All Home Health is Not The Same

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

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.

Is Dad Capable of Subterfuge?

A concept that I have struggled with for a while is whether dad is aware of what he is doing when he yells and cusses at mom.  Now it is true that my dad used to never cuss.  I grew up, never hearing a cuss word from either of my parents.  Dad seldom raised his voice.  Yes, he got mad at us at times and he could be very stern, but he was not a loud person.

I know and understand that dad has a degenerative brain disease that will continue to adversely affect his behavior and his ability to complete even the smallest tasks.  What I have a problem with is whether he is venting his frustrations at my mom, as the person that he now has to depend on, or whether he is completely unaware of his behavior.  He threw a fit yesterday because someone went down the lane beside the house and back into the woods.  Now, both mom and dad had been told that there would be timber cruisers stopping by to cruise the pines to give us estimates on selling the timber.  Whether dad remembers that is always up for debate.  It looks like whether mom remembers that or not is also going to be up for debate.  When dad tried to start his truck to ride down in the field to see who was back there, his truck would not start.  By that time he was so upset, he did the unthinkable and he grabbed the keys to mom’s car to go.  Now, dad driving down the lane into the field is entirely acceptable, he does not have to go on a state road to do that.  But mom’s car does not go down there (until yesterday).  So, by the time that mom called my brother, they were  down the dirt road with dad frantically blowing the horn trying to get the attention of whomever was there.  My brother told mom that it was probably one of the timber cruisers that we had talked about.  Mike said that he could hear dad talking in the background, but he was not yelling or anything.  After a few minutes, Mike called back and spoke with dad himself.  He said that dad was very calm and told Mike that he just would like for whomever came to the farm would stop by the house and just let him know that they were going down there.  Very reasonable.

So, my question, does the dementia allow dad to act that differently depending upon who he talks to?  Is dad capable of hiding his emotions completely with us?  Is mom exaggerating, as she is prone to do? Or is there a fundamental problem between my parents that is manifesting itself at this time?  My mom has not handled the situation very well at times.  She has little patience with dad and often shows her resentment at having to be a caregiver.  Does that affect how dad acts?  I am at a loss on how to help either of them at this point.  Any suggestions would be greatly appreciated.

Decline

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.

A Bittersweet Christmas

My parents have spent every Christmas with us for about 24 years.  I know that because my son was three years old when I moved to Arkansas and that is when they started spending Christmas Eve with us.  When we moved back from Arkansas, my son was seven and we lived a couple of hours away from my parents, so they still came to spend Christmas with their grandchild.

About three years ago, dad said that he could not make the drive to our house anymore.  He was uncomfortable driving on I95.  So, for the last three years, we have driven to mom and dad’s house and picked them up and brought them to our house for Thanksgiving and Christmas.  This year, we drove to their house this morning and arrived back here around 2:00.  We visited throughout the afternoon.  I had planned a meal that would take minimum preparation, but still would be festive enough for Christmas Eve.  Right before dinner tonight, when dad got tired and hungry, he decided that he wanted to go home.  He says that no one told him that he had to spend the night and he needs to get home.  Of course, that is not possible.  We are not going to turn around and drive back to Washington tonight.

Tomorrow morning we have plans to go to my son’s house so that we can see what my grandson got from Santa.  Mom and dad are looking forward to see their great grandchild.  Right now dad is in the back bedroom crying because mom is not looking out for his best interest and is not protecting him.  Of course mom is upset because it hurts her feelings when dad has these episodes.  And I’m sitting here, so sad that life will never be the same.  Hopefully tomorrow morning when dad gets up, he will not remember any of this and we will have a nice day with the family before we take them home tomorrow afternoon.

But, with all of that being said, it just reiterates the fact that dad is steadily getting worse.  He needs the comfort of his own environment and his daily habits.  So this is probably the last year that they will be able to spend at our house.  We will see how the year progresses and where we are next year.

We Have Reached a Temporary Plateau

I have not written in a while.  I guess that things have been going so well (as well as can be expected) that I don’t want to jinx that.  Mom and dad have finally settled down into a routine that seems to suit them for the time being.  Dad has had fewer episodes of anger.  His memory is definitely getting worse and he recognizes less people, but he seems to accept that.  One of my concerns is their lack of exercise.  Dad is not interested in the same things in the yard that he used to be.  He still talks about yard work, his special grass and his shrubs, but he doesn’t go outside as much as he used to.  Out of 16 pecan trees left standing in their yard, he did not pick up a single pecan this season.  I took him 3 flats of pansies on Thanksgiving and they are not planted yet.  I guess that I will have to plant them when I go back to visit next week.  He can not remember how to plant them in pots.  For dad’s entire life, he has been associated in some way with plants.  He farmed, he landscaped and late in his career, he became an agriculture teacher.  His love for farming, gardening and planting has always defined him.  It is one of the joys that this horrible disease has taken from him.  That is still the hardest part to adapt to…the personality changes that we see each time we visit.  Most are subtle changes, but definitely there.  We will continue to cherish the parts of dad that we have been used to all of our lives that are still with us, while getting to know the new dad that we meet everytime we visit.

VA Benefits

One of the things that we struggle with is the cost of help for mom and dad.  Dad is adamant that he will not leave the farm.  And for him, we want to do everything that we can to make that happen for as long as we can.  Currently, we have a caregiver coming in to help out four days a week.  She is only there about 4 hours on those four days, so what she can do is limited. But she cleans and drives them around town.  She lets mom vent about her problems and she jokes around with dad.  We will soon have to increase the time that someone spends with them.  I need someone to cook meals for them and to oversee their medication.  I need someone that mom can’t boss around and manipulate.  Mom is getting tired and her judgement (not the best in good times) is getting worse.

Last week I checked into a benefit that Mike stumbled across, VA pension benefits.  I spoke with a representative and at this time, dad does not qualify.  But the purpose of the program is to provide a monthly stipend to allow the elderly to remain in their homes as long as possible.  Dad could qualify for about $2000 per month from the VA because he was active duty during the Korean war.    He will have to be more incapacitated than he is now, but we will keep it in reserve and try and utilize it when the time comes.   http://www.benefits.va.gov/PENSION  It is definitely a benefit that I encourage everyone to check into.

Walk For Alzheimer’s

 

10672195_748599968521665_5968502991617183348_nToday was the 4th Annual Walk for Alzheimer’s in Fayetteville, NC.  I’ll be honest, I am not the best volunteer or supporter, but as you all know this is near and dear to my heart.  I signed up to walk a couple of months ago.  I put my fundraising goal at $100.  Within 24 hours, my brother-in-law, Ned had given $100. How wonderful, but since I had three months left before the walk, I raised my goal to $500.  My closest friends were wonderful.  I very much appreciate their support and donations.  As of last week, I was still $300 away from my goal. Jeff Wright with Southeastern Construction of Rockfish came into the office and gave me a check for $315 to put me over my goal.  With a few more donations from some coworkers, I raised over $600 by myself.    It is such a little thing, but there are times when you feel so helpless that any little thing that you can do to contribute makes you feel more in control.

   The walk was this morning and I met my business partner, Stefanie Baber, at King’s Grant, where it was held.  It was cloudy part of the morning, which did help a little because it was so hot!! It was wonderful to see so many people gathered to help raise money and to honor the cause.  It was also very emotional.  When we had the opening ceremony and they introduced a man that is currently residing in a local nursing home for Alzheimer patients and told his story, it made me cry.  I know what his wife and family are going through and I so feel for them.  Stefanie was sniveling also.  She was there to support me and to walk for her grandmother.  Next year we will become even more involved and volunteer to help plan and set up.

     There have been so many developments in so many horrible diseases that I can only hope that there will continue to be progress made towards finding a cure or prevention for Alzheimer’s.  If you have the opportunity to participate, please take a few minutes and show your support.  It helps to be around others that understand!

Dad’s Birthday

20140904_133118Today is dad’s birthday.  He is 83 years old.  Yesterday was his wedding anniversary.  Mom and dad have been married 60 years.  I went to spend the day with dad yesterday and Kathy went today.  We try to spread out our visits, as to keep the confusion to a minimum.  I had decided that I would take dad and spend the day with him doing something fun and give mom the day to herself to relax.  She is always saying that she needs some time to herself. 

     So, when I arrived yesterday at 11:00, we visited for a little while and then I took dad with me into Washington to get some lunch.  I had made mom some homeade chicken salad for lunch, so I knew that she was settled in for the afternoon.  Dad and I went to Down on Main for lunch.  Thursday is their shrimp special lunch and dad loves shrimp.  We had a nice relaxed meal sitting out front at a little cafe table.  After lunch we drove around the block to the Estuarium.  It is a wonderful interactive museum preserving the history of the river and the area.  Dad loves history and he had a great time looking at the exhibits. There were only a few people in there, so again, he was under no pressure to interact with people.  This seems to make him nervous now.  I had signed us up to take the River Tour and around 1:15, they asked us to gather for the tour.  Gathering with the small group of people confused dad and he turned to me and told me that we had lost mom and we needed to find her before we could leave.  I told him that we had left mom at home because she wouldn’t enjoy the river ride.  He was okay then and we boarded the pontoon boat.

     We spent about 1 1/2 hours cruising down the river, frequently stopping to hear about some of the history or to see different species of cypress trees or other plant life.  Our tour guide was very knowledgeable and dad appeared to be having a wonderful time.  We discussed some of what we had seen and learned on the way home, but I never know how long an experience will remain with him before it is lost forever.

     When we got home, dad told mom that we had gone almost to Greenville and around Chocowinity and then down the river.  Mom, being mom, told him that he had already been on the boat before, so it wasn’t anything new.  That didn’t deter him, he told her about the great time that he had.

     Today Kathy and Jonas went to spend a couple of hours with mom and dad for his birthday.  Kathy told me that dad told them about his river tour yesterday and what fun he had.  Later this afternoon I called to tell him Happy Birthday officially today.  Mom said that he had told everyone about his river tour and what he had learned about the history of the area. I am so happy that I was able to share that with him.  And then the bittersweet part of the story.  When dad got on the phone so that I could tell him happy birthday, he told me about the wonderful time that he had on the river yesterday.  He then proceeded to describe what he had seen and what he had learned.  He remembered everything that the guide had told him but he didn’t remember that I had gone with him.  I am grateful for the memories that he does have and we will continue to try and help him create new ones, even if they do not stay with him long, I believe that they help his well being and I will always believe that.

In Service

Dad was raised on a farm with 3 older sisters and 1 younger sister. All four of his sisters went to Meredith College and became teachers. Everything dad ever wanted to do was anchored to the farm and plants. He was in ROTC in high school and throughout college at NCSU so that it could help pay for his tuition. He majored in Agronomy of course!
When he got out of college, he had to fulfill his obligation to the military and was in service for a couple of years. He was stationed in Georgia at Fort Benning. He attended a local church and met my mom there. Poor man didn’t stand a chance, lol. They dated and when he left Fort Benning, they were married and mom went with him. She was born and bred a city girl in a family with money. She lived in a household with a cook and a maid. And married this poor farm boy from NC, was she in for a surprise! Dad got out of the army and went to work for Cargill as a seed salesman and working on the farm. Within a year of marriage, I came along. My grandparents gave mom and dad an acre beside their house to build their own home. They still live in that house to this day!
Recently dad has told me that he feels ashamed to be honored for his service in the military, because he did not fight in a war. The Korean war was winding down when he was enlisted. I tried to tell him that it was no fault of his that he didn’t go overseas and see any action, but that I was glad that he did not. About a year ago, when my parents were still able to drive to church, the church had a military appreciation day. When they asked for each branch of the service to stand up, dad proudly stood and sang along. Later he told me that he had such mixed feelings about his military claim.
I have his uniforms and helmet from the army. He gave it to my son and I packed it away in my cedar chest. Last Christmas, my son put on the dress jacket and wore it into the living room for dad to see. He was quite pleased and spent about 30 minutes telling us about some of the people that he had met and some of the things that they had done in the army. I cherish the stories that he tells of long ago and he so enjoys the telling of them.