Glass half-full

I took my mother to her hometown, Topeka, Kansas, last Saturday - about 1.5 hour drive.  We visited her best friend from childhood, Mayme, who is still living there.  They delight to see each other, and laugh over their history, talk about names and stories from long ago.  Plus, Mayme tells me things like the fact that my mother was always late as a young woman - a fact that delights me when I am (too often) late arriving at my impatient mother's home.

I adore Mayme. I admire Mayme.  I enjoy Mayme.

This visit, my mother was in a wheelchair.  Mayme has difficulty with her knees, but gets around slowly without even a cane.  Mayme still lives in the same house as she has since I was a child and our families visited and we played in the park across the street.  We lunched, drove around the old neighborhood, and visited Mayme's husband.

Mayme's husband had a stroke some time ago, and is now in full-time nursing care, beginning to experience dementia as well.  Mayme visits him every single day, though she has no car.  She has a taxi come for her each afternoon, and gets home the same way after her husband goes to sleep. During her time there, she fixes his bed 'just right' after the aides get him into his wheelchair for a few hours.  She fusses with him, talks to him, or just reads.  She said that when she goes home each evening and reads some more, she can feel his presence in 'his chair' on the other side of the fireplace.

But - Mayme always has a positive attitude.  Always. She finds it. She fights for it.

She is grateful.

She giggles.

She is eager to see what's next, what's new, what's interesting.  She is curious.

Though she is 89, with many many challenges, yet she finds joy in each day. And, I believe, she will continue thus for some time.  Her glass will always be half-full - at least.

Boredom... inevitably part of end-of-life? Oh, I hope not!!!

I've continued to think about the previous post, "Dying of Boredom". I've wondered - is this just a natural (and even a helpful) part of the end of life? A willingness to just... let go? But I don't think it necessarily is that way, as I described previously. The people in a group home are a subset of elderly folks. There are others who are not in such a place will have a different situation. Surely some elderly ones out there are sitting in their own homes (or in their family's home) watching TV, utterly bored. But others may be caring for grandchildren, reading, going to lunch, cooking, gardening, volunteering. Engaged. Challenged. Interested in what's NEXT in life...


It makes me think of a book that my sister loaned me, Another Country, Mary Pipher, PhD (see Amazon, Another Country: Navigating the Emotional Terrain of Our Elders). It talks about the 'young-old' and the 'old-old'. In many cases, health difficulties may turn someone into an 'old-old' person, which may make it virtually inevitable to lose interest in life around oneself. But this book describes magnificently the differences between my mother's generation and my own baby-boomer generation. It is very helpful to provide insight into why an elder may be as they are. I recommend the book highly.


So, my own goal as I face turning 60 later this year? Stay among the 'young-old'. Improve my health. Be engaged. Be interested in what's next. I've moved over to a Spanish congregation and am mentoring and helping there with their challenges. I read, do puzzles, and am very very engaged in my community. (And my sister and I have a mutual pact to beat the other with a baseball bat if we get bored with life.)
.

Dying of boredom?

My mother received a visit from her hospice workers.  They were running some tests, and while they were prepping her, she chatted about hospice.  She told them that another man at her home is also using hospice services, and has been doing so for some time.  She said that the two of them often joke about which one will 'go' first - they call out to one another as they pass in the hallways, "Are you still around?".  The workers laughed nervously.. she has a rather dark sense of humor.

But I really think a big part of their attitude is just boredom.

I wonder if they are just 'done' doing things.  Or having goals.  Bringing meaning to life, to themselves, to others.  Maybe they ran out of 'life' before they actually died.

There are many many activities at her assisted living center.  For my mother, I visit daily. I urge her to go talk to others to cheer them up and help them feel connected.  She does talk a walk once daily down the halls to watch some gentlemen play pool - which is great. But she chooses to sit and watch TV for the rest of her waking hours.

Yesterday during our visit we picked up her crossword book - formerly a passion - and did parts of a couple puzzles together.  She enjoyed it ... but just for a bit, then she just set it aside, bored.

Marking time until she dies.
.

Tiny helps mean so much

Today I visited Mom and did a few small things... wound her clock, unpacked some supplies from hospice.  Filled her water glass. Adjusted her chair.  Nothing much - just itty bitty things that are hard for her now.

She was so grateful.  I was glad I can do it.

But it strikes me how tiny her world has become, that such small things can brighten her world.

An anniversary for me

Two years ago today (Mar 14 2008) was my last day in my corporate job.  I took a voluntary layoff to give me time to support my mother as well as to enlarge my time with my volunteer work and to escape frustrations of corporate life.

What a change.  I can't believe it's been two years.  Feels like six months, maybe a year.  But I haven't missed the 11:30 PM texts from my boss or long hours or stress.  And it's been nice to have a schedule that allows me to visit mom, as well as to live a life more in synch with my personal values and passions.

And while my income has been cut to about 20% - 25% of what it was before, the enjoyment of my life has been so much richer.  More meaningful.  I miss the financial security, but that can't possibly buy my life now.  Not by a long shot.

My mother had moved to her assisted living facility nearby about six months before I was laid off, so that means she has been here 2 1/2 years.  Wow.  I honestly thought she could only survive three, maybe six months at the time, due to her confusion and frailness.  She has stabilized - gotten much worse in some ways, gotten more stable in others - and my own awareness of how much someone can endure has deepened.

My support of her has gotten easier now in many ways, compared to that first year.  The many tasks associated with 'taking over' her life have dissipated - the facility orders and administers her medicines, hospice helps with many medical needs and supplies.  The business matters have reduced greatly - just a few bills to pay monthly, a monthly fax to insurer, occasional visits with financial guy, doing her taxes each year. Now it's the small daily things - pick up a bulb for the night light and yogurt, put on her toilet paper roll the way she likes.  Doctor's visits. And I'll admit there is some filing and some things that are yet to do.  But honestly, looking back two years at the blog, I can see the improvement in my situation - now. It's been a long haul but, yes, it gets better.

Doctors as entertainment

I swear, sometimes I think Mom thinks of medical complaints just to have something to do, someone to fuss over her.  

"I can't see TV.  I need to go to the eye doctor.".  And then I learn that it is actually on her new TV, she can't see the (now) much smaller text showing the channel she is on when she changes channels.  And she has had macular degeneration for years - while I'm sympathetic to how frustrating it must be, a doctor's visit can't give her 30-year-old's vision.  We did go to the doctor, she did have a slight change in lenses... but she has the same complaint.  

Over the last months she has had three teeth pulled because they broke off.  Recently she said she needed to go to the dentist.  I asked, why?  She said she didn't know - but don't we need to go?  No, you are good for now.  You have a routine appointment in a few months.  

A couple of weeks after hospice started, one day she was furious because she said she wasn't getting enough attention.  (When hospice services started, she had a series of 'get to know you' visits, so suddenly she felt 'bereft' to use her word.)  I asked what she needed ... 'oh, nothing, but I just am not getting enough attention!'.  I reminded her that many hospice clients are gravely ill with urgent, life-sustaining medical needs, and that she is really alright and is getting all the attention that hospice committed to her. 

It's not that I have a problem with helping her with real needs, or even with perceived needs (though keeping up with those needs does become challenging at times).  But there is a boredom in her voice, a restlessness that she wants a doctor's visit to solve.  

And then my own guilt - am I not doing enough to entertain her?  I already visit almost daily - more than anyone else in her assisted living community.  Oh well, brush it off.  She's just tired and lonely.  And it's each person's responsibility to find their own joy.  We chose that facility because of the abundance of activities offered and the sense of community.  If she chooses to sit in her room with her TV, it's not my responsibility to fix - nor is it an indicator for a doctor's visit. 

End-of-life wishes

Some time ago, perhaps six months ago, my mother and I had a frank conversation about what she wanted for the end of her life.  How did she want it to play out?  She had carried in her purse an aged and tattered thing that she called a "living will" but which really was mostly about her funeral.  She needed a living will, and we needed to talk.


I was prompted by hearing an NPR radio program about the very low rate of a successful outcome if someone is defibrillated. (I wish I could find the NPR article to share...).  TV shows use defibrillators with great frequency, and the person virtually stands up and walks away at times.  In fact, as I recall the rate at which people actually leave the hospital and return to their previous level of health is something like 4%.


Wow.  And even less likely of success on an 89-year-old patient with heart disease and diabetes.


I sat down with my mother and talked about the study, and asked her what she wanted.  She said she didn't want any 'heroic measures' - she repeated that phrase.  She said she was ready to die.


But what does that mean?  And how do we ... make it happen? or rather, make sure that certain unwanted things do not happen?


We went to her physician.  He listened, and asked some great questions.  What about all the pills she's taking - does she want to stop taking the medicines to help her diabetes, blood pressure, atrial fibrillation, and on and on?  No, she said she is not ready to throw away her pills to hasten her death.  On the other end of that spectrum, does she want every and all measures to forestall death? Nope.


So, in between those extremes are many other questions.  What if she is having chest pain.  Although she doesn't want 'heroic measures', what about pain medicines?  After a number of clarifying questions, we are now clear that she would like to have 'comfort measures' but no measures purely to extend life.


So she filled out and signed the Living Will documents (provided by our local hospital) and I distributed it to all her pertinent doctors and put copies in her purse, my purse, and gave to her assisted living center.   But in addition, I recorded her talking about her wishes in my cell phone camera. If needed, I will play it for her doctors if anyone needs help understanding.


And of course, she has every right to change her mind right up until the end.


Now every time we consider a new health challenge - congestive heart failure all the way to new glasses.  I need to ask myself and her - is this consistent with decisions she has made? We talk about it each time. Do we choose to go to the doctor for this or that new symptom?  Is this comfort-enhancing vs life-extending?


By the way, I found a great piece on the subject when looking for the NPR story that started this journey, called What To Do The Next Time Dad's Heart Stops, by Richard Knox, at http://www.npr.org/templates/story/story.php?storyId=105593750.  Still can't find that other piece but I'll keep looking. 

So, I will sit with her when death comes.  Hold her hand.  Let her feel not so alone.  Make sure she has the death she wants.  

Negatives and positives ... both are so very real...

I'm having quite an internal reaction to my last post (where I describe why caring for aging parents can be so fraught with negative emotions, and why it's not really comparable to caring for children).

My reaction is partly embarrassment at having said it so directly.  But, I am also reacting because it doesn't tell the whole story.  I need to shine a light against that darkness.

I'm sure there are many whose distaste for their imperfect elders makes them do the minimum possible to help their parents, or to support them with thinly veiled resentment, or who abandon them altogether.  We even read of elder abuse, those who have victimized their parents physically.  Horrible.  Horrible.

On the other extreme, there are those who have a wonderful tender relationship with their parents, and who treasure every moment even if it is cleaning up a messy bathroom. I congratulate these blessed folks.

But where there is some degree of difficulty or even distaste for caring for elderly parents, is that the only thing that we see? That I see?

I started this journey without knowing.  Without knowing that there are such nice things I get out of it, like learning how to sit quietly. How to be OK with not having anything interesting to say. Finding out that there ARE little moments of laughter and silliness.  My mother has more of a wit than many of her contemporaries and it's fun to see aides or others enjoying her humor (usually, unless the barbs are too sharp).

This time has also allowed me to have a loving relationship with my mother, against whom I have held considerable anger (not unfairly) for many years.  We got to refresh, to reboot, even to restart.  And I'm so glad and grateful to have had this time.

I have been able to glimpse into Elder-World, and make decisions about how I want my old age to be.  I am determined to retain rich friendships and stay intellectually active.  I want to be fully alive and contribute to others until my dying day.

I think other posts have talked about other positives.  I just wanted to put that other darker post behind me.  Shudder.  That wasn't all there is, and I needed to say it.  There is also laughter, joy, purpose and even fun.  I'm grateful for this time, even with its difficulties.  I'm grateful.
.

Why do many of us adult children feel (mostly) negative about caring for elderly parents?

Is that just the dumbest question? Is it (presumably) so painfully obvious?  Or is there more to it?  (And, if you don't have negative reaction to caring for your elderly parent, then I truly congratulate you.)

Is it fair, is it equivalent, to compare our parents' care for us when we were children with our caring for them as elderly parents?  Is it the same?  Are we merely 'giving back', tit for tat?

In the sense of familial duty, yes of course it is comparable.  They gave us life.  We owe them respect, dignity, honor.  Absolutely.  It is the right thing to do.

At the same time, we may have feelings about performing that duty that feel ... uncomfortable. I've talked about those feelings (resentful, impatient, frustrated). We are not proud of feeling this way, but it does REALLY feel quite different, my caring for my mother versus raising my daughter.

Why?

My sister's friend shared the essence of a newspaper article on the subject of caring for aging parents.  The article said the difference between caring for elderly parents versus children is that no matter how well we take care of elderly parents, they keep getting worse, unlike with children who grow up and become independent.

Maybe. Maybe that's part of it, anyway.  But I really think there's more to it.

Children bring hope, laughter, and the future.  Children allow us to dream. They touch a part of us that remembers our own youthful days.  They are innocent, clean slates. They are forever.

Parents... they bring (to most of us anyway) baggage of past failures - theirs, ours. When we walked away from home some years ago, we set aside unresolved issues - until now.  And now they are sick, needy.  Confused. They have awful smells and physical needs - needs that will only grow. They are confused and irritating when their own frustration or demands or moodiness hit us in the face when we are least prepared for it.

Children are fresh, new and hope-full.  Aged parents are damaged, pained, and used-up. 

Plus, the demands of an aging parent coincide with a time in our own adult lives when we are trying to finish some of our own accomplishments, help our own adult children, strengthen our own marriages, meet our own various needs in the last phase of our career before we retire. We're tired.

Further, as we look at elderly needy sick parents, we see ourselves in just a short 25-30 years to come. Who will bring us flowers, toilet paper, wine, toothpaste, Advil?  Who will hold our hands at the doctor's office?  Who will care if we live 'well' - or, if we live at all?  Can we afford our future? Will anyone even notice our existence?  Seeing our parents can be frightening, terribly uncomfortable.

As I'd mentioned before (and as others have secretly echoed) we adult children have horrible thoughts that we know they will die soon and that we actually hope for it to be sooner rather than later.  And the guilt and shame of that reality is just awful.

Honestly, my mother feels the same way, and says she is ready to die.  Waiting to die.  Maybe even yearning for death.  I'm aware of no particular purpose she serves except to boost Dr Phil's ratings by one viewer a day. She and I have nothing new to say to each other. There is no meaning to life that she is somehow holding back from sharing with us. She's marking time, waiting.

Of course, there are some nice moments we enjoy together, and I really work toward supporting her in a positive joyful way. But overall, there is the waiting, and secretly hoping, for the end. But still, it sounds like an awful thing to say, that I am looking forward to ending this.

So, there are some superficial comparisons that can be made between aging parents and young children.  But the real differences are complex and layered and uncomfortable and so very sad.
.

About the title of the blog, "As my mother slowly disappears"

"As my mother slowly disappears."  Have I explained that title?

I have been struck at the changes in the size of the footprint of my mother's life.  She, as do all of us, had a big footprint in her adult life.  Owned a house. Cars.  Travel for pleasure, travel for family.  A job. Influence in her community. Children. Grandchildren. Edited some community newsletters. Hosted dinners.  Attended Elderhostel.  Was active, engaged.

And over the last 20 years, her footprint has been diminishing.

Her husband died.  Whoosh, in a heartbeat, her life footprint diminished by half.

After a bit, the house then went. Sold.  The possessions in the house gone, as my sister and I and my niece (representing our absent brother) pawed through boxes and piles.  At first, we were happy to have this or that thing; toward the end, whoever simply let their gaze linger too long on an item was 'stuck' with it, as we tried to avoid enlarging our own piles.  But the Stuff had to go...

... to get her into an apartment.  She stayed there for maybe 5 years.  They provided her dinner meal; she only prepared breakfast and lunch in her tiny kitchenette.  Visits from family sleeping on the sofabed. Until fires in her kitchen and other health risks meant she could no longer live there.

More sorting through the remains of a lifetime. More reducing her footprint. More passing along to family.

Next, she moved into Assisted Living.  Two rooms. They provide three meals. Housekeeping.  And during the last years, she has added services including administering her medicines, giving her showers, helping her get around. Hospice even helps her urinate (with a catheter).

Her life is sitting in her red chair, watching TV and waiting for Dr Phil. And for me.  And waiting to die.  To disappear.  Poof, and she's gone.

Then us kids come in, sort through whatever remains, and then she exists only in memories and photos.  She takes up no space at all.

Disappeared. Gone.

I kinda like those old folks

I must say that I rather enjoy being around the old folks in mom's assisted living center.  A few are just too far inside to reach, but most are reachable in some way.  It's kinda cute to see the parade of folks with walkers, trying to make fun 'crashing' into each other, talking about putting on their blinkers as they pass on the left, etc.  There's Dean and Bob and Lois and Margaret; Evelyn, Betty and some nameless ones.  Elegant and outspoken Mildred and her feisty friend Geraldine.

I always try to speak to each one, whether they respond or not; most do.  I have a bright smile and they seem happy to see me.  I want to show personal friendly interest in each one - I think it helps my mom, too, when she is rude or abrupt.  Maybe they'll be more forgiving of her attitudes if they remember her daughter is nice to them.

When I've come in to teach a genealogy event, we get few attendees but they are eager to talk about what they've done and where they've been.  It's been nice to hear their stories, though sad to know that their own families may not care much.

I've overheard them talk about me (there are no secrets in nursing care as too-loud voices carry), and they say nice things that make me feel good. It's an easy crowd to please - an ego-boost!

There's something about really looking into their eyes, with a smile and a greeting and sometimes a conversation.  I used to be like most, looking beyond them, a little nervously, a bit uncomfortable.  But now I'm enjoying my little visits with 'the ladies' and the men there.  

Opening up...

So, I've kept this blog as my own secret place to talk to the void.  No one has known about it, not my sister, not my husband.  Just me.

And it's time to share with my sister.  Welcome Marilyn!  And, if Marilyn wants to share it, welcome, oh friends and family of Marilyn.

I wonder if I will write more or less or differently if I now feel like I have an audience?  I don't know if it's good or bad - just different.

I've found another blog I really like:  http://midlifemidcape.wordpress.com/.  A man writes about his caring for his father in his home.  Of course, that's different than my situation, but I have enjoyed reading it.

And I wonder if I might do a blog (a public, visible, public-service kind of thing, like for MONEY) about elder care.  Lots of us baby-boomers that may embrace some help.  Or maybe not.  Right now all this feels pretty ... close.

And marilyn and friends, I apologize for any unguarded comments or any blathering on or looooooonnnnnngggggg posts.  And Marilyn, let me know if there's anything I need to edit out.  When one is writing to the void, one speaks frankly.

I love you, Marilyn.  You are loyal and loving and supportive.  Even if you can't be here to lend a hand with daily stuff, your words bolster and comfort and balance me.  THANK YOU.  I love you.

Honestly - how do I feel about all this?

I had an interesting chat session (AIM) with my sister Marilyn (oh I really love and appreciate her support).  (I have never told her about this blog, and I think it's time.)  And, the chat session brought up something I haven't dealt with so much here ...

How do I FEEL about this whole Mom thing?  About ... Mom?

I've written here in my secret blog about the frustrations of all ... this.  About being overwhelmed with tasks.  About resenting my mother's self-absorption. About just practical details of being an elder's 'person'.

But how do I feel about ... my mother?  About my life?

Honestly, I can't wait until she dies.  Is that shameful thing to say?  Well, there it is.

I want my mother to die.  To stop being so needy.  So craving of my presence.  Just to die.

I'm tired.  I'm done.  (sadly, no, I'm not done.  not yet)

Further, being really honest, we were never close.  She wasn't ... nurturing.  She has always been self-absorbed. Her own mother wrote in a diary that if she (my grandmother) was in some crisis, she (my mother) would finish her bridge game before she came. My childhood as I recall it was filled with my father's anger, my own fear and silence, with my father's rigid obsession with being perfect. I feared him and she never really was much of a presence.  I'm only glad he is already dead, and there is not a single day that I mourned him.  Or even thought about him or regretted his being gone.

I left home 3 days after graduating high school.  At 17 years old.  Moved to NYC.  Never looked back. My sister stayed another two years, and has been a loyal support to my parents for all these years. Marilyn has been there doing the routine boring support things for decades.

Now it's my turn to pitch in, and I'm doing it.  I'm doing it. 

And after I left home at 17 I found friends and nurturing and recovered from devastations I suffered previously.  And, I am really REALLY good now.  Many years of therapy, three (four?) hospitalizations and decades of great friends and a spirituality that has brought me tremendous joy and peace and... context.

But let's be really honest.  This is not a case of a grateful daughter giving back to a wonderful, nurturing mother.  This is a case of a woman choosing to take this on.

I hope this doesn't come across as my being some kind of a martyr.  I'm not.  Really. It's just my turn.

And, from a selfish point of view, I wanted the opportunity to develop a side of myself that I hadn't stretched as much. I had protected myself for years from having much direct contact with my parents ... by design.  And now it was just a good time for me to develop that side of me.  A giving-in-spite-of-everything-else side.  I have become strong, and I have learned how to say No, absolutely NOT, I learned how to feel like I was SAFE, now it was a time to CHOOSE to say Yes - not of duty (lack of choice) but of pure choice. Because I was ready. (I wonder if this makes sense.)

and if I'm going to do this, I want to do this with joy.  I choose joy. I want to find the positive side of it.  If I'm going to spend "x" amount of time, I may as well do it with gusto. With full awareness.  Without reservation (to the extent possible - honestly this all sounds a little.... much).   But I am really working at it, trying to stay in each moment, not resent the incursions in my life, in my schedule. To release 'outside' stuff when I walk into her building. Try to remember that old folks just want to gaze into the eyes of a loved one.  Time, gazing. Like infants.  And trying not to fidget remembering the things that I really wish I was doing.  Not to be coiled, ready to spring out the door when my time is up. Just allow myself to be in that moment. The joy of a Wendy's Frosty.  Of grapes. Of warm feet.  Of a good BM.

(and I do NOT remind her - as I sometimes wish to do - that she was a crappy daughter to her desperately lonely father, seeing him maybe once a year until he died in a urine-smelly nursing home). 

And I can be honestly say I've had moments when I've truly enjoyed some moments.  I've been surprised to reflect, "wow, I am really enjoying this moment, this laugh, with her".

She is grateful. At least once a week she remarks how amazingly lucky she is to have me.  She says "I couldn't have done this without you."  and that means a lot to me.

And yes, I am also very very aware that this is an enormous honor, a very intimate thing, to be called on by another human to be their 'person' as they face death.  Whether I was working for a complete stranger as a volunteer in hospice or doing this for my mother... it is something so very ... intimate.  Talking to someone about how they want their death to happen.  To be that person that someone else relies upon to ensure a death that doesn't offend or violate them.  Intimate.

But oh. lordie, I wish it would happen soon.  Her death.  And, I know from our conversations that she wants that too.

And, I am sad that when others look at us, they assume a wonderful history that has preceded this last era of her life.  I am sad, I grieve that we didn't have that, that she didn't give that, that I didn't get it.  I am not defective.  Our relationship was defective, and it is not my fault.

But I am just doing what I now choose to do, to be her 'person',  Until she dies.  Every new disease, new symptom, every fall she has, every weak episode, I wonder, is this time?  Is this her last winter?  Her last weekend? Her last Wendy's Frosty?  Will I get that call from her caregivers, "You need to come".  When will she die?

I hope soon.  Honestly.

Tedium, and, doctor visits

Life with/near my mother is either crushingly exhausting or simply boring, tedious.

We had a little burst of doctor's appointments last week - eye doctor and her primary care doc.  Her legs were terribly swollen (congestive heart failure, CHF), and couldn't pee, and trouble hearing.  Doc suggested going to cardiologist for her heart, but I reminded him we're on hospice and... if there's nothing to really create a real fix, and no pain to fix, then why go? So, we won't go.

Mostly now, it's tedious punctuated by bursts of drama.  Ho hum then some urgent care for congestive heart failure, then back to tedium.

We have little to say, but just sit together.  I try to come up with something interesting, but even that is unnecessary... she just wants human presence.

Another fall

She has fallen again, on Dec 31 in the evening. This time she was in front of her closet trying to rearrange some clothes.  She fell backward and hit her head.

Last time this happened, CLV called the paramedics and after they assessed her, she refused to go to the hospital.  I spoke to her, and she was coherent and seemed OK.  So, this time CLV didn't call paramedics (per mom's instructions). They called me and called Hospice. Hospice folks came out and assessed her and she was OK.

Over the last few days she has said she felt really really weak.  One day she said she had chest pains.  Yesterday I went to see her and she had been lying on her bed trying to get her pants on (she couldn't pull them up when she was standing); she got one leg in then couldn't manage the other.  She rang her button but no one came for 20 minutes as she lay there cold and frustrated.  She is just weak.

I still visit almost every day. We have little to say but it comforts her.

Saying "Thanks" helps so much...

I love my sister.  Here it is, a year, no, it's two years later, and she still unrelentingly expresses heartfelt appreciation for my efforts.  I feel like maybe I'm being egotistical for it to matter so much to me, but just having someone say Thanks means so much to me.

And Mom does say Thanks too.  She says it very nicely - often she says she doesn't think she could have done this without me.  Well, of course she could have ... Marilyn or Bob would have very willingly had her move closer, though their situations (in varying degrees) aren't as optimal as mine.  Or she could have stayed in Concordia and been cared for.  Still, her appreciation, her recognition of my contributions, also helps a lot.

"I'm being neglected..."

Somehow she thinks that being on hospice means she will have attention 24x7.

She keeps saying, "I'm being neglected" or saying whiney things. Just attention - more attention... more ... insatiable. She says rude things but with a smile like "I'm just kidding" (but rude) to the service providers.

I told her she is absolutely not being neglected. (She listened, and said, "you need to keep telling me that..." which is of course good but also a call for more attention from me...) She's getting all the attention plus some. Other clients of hospice have desperate situations - she doesn't.

More later.

Hospice

Wow - it's been over a year! Things eventually quieted down and created a routine.

But...

After a quick series of four falls and a one-week hospitalization, she returned to CLV much much weaker and more confused. The unit manager suggested we consider hospice.  And, she is now on the highest level of care in the assisted living facility. 

Called in hospice. We are now trying to fathom the tremendous help they offer. It's almost too much to absorb. Nurse Margaret, Aide Cynthia, LPNs Chalitha, Jo, Elsa, and more. Director Cathy. Chaplain Dan. Social worker Floydene. Doctor somebody. Along with the occupational therapist, physical therapist. And they're all coming in to introduce themselves and start their service in the last few days. Most will fade back into just monthly visits.

But wow they offer a lot of services -

• a special mattress (some kind of special air-moving thing to prevent bedsores for really sick folks);
• a hospital bed (goes up/down, legs up, head up etc).
• showers twice a week and/or other hygiene help.
• Transportation - they will take her places - 24x7 if she wants.
• help with meds (reviewing, ordering, and paying for some)
• do blood sugars a couple of times a week
• home visits by the physician, at least once at first and at some interval after
• medicines related to her terminal illness (which is congestive heart failure) - so her copay will be covered for that, but not for diabetes, for instance
• medicines related to her comfort - pain pills
• laundry
• volunteers to come sit with her
• briefs ("Depends")
• physical therapy
• other supplies and needs to aid with her comfort.

amazing. but wow... really overwhelming right now.

It just never ends - the doctor's appointments, hospitalizations, med changes and medicine orders and reorders. Assessments and physical therapy and home health nurses. Insurance companies - their premiums, their claims. And as soon as I think I'm caught up, there are new symptoms and ... new doctors' appointments.

She is grateful. My sister and brother are grateful.

but I'm just so tired. And - my life keeps getting put on hold. My severance pay will run out too soon, and I'm worried.

Dementia diagnosis - and long term care insurance claim

I've been fighting the insurance company to pay for her long term care in her assisted living facility. At long last, I think I understand the issue, or at least the reason for the delay.

My mother's insurer, Bankers Life, will pay a set amount for her long-term-care if she either (1) has deficiencies in at least two of the six "Activities of Daily Living" (ADLs - bathing, dressing, eating, transferring, toileting, continence, and something else), OR, (2) has cognitive impairment. Mom has some trouble with ADLs, or, what are called Instrumental ADLs (more minor activities that contribute to the ability to live successfully, like, ability to dial a phone), but not enough to merit a claim on her insurance policy. She does, however, have cognitive impairment, diagnosed as Dementia by her physician. In the office, he explained that it was the beginning stages of dementia. Still, a dementia diagnosis = insurance claim, in my mind.

I've been submitting this claim without success. I kept getting turned down. I submitted my form, and the assisted living facility has submitted their paperwork.

I found out, however, a couple things: (1) the assisted living facility did not have a diagnosis from the physician for Dementia. Their cognitive assessments score her as 22 out of 30, where dementia would need a score of 20 - therefore to them, she did not have dementia. Furthermore, (2) if she DID have their version of (full) dementia, she would not be able to live there at all, since she is insulin-dependent and they do not provide that level of nursing care.

Hmm. That explains the bruises on my forehead as I've beat my head on this brick wall.

I did, however, bring the latest Bankers form to the director of the facility, and showed them that they ask whether the DOCTOR diagnosed her with a cognitive impairment. I showed the director the doctor's diagnosis. So, I'm hopeful that the facility can now submit the paperwork that might allow for the insurance claim.

If only I'd known this six, eight, ten months ago. I didn't even know what to ask. It all seemed so obvious to me.

So, we now await the director submitting the papers and the response from Bankers.