Mom, Editor, & Caregiver
Age: Mid 60s; cared for her Loved One in her 50s.
Care Role: Primary caregiver with her sons; lived with Loved One.
Age: Early 60s
Diagnosis: Early Onset Alzheimer's
Progression: Passed away 6 years after diagnosis. Lived in Memory Care in final stages.
People are in shock. The diagnosis is hard to hear. And it's idiosyncratic to a family and to the time when the diagnosis is made, the level of independence when the diagnosis occurs -- for both the patient and the caregiver. I consulted the Alzheimer's Association when he was first diagnosed. They had nothing, nothing for early onset patients. Most of the caregiver support groups are for people in their 70s and 80s. And I'm kind of going “Hey, I'm still working full time...” I also don't want to diminish the role my son played. I needed support. He provided me with just all kinds of support. And he was very involved toward the end. I was working. If I had to go out on a work trip, it never failed that something bad would happen.
I was the primary caregiver. I was with him. It was always a good wake up call when my sons came. They’d notice the difference between larger intervals. I got to the point where I would prepare my son and brother-in-law for what they was going to see. It is a care team.
Looking back, there were clear signs. I assumed because he was on-call regularly that he was sleep deprived. He was also one of those people that gave all his attention to his current task. He could forget that anything else was going on. There were little things. he called me and said “where are you?” and I said “I’m home. I told you I was at home.” And he said “oh, well. I forgot.”
Five years before he was diagnosed, we were all in Asia for a trip. My son was studying abroad there and we went over to visit him. It was definitely a different trip, with the language and culture. He seemed to be unusually uncomfortable being on his own or improvising in any way. He kept asking for a plan from other people for what we were doing. At the time, I didn't think it was a problem and figured the cultural differences were really throwing him for a loop.
But then on another trip, where language and culture were not a barrier, we noticed he was not comfortable being on his own or improvising. My son and I went into a museum and he just sat on a bench outside. He couldn’t navigate the city or structure his time on his own. My sons and I used to look at each other so much in those days and think “what’s happening?” but then we’d move on.
In September, before he was diagnosed, we went to a conference in a city we had previously lived in for many years. We knew the city really well. We met up with some friends. My husband and the other husband were going to a meeting so I went off with the other wife and we agreed to meet up in a place we both knew well. But they never came. So I called my husband and asked “are you coming?” and he said “we are a bit late. I had some trouble with my phone.” This is a guy who used to build electronics. He shouldn’t have had trouble with his phone. He said “where are we meeting again.” I reminded him where we were meeting. And I heard him ask our friend if he knew how to get where they were going -- effectively a straight line across a not too large park. Later our friend said to me “he was having a lot of trouble with his phone. He couldn't figure out how to dial.”
Around that time, I realized he had stopped using the grill at home. He’d often say “why don’t you just boil it. It’s easier.” There were little things like that he had stopped doing.
A few months later, we travelled to a wedding. We were driving and he was really anxious. He was stressed changing lanes and getting off at the right exit. Later, he went to visit his brother; his brother called me to ask where he was -- my husband had told him the wrong day for his flight.
Getting a Diagnosis
I was at a conference around then and I was preoccupied thinking about him. I was talking to a woman I’ve known for years. She’s a psychiatric nurse. She asked if I was going to stay after the conference and I said “I’m worried about my husband, I have to get home.” She asked if everything was ok. And I said “you know, recently, he’s had an odd reaction to my travel. He doesn’t like when I go away.” She asked me what I meant. I mentioned we’d gone to a tropical location for a conference and he just stayed in the room the whole time. He wouldn’t go out without me. She said “you have cause to be concerned. Those are concerning signs.”
I told her that I had been trying to raise it with him. I’d asked him if he was ok. He said “I’m just tired.’ He dismissed it. I told her I couldn’t get him to go to the doctor. She said “well, I think he should be evaluated.” And I said, “so what do I do?” She was brilliant. She said “you need to have a family intervention. Get your sons to sit and tell him they are concerned. And I said, “I really don’t want to drag my kids into this.” She said “this is a family situation.”
So in January we talked to him and he summarily rejected it. I said “you’re mixing up dates, you used to be so precise, you are having trouble with the TV remote.” He said “those things are so damn difficult.” I said “I noticed you are struggling. I want to make sure you are ok. If you are overtired, we can talk to the group -- he was a physician and had been part of a practice for over twenty years. He said “don’t talk to the group.”
The group was like family. In April -- 7 months after I really noticed the concerning signs, one of his colleagues called me and said he was worried about my husband. He would get very flustered on rounds with clinicians. He was juggling things. What he saw was spot-on but he was missing other things.
I said “I am so glad you called. I can't get him to see care. I wanted to tell you, but I didn't have any basis.” His colleague was devastated. I said to him “I need you to ask that the hospital order him to be evaluable. He will listen to the hospital.”
My husband was very quiet when he heard from the hospital about an evaluation. He understood. He didn’t admit anything. I don't know whether he knew something was going on. He never would provide care if he didn’t think he was 100%. That makes me think he didn't know something was missing.
I contacted his primary care doctor. He evaluated him and said, let’s get a neurology consult. They did an MRI and it was clear. The neurologist had a brutal bedside manner. It was awful. He just said “you have Alzheimer’s disease. There’s nothing we can do for you.”
That began the journey of “what do I do?” They gave me the 36 Hour Day. A couple of sheets about what Alzheimer’s is clinically. That was it.
He stopped work the next day. He realized that he was potentially putting patients at risk. He said, “I'm never going back.” I was concerned that he'd fight the diagnosis but he didn't. He was very accepting.
I realized this neurologist was just horrible. I found him incredibly unprofessional -- and I’ve spent my career working with physicians.
I had probably the most unprofessional encounter with a physician I've ever had. And I've worked with physicians in my career. You know, all of a sudden you are in your mid-50s and you're told you have to find a neurologist that's a dementia specialist. When I was picking a pediatrician, I interviewed doctors. When we had to get him evaluated, I didn't have time to go and choose a doctor. So I changed neurologists and got a wonderful woman made all the difference.
I told everybody. I think part of what hinders Alzheimer's families is that nobody wants anybody else to know. I went the complete opposite way. I wanted everybody to know. I wanted them to know that we're gonna get through this. But also to educate people because nobody knows what to do. I always said, “if you have any questions, I want you to hear from me because I'm going through it.”
I'm fiercely independent. I have a hard time asking for help. A friend said to me, “people want to help you. So give them something they can do.” That was a really helpful comment. I realized I was going to need to do that. Like I would be at a dinner for work. My husband used to pick me up at the train. Now I’d ask a friend to pick me up. Or I’d ask a friend to take him for a walk or drop by and say hello or sit with him on the porch.
There were people who we could count on. Once a week, this person took him out for lunch. The men’s group did activities with him. I think that lesson, in addition to all the other logistical things that need to be sorted out, being able to sort of care for yourself and anticipate some of what you may need so that you can identify people who can support you. Get them on board to become part of that extended care family. You're going to need people for lots of different types of support. Sometimes on very short notice.
I had good friends, people in the church men's group who I’d call if something went wrong in the house they’d come help.
In the beginning, I called a couple people, friends of my mom's who had had a spouse with dementia. Bless them. But they were in their late 70s or 80s, so the parallels were zippo.
Financial and Legal Planning
Then I had to go through all of the paperwork to extract him from his medical practice. I had to get all of the legal papers together. Until that time, we had one of those divide and conquer relationships. He did most of the financial and the legal and the car stuff. I did most of the house and child raising and I worked full time. We had a good rhythm.
We already had a will. But, I had to amend those. Because, if something happened to me, it couldn't be my husband anymore. I have a dear friend who's a lawyer, and he helped me navigate the malpractice extrication. What's really a gift is he and his partners went back and looked at months of his work to make sure that they didn't miss anything. So they were totally on board with me.
I was asking how was I going to navigate work? Financially? What are the disability policies? I had to completely re-budget our whole life. I had to anticipate the care costs going up. I had no insurance coverage for his care from diagnosis on.
I had to get a financial assessment. We had 23 investment accounts. 23. I never knew if it was because he forgot what accounts we had or he was concerned that we didn't have one. You know he used to make Costco runs. We had 45 gallons of the same thing. 45 gallons. And later, I found stashes and stashes of Kleenex.
He quit his job right away -- at diagnosis - and then he unexpectedly had all this time. He read a lot of medical journals. I would say “this is an interesting article,” He would read them. He wouldn't remember them the next day. He read the newspaper. He read Popular Mechanics. There's a woman that was a retired physician and she would take him to Grand Rounds at the hospital. He loved that.
I tried to supply him with as much as I could. I would say in less than a year he didn't want to do that. People would say, “you're a doctor” and he’d say “No. I’m not a doctor.” It was a blessing that he didn't remember.
I would plan out his day. I'd say "well, why don't you do this tonight and try to do something that would take a period of time." Then I'd say something “why don't you go and look in a fridge and see if there's something that looks good for lunch? and I'll make it for you.” If he brought back an orange I’d say “ok! Great!” and I’d figure out how to make something with an orange.
When he would not come downstairs when I asked him to do something, I realized that he needed a companion when I went to work. I had somebody come by the house and hang out with him part of the day. He was also part of a wonderful men’s group at the church. There was a rotating time where they'd all pick him up and take him to a baseball game. I’d tell the man picking him up “don’t let go of him on the bus and keep talking to him. He’s going to drift in and out but just keep talking. Make sure he uses the restroom but you have to go with him.”
It got to the point where he couldn't really converse. He didn't make any sense. So I said to the guys in the men's group "Come into come in pairs.”
There was a family up the way that put out a note saying they needed somebody to walk their dog a couple times a day while they were at work. So I called him and I said, "I know you're looking for a high school student, but this would be great for my husband and you don’t have to pay him." So he walked the dogs.
He had boundless energy and most people couldn't tell that he had a problem. He’d go out walking. But, at some point, what is he gonna do all day? I would give him projects that I thought he could do. "Why don't you go out and rake the yard?" Anything that wasn't associative. I had no idea what the trajectory would be.
I read voraciously about everything I possibly could. I pulled every resource I could. Any article that I could find was clinical. Nothing was on caregiving. I found a couple of websites that were talking about respite care but nothing really practical. Someone told me it looks like there is a steady decline with sudden spikes. But people have an adaptive mechanism to adjust. People can maintain and adapt to a certain point and then they can’t and you see the drop.
He could still drive some. I worried about him, but he could still drive. I tried to not have him do that too much. But he would meet the group for lunch. And so he still had his social contacts.
Within the span of a year it got to the point where I said, if you're gonna go out for a walk, to take the phone. I got him a phone that had a tracker on it. If he didn't come home, I’d call the local police.
In my mind, you do the best you can given the resources. I fortunately found a marvelous place for him. I looked hard. I looked at the independent living facility where my mother had been. Wonderful place. But when I took my husband to tour he just stiffened. I don't care how many five stars it has, if he's not comfortable it's not going to happen. So every place I went, I would research it a lot but then I’d see how he reacted. I think that’s part of knowing the person and letting them dictate as much as possible, even if it's not verbal and it's reading the body language.
The decision was really pretty clear for me. I had somebody coming in during the day. It became harder and harder for him to have a different care provider every day. So I worked with a wonderful agency that was usually pretty good. Then people's cars would break down and I’d be on my way to work and hear that we didn’t have coverage and I’d have to turn around. Or, someone new would show up and my husband didn't know them and he’d be quite fearful.
That happened enough times that he was upset by it. A couple of times, I came home, and I'd say “What have you guys been doing?” And they'd been sitting on the sofa watching TV. I was worried about socialization. I was worried about his activity level. He was becoming more and more stranger-adverse. So that's when I started investigating out of home care.
The agency was trying to do their best, but the logistics are hard. Fairly often, some part of the plan for the day wouldn't happen and it would take a lot of time and energy and stress to make sure he was watched after. And that care was really expensive.
We thought “if he is not thriving, then we have to find something else. “ And, at that point, it was hard for his friends to take him somewhere.
So we started in assisted living at a place with five levels of care. This place was brilliantly run. They titrated the care based on your skills and needs and they would adjust accordingly. He was there for a while. But then he wandered out in the middle of a stormy stormy night. There was really strong wind and it was cold and he got out of the building and they locked the door. He was out all night in a t-shirt. He didn't have the skills to get himself back in. The medical director found him there. It was Christmas Eve. We moved him into memory care the next day.
He had a real routine in assisted living so uprooting him was incredibly stressful. The doctor had to give him medicine to calm him down. We had to physically move him. He became completely disoriented. He didn't know anyone, I knew I could not stay the whole night. The guys in the men's group came and helped me move. There was a woman that was the activity director for the assisted living. She checked in on him for a couple days. Because he recognized her Yeah. The staff really was brilliant with him. But that was hard.
I'm a big problem solver. I applied a lot of what I did with child raising. When he got anxious, I'd make him laugh. When he became agitated, I’d say “look at me, I'm not going anywhere. We're gonna get through this together.” I sat down after it was diagnosed, and I said, “we've been dealt a blow. But I am like gum on the bottom of your shoe. We're in this together. I am quitting on you now. So forget that." And he was really relieved that I said that. Because I think he was concerned. He didn’t want to be alone. I reminded him ”I'm right here.”
He really would be kind of cross. That was very stressful. But I thought, “don't assume the worst. Let's deal with it the way it comes." My philosophy is, “whatever happens, be creative on how to respond to it. And most of all, reassure him that it's going to be okay." If you don’t know say “well, now you're really stumped me. I don't know what to do about that. What do you think we should do? We'll figure this out, won't we?” And just try to have some grace for him.
My husband was my life partner. We were together for over four decades. I knew him inside and out. So that made it easier. But I think it's harder when it's a parent because there is the dynamic that the parent is supposed to be taking care of the kid. I'm terrified of getting COVID because it would require my son to compromise his life to take care of me. It's the parent child thing. You have to learn what resources are available. Not necessarily written. But what people are available for you. I found I reached out to people who surprised me. People who were good for my soul. And my relationship with my sons and their partners were so important. They understood. We could laugh and we could cry. We were at an ice cream shop once and my husband made an off the wall comment and we got the giggles. It was just so bizarre. A few years ago that would have scared us but at that moment it was deeply funny.