How do you not take it personally?

SATX

The roommate that I'm now with is not the one I fell in love with and married 40 years ago.  Kindness, caring, passion, planning, and creativity have been replaced with anger, suspicion, depression, passive aggressiveness, and demanding.  It is killing me.  I'm 5 years into this journey but the sudden changes in the last 8 months in her personality are awe-striking and repulsive.

Suggestions and coping mechanisms?

Crushed

Read deeply about what dementia does to people's brains . Our brains are who we are . A broken brain is not the same person.  You may feel (as I do ) have care obligations but you can no longer think of them  as the person you fell in love with. That person is gone and is not coming back.  That loss can occur before or after they lose understanding of who you are.  For me it was over three years ago.  Therapy helps.  So do support groups.      

Once you accept that it really is a "stranger"  Interaction  becomes easier.    The grief and mourning what is lost can be overwhelming,  but recognizing that the loss has occurred keeps you from sinking into the black pit

 

DrinaJGB

Eleven years and counting. My DH of also 40 years came home a complete stranger after months in hospitals and coma on life support (viral brain injury). It was horrific. His personality was angry, belligerent and at times combative. I thought I would lose my mind. Slowly, slowly it has become more manageable over the years, either that or I am now used to it. There is no insight to how things are on his part. He thinks everything is fine. I am the one holding everything together. He has no interest in finances, maintenance, repairs, or any kinds of setbacks that occur in our lives.He has no alarm system in his brain and if there is an emergency he does not respond. I have fallen and called for him but to no avail. My dog helped me get up.There is no empathy.  I am handling it all. It has taken a toll on me physically and emotionally for sure. I still dream about him being the way he was only to awaken and find it has not changed. I am nurse, accountant, legal assistant, cook, housekeeper, errand runner---you name it that is me. I have changed enormously over these years, but all I can do now is find something each day to be grateful for and I keep on going. There really is no other choice, but it is very often a very lonely place to be. I miss him every day. It is a long road and you are not alone in your journey.

Ed1937

Hi SATX. Welcome to the forum. Sorry you need to be here. There are some good videos on youtube dealing with many things dementia related. My two favorites are "dementia careblazers" and "Teepa Snow". Check them out for some very good tips on dealing with difficult issues.

Pathfinder52

Dear SATX --

You asked for Suggestions and coping mechanisms? 

Here goes. . .

• Drugs -- for the patient they can sometimes soften the harsh edges of personality changes AND for you (the caregiver) they can relieve the anxiety & edginess that may indicate you're slipping toward depression yourself!
• Daycare -- yes, it may be a fight to get there but, I was delightfully surprised that given an audience of strangers at the center, my hubby became a delightful, conversive, even entertaining participant at the daycare center -- worth the $$ investment!
• Respite --  there are facilities that will work with you for a week-end stay, a week-long stay or even more.  This can buy you the time you need/deserve to think, plan, relax, enjoy the company of others and figure out what you can and cannot endure.
• Support -- whether that's therapy, a group of other caregivers, a health coach or some other trusted professional.  Don't try to do this alone -- you need and deserve the support.
• Placement -- I know it is the toughest decision but, if the relationship is becoming so stressed and strained that it could lead to abuse or neglect (and there are far too many stories where it does) please find suitable placement and move from caregiver to "visitor" for your own sanity and your loved one's safety.

Wishing you all the best.  It doesn't get easier. but you CAN make healthier choices.

--p

Iris L.

Read about anosognosia.  It's real.

Iris L.

M1

Drugs is the first thing that came to my mind too. The atypical antipsychotics like Seroquel can be very helpful for the behavioral changes you're describing. Might improve quality of life for both of you....

Cinsababe

It is sad and hard. And because my DH cannot fathom that anything could possibly be wrong with his truly brilliant engineer's mind, it must all be my fault...his new wife of two years. I guess that makes him somehow feel better. This evening he declared that he wished he could go back to when his life was wonderful and happy and full...before he met and married me. Yep, that is what he said. Right while I was serving him one of his favorite meals I cook. 

I wish he could go back too. I wish he could drive again and remember his friends' names and how to call them and do facebook. I wish he could handle all of his finances and people didn't take advantage of him like the cousin who begged and borrowed $20,000  over a whole year that he didn't really have. I wish he could tell a joke beginning to end and laugh at the punchline again. I wish he could remember how to tend the flower garden he loves and have the strength to do it. I wish he could remember how he charmed me and how much fun we had. But alas, all he knows is how unhappy he is now and that doctors are saying things that can't possibly be true. And even though I often cry, I am glad I can be the soft pillow where he lands because there isn't another person on this earth that would put up with his crap!

storycrafter

It takes a team; we can't do it alone and need to develop a support system, reaching out until we get some things in place. Even a little support makes a lot of difference; doctors, counselors, support groups and people who understand, reading and self-educating, accepting help, etc., check out your local Agency on Aging for local resources/counselors/groups/daycare.

In our case, dh has FTD, slow progression. Anti-psychotic meds, and a couple others, have given him back some quality of life, in that it moderates the mood swings somewhat, helps him sleep better. With some tweaking now and then the medications have been a life saver for both of us.

I seek outside distractions and support when/where I can-online and in-person, have learned some mindless things like jigsaw puzzles and sudoku/sumdoku; dabble in a craft/hobby on occasion;  practice a spiritual program to detach with love - takes constant work and intention/awareness, recalibration, reality checks/regain perspective with compassionate others familiar with the practice of healthy boundaries, self care, and loving detachment.

It's not easy, but it's worth working at it until you find things that help out to a certain extent. Working with feelings and the on-going, constant grief process has become an important daily part of my life. You're not alone and there is help. Hang in there!

Rick4407

Hello SATX, sorry you have to be here.  I've been on this road for about 5 years.  My DW had moved into the same area yours sounds to be in about 3 years ago.  I was insistent with her neurologist about the agitation and my DW was prescribed a very light dose of seroquel.  Over the next month that increased to 25mg (still a very light dose) but it really controlled her afternoon/evening agitation.  Lost memory continued and worsened but her agitation went away.

There is no treatment for this disease but an experienced neurologist can treat the symptoms.  It sounds to me like you need to pursue a drug to help with her agitation.  Good luck.  Rick    

LadyTexan

Welcome my fellow Texan.

You have received very good suggestions.

It is hard to not take it personally. For me, NOT TAKING IT PERSONALLY is a survival mechanism. Over and over I remind myself his brain is broken. Specific strategies I use to not feel so hurt, defeated and unloved: 

• I REPEATEDLY  remind myself his brain is broken & his harsh words are the disease talking.
• I use positive self talk. I remind myself that I am doing my best under stressful circumstances.
• Sometimes I think of DH as a faithful dog that has been hit by a car. Because he is suffering and in pain, the dog tries to bite his human friend. The dog still loves his human friend, he is scared and hurt and responding in the only way he knows how.

Most importantly for me, I actively practice gratitude. For example, when DH is especially verbally harsh, I reframe my thoughts:

• I am grateful that DH is still verbal. 
• I am grateful that DH can express his thoughts. 

Again, welcome. I am sorry you have a need to be here. This forum is a life saver for me. The folks here care and understand and generously share their wisdom.

SATX

Thanks to you!  Everyone has helped me.  I'm especially encouraged by the thought that I am not alone in this journey.  I guess misery loves company as the cliche goes.

A followup... how do I locate an in-person spousal caregiver support group?  I'd very much like to have time with fellow travelers.

Paris20

 https://www.communityresourcefinder.org/

SATX, the link above is from the alzconnected website. It really is excellent in helping us navigate this path that no one wants to travel. 

To answer your original question, how do I not take it personally, here’s what I found. I often DO take it personally. Words hurt. When my husband says there’s something wrong with ME, that I am the one who has changed, I want to scream. When he loses his balance and falls, he tells me I put something in his way, when there’s nothing in his way. If I try to help him up, he yells at me that he doesn’t need my help. Yes, it hurts but I try to master my self-control and try not to engage in any argument or debate. The key word here is TRY. Sometimes I succeed but sometimes I don’t. It’s best to find ways that you can calm yourself down. You may have to leave the room or try to change the subject, IF you can 

Don’t beat yourself up for your very human reaction. Yes, your husband’s brain is broken but yours isn’t. You’ve received some good information here. I hope you find some help and some peace because you cannot go through this miserable process alone. Take it from me. I tried to do everything myself and wound up in the ICU for a couple of days. So, don’t do what I did. And remember, whatever you say to your husband will soon be forgotten.

Doityourselfer

Know that you are doing the best you can.

Crushed

Paris20 wrote:

To answer your original question, how do I not take it personally, here’s what I found. I often DO take it personally. Words hurt.

let me try

Words don't hurt.    If you drew  scrabble tiles that spelled MORON  You would just be distressed at the low point score  compared to lets say JEZEBEL So its not words it is the intent or meaning  behind the words. What you are having trouble with is believing the words are gibberish. But they are. they are produced by a broken word machine in the brain  .  there is no meaning to the words
My mother had vascular dementia.  She could fling "I've always hated  XXXXX   anytime.  But it had no meaning    Once she was wolfing down ice cream saying "I always hated ice cream." 
 
 Best I can do

White Crane

Dear SATX, welcome to the forum.  You will find a lot of help, support, and understanding here.  It's hard not to take it personal!  It hurts!  For me it boils down to acceptance.  When I can accept that DH brain is broken and he is not in his right mind, it doesn't hurt so bad.  It is still hard, but I can look at him with love instead of anger. 

 The suggestion about drugs is good.  When I first began this journey, I promised myself I would not resort to giving DH drugs as I didn't want him to be doped up.  I soon learned that drugs can be a lifesaver.  DH wasn't sleeping and that meant I wasn't getting any sleep either.  Now he takes 25 mg of Seroquel before bed and sleeps through the night.  He also takes a very small dose of Ativan each day for anxiety.  That also helps.  And while he gets tired during the day, he can still function.

Once again, welcome to the forum.  I'm sorry you need to be here.

Gig Harbor

Let people know the city you live in. I used my city in my site name and two ladies contacted me as a result of seeing it. That was 4 years ago and our group now stands at 13. During Covid we met on Zoom but started meeting in a church, a restaurant and now in a park. Whenever we see someone with a partner who obviously has dementia we invite them if it is possible. Some stay and others only come for a few meetings. You might see if there is interest by checking on Facebook or NextDoor or with your local YMCA. It may take awhile but it is worth it.

SATX

Gig Harbor,

Thank you!  Great suggestion.

I live in San Antonio and would love to visit with other spouse caregivers.