The Best is Yet to Come

Carol and Lou deMoll, were high school sweethearts. He was the football captain and president of the class. She was captain of the cheerleaders and the lacrosse team. They graduated from high school in 1942 and married in 1947 after his stint in Europe in World War II. They are now in their eighties. Here they are circa 1976 when Dad was inaugurated as President of the American Institute of Architects and then in 2004 at the Philadelphia Orchestra - one of their last major outings together.

 

May 21, 2006

Dear Friends who know and love my parents and the Rose Valley House –

This spring Dad made the decision to sell the house he began to design and build 57 years ago and which we all grew up in. The upkeep has become way too much for him. It is, in fact, already sold to a wonderful sounding blended family with 6 teenagers. A family found for them by their
mutual cleaning person. The new folks are keeping the pool table, the piano and even, if all goes well, the St. Bernard!

Mom and Dad are moving into White Horse Village, a retirement community where they already have some friends about 15 minutes away from my youngest sisters Lauren and Meg. Dad will be living in an apartment. Mom is making the long dreaded move into the dementia unit.

While in many ways, this move is breaking our hearts, it is clear that Dad no longer has the energy to keep taking care of the house or of Mom, despite the extra help he has most of the day, both hired and from Lauren and Meg. He has done a sweet and fabulous job for Mom and he is very very tired.

It is very much his decision to do this. He's also giving up driving since his macular degeneration has suddenly taken a huge turn for the worse in stress of the last couple of weeks. He is now mostly blind.

I am flying east tomorrow to help get Mom ready to move on June 3 and help Dad deal with the challenge of telling her (over and over) of the changes. Dad will move sometime over the following week or so. They will only be about 150 yards apart in their new digs. We are praying that the social benefits and relief from responsibility will make up for the loss of the familiarity and beauty of that green acre they have lived on since I was a baby.

On the weekend of June 17th, 30 or so of our kids, spouses, and cousins are gathering for a house party to help us mourn, celebrate, love each other and move on. A wake. Immediately after that, the five of us siblings will stay to divide up the remaining material things, sort through memories, and get the house ready for cleaners by about the first of July.

Thursday, May 25
Since I’ve arrived there have been references by both Dad and Mom about the move. It is clear he’s been talking to her about it. Mostly she’s been vague and accepting. Not endlessly repetitious, but rather calm. I thought perhaps we’d skated through that initial minefield.

But at dinner tonight we were suddenly talking about the move – and she was hearing it as if for the first time. Pain. Disbelief. Rebellion. “But I could drive,” when told of Dad’s inability to drive or care for her or the house anymore. As usual it works to explain his need, his deep tiredness. She’ll do what she has to for him. But she kept looking around poignantly – “I can’t leave this,” she whispered every few minutes. I was in tears again, my heart breaking for her. Dad was sweet and gentle, patting her hand. “But we’ll be together?” she asked. Sometimes we were honest about that, “You can visit him,” leaving out that she can‘t go to him whenever she wants. Mostly we tried to emphasize the fact that they’ll be in the same place but not that they’ll be in different rooms with different rules. Such a dance of truth and comfort. She was stricken and so were we.

This morning dad and I will go to visit with the nursing staff in the dementia unit to talk over the move. I’m glad we had last night despite its pain – it seems more real and honest to have these feelings out in front between the three of us at least, rather than the vague acceptance of the previous night. I can be very present to my own pain of the process now.

Friday, May 25
The visit with the White Horse Village people was intense. I was fighting tears so much that I was hoarse, determined not to break down again there like I did in front of Dad the first time I saw the place. We asked a lot of questions and Dad signed a lot of forms, me pointing out each time where the line was that he should sign on.

Then we went to Mom’s room and Dad told me how he’d imagined it all and what we could bring. I was relieved to see a tree with red leaves outside the window. It isn’t the beloved Japanese maple she exclaims about from her bed every day (“Look! The leaves are dancing at me!”) But it seemed like a good omen, nonetheless. And, yes, we can have a birdfeeder outside the window.

The move came up again at dinner. Mom more angry than sad this time, “Is that where you’re going to put me away?!” When I say that Dad is definitely moving so if she were to stay here, she’d be without him, her resistance subsides for the moment. But it is definitely sinking in. Luckily we can talk now about details in front of her. I couldn’t imagine how that was going to be managed in secret.

Saturday, May 27
I just got Mom showered and dressed. I’m not very practiced at it so it seems easiest just to strip down and get in there with her. We sang Row, Row Your Boat and Jingle Bells. She harmonized!

Monday, May 29
I am beginning to sort through her clothes and getting ready to iron on name tags. Ugh! Also collecting the little things that will make her room full of her life.  When I showed her the framed photo of her as a bride she exclaims, “Oh! Did I get married?” “Yes!” I respond. “And you had five children.” “I did?? Does Lou know??”

Natalie, their cleaning lady who found the house buyers and will continue to clean this house for the new family, told me today that she was talking to Mom and Dad a few weeks ago and out of her mouth popped the words, “Don’t worry, Carol and Lou, the best is yet to come.”

Thursday, June 1
Dad has kind of collapsed today - trying to get too much done. The heat doesn't help. Mom's caregiver had called to say she would be late so i had to get Mom dressed and while I was starting to do that (and talking to Cath on the phone) Dad came in almost in tears because he couldn't carry the garbage out and down the hill and yelling at me cause there was so much garbage. I reminded him that it hadn't been picked up Monday cause it was Memorial Day and gave him some Rescue Remedy at which point he said he was mostly afraid he wouldn't be able to handle independent living. I pointed out that garbage would be much simpler and closer in the new place.

And then while I tried to eat breakfast he was fretting at me to get a deposit up to the bank - a big one with the money he needs to pay off WHV. Then the printer wouldn't print the copies of the scanned checks he thought he should have. Etc. etc. While I was out at the bank the caregiver took Mom out for a drive and the dog got out and Lauren had to bring her back up from School. She gave Dad some iced tea with sugar which helped him a bit. And then I finally got him to lie down for a nap and he slept all morning and has gone down for another one right after lunch.

(And I only went through one red light in Media trying to find the bank.)

Friday, June 2
I just did one of the hardest things I've ever had to do. I had to get Mom to sign all sorts of papers - about 20 signatures - that consigned her forever. She knew what was going on and was NOT happy. Each signature meant going through the argument all over again and then we had to coax her into picking up the pen and finding the line, sometimes even reminding her of her name. It took at least half an hour - maybe more. And in the end I burst into tears and Dad put his head on his arms at the table and cried, all the while holding Mom's hand. He said later he felt like such a betrayer. We decided not to go up for pizza so I made sandwiches with the turkey for tomorrow’s lunch. And we each had a stiff gin and tonic.

We're mostly recovered now but it was a tough evening!

Saturday, June 3

It’s difficult to keep the spiritual perspective that this is all their curriculum – and ours – to deal with loss of independence and deep beauty and, most poignantly, each other and their shared life. Their journey is to live through it – ours is to watch, trying to help, trying to make it up to them somehow. Their life has been slipping away these last ten years. Dad told me last night that he had fallen out of love with Mom in the early days of it, sensing the changes but not being able to look at why. He reminded me that it was Lauren and Meg who insisted that Mom get a diagnosis – and that was well into the process. But in recent years, he is able to love her again. And, though, he didn’t say it, to take care of her.

But now even that is going. It is hard not to rage.

I find it fascinating that what moves me to tears every time is the loss of BEAUTY. It is so important to both of them, so intrinsic in this place they have developed together, where every view is deeply stirring, satisfying, breathtaking. As the house crumbles, it just becomes more like one of their beloved French farmhouses.

And every object is filled with love – even the old wine bottles and broken bits of pottery. The loss of that beauty is what wells up as a sob in my chest when I think or talk about it. The new place is fine. Nicely decorated – even to the Monet prints that Mom is sure are real (“It’s that sort of place,” she says.) And the trees that I fretted about are bigger than I remembered them from my first visit last November. But it is not beautiful – not even close. How will it source them? Will the social contact make up for that.

And can they survive the loss of each other?? Watching them holding hands last night and these other nights, Mom at her most clear, expressing her love for Dad. And Dad saying it right back. He’s so open these days from his old gruff, curmudgeonly self. Not for nothing do his grandchildren call him Grumps!

I keep thinking of the movie, The Notebook, where the husband sneaks into the wife’s bed in the nursing home. Will Dad find a way to do that?? Hopefully the staff will have seen the movie. Will they let him – encourage him even? Mom was the rule breaker. Will Dad have the strength and the will – I’m sure he’ll have the need – to give both of them the comfort they will crave?

“I realize now I’ll be living a double life,” he said last night.

Oh! Tears again. How do I bear it? Imagining all this. Each rip of the scene as we pack is such a rip in my heart.

Sunday, June 4
Yesterday was amazing and in the end good, though hardly easy. Lauren, Meg, Mike and Don came in and swooped up the unassembled Ikea furniture for Mom’s new room, as well as the paintings Dad had picked out to take over. Mom protested as they were moving the love seat out – it was a wedding present and has been in the house since the beginning. “Where are they going with that?!” she wailed.

Wanting her out of the way to avoid another trauma when we took the 50th anniversary photo montage off the wall, Meg impishly suggested they go into the living room and sit on the remaining couch so no one would take it (we hadn’t been planning to). They then all took off with Dad to go set things up. It was ok with me to stay behind with Mom.

They called about noon to say they were finished and would I bring Mom over to meet them there and we would all go to lunch. As soon as we drove into the entrance, Mom snapped to attention, “Oh, this is the place, isn’t it? You’re not going to leave me here are you?” “Not til Monday,” I assured her.

Of course, we had to go through the whole process again with her of the whys of the move, etc. etc. She balked furiously every few steps of the short walk in, “ I don’t want to do this.” “I can’t!” and “Why do I have to?” At one point when she saw the brothers-in-law and Dad talking she said, “Those men are making me do this aren’t they!?”

But she also said things like “I’m sorry I’m being such a baby about this.” We assured her that her reactions were entirely appropriate. Most poignantly, when she saw Dad’s painting of the view from their Swan’s Island bedroom on the wall where she can see it lying in bed, her whole body changed. She turned to him and said very sweetly, “This is hard for you too, isn’t it?” and hugged him.

I was in tears throughout though everyone else was haggard with the pain. We cheerily pointed out all the details and special touches – Dad’s pastels of each of us, the photos of her parents and the past and present Maudes. At the same time we were agreeing with her that it was the pits.

We then went out to lunch nearby, ordering comfort food. We managed a continuing mix of discussion about what was happening and some planning, all the while bolstering ourselves with humor and tenderness for each other. And Mom stayed present – and at that point more sad than mad. As Meg pointed out, strong emotions and adrenaline seem to bring her back to us for a while.

By the time we got back to the house, Dad and Mom fell into naps, holding hands in their bed.

Tuesday, June 6
Yesterday’s Moving Mom Day was challenging - no doubt about it. But it feels at the moment that we managed to traverse chasms and minefields with relative grace.

Lauren came over early on Monday morning and we collected the last of the personal things that needed to go with her and spoke again with our out-of-town siblings who really mind not being with us. Then Lauren went ahead to talk to the staff about the transition and pick up the flowers that Dad wanted in the room. So, in the end, I had the task of getting Mom and Dad literally out of the house. I will never forget the image of them going to the car with their arms wrapped around each other. I almost went back for the camera but didn't quite have the strength - you'll have to see it through my mind's eye.

As we went in, the head nurse, Drew, cheerily asked her how she was and Mom said, "Scared!" And, of course, we all were. But the day went very well. We had lunch together in the cafeteria where Dad will be eating some of his meals and then Lauren got them settled for a nap, while I took off for more of the interminable shopping.

I got back about 4 pm to exchange places with Lauren and found them huddled in the midst of a crisis - Mom had woken up convinced that Dad had left their marriage and she was furious that he somehow now wanted to come back. She was spitting mad. Dad kept saying that he'd never left her and patting her hand, he himself bowed with pain, because in a way he was about to. She kept withdrawing her hand and making very cutting remarks. Lauren and I kept acknowledging how angry she was. Luckily Drew came in after a bit and broke the spell. This time when he asked how she was, she said, "FINE," in a way that made it obvious she was not fine at all but wasn't going to say so in front of outsiders. After he left she carried on a little but the steam had gone out of it and she was beginning to head into sadness instead of such rage.

Then as Lauren left Drew suggested that seeing as how Mom was feeling, that maybe one of us did want to spend the night. Hurray! We didn't have to ask for it and I knew it would assuage everyone's our fears.

Dad and I ate with her in the unit dining room. Mom had two desserts. Then while I was getting her up and out, she suddenly went over to a table of other people and asked what their names were in her best social voice. It was a priceless moment. The staff and I were almost hopping we were so excited and they told me that this was the table Mom would be seated at in the future because these were all the conversational folks. (Some people definitely aren't!)

Meg arrived shortly after that from her last day of teaching so I took Dad home, leaving Meg with some private time. When I got back, Meg had her ready for bed and had to leave, so I sang to Mom for a while until she fell asleep. And then I settled in for the night myself on the love seat - tight but manageable - held in the comforting arms of that old friend. Aides came in every 3 hours to get her up to pee (we’d just been letting her wet herself – I had to struggle with some shame about that). She was calm and cheery each time, happy to see me in the room, but not too needy.

And this morning it was the same. So I helped get her dressed and into breakfast and left. I felt very disoriented as I drove out!

So we're over a big hump. We can put the stove knobs back on and leave the back door to the pool unlocked and not be on such high alert. And now the focus has to turn to moving Dad.

Friday, June 9
Mom seems to be adjusting as well as can be expected. We glow when she says, "This is such a nice place. I really like the people.” And we try not to take it personally when she says " I want to go home." It's hard to remember in the stabbing pain of that moment that she has been saying very same thing for the past year or more. Then we always figured she meant she longed for her growing up home in Swarthmore, or more metaphorically, home to her real self. She's so confused in time it can be any of the above. All week she's been asking if her mother has died yet – like it was 57 years ago when she was birthing me in one hospital and her mom lay dying in another. Other times she thinks she's having her knee operated on again.

In a way she will never be adjusted - the floating in time means that each moment is always new. With the increasing familiarity of the place, she usually recognizes Drew. But she also will express surprise and joy at me coming into the room after I've only been gone a few minutes to check on something.

Yesterday we took her for her first outing. It was weird when, like Cinderella, we had to rush to get her back for dinner when we said we would (though we could have called to extend it). And it was very poignant – bewildering to her - to drive past the house. “But, but…”

I’m trying to get used to the ankle bracelet she wears that sets off a shrill, very public alarm whenever she goes through a door off her unit at White Horse Village. There are three of those doors between her room and the doctor's office we visited on Wednesday.

Wednesday, June 14
Today my niece Maude and I proceeded to get locked with Mom in the little garden that’s part of her facility – knocking on a screen until an aide finally paid attention to the old man at the activities table who said that aliens and bad guys were at the window.

Mom is definitely having her ups and down. She had a great time playing balloons with an aide’s grandson one day; but the next day she greets me pouting with, “That little girl knows more than I do! Am I getting loony?” We go over and over the story – where Dad is moving, that the house is sold, how everyone is coming from all over the country this weekend, that we visit her every day and that one of us has been there every evening to tuck her in. “Oh,” she says. Hard. Hard. Hard.

Dad’s apartment looks lovely. His sculptures have found nice spots, the computer is set up in the den and his studio table with art materials and a half finished bust of his youngest granddaughter look inviting in the bedroom. He wouldn’t hear of anything but a single bed. “My co-habitation days are over.”

Monday was the day he walked out of the house – harder on me than him, I think. He kept saying he’d be back for the weekend, glossing over the fact that he would probably never sleep there again. We’d both been acutely aware of that fact the night before as we sat around the table talking. We’ve talked more the past three weeks than in the whole rest of my life, I think. What a precious gift of time!! On the way over we stopped to buy him a pair of shoes.

Today is Mom and Dad’s 59th wedding anniversary. A few of us are going out with them tonight for dinner.

Wednesday, June 21
Now we are well into taking apart the house. We keep discovering more treasure troves of ancestral photos and letters, some going back 150 years and the Civil War. The most poignant are the love letters between my parents during their war and my Mom's high school diaries of her first dates with Dad in 10th grade. We read snippets from these at the table, sometimes with my folks in attendance. Mom is beginning to absorb what is happening. Some days she sits on the couch in the midst of us going through things. Not upset any more - but resolute.

Monday, June 26
We met with Mom's caregivers for the first family meeting (They do them every three months). They feel she is doing very well and so do we. Though she wasn't in a very good mood about it today: "Take me home. This is a nice place but I’m finished here. We don’t need to pack anything, let’s just go.”

And in response to a comment about how nice his place looks, Dad said, "But I don't like living alone."

Tuesday, July 4
I’m home! After postponing Saturday’s flight, Lauren, Meg and I realized on Sunday afternoon that what was left was hopefully manageable by them and I arranged a flight out yesterday afternoon.

July 19
Dad reported that when he went to visit Mom this afternoon she was so absorbed in the trivia game the group was playing that she didn’t want to come sit with him. So he left, more than a little disgruntled. He’s going to try going in the evenings.

July 27
Email From: Louis deMoll

Hi all,
Perhaps it might be reassuring, even a pleasure for you to know this. As we sat out in the garden this evening, my arm around her, I realized that I have fallen in love with your Mother again. Often over the last few years my limited patience has given out. I have often been unforgiving and cross with her. Now somehow I find myself much more tolerant. I have finally stopped trying to correct her or answer specifically her questions. She never now can complete a sentence. In trying to express a thought she loses her place along the way.

And, she is so caring. Your Mother never wonders about what may be wrong with her but instead her concerns are almost always about the others she is with.

Can you imagine me sitting quietly, often as long as two hours in the evenings, holding her hand, delighting her time after time by repeating things that have happened with each of you or with others. The Bessens came by this morning and this evening I told your Mother about their visit a half dozen times. Each time brought a new smile and often a little shiver of pleasure.

Just thought you ought to know.

Dad