How to cope with the grief and loss when you love someone with dementia

Welcome to the place where I share dementia tips, strategies, and information for family members caring for a loved one with any type of dementia (such as Alzheimer's disease, Lewy Body dementia, vascular dementia, frontotemporal dementia, etc.)

In today’s video, I share 3 big takeaways that I took from the book - Loving someone with dementia: How to find hope while coping with stress and grief by Pauline Boss. I hope these 3 things will help you find some peace as you continue to care for your loved one with dementia as they slip further and further into the disease.

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In case you haven’t met me, my name is Natali Edmonds and I am a board certified geropsychologist. That means that I am a clinical psychologist who specializes in working with older adults. One day, while hiking a trail, I came up with the idea for Careblazers and I decided to see if posting videos online could provide help to the many other Careblazers in the world who don’t get to have help come directly to them in their homes. I hope that this work helps you in some way on your caregiving journey.
#careblazer #dementia #dementiacare

[lornaklassen]

It is so true! I was his caregiver for 4 months i could not believe how fast it happened! I was so shocked, there was no one there for me. Everyone was mad at me, i lost him to a wicked disease. We were supposed to retire, travel, just soend all of our time together. I still cannot believe it, i lost the touch, feeling of loved back, the smile, touch, eating together, sleeping together, talking together, hugging, just hsnging out together, working together, i cannot believe it! Mentally, physically for him, WHAT A ##$%$$$ DISEASE! I AM SORRY! I AM NOT ANGRY AT HIM, I STILL LOVE HIM SO MUCH!

[lonniecruse]

I cried while I listened but this video is very helpful. Thank you. I got the book.

[pfinnvid]

Thanks for this video Natali. I have been living with my wife's Younger Onset Alzheimer's for about 10 years. She just turned 61 this week. I retired early last September at the age of 61 when it became impossible to work and take care of my wife with the use of day care for adults. I moved to Canada with my wife since she is a Canadian citizen and I have dual citizenship after living in San Diego for many years. My thinking was that the public option for Long Term Care would be better in Canada. I live a day to day existence...getting through one day at a time. COVID 19 has made everything 10 times more difficult since Social Services generally available are on hold now. I think daily about how my wife is losing bits and pieces of herself. Longer periods of periods of lucidity. We are applying for Long Term Care and I am conflicted. I want the best care for my wife...but also want to have my life back someday. I will take a look at the book you have recommended. Thanks again...

[paulacrowther]

I'm greiving now even though my husband is still alive. He was 55 yrs old when he was diagnosed with ftd and his language skill have gone down hill since. I miss our conversations and the way he used to look at me with real loving eyes. Now I'm just someone who looks after him and cares for him full time. But I do find some positives like he can sing the words to quite a lot of songs and that's where I can only communicate with him .

[margaretno]

Thank you so much. My husband was diagnosed with dementia in 2010 and I made the difficult decision to put him in a care home 2 1/2 years ago. I am learning to accept the ambiguity and the messiness of this disease however I have noticed that my husband also struggles with
those same feelings. He mourns being home, going on road trips, using the computer, being able to drive etc. The unfortunate part of his mourning is his inability to deal with his grief. My validation of his losses eases his grief somewhat however the dementia seems to make his grieving more difficult. I want to thank you for your videos and sharing. I have only learned of you recently however listening to your comments explains so much of my experience to this point in time.

[chantelgray]

This came at the perfect time! I'm actually going through this currently. My grandma has been in the hospital for 5 weeks and we decided when she got worse a few days ago that it was time withdraw treatment and allow her to transition peacefully in the next few days. As her caregiver for the past 5 years, I feel like I've been grieving even before she fell ill last month. Though it will hurt when that time comes, I know that I have done what is best for her and I have grown through the caregiving journey! ❤

[ABoyNamedJoe]

The losses don't only go one way. For my wife, she no longer complains about not driving. Her tantrums when she gets frustrated aren't as loud or as lengthy. She really has difficulty chasing me when she wants to hit me because she thinks I'm hitting her, but in reality she bumped herself on the dresser drawer.

Even these "positive" losses are twinged with sadness however. It is also a reminder that her emotional energy and spark is also fading. Living with dementia is truly a walk with uncertainty.

And thank you Natali for your excellent videos and untiring support to those on the front lines of caregiving for our loved ones with dementia. My the Lord prosper you in all you do.

[karenc.smithfineart]

I really needed to hear this right now. My husband is in moderate stages, still high functioning. I’ve recently been stuck in grief and denial. The thing that I miss the most is meaningful, engaging conversations. He’s only 67, and we’re both retired and spend most our time at home together. It’s just the two of us, we did not have children and are not close with family members. He has not been diagnosed yet, and he is in denial. For me, Feeling scared, sad and lonely at times has been difficult. Thank you for this information and your sincerity, this truly helps. God Bless you 🙏🦋💖

[margaretcross]

I'm really finding your videos helpful. Definitely grieving the loses these days and it helps to affirm that.

[elisabethm]

Thank you so much, we’re in the moderate to sever stages of Lewy Body Dementia. I realized very early that this process was like weaving my garment of widowhood with each passing day, another thread is laid down. Your description of the ambiguity and the gradual grieving is so true. The skills of learning to live in this liminal state of being always in-between is so draining, yet there is a strength I’ve gained from the support of my few true friends. While the grief and mourning is real, we strive to enjoy each moment for whatever wonderful thing is happening - whether it’s his marveling at the beauty of a passing cloud, or laughing at his naughty jokes...I rarely mourn in front of him as he has little expressed insight now as to what’s happening to him. I’m sorry I didn’t see this before, perhaps another group will open up for me...

[donnaallgaier-lamberti]

I relate. For me the main kind of grief has been the loss of our planned retirement activities-TOGETHER. Everything we had worked hard for, sacrificed for and saved and and planned for will not happen. Our plans were not expensive but rather included the physical; bird watching, walking, hiking, spending time with our dog out-of-doors. My 78-year-old husband has so many neurological issues (neuropathy, two hammertoes and Charcot Marie Tooth Disease on top of his cognitive decline and his worsening ADHD that he is barely able to walk unless it is on a paved pathway. All he wants to do now is play on his cell phone or on his laptop. There is no interaction, no friendship, no communication or shared activities and my heart is broken.

[sexyscorpio]

THANK U. DEALING WITH THIS RIGHT NOW. WITH MY 81 YEAR OLD MOTHER❤❤❤❤❤❤❤❤

[EdWilsonPhoto]

When we went through the dying phase with my wife, I was completely stoic. Probably because I'd been watching her disappear for 5 years. About 6 months after the funeral, I was hit by some crushing grief, which I still feel intermittently. I don't understand it, but I'm feeling it now. three years post passing.

[luananoel]

Thank you so much 💓! Your videos are truly a life saver for me. You are a blessing and an inspiration. My husband just found out that his mother has severe dementia and I try to get him to watch your videos but he doesn't want to deal with any of the things that are happening. Do you have a video on dealing with a situation like this? I'm fighting cancer and trying to take care of my 96 year old mother. My half sister has dementia and my stepmother recently died from dementia so I'm kind of overwhelmed by everything. I almost wish I could be one of those people who doesn't care about others...not really but I think about what it would feel like to be that person and I'm glad that I can feel and love others but it's hard. Thank you for being the wonderful person you are.

[clipperbob]

Until I watched this video it didn't occur to me that we have been going though a long process of loss after loss over the past several years. I have been so hyper focused on her care and trying to keep myself afloat with starting a new job that requires a lot of my time and energy that it never occurred to me step back and see just how impactful this disease has been. Everyday is a new battle, cost increase, calls to insurance company, figuring out medications, seeing to it that she has food everyday, hospitals that don't do what they are suppose to do, Memory Care Center that has 2 staff member to take care of 35 people, etc, etc, etc. Today I was told I have 3 days to get her belonging out of her room as she is now in skilled nursing with rehabilitation after a fall. I have yet to even talk with her doctor and they are only focused on flipping the room for more cash. People are so cruel and heartless.

[lauraaday]

I have to thank you so much all your videos have helped me I lost my mom July 14th she was in an assisted living facility and she did not have the virus she was tested however the quarantine and restrictions got to Earth and she just lost it and she start again in dimension and I knew what was happening because I've been around a lot of people with dementia and my mom's 2 sisters and I moved my mom to a board and care home which was really really good they allowed us to visit her on the patio but then she was getting worse and 2 week she went on hospice and she started declining rapidly and she stopped eating and drinking I thank God because yes she had dementir but I did not want to see her get worse with it and I know she's in heaven we then moved her from the board and care home to her sister's house with 24 hour hospice they were so wonderful every one of them my mom lasted 5 days before she passed away she was so happy she got to see like 25 people on the 5th day she was pretty much out of it and she passed away that morning I am so thankful that I was able to be with my mom in her final days and I'm so thankful she didn't have the virus but she died because of it and she had dementia and I'm thankful we didn't have to see her get worse with the dementia My mom was only 78

[davkumi]

I would just add my appreciation to you, Natali, for so freely sharing your understanding and advice. 🙏

[tripdan]

You Have Help Me More Then You Would Every Know, Thank You Very Much.

[terriharrigan]

Wonderful video. So tough dealing with such a tragedy.

[Chahlie]

I am a hired caregiver and just had this conversation with my patient's wife. I personally went through this with a child with an acquired brain injury so I get how friends disappear and the loved one is gone but there is no funeral or grieving. I think my lady is now going to start going out a bit, and the doc has talked to her about meditation, but it's so hard for her, especially when he is so demanding of her. Sometimes for an external caregiver the spouse's care is equally as important as the patient.