"My Pool"

This feels like my private pool. Most of the time I am the only one in it. At the beginning of July ist I began exercising in the evening. After the monsoon summer storms started, I switched to mornings. Lately have been alternating mornings and evenings. I love evenings the best. I go to the pool about 8:00 and it is rare anyone else is in the pool. I can't handle the sun, so make sure I am always in the pool when it is shaded, and it is by 6:00 pm and as late as 9:00 am.
This pool brings me such joy. Ever since I began exercising in the pool for 30-45 minutes 3-5 times a week, all my pain is gone. Lately, I have even been able to get rid of the neck pain I have had for many months. My massage therapist says the difference is amazing, and it really is. The water takes all joint pain away! I have gotten rid of hip pain, knee pain, and little pains here and there, and it is so wonderful. I LOVE the pool!! I feel so blessed and so grateful to have this wonderful pool that I can use anytime I want to! Yea!!!! Thank you, thank you!!!!!!!!
This evening it was at least 100 degrees outside (or more), but the water was perfect and there was a constant breeze, and it was perfect and felt perfect. When I got out of the pool I was cool- and I instantly had my 70 degree weather (that is what it felt like). Who needs anything else or to be anywhere else? I am so grateful for my beautiful condo and this pool that goes with it-feels like living in the lap of luxury to me and I LOVE it!!!

Summertime...and the days are ...hot-what else?

This from Phoenix news:
We did it. At 12:40 p.m. Wednesday, we broke the record for the most days at or above 110 degrees in a given year: 29.
The good news: The National Weather Service forecast for the end of the week calls for temperatures staying below 110.
As I write this it is 110 degrees. But I am cool as a cucumber and could care less.
It is odd, even I complain about the Phoenix heat in August- can't ever remember a year in the 40 summers I have been here that I haven't complained. Oh, maybe the first summer, or even the second. It never seemed that bad to me then and I couldn't understand why people got cold here in the winter. I have never worn a winter coat in Arizona, but then who does? That's the part that keeps you here! No snow, no ice, no scraping ice from icy windshields, not any of that stuff- thank goodness!
But this year is different too. I doubt I have complained this summer, or this August at all. In fact, the three summer months (ending as of Aug. 31st, tomorrow) have gone by in a blip to me. I can't believe we have had summer and I have never noticed. I was not aware of the heat this year until I heard people complaining, and then I did pause and wonder why.
I think when you have worse problems, the heat does not get noticed. It is the only explanation I can come up with. I never even know it is that hot, or what the temperature is, until I hear it on radio or TV or someone tells me, and everyone knows I don't read the paper anymore or watch TV much, and it is a rare, rare day I even know what the news is.
I guess I focused more on that stuff when I had no real problems to focus on.
To me, this summer went by in a blink of my eye, and the weather was fine.

Now, on to other matters of more importance, at least to me. I saw Joe today at noon, as I have realized the only times he might be awake is when they wake him to eat meals, of which he eats very little. He was half awake and did have his eyes open most of the time I was there. I was glad I went at noon, as his nurse from hospice came and I was able to talk to her and spend time there when she was with
Joe. His mouth was very dry. She says that may be why we can't understand his words, as his mouth and tongue were very dry. I did buy a "sippy" cup this afternoon and a small bottle with short attached straw and hope this will help him swallow more fluids. He has forgotten how to use a straw most of the time, and the liquid runs down his chin if he doesn't swallow what is given to him. He is about the same, not so grumpy today at least, but never smiled. His caregiver, Donna, said he did know his own name today when she asked him, and clearly said it to her, so that was good. Usually he doesn't know what his name is. Not sure he knew me today but think he did. And that is life and what matters for today.

Even a chocolate cream pie didn't help!

I was told today that Joe woke up unhappy. This is rare for him. He is usually always in a good mood. I have not seen him like this before. He did not really want to eat much today and refused food this morning. He has been just plain grumpy the entire day.
I bought his favorite chocolate cream pie at Marie Callender's and took to him. He ate a small piece of it- didn't refuse it that is for sure, but never smiled. Afterwards I asked him if he liked the pie, and he said (in a not very happy tone), "it was all right." Not his usual reaction to chocolate cream pie.
He never smiled, never said he loved me today, and was generally in a very bad mood.
I did feed him a small amount of mashed potatoes and gravy before the pie, but he did not eat very much at all. He was thirsty so I gave him some cranberry juice. He would only open his mouth a tiny bit and I could not get the food in his mouth. I asked him to please open his mouth more, and he tried to hit me! Now that was a surprise. Not a good day.
He never understood it was our anniversary and never understood the reason I brought the pie, and never grasped anything really. He was definitely in another world today.

He did talk some but it was mostly his lips moving and no sound or little sound, so you never know what he is saying. And he did lots of moving his arms in the air, and doing all the strange things with his hands and arms that he has been doing for weeks.
I watched the news on the TV in his room and when he fell asleep, I left.
Let's hope tomorrow will be happier for him.

Happy 37th anniversary

THIRTY SEVEN YEARS WITH JOE

August 28, 2007 is our 37th wedding anniversary.
We were married in 1970 in Las Vegas at the Wedding Chapel on the Strip.
Yep! That’s the truth! Only wedding photos taken were by a camera someone
at the wedding chapel had, and I was handed the roll of film so I could develop
it when we got home. Yes, we stood in line at city hall downtown to get our marriage
license, then drove back to the motel, got dressed to be married, and drove to the
wedding chapel. Our witnesses were people we did not know. Who would think
such an unlikely situation would produce 37 years of marriage? No one probably.
We had both been married more than once before. It was an inter-racial marriage, so no one thought it would last. I think that just made us try harder and work
harder at the marriage. We were determined to show them all that we could make it! And we did! The first year we celebrated our anniversary every month. I remember on September 28th, Joe said to me, “well we showed them! We’ve been married a month!” Marriage at its best is not easy. You have to want it and you have to work at it, and in the end it is always worth doing that.-At least it was for us.
Most people give up at the first sign of trouble anymore. We survived lots of “troubles” and also lots of happiness, joy, and fun. Today is bittersweet. I know it will be the last anniversary we have together, and Joe does not even know it is our anniversary. We have always (even last year) gone out to dinner and celebrated our anniversary. He has always bought me a card and given me flowers. Twice we have celebrated with a week at Lake Tahoe. So there are lots of good memories, and I am thankful for that. To tell the truth, I am thankful for the whole” enchilada”- the entire 37 years, and I know Joe is too. Even though he doesn’t always recognize me at first anymore, and can’t remember my name, I know who I am, and I know who he is. Almost every time I see him, he tells me he loves me. Even this past Sunday evening,-two days ago. Joe’s lifetime friends have told me I am the best thing that ever happened to Joe, but I know he was the best thing that ever happened to me.

A day of good fortunes

This morning driving to my chiropractor and then lunch, I listened to my newly received CD set from Wayne Dyer, on his new book, "Change Your Thoughts, Change Your Life". I listened to CD side 1 yesterday and had such a major insight from it, that I knew if it was the only one I received, the cost of the CD's was worth it. I also decided to listen to CD 1 several times before moving on to the second CD of the 6 CD set. Today only a few minutes of listening and I heard something I did not hear yesterday, and I yelled, and stopped the CD- pulling to side of road to write it down. It brought tears to my eyes. That statement from Wayne Dyer was, "In misfortune, fortune hides." Just another way to say "it's all Good", but in a way that actually said even more to me, and was especially appropriate from all I am going through right now on my life journey. We are only on plant earth to grow, learn, and change- so of course, this set of CD's was a must-have for me. With everything that is going on right now for me, I am amazed daily and constantly in the wonderful things also happening to me.
I saw my chiropractor today and it was a free adjustment for me as a "happy birthday gift", and then on to lunch at Macaroni Grill for a birthday lunch for me from my longtime friend, Bette. I had the most incredible lunch and we had a nice visit- oh, I had the grilled scallops and spinach salad- so wonderful!! It is my new favorite at Macaroni Grill!
Then had a phone call from Rev. Mitzi and I met her at Joe's care home right after lunch. Had a wonderful visit with her. Joe was sound asleep and would not wake up, so we let him sleep. I kissed him and that usually wakes him up, but it didn't today.
Mitzi also spent some time alone with Joe, so I could talk to the social worker.
Joe's new hospice social work arrived and I spent way over an hour talking to her. Her name is Diana Bolls and she is superb! Every person who works for Hospice of the Valley that I have met, is a special person- it takes a special angel to work for hospice, and that is what Diana is. She told me I could not have a better home or caregiver for Joe than the one he is in. Donna brewed fresh coffee for us and she knows I love sugar-free French Vanilla cream, and always serves that to me in my coffee. When I left, Donna also handed me a container for my dinner- it was a delicious pasta dish with olive oil, red peppers, feta cheese, olives and artichokes in it! So I was gifted not only with lunch today, but my dinner also!

This is what I want!

This was sent to me today by a wonderful friend and it is way too perfect, and have to share it!

My Next Life...

I want to live my next life backwards!

You start out dead and get that out of the way right

off the bat. Then you wake up in a nursing home feeling better

every day. When you get kicked out of the home for being too

healthy. You spend several years enjoying your retirement and

collecting benefit checks.

Then when you start work, you get a gold watch on your first day.

You work 40 years or so, getting younger every day until pretty soon you're

too young to work.

So you go to high school: play sports, date, drink, and party.

As you get even younger, you become a kid again.

You go to elementary school, you play, and have no responsibilities.

In a few years you become a baby and everyone runs themselves ragged keeping you happy.

You spend your last 9 months floating peacefully in luxury spa-like conditions: central heating, room service on tap.

Until finally . . .. . . You finish off as an orgasm.

A kick in the stomach

"A kick in the stomach", that is what Dr. Gary Martin (leader of the Alzheimer support group I attend) said to me yesterday when I told him Joe did not know my name twice this week when I went to see him. He has been working with dementia patients & training people to care for them, for 27 years, and he knows. I love it when someone like him looks right into my eyes, and knows my pain- sees it and feels it, and knows the right words to say. It is a real jolt of new pain when your husband does not know you, or know your name. After I tell him, then he seems to know and remember. I don't think he knows his own name anymore either.
But as Rev. Mitzi said to me last night, on some level he still knows you because he is getting mad at you. He got mad at me twice last evening. I am the only one he does that to, and it is because he knows he can do that with me and it is safe. We always know the people we can do that and get away with it, because they knows us and care about us, and we can't destroy what we have with them, just because we get mad at them. So Joe does seem to still know that.
But as the experts tell me, he is detaching. He has to detach, that is part of the process. So as sad as it is, it is all good and necessary.
Tomorrow I meet with his new hospice social worker and then later in afternoon Rev. Mitzi is coming to see Joe again and bringing Orgena Rose, a black jazz singer and beautiful songwriter and singer, to sing for Joe. I sure want to be there for that. She sings at my church and I know she is good and Joe will love her singing to him.

New friends & dinner at North Restaurant

This evening I met Patti DeLucia who lives near Boston, Massachusetts. We have been emailing each other for a few months in a fitness/weight/health online group that Marian Carol created- there are 5 of us who write each other as a group each week. Patti and her niece, Denise and Denise's fiancee, Edson, were in Arizona for a vacation this week. They have been in Sedona all week, taking side trips to Monument Valley and other places, and are flying back to Boston tomorrow. Patti emailed me and said she would like to treat me for my birthday and asked me to have dinner with the three of them at North Restaurant in Kierland Commons (in Scottsdale). What a wonderful and fun evening we shared! Great food, great conversations, lots of fun and laughing-just getting to know each other. Edson is from Brazil and has the most beautiful smile. Denise teaches high school history. I fell in love with all of them and we hugged and hugged when we had to part company. It was a very special night, and one we will all remember. Patti works for the carpenter's union and was happy to leave Boston and get away form the high humidity, and loves the dryness of Arizona.
The heat factor was not a big concern for her as she so wanted to get away from high humidity- she said it had been 101 degrees in Boston with the humidity almost the same as the temperature. I know I wouldn't like that either. It was great to hear all their stories and all about her large family- brothers, and 8 nieces and nephews. So fun to meet new people and create new friendships- I loved it all.

First Day of KIndergarten!

My five year old grandson Isaac in Illinois on his first day of kindergarten-today!
Thank goodness for the Internet and instant pics of these major events on the day they happen!

Life is Eternal

***************************

Joe had a wonderful visitor Monday evening. His visitor was Rev. Dr. Mitzi Lynton, who is from my church, Creative Living Fellowship. The photos on this page are of her. Her website is: www.dare2create.com
I recommend you check it out. She called me yesterday afternoon and wanted to visit Joe. We met at his home an hour or so later. Mitzi was born in London, England and has been in Phoenix since 1995. I think Joe was entranced by her British accent and her voice and her smile. I also think she fell in love with him as much as he fell in love with her. She was so wonderful with him, talked to him so gently and sweetly, and his eyes never left her face. She asked if he wanted her to come back and visit him again and he said "yes". Then later she told him she had to leave but she would see him often and soon, and he said "don't leave town"! We laughed over that and he said to her, "I made a funny". She prayed with him and was holding both his hands and he did not want to let go. He really enjoyed her visit and she was wonderful. I am so thankful she visited him, and I was very happy with the caring and loving way she was with him. He really enjoyed it too. The song by Carly Simon is from Mitzi's website. Thanks so much Mitzi and God bless!

Life is eternal
And love is immortal
And death is only a horizon.

Life is eternal
As we move into the light
And a horizon is nothing
Save the limit of our sight.


I had a phone call today from our new Hospice social worker, Diana. I am meeting her on Friday afternoon at Joe's care home. I have loved every nurse, volunteer, CNA, and social worker that I have met at Hospice of the Valley, and know they have to be angels on this earth. Diana sounds as incredible as rest I have met and can hardly wait to meet her. Joe could not be in better hands than he is right now, unless he was in God's hands, and we know he is anyway. Every contact I have had with Hospice of the Valley and every person who works there, has been amazing, loving, and unbelievable. Also, Donna and Peter Pekurar, his new caregivers are angels on this earth also. I am blessed and so is Joe to have all these wonderful souls in our lives.
Today I saw my Heart Care P.A. and my BP was 128/82 and my pulse 60. It is amazing how good my health is, even though my emotions and mental state have been quite unbalanced at times. Even though I am doing my exercises in the pool and eating right, I have not been able to lose anymore weight. She told me because of the stress levels I have, my cortisol is high and I probably will not lose any weight until this intense stress is gone from my life. My body is holding on to the weight. So just hang in there, keep doing what I am doing, and it will eventually all be ok.
After leaving the Dr. office, I headed for Borders Cafe and spent this afernoon doing class work- my current class is the History of Judaism, so read my book (some of it) and answered several pages in my workbook. I hope to complete this class before the end of August, so I can work on my paper for my degree all of September. Life goes on, and my classes and reading keep my mind distracted and occupied with things other than what is going on with Joe. I am blessed.

Brooke Astor

Brooke Astor (March 30, 1902 – August 13, 2007) was an American philanthropist and socialite who was the chairwoman of the Vincent Astor Foundation, which had been established by her third husband. She was also a novelist and wrote two volumes of memoirs.

From Heidi this morning:

I couldn't remember when we were having dinner what Ms. Astor's first name was....I knew it was a B name. I thought Blythe, but knew that wasn't right. At about 3:30 a.m. it came to me. Her name was Brooke Astor, and it was either her father (probably not grandfather) than was the very wealthy man who drowned on the Titanic.

Just think, no one really knows what "so, you think your Ms. Astor?" means but a privileged few....

The story behind all this:
My mother and grandmother used to say the expression "oh, she thinks she's Ms. Astor!" all the time and especially if anyone was being what they thought was "uppity". These hundreds of old expressions I heard all through my growing up years in Oklahoma, are all stored in my brain, and when they pop out and I actually say them I am stunned and wonder where that came from! This happened at dinner last night. I was telling Heidi that Emma Ruth was walking all be herself (and very proud of herself too!) and I said "she thinks she's Ms. Astor!"-just meaning she is highly impressed with what she is doing and very proud of doing it! Everyone started laughing and I was shocked I had used that old expression. Heidi then told a story of how when she was 18 and had her first real job, and got her first credit card- she went to Goldwater's and bought all these things. When she brought them home to show me, I said to her "who do you think you are, Ms. Astor?"

Of course, I do not remember this but Heidi swears it happened and I am sure it did.
Trevor is cracking up and says "who is Ms. Astor?"
He claims he had never ever heard me say that before. I think Jimmy said Heidi had said it once, as we tend to use the old expressions our mom's used without even realizing it sometimes. Funny, how this old stuff is stored in the brain and surprises one when it suddenly appears.
I told Heidi today anyone as old as me will probably remember the expression and certainly know who Ms. Astor was!
Anyway, it was the source of much laughing last evening and I am still laughing about it today. Laughter is the best medicine, so it is all good.

My grand-baby Emma

I always knew Heidi was a writer, but Deidre has proved herself my child also. (ha)
Already knew Deidre had more of my traits than she probably wished she had, but here is one more added to the list. Now have two daughters who are writers- I told Deidre she is "blog" potential! I love this that Deidre wrote and sent to me this morning.

My baby Emma is walking! I thought about how incredible
it really is that I get to be a part of this. Those beautiful little
legs of hers will be the same legs that she walks to her first
day of school with, that she walks to pick up her diploma,
down the aisle at her wedding, into the hospital one day to
go see her own grandchildren. I have cherished this moment
with my two baby boys as well, but it is different with Emma,
because I know this will be the last time I get to be a part of one
of my very own little babies walking for the first time. Everyone
says "You will always be my baby" but for my entire life when I
see her walking around as a grown women with those same
legs, I will truly see her as my little baby girl and remember how
I could hear those tiny precious bare feet smacking down on
the hard wood floor coming around the corner and watching
her as I bent down, with her huge smile and her arms stretched
out as far as she could get them, running into my arms on a
regular day in the middle of August 2007.

Heidi and Ruth's birthday celebration

This evening I met Heidi, Jimmy, and Trevor at Grimaldi's in downtown Scottsdale and we finally celebrated Heidi's and my birthdays. I had never been to Grimaldi's and loved it-fantastic place and fantastic food. Heidi and I had most of a ricotta and tomatoes pizza- cooked in those wonderful coal fired ovens and thin, thin crusts. Delicious. Also had a great house salad. Jimmy and Trevor shared a pepperoni pizza.
The atmosphere is wonderful and it was a fun evening. We had a lot of good laughs and everyone was in a happy mood.
This morning I went to church and really enjoyed this day. It is the first day in 7 weeks I have not seen Joe or fed him. I just had to take a break, and am only going to go see him every other day for awhile.

I also enrolled in a new class that begins October 2nd through November 20th. My class is INWARD JOURNEY,IN-DEPTH SPIRITUAL DEVELOPMENT and is term 1 of 3 (24 of 90 hours), and is the beginning of my classes for licensed spiritual practitioner.

I also signed up to be a vendor at the Holistic Intuitive Festival on October 27th.
This is going to be a great all day event at Creative Living Fellowship, so add this to your list of events to attend. I plan to have a table to teach and inform people about Healing Clay Therapy. I will give out information, clay samples, and have clay to sell. This will be a festival offering many healing modalities and services.

This was really a good day and I enjoyed every minute of it.

Happy Birthday Heidi!

Happy, Happy 47th birthday, Heidi!!!!!!!!!!!!!
I wish you happiness and send you love.
Mom

The rest of my Saturday was very sad

Even though the blog below this one is a happy blog, my morning was very sad.
This morning I attended the funeral services for my friend Carmen Gress. Carmen was my neighbor on 17th Place, the house we lived in before moving to the condo in early 2006. I have known Carmen since 1996, and we did many lunches, and shopping, and talking in those years. She was an expert professional seamstress and made many things for me, pillows, drapes, bed skirts, tablecloths, napkins, and altered a jillion things for me, and the list goes on and on. But here is my favorite Carmen story- when I was in hospital in 2002, for my second knee replacement, I was showered with gifts and flowers and visits from friends. Carmen came to see me all 5 days I was in the hospital and what she brought me was CARMEX lip balm. I have never used anything else since. I cannot be without it. It was my favorite gift and the one I needed most. My lips were so dry and cracked and parched from being out cold from 7 hours of anesthesia sleep, and the lip balm was exactly what I needed most and what only Carmen knew to bring. Thank you Carmen!
I hit Savers many times with Carmen. I was looking for bargains for myself, and Carmen was looking for bargains for anyone she knew who was "in need", or for a friend or relative. Never knew her to buy anything for herself. She made all her own clothes and they were exquisite. Also, since she wore "child sizes", she had to make her own clothes for them to fit her. She was the tiniest person I have ever known.
The service this morning was a wonderful tribute to her and there were at least 300 people in attendance! The luncheon following services at Auntchiladas, was wonderful also, and a huge room was reserved for all her family and friends. Richard you did a great job and paid perfect respect and tribute to Carmen! Well done!
Carmen was born Janaury 15, 1940 and died on August 12, 2007. Just 3-4 days before she died, I received a birthday card from Carmen and Richard. Amazing! Some well and functioning people can't remember anyone's birthday, but Carmen was dying and yet she remembered! I will miss you, Carmen. But am oh so happy to know you are whole, well, and free in spirit, and no more pain and chemo!

Visit with Monique and Denysia

I remember the day Denysia was born. Monique and I worked together at APS, and on my lunch hour I went to the hospital so I could see newborn Denysia! Joe and I were one of her god-parents. Can it be this was 14 years ago? Yes, am afraid that is so. Denysia was 14 this past spring! I have known Monique for 16 years. They came to visit me today and then we all went to see and visit Joe. Had a wonderful afternoon with them and it was great to get caught up on all our "doings" and news.
When I began working at APS in Accounting in 1991, APS had just had a huge layoff, and the mood was not good there. No one was very nice to me, a new person hired when so many of their friends were layed off. The only person who was nice to me and became my friend was Monique. I will never forget that. Even though I have had to try and forget that in 1991 she referred to me as "elderly". Wow! And that was 16 years ago and I was not real happy to hear her say that in reference to me, and probably wouldn't like being called elderly today either! I have forgiven you Monique, as realized as young as you are (the age of my youngest daughter Deidre, in fact) I may have seem old to you! Fooled you, huh? Love you Monique, and Denysia too and glad you are both in my life.

Some photos of Joe

Cano and Joe, taken last week at the Hospice of the Valley unit in Scottsdale.
Rest of photos are at Joe's new care home in Scottsdale, near Sweetwater and Scottsdale Road. As you can see, Joe has lost a lot of weight. He did eat real well this evening, as I fed him dinner at his new home. Donna is a great cook, and the food was very good. I think her cooking may spark his appetite a bit. Today he was slightly better than yesterday. He talked a lot, but most of it I could not understand.

Today was Joe's second day at his new home and it was not a good day for him. He was hallucinating most of the day. This morning he told Donna there was a bird in his room. He is once again reaching out with his arms for something, and constantly moving his hands and fngers and doing various things in the air all the time. Donna said he ate a scrambled egg and sour cream for breakfast and for lunch some sweet potato casserole. Of course, he liked the casserole as am sure it reminded him of his favorite pies-sweet potato pies. I fed him some pudding this afternoon also.
But he was "out of it" all this day and not able to verbalize or say anything to us really. What he did say, you could not understand. At first I was not sure he knew me. I asked him if he knew me and he shook his head no. I then said "I am Ruth- your wife", and then he sort of smiled and he knew who I was. Heidi had been to see him around noon, and she had told me that she could not talk to him or with him today.
She was right, and neither could I. I took some photos of his new home but have not been able to post them so far.
Today after staying with Joe for an hour, I did get a massage,and it felt really good.
But I do feel really tired tonight. I also finished classwork (typing up my workbook pages of questions I had answered) and got one more class finished and in the mail. This class was called Awakening the Mystic Within, and was a very good class.

Thursday- Day of Joe's move

The first thing I had to do today was go for my 6-month appointment with my oncologist. At my last appointment on January 31st. Rachel, the P.A. asked me how I was and I said "absolutely great-nothing wrong with me!" I was dreading seeing her today and vowed I would not answer how I was if she asked me. In January she discovered I had a heart rate of 300 and sent me directly for an EKG , and I was then sent to heart specialist. Have been on coumadin and heart meds ever since. Today I was hesitant but all my vitals and blood testing done today turned out great-in fact my heart rate was a wonderful 74 today and that made her happy (me too). Then she did a breast exam and was not happy with that especially, so now I have to go for a mammogram. I wasn't scheduled for my next one until January, but that all got changed today. Am asking everyone I know (me too) to affirm I am whole, well, complete, and have perfect health in every way.

Leaving there I headed to the hospice unit where Joe was, and at 1:30 pm the transport arrived in the "ambulette" (isn't that a cute name?) and took Joe to his new care home. Everyone at hospice was sad to see Joe leave but glad he was better and COULD leave. And by "better" we mean better than he was the day he arrived at hospice. He is of course, much worse than he was a month ago. But he is eating and today he was in good form. In fact, one nurse told me that when she went in to see him this morning he said "where have you been?" and when she told him, he said "you only need to take care of me". So he was talking today and expressing himself well at times.

When we arrived at his new home and the transport driver got him into his bed in his room, then the owner, Donna, came in and asked him if he wanted some juice and introduced herself to him and told him she would be taking care of him. After she left the room to get his juice, he said to me, "do you know these people?".
I am still laughing over that!! I then once again explained to him that yes, I knew them and I had met them this week when I had been hunting a home for him, and that they were very nice people and he was going to like them. He just said "OK".

About 10 minutes later our previous hospice social worker, Samantha, arrived to check on Joe and see if he was in his new home and all right, and she had with her his NEW hospice nurse, Karen, who I have already realized is wonderful. She spent time with Joe, reviewed his meds,and said she had seen Joe before at his other home when she visited there a couple times with Millie, his previous hospice nurse. So she already sort of knew him and knew how much Millie liked him too. Hospice is now taking care of all his meds and having them delivered to the home. They also provided him with a hospital bed with side rails and of course, had already provided him with his wheelchair. The wheelchair had gotten misplaced and gone to wrong place, and I spent 2 hours getting it and returning it to the home. So did not get to go to my cancer support group dinner tonight, but it is ok-am too tired now to go anywhere. It's done and over with now, and we move forward. It feels good to have him in this home, and I feel I can trust these people to care for him just as I want him cared for. That is very important to me.
Another new chapter has begun.

Joe's scheduled move......

It has been almost 4 weeks (on Saturday) since Joe's drastic changes and 4 weeks of feeding him every day, sometimes twice a day, and since my life really changed once again. Now with Joe moving back to another care home tomorrow, I hope that by next week I can start getting back to normal for me. Normal for me is exercising in the pool 4-5 times a week, and reading and doing class work for my Bachelors degree. I am almost done with my requirements, but had to stop everything this past four weeks. I know me, and I couldn't do classwork and reading, and care for Joe the way I wanted to. So I put the school work aside and feel this coming week I can begin to do my normal thing again. I plan to go feed him dinner tonight, since I had to miss his lunch because I had a dental appointment. I have an oncologist appt. at 11:00 tomorrow so may or may not get there for his lunch but will go after my appointment. The move to his new home is scheduled for between 1:00-2:00 Thursday (tomorrow) afternoon. Hospice send an ambulance to pick him up and I will follow the ambulance just as I did when he went to hospice on July 30th. He will have been in hospice about 17 days.
I did get to the pool this morning and spent 30 minutes exercising, and that felt good. I feel so much better when I do this.
The name of Joe's new home is Compass Rose, 6835 E. Pershing. The phone number is 602-699-5141. It is only 3-4 blocks from the Villa on Sweetwater, where he has been since last September. Hard to believe that in a few weeks he will have been in a care home for a year.
My friend Carmen Gress's obituary is in the newspaper today. She was just 67 years old. We were diagnosed with cancer around the same time and both in radiation at the same time. She made all my drapes and dust ruffles for the beds, and other things for me when I moved into this condo. We were friends for over 10 years and I will miss her. We had a lot of good times together. It is heck getting this age. Lots of good things about it, but the worst is that friends begin to die. I can remember when Joe and I hated to get calls from his mother, because every call to us she seemed to tell us about someone she knew dying. It seemed then like it would never happen to us. And then...here we are. And I feel blessed to still be breathing!

Tuesday update on Joe......

I have had lots of e-mails asking about Joe, so this blog is serving the purpose of my only typing it once, then sending it out to everyone. Any day you want to catch up on the blogs on Joe, just go to: http://ruthiep-thoughts.blogspot.com
I began this blog on September 16, 2006, the day Joe first moved into a group home, so I could let friends know what was going on with him, and also release my emotions and feelings-have always journaled, so it was a natural for me.

My believing something better would happen for Joe, and my intuition, proved right on target today. The owners of Compass Rose Care Home are from Yugoslavia (Donna and Peter), and Donna was a medical social worker in Yugoslavia and has many years of caring for people, and it is what she loves to do. They are very friendly, loving people and I spent a wonderful hour with them this morning. Their home is lovely, Joe's room is beautiful and even has brand new wood floors in that room. Very cheerful and inviting. I met the other four residents and only one is bed-ridden. The owners live on the premises and there is an additional caregiver.
Very beautiful back yard and patio, with tons of wonderful plants and flowers.
A bed with rails will be ordered from hospice and also a wheelchair, as she wants to get Joe into the wheelchair. So that is all good. He will probably move in this Thursday, or whenever hospice can set up the ambulance to take him there.
You can write me an email if you want his address. He will only be 3-4 blocks from the home he was in for 10 months.

After I left the place that is to be Joe's new home, I went to the hospice to see him and feed him his lunch. They said he had eaten hardly any breakfast today, but he ate a very good lunch for me. Then he got mad at me and said I fed him too much! This is what he always does, and I just tell him I had to over-feed him because he is getting so skinny! He ate half of his mashed potatoes, and half of the shredded chicken covered with gravy, and most of the soft cooked green beans. Then he ate almost the entire cup of ice cream, plus drank some cranberry juice- so this was all good. Then he immediately falls asleep again!

I received a nice e-mail today from Ray, a childhood/high school friend in Oklahoma, who now lives in Texas. As I was replying to him, the answer came to me why Joe is fighting so hard to keep on living. I wrote:

"This stuff makes you strong or you crumble, and I have no intention of crumbling. Joe is a tough cookie and fighting to live. We had thought 2 weeks ago he wouldn't live through the week. He has this strong determination, and I am not sure what he is fighting for, BUT he is, and God must still have something for him to do. Even if it is just being kind and sweet, which he always is. He never complains, never asks for anything. Guess everyone could learn something from him."

Yes, that is the answer, he still has something to teach us. Now, if only we will learn. To be kind, sweet, loving to everyone, just as he always is. And he never complains. A good example for sure.

Changes for Joe in the works......

This morning I attended a meeting at Joe's hospice to determine whether he would stay there or go elsewhere. It was really already decided for me before I got there. I thought I would be able to present "my case", but that was not how it happened. I learned that because this particular hospice unit is more like a hospital unit and provides the highest level of care, you must be critical to be able to stay there. Guess we were fortunate he was able to spend 2 weeks there as of today. But...because he has stabilized and his care can be maintained, he is being released from this unit. He will still be on hospice, just as he has been since spring. But he will have to be moved to another adult care home. I was told all this by the Dr. who heads this unit, and by two hospice social workers. It felt like a blow and it was, but I had already prepared myself for it. I did not fight it at all, simply told them I understood.(but could not control the crying) I have loved this hospice and the nurses and staff and volunteers, and hate to leave it. I had already decided driving there, that if this was the way it went, I would know something better was going to happen for Joe and for me. I repeated this quote as I drove to the hospice this morning, and internalized it for me and how I would accept what was said.
"IN EVERY ADVERSITY, LIES A SEED OF EQUAL OR GREATER OPPORTUNITY!"
I just knew in my heart that something better would appear for us.
I did calm down and let the decision go, and moved on to what had to be done. I was given a list of homes to check out. I did check out one home today but was not sure I wanted Joe to go there. When I got home late afternoon I had a phone message from my hospice social worker with good news about one of the homes on the list. She had spoken with the owner and found out one bed was available. I called and made an appointment to see it and meet them tomorrow morning.
This home is only for five residents and so Joe would make the 5th one. The owners live there and so care is more "on hand" and personalized. It sounds perfect and will know tomorrow morning. I have a good feeling about it.
Also this afternoon I returned to his previous care home and packed his clothes and "stuff" and got everything moved from that home. His old home was excellent for him for 10 months, but now he needs more care.
Now I am tired and sleepy and time to call it a night, and know tomorrow all will be well.

Wednesday update at the Hospice

There was a harpist at the Hospice unit today and she was wonderful. She told me she has been coming there and playing the harp and singing to patients since 2000. Her name is Danielle, and her specialty is music therapy. What a blessing and she comes once a week! She brought her harp to Joe's bedside and asked me his favorite music, and then she sang some Nat King Cole, Ray Charles, Frank Sinatra, and more. Then she brought in a CD and she has established a diverse library of CD's for the Hospice (she visits 3 other hospice units also). She put on Jazz torch songs- I think she said 40 songs and put it right by his bed near his head, and he never opened his eyes, but he smiled.
He would not wake up today, and barely opened his eyes for only a few minutes. He was not interested in eating either. The lunch served was perfect for him to eat, but I only got a few bites in him, and then he began choking on everything. So then he refused all food and I do not blame him. Too hard to eat anything when all you do is choke, and it was scary too.
I had no idea I would agree to this so soon, but I gave my ok for him to have puree foods. That is better than not eating at all, so that is what is going to happen.
He is losing so much weight.
It is a good feeling knowing he is in good hands with so many caring people at Hospice. Maria, the chaplain came in and talked to him, and he never opened his eyes then either, but he smiled once at something she said to him. So he does hear and hears better than he used to (it seems, might be wrong). Maria told me hearing is last thing to go, but for him it has gotten better, at least for awhile.
I have also had a talk today with Diana, the dementia RN, and she feels he may be able to continue staying at hospice and not have to go anywhere, and that is my hope and prayer, so please say a prayer he can stay there and not have to be moved again. He seems to like it there, and everyone there is so wonderful, loving, and caring.
Monday evening I am moving his things from the group home, as he cannot go back there. That is my last paid for day there. It is another new chapter now.

Tuesday evening with Joe at Hospice

Just got home from spending couple hours with Joe. It was a weird evening.
They said he would not eat lunch (maybe had 2-3 bites is all) and then would not eat dinner either. This was first day in over three weeks that I could not be there to feed him lunch.
I got there a few minutes after dinner had arrived and they had tried to feed him.
The problem is that I have been the only one for over 3 weeks now that can feed him. I did give them some tips tonight and asked them to write them down and put in his folder.
Anyway, he was totally out of it tonight and doing all kinds of weird things. I just watched and listened to him for an hour. He does all kinds of things with the sheet-hard to describe. And he talks to the TV and talks to people you can't see and just babbles on and on. Never know what he is going to say, but most of time you can't understand any of it.
Anyway, I scraped the tuna off the bread (it was a sandwich) and spoon fed the tuna to him and he ate it all, and also ate a little cup of ice cream. So at least he ate something today.
They are beginning to think he might only eat for me, but I think it is I just know how to get him to do it. I teased him tonight and made him smile and I often give him ice cream and then switch back to the tuna, so he never knows what he is getting. I have learned all kinds of tricks with him.
It was obvious to me tonight that he needs to be in a home where he can get more care than he has had, because he has changed so much. He tried many times to sit up and to get out of bed, but he never could. He does not have the strength to pull himself up anymore. I will know next Monday if they will keep him any longer at hospice (I wish he could stay there, of course), but he does have to have a place if he leaves, that has more skilled care, and preferably a dementia unit.
That is my prayer-that we find the perfect place for him.
I don't know what to pray for anymore concerning Joe, so I just pray for his highest good to be done, and that all is in divine order. I don't know why he is still here. He must have a purpose that I know nothing about. One thing is true (as always, everywhere he goes) and that is that everyone loves him and talks about how sweet he is. He is an easy patient for them to care for, and he never causes anyone a problem.

Definetely some good news!

The good news is the meeting on Joe will not happen until NEXT Monday. I asked for this and they said ok. I love Hospice of the Valley, They reinforce for me that they were founded for the FAMILY, and always their first question to me is "how are you coping?", "what do you need?", "we are here for you.". When I told them I was going out of town Friday through Sunday, they said no need for us to rush then, and also that it gives them more time to get plans made for Joe, and also to see how he does this week. The doctor who would be at the meeting (who is over this unit of hospice) had no free time to meet this week anyway, except late Wednesday afternoon. So everything just fell in place, as it was supposed to.
Joe was very aware and doing really good today. He is very difficult to wake up, but the nurses know all the tricks and are good at waking him. Once he was awake they rolled him to move him a bit, and then I fed him his lunch. He ate every bite that was on the plate, and then thanked me for the food! He drank a full glass of cranberry juice, most of a glass of water, and shredded chicken with sauce and noodles, and some vegetables, and then a cup of ice cream!
He is totally different from how he was last Monday when he was put into hospice. At the meeting we will talk about his options and what is best for him, and they will have an idea where a bed might be open in a nursing home with trained staff. It is still a possibility he could go back to the home he was in, but that will also be discussed. I just have no real faith he could adequately be cared for there, at the stage he is in now. In past three weeks there have been major changes with him.
I am very happy he can stay at hospice another week, as the care is so good there, and the people are all wonderful who work there.Two people there have stolen my heart- one is a volunteer named Norma, and the other is the chaplain, Maria. They
are both too wonderful for words. Thank you Spirit for this blessing.

What a beautiful morning

When I woke up this morning it was 80 degrees-unbelievable August morning for Phoenix. So nice and cool this morning. I went to the pool and did my exercises and enjoyed the cloudy morning. Did not have to worry about the sun and it was just great!
Today I will go see Joe and feed him his lunch and hope to meet with my social worker from hospice, and the Dr. in charge of the unit, and the team leader at hospice- and find out my choices and plans. I need another home for Joe if he leaves hospice, as the group home was not adequate care for the stage he is in now. He is not stable, and changes from morning to evening often, so he will need more care than he was getting in a group home. Sine he has Lewy Bodies Parkinson, it can always change suddenly and you never know when. No warnings, just sudden changes.
I am praying to get the answers when we have this meeting.
This is my birthday week, and I am also hoping for a good week.

Early birthday celebrations

On Friday night I had an early birthday dinner with my friend Theresa Andrade and we had a most delicious dinner at the Fish market-it was wonderful. I had some very good orange roughy and Theresa had shrimp. We talked over 3 hours and had a great time.
Then tonight, Saturday, my friend Elaine Reed and I celebrated our August birthdays together by going to a Chinese restaurant called Joyful. What a great name and the food was wonderful too. We also talked at least 3 hours. Yes, I spend a lot of time talking with my friends and I love doing it. (plus talking with friends is good for your mental health) Elaine also gave me a very beautiful blouse!
I needed the breaks both nights and it was very enjoyable. Elaine came over to Joe's hospice before we went to dinner- and it was her second time to see him there this week. I fed him lunch and dinner both today. He ate about half of his lunch and tonight he really ate well, ate all the tuna salad he was served, plus some cooked diced soft beets, a vanilla pudding, and some ice cream.
He was calmer and better tonight than he was at noon today. He has many mannerisms anymore that babies had. It is like he has regressed from the two year old I have felt I was caring for, to a baby now. Incredible how the age regression occurs, and amazing to witness.
I am really trying to take care of myself in this whole process, so today had a very good massage, and tomorrow morning will do exercises in the pool.
"Life is just life and nothing is wrong!"
...quote from Ann's newsletter today & so very true.

The world is full of Friends...just reach out!

I am part of an email support group for nutrition, fitness, diet, health... and am one of 6 people in this group- 2 men and 4 women. Two in Arizona, one in Florida, one in New England state- think it is Connecticut, and one in Cabo , Mexico. What fun it is and we are all bonding and loving writing each other- we write all our emails out to everyone and when you answer , you answer to everyone in group. My friend, Marian who owns a retreat with her husband Gary near Sedona, started this group. All of them but me have attended her retreat- oh, maybe one other guy hasn't, but he is a friend of the guy in Cabo and in fact they are best friends and he wanted to be a part of the group too. We share life stories, our relationship issues, recipes, diet tips and suggestions, inspirations, & times we eat the wrong foods and promise to get on back on our own individual food plans daily- it is great. Kevin in Cabo came up with this new mantra, and we love it, so will share it. We are all very different from each other, and yet we are forming this incredible friendship with each other. What a great idea this was!
Kevin's' new mantra and the response from Patti in Florida:
I really love the new mantra. Commit...Assert...Adapt. That would work not just in the area of nutrition, but in virtually all aspects of life.

For me, it has been a good way to get my mind off all my challenges this week (even for a few minutes) and have a break mentally with these new friends.

Joe is still at the hospice. He seemed to have maybe "plateaued"- and after two weeks of getting worse each day, he leveled off for a couple days, but it seemed to me last night and today, he was declining again. He was not very responsive today and for the first time ever with me, he would not eat. In fact, he just didn't want to wake up. I got him awake for a few minutes and got 4-5 bites of jello down him, and then he refused to eat anymore and went back to sleep. I know when he does this, to just leave him be, as he will eat when he wants to, if he wants to. Every time I see him he is different. Last evening he was so changed from the morning, and was jerking and shaking. I knew it was all neurological, it is like there is a short in his brain wiring. Very strange to watch, and made me very upset. When I left I felt like a "yo-yo", and it felt like being pulled up, then down, and then thrown out to the side. I never know what to expect each time I see him.

Eckstein Center-Hospice of the Valley

Story below photos in previous blog. Even though this makes you cry, he is at peace and in no pain. It is a lovely place. He deserves only the best.

Wednesday lunch with Joe

I stayed with Joe quite awhile today and also fed him lunch and he ate the most he has eaten in WEEKS! The meal was perfect for him today and he ate it all. I then met from 1-2:15 with a special RN who is a dementia expert and learned a lot more and was able to ask her a lot too. She says he can hit a plateau now after 2 weeks of decline and then start another decline. It happens. They will evaluate him again in 2 days. She can push for extra time there but can only keep him there so long, and he then would have to go back to the home until next decline happened. Her biggest concern was me, and she asked me how I cope with all of this and how I have coped the last five plus years. After I told her, she then knew I was ok. Yes, I have my moments,(which is perfectly normal) but I am ok. I learned the hard way what happens when you don't take care of yourself, so now I do. I told her anytime I get down and sad, etc. I just do not allow myself to stay there, but a very short time. After all we are the only one who has control over our own minds, and we can think as we choose, and do as we choose, it is all up to us. She said "you are here feeding him and seeing him all the time and crusading for him and you take great care of him, and you have to have a life too."

She is the most knowledgeable person on dementia's I have ever heard or talked to. She also said he might have blackouts and not see sometimes, he may have breathing problems, and there may come a time they take him off the meds he is taking as they cannot even work in his body anymore. He has stem cell loss and all that is happening shows that. The cells in the stem of brain just die. But he was fine this noon and quite responsive to me. Last night I asked him if he knew he had moved to another place and he said yes. I told him he was in a new building where he will get better care. He said, "I think we are going to like this place." Just amazed me. The RN said he will have moments now and then of saying a full sentence and awareness and other times he is so far gone no one could reach him, and he says nothing- just as she said-it's a roller coaster, and that is how I have seen him do also.
I did me good to talk to her and know I can call her any time also.

His nurse today said he had some scrambled eggs for breakfast, and had slept the whole day. I did finally get him awake to eat, but it was not easy. Although once awake he was fine, and even drank almost two glasses of apple juice. He can only do it with a straw but I make sure he gets it down. For lunch he had mashed potatoes, the tender tips of soft cooked broccoli, which I hid in mashed potatoes so he would eat it, and finely diced shredded chicken- very tiny pieces in some gravy. All very soft and he said it was good and loved it. I just want him to like what he eats and not be fed that pureed crap. So I always refuse to let them bring him that.
Every day is different. I know they may not keep him there after this week, and that bothers me, but I cannot do anything about it. I control, I change, I do what I can, and have to let the rest go.

The words of wiisdom from my 5 yr. old grandson

This was in a note from Deidre today. That little Isaac has always been psychic-he is amazing. I love this one about what he said about when people die.
Ruth

Isaac knows something is happening. he seems to be more anxious for the past 2 weeks, more than normal and about 30 minutes ago he said to me. " mommy, when people die, they turn into care bears and live in the clouds at care-a-lot." And in the past week he was asking about the " grandfather Joe" clock, even though its been here and working for a year. and was concerned that since grandpa gave us his, he didn't have one. and in the car he said his (Isaac's) middle name, Joseph, came from his grandpa Joe.

A day I didn't expect...at least today

I left home at 11:00 this morning to go to Joe's care home to spend time with him and check on him, then feed him lunch. Thought I would be home by 1:00 probably. It turned out to be 8 hours later when I came home. Joe is now in a hospice facility near the 101 and Shea in northeast Phoenix- or is it Scottsdale-sort of all runs together in that area, so not sure.
I had called the hospice social worker I work with this morning and asked her about him being in a hospice facility but was not sure he was ready for that. I needed her to assess him and see what she thought. It was my gut feeling he needed to go, as the care would be better. She called me when I was there and said she would be there at 1:30. She and his hospice nurse, Millie. both came and stayed for an hour. When I finally asked her what she thought, she said no one could know for sure but that it was her gut feeling he was dying and should go to the facility. Millie agreed and even said that in her 7-8 years as a hospice nurse, she had not seen anyone decline so quickly and rapidly. She saw him last Tuesday and could not believe the difference in him today.
They did all the paperwork and made the proper calls and said an ambulance would pick him up between 3-4 pm. It turned out that the ambulance did not get there until 5:30 and by the time we got him to the hospice and assessed and settled in, it was 7:00. It terrified Joe being put on the stretcher and he never understood what was going on. I tried to tell him when I saw the ambulance pull up, but it was obvious he never understood what I was telling him. I just said we are moving you to another building so you can be better cared for. His eyes were size of saucers, and his arms were up in the air moving every which way. He does this all day long, even when he is asleep. We believe he is doing the work he used to do. Samantha, the social worker, asked him if he was working and he said yes. She asked him what kind of work he was doing and he said "construction". He use to pre-wire new homes as they were under construction. So that is what he is doing and he works hard, as he works all day long, asleep or awake. It is mesmerizing to watch him. To quiet his arms after we got to hospice, I would rub his arms over and over, and it seemed to calm him and he stopped moving them.
It has been quite the day. Tears off and on all day, many emotions. The girls cried when he left the care home. Everyone loves him wherever he goes. His nurse said they will fall in love with him at the hospice too. All day I felt honored to be with him through this process. He is a special person, and there is nothing easy about all of this, but I know it is all as it is meant to be.

Sunday update on Joe

About 3 hours at Joe's care home is my limt as is
so depressing and Joe sleeps all the time now.
He was worse today than yesterday-way more out of it
most of the time. Even had trouble getting him to
eat tonight. My minister and husband were there over
an hour. (Michele and Lonnie) They are so great.
Joe seemed glad to see them and they both spent time
talking to him, and then rest of hour we talked and
Joe stared at the ceiling. He stares off for hours
if he is awake. After I fed him I talked to him a
bit and then he fell asleep. I got there at 4:30 or
so and left at 7:00. I am going to call Hospice in
the morning about him.
Chico said for me to talk to my social worker and
ask he be placed in a hospice facility as he will
get better care at this stage. So plan to find out
tomorrow if I can do that.
I had asked them to have certain things for him for
dinner tonight and they said they would but none of
it was there. I was glad I took the quiche that I
made for him last night, which he ate, and gave him
a bit of some potato salad they had and then a yogurt.
I am not happy with the care at this stage for him.
It has been a great place until he had these things
happen two weeks ago.

Thank God for friends

I have always said friends were my family too, and they are, and they are so there for me right now when I need it. I have had so many beautiful calls and emails, and want to share two of them I got this morning, because the message in them is universal for everyone, not just me. I have more but these two made me cry this morning and that is ok too.

Dear Ruth,
Thank you for this message. It brings back memories of my experiences taking care of first, my father, then my husband, and then my mother when they were dying. Each experience and circumstance was different, but I remember feeling as you expressed. As sad and stressful as it was, it was also a "gift of time." I remembered thinking of the first line from The Tale of Two Cities,:"It was the best of times and the worst of times."
I can remember looking into their eyes and seeing an innocence and purity of spirit. When I expressesd this to a retreat director at the CASA, he said that from his experience, it was like looking into the eyes of God.

(Sheila was the leader of my cancer support group at Wellness Community)

And this from my dear longtime friend Theresa:

Ruth, I know in my heart Joe feels your presence at all times and knows that you are his love. Joe's mind may not function the way it used to and his body is reacting to all that confusion, but LOVE never stops. I believe that when Joe talks he musters all he has left in him to say the one important thing left, who he is and what you mean to him.........by saying to you - I LOVE YOU. My friend that is a blessing and wonderful memory that you will always have.

I know the GIFT you speak of and we a truly blessed to have experienced it. Not too many people have the strength to be a part of a wonderful place of nurturing and guiding someone home.

These two just said it all. And explain the gift involved and the blessing in everything. Theresa's mother died a few years ago, and she knows.
I also consider my friends a gift, and love all the emails pouring in from them, My minister just called and she will see Joe on Sunday and I was able to have a nice talk with her. The support is wonderful and I thank everyone.

In every adversity........

"Nothing divine dies.
All good is eternally reproductive."

"In every adversity are the seeds of an equivalent or far greater benefit."
Both of these quotes are from Ralph Waldo Emerson, and I think of them this week.
So much happening, so much sadness, and so much good...all at the same time.

I made a decision on Wednesday evening that we should just let Joe rest in bed and sleep. Sleep is all he wants to do anyway right now. So yesterday was the first day of this, and I fed him in bed. I go every day for a few hours and I am always there at a mealtime, so I can feed him. This way, I know he has had sufficient food, at least for one meal. We have him completely on soft foods now. Yesterday I gave him some mashed potatoes, small macaroni and cheese, and applesauce. I just wake him to feed him, and wake him now and then to say something to him. He knows me and he knows I am there. Several people saw him and talked to him yesterday but not sure he understands what they say or what is going on. Cano called him on the phone and said what he wanted to say to him, to let Joe know he loved him. Joe smiled, even a small laugh, when Cano said he wished he were here and they could go get a beer. Jana and her son Evin came to see Joe, and Jana is always so wonderful with him. Everyone loves Joe,and it is good people are saying this to him. I know, he knows he is loved.
The only thing he said to me yesterday that I could understand, was that he loved me.
Karina was there and prepared the mac and cheese and potatoes for him, and that is not even her job-she is manager of the four care homes Jana and Peter own. She is so kind and loving and it was so nice having her there. Nancy S., who is an activity person who comes to the home, and who I have known for years (her father has Parkinson's and is in a home) also came in to see Joe. As hard as this all is, I know it is all good. I also know it makes you stronger and also have more empathy with others, when you care for someone like this and are present with it all. It is not a burden, it is a gift, to experience this. I do not say this because it "sounds good", I say it because I know and believe it.

A day of challenges

Life is a school, and we are all here to learn lessons, and I have learned many in the past couple weeks. I learned today not to assume all is well at Joe's care home, and to double check everything, and to not always believe what I am told. But I did have my opportunity to share what is happening there with the owners, Peter and Jana, and they are wonderful. I went over to their home this afternoon and we all talked for an hour. Then I went to the care home and stayed another couple hours. I fed Joe his dinner, as was told this morning he could not eat or swallow his pills because the choking was so bad. It was bad this morning, did learn that for sure, but I wanted to be sure he got some nutrition inside of him today. I mashed up a baked potato and put butter and salt on it and he ate all of it. Then Maggie put a piece of baked chicken, well seasoned, with a can of vegetable soup in a blender. Sounds gross to me but didn't look too bad. She warmed it and I fed Joe most of it. I think it bothered me more than it did him. Then he drank a banana protein drink and some canned peaches, I chopped up for him. I was just glad to get some food down him. I think he can eat enough if they will take the time and patience to do it.

When I first got to the care home he was asleep, so I sat in his room and read one of my books for class I am taking on Judaism. I watched Joe, and he moves his hands all the time anymore, even in sleep. He was making things in air with his hands, and was asleep. He moves them all the time when he is awake also, and feeding him he is like feeding a 2 year old. He reaches for every one's glass and wants the glasses of people on both sides of him, and he knocked over his own glass. You have to watch him every second and watch his hands especially. At one time while he was asleep, he tried to take off his clothes. It is like his hands always have to be doing something.

Sitting at the table with him and seeing the blank eyes he has, and no comprehension of anything (barely) it is heart breaking. I would rather see him gone, than look into the blank eyes. I looked at all the people at the table, struggling just to eat, and know I never wanted to be in a home...ever. To me it is worse than death by far. When I left, I kissed Joe on the forehead and said "I love you." and he did say back "I love you.". I left there once again crying. It sometimes feels like more than I can bear, but of course, I can, just don't want to. I know my blogs are sad but this is a sad time, and a sad week. I told him today I was ok and I would be ok, and asked him if he realized I would be ok. I feel sometimes he is hanging on because he thinks I need him and doesn't want to leave me. I just want him to know I will be ok and he doesn't have to hang on for me. Chico said it best, when on Sunday she said, "Joe needs to go home." And she did not mean where I live.

More pics taken at Joe's care home

Story of these pics is in blog below.
Elsie and her two daughters
Maria and her two daughters
Elsie. age 95 and Sammy, age 5
Joe in his new wheelchair

Birthday party time at Joe's home

Today was Elsie's 95th birthday and I was present at her birthday celebration. Her two daughters were there (one lives here and one lives out of state), and her cake was absolutely beautiful. They had balloons and party stuff and all had a good time.
It was done right after lunch. Maria, who works at the home on weekends, made the cake! It was even more delicious than it looked and it looked fantastic. The little girl is Maria's 5 year old daughter, Sammy.

I also got photos of Joe's new wheelchair which was delivered on Friday afternoon.
When I got there he was in living room and he was listening to his Ray Charles CD.
I sat down right by him and talked to him. I always tell him any and all news I have, whether he gets what I am saying or not-he listens and gets part of it at least. Then a rather sad song came on CD about a love relationship and the words were "Something in me is going to die..how can I go on...must say goodbye." When I heard the words I knew Joe was going to take that on a personal level of his own "going" and sure enough, tears were rolling down his eyes. Then the music said, "please don't go away from me. I can't stop loving you." By that time we were both crying. I was crying because he was crying. Then Ray Charles goes into another song "Heaven help us all", and Joe cried even more. Just in last week or so he has become more in tune with his feelings, more sad, more aware he is not doing very well, and I know he realizes what is going on with him. I can see it in his eyes.
It all makes me sad I can hardly stand it anymore. I asked him if he wanted me to turn off the music and he said no. Believe me, I was wanting to turn it off, because it is hard watching him cry and know he is aware (at times) of his own decline. Joe never cried, so this is all new and unusual for him. This happened last week when some other music was playing too.

I have asked them to only give him soft foods. In fact, the two girls working yesterday recommended it, and I called the home mgr. this morning and asked everyone be notified to give him soft foods. At lunch when I was there today he was being fed food hard for him to chew and swallow, and I spoke up and asked he not be fed that, and then took it away from him and fed him egg salad spoon by spoon myself and I fed him the pudding and also the birthday cake. I was mad and everyone knew it, and the girl feeding him tried to deny she knew to feed him soft food. I found out later she was lying to me, and I had an idea that she was. It was not a good scene but changes will be made. Joe chokes way too much on anything not soft, and I have good backup to support me with the homes mgr. and the owners, so this will be done. I am there all the time to see and know and insist Joe is taken care of in the best way possible. He deserves that and this is the first problem I have ever had but it will be solved. In the photos they really show how thin Joe has become. And that is why I insist he be fed properly. I fight for those I love, and I fight for what is right.

Sunday stuff

I went to services at Unity today and don't think I have been there for close to four years. I saw so many friends, it was like a reunion of sorts, and a very happy time. I cannot even count all the friends who welcomed me and hugged me and it was just incredible. I think I will plan to go there once a month, as I loved Richard Maraj, their new minister. To "add the frosting on the cake", Daniel Nahmod was there singing ONE POWER and Maraj's message was also on Power. I was up until 2:15 this morning working on my paper for my degree, and my subject is Power! I got 2 more pages for my paper from Sunday services today! Talk about synchronicity-wow!
My long time friend Chico, met me in the courtyard and went to services with me. After service, Chico, Elaine and I went to lunch together at Pei Wei and sat and talked at the restaurant until 4:00 pm! Then Elaine and I talked another 30 minutes in the Unity parking lot when I took them back to their cars. I then went to see Joe, but he was asleep and they did not want to wake him. They said they would feed him when he woke up, as he was missing dinner. The girls told me they were not going to give him what the others were eating anyway (think this is why they wanted to feed him after others) as he cannot chew up the food and needs softer food. So they are going to blend some things together to a more liquid state and feed him. They said he is just not getting enough food, which is true. Not sure he can make a difference but it is worth trying. I will just go back tomorrow and see him then. I also think he is sleeping more, or at least longer. I felt so sad when I left there, it just makes me cry to see him like he is.

Audrey's Angels

Yesterday a retired couple sang and played guitars at Joe's care home and it was all the old country western music of my high school days in Oklahoma, and I sat there and cried! They would sing a song, and I would say "Hank Williams! I used to listen to this song on the jukebox at the malt and hamburger shop I worked at when I was in high school!"
I had to get up and leave the room-it was all so sentimental!
There is a company called Audrey's Angels and retired people VOLUNTEER to perform at nursing homes and care homes. So it is a different group every Friday and this was this couple's first time there- and with me clapping and crying and cheering them on-they had a wonderful time!
Such a great idea for healthy, retired people- volunteering at care homes and nursing homes. The residents love it. Their favorite time is when music is being played or sung.I consider every time I go there, it is my way of cheering everyone, so know them all by name and talk to them- I choose to be a ray of sunshine in their lives and know that I am.

Emma Ruth's birthday bear

Just to remind her she also has a grandma in Arizona!