Thursday, June 28, 2012

The Last Chapter

Dad passed away the night after Fathers' Day.  We're pretty sure it was a peaceful passing after a fitting good-by.  My cousin Mimi arrived from California on Saturday to visit Dad one last time.  She had just returned from a two-week jaunt to Europe and was recuperating from oral surgery.  She was also on deck to visit us in Vail next month.  Despite all these obstacles, she arrived to give her cousin Lennie one last kiss.  My father had the biggest smile on his face when she stood next to him bedside to stroke his arm and talk gently to him about how much he meant to her.  Keith and I were with her and it was a very special moment.  On Sunday we returned in the morning to give him our Fathers' Day card and a very inexpensive DVD on National Monuments that I had bought at Target.  The card said it all:  "A Dad gives advice and encouragement when you need it, a dad cares about the things that mean most to you, A dad shares all your success and happiness because a dad loves with a love you never outgrow.  You've always been the best kind of dad in all the most important ways.  Happy Father's Day."  As weak as he was he still read the entire card by himself and then let me open his gift.  Mimi and I returned later on in the afternoon and we could see that he had taken a turn.  He seemed agitated.  We did not stay long, but before we left, he held my hand and gave me one last squeeze.  He signaled that he wanted me to turn off the light and that was the last time I saw him.  His usual caregiver arrived at 7:30, the nurse called me at 8:30 to give me an update, and the final call came just after midnight.

My brother and his family were on the way to Denver from Chicago before heading down to their new home in Albuquerque.  They arrived the next day.

The funeral was lovely but very small.  Mom had died only three months ago.   Adam flew in from Los Angeles and several close friends of Keith's and mine attended along with my father's cousin Bob.

This week has been a flurry of activity as we close up Dad's apartment and sort through all the legal and financial paperwork.  In between I feel a tremendous sense of loss, partly because this is my last parent to die, and partly because there was a strong bond between my dad and me and I miss him terribly.  He was such a gentle man as well as a gentleman.

Thursday, June 14, 2012

I'm Crabby

Dad stayed in bed all day and night yesterday.  That's happened once before, and hospice says it's normal at the end of life.  Today Dad is up again, but barely.  His teeth aren't in his mouth and he's not wearing his hearing aid.  I'm fed up to my ears with the Assisted Living facility.  Yesterday I left him in a fetal position facing the wall and when I came back three and a half hours later, he was in the same position and badly in need of a diaper change.  "I just came on," said the caregiver in charge of the floor for the day, absolutely exempting from any blame on the current situation.  I was the one that initiated the help.  He didn't come into Dad's apartment on his own, and I waited quite a while to see if someone would come in. The caregiver goes to get the plastic liners that protect the sheets from excessive moisture and discovers that he's out of them.   He says he'll borrow some for Dad "later."  "Hospice is supposed to supply them," he says.  "Hospice says Dad should be turned every two hours.  Will you be back in two hours?"  I inquire.  I am leaving at 5:15 and the private caregiver I now hire to get Dad through the night doesn't come until 7:30.   "I'll change him in two hours," he promises. "How will you remember?" I ask.  "Oh, I'll remember," he says.  "Sure," I think to myself.  "If I make a special request, he'll accommodate me, but what about the others?"  "I'll write it in the book," he says.  The book is for one day.  I'm fed up to my ears.  I've had incident after incident and I'm over it.  I call hospice to find out what needs to be done and that it's not being done.  Today I e-mailed the head nurse at the AL facility with a copy to the Hospice director to sort out what should be done and when it should be done including toileting, "repositioning," and hydrating.  Then I called up Hospice and asked them to deliver some new plastic bed sheets.  Now the Hospice director is going to call a "meeting" to straighten it all out.  I hope Dad is still around when they decide to schedule something.  Really, it makes you wonder what you did.  Not only that, my some-time care manager has checked up with Hospice periodically on her own to see how Dad is doing.  I wonder why she doesn't call me.  I think that's really more appropriate.  Bottom line is that it's always about money.  The care manager wants more business, Hospice is getting more business faster than they know how to manage it, the assisted living facility keeps its costs down by hiring way less help than they really need to be a full service institution and besides that they wouldn't know how to manage if they did hire someone.  In my up coming book, I'm going to factor out the costs of staying in a home with full time care as opposed to staying in a nursing home as opposed to staying in an assisted living facility and supplementing the nursing care.  Bottom line is that the people you hire are your responsibility.  It's an art to figure out how to have the best quality.  You could leave the assisted living facility (at this point that would be totally traumatic for Dad which I told the head nurse last week when Dad fell out of bed and they were considering sending him to the emergency room) and go to a worse nursing home.  I mean, you really take your chances on your choice and once you've made the choice you have to try your hardest to make it work.

Thursday, May 24, 2012

In a Holding Pattern

After a few days of walks in the nice sunshine and my father in a relatively good mood, yesterday, a cooler, cloudy and rainy day was not so good.  Dad wasn't happy that I had to take him downstairs for a haircut or with the fact that my husband and I could not stay for the beginning of the five o'clock ballgame because we had to babysit for our grandchildren.  The caregiver's report from the prior day indicated that Dad went for a walk and sat outside in the pavillion for a while, but judging from the fact that Dad did not answer my phone calls, I knew he wasn't happy with me despite what I considered to be a good report.

This has been a bad week for me in Dad’s assisted living unit. First, there were no more trousers left in his closet with four days to go before the laundry was done. Part of this problem was that Dad kept needing new trousers. The other part was that at least two pairs were missing. My answer was to wash the trousers in the laundry room though I pay for assisted living to do it and then go on a search for the missing trousers. The search produced no results and means that I must add purchasing new trousers to my never ending to do list.

Then I went to charge Dad’s cell phone. I keep the charger in the kitchen portion of Dad’s tiny apartment. It is officially missing. Noone knows where it is. Guess what I do today? Go to the Verizon store and buy another charger.”

Today I have scheduled a volunteer from the Jewish Family Service to pay Dad a call.  The idea is to introduce him to a person who could fill in as companion.

Dad doesn't like anyone else but my husband me around, but to be honest, when we get a break, we feel so much better.  So whether Dad likes it or not, he's stuck with those we hire to fill in for us.

Thursday, May 17, 2012

Not so good

Dad's best friend of 50 years was here last weekend.  With his daughter and son-in-law, they visited together with Dad for the four days that his friend was in Denver.  I know Dad enjoyed this thoroughly and I think now he's experiencing a bit of a setback as life returns to normal.  In the past two days, he's called me up in a very anxious state and insisted that I come immediately to see him.  I am beside myself and yesterday asked the Hospice nurse what she thought about transferring him to a nursing home.  After my husband calmed me down, we decided it's better to keep him where he is since the nursing homes are much further away and we'd wind up having to travel greater distances every time he expressed his anxiety which we know would continue to occur.  I think now that his friend has left, there is nothing in the immediate future for him to look forward to.  The biggest problems we have with him other than this new anxious state is that he no longer eats and his liquid diet doesn't provide enough nourishment.  That makes him weak due to the continuous loss of weight and healthy muscle and tissue.  I have been to Whole Foods numerous times to try and provide the right supplements.  One icky greenish can was fifty bucks which I more than happily purchased and realized afterwards was not a good deal.  Every caregiver has a different theory on how to encourage him to drink the right stuff, i.e. only Diet Coke because the real stuff has too much sugar, put whipped cream on his bottled smoothie, no more strawberry milk shakes because they have too much sugar, put Ensure into a tiny cup so he'll not find it overwhelming to finish.  In between I find diet supplements to put in water with only a modicum of success.  We have been forced to watch his intake because he has edema (swelling) of his right hand.  Since we started watching his diet and have elevated his hand, the swelling has gone down.  We are very fortunate that Dad does not have pain.  Other than constantly trying to figure out how to go on and not being able to move, he seems comfortable.  At this point it is hard to think of ways to keep him occupied.  He is still alert enough to know what's going on, but he'll shut you off if he doesn't like the subject matter.  With my husband, who has the most influence, we watch baseball and golf and occasionally the news.  When it's nice out, we take a late afternoon walk.  A caregiver comes late in the afternoon two days a week, and a volunteer from Jewish Family Service is expected to start visiting next week.  The Hospice team checks in on him weekly.  What else can we do?  Not being one to give up, I am planning to go to the library to find some DVD's that have short biographies about people Dad used to admire.  We'll see.  We tried the Game Show Channel and he nixed that.

Thursday, May 10, 2012

Anniversary of Sorts

One year and four days ago, I moved my parents from Chicago to Denver.  Mom didn't even make it a year out here, and Dad isn't going to be around much longer.  Was it the right thing to do?  It's difficult and not a good idea to go backward, but as Dad is losing more weight everyday and less and less able to move (it now takes two people to help him), I can't help but think about the choice.  On the one hand, it was a good move.  Until January of this year, both functioned in their new home.  Dad, though not socially oriented, did like his walks with the caregivers and enjoyed eating in the dining room with Keith and me.  And Mom, who was very social, enjoyed her little dementia unit community.  We all did.  We enjoyed visiting her and the caregivers and other residents' children.  They also had the advantage of seeing their great-grandchildren, something that would not have been possible in Chicago.  The other reason to be positive about the move is that I was able to be here for both of them when they needed more.  If they had remained in Chicago, I would have either had to supervise by long distance or travel there for each crisis or hire a geriatric care manager in addition to their caregiver.  If you consider the cost of the move to Denver versus the less expensive charges incurred once they arrived, the expense was about the same and maybe, if they both had remained alive, quite a bit less costly.  I guess the only downside was more my brother's than mine.  He became the one that had to travel here amidst selling his house and getting ready to retire and move to Albuquerque.  I myself have had no regrets about the extra amount of time I've had to put in to care for them personally as well the task of paying attention to their clothes, their finances, their friends and their other emotional needs.  It has been my honor.   There are many happy memories from these last days of my parents' 90 plus lives:  a great holiday-birthday brunch at our house, traveling the grocery aisles with my dad as he maneuvered his electric cart, going to Fathers' Day brunch and watching the dads and the great-grandfather and grandfather adorn their Mad Men hats, attending Mother's Christmas bell concert when they took away her bell.  I've had a chance to see how resilient they both were until the end began, and I've had a chance to be reminded of how rich their lives were, filled with myriads of friends, marvelous cultural and travel experiences, art, music and family.  As I say to people when they extend their condolences, "It's been a good run."

Monday, April 23, 2012

Same Old, Same Old

Dad is in a holding pattern.  He spends most of his day sleeping in his chair watching golf and now that the season is in full swing, baseball.  I see him daily during the week and on the weekends, Keith helps me out by taking Dad for walks if the weather is good.  He is very weak and can barely transfer from his chair to the wheelchair without great effort.  He is still able to comprehend most of what is going on, but he cannot speak his words without losing his breath or his train of thought. Hospice workers come and see Dad regularly: the social worker, the chaplain, the nurse, the certified nurse assistant who bathes him unless he says no.  We seldom take Dad to dinner anymore since he basically eats nothing.  For a while he was drinking Burger King strawberry milk shakes, but a week or so ago, he nixed them as well.  We did make it successfully to half of the sedar dinner that the senior living facility hosted during Passover.  We did not make it for the caregiver to bring him to our house the following Sunday for fried matzah with the kids and the boys.  My brother and his wife came for a brief visit at the beginning of the month.  They move to Albuquerque in June.  Last week I hired a new care management company.  The old one never returned my calls and that was hurtful to my sensitive self.  I hired the company so that I could plan on getting up to Vail for the concert season without worrying about being around for Dad.  I also hired them to visit Dad twice a week just to break up the monotony and spell me a bit.  We'll see.  Dad's friend from Chicago is planning an early May trip to see his daughter and Dad.  I hope Dad's still here to see him.  We take it day by day.

Thursday, April 5, 2012

Yikes

April 4, 2012

Yesterday I went to see my dad and accompany him downstairs to the beauty salon to have his nails cut.  As I walk in, he has collapsed in front of his walker with the caregiver standing behind him.  Soon after there are two caregivers, a nurse and myself trying to figure out how to lift him up and put him down.  So much for the beauty salon.

The rest of the time is spent lecturing him on why he has to eat to gain some strength, how he can't get out of his chair without help, and a bunch of advice on how to make it through the day.  Dad will pay attention to none of this.   He laments that he is "a pain in the ass."  "No, Dad," I say.  "I just want you to feel better."

My panacea:  First I try abortively to visit a nursing home as yet another alternative to care of Dad.  Then I go home, drink wine, bury myself in a NYTimes crossword puzzle that's way too hard for me, attempt unsuccessfully to talk to Dad, go to dinner, turn off the phone and attend a somewhat vapid musical revue of the life of Johnny Cash.  Tomorrow's another day.  We'll take it as it comes along.

I'm afraid I'm not the ideal caregiver example.

Thursday, March 29, 2012

Mom's Passing

My mother died on March 12th.  Though it did not seem so at the time, she passed relatively quickly.  My brother flew in that night and helped us arrange for the burial.  The funeral took place on the following Friday after the Monday on which she died.  Though my father was still very frail, he attended the funeral as did all of the children and their spouses and the grandchildren and one daughter-in-law.  Though there was sadness at losing Mom, there was also a sense of relief.  Especially at the end, Mom was suffering so that it seemed almost a blessing when she finally passed.  It took my dad most of the week to have some closure as the calls drifted in and the cards, flowers and donations kept coming.  What a tribute to a couple in their nineties that so many people would send their sympathies.

Two weeks have passed since the funeral and we are all trying to return to some form of normality.  My father, still in Hospice and housed in assisted living, is on oxygen, confined to a wheelchair, and totally reliant on my husband and I for his entertainment and supervision.  At 96, he's entitled to just sitting, but it's a huge burden on me and one that I'm still trying to deal with.

Wednesday, March 7, 2012

Update



January 4, 2012

It's January 4th and I am very happy the season is over.  It was a bittersweet season as we celebrated the holidays with family and mourned the sudden death of Keith's sister and the passing of Keith's aunt and Mom and Dad's close friend, all in Chicago.

My husband's Aunt Marion died at the end of the Thanksgiving weekend.  His sister called to tell us the news from her hospital bed in Chicago.  She had come down with pneumonia and was confined to her hospital bed for the funeral.  My husband went to the airport with our Thanksgiving company to take a plane to Chicago.

Upon his return, we sat vigil waiting for news as his sister went in to an induced coma and then was treated by various machines that tried to maintain her systems and ultimately revive her, none of which worked.

The week before Christmas, Keith, myself and our children and daughter-in-law all went to Chicago for the massive funeral of Keith's sister, age 71, beloved by so many that the shiva went on for four days after the funeral.  We stayed for all four days, but our children went back home after the funeral and our Denver children kept looking in on Mom and Dad who were at that point in a holding pattern.

The holidays were a mixture of mourning, celebration and worry over my parents' declining health.

We attended a very funny bell concert at my mother's dementia unit during the week before Christmas.  The residents had been rehearsing every Saturday for over a month.  My father came down from his 16th floor apartment and we all watched as they took turns ringing out Christmas carols with their bells.  Unfortunately they had to take Mom's bell away.  She kept ringing it no matter whether it was her turn or not.

On Christmas Day, I hired a caregiver (double time for holidays) to bring Mom to the house for brunch and to celebrate Chanukah, Christmas and Mom's and Dad's birthdays.  I obsessed about whether this would work for days prior to the event, but it went off without a hitch and I think Mom and Dad both enjoyed getting gifts and watching our grandchildren open all eight of their Chanukah presents.  They didn't mind the rich chocolate birthday cake from Whole Foods either.

On the Monday after Christmas, Keith and I started looking into Assisted Living options for Dad.  He was showing serious signs of being disoriented and needing more help in getting through the day.  In our running clothes (it was a spontaneous decision), we visited three different facilities in the area where we live.  We also looked into assistant living in the facility where Dad currently resides.  After the first of the year, we decided we would take Dad to visit one of the facilities that we thought might be a better fit for him

On Dad's birthday we took him to Elway's Steak House and watched him indulge in fried onion rings as others looked around admiring him walking with a cane and having a good time at the ripe old age of 96.

We spent the rest of the week including New Year's in the mountains with the kids and their friends, two psychoanalysts from San Francisco.  They added a sober twist to our otherwise raucous get-togethers.  We did some baby-sitting while the kids went skiing with their friends.  I talked to Dad daily to see how he was getting along.  Despite hiring caregivers to walk him each day, he was not a happy camper.

We received notice that Mom and Dad's closest friend, Carolyn had died.  I did not tell Mom, but I did tell Dad who was very



January, 2012

It all began when Keith took the family to Mexico for his 70th and Dad was left behind.

We left on Thursday for six days.

On Friday, our son and daughter-in-law received a call that a pipe had burst in their house and that my daughter-in-law's siblings were on the scene trying to salvage the flooding that followed.  On Friday my daughter-in-law returned to Denver and left all of us remaining, i.e. son, other son, other daughter-in-law, husband, me, in charge of the two grandchildren, ages 4 and 9 months.

On Saturday my daughter-in-law began moving all of the salvageable belongings into our home in Denver including their family dog who died on Saturday night just as she arrived.

Then I received a phone call from my father that he had been rushed to the emergency room with a urinary tract infection.   My husband informed me that are housing arrangements in Mexico were non-cancelable and encouraged me to stay and manage the situation from there.

I immediately hired round the clock caregivers at the independent living facility where he lives and they remained with him until I returned on Wednesday.  In the meantime I was in communication with Dad's doctors to oversee his situation.

The catheter that was inserted into Dad on Saturday was not large enough and so he was returned to the ER on Sunday where they inserted a larger catheter

Home Health from the ER room was to do the follow-up, but the Home Health arm of Dad's housing unit took over his follow-up care.  I might add that they weren't very good at it.

I returned on Wednesday and started to pick up the pieces and have been doing so ever since.  (see next addition.)



The week of January 21st, 2012

I read A Bittersweet Season for direction and comfort.

The catheter remains in Dad after I return on Thursday. We continue to hire round the clock caregivers for Dad. Mom is somewhat neglected but seems to be OK. I take Dad to the urologist on the following Tuesday to remove the catheter. On Wednesday he tells me he doesn’t want the caregivers around. I have set up an elaborate system for them to report. One of the comments is “why am I here?” I then limit the caregivers to meals after the catheter is removed on Tuesday. We go back to see the doctor for another check-up on Thursday. Then I check on him and there are Depends all over the apartment and I discover him naked on the toilet with no caregivers around. He’s shaking his head and moaning, “I don’t know what to do.” At that point I try to regroup. I don’t want to change his diapers. It is late in the afternoon and I call all the people at Park Place for help and noone returns my calls. I go home and drink wine and fall asleep and wait for the call. Late in the afternoon I get a call from Stacy who I presume to be the Stacy at Park Place. She’s a sort of administrative assistant. I’m not sure of her title. I tell her my sob story and she recommends “respite care.” “I didn’t know you had that at Park Place,” I reply. “Oh,” she says, “This isn’t Park Place. It’s Sunrise of Cherry Creek.” By Friday afternoon Dad is enrolled in Sunrise’s respite care program, all the papers are signed, the nurses have evaluated him and he’s out of Park Place.


March 2012

Haven't entered any submission since December, although my notes are too copious to record in a succinct manner.  So without further adieu, let me rag.  It's been three months of constant issues and incidents for both Mom and Dad.  Bottom line is that both were very recently entered into Hospice at the assisted living and dementia units in the same building where they are housed.  Dad's been to the ER twice and Mom has been there once.  The calls have come frequently for Mom as she becomes agitated which we think is due to either pain or frustration.  After the two ER visits, I hired a geriatric care manager to help me navigate through the maze of caring for two elderly parents.  I had already transferred Dad to a respite care facility and was contemplating whether to send him back to his original independent living apartment.  The final choice was to move him back but place him in assisted living.  He is now permanently on oxygen and very depressed.  Mom often rejects her pills and is on morphine for pain and atavan PRN (as needed) for agitation.  Everyday I wrestle with the bureaucracy that comes with putting my parents in a private assisted living facility that is understaffed and incredibly disorganized.  My brother has come to visit and my husband helps me regularly.  My children and grandchildren come sometimes to visit but they are very busy.  In the meantime I try to do something for myself as frequently as I can.  Yesterday I got a manicure and pedicure and took myself out to a leisurely lunch.  The saga continues.