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::