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 She became withdrawn and not interested in anything, really; she didn’t want to talk to me on the phone.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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  • GroundControl

    I’m so sorry – I understand the stress you’re going through. My dad was diagnosed with stage IV cancer at the same time as my fiancé (now husband) and I announced our engagement. We had been planning a small, intimate wedding 14 months from then that didn’t require any venue reservations, caterers, florists, etc., so of course I wanted to change the date immediately and get married as soon as possible because his chances of surviving 5 years were around 5-6%. Everyone – my parents and fiancé included – told me I was being negative and should wait and see how his surgeries and chemo went before making any “rash” decisions, so that’s what we did. Our backup plan was to have a legal ceremony with my family and any family members of his that could make it if my dad started deteriorating quickly, but still have the ceremony and reception we’d been planning so we could get photos and celebrate with his family. This appealed to my practical side but I still felt resentful (sometimes just mildly, sometimes insanely so) for the duration of the engagement. My dad ended up going into remission about two months before our wedding so everything worked out in the end, but the emotional toll of waiting just wasn’t worth it for me. I guess my advice would be that there’s no right answer, but you’re in such a unique position that you need to do exactly what’s best for you without worrying about being selfish. I wish you the best with your engagement, your wedding, your mother, and your marriage.

    • Angela Howard

      It may be different with dementia, but my dad recently died of cancer and my family had assumed that we would have notice ahead of time (tumors aren’t responding to chemo, etc.) but he had a rapid decline and died with us having very little realization of what was happening. I wish that we had gone ahead with everything we wanted him to participate in instead of assuming we had time.

  • Bri

    I am very sorry for the struggle you are facing. Alzheimer’s is such a devastating disease. It was very hard for me to distinguish when my family member’s personality changes were from the disease and hard not to take it personally. One suggestion I have us you read the novel Still Alice. It is written from the perspective of an Alzheimer’s patient and really helped me empathisize with the difficulties that the person facing the disease had and made me not take their actions as personally. It’s very scary to literally lose your mind and so it’s normal for them to strike out and have a dramatically different personality, which is terrible because you want to spend time with them and remember them as who they were before the disease.

  • Another Meg

    Big hugs. What you and your family is going through sucks, and I’m sorry you’re all in this situation.

    It will probably take some creativity to find a way to celebrate such a big and joyous step in your life that includes your mom and feels authentic to you. If there’s one thing APW proves, it’s that there are a million ways to have a wedding, and they’re pretty much all awesome. I hope you find yours.

  • SG

    Original Poster. My father was diagnosed with FTD six years ago at ago 60, though he had been experiencing symptoms for about 2 years. He has recently been diagnosed with Alzheimer’s on top of it (they often go together). So I can COMPLETELY understand what you’re going through. I even moved back home 3 years ago to help my mom care for my dad.
    My fiance and I got engaged about 6 months ago and are getting married in 5 months. Although it means that 95% of our guests will have to travel across the US or from overseas (my fiance is British) we decided to have the wedding near my parents since it is so difficult for him to travel. When my mom and I went dress shopping, we had to schedule a caregiver to come watch my dad while we were out. There are other considerations that I have to make about inviting a friend of my dad’s to come to the wedding so he care have someone looking out for him during the wedding and allows my mom to enjoy the day. Some considerations like will he walk me down the aisle or will we dance will have to be made much closer to the day since I don’t know what his condition will be (or if I want him to, since FTD often means that the patient becomes abusive to the caregiver/s). I don’t know how exactly we would be able to get in touch, but if you’d like to contact me privately (I’m sure we can work something through APW) I’d love to talk. FTD can seem really isolating, particularly when your parent is younger than the typical person with dementia. So just know that you’re not alone.

    Specifically to wedding planning, I’ve definitely made accommodations for my father, but (with all respect to the original responder) I would recommend that you NOT completely change your plans. FTD is an unpredictably disease over the 8 years my family has been living with it. It will require you to give up a LOT, and require LOTS of last minute changes on your part. For a long time, I gave up a lot of myself to help my dad, but I’ve realized that’s not always healthy for me and that I need time for myself too. Your wedding might be a bright spot that you and your family might be able to look forward to. I know it has been for my family.

    • RoseTyler

      I highly encourage both SG and the Original Poster to consider the idea here of inviting a friend or other caregiver to look after the individual with FTD at the wedding. My elderly maternal grandmother has Alzheimer’s and this was our plan for my wedding. In our case, my mom’s cousin, (my grandmothers niece) was going to be responsible for caring for grandmother during the wedding. If we didn’t make these plans, my mother would have been essentially unavailable the entire day as her own mom’s demands would have required precedence over being mother-of-the-bride.

      • SG

        Definitely recommend this! I’m glad there’s confirmation that it worked well. As I said above, and I think Chanel said below, this is a key part of my wedding day plan and means that you won’t have to worry about that (as much) on your wedding day.

  • Class of 1980

    Can I just say that this is the Gordian Knot of wedding dilemmas?

    The advice here is spot on, but I’d like to give you a virtual hug too.

  • Chanel

    I am so sorry that your mother has FTD, my father was diagnosed 2 years ago and it has changed my life in a very significant way. I am also planning my wedding and have had to make changes based on his diagnosis. We are actually getting married in Cabo San Lucas and I’ll be having a friend of my father come down to care for him so I can relax a bit (my father is divorced and I don’t have any siblings). But, I chose to still get married in Cabo and do almost everything I would have done had he not been sick. As SG stated, you end up giving up a lot when your parent has FTD. My father is absolutely stoked for this vacation. This disease is hard on him too and the break that the wedding provides gives him something to look forward to.

    Since my father’s diagnosis two years ago we actually ended up having to move him into an assisted living facility because he was single and would not be able to live alone. He has actually improved since his initial diagnosis due to the consistent schedule and high level of care and medication management that he receives at his specialized dementia facility. We did not expect that he would “improve” due to dementia being a disease that is a process of slow decline, but with proper care a person can stabilize a bit and the medication they can take can help stabilize their mood. I mention this because FTD can not be planned for, and so to structure your whole wedding around your mother’s diagnosis may be unnecessary. Two years ago I never would have expected my dad to be doing as well as he is.

    I completely understand the desire to have your mom be in as good a possible place for your wedding. I also understand why at first blush the answer would then seem to be to have the wedding as soon as possible since she will continue to decline as the years go on. The caveat to all of that is the fact that your family has just recently received a huge blow. It does get better… once your whole family has had a chance to process her diagnosis, once your mom is properly medicated to help manage her moods/behavior, once your family has had a chance to make some plans and figure this thing out.

    Best of luck to you and your family, my heart is with you. I’d be happy to talk, please leave me a message here if you would like to talk and I can work with APW to figure it out. Congratulations on your wedding!

    • SG

      Chanel – I’d like to say I’m so glad your dad is doing better in the facility. We tried and it wasn’t a good it for him at this point, just another indication of how varied the disease can be.

      I also think you make a good point about how recent the diagnosis is. Six years ago when we first heard the 2-8 years life expectancy it sent our family completely reeling. There’s definitely a mourning period that comes with the diagnosis before adjusting to the new reality and the new personality that your parent has. That is perhaps the most difficult of all, but as Chanel said, it does get better, even if it still sucks.

      Up for getting in touch if we can work it out through APW.

  • Stephanie B.

    My FiL has dementia that’s slowly getting worse, but at this point it’s still in the early stages. This is hard, and figuring out what seems the best option for your wedding in light of your mother’s diagnosis is even harder. I can’t really offer advice, other than this: there is no perfect solution here, so please cut yourself some slack, and be at peace with whatever you decide. And if you are a hugger, I offer a big internet hug.

  • I am so sorry that the person who wrote this question and those of you in the comments (and others who maybe are just reading along, but are in similar circumstances) are in these difficult situations. I wish you all a lot of support from your community and a sense the right path for you and your family, whatever that is, as you navigate the decisions you are facing.

  • Sparkles

    I don’t know what to say about the dementia aspect of this whole thing, but as someone who planned a really meaningful wedding on a tight budget in 3.5 months, I just want to say that it’s entirely possible. It’s stressful, but entirely possible. So if that’s the direction you decide to go, you will be able to make it work.

    I also have a friend who really wanted her older auntie to be able to attend her wedding without her family feeling like they needed to be completely responsible for her and not being able to attend the ceremony. She hired a young women who she knew with experience working with older adults to keep her company during the ceremony and make sure she was comfortable and knew what was going on.

  • joanna b.n.

    I really hope that the original poster gets to have a wedding with her family present that feels meaningful and a wedding that echoes her hopes for a casual, intimate affair. And those two might happen at different times/places.

    Best of luck with all of the big hard stuff you’re dealing with, which includes trying to kick off your baby family in the midst of major health changes in your family of origin. Both are super important, and this is like the final exam of family-balancing (or Gordian knot, as Classof1980 said). Glad to hear that your fiance is supportive and understanding of the issues, and good for you for thinking through what you want both in terms of contributing to your family and having a meaningful wedding. All the hugs!!

  • Jenny

    I’m so sorry to hear about your mom. For what it’s worth, we have you and your family in your thoughts. *hugs*

  • Abigail Eisley

    Im glad I found this article! I am getting married in 10 days, and a few days ago my mom who has FTD fell and broke her hip, which is basically marking her last decline, and she is on hospice. You cant really time a wedding around an unpredictable illness like FTD. I wish i had waited until after she passes away, but I also have no idea when that will be. So I took a chance, knowing that something may go wrong with her before, during, or right after the wedding. I am so sorry that anyone has to go through this with a parent. Helping to care for her has been the hardest thing Ive ever done, and hopefully will ever do. Its a horrible disease!

  • Victoria

    I just stumbled upon this article because I am in an eerily similar situation; also with a mother with dementia. I think we have decided to do two separate events, just like what was suggested in the original response. I wish I could know what the Original Poster decided to do. Regardless, it’s comforting to know we aren’t the only ones out there with this kind of dilemma.

  • Victoria

    Wow, I really wish I could talk to the original poster about what they ended up doing. I’m in a stunningly similar situation and stumbled across this blog post. I hope they ended up having a meaningful, happy day (or multiple).