Chorus: Everything is nothing, everything is never enough, without You. Everything is nothing, a little bit more will never measure up, gotta need  Your love…                                                                                      from the CD Chasing the Wind by KJ Scriven

The song describes what a man and a woman discover. The man, who tries to prove his worth by climbing the corporate ladder, realized there was “a whole down in his soul”. The woman thought she “found the one”, the one who would give her the love she was longing for. However, she realized he could not “fit the shoes that were made for God alone”.

For the majority of today this chorus of Scriven’s song kept replaying in my head. I felt as though God was trying to tell me something. But what was God’s point? I think I may know the answer.

God challenges us to cast our care upon Him, for Him to take care of, for Him to handle. The sixth chapter of Matthew also commends us not to be concerned (better yet worried) about what tomorrow brings; it will have worries of its own. Instead, seek first the kingdom and his righteousness and all these things shall be added.

Lately after visiting my mother, and noticing how her brain is mixing memories with events that either happened, or they are events her mind has made up, and believing it is real and has occurred. As I walk to my car, I have had to say out loud to myself “You can’t fix this.” At the same time, I attempt to come up with some type of strategy to get my mother to see what really is reality.

• I have tried to give her a list for her to refer to. Problem is, she doesn’t look at it.
• I come up with a plan to talk to her about things to get her to understand what is going on; that did not work.
• I try to offer solutions to her ‘reality’, it only makes things worse.

So today when I visited her I just listened, told her I would look into it, and when I could, I interjected a sentence or two as to what she should do. The problem with that is give it a few seconds and she is right back to saying the same thing, her unreal reality.

I left again,  walking to my car, telling myself the same thing: you can’t fix this.

So, getting back to the song, could it be what God is telling me to stop chasing the wind (the title of the song), and instead cast on Him, get Him more involved, and not worry? could it be that I should stop chasing the wind of what I perceive to be  answers to this situation? Could it be that I am so involved in my mother’s issues it messes with my getting rest, keeps me unfocused regarding what I need to do for myself, eating things I shouldn’t, in an attempt to release the internal pressure I have placed on myself? Like my mother, I may have developed some ‘reality issues’ of my own that don’t exist.

What does exist is there is a God who is still with me, full of the reality of His going to bat for me if I only relinquish what I can’t change. Like all caregivers who want the mind of their loved one suffering from dementia to return (yet knowing the disease has taken over), we must remind ourselves not to become God and solve everything, because everything we strive to do is never enough, without the involvement of God who is the Omniscient One. So, I will continue to remind myself to love my mother and do my best to care for her, and look to the hills from which cometh my help, which is from the Lord who made heaven, earth, my mother, and me. I gotta need His Love…to get me through this.

As my mother has been transported from the hospital to a skilled nursing facility, dementia continues to rear its ugly head. The latest is living in her dreams. She calls me during the evening wanting me to come and get her. She comes up with what at first I thought was just crazy thoughts, and I couldn’t figure them out: she told me she was with the funeral director, or at a friend’s house, all the while she was at the nursing facility. She called me begging me to get her, and when I told her she was at the facility, she said she would just walk home since I wasn’t going to help her.

The next day I told her what happened. When I described what she told me, first I noticed she didn’t even remember doing that. But she did remember the dream she had, and it matched what I described she had told me when she called begging me to bring her home(which was about 1am in the morning). We laughed it off, but at least I realized what was going on. When I got home, I did some research about dementia and vivid dreams, and then it made sense.

Learning Points…

For years my mother has told me she has had vivid dreams since she was a child, and the dreams seemed so real it was hard to “come out of them”.  When we lived together years ago, I would hear her talking in her sleep. I wanted to wake her, but didn’t. Eventually the talking and (what appeared to be) crying sounds would stop. Here we are years later.  From the research, there is a correlation between the elderly who have dementia and vivid dreams. Many cannot tell the difference between dreams and reality, particularly as they are ‘sundowning’, described as when the sun goes down those with dementia have a change of behavior, and not a positive one. When there is daylight, my mother for the most part is okay. I visited with her recently, and left her as she was eating her lunch, with her telling me she would take a nap after eating. Once I got home, it didn’t take long that afternoon for het to call me begging me to come and get her; I knew she had awakened from a dream and was living it. This dream was about her being at her friend’s home and everyone had left, and I needed to come and get her. My trying to tell her she is living what she just dreamed didn’t help. My telling her she was at the nursing facility didn’t help either. She believed she was at her friend’s house; her dream was presently her reality. At least I only got one phone call, and at least for that evening, I did not receive any other calls.

If there are caregivers who are experiencing this (and you want to get sleep), and your loved one is not living with you, I can only tell you what is working for me. I turn off my cell phone after 8pm. I allow any messages to go to voice mail after 8pm. I have talked to the staff at the nursing facility about what is going on. I typed a list about where my mother is, why she is there, and meals will be provided for her, and I gave that to her to read. This was done so she can refer to this when she gets confused. Once she starts her rehab  exercises, hopefully this will tire her out and she will sleep better.

Only time will tell, or perhaps I should say only the night will reveal what will happen…

Last year when my mother was in a rehab facility, her words changed to match her actions, which had turned to confusion, and putting me down. It was like her brain suddenly and surprisingly changed to that of being hurtful and hateful. At the time, I did not know what was going on, and did not know how to react, or what to say.

But that was last year.

A few days ago, my mother was falling a lot: twice on Monday and again the next day. When I got to her door and heard her yelling for help I found her on the floor. She was very much in pain. Eventually I called 911 who took her to the hospital. She was confused, asking me the same thing over and over and over,  and as the week continued on, she became agitated and combative, saying I set all this up to get her out of my life and take her money, and “God was going to get me for doing this”; the very same words she said last year. She also called me pitiful, and should have known I would do this to her. My brain immediately took me back to October 6th of last year, when she went verbally ballistic. But this time when she called me pitiful, I told her I was not, for God was with me and who can be against me. She said she did not want to hear that and started la-la-la singing. It got to the point I left, knowing she would soon be transported to the skilled nursing facility. After yelling at me and calling me names, I came home and she called me, pretty much asking me the same thing. This time it seemed a piece of her personality returned, and we could communicate a little better, though I kept answering the same questions over and over again. I had heard this familiar verbiage before, but this time my reaction was different, and in my opinion better.

Dementia came by for a visit, but this time I would not be weak, and I stood up to it.

To caregivers everywhere,

• Do not take what is being said to you personally. Friends who have experienced this with a their parents have told me that.
  • Here’s the reason: it is not them talking, but the dementia.
• Here’s something else they told me: Continue to love them, and care for them. If you have to get out of the situation, do it, which is what I did today. Both of us needed space, and I believe it helped.
• I know I did not “set up” anything: the medical staff set up where she was go next. I know I am doing all I can to help my mother. As long as you know that, you know you are doing right by your loved one.

This year God has been involved. I asked Him to intervene. When you give the invitation, it is not all on you. Casting your care to God allows you to be able to breathe, enabling you to continue on. I am concerned, of course, but I am not worried. There is such a difference between being worried and being concerned. Being concerned acknowledges there is a problem, but at the same time give it over to God and move on. Being worried means you take the whole load and attempt to solve the problem, losing sleep, getting headaches and other bodily pain in the process.

I invite you to invite Him in the process. You will see the difference, like I have.

Yesterday I drove my mother to her church for Sunday morning service.  Knowing from before that she has trouble getting on the sidewalk, I drove to the corner, where the walk is very low, for the disabled and those in wheelchairs to go on.  To get in the church is a ramp, but that is half way down the block. Remembering what happened in the past, and also what happened earlier that morning (trying to get her out of a chair, and viewing her legs were weak), these were the reasons why I drove her to the corner. She was not happy with that, so I drove around to the spot she wanted to get out of, and while it took a while for her to get her foot up on the sidewalk, with some help, she  began to walk, and got to the ramp and into the church building.

It wasn’t until today I found out she was angry about that to the point she could not really enjoy the church service. As for me, I did not notice there was a problem, so for me I went on my merry way after she got on the sidewalk, to go to my church for service. Today’s conversation started with my mother giving me a compliment:  she said she could learn from me as I don’t hold a grudge, and if I do, I don’t hold it for long. Not knowing what she was talking about, she continued to tell me her perspective on what happened yesterday morning; I told her I had no clue she was even upset with what I did, and I explained my side of the story: of why I drove to the corner thinking I was doing what was in her best interest. After much talking, she admitted now that she knew my perspective, she even more realized that holding a grudge was a dumb thing to do on her part.

After all of that, it was agreed I would let her out on the corner when taking her to church. Once perspective is known, it is quite interesting how far apart two perspective can be.

I learned something too that perhaps can be a help to caregivers:

• when deciding on what needs to be done regarding your loved one, make sure they understand why you are doing what you are doing. They may have one way of doing something, and if you don’t explain (preferably before doing it) why that decision was made, they will not understand. Though I tried to explain, I suppose it was too late, and result was a little tiff between us; one was angry about it, and the other let it go, thinking it wasn’t that big of a deal.
• Giving explanations beforehand (and particularly with someone who has very little short-term memory) may be a help that will keep those disagreements to a minimum. Give your perspective.

Perspective is important for both the caregiver and the one being cared for, as communication is key; at least try to keep frustration down  as much as possible on both sides of the spectrum…

As I sit at my dining room table this evening, I begin to go into deep thought. I thought of what happened on Sunday evening, October 4, 2015 that caused my life to change as my mother’s life did the same. Diagnosed with advanced stages of dementia at the hospital, being told she was mentally lost forever, being advised to put her in a nursing home, and coming ever so close to signing her life away, but fighting for her to be reviewed by a mental health professional who said she did not have that after all. This caused me to bring her home, where she has been ever since.

There have been times when it seems she is her normal self, the mother I am used to interacting with. Then there are those times when her frustration sets in, hinging and latching onto me, and causing me to be reactive rather than proactive. It has been difficult to get used to the changes in her that cause reactions in me to come out, at times to the point of wanting to explode in anger and frustration.

Needless to say, I had to pray.

But there were times when I honestly did not know how. I would sit on my bed staring into the utter darkness of the room and say to God, “I just don’t know what to do. Please show me what needs to be done, because I have absolutely have no clue.” For me, a metamorphosis of being bolder with my words unfolded, the prayers became deeper, interwoven with God’s promises, praise erupted, replacing what felt like a bottomless pit of despair; praising God caused me to become lighter and hopeful. At least it got me to settle down and sleep, if only for a few hours.

One thing difficulty will do for the believer: when there is nowhere else to turn, there is no one to go to but God. He promises to listen to what we need to say, and will allow His presence to infiltrate the atmosphere, letting you know all is not lost, and He is not only available, but willing to be involved, if only we ask for Him to step in. It may take a while, but I can say that God keeps me stable and steady through it all.

I realized about a month ago, that I was very much on empty. It just seemed nothing was going right. I was beyond frustration about everything. After visiting with a therapist, it was suggested that I desperately needed to get away and get some rest for a couple of weeks. I did not know how I was going to do that. What if something happened to my mother while I was away? I am so behind at work that going away would only put me back even more. How was I to pay for going away, and frankly, where was I going to go? Regardless of my concerns I decided to take up that suggestion, and get away from everything. So, I went to a city by the shore a couple of hours away, a place I had never been to, and after doing some research online, I picked out the hotel, made my reservation, told my mother I really needed to get away, and she told me she knew I needed to do that, which was comforting. After her asking me some zillion times where I was going, when I was going, and when I was coming back, I finally loaded up the car and started on my journey. Not particularly sure how to get to the town, I made it there safely, called my mother to tell her I was in my hotel room, and started making the attempt to relax. My room was lovely, and as I entered the room I stopped and stared out the window at the beautiful view of the ocean, with its waves rolling to and fro, causing my mouth to turn into a smile. It was a lovely week of doing absolutely nothing. I must say I did not know how much I needed to get away until I did it. Caregivers are so busy caring for others, the thought of caring for themselves never enters their brainwaves.

Once I returned home, I noticed a change: patience had returned in caring for my mother. I smiled more and I felt rested. The second week I was home, but I still felt peaceful. Spending time with God was great, asking for forgiveness while asking for help. Giving things I could not change over to Him to handle, and relinquishing my control. Wanting to know more about Him while thanking him for this process of learning, and asking Him to tell me what He wants me to know to help others.

I did not want to go back to work, but it had to happen, and I got a surprise. I no longer was tense about getting things done. I asked God to help me be productive, and He has helped me with that. What doesn’t get done I no longer worry about it. I still have my issues with my mother, but there is a change there too; my patience with her is better. Even more, my patience with me is better.

So, to caregivers everywhere, I know I have said this in other writings, but please take time out for you. Take care of you and get away to somewhere quiet, and enjoy the waves and the atmosphere. You may be amazed at knowing how much you need to just get away.

The Plan: take Mom to the hairdresser, then to the grocery store for her to do her monthly shopping, take her home and the rest of the day would be mine. Once at the store told her I would be back in three hours (on previous shopping times that was how long it took her to finish her shopping). Rather than just wait in the car, I went home and did some chores.

What Happened: I finished the chores early, and at the second hour, I felt like I needed to go back to the store, though I didn’t know why, so I got my keys and went.  I found her in an isle, and she was done. This is going well, I thought, and even she said I had timed coming back to the store well. She asked me to get her favorite ice cream, which was at the opposite end of the store. I picked up a couple of things, and was going to get in line to pay for them, but again, I felt like I needed to go to where she was in line. good thing I did: she had fallen.

Nearby customers came to her aid, and by the time I got to the isle, she was standing up, but her face said she was in pain. At the same time there were two of the store management personnel bombarding her with questions, as she was trying to get her bag and pay for the items. The cashier what told me what happened, and I left to go to the car to get her walker. When I returned, she was sitting in a chair at the checkout, this time being bombarded with questions by a customer who said she was a nurse. Eventually the bill was paid, I put the groceries quickly in the cart, as I tried to get her out of the store as soon as possible, sensing that’s what she wanted. Silently thanking God for the heads up, we made it home, as she told me the cart moved and as she tried to reach out for it, she fell. She later called me telling me not to worry, admitting her left hip had been bothering her, but after the fall it actually felt better, as the pain she had been experiencing during the week was gone. I told her to call me if anything else happened.  And to think I thought earlier in the week that it had been a while since she had fallen…

As caregivers we have to be mentally in tune with what is going on: when those we care for aren’t walking right (which I had noticed), when you get a notion to do something, and acting  on that feeling. If I had waited until that third hour before going back to the store, who knows what would have happened. However, for caregivers, there is also another concern or feeling that I am presently experiencing.

I requested my mother call me if anything happens. She assured me she was okay, and not to worry. Too late Mom, the worrying has already begun. This is an experience I do not mean to feel, yet it happens, and I think I am not alone:  I am waiting for the other shoe to drop, defined as waiting for something else to happen. At times like these all I can do is thank God that it wasn’t worse, like rushing her to the hospital. Now I have to ask God to continue to intervene, for if he gave me the notion to go to the store earlier than scheduled, He can take care of any issues associated with the spill in the store. And, he can also quash my concerns I have about the incident. The life of a caregiver continues, trying to be lucid in the process…

There was something that occurred today that forced me to acknowledge something about myself. But before I get to that, there is something else that caregivers need to consider. My acknowledgement about myself was the result of being with my mother the majority of the day. We had talked previously and I was willing to sacrifice my appointment with the hair salon (the only treat I give myself) to take my mother to the grocery store. Kudos to her for being ready by 10am for me to get her in the car and to whatever store(s) she wanted to go. Store #1 she wasn’t there too long, and I got a chance to do my own shopping. Off to store #2: she was there from noon to almost 4pm. By that time of waiting in the car, being tired and hungry at the same time, I got a bit flustered. Finally, she came out (she wants no help as she wants to go down every aisle and do it all herself; in case you are wondering; I tried to help with the shopping which only flustered her, so I just wait in the car). I just wanted to get her home, unload our groceries and do something by myself with the time that was left of my Saturday. What was the first thing I did after the grocery unload? I found the closest restaurant and sat down and ate.

Now true, I did need to eat as I had not all day. But as I was waiting for the food, I began to analyze what took place. Why was I really here?  And when caring for my mother, which includes answering the same question multiple times (I still get frustrated with that which cause me to get angry with myself for not being more patient), I have noticed when I am in that flustered state that I find something quick to eat, and mind you it is food of the healthy kind.

This is my way of dealing with the stress of being a caregiver.  The quandary of trying to do the right thing that causes me to be angry with myself and impatient with my mother whose short-term memory is getting close to being nonexistent is no fault of her own, yet it is bothersome, and even writing that does not make me feel good. So what about you? What do you do that in your thought process is a stress buster? Is it a good way to beat the stress or is it a negative action that is only adding to existing stress? This is something that we all need to think about, admit first to ourselves before discussing it with others, and if is not a positive solution, make plans to eliminate it and develop a new and better strategy.

As for me, I was glad for the admission I made to myself. I believe it is a good first step in the attempt to cultivate the positive while getting rid of the negative. There is nothing wrong or inappropriate with having a stress buster; it just has to be one that will aid you in being a better caregiver, accentuating the positive and definitely not adding to the negative.

Be challenged and ask yourself how you deal with stress. Then do what you can to make the necessary adjustments.

The day had finally come: hearing the results of my mother’s MRI and blood tests. What would be the diagnosis and what are we to do after hearing it? I was so looking forward to this day.

At first it appeared we would get no results, as the neurologist did not have all the information, but eventually his staff obtained the documents and he pulled up the pictures of her brain on his computer. What we saw was simply amazing. It made me realize something: my mother is truly blessed. With all the atrophy of the vessels that lessens the blood flow, with all the lesions that had multiplied in her lobes, with all the “whiteness” of her  brain that shouldn’t be there, it is to me amazing she is not further along in the disease. This is the reason for her lack of short-term memory, while at the same time her long-term memory has not suffered. Bottom line: it is what it is, no need for further tests, and the neurologist told my mother to just enjoy life. Regarding the blood test results, there was no abnormalities; all was within the proper range, and the doctor was impressed giving her age.

I can’t tell you what I was expecting, but it wasn’t this. I am trying to process what I learned from our visit to the doctor which occurred yesterday afternoon, and all I can come up with is what is next? What do I do at this point?

• Be thankful for what my mother can do. She is still living independently, functioning as she always has, just at a slower pace. I am sure there are caregivers who wish who they cared for could do the same.
• Take care of myself. As we left the office, the neurologist encouraged me to take care of myself as I am the caregiver, something all caregivers should consider.
• Get informed. Based on what I viewed on the computer screen with the neurologist, I will research more and try to find more information, so should the time come when health deteriorates and decisions need to be made, I as caregiver will be ready to make the best decision for my mother.

Right now I need to take time to think about everything, mentally process what I learned yesterday, and continue caregiving, praying for guidance every step of the way…and maybe not think too much.

Life can be lived in sharp highs and flat lows. If not careful, frustration can set in, that causes us to react, and not in the correct manner. This is particularly true if you are a caregiver.

I admit I like to put things together and fix things. My mother knows that too, and whenever she needs something looked at, I’m her girl. This week I have been her tv repairman.  Every day this week I have moved the tele, trying to get a better picture reception. I have been called at 5:15am as I am getting ready for work, and (though sad to say) this week I have been happy to go to work, thinking I can put my attention to something other than a tv. Nevertheless, calls have been received that the tv doesn’t work, and after work I to her home doing my service call and attempt to fix it. When I get there the stations are off because she has changed it when I told her not to, but she does it anyway, and on and on it goes. One thing is for sure: a caregiver has to live in the key of patience. Here’s why:

Between the two of you, someone has to exhibit patience to keep confusion down to a minimum, and as much as possible keep a harmonic equilibrium of providing for your loved one while at the same time keeping a level of sanity within yourself.

Patience involves the attribute of long-suffering as Paul describes in Ephesians 4, as he:

 “beseech you that ye walk worthy of the vocation wherewith ye are called,
With all lowliness and meekness, with longsuffering,                                      forbearing one another in love;  Endeavouring to keep the unity of the Spirit in the bond of peace. There is one body, and one Spirit,  even as ye are called in one hope of your calling;”

What is your calling? Caring for your loved one, but in a way that hopefully exhibits Christlikeness. And so while I continue to be the tv repairman, I will endeavor to stay in the right key of patience, not going flat with frustration but not being impatiently sharp either,  while showing my mother what God looks like in my action of taking care of her and her tvs.

Whatever you have to do in caring for your loved one, I hope you purpose in your heart to do the same…

The definition of manplaining is synonymous with complaining. Might as well make it more personal, replacing the ‘com’ with the one who creates the words of complaining and creating the word manplaining. What does this entail exactly? Let’s look at a passage of scripture as an example found in the fifth chapter of John.

The place was called Bethesda, an aquatic area where at times it was known to be a place where people could be healed of various ailments; all except one, who was always there waiting to be placed in the water but never was.

• Point #1: if you want something done, you may have to do it yourself, unless you like having a reason to manplain. This appears to be the case here, as the crippled man was by the water for some thirty-eight years! Imagine that for a moment, but don’t come down hard on this man, take a look at yourself. How many times have you been in a situation that frustrates you, but instead of implementing some sort of change you manplain? Why do we do that? Maybe, like the man in the biblical story, there may be some fear associated with the unknown atmosphere of change, vs. being set in the territory of frustration, pain and the like. You may not like being in this territory, but at least you know what to expect from it. Could this be what is going on with the man in the bible? Could this be you?   Jesus comes on the scene, asking the man if he wants to be made whole. Here is the moment! It has finally arrived! After three and a half decades of trying to get healed, the man is being presented with an opportunity! Instead of his answering the question with “Yes, I do” with excited anticipation, instead he manplains. He tells Jesus he has tried to get in the water, but no one helps him in get in the water. Herein is point #2:
• He depends on others to get his blessing. He may depend on others to do things for him, but has he tried new things himself? Here is a new thing about to unfold, yet he stays in the familiar realm of the usual instead of embracing the amazing frontier of being whole.  Question: When the new is presented that can solve your dilemma, how do you react?

There is a happy ending to the man of Bethesda. He is no longer an invalid, but he is valid in the eyes of Jesus. The now healed man was able to walk, showing everyone who is used to seeing him one way, now carrying his mat instead of sitting on it. The man, now made whole was asked by the Jews who healed him, but the man did not know.  Later, Jesus found the man went to the temple, and told him to sin no more, lest something worse will come upon him. The healed man left and found the Jews, telling them who healed him.

• Point #3: Follow directions, even if those directions are not according to the usual way of doing things.  Jesus healed the man on the Sabbath and the man once healed followed directions of carrying his bed and walking. The Jews complained that he should not be carrying anything because it was the Sabbath, and Jesus should not have healed the man on the Sabbath. Question: Is it normal for everyone (including you) to manplain about this and that? What would happen if you did something different, like say ‘this is the day that the Lord has made; I will rejoice and be glad in it?’ What a change that would be! A mindset shift to rejoice and not manplain. What a concept! Think you can refrain from the world of mainplain?

So take a week asking God for help from the concept of manplaining to being glad in the process of life. Keep a log of how you felt, and if you will continue on this journey. It will take some time to make the change, but this could be a blessing, particularly being a caregiver of someone who frequently complains and attempts to pull you into that realm. Drop me a line and let me know how it went.