Life after dementia: A Caregiver's journey

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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 talk with Lauren Dykovitz on lessons she's learned during an after caring for her mother who passed away with early onset Alzheimers. She shares her mom and dad's hesitation with allowing help in the home, how they overcame those obstacles, and how she has been adjusting to no longer being a caregiver since her mom's passing 1 year ago.
Do you have a dementia caregiving story you'd like to share? Email me at natali@careblazers.com and use subject line: STORY.
Join the 14 day challenge on HOW TO MAKE CAREGIVING 50% EASIER: www.careblazers.com/easier
Download the first chapter of Lauren's book for free at: mailchi.mp/1afb83f4267e/first...
Here's a link to Lauren's full book if you want to check it out: amzn.to/3lCZhV4
Lauren's website: lifeloveandalzheimers.com/
Lauren's FB page: / lifeloveandalzheimers
Lauren's instagram: @lifeloveandalzheimers
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FREE Resource:
📺 Get Access to A FREE Dementia Caregiver Training on How to Care For a Loved One With Dementia- WITHOUT The Overwhelm, Dread, and Confusion: ➡︎ www.dementiacareclass.com/yt
💌 [LET’S CONNECT]
Connect with other Careblazers for information and support inside my Facebook group: / dementiacareblazers
Instagram: / dementia_careblazers
TikTok: / dementia_careblazers
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OTHER VIDEOS MENTIONED IN THIS VIDEO:
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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

Опубликовано:

24 апр 2021

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Комментарии : 62

@MGonzalez-1701 11 месяцев назад

Thanks for sharing your moving story. Both of my parents had dementia. Mom died this past October and Dad followed less than four months later. I lived with them and served as their primary caregiver. I totally understand how one can miss those ordinary moments and what I wouldn't give to have them again. A big challenge for us was explaining to my father time and again that his wife of 57 years had died. I wrote a picture book for him and that helped. At the end of the day I know in my heart that he died because he missed her. I believe that they were reunited - restored to full health and are supporting me as I struggle to move forward. Blessing to you all.

@theresabriant6499 2 года назад

Again these are SO HELPFUL. Mom is probably 1rst, 2nd stage dementia. We have also had family meetings. We did have our meetings in front of Mom. Dad passed 3 1/2 years ago. Moms desire is to stay in their home of 40 years. My brother, aunt, and I are their a week a month then we have a caretaker in the a.m. for breakfast,meds blood pressure & meds & they prep lunch then again for 3 hours at night for dinner to over see nightmeds in between our weeks. She sweetly tried to run the caretakers out but we worked through it. Found Dr. Natalie early on and got into her classes. Think it has been such an easier transition due to her wisdom and walking us through. We've recognized things we'd never have recognized bec of Dr. Natalie's advice and direction.

@johnlovesbaby 3 года назад

We have the same situations .my husband passed away last month..yes I lost my self too. But still I never gave up on my husband...I am a full time carer for 3 years to my husband..but I never regret taking care of him..I miss my husband and still grieving for his lost..thank you for sharing..

@quesnelridge 3 года назад

Lauren, thank you so much for sharing your story. It is 4 weeks now since I placed my husband in a nursing home. I was not prepared for how I would be affected by this change in our circumstances. I have to learn a whole new way of handling my own life as well as supporting him after having been his main caregiver for five years.

@DementiaCareblazers 3 года назад

Hi Marg. Thank you for sharing this with us. Finding your new normal after a change like this can be difficult. I wish you all the best in this new season.

@kathypfeiffer8112 3 года назад

Sometimes I think my dad is experiencing his lifetime all blurred together. He might be telling me a story from 40 years ago and I'm part of the story, but then he'll look at me, trying to make sense of who I am. The other day he said that the story was about...(long pause)..my sister. (I don't have a sister.) But it was like his brain was trying to connect the dots of who this familiar but much older person is (me sitting next to him) and how they can be connected to this younger person, so very vivid, in the story. I like the idea of him being in all of his lifetime (and not pinned down to now), and later being everywhere. Thank you for sharing your story, Lauren.

@OceanBlue27 3 года назад

The timing of this video was perfect for me. My Mother just passed away this week and I am preparing for her funeral. It's been a 15 year journey for me, as her son ,caring for her myself as this disease has progressed until the last month when I engaged hospice because I was no longer unable to provide all her care. The anguish of watching her decline was overwhelming but now I'm faced with this new challenge of being totally lost. My life has revolved around her care and suddenly that's gone. Her 24 hour care was my job and like Lauren said I almost miss it. Something I never imagined. I realize now that I must begin a new journey to find myself again. It's too soon now because the grief is so overwhelming. But this video has provided a glimmer of hope that things will work out. Rediscovering who I am now and not who I was 15 years ago. All points that I had not considered. Thank you......

@hollywalling66 3 года назад

“I’ve lost myself...I don’t know who I am anymore”....this is how I’ve felt in this journey with my MWD.

@lindafrazier8092 Год назад

I appreciate this so much. Caregiver for mom for 8 years who died endstage Alimiemers its been three years and I am still feeling the impact ... honored that i could take the journey with my mom... transition was so hard❤

@ritalavictoire5529 3 года назад

Thank you , I really needed this today . We are Just in the process of having to move my mother who is 77 to a nursing home. She went from driving and having a life from this time last year to all of a sudden needing more permanent care . She begs us that she wants to keep staying home with my brother and his family and is resisting going to a home. It breaks my heart loosing her so fast and the extreme guilt of having to make this difficult decision , and not being able to take care of her as a family .We tried even with some help coming four hours a day but she’s so angry, and fights taking her medicine and is being very difficult to be with. I’m just Learning how to communicate better with her as no one teaches us how to live with a parent with early onset Dementia. Thank you so much for these videos I’m learning so much .

@reuben854 3 года назад

I am so touched by this. I lost my loved one in January. Our grief is so personal and I feel the same as Lauren that my loved one is always with me.

@stellastar63 Год назад

Thank you for this video, I so resonate with it 100%, from agreeing with my siblings to hire live-in carers to assist with mum’s care to ease the burden on me as a primary caregiver, the “misfiring” in hiring carers, to chopping & changing till we’re in a peaceful & calm path. We are still with mum at 91, she has a favorite between the two aides we have for her and she doesn’t remember me, her daughter at times but I am at peace with the illness . True, feels like you have already lost LOs before they’re gone 😢 Looking after LOs with Alzimers/ Dementia is a humongous task! Huge hugs to Lauren & all children taking care of parents ❤ From Zimbabwe 🇿🇼

@brendadimaggio4159 3 года назад

This is so incredibly beautiful. I so needed this so very much TODAY. I am at a huge loss after my husband’s passing from LBD/Parkinson’s Disease. Without him, I just do not know what to do, not caring for him..yes, it is a huge gaping hole that no one else can ever fill.

@DementiaCareblazers 3 года назад

I'm so happy this helped you. Sending you love, Brenda! You will forever be a Careblazer. Thank you for being there for your husband when he needed you most.

@EdWilsonPhoto 2 месяца назад

In my humble experience, there is not much life for a caregiver after your loved one passes. I have one friend who keeps in touch... and my kids..NO ONE else.

@Olamchesed 2 года назад

When my mom was ill, she had caregivers. I helped some, but they did a lot. Me and mom and the caregiver played cards sometimes. I enjoyed being with her. I miss her. Now I take care of dad, but he's difficult.

@rohanawolf2089 3 года назад

This was so personal and real. This really puts the situation into a clear emotional perspective. It hit all the painful spots and then all the growing that is required of your soul in this experience. My family went through this with my father. Now my older sister is beginning to experience dementia. I wish that I had had all this when we were caring for my Dad. Now, I gratefully share this for my sister's care in the future.

@toffeelover2558 3 года назад

Listening to you is very difficult...you went through such heartache...you are lucky enough to have family around, thank goodness. I hope your pain will subside...you are a good daughter. I am 24/7 caregiver for my dear, dear husband. I am alone, am scared. My husbands children live too far away to help or come over...they don’t call.....which adds to my deep heartache......I know what you mean about losing who you are. I used to have a hobby I loved so much, so creative and gave me joy. Now,when I walk in that creative room, I just feel confused, no excitement for a project...I just want to care for my husband....I am afraid to bring a stranger in our home to care for him....his doctor, who I love, but only gave me a list of places...which I am not comfortable with...we retired down here 5 years ago, and don’t have the caring, loving doctors we had, now it feels there is nobody who cares.....my husbands neurologist also told me I have caregiver stress. I just feel overwhelmed and lost. I have lost the few friends as I only want to care for my husband...I don’t enjoy the old way of life....we had a beautiful life together...only I remember....when I show him pictures or discuss something that happened he might remember...we both lost our previous spouses, after they died we were introduced...we have now been married 18 years....my darling also has sundowning as well....I have MS and cancer....not a serious cancer right now...my MS has never progressed beyond remitting during the 20 years I have had it..just a few bothersome symptoms, but I am blessed.....I wish I could wave a wand over my husband so he is not confused, forgetful and in a strange world. I can only try to make him laugh, dance help make coffee.....but the fear is always inside of me.....

@DementiaCareblazers 3 года назад

I am so sorry you are going through this with your husband. It is easy to see how much and well you care for him. I hope you are able to find some support in this process. We have a facebook group for Careblazers to provide support for each other that you may find helpful. facebook.com/groups/dementiacareblazers/ I wish you and your husband the best.

@suemoo22 Год назад

I’m reading your book, Lauren. It’s so well written, I cannot put it down. I felt like I was there with you. You’re a strong, brave woman. Sending hugs and prayers. ❤

@marybrand1977 Год назад

This was so very helpful. Our first caregiver was not successful. I may try again. We begin to grieve and we grieve for what the person is losing too. It is so sad for an empathetic person.

@familynash3579 3 года назад

Your Story is My Story - thank you for sharing! "It allowed me to a daughter again !"

@mimimfp8685 Год назад

What a great interview. Thank you! So many important thoughts were shared, and one of them I feel we need to remember when the time comes to consider outside help, in the home or nursing home, is that we get to be a spouse, a daughter, a sibling again, and share those precious moments while we still can.

@gzrguy 3 года назад

That was beautiful, Lauren. You are such a gift to the Careblazer community. So many hearts will be comforted by the words of wisdom you share from your touching experience caring for your mother and now your father with health issues. Thank you for sharing with us!

@tomgcooktown5019 3 года назад

I appreciate having this video to watch later. It will help, I am sure. But, I just can't right now. I know my wife is dying...But I cannot face it yet. TgT

@charlottehammac1123 3 года назад

9 years on this rollercoaster ride 24/7 somedays laughing and somedays Hell, my mom motherly skills were gone 7 years ago, and that's when the role changed to me being a mom to her, and she calls me mom, yes agree it growing thru and learning experience, I have one night every 2 weeks Friday night 6 pm to 5pm Saturday, no much happens but sleep or arenas getting done, this year I told my family Am taking a week off this year, and I don't want to hear anything about it, told my sister she has to take her for a week, I need time OMG, gotta get out and go fishing or something, but yes I probably will take my moms passing hard, and be very lonely and sad , will miss her big time,

@DementiaCareblazers 3 года назад

Hi Charlotte, I am glad you are working with your family to get the break you need! This is such a difficult journey which makes it even harder to think about the future sometimes. I wish you the best.

@theresabriant6499 2 года назад

Hearing your comments warm my heart. It's been so hard to justify leaving for the 1rst time. My grandkids and Mom & Dad are returning to the u.s. after being abroad for 3 years. It's been So hard to not seeing them but family & caretakers covering. My heart breaks but I know I have to take time for grandkids as well. My heart goes out for a family member doing it all alone

@judymanning2538 3 года назад

Thank you Dr. Edmonds you have a lovely spirit and thank you for having Lauren share her story. Love the grow thru and that our loved ones are free.

@lindagraham8884 3 года назад

Not at that stage yet, but this is very helpful preparation for what I know is coming. I am an only child, I am already feeling orphan, I have two grown children, but I know they not feel what I feel. So this is a helpful video for me for when the time does come to say goodbye. Important to keep the spirit strong.

@lynylcullen8370 3 года назад

The stages can come on fast. I wasn’t prepared for how quickly things can changes. “Keep the spirit strong”.. I like that.

@lynnpatterson5285 3 года назад

I too am an only child and I feel like an orphan because my mom doesn’t even know she has a child. My mom lives with me so I’m with her 24/7 and it’s very hard at times. She is now starting to roam outside side so I am constantly watching for her to go out the door. She will go in the neighbors mailbox and tries to get in their cars, fortunately all the neighbors know her and know she has Alzheimer’s. It’s a full time job for sure, some laugher some tears.

@FLeon-bv1hf 3 года назад

So eloquent on all the complexities of Dementia. I surprisingly agree that the bond is almost stronger when she doesn’t know who you are, or can’t express it, yet the bond of intimacy remains, or adjusts to the new terms. Thanks for that insight. The gap in all our lives when she passes is what I fear most, for myself and especially my sister. Thanks for giving us a resource on this stage, I have not seen this discussed elsewhere.

@hildanewby1616 3 года назад

Lauren thanks so much for opening your heart and allow us to learn about your experiences as a daughter/caregiver. I admire you for being so brave and talk openly about your grief. 💕

@donnapeterson8459 3 года назад

Thank you so much! My husband was diagnosed with both alzheimer's and parkinson's at 62. He is now 68. Our children are all in other states and I have been caring for him alone while still holding down a job. The diseases are progressing and I'm in the process of putting him in memory care. Just like with your in home care, the first place didn't work out even though I loved it. It helps to know there are others going through this too. Thank you!

@ary9663 11 месяцев назад

Hugs and blessings for sharing your story. Look forward to following you and reading your books! I am also on this journey, 10 years and it gets so much harder as the disease progresses.

@lorimattingly785 3 года назад

Thank you Lauren.

@loishudson7422 3 года назад

Wonderful wonderful wonderful. Thank you so very much.

@isabelalder9998 3 года назад

Thank you for so much of your personal family journey w/ this disease. It is truly heartwarming & so beneficial for my current situation w/ caring for my MWD (now 92 yrs. old). I have (in recent months) been worrying about how I will deal w/ the grieving process. Your story truly helps to put things into better perspective & helps me to prepare without so much of all the fear or unknowns. I just hope that I'm able to manage & process all of it as well as you have! Thank you again. Sending you much love & blessings!

@forozghaffar3358 Год назад

It was lovely thanks for sharing but I cried the whole time watching the interview 💕

@blazesgramma 2 месяца назад

Thanks, Lauren. My story is similar. I get it :)

@jankrygier1607 3 года назад

An excellent interview worth spending the hour to watch. Both parts resonated with me, especially the grieving/moving on/finding oneself segment; I am at this point, having lost my mom 14 months ago. I appreciate the honest sharing and insights.

@garyhome7101 3 года назад

So very powerful and informative. Thank you so much for sharing this very personal experience and journey!

@lifewithblindnessandmultip8895 3 года назад

I was raised to believe that my family and friends who pass away are guardian angels to look out for you! I was a child who “did not cope well with death!” I lost a lot of my family to cancer! I was impacted the most by my grand papa’s death! He had congestive heart failure and had two massive heart attacks first one when my mama was about sixteen years old! Then I was nine when sixteen years later I lost my grandpapa to a massive heart attack! His heart exploded! He was also diabetic! My mamas side of our family all of my aunts and grandma had dementia my aunt billy had frontotemperal dementia! My grandmother had dementia as well as her baby sister Betty Ann! Aunt Betty never had children and is in long term care in a special place! I am afraid for my mother and she has it in her family her great grandmother on her mamas side died in her early fifties with early onset dementia! She asks what day is it a lot of the time! I’m blind and with multiple chronic disabling debilitating diseases! I was in a nursing home for two years! I called Medicaid told them of the abuse I suffered and told them I was leaving! I called the social security administration and told them about the same things! I left diversicare of lake highlands on June 12th last year! It is honestly the best thing I ever did! I have been home for almost a year! I lost my daddy to diabetes and congestive heart failure and copd! Ye passed on January 22nd this year!

@DementiaCareblazers 3 года назад

I am so sorry for all you are going through. I hope you have found some support in your journey to care for your self and your loved ones.

@ninabrazil4707 3 года назад

Thx Dr 4 sharing

@joannejanicki9272 3 года назад

This was an amazing interview and story! It helped me so much, especially since we are going on our third caregiver! I placed my mom in and a LF, and knew that it wasn’t a good fit by the third week. We’ve been blessed by being introducedTo another caregiver that we are going to try again and bring mom home.

@sondradickens1770 3 года назад

This video is so helpful thank you so much for this great information. ❤️

@belindasalcido5051 3 года назад

Thank you so much for sharing your journey. I lost my mother April 4, 2021 she too had Parkinson's and dementia. Grieving is intense. I love how you describe your perspective that your mother is now everywhere. It gives me strength in coping with my grief. Thank you.

@sylviebigger4939 3 года назад

Thankyou so.much with the indepth details.on your help. I too have had hard times also.

@1HeathersJourney 3 года назад

Love your view on grief. So true, a grief book I found a lot of comfort in after my Dad dies 4 yeas ago is.. Permission TO mourn by Tom Zuba

@juliekilborn8555 3 года назад

Thank you. So helpful and honest.

@kathyives7551 3 года назад

You are such a sweet person. Thank you for sharing your story. My Mom passed away 2/18/21 and my husband is in the end stages of Multiple System Atrophy. This is such a very difficult to go through. God bless.

@peterk4134 Год назад

Lauren seems the motivated type who would take on the “world”. Did she usurp her Father’s role as husband . It’s not clear if the father was working and could not be by his wife all the time. Lauren is young but the caring role is a first experience. I am old but it’s also my first experience and there have been hit and miss moments caring for my wife. This is the fourth year after my wife had a stroke and her rehabilitation was soon overtaken by Vascular Dementia. The health system has case numbers, not people with health problems. All PT OT Speech Therapy help was withdrawn as there was no more progress. It’s a long period of self reflection and full time caring for a wife of 55 years with a high intellect to one who has no memory. Yes, I am growing through it, still learning about life. The best advice of many is to stay healthy and stoic and keep her dignified and comfortable at home. I will not give her up to any health facility to be just another case number.

@buffyglen 3 года назад

I would like to know what an Alzheimer’s patient thinks inside when he can no longer speak. If he can’t talk with him I don’t know if he can still understand me when I talk to him. Is he still aware even though he can’t talk anymore? My major concern is that I don’t know how he feels inside. Thanks.

@DementiaCareblazers 3 года назад

Elizabeth, this is such a difficult question and difficult thing for a Careblazer to experience. One of the most important things is about how we make our LO's feel. Even if he can't communicate or understand everything, he can understand tone and facial expressions. Even if the words are not completely understood, the meaning can be conveyed.

@1HeathersJourney 3 года назад

@jangiles3009 Год назад

What is the name of Lauren’s book please. Would like to read about her experience .

@theresabriant6499 2 года назад

My Mom's 91

@citysurviver8561 2 года назад

This is soooo hard.

@scottallison4615 10 месяцев назад

I'm caretaking for my mother right now who has vascular dementia and it has been the hardest thing I've ever done. It's been a constant battle with my mom who suffered from crippling anxiety, she's self centered and only cares about her and what's happening to her. Our relation was not the best growing up as she was abusive and the only I could forgive her was to take care of her and I'm not doing the best I can because my patience is paper thin. I constantly feel like I'm failing because I lose my temper with the constant anxiety and OCD but not being able to help organized. She obsesses over her calendar date, names and times throw her in a tail spin. This has been truly a nightmare tbh