Mother's Day

Its hard to celebrate her birthday, May3 and Mother's Day this weekend because there is little to feel grateful for sometimes. She is here, with us, its true. But, she is not with us, and wishes that she could, "go home", as she asks so often.
I am baking a lemon cake. She likes lemon. And there are yellow flowers at the kitchen table.
This weekend we have trimmed her finger nails and toe nails, put on a new spring top and fresh washed jeans. Her hair has grown long and is pulled back into a pony tail.
This morning, at breakfast, I asked her how many children she had. She said, "18".
And, partially she is right, as she babysat so many children throughout her life.
She was known as "Aunt Pat", and the kids, who are now grown adults, remember her fondly.
I told her the names of her five children. She smiles, and looks at me like I am funny. But, she does not know what I'm talking about. I asked her if she knew which one I was, she said, "foo foo". This is not unusual.
Dad said he thinks she is getting better. What he means is that her skin, feet and nails are looking good. We used to worry because they were blueish, and very hot, or puffy, or scaly.
He is commending us (he and I) for the job we are doing, and trying to say this is much better care than she would receive elsewhere. He's probably right. But he needs some respit.
She is eating a little and sleeping a lot.
But, we will celebrate Mother's Day, and have a piece of cake with her.
I'm am grateful she is here.

Fish out of water

I haven't done much surfing since my mom got sick.
Since 1997, I was surfing every weekend with my boyfriend, John.
We'd get off work on Friday and drive directly to the surf spot, where we would stay until late Sunday afternoon before heading back to town.
We spent the entire day near the water. When when we weren't riding waves, we were watching them; or talking with friends, napping in the Volkswagon vans, or making tea on the propane stove. But, when mom got sick, surfing began to close out. So did my relationship.
My parents were living at the beach when mom first started having difficulty.
So, as John and I raced to the beach each weekend to forget about work and responsibilities, I began to feel guilty for not being with my folks. I thought it hurt them to know I was somewhere at the beach, but not with them. After awhile, I couldn't justify my joy anymore. So, John went his way, and I went mine.

Now, I paint pictures of the ocean, and think a lot about surfing.
I don't know if I will get another chance to live that life again. But, I'm hoping I will.

Vows

After talking with my dad's sister tonight about why he doesn't want to move mom into a nursing home or foster home, she told me that he said, "till death do us part". So, I may have been wrong in my speculation about why Dad won't put mom in a care facility. At first, I thought it was the shock of the expense, and the "spend down" in order to qualify for Medicaid, and his belief that she will be neglected in one of "those places". Then, I thought he was afraid of feeling some kind of guilt if he moved her into a facility. Then, I thought perhaps he made some kind of promise to her in the last few years. But, my aunt said that he feels he needs to take care of mom because of the vows they made when they got married. What can you say to that.

While my mom suffers with the disease, my dad suffers too. He isn't free to live his life as fully as he could. He still sleeps in the same bed with her, partly because its natural and partly because she is looking for him. She insists upon holding his hand while she sleeps. Her nightmares cause her to call out in the dark, which makes it hard to rest beside her. Sometimes she tries to get out of bed, and falls to the floor. I hear the "thump"and run across the hall to see dad picking her up and and taking her the bathroom. It makes for a rough night.

Dad doesn't have many social outlets and he doesn't go to mass anymore. That's because there is no one to watch over mom while I'm away. He could go to mass, and do other things on the weekend, if he would allow someone other than me to be a part of the care giving team. But, he's not ready for whatever reason. So, he doesn't see his friends and doesn't go to church.
I think he is losing some of his faith. I've been hinting to my sister and brother that someone invite Dad to Christmas mass so that he won't be alone on such a special day. We'll see what happens. I'll be here to look after mom, so for sure he can go to mass. I just don't want him to go alone.

He wants to take a welding class, which I think it great. The class is for 11 weeks, half days on Saturdays. I guess I could change my schedule and go to the beach two other days during the week, so that he could take this class and go to mass on Sunday. It didn't dawn on me till just now. The one problem is, that if I find a job in the next 3 months who'll take over my post?
Again, the issue of not having another trained helper comes up. I wish he could see how important this is. But, he doesn't want to have a stranger in the house and he doesn't want to pay the hourly fee. So, I don't know how we are to make plans and proceed.

December Chills

It's December 15th and Christmas is almost here. We had a bad winter storm come over Portland and the north coast this week, so I didn't drive to the beach for the usual weekend break. Instead, I stayed home with mom and dad and made holiday cards in between the usual caregiving duties.
It's good that my dad and I are a team because caring for someone with advance Alzheimer's is way too much work and intensity for one person. As a team, we tag off when the other runs out of patience.
Sometimes though, you just run out of juice. Even though you love the person, something inside you gets so tapped out, I don't know how to describe it.
Me, I get anxious when I don't get a break after so many days. That's why the drive to the beach is so important. I get to exercise, meditate, look at the waves, watch the surfers and get lost in deep sleep. Even talking to the neighbors, or sweeping pine needles off the driveway is a golden reprieve.
My Mom is restless. She wants to get out of bed and into the wheelchair and be taken to the kitchen table. We offer her liquids, healthy snacks, and try to keep her with us awhile, but soon as she gets to the table she wants to go back to her bed. And so it goes. This is where we start to wear thin on patience, because we can't seem to make her comfortable in either location. So we dance. Back and forth all day from bedroom to kitchen. We've worn a path in the carpet and nicked the doorways so badly with the wheelchair that the wood trim will one day need to be replaced. It's not important, just a side effect of having an old wheelchair in a house not designed for one.
My dad is suffering with depression. He thinks this is now his lot in life, and that putting my mom in a home would be "acting like a cold fish". He thinks God has forgotten him. He doesn't see the joys of the day. He can't recognize a nice hot meal, a flower, a day when mom is smiling as a simple joy. He is quite miserable. I've tried talking to him about getting away, seeing someone, walking, socializing, etc. But, he's angry and stuck in his darkness. So my suggestions are irritating and Pollyanna-ish.
Dad won't let us ask for outside help even though we've qualified for Hospice.
Its very frustrating, because I have no control about the decision he makes for her care, even though I try to help him figure it out. Maybe its his Catholic upbringing that imprisons him. Or, he's just too depressed to see his choices rationally. I don't know. So I hold my tongue.

Rains are here

Its November and Thanksgiving is almost here.
I wonder if this will be the last one we will share with my mom.
It would be cruel if she were to continue this way into 2009.
I walk by her bedroom to see if her eyes are open or closed.
If she's awake, I crawl up on the bed and lay beside her.
We hold hands and she sometimes smiles. She has a white teddy bear in her arms which she indicates is her friend. She says a little sentence and we pretend we are having a conversation.


I've been interviewing for jobs again, and soon I will be back in the working world, doing something that doesn't really matter. I'd like to stay with her, but I have to pay the bills and the mortgage, so I'm trying to make the most out of being here with her now.

This December 27th will be my parents 50th wedding anniversary.
I hope she's with us until then. I wonder if this is something my dad thinks about.
They always made a big deal of the number of years they were married.
Maybe I should go out and buy them a traditional "50 Years" platter to mark the day.

Its hard to care about anything these days. My dad and I don't enjoy our food anymore. I make great soup or even a chocolate cake - but they seem void of flavor.
I can't sleep much, so I get up early and try to write. My dad tinkers on things in the garage.

I think its so apprapo that winter is coming. The leaves are almost gone and the wind and rains are here. It seems like nature is mimicking what's happening with my mom. Surprisingly, the last of the roses are on our table. My dad rescued 4 yellow rose buds and put them in a vase on the kitchen table. Now they are in bloom.
Yellow is my mom's best color, go figure.

Leaves are Falling

My mom doesn't know who I am any longer.
But sometimes she thinks I'm funny and tells me so.
Most of the time her words are jibberish, and I pretend I understand.
But on occassion, she is clear.
Yesterday she said, "You're the strong one". That was a surprise.
Was it what she intended to say, or just an accident?
In the past she has said things like, "You're a nice lady", or "You're pretty".
But, her last comment seemed so insightful.
I wish I knew what was going on inside her head.
I think I could do a better job of making her comfortable.

We saw the doctors this week. Their reports weren't good.
"Keep her comfortable", was the jist of it.
They did some testing and found she has no circulation below her knees due to atherosclerosis (as if Alzheimer's wasn't enough).
So that's why she's not walking much. The blood vessels and arteries are almost completely closed. "Hospice isn't far away", they told us.

Autumn brings change

She can no longer walk. As of last Friday, actually, she couldn't stand or put pressure on her feet. Its wierd. One day she's shuffling from the bedroom to the kitchen almost every 15 minutes. The next day, she can't hold herself up.
We tried using a walker that we had here at the house, but she could not hold herself up. So, my dad went and got a wheelchair.
It helped a little, but neither of us has much experience with transfering. I think I hurt my back trying to pick her up yesturday. She's like a bag of sand. Heavy, weighty. Now, Dad is touring care facilities. Looking for something suitable and affordable. He tells me the starting price is $4100/month and the prices goes up from there. The selling points they lace in their pitch such as: daily activities, brightly colored rooms, flat screen tvs, etc. really don't have much revelence in our case because she sleeps most of the time. We wake her to offer her water and food or to check on her bathroom needs. That's it. She has little interest in food, people or her surroundings. It's amazing how things have changed from a week ago. Shocking actually. And I'd really like to leave. Run away. Go surfing. Put my head in the frigid water and shock my ears with the sound of crashing waves. Yesterday, I actually visualized packing my van and driving away. I was going to tell my dad that I reached my threshold and can no longer deal. I was planning to drive to the beach house where I would be safely away from the pain of watching them both suffer. But, I'm still here. Trapped in a way. Because, how can I leave. She's my mom.