Caring for a spouse with dementia is an emotionally and physically exhausting journey. Men especially often find themselves unprepared for the role of a caregiver. Many of them, particularly from older generations, may not have traditionally taken on a caregiving role in their marriage, making the transition even more overwhelming.
The shift from being a husband to becoming a caregiver can feel like a profound loss – of partnership, intimacy, and shared history. Watching a beloved partner slowly lose her memory, personality, and independence is heartbreaking, leading to feelings of helplessness, grief, and isolation. Unlike caring for a parent, which is an expected part of life, losing a spouse to dementia is a slow, ambiguous loss that leaves the husband physically present in the marriage but emotionally bereft.
The practical demands of caregiving can also be daunting. The unaffected spouse can find themselves responsible for household tasks, intimate personal care, and medical decision-making, roles they may not have previously handled. The stress of managing daily care while navigating the unpredictability of dementia – mood swings, confusion, wandering, incontinence – can be exhausting and lead to burnout.
Social isolation is another significant challenge; friendships and support networks may fade as caregiving responsibilities increase, and men may struggle to reach out for emotional support. Furthermore, there is often an unspoken expectation that men should be strong and stoic, making it difficult for them to express the loneliness and sorrow they feel. Without adequate support, spousal caregivers are at high risk for depression, exhaustion, and declining health themselves, making it critical for them to seek help and respite care whenever possible.
My daughter made me aware of your you tubes just a week ago- she said they sounded just like my situation. I know you have thousands of followers and probably will never see this but after reading many of your posts and seeing your videos I feel I have finally found a brother in arms who understands what i am going through. Peg, my wife, was diagnosed in Jan. 2019 with frontal temporal dementia. She is very similar to your wife now. Most of my life I was a teacher, but was an RN for a while so I had some care giving background, but I was not prepared for the amount or intensity of the care that I would need to give. I live in Winona,Mn. ( a river town), not too big and not much help available, but a lady visits 2 hrs a week and I can get out then. My friends are very supportive but don’t want to overtax them. I want to care for Peg till the end but I am realizing that may be unrealistic. I hope to share some of your insights and observations with family and friends to help them better understand what is going on, you say it more elequently than I ever could. Thank you for your sharing. Frank Smith
Hi Frank! So glad you reached out, and yes ‘brothers in arms’ is an apt description, and I would say arms as in hugs of caring and understanding. It’s a rough trip, no doubt about it. I hope may videos help you find another way to convey your situation to your friends and loved ones. It’s so gratifying when I’m able to connect with someone like this. Please stay in touch… feel free to email too jvangurp@gmail.com
Very best wishes,
John
Hello John, I like you am devastated with having a spouse with dementia. My husband has lost both short and long term memory. He has fallen many times so uses a walker. Unlike Heather he miraculously still has not lost any vocabulary. I am struggling with being in charge of everything. I cry watching most of your videos knowing that I will be placing Jim in memory care in the future. I would like to order a a tote bag but did not see it in the store. Please advise me as to how I can order one.
Stay strong! Jean
308 SW 41st Terrace, Cape Coral. FL. 33914
Hi Jean! I’m so sorry you’re also struggling as a spousal dementia Caregiver… I truly understand what you’re going through. It is such a difficult challenge. Placing your spouse in a care home is truly one of the hardest things you can ever do in your marriage, but it will be better for you, and it will be able to be better for him, guaranteed. You will get through it and you will feel better, and he will probably do better as well. It’s safety at this point, from the sounds of it. Please don’t beat yourself up about it and you should think about joining some kind of a local support group. It really helps. Here is the web store with the various products I’m offering for sale. Note that all of the profits go to Heather’s care home. https://yana-20.creator-spring.com
Our stories are very similar. We retired to Florida in 2017 and Lorraine was officially diagnosed in 2019. Today she is nearly 100% dependent on my care. My life has become very isolated. Our children live all over the country and we haven’t been able to travel for ivermectin 2 years. I applaud your openness about the challenges we share. It does help to see that I’m not the only man that gets teared up. I hate being alone but will have to adjust to the new normal. Lorraine will go to memory care on May 22nd. I am dreading this day and feel I am misleading her. Dr advised not to tell her. Furthermore I’m told not to visit for at least 7 days. I’m planning to travel north to visit kids/grandkids. God bless you both while navigating this challenge.
Hey Richard! I hear you. I can only imagine, but I can also relate to, how you’re feeling after these years of spousal caregiving. It really is a unique challenge. I’m so glad that my openness may have helped you a little bit. None of it felt natural to me when all of this started… I was never open with my emotions in this way, but I recognized early on that it was going to be critical to getting through it intact. I’m so sorry you’re facing this dreaded day. It’s so hard. I think it was the hardest thing I’ve ever done in my life and here six weeks later I still beat myself up over it once in a while, even though I recognize it 100% had to happen and it’s the very best place for her, and I came out of it as a survivor rather than a victim.
I hear other people talk about that kind of advice: to not tell your loved one that they are going to a home, and to not visit for a week, and while I have no real expertise in the matter I absolutely would not have gone along with that in our case. I talked to Heather about this in the weeks beforehand. I said you know you have to go live somewhere else because I can’t continue to take care of you at home, and I’m going to get you in a spot where they are kind and can keep you safe and clean and give you good food, etc. Whether or not she understood me is a mystery, but I definitely told her this. I’m pretty sure she had a sense earlier on that this was going to happen. I also spent the first day with her right until she was tucked into bed, and I was there first thing in the morning again. There’s just nothing that could have stopped me from being there.
I feel like dropping someone off with no lead up discussion and not spending time with them for the first few days is just cruel. Maybe I don’t understand it, or maybe it’s different for each person dealing with dementia, I really don’t know. In our case, however, there was no downside to visiting that I could tell. Also, nobody ever told me not to visit (not that I would’ve followed that recommendation anyway). Richard, I think you should follow your heart and do what feels right to you.
Very best to you and I hope things go smoothly.
John
John, I read your story today in the chronicle herald. Your journey is extremely similar to mine. Met in HS, together for 52 years. My wife was diagnosed with pca and ppa at 56. Long term care at 63 (at Northwood) and passed in Dec 2024 age 69. I am sure that your documented journey and advice will help others cope with the challenges. I commend you for this and wish you the best for the future.
Thank you David – I have a feeling I heard about you and your late wife recently. I’m not sure where that would’ve been… We are walking the same journey so you totally get it. Thank you so much for your comments and very best wishes to you as well.
John – I’ve been following your YouTube stories about Heather. I am a sobbing mess most of the time. You are such an inspiration as to what a perfect spouse should be. Truly a gift to our world and especially to gorgeous Heather.
My husband was diagnosed with FTD/PPA in July 2021. We live in PA and have been married 48 years. He is 76 and I’m 71 now. It’s been a nightmare for me – I’ve had to sell our business in 2019 as he was clueless what he was doing, run our huge home, take care of all his needs all the while wondering what is wrong with him? One day he looked at me and asked if there’s a way to get into a neurologist as he felt “off”. I thought it was just getting older, Covid had just hit, etc. As time went on, I knew he must see a specialist. Fast forward – 4 months later his brain scan and other grueling tests pointed to FTD with PPA. Our world was over as we saw it. I don’t remember how I drove home. Thank God we live in near Philadelphia and have access to the best. They gave me tons of information, support groups, etc. but that paled in comparison to how I wanted so badly to talk to him about everything I ever wanted to ask him or discuss with him. It was over, John. The long goodbye. The apathy setting in, he was getting lost in our house, had no more independence or life anymore.
After trying my best to keep the house going (now I have to pay for everything whereas before he fixed everything) and keep his morale up, fed good meals, etc. I was burning out. I reached out to my Palliative Care team and they came over – 2 RN’s and 2 social workers. They agreed that I am waiting too long (everyone does, they said) and he MUST get into Skilled Nursing ASAP! It was a relief, yet heartbreaking. So, that was in January 2024. By April 1st he was accepted into a wonderful place 5 minutes by car from my house!
Moving day was THE worst day of my life and that says something when I lost a stillborn 46 years ago. I felt so guilty I was hoping I’d have a heart attack. He was non-verbal and had no clue what was going on even though we discussed it. It was as if I never told him. They had a team of amazing people settling him in and after lunch they suggested I leave. I did and he had tears streaming down his face. I told him I’d see him tomorrow- I still go every single day and he needs to be fed now so I do that. If I miss a lunch it’s because I have a doctor’s appointment. I feed him ever single day. He opens his mouth like a little bird, but, there’s no recognition of me anymore since last October. Our sons live in California and try to visit when they can, but, they must work and the cost of flying to Pennsylvania isn’t cheap.
My husband’s mother is still living at 101 and in excellent health. I have her stuff to take care of, too. I’m POA, everything! Ugh! Her other son died of the flu in 2018. I have hardly any family left and not much of a support system. Lots of friends who mean well, but, they can’t really do much except go out for dinner, etc. We are ALL getting older and have health problems so it’s not easy to call your good friend when she was just diagnosed with Parkinson’s! I’ve lost 3 bff’s to cancer before they were 70! I have a very dear friend of 45 years and I suspect she’s getting dementia now!
My doctor wants me on anti depressants, but, I told him no because I don’t necessarily feel depressed. I feel SAD. That’s the word. I’m so sad. I want to come into the house and tell Jeff I heard something he’s got to hear and he’s gone. Or, I need to call a handyman and who should I call? This is sooooo devastating. This Dr. Bruce Miller at UCSF said on 60 Minutes that FTD is the most devastating disease that could happen to a person. When I see your Heather, at least she laughs and that makes me smile. My Jeff can’t utter a sound. We are always trying to make sure he has no pain because how would we know? Hospice isn’t ready for him yet because he is eating well and not deteriorating physically nor in pain. Mentally, he’s gone.
I hope we can keep in contact and maybe others here, too. Did Heather get diagnosed with FTD? They say it hits you when you’re young.
Sorry to go on and on, but, I wanted to give you my background and tell you how much your videos have helped! Heather was an amazing lady back in the day, eh? She is a gorgeous woman and you can see how the dementia has taken its toll. Jeff has “that look” on his face – more so than Heather. She still appears more lively and laughs. My husband is frozen in time. My sons are devastated and he hasn’t recognized them in a year. So sad……….
Bruce Willis’ wife, Emma, has a book being released in September for caregivers of dementia ridden spouses. It’s called The Unexpected Journey. I can’t wait to get it!