State of Denial

It's been a while. I'd like to say I have so many thoughts and feelings about dealing with my parents, but honestly, I don't. I feel sort of numb, and I think that's partially because I don't want to think about it. I would rather hide my head in the sand than think about what's happening.

In the meantime, I still go every day. It's not for very long. Sometimes Dad falls asleep. Sometimes he's taken to the dining room for meals. Sometimes he's being changed and dressed. Sometimes, I just have to leave.

Leaving is hard. Mom and I practice NOT saying: "We have to go." For some reason, Dad takes that as a signal that he's leaving and he starts pushing his blankets aside to join us. That part is heartbreaking. I have to, somehow, placate him and explain that he needs to stay and that we'll be back tomorrow.

If I'm REALLY honest, I'd tell you that I try not to think about Dad and what he's doing when we're not there. I just can't go there. It's just too heartbreaking. Because I actually know that he just sits and stares. Based on the few comments that he makes to us, I'm guessing that he makes lists in his head about what he needs to do. The other day he said he had been to the hardware store, which is something he often did.

This week, we were offered the opportunity to move Dad to the Memory Care unit. I asked what was different about it and I was told that it was a smaller unit, so there would be more one-on-one care. On my walk-through, I noticed that there are no TVs in the rooms and residents all seemed to be gathered in the dining area for an activity. After talking it over with Mom, we agreed that Dad would HATE it there. Although his dementia has ramped up significantly, if he has any awareness of where he is, that is NOT where he'd want to be. He likes his solitude and I think he's happier sitting alone, staring, than he is in a group of wheelchair-bound patients, attending music therapy. But giving him his solitude means the possibility of him trying to get up and "take a walk" which, one day, might result in a serious injury. Thus far, it's a risk we're willing to take.

What scares me, looking forward, is that Dad might linger like this for a LONG time. Although weak and confused, his health is relatively stable. My guilt surrounding this possibility is almost overwhelming, so I choose not to confront it.

Meanwhile, we carry on.

Nightmares and Confessions

I think of new ideas for this blog all the time. Honestly, the inspiration is endless. When you care for an elder, you constantly run into issues that are challenging, frustrating and emotional - the holy trinity of inspiration for a blogger.

Today, though, something new occurred to me. You see, I've always described Dad's stay in a nursing home as HIS "worst nightmare." Today, I realized, it's also mine.

When I was a pre-teen, I somehow was given the opportunity to volunteer at a nursing home. At first, I was all gung-ho, thinking how sweet it would be to hang out with old people and do good deeds. (I was raised Catholic and doing good deeds was the best way to get into heaven. Bonus!) It was great until the first time I walked in the door. I instantly hated it. Of course, I couldn't run away, but it was awful. I probably went maybe three times and then worked very hard to never go again. The smell, the fluorescent lights, the old people, the overall depressing atmosphere was simply too much. I couldn't take it. Somehow, I feel like God was taking notes and said, at that point, "OK, you get a pass, but eventually, you'll have to go back."

My new routine is to visit Dad virtually every day. This was decided (by me) when Dad became aggressive and combative toward my Mom and sister (including dropping F-bombs.) I told Mom she shouldn't go alone, because Dad seems to think he can order her around. That's too upsetting for her. So I needed to step up and told her that I'd be there every day unless I absolutely couldn't.

Here's where I get honest: I hate it. I hate going. I dread going. I can't wait till each visit is over. It's for the same reasons that I had when I was a pre-teen, but somehow my maturity forces me to shut up and deal, as best as I can. It's not great.

The other day, Mom said something very true and very depressing. We were talking about not putting ourselves through guilt trips if we couldn't stay long when we visited. She said: "I know this is terrible to say, but your Dad might last a long, long time...." She didn't have to finish the sentence. Part of me "stepping up to the plate" and visiting every day was based on the premise that he might not be long for this world. The idea that he could linger for months, maybe years, felt daunting - so daunting that I simply couldn't think about it. I'm not sure I can do this for months or years. But I will, if necessary.

People sometimes tell me I'm a really good daughter. If you've been reading this blog, you know that's not really true. My intentions are suspect and perhaps more wrapped in self-interest than I care to admit. I continue to blog and be honest because it helps me vent and if there is one person out there who is struggling with this same journey, maybe this will make them feel better. Maybe I'm a better blogger than a daughter. Nah, probably not.

In any case, Mom and I will keep fighting the good fight, even if the fight is against our desire to never step foot in that nursing home again. Because honestly, if I could walk away, I would. A shameful confession, if there ever was one.

Every Day is a Bonus

The other day, my husband and I arrived too early at church. Long story, but 10:00 am mass didn't start till 10:30 am. So, we had some time. A few rows in front of us sat an elderly man. He was wearing a Polo shirt and on the back of it, right under the collar, it said: "Every day is a bonus." I recognized this as the motto of the Honor Flights which take war veterans to Washington DC to visit their memorials.

I thought of this motto and how it related to caring for my parents. Most of the time, if I were honest, my motto would be "Every day is a challenge." I tend to approach this journey in that way. It's about visiting Mom and Dad, getting Mom to appointments, hoping Dad is having a good day, trying to go about my regular day while shoe-horning elder care in.

But that motto made me stop and think. I'm very aware that our time with Mom and Dad is short. And like most people, I tend to feel like my family and I are immortal. If we're not facing a health crisis, I guess I'm arrogant enough to feel like we'll be around forever.

I'd like to say thinking about this motto has made me a better person. That's doubtful. I'm still whiny, irritable and probably too abrupt with my parents and my husband. But from time to time, I try to pause and think about what that means.

Every day IS a bonus, regardless of what we've been through. Most of us haven't faced war or life-threatening illnesses or personal tragedies. But as Katie Couric recently said: "We're all terminal." With that in mind, I need to go and adjust my attitude.

The Grim Uglies - View from the Back of the Tapestry

I haven't written in a while. Not because nothing is happening. Something is ALWAYS happening with Mom and Dad...or more specifically, Dad. He's incredibly unstable. It's a daily game of waiting for the other shoe to drop.

A few weeks ago, Dad was back in the hospital. He has orthostatic hypotension, which basically means when he gets up (or, I should really say, when the aides get him up), his blood pressure plummets. Often, this results in an "unresponsive episode." He doesn't fully pass out, but he's completely not there. Eyes open, little or no response. So creepy to witness. Well, this happened and it took them 30 minutes to get him to snap out of it. They sent him to the hospital where two things were determined: He was dehydrated and depressed. He was also losing weight...fast. He's down 30 pounds this summer.

After two days, he was released after getting lots of fluids, intravenously, and an anti-depressant prescription. (The nurse practitioner at the nursing home had "denied" an previously prescribed anti-depressant because of the orthostatic hypotension, but Dad's former primary doc stepped in and said that the depression was obviously a key factor in his decline.)

So now, he's back at the nursing home. He's quasi-stable, but I know that can change in a minute's notice. We were able to get out of town for 5 days last week and, thankfully, I didn't receive any calls. Now Dad

But I have to tell you, when I got home, I was down. Getting old isn't for sissies and taking care of the old isn't for babies. It's dark and dirty. I really didn't feel like getting back into it. I didn't want to walk into that place that often smells like pee. I didn't want to sit next to my Dad and have him say nothing, forcing me to fill the silence with idle chatter. (I LOATHE small talk.) I just didn't feel like taking care of anybody but me and my husband. But, that's no longer my choice. And here is where I tell you that I wish I could quit. I wish I could pass the baton and let somebody else deal with this. But I can't.

There's a son that is at the nursing home EVERY day with his father. The father appears to be post-stroke or something severely disabling. The son doesn't look great himself. He's probably my age but has a terrible hump in his back. Regardless, he's there, every day, I'm guessing all day. Perhaps he doesn't work because of the hump. But he humbles me, because I can tell that he's willing to get in there and get dirty and deal with the minutiae. He changes his dad and feeds him. I've gone as far as feeding, slightly, and shaving. I haven't done the changing, but not because I'm unwilling. It really doesn't gross me out. But I feel like it's a respect thing. I don't think "old Dad" would want me changing new Dad. It would be embarrassing for him. So I've drawn a line there. But across the hall, Don Ho (no, seriously, that's the son's name) is doing it all. Putting me, a little bit, to shame.

We're getting to the grim uglies. I never know what state Dad will be in when we get there. Shaven or unshaven. Changed or unchanged. In bed or in a wheelchair. Most days, I want to run. I don't want to be there. I don't want to sit and listen to his roommate's phlegmy snoring while digging deep in my middle-age brain to figure out what to talk about. It's hard. I will win zero humanitarian awards for what I do because I don't do it with the purest heart. I'm just being honest.

I'm looking into moving Dad to a, hopefully, better nursing home where his call light might be answered in less than 25 minutes and his room would be cleaner and he'd be shaved regularly and administration would stop making promises and apologies and do their damn jobs. I'm kind of pissed at life right now.

Last week, our niece got married. It was a beautiful event celebrating a wonderful couple. But I have to tell you that during the ceremony, when they talked about "for better or for worse, in sickness and in health," part of me wanted to shout: LOOK OUT FOR THE SICKNESS AND THE WORSE. But that's my juvenile, selfish perspective. I don't want my niece or her husband to ever have to deal with some of the things that have come my way. Nobody should have to deal with children with developmental disabilities or parents with no money and poor health. But some of us do and we get through. I'm not dying. I'm not even crying. I'm whining, but you expected that, right? Like I said, no gold stars for this self-absorbed girl.

When our son was born, severely disabled, my husband and I spoke to our parish priest. We were young and very confused and expected this "man of the cloth" to help make sense out of this tragedy. (I would NEVER do that today.) In any case, he told us that sometimes life is like a tapestry. The front of it, what we usually see, is very pretty and makes sense. But sometimes, we're stuck looking at the back of the tapestry which is confusing, unattractive and with lots of loose ends. It was the perfect thing to tell us. I'm reaching back for that metaphor right now.

Grand Love

Today, I brought my kids to visit Mom and Dad. To be perfectly honest, I forced this visit on them because it could be the last time that they see Dad. They didn't fight it at all. They are matured to the point of realizing that their grandparents are aging and you never know what might happen.

It was important to me that this visit be different than my regular visits. Dad now has a roommate, Bruno, who Dad is convinced is Serbian and doesn't really speak English. (I have no idea how he knows this since he and Bruno sit next to each other in their wheelchairs and don't speak. They are an odd couple, but somehow it works.) Nevertheless, our visits are usually Mom sitting in the chair and me sitting on Dad's bed and Dad semi-reclined in bed. With two extra people, and not much privacy, well, I didn't want that to be my kids' last memory of their grandpa.

So I called ahead and requested that Dad be up and in his wheelchair at a designated time. We brought him a cheeseburger and a chocolate shake. He didn't eat much of the burger but did finish the shake. All in all, it was a nice visit - for Dad, who was his typically quiet self and especially for Mom who just brightens up when her grandkids are around.

I realized that I sort of put blinders on when I visit Dad. I try to block out the unpleasant parts of the nursing home - the smells and sometimes the sights. As much as this is Dad's worst nightmare, it's also a little bit of mine. I block it out and focus as much as possible on Dad, who has "softened" considerably in his demeanor. His social needs are few, but I feel compelled and, admittedly, obligated to make sure that I'm there regularly. It's my responsibility.

Today, I noticed that Dad is starting to become more disoriented than before. He asked about his long-deceased older brother and whether he would be visiting. He also confused my daughter and me and spoke to her as if she had never been there. He looked at her and said: "This is our home away from home." Yesterday, I commented on some of the mild chaos around him and he said: "It would be nice if they could move me to another room, down the hall, with your mother." It seems prudent not to set him straight on the fact that that will never happen. I don't relish another conversation that crushes his spirit.

So, somehow, I feel like we did a little good today. The kids saw their grandpa and have logged another experience in the circle of life. I've sheltered them so much prior to this. It's time they understood real life.

A New Normal - A Loss of Independence

A little less than a week ago, we told Dad that he was not leaving the nursing home. Basically, the administrators at the "campus" where Mom and Dad live told us that he requires the highest level of care possible. On the list of awful things you have to tell somebody, this ranks pretty darn high.  

How did Dad take the news? Hard to say. He was very quiet. I brought hubby along with me, knowing that Dad respects him tremendously and, admittedly, to soften the blow. Dad's response was: "Well, if I have to stay here, then I want my wife here in the room with me." Then I had to deliver more bad news. "Mom doesn't require the level of care that you do, Dad, so she can't stay here." 

It was just one of those awful, awful moments where you wish you could crawl under a rock. On the one hand, he understood. On the other hand, he didn't. He didn't understand why so suddenly, so mysteriously, his body was simply failing him. He didn't understand why he couldn't get the same care from Mom that he's gotten for 60+ years. Why can't he just go back home, sit in his chair, and have her bring him food, drink, etc? Because he can barely walk now. Because he can't safely get to the bathroom. Because he basically can't do anything for himself. Nothing. Nada. 

The only plus is that we are no longer in limbo. This is Dad's future and, therefore, our future. Now we reconfigure our lives and schedules to accommodate his and visit him as often as possible. 

And let me be entirely truthful, and transparent, because that has always been the point of this blog: Visiting him is no darn fun. It's a nursing home. Sometimes it smells like pee and poop. I wish it didn't, but the people there have troubles in that regard. But beyond that, visiting HIM is a challenge. He brightens up, oh so briefly, when you arrive. And then, he deflates again. So you try to make small talk (which I'm TERRIBLE at.) Sometimes, I end up talking to Mom because she's happy to talk about ANYTHING. We basically ignore the big, fat elephant in the room - Dad is stuck in bed, wearing diapers, with no ability to take care of himself at all. There, I said it. It's a terrible reality. But I think it's important that we smack ourselves in the face, repeatedly,  with the truth, in an effort to adjust to it. 

There is a cruel irony in the fact that I'm writing this on July 4th - Independence Day. Dad has surrendered his independence. There are good reasons for this - his safety and his health. The reasons do not make that fact any easier to accept. 

While looking for a photo for this blogpost, I came upon this article. Basically, it says that senior citizens fear losing their independence and nursing homes more than death. MORE THAN DEATH. Daunting, isn't it? We Baby Boomers are so damn smug about how we control our lives, but as we near the end, we don't really have any control at all. 

As we go through this process, I learn a lot - about aging, about my parents, about myself. I still have so many fears and yet, I have a few less. Part of all this is facing things I don't like - nursing homes was a biggie on my list. I probably would have grouped it into the "ickiness" column. Now, it's a reality that I face several times a week. 

Maybe I'll grow up through all of this. Maybe Hubby and I will create an end to our lives that won't be so difficult on our children. And yet, I'm not angry about any of this. It's difficult, but nobody is to blame. Yes, my parents could have made better financial decisions, but couldn't we all? Nobody is perfect and I can't expect my parents to be as well. Heck, one day my kids might be pissed off at all the beer and chocolate I consumed. 

If you asked my parents what they most wanted right now, I'm guessing that Dad would say independence and Mom would say someone to take care of her. Mom gets her wish. Sorry, Dad. I'm so very sorry. 

The Decline of Dad

Gosh, it's been a long time. You'd almost think that meant that nothing is happening. Hardly.

Dad fell a couple of weeks ago. Technically, he didn't fall so much as he "slid" out of bed, onto the floor. He couldn't get up and so Mom pulled the pull-cord and an aide showed up to help Dad up and to the washroom. And then it happened again...shortly afterwards. They called me as I happened to be on my way to their apartment. When I got there, Dad was in bed. I asked him to get up and out of bed so we could talk and he literally couldn't get out of bed. He couldn't sit up.

And so began our odyssey - first to the hospital and now to acute rehab/nursing home where Dad sits miserably. Sigh.

I've been in a terrible funk lately. Just kind of bummed out and unenthusiastic. I think what's happening with my Dad is what is dragging me down. He absolutely HATES where he is. I can't say I blame him. It's not pretty. There is a lot of activity, some of it generated by people who are either elderly and very uncomfortable or near death's door. It doesn't smell great, but I can't blame that on the facility. It's kind of icky. I wouldn't want to be there either, but that doesn't mean he's not getting great care. He is.

We're at this terrible precipice between Old Dad and New Dad. Old Dad (i.e. the guy who was funny, engaging, witty, smart) seems to be almost totally gone. New Dad has taken over. He's absolutely FLAT. No emotion, no enthusiasm, no interest. Complete and total apathy. Today I told him he looked unhappy. He said: "I am. I don't like it here." Imagine how I feel about that. I'm responsible for putting my Father in the last place on earth that he ever wanted to be.

And yet, let's be honest. It's where he should be. He can't get to the bathroom safely. He's fallen 3 times in the past week. He no longer cares about his personal appearance or hygiene. We're talking the beginning of the end. This is how he's going out and there's not a damn thing I can do about it.

Last summer, a big plate of cookies and an episode of NCIS made him happy as a clam. Today, I literally can't think of a damn thing to make him happy. Nothing.

So now we sit and wait. We wait for them to assess him and decide when he should be discharged and to where. I can't imagine that they will deem him appropriate to return to their apartment and, honestly, I think that idea scares the crap out of my Mom. She was already feeling overwhelmed by caring for him and now, she just feels like it's too much. I would too.

Then again, the tiny silver lining in all of this is that there is a new "lightness" about Mom. It's not like she's skipping down the halls happy that Dad is gone. But I sense she feels like a burden was lifted a bit. Somebody else is taking over the day-to-day Dad care. No small feat.

In the meantime, we visit. We try to be upbeat. We share news with Dad and try generating some kind of small talk. I told my brother that I try and stay for an hour, if possible. "It's a long hour, isn't it?," he aptly asks. Yes it is.

We could use a prayer or two. Happy Town is miles and miles away. Sigh.

Seasons of Love - The Care and Keeping of Parents

"Five hundred twenty-five thousand six hundred minutes

How do you measure the life of a woman or a man?"

Seasons of Love from Rent

It seems unfathomable that it's been a year. So much has happened since that chilly April day in 2012 when I drove my parents to Wisconsin. They had lived their entire lives in Illinois – in Chicago and the northern suburbs. Rather suddenly, my siblings and I uprooted them and brought them to live with us, for a few months, and now in assisted living.

If you’re of “my generation,” i.e. a Baby Boomer, you may be part of the “Sandwich Generation.” We suddenly find ourselves with responsibility to our children and our parents at the same time. For many, it can be daunting. For me, it’s been eye-opening.

I had never spent much time with older people. Truth be told, I felt uncomfortable around them. I couldn’t relate, couldn’t communicate well. They looked funny and they smelled funny. What if something icky happened while I was around them? (No, I am not proud of these feelings. I’m just being honest. I was a wuss.)

I’m of the opinion that God knows your deep, dark unspoken secrets and finds ways to help you face them. Or, as a small plaque in my kitchen reads: “The Lord is the source of my needs and blessings.”

Because of health and safety, my parents’ move had to be quick and decisive. In retrospect, this was also a good thing for me. I had little to no time to process how my life was about to change. Although, I do vividly remember bursting into tears the night before the move and then having a personal cheerleading session where I told myself to “suck it up, Buttercup.” I was pretty comfortable in my “empty nest life.” I had no need or desire to shake that up. Oh, silly me.

My parents lived with us for three months. I wish I could say that I was a perfect daughter/hostess/roommate. I was not. I whined…a lot. Sometimes, it was frustrating. Pretty sure I lost my temper. I tried really hard, and failed often.

And while I was frustrated, I’m sure that my parents weren’t completely enamored of their “new life” and being semi-permanent houseguests. If there’s one thing I know about my parents, they HATED imposing on ANYONE. Take my feelings and multiply them ten-fold. That is, I’m sure, how my parents were feeling. And yet, they were far more graceful about it all than I was. They NEVER complained. Not once. Thinking back, I’m humbled.

Eventually, we found a nice assisted living apartment for my parents. All of us were cautiously optimist. My parents would be living in a new place, with new people, for the first time in many, many years. Remember starting high school or middle school? Remember cliques and lunch tables and schedules and all of the stress associated with that? Well, imagine doing that when you’re 80 years old. Daunting, right? All of it was a learning experience…for them AND for us.

That’s the thing about this past year: I’ve learned so much – about my parents, about myself, and about life. This is the “blessing” part of this journey. I’m honest enough to say that never in a million years would I have chosen this path. And yet, here I am on it.

When I talk to friends about their aging parents, I have to bite my tongue to not give unsolicited advice. Over a year ago, a friend of mine, who is a nurse, suggested that I consider going to medical appointments with my parents because it would be so helpful to them and me. It seemed ludicrous at the time, but stuck in my head. I started to do a little of it then and now I do a lot. I’m so grateful to that friend for planting that seed of wisdom. I want to pay it forward and share everything that I’ve learned with everyone. But I realize that not everyone has any interest. They’ll have their own journeys.

One of the many blessings along this journey are the small conversations that I have with my parents. The other day, I was driving home with my mom from one of her doctor appointments. I complimented her on how she is so gracious and accepting of her health limitations, especially, but not limited to, macular degeneration that leaves her with virtually no vision. She said: “Oh I don’t know. I guess you just have to accept where you are and learn to live with it.” For somebody who has been transplanted and moved around like a virtual gypsy for the past year, that seemed rather amazing.

And so the journey continues. New challenges crop up all the time. I’ve become my parents’ chauffeur, medical advocate, personal shopper and often their confidante. I am, literally, all up “in their business.” I know they wish it wasn’t that way, but I’m discovering that we all end up in situations in which we wish we weren’t. Grace is what helps us cope.

There is a quote at the end of the movie Life of Pi: “I suppose in the end, the whole of life becomes an act of letting go, but what always hurts the most is not taking a moment to say goodbye.” I couldn’t help but think these were wise words to guide me on the rest of this journey.

Guilt Trip

It's been a long time - over three months. Not much has really happened and yet so much has changed. I've had so many thoughts mulling through my brain these past three months. Yesterday, I finally had to do an email "brain dump" to my siblings. I disguised it as an update, but there was nothing really new.

The gist of the update - Dad has checked out of life. Oh and I feel terrible about this.

No, seriously, he has checked out. He spends his days staring at the TV. He watches shows - NCIS, of course - that he's already seen again and again and again. Sometimes he even watches with the sound off. Perhaps he makes up his own dialogue in his head. I have no doubt it's better than the actual script of that show, but that's a whole 'nother blog.

I'm constantly bringing him books, in hopes to engage his mind. I want him to be interested in something...anything. But he's not. My hubby thinks he just doesn't want to read, but I won't give up.

He doesn't move and therefore his legs are getting weaker and weaker. He really struggles to get up. Mom is worried. The nursing staff at the facility is worried. I'm worried.

We're in a downward spiral and I feel SO guilty about that. I said as much to my siblings and they both responded with virtually the same sentence: "You are not alone in the guilt..." How can three pretty smart people feel guilty about something for which we have no control? We all know that it's up to Dad to improve his condition and yet we feel badly that his life has deteriorated to this point. Maybe because we felt like Dad was there for us when we were total idiots at points in our lives. We feel a strong sense of responsibility to fix his situation. And yet, we all know that it likely won't improve.

Yesterday, I took my parents to lunch. Mom was absolutely dying to get out of the facility. Can't say I blame her. Mom asked Dad to tell me about his "driver's license." He proceeded to tell me that he's going to appeal the revoking of his license. I then had an awkward conversation about how he's not really fit to drive and how a year ago, a whole team of neurologists tested him and deemed him unfit to drive. I also said that I didn't feel comfortable with him driving because of his general weakness. He told me that was unfounded.

And then I asked him if he had his license, where would he go? "Walgreens." That's it. Not the border or back home or anywhere but here. Just Walgreens. I understood. It's not about where, it's about independence. We've taken EVERYTHING away from him. (Yes, it's for his own safety, but still.) He wants control over something...ANYTHING.

In a perfect world, I'd give him a vehicle - a bumper car or maybe a golf cart or maybe Bubba Watson's hovercraft. He probably wouldn't go very far or very often, but he'd have the feeling of independence. He'd be in charge of something. But I can't do that. It's not safe for him or others.

It's funny how I've reached a stage in my life where what makes me happy is what makes "my people" happy - my hubby, my kids, my parents. And when they're unhappy, I feel the intense need to fix it all and the overwhelming and sad realization that that's not my job.

Sigh.