Oregon 2005 - Aug to Oct w/Diane's visit

From: Sue Cotner
Sent: Tuesday, August 09, 2005 9:18 PM
greeting siblings..... an update on the folks...... Dad had multiply skin lesions removed last week...... 6 burnt and 3 actually cut out ..... none sutured...... he is self absorbed in the healing process and struggles to maintain........ he is most grateful to all for ongoing help...... we have been there for hours daily since return..... eye doc appointment was Monday...... his vision remains blurry in operative eye and narrowing ...however his iop(intraocular pressure) was great....15....started at 58 prior to trebeckulectomy ..the doc was more than please with the surgery and compliment both himself and Dad for a job well done... he has released Dad to do his exercise... but he is not willing to do much as he is afraid that lesions will start bleeding. .so hopefully in the next few days he'll get into some wee bit of exercise.....left eye, which he stopped his medication went from 22 when boots was here to 28 at appointment.... so was a bit chastise and told to return to drops which he agreed too.... no plans for surgery on that eye for at least 2 months....... he is eating well …into halibut this week...he.. talked to Mom today and she did fine.....seems to be accepting the fact that her and Dad will not be living together again...spent day with Mom today and she informed me that I was much easier to raise than Margaret....however about two minutes prior she thought she was Margaret and asked me how I was related... I reply... I'm Margaret sister' and she was contented.... quite chatty today indeed....... so thoughts for Dad.... perhaps call him after 3ish or 4ish...he seems to want to talk and I’m all talked out for tonight......q
Tuesday, August 09, 2005 10:30 PM
Wanted to add, mostly for Mary benefit.... my most recent readings..... Bryson, walking the Appalachian trail..... a satirical humorous story of a couple of aging buds attempting to hike a bit...... another one is John Perkins... confessions of an economic hit man...starts off "economic hit men are highly paid professionals who cheat countries around the globe
out of trillions of dollars..... they funnel money from the world bank, the US agency for international development.... and other foreign aid organizations into the coffers of huge corporations and the pockets of a few wealthy families who control the planet's resources..... Colleen might be interested..... and an interesting one by make Hansen(author of chicken soup for the soul) and Robert Allen called cracking the millionaire ....one line in the first few pages..... 'profits are secondary, giving come first'...... and the rest gets better..... Brian, my business minded son, has me pursuing some economic issues I wouldn’t have thought in the past...... my financial wisdom is slowly improving....although according to my checkbook keeping.... Kathy would disagree perhaps......
love and hugs to all........q

From: Diane
Date: Sun, 28 Aug 2005 12:26:48 -0700
I'm heading out to my party to celebrate 16 program years, my retirement and probably/maybe/only-God-knows moving party with some dear friends. Tomorrow is work's retirement party -- 70 people responded yes -- so it's moved from our multi-purpose room to a restaurant that's normally closed -- opening for our private party. I used to wonder how many people would come to my funeral. This is much better! God is good.
Bill is doing quite well. He came home with a walker -- neurological damage continues to improve. His attitude is good too. Time will tell how long it lasts. He thinks forever at the moment. Progress, not perfection. Looks like I will continue my original plans -- go see the kids for about a week, come home for a few days and head up to Oregon on Sept 14 for a month (Mary leaves Sept 15). The house is not selling at our high price -- a blessing in disguise since we need time to recuperate, etc...
Bill called Bill Thomas yesterday and told him the news. He called Sherry two days before. Good stuff. Diane

Sent: Monday, September 19, 2005 8:29 AM
Subject: Oregon - Sept 2005 visit - part 1
Greetings from happily retired Diane!
After a satisfying week with my dear offspring, spouses and grandkids in the LA area, then a few glorious days at home (no buyers yet), I flew to Medford since I was TIRED of driving (did 960 miles on the LA trip). Mary, Susan & I had lunch and then Mary flew back to Albuquerque and I went to Dad's for a nap. Dad is looking well -- thanks Mary! I'm still hearing comments of praise about how “Mary did it this way”. Of course, my proper response, since Dad likes the way Mary did it, has been: “What a good idea. I'll do it that way too.” Examples: let the cutting board dry while leaning on the living room wall behind the door, using the chair by the door for items that would go OUT the door, buying the small box of tofu (I brought a big tub with high protein), and I can't remember the rest! Mary's yogurt pancakes are delicious and I never tasted the tofu in the scrambled eggs (also never thought I'd try that combo!).
My “Mom schedule” is Mon, Wed, Friday with flexibility of course. My first day happened to be Mom's normal 6 month doctor check up. Dr. Selinger asked Mom how she was. Mom says pretty good! The doctor had a list of our comments & concerns so focused on her knees. Doc got to see Mom struggling to stand up so we could pull her pants down for the knee examination. Doc mentioned that Mom has a LOW pain threshold. We know. The safest approach, he said, is regular tylenol four times a day, every day. It's better to manage pain then sporadically try to reduce it. The next step is adding Aleve but it has some side effects. The last step (in Mom's case) would be x-rays and cortisone shots (which she's been offered often before but refuses). I have lab orders for a UA but no success in collecting it yet.
Mom thoroughly enjoyed the new McDonald chicken sandwich -- she ate the chicken, bacon and cheese without the bread. She enjoys her food often - luckily in small portions. Mom's mind is about the same as last time -- sometimes she knows me, sometimes she doesn't, she asks questions continually and doesn't like to be alone. Her word usage is about the same -- still can carry on a conversation most of the time -- can't 'find' the correct word sometimes. Her difficulty walking is the biggest change and it's became worse in the last few days. It's 6AM on Monday morning now.... Mom is sleeping. Margaret said she had a hard night and suggested I spend the next few days looking at nursing homes & costs to prepare for the next step.
Back to sequence.....
Friday evening I went to a meeting, found some friendly people (& a friend of the folk's from church) who all suggested the Sat 9am mtg. I woke up early Sat, used one of Dad's guest passes for the Northwest gym, spent 30 minutes on their treadmill, marveled at all the weight machines to choose from and learn how to use, and went to the Sat 9am meeting. “Coincidentally”, Noah was chairing it (he gave me permission to share this). Noah is Mom & Dad's favorite waiter who we've been playing jokes with (made flyers, sent letter from Rome about Noah & the Pope performing a piano concert in Sept). Dad has some unique requests at restaurants (7-up, no ice, and an empty glass) and Noah just always remembered. Dad went to another restaurant where Noah supposedly now worked, but it was the wrong restaurant. Now he has been found -- Dad is amazed. I said God answered his prayers. Noah wants to stay in touch with Dad and give him rides. I'll work on getting that developed.
The meeting was good -- I felt like I was in my home group -- so this is my Oregon home group now. Three of us have been to meetings in Ireland and laughed about the stoic reactions. Dad's reaction was obvious when we heard the sad news that Uncle Eddie died. I thought I saw tears in his eyes so went and gave him a hug. I got a fast squeeze back but he changed the subject and just didn't want to talk about feelings (seems like positive feels are okay to talk about but not sad or negative ones). What a shame since I believe it's a wonderful subject and very healing to express them.
On the drive home, I happened to pass the growers market so stopped and brought many organic vegetable, some spinach bread and a cranberry scone (enjoyed by Dad!). The bakery booth knew Dad -- the wife told me to tell him “Merry Christmas” (his greeting throughout the year).
Dad was eating breakfast when I got home so we talked and talked and talked. I did dishes. Dad went swimming. I went to Market of Choice with THE shopping list, made chopped carrots, broccoli/cabbage, and garlic -- separate dishes this time -- and had dinner (halibut, potato, yam and broccoli) ready when he returned. I returned to Northwest in the evening, enjoyed the warm pool and weight room in woman's locker area.
Sunday AM I walked the school's track for an hour while talking on my cell phone. I was amazed the time went so quickly. I am bound and determined to exercise daily while retired. Dad and I ate yogurt pancake & tofu eggs, went to church, did the weekly garbage, some laundry and then met Mom at Wild River for lunch while Margaret went shopping.
Lunch was pleasant enough. Mom's questions gets tiring but she was easily distracted today so there was no drama.
Sunday evening I had the pleasure of being introduced to Heather & Scott's blond hair, blue eyed son Cannon -- now five weeks old. Then I sat with Mom for a few hours while Margaret enjoyed her daughter and grandson too. Dad was chatty as usual when I returned--he enjoys hearing about my adventures. His adventure was the laundry hanging clothes dryer collapsed so the back yard fence became the temporary fix. We went looking for a Mass card for Uncle Eddie. Dad's “filing system” is amazing.
Gonna grab a nap while I can.....
Love, hugs & prayers

Thanks for the update. Tis amazing about Noah. Obviously, God wants them to stay connected with one another.
Glad that you are enjoying the club.
Will you have time to check out nursing homes? Susan said that she thought Spring Pointe was the best in the area?
Take care.
love, Mary

To: Mary
Sent: Thursday, September 22, 2005 8:56 AM
Latest after talking with Susan and Margaret & getting a good nights sleep....
I’m only going to check out Fairview (today) where Stephanie Grandma was....
I just spent two days in Klamath falls area....
the blue bathroom rug DOES compliment the shower curtain well even though not exact -- plenty good enough!
tofu question -- I’m thinking about adding some to the potato/squash/leek soup I made for Dad... what do you think? How long does tofu last after opening it? Did I mention -- I brought the BIG tofu container...Dad told me I should buy the little one like you in the future. Tonight I’m doing something with a purple eggplant, white eggplant, yellow squash from the growers market. Also have another leek.. probably just steam 'em so soft for Dad....should I add tofu?? fun times!
gotta go exercise before my acupuncture apt!
hugs, Diane

From: Mary
You can add tofu to anything and everything.......it has no flavor, adds protein to whatever you are making, you can use a fork and mash it for easy consistency or cut it into tiny chunks, yes, add it to the soup etc....
I never told Dad what I added tofu to until after he ate it, then I'd tell him.
Since I usually bought the little box, I used it all up within 4 or 5 days and so I really don't know how long it lasts. I'll ask Colleen, she uses tofu a lot.
How was Klamath falls?
Glad you are getting your exercise.....tis good for one's mental well being.

From: Mary
Sent: Thu 9/22/2005 10:43 AM
To: Pepper, Colleen
Hi, to the tofu expert:
Aunt Diane wants to know how long tofu stays fresh in the ref??? 3 days? 5 days? 7 days?
thanks - to the culinary expert
love, Mom

From: Colleen
To: Mary
Sent: Thursday, September 22, 2005 10:47 AM
Subject: tofu
My trick is to smell it. If it smells bad, you probably shouldn't eat it.
Honestly though, probably 7 -10 days. It might depend on the type as well. I always use extra-firm which probably keeps longer

From: Diane
Sent: Monday, September 19, 2005 11:04 AM
Subject: beach
I forgot to mention that Mom has told me twice that she went to the beach lately..... and the water was warm, and Dad went swimming and she had LOTS of fun jumping over the waves.... and then they went across the street to a big hotel that had BEAUTIFUL white lace curtains.... we spent the night and then came home.
Thanks for sharing. Mary

It is nice to see that she holds on to positive memories. even though some details are askew. beautiful.
Peace, Tom

From: Diane
Re: Oregon - Sept 2005 visit - part 2
the rest of the story....... Monday afternoon Susan & her red head granddaughter walked over to Margaret’s to visit Mom. Mom was just laying down for another nap. Sue put Ari on the bed leaning on Mom and Ari bounced up and down on Mom. It was hilarious. Mom admired the red hair since it reminds her of her two brothers (Willie and Frank). Guess she says the same thing every time she sees her great granddaughter. Tuesday I drove Dad's car to Klamath Falls and spent two days trying to narrow down the search for an area to live when our home sells. I enjoyed some beautiful Oregon scenery (high desert, pine trees, mountains, farm land, rivers, lakes). The first day I drove the circle Klamath Falls, Dairy, Beatty, Sprague River, Chiloquin, Klamath Falls. I went to a woman's mtg at night and someone recommended her husband (also in the program) who owns Keno Realty!
On Wednesday I drove Klamath Falls, Dairy, Bonanza, Malin, Merrill, Keno, Lake of the Woods (gorgeous!) and back to Grants Pass. I stopped in most towns/areas, drove around housing areas, went into stores/real estate offices/restaurants, talked to people and mostly enjoyed the peaceful meandering. I was drawn to the Bonanza and Keno area. Bonanza was ruled out due to distance and possible deep water table problems. So Keno might be my future home if we settle on that side of the mountains. I returned in time to prepare Dad his supper, swap stories, etc. Today (Thursday) --(tis hard to keep track of days now that I’m retired!) consisted of the gym (Northwest), acupuncture treatment, my lunch/Dad's breakfast together, Dad swimming at Northwest, me to tour Fairview Health Center, shop for Mom clothes (Champion outlet), food shop for Dad, make smoothie (with tofu!), dinner, Wal-Mart (for Dad) and back to Northwest (I like to get two uses for one guest pass -- start and end my day at the gym!). Fairview is not as fancy as Spring Pointe (older building) but I liked the atmosphere, people, care, etc. There's two CNA & one RN for each wing which holds up to 30 patients. Costs is $4500 per month for all levels of care (whether mobile or not, etc). Once the money runs out, they help you apply for Medicaid. Joyce recommended someone to help preserve the assets. Susan contacted them about two years ago. We'll both keep the Monday 4pm appointment and get updated information. Tomorrow is my Mom day. Dad is planning on visiting in the afternoon (will give him a ride). sleepy time....

From: Mary
Powwow Hi, Lo, and behold, I'm finally finding the time to write about the powwow and Dad's response to our discussion. Since I've been back in ABQ, somehow, I've been on the go to a conference, Marriage Enrichment stuff, Birthright etc..... So, this am, I have a 2 hour block of time that I will be home. Yippee!!!
I gathered my yellow sheets of paper. As most of you know, Grandpa had pads of yellow paper all around his house. Tis wonderful to write notes on these papers.
Powwow:
Discussion:
Dad's - current needs - nourishment, shopping, and company - be met by Diane and then later possibly by Helen (as a paid employee) (we won't know Grandpa's future needs until after the glaucoma surgery on Oct 4th and a 2 month recovery period.......will he able to drive a bit more? will he still get worn out easily? will his vision improve? etc...)
Dad - needs encouragement to emotionally support Mom, he seems like he has distance himself from an overt emotional connection, he supports her financially, buys her books, ensures that she is well taken care of etc.....is it a survival strategy for him because he's worn out just by maintaining himself and dealing with Grandma can be very emotionally draining....... .suggestions - discussed - bring Grandpa to RR once a week to visit Grandma, once a week dinners on Sunday might be adequate cause logistically hard to get them together during the week, then Grandpa should send Grandma a card (I'm thinking about you. etc) once a week (I stopped and bought Grandpa 2 cards to get him started, hopefully he has mailed one of them by now), will try and bring Grandpa to RR once a month, phone calls are still difficult cause Grandma gets mad on the phone.....
Support team - I had asked each member of the support team - spouses, nieces, nephews, siblings etc what they thought of the current situation - 98% of them said that they are being stretched almost to the max and getting worn out and they are also quite concerned about the effects of this arrangement on Margaret........everyone wants to preserve Margaret’s health.........somehow Margaret has a lot of energy.....she's like the energizer bunny and goes all day.....support team is important....
Living arrangement for Grandma - discussed advantages and disadvantages of the Alzheimer community care center for Grandma......advantages: showering would be 100% easier, they wheel a chair into the shower at center, there would be activities and other people to be involved with, center seemed very clean, well maintained, caring and flexible staff - if Mom's up at night, she can help them fold the laundry, open ended visiting hours, individual heaters in each room, they would try and meet Grandma's individual needs according to the service plan that we write up together with the staff........disadvantages: at Margaret’s Grandma gets one on one care, at the center - there's 14 residents to 1 to 2 RA's.....(not everyone at the center is at the level that Grandma is at, some are mobile, some are more independent etc) possible trail period of a 3 month stay at center sometime in the future.....see how she adapts......Oregonians would still be involved with Dad's caretaking and Mom's caretaking would just be different but still a part of their lives (they would maybe set up a visiting schedule so that she had family company on a regular basis)
Medical power of attorney - already done - it's in the trust
Guardianship papers - not needed for Alzheimer center, would be needed if another facility is chosen, takes a few months to get guardianship papers

Discussion the next evening with Grandpa:
Grandpa - concerned also with Margaret’s health, leaves the decisions up to Margaret ....lets her decide what she wants to do, he would support and pay for etc. the decision of a facility when and if it happens,....... as needs change, sometimes decisions need to be reanalyzed and reevaluated
I asked Grandpa about what he would like with regards to his care. He said that it would depend on his health and his needs at the time. First, he would like to stay in his home and have caretakers come in and take care of him. He said though that if that couldn't work because of his health condition then whatever needed to be done is okay with him. He is open to the idea that after Oct 12th when (Diane leaves) that Helen begins to come in and do the shopping and some of the cooking for him.
Random thoughts:
One day when I was with Grandma, she said, “sometimes, I think about a nursing home and wonder what it would be like. Then, I think there's no place like home.” I showed her the activity schedule from the Alzheimer center and she read it and was interested in the different activities. I showed her the monthly meal menu and she read that (reading is one of the last skills that a Alzheimer person loses) .......Grandpa said that Grandma had toured the Alzheimer center but forgot that she's been there.
One day, Grandma said, “I asked God to take me, but He said it's not my time yet.” She was very accepting that it wasn't her time yet.
So, here is food for thought for everyone. Please “reply to all” if you have any comments, thoughts, concerns. Tis wonderful how we communicate so well with one another.
As usual, my thoughts and prayers are with all the caretakers in Oregon.....the main ones, the ones on the sidelines etc.......Tis amazing how love and sacrifice are such a major part of their everyday world............their lives emulate Mother Teresa in many ways......
Take care!!!

From: Tom
Re: powwow
Hi folks. many thanks for the news /powwow.
Appreciate and support what is being done for the elderly parents.
My thoughts are that the final decision belongs to Oregon.
It may be more financially feasible to have Helen and another angel at night look after both parents on savage street. Of course, it may not be feasible for mother to go back to Savage St. but, that is my thought. It does look like eventually, a NH may be in the picture.
She does not seem to be getting any better. I wonder if some Klonipin/valium (or some aricept) would help her sleep at night. I imagine that the NH might use those medications.
While I realize the long glennon tradition of natural and minimum medications....a visiting nurse (weekly) from provident hospital may help to monitor the sleeping medications.( I still have a contact at that hospital(the CEO is on the China committee that I serve on).
Any way, there is my two cents.
I will support whatever decision that the Oregon family make...
Let me know how I may assist.
Take care of yourselves. Tom
After further thought, I now see how necessary it is for mother to receive so much care...and be in need (eventually) of nursing home care. Dad might not be far behind..
Good to hear that he will visit mother more frequently...
Many thanks to all the main characters in the care giving.
Blessings on all of you. Tom

Re: Oregon - Sept 2005 visit - part 3
Friday -- was Mom-sitting day. Mom was overdue for a shower and a bit (understatement) resistant. She said I was bossy! I said: “Who me? I wonder who I got it from?! My Mother??!” … but we accomplished the task, curled her hair and got ready for company. The previous night, Mom was adamant that Dad was coming to take her home and she wouldn't let him leave without her. If THAT mood had continued, we were going to tell Dad not to come over. After the shower Mom was in a good mood so Greg drove Dad over around 1:30PM. Mom, Dad & I played canasta for almost two hours. We played two hands of cards and talked Mom through the steps every time it was her turn (pick up two cards, do you have any three matching cards in your hand?, put them on the table, take something that doesn't match and discard it -- the discard was placed in a few interesting places).
We had many, many belly laughs and it seemed like old times. Dad is convinced it was due the having THREE instead of TWO playing....ex. Mom & Dad agreeing that Diane was peeking at Mom's cards. Mom's normal questions were easier to distract since she had something to do. We moved into the living room and a Judy Garland tape since it was almost time to go. I took Mom back to the bathroom and she was panicking that Dad was leaving. I reassured her he was waiting for her to finish. After we returned, he did say goodbye and we quietly left. I'm sure Margaret got a hundred questions the rest of the night. 24 hours later -- she has no memory of it ever happening. Dad says it was good anyway since it exercised her brain and belly laughs are healing. Next time I'll have a working camera handy.....
Spur of the Moment ...Dad & I ate dinner at R-House so we might surprise Noah.

Oregon visit – part 4
Saturday.... Exercised at the great Northwest club... Went to my Sat AM AA group.... Went to the growers market (mostly ORGANIC farmers and nice variety of arts & crafts, etc)...... Met Kathy, Shelby, Sara & Even at a Girl Scout event..... Called Dad to see if he'd like me to cook breakfast. Timing was perfect. He enjoyed Mary's new breakfast menu of yogurt pancakes & scrambled egg with tofu. At the end of the talkative meal, he mentioned something about his book room. We decided to take the first step and just spend 15 minutes cleaning up some of his papers.
We spend at least a half hour, laughed at some things we found (multiple eyeglasses missing lens or arms, elastic cut off from top of tight socks, etc. You can now see about 1/2 of the actual table! He told me to tidy up the rest. (Mary had suggested 2 bags of trash, 1 bag of give away and 1 bag of 'keep it' for a sorting style. Dad accomplished 2 bags of 'keep it', 1 bag of give away and 1 bag of trash. Close enough!). Kathy & Shelby came over to swap cars (needed Mom's car to take her to church). Kathy's car was overheating with steam pouring out. We evolved into amateur mechanics, identified the probable hose that caused the leak, and attempted to remove it (after it cooled of course!) but didn't have the proper tools from Dad's 'extensive' coffee cans of tools. Luckily there are many friendly Oregon people to lend a hand and all worked out well. Dad went swimming and I tackled the floors & bathrooms. He came home to a clean house and dinner on the table. It's a pleasure to cook for him because he always appreciates it. After doing most of the dishes (Dad still munching on scones from Grower's Market), I took over the Mom-sitting shift so Margaret could visit with Heather. Mom was very tired after a LONG church service (she says) and went to bed early. Now Dad & I are getting ready for church here, then will do garbage and sheets, & meet Mom for a late lunch.... hugs, etc.

Oregon - Sept 2005 visit - part 5
Sunday lunch was at JJ North. Margaret said Mom didn't want to go meet Dad at the restaurant but changed her mind. You could tell she wasn't feeling good and kept focusing on how noisy the restaurant was to her ears. Mom had spaghetti that didn't have much 'sauce' so she spooned her chicken noodle soup on top of it saying it needed more 'cereal'. Her word confusion is interesting sometimes. Mom was happy to go home with Margaret (after being obsessed with who & how everyone was getting home.) Sunday evening I worked in Dad's book room and went to my meeting. It was good to see some friends I've developed over the last year or so. Monday was Mom-sitting day for me. We had UPS (eating, watching America the Beautiful video, playing the piano and trying to sing, 'playing' Racko, visiting with Dave Cotner, nap, walking in the sunshine & picking dandruff from her scalp while she thought I was curling her hair) and we had DOWNS (I can't get out of the chair, help me, please don't leave me, where's the potty?, how do I get do this? Waking up from a 5 minute nap to a continual “Is anyone awake out there?” had me throwing a pillow against the wall, then going to holler at her to wait a few minutes -- so I could change my attitude. When she laid down for a nap, I did 'stuff' for 10 minutes before laying down myself. Next time I'll get my rest, then do my 'stuff'.) I'm amazed that she remembers my name so well this time but am a bit frustrated by all her helplessness (and my powerlessness to change it!). Susan and I had a good appointment with a financial advisor recommended by a nursing home. Will discuss some ideas with Dad today. Sue & I enjoyed a leisurely dinner at a Mexican restaurant. It was a nice change from the daily routine. Sue has Mom on Tuesday and then Sue & Dave are driving their motor home to visit Kevin & Mindy & .....(with two front teeth) for a week. Dad likes to hear about my day -- but financial stuff "shouldn't be talked about while eating and then the evening is for resting....so you can tell me tomorrow". His cute tale -- he warmed up the squash soup, added chopped garlic, carrots, broccoli/cabbage to it and took a bite. It tasted WEIRD. He wondered if it went bad. He eventually figured out that he warmed up the crushed pineapple instead of the squash soup! He ate it anyway but won't repeat his 'new' recipe! After dishes, etc. we sat at the dining table as usual doing books/papers/etc. Dad read quotes from his new book – Mother Angelica, the Remarkable Story of a Nun, Her Nerve, and a Network of Miracles. It sounds VERY interesting! 'tis now Tuesday morning. I brought the Toyota to the dealer for some repairs. After Dad's breakfast, we're going to the Club Northwest together. hugs to all, Diane

Re: Oregon - Sept 2005 visit - part 5 ".....I could relate with your thoughts on your Mom day......her helplessness attitude is difficult to handle....sometimes I would always be by her, reassuring her, helping her to feel safe and not scared and other times I'd tell her that she's okay and can do it and I'd walk away......then she'd yell at me that I didn't care etc....it's hard to know what is best to do for her.......her fears and uncertainties are real to her.......... it would be interesting to see what the Alzheimer’s organizations says about this
Glad that you have built in breaks - it's important for your body and mind. Take good care of yourself!!!
love,
Mary
You and Mom and Dad are in my prayers.

Oregon - Sept 2005 visit - part 5 "Diane, thanks for telling it like it is...
Appreciate the ups and the downs...
It is very frustrating on caregivers to look after people with memory loss.
thanks for all that you do for yourself too...
e.g. club northwest and sunday meetings..and Mexican food .
take care, Tom

"Hi, Update on decision making process:
Sunday night - Margaret asked me to come up to Oregon for 2 weeks in Nov. I told her that it could be workable. She wanted me to come up to take care of Dad and be sure that he's well nourished.
Sunday night - chatted with Diane. Asked her how Dad was doing and what were her thoughts on Dad's needs etc. She said that she would email me after the eye appt. today.
Sunday night - chatted with Dad after chatting with Diane. Dad, with his good hearing had overheard Diane's conversation with me about maybe coming up in Nov. Dad said to me......”I heard that you might come up in Nov. You do not need to come up. I'm doing fine. You'll be here in Dec. and you can cook for me then.” So, Dad told me not to come up and that he's doing fine.
Monday afternoon - my former boss called me and offered me a half-time position starting this week. I told her that I'd call her back later on in the day.
Monday afternoon - I called Susan and asked her if Dad might need me in Nov. or not. She said that she'll be fine taking care of him. She said that if things get bad, she can stop working for a while. Also, knowing that Tom was going up to Oregon affected my decision on what to do or not to do.
Monday afternoon - I accepted my half-time position - 20 hours a week teaching 2 parent education classes. I'll start working tomorrow (Tuesday).
Monday evening - Tom calls me. “When are you going up to Oregon?”, he asked. I explained the situation.
He said that he'll probably keep his original plans and go up to Oregon.
So, that's where I'm at for this moment. The message I received was that things are stable for the moment and hopefully will stay that way for a while.
So, when there seems to be a need again, please do call or email and I'll see how I can help.
Thanks.
Take care!
love, Mary

Sent: Sep 26, 2005 10:44 PM
Subject: financial mtg info -- for Oregon sisters
Dad said he doesn't like to talk about finances at dinner or in the evening....so I should save all info until tomorrow...
Here's my summary: (feel free to add &/or subtract)
Bank account assets -- currently $38K
Monthly income (social securities plus pensions) -- $3278.
Medicaid says Dad can keep $19020 in assets (minimum or 50% when over $40K).
Medicaid says Mom can have $2K only.
For Medicaid planning, assets need to be increased by blue book value of least valued car plus any cash value of life insurance policies. I know one policy had a cash value of $4k in 2002. Will research.
So assets need to be reduced (currently about $17K) from accountable asset to non-accountable asset. Exempt resources (non accountable assets) include home, one car, personal property, non-revocable income annuity. Income annuity converts a sum of money (like the $17K) into a monthly pension (I've been considering doing the same with my 401K plan and have been researching them lately too!). The annuity would be set up for 5 years. If Dad dies before then, the monthly payments would continue to the end of the five years to the beneficiary (probably Margaret).
Example: a $20K annuity currently pays $18.03 per $1,000. or about 3.03% so $363 would be sent every month for five years.
Susan has received similar information from a previous conversation with an attorney.

We would need to amend the trust (with an attorney -- maybe Mike Bird 479-2678) to remove Mom as trustee...and then send copies of the amendment to the banks, etc.

Benefits/comments of doing above changes:
-- Mom qualifies for Medicaid
-- Mom financially qualifies for in-home respite care (about $1800 per month)
-- If Mom goes in a rest home, the only monthly cost would be her social security check of $432 (or whatever it is).
-- When Dad dies, the trust/assets goes to trust/beneficiaries.
-- When Mom dies, the State of Oregon does not touch the family assets since Mom is not on them (above scenario is perfectly legal).
-- If trust is not changed and Dad dies first, all assets go to Mom. If Mom is in (or goes in ) a rest home, all assets are used for her care until reduced to $2K when she would qualify for Medicaid. Care in a rest home does NOT depend on how the bills are being paid.
What do you think?

Hi girls..
Sounds like removing Mom from trust is a good idea, but allot of work. Not only will the bank accounts need to be changed, but isn't the house & car part of the trust too?? If Mom is removed from bank accounts, social security direct deposit will need to be redirected. Social security will not deposit if name is not on the account as a signer. They could mail the check instead. Do I understand right that if Mom is removed from the trust, her only asset would be her SS?? What company handles income annuity’s?? Monthly checks go to Dad?? Is he going to be able to spend enough monthly money to stay under the 19020. mark?? What happens if his eye sight gets worse..or he ends up sick for any length of time...I think Margaret(or someone) need to be put on the trust as a Power of Attorney to help Dad if needed and or on the bank accounts to pay bills if need be in the future. My mind is tired tonight...
will write more later Kathy

From: Diane
Great questions Kathy!
Yes the house needs to be changed along with the bank accounts. The cars are NOT in the trust. Changing where Mom's social security check goes is something I hadn't thought about. Margaret has durable power of attorney which, I think, already gives her the power.... will check with the attorney or get her (or someone) added.... keeping Dad under the 'mark' might be a challenge ... can you check whether his spending is rather consistent or not?
Dad HEARD my 2 minute summary while we drove to Club Northwest (KNEW the trust was wrong to begin with but let's keep it, and maybe amend it, because it protects all of us and saves us work).....and READ the summary I printed (on HIS printer) when he was ready .... when doing mail in the evening... he said it sounds like the right thing to do..... I told him I’d like to make an appointment with a lawyer...Sue knew a good one who had given her similar advice free over the phone in Medford but we knew that Dad knew a lawyer from St Anne's... Dad said to make an apt with Sue's lawyer since that was his area of expertise....and we could cancel it if necessary .... he's thinking about it all until then....Mama's calling...

From Mary:
Yesterday, Paula mentioned how her family really enjoyed the “fish cake” recipe that I had given her.
So, since Mom and Dad did enjoy it previously, I'd thought I'd send you the recipe. The important thing is for the peppers and onions to be chopped super, super tiny for Dad. The second time I had made them Dad was pulling out the peppers because I guess they were too big and he couldn't chew them. He did eat the fish cakes though.
1 small can tuna (drained)
1/4 c. finely chopped red pepper and green onion
1/4 c. mayonnaise
1 T lemon juice
1/4 t garlic
1 egg, beaten
1 C. bread crumbs (I like the Italian style.)
3 T. butter
Flake the tuna. Stir in red pepper, green onion, mayonnaise, lemon juice and garlic. Stir in egg and 4 T bread crumbs. Form into balls, roll in bread crumbs and flatten. Cook tuna patties in butter in a skillet until golden brown on each side.
(Adapt recipe anyway that you would like.)
Margaret has some horseradish sauce that I liked with the tuna cakes.
Enjoy! love, Mary"

From: Diane
To: Mary
Sent: Thursday, September 29, 2005 2:54 PM
Thanks! Dad & I talk about your great recipes every time we eat tofu/eggs and yogurt pancakes -- 3 or 4 times a week.

Hi Diane,
I'm very surprised that Dad is not tired of eating the pancakes over and over and over again. Does he still like smoothies?
I'd like to chat with you on the phone about Christmas. Dave, Colleen and I need to make plane reservations soon. I'm not sure if it's a good time for us to come or not. I'd love to see your Bill, Sherry and Richard though. So, when I get a hold of you for your birthday call, we'll chat.
Also, some lady that I met does notices in the church bulletin for her church. She is very interested in all the pro-life websites that Dad has. In your spare time, can you chat with Dad, make a list and email them to me. Then, this lady will put one website a week in her church bulletin.
Hope that you are doing well.
Take care.
love, Mary

Re: Oregon - Sept 2005 visit - part 6
the saga continues..... Had a good day with Mom on Wed (most of the time!). She watched "Because Your Mine” video with Mario Lanzo twice. We showered in between and made squash/carrot/potato/tomato soup. She loved looking at the picture on the video cover and saying how much she loved that song. Between her 1 1/2 hour nap and distracted half the time with the songs in the movie, I had an easy day compared to wanting constant attention. Dad was gone getting a hair cut -- I should say a beard cut. He says he must be going bald because the hair on his head has stopped growing. The barber cut his lip (where top & bottom meet)- ugh! Thursday -- called our financial advisor to make apt for following week. I said I was available NOW or on Tues AM. He said to come on in now. We made more progress and I review some of my own financial plans. He suggested I stop in Senior Services some day (across from Club Northwest). Went shopping for Dad at the favorite grocery store – Market of Choice. Made tofu eggs and yogurt pancakes and went to Club Northwest for exercise together. Since I forgot a guest pass, I ran home to get it and stopped at Senior Services on the way back. They kept me for about an hour, opened a case for Mom to qualify for services and will be at Margaret's for an assessment Monday afternoon. Doors seem to be opening quickly and easily, so we're walking through them with Dad's okay. Dad wanted to stop at his skin cancer doctor and check out a BUMP under his arm because it had doubled in size overnight. His doctor was gone, the secretary told him to go to urgent care or his primary care physician, the other doctor agreed to take a peek at it, numbed it, lanced it, drained it, numbed the abscess again and sent Dad home with a prescription for 10 days of antibiotics (okay even with scheduled eye surgery) and bacetraicin. Dad will be BUSY taking antibiotics & eye drops (4 in each eye with five minutes between each drop) 4 times a day! Changes in his schedule are energy draining but he is very grateful to have the abscess taken care of so quickly. I had a grand visit with Kathy, Shelby & Evan after dinner with Dad.
The backyard is SO kid friendly and inviting. Friday was my day to hunt for real estate and narrow down my search area. I found two interesting possibilities but we're not making any commitments until we get an offer on our home. Plans are being made to drop our price again and have an open house soon after I return on Oct.13. After dinner with Dad, we enjoyed a grand Fred Waring CD and Dad had questions/comments & approval about the financial stuff. until next time!

Re: Oregon - Sept 2005 visit - part 6
my my your a busy woman...... all are sleeping here...Kaden up multiply times nightly...so sat is catch up sleep for these kids..... making baby food.... caring for Kaden....not much different than taking care of Mom........ so what this about the financial guy.... are we still going to the lawyer in Medford on Thurs.... sounds like things are running smoothly with Mom.... we had a case opened on her last year if that matters... never really used any of the services...however with Medicare in the picture perhaps that will change...... q
boots ..you are so efficient..... Dad underarms abscess are somewhat worrisome.... since they show a decrease in his immune system.... since he is soooo clean I doubt that it is from excessive bacteria in the hair follicles.... of well.... perhaps some Echinacea but then again that is just one more pill....... vitamin c very good for skin infections..... sound like good plan.... abscess take their course so perhaps a wee bit more time.....ups Kaden up qqqqqqq=======

From: Diane
Date: 2005/10/01 Sat PM 05:00:53 PDT
To: Susan
financial guy -- just showed insurance policies and planned what to do with 'em.. Dad & I have requested all necessary paperwork to change beneficiaries, get cash value, etc. He suggested the senior place soon...
YES we have apt in Medford Thursday 1 or 1:30pm need to check my calendar...lots of trust stuff still to do... nice to know about previous case doubt it makes a diff since never used but they might compare notes which is fine....
Mom having rough day....asked for help (as usual)... I asked her what for? she said to help her die... ugh... told her I couldn't do that...and we moved on to more normal subjects...
Dad has two more abscesses starting under his armpit.... the lanced one seems to be healing okay... I get to put the bacetraicin on.... he's planning on calling skin doctor Monday am... will see how they develop by tomorrow...may get reabsorbed as anti-biotic kick in more? time will tell....
enjoy ur time off! actually not off...just doing different stuff!!!!

Date: 2005/10/01 Sat AM 07:48:13 PDT
wow.... miracles abound..... in the infamous Dad book room..... Diane and he have been spending a wee bit of time.... and lo and behold one can actually see the wood from the table.... something not seen in the history of Dad arrival in Oregon in'93....... ahhhh boots we are going to miss you .........thanks.......q

Thanks for all you have done and for what will be continued to be done............ Good luck on open house and the move and all.......................
Love, Carol

Re: Oregon - Sept 2005 visit - part 6
Diane, beautiful work.
Nice report.
Glad that you are active with Senior Services...
Peace and Joy. Tom

Hi Diane,
I also saw how Dad became emotionally and physically drained doing his eye drops etc. I believe that Dad's body always needs a good supply of protein to sustain him. When I was there, I also gave him hummus (another good source of protein). I would put a bit in a small, glass Pyrex dish and he'd put it on his bread and ate it. The brand that I bought at Price Chopper was “Athenos” with olive oil and garlic.
Any way that you can get more protein into Dad will help him sustain his health.
Mary
FYI - The reservations have been made. Dave and I will join Colleen and the Oregonians for Christmas this year.
Our dates are:
Colleen Dec. 16 - 29
Mary Dec. 17 -27
Dave Dec. 21 -27
So, we'll be ready to help out and take care of Mom and Dad whichever days and times that you'd like us to.
love, Mary

Oregon - Sept 2005 visit - part 7
Saturday -- October 1 (already!!!)
Grower's Market (to get scones that Dad loves -- before there's none left)(all vendors set up and selling even though it was raining!), a meeting, Grower's Market for veggies, Market of Choice for food shopping (buy all their bottled
Artesian water since they don't stock it often now), pancakes & eggs with Dad, bacetraicin on draining abscess, pharmacy run to get pill bottle with simple top.................then take a deep breath, say the Serenity Prayer, and head to Rogue River for Mom duty. Mom had a rough afternoon -- kept going back to bed and changing clothes -- over and over and over. Mom whined “will you please help me?”. I asked “Help you do what?” She said “help me die.” I said "I can't do that and God says it's not time yet since you're still breathing. Do you want to get up?” .... and we were back to 'ordinary' conversation. Mom seemed to wake up around supper time and was cheered up by a chatty, fun phone conversation with Tom in Chicago. We continued the upbeat mood and played Go Fish card game while wearing Red Hats, purple scarves, red hat pins, etc. and being silly. I was happy to see Margaret around 8:30pm but was glad she had a day off. Sunday -- went to Club Northwest twice to exercise, church and Wild River (upstairs!) with Dad. Everyone agreed it was good to skip Mom going to lunch today-- her car riding days are limited I believe.
Dad has decided (on 10/4) to start going to see Mom on a weekly basis to play cards, bring soup, watch TV -- do something where Mom lives instead of meeting at a restaurant where Mom is bored after eating quickly, etc. Evening -- relax and go to a meeting. Monday -- October 3 -- my 56th birthday! It was DARK when my alarm went off but the day was brightened when I arrived at Margaret's kitchen to start my Mom sitting day. The table had a red balloon with a purple bow, a smiley face and some decorations. Two bran muffins with purple butterfly decorations and a Happy Birthday bag completed the setting. Inside the refrigerator was a coconut cream pie with candles (and a piece missing!). I snuggled under Margaret's blankets and went back to sleep until Mom woke up at 7AM. Mom took a shower (a small miracle) and actually thanked me for it....then we had breakfast. She was a PAIN while we were eating because I wanted to eat in my pajamas and she was SURE that we would be late for her doctor's appointment. I just became stubborn and finished eating before getting dressed. Then we waited for an veerryy sssslllllooooowwww half hour before leaving an hour early for the doctor's appointment. Mom is such a worry wart and gets fearful with her concept of time. Logic just doesn't compute. Oh well.
Reassurance and distraction usually works. Sometimes nothing works so we walk away to preserve our sanity. Dr. Selinger has a marvelous way with Mom. She agreed to cortisone shots in her knees and signed a consent form. I had to sign it also.
Preparing the shot was LONG since the nurse was new, touched the needle, and had to start all over again. I didn't want Mom watching all the details and maybe changing her mind, so we ALL sang Happy Birthday to me, etc. Then Dr. Selinger told Mom that he was ready and it would hurt for a few seconds and would she please not kick or hit him. The needle went in, Mom screamed a few times, reached out to the doctor but clasped her hands together before touching him.
She was shocked that he caused her pain and never wants to see him again. He told her it should work in 24 to 48 hours if it was going to work. She said no thanks to having the left knee done! In the bathroom, she was embarrassed that she had screamed. I told her it was okay to cry out when something hurts. We stopped for a cup of coffee on the way home. She took a 30 minute nap, ate lunch and then Senior Services was here for a two hour application process.
Mom's questions were endless, she was offended that she didn't understand why I was asking for help from the government, her information was private and we were just fine the way it is. Luckily he agreed to take a nap (or we would have postponed this for another day/location). After the bathroom, she changed her mind.....but I didn't. Happily she slept for about an hour. When she joined us and started asking questions, we gave her the forms to read....it slowed her down. The interview will continue on Friday at 8:30 am by telephone. Dad sang Happy Birthday to me at supper. I had grand conversations with my hubby, offspring, grandson (how old is ancient?!!), some siblings and a few friends. I ended the day by hiking with my local friend who practices Chinese medicine and acupuncture. I slept well!
Today -- Tuesday -- Oct 4 Treadmill at Club Northwest. Dad woke up early and ate lightly.
Glaucoma/cataract surgery was scheduled for 1:30pm. I asked if he was nervous. He said no....it's just like 'Let go & let God'. It needs to be done and he's in good hands. The office was not letting any family members in the back today, so I walked the parking lot, made phone calls, talked with other family members. The surgery was delayed due to previous patients. Dad didn't get out until almost 4pm. We stopped at Dairy Queen for a blizzard and 7-up. Then we stopped at Mary's outdoor shrine, the chapel and Mary's shrine to say thanks and enjoy the sun. Dinner was many plates since he was hungry (salmon, squash soup, baked potato & yam, string beans, cole slaw). We watched an old movie & did some mail. Dad is an excellent patient following the rules of not lifting, bending, etc. He got VERY cold so went to bed with pj's & bathrobe under two down comforters. I tucked him in and put the blankets over his head (with hat) as requested. Forty minutes later (10:30pm) he asked if I was still awake. He had a strange request -- his stomach felt empty. Would I make him some of those good pancakes and eggs (thought he'd feel better with some protein)? We laughed about his revised schedule -- breakfast at 11pm -- quite a few times and that I would definitely be including this event in my email! It's now 11:30pm. Dad is sipping on his flo-essence & hot water & unsalted saltines and I'm going to bed.
Dishes are done and all is well. Good night God, good night to all!

Re: Oregon - Sept 2005 visit - part 7
Diane, Your considerate, generous care for the folks is a precious gift.
Good to hear of the balance with Club, Mtg and the phone.
peace, Tom at work.

Re: Oregon - Sept 2005 visit - part 7
Diane, You are doing a superb job taking care of Mom and Dad and all of variables associated with their lives. I am so proud of you!!
Thank you for being a super person and for being so kind and caring.
love, your sis, Mary
Wonderful news!!! Paul has returned home from Iraq. Becky picked him up at 3 or 4 in the morning today. Yippeee!!!!!!! Thank you, dear Lord. Mary

Re: Oregon - Sept 2005 visit - part 7 "holy Moses what a few days.... even taking care of Kaden is a wee bit easier..he and Mom are on the same nighttime schedule........ can't wait to get back in the routine...... on my way up to Margaret to watch Mom while she walks etc. after we move RV into side of house......... going to Medford to swim, take care of Kittiara and work at 530 pm....... feel free to call me in triage tonight..... have Kittiara tomorrow all day so she will be coming to foot doc in am and lawyers in afternoon...... love q...... so praytell what meal are we eating now.........

Re: Oregon sisters -- Medicaid, finances, will, etc.
boots looks all well research and accurate.... you are soooo good at this..... love q

Thanks for all you have done and for what will be continued to be
done............ Good luck on open house and the move and all.......................
Love, Carol

Hi everyone.
Booked a ticket for Oregon.. arriving 12;15 on sat Oct 29...
departing on Wednesday Nov 9th at 6am!! free miles ticket.
peace, Tom

Oregon - Sept 2005 visit - part 8
The days are going SO quickly..... Have been doing much organizing of financial stuff for the folks. Oregon sisters have all the details. Doors are still opening and we're walking through where we believe God is leading us. Dad had his one week post-op appointment yesterday. The doc admires his handiwork, is happy with Dad's eye pressure, takes out the stitch, reduces daily eye drops (yippee!!!), tells Dad to keep up the good work and he might get some exercise privileges back next week.
I'm making some arrangements for a shopper for Dad (detail list of what he buys and set date for doing it) and will have him well stocked before I leave Wed. evening. We've made progress on freezer attitude -- we ate fish that was frozen for eight days and it was delicious. Mom had a horrid Sunday and a beautiful Monday. It's amazing the difference from day to day. Time for my acupuncture apt –
hugs to all,

Diane,
Good to hear from you.
Great to know of the transition for Dad...Getting a shopper for him is a great idea. And moving on to the frozen foods is delicate diplomacy. Nice work.
I hope to do some swimming while there...and be generally supportive.
Margaret was asking for more time...but this what I can do.
Work will have to just carry on.
I imagine you are winding down...and hope you have a good journey and re-entry to Hilmar..
take care.
Tom
p.s. Talked to Paul Pepper yesterday. he said he went out on a date with his wife on his first day back in Idaho. Cute.

From Diane:
Shelby's okay but in the hospital. Kathy called Margaret because Shelby was having problems....so Mom told me. We prayed for Shelby and Kathy and had a short conversation. I called back after an hour and talked with Lori. Mom was content watching an old move. I called Tom and we jumped to some conclusions that were incorrect.....we thought maybe Shelby had stopped breathing since she had a breathing tube. We were wrong.
My random phone call evolved into being the email secretary:
Shelby had seizures from Rogue River to Medford.... while on her ambulance ride...even after a double dose of valium. She's on some heavy duty anti-seizure medicine now and should sleep for the next few days...in the hospital. She was incubated since she was SO heavily sedated. She woke up, freaked out about the tube in her nose, the tube was removed, she's breathing on her own but her head must be elevated. The tube may be reinserted as a safety precaution while she's so sedated. Kathy, Sara and Susan are at the hospital.
Shelby is in room 1155. The hospital number is 1-800-944-7073.
Keep the prayers going! The support of having family nearby is priceless.

From Tom:
Just phoned to Oregon...Saturday eve about 8ish.
Spoke to Sarah.....Chris has Evan...
Sarah is going out to get coffee for Kathy
Then spoke to Sheila...She came down from Portland..
She started her 12 week maternity leave two weeks ago.
And she will get 12 more weeks maternity leave after the baby is born...
Sheila said that Shelby Rose just woke up...
Sheila told her that Joey came to see her..
Shelby Rose asked for a hug....
So Joey got into the bed and gave Shelby Rose a big hug....
Touching.
Kathy too busy to come to phone.
Shelby Rose really needs my Mom now, said Sheila Danielle.
Sheila's Dan will come south on Monday. Sheila says that her pregnancy is going well and quickly.
all for now..
thoughts and prayers, Tom
From Susan:
greetings from warm, busy Oregon....... Shelby is on her way home from ram... they extubated her yesterday in the ER..gave her dilantin to stop her seizure, did lots of test with no new results...... she is awake, seizure free, having difficulty walking....hopefully this will pass in the next day or two..... Sheila drove down yesterday....going to check on Dad.....swim and to work this pm....love, blessings and hugs....q"

From: Susan:
Greetings … Just chatted with Kathy..... she took Shelby to the neurologist today..... she is back walking normally as of this afternoon...in fact Kathy said this late afternoon one would never know what she went thru on sat..... Kathy is overwhelmed by phone calls and offers of help from Shelby teachers and friends..... she is hopping to send her to school tomorrow..... amazing how God works in our lives.....Shelby walking normally today is indeed a miracle..... love ....q