Tag Archives: Dementia

How Will People Remember My Dad

1 Reply

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!

Advertisement

The Community’s View on Dementia and Alzheimer’s

Leave a reply

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.

 

 

 

Elder Care Lawyers

Leave a reply

 

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.

 

Getting Your Paperwork in Order, Part I

Leave a reply

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

Leave a reply

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

Leave a reply

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

Leave a reply

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.

All Home Health is Not The Same

Leave a reply

A couple of months ago we had to seriously reconsider the assistance that we were using to help mom and dad.  We have seen a definite decline in mom’s mental ability over the last six months and she basically does not want the responsibility of making decisions any more.  We have had several home health assistants over the last couple of years and the main problem that we have experienced is the lack of caring on their part.  The job is not highly compensated and the requirements are not very stringent either.

We are always walking that fine line of providing what mom and dad need and conserving their money.  They are definitely on a limited budget and that makes the decisions harder sometimes.  I got recommendations from friends and then I spoke with several new agencies.  We knew that to get what we needed that we needed to increase our budget and we were prepared to do that.  When we made a decision, I spoke with the current home health agency that we were using.  They were very adamant that they could provide what we needed with one particular aide.  Of course, my thoughts were “why did it take a threat of leaving to have them take us seriously” but I listened to what they had to offer and I told them that we would try one more time.  Mom and dad do not  adjust to change very well, so we need to minimize the turnover of help.

The main thing that I was looking for in assistance for them was more help in planning.  Forgetting to buy things at the grocery store and lack of meal planning were concerns.  Treating dad with respect and helping him get out of the house and moving again was another big concern.

It turns out that we have been fortunate to have found an absolute angel.  Katie has made the biggest change in mom and dad’s life (particularly dad’s).  She oversees so much of their daily schedules.  She plans and cooks meals for them.  She has dad exercising and getting out of the house.  They both love her to pieces.  The house is cleaner and their attitudes are better.  And dad has an advocate in his corner and he realizes that.  He talks with her about his concerns and fears in a way that he can not with the rest of us.  He finally has someone that has no unreasonable expectations from him and will listen unconditionally.  That is what I want for him.  I don’t want him to worry and be scared.  I can’t stand the thought of that.

We have a long, hard road ahead of us, but it will be so much easier with Katie by our side. I am ever so grateful that she came into our lives.

A Monumental Moment

Leave a reply

20150408_13454030 years ago, Dad and Aunt Janet made the decision to log part of the woods on our farm and replant pines as a source of income for the future.  Those trees have become my dad’s babies over the years.  He has carefully coordinated with the forestry department and independent loggers to keep the underbrush down, periodic controlled burns and periodic thinning.  We have watched the trees grow from tiny saplings to tall, straight, strong trees.  My son spent many a summer vacation on a little 4 wheeler gleefully driving up and down the rows of trees.  Last fall, dad started talking about thinning the trees again.  He often talks of projects on the farm that he intends to complete that we all know will never come to fruition.  We just listen and agree with him.  But in November, he actually was contacted by a logger that came to meet him and look at the trees.  We once more realized his vulnerability in dealing with “outside” people.  Dad was talking about thinning the trees.  My brother and I talked with dad and told him that we would like to get several opinions before we committed to one person.  That lead my siblings and myself to have the conversation of whether we needed to go ahead and cut all of the trees for the current and much needed income that they would provide.

The trick became to convince dad that this was the right thing to do.  It is times like this that I understand the need to guide dad to right decisions, but I still feel duplicitous in my attempts to get him to see things our way.  Mike had the forestry department go to the farm and prepare a report for him.  I spoke with my aunt and uncle and got their blessing to cut all of the trees, as they own half.  I made the trip to Washington that day very much dreading the conversation and hoping that the right words would come.  Dad is such a kind, gentle person, but his paranoia is strong some days and he needs to be encouraged rather than challenged.  We had a regular visit and went out to lunch.  When we returned to my parents house, dad and I rode back on the farm, as we do every time I come to visit.  I told him that we had spoken to the forestry department and they had said that the trees could be harvested (that was true!).  I told him that I worried about ice storms and hurricanes destroying the trees before we could get them harvested(that is true also).  I also told him that if we harvested all of the trees, then we could replant them and he would be leaving a legacy for his grandchildren and great grandchildren.  And this was the argument that appealed to him the most.  He came back around a couple of times to thinning and we talked through the reasoning for clear cutting several times.  He looked at me and said that I should do what I thought was best and that was fine with him.  I left very relieved that the first hurdle had been overcome.

Over the next couple of weeks, as the lawyer was preparing the timber deed and getting the paperwork straight, dad relapsed a couple of times into “no one is cutting my trees down!”  Each time, mom called and I talked him down until he was calm and agreeable.  We signed the deed on a Tuesday and I got a call on Friday at noon that the loggers wanted to start that afternoon!  They were very nice and understanding when I explained the situation and told them that I had to be there for the first day of cutting.  I made arrangements to be there the next morning at nine to start the process.  I called dad and talked with him for a while about how exciting it was going to be and that I would be there to witness it with him.  He had questions and spoke of needing to be there to make sure that everything went smoothly.

I made the 2 hour trip the next morning, arriving at their house at nine.  To my great relief, I found dad excited and very much anticipating the day.  He was still making references to thinning trees, so I knew that the next couple of hours were important.  We drove down into the field to the woods where two loggers were waiting for us.  They were extremely respectful and answered all of our questions.  We sat in my truck and watched the one guy cut, drop and stack logs for 2 hours.  Dad was amazed.  It was so great watching him enjoy the process.  I took a lot of pictures and I’ll put them together into a little book for him.

When I left that first day, I told him that I could not be there every day, but that I would be back the next week to watch the loading procedure with him.  We went back on Wednesday and again, spent about an hour back in the woods watching them strip, cut and load the trees.  Again, dad was mesmerized by the big equipment and the entire process.  For the last couple of days, he has sat either in his recliner or in the yard and watched the log trucks roll out the long lane, heading towards Weyerhaeuser, loaded with his beloved pines!   It has been a wonderful process and one that I have cherished sharing with him.

Decline

2 Replies

The outbursts and episodes with dad are getting more frequent.  He has had two fits this week.  It is very hard to listen to mom describe them.  Dad acts like a child throwing a temper tantrum, only it has so much more effect on you when it is an adult.  We seem to be in some type of limbo, not quite serious enough to commit to more frequent care and yet we need to plan our next step.

I plan to visit with the supervisor of the home health that we currently use to see what the next level of care is.  We really need someone with some experience with dementia so that they can offer mom more support and guidance.  I would really love to hear how some of the rest of you are coping.