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.

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.

A marathon, a 5k and a 100-yard-dash

During most of my adulthood, it was my (younger) sister who lived closer to my parents and was the primary child who did the supporting and engaging. Both my (older) brother and I lived out of state and were busy with our lives. She was the one who went for holidays or visited most often. She had the longest run - about 40 years, though rarely intense on a daily or weekly basis.

She had the 'marathon' - the longest run.

Then almost five years ago, our family realized that Mom, now widowed, needed to move closer and get some help from one of us.  It seemed logical at the time for her to live near me, mostly because I live now where she raised her family, and she felt connected to the area.  So she came here. I've visited her daily or almost-daily for over four years now.

I have had the 5k run.  It's lasted a while.

But I'm tiring out, and I am wanting to do something else.  My husband is able to retire anytime, and we are planning a move to Peru to retire and volunteer.  Yet, I keep making laps on this track.  The same track, the same routine, the laps that seem endless. We keep thinking we're near the finish line - mom's own desire that her weary life ends - then she bounces back and we head around the loop for another lap.

Meantime, my husband waits in the stands.  He has had heart disease and a family history of cancer, and is five years older than me, and we are eager to go to our own next step in life. I am acutely aware of time passing, and that I want to get off the track and have the freedom to have our next (last?) adventure together.

Also, some changes will occur in my mother's financial resources in the springtime.  This is a good time to consider a change.

So, I have opened discussions with my sister and brother about what to do. They have both indicated a willingness to have her closer, though my brother (and especially his wife) have said they could have her in their home.  Their home is perfect (one story, broad hallways) and their location is warm (Albuquerque). It is perfect.  Plus, my sister's home with steps would make it impossible to have Mom in the home and my sister's advanced rheumatoid arthritis would make it impossible to have my sister help with wheelchair outings to doctors or restaurants. So ... we are thinking that the next step for Mom, assuming she survives, will be my brother's home.

Yet, while my brother was the golden child growing up, the beloved firstborn son, he may not be my mother's first choice as a caregiver. She assumes that one needs a uterus to be a nurturer.  My brother's wife is willing to adjust her work schedule, and she is funny and caring. Plus, hospice can continue helping with her care in their home. We kids are pretty concerned that Mom won't react well to this change, but we will be persuasive, and I really think she'll end up loving being so closely connected to family in her last weeks or months.

He may have the 100-yard-dash, the briefest but most intense run.

Each child will have had our own race, our own turn to be close to Mom.  Seems fair to me, and I'm ready.

Another year coming ... and going

Most of us welcome the chance to enjoy another year of life. We try to eat well, visit the doctor as needed, we exercise and fight for life. We take our vitamins. We greet our anniversaries with relief to have survived, and hope for another year. We resolve to do even better next year.

But, when someone is 91 years old and in lousy health, it's just not so fun anymore. She can't walk more than 10 steps (with her walker) without resting. She naps at least three times a day.

When I visited Mom today, she felt defeated and depressed. She has been hearing about Christmas on the television, and sees the oncoming holiday as a marking of yet another year when she has failed to die. She is weary, just bone-weary. Weary of life, weary of each day, each hour. Weary of the effort. And another holiday mocks her, reminds her of even more time passing as she yearns for her own end.

She said she figured out how she could speed her demise .... by not using her oxygen. She decided not to do that, but she thought about it. (Ethically - is that suicide? Or is it merely allowing a natural process to play out, while not availing herself of all possible remedies?  I wonder.) 

I found that she had done some water-colors over the last week.  She had used the cheap brushes, not the treasured old brushes she's had for years (the ones she clutched to her heart in gratitude, nearly weeping with joy, when I brought them back to her).  I asked why she wasn't using her good brushes, and she said it was just too much effort.  So she's using cheap WalMart brushes instead of reaching eight inches to open a plastic bag with some beautiful camel-hair brushes... just out of tiredness.

She and I hugged for a long time, a long and strong hug, her clutching me and clinging in desperation. In sadness.

As I said goodbye, I wondered whether this was the last time I'd see her alive. I wonder.

The sad doll and hospice care

When I was a child, maybe 8 years old so about 1958, my parents got me a doll with a really sad face.  It was something like this photo. I tried desperately to make the doll happy, but obviously with inert plastic, I was doomed to failure.  I could not change the unchangeable. I was utterly doomed.

Flash forward about a half-century...

My mother got a visit from the director of the hospice program, Cathy, who was introducing a new hospice nurse. Later Cathy called me to say they'd like to start a couple of new interventions:  antidepressants, and bringing Mom (an artist) some watercolors.

For some reason, both suggestions really irritated me.

I tried very hard to not just shoot down the ideas. I didn't want to be perceived by hospice as a difficult family member.  Nor do I actually want to BE that difficult person.  And I knew my reaction was irrational.

But we've done this before.. both the antidepressants and the watercolors. For the antidepressants, she tried them twice and had side effects twice, and quit them. For the watercolors, we tried that repeatedly too, at her last assisted living facility where they moved the class to just steps from her room and she still chose not to participate. Then I set her up in her room with an easel, good watercolor papers, her own professional watercolors and brushes, even water. She just was not interested - even when I offered to do it with her.  It was just easier to sit in her chair and watch TV.

But now, to state it from the standpoint of my internal overreaction... the director of hospice has become engaged and will solve her problems. They will make a 91-year-old chronically negative narcissistic person into a happy productive artist with a life full of meaning. Of course, I know that is not the real intention, just an incremental improvement, but it felt like hubris, like a doomed effort.  Deja vu.

I really wondered... why did this irritate me so much?  I want the best for my mother. I truly do prefer her to be happy and enjoy what time is left. So why did this call bother me so much? I really knew this was about me, not about hospice, who are kindly doing all they can to bring comfort to their client.

Then it hit me... I spend my life trying to make my mother happy. My efforts fail. I am now 60 years old, and still trying to make her happy.  For instance, I asked her how was her night... "terrible!". I ask her why, what's wrong, but she can't say ... but just then tells me about a good dream. Then I ask her how the new lift chair is, and she says, I haven't decided yet.  I remind her that the chair helps her get up and be more mobile, yet she still refuses to say she likes it.  I take her to see autumn leaves, and she insists she can't see, although she can see the clock on the wall. And on and on.  I look for positive things in her life, and she looks for the dark side. The hopeless.

Trying to make the dolly smile.

So, if hospice can put her on pills, and if she gets even just a bit better, fabulous. If hospice brings in watercolors and my mother actually uses them even once or twice and enjoys it, wonderful.  The dolly will smile.  Maybe just for a moment.

My brother is irritated with me - but let's not talk about it!

When we were moving Mom a couple moves ago, I had prepared a lot of her apartment for the move to the nursing home.  I had spent many hours sorting through her things, planning and anticipating the move.  My brother happened to have a business trip here, so happily for all of us, he could help; my sister and her husband were coming down from Iowa. So, we were all there to do the sorting and cleaning out and clearing out. Great. It was a LOT of work - furniture and mementos and clothing and hospice supplies, photos and things both precious and trash-able. A lot of work for a short weekend, and three older adults plus two spouses.

And just to give context, I'll remind you I'm a daughter.  Not the golden son, oh no, I am the daughter.  And I'm the middle child.

In the course of the move, my sister and I noticed that my brother was irritated.

Let's just say that he is used to being Mr Male, Mr In-Charge.

Ummmm..... so am I, except substitute "Ms".  I've managed large and complex projects and high-level work teams in my corporate life, all before I retired.  So, I'm really OK with managing things - I was not fluttering around, all confused and silly, "Oh my I wish there were a MAN here to guide me!"  I am not an insane control freak, but I knew what had to be done, and I knew our resources and time, and I was somewhat directive.

Anyway...  at some point, I'd asked the guys to do something, and my brother just got really tense.

My husband said that my brother made some comment about trying to be accepting.  And my brother has been tense ever since. Somewhat.  Except of course he doesn't really say anything directly.  Just curt, just tiny rudeness. Wisps of smoke, not full flames. I won't bother relating the curt email he sent after ignoring my three weeks' worth of emails.

Oh well.  I'm here, doing my thing.  It's easy for him to want to waltz in every 2-3 months and be Mr In-Charge, but here, life is going on without him.  And we're really very OK.  But it puts a distance between him and me.  And I'm tired of being the one to make peace since I actually feel like putting a bit of fuel on that fire.  So, I'll just let him be the way he is.  And it will go away eventually, yet another wound that only partially heals, waiting for the next cut. Just like my entire history of my life growing up in this family.

My father and my sister had a conversation about me, many years ago.  He literally said, "Nancy and I have a great relationship - we don't talk".  My sister was flabbergasted that he so clearly articulated the matter.  That he was, apparently, so very aware.  And - my brother believes we had a perfect childhood, and aspires to be my father.  I believe he has, for the most part, achieved his goal.

Rinse and repeat.

So, the subtitle of this blog says that this will focus on what Mom's care does to her, but also to me, and to my relationship with my family and siblings. 

I've started several posts, and abandoned them.  They were just rehash of where I've been before, what I've said before.  Nothing new, nothing insightful, nothing really very interesting.  

But I guess that's the point of exactly where I am in this place of caring for Mom.  Yes, I have some adrenaline surging about the poor care in her soon-to-be-former home, and some planning and project-management skills surging in looking for the new place.  Many sleepless nights as my mind obsesses about Mom - last night, I couldn't sleep because of thinking about what we'll do for a dresser for her.  (Silly, eh?) So, there are some recent variations in Groundhog Day. 

But, overall, this is still just 'Rinse. Repeat."  (Which is basically the punchline of, "Why did they find the blonde dead, lying in the shower after a week, clutching a bottle of shampoo?  The shampoo bottle said, Shampoo. Rinse, Repeat.)   

In this blog, I could repeat old themes:  My sister has been great.  My brother does not seem to be very engaged.  I am hungry for my next adventure.  I am honored to have the role of supporting someone approaching death. I have grown ... though sometimes reluctantly.  Same themes.  Same posts.  Same same same same. 

Rinse and repeat. 

Rinse and repeat.