Ask a Psychologist: My Parent Has Dementia

How to support your family, while supporting yourself

Q: My fiancé and I had planned for a long two-year engagement to save money for our wedding and to alleviate stress, as we both had started new jobs at the time. We are almost one year into our engagement, and I’ve finally gotten to planning. I’d already booked our venue; I’ve had it booked for seven months now in over-preparation. It was the only venue we saw in the city where we met and live. It’s a perfect reflection of us: rustic, casual, natural, intimate, and plenty of possibilities for a really fun event, which is what I want.

Over the past year, we’d begun to notice changes in my mom. Subtle at first, and then she would say or do things that left us confused. I live six hours away from my parents, so I mostly just heard stories from my sister, dad, and grandparents on what she was doing. She became withdrawn and not interested in anything, really; she didn’t want to talk to me on the phone. I felt a little abandoned, angry, hurt… every emotion. And then I let it go and figured she just wasn’t interested in a great relationship anymore. When she discontinued her regular daily activities like cleaning, cooking, laundry—even combing her hair—my dad had her see a doctor, who referred her to a neurologist.

I found out this past week that she has been suffering from a rare form of dementia called FTD, or Pick’s Disease. This disease is often confused with Alzheimer’s, but it acts in very different ways. Starting in the front of the brain, it targets behavior, personality, language, and communication—and basically the ability to plan and organize. As the disease progresses it is difficult to distinguish it from other forms of dementia. It is a terminal illness with an average life expectancy of two to ten years, sometimes more. The doctors believe it began two years ago. It makes sense. Everything that had changed in her, it all makes sense to us now. I know now she still loved me the same, but her brain was shrinking, and some of her was fading away.

I took a day off work to try and somehow process this information. I learned all I could about what this meant, tried to find others who went through this, read anything I could find—but the resources are few. I’ve never experienced such fear and sadness before. We have no timeline, no understanding of how fast this disease will progress. Someday she will need constant supervision and care.

I’m writing because I’m at a complete loss over what to do about my wedding. I feel so completely selfish for worrying about my wedding at a time like this. I can’t help it. My first instinct was to move the wedding date so my parents (and my fiancé and I) wouldn’t have to worry about whether or not she would be at my wedding physically or mentally in one year. I reached out to our venue, and they were amazingly understanding and had a spot available three months away. Planning a wedding, that fast seems crazy—but I wanted to do it for my mom and for us.

I thought it would alleviate the worries my parents had that she would not make it to my wedding—it was the first thing she voiced when I got on the phone after hearing her diagnosis from my dad. Unfortunately, by giving them this earlier date three months away, all I did was create new stress and new fears. Was I condemning her fate by not believing she would be okay in a year? I want to believe she will be okay. I won’t regret speeding up my wedding, but I would regret waiting a year and having the worst happen.

So I was planning to wait a month and see how everyone felt with more time to let everything sink in, but my dad mentioned that an out of town wedding would be too difficult on the entire family. Again, I’m being terribly selfish, but the conversation got worse from there.

I know the venue doesn’t make the wedding; it’s the couple and the family. But I had my heart set on sharing my perfect venue in my city with my family and friends, and I can’t find anything in my hometown that even compares to the casual, intimate style. However, I realize how difficult it really would be on my family to attend a wedding in my city now that this is happening. But if we move the wedding north, closer to my family, then my fiancé’s family has to travel instead of mine, and his grandmother might not be able to travel that far.

Additionally, my fiancé and I were originally going to borrow the rest of the money we needed to pay for the wedding from my parents, and then pay them back as fast as we could afterward, but now I feel terrible even asking for it. With the care my mother is going to need, I don’t know if they will be all right financially now. I feel like they will try to pay for it, even if they can’t, which breaks my heart even more.

I just don’t know what to do at this point. I don’t know if I should cancel the wedding, cancel my venue, find a venue in my hometown, get married in three months, wait a year… I am sure the right answer isn’t there, which is why it’s so impossible to find. The uncertainty is what’s eating me up right now. My fiancé is disheartened and doesn’t think we should have a wedding because of the financial strain it will cause on the very beginning of our marriage. I’m just brokenhearted that I’m going to lose my mom and also might not even have a wedding to look back on.

A: Last month’s theme was Growing Up, and I think that one of the hardest things about growing up is switching roles with our parents. Suddenly, we become the caregivers and the worriers, and even though we might’ve anticipated the role reversal, I’m not sure we’re ever ready for it. I’m so sorry that in your case, it’s happened sooner than you expected—and in such a difficult way.

I first want to respond to your concern about being selfish. You are not being selfish. In fact, your focus on figuring out how to have a meaningful wedding in which people important to you can not only attend, but not be inconvenienced, seems pretty unselfish. Also, this is a very important celebration, as well as a very devastating diagnosis to be dealing with. You are therefore absolutely allowed to feel whatever feelings come up, and to use information from your emotions to help you move forward.

You are also doing the right thing learning as much as you can about FTD. Given the uncertainty of how dementia progresses, understanding the certain parts about the diagnosis will ultimately be helpful. Taking a day off from work was definitely a good idea. It’s important to make sure that you’re doing everything you can to take care of yourself, including possibly pursuing your own individual, couples, or family therapy to work through feelings of guilt and grief, which are common, as well as anything else that comes up. Importantly, you’re thinking about how to have a celebration in which your mother can participate as fully as possible.

In order to best answer your question, I contacted a neuropsychology colleague, who referred me to this book. Pick’s disease, or frontotemporal dementia (FTD) is a progressive neurodegenerative disease. FTD is, as you mentioned, fairly rare, relative to Alzheimer’s disease (AD), which is a more commonly known type of dementia, and it starts earlier (around age forty-five to sixty-five). While AD tends to affect the medial temporal lobes of the brain first (they are responsible for forming new memories), FTD more prominently affects, as you also pointed out, the frontal lobes of the brain, and can thus drastically affect personality and behavior. FTD can also cause apathy, disinhibition, socially inappropriate behaviors, a decrease in personal hygiene, and a loss of insight. People with FTD have problems with executive functioning (e.g. planning, judgment, problem solving), and can also have language impairments. Unlike in AD, memory is usually fairly preserved in FTD, although aspects of memory can be affected. Caring for a loved one with FTD can be particularly devastating because of the personality changes associated with the disease.

Unfortunately, because there can be significant individual variability in how FTD progresses, it’s not possible to know exactly how your mother will be doing in a year. FTD tends to advance more quickly than AD. Additionally, because FTD affects social behavior, there is the concern that your mother could act inappropriately at the wedding, which could become stressful and upsetting. So, because it’s important to you to have a wedding in which your mother can participate as fully as possible, your gut feeling to schedule something sooner makes sense. Moving up the date will not “condemn your mother’s fate.” If waiting and having your mother not be able to attend is something that you will deeply regret, then you should consider celebrating earlier.

All of that being said, there are many ways to celebrate a wedding. Working within the parameters of this difficult situation, consider more options between having a wedding and not having a wedding (or, the grey area between the black and white). Would it be possible to have multiple events? Planning a larger-scale wedding in three months could be financially and logistically stressful for anyone. Consider having a smaller ceremony and celebration in the near future that your mom can attend, as well as maybe another event later, possibly larger scale, possibly with a different guest list, which, hopefully, she can also attend—but you’ll know that she was perhaps most present at the original event. Having a larger scale or additional celebration later would also mean that there’d be more time to save money for it. To brainstorm more about creative ways to celebrate your wedding, look through APW’s considerable resources under “How We Did It.”

Last, you and your fiancé are, understandably, feeling pretty overwhelmed and upset. Are there family members or close friends to whom you haven’t spoken who could weigh in on this and make any suggestions? Can people who know your parents help to advise? Even wedding vendors and, as you pointed out, venue staff, can often be very understanding in the face of an unanticipated family crisis. As I often say in this column, you shouldn’t be trying to figure out all of this on your own. And when your parents are sick, your needs, even during a big life event, can get totally lost in the process. Take good care of yourself and your partnership, both before and after the wedding celebration(s). Don’t lose sight of the celebrating, and, importantly, your upcoming marriage. Ask for support from other important relatives and friends when you need it. It’s hard to think about celebrating in ways that are different than what you originally imagined, but there are still ways to celebrate.

More resources: Although these brides’ circumstances weren’t exactly the same as yours, you might reference the coping strategies outlined in APW’s posts on wedding planning with an emotionally absent parent (here or here) or a deceased parent. You can also explore the Association for Frontotemporal Degeneration’s website. They have excellent general information, as well as information on local and telephone support groups, and other resources for caregivers. Additionally, check out the National Institute on Aging’s website.

The information provided in Ask a Psychologist is intended by Dr. Brofman and APW to serve as general advice and guidance for all readers. The advice herein does not constitute a clinical recommendation or relationship, and Dr. Brofman and quoted mental health professionals do not take clinical responsibility for this information. Ask a Psychologist does not take the place of a confidential clinical consultation with a trained mental health professional. 

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