Making Decisions

Tonight was hard. My mom and I sat down to discuss Medicare choices.... Medicare Original or Advantage? Additional Prescription coverage or no? Gap coverage or no? Well, I've been looking online, and now I have the book to study. I'll be making some phone calls and researching as much as my brain can handle in order to make the decisions necessary. If it wasn't difficult enough to openly discuss the fact that we will soon need Home Health Care, we also had to discuss what we want for us and for him long term. Do we want to prolong his life at any cost? Do we mostly just want him to be comfortable and blissfully unaware? Do we want him in a clinical trial? What kind of clinical trial? Do we tell him his diagnosis or try to continue to hide it? (Which is becoming more and more difficult!) WHY WON'T MY BROTHER MAKE CONTACT?!!!!

Frustration. Fear. Reality.

My reality is this: My father has probable Alzheimer's Disease. Correction: Early Onset Alzheimer's Disease. You may not know this, but Early Onset is radically different from Late Onset. Late Onset is anything over the age of 65 and is a very slow progression that has much more to do with aging. In fact, when studying the brain, it is a completely different reaction in elderly people than in early onset. Early Onset Alzheimer's (from here on known as EOA or EOAD) is the MOST SEVERE form of this disease. It is the fastest progressing with the least amount of possible control factors. EOA starts as early as your 30's or 40's, but up to age 65. Most EOA starts in the late 40's and 50's. EOA makes up for only 3% of the 5 million cases of Alzheimer's Disease in America. Yet, in a family where the father was diagnosed with EOA, 5 out of 6 of his children carried the same mutated gene and ended up with EOA also. My father has 2 biological children....myself and my brother in North Carolina who hasn't spoken to the family in quite some time and won't return contact. As a child of someone with EOA I have a 50% chance of carrying the same mutated gene. If I carry that gene I have a 100% chance of developing EOAD. That feels like a death sentence.....a horrible one. I want to grow old gracefully. I want to hold my grandbabies and know they are mine and watch them grow. I want to ride off into the sunset with my husband. I want to see more of this world than Northwest Arkansas!!!!! (I was born and raised in the same small area where I've been for 32 years.) This may sound selfish in the face of it all, but this is just some of what I'm dealing with and I'm throwing it out there. I try to stay focused on getting the best care for my dad and still being a good mother and wife in my home, plus trying to make every day count....and for the most part, I DO stay focused on those things because there is no time for feeling sorry for myself or questioning the future. I know the Lord has my future in His capable hands. My favorite verse has always been Jeremiah 29:11, "For I know the plans I have for you, plans to prosper you and not to harm you, but to give you hope and a future." I'm clinging to that verse now more than ever.

In the face of the negative, here is some positive:

My father read along while my daughters read him some children's books today. Some of the words he was confused about, but he did good for the most part. We've been on a few outings lately since my grandma has been visiting and I've been able to capture some memorable moments, which I will now share.....

We took a trip to the park today....boy was it hot!!! There are some beautiful flowers, though, and the water was flowing over the bridge (right background) from all the recent rain.

Grandma and Dad got a kick out of watching the girls play (which you can see more of on my other blog).

Dad and Grandma watch the girls as the play in the freshly "cleaned" creek.


Enjoying ice cream....Grandma's Treat!!! :0)
The best kind of treat.....
I love the picture above and the one below. I think they are now my favorite pictures of my Dad. Above, he looks like a normal grandpa enjoying his grandkids and some good, old fashioned strawberry ice cream.
Remmy caught this picture....I need to remember to thank her. I love my family so much!!!


Love,

Jerri

Eagle Watch and Grandma Comes to Visit

Dad's been out and about more. Grandma came to visit and we went to Eagle Watch Nature Trail, which got him out and in the fresh air. It was an impromptu outing due to all the rain that has been here for so long. Friday evening he and my mom came to Jaslyn's kindergarten graduation. He seemed to do very well, but they didn't stay for refreshments.

Having grandma around has been a HUGE help!!!

Today (Mother's Day) we had lunch at my parent's house where one of my brothers along with his family and one of my sisters and her family were there. It was a lot of people with many different conversations going at once. Way too much to keep up with for Dad. He got a little strange at one point, so I took him outside for a bit of fresh air and calmness, then he seemed to do fine. What's really hard is that my siblings and their families intentionally avoid him. It makes me SO angry!!! My sister feels sorry for my mom and wants to put my dad in a home. (This is her step-dad, but has been so since she was 10-11 years old.) She says it might be different if it were her dad.....she has no patience for him and admits it. God grants what you need when you need it, but you need to ask Him for it, too! Grrrr. I know, not everyone handles these situations the same, and I do love my sister, but it's frustrating to try and explain things to someone who only sees him a few times/year. He's sick. It's not his fault. You can't hold past mistakes against someone who has no recollection of those mistakes. The time is now, we have right now and that is it. Why dwell on his past character flaws when right now he is so loving and caring and affectionate? He's not the same person he was, which has made it much easier for me to help care for him.

Sorry about the tangent, there. All in all, things are going well, or....at least as expected and not a whole lot worse.

Does anyone else share these frustrations???

Just a Quick Update

Dad is doing okay. He had some really good days last week, but has seemed confused a lot this week. He's out and about a bit more- around the yard, down the road to our house, out to help us with the horses some, so I know the sunshine and fresh air are good for him. This is one crazy, hectic week at the Dalrymple household, so posts will be few and far between, if any other than this one. Next week we should see a return to some semblance of normal and the pace slow down a bit. Ahhhh....I can't wait.

I just wanted to give an update, in case anyone was wondering or worried.

Please keep praying!!

Jerri

Good Days

I convinced dad to go for a walk with us to tend to the horses the other day. It was a beautiful day....much too beautiful to be cooped up inside! :)

Though he didn't understand why I was taking pictures, every time he noticed the camera he would stop and smile at me. LOL He used to work with horses in his youth and talked about it quite frequently in recent years. I thought being with our horses would jog some memories, but it didn't seem to. He held the lead to the tamest mare, but didn't do much more than that. He wasn't afraid or anything....just not sure what to do.
Walking home across the 'back 40' on our place, he and Junior enjoyed seeing who could spot the most turtle heads in the pond and then the frogs that were jumping from the bank into the pond as we circled round.

He had a Dr. appt. on Wednesday, although he had to see a diff. doctor since his was still out sick. They put him on some anti-anxiety meds and a memory patch that he wears. The last few days have been much calmer and more pleasant for all of us, especially him. :0) No more "shaky-shaky" and he has successfully learned how to call me using the speed dial. He can only call me, but that works since I always have my cell on and can always call someone else for help if I'm not close by. For the most part, I'm trying to stay closer to home, or at least not be gone for too long of a time period. He didn't eat lunch on Saturday (I was working, but hubby checked on him). He thought he had, but was starving when my mom got home from work, and she found his bowl of raviolis in the fridge, untouched. He's gotten VERY picky about what he will/will not eat. Nothing crunchy AT ALL (he soaks his cookies under the running sink faucet, then shoves them in his mouth), and no breads. It makes it hard to get his nutrients in, but hopefully with the new meds some of that will lighten up.

I met a woman today while I was working that had some different ideas on healing and medicating. She mentioned getting him some oxygen ( the kind you take to oxygenate your blood) which makes sense, but I'll have to research it further. She also mentioned some other more off the wall ideas that left me.....well, bumfuzzled to state it as clearly as I can. LOL :0)

I guess I better go and get some rest so I can tackle this next week with some fervor!
I'll post again soon and thanks to all who read and pray for us!!! It truly is working. I could feel the power of prayer wrap itself around me the last few days of the week....my stress levels were lower than even the average day would leave me, and the girls and I worked like a well-oiled machine. I couldn't do that without the power of the Almighty....and prayer warriors like you. Thank you again, from the bottom of my heart!

Love,
Jerri

Another Import

Posted April 14th, 2009, at The Dalrymple School Among Thorns.

My dad is getting worse....rapidly. This weekend he began having "spells" in which he starts to shake uncontrollably and cries...usually asking for help from my mother or I and reaching out his hands for us to hold. I've discovered that if I look him in the eye and get him to concentrate on breathing in through his nose and out through his mouth over and over again, the spells are milder and don't last as long. Unfortunately, they occur more and more often.
His dr. appt. didn't happen. By this, I mean that we got up at the crack of dawn, got to the dr.'s office early, sat and waited...then waited some more...only for the receptionist to inform us that the dr. called in sick. Go figure. We are taking him back tomorrow morning (Wed.). I truly hope the dr. can and will help. If not, then the pursuit of another dr. will begin.
My brain is jam packed with all I've learned in the past few days...all the research. I've had to sit my children down and try and explain this incurable disease to them....which is so hard to understand at their ages. However, they've come up with some great ideas on things we all can do to help. My girls are precious.
I'm having constant headaches....a sign that my clinical depression is surfacing again. That means I need to make a dr.'s appt. for myself in the near future. It's been a couple of years since I had my meds checked and I know that life changes and upsets can trigger my med-controlled chemicals in my brain to be altered. Constant headaches, wanting to sleep a lot, disengaging from my world....these are the symptoms I've learned to watch for. I've been battling clinical depression for 11 years. I've used natural/herbal meds for some of those years, been med free for a few, but for the last 5-6 years I've been under constant medication...and too afraid to try and get off. I've also been through a lot of counseling on/off and know that I have a firm grasp on how to care for myself and the signs to watch for. I recently learned that suffering depression in your life increases your risk for developing Alzheimer's....my dad suffered from it as well as my biological mother who has mental disturbances still. My genetic gene-pool seems rotten and stagnant, eh? My poor girls.
I'm now checking on my dad multiple times daily....worried about him having a spell while home alone. I set their phone to have me on speed dial....which means him pressing 'dial' and the #1....but he thinks he can't do that. I'm going to have him practice it. I found him coloring at lunch time today. That made me proud! :0) He says he did some reading, but I can't ask him what or he will have a "spell". Questions seem to trigger the spells as well as choices (like what to eat or wear). Sometimes nothing triggers them, though. They are like panic attacks.
I'm grateful that over the past 3 years the Lord has brought me so many great friends. Friends I can truly call on at any time and for any reason and will drop all and come running. I've not had to do that a lot, and it's hard for me to do period, but knowing they are there and that they care so much is very comforting. I'm sure the near future will require me to lean on them more than I care to. I feel like a bottle of soda that is constantly shaken up and ready to explode....not angrily, mind you, but the tears, sadness, mourning....they come in waves. I'm not used to being so emotional so often. Every time I leave my dad I cry. I worry about him. I'm scared of losing more of him than I already have. I'm sorry for him that he is enduring this at the age of 59. I'm sad for what this means for my girls and our family. However, it does have some positive effects on me. I'm now more determined than ever to LIVE ON PURPOSE. I want to make memories.....have fantastic memorable moments with my father, and my family. I want a strong memory bank to draw from should I ever face this. I want my dad to have good recent memories to concentrate on. Much of his life and childhood were filled with harshness, so now he needs the sunshine.
Some ideas I/my daughters have come up with are:
-Take him fishing (he used to love this)
-read him a chapter/day of a great book (like Tom Sawyer)
-take him on lots of walks, maybe mushroom hunting with all this rain we are having
-pull out the old round-table and listen to his (and consequently my) old favorites
Most of all, I want to make him smile as much as possible and make him feel loved. I want to take many pictures and create a memory book for him to look at often. Something to help him live in the present (or most recent past).

I want to thank those of you who are bothering to read this-to listen while I attempt to empty some of the raw emotion and frustration of this disease. Please continue to pray for my dad and especially my mom, who bears the brunt of this. She is such a wonderful woman and a great caretaker, but none of us are perfect and I can only guess at the toll that this is taking on her health. I'm thinking of starting another blog where I can post updates about my dad's illness and other's can share of their experiences as well. I'd like to keep the "Dalrymple School Among Thorns" a happy place.....a place to hide, perhaps, on the really bad days.

Thank you, all my friends. I love each and every one of you.

Jerri

Imported Post from my other blog

This post is being imported from my other blog, The Dalrymple School Among Thorns. It is from Friday, April 10, 2009.

This is not a feel good post, nor a happy one. I'm sorry, but if you feel the need to stop reading at this point, I will understand. I beg of you who do continue to read, though, to pray....fervently, and offer whatever information you may have in the comments.

My dad. I will be blatantly honest and say that he has never been well put-together. He's been a pathological liar for far more years than I realized (until I was about 26). He created much of the strife in our dysfunctional home. However, a few years ago he began having "spells" at work. After many of these, and much time off work, the doctors began to suggest they might have been small strokes. It would be nice to believe that were true and simply have the answers, but I'm not convinced. In the last couple of years his memory has become extremely troubled. This started shortly after I confronted him about a lot of lies and mistreatment of family members. For the first time in my life, he admitted a few issues....laying the blame on his horrible childhood. He, indeed, had a terrible upbringing, and I know it to be true simply by the fact that 3 of his siblings (out of 4) who were raised by his father and mother (the youngest was an "oops" and was only 6 when their father died) were mentally "off" as well. Just odd, they are/were. Strange stories and recollections of terrible beatings....all sleeping in the cellar as children. Anyway.... my dad received counselling for a short period and I thought things were going to finally start "normalizing," but I was wrong. The mini strokes followed. His family doctor of 20 years kept insisting there was nothing wrong with him, other than him being his normal (story-telling) self. This made it difficult to feel sorry for him. Really difficult. During this period he was forced into early retirement. Financially, that was quite draining since he was....56, I think? So, finally, my mom (step-mom, but mom for all intensive purposes as she raised me) applied for disability. The doctor that "examined" him (asked lots of ?'s) at first thought there was nothing wrong with him, but after a bit realized he would get this "tick".... a faraway look in mid-conversation. She said she thought it was from the mini strokes. She gave us hope that his memory loss would not get much worse, if caused by strokes. If it was Alzheimer's, it would get worse progressively. His mother has Alzheimer's. Well....in the last 9-10 months since he saw that doctor he has gotten horrendously worse. I could give examples all day long, but he's becoming a danger to himself and that's most important. We live just down the road a bit from him, which works out well when we aren't CRAZY busy b/c I can sort of keep an eye on him. He used to walk up and down the roads all day...just getting out and hoping to run into someone to talk to. Now, he mostly stays home and sleeps....and eats. He will eat his lunches that are for a couple days all in one day b/c he doesn't remember eating. My mom has to work during the day. She has to. It's not an option. She's nearly 58 and my dad will be 60 in June. They cannot retire anytime soon. In order to be "officially" diagnosed, my dad needs an MRI. That's about $4,000.00. They have no insurance, since my dad was forced into early retirement by his company and my mother's employer does not provide insurance. With disability, you have to wait one year before applying for Medicare. Hopefully he will get that in June and be able to go for the scan....which will, again hopefully, tell us something. Anything. Just so long as we get some answers.....preferably with treatment solutions.

Meanwhile, my dad is slipping away from us so quickly. Despite whatever bad might have occurred in my childhood (he was never physically abusive or anything like that), he is still my daddy and I love him. He's really all I have left as far as family (outside my husband and children). He and my step-mom, whom I worry about constantly as her health is not that great and now she is the primary caretaker of her husband, who has become more like a child. My siblings...we've never been close. Even as children. Some of them are quite messed up, due to my birth mother's abusive ways. Some just got fed up. It's understandable. Most don't live close enough to really understand all that is happening with dad and they don't call or visit. I feel gut-wrenchingly sorry for them because they have no idea how serious things really are. At this point, we are trying to avoid putting him in a home. It's very hard when you have 3 active children (one is a teen and one is almost a teen), homeschool, and work part-time...plus having a farm. I need to find ways to spend more time with him. I've suggested he do cross-word puzzles or word searches, but he won't. I don't think he can, really. But he doesn't even try. He says he reads, but when I ask what book he's reading he simply says that he has many books to read.

Does anyone have any experience like this? Is there some way that it's NOT Alzheimer's? He seems to know when a "blip" is coming. He will stop mid-story and say, "Here it comes," and then he's forgotten what he was saying. That doesn't sound like Alzheimer's to me. But I'm no doctor, either. He talks openly with my husband about his fears of losing his mind...when they are alone. He won't talk about it with me. When I ask questions he says he's fine, or he's getting better. I think he's trying to protect his baby girl. I know he loves me dearly, which makes this all the more heart-breaking.

If you have any advice, experience, anything....please help. If you don't....please pray....with urgency. Please.

Thank you.

Jerri