Wrapping up the story, Part Two: A new life

I am wrapping up the story of my care of my mother. This is a time of terribly mixed feelings, but thank you for sitting with me, just as things approach the end of the story.

Picking up from my last post about the trip to Albuquerque... from Part One.

We arrived at my brother's house.  I breathed deeply in relief, appreciation, apprehension.

My brother had arrived the night before with the moving truck. They unpacked her stuff and set up her room to be very cozy ... all her precious things around her, on her wall, by her bed. It was sweet and welcome. (As time progressed the last couple of days, the room become overwhelmed with other not-so-pretty stuff, like trash cans for briefs, piles of medical supplies, etc.)

The first night, she was beyond exhausted and went to bed early.  At 4AM, we all woke to hear her yelling for help... she had wet her bed quite thoroughly.  My brother, sister-in-law and myself were all rushing around, fumbling with supplies, like parents of a newborn on the first night home.  (My brother-in-law said she was just "marking her territory" - we all laughed!)  Soon they will be old pros.

We decided to get Mom a whistle to make sure she can be heard during such emergencies.  She has it on a tether around her neck, just as she used to have her call button at the home.

At one point (I think during the bedwetting incident), she referred to us as "her three lackeys".  Hmmm. Not sure I loved that.  She thinks it's quite funny, but she did that to her aides at her assisted living too, and I think she feels it's way funnier than we do.

My sister-in-law... I admit to a measure of jealousy, of turf issues, as she will now play such a key role in my mother's end-of-life journey. She will be the hero, at least that's how I felt that weekend.  Since then, we have all seen my mother's prejudice.  My sister-in-law is Hispanic, and my mother (at times) shows disrespect to her, then when my brother comes home my mother is all smiles.  So, I was wrong about the jealousy, since sadly she doesn't even get to be fully appreciated (by my mother) as the hero that she is.

I am grateful for my brother and his wife.  Especially his wife. She bears much of the brunt my mother's care, and also her worst humor. But she (my sister-in-law) tries to be positive, to be kind. Even my brother has really stepped up - and I say it that way, not because he is male but because he is... well ... my brother. I have underestimated him. He has even helped my mother with wiping after she uses the toilet.  I am impressed, and touched.

Since those early days of her care, he has called to say, "I guess it's too late to change my mind...".  I told him he could certainly find an assisted living home there, if she is too difficult.  It is his life.  It is his family.  He was tired and discouraged, after only a couple of weeks. I think it felt really good to invite her, to be that person to welcome her into his home because "it's the right thing to do", "she's family" ... but the reality is very very difficult.

As I've spent the last month back home, about 2PM I start with growing anxiety, thinking that I need to get over to my mother's, wondering how she will react if I am later than she wished, wondering how I will balance the rest of my work for the day. Then it comes to me: I am free. I can put off that mantle of responsibility.

I have continued to wrap up some final tasks. Pay the last pharmacy bill. Get a refund for the unused days at her assisted living home.  But my brother now carries the load. I am grateful. My mother is, for the most part, happy to be there, and often even appreciative. She enjoys mountain views and meals with family. She is with family.

I continue to be surprised at the persistence of life, in the face of health challenges and even my own mom's disinterest in life. She has continued even though, for some years, she has seemed so weak that I couldn't imagine her surviving this long... and yet, here she is.  (It actually almost makes me sad, when I have just had two other deaths in the last couple of weeks, one of an energetic middle aged woman, and one of a tiny infant.  But, life doesn't work that way, where merit determines life. Not yet anyway.)

So, I guess the purpose of this blog has now reached its conclusion.  The blog is entitled, "As My Mother Slowly Disappears.  My story of caring for my mother as she goes into Assisted Living - what it does to her, to me, to my siblings, to my family."  But it is no longer "my story".   It is my mother's story, my brother's story.  For me, it is finished.

Wrapping up the story, Part One: The Move

It has now been almost a month since I brought my mother to New Mexico to live with my brother Bob.  I made some notes at the time of things I wanted to mention here, but only now do I have the energy and perspective to wrap up this story, our story.  I think this will have to continue across several blog posts, but if you will bear with me, I promise to bring us to a conclusion.

As we neared the departure date, there was much to do. Mom's business papers - I had to prepare them and organize them to handoff to Bob.  Changing addresses, contacting businesses to update them.  Bank accounts, investment accounts.  Create legal means to give my brother the Power of Attorney.  Extensive work to arrange rental of a Portable Oxygen Concentrator (POC) to allow her to have oxygen while on the airplane ($450!).  Working with our hospice hear to transfer her to care down there.  

Then there was attending to my mother's emotional needs.  She was pretty anxious, and I found myself constantly talking her down from a panic of one kind or another. She did alright, with time, but was very worried with all the uncertainty.  She thought she might "get lost" in Bob's house. What would she eat.  Would she be welcome. And so on. 

And there was packing up her apartment. 

The day came for the trip.  Overall, it went fine, but it was utterly exhausting for both of us.  I was pushing her wheelchair, juggling her purse and her (very heavy, bulky/awkward) POC, including trying to keep the battery conserved and plugged in, when possible, and then later changing the 10 pound battery mid-flight. When she needed to use the restroom in the airport, there was a long line, then the exhausting lifting her, changing the brief, convincing her to wash her hands.  By that time the plane was loading ... and there was the struggle to get her into the plane seat.  

By the time we got to Albuquerque, I nearly burst into tears with relief to see my brother and his wife. If there was a physical "key" to my mother's care, I could hand it to them and feel the weight off my shoulders. 

To be continued...

The "big cry"

Wow.  It seemed so far away, and here we are... almost.

I will get on a plane, in two days, to take my mom to my brother's house in Albuquerque.  And then... poof ... she's gone.  I'm free of the responsibility. I go home a couple days later.  Home to ... NOT having to go visit, NOT having to pick up Ensure and yogurt.  NOT having to check her clocks every few days. NOT having to plan my day around when I can manage an hour or so to sit, possibly knit, and visit .... about nothing.  And everything.

I surprised myself today.

My mother has, for YEARS, said she needs to have "a big cry".  Even when my father died, in 1993, I don't believe she deeply cried.  She has trouble with emotions. But I think she aches to cry, to express the emotion that she wants to feel.  She talks a lot about "the bit cry".

Today, as we packed up the contents of her rooms, we looked at each other, and talked about our impending separation and she talked about the 'big cry'.

And I started to tear up.

It surprised me.  I have had such conflicted emotions about my mother.  Anger, resentment, tenderness, sadness, impatience.  Is it love?  I honestly don't know.. or haven't been able to say.

The last few weeks have been filled with logistics.  Arrange for legal transfers. Change addresses. Open new accounts, close old accounts. Pick up my brother at the airport at 2:30.  Rent the truck at 3:30. Call the helpers about when we're arriving at the apartment. Go to apartment.  Pack truck. Disconnect phone.  So, I've been playing Project Manager these last weeks.

Then ... this afternoon ... the tears almost came.  Welled up.  Subsided.

But it's about time. Tomorrow, my brother leaves at dawn with the truck. My sister arrives with her family midday. We hang out ... and Saturday (day after tomorrow) we leave for the flight to Albuquerque. I will stay to get her settled for a couple of days, then return home.  Free.

But between now and then, I know I will cry.  And that's a gift. I thought that my ability to cry about/for my mother was robbed of me, robbed by my anger and pain.  I will have the gift of tears, the gift of being able to mourn.  Because only with mourning can we move to that time that is beyond the mourning - days of peace, of (in time) knowing what's next.

When I was 17, I left home three days after graduating high school. And I sobbed for hours. I cried for things I didn't even know, wasn't even aware of.  Just blindly sobbing.

Now, finally, almost 45 years later, I will cry. And I will understand why. What a gift. Something I can own, emotion that finally can allow me to grieve, and then ... break free.

Past the expiration date

I am the family genealogist. I can easily spend a full day looking at nothing but research of the 1870 census for some long-lost relative, or look at name variations for immigrant great-great-grandparents.  I research facts, but also look for stories that bring these dry data to life ... the great-great-(great?)-uncle who went to the California Gold Rush and got swept overboard.  The ancestor who freed his slaves in Virginia and moved west in a covered wagon.  I even compiled a couple of books for my family, with photographs, census documents, ship manifests, enlistment papers, and so on.

As I scan these ancestors, I am noticing their life span.  Occasionally there are a few that get into their 80s, but many many die in their 40s, 50s, or 60s.  Life was hard.

And I recall my recent trip to Guatemala.  Life is still very hard there. I met people that I presumed were about my age, but then learned they were at least 15 years my junior.

Finally, the 1940 census was just published.  It's a huge deal to genealogists looking for details about where their relatives were in that year.  Did you know the Census Bureau delays the release of census data for 72 years?  I had heard that it had to do with the average life span when the rules were set up.

My mom, at 91, is clearly beating the odds. Past the 'expiration date'.  And, she knows it. She spoke again today about hoping to not be alive by the time she needs summer clothes...

And I'm aware of the time pressing in on me.  I'm 61.  In some places, or in another century, I'd be dead by now.

My own 'expiration date' looms. Not immediately, but I'm aware of the clock ticking.  I'm so very glad I'll be starting my adventure this summer, with our move to Guatemala.  I don't want to spend my final days flipping between Dr Phil and the Weather Channel.

This time I still have is a precious gift. I will spend it with people I love, doing what I love. I will learn and grow.  I'm so excited.

Un-drowning myself

On my way to posting, I wanted to share this fabulous word in Spanish:  desahogar.  It means, to vent or relieve or unburden oneself.  If taken literally, you might say it means to un-drown oneself - "des"(un) "ahogar" (drown).  So, when I feel like I'm drowning in stress or worries or difficulties caring for my mother, I can "desahogar", either here or with my sister or a friend, and it helps.

I booked the flight when I'll take my mother to stay with my brother. It gives me an end date for my time with her, creating both sadness but a tremendous amount of relief. The sadness is that it may well be the last time I talk with her, since not long thereafter, we will retire out of the country.  And, the sadness is seeing her being cared for by my brother instead of by me. He will be fine, and while there will be some advantages (she will live in his home - I think), but some disadvantages (it sounds like he will hire someone to 'watch her' many many hours).  And, it's not me.  The the plus side is that I will have the freedom to start this next phase of my life, a true treasure.

Meantime, my sister has written me of her reactions. In fairness to her, since this is not her blog, I will just leave it that she is feeling sad that she is not more part of this transfer. I feel guilty, like I did something wrong, though I know we have been talking about this (including her) for months ... and my pulling the trigger on the airplane ride just represents the final act of removing her from the Midwest where both of us life. But all these old family dramas play out, even in a way competing to be the 'best child', overtly or covertly or unknowingly or inadvertently.

I have been getting emails from my brother and his wife, and some seem to smack of a bit of self-righteousness and superiority. Maybe my emails to them have seemed that way over the last years, but I don't think so.  I'm trying not to be hypersensitive.  And, if that's the price I pay to have my freedom, then, fine.  Brother, you may have the blue ribbon now, Best Child, 2012-20??.

But I'm sad that my sister is troubled and feels excluded.

I visited Mom yesterday, and some conversation shook me to the bone. Somehow I was talking about my grandchildren, 9 and 11, and about their growing-up years.  She mentioned something vague about when I was that age, and as we sat quietly, I began to reflect on how horribly unhappy I was in my teen years.  Though I have rarely done so, I shared with her how miserable I was in those years, and told about a time when I was doing dishes at the sink, looking outside, and desperately wanting to shatter a glass and cut open my veins to kill myself.  When I finished telling her that, the room was quiet. She turned to me and said, "Where was I?"  I said, "Mom, I don't know.  You were 45 and had your own life to lead."  (Not the greatest response, but she was just not someone I could have gone to.)  We sat quietly some more.  Then she said, "You always kept things to yourself, closed off".  (Yes true, out of survival.)  More quiet.  Then she said, "Well, I tried" referring to her efforts back then.  (No, she didn't, not much if at all.)

She didn't see my tears - not back then, nor yesterday.

As I was cleaning the wineglasses we used last evening, I broke one.  It was the next-to-last wineglass of a set that she really liked.  I apologized, and cleaned it up.  I swear I could almost hear her bring up Kazuki, as she has before.  Kazuki was a prized porcelain Japanese doll/statue, maybe 15", that she received as a young child in about 1925 from an aunt who had traveled to Japan.  It was a treasure, and when I was maybe 3 years old, it was on the hearth of a fireplace, and apparently I broke it.  Mom has brought it up now for six decades, off and on.  I am 61, and I swear that wineglass was Kazuki all over again.  Those unspoken words, those old resentments.  Feeling ashamed for being human.  Finally, Mom's words were, "It was inevitable".

Inevitable.  Jeesh.

So, I have been drowning in sadness since last night.  I'm trying to work through it. To allow myself to be human, to support her in these last weeks here while also supporting and shielding myself.  But it's good to vent, to unburden myself, to "un-drown" myself, to "desahogar" from what has choked me.

Eh? What's that you said?

When I got back from a recent trip, Mom was doing OK, but struggling even more with her hearing. When my sister and her husband came a couple weekends ago, we went to Olive Garden and Mom just sat there, stone silent, staring at her soup.  She had been grouchy to my sister earlier, and didn't act interested in engaging at all.  Finally, after talking to her afterward, we determined that that she was just totally out of touch due to advancing hearing loss.

We all agreed she really needed to get hearing aids, even though she insisted that she will die soon and 'don't waste the money'.  All us kids, though, told her that this is exactly why she saved her money all these years, and that we wanted her to have the aids.

She got them!  Though, yikes, they were expensive!  $5400! (Starkey Wi series). And for a depression-era-person, that was hard.  She still complains that her hearing is not perfect, that the hearing aids are tinny (they are; the ENT folks said her brain will grow accustomed to the new sound). We got the high-end ones so she didn't have to fuss or adjust them. Supposedly plug-and-play.

Still, her negativity continues to play out. Complaining about the tinniness of the TV, complaining that she "can't hear anything better" - then in the next moment she comments about how she can now hear this or that noise. Complaining about the difficulty of inserting them, about keeping them in when she takes on/off her oxygen tubing. Then I come in with my Little Miss Positive, pointing out the plus-side, and she reluctantly admits a few benefits.

We go back tomorrow for an adjustment and check. Maybe we'll keep them, or, maybe we'll find a better model. We'll see.

Dementia, and a wonderful blog post

I found a touching blog post on a lovely blog, Dementia Days.

There is a video there, at http://www.dementiadays.com/2010/07/a-video-worth-watching/, of a lovely example of Validation Therapy, working with an advanced Alzheimer's patient. It was so touching.

Though my mother doesn't have Alzheimer's, it is a great example of respecting an elders' boundaries, while still using their 'vocabulary' and being present for their reactions, even when their apparent cognitive abilities have disappeared.

Beautiful. Please explore the other posts in the blog.  It's lovely.

Disappearing ... both of us?

Mom, disappearing ... the theme of this blog. I would like to revisit this theme, if you don't mind. 

Since my mother will be moving to my brother's in a few months, I am conscious of the need to clean out some detritus, especially in organizing, clarifying and purging old business papers. And when she moves, she will not have her bed or other equipment that belong to hospice here, and will receive same down in New Mexico when she arrives, from their hospice service.  She has said she doesn't need the television ("I can't see it!") or much of other furniture.  Her footprint, her presence, shrinks even more, as she awaits death with hunger. 

Yet, with my own move to Peru on the approaching horizon, I am finding my own life-footprint has dramatically reduced. Instead of my 5-level 4-bedroom 3-bath house, I am in a small apartment (and LOVING it). Instead of an office overflowing with paperwork, we are constrained to a few plastic tubs, and trying to scan ourselves down to almost nothing. Instead of a cherry dining room table seating 10-12, we eat on a card table.  And we are LOVING it! 

We have divested ourselves of most of our family heirlooms, either by giving them to willing descendants or where none exists, to friends who will treasure them and the stories we've shared about the pieces. When we actually leave the apartment, what remains will go the way of the other ones.  We have given away sterling silver flatware, serving dishes.  Limoges china. Antique hand-painted teacups. Linens. Rocking chairs and china cabinets. Photographs. Recipe boxes from long ago. Damask tablecloths and handmade aprons. A thousand little treasures that I enjoyed seeing, touching, to a point ... but that I rarely used, and that buried me under the weight of other people's lives. 

Ten, twenty years ago, I treasured these things. Now they choke me. I drown in their shadows. 

In a sense, yes, I might be said to also be disappearing, in the sense of the detritus attached to us is dropping away. We are less 'significant' in the sense of our perceived stability, or our being Owners of Important Stuff in this world. 

Instead, I feel a thousand pounds lighter. I feel like I can sprout wings and fly. Free of obligation to sit at the Altar of Ancestors, holding onto their things. Soon, we will be down to our two suitcases, flying to Peru, awaiting an unparalleled adventure.  

Even if we have to come back to the USA, eventually I don't think we'll miss all the stuff. Meantime, I will look forward to growing old in the Andes, overlooking an unimaginably beautiful vista, helping others and growing old in peace with incredible richness of life. 

My mother's slow disappearance is inevitable. Mine is more abrupt, more by choice, and I am utterly thrilled. 

The big family meeting, and a future move

I've dreaded posting. We have been going through a tremendous change here, and I have struggled repeatedly how to share it. I have several drafts started. I wonder if I'll even post this.  Well, I need to start somewhere, eh? So, let's go...

I wrote here in November that my husband and I want to move to Peru, to retire next summer. When I started caring for my mother here almost five years ago, I didn't dream it would last so long, and hadn't anticipated this day. Still, it arrived.

My brother and sister came here over the holidays, and we had a family meeting, with Mom. I told her I am leaving early summer for Peru. She had about ten seconds where she looked shocked and a tiny bit emotional, then quietly listened. My brother held her hand as he talked about what he offered - to have her live in his home with him and his wife. My sister talked about how she would like to have Mom in an assisted living home there, though her own health (advanced rheumatoid arthritis) and job and climate make it less than ideal. We said my daughter offered to have her in Wisconsin. So, as of the end of the meeting, she was - shockingly! - accepting of moving to the Southwest with my brother.

I was flabbergasted.  When I expect graciousness, she is negative. When I expect ugliness and pleading and negativity, like with this move, she is lovely and accepting.  Wow.

She has continued to be (mostly) OK in our visits since then. Since I had been talking about Peru, she knew it was a deep desire of ours, and a strong intention - she just now learned the "when".  I am still dumbfounded that she hasn't begged or pushed back yet.

She is anxious about little things.  Getting on the plane - that is, physically stepping onto the plane from the jetway. Will she get lost in my brother's house. Who will dress her in the mornings. OK, those aren't really little things - but they show she is thinking through her life, how it will be, and I think that is excellent.

We've had some vacillations, though.  My brother called one day to tell me he was having "second thoughts".  This was extremely frustrating, since Mom was now counting on this option. It is understandable that he would be concerned about the impact on his family - but BOY do I wish he had thought about that PRIOR to making this offer (and being the big hero of the family meeting). (I think he has come back on track to offer to have her there with/near him.)  Also, Mom has had some time when she thought maybe she could just stay in the assisted living home where she lives - but we talked about the extreme loneliness and the importance of having a health-care advocate who is local (among other things).

It has raised some family issues, however. I am the one with Power of Attorney for legal matters, as well as the co-trustee, which means I have the purse strings. I will need to make financial arrangements to ensure my brother has funds to care for Mom - but he strongly strongly wants to have the controls passed to him. Unfortunately (?), we can't make changes now, since Mom has a diagnosis of dementia. He feels belittled and out of control, which I guess I understand, but he needs to learn to trust that it will be OK. We will devise some strategies to make sure he is very well funded to handle her needs.

I am deeply grateful for the willingness of him and his wife to do this. It's a huge deal - whether she is in the house especially, or even to have her in a nearby facility.

I am also tremendously relieved that I have an end-date in sight, so we can start this new chapter in our lives.

Of course, Mom finishes each chat with comments about how this may not even happen, that she eagerly hopes she dies before this comes to pass.  She continues to be ready and hoping for her life to end, the sooner the better.  And I say, yes, Mom, that's true.  Let's see.