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.