how do i deal with coping

crabby43

my husband was just diagnosed with dementia.  i am very frustrated watching him struggle with day to day things that up until a year ago he had no problem with.  i feel like i have no patience left.  some days are good and some days are terrible. 

who do i talk to?

jfkoc

You talk to us!!!

We care...we understand...we share ideas/possible solutions and collectively we are a wealth of information

It is not possible to over estimate the depth of the emotions we  encounter. Your life has changed and one piece of advise that was given to me was "have no expectations". 

I hope that will help you too.

crabby43

thank you for your response. 

it is so overwhelming.  i  hate to burden anyone with this.  my husband has early onset dementia and is still going through testing.  i work full-time and i am terrified when i leave him home alone.  he falls, he won't wear the button (i've fallen and i cant get up), he forgets names and where he is going sometimes. and i get so angry because he fights me when i tell him what to do.

SunnyMae

I'm new to this board so recognize your frustration and need for help. 

I suggest asking the providers who are doing the diagnosis to connect you with local support  resources like social services. It sounds like you will need to be creative to keep him safe - take the keys to the car away/disable the car, use air tags to keep track of him (?), take the knobs off the stove. 

I'm trying to learn to not argue or try to convince mom that she is wrong about something or that her judgment is flawed, and that is one of the hardest changes in the relationship with her. 

LaurenB

 https://www.alz.org/help-support/resources/helpline

Follow this link and you can call 24/7

GothicGremlin

Hi there crabby43 -

My sister was diagnosed with early onset in 2018. All of this can be overwhelming.

This forum is a great resource. A couple of other resources I found very helpful are:

Understanding the Dementia Experience by Jennifer Ghent-Fuller

https://www.alzconnected.org/uploadedFiles/understanding-the-dementia-experience.pdf

Somebody I Used to Know: A Memoir by Wendy Mitchell

https://html.duckduckgo.com/html/

Understanding The Dementia Experience helped me to learn to get into my sister's reality, so that I can interact with her.

Wendy Mitchell's book is great because she has early onset Alzheimer's herself, and tells us in her own words what that's like.  Lots of good insights.

SusanB-dil

Hi crabby43 and SunnyMae - welcome to 'here', but sorry for the reason.  Yes, some good advice posted for you, and yes, this can be overwhelming, for sure. You have found this forum, and I'm not sure what I would do without this excellent resource.  Check 'solutions' tab above and check out 'Archives' for anything specific you may be wondering about, and continue to post here. We are all in this mess together.

crabby43 - do check out any adult day-centers near you for daytime care. 

Two 'rule #1's'  Do not try to reason with him.  The reasoning is broken and it only leads to frustration for both of you.  The other rule #1 is to make sure you take time for yourself. Make time for a break once in a while.

I also agree about the car. Is he still driving? You can have the car 'disabled', and that there is a recall, with the part on back-order. Repeat as necessary.

I think all of us HATE 'this'.  It is frustrating, overwhelming, demanding... etc, etc........

crabby43

thank you for the sound advice.  his doctor recommended that he not drive until he takes a special test, but he threw a "fit" when i even brought this up.  he still knows basically where he is going when he does drive but he is becoming more dependent on me and his friends to take him somewhere.

crabby43

right now the major issue is incontinence.  he just cant make it to the bathroom fast enough.  we have tried adult diapers which he will wear on occasion but insists he does not need them at night.  

the funny part of this is we have a 17 year old jack russel that sleeps with us and she is incontinent too and her diapers fall off in the middle of the night.  so last night they both had accidents.

i have started researching resources but we are still in the "testing" phase with the doctors. I am also looking into independent living versus assisted living.

RoyA

We have been on this journey for the past couple of years--it is so exhausting.

I just found two presentations by Jennifer Ghent-Fuller on Youtube headed "Thoughtful Dementia Care" and have now watched them for the second time. She is terrific and has really helped me to really understand what happens at different times and how I might handle the situations. I have also sent the link to our children and grandchildren who have watched them and found them to be an excellent resource to help them understand what is happening the Mom/grandma and how best to communicate with her.

The video quality is not fantastic but the Quality of the content is much more valuable than   many of the books that I have read.

Martin Robbins

Remember these:

crabby43

thanks you all for sharing.  last nite we went for two MRI's and an ultrasound.  Hopefully with more clarifying results.

CanyonGal

crabby43 wrote:

thank you for your response. 

it is so overwhelming.  i  hate to burden anyone with this.  my husband has early onset dementia and is still going through testing.  i work full-time and i am terrified when i leave him home alone.  he falls, he won't wear the button (i've fallen and i cant get up), he forgets names and where he is going sometimes. and i get so angry because he fights me when i tell him what to do.

My mother, when she was living in her home, refused to wear the help watch or necklace. She would not even test out the device (which you are supposed to do yearly) to see if the devices were working. Everything was a battle, no cooperation. 

I sensed some of the problem was her refusal to accept she was having memory problems. Many people with dementia are in denial of their condition. The anger is sometimes related to the sense of losing things that define their independence - the car, calling people, to even not remembering how to make coffee.

She could not drive because after a fall where she ended up with a brain bleed (concussion), the lens from a prior cataract surgery was damaged. That was my excuse for taking the car keys - you can only see with one eye and also the doctor said you failed the eye exam at the DMV. Eventually the license expired and with 2020 lockdowns, the acceptance that driving was over.

When we moved her into Assisted Living, the facility provided the emergency necklace, and since everyone was wearing one, she adapted. (Plus she was terrified of having another fall.) The car was sold during 2020 as no one was driving it.

She is in memory care now. Each stage brings loss of knowledge of how to do things and it is heartbreaking to me.

Thel

How do I deal with all the anger and name calling, he never had before. Every day, he forgets, but I'm left to remember.

Bob in LW

crabby43 wrote:

  his doctor recommended that he not drive until he takes a special test, but he threw a "fit" when i even brought this up.  he still knows basically where he is going when he does drive but he is becoming more dependent on me and his friends to take him somewhere.

 

Since he has been diagnosed with dementia, he should not be driving at all.  That is usually the most difficult thing for a PWD to give up, but it's necessary.  If you discuss it with your attorney, he will most likely advise you that if your DH causes an accident, YOU will be personally liable because you were aware of his dementia and did not keep him from driving.