Shannon

Wife, Mom, Office Manager, & Caregiver

Caregiver

Age: Early 60s

Care Role: Primary caregiver. Lived with Loved One.

Loved One

Relationship: Husband

Age: Mid 60s

Diagnosis: Early Onset Alzheimer’s

Progression: Lived at home with his wife until last several weeks. Passed away after diagnosis.

Early Signs

My husband owned his own business. He was in the trades. He stayed home from work one time in our 25 years of marriage.

My husband had incredible luck with cards. At my son’s graduation party, we were playing cards. Every time he put down his cards, he had a dynamite hand but he couldn't figure out how to go out. It was the first time I noticed it. Looking back, I had noticed things before. If I asked him to paint a wall -- he loved doing that -- he just spattered all over the walk. I thought he was lazy but it was Alzheimer’s. He was befuddled.

Driving at night was just huge for him. At the beginning, it affected his eyesight first. He chalked it up to welding, but it was Alzheimer's taking his eyesight.

Getting a Diagnosis

We went to the primary care doctor. He did the qualifying tests - the clock test, etc. We got referred to the big academic hospital for a neuropsychology evaluation. My husband wasn’t from the US and his accent kept him isolated and we saw that play out in the tests. The nurse and the doctor said the tests were borderline but they knew it was Alzheimer’s.

I thought we weren't as far along as we were. I said to my husband I said “you gotta keep it together until these kids are out of college. Then we'll focus on you.” We bought all the over the counter stuff. We bought the prescribed medications. But, his bravado. He never took the pills. He was fit. A 32 inch waist his whole life. He ate the Mediterranean diet. He ran. If you told him something was healthy, he would do that. He thought he was healthy and he didn't think he needed pills. The neurologist “ that [not taking pills] bumps you from any sort of trial.

People don’t tell you that the neurologists are great for diagnosis and charting where you are at. But the geriatric psychiatrist was critical when things got bad. People don't even know they exist.

Telling People

We didn't tell the kids right off the bat. Maybe 6 months in. I told the police right away. I filled out a form at the police station so they knew who he was and where to bring him if they found him.

My husband had a tight community of immigrants from his home county. My sons would go to the community center and play soccer. It was a great reprieve for me, because on Sundays the boys would take him to the cultural center. Everyone there looked out for him.

Finance and Legal Planning

My husband and I kept our finances separate. When my husband was diagnosed, we immediately got his legal and financial affairs in order. I got Power of Attorney.

I didn't have a career job. I raised my kids. I'm not a saver. I told him “I’ll tell you how much my bills are and you pay me each week. Then you keep the rest of the money.” I thought he was going to save everything. He was working and I never paid attention to finances. When he got sick, I realized there was no money. So, all of a sudden, I am back in the workforce at entry level.

I met with a lawyer. He said “ you're going to have to spend down, you have to buy yourself a new car, fix your roof.” I said “this makes no sense. I don’t want a new car. It was frivolous. They wanted you to spend down so you qualified. Thank goodness for the Affordable Care Act.

I had to take my retirement money and pay taxes . I went to see a second lawyer. She said to me “there's nothing you can do. Don't spend the money on me. Make sure you have the paperwork.” She said no judge was going to penalize me. The other lawyers were being very judicious and you have to do it to the nth degree. We didn't need it.

When he got very sick and he got paranoid and aggressive, I went to another lawyer because it was very unsafe for him to be by himself at home. Again they wanted me to spend down and spend a ton of money. I couldn't send him to the cultural center, because if he got in a fist fight he’d be expelled. So I rearranged my worked schedule. I got in at 4AM and left by 8AM, when my son went to work.

The financial impacts are just huge and it shouldn't be a life changing financial event for families.

Activities

He was a pacer. I would set him up for success by giving him a rake. He’d rake and then lose focus. He’d use the electric kettle to make himself tea and forget that he’d made it. He craved sugar. I got these huge packages of blueberry muffins without paper on them -- because he’d have eaten the paper. I’d watch him on the video monitor -- he’d drink tea, eat a muffin, put the mug down and then repeat the process 10 minutes later. When I was cooking dinner at night, I’d find dirty mugs on every shelf.

Once I realized that I could do the same thing over and over and over again. I was fine with it. I was always searching for a program on the television that he'd enjoy. When I realized he would watch my rom coms, we just watched that.

My husband hated doing errands. I had to get a handicap placard, park in the front of the store, and keep an eye on him. He just wanted to be home and pace.

Driving

He never had a problem getting in the car when I was driving. Since he wasn't from the US, I has always driven.

First, he stopped driving at night. We had a habit of picking up donations on a Saturday night and delivering them on Sunday mornings. I used to send him on his own. When the kids were in college I said, we'll make it a date. He almost killed us. His driving was awful.

So, when he stopped working. He stayed at home. I took the keys. He said “I need my keys.” I said “I don't know where they are.” He would spend the afternoon looking for his keys or forgetting that he was looking and start the whole thing over again. I never let on. One time my son put his keys down one the kitchen counter and I said “you can't do that.” A neighbor said “You husband is about to pull away.” I ran out and he was upset that I wouldn't let him drive. We got into a fight. I said “Life is cruel. You have a cruel disease. Our son can’t have peanut butter. It's just the cards we are dealt.” Most times he kept looking and didn’t get angry. That time he was angry but he finally calmed down.

Wandering

I had to dig into our retirement. I couldn't afford daycare. I couldn't afford to have people babysit. I installed cameras everywhere and I went to work. My husband was a runner. He continued to run and walk. He got lost a lot. I had trackers on him. I use two different things. Once the police called, he had been 30 miles away. He had walked. The cop said “he had to have gotten on a bus.” But I checked the tracker. He walked. Once he started he’d just go in a line.

The minute he was diagnosed, I went to the police and filled out a form so they knew who he was and where we lived. They would pick him and bring him home. Sometimes they’d check to see if the house was safe.

I had a wristwatch on him. I told him that one of the boys bought it for him as a gift and said “you're gonna hurt their feelings yeah.” So he wore it. And, I had a pod tracker that I put in his pocket every day. He said “I don’t need that.” I said “well then your, your cell phone won't work. It's the new technology.” And he just let me put it in his pocket.

When we lost him -- and we've lost him three times -- we got the watch that the cops are the only ones that could tap into. The cops could call this company and they would pinpoint where he was.

He would wear it in the shower. Which was good, because the two times we lost him after that my boys were home. He just slipped out. But the minute he was coming or going, I’d get a ding on my phone. I could call him and I could hear him talking. He was talking to the police who brought him home. It often was an officer I’d met before.

We had the cameras and my kids were in and out. They stayed close for college, so they’d be in and out during the week and weekend. He was alone for very little time. And he wasn't upset about it; he had no concept of time.

Final Stages

I know people now use three stages, rather than 7. I’m not sure what’s right. But I’d say we never got to Stage 7. My husband was Stage 6 for four months before he passed. Prior to diagnosis my husband was the poster child for healthy living. Once sick, he was filled with anxiety and he ate a ton of sugar. I let him have some alcohol earlier in his disease, but once he was further along it didn't feel appropriate.

When my husband was sundowning he’d tell me he was leaving. We had been married for 25 years, but he’d say “you are a very nice woman but I don't want to get married.”

It was happening. A little bit all along. I just didn't put one to one together. But a year ago, several months before he died, he would follow me around the house. I thought he was just pacing and lurking. I’d say “dude back up! I gotta get ready for work.” It was paranoia. He said “I don't know who you are or what you want but I want you out of my house.” I said “you got to get some rest: Then when my boys were home, he accused me of sleeping with them. That was super uncomfortable. Super uncomfortable. It was so inappropriate. My kids just were shocked. I didn't want them to have that shock. He was off the rails. We increased the Seroquel and it didn't help.

I called the neurologist. I thought he would up the dose in Seroquel. But he said “you need to go to the hospital right now.” I thought this was protocol and they’d up with does of Seroquel at the hospital. At the ER, I explained what was happening and they put guards near him. I said to them “I don't wan’t it to be scary for him.” And they said “no, he’ll have a separate room.” And when we got to the ward, the social worker said “I need to speak to you outside the room.” So we are chatting and the alarms go off. I said “we better get back.” He had started beating up an old man because he thought I walked away. They dosed him. It was horrific. It was like watching a wild animal be darted, until he finally calmed down. He was in the hospital for three weeks.

They put him on a megadose of Haldol. They said the Seroquel wasn't enough. They had to break the cycle. The paranoia. He became aggressive. He was scared. He was in a fight. It was self-defense.

They started weaning back. I had brought in a stuffed animal that look like our dog. And he was saying to me he goes, "Oh my goodness I thought this was Cupcake. " The boys and I were there every day.

He left the hospital on a Thursday. On Sunday he stopped eating. He came home. I couldn't get him to eat sweets. I liquefied porridge with sugar. He had no desire. He had always drunk tea with milk and sugar and now he couldn't take the milk. So that was his plight.

The psychiatrist at the hospital there turned me on to the geriatric psychiatrists. We saw the geriatric psychiatrist right after we left the hospital. It was a special cocktail that they hoped would regulate his mood and help his appetite. Then they put him on hospice.

I kept thinking to myself, how am I going to keep him on hospice. He's going to he's going to outlive his covered three months . He didn't last three weeks. His body started to crumble. He was standing one day while using the toilet, and he just crumbled. He took a lot of those little dings.

In the end, hospice said “two weeks.” Then the next said “couple of days.” Then one day they said “a few hours.” My husband would have 1-2 cups of tea a day and some broth for the last several weeks. He could only take liquid medication. When apnea started and he stopped swallowing, hospice said two weeks but he lasted four days.

Hospice was really a guide for me. They gave me permission to let my husband sleep, permission to let my husband eat ice cream for breakfast, permission to let him comfortably transition.

Caregiver Health

I don't want to get political. My husband was from a country where health insurance was part of your life. We do it all wrong here, systemically people are isolated. There could be someone across the street and I don't know they're dealing with the same thing as me. Where he came from there was only one convalescent home for patients. You know for early onset but even for women in their 70s and their 80s -- they're trying to lug a big man around and clean poop. They are physically dying from this.

You constantly beat yourself up because you are isolated. You're in that home. You're just not around anybody else with it. If we as a society or as a community, if there was an infrastructure in place, it would be so much better. How do we have a dog park but yet we don't have a place for people with Alzheimer’s.

Caregiving Approach

I never asked anything out of his comfort zone. Some people say “ I lost it, he wouldn't get in the shower.” I never pressed it. He wanted to walk around with smelly teeth, so be it. In the beginning I said “you need to take a shower there's a rank odor off you.” He said “that's not nice.” I said “you know what, you're right it's not.”

I found that when you have to pull away the car keys or power tools, do it when he’s not around. Avoid confrontation. I never told my husband that I did things. I locked all the tools, the lawnmower in the shed and kept the keys. When he asked for the keys, I told him he was the last one to have it. He’d putter around looking for it but never get upset. We never had a big confrontation.

I tried to take my husband’s lead as much as possible. There are some things -- hygiene, manic rants, paranoia - that the caregiver has to take the lead on. I also had to protect my children, who were still in the house.

Every day, no matter what it is, I wish I'd done it differently. It would have been a different outcome, right? I don’t know if that’s a problem. But we aren't nurses. We aren’t a nurse’s aide. If someone says “ I had a fit. He needs to get in the shower.” I get that. She wants him to shower. She wants to see him fresh. That’s her man.

A couple of times, I was at my wit's end with his taking off, wandering. I went down to the senior center near us. They couldn’t help us because he had early onset. You know, people are juggling everything, they are being the best caretaker they can be. That’s ok. We beat ourselves up non stop. There's no reason to. If I wanted to be a nurse, I would have gone to nursing school.

The thing I know I did right? My kids came out really healthy.

My experience is monumental blow up is usually followed by a decline or a negative pattern. I found psychiatrists to be helpful in those moments.