Goodbye Miss D

My neighbor, Miss D died last night. She had a stroke at home a few days earlier. Her home aide and nephew were with her. I am so grateful this did not happen to her when she was all alone two years ago living with dementia.

Life can really change in an instant. Mine changed the beginning of this year as my husband and I became caregivers for my 91 year-old mother-in-law also with dementia. We sublet our apartment and moved in with mom, to keep her in the home she knew, for as long as possible. This meant I would not see Miss D regularly as I did every week. Now the visits were only two days a month when we were back in the city on our days off when other family could care for mom. Miss D was our biggest supporter for the decision my husband and I made. She missed me not visiting and wished we could move mom into the city and live in our apartment. I told her when our allowed sublet is up in two years we will.

That’s so far away. You’ll forget about me.

Miss D is always with me. Her dementia was not as advanced as mom’s, but I learned to really care for people with dementia through my experience with Miss D – to have patience, go with the moment no matter where it leads, gain trust and show lots of love through touch.

I will never forget Miss D.

Facial Night with Miss D

Miss D has settled into a routine after her return home three months ago. I wish I could say she is really happy, but living with dementia doesn’t get better now that she’s home – in some ways, she’s more lonely. She’s confused with the different home care aides that come and go. Fortunately she does have 2 consistent aides who care for her these days. I really like one and the other one I don’t. As her neighbor who’s been so involved with her the past few years, it’s all about showing up and just being there for Miss D in ways she needs someone to be.

Neighbors get facial tips from Miss D.

 

A few other neighbors and I planned such a night for Miss D last week. We’re calling it our Friday Night Facials. All of us live in the same apartment building and have known Miss D for over 30 years – before and after her dementia took hold. We have some history, especially with the landlord.

Oh, yes, avocado and olive oil are great for your skin. But, if your skin is oily, don’t do it. Don’t put any around or under your eyes . . and don’t talk when the facial is on, it will stretch your face and create wrinkles.

We were in the presence of a master of the natural facial. All of us “girls” noticed how beautiful Miss D’s skin was as she aged. We wanted to know her secrets before she forgot them. It’s funny, you think a night like this is so special for Miss D, but it was for all neighbors and Miss D’s aide. . . the one I really like!

. . . we all needed a dose of beauty from Miss D, inside and out!

Last Dance for Miss D and Neighbor Nancy

The romantic music of Miss D’s past.

Miss D and I danced together in her living room the other weekend to Carlos Pizarro. Miss D was happy in that moment. She showed me how she placed her hand behind a man’s neck when she danced with him and said . . .

I only did this if I liked the man!

The music touched her, reminding her of her mother and of days gone by. After seventeen months of regular visits with Miss D, I knew her well enough to encourage those memories.

Last week, Miss D’s nephew moved into her apartment. He wants to help his Ma – she raised him from age two after his parents dropped him and his baby brother at Miss D’s apartment and never returned. The guardian group and the home care agency approved, knowing it will be best for Miss D if family is involved – especially during the sundowning episodes at night when Miss D has difficulty accepting the home care aide in her apartment. I agree, too. It is time for a responsible family member to step in and be there for Miss D. I am hopeful that the nephew will be that person.

My blogging days are coming to a close on Miss D as my timeline above nears completion. We have come full circle and she is back home with care and a guardian group who will handle her financial and personal needs along with overseeing that family will do the right thing by Miss D. I will periodically post updates to let my fellow bloggers know how Miss D is doing and report big changes when they happen as her dementia progresses.

I am now ready to step back into the role of friendly neighbor to Miss D with walks in the park, Friday night facials with our neighbors and . . .

. . . more dances to Carlos Pizarro.

Sleepless after Sundown

I’m beginning to question if Miss D will make it at home. She was diagnosed with Senile Dementia last year after Adult Protective Services found her unsafe to live alone and removed her from her home. I looked up this diagnose and found one description fit Miss D to a T.

senile dementia progressive mental deterioration associated with aging/old age; characterized by marked short-term memory loss, stubbornness, difficulty with novel experiences, self-centeredness and childish behavior

These symptoms have magnified with her return home. She is not adjusting well with the help in her home. In the middle of the night she roams her apartment unable to sleep, moves furniture and performs endless cycles of cleaning until she flicks on the light switch in the aide’s room and all #@!! breaks loose.

Who are you? What are you doing in my house. I want you out of my house now!

The aides have reported episodes of hitting by Miss D. She has already lost two caregivers not willing to come back. Only one aide will return and deal with Miss D’s dementia. I originally thought this aide was too feisty for Miss D, but perhaps she is the type of caretaker Miss D needs now. I’ve been called to come down late at night and calm Miss D. Clearly this pattern can not continue, everyone needs to sleep.

solutions adjust her medication and see if the aides can go on 12 hour shifts instead of three to four 24-hour days

If this doesn’t work . . . then what?

A Mark for Miss D

A year ago today was Miss D’s court hearing to decide if she was an incapacitated person and required a legal guardian. The judge ruled she was incapacitated and set in motion the process for her safe return home. Today also marks 2 weeks since Miss D returned home.

Why was I in the hospital and how long was I away? Who put me there?

Her short-term memory effected by dementia has wiped it out. Some people may think it’s good she has no memory of what happened to her, why tell her. Miss D is a very perceptive person and sharp. She knows her life is changing and wants to make sense of it. When she asks me, I tell her. Some of it she figures out on her own.

I think my son had something to do with it.

Creating Miss D’s memory book

I’m putting together a photo book with captions for Miss D. She responds better when we discuss it through pictures. She sees herself in good spirits with people around her she cared about and who cared about her. Now she will place a face to the people we talk about from her best friend, Miss T, the secured location social worker, nurses, aides, to her guardian case manager and her new aide going home. Along with photos of my visits, I plan on including photos from the nephew of Miss D’s birthday party with him, the granddaughter and her children.

Photos were taken by a wonderful photographer at the secured location of Miss D and me. I am so grateful to have them – I can see the love Miss D and I have for each other in those photos. I don’t share these photos on my blog for Miss D’s privacy – this is still an ongoing elder abuse case. I hope the case will be prosecuted one day for the son’s financial exploitation and neglect of his mother. For now, the case sits in the DA’s office waiting for evidence the legal guardian will soon have of the exploitation.

Is a picture worth a thousand words to a loved one with dementia?

Connecting with Family

Miss D’s nephew and granddaughter came separately for visits over the weekend. It’s wonderful to have good family members return into her life. It was the first time I let myself be truly happy. A huge weight of responsibility was lifting from me – I never knew how heavy it was until a phone conversation with the nephew.

City park crossing photograph by Nancy Oatts

I was driving off the highway and saw this woman crossing the street. She was smiling and she looked like Ma walking out of the park with another lady. It was Ma! I stopped and got out of the car. “Ma, it’s me!” It felt so good to see her enjoying herself outside.

I could hear in the nephew’s voice, he was moved by this experience. It made me emotional as I pictured Miss D’s face without the anxiety I saw every week for over a year when she asked me, “When are you taking me home.” I knew the nephew experienced this, too with Miss D and he stopped going to see her at her secured location. It felt strange to be connecting with the nephew who disappeared from Miss D’s life for over 10 years. I like him, though, his heart is in the right place.

The granddaughter is a harder read. Although, she was pleasant with me this past week and thanked me for cleaning Miss D’s apartment, there is an underlying tension of mistrust. It goes both ways. I’m feeling more like she’s saying to me, “You can go now.”

I know she may be carrying shame for what her father did to her grandmother. She left the care of Miss D in her father’s supervision and it was a mistake.

Do you ever think a family member is capable of elder abuse?

Our Dementia Community

This weekend I discovered how connected our dementia community is on WordPress and beyond. I was nominated for a Very Inspiring Blogger Award by two exceptional bloggers I follow about life with a loved one with Alzheimer’s and Dementia, Frangipani and Demented. What I especially love about our community, is how global we are. Frangipani is from Singapore and Demented Girl is a poet from the UK. Thank you for your nomination.

Elder Abuse is a really tough topic to talk about. Many people don’t know what it is or how it relates to their life. It can, especially when dealing with dementia – the most vulnerable victims of Elder Abuse. This is the reason I started my blog – to tell a true story of an elder abuse victim with the hope of a good outcome on the other side.

It happened this past week for my neighbor, Miss D. She came back home with 24-hour home care after Adult Protective Services called 911 and removed her 443 days earlier. Help from many professional groups in New York City from a politician to an elder abuse shelter and a legal guardian came through to protect her. I have been her personal advocate.

This is an award that we pay forward — honoring the bloggers whom we follow and who inspire us. Here are the rules:

Thank and link to the amazing person who nominated you.
List the rules and display the award.
Share seven facts about yourself.
Nominate 15 other amazing blogs and comment on their posts to let them know they have been nominated.
Proudly display the award logo on your blog and follow the blogger who nominated you.

 

7 facts about me

1) I come from a musical family and I married a jazz trombonist.

2) I have always been a visual storyteller. With this blog, I found my verbal voice.

3) I was a toy designer.

4) I spent a year and attacked my fear of life drawing.

5) I enjoy a good laugh. My husband and Miss D make me laugh.

6) My mother-in-law has dementia. Her disease helped me spot it in my neighbor, Miss D.

7) I have a boyfriend named Humphrey. He is a dachshund and beagle mix.

 

Blogs I nominate to receive the award

I depend on their advice, emotional stories, forward thinking and a good laugh when most needed! If you’re not on the list, it’s because I know many of you already got this award.

Ashish Magar – He is committed to helping fight Elder Abuse and working for Senior Citizen Rights in Nepal and Globally.

The Memories Project – Joy Johnston shares such good advice with the dementia community after she went through Alzheimer’s with her father.

Ann Ahnemouse – She comments on living with dementia with her partner, her dude, through amazing visual and verbal notes he leaves for her around the house. I love these notes!

The Lemon Bar Queen – Jodi is a nurse dealing with dementia in her professional life and with a mother with Alzheimer’s. Jodi posted the best recipe for rhubarb pie from her mother!

My Time is Now – This Los Angeles actress’s day job is dance therapy for people with dementia. She always has great music and an uplifting experience to share.

Lighting Fires – Sue Northrop is accomplishing a dementia friendly community in her native country of Scotland. Her mother has dementia.

As Our Parents Age – Marti Westin is a teacher for all ages. She is tech savvy and shares really interesting ideas on her other blog, Media! Tech! Parenting!

Confessions of an Aspiring Social Worker – Lina Marie is just starting her career as a social worker and working in the geriatric field.

Amy Lyles Wilson / Pilgrim Writers – I like the way Amy thinks. She’s a real writer’s writer and she’s on to something about “sharing our stories to save us”.

Dogwalker, Ph.D. – I just discovered this blog last week. I love anything with dogs helping people with dementia, especially T-Bone.

 

 

Transitioning Back Home

Miss D is calming down. She was more engaged with her aide this morning – she showered and dressed for a stroll in the park and a King Cone. The aide is finding positive ways to ease the difficult questions Miss D is asking. Yesterday Miss D’s nephew and granddaughter came for a visit. I will continue to hope the two will return into Miss D’s life and embrace this new ma and abuela. Miss D raised both, they are her family.

This afternoon Miss D was sitting on her little stool by the window looking down on the street. The aide told me last night she woke up and searched the apartment for Miss D. Alarmed, the aide called out for her. She heard Miss D’s voice, but couldn’t find her.

I’m talking to my plants and looking outside at the people.

There she was hidden behind her jungle of plants and sitting on that favorite stool. It’s funny, that was the last thing my husband fixed for Miss D’s return. He lovingly scraped, cleaned and painted that window sill knowing she would sit there everyday and look out.

Somehow I know Miss D’s going to be okay at home now.

Miss D’s Aides Room

I’d like to thank a fellow blogger, Joy Johnston from The Memories Project for welcoming Miss D home with a gift of the book, Chicken Soup for the Soul: Living with Alzheimer’s & Other Dementias. Joy has a written piece in this collection called “French Toast” about her father. Miss D loves humor and Joy’s story has a nice touch of humor in it.

The Distress Calls

I was told by my agency to call 911 and send Miss D back to the hospital if she doesn’t settle down. I told the aide, I’ll be right down. Please don’t call 911.

I was expecting Miss D to forget she returned home that day after spending the year away. For her, she’d never left her apartment and there was a strange woman in her home. I just didn’t expect to see her so angry.

Who are you? No one told me someone was going to live with me. Don’t get me wrong, she’s very nice, but someone should have told me.

I could hear in the aide’s voice, she did not have the patience for dementia like you hope an aide will have for a loved one. She was using the phrase, “I told you”  when Miss D asked her questions. It only got her more upset. With Miss D’s dementia, she’s not going to remember they’d already had that conversation. It was almost midnight and the aide wanted to go to bed. I took Miss D to her bedroom to calm her down and distract her from this situation, at least for the night. When Miss D was tired, she said I could go. I told Miss D I will let myself out, I have keys. Miss D preferred to walk me to the door and she locked the door behind me.

The next morning I get a call from Miss D’s guardian group, the aide is threatening to call 911 again because Miss D will not eat breakfast or take her pills. They asked me to go down, get some food and the pills in Miss D and smooth things over. After all we’ve done to prepare for Miss D’s return home, it seemed strange how calling 911 would be so quickly an answer for the aide instead of knowing how to handle a situation. I was concerned this was not the proper aide for Miss D. The aides at her secured location this past year, loved her dearly and they got along . . .

. . . but, Miss D was feeling more in charge at home.

Miss D is Home . . . For Now

Leaving the secured location was very emotional for Miss D. She was gracious to the staff, the parting of Miss D and her friend, Miss T made all of us cry. As Miss D waited with her new home aide for the transfer van, the guardian and I left in a separate car with her belongings. Anticipation built as the van turned the corner on our street. Fireworks exploded when Miss D stepped out of the van at her apartment entrance – she kissed the building. Too nervous to use her keys, she asked me to open the doors. She checked her mailbox, we entered the elevator and exited on her floor. A girlish joy overwhelmed Miss D when she saw the Welcome Home balloon hanging on her door knob. She inspected every room of her apartment with over 50 years of memories, happy to be back home.

There was a lot of activity with deliveries of home care supplies, the nurse setting up the meds, the guardian signing papers and the nephew came for a few hours. By late afternoon, it was just Miss D, her new aide and me sitting in her living room. Miss D was back in her apartment with no memory she was removed after a 911 call by Adult Protective Services over 15 months ago. I left happy and ready for Miss D and her live-in aide to get to know each other.

I returned in the evening with a few breakfast items to find Miss D had unplugged all TV electronics, the cable wasn’t working. She was rearranging everything – which was her pattern when she was home. I sat with Miss D so the aide could take her shower and returned home around 9PM.

Preparing for Miss D’s return home had taken over a month with my husband and me clearing a “junk room” for the aides room , deep cleaning and monitoring landlord repairs. I was exhausted and ready to have Miss D’s life move forward and mine become mine again.

The distress call came around 11PM – the honeymoon was over.

Miss D is Homeward Bound

It’s hard to believe, but Miss D will go home to her apartment in 2 weeks. The social worker, nurses and aides at her secured location can now tell her a date she will go home. It’s relieved a lot of anxiety for Miss D when she asks daily, “When are you sending me home?” Two weeks sounds like a long time for her. With her dementia, she does not remember she has been away from home for over 15 months or her son stole her money or she was neglected by her own family.

My husband and I and the guardian care manager are busy with details getting the apartment ready for Miss D’s return. We do expect the landlord to make repairs next week before the home care agency does it’s final inspection allowing Miss D to come home.

Miss D feeds a squirrel a cracker.

Miss D and I visited yesterday at her secured location. We’ve started having new conversations about her past – her touch with God at an early age and which of her sons has big feet. With each passing day I grow closer to Miss D and tell her we’re like family. She corrects me and says, “We are family.”

For most elderly people, they say there is no place like home. Miss D is extremely lucky to have this opportunity for 24-hour home care. I’m optimistic this will be a success story as Miss D falls into a routine moving forward with live-in home care aides.

It should be so for every elder abuse victim.

Miss D is Close to Going Home

I arrived for a visit with Miss D earlier this month and found her sick in bed with pneumonia and an IV in her arm. She has been so healthy and strong at her secured location. This also happened to be the day a nurse from a new home care agency was coming to meet her and make an assessment. I was concerned it would not go well again.

Miss D has a natural way of connecting with people. She is charming, respectful and always leaves you with a laugh – that is if she’s not focused on going home. She was engaging and delightful with the home care nurse.

The social worker from the secured location joined us in Miss D’s room and the nurse explained it’s possible they could start July 1^st! An in-home assessment with Miss D’s guardian and the home care agency was scheduled the following week. My husband and I joined them in Miss D’s apartment and we discussed what needed to be fixed and ready for Miss D to come home.

Miss D’s Apartment Keys

She will have 24-hour home care because of her dementia. It’s not easy to get. We tried for my mother-in-law who has Alzheimer’s recently and she did not qualify for 24-hour home care. I believe, spiritual forces are at work for Miss D, keeping her safe and giving her the quality of care she deserves and needs.

Everything was on target to get Miss D back home on July 1^st . . . until the landlord told Miss D’s guardian no repairs will be made until they are issued a check in full for back rent.

The guardian group of Miss D is still marshalling the assets with her bank. They do not yet have access to her money to pay the back rent in full, although they are very close. As I’ve discovered going through the guardianship process with Miss D, it takes enormous amounts of time. Miss D is extremely disappointed she now has to wait another month to come home, but she understands the reason . . .

. . . the landlord.

World Elder Abuse Awareness Day

Miss D has changed my life in so many ways. I remember volunteering for Free Arts NYC over ten years ago. I was creating art with at-risk children and thought I could make a difference in their lives, but a funny thing happens – they change your life. They give back much more to you. It’s a very satisfying experience. The same is true for Miss D. Not only does she give me truths to live by, she has opened up a calling for me to become an advocate for the elderly.

I have just completed a published graphic for the NYC Elder Abuse Center for World Elder Abuse Awareness Day recognized on June 15, 2014. With an idea of a butterfly isolated inside a jar, I found the perfect photo from Natalia Shaidenko. She so graciously donated her photo for the public awareness of elder abuse. The NYC Elder Abuse Center group embraced this visual with a powerful call to action message.

NYC Elder Abuse Center commemorates WEAAD

Miss D & World Elder Abuse Awareness Day

I was asked to say a few words today at Miss D’s secured location for World Elder Abuse Awareness Day.  The theme was being a Good Neighbor.

My experience with elder abuse started out simply by noticing my longtime neighbor Miss D in neglect. My husband and I have helped other neighbors before, but this was different. My gut told me something was wrong. How could a mother and grandmother with family living in this city be neglected and all alone?

I wasn’t quite sure what to do and I certainly did not feel comfortable contacting her family after what I saw. I started off by calling our local council office and they helped me navigate a referral to Adult Protective Services. With the city services getting involved, it was discovered Miss D was about to be evicted by our landlord and her son had been financially exploiting her for some time.

With this news, I became quite protective of my neighbor. She was vulnerable with dementia – she couldn’t remember she was abused and she didn’t understand what was happening to her. Miss D needed an advocate through this process. I followed her this past year as she was safely relocated to her secured location, testified at her court hearing and patiently waited for the appointment of the guardian group for Miss D. Many good professional people fought for Miss D’s rights. I am so grateful to them and especially to the secured location staff for keeping Miss D safe and for taking such good care of her.

As neighbors – we may be first-responders to Elder Abuse. I often think about what would have happened if I had looked the other way. Miss D would be homeless on the street and she’d be alone. Now, Miss D may be returning to her apartment this summer with the home care services she needs.

I will continue to be an advocate for Miss D. Our relationship began as neighbors, turned into a friendship and now we are family. I will also continue to fight for the prevention of elder abuse.

I would love to tell you all where Miss D is located, but I have to keep this private for her own safety. The secured location where Miss D has been for nearly a year is the best model I’ve ever seen for the caring of our elderly whether they are abused or not. Fortunately, this model of nursing home and elder abuse shelter is now being replicated across the country.

I was honored to receive The Good Neighbor Award today!

Day 399 / Miss D’s Home Care Dilemma

Finding the right home care agency will not be an easy task. I attended a meeting with a possible agency last week at Miss D’s secured location and it did not go well. In fact, I was angry.

The home care nurse concluded after her assessment of Miss D, that she should not be allowed to return to the community. She told us a family member had abused Miss D, she may wander outside the apartment and she has behavior issues. She has no responsible family member to live with her and take care of her. Agency aides are not a substitute for caring family members, something may happen and she did not want her agency liable.

Three of us sitting across the table from the agency nurse were totally invested and caring “non-family” members who want to see Miss D have a chance to go home; the guardian case manager, the secured location social worker and me, her neighbor.

As the home care nurse was speaking, I was thinking “Who is this woman talking about? Miss D is afraid of getting lost and sticks close to home. The behavior problems are minor like forgetting she ate and saying she is still hungry. I’ve never seen Miss D violent toward anyone. You can make her belly laugh in a minute.”

The home care nurse talked as if she knew what was best for Miss D and as far as she was concerned she didn’t want to have a missing person on her head for 19 days like a previous client she had. Well, I agree with her. Her agency is not the home care group I would want for Miss D.

Miss D was not at this meeting by request of the home care nurse. We wanted her there, it’s her right, but I know it would have been difficult for Miss D to listen and not be upset. I’ve become quite close with and respect the social worker at Miss D’s secured location. I know she wants Miss D to have the opportunity to go home as much as I do. I’m getting acquainted with Miss D’s new guardian case manager and she will work hard to find the right home care agency for Miss D.

After the meeting, the three of us picked up Miss D and took her down to the café for an ice cream cone. Miss D charmed her guardian case manager in their first face-to-face meeting that day. I know Miss D approved of her guardian angel when she hugged her good-bye twice, laughed and told her she was going to punch her in the nose next time.

That’s Miss D’s code for I really like you.

Dementia & Snickers

For those of you with a family member, friend or neighbor with dementia, I have an idea of continuity to share with you. It’s really simple, but it works.

About 6 months ago I was visiting my neighbor, Miss D at her secured location. I brought 2 Snickers bars and a roll of Life Savers – her favorite candy. She giggled with delight as I gave her one of the candy bars. I placed the other bar and candy roll under her pillow. I know Miss D hides her valuables under her pillow and she would find these gems after I left. A few weeks later I added a 3^rd Snickers bar to give to her best friend Miss T, a resident on the dementia floor. I always make a point to give Miss T her candy bar with Miss D. I follow the same pattern on every visit.

Connections were growing with $4 worth of goodies each week.  One day I shared with the man at the newsstand I was visiting Miss D as I bought the candy. He remembered her buying the newspaper from him every day until a year ago. Now he always asks how Miss D is doing and hopes she returns home soon. I in return tell Miss D the newsstand man says hello and she stays connected to her neighborhood. You may think your loved one with dementia doesn’t remember your visits or when you give them something – why bother. I believe they do remember with their hearts. Miss D hugs and kisses me each time I visit her before I give her the candy. Her friend, Miss T also hugs me and tells me in Spanish what a good friend I am to Miss D and I tell Miss T how much I appreciate her friendship with Miss D.

This goodwill happens by being consistent and showing up for our loved ones with dementia.

Being a weekly Snickers Fairy helps, too.

 

Day 359 / Time to Step Back?

It is coming up on a year when I found my neighbor, Miss D in neglect. I didn’t realize until now how I have become a numbers person recording and counting the days and visits – hence my timeline above for Miss D. It was my 50th visit with Miss D at her secured location yesterday and I was introduced to one of the social workers of her newly appointed guardian group.

Was it the first day of getting Miss D back home? Maybe. What if the guardian group can’t get 24-hour care in her home? What if it’s only 12 hours? Can Miss D be on her own overnight? This all has to be worked out and the guardian group can’t say with certainty how long this process may take. I’ve even thrown my name into the mix as a possible caretaker on a shift to ease Miss D’s transition back home. As a non-family member, my involvement has always been unclear. Do I step back now?

Ever since Miss D was taken out of her home by APS, I’ve felt responsible. My husband comforts me and says Miss D would have been homeless or dead from a fire or possibly put others at risk in our apartment building. Although, I know he is right, will this terrible feeling ever go away if Miss D does not get back home?

Does my counting bring me the control I don’t have?

About Elder Abuse

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Day 316 / Blue Skies

Good news for Miss D! The Order was signed by the judge! Miss D has a legal guardian group to move her life forward and hopefully back home. Her timeline above has changed color to a bright blue now that Miss D can see the light at the end of this long tunnel she’s been in for nearly 3.5 years.

Is Miss D homebound?

Day 305 / . . . and Counting

In the timeline above you will see the days and now years Miss D’s life has not been her own.

Section of Miss D’s Timeline

The timeline will add another long line of endless days for Miss D unless the judge signs the Order and Judgment to approve the guardian group. Only when that timeline changes color will Miss D have a chance to get back home.

Family has returned to visit Miss D in her secured location. The elephant in the room is called Dementia. Miss D’s nephew does not know this person he calls Ma and is experiencing the devastation of dementia to a loved one for the first time. I will admit my anger toward this family for not being there for Miss D after her dementia took hold has been fierce.

I do understand what dementia is having it in my family for the past eight years – embracing it and finding a new way of sharing a relationship with a loved one – the importance of being there and living in the moment with them, otherwise they will disappear into themselves and never come out.

My weekly visits with Miss D continue. She always asks about “our” husband if he’s not with me. I love it when Miss D laughs – it’s strong and bold like I know she can be and then our visit ends with . . .

When are you taking me home?

A Valentine Wish

Day 272 / Then and Now

Miss D is in limbo as the guardian group awaits a signed Order & Judgment from the judge. Until this happens, they have no authority to act on Miss D’s behalf. I am in limbo, too, no longer just her neighbor, but her protector. I can’t step back until I know her needs and wants are heard and met.

Photo Illustration by Nancy Oatts

A photo book full of family memories is with Miss D though her family is not. I was hoping the nephew she raised was stepping up, but he faded out this month as well. The granddaughter visited Miss D one day of the 191 days at her secured location. Miss D’s son was issued a restraining order, can not visit her and does not know where she is.  I’m sure he is hiding under a rock hoping he’ll get away with the financial exploitation and neglect of his mother.

The social worker created a memory corner in Miss D’s room with images from her neighborhood and community connecting her to the past. All of these good intentions are stripped away by Miss D’s dementia. Is the past so painful she hides the photo book and pulls down her memory corner or is her life becoming a blur the longer she is away from home?

Miss D and I talk a lot about her advocacy days. She lets me know what she wants to discuss and it usually winds up there. We are blending our lives together as I become an advocate for Elder Abuse. I want something good to come out of this experience for Miss D and for me. We’ve been talking about joining forces as a team for elder issues.

How delicious that would be!

Hidden Epidemic

Elder Abuse Awareness Animated Banner by Nancy Oatts Design © 2014

Under the Radar

This was the name of a study completed in 2011 by a team of research partners and many experts in New York State. They conducted telephone interviews of 4,000 people over the age of 60 and asked them if they had experienced elder abuse. The study revealed for every case that is self-reported, 25 go unreported. You can read the entire report here.

Imagine how many more victims of elder abuse there must be like Miss D, who have dementia, have no phone and couldn’t be considered for this random survey.

Dr. Mark Lachs, Co-Chief of the Division of Geriatric Care at Weill Cornell Medical College calls elder abuse an epidemic, speaks about the study, the NYC Elder Abuse Center and the need for more medical students going into geriatric medicine.

Speaking at the White House was truly an honor. It’s been a lonely field for 20 or 25 years.

What others are reporting across the globe on elder abuse.

Related articles

• Elder Abuse in Australia (voicefortheelderly.wordpress.com)

Day 254 / Is Home an Idea?

Miss D has not been home in almost 8 months. I assumed with the judge’s ruling Miss D would go home with 24 hour care, it never occurred to me she may not. I am struggling with this idea of home for Miss D. On one hand, it is her right to go home to the apartment she has lived in for over 50 years. On the other hand, she’s in a very good secured location and has made friendships with the staff and other residents.

As Miss D and I walked out of her room, an aide is having difficulty guiding a confused resident. Miss D puts a soft hand on the resident, turns her around and says, “It’s this way to the dining room, honey, follow her.” The aide tells me Miss D is so kind and helpful with the other residents.

Last week Miss D and I returned to her floor from her usual ice cream cone at the cafe. She starts crying and doesn’t want me to leave her alone. “I’m going to be all by myself.”

I escort Miss D down the hall to her friend Miss T’s room. Miss T is standing outside, tells Miss D not to cry and opens her door. At the far end of her room is a vacant bed perfectly made with Miss D’s green wool blanket. Miss T reminds Miss D she can come stay in her room anytime she wants, her bed is made.

Although, Miss D has not changed her request and each visit she asks, “When am I going home?” – what is home to an 83 year-old person with dementia? I asked Miss D what home means to her today.

Home is everything – family, friends and the meetings. Honey, you needed an appointment to see me I had so many meetings. It was delicious!

Illustration by Nancy Oatts

Miss D and I stroll the main floor after our talk. She is greeted by staff happy to see her out and about. Miss D introduces me as her friend and neighbor. What I took away from Miss D’s description today was more about involvement and connections than place. It can take a lifetime to form a community you belong to, but if anyone can do it faster it would be Miss D.

A social butterfly comes out of her cocoon.

Elder Justice

Will it take another 20 years?

Marie-Therese Connolly spoke before the Senate Special Committee on Aging at a hearing on Justice for All: Ending Elder Abuse, Neglect and Financial Exploitation on March 2, 2011, one year after the Elder Justice Act was passed into law. She spoke in direct terms of what is needed to move forward in preventing Elder Abuse. Below are a few excerpts from her testimony. You can read her entire testimony here.

Last year, prosecutors in Seattle charged Christopher Wise with the murder of his mother, Ruby. His crime? Letting her rot to death with eight huge pressure sores, several to the bone, while he played Internet poker and lived off her pension. His excuse? She didn’t want to go to a nursing home or a doctor; he was just respecting her wishes.

Ruby Wise was imprisoned in her bed by immobility, dementia, and isolation. She moaned and cried out for help continuously in the weeks before her death. Neighbors closed their windows and her son put in earplugs to muffle her cries. No one called Adult Protective Services or 911. It’s hard to believe the response would have been the same had the cries come from a child, a younger woman, or a dog.

We’ve spent countless billions to extend how long we live, but relatively little to assure dignity and well-being in the years we’ve gained. Like Chris Wise, we as a nation also have been wearing earplugs. It is time that we remove them.

Related articles

• Marie-Therese Connolly (defyageism.wordpress.com)
• 10 Minutes with Marie-Therese Connolly

Day 235 / Still Waiting

It’s now been 4 months since the court hearing. Miss D awaits approval of her guardian group from the judge and continues to live at the secured location. She has made a few friends and is being visited by the nephew she raised. The granddaughter made a visit with her children and I hope the relationship between Miss D and granddaughter will be repaired if she chooses to come back into Miss D’s life.

I continue to spend time with Miss D as her friend. Each visit she asks me, “When am I going home?” With her short-term memory loss it is a repeated question that fills our time together. I do not have the answer to that question. Whether she gets home or not, it is a persistent request of hers to go home and I hope the guardian group will make that possible for her.

It is her Right.

Day 115 / Court Hearing

Miss D’s court hearing was today. The hospital lawyer asked if I would testify to Miss D’s condition when I first got involved and what I knew about the son’s financial exploitation. I agreed to testify. Miss D was at the hearing. No family members were present when the proceedings started. The judge asked to deal with the landlord issue first. The landlord did not show and the judge moved to the next issue for guardianship.  The hospital chief social worker was the first witness called and I was asked to leave the courtroom. Miss D’s granddaughter showed up as my husband and I were sitting outside the courtroom. We said hello. I told her the hearing already started and she should go inside. I testified in front of my friend, Miss D. I knew she would not remember; it didn’t make it any easier.

The court evaluator was asked to give her report to the judge and court. She told how Miss D’s apartment was very spacious and clean with a spare room for an aide to stay in. She recommended Miss D needs a guardian for property and personal care, but she could go home with proper care. She explained Miss D did get a pension and social security and could afford to pay her rent and utilities.

Miss D’s lawyer spoke and set examples from our testimonies why Miss D didn’t need a guardian. He must do this on his client’s behalf, but everyone, even Miss D’s lawyer knew she needed a guardian. The judge, court evaluator, lawyers, hospital social worker and court staff treated Miss D with respect.

The judge spoke with her decision to declare Miss D an incapacitated person and ruled she needed a guardian for both property and personal care. She went through the entire testimony of why she came to this decision. The judge ruled the landlord was to wait for any payment and could not proceed with eviction on Miss D until the guardian was in place. The judge granted a restraining order for Miss D against her son and his wife. Miss D’s location is to be kept a secret and they are not allowed to have contact with her. The judge ordered the court to start proceedings on the son for his illegal financial actions toward Miss D. The judge believed it was best for Miss D to go home to her apartment with 24-hour care after guardianship was in place, hopefully within 90 days.

Miss D’s lawyer told the judge the name of the guardian group ( the group I wanted ) who will be asked to take on guardianship. The judge was favorable and knew who they were, everyone did.

My husband and I treated Miss D and her aide to lunch after the hearing near the courthouse. Miss D did not remember the hearing and continues to ask if I’ll be her guardian and take care of her, she’s not much trouble.

We told her it was all good news today.

Day 105 / Guardian Choices

There was a flutter of legal activity in the 2 weeks before Miss D’s court hearing. Miss D’s appointed lawyer asked me to be her personal care guardian. It was Miss D’s request. She did not want her granddaughter to be her guardian. I told the lawyer I had to discuss this with my husband.

The court evaluator came to our apartment for an interview and to see Miss D’s apartment. She did not feel comfortable recommending me as guardian for Miss D. She told me about a special guardian project, their goal is to keep people in their homes with the help of Medicaid.

I struggled with the idea of who would be Miss D’s guardian. I worried she would never get back home unless I did it, but realized my husband and I could not take on such a task. We knew the involvement necessary after stepping into caretaking roles for our own parents.

This evening I reached out to the guardian group the court evaluator had suggested through an email and received very good advice from the director. She told me there are guardian communities that take on cases like this. Their guardian group may be interested in my neighbor if they have a spot and they see the petition and court evaluator’s report. I sent the information to Miss D’s lawyer.

I had a good feeling about this guardian group for Miss D.

Day 95 / Staying Here for Now

A social worker called me to come and help Miss D get settled a few days after she arrived. She would not unpack her bags. That’s Miss D, feisty!

I saw Miss D sitting in the dining room at a table by herself and clearly not happy. When I came to her, she started crying and hugged me. We followed the social worker to Miss D’s room with her bed by the window. I began to unpack her bags while we talked and put her clothes away. She quizzed me why I was doing that. “How long will I be staying?” she asked. The social worker told me to just tell Miss D, “You are staying here for now.”

Miss D’s new place away from home gives her more freedom and is a less stressful environment than the hospital. She has no memory she was in the hospital for 2 months. Many of our early visits ended with her crying and accusing me of putting her there. It was a difficult period being the only person she knew visiting her from the outside.

I take her down to the main floor for a change of scenery. She feels she is in a park outdoors and loves eating ice cream cones and candy bars from the café. She thinks she is going back to her apartment after we are in the park and we need to decide what to have for dinner. She “wants to get down to business”, she wants me to mind her and be her guardian. Miss D tells me, “I take care of my bills, but if you did it for me, it would only be 2 bills and I don’t need much help”.

Our friendship is turning into love.

APS Responding to Elder Abuse

Did APS make the right call?

The longer Miss D was in the hospital, the more I questioned the decision of the Adult Protective Service caseworker to “dump” her at the hospital. Understanding APS caseworkers are overloaded, the financial cost of using the hospital as a stopgap was astronomical. More importantly, Miss D did not need medical care, and parking an 83-year-old woman in the hospital for 59 days is putting her in harms way. In fact, she did develop pneumonia which was treated, but had she been frail this could have been life threatening. Clearly a secured location other than the hospital would have been the better short-term solution.

What happened to APS on this case?

Once Miss D was in the hospital, the APS application for services was denied. She was ineligible and did not meet the criteria due to, “You have someone available who is willing and able to assist you responsibly. You are currently at hospital and an application for Guardianship has been applied on your behalf by the hospital Social Worker. This is necessary because at this time, you require a higher level of care.” So, Miss D has been put in the hospital by APS and APS denies her services requested BECAUSE she’s in the hospital – by definition a catch-22.

Did the APS caseworker file a police report on the son for financial abuse?

Day 80 / Waiting

Miss D has been in the hospital for almost 2 months. A Notice of Proceeding to Appoint a Guardian was filed by the hospital lawyer and a court date set for Miss D in a month. Every visit Miss D would tell me she wants to go home and didn’t understand why she was there, she wasn’t sick. My biggest fear was Miss D catching an infection in the hospital. She was moved to a more secluded wing because her son and his wife were disruptive in the hospital. The police were called one night and they were banned from visiting Miss D again. Hospital aides said they never saw the granddaughter visit, although she had called.

Miss D was stuck in her room with an aide and wore only a hospital gown everyday. The social workers, doctors, nurses and aides were very nice to Miss D, bringing her treats and doing what they could to keep her occupied. We filled our time together playing her favorite music on my laptop, Ella Fitzgerald, Louis Armstrong, Sarah Vaughan and Dinah Washington. I clipped her toenails and painted her nails, had reading glasses made for her so she could finally read during the day. She couldn’t remember what happened to her real glasses and I never found them. Miss D was still upset, but she was eating three meals a day and safe.

A week ago, Miss D came down with pneumonia. The hospital chief social worker called me today and told me Miss D will be leaving the hospital tomorrow until her court date next month. No one was to know where Miss D was going. The hospital was not telling her family. I could not see Miss D for 2 weeks. That was the policy. I was told only to be Miss D’s escort to the new place.

I went home and packed her bags.

Day 30 / Harassment

I did not answer my door, but the building manager in the basement did. She called me the next day and told me she spoke with the son and his wife. They wanted keys to Miss D’s apartment. The building manager informed them she never had keys and only helped Miss D when she had trouble with her keys, indicating it was many times. They asked if the granddaughter had been around and had keys. The building manager wanted to ask them where have they been, why are they here now. She’s never seen them in the building visiting Miss D in over the ten years she’s lived here.

My husband and I decided to make a police report at our precinct. I told the policewoman I was not threatened, she noted the report as aggravated harassment and gave me a complaint number. I’m not one for this kind of drama, but my husband and I were concerned enough to have something on record if there was trouble in the future. The calls and the visits stopped.

A meeting was scheduled again with the hospital chief social worker. I released the files I was holding of Miss D’s for the guardianship and legal process. The APS caseworker called me and told me she would be reporting the financial abuse on the son at the same police precinct we were the day before. The hospital lawyer called me and asked if I want to receive a copy of the Petition for Guardianship and I said yes.

I missed a call from the granddaughter, left a message she could call me anytime, I wasn’t going anywhere and would be visiting Miss D regularly. I never heard from her again.

I’m afraid to go into Miss D’s apartment alone now to water her plants.

Day 28 / Miss D Wants to Go Home

Miss D’s first week in the hospital was full of drama. I am not family and the hospital was not too interested in talking to me. They wanted the family involved. I assumed the granddaughter would be taking over and gave her documents she may need for Power of Attorney and a set of Miss D’s apartment keys.

I went to see Miss D the day the son surfaced. He called and threatened to take her out of the hospital. The social worker started asking me questions about the family. I told her I saw neglect from Miss D’s family and I only trusted the granddaughter. That evening the calls started from the son and his wife on my cell.

I was told the son was coming for a visit in the evening and will be escorted by security the entire time. My husband and I arrived at the hospital earlier to meet with the chief social worker at the hospital.  She was very reassuring and I relaxed knowing with her, the local council office, APS and possibly the granddaughter, Miss D’s care going forward may be what’s best for her. A meeting was scheduled with the 3 groups tomorrow at the hospital. The chief social worker said the goal is to get Miss D back home with help and the “right” guardianship. That, of course, was always what I wanted for Miss D.

Miss D was not good today. She wants to go home and is more paranoid of everyone keeping her there. She has an aide with her 24 hours a day to protect her, making sure she doesn’t walk out. It was difficult to see Miss D in such distress.

That night at 10PM there was a loud knock on my apartment door.

Banks Reporting Elder Abuse

Why didn’t Miss D’s bank do more when the forgery was discovered?

I’m only speculating, but it looks to me, the bank changed her account and sent her on her merry way. If you sit down with Miss D for a half hour or less, her dementia is exposed. They must have spent time with her to change her account and give her copies of the forgery papers.

Why did the bank only go back 3 months in documenting the forgery?

Clearly looking at her bank statements, the stealing went back more than 2 years by her son. Miss D was on her own for over 4 months after the bank documented the forgery until the landlord filed the Eviction Petition and I got involved. The bank could have been a First Responder and alerted Adult Protective Services.

Will Forensic Centers and Financial Abuse Specialists Teams (FASTs)  help banks catch financial exploitation at an early stage?

Day 21 / Burner Left On

A few days earlier, Miss D filled the top floors with smoke from burning eggs in her apartment. Her smoke detector didn’t work. My husband tried to turn off the gas without success fearing he may break a pipe. The granddaughter came in the evening after being called by a neighbor across the hall and told me she wants to make sure her grandmother will be okay.

I told Miss D the good news about her SCRIE application being accepted and her rent will go down. She was very pleased, said the landlord is going to “kill” her and laughed.

I got a call from the APS caseworker today. She was with Miss D in her apartment doing the assessment and asked if I would come down and sit with Miss D. I brought a muffin and orange for her. The caseworker asked her questions for almost an hour. Miss D did not do well answering the questions. The caseworker politely asked if Miss D would show her the apartment before she left. When the caseworker got to the kitchen and saw the top burner on, she told Miss D her burner was on and she should turn it off. She explained how dangerous it is to forget to turn it off.

The caseworker and I left Miss D’s apartment. She looked at me and said she could not leave this building without calling 911 and have Miss D taken to the hospital. I asked her if it had to be this extreme. She told me she could not sleep tonight if she left Miss D unattended in her apartment. I was shocked, she must know her job, she sees this all the time. She asked if I would go back to Miss D’s apartment and wait with her until she showed up with EMS. She said Miss D will be really upset and she should be mad at her not me. I went up to my apartment, made Miss D a sandwich knowing it may be hours until she ate and went back down to wait with her. She couldn’t remember the caseworker had just been there to visit with her.

Within the hour, there was a knock at Miss D’s door and two big EMS guys and the caseworker came in. The EMS guys started asking Miss D questions about who the president was and what year it was. Miss D was agitated and could not answer the questions. Miss D got pretty huffy and didn’t understand why she should leave her apartment with them. She finally agreed to go. I asked Miss D if she would like me to go with her and she said yes. She wanted to clean herself and get dressed. They gave her a moment to do it. I picked out some decent clothes for her to wear. I held her heavy purse and we all left the apartment for the ambulance waiting on the street.

The hospital did not want to take Miss D. The emergency staff was upset with APS and said they do not handle this type of thing. Miss D’s blood pressure was 200. A hospital social worker and the APS caseworker agreed they could not release her. The APS caseworker stayed for two hours and left. I called the granddaughter and stayed with Miss D until 11PM. She said they couldn’t keep her against her will, there was nothing wrong with her. I told her it would all be sorted out tomorrow and I would be back in the morning. I asked her if I could take her purse with me to keep safe in my apartment. She agreed and I left.

At home I documented the cash in Miss D’s purse. It was over $1,000.

Day 16 / Family Visits

I started checking in on Miss D three times a day bringing prepared foods and juice. My husband fixed Miss D’s bedroom lamp, got her television working and mopped the kitchen floor. It bothered Miss D to see her floor so dirty, not knowing how to clean it.

I put the juice in Miss D’s refrigerator and saw raw chicken in a roasting pan, a dozen eggs and butter. She must have gone to the store the night before. I took the raw chicken to my apartment and cooked it for her, leaving the eggs with hesitation. Miss D using the stove scared me.

The APS caseworker called me today and told me she had talked to the granddaughter. It did not sound positive the granddaughter would get involved. The relationship was complicated.

I found the cooked chicken in a trashcan in the living room. I began seeing a pattern of Miss D cleaning out her refrigerator each day, throwing out perfectly good food. If you gave her a dozen muffins, she’d eat them all in one day.

Early evening, the granddaughter and her young children visit Miss D.

Day 10 / Forgery Found

APS assigned a caseworker to Miss D. Issues around Miss D’s rent was surfacing, she was in rent arrears and she hadn’t filled out a SCREI form in 4 years to freeze her rent as a senior citizen. The council office was in daily contact with me to help resolve these issues and asked me to aid Miss D in finding the documents needed in her apartment.

I could see living alone with dementia was taking a toll on Miss D – papers were everywhere, in drawers and bags in strange places. I found the silverware missing from the kitchen hidden all over her bedroom. Days before she told me her children had stolen the items. My concern was growing. She didn’t understand what I was doing and I needed to keep reassuring her the council office asked me to find the documents to lower her rent.

I finally found Miss D’s mail key. She hadn’t opened her mailbox in over a month. Inside was the rent demand notice from the landlord and a utility turn-off notice. I called the utility company that night and they extended a cut-off date for a week. Miss D was carrying so much cash in her purse I asked her to give me $300 from her purse and I’d pay the bill up at the payment center.

I found the forgery documents from Miss D’s bank. She or the bank discovered the son was writing checks to himself from her account and her bank account was changed. The son was also writing her rent and utility checks and that ceased when the bank opened up a new account for Miss D. No bills had been paid this year.

The bank only looked back 3 months, the stealing started long before.

Day 7 / The First Step

I called the local council office and asked how to get help for Miss D in her home. After answering a few questions, the staff member determined Miss D was not in immediate danger and I was told to make a referral to Adult Protective Services. The council office gave me the website address and I wrote the referral that night.

Some questions I had to click “unknown”. I had no idea about her financial state. I assumed rent and utilities were paid. Although, our building manager told me that day she had tried to call Miss D’s son 3 times and he would not return her calls. She indicated she could not discuss why she was trying to reach Miss D’s son. I did fill out the referral section about neglect. I believed Miss D’s son was neglecting his mother and I had no idea if her granddaughter was in contact with her. I added the family phone numbers to the APS referral along with mine.

Now Miss D waits for help. I thought it was that simple.

Day 5 / Getting Help

Miss D’s mental state has deteriorated for over 5 years. Another neighbor and I were in contact with her family through the years to voice our concern. She has a son and a granddaughter. She also has a nephew she raised, but Miss D said she hadn’t seen him in a long time.

I spent a good amount of time with Miss D that first week.

I sat with her while she ate her take-out dinner in her apartment. She had lost weight in the past year. I looked into her shower and it looked dirty like she doesn’t use it. There is a cushion sponge on the floor of her tub. She told me she takes showers everyday, but she had worn the same clothes for days and they looked soiled. I asked her how she did laundry. She told me she takes it up to the Chinese laundry and they do it. She uses her cart, but the cart in the hallway was packed with 5 grocery bags full of empty soda cans. I asked her if someone comes to recycle for her. She was unclear what happens. I told her unless she needs the money, we can take the cans to the basement, the building will recycle them. She said that would be great, she didn’t know. I took the bags of cans to the basement and put them in the recycling bin.

It was time to get help for Miss D. I didn’t feel comfortable calling the family leaving it in their hands after what I saw.

I’ll call the local council office to get advice.

Day 1 / Getting Involved

Before I left I asked Miss D if we could take out the items in her purse and find the “bricks” at the bottom. She laughed. I could see she was carrying all of her financial items, cash, checks and change in a purse with a broken zipper. I found 3 heavy canvas bags of change in the bottom. I told her we should remove 2 of the bags and leave the smaller change purse. She hid the coin bags in a dresser drawer in her bedroom worried her family would come and take them. It was hard to go, Miss D was crying and didn’t want me to leave. Earlier she told me she wished she could end her life, she was so unhappy. Miss D is a religious person and I trusted that was not an option for her. I hugged her and made sure she locked her door behind me before I returned to my apartment upstairs.

That was the day I became Miss D’s memory.