2017… yeah, that was fun… Sure, the shit hit the fan all over the world, especially in the US. For me, it was one of the hardest years of my life, tackling my mom’s dementia.
A year after my father passed from cancer, I saw initial signs of dementia in my mom, but it was still a journey to fully accept it before I was able to start fighting to get her help.
When I first tried looking into resources for how to handle this, and what others have gone through, I found very little that was useful for me or that I could relate to. Everyone points to the Alzheimer’s Association website, but it was not informative in the way I needed in the beginning in terms of finding stories I could relate to. My mom is on the younger end for this disease, she has fought me every step of the way in getting her help, I was living in a different state, I’m an only child, and I decided to bring her to me which seemed rare for a single woman to do.
Thus, here I am sharing my story because I’m not the only person out there going through this type of loss, no matter your demographics or situation. I want to help give insights into what I’ve learned, and what I went through. To provide additional resource and help others not feel alone. The alone part is crucial. There is no right way. There is the way you get through it. I am not the hero, villain or victim in this story. I am an ongoing survivor and biased narrator.
This very long post shares what went on with diagnosing the disease, getting help and moving my mom. I’ve broken out 2 additional much smaller posts listing tips to keep in mind when handling caregiving and key take-aways from this experience.
Where we are now, my mom lives within a 15 minute drive of me in a memory care facility. As of last year, the diagnosis was moderate Alzheimers. Part of her disease is that she is unable to understand that she has dementia, and there is the common significant paranoia and anxiety. As of now, she believes my father is still alive and we have regular conversations about him and her looking forward to seeing him again. She also thinks her mother (died 2009) and father (died when she was 23) are alive and talks about wanting to go home to see them. She only eats chocolate (especially cookies) and drinks Ensure, and I gotta admit I would do the same if I was her. She hates the doctor with a passion and throws tantrums when we go anywhere near anything that is like a doctor’s office. She still knows me and loves me. She loves to dance, sing, color and chat with anyone who is friendly with her. She especially loves children and dogs. She also loves giving away her stuffed animals and chocolate to anyone she thinks needs love and kindness (especially people who are homeless). She constantly tries to help the people who are also living in the facility where she is whether it’s getting them a blanket or food or just talking. She wants to love people and have fun.
Dementia is one of the most fucked up illnesses, takes many forms and can take a long time to play out while stealing away the one you care about. I hate this fucking disease. I hate it so much I can’t stand it. I do not wish this on anyone and if it happens or is happening to you, I feel very deeply for you.
I took a long time to process and come to terms with the illness so in a way it helped that it took several years to manifest. Yet the slow moving death is brutal to experience because you can’t escape. I mean you can, you can ignore the person, but if you care about them, then its hard to escape it.
What made it harder as I watched her disappeared for several years is that no one believed me. It was very isolating and lonely for a while.
FIRST SIGNS | Christmas 2012
My mom visited me in San Francisco and that whole week she seemed a bit lost, anxious and confused compared to all the other visits before. We had this moment where she asked me something and within less than a minute, she asked again as if she had never asked it before. This wasn’t a repeat like people will do normally, it was a clear ask like she didn’t realize it had come out of her mouth, and she said it with this urgency that was on the edge of fear. I don’t remember what she asked about, but I do remember feeling disturbed.
Over the next few months, I noticed more signs of confusion that were uncommon from our regular phone calls, and I asked her to get checked by a doctor. Unfortunately, one of my family members convinced her not to listen to me or get checked. I don’t know whether the doctor could have slowed the progression, but this is when my mom started distrusting me and hiding things from me.
I spent 2013 and 2014 doubting what I was seeing and struggling emotionally with how to process it.
When I did let myself believe it, I was at a loss as to how to fully handle it. Many times I wanted to ignore and believe it wasn’t happening. It was easier. Living in another state helped me for a while to shut it out. At times I resented that I was becoming more responsible for someone and a disease I had no control over. We had a period where if I ever voiced any concerns she would act out almost to spite me or dismiss me like I was imagining things. Yet, I could see she was becoming more vulnerable, and I took the steps I had control over to try to protect her as best I could.
After the family member spoke up against me, I was reluctant to speak to others in the family about my concerns. I also didn’t share these concerns too widely while she was capable enough and lived alone, as a way to protect her from those who would take advantage. I was a little paranoid (and rightly so) that the various mechanisms that target advertising and collect information on search behaviors and other digital media would clue into my mom’s illness and try to exploit her through manipulative advertising. Thus, I was careful about my research early on.
By Christmas of 2014, I no longer doubted what I was seeing but felt at a loss of how to help. There were signs like rotting food continually piling up in the fridge no matter how many times I cleaned it out, many things getting lost in the house, paperwork piling up (missed bills), forgetting plans or events or even days, and there was this increasing confusion and anxiety that was not like her.
The medical world made what is already a nightmare even harder. The system is broken, and with the aging baby boomers alone, we are faced with a crisis that I’m seeing the beginning signs of. The medical professionals have been through this with so many patients, there is no excuse why it can’t be made easier for people.
MILD COGNITIVE IMPAIRMENT | April — June 2015
After Christmas of 2014, I received much needed advice from a friend that convinced me to setup an appointment with the Baylor College of Medicine Memory Clinic, which was rated the best in the nation and happened to be in Houston, where my mom lived. The challenge was I couldn’t get an appointment until Feb. 2016 (which ended up getting rescheduled due to conflicts and change in doctors to Feb. 2017).
I wasn’t going to wait, I was determined to get her assessed sooner to help slow down the progression and get an expert opinion to hopefully help get others in her life on board that there was an issue and she needed help. I worked with her favorite doctor to get a neurologist recommendation in order to get her to agree to go see someone, which we did in April of 2015.
She was so anxious the day before and that whole morning (especially in the waiting room), and we had many arguments where she in essence thought I was crazy and being a horrible person to her. Alternatively, she was very pleasant with the doctor, and he had a good manner with her too. He conducted a standard mental status test in the office and gave an Aricept prescription that she could start immediately while she went through the rest of her tests for diagnosis. She took it once and said she had horrible nausea and other adverse reactions. She vehemently refused to take it again no matter what I said.
The doctor ordered a neuropsychological test, blood work and MRI which took a couple months to get scheduled, and to get the results back. The neuropsychological test was a half day of questions and a follow up call with me about what I was seeing. My mom complained for over a year after about how abusive and unfair the test was and that she would never do that again. It was clear she was looking for a way to discount the results. In June of 2015, the diagnosis came back as Mild Cognitive Impairment.
MCI can be normal for someone aging or a precursor to something worse. The doctor said they needed to monitor the progression including assessing her driving on a regular basis. The potential to lose her driving privileges upset my mom so much that for a couple years after she talked about how much she hated that doctor even when she couldn’t remember his name or exactly who he was. Now she hates doctors in general.
As for the diagnosis, she took it as confirmation that this was normal for getting older. I shared the results with her siblings and learned later they also dismissed it as normal, and that there were no issues to address.
For most of 2015, I spent a lot of time desperately trying to get my mom to understand what was happening and found myself in insane circular conversations. I broke down a few times from it. I would have her telling me that I didn’t need to take care of her and she was fine, but in the same breath, she would show how she had forgotten another family member’s name, what day it was or what she was just talking about. There was a lot of things we said to each other during that year that neither of us are proud of. In some of these conversations, I made it clear to her that if it came down to it, I would move her to me, possibly a senior living facility. She would respond that was fine, but this was many years down the road if ever. I realized no matter what I said or how I said it that she couldn’t comprehend what was happening, or refused to believe it. I mean how do you make someone believe they have mental issues if they can’t understand it and/or if they are in complete denial.
HIATUS | Dec 2015— Nov 2016
By the end of the year, I took my mom for a follow up with the neurologist and to meet with a potential caregiver to help her around the house. The neurologist said she appeared fine, and when I tried to talk with him alone about my concerns, he talked to me like I was the problem. He never offered any outside resource recommendations for help. We also met with her regular doctor, and she did not see any problems. It was hard for them to see the issues with only a few minutes interaction once a year.
There was a moment when I was alone with my mom during the doctor visits when she spat such vitriol, which I had never experienced from her that it completely flattened me emotionally. She made it clear she would never see the neurologist again and would not allow any strangers in her home. I decided to stop fighting to get her care. I couldn’t get her to take the medication to slow the progression, and her friends, family and doctors did not think anything was wrong (or didn’t want to). I was tired of fighting, and if anything was going to change then I needed her to be less capable and/or for others to be on board that this was a problem. I also knew that her independence was close to an end, and I wanted her to enjoy what time she had left versus fighting me the whole time. So I didn’t visit Houston for most of 2016 to give us both space to recover and enjoy life before it changed.
I deliberately disappeared to reset her from being angry at me to missing me. I wanted to be with her, but I could tell she was so set against me that if I didn’t break away then she wasn’t going to listen to me. It was crucial to get her to hear me again, especially when it was time to start taking over.
In Nov 2016, I got a call from one of her friends to enlighten me about her illness. I definitely had a “welcome to the party” moment. All her close friends had come to understand the dementia was really happening, and they were trying to help her however they could, like take her to dinner or help her with errands. Yes, it was sad that the progression had gotten to the point that others saw it, and yet it was helpful I wasn’t alone in knowing it was happening.
I was already thinking through and sorting out what next steps would look like, and I knew we needed to get through the Feb. 2017 Baylor Memory Clinic appointment to get a second and updated opinion that would empower me to get her more help. The second opinion can be very helpful, especially if you end up in a situation where you need to legally fight to get your charge declared incapacitated. Thanks to another friend going through something similar around that time, I started seriously assessing moving her into a senior living facility and how to make that happen after the clinic appointments. I also came up with an approach to get her to accept caregivers in her home to cover the gap until I could get her moved.
MODERATE ALZHEIMER | Feb. — March 2017
There were several appointments at the Baylor Memory Clinic spread out between Feb. and March. I flew back the night before the first doctor’s visit, and I didn’t tell her to save us both the pain of her anxiety and from her refusing to go. She didn’t get pissed until she saw the hospital sign and then spent the time it took to park and sign-in expressing her anger. Whenever we were around others, she would pull herself together, and I kept moving the whole time. I was going into the clinic with or without her, and thankfully, she followed.
I managed to get a brief conversation with the doctor to express the challenge I was up against, and how there were things I could not talk about in front of my mom. For example, I wasn’t telling her about my plans to move her because I didn’t want to risk her becoming so upset that she would refuse to finish out the appointments. I knew we needed to get the diagnosis before I figured out how to broach the subject with her. I needed confirmation from the doctor that she could help us with stopping my mom’s driving as well as getting the paperwork done to help with the move; otherwise, I didn’t see the need to keep moving forward with the appointments. The doctor was guarded and not very empathetic but indicated that she would help where she could.
Both neurologists helped me understand that they were good at the diagnosis part, but that doesn’t mean they know how to handle the caregivers (especially dealing with hostile dementia patients). And that is a gap that needs to be filled. There was so much advice and counseling I needed, and I found very little of it with them. I assumed they’d handled this before, but it’s one thing to say, “there’s a problem”, it’s another to say, “here is how you handle it”.
This doctor was great at engaging my mom and making her feel safe. She did a mental status test, asking questions and checking reflexes, and explained what was going on in a clear way. She got my mom to feel good about doing the remaining appointments which was helpful.
I flew home because I was interviewing for jobs at the time (another story and yes, another level of stress) and setup/hired a caregiver to take her to the other 2 testing appointments. Thankfully, my mom completed the neuropsychological test (which she did try to get out of) before one of her friends decided to tell her I was going to sell everything out from under her and force her in a senior living facility. Yes, that happened. In many ways, it was true, depending on how you look at it.
History had already shown me I needed to be careful what I told her and when. During that Feb. visit, I had entrusted a couple of her friends with what I was considering about her care because they had all started shouldering the load to keep her safe. That incident helped me become even more cautious with what I shared (especially with sensitive subjects) because you don’t know how people (even ones you trust) will react.
My mom freaked out (her heightened anxiety from the dementia didn’t help), and we had one of our worst fights ever, where she told me I was no longer her daughter. She hung up on me and stopped taking my calls or speaking to me for several weeks. At the time, I was in back to back interviews and there was nothing I could do short of flying back to see her but no guarantees I could do anything even if I did. One other concern I had in all this was I shared control of her finances and I had a DPOA (durable power of attorney), but she could have easily nullified it and cut off access to her finances which would have made what we went through exponentially harder.
My mom’s reaction was to call her siblings, which finally got them engaged. That’s when the oldest called me to find out what was going on and take control of the situation. We had a few heated conversations where I asked where they were in all of this (especially considering how they all lived near her), and I told them that anyone else is welcome to take over. That if I’m the one who ends up carrying this responsibility then we are doing it my way, which was about making sure my mom and I both survived her illness. They spent time with her, talked with her friends and made sure she went to her 3rd appointment since she was refusing to let the caregivers I hired in the house. Bottom line: we got all the tests done, and the family finally started to see the confusion as well as her heightened anxiety and anger.
I flew in again right before the diagnosis appointment in late March 2017. I didn’t want to give my mom much time to take her anxiety out on me. She was at least talking with me at this point and still got in her barbs as we drove to the hospital. This time her oldest sibling came to the appointment to hear the moderate Alzheimers diagnosis. It was clear my mom had progressed based on the neuropsychological and MRI test comparisons from 2015. The brain scans actually showed her brain shrinking. The doctor was very kind, caring and factual in the way she delivered the news directly to my mom. My mom smiled and nodded in a way I’ve seen with her before where she looks like she was hearing what was said by being pleasant but not believing it.
After the neurologist, they had us meet with a family therapist. She was there to counsel us on what was next. Reality is: a therapist should be setup with family from the start of all the appointments. You need counseling on how to get through this as early as possible (especially if the patient is hostile). Granted, many places don’t provide a therapist. Both doctors made it clear my mom should stop driving and not live alone, but it was on us to take the actions to make those changes and really it was clear it was on me. They shared that they knew these changes may take time, but we should work towards them sooner rather than later.
What I had really wanted from these doctor’s offices was something almost like an orientation or a pamphlet that says “welcome to caregiving, this is going to be hard and here is how you get through it”. At the very least, the doctor needs to set up visits so its easy for them to talk to you separately because that was always a challenge for me to get time with them alone. What they did do is leave me with the standing message: I should checkout the Alzheimer’s Association website for more information.
This disease is typically a long haul disease. People check out ( deliberate or not), deny, disappear and/or work against you because the responsibility is stupidly ginormous and hard to fully process. People also show up in unexpected ways, and provide much needed support. Look for the help that makes you stronger and minimize interactions that don’t.
As you have seen in this post already there was a lot of denial around my mother’s illness for several years. I denied it, she may be denying it this whole time, and many in her life have too. It’s easier to pretend there isn’t a problem whether you don’t want to get stuck dealing with it or its too emotionally scaring to believe.
When my dad was diagnosed with cancer, everyone came out of the woodwork offering to help. When my mom was diagnosed with MCI, people didn’t reach out. Some didn’t believe or didn’t want to get involved. This is a disease that still carries a stigma because it is so hard to handle due to how the disease plays out and how much it changes someone you’ve known.
For a year after the MCI diagnosis was shared, almost no one from the family visited my mom. They didn’t offer to drive her to any events even when she got lost driving to someone’s home for a party. Right after the MCI diagnosis, one of my mom’s closest friends who she helped for many years, stopped hanging out with her, and they have barely spoken since. This really hurt my mom and she blamed for a while. Now she doesn’t remember that friend.
UNDERMINE | FIGHT YOU | WORK AGAINST YOU
Yes, the example of her friend getting in the way during the testing is a great example of having someone work against you. What’s hard is how often it happens even with the best intentions.
I remember this horrible call with someone from her neighborhood where I needed information for the estate sale I was setting up, and she went on to lecture me about how moving someone with dementia out of their home is especially cruel.
BREAKDOWN | DEMAND HELP | TOO INVOLVED
There were so many calls and texts from friends and family with these expectations that I take certain actions, weighing in on what was happening and sharing how they were feeling about the situation. One of her friends who kept messaging everyone about how they needed to take her diabetes seriously and how hard it was for them to see what was happening to my mom. This went on despite me telling everyone I do not have the bandwidth to manage their pain. Between my mother’s emotions, my emotions and all the work to take care of her and trying to live my life, I had enough to deal with.
SHOW UP IN UNEXPECTED WAYS
People can be there for you in ways you didn’t know you needed and it’s important to understand as best as you can how they are able to show up and make you stronger. When my mom’s siblings initially flew to her rescue, one of my cousins called and said simply, “What can I do to help?” She was there when I had an emotional breakdown after the move to SF.
So many friends have stepped up in ways I never expected. One of my mom’s friends took many actions to protect her and the house and help me in ways that I didn’t always love but it kept my mom safe. Many of my mom’s friends really helped getting her meals, driving her places to help cut down on her driving until we were able to get her car away and regularly checking on her. My friends sent me flowers at times I really needed it, helped me get dog therapy, visited my mom when they could and brought photos and chocolate, held packing and unpacking parties, talked to me during really long drives, took me for hikes and were there showing up when and how they could.
This is a long haul and it’s funny how in situations like this if people show up, it’s in the beginning. When you really need people to reach out is months and years down the line. Checking in by a text, email or phone out of the blue can be valuable to let the person know you are out there thinking about them. I have several friends and family who have done this for me. I even got calls from a few of my friends and family on Christmas that I didn’t realize how much I needed until after.
This is also true for the person with dementia. They need to hear from family and friends as time passes. I sent the phone number and address to the facility to all her friends and family and many of them will call her and send her letters. She constantly carries those letters around with her.
They shared advice constructively and once I made a decision (even if they doubted the decision), they told me how much they believed in me and showed up to be there for me through it. And if they did doubt the decision but saw that it was a good decision after, they would share that.
It’s important to understand the same people can make it harder and easier through how they are handling the illness. Its a messy road because everyone is processing their own emotions. I can’t stress it enough to focus on the support that gives you strength and block out as best you can what doesn’t.
As mentioned earlier in this post, it was hard to find anything I could directly relate to or give me guidance on the road ahead. It was emotionally hard to research at first too.
Everyone points you to the Alzheimer’s Association website or phone number when they first hear about the issue. Don’t get me wrong there is a lot of information on the website and yes, you should check it out. Early on for me, I was searching for stories I could relate to and how people got through different aspects of the illness that was similar for us. I needed content that helped me understand and accept caregiving for our situation.
Telling you to join a group is another favorite of people trying to help, but I didn’t want to do that early on because I was so busy working and handling other matters to have time for a group. Additionally, I was in the reluctant caregiver phase for a while. My therapist during that period used some caregiver adjacent term to help me get me comfortable with it. Plus, any groups I read up on or finally checked out were filled with people older than me and who typically were married to the one in need and/or the person was in the same city. I realized I really wanted to talk to other single women dealing with this remotely and having the care receiver fighting against them to find out how they handled it. That was tough to find.
At the end of 2015, I emailed a women’s tech group I’m part of to see if anyone else was going through this. They all came back with a number of recommendations and very supportive responses. I did find a couple other women going through something sort of similar and we formed our own support group.
What was the most valuable from the responses was a recommendation to listen to This American Life recording around using the improv technique “yes and” to engage with someone who has memory issues. This completely changed everything for me in how I handled my mom and made the situation much more survivable. I started using this approach pretty regularly with my mom on all our calls in 2016 and when I engaged with her on almost everything in 2017. I only fought to get her into my reality when I needed to keep her safe from herself or others.
COST OF CARE
One thing I researched when I realized what was happening was cost of care and it gave me a couple panic attacks as I realized the disease could potentially bankrupt my mom. We had already dealt with that fear with my dad’s cancer when he was diagnosed at 64 and didn’t have health insurance. Now my mom was facing a 10 year average life span for this illness. It played into my decisions about how to setup care for her.
Hiring a full-time (24/7) independent caregiver in the home would cost at least twice if not more as much as moving her into a senior living facility at the base rate, and that doesn’t include the cost of maintaining her home, food, or really any other expenses. Her social security covered about 15-20% of the starting cost of a senior living facility. I stress starting cost because facilities usually have a monthly base fee for rent, food and other standard amenities and then they typically have add-ons for increased levels of care. They rate how much additional support is needed and add costs accordingly. She has some savings that I managed to protect despite how much she loved giving away money and shopping. We actually had one senior living facility refuse to accept her as an applicant because I was up front about her savings on the forms they required. I learned after the fact that all they needed to hear was that she had enough to cover 10 years of care (that is the magic number) and I could have claimed it on their application even though that is not what we have.
The best option for us to survive this was to move her into a facility and liquidate her assets to ensure we had enough to cover her care for as long as possible. I went with a larger facility because I knew the board and care places were too small to handle how high functioning she currently is and allow us to adapt to the change in the way I needed to manage it. What I have learned is no matter what you think a place and move will cost, add another 20% or more on your estimates. There are many unknowns.
I do better when I have something to work on that makes me feel like I’m making progress to solve the problem. All the way back in 2013 when I suspected the issue, I started cleaning out closets and getting paperwork done during every visit. I was having a hard time sleeping at my mom’s home because of the stress of seeing her change, thus, I would sort through old photos and files in the middle of the night. I started setting up goals to accomplish on every trip.
For example, while I was in for a couple days in Feb. 2017, I managed to not only get her to her first Memory Clinic appointment, I also fixed a leak, fixed the back fence that had fallen down, interviewed a couple of estate sales people, fixed the heater and got paperwork done to permanently forward the mail. I had gotten really good at making the best use of a few days visit to help both of us.
I’m not telling you this to make you insecure that you are not doing enough. I’m telling you to be realistic and strategic about what is happening and what needs to get done to get you down this path. Control what you can and let the rest go.
So many times in 2017 it felt like death by paperwork. A solid 6 months I spent a couple hours every morning calling people, filling out forms, faxing and mailing and calling again. Handling another person’s affairs is a complete time suck and a lot of it has to do with inefficiencies in the different companies (especially all their efforts to automate communication and secure accounts).
One financial company routed me to so many people about getting the DPOA (durable power of attorney) accepted and sent me many different forms. After being transferred multiple times in one call and being on the call for several hours, I was so angry at the group because they were explaining how it was getting too late on a Friday to fully address my issue. I responded, “Oh is this inconvenient for you… is this hard on you because try living my life right now.” I think I yelled that. There is a recording somewhere. They were giving me the same bullshit about how they can’t accept the DPOA. I basically said, yes you can handle it because it is recognized by a court of law. They said they would consult with someone more senior and put me on hold again but I was disconnected. Thankfully, I was disconnected into a survey asking about how they handled the call. I gave all 0s. Then I got many calls that following Monday apologizing profusely for the treatment and misinformation. They made sure the DPOA was setup as quickly as possible. Take-away, give 0s on surveys to get a better response. Its sad but true.
I had a lot of angry calls with service reps that I’m not proud of. It was cathartic in a way to have someone to fight with when I couldn’t fight the disease. My anger was at all the lost time getting through these calls and talking to so many people that couldn’t fully address my questions or gave conflicting information. Get as informed as you can and push back when something conflicts. Don’t be afraid to ask for a supervisor to help and be willing to go on hold because they will eventually take and resolve your call.
There are so many boxes to tick and it’s so hard to keep up with it all. Try your best to break it up over several days and pace yourself. Know this period will pass. One day you will wake up and realize you don’t have to call anyone or fax anything or mail anything or fill out anything in triplicate. Sleep in that day.
I managed to finally trick my mom into accepting a caregiver in her home in Jan 2017. She was getting to a point where I knew she needed someone to be checking on her, and I wanted to set the stage to transition to someone else driving her around. She was so paranoid about strangers and the stigma of a caregiver so she had refused help up to that point. I told her a friend wanted to go to church with her and that broke the ice. With time, she became comfortable with the people who came in and started confusing the different caregivers. What mattered is they were kind to her and she called all of them her friends. She thrived having a buddy. She was clearly lonely and in need of more human.
For in home care taking, we used a mix of someone independent, working with an agency, and family and friend support. Independent was valuable because the person was flexible and able to be there last minute or extend hours as well as help with meds. Note, you are legally required to manage the relationship as an employee/employer in the US and pay taxes accordingly. I used a company that handled taxes and independent employer requirements, but I still spent a lot of time managing the paperwork. The caregiving agency handled all the paperwork as well as found replacements if someone couldn’t make it. As for family and friend support, that can be helpful as well as challenging (especially trying to coordinate and communicate remotely). A lot of time went to simply coordinating care between the different groups. You have to figure out what works best for your situation and what you can afford.
I also made an effort to lock down things in the house to protect with the different people coming in to care for her, and she got so anxious about the locked door that she broke into the space. We went through this a couple of times before I gave up on locked doors and found other ways to hide or remove anything important.
I ramped up the caregiver support from Jan. through Aug. but kept it part time so she could get used to it and to minimize costs. It worked for a while when I was sorting out where to move my mom, get her affairs in order and ramp up in my new job.
After the Alzheimer’s diagnosis in March, I bumped up her support to have someone visit her every day of the week and I took the keys to her car. The day after I flew home to SF, I got a call that she was out driving her car again. For a few weeks, friends and family kept taking away keys from her, but the next day someone would see her out driving her car. It was like having a teenager sneaking out to joy ride, and it wasn’t until one of her sibling took the car that it stopped. We learned later she was wily enough to call the dealership and get them to bring her a spare set of keys, Then she went to the hardware store and got multiple copies. The family was reluctant to take the car initially because there was concern she would think someone stole her car and call the police. Meanwhile, I was fighting a slow and painful paperwork process to get the car title out of my dad’s name and into hers so we could sell it.
She was a bit of a trouble maker as the disease progressed, and she was acting out in a number of ways. She was becoming more and more of a child, but a grown child who still has some knowledge of how the world works as an adult. She enjoyed her caregivers, but the disease progression made it hard for them to manage her and she kept accidentally breaking things in the house. It’s hard to fully explain all the ways a person becomes hard to manage when they can no longer fully and rationally engage with the world around them. If you are going through it then you may know what this is like. If the care receiver is easy to manage then you are lucky. Reality was by the summer of 2017 we were at a point where it was clear she had to have 24/7 supervision and it was time to move her.
The benefit of my mom’s friend freaking her out in Feb. about me taking her away was it confirmed how she would take it and how to best handle it to make sure it was successful and have as little stress on her as possible. Meaning, I told her what she needed to hear, which was she was coming to visit me. She was the one who initially started talking about going on a trip sometime in May 2017 and that developed into traveling to see me. So I fostered that conversation every time we talked up until I finally moved her. It is a kindness to her emotional happiness to be in a state that where she is only visiting and will eventually go back.
By the time I took her from her home, all her friends and family understood what was happening and why. Most either supported it or at least stayed out of the way. A week after she left her home, the air-conditioning died and it was one of the hottest weeks that year with triple digit heat. The following week Hurricane Harvey hit. Yeah, I took all of these as signs the move was the right decision and right time. I took what I got to help me get through it.
SENIOR LIVING FACILITY:
Facilities can vary in terms of their setup. Some have different stages of support areas:
Some facilities have all 3 options and others may only cater to one (especially memory care). Additionally, there are smaller and more cost effective options with places like board and care homes. These are typically a home with only a couple residents, and they cover meals and other basic shared services. Some of them do specialize in dementia care. The common value wherever you go is the community, activities, and the support for residents.
PICKING A PLACE:
If you can afford a senior living facility or board and care home, I seriously recommend considering this for the person you are caring for. In the early stage of dementia there is so much you don’t fully realize is coming in terms of care. I’ve heard many stories of caregivers being completely taken over by their charge’s care. You may think that this won’t happen to you or you prefer to keep the person in their home or yours. Its easy to feel that way in the present moment, but keep in perspective progression and how long this may play out.
If you do not have the option to move the person into a facility or even if you do, work to setup a support network. Find help in friends, family and non-profits that can give you breaks. There are adult day care programs and other programs you can get involved with to give you respite which you will need whether you are working full time or not. My mom kept my grandmother in my grandmother’s home but those last 5 years really took a toll despite the fact that other family members lived with my grandmother.
When I first started calling around to get information on facilities, I gave a false name and said I was calling for my boss. I also used a phone number they couldn’t call me back on. This cut down on the sales follow-up calls. When I narrowed down the homes I wanted to see, I scheduled appointments and gave them my real information. They would do a couple follow-up calls and once I actually picked a place, they didn’t reach out anymore.
There are other groups and individuals providing the service to help you find a senior living facility. Be aware of their affiliations because they may be driven by finder’s fees. Through my network, I found Next Steps for Seniors and Keri made it clear she was doing her job to help families more than to get a finder’s fee. She helped me so much in making the decision on a place that she didn’t get a fee from. She was the one who really made me understand how important location was, and she even came by to look at and confirm that the memory care facilities I was considering for the second move were a good option. Having an unbiased and unaffiliated opinion was such relief and comfort.
I can’t stress enough how vital it is to have the person near you. My father’s mother was moved near where she lives, but it meant a 5 hour drive to get to her. Her friends and family in her area would visit but that slowed and it really upset my father that he couldn’t get to her fast enough when she passed. There are so many people now that do not live close to family which is a challenge. Plus, people who are older living in their own home can be isolating and make them vulnerable from a security standpoint. I’ve also read the horrible stories about some senior living facilities too, but there are many that make for a much more enriching and supportive living experience than being on your own. Loneliness is crippling especially when you are older and these places can be one of the best ways to combat that whether you have dementia or not.
Outside of location, I was looking for a place where the staff was attentive, supportive and kind, was big enough for her to explore, had access to religious services, offered lots of activities that she would want to do, and other residents she would potentially make friends with.
Typically, you start with a tour of the place and that’s a good time to ask questions on how they are set up. If you want to move forward with a place you may have to put down a deposit to hold a spot during the application process or even get on a wait list. The facilities have an application that includes form 602 (Physician’s Report for Residential Care Facilities for the Elderly — RCFE) in CA and about a week or so before you are scheduled to move in, they do an assessment. Form 602 is required in CA to admit someone to one of these facilities (especially memory care), and it was difficult for us to get physician sign-off. Neither her neurologist nor cardiologist who she was mainly seeing would fill out the form in full. I had to get a new general practitioner in Houston and even then, he wanted me to fill out the form and then he would sign it.
What’s frustrating is that I could have used some guidance on how to fill out the form to begin with. If you have to fill out the form, then seriously think about how much the person is able to function independently. The more you say the care receiver needs help, the better chances they will get support at the start, but it may also drive additional fees for care at the facility. Also, if you say they are an elopement risk on the form then it may cause the facility to require you go into memory care which I didn’t want to do initially.
The assessment to approve the resident can take many forms and it can lead to an increase in how much care is given in the start despite form 602. The assessment is usually done a week before you move in. I went through the process with 3 facilities to give myself options and make sure we were approved by at least 1 of them. One place only called her general practitioner to talk with them, another spoke on the phone with her primary caregiver at the time and one had a nurse in the area that went to her house to assess her which cost $500 to conduct.
Once the assessments were done and we were approved, I had a window to decide where she would go before we would lose the spots that were held at the different living facilities. I debated the decision until the last minute on Friday morning and then made the call and went to the facility to sign the paper work and pay the deposit and first month’s rent.
SETTING UP THE PLACE:
When I knew the assessments cleared and I had to decide by the end of the week, I emailed friends and family to give them a heads up, and set up flights to go get my mom that following Monday. That week different friends went shopping with me for stuff for the place and helped me talk through the decision. That weekend 11 of them came out in different ways and last minute to help me setup the room. One friend was in town from London and flying out that day but still came by and put together furniture. Two showed up to paint cabinets and make the place feel more warm. Several built out or donated furniture and set up things I didn’t realize we would need. They showed up and were there in so many ways it blew my mind and it kept me moving. I am so lucky for my friends. They are what held me together and what still holds me together.
THE FLIGHT to SF:
Some of the hardest days of 2017 included the initial move to SF and then the move to memory care. I felt like I was watching myself from a distance when I was going through those days because I hated myself so much for moving my mom.
I told my mom’s friends and family the move was happening and they needed to see her now but not tell her, in order to ensure I could get her on the plane. Another fun highlight to note is the night before I flew out (right after spending a full day setting up the room), one of my mom’s friends accidentally included me in a message to others about how disappointed they were with me. Just the kind of uplifting message one needs in the middle of all this.
I arrived Monday morning and spent the day getting her packed and ready to leave Tuesday morning. I focused on packing clothing, toiletries, a few memorabilia she loved, her pillows and her meds. The morning of the flight we had many conversations the cross she wears that my dad gave her. I had made the call to hold onto it until we went through security, but she looked for it over and over again in the span of a few minutes and she couldn’t retain that I was holding it. Her anxiety about the trip was being communicated through her search for the cross. We were a little rushed to get out of the house, but I tried to take her to look at the fake Christmas tree she had left up all year one last time as well as to look around the house at things she loved. She has no memory of this now.
It killed me not to tell her to say goodbye to the house she had known for 40 years. It still breaks my heart at the thought of it. I desperately wanted her to understand. I still want that. I want the mom I had who I could talk to about this. I can’t think too much about it because it hurts my heart. It’s like looking into the sun. Yet her hope to see her home and belief she is only visiting is good in many ways. I’d rather her believe it’s out there and she will see it again vs. forcing her into a reality that she may not even believe with time anyway. And in turn I find some comfort living in her reality with her. Now when she asks about going home, we talk about how my dad will come to pick her up when she is ready and how he is busy taking care of the house.
She was excited for the trip and also kept forgetting that we were going on a trip. One of her closest friends drove us to the airport, and we all chatted the whole ride about how much fun visiting SF would be. It was a good send off and it was helpful to have someone else there who supported the move.
While at the airport, I received a text from my manager to talk about the infamous memo that went around at work. I had caught wind of the news and it actually helped me laugh in the midst of the trip. Hearing about this document claiming reasons why my gender was the weaker sex, as I was in the midst of moving my mother across the country and staying calm throughout, I though, “Sure, I’m the weaker sex”.
Throughout the flight, my mom held onto her stuffed Minnie mouse that talks and kept asking me all sorts of questions especially how much longer the flight was. She also started to talk about how it would be great to fly back home right after we got there.
We got off the plane, got our luggage and I got a cab to take us straight to the senior living facility. We went to her room when we arrived and she loved it. There was a welcoming group and they tried to be sensitive to the storyline about her only visiting. An independent caregiver I hired was also there waiting for us to help engage with her. She was so used to caregivers at this point that she immediately took to the person and called her a friend. I had setup a puzzle and put on one of her favorite movies which all helped her settle in. I unpacked my mom while the caregiver got her involved with some activities. I also was able to get all her meds out of the bag and handed over to the med techs because the facility required that they manage all her meds. She had been very territorial with her meds because it was one of her last stands for control, but that changed with time in the place. After getting everything set up, I finally went home and tried to regroup while the caregiver made sure she was taken care of.
After moving her into assisted living, the initial couple weeks were hellish. It was all I could do to keep myself from going and getting her and taking her back to Houston. The second night she broke down and told me how I had pulled one over on her and that she was devastated. An hour later that was out of her head and she was enjoying a movie. My therapist had coached me on staying positive and confident about the place no matter how she reacted. To think of it like leaving a child at school for the first time.
At least daily if not multiple times the first couple weeks, my mom would pack her bags. Either I or the caregiver would unpack it. She was scared of staying in the room by herself and she was constantly calling me on her cell. She would call within a few minutes of the last call not remembering what we discussed. I used “yes and” constantly, as well as redirecting. Whatever she said I went with. She was always right. Sometimes she would tell me to stop agreeing with her, and then I would agree. The independent caregivers helped keep her engaged to a point and helped her get to meals and activities. When residents took their pills from the med techs during meals, she started to follow along since everyone else was doing it.
Somehow I managed to get her to see a doctor that first week as well as get her a California ID. I’m still a bit surprised that I pulled that off. She threw a fit about both visits but she still went in with me and didn’t fully comprehend she was getting a California ID. I would agree with her that she was right it was horrible of me to take her there and then try talking about something else.
My advice is to line up a main doctor early on. It will help with any medical issues that arise. The facility can message the doctor for any medications that are needed. Find a doctor who can understand and support your situation. Also, make sure to get approval for pain meds (e.g. Advil) at the start. The facility won’t give it unless it is prescribed by a doctor.
Assisted living ended up being too isolating for her. She was very high functioning, but was at a point where it was hard for her to adapt to the place and retain anything I told her about how things worked there. Granted, she was functioning under the assumption she was only visiting. I had independent caregivers with her during the day part-time to help her adjust and was planning to ramp that down. Because of her Alzheimer’s diagnosis and because I filled out form 602 that she shouldn’t leave the facility unassisted out of concern she might get lost, it led to one of the more stressful moments in the move.
The first weekend she was in the place, she tried to leave with a resident she had become friends with, and there wasn’t a caregiver with them at the time. Neither of them were allowed to leave unsupervised even if they were together. Because they left, they both became designated as a flight risk. She was no longer allowed to stay in assisted living unless I hired an independent caregiver to be with her full-time and she wore a wander guard that sets off door alarms when she leaves. I didn’t realize this was a potential risk, and once it happened, we couldn’t go back.
Learning we would have to pay for 24/7 care at the facility caused me to break down finally from the stress. The expense was much worse than paying for 24/7 care and keeping her in her home. That day was tough, and I seriously considered flying her back to Houston because memory care seemed too extreme. Thankfully, a good friend and someone in my family both helped talk me down. They mostly listened and gave witness to how difficult the situation was. They supported whatever decision I needed to make. When I was calm, I thought seriously about what that would look like to take her back to Houston, and I realized we had gotten this far and it wasn’t going to get easier going back. Plus, I would probably never get her back to SF if we did.
Despite my meltdown, I pulled myself together and gave a conference talk the next day. That day was a bit of a blur (granted most of that month was a bit of a blur). Still I’ve already learned that keeping busy with something I can control actually helps keep me moving through the really hard parts of life when things are out of control. That’s why I worked through this period because having deadlines and things I needed to do kept me tethered and distracted. It kept the overwhelming thoughts to be at bay. I am very grateful that I had work, managers and a company that was a supportive and positive environment for me while I went through this. At times, it felt a little surreal going to work because my personal world felt like it was a disaster zone and work was such a calm and sane space.
The events of that weekend helped me finally see that our only option really was to move to memory care. For a few days, we did the caregiver and the wander guard while I assessed the options. She was used to a caregiver but the wander guard pissed her off and made her not trust the people at the facility. I talked them into taking it off for one night while we were confirming how necessary it was. The result was that they required it. So I went over to put it back on myself because I wanted to redirect her anger away from the people at the facility so she could get comfortable with them. She was so angry with me that night. She looked at me with such hate when I left. She spent the day after calling me every 5 minutes and leaving messages on how angry she was. I didn’t pick up and I didn’t go see her. When I finally went to see her the day after, she had calmed down. If you asked her now about the wander guard she wouldn’t know what you are talking about.
When I was researching facilities, I toured both assisted living and memory care. Initially, all the memory care facilities I saw seemed depressing. All of them. The people seemed so lethargic, sad and confused. It felt like my mom was not at that level of confusion and it would be cruel to move her into that space.
Bottom line: memory care exists because people have memory issues. Many places I looked at wouldn’t even consider letting her try assisted living first because of the Alzheimer’s diagnosis. This factored into my original decision of where to go, but after what we went through, I realized why places require memory care for her condition.
After moving her into memory care, I started to see the residents differently. They do laugh, have fun and engage in very insightful ways and they have their moments that are not great, but it’s the disease. Most just want to be seen and heard and shown kindness and they respond with that in return.
During the week after my mom became a flight risk, I met with the assisted living and memory care administrators at the same facility to talk through options. Through that conversation it I realized memory care was the right option and I needed to take action. They wanted to move her during a week day to make sure the right level of support was around for any issues. I decided it would be best to move her before I flew back to Houston to pack up the house which I was supposed to do after that upcoming weekend. I realized it would be best to have her in an environment where she would get a lot more care and supervision. We ended up picking a day that was a couple days out. It was again a rushed change and that was the other day that I absolutely hated myself for and had to move through it like I was outside my body.
The facility helped setup movers to move the stuff in my mom’s room from assisted living to memory care. Even though it was the same building, we needed movers and they needed to be good at handling moves in facilities like this. They need to be able to do it without agitating the residents as well as set up everything so it’s not too upsetting for the person who is moved.
I picked up my mom that morning and I took her to a number of places to keep her busy like lunch, shopping and to the ocean. While I was taking her around, I was communicating with the people moving her room, and I was communicating with people back in Houston to get the house locked down because of course that was the day they announced Hurricane Harvey was going to hit Houston by the weekend. It was another crazy hard day that I tried my best to focus on what needed to get done and ignore how upsetting it was.
When we returned back to the facility, I took my mom to the assisted living social activity where they were listening to great music and then we went down to the memory care part of the building where they also had great music and chocolate. I told her that there was an issue with her room and they moved her into a different room while it was getting fixed. She was worried about her stuff, but she saw she had all her things and the room was set up beautifully. I had to take her cell phone away because it’s not allowed in memory care as well as any items of value because they can easily get lost. I had hired an independent caregiver she knew to engage and distract her again and help with the transition.
I again spent several days after the move to memory care with this horrible urge to go get her out of the place. It was like a person screaming in my head all day for several days “What the FUCK are you doing?!”. Again, working saved me because I went to the office and focused on getting one task after another done. She was upset about memory care for a while, but they worked hard to get her to have fun and adjust to the space. It was a very difficult adjustment period for both of us, and I don’t really want to dive further into the details of it. I will say you have to give it time, do whatever you need to keep moving and distracted, and give it time.
If I had to do it over again, I would still move her into assisted living before memory care. It was stupidly hard and sad and all the things but it was necessary for us. It made the transition work because the assisted living section really looked like a hotel to help her feel like she was only visiting. Once she got familiar with the place, it was easier for her to accept being locked into the memory care portion of the place and not exactly see it as a bad place. Plus, I managed to get to know some of the family members who had their loved ones there and they played a key role in helping me understand what to expect and how to adjust.
After 2 weeks, she preferred to be where she was and was not in a rush to leave in both assisted living and memory care. The moves were impossibly hard, but when I realized it needed to happen and made the call, it was like moving through an illness that we eventually recovered from. Try to hold on to the idea that things will change and can improve. Sure, my mom still talks about going home all the time and she has days or hours or minutes where she is not happy, but on the whole she is much happier and safer and is having fun in the place she lives now. It’s not perfect, and I’ve heard stories of people screaming for months about getting out of a place. I can’t promise you what this will be like for you. I do know that finding a good place and staying positive with the person you are in charge of helps.
What’s weird is how she gets that there is a locked door she can’t get through in the facility. Yet, she is perfectly fine leaving and returning to the place through that door. She goes back without protest because she has gotten so used to the space and clearly feels safe there. If anything for a few months after she moved into memory care, she wouldn’t leave for more than 10 minutes a day. Now, I can get her to go out with me for several hours at a time. Eventually, she wants to go back and see her friends at the facility and sleep in her bed. She loves walking around the halls to see what people are up to, chatting with them and telling them how much she loves them.
A turning point in both of us adjusting to this new norm was Christmas. It is her favorite holiday, but I have not enjoyed it since my dad was diagnosed. During Thanksgiving weekend, a friend helped me get a tree, and put the idea in my head of getting my mom to help decorate it. The day we decorated the tree my mom was so overjoyed, it was infectious. She couldn’t contain herself. At one point, she sat on the couch playing with this ornament she gave me years ago that is a tricorder and it has Spock saying different things when you push the button. She played with the tricorder for 30 minutes and laughed and repeated everything Spock said no matter how many times she heard it. It was so lovely. I spent the rest of the holiday finding different things we could do like driving to look at Christmas lights and singing carols, visiting this gorgeous Victorian hotel that had over the top Christmas decorations, and going to the Dickens festival (she kept claiming how she wasn’t dressed right). Our favorite thing was hanging out in my home watching old holiday movies, looking at the lit up tree and coloring. It was a good holiday for both us this past year.
PACKING THE HOUSE:
Because of the hurricane, it understandably delayed when I was able to get back to Houston to pack up more of her stuff. Her house didn’t flood but many places near her were devastated. I spent a few days sorting through the house and setting aside what else she would need. I started with photos because I knew I wanted to put my best energy into getting those packed. The goal was to get the stuff ready so we could do an estate sale and then donate the rest. A few friends came at different times to help sort through the house and were wonderful about making me keep some things that held good memories while letting go of things that would server her better being liquidated.
ESTATE SALE & HOUSE SALE:
It took some time to finally get the estate sale going and it took some time to get the house sold. That last year, I went from not wanting anything to do with the house or the stuff in it because it felt like a crushing weight to feeling like letting go of all the memories the stuff and the home we had known for 40 years held felt like a death in its own way.
When I was in her home for Christmas of 2014, I went hard core on cleaning out stuff and setting up the house to make it easier for her. As I mentioned, I had realized this was really happening and it was the best response I had to combating it at the time. That was when it sank in that I couldn’t do this by myself. The whole handling of the house and her. Thankfully, I remembered there were estate sales groups that could do this for me. Granted, when I researched them, I found many recommend not cleaning anything out. So I stopped cleaning the house out after that. Some that I interviewed later said there was still too much in the house to fully process. I’ve landed on the fact that I am thankful I did the work I did, because I made an effort to put a lot of family photos up to engage her and set things up that helped her stay independent for 2015 and 2016. It also allowed me to assess more about what was in the house.
I knew I didn’t want to hold onto the house because it was more of a burden to manage remotely. Between general maintenance and different things breaking from age, weather or natural disasters, it was too much on top of handling her care. I also wanted to get her assets liquidated to cover her care. It was not a decision I took lightly and it still hurts like hell. I scream cried in my car after I gave up the phone number we had since I was 3. I actually still have the memory of my mom teaching me that number before I went to my first day of school. I’ve had many days where I want to scream cry at the pain of letting go of all these things and ultimately letting go of her. When the house was finally empty, cleaned and on the market, I sat silently and alone for several hours in all the rooms recalling as many memories as I could. It was my last day in the house I grew up in. We have to let go to survive, to move on with life.
There is so much that has happened on this journey and I’m not including all of it because it’s too much to include, and some is frankly too painful. Yes, there were more sensitive and painful moments than what I’ve mentioned. There are so many times this past year where I would ask is this real life.
People ask me are you done now or some form of that and they mean well. Sure, I’m past the major change with the move, getting her more help and adjusting, but we are not done. This is the phase of watching her disappear and eventually die. When I’m asked how she is, the reality is that she is progressing in the disease in terms of forgetting more and slowing down. Some days are easier than others. There is still plenty to do, like getting supplies, checking on her room, tracking down or buying missing items like glasses, taking her to the dreaded doctor appointments, handling bills and other matters, figuring out what additional care she needs, and seeing her and taking her out to enjoy the world. Part of the intent behind the question is they want me to get more downtime. I’ve been on the go for a long time now and in some ways I haven’t wanted to stop moving because I’ve been afraid the grief will swallow me up.
I try my best to focus on the time we have together and accept the continued changes. If she is up for going out, then we go out, and if she wants to rest, then we rest. We laugh together a lot which we haven’t done for the last couple years. I find enjoyment in her enjoyment of the things, and I am much more patient answering the same question over and over and over again. Every time we go out together she exclaims how beautiful all the old buildings are, is surprised so many cars have CA license plates, tells me stories about all the dogs she sees, and asks to go shopping to buy chocolate.
I don’t see her every day so I can keep living my life, and I highly recommend doing this no matter how guilty you may feel. I trust the facility is taking care of her. Usually when I show up she is busy with some activity or friend. Her fear and anxiety has abated significantly. She at times seems to be telling me in her own way she loves me and understands what I’ve done and supports me. At least that is what I choose to believe and that’s what matters.
It’s strange how easy it is to forget how hellish it was last year now that we are settling into a routine, but after 2017, I felt like I should look mauled and torn to shreds and that it was even stranger that I didn’t. And sure, I am a little afraid this is a disease in my cards, but for the most part, I really don’t care. I don’t have time to waste on worrying about that. There is not enough time to do all the things.
Some days are easier and better than others for my mom and me. When she has a good day, I feel like we are going to get through this, and when she has a bad day, I wonder if I should throw in the towel on work and hang out with her all the time. Watching her disappear hits me with waves of pain. Yet, it is wonderful to have the time we have together. I try to enjoy that as much as possible and when tears come, to let them come.
Originally published at nyghtowl.com