Tag Archives: caregiver

The Long Journey and The Destination

31 Jan

I just talked with the staff at the facility and we feel Ernie’s long journey is slowly coming to an end in this life.  He seems to be sleeping most of the time this week and not as interested in food or anything around him.  Last week was a challenging one for me and the staff as we saw him going through a new agitated phase with being restless, anxious, biting us, and simply not at ease.  It was then that I wondered if this wasn’t his own way of trying to “separate” himself from us. 

No, none of us are God and none us  knows when his time is over in this life — but our prayers have been for Ernie’s peace, dignity and for his greatest good all along.  With God’s help, I feel the time is near.  

Interestingly, last night I had a dream about my husband and he was the man we used to know…fully alive and happy and I felt safe being with him as we laughed together on a ride in one of his favorite cars. I awoke smiling as I realized that it had been a long time since I dreamed of Ernie as he WAS.    

Then, I opened a book in my bed stand and found some personal items that Ernie cherished about which I had forgotten:

  1.    A couple of personal notes he had written to me (and to himself) about how much he loved me.
  2.    A Valentine’s card to him from me with a lovely note written, from my heart, about my being by his side for a lifetime.
  3.    A beautiful letter from his oldest son, Dave, who wrote before he passed away, thanking Ernie for being such a good dad and for always being there for him.

After my chat with the caregiver today, I would not be surprised that those precious, personal findings were not an accident.

There is so little we know about this life and beyond but my belief is that we have the power to communicate at all levels in many ways.  I feel blessed that I got these messages.

A good friend, who has walked this road with her husband’s dementia, called me after reading my email/blog and set my mind at ease with her wisdom:  His agitation is his telling you that he is ready to move on.

It’s been a long journey.  And yes, I feel a bit frightened about his next step but I also feel more prepared.   Most importantly, though, I feel at peace that Ernie, himself, is now ready to move on.  My prayer is that he transitions bravely, peacefully, painlessly and feels the love surrounding him.


More Than Words…

19 Mar

Ernie is speaking “word salad” these days.  There is no logic to his words yet he often speaks with energy and expressive body language.  He seems to know exactly what he is saying and I pretend to follow.  I have learned to laugh at his stories and agree with his muddled statements as he points to something I don’t see or recognize.  His verbal attempts give me mixed emotions:  Joy from his fervor and desire to talk; and sadness over the devastating loss of his well-educated Cambridge vocabulary.

My husband is losing ground and I see his disease taking hold of his ability to connect more and more.  Each week, I see him going downhill and I am frightened.  Last weekend, I decided that I wanted to try to bring him home for dinner — perhaps for his last visit.  I am so glad I did.  Although he showed little recognition of home, he recognized Missy, our cat, and sat down on the bed to pet and “converse” with her as he used to do.

Ernie seemed relaxed as we had dinner at our normal places at the table and silently enjoyed being together.  After dinner, we joined Missy on our bed — where Ernie seemed most comfortable.   I yearned to hold him and tell him how much I loved him and did just that.   Ernie responded as if he understood every word and held me tightly.  Our eyes met and I cried and thanked him for being the wonderful husband he had been to me.  He answered with a tear in his eye in a sentence that made no sense but was loaded with love and affection.  He understood.  We deeply connected without the need for words at that moment and seconds passed in silence. Then, surprisingly,  Ernie turned to me and stated in perfect English, “We love each other in a very nice way.”

I am not sure Ernie will remember last night but the connection we shared and his well-spoken, heart-felt words that found their way to me at that moment  will remain in my memory for the rest of my life.  I don’t understand what exactly happens to the brain with Alzheimer’s but I do know that love still remains in tact no matter how much of the cognitive piece is gone.   Love is energy and feeling and means so much more than words.

If For a Moment in Time….

5 Dec

Last night gave me that moment in time that I thought was gone forever. For a short time, the clock stopped and life was as it used to be…

Since Ernie’s admittance to the memory care facility, the nights here at home have felt cold and lonely. For 9 months,  I have climbed into my empty bed feeling an aching desire to have him next to me and, upon awakening, have felt the dull jab in my stomach from the reality that he is gone.

Last night, I chose to take Ernie to a Christmas gathering in our community — if for only an hour.  I knew that there would be familiar faces in festive moods with lots of holiday cheer.  Also,  there would be dancing — something Ernie always loved!  Knowing that his feet still moved with a good beat, I wanted to dance with my husband once more!  I pulled out his dress clothes, polished his good shoes and took them to Sunrise to get him handsomely dressed and ready to party!

At first, Ernie appeared confused as to where he was going but, once dressed in his finery, seemed ready to take on the night with “his lady!”  I purposely had Michael Jackson’s CD, This is It, playing in my car as we drove to our event and could not help but see his foot tapping and his hand slapping  his knee to the rhythmic song of Beat It.  Upon our entrance, familiar faces greeted Ernie and me with open, loving arms. Although Ernie could not remember names, he recognized the face and felt the energy of each person.   His enthusiasm and confidence grew with each welcome and he felt loved.

And then, the music began…

Paul, the neighbor D.J., looked at me with a twinkle in his eye when he saw Ernie take me to the dance floor. He surprised us both by playing our two favorite dance songs.   And dance we did.  Ernie’s rhythm took over as he confidently stepped out and swung me around the floor like he always had done.  Together, we danced, laughed, cried, and held each other as if we were the only ones on the floor.  For those moments, we were the Ernie and Margo of yesteryear.

We enjoyed a half dozen dances and were happy.  As we left the party, I thought, What would happen if I brought Ernie home for just one night with me?  I had been advised by the facility staff that this might not be the right move however, my heart spoke clearly that this is what I wanted to do.  I longed to bring him back where he once had been.  When asked if he would like to come home with me, he glanced over at me with a smile and said, You bet, Kiddo.

Ernie walked into our home happy but somewhat confused and I  wondered if I had made the right choice.   I lead him to the bed room, prepared the bed for any unforeseen accidents that might occur, helped him undress and climb into our bed. He seemed comfortable.  After turning out the lights in the other rooms, I returned to our bedroom with a flash back…there Ernie was on his side of bed, tucked in, with our little cat resting on his feet.  I  climbed in next to him and felt safe once more!   I closed my eyes and blessed the feeling of his presence next to me as it had been for 22 years. The warmth of his body, his arm so familiarly wrapped around my waist, his even breathing and his, Good Night Kiddo-squeeze sent us both off to sleep holding tightly to each other the entire night.

In the morning, reality came back. Ernie seemed happy but somewhat agitated and I helped him to get oriented, dressed him, and  took him “home” to where he now lived at Sunrise.  Sad as I felt, I would not have taken away the night together for anything.  If only for a moment in time, the clock seemed to stop, all worries dissolved, and I knew that this night would remain in my memory for the rest of my  life.  For this, I am truly thankful.

From “Giver” to “Partner”

8 Jul

I had a brief chat with a neighbor today about taking care of myself as a “caregiver.” She was concerned about my taking the time to take care of myself in this role.  As much as I appreciated her concern,  I corrected her and shared that I now refer to myself as a care-partner vs. a caregiver.

What does this mean?  For three years, I found myself struggling to take care of my husband, the household, financial, and our family needs.  I look back and realized that I actually did a pretty good job of it!  But, when I looked in the mirror at myself, I found a very tired, overwhelmed, consistently anxious person staring back.  I chose, however, not to take too long of a look at that reflection, and kept on “keeping on” because I felt I had to do so.

Then, early in 2012, a friend shared a statistic that woke me up:

Sixty-five percent (65%) of caregivers die before the person they care for does!  

As a woman who always took pride in multi-tasking and handling it “all,” I found this hard to accept.  Could I be included in this statistic?  I was still 20 years younger than my husband and had gone through some tough times before — this was, indeed, the toughest though,  But I am strong, in good health, and young!  I responded.  I can handle it!

That’s what you think, the friend continued to tell me,  I am not trying to hurt your feelings but I have been seeing a different “you” for a while now and you are extremely high-strung and walking on egg shells 24/7, she honestly said.

I certainly had not paid much attention to myself and thought I was handling everything as well as to be expected.  I took little notice to my feeling short-of breath, having less healthy eating habits, and lacking good night sleeps.  Life was always in a rush and taking care of matters that dealt with my husband and the many A.D. challenges was at the forefront.  I found I turned down things that I enjoyed, made lists and accomplished the many daily tasks only connected to his needs, the financial needs, and my family’s needs.
Exhausted, I found the most enjoyable part of my day sitting zombie-like in front of the television set when Ernie had gone to bed.

I realized that I had changed and, in the midst of this, lost the confidence, the creativity and positive energy for which I was known to have!  With this, my relationships were more strained — with my husband, my daughter and her husband, my students in class, and my friends!  My language became more negative and my spirituality seemed to wane.  This, indeed, wasn’t me!  And how would I get myself–as I used to be–back?

The answer was by changing my role as caregiver to care-partner!  I reached out and found help from the local Alzheimer’s Association and other senior services, found a local senior center for my husband, hired a wonderful man who was eager to make a little bit of money to take Ernie to and from the senior center, used Hospice Transitions’ team to make occasional visits and called on the friends who offered to help. I had so many partners helping me and helping my husband instead of trying to do it all myself.

I began to put my needs into the equation of the life I was having to live with a less-abled husband.  I took a little vacation with a good friend, signed up for a trainer at the gym, took daily walks, took time to meditate and do yoga, and met with my friends for an occasional “night out.”

Now, Ernie is in a senior facility and I know he is in good hands while I have more time to live my own life, as well.  All of this did not happen over night, it took time, faith, creativity, and thinking outside the negative “box” to move ahead.   Life around me has changed. My energy is back, I feel physically healthy,  my view on life is more positive and my relationship with family and friends –even Ernie — is less strained and more comfortable and accepting.

I can confidently say, Margo is back!  I still am molding the person I want and need to be at this point in my life and I’m actually having fun reinventing as I go.  I have a bucket list into which I have already started digging!  And although my sadness returns every now and then with the continued challenges of my husband’s disability, it is easier to get myself back.  I am now partnering with others in order to continue being a loving care-partner to my husband.

I am thankful for the good friend who was honest enough to point out what was happening to me and scare me enough to wake up to do something about it!

To those who identify with the caregiver role, do what you can to change the role of caregiver to care-partner.

The Title of “Mother”

13 May

Happy Mother’s Day to all the mothers reading this.  I cannot think of anything that has meant more to me than being a mother…

I awoke this morning feeling a little down.  With my mother gone for 8 years, my husband now in a facility, and my daughter thousands of miles away, it just seemed lonesome.  I am most grateful for having had a great relationship with my mom and having my husband and daughter, although not home, still a part of my life, however.  I am also grateful for my little cat who reached out and touched my chin this morning as if to say, Happy Mother’s Day!

I miss my mother, of course.  I think of her all of the time and wish I could pick up the phone and chat with her to feel her love and support — especially through these challenging Alzheimer years.  I have her picture in a special place today and have both my daughter and my husband’s picture displayed with it.

My daughter now has her own life with a wonderful husband.  I am so happy that they have each other but do miss having them closer in proximity.  Our communication is mostly through email, texts and occasional phone chats.  I treasure them, of course, but realize my role is not as prominent now that her life has an energy of its own.  I know, however, that a mother’s love goes on forever and being her mother — whether near or far — is still the greatest blessing I have in my life!

I also realize that, with Alzheimer’s, I have become a mother to my husband who now looks to me for everything — just like children do with their mothers. I know how much he depends on me.  He occasionally calls me “Mother” upon which I quickly correct him.   I don’t want to think of myself as his mother.  His mother only deserves that honor and, as his wife, it just doesn’t feel right!  I prefer, instead, the name he calls me when talking to others as, “his lady.” Whether he remembers my given name or not,  I am not his mother and take pride in being his lady.

So, on this Mother’s Day, I enjoy memories about my mother and the joyful moments of celebrating Mother’s Day with my daughter via telephone many miles away.   And as far as my husband with Alzheimer’s, I continue to see my role as a loving wife, care-partner, and his lady.