Struggling with profound sense of sadness: How do you cope?

Like you, we started with the MCI diagnosis in 2022 and then the Alzheimer’s was added in 2025 and then Lewy Body was recently added. Yes, it’s heart crushing to think about all that will never be, and you wonder why us Lord…we had so many plans for our retirement years, but eventually you come to the realization of how much your loved one needs you, and as hard as it is, you will put your feelings to the side, and you will become your loved greatest advocate. You will be the one helping him to make his life manageable and bearable. Will it be easy? No, it will not, it will be very hard, but everyday you will learn what works and what doesn’t. I would suggest that you get involved in a good support group, along with Mayo Connect. For several years I kept everything bottled up and inside. I couldn’t talk to anyone about him without crying. I got my husband into a local Respite program in the last year and they have a support group for the caregivers. I found that it helps so much to share with others what you are going through. We learn from each other. There is strength in numbers. Try not to do this all alone.

One day at a time. Ask God for his help. It may not change the path you're going down, but it will help you in knowing you are not alone in dealing with this new journey. Courage to know what to do, clarity to know how and when to do it, and God's light, to shine down on both of you in the midst of uncertainty and chaos. It's how I do it every day, once I learned of my husband's diagnosis, and it's how I'm trying to deal with it all. It's a lot, and it's frightening, but you are not alone. Trust, that you are not alone. There's power in those words that start my day. Best, Karla

Hello, and hugs to you.
It's a struggle indeed, and sadly you may never get 'over the hump', since challenges will continue.
I attended one of the Alzheimers Association's free community mini-conferences. It was amazing, helpful and supportive.
Joining a support group helps, and the Alzheimers Association can help you connect to your closest group. I attend one through our medical group, and one through a research study we're involved with for dementia.
I've found that education and support help a lot. Taking classes (mostly online, since I'm a caregiver too), and reading dementia and caregiver books helps me. I even took a grief class.
Also, I suggest finding local respite care, so your husband has a safe place to hopefully do activities and socialize, and you get a much-needed break.
Think ahead, so if friends or family ask what they can do to help, you're ready.
You've been the one that's been there for all of them, now it's your turn.
Take care. 🌹

@laneywj

Sorry to hear that you and your husband are beginning the journey that's familiar to those of us who post on this forum. Hope you find the posts by @labrown, @kjc48, and @judimahoney helpful.

The article on this link might also be helpful:
https://www.healthline.com/health/alzheimers/alzheimers-caregivers-managing-frustration
It's difficult to maintain our own health as caregivers, and to avoid becoming impatient and/or resentful at times (especially when one is sleep-deprived). Glad to see that you have included self-care in your daily routine. ...and as Karla stated: "One day at a time. Ask God for his help."

All the best,
George's Wife

@georgescraftjr I'm printing off your Healthline post. Thank you for that valuable share. As you know, along with every other caregiver, it's amazing how up and down this is on any given day, but for me, one of the BIGGEST things on that Healthline list, is getting a decent night's sleep. I've also been trying to take more walks through the day, even though shorter ones, but it's helping. It's not coincidental that you would call out our "One day at a time. Ask God for his help" as when I got up this morning that's the first thing I read from an earlier post. Thank you for reminding me that we are not alone. I needed that today.....Best, Karla

I started this topic right after the diagnosis was made. I’m slowly coming to terms with it I think. Currently waiting for the infusion center to get back to us about the Infusions. My husband still does a lot of what he always has done, he’s in the early stage. We have an appointment with the Alzheimer’s society to help manage this journey. The biggest issue at the moment for me is going from 0-60, I want to enjoy the good that we currently have and yet there is a black cloud over me that seeps in and I become sad again. Before when they said his memory issues were due to his previous head injuries I felt like ok, that’s that and yet when he got the actual diagnosis of Alzheimer’s everything changed. I’d appreciate any tips that you’ve done to help with the here and now. I know I need to be aware and be proactive but don’t want to do it at the expense of living today, if that makes sense.

@laneywj -we seem to be on a parallel path, you and I. My husband just had approval to start Lequembi, and once the neurology department gets done negotiating with insurance, we should be ready for him to start infusions also. I have no tips…just trying to adjust my sails on a daily basis, and there are so many wonderfully helpful people here. I don’t comment often, as I feel I have little to share that is helpful, but I am very grateful for you all, and to have found Mayo Clinic Connect.

@laneywj
Hello:
I noticed a free Grief class advertised on Facebook. It was a two part session and really helped me process what is happening (we have what is called ambiguous grief, because our loved ones are still here).
I also made an appointment with a therapist who specializes in working with caregivers. I am waiting a long time for this popular therapist, so hopefully it will help.
Take care. 🌹

The Alzheimers Association has a 24/7 help line and I have found them to be immensely helpful. They can provide resources for just about anything for the caregiver and the patient.... counseling, group support, legal info, etc., etc. 800-272-3900

I've been helped quite a bit and I'm also new to the journey. I recommend calling with any questions you might have. They could not be kinder and more helpful.
Best to all.

@2me check with your neurologist. Ours in south florida has a GUIDE program set of people in his clinic that follow up after the patient has their lequembe infusions. They offer, caregiving resources if you and when you need them, a nurse available in their program if you have questions, etc. I'm not sure your neurologist has that, but check on it. It's helpful just knowing someone is there if you need them. My husband is on lequembe too. His 19th infusion. Best, Karla