To caregivers everywhere consider this:

• What you think will happen may be all in the mind, and I am not referring about the person you are caring for; I’m talking about you, the care giver. Just because you get a comment of “I need to talk to you about something”, does not mean the conversation will be one of the usual conflict and argument.
  • My mother called me early this morning with the above statement. I admit, I did not want to talk to her, as I thought it was going to be about what was scheduled to happen tomorrow, which was having  an MRI and other tests. Prior to today she said many times she did not want to have the test, while other times she was okay with it. But this morning, I thought she wanted to talk to me about backing out of the appointment. Rather that taking care of it then, I postponed it, telling her I would talk to her about it later today.
  • I spent the day thinking of endless scenarios of how the conversation would go, and how I would answer each one. What happened was none of the above. When the time came for us to talk, she said she was concerned if we had the right papers, and that the test had been approved by the insurance company. I assured her that I had called the hospital, and while there were issues, the corrections were made, which changed the appointment time, but all was in their computer and we were set for the appointment. As a result, she appreciated knowing “I was on top of things” and she would be ready tomorrow to meet me at the time I requested her to come to the car so we could go.
  • The conversation took a short ten minutes, and it resolved a couple of things. I think we were both relieved: me giving her information she did not have, and me for not using any of my responses I stored in my brain for possible scenarios that did not come into reality. For me, time I used for that today was time not spent properly. Which brings me to the next point:
• Take things a step at a time and don’t think so much; your loved one is already doing that, so don’t follow suit. For caregivers, this is an area where stress can build, sleep is lost, and the ‘what-ifs’ can be endless. And for what? For something that has the possibility of  never becoming reality. One last point:
• I learned I need to handle situations rather that putting them off. Delay did not help neither of us in this situation. My mother probably thought all day of what I would say, and I thought all day of what to say and what may happen. If I had taken the time to see her (though it would have made me late for church) the issue would have been resolved much earlier.

Live and learn, and in this case it is learning how not to think too much. Hope you do the same.

It is interesting how difficulty can bring strength to the inner core. The discovery of aha moments in the most challenging of situations brings hope to the surface, enabling one to continue trying, even if the light at the end of the tunnel can’t be seen. But there are things that can be acknowledged:

Know who you are in God. Know that in Him you live, move and have your being. He knows your thoughts afar off, even before you formulate the thoughts of fear, despair, and frustration, all rolled into living the life of being a caregiver:

• The long discussions one has with their loved one, familiar conversations you know you have had with him/her before, but ones that your loved one clearly does not remember, and says “I did not know”, or “I was not aware”. This happened recently with my mother. After talking for over ninety minutes, the familiar adversary of frustration crept into my emotion, and while we did not argue, I left feeling there was not much accomplished by the going back and forth, wondering what else I could have said that could have not only made her understand, but could have eliminated the underlying current of distrust of me and others who are trying to help.
• After our conversation, I felt so heavy. I didn’t say enough, I didn’t present the right sentences, I wasn’t successful. I left her place and came to mine, not long thereafter going to bed, sitting in darkness and crying out to God about what to do next. At the same time, I did not want to complain and rehash what just happened.

Instead, I determined to just honor God by saying affirming statements like “I trust you have me God”, “you said nothing is impossible”, “I am victorious”. And then the prayer shifted more. I said I wanted what He wanted, and my request was for His involvement in all of this and other situations and concerns. I told God that I want to know what he wanted, that I wanted Him to be “in”. IN everything I do, IN everything I am involved with, I wanted him involved. I remember saying that night in the darkness, “God, I want you in.” And just like that, God’s presence entered the room, and worship broke out.

That encounter enabled me to get to sleep. It caused the heaviness to dissipate. I can’t tell you that when I woke up the next morning I felt like the heaviness was completely gone, because it wasn’t. But I can tell you that God-encounter cause me to continue on living life, fueling me to get out of bed, get ready for work, and once at work to get things done. By the time I got home, and after doing some exercising and eating dinner, I felt better and yes, I felt lighter mentally, as I continued to make affirming statements that included “this too shall pass”.

• Friends are important as you are experiencing challenges. God has provided me with a support system of friends who went through the same things I am presently going through with my mother, and they encouraged me by presenting a different angle to the situation I had not considered. So I encourage you to get much needed wisdom from those who have been where you presently are; learn from them. They can be a big help.

“We can be tired, weary and emotionally distraught, but after spending time alone with God, we find that He injects into our bodies energy, power and strength.”   Charles Stanley

Therein is where the experience of growth pains from challenging situations causes strength to become stronger deep within one’s very being.

It’s been a while since writing in the blog.  Here’s an update:

Mom has been doing better. I went to see my son who was recovering from an injury that had him in the hospital. During my time away, I called her to see how she was doing, and we had a long discussion on scheduled doctor visits, getting an MRI of her head, and just how she feels she is doing. She admitted some things that I was happy to hear from her. Without going into detail of that conversation, I wanted to encourage caregivers to leave the door of communication open at all times. One never knows when you will have an intimate conversation that will enable you to really hear what is going on in their minds. It may be good thoughts and/or ones that aren’t so good (depending on how clear-headed they are at the time), but at least you will know what your loved one is thinking.

The line of communication includes the one talking and the one listening. If you are on the listening end, it helps to let the one on the other side of the line to talk, get things off their chest. And if you can, offer suggestions that could encourage them and lift them up. During my conversation with my mother, I was pleasantly surprised to hear what she had to say regarding how she was reacting and not reacting to everyday living, and there were some things she had to accept as she gets older. That conversation was a good one that helped both of us view (as best we could) the whole picture.

But there is another line of communication that is available, and that is having a talk with God. As caregivers we tend to make the attempt to handle everything on our own, which tires us out in the process. God encourages us to cast our cares upon him, as he cares for us. He always offers and leaves the line of communication open whenever we need to get some things off our chest. Take him up on his offer, and give him a call and communicate with him. He is always available.

This Easter weekend has been a good one: Friday I took the day off from work, went to the hair salon, leaving there with just enough time to find a great parking space and walk into a church service moments before it began. The service was amazing, and I thanked God for allowing me to attend. It was nice not to have any phone calls or messages from anyone, and enjoy a peaceful evening.

(I have to say something  here before continuing. I realized how negative my reactions have been towards my mother, mainly being frustrated, which was visibly shown on my face and in the tone of my voice. My mother noticed it and didn’t hesitate to tell me, but I already knew. I asked God for help in this area.)

Saturday was met with sleeping in for a change, getting exercising done, and making plans to run errands and get shopping done. For the most part I stuck to what I had on the list (with a few unplanned purchases at a store I should not have been in), but got everything and got home. But before I left, I stared at the phone. Should I call her to see if she needs anything at the store, I thought. Part of me wanted to answer that question with a resounding NO! You have planned an evening of cooking an Easter meal and do some baking while watching the  Villanova basketball game. I decided to call her…

She told me to do what I wanted to do and while I was out she  would make a list. Somewhere in that conversation she though that meant she was going to the store to shop, while I was thinking I was going to the store to get the items for her. When she called she told me she was on her way out to meet me. For what? I said. the conversation continued, and frustration entered the conversation like an old friend, ready to wreak havoc. We met and left at 6pm to go the bank first then to the store, where she spend the evening going to each aisle to make sure she got everything, which takes time. My evening of cooking was not going to happen. As I waited for her to come to the car something happened to me, something different:

Surfing the ‘net I found an article about a young woman named Lizzie (Elizabeth Wolf) who left where she was living in another city, moving with her husband back into her childhood home to be a full-time caregiver for her parents. Two parents. Like me, she noticed things they were doing that wasn’t right, like calling and singing happy birthday to her when it wasn’t her birthday. People at her mother’s job noticed she would just stare out the window. The more of the article I read the more reflective I became. I identified with (though she was married and her husband was with her) her experiencing loneliness. She missed her life of doing things and being with others. The constant asking of the same questions I could identify with as well.  Her parents’ struggles with dementia became her struggle, feeling like their parent in the process.

But here is the kicker that really got me thinking: she has been a caregiver since 2010, the year both parents got diagnosed. Six years of losing sleep and wishing she had more. Six years of wanting to get away and enjoy life but couldn’t. Six years of making decisions on their behalf. Six years of helping her mother bathe, teaching her how to sleep again, wrapping her leg around her mother as a way of keeping her steady, and on and on.  Soon to be six years. ..and I’m belly aching over the past 5 months. Whew! I felt like a spoiled brat. I more fully understood what a friend of mine meant when she said to me “you’ve got to suck it up.” I got teary eyed as I thought about Lizzie, and prayed for her as I asked God to give her strength but to forgive me for the way I had been acting, sometimes justified, other times not.

Here’s another thought: throughout this reflective time I realized God is with me, despite how I feel and act. His faithfulness remains steadfast regardless. For that, I am grateful. Great is Your faithfulness. Thanks be to God for your greatness.

Note: Follow Elizabeth Grace Wolf’s blog: upsidedowndaughter.com

Thursday evening as I was with my neighbor who assisted in getting my mother off the floor, he told me in my mother’s eyes I am her everything. Here’s the problem with that thought process:

No one should be thought of as one’s everything.

Yes, I am her caregiver. Yes, I try to help as much as possible. But there comes a moment in time when there is just so much I can do…and can’t do. Here’s something else:

Caregivers must know their limitations.

To caregivers everywhere, as we have begun a new year, let the remaining 364 days of this year be filled with the knowledge that we are human like everyone else. We are not superhuman, though I am sure we try. Be continually cognizant of the fact that we must take care of ourselves. We can’t be much to those we care for if we are sick. Finally,

You are not your loved one’s savior.

If you were you would be God. Newsflash: You are not. But to the believer, there is One who is; and it is  not you, so take the pressure off yourself. Know that you are not someone’s everything, be aware of what you can and cannot do, and you are not savior. But you are encouraged that God can be your everything, as you continue in the everyday goings on of caring for others.

Hope this helps…

One evening before I went to sleep I read some scripture, something to be a type of a launching pad for the new year. When I opened the bible wanting to read from Psalms it turned to Psalm 20. Here is part of what it says (NIV):

May the Lord answer you when you are in distress; may the name of the God of Jacob protect you. May he send you help from the sanctuary and grant you support from Zion. May he remember all your sacrifices  and accept your burnt offerings. May he give you the desire of your heart and make all your plans succeed.  May we shout for joy over your victory and lift up our banners in the name of our God. May the Lord grant all your requests. Psalm 20: 1-5

Then I read Psalm 16, and here in part is what that says:

Keep me safe, my God, for in you I take refuge. I say to the Lord, “You are my Lord;
apart from you I have no good thing.” I will praise the Lord, who counsels me;
even at night my heart instructs me.  I keep my eyes always on the Lord.
With him at my right hand, I will not be shaken. Therefore my heart is glad and my tongue rejoices; my body also will rest secure,  because you will not abandon me to the realm of the dead, nor will you let your faithful one see decay. You make known to me the path of life;
you will fill me with joy in your presence, with eternal pleasures at your right hand.                 Psalm 16: 1,2,7-10

Before the new year was born, there were a few hours of the previous year to experience. For one, earlier this week, I felt like something was going to occur, and not a good thing. Because of that vibe I was feeling, I believed something was to happen to my mother. For a while things had been going well for her physically and mentally. She arranged to get a ride to church on Sundays which freed up that day for me. The medical persons that came to her home was working out, and when needed I would take her to the doctor for her checkups. And then…

I wrote earlier this week about her falling, us having an argument, and later her calling me as though nothing had happened between us. Yesterday she fell again. She called me saying she needed help with getting up from the table, which was a lie, for when I got to her apartment, she was in the floor again and wanted me to come and help her up. Frustration (which seemed to be my close but unwelcomed friend lately) came out through my voice and facial expression. The more I tried to help, the more she instructed me to do this and that, and nothing was working. I told her I would go get the neighbor to help us, to which she replied “we can do this”. I replied we could not and I was going to get help. She said she did not want anyone here and she would lock the door. At this point, I told her I still have the key and she can’t get to the door and I left.

Once the neighbor came again like before, it took only seconds to get her up and to the walker and the neighbor assisted with getting her to the chair in her bedroom, and he left. Not much by words were exchanged between us. I moved some things around like the phone so she could be closer to them.  She wanted something to eat, which I volunteered to do for her so she could sit and at least attempt to relax, but that would be too much like normal: she had to do it.  I got my coat and left with her saying she would not bother me today so I could get some rest.

After talking to some friends who said they would pray for me, the tears came. In part happy that I do have a support system that comes to my aid when I need a shoulder to cry on, and tears of frustration, knowing I need to make more decisions:

• Do I choose Adult day care or having someone come to my mother’s home on a daily basis?
• I need to free up as much finances as possible as this will be another cost, and I know I have to discuss this with her, and if she doesn’t want to pay a monthly fee for an emergency, she will also think adult day care will be a waste of money.

I remember being at a crossroads before, but God sustained me. The above two passages of scripture are so appropriate for a new year and this present situation. As these two psalms are full of promises and hope, I extend the same to all who read this blog. Happy new year to all, and thanks be to God who extends himself through words that cultivate into promises for us, caregivers and anyone who needs hope…

What do you think of when the word community comes to mind? It may be when you were a child and played basketball  in the neighborhood community building. It involved others, playing , laughing, having fun. Or it may involve caring for others, like feeding the homeless, or giving their children clothes. In either event, it involves others. What if the community was one, your loved one?

Community involves coming out of yourself, with the emphasis of concerns of another. It is through this involvement I believe you learn some things, not so much about the other person, but about yourself, like I did today.

For a change I was having a productive day at work, and enjoying having lunch with good friend and coworker, Cheryl, when I got a phone call. It was my mother.  I froze staring at the phone with my mind going a zillion miles a second fearing what I would words I would hear on the other end of the phone line. “Sorry to bother you, but I could use some help. I fell again…”

While she sounded fine, my mind continued to spin. I told her to call 911, she said no. Later, when Cheryl and I left the restaurant, she asked me if my mother was going to call 911. My response: “no, she’s not calling 911. And why wouldn’t she? I am 911!”

It was a joke that we both laughed at, but there was a ring of truth in it, and I think all caregivers to some degree would agree with the statement. We got back to the office, I made some calls, emailed my manager that I had to leave, and I lit up the highways and the bridge to get home as soon as I could (live in one state but work in another), not knowing what I would find. I got to her apartment and (long story short) found a man who worked at the complex who was gracious enough to get her off the floor and into a chair. That only took less than six seconds. We thanked him profusely, he got his tools and left. My mother said now that she was sitting in the chair and off the floor, “you can go back to work now if you want.”  W–h–a–a–t–t–t~~??? I told her I would not be doing that.

Eventually, the conversation got into why didn’t she just call 911. Answer: there would be a cost. Next was conversation of having a service like AlertOne, those things worn around the neck that she could push the button and get the help she needed. Answer: the cost, not only for the service but also to pay the police for taking the call. Then I said “and what would you do if I was out of town?” Answer: “then I would have no choice, I would have to call 911.” As these type of conversations usually go, we got into an argument, with me saying what Cheryl and I joked about in the car, only this time there was no laughter; neither of us were happy with the road this conversation was going. “Well, you don’t have to worry, I won’t bother you anymore. Now I know where you stand.” And where do I stand?

I stand at that moment in time as one who is truly trying to do the right thing here. I stand trying to gather what is left of my frazzled emotions, trying to ignore the throbbing pain of my head that I have had since this morning that still hurts, after taking three Advil pills this morning. I stand being one who is frustrated and just worn out, but still trying to continue being a caregiver. Having done all, I just want to stand…

I quickly gathered my things. we said some not-too-good curt sentences to each other and I left and went four doors down to my apartment, upon entering throwing my jacket and keys on the couch, and with all the strength I had in me slammed as hard as I could my door. As I sat down (with the pain in my head thinking it not robbery to enlist my neck in joining in the pain party), the word of community of one came in my head. I didn’t know why, and frankly didn’t want to explore it, but did anyway.

Community is where there is caring coupled with disagreements, but nevertheless you stand. Community is where the focus is not on self but on others. Community is where you find answers of making things work, and in the process get a crash course of how to deal with others’ personalities as you discover some things about yourself. Patience is key, but I have to admit, this not so easy process makes me want to yell out a loud Charlie Brown AHHHGGGGHHHH, though.

Addendum: About a couple of hours later, my mother called to talk about her medicine, like nothing happened earlier…

On the show Project Runway, fashion consultant Tim Gunn is always saying to the fashion designers “make it work”. It is also the mantra of every caregiver on the planet.

Whether caring for children or parents or anyone for that matter, the ones that give care are mentally saying to themselves, make it work. We lose sleep mentally trying to devise a plan of doing this so that can get done, coming home early (as I did today) and not telling anyone you are there so you can have some quiet time to just sit and be quiet and try not to think about what else needs to get done.  We use our break times at work to make phone calls, run errands during lunchtime (mine was going to the post office to pick up stamps for my mother), and actually enjoying the ride home from work because of leaving work early and beating the traffic crunch.

And so I have a question for you: How is your “making it work” plan working for you? The designers on Project Runway oftentimes have to rethink their design, particularly when Tim puts his hand to his face and exhibits that concerned look that is silently saying “I think you may want to rethink this one”. The same holds true for the caregiver. Wanting to do the right thing but not sure how to go about it. But here’s the main thing about it all. Through no fault of their own, caregivers are very busy people, not so much because of their own life, but for the live(s) of the one(s) they are caring for. Because so much time is placed on that person, there is little time for the caregiver to care for self. This has the potential for a myriad of problems, from depression, to lack of focus, loss of sleep, and health concerns. As my mother has told me “you can’t keep going at the pace you’re going. I don’t want you to get sick.” She has a point, and I know her concern is an appropriate one.

But caregivers also don’t want to impose on others, and so they keep going at what appears to be a breakneck pace to get everything done. What happens when it doesn’t get done? We have to acknowledge some things:

• You are only one person. Sorry to have to tell you this, but you are not perfect either. There are days all is going great, and there will be many times it seems like all is going wrong. Please do not fault yourself. If anything, perhaps this is something you need to do:
• Learn to say no to things. Does it have to get done now? I was this week just getting into a good flow at work, and feeling good about it, when my mother reminded me she needed to be taken to the doctor this week. I told her the appointment would need to be rescheduled. The good news was she was okay with it, and I was successful in getting the date I wanted.
• Make the time to be alone with yourself. Schedule it and stick to it. Unless there is an emergency don’t reschedule quiet time. Make it a daily habit.
  • Not a monthly…and not a weekly, but a daily habit. Take time for you. Give yourself some priority.

There are times I write when I’m in the moment, and this post is being written during  one of those times.  I decided since my mother was not driving and knowing she wanted to be at church, I asked her earlier today if she wanted to go, and it was agreed I would take her. Even though I had been up since 3am this morning, I decided to sacrifice a quiet evening and take her to church. The church service was nice, and those that were there were happy to see her familiar face.  I am usually in bed between 9 and 9:30, and I knew I needed to be in bed no later than 9:45. But my mother wanted to pick up something to eat on the way home.  She waited in the car and it took for ever for her order to get done (actually it was about 20- 30 minutes), because she wanted it fixed in a certain way. When I finally got in the car, she wondered what took so long, “they must have a different cook,” and “this is not what I’m used to getting”, and let us not forget (when I told her how much it cost)”oh no, that’s not how much it usually costs.” These were the comments which made me feel not only more tired than I already was, but experiencing another ‘failure as a daughter’ moment. I must admit she did say she didn’t mean to have me wait so long, but by that time I guess the damage had been done.

This post really has nothing to do with being a caregiver, just with being a daughter. During the ride home I stayed quiet as I heard the crunch of her order as she was munching, and wishing I could taste what I ordered. Anyway,  the checkpoint is the following:

Whether a caregiver or just a son or daughter, there are times when all of us have to speak up, set boundaries, and just say no: this phrase from the Reagan era is not just for a stance for not taking drugs, it can apply to other situations, like “Mom, I’ve been up since 3am and I’m really tired. Since you just went to the grocery store yesterday, don’t you have something you could fix at home?” Oftentimes, being silent to keep from saying something in an angry tone is not enough. But saying no in an even tone is.

Let’s just say this is something that I need to   work on: checkpoint is speaking up in the right way, and not feeling guilty for doing so.

I feel better for letting my fingers do the talking tonight. But it’s 11:02pm and I need at least 5 hours of sleep. So goodnight for now.