The Progression

As I wrote in the last posting, Mom is finding it is more difficult to put thoughts together. I have been knowing this for a few months, and while I noticed this, it is something else when a medical professional tells you she noticed the same.

The nurse practitioner and I had a phone meeting to talk about my mother, and when we compared notes of how she is talking and acting, they mirrored the same thing: my mother has entered the advanced stage of dementia. The good news is she still has an appetite, though at times she does not eat all of her meals, she does eat most of her food. In the advance stage a person with dementia may stop eating, have difficulty swallowing, among other physical issues. This gives a little glimmer of hope that may push back the final stage of the disease.

However, when the doctor discusses with a family member about having DNR/DNI (do not resuscitate/do not incubate) procedures in place, I sense the end time may be near. The question is how much time is left? Only God knows…

Before that end comes, now is the time to gather important papers, get information to put in the obituary, insurance papers, etc. In the meantime, all I can do is whenever I talk to her on the phone or see her in person, I will do my best to be upbeat and be that listening ear she needs…

Meeting the Need

With the pandemic happening, it is very challenging to stay in contact with Mom. For one, the phone in her room keeps needing repair. Secondly, when it is working, it has to ring for a long to allow for her to wheel herself to the phone.

This year I haven’t seen much of her because the nursing home has been shut down, not allowing any outside visitors. The last time I saw her was during the July 4th weekend, and after that, I had phone calls with her. I have to say I don’t look forward to making those calls.

I am noticing that while she sounds like my mother, she doesn’t talk like my mother. Her thoughts are not put together well. She asks about me and how I am doing, even though it is me she is talking to. During our conversation today, she asked me if I had talked to Debbie, and asked how she was doing. This time I did not bother to correct her by saying she was talking to Debbie, and I didn’t ask who she thought she was presently talking to. I told her Debbie was doing okay, and would try to arrange an appointment to come for a visit. The conversation wasn’t for long, and as my countenance fell, so to speak, I wanted to get off the phone, if I am honest. Talking to someone that is a shell of herself is disheartening.

However, I know I have to continue caring for her as best as I can, and continue to be the listening ear she so desperately needs. Hopefully the visit can be scheduled in a few days, and I can be there for her and lend a listening ear, regardless of if she makes sense or not. And regardless of how I feel, I must strive to be her caregiver, caring for her and meeting her needs as best I can. If the script was flipped, she would do the same for me…

A Movie Communication

I believe God can speak to you in any communicative way that He sees fit. I believe today it was through a movie.

Nowadays, I have many channels to watch movies. Of all the many movies at my disposal, I chose to watch one on YouTube, called Our Father’s Keeper. I read what the movie was about, and my initial thought was the father got sick, died, and the family had to cope with that. Maybe there some unresolved issues to contend with, etc. The movie began with the father having some health issues, though he did not know what it was. He even tried to do some online research about drooling from his mouth and he didn’t know it . I thought he was about to have a deadly heart attack. Boy, was I wrong. After an out from left field verbal outburst at Thanksgiving dinner with the whole family present, his wife took him to the doctor for tests. It wasn’t his heart; though he was in his late fifties, his brain scan showed he had onset Alzheimer’s disease. When I saw the picture of his brain, and all the black areas where there should have been tissue, it took me back to when I saw my mother’s test results.

This scene took me back to the 2016, when I was sitting with her in the neurologist’s office, hearing him meticulously reviewing all the results with us, particularly the way her brain looked. It was fascinating to me how there were so many disconnects and dark areas of her brain, which did not look healthy at all. I remember the doctor telling me I was a good daughter, and then he turned to my mother and tenderly told her to enjoy the rest of her life; she had dementia and there was no medication that would reverse what was happening to her brain.

The movie showed the father’s facial expression, how he seemed to look so blank, like he was living on another planet. There are times I see that in my mother. Because of the pandemic I cannot see her, and we mainly communicate by phone. This past week I knew the disease was progressing, as she called telling me to contact Debbie and let her know she needed to come and take her to choir rehearsal. I told her she was talking to Debbie. A short pause before the next response, and then she said the same thing. The conversation was a mishmash of sentences that didn’t make much sense. I tried to be patient and tell her she wasn’t at the church, she was at the nursing home. Sometimes her brain connected with that, but during most of the phone conversation it did not. She was convinced she was at the church and needed a ride home.

Regarding the movie, the father eventually passed away about six years after he was diagnosed, but the family felt a closer bond, getting along with each other better since the diagnosis of their father. A lot of parts of the movie I could identify with, but throughout the movie I kept asking God, of all the movies I could have chosen, why did you make sure I chose this one to watch?

I truly believed God was telling me something. After the movie ended and I looked out my window as the sun was beginning to set, it was as if the clouds had formed a big hand in the sky. I stared at it for a few moments, thinking if someone else looked at it, the fingers and the large hand would not have been seen. But for me, that’s what it was, like God was saying He has His hand over the situation, and He wanted me to know that though there may be something that would soon happen, not to be afraid: He was in control of it all…

Positive Report

I remember recently (perhaps last week if not before) I prayed for my mom. I prayed for her healing, also stating that God was in control yet asking Him for his help. She has been so much in mental confusion, and I had concerns, not knowing how far the dementia had taken her.

Yesterday the nurse practitioner called me to review blood test results of my mother. She stated for a woman her age (she’s 86), her test results were great, blood pressure was down, cholesterol was normal, and had not tested positive for a follow up test of the virus. We further discussed and agreed to eliminate some medications while lowering others.

Also discussed was my mother’s concern about experiencing depression and that the psychologist would be visiting her tomorrow. I asked about what level of dementia she was at, and the answer was the moderate stage. She loves to eat, can communicate well, and other than the mental confusion, she was not at the advanced stage.

I found it surprising that when I scheduled a visitation with her last week, I was told that when they told her she was very excited and couldn’t wait to see me. I was glad to hear that, as there have been times she called me, we got into an argument, and would hang up on me. And I was happy I brought her some lunch, which she enjoyed.

I thanked God that in His way He answered my request. It was great to get some positive news, while being informed that the nursing home was taking care of my mother.

Continuing to Continue

In my life, so many things have been happening. As I wrote in the last post, retirement is planned for next month, in three days I will be travelling to spend a couple of weeks with my son, his girlfriend and soon-to-be born twin boys Elijah and Josiah, meeting family there. My book has been submitted for editing and eventual publishing, finances are in order, and on and on it goes. I feel so blessed and happy that it seems things are really turning around for me.

I went to see my mother. When I saw her she was in a sad state. She needed dry sheets. I went to the nurse’s station, and was told they were aware, and someone eventually came in the room and told her she was doing her rounds and would be there shortly. It didn’t seem to be a good enough of an answer for my mother, and later I found out the nurse washed her earlier, and my mother yelled at her for doing so. I gathered the dirty clothes, telling her I would return them tomorrow cleaned and ironed. I noticed that though a chest of drawers was available for her, the clothes were stashed in the closet, as my mother thought they were being stolen, and to put them there would be a safer place.

I didn’t stay long, I just wanted to leave, and as soon as possible. I felt guilty for feeling that way. My life at this point was going so well, while her’s…

I got in my car and sat in silence. What can I do at this point? I felt guilty for going to the dentist, guilty of having a car to drive , guilty of not being able to help her, guilty that my mind was intact, while her’s was quickly deteriorating.

What do you do when you’re in a quandary like this one?

Keep living. I have to instill in myself to enjoy what I have, continue being a caregiver as best I can, and continue to be the listening ear my mother so desperately needs. Getting meds increased I do not believe at this point in time will be much help; as forgetfulness has morphed into sheer confusion, increasing medicines may not help at this juncture. The disease is what the disease does, and the best I think I can do is just be there. There have to be parameters set, like not taking a phone call at 3:30 a.m., and continue to keep answers to her questions straight and simple, not involved and long. I have enough experience to know that she will not remember what I told her anyway, and tomorrow the same questions will come.

The guilt continues to surround my mind with thoughts I care not ponder, yet it happens anyway. Prayer helps, and will continue. What about you, caregiver? How do you deal with feelings like this? I would live to hear your comments, and will post them, as I believe it would be helpful to others who are going through the same.

For now all I can say is continue to live, whatever your life may be, accepting the bad and well as the good; enjoy living life while at the same time being a caregiver…continue to continue.

Continual Struggle; Godly Solace

It has been a while since writing in this blog. A lot of decisions have occurred:

  • July: my son Stephen told me I will be a grandmother of twins; later found out they are both boys
  • before that, I made the decision to retire next year after 33 years of employment at one job
  • soon to publish a book, my first one

New things are on the horizon, and there is an unknown territory I will embark upon. At first it felt really scary, but I am getting used to the idea of being a grandmother with my mother being a great-grandmother; she seemed to be pleasantly surprised when I told her the news.

And speaking of my mother, things have changed for her while at the same time remaining the same: of course she still has dementia, which has progressed. I have noticed putting sentences together to convey a thought are becoming more challenging for her. Her mental capacity has diminished, and she has gotten more and more confused about the simplest of things and events, oftentimes bringing up things that happened in the past and thinking that is presently happening:

The nursing home being her place of employment, or a school, or a church. Her telling me her roommate is the owner of the nursing home, being suspicious of everyone (including me), while at the same time relying on me for some assurance that she is in the right place. She knows he brain does not function like it used to (so she is not in denial), which is frustrating for her because she can’t fix it. The same frustration holds true for me, as I can’t fix her either.

As of October 5th of this year, we are in our 4th year of this journey together, and I have learned to just listen to her, not offer any answers, no longer correcting what she says, and continue to be there for her. Yet living life with her is a continual struggle.

The struggle of living life is challenging. Being on the brink of experiencing the new for me is exciting, while continuing to be a caregiver is, well, a struggle. When I see my mother and attempt to carry on a conversation with her, trying to understand her questions while realizing the mom I used to know is no longer, that is where the struggle reigns. There are times when her tone of voice is what I’m used to hearing, when she is lucid are the times that I cherish. Sometimes that is far and few between.

So what can a caregiver like myself do in times when the struggle continues?

  • remember you have a life, and live it
  • replace worry and frustration with rest
  • continue to be a caregiver for your loved one, making changes along the way that will help you and your loved one while handling your care-giving responsibilities.
  • look for those friendships and support that help you within the struggle
  • find peace and contentment, from reading a book to taking in a movie or a concert, and praying to God to supply your every need.

Be encouraged to know that within the struggle, or the eye of the storm, if you will, there is a solace that will get you through the struggle. For me that is God, who offers an environment where I can go and seek the peace that only He can provide. Sorry, the solace you need is not in eating yourself into oblivion (it only leads to health problems you don’t need), it is not in shopping (it only leads to overspending of things you don’t need), or being alone (loneliness is not a good place to be). But when you discover God’s solace in the realm of prayer, going to Him for anything and everything, life becomes better to handle. It is because it is no longer you trying to do it all; you have invited God to handle the struggle as you live it, welcoming God to do the providing and supplying of needs that will get you through it all.

And that is the type of solace we all need.

“Therefore humble yourselves under the mighty hand of God, that He may exalt you in due time, casting all your care upon Him, for He cares for you.” I Peter 5:6, 7

De-stressing Frustration

Stress: a state of mental or emotional strain or tension resulting from adverse or demanding circumstances; something that causes a state of strain or tension. It can come from any event or thought that makes you feel frustrated, angry, or nervous. Stress is your body’s reaction to a challenge or demand.

de: from the French and Latin languages, when added to a verb, it means down from, or away, being separated from

Frustration: the feeling of being upset or annoyed as a result of being unable to change or achieve something; an event or circumstance that causes one to feel frustrated

Compared to last year, the months of this year so far have been much more peaceful as it pertains to caring for my mother. We overcame the hurdle of her recognizing (for the most part) she lives in a nursing home, no longer having an apartment, that I am handling her financial affairs, and always looks forward to receiving popcorn and Mr. Goodbars candy from me. She is in her second year of living at the home, and things have improved.

But there are those times when frustration stops by for a visit during our conversations, and brings its close buddy named stress along for the party.

As the dementia worsens, the same questions keep happening, namely having food to eat. One of the good aspects of the nursing home is the staff who make sure the patients have their meals, including those who don’t want to eat…but my mother is not one of those who don’t to eat, just the opposite. She makes sure she eats, though she tells me she hasn’t. I know that is not the case, however….

We had one of our many conversations on finances, and on her getting meals. Though said countless times before, me saying she is entitled to three meals a day plus snacks, she will swear she is not getting that. On this particular day she insisted on going to the nurses’ station to discuss it. To make a long story short, what I had told her numerous times, the nurses confirmed the same thoughts, even telling her of all the patients they have, they know she loves to eat, and makes sure she gets her meals. My mother said that was good, and now she knows… (give it a few seconds)…and she was back to voicing her concern of not getting anything to eat.

Frustration set in.

It is during this time I wanted the floor to open up so I could drop down and land in the driver’s side of my car so I could quickly drive away. Unfortunately, that didn’t happen, so I had to deal with this. Given a few moments, the nurses exhibited their gift of patience and continued to tell her the same thing repeatedly, and that seemed to calm her down a bit. I told her I had to leave (the location of a Zumba class was about three minutes away, and was calling my name, and I desperately needed it). Eventually, I left and got to the class. For the next two hours, I danced the frustration away through the lifting of my hands, dancing forwards and backwards, with my feet pounding on the dance floor, sweating frustration away…

Stress and not dealing with it can cause all sorts of health issues mentally as well as physically, and what help are we to those we care for if we are sick? So to all caregivers out there, please remember that we have to find an outlet to de-stress. Stress is going to occur, regardless of how we try to prevent it from happening. What counts and helps us is how we deal with stress and frustration, getting rid of its effects.

Oh, La La….

The title is part of the chorus of a song from Hillsong (Elevation Worship sings it a lot) called Let Go, a song that was ringing in my head as I woke up for the day:

So I let go, and I let love, Show me life like it's s'posed to be
An oasis, here awaits us, All the freedom I'll ever need
Now I'm alive, Oh La La, Oh La La, when I let go, then I find life
Oh La La, Oh La La, when I let go, then I find life

Today I decided to take my mother’s clothes I had cleaned to her, not staying long, but asking her how she was before I left. Initially, things were going okay until she shifted the conversation to a place I did not want to go: her bank account, something we ‘discussed’ many a time. The usual questions were asked (what bank is my monthly check going to? When I told her where it was, she stated she was told there were no branches nearby. So she asked again just where is her check.)

Having my own financial issues (being temporarily laid off as a federal government employee and receiving no pay check due to lack of a federal government budget), I truly was not in the mood to go yet another round of explaining to her she need not worry, as her check was going toward her nursing home expenses. As is usually the case, the more I tried to explain, the more it was not registering in my mother’s mind, which was the monthly check gets directly deposited in her checking account, I write a check to pay her monthly expenses, and that’s it. There are no other bills.

“Well, it seems like you never have a concern about this”, she responds, something she usually says, as though she is blaming me for not being worried like her about her finances. Not wanting to got down this familiar road yet again, I quickly told her good-bye and swiftly left.

Before I got to the nursing home, I heard a song entitled Never Alone, by Tori Kelly. I got so into the song I missed my turnoff and had to backtrack. When I got back to my car to drive home, I turned on the radio and heard the following lines from songs that were being played:

  • What a Friend we have in Jesus…
  • There ain’t nothin’ that’s gonna steal my joy
  • Holy Spirit You are welcome here…
  • In Your Presence I find peace of mind

As I continued to drive, something popped in my head; could it be that God was creatively speaking to me through song? Perhaps He was letting me know that because I have a friend in Him, I am never alone, all is okay, and I have a source to obtain the peace of mind that only He can give, encouraging me to let nothing steal my joy when situations (and sitiations) arise. I have to let it go, for when I do, that is when the oasis of life can be experienced.

Oh La La…

December 24, 2017 Addendum

I looked at my posting of last year this time entitled Knowing my blessings,  to compare how life is a year later from that date.

Last year, it seemed like life was in a turmoil. Living with my mother was a stressful time, to say the least. When nightfall came, it was like she became a different person, especially during the 1 to 3 am time frame, when I would try to sleep and she would come to yell at me. I finally realized (as my friends who had been through similar situations with their parents kept telling me) that it was time to move out, while at the same time finding a place for her to live, knowing she could no longer live by herself.

Year 2018 began with me finding a nursing home for her to live. Trying to get that concept in her mind took months not only for her to understand, but also for her to remember. Being in the caregiver role continues to teach me how to conduct myself when I talk to her. My answers have become one to two word responses. I understand that what once began three years ago of her asking me a question one week and asking it again the following week has now dwindled to her asking me the same question multiple times in the same conversation.   Though she has always told me down through the years I have the ‘patience of Job’, oftentimes I get frustrated when it comes to repeating things multiple times. But with time I have learned to keep even tempered while encouraging her in the process. Lately she calls me in the evening to make sure she is in the right place. She admits she gets scared at night, thinking she may get thrown out from the ‘hotel’, if I am coming to pick her up; eventually the thought comes to what I have told her before, that that is where she now lives and she is okay. The good thing is these conversations do not last long, and I know she just wants to be reassured that all is well. While she doesn’t like not being in control, I believe she also knows that above all I will do right by her, taking care of her finances, coming to visit her, taking her to church monthly, and bringing food to her, and surprisingly being chosen by her to do her laundry weekly, another task that’s been added to my caregiver list.

As for me, this year’s challenge regards getting healthy, knowing I can’t be sick as my mother relies on me to be there for her. Being there for her is really not an issue for me, but I acknowledge I have often felt drained from it all. It made me decide to first hire a trainer and take exercise classes weekly, see a counselor biweekly, and see a nutritionist monthly to help me eat better. As of the beginning of this month, I no longer see the counselor regularly, still in the gym with the trainer, and though it may not be much, I lost three pounds when I saw the nutritionist; what an encouragement that  was, but I must continue on.

As of this writing (being a federal government employee) my agency’s funding has run out, and Congress and the President must come up with a budget. While law has been voted upon to get paid for back wages, it looks like I and other federal workers will not be working for the week of Christmas and possibly for days after that. My finances are bleak presently.

So my comparison is this: While there are still challenges (many similar and others different between last year and this year), at the same time I remember how things were, and how things have been worked out, because of God’s supply source. I continue to trust God’s process, that He will supply my every need according to His riches. I hope you will trust His process for you as well.

“But my God shall supply all your need according to his riches in glory by Christ Jesus.” Philippians 4:19

Merry Christmas, Caregiver.

Inner P.S.S.S….

” But the God of all grace, who hath called us unto his eternal glory by Christ Jesus, after that ye have suffered a while, make you perfect, stablish, strengthen, settle you.”
(1 Peter 5: 10)

It is interesting how you think you will react, versus the reality of what actually happens. It can bring the above scripture to life. 

My mother had been in a nursing home since  mid-January of this year, and it has taken this long for her to understand that the nursing home is where she lives, she no longer has her apartment, the furniture had been donated, and so on. At least that is what I thought. 

Over the weekend she spoke of how she felt she did not exist, because she did not have any of her important papers to prove to the front desk who she was. After think about it, perhaps I could bring some documents (as she requested) to look at. Perhaps that would make her feel like she had some sort of control over something. 

Then came last night.

My mother called me, wanting to talk to me about something. She told me she was in the ‘motel’, and was getting her papers together and about to pack, so she would be ready to go home. She asked me when I was coming to get her, and if I could bring some money so she could pay her bill. I let her talk for about ten minutes in hopes of allowing her to get it all out before I commented. She finished talking, and I told her the nursing home is where she would be living. 

“Permanently?”  she asked. 

Learning to reply in short, terse sentences, I said one word: “yes.” My answer was met with empty silence on the other end of the phone. 

Though this had been said many a time, she said she had no idea she would be living in a room with three women, and doing that permanently. She admitted at that moment she was so confused she didn’t know what to do, other than knowing there was no longer a need to pack; I responded with my usual “Yes.” 

During the conversation I realized how peaceful I inwardly felt. The usual frustration coupled with unspoken anger did not exist. The fact I did not try to correct her by saying the many times I had told her about  this issue didn’t seem to matter. The inner peace allowed me to listen, be patient while she talked, give my responses in a soft tone, and allow her enough time to get her words out, without interrupting her to get my answer in. 

Eventually the conversation concluded, with her saying that she “needed time to digest all of this”, and the phone call (and all the comments that go along with it) was finished. After the call and thinking about it, I was surprised at how relaxed I was, even after the call ended. There were no worries, no time of thinking how I could ‘fix her’, while at the same realizing I couldn’t, I turned off the lights and went to bed, saying a prayer for God to help her that night, and I readied myself for what turned out to be a good night’s sleep, something I haven’t had in a while. 

Is this how one feels when God settles and establishes you after a season of turmoil and (what appears to be endless) suffering?  Is this what being strengthened feels like? Is this the result of what happens when God does the settling on the inside? 

I wish I knew when this started. I wish I could describe how good it feels. What a difference compared to when all this started over three years ago, and all the anguish I felt, feeling like my prayers were bouncing off the ceiling. I by no means am taking any credit for this, the way I feel is too good for me to do so. The God of all grace has performed this. And the same can be done for you if you just ask. I am sure no one likes to suffer (I know it’s not a good experience), but there is a promise God provides that given some time, the grace of God will come and give you the PSSS you have been looking for: the perfection (restored, mended),establishment, (turning  resolutely in a certain direction), strengthening, and settling or grounding, all things that are needed. 

” To him be glory and dominion for ever and ever. Amen.”
(1 Peter 5: 11)