7. Don’t remind them of a death of a loved one or pet.

7. This is a deeper dive into the seventh item from my list of things to never say to a person diagnosed with dementia

Mom and Dad on their 60th wedding anniversary.

This one is a TOUGH and how it applies to your situation is a judgement call. Just thinking about the calls I would get from my mom asking me where dad was brings tears to my eyes. While the idea that a couple is living together with dementia sounds awful, I think it was comforting to both of my parents once they were in Assisted Living and had the right types of support around them to keep them safe. A few months after they moved in, they celebrated their 60th wedding anniversary.


Within the year, my dad was diagnosed with a cancerous tumor on the back of his tongue. He died exactly one month after he was diagnosed. We were all numb at the choices and speed to which everything moved.

For weeks, mom would call me angry that I hadn’t told her when dad was coming back from the hospital. We believed that mom needed to have the opportunity to grieve and bury her husband of 60 years. How do you do that when someone has no short term memory?

I was thankful that we took a picture of all of us around dad after he had passed away. It is the saddest picture I have ever seen. I wasn’t really sure what struck us all to decide to have the hospice nurse take the photo. However, it allowed me to help give my mom a way to remember.

As a military veteran, dad’s burial was going to have to wait for months.  While I would never bring up the topic, when mom demanded that I take her to see him in the hospital, and no amount of redirecting worked, I would shift to talk about a fun memory of dad. I could offer the picture if she didn’t believe that we had all been bedside to say goodbye.

Some days mom fully remembered that dad was gone, on other’s she just didn’t understand how he was gone and it pained her that she didn’t remember any of it.

When my mom would ask about her sister who lived out of the area and passed away the same year, I would join her in wondering how she was doing. I didn’t feel she needed to know that her sister had passed away from her own health complications. However, when it came to where her spouse of 60 years was, I often ended up telling her that he had passed away if redirecting the topic wasn’t working. I would always try to include a good memory we could discuss instead of having to linger on the death.

I think this one boils down to the individual. It was easier to avoid any reminder of dad’s passing the further we got away from his death. After the funeral, we had a beautiful montage of pictures made up for the service that we hoped convey that we had honored him and all been together to celebrate his life.

Dementia sucks in so many ways. What I learned was that I needed to adapt to help my mom in any way that I could. Sometimes it meant delivering the news that dad had passed away, but most often, it mean shielding her from unpleasant details that none of us wanted to revisit. Empty.


The unmistakable scent of Mom

momsstuffOne of the best gifts my mother gave to us was the summary of her funeral wishes that she wrote up more than 30 years ago, and had revised in early 2002 when they updated their estate plan to include a trust. In her guidance, she mentioned the dress she wanted to be buried in. Had she not done that, I just realized she might have been buried unclothed–or it least not in something she loved.

Over the course of our journey and this blog, I have told you about the two times we have moved mom. First, when we moved mom and dad from their Independent Living residence into Assisted Living. Then after dad passed away and Assisted Living was no longer the best place for mom, we moved her into a Memory Care community. During the first move, we took special care to find and store the dress she wanted to be buried in. Knowing that in advance and being able to plan for it is helping me move toward her life celebration service easier. I don’t have to wonder, squabble with siblings about the choice, or feel guilty because in the overwhelming process of one of the moves, we ended up donating her silk ball gown thinking she would never again wear it again.

Today as I drove mom’s clothes to the funeral home, I realize the car is filled with the scent of my mother.  It has been years since I smelled the mix of Aqua Net hairspray and Charlie perfume. I start to wage a battle of my will over my tear ducts. I lose momentarily and then begin to fill my mind with all the wonderful memories of mom from my 50+ years with her.

My grief over the loss continues to battle my relief and understanding that mom’s journey on this planet had run it’s course. Now is the time to revisit all the great experiences, lessons, and memories that contribute to the legacy of mom. Cherished.

What the death of Robin Williams can teach us

photo credit: nbc.com

By all accounts, Robin Williams had his estate plan zipped-up. He had a will and trust and even named professional trustees, so why is the family at odds over things after his death?

Grief impacts everyone very differently. As a suicide, it’s not just sudden but the nature of the death can complicate the grieving process. As caregivers, we know that many of these family issues surface well before a death.

From the latest reports, there is disagreement about how items are defined. A colleague of mine who is a professional appraiser has shared how contentious items with personal meaning but little value can wreak on a family. She commented that it’s interesting that so many parents who raised kids that argued over the last cookie expect their adult children to behave any better when it comes to settling their estate.

It seems Robin Williams put immense thought into his plan, but it sounds like there is some ambiguity and now both his wife and children who are still grieving are arguing over his things.

What Robin Williams Can Teach Us: It’s not enough to create the perfect estate plan. You have to tell those people who are impacted about your plan. Make it a part of normal conversations and allow your loved ones to ask questions and understand your wishes. You might not be around to appreciate it, but they will. And for those of caring for loved ones with dementia, we know that someone may have to make many decisions for us and our assets well before a death.

Robin  was known for his improvisational skills. As caregivers, we are required to improvise–and approaching each interaction with humor is a handy tool on this journey. Reminded. 

Good Riddance to Ten Pounds of Grief

muffintopA year ago today, my Dad passed away. While he had Alzheimer’s, he died from a tumor on the back of his tongue. It was a harrowing experience, but I knew it was a blessing that the cancer seemed to take him so swiftly. I miss him, but I missed him when he was still here but the Alzheimer’s began to steal parts of him away. When he was here, I could visit him, chat and even get a hug.

A few months after his death, I was suddenly ten pounds heavier. I don’t gain weight easily and have a pretty solid tennis habit with regular weekly exercise. The swift change surprised me. I started to count calories and charted my exercise. Nothing changed. I started to think about the weight as my “grief fat.” I desperately wanted to have both the fat and grief gone.

It hung around my middle and plagued me, seeping out at inconvenient times, just like my grief.

Some girlfriends were chatting about a “metabolism” diet and I figured I would give it a try. I had moved into a period where I was just too busy to eat well, regularly. I would eat breakfast early, then lunch at 3 PM ruining dinner and then would graze before bed on dinner. Had I messed up my metabolism or was it just age sneaking up on me in inconvenient ways? We started the diet together and doing it with others definitely helped me. I started to pack meals and snacks and made sure I ate every 3 hours. I made it through the four-week plan and emerged ten pounds lighter. I’m pleased that even after the diet ended, I continued to lose a few more pounds.

I’m relieved to have lost my “grief fat” before the anniversary of my Dad’s death. As I hit the one-year marker, my grief lingers, but I’m quicker to recover as I reflect on his legacy and all the wonderful attributes of him that live on in me. Encouraged. 

Some personality traits still shine through

sunsetMy Mom is having a difficult time adjusting to the loss of my Dad. She has no short-term memory and combined with her dementia, comprehending that he died over a month ago is incomprehensible.

She perseverates on details of the burial planning that are done, on information that is incorrect and it’s clear this change has knocked her down a peg cognitively. We look at her calendar, we discuss what was done and she writes it down, but in an instant, those ideas are lost and she begins again.

As we were sitting and talking through my Mom’s questions, one of the staffers from Assisted Living came in to check on my Mom and remind her it was lunch time. My Mom was not interested in going to lunch so she stands up, walks the lady to the door while asking her a question about the new nameplate that has been ordered for her taking her outside her apartment. She swiftly closes the door on the staffer and returns to restart the discussion with me that we have already had countless times before.

I was impressed at my Mom’s skill in managing to get the woman out of her apartment without being rude. Unfortunately, I will not benefit from any remaining social skills today and am able to sit with my Mom with a smile on my face as she tries to absorb the information that will make her feel more comforted. It was a pleasure to see my Mom again, if even for a few moments. Accepted. 


Thank you for Documenting your Burial Wishes

brilliant mindThe death of my father has been easier to manage because he had done so much advance preparation.

My parents worked to update their estate and financial plans in 2002. Most of you have been reading about my journey to pull together the information I have needed to assist them which was the reason I launched MemoryBanc almost two years ago. A Durable Power of Attorney has its limits and there are several financial institutions that won’t accept it. Helping someone requires more information than traditional estate and financial planning provides.

In 2009, my Dad went the extra mile and wrote up his wishes – funeral, casket choice, songs, what we should bury him in … as well as several varieties of his obituary! He gave me a copy and it was sitting in my safe … until we needed it.

My Dad was a decorated military veteran and served for 35 years. He then left to a civilian career and consulted on environmental and engineering issues around the globe. He even served with the Coalition Provisional Authority (CPA) in Iraq. We still have some road to travel to finalize all the details (thanks to my brother for stepping in – they all aren’t that trivial) and thankfully, many of his colleagues are helping us manage this process who know more about his career and the military process for burial than we really do.

My Mom has been surprised by all the work my Dad did in advance. What a gift he left.

I appreciate what he did so we can do some simple task management without having to really ponder which option to choose. I continue to be impressed by the brilliant mind of my Dad the engineer. Blessed. 


Documenting all of your personal details with the MemoryBanc Register

A past colleague wrote this book which can help you through the process of planning: The Ultimate To-Do List When Your Loved One Dies

The Brilliant, yet Ghoulish, Request from my Mom

adamsfamilyIn the week following my father’s death, my mom is just plain mean. I learned a while ago that my Mom goes mean when she is scared or feels like she has no control over what is happening. We tried to quickly figure out how to help my Mom understand and give her reminders for recent events and what was coming.

One of my brothers was handling most of the daily visits and wrote up a summary of events and dates so she could have all the information available. We just needed her to remember to look on the refrigerator or dig through one of the many piles in which we left a copy of the summary.

The thing that helped the most was the photograph my Mom insisted we take right after my father died. All of us (me, my siblings and Mom) were at his bedside. My Mom asks if one of us has a camera so we can take a picture of us with our now deceased Dad. We decide that we will fulfill our Mom’s request but are all very reticent to have this picture taken.The Nurse comes in and shares that our request is not that strange and takes several shots using the camera on my phone.

These pictures are the saddest and most unusual family portrait. I know how much my Mom loves pictures and I print out two copies for my brother to share with Mom. She tapes them to her bureau mirror in the bedroom.

My Mom has been calling at night and asking “Where is your Father” or “Why didn’t you tell me your Father died?” in a very mean and accusatory tone.  I would gently walk my Mom through the timing, direct her to the summary on the refrigerator and the picture on her bureau. The information calms my Mom. She doesn’t remember and has to reabsorb this loss many times each day.

I would have never thought to take a picture, but have found that picture so helpful. My Mom understands the loss — and can see that we were all there to say goodbye together. Comforted. 

The Cruelity of Dementia

dejavuI have watched as my parents have gotten the same bad bit of news over and over again. It’s like a sinister twist on deja vu.

When we started to get them diagnosed, we were hopeful that the third meeting with the medical team assembled would make a difference. Then, I watched during a 3-hour meeting when my parents got the results of their cognitive mental testing and finally realized that no matter how many times; who the information came from; or how much data was behind it, my parents were unable to receive that they had symptoms of dementia. The conversations were painful to witness.

Some of this was due to their dementia, and some of it I think was due to their united front. Their behavior seemed more like co-dependency, but together, they had managed longer independently than they would have had they been alone. I likened them at one point to a gang of two.

And now there is just one. My Mom is having a very hard time remembering, accepting and dealing with the loss of her husband of 60 years. For the first week, she would call and ask if her husband was still in the hospital or if it were true that he had passed away. I remember the burst of grief I felt when the Chaplain told me and am sad that my Mom has to experience this repeatedly. Angered.

Grief is Exhausting

flagdrappedMy Dad died a week ago. While he suffered from dementia, the time that a doctor first found a lesion on his tongue, to a diagnosis and his death was 4 weeks.

I’ve been mourning my Dad’s loss for several years as his short-term memory vanished and being able to have a conversation got more difficult. The loss of the car, the end to his racquetball and the changing dynamics of his independent life muted his humor. The sudden end due to cancer was a shock.

We have been mired implementing his burial plans and communicating the details and information about his death to our extended family, friends and his vast array of former colleagues. I cried so much the first two days, I was starting to worry about myself and wondered if my glum was preventing my children to feel like they could grieve. By Day 4 I could discuss that my Dad died without breaking into tears and each day has been getting better – until today.

They say it’s normal to feel the roller coaster of grief as you process your loss. We were asked to return to the funeral home to identify my Dad. My one brother stayed in town and is helping manage through the details.

When we arrived we are told we will be escorted to the parlor, I’m confused. I thought we were going to the basement cellar where they would roll out body in one of the morgue like storage units you see on TV and confirm that is our father. I even brought a sweater on this 85 degree day for fear I would get cold.

My Dad is laid out in an open casket in his “dress blues” with an American flag over the casket. He looks peaceful and I find myself rushing to touch him one more time. Loved.

Good Morning and Good-Bye

goodbyeWhen I arrive to visit my Dad in the morning, he is breathing very heavy, short breaths. He seems more comatose than asleep. The nurse comes in and gives him some morphine. I ask her what his breathing like this means and she says it typically signifies pain. She tells me the Doctor will be in soon.

They decide to move my Dad to morphine more frequently. His breathing is not slowing down. He now has a temperature. I read their booklet and believe my Dad is in his final hours. I ask the doctor to give me some guidance on a window of time. She tells me based on how fast my Dad’s condition has declined since yesterday, she would guess hours to days.

My siblings and Mom are all driving to the facility so I send out a text telling them what I just was told.

I’m asked to leave the room so they can bathe my Dad and I go sit by the fireplace in the family meeting room. I ask them to let me know when I can rejoin my Dad. Within 20 minutes the Doctor rounds the corner with the Chaplain.

I know what’s coming. When the Chaplain asks me for my name, I can barely get it out. It takes the Chaplain three tries to understand my name is Kay.

He tells me my Dad is gone and I double over in grief. I’m surprise at how hard it hit me. I am happy he did not suffer long, but know that I will miss him terribly.  Even with his dementia and tethered tongue, he was kind and always interested in how the kids, my husband and I were doing.

I sit by my Dad’s bedside until the rest of my family arrives. Grief-Stricken.