Exhausted

I saw my mom and uncle yesterday.  Nothing has changed in either of them which is a blessing.  Yet, I am totally exhausted.  I'm not wishing for any change because that could spell a major decline in either ones health, but I wish someone else could shoulder being the person in charge once in awhile.

My uncle says that the tedious routine each day is just mind-boggling.  I see it the same way, but from my perspective.  I have been visiting him in the nursing home for over 5 years and we virtually repeat the same routine each time I go. Only now, it includes the rituals that have developed since my mother is now a resident.  I am easily bored and although I try desperately to alter the conversation or minutiae, we basically follow a script for each visit.  The only thing that changes is their ability to respond to me.

I am just exhausted!  The trip to the Bronx, the parking, the actual visit, the heavy feeling in my heart when I leave them ( because of the sadness on their faces when I say I must go home), the feeling that I'm just not doing enough, and the trip home including the lane closures on the bridge are all wearing away at my stamina.  I don't blame them.  I visit because I want to.  I visit out of love and devotion and the desire to provide some remembrance of the life they both had before the nursing home.  I visit because I generally feel better after doing the mitzvah.  But I am exhausted.

How Many More?

I went to visit mom and uncle a couple of days ago.  I found mom eating her lunch but struggling to chew.  She didn't explain, but I finally found out that her dental bridge is missing ( it probably got lonely for all the hearing aids).  She also has several broken teeth, so of course she's having trouble eating.  She didn't remember what happened to the dental bridge, and the nurse was absolutely NO HELP!  She told me that she asked mom about her teeth--did she have any pain, etc., and was told to leave her alone. So, that's as far as she went with that.  She didn't call us, didn't schedule a dental visit, or even think much of the entire thing. So much for involved and caring personnel.

I now asked that a dentist see her and plan to fix the teeth that can be saved and make new dental bridges and/or dentures.  I would like to be at the home the day the dentist gets there, but I'm pretty sure nobody will tell me when that will be.

The appearance of my mother with broken teeth and missing dentures just broke my heart.  She looks like a homeless person who has no one to care for her.  She looks BROKEN. I know it's only teeth, and she always hated going to the dentist and avoided it whenever possible, but it fits in with the question I keep asking.  How many more indignities will need to be suffered?  How many more times will the essence of who my mother always was be eroded away by the combined assault of dementia and the impersonal element of institutional living?  In themselves the teeth are a small piece of the changes mom has endured and we have been forced to witness, but it's a visible sign of all the hidden tangles that now mark my mother's life.

Her teeth may be replaced artificially, but the hole in my heart will stay forever.

The Great Hearing Aid Mystery

About two months ago my mother's hearing aids were "lost." After she diligently handed them to the nurse in the evening, they mysteriously disappeared.  We scheduled an appointment with the audiologist and new hearing aids were made--covered by rather expensive insurance.  The nursing home's director promised to repay the $360 for the insurance and I brought the new aids up to Mom.  When I asked for the old case back, lo and behold, there were her old hearing aids!  A great bruhaha developed as I made it clear that I was not pleased with the handling of valuables by the staff.

Three weeks ago, my uncle's right hearing aid disappeared.  It had also been given to the nurse for safekeeping overnight, and somehow left the building on its own! Once again I spoke to the nurses, aids and finally, the director, who promised to repay the insurance money (that still hasn't been paid for Mom), and  the replacement cost of my uncle's lost aid. The nursing home scheduled an appointment with the audiologist.  Then, my uncle was hospitalized.  When he returned to the home, I received a call from the audiologist requesting payment for the hearing aid that would be ordered.  Long story shorter, now the nursing home director is backpedaling and told the audiologist that he has a fiduciary responsibility to not spend the $2000 replacement fee for the hearing aid.  So, this is where we are now.  My uncle still has not received his hearing aid; I refuse to lay out the money because I know that the nursing home will never repay us; Mom's insurance money has not been reimbursed; and I am losing my mind. (or what is left of it!)

Why should keeping hearing aids safe overnight be such a challenge?  Why won't the nursing home take responsibility for their shortcomings?  Why should old people be robbed of one important sense due to shoddy practices? Why am I spending too many of my waking hours chasing after hearing aids and the money needed to replace them?  Why?  My mother used to answer such questions thus:
"Because "y" is a crooked letter".  That never made sense to me before, and it doesn't now.

Can I Keep My Sense of Humor?

I had a conversation with a friend this morning about maintaining a sense of humor on the days that I visit the nursing home.  She also had a parent who lived in a nursing home and understands the tedium, anxiety and sadness that comes from the nursing home environment.  BUT, her mother didn't have dementia and died at 99 years old!

Today was one of the days that I needed to see the humor, but it escaped me.  My uncle was upset because his nightly routine was disrupted last night. He was concerned because he wanted to get an important set of paperwork signed.  Mom was upset because she was very tired and wanted to sleep.  Instead, I tried to keep her awake in order to guarantee a good night's sleep tonight (if she sleeps during the day, she is up until the wee hours of the morning). I also added the suggestion of a hair salon appointment that was definitely needed. I sat in the dining room listening to the litany of complaints and finally tried to convince Mom to get the haircut.  That's when she literally dragged her feet and prevented me from pushing the wheelchair!  It was classic 2 year old temper tantrum material that was accompanied by loud protests and barbs at my devotion as a daughter. Add my uncle's shouts of "mama" to the chorus and I should have been laughing--it didn't happen! I should have remembered my daughter-in-law's smile when she reminded me that I could be doing this for another 18 years! (This is an inside joke, but it does lighten the mood somehow).

I am really working on the humor thing--can I see their behavior as a valiant effort to maintain some control over their lives?  Can I also see that I am the only one who tends to their needs so I'm the one who hears all the complaints?  Can I stop seeing myself in their position long enough to also just laugh at the insanity that permeates the institutional existence?  I need to really laugh, because otherwise I just need a good cry sometimes.

"This is the Bread of Affliction"

The Haggadah tells us that matzo is the bread of affliction since it reminds us of the hurried way the Jews needed to leave their days of slavery in Egypt.  Of course, the argument could be made that it is also the bread of freedom, since the Jews ate it as they fled their bondage.

Yesterday I attended the Seder at the nursing home.  The tables were set with flowers and lovely table linens as a Cantor led the luncheon.  It should have been a wonderful time for me to share with my mother and uncle-- a way to connect and celebrate yet another holiday the way we have done all my life.  Unfortunately that wasn't the way it went.  Mom was very grouchy and not feeling well.  She was angry about her seat, angry because her hearing aids are still not ready from the audiologist, and angry because she felt rushed even though she got up and ate breakfast at 11:00 AM.  My uncle was very tired and unable to hear the Cantor.  So, they both slept through most of the meal and complained for the other parts of the time.  There was absolutely no way to make them happy though I did try-- I really did. This meal was nothing like the loving times we've spent together on holidays in the past!

I just read an article that states that people with dementia are possibly angels sent by G-d to remind us of the fragile balance of our lives.  The angels are freed of filters that stand in the way of spirituality and acceptance of G-d's will.  If this is true, then there were so many angels at the Seder yesterday! The frustration the Cantor felt for the inattentiveness of his audience and my own feelings of loss should be tempered then, by the understanding that we needed to be in the presence of these angels for a reason only G-d understands. I truly hope the article is right.  Otherwise I can't find a single reason to attend next year.  Mom didn't remember that I was there and my uncle missed most of the time anyway.

So, yesterday the matzo represented affliction.  The affliction of old age, dementia and failing health. But,  it also represented the freedom that will some day come to those angels in attendance.  For the rest of us, it was the bread of ancient ritual and tradition still shared with treasured family members.

A Life on DVD

A graduate student spent months interviewing my uncle for a project about bridging generations.  She became so attached to him that she extended the project and gave countless hours to interviewing him and videotaping his responses.  All of this culminated in a loving tribute-- a DVD of Frank's life that was presented at the nursing home yesterday.

We were invited to the event and Mom and Frank just drank in the walk down memory lane as pictures and interviewed clips flashed on the screen.  Of course, true to my uncle's personality there were "embellishments" on his life--specifically, his description of his bomber missions during World War II.  He was NEVER A PILOT--truth be told, he gets sick on an airplane, and spent all of his time in the service behind a desk in Kansas and Tallahassee, Florida. He even elaborated, and claimed on camera that his tiger eye ring was a gift from the Queen of England for extraordinary service, instead of an anniversary gift from my aunt!  I guess he felt the need to change an ordinary life into an extraordinary life.  That being said, it was still wonderful to hear him lovingly describe his life ( and my mother's) as they grew up.  It was touching to see pictures of him as I remember him from my childhood and to also see my grandparents as young people.  Mom was especially touched by seeing these pictures and listening to Frank's answers to Linda's questions about the past.  I truly believe that she remembered many of the events as he spoke of them, if only for a brief moment.

We expected to just endure a tiresome showing of this project.  However, I couldn't have been more wrong.  I will cherish the time that I was able to share this with Mom and Uncle and I look forward to getting a copy of the DVD so I can review it in the future. Well done, Linda--you truly bridged the generations!

Looking at a New Year

Today is the last day of 2012 and people get sappy about the year that has gone by while they make resolutions that frequently are not kept.  I will avoid all of that.  I will revel in the fact that my mother still knows who I am when I visit.  I will take note of the happiness I see on her face when she asks me about our family--though she asks it over and over again in a single fifteen minute time period. I will hope that the new year finds me able to continue to visit and bring news of the outside world to my mother and my uncle.  Finally, I will think about the years that my mother and father lovingly cuddled on the couch as they watched Guy Lombardo on New Year's Eves.  Their total devotion to each other and lasting love is what I hang on to.  It is not something that "should be forgot" as Auld Lang Syne says, but rather, it is what gives me hope of a good New Year for our family.  I believe that somewhere in the tangled neurons of Mom's brain she still basks in that love that sustained her and gave meaning to all of our lives.
Happy New Year!