Tag: parents

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. 

It’s been a long time since I waited in the “waiting room”

shocked babyOn our follow-up visit with the geriatrician, my dad get’s called back … alone. Both parents saw the doctor a week ago, but he didn’t do more than talk with and cognitively test my parents. Today was so he could do some additional medical tests. 

For almost a year I have sat in on every medical appointment except one or two when my siblings have been in town. Due to the cognitive states of my parents, the doctor’s required someone was with them during each appointment.

I immediately go to the front desk to raise my concern. They let me know it’s fine, the doctor wants to see my parents alone.

While I waited with my mom, she wanted to talk about why we were here. I share that this is the primary care doctor and he’s reviewing their medications. For the first time, my mom pulls out her checkbook and recites that she is on Lipitor and Aggrenox. You would have really seen my shocked face. My mom has denied she was prescribed any medicines for so long, I avoid the topic. However, just last week she wanted me to explain the medicines in her bathroom. I told her they would help her memory and prevent her from having a stroke. I knew those were two carrots she would stretch to grasp.

The conversation meanders to my father. I remark that Dad has been given an “Alzheimer’s diagnosis.” I know she really didn’t catch it when the neurologist reported it, but the past few weeks she has been very open to discussing the difficulty in helping my father if we are alone.

As if on cue, the social worker stops by to visit with us. My mom tells her that we were just discussing what the care options were for helping with my dad. This social worker really is the “elder-whisperer” — my parents are very private people and my mom is openly sharing with not just me, but the social worker. We discuss that they could move into assisted living or she could hire someone to get dad on a routine while she runs errands or plays bridge and they stay in independent living.

My mom asks if my dad could move into assisted living while she says in the independent living apartment. The naval blockade has cracked. My parents have been so united for the past year, I did not think my mom would consider him going to assisted living without her. Surprised.

Really, you didn’t want to move into the retirement community?

Sarcasm SocietyI reached a personal milestone. My mom admits to something I believed AND I resisted the urge to respond in a snarky manner. 

As you can tell, I will take my wins any way I can count them.

My mom tells me that  “Your father was right about this place. I did not want to move into the retirement community, but it was a smart decision.” She went on to tell me about how she woke up in the middle of the night and looked out her window. She told me how beautiful the moon was reflecting on the lake. “We didn’t have a lake at the town house.”

Sarcastic Kay wants to say “Really, you didn’t want to move into the retirement community?  I never imagined!”

I’ve written a lot about how my mom / parents would erect road blocks and reasons why they couldn’t move into the retirement community. Over the past few months, we have done all we could to remove each road block.

I know the relationship with my parents is deep and my mom is the vocal one, so I hear what she thinks. While guidance from the professionals surrounding my parents suggests my dad is further along in the progression of dementia and Alzheimer’s, he makes a big impact when he chooses to voice his opinion with my mom. However, he typically won’t do this in front of anyone. 

This statement reaffirms my belief that being open and honest and including my parents on each step of this journey in a kind way will pay off. While my dad sits through appointments with the retirement community, the doctors, Adult Protective Services …  and while he might not remember, he still seems to recognize they are reaching their boundaries and can provide wise counsel to my mom. Speculated.

Enter Adult Protective Services … Really

VA APSSeveral weeks ago the retirement community scheduled a meeting with my parents. We all sat down and the staff  shared their concerns about some things they have seen in my parent’s behavior. My parents refute each claim and dismiss each fact. At one point, my dad turns to me and asks if I have seen the things they are saying. I tell him “Yes”.

My parents are living in the “independent” section of the retirement community. The staff asks them if  they plan on moving into the “assisted” section or getting some help if they want to stay in the “independent” section. My parents are appalled by this suggestion.

The meeting ends and the director of the retirement community asks me to stay for a brief conversation. They ask if we are going to pursue guardianship.

My siblings and I were just short of filing the papers when we realized that having the legal right won’t make our parents any more agreeable to the changes that will need to be made. We agreed we would try some other options first — pursing this legal option will be our last resort. My parents will understand what is going on and we hope to figure out other ways to achieve the same ends.

My mom in particular seems to remember things that have a negative emotion — the loss of the cars, where the man lived she did not like. I don’t want to spend the rest of my time with her in a defensive crouch.

The director of the community calls me later to confirm they will be calling Adult Protective Services (APS). Bring it. Readied.

I don’t remember living here

In my hope of keeping my parents out of taxi-cabs back to their town house, I planned a field trip. My mom keeps revisiting the topic of getting to the town house to pack up some final items. We have gone through this song and dance now for weeks. However, they are beyond the point of being able to plan and pack. We have moved all those items that used to be the reason they had to return to the town house to their apartment at the retirement community.

I will listen to things my mom says and start a list on the refrigerator. My parents have never added one item to the list I start. The last list consisted of blue Christmas balls so they could finish decorating their tree.

When we leave after our visit, my mom remarks “I don’t remember living here.” I want to scream at first. I have worked to dampen their urge to return to the town house fearing for their safety, and wanted to avoid another lost wallet incident. However, this remark haunts me.

I am unable to comment. She pushes to return for things she can’t name and when we leave, she comments that she doesn’t remember when they used to live there. It simply strikes me that her dementia is marching on. Minded.

My humor is starting to wane and that worries me!

My daughter just turned ten. When I visited my parents a few days before, my mom gave me a sealed envelope she addressed to my daughter.

She just had me help put together a card and check for my nephew, so I was curious what she put in the envelope for my daughter. She initially suggested I buy her a gift.

When my daughter was opening presents, she gets to the envelope my mom had made. For years, my mom would write little poems, which is what I was expecting to fall out.

Instead, the envelope was filled with various pictures from my parent’s life in the past decade. One was a picture of my parents with my daughter, but the others included a picture of the lake at the retirement community when it was under construction and a picture of the empty deck at my parents town house.

My husband and kids laughed — it was an odd collection of pictures in a funny strange way. I felt the angst my mom must have felt in trying to put together the envelope for my daughter.

I feel like I’m getting a little to close to the flame and need to pull back so I can continue to help my parents without burning myself out. I need to find the humor — things promise to only get more difficult.

Whether its funny strange or funny ha-ha, I need to see the humor in our situation. Acknowledged.

That’s just your demented dad talking

On the way back from the grocery store, my parents and I were talking about an event that just happened.  I recounted my version, my mom recounted hers, and my dad just responded that he had no idea what we were talking about. We all giggled. He then responded with “That’s just your demented dad talking.”

I almost hit the brakes. Was my dad reading my blog? Did he see the debate I started when I used the term “demented” to describe my parents?

During this process, my parents have been sitting through the medical discussions with doctors. My dad typically doesn’t say a word while my mom will refute each statement made. My dad admits that he has no memory, and my mom say’s “her brain is bad.” However, when a recommendation is made to consider changes to their lives they refuse to budge.

We recently had a follow-up with the neurologist who shared the results of the MRI tests. Mom, dad and Kay are all sitting in the examination room. We are told that my Dad has Vascular Dementia with signs of Alzheimer’s and my Mom has Vascular Dementia.

While my mom had a stroke (that left no physical traces), she can see many other smaller strokes occurring in her brain. The cognitive testing lead us to believe my mom had some Alzheimer’s but it’s not apparent on the MRI test. My dad has been having many smaller strokes and they also saw signs of Alzheimer’s which was not apparent in his cognitive testing.

My parents were in the room so I didn’t ask questions beyond, what pills do they need to take to minimize the stroke risk and help with their memory. It seems the repetition is starting to sink in. I just hope they will accept help from more than just their children in the coming months as things progress. Prayed.

Music and Dementia

Music soothes the savage beast. For my parents, it engages their minds and brings forth happy memories.

I stopped by to visit my parents and I couldn’t find them at their retirement community. When I went to ask if someone saw them get in a cab, I was told “No, they are at the OctoberFest celebration.”

They had forgotten I was going to come by for a visit and were sitting at a table watching the band play  traditional OctoberFest songs. Growing up, my parents didn’t listen to much music unless they were playing it together on a piano. I still can see my dad’s hand-written notes on the dashboard of both car’s restricting radio use if my mom was in the car.

Half-way through the concert, my mom starts clapping and is singing along with one of the tunes. She then starts to talk about when they lived in Germany. Music is reported to improved the memory of those with dementia. It was a pleasant way to spend a Sunday afternoon.

As I sat watching the band, I wondered what type of band would I be enjoying in my 80’s?  At 48, I still love electronic dance music and thanks to XM, it’s on in my car without fail. Humored.

With dementia, is progress measured by digging a hole or climbing a mountain?

I enjoy setting a goal and working toward something specific. I usually start with the big lofty goal and then break it down into steps that I can strive toward. I’m a little fanatical this way.

When I tried to create a goal around my parents, I was stumped. My heart tells me to deliver loving care with grace and humor — but that doesn’t really define what it is I’m going to achieve if I’m doing this right.

Is my goal to get them to stay in the retirement community full-time? Even if they stay in their independent-living apartment, they are not able to create a new routine to enjoy the activities offered to them.

So, is my goal to have them accept part-time care? My dad in particular has been adamant about not accepting outside help.

Is my goal to keep my parents as independent as possible without exposing them to an elevated level of risk of harm? How do I determine what the level of risk is?

My goals clash with their goals. I worry about them getting harmed and being taken advantage of so having them continue without some type of safety framework, in the form of help by a personal assistant is really my base line.

I finally realized that there is no way for me to define a traditional goal in caring for someone with dementia. Things don’t get better for the individual with a dementia diagnosis. We are all losing in the face of this disease.

I need to lead with my heart, not my head on this one. I need to create an environment that maximizes their days … which will continue to change over the coming years. Enlightened.

That guy is an *#%#!@#

My dad wants us to take his route to the lunch room today. We skip the elevator and he takes us down one flight of stairs. We are walking down a hallway I haven’t been in before.

As we are walking, my mom points to an apartment door and says “That guy is an *#%#!@#.”

I see the last name and I know why my parents don’t like this man. However, I also know that he died two years ago.

What happened to forgive and forget? My husband has chided me a time or two because he thinks sometimes I forgive and forget way to easily. I believe those feelings just weigh you down. Life’s already hard without spending time to carry a grudge around.

I realize that because of the dementia in my parents, some memories just get stuck. From what I learned about the reason my parents didn’t like this man, he was actually doing what my grandfather had given him permission to do.

By the time the letter from my grandfather was found, my parents had disliked this man for so long, they could never let it go. That happened a few years ago.

It makes me realize how long ago the first signs of their dementia were emerging. Even though I recognized it at the time, there was still nothing we could do about it. Reflected.

Who is going to help me when your father isn’t around any more?

I’m worried that I may be getting a little cocky. I have had several visits with my parents that ended pleasantly. I spend time planning before I arrive and have gotten more masterful at managing my visits and avoiding conflicts. I have to say that I needed things to go a little better lately.

Today as we were doing a jigsaw puzzle together, my mom stands up and returns with her burial instructions. She has been showing these to me since I was in college and I know where they keep this information. After putting the papers away, she asks “Who is going to help me when your father isn’t around anymore?”

I stop working on the puzzle, look her in the eye and tell her I will help. My dad is sitting right next to her and keeps his focus on the puzzle. I have to address the elephant in the room now and ask my mom why does she always assume Dad is going first?

My dad looks up at me with a smile on his face and calmly states “The men die two to three years before the women do.”

As frustrating as it is to witness my parents mismanage many daily activities, they really think they are doing just fine. It’s obvious they have had this discussion. They were both very comfortable with it. Surprised.

Please share how you have helped a parent or loved one recognize they need more help than they are willing to accept.