Operation Safety Net: Days 7 & 8

My parents have gone back to their townhouse and refuse to stay now in the retirement community – even on those days they normally stayed there.

My sister came into town and had lunch with my parents and returned them to the retirement community. My brother and sister made plans with my parents to go eat dinner at a new place close by, but by the time they returned after some meetings, my parents had cabbed it back to their townhouse.

They decided to let them be. They are now very difficult to be around.

On a positive note, they are unable to figure out how to get the cars restarted even though we believe they still had some hidden keys. The most important piece of Operation Safety Net was to get them off the road. My brothers accomplished their mission. Relieved.

 

 

 

 

 

 

 

 

 

 

Operation Safety Net: Day 2

For the past year, my siblings and I have faced the reality that my parents’ increasing dementias are problematic, burdensome, troubling and sad. They are unable to handle their lives and unable to recognize their inability to manage safety.

My brothers came to town and have collected the car keys, disabled their cars and moved them into their retirement community full- time. My mother is a very strong-willed individual and after getting past her first few rebuttals, they now recognize the emotional toll this is taking on my parents. They were unprepared for the obvious sense of damaged pride.

Because of the dementia and severe short-term memory loss, my brother made reminder signs and taped them inside their doors with reminders and his phone number. My mom has been very specific that she did not want anyone to see these signs. When he tried to put these same signs in the retirement community she was visibly upset and he moved them to the bedroom.

My mom has created a “cover story” of why they would be spending more time at the retirement community and not in their town home. This is a typical “m.o.” she used with us often. When my dad lost his license, she forgot she told me about the letter from the DMV. She then wrote a letter to each of us saying the reason he lost his license was because my dad “got a terrible speeding ticket.”

She visited the neighbors at the town home community and told them while her sons were in town, they were taking advantage by having them move their things to the retirement community. My brothers recognize my mom is embarrassed and hurt that their way of life is coming to an end. We have been sad to watch as our parents have been unable to find any way to fill their time beyond driving between their two homes. We knew this day was coming and we thought they did too.

However, as my brothers progress through the transition, it’s obvious my parents never thought this day would really come. They have no recollection or recognition of the dozens of discussions with doctors as well as us children about their life becoming very unsafe.

My mom has told us for more than 30 years that she would never do to us what her mother did to her. My grandmother came to live with us and my mom then moved her to a retirement community. That progression of events feels like a piece a cake to me now.

My parents set milestones for moving into the retirement community full time and each one came and went. They didn’t remember how many times they were getting lost, or how often 911 was called or the number of other issues they faced. They were ready to ignore the loss of their licenses and continue their lifestyle unchanged to keep this sense – and public appearance — of independence.

It’s clear my mom is truly stunned and wounded. Granted, my parents did a magnificent job at holding each other up and maintaining their independent life for several years. We noticed a significant difference in my mom’s ability to manage after she had her stroke three years ago. My mom would admit to memory issues and problems both she and my dad were having, but would quickly recant or deny them if you brought them up. My dad is just silent and compliant now.

We believed my parents would be relieved when we forced this action. The last year has been filled with many phone calls and letters from my mother that felt like calls for help to all of us. However, we think it’s just us children who are finally relieved. Tempered.

T Minus 60: Operation Safety Net

My brothers arrive in town and we talk through how they are going to deliver the news to my parents.  We expected both parents have received their license revocation notices, but unfortunately, we only have confirmation that my dad lost his license.

My mom just stopped driving on her own within the past year. My dad was encouraging her to get behind the wheel but she has resisted doing more than driving around the parking lot. This means my dad is driving without a license and uninsured.

We are sitting around the dining room table talking through a variety of issues. The goal of this trip is to implement the changes my parents have failed to make to ensure their safety and well-being. My brothers are here to help my parents move to the retirement community and retire their cars.

Over the past year, we have gone with my parents to see a psychologist and two internists to review their mental and physical health. All three made the same recommendations to simplify their lives by living in one place and eliminating driving.

My parents kept resisting these recommendations and have forced us to act in their best interest. They believed that they had set up their lives so we would not have to do to them what they had to do to their parents. Unfortunately, we were unable to convince them to follow through on their plans. It has taken a doctor’s recommendation to the DMV to revoke the driving licenses to give us the foundation for implementing these changes for them. Otherwise, they would continue to drive which further illustrates to us their diminished cognitive states.

We start running through the checklist and our conversation gets so lively that my daughter walks in and asks us to stop fighting. I turn to her and tell her we are not fighting, just having a passionate discussion. We were raised with family dinners where we would discuss and debate many topics. Thankfully, our parents gave us the tools to discuss and collaborate to best serve them.

When my brothers leave to drive to my parents’ house, we were all in agreement. We can have these discussions because we trust and love each other very much. I hope she and my son develop the same relationship.

We are very lucky.  I’m thankful my brothers are here to do this and we have not allowed this to come between us. United.

It’s Time to Take the Keys

My parents have both been diagnosed with dementia to varying degrees, and the medical team submitted a form to the DMV to rescind their licenses. While my mom has moderate to severe dementia, my dad (with a moderate dementia diagnosis) has been the driver. He is the only one whose license was revoked. We don’t know what happened to the request for my mom.

For several months we have discussed taking this step, but have disagreed as siblings. After three medical recommendations to my parents to stop driving, having my dad’s license revoked and he continues to drive, we could easily all agree it was time to act.

My mom has not really driven for several years. She would sometimes drive a few blocks to her bridge game, but when that moved, she stopped going. My dad has been encouraging her to drive since she still has the “good” license, but my mom is uncomfortable driving so my dad continues to drive and they have made a story about her leg getting caught in the door if they get stopped.

The small things we have done to help have been quickly undone. We have gotten them to give up the keys only to recant that choice hours later. We have been sensitive to let them have control over the choices. Whether they are unwilling or unable to accept the recommendations and help we don’t know, but we have decided now is the time to take the keys and hide the cars.

I really don’t like having to force this and scared of the shrift it’s going to cause for all of us emotionally. The fact that my dad is driving unlicensed pushed us to enforce this change. We want to take the cars before something happens and someone gets hurts and/or my parents find themselves in legal and financial trouble. My brothers are heading to town to get the keys and help them make this transition. We are expecting a fight.

Any suggestions welcome on how to have that conversation and make it stick without too much blood on the plow? Inquired.

Here are some links to what happened next:

Dad is Notified is License Was Suspended July 2, 2012

It’s Time to Take the Car Keys July 6, 2012

Opeation Safety Net July 8, 2012

 

Wait a Moment, it Might be the Police Calling

I know what some of you are thinking – just tell your parents what to do!  We’ve tried nice, firm, collaborative, aggressive … but nothing has worked.  When I get suggestions on what has worked for others, it always seems to be a scenario with only one cognitively challenged parent. I have yet to find someone dealing with two parents who have dementia. We have tried many of the suggested options only to have my parents successfully undo changes.  Maybe I should have considered gang intervention training given they have become their own band of knaves as a result of their cognitive changes.

We are to the point where they have pushed us out and they are trying to manage on their own. My mom will call and tell me what’s going on. Some days I feel like I’m talking to a troubled teen friend who knows she’s making bad choices but feels the need to share her exploits and is a little too proud that she’s getting away with her behavior.

The care manager told me earlier that they are trying to determine the status of the paperwork that was submitted to revoke my mom’s license.  She also told me they will be calling the military police when my parents leave. I don’t hear anything else before I walk into a business meeting with my phone on vibrate.

The phone rings and it’s a number I don’t recognize.  I’m chatting with colleague who reads my blog and I have awkwardly excuse myself with “wait a moment, it might be the police calling for me to come pick up my parents. “

My colleague laughs. I’m glad since that was exactly where my head was on this. I feel like I’m now the parent of two troubled teens – however it’s my parents who are being naughty. Sandwiched.

Step One: Spend the Time to Explain


My sister and I were very impressed by the doctor who sat my parents down and spent over an hour with them trying to explain why she is so concerned for their safety.

Our visit begins with my mom, dad and sister huddled into one exam room. I’m not really sure what is going to happen. While I was parking the car, my sister and mom went to the appointment. My dad waited for me at the hospital entrance and we arrived late. When we arrive, the care manager is briefing my sister. We haven’t had a chance to talk so this is really the beginning of the appointment for me and I have no idea what’s going to happen.

The medical technician comes in and starts doing a general assessment of my mom. Do you have any medical conditions? My mother responds, “No. I haven’t even had a cold in more than 20 years.” I swore I would keep my mouth shut but wonder if this guy really wants her medical history. At one point my sister shares that my mom had a stroke. My mom starts to derail the assessment by wondering what the symptoms of a stroke would be. My dad quickly jumps in and asks my mom just to answer the questions.

When we get to my dad, we have a similar issue. My dad reports no issues, yet he broke a hip two years ago and has a pin in his leg, and also takes a host of medicine for some other minor issues. I’m still wondering if this is even important. They have access to all their medical records.

It takes the medical technician an extraordinary amount of time to get through the questions. At one point, I had to turn my head because I started to laugh. I thought I might be in an Abbott & Costello movie.

The technician leaves. We can hear him talking in the hallway and within a few minutes the doctor arrives. She’s got a calm demeanor and a warm smile.

She introduces herself to my parents and reminds them how she met them. She starts by sharing that she is a woman of faith. She tells the story of meeting them in the Emergency Room at a hospital across town on a Thursday. They were lost and confused. The following day, at a different hospital, my parents show up again in the ward where she was assigned. Again they were confused. She couldn’t believe that they showed up in her care two days in a row in two different hospitals. She tells them she is very concerned for their safety and is going to recommend that the DMV rescind their licenses.

My mom applies a variety of methods to divert the conversation.

“All my children aren’t here; I won’t have this discussion until all of my children are here.” The doctor tells her, “Okay, let’s meet on Monday and we can set up a call to get them on the phone.”

“What if there is an emergency?” “There is a service, you know the button device you can wear, that gives you the ability to call for help from anywhere” replies the doctor.

“It should be our decision, not our children’s, that if we drive or not.” The doctor tells her that we have nothing to do with this. This is her recommendation.

The care manager has been taking notes to summarize what was discussed so my parents can sign it. At one point, the doctor reads the summary and explains each point. My dad signs the form. My mom refuses to sign and the arguments begin anew.

The doctor reminds her that they have the ability to decide how they want to live and how they will manage to do the things they want without driving. She tells them she’s looking forward to hearing their plans when they meet again in two weeks.

We finished the meeting. My dad hands my sister his car keys and starts to wonder where he parked his car. We remind them I drove. The ride home is quiet, but thankfully short. I am not sure what we will find when tomorrow comes. Witnessed.

A Crisis Can Strengthen or Destroy Family Bonds


You seem to only hear the horror stories, the ones where something bad happens and the family fractures.

My siblings and I continue to work on letting our concern over our parents bring us closer rather than split us apart. It is not without bruised egos, hurt feelings and harsh words sometimes.

We have a 10-year span in our ages but as we all age, the gap gets smaller and smaller – however, I am pleased to boast that I will always be the youngest.

My sister is the oldest. She was off to college before I really have any memories of her in my childhood.  She is the kind heart that bought me a ticket and flew me to California for spring break in college when I just didn’t want to go to Florida where all my girlfriends were itching to go. Her open and sympathetic heart has helped steer our journey with our parents. She has already cared for her husband’s mother who had dementia and lived in their home for the last few years of her life.

My older brother was the one who saved me from the younger brother growing up. He was always the outgoing “hugger” that was the black sheep until the rest of us figured out that sharing your feelings outwardly is important to those around you. We still are amazed we were raised in the same family sometimes. He’s the only other sibling with two kids like me, so we find we have much in common now … I hope my kids turn out as wonderful as his and my sister-in-law’s kids have grown.

My younger brother and I fought like cats and dogs until I went away to college. We became great friends and spent much of our 20s together. We are likely to guess any secrets between us before one is formed and can argue passionately from varied viewpoints but still end up appreciating the other person’s viewpoint (however his is usually the CRAZY one in every debate).

The real test of love is when you face a problem. Not only do you get to better understand someone’s viewpoint on something you would typically never discuss, your trust of each other is challenged.

Several years ago, at a business meeting no less, one woman told us that a wildly successful partnership she formed with another firm was based on the concept of “giving each other the A.” You need to give your partners the “Assumption” that they are in line with what you discussed. Some days, it doesn’t feel that way, and it’s okay to call them and ask them to clarify.

It’s a tall order, but incredibly constructive. Assume the best of your family and they will deliver. Appreciated.

When the Caregiver Needs a Respite

Last week, Ann Ahnemouse, a fellow blogger dealing with a loved one with dementia, wrote a blog titled “Respite.”   Just the idea of taking a break from my parents has been dancing in my head now for days.

While my brother was in town and trying to really understand what was going on with my parents, we would continuously discuss what was happening. Having him in their space 24/7 and hearing what’s going on has been shocking, sad and tumultuous over the past few days.

I feel like I’ve been doing okay with what’s going on, but the past few days have been bruising. My parents are getting themselves into trouble and are blaming me for the issues that are occurring. I am the local one, so they must assume because I know what’s been happening that I’ve been causing their problems.

My mom forgets that she calls me and tells me much of what has happened. She’s usually rattled and just needs to tell someone. I’m never quite sure what is real and what is confabulated, but it’s not the ER or police calling so they made it through the event. However, she never remembers she told me so assumes I’m talking to the people around them.

I will admit to trying! Most know me and will share the story with me when they see me in person.

I’m getting angrier, and when I get mad, I disappear. It’s a pattern I have perfected over the past 4 decades. I need to be there for my parents, but I need to disappear for a few days to regain my strength.

When they see me daily, they don’t remember. The silver lining is that when they don’t see me for days, they won’t remember that either. Blistered.

I am not a great friend, yet.

Today I had a follow-up with the social worker from the hospital. She wanted me to tell her about my parents growing up and what they were like.

In short, my dad was the wisecracker and my mom was the disciplinarian. My dad had a remarkable military career and retired after he reached the position he strived for as a Lieutenant General. We moved around and he spent the last decade of his military career in the metro DC area. He then went on to head up several civilian firms before settling into consulting over a decade ago.

My mom was always the crafty one. She was a masters level bridge player in her early forties, and by the time I was in high school started and was running many local bridge games – that was in between the antiques business she dabbled in. At one point, she had 3 different storefronts at local antique markets.

While we always had familiar families that circulated in and out of our lives as we moved around and my parents had an active social schedule, I don’t recall them ever having really close friends until I was in high school. They met a couple through my dad’s job, but he wasn’t military – he was civilian. I think for the first time they had a couple who they shared interests with and could be very open with. Within the military community they were always very private.

Both Bill and Dottie died unexpectedly. Bill in 1997 and Dottie in 2002. With them, died my parents’ best and only great friends. I’m not sure why the story of my parents took me here, but I totally burst into tears in retelling this story. Maybe because I know we would be in a different place if they were both still here.

My parents could hide their dementia from acquaintances, but they wouldn’t have been able to with this couple. Had their best friends still been here, they would have talked to them about this and it wouldn’t have been us kids telling them something is wrong.

I have a lot of acquaintances and good friends, but the only person I would call when I’m upset is my husband.  I have not developed or nurtured friends that I would call to share my daily life. I’m trying but I know I am not a great friend, yet. The kids will leave, the jobs will change, but great friends are one of things we need to make sure my husband and I won’t turn into my parents. Pledged.

We are ready to move into the retirement community.

On a recent visit with my parents, my daughter performed her duties well as wingman and buffer. I’m still a little wary of what to expect on my visits and it turned out to be a pleasant visit. There was no mention of the letter they sent me, or any of the letters they must have gotten from my siblings.

I’m surprised when my husband tells me later that my mom called. It was in the evening but he reports she was very clear and knew she didn’t see him this morning when we visited. She even asked how he was doing. She told him she wanted me to come over to talk about moving full-time to the retirement community – TONIGHT. He told her I was at a tennis match, and then would be picking up our son and home late for dinner – he knew to nip this request in the bud. I’ve chased down this promise too many times before.

When I call them back, I work to confirm when I can stop by. Given that neither of them has any short-term memory, the likelihood that this conversation will be remembered is in the single-digit territory.

I’d love to say that this is a notable step toward the safety zone, but I won’t believe it until we move them into the retirement community full-time or accept someone who can help them (on a daily basis) navigate their day. Guarded.

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.