What will be the new normal?

It's difficult to believe it was only two weeks ago today that Mom fell and broke her hip. So much has happened in that two weeks. It feels as though it's been a lifetime.

Life does not stop when bad things happen. You can't say, "Wait a minute. I want to crawl into a cocoon and wait for things to change." You can't demand everything be put on hold while you try to figure things out.  So you keep plugging along with life moving in a blur and yet every event remaining in sharp focus.

Although Mom is making some physical progress -- she walked 40 yards yesterday -- mentally she is as far gone as she ever was. I visited her yesterday after her walking excursion. She was pretty wiped out. I got a brief smile when she saw me, but there was no real spark of recognition. We wandered around the nursing home . . .  she sitting in her wheelchair staring at her feet, me pushing, keeping up a constant chatter I knew she could not hear. I stayed with her through lunch. And then it was time for me to go to work. Duty, love and responsibilities collide.

Mom is settling in to her new home. She is adjusting to her new normal. We miss the old place. But she needs rehab they can not offer. I suppose that means we all adjust.

While Mom may not be functioning at full capacity she still carries with her some of the class that apparently is an innate part of her character. Everyone on the staff of both facilities tell my sisters and I what a warm, pleasant woman she is. It is something that has not changed with Mom. Even in the pain of a broken hip, the humiliation of having to be assisted with even the most mundane of life's routines, or in the lost recesses of her mind, Mom still says "please" and "thank you." She still smiles.

We cleaned out her room at the assisted living facility over the weekend.The staff there has already been to visit her in the new place. I guess that says something about our Mother and the kind of classy woman she is . . . even in her demented state. It also says a lot about the people who cared for her there.

We all miss her.

Moving Day

The past two days have been a lesson in politics, finance, health care and aging. It has not been pretty. It has not been fun.

But today is moving day for Mom.

Yesterday, after spending two days sleeping, Mom finally woke up. That's not to say she knew who we were or where she was. But she was awake. The hospital staff was relieved and their concern turned to working on getting her back to the same stage she was before her fall.

"We should begin to see a full recovery to her pre-accident state -- cognitively," one doctor told my sister and I. He started telling us there were drugs that could be used to help bring her back to her normal state before the accident.

I finally cut him off. "This is her normal state. It's as good as she gets," I said. Perhaps it was rude. But the thought of playing around with drugs trying to "bring Mom back," is rather absurd.

And don't get me wrong. There is no way to expect the staff to know what Mom was like before her fall. 

But it's true. Mom is pretty much back to the same mental state she was in before her fall. The only difference being she can't walk and she doesn't know she can't walk. She is hell-bent to get out of bed herself and use the facilities. I suppose that is one change from before as she hasn't asked to use the toilet in quite some time.

I spent a heart-breaking hour and a half with her yesterday afternoon as she begged  to be allowed to get out of bed. The staff did help her out. It was a three-person effort and not what Mom wanted. I'm sure she wanted privacy, but that was out of the question and she didn't understand.

After Mom was put back in bed she cried. I held her hand, laid my head on the edge of her bed and cried along with her.

She would ask, "Please, just help me. Just put my feet on the floor. Please." Over and over again I would put my mouth next to her "good ear" and tell her, "I can't Mom. You broke your hip. You can't walk."

Nothing clicked.

I riled against God. Really? Mom did all you asked of her all her life and this is the way you treat her? What kind of cruel joke is this? I'm not Job. And if someone tells me "God will never test you beyond your ability," I will (I promise) punch you in the face. Of course we will endure. What choice do we have?

Mom is going to be discharged today. Our first course of action was to get her into a rehab facility. And to be honest,  I hold little hope that Mom will ever walk again. As a friend whose mother also suffered from dementia and who also fell and broke her hip told me: "We tried rehab but when they don't understand they don't get good results."

We will give it a try,  but it almost didn't happen. Finding a bed for Mom was a lesson in the reality of nursing home care..

The Managed Care coordinator from the hospital came in to Mom's room with some news: "We are having a difficult time finding a bed for your Mom. Your first choice of places has no beds available."

Adding to the problem was the need to find a facility that accepts Medicaid as once Mom's money runs out we need to find a way to pay the (at least) $7,000 a month a skilled nursing facility charges.

We were told homes were reluctant to take Medicaid patients as Medicaid does not pay as much as private insurance or Medicare pays. When I explained Mom had both Medicare and private insurance  we were told that bit of information might help. When I explained we had money to pay for nursing care (for a while at least) once Mom was out of rehab, we were told that helped even more. When I explained we had been on the waiting list for our preferred facility since 2013 that was the clincher. One phone call and 20 minutes later Mom had a bed in the dementia ward of a facility that also offered rehab services. Once Mom's money runs out (should she live that long) she will be covered.

So basically, what we learned is the politics of nursing homes is they will happily take all your money and then get by with what the government will pay, but they won't be happy about it.

Mom and Dad worked hard all their lives and this is what it has come down to. Dad was the spender. Not a big spender, but he liked to enjoy life. They lived a comfortable but frugal life. Mom pinched pennies and reined-in Dad when she could. She did all this so she could live out her life in a bed in a facility that really doesn't want her.

The beginning of the end

I'm sitting in a hospital room watching Mom sleep.

Mom fell and broke her hip. And we are learning all the ins and outs of what happens the elderly when they have a life-threatening fall.

It may sound dramatic, but at 92 when a bone is broken, the healing process is long and slow. When a hip is broken it is even longer and slower. And surgery is required to fix the break. Kind of a scary prospect for someone as old and demented as Mom, but doing nothing is even more scary. Doing nothing would mean bed rest for months while the bones (possibly) mend. It means bedsores, constant pain and pain medication, the possibility of pneumonia and certain death. Odds were in Mom's favor to have the surgery, so that was what we opted to do.

My sisters and I spent yesterday at the hospital with Mom. She slept most of the day and had her surgery in the afternoon. Today we are still waiting for her to wake up. They took her for a CT scan to make certain there was no brain injury in the fall. But Mom sleeps. She wakes occasionally but there is no spark of  recognition when she looks at us. To her we are more in a long line of people insisting she drink more water.

The possibility of Mom getting up and actually starting rehab gets smaller by the hour. And no matter how much we try, my sisters and I can't convey to the staff that Mom doesn't function much anyway. . . or that even with the hearing aids she doesn't hear a lot or that we aren't certain how much she understands when we talk to her. But I can emphasize with them. It's difficult to convey what Mom is like now. How does one explain Mom is here, but she isn't Mom?

This morning I finally told the doctor we knew at 92 Mom would probably not live another 10 years, or five years. I wanted to tell him we didn't expect her to live out this year but I could not bring myself to say it. Although we all know it to be a very strong possibility.

I think perhaps those were the words he was waiting to hear because he sat down and talked to me about palliative care. That is to say, how much we want done for Mom, what type of life Mom would have wanted to live and what type of measures Mom would have wanted taken to prolong her life. He then added, "Often families will tell me, 'I wish we would not have done so much for Dad. I wish we would have let him go peacefully.'"

There are no easy answers. Would Mom have wanted to live to be 92 had she know she was going to be laying in bed, hooked to IVs, sleeping with her mouth open, not able to converse with others? Would she have wanted to live not knowing who her own daughters are, or not being able to take herself to the bathroom? Absolutely not. And we all know this. Mom's biggest fear of old age was sitting in a wheelchair on the veranda of a nursing home somewhere wearing a pink mumu and no bra. 

Yesterday we were talking to the hospital staff about rehab facilities for Mom once she was discharged from the hospital. Today I don't know if she will be able to go to rehab and will be sent instead to a nursing home. She can't go back to where she was. They were an assisted living facility. She now needs full time skilled nursing care.

Mom wanted a death with dignity. Mom's mind is gone. Her body stays strong. And all we can do is sit and watch.

To joke or not to joke

There is a joke about people with Alzheimer's being able to hide their own Easter Eggs. I suppose it is cruel and tasteless, but truth be told it is fairly close to accurate. If Mom could understand the concept of hiding Easter Eggs she certainly could hide her own. Unfortunately trying to explain to her the how and why of hiding eggs would be an exercise in futility.

That's the problem with dementia/Alzheimer's. As the oxygen supply to the brain becomes less and less, short-term memory disappears. But I have to wonder if there are any memories or thoughts going on in Mom's head. At one point she knew she was "slipping;" but what does she think now? 

We were having our weekly coffee with Mom on Saturday. I brought muffins from her favorite bakery. Although she and Dad would take our children there regularly, she didn't recognize the bag. But she enjoyed half of the muffin. She put her half-eaten muffin back into the bag. My sister, granddaughter, Mom and I continued with our visit. Every few minutes Mom would open her bag, look inside and be confused as to why she had a half-eaten muffin in a bakery bag. She would open it, look at the muffin, be just a little angry and close the bag again. She carefully creased the fold and made it lay flat. I had to wonder what she was thinking. Was she remembering folding seams for sewing or remembering packing our lunches for school?

From first grade through fourth grade Mom packed our lunch every day. In fifth grade we were bussed to the high school (where they had an elementary wing) and we ate in the cafeteria. At the time my sister was a senior. I dreaded the days when my lunch overlapped with my hers. She would take great pleasure in
seeking me out and and cleaning my face with a napkin. Spitting in the napkin before washing my face was even better. Back then we were more adversaries than the friends we are today.

But I digress.

Although Saran Wrap was on the market, Mom continued to use wax paper when she packed our lunches. I'm sure the reason was because it was cheaper.  She was pretty good at using what she referred to as a "drug store fold," starting at the top and folding the wax paper over until she had a snug little package. Potato chips, brownies or cookies were all wrapped in wax paper. There was always some kind of fruit and occasionally a thermos of soup to go with our sandwiches. My younger sister loved peanut butter and jelly sandwiches. I preferred Velveeta or chipped beef (yeah, I know).  We could purchase milk at school for two or three cents a carton, but most of the time I brought milk from home in a thermos. I'm guessing in the long run the milk man's delivery to our home was cheaper than a carton from school.

Our granddaughter loves milk and we go through a gallon every two days. I have no idea how Mom could make two gallons last a week for the six of us. But I don't remember her going to the store for milk very often.

All this is lost on Mom now.

I look at her sitting in her chair, opening a bakery bag, getting really angry that someone ate half her muffin, folding the bag closed again only to open it again a few minutes later and get angry all over again. I wonder what happened to that lady who could make a gallon of milk stretch for a week. What happened to the woman who could make a drugstore fold and keep my school lunch fresh?

She's still there, but she's not.

We learn to cook

I learned to cook at the kitchen counter in our home in Hamilton. Mom would stand between my younger sister and I and show us how to sift flour, beat eggs, cream butter and whip cream.

From Mom I learned you beat eggs and butter together for longer than you feel is necessary to get soft, chewy cookies. Cake batter does not need to be mixed very long to get a light and airy cake. Mom also taught us to adjust seasonings in recipes to suit the family's (Dad's) taste.

Although Mom taught us the basics -- how to sift and measure flour, how to separate eggs, how to pack brown sugar or how to level off a tablespoon -- she seldom measured carefully herself. And we eventually we learned to cook using the "Star Spangled Banner Method." It meant you recited lines from the national anthem while adding ingredients to a recipe. Telling us to measure "By the dawn's early light," meant you recited, "Oh say can you see by the dawn's early light?" while pouring.We learned you kind of got a "feel" for how much of an ingredient needed and then adjusted by taste.

Her recipe for popcorn balls was: 1 cup sugar, 1 cup corn syrup, 1 box of your favorite flavored jello. Boil like crazy for one minute and pour over popcorn. People would ask, "How much popcorn Chris?" To which Mom would replay, "Oh about a dishpan full. More or less."

Our granddaughter can't wait to get her braces off to enjoy Great-Grandma's popcorn balls once more. I hope they are as good as she remembers.

Our own children were not so interested in learning to cook. Different generation I guess.

Our sons do some cooking. I believe our youngest son creates their Thanksgiving dinner every year. I'm also told he makes really good salsa. Our oldest son has lived on his own for a long, long time and has a repertoire of favorites. I recall the year our second oldest son was going to roast a turkey for a family Christmas dinner (our family and his in-laws). His wife and her family are vegetarians so many phone calls between the two of us resulted in a turkey that was actually pretty good. He did confess he would never try roasting a turkey again. 

Our daughter is another story. After leaving the Navy and getting married, she  is learning to cook by the self-taught method. She pours over cookbooks or looks at recipes online and follows the directions to the letter.

I spent several weeks with her toward the end of her pregnancy. Her husband was finishing some job training in another state and since she was having twins we decided it best she not stay alone in case they decided to make an early appearance.

She and her husband are interested in eating as healthy as possible and she shops at an expensive natural foods store in California. While I was there she would look for interesting recipes online and the two of us would go shopping for the ingredients. She was enormously pregnant and it was our one outing for the day. For a homebody like myself it was one of the most pleasant "vacations" I've been on in a long time.

Our daughter carefully measured, weighed, diced and shredded each ingredient. On days when I cooked and made her sit with her enormously swollen feet up she would say, "This is good, but it tastes different than it did last time."

"Oh," I would say, "that's because I substituted XXXX for XXXXX." Then I would explain to her cooking by the Grandma method:  Look at the ingredients, look at the instructions and wing it from there.

She would shake her head and tell me she didn't get it.

Her twins are 18 months old now. Impromptu trips to the grocery store are not so frequent and she is slowly learning to improvise.

She told me the other day, "I'm learning to look at a recipe now and figure out how to make something with what I've got at home."

If Mom were in a frame of mind where she could understand, she would be pleased.