Will The Real Michelle Please Stand Up?

I'm tired. Sometimes exhausted. Most of the time I'm great. It depends on the day and which Michelle shows up for the job. There are many personalities that inhabit my caregiving. But when I'm not great, when I'm tired, I question my decision to take dad in. I start to ask myself "self, was this a good idea?" "is it time to put him in a home?" "would he be happier surrounded by others or would he feel lonely?" "would I really be happier if he weren't in our home?" "would he?" "am I doing a good job?" "should I have reacted differently when he did that?" My many selves know the questions are endless and there really is no right or wrong answers to most of them. And it depends which one of me you ask...

In February we will start our sixth year. Dad, Tom and my many selves. One big happy family. Sometimes Tom jokingly asks "who am I speaking to?" A reference to Sybil. He's careful which me he says that to. Some of me's are cool with the gentle tease, some of me don't like it! He's learned to see who has emerged to care for dad that day.

Let me introduce my selves. There is Michelle, super christian. Michelle the wonder woman. (these two can merge to form one super duper Michelle!) Michelle the artist and writer. Happy go lucky Michelle and risk averse Michelle. There is co-dependent Michelle and independent Michelle. Compassionate patient Michelle and hurry the hell up Michelle. Just let me cry it out Michelle and crazy-better-get-the-straight-jacket and book-the-padded room Michelle. And these are just a few we have identified. The ones that show up most often. Did I mention that I can be one Michelle in the morning and a completely different Michelle by noon?

Caring for dad didn't give me multiple personalities. The Michelle's have always been here. But care giving has given a few of them a voice that is louder and a force that is more urgent. Maybe I'm older and can't control them as well. Or maybe I'm older and have just made peace with their presence. I do know I value some more than others and that I've learned lately that we all need each other. Cry it out Michelle occasionally needs to hear from Suck it up Michelle and OCD Michelle occasionally needs to listen to who the hell cares? Michelle. We all have a part to play and a job to do.

 I've earned my Michelle's! And I've learned my Michelle's. I've learned that while she is a necessary part of me, cry it out Michelle can get a little dramatic. Suck it up Michelle has no patience for her but is at a loss when it comes to reigning her in. She can't hear because she is sobbing so loudly!!  Super Christian Michelle when teamed up with wonder woman Michelle are a force to be reckoned with, but are too much alike and tend to crash and burn quickly. They are best tempered with mild mannered Michelle or better yet filled with the spirit Michelle. Crazy-better-get-the-straight-jacket and book-the-padded-room Michelle don't come around too often, since NONE of my others likes that one!

And so you see, I am never alone in my madness. If you thought I was nuts to take my dad into our home, this might just prove your point. And then again, they say it takes a village to raise a child. Maybe it takes a lot of Michelle's to care for one Sam?

Finishing Well

My mother always said "if you're going to do something, do it right". It's a good excuse not to do anything, since you know you can't/won't do it right!  And we had some pretty high standards in our house, so there was this thought process in me that said-if know you can't do it well why bother? It's a cop out really, but that saying, said by my mom repeatedly, shaped me. It's part of who I am now, and I believe it. There's something to be said for doing a thing to the best of your ability.

And along the way I picked up another...what do I call it? Life lesson? A goal? A burden? Ha-sometimes high standards can weigh a person down. This "standard" is: if you start something, see it through. Easier said than done and I don't think everything is worth finishing. I really don't. Sometimes it's just not worth the effort.  But I try to finish what I start as a general principle. And again, why start something if you aren't going to finish it? But do I finish everything? Heck no!!

All this leads me to my post today. When Dad gets hard to live with, or I get burned out, (or both at the same time!)  I wrestle with doing this right and seeing it through to the end. They are two different ideas or standards that can be done separately. One is hanging in there and toughing it out and the other is the quality of the job you are doing. You can just hang in there or you can hang in there and do a thing well. Lately, I've just been hanging in there. Don't get me wrong-there's value to hanging in there at times. I do, somehow, by God's good grace, stay married!! (Tom is a saint) So I think we have to decide what's worth finishing. But if a thing is worth finishing, isn't it then also worth doing well? To the best of our ability?  The meatier business, the challenge then, is finishing well.

So as I was thinking about writing this, I reread some of my previous stuff. Stuff I've published and stuff I haven't. I noticed a trend. I write after the fact. After a lesson has been learned or after I've had that "ah-ha" moment. It's why my blogger address is titled sacred-caregiving. Here are the first two definitions of sacred:

Sacred-adjective

1.devoted or dedicated to a deity or to some religious purpose; consecrated.

2.entitled to veneration or religious respect by association with divinity or divine things; holy.


I've said before that I feel this journey is less about my dad and more about what God is teaching me through caring for him. I dedicate this work of caregiving and this blog to the God who gives me the strength to do it. But I must admit, there are days, weeks and sometimes-those weeks stretch into months-where you would really wonder if that's true. If you saw how I behaved, my impatience, my sharp tongue. Days, weeks & months where I'm not doing it well at all. Hanging in there, yes, but doing things well, no. Burnt out, bummed out and ready to throw in the towel.

And thank you if you want to write me and tell me these feelings are normal and not to be so hard on myself. That it's a hard job and my feelings are valid. That may be true, but it's not a pass to speak harshly to him or to be unkind when he does something on purpose to irritate me. (I believe it's the only sport he has these days-and he gets reaction every time!! You'd think I'd learn??? ;) The irritation that rises after telling him the same thing six times in the same hour. You'd think knowing he has Alzheimer's would imbue me with supernatural patience and compassion. Wish it did. I still get irritated. No, there's a higher standard for this. A way to do this right. And I can't seem to do it right. But when I do catch that wave of love and compassion, I know its not me, and its sacred.

So as I reread my older stuff, my own blog ministered to me. Ah, and there is what's been missing! I keep trying to do this myself. To tough it out and push through. And I'm glad I did because out on the other side God's grace fills me with compassion, tenderness, patience and love. It's an ongoing process of learning to lean on God for the grace to do the job. Maybe one day, I'll learn this lesson? Because I do want to finish, but more importantly, I want to finish well.

On a Clear Day

I write today from my heart. I'm not going to second guess it or save it and read it tomorrow to see if I should put it out there. I write to give it my voice and to join with others who have or are going through the same. There is something about shared experience that makes it easier. So this is for me, but also for all of you I know are going through the same thing. I hope it encourages you.

I try to keep a glass half full approach to life. I live with a glass half empty dad these days. I wouldn't say he's unhappy, just old and tired and sort of done. His favorite saying is "the golden years suck!" His perspective is skewed by his losses and the betrayal of his body and mind. In his mind the good is behind him. I try not to judge that or lecture him to "look at the bright side", because I'm not sure he hasn't earned the right to it. I don't remember if he was so negative before mom died, but I don't think so.

 I tried to get dad to the barber this morning, but he refused to go because "I'm just too tired. I'm always tired anymore. I'm just tired. Let me sleep."  With those words was a weariness of the soul. I cancelled the appointment. Some days are better than others. I do my best to make his days easy, but I understand his limitations. Again, at 92 he's earned the right to take a nap an hour after he gets up!!

He would never say he's got/had it bad. He's just living in a very small world right now. That's hard for a guy who's seen most of the globe and done almost everything he wanted to do in life. So the glass really has emptied for this man who had the world by the tail most of his life.

 But sometimes I catch myself falling into the half empty glass with him. Because I live with/see daily the loss that comes with age, it's hard not to look down the road and think "well crap, this is gunna be a bummer!" When just getting out of bed is exhausting. And then I remind myself that while I may be captain of my ship, I have absolutely no control over the weather. Sure, I can steer the wheel. And on a clear day that might get me somewhere. But during a storm I am at nature's mercy and my best bet is to make sure I have a sturdy ship that can weather that storm. Because there will be another storm. One of the lessons I'm learning is: put up the sails and cruise for all its worth when the weather is good kids!

And another message I heard today: When the glass begins to look half empty and you see your parents enduring so much loss, you need to make sure your ship is storm ready. I know that God is in control and while I do not understand it all-deep in the why's and the "are you kidding me's?"-I've learned to trust even when I can't see through the rain in the storms. Sometimes I understand the why's later. Sometimes I don't. But to realize that He is the master of the clear day as well as the storm and that only He can keep my ship from sinking!

The storms serve a purpose. They help us understand our place in the scheme of things and the limitations of our ship. Our destination has more to do with where the storms blow our ship than our skills as a sailor and how well we sail on a clear day.

Just some thoughts on a clear day. Put up your sails and take your parent out on the water.

Soul Care

Warning: this post has lots of heavy spiritual stuff. If that's not your thing, now is a good time to opt for another blog!

dad watching TV in the hospital bed

I've been so busy lately that I really haven't had time to blog much. (I write them and don't finish them so I have a bunch I need to finish and post) When dad is doing well I tend to get busy. I'm not sure what I do, but it started last spring with the yard and garden and its just kept going. So it's good that dad is doing well. And it gives me a reprieve. That can all change with the blink of an eye.

Two weeks ago, out of nowhere, he spiked a fever and lost all the strength in his legs. I've been down that road before, so I wasted no time getting him to a doctor. Well, I tried Urgent Care first, which was a waste of time and we ended up in the ER and then the hospital for five days. He has bounced back really quickly this time which I'm very grateful for. He was able to come home instead of going to rehab. A decision that I may have made to quickly-because Tom and I both ended up with the same flu-and baby, what a ride-but because he bounced back so quickly and is gaining so much strength with the in home therapy it's all come out alright. But this last round in the hospital got me thinking. About time. How much time do I really have left with dad? 

I'm very much a doer. If Jesus were over for dinner I would definitely be a Martha. If you know that story, you know Mary was at the feet of Jesus, and Martha thought Mary should be helping her with the work. The Martha's of this world relate. We understand there is a job to be done and someone has got to do it. But what the story is all about is that you miss the best thing while you're doing the good thing and "getting stuff done".

I had been thinking that I'd been so busy that I hadn't been taking the time with Dad that I should. I provide for his needs and do the work that by now is second nature to his care, but I have been missing a vital piece. The caring for his soul. I've written about this before, I think, and I believe it should be THE priority in my care taking-so why do I find I've let this slip through the cracks? Because I got busy being Martha again.

People need to connect. To be loved. It is our most basic need. How often do we care for people in the most practical ways yet miss the most important way. To care for a child, spouse or a parent's physical needs-but be so busy "doing" we miss doing the more important work of feeding their souls? I realize that it's not an actual job or something tangible that I can mark off a list. But darn it! Why isn't it? So, I'm going to put that on my list. 1) exercise 2) finish laundry 3) attend to dads soul care...Or better yet 1) attend to dads soul care 2) exercise 3) finish laundry. 

And how can we do this? How can we honor a parents soul? A caring touch or a hug. Looking into their eyes when you ask them how they are this morning. Listening, when you ask how they are. Making time to talk to them for more than just a mealtime conversation. Letting them tell the same story you've heard a hundred times as though it was the first time. Making them feel valuable and important and useful, when society says the exact opposite. Saying "I love you dad". These are a few, but you get the drift. It's the little things. The things we can forget when there is a flurry of activity and things to get done.

The elderly have to deal with an incredible amount of loss. I spend a lot of time with them anymore and I can tell you the losses are many. Most have lost a spouse of many years.  Loneliness is huge in that demographic.  As is depression.  Taking care of their physical needs is of course critical. But taking care of their soul needs is a little harder. They may have mental issues that makes it harder to figure out what if anything you can do for their soul. But Alzheimer research has shown that music can open up the soul of a person otherwise closed by the disease. There is much research on the healing effects of touch and smell. My experience has been that while that person is not who they used to be there is still a soul locked in that mind. Even those whose minds have been ravaged by the disease may respond to something deeper that touches their soul. 

So, while I don't want him to go to the hospital again, it did snap me back to the realities of time and lack thereof. Being a busy Martha it's easy to be distracted by the physical needs in the world. It reminded me to make sure that my care taking is as much about the soul care as it is about his physical needs. And slowing down always gives me the gift of intention. When I go through my day with intention I can lay my head down on the pillow at night and even if I've checked nothing of my "to do" list, I can sleep well knowing I did what was really important that day.

It's All Good!

"It's all good" is a phrase my son used to say a lot a few years ago. It kind of means "that's fine". I liked the saying, because I like the idea that it's all good! "Hey, sorry I didn't call you back"--"it's all good man!" That type of thing. No sweat. No problem. It's fine. It's all good. Looking over my blog posts I feel like they have been mostly about the hardship and negative side of caring for dad. And don't get me wrong, it's been no easy road. But I'd like to share some of the good things that have come from it. It might not be all good, but it hasn't been all bad either. 

I want to talk about two things in particular, that have to do with time. The first is that I have the time to spend doing things I was too busy for before. One of those things is more time to spend with God, reading the bible and meditating on it.  A key to my mental well being was seeking God and looking for his presence and purpose in my situation. I can honestly say that it deepened my faith, but it also taught me a lot about myself and how God can change me to be more like Him through my circumstance. If I'm paying attention. And that's key. 

The other thing I learned in relation to time is that we only have a finite amount of it. Most of us don't really think about that so much. But when you're around someone who's time is running very short, it sort of becomes a dominate theme!! Though that is looming large, the lesson for me here was to really listen to my dad and his stories. I've had precious time to hear my dad's stories. The memories from his life. Alzheimer's robs them of short term memory first and then more slowly erodes their long term as well. Dad is in mid stage and still has pretty good memories from his past. In the beginning, he would repeat these same memories over and over again to the point I found it annoying. And then I started asking people "did I already tell you that??" It's one of the hazards of living with someone who's memory is failing--you start to wonder where yours has gone!! 

One morning during the time I spent with God, I felt him speak to me about my attitude toward dad and his stories. That night during dinner dad began a story I had heard already earlier that day. I turned to my husband and did the eyeroll. My husband did something I'd never seen, or at least never registered before. Instead of uh-huh-ing my dad he asked him a question about his story. Now we both knew the answer to that question, but dad's eyes lit up and he told that story with gusto! I heard that still small voice tell me to hold on to that. To learn from it. My husband was valuing my dad and his memory. I needed to do the same. I learned to listen to his stories as though I had never heard them before. I was attentive, not annoyed. I asked questions instead of saying "you already told me that!" I valued them as a part of my dad. Memories of the man who's time was now short. 

As time went on I began to realize these stories would die when he did. So I began to write them down. I got this bright idea I would would write them down and illustrate them in a nice journal, so I began to write them down. He doesn't know that he's told us this stuff for the 847th time. He's thrilled for someone to listen to his stories. These are his life. What he remembers of it anyway. As I recorded them I realized they were more than just memories. He remembered these particular things for a reason. They have meaning to him. Recording his stories, his memories, has really enriched the time I have with him. It turned a situation that has been troubling (it reminds you when they repeat things that they are slipping)  and irritating (I cant help it, I'm human) into a way to know my father better. I understood that these stories were his view of life. They are of adventures and friendships. Of my mother and our lives as a family. His childhood, and travels. They are what he's left with. And while that may be sad in one sense, it is a blessing to still have him around with the ability to tell these stories. It is an honor to be able to save them and use them in my art. And when I realized their value instead of viewing them as a symbol of his failing mind, they changed me. I was so wrapped up in the sadness of the repetition and that he seemed to only remember the past, that I was missing the now. The blessing in the here and now! And the blessing of being able to share in and record a well lived life. 

You see, what we feed is what will grow. If I had fed that irritation, that dismissal of the memories he had left, I would have robbed us both of a priceless gift. I'm glad God gave me the insight to slow down and take the time to cherish these stories and give them the importance they deserve. To honor dad by listening each time as though I'd never heard it before. To let him tell his stories and remember his life. The good and the bad. To mine this rich history that is part of my history as well.

So I am journalling these slowly, with intention. Occasionally he will tell one he hasn't for a while and that I don't have down yet. I will scramble to write them down, often on a scrap of paper if we are out, but I make a way to record them. I have many pages and loose scraps that I have to get busy and put in the journal. After I understood the lesson God was trying to teach me, a verse in the bible reminded me that this whole journey has a purpose. Its a commonly known verse. Romans 8:28 And we know that in all things God works for the good of the who love him, who have been called according to his purpose.  If we take the time to ask God for the lessons and pay attention to His answers we can find the good in every situation. That's my biggest take away from all this. There is a reason, a plan. For my good. For dads good. So, you see, it is all good. 

Caretaker Cap

The other day in a parking lot dad and I saw a mama goose sitting on her eggs in one of the medians between parking spaces. Mr. Goose was strolling among the spaces, standing tall and walking proud. My dad proceeds to tell me (again for the hundredth time this spring :) that geese mate for life. We only saw Mr. Goose and dad was afraid that he was without a mate. Any time we see a lone goose, he tells me how sad it is and that geese mate for life and they don't know what to do with themselves if the mate dies. That last bit is his slant and I believe it's significant to him, given his loss. Anyway, on our way out of the lot after doing my errand, he asks me to drive by Mrs. Goose. I drive up next to her and roll down the window and we talk to her and ask her if she's having a good day sitting on her soon to be goslings. Dad loves this and as we drive away he laughs and says "that's a joyous thing-nature is so wonderful!" What an old softie!

Those are the good times. It's times like those that make the hard times worth the trouble.  But there are hard times. Many of these posts address the mental aspect of caretaking. And the mental stress will lead to physical stress if it goes on too long. You need to stay healthy. I really underestimated the stress piece of caretaking and the way it would affect me, or how important respite would be to my overall health. And why do we need to take care of ourselves as caretakers? Say it with me now--"you can't take care of someone else if you are sick yourself!" The stress of caretaking can show up physically, mentally and spiritually. And trust me, it will if you don't learn to manage it. Now, let's talk some more about the mental stress.I want to talk about a shift that took place in me that helped both my dads stress and my own.

This is not easy for me to share. I feel vulnerable, and yet I know it's not unique to me. I am not the first to feel these things or walk this path. But I felt very alone at the time. I was watching dad's mental decline and not really understanding  what was happening (you really never will understand dementia/Alzheimer's. There is just so much we don't know yet), how long it would take or how it would look in a day, a year or three. I never anticipated his resourcefulness and ability to hide his illness or make it seem as though he meant to do what he did. Sometimes he did mean to do a thing and then would blame it on the disease-(pretty smart huh?)-I think, to have some control. It was very confusing and frustrating.

 Bringing him here meant selling his house and most of his possessions. It wasn't the "things" so much as what it meant to give up everything you own and all your independence, bring only what you could fit in two small rooms and depend on others to care for you. Dad has always been the one everyone depended on. A strong, independent man. He just did not understand why we were doing this, and while he knew he had issues (we tried explaining them to him) he just somehow didn't believe it. That it was that bad. That we needed to be this drastic. He was a mess of conflicting emotions, in denial of his issues-yet he almost seemed relieved to not have the stress of living alone. He was angry with us for "forcing" the move, but thankful that we were there for him. One day he would ask you to start doing something that was difficult for him and the next be angry you were doing it. And all the upheaval was really hard on his mental state.

 After he moved in, he was a hot mess. He cried and argued over everything. He was clearly taking his anger and frustrations out on me and while I knew that, I couldn't help but be heartbroken. He viewed me as the enemy of his freedom. Yes, the others had a part, but he viewed me as the one who ruined his life. (still does) And in a way I was. The next moment he was thanking me for taking him in! It didn't matter that it was what was best for him, his fury was hard to take but I understood it in the way you understand something that you know you might experience yourself someday. You don't really understand, but you can imagine. And I hadn't really thought this through. I just needed him out of that house before he burned it down or some other calamity happened!

And so here we were. Both of us completely miserable. Dad was obviously depressed. Nothing I tried was working and the depression in combination with the mental confusion made for some pretty tense times. I've talked about depression being the #1 issue for the elderly and he was pretty bad off. I took him to the doctor and asked the Dr. to suggest medication but he would have none of that. He wasn't depressed and didn't want to be on any more drugs. It was then that something clicked for me. I understood in that office that dad was not thinking clearly for whatever reason, depression or dementia-it didn't matter which, and it was my job as caretaker to make those decisions for him. With the help of anti-depressants he could live the remainder of his life happy and not depressed. So I got a medical power of attorney and I put him on anti-depressants and I've never looked back. I told him I did it, he pitched a fit, but there was nothing he could really do about it. And he forgot soon enough, which can be my greatest working tool at times. I think that was when I understood that I wasn't dealing with my dad anymore. Not really. I was dealing with a shell of the man I called dad. His pride and fighting spirit were in tact, but they were misdirected and not guided by reason.

It was that day, in the doctor's office that I really stepped up from daughter to caretaker. And I cried that day. The loss is so great for a parent if they live long enough. Little by little life takes back all that it gave. It's not fair. Some handle it better than others. But dad has never been one to go down without a fight. I respect that and at the same time I was trying to find a way to honor that without both of us going down in flames-because he raised me well and I can be as stubborn as he is! Learning not to fight or try to reason with him but instead take the reigns as caretaker was an adjustment. Between his meds and improved mood and my understanding of my new role as caretaker first, daughter second, we were able to move forward to a better mental place for dad. For me, it's been hard to adjust to being the bad guy and making decisions he isn't going to be happy about, like getting rid of his car. And it's tricky because the Alzheimer's makes things murky. I am always trying to be careful not to do too much for him or do something just because it's easier for me. Now, when I come to uncharted territory, I put on my caretaker cap and leave the daughter cap on the shelf. I try to see it clinically and I do research to make decisions that are the best for everyone.

Things are better now, three years in. I feel blessed that he's in as good a place as he is. He doesn't  fight much with me anymore or buck my "authority", but he still makes hurtful comments sometimes. Still calls me the Nazi, dictator or whatever the current slam. I try not to let it get to me, but the daughter inside winces.  I tell myself he wouldn't hurt me if he wasn't hurting so himself, and I know that's true. I know the old dad, and if he could reason or see things clearly, he wouldn't have waited as long as I did to step up if things were reversed. My struggle has been to realize when I need to step up and that has changed over the years. Every so often a new challenge arises and I need to shift into caretaker mode. But these days I enjoy many more days with my daughter cap on while we enjoy the simple pleasures of a couple of geese!!

Keeping it Real

In the spirit of keeping it real, I have a confession to make. I'm not enlightened or have all the answers. Bet you knew that tho, huh? If you know me at all, you may even wonder who the spiritual chick is who writes this stuff! All that spiritual stuff I wrote about, how you just have to obey and give it all to God-that stuff-it's all true and I really believe it. But sadly, I don't do it all the time. This is real, and I am human. And the real, human side, fails.

A few days ago I returned from a beautiful vacation. My husband and I have been married 36 years and these last year's have had their share of struggles. We had a little extra cash and decided to pop for a vacation to Cancun, Mexico, at a lovely resort there. It was fabulous. When I talked about respite a few posts ago, I only wish everyone could take that kind of break. Sun, sand, surf, food, drinks and entertainment to your hearts content. I did nothing I didn't want to and someone else fixed my meals and made my bed. Everyday. It was awesome. Until we came home...and then there is reality.

After traveling all day, getting home a 1 A.M and not getting enough sleep because I took my brother to the airport the next day at 4 A.M., reality set in. And I had a huge meltdown and pity party. Rather embarrassing, looking back. I was nasty to my husband, angry that I had to serve everyone while I wasn't feeling good. (which I really didn't) I called my daughter and cried that I was tired of caretaking and that the only solutions to that both sucked: putting him in a home or his death. I felt extremely sorry for myself. My daughter may have thought I was nuts, but never said so. She may, in fact, know me by now? She just listened and offered to pray for me and I felt comfort. I did ask God for help, but I admit it didn't look to hard for any answers. I was exhausted and sick and let my emotions run wild. (I'd been sick my whole trip, but sick in Cancun beats the heck outta sick in Ohio!)

And then sanity spoke. Reason once agin made herself known.  It stunk to come back from such a great vacation and back to caretaking, but the one I care for can't even travel anymore. Travel was the one think he loved almost as much as my mom. Here I was whining after a great get away and he will never see far flung places again. Suddenly I was so ashamed of myself for feeling that way. It doesn't happen very often anymore, but this was pretty bad. I really didn't want to "caretake" anymore. A day later, I feel privileged to do this work. And that's real too. One day its awful and you hate it and the next it's not. Emotions are fickle. You have to pay attention to them sometimes, but you also have to know when they are not helpful. They are not my reality. Not my where my strength lies. If I hadn't called my daughter, said these things out loud and heard their selfish hollow whiney sound, I might have entertained them longer. I'm glad I acknowledged them and saw them for what they were. They are legitimate, but held up to the truth they lose their power over me., I don't mean to downplay the burden of caretaking. I know how hard it is. But it's just as hard or harder to be the one cared for. The one for whom life's light is growing dim.It's true that I have a lot on my plate, but I really have learned to turn it over to God in whom I find my strength. It's also true I feel confined, but I also know my dad is really confined and that I still have freedoms and abilities he has been denied-not by his own will-but by his age and diminished capacities. I have chosen this, I still have a choice. And for me this will end and I will again have my freedom. There are many out there for whom caretaking will not end any time soon. 

My focus was wrong. It was on me and the negatives. When I turned my focus off myself and my burdens, and gave thanks to God for the positives, my perspective and attitude changed. I gave thanks for family that helps. I gave thanks that he can still walk and hold a conversation. I gave thanks that we can spend time together, and go out to lunch once in a while. I gave thanks that he has what memories remain and that while I may hear the same stories over and over again, these are his memories and are important to him, and we get to share that with him. I gave thanks that I am in a position to care for him. And the list goes on.  And as I made my list, I felt the dread and sorrow leave. 

I don't want to diminish my feelings or give the impression that this isn't hard and as a friend put it "those feelings are valid and you shouldn't feel bad for feeling that way". They are valid. But the things you feed become the things that grow. Sure it's tough sometimes. But it's been worse, like when he was ill, and right now we really are in a sweet spot and I honestly am feeling pretty lucky overall!! Today. Glad I didn't write this the other day. And in my defense, I had been sick all through my vacation, just traveled 12 hours and hadn't had much sleep. All of which contributed to my little melt down.Exhaustion is a caretakers enemy-even though I'd just had 7 pretty restful days-exhaustion is quick to take a swing at you, and usually levels a pretty good blow.  I later had a little girlfriend time where my friend who is a teacher said she gets a little down when summer ends and she goes back to school.  It's not that she doesn't love her job, but some years are hard and a job is, well, a job. Caretaking is work. And while its important to take a break and get away, sometimes it stinks to come back and at the same time it's good to be home!! That's keeping it real! 

But I Don't Want To God!

This post of the series Who Takes Care of the Caretaker will focus on the spiritual side of caretaking and why I believe it is a sacred duty. I can’t say truthfully that I wanted to take dad in. I did it in part because something had to be done. I did it because I knew, from the time 20 years earlier when my aunt went into an assisted living facility that that was not what dad wanted. I remember many times going to see her and after leaving dad would say “I don’t ever want to end up in a place like that!” He was quiet adamant about that. So we knew he didn’t want to do that. I did it because we had honored my mother’s dying wishes by caring for her, we should do no less for dad. I did it for all those reasons, yes. But it doesn’t mean I wanted to. And though those are all good reasons, they are not the reason I took dad in.

When it became clear we needed to push for some type of move, my sister and I tried twice unsuccessfully to get him in an assisted living.  He had a million reasons why he didn’t need to be there and short of declaring him mentally incompetent, which I’m not even sure we could have done, he was NOT doing anything he didn’t want to. While he knew he had issues, he was in complete denial that they were as bad as they were. I was over every day, several times a day caring for him and was exhausted. One day I thought to myself that it would just be easier if he was living with me. And that’s when the idea came to me and I thought—“no way! Are you crazy? You would all be at each other’s throats in a week’s time!!”And I dismissed the idea as easily as I had it.

Several other incidents happened in the next few months that compelled us all to agree that he was not safe at home alone anymore. But true to form, dad was stubbornly not going into “one of those places”. And he especially wasn’t going anywhere without his beloved dog. And that’s when I heard the still small voice in my head. “NO!” I said-“absolutely not! He has means and I have a busy life-he will just have to go into an assisted living.” And I determined if it had to be by force then so be it. Forcing someone is a whole big deal, and none of us wanted to go down that road. Not to mention he was in such a bad place I think we all thought it would kill him. But I certainly couldn’t take him in! It was just too much.

Well, I couldn’t sleep worrying about him and what we were going to do. Unfortunately I could still eat…some people can’t eat when they are stressed and I really envy that! Wait, how did I go there??!! Back to the subject. I was a wreck and in my spirit I heard a voice saying “honor your father and your mother- not just your mother, but your father with all his issues too”. “But mom was dying of cancer!” “So is your father…and this is what I want you to do. I want you to minister to your dad and care for him both in body, soul and spirit”. Now I don’t hear God audibly. Some do. I never have. I didn’t have any dreams or visions. But I’ve been a Christ follower long enough to know when God is speaking to me. I’ve also ignored it enough to know I will miss the blessing if I chose my way. And I’ve grown enough through the years that I know that no matter what God takes me through, he loves me and will sustain me. But did I mention I didn’t want to do it??

I fought this for all I was worth at first. I knew it would be hard. I knew he was ill, wouldn’t be happy and would take it out on me. I knew. I knew I didn’t have the patience and all the other traits needed to care for him. I knew because I was played out already and he wasn’t living with me yet. And I knew God certainly didn’t want me to sacrifice myself for my dad. Wait, what? Jesus sacrificed himself for us? That’s the example. Well, I reasoned “I’m not a saint and neither is dad. I’m also no martyr. Surly I’ve made a mistake and this is not the voice of God. It must be guilt or the path of least resistance. There must be another way!!” And I’m sure there was. But not for me. The more I struggled against it and prayed for God to take away the idea or not let it happen somehow, the surer I became that yes, this is what God wanted. I wasn’t what I wanted. It wasn’t what dad wanted. But through many things that pointed that way, God made it plain that this was what He wanted. And I still always held a thought that either it wouldn’t be long or that if it didn’t work out, we could more easily transition him to a memory care unit.

I think from my past writings you can tell that it has not been an easy journey. Nothing worthwhile ever is. I had to give up my teaching and other activities to be there for dad because of the Alzheimer’s.  I struggled with resentment. I struggled to meet his needs with the right spirit. I struggled when he was ungrateful. I struggled when I saw others with the freedom I had given up. I just struggled. And what I can say is that through those selfish struggles, through the grief, through the depression, yes all the bad stuff, God always blessed with the good stuff. I wrote in my second post that God taught me to lean in and depend on His strength and not my own. He gave me compassion when I had none. Peace when I was upset. Strength when I was tired and weak. Patience when I wanted to wring that old man’s neck! All that and more. All I had to do was come to Him. (Mt. 11:28-30) He gave me time with dad. I wasn’t just a way station between this life and the next. This was a sacred time to help dad heal from old wounds, to help him salvage his dignity in the face of his disease and time to form a deep bond with my dad. And it was a time of deep personal growth for me.

There is much more I can say on this subject, and will I’m sure in later posts. But for now I will end with these thoughts. I have Amazon Prime. I can order something online, pay no shipping and be guaranteed two day delivery! Because I know I don’t have to pay shipping I just order all kinds of stuff online now! (It’s a beautiful thing for those who can’t get out to the stores. It’s also dangerous! J ) What you have to consider is that it costs up front. I’m pretty sure in the past I wouldn’t have ordered enough stuff in a year to pay $99 in shipping (which is the cost of Prime, but my son got it at a student rate), but because I have Prime I’ve ordered well above that by now. So it has paid for itself. And here’s the lesson. There’s usually a cost to obeying God. It’s not a “you do this for me and I’ll do that for you” thing. It’s a loving relationship where He has sacrificed his life for me and I in turn sacrifice my will to Him. (Did I mention I didn’t really want to take dad in?) So while there may be an upfront cost to obedience, God’s resources for the task are then there for the asking. I don’t mean to trivialize obeying God by comparing it to Amazon Prime, but I know from experience that the blessings I’ve received from doing this sacred work have far outweighed any price I ever paid to obey.

Taking care of an elderly parent, no matter the situation, I believe is our sacred duty. Honor your father and mother is one of the big ten. (Commandments J) How each of us does that looks different. Just because I took my father in to our home does not make my duty any more sacred than yours. Putting someone in a home even if they don’t want to go doesn’t mean you are honoring them any less or that by taking mine in I did it better or right. Or that one or the other is easier or harder. It is all hard!! You are still caring for that parent in the best way you can for everyone involved. For me, it was made sacred by my dependence on God to take what was a difficult situation and place it in His control. To let go and as they say, let God. To ask Him for His spirit and resources to honor my dad and show him respect while caring for him. And in doing that my faith grew. I wonder if God telling me to care for dad was more for me than for dad. 

Who Take Care of the Caretaker-Pt. 4

Disclaimer: you may need that comfortable chair and cup of coffee because this one is long! I could have broken it down into a few shorter posts, but I think I would lose the flow, so I just went with it. It might be a little disjointed anyway and might be a little choppy, but here is more of how I took care of myself mentally.

I think we’ve established that caretaking isn’t easy! And I hope I’ve made it clear that that stress of caretaking will eventually catch up to you if you aren’t careful and guard yourself physically, mentally and spiritually. The mental/emotional side was where we all had issues. I really didn’t think caretaking was going to be so hard on me emotionally. I don’t think I was being naïve. I knew it would be hard. I just didn’t think it would be as hard as it was for as long as it was. I knew in the beginning it would be rough until we all adjusted, but I didn’t anticipate that dad wouldn’t adjust. And he was not adjusting. I underestimated my own limits, but I really underestimated his. Given everything he’d been through in his lifetime, all the moves and upheaval, I really didn’t expect this move to be so hard for him. He’s moved and adapted so many times. He had been through so much and always snapped back. Why was this adjustment taking so long? Wasn’t he the first to tell me to “buck up”? You don’t “buck up” from this!

Looking back I understand that that kind of upheaval for an elderly person is monumental. Now I also understand that he considered this his last move. And whether anyone wants to admit this or not, that “last” move is the one you make before you die. (I will write a little more about that after this series is done) There was so much wrapped up in this move and add to that that he was still grieving my mother and the life they had together. He was alone now. He hadn’t been alone in 64 years. Not that kind of alone. Oh, he’d spent plenty of time alone in the military, but there was always the reunion when we joined him or the homecoming when he returned. His next reunion with mom would not be until he left this earth. Yes, this was a hard move for an old man who had the world by the tail for the better part of 88 years!   

And Dad was just not in a good place. I know now that it wouldn’t have mattered what I did or how I did it, he just would not have gone down this path without kicking and screaming. I expected the kicking and screaming knowing dad. I didn’t expect to watch him suffer so emotionally. Watching while trying unsuccessfully to help him break free of it took a huge toll on me. He was clearly depressed, but it didn’t seem to matter what I did, he just couldn’t snap out of it. (more on this later) But since this series is about the caretaker I want to talk about how his sadness took me down my own dark path.

It’s not uncommon. Watching someone you love suffer will affect you. These times were also good for me in ways I will always cherish. But just because I had my plate full with dad didn’t mean life would stop throwing other problems my way! It did and life became very complicated. Then one day—bam—I knew I was in trouble. It’s not a good sign when you just don’t want to get out of bed. I was feeling this incredibly heavy heart and a sadness that I couldn’t shake. I knew God was in this (more about that next post) and I knew I was doing the right thing, but I also could see I needed help. Knowing when you need to get outside yourself and get some help is healthy!

The first thing I did for my own mental health was admit my own weakness. Dad taught us to be strong. I’ve never considered myself strong, so why this need to be strong kicked in now is a mystery. J But I had this sense of responsibility to dad. Maybe because I could see how broken he was. But letting go of my need to fix the world for him and admitting to those around me that I was failing miserably, was freeing. By this time it was clear that something had to change. I asked two of my closest friends (I hope you know who you are!) and my small group for prayer, that God would give me strength to finish what I had started. Of course, that was the turning point. (We are not made to journey these passages alone!) It wasn’t that I wasn’t in prayer constantly myself, (and these were rich times spiritually) but for some reason I felt failure. And I did. Fail. Miserably. I still do. Daily. But I understand with new eyes now that God is strongest in our weakness. And so now, that’s where I stand. Right smack in the middle of my weakness. With my eyes up asking for strength!

After asking God for direction I decided to see a counselor to help me work through some of my own issues. I knew I was in a bad place and I knew if I didn’t come up for air I wasn’t going to be able to take care of dad well. I didn’t want that for dad, or for myself so I sought some help. Essentially I was in grief counseling. It never occurred to me that I was grieving too. Duh. (like I said, not the sharpest tool in the shed!) But just understanding that and walking through it with a mental health professional was key for me. I was able to sort through the conflicting emotions, the guilt and grief that I don’t think I really understood I was even feeling because of all the other issues clouding the view. It was just a really good decision for me. I felt better as soon as I started and it really helped me see that I did have the strength to finish this. It did not change dad, it changed me. But it helped me to care for him by giving me a way to process the grief so I could then be there for my dad in his. 

Another thing that really helped was the Alzheimer’s Association. Most people, if they live long enough, will develop some form of dementia. And there are resources out there to help you understand it. The support groups are very helpful. I attended only one, but it was eye opening. I wish I could have gone to more and may do so in the future, but this organization is a huge resource for those dealing with this aspect of elder care. They have classes and seminars and are just so very helpful as you sort through all the issues that surround any form of dementia. Just understanding how to deal with someone who isn’t rational anymore—or even learning to recognize it—was worth the time.

Looking back, I would have done so very much differently--but you just don’t get that option. Its uncharted territory everyone’s path is different. It’s like walking on a muddy path in a storm. You just wade through the muck and hope your feet find some solid ground now and then. It’s slippery and you’re not sure where the path is. You think you have to keep moving or you will get stuck in the muck and lose any momentum you may have had. Dad was stuck and couldn’t/wouldn’t move forward. He needed me to help him. Not to lead him. Not to push or pull him forward. He didn’t need me to do anything but just walk beside him. Like mom would have done. (Like so many did with me) He was and still is without her, but he needed to know that though he had to walk this path, he didn’t have to walk it alone.

This time with dad before he goes to see his maker and my mom has been sacred. I would go through the depression all over again to come out on this side of the pain. Getting the privilege of getting to know him in such a deep way has been priceless. Beneath the Alzheimer’s is, I believe, his basic personality and his truth. The good, the bad and the ugly. And knowing my dad, he’d love the reference to a Clint Eastwood movie because in those movies Clint is always such a tough guy. Dads a tough guy too. You don’t make it through all he’s been through if you aren’t. But all of us have a soft underbelly! For him I believe it was losing my mom. Having her at his side all those years was what gave him that strength. Because he'd always been so resilient I don't think I understood the depth of that loss. How do you get over that?  I don’t think you ever do. But thankfully, we have moved forward enough that the worst of the storm has past. We still have the occasional rain shower, but the path is less treacherous. It still leads to the same place, but I hope that by doing a good job of caretaking my dad knows he’s not walking it alone. 

The lesson for me here has been that grief is a process. It takes time. But there is help. It comes in many forms, but there is help if you can admit you need it. Another lesson is that depression skews your view. Life becomes a dark empty mess. It makes people withdraw from others and them from you! No one wants to be around a perpetually depressed person. I was really having a hard time being around dad! I'm sure others had a hard time being around me. And there is help for that as well. It may look different for others than it did for me, but the important thing is to get the help you need. 

And last, and maybe most important, we were not made to walk these passages alone. Seek support from others and from God. This was pivotal and next post I will touch on the spiritual side of this journey. Through it all both dad and I knew we were never really alone! 

Who Takes Care of the Caretaker-Pt. 3

 So today I want to talk about how I found rest. Last week I shared some of the stressful feelings and situations I had but I didn't share how I learned to handle them. Caretaking can be overwhelming. I had a friend one time tell me it could "suck the life out of you if you let it". And she was right. You might think you can compare it to raising children, but it's nothing like that. Instead of watching a child grow up and out of your care, you are watching someone diminish. That's the mental piece that really wore on me. (Note: not all of caretaking is negative! I promise to share the positives too!)

In the beginning I was relying solely on family for relief because it was easy. He thought they were just coming to see him, not to be cared for. It was a cop out on my part. The easy way out. Unfortunately, they all have lives and I realized I was the one who signed up for this, not them, and that it wasn't fair to expect them to help me. That's when I tried to go it on my own. Big mistake. You just cant spend that much time with someone without them getting on your nerves, not to mention the other issues involved. I also realized I was resentful and angry and had no one to blame by myself. I was in a bad place and that it wasn't fair to dad. I made the decision to put him in the best place we could find so I didn't take it out on him and those around me or find a way to change my attitude.

We toured quite a few places and he was devastated after each one. He would become quiet and sad and I felt such guilt. There was just no way to do this without sadness. I honestly believe that while he may have adjusted, given the spiral down I'd seen after moms death, I wasn't sure he'd ever snap back if we did this. I figured I would give it one last try at home, but I knew something would have to change. I saw that I had a better attitude when I had had time away, so I figured that I needed a little more of that. At first I felt guilty for needing a break. I guess in my ideal little world, everyone is always happy and you don't mind spending your life caring for someone else. But that's not the real world and I soon figured out I needed some time for myself. 

One of the biggest hurdles was that dad was adamant he didn't need to be "babysat". He would just pitch a fit, which is why family seemed the best option. Unfortunately, I needed more than they could give. I finally signed him up for a day care program once a week for three hours. That was a disaster. The patients there were not as highly functioning as dad and he pretty much became even more  depressed going there. I was sad just taking him there. This was not the place for someone who could still hold a conversation. Scratch that.

The woman there, understanding my issues, told me to call the Alzheimer's assoc. and look into a program they had. I did that and that program saved me. I kid you not. One day a week dad goes to the "Day Out Club" with others in early to mid stages of Alzheimer's. They play game to sharpen their minds, do art and music and have special speakers. He loved it and still loves it. I owe my sanity to that program and the women who staff it! One day a week I have four hours to myself. You'd be surprised the difference that can make. And with that one four hour time a week I was able to find some peace of mind and began to notice a change in both of our attitudes. He needed the break as much as I did! This single piece was the turning point for both of us. The Alzheimer's Association has helped me understand the disease, and deal with it and him in a way that still honors him. They have support groups and educational talks and much to read online that is helpful. I am really grateful for their presence and for the local group that has helped both of us manage our issues much better.

Around year three, I realized that my husband and I hadn't been out together in a long time. In fact, I'd bet we hadn't been out together even a dozen times in three years. My husband has never complained about having my dad. He has always been supportive and is actually better with him than I am sometimes. (yes, he's a saint!) But I started to sense that he felt restricted. Not him personally, but us as a couple. Which we both knew was a part of the deal, but it still gets old. I made the difficult decision that after all this time of giving in to dad's stubborn tantrums that he didn't need a "babysitter" I was going to get a "daddy sitter" and have regular times out with my husband. Oh, how that went over! And still to this day (it's been 6 months!) we have to have the "talk", where dad sits me down and tells me to cancel them because he's fine on his own. I then walk him over to the stove and show him the green enamel still left on the burner of the stove from the tea kettle he burned to it not too long ago. He of course can't remember that, but he still finds an argument and I just shrug my shoulders and tell him that's the way it has to be. Sometimes he pouts. Sometimes he gets angry. Most of the time he tries a different argument. But by the time they come he accepts it more or less and everyone they have ever sent has been engaging and he seems to enjoy them. And we have two nights a month to ourselves.

From the beginning we have taken him to church to his Sunday School every Sunday. His good friends there Larry and Liz (wonderful friends) take him with them to go out with a group for lunch each week. They are so good with him and understand his issues. I believe the interaction with people other than the family has been very good for dad. I realized you see, that having time apart wasn't just good for me, but for him as well. Sometimes, I've had to do things he didn't like for his own good.

So you see, finding respite was the key to keeping dad with me. The stress is real. Sometimes I dealt with it well and other times I didn't. But I think, no, I know, I didn't know my own limits. And even when I did, it took a while to figure out how to fix that. I am really fortunate that I have this support system in place now. Having  respite has helped me to care for him the way I want to, with a loving and kind spirit.  Not only did these tweaks help my attitude, it has greatly improved his!

Taking care of the caretaker is the best thing you can do for the well being of the person you are trying to care for! You are not being selfish to find respite for yourself. In reality, you are keeping yourself healthy enough emotionally and mentally to care for someone else. There are many resources out there for caretakers. Probably not enough, and you really have to hunt sometimes, but its worth looking for them. If I've learned anything it's that I can't do it alone!

Who Takes Care of the Caretaker-Part Two

This will be part of a series about taking care of yourself as caretaker by taking care of your body, mind and spirit. In the first post (view that here) I talked about taking care of your body with exercise to keep you healthy and relieve stress.  Stress is the number one enemy of the caretaker and will lead you on a path with all kinds of issues that will take you down physically or mentally if you don’t learn to manage it. Remember, you can’t take care of anyone if you are sick yourself.  This post overlaps both caring for the body and mind with rest.

Rest is necessary to the body and mind and keeps us functioning at our best.  I’m not going to talk about sleep, because I’m hoping that goes without saying. So what do I mean by rest if I don’t mean sleep?  I mean respite. I mean getting away. I mean relaxing and letting go of your responsibilities for a time. 

When I first brought dad home I felt this overwhelming sense of responsibility. It was my job to keep him safe now, what if I screwed up and something happened on my watch?? My siblings entrusted his care to me and I felt the weight of that and took it seriously. Maybe too seriously, you know? Stuff happens! But I was responsible for an adult, a parent whom I respected, loved and wanted the best for, but also one who could no longer make rational decisions. An aging parent who understood--and at the same time, sadly, didn’t understand. A parent who was desperately clinging to the tiny shreds of independence he still had. I know how hard all this was on me, but it was painful to watch how hard it was on him. I still had a duty, though, whether he liked it-or understood it! It was all for his own good, but that didn’t make things any easier.

That first year was the roughest. I remember the battles I had with him about walking the dog, among other things. I knew that walking was good for him, but he had gotten lost several times after he moved here and still he was determined to walk! Once, dressed in long pants and a sweatshirt, he left without my knowledge on a hot (I mean really hot and humid) July afternoon.  After driving around frantically looking for him, I was ready to call the police. I finally found him in another neighborhood in a state of dehydration, barely able to walk. I put him in the car, rushed him home and cooled him off.  “What were you thinking??” I asked--which looking back was a really stupid question. As I undressed him, cooled him with a cold cloth and gave him water-he replied that he believed Whiskers (his dog) would lead him home!!  This is only one example of the way his thinking is faulty and the battles we fought on several fronts because he doesn’t understand there is anything wrong.  I knew he was fighting for any independence he could still have, and all I wanted was for him to accept his fate and make it easy for me! He viewed me as the “warden” which he called me often (the Nazi, sheriff, shall I go on?) and was just pissed off at his me --his captor. I was frustrated and angry that he couldn’t see how hard this was for me and cut me a break!  These were not easy times. It was exhausting to say the least. (One of the wisest things anyone ever told me about dealing with Alzheimer’s was “you can’t reason with someone who can’t reason.” That changed everything for me. That’s a whole other post!)

I tell you all this to explain that this was all new to me.  I had no idea what I was doing or how to do it.  Or how hard it would be.   It is hard to care for someone whose mind is spotty and to learn to treat them with dignity, respect and honor while still keeping them safe. I didn’t do it well very often I’m afraid.  I seriously underestimated his dementia because he’s always been sharp and was pretty good at fooling us (and others who didn't spend enough time with him to figure it out) into believing he knew what he was doing. I know better now, which helps, but there was a very long learning curve for all of us.  And it really wore me out.  (dad-not so much-I swear arguing and outwitting me kept him going every day!) But any type of caretaking is going to take a toll. And that’s where rest comes in. 

My biggest mistake from the very beginning was trying to do it all myself.  I really underestimated the stress involved and what it would do to me-OR HOW MUCH A BRIEF REST WOULD HELP KEEP THINGS IN PERSPECTIVE.  I have support from family and both brothers have taken dad for a week so we could go on vacation (thanks Bro’s!) and my sister takes him one day a week to lunch and a movie sometimes or to dinner, which is more that some folks get. (Thanks Sis!) But live in caretaking is 24/7, 365 and I needed more "rest" --but didn't know it. I finally got so burnt out I felt that if I didn’t get some time off I would have to find a home for him.  None of us wanted to do that.  Just getting him out of his house and into mine was traumatic-Lord help us when we tried to do that!! And there were other stress factors that played into things as well. It’s not like life stops and says “hey, you’ve got enough on your plate-you’re going to get a break here”. Nope, when it rains it pours. And it did.

In the effort to keep these short enough to read without a cup of coffee and a comfortable chair--I’m going to wind it up here and share the "rest" next week. What I will say now is that caretaking in any form is stressful and you need a break at times to keep you healthy so you can care for others. You are probably at a time in your life when other stuff is happening too.  You may be and adult child in the “sandwich” phase of life where you have teens still at home and aging parents to care for.  You may be empty nesters thinking this should be a time of rest for you, but instead you find yourself parenting your parents. You may be experiencing the health issues that happen after 50 and are battling to stay healthy and care for unhealthy parents.  You may be a spouse who never saw this coming and who grieves the life you once had and wonder how you can manage to care for your spouse at your advanced age. Maybe you are caring for someone who has cancer or an ill child. Your loved one may be at home with you, or in a home.  They may have their mind and not their health, or their health and not their mind. Or they may have neither. From all the caretakers I talk to and all the stories I hear, the particulars don’t matter. Every situation is different except for the common thread of stress. While some may think I’ve had it rough, I can point you to others who’ve had it worse. Or better. That’s not the point. The point is that we need to take care of ourselves so that we can give our parent/spouse /loved one the best we have to give. Isn’t that why we are doing this?  To provide the best possible care for our loved one. To do that you need to take care of yourself!!  Next week I will share the solutions I found but in the meantime, if you are feeling overwhelmed or depleted, ask yourself “when was the last time I had any time away?” Only you can answer how much is enough, but from my small surveys, most people are not getting enough respite. I know it's hard to do, but I think it’s the most important thing I’ve done for myself as a caretaker.

If you took the time to read this, I hope it helps you or someone you know. Until next time, if you are a caretaker, are you getting any "rest"?  

Who Takes Care of the Caretaker?

Who takes care of the caretaker? You do. You are the best person to make sure you are taken care of. You are really the only one who knows what you need. They say you can't take good care of anyone if you don't take care of yourself. Since I've been caretaking my health has taken some hits. As a woman, which is all I can speak to, we just power through anything that doesn't absolutely sideline you (usually that's called motherhood) because there are people who depend on you. Until you can't. And that's what "they" are talking about. When you are sidelined. Then who takes care of the people who are depending on you? 

I'm going to break this post down into several because I've learned that taking care of yourself takes a holistic approach.  In this post I want to talk about taking care of yourself with exercise. Now wait! Before you click away, hear me out. I'm not going to suggest you start running marathons or anything. What I am going to tell you is why I know it works and why as a caretaker it might make sense to explore the idea.

I know it works because I saw it modeled in my dad. Dad always took care of himself physically. Maybe it was his disciplined military training, but he always kept himself fit.  So the models I had were mom and dad. Mom was pretty good, but was inconsistent and really battled her weight. What I saw with mom was a struggle that came from inconsistency and lack of discipline. (And that's me)  What I saw with dad was a lifestyle that kept things in check. I am 100% sure-because I've done a lot of research-that physical exercise kept his mind sharper, longer, than it would have been otherwise. Dad ran every day of the work week and did "calisthenics" when I was growing up. When he could no longer run due to his knee, he walked four miles daily and did his calisthenics.  When he could no longer take long walks in his 80's, he took shorter ones with his dog.  He just did it. And kept doing it. So when I saw research that said that physical exercise kept all those neuro pathways healthy--I was sold!!  Now that he can't walk very far anymore, I make sure he does chair exercises or rides his recumbent bike. Because I know that helps his mind! Now if that worked for him, it can work for me-and you! So our lifestyle can not only affect our health as we ourselves age, it can keep our minds sharper longer as well. If you have Alzheimer's in your family, it's something to consider.   

But exercise is also a proven stress reliever. And if you are caretaking in any form you have stress.  Managing the stress was something I wasn't doing very well. I've always tried to take care of myself. To me, that looks like keeping my weight manageable, eating healthy and moderate exercise. But I'm not like dad. I'm not very self disciplined. I do better with accountability and sociability! And caretaking really limits those options. So when my friend suggested I try a spinning class at the gym up the street, only five minutes away, I thought "why not"?  Thought. I. Would. DIE...but I went back. (Glutton for punishment I guess!) Amazingly, all those people in that class made it all the way through class with a sheen of sweat and a smile at the end! I can do this, I can do this! And pretty soon I was! There were times when I would be maxed out by stress and I would get on that bike and just pedal for all I was worth-and come out feeling so much better. What I learned was that I not only handled the stress better, but I got out of the house, I did something just for me, and I felt better as the months went by. I was learning to take care of the caretaker! 

I've kept that up for three years now. Pretty proud of myself since I'm not a hard core workout person. No crossfit for this girl! Too old, never going to win any marathons. But I did notice that I could burn off some of the negative energy in those classes and that my overall endurance began to improve. In-home caretaking can be isolating, so the social aspect was good for me too. And I was happier, because I was doing something for me. Just me. Something that was ultimately going to be good for me. I've always done yoga but hadn't kept that up-so I added that in regularly as well. Yoga really helps with stress and gives you flexibility and tones your muscles. I lift some light weights as well.  I kept walking on the days I didn't spin and, like dad, I just do it. (Or like Nike) I've realized exercise is not a luxury. It's a necessity. What if you don't have time?  You have to prioritize time for yourself. I'm pretty sure you can find a half an hour somewhere in your day to take a walk. It really is just that simple. A body in motion, stays in motion.  

The moral of the story is that while exercise is good for my mind and relieves stress, I was doing something for ME. When you are a caretaker you are giving of yourself all day long. You need to remember to give to yourself as well. Do good things for yourself. Because I know from experience, if you don't take care of yourself you really can't take good care of anyone else. 

The Doubt and Guilt of Caretaking

As I sit to write another post I'm thinking that last blog was "it".  Yup, that's all I've got folks!!  I could just leave it at that and I've said enough. For me, this has all been a "God thing" and learning to lean on Him. So right now I kind of feel inadequate to go on. But I know what I've said has helped a few.  And it helps me to write it. So maybe if I babble on, my prayer is that someone else will find some comfort.  This is a post I've been thinking about for a long time. It has to do with guilt. Self imposed guilt and the guilt we take on from others who we feel judge us for our caretaking choices. (they may not understand and more often than not have our best interest at heart)

"Life is like a box of chocolates. You never know what you're gunna get"-- Forest Gump. You know--walk a mile in my shoes and all that wise stuff!  In the circles I run in now I am surrounded by lots of elderly couples whose spouses have Alzheimer's.  Many Alzheimer's patients get violent or wander around getting into things in the middle of the night or forget where the bathroom is in the house they've lived in for half a century and have accidents on the floor. Stuff like that. It's hard. One sweet woman in particular who I have come to know just had to put her beloved husband in a memory care unit. With no family close by she was "it" - his only source of care besides "Day Out" (our Alzheimer's program) one half day a week. These couples are my heroes!  But it had just become too much to handle. (We all have limits and reach them! I will blog about that in the future) There was so much sorrow in her heart over her decision.  It felt like a betrayal of her marriage vows to her husband. And he told her if she left him there he would'nt stay! You want to talk about guilt with a capital G!!  But I ask you, if you have reached a point where your loved one or you yourself are no longer safe physically, emotionally or mentally, what is the loving thing to do? In my opinion, she did the loving thing. 

When I took dad in there were many well meaning people who thought I was completely nuts.  Further into it, there were many who saw the toll they thought it was taking on me and strongly suggested this was not the right choice. For either of us. And I can see why they thought that. There are facilities that can care for the elderly and I could "get my life back".  Tempting to be sure. While I listened and really weighed their opinions, I knew they were wrong.  For me.  For my dad.  At this time. (I kept and continue to keep my options open) While I would not suggest in-home care--or discourage it--for anyone, I will say I didn't sense the same support for this choice that I might have had if I had chosen the other. But I've heard the same thing from those who made other choices. I'm not sure any decision is a win for anyone. There is a lot of loss here in this place and these times. And there are always sideline coaches who may mean well, but in "helping" may "help" keep us from finding peace with our decisions. What I will say about caring for my dad in my home it that it has given me valuable time with him that I will never regret. 

These decisions are never easy. What to do with a parent who should no longer live by themselves is a big deal. Often the parent can't make the decisions themselves and it is up to you to do that for them. That's a slippery slope if they are in denial about their situation or are going to fight you. Even if you have a compliant parent, how to handle that life change without them losing their dignity and pride is hard.  A move is a huge transition for anyone, let alone an elderly person.  There is no "right" answer across the board. You will go probably go through doubt and guilt before you make a decision--and after. Your choices and options are unique to your situation.  We made choices that we felt made the most sense at the time but more importantly, that were the most loving response to dad's situation.  We did the best we could do. And I'm sure you did or will too.

Just realize this: even in the best scenario's this is going to be gut wrenching. Stuff may and probably will happen that make you second guess your decision.  I know I did!  And it is really, really stressful for everyone involved.  So cut everyone a wide path. Further down that path it will smooth out a little. Take those times to enjoy your parent because we can't see too far down that road and you don't know what the future holds. You only have today.  "And that's all I have to say about that". --the great philosopher Forest Gump.

Trimming Trees and Caretaking

Before I get into some of the more practical aspects of caretaking, I want to tell you a little story.  Back many years ago when we lived in the suburbs of Chicago in the house and place I remember as some of the best times of my life--you know, those years where the kids are not teens yet and your parents are not too old yet? (and neither are you!) Those years.

I had a large yard and gardened like I did everything else in my life, full out and all the way.  I moved yards (10 or more) of compost each spring to the various garden beds and tended my flower and vegetable beds almost daily. It was glorious work. And that yard was a work of art.  What I love about the garden is that it is new each year. I created new vignettes every year in the ever evolving landscape. And like the garden, those years we some of the best for me.  Relatively problem free and we were just really in a good place there.

One day while the older kids were at school and the youngest was napping, I decided to trim a tree branch that had been bugging me for a while. There was this one low branch that just needed to be trimmed off.  So I dragged out the step ladder and a hand saw and set about the task. I set the ladder up under the offending branch and stepped up with saw in hand. The ladder was a little old and wobbly, but not too bad. I climbed a few steps further up that unsteady ladder to the last step. Reaching the limb, I took hold of it and began to saw. With each pull of the saw the little ladder rocked.  I think you know where this is going.

Now I'm not always the sharpest tool in the shed. I lead with my heart and I will never be remembered for my incredible intellect. It's ok. I've accepted that.  I have other strengths. It takes all kinds and while we always want what we don't have, part of life is playing to the strengths you've been given. I've always felt I had good common sense though, but where it was that day, I'm not sure.

It wasn't a thick branch, maybe an inch and a half or two. I'm almost through it when don't you know--(of course you do!) the ladder rocks just a little too far with that last pull of the saw and then-being the ever resourceful woman that I am-I grab a branch and hang on as the ladder gives way beneath me and tips over on the ground. Only the branch I grabbed is the very one-you guessed it-that I am trimming and have almost cut through. Well, you get the picture. I'm hanging there for a brief few seconds, holding a saw in one hand and clinging to a branch that threatens to finish ripping from the tree from my weight with the other. There for that brief second I didn't realize how badly this would end. Until it did. Ouch. I didn't just hit the ground, I fell on top of the ladder.  I'm pretty sure that's when I permanently injured my hip. (I hear you laughing and it's ok! Humor and being able to laugh at life and myself is one of my strengths. I’ve also had a lot of practice!)

At first I was stunned. I just laid there in a heap, unable to move from the pain.  I thought I might throw up. I rolled off the ladder and remember thinking "Gosh, I hope no one saw that!" Not one of my finer moments. I must have been in shock but I remember wondering if I was going to have to crawl in the house and call 911 or perhaps just perish in the front yard from my own stupidity.  A few minutes into the incredible pain, I remember thinking about my sleeping son in the house.  I couldn't just lay out here indefinitely. And I think I honestly almost passed out. Painfully I made it to my hands and knees and began to crawl to the front door. Once inside, I laid on the floor until I could lift my head without feeling like I was going to hurl.  Eventually, the nausea passed and I was able to stand and limp to the couch. My son woke and I remember thinking I should see a doctor, but I don't think I ever did. I do vividly remember a bruise that covered my entire hip and a sore hip for a really long time. (I really don't think I went to the doctor because it was so stupid and I didn't want to explain what happened!!) That hip has problems to this day.

I may lose a few with the spiritual side of my story, but I hope not because it is in these lessons that I have found real peace and the sacred side of caring for dad. I promise not to get all preachy every post or tell you lofty things that sound really spiritual!!  That's not who I am. Trust me. But I have always had this side to me. If you're coming from my other blog you already know I tell you this story because I love a good metaphor. Caretaking, or any trial in life, can look a lot like this story. We see an issue (the branch/dad's situation), we think it's a relatively easy job and we know what to do (trim it/caretaking), and we go about it by bringing out our tools to fix it.  We don't really ask God about it.  It looks pretty straight forward. Even simple. I've got this!  Ah, there's the trouble.  As I've said, I've done caretaking all wrong.  Usually with the same results as the tree trimming story. What I've learned, on some days but certainly not all, is that when I try to drag out my own resources to do a job without making sure they are going to be stable and on solid ground, I'm in trouble. God is the solid ground. He can help you trim the tree if He calls you to do it, but you'd better be sure you borrow his tools and don't try to rely on yours.  Yours are not going to cut it. Or like my story, they'll cut it but you'll be hanging by the branch you almost cut through before your ladder falls over!!

There are a lot of issues that come into play when caring for an elderly person. You are responsible for that person's well being and that's not a small thing.  So whether it's as simple as holding my tongue so I don't bruise his spirit or something larger like rushing to the doctor in an emergency, my first order of business should be asking the man upstairs for the right tools. I say this with all sincerity and knowing that twenty minutes after I post this I will be hanging from a partially sawn limb!!  But I knew better when I climbed that ladder and it wobbled. I should have stopped then. And I didn't. (slow learner?) I am smart enough not to repeat things that have the potential to HURT BAD! Pain is not easily forgotten, so it too has a purpose. And I have learned much through this thing called caretaking. I have had and caused some pain. Luckily, I don't repeat the same stupid thing twice.  Ok, maybe I do, but I'm working on it!

We aren't called to do life or it's problems on our own. Matt. 11:28-30 says:  Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light".  So the key word here is "come". He doesn't say "come to me all polished up and smelling good". He just say's "come". He doesn't say "come to me when you get it figured out and I will bless it".  No, there are no conditions to it. Just come. Come before, during or after you've screwed it up. He's always there, whenever you figure out you need His help. All we have to do is come! It's that simple.

When I finally began to come, things slowly began to change. I know He redeems my impulsivity and good intentions. But it's a lot less work to just wait for Him to bring you a ladder and place it on solid ground! The trick  for me is not to just throw up this little prayer asking God to bless what I think needs to be done, but instead to ask Him for the wisdom to know what really needs to be done and for His strength to do it. The job may still be difficult but the right tools can save us a lot of time, trouble, exertion and pain!

As I said in my first post, I've learned a lot about myself during this process. Most of what I'm learning about myself are my limits. The last 6 years have been some of the hardest, yes. But also some of the richest in terms of finding God and myself in the process. This is the overriding lesson: I have limits. God has none. Why would I not come?