Bad dementia advice: Standing up for your loved one
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- Опубліковано 4 жов 2021
- 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.) Every Sunday, I share a video to help you in your dementia caregiving journey.
In today’s video I chat with an amazing Careblazer and Care Course member. Micky talks about how when her husband was first diagnosed with dementia and she asked the PCP for what she should do, she was told to "get a divorce" and go live her life. Listen to her story of love, determination, and commitment as she cares for her husband with dementia.
Book Micky mentions:
Healing After Loss Daily Meditations: amzn.to/3izcuh5
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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. In my job, I help people with dementia, and their caregivers, by visiting them in their own homes and helping them cope through the many struggles of caring for someone with dementia. I have always wanted to help more people than is possible for me in a work day. 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 do this in my spare time. I hope that this work helps you in some way on your caregiving journey.
#careblazer #dementia #dementiacaregiver
![[Ep: 5] Caring for a husband with dementia that doesn't recognize you](http://i.ytimg.com/vi/Ze14jt-lbgQ/mqdefault.jpg)
My husband was diagnosed with alzheimers, following a PET scan. The psychiatrist who gave us the results literally said "Sorry, it's alzheimers, here's a prescription, I don't need to see you again". His 'nurse' gave us leaflets for the alzheimers society who only provide leaflets & their website points you to other websites who, in turn, point you to other websites. I needed someone to actually talk to & I'm so glad a friend recommended your UA-cam videos.
I feel the same way as my mother is still in the hospital after one day 2 weeks ago my 86 yr old mom went from one day still waitressing part time, paying her bills, and living much younger than her age to waking up to her paranoid, confused and delusional! I assumed it was a stroke so I took her to the hospital where at this time she is still as they ruled out UTI, stroke, and say she’s in later stage dementia! I saw her seeming to slow down a bit during the COVID lockdowns and assumed the lack of her working and socializing was beginning to make her feel her age or possibly her copd was taking away some of her very energetic past self. Because of her delusions and these new recent unsafe behaviors make her tiny apt a very dangerous I can’t bring her back to the small apartment we had been sharing at this time! That and the fact im also caring for a son with serious Chrohns disease at this time! Of course the hospital wants her out last week yet I can’t find one place I find acceptable to take her because of her delusional behaviors in the hospital report! This seems crazy to me! Isn’t delusional behavior all part of this disease! Because of how sudden this came on I realize this could be vascular dementia ( from my own research on here) but I also still wonder if this could be a reaction to a medication or possibly a breakdown as it happened when her grandson was in the hospital, or something else mentioned in others of these videos. Gosh! I just need her in a good place that I can feel is giving her a fair shot and today I will continue my journey finding respite care at a facility that will accept her and work with her! If anyone has any suggestions or thoughts from possibly a similar situation- I’d greatly appreciate it !
@@laneybop1728 good luck with your search.
@@chrystalfrost1775 thank you!
@@laneybop1728 You could try telling the hospital that you don't have anywhere to put her and that you are not able to safely care for her and you will not accept a transfer back to your home. You will find that if a family member is there to take care of your mom aka you, they will not be motivated to place her.
@@chrystalfrost1775 u want I will dress fast
Thank you so much, Micky and Dr Natali! Micki’s story is a perfect example of how the US medical system fails all of us. Micky is well-spoken, well-connected, educated, “para-medically” experienced and financially able and still this was the way she was gas lit, second guessed, and dismissed.
I am so glad Micky was open about her experience.
Dr Natali, I commend you for your interviewing style. You are listening and absorbing, not interrupting at every opportunity like so many others.
Adrift? Oh yeah.
Mom is 95, has dementia, fell 2 weeks ago and broke her hip.
I was asked to make life changing decisions on the fly. With no experience or ideas about what to do.
It is utterly overwhelming.
Mom doesn't have Lewey Body dementia, but needs help with almost everything.
It feels like we have entered into a tunnel with no apparent exit.
No guide books, no help.
Boy do I understand.
Yes, this site is immensely helpful!
Why oh why would you wait til age 95 to not have some sort of plan about what to do in case of emergency.
@@JennyBaty1same thoughts here, this seems very odd!
My friend's husband had dementia. She finally had to put him in a nursing home. It was very sad but she would get bruises from him and he was too strong for her to handle.
My mom stop walking for a week then walk then stop walking again then would walk . She was diagnosed with Alzheimer’s. She wondered , she at times couldn’t sit up . The week by week of changes was mind-boggling. We couldn’t touch her sometimes.
Oh Mickey, you were such a wonderful wife and lover to Don. Thank you for sharing your journey and how you stood up for him. I feel we’ve walked the same path. Jersey girls rule. May you have peace and wonderful memories ❤❤❤
I appreciate these real stories....like therapy for we Caregivers. My husband has VasDem diagnosed 13 months ago, I knew something was very wrong back in 2014.
I am a retired nurse I worked in a locked dementia unit 12 years and it was heartbreaking to see what the families went through. Your love for your husband is heart touching ❤
We had such a horrible experience I literally fired our “memory” doctor. Thank goodness I had done a lot of research and knew when we were being dismissed and I was being accused of “over reacting”
I am shocked by the beginning diagnostic journey with the doctors!!! Bless you!!! Your remaining talk...beautiful!!!
All too common and inhuman. I know a doctor who gave up doctoring because she couldn't stand to treat real live people like things.
I totally understand about going off and doing something for yourself.
Where are you going to go!? I went to a wedding of a friend. Sorrounded by friends. But because my bride wasn't with me. And I was at a wedding ALONE for the first time in over 30 years. I was just miserable. And I felt so alone. Even with many friends around me. And I just made an early exit so I could get back home to the woman who doesn't know who I am anymore.
Bless you. Go to the ocean. Go to wide open spaces. Go to the mountains. Go for a long walk. Go for a drive. Go touch a tree. Go find something new that you can say "look at that, that is something new." The goal is to get yourself exteriorized periodically from a limited area of focus.
P
@@kathym6603 trust in Jesus stop trusting in men...men need to look to God not always be codependent to a bride.. take care
She is still in there somewhere.
When you separate from her try to convince yourself that ‘she’s just home waiting for you to return’.
I can see from your writings that you adore this woman and God bless you for that love.
Be patient with yourself. You’re doing the best you know how.
@@charlotteknox8100 thank you very much. She went home to be with the Lord a year and a half ago. Still picking up the pieces and trying to move forward
Thank you for giving the guests a chance to share their story uninterrupted
Thank you…your story is both inspiring and comforting. Your advice is top notch and while my husband with LBD is now in the late stages(when yes, it’s very difficult) your experience encourages and strengthens me. ❤️👍🏽
This is such a beautiful story to share with those who our wading in a sea of the unknown as they try to sail thru an take care of a loved one with dementia. I refuse to stop fighting for my mom, the neurologist said that he couldn’t do anymore for her. My family refuses to give up on her, Where do you go to pick up more help for your loved one and family. My father refuses to give up on the love of his life, and my heart is so full of love for him. Your videos have been implemental in making me realize that I am not alone in this.
Thank you Mickey, for sharing Don’s story of Levy Body dementia your journey together. I think it is sad when Dr’s can’t be more truthful, or helpful to their patient and the family.
Even though I worked in healthcare for over 20 years, it is different and difficult when it is your own hubby or wife. I am learning to walk that walk with my husband, who has “ mild dementia per the Dr. The Dr’s don’t see him often and frankly I think he is further along.
The 2nd neurologist doesn’t think it’s Parkinson’s, yet he has many symptoms of this. I am often told he would better in a nursing home. No thanks,! Yes they just push the medication, see you in six months. It was extra for you dealing with Co-vid. I am trying my best to keep my husband h9me, yes the incontinence is hard. One day at time. Thank you for all your good suggestions and sharing your story. Bless you.
God bless you for sharing your story.
My neurologist is wonderful. I just couldn’t make it without her. My husband has Parkinson’s with the dementia that sometimes happens. I hope everyone can find professionals who give compassionate and attentive care.
So grateful you shared your story with us. I will be thinking about your experiences as I navigate this difficult time. Hope I can be as strong.
Trust yourself! I needed to hear that! I tend to always be second-guessing decisions. Thank you for sharing your story so that what you learned can benefit others. I want to believe that I’m doing the best I can.
Micky, your powerful.
Extremely helpful here for all who listen tp you. These situations you have been through, and are explaining here, are excellent guidance for us all.
I hear you, and thank you. Going through this myself now.
Your descriptions of what went on, with doctors etc, are outstanding guidance.
Timeline of when things happen, spot on. Most part, no one really knows when or what exactly will happen to your loved one.
Your point...take care of them yourself as best as possible.
HELICOPTER WIFE...HELICOPTER HUSBAND!! That is the best!!!
Your the best Micky!
Kudos to this woman for her perseverance and keeping her DNR orders from her husband! We can learn a lot from her and all the other "helicopter" wives and husbands out there.
I feel your pain Mickey....my moms doctor here in CT has been crap to deal with. They refuse to diagnose and even give referals to nuerology testing. My aunt and I have been scrambling to try and keep her safe. It sucks. My moms memory is gone and she fights us on everything.
But here in Indiana, my mother fell, sustained a concussion, the doctor diagnosed her with Alzheimer's (which she does NOT have), facilitated putting her into Assisted Living (whereas she has ALWAYS said she never wanted to be put in a nursing home, and she moved from her dream home to a one story home just so she could live out her life at home), and refuses to admit his error and let her go home with his blessing, so she is stuck in a facility where she still does everything for herself except meals and medicines are brought to her in her room. She cries day and night since she has been there (going on 4 months now) because she just wants to go home. My siblings have taken over her property, her vehicle (which, just months prior to putting her in the Assisted Living, one of my siblings found online for sale, flew her in my siblings private plane to see, and convinced her to buy), bank account, and refuse to bring her her mail, ... or even a phone book. My Mom does NOT have Alzheimer's (and as a medical professional whose dad had Alzheimer's, I know very well what it 'looks like') and does NOT need medical attention for Alzheimer's; yet yours apparently does have it, and cannot seem to get the help needed. Our medical system is failing.
I LOVE YOU PEOPLE THAT ARE INFORMING THE WORLD ABOUT THIS HORRIBLE THING. 🙏
You had an uninformed doctor. The divorce does not mean break up or leaving him. It is more about protecting assets and being able to qualify for certain programs. There is a 5 year requirement that you must meet so the financial breakup early is a thing. Seeing estate planner early is important.
Ty for the recount. Very strong woman, perserverence .
What a fantastic video that’s very helpful, everyone’s situation is different,but there are things that apply to everyone thanks for caring and you are such a blessing for caregivers!
Mickey, I admire your strength and presence of mind.
Bless you Mickey! I hope I have your strength when the time comes.
Thank you for sharing this journey. 💜
KUDOS to BOTH of your interviewee and you as well, Dr, Natali. KEEP ON!
Thank you so much for sharing. And great interview! Without interruption of ANY sound, only nodding. Great job! Thank You! 🙏 👍👏👏
Thank you for your channel! I'm so glad to have found you. May God bless you for your great work! We need more loving people like you in the world.
THANK YOU MICKEY FOR YOUR COURAGE TO SHARE SUCH A DIFFICULT CIRCUMSTANCE. I'M SO SORRY THAT YOU NEEDED TO GO THROUGH EVERYTHING YOU DID. HE IS OBVIOUS THAT BOYH OG YOU HAVE BEEN VERY INTELLIGENT. TO WATCH THE DETERIORATION IS HARDER THAT ANYBODY CAN REALIZE. AND NOBODY SHOULD EVER SAY "I KNOW WHAT YOU MEAN AND FEEL". THE REASON IS I HAVE FOUND THAT "EVERYONE HAS TO WALKIN ANOTHER'S SHOES". THE CAN RELATE IF THEY HAVE GONE THROUGH ANYTHING SIMILAR. AFTER 30 YEARS TOGETHER. MY
SITUATION WAS TO WATCH MY BEAUTIFUL MOTHER AND MY WONDERFUL FATHER. SHE COULDN'T TALK OR MOVE IN BED WHERE SHE ENDED UP - IN BED. I SOBBED EVERY TIME WE WENT
TO SEE HER WHICH WAS EVER DAY. AND THEN EVENTUALLY HAD TO ALSO GO THROUGH THE SAD'
LOSS OF MY FATHER. I LOVED THEM BOTH AND MISS THEM SO MUCH....AND YOUR LOVE IS VERY
APPARENT YOU DEEPLY LOVED YOUR HUSBAND. BEST WISHES
Thank you, Mickie! I feel like I just met a kindred spirit.
Valuable advice. Thank you for sharing Micky. This is an incredible channel.
Thank you so much for this video! I appreciate your willingness to share your experience! Very helpful for people in the same situation.
Unless these people walk in the shoes of a caregiver , they should politely back off. I deal with my daughter who was diagnosed a year ago with advanced FTD. It's no easy journey for either of us...G B
Going along with the story never worked in my situation. Since a lot of my wife's delusions was I had multiple girlfriends. And she would have dreams that me and one of my "girlfriends" were trying to kill her.
And if I appeased these false stories, they got even worse.
For example, I was working with one of these ladies. Whom I didn't care for her or get along with her for the most part. I told my wife that I would avoid being alone with her at any cost. She seemed ok with that at first. But would later use that against me as well.
Heartbreaking. I share the pain of my friend whose wife didn't recognize him and would physically attack him but at least she did not attack with words which would have been worse.
@@kathym6603 fortunately, my wife is totally different now. She is happy most of the time now. Calls me daddy for the most part. Will ask about Don every now and then. Asks me every day who I am. The hospice nurses are blown away by her happiness and joy. They said it is unusual. She is however, starting to get angry again every now and then. You can see her go through all the emotions in a 1 minute period.
Thank you for sharing your story. ❤
11:50 As caregivers are not aware of medical issues. We STILL see them as our family members! Some of us, are not healthy enough to handle these events once they get aggressive, combative.
Thank you for sharing all these.😊
Thank you for sharing your journey❤️❤️
My partner has dementia too. If it is just the two of us, he is calm most of the time. He does not want aides to do anything for him and can become physically combative with them so I do everything. I need the aides a couple of tines a week anyway so I can go to the grocery store or personal appointments. The medication does not help much. Either too strong and he sleeps all the time or not enough. I am reluctantly considering some kind of facility as I think my own health is starting to be affected.
I feel im in the same boat. My sibling also wants to stick too me like glue. She started a fire . Long story short, how long can i keep up . The financial strain , emotional and spirit in me sure is trying .
1163 views....few comments.
Lots of people helped by this story(reality) Micky.
Words are tough to come by when in this distress.
Incredible! Hugs
Great video.
Thankyou for sharing.
Good information.
Some people will advise you to abandon your parents/spouse/loved one when it becomes difficult to care for them. I think you should abandon these people instead.
could not agree more
God bless you for showing this video…..
A woman in the nursing home believed one of the male residents was her husband and she would yell at him when he talked to other ladies. They had to transfer her.
What a touching story
How do ordinary people afford putting their spouse in a Memory Care home? My husband has dementia & I can’t imagine getting enough money together to afford this.
Medicaid will help once assets are exhausted. Start talking to Nursing homes about it so you're prepared. The reason some people divorce is to exhaust assets and be ready for nursing home care. There is a look back period. California and New York is 2.5 years, most of the other states is 5. Learn about this. I had no idea.
Thankyou.
What was the book that Mickey mentions that she was hesitant to read? Many of your guests mention books that have been so helpful to them and I didn’t see this one in your comments.
Unfortunately, I'm also finding out poor planning for Long Term Care is the other issue in the struggle of caretakers.
This disease is horrible. Our stories are not too dissimilar. I'm sorry this happened to you and your husband.
God bless
Dr. Natalie,
At what point do you request an MRI or brain scan?
Also, are there more medicines than just Arecept?
My husband is probably in stage 3 of dementia.
What words of support can you offer to Micky?
What you did for your husband was of measureless value and what you have done by sharing your story extends your caregiving to countless others - THANK YOU ☺️
What is the criteria for in house hospice ? My Mom is on home hospice .
What is the name of the hospice book?
I believe they get dizzy and fall in the very early stages. You might not even call it a stage at that point.
Aricept is a common drug prescribed to people suspected to have dementia or Alzheimer's, and only during the initial stage as it will not have any effect later on. Side effects, along with the huge cost, are common. Most of the drugs they give these residents have huge side effects, making it appear that the disease is causing these issues, when in fact it is the drug itself. Please read all the side effects from everything prescribed, and I'm sure you will be shocked.
Does anyone or have any idea what to do when someone with dementia refuses to take his/her pill medication? As for Tylenol I got my mom Tylenol syrup for children in which I double the amount given to children but what about other medicines like cholesterol , diabetes, high blood pressure etc that all elderly suffer from one or two of the above.?
Crush it up and mix w their food?
@@yvonnerojas5737 thank you for your reply I appreciate that
@@yvonnerojas5737 some medication 💊 should not be crushed. Please remember to ask Dr.
@Sj please ask the pharmacist for recommendations how to give the medication 💊
Some drugs should NOT be crushed.
never ever force them
The moral of the story is don't leave things too long and listen when experts tell you to place your loved one
👍Agree. Planning throughout our lifetime for our old age, AND, for our final arrangements.
Yes, it's so hard to let go. We have so much hope.
Cant hear
Lying...A road in darkness...sometimes the dark is your friend.
Jesus should be your best friend....
Rebuke the darkness
Rebuke the devil
@@chelongogan3904 all religion is a cop out, a give up to not learning. There is no data or evidence beyond story books for religion. Scientific method is the way out of darkness.
That’s so sad
I’m shocked with the future issues discussed here. My Dad may forget how to walk and swallow? This is awful. I always tell my Dad the truth but I’ve been told that nursing home staff lie and say to my Dad that someone is coming to visit when that’s not true in order to get him in the shower. I cannot stand the nursing home he resides.
And the government gives the Ukrainian and Chinese and refugees so much of are money
Divorce? 💔💔 Terrible advice!!