A Caregiver’s Journey

We visited my mother-in-law today.  She was staring at her wedding picture on the wall just beside her.  She turned to my husband and asked who the man in the picture was.  She did not know or recognize that the man in the picture was her husband of 60 years, and that day, that particular day, was their wedding day in Feburary 1945.  My husband then asked her if she knew who he (her son) was, and she didn’t.  Guessed that he was Willie, her brother.  Didn’t realize that she was talking to her own son.  Forget that she didn’t know me, her daughter-in-law of over 25 years.  I am well off the horizon now.  And I thought on the way home, how stressful that was for my husband, and how incredbly sad that his mother did not even recognize him.  We came home and went for a long bike ride - the fresh air, the warm breezes, and newly oxygenated blood rushing through my husband’s veins helped relieve the earlier day’s stress.  Try it - try something - anything to refocus your energies, your mind.  It helps….

Yesterday my husband visited his mother.  She was unusally engaging, but at one point she looked straight at my husband and said, “I really wish I had family in the area.”  My husband is her only child…Did she recognize him?  Did she mean family, i.e., cousins, siblings, etc.?  Did she not consider her only son her “family”?  We’ll never know, because she won’t remember the conversation the next time they meet.  And if she did remember the conversation, there is no way my husband could have a meaningful exchange with her. Stress?  Emotional, not physical…it takes its toll. 

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Are you finding that you often feel overwhelmed? Do you feel “sandwiched” between your parents and your children? Or perhaps you are caregiver to a spouse, a partner, a grandmother… When do you take time for yourself? If you find you can’t set aside 30 minutes a day, try this: 10 minutes at a time - take a short walk, do some breathing or stretching exercises. If you can’t sleep at night, try a glass of warm milk and take a few minutes to read a very boring piece of literature. Avoid exercising late in the evening - it will just serve to keep you awake. Remember that you can only help your loved one by staying healthy, and that means devoting some portion of your day to yourself!!

As a caregiver, how are you managing your stress levels?  If you were like me, you might have found that there were days when you just felt overwhelmed.  I remember one day just putting my head in my hands and thinking that I just couldn’t handle the myriad of issues with which I found myself dealing - selling my mother’s home, disposing of her possessions, finding an assisted living facility, overseeing her medications, selling her car, helping her with therapy.  Did I remember to buy her favorite cookies?  She needs a private duty nurse?  What for?  Isn’t she in assisted living?  Her hands are shaking - what could that be?  Another call to the doctor.  Why doesn’t he return my calls?  Her blood pressure is WHAT?  What price do I want to ask for her home?  I wasn’t trained for this!  I learned, as I hope you will, to take some time for myself - albeit ever so little - I tried to walk every day, I enrolled in a yoga class, and I took up piano lessons - all in a relentless attempt to deal with my ever-increasing stress levels.  Did I have time?  I had to MAKE time….I was fortunate that my mother was in an assisted living facility, but for those of you who have your loved ones living with you, it is even more difficult to find time for yourself.  Enlist the help and support of friends and/or other family members - remember, you can’t help your loved one if you can’t  first help yourself!

A visit to my mother-in-law.  Says she feels great - no aches or pains to complain of.  Not five minutes later, she grabs her arm, wretching in what she perceives is pain.  “Where is the nurse?” she demands.  I am in agony.”  Is this real?  Her arm was xrayed just last week - no broken bones.  Perhaps a sprain?  An osteoporotic fracture from a minor fall she took several days ago?  We don’t know.  We just know we have been down this road before.  A mother-in-law wincing in hip pain, lifted onto a gurney for a tortuous ride to the emergency room just a few months ago.  Not 3 hours later, she got up from her hospital bed, walked down the hall by herself and announced she wanted to go home.  No sprains, no broken bones, no fractured hip…and she never complained again.   So do Alzheimer’s patients perceive pain as we do?  How do we respond to her?  We will watch and wait…we cannot let her suffer, but then, is the pain physicial, or just perceived by her demented mind?  So sad, so terribly sad… 

Another visit planned to my mother-in-law today.  What will my husband find today?  Where she used to be watching television, or even reading a newspaper, he usually finds her in bed now, often not asleep, just laying there in the light of day.  I’m not sure she even knows how to turn on the television anymore, and I doubt that she could follow a program for any length of time.  My husband will come home depressed, saddened at having to watch his mother live in her own private hell.  How long will this go on?  She is 89, and in her 9th year of diagnosed Alzheimer’s.  Sometimes she closes her eyes or hits herself on the head, as if that will help her remember.  It never does….How incredibly sad that her life has come to this, and we are mere observers as she retreats more and more into herself.  Will she know her only son today?

By the time my husband realized that his elderly dad was suffering from depression, it was too late.  It had taken his dad down, one little step at a time.  It wasn’t much at first, just little hints that we paid scant attention to.  He showed little energy; he had no real zest for life.  Then, the loss of weight - 22 pounds in less than 3 months.  Little appetite.  Dull abdominal pain that couldn’t be explained by any physician.  Sitting in the darkened family room, rocking away in his recliner, and staring into space, when just outside his door were gentle breezes and an inviting sun.  It was all there - we just didn’t see it…Just 2 days before he shot himself, he pointed to his head and said, “There’s something wrong with my brain.”  And yet, even then, we didn’t act soon enough…could we have made a difference?  

Just a few days before my elderly father-in-law took his life on a warm November morning, my daughter sent me an email.  A trained family counselor, she warned me that her grandfather showed signs of clinical depression.  “He might be at risk of suicide,” she warned me.  I shrugged it off, deleted the email, and went about my day.  I knew he was depressed….but enough to take his life?  I watched him sit in his rocking chair on sunny afternoons with all of the blinds closed…I watched, and my husband watched, as my father-in-law’s doctors prescribed oxycontin, ambien, and Vicodin medication to treat his non-specific, abdominal pain and his inability to sleep.  Every test, from blood samples, to endoscopys, to CT Scans were negative.  And now we know - his pain was psychosomatic, yet another symptom of his clinical depression.  Why didn’t we see it?  Were we powerless to act?  Was there nothing we could have done?  Had his wife, my mother-in-law, sunk so deep into the throes of dementia that she couldn’t recognize the symptoms that are now so obvious to us?  And the 31-year old physician who was treating him????  Where was he?   

November 5 will mark the 5th anniversary of my father-in-law’s death.  He took his life on a beautiful, warm autumn day, an otherwise uneventful morning marked by nothing more than rush hour traffic that could be heard a few hundred yards from his home.  His lifeless    body was found by the side of the house, lying beside a trash can.  Finding him there perhaps spoke volumes of how little he valued his life.  What was it about that particular day, that sunny, gorgeous fall morning with not a cloud in the sky that made him go over the edge?  Why would he leave his only son to wrestle with the ravages of a terrible disease called Alzhiemer’s, that was taking his wife down savagely, bit by bit?  And now, 5 years later, my husband and I still wrestle with the answer to that question.  I am afraid and sorrowful that we will never know the answer…We will never have closure… .  To those of you who are listening…heed the call…if you see signs of depression in your loved one…seek help from those who are trained to give it…for you, I hope for a better ending…. 

Today my husband visited his mom, and as she sat in her room, she looked up at the wedding picture of her and her husband that was hanging on the nearby wall.  “Who is that woman in the picture?”, she asked my husband.  “It’s you, Mom,” my husband answered her.  “It was taken of you and Dad on your wedding day.”  “Oh,” she replied, and continued to stare blankly into space.  And a few minutes later she once again turned to my husband and asked, “How did my husband die? I think he was killed in an automobilie accident,” she said.  “No, Mom,” Dad killed himself five years ago….” And once again there was no response from her, she just went back to staring into space.