Daughter, Mom, Salesperson, & Caregiver
Age: Early 30s
Care Role: Primary caregiver, lives locally.
Age: Early 60s
Diagnosis: Vascular Dementia
Progression: Lives alone. Diagnosed this year. History of anxiety.
My mother has always had anxiety. She took Xanax regularly. But in the summer of 2019, she stopped taking it. She was the most clear I’ve ever seen her. But, at the same time, she didn't know what day of the week it was. She would tell the same story multiple times. She’d bring my kids the same present multiple times.
I thought maybe it was a side effect from Xanax withdrawal. I started looking up symptoms of that. Then I thought there might be a link between long term Xanax use and Alzheimer’s. My maternal grandma and maternal great grandmother both had Alzheimer's. So I’ve kept my eye on it.
On the way to a memorable event - a child's funeral - she called me for directions. A week later, I asked her about the funeral and she said “I didn’t go.” I said “what do you mean, you were en route.” And she said “I forgot to go….no, it's on Saturday, I’m going.”
Shortly after, I took her and my kids to a show. She got up to get popcorn. She left her purse and never came back. I walked around this arena, lugging our coats, her purse and the stroller. Intermission was over. I couldn’t find her. The security guards started helping us. Eventually we found her. She had sat down in a random seat. I was sweating. Panicked. I was angry. I said “why would you just sit down? Why wouldn’t you try to find me? Why wouldn't you ask for help?” Now I appreciate that she didn't have those problem solving skills. She responded with indifference. She said “I just thought this is where we were, so I sat down.”
Getting a Diagnosis
I didn't know how to get a diagnosis. There are so many types of doctors. I said to my mom, “I’ve noticed some things. You might be having a problem with your memory. I’d like you to get it checked out. Maybe medication could help. I want to make sure you’re safe and healthy.” I did not bring up Alzheimer’s. She was reluctant. I guided her along.
We started with her nurse practitioner. The nurse practitioner said “do you have any issues with your finances?” Mom said “no.” I said “all your utilities were shut off last month because you haven't paid your bills.” The nurse practitioner asked me what referral I wanted next. I should have done research before. I could have skipped months of headaches. She referred us to a neurologist. It was a 6 month wait. I waited a month or two and then I looked up other neurologists to see who had a shorter wait. I found another one and they did a short assessment and said “we’re going to do a referral.” I was shocked. I thought that was where the endgame was and they were going to do the tests. I cried in the office thinking “oh god, another month and we are going to have to do this all over again.” We were referred to a neuropsychologist. It was another 6 month wait. We were approaching her appointment and then… COVID. So, it was cancelled.
In July, she started acknowledging that she was forgetting and became less combative about the appointment. I decided to look for another neuropsychologist. I expanded the search because we live in a medium-sized city but there are a few bigger cities not far away. So I found one an hour away and she was diagnosed with vascular dementia in a three hour assessment. That was September 2020.
That appointment was frustrating because the doctor said “the positive news is it's not Alzheimers.” That's all my mother heard. But he didn't give me any real information. So my understanding of vascular dementia came from going home and googling.
I don't think she really gets it. She will ask me what it is.
My sibling didn’t believe me. But then I told him that the hairstylist told me she showed up three times in one day asking when her appointment was -- she’d leave and then come back twenty minutes later. I guess it was someone else saying it that made him understand.
The neuropsychologist that diagnosed her had a therapist on her team, She works with family members. It’s extremely helpful. The first meeting she got some background info and my story. My second meeting was on Monday and we talked about getting a home health aide. She explained that each county has an aging agency. I called them this week and talked with them. That was really really helpful.
It's such a nightmare. She has some friends that are very nice and great, but she has some other friends that as soon as they realize what's going on I'm going to be concerned that they're going to take advantage of her.
My immediate family knows -- my siblings, my dad who she divorced, my husband of course. I told a close friend of hers. Her friend runs a multi-level marketing program for weight loss and my mom always had her products so I called her and said “just so you know, if my mom asks about buying stuff please tell her you are out because she has dementia.” She told me she had been giving it to her for free because she knew something was wrong for awhile.
But it's tricky deciding whether or not to tell other people. Some people have her best interests at heart. I’m tiptoeing around telling her friends because you can tell from a short interaction. But I will keep it from the people that I don't think have her best interest at heart.
We haven't really had to deal with telling strangers because of odd behavior. My mom has never been restrained. Now she’s the opposite. I thought she might have undiagnosed bipolar. I kind of feel like she's leveling out and almost becoming indifferent. It's working in my benefit because she just goes along with anything I say and does not get worked up about anything .
I have told my closest friend. We tell each other everything. But I haven't told my outer circle. I'm not sad about it anymore. I'm more stressed. If anyone shows me sympathy I burst into tears. I just want to blurt out “ my mom has dementia” and then not talk about it.
Legal and Financial Planning
As soon as she got the diagnosis, I urged her and she agreed to let me do power of attorney. We got her medical and financial stuff taken care of. We did her living will.
This last month has been all about her finances. My brother said he wanted to help with the finances but then he realized that it involved a lot of day-to-day work with her. We have faced a bunch of challenges. She closed the account where her monthly money was being deposited but she didn't tell anyone. When I went to pay her bills, the money wasn't there. I had to figure out what had happened and where the money was. Then she went to withdraw money from her other account one day. Because of COVID, I stayed in the car and she went in. She came back and said the account was “in limbo.” I assumed she meant the money was pending. So we went home. I called the bank and they didn't answer so I went down the next day. She had withdrawn too much money - from her spending account and the account where I pay her bills. So now we just have the money come into our joint account and then I transfer the money for her bills to a new account I have on my own so she can’t touch it and I have money dedicated to pay her bills.
She had major depression issues all her life. She'll get really down. She watches TV. She has some friends and occasionally they'll take her out or she'll go visit them. But 90% of her days are spent going to the Dollar Store, the grocery, or watching TV. That's something we talked about when she got diagnosed “what are the activities that can help slow the progress?” Like puzzles. Seeing friends. I have a friend I’ve hired because the aging agency has a waitlist. My friend is going to do some light housework, take her on short walks, talk to her, and try to do some puzzles.
She can’t organize her own time. The doctor said the first to go was the executive functioning, your brain's ability to make plans and solve problems. The not paying bills was a red flag for that -- that's why she needs to see friends and do puzzles.
Driving is my next hurdle. I have decided that the best approach is to have the doctor have that conversation. So it's, you know, on the doctor and not me. But I don't know what those indicators are that I need to be looking for when I need to take keys away. That's a big deal, especially as she was alone. It will become a huge job for me.
My grandmother had Alzheimer’s. Her sister left the keys in the car and ran into a store. My grandma got behind the wheel, got in an accident and died. Fortunately no one else was hurt. Driving is a big deal.
I’ve been overwhelmed and depressed. For my mom, it's a very sad thing. But in a selfish way, it is something I could be dealing with for 20 years. That's sad for me.
I gained like 20 pounds in six months. In January, I decided I've got to find a better way to destress. I committed to exercising and I got a pass to the local gym and we went to family swim and exercise classes. Then COVID hit. You need a healthy way to deal with the stress. It's much easier said than done but you got to find a way to manage stress.
When I noticed my mom was off, I decided to guide her not push her to a diagnosis. She was reluctant. At the end she was self aware. I didn't push it. I was assertive that we are going to the doctor. We had to get to the doctor. But I think I struck the right tone of not being too aggressive because he was understandably in denial and upset.
Caregiving is a huge life lesson. You are on a treasure hunt of who can help you and who is going to be the best for you and help you on this journey. I'm getting so much more confidence. Confidence to make decisions. The therapist at the doctor’s office is helping me. Having her guide me through this has given me confidence. It's hard to make decisions, it's helpful to have a guide and feel confident in your decisions.