This is the time of year for cook-outs and family gatherings...as I have stated before, our family is almost always up for a gathering...especially if it involves food! Seriously, we do enjoy getting together and having a meal and sharing stories of where life is taking us at that time. I always thought that family gatherings were a type of yearly letter minus the paper. They have always been an opportunity to catch up with one another and hear the latest gossip concerning various family members.

Things are harder now. Since my dad received his Alzheimer's diagnosis, we get together less frequently. It shouldn't be that way...we really should get together more but the location and the transportation and the logistics are more and more essential to my dad having a "good day" with the family.

I know he wouldn't like this if he were aware of the issues that his attendance presented, but reality is sometimes a difficult bedfellow. Alzheimer's is a difficult bedfellow.

My mom has to fight with him regarding driving to the outing. He claims that he is capable of the drive (He was a service man for years of a major company that provided trucks for him to make service calls...he knows the area as well or better than most people and still feels that his "back roads " and "shortcuts" are the only way to get anywhere. In reality, he has difficulty remembering which way to turn out of their housing development. My mom tells him which way to turn and if she doesn't know the way to where the family gathering is being held, then, of course, my dad doesn't know how to get there either! This is guaranteed to produce an argument!

The outing has to be held in the area and must begin and end before dark.
Nutrition is an issue for many elderly folks. Alzheimer's seems to effect the hunger center of the person's brain. We have noticed that Dad doesn't eat very much and he makes poor choices (for example if there are six desserts to choose from , he will choose six desserts and eat a piece of cheese for his main course.)

Knowing this, I watch his menu choices and try to re-direct him ... Ultimately, once again, my parents will end up in an argument over the meal choices. The stuff that arguments are made of never ceases to amaze me....I think that at least one half of the arguments that occur surrounding the Altizmers are related to stress and the constant changes that make over the person into someone that is a new and unknown person in the same body that you have known for so long.

It is as if a space alien has invaded the loved one and while they look the same ...the actions and reactions and the attitudes and behaviors change and shift. I know that each family outing has the potential of being the last of something. It might be the last time that Dad knows uncle so and so or the last time that he remembers that lemon cake is his favorite dessert.
God doesn't promise any of us tomorrow. He only promises today.

I guess we have gotten a little spoiled that Dad will be the same day after day. In truth, everyone changes. It is just that the changes are so profound that they are hard to take. God is constant and always the same the Bible states. I don't think I ever realized what a wonderful gift that is until my dad got sick.

This is a time to rely on God who is the same yesterday, today and tomorrow. When life gets unsteady and when people change in profound and intricate ways, there is a firm and steady God who calls us to Himself. What a great truth! what a great God!!

My father is 88 years old and my mom is 83. They have owned their own home for well over fifty years. My dad, being a self-made man, has rarely encountered a project that he wouldn't try. In other words, hiring someone to do home improvements or repairs was an unheard of luxury for my parents. My dad's Alzheimer's diagnosis has altered very little in either of their thinking patterns. It is just understood that either or both of them will carry out any home project that needs to be accomplished.

That brings me to a weekly chore that involves mowing and trimming the lawn. As the eldest, I have attempted on many occasions to discuss hiring someone to mow the lawn. It sounds simple, doesn't it? The problem is that the suggestion that someone else should the mow the lawn is met with unbelievable resistance. I thought that my parents would welcome a neighborhood teen that would come on a regular basis and keep the lawn mowed. I was greatly mistaken!

"Why would you think that your mother and I couldn't keep up the lawn?", my dad asked after the topic came up again that someone 65 years younger should mow the lawn .
"I thought that maybe it was becoming too much work for you and mom", I noted.
"I don't know why you would think that, Bonnie, your mother and I have mowed this lawn for over 50 years without help!", he exclaimed.
"Dad, you and mom are getting older and" I began, " I won't discuss it anymore! We will mow the yard as long as we can and that is that!" my dad pronounced.

I decided to drop it there! An argument doesn't accomplish much and I could see that reasoning with either of my parents would be fruitless. My father has a memory loss issue and my mom gets stuck in her own denial. I think that the idea that Alzheimer's has changed them is too hard to accept right now. My father is in-between stages and therefore the memory loss is not too profound yet. He is still able to do many things with help and prompting. My mom continues to believe that he is "better" and even when confronted with the reality that Alzheimer's is a progressive disease of loss; it is almost impossible for her to accept. I feel mean-spirited to point out to her that she is being unrealistic. I feel fearful that their combined memory-loss and denial will lead to harmful ramifications.

The problem with Alzheimer's is that the individual doesn't lose all of their capabilities, they lose just enough to be a danger to themselves and others. I am not sure that my dad should be mowing a lawn with a dangerous blade potentially ready to cut and tear at a foot or hand that would come too close. Alternatively, I am anxious for both of my parents to be independent as long as possible. Sometimes I am angry with my dad because he is so stubborn with his capabilities and refuses to be observant of his lessening abilities. Sometimes I am angry with my mom who wants him to continue to be independent and won't consider the dangers inherent in his memory loss. I wonder if there will be an accident or something else that will pronounce an end to power tools or lawn mowers or driving.

I went by their home last week-end to find both of them exhausted and sweaty after mowing the lawn. I could imagine the neighbors saying, "what in the world are those daughters thinking to allow their parents to mow in this heat?" I listened to them as they told me about pushing the mower up the embankment of the yard and helping one another with the task.

They were proud of themselves, I noticed. One more week of their long lives and they had had the strength to tackle the lawn and finish the task.

Mowing the lawn was what they have to crow about, was I going to take that away? Soon enough, I realized, Alzheimer's will do it's corrosive work. Why couldn't they enjoy a small victory today? "The lawn looks nice" I said, and it did.

My sister lives out of town so it took us a few weeks to organize our "Father's Day" celebration with Dad. We decided to have the event at a local cafeteria. My father loves cafeterias.
I think that it is the selection of foods that are available and he loves the "see it and get it" idea behind the service at a cafeteria. He points and the food is passed to you! What could be easier..talk about fast food!!

We met after church at a busy cafeteria. It was good for the family (i.e. fast and plentiful) but not as good for my dad (i.e. busy and confusing). My father has always been a busy person. I suspect that he was the original ADHD ( Attention Deficit Disorder) person. He was always going 100 miles per hour. He never sat down in church to listen to a sermon. My dad was always the guy who had to check on the hot water heater or find the stray teen on the church grounds. He loved the involvement and always had a willing heart of service.

Now, with the Alzheimer's, my dad is not as outgoing and is even a little fearful in crowds.
He followed one of us to the food counters and he ate very little. I noted that the cafeteria may not be the best choice in the future for our family outings. Change is an interesting thing. As a family, we have known for almost a year now about the Alzheimer's, but the learning curve has been slow and painful. Each time I am with my dad, it seems that I see a new area of change. This time it was the change in his reaction to his beloved cafeteria. He just didn't enjoy it . He wanted to go home.

No one was offended. It was just hard to see that our time together was more of a strain than a blessing to him. I have noticed that, even within our tight knit family, members are not interacting with my father in the same ways. Again, a change.

He is quiet and has little to say. In the past, my father was the "life of the party", always laughing and joking and putting his arm around you. Now, with the progression of Alzheimer's, he doesn't engage people to share a joke or a private word.

My father is literally someone that we do not know. People draw back and are unsure how to interact with him. Some family avoid him. Still others confuse him and expect the same old reactions without considering the Alzheimer's effects; everyone is struggling with how to relate to him now. It is heartbreaking to track the robbery that Alzheimer's has left us. That smiling and happy man with a ready word for family and friends doesn't seem to live there anymore.

The scripture states that "all things work together for good for he that loves the Lord"...I am trusting a loving God who certainly has allowed this illness to overtake my sweet father...so far, I am having trouble seeing the "good" but then ,I don't have the big picture, God does.
So I leave it in His hands recognizing that God the Father loves my father better than I do and that ultimately He knows what is best.

I wish I could rest there. I am trying to accept the Alzheimer's and the changes that it has brought into my relationship with my dad. Somehow, I keep seeking that guy who loves cafeterias and who laughs and shares his enjoyment of life with others. I would love to hear a goofy story or see my dad walking purposefully across the front lawn exclaiming about the crab grass invasion.

I would love to catch a glimpse of the other guy who didn't have Alzheimer's. I just know him so much better and change is not one of my best things either.

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This weekend was Father's Day. Our family is very active concerning "get togethers"; family time has always been expected and anticipated. My father has 7 brothers and sisters and I have 29 first cousins...therefore there is almost always a birthday or anniversary or something that we get together to celebrate. However, this year was different.

My mother and I had decided that because of certain family events that celebrating Father's Day would have to be put off until the following weekend.

We told all parties involved EXCEPT my father; the reason, Alzheimer's! My mom was concerned that he would be concerned that we weren't celebrating on the REAL day. I understand that she doesn't want my dad to get his feelings hurt over things that we might easily avoid but her anxiety soon became the family’s anxiety. She felt that my father would know that it was Father's Day and be hurt if the family didn't respond and explain the plan to meet the following weekend for lunch.

We were all instructed to call on Father's Day and wish my dad a happy day...sounds easy enough...it turned into a nightmare! As the phone calls and well-wishers offered happy returns of the day, my father became more and more confused.

"Aren't you coming over today?", he would ask.

"When are we going out to lunch?”, he wanted to know.

As each caller explained the plan, it got more and more upsetting to my dad. Mom said that he finally wouldn't answer the phone and told her, "No one seems to know what they are doing today!"

I had to laugh! Because truer words were never spoken! Sadly, it wasn't just that day that we were confused, with an illness like Alzheimers, it is often that we are confused. The illness leaves the family unsure how to proceed. People in the family would call me to ask how to talk to my dad.

"What do you mean?", I asked my family members.

"You know, he isn't the same, how should I approach the subject?", they would ask.

"Just be loving and keep it simple", I replied. It was very sweet and loving but frustrating too. Why were they asking me? Most of these folks had interacted with him for most of their lives and now, it seemed, they were clueless! I appreciated their concern, like my mom, they didn't want to do or say anything that would cause harm. As I considered the whole "Father's Day" mess, it occurred to me that much of the confusion of the day was caused by anxiety and fear.

I understand that my relatives are afraid of the person that Alzhiemers has created. My father is not his old jolly and happy self. He rarely laughs and often sits and stares into space. He doesn't seem to be unhappy, he is just a different person than we have all known and loved. Sometimes it breaks my heart and I wish I could see that man again, but mostly I am trying to do something that a wise friend told me to do. My friend said to "embrace what I have not what I don't have". Wise words...God has chosen to allow this to happen to my dad and I am choosing to find acceptance in His will for our lives. Embrace the time that you have with your loved ones. No one knows when or what may change them or you.

I have recently concluded that my father is in the moderate stage of Alzheimer's Disease (AD).

The moderate stage generally includes the following:

 

More pronounced memory problems

Difficulty with basic food preparations

Inability to perform routine household tasks

Decline in personal hygiene

Increased wandering that is not goal-directed

Agitation and irritability

Confusion ( especially at night)

 

 

Like all of the earlier symptoms, AD resists clear definition i.e., the symptoms are patchy and difficult to identify at first.

For example, last week, my father was unable and unwilling to help my 83 year mother with mowing the lawn (I know!  I have asked her to get a neighborhood kid to mow but she insists that she and dad can handle it!)  I do worry about her too...I guess this is the denial that if she allows herself to believe that dad is "normal" then maybe he is... at least for a while.

 

My mom and I had an appointment with a CPA and we left my father for about an hour and a half...It was 90 degrees and very humid that afternoon.  When we got back from our appointment, my father was sitting in their tiny living room with sweat dripping off of him.

 

My mom said  "What in the world happened? Did the air conditioning go out?"

My father replied, "No, I decided to mow the lawn."

My mother was so upset with him. She said, "Couldn't you have waited until I got home? I could have helped you."

My dad exclaimed, "I don't need you to help me mow the lawn.  I have been doing this for 50 years by myself (Which is true; my parents are from the generation that the man did it all outside the house for the wife.  My mother didn't know how to pump her own gasoline until 8 months ago!)

 

At this point an argument ensued that involved my mom reminding my dad that she wasn't gone that long and he should have waited etc.etc.etc.  While I certainly agreed with her and was very concerned about his managing the mower alone and accomplishing the lawn mowing in the heat of the afternoon, I realized as I listened to them argue that the discussion was going to be totally unsatisfying for both of them.

 

My dad would forget what was said almost at once. I respected that my mom needed to talk but reasoning with my father at this point is pretty pointless. This is one of the issues that is not listed in the "moderate stage" list for AD.

 

Reasoning with someone is a gift that we take for granted. It never crosses our minds that we cannot reason something out. The Bible says that even God calls us to "come let us reason together".

 

When a person is inflicted with AD the ability to reason is often lost in the memory lapse.  Sometimes it is available and when it occurs you rejoice...but often, like that hot afternoon at my parents house, I noticed that the reasoning was not going to help at all, in fact, it was causing more agitation for both of my parents.

 

I distracted my dad by asking if he would like something to drink.   He asked me why I asked him that.

I said, "Well, you are dripping sweat and I thought you might like some water."

His answer was, "Oh', OK ...if you think I need it"

 

Sweat and heat and exercise did not add up to being thirsty for my dad that day.  His reasonable self was not present.  I left the house feeling sad and sorely tested. My father has always been the most reasonable person that I know.  He is truly becoming someone that I don't know and I feel the loss deep.

My dad's diagnosis of Alzheimer's has lead me into a new world of financial and legal matters that I never knew existed! Alzheimer's Disease (AD) forces families and patients to handle legal issues that affect their own and their loved ones legal status.

States differ in the way that these issues are processed. Some states require that a person be found mentally incompetent before legal guardianship can be put into place. In Virginia, we learned that a diagnosis of AD and my father's attendance at the attorneys office were sufficient for power of attorney and transfer of the a mutually held deed to my mother's name only.
I understand why families are reluctant about taking this step. If a family waits too long , the hard decisions may be impossible to make. Ideally, AD patients may be competent enough in the early stages to express their wishes and the family can plan together. In our case, we waited too long for my dad to contribute to his own treatment.

Finding an attorney and determining the process involved and the cost affiliated with the services were all time consuming.
My family choose an attorney that my husband and I had used to help us with our own business a year earlier. Before we made our choice, I asked others that I trust to suggest attorneys that they were familiar with as possible candidates. Friends shared their stories and we ultimately choose someone who we felt confident in and who was experienced with elder law.
We also choose someone whom we thought would be respectful and patient with our parents and their current issues.
The lawyer was chosen and the date set and my sister and I made plans to attend.

I am the oldest daughter and I live in town. I realized early that it would be SO EASY to allow the process and the care-giving to fall on my shoulders in it's entirety!
Also, I know that, as a therapist, it would be easy to "be the counselor" and take full responsibility "for the many physical and emotional needs associated with AD. I knew that the burden would be too great! I also knew that I wanted to be involved in the care that my parents would need but that sole responsibility would be a killer! (I urge caretakers and family members of AD patients to seek support)

We are about one year into the process and I can say that it is not an illness that any one family member or any family should attempt to tackle alone! I am grateful for the strong ties that we have built as a family and my parents fellowship of believers that often offer to help or drive or assist in any way that is needed. In this way, the years of investing in the body of Christ and assisting others really returns many times over. I am impressed daily with the people that have been touched by the ministry efforts of my parents who have labored selflessly in many unsung ministries throughout their lives.

Before the meeting with the attorney, I worried that my dad would be resentful and angry about the concepts involved in power of attorney etc. I shouldn't have worried.

He was truly like a lamb : trusting us to do what was right for him. It was somehow sad and sweet all at once. Everything was explained to him and he was asked to sign numerous papers but he never questioned anything. His only question was to ask the attorney if the room we were sitting in was the attorney's personal office.
He did ask my mom if he could take off his neck-tie. The attorney said "yes", my mother said, "No , not until we are finished".
My dad went with my mom's answer.
He may be debilitated with AD but he is still a wise man!

My mother was in tears a week ago about my dad's failing ability...it was a very hard phone call. My mom is the caretaker for my father and is becoming somewhat isolated and fearful herself. She says that it is "OK" if my dad minds her. I think that she means that he will allow himself to be guided by someone with a clearer mind.

My father is a self-made man. He is a WWII veteran and a man who made a pretty good living for a family of four on a fifth grade education and some training that the GI bill afforded to him. He has always done everything for himself. I do not remember calling in a repair man EVER when growing up. If he couldn't do the job (from electric to installation to sewing), then it wasn't going to be done!

In light of that mind set, it is understandable that he still believes that he should do whatever needs to be done! The problem is that he is forgetting steps and causing a problem for all of us (my mother especially) when he attempts to fix something now. He is also unaware of what tasks he can and cannot accomplish. The Alzheimer's has robbed him of his own self-guided compass.

My husband has been over to my parents house three times to fix the telephone. It will work for a while and then ...it doesn't work. My husband realised on his last visit that my dad had tinkered with the phone ( in his mind fixed it ) and had forgotten that he had messed with it and forgotten how to really fix it.

We cannot figure out how to stop the "fixing" problem that was once such an awesome skill for my father!

My mother's tears were related to an incident that happened at their church. My father has been an usher for years at the church. His job is to direct people to the seats and greet them when they come in to the main auditorium. It seems that the other ushers were stumped with the memory issues and didn't know how to communicate with either my father or my mother (who is always with him at church) to tell them that he was having problems with his ushering duties. The other ushers choose to tell my dad at church on a Sunday morning that he was no longer needed. My mom became aware of the dismissal when my father came to her pew and sat down early.

"What happened?" she asked. "Why aren't you ushering?"
"They don't need me!" my dad reported.

Not willing to let that go, my mom went to the back of the church and asked the head usher what had caused them to dismiss my father as a usher.
They reported that he was making too many mistakes. My mom was devastated! She felt that my dad was still capable of the ushering responsibilities and had been watching his performance. She reported to me that she hadn't noticed any problems and wants my dad to do as much as he can for as long as he can.

This has been a theme for our family during the Alzheimer's journey: managing to provide safety and respect and attempting to balance the two. I cannot say that any of us have managed it as well as we would like. I worry that my dad ( who is still driving) will get into a car accident. I worry that his poor balance will result in a fall. I am concerned that he will hurt himself with the power tools in the garage. I could "what if" his current condition all day long and not solve one thing!

As a family, we have all concluded that we have to simply take this disease one slow and icky step at a time. In other words, we must make plans and do our best to provide and protect but we don't really want to rob him of his failing independence or treat him like a child. We continue to tell him that we love him. We are researching resources that may be needed in the future. We are working together to attempt to help my mom maintain her house and her dignity. We are trying to enjoy what is going on now and not always live in the past of what used to be.

Every time something happens, like the incident at church, I am trying to accept that my father's life is changing and so am I . It is not a change that I would have chosen, but the heavenly Father has allowed it and therefore, I must bow to much greater wisdom than I possess.

Alzheimers is a strange illness. The skills and abilities that we take for granted seem to come and go. My dad's memory, for example, is a fleeting and undependable thing.

One day, my dad can look up my phone number in his phone directory and call me . I was so surprised and pleased to receive a cheery and positive message on my answering machine. He said, "Hey! Bona Lynn (his favorite nickname for me), I just wanted to know how you are! Call me back!!"

Several hours later when I joyfully received the message and returned his call he said, "I don't think that I called you, are you sure?" For a split second , I thought, he is joking with me and then I remembered that he really doesn't joke anymore. He had forgotten that he had called me a just a few hours before.

If this happens often enough, you begin to question your own reality. It makes you long for the days when you KNEW he was teasing you and he would laugh and the moment would pass.
Now with Alzheimers, my father waits for me to explain that I had a message on my machine from him.

"What did I say?" he asks.
"You asked me to call you back" I reply.
"Do you know why?" my father inquires.
"No, I don't know what you had on your mind " I report.
"Oh." he says "Do you want to speak to your mother?"

In a moment, the father I have known for 56 years slips away.

I have read that many family members fear that their loved one with Alzheimers will forget them. I can relate to that. Some Alzheimers patients completely fail to recognize their relatives and friends late in the disease, while others, continue to recognize them as relatives or friends even if they are not exactly sure of the names and relationships.

I thank God every time I call my father's home and he recognizes me by name. I have never heard sweeter words than " Hey, Bonnie!"

My father is 88 years old. He grew up with 7 brothers and sisters . He was raised to farm and care for a large tobacco farm in North Carolina.

He has always been a family man, he kept us close to his immediate family and to his extended family,too! He has always been a loving and outgoing man who loved family and loved life. In the last year, things have changed for all of us. We didn't know what was wrong but we knew that the laughing, outgoing guy that we all knew and loved was replaced with a quieter and moody stranger.

Something happened that put a label on what was beginning to take place with my dad. I recieved a call from my mother who asked me to come to the hospital emergency room . It was a beautiful afternoon. I was home from church and ready to sit out in my back yard and enjoy the sunny day. My mother explained that the doctors at the ER were convinced that my father had had a stroke.

I rushed down to the hospital. My father was stable and the doctors wanted to keep him over night and run more tests in the morning.  We all agreed and made preparations for his hospital stay.

At 6:00am on Monday morning, my mother called me again.

"Bonnie, "she said, "could you go the hospital, your dad is having some trouble."
"What kind of trouble?" I asked.
"Well, my mom reported, "it seems that he is not able to stay in bed and behave himself."
"Huh?" I replied, "what do you mean?"
"He's confused and whats to come home but they haven't completed the testing so he has to stay until they are able to do that...see if you can convince him to stay.  I will be there as soon as I can!" My mother signed off with that comment.

As I drove to the hospital, I started thinking about all the times he had "forgotten" things in the last few months, and the questions that he would ask over and over (since he has a hearing loss and won't wear a hearing aid, at first we thought he simply hadn't heard us) and the change in his over-all demeanor.   I remember asking once if he was depressed.  He seemed overly dependent on my mother and was more stubburn than usual.  I arrived at the hospital room before my mom and was greeted by my father in his Sunday suit (he was admitted on Sunday and didn't have other clothes to wear) holding the white paper bag that the hospital gives with all his earthly possessions inside.  My father was standing at the door of his room ready to go home!

He asked me, "Oh, good! Did you come to take me home?"  He looked like a six year old waiting for his mommy.  I was sad to see my strong father acting like a child.  Later, I convinced him that we needed to wait for mom to come and he agreed without questions.  It was in the confines of that two day stay in the hospital that the testing revealed no physical reason for the confusion and memory issues.  It was the first time that the word,  Alzheimers, was used.  It was the first time that I was really afraid that I would lose him before he actually passed away.

Welcome to Bonnie's Journal

This site was designed to provide a place to document a journey.  The journey is familiar to perhaps millions of people who fit the so called "sandwich generation" category.  The "sandwich generation" is usually used to denote adults who are parents or caregivers for late teen or young adult children and also become responsible for aging parents...therefore the sandwich analogy!  It is definitely a squeeze!

The time involved in assistance and the stress level alone all add up to the feeling of being in a sandwich!

While the journey is familiar to others, to me, it is very new and painful...

My parents live in the local area and I am the oldest child.  I am also a therapist and have the educational and exeriencial tools to help my parents.  May father is 88 and has always been the rock of our family.  His mental capabilities are failing and my mother is struggling to learn how to do things as simple as pumping gas for the family car.  (my dad always id it for them)

I am struggling with my own denial.

What does this mean?

What should I do or not do?

Will they be OK if I don't do anything?

What is my role not?

I am filled with conflict and recognize that what is really different about this situations and therapy is that I cannot be objective because it is happening to me!