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.

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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.

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.