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.
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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.

April brings May showers but also new diagnosis...

The Long Term Care insurance company declined the first application, not surprisingly I guess (cynical) so we re-submitted with more careful work from the doctor. When we were in the doctor's office (so I could personally oversee his filling out the form), he said aloud her diagnosis - dementia.

Mom's reaction was swift.

"Dementia?" But he explained it very nicely, that at her age, it's the body's way of helping her to let go, to lose track, and with good support around her, it is not really a problem. It's OK to let it happen.

So, she starts to giggle. She LOVED it! As she went back to her home, she stopped people in the halls - some she barely knew - and said, "My doctor just diagnosed me with the early stages of dementia!", accompanied by waves of giggles.

Yep. Exactly so.

And, during April we've had one (or was it two?) hospitalizations. She went in for atrial fibrillation that wouldn't stop. And her cardiac cath, but I think I've already described that.

I finally got a three-month supply of her meds. That will ease the complexity of all these last-minute refills.

She's also had daily low-blood-sugar events. We brought her to an endocrinologist for her diabetes, who adjusted her insulin dosage and asked for more readings of her blood sugars. The 'home' will help administer and log those - at $10 a pop, it will end up at $600 a month, but perhaps we only need to keep that rigid of records for a month or six weeks. But it's worth it - she utterly could not keep track of that many sticks.

I had her out for a family dinner last night with my friends from Colorado and my kids and grandkids. It was loud and raucous and fun - she mostly sat there, interacted when prompted, then just enjoyed being around people. About 7:00 she was ready to go home.

We have discussed getting a wheel chair (for outings, to conserve her energy and speed up the travel) and a walker (for walking outside of the home, since the home has railings everywhere). She was open to it. Now I just have to figure out how to get them (with Medicare). Sigh.

wow... it's March already...

I've had a few other distractions... work, personal stuff... and things quieted down into a routine. Time to come chat since there has been some news.

About a month ago, my company offered a voluntary separation package as part of a layoff effort. I took it. Just too much to try to handle stress of mom and stress of work. Although mom tends to settle into a routine, the routine is one of a constant stream of neediness. Often small things ... but, 'often' is the operative word there. More on that another post.

Last week, she had a second event with chest pressure, and a second trip to the emergency room. They admitted her, did a nuclear stress test which revealed abnormality, and then scheduled a cardiac cath for the next day. Upon doing that, it revealed a 60% blockage, but over a lengthy area of one artery, and other lesser blockages in others. Just treating with meds.

We ordered the new meds, and they came before I could get there to put them in the pill boxes, so she was going to do it. When I got there, I found that she had doubled up on the Detrol erroneously, but NOT put in the new pills. Sigh.

And, last night I got the results of the insurer's review of her application for benefits for long term care. They denied it. Just said she wasn't cognitively impaired nor was she physically unable to do ADLs. But - her doc said she had dementia.

After I called them, I was told that the doctor's statements lacked some dates, or details. (why couldn't they have just said that? sigh). I will try, try again.

Don't obsess... don't obsess... don't obsess..

My sis says I need to give myself a break. I tend to obsess (yep, so true). If insurer pays or doesn't, just don't sweat it.

At my job, I'm a high-performing program manager. I manage complex programs/projects with lots of moving parts. Yes, I get stressed, but I handle it.

Yet this has got me flummoxed. You should see my own desk at home. Eeks. Too bad I'm not so good at applying work skills inside my own home.

I fantasize of a well-ordered, simpler life. Where things are in their places, where things get done on time. Where piles don't exist and to-do lists are short and quickly dispatched.

Yeah, right.

(of course, you KNOW that on my other screen, I am researching ADLs. groan)

don't obsess.... don't obsess... don't obsess... (that's my new obsession. haha)

arrggghh - the Paperwork Monster...

Over the last months, I have been working at moving all her bills and business contacts over to her new address, and, autopayments over to her new bank accounts. It's unbelievably frustrating.

There are her phone bills (former home bill, new home phone bill, long distance, and mobile). Her internet service provider - both ending the old one, and setting up and paying for the new one. Numerous medical insurers, as well as doctors, hospitals, both in her former address and her new location. Change social security payments and providers and payees. Change investment accounts.

There is just the matter of finding out all those accounts. When I took over for her, she had proudly delivered her box of important papers - but, I found that she stopped filing in about 2004. She also had sheaves of papers scattered around in corners and piles, evidence of important contacts but all in a muddle. Some I discovered when looking at her old bank account, and finding auto-deductions for services.

Also, since I'm not HER, I am required, appropriately, to provide proof that I can speak for her. Finally, one at a time, I am getting my name on her account, but I doubt if I'm halfway through the list.

Just as an example - I was getting her Medicare prescription drug coverage plan changed to the new address, and, changed to her new bank. I called several times, then spent 45 minutes slowly and meticulously giving someone all her information. That person gave me a case number, then needed to transfer me to a licensed agent. I got transferred to the wrong place, then got disconnected. AARRGGHH. But I thought, no problem, I have a case number and can pick up with relative ease. However, when I called back and finally got through to a licensed agent for our state, there was none of the information I'd provided that was included in the case number. I spent another HOUR on that phone call. Two hours total. During work hours. So, I had to work until 11 that night to make up for the time lost.

Today I work on applying for benefits from her long-term-care insurance. I'd sent out sections to her physician and her Assisted Living facility. I'm nervous because I found paperwork that her former doctor had filled out, saying that she had no problem with any of the "ADLs" (activities of daily living - continence, dressing, transferring, etc) which could mean a denial of the application for benefits. However, that doctor never was informed about the fact that she has frequent continence problems, she leaves poop on her toilet seat, she started fires when she prepared her own meals, and had frequent low-blood-sugar episodes because in her independent-living situation, she snacked constantly instead of good meals. And, with her existing care in Assisted Living housing, she no longer has some of those problems (no kitchen fires since she has no kitchen; fewer medical emergencies because she takes her meds regularly with help of the staff). I will submit the application but I'm concerned that her old doctor's opinion may give the insurer a reason to deny the claim.

Then there is the other to-do list:

• get a handicapped placard so that when we go out, she can walk less.
  
• get her an identification card so that when she flies or writes checks, she has local ID.
  
• pick up an ink cartridge for her printer.
  
• bring hammer and nails to her apartment to put up the clock.
  
• order the lighted magnifier on a stand.
  
• order her diabetic supplies.
  
• every weekend, go over and set out her pills.
• get stuff out of storage that may freeze, or, that she may need.
  

AND - groan - in a week or two she will move to a new apartment, a 1-bedroom. And I will need to change ALL the addresses again. And, that will create a new to-do list of emptying out storage and stopping that payment. And putting up pictures and putting things away.

I feel overwhelmed. I have my own challenges - we just found that our own credit card was being used fraudulently in Florida, so we had to cancel and get new ones. And for my OWN bills with autopay, I must go thru them again and change the card#. And our own office is piled high with disorganized papers and work we're trying to do. We have our own printer that needs fixing. Seems everywhere I look there is a to-do list. And my job... very highly stressful. Eeks indeed.

Well, like eating an elephant, I guess I'll just do it one bite at a time. And let the rest of the work just wait until I can get to it. We are warm and she is cared for and life will go on.

So, life has settled mostly into a routine at this point. On weekends, I set out her pills for the week. I usually take her out shopping once a week. During the week, I stop by after work about 4 days, and call daily. I take her to some of her doctor's appointments, though she does have rides from the center as well.

There are still tasks to be done but they are not time-critical. I need to go to a lawyer to see what papers need to be updated. Get her an identification card. Change some auto-payments to her new bank account. File insurance papers. Pay her bills. Sort through her storage unit to find what needs to be brought in from the cold, what needs to be moved to the adult family who is designated to receive her excess items. Move things into her apartment. There are more, but those are the routine.

Less drama. More routine. Just a relentless awareness of her needs.

Wow - I missed all of November! But I'm back... and things have quieted down for the most part.

There was the explosion in Target store - an outing with my sister and our husbands and Mom. Mom had been rude, snipey, especially to me. I just gritted my teeth over and over. Finally, in Target, she literally yelled, nastily, and I walked away. I kept trying to come back calmed down, but I then had to walk away again (she was oblivious, as the jewelry counter person was adjusting a watchband). Finally, I came back, and I told her (heatedly but controlled and quiet) that she could NOT talk to me that way. That I deserved better. That everyone was absolutely bending over backwards FOR HER, and she needed to treat others with respect and kindness, not like a spoiled child. She was shocked, and responded OK. We went back to my sister's house, and talked further. Since then, she has occasionally been snipey, but she has quickly adjusted or apologized.

She is still in her studio apartment in Assisted Living. She was offered a one-bedroom unit which has a nice view though not as ideal as her present one. She told them she would take it - then debated changing her mind. She asked for me to help with the decision, but I refused to take a stand, I just talked through the options with her.

Still, she tells my sister: "Sometimes I feel like a pawn, without any decisions of my own. Nancy is so capable and so strong willed ( I raised her?) that I can't remember that I do have an opinion, too." Fortunately, my sister understands what's happening, and doesn't buy it. Mom as victim. Mom as helpless. Hmmm not so much.

Frustrating too is this helpless role she has taken. It's particularly frustrating because she chooses to be helpless - she gives up on attempting anything that would challenge her. She won't read because "I'm blind". No, Mom, you're not blind, though you do have some challenges with your vision which could be aided by magnifiers and better lighting. But when we try to get her better magnifiers, she balks and complains. "Send it back!" Then she plays victim and helpless. Groan. Sigh. Grr.

More later.

The shopping trip that should never have been....

oh brother what a disaster. (Warning - this is a long whining venting post about yesterday's shopping trip.)

OK, so she's not taking the new 1BR apartment, so we really didn't need to shop. But, we had talked about it a lot, and I thought, let's have an outing to get her out of there, and why not Nebraska Furniture Mart? Then when she DOES get offered a lakeview apartment, I can just go select her preferences without her having to come. She said she'd really like to go, so off we went.

One other background thing - with her permission, I had ordered and brought over the pink flowery bedspread? She kept saying she just didn't know how it would look, so that's why she didn't want it. I figured, with her eyes maybe she just needs to see it in person. She agreed. So, it arrived and I brought it over for her to look at and think about on Friday.

So we pick her up about 1:30 in the afternoon on Saturday. Drive to NFM.

First we go to the desks. Nothing really seems to make her happy. But not unhappy either. And then she snappily says she does NOT want to get anything today. Period.

OK, so that's decided. OK, well, not decided.

Time to go to look at what beds are available. On our (slow, shuffling) way through the cavernous store, she told me she wanted me to send back the bedspread. "I know I've told you all about the pink cabbage roses, but I like my plain blue blanket. It's simple. It's what I know." (Then later, she says something about how she DOESN'T know if she wants it or not).

Something in me just snapped. Just a bit.

Then we walked around the beds and it was CLEAR, absolutely CLEAR, that there was nothing she was interested in seeing. She didn't want a bedstead with a footboard because it's not what she has always had. She made mocking comments about them. Expensive. Fancy. too light, too dark. or mostly she just walked by them, unseeing. And, I had lost patience inside, though I was trying to stay positive. I just didn't have it in me to alter the mood, and she wasn't about to be altered anyway.

Somewhere while we walked around the beds, it really really snapped. I was ready to walk away and drive home without her. (Please know I never would...)

Anyway... my own internal life-lessons:

1) don't go on a shopping outing unless there is a immediate need. A 'have to'.
2) if we go on a shopping outing, bring water. (She had an "I need water NOW" episode in the middle of the beds.)
3) her room is HER room. If she wants to trash it with heaps of 'used-once' clothes, let her. if she wants a threadbare blanket, let her. etc etc
3a) (but... to #3) But if I WANT to fix up her room, why not? She highly praised these other women's daughters who came in and fixed up their rooms carte blanche. if that's so wonderful for them, why shouldn't I? Maybe she'd end up loving it.
4) if she doesn't want a pretty bed (nice headboard, footboard), why should I care? It's not like we have people lining up to get it when she dies. Full beds aren't big on anyone's wish list.
4a) (but... to #4) But if I WANT to see a nice bedframe, etc, as I care for her, why not? There are loads of nice bedframes on sale that would really make her room look FINISHED. To look like a adult's home instead of a dorm room. Or a 7-year-old's room.

I wonder how much of this attitude of 'oh that's good enough' is actually due to a sense of waiting to die? Why bother getting a bedspread if I'm just waiting to die. On the other hand - maybe that is a normal and even healthy and appropriate phase as one nears death. Acceptance. I don't know anymore. And it doesn't really matter. And maybe it's the comfort of seeing things that are familiar. I think I should bring back the white nubby bedspread, or, the orange/green bedspread when she gets her full bed - that will let her feel comfortable and 'at home'.

Anyway, we got water, we drove homeward in annoyed semi-silence. (She had said something to recognize that she was a pill; I said something that we'll get through it, I just want to help you, blah blah blah). We stopped at the store for some items then brought her home in good time for dinner (5PM).

Good news - she did a lot of walking around and no incontinence incidents. No close calls even. Not even any potty breaks (another source of annoyance to me - we were by a bathroom and she wouldn't go 'just in case', even after her history of diarrhea incidents - sounds like a 3-year-old, eh?). And, I put out her meds yesterday so I don't have to come by today. And, the cable/internet comes by today so she can get better service and simpler email. Another good thing - she said she never gets hungry now, like she used to in BV. She recognized that she used to snack all day long, but here (with real meals) she never thinks about snacking.

Enough already. Will this ever get better?