"In and out of dementia"

My mother called today to tell me she is "going in and out of" .... ummm  ... and we finally determined the word she sought was "dementia".

She feels out of control. Intermittently confused, lost.

She wanted me to 'note the date' of the inception of this decline.

Then she was ready to hang up the phone.

Sad. That's all.

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.

What song would you sing about your mother?

I went over to a friend's house, a Guatemalan family, where we did karaoke along with other guests from Mexico (I speak Spanish fluently). The hosts didn't have any 'American' songs, so we just enjoyed a fun evening of robust singing of very sentimental and classic Spanish songs by the likes of the famous Latino idol Pedro Infante. These songs were as well known to the other guests as would be, for me, "Blowin' in the Wind", or "Big Girls Don't Cry" or "Somewhere Over The Rainbow". So we listened and joined in to the extent possible, and had loads of fun.

One song came along tenderly addressing the singer's mother, talking about how sweet and gentle and loving she is, how tender and giving she was. The singer adored his mother, missed her terribly. My misty-eyed Guatemalan friend spoke tenderly about her beloved mother, and showed me a picture on the wall of a warmly smiling and round mamacita.

And I felt so alone.

I really tried to imagine how that felt, to have such a tie, such a fondness. To be able to feel so warm and filled with rich and loving memories, to have felt so secure and nurtured. To miss one's mother so terribly. I felt like I was trying to imagine some foreign culture, some alien life. It's like there is an empty space in that part of my heart, a space that never got filled.  I grieve that loss.

My father died in 1993.  I have never missed him. I have never cried at the loss, and feel utterly no need to do so. I have never wondered, "What would he say about this or that?" Not once. It makes me sad to admit that... a loss for him, a loss for me. But, that is another subject.

Make no mistake ... I continue very engaged in her care. I tell her I love her, and I do. She has suffered some possible cardiac problems over the last few days, and I'm very worried and am talking to staff to ensure the best care, and I am going to see her to hold her hand. This post may sound cold, and that's not the whole truth of the matter. I feel tenderness toward her, and she expresses her gratitude and her desperate need for me. We laugh together and spend time together. We have a glass of wine and dinner each Tuesday. I pick up her room, and bring her treats.

If I were to compose a song about my mother, I could honestly say she had a sense of humor, she was intelligent, she was articulate, sharp and observant. An excellent speller and perfect grammar. I could write a verse about how she gave all she could, based on her own coolish upbringing. But I'm utterly unable to wax poetic about her sweet warmth or rich love or tenderness. It feels weird ... and very alone.

A close call, and a disappointment

Mom called me Sunday morning to say she had chest pain and a feeling that an elephant was sitting on her chest... a classic sign of a heart attack, though she did not have other signs (sweating, nausea, shortness of breath).  From some tests she had five or more years ago, she does have some blocked arteries, so a heart attack was possible, even probable.  This event lasted a couple of hours.  They gave her a pain pill (half a hydrocodone).

Of course, I went directly there. The staff at her home fussed over her, and called hospice. The hospice nurse came and evaluated her and stayed with her for a time. I was there, holding her hand and talking with her. I called my siblings and my daughter, who is a paramedic.

As she slowly improved, she perked up. She enjoyed the attention. It felt good for her.

After the event passed, and it was nearing time for going to lunch down the hall, she said she felt really disappointed. She couldn't articulate why, but she asked if I understood. I said I thought so, for two reasons. I thought she was probably disappointed that her life struggle had not ended that morning, that she needs to go on living a life that she is not enjoying.  She nodded vigorously.  I said that, secondly, she probably enjoyed the people fussing over her, showing they cared for her and would help her ... and that maybe she was disappointed that all that attention had passed.  She said yes, you do understand.

I guess we all enjoy some attention. Some fussing. A reminder that we matter, that we aren't invisible. That if we are nearing the possible end of our lives, there are some people who will break their busy routines and pay a little attention. Notice us. Show kindness. We are all hungry for a bit of love, especially in the face of our own death, which we must each face alone, profoundly alone.

To Shep and Buddy - and mom

(I had posted this several months ago, but it was too painful to see 'out there', and I pulled it from the blog.  However, I decided to repost it. I think it's time...)

We have two dogs that we rescued from a shelter, Shep (on the left) and Buddy. We got Shep about 7 years ago, and Buddy about 6 years ago, although the shelter could not tell us their ages when we adopted them.  Shep came to us as a wildly energetic dog; we got Buddy as a companion. Buddy, who had been in the shelter a long time before we came, was very subdued; they thought he was an elderly dog because he just seemed so weary.  We hoped they'd balance each other out.  Over the years and now, Shep has become more timid and clingy and tired and in pain, and Buddy has recovered completely and is the more energetic of the two, and may even be the younger one. He certainly acts like it. They have had a great life, with loads of love and a huge backyard.

The very very sad fact is that we can no longer care for them. I was laid off three years ago. We are selling the house to move into an apartment, where it will be impractical and unfair to care for two large dogs. Next year sometime, we expect another move where pets will be completely impossible.

Thursday we have an appointment with the shelter to bring them in for a 'surrender', (although we may have found a home for Buddy already; we hope...). It is a 'no-kill' shelter, as long as the dogs are assessed by their vet as being "medically adoptable".

And, I believe that Shep will not pass.

At that point, we have the option of taking Shep home, or allowing them to put him to sleep.  We just can't keep him any longer.  We can't keep this decision suspended when he has a medical problem is hanging over him. It's time.

So now, every time I see him, I see his fate. I know the likely day of his impending death.  Thursday. Yes, I try to cuddle and love him as much as possible now... but it feels so awfully sad. And extremely weird. And filled with guilt and regret.

And I think of human life.  What if we literally KNEW the day of our own impending death? How would we live it differently? What if I knew the exact date when my mother would die? What if she knew?

I know the adage about living each day as if we would die tomorrow (or, next week, month). Say what we need to say to those we love. Live fully. I get it, and try to do that.

But still, what if we really knew?

And I look at Shep, and just want to give love and cuddles and say, I'm so sorry, but very soon you won't hurt anymore. And ... in the back of my mind, I think of my mother, and the NOT-knowing-ness. I honestly don't know what to make of it, except to keep loving and showing kindness and being patient with her. That her own life force will eventually end of its own accord, with no interventions to either speed or delay death, and I hope, it will be peaceful. As will be Shep's.

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.

Smoke and ashes

I posted this about a week ago, but found myself terribly uncomfortable to have so much very private history made public. No one responded (except a friend, privately). I have no idea if just no one read it, or if they read it and found it repulsive or terrible uncomfortable.  I un-posted it for a time.  It's now going back up, but I don't know for how long. Courage and honesty is one thing, but this may be another, especially if I don't get any comments.  But, here goes. Uncomfortably, I'll press Publish again. 



Over the last two weeks, anticipating a move from our house, I have been purging my basement of about ten years' worth of material from therapy.  They were awful, awful days, those ten years, of vomiting out loads of pain and grief and anger and anxiety I'd held locked inside.  For a few years now, I've been done with therapy, really really done, and a thousand times better.  It was time to let go of the detritus of my therapy. As I burned the material, I watched the smoke curl upwards, and ashes drift across the grass on this beautiful day.  I tried to catch some of the larger ashes, and they crumbled in my fingers.

Over the years, I have kept my mother mostly in ignorance of the extent of my therapy and pain. Let's just say that she was there when I was absorbing the pain and fear at the beginning, and the few times when I shared tiny pieces of my recovery with her, her response was not what I might have hoped. So I have completed my internal work without her, and I am glad of it. 

And yet...

In recent days my mother talks about feeling her own death is quite close.  Not just what she has said for years, "I want to die".  No, she now says that she feels she WILL die in the next days, perhaps weeks.  And I see her weakness, her utter weariness, her lack of appetite, and I believe it is possible.

As I look back on that bonfire, I have been reflecting on the symbolism of the smoke and ash.  It was so difficult to get to that point, but now it has been consumed so easily. It has disappeared into nothingness. I no longer need to carry all that. And my own mother, her own history, her own hopes and dreams and disappointments, her own behaviors as a mother, her own pain, will soon disappear just as quickly.

I celebrate that I have been able to spend the last five years caring for my mother without being crippled by the past. Being an adult with choices, with power. I have been able to find a way to love her, to be tender and kind. I'm so glad we've had these last five years. I've become whole.

When she does die, I'm sure I'll miss her, to some degree, but I also see her passing as a moment when I pick up the ash and it crumbles in my hands. She has no more power to hurt me. I will burn away any remnants of the grief and I will be left with some of the love that she surely intended to give me, even though she wasn't really able to love as she might have wished.  But me?  I will be free, with my face in the autumn sun, a cooling breeze and dear friends at my side.

Carcinoma ... 'to treat or not to treat, that is the question'

With apologies to William Shakespeare, we experienced an echo of his famous question, 'to be or not to be'.

Mom had a spot on her forehead that has bothered her over the past year.  Her fingers constantly fly up to rub it.  It is barely visible, and it didn't seem to be hurting anything, so I was mildly irritated by her obsession with this bump.  It seemed silly and vain to me, to be honest, kind of like her urgency to keep a stock of depilatory to remove her (barely visible) upper-lip hairs.

Still, I took her to her regular doctor - twice. He used a substance to try to freeze it off - twice.  Each time it came back.  The third time he referred us to a dermatologist.  I admit I still felt it was just not that big of a deal, though I saw that it had grown quite a bit, so I arranged my schedule to get her to another doctor visit.

After a biopsy, it came back as Squamous Cell Carcinoma In Situ.  In the photo below, the one with the circle was the target of the biopsy.  The other larger one remains.

The question now became ... what's next? What treatment will we choose?  She is 91, on hospice for congestive heart failure, but she could survive for a few more years.  What to do? 

The dermatologist prescribed a course of Aldara, a cream chemotherapy.  After reading about it, I became convinced she would not tolerate the pain, itching, bleeding, and other awful side effects.  In talking to the doctor, we learned that the options are: 

1. treat aggressively with Aldara and suffer the side effects (though the doctor said they are 'not that bad') 
2. treat less aggressively with Aldara and suffer fewer side effects, possibly slowing any growth
3. treat it surgically (to slow it down), but that would likely require a skin graft
4. not treat it, knowing that any resultant possible spread of this 'very slow growing' and 'surface' cancer would take more years than she likely has remaining in her life. 

She chose Door #4, not treating it, and I fully support that choice.  

This was a very sobering consideration, reminding us of the quality of life vs quantity of life. We talked again about her choice being on hospice, choosing not to use life-extending measures. 

So, returning to our friend Mr Shakespeare, we read on:

To be, or not to be, that is the question:
Whether 'tis nobler in the mind to suffer
The slings and arrows of outrageous fortune,
Or to take arms against a sea of troubles,
And by opposing end them? To die, to sleep,
No more; and by a sleep to say we end
The heart-ache, and the thousand natural shocks
That flesh is heir to: 'tis a consummation
Devoutly to be wished. To die, to sleep;
To sleep, perchance to dream – ay, there's the rub:
For in that sleep of death what dreams may come,
When we have shuffled off this mortal coil,
Must give us pause – there's the respect
That makes calamity of so long life.
For who would bear the whips and scorns of time,
The oppressor's wrong, the proud man's contumely,
The pangs of disprized love, the law’s delay,
The insolence of office, and the spurns
That patient merit of the unworthy takes,
When he himself might his quietus make
With a bare bodkin? Who would fardels bear,
To grunt and sweat under a weary life,
But that the dread of something after death,
The undiscovered country from whose bourn
No traveller returns, puzzles the will,
And makes us rather bear those ills we have
Than fly to others that we know not of?
Thus conscience does make cowards of us all,
And thus the native hue of resolution
Is sicklied o'er with the pale cast of thought,
And enterprises of great pith and moment,
With this regard their currents turn awry,
And lose the name of action. Soft you now,
The fair Ophelia! Nymph, in thy orisons
Be all my sins remembered.

True disability

Disability ... a term filled with sadness, regret over what one can't do.  I remember that my father used to get very upset upon hearing that word, after his amputation, instead wanting to focus on what he could do.

My mother could be considered 'disabled' now.  She uses a transport chair to get around. She walks with difficulty, if at all. Her mind is sharp, but her physical abilities are limited.

Yet, last week we went on a trip to visit her old friend, and I have walked away realizing again, that her greatest disability is not her physical constraints, but her unwillingness to expend herself mentally and emotionally.  She has admitted she is lazy, and I haven't seen any evidence to contradict her. She admitted she is 'non-participative', and I agree.

We spent the day with her childhood friend, the same age as her.  Her friend is not as physically-challenged as my mother, though she has recent changes in her state of health. But she has stayed engaged with life, curious, eager to know more and to stay connected.

In contrast, my mother just sat in her chair, staring into space.  She didn't ask questions about her friend's recent loss of her husband, about her children or grandchildren, or about her health. Mom just sat there, and when she spoke, she commanded.  "Give me a kleenex!" or "Take me to the bathroom".

I have become very friendly with this friend of my mother's, and she expressed shock at my mother's decline and her commanding tone. We spoke later, and she told me about my grandmother (whom I never met).  She would tell her family that she felt weak (feigning illness? or, ill?), and all would dance around her, and do her bidding. And my grandmother would take my mother to the department store (with her friend), and buy her 2-3 dresses at a time - during the depression, when they were in financial straits to the point of losing their house.

My mother grew up in an environment where she felt entitled, privileged. She married my father, who adored her, and she continued as the princess.  My father 'carried her' socially, making the friendships for her (then breaking them when his temper caused a rupture).  But my mother just remained passive, waiting for good things and for people to come to her, to entertain her, to worship her. When he died 15+ years ago, she has just slowly withered with boredom.

I honestly believe that is her true disability - her unwillingness to give of herself, her unfamiliarity with even HOW to engage with others. It's like speaking Chinese to her when I talk to her about it.  She is crippled by her own self-absorption.  She is hobbled by laziness and disinterest. That is the tragedy - she could have had such a rich life, had she been willing to do more for herself and more for others.

Tragic.

Settling for good enough

In our childhood, we dream of marrying a prince (or, in my case, a Beatle: Paul McCartney was MINE!), or being a cowboy or cowgirl or being a sailor on a pirate ship.  Or .... what was your dream?

In our young adulthood, our dreams have moderated, they have settled into something more realistic but more concrete.  And we imagine, if we are an archaeologist, that we'll find the next King Tut's tomb; if we are a scientist, we hope to cure cancer. If we are in business, we will found - or be part of - the next mega-corporation.

When you're 90 years old and facing possible amputation due to a toe that does not heal, news of tiny incremental improvements bring great pleasure.

Yes, Mom's toe is ssssllllloooooooooooowwwlllyyyy getting better.  Yes, it's pink, but at least it's not red.  Yes, it's swollen but not uber-puffy as before. The pain is still there but the nail is almost now gliding over the top of the skin - 'just a week or two more, Roberta'.

During this time we've addressed some matters that should help with blood sugars.  She is going to have yogurt as a midnight snack (80 calories) instead of the Ensure shakes (240 calories).  (Diabetics as she is need a midnight snack to avoid overnight low-blood-sugar problems).  She will have no orange juice at breakfast, or if they give it to her anyway, she will just have a few sips.

Sometimes we just need to settle.  She isn't enjoying a 10th decade in robust health, but she is getting by, she will probably have both feet to help her with her beloved walks, and she has family and a home where she is well-cared-for.  For now, for her, that's good enough.

Now if only her daughter (me) would visit for 4 hours a day.  THEN life would be PERFECT.  Sigh.

Hospice services ... a delicate dance, a partnership, to support my mom

Things feel like they are going downhill in the hospice services that Mom is receiving.

We started out loving her hospice service when she started over a year ago (for congestive heart failure).  We had Margaret who was a funny and sarcastic nurse with a gravelly voice but who was great communicator. (Margaret died, tragically).  Then there was Sandy, whom we also really loved - quieter but solid and clear-thinking.  (Sandy moved out of state). 

But in between, we've had a number of interim nurses whose names have disappeared from my memory.  Some who had less reliability, or who seemed disinterested, or who just disappeared, and on to a new one. 

Right now we have a hospice nurse, Mike (whom Mom always calls a "male nurse"... sigh).  He is one of the senior nurses in the hospice group, but he's a bit odd.  OK, quirky is OK ... I actually really like quirky-ness.  But he is a bit loud and quick to talk but not as eager to listen. My sister was creeped out when he came in and gave Mom a big kiss (on the cheek), saying "I gotta get me some sugar" or something similar. Today he described how much he likes my mother, and claims she pinched him on the butt one time.  OK, that doesn't sound like her, but OK.  Quirky. 

Last week, I called him twice and asked for help with the infected toe.  I never got a call back, which is odd, so twice I called the office and said I hadn't yet gotten a call-back. Finally we spoke, and he found he didn't have the correct number. I guess that happens (even though my number is all over the records there).  Yesterday I called and asked (for the third time) for results on a test, and still no call-back.  This guy is getting on my nerves, with no routine communication to me and not even the courtesy of a call-back. 

C'mon, Mike.  I'm patient up to a point, and try to be understanding about lost phone numbers and your days-off. I know you're busy.  Maybe you view family members of hospice patients as a distraction? But I am your biggest ally - or I'll be calling your boss again. Please let me be your ally and partner in caring for this sometimes-difficult but weary old woman, OK?

FOLLOW-UP:  Mike finally called back - several times with individual new bits of information. We finally had a good conversation about Mom's heart function and her blood sugars. He still hasn't yet been back to the office to get the results of the Holter monitor heart function test that occurred a couple months ago, but he will tell me tomorrow.  And, he said that the doctor has ordered an echocardiogram on her in a month or two for pulmonary hypertension. 


I just have a sense that Mike is overextended, and always in a rush.  He throws out comments, like "just between us - be sure to keep on the facility on her blood sugars", but they ARE doing blood sugars 4x a day.  It is he who has not looked at them!  I know that hospice work is difficult, and that my mom is not one of the urgent very-end-of-life cases.  Her needs are more chronic, but she too is dying.  Her intake is diminishing. She is nearing death, presumably.  I need to stay more connected with Mike. He may (or may not...) know exactly what is going on with Mom, but I want and need to know too.  This is part of the package. 


I also will accept on myself the responsibility to be the squeaky wheel.  If I need more conversation with Mike, I need to persist in asking for that (as I've done before, and as I did today).  We did have a good conversation finally this afternoon, and I expect more information tomorrow.  In life, usually have a strong ability to ask for what I need, but sometimes I forget when dealing with emotionally-charged situations like this.  I somehow was surprised that I'd need to do so with hospice - but though they are a caring agency, they are also very busy humans. An important reminder to myself.  Just ask, even if I have to ask a few times.


This is a delicate partnership, a dance, a shared relationship to support someone - to support my mother - in the last days or weeks of her life. With effort, we can work it out, to her benefit.  

It's just a toe...

Mom started complaining a few weeks ago about an ingrown toenail.  A podiatrist comes to the assisted living center where she lives, so I hoped that doctor could take a look at it when she arrives, but it got worse quickly.

And - she is diabetic.

And - her diabetes is not in good control.

She is pretty good with her diet overall, but does indulge in desserts at times. When her sugars are high, she always says "Better high than low." That is true in the sense that she has had numerous serious low blood sugar events, and these are immediately life threatening. High blood sugars have long-term damage.

So, her ingrown toenail has become quite serious very quickly.  When I took her to the podiatrist's office, it looked awful. I'll spare you the details, but over the last few weeks, we've been aggressively treating it with antibiotics, creams, cotton, her foot being elevated, and epsom salt soaks. She is being transported in her wheelchair instead of her preferred walking. Slowly, it is improving.

We went through this with my father. He was also diabetic, in poor control.  He ended up with an amputation below the knee - but he was about 70 and much more able to rebound (prior to his death a couple years later).  On a 91-year-old woman?  Not so much....

Yes, just a toe.  But it could end up being the greatest single influence in the remaining time of Mom's life.  She has been really grouchy about the limitations and requirements to treat the toe.  But I've reminded her of the inconvenience of living with an amputation. Now, that's a bummer.

So, back to Epsom salt soaks and elevated foot and creams and antibiotics. And, please Mom, hold the grouchiness.  We're trying to save both your life and your quality of life.

Lunch, my shlumpy clothes, and a wistful look back

I asked Mom if she'd like to go out to lunch.  I'd been away from her a bit, between a long weekend and a medical procedure, though we've talked daily. But she's been feeling a bit neglected, so I wanted our visit today to be a bit special.

We went to one of her favorites, Olive Garden.  As I looked around, I was struck by the way our clothes and our companions brand us.  I saw tables of apparent co-workers, dressed well, or at least 'business casual', talking intensely.  I imagined their conversation ... about interest rates, or project deadlines, or complaining about the boss or the long work days.

I, however, was with the 90-year-old, who came in shuffling extremely slowly with her walker.  We had little to say, because we'd already exhausted our usual topics. Instead of a nice knit with a silk jacket and perfect jewelry as I'd worn before, today I wore my shlumpy work-around-the-house, worn-at-the-collar grey velour outfit.

For a moment, I was jealous. I felt ... unimportant. I remembered the days when I went to lunch with co-workers, when we filled our table with laughter or urgent discussion or complaints about all the stress. When I looked good and was valued by my company, my boss, my peers, my clients. I was an expert. I was respected.  I  influenced senior decision-makers. As I look back, it seems that I used to be important, in my profession.

A few years ago, I chose a voluntary layoff from this Fortune 50 company. I wanted to do more in community service, and supporting my mother and my grandchildren.  I honestly am SO very very glad, then and now.  Though my work now does not have the value placed on it by salary or corporate world, I remind myself that I touch the lives of humans. I bring meaning to real people. I make a difference in a way that my Senior Program Manager job never did. Never could.

And just maybe just a couple of them looked at a relaxed woman lunching with her aged mother, sitting in a comfortable outfit, and were just a little jealous.

A terrible honor

Among my siblings, I support my mother here, my sister supports her father-in-law who lives in a nursing home a couple hours from her house in Iowa, and my brother brought his father-in-law in his home some months ago.  We each have our responsibilities to our senior generation, to one degree or another. 

I received an email from my brother, comparing his father-in-law, 'Ted', to my mother.  It was a lengthy email, more than I'd heard from him in some time, comparing functionality point-by-point.  Ted is much worse than my mother, and my brother and his wife do a great deal of the very-hands-on personal care.  Ted has difficulty (or complete inability) with all of the ADL's (Activities of Daily Living: continence, toileting, transferring, ambulation, dressing and personal care, feeding oneself).  My brother says that if Ted was in a nursing home, he would die, period.  

It was a "you are so lucky" email.  

And, yes, that level of care is not something that I am doing with my mother.  She can use a walker (though slowly with difficulty and frequent rest stops).  She can transfer with difficulty, very slowly getting out of her chair or bed and getting to her walker.  Both the continence and toileting part, she requires complete assistance from the aides at the assisted living home where she lives.  

So, yes, I do have an easier time than he does, though I have been visiting her almost daily for three and a half years, and suspect I'll do it for a couple more.  I would guess that his father-in-law will not survive as long.  His effort is much more intense but will be briefer; my effort is less difficult but much longer. 

My sister is a school teacher, and then spends entire weekends driving to and from visit her father-in-law, grading papers.  Then she has to go back to work on Monday.  Other weekends she comes here to Kansas City area to visit our mother.  

And, amid all this sacrifice, family issues from decades ago arise.  The competitions. The roles and labels we received then.  Old irritations.    

Each of us carries our load, our duty, our responsibility, to the previous generation.  

I told my brother that I view this as a 'terrible honor', to support someone as they approach death.  When elders are feeling vulnerable and helpless, when they can't control their bladder or bowels and feel shame, when they know they have just a short time left ... or, if dementia has robbed them of awareness, they may not even be aware of their fleeting future.  The responsibility can be terrible and overwhelming, but there is a great honor in being that person's sponsor, protector, facilitator, and friend/family at such a vulnerable time.  

Mike, the uber-chef, and his 'special sauce'

Let me tell you about the charming and kind chef, Mike, at my mother's new care center.  He shows me that so much depends on my attitude.  I've written about him before, on February 28. He has continued to impress me.

I met Rick as we sat on the couch at the care center, waiting to sign admission papers.  A burly man was sitting there looking at some menus, and he stood up (as a gentleman) when we, as ladies, entered the room.  We started chatting.  He is a displaced Boston Italian, charming. He seems to have a million stories, and has had a rich life. He is a cook, and has owned restaurants with dreams of caring for his family doing what he loves. Yet, after some twists and turns in his life, he is here, cooking for some very senior citizens.

Now, how would you handle that?  How would I handle it?  Would I see myself as a failure, bitterly disappointed to have to cook for those who may be quick to complain?  These elderly ladies and men have palates that are Midwestern, leaning toward meatloaf and mashed potatoes, rather than robust and Italian as Mike loves to cook. Many residents have reached an age where little tastes good, and medical issues may prohibit them from having as much salt and sugar as they might like.

So, given all that, would I value this place in my life, if I now had to cook for these folk?  Would I consider myself as being in a successful place in my career?  Would you?

If you have any doubt, please talk to Mike.

Mike views this stage in his life as being golden.  He works long hours - from before breakfast to after the evening meal - but just for three and a half days a week. The rest of the time, he gets to enjoy time with his family and spend time with his children. He lives in a city where he is able to live at a slower pace than Boston, and I assume, to live in a better home that he would have been able to afford there. You'd think he'd been handed the keys to the city. He glows when he talks about his life and family.

Even more, he treasures his privilege of cooking for the older folks. He told us that he is very aware that he will probably cook the very last meal that some of the residents will ever eat, and he counts that an honor.  As we sat there, meeting him for the first time, he repeatedly insisted that my mother tell him exactly how she liked things cooked, and he means it!  She even said she doesn't like potatoes in her soup, and so he makes every effort not to give her potatoes in her soup - and he doesn't even point out to her that it's a little cuckoo that she loves potato soup but dislikes potatoes in her soup!

After dinner, he comes out, takes off his cap in deference to the ladies, and talks to his guests.  But he doesn't stand next to them, nor even lean down toward them.  He gets down on one knee to be sure he is on their level, to hear and look at them in the eye. He laughs with them, gently kids them a little, and gets ribbed in return. He watches to see what food gets returned to learn how to improve his offerings.

And his food is delicious, by the way.  Shrimp scampi and barbeque ribs, chicken-fried steak, custom-made salads, and egg or tuna salad sandwiches that are so stuffed that they overflow the side of the bread. And, there's even the occasional spaghetti or ziti pasta! Really delicious.

Honestly, he might still cook about the same, whether he viewed his role as important or not. But I can't help but believe that there is an added sweetness, a 'special sauce', that comes from someone who has chosen to be content. Someone who sees the goodness in his situation, and look beyond the disappointments or even bitterness that we all experience in our lives. Mike smiles his wry lopsided Boston grin, tells you about his kids and this week's menu and about his great life, and you know you are in excellent hands.

Learning limits

A comment on a post from one of my favorite bloggers,  washashore wannabe, reads, "No one person can keep another person alive - this is what I've learned to tell myself."

Yes yes yes.  Exactly.  What a difficult lesson.  Thank you for reminding me - I'm grateful.  (And, readers, be sure to visit his wonderful blog, at http://midlifemidcape.wordpress.com/). 

I remember the first year(s) of caring for my mother as she moved to a nearby assisted living home. I ordered her prescriptions and prepared her medicines, took her to doctor's appointments, arranged her clothes. I visited her daily, negotiated with caregivers.  I felt the terrible burden of this woman's fragile life being in my hands. My often clumsy or busy hands.

Even as she proclaimed her desire to die, it seemingly became my responsibility to make her WANT to live. As she sits bored in her chair, merely awaiting Dr Phil each day, refusing to participate in most activities, she yearns for death. What will I do about that?

I have learned, and occasionally must re-take the lesson, that I am not responsible for her staying alive.  Even more difficult for me, I am not responsible for her happiness or for her having a meaningful or rich life.  She alone must do that herself - live - in all senses of the word.

A welcome inheritance

In our conversations, as I express a preference or interest, my mother loves to wonder aloud, "Who did you get that from?"  If I drink a lot of water, "who gave you that?".  If I am interested in genealogy or like history, she debates the originator of that gift, as if I had no input.  I am an artist, and she likes to know that, like her, I am creative. When I am optimistic, I am my dad.  And on and on.

It has been rather irritating, honestly.  I haven't had particularly warm-and-fuzzy memories of my difficult childhood.  And, having left home at 17 and made very very different choices than did my parents, I consider myself to be very much my own person. As I've moved beyond anger and bitterness at my past, and come to peace with my mother, I'm somewhat less resentful of her having to ascribe every morsel of my existence to something SHE (or my father) gave me.  But clearly, yes, it still carries some sparks. 

However, recent medical issues have made me grateful for one thing - a (mostly) very healthy heart, much like my mother's.  

The issues I've had have to do with some recently-discovered electrical issues - episodes of tachycardia, atrial flutter or AVNRT.  My mother has atrial fibrillation, very related. Both conditions represent a short-circuit, with potential complications but easily survivable, and can be cured with a procedure that is scary to me, but is quite common (an ablation, a 'zapping' of the short-circuit area).  

But the really excellent news, the wonderful inheritance, is that I apparently have a very very healthy heart (other than the electrical problem), in spite of my very inadequate care of my health.  I am overweight and diabetic, and have had cholesterol problems before I found the right medicine.  I have been fearing heart problems with every twinge in my chest or arms, since my father had heart disease (and my brother and my husband...).  Yet, I have excellent results on an recent extensive workup - very good pumping (ejection fraction much better than normal), no plaque from the cholesterol (calcium score of zero).  I can now fix my wiring and hope for a long life. What a relief. 

My mother has so far lived until 90, and her own father lived until 92.  I think I inherited her heart - both the electrical problems and the strength of it.  Finally, I can clearly and openly say, Thanks, Mom.  I got that from you.  

Eeyore, chapter two

Mom's cough has gotten worse.  This is a big deal, since a cough can turn into a fatal pneumonia.

The hospice doctor came yesterday, Saturday, to see her.  Prescribed another antibiotic and some breathing treatments on a nebulizer, 4 times a day.

I came to see her late yesterday, about 8PM, and the nebulizer machine was sitting there (delivered by rental agency contracted for by hospice), but not used.  The aides at the home didn't seem to know anything about it.  I called hospice to ask, and they said, yes, they should have the orders and then ... 'let me call you back'.  After a few calls, and a late-night visit by the director of the hospice agency...  here is what happened (I think):

It seems that the the hospice doctor assumed his hospice nurse would fax the orders.  The hospice nurse assumed the facility would see the orders and make it so.  The facility aides somehow missed the orders altogether.  And, mom lost a full day in improving her lung function.

Mom didn't get her breathing treatment via nebulizer until 2:30 PM today. Then they were late with the next treatment, so that they could only get two treatments in today, rather than the three we wanted to squeeze in.

What is going on?  I just don't get it.  The proverbial rain cloud over Eeyore (mom) continues to rain.

So, let me breathe deeply as I conclude this blog post.  Maybe I'm getting too much into boring weeds of mom's daily treatment, in my frustration with their errors.

So let me step back and just say...  I think it has been essential to take a very proactive role in mom's care at her homes.  I'm not saying that family members should be a royal pain to care facilities - but to be a very VERY active and engaged partner with them in her care.  I want them to understand that we are working together - and that I am their best friend, or else I'll ask them directly and specifically about matters until I understand that they are handling her care appropriately.

I'm there almost every day.  I make an effort to learn the aides' names - Heather, Cindy, Petti, Holly, etc - and to greet them and to thank them just about every time I see them.  I smile, show genuine interest, and joke with them.  But - BUT - I also insist that Mom gets the care she needs.

Honestly, I'm exhausted right now.  Weary of fighting this battle again. Will Mom survive her 'care'?

Eeyore in the 'home'

Maybe it's a curse.  Maybe mom is just our own Kansas version of Eeyore.  While my mom has had her moments of being difficult, I don't see that as her pattern right now.  Yet, things keep happening.

Last night's aide refused to help mom change her brief at bedtime.  When mom asked for help, the aide pointed at the wet brief and said, "Take that off.  Then put this on."  And walked out.  This is an aide that has a good reputation.  (The aide will be assisted to understand what should have happened.)

The night before, the aides couldn't find mom's medicines in the cart.  Inexplicable, since the day aides could find them.  The night aides couldn't. (She eventually fell asleep without the sleeping pill.)

Her sheets haven't been changed for over two and a half weeks because they do that on Shower Day, but she wasn't scheduled for a shower there since hospice comes in twice weekly. (She has now been scheduled for both a shower and sheets.) 

Mom was worried that she had offended someone (which is not completely out of the question, given her history, but is not the issue here).  And even if she had been crochety, she deserves good care.

And of course, this follows a nightmarish 5 weeks of dealing with issues at the nursing home where we had just moved her.  I kept complaining, daily, constantly, over real issues. I felt like a real kvetch.... because I was one, though fully merited.

Problems here are nowhere near as consistent nor as major nor as frustrating as in the nursing home, but things do keep happening to her! We are handling them with the facility without the least bit of rancor on either side ... and our few concerns are being well-received and handled correctly.

We had a nice, truly friendly chat with the director today.  She just shook her head, apologized, said the aide absolutely should have helped, that Mom didn't do anything wrong ... and remarked with surprise that it just seems that it keeps happening just to Mom.  A mystery.

Eeyore Roberta, with her personal rain cloud that follows her.  I'll bring an umbrella.

Dementia and Alzheimer's

The last time my mother went to her regular physician was just before the move around February 1.  She needed a checkup in order to be admitted to the nursing home. The visit was routine - heart, lungs, eye, complaints.  I've been increasingly lacking confidence in this doctor, but have kept seeing him, for now, since my mother loves him.

As we walked out toward the check-out desk, I saw the doctor had written, "Alzheimer's Dementia" as a diagnosis.  I didn't turn around to question him or argue, as I was eager to leave. But, I just don't agree.

I do accept that my mother has a measure of dementia.  She forgets words, or what she had for lunch. She occasionally forgets names - but she does not get confused about who someone is, and, honestly, she usually remembers more names than I do.  She is sharp and discerning about when someone is treating her well, or badly.  She can describe incidents or issues. She does crossword puzzles when she wants to.

Is she occasionally fuzzy?  Sure.  But more often, she is acutely aware and oriented.  She can be rude but also funny and wry. She is both sarcastic and engaged. She has curiosity and is interested in her surroundings - "What are those people doing over there" (going onto a walking path).  "When is the first day of spring this year?"  (today).  I took her along with a group of mixed-aged friends going to the wonderful Toy and Miniature Museum in Kansas City yesterday, and she loved the outing.

Does it matter whether her records read "Alzheimer's dementia" versus "Dementia".  I've honestly wondered.  Am I wrong to try to get her new doctor at her new assisted living facility to adjust the diagnosis?  Does it matter? 

I really want to say YES!  Of course it does!  Not entirely because I feel protective of her, nor to imply any lessened risk to her future - or of any potential risk of my own possible Alzheimer's. And not entirely because "Alzheimer's Dementia" implies a diagnostic precision in the cause of and type of cognitive loss, one that I don't think she carries.

But I think a diagnosis of Alzheimer's carries an assumed way that a resident in assisted living will need to be treated - a way that is not matching what my mother's needs are.  And it implies an impending inability to sustain residency in an assisted living facility.

At least, that's my excuse for wanting to clarify the diagnosis.  And, I'm sticking to it.

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.

Settling in, both of us

Mom is settled in, and truly content.  She is being taken care of, the aides are helpful and positive, and the residents are friendly.  Mom actually has actually engaged in some activities, and enjoyed them!  The food is good, life is peaceful. 

During this past week, each day I've brought more things - purchases, or, from my garage, things that I'd earlier removed when she moved to the smaller space in the nursing home.  I've been putting up pictures, arranging clothes.  My sister came to visit, and we found a used dresser for her clothes.  I really think she's 90%  'done'.  

Of course, she constantly says she's about to die, as she's said for three years.  "Don't buy that large package of batteries - just the four-pack - since I won't be around long enough."  She resisted buying a dresser.  

But overall, she is content with her home.  

And I'm going to start taking a couple days off each week from visiting her.  Today I have all day at home for my own needs (prepping my house to sell it as soon as we can get it ready).  And I know she'll be OK.  That feels stupendous.  A day without a "Mom Run".  Taking care of myself.  Cool. 

A Disney day

Today feels like a true Disney day.  The sun is shining, the birds are singing, all's right with the world - with a nod to Robert Browning as well.

Yesterday, the day was dismal - rainy, cold, lightning and thunder.  I had acute bronchitis, with a spot on my lung that looked like possible pneumonia.  I had chills, fever.  My doctor warned me to stay away from my mother and go home to bed. 

But it was move day.  Nuh uh, doc.  Gotta go.  

Equipped with hand sanitizer and, yes, a mask, I went to work.  Got her physically moved with a few essentials (sheets, blanket, her nightgown, cookies, walker and wheelchair), before lunch.  Hospice moved in the hospice bed and her oxygen. 

Then went home to wait for the second shift.  

My son Kelly and his brother-in-law Chad came at 6:15 that evening.  Put a few things in the truck from my home (bouncing some things back to her that she'd already passed to me).  Then, off to the old place to pack up and move her things.  We got to the new place about 8:45 to find her in bed.  After we unloaded, I whirled around, got things out of boxes and set them out - just out, anywhere.  

She looked so peaceful and content, happy to have a safe space. A home.  And now, her move complete, I can stay home until I'm better and not contagious. 

Today, the sun is shining, the birds are singing, all's right with the world.  

happy happy...

I took Mom to lunch at her new place.  She won't move in til Friday, but we had an advance peek.  The apartment had just been vacated, so she got to see.  The rooms are a bit smaller than her old assisted living place, but since we just got rid of almost all of her furniture, it works out well to have less space to fill up.

The people were lovely.  Elsie agreed to sit with us at a guest table, and though she was pretty quiet, she made an effort to welcome Mom.  Joanne met us in the living room and was funny and friendly.  Mom actually acted like she might play bingo or Rummicube - she liked the people and seemed like she'd be a part of the community.

There were just 28 people in the dining room.  It was peaceful.  People were served food hot, and each table was served about the same time so no one had to eat alone. There was friendly, quiet chatter.

After the meal, we went to sit in the living room, and found a man there. Turned out he was the cook, Mike.  He was in his upper 40s, from Boston, and really funny.  Charmed Mom.  Spent a good part of his career owning restaurants, then came to work for this place 3 years ago.  Loves it.  Recognizes he brings people the last meal they will ever eat, and takes that privilege/responsibility very seriously.  Told Mom she needed to tell him how she likes food - oatmeal with brown sugar, eggs scrambled, dislikes mashed potatoes.  Makes salad with romaine and spinach, not iceberg. Though he's Boston Italian, he has learned how to make meatloaf and Midwest type dishes.  He's a smart-aleck and funny, but respectful. Delightful.

And there's something so comforting, so 'home', about being in a place where the food is welcoming, ample, warm, and familiar.

She repeatedly asked why I didn't find this place three and a half years ago, before she even got into her previous assisted living.

We left content and excited.  Can't wait for Friday.  Will be a challenge ... but totally worth it.

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. 

New hope, but with reality

Mom and I are both eager to get her in the new facility. It looks wonderful, peaceful, friendly, caring, competent.  The best recommendation is a hospice nurse who gave it HIGH marks ... and she knows the place well as well as seeing the real life there.

She gets to move in early, this Friday Mar 4.  Her room will be quite close to the center, limiting the amount she has to walk.  She goes back to a small apartment vs a glorified hospital room, though we need to go retrieve some of the furniture that we distributed.  It will be so much better.

But I also know there will be problems.  Mom will have problems adjusting.  They will make errors, and we need to anticipate a certain amount of imperfection.  It more than doubles my commute to see my mother in my usual daily trips, and I'm not sure whether I may just need to beg off occasionally.

We can be excited, happy, relieved... but we can't expect an idyllic situation free of any frustrations. Realistic, but content.  Sounds good to me.

Tick, tock, tick tock (for two weeks...)

We got an estimated move-in date of two weeks from today, to give the previous resident a week to move out, and to give them a week to prepare the rooms.  Mom is just desperate to get out of where she is, so she can feel safe, welcomed, secure.

Every day, problems continue at her existing residence.  Today they admitted they have lost her beloved quilt. I can't even recount all the problems ... cold food, tasteless food, long wait times for call buttons, tripping hazards and safety issues, bare mattress for a half-day (when she was napping), lots of lost laundry. There is just an unending list of problems, some serious, some petty, and all chronic.

I honestly don't know how this place gets by with it.  I have complained at all levels - to individuals, to the unit nurse, to social work and nursing departments, and to the director of nursing.  I've been promised 'investigation', but have not received any further communication in response. There are still stupid errors and neglect that just keeps happening, even though they know I'm there every day and will complain.  So, I choose to not continue to complain - it is clear that their service will not improve further, and I don't want her to receive any repercussions or negative treatment in the next two weeks.

After she moves, I will have more to say, both to them and likely in some other more public forum, such as a web review.  I feel sad for residents that have no advocate, whose family just dumps them there and rarely visits.  They have no voice, no advocate, and surely suffer the same.  Or, maybe they're just used to neglect.  Sad.

But - woooo hoooooo - she will be truly in a 'home' soon.  Yes, they will make some errors, but surely not like it is now.  I am confident, I am hopeful.

Tick, tock ... but with hope

I went 'shopping' for places for Mom.

I chopped a lot of places off the list due to bad reputation, or low scores from Medicare site.

I found one, a nursing home, that used to be called the 'county nursing home' - but it is well-organized, pleasant.  Her room would be about the same size as her present one, also a semi-private.  But they seem to be better organized, more caring, more individualized.  They have 'neighborhoods' that are managed independently - she would eat with the same small group, be cared for by the same group of staff.  I learned that they pay their staff higher than other places, resulting in being able to keep the best people.  Plus, it's cheaper by a bit.

Then I hit pay dirt.

I know a hospice nurse who told me she has several clients in another place she likes - but it's at the assisted living level rather than a full nursing home. But she said that this place 'goes the extra mile' in helping with ADL's - activities of daily living. They would help her with her almost complete incontinence.  They would wheel her to her meals, if she felt too weak.  They give showers.  They have delicious meals.  They have homey pictures of residents around. They are in a wooded area in the midst of suburbs, but it feels peaceful and like country.

This is where the hospice nurse would go if she needed it.

Plus, she would have her own apartment - a separate living area (with kitchenette), a bedroom, a large bathroom, closets.  Not a glorified hospital room (as in nursing homes).

Plus, it costs less than her former assisted living home (by more than $1,000/month), and almost half the nursing homes.

The downside is that it's farther for me to drive, but it's do-able.  And, if her health worsens, she may eventually need nursing home care (though she is on hospice and has end-of-life wishes to not receive extraordinary measures, so maybe she could just stay there - may depend on regulations).

And they have a room coming available in the next weeks.

Now we just wait for them to come assess her to make sure they can accept her, then wait for the room to open up. But I'm so ... content ... that she'll have a place to call home, where she feels safe and cared for. My heart is light for the first time in weeks.

Tick tock, tick tock.

The last straw

I have chronicled the deficits at this nursing home.  I have complained to the director of nursing.  I have complained to staff.  I have been pleasant but firm about providing my mother good care, but have continued to see problems in this place.  And tonight was the last straw. 

Fecal matter on her sheets.  

How long has it been there?  The nurse saw it and was horrified, and said that their schedule is to change sheets 'when she gets a shower'.  Since the nursing home only gives her a shower once a week (on Sundays), and hospice gives her a shower twice a week, it is presumable that this could have been there since Sunday.  

After she said that the sheets get changed when she gets a shower, I said, "or if there is fecal matter on them, right?".  She said, yes right.  

Also, it shouldn't even happen.  We have hundreds of 30" x 30" bed pads, thanks to hospice over-ordering them.  Her old place always always had one on her bed.  I'm desperate for them to use up these pads, since they are clogging her storage.  

Snap.  I'm done with this place.  

I toured one of the other nursing homes in town, a nice bright one, warm and friendly, and considerably cheaper.  Respectful of residents.  Surely not perfect, but ....  I believe it will be a vast improvement. Her name went on the waiting list today. 

It's funny, I'm a practical woman.  If only her existing place was a great bargain - I could put up with feces on the sheets maybe, or slow service, or pee left in the bedside commode, or my having to remind them about every little thing.  But ... not at premium prices.  Nuh uh.  

Snap.  The straw just broke the camel's back, and I can't wait to pull the trigger.  I'm done. 

Still on the fence ... leave her there or not?

We met with the director of nursing, and aired the lengthy list of issues that we had with the nursing home where she is staying. They were concerned, clearly, and promised to take steps to improve the deficits.  And, she said that Mom is not using her button to call staff needlessly or excessively, which was good to hear.

But are her promises enough?

The next day, her pants had all disappeared.  Every one.  I went down to laundry's lost and found, and went through a double-mountain of lost items, and found at least a dozen items of hers - including some that were clearly marked.

And the staff was snippy, possibly in retribution for her/our raising issues.

And the shower room was strewn with other resident's dirty towels when it was her time for hospice to come in to help her.

But, at least, for once, her oxygen was not empty.

Mom says she's getting comfortable there.  Do I leave her there, hoping that status improves, and that they 'get used to her preferences'?  Or, do we move her quickly before it becomes even more traumatic to move a second time?

And if we move her to another nursing home I've researched with an excellent reputation, will they have similar issues?  It's impossible to research all the potential problems.

I honestly don't know.

Abandon hope all ye who .... ok, maybe that's a bit strong ...

What pushed me over the edge? What was the straw that broke the camel's back?

Maybe it was yet another time when Mom's oxygen tank was on empty. Or the two full, warm opened cartons of milk left til the next day.  Or the poopy laundry left on the visitor's chair and on the floor. Or issues with chaos at meals. Or the nighttime bedside commode left full of urine during the day.

But ... I'm ready to look for another nursing home. Shopping around, again.

This facility was supposed to be so good - we are certainly paying premium prices. And there have been kindnesses to her. And there were explanations and justifications from staff about issues I've raised. But there have been a series of dismal failures, explanations or not.  And I'm very close to moving her.

In addition, she is really unhappy with the size of this place.  She went from a community of 32 maximum residents, with 2-3 staff at a time, to a community of 240 residents and innumerable staff flowing namelessly in and out of her life.

I think it's not a good match.  Very frustrating, very disappointing. Starting over, though perhaps with better results. Sigh.

Misery loves company

Mom is miserable.  She desperately waits for my daily visit.

She is frustrated by the apparent lack of a fixed schedule.  In Assisted Living, the meals were precisely at 8, 12, and 5PM.  Here, with a larger population and varying needs, people come and go as they wish during open meal hours - some might say it's more flexible, but to my mother, it's more confusing.

More staff work at this larger nursing home than worked at her former facility, and she is saddened to not have as close a connection, to not be able to call them all by name.  They just flow in and out of her room, a river of helpers but with less connection, generally (except for the few that have shown particular interest).

She needs more help now, perhaps because she got sick with a cold that weakened her as soon as she arrived, or because she is overwhelmed by the change.  Her continence issues have worsened, though they kindly have helped her.  A couple of days ago I arrived to find her sitting in her chair in a light summer nightgown and with shawls on her lap and shoulders, after she blew through all her pants.  (I've since bought her a much larger supply of pants that fit her.)  It was so sad.

The dining room is further away, and walking to it from her room at the end of her hallway is more of a challenge than before.  So she must decide if she needs to have them transport her in her chair, or, if she's going to try to walk.  Yesterday, she decided to walk, but gave out midway. Someone brought her wheelchair - but then she had a low-blood-sugar incident.

But there are also kindnesses.  Sheryl, the aide who stayed a bit late on her shift to do Mom's nails.  Mary, who patiently helped her during her diarrhea episodes.  The unnamed woman who saw her having trouble walking, and got her chair.  The staff who come to visit to offer activities. The hospice folks who provide stability and support.

Mom is back to talking about wanting to die, NOW.  She says she won't need the summer nightgowns because she'll be dead by that time.  I (again, again, again) remind her of the preciousness of life, that she needs to find at least one thing each day to make someone else's life better.  That she needs to live fully each day of life that she has.  She nods, says yes, you're right... then says the same thing the next day.

And I continue to look for things I need to learn about this situation, to become more whole myself, while I have this privilege/duty in my life.  Today, I'm too overwhelmed with the situation to have perspective, but I continue to seek it.  I hope time helps me find the insights.

(I'm not even going to re-read this to edit it.  Just too... tired.) 

Mom has moved to the nursing home

Mom has moved to the nursing home.

Mom, Marilyn and me

Ah, the passive voice ... "Mom has moved".  Doesn't begin to describe the chaos and labor of the last week.  Before the troops came Friday, I had been sorting, pitching, organizing for a week.  On Friday afternoon, my brother came from a distance on a business trip, and happily was able to pitch in Friday afternoon and the weekend.  My sister and her husband came from 4 hours away and arrived Friday evening, and rented a U-Haul for the move as well as did a tremendous amount of work all weekend.

During the work, we largely ignored Mom Saturday as we went over to her old place at the assisted-living home.  We had boxes for each of us three kids ... sometimes welcomed items, sometimes begrudgingly accepted.

There were piles and piles of things that we just had to send to the trash - the detritus of her life but meaningless to us - such as my father's obsessively copious notes from a 1980's trip to Europe (what was the daily weather, what photos were taken exactly at what locations on each day, indexed by 3-4 different sorting schemes).  Expired food. Shoes that were badly worn.

The shoes touched me.  I recall from a book, The Year of Magical Thinking, that Joan Didion (the author and then a recent widow) was horrified at the idea of throwing away her deceased husband's shoes.  Her irrational thought was, "what if he comes back needs them?"  As I pitched or donated her shoes (pretty, delicate heels, etc) it just felt so enormously sad to think that she wouldn't ever be that woman again.  Same sadness with her art supplies - she's done with those, and off they go.  (Note to readers of this blog - we did bring over to her the pink dresses for her to just look at and remember better days....)

And there were piles for charity donation.  Usable shoes, clothes that no longer fit.  Furniture that was not an 'heirloom'.  Dishes.  Piles.  U-Haul loads of donated items.

Mom in her new home (with my husband on bed)

And of course, the piles of things to go to the nursing home for Mom.  We moved that over, and carefully found places for everything over there in the small area that is now her home.  Her favorite red chair, a chest, a bedside table. An electric bed from hospice, and her wheelchair and walker.  It all fits and feels homey.  Her 'Sleeping Fisherman' painting on the wall made it instantly more homey, more her own Roberta space.

This week I will work on small details like putting more photos on the wall, darkening a too-bright window, changing her mail.  But mostly it's just helping her feel at home, really at home.

An easel and a pink dress

As I went through some closets with Mom, to determine what gets moved to the nursing home, some things brought particular grief.

An easel.  It was just a metal, adjustable easel.  But my mother is an artist, a water colorist, and when we looked at the easel to decide whether it moves, it brought a flood of sadness.  Saying "no" means recognizing that her artist days are done - at least, the productive, "I-can-go-anywhere-to-paint" days are done.  Yes, she could put paint to paper in a group activity in the nursing home, but for someone who painted at the ocean, in the Southwest, on vacations ... it is a terrible loss.

And the long pink dress.  I don't really know what in her life it connected to, but she felt so sad to think that she will never need that again.  That the 'dress-up' days are over.  That she won't feel special and pretty like she did before, when she was a beloved wife and socially active woman.  Miss Topeka, 1937.

There were other small things - scarves and fancy purses, even underwear that she no longer uses now that she needs disposable briefs.  A hundred things that say her life is so reduced that it now fits into a semi-private room in a nursing home.

I've been Miss Positivity, reminding her that the easel only reminds her of a part of her Life, that the Life she's enjoyed is the reality, the joy.  But, I do get it, I understand.  Touching the easel, the pink dress, the fancy purse - brings back a spark of the life she enjoyed.

It's time to grieve that loss.

Persistently Positive battles Deeply Depressed

I'll just start out by admitting I can be obnoxiously positive.  It has served me well in my life, to seek out the life-view that is hopeful, expecting good things.  I don't welcome negativity or hopelessness.  Maybe it's because I lived in a profoundly depressed state for about a decade, receiving professional help.  I dug myself out of that grim time by forcing myself to seek life and health even in tiny bites, tiny steps. Little by little, I'm doing really well for a decade now.  There it is, I've admitted it (in this public blog that perhaps no one even reads... like screaming one's secrets in an empty forest).

So, returning to Mom's move to the nursing home...  I terribly depressed.  I know this feeling, and I don't like it.

My sister told me she is also feeling this awful sadness.  So, I may be sad but I'm not crazy!  (smiling...)

Why is this overwhelming my positivity?

I think it's because the situation just ... merits sadness.  It's a sad thing.  It's a really really sad thing, to acknowledge that my mother needs skilled nursing care. That she is 'disappearing', now even more so, fitting her life into a shared hospital room basically.

I will go see her today to pack some things, in anticipation of her being admitted tomorrow morning.  Her official move day, tomorrow.

Up til now, I've been obnoxiously positive to her, helping her view the change as a good thing, that she will be fine, that she will make a new home there and be happy.  But, I will also tell her how sad I am to her.  I will tell her I've been crying for her loss.  Then I will warn her that I will continue to be positive, confident that she WILL find contentment there. And I do believe that.

Still, it's just so deeply sad.

Yes, a move to a nursing home.

Yes, mom will move to a nursing home, on Friday.  She is still not 'believing' that it is necessary (not believing that she has the incontinence issues, not believing that she has refused help) but accepting.

We visited it today.  It is bright and clean (I guess) and pleasant.  She will have a window, and share a room with Carmen (who promptly fell asleep in her chair after we introduced ourselves).  Mom will have a several pieces of her existing furniture, plus a hospital bed, plus stuff on the wall (photos, her art).

I know she is not thrilled, but is accepting - but what surprises me is my own depression over this move.  It's really so sad.  I know I'll need to do some work to support her (take her to the doctor, change her address, etc) as well as to support her emotionally (visits, pep talks, walk her around). But you'd think this was happening to me. Personally. I'm depressed.

I'm also just getting back from a vacation where we are shopping for "after-she-dies, where-do-we-go" locations.  And I realize she could continue to survive another year, maybe two.

When she first moved here, I recall saying I thought she'd survive maybe 6-9 months.  That was 3 years ago.  Over 3 years ago.  I'm not saying I wish her ill, or even just that I don't appreciate her... just ... we don't know.  We don't know.  And a commitment is for however long it lasts.  Yet - my husband could retire today, and I am already 'retired', courtesy of a couple of layoffs.

I'm the horse in the gate, ready for the gun to go off.  I'm eager for my next adventure in life, but realizing that my commitment here is continuing.  I don't resent it, exactly, but ... when we hear the gunshot, I can promise you that we'll move quickly.

But I remain in a crazy bifurcation - on one side, prancing, antsy, ready to go go go - yet simultaneously creating a new stable routine for my mother, with my daily visits to a nursing home, a new long-term location, a new set of faces to learn, new staff to greet and befriend, new residents to get to know.  New dinner-table, new dinner-companions for Thursday nights. A new place to sit and be ... quiet, be ... still.  And me, prancing, muscles twitching, ready for the next Big Adventure.

Sure, this is about my Mom's move.  But it's also about my ... delay.  My waiting. Until... after.

Reality sinks in...

I visited with the unit manager at Mom's assisted living facility. She assured me that they would do all they needed to for Mom's care, but that her incontinence (and occasional refusal to accept help) makes this the time that we need to move her - or else bring in someone to help her daily so she could stay there.

So, Mom's name is on the waiting list for the nursing home.

My sister mentioned the move to our mom a couple of weeks ago, and we were both giddy with amazement that she took it so well.  I mentioned it again last evening before dinner, and she just then 'heard' it.  Really understood.  She was horrified, saddened.  Shocked.  She repeatedly said she doesn't believe it's that bad.  We brought down the unit manager and she explained it, and mom again repeatedly said "I don't believe it" (that she refuses help with her soiled brief).  Then at dinner she said they were kicking her out.

We continued the conversation after dinner, and I suggested she think about HOW she phrases it when she shares this with her friends there.  Rather than saying "They're kicking me out" (which is ungenerous and untrue), she could say that she needs more care.

She is still reeling, but when I left her last night, better.  I suggested she fully enjoy the 'todays' she has remaining there, not stressing about any future move, not borrowing tomorrow's anxieties (as Mt 6:33 says).

Not sure what I'll find today, but big changes ahead.

A drama...

In the first half of January, I took a 16-day vacation with my husband to South America, and I just got back yesterday afternoon.  It was wonderful and fun and a huge change-of-scenery.  My sister Marilyn was in charge of being Mom's 'person' during that time, and though she lives a few hours away, I was grateful and confident that all would go great.

During that time, the hospice nurse called Marilyn to say Mom was "sitting around all day in her feces" and refusing help, and that due to odors she would need to move to a nursing home facility.  Marilyn handled it great from her location, on top of a busy teaching job, but it was stressful.

And Mom said it really wasn't that bad, that the hospice nurse was over-stating the problem.  She absolutely doesn't want to move from a three-room apartment to a two-person hospital room (basically).

And at Mom's present assisted-living facility, the unit manager said it wasn't urgent and that they were expecting to wait until I got back to handle it.  It appears that the hospice nurse over-reacted.  I wonder if it is just a matter of my mother being unable to adequately clean herself after a bowel movement - understandable with limited range of motion and poor balance.  Plus, let's just say that Mom has never been a slave to cleanliness. So I'm sure the hospice nurse has a point, but I'd like to see if there are options available.

Anyway, I'll meet with them in the next couple of days to find out what's happening.  Poor Marilyn, having to juggle the drama from afar.  But, at some point, Mom will have to be moved, so this was either Step One of that process, or at least a dress rehearsal.