Category: My Dementia Caregiver Story

It takes all four of us to manage the move

fourkids (2)The past year has made me regret not having more than two children. Since I grew up with four kids in my family, I always believed I would have four children myself. That was until I had the first one! He was a tough baby, or possibly, I was an ill-prepared mom.

I started late, having my first at 33, so that by the time I was ready and actually did get pregnant, my second arrived to a 38-year-old mother. Given all the high-risk discussions and the additional needs just a second child brought, my husband and I felt for us, it was too late to have more. I am lucky to have two healthy kids.

On the day of the move with my parent’s, we can barely manage my mom between the four of us. Our game plan was that two of us would give our parents a specific task to keep them busy while the other two would manage the move and movers. My mom always behaved nicer when there were two children in front of her — she would often bully you if you showed up alone.

When the movers arrived we have them start with the bedroom. While they are loading up the furniture, we task our parents to decide which sofa set they want in the new apartment. My sister and I invite my dad to go to the new apartment.  My mom is furiously trying to redirect the movers. My dad invites my mom along and she comes with us to the new apartment. Our job is to kill time so the movers can move.

After we linger in the apartment, we suggest getting lunch. On our way to the dining room, my mom sees their furniture being moved down the hall and takes off for their old apartment. My dad decides to follow me into the lunch room. My sister takes off to the old apartment after my mom.

My dad and I order lunch and try to find a topic to discuss. It’s only been two hours since breakfast so I’m unable to really eat anything. I know if I don’t eat, my dad won’t eat so I try to at least fill up my plate with a salad and some fruit and move it around on my plate.

My dad is ready for this move and does not want to fight it. My mom is making him very uncomfortable. I ask if he will come with me to the grocery store and we can pick up some of his favorites snacks for the new apartment. He agrees.

My mom and sister make their way to lunch and we tell them of our plans. We invite my mom along with us. She is not interested.

We all go back to the apartment and my mom is very upset. She keeps trying to tell the movers to put the furniture back and runs to the office of the Executive Director. I leave my mom to my siblings to manage and take my dad out to shop. Wandered.

I’m calling a lawyer

My parents have now been notified that they are going to be moved into Assisted Living in two days. My mom is very upset over this and wants to fight it while my dad has agreed to go along with the recommendation.

legal scaleWe tried to prepare for this and limit the escape options. Our parents have surprised us with their smarts on this journey. When we thought disabling the car would keep them from behind the wheel, they manage to get someone to “fix” the car. We know to stay on our toes now.

After lunch, my mom decides that she’s going to demand 30 days notice and wants to speak to a lawyer. My mom get’s my dad back on her side and announces “I’m calling a lawyer.”

The retirement community did not do notify my parents and expect them to move in two days. They called me about this two weeks ago and I asked for some time to put the pieces in place so that we could make this happen. Part of the process included getting outside counsel from a lawyer to confirm that they had the right to move my parents and on a time line the retirement community could dictate. I also wanted to make sure my siblings could be in town to help and show a united front in support of this move.

My parents have done enough things, and most recently something that could have harmed another resident, that the retirement community is invoking the rights my parents gave them when they moved in. The retirement community is going to transfer my parents into the next level of care. The retirement community tried to help my parents get to this decision on their own, but none of the attempts worked – this is the last option.

We sit as my mom goes into the kitchen, picks up the phone, has a short conversation requesting a meeting about “real estate” and confirms a meeting at their apartment tomorrow at 1 PM. My mom returns and shows my dad the name of the person she called. It happens to be a lawyer listed in the directory of the retirement community. Witnessed.  

The level of sneakiness to which I sank

coke offerWhile both of my parents have varying stages of dementia, its my mom that is difficult to assist. Some days she has trouble understanding and comes across as illogical and mean. I finally was able to approach her and be the type of caregiver I needed to be by telling myself she has a head injury that has changed her personality.

When she does not like what you tell her or how you say it, she get’s mean. She squints her eyes, her lips curl into a cruel smile and she will tell you what a horrible child you are, how disrespectful you have become, or challenge you to “prove it.” The only way for me to keep the conversation from escalating is to play smiling possum. I will muster a smile and just do not respond. I can usually find a way to excuse myself, knowing that when I return the conversation will repeat. If I’m challenged to respond, I will often smile, shrug my shoulders and say “I don’t know.”

I learned the “I don’t know” trick from my dad. As the one who has been living with my mom, he found this worked to end a conversation. At times I thought his memory was really bad (he has been diagnosed with Alzheimer’s), but when I would talk to my dad later about the topic, he would know the answer. In many situations, answering my mom’s question would only escalate her anxiety. Instinctively, he adapted.

My mom’s doctor prescribed medication (Ativan) to relieve her anxiety, and she won’t take it. I’ve tried a variety of methods with no success.

Knowing how difficult the coming day will be when we start the physical move of my parents from their independent living apartment to assisted living, I manage to remove all the Coke from my parents home. I decided I would bring her a Coke that includes one dose of Ativan as the doctor prescribed (I offered her a 1/4 of the can mixed with the pill I ground to a powder). Coke is one of the three things my mom will drink.

During this stage of my mom’s dementia, the Ativan seems to help minimize her anxiety and improve her daily interactions with everyone.

The first thing I did when I arrived was to ask “Mom, would you like some Coke this morning?” Outed.

We have a meeting with the Executive Director at 11 a.m.

jerkToday is the day when my parents will be told that they are being transferred to Assisted Living. My mom knew she had this appointment with the Executive Director and has been asking me if I think it’s about moving the frame chopper into their apartment. When I arrive today my mom is anxious.

My parents didn’t ask me to accompany them, but the retirement community requires that I’m at this meeting since I hold my parents power-of-attorney. My parents are happy to see me and my mom wants to discuss all the reasons they should be allowed to move the frame chopper into their apartment. We spend some time walking through the measurements again.

I feel like a jerk. I know what’s coming. I sit down and we talk through how the chopper would fit in their guest bedroom. She shares that she’s worried they might be asked to give up the second half of their apartment. They took a 2 bedroom and connected it to a 1 bedroom.

I remind her that they moved into this retirement community because they wanted help managing through the retirement years. The apartment they created and decorated was featured on many of the open houses the community hosts for prospective residents. It is a nice, gracious apartment. She tells me I’m a good talker and I stated that so well, I need to speak on their behalf at the meeting today. Double Jerk!

We have been concerned for my parents safety and enough events have occurred that the retirement community is exercising their right to transition my parents to Assisted Living. My parents have resisted every change or suggestion of change. We knew this would be difficult, so my siblings and I worked with the Executive Director on how to best communicate and make this transition.

I tell my mom that the Executive Director called this meeting and we just need to show up to hear what she has to say. I know I played a role in orchestrating how this news would be communicated and while I know it’s the right decision, the process has made me uncomfortable. Shamefaced.

Grieving for my mother while she’s berating me

angry ladyFor the better part of two years, my mom has been uncharacteristically suspicious and mean. It took me a while to adapt to the understanding that the changes in her brain were altering her personality in negative ways. My survival mechanism has been to remind myself, over and over, that my mom has a head injury. It helped me better understand how to approach and interact with my mom.

I have three people I want to thank for helping me adjust my mindset:

  1. My sister–in-law who works with individuals who have head injuries and has explained how similar the issues are to my mother’s dementia. She raises funds every year to support new research to assist head injury survivors.
  2. Kate Swaffer who is diagnosed with early on-set dementia.
  3. Lynda Alicudo with Leading Executive who suggested I start to mourn the loss of my mother.  It helped me appreciate the familiar moments with my mom and recognize that her behavior was not personal.

As I reflect on how much my mom has changed, I realize how much I have changed. My mom is unable to adapt, so I had to adapt.

I also recognize that people change and move in and out of our lives as we age. My friendships have changed as circumstances and personal choices divide and reconnect us over the years. I understand that right now, I don’t like my mom. However, I will ensure that she is safe and happy and enjoy the moments when the mom who raises me reappears. Thank you to the women in my life who have helped me on this journey.  Appreciated.

Who Controls YOUR Digital Legacy?

digital legacy graphicWhile this story doesn’t apply to my parents, it’s a wake up call to those of us with a myriad of online accounts and digital assets.

Printed in The Wall Street Journal on January 5, 2013, Life and Death Online, Who Controls a Digital Legacy? is a raw story that validates the meaning and sense of loss that could come if no one has access to your digital legacy.

At minimum, you should have documented your usernames and pass codes and told someone you trust where to find them. If you have done that, I urge you to go back and note which ones pull from credit cards or other online payment accounts. Help those who would step in to help by at least organizing your online estate.

A more robust exploration of this topic was done in The New York Times (2011) in Cyberspace When You’re Dead. It provides a variety of examples exploring both the impact of being able to continue to access the accounts to the added grief to those who lost access. While it does discuss some online options to protect your digital legacy — I continue to beat the drum to organize all of your materials in one place!

In a related story, several states seem to be discussing how to deal with digital estates.  A New Hampshire bill would give all access rights to the executor. I have talked to several Estate Attorneys who are now working with clients to identify a “digital executor” who may be different from the traditional executor  role. The same issues will be faced by both executors — where are all your personal, financial, online and household records and details?

Have you ever had to view the profile of a friend on Facebook or LinkedIn that passed? It’s disconcerting. Even worse, my husband told me about spam emails he’s getting from a friend who died over a year ago. Apparently the spammers have reached a new low. It won’t take you more than 20 minutes to create a quick list that could mean a lot to those around you. Preached. 

Did we plan on having all four kids?

four diapersI don’t quite understand the dynamic, but I’m starting to become a part of my parents. The trust I was appalled they didn’t give me months ago has developed over time. It could leave at any moment, but for the last month, they freely accept and seem to appreciate my help.

As I learned to sit quietly when they recreate history and events, my parents learned that I could help fill in the gaps when they were struggling — if they asked.

My mom asks if I expected to be raising four kids. I only have two. I’m touched that she realizes that the time and energy I’m spending with them now is like having two additional children. I told her I always wanted four kids so this is working out well for me.

My dad turns to my mom and asks her if they planned to have four kids or did it just happen? My mom crabs at my dad about leaving for war and leaving her with kids. She is in a cranky mood.

I jump in given my mom’s crabby response and share that my belief was that they had planned on stopping at two. My sister K. was first and my brother W. second. My dad is a 3rd (III) and we heard stories how our great-grandmother “Granise” called on my parents to find out why they didn’t pass down the tradition and name their first son the family name (her husband was the 1st).

They promised Granise they would name their next son the family name (and would jokingly say because they never expected to have another child.) My mom is outraged by my story. “I just can’t believe that!”

For a moment, I sense what it’s like to have dementia as Kate Swaffer described it to me. At 48 years of age, I am not sure whether my belief that I was a mistake was real or imagined. Unsettled. 

Avoid Mock Holidays after Dementia is Diagnosed

My in-laws were in town two weekends ago and we decided to celebrate Thanksgiving early. We invited my parents and I went to pick them up before our luncheon feast.

In the car on the way over my parents were unusually confounded that it was already Thanksgiving. “No, we are just pretending it is so we can celebrate when Todd’s (my husband) parents are in town.”  They would accept the explanation – only for the topic to be raised again five minutes later.

At one point my dad exclaimed “I thought it was the weekend, I can’t believe it’s Thursday!” I then shared it was the weekend.

We had a great meal together. I had not seen my parents eat as much in months. However, I realize I need to simplify how I talk about the holidays. The advance planning is stressful to my mom in particular. Now, I simply put times and events on their calendar with my name so they know I will be there to coordinate with them.

We will get to spend the real Thanksgiving at our house tomorrow. The big holidays always make you wonder how more of these we will get to spend together. Appreciated.

What to do when your conversation with your parent turns unreasonable

When angry with someone, it helps to sit down and think about the problem.

A friend told me the other day she was trapped in a debate with her parents who were going to fire their beloved cleaning lady. Her parents were convinced they were going to have to pay her social security. She did not work enough to come close to the hours needed, but her parents would not be swayed on this topic. She was at a loss on how to move through this conversation.

As I have shared many of the changes in my parents, many of those around me have come to realize they might be dealing with a parent who has some form of dementia. At 65, the Alzheimer’s Association reports one in eight suffer from some form of dementia and by 85, that number is one in two! The changes, even subtle ones, will impact your relationship with your parent.

I shared with my friend that when a conversation seems unreasonable or gets contentious; I abort the conversation as quickly and as pleasantly as I can. My go-to moves include excusing myself to:

  1. Use the restroom
  2. Get something to drink
  3. Make a phone call

If I return and they want to revisit the topic, I will move to the more elaborate options:

  1. Go to the grocery store
  2. Visit the art gallery in the retirement community
  3. Ask my dad if he got the mail today

Think back on your conversations and you might recall that your parent was very emotional. I found that my parents feed off the emotion I’m displaying. They were not listening to a word I said and the conversation would cycle through the same topics. I would grow more agitated with each cycle.

Now, I end the conversation and at a later time, consider if there is a way around the issue. In most cases, I won’t even comment until I’m specifically asked a question (this was VERY difficult for me).

In the instance of my friend, I suggested she tell her parents that she could pay the cleaning lady from her business account where due to her hours, she won’t have to pay the social security and employment taxes. While she has no intention of putting the expense through the business and would pay it from her personal account – it is a reasonable option that her parents might easily accept.

I had to learn that the civilized debate my parents encouraged at the dinner table was no longer part of our family dynamic. I needed to change to help my parents navigate their evolving landscape. Explored.

Managing through the stages of dementia in a loved one

For many of us living with, supporting, assisting a loved one with dementia, the transition is very difficult and tricky.

I met a colleague for coffee and he shared with me recently that his wife has dementia. I asked him how he was doing because I can only imagine how difficult this might be to a spouse. He mentioned that it’s changed his routines and his work habits but it was manageable.

I asked him if he considered getting someone to help. We talked this through and I fully understand where he sits. How do you bring someone in to help when the person doesn’t recognize they have dementia?

We recognize and work to understand how the dementia is changing our loved ones. It’s hard to tell when they have reached the tipping point and it’s time to transition to a more robust network of care solutions. I think that answer only comes from within each one of us. Introspect.

If you don’t show up, we will just walk home.

As I’m about to walk into a work event last night, my mom calls. “Kay, our brains are bad and we don’t know how to get food. Can you come pick us up and take us to the club for dinner?”

Dread, sadness and frustration hit me all at once. My parents told me they were going to stay in the retirement community because they recognized they were struggling.  However, they  recently reported to me they again broke back into their town house, and my siblings report they got a letter saying they are living at their town house now.

I’m sad because I know they must be frightened and I miss my parents.

I’m frustrated because I can’t help people who refuse to accept help beyond the emergencies they create.

I’m filled with dread because I know the only way to move forward is to sue my parents for guardianship and conservatorship.

I offer to have food delivered. She then shouts to my father who says he has money for a cab. She then tells me “If you don’t show up, we will just walk home.”  I remind her they have a credit card but that if she needs a ride I will come pick them up. I feel manipulated.

The toughest period in supporting someone with dementia seems to be this transitional period. They want independence, while we crave for them safety. We sometimes get to spend wonderful moments with our loved ones, and other times face a person in our loved ones skin that is foreign to us. Confounded.