Saying Goodbye

Mom passed away on August 16th at 8:40 AM. We were not with her, but a trusted aide was. We had been at her bedside for many vigilant hours and yet no family member was there to hold her hand as she left this world. Perhaps she willed that to be the case, or the high fever from the pneumonia dictated the end-- either way, I hate to think of her being alone.

We had a very respectful funeral filled with beautiful eulogies by three of her grandsons,
and me. We followed the traditional Shiva period, and will say Kaddish for her. But, now the real work begins. There are only a few loose ends and then what?  Everyone returns to regular life schedules but the profound sense of loss is daunting. Who else will ever love me so unconditionally, or understand my facial expressions and needs the way my lifelong friend/my mother, was able to do?  Who could ever say volumes with a twinkle of a blue eye or share an inside joke the way that she could? Who else will spend sleepless nights thinking about a solution to something that bothers me? The answer is there is no one to take her place. She was everything I needed when I was growing up and she transitioned so aptly to being a cheerleader, friend and confidant when I was grown.  Of course dementia robbed us both of the last six and a half years, but in that time I hope I was able to calm her fears and honor the devotion she always gave me with the love and care I provided. It will never feel that I did enough since she spent the better part of her life giving me her all and my meager 6 years can't compare.

I know she loved me, and I know she understood the depth of my love for her. It's just that saying goodbye is not easy. I try to take comfort in knowing that she no longer has to meet the indignities of dementia or suffer. I know that she was loved and respected by so many who knew her and I know that her lessons go on through me to the next generation. I just think I would never be ready to say goodbye and yet, I have no choice.

Mom, I will love you and miss you for all the days I have breath. Rest in peace❤️

One Day at a Time

Mom developed pneumonia a few weeks ago and as you could guess it has weakened her terribly.  She was on two IV antibiotics and IV dextrose.  She was unable to speak, had trouble breathing and deteriorated so badly that I was asked how aggressively we wish to treat her.  I signed a DNR and DI ( do not intubate).  My brother and I were asked to consider a PIC line in the hospital because she kept pulling out the IV, but we resisted that.  We hesitate to hospitalize her because she would only become more confused, would have less attention than she now gets from nurses and aides who know and like her, and she might pick up another infection. I have since requested hospice care and she qualified.  We understand that hospice doesn't mean that death is imminent, but it does mean that she has lost a lot of ground from this infection and it is likely that she will not fully recover.  We are hopeful, but realistic.  She's 91--has dementia, macular degeneration, and is deaf.  Her quality of life has been deteriorating on a regular basis and it is painful to watch her lose more and more of herself in the process.

I find myself depressed and angry.  She was always so respected for her ability to think intelligently that this indignity seems grossly unfair. It is daunting to see her so diminished. Of course at 91 the body eventually wears out. I hope she can recoup some strength, but being realistic means facing the quality of her life, and my wish is for her to not suffer. I think she was right when she said "Getting old is not for sissies."

We're Singing a New Song

Mom often sits in the hallway in front of her room these days.  She often sings.  The songs she sings are not really recognizable melodies, but rather, a combination of musical tones.  This can be comical or enraging.  When I visit, I try desperately to make conversation.  It is nearly impossible to talk to someone who is singing and making up music.  When I've asked Mom what she's singing, she just shrugs and says, " just a little ditty I just made up".  The last time I visited I decided to try something different.  I just began singing " You're a Grand Old Flag". " Yankee Doodle Dandy", " If I Were a Rich Man" and "Old Susannah".  The results were amazing.  Mom joined in and sang with me.  There were times that she didn't know the words, but then remembered them if we sang the song a second time.  It was incredible to hear her join in on old songs that she used to play on the piano and I believe it worked to reignite a few languishing brain cells, as well.  The nurses and other residents also seemed to enjoy our little "songfest" so now I think I will always bring the words to old familiar tunes with me when I visit.  It makes our time together more enjoyable and may take the place of music therapy that is not available on a regular basis.
Mom always loved music and used to sing show tunes while she did housework--I think those musical pathways are still alive, and I will do everything I can to enlist them when possible.
Dementia is not only a change in the person afflicted.  It changes the entire relationship.  So, now we make music together--not a bad way to spend an afternoon with someone you love.

Happy Birthday to me

In case anyone thinks that I am too often negative about my experiences with my mother, I feel compelled to document a really good day with her.  On June 3rd I became eligible for Medicare!
 ( Oh, my G-d... how did that happen?).  My brother and I met for lunch and then went to visit Mom.
She was so happy to see us!  She was brought to tears of joy and told us how happy she is when we are both there with her, together.  She asked each of us how we were spending the rest of the day.  I told her, first, that it was my birthday and she wanted to know how old I am.  This is what followed:
Mom:  How the hell old are you now?
Me: I'm 65
Mom: Holy Shit... how did that happen?  I must be a really old bag if you're 65!  You really don't look it at all.
                      ( Have I told you how much I really love this woman???)
Mom:  If you're 65, then how old can I be?
Me: Well, you're 90
Mom: Oh G-d!  I really am an old bag.  I guess I'm doing okay-- so many people my age either aren't here at all, or they're in really bad shape--not able to walk or feed themselves or know where they are.

Later on, she asked my brother how old he is and how he was spending the day.  He explained that he spent the time with his sister--went out for lunch and  that it was nice to spend my birthday with me.
This followed:
Mom: So how old are you?
Brother: I'm going to be 62 in October
Mom: Holy cow!  My baby is almost 62?!  Time really does have a way of going, doesn't it? I'm really an old bag aren't I?

The rest of our visit was spent with the usual repetitions of questions about our families and the weather. She was very emotional and teary when we needed to leave, but at least we managed to leave without a scene or anger.
My birthday was really a good day.  Mom was at the top of her game--funny, engaging and able to converse.  My brother and I left there feeling happy to have shared those precious moments with her, and with each other.  Those moments are fleeting as the days and years fly by, so we will hold on to them with both fists.
Thanks, for helping to make my birthday a really good day.

Mother's Day + 1 week, 2015

Why has it taken me an entire week to write?  This Mother's Day was so different and difficult that a week may still not be enough time for me.

I was full of anticipation for this Mother's Day.  I was expecting to be enchanted by our beautiful granddaughter--welcoming her into our loving family circle and looking forward to all the moments yet to be shared.  All of those hopes and dreams were dashed by her polycystic kidneys and her death at only five weeks of age. The tragedy of the recessive gene and the irony that our son analyzes genetic material and research still have me reeling.  Mother's Days spent with a new grandchild are a dream for the future, rather than the present.

So, we went with heavy hearts to celebrate Mother's Day with my mother.  We enjoyed visiting at the nursing home and read her the card/ gave her the new clothes we bought/ sang with her through the musical presentation and felt that Mother's Day was at least spent with devotion to a mother who truly deserves praise and admiration.  Then, it was time for us to go home.  That may seem simple, but it turned into a terrible scene.  Mom thought she was leaving with us.  She was adamant about her need to leave the nursing home and very rationally told us that she is all alone there and has no money.  She told me that I'm a terrible daughter if I leave her there.  So we tried to calm her down and sat with her.  She was not having any of it.  It became clear that the pleasant afternoon was not going to get better if we delayed our leaving.  It broke my heart to leave her while she was yelling at me.  Her Mother's Day was lovely, but ruined by the unfortunate fact that she must live where she does and that I cannot care for her at home.  The changes in our lives and in her mental state ruined a good day.

So, Mother's Day was filled with sadness.  Thankfully, Mom won't remember any of it.  I, however, remember more than I want to.  I will always feel the hole in my heart for our lost Marlowe. And, I will try desperately to recall the days when I made azalea corsages for my mother and that was all she   needed to have a great day.  I will remember the Mother's Days when our boys were small--presenting me with hand-made cards and the hugs that warm a mother's heart.  I will enjoy the phone calls from our grandsons and the grown-up sons who make my day on the second Sunday in May.  I will hope that the future Mother's Days replace the sour taste this one left with me.  I will hope that next year, Mom is happy with our visit and at peace with her present life.

Mom at 90

Mom turned 90 years old on December 2nd.  I think it speaks volumes that I didn't post anything on that day... or for a long while after that.  Her birthday was lovely.  Family members(who were able) and her good friend, 95 year old, Stanley attended a scaled-down party for her at the nursing home.  Mom was in good spirits and very alert that day.  She had a good time, though she was shocked to hear that she is 90, rather than the 62 she thought (When she was asked how old she thought she was, she said 62.  When we told her that I am 64, she laughed and said : "That wouldn't work").

The reason this posting speaks volumes is because along with the good-day celebration, there was such a feeling of loss.  Of course I am grateful to have a good day to share with mom.  I know that at 90 she is doing better than many.  But... I am painfully aware of all that has been lost.  The fact that she no longer really knows that my brother is not HER BROTHER, or that his son is her grandson; the loss of her memory of our father and the life they shared pains me terribly.  Mom lives in the moment.  Her joys and sorrows are not catalogued or archived.  Sometimes I believe this is a blessing.  If she remembered the death of her brother she would be diminished beyond belief--their relationship was a linchpin of her life.  The loss of my father and the pain and anger it generated is also no longer remembered.  She sometimes doesn't even remember that she was married and had children.  But... a family is only as strong as its shared memories.  The bonds that form early in our lives influence all other relationships.  So, the erasure of that history from my mother passes the torch to the next generations to keep those experiences and memories alive. Names on a page in a Family Tree have no real meaning unless someone can tell the story of those people.  This is what makes us unique... that is what family is really all about.

So, December 2nd, 2014 was a good day.  We hope to share many more birthdays with mom.  We hope that on some level we bring joy to her "new normal".  And, we promise to remember and share the family history in order to keep the events in her long life alive for the younger members who never knew her when she was so independent and bright.
Belated Happy Birthday, MOM!

Thanksgiving...but...

This is Thanksgiving weekend/2014 and I definitely have so much to be thankful for.  I have a devoted and loving husband who has shared the last 42 years of my life; we have 3 wonderful and caring sons; 2 precious daughters-in-law; 2 bright and funny grandsons, and a new grandchild on the way in April. What more can anyone want?  As always on a holiday, I am keenly aware of those loved ones who share the event, and those who are absent.  My dad has been gone for nearly 25 years but I feel the void all the time.  My uncle passed away in March and I was missing him, too, as we ate our turkey dinner.  My mother is a resident of a nursing home and unable to come to our celebrations--her absence is the one I felt the most.  She is in a peculiar "twilight zone" of life--she is alive, and yet not part of our family gatherings.  As I prepared the turkey, stuffing, yams, corn bread and apple cake I had her in my mind.  I remember her taking on the preparations for our family Thanksgivings with wonderful results.

So, I am thankful for all the blessings that give my life meaning.  I am also grateful for having a mother who fills my mind with pleasant memories; and who taught me all I needed to know for carrying on the time- honored traditions of holidays celebrated with family.  I missed you Mom, at our table, but your presence fills my heart. Thanksgiving would have less meaning if I didn't have the opportunity to stop and remember you and all I learned from your wonderful example.