The Spicery for Lunch with Mom

We try to go out to lunch at least once a week. Mom has always been a very active woman, Bingo, shopping and church, bowling and women's groups. So now sitting at home all the time in difficult for her to manage. So we try to go out at least once a week to lunch and shopping.

The Spicery is a little restaurant in the historic district of Catlin Court in Glendale, AZ. I once owned an antique/gift shop in the area and always enjoyed the food at the Spicery. Martha Campbell the owner has incredible recipes and bakes the bread fresh everyday. She had retired for several years but is now back at work baking everyday and the food is as good as ever! Just ask her for her bread recipe. She is happy to share.

The restaurant is in a historic 1880's Victorian home with red brick walks and beautiful landscaping in keeping with the era. Lots of flowers and vines with huge trees give an enchanted garden feel. Inside the tables are draped with lace tablecloths and real china. Each room is decorated with art and china projecting the era of fine tea each afternoon. In fact you can schedule a high tea for any afternoon. Little girls also have pissey birthday parties in fancy dresses with their dolls.

Mom always has a hard time deciding on what to order. I know what she likes and generally make a suggestion saying, "Mom I know you would love the Chicken Salad Sandwich and home made vegetable beef soup. Shall we order that for you?"  And she did love it! She ate more than half which is a lot for her. And she ate all of the soup saying, "This is just like my Mother used to make!"  She even enjoyed a half a piece of Pineapple cake!

After we walked to the nearest shop to look around a bit. She fond a nice t-shirt with bling that suited her and was a great price.  We vowed to return soon!

The afternoon was delightful. The sad part is she didn't remember by the time we got home.

Melt Down Cancels Book Club

I so much wanted to be there for our Seasoned Readers Book Club at Barnes & Noble last night.

We were reviewing MAINE by J Courtney Sullivan. But, Mom had an Alzheimer's melt down and I couldn't go. So to calm her I had a discussion of the book with her instead.

Our family spent summers in Maine near where this story takes place in Needick Beach, Maine, although our cabin was at Sebago Lake, not the ocean. Mom and Dad are both from the area and I still have oodles of cousins there. This story reminds me of my cousin’s home on the beach, just south of Old Orchard, surrounded by tall windswept pines. They get snow drifts in the winter up to the second story windows! But the summers are lovely. Only a five minute walk to the Atlantic Ocean!

I like the way Sullivan broke up the chapters speaking from the voice of each of the women in the family. That way we got into their heads and learned what they were thinking and feeling.  Seeing the same summer from each of their points of view examined the dynamics that come into play in every family.

The matriarch, Alice held a life altering guilt her entire adult life. Once on the road to a bohemian artist lifestyle, a tragedy, the Coconut Grove night club fire, made her reach an agreement with God to do what her sister, lost in the fire, would have done, instead of playing out her own desires. No one else would have dumped the guilt on her that she herself held. The results paint her life in shades of dysfunction, the impressions of neglect and a devotion to her church beyond the norm.

My Mom remembers that huge fire at the Coconut Grove in Boston. It was on the radio and in the papers for months. I attach a picture of her family at exactly that time. The Philco radio they listened to is in the background. Her two eldest brothers both went off to war and Larry was captured by the Germans and was a prisoner for much of the war. He came back only 90 pounds down from 250 he left with. Mom is in the white blouse in the back row. She was 11-12 years old at the time.   

Alice’s daughter Kathleen never felt loved the way she craved and felt the need to care for an alcoholic mother and then repeated the pattern with her own alcohol abuse. She even ran off with a new man after her marriage failed, effectively abandoning her daughter physically as her mother had abandoned her emotionally.

The daughter, Maggie, sought love from an emotionally unavailable man, just as both of her parents were unavailable to her. Her life apart only reconnected once she announced her pregnancy to her mother who came running to fix everything. Maggie was smart enough to lead her own life and even determined to raise her child alone.

Ann Marie is the daughter-in-law who wanted to control everyone and paint a pretty picture of life at the same time as her own world was far from the perfection she had envisioned or portrayed. She even decorated dollhouses as perfect slices of life she could not always have control of in real life.  A gay daughter off in the Peace Corp and a son who couldn’t hold a decent job and was on allowance from daddy were represented as perfect children. Ann Marie held a secret longing for a neighbor, yet played the perfect wife. It all starts to unravel when she acts on her desires.

Sullivan gives sufficient description to the home and occupants to make you feel as if they are real and appreciated. It made me long for those days of my family at the beach with sand between our toes.

I recently learned why we all feel so invigorated after a barefoot walk on the beach. The earth’s electromagnetic charge actually charges our body and makes the brain and entire body process better!  

This book made me feel like every family has similar drama surrounding life and death, alcohol and finances, personalities and control issues. In the end we all have to deal with what is there or walk away, which is one way of dealing with it. We still have our families and end up accepting them the way they are with all of their faults. It made me look at how I interact with my family and why. Sometimes you just have to do what needs to be done because you are there and a part of a family.

 

Mom was calm by the time we finished discussing the book. It was time for bed and I led her in to get her night clothes on and turn down the bed. She wanted to know how much this resort costs and can we afford it. I try to explain it is not a resort, but my home and this is where she has slept every night for the last year. "Oh no she says, This is my first time coming here. But is very nice." Then she notices my Dad in the next room watching her and shaking his head as if to say here we go again. "When is that old man leaving", she asks. "That is your husband of 60 years", I tell her. "Oh no, he can't be my husband, he's too old," she replies almost every night.  And so the nightly discussion begins again.

Then we change the subject and get on with the business of getting her into bed. Thank be to God that she sleeps well and gets up happy every morning. A little achy from arthritis. But otherwise good.   

 

Nice easy day...

Except that my car died on the way to a 7pm meeting. Well not entirely but it was chocking so much I turned around an came back home. To the mechanic in the morning.
But Mom and I got on well all day. We did the story of where home is and why she lives her now about 30 or 40 times. The picture book came out at least 5 or 6 times. But she was very accepting of the idea she needed to be here each time the story unfolded. Some days she argues and says we are lying to her. But today she was relatively calm. We worked together on several projects including breakfast, lunch, and dinner, making the bed, sorting clothes, laundry and mopping and dusting. Giving her jobs seems to calm her down. Especially peeling carrots or cucumbers or folding towels. It was a cold morning after a rainy night. Her hip was hurting and she didn't want to go anywhere so that made it easy for her accept this is home. Thank God for a peaceful day.   

Christmas Card

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Mug for Mom

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One of those days! AArrgggh!

I was looking forward to a nice easy day at home and now I wonder what was I thinking! With Mom and her Alzheimers it is never a nice easy day. It was okay going to church this morning. She handled that okay. Although I think she slept through some of it. Later, she was in an especially chatty and argumentative mood. Over and over again we went through the story of where she lives and why she is living here. Next she went through the things it was okay for me to do and what I needed to do differently; everything from new carpet to getting rid of my favorite comfy chair. She insisted on going upstairs even though it is not good for her hip and then all she did was get critical about everything. She wants it all changed even though she doesn't live up there. I was pulling my hair out all day with the constant barrage of demands and tirades. Then the story about what happens when the people who own the place come home. I own it but she doesn't seem to accept that part. She seems to have a guilt complex that she is always doing something wrong and the police will catch up to her.  Finally at 7:30pm I had enough and escaped to Walgreen’s to get milk and cat food. Home again and I turned off all the lights and went up to my room. Some days I wonder how much more of this I can take.  I will need to get out of the house more often. But that leaves Dad to deal with the  demands. I don’t think the new drugs are doing much to alleviate the situation. Maybe we talk to the doc again.

Sleep Tight

She is finally asleep after a really rough day. It started out alright with just a few awkward incidents. She made Dad's cereal and added sugar twice, taking forever to slice a banana and then went and sat down asking why I hadn't made her cereal too, after she said she didn't want any. By mid morning the temper flares were so bad I called her sister in North Dakota as a distraction she usually likes. It helped a little. We made soup and sandwiches for lunch and that went well. But I got busy and didn't hear her slip away next door. My niece came to find me to say she was at their house hysterical. I went over and she feels like no one wants her or loves her. And once again as everyday she wanted to go home to the illusive home she doesn't know where, but not the real home where she lives. It's almost like a reference to Heaven but she says no it is her real home, she just doesn't know where it is, but they are waiting for her there. She also thinks she is babysitting someone but not sure who or where. I asked her to help me with dinner. And she was good. Then she fell asleep in her chair. Dad's getting her into bed. Another day in lala land. God grant me the serenity...

A Night Away

So I schedule a dinner out and arrange for my sister to watch Mom for a few hours. I make sure Mom has had her meds and is well fed. And I take off to pick up a friend at the airport, attend a meeting and go to dinner with 7 friends.

About half way through I get a text Mom is bad tonight. I can just hear the discussion in my head. "I want to go home" "You are home" "Oh, don't give me that routine. Now take me home." Over and over with increased emotion and then the tears come.

We try distractions of all kinds. Help me fold the laundry. Or lets look at this photo album. The television is of no interest to her so hard to use that as a distraction. Often we go through her drawers sorting clothes. After awhile the emotions usually lessen and  she will sit quietly again. I try to get her into bed early if it is too bad.

But now I am across town at dinner and worried. I know my sister can handle the situation and she does. By the time I get home two hours later everything is peaceful again as if nothing ever happened. And in Mom's mind nothing did, because with Alzheimer's she has no memory of anything today.

Cat

She's doing it again this morning. She's at the back door trying to get the cat to go out and keep the stray in the yard out. Everyday she's at it with the same result. My cat, Baby, a little black cat, doesn't like going outside. He is totally an inside cat. But he likes to talk or meow at the stray cats outside the window. So she thinks he wants to go out and play. I guess its something to keep her busy. She has been down there for five minutes opening and closing the door, calling Baby to go out as he hides under the dining room table. The stray keeps trying to come in and she pushed him out with her cane.  You would think she would tire of the process but the Alzheimer's makes everything new like the first time. It's just the rest of us who get tired of hearing it going on and on...

Inappropriate Comments

For a woman who has always been totally appropriate to the extreme, it is hard to see her lose the ability to censure what she says in public. We were sitting in the doctor's office waiting room when a very large woman was walking slowly down the hall using a walker. She had a loose fitting dress and was bent over as she held the walker inching her way toward the exit. With each step her massive breasts would swing back and forth in rhythm with her steps. Mom starred at her for a minute and then commented loud enough for the entire waiting room of about 40 people to hear, "Those are the biggest boobs I've ever seen!"

Another time in the waiting room, we spend a lot of time in doctor's offices, a woman sat down across from us with a splint on her nose making it look very long. Mom's comment right away was, "Oh look it's Pinocchio and she must had told a lie because her nose grew!"  You can't help from wanting to laugh, and you could hear a few snickers here and there.

The saddest part is when she forgets who her husband is and wonders why she has to share a bed with him. Sometimes she thinks he is her father or an uncle. Other times she insists that they were divorced long ago. I leave the banner up that I created for their 60th Anniversary in June that has a picture of the two of them so she can recall they are still a couple. Once in awhile she will say how nice it is that he has come to visit, but when will he be going home? I often remind her she used to comment she didn't believe in divorce, just death, so they were together for life. And for better or for worse. Thank goodness Dad took that same vow seriously because he is really experiencing the worse everyday. The stress on him is terrible. He tries to explain things to her and since his stroke it is hard enough to say just the basic necessities each day. So when he tries to tell her she is home and there is no where else to go, he gets frustrated. She ends up crying and he is angry and just wants peace and quiet.

That's another thing. She used to sit at home alone all day while the kids were in school and Dad was at work. Sure she had lots to keep her busy and she was always very social going bowling and to bingo or to church charity functions. But she knew how to sit alone and be at peace. Now she can not be alone for a minute. She has to have someone to talk to constantly. If Dad is asleep in his chair she comes seeking me out for someone to talk to all the time. You try to watch TV with her and she is commenting on everything going on and even the room's decor. Talk, talk, talk. She never slows down! She was never like that before the Alzheimer's.

And some of the stories she comes up with are incredible. I'm certain they come from watching TV and not being able to separate the fiction from her life. One day she says she was in jail, another time, she was carrying my baby because I couldn't get pregnant so she was my surrogate. When in the hospital she wanted everyone to be quiet so the people out in the hall didn't notice us because we were not supposed to be there, we were squatters in the hospital or the resort as she called it.

Lately she leaves a room and then comes back wondering where the woman went who was just in the room. She is that woman but she insists there was another woman there who is now gone. On occasion she makes me believe she is seeing ghosts. She talks about her sister being in the room with her, but no sisters are in town right now. She often confuses me as her sister because she believes she is way too young to have a daughter my age. In her mind she is in her thirties or forties. Another reason she is confused about Dad.

I try to explain to medical personnel that it is important for me to help her answer questions. One day she was going for an MRI and they asked have you had any surgeries and she said, "No I've always been healthy!" I said, "Except for the mastectomy, aortic valve replacement, double bypass, abdominal aortic aneurysm stent, and two hip replacements." 

Or they ask are you on any medications and she says, "Oh no I never take any medications." And I have to bring out the list of the thyroid pill, the heart meds, the blood pressure meds, the anti-depressent, the anti-psychotic, the water pill, the potassium, vitamin D, B1, and more. 

One day a salesman came to the door and she started giving him some story about how they were just visiting from Canada. Where that one came from I can't figure. 

So it's important that everything she says be taken with the knowledge it may all be fiction!

 

Meals

Mom has never been a picky eater but now all she seems to do is push food around her plate to make it look eaten but she hardly takes a few bites. The one exception is on her 81st birthday when she had a Maine lobster and boy can she devour that thing without leaving a shred of meat! She grew up on lobster living in Maine on the coast. She often talks about having lobster and how much she misses it living here in the desert.
A few tricks I have found that seem to help get her to eat more are; use a small plate, cut into small pieces, and provide a variety of items.
When she came home from the hospital last April she had lost 40 pounds. She went in at 169 and dropped to 129. She is staying the same now but it is a challenge to encourage her to eat.

Medications

Alzheimer's creeps up on you slowly. It was several years ago when my sister Jo first suggested the doctor be brought into the discussion about Mom's memory. We knew there was a family history of dementia going way back. Mom's aunt Mickey, her father's sister, had advanced dementia. More recently her cousin Charlotte was afflicted.

When I took Mom to see the doctor about her memory Mom was in denial. But a battery of tests turned up an abdominal aortic aneurysm that would require surgery. The pre-surgery evaluation turned up a bad valve and need for several bypasses. Amazingly she made it through those surgeries with flying colors! It wasn't easy. I had practically moved in with them in 2005 after Dad's stroke and now here I was back again, 2008 for several months. 

The first medication they tried was Aricept. It seemed to help a little at first but then she began suffering from chronic nausea. There was another one I can't recall we tried but it made her ill as well. We tried a few herbal remedies and teas. Nothing really helped. The Excelon patch we started near her birthday in September 2010. We had a nice party for her and she insists she wasn't there. Is was about that time her memory took a major turn for the worst. She even became violent striking Dad with her metal cane. Then at the end of September Dad was in the hospital. He was convinced he was a gonner but some antibiotics had him better within a week or two. The scare convinced him it was time to sell the house and move in with me. Mom could not be left alone and he didn't want her in a care center. 

So we listed the house in October, showed it a few times and it sold right away. Dee Belcher is a great realtor! They had to be out by December and it was a rush to get my house ready for them. Thankfully my friend Larry Chebowski was there to do the construction - enclosing the third bay of the garage into a sitting room and laying oak flooring throughout. By December 22nd they were moved in!  

Shortly thereafter we went to see a psychologist specializing in Alzheimer's. He tested her and rated her in stage 5 or 6 out of 7 stages. He prescribed Razadyne along with a mood enhancer -Paxil at first then Celexia. The Razadyne really made her sick. One pill and she was in bed sick for three days. Now she is on Celexia and Halodol an anti-psychotic Still there are days when the anxiety and frustration push her into hysterics. I wish there was a formula for calming her down.   

In March of 2011 Mom had a fall fracturing her left femur from the hip to the knee length wise.The TV commercials say if you took Boniva this was known to happen and call the law offices for the class action suit. Dad says forget it. Even though Mom was on the osteoporosis drug and it may have caused the fracture. She did however already have a hip replacement in that leg that may have contributed.    

This is also where the congestive heart failure really began to kick in. Not more than two weeks after coming home from the hospital she was back in with breathing problems. They took over 20 pounds of fluid out of her in about a week. Now we watch the fluids closely. 

       

Going Home

Everyday a little after four in the afternoon the Alzheimer's symptom known as "Sundowner" hits. All of a sudden Mom has the urge to go home. But she is home. This happened even before she moved into my home last December. Here it is October and she still isn't used to this being her home. 
Distraction is about all that helps. Some days I let her walk next door to my sister's home. This makes her feel she has her freedom to do as she wishes and it makes her happy. My sister or one of my nieces or nephew usually walk her home half an hour later. Their home is busy with lots of activity, large dogs, kids, loud video games and such. So she can only take it for a short time before she is ready for the tranquility of where she had come from earlier in the day. Not that it feels like home. I take her through each room pointing out her furniture, which we took into my home, requiring me to get rid of my furniture which I loved. She recognizes her paintings and photos. Then we look at her bedroom and all of her clothes in the closet. Finally we join her husband, my dad in the TV room. Sometimes she doesn't recognize him and I need to point out the couples photos of the two of them over the years. The best thing I ever did was make a bound photo book on www.shutterfly.com that has all of our family pics in chronological order with the year under each, their couple portraits over the years, our houses with street address and years in order and recent celebrations like their 60th Wedding Anniversary Party photos.  It lays out the family history, their history and recent events clearly. Her favorite pic is the birthday lobster dinner last September for her 81st birthday.
Once we go through the entire history the water works usually stop and we can get on with dinner. Some days it takes looking at old photo albums and old familiar music to calm her down. Occasionally I have had to put her to bed early because of the hysterics. She actually makes herself sick.  

Protecting the Purse

The Purse - Mom has this black crochet purse that she has been carrying for at least the last ten years. She has become obsessed with hiding her purse so no one steals her money -of which there is little kept in her purse. So several times a day she moves her purse from the night stand drawer to the dresser drawer to beside her chair to the closet to another dresser drawer to the china hutch to another chair. And several times a day she can't remember where she last put, it so we all play the game of find the purse before she breaks out in hysterics.
Next we play the game of looking at the reading glasses and sun glasses and switching cases.
Somehow she has managed to accumulate a ton of cosmetics in her purse and sometimes a pair of panties and socks. I think that is for the quick escape plan!
Alzheimer's is so strange in the way it plays with the mind one day and then does something different on another day.  If she has something to look forward to like going to Bingo or church, she seems much more under control.

Shower

I was on the phone with a client making her airline reservations when I heard the water turn on in the shower downstairs. "Gotta go" and dropped the phone and I ran down the stairs knowing I had to get there before she tried to get into the shower.
The problem is with her Alzheimers, she doesn't remember that she had hip surgery not too long ago and she can not lift her left leg into the tub to take a shower. I wish we had a walk in handicap shower like they had in their Sun City home, but we don't. I have been tempted to add another "shower room" in the garage by the hot water heater, but that hasn't been practical yet. 
Anyway she had already managed to climb into the tub holding on to the handicap railing and the shower chair. Sometimes she amazes me with what she can do. I know that had to hurt like the dickens.
"You should have told me you were going to take a shower," I said to her as I pull a towel off the bar to soak the water flooding the floor."I'm not a baby! I can do it myself!" she says. Then she is confused which is the shampoo and which is the conditioner. She dumps a handful of conditioner on the tub floor and I quickly take the shower hand held spray to wash it out before she slips on it. I wish we had a better shower hand held unit that would stretch lower and hold itself in place. Maybe a scissor like unit that you can push in or pull out. I will have to look for that.
So I get her the shampoo and we manage to get her scrubbed up, rinsed and carefully out of the tub. It is harder getting out than in.
Then in the mirror she surprises herself. "Is that me!" She is an old lady and recalls being much younger. "Look at this skin just hanging on me!" She has lost over 50 pounds in about 6 months after her surgery and congestive heart failure. It is a shock every time she looks in a mirror.


 

Alzheimers Day

  As a Caregiver I deal with Alzheimer everyday.
There are 7 stages of Alzheimer disease and my Mom is at stage 5 to 6. That is the point where she can't recognize us and can't recall what you said to her one minute ago. She needs constant attention. Every afternoon at about 4pm she experiences what they call "sundowners syndrome" where she tries to leave. She wants to go home, but doesn't know where home is. She and Dad moved in with me last December. Now I wish we had made the move earlier as she would have been likely to adjust better before the disease progressed so far. Although when I think back she was doing the I want to go home bit when living in their Sun City home which they had been in for over ten years. So the "I want to go home" situation would probably have happened anywhere she was living, not just here.
Caregivers know it is a full time job between waking, dressing, meals, meds, therapy, managing stress, and coping with the anxiety. The patient knows they are losing their memory and grieve daily. It's harder than caring for an infant because they can walk and get into things and have such strong emotions. And in my case it's also hard because it's my mother.
Some of the tools that have been most useful include:
1. My sister is close by and comes to help ease the stress. All of the family has been wonderful at spending time with Mom. The most valuable thing they do is sit and talk to her. Talking about the family and the past are most soothing.
2. A picture book of family and homes in chronological order. It provides reminders of where we have lived and who is who in the family. We especially like watching the children as they grew each year in the family pictures. Most important are the pictures of my Dad as he matured. She has a hard time accepting the old man she sees everyday is her husband.
3. Family birthday and anniversary celebrations. Marking occasions with a gathering (not too big) and pictures. Never before have photo albums been viewed so often.

I wish Mom had a hobby she would enjoy but nothing seems to interest her. Folding laundry is her favorite pass time. Sometimes I get her to peel potatoes or carrots but her hands are so weak and arthritic it is hard for her to do that anymore.

There are several websites and blogs that offer advice that has been helpful. And Mom's doctor has been very supportive. If you have any good ideas let me know! email lasharpe@cox.net

Doctor Visit

September 19, 2011

Mom and Dad both went to see their Primary Care Physician and had blood work drawn. Everything is fine and we are staying the course with meds. As I look back in my date book I am depressed at how many events I wanted to attend in the last year and were crossed off at the last minute due to caregiver duties. One or the other weren’t feeling well enough for me to leave them with a sitter. My income has suffered dramatically. I haven’t made hardly anything this year. I need to get out and meet new prospects and make demos to make sales. It’s a good thing Dad is picking up the household expenses and food. My concern is once he is gone how will we survive?

Convention in LA

August 12, 2011

I got away for almost a week with Gina covering for me with Mom and Dad. At first I was obsessed with calling and checking in – but what could I do from California. And Gina is more than capable of handling anything that would come up. So I finally relaxed and had a good time at my Kangen water convention learning all about how alkaline ionized water is healthy.