Posts Tagged ‘dementia’

Her Journey’s End

October 9, 2014

Yesterday morning at 4:50 my Mom died peacefully in her sleep.  She had her 96th birthday last month and she finally was ready to let go and make her transition.  We had a call shortly after from Judy, her caregiver to tell us Mom had died.  It was part expected and in part startled me.  Since the doctor had said she was going into the last stages of dementia, I didn’t know how long she would be with us.  It is a relief and also upsetting; even though I knew Mom didn’t want to be here, that she missed my Dad and her cat Josephine.  Judy asked if I wanted to see her body, but I said No; I wanted to remember her the way she was when I saw her Friday – fast asleep under the covers, looking warm and comfortable and holding the weighted baby doll.

I am not sure what I am feeling or what I need or want – I feel at sixes and sevens, sort of wandering around wondering what I am supposed to do.  I called my sisters to let them know, I spoke to Ellen and had to leave a message for Candy because she wasn’t available.  Eddie had a conference he was helping put on and there was no need for him to stay home.  I think it helped him concentrate on that rather than Mom.  I went to my Breakfast Networking Group – Julia asked why I was there.  I didn’t want to be at home.  I’m so glad I went, this group of people have been there to support, encourage and help me through some difficult times – they are close friends rather than just people with businesses I network with every Wednesday.

I am still alternately calm and teary/drippy, never sure when the drippy will appear.

LATER

I’m having trouble settling to anything – I quit writing this because I couldn’t  keep going – usually I go into a flow once I start writing.  I’ve been wondering if writing it out would help – not really sure any more.  I tried having a lie down, to possibly sleep; didn’t happen.  I know I am tired – probably exhausted, but sleeping is not working out very well.  It took me a while to get to sleep last night – then I noticed how stiff and uncomfortable I was.  Not sure what is going on.

Back to the story:

After Breakfast Club I went to see Judy.  She told me Mom was very different on Tuesday, she noticed changes that weren’t there before – she recognized it probably wouldn’t be too long.  She checked on Mom quite often that night and then Mom was gone.  She reassured me that I had done everything I could for Mom and that she feels the loss as well.  She loved my Mom, as she loves all the residents as long as they are there.  It is difficult for her to see them go.  I have tried to tell Judy as often as I can how much I appreciate her, all that she did for Mom and to thank her.  She told me many times that it made such a difference for her to be appreciated – I don’t think too many do that.  She said Mom was a darling and everyone in the house loved her.

I keep meaning to tell Ellen the lilies she sent for Mom’s birthday are still beautiful – they are on the dining room table for everyone to enjoy.  Some have lost their petals, but quite a few are blooming.

I came home  and found a voicemail from Candy – I’m sorry I wasn’t able actually talk to her.  I called the Allens and also John and Luzma to tell them.  I ended up checking my emails and then had a cup of tea and a pear for lunch.  I suddenly felt very sleepy, so I went to lie down for a bit – I think I slept but then the tea kicked in and She Who Must Be Obeyed let me know I needed to get up and use the bathroom.  I went down again for a bit, then Luzma came by.  John had told her when she woke up.  We hugged each other and we sat and talked for a while – she will definitely miss Mom.  She remembers how kind Dad was to her, accepting her and treating her well.  She loved Mom, she said she was like a grandmother to her.  Their shared their gardens and many other things.

I decided I needed to do something, so I worked on the expenses for the business, I have let it go for too long.  it seemed to be the only things I could concentrate on.  Suddenly John and Luzma reappeared, carrying flowers.  She said she knew Mom loved her rose and she thought the house should be filled with roses.  There is one vase is small roses in a deep pink, one vase with red roses and a third vase with apricot roses.  The last vase had white daisies – plus a balloon.  In each vase is a lovely butterfly.  (I’ll put the pictures in another post).

They told me to call them for whatever I need – as soon as I know, I will.  While they were here Eddie called, he was on his way home from the conference, it didn’t last as long as he thought.  I was glad to see him when he came home.  We just had tea and bread – it was later than we usually eat and we were both tired.

I left a message for June, one of the domino ladies and also called and talked to Kathy.  I know there are people to tell but I can’t quite think of them at the moment.  That was Day 1.

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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 . . . . . . . . . . .

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.

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.

Bits And Bobs

July 6, 2014

brain-gear-2

This is one of those times when I want to write but haven’t an idea what to write about.  Usually something has happened, I have learned or discovered something, someone said or did something  unusual – none of it comes to mind.  I ave noticed the moles are back – they have been digging in the bed by the porch and I can see the holes, not just a pile of dirt.  They are busy little bodies, that’s for sure.

I have been working on my RA book; I think I have a better handle on the program now.  I decided to use my sister Ellen’s ocean pictures for the cover and also the chapter headings – looks pretty good.  When I feel I have the hang of the program, I will work on the book about dementia – both Ellen and Candy have flower photos and I think those will fit Mom because she loved gardening.  As for my garden, well that’s another story.  Nothing else has been done since I messed up my knee – I don’t think it is the best thing to do at the moment.  I did receive the flower seed mats and I have decided to use quilt block patterns to set them out – maybe with white stones to outline them.  I need to cut them in squares and diamonds ready to be put down.

As for the knee from my slide; I am doing better, I just started my third week of it.  I have been seeing Cheryl, my chiropractor and she has helped; mostly it is resting and taking care of myself.  I don’t do a lot in a day, just what I need to do and I have been having naps at times.  I’ve been using my cane when I go out, around the house I do okay.  It was hard to bend my knee to walk and now it is slowly getting better.  I think of the things I need and want to do, then I feel too tired to do anything about it.  I keep forgetting it takes a lot of energy to deal with it and rest is so important.  This too will pass – it always does.

I look around the office and keep thinking how much I need to clean out and organize.  There are things I no longer need and when I take the clutter out of my mind and home, there will be room for new things and ideas.  I am a pack rat, though getting less so – it’s the sentimental streak that gets me.  That is how I feel about the things someone gave me, or I used to use, etc.  Too much emotion invested in things.  One thing I have been learning through Mom and dementia is to take the emotion out of it.  Taking it personally is also part of it.  Now I am working on taking the emotion out of things – I have pictures and they  have been part of my life since I can remember.  But I am living my life, not my parents’ life – I want to have my own things around me.  Not sure I remember what I have any more, 12 years is a long time.

It is our life now – Eddie’s and mine.  I guess I feel a bit disloyal selling or giving away Mom and Dad’s things.  But it is also disloyal to Eddie to not have our things upstairs.  I feel caught in the middle a bit, I want to move on with our life together.  I think I am finally at that point I am ready to let go for myself.  The advice to people is to wait a year before making any major decisions – it is almost 2 years since Mom moved to the adult family home.  She won’t be coming home or need anything now, she isn’t really aware of anything outside where she lives.  (I think I am actually writing this to myself).

This is probably the first July 4th in quite a while that we have had sun for several days.  We tend to joke that summer doesn’t start until July 5th, this is one summer that seems to be more “normal” (if you can define that).  The sun and clouds have been playing hide go seek with each other, sometimes it is a hazy sun – not my favorite.  We actually had almost 90 on Tuesday – much to warms for me.  since I found out we have a furnace fan, I turn that on to help cool things off upstairs and bring some warmth and dryness to the basement.  It works pretty well, so Eddie and I were comfortable sleeping that night.  If it is going to be partly cloudy, then make it clear blue sky, bright sun and white puffy clouds.  I don’t mind the clouds covering the sun for a bit – it has a lighter feel,  hazy sunshine reminds me too much of L.A. and smog or East Coast with hazy, hot and humid.  I think go it as the difference between having a bad headache and feeling great.

This seems to be a bit of a mind dump – just things running through my head.  It would be a whole lot longer if I wrote about everything whirling around up there.

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.

Visiting With Mom

March 9, 2014

I have been visiting Mom rather than visiting with her – I just noticed the difference this week.  I have had trouble dealing with not understanding what she says and curbing my urge to ask what she means or to repeat it.  My close friend Char told me recently she had visited her Mom and didn’t understand a word she said.  So she asked her Mom “Does that make sense to you?”  Her Mom’s answer was “No”.  I thought I would try it with Mom, though Mom’s answer was “Yes, it makes sense”.  Mom is operating under a different form.  What is interesting is that although the words are gibberish to me, Mom says it in a very conversational way – she knows what she is saying, I am the one who doesn’t understand.

GetAttachment.aspxMom with Candy at her book signing.  She is very proud of Candy.

Two things she definitely understands are chocolate and cookies.  I bring some with me every time I visit and she is delighted to have them.  I have learned not to ask her if she enjoyed the chocolate or cookies after she has eaten them because she doesn’t remember she ate them.  I have been nervous about what to say to Mom, but I am finding it a bit easier now because I realize I don’t have to know exactly what she is saying.

I have been reading Candy’s new book to Mom recently, first time I have read it as well.  I know Judy has told me Mom takes in things she hears and I am noticing that reading this book.  Friday she made several comments as I read and  at one point talked for a bit – not sure what she said,  just asked “Is that so?’ and Mom agreed.  So it wasn’t necessary to know what she said, just to acknowledge and validate it.  I can sometimes tell when she  thinks something isn’t a good thing, mostly my her tone and sometimes a “shouldn’t or no that’s not good” comes across.

Last Tuesday I took my iPad to play some of the songs she likes – except it once again gave me fits.  Some days it works well and other days it looks so different and I am not quite sure what to do.  I have begun to make a playlist for her so I will have the songs she likes, though I haven’t done too well with Bing Crosby so far.  What will play on my desktop isn’t always available on the iPad.  Now I have to figure out how to start the playlist.

It’s an interesting process and I think I am more comfortable now – there are times when I feel at a loss, but  I am doing my best.  I haven’t told her about Barrie dying, don’t think it will really register and there isn’t anything she can do about it.  I also haven’t said anything about our next door neighbor, he is having difficulty and two of the sons are there right now.  We had gone to bed Wednesday night and I heard this thrum and flash of lights – the fire truck was there and I saw a fireman in their kitchen.  Shortly after an ambulance came in, so I figured it was bad enough to take him to the hospital.  He was back home the next morning bit they may have to have someone there for a while.  I’m sure Mom would be worried if she knew.

I will admit I still have days when I don’t want to go visit Mom, so I make sure I have somewhere to go and do something entirely different after the visit.  Plus, I don’t want Mom to feel she has been abandoned.  When I come and she is very sleepy or having a nap because she had a bad night, I am almost glad we won’t have a visit.  I think she is more aware of things than I realize, but I couldn’t say in what way.  I think she still knows who I am at times, I am better at not taking it personally because it is part of dementia.  Some of what is happening has to do with getting older, some from dementia – I am so grateful to Judy for helping me understand what’s happening with the things I don’t quite understand.

It has been quite a learning experience for me and for Mom – I may never know how it is for her, but as a daughter and a woman, I have learned a lot over the past 2 or 3 years.   I have learned about myself, my Mom and dementia – strangely, there have been gifts in it I am still understanding.

I also wonder who will be there for me if I am in this position.

Unseen Journey

February 27, 2014

I keep wondering why Mom is still here when she wants to leave and go home – she misses my Dad and Josephine, her cat.  She seems more in another world than here in this life.  I have wondered what her purpose and contract is for this particular lifetime and I think I may now have a partial answer.  At least it makes sense to me, though it is her purpose and life rather than mine.   My sister Candy wrote this and it helps me see it from a different perspective.

I am so surprised that Mom has lived so long since Daddy’s passing, yet I have come to realize that she got to see so much of my own career changes, plus helping me through financially turbulent times, by staying. Now that I have business partners, it feels like I have finally landed in a safe place, and all the creative works that were in jeopardy in the financial crash have been rescued so that we can grow and prosper in this new publishing paradigm. Mom would have liked that; to know her faith in me was not misplaced. 
 
Of course, all Mom really wanted was for all of us to be happy, and even though we cannot guarantee that, we can choose to love each other the best we can, believe in each other and in ourselves, and also cherish our own private journeys, making choices that only God/Spirit/OverSoul will see. Perhaps Mom needed these years without Daddy to claim her own private soul journey. Who knows? It’s all part of the great Mystery, isn’t it? 
 
I do know one thing in my heart, though there is no “proof” that will convince any skeptic. That our souls keep growing and that this life is only one stage of a longer and larger journey. Even now, though Mom seems to be sinking into another world, this time is not “useless” but may be an incredibly important unseen work that will bear fruit only on the other side. 
 
I am more and more convinced that we must live our lives well and do the best we can, but then to let go of the results and to not judge. We don’t know what seemingly “unimportant” choice in our lives can have an effect that will reverberate in ways we cannot see. Who knows what is being accomplished in ways that cannot be seen on earth? We catch glimpses of our own stories, seen partially, as in a rear view mirror. How one choice affected our lives, even if we didn’t know at the time how important that choice would be. 
 
This stage of Mom’s journey is teaching me to let go and to allow her to have her own experience–something beyond her role as my mother and our adult friendship. I don’t know why she needs this particular form of leaving us. It has definitely taught me that there were many mercies in Daddy’s sudden passing. But then, there have been many mercies in this passing, in spite of the sadness and difficulties. 
 
Perhaps her process helps us in our process of saying goodbye. I’m sure that the feeling of Mom as all-powerful and all-knowing was just one stage of childhood, but I found I still carried that feeling with me into adulthood. And so if Mom didn’t understand what I wanted to do (move to Nashville and be a songwriter, among many things) part of me always wondered if she was right and I was wrong. Don’t get me wrong. She supported me. But there were some accomplishments and dreams she could share, and others that were outside of her interests and understanding. Now I am no longer reporting to Mom (other than in prayer and sending invisible love) and am taking responsibility for my life in a new way. And finding unexpected freedom to have my own experience, even if it is different from hers. 
 
I love reading D.E. Stevenson and other novelists we both loved. I share that with Mom in my heart. But I also love going to songwriter nights, and I know Mom might appreciate the fellowship of kindred spirits, but she wouldn’t have cared much for some of the forms that fellowship comes through in my life. There’s nothing disreputable about my songwriter friends (though they may sometimes be a bit raffish) but they just wouldn’t be her kind of people and she would not have appreciated most of them (or the reason to mess around with writing songs in the first place). But she would have appreciated the laughter and fun. 
 
Now Mom is showing me that it’s okay for us to have differing experiences, and sometimes the only thing we might have in common is the human journey. Since Mom’s journey is basically out of our hands (other than Lee and Eddie creating the safe set up so she could navigate this solo journey), there’s no use in feeling guilty that we can’t help her more–or that she can no longer participate in our journeys. I’m seeing that we are connected by Something so much larger than our limited human experience.
 
I also comfort myself knowing that we live life one minute at a time. And Mom does, too. I think that her world (at least on this side) is probably absorbed in the same kind of experiences we have when we are ill. Disoriented, feverish, and experiences based on bodily issues. At the same time, a dream world which is larger and stranger than earth reality. We already know she saw others during her train phase. I believe she is even more guarded in this portion of the journey by angels and ancestors. And, of course, our prayers. So I send love, believing that whatever she can’t use right now will be gathered up and taken with her when she begins that final journey and reaches her destination. I keep visualizing her on a brilliant but foggy shore, and Daddy and Josephine walking toward her through the mist, and following behind all the friends and family she knew. And she will know them there as she never knew them on earth; they will be seen so much more clearly in the bright sunlight of that other dimension where all the earthly realities become the dream, and we will live in the light of greater realities.
She wrote this in an email that really touched me and be more positive about Mom and her life path and purpose.  Thank you Candy for writing this post, I couldn’t have said it half as well as you have.  I realize I am too close to Mom and her journey, too close to see it objectively – I am grateful for my two sisters, they help me keep things in perspective.  Ellen said in an email:

I too am so grateful to Candy for her ability to express the seemingly inexpressible as we go through the process of feeling our way along with Mom and her changes.

I am seeing gifts in Mom’s dementia that I didn’t expect, so it isn’t all gloom, doom and depression. I need to pay more attention to see what she is teaching me with her journey with dementia.

Seeing Mom

February 23, 2014

Some days it is hard to visit my Mom as the dementia continues to take over her life.  I sometimes don’t recognize her as my Mom sometimes – who is that old woman?  But she stays essentially my Mom, the woman who gave birth to me and raised me with my two sisters.  She and my Dad did a great job of making me (I won’t speak for my sisters) feel loved and wanted, taught me integrity ( my sister Ellen feels they gave us a great gift in that, I hadn’t thought of it before and I am glad she said it) as well as honesty, respect for other people and their property.  They gave us discipline too – when they threatened with “warming your fanny”, I knew they would carry out the threat.  They always felt kids needed to have boundaries and they would test those boundaries to make sure they were still there.

I saw Mom on Friday and she was doing well, alert and aware.  Maybe it was sitting at the dining room table instead of the recliner with a throw over her that made the difference.  My neighbor Delores called in the morning and asked to come with me to visit Mom.   She took some sugar-free chocolate and a mandarin orange for her – I took the cookies just in case.  We did have a nice visit and I think I may be getting more comfortable about just seeing how it flows.  At one point I read some of Candy’s new book and Delores really liked it – so I have lent her my copy for her to read.  She also thought “The Translucent Heart” was good as well and I lent her the pages I printed so she could read the whole thing.

I had a long email from my sister Candy the other day; she was writing from her perspective as a daughter living many miles away.

 I feel I can really only communicate from the other side of the veil now. Strange to think that all the things I used to be able to do for her are useless now. No phone conversations, no books, only cards and toys and treats–and who knows what gets through from this side of the veil. I think we have each taken our turn with her process. My Sunday night phone conversations took us through memory lane, then deciding what to do with certain precious family heirlooms (part of the reason for my long list), and then through the disorientation and waiting for the train, which was always a time of reassuring her it would all be fine, and that she would find Daddy and Josephine and friends and family on the other side, and that her daughters would eventually come to join her. 

I also think about our different experiences of Mom in various stages of life and from our different perspectives. As the youngest, I got to know a mother who began to gain self-confidence when she started volunteering at the airport and hooking rugs. She told me that she had no self-confidence before then, even with all the love she shared with Daddy. I think I would have been around eight or ten when she started volunteering at the airport, so the two of you would have been either out of the house or migrating out of the house into adult lives just as Mom was getting some confidence and perspective on herself. I got the benefit of being around in my twenties, too. I could visit Mom and Dad quite often, without all the holiday craziness. Just being there, yet even at that, still not that often. But I saw her in happier times when we were all healthy and independent. 

I often wonder what Ellen’s perspective of growing up is; as the oldest, she saw two join the fold and I’ve often wondered how it felt to go from the only child to an older sister.  Mom and Dad were learning about kids when she was born, so when I came 4 years later, they were more experienced.  By the time Candy came 6 years after that, they were much more relaxed.  It is fascinating to realize how growing up with the same two parents can be so different for each child.

Some of the early childhood training seemed to be about being self reliant; don’t ask for help, don’t bother people, do it yourself.  In many ways that is a good thing, but I realize now that is how I dealt with RA from my diagnosis – not the best way to do it.  But that was my subconscious training, along with not complaining, or at least, not too much.

So many people would tell be I have such a positive attitude about it, plus how I do as many things as I do.  My first response is that I didn’t think I had a choice, I had to do something about treatment for RA.  As for the positive attitude, they had no idea how depressed, discouraged and crabby  I could be only Eddie bore the brunt of that.  Maybe I hid behind a positive attitude, after all, I got a lot of positive feedback.  People would tell me they admired me and how well I do with RA – now that I think of it, maybe I thought it was the one thing I was successful at doing.  Is that why I let it become my identity for so many years?

I have written before how Mom’s dementia has helped me see much more clearly my childhood programs carried into adult life – real gift, though uncomfortable at times.  I am finding that gift is continuing as I become more open to seeing the truth rather than my perception of the truth.  Maybe that is part of Mom’s purpose in this lifetime.


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