Sunday, August 31, 2008

Pictures of the family

Our happy bunch of kids. It's been a while since we had a photo session, so I took the chance and the light from the sun coming in our family room to take some pictures. The sad part is that I had 200 speed film in the camera and didn't realize it, so some of the pictures got over exposed. Yes I'm still in the age of film, our digital camera is good for general pictures but for portaits I like film. But anyway I think overall the pictures came out nice and hopefully give you some insight into Garrett, Hannah, and Kevin. --- John

Hannah, Kevin, Garrett




Monday, August 18, 2008

My thoughts about Dad

Let me first say that my Mom is doing well, getting stronger. Every other day, she walks on the treadmill for 15 minutes, and has been bugging me to call her doctor to see when she can go back to her water aerobics class! She has always been very fit and active. She is taking steroids to reduce the swelling in her brain from the tumor, and that wreaks havoc with her diabetes and her sleeping patterns. In a few weeks, she will be off the steroids, and at the end of September will have another MRI to find out if the tumor has shrunk and to see if there are any more popping up yet.

I have had a pretty hard time with my Dad. He has really declined in the last few years, but most noticibly in the last four months. He has been staying in a home since my Mom had her treatment. We bring him home for most of the day, about 9 or 10 am until 6 or 7 pm. Here's our conversation the first time I went to pick him up:
Dad: Well there's my little girl!
Me: I might be your youngest girl, but I'm the tallest girl in our family! (That's how I usually answer when he calls me little or youngest)
Dad: Well now, I didn't know that. (Confused and looking at the nurse): I haven't seen her in years and years!
I just kind of laughed it off and didn't contradict him.
Dad: What grade are you in now?
Me: I'm all done with school now. I'm a Spanish teacher (trying to keep it simple).
Dad: Really? A teacher?
Me: Yes, Dad, just like you were.
Dad: Like I was?
Me: You were a professor for 35 years.
Dad: I was?

When we came out to see them in April, my Dad gave me a bunch of Spanish magazines that he had been saving for me. He used to pick them up everywhere he went and save them in the garage. He knew I had started my Master's degree, and kept asking me when I would be done. So now, four months later, he doesn't remember that I'm an adult, that I finished college, started my master's, that I was teaching Spanish, or that even he himself was a professor. It was shocking.

It's strange, though, what functions do remain. He is able to read from the scriptures out loud every evening. He followed along in the hymn book singing quite well. He can do almost everything himself: put on his seat belt, brush his teeth, eat, dress. But you have to tell him every little step. Here is a typical meal:

Dad: Can I eat now?
Mom: Go ahead, but eat your corn first because the chicken is hot.
Dad: (picking up his fork) Do I use this?
Mom: Use your fingers (it was corn on the cob).
Dad: (Taking a bite) There's no stuff on this.
Mom: Put butter and salt on it.
Dad: Butter?
Mom: Here (pointing)
Dad: (Putting his corn down and picking up his fork)I better see what this is (poking at the chicken)
Mom: That's your chicken and it's too hot so don't eat it for a few minutes. Eat your corn.
Dad: My corn?

You see the pattern. Spoken words have little or no meaning for him. He repeats everything because he doesn't know what we're talking about. We have to point to things. But how do you point to "professor" or "sick"? He's actually quite amusing to listen to, but it gets frustrating at times. He often says things like "I wish I had never been born" or "When do I get to die?" or "I will be dead by next week." Which, naturally, is a little depressing.

The nurses in the home and most other people treat him like he is a child. Like a child with bad hearing. It bothers me, it makes me want to tell them all about his past. I want to put a sign on him that says "TREAT ME WITH RESPECT." They don't know that he ran away from an abusive home when he was 16, rode the rails and hitch hiked across the country, enlisted in the army, attended several prestigious universities while working, served an honorable mission in Argentina, taught Kindergarten in California, received his Masters and PhD while a young father, had ten children, was a tenured professor, managed money to raise ten children and then put every single one through college, served another mission with my mom, etc. That's not even the tip of the iceberg.

I take Dad out for a few hours every day so my Mom can rest. On one of our outings, I asked him to tell me how he met Mom. He couldn't remember. Many people with Alzheimer's can remember things from their childhood or past. I asked him a few different questions, even led him down the path a little way to see if he would remember. But he didn't. That was a little sad. He has better moments, but I would say that about 90% of the time he is as I described above.

I keep telling myself that we're doing the best we can for him, and all we can do is help him be happy for the next few years of his life. And if that means driving him by the church 5 times a day to show him that no one is there right now, well then, let's do it. It doesn't bother me. And I'm enjoying my time with him while there are no other demands on my attention (kids). He's pretty fun to be with.

Does anyone have any experience with Alzheimer's or dementia? I would love to hear some stories and/or advice.

Tuesday, August 12, 2008

I love the beach (for my kids)!

I've decided that there are three types of beach goers: the kind that don't like it at all and just sit in a chair and try to keep sand out of everything; the kind that love it, swim in the ocean, build sand castles, and don't mind the sand in everything, including their swimsuit; and those that fall somewhere in between who like to go mostly for their children's sake. I fall into the last category--I don't LOVE going to the ocean, but I love seeing my kids have fun there. I like swimming and bobbing in the waves, but I don't love the jellyfish or stepping on crabs or shells. I like the relaxing feeling of sitting on the beach and knowing my kids are having fun with little entertainment from me. I love food at the beach, even though it gets a little sandy. It's fun to pop pretzels and grapes into my kids' mouths because their hands are too sandy to touch them. I like forgetting about the usual routines of meals and naps because we are having too much fun to leave the beach and return to that humdrum existence.

This vacation was a real break for me. I decided before I left that I would just take it easy, and make it a really fun vacation that the kids would remember. No stress, no yelling, and suspension of all but the most basic rules of good behavior. No time crunch, just let things come as they may. It turned out to be the most fun I've had in a long time. The only thing I missed was John and Denise, but to tell the truth (sorry my dear) I don't think it would have been so relaxing with John, or with Denise. We would have ended up arguing about somewhere to eat, or where to stop for gas, or I would have been more stressed about keeping things clean or that I wasn't doing enough with the kids, or upset that John was taking long naps while I "did all the work." Or upset that Denise was spoiling the kids or they were sassing her, or she didn't do things the way I normally would.

As it was, we had a great time. The kids played nicely with their cousins that were there (only two girls aged 10 and 14). The highlight for me was our bike ride. We thought it would be a good way to keep the kids busy for the morning, a challenging but not impossible ride to the ice cream store. We thought it might be about 2 miles but we clocked it later at 3.7 miles. As you can imagine, it was very hot and humid. Hannah has only been about a mile at a time on her little bike, so it was a real marathon to her. The ice cream store was closed when we got there, and Garrett instantly dissolved into frustrated tears that mixed with his perspiration. Luckily, a lady at the gift shop suggested the gas station and we went (walked!) there and let everyone pick out an ice cream bar or popsicle. It was a long ride home, but we made it. Hannah was so exhausted by the end (7.4 miles!!) that she forgot to use her brakes when she came down the steep driveway and ran right into the woods, scaring me (and herself) half to death. She wasn't hurt at all, not even a scratch. I had told all the kids that whoever didn't complain on the ride home would get a popsicle. And whoever said nice things about the ride would get their popsicle BEFORE LUNCH! I totally cracked up when they were trying to find good things to say: "That shade on the other side of the street looks nice." "I love these bumps in the path, they make it more fun." "This is a good day to go to the beach and swim in the water." I was really proud of all the kids (though Kevin just rode in the trailer) but especially Hannah pedalling 10 times what we all were on our big bikes. She is a strong little girl! I thought they would all be exhausted when we got back, but within 20 minutes in the air conditioning, they were jumping around just as hyper as ever. Kevin is the only one who was tired enought that when he sat down for a few minutes, he dropped off to sleep! And he didn't even have to pedal!

The kids were amazingly good in the van on the way down, and believe it or not, they were even better on the way home and I drove the WHOLE WAY IN ONE DAY! Yes, 16 hours of driving and caring for my 3 children all accomplished with patience and skill by yours truly. I was so, SO happy to get home and see John and see the remodeled family room. We don't have any pictures of that though, because our camera totally freaked out the last day at the beach and it is getting repaired. Thank goodness we got the 4 year warranty. Here are some beach and bike ride pictures, then I'll give you an update about our moms:

John's Mom is now able to put slight pressure on her foot, so now she doesn't have to hop with a walker, she can walk a little bit. She still can't drive of course, and her car is totalled, so she is still dependant on others to take her where she needs to go.

My mom has regained a little of her fine motor skills, and can read and comprehend a little better now. She has always been a quick healer and doctors are always amazed at how she bounces back after everything. She had planned on taking my Dad on a cruise in October, but she definitely would not be able to take Dad. She still wants to go, though. I am leaving on Thursday to stay with her until the following Saturday. I'm excited to go and spend time with her. My sister says I'll have to give her insulin shots because she can't do it herself. That is making me a little nauseous to think of, but I guess I gotta do what I gotta do. My Dad is getting a little better about staying at the home, now that he has his routines. But he is still really lost and doesn't understand what's going on. I'm just hoping he will still recognize me as his daughter, because I can't bear the thought of completely losing him mentally. He usually remembers Allyson is his daughter, but every day says "It's nice to see you! It's been a long time!" and he never remembers her name, even though she's been there two weeks.

Please continue to pray for us. I really feel the prayers helping me. Did someone pray that my kids would be good and that I would stay sane on the long road trip by myself? It worked!

Friday, August 1, 2008

Mom updates

John's Mom continues to mend slowly. She needs to be driven to the doctor several times a week, and also taken to the store. She has been able to eliminate pain killers during the day, but still needs to take one at night so she won't wake up in severe pain. She has a great attitude about her injury and loves for people to visit. We wish she didn't live so far away, so we could visit her more often.

My Mom went in for Gamma Knife radiation on Wednesday. The doctors are optimistic for her short-term recovery. The tumor is still there, but will hopefully begin to shrink in the next few weeks. In the meantime, she still has a lot of difficulty speaking, comprehending, and reading. The doctor believes this will likely improve as the tumor shrinks.

Unfortunately, the nature of melanoma is that once it has spread (called metastatic melanoma) through the lymphatic system, it is nearly impossible to irradicate from someone's body. It will find somewhere else to concentrate. Chemotherapy doesn't usually work very well with melanoma, and with my mom being almost eighty, the chemo would be more likely to kill her than help her. The survival rate for metastatic melanoma is about 10% living after five years. So needless to say, we are preparing for the end of her earthly life. My siblings and I are all taking a week or two to go out and be with her, to help as best we can, and spend some time with her. I will probably go from Aug. 14 to 22nd.

My Dad has not done too well in the nursing home. He keeps trying to escape and studies maps to figure out how to get back home. He doesn't understand why he can't be with Mom. Unfortunately, she is just too incapacitated to take care of him. Even when my sister brings him home for a few hours, he makes too many demands on my Mom, stressing her emotionally and physically. We are not sure what the next few weeks and months will bring, but of course there will be many changes and I am trying to prepare myself emotionally for those.

Denise and I had planned a trip to South Carolina to rent a beach house with my two brothers and their families. When we found out about my Mom, Denise decided to go to be with her, but only on the condition that I would still take my kids to the beach. My Mom was upset that Denise gave up her beach vacation (they share a great love of the ocean, my Mom was raised in So. California), and she would have been horrified if I made the kids miss it as well. So off I drove with my three crazy kiddos, 16 hours. It was worth it though, we had a great time, and I was able to worry about Mom together with my brothers. While we were gone, John did a little remodelling on the family room. He worked on it the whole week, and did an amazing job. I'll put up pictures of our beach trip and the new family room soon.

We would welcome your continued prayers in our behalf, for all of us. Though I know the eternal nature of my family, it is so difficult to prepare to say goodbye, not only to my Mom, but also to the father I have always known as he declines rapidly without the support of my Mom caring for him. Here are my parents at our wedding:

Love, Lajuana