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!