Fighting Loneliness When Dementia Steals a Spouse
Illustration by Nancy Carlson
A few weeks ago, I spent my usual Saturday night watching Netflix movies and working on my daily doodle that I post each morning on my website. If I am not babysitting my two young granddaughters, I am usually alone on weekend evenings. I am kind of single, but then not really. My husband, Barry, is slowly dying in a nursing home, being swallowed up by a horrible illness called Frontotemporal Dementia, or FTD.
FTD is a mean form of dementia that affects the frontal lobe of the brain, the part that contains your personality and executive decision-making. It is a hard dementia to catch early and when you finally do, your loved one might be in trouble with the law, have ruined the family finances or lost his/her job. Barry ruined our finances, borrowed money from friends and did not pay our taxes for years. By the time his FTD was diagnosed, we were penniless and I had moved in with my parents while trying to get a divorce. When the doctor finally told me that my husband had FTD, I was happy to know at last that this stranger I was married to actually had a bad illness. It was a relief to let go of all my anger. I could finally stop being mad all the time. I tried to take care of Barry after his diagnosis, but he went downhill quickly and was soon incontinent.
Barry became aggressive and I could not care for him at home. He had gained a lot of weight due to compulsive eating, often associated with FTD. Barry entered an assisted living facility but was soon kicked out for his behavior. He was quickly losing the ability to do anything other than swear and pace the halls for hours and hours. The nurses at the assisted living place wanted me to come and change his diapers. But I was busy trying to get us out of debt. I did not have the time to drive there and change my husband five times a day. Sadly, not many facilities understand FTD.
Soon Barry was sent to an Alzheimer’s unit in a care center. But that didn’t work out either, because it was too crazy and loud, which made Barry’s behavior worse. Then he was sent to the unit with very old people sitting around wondering when they will die. One day they are watching the Ellen show on TV and the next day, just like that, they are zipped into a body bag and hauled out to a funeral home. Barry, 67, is the young one on the floor, but he also waits to die. Now skinny and frail, he is unable to do anything except lie in bed; he can’t talk, feed himself or tell me what he needs. I go to see him each day, and when I leave I feel sad and depressed. I am aware, too, that I am on hold and just waiting to see if I have another chapter left in my life.
So here I was feeling lonely on this Saturday night. A couple of friends have disappeared because a single person does not fit in. Pouring myself a second glass of wine, I thought about two of my single girlfriends from high school who had joined an online dating website. Each of them met nice guys who they are now dating.
I can completely relate to this. My husband also has FTD and lives in memory care. I so miss him even though I visit him twice a week. He lives in his own world now and even though he knows who I am, in a lot of ways he actually doesn’t. He mimicks what I say and I can see he doesn’t really grasp what is going on around him. I so miss having a relationship/companionship with a man. I’ve been with my husband for 40 years and at 63 I’m not ready to give up on my life and relationships with people. But how do people like us meet someone. I just want a male friendship at this point but would love to end up building it into something else in the long run. I went on one of those dating sights and got stuck on the marriage question as well and just shut it down. It would even help just to join a FTD spouse group to hang with people who feel as I do but I can’t find one near me.
I realize this is a site for women so forgive me for chiming in, but when I searched for answers to this problem this was the only site to actually address my question. Many men (like me) are facing the same problem. My wife of 43 years went into memory care in January of 2020 and she no longer knows me or our children. Like so many others I hunger for that person to share my day with, spend time with listening to theirs, and yes even be intimate with. Like your article, I went on a dating site, but never formally joined…after a few days I delete my account and just went back into my shell. A psychologist friend of mine is telling me that I need to reconcile with the fact that my wife is gone (essentially dead) and is not coming back. That is a hard pill to swallow, but makes more sense than all the mixed thoughts in my head. The lesson I’ve learned is; “the better your marriage was the more you’ll miss the company, interaction and intimacy of another person”. I hope there is an answer soon. Perhaps there should be a site where people like us could connect…
I wish there was a site for us too. This in between is so lonely.
My wife has early onset Alzheimer’s and is now in a nursing hone. I am so lonely. Your article resonates completely with me. It is like a bereavement without death.
Wife has dementia, and has had, for several years!
My husband of 51 years has advanced Alzheimer’s and lives at the State Veterans Home. I miss him and truly hate being alone in everything
Man, Nancy Carlson. talk about hitting the nail on the head, I thought I was alone feeling the way I do. you short writing outlines me and my struggles. Thanks for publishing it
Life as we knew it has forever changed. At the age of 51 the love of my life and hero of our children was diagnosed with FTD. He had been gradually changing, I called it checking out for about 3-4 years, then all of a sudden he checked out and wasn’t able to check back in all the way.
Life as we knew it, has forever changed.
Hi my name is June not sure what to say !! My feelings are all over the place to !! Never felt so lonely don’t no what to do been on my own for 4 years but the journey getting to this stage is been a long one !!
I should mention his family including his mother deserted him the minute they new what was wrong with him. So I am alone. No help.
I agree that the lack of emotional feedback is one of the most difficult aspects of being a caregiver. While doing everything for your loved one, mainly thinking for them, and living without being touched unless you touch him, and not being asked about how things affect you or what you think about an issue becomes devastating. The loneliness compounds over time. I am grateful that my husband can still function in a very basic way, but although he tries, our partnership seems a part of life in the past. I believe that you have given lots of thought and consideration to your husband’s health and feelings and that this might free you to find love with another.
My husband was diagnosed with FTDbv in 2013 after all sorts of problems. The police visited 5 times. Now he is easier in that he just sits and sleeps. I wrote a novel, “Beyond the Marraige Vows” (see Amazon), because I wanted to show just how this ghastly disease affects a marriage. I would love to find someone to make me feel good about myelf and I have explored a little, but what have I got to offer? FTD is death sentence for the patient and a life sentance for the carer.
Dear Jill,t
I am certain that the community of women who support, write for, read and comment on posts at this site share my concern for your suffering. We do not have any pat answers for you or easy paths for you to take, however, I hope that you may want to sign up to receive the email for our posts. We are focused on change in all areas that affect women. If there were financially supported groups and more care for spouses of people with FTD, for example, you would not feel so alone. Remember to ask for some regular time for your self from neighbors, friends and family. Take a walk and let the view of something other than a house defined by illness and despair.
Please know that we are thinking of you,
Dr. Pat
Thank you for writing this article. My husband has FTD and is in long term care. He was diagnosed in 2011 and is almost 65. I am 55 and just entered a new relationship with an old friend of both of ours. His wife just died of cancer the spring of this year. This has helped to relieve the stress of looking after my husband and has made me feel like a woman again. We currently are keeping quiet as my 24 year old daughter still lives at home but will have to tell her soon. It is a difficult decision but when we are young we need to also live our lives. I am still there for my husband of 30 years but we have nothing but a short visit which he does not know every couple of weeks. Carrying on through dreaded disease.
Your story sounds exactly like my life
It’s is a awful situation for us that no one can live but very few.
I love what u wrote! I did get a divorce early in the disease but I care for him like I’m married, feel alone like I’m widowed because he is no longer here and energetically feel divorced! I joined a dating service even if it was for evening reading ! I haven’t med anyone I’m interested in as I’m sure my mind is in a different place when we are all free of this disease but I say, you go girl and investigate all the avenues you like and shame on your “friend”for passing judgement. I know someone who checks off separated box😀
My husband has been diagnosed with bvFTD. We are young… he just turned 52. I just turned 49. We have young kids… 13 & 10. At this point, he is living with his mother because of the chaos he & his behaviors cause in our home. I, too, am considering divorce (for many reasons), however, I feel extremely guilty.
Thanks so much for helping me to feel “normal” in such a not normal situation! My hubs was diagnosed with Alzheimer’s 6 years ago at age 46. It is so hard, I feel like a married widow. I said to my mom recently as a joke, “I have a husband, I just need a boyfriend.” But in hindsight that pretty much sums it up how I feel. He is end stage alzheimer’s so i continue to press on and visit him everyday, he is close by. It’s a long journey for sure. Thanks for sharing your heart on the matter!!!!
My husband was diagnosed with FTD a year ago this past September at age 66. However, his family and I had been trying to discover what was wrong since his 65th birthday. Every day I wonder how much longer before I can’t take care of him anymore. The loneliness now is unbearable, and I dread the time when he must enter a home. I used to beat myself up because I always worry about what will happen to me, but have started to realize that he has no worries. So though it is all about him, I still wonder what my life will look like when I am truly alone. I am 14 years younger than him, but struggle to picture a happy life without him. I am never alone, but always lonely.
My husband also is fourteen years older and we are about the same age. I am new to this conversation here but the isolation and misunderstanding is difficult yet I persevere
* meaning Teresa and I are about the same age
Nancy,
My wife was diagnosed with bvFTD last January. I cannot tell you in how many ways I can relate to your words. It is a very different an unusual journey. Yes, I am kind of single too. Thanks for the encouragement. I look forward to reading your new book.
Thank you for sharing you feelings with all of us ! There is a special bonding we all have and it’s sadly FTD . Nobody can understand what we are going through unless your loved one suffers from this disease . Reading everyone’s feelings who is to say having dinner or going to a movie with the opposite sex is wrong it’s just filling a void that we have all lived with for along time every day even before diagnosis.
FTD affects the caregiver as much as the patient , most of the time the patient is unaware that they are sick. We as caregivers need to live our life ( easier said then done) the only way to stay healthy is to care for our loved one yet live our life to its fullest because life is about living and that’s what we must do as caregivers. If we don’t live our life then we are living for FTD ! It has all ready taken over a piece of our life Don’t let it take everything !
FTD is such a horrible disease to fight with. I say fight because my husband of 50 years had the Pick’s disease under the FTD umbrella. He was combative and I had to learn how to dart and weave. There was 6 years he did not even know me as a wife, merely a caregiver. I did not have the means to put him in a nursing home until the last 2 months of his life. I fought this disease with him for 9 years. My husband was diagnosed at 70, however I could remember many years earlier that something just was not right. Luckly for me I handled the finances for us, but as the disease tells us, the mind “falls in love with others, and he did. Divorce, thought about it. I am glad now I did not. No one would have gone through this journey but me. I could finish his sentences when he could not. The caregiver needs to talk to others and not be isolated. If this means opposite sexes, then do it. Find some way to relieve your stress, or the stress will harm your body and mind. If others really care for you, they will understand, if they do not then you must do what is best for you. At 70 now, another relationship is not what I desire. My saving grace is my church. Remember your spouse is dead in a manner of speaking, he/she body is just waiting to return to out maker. Is. My husband went to his eternal home June, 2016.
Ftd almost-but-not-quite widow myself. It is indeed very lonely, and I have joked with my family that I need a gay boyfriend because I want someone to talk with and do fun and interesting things with. Look, I know every situation is different, but my husband is absolutely incapable of being a husband any more. Life is large. There is a lot to do and a lot of ways to be and a lot of people to give your love to. Sign up already. No regrets. No one who has not ealkef tjis path gets to judge. Those of us who have are 100% behind you.
This is such a weird situation all around. My situation is weird too. Hubby diagnosed with FTD at 43, retired, very sick, then a year later the doctor took back diagnosis, said he just has “post TBI, 30 years later”. I had emotionally accepted FTD, my situation, the prognosis, and in my brain, started acting like I was single. I fully expected him to be in a nursing home at this point. Surprise!
Now he is doing great, this week at least, and seems like he could go another 30 years or more?? How do you wrap your brain around that after being told someone is terminal?
I fully thought it through what it would be like to be in your exact situation! Dating sites don’t cover “terminal illness”. The only other option is those cheating sites, and God knows we aren’t exactly in the same mindset as those people?
I am honestly more confused than I would be had he moved forward in his illness, even if that sounds terrible. We just sit in some weird limbo world where he is too sick to work, but not sick enough for anyone to believe he is really sick.
So my solution is to work in a more male dominated field. At least I can be around men again without cheating. There is an obvious hole in my life. So many grey areas here…and I have no solutions either.
Thank you so much for writing this article (I found it on the AFTD Facebook page) as this is the first time I have found someone who can understand what I’m going through. I’m 41 and I’m in the same situation – my wife was diagnosed with FTD 4 years ago (after a year from Hell just trying to get a diagnosis – this will be her fifth Christmas in a care home) and I am fed up with being alone. I’m still young and have now reached the stage in my wife’s illness that I want to think about dating again despite being similarly torn at the idea. I visit my wife when I can but every visit is now so painful to me. One of the biggest things holding me back has been our two children (11 and 15 yes old) both in terms of the effect on them (they are having counselling) and with the sheer practicality of going out for a date. I agree that defining yourself as “widowed” seems cheating but dating websites don’t give us much choice (some of them won’t even allow “married” people on their sites). I haven’t yet signed up for online dating but I get very close every weekend late at night when it is just me and the dog. I feel guilty but I know deep down that my wife could die tomorrow or she could hang on for many more years, and she would want me to be happy. You are right to want to get release, move on and love/be loved again. I have been very lucky with support from my friends on this recent decision. If there is one thing this awful illness has taught me it is that life is too short to feel guilty in this situation.
My husband has FTD. Thank you for sharing your thoughts. I was just saying this morning as I face another long weekend of being married alone how lonely I am. My husband is still at home but we co-exist more than anything. FTD is a terrible disease! I pray things end quickly for you. Blessings!
What if it were in reverse and Barry were the healthy one and you were the sick one. What would you wish for Barry if he were in your place? Trust the love and friendship you had before FTD to guide you now. And trust your own instincts. It’s possible that Barry is waiting to know that you will be okay so he can move on.
Dear Nancy,
I strongly urge you to move forward! My husband is also in a memory care facility with dementia. I see him almost every day, make sure he is cared for and is as happy as he can be. Some days he knows me and some days not. He walks, but is now eating with his fingers, has lost his speech and is completely incontinent. He’s been there for five years, and he was sick at home for seven years before the facility. I, too, thought my life was over and that I would spend the rest of my days as a “grass widow.” Two years ago, when I was 65, I met a wonderful man who understands my circumstance but did not let that stand in his way of “us” happening. We’re a couple now, traveling together for long weekends, combining families and celebrating milestones. How blessed I am to have another chapter in my life! Your children and family will get used to your decisions, because they love you and want you to be happy. My husband is on his own journey, and now, I’m on mine. I’ll be there for him until he dies, and our family knows this. Meanwhile, there’s a lot of living left in this old girl! Trust me. Twenty years from now you’ll be glad you had to courage to cross the threshold into another chapter of your life. All my best wishes.
You definitely deserve to find happiness. Don’t feel guilty. I’m sure your husband would want you to move on. I know I would want my husband to move on if I was in that situation.
Thanks for writing this piece Nancy. I think it is a conversation that needs to happen more often. I was like your friend once. My husband is still at home and I go to three different FTD support groups. My journey is now in year 6. I have a friend that started this conversation with me like you did with your friend. My reaction was…. that’s cheating and what about til death do we part. The difference in our conversation is that it continued for quite a while and after about 30 minutes I had changed my whole perspective on this subject. For me, the initial conversation was a shock for me. I had never given it any thought. For me and my situation my husband was still considered high functioning. After further respectful & loving discussion on this topic I had a better understanding of how another’s FTD situation/spousal relationship was totally different from mine. And while I cannot at this moment see me having a relationship ( any relationship) with another man…. I support my friends that choose to. I think it is a very necessary survival for some. And I think no one should judge someone else’s choices in this FTD journey. All the journeys are unique to each couple, with small similarities here and there, but all the journeys include a ton of pain. I think her reaction is normal. You have been on this journey and wondering about your future for many years now. Your friend only gets snippets of your life not moment by moment up dates. If she’s a good friend keep talking. Bring her into your world even more than you have. Then give her time to comprehend what your reality is. It only took me 30 minutes to change my opinion of this type of situation… and I never change my mind easily. LOL
No matter what happens with this particular friend, please know you do have those of us that support the choices you make!
Hugs, Nancy!!
Dear Nancy,
Heart wrenching! I encourage you to proceed down the path of having a male friend. With your honesty and compassion, I am sure you will meet someone who is understanding and empathetic and fun. Best of luck.
My sister was widowed at 61 and at age 76 found an “old man friend, age” whose wife was (still is) in the dwindling state of Alzheimer’s in a facility several hundred yards from the independent living place all three of them lived in.
He visits his wife several times a day, my sister’s first question when they have dinner together is how his wife is doing. I can’t say there haven’t been a lot of confused emotions, especially for him, but isn’t life like that? He found it hard to tell his children, but over time they all came to know and support the relationship. They are still going strong 2 years later and planning a life together.