Honeymoon

The honeymoon is over! Inevitable, I suppose. Mom is regressing into her negative ways and I am bracing for another bumpy ride. She was in a sour mood yesterday. "I just stay in my room most of the time."

She complained about other residents taking food from her plate during meals, chocolates from her stash disappearing, her missing quilling tool. "I don't know why they have to move my things!" I became suspicious she was back to her old manipulative tricks when she said, "It's like a hospital here." (I have often told her I rejected facilities that were hospital like.)

To make matters worse, in three days she will be moved from her private room to a double. I had hoped she would get to stay in the private room longer, but Medicaid residents don't get those kind of perks and it was nice of them to let her move in and use it until a double became available. She recoiled at the news when I told her. It seemed prudent to talk with her about it; remind her that was the plan from the beginning.

In my dream world, I picture her happy and contented, grateful she gets to live in such a nice place and be well taken care of. Yet when I imagine what it is like for her, I am forced to recognize the immensity of what I am asking. Embarking on a new season in life is always challenging. In fact, I am in the midst of one since my husband retired earlier this year. It has thrown me for a loop; my world is upside down and I'm having trouble settling into a way of functioning with his 24/7 presence. How much more difficult must it be for my mother to leave behind her somewhat independent little life in the apartment over our garage and begin living with 10 strangers?

What a fate! Alzheimer's has forced our hand. She needs care. She can't live alone. There are two options: she lives with us or lives in assisted living. If she lives with us, I will grudgingly care for her, resentment will build as my life is sucked away little by little. She will leave this world feeling unloved. If she lives in assisted living, I will gladly spend time with her, delight in her. She will leave this world with a sense of being lovable and loved.

I will be there Monday for the big move with a prayer in my heart for Mom to find joy in the midst of circumstances beyond our control.


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Location:Gile Rd,Nottingham,United States

Guilt

They throw me off balance, hit me when I least expect them--the twinges of regret, the insecurity about my decisions. The GUILT. If I were a good daughter, I would take care of my mother. I would clear out the office, turn it back into her bedroom. Sacrifice my life to be here for her, no matter the cost. Images surface of managing her medications, overseeing her bathing, making her meals, doing her laundry, being unable to leave her alone for long periods of time. Putting her to bed, cleaning her dentures, repeating every sentence at least twice, sometimes thrice! Twenty-four-seven for who knows how many years. I know plenty of women do it. They make the sacrifice. Give up their lives to take care of their elderly parent.

It wouldn't be pretty in my home though. I wonder what it is really like behind closed doors for those who choose to make the sacrifice. It is crystal clear to me that I would go crazy! Mom would be a wedge in my marriage. Even if I were willing to sacrifice my life to take care of my mother, would it be fair to ask my husband to do it? And don't get me wrong, he is a gentle, loving soul. It's the stress of watching me slowly go crazy that would make it hard for him.

Mom is content at the Wellstone House. She feels good about herself. She is with people all day, every day. She freely gives and gets hugs. She is well taken care of--gets three meals and snacks whenever she wants, is bathed, and has clean clothes. She is liked and loved. It shows in her countenance. It doesn't escape me how endearing she is to me when I'm with her now. How proud I am of her ability to keep herself busy with her crochet hook, her quilling tools, and her pencils and paint brushes.

When the guilt hits and throws me off balance, I entertain it, examine it, and conclude I am taking the best care possible by providing such a wonderful home for her as Alzheimer's slowly steals her from herself and from me. There is an abiding sense of peace within my soul and my heart once again cries out, "Thank you God for leading us to this place."


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Location:Gile Rd,Nottingham,United States

Slip-Slipping

We spent one of our more sad family days today to say our final goodbyes to Mary who lost her six-year leukemia battle 7 days ago. Mom was ready to go when we picked her up. I knew the day would be challenging, but didn't anticipate just how much until we met Rich, Kim, Kyle, and Sean in the church parking lot and she didn't know who Kyle and Sean were. I thought I'd lose it there, before the funeral even began.

During the half hour wait for the service to begin, she was confused and childlike--clingy and fidgety, like a toddler. I think she knew it was Mary's funeral, but when she had no idea who her grandsons were and their children to whom she has sent monthly cards to for the past several years, it hit me just how quickly she is slipping away.

I noticed her pretending to know people, telling me she recognized someone's face as someone she knew, but just couldn't remember their name. Each time, I knew she could not be recognizing the face because it was someone she had never met in her life.

The day grew increasingly exhausting at the gathering after the funeral as I tended to Mom. I had to repeat things over and over. I couldn't leave her alone too long because she seemed to need to have me in sight. She wanted hugs from every male in the room. "My husband died a long time ago so I don't get man-hugs anymore!" she said to each one.

She said to Kimberly several times, "You look just like your mother!" However, Kim resembles Mom's daughter JoAnn, not Mary. I suspect Mom was having a hard time confusing JoAnn and Mary.

What must it be like to be with people you know you are supposed to know but don't recognize? And what will it be like when she doesn't recognize me any more?

I'm so glad Kim had a chance to visit her Great Grandmother yesterday. And it was special for Mom to see Kim walk into her room at the Wellstone House.





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Location:Gile Rd,Nottingham,United States

Broaches & Necklaces

Mom is happy in her new surroundings at Wellstone House. It shows in many ways. The blush on her cheeks, the broaches on her sweater, the necklaces around her neck all speak to me when I sit and visit. They tell me she feels attractive and like-able. She feels good about herself. It is clear she is well liked. I know she has much more socialization than she had at Peaceful Harvest and certainly more than she had living in the apartment over our garage. She brings it up nearly every time I visit. "I know you don't want me to come back and live with you." I always remind her it's about her safety, first and foremost. My heart aches for her in those moments though because I know how much she pines for her independence despite her obvious need for help.

Despite the positives, I still fight guilt. It usually attacks in the quiet moments of my day when my thoughts drift to Mom as I live my full life.




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Recipes

"Look at this, Donna. Doesn't that look good?" Mom turned my daughter-in-law, Addie's, Food Network Magazine so I could see the photograph of Paula Deen's Frozen Chocolate Mousse Pie.

I exclaimed how yummy it looked all the while confused. Why was she so interested in recipes? She doesn't cook any more. Perhaps it would be fun for her to do a little cooking, I thought. "Let me get a picture of the recipe on my phone and you can come to my house soon and we can make it together."

She studied the magazine cover, wondering if she might be able to get a subscription to it. She asked Addie where she might buy it. Addie told her the grocery stores carry them. "You can take some of my old issues, Gram."

On the drive home from Thanksgiving with Brian & Addie and the kids, Mom sat in the back seat looking at her magazines. "There are a lot of great recipes here, Donna. I'd like to copy some of them into a notebook. One of these days I'll have my own place again and do my own cooking."

I didn't have the heart to tell her the truth; tell her she will never live on her own again. In the meantime, I have another idea of something I can do with her when I visit--look through the Food Network Magazine and write down recipes together!


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Location:Gile Rd,Nottingham,United States

Visiting Mom

It makes me sad that there is very little to talk about when I stop in to visit Mom. I find myself longing for ideas of what we could do together when I visit. Nothing comes to mind. She used to love watching "Who Wants To Be A Millionaire" every day. On my last visit, I turned on her TV and discovered that show was on so we watched it until I left. She didn't seem to remember having seen it. "Do you want me to leave the TV on?" I asked as I gave her a good-bye hug. "No. Shut it off. It's just a bunch of noise to me," she said.

We recently removed her computer from her room. She has forgotten how to turn it on and how to play Mahjong and Bookworm. She crochets creations of her own design and glues them to watercolor paper, confusing it with the quilling technique she has done over the years--twisting strips of paper into flower petals and such and gluing them onto card stock.

I am so proud of her though as she perseveres through each day and keeps herself busy. On nearly every visit, she sends me home with pencil drawings that she is certain her great grandchildren will enjoy coloring. As I contemplate them in solitude, I recognize the labor of love and chastise myself for dismissing them and assuming no kid would want them. I resolve to make sure they get distributed and decide I will request more on their behalf. It even occurs to me I could sit and draw with her!

I feel her slipping away. I drive away from a half hour visit wondering what the future holds. What will it be like when she no longer knows who I am? How will I handle that? She is healthy as a horse, she will live a long time. Alzheimer's will be her demise. The thought makes me tremble as I try to shake it out of my head.








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Location:Gile Rd,Nottingham,United States

Pedicure

When I was a thirty-something mom, my mother was a fifty-something daughter who dutifully clipped her eighty-something mother-in-law's toenails. Just the thought of it always made me cringe! Ewwwe!

A little known fact not disclosed to novices making assisted living arrangements for a loved one is that only RNs can clip nails. I was shocked the other day when Mom said, "I asked if someone would clip my toenails. No one would, so I did it myself." Knowing she didn't have clippers in her possession, I asked how she did it. "I used my crochet scissors and cut off the one that was digging in to my other toe." Her voice betrayed a hint of that sing-songy, na-na-nana-naaa-naa sound.

I of course scolded her. I of course inquired of the on-duty attendant.
"I'm so sorry but we can't cut her toe nails. There is some one who comes in, I think every eight weeks or so. Do you want me to set her up?"

"No. Thank you very much. That won't work. Mom can't wait." She needed her nails cut, and NOW!

You guessed it. Yours truly sat on the floor and did the dirty deed! And it wasn't so bad. Surprisingly, it seemed natural to put the icing on the pedicure by massaging her feet with Oil of Olay body lotion. "Wow, I guess my feet are getting some pampering!" said Mom. I looked up and smiled as she gazed down at me with her wide, toothless grin.

It wasn't so bad. Even so, I cannot imagine a day when I would sit as my daughter clipped my toenails! Ewwwe!


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Location:Gile Rd,Nottingham,United States

Perm

Mom got her perm this morning! She refused to put her teeth back in her mouth for a picture though. We looked through her jewelry still hanging on her bathroom wall in her old apartment and she found a few things. She is looking more like herself again even though she is never really sure where she is geographically any more. I guess two moves in six months, plus the dreadful, aborted vacation to the cottage in Maine may have contributed.




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Location:Gile Rd,Nottingham,United States

Shower Every Day?

"Am I going to see Dr. Goldman?" Mom asked as we walked to the car.

"No. We are going to the doctor who looked at your face."

"I hate that doctor!"

"Mom! How can you say that? You saw him only once!"

She argued it didn't matter, she didn't like him and that was that! I let it go. We sat in the waiting room. She fidgeted. When the nurse called her name, she shot me a glance of reluctant resignation and we followed the nurse to the examination room. We waited some more. "I don't know why you don't like him, Mom. You didn't even talk to him the last time we were here. You talked to the nurse the whole time while he talked with me. You could have listened to him, you know." She just shrugged.

The hated dermatologist came in and exclaimed how good she looked as he grabbed his magnifying goggles. Mom pointed out the areas on her scalp that were healed. He inspected each one. "I'm very pleased with your progress. We'll keep doing what we've been doing and I'll see you again in two months."

"Does she still have to shower every day?" I asked. Mom was sure he'd change that. She resists daily bathing.

"Always, from now on, daily showers," he said. He looked at her and explained, "When you don't shower, bacteria begins to grow on your skin and will make you itchy. That's why you had all those sores on your shoulders and scalp. Besides, showering is good for your brain." Mom perked up at that as the doctor went on to explain how our skin's nerve cells get super stimulated when we shower which in turn stimulates our brain. He didn't know he had just touched a hot button with my mother. She has always wanted to do good things for her brain--crossword puzzles, word searches, watching PBS specials with Dr. Amen, "Change Your Brain, Change Your Life." I hugged that dermatologist with my eyes!

"Will she be able to get her hair permed now?" I asked. He saw no problem at all, said she could go get a perm that very day. Mom floated out of his office on a cloud! She had been waiting six months for the sores to heal so she could get her hair permed.

As we walked to the car, Mom said, "Now HE was really nice. I liked him, didn't you, Donna?"

"I thought you hated him?"

"That wasn't the same doctor I saw before."

"Yes Mom. He's the same one."

"I don't believe it."

We drove away in silence until Mom said, "Having a bath everyday won't be so bad, I guess."


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Location:Gile Rd,Nottingham,United States

When I'm 87

There's nothing like great grandchildren to brighten my mother's life! In celebration of her 87th birthday, I surprised her with a visit to my nephew Patrick's house. His five young children love their great grandmother and always make her feel so special by welcoming her when she visits. Patrick's brother Mickey and his wife and two daughters joined us as well. Mom got lots of hugs, homemade cards, and plenty of attention. The visit was short but sweet and on the ride home she exclaimed, "Well, that certainly was a very enjoyable day, wasn't it?"

I wonder what she will be like a year from now. As much as I wanted to get more family together for this yesterday, I didn't have much success. Her grandchildren are young parents and lead busy lives. I get how hard it is to make the sacrifice of our precious time in the midst of it all. A part of me is sad though. Sad that Mom doesn't rate high on her extended family's priority list. Next year, she may not remember many of them. Next year, I won't try to have any kind of celebration for her.

In a few days, I will be 60 years old. If God grants me long life, one day I will be 87. Will the people I have loved and served and lived life with feel moved to honor me or will they forget me?

I'm grateful we found The Wellstone House for Mom to live in. She's around people all day. She likes it there. I imagine myself one day being housed like that. Giving up all my belongings, reduced to a bedroom, a small wardrobe, tv, rocking chair, yarn, crochet hooks, and word search books. Reduced to waiting for people to come visit. Aging seems like a cruel joke life plays on us. Mom didn't see assisted living in her future. Thank you, Alzheimer's. In reality, even if I could have taken care of her, she would have been reduced to a bedroom full of minimal stuff.

Days like yesterday help I think. Mom felt special. I knew it was a good thing to do for her. It wasn't exactly what I had wished for, but I knew there wasn't much hope for getting what I wished for anyway! And as 5-year old Ava told us recently, "A wish is something you probably won't get. A hope is something you probably will." Dare I hope to be cherished when I'm 87?




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Location:Gile Rd,Nottingham,United States

Mom's Happiness

The sight of Ava and Anna running to give my mother a hug always elicits a huge smile on my face and deep gratitude in my heart. "Mamie!" they say and fling their little arms around her neck. They pause to give her a smooch on her lips before they let go and explore the latest crocheted creations on her window sill. In those moments, I wonder if their absence in her life during her six months at Peaceful Harvest factored into her unhappiness there. She saw very little of them during that time. I know she missed them.

It gives me pause as I contemplate how seeing my mother happy comforts me. When did I take on the responsibility for her happiness, I wonder? Was it when I was 17 after that fateful day when Mom was traumatized by her two twenty-something adult children when they verbally attacked her? That day did change her and me, for sure. I became protective and motherly toward her. She began to rely on me for emotional strength. But she did have Dad so I wasn't concerned about Mom's happiness quotient.

After Dad passed away in 1994, Mom had other family members who needed her, some lived with her off and on. I saw her often, but didn't have to take care of her. Then she moved in with us in 2003. Everything changed. I went out of my way to help her feel lovable, accepted, loved. At times it made no difference, especially in the first year when she struggled with insecurities, feeling she was in our way. It seemed a weekly occurrence talking her down from emotional meltdowns. I used to say, "Mom, you are not in the way. It is great that you are right here, across the driveway, not 2-1/2 hours away."

Over time, I longed for her to just be happy. In moments of exasperation I said, "Mom, only you can make yourself happy, I can't." But I always suspected I could do more to make her happy. If only I would spend evenings with her playing dominos or board games. Perhaps then she would be happy. Or if only I would be more interested in some of her favorite pastimes, paint a picture with her, learn to crochet--we could do those things together. But I never did any of those things--just a bunch of "if-only" regrets lingered and, at times festered.

Her six-month stay in Charlestown this year brought those longings for her to be happy to a new level and revealed a darker side of myself. At times, perhaps I was downright angry with her. "I wish you would embrace this new phase of your life, Mom," I said more than once when she would have nothing but complaints. I understand better now why she couldn't. She needs to feel loved and accepted. That's what Wellstone House does for her. Every time I visit, she is content, has no complaints, enjoys the people she lives with and feels loved by each and every staff person. Getting hugs and kisses from two little great granddaughters--probably the best medicine there is!

We both have been set free to enjoy and embrace the present. It feels good.



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Location:Gile Rd,Nottingham,United States

No More Debit Card

"So Mom, now that you are living here at Wellstone House and I'm keeping track of your checking account, I was thinking it might be better for you to have cash rather than using your debit card. What do you think?"

"I'd like that much better. I never have cash any more," she said.

I pulled her wallet out of her purse, quickly found her debit card wrapped in her latest receipt from the $65 Ben Franklin's field trip a few days earlier and stuffed it into my jacket pocket. Mom watched me put the two ten dollar bills into the outside zipper section of her wallet. She expressed relief at not having to deal with her debit card any more.

When I saw the charge in her bank account, I knew it was time to find some way to keep her spending down. She had purchased things she didn't need--a $10 magazine; a short-sleeve summer top with shiny, metallic dots; a "Pink Pig" punchneedle embroidery kit which she doesn't do; an "itty bitty baby" clothes crochet book which she already has; among other things.

It turned out I had endured needless anxiety anticipating the inevitable day when I would have to take her debit card away. What a relief!



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Location:Gile Rd,Nottingham,United States

Surprise Visit

Mom brightened with a broad, toothless grin at the unexpected sight of me waltzing into her room Wednesday morning with my afghan crochet project in hand. A quilling book sat open on her plastic adjustable side table she had purchased from a TV ad a few years ago. I settled into her comfortable platform rocking chair. "This is a nice surprise!" she said.

As I pulled out my afghan and crochet hook, I explained I had an hour between my doctor's appointment and my haircut, so I decided to spend it with her. Mom studied the open page in her quilling book. "This looks easy enough. I think I'll make this one." Miniature pumpkin earrings with googly eyes popping out on minuscule springs dangled from her ears. She found them unopened in her bed stand drawer with no idea where they came from. That drawer was empty the day we moved her in.

Much to my surprise, I enjoyed sitting with Mom. It was quiet and relaxing. The owner stopped in to introduce himself. The director, Amy, came in to tell Mom the plan to get the doctor-ordered blood work done. When Amy saw Mom working on her quilling, she stooped down to take a closer look. She seemed genuinely interested in this unusual craft. The whole experience was easy going, relaxing, and left me with a sense of what life there is like for Mom.




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Stress-Induced Dermatitis?

Mom saw a dermatologist yesterday, her third doctor appointment in the two weeks since she moved to Wellstone House! One more to go on Monday afternoon.

While living at Peaceful Harvest in Charlestown, Mom developed a skin condition. She had scabby sores on her shoulders and face that she constantly picked at, making them bleed. It began shortly after she moved on March 28th and blossomed to the point that she looked positively diseased. In late July we took her sister Flossie, visiting from Florida, to see Mom. We greeted Mom where she was sitting in the living room and I gasped at how bad her skin had gotten since we had seen her seven days earlier; red scabby sores covered her face. Flossie was afraid she might be contagious, but we had been assured no one else in the place had anything like it.

That day, I insisted that she be seen right away. One sore just above her left eyebrow looked red, puffy, and was warm to the touch. It was no doubt infected. Within a couple of days, Mom was on an antibiotic and had an appointment with a dermatologist in Keene who prescribed a cortisone cream to be applied 4 times a day and basically that was all that was done for her. I was told it was stress-induced dermatitis.

This whole episode underscored my frustration at being two hours away from Mom, unable to take her to doctor appointments and really know all that was going on. It wasn't about being in control; it was about being there for Mom, being an advocate, talking with her doctors face to face. I had abdicated her care to the Peaceful Harvest staff, people who were likely competent enough to handle it yet not invested in my mother's care like I was.

That visit in July was probably the beginning of the reservations that began to swell up inside of me twisting my emotions into knots, unsure of how to solve the dilemma. I tried to envision moving her back to her apartment over our garage. That wouldn't work. She wasn't safe up there alone any more. I saw our office being transformed back into her bedroom and her living with us 24/7 and knew my sanity was at stake, as well as my marriage. I began to pray that Mom would simply settle in and make the most of her new season of life.

I'm so thankful we found a good solution and it feels wonderful to accompany her to her doctor appointments, stop in and see her whenever I wish, and have her nearby. Her skin condition has calmed down. The dermatologist she saw yesterday told me Alzheimer patients will often pick at their skin and cause sores. He prescribed a new topical cream and insisted she be showered daily with Oil of Olay body wash until he sees her again in three weeks. If we can stop her skin from feeling itchy, she may stop causing scabby sores that she can't resist picking at. Let's hope!


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Location:Gile Rd,Nottingham,United States

A New Season

Yesterday was the first sunny day since moving Mom into Wellstone House. I heard this weekend was supposed to be peak foliage in New Hampshire, and with rain in the forecast, we decided to take Mom on a foliage ride. Buck had scoped out a 2-hour ride through Deerfield, Northwood, Pittsfield and back through Rochester.

"My mother was crazy for foliage rides," said Mom from the front passenger seat.

"I remember those rides," I said. In truth, I think I remember them because of the small black and white images in Mom's box of pictures of Mom and Gram standing beside our 1954 Studebaker at a rest area we stopped at for a picnic lunch. Dad didn't leave the house without his Polaroid instant camera. And lunch was likely a loaf of Wonder bread, a package of veal loaf to slap between two slices of bread, some Wise potato chips and grape soda. At least that's what I remember of the many roadside picnic lunches from my childhood.

Mom exclaimed at the beautiful colors. "I've never seen trees look like this!" After Buck asked a couple of clarifying questions, she meant the trees we saw that were half red and half green. When Buck wondered if the ride was getting too long, Mom piped up, "Nope. I'm just along for the ride and I love it!"

From the back seat, I could sense she is happier than she's been in a very long time. I suspect even happier than when she lived over our garage. I know that things that used to annoy the heck out of me now endear her to me. How does that happen? In fact, I find myself more present with her now, whereas I used to be miles away in my thoughts during our numerous outings for doctor appointments, grocery shopping, or trips to Walmart. I resented her intrusion into my thoughts with inane, incessant comments about the stupid trees. I would think, "If she comments on one more tall tree, I'll scream!" Now, I'm searching for trees to point out to her!

It seems being a caretaker sucks the life out of relationship. Now that I'm not her caretaker, we are finding new life as mother and daughter. I'm still here to protect her and oversee her care without the daily grind of it all. I just feel blessed! It's a new season.


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Location:Gile Rd,Nottingham,United States

Church

Mom is settling in nicely at The Wellstone House. I love that she is close by. I love that I am in control of her doctor appointments. She told her primary care doctor the other day, once again, "I'm so glad God gave me Donna. What would I do without her!"

Because Mom enjoyed going to church every Sunday during the 5-1/2 months she lived in Charlestown, I had hoped to find a way to get her to church now that she is living in Raymond. She doesn't like my church because we don't sing the old, traditional 4-part harmony hymns; and the music is too loud. So we visited the Raymond Methodist Church this past Sunday. I love our church, Manchester Christian Church, and yet it was fun to visit an old traditional Methodist Church with the floor-to-ceiling pipe organ, the wooden pews with the velvet covered seat pads and the song numbers posted on the display board.

As we sat listening to the organ music before the service began, my thoughts drifted to my earliest church memory--attending the Claremont Methodist Church when I was four. I have never forgotten the big maroon velvet armchair I sat in for a pre-school Sunday school class where a nice lady introduced the three or four of us to the idea of God's love. I'm not sure, but I think they had used the choir room as a make-shift nursery classroom. Imagine Lily Tomlin as Edith Ann in the big rocking chair! I still remember caressing the soft texture as I sat there and believed God lived in that church!

Mom felt at home. "I've gone to the Methodist Church since I was a little girl. I'm so happy to be here and to sing the old songs," she said to the minister. Much to my surprise, there were three people there who Mom knew from the nine years of going to the Raymond Senior Center. They flocked to her with warm greetings. Mom had no idea who they were.

When we left, I tried to jog her memory of downtown Raymond by driving past the senior center, pointing out the bank, the common, the luncheonette where she used to order a grilled cheese or a plain hot dog. "Do you remember this, Mom?"

"No, I really don't remember going to the senior center, Donna."

A nice lady who lives close to The Wellstone House offered to give Mom rides to church. Mission accomplished! Thank you God!




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Tartar Sauce

My whole life my mother has detested tartar sauce. Ordering fish at the Weathervane, she always says "Don't bring me ANY tartar sauce." Just the thought of it makes her wrinkle her nose, shake her head from side to side and exclaim, "Bleckkkk!"

So imagine my surprise when we stopped at MacDonald's yesterday for lunch and she opened her fish sandwich and tartar sauce was oozing out. I was about to say, "Oh Mom, so sorry. I forgot to tell them no tartar sauce." But she pulled up the top, looked right at the cream colored gob, and said, "I can't get this piece of fish centered on the bun." No repulsive expletive. Nothing! So I said nothing. Lately she's been eating food she has refused her whole life. I'm not sure, but I wonder if she has forgotten what some foods are.

I helped her get the fish centered on the bun and held my breath as I watched my mother take a huge, tartar-sauce-laden bite. I was certain she would instantly spit it out, make a scene like Tom Hanks spat out caviar in one of my favorite movies, "Big." I was sure she was going to wipe it off her tongue, gagging and spitting, and reaching for her Diet Coke. But no, she just munched it down and returned for more.

"How's your sandwich, Mom?" I couldn't resist.

"It's very good!"

The tartar sauce spilled out as she ate and covered a couple of her fingers. She said, "They sure put a lot of butter on this sandwich!"


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Prayers Answered

Yesterday, Buck and I were up and on the road in separate cars at 8:00. The day had finally arrived to bring Mom back to us; the day that seemed so long in coming, especially for Mom. My thoughts were filled with gratitude for answered prayer, mine and Mom's.

While driving, a recent memory replayed in my mind of Mom giving me a hug goodbye as we left after a Tuesday visit a couple of months earlier and saying, "Maybe one of these days you'll come and take me outta here!" I had cried too many times driving away from visits up until then, so sorrow had morphed into exasperation at her unwillingness to embrace being at Peaceful Harvest--to make the most of this new chapter of her life. I had implored her to try to make friends. "No one talks to me, Donna. How am I supposed to make some friends?" she would say.

My prayer after each visit was for Mom to adjust to being there and to be thankful she was back in the Connecticut River Valley where she had lived her whole life, near her son and his grandkids. It was my brother's turn to be there for our mother. Her prayer always was to be back with me.
It was the traumatic Peaceful Harvest Maine vacation week that tipped the balance in Mom's favor and I resolved to do whatever I could to get her back close to me. She had been so confused about having been invited along with four other residents to go to a small cottage on a lake in Bridgton, Maine, that she grew increasingly agitated and uncooperative. We finally rescued her on Wednesday of that week and drove her back to Charlestown. Crying silently in the back seat all the way back to Charlestown, I knew we had to figure out something else.

As I left Mom at The Wellstone House yesterday afternoon, my heart swelled with gratitude for answered prayer. As a friend recently pointed out, the time at Peaceful Harvest might have helped pave the way for Mom to embrace Wellstone House more readily than if we had moved her directly there from her apartment in our home.

I slept soundly and woke up today with a joyful heart looking forward to picking Mom up for her 11:30 appointment with her old primary care doctor and hopefully get to the bottom of her six-month long skin condition that has left scars on her face and continues to rage into her hairline and scalp.


- Posted using BlogPress from my iPad

Location:Gile Rd,Nottingham,United States

Countdown Agony

We are T minus 12 hours and it couldn't be more stressful with a flurry of emails from the place Mom is moving to (Wellstone House) and from the place she is moving out of (Peaceful Harvest)! I thought this part would be easy. Peaceful Harvest knows what admission paperwork is required and it seems it should be a simple process of pulling out a file folder, stacking papers in a fax machine, dialing, and letting them rip. Yet, at the 11th hour, no the 12th to be exact, Mom's admission to Wellstone could be in jeopardy because they don't have the state required medical documentation yet. Arrrrrghhh!

Well, we are moving her tomorrow even if it means she spends a couple of nights with us. It is a mystery why this is not yet done. Not to mention, extremely frustrating. But this too shall pass. In short order, Mom will be settled in and we will find a rhythm that works to help Mom feel lovable and loved.

Tonight I'm stressing over the invoice from Peaceful Harvest for the first 15 days of October. I've been told they can't charge a Medicaid patient for days they are not there and I will have to have that difficult conversation tomorrow. Not my favorite thing to do.


- Posted using BlogPress from my iPad

Location:Gile Rd,Nottingham,United States

Waiting is Over

Mom can move into Wellstone House this week! In fact, the details have been ironed out and we will move her this Thursday, September 27th. I am thrilled and can't wait to have her nearby.

It still amazes me the amount of work it has been to get her qualified for Medicaid. Of course, wanting to move her on the cusp of the approval complicated things. I am amazed as I think back over the process, beginning in July to compile five years' worth of bank statements and cancelled checks by searching through her records, contacting the banks, printing statements and cancelled checks from the bank websites. Pulling together copies of legal documents like Dad's death certificate, her letter about Dad's pension amount she would receive, her Social Security benefits, and health insurance premiums, and on and on. Then to spend five hours photocopying 1,000 pages of documentation which I carried in a Staples crate to meet with the NH DHHS social worker. It's been quite a process.

Soon, Mom will be settled in and we can all take a deep breath and be thankful to God for all of our blessings throughout this process. I recall how Mom loudly prayed as I turned out the light and left her bedroom the last time we had her here for an overnight, "Dear God, here I am at Donna's house again. Oh how I wish I didn't have to go back to that place." It seemed a bit manipulative at the time and I thought how my prayers were contradicting hers when I prayed "Dear God, help my mother accept where she is." So I have to laugh now as I realize how God can take all of our prayers, know our heart's deepest desires, and make it so.


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Location:Gile Rd,Nottingham,United States

Waiting on NH DHHS

At the mercy of faceless bureaucrats can be quite unsettling, I'm finding. The days tick by, September is over in six short days. Mom's money is gone. If the New Hampshire Department of Health & Human Services does not approve Mom's medical evaluation, which was done on September 11th, I'm not really sure what happens. Perhaps we will have to pack her up and move her back to our house. We certainly can't pay to keep her where she is. I know I can trust the big picture to God, that ultimately what is supposed to happen will happen. It would be a whole lot easier though if it would all fall into place! The social worker who processed Mom's Medicaid application tells me to keep bugging the woman in Concord. The nurse who did Mom's medical evaluation tells me to keep bugging her. I've called and left two messages; of course she never answers. So I discovered on the internet a complete list of New Hampshire DHHS employees and their contact information. Now she has two phone messages and an email from me. Is it really true what they say about the squeaky wheel? We will find out!
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Location:Gile Rd,Nottingham,United States

Change Is On The Horizon

As I sit here on the back screen porch on this warm, September afternoon, the warmth of the sun on my face, I know my life is about to change once again. For the past six months, Mom has been two hours away. Phone calls have been the only interruption besides our weekly trip to visit. Within the next 10 to 14 days, we expect we will be moving her to the Wellstone House, 10 miles away in Raymond. Now, I will be on call. Now, I will have to factor Mom back into my life. She won't be across the driveway anymore, but she will be nearby. Several times a week, I will be compelled to visit. I will be back to managing her doctor appointments and being that protective overseer of her care that I've been for nearly a decade. Even though it was nice having a break from it, I look forward to it again simply because I know what it means to Mom. She said so many times over the past nine years, "I'm so glad God gave me my Donna! Whatever would I do without her!" She found out. She wasn't at all happy without me. I'll be happier because I know she will be.
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Location:Gile Rd,Nottingham,United States

Where We Are Now

I've been wanting to keep up with this blog, but it's been hard. I recently read an article about iPad apps for blogging and decided to take the leap.
Now, a short recap of where we are with Mom.
In March of this year, my niece Carly sent me a private Facebook message. Peaceful Harvest in Charlestown, NH, an assisted living, where she worked had a bed available. She would love to have her grandmother move in so she could take care of her. We visited, Mom liked it, we moved her in. I had high hopes. Everything went pretty well until Carly quit in June. Mom began to talk about moving back to her apartment every week when we made the 2-hour drive to visit. She would say, "Maybe one of these days you'll come and take me out of this place." I began to ride home in tears each Tuesday.
Then the trip to Maine happened. Mom was confused why she was there. She didn't like it at all. The cottage was small and crowded with two staff and five residents. She had a meltdown that Tuesday evening. We drove up to Bridgton, Maine to get her and took her back to Charlestown.
Long story short, we are in the process of moving her back locally to a 12-bed facility in Raymond called The Wellstone House. Just keeping our fingers crossed that it can happen. We are awaiting a bureaucrat who sits in an office in Concord, NH to sign off on her medical evaluation for the Medicaid and NH CFI approval. She has an appointment on Monday afternoon for Dr. Caloras to give her a physical and prepare her discharge from Peaceful Harvest. So we are getting closer!
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Location:Gile Rd,Nottingham,United States

Ache

I look across the driveway as I
pull down the window shade.
It is dark;
no one is there any more.
A wave of regret courses through
my body,
an ache deep within.
It's a relief.
I miss her.
Freedom is nice.
Doubt nags at me.
Does she feel abandoned?
Is she happy?
Did I really have any choice?
The day would have inevitably arrived
and the outcome might not have
been so positive.
She is at home in her new surroundings.
At home in familiar geography
she no longer recognizes.
She just knows she is home.
How long will it take for the doubts
to disintegrate and I am truly free
to embrace joy
once again?

The Sisters Five

[I wrote the following after taking Mom to visit her sisters in September.]


It is a perfect September day.
The gas tank is full, cash in my pocket.
Mom and I set out for the two-hour drive to
Elmwood Skilled Nursing Facility
In Claremont, New Hampshire,
Her twin sister, Midge Riviezzo's new home.
We stop in Newport to pick up her sister Florence
And arrive at Elmwood at 1:30, a half hour early.
Sisters Anna and Ruth are in Uncle Benny's car
Waiting for us.
We find Midge sitting in the day room where a
Game of bingo has just begun.
She shuffles toward the private visiting area
Grasping the handles of her walker with wheels.
They sit at the round table.
I stand and lean against a desk.
I listen and watch these five sisters.
At first they converse as a group,
But soon, side conversations take over.
There are a lot of "Huh?'s" and
Plenty of repeating of words
And sentences amidst raucous laughter.
I think of the years from 1960 to 1970
When I played at their houses with my cousins.
Midge gainfully employed at Goodyear.
Flossie working for the eye doctor in Lebanon.
Ruth working as an LPN at the nursing home.
Anna as a dietician at the hospital.
Mom doing private home health care.
They were busy moms, each with multiple children.
They worked hard and did their best.
Now they are in the final decades of their lives.
And they still have each other.
September, 2011

You Gave Them Your Account Number?

One day last week, Mom told me someone had been calling and bothering her. She didn't know who it was, but they said she had some money coming to her and they needed to deposit it directly to her checking account. They needed her account number. She told me this non-challantly as she continued to focus on her Bejeweled Blitz computer game.

"Mom, tell me you didn't give them your account number!" I will admit my volume and tone wasn't necessarily sweet.

"I didn't know what to do."

"Did you give them your account number?" I persisted.

"Yes."

"Your checking account number?" I felt my voice getting louder and could feel the blood rushing to my face.

"Yes Donna. What was I supposed to do? They said they needed it so they could give me the money." Her voice was now whiny and defensive. she still didn't take her eyes off her computer screen.

"Mom, please show me where you got the account number that you gave them."

She pulled herself away from the computer, walked into the living room and took her checkbook out of her purse. She opened the checkbook to an unused check and pointed to her checking account number on the bottom. "This is what I gave them."

I couldn't believe my eyes. I'm sure I screamed at her that I have told her and told her to never, ever give out that kind of information. She insisted she told them they needed to call me, but they called back several times and she didn't know what to do, so she finally gave it to them. I asked her if they wanted her password. "Yes, they asked me for my password and I told them I didn't have a password. They didn't believe me, but I told them over and over I didn't have one and they could call my daughter if they didn't believe me."

I breathed a little lighter, checked the caller ID and saw only one suspicious phone call. I wrote the number down, went back to my house and immediately called the bank's 800 number. I talked with a helpful young man who Googled the phone number and discovered it was listed in blogs where people had posted warnings about it even in the past 24-hour period that it was someone who lived in Brooklyn, NY scamming elderly people. He reassured me they wouldn't be able to do much without a password and if money was stolen, FDIC insurance would allow Mom to recoup her losses.

In the days since, I've kept a close eye on the account and it seems safe enough. It begs the question how such criminals know phone numbers of elderly people. Have they hacked into AARP's databases or work for AARP or some other organization that would give access to birth dates and phone numbers? It's a scary world and very confusing for someone like Mom.

The Perils of Haste

Running late for an 8:30 meeting this morning, I scrambled upstairs to get Mom's morning pills laid out for her. She came out of her bathroom just as I reached the top of her stairs. I could tell she had just showered and it became immediately obvious she didn't have her hearing aid in when I tried to express I was in a hurry as she continued to want to talk at me. I grabbed her pill case, dumped the pills into the recycled plastic pudding-container-turned-pill-dispenser.
"I'm running late. Be home around lunchtime," I yelled into her right ear as I closed the gate behind me and made a bee-line to my idling car.
She mumbled something about how she could have gotten her pills herself. However, too many times we have done that and she takes her evening pills in the morning. Better that I get out her pills.
So tonight, I went over to give her her evening pills and lo and behold, I had given them to her this morning! Arrrrgh! When I confessed what I had done, she laughed, "Hey, guess I'm not the only one who gets confused."

This Brain of Mine

When I brought Mom's mail up to her after my walk this afternoon she told me that right after I had told her I was leaving for my walk, she heard people singing outside. She opened her skylight window so she could see down into the driveway thinking I was there with some people. Of course, no one was there. She said she sat down in her rocking chair and decided to sing along with them since she knew the song. We both laughed.

"I guess this brain of mine isn't much good any more, is it!"

"It's definitely the Alzheimer's, Mom. Remember Dr. Vadalia said some people hear voices, but as long as its not scaring you or freaking you out, he'd rather not give you medication. I know it must be so hard for you."

Before I left, she asked me how I enjoyed the show last night. I knew she was referring to the Monster Truck Show at the Verizon Wireless Arena. She and I had had a couple of conversations about how John was going with Brian, Logan, Caroline, and Ava; how I would be gone all day because I planned to stick around in case Logan didn't want to stay like last year. John reminded her of the plan when he left the house as well. When she asked how I enjoyed the show, I stopped myself from saying, "I told you I didn't go." Instead, I simply told her again that I hadn't gone; that I had stayed in Manchester in case Logan freaked out and needed to leave.

"Oh, I thought you went with them," said Mom. It was as if it was the first time she had heard about it.

Phantom Visits

One of the side effects of the Alzheimer's medication, Aricept, is vivid dreams. When Mom first went on the Aricept almost a year ago, we had to switch her from an evening dose to a morning dose because of that side effect. However, she still tells me about some very realistic dreams.

When I went up this morning at 8:30 to get out her morning pills, she asked me if John had been up to her place earlier. Considering he was still sound asleep in our bed, I assured her he hadn't been up there. She said she woke up at six-something, she wasn't exactly sure of the time, but there was a six on her clock. She decided to stay in bed a few more minutes and woke up again sometime after 7:00. She heard John come up; even said "good mornin'." When she climbed out of bed, her bathroom door was closed and she thought John was in there. She waited and waited for him to come out. She had to pee so badly, she finally knocked on the door to discover no one was in her bathroom.

I once again reassured her that John does not go up to her apartment early in the morning.

"Well, I thought if he was in the garage and had to pee or something, he might come up here instead of going over to your house."

"No Mom. He wouldn't do that." And I was honestly at a loss for words beyond that.

Before I left, she recalled she had shut her bathroom door last night because of the stream of moonlight illuminating her bathroom and keeping her awake.

What's That Beeping?

At 7:30, I decided to go up to Mom's apartment and set out her evening pills. I could tell I had awakened her from deep sleep in her recliner when she gave me a startled look and said, "So did you give her a ride home?" I wasn't sure what she was talking about. "Oh, is she still here?" She glanced around the room and looked to see if someone was sitting at her kitchen table. I waited to let her get fully awake. She looked back at me waiting for my answer. But I continued my silence. "For goodness' sake. Of course she went home." Our neighbor, Sandy, visits Mom many weekday afternoons and today she had spent three hours and painted a picture with Mom. We agreed Sandy had walked home a few hours ago and Mom realized she had been sleeping when I came in.

"So, did you eat your supper? What did you have?" I asked. She always eats at 5:00 whether she is hungry or not, but I didn't see any evidence that she had eaten.

"Uh huh." Ignoring my question, she said, "Did you see my painting? It's over there." She pointed to where it was propped up against the end table near her bed. I moved closer to see it and heard something beeping. I stopped and looked around, but it stopped. I thought it must have been coming from an ad on the television. We discussed her picture for a few moments and I proceeded to close her curtains against the cold dark outside and get her pills. She returned to her recliner. Then I heard the beeping again. I looked at the microwave and realized it was making the noise. I found her dinner still sitting there and cooled to room temperature.

I pulled the container full of beans and hot dogs, held it up for her to see, and said, "Looks like you forgot to eat your supper, Mom."

"Well, guess I did. I put it in the microwave and sat down to wait for it. Guess I fell asleep!"

I reheated it. As she ate it, she said, "I would have gone to bed thinking I'd had my supper!"

I was reminded that someone told me recently that sometimes people with Alzheimer's forget to eat or forgot they ate and eat again!