Yesterday, my brothers and I visited with the retirement community. We need help on navigating the next steps.
The community relations director shared some additional insights on how our parents are doing. She shared that my parents are having a “dignity issue” — as in they are not aging with the grace they expected and can’t recognize it now.
As their children, we want to provide them with the right environment to give them meaning and purpose to their lives, keep them safe and enjoy each day.
Kate Swaffer posted this video and before watching, I suggest you go get tissues.
What is that? This short films shows a son and his father and provides great insight into the nature of the role reversal as our parents progress through dementia.
Personally, I’m struggling to determine how I feel about the choices we have in helping my parents. I felt this video helps one understand how challenging it can be to care for a parent and reminds us how important it is that we provide them with the same patience and love they gave to us growing up.
The community around my parents — friends, neighbors, the retirement community — is telling us they need more help. We need to provide a more complete safety net for them … now.
What is the right environment for them? How can we enhance each day they are on this planet? How can we surround them with a loving, nurturing environment as their dementia progresses?
I’m not as ready as I thought I would be when the day came to make these choices. Puddled.
I worked in many other firms prior to launching my business and one of the nuggets I learned during my development was that change is a process. We need time to adapt to the changes happening around us and we need to give ourselves the space to practice, practice, practice.
I’ve been collecting my past blogs in a book format and as I go back and re-read some of my blogs, realize that many lessons I learn take time to stick.
Some of the key themes I struggle with the most seem to be:
I’m not perfect, but I will continue to try to my best to help them, even when they don’t seem to want to help themselves. I understand that they may not know what is wrong or where to start. Accepted.
What are some of the things you struggle to adapt to in helping your loved ones?
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.
My parents are not my parents. The man and woman who raised me and who would join my family weekly for meals are not the people who carry around my parent’s ID cards now. It was a really hard thing for me to face as my parents changed. Before I visit my parents now, I remind myself of this fact.
I can no longer have a meaningful conversation with my parents. They don’t remember what is going on in my life, the ages or interests of my children or any of the life events we share with them when we visit.
I still cry when I think about the loss of my parents. Some days, I get a glimpse of the people I remember my parents to be. A witty remark zips off my mother’s tongue or my father will trot like he used to do when plain walking just got boring – I still savor those moments
When I greet my parents they still get hugs. I honor them with the respect they deserve, but I learned to not torture myself but pretending they are my parents and allowing the behavior and language to destroy my memory of the two wonderful people who raised me.
Some days, it’s still a battle, but it’s getting easier to manage. Coping.
If you are in my shoes, how are you dealing with your visits?
My brother and I visited my parents for lunch. Both parents are scheduled to see a Neurologist as the next step toward a diagnosis.
Dementia is a pretty broad term. We would prefer to have a little more clarity around each parent’s dementia. One brother and sister are coming into town to be on this appointment with my parents.
My parents were angry with the brother who is coming into town for taking the cars. He is getting blamed, although we all agreed and supported this decision. I thought it would be nice to just visit and have lunch together so we could move beyond this potential confrontation before he arrives to take them to the doctor.
We arrive for lunch and my parents have already eaten. I called this morning at 9:15 AM and my dad said he was looking forward to lunch with us today.
After lunch we are just hanging out in my parents apartment and talking about how my other brother is visiting a variety of Asian countries now. We mention how the notes we receive sound like they are visiting 3rd world countries. My mom pipes up and says she is here on the 5th world*.
My brother stops and turns to ask my mom “What is a 5th world?” and my mom swiftly replies, “It’s 2 more than the 3rd world.”
She’s still clever even if she doesn’t make much sense some days. Giggled.
* Turns out there is a Fifth World prophecy from the Hopi that marks the beginning of a better way of life here on Earth. I hope for my mom’s sake, they were right.
Tomorrow is my mom’s 81st birthday. I’ve chewed through a few options and settled on hosting them at our house and feeding her dishes from her own cookbook. That is if they are where they say they would be when I call tomorrow.
I was going to do the traditional brunch we do at the retirement home, but that seems ordinary. Then I considered taking her to a local brunch with a 5 foot chocolate fountain – but I know that new places are difficult for her to absorb.
So, I have prepared her classic brunch favorites and hope they will eat at our home tomorrow.
One year I gave my mom white roses and she commented on them so much, I’ve made this a birthday tradition. This year, as I was cutting the roses, I noticed the name of this variety is “Vendeta”.
According to Dictionary.com, “Vendetta” is any prolonged and bitter feud, rivalry, contention.
On top of all the new issues dementia of a parent brings, you have to mix in the parent-child dynamics, mix in the sibling-sibling conflicts, and you realize that 90 percent of the battle has nothing to do with the dementia, but with loss, anger, resentment, pride. This list goes on and on.
The best present my siblings and I are giving to my mom is our will to stay united. I’m the latest to crumble at the enormity of my parents needs and my brother and sister patiently listen and step in when they know I’m on overload. In speaking with many other children, we are a rarity.
If you think your neighbors are being neglected or abused by their children … Call Adult Protective Services.
After some events over the past few days, I’m aggravated by the random involvement of my parent’s neighbors. Please HELP us help our parents!
If you hear your neighbors telling you that their children have taken their cars, are forcing them into a retirement community, are stealing their money, don’t try to fix this on your own. Call Adult Protective Services (APS). APS investigates reports of abuse, neglect, and exploitation of adults 60 years of age or older and incapacitated adults age 18 or older.
If what your neighbor is telling you is true, they need an advocate. Instead of trying to fix the one issue, tell them that you will help them by getting someone involved who can provide them with more permanent assistance to address any past or upcoming issues.
You did not help my parents when you helped them re-key their car, or break into their own home.
The Situation You Aren’t Aware Of: Both my parents had their licenses revoked by the DMV, told us about it, and continued to drive. We learned that their insurance company dropped them after getting the revocation notice. My brothers flew into town, discussed the issue with my parents who initially handed over their car keys. They visited with them and helped them adjust for the three days following this action. A second brother stayed on a week to help my parents.
What A Neighbor Did: My parents neighbor connected my dad with someone to “rewire” the car. This cost over $800 and then created additional issues with the car’s electrical system. We could no longer use the original keys and then had to tow the car to a shop to “refix” the car. Add another $500 to the tab.
The Possible Consequences of your Help: My parents could have killed someone else or themselves when they got in the car to drive. Many days, they don’t remember they no longer have a valid driver’s license or any insurance.
Please know that several neighbors have either my phone number or that of my brother. We reached out to ask for their help should they be concerned for my parents safety or well-being.
I’m sure you thought you were helping your kind old neighbors. Please next time just call APS. Frustrated.
I get a call from my mom today at 2 PM. She says she found a note that we had a reservation for brunch at noon – did I forget?
Thankfully I was on the tennis court and missed the call. However, this morning with my parents was rough and I’m alarmed that she forgot that we came over, picked them up and took them to brunch.
At brunch this morning, both my parents were unusually mean-spirited and by the end of brunch, everyone was bickering. I don’t think I can have my children around my parents any longer. My mom was using profanities and throughout the meal they made fun of the people around our table. I couldn’t squelch it.
I reminded my parents they raised me practicing the mantra that if “you don’t have anything nice to say, don’t say it.”
My dad disagrees with me and says he thinks it’s okay if they don’t hear you say it.
Today at brunch, I really missed my parents and resented the people who have taken their place. Disheartened.
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.
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.
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.