Saturday, August 17, 2013

Heartbreak and healing

Mom is leaving our home on Monday. The deed is done, the deposit made, the evaluation complete. Now the time for self-doubt has really kicked into full gear.

And the calls are coming.

Have you thought about respite care? Have you thought about daycare? Have you thought about bringing someone into the house?

Yes. Yes. And yes.

Then there are those well-meaning people who take great pleasure in telling you what horrible places nursing homes are, how the staff mistreat and abuse residents and how they had a relative that went into the nursing home and was dead the next day.

Am I abnormal for wanting to stick their faces into a waffle iron?

The killer was a Facebook comment (and I'm paraphrasing) . . . I took care of (so and so) for as long as I could and then I needed to have some income coming in and a steady job. Fortunately I had relatives in Michigan who could care for (so and so), so she didn't have to go into a nursing home. I think that should be avoided at all costs.

Really? You don't see the irony here? You could no longer do it, so you pawned the person off on more relatives. Well, guess what? We've run through the relatives. And people are not exactly lined up to give me respite care. They all have lives of their own and rightfully so.

But to my children, I will say this . . . If the time comes that I can no longer care for myself. If the time comes when I panic whenever you step outside to check to see if you left your cell phone in the car. If the time comes when I don't know how to make toast, wash my hair, take a bath or order from a menu, put me in a home. No guilt, no self-doubt, no broken heart. I never, ever want to be that kind of burden on you. I never want to put you through this.

This is hard. This is not fun. This is heartbreaking. Most of the time Mom doesn't know who I am and I know I am simply a port in a storm for her. The person who stays with her during the day. The person who helps her get ready for bed at night. And then for one brief moment she will have an epiphany, the light will shine through and there will be recognition in her eyes.

It happened the other night. I was helping her into bed. "I love you. I loved you when you were little too." And in the morning she was gone again. But for that brief moment, those few moments between wake-fullness and the dreamworld, she was there. My Mom was there. Those moments make our decision all the more difficult.

PS  The day after we take Mom to her new home I am leaving to help my daughter in California as she nears the end of her very long pregnancy. It is suggested we stay away from the care facility for two weeks while Mom makes the adjustment. When I come back it will be time to visit Mom again. I want to start remembering the good times. Right now the hard times are overshadowing the fond memories. That has to end and it will.

Monday, August 12, 2013

Changes, they are a' comin

The winds of change have blown through our lives. Once again.

My sister found a care facility that will take Mom. We had initially not considered this nursing home because of cost, but after being turned down by a home last week, I think we were more willing to consider other options. Our concern has always been Mom would outlive her money and this facility does not take Medicaid. It's a harsh reality people don't consider until faced with it: Care facilities are expensive and when the money is gone, there has to be a way to continue to pay.

Enter the U.S. government or wealthy relatives. None of us are wealthy.

I have no doubt if Mom were in her right mind and if Dad were still alive this would absolutely devastate both of them. It was very important to them they have money to live comfortably and have something left over for us when they were gone. The reality is, none of my sisters and I expected or anticipated money being left to us. It's not being noble. It's not being unselfish. It's just a reality we've joked about since we've all reached adulthood.

So tomorrow Mom will have to endure another mental evaluation. This evaluation will be used to determine how much care she needs rather than being used as a tool for admittance.

Once again I'm dealing with self-doubt. This time I am being more realistic. I can't do this much longer. I can't divide my time between the growing need for constant care for Mom, my need for an occasional escape and trying to be a mother to our granddaughter. I may not be fully aware of what lies ahead were I to continue to care for Mom. I do know what lies ahead in parenting a teen. I am as prepared as any second-time-around parent can be.

And Mom is becoming more difficult. This afternoon she wanted to go for a ride. I was reading a magazine and our granddaughter was watching television. Mom can't really read any longer and she found the blue people on the screen (Avatar was on) simply too confusing. So she kept asking "When can we do something different?" I finally stopped ignoring her and said, "Let's go for a ride."

Mom came over and gave me a big hug and told me she loved me. Even in her demented state she can pour on the guilt. We got in the car and headed north toward Saugatuck, taking the back road along the lake. It's difficult to tell what sets off her but once she gets agitated there is no calming her down. She suddenly wanted to know where we were going; how long we would be gone; were her clothes still at home; would we go home to make sure her clothes were still there; and did she have a jacket when she got into the car?

At some point I realized she didn't recognize where she was and was panicked. Despite the fact this was a road we travel many, many times she didn't recognize any of the landmarks. This is happening with more and more frequency. It's time. It's only going to get worse.

I will go into this evaluation with an open mind. I can't be all things to all people. We all simply do the best we can with the hand we've been dealt and carry on from there.

Friday, August 9, 2013

Mom was always the hostess with the most-ess

It was Mom who taught me the basics of cooking. She taught my friends the basics of cooking as well. Mom was one of several community members who taught cooking through the local 4-H club.

Classes were held after school in our home and generally started sometime in the fall and ended sometime in the spring. At least that's the way I remember it. 

Each 4-H member in the class would take a turn demonstrating the preparation of a dish, cake, pie, cookie . . . whatever. Mom would fill in with ideas and demonstrations of her own. We learned how to stretch budgets, make desserts, serve tea and host a party.

In the spring of each year we would host a Mother's Tea for our mothers and Mom taught us to make finger sandwiches, tea cookies, punch and tea. We were taught how to set a table and serve correctly, how to present food and how to be genuine hostesses. Times have changed, but good manners are still good manners. 

Mom made it her mission in life to expand her horizons and look beyond the normal and mundane.

When my sister's high school German Club hosted a progressive dinner, Mom volunteered to provide the Hors d'oeuvres. I am eight years younger than my sister, so I don't remember the work involved, but I do remember the smoked oysters, the cheese platters, the fruit, fondue and punch. 

The dinning room table was stretched to the max and all different kinds of food covered its length. It was artfully displayed and I'm certain it was different fare than most expected. 

Mom also hosted Women's Teas for that conservative political party she campaigned for during election years. State representatives and senators would make campaign stops in Hamilton and Mom would open our home for them and serve the usual tea fare. It was all very formal and proper.

I was a small child the year we built our swimming pool. That summer Mom was preparing to host a tea for a state representative. Since the pool was in, Mom and Dad thought it would be a good idea to pour the cement for a patio area adjacent to the pool. If they planned correctly, the cement would dry and cure and the patio would be ready in time for the tea. Ahhh, the best laid plans . . .

The cement truck arrived on the designated day and backed in to the space where the cement was to be poured. Unfortunately it backed over the area where the drywell for the kitchen sink was located. (The greywater from the kitchen sink drained into this rather than into the regular septic tank). There was a loud groaning sound and the truck sank about six feet into the yard.

There was no way it could be fixed before the impending conservative political party tea. So Mom, ever the resourceful one, had Dad line the gaping hole with saw horses and hung potted geraniums from them. I think they may have covered the pit with large tarps.  

When Mom and Dad retired and moved to Glenn, Mom continued to host afternoon teas/coffee. The women of the community looked forward to the events. Mom would pull out all the stops and bring out her good china and her Fostoria and serve cakes and cookies. 

Playing hostess was something Mom truly enjoyed. She was good at it and taught her daughters to do the same. We may not have followed in her footsteps and played hostess the way she did, but we did learn the proper way to do things. Whether or not we decided to follow in her footsteps was our decision.

When company comes to my house we order pizza, serve it from the box and set out two-liters of pop for everyone to help themselves.  I definitely am not the hostess with the most-ess.


Wednesday, August 7, 2013

Disappointment

Yesterday was the day for Mom's evaluation -- a step toward moving her into an assisted living home. She didn't make the cut.

We were trying to get her into an assisted living memory unit (or something like that, I'm learning the correct terms for this new chapter in our lives, but apparently I'm a slow learner). We had hoped we had found a solution. She would have her own room with a small bath attached. Meals would be served in a communal dining room. There was also a communal living room and small kitchenette. Unfortunately Mom isn't cognoscente enough to handle the situation. She can dress herself, she can bathe herself, she can feed herself. She can't follow directions. You can't ask her to go into the living room and sit down without taking her by the hand, leading her to a chair and showing her where to sit.

In the back of my mind I had always wondered if perhaps my sisters and I were over-stating the problems we were having with Mom. Perhaps the problems we were having were the result of our own inability to handle Mom's diminished mental capacity. I mean after all, she still can do a lot for herself. Apparently I was mistaken and Mom truly is further gone than I was willing to admit, or was unable to realize.

A medical social worker came to the house to do the evaluation. Mom sat through the medical review . . . what meds she is on, does she have allergies, what surgeries has she had, etc. etc. etc. Then came what was called a Mini-Mental evaluation. Mom could not make it past the first question, "What season is this?" You could see she was shutting down. It's the blank stare and then the questioning look directed to me to help her out.

I took a breath and looked at Mom, "She wants to know what season it is. Is it summertime or wintertime?"

Mom got that what kind of idiot do you think I am look on her face and snapped back, "Well it's not wintertime."

That ended the evaluation.

"She isn't going to be able to finish this," the social worker said. Then she dropped the bomb. Mom won't be able to function in an assisted living center -- even if she does't have to cook. She needs more individual attention than the staff would be able to provide. So we are back on the waiting list.

I thought I wasn't ready for  Mom to go to a nursing home, but I have to confess, I am disappointed. I want my life back. I know to many that may sound harsh, but for the past year I have not been able to step outside without telling Mom where I am going and then waiting for her to go to the bathroom, put on her shoes, find a jacket and come with me. It's a procedure we follow to simply take a bag of garbage to the dumpster or to pull a few onions from the garden for dinner. It may not sound like much but after a while it is. I selfishly want to be able to simply jump in the car and drive to the neighborhood party store to buy a loaf of bread and a gallon of milk without making a major trip of it.

I love my mother. But I am close to my limit. She is joined to me at he hip. I can't walk into the kitchen without her following me. If I go to the bathroom without telling her she will panic and run through the house looking for me. She doesn't know my name. She doesn't know I am her daughter. I'm just the familiar face that takes care of her during the day.

But life has a way of going on, so this morning we started our usual routine . . . a drive to the store for milk, a drive past the lighthouse, a stop at the greenhouse to give King is morning caffeine fix and then home for coffee and blueberry muffins. Because she was up so early the post office wasn't open. We will make the trip in a few minutes. I am trying not to go out for coffee, I don't need the calories or to spend the money -- be it her's or mine.

I know something is bothering her because she is reading her "trouble" Psalm. "Wait I say on the Lord and be of good courage. . . " I don't think she realizes she is reading out loud. But she only reads this verse when she is bothered by something. After Monday's trip to the doctor and yesterday's visit from the social worker, I am guessing she knows something is amiss. It will take a few days, but we will eventually get back to our normal chaos.

Life has a way of doing that.

Sunday, August 4, 2013

Patience is not my middle name

Mom loves road trips. Put her in a car and we can drive aimlessly for hours and she is happy as a clam. Of course there is no explaining to her our trips are running me about $60 a week. Her pat answer for anything she doesn't understand is, "Oh really?"

Today we didn't have an itinerary other than our usual trip to the coffee shop and post office.

Our son showed up at our house this morning to play golf and Mom was ready to go as soon as they left. It was 8 a.m. and she had already been up at least two hours. I had things I needed to get done, bills to pay online and a few other computer related tasks. She views computer time as game time. For the most part she sat quietly, hearing aids whistling a nameless tune. I think she only asked five or six times if we were going to go anywhere today.

I finally announced it was time to go. She didn't understand. "What do you want me to do?" I suggested she visit the bathroom before we left. She didn't understand that either. She went into the bathroom and started cleaning the toilet. Part of me wants to laugh, part of me wants to cry.

I count to 10, then 20 and sometimes 50. I don't want to be impatient with her. I want her last few years of life to be happy ones. They aren't. I know that. She misses Dad. She doesn't understand what is going on. She doesn't know who I am. She refers to me as the "Driver Lady." (At least I think she does. Maybe she's calling me the Dragon Lady). She is lost and confused. She clings to me like a toddler in a room full of strangers.

It must be so horrible to be stuck inside her head. There were days when she would struggle for the words she wanted and eventually give up. Now I don't know if she has given up before she starts or if her mind is so gone she simply doesn't know any longer. Her behavior suggests she no longer knows.

At meals if there is food on her plate she can't finish, rather than set it aside, she will try to pawn it off on someone else. No matter how many times I tell her, "No mother, I don't want your chicken. King doesn't want it either," she will keep asking. When no one will take it she will either put it back on the serving plate or try to give it to the dog.

It really makes her angry when the St. Bernard sits next to her with her head on the table.I keep telling Mom if she doesn't want the dog to beg she needs to stop feeding her table scraps. It's rather difficult to discipline a dog who keeps getting rewarded with food. Sophie (the dog) will rest her head on the table and raise an eyebrow at me. It's as if she's telling me, "Yell all you want. I am going to get some people food here in a minute."

It was Mom who taught us not to feed the dog at the table. It was Mom who taught us our table manners. It's difficult to grasp the concept that woman is no longer with us. I keep asking myself, "Who is this woman in the chair? And where is my Mother?"

Mom was the classy woman who traveled around the state giving book reviews to Ladies Church Guilds. Mom was the woman who served on the board of directors for Social Services. Mom was the one who campaigned for the only president who resigned from office. Mom was an alternate delegate for that conservative political party's state convention.

Who would have thought she would become the woman she is today?

Friday, August 2, 2013

It's just a little stressful

Word has come down there is a room available for mother at an assisted living center. The angst has begun again. Is this the right time? Can I actually do this? How hard will this be on Mom? What if it's the wrong decision?

My sisters all feel it is time. In my heart I know . . . no, I do not know. I am filled with doubt.

King, who can (and regularly does) escape to the farm during the day, thinks we can continue to care for Mom indefinitely. Our daughter and I think his feelings may be some residual guilt over the home his mother lived in the last few years of her life. It was, by all standards, fairly dismal.

For whatever the reason, King has his doubts. When we found out a space was available, King and I fought about it all day. Granted, he said it was not his decision and what we did was ultimately up to my sisters and I, but given all the self-doubt and angst I  was feeling, I thought he could have been a little more supportive. And told him so. Over and over and over again.

On the off chance Mom could understand what we were arguing about, we resorted to texting. Just because we've been married for more than 35 years does not mean our maturity level has progressed and we fought like teens.

In the end King ended up apologizing to me -- via text, and I, being the mature, responsible adult I am, texted back: It's too late. I have a horrendous headache and am having chest pains.

It could have been indigestion. It could have been anxiety. It could have been an over-active imagination. It could have been misguided hope. But I pulled the "I think I am dying and it's your fault," trump card.  I know, I know. A really stupid, self-indulgent, immature move on my part. Since I'm not generally given to dramatics, I can't say I've ever used it before, but I was tired of it all and wanted everything to just go away. Besides maturity had fallen by the wayside long before this.

I was laying on our bed, pretending to be asleep. I may have even dozed off for a moment. I opened my eyes and King's face was a couple of inches from mine.

"Yes. I'm still breathing."

"Okay, good. What's for dinner?"

And so life goes on.