Dad and Alzheimers

I thought I would take a moment this morning, it has been way too long since I have done this, and write a couple of things that have been going on.

A few weeks ago my Dad had been having some health problems and so Mike and Dad went to see Dr. Lundsberg who prescribed him with a new antibiotic. About the same time that the antibiotic was prescribed Dad also had some difficulty taking some of his meds. Whether he took more than he should have, didn't take them, etc. I am not really sure....but I digress. Brian, my nephew, and his wife have moved in to stay with Dad and help him with some of the things that we, as a family are concerned about. Brian and Laurie take care of meals, dispensing meds, and help in ways that let Dad have his independence but allow us to feel more certain that he is okay. However, Brian and Laurie were seeing a steady decline in Dad's functioning. Dad was falling and having other difficulties which alarmed them and they called Mike when they found Dad on the floor and unresponsive one morning.

Mike quickly came in and decided that he needed to get Dad to the Dr. Dr. Lundsberg examined Dad but felt it was better for Mike to take him to the emergency room because he was exhibiting signs of a possible stroke. So, after Mike had taken him there, Mike called me to alert me to what was happening. They spent the entire rest of the day and into the evening assessing Dad and his situation - did EEG, CT scan, EKG, blood work, etc. and finally admitted Dad. It was determined that he had not had a stroke although he was having neurological problems, hallucinating, and definitely not responding well. The E.R. docs told them that they thought it was probably medications that were responsible for the problems that they were seeing.

Slowly, over the next few days, Dad got better enough to be released. But the dr. there said that she believed that he had Alzheimers and made an appointment for them to see an Alzheimers specialist. I told Mike that I would like to be there for that appointment and so I made arrangements to fly out.

Unfortunately, due to other constraints, I only had 5 days there. However, I am very grateful for those 5 days. The Alzheimers specialist ran a battery of tests on Dad, met with Mike and I for a personal assessment, reviewed the results from the hospital workup, and talked extensively with Dad before making a final diagnosis of Alzheimers at a moderate to moderately severe level. He prescribed him a new Alzheimers med and will meet with him in about 3 months to assess how the med is working.

Perhaps the most illuminating thing to come out of the visit was the fact that Dad seemed to feel much better and more relaxed. The dr. told him about the disease, what to expect, that we'd made some good decisions already in trying to help assure his safety while at the same time trying to maintain as much of his independence as possible, and what could be done to try and help treat it. Dad was asked how long he felt he'd been having these kinds of difficulty and he told them probably over the last 7 or 8 years. I was stunned by that response. Dad and I have talked about Alzheimers, memory loss, and he has reached out when he has become lost or couldn't remember something. However, without an actual diagnosis, I never felt like I could definitively say what was happening nor did I know how to address his concerns other than to say he needed to talk to a dr and find out what was happening. When he said that he had been realizing it for that long I felt so sad - how alone he must has felt all these years - he'd laugh and tell us about some of the silly things he had done, joke about it, voice frustration about not being able to remember something or getting lost, which was his plea for help. He must have felt a great sense of relief that it was finally out in the open and his concerns were being taken seriously. It wasn't that we didn't take them seriously before - we tried our best to make decisions that have his best interests at heart...but we always talked around "it" instead of hitting "it" head on. I don't know how that might have changed things but I do think it may have relieved some of the anxiety he has been feeling for a long time.

Another great thing that came from the meeting was they gave us a lot of info about how to care for someone with the disease. How to communicate with them, how to address some of the difficulties that will become increasingly troublesome, and things that we need to consider in the long term. I have had them emailed to each of us kids and have suggested that we email them to our children so that they will know how best to relate to Dad, especially now.

Shortly after Mom died I remember wondering if Dad could be having these problems. I discussed it with the guys but they thought I was being overly dramatic and over the top. They believed it was a lot of the stress from Mom's extended illness and from losing her, age related, just his idiosyncrasies, or even a plea for attention. How I wish I had just bulldozed my way through and gotten a good assessment done before I had returned home...but it was easier to believe that it was some of the other things than to face this too. Perhaps it was easier to see because I lived so far away or because when I came there I was actually staying with him rather than being there only a few hours and then leaving. I don't know...I just feel badly that I didn't act sooner. Now, looking back, I can see there were telltale signs well before Mom's passing. In some ways their relationship was so symbiotic that I wonder if Mom knew.

The summer that Mom died I had gotten after her to be more patient with Dad because he was doing so much for her. I felt like she was a little ungrateful and because of how badly she hurt she didn't recognize how much he was doing. Hindsight truly is 20/20 because now I believe I would have realized how his difficulties were impacting her more and I would have and should have been more sympathetic to both of them - should have stepped in and provided more of the support and care than I did. I failed them both. Hopefully she will be able to forgive me and, having learned at her expense, I will have the wisdom of Solomon to help me and my brothers help Dad.

I can see the toll the worry is taking on Mike. I think I will be heading out there several times a year for an extended visit to provide some relief for he and his family. Derk and Julia are the salt of the earth and just have a special way of diffusing whatever seems to be causing Dad discomfort. They just keep constantly serving him and he so appreciates them and how they make him feel. Lexie and Brad are also providing that constant care...cleaning bathrooms, changing sheets, doing laundry...whatever it takes to help and he is so grateful to them for that because they just seem to know he can't do it for himself anymore. Chad and Ronnie are there too - I think they make Dad feel young and of value - they often include him in watching a game that Chase is playing in or some other activity and it helps him feel connected. Jim and Maria are in regular contact - but with them living so far away and with their lives so full it is hard to be of direct help. I understand that - I find my long distance relationship wholly inadequate to provide any real help to the people there or to Dad. Hopefully my travel out there will help out on the margins...and if it becomes a viable opportunity I would sure love Dad to come here...but I worry so much about what that would do, not only to Dad, but to the rest of the family as well.

I got a call two days ago from Dad. He wants Derk and Julia to be able to go to Europe. He feels badly that Julia is the only one that hasn't been there. Dad was trying to find his old passports or his birth certificate. I had uncovered them while I was out there. This isn't a convenient time for Julia to just pick up and go but I hope they will actually find a way to be able to do that. Spring would be a much better time to go...rather than late fall or winter. Secretly I think Dad is remembering lots of those times and wanting to visit and share them before he loses those memories too. I don't know how long he has before that happens...and I don't know how well he would manage...but it is on his mind now and that is what matters.

Deanna Johnson, a dear friend from El Centro, learned first hand how hard it is to live with regrets. She shared with me some of her experience and wisdom when we lived there and I have never forgotten it. I have not always acted on it to the best of my ability - but I have never forgotten it. I can't change the past but I can act today. Tomorrow today will take its place in the past...and over time I will be able to soften my hard edges, my harsher judgements, and intemperateness...because I have acted and lived today so that I will not have regrets.... Hopefully I will do that each and every day. I pray for the wisdom, courage, patience, kindness, understanding, and energy to do so in every facet of my life.

Doctors and Mortality

Today I went to the doctor. I had gone to my eye doctor a few weeks ago because I was experiencing a sudden change in my vision. He had noted that my prescription had radically improved - and that kind of change usually was precipitated by a change in blood sugars or insulin and recommended that I get in to see my pcp - which I did. Dr. May did a lab panel and I will get the results back in a few days.

Mike (my brother) called and shared that he had taken Dad to the doctor this morning. He said that the doctor had given Dad materials to plan the end of his life. These would be advance directive materials as well as materials to help him and us make decisions that will be coming in the future. The doctor also discussed the potential problems that will most likely be occurring in the next few years and the survival rate and conditions. Mike said that the doctor looked right at Dad and said, "Joe, you're not going to be here in 10 years. I am not saying you are going to die today, tomorrow, or even next year. But these are things you need to discuss with your family." Mike said that it was a very difficult time and as he shared the meeting with me I could tell by his voice that it was even harder than he was letting on.

One of the reasons that Mike had taken Dad back to the doctor was because he wanted to have him put back on the Arricept as opposed to the Exelon patch. He felt that Dad had done better on it. The doctor agreed but cautioned Dad and Mike that the decline in cognitive ability was gone - it is not coming back. The doctor told Dad that it was important for him to take the medication because we wanted him "here" as long as possible. As things slip for Dad he becomes more and more miserly - not wanting to pay for medications and other kinds of needs (i.e. hearing aids, CT scans, vacuum bags, etc.) - always saying that he doesn't have the money. He does have the money but I think he is returning to his youth and early adulthood mentally and this is becoming a huge issue.

Mike believes that we (all the kids) ought to hold a family meeting to discuss these things and especially how we might help Dad preserve his independence and dignity for as long as possible. He is talking about next week - but I am not sure that I can get there that quickly - maybe the next week - we'll have to see.

I would like him to come live with me - but I worry that I would be taking him from everything familiar and from those he loves and Mom. I don't know how well he would maintain what he has left (cognitively). I also don't know if he would be happy here, away from everything and everyone. But I sure make the most sense. Everyone else will have to make huge family adjustments and I wouldn't have to do that much. If he were in worse shape it wouldn't matter - but he is in relatively good condition - just slipping fast. What to do? We're going to need the wisdom of Solomon.

Joseph James Pehrson

Eighty-one years ago today my father was born. In many ways I feel like Nephi, "having been born of goodly parents." How blessed I have been to have been born to these very choice people. I haven't told them enough how much I love them and how much they mean to me. I wish I could do that right now to my Mom - and I do - but I just have to hope that she hears and knows that as she watches over our family now.

Dad was the fourth child born to my grandparents (I never met them), Oliver and Maren Pehrson, who were both immigrants from Denmark. They resided in Provo, Utah where cousins and aunts and uncles lived nearby. My grandmother developed breast cancer when my Dad was quite young and passed away by the time he was seven. Those years were really hard for the family and especially for the children. All the years that I have known my Dad he has never liked "cut" flowers - they have represented death to him and especially the loss of his mom. He has always put great stock in the importance of motherhood - and I guess we know why.

My grandfather was left with a young family to raise and care for. I guess he felt he needed to find a way to do that and so he married a widowed woman with children and moved his family to Pleasant Grove, Utah where she was from. Her children were older than my dad and his siblings and I don't think that they felt really welcomed by them. It must have been very hard for everyone.

Dad learned to play the the piano and even the clarinet it school. He was pretty good at it too. He loved sports, particularly basketball and baseball/softball, and had a real passion for pitching horseshoes. He was so good at them that he was invited to play in the pros (didn't even know that there was such a thing back then but there was LOL),

He doesn't talk too much about his youth except to tell the story of some kids telling him that they had some free raisins he could eat (which turned out to be rabbit droppings) - and he won't eat a raisin to this day! LOL He will tell you about going over an overpass where trains would pass underneath through town - quite slowly. He and his cousin would gather cantaloupes, rocks, and other kinds of material and go to the overpass and then try to drop them into the smokestacks of the trains as they would pass under them. I guess they thought it was great sport!

By the time Dad turned 16 his father had passed away from a heart attack. He was 59 years old. When you talk to Dad about his memories he will tell you that he was intensely embarrassed by my Grandfather's language - the swearing. Now, anyone who has learned a language by immersion will tell you that often you learn the coarser aspects of language first and so that doesn't surprise me - but for my father it was difficult trying to fit in and he found it repulsive. As we were growing up he would tell us, "If you have to swear to talk then you don't have the vocabulary to express yourself" or "You can swear when I do" - and he NEVER did. LOL

One of the amazing things to me is that I found some old love letters that my Grandfather had written to my Grandmother - but I had to read them before I realized that they weren't my Father's to my Mother. Dad's penmanship, which is beautiful, is so close to my Grandfather's as to be indistinguishable. And the expressions of his love are just as my Dad would talk to Mother. And, if you ever see pictures of him and Dad - except for the clothes or surroundings - it is hard to tell the difference. Truly the apple doesn't fall too far from the tree.

My grandfather was a hard worker, he surveyed land for the city and county governments, and tried every way he could to build a future for his little family in their new country. Grandpa was also pretty "old school" from the "old country" too. Dad remembers that one time he was supposed to get ready for church and he was dawdling around. Grandpa was getting even more frustrated and told him that they were leaving and that he needed to get his shoes on...but by this time Dad couldn't find his shoe. So when the time to leave came Grandpa physically took him to church and presented him (without his shoe)to the bishop and said, "Here, you do something with him! I've tried and I can't." Dad was humiliated.

During those days the casket was brought back to the home of the family and everyone paid their respects there. (I don't know much about the actual funerals.) Anyway, Dad remembers Grandpa and his casket in their little living room. He said it was very somber and he was filled with grief. The night before the funeral he went to the living room and opened the casket and took his comb from his pocket, broke it in half, and then placed one half of it in with his father, closed the casket, and broke down into huge sobs. It may seem odd - but Dad really didn't have anything much to call his own - and this was a way of connecting or saying goodbye.

At this time Dad was the only one left at home, except for Grandma Pehrson's son who was retarded. Dad still felt like an outsider and yet he felt an obligation to care for them too. He worked at the telephone company as a custodian in Provo while going to high school and dreamed of getting away. On one occasion he and his cousin, Hank, decided that they would take off and go to Alaska. They started but the car leaked oil badly and they blew tire after tire and so they abandoned that dream - not enough money to keep it in oil or tires for that long of a trip. LOL

Things had been pretty difficult for a while and I am not certain how active the family was. Some, I guess, but not very. At one point Dad went to Mutual with some friends. They went into the chapel and were tossing a basketball around. Dad didn't really recognize the significance of what he was doing but a guy came into the chapel and saw them and told them that if they were going to do that they needed to leave the church. Dad didn't have anyone to explain that the chapel was different than the church and that the guy wasn't saying he wasn't welcome at church - just to take the ball outside. But Dad took him seriously and didn't step back into church for a long time. Years of feeling lonely, isolated, not wanted, and abandoned would ensue. I think that was one of the most pivotal experiences of his life - and one of the reasons that he was such a good Bishop. He went after the inactive with a vengeance - personally visiting their homes and always taking time and trying to find ways to bring them back. He always knew that there was a story there - they weren't just inactive but they were people who were lost and maybe didn't know how to come back and that most just needed to feel loved and accepted and wanted. He went out of his way to do just that. I remember when he was called as Bishop the first time he made it his mission to visit every home in his ward twice that first year...and he was at the hospital for every person who was admitted, no matter the reason. Last year I still had people come up to me and tell me that he was the best Bishop they had ever had - and I believe they meant it because they knew he loved them and he cared.

After graduation from high school Dad enrolled in the "Y" and continued to work at the telephone company. One night he was at the Provo City Library where he met my mother. The rest is history. In a way, they both rescued one another and made one another whole.

My Mother had grown up in the Bay Area of California and probably seemed quite different from the local girls. She was enrolled at the Y too and so even that would have been somewhat unusual for the time.

Dad proposed to her on the Old Springville Highway and she said yes. Mom went home to California for the summer but Dad couldn't stand it so he drove out to see her - they were married a couple of days later in my Aunt and Uncle's backyard. I guess they invited the ward to come, everyone that is except for the person who made their wedding cake - oops! My Mom also tells the story of being all ready for the ceremony and wanting one last coat of red nail polish on her nails. My Aunt warned her that wasn't probably the best idea but Mom really thought she could manage it - until she dropped the bottle and red polish spilled the length of her dress. Two of my aunts then tried to minimize the damage by taking a seam in the dress while Mom stood in it! Last year Dad and I opened the cedar chest and found her gown with the fingernail polish still there. Dad got a little teary eyed.

They made their home in a little apartment in Provo. This was during the Korean conflict and Dad was receiving draft notices. He could legitimately stay out of the military because of his widowed stepmother but he decided to enlist in the army anyway (he would later say that he wished that he had joined the Air Force instead). While Dad was away for basic training in Kansas Mom went to live with his stepmother.

Their first assignment was to Ft. Devens in Massachusetts. They lived off post in a little apartment over a home. The owners and Mom and Dad became friends and a great support to them. It was here that I was born and it was in the branch here that Dad became active. It was also here that he receive his temple recommend and prepared to take Mom and me to the temple in Salt Lake (that was the closest one to them at the time) en route to California where Dad would deploy for Korea.

Dad spent nearly two years in Korea and Japan due to army snafus. While this time was terribly hard on both of them, Dad will tell you that this was an important time for him to grow and mature in the gospel. He met for Sunday services with a small group of guys on the ship when they were in transit and that was an awfully good situation. He tells the story of getting to his first duty station and not knowing how to find the church. One day he was at the infirmary and he saw a guy that just "looked" LDS. He had a stroke of genius and started to whistle "We Thank Thee O God For a Prophet." The guy looked, listened, and then started to whistle "Come, Come Ye Saints." All was well then. It was also in Korea and Japan that he studied the Book of Mormon and the Doctrine and Covenants and really gained the foundation that would stand him in good stead all the days of his life.

Dad served as a Morris code operator and wow! he could really type - FAST! All of my life I can remember occasionally going into my folks bathroom and finding that my Dad had left a love note on the mirror (using toothpaste, lip stick, or even the condensation) for my Mom in Morris code.

When Dad returned from Korea and was finally discharged from the army he went back to school at Provo and back to the telephone company. We lived in Wymount Terrace and that is where Mike was born. It wasn't an easy transition back to civilian life and the cares of a family and all - there was some time that it was a little rocky - but Dad was serving as the Ward Clerk and got great counsel from his Bishop which Dad took to heart and somehow things started to even out.

After graduation Mom and Dad moved to Salt Lake where Dad had transferred into the sales department of the telephone company. He had been accepted to law school at the University of Utah but decided to sit out one semester to get their feet on the ground. We moved into the eastern duplex on Delno Drive. We hadn't been there but a couple of weeks and Dad was called to serve as the Ward Clerk there and Mom was called to work with the MMen & Gleaners (today's equivalent of Young Single Adults). We only lived there a short time when Derk was born, the home they would live in "forever!" came onto the market and they purchased it - and at the same time Dad was called to be bishop of the MillCreek Second Ward - he was just 28 years old. Somehow, he never got around to going back to law school - and he has wondered off and on about that decision - but I'm not sure he wouldn't have done just what he did anyway.

Over the next eight years Brad would be born, then Jimmy, and Chad. Our lives were deeply rooted to the community and ward and it was home. However, in 1965 Dad was approached by a guy about going to Germany and selling life insurance to members of the military - he could take us all with him. Mom and Dad brought the idea up with us and we said, "yeah, go for it." But as the time neared to do it we couldn't make the break. Dad had thought that this might very well be the way to get out from under the oppressive medical bills that they had incurred from the pregnancies of Jim (a total placenta previa) and Chad (rh-) and they had gone so far as to ask for counsel from Elder Spencer W. Kimball. But somehow we just couldn't do it.

However, the opportunity arose again a year later and this time we did it. Dad and Derk went over first (in July) to get things settled for us in Augsburg and Mike and I were to help Mom with our siblings, getting the house ready to rent, packed, and the move in September.

For the next two years we called Augsburg home and we loved it there. However, our branch was small and there weren't very many LDS kids and so Mom and Dad decided that we ought to move up into the Kaiserslautern region. This was a plus - there were lots of LDS people there (including youth) and there were lots of military and so earning a living would be easier. When we had lived in Augsburg Dad had been called as Branch President. When we arrived in K-Town he was called to the High Council and we thought that was great fun as we would go with him to visit branches all over the region. Mom was called as our YW president and I really thought she was the best I had ever had - and I was so sad when she was released because Dad had been called as Bishop of our ward when we were made a Stake.

In 1973 Mom and Dad returned from Germany and moved back into their home on Delno. It wasn't long until Dad was again called as Bishop and Mom was called as Stake R.S. President. Mom would often say that she thought the reason that they had called her to that was because it kept her out of the bishop's hair. LOL

In 1983 Dad and Mom, Brad and Lexie, and Jimmy and Maria decided to return to Germany for work. Rich and I already had orders to go to the K-town area - who would have thought that we could be so fortunate to have them go too??? Then Mike and Shauna decided that they would do the same. That only left Derk and Julia there in Salt Lake (Dad still feels "guilty" about that) and Chad was preparing to leave on his mission.

Wouldn't you know it - Dad was called as Bishop there too. At the time that he was called Brad was serving in the Bishopric, I was Primary President, Mike was Young Mens' President, Rich was the 70's quorum president, Shauna was the Ward Organist, Lexie and Maria were both serving with me in the Primary. What a crazy time! I think there were those who wondered if you could have a calling if you weren't related to the Pehrsons. Oddly enough, Dad called Verl Waddley (his neice's husband - they were also stationed there) as one of his counselors but Brad and Rich were called onto the High Council, everyone else continued where we were for a time.

In 1988 Rich and I returned home and moved to South Carolina. Mike and Shauna had already come home, Jim and Maria were in process of the same, and the next year Mom and Dad returned and then finally Lexie and Brad. For the next 20 years they would all work to build businesses and lives together.

In the summer of 1993 Dad suffered a heart attack, he was just 64. After a great deal of testing he had a quadruple bypass. Things started to look up. In 1999 he suffered a strangulated intestine due to adhesions that had formed as a result of the ruptured appendix that he had clear back in 1981. Other than that he has had a remarkably healthy life. He has the aches and pains of age as well as some arthritis in his knees, cataracts, and hearing loss - but all in all he is really doing very well.

Some of my most precious memories involve my parents and my life with them. I truly felt loved and wanted. And, I really believe that we had heaven on earth in our home. It wasn't until I was a teen and "knew everything" that there was really any conflict...but mostly that was because Dad would say that "they ought to take all the Hippies out and shoot 'em." LOL We had family home evening before there were manuals and an organized program. We had family prayer for as long as I can remember. And in fact, when I visit there now we gather for prayer at the end of the day. One of my most precious memories was the night that my mother died - Dad was so stoic - and so lost. We had gathered for a meal together and Dad left to go to a Branch Presidency meeting...then as he and I returned home he and I knelt in prayer...and his simple words were, "please help me to understand thy plan." It still moves me to tears - this sweet, gentle man was willing to do what he was asked...he just wanted to understand. Again, he was moved to study the gospel, reading the Book of Mormon many, many times he found truths and solace.

He has been a tower of strength throughout my life. He has had wisdom and patience galore. And most of all he loves us and we love him. Happy Birthday, Dad!