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

SSA vs My Durable Power of Attorney

ssaTwo month’s ago, I shared how easy my appointment and the process was to become the “representative payee” with the Social Security Administration (SSA) for my parent’s using my durable power of attorney.

I was told I would get all the details mailed to me within 4 weeks. At 6 weeks, I started to call and cursed my belief that SSA would live up to the promise of services. The window for phone inquiries is relatively small (M, T, TH & F from 9 a.m. to 3 p.m., W 9 a.m. to 12 p.m.). On my first call during the “open” hours, the call volume was so heavy, I took the option to request a return call. A half of an hour later a woman calls from their central phone bank who is unable to help me. I am told I need to back during office hours to reach the local office. I explained that I called the number I was given during office hours. I’m told that I need to try again and know that when call volume is heavy, all calls are redirected to the central number , who in my case are unable to help me.

I tried calling more than eight times over a two-week period and was always bumped to the central phone bank. After ten weeks, my first confirmation that the process worked was my mom giving me a letter that she got from Social Security. She hands it over and asks me what it means. I tell her and she responds “Okay, Babe!” It took a lot longer than I had expected, but at least it’s finally done. Now … if only I would get the notice and details on how to login so I can update the address to make sure this year I get the tax forms. Completed. 


Related Posts:

Where Government Services Crush US Financial Services

The Promise of Services at Social Security (SSA)

Tears of Frustration vs Tears of Grief

so many candlesLast year at this time, my brothers were in town to take my parent’s car keys.  My parents doctor wrote to the DMV regarding their cognitive issues and their licenses were revoked. My parents continued to drive. They really didn’t remember that their licenses were revoked.

I saw my parents say and do so many things that were outside the realm of normal behavior, that I would sometimes end up in tears — however, these were tears of frustration. I was at a loss about how to help my parent’s who were obviously failing, but did not recognize it.

Yesterday was my birthday. For the first time, my parent’s did not mention it. My mom no longer manages the calendar which was her guidebook for the past year. I have been telling myself that my parents are gone — however visiting with them now is pleasant compared to just six months ago. We still have a connection and familiarity and often spend our time chatting about the puzzle they are working on or what we need to go buy at the grocery store. Now they will ask for and easily accept my help.

The fact that they don’t know it’s my birthday reminds me how much of my parent’s I’ve already lost. Dementia is a cruel disease that afflicts us all. Aged.

Finding our Roles as Siblings and Care Givers

thankfulAll four children (and one brave spouse) came to town to help go through the final household items – these were mostly personal or historical documents … the items we just don’t know how to handle. We figured if we did it together, it would be easier to feel confident in our decisions.

What I recognize in looking back on some difficult conversations is that we are all skilled differently and have varied roles to play as we care for our parents.

My role has developed as the primary care manager for my parents. I took the crazy calls, battled with them and witnessed their worst over the past year. The role has changed me. I believe it’s  made me kinder and gentler. However, I realized that I expected my siblings to fill in as I do as a care giver.  That is unfair – I’ve been in training for this role for years and am still learning on the job.

My parents are no longer the people who raised us. We see glimmers of our parents, but they are now both incapable of interacting with us as our parents used too. As they changed, so must we.

We are still finding the balance, but just as I changed to adapt to my parents, I know I need to adapt to understand the changing role of me and my siblings. I know how lucky I am they are all engaged and willing to help. Thankful. 

When Did we Pick Out This Place?

butterflyinflightI’ve become a little obsessed with trying to figure out what and why things stick in my Mom’s brain. My Dad has Alzheimer’s and my Mom has Vascular Dementia. My parents have changed in different ways.

My Dad is much quieter, even solemn now. He was the prankster in the family growing up. Now, he will obsessively pick at lint on the couch or floor, and when he finds trash ANYWHERE he picks it up and will throw it away.

My Mom is more talkative and fills time by reading things or sharing a story about the things in her surroundings. Her stories don’t jive with my reality, but they are tethered to things that did occur in the past.

My Mom has transformed the events leading up to their transition into Assisted Living. Today, She was wondering what year it was that they picked this specific unit and was pleased with their luck in getting one that let them watch the lobby entrance. She felt this place was much better than the prior apartment they had — the one we worked so hard to manage their transition out of and into this apartment.

I remember walking into the apartment with my Dad for the first time. I had to blink vigorously to keep the tears in my eyes. My Dad fully understood what was happening and I watched as his shoulders slumped a little when he looked around the empty apartment. My Mom joined us and complained about every feature the Executive Director mentioned when listing the positive attributes of the apartment.

At the time, I would never have believed that in 5 months, I’d be sitting with my mother who would be saying how lucky they were to get this apartment. Transformed.

Happy 60th Anniversary Mom and Dad


I struggle with those events that honor or mark an occasion when I know my parent’s don’t or won’t remember. I’m admitting this hoping I am not the only one that has battled this head game. I manage so many small details of my parent’s lives some days that the slight effort and scheduling to acknowledge the event feels overwhelming.

Then I remember that if my parents could, they would have celebrated this date.

I call to let my Mom know I am coming for a visit. She admits she is still in bed — it’s 10 a.m. I let her know I will be there in an hour. When I arrive my Dad answers the door. I wish him Happy Anniversary, and ask about Mom. She is still in bed, but dressed. She quickly gets up and joins us in the living room. I give my parents a fruit basket and “Happy Anniversary” Balloon on behalf of all their children.

When we talk about going down to get lunch, my Mom begs off. She says she is too dizzy to walk down to lunch. She is talking clearly so I assume she is just not eating enough. We bring her back food and she promises to eat it later.

After lunch we have a nice chat about how many couples make it to their 60th wedding anniversary. My Mom shares how lucky she feels they have been, which is now a staple of her conversation every time I visit. In the midst of the conversation, my Mom states “You need to move me to a smaller apartment after one of us dies. “

Just six months ago, the idea of moving them from Independent Living to Assisted Living was a major concern for me and my siblings. They have easily adapted to their new place that is less than 400 square feet. Now my Mom is already planning on moving to a smaller place.

I’m glad I made sure my parents could celebrate this day together. Rewarded.

How did you get Dad to buy the small bottle?

bigvodkaToday my 15-year old son came with me on my visit with my parents. Both of my parents were interested in running errands. Usually, my mom comes with me while my Dad takes a nap. Today, my Dad is excited to go to the store.

We had to park in the auxiliary lot, which means we had quite a walk to get to the car. I was glad to see my Dad moving so well. He shows no signs of a limp and the dance with the wheelchair two weeks ago is just another odd-ball story from this journey we are on.

For the third visit in a row, my mom wants to go look at “lollipops.”  That is what she now calls cotton underpants. She is only willing to buy one pair, so when we find the package of 3, she refuses to make the purchase. I calmly attend to my mom’s questions and let her make her own choice on this. I know I will have to buy them and sneak them in her drawer to get her to accept replacements.

While we are off on that mission, I asked my son to help Pop-Pop find the section with the alcohol. My dad wants to purchase some Vodka for him and Bourbon for my mom.

The drinking has posed some issues for us over the past few years. However, I’m more concerned that my parents have some things that keep them feeling independent and allow them to follow the same 5 pm “Quiet Time” ritual they have had since I was a small child. We run into trouble when they don’t realize they have already had their drink and return to the bottle for a second. Thankfully, they are now in an environment that can manage and care for my parents should they need help.

Typically, my Dad will grab the biggest bottle he can find. When I return empty-handed with my mom and we rejoin my son and Dad at check out, I’m surprised to see two quarts instead of two gallons.

As we are driving home, I ask my son how he managed to guide my Dad to the sensible choice. He chuckles and just mentions that when my Dad grabbed the first bottle, he was surprised at how large it was and just said, “Wow, that looks like a really huge bottle.”  My dad agreed, put it down and followed my son’s advice on which bottles to buy.

Out of the mouth of babes!  Blessed. 

Getting my parents to lunch

supportMy parents are now in Assisted Living which has removed pounds of worry in regard to my parent’s safety. This was a difficult transition since my parents did not recognize it was needed for a variety of reasons. 

With this new stage, we have a new set of needs and issues to manage. Thankfully, we know they are in a community designed to support them, but it’s not perfect left to run by itself. Being involved and working with the staff is an important skill I’m working on developing. I’m working through how to identify and manage those needs while also respecting my parents need for independence and privacy.

The first two months were freeing, but I’ve recognized some gaps that need to be addressed … like making sure my parents are eating their meals. Their apartment doesn’t have an oven or even a microwave, so the community provides all three meals. I take my parents shopping weekly and I know they are going through two loaves of bread a week.

When I brought this to the attention of the staff, they confirmed that they stop by to let my parents know when meals are being served.  There are two meal halls, so making sure my parent’s eat each meal isn’t as easy as it sounds. When I ask, my mom tells me they have only paid for one meal, so they choose to eat a sandwich in their apartment. I’m losing the communication battle on this one. We have discussed how nice it is that the community provides all three meals since my mom has no interest in cooking, but the concept doesn’t stick.

I stopped by to discuss it with the director since the simple reminders aren’t working. She shared that the staff reports that my dad wants to eat, but my mom keeps pulling him out of the meal hall. We chat through some strategies on how to get them to eat in the meal hall. We discuss letting them know of an empty table by the window that is reserved just for them as well as having the floor staff rephrase the announcement of lunch being served into an invitation to have a free lunch.

I’m glad I have trained staff in place that can help us figure this out. Supported. 

Letting go of the truth

truthpicI was raised to always tell the truth which some people find refreshing and others find crass. It’s taken me a while to understand how and when to share the truth, a partial truth and when to just keep my mouth closed.

As my family has been on the dementia journey the truth always seemed to create a roadblock for me. It took me months to accept and understand that what my parents said they fully believed was reality. At first I’d argue with it to try to demonstrate just how off their brains were behaving, but it only created conflict and made my mother distrustful and my dad would shut down.

On the other side of this rough road we traveled, I can now listen to and talk with my parents even when they are sharing information that is fictional. Now that my parents are in Assisted Living and I’m not worried about their safety or risk of being taken advantage of, I can just enjoy the time I spend with them. Matured. 


To revisit some of my past struggles with this, here are few of my stories:

How I Disarmed my Contentious Demented Mother

How Different Each Dementia Can Be

Accepting the New Truth from those with Dementia

How did he do at the track meet?

trackMy parents have adjusted well to being in Assisted Living. On my last visit, I told my parents I would not see them over the weekend because my son was running in a state track meet a few hours away.  My mom made a note that I was leaving town on her calendar.

When I returned to visit after the meet, my mom asks how our son did at the track meet. I’m surprised and pleased that she remembered this. She had only noted I was out-of-town, not that my son was running in a track meet. Most of the time her facts are so jumbled, I second guess reality. Today, my mom is crystal clear and interested to know how our son did. I was pleased to report he did well and just happy to be able to have a real conversation with my mom.

While I was visiting, I stopped by the medical office to drop off some records.  The care manager tells me my mom visited and requested an appointment with the psychologist. My mom told the care manager she is afraid that something is wrong with her brain and wants to get it checked.

Over the past year, my mom has been with no less than 4 doctor’s who have diagnosed dementia. I wonder if she was so wired to resist and fight, she was unable to really understand or accept the information.  I have discussed these visits previously in I only saw the doctor to discuss your father; Can we see your daughter alone; Can the geriatrician help move our parent’s forward; and How many times can you hear you have dementia?

Simplifying their lives has made quite a change in my mom. Calmed.

Making the transition to Assisted Living when your parents refuse – Part III

missionaccomplishedSo my parent’s licenses were revoked and they kept driving so we hid their cars. Then my parent’s started to take cabs between their two homes. This created a whole new set of issues since they would arrive without money or keys.

When they broke into their town house and called the police to report the break-in, we were dumb-struck. My dad realized what happened while my mom argued about it as I drove them to their apartment at the retirement community.

At this point, their retirement community was starting to get alarmed at my parent’s behavior. They called me to share the concern over them getting into cabs. We met with the staff who suggested we consider petitioning the courts for Guardianship / Conservatorship and force our parents into Assisted Living.

This process would have devastated my parents. The struggle over the cars and driving made us very aware of how much ego played a part in the needed transitions. We were also hesitant to make this a matter of public record. I was berated many times by my mother when she felt that I did something without first discussing it with my parents. I treated my parents the way I would want to be treated and did always discuss the issue with them, however, they often forgot the conversations. Eventually, the retirement community called in Adult Protective Services. My parents failed to remember their visits.

Eventually, what we found out was that as a resident of a Continuing Care Retirement Community (CCRC), the community had the ability to force my parents from Independent Living into Assisted Living. The community respected my parent’s privacy and never told us about this, but when they called to tell us they were going to move my parents, we quickly understood the silver lining in my parent’s choice for this retirement community.

While the organization of getting the move done was monumental and stressful, my siblings came into town to support the move and one of my brothers along with his wife, returned to clean out their town home and Independent Living apartment.

The three steps that helped us support our parent’s transition were:

  1. Address driving if you think it’s an unsafe activity for your parents and their doctor agrees.
  2. If they continue to drive disable or hide the cars.
  3. Look to their retirement community to see if they can help make the transition when it’s needed.

Finally, my parents are in the environment that suits their current needs and they are very happy in their new apartment. Accomplished.