Daughter, Young Professional, Problem Solver, & Caregiver
Age: Late 20s
Care Role: Primary caregivers; lives with.
Diagnosis: Early Onset Alzheimer's
Progression: Living at home with daughter. Diagnosed 5 years ago. Drives & volunteers.
My whole life, my mother worked in social work. In her 50s, she went back to school to get her masters. She was struggling on her thesis. For a year, she sat at her computer. She’d be there in the morning and she’d be there when I went to bed.
In hear early of mid-50s, she was diagnosed with ADHD and went on ADHD medication. When she finished her Masters and graduated, I thought she would get better. I thought her challenges were from stress. But she didn't get better. She was having more and more difficulty remembering conversations from twenty or thirty minutes before. Things were not normal and we have a history of Alzheimer’s in the family.
Getting a Diagnosis
We went to see her regular general practitioner and she sent my mom to a neurologist. The neurologist did a series of questions -- “remember these five words'' and “what are these three animals” and “draw a clock.” During that first appointment, he diagnosed her with Early Onset Alzheimer’s and told her she had three to five years to live. It was abrupt and shocking. He had prestigious credentials but no bedside manner. We hadn’t had a CT scan. We hadn't had any in depth cognitive testing. I said “you are being extremely cavalier with the diagnosis. You just gave us this information and timeline for how long she will be around and you expect us to just be okay.” I was -- I am -- young. I was thrust into this advocacy role. My mom wasn't comfortable advocating for herself. She felt really vulnerable. We went for two days of cognitive testing and a CT scan. They ruled out other potential problems. We moved to a different neurologist. The Alzheimer’s diagnosis was confirmed.
She got her diagnosis rather early on in the arc. I had no idea what to do. I mean really, completely clueless. The two of us spent two days on the couch crying, watching Grace and Frankie and eating chocolate. Over the next couple months, I went through a lot of the stages of grief. I was in denial. I was angry. Then, I moved onto acceptance.
She shared the diagnosis with her close friends and family and her co-workers. It was obvious. She was struggling. She was diagnosed shortly before she left an internship. It was clear to them that something was wrong. Other than that, we don’t really talk about her diagnosis when she is around.
I’ve shared with friends who have been a big emotional support to me. A lot of my friends are also my colleagues. So I can tell them “an emergency came up and I’m going to be in in two hours late,” if she’s having a really bad morning.. I had to go through a process of acclimating - almost training - my boss and direct reports to working with someone in my situation. In the beginning, they didn't respond in the most constructive way. Fortunately, my boss has been open to rethinking the company's response to parental caregiving. Most people don’t do this in their 20s or 30s, so they don’t quite understand. But fortunately my job has been supportive and let me shape their response.
Legal and Financial Planning
I took on a lot of things I didn't want to do. But I am a “let’s get things done” person. I shut myself off and got to work. I immediately began applying for disability.
I struggled to get her to talk about life planning - her will, her estate. I’ve had to force the subject. A year ago, four years into the diagnosis I said “I need Power of Attorney.” She was not happy but we weren’t moving forward. I went to a lawyer’s Open House and booked an appointment. I brought her out to eat one day and tacked the lawyer’s appointment onto the end.
The mail had gone missing. She would take the mail and then couldn’t keep track of it. I got a P.O. Box. All my mail and her mail goes there . Mailers go to the house so she can look at those. I had to get all the utility, insurance, bank statements sent to the PO Box. Getting Power of Attorney let me do that for her accounts too.
I’ve gotten weird looks over the years, particularly when I was helping handle a situation. To tried to take care of things by myself. Once I got Power of Attorney, I didn’t need to bring her to the bank and I didn’t have to worry about what she might say. She is really concerned with perceived weakness. With Power of Attorney, I could get done what I needed to get done; it wasn’t emotionally draining for me and it wasn't stressful for her.
I’ve learned a lot just by falling into things. Everything is fine until it's an emergency. Everything was great and then disability was cut off and she was denied Federal benefits. I went through an advocacy group and lawyers and I now have file boxes upon file boxes. She was a social worker so she did not have a big nest egg. Our house is paid off, so we can sell that if we need to. The house is her only asset. She has her Social Security. I live with her and I pay all her bills.
I am totally, totally in over my head. My dad, her ex-husband, told me there were things I needed to do but left me to do them on my own. My mom’s parents have Parkinson’s and vascular dementia, so my aunt, who cares for them, has been an advisor to me.
On logistics and understanding legal documents, I’ve benefited from the kindness of strangers. A lot of people in government agencies have gone beyond their jobs to be helpful. I had difficulty filing for disability and disputing the original Social Security finding, which said my mother was not disabled, even though she had an Alzheimer’s diagnosis. I had to go to her neurologist, who was fortunately responsive, and got letters that were responsive to what Social Security needed. We had to meet with a second neurologist, through Social Security, to get a second opinion. That neurologist gave me a lot of advice on how to navigate the system. Overall people have been surprisingly helpful.
I don't want to downplay the process. It took about a year to get disability. She ran through her entire savings account. It was a laborious process. It not was not easy. The big thing is just being organized. Nobody tells you anything that you don’t ask about.
After a year on Social Security, my mom automatically qualified for Medicare. Nobody expressed that to us. I never saw it in the paperwork. So I was shocked when her Obamacare insurance was denied. I had to pay out of pocket $550/month for a couple of months. Now with Medicare she pays $40/month plus $100-ish out of her Social Security.
These are things that people don't tell you. You have to buckle down and make the phone calls and keep the paperwork going
Disability was my first entrance to navigating these government processes. She was initially denied state disability but the second time it went through uneventfully. Then we moved from disability to Social Security. But because I didn't have Power of Attorney at the time, I was limited in what information I could receive and she wasn't getting her unemployment checks. Fortunately, then she was a little bit more capable of helping me. If I brought her somewhere, she could help me answer some questions and tell people that I was her daughter and that the relevant people should talk to me. The disability is how she gets income every month.
When Social Security was denied, it took four months and I had to take time off work. I worked with an advocacy group. It was a big emergency hanging over me and we were running through her savings.
A year ago, when I didn't have Power or Attorney, we had difficulty with the switchover from Obamacare to Medicare and I went to the Social Security Office once with her and then once by myself and they turned me away. Later I was told that Social Security won't take medical or financial Power of Attorney . But when we got Power of Attorney taken care of, it let me proactively manage issues rather than being reactive. For example, the move over to the PO Box. I was able to start calling places that send out bills and move them over on my own. And I put myself on the bank account so I have access to banking stuff.
When she finished the internship , she did not structure in her day. This is a continuous struggle for me. I work full time. It's difficult to set up a structure. I can handle the legal questions and the advocacy work, because it's in the moment and I can just sink my teeth into it. But helping her find structure and adhere to that structure has been difficult. She’s not the kind of person who wants structure. A large portion of her day is sitting watching TV. She does a lot of scrapbooking. It has let her work through memories and have something tactile to work on. Sometimes she will go for walks, but she thinks it's too cold.
I use a calendar and a whiteboard to help organize my mom’s time. The calendar has the month and the daily schedule and that has been really helpful. Her daily whiteboard helps answer the questions she typically has. It says exactly what's going to happen throughout the day -- who’s coming over, what time I get home from work, or things she has been asking about a lot. She doesn't necessarily adhere to the schedule on the whiteboard. That's been a struggle. I'm still working on figuring out better ways to engage her in the schedule
The pandemic has been difficult, especially socially. My mom was volunteering on weekdays at a preschool. She knew the woman who ran the program and they had her there as an extra person to help out. But that shut down due to COVID. That was a necessary social part of her day.
Even before the pandemic, she felt vulnerable in social situations. Someone that didn't know her well would not have necessarily picked up on her diagnosis. But she told me she felt vulnerable in social situations; she's been worried that she'll ask the same question or not recognize someone.
Even with close friends, she will cancel plans . Last minute she will feel social anxiety.
For the last two years, her socializing has been limited to the family - me, my aunt, her partner.
She's taken a couple of DMV tests, behind the wheel. Those have been stressful days. They cause anxiety. She doesn’t sleep.
We are going through another stage now of decline. She’s been recognizing, without fully comprehending it, that she can’t drive. She’s anxious. She’s constantly checking the oil level in the car. I think that’s about her anxiety of driving. She may be trying to control how it's taken away, almost voluntarily giving it up.
I actually think she’s started restricting herself. More and more she will say “why don't you drive, I like that better.” But I think we are getting to the point where we need to make sure there is no more driving at all. Her spatial awareness has been impacted. I’m hoping it will just fade away at this point, as she hasn't been driving as much during the pandemic. She's feeling more and more vulnerable. She's concerned about her freedom being taken away -- and for her her freedom to her means her car. We’ve talked about how there are ride-sharing apps or that I or her partner could drive her.
If we took it from her, it would really hurt her.
Her partner is an ex-driving instructor. He’s kept an eye on her and gives me feedback. And she trusts and loves him and doesn't feel threatened that he is evaluating her. Her technical driving had been fine. But, she gets lost. She couldn’t get to places she’s gone for years -- she used the GPS to get to common locations.
Things plateau and then, all of a sudden, new things start popping. We are in the process of navigating those new changes now.
I have a family cell phone plan that allows parents to track children or, in my case, for children to track parents. This is a generational difference. An 80 or 90 year old Alzheimer’s patient wouldn’t necessarily carry a phone. My mom has had a phone for over twenty years.
On her phone, I can set boundaries. I have automated messages that I receive a nine, noon, and three that tell me where she is. I have a set different zones so I know when she is in a different area and I am alerted when she leaves our house or her partner’s house.
Once she made plans with her partner and he called because she was two hours late. I could look and see she was in the craft store. Then I can call her if I think she needs help. Obviously that was more useful pre-pandemic.
Her smart phone use is limited. She occasionally scrolls but I haven’t felt the need to pull back access. She has received a few scams over the phone. Fortunately, she usually defers to me but she once let a very sketchy salesperson into the house. With our family cell plan, I have the ability to block phone calls and monitor her internet usage, if that becomes necessary.
Personal Care and Day-to-day Stuff
She tried to make a pot of water for instant coffee and ruined the pan. Cooking was the first thing to go. She had never been a big cook. But it was upsetting to lose it - to be told she can’t do something anymore. Memory was also a big part of it. She would not track conversations.
She had a long term partner, he lives nearby. He’s been helpful for emotional support and socialization but I can’t count on him for more. He comes and visits or she goes and visits him.
The timeframe for when we repeated conversations became shorter and short. Thirty minutes instead of an hour, then twenty minutes. Then she would get caught in these loops where she’d frantically look for something and I could not shake her out of it.
Then she couldn't find the plates or the forks. They’ve been in the same place for 25 years.
By this fall, she was regularly disregarding basic hygiene practices. She often wears the same shirt/sweatpants for multiple days at a time and won't shower. She sometimes smells but when I was more forceful about her needing to shower or change her clothes, she denied the problem or seemed hurt. Socializing, pre-COVID, got her out of the house. Now she doesn't have that prompt. That may be part of the problem.
The smart speaker has been really helpful. She has low blood pressure and has to stay hydrated. When I am at work all day, I can’t monitor that. The smart speaker reminds her a few times a day “drink a glass of water.” She will listen and drink the water. Sometimes when she’s in the house, she wont answer her phone. So I communicate with her throughout the day from the smart speaker. I’ll pipe in and say “have you eaten yet? There are leftovers in the fridge. Heat those up for two minutes and you have lunch” or I’ll remind her that “[your partner] is coming at 3 o’clock. Its 2 now. Take a shower before he comes over.”
She doesn’t want to talk about bringing in help. My sister was supposed to come help but she took herself out of the equation. So that moves up when I need to bring in a paid caregiver. She’s trustworthy enough in the house but she is missing out on some needed socialization. But, in the midst of the pandemic I don't know what that socializing would look like or how to bring a caregiver in. If it wasn’t the pandemic, I’d have someone come a couple of hours a day.
Typically the other caregiver is the other parent. I am the primary caregiver for my parent. The biggest roadblock early in the early years was changing the parent child relationship. I focused on making myself the most trustworthy person. That foundational work has really paid off. She looks to me when she is nervous or anxious or has questions. At the beginning, when she couldn't remember certain situations or important information she didn't necessarily trust what I said about things that had already happened or information she had asked me to remember. She’d think I was grossly exaggerating. So I’ve worked hard to create trust between us.
She has these twisted memories of some of my other family members - not based in reality -- where she “remembers” they did something bad and she doesn't want to be around them and its really impacted her relationship with them. I’ve tried to walk her thru some of these things in a more positive tone so she doesn't distance from those relatives but it hasn't worked. I wonder if those memories are cementing because they are tied to some emotional experience, whether or not she had that experience, and now it is a perpetuating loop.
Part of this, I think, is that our relationship has changed. We aren’t a typical mother daughter relationship anymore. She feels more comfortable calling us roommates; she likes framing it as a mutual relationship rather than me caring for her at all. Fortunately, overtime she has become more comfortable with me as her safe person.
So I am glad she still trusts me.
I lost patience with her at the beginning. A lot. Patience was something that I have had to learn through this experience. I’m still not good at it. But I’m more even keeled. If I could impart any wisdom, just take the breath, go out for the walk.Then go back in with a smile on your face and the understanding that that person can't help it.
The repetitive thing has been a struggle. I get the same questions within a couple of seconds sometimes or minutes. At the beginning, repeating the same story or the same answer to a question over and over again was trying on my, my patience. Going back, I wish I did it a bit differently.
In the beginning I’d say “hey, don't you remember” or “ we talked about that.” Of course she doesn’t remember. It's part of my vernacular and I had to get rid of it.
My overall personality has changed. I've grown as a person, largely because of the challenges in navigating my mom's diagnosis. I had to learn patience and being even keeled even when she's spinning out of control. Adding more energy and anxiety to the mix just doesn't help. I try to just stay calm.