. Any family and friends that know her can now testify that they, also, upon reading this just fell out of their computer chairs.

Hand on the Bible, yes she did.

She said the b-word.

She got me good.

Going bananas?

Mom has a barky little Pekinese named Buddy that keeps her constant company. She adores him, but occasionally gets aggravated when he barks at strangers. "Next time I'll get a cat," she threatens him.

I was washing her hair today, and when done, had her bend over so that I could get her hair wrapped up in a towel. She was yakking away about Buddy's barking, and said, "you know what I want after Buddy?"

A cat, yes, I knew it was going to be a cat, but I bit anyway, and asked her what she wanted.

Dead serious, from underneath her towel, she yelled "A monkey."

Taken off guard, I guffawed right in her face.

She defended herself: "Monkeys have to eat too. Plus, they don't bark."

Hm. I think her new book may have just backfired on me. If you have a box full of Monkeys free to a good home...please don't call us.

Teeth Real Fast

Oral hygiene has been an interesting endeavour as Mom's Alzheimer's progresses. Brushing her teeth is do-able, but finagling toothpaste confuses her. Our best solution this far is for me to put the paste on the brush for her every day, and hand her one of these:

The electric toothbrush has been a Godsend; it does a lot of the work, and she gets a kick out of using it. It's also easier for me to help her with it when she decides to skip the back.

Friday evening I got her all gussied up for dinner. After shower and hair, I told her "Let's brush your teeth real fast and then we can go." While I was squeezing the toothpaste out, I heard quite a clattering in my right ear, and turned to find Mom standing about 1 inch away, doing what can only be portrayed by this 3-second video:

I gave her a look of utter confusion and some amusement, and she explained:

"You said `teeth real fast!' "

And then she collapsed into giggles. Once again, I followed suit; she can be kind of clever sometimes.

Bookworm Mama

My mother was always an avid reader and library patron. She still enjoys reading, although I'm not always sure what she comprehends. She reads aloud now, working over words and sounding them out when necessary.

She enjoys reading the newspaper, which is great—any cerebral exercise is good.  She does not, however, remove the newspaper from the plastic bag it's delivered in, in inclement weather. She simply reads through the plastic, and hones in on words that disturb her: Burglary! Murder! Articles about children put her in a tailspin. I've considered starting a Good News Newspaper for Alzheimer's patients.

Anyhoo, Mom's been repeatedly questioning me lately, "Where do you get books?" When I tell her they're available at the bookstore, she exclaims "Oh!" as if she'd never heard of such a thing. The topic has come up often enough that I informed her, yesterday, that we were going to the bookstore. "Yipppeeeeee!" she said.

When we arrived at Barnes & Noble, she informed me that she likes Murder She Wrote. Murder mysteries. Hm. Murder. Based on her tendency to get upset at what she reads, sometimes, I steered her away from murder books. And books with bad words.

 "Ooooo, that's wrong!" she told me, calling me back to show me this one she'd spotted.

 

"Bitch!" she exclaimed, a bit too loudly. Tsk, tsk, I agreed, that is a bad word, let's keep looking.

We browsed through technical books, and then I found a section of books suitable for her. She decided to keep looking, and we browsed through other aisles. After awhile, I nonchalantly strolled back through the Mama-suitable books. "Oh, look!" she said, exclaiming over a book she'd rejected before. I gushed also: "Oh, how cute, would you like to buy this one?"

Yes, yes she would like to buy this one!

 

Off we went, then, with her bag o' goodies.

Ahhhh. There's nothing like settling in under a warm afghan with a cup of tea and a good book.

Tinker, Tailor, Soldier, Spy...

...or rather, "Banker, Groomer, Gardener, Chef," if you find yourself in the role of caretaker for an Alzheimer's patient. Throw in grocer, maid, dental assistant, handyman, manicurist, chauffer, recordkeeper, tax accountant, veterinarian, receptionist, dishwasher, and laundress.

Oh, and let us not forget: Nurse.

I have always had a bit of queasy nature; nursing is one job that I could never pursue because of it. Puke makes me puke. Snot, spit, pus, pee, poo...ugh, take my lunch away, I can't eat anymore. And blood! Blood and bones should always remain inside one's body. I don't want to see, read about, hear about, or even imagine either of those two things outside of anybody's body. True story: I once fainted over movie blood.

It is to the great amusement of my family, then, that I always seem to be the one present when Mom has any issues with any of these things. Could it be my niece, who has a degree in forensic science, and would love to play in pus? Noooooo, the big boil on Mom's back had to explode while I was there, leaving me gagging and cleaning up...ugh, God, I can't write any more.

That nasty infection turned out to be a very contagious MRSA, and washing my hands in boiling water for 45 minutes didn't keep me from contracting it. It took me 4 months and lots and lots of medicine to get rid of. See, a nurse would have recognized those possibilities, and wouldn't have touched that thing with a 10-foot pole, or at least without rubber gloves.

There has been a giant box of rubber gloves on Mom's counter ever since. I wear them to clean the house, and if she has so much as an inflamed freckle, I'll put them on before poking it to see if it hurts. Rubber gloves are my friend.

Enter then, our latest dilemma:

Hemorrhoids
No graphic appears here.
Do yourself a favor, and do NOT do
a Google Image search for hemorrhoids.
Trust me: There are no "cute" ones.

Super. Wonderful. Couldn't be happier.

Believe you me, I went the route of handing her a Preparation H wipe before resorting to anything that required me and a glove. Alas, certain discomforts weren't being alleviated with a witch-hazel soaked tissue, so I was forced to buy a tube of Preparation H.

Me and  Mom

[Censored-censored-censored, I'll leave the details up to your imagination] and then I snapped off my gloves, and said "God, Mom, did you ever imagine I'd be sticking my finger up your butt?"

She said "Well, at least I can still put deodorant on by myself."

Oh, yeah, thank God for that; I sure don't look forward to the day I have to point an aerosol can at your armpits and press a button.

Sighhhh. The thing is that we just do what we have to do, and usually the idea of something is worse than the actual something. When you get right down to it, it's just a butt, big damned deal. I know that someday I'll look back and wish that a little butt cream is all I had to deal with, with my mother. As bad as a day may seem, I know that someday I'll miss that day.

And it's true: At least she can still put on her own deodorant.

Mom's book of baby names...

Phone call from Mom:

Mom: Hi, I was just thinking something.

Me: What were you thinking?

Mom: If a person had a baby, could they name it Harley?

Me: Sure, they can name their baby anything they want.

Mom: Oh, ok. Well, that's all I wanted.

Me: Ok. Love you. See you when I get off work.

Mom:I love you too. Bye.

Tears in the House

Mom called me one morning a few weeks ago, and it was obvious she was crying. I waited for her to find words she couldn't. "I am crying" simply would not come to her, so she said "there are tears. Yes. There are tears in this house."

We are very close to her sister, Karla, but unfortunately we're separated by 2000 miles; she lives in San Diego, and though we talk often, we don't see each other as much as we'd like. Mom misses her.

Aunt Karla, teaching Mom to play hopscotch last fall.

They speak on the phone almost every day, but she wants to see her, to hang out with her, to be with her. I found out later in the day that Mom had also called Aunt Karla with the same message about tears. We both tried to comfort her, reminding her that at least there are telephones, and that Aunt Karla loves her very much and that we may get to see her when the weather gets warmer.

She cheered up after a day or two of comforting, some getting her out of the house, and  lots of counting our blessings. We do a lot of that: counting our blessings, as we deal with this ugly disease.

But sometimes, it just gets to us, and we have tears in our houses.

Make Me Funny

I fixed Mom's plate tonight: leftover shrimp & angel hair, from her favorite chinese place, First Wok. While she munched away, I set a bowl of fruit next to her plate, and then a little candy dessert: "Here you go, Mom, some chocolate covered pretzels for a snack, when you're done."

"Chocolate covered puppets?!!"

"Yes, Mom, I'm giving you a chocolate-covered puppet."

She knew immediately that was silly, and started laughing. So happy to see me laughing with her, she said:

"I like to make you funny."

"You make me funny, alright."

It's true. Every day she makes me funny.

Where Are My Square Pants?

Mom often requests cheeseburgers for lunch, so I recently took her to Burger King. I ordered a cheeseburger happy meal for her, and she pulled this toy out of the box:

"Look, Mom! You got Spongebob Squarepants!" I told her.

Her reply?

"Oh, that's nice. I'll have to put those on when I get home."

Weathering the Weather with Mama Loca

I hate to keep Mom cooped up in these subzero temperatures, but she does not fare well in cold weather. 40-degree weather brings forth exaggerated shivering and exclamations about how she's freeeeeeezing. She hunches her back and hunkers down like she's battling 100 mph winds, in a 30-foot scoot from the car to the front door of El Toro.

It's been 50-degrees colder than 40-degree weather, and I've been alleviating her cabin fever with an extra hour of my company—woot! I warn her ahead of time: "we're not going anywhere because it's very very cold." She responds "Well, it's nice and warm over here; the sun's out!" "Sun" automatically translates to "warm" to Mom, as does a cloud—a lone cloud in the midst of a blue sky prompts her to predict rain.

After a week, though, I gave in and decided to get Mom out of the house for lunch, meeting up with the familia at our favorite restaurant.

Taking Mom for lunch in inclement weather means arriving to her house at least 40 minutes early. Slippers have to be replaced with boots. She will sit with her feet solidly placed on the floor, and when you ask her to "lift your foot," lean back, or you're likely to get it right in the teeth.

Once her boots are on, she'll walk around complaining about her toe, her toe hurts, this boot is killing her toe. Ask her, then, "doesn't your toe hurt all the time?"* and she'll say "yes it does, and this boot feels pretty good, actually."

Time for the coat. The first arm slides in easily, but the second requires a bit of tackling. she throws her hand all around, pushing it up into the sky, and down. When you hit the brakes, and say "give me your arm, Mom," she put her hand right in your face. "Here!"

Next up: Mittens! Jazz-hands are offered, fingers extended so that no mitten will slide on. Asking her to close her fingers results in making a fist, and still no mitten can be placed. After the first mitten goes on, she pretends it's a puppet, and says "hello, how are you?" and laughs her head off, while you're tackling #2.

Topping her off: The hat! Tug it down over her head, in the interim shoving her hair into her face, which she hates, and pushing her glasses down on her nose, and she can't see.

I adjusted hairs and glasses on Sunday, and asked her, "There, can you see now?"

"You sound like a cat. Now. Nowwwww. Me-oooowwww."

Again she thinks she's hilarious, which she is. She's also, by now, ready to go.

And we trundle out for lunch, where she'll order a salad with grilled french... french...fre.... shrimp.



*We don't ignore the toe problem all of the time; The toe is under doctor's care. The toe is getting better.

Speaking Mom-glish

Communicating with my Mother, these days, although sometimes frustrating, is more often than not fascinating, and sometimes downright hilarious.

When the wrong word comes out of her mouth, she usually knows immediately that she's mis-fired. I am patient with her, and she is comfortable talking to me, so without embarrassment, she'll try again. I give her time and try to help her along without obviously finishing her sentences for her, when I can. 90 percent of the time she can find an alternate word or description. If she wants to go to "the store with the bullet," you take her to Target.


It's heartbreaking, sometimes, to see other's response to Mom's substitutions. I don't know how many times I'll say it here, but Alzheimer's really does freak people out, and I'm in constant wonder at what others must have to deal with, with their own, or their loved ones' physical and mental disabilities. Mom will say something sometimes, substituting one word for another word lost. I wrote in the last post how she used the word "flowers" when "leaves" was hiding for the day. While some people roll their eyes, ridicule, and avoid conversation with a crazy old bat, I find her absolutely, honorably courageous and brilliant for the attempt—and for usually finding a pretty ok substitute. Don't sweat the small stuff people, does it matter if it's a leaf or a flower? The point was that it's beautiful.

There are often some comical side effects to her word choices. Last summer Mom read in the paper about a murder in Champaign, and an "attempted murder" between a jealous couple, in her neighborhood. Agitated, she was, over all of these murders, and I explained them away to her, trying to lighten up the subject. There was no mass murderer in her neighborhood, it was "a mere love triangle" in which a jilted lover tried to run over his ex. A cheerful murder.

Mom got right on the horn with her cousin Mary, and told her all about the crazy events in her neighborhood. The murder! The attempted murder! Terrible, just terrible!

Only Mom couldn't find the word for "neighborhood." So, she substituted.

It was, I am sure, only minutes after ending their  phone call that Mary called me in a bit of a panic. Trying to remain calm, she said, "Uh, hey....your Mom just told me someone was murdered in her house...is that right?"

Word Substitution = FAIL

Well, thank you very much for calling, but that information is wrong (Dead wrong, hahaha)....I hoped. Mom's murder report had come in on the ONE day in an entire year that I had arranged for Mom's dinner ahead of time, so that I could tend to other obligations. I got off the phone with Mary and thought, "Great, now watch. I'll go to Mom's house after work  tonight, and there will be a dead guy in the living room."

There wasn't, and there's no point in trekking back to Mom and telling her that she misinformed Mary. I did make it a point to clarify, once again, that a crazed murderer wasn't running the streets, hacking up all of the neighbors.

So there we are. I keep a notebook, jotting down the more humorous Mom-isms, and will start incorporating them into my posts.

Learning another language will be good for you.