The day of, the day before

Whew. It's done. We took my dad over to Village Oaks today. When we have brought up the "senior apartment" in conversation, his responses have varied but were mostly agreeable. This morning, his response was not agreeable. "I'm not going there. I'm staying here, or just send me home!" But he did get up when I awakened him, took a shower, and came for breakfast happy as a lark. It's a beautiful day! After he ate, he and I played some gin rummy, then about 100 games of tic tac toe on his dry erase board (how does he win so much????). I had enlisted my husband to come in and say it was time to go, and that triggered the explanation again. But he moved along with us to the car, and over to the center.

He went in happily, met some of the staff and was his usual cordial self shaking hands and cracking jokes. We walked around his area, found his room and went inside. So I'm going to be staying here? Yes, we'll come get you when we get back. Where are you going? And so we did that whole thing again. Well, this is quite a nice apartment!

We went down to the dining area, as we planned to come in time for lunch. Smart idea, huh? I saw a man sitting alone and asked if we could join him. I introduced myself and he said his name was Sam. A small quiet man...and in my head I'm wondering about his story, his family, his life. My dad and Sam shook hands, and I started some small talk about the food, the Diamondbacks (Sam said he only watched it if he bet on the game!). Lunch was served, and as the two men started eating their chicken, stuffing, rice, and corn, I gave my dad a hug and said I'd see him when we got back. OK, sweetie, see you then.

And that was that. Debbie, the nurse, gave me her card and said to call any time, every day if I wanted, to check on him. I'll do that. :) I'm hoping I won't do it everyday. It was kind of like dropping your child off at a new school. I was sad inside, but I know that he will be OK. I can't wait to hear if he participates in karaoke!

We will be leaving in the morning for FL. Now I can start thinking about packing for that trip. I couldn't even think about it before. Procrastination is my name. Hey, it works! :)

First time is the hardest!

Last night at dinner, we brought it up. We're going to be out of town (actually, we told my dad that we are going to help Tom's sister move) and while we are gone, we found a place for you to stay.

D - you don't have to do that. I'll be fine.
M - You'll have your own room, meals (probably better than my cooking), and we'll come get you when we get back.
D - I'll just go - - -( you can see his mind trying to find something) back where I stayed before.
M - ok, that'll be fine. We leave on Monday, and we'll take you over for lunch that day.
D - I'll go sometime during the week.
M - ok, that'll work.

How did we do? Tom actually started the conversation because all through the day when I thought of it, I started to tear up. After the start, I think it went well. To the naked eye, with what I wrote, it may not look like it. But the subject was brought up, the sky didn't fall down, and now we can bring it up again, hoping for the same type of response. yeah!!!

By the way, my dad knew me today. :)

first time ever...

I'm going to begin this with a big wow.
10 pm - just watched a show with my dad.

D - I'm going to bed. He gets up, picks up his shoes, and heads down the hall.
M- Night, dad.
D - come on.
M - I'll be going in a few minutes.

I hear him go use the bathroom, and then he walks back into the living room, turns and walks into the kitchen, through the family room, and back out to the living room.

M - Looking for something?
D - I'm trying to figure out where to go.
M - I'm sorry, I forgot to turn on your lamp in your room. So I walk down the hall in front of him, go into his room, and turn on the lamp. I turn around and see him standing there.
D - Not this room. I've been here before. Where's our room? This bed isn't big enough for us both.
M - I walk over and wrap my arms around him. Dad, it's Marcia, your daughter - This is your room. I sleep in the other room.
D - Fine, fine, fine. Turn off my light.

First time that has ever happened. I know he didn't know who I was, even when I told him. He seemed kind of embarrassed in a way and wanted me to go away.

He has had a different kind of a week. The caregiver was not here. He has spent most of the days with my husband, who did a great job caring for him. But that was a big change for him, and perhaps, somehow, led to tonight. Changes can bring about confusion. Here's hoping that tomorrow morning will bring me back to him. :)

Man, I hate this disease.

Procrastination

5 days until my dad goes to the care center. No, we haven't told him yet. I've gotten a little bit ready for the transition, but there is a lot more to do, and probably even more that I haven't even thought about yet.
6 days until we leave for Florida to pack up his home and put it on the market. No, we're NOT going to tell him about that. I have not even started to get ready for the trip, except for labeling a folder "Florida" and putting some important papers in it that I need to take.

I wonder if I just don't prepare anymore if the time will go slower? Or maybe the whole ordeal will not even happen. Maybe I'll wake up from this journey.

Realistically, I know it is going to happen and I am looking forward to the respite. It's been almost 10 months now, and I know I need a vacation. This trip is a break, but it's really not a vacation. But getting away and not having to do the care giving will be wonderful. I'll be worried about him, and yes, I will call the center, but I will be okay. I'm hoping that we will work like maniacs for a few days, and then take a day and maybe go to the beach! yeah! I'm looking forward to seeing many of my mom's things, and delight in the fact that I will be able to bring them home with me. Those thoughts make me want to go pack, get ready, and go! Naaa...tomorrow's another day. And besides, I still have more than 5 days to get it all together! I always work best under a deadline anyway. :)

Fear and apathy

One of the things I first learned in my support group from our facilitator was that Alzheimer's patients operate out of fear. Their world doesn't seem the same to them. Things look, feel, and smell differently. At times, their world may not be ours, so confronting them about the differences can bring agitation, verbal aggression, not to mention confusion.

In my dad's case, I think these changes bring fear and apathy.
* I gave my dad a pedicure yesterday. He had his feet in my foot bath, and when I turned it on, you would have thought he got an electric shot, or worse yet, been shot! It scared the bejeebers out of him.
* M - "Dad, we're all going over to Dawn's. Here's your water."
D - "Why do I want to go over there?"
M - "We're going to see her new wood floors and her new big screen TV."
D - "Nah, I'll stay here. I've seen wood floors before and I'll watch this TV."
* Hey, dad - come on in the pool with me!
D - "Nah, I'll stay inside."

I can usually come up with a zillion of these things, but right now, that's all I can think of to type. I guess I just wanted to say that my dad doesn't want to go anywhere, and is frightened by things that typically would never have frightened him. (You should see him jump if I have to wake him up!)

Wii

My son got a Wii game and we tried it out on the big tv this evening. My dad watched us bowl, and then we made a player with his face (so funny), and he played a game of tennis. I was quite impressed that he tried it. I know that I had a hard time with the controls with bowling and with tennis. I really didn't expect anything better from him. But he did try it. For him, a used to be very good tennis player, losing was not an option. "I quit."

He's all signed up at the center. He'll be going on the 30th of June for 30 days. And no, I haven't told him yet. That will come later...

Re-energized!

I went to my support group last night. It was just about the best meeting ever. Topics that were discussed appeared to be just for me. Nice to know that others are struggling with the finance end of this journey. Not that I want them to struggle, but knowing that I am not alone is nice. Seems that there is conflicting information out there and I am not the only one coming across it.

It was nice to hear stories that were touching and humorous. I really try to focus on these in my life and on my blog because they bring smiles and laughter, which is a relief. This disease really stinks, and I could become focused on the time that is needed for care, the financial and insurance whoas, the messes, and the loss - but I consciously try not to do that. It's all about acceptance for me. Accepting that Alzheimer's entails time, money, insurance, messes, loss and much more - it's just the way it is. For the most part, most of the time, I do accept it. Figuring out ways to handle it is the challenge. I feel that I have done a pretty good job of that. Of course, new stuff comes along and with that comes the emotional part of it all. Anyway, it was a good meeting and helped me to, once again, know that I am not alone.

One more thing - the group facilitator is great. She shares her journey of care giving for loved ones with us. She has written a book about it, and is in the process of writing another. I have read her first book, and truly enjoyed it and learned from it. For some reason, the powers that be, have let her know that this support group is not the place to be talking about her book. I never felt pressured to buy her book, and I know for a fact that she wasn't using this forum to sell her book. She is truly a compassionate woman who wants to share her story, and help others by giving information, insight, and support. So when I get her book back from my daughter, I will put all the information about her book on my blog. It is a book that really helped me and I think it will help others who share my journey.

This is worth repeating

Prayer for those Living with Alzheimer's

O God of love, hear our prayer
for all who suffer from Alzheimer's.
In the days of changing memory,
be with them in their fears.
In the days when memory has gone,
bless their families who suffer.
Surround them with tender love
from family, friend, and stranger.
Grant them peace in their hearts,
a secure home environment, and dignity in their lives.
May each day bring a blessing,
hope and greater love. Amen.

- Vienna Cobb Anderson

A Reminder

No matter what anyone thinks, this care giving does not come automatically for me. I admit that I do have patience, and that I can typically get my dad to do anything I want him to do. I keep up on the appointments, hygiene, medications, etc. But there are times I want to slap myself up side the head and say, "haven't you learned that by now?"

A few weeks ago, one of my dad's friends from Michigan died. I told him, and he had a genuine reaction of sadness, and we spoke of what a lovely woman she was. Well, yesterday, I found her obituary online, and I showed my dad, I guess because it had such a nice picture of her. It was like I just told him about her death for the first time. His hands to his chest, mouth wide open, "oh no! I can't believe it" just as he did when I told him a few weeks ago. Again, a genuine reaction of sadness. I felt terrible about making him relive that moment again.

It was a good reminder to me that he doesn't remember things. Not that I need a reminder...but maybe I do once in a while. He doesn't remember my mother being sick (5 year illness). Can't remember a lot of things. But a good thing today and yesterday...we did a crossword puzzle together. He has done them for years, and has always been good at them. He comes up with answers that I would NEVER come up with. I'm one that always goes to the back of the book to cheat. Not him. He doesn't do them the way he used to do them, but together, we completed two this weekend. A good thing. :)

A good day

When I left for work this morning, my dad was still sleeping. When I got home this afternoon, he was napping. He got up a little after 5, about a half hour before dinner. He looked like he was sleep walking when he came out into the kitchen. His eyes were slits, and those lovely bags we all get under our eyes, were very prominent. His one eye was tearing (I've seen this before). I handed him a tissue and asked if he was crying because he missed me so much today. His reply, "oh, were you gone?" Funny, Dad. I asked him if he wanted some coffee, and he told me that he would just eat breakfast. I told him it was nearing 5:30 and we'd be having dinner. He had this look on his face like, what?????? dinner???????? "what the hell time is it?" "Almost dinner time, I said". "OK, let me know when it is ready."

After dinner, we did a manicure (he was digging in my garden again). Then we played gin rummy, and he did a great job shuffling, dealing, and playing! Yeah! Even beat me 109 to zero one game. I got out the Trouble game and we played that twice. He beat me both times. :) A little help had to be given for rules throughout the game, but a lot less help had to be given when he counted his moves out than the last time we played. I have to get that game out more often. It brings out my competitive dad.

Last, but not least, I made an appointment with an elder care attorney. The app't isn't until the middle of July, plenty of time to fill out the TWENTY PAGE questionnaire and gather all the documents that need to be taken. I'll have to do a lot of searching and reading to fill it all out, but I'll give it my best shot.

I never know how a day/night will be. Today.... a good day. :)

I'm confused, but not trying to figure it out!

I'm telling you, all you have to do is imagine the worst case scenario for a situation. Just imagine all that can go wrong. Think of all the problems you will encounter. Anticipate the worst. Roll play in your head. Talk to a dear friend for support and strength. And then what happens? Nothing. The doctor just signs the papers. No problems. He doesn't act like it is any big deal at all. In and out of there...lickity split. I met Dr. G's twin today. I liked him. :)

Tummy problem

When I took my dad to the doctor a week ago Friday, I had anticipated getting all the paperwork filled out for his July stay at a center. I know I mentioned in an earlier posting that the appointment didn't go as I had planned and I encountered "bumps in the road", as I so cleverly put it. Last week, I took my dad to have a TB test on Tuesday, then back to the office on Thursday to have it checked. (It's OK) Tomorrow, I have an appointment scheduled for him for a physical, and hopefully the time (if his highness, Dr. G allows it) to fill out the paperwork.

I am sitting at my desk looking over the papers. I have a knot in my stomach. I feel like I am going to the Principal's office - like I did something wrong. In my head, I am hearing Dr. G's comments, questions, etc. and trying to find some good answers and comebacks for him. There is a form called "Physician's Authorization for Non-licensed Caregivers to Administer Medications and Provide Treatment". It has listed that this non licensed caregiver has to have:
1. completed the state of AZ approved training, or
2. met the expectations of the rules as outlined in State Regulation R-9-10-722, and
3. have skills verified by a licensed nurse.

OK, that says that someone is going to give him his pills. They have some kind of training, or at least a procedure for administering the right drug to the right patient. They put the pills in a cup, carry them to my dad, give them to him with a glass of water. Wait...make sure he takes them. duh. The drugs are listed on another page with the name, dosage, when it should be given, and diagnosis identified (for drug use). Simple? Nope. Dr. G says he won't sign it. He doesn't know these people or this place, and won't be responsible for it. huh? Something to do with liability? Does he only approve of certain care centers? I can't believe he doesn't have any patients in a center, and I don't believe that this particular place is the only one that requires that paper. Heck, I'll sign it. I am my dad's power of attorney for health care. Why does the doctor have to sign it anyway? He's gonna give me heck about it, I know. Center "must have the permission of each resident's Primary Care Provider for non-licensed Caregivers to administer medications". I called the center and told them about my last encounter. They were really nice about it, and someone went over to his office to talk with him. But they didn't have an appointment, so he wouldn't/couldn't talk with them. They did leave some information about their center at the desk. Did he read it? I wonder. They told me that they would go back (with an appointment next time) and speak with him directly if I have a problem with the paper work. I am not looking forward to seeing him again. I cried like a baby last time. I guess I have to start my mantra...I am strong! I am a rock! I can do this! (I hope.)