June 2018   

Caring for a Mom with Alzheimer’s Disease 

Many of us have been fortunate to cross paths with Joanna Hurley. She is the wife of our founding attorney, Miles Hurley, and she plays many vital roles in running Hurley Elder Care Law. Maybe you have connected with her at networking events, learned from her at seminars, or talked to her on the phone when calling our office with questions about Medicaid, guardianship or estate planning. 

She is a generous, sincere, present-minded spirit filled with a deep understanding of the complexities of families, organizations, and communities.  Beyond her knowledge and skills, Joanna offers a shared experience as an adult child caregiver. This month, Joanna is sharing the story of her mother, Pamela Morris, and their journey.  Joanna, along with her sister Louise Morris (another amazing woman working at Hurley Elder Care Law) and her husband Miles Hurley, cared for her mother from her Alzheimer diagnosis at age 67 to her death in 2015.  This is Joanna’s story:

We were really a small family—just mom, dad, my sister, and me. My parents moved to the US in 1969 from England. No cousins around, grandparents far afield; and there was no way possible to save enough money to be able to put four people on an airplane, so we would only get visits from my grandparents sporadically. There was a close bond between our parents, my sister and myself because that was all we had. My mother and I had a good relationship. We were a lot alike, and so we butted heads a lot (and I didn’t acquiesce); but I was always in awe of how strong she was. She kept two kids together and managed to make a life with my father so far away from everything she knew and loved.  This was especially noteworthy since my parents didn’t have the world’s best marriage; she managed to save her marriage time and time again (not necessarily because she wanted to but because she felt that she didn’t have much choice, because she was so alone). They never had any money--whenever they had two pennies they spent them--and there was nobody else, so she eventually found peace with dad and her situation. She was a complicated and a very, very strong lady.

After high school, I left for college and never went back home. Life took me overseas and then to New York before it finally landed me back in Atlanta and married Miles.  During that time, I only had inconsistent contact with my parents. It wasn’t until I had children of my own that I started having daily contacts with them.  My mom and dad really took to their roles as grandparents. I was working full time, and my mom stepped in as a nanny caregiver for our oldest son Peter. It was a joyful relationship. I believe that who he is, is a testament to my mother. She trusted his competency and saw him as an intelligent human being. When I was pregnant with our third child, I had a difficult pregnancy, and my parents made the amazing, most generous move into our home to take care of me. At the same time, they decided to sell their own home and move closer to town, close to us. So that subjugation of their wishes and desires to accommodate their children was the example that was set, and that was my mother through and through. She put family ahead of everything--and that was for Louise, dad and me. We took it all for granted, that they would do all these things. We were grateful, but we just knew they would do this because that’s who they were. 

When I started to notice there was something going on, it was probably not my finest hour. My mom was 66, and I noticed that her behaviors were becoming more acute.  She became the world’s biggest snob for no reason. She thought that she was just one step below the Queen--that’s the way she acted. She would make these ridiculous references about things she knew nothing about and began saying things like, “I don’t recall meeting her,” or “I’ll check my schedule.” I’d call, and she’d immediately hand the phone over to my dad saying, “He’ll sort it out.” Dad never sorts things out; he just does what he’s told.  I’d have these frustrations that she’s just not herself. When someone mentioned Alzheimer’s to us – I can’t even begin to tell you what I thought. At first I didn’t believe it. Louise and I began to start looking for other causes. She was on a statin; there was talk of statins affecting the memory, so we took her off the statin thinking that might solve the problem. Guess what – it did not. Her cholesterol started to rise, and so we put her back on the statin. She had a lot of reflux issues with Prilosec, so we took her off of it. Didn’t solve the problem, she got more reflux. Here we were, two people who are not doctors reading stuff on Web MD and mucking around with her medications thinking that would solve the problem. We were looking for a miracle fix and that one day she would wake up and be different—that it would all go back to normal.

I know we should have known better—we’re in elder law, helping so many others with these issues. We’re supposed to know everything about this, we have access to all the experts, and we walk this journey daily with other families. But it was so different when it was our own family. We didn’t think much about dad--which we should have. Dad was still working full time, and he didn’t want to admit that there was anything wrong or that it would ever get any worse. He wanted to live his life as he was living his life; he didn’t want to not take her to the symphony and not go on vacations. I remember him telling me about the first time it even dawned on him that it was going to get bad. They were on a cruise—they had been determined to still go on a cruise—and although mom was able to put her makeup and clothes on and he could take her around, she threw a fit about attending the on-ship party for the NCAA finals. This was the first behavior issue, and it really shook dad.  

I don’t know that it even sunk into me then--that she was going to get bad. I was focused on my three small kids, marriage, and the family business. Trying to find a space to worry about mom wasn’t the first thing I chose to worry about. I chose to compartmentalize things. I knew my mother would want me to put my children first; of course, that didn’t help my sister who took on the bulk of my mother’s care. And as mom’s disease progressed, dad became more dependent on my sister and me, more dependent on friends. Basically, from his first realization that things were going to get hard, my father abdicated virtually all decision-making to Louise and me who effectively abdicated to Miles when it came to the big stuff.

As we went on this journey with mom, we moved from home to home with assisted care to an assisted living community to an inpatient psychiatric hospital and finally to a nursing home. And we were so lucky, compared to so many families, having professionals there within our grasp who we could call upon not only for their opinion of a situation but also to advocate for us.  They also helped us reinforce right thinking and to tamp down bad thinking.  Even elder care professionals like us need to be surrounded by a team of other professionals when dealing with a diagnosis like this. We were fortunate to have access to their knowledge and experience because a lot of people don’t get that; they must rely on their own instincts and just the snippets of insights they get from rehab stays when they get access to social workers or hospital stays with access to care managers.  Having a team of other professionals helped us from making poor, emotional decisions that would have been financially detrimental to dad in the long run and to mom’s comfort and safety.  Like most families dealing with dementia, we had to make some hard calls; and we were so fortunate to have others around us that cared about mom and about our journey. I am still in contact with some of mom’s caregivers, and they still feel her loss as acutely as I do.  

On my parents’ 53^rd wedding anniversary, Louise and I went to see her at the inpatient psychiatric hospital. It was the most awful thing I’ve seen in my life. We tried so hard to maintain her normalcy. Her appearance had always been so important to her, so we paid extra attention to her hair, nails, makeup, and clothes; but at the hospital that day it finally hit me that she was truly not herself anymore.  When she got to the nursing home, that’s when all the wheels fell off the bus. Her hair went, I didn’t realize she had so much gray hair – I had no idea. I used to go visit her on Fridays and always bring her something because I felt like that gave our visits some purpose. I’d bring her a muffin, a coffee, or a milkshake; and visiting her never got easier.  I hated seeing her behaviors; I hated seeing how much of her we had lost. I hated that she would pick at her face – I hated it. And I’d do anything not to get mad about it. Stop it, stop it, reminding myself again and again….she can’t help herself.  I became so angry--so angry because it should never have been her. She kept it all together when it was bad in our lives growing up. She was so strong, so how could this have gotten her? I’m still mad about it--this is one emotion I can’t get rid of. It’s just so not fair. My children will never know how great she was, especially the two younger ones. They always knew her as being sick. They will never know how amazing she was. I am also mad that her illness took 10 years of my sister’s life. Louise was mom’s primary caregiver. The whole situation was not fair—dementia never is; and that’s what I can’t get past.  When she died I was grateful and glad. I shouldn’t say that, but I’m relieved that it’s over. Relieved it was over for my dad, my sister, myself but mostly glad it was over for her.  This strong woman could be whole again, had her dignity, had control.   

When mom moved to the nursing home, Miles decided to build a house for my father to live in at our home because he’s never lived by himself – never. He went from living with his parents to living as a married man and a year later he had a child. So now he lives with us, and I am so grateful to Miles for his remarkable generosity and thoughtfulness. My dad is not his dad or his family—he didn’t have to do this, but he did because it was the right thing for my dad. 

Sometimes I wake up and think she’ll be back. I’m scared sometimes that I’ll get it; it’s hereditary. It has really informed my thought about quality of life. No one who has gone through this journey doesn’t have some form of change. Now in my work at the firm, as I talk to other family caregivers and tell my story, I try to let others know that they can’t fix it all. Don’t put your life on hold to try to fix it all – but keep them safe and help them get the best care.