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Life With Mom

October 4, 2014

Thursday I sent my two sister and a close friend this email:

Late yesterday afternoon, Mom’s doctor called.  She said that Mom was about to turn a corner into the last stages of dementia.  She said Mom has lost weight, isn’t really interested in eating and she had two spots beginning on her bottom.  Not wanting to eat and losing weight means she doesn’t have her systems working very well, so making sure she doesn’t get sores will be a big priority.

 She will continue to go to the Center for as long as it benefits her, then they will have to have another doctor see her at the home.  Just because of distance.  She wanted to ask if I would like to have Comfort Care for Mom from now on.  It is their hospice type of care.  It means it will be easier for Judy and Didi so that went something happens, they don’t have to call 911.  There will be people to come and decide what works best for Mom – it is for the times when the Center isn’t open.
Dr. Myre said she couldn’t predict how long, especially since Mom is still strong.  It could be 6 months, it could be more.  She said Mom’s brain isn’t connecting to her body very well – she probably won’t be walking any more and at some point she will be bedridden.  She has noticed Mom has declined a lot – I’ve noticed it the last 2 or 3 weeks.
 I went to see Mom on Monday, but she was very sleepy and a bit cranky, so I didn’t stay.  Last Friday she spoke so softly I couldn’t hear her and she was very sleepy.  I went in the afternoon because Judy thought she might be more awake in the afternoon.  When I come in the morning she has had her meds and right about then, they kick in.  She also doesn’t seem to know me, so that may be how it will be from now on.
 I am going up to the Center today to take Mom downstairs for a haircut.  Dr. Myre said she didn’t like telling me over the phone about it and if I had been there she would have given me a hug.  I said I would be there today, I will collect my hug.
I am trying to wrap my head around this and it may take a while.  I have wanted her to let go and make the transition; but now that it seems much closer, I’m not sure what I am thinking and feeling.
I received answers from all three.  This from my younger sister:
It’s hard. Yet Mom has been ready to go for a long time. A geriatric doctor friend says that when they stop eating, it’s a sign they are ready to let go of life. Palliative care (Comfort Care) is a very wonderful thing. They are focused on making Mom comfortable, and helping the entire family deal with the transition as the patient enters Hospice Care. Hospice (and Medicare coverage) begins (according to Dr. Jeannie) when the patient cannot walk, talk, or feed herself. You will have a dedicated team available there to see Mom through this. 

You have already created a stellar safety net to take Mom through the final stages of life. Hospice care opens more resources for Mom, and for you. It is also totally covered by Medicare, freeing you to focus on walking with Mom through this process of releasing. Hospice people are great, so take advantage of the things they offer. They know so much about this part of the process and are deeply tuned into the spiritual aspects of dying, as well as the practical physical aspects. 
It is very disorienting to see someone so powerful in our lives become so weak, and to disappear as the dementia progresses. At the same time, there is a strange liberation, because all the old rules don’t seem to apply any more. 
This transition time is not only about Mom making her exit from the planet. It is an opportunity for all of her children to be “born again” and reinvent our lives. The life we knew is dying, but new life is continually being born. 
And from my older sister:
Thanks for keeping me informed. Candy, your thoughts are so healing and such a help. Yes, reinvent ourselves. Love, E
And from Char, who has been through this with her Mom:
Thanks for the update on your mom.  I’m frankly not too surprised (having been down this road before), but I know it’s hard.  Do make sure they keep after those sores; no sense making her uncomfortable, if you can help it.  My mom had those, too, but of course she was bedridden for quite a long time before she died–as in about 4 years–so it wasn’t to surprising.  However, the fact that your mom is losing weight can mean not only disinterest in food but a gradual slowing down of organs, tummy not as able to absorb nutrients, etc.  Be prepared–there may come a point when she refuses to eat at all, and that will be her choice, but it’s hard to deal with.  
 
I think Comfort Care is an excellent idea; we had that for my mom, too, and it really does help.  They can help you anticipate the changes you will see from now on, and that will help you be somewhat prepared.
 
I thought your mom had declined quite a bit since the last time I had seen her, but it had been several months, so that wasn’t too surprising, really.  When you see someone frequently, the changes seem much more gradual.
 
I hope you collected that hug!  If I were there, I would give you one, too, although today you probably wouldn’t want me to–overnight I have developed a full-blown head cold!!  It started with a sore throat yesterday, and BOOM! here it is…..sniffing, dripping, sneezing, etc.  I took a Claritin, and that has helped a little, but not enough! 
Believe me, I am so glad I have begun to ask for help and let others know what is happening.  I have been glad I don’t have to do it by myself.  Plus, when I have opened up to other people, I have been amazed to find so many others with the same kind of situation.  Even so, it isn’t a cakewalk.
To be continued . . . . . . . . . . .

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In This Moment

September 26, 2014

It has not been the easiest week I have had, so I am working on seeing where the gifts are in it.  It may take some more time and more work to take the emotion out of it before the gifts become clear.

I have had that “coming down with something” feeling all week.  When I had such a dry throat into Wednesday morning, I knew I needed to go see Cindy for some acupuncture to nip it in the bud.  I went to Breakfast Club in the morning, felt as if I hadn’t been there for several weeks.  Then I went to visit Mom – not a good day.  It was her 96th birthday.  As I wrote in an email to my two sisters and my good friend Char:

Mom didn’t know who I was and told me to go away.  I know it’s not personal, even so, it still hurts and it is hard not to take it personally.  I took her an apple pie and brownies for the house; also gave her the maple sugar candy from Ellen.  It didn’t register.  I’m still looking at it personally and emotionally; working on the objectivity part – slow going.  I am not even sure what I am feeling beyond upset.  I probably need time  to let it simmer on the back burner, maybe I can put it in words for myself.

My older sister  sent this :

Happy birthday to Mom, though she may not know it; we do. Just read Lee’s post from Sunday, and even at this distance it’s a “sucker punch to the stomach” to hear about her. I’m so glad Char, who knows, was there with you, Lee. Still, we honor her for all she did in her earlier life, how much she gave to us, and whatever may be happening with her now in the “thin places.” My love to you both, her other daughters.

Later after the  Wednesday email, my younger sister had this to say:

My last verbal contact with Mom was on my birthday a year ago. I called, and she was having a bad day, and yelled at me and hung up the phone. I had only just gotten long distance back (long story, no need to elaborate) and felt glad that I could call her after not being able to for a couple of months. 

It was a strange gift. Mom always said when we had our Sunday phone conversations when she knew she was heading into the thin places, “Don’t worry about me. I’ll be okay.” And I told her, as things got dimmer, “It’s okay for you to go, Mom. Don’t worry about us, we’ll be okay and we’ll see you on the other side.” When she yelled and hung up, I felt she was giving me permission to stop trying so hard, and to let her go on a new level. It was out of my power and control. 
It’s a new moon in Libra today, and a day of new beginnings. As Ellen said (and Daddy, too) we must put this ending/new beginning in God’s hands now. For some reason, this is how Mom needs to make her transition. She’s saying goodbye and releasing her worries about us (she worried all the time) and releasing us, and releasing all definitions of who she was, except that she is more than what she is right now. She’s letting go of all boundaries and restrictions even as the circle of her human body becomes smaller and smaller, more diminished with each day that passes.  It is the only way she can do this now, to sink into the dementia and into eventual rest. 
Lee, it’s the hardest place, to be there and see and feel it, and I know you have such a tender heart. But in God’s hands, it is not personal or a rejection of you. Or of any of us. 
It is a liberation. If she cannot remember, if she must be in that other world where we cannot follow (at this time) she needs that space, as Ruth, not as a our mother, or any role she played in life. She’s getting ready for the next life, entering a “womb.” She is giving us permission to release her, and to be who we are meant to become in the years after she passes. The strange gifts of mortality. 
Just take it slow, be easy on yourself, know you have done your best, and allow the mystery of this strange “permission” to go on with your own life to enter your heart. Good days might happen again. Bad days, too. Like weather, let it be what it is, and know that it’s not in your control, you’re not responsible for it, and you do not have to fix it or live up to some heroic task. It’s a hero’s journey to be there in the process, and I love you for it, and pray for you. 
It’s a long goodbye, but the same kind of goodbye we had to say to Daddy. He went quickly, Mom needed a longer journey (perhaps because, as much as she wanted to go be with Daddy, she had a hard time really letting go of us). Soul work is mystery at this stage, and your great gift is being present, even when there is nothing you can give or do any more. You got her into a safe place for this stage of the journey, and are watching over her as best you can. Ellen and I can only be present in prayer and meditation. 
Mom knows you’re there, that we care. She just needs to let go of life (and us) in her own way. In many ways, it’s permission to acknowledge that even when Mom was here in full mind and strength, there were many things we were unable to share with her, many ways we could not reach her, and many ways that only the soul’s relationship to itself will satisfy. 
My older sister wrote in response:
Just wanted to say thanks for the things you wrote yesterday. One thing especially was very helpful to me: the idea that Mom has always been so attached to us, worried for us, that it may be quite difficult to let go of her children. We none of us can deeply understand that.
Then I had an email from Char, who has been through it with her Mom:
You are right, it’s not personal, and you have to keep reminding yourself of that.  Not always easy to do.  Fortunately, you have 67 years of knowing your mom loves you, and that hasn’t changed–she still does, it’s just that she sometimes doesn’t remember that.  You have to remember it for her, I guess.
 
I remember when my mom was going thru this….with her, the big issue was that she couldn’t talk, and that was so frustrating!!  Not just from the standpoint of not being able to hold a conversation, but also from that of just not hearing her voice At All…..Sometimes I would forget what it sounded like.
 
I’m sure you may have heard the story about the elderly man who went to see his wife, in an Alzheimer’s care facility, every day, and someone asking him why he kept going, since she no longer remembered who he was, and his answer was, “but I remember who She is.”
It really helped me to  see the situation from a different perspective – I realized today when I went to see Mom It’s NOT about me.  It’s still very emotional for me and it was hard that Mom really didn’t know who I was again today.  Because she is having trouble eating, I won’t bring her chocolate or cookies any more.  Not sure what to bring her that will be easy for her to eat.  She was very sleepy this morning, so I may try visiting in the afternoon to see if she is a little more with it.
It is truly a matter of dealing with what is in this moment.

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Changing Hats

September 21, 2014

Last week and this upcoming week made me realize how many hats I wear at a given time.  Seems as if this particular period of time brings them all together over a 2 week period.

hatsedwardian

Last Monday was as a new radio host, then a chiropractic client and a blogger.  Tuesday   and Wednesday I was a Promotional Marketing distributor at my Marketing Association Showcase.  Thursday I had a day to myself and  spent time on my business as a Promotional Marketing Advisor and finally a cleaner outer for my Mom’s things.  She was a hooker for over 40 years and now that she is in an adult family home, I found someone on Craig’s List interested in her supplies.  I was listing rug patterns and went through the books she has – this is going to be more of an undertaking than I realized.  Still not sure where some of her things are.

Friday I was a caretaker and daughter, visiting my Mom on a weekly visit.  I am also a longtime friend with Char who came with me on the visit.  After that we went to play and spend time catching up.  Also a wife and semi-nurse to a husband with a bad cold.  Monday I will be a radio show host and chiropractic client again, Wednesday I will be a member, Promotional Marketing Advisor and Kickass Warrior at my networking breakfast group.  Thursday I will be an RA patient for a rheumatologist visit and infusion.

This doesn’t mean I am the only one with many hats, I’ll bet everyone feels that way at one time or another. Sometimes it seems the hats need to be worn all at once or very close to each other; other times it  seems only one or two hats are worn.  In a way it makes me realize I am not just one thing, I am versatile and able to many things – some I never expected to be my role.  They have certainly been an education and have taken me out of my comfort zone.

It can be an emotional roller coaster at times.  Doing my radio show gave me flutterings inside, but I know excitement and fear feeling very much alike – I decided they were happy butterflies and they will probably be with tomorrow morning when I do the show.  Also a feeling of unreality – was I actually at the microphone of a radio station?  I checked the 1150kknw.com and there on the right on the home page was a list of shows.  mine was in there as well and when I clicked the link – there I was!  How amazing is that?

Visiting with Mom can be very difficult – Friday  she was mumbling and sleepy, though she did eat the chocolate and one of the cookies.  Char thought she seemed a bit perkier by the time we left.  Judy said they had eliminated one of her meds and there will be a difference once it is completely out of her system.  As we were leaving, Angela from Providence was arriving to vista Mom.  She is a speech therapist and she had been asked to go vista Mom and assess howe she is doing.  Apparently she was told Mom was having trouble with hot and cold food and choking at times.  I didn’t stay for 2 reasons, one I didn’t want to and second because she is different when I am around.  Angela needed to see her as she usually is.

I had no idea she was coming, so it was a real surprise.  Later she called me to let me know her assessment. Since Mom has some trouble swallowing food – part of the dementia and will get more pronounced as time goes on – and doesn’t drink enough water to keep hydrated, Angela recommended pureed food and the  thick water.  I learned about thicker water in rehab – some people have trouble with liquid water and this is more of a slight gel type.  People seem to have an easier time swallowing it.  She also suggested Judy put a little sweet flavoring to help her drink it – Mom does love sweets.

Just as I feel I ave gotten on an even keel with Mom’s condition, something comes along to rock the boat and make me uncomfortable.  In my mind I know she will get worse, but when it actually happens, it’s like a slap in the face and real.   To think and see my strong, independent Mom not able to take care of herself is a sucker punch to my stomach.  I’m not sure how to handle it, I don’t have any experience fall back on.  It’s very hard to put into words, maybe because I am not sure what I am feeling.  I was so glad Char was there, she went through something similar with her mom.  She understands and I don’t have to explain it to her.  I am so glad we had an outing planned afterwards; if I had been alone, I would have gone back home and brooded about it as well as having a very uncomfortable husband.  Thank you Char for being there for me.

When I was at the Showcase both days, I was in a familiar world; I understood what people were saying and  I was part of it.  I was completely immersed in it – the rest of the world shut out.  I saw people I haven’t seen for a while as well as meeting people I only knew by email or phone.  Also interesting to see the new trends in promo products – so many tech for phones, iPads and computers.  I also saw something that gave me an idea about promoting my show – we’ll see what happens.

I’m putting on my radio show hat today to prepare for tomorrow, I ad libbed last week and it made me nervous.  I also have my wife/editor hat – we got Eddie’s newsletter out and also he is feeling so much better.

It will be interesting to see what this week brings.

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Happy Butterflies!

September 15, 2014

It has come and gone this morning – I did my first radio show at 9:30.  I have been excited, apprehensive, impatient and so many other feelings.  Sometimes it felt as if it would never come and it was coming too fast – all at the same time.  The past three weeks I have been thinking about what I would say, then found myself ad libbing.  I had happy butterflies in my stomach – since fear and excitement feel the same, I chose to have excited, happy butterflies – they kept the downer butterflies from taking over.

I think I understand a bit what people mean when they prefer an audience because you can interact with them.  It was just Benny and me in the studio with a microphone in my face – no idea if there was any reaction.  A strange experience, so I will have to make sure I have notes with me next week.  All the things I had thought about saying were gone.  I talked a bit about my history, mentioned RA and also a bit about Mom and dementia as well as remembering to announce the name of the show, my name and where to find me.  I also remembered to mention twice about becoming a sponsor – that marketing is an investment, not a line item in the budget that can be jettisoned when things are tough .  I also remembered to say you are selfish if you don’t market, how are people who can benefit from what you offer find you?

I also met the three ladies who have the show before me – and now they are talking about ending their show after three years.  Everyone has been so friendly and helpful, I finally met Benny after some emails and hearing him for several years while I’ve listened to the station.  Interesting to say he is my producer.  It all feels a little unreal at the moment.  Mostly I am getting used to it and finding my rhythm.  I may try some phone calls in a week or two and see how that goes.  Then I will add guests – if I am comfortable doing the show, they will be.

After the break I was  trying to figure out what to say – a couple of giraffe moments but otherwise it was fine.  I asked people listening to send me a postcard or card to tell me who they are and where they are from – this station is in about 35 countries.  I haven’t wrapped my head around that one yet.  So it will be interesting to see if anything arrives by next Monday.  I had emails from Erik and talked to Brian, plus Benny sent me an email saying I did a great job – in all caps.

I have been feeling all kinds of emotions since I set this in motion – how amazing to find myself on the radio talking about my life with RA and other things.  Some it is just a feeling of unreality, that it is actually happening.  Because I was a bit nervous and had happy flutters, I sat quietly in the car when I arrived in the building where the studio is.  I sat quietly, took some deep breaths and asked the Universe to  give me what ever was necessary, I would just show up and get out of the way.  It turned out well and I am glad I did that before going upstairs.

I used to do that when I was doing speeches for the Conn. Chapter of the Arthritis Foundation.  I had a list of things I had to cover – basic facts of arthritis – and if time was short, I would jettison my stories.  I never knew who was in the audience and what they need to hear, so giving it to the Universe was the best way to go.  At times people come up to me and thank me or say they learned so much.  I also figured there were a lot of people who never said anything to me but heard what they needed at the time.  I’ve decided I have been doing my purpose in life without realizing it – much more effective that way.

I left the studio and went down to Kent to see Dr. Cheryl for my chiropractic adjustment.  A bit of a letdown – there was not any fanfare doing the show and then  they were on to the next show.  When I finished, I felt tired, so I came home and had a lie down – I must have slept because the next thing I knew, Eddie was home at 4.  It didn’t feel more than a half hour or 45 minutes.

We’ll see how it goes next week – Benny will be away and Taylor will be in the studio.  Lots of information and experience in a short time.

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Dad Continued

September 14, 2014

Today is the 100th anniversary of Clayton Moore’s birthday – otherwise known as The Lone Ranger.  I remember watching it as a kid – I also named my stick horse Scout – Tonto’s horse.  Interesting how things this year have reminded me of my Dad.  I may not write about my Dad in chronological order, sometimes certain things come to mind that may be out-of-order.

I think my first memory was about 3 or 4 years old, in the Manhattan Beach house.  I have vague memories and pictures in my mind of chasing trains.  I remember being at the front closet to get coats and go see trains, where I have no idea.  My older sister Ellen might remember.  I also remember walking on the tracks with my sister and Dad – used to frustrate me no end that I kept slipping off but my sister walked the tracks with no trouble.  From my younger point of view, she always did things better than I did.

Family Feb 1954

February 1954 – I think it was taken at my Dad’s parents house in Palos Verdes

Ellen and I would play stick horses together, a long square stick that we tied thin rope at the top for reins.  At one point, Dad took his jigsaw and cut out heads to put at the top – mine was painted like Tonto’s Scout, can’t remember what Ellen had.  We enjoying playing with them, I know we played in the back yard but whether we went in the street I don’t remember.  Again, just pictures in my mind.  When Dad decided to accept a job with Boeing, we moved from Southern California to Seattle – for some reason Dad said we couldn’t take our stick horses – no room in the moving van, or something like that.  That made no sense to either of us, so we weren’t too happy about that.

Family on Drive

Back yard of Manhattan Beach house – to the right is the yard, to the left up the drive, a 2 car garage.

I was 7 when we moved about April of 1954, Ellen was 11.  My parents found a house to rent in Madrona and things suddenly changed.  I was in 2nd grade – turns out I went to school a year earlier than the other kids, so I was always a year younger during public school.  (Mom and Dad always told the story of how much fuss I made to get on the bus with Ellen, so they let me go at age 5 – turned out not to be a favor after all.)  I finished the last 2 months of 2nd grade and then went into 3rd grade.  I think Ellen was in 6th grade by then.

I remember one day in 1954, my Dad came home for lunch – very unusual for him.  Then he and Mom stood out on the back porch watching a plane fly by – what was the big deal about a plane?  It really was a big deal because it was the first flight of the 707 and beginning of the jet age.  It was many years later that I knew why it was a big deal.

When we moved to Seattle my sister Candy was about 18 months old and to us, a pest.  Certainly not her fault, but there was 6 years between us and 10 years between Candy and Ellen.  I also noticed Ellen wasn’t my playmate any more, by that time the 4 years difference was very noticeable.  I was on my own a lot, seems to have been my history.  She kept to herself more and I was probably a pest and nuisance by then.

A year and a half later, my parents found this house – it had all the requirements – a large lot, a view, 4 bedrooms; I never thought I would be living here since 2002 and it is now mine.  I now understand why my Mom wasn’t happy with the layout of the house, you have to go through the living room to get anywhere.  The front door opens smack dab into the living room – wonder if that is why everyone goes to the back door, or is it the path leads to the back porch?  Unfortunately she couldn’t explain it to Dad in a way he would understand.

At Christmas time we would go down to Chubby and Tubby for our Christmas tree.  The five of us would look around the lot and each found a tree – then we had to decide which one to buy.  It often seemed to me that the best tree was always the one someone else was holding.  We would choose one (sometimes one that needed the most love),  take it home and put it in a bucket of water at the bottom of the outside stairs.  It was usually a week before Christmas.  Then we put it up on Christmas Eve, decorate it with ornaments Mom and Dad had collected when they were first married, new ones and ones we made.  The cool thing was the next morning was Christmas.

One Christmas we put it up a week before Christmas, didn’t work out all that well.  Instead of Christmas coming the next morning, it seemed forever for it to come and I think we all  were a bit tired of the tree when it finally came.  So we went back to putting it up Christmas Eve and taking it down New Year’s Day.

I’m curious to know what my sisters’ memories are, if they are very different.  Funny how each person sees something, a person, or event at the same time and sees it differently.  I have been going through pictures and these two were ones I found.

Once again, to be continued.

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A Mom Day

August 20, 2014

I would have written this yesterday afternoon but I was exhausted.  I had gone to visit Mom on Monday for a regular visit – she was rather sleepy and only ate the chocolate.  Elaine said she had made french toast for breakfast and I suspect that was shortly before I came.  I read and finished the book, putting her to sleep.  She was all that alert, so I didn’t stay long.  I left the cookies for an afternoon snack later.

Yesterday I had made an appointment for Mom to have her haircut at the Center.  I will admit I was not sure how much she would fight it.  I went to the Center and there was Mom, fast asleep in the wheelchair.  I took her down and she slept through it all.  Lisa cut her hair first, then shampooed it and blew it dry.  Lisa figured Mom would wake up once she started shampooing, but she didn’t.  I held Mom’s head up a bit to make sure the water wouldn’t run down her face.  Her hair looked so much better when Lisa was done, it had gotten so long.  She is now on a 6 week rotation to have her hair cut, I want to make sure it is done on a regular schedule.

By the time she was finished, it was noon and time for lunch.  It also turned out she had a check up with the doctor that day as well – how do I manage schedule a haircut the day she is to see the doc?  Anyway, I had some time on my own until the doctor.  So I went down to the small gift shop to wander around, then went to the car for my book.  There is a small cafe just down the hall, I had half a sandwich and a bottle of lemonade – boy, was I thirsty!  I read and while I had lunch and was able to regroup for the doctor’s visit.

I went up about 1:15, Mom had woken up and was awake long enough to eat a good lunch.  Then she was back asleep in the examine chair.  They also noticed she tends to list to the left, something they really hadn’t seen before – she does that in the chair when I go to see her.  She got very feisty with them when the doc and the nurse were examine her.  She was mostly asleep, but fought with them when they were checking to be sure her skin is in good condition, all around her abdomen, checked the lump, didn’t do too well looking in her eyes.  There was one point when she fought and said “Stop it, God Damn it!.  Not what one expects Mom to say.  Definitely the dementia doing its thing.

It was so hard to see her in that situation and how strong she still is – the doc and nurse were being as gentle as they could but it looked worse than it was.  It was upsetting and at times as I was answering questions, I found myself getting weepy as I told them what they wanted to know.  I said I notice now she mumbles more, not distinct words that rhyme that she repeats.  The lump has not become any smaller, nor will it; so she said they want to just keep an eye on it so it doesn’t get any bigger.  On the whole, they are pleased she is doing as well as she is.

When I had first come in, I saw Denise, the social worker who helped me so much.  A few months ago she asked if it would be all right to have a woman who used to work Traveler’s Aid come visit Mom.  I said “Of course!”.  Last week Jane came by to visit Mom and she talked to Mom about the orphan meets and Mom lighted up and actually spoke the words Airport, Babies and happy.  She smiled and was holding a stuffed animal, so was Jane – they showed each other their baby.  It was a small slice of a happy time.  I am  pleased it worked out so well.

The past three days have been  a lot of ups and downs, the downs have been mostly with Mom and I found myself out of sorts and cranky when I woke up this morning. Part of it was from a dream about Eddie, he had moved everything around in the kitchen, we had guests and I had no idea what house we were in or where anything was.  I couldn’t fix anything to eat for people, had no idea who they were and sometimes I think I had very few clothes on.  So it has been a weird day.

We have a new tax  man and we have seen him every Wednesday for the past 3 weeks.  We went in to meet him and the following week brought all our tax stuff for the past 3 years.  We figured the next time would be when we came to do the taxes – no such luck.  The IRS and Social Security sent us another letter about the 2 months when we hired Kathy while I was in rehab.  We have paid the money but somewhere it hasn’t come together, but he found the problem and had it put together in half an hour – ready to send off.  let’s hope it is the end of it.

this whole Mom situation has been a really education and learning experience – I wonder if I am expecting myself to do it perfectly.  The doc thinks I am doing a really good job, the caregivers think so – I have gotten a lot of positive comments.  I’m doing the best I can and that is as perfect as it will ever be.

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Plates Spinning

August 17, 2014

At times I feel as if I have several plates spinning on sticks – similar to the  people Ed Sullivan used to have on his program.  Some days I feel like this:

Plate-Spinner

Everything is nicely balanced and I am in as much control as I can be.  Then there are days like today and the past week, I haven’t felt much control and there doesn’t seem to be enough time to keep them all spinning properly:

plates

I could give a name to each plate – cleaning out Mom & Dad’s stuff, my new website for my business, a new website for my radio show, understanding how the sponsoring works and finding sponsors, doing Eddie’s new report (he isn’t doing the Round Up but calling it The Kaplanian Report, not associated with the Future of Flight), things for Mom, personal business stuff, Apple Group Training and also One to One,my blog, my book, Kaplanian International stuff, etc.

This week I have been  doing a lot of clearing out bureau drawers – the stuff my parents kept!  All kinds of cards they received and Mom had so many cards ready to send for almost any occasion, I am going to give them to the Goodwill so other people can use them.  I have bags of papers to put in recycle – our wheelie bin is full to the top and I have 2 other bags ready – plus things I have put away in boxes to see if my sister Candy wants them.  I found 2 photographs from North American Aircraft in an original envelope that is going to the Boeing Archives, lovely to know they will be pleased to have them.

My parents kept things even though they were worn out, some things had never been used and there is a beautiful  grey wool yard length – very fragrant with moth balls.   And letters from people, from Mom & Dad to his parents, letters from both his sisters and letters from his Uncle James to Dad’s father.  I had a hard time reading the hand writing, I am putting them away to read later since I need to work on the clearing out.

Along with that, I was having a lot of discomfort – the toilet and I became close companions on thursday, Friday and even into Saturday, though not as much.  The tummy was unhappy and I was really tired.  Yesterday after we did all our stuff, I came home and crawled into bed with Bunny to sleep some of it off – and I was better when I woke up.  Not sure what happened because I didn’t eat anything  different.  I have been very careful how much I eat, the tummy gets uncomfortable.  I have been using water and baking soda which seems to help.  maybe the side effects of veggies.

We finally had rain this week, blessed soaking rain.  I have been feeling very dry and parched and it was so lovely to hear the raining really coming down as I was lying in bed.  Rain is so refreshing and makes things feel washed clean.  Now it will be 81 today and 83 tomorrow, then back to the 70’s – that’s quite okay with me.

I have been playing phone tag to arrange a haircut for Mom, finally made it for Tuesday.  Her hair is getting long and needs cutting – not sure how she will be when the time comes.  She is very feisty when anyone wants to do anything for her – I make sure I am there for the hair cut and sit beside her.  There is no way to tell how she will be from one minute to the next, one day to the next.  I saw her on Friday and she was rather sleepy, though chocolate sounded very good to her.  She was cuddling a stuffed dog or cat and Judy had put a chair on each side of her, she could easy fall to the side.  She seems to mumble more than before.   I don’t know how much she knows that Fern died last week.  Fern was 102 and having a lot of pain in her body, as well as feeling alone since she was used to family all around.

I’ve been wondering if  visiting Mom and clearing out things has had an emotional and mental effect as well as physical.  It maybe stirring up a lot of old programs, messages and memories that I had not been conscious of for quite awhile.  The bottom drawer of the desk is definitely a proud parent’s drawer; all the drawings and things the three of us girls have done since we were very young are there.

I saw Mom on Monday and then went to my Caregiver’s Support Group.  I’m so glad I did, it helps so much.  I told them what was going on with Mom and that I feel as if I am walking in thigh deep water.  It feels more than just fatigue, but there is more to it – I can’t really name it at the moment.  I also realize each time I go that I have it relatively easy compared to the others.  They have to deal with so much more, how they cope I can only imagine.  I will admit, I have periods of feeling I have such a difficult time – usually when I am tired and worn down.  I haven’t figured out how to actually become rested while still doing what I need to do.  Is that what’s called the horns of a dilemma?

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Life Lesson

July 4, 2014

It’s the 4th of July today – we knew it was coming because there have been firecrackers going off for a week.  Strangely enough, it’s quiet at the moment – 2:15 p.m. – but I expect it will get livelier as the day goes on and it begins to be dark.  So we are in for a noisy evening and night.  We can look in all four directions and people have fireworks going off – sometimes it is hard to decide which way to turn.  The other unusual part of the day is that we have had sun and good weather quite often – we tend to say summer doesn’t start here until July 5th.

Eddie took the day off and went with me to visit Mom.  I wasn’t sure if he would because he finds it very difficult to be with her, he can’t really carry on a conversation with her.  She has been having trouble with her knee, so she has been in the wheelchair – but Judy has her use the walker to go into the tv room.  Today she was sitting in the chair, her walker near her.  So she must be doing better.  She is always ready for chocolate and cookies, I had 2 different kinds of chocolate this time.  As we were walking over from the church parking lot, Eddie said he didn’t want to stay very long.

We were there about half an hour and Judy was outside on the phone, so I couldn’t tell her we were leaving.  I went around the back door but she wasn’t outside, she was just inside the door.  She was concerned about me because we hadn’t stayed long – I told her it is hard for Eddie to see her that way.  She is so understanding and kind to me, it started my tears gathering in my eyes.  And the nicer she is to me, the more I cry.  It hit me and I was feeling upset.  I went back to the car and decided I would just feel the feeling, feel the sensations.

I can’t really describe how I was feeling,  upset is the best I can do.  So I just decided this is what I am feeling in this moment, not judging it good or bad, or criticizing or beating myself up about it.  I decided to speak my truth, though mostly it was inside me rather than telling Eddie.  It was uncomfortable to feel like that, but that was how I felt.  I felt tears spilling down my cheeks and I let them fall.  I thought about the gift in it, at that moment I didn’t see any gift.  I called on Mother/Father God, my angels, archangels, master teachers, ascended masters, spirit guides, over lighting divas and all who were there for my highest good to help and guide me to see the gift.

As I was working through it, I realized the gift was I felt my feelings and the sensations without judgment or beating myself up – just allowed them to be what they were in that moment.  Usually I will do something or go somewhere so I don’t have to feel or think about what I am feeling – not always the best idea.  It feels as if it is another step to awareness – they aren’t always comfortable or enjoyable steps, but they are necessary.

I told Judy I have had several people tell me that I will be grateful I did this for Mom – she said that was so very true.  Right now it is a bit difficult for me to see this because often I want to run away and not have to deal with it.  I also know I couldn’t live with myself if I did – I keep thinking how she has always been there for me and my sisters and it is my turn to do it for her.  I never want her to feel she has been abandoned.  I spoke to an intuitive a few weeks back and she told me my Dad’s Spirit is still here, waiting until Mom finishes what she needs to complete.  She said he is very proud of me.

It’s better now, though there is a heaviness and some draggy feelings.  The gift comes in unexpected ways, or is itself different from what I thought it would be.  Sometimes I expect things to show up in a certain way or form, when it doesn’t, I am disappointed.  I have a much easier time now just giving it to God and saying “However shows up, whatever works for me”.  I have finally learned that when I  say it has to be a certain way, I limit the Universe and miss out on all kinds of possibilities.

I also have some things to resolve with Mom, I plan to have a reading with the intuitive to see what is left unfinished.

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I Am Blown Away!!!

June 29, 2014

This is my 257th blog post – with 4 drafts – and what is more amazing are the 102 followers I now have.  That is so amazing!  I was so pleased with 25 followers and now it is 4 times that amount.   I am very grateful for all of my followers, I appreciate the comments and to know there are people who are interested in my blog.

On the slight downside, I was getting a lot more spam, but I know they just want me to approve their comment so it will show up in better stats for them.  It all gets deleted, so they have wasted all that time and energy for nothing.  Recently it has slowed down to only a few at a time – I am not interested in house appraisals and inspections in Maryland, any more than all the ones from people selling cars.  Give me a break!  I don’t write anything about any of those.

As I look back over all the posts since February 2010, I started out with mostly writing about RA; then wrote at times about Ike Pono and what I was learning about myself.  Later on I wrote about my Mom and dealing with dementia and about some things going on that have nothing to do with any of the other things.   Yet, all of it affects RA and my state of mind; how can it not?  I also have learned that it is important to find the funny side of things – if I don’t laugh about it, I go nuts.

I started thinking about all the years I have had RA, all the drugs, tests, studies, procedures I have had.  When I am in the situation, odd thoughts come to me that are a bit funny.  It isn’t as though I sat there and said to myself “What’s funny here? or what does this remind me of in the past?”.   Things just came to me.  The times I have been in the hospital, I would keep a pad with me to write down my experiences.  I wrote a journal for several years and I had requests to be put on my list to send it to them.  I realized that writing helps clear things out, help me see things a bit more clearly and there is something that compels me to write things down.

Before I came back to Seattle to live, I traveled a lot with my husband and also by myself.  I would keep my journal going and at one point, I started recording it on a cassette tape.  I found someone to type those tapes out for me – when I read the typed piece, I realized I had left out things.  I may have been a little more conscious of editing because I knew someone else would see it.  People used to tell me I had such an interesting life – reading my journals didn’t have the times of pain, depression, frustration, etc. I had at the time.  I didn’t whinge because I was tired enough of it myself, I didn’t want to write about it.  Besides, who wants to read that?

When I started this blog, one thing that was important to me was not to whinge (moan and complain) because I wanted this to be a positive blog.  I’ve read other RA blogs and they tend to talk more about how they are feeling, what isn’t working, what is – I wanted to have more ideas and solutions.  I know this kind of blogs work for some and I am glad they do.  It’s just me.  I started with the Connecticut Chapter of the Arthritis Foundation doing a support group.  When I was having problems, it was good to have other people understand.  But it felt too focused on me and how I felt, I wanted to do more with people and turn outward than continually inward.

I was asked to be the Speaker’s Bureau Coordinator and later a Self Help Course  instructor and trainer.  I really enjoyed those because I interacted with people, found confidence in speaking before people and seeing something positive happening.  I usually talked about the basic fact of Arthritis – like all things, it was personal rather than just cut and dried facts.  When there wasn’t a lot of time, my stories were the first to go.  I received so much positive feedback and it made me feel so good when someone told me I had helped them so much.  I had felt things were just negative about having RA, here was such an opposite view that surprised and pleased me.

It has not only been with the Arthritis Foundation this has happened.  I have had several people tell me I am their hero.  WOW!  I was and am just being me, yet something spoke to them.  I often wonder how many  I have helped and will never know about it – but I have decided it doesn’t matter, I’m not supposed to know.  I think we all inspire people as we go along our daily life without knowing it.  To me, that is when we are most effective.  I used to think if somebody didn’t mention it, no one noticed what was happening.  But I would remember how many times I noticed something but didn’t say anything to the person.

So, to all my followers, you are the best and I truly appreciate each and every one of you.

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A Less Than Stellar Move

May 18, 2014

I was really looking forward to Saturday and sharing the day with my friend Char and her husband – it is their 40th wedding anniversary and they were renewing their vows.  I was all ready to go, had the invitation to get a map to show me where to go and I set off.  However, I forgot my phone charging on the bureau.  I was driving up and I was surprised at the traffic, it isn’t usually that much on a Saturday and I managed to be behind every slow driver on the road.  I was concerned about being late, but when I thought about calling to let her know I was running late – that’s when I remembered I didn’t have my phone.

So I figured I would get there when I got there, not a lot I could do about it at that moment.  So I followed the map directions and when I got to the end – no church.  I looked at the map and all the streets matched, but no church, just housing developments.  That upset me because I didn’t know what to do.  I did see a woman walking her dog, so I asked her  but she had no idea.  She offered to lend me her phone, unfortunately she couldn’t get it to work.  Now what?

I drove around a bit looking for another 13th St. W but didn’t find one – I was upset at being late and now it looked as though I wasn’t going to get there at all.  I was really upset at disappointing char and not celebrating a special day with her.  I couldn’t think of anything else to do but head home.  I had no idea what happened, though I figured it was my bad – I had missed something somewhere.

I was on the freeway and needed to find a pit stop, so I went to the rest stop to heed She Who Must Be Obeyed.  I came back to the car and was looking at my map to see if I could see where I goofed.  As I picked up the invitation, it hit me in the face – plain as the nose on my face!   I had put in Everett on the map finder out of habit – I seem to associate Char with Everett because when we were in high school, her parents moved up there.  So I had the address right, but it was Lynnwood, not Everett.  What an idiot!  So I drove home because I had no idea where it was in Lynnwood

I started beating myself up and caught myself – that wasn’t getting me anywhere.   I’ve grown enough to know that has been my usual pattern and if I had stayed true to form, I would be a mess by the time I came home.  Then I began to think in terms of a reason for it  working out this way – I had no clue but maybe it would show itself at some point.  Maybe I was in too much of a hurry and worried that I wouldn’t be there in time.  Whatever the reason, it was a small miscalculation that put the spanner in the works.  One of those times I wish I could go back in time to correct what I put in the computer.

When I got home and saw Eddie, I started crying , not sure why it didn’t happen when I was driving.  I called Char the minute I came home and left a message for her to let her know why I didn’t show up.  Eddie was glad to see me, he thought I would have later.   He had just gotten home himself, so I enjoyed  grilled turkey burgers with him and folded the laundry.

Char called when she got home and had heard my message.  She had been concerned something had happened with Mom, Eddie or me and so her mind was at rest on that front.  she was just glad everything was okay.  She had a great time and there were about 50 people – I’m delighted she had fun and although there were clouds and sun, no rain fell.  I will be able to enjoy it in pictures later.

I am working on understanding why I feel compelled to write about this – in the scheme of things, it’s barely a ripple.  It is the same feeling I had when I began to write the blog in the first place; something compelled me to write about RA and my journey.  I felt that if someone could benefit from it, then I had accomplished my objective – to be of use and help others.  This has the same feeling, but no obvious purpose as I had in the RA parts.  That one is going to have to simmer on the back burner for a while and see what emerges.  Sometimes that works the best for me when I need to understand what is happening.  There are sudden “Aha” times and I will finally “get it”.

I’ll keep you posted.

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