4 Months of Info

Has it really been 5 months since I updated the blog? I have some good excuses, but what it boils down to is that somedays I feel like the same thing happens over and over and there is no reason to keep saying it out loud or in the blog. There have been alot of out of the ordinary as well. Quick update: Mom had hip replacement ( yes, that means she and Dad both were down for a few weeks), but she has recovered and is the energizer bunny again. Bo started and completed his first semester at Appalachian State - he loves it. LeaLea started high school and is playing Junior Varsity Basketball - she is the team high scorer (and I must say, THE BEST). Big T is still taking care of his Mom and Dad (not working). Abbie started Kindergarten - and is thriving. We sold our house - whew. My 6 month mammogram came back clear. hm....I think that about covers all the big news.

Dad is still holding his own. Good days, bad days. Mom was able to get a grant through the Alzheimer's Association and has someone coming in 1 day a week for 4 hours. This gives her a chance to get out. Although I have to say, I think she has used it to Christmas shop, grocery shop and doctor's visits. we need to get her out enjoying herself.

Some days are an uphill battle. It's funny how the big things are easier to handle and something small happens and I fall apart. I've said it before, some days I get it right, some days I don't. Most days I just try to make it through the day without crying or fighting back the tears.

Be kind and make good decisions.

81st Birthday

We have been in full on party mode here at the G-H house this week. Daddy turned 81 today, but we have been celebrating since Friday. His sister and brother-in-law came to see him and Leacie started his birthday cake on Friday. He LOVES ice cream, so she and Mom made him an ice cream cake. It takes 3 days to finish because she has to make it 1 layer at a time. Ice Cream, fudge, ice cream, caramel, crushed up oreos, whipped cream, maraschino cherries (alot of things we all shouldn't be eating) - somewhere Mom heard it called a "better than sex cake". Believe me, it was worth every calorie and belly ache we had. On Sunday, we had a big lunch and sang, "Happy Birthday!" and had his cake. This year he is totally unaware it is his birthday. He would smile sometimes and shake his head, but for the most part he would just give that blank stare like we are all speaking a language he doesn't understand. He is getting less vocal everyday. Saturday he was weak and slept alot (days and nights are mixed up again). Terry helped Mom change him once and he just slumped in Terry's arms and wouldn't stand up. On Sunday he was a little stronger, but would not feed himself breakfast or lunch. Mom an I took turns feeding him while he watched and listened to all the grandchildren around him. He wouldn't hold the spoon or anything UNTIL...

Leacie put the cake in front of him and we all started singing "Happy Birthday", well that stinker reached over and stole Robert's fork and was holding it like he was waiting on the kids to finish and then he was going to dive in! We all laughed and laughed! So now, we have our story for Daddy's 81st Birthday!

Be kind and make good decisions!

Folk Festivals and Memories

This weekend is the Mountain Dance and Folk Festival. If you grew up in WNC, you've probably heard of or been to this at least once in your life. Me, I've been many many times - but most of my memories are of meeting at the Westgate parking lot AFTERWARDS, everyone jamming together, taking a little nip out of bottle into the wee hours of the morning. We also were at the Mountain Youth Jamborees, Bascom Lamar Lunsford Festivals at Mars Hill, Fling Dings and of course the Shin Dig on the Green. My Dad and brothers played at Mountain Winderness camp ground in Burnsville on weekends during the summer, every holiday has a soundtrack...I was lucky to grow up in house filled with music. Bluegrass to Classical to Rock to Pop to Folk, we had it all.

When I think of my Dad's life the two things that stand out besides family are his military service and his music. I wish he could enjoy the Folk Festival just one more time....

Be kind and make good decisions.

Manic Monday

The sun is going down, sounds like storms are rolling in and I am finally sitting with my feet UP.

Poppa has not had a good couple of weeks. He is getting weaker and more feeble everyday. I told my sister Saturday that it was the worst I've seen him. Saturday and Sunday he would not open his eyes and it was very difficult to move him. Abbie spent the night on Saturday and she could not understand why DanDaddy wouldn't open his eyes for her - "He always does!" He is a little stronger and more alert today but he still has trouble responding. I'm hoping he will sleep tonight and be even better tomorrow. The sleep pattern thing is starting to really affect my Mother. I see her getting weaker and more feeble as well. She is need of some major surgery on her hip, but will not plan anything because of Dad. Hard head Ayatollah.

The kids and Terry being here during the day has thrown me off my schedule. We've kept Dad on his, but mine has gone all haywire. Hopefully this week I can get it together and answer emails, update web pages and get back into my comforting housework routine. It will sure help my mood. Being a little OCD (yes, I said a LITTLE) I hate flying by the seat of my pants. Makes me feel all scattered.

The quiet has set in, so I am going to enjoy it for awhile.

And remember, be kind and make good decisions.

Seperation Anxiety

It's been a busy surreal couple of weeks at the G-H House. I went to college orientation with Bo last week. God help me come the third week in August, one moving into a dorm and the other starting high school. I may be medicated for about a month! Are you kidding me? They had us drop our student off at the dorm (he had to stay on campus, I stayed at the Hampton Inn) to check in - and I mean drop off. I drove up he got out and they waved me on. Well, people, I cried as he walked in! I would see him in 15 minutes across campus for the opening session and I CRIED! He's in Hilton Head with our church this week (just until Saturday) and you would think he's touring Europe for the next 8 weeks...I am a wreck. Part of the reason is LeaLea has stayed with my sister-in-law and mother-in-law for the past few nights so I don't have her to smother. I hope I get a grip on things before he leaves for real....

On top of that, Dad is sick. It is just a cold - mild fever, cough, congestion, but he looks and feels horrible. At this stage in his disease, even allergies can mean a hospital visit, so we are hydrating, saline up the nose and trying to keep him cool as possible in this heat wave. I looked at him tonight and the reality that he might not have much time here with us really hit me. He is beginning to look like the people at the end I've seen in the books and films about AD. Now, don't read too much into that, tomorrow he may be his shiny self or what has become his shiny self, but tonight he truly looks frail.

If I step back, I think Dad's weakness is part of the reason I am clinging to the kids so much lately. That scares me. It's like after 911. Every Mother I knew kept her kids in her sight for weeks. If something goes wrong I want them within arms length so I can grab them.

I usually have a pretty good outlook about Dad and his illness, but with so much change happening around here with the kids, Big T's job, trying to sell our house - I think I've used up all my positive attitude. I am ready for a big ole pity party. Bring on the wine and whine!

So, I am going to stop before I get really ugly...and try to
Be kind and make good decisions.

Mar

Friday? Who Cares?

Today is Friday. That doesn't mean much to me. All my days are the same, except Saturdays and Sundays there are a few more people in the house. Well, not completely true, but close. Big T is home during the day right now. He was or is in the process of being laid off from his job. Just another bit of excitement to my life right now. Between Dad, Ty's graduation, Terry's job, my father-in-law and just the day to day life - I'm asking that question, "How much more can I stand?" T's Dad is having TIA's (mini-strokes) and it worries me that they are a precursor to something else. So, maybe God allowed Terry this time off so that he could spend more time with his Dad?

We are still dealing with cleaning out and sorting through the old house. I can't wait to get out from under the mortgage and utilities at that house. It would be a big relief for us. I cannot believe the amount of STUFF we have accumulated in 22 years. You could fit everything we need in the back of T's truck and haul 4 or 5 tractor trailer loads to goodwill and the dump of the things we don't need or haven't even seen in 2 years. Getting it done and sold will be a very happy day around here.

Poppa is on an up cycle right now. He has slept good for two nights, fed himself breakfast and LUNCH for two days and will answer simple questions. This disease is perplexing. You would think that if he was unable to feed himself for weeks then that ability was just lost, BUT NO! He might not pick up the spoon for 10 days and then suddenly one morning he's feeding himself not only his cereal, put picking up the cup to drink juice!?

His Boo Bear is still hanging around. He has not taken to it like I thought he would, but he doesn't oppose it being beside him in bed or on the table by his chair. He may just need more time for it to become familiar.

The research for the atomic testing that he participated in has kept me busy. He was in Nevada during the Buster Jangle series of tests. He was part of the troops who observed the Shot Dog that took place on November 1, 1951. It is very interesting and I wish I had asked him about his time in the military when he still rememebered.
So that's my advice today. If you have loved ones who are older - ask them questions, write down names, dates, adventures. Because things you don't think are important today, may mean the world to you tomorrow.
Be Kind and make good decisions!

Poppa and the Boo Bear

We recently finished watching the Alzheimer's Project that was on HBO - or should I say, I finished watching it. There was at least one segment that I would not let Mother watch. I thought it would be too hard for her to see the condition of some of the patients we were introduced to. Even though Poppa is as bad or worse than many of them, it was different being on the outside looking in. What I'm used to in my own home, was difficult to watch on TV. It was interesting to see how other people accept the condition of their loved one. Every emotion I saw, I have experienced - anger, confusion, fear, sorrow and wondering why. It also made me start to wonder about my future, my siblings future and my children's future. My Dad technically has vascular dementia with Alzheimer's - the vascular dementia is caused by damage to his brain from lack of blood/oxygen. He has a portion of his brain damaged that is about the size of a quarter that can been seen on a scan. So, we aren't in as much danger to inherit cognitive problems as most, but the possibility is still out there.

The thing that shocked me the most in the documentary was learning about two of the individuals professions. We always hear about how we are supposed to be exercising our brains as much as our bodies, which I think is true. But, it will not keep you from getting Alzheimer's. One of the women was a Physicist and one of the men helped develop the computer systems we use today. Highly intelligent, brain exercising people. The scientists have concluded that the best thing we can do for our brain is to take care of our body. If we are physically fit, our brain is more likely to be. I guess this means I need to get my lazy behind up and start moving more. It will be good for my brain and will probably keep me from having a relapse with my cancer.

I started something this week with Poppa that I'm hoping will work. He has a new friend. We call him Boo Bear. He is a bear that one of the grand kids had or someone gave Mom around Halloween one year and he has been sitting around. We are putting him in the bed with Dad and sitting him on the table beside his chair during the day. I thought it would be something he could get used to seeing - something familiar - and it's soft to the touch - something comforting...I am hoping that it will eventually be an item that will help calm or comfort him. This was a great tip I received from someone else who is caring for an AD parent. The community of caregivers is wonderful. What works for us, might work for someone else so it's worth sharing any ideas you have.

Time to start this Tuesday - Be kind and make good decisions.

Acceptance

Watched Maria Shriver on GMA this morning and they showed clips of when she testified before Congress regarding Alzheimer's and how it has impacted her life and the many other lives around our country. Every time I see it, I get choked up when she tells of her Father attending Mass everyday and still knows the Hail Mary, but does not know she is his daughter. My Mom and Dad have said the 23rd Psalm together every night for years, when he was still speaking, he would say it with her every night even though he didn't know her, or where he was at. She still reads scripture to him and says the Psalm and most nights he just lies there with his eyes shut but there are some nights he mouths some of the words or watches her closely until she finishes. When my granddaughter is here in the evenings and it is time to start Dad to bed (which is a 30 minute to hour) she always asks if she can stay and "pray" with DanDaddy. She waits patiently until we get him in the bed and then she comes in and holds his and NahNah's hands and says the words she remembers. She is learning the 23rd Psalm this way. She then kisses him and always says, "don't let the bedbugs bite!" - which makes me sad because she used to just say, "don't let the bugs bite!"

Another thing that I always relate to when I she speaks, is about how she and her family have learned to accept who her Father is now, not who he used to be. My Mother and I both talk about that often. Mom says it's like he's a different person. She still loves him, but when she reminisces about the past, she doesn't think of the person sitting in the chair next to her as being the one in her memories.

Many families with sick loved ones have to work at getting to that place of acceptance. When you learn to accept (one of the definitions on dictionary.com is: to regard as normal, suitable, or usual) then you can love and be happy with the person. I know a sweet woman who's husband is very sick and she still talks to him about the bills, the yardwork that needs to be done and many daily things she used to talk to him about. He is no position to be able to do anything about the yardwork, etc. and in many ways it justs give him something to be worried and obsess about. She doesn't realize that she is only making herself and her husband more unhappy. She has a new normal and needs to recognize that.

I don't do everything right while caring for Poppa. Right now, my job is to keep him happy, comfortable and as healthy as I can. Somedays I do all three and somedays I can't even get one - but I accept that.

Be kind and make good decisions!

Tornado Warning here?

Tornado Warning here? Yep, that's right, we had a tornado warning around 11am this morning. I was going about my morning as usual when LeaLea texted me and said, "Get in the bathroom!" I thought she had LOST her mind. But after turning on the TV and getting additional texts from Big T and Robert I realized there was something going on. I wasn't as concerned (as I probably should have been) because the rain and wind were both minimal here, but I did start to consider where I should take Dad if the weather did turn bad. Where can I put a wheelchair, oxygen tank, Mom and I that will be safe but easy. The hallway runs down the center of the house so that seems like the most logical place. LeaLea said they made them go into the bathrooms. Not the whole school, just the special ed kids that she works with. The rest of the school was sitting in the hallways. In the end, nothing bad happened, just a little excitement to screw up our routine.

He's still in there

Been a crazy couple of weeks here at the G-H house . My sis came up this past weekend to stay with Dad so that I could go to a basketball tourney with Leacie. It was nice to get away for a few days in a hotel where I was not expected to cook, clean, make a bed, change a diaper or feed anyone. There was a beautiful courtyard with sofas, tables, a fountain, a gas fireplace and big comfortable chairs that I sat on for 2 hours Saturday, all alone with a book in the warm sun. How absolutely relaxing and rejuvenating! I also laughed until I hurt. The "Basketball Moms" and I gossip and tell tales all weekend. It was so nice to talk to other Moms who are going through the same things with their daughters being teenagers and getting their perspectives, advice and warnings.

Apparently Dad was not doing well this weekend and it was difficult to move him from place to place. I hate not being here and my sis having to deal with everything, but I am learning that when I do get away, when I come back, I am more patient and have a renewed energy to handle situations.

He is doing much better today. I think we are battling allergies, because of the way he was weak this weekend, his runny nose and his eyes are swollen. I was talking to him at breakfast about his eyes and I told him they look pitiful all puffy, red and watery - He looks at me and says, "At least they still work." I laughed and thought - true. It is moments like these that I see my Dad is still in there. His quick wit and smart ass comments still surface. A full sentence with 5 words! He may not speak again for days, so I am going to cherish his smart statement. A good lesson - take every little thing he gives me and cling to it. Today it was 5 words, tomorrow it might be a smile, another day it might be a pat on my face. Hold everything you get dear.

Be kind and make good decions.

Cartoons and Ice Cream Sandwiches

A good day here at the G-H House. Got lots of laundry and a little housework done and Poppa was in a good mood. This afternoon I decided to sit down and watch the mid-day news with him and while I was surfing through the channels (well ya never know what else might be on more interesting than WLOS Noon News) I landed on Cartoon Network right as the phone rang. I got up answered it and handled whatever the caller wanted and when I sat back down I noticed Poppa was grinning?? He was watching Tom and Jerry. This man who has not cared about TV for almost two years was grinning at Tom chasing Jerry and the misery this little mouse was putting the cat through. I went and got him an ice cream sandwich to eat and he watched the whole time. After he was done with the ice cream, I left the show on and sat watching him until he closed his eyes and went to sleep about 15 minutes later. Amazing. So, I'm going to try it again tomorrow. Let's see if the colors, noise and sound effects hold his attention again. I'll let ya know.

When I was putting him to bed, I was oohing and ahing over him and he was just staring into my eyes and I talked about his pretty blue eyes - I then asked him what color Granny Martha's (his Mom) eyes were and he thought for a moment and said, "I think green." Now, I am sad to say, I don't remember. Maybe that's where I got my green eyes from or maybe he was just saying green because of me. I'll have to ask Mom. It made me think though, I am the only one in the family with green eyes. Tre, Rob and S all have blue eyes. Mom has greenish blue eyes and Lea has brown eyes and Bo's eyes are goldish/amber colored. Hm...

Talked to the local Alzheimer's Association today to see about getting some respite care from time to time. Trying to get around the fact that we are all living together so that Mom will qualify for someone to come in from time to time. Hey maybe she and I could go to the movies in the middle of the day or have a mani/pedi or heck she go her way and I go mine. I have my kids to get me out of the house for basketball games, functions at school, etc. The only time my Mother leaves this house is to go to the doctor, grocery store and Target. AND that's the way it's been for over 4 years. I would be in a padded cell, heavily medicated if that were me. Which on some days doesn't sound too bad! LOL!

Time for the kids and I to cuddle up and watch Ghost Hunters.

Be kind and make good decisions.

Mar

GiGi Day

Today was a GiGi day. I am GiGi, at least that's what my Granddaughter (and many other people) call me. She came home with us after school while her Mom ran some errands. I love GiGi days. Having this happy little girl running around asking questions and saying some of the most HILARIOUS things is a wonderful way to spend an afternoon.



We attempted to make some marshmallow treat eggs that I had seen on TV - they didn't look exactly like the example, but they were easy to make and we had a good time doing it. Abbie took it very seriously. Abbie loves to cook so I try to have her help with supper or make something special when she is here.








Another reason I love GiGi days is Dad is always in a good mood when Abbie is here. I told her when she came in that he was in the "Grumpy Face Club" and she immediately went over and started loving on him. When he smiled she said, "See GiGi, he smiled for me. Now he's in the "Happy Face Club"!" She has always been so sweet and loving to Poppa. Her Mom works with special needs kids and it has taught her a wonderful gift of acceptance even at 4 years old.






Poppa is in his "down cycle" right now. This one seems to be lasting longer than usual. Everyday I wonder, is this the new norm? He is having many spasms/tremors which make it difficult for him to stand, eat and even sleep. The big problem for Mom is the sleeping. She insists on being right beside him all night while he is awake grunting, groaning and jerking. She doesn't sleep in the same bed, he's in a hospital bed, but she is close enough to reach out and touch him during the night. We give him Trazadone to try to calm him down but on his bad nights, it won't work. I worry he is going to get so tired that he ends up having a heart attack or stroke.

I am going to head off to watch the Tarheels...G'Night all.

Be kind and make good decisons!

Another Day Another Post

Good Morning! After reading my last post I realized I probably should wait 8 hours after anything traumatic happens around here BEFORE I start blogging...what an emotional wreck I was that night. What we go through for and with our kids.

My sister came to stay with Mom and Dad the weekend of the 20th and my brother helped out this past weekend so that I could go to Leacie's basketball in GBO and Wilkesboro. It was the first time since Dad has gotten so hard to move and being the control freak I am, I left them pages with our daily schedule and instructions. I was so afraid he or she might be insulted but hopefully it made things easier. Both weekends seemed to have gone really well, and I know Mom enjoyed having someone besides me to talk to. When I got home last night, I just loved all over him. It felt like I had been gone weeks instead of days. I understand what my sister sees when she visits. Just being gone two days made me realize how frail he is. I was so touchy and gooey, I think I scared him a little!

Dad is in a grunting, moaning, puffing, sucking his teeth mode today. It is a one of the symptoms of his vascular dementia/alzheimer's that bothers me. He can get extremely loud and at times it can go on for hours. Just listening makes my throat hurt and exhausts me. When I talk to other caregivers, the noises and bathroom issues are the big ones people want ideas to cope with. We gave him trazadone last night because he was wild eyed and nervous which kind of puts him out of it the next day.

Last week I was able to take part of a day that was just for ME. When I left my job last April, the owners gave me a gift certificate to a spa. I went last Thursday and had a facial, massage and manicure - HEAVEN. Now, if I could only figure out how to afford it once a month...hm....

Please continue all your prayers, good thoughts and emails - I appreciate it more than you know.

Mother/Daughter

Tonight my heart is heavy. The daily struggle of caring for Dad has become routine but the emotional demand changes so much day to day. Mothers can relate to the roller coaster. There are days that go smoothly, there are days that I feel like I have bargained with him all day, there are many days I just give in, there are days you just let it go because nothing is going like it should. I remember having the same emotions and exhaustion when the kids were little. So what's harder? Being a daughter having to do things for your Father you never anticipated or being a Mother and being unable to do something for your child.

I said my heart is heavy. Tonight it isn't because of Poppa. Tonight I had to watch my child come to terms with a big disappointment. No details. I have watched this child go through so much in their short life and never be down or despondent. Tonight my child cried. So, here I sit trying to figure out how to fix things. To make the situation okay. But, this is not something a Mother can change or repair. I have to let this go. I will still offer encouragement and comfort, I will try to make it better, but I cannot change what happened. So, that's why I sit here at midnight crying and doing my best to keep from crawling into bed with my baby and holding them all night.

So, what's harder? Watching the man I thought was invincible slowly wither away or watching my baby and knowing that this is not the last pain they will experience or the last time they will be let down.

I think I've lost the battle -I think I'm going to crawl into bed with my child. Goodnight and blessings.

Cantankerous Rainy Days

Woke up tired, which is not a good sign and when I went to get Dad out of the bed he cussed me and told me to go away...What a way to start the day, huh? So, I put on my preschool teacher voice and face and talked him out of the bed and into the bathroom. He keeps trying to find someone to be mad at all day. Mom was bragging on his pretty blue eyes and he told her to go away and quit making fun of him. I was moving him from the wheelchair and he yelled at me that he couldn't carry me and him. Mom and I laugh and then he gets even more mad. It makes for a difficult day when everything is a fight -

BUT, he is cussing, yelling, and fussing at us, which means...he's speaking. Days like today you have to watch him like a hawk. He'll take off his oxygen, won't leave on the mask for his nebulizer treatment and he's likely to spit out any meds when you turn your back. He is definitely is in his terrible twos today.

So, pray for patience and that we can keep laughing over top of his head at each other. Because according to him, "He didn't ask for this s**t!"

Spring Forward

Such a beautiful warm spring day and I am sitting here still in my pajamas on the computer. I was up last night until after 1am waiting on Bo to come home. He's a great kid and wasn't out doing what I probably would have been doing at 18 - but I can't sleep until he's home safe. Did anyone else's Mom used to say that? The Ayatollah Ole Meanie used to say that to me all the time and I would think, "well that's stupid"...now I'm saying it.

Poppa is not having a good day. No talking, no eyes open, drooling, snoring and grunting. I thought he might be running a low grade fever last night, but today it is normal. I made/encouraged him to walk from breakfast and to and from lunch, but I had to keep reminding him to open his eyes and lift his feet. Days like today, I thank God for the gait belt. There is no way I could manage moving him from place to place without it. He won't be walking anymore today, except moving from chair to wheelchair, wheelchair to bed etc. He is having such bad spasms he can't stand up without assistance. He cannot follow simple directions. His body and brain have shut down today. Nothing in, nothing out. This usually means, he has either been over stimulated (not lately) or his body is fighting something. We will keep a close eye for any symptoms that may show themselves.

Going to try to motivate myself to shower, dress and maybe go for a walk with the poodle.

I love you

Today Poppa told me he loved me. I also heard him tell Mom he loved her as well. I cried both times. He was in a "panic" mood today. These are the days he sits around wild eyed, watching us very carefully like he's trying to figure out who we are or where he's at. These are the days that are hardest on me. The days he's sick are difficult, but the days he's scared - those are the worst. I can't stand the thought of him being scared. These are days Mom and I are quiet and spend alot of time touching him and looking him in the eyes. These are the days I Hate. So, in the midst of all this fear, he looked at me and said, "I love you." I pray for him to sleep tonight. He usually tosses, turns and grunts all night after a panic mood day. I moved the head of his hospital bed closer to Mom's bed so that she could reach out and touch him during the night. He doesn't understand why they are sleeping in seperate beds for the first time in 57 years. He asked her last night if she could get in bed with him.
Don't take what I am about to say wrong, but often times I wonder, why is he still here? There's got to be a purpose/reason/explanation AND will I ever know it? So, I just take everyday and enjoy it and days like today when he looks at me with those beautiful blue eyes and says, "I love you" I don't care why he's here. I'm just glad he is.