Category Archives: Alzheimer’s and Dementia

How Will People Remember My Dad

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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!

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The Community’s View on Dementia and Alzheimer’s

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This journey with dad has opened my eyes to many things.  I admit that I lumped elderly or “old” people as a group with certain attributes that were to be expected, forgetful, sometimes frail, walkers, hard of hearing, etc.   As I have spent more time with mom and dad over the last several years and particularly with dad, I have learned that  the public’s understanding of dementia and Alzheimer’s is definitely lacking.

A short journey to a doctor’s appointment is an ordeal.  Dad’s doctor is wonderful and understands dementia and gets to know his individual patients.  He knows that dad has a very short attention span and waiting makes him anxious and therefore possibly aggressive.  The doctor makes the exam as quick as possible to diminish dad’s anxiety and knows not to ask dad a lot of questions.  After the doctor is satisfied that he has laid his eyes on dad and checked him out in person, we take dad out into the waiting room where my husband keeps him entertained while I discuss any issues with the doctor.  This routine works well for us.

Unfortunately most offices are not set up to accommodate these issues.  A lot of it is total misunderstanding of the disease and its symptoms.  The last time that I took dad to the eye doctor it took us 3 hours to get in and out and I thought he would go ballistic by the time I got him out.  No amount of pleading or explaining on my part made any difference to anyone in that office and I will never take him back there again.  (And the office was not that crowded that day).  He has lost his glasses numerous times and finally sat on them and broke them.  Fortunately his eyesight is not that bad and he can read and see without his glasses, so I do not see any point in replacing them.  If I take him to the eye doctor, can he answer all of the questions that are required?  Can you read these letter?  Which screen looks better the first one or the second one?  Can you open your eyes wide and hold them open?  Don’t worry, I am only going to put a little drop in your eye.  These questions sound simple enough, but completely overwhelming to someone who is slowing losing parts of their brain’s function.

We also had a couple of unfortunate issues last year where dad fell.  I am notified immediately and I always rush to meet him at the emergency room.  I have him routed to a smaller hospital and I am able to actually call the emergency room and tell them that he has Alzheimer’s and I am on my way.    That has worked really well, but there are no processes in place at hospitals in Cumberland or Hoke County in NC that identify Alzheimer or Dementia patients.  I or my siblings stay with dad during hospital stays normally.  I was with dad when he was taken for a MRI during one stay.  The technician, although very nice, was totally oblivious to any special care that dad needed.  The bed that he was on was wheeled up to the official scanning bed and she immediately told him to move over and slide up and turn on his side and continued repeating multiple directions until I told her to move aside and let me do it.  I had told her that he had Alzheimer’s and couldn’t follow multiple directions, but she had no understanding of what I meant, even though “her grandmother had that also”.

During another stay at the hospital, the nurses were very understanding, but dad can not be given directions and left alone.  His emergency doctor was very understanding and ordered 24 hour sitters to stay with him to ensure that he had help getting out of bed, to the bathroom, etc.

So many aspects of this horrible disease are not readily understood by the masses.  Finding treatment and a cure are very important, but increasing awareness and getting procedures and training in place are important also.  How would dad be treated if he was placed in an anxious situation and responded aggressively?  Would he be restrained?  Do police understand the disease and how to talk someone down and comfort them?  So many possible scenarios, situations and pitfalls when dealing with Alzheimer’s.  So many potential education and training situations.  How do we get the word out and how do we educate emergency personnel? So much still to do in this field.

 

 

 

The Support of Community

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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.

Elder Care Lawyers

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As I mentioned in previous posts, I recently retained an elder care lawyer and I really wish that I had done this 5 years ago.  I thought of a lawyer as providing resources to help with estates, wills, probate, powers of attorney, etc.  I never thought about a lawyer helping me to navigate the financial side and helping to create plans to finance mom and dad’s future.  Even though it does cost to retain the lawyer, I feel that after what I have learned in the last 6 months, that I could definitely have saved part of their money and possibly their house if I had spoken to the correct person sooner.

I arranged for an initial conversation and agreed to pay a nominal consultation fee up front for that conversation.  I took every bit of documentation that I had for mom and dad and our meeting lasted approximately 2 hours.  We discussed, in detail, mom and dad’s financial situation, their living situation and what the future might hold.  I was immediately encouraged to hear that there were possible avenues with SSI, Medicaid and VA Benefits that I was not aware of.

The initial suggestion from the lawyer was that he take everything that I had given him and that we had discussed and he would go over all of it and then we would meet in a week to talk about a plan for the future that would consist of short term and long term goals.  Just the fact that someone had given me a glimmer of hope and that I would have someone knowledgeable guiding me lifted a great weight off of my shoulders.  I left that meeting with a renewed sense of purpose.

The next week we met again and the short term solution was to get mom and dad financially separated so that their situations could be viewed as separate entities.  That would legally allow mom to get benefits and slow down the drain from dad’s bank account.  The next step would be to get dad’s VA benefits to help supplement his current monthly income so that the little money available would last them longer.  These steps don’t take a rocket scientist to implement, but as most of you know, any government agencies and programs require convoluted, multiple steps to navigate through the process.  The lawyer quoted me a one time fee to help me through all of the processes and I readily agreed.  The fee was paid out of mom and dad’s account.

We have been working on the situation since November and we are slowly, but surely making some progress.  I have not quoted fees or exact processes here, as they both will differ depending upon where you are, the law firm that you choose and your particular situation.   I will very strongly recommend that if you are helping your parents, a spouse or your own situation that you speak with a reputable elder care lawyer for at least a consultation to see if they can help you with your individual situation.  As I said earlier, I wish that I had done this several years ago, but I didn’t even understand that I needed help or that it was available.  I think that is one of the hardest parts of dealing with Dementia and Alzheimer’s.  There is a lot of information out there, but there is actually very little direct help and support.  It can be a very lonely and scary process if you don’t know where to look for help.

 

OCD Behavior and Alzheimer’s

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When I was growing up, we didn’t hear terms such as ADD, ADHD, OCD, etc.  I am sure that I knew some people that they applied to, but we didn’t have the names and terms that we have now.  As I grew older, you heard more and more about these behaviors.  The one that intrigues me now is obsessive, compulsive disorder as it relates to Alzheimer’s.

When I look back this is not a trait or condition that I associated with my dad.  I never saw him exhibit behavior that I would associate with OCD.  I considered him to be easy-going and not particularly obsessive over anything.  I have friends and associates now that have mild forms and when we sit down to eat, I see them arrange their utensils, napkins etc.  I have worked with people that had to have symmetry at their desk with pens and pencils lined up and divided equally and papers neatly stacked.

Last year, I noticed that dad started carefully arranging his utensils at each meal.  The staff provides each resident with three glasses at each meal.  One water, one tea and one milk in hopes that at least one will appeal to them that day.  When the three glasses are set down in front of dad, he carefully arranges them right in front of him in a straight row.  His fork and spoon are carefully lined up to the left of his plate and his napkin is folded multiple times.  These are things that he has never done before and has only developed them recently.  Last Friday at lunch, it took him about 5 minutes to get his napkin folded exactly like he wanted  because the edges would not line up perfectly.

And it is not only dad, I began noticing others last year and that is when I researched it (by research I mean I googled it).  Others that sat at his table with him exhibited the same signs of arranging and lining up utensils and glasses.  The man that sits across the table from dad will carefully tap each corner of the huge flowers that are on the table-cloth.  It is a very systematic process for him and he will usually do it several times in a row before he stops.  One resident continuously smooths the table cloth as if it is the most wrinkled fabric in the world.

https://www.verywell.com/coping-with-obsessive-compulsive-behavior-97616    Visit the link that I provide here and learn more about why this develops in Alzheimer’s victims and what you need to do or not to do.  With dad at this time, these behaviors are not harmful or threatening to him.  He seems to take comfort in the routine and he deserves our patience.   I learn something new everyday!

Getting Your Paperwork in Order, Part I

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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

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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.