Three years ago our family was faced with a difficult decision. What is the best care for our mother? We toured all the possible local options, but when it came down to it, there was only one facility* willing to take my mother due to the advanced state of her Alzheimer’s disease. It would not have been my first choice. In fact, it would not have been my second or third choice. I found it to be a completely dreary and depressing place. Picture a Nursing Home from the 50s, not a modern day Elder Care Center.
Over the years I visited my mother infrequently. She no longer recognized me, but labored to link my face with a name or a relationship, straining to pull the memory out into the light – tortured by the shadow of a memory. Each time I went I spent as much time with her as I could tolerate, then raced to the front door, usually in tears torn with guilt over not doing a better job as a daughter.
Last week I had the deeply sad honor of spending my mother’s final days with her. For most of that time she was unresponsive. She no longer tried to place my face or remember my name. She was clearly ready to die and I did not want her to die alone. The problem was that in order to be with her I had to spend time in the place that had not been my first choice (or second or third).
During that week an amazing thing happened. Shift after shift, I met staff from every level – Nurses, CNAs, Social Workers, and Activities, Housekeeping, and Kitchen Staff – who knew and loved my mother the last three years. I was able to watch them as they cared for her, but not just her, I observed their tender care of other residents – all with advanced Alzheimer’s.
By the time the week was over the dreary surroundings melted away as person after person came in to say good bye and tell us stories of our mother’s last three years. One CNA told me about playing my mother’s favorite music for her in the middle of the night. Another told me about how she’d been able to make my mother smile by telling her that my long-deceased father was away at church. Others reported my mother’s insistent “thank you, thank you, thank you” had brightened their days.
From my time there I realized, it’s not about the décor or the style of the facility; it’s about the people doing the caring. I’m grateful that my mother did not die alone, but now I know, she did not live her final years alone, either, and in the end that is far more important.
——————
*Una Doyel Leonard was cared for at Alzheimer’s Living Center at Elim in Fresno, California.
What a tender authentic post. Thank you for sharing such a personal journey with us. My thoughts and prayers are with you and your family.
Thank you Sherry.
Dear Cheryl, my heart goes out to you, Dr Greene and your entire family during this difficult time.
I am not surprised you are able to see the positive in this – you and Alan are two of the most generous, committed and inspirational people Shari and I know.
Love,
Joe (& Shari)
I am deeply touched.
Hi Cheryl. We met at the San Miguel writers conference last year. I was touched by your post. My mom died a month ago after suffering with Alzheimer’s for a number of years. You are so right: many of the people who care for our fragile elderly are truly angels. There’s no way to express how grateful we are to them. Condolences to you and to Bob. Kathy M.
Kathy, I’m sorry for your loss — both the immediate and the years of loss leading up to the final one.
Cheryl, thank you so much for sharing this with us. It hits home in a personal way for me. Sending you & your family love & light.
Thank you Susannah. Love and light embraced!
Cheryl,
My mom was diagnosed with Alzheimer’s 2 years ago. It is devastating watching my mother’s tremendous vocabulary slip away. My relationship with mom has been unusual, in that, I was diagnosed with diabetes when I five and she was the calm in my storm for many years. We have now switched roles. http://www.healthcentral.com/diabetes/c/9993/108249/40th-anniversary
In all of this, I am blessed that she thought about the possibility of something sinister in old age that her children would struggle to handle and found a place that she could embrace as her home for the rest of her life. They have been a lifeline and support to all of us and I can’t thank Kendal enough for their well thought out environment for seniors.
I dread the day she cannot remember me, but as we travel down this road I am assured that she is loved and cared for in the way that all of us hope for.
In deepest sympathy.
Ann, Alzheimer’s is such a tragedy. Needless loss. I am so sorry. It sounds like your mother was an impressive woman. Our mother also made many decisions about her end of life care. Unfortunately the facility she selected did not accept Alzheimer’s patients, so we weren’t able to honor her request. I think that was one of the difficult things for me and one of the reasons being at Elim touched me so deeply. I’m glad your mother is able to find the care she needs at Kendal. Can you share the city it’s located in? There may be others reading this post who are looking for a loving environment for someone with Alzheimer’s.
Thank you for sharing your story. I too have a mom who facing the same battle and her two sisters. Soo sad. I feel bad for her staying in the facility but we had no choice due to her 24 hour care. I call her since I recently moved away and really feel guilty from time to time. But I have spent time with the staff and can tell they do love her and really care for her. I pray for her and my aunts daily and tell them that I love them. It’s a sad situation.
Bridge, It is a long and difficult battle. Be kind to yourself. That is what your mother would want.
Hi Cheryl
Thank you so much for sharing your story and your mother’s story. It needed to be told. A.L.F and hospice workers are a special breed of people. They can bring dignity to those who need it the most – our loved ones. And yes, are 100% correct that it is ALL about the people and not the material things or physical structures.
Love,
Shane and Chantal
Shane — My respect for A.L.F. and hospice workers couldn’t be higher. I am blown away. And they get so little in return. They are my heroes.
Cheryl – Having lost my mother 14 years ago and spending the last week of her life in the hospital with her, I totally understand where you are coming from. I too, was honored to have spent that last bit of time with her, and while she died from cancer, she did not know me over the last day of her life, probably because of the narcotic pain medication they had her on.
I am extremely sorry that you have lost your mother and to such a horrible ailment, but at least you do have those last few days and the stories of everyone in the facility to hang onto. It makes a great difference in knowing that you did all you could.
God be with you now and in the future. Take care of yourself and your family.
Regards,
Lilliane
Lilliane — When a parent dies, it changes us. Even if your loss was 14 years ago, I can hear in your voice, that you are still impacted. What lessons did you learn from your journey with your mom’s cancer?
Thank you for your kind words.
Cheryl
I’m very happy to read this. This is the type of details that needs to be given and not the accidental misinformation that is at the other blogs. Appreciate your sharing this best doc.