Thanksgiving--Then and Now

When the Pilgrims celebrated their first Thanksgiving in the new land they were probably grateful for surviving their first year and for the bounty on their table but also were mindful of the way things were before they had to make so many adjustments in their lives. Surely they were saddened by those they left behind and for the irrevocable changes that occurred during the last year.

So, I can relate to those emotions as we approach this holiday of Thanksgiving. I am grateful for the bounty that awaits me--the joys of sharing a holiday in the home of our engaged son and future daughter-in-law and deliciously prepared food and good times to be shared with those we love. But I am also mindful of the way we used to celebrate the holiday. Long ago we sat at my mother's table as she proudly produced a perfectly prepared turkey and all the trimmings. My father would carve the turkey and inevitably spill the wine. We propped little ones on phone books and talked about the plans we had for the year to come. More recently, it was I who was the hostess serving our own children (at varying stages of their lives, and often on brief vacation from being away at school) and our aging relatives spent a few days catching up with the family. I reveled in having everyone together for just one long weekend.

Now, I need to adjust to the new order. Mom and uncle can no longer make the trip to celebrate the holiday, one child and his family, as well as our youngest, the PhD candidate, are over 500 miles away and the family cannot spend the holiday as one this year. It is sad, but true-- nothing stays the same. There is guilt about enjoying a holiday while mom and uncle need to stay at the nursing home far from family on Thanksgiving Day. The simple things we take for granted one year no longer apply the next. My Thanksgiving is blessed by still having my mom and I am grateful for my loving family and good times yet to come. But, just as the Pilgrims did so long ago I must take stock of all that is good in my life while I also mourn the loss of the way things used to be.

The Restless Relatives

I just came home from visiting my mom and uncle--whew!! they were restless and ornery today.

My uncle couldn't stop itching (his usual wintertime dry skin problem that seems to defy medical marvels); his foot kept slipping off the foot piece of his wheelchair; and his food wasn't cut up fast enough my me!! My mother had a whole other list of problems-- she couldn't locate her socks that were buried in the drawer; the window in her room was letting in too much cold air ( it felt wonderful!, but that's just me); she was upset because I threw away too much of the food that was rotting in the bag she carries on her walker; and she was wearing a short sleeve shirt, complaining about the cold, but refused to hear the suggestion of changing to long sleeves.

Wow! I had so much fun that I need to probably drink a gallon of some alcoholic liquid or numb my jangled nerves by vegging in front of the TV for several hours. I really do feel the need to see them, and usually enjoy the connection that I get from those visits, HOWEVER, today was very different-- I was thrilled that one of their friends from the senior center came to visit so I could make a faster than usual exit. For once, I was also happy to have the long ride home so I could calm myself and decompress from the visit with the curmudgeons.

The Joy of an Upcoming Wedding

Our son is engaged! We are so, so happy with his upcoming marriage to a lovely girl who loves him and makes him happy. The joy of planning and anticipating a wedding for our child ( who is a grown man) is being clouded by the issue of dementia. Thankfully, our younger members of the family are fine cognitively, but the question of my 86 year old mother who does suffer from dementia attending the wedding is remaining unanswered.

The wedding is planned for September, 2011 which is a long time away from now. We have no way of knowing how Mom will be at that time. Some of the variables of her ability to attend are also complicated by the wedding's venue-- a 5 hour trip from the nursing home where she resides. She would need to travel for 5 hours, attend the ceremony and reception and then either return to the nursing home that night, or stay in the hotel overnight and return the next day. We would have to hire an aide to help her (and free me of these duties while trying to be the mother of the groom) and we would need to hire a driver for the trip home since we will be staying the weekend. As I write this, it sounds daunting for her and the event is nearly a year from now.

My dilemma is based on my wish/ prayer that she be included in as many family events as possible. She is still alive and can still recognize family members and enjoys their company. Do we have the right to deny her that privilege because it will be more difficult for us?! When do we stop taking the easier way out in our attempt to keep her on an even keel? What is our motivation? and whose needs are being served? How much of our preventing a meltdown from her is based on our own need to be unfettered at a fun event? Are we wrong in wanting things to go smoothly, or are we looking for excuses to keep her away because it means more work from other family members?

I don't have the answer and will not for several months. We are overjoyed by the upcoming event but the questions and the sadness they evoke blend with our elation while we pray for the wisdom to do the right thing.

How to Answer?

The question that was posed tonight was asked and answered hundreds of times before, yet it hasn't gotten any easier. Mom called and wanted to know why she should spend the end part of her life (her words, not mine) in a "cheesebox hotel room" instead of living with her family.

She never calls the nursing home what it is--she almost always refers to it as a hotel--I'm not sure whether she honestly believes she's on some perverse vacation, or whether her denial serves her in this way. I tried valiantly to sidestep the question but she kept asking and presenting a thoroughly thought out set of reasons for living with me and Larry.

1. She believes that she did everything right in her younger days and now it's time for people to help her out.

2. She thinks that she can help me with chores and cleaning, so it would make my life better.

3. There's no reason for her to stay in the hotel when she should be surrounded by family.

All of this sounds great for HER! It doesn't address the impossible changes that would happen to ME! I could never afford to hire people to stay with her, so I would need to stay home all the time or take her with me where ever I went. She would not comply with showering or taking meds the way the nursing home can manage it. Larry and I would never be able to visit our kids because we have nobody else to relieve us when we want to see them, or go on a vacation.

Now, all of this sounds terribly selfish, I also realize that I have no socially stimulating activities for her, so she would just sit in our house all day waiting for me to talk to her or take her somewhere. I cannot trust her to stay home alone, since her vision and forgetfulness pose numerous hazards--not the least of which, she could forget that the stove was on, as she did in her own apartment.

Her carefully thought out presentation to me is haunting. I pray that this one time, the dementia actually helps her forget our conversation, because I don't think I can explain the reasons to her without losing my mind. What you know intellectually, and what you feel emotionally are sometimes in conflict and there is no way to solve that.

The Tenderest Moment

As I visited my mom and uncle in the nursing home I was privileged to witness such a sweet moment between them. They are probably the most devoted brother and sister that I have ever seen, and have really spent most of their adult lives living closer and sharing more experiences than most siblings ever do.

First, my uncle was still in bed when we got to his room. My mom sweetly kissed his cheek and whispered how she wishes he'd feel so much better each day. He gently kissed her cheek and told her that he wishes every day that their old age lives could be different. Later, after lunch, he needed to wash his hands. She so tenderly moved his wheelchair to the sink and got the soap on his hands that I nearly cried, but felt like a voyeur watching them with this simple task. She helped him get the paper towels and made sure that his fingers (gnarled with arthritis) were dry. Amazingly, she commented that he dries his fingers (one at a time) just like their "Papa" always did--amazing, because she remembered something meaningful from their past!

Finally, she commented that their father was the most patient person she ever met.

This seemingly mundane snippet in the day was so tender and loving that even my mother's roommate's mother had tears in her eyes as she witnessed it. These small moments of humanity and love bring new meaning to the day.

The Unpleasant Surprise

Today I took Mom on "an adventure" as she called it. It really wasn't such an adventure, but rather, a trip to the local diner and then to the audiologist for hearing tests and checks on her hearing aids. En route to the diner (Mom's favorite place to eat out) I drove past the house that I grew up in--the house that Mom lived in for 45 years, first with our entire family, and then finally, just with my uncle up to 7 years ago. I stopped in the driveway and the following ensued:

Mom: " Why are we stopping here? Who lives here?"

Me: " This is your old house."

Mom: " Are you sure?"

Me: "Yes, I'm sure--remember sitting on the front porch? You lived upstairs and Uncle Frank and Aunt Sylvia lived downstairs."

Mom ( with a blank look on her face and a shrug of her shoulders): I really don't remember this at all."

Ahhhh-- yet another unpleasant surprise as part of the ongoing changes that occur all too often. Slowly but surely the threads of our shared past are unraveling. The woman with the most wonderful memory can't recall the house where she raised her children and sat Shiva for her father and husband. I can live happily without more surprises like this one!

And yet, the rest of the day was successful--we lunched and talked briefly and took care of the hearing aids that have not been functioning correctly for quite a long time--in all, an okay day if I can forget what she has already forgotten.

How Should I Answer This?

Each night a conversation on the phone keeps me awake with worry. Mom calls or I call her between 9:30 and 10:00 PM. She needs to hear my voice each night before going to bed, and I am happy to offer her that connection. However, the caveat in that conversation is that each night she asks " When can I finally get out of here (the nursing home) and go home?" I often respond with the evasive--"we'll see"-- the same phrase that she used so many times on my brother and myself while we were growing up, and we hated it! She recently began asking to come live with me--something she always said she wouldn't want. This is the dilemma. How do I answer that? I know intellectually that I can't really provide all that she needs right now without essentially tabling my own life and offering her no social interaction except her contact with us. She needs professional people to manage her medications (she would fight with me about taking them); she needs professional people to insist she take a shower (she might not be able to get in and out of our bathtub to shower, and would fight with me about the need for one); she refuses to have her clothing washed, but the aides in the nursing home insist, and get to do it; when she gets sick, I would not be able to get her to the doctor because she would not agree to go (this has happened before); she cannot be left home alone--so I would need to take her everywhere with me and Larry; she cannot travel long distances ( we would not be able to visit our out of town children and grandchildren ); and my brother is not willing or able to give me the respite I might need from the daily life of mom living here.

So, how much of this sounds selfish and how much of this is the reality that she really needs professional care that only a nursing facility can offer since she hasn't the financial resources to pay for help in the house. The question of the day, night, week and month is how do I answer her plea for escape from the nursing home? Even when I attempt to explain, she forgets the conversation and we repeat it each evening. I am at a loss for the "right" answer. I want to be sensitive and loving and none of this ever sounds that way. I muddle through each night and then agonize that I am STILL not the daughter I want to be.