Tag: parents with dementia

Understanding My Demented Parents’ Position

When I was 16 at an annual physical, I was diagnosed with a heart condition called mitral valve prolapse which turns out is pretty common. However, at the time, it was a major medical concern and I had weekly visits to a variety of different specialists. Apparently, it caused my heart to skip beats often. I remember the medical staff being amazed that I didn’t know I had a problem. I knew I sighed a lot, but I didn’t know that was unusual.

By the second half of my senior year, I was on a variety of heart medications. I remember being told at one point I would most likely have open heart surgery by the time I was 21.

The medicine made me feel horrible. At some point in my freshman year of college, I just decided to stop taking the medicine. I was always active and never felt limited by this issue. Through my twenties I kept my annual checkups and graduated out of care since all was well.  I never accepted the condition was a limitation – it didn’t limit me before I knew, so why was I letting it limit me after I knew?

I realized as I was getting my heart checked today that regardless of what the doctors had told me, I choose to go against their advice. I turned out just fine. Maybe that is how my parents view our concerns over their safety. Pondered.

It’s common for parents not to accept any help from their children.

Now that I have the social worker’s report on the chain of events, my hope is that she will drop some pearls of wisdom on me. My siblings and I agreed that we are working toward helping our parents live the life they want to lead. However, due to their cognitive state, they are unable to organize their lives to truly enjoy all the activities they can still do.

She shares that my parents were very aware they have a problem. She also tells me how sweet and relaxed they were during their visit, which is unusual for people who are so confused.

The social worker asks me for some background on what’s happening with my parents. My CliffsNotes version takes almost 30 minutes since I start it back ten years ago when my dad and I suggested to my mom she get a mental benchmark. At that point, she was repeating conversations and asking me for recipes for dishes I was making that were from her. I get up to the stroke and the two “interventions” that we’d done as their children where we shared with them our concern for their safety and welfare.

However, they don’t remember these discussions so any agreement is quickly negated. I tell her how much it hurts sometimes when my mom says “prove it” or is horribly dismissive when I follow up on something she asked me to do, but doesn’t remember.

She shares that it’s very common for parents to have difficulty accepting help from the children they raised. It really doesn’t make me feel any better, or allow my parents to lead the life they are so trying to maintain. Stymied.

I really want to believe what you say, but I can’t.

When I get a message from a social worker about my parents’ medical appointment, I’m a little shocked and confused. When I can’t reach the social worker, I call my sister who was on the phone with the social worker.

Apparently, my parents were at the hospital. This is the second time in two days. When they showed up today asking about an appointment and were confused, the hospital staff recognized something was wrong with their cognitive abilities.

I jump in the car and drive to my parents’ home in the retirement community. They are both there and my mom is on the phone with my sister when I walk in. “We weren’t in the ER yesterday,” my mom says. She immediately turns to my dad and asks him if they were.  At first he says, “I don’t remember,” then he quickly changes and says, “Yes, I took you there yesterday.”  He then excuses himself to go take a nap.

The call ends and I ask my mom if she wants something to eat. She says she just wants a Coke and we walk out to the living room to talk. She’s retelling me the story of her visit. I don’t really know the story, but remind myself that I can’t believe what she is saying. She has dementia and almost no short-term memory so anything out of her mouth is suspect. I really want to believe what she’s saying.

If I could believe her words again it would mean things are okay. She’s not demented and all of these issues don’t exist. Subdued. 

Love More and Expect Less.

I was a sandwich generation caregiver. I was raising two children and caring for two parents with undiagnosed cognitive issues. It was incredibly difficult. I turned to blogging to help keep my siblings in touch with what was going on and found it became my own public therapy. I was pleased to learn how many other adult family caregivers found hope, healing, camaraderie, and a few laughs in my posts. I originally wrote this in 2012 and am resharing one of the many life lessons I learned on my journey. 

It is hard to deal with any loved one when they change. Over the past two years, I’ve gone from passive to confrontational to detached. And repeated this cycle a few times.

When I started to view my parents through the filter of “head injury,” my visits with my parents changed, in a positive way. They have no control over the changes to their cognition and I have to be patient.

Today, their united front reporting that nothing is wrong is unraveling. The number of late bill payments, denial of products purchased with their credit card and lost calendars and checkbooks are increasing.

Meanwhile, my siblings and I collaborate and support each other as we all deal with my parents in different ways and on different timetables.

On one recent post, Kate Swaffer who is dealing with her own dementia sent me a note encouraging me to “Love More and Expect Less.”  I’m still refining my own coping mechanisms and this was timely and sage advice. Appeased. 

Dad got up at 4 a.m. and ate breakfast.

My brother calls to share with me what’s going on at home. At first my mom is very combative about any need to visit a doctor, or even just to give a blood sample.

My brother and sister are staying with my parents while I’m away. We thought this would be the perfect time to have someone help make sure they don’t eat before their blood test. While this seems like a simple task, with no short-term memory and no knowledge or sense of your limitations, my parents have no system to help them manage tasks like this but do not know it.

Our interest is to keep them safe and part of that process is to understand their physical and mental state. Step one was the visit with the psychologist. Step two is a physical. The blood work requested means they need to fast. My brother and sister are with them to ensure they don’t eat before the blood test.

This morning they were going to get the test and my parents said they were on board. However, when my brother gets up, he learns that my dad got up at 4 a.m. and ate breakfast. I am constantly considering how crafty they have become. Was there some element to this action to prevent the blood test from getting done?

We still have Monday. I wish them luck!　Foiled.

Conversational questions to ask a parent who has dementia

One of the things we enjoy about family is the familiarity. We have a routine and pattern to our interaction that is easy and comfortable. Once short-term memory is gone and dementia creeps in, that ease and comfort is gone.

One of the hardest things for me to adapt to was how to spend time with these new people who are still my parents. I started to ask them leading questions and I used my time to learn more about them. I use facts I know and weave them into questions. Here are some examples of questions and how I incorporate them into a conversation with my parents:

Mom, after you finished up your degree at [college], what did you do?
– How did you get that job?
– Did you like the job?

Dad, how did you propose to mom?
– Did you ask her father first?

When did the two of you meet?
– Did you immediately know you liked him/her?

Some general questions to use to get the ball rolling:
– You had x siblings, who were you most like / unlike?
– Was there one sibling you spent time with? What did you do together?
– Did you ever have any nicknames growing up? How did you get that nickname?
– What was the name of your elementary/middle/high school?
– Did you have a favorite teacher?
– What was the first car you drove?

Over the course of a year, I created hundreds of questions.* Growing up, Siblings, Spouse, Parents, Firsts, Traditions. Empowered.

*I turned  these questions into a book called the MemoryBanc Monograph that can be found at www.MemoryBanc.com.


Call us back so we can see if our phone is still off the hook

There are so many instances where my parents’ response to something simple is off. I’m starting to get embarrassed about writing about them.  However, not embarrassed enough to stop writing – your comments and notes make this journey easier. Thank you.

When I was trying to reach my parents at their retirement home, their phone is continuously busy. If you have ever called my mom, you will know that a two-minute call is laborious for her, so I know after getting the signal over a period of an hour that they must not have put it back on the cradle. I called the front desk of the retirement community and they sent security to their door—no one is home.

When I check my home phone, I have a message from them and confirm that they didn’t hang up after they called. I leave a message for them at their townhouse that they left the phone off the hook at their other place.

Later that night I got a message from my dad—“Can you call us back so we can see if our phone is still off the hook?”

I want to treat others as I’d like them to treat me. I’d like to know if I did that, but giving that information to my parents at this point is just not helpful. It caused them to drive back to the retirement community at night and call me, not really understanding what the problem was or how to easily fix it. Conflicted.

Hey, I know you

I’m sure you know the feeling of seeing someone you know but in a place you aren’t expecting. You almost can feel your brain hiccup.

My parents called and confirmed we’d meet at their house at 4:45 p.m. I stop by and realize they probably went to the club instead of coming to their townhouse. I drive to the club and find them sitting in their usual seats by the window to watch the airplanes. As I get closer, I watch as my mom sees me but strains to make sense of the recognition in her brain. She smiles, “Hey, I know you.”

I say hello and ask them if they recall that we were going to meet at the townhouse? Crickets. There is no apology, no recognition. My mom jumps right into asking me to pull up a chair and join them for dinner. I remind them I can’t; I have to pick my son up in a half hour.

I know there might be a day when I see my mom and there will be no recognition of me. As frustrated as I am in having them squander my time, I focus on the positive. Today, she still knows me—not sure she is going to forever. Distracted.