How many more turns will there be on this emotional elder-health roller coaster ride?  Is it the slow creep up the last big hill, before the sudden drop? Perhaps it is the gentle slowing at the end of the ride, with one last, "Watch your step as you exit."  How precarious will that step be?  For her? For us?

When mom turned 87 on August 27, it was in a wheel chair, not her usual Merry Walker that everyone loved to see her use throughout the nursing home. Mom was officially diagnosed with Congestive Heart Failure (CHF) in mid August.

The nurses and Doc are saying, "She's slowing down." 

For once, my gut instinct is that the nurses and Doc may finally be right.

While many people have fluid very visibly build up in ankles or other extremities (like Mom’s mother did), Mom hasn’t had that. Her fluid is build up … in her lungs.  They started her on a diuretic, but it doesn’t seem to be helping as much as we'd like.

Mom exerts extra energy to stand up, lay down … her breathing becomes very audible. She sounds like she is gasping for air.

My understanding is that many folks live for years with Congestive Heart Failure. (Such a scary term!)  For Mom, it seems she may have the worst kind, and it possibly may be … among the last straws straining the camel’s back. But is it really?

When they said last year that Mom was experiencing a steady progression of dementia, I argued that it seemed just as likely that her Dilantin prescription for seizures was at too high a dose. I was right. "They" were wrong, again.

See Her While You Can

In August, I called my brothers and reminded them what I’ve said a number of times: When I see Mom, each time I see her I know there is a possibility it could be the last time I see her, either as she is, or alive.  There is always a chance she could have another stroke. Doc expected her to live only six months, 2.5 years ago.  Now, CHF has been added to the mix.

My Kenosha brother booked a vacation for September 6 through 13, to visit Mom in Puget Sound. .

The timing was perfect.

Mom started wheezing, gasping for breath when she exerted herself, such as standing up. Then it progressed to when she walked down the hall. Then to when she drank anything.  There is only so much “real estate,” per se, in the chest cavity. The Lasix diuretic seemed to reduce the fluid build up in her lungs for a few days, and then she got worst. From wheezing just when she was laid down, then calming down … to a more constant wheezing while lying down.

Go With the Gut: Change What You Can

I see fear in Mom’s eyes for the first time since the hospital stay following The Big Stroke of 2005.

Mom quit genuinely smiling. 

Doc visited her Saturday morning, at the request of the Friday-night nurse, but didn’t make any changes to her care plan. (Since Mom is typically worst at night, I wonder if he saw her at one of her best times.)

That Saturday evening (September 6), several nights ago, it seemed like she wouldn't last a week. During the days, I wonder if it could be weeks or months.

There really was that big a difference between her nights and days.

Should there be that big a difference between nights and days?  At 3 a.m. on Monday, I woke and said out loud, "No, there shouldn't be. You know better. Go with your gut!"  After a few more hours of fitful sleep, I threw the covers off and went to talk to the primary in-charge nurse on Monday morning.

Except for the Saturday morning Doc visit, it would have been a “classic” healthcare weekend with most of the primary healthcare professionals being off. (Note to self: Remember to never get ill or feel worst on a weekend. Make sure it happens on a week day, during normal working hours.) During the weekend, I felt like a pinball, bouncing from one nurse to the other with my concerns, and correcting one temporary agency nursing assistant after another on Mom’s routine care.

Hadn’t felt this level of frustration for awhile.

So, Monday morning, when the regular, primary staff was back on duty, I talked. And talked. To the nurse in charge. To the social worker.

“All weekend, I kept saying the head of Mom’s bed should be raised higher than 30%. When she is sitting up, she seems better. When she lies down, she is wheezing like she feels like she is drowning, and there is a look of fear in her eyes.”  

I was told by each weekend nurse that the head of her bed shouldn’t be raised higher.

Perhaps I didn’t understand their answers. Blood could pool … she could get bed sores? I must have gotten their reasoning wrong. She couldn’t breath clearly now, because she could get bed sores later?  I must have gotten that wrong.

I raised the bed, anyway.

On Monday, the charge nurse agreed with me.  

Duh.

“At what point can Mom be put on oxygen?”  

When her blood oxygen level drops to or below 88%.

“Stop playing the numbers game, and pay close attention to how Mom is feeling and reacting. It is obvious to everyone that she is struggling at night.  Help make her feel more comfortable! When my brother had his heart attack, he said that oxygen immediately helped him….Could it help Mom?”

“Can we try to figure out why Mom is so anxious? For two nights, Mom has been counting out loud: From one to eight. From one to eight. From one to eight. At 7 p.m.  At 11 p.m. From one to eight. Obviously, when she is counting, she isn’t sleeping.”

No one had noted that in the charts, so the main charge nurse wouldn’t have known that, if I hadn’t told her on Monday morning.

I bulldoze ahead, “If Mom is weaker, perhaps the dosages of medications she’s been on are too high a dose. Perhaps since her blood oxygen level has dropped from 96 to 90, her brain is oxygen deprived enough to cause the anxiousness?  Perhaps the fear she feels from the pressure on her lungs makes her use the counting mantra to feel better.”

Monday evening, my Kenosha brother called and said he got lost going to our sister’s house, and ended up back at Mom's nursing home. Mom was in the hallway, in her wheel chair, sincerely smiling.  She was wheeling herself around in the chair.

They had put her on some oxygen in the afternoon, and she was feeling energetic and seemed positive.

Duh.

I visited Mom a few hours later. She was indeed smiling more than she had all week.  We sang, and sang more when she didn’t want us to stop. Then a neighbor’s daughter dropped by and gave a special request for the Sound of Music, so we sang some more. Then, I read with her. She finally said she wanted to go to bed.

Her head was raised much higher than it had been during the weekend.  She fell asleep immediately.  No counting.

A different nurse, a new nurse, came in and told me they may try upping her dose of diuretic, to see if that helps her, too.  

What took them so long?

The Roller Coaster Ride Continues

It is now Thursday. Mom has since lost the sparkle in her eyes, again. She had tears in her eyes last night. (I can count on one hand, how many times I’ve seen her tears.) While she is pleased her son is still here for one more day, she is feeling more caged than ever, with the wheel chair, the extra weight gain from fluid and now the oxygen tank.

Mom has gone from walking in the Merry Walker around the entire building whenever she wished, to only walking with the rehab team. She had been walking up to 75 feet with them holding her up. Now she struggles to do 50 feet, if that much.  Yesterday she couldn’t walk at all. 

On her wall are patches showing she hiked 6,700 miles with the hiking club.

Now, she struggles with each and every transfer, from bed to standing, standing to sitting, requiring two, not one, nursing assistants for each transfer.

When I asked Mom how she was doing today, she, who talks so few words because of the ever-lasting aphasia from her strokes, simply shook her head “No,” and clearly, succinctly stated, “Quality.”

No quality.

I bit back my tears.

How many turns will there be in the emotional health roller coaster?  I really don’t want to know.

This is Mom’s ride. Whatever the speed, I pray for as smooth a ride as possible for her. She is so precious. I’ll go where ever she takes me, for however long, while paying close attention to my own gut instinct to determine when to push the system really hard, and when to push softly.  

Mom is slowing down. 

I asked the social worker about hospice. What is it? Could Mom be put on it?  She said the doctor would have to give the approval.

“So get it! He’s the one saying she is slowing down.”

So now we’ll learn about hospice.

Is it really time?

My heart is breaking.