Posts Tagged ‘Char’

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.

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.

No Pictures, Just Me

June 15, 2014

I’m not sure what to call this post, seems mostly a round-up of what I have been doing this last week.  It turned out to be a busy week and at the end of each day I was beat.  Monday I went to see my chiropractor in the morning – I had been carrying rocks again Friday.  Fortunately there were very many consequences but it was god to have an adjustment nonetheless.  Then I had an Apple appointment at noon to work on my book in iBooks Author.  It has driven me crazy because I can’t figure out some of it – such as how to put my Pages copy into the format and have it work properly.  The bottom line, I have to do more copy and paste.

Even Katie, the tech, was having trouble getting it to work; I didn’t feel like so clueless after that.  Apparently the app hasn’t been updated for 2 years and I am not the only one having trouble getting it to work properly.  I will have to write to Apple feedback and tell them what is happening.  Apparently they do read it and Shawn has noticed they made changes she has written about.

After that was my caregivers support group.  I didn’t have much time to get there, so I stopped at Mrs. Field’s for a brownie, not the smartest choice, just the fastest.  When Eddie asked me later what I had for lunch, I said not the best choice, a brownie.  Then he asked me if I ate it because I was upset – an unexpected question he has never asked before.  I told him I had very little time and it was the quickest thing I could think to do.

We had a large group at the support meeting, some for the first time.  One of the advantages of having been there for a while, I am more calm when talking about Mom than I have been.  there are still times when I need support and I am so glad to have these friends there for me.  I have also been able share my experiences and resources to others who are beginning the journey.  That feels good to be able to do that – I don’t know the outcome usually, but it is not always necessary.

Tuesday I didn’t visit with Mom because I went up north with Eddie for the day.  Tuesday was the day we decided for my Queen’s Birthday.  We stopped for breakfast and I spent some time in “my office” – otherwise known as the balcony – reading until I was ready to leave.  Things are different at the Future of Flight since the coming of the new Exec Director, so I wanted make sure did what worked for Eddie.  I left and spent time in Hobby Lobby and also Pacific Fabrics before meeting the other women at the restaurant.  It felt good to sit down.

I was about half an hour early, so I found a spot and read until I saw Joyce come.  We went in together and sat at a table waiting for Char and Lois.  They came fairly soon after that and we had a lovely time.   Char brought me a chocolate bar with a card and Joyce brought a card.  We have been just doing cards lately – at this point there seem to be a lot of funny cards about older women.  Yikes!  That’s me now!

Afterwards, Char and I went to Half Priced Books to look around, then it was time for me to meet Eddie.  I told him I would wait for him in the car until he was ready – seemed to work out well.   We left at about 3, but it was 6 before we finally arrived home.  There had been an accident in the tunnel and the Viaduct was closed – you can imagine what that did to traffic.  We took I-5 to 85th and then went over to 99 – but the traffic was backed up quite a way.  Everyone was trying to find a way around the tunnel and the Viaduct – not all that easy.  We decided to go through town, just as everyone else did.  We were on 5th and suddenly the Monorail went right overhead, never been under it like that before.  It happened several times so that shows how slow we were inching our way.

Finally we found the traffic opening up a bit, so we decided to go down Airport Way – that was so much better – it was good most of the way home.  We were beat and had a light dinner – I slept so well that night that I didn’t want to get up at 5 the next morning.  But it was Breakfast Club morning and I enjoy going there.  The last 3 or 4 weeks, Eddie has been going later because the historian Mike has been away – had a knee replacement.  He is planning to come back next Wednesday.

I always enjoy being with the group, they are such good friends and colleagues.  We do have fun but we are also serious and professional about our businesses.

Afterwards I went to visit Mom, bringing cookies and chocolate.  Lately I read to her, I was finishing up one of the “The Cat Who . . . . ?” books; I brought another one on Friday to begin.  I came home shortly before Eddie did, then we went out to do some things in the afternoon.  I felt myself almost falling asleep in my chair those 3 days.

Thursday I went to the Group Training for Pages because I have been having difficulty with Eddie Round Up – the type goes small on him and he gets very frustrated with it.  I found out I need to do some adjustments before I can make it a template, then it should work properly.  I don’t think Eddie is ready for new Pages yet.  Afterwards I came home and found myself working on the book.  I had energy and enthusiasm, plus I figured out how to copy the Pages version – unfortunately only one entry at a time – so it fit in the format.  Now I need to figure out how to get the Table of Contents to behave.

While I had been at Apple, Paul and Jude cleared the house and property for me – I have to admit I didn’t feel anything different when I came home.  Wonder if the burst of energy and enthusiasm was part of it.  But that night I felt uncomfortable – no where particular, just a general uncomfortable.  I didn’t sleep very well  that night and woke up feeling crappy.  Things are better now, maybe it is going to take some time to settle down and clear out.

That’s my story and I am sticking to it.

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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