Category Archives: Alzheimers Sucks

My family’s journey in my mother’s final years

Reunions past and present

We recently attended my extended family’s 2nd bi-annual (every two years) reunion;  we all stayed in a very large, sorta creepy, old, sprawling house –complete with secret passageways and a servant’s staircase leading to the kitchen.  There were about 20 of us at our ‘peak’ attendance, ranging in age from my 88 year old dad to my 2 year old grand-daughters.

Mostly, it was a lazy time together.  We were awakened each morning by the youthful enthusiasm of my young nephews as they ran up and down the long upstairs hallway; their attempts to muffle their joy to  let us old folks sleep were not the least successful.  My brother and his wife made us a huge breakfast each morning; it was quite a treat to find coffee, eggs, sausages and waffles upon a leisurely arrival in the kitchen.

“Grandpa” Dan and I had to share the grand-daughters with their aunts, uncles and cousins, all of whom were smitten by X1’s charm and by X2’s determination to NOT SMILE, despite everyone’s silliest attempts.  Eventually X2 would reward us with a beautiful shy smile, usually with grandpa kiss-tickling her neck.

Our last reunion, 2 year ago, was bittersweet due to my daughter, Guzzy’s,  anorexia and our mother’s advancing Alzheimers.  I carefully monitored and measured and administered Guzzy’s food for three meals and three snacks a day.  Food was the medicine she desperately needed and also desperately resisted.  Although my family did not really understand her disease, they surrounded her with love, and the event gave her some temporary respite from her ED fog.

My mother was angry and mad at us all; she really thought we had pulled a mean trick on her by bringing her to this strange place without telling her what was going on.   It was both tragic and comedic as she lashed out at Dan:  “This is the most terrible thing she’d ever heard”.  Poor Dan.  Poor mom.

That reunion gave us the opportunity to have a serious talk with dad, during which we all agreed it was time that mom live somewhere that was better equipped and staffed to deal with her severe dementia.  It was a sad, but loving, conversation.

Fast forward to earlier this week:   My mother is no longer with us–and while we miss her, we are glad she is now at peace.  Guzzy is healthy and ate just as many S’mores as her cousins, without batting an eye.

Life is good.

Mother’s Day: A wish for my Mom

Mom:  It is our first mother’s day since your passing.  However, it is not our first mother’s day without you.    We lost you to Alzheimers well before we lost you to death.  You lost yourself while your body still lived.

When you left this earth, you also left the fear and confusion of your disease.  My wish for you is that your soul is at peace.

The Vigil – Final Chapter

Thursday, Jan. 1st.  We did not think mom would live to see 2015.  Mom has been much the same for the past week– unresponsive and near death.  She has not had anything to eat or drink in  two weeks.  I hold her hand and gently sing to her.  Her breathing is shallow with many periods of apnea.  I spend an uneventful night in her room.

Friday,Saturday:  More of the same.   My brothers, dad and I all visit regularly – but no real change.    My oldest daughter expresses that it seems odd to be going about their family’s holiday schedule  even as grandma lay dying.   Life goes on, even as we grieve.

Sunday, January 4:  Family is with mom throughout the day. She slips away peacefully in the late evening.  My dad, husband, brothers,and  sisters-in-law all gather at Hospice.  While there is sadness, the prevailing sentiment is relief.  She is (finally) at peace and free of the suffering that has dominated her last years on earth.   Many of us believe she is in a better place, free of pain and suffering.  My brother conjectures that maybe she can lobby for the rest of us to join her in heaven some day.

We sing Amazing Grace as her body is ushered down the hall onto the funeral home vehicle, with our long-distance sister singing along via phone.

Rest in peace mom.

The Vigil

Warning:  If you are uncomfortable with end-of-life narratives, you should not read this.  It is my diary of the time (thus far) that my mother has been in hospice.

Friday, Dec.19th:  Mom is extremely ill and the test results are grave.  There are no good  options.  Her quality of life has degraded from awful to hideous in the past few weeks.  We all fully support (and agree with) dad’s decision for palliative care.  Mom is transported from the hospital via ambulance to Hospice.  As he makes sure mom is settled properly, my brother reports that the place ‘reeks with peace’.

Saturday, Dec. 20th.  An urgent call from hospice hastened our journey to mom’s bedside.  Mom was quickly surrounded by family: her husband, children, many grand-children and assorted in-laws.  It was a veritable love-fest.  Her room at Hospice is spacious, and there are several common areas and family lounges at Hospice;  making it possible for this large group to spend the day together, taking turns at mom’s side.  It is also my son’s birthday.

It was a day of tears, laughter and joy.  Joy of a shared history and reminiscence of a life well-led.  Mom rallied and had several moments of connection with several of us, offering us a few precious smiles and occasional words.  She is comfortable and seems to be at peace.

Sunday, Monday, Tuesday:  Mom is less and less responsive with fewer moments of connection. Hospice modifies her medicine to reduce troublesome twitches and spasms and apparent bouts of pain.  It is difficult to gauge her discomfort or pain level, since she is unable to communicate.  My brother spends a couple days and nights at Hospice-on the pull out bed in mom’s room.

Mom is heavily sedated  with rare moments of semi-consciousness. We talk to her and hold her hand, not knowing what she can hear or understand.  I believe that the Alzheimers contributes to her sense of disorientation and fear during her few wakeful moments–she has no idea where she is or why.  Each period of wakefulness may come with the realization that she is very ill and that she is dying. Her comfort is our primary concern.

Wednesday: Christmas Eve   I play and sings some traditional Christmas carols on the piano at Hospice; using a very old music book that was once mother’s.  Several staff and family members thank me, since they (like me) are at Hospice instead of at church this Christmas eve. Dad spends the night at Hospice.   The prolonged waiting and watching is painful for everyone.

 Thursday: Christmas Day:  The report from early in the morning is that mom is unlikely to survive the day. I bail on my husband’s extended family Christmas and spend the day in Hospice along with my brothers and father. We play Apples to Apples at her bedside.  As an answer to the clue  ‘pathetic’  I write:  “Spending Christmas in Hospice.”  I spend an uneventful night in her room.  Once again mom has beat the predictions.

Friday, Saturday:  One or both of my brothers and dad are with mom throughout the day and nights.  I find a need a respite: I visit for a few hours each day.  Saturday is Dan’s birthday and we go out for dinner with friends.

We learn more about the effects of dehydration.  Mom has not had any fluids (other than a few drops at a time to keep her mouth moist) for over a week.  Hospice and other research assures us that there is little or no discomfort — particularly at this stage of the dying process; and particularly when accompanied with pain medication.   Thus far there have been three false alarms from the Hospice medical team warning of mom’s imminent death; but she breaths on.

Sunday, Dec. 28:  I spend the day at hospice, and as I write this I am preparing to spend another night with mom. The silver lining has been the connection with my dad and brothers throughout the day.  Dear God, please let this be over soon.  It is more than we can bear.

Monday, Tuesday:  More of the same.  My brothers and I all have jobs and I have not been spending time with my daughter, Guzzy–we cannot continue to sustain a round the clock vigil.  We learn about a volunteer vigil program; and arrange for some volunteers to be with mom at night.

Bittersweet Reunion

Yesterday my mother was moved to hospice care and this weekend the extended family is gathering to say our good byes and to be with each other.  Mom has lived a long full life. While her imminent passing is sad, it will also be a blessing.

My dad has been mom’s primary caregiver and advocate for the years of her illness–and he has been faced with many heart-breaking decisions.   The gathering of the clan, with its aura of love and caring, should help ease his pain in these dark days.

The other night was most likely my last visit with mom when it was just the two of us.  I held her hand and sang to her gently, with tears streaming down my face.  Her eyelids fluttered, and she lifted her free hand to me (perhaps she was just trying to get me to stop).  All in all, I feel as if I have said my goodbyes.

When I picked my sister up from the airport yesterday she commented, ‘I wish I were because someone were having a baby or getting married!.’  This is a bittersweet gathering indeed.

Mom will be alive in all of us and in our memories.  For myself – I will remember her when I hear certain songs, when I eat fudge (her specialty) and when I look into the innocent faces of her great-grand children.  She will be remembered.

 

The Passage of Time

I saw mom today.   Since we were out of town last weekend, it has been two weeks since I last saw her; and those two weeks were not kind to her.

Alzheimer’s is a wicked nasty disease.  It has turned my very intelligent, talented and articulate mother into someone I barely recognize; someone I pity; someone who requires round-the-clock care;  someone who alternates between anger, confusion and a quiet resignation.  Very soon (we may already be there) she will not be able to tell us if she is in pain or hungry or needs to go to the bathroom.  Care-taking has become something of a guessing game.

She is in a good place and receives high-quality care from the Memory care staff and by her loving husband (my father) who sees her every day and takes her to all of her Dr. appointments. Despite all of that, it is hard to think of her as being fortunate.  Alzheimer’s is a persistent and relentless diminishing of life’s essence.  What is left of our personality, of our being,  of our very soul when we can no longer recognize or relate to the world around us?

I have other friends whose parents had or have Alzheimer’s.  Part of the fear is the knowledge that a certain percentage of us will also become afflicted as we age. We talk about quality of life and how we would not want to live beyond a certain threshold.  Obviously, defining the threshold is tricky and defining contingency plans should the threshold be reached is even trickier.

For mom: we keep her comfortable;  we rehash old memories; we hold her hands; we take her for walks; we sing to (or with) her, we bring some cheer to her days with pictures and videos of the great-grandchildren that she does not remember holding.   It is not enough; yet it is all we know to do.

Visit with Mom

This morning we ‘fell back’ retrieving the extra hour of time that we lost with Daylight Savings time last spring.  It is  interesting to me that we make such a hoopla regarding our tracking and measuring of time;  although none of it has any affect at all on the sunrise or sunset;  it’s simply an illusion of control in how we choose to apportion and measure the allotted day light hours;  which are all too scarce this time of year.

I spent my ‘extra’ hour visiting my mom at her Memory Care facility.  She was calmer and more conversational than I have seen her for several months.  While she doesn’t recognize me, she is always happy to see me.  We sat in her room and visited.  At one point she announced with a great deal of animation and gesticulating:  “that man stepped so far out onto the penny that POOF!”; to which I responded with an appropriate degree of wonder at such a thing.

I brought mom a milkshake.  Someone once asked if me if I wasn’t worried about ruining mom’s lunch… are you kidding me?  If I’m ever in her position,  I HOPE my children or grandchildren will regularly sneak me some cheesecake, for which I will gladly (if not wittingly) forego yet another serving of steamed broccoli and baked cod. Mom grew up helping to run the family dairy in Minnesota, and she has always enjoyed ice cream, milk and dairy products.  I usually bring mom a treat when I visit; and my brothers are always encouraging me to leave a large box of chocolate covered turtles, which they particularly enjoy.

I showed her pictures of her great-grandbabies in their adorable Halloween costumes.  One was a ‘scary’ cupcake and the other was a ‘scary’ strawberry.  She enjoyed the pictures and agreed that there was absolutely nothing scary about either of them.  When I commented that I played tennis recently she announced:  “oh, I love to play tennis too, but no one will play with me!”.    Despite the absurdity of the comment, it was within the context of the conversation, representing a rare moment of connection.  Also, the mental image of mom playing tennis made me smile.

All in all, an hour well spent.

Singing with Mom

My mom loves music.  Throughout the years mom was a musician, a self-taught pianist, a church choir director, a composer, a first-class soprano soloist, a piano teacher, and a High school music teacher.  In addition to her many musical talents, mom was what they used to call a ‘smart cookie’–She was the salutatorian of her High School class and Valedictorian in college (or vice-versa).

Today mom couldn’t spell ‘CAT’ if you spotted her the A and the T.  While she is always happy to see me, she tends to think I am her sister–which is fine with me, at least it is someone she thinks of fondly.   Continue reading

Alzheimers at the Family Reunion

Last summer my sister, Barb, arranged a family reunion.  This is ironic, since she is the only one to have moved out of state from where we were raised.  At a young age she moved to Colorado to seek her fortune, while the rest of us stayed hunkered down in the frozen tundra of Wisconsin–fools that we are.

It was a lovely gathering in July at one of Wisconsin’s many picturesque and lovely lakes.  There was one large house and a couple smaller cabins.  My husband and I stayed in a cabin with  my parents; and Guzzy stayed in ‘the big house’ with my sister’s family, including her same-age cousin.  More on this later.  In addition to Alzheimers, Ana (Anorexia) was also a guest at our reunion. Continue reading

Mom and the Card Gene

My mother’s card and game playing abilities were infamous in our family.  My siblings and I grew up on a steady diet of board games and card games.  Mom was never the kind of mother (or grandmother) that would ‘let’ a youngster beat her at a game of cards.  While she would never exactly gloat… she got a lot of satisfaction out of her skills.

I firmly believe that you can always tell if someone grew up playing cards–you aren’t exactly born with the card-playing-gene; but you get it from your family.   Continue reading