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How Will People Remember My Dad

I am not trying to be morbid this morning, but I was thinking back to a couple of different funerals that I have attended over the years and it made me think of how much Alzheimer’s is defining who dad is in his later years.  How very unfair to him!  Because mom and dad moved to Fayetteville to an assisted living facility over two years ago, dad in particular, has had little contact with their neighbors and family that were left behind in Washington.  At the time that they moved, dad was displaying aggressive and paranoid tendencies. Their large social circle had reduced, partly because as you get older, it is harder for friends to get out and about, but I also think that some people didn’t know how to talk to dad.

It is my hope that his friends, family and neighbors will remember the easy going man that worked all of the time.  He was always willing to help others.  While he was teaching, he gave his FFA kids and students so much of his time and energy.  If he was home, he was working in his much loved yard and playing on the farm.  He loved to visit with neighbors and he and mom knew everything that was going on in the neighborhood.

I don’t want him to be associated only with the Alzheimer’s, although it consumes our life right now.   Although it is all important right now, this unfair Alzheimer’s is only a blip in his lifeline.  He will be 87 years old this year.  Alzheimer’s has been around for about 7 of those years.  But he had a wonderful, full life for 80 years and that should count for something.  I don’t mean for this to sound like a eulogy, but I get so caught up in the daily care that I need to remind myself to remember all of the things that he did and that we shared over the years.  He is a great father and a better husband.  He was a great neighbor and he loved his family.  Those are all of the things that I remember when I visit with him and the things that I want to remind others about him.  I think that it is time to get the photo box down again and go through them.  Although it makes me cry, it brings back so many happy memories that I should be able to be remembering with him right now, but that is not possible.  So, I will continue to do this for him and remind others of the things that have mattered in his life.  That is one sweet man!


The Support of Community

For those of you that have not read my posts from the very beginning, I grew up on a dirt road in rural Beaufort County. We lived in a house that my parents built right beside my grandparents on a farm that had been in my family for over 100 years. This is the farm that my dad grew up on. It is called the Old Ford Community. Our neighbors in that community were the people that dad grew up with, went to school and church with. They were our extended family. These friends/family were very helpful over the last couple of years that mom and dad lived there before they had to move. Middle of the night emergencies, repairs at the house, rides here and there, so much support from people that truly loved mom and dad and were loved by them. This is the type of community where people stop by in the middle of the day and bring you a pie that they had just baked or a jar of jelly that they had just canned. They also gossiped about each other and I don’t think that there was much that went on that
someone or everyone didn’t know about.
Over the years, we lost some loved members of our community. I kind of lost touch for a while as I left the area when I graduated high school. But I remember visiting with Mrs. Dallas, across the street, at her house. I remember seeing Mr. Rochelle and Mr. Benny Ray at the country store when I would go with dad or stopping by their house to visit. I bought my first horse from Mr. Durwood. I know that I am missing more that we have lost from that area. I grew up with their children and we played together, went to school together, rode the school bus together and often rode horses together.
We are getting older and that older generation is in their 80’s and 90’s now. Mr. Linwood died a couple of weeks ago. That man always had a smile on his face and a joke. He always stopped by mom and dad’s house in later years and asked if they had any trash to take to the trash dump. If he saw my car there, he would stop just to say hello. It makes me sad that dad is not conscious of the deaths of his friends and neighbors. We don’t tell him, as he doesn’t remember people by name and doesn’t comprehend the concept of death. Mom, Kathy and I traveled to the funeral because we wanted to let the family know that they were in our thoughts and prayers. I know that dad would have wanted to be there and possibly would have been a pallbearer. He would want for us to represent the Hodges family since he can not do that now.
How sad I was when I heard that Mrs. Libby had fallen and died a couple of days later. What a shock. Yes, she was older, but I don’t know of many more active people around than Mrs. Libby. My husband is very outspoken and he met her several years ago at mom and dad’s anniversary celebration. She flirted with him and was her usual blunt, wonderful self. He fell in love with her. He doesn’t know many people in the community, but he always asked about Mrs. Libby! When I would pick mom and dad up and take them to town for an appointment or to go out to eat, when we would pull up to the stop sign at Hwy 17, dad would always wave out the window. He would say, I know that Libby is looking out the window to see who is going by. We always thought that was hilarious, as he would do the same thing from his recliner in the living room. I am sure that the two of them had most of the neighborhood covered. I am very sad today that I can not represent dad at her funeral. Mom has an eye appointment at Duke that I am scared to reschedule. I hope that Mrs. Libby knows how much she was loved and will be missed. I know that the Old Ford community is banding together in the face of so many recent losses. You do not find communities like this very often and I was very fortunate to have been part of it growing up.

POA’s, Wills, Paperwork, Oh My

Years ago, dad and mom went to a local lawyer, Wayland Sermons, in Washington, and had wills drawn up.  Dad gave me a copy to keep and I filed it away.  Several years later they had a power of attorney document drawn up for both of them.  Basically it said, if something happened to mom, dad took over and if something happened to mom, dad took over.  Very basic and pretty normal for that era.

When we first noticed that dad was having a problem, I knew enough to know that I wanted their legal documents reviewed to make sure that we were covered in the event that dad got worse, which we knew that he would.  The thing about POAs is that you can not get them after someone has lost their capacity to make a decision.  So it is very important to get everything in order before you need it.  Dad was a little perplexed as to why we wanted to meet with a lawyer as he thought that everything was fine.  Of course, by then Wayland Sermons was no longer available and we went to a family friend.  The main purpose that I wanted to accomplish was to get my name on the POA as a contingent so that I could take over some of the duties and decisions that mom no longer wanted to deal with.  So the lawyer went over their wills and their POAs and revised the POAs to read that I was the back up for both.  He also advised and implemented the living will and healthcare POA for both of them. At that time, the durable POA had to be recorded with the registrar of deeds or it was not valid.  So, we had it recorded.

That 30 minutes and a couple of phone calls was the best time that we spent in preparing for what was to come.  I understand that particularly with the generation of our parents, that it is often hard to have these discussions and they certainly don’t want to have to rely on anyone to take care of them in the future.  If it had not been of the Alzheimer’s, mom and dad would still be living on their own on the farm.  There would be challenges, but they would not be any worse off than hundreds of elderly before them that took care of themselves with a little help.  I am very grateful that dad complied and did not fight my help.  The last two years, as difficult as they have been, have been much easier with all of the paperwork in place.

Recently, it dawned on me that mom and dad are completely dependent upon me for everything now.  What if something happened to me?  I asked the lawyer, that we retained last year, how hard would it be for my sister or brother to take over the finances and jump in and take control of things for mom and dad (which they both would do in a minute). The lawyer said that it would have to go to court to have them appointed guardians for mom and dad.  So, I am still learning things as I go along.  With that presenting itself as a challenge in the future, we revised mom’s POAs to reflect a contingency plan that included my brother and sister.  We can not revise dad’s because his mental capacity is such that he is unable to make decisions for himself.  Now I feel that we have strengthened our plan for care of mom and dad.

My husband and I also put all of this into affect for ourselves.  We had the lawyer draw up all of our POAs and they all include contingencies. My son thinks this is morbid to think about or discuss, but I will be realistic and prepare things as best that I can for my children.    The best decision that my brother, sister and myself made last year was to retain an elder lawyer to help us navigate through everything with mom and dad and to get a little help for ourselves also.  I am very grateful for the support, advice and tangible results that the lawyer has offered us.  Things change and sometimes you need a little help.

Getting Your Paperwork in Order, Part I

As we make this journey with our parents into their late elder years, it often emphasizes the difference in generations. When I was growing up, we did not discuss finances or other “adult” topics.  Finally when dad approached retirement, mom and dad gave me a copy of their will so I would have it in case it was needed.  When they had the will prepared, their lawyer prepared a durable POA for them also.  The POA was very basic and just gave POA to each other, as expected and normal for that time.   Besides the will and the POA, I had no idea really of the state of mom and dad’s finances.  If I asked a direct question, mom would answer me, but I always felt that it was a topic that we never discussed.   More to come on POA’s in a future post.

During the initial discovery of dad’s Alzheimer’s, I learned that dad had been struggling for a while with keeping the checkbook and finances straight.   My parents kept every piece of paper that came into that house since 1955.  They had turned the middle bedroom into a mini office. There was a file for everything.  At one time, it was orderly, but just the amount of records was overwhelming.  They did nothing online, so everything was a hard copy.  When dad started experiencing problems, he inadvertently moved things around, refiled things and filed things randomly.  Tax time was a nightmare.  So, mom took over the checkbook, but with everything that was going on she was quickly overwhelmed and confused.  She called me and said that she could not do it anymore.  I took over their finances about 5 years ago.   I converted everything to online accounts and changed the address on everything so that it came to my house and ultimately phased out most of the paper mail.  Mom and dad had a small nest egg.  They never had a lot of money, but dad had meticulously planned for their retirement and future.  He had paid off the house and cars before retirement.  He gets social security and a retirement check from the state.  He was always frugal – mom, not so much.

So, our roles began to change.  The transition of me taking over the finances was never openly discussed with dad, it just happened.  Having the bills come through my hands emphasized mom’s love of shopping and a need to curtail that.  All of a sudden I was having to make decisions for them.  This is probably one of the hardest areas to navigate with your adult parents.  Dad readily accepted my help and never questioned me.  This is not the case usually.  Most adults of mom and dad’s era are private about their resources.  They will not readily relinquish control.  Speaking with other children of aging parents, I see their struggle to get into a position where they can help.  Most often the man was the primary financial manager and sometimes the wife has never actually had to take on that responsibility.  I see so much difference in my generation, that will make it easier for us to manage.  Both my husband and myself can manage our finances.   We have discussed finances over the years with our children.  The conversations are much more open and accepted.

I have learned so much that I am already implementing to make sure that I don’t leave a mess for our kids.  I know that some people think that this is morbid to think about and discuss.  It is realistic.  I do not plan on leaving this earth any time soon, but the one thing that I have learned is that tomorrow is not promised.  I am not obsessed with this topic.  I use the things that I have learned to make my life more uncluttered and simpler to live everyday.   I used the opportunity when we moved last May to purge everything that I had kept over the years that was of no value to anyone but me.  I am pretty sure that 20 to 30 years from now that Hunter is not going to be interested in every paper that he brought home in kindergarten.

My biggest concern is figuring out how to leave access to any online accounts that I have.  I am not necessarily talking about bank accounts, but more the emails, the google doc accounts, the real estate related websites that I pay for automatically every month.  I think that will be our challenge in the future.

So, I have transitioned into that period in life where I am my parents’ parent and my childrens’ parent.  I have no doubt that I will be difficult when I have to transition that role to my children.  For that, I apologize ahead of time.  For the time being, I will continue to save for the future and my retirement.  I will continue to simplify my belongings.  Being mom and dad’s advocate and manager is an ongoing learning process.  I will do my best to allow them to live with respect and dignity throughout a time that is not very dignified at all.


Fast Forward Two Years

It has been over two years since I have used this site and posted anything.  After the last post, things digressed rapidly.  Dad grew more combative and harder to manage.  Mom’s health declined because of the stress.  In October of 2015, mom fell and fractured her pelvis.  That required us to increase help in their home to 24 hours a day.  The change in routine escalated dad’s issues and the house became a dangerous place for both of them.  During November and December, we spent over $10,000 a month in home health care. Mom and dad’s resources are limited and we knew that we could not continue as we were going.  Mike, Kathy and myself made the decision that it was time to move them both out of the house and into an assisted living home.

After visiting several homes in the Fayetteville area and getting references from friends, we chose the Carillon in Fayetteville.  The major deciding factor, besides the fact that it came personally recommended from a dear, personal friend, is that it could safely house dad in a memory care unit and mom could stay on the assisted living side. January 11th, 2016 was the hardest day of my life when we picked up dad and took him from his home of 84 years and brought him to Fayetteville.  I still am not prepared to relive that day.

Now, two years later, we have had our ups and downs, but we know, as sad as it is, we made the right decision at the right time.  Dad has a wonderful doctor here that adjusted his medication and I truly feel that he is as happy and content as he can be in the circumstances.  Mom has her independence on the assisted living side and can visit with dad as often as they both want during the day.  Most days, she walks down to his side a couple of times a day and brings dad out to sit in the “living room” as dad calls it or they go to mom’s room to watch tv.  We know that mom and dad are getting three balanced meals every day and their medications are regulated.  Mom misses her lifelong friends, but she converses with them on the phone.

So, I am sorry that the last two years have been busy and difficult and I didn’t always feel like sharing, but I intend to move forward and continue posting and share some of what we have learned in this heartbreaking journey of Alzheimer’s in the hopes that I can help someone that is going through the same challenges.

Another Birthday

It is that time of year.  Dad’s birthday was on September 5th.  He was 84 years old.  Very grateful for another year!  I arranged for my son, his wife and my grandson to meet me at mom and dad’s on Saturday so that we could celebrate his birthday.  We cooked lunch and took it with us.  It is actually easier to move my grandson back and forth, in and out of his carseat than it is is to get mom and dad in and out of the car and into a restaurant.  And after we get in the restaurant, then we have another 15 minutes while we try to decide what everyone wants to order.  So in order to have a nice, stressfree birthday, we decided to eat at the house.

We spent a nice morning visiting in the living room and watching Aiden play with cars and trucks on the floor.  Very relaxing and enjoyable.  After lunch dad and I got his truck out and Hunter, Brittany and Aiden crawled in the back.  We were going to take a slow drive down into the field and around the pond, as it is one of the things that dad enjoys the most.  As we started down the lane between our farm and the farm next door, the cows from next door were lined up under the trees for shade.  Aiden thought that was so great to get that close and “talk” to the cows. At three years old, everything to do with animals is fun.  Dad thoroughly enjoyed watching Aiden enjoy himself.  The entire day was a great success!

Yesterday, I paid another visit to mom and dad’s house.  While we were visiting, dad told me that he couldn’t remember who brought the little boy, but someone had come out recently and brought the cutest little boy.  Dad told me that he put him in the back of the truck and took him to see the cows.  Dad was smiling and laughing and telling me how much he enjoyed seeing the little boy have fun.  He doesn’t remember who Aiden is and he doesn’t remember that I was with him and drove the truck, but he has a great memory that he enjoys telling people about.  That’s what is important!  We will continue to take the time to help him make new memories that he might not completely remember, but he remembers how they make him feel and that is important also.11947663_10152953879855793_3352891076913379864_n

Caregiver Issues

At this point in time, we rely on my mom to be my dad’s primary caregiver.  Up to this point, dad has needed guidance and patience.  He often can not remember how to get dressed, but he does not need physical help, just someone to tell him to put his socks on before he puts his shoes on. And yes, I do understand that it is a supreme challenge to always be there for someone, but at least we have not had to look at round the clock care yet.

If you have ever researched the cost of an Alzheimers facility, the cost can range from $5000/ month upwards.  And it is not only a cost factor.  Dad does not want to leave home — ever.  Yes, we know that the day will come, but I can not obsess about that now; there are too many daily worries to overcome.  We are very lucky that we have found a wonderful, caring, experienced person to come to their house 4 days a week to help them out.  Katy is wonderful because she provides moral support to both of them and they have very different needs, believe me!  Sometime in the near future, we will have to increase that time to 5, 6 and then 7 days a week.  It will get more expensive, but still will be less expensive than a facility and dad will remain happier.

Our biggest challenge right now is the fact that mom is also exhibiting signs of dementia.  We understand that as you get older you will experience more memory issues, but we are seeing more drastic changes in her.  We feel that a large part of her recent decline is because of increased medication that she is taking.  She depends on doctors and medication and I think that she takes way too much to the detriment of her health instead of the other way around.  So, now we are posed with another problem. Our caregiver needs a caregiver.   Our first plan is to meet with mom’s doctors, all 10 or 15 of them, and see what medications we can wean her off of.  Her world revolves around her doctor visits and she is validated when they prescribe a new medication.  It will not be an easy process and it will have to be monitored all of the time, but she can not continue the way that she is going right now!  I do place some blame on her doctors.  You have an 87 year old woman and you constantly prescribe anti psychotics and narcotics.  Wish us luck as we attempt this huge undertaking.  It will not be an easy task.