Four Generations Together!

November 24, 2015

"Is it easier now that your Mom is in a care facility since you know she is safe . . or was it easier having her at home with your Dad?" This is a question a friend asked me last week, which has really made me think. My immediate response to her was that it's not easier, but harder having her in this care facility. I feel that it was definitely easier when she was at home with my Dad. I've been pondering the last few days about why I feel this way. 

First off, I knew my Mom was getting the love and attention I feel she deserves and that I would want her to have while living at their home of 40 years, and with her hubby of 50 years!

It's harder to visit her at this care facility because I can't just sit back and relax as I would at their house. All there is to do with her is sit with her and try to carry on conversation that is getting more and more difficult.

We can no longer take our weekly field trips and our walks and hikes. Those days are sadly over! At first I thought it might work out for me to take my Mom on little walks around the neighborhood where the facility is located, but I'm finding it's not as easy as it sounds. My Mom's medications make her too sleepy and she would be too confused about what we were doing!

Mostly I just find myself feeling unsettled all the time. Do you know that feeling where you know that something is bothering you and making you feel unsettled, but yet you just can't put your finger on what it is exactly? Well that's how I feel pretty much all the time . . . always wondering what my Mom is doing, and if she is happy, entertained and being paid attention to? Is she just sitting around doing nothing as the rest of us go about our busy lives? What is she doing all day? I don't feel at peace knowing she is not at peace. . . or is she at peace? Maybe she's more at peace than I think she is! I don't know! All I know is that she would not want to be living this way, in this state! 

I don't like going on family lunch outings and trips without her. It's weird and sad not having her there! Like for Thanksgiving this year, we will all be gathering without her and that just makes me beyond sad!

It's really strange being at their house or at extended family events without her. It always feels like there's something/someone missing, and of course there is! She is definitely missed! I find myself wondering what she would be doing or saying if she were there!

As you probably know by now, my emotions have always lied pretty close to the surface when it comes to my family, but now I feel that it is more than ever. I used to laugh at my Mother-in-law for getting emotional over a sad commercial or news story, but now I completely understand. Tears are hard to hold back these days.  

With all that being said, and as hard and difficult as it is to have my Mom's health deteriorating and living away and under these circumstances, I know that she could not be anywhere else right now. Her condition worsens by the day and week and it would not work at this time to have it any other way. I don't like it, but I have no other choice but to accept it.

First time great Gram Merrilee with Claire Merrilee

From what I've heard, Mom is not eating much these days and has to be fed much of what she eats. The caregivers at her home say that she is probably only eating about 10% of her meals and we can tell that she is losing weight. Dad is going to take a scale out there sometime and find out just how much weight she has lost. She is looking "skinny minny" . . and she did not have any weight to lose in the first place! I can't figure out why she wouldn't be eating much. Has she lost her appetite? Does she not feel much hunger anymore? Is she not eating on purpose?
  

Four Generations together. . me, Mom, Sarah and Claire!

My daughter and I finally made it out to see my Mom with my new little grand baby, Claire Merrilee last week. I was 
 anxious to get out there and get some photos taken of Claire and my Mom together, and also some photos of the four of us together representing the four generations . . . Mom, me, Sarah and Claire! I'm happy about the idea of Claire and Sarah both carrying my Mom's name! (Sarah's middle name is also Merrilee.) 

My Dad was also there visiting at the same time, which was a good thing. It makes it easier to have someone else there to talk to and he was able to take our pictures!

Mom was eating lunch when we arrived . . actually she was not eating at all but just sitting at the table with her lunch in front of her and two ladies and a caregiver sitting at the same table across from her. The lady right across from her was being pretty entertaining as she often choked on her bites of food. They were eating a turkey dinner that looked pretty good, but Mom was not eating. I tried to feed her a few bites but she did not seem interested . . . not even in the chocolate pudding for dessert? That is not like her at all . . . Mom loves her sweets! It was almost as if she didn't quite understand what was happening. She drank a little apple juice, but that's all I saw her put into her mouth! 

Mom was her usual happy and friendly self but appeared so sleepy and confused. She did not make eye contact with me, was not making much sense, and could hardly keep her eyes open. We walked down to her room where we were able to take some photos. In every photo taken, her eyes appeared closed. We don't know if the meds are making her like this (sleepy and eyes barely open) or if it just the disease progressing? My Dad suspects it might be a little of both! Regardless, I feel she is going downhill. Her confusion is extreme and her brief moments of clarity might be possibly gone now. 

I'm glad we got to visit with her and to get our photos. I have a feeling those photos, though not the greatest quality, will be treasures down the road!

The day before our 4 generation photo session with my Mom, I met my Dad, my Dad's sister Pat, sister Paige, daughter Sarah and grand baby Claire at lunch. The first few minutes were spent reminiscing about my Mom and what she used to be like. Aunt Pat recalled the kindness my Mom showed to her way back in Jr High, even before my Mom and Dad were dating. My Mom was a year older than Pat and Pat was emotional as she told us about the positive impact my Mom had on her way back then. Of course my tears flowed easily too as they often do these days. Pat said she was thrilled when my Mom and Dad started dating, and especially when they got engaged! Pat could not have been happier to get her as a sister-in-law! 

My Dad then started to tell us about an experience he had a few nights previous where he woke up in the middle of the night and how there was a period of time when it was somehow revealed to him as clear as day the way my Mom used to be. My Dad has told me a few times in the last few years how his good memories of my Mom have been fading fast and he has had a hard time remembering the good old days . . . and there were A LOT of those good times to be remembered! My Dad doesn't cry easily, but his eyes welled up with tears as he half cried and half laughed and told us he would have to tell us about his experience at a later time. His emotions were getting the best of him, which I understand all too well! I text him later that night and asked him to finish his story. He text me back . . . "I think I had your mother's inner self revealed to me. I recalled clearly what she was like prior to our mission in England. She was the ultimate in sensitivity, thoughtfulness, and selflessness. Along with the background of her lifelong dread of getting her father's same disease, I realized that this experience has been an unimaginable nightmare. The part I didn't mention was that here I was at 3 o'clock in the morning crying like a baby. What an experience!" 

I can only imagine what an emotional experience that was for him . . and what an incredibly hard thing this has been for my Dad to endure for more than a decade!

It's amazing what we can experience in the wee, quiet hours of the middle of the night! I'm sure that will be a memory he will carry forever!

As I have been reading through my Mom's journals lately, I have had experiences also with coming to remember the way my Mom used to be. It has brought many tears as I just miss her so darn much . . and the way things used to be! I feel as though I have gone through the stages of grief over and over and over over the last 10-14 years! Denial . . . Anger . . . Bargaining . . . Depression . . . Acceptance . . Denial, Anger, Bargaining, Depression and Acceptance . . . I thought I had reached the acceptance phase once and for all a while ago . . . but apparently it only lasted temporarily and now we're cycling through again! I would imagine that these phases will most likely continue to the end!

Some of my friends periodically ask or send me texts about how I am holding up. This blog post may make it sound like I am a walking basket case at all times, but really I am holding up just fine! Like I said, I feel unsettled much of the time, but my life with my husband, six kids,  now grand child, and friends go on as normal. I am going about my life with my normal happy self, with just my occasional quiet, teary moments. 

I will survive. No one should worry about me. I so appreciate everybody's loving support though. It helps a ton to know how many people care and how many people loved my Mom!  Thank you thank you! How great it is that we have each other to endure life's difficulties! Love to you all as you endure yours!

Mom's first great grandchild was born and will carry her name!

November 13, 2015  

My hubby and I, new grandparents!

I went to visit my Mom last week in her new home of about 6 weeks. Things are going pretty well there as far as I know.  Her medications are keeping her mostly calm, but also quite sleepy most of the time. I've heard that she has her stubborn moments where she won't take a pill or put on a certain shirt or something like that, but other than that, it is going as well as it could under the circumstances I suppose.

Last week's visit

When I arrived in the mid afternoon, I found about 5 of the residents, including my Mom, sitting in their common area involved in a little sing-along. They were watching a video on a large tv screen of a guy in various nature settings singing old songs, with the words for them to sing along. My Mom was sitting sideways on the couch, not facing the tv or looking at it, but just listening. I'm pretty sure my Mom is not able to see very well, or at least she is probably unable to process what she is seeing . . . . but she can definitely hear. Most of the residents were not singing along but just watching. Mom sang along to the song "Take Me out to the Ball Game" and hummed along to some of the other songs. The movie, "Sound of Music" was then put on for them and I stayed with her for about 90 minutes. I attempted some conversation, but it's now pretty difficult. My mom does not make a lot of sense anymore, but I go along with her stories as if she does.

At one point we walked down to my Mom's room, but she didn't want to go in. I told her our good news that she was a new Great Grandma as my daughter just had our first grand child on Halloween morning! The baby's name is Claire Merrilee with the middle name after my Mom . . and I told my Mom that. My Mom's response after not seeming to understand much about our conversation that day, was "That makes me want to cry . . . I'm so proud!" As she teared up and got emotional, I of course did too! How cool is that that my first grand child . . . and she is a cutie I might add . . is going to carry on my Mom's name! I couldn't be more happy about that! Now we just need to get my daughter and Claire out to visit her so that we can get some photos of them together! I also want to get some photos of the four generations . . my Mom, me, Sarah and Claire! That's in the plan for next week! 

Claire Merrilee

I've been reading through my Mom's last journal . . which begins in May of 1994 and ends with her last journal entry in January, 2009! It's hard to believe that she started that journal, which is only one third full, over 20 years ago! It's fascinating to read all about her crazy busy and active life . . as I now imagine her wandering around her new place of residence and not doing much of anything. She had such a full life and was involved in so much!  Here are a few random excerpts . . .

May 1, 1994
It has been a busy time.  I not only work 3 hours every morning, but often play tennis in the afternoons. I have also recently drawn up a petition and circulated it in the East High area gathering names of those who also have concerns about the new trimester system at East. I have also been a parent representative on Salt Lake District applied Technology Committee. We have visited all of the high schools in our area to ascertain whether we need an Applied Technology Center in Salt Lake.  The answer is definitely "Yes"! and I wrote a letter to each member of the school board telling them so. I am also working many Saturdays taking my students to work in the LDS or VA Hospitals.

January, 1995
I was asked at East High to be the boy's tennis coach. (in addition to teaching her nursing careers classes!) At first I said "no", but then decided that someone needed to get them playing . . . so I started a tennis ladder. Lee H. also agreed to coach and so the two of us are working with the boys every day after school.  It's a lot of time but fun to work with Mike and Steve (my brothers) and many of their friends.

My beautiful Mom on one of their many adventures!

(The following journal entry is a classic poem written by my Mom . . .) 
July 10, 1995 
I just found a copy, as I cleaned out my file, of a poem I wrote years ago (the only one) . . .

Some talents seem so very great and easy to express
When I sit down to write a poem, I feel it is a mess
Some have a special gift for words that easily do flow
But all of my creative writing talent could be found in one's big toe!
It just doesn't seem quite fair sometimes, when my soul burst forth with words
Only to find my work quite trite and strictly for the birds
It is true that the best of poets may have started this way too?
Or should I find some other "hidden" talent to pursue? 

September 17, 1995
I drove out to Mardi and Matt's ward to tend their children while they spoke in their new ward.  I then helped Mike teach our young adult Sunday school class. After, we went to the Western Institute of Neuropsychiatry to speak in their sacrament meeting.

I am teaching two nursing assistant classes right now and am the girl's tennis coach at East High.  It's lot of  fun but I am overextended.

Mom and her nursing careers students . . . how she loved teaching those kids!

My Mom used to visit a couple that lived in the apartments by their house, on a regular and frequent basis. Both the man and the woman had Multiple Sclerosis and did not get around very well. The man was in a wheelchair and the woman was also in a wheelchair but in better condition than her husband, as she could walk around a little, but they both struggled to do a lot of things on their own. My Mom would go in and help them with different things around their apartment, and would pick things up for them and drive them to various appointments and functions. She also gave them a lot of support and love. The following journal entry is about an experience she had with the husband.

March 20, 1997
I had a very special experience with Jim R. several weeks ago.  I felt Heavenly Father's spirit there so strongly.  I sat down close to him and had good eye contact with him. He told me how depressed he was, and for the next 30 minutes we talked about the pains and suffering of Jesus Christ, and why suffering is necessary for all of us, and what a better life is ahead. I also told him how much I care about him and how much Heavenly Father cares about him. It was tearful and touching and a moment I don't want to forget.  I knew for a few moments just how much our Heavenly Father and Jesus love Jim -- and me! And how much we need to love each other.

Such a classy lady . . . my Mom has always been!! 

Perhaps a brief moment of clarity?

November 1, 2015

Dad and Mom with my oldest Sarah on Halloween, 1994

I went two and a half weeks without seeing my Mom while she was in that medical facility getting her medications regulated. It was tough not to see her . . and it was especially hard on her and my Dad too as they faced many difficult challenges during that time! My Mom was finally able to return back to her residence at the Memory Care facility a couple Tuesdays ago and I was able to go see her that next day on the Wednesday. I was amazed at how comfortable I was to go back there, even though that was the place that had brought me immediate dread and tears before. I guess I was just so happy that she was able to get out of that other place and I had so been hoping she could get back there asap. Our hope now is that she can stay at this place and that she won't become too difficult for the CNA's and staff there to handle.

You have to understand how unusual this is for my Mom to have aggressive and agitated moments. Her normal self has always been so mellow and calm. Yes, of course she raised her voice at times and got mad as any normal mother can, but she was normally so docile and kind and just the opposite of aggressive. As I have mentioned before, my Mom's aggressive behavior with this disease has not shown itself to me . . . but only once when she got mad at one of my younger sisters for something a few months ago. Other than that, I have only seen her usual calm and mellow self! So far her medications are keeping her calm, but perhaps too calm and sleepy. With the help of my Mom's doctor, my Dad is still making adjustments to the meds and trying to get it just right. We are looking for a happy medium between keeping her calm but not too sleepy.  

I said, "Smile Mom!" (A selfie, 1.5 weeks ago)

Isn't it ironic that my Mom used to teach a nursing careers class and train kids to be CNA's . . . and now she is on the other side of it all and being taken care of by them? She was a teacher who the kids adored and wanted to emulate by following in her shoes and being a nurse, or working in the medical profession. How the tables turn in life! I would love to know how many of her students pursued careers in nursing, or being a CNA or in the medical field? 

When I arrived last Wednesday to visit my Mom, I found her wrapped up in a familiar colorful afghan blanket as she was in the hall trying to get into a room a few doors down from hers. I'm not sure if she thought that was her room or what she was doing? It makes me wonder how much of her days are spent just wandering around on her own doing pretty much nothing? That makes me sad to think about . . . but she seemed happy at that moment and was in a much better state than I was expecting. She still seemed confused and didn't make a lot of sense when she talked, but somehow I think she knew me. At least I know that she was familiar and comfortable with me. My Dad arrived to visit her just a few minutes after me and so we all had a good visit together.

My Mom, in her still loving manner, has hugs for everyone! It doesn't matter who the people are -- a staff member, another resident or even the janitor, she has hugs for them! It's really quite cute to watch, but also a little awkward at times.  

One thing that frustrates me a bit is the fact that many of the activities this "Memory Care" facility provides do not meet my Mom's ability level, like playing the game of BINGO, and so I have the feeling she stays back at her room during a lot of them.  I'm not sure that she even realizes she is missing out on anything, but I just want her to have things to do during the day! I hope that the holiday season brings many musical groups into the facility! I think she would really enjoy listening to choirs sing and various musical performances! It makes me want to put a little plug in to all of you people who are musical and could provide great happiness for these people! Go volunteer at your local old folks community facility if you can! You'll bring happiness to many older and sick people, as well as to their grateful families! 

Towards the end of our visit, I couldn't help but think for a few minutes that possibly my Mom could have had some very brief moments of clarity? Could it be? As we sat and talked about the yard work that my Dad has been doing at their house, and about how their neighbor had come out to help pick up the thousands of pods in my parent's yard, my Mom said, "I can just picture Caroline (their sweetest next door neighbor) picking up the pods in the front yard . . . I will pick them up!" My Mom used to take on that job as hers and it kept her busy for hours . . and now she wants her job back!

And then as we were leaving, and as she put a huge hug on my Dad, she said, "I'm missing you . . . Where are you going? . . . Won't you let me come with you?" As we went to leave her sitting at the table to wait for her dinner to be served, and as my Dad departed for the door, she called my Dad by name . . . "Hey Mike. . . " and she repeated his name a few times. It felt like to me that for just a few brief moments she had some clarity and was realizing what was happening . . . and she couldn't believe that we were actually leaving her there!

I held it together so well up to that point. The thought of her thinking that we are abandoning her just about kills me and I lost it in the parking lot. At least I made it to the parking lot this time . . . I am making improvements! :) At this point in the disease as she is declining quite rapidly, as horrible as it may sound, I almost don't want to see improvement and moments of clarity. It's easier for me to hear that her condition is worsening and that she has no simple idea where she is or what is happening to her.  

I hope that doesn't sound like I am a an awful person that wants my Mom to deteriorate and die. You know, and she knows just how much I adore her, and I wish with all my heart that this wasn't happening to her.  As my aunt said on the phone a few days ago, "it's just so sad that this is happening to such a great person!" We just want my Mom to be comfortable and at peace, and maybe in order for her to have that, she needs to move on to the next realm. I am excited for the day that she can escape this failing mind of hers and go and be with her parents and loved ones who have moved on before. Is that so bad to wish for? Hopefully I don't sound like a thoughtless person!  

My Dad invited my family out to eat enchiladas with him the other night since he had a big pan full that he had made . . . yes, he has turned into quite the cook and even won first place at a chili contest at a ward party a little while ago!  Only a few of us could go . . . me, my married daughter Sarah and her hubby . . and my older sister Paige came too. It was good food and a fun time . . . but the absence of my Mom at their house is so strange! It's just so different to be there knowing that she's not just in the other room and about to round the corner. She is most likely never going back to that house and I kind of hate that idea. It puts a pit in my stomach to think about and it will take some time to get used to. As far as I know, my Dad wants to stay in that house that he has owned since I was 7 years old, which is understandable to a point, but it makes me wonder if it might be good one day for him to move out into a brand new smaller place that has no yard work and less to clean? Who knows what's best . . . but I guess it's really not my life or my business. My Dad will do what he feels is best for him!

Claire Merrilee, our first grandchild, born yesterday!

This past week has been an interesting one. I have experienced the very high highs of life and the very low lows of life. Life has a way of balancing out the sorrows with the joys and I often look at life being very much like a roller coaster of constant ups and downs. I guess that's how life is intended to be! I attended the funeral of a friend and acquaintance this past Friday afternoon, a gal about my age who died tragically, suddenly and unexpectedly one week ago today, leaving a husband and 3 children. There I sat at this funeral with tears flowing down my face because of the sorrow I feel for her young family who will miss her so much, while at the same time getting text messages from my only daughter Sarah who was in the hospital getting ready to have her baby . . and my first grandchild! I was, in essence, saying goodbye to one beautiful soul and welcoming another heavenly soul in one day! Such is the way life goes sometimes -- joys and sorrows, joys and sorrows! 

I am grateful for the knowledge I have that even though we will face much sorrow in this life, we will find great joys along the way . . . . and even better, there is a greater, ultimate joy that we can all find in the end . . . the chance to live with all our loved ones again with their healthy minds and bodies, and with our Savior Jesus Christ and our Heavenly Father!  What could be better than that? 

That knowledge keeps me going!