10. Don’t assume because they can’t tell you, that your words or actions don’t hurt their feelings.

goldenruleThis is the tenth and last detailed item from my list of things to never say to a person diagnosed with dementia.

In some ways, this is a culmination of many of the key things to recognize when you are engaging with someone with dementia. While the person in front of you might be very different, seek to connect with the person you know. I understand that it’s easy to think they have no awareness of their surroundings, so why would they realize what was being said?

What is remarkable, and why dementia is devastating to those of us witnessing the changes in our loved ones, is that we see it steal away reasoning, executive functions, and interest in societal niceties. But if you are watching, you will see the individual need for meaning and purpose and the ability to connect with other humans remains.

When my dad passed away, and mom was in her assisted living community, she stopped going to lunch. She said she preferred the peanut butter and jelly sandwich in her room. When I would visit over lunch, I learned that most of the other residents didn’t want to sit with the “crazy lady” who couldn’t remember their name, ask them questions, or would just repeat the same story over and over. She didn’t want to go to lunch and sit alone. Who does?

There has been a good change to the way we view individuals with dementia. Kate Swaffer who posted the initial 20 “don’ts” has done a wonderful advocate for herself and everyone diagnosed with dementia. Behavioral research also demonstrates how changes to an environment and how you interact with them can benefit someone with dementia. Dismissing that the ability to recognize a terse remark or slight, is a mistake that could lead to agitated behaviors — just as it does for those of us without a dementia diagnosis.

The golden rule to “do unto others as you would have do unto you” applies to everyone. Recommended.

When More Translates to More Options for Failure

holeinnetI visit my mom in her community two to three times a week. There is usually one medical or care issue to follow-up on or navigate. We’ve been monitoring some minor issues with a focus on keeping mom as happy and comfortable as we can. I was planning on a social visit with mom today but arrive to find that her personal care assistant (PCA) is no where in sight. Mom is sitting in the living room staring at a soap opera on television when I arrive. She is dressed, but her hair hasn’t been combed yet and it’s 1 P.M. I brush her hair and take her into the community room to join in the afternoon activity. After joining in the games, I realize it’s 2:30 and I am concerned that I haven’t heard from her regular PCA and send her a text. She lets me know she’s home with a sick son, and apologizes for not texting me.

It’s not the job of the PCA to tell me mom doesn’t have an assistant today. I call the agency to understand why no one has communicated with me. Excuses are made, but I’m just mad. In addition to having mom in a community dedicated to memory care, we pay for the extra assistant to ensure mom is dressed in the manner she prefers, cared for, and happy. Now it just feels like I have more people to follow-up with to find out why no one seems to be on top of mom’s needs right now.

I follow-up with the community and learn that the agency called the head nurse, but none of the staff on my mom’s hallway knew. I’m not sure I’m okay with them parking her in front of a soap opera. I think they should have gotten mom to the activity room. I check my feelings and let the staff know that they should include mom in the activities.

While I love the concept of “many hands make light work,” today it feels like because so many are involved, no one seems to feel responsible.

Mom was fine. She’s safe, fed, and doesn’t complain. It’s my job to be her advocate and I wonder if this has happened before and I never knew about it. It makes me feel like I’m failing in my duties.

My hope was that more resources would help build a stronger safety net and today it feels like I have one with more places for failure. Disappointed. 

Finding the Right Villagers to Help Mom Age

hairfountainI am the local family caregiver, and have been for at least five years. I realize when I talk to someone new on this journey how long I’ve been in this role and how many ups-and-downs we have weathered. While my parents have never lived with me, there are a host of issues to face when your loved one is in a care community.

I recently reconnected with someone who worked in the Continuing Care Community that my parents selected in 1999. My parents never seemed to make the full transition citing the residents were just “too old.” As my mom’s dementia progressed and we were really struggling to know how to help, there was one woman who my mom gravitated toward. In turn, so did I. She was always positive and even checked in on my parents when they moved out of “her” section of the community. When she left for a new opportunity, I was bummed. She could always give me an “on the ground” report of my parents which no one else in the community provided.

Currently, I am working through my expectations and desires for mom in her “new” community (she moved her last January). It’s one of the top-rated in the area for the care of those with dementia, however, we have hired in extra help for mom. When she transitioned last January, she was in hospice care. She was too weak to stand, toilet, dress, or even sit up. We knew having someone with her would help her transition, ensure her needs were immediately attended to, and make mom more comfortable in her new community. She’s since graduated from hospice. However, we are paying fees for the personal care assistant (PCA) on top of the monthly community fee which total more than $13,000/month. I am working to whittle down the extra assistance so we ensure mom’s funds can cover her care for the coming years. However, I treasure the safety net of the PCA. I can get a personal report on mom as well as know that someone is attentive to all of her needs and my expectations for her care.

On the days when her personal care assistant (PCA) comes in after lunch, sometimes mom doesn’t look as good as I think she should. On a recent visit her hair was up in a fountain on top of her head and the rest of her hair was still matted from sleep. I brushed out her hair and wondered if we cut back further would I feel guilty on the days I didn’t stop by to comb her hair? I have watched the staff do many caring acts for the residents, but also know some days they can be overwhelmed by all the care needs.

I understand my guilt over these choices are first-world complaints to those of you who are, will or considering caring for your loved ones in your home. But having a loved one in a community also brings different emotions, choices, and challenges.

I’m working to accept that there are no perfect solutions. There is just the solution that works for you and your loved one for the time-being.

I work to connect with the staff at the community and ensure they know that mom would never wear her hair in a fountain on the top of her head, so let’s use a head band or hair comb instead if need be. It’s a never-ending task because the staff does change and quite frequently. I just keep reminding myself that for now, this is the right option for mom, even on the days it is not perfect. Practiced. 


When Dementia Steals Away “Home”

Kate Swaffer is living with a diagnosis of dementia and has eloquently taught me and given me a better understanding of what it’s like to be on the other side of this journey. I immediately connected with this post that speaks of the term “hiraeth” which means homesickness for a home in which you can never return.

On every visit with mom, I interact with 2 or 3 residents who are trying to get “home.” Some want to know if I can give them a ride, some want to know when family is picking them up, and some just want to know where home is. I also have frequent conversations with mom about going home, and it breaks my heart each time. I know for many moving into dementia, even home might not be “home” all the time. Shared.

Finding ways to stay engaged with mom is getting harder

drawingI think my mom’s favorite activity now is napping. She has really slowed down over the past few weeks. In hopes of having a visit that didn’t involve me watching her nap, I brought activities with me.

So far I have tried:

  1. Adult Coloring Books. My mother-in-law introduced one to our family when she gave one to my daughter as an activity on our flight to the church mission trip in June. Now I see them everywhere.
  2. Manicure. On my last trip we sat outside and I removed the remnants of the red nail polish she got in early July. As soon as I was done and she inspected my work, she took a nap.
  3. Pictures. While I always have a few pictures from the week on my phone, my mom has a hard time understanding what I’m showing her so I usually pull out her scrapbook and retell stories from our past.

I follow my mom’s lead and try to ensure she is comfortable and happy. It’s all I can do as I struggle with the fact that she continues to live in a state that she asked me to never let her fall into. Many of us fight the angst that we are failing to fulfill our loved ones wishes, while watching them slip deeper and deeper into dementia.

When it’s my turn, I sure hope we have more options on how to manage the lingering end of life when we are no longer leading the life we imagined. Prayed. 

A Different Degree of Elder Abuse

checkbookA few years ago, when we didn’t yet have a diagnosis, but knew something was wrong with mom and dad, we were concerned that our parents would be victims of elder-abuse scams. We had a major incident when my mom hired two contractors for the same work, one of which charged 5 times a reasonable rate for the work that needed to be done. Thankfully, we were able to get the contract cancelled in time.

While we wanted our parents to hand over the checkbook and let us help them, my parents refused and were a little angry that we even suggested such a notion. I now understand that keeping control and having a sense of meaning and purpose is not just important to recognize, but a monstrous roadblock for many to overcome.

As my parent’s were losing control of the world around them, the one thing they could do was pay bills and send off donations to the growing number of charities asking for money through the mail. I started to notice that my parents were making a LOT of donations to new charities. For years, they had always done the donations once a year, after doing checks to validate the varied non-profit organizations and their finances. Now, I was watching weekly mailings to new charities I had never heard of.

It seemed that the charities that got money, freely shared the names of donors with others. The mail seemed to grow with more requests for donations. Most of the mailings showed up and looked like bills, or had language on them to the effect of “Here is confirmation of your pledge.”

When I asked my parents, they couldn’t even tell me what most of the charities did. When I asked why they were changing their annual donations to monthly, they brushed off my question.

I still feel like many of these charities took advantage of my parents. They seemed to count on the fact that my parents wouldn’t remember they didn’t “pledge” funds and in a way, coerced them into donating.

I fought with my godly self because many of the charities were indeed well run and regarded and doing good work. But my logical, righteous self grew angry over the ploys and tactics they were using on my parents.

Eventually, the checkbook did get turned over. As I was cleaning up some old files, I came across an old register and more than half of all the checks were to charities. While I still carry a bit of rage over the tactics, now that mom is unable to manage to even sign her name, maybe a few hundred dollars every year to these charities was worth the sense of independence it gave my mom when she could still write a check. Conflicted. 

Dementia is a family affair

KayandCarlyMy daughter and I were recently interviewed for a show called We Choose Respect. We shared our story about how to watch, care, and manage through life when you have a loved one, in our case, my parents, with dementia. This is the second interview I have had in the past month in which sharing this journey with my kids seems out of the norm. I didn’t really recognize it, but I know I made this decision purposefully with my husband.

Many parents choose to shield their children from adult topics and issues. In this case, I just don’t know how I would have managed. We spent a lot of time with my parents and my kids witnessed some bizarre things. They also lived through mom running out of the house to help my parents late at night, supported me through visits when things were really wacky and my parents were fighting to maintain their lifestyle, and they have overheard discussions with my husband and siblings about what is going on with “nana” and “pop-pop.”

I believe that having my children understand this journey, helps them understand how to be a loving, respectful, adult child, even when the roles start to reverse. I sure hope my kids won’t have to help us. However, knowing that 7 out of 10 adults that turn 65 will need 3 or more years of long-term care means that the odds are not in our favor. As a country, and a culture, we really don’t know how to address the fact that most of our parents didn’t want to linger, but the reality is that we really don’t have any choice but to keep them safe and comfortable.

I’m humbled by my daughter’s ability to absorb and incorporate what we have all learned on the journey to deliver loving care with grace and humor. As she so eloquently stated, “If someone you love forgets you, well, you remember them, and you can love them as long as you cherish those memories” Cherished. 

To hear this interview, you can find it on itunes, or listen from your computer at http://www.wechooserespect.com/

Are Ensure Shakes and Hospice Compatible?

ensureMom has been moved into hospice care. We’ve not been told her death is near, but there is little hope her condition will improve. When it was suggested, The idea was to have a doctor who would focus on keeping her comfortable. She’s been more communicative than she was two weeks ago, but those moments are sporadic and unpredictable.

I realize what a gift my Mom gave us when she told my brother and I that if she were in a poor health situation, with little hope of improvement, we should “push grannies chest on her.” Since we don’t have a legal or moral option to help fulfill our Mom’s wishes, we are being very vigilant about how to best navigate this final phase of my Mom’s life.

I’m currently fixated on the figures released by Health & Human Services that share 7 out of 10 Americans over the age of 65 will need some form of long-term care services. Women on average need it longer (3.7 years) than men (2.2 years). Most of us hope we will die in our sleep or at least swiftly. That just isn’t the reality of our current world. A colleague that focuses on helping individuals put together their health care wishes M. Jane Markley reminded me of a tool that individuals can use to start thinking about and discussing what they might want to happen in their final years. It’s called the The Conversation Project. It was very easy for me to complete my copy. If you are caring for a loved one, how valuable would this have been to help guide you through the tough decisions you must face/faced?

I know that I have been aiding or managing matters for my parents for nearly 5 years. I was fortunate my parents talked about end-of-life issues before they were needed. It wasn’t dark or gloomy, it was just something that came up as dear family friends became ill or passed away. I was fortunate that I spent a lot of time with my parents as an adult so I knew them. Knowing what they believed didn’t make the decision on how we supported our Dad and managed his cancer any easier, but looking back, I’m confident we did the right thing for him.

Yesterday I was asked to pick up some Ensure for my Mom. I immediately confirmed that I would, but I started to feel a fracture in my belief that I was fulfilling Mom’s wishes. We have the DNR in place and is giving her nutritional supplements the beginning of the slippery slope?

When my brother was visiting he said he witnessed those caring for her working very hard to get her to eat. We spent an entire evening talking through this and felt that our Mom wouldn’t want to be coached so vigorously into eating. For several years she has bristled at any who commented on her food choices or lack of appetite. We want to follow her lead, but also recognize she has dementia and don’t intend to have her starve. It could just be that she’s having trouble swallowing the pureed food.

I reach out to both the Assisted Living Community and my hospice care case worker. “Help!”  The head care manager calls me to share that as long as my Mom’s eating half of her breakfast, which she’s doing, they don’t see the need to provide supplements unless she is saying she is hungry. The hospice care manager shares that many of the individuals in their care use these supplements. If drinking them provide enjoyment, don’t hesitate to offer it. The best reason she gave was that the nutrition provided would help her skin which is now started to get red and threatens to tear. The reality is that when she’s ready, she will just stop eating and drinking. I realize the shakes might be a better option than the pureed food and dropped off a variety of flavors.

This is just another complicated issue we are facing as we want to make sure our Mom is comfortable, but not do anything that might unknowingly extend the poor quality life she is now living. Considered. 

The Merry-Go-Round of Caregivers

merrygoroundAs soon as my Mom became bedridden, we brought in extra Personal Daily Assistants (PDAs). In the course of two weeks, we have had more than half of the caregivers assigned removed from the case due to other issues having nothing to do with my Mom’s care. It’s frustrating. I have called the agency several times to express my concern with all these new faces to a woman who has dementia.

Not only is my Mom trying to cope with fact that she can’t get out of bed and walk around the community, but we have additional new faces coming in from hospice. This is a lot of change for even me to handle. My Mom does not manage change well and each caregiver has a bit of a learning curve in working to find the right way to work with my Mom.

Thankfully, my brother came to town this past weekend. He’s a Human Resources executive, so I consider the timing a blessing. I ask him to meet with the caregivers and determine which ones we should keep. I also call in a new agency. We initially used the one care agency recommended by my Mom’s community. Since I was concerned about all this change, I called in a new agency to fill in for the weekend care. Before I can call to cancel this coming weekend with the old agency, they call to tell me the caregiver from last weekend can’t return. Really … what part of “no more change” got lost between my mouth and your ears?

This is hard enough and now we are faced with finding the right agency/caregivers to best help my Mom. I’m glad I opted for Plan B. It’s difficult to realize that even the best-intention-ed individuals and agencies fall short of what our loved ones deserve. Frustrated.   

No one cares about me

threeringcircusMy caregiving journey has moved from tasks I can manage by myself to a three-ring circus. Under the three tents we have:

  • The Assisted Living Community: The center ring that has the overarching task of care, but also has the least amount of bandwidth with very busy employees who care for many residents with a wide variety of needs.
  • Hospice: The second ring that is our resource to help my Mom be comfortable as she moves through the final stages of her dementia.
  • Personal Daily Assistants (PDA): Now that my Mom is unable to leave her bed, we have hired additional personal assistants who can be with Mom from 8 a.m. to 8 p.m. to keep her company, comfortable and cared for.

As we move through this change, we are hitting a few bumps in the road. Today an adjustable hospital bed arrives  and I start getting calls from all three parties. I was told I would be called when it was scheduled, but was not contacted. In the course of one hour, I speak with all three and we put a plan in place to manage the simple task of removing one bed and inserting the new one until I can drive over.

When I arrive my mom is half asleep. The morning PDA tells me Mom has been up most of the morning with all the bed-moving activity. I sit by her bedside and wait for her to stir.

I made a pledge when this journey started that I would always tell my parents what was going on at least once. I wanted to not just repay them with respect, but treat them as I would want to be treated.

When my Mom wakes I ask her how she’s doing. She starts to ask questions. It’s hard for her to speak now; her voice has changed and she has trouble forming words. She asks where her bed went and what happened to require this new bed.

I tell her that her back hurt so much she didn’t want to get out of bed two weeks ago. All tests came back negative and they tell me it’s osteoporosis. I let her know they ordered this bed in hopes of getting her comfortable. We spend the next hour cycling through her asking to get up but being unable to stand any movement. As soon as we get ready to help her move she yells “Wait a minute, wait a minute.”  We never have the chance to really help her move out of the bed, she seems to be afraid that moving will hurt too much. The PDA is with me and we try to arrange the bed to get her more comfortable. She is frustrated at this new development and just wants to do things for herself. She keeps asking how she ended up this way.

In the midst of all this, she states “No one cares about me.” My brain stalls as I imagine how lonely and frightened she must be even now when I’m sitting next to her. She doesn’t always know I’m her daughter, she doesn’t remember that her other daughter just visited and spent three days with her, she doesn’t know that her two sons immediately made plans to visit when I told them that hospice was recommended. My first instinct is to put my hand on her hand and I lean down to give her a kiss on the head and tell her I love her and that all of us care about her. I immediately walk out of the room before the tear falls from my face. Juggled. 


Dementia Caregiving: The things you can’t “unsee”

glovesEarlier in the year, I was interviewed on Huffington Post for a story on “Parents Caring for Parents with Dementia.” One of the other guests, Kathy Ritchie However, I’m starting to dance around the circle of the fire.

I’ve been visiting my Mom and working to use all the resources available to keep Mom “kempt.”  I had been doing Mom’s laundry — she would not allow anyone else to take it. She could do the laundry if reminded and done in parallel, but we rarely found the machine free so I would bring home the clothes and sheets and wash them. When my brother was here he added in laundry service hoping that will help keep clean sheets on my Mom’s bed and clean clothes on her back.  These are things that Assisted Living communities offer as services, but the resident has to be willing to allow help. Even though we have asked for the assistance, at some point the staff just gives up. As my Mom’s disease progresses along with the mood medication — she’s been allowing others to help in small ways.  I was thinking it was working, but realized the personal aide we hired in the evenings has been doing most of the laundry loads.

I will try to guide my Mom’s through showers and I schedule Mom’s hair appointments. The hair dresser my Mom has seen for years will go get my Mom and bring her to the beauty shop. Some days however, my Mom just refuses to go and I only know this because I show up and her hair has not been done. Most of the things in place are beyond the support for “activities of daily living” the Assisted Living community supports. It’s reminding me that our decision to move Mom to a community dedicated to memory care is the right choice.

When I arrive today, my Mom doesn’t have on any socks. When we go to her apartment, I find clothes and sheets in little piles on the bedroom floor. The sheets have been there for over a week. I made the choice to leave the sheets in a pile to see what would happen if I didn’t collect and wash them. I found out nothing would happen. Congrats, right?

My Mom and I collect all her clothes and go to the laundry room in hopes that the washer is working today and not in use. Luckily, it’s free. I start to pull out the items I found and realize that a few of her pants are soiled to the level of being disposed of … but she insists I wash them.

My heart breaks. My Mom has been hiding these dirty clothes. She knows something is wrong and was very anxious when I started to look at the clothes. She asks me to just wash them. I ask her to check the apartment one last time so I could clean out the clothes before putting them in the wash on the sanitize setting.

My guilt on the decision to move Mom is diminishing day by day. On the surface, it seems she is being cared for, but the dirty, difficult work comes down to me to manage. I’m thankful my Mom has the means to afford the community. However, there are still large gaps in the care we all expect. I move through waves of resentment and relief that my Mom is in this community. I want to be a loving daughter, but when faced with the dirty work of the caregiving job, I grow angry. Not with my Mom, but the reality that most of the communities are not fulfilling the pledge they made to their residents. I wonder what happens to all those individuals without a trusted and caring loved one to continue to advocate and support them. Saddened.