New Recipe

A few weeks ago I found a new adult version recipe for macaroni and cheese that I wanted to try. I knew I would have extended time with Chrissie over the Memorial Day holiday and thought she and I might cook together. I looked forward to the complicated recipe knowing that mother usually enjoys “helping out.” Chrissie had the task of stirring the roux – around 15 minutes. When I added dry mustard, cayenne, and garlic to the roux mixture she calmly asked that I reread the recipe. While stirring she stated several times “everyone likes the macaroni and cheese you always fix.” Later when blending three cheeses with the roux mixture she commented “I don’t know why you want to make it different.” When mixing the topping she continued with “you don’t change something that’s already good.” During dinner she kept looking at my husband and when he commented that the macaroni sure was different, Chrissie immediately and boldly said “I told her but she didn’t listen to me…she never listened when she was growing up either!”

Another note:

While reading on The New Old Age site I came across a blog written by Paula Span that included comments from Dr. Ronald C. Petersen, a neurologist at the Mayo Clinic who chairs the medical and scientific advisory board of the Alzheimer’s Association. He stated, “As their families know, Alzheimer’s sufferers may experience days of comparative lucidity alternating with days of bewilderment. Cognitive ability may even vary throughout the day; a person might be relatively sharp in the morning and by evening be quite confused.” I have never read or heard this stated so clearly before and am trying to research Dr. Petersen’s entire article. I know Chrissie has good and bad days and she does have the uncanny ability to “pull it together” whenever company comes.

Favorite Things

I thought this might be fun for Ms. Chrissy; the questions are from a favorite site, http://www.marybethwhalen.blogspot.com/ . Interestingly, she answered most immediately and more that a few really surprised me!

20 Of My Favorite Things

1. Color- light blue
2. Dessert- cheesecake
3. Smell- lilac
4. Flower- red geraniums
5. Animal- Sam and Sasha (miniature schnauzers - mine and Wilma's)
6. Month- I like all of them
7. Beverage- Ale-8's (soft drink produced in Winchester, KY.)
8. Pair of shoes- tennis shoes
9. Snack- cheetos
10. Song- many pretty songs
11. Book- my Bible
12. Fruit- peaches
13. Hairstyle- the same one
14. Piece of clothing- jeans and pink blouse
15. Store to clothes shop- Belks
16. Season- spring
17. Hobby- use to be working in flowers
18. Thing to collect- never collected anything
19. Movie- Driving Miss Daisy
20. Restaurant- Kelsey’s

Alzheimer's series - HBO - May10

The Alzheimer's Project begins Sunday, May 10th on HBO.

Sunday 5/10 9 p.m. The Memory Loss Tapes
Monday 5/11 7:30.Grandpa do you know who I am?
Monday 5/11 8:00 & Tuesday 5/12 8:00 (2 parts) Momentum in Science
Tuesday 5/12 7:00 Caregivers

This series is also produced on DVD so if you don't subscribe to HBO you can contact your local library and request they order the DVD series.

Absent Look

The "absent" look now seems to be with Ms. Chrissy more frequent and for longer periods. A couple weekends ago it lasted from Friday evening through Sunday, the longest ever. During the episode she is very quiet and slow to respond. This latest spell left her struggling for words more so than usual.

On a different note, my little mother loves to help out. I hosted bookclub the other evening and Chrissy rinsed and sliced strawberries, which was most helpful. Spring has also ushered in her desire to redecorate. Chrissy has changed living room rugs and had furniture moved from downstairs to upstairs. This evening she's talking about freezing strawberries! Another day.

New Plans

Previous post, From Parent to Friend - hhmm, maybe in my dreams; just to let you know that hasn't happened so far.

My latest venture was asking Chrissy who she would like to visit with or do some act of kindness for. Almost immediately she named a person. requesting her friend come visit and they have cheesecake and coffee. That day was a bit stressful though Ms. Chrissy really did manage the conversation and visit well. Of all things, she pulled out a white linen table cloth to use on the kitchen table! Several times I went out of the room and she called me back in. I'm sticking with that idea and do plan to arrange such again, maybe monthly.

Chrissy has a red patent leather bag she uses to pack overnight items in when she spends the night with me. Thursday evening when I returned from work I noticed the red bag packed sitting by the door! Yes, she was spending the night, nothing wrong she says, just spending the night with us. My sweet husband is so kind to watch Driving Miss Daisy, one of her favorite movies. Plans were Friday morning a trip to Target, lunch at IHOP, a couple hours for her to rest, and that afternoon - a visit with her friend.

Lesson learned: too much activity in one day for Chrissy and for me, way too many consecutive hours.

On Saturday I was out of town for five hours or so (husband nearby and sister-in-law stopped in) - when I returned Ms. Chrissy had a list of "things" she needed done! One of which was filling up the bird feeder. Even though I repeatedly said filling the bird feeder is a task for someone else, she continued to focus on me doing so. Now, that metal contraption, designed to keep out squirrels is heavy, rough on my hands, must line up perfectly - essentially, I just don't like fooling with it. Note my frustration with "repeatedly and continued to" - that's right Judy, behavior consistent with Alzheimer's! Why I didn't just fill the #%$@ bird feeder the first time - I'll never know.

Lesson learned: composed a weekly to-do list for Chrissy's companion that includes filling up the bird feeder! I later spoke with Home Helpers to make sure there was not an added charge for light housekeeping tasks - there's not! Then I called our sweet lady to get her input and she was most receptive to helping out.

Geez.

Friendship

My mother's friendship is one of the relationships I have missed most since Alzheimer's intrusion. So many "bridges" have blown up in her little brain so I never know when or if she will make sense. Actually, much of the time she does well following short conversations; other times, I get a "who - what- when - I don't know what you're talking about?" That loss, our friendship as it once was continues to sadden me. For me, an overwhelming sense of responsibility in being a caregiver left little emotional space for our friendship; there's always something to do or something needed to make sure things are right and safe. Right or wrong, that's just the way it's mostly been. It has taken a couple years for me to truly internalized the fact that caring for my mother is not my total responsibility. She has other children and we have found someone who works as a companion three hours three to four days a week.

Well, I'm ready to rethink this "caregiver and parental" mode! Personally, those words alone have negative connotations - demanding, rushed, sacrifice, limited free time, and such. I do realize this is a bit negative and selfish, so those of you who email please be kind or just skip the comment on this one!

Yes, I'm thinking a different mindset - one of honor and support, one who is at her side as she ages and assisting her as she journeys this last stage of life, one who is calm. And, one that okay with donuts for breakfast, cake for lunch, and ice cream for dinner. I kid you not, Chrissy loves loves loves sweets. She is eight-three with moderate cognitive impairment, why not have chocolate three meals a day? Okay maybe the chocolate is an exaggeration, often it is lemon or cream cheese filling. And baths wear her out, so it's not going to be that important she have one so frequently. Yes, I'm already thinking of B12 deficiency, UTI's and increased cognitive impairment. So we will see how it goes.

A recent post by Dale Russakoff, http://newoldage.blogs.nytimes.com/author/dale-russakoff/, talks about receiving the advice of "just don't hurry" and how those words helped him identify with his mother's pace and view of life. I would really like to get there. So, in one effort to pursue a new frame of thought I began researching and found The Best Friends Approach to Alzheimer's Care http://www.bestfriendsapproach.com/. Interestingly, I already possessed some of their perspectives and exercise many listed suggestions. Who knew!

Circle of Life

Photo by http://www.ladybirdphoto.com/

This morning I walked into the living room and Chrissy was on the sofa reading her Bible. Growing up, more times than not, I recall her sitting on the end of the sofa with the end table lamp on, holding her Bible up close and reading. What a beautiful memory! I have been thinking lately about end of life struggles and the stage of life she is in due to this insidious disease, Alzheimers. It seems I often find myself parenting her, things like remembering to be nurturing with touch and voice tone, wondering if something is safe or not, making sure there is daily food prepared, and taking her out weekly for a ride and such. Now, let me be clear, there are times I drop the ball or fail miserably; however, it's my heart's desire to help care for her lovingly and without resentment.

I listen to my mother's childhood stories and she talks about her mother being too sick to care for the younger children. Responsibility landed on my mother at around eight or nine years old. Her education ended with the third grade in order to help take care of the family. My Aunt Maxine remembers mother cooking for the family when she was nine years old. She thinks of my mother as her mother. My aunt recalls a barn on the property with a tire swing; at nap time my mother would take her sister out to the barn and swing her to sleep and then carry her inside to bed. At eight or nine they recall mother washing the family laundry in a tub using a washboard. I never hear Chrissy complain about her childhood - and she tells some of the funniest stories. As I think of my mother's difficult childhood, I wonder who nurtured and encouraged her? At times she is much like a child these days. As exhausting and frustrating as caregiving can be, it truly is an honor to now parent my mother.

Sense of Humor

A few weeks back Becky came in for the weekend and brought Chrissy a chocolate apple wrapped in red foil. One evening while watching Andy she decided she would eat her apple. About halfway through it (truly) she stated, " I think I will tell Becky there was a worm in this apple!" She just laughed at the thought of pulling that joke on Becky! Last night, of all things for her to remember, she decided to call Becky and tell her about the worm being in her apple. I love hearing Chrissy laugh and so thankful that she continues to have her sense of humor.

Yesterday we ventured to the Kitchen Store in Asheville only to learn it had relocated. I got turned around several times before heading in the right direction. Chrissy kept telling me to find a phone booth and call someone! I really don't understand how I can navigate Greenville fine but get so turned around in Asheville. We decided to shop at Marshalls in Arden and then eat at Cracker Barrel. When her beef stew arrived it was served in a bread bowl which she found so interesting - the inside bread was scooped out and came with a bread lid! After she ate it all she promptly put the bread lid on top of her bowl and smiled. I love, love, love these moments.

Stressful Week

Chrissy has seemed more hyperfocused in the last week or so; meaning, the conversation goes on and on and over and over. I think it began with the snow. Last Tuesday evening I opened her front door to show her the covered yard – with child-like excitement she made two or three calls talking about the snow. While most of the snow had melted the following day; it was still frigid out.
She couldn’t understand that I would be going in to work – with the snow and all, surely no one would come to the office. I probably had five phone calls from her that day.

Next came John’s boat leaving the garage – her continued thoughts and speech focused on those insurance people, what business it was of theirs and how they knew the boat was in her garage.

One morning she had on a dirty blouse and had not brushed her hair, for her this is a bit unusual. I brushed her hair and got her to change blouses. She informed me this was her house! She wasn’t mad, she often has difficulty finding words consistent with the situation.

The week before she received a check for $82.00 and wanted it “out of the house” meaning in the bank. The following day I was unable to stop at the bank and nothing would suit her until I brought her check back inside (it was in the car). She knew that Amy would deposit it when she came over on Wednesday. Amy was unable to come on Wednesday so mother gave me another chance to put it in her account. I’m most usually really busy at work so I didn’t get to the bank that day either. In the evening she needed it out of the car and brought it inside. This weird dance went on for about four days, each morning she would give me her check and then insist she keep it at night. I finally made it to her bank, phoned to let her know and she replied “praise the Lord!”

Yesterday morning as I was about to unlock the storm door Chrissy opened it and immediately began with “see that crack” – the bottom of the door allows for a very small strip of light to come through. That conversation continued until I left for work. I thought it would end however I talked with Ed thirty minutes or so later and he was over there - Chrissy had called him to come look at her door. That evening coming home I called Ed and learned he was at mothers’; again she had called him to come over to check out the door!

Names by wordle.net

Saturdays' Venture

Get out of my way!

Straight to the cookware -

Maybe something for Brie...

How much is this?

Cheers!

Last Saturday we ventured to the new super Wal-Mart in Arden and then to lunch at Carrabbas. It was a good day being out an about.

Internal Architecture

Frustrated with my efforts in trying to get Chrissy to stay with one of you while we are away, an interesting article by David Solie came across my way that seemed to make sense. It talked about our reasons in moving a parent from their home - such as being helpful, safety reasons, convenience and such. Solie refers to “internal architecture” and that emotionally, our parent has “secret scaffolding” that supports her and it’s all tied to being home. Our mother’s house is her world – exactly how she wants it, familiar and a strong element of safety and control; to be in a new space creates psychological discomfort. Yes, even for only a few days. Solie believes that when we ask an older person to leave their home it’s like asking them to give up the equivalent of water or oxygen. Staying in her home is the last area of control – important, as she seems to be in a place where her ability to control is limited and precarious. Her health is fragile, her husband is gone, most of her brothers and sisters have passed, friends and neighbors that she was once close with are gone – her home is an anchor of sorts.

New Chicken Recipe

A couple of days ago I had thawed out a package of organic chicken breasts and had not gotten around to preparing them so I took them to mother's asking her to cook them as Barbara would be there in the afternoon. That evening when I came home Ed was there with her and mother wanted to send him a chicken breast home. Well, those chicken breasts were flat as a flitter and hard as a brick! She had pounded the chicken breasts flat, not thin, and fried to a crisp! Ed's expression was priceless.

Christmas Presents

According to mother, John talked with her about not spending a lot of money this Christmas; specifically, about buying a lot of presents. So, she decided she would just give out a few (7) checks - that's what she would do and kept repeating her plan the rest of the evening. The following day Sheila brought her a Christmas present and mother was going on and on that she had not planned to give Sheila a gift - just money, and now didn't know what to do. She then decided she'd open the present and see if she liked it - if she liked it she would then give a gift in return. Watching her try to gently open that present was a hoot - holding it way up close and carefully trying to slide her finger under the tape! While, she managed two sides, the paper was beginning to tear so I opened the back and showed her the present. She stated, "oh that's so pretty - now I'll get her something." The package was rewrapped though not as neatly as before.

Morning News

The other morning I walked inside to find mother sitting on the sofa watching the news rather than the Waltons, so I then realized I'd forgotten to change TV stations to the morning channel when I'd left the night before. I asked her what was going on and she replied, "all they talk about is Barak O'bummer!"