Finding Purpose in life of LO with ALZ

Vickivicki

Hello everyone,

I was the primary caregiver of my precious mother who lived with Alzheimer's for 9 years after diagnosis. She and my m-i-l, who also lived with ALZ, died 24 days apart in July, 2019. While their deaths, both of strokes with lingering 10-12 days, were not a surprise, but the timing intensified our grief. We had prayed they would be spared the final stage of ALZ and they were. Both could still speak, feed themselves and walk. Both still knew us most of the time. We were thankful.  

During Mom's final months, an RA at her AL took a photo of her holding the hand of a fellow resident who had suffered a stroke, confined to a wheelchair and was unresponsive. Mom was talking sweetly to the lady and had been seen kissing her on the forehead. Those expressions of love and care were common throughout Mom's life. She showed affection and concern to her family, friends and strangers alike. Even though Mom's mind was demented and she was living in the latter stage of Alzheimer's she knew her fellow resident was infirm and she went out of her way to show her thoughtful attention. Wow! 

I cherish the photo as a glimpse of light of my mother's true self in the darkness of Alzheimer's. There were others throughout her nine years with the dreaded disease, but seeing Mom living with purpose by loving on another more disabled than she truly blessed me. Purpose. I'd love to hear from others here who have observed their LO living with Alzheimer's/dementia also living with some purpose. 

Please share your stories of a glimpse of light in the darkness of ALZ. 

God bless all the caregivers.

vickivicki

storycrafter

A beautiful story, Vicki. Thanks so much for sharing it. Your mom had her kind heart until the end; very comforting to know. What a compassionate RA to take a pic and give it to you.

My father had Alz and died a couple weeks after taking a bad fall last December. Despite the challenges of increasing dementia he retained his basic personality across a few years living alone in his independent living apartment in a retirement community. His heart and soul were always in evidence.

In his last year or two all he had left was the ability to hobble down the hall using his walker. He had a kind word for anyone he met and offered his compassionate listening ear the best he could. He was beloved by all the staff and old friends and neighbors and inspired us all with his fortitude and example of courage. On his deathbed he expressed gratitude and thanksgiving to all around him. It was a joy and honor just to be in his presence. You could feel his gratitude and peace.

During his last several years of life he often wondered aloud why he was still here and what his purpose was. He was convinced there was nothing further he had to offer. Even though he struggled with depression and awareness of a lot of his decline, he lifted others' hearts. 

He shared stories of his life with others that always contained bits of universal wisdom, experience, hope, and humor. Hearing them took a lot of patience his last year as his word retrieval slipped away. But the reward was worth it and the listener went away in wonder at his amazing life choices, twists and turns, and his integrity of spirit. He was still enriching others' lives.

Later on, despite bad times/days of grouchy crankiness and confusion, pain and disability, loss of speech, there were moments of warmth and light that came through his eyes. He conveyed concern, consideration, and appreciation to his caregivers. They felt blessed by him.

Thank you for raising this topic. Stories of meaning in the midst of difficulty are enriching rays of strength and peace for caregivers. I need to "keep my eye out" for more stories as I live with my husband with FTD, early onset, slow decline. Somehow it's harder for me to see the meaning closer to home. I hope others will share some stories. I believe it helps us all the find light in the darkness.

Space within

Hello Everyone,

  So many times a drop of anger would try to seep into my heart, grieving my mom while she lived with FTD-(PPA).  My inner dialogue would raise subjects on the quality of her life..at the end she was unable to walk, move herself, fed herself, communicate how she was feeling...ugh.   I brought up a question to the facility on what was the purpose of her being on 8 types of medications that were pretty much doing the same thing. Really ? Where was she behind all those side effects of the meds?  The answer was sometimes they work better altogether..  And she was in a "state of bliss" and it was us(her family) that were sad and uncomfortable.   So pretty much..they made mt my mom a druggie. Okay whatever.  I have faith when I brought my concern to their attention they may have later thought about it -the big picture. 

 Mostly I would catch myself before falling into the pit of ungratefulness.  There is always someone out there that has it better than you and also someone out there that has it worse...but yeah it s still what it is.  And we still must aknowledge the place we are in is worthy.  Shift the attention to what we can do. 

SO...toward the end I started to shift my perspectives and opened my mind to realizing all the people she was interacting with each day. The caregivers possibly were learning new ways to care for residents by caring for her.  My mom, lost her ability to communicate with us..but did sometimes sing..there was a time when she was singing verses of songs but unable to form a sentence during a conversation.  She also went through a stage of making a sing song tune of words...some of the careworkers would sing it back to her.  It was very sweet.  She would make this sing song expression mostly during what seemed to be times of happiness. Sometimes she could be heard down the hallway. I know this brought a laugh and smile to others.   Possibly she added a tool or an idea of how the MC caregivers could relate or communicate with other residents.   

My mom's illness made me reflect on how I communicate and interact and relate with others- in all my relationships. 

My family was very present in the MC facility. I imagaine sometimes we were annoying to the workers....but in my mind..we, to a degree, are here to hold each other accountable. Reminders that we are all human and desire the same core needs...love, connection.