SNAPSHOT

Monday April 12, 2010 

a day in the life of a caregiver

2:00 am   Mom woke me up with some rather loud vocalizing.  She hasn't been feeling well so I rushed to check on her.  I changed and repositioned her.  She fell back to sleep.

2:30 am   I returned to bed to try and catch some sleep.

8:30 am   I arise, take a quick peek in on mom who is still sleeping, and stumble to my morning coffee ritual.

9:00 am   The morning care for mom:  bathe, change, clothe, replace wound bandage and feed. All the while  chatting and trying to be pleasant.

9:45 am   Phone call from hospital case worker regarding my aunt Theresa who has been in the hospital  since Thursday.  I'm very tense because this is the call I've been waiting for and hoping to hear that my aunt will qualify for and be transferring to a nursing home facility.  Excellent news!  Apparently my threat of dropping my aunt off at the SPCA worked. At noon Theresa will be moved to a local facility where we know much of the staff either from other family members having been there or from my friend's mom having been there for a few years.

10:10 am  Arrange for an aide to stay with mom so my sister and I can tend to Theresa's transfer and get her settled in at the home.  

Noon:  Patricia [my sister] arrives with the aide.  I give some quick instructions to the aide because the wound care doctor is expected for his weekly visit.  This is an important visit because for the past couple of days I've been worried that the wound isn't doing well and I'm afraid it might be infected.  Also, today is the day that a new aide is going to be provided by Visiting Nurse so my private aide will have to show her "the ropes" and settle her in.  The new aide will be coming 3 times a week for a whopping 90 minutes per visit.  Still, that's a help to me in terms of laundry, bathing, etc.

A side note about wound care.

I hate it.  I never intended to become a nurse or doctor.  I'm a man of the arts not of blood and guts.  I've learned to do it and I do it well but it takes its toll on me.  I have to psyche myself up to the task every time I change the bandages which is once a day sometimes more if necessary.  Aside from the "gross factor" I'm always worried about hurting my mother or contaminating her or what I might find when I remove the old dressing.  There is nothing pleasant about this.  I'd rather do any of the other less-than-pleasant tasks that I have to do on a daily basis other than wound care. But I do it.  I have no choice.  Patricia won't even stay in the room for the changing of the wound.

1:00 pm:  We arrive at the nursing home, which I always refer to as "Shady Pines" in homage to the Golden Girls.  Perfectly appropriate because the character of Sophia could easily have been based on Theresa.  Theresa has already arrived and is settled into her new room.  We chat a little and then Patricia and I make the rounds of visiting the staff.  We want to make sure they have instructions for Theresa's care.  They're all very attentive.  Theresa will be in good hands.  Then we have a visit with the gal in charge of admissions.  We know her.  We have friends in common.  She's a lovely person who fought hard to get Theresa placed with her.  Many years ago when my mom had had a fall and before we had any help at home, this girl came to my house to bathe and help with my mom out of the kindness of her heart.  Now we owe her an even bigger "thank you".

2:30 pm:  Patricia and I finally stop at the nearby McD's for a very quick snack.  Then we go shopping to get some things for Theresa to make her more comfortable and "at home".  We get some new clothes, snacks, a clock radio and a stuffed kitty.

2: 40 pm:  While shopping, my iPhone rings and it's the wound care doctor calling from my mother's bedside. As I had feared, he suspects infection.  He prescribes medication [which means that I'll have to fetch that later] and changes her care orders. Now the wound dressing has to be changed twice a day instead of once. Great.  Why make me sick only once a day when you can do it twice!  

3:30 pm:  We schlep back to Shady Pines to give Theresa the things we bought.  She loves the kitty but of course had comments to make about everything else.  Well not the snacks.  She's happy to see those and digs right in.  "What do I need [fill in the blank] for" she asks.  This is as predictable as Christmas in December.  It's a family trait.  A very annoying family trait.  Why say "thank you" graciously when you can grumble instead?  Now I write her name in all her new clothes [so they don't get lost in laundry].  Theresa is officially installed.  We're out of there.

4:15 pm:  Home.  Meet the new aide who is just finishing up with my mom.  She seems nice enough.  She says goodbye to us, scratches the dog on the head and leaves.  Now I get the rundown from my private aide.  "She seems OK but she keeps looking at her list and only doing what's on the list".  Followed by "I had to TELL her to change the bed after she bathed Adelaide."  Our private aide loves my mother.  She's very protective.  I love that about her.  "I told the new girl that you mother knows everything that's going on so she didn't think she could get away with anything.  I told her she finds a way to tell you if anyone is mean to her."  

4:30 pm:  Patricia takes the private duty aide home.  Ah, peace and quiet!

4:35 pm:  Phone rings.  My mother's brother calling to see how things went.

4: 45 pm:  I sit on my bed to check my voicemail, etc. for a few minutes.

5:00 pm:   Phone rings.  I wake up.  Aunt calling to check on Theresa.  I know this particular aunt will call at least 10 more times tonight.  Thank God for caller ID and voicemail!

5:10 pm:  Feed the dog.  

5:20 pm:  Rush out the door to fetch the new prescription for my mother.

5:30 pm:  Stand in line behind 20 people at the drug counter, while answering calls on my mobile phone.

6:00 pm:  Feed mom.  Give her her medication.  Change and position her.  Make sure she's OK and comfortable.

6:30 pm:  Rush out to an appointment I had for myself.  I manage to grab a bit of dinner while I'm out.

8:00 pm:  HOME.  12 calls on the home voicemail and I'm going to ignore all of them. Check on mom, she's fine.  Dog is fine.  I'm fine.  Thankfully I managed to grab a double espresso while I was out.

8:15 pm:  Notice that I had TWO aides in the house today and neither of them did my mother's laundry.  So now I have to begin the laundry.  Today was bed-change and bath so there is at least two loads of laundry to be done.  The last thing I want to be doing is laundry.  I can't stand looking at it so into the machine.

9:10 pm:  Laundry in process.  Dog outside for his constitutional.  Time to change mom's bandage.  Yuck!  The doctor did a bit of surgery while he was here earlier in the day.  Now I have to deal with that.  

9:40 pm:  Bandage done.  I survived.  Dog is in for the night.  More phone calls unanswered.  First load of laundry moved from washer to dryer.  I grab a bottle of water, a glass of brandy, a couple of rice cakes and plop on my bed.  Collapse is a more accurate word.  It's "me" time.  News on the TV.  iPad on my lap.  Drink on the night stand.  

11:30 pm:  I awake from my nap!  Drinks still on night stand.  iPad sleeping on the bed between me and the dog.  

11:35 pm:  Tend to Adelaide one last time [I hope]for the day.  She's changed, had a snack and ready to sleep.  I kiss her forehead [both to say "goodnight" and to check her temperature which is a habit], turn off her TV and return to my bed.

11:45: Sip beverages.  Watch something stored on the DVR.  Catch up on emails. Drift to dreamland. 

"I was always looking outside myself for strength and confidence but it comes from within. It is there all the time."

anna freud

TRANSITIONS, DECISIONS AND BUREAUCRACY

"These last couple of weeks have been difficult ones. My mother's eldest sister, quickly approaching 93 years old, had a serious decline in both mental and physical ability. Long a widow and without children, Theresa depends on my sister and me. Until recently she has been amazing.

Barely four-and-a-half feet tall, Theresa has always been a dynamo. She hasn't had an easy life but she has been blessed with longevity and good health. Born at the end of World War I, the first child of young Italian immigrants, her birth mother died when Theresa was two years old. A couple of years later my grandfather remarried and there were six additional siblings. She has out-lived her husband, three of her younger siblings, nearly all of her friends and survived breast cancer. She has always handled adversity with admirable grace and dignity.

Decision time has arrived.

Theresa can no longer live on her own.  This has become obvious.  For her own safety and regardless of her desire to remain independent, we must intervene on her behalf.  Just as I demanded she give up driving after she had an auto accident in her mid-eighties, now I am charged with the task of arranging for her care.  Home care or nursing home?  Those are the choices.  Both are expensive.  Both have their appeal and detractors.  Where do you even begin?  

Because of her declining health I chose to begin with the physician.  I arranged for an appointment and a consultation.  Having been through a similar situation with another of my mother's sisters, I know that there is a Medicare provision for a period of nursing home stay following an approved three-day minimum hospital stay for a qualifying condition.  This Medicare benefit is up to a maximum of 110 days.  That is enough time to make plans, figure out finances and place her home on the market for sale.  

After an unnecessary [for me] lecture on caring for the elderly from the unpleasant doctor, he suggested I take Theresa directly to the emergency room where she could have tests and get necessary treatment after which he would check-in on her and determine a course of action.

This is where the bureaucracy begins....

Upon arrival at the local hospital emergency room, my aunt is met by the ever-competent and usually pleasant staff of nurses, physician's assistants and physicians.  This is familiar territory for me having taken my mother and her siblings here too many times over the past several years.  Everyone looks familiar to me.  Some of them ask me how my mother is doing.  They quickly begin testing, poking, prodding, ex-raying my aunt.  I begin answering questions, filling out forms, offering documents and signing, signing and signing.  I am well aware that I will be answering these same questions many more times over the course of the next few days.  It seems that information is never passed along with the patient.  It's like being in a phone chain with the local cable-TV provider and being asked repeatedly for your phone number.

After several hours of stabilizing her blood pressure, blood sugar and hydration, Theresa's ever-charming physician has arrived to review her condition and chat with us.  

"Fasten your seat belts.  It's going to be a bumpy night."

bette davis [all about eve]

"You know she can't take care of herself" he begins with the obvious. "I'm going to try to admit her but there's not enough wrong with her, the tests aren't bad and she's not going to qualify for that Medicare thing". We're having this conversation while she is receiving three different IV's and her blood pressure is near stroke numbers.  At this point I'm fairly certain mine will be too.

Theresa finally gets admitted to the hospital.  I can have a night of rest [from this obligation] knowing that she is being taken care of.  At promptly eight the next morning the hospital case worker called me.  Theresa is being discharged and she's not qualified for the nursing home.  "Oh, and she can't be left alone" I'm reminded.

"Now what" I ask aloud to the phone after the case worker has already hung up on her end.  I begin calling someone I know at one of the local facilities.    "Let me see what I can do" I"m told.  That hope held out for about an hour until I get a call saying nothing can be done except Theresa can go into the nursing home as a private pay from day one which requires two months payment in advance, roughly $24 thousand dollars.  Not a chance I'm forking over that kind of money with no notice on a Friday if at all.

Hours pass with no contact from anyone regarding Theresa.  Meanwhile I'm trying to come up with any solution.  This is a real problem now.  I certainly can't take on full charge of my aunt since I am already more than busy taking full-time care of my own mother.

Half past three arrives and my sister and I head to the hospital, still no good plan in place.  I'm thinking that I might just plain refuse to take her home.  "What are they going to do?  Put her in a cab to get herself home?  I doubt they want to risk that liability.  "Damn it, why haven't I heard from anyone?"

When we get to my aunt she is sitting in her chair with her hardly-touched lunch in front of her.  She looks terrible and she is still connected to at least three IV's.  "Oh, she's doing great" the nurse reports.  "Really?" I ask wondering if she simply means "she's 93, breathing and talking [a little]".  Then the nurse, who is really very nice and sympathetic, continues to tell us that they had to give Theresa "some insulin" and she's not walking on her own and "she's been vomiting a couple of times".

Sounds to me like she's perfectly ready to be discharged.  All I have to do is get her home, have IV's set up, learn to monitor her blood sugar and administer "some insulin".  Oh, and don't forget the vomiting!

After ninety minutes the case worker arrives to chat with us.  I express my apprehension and I think I made some sort of joke about sending Theresa to the SPCA "because if they can't find a home for her they euthanize."  Note to patient advocates:  "case workers" do not have a sense of humor and get nervous when you mention the term "euthanize".

"We would never just send a patient home without a plan" explains the CW.  "Theresa is here for the weekend but after that you have to have a plan.  Oh, and she's still not going to meet the Medicare criteria".  I explain that I'm thrilled that she will be safe for the weekend but we are still faced with the problem of what to do.  "Monday is a long time away" she explains "considering your aunt is 93 and all".  I'm told that there will be another case review on Monday and maybe "we'll be lucky and Theresa's health will have declined enough for her to qualify for care".

This is the pathetic state of our current health care system.  How can anyone say that overhaul was not needed?  We're reduced to praying that a 93 year old woman gets sicker in order to get help.

We visited Theresa this afternoon.  She's comfortable although she's not eating.  Today's nurse was very curt but did inform us that they had taken more ex-rays and an ultrasound of Theresa's abdomen since she's still vomiting.  

"Hey, maybe we'll get lucky!" I'm horrified to have repeated. 

Theresa is thoroughly ready to go to a nursing home.  I discussed her situation with her today and explained that if she goes home she will have to have a lot of care and that it would only be in the interim while other arrangements are made.  "I don't want to go home" she declared.  "At least at the nursing home there will be company and things to do I'll have a nice room".  There's the Theresa we all admire.  Ever the optimist.  Ever the pragmatist.  One more challenge that she will face with grace.  She also has the comfort of knowing that we are doing what is best for her and that we are here for her whatever life brings.

I hope we come to an easy solution on Monday but we will do whatever we must to keep her safe and comfortable to best of our ability.

"We're all stumbling towards the light with varying degrees of grace at any given moment."  

bo lozoff