Wife, Marketing Professional, Adventurous Traveler, & Caregiver
Caregiver
Age: Early 60s
Care Role: Primary caregiver. Lives with Loved One.
Loved One
Relationship: Husband
Age: Mid 60s
Diagnosis: Early Onset Alzheimer's
Progression: Lives at home. Diagnosed this year; noticed signs 6 years ago. Carries gene.
Continues to do basic carpentry.
Early Signs
3 years ago I started keeping notes because I was afraid my husband had Alzheimer’s. He was 62 then and I had been noticing changes since he was 59. I didn’t want to push him to go to the doctor because I was afraid he’d lose purpose. And, since there is no cure, I didn’t know the purpose of diagnosis.
In the summer of 2017, we travelled to Europe, to a place we had never been. He was tired and he became very confused. He said “why did we go here? I have been here many times.” I told him “no Babe you have never been here.” He was so upset with me because I didn’t believe him. We had picked this destination on purpose because neither of us had ever been there. I got really concerned. The next day he couldn’t remember the conversation. He seemed to be ok after that until we got to the next destination. He woke up screaming one night not knowing where he was. When I reminded him where we were, he calmed down and was fine the rest of the trip. I was so scared for him and for me.
At Thanksgiving my father passed away and I told my husband I had to go out for a run to process my sorrow. In the middle of the run, he came driving behind and yelled at me that I hadn’t told him where I was going and he was worried. I just looked at him and said nothing. The next week, I traveled alone for my dad’s funeral. He was lonely and told me he would die if I ever left him.
By Christmas that year he had no short-term memory. He could not retain any new information. I started making notes for him. Two weeks later he was stressed and angry. He was angry at me and told me I should just shut up. He would sit on the couch for hours at a time staring into space. His son was having some challenges at that time I. My husband was trying to figure out what he could do but he was stressed and crying. He couldn’t remember what had happened.
He began asking me 15 times a day – I counted – what time of day it is or what day it is. I didn’t want him to feel bad so I just answered. I bought a dementia clock. He loved it and he asked me the day and time less frequently.
That spring when my sister came to visit she quickly realized that he had no short-term memory.
One day that summer, he accidentally took his ADHD and Gout medicine and vitamins twice in one day because he didn’t remember that he took them. I was frightened that he might poison himself. He acted so strangely. I bought him a medication dispenser with a lock so medicine could only be dispensed once a day. He loved it.
By that July, he was sleeping 10-12 hours a day, not including naps. He had lost weight. He would cry all the time and he seemed paranoid. Four or five times a night he would walk around and check all the doors. He seemed afraid. When I got home from work, all the doors would be locked and I’d have to knock until he let me in.
At a dentist appointment that summer, I noticed he got his birthday wrong. He blew up when I noted the mistake but then he gave me the form to fill out. He would have difficulty finding the right words for a sentence. He would stop in the middle of a sentence and not remember the correct words to use. I tried to help without trying to make him feel bad. I was worried if he realized he had dementia he would give up on life.
Getting a Diagnosis
That summer, all I could do was think about dementia. I knew I needed a plan.
At Thanksgiving he was sad. I tried to reassure him that he is safe. The doctor wanted him to have an MRI, but we decided not to get one because we were scared about having a diagnosis.
I was packing to get us ready for a trip we were going on and he asked me what I was doing. He had spent the whole morning getting ready and packing but he forgot. Then he was sad that he forgot. I explained it a few more times. It is overwhelming to think for two people. We were headed to Europe and I figured this might be his last trip overseas. But I was so frightened. At that point he regularly had night terrors. He woke up screaming in the middle of the night. I would wake up with my heart in overdrive and couldn’t settle back down for hours. As soon as he woke up he would turn over and fall back asleep with no memory of it the following day. When we landed in Europe, he was hallucinating. He couldn’t calm down. Eventually I gave him Klonopin and he eventually fell asleep. We would stay in our room till 1 every day, I didn’t want to put him. We would go out of the room for 4 hours a day.
He started to withdraw from conversation. He was quiet. He would repeat the same thing over and over. I began to deeply miss intelligent conversation. I tried to keep sentences short so he could register what I said. If he had a blank stare, I’d try again to say it again.
When we got home, the night terrors continued. He would scream violently. He was scared but not awake. After five minutes, I would get him to calm down, fall asleep, and forget. I stopped telling him what happened, it only upset him and he couldn’t do anything about it.
By December, over two years since I started taking notes, the doctor told my husband to get an MRI. He was so upset he cried all day. I decided to not push him on the testing. By that spring, he was regularly waking up confused. Sometimes he didn’t know where he was. By this point, the doctor had prescribed Buspar and Concerta.
We were considering going on vacation that spring and I wondered if we should go. He kept forgetting where he was and he would get so scared. I wondered if something else was wrong. He was throwing up. I debated if a trip was a good idea or not. I wanted him to enjoy as much life as possible. We went to Florida. He stayed inside and watched TV. If he took a nap he woke up thinking it was the next day. He kept asking if it will be “cold tomorrow.” I was worried if he realized he was sick he would give up or commit suicide.
In July of 2019, two years after I started keeping notes on him, five years after I started to notice a problem, Ron was diagnosed. It's Early Onset Alzheimer’s. He scored a 16/30 on the MOCA Test. His MRI showed shrinkage of the hippocampus. I had been suspicious for so long but I was devastated.
By the New Year, early this year, the slightest change in his routine sent him into a tailspin. He forgot my birthday. He seemed to have no sense of time or date or season. He really progressed. He couldn’t get dressed without me giving him clothes to wear. He confused me with his ex-wife. He would go to bed at 7pm and get upset if I didn’t. He forgot his grandchildren’s names. He constantly complained he was dizzy. He couldn’t follow most TV shows.
Telling People
We make no secret of the fact that my husband has Alzheimer’s. I think that is the biggest mistake people are making. It's not his fault. It's not his fault that he has a terminal illness. It's not his fault that so much is being taken away from him.
If my husband did something odd or maybe socially unacceptable and I kept that a secret, I don't think that is right. Keeping it a secret does not educate people about a disease. At work now, everybody knows. So if I have to leave work because he has a meltdown, I go home. I make no secret out of that. What do you do?
If we are in public and he does something odd, I have a card in my wallet that I made that explains the problem.
Activities
Three and a half years after symptoms began, I noticed he wasn’t doing anything. Sometimes I would come home from work and it would look like he had done nothing all day. I thought in his mind he did a lot. If I asked him to do something, we would get in an argument – why he doesn’t want to do it or can’t do it. It drove me nuts. I started to do most things myself. I mowed the lawn while he slept. But then he got upset at me for doing it. He was so difficult and I could see his personality changing.
He was taking things apart at home and then he couldn’t figure out how to put them back together. Everything in our house was broken. I worried all the time. He had no idea. I missed him so much. I miss him. I felt lonely. He couldn’t follow TV shows anymore. He wasn’t sure what the weather was and what clothes to wear.
He would mow the lawn multiple times in a day.
Four years after symptoms began, I found that If I kept a consistent schedule for him he was not quite as confused. A routine worked best for him. We always ate dinner at 5:30 and each had our assigned seat. One night he sat down in my seat and started eating from my plate. He forgot the code to his phone, his birthday, even though he used that code many many times a day. He started to become insecure in his abilities. But his kids didn’t seem to notice. They would ask for rides, when I was nervous that he should be driving anymore.
Four years after symptoms started, I bought him a cheap birdhouse that needed to be glued, nailed and painted. I thought that would give him something to do instead of watching TV. He couldn’t do it. He worked on it for 2 days and simply couldn’t figure out how to put it together. I was so scared for him and my heart hurt. I showed him how to do it and had it done in 30 minutes.
We are catholic. I have been working on finding him tools where he can’t hurt himself. He is making crosses as gifts. We can cut wood and make a cross. We did alcohol paint painting together.
We loved to travel. Even when we couldn't travel far, we even just drove to see another town close to us. Now, during COVID, every Friday we pack a lunch and bring the dogs and drive somewhere. We can drive for a few minutes and he thinks that it's hours.
The dogs are his purpose. We had three. One of them died. It was awful. Losing her set him back a lot.
Driving
I’d say every three months we still have an argument about him not driving. He’ll say he has to go here or there. And I’ll say his companion can drive him anywhere he wants to go and he will get agitated. I say “the doctor said you can’t drive but if you want to go take a driving test, let's do that next week.” That always works. He cries. But then he'll forget about it for the next three months.
After the 911 call, when I felt that he really needed someone with him all the time, I said the doctor says it's not a good idea for you to drive. I’ve always been the drive. Earlier in our relationship we realized that we drove so differently and we fought all the time about it so one day he said -- ok you just drive all the time!
Ok try to thing “ok, if that was me, I’d be livid too. So I ask myself ‘how would i understand it?’” So think about how I’d process it then I try to take it slower to really understand where he is coming from.
Personal Care and Day-to-Day Stuff
Five years after symptoms began, he woke me up in the middle of the night asking me where he was. He thought he had done something bad. I assured him he was ok. He started wearing his street clothes to bed. When I tried to get him to change – I didn’t want him wearing the shirt that he had been outside in all day – he told me he wasn’t wearing street clothes and told me I am a terrible person. I realized I needed to become a better communicator. A simple statement could set him off and cause anger that I had to deal with for hours. At that moment, I just put headphones on and ignored it. I knew the stress was getting to him but it was getting to me.
By the fall, October 2020, I felt thought we were at stage 5 – moderate severe Alzheimer. COVID has been rough. The isolation makes everything worse. Alzheimer’s is the most horrible experience. Sometimes he wouldn’t know who I am. He would say random things that make no sense. He would have false memories. He didn't know the names of his grandchildren. I would whisper the names to him when he talked to the kids so he wouldn’t scare them. He still remembered his daughter. By this fall, he could no longer shower by himself. So, I sit next to him and point to the shampoo and tell him to put it on his head, next put the soap in his hand and tell him where to wash. I tell him what to wear to bed. We go to bed at 8pm. I have to go with him because he is scared. He sees things that aren’t there. I am depressed.
Now, my husband won't change his clothes. He wants to wear the same clothes to bed that he wore outside. We both have terrible pollen allergies. In the beginning I fought him about changing his clothes unsuccessfully. But then I said “if you go to bed with that shirt on you might have a bad allergy.” He went and changed immediately. I have to imagine what he understands and give him information he needs to make a decision.
Paid Help
I am fortunate to have someone to take care of him now while I am at work. I never have any time to myself. I get up at 4:30 so I can workout before I go to work.
One morning, he was acting like he was drunk. He was making these horrible noises that I can’t describe. I thought he was dying. I called 911. He didn’t have a diagnosis then but I knew what was going on. His mother had Alzheimer’s and I later learned he carried the gene. His mother lived with us for 6 months but eventually moved to a nursing home. We both had jobs. At the hospital he was confused. They referred him to a neurologist and they did a CT scan and saw the atrophy that day. At that point, I already knew he was not eating. So I said “Listen babe, I have this friend and she is going to bring dinner by because you have so much work to do around the house. I feel like such a liar, but I have to help him be and feel safe. He was very receptive to having a friend stop by, he just didn't know I was paying here. I went through about five or six aides. It cost me about $3200/ month just for the aide. I went through an agency -- but it's hard to find someone who truly cares. I don't want someone says “it's my job to put the sandwich in front of you.” He needs to be engaged. The less engaged he is the more frustrated he gets, the sadder he gets, the depression sets in -- because he knows he can’t do anything. So the first aides lasted three or four days. And, if he didnt like them, it wasn't going to work. At one point they sent me an 82 year old woman. Lovely. But the man walks 6 miles a day -- she wasn't going to work.
Before a companion started, I wrote down his full day. I wrote when he likes to do things. I wrote when he typically goes to the bathroom. I wrote down his likes and his dislikes. I wrote he likes stevia and his coffee and this much milk. I wrote, when he says his hands hurt that's because he has arthritis and here is what to do. I told her why he had arthritis -- about his thirty years in the armed services - so she knew his life story.
Then when she started, I took two weeks off work. The companion came with me and my husband wherever we went, so he saw her as a friend. My husband got comfortable with her and she got a sense of who he was and what mattered to him.
Caregiver Health
As we waited to get diagnosed, I was so scared. I couldn’t sleep. I took muscle relaxers because of the stress. I couldn’t focus at work. My jaw hurt. Some days I wanted to run away. I was lucky to have a few people – my siblings – that kept me above water. I knew I needed a plan. I knew I could no longer leave him alone while I went to work. It is so extremely difficult to think for 2 people. I didn’t know how fast the disease would progress with him – he could stay where he was or it could accelerate.
It's so lonely. I have no one to talk to. I sit on the couch and I want to have a conversation, a real conversation.
Caregiver Approach
I’ve grown a lot as a caregiver. Some of it is trial and error. I decided early on - when I knew I was coming -- to educate myself. I can go to the Alzheimer’s Association and read all the generic stuff but I want to know how Rebecca is dealing with it, how Susan is dealing with it. Not some person who hasn't been through it. So I try to find Alzheimer’s stories. I am always trying to figure out -- how are these people doing it? What is it going to look like? I want to envision what is ahead of me.
Anxiety, Mood, Agitation and Aggression
He's a happy guy. The other day we were out in the boonies. We had walked three miles. He said “I can't walk anymore. I just can’t walk anymore.” He was very agitated and there was no one around. I didn't know if there was a malfunction in his brain that told him he couldn't walk anymore. I thought I was going to have a breakdown. I thought “we are three miles from home, no one is around, we have two dogs with us, what the hell am I going to do?” Fortunately, I had cell reception. I said to myself “think, think.” I asked him “what hurts?” he could tell me. He was very agitated. So I said let's sit down. So I took off the backpack and we sat down and I gave him a sandwich and some water and we sat for an hour. Then I said “it looks like the sun is going to set, we should start back.” And he said “let’s go.” And we got up and walked back. I was so scared though. Because you are responsible for this human. Now, I need to cut our walks shorter.