Dementia Spouse Hates Me

denver pamo

My relationship with my husband has gone down hill since he got diagnosed with cognitive impairment.  He is extremely unhappy and anxious to the point where he developed BFRB in the last 16 months.   This weekend I saw that he was googling "I hate my wife".  He has little support than me and friends that I have made and maintain relationships with.  I do everything for him.   After I saw the google search, he said he was just angry with himself and that was mean and it is not true.  However, I suspect that is not the case.   Have others experienced this?

MrsAnnabelLee

I'm so sorry you're experiencing this. Yes, this is a familiar feeling among us caregivers. Understand that he still very much loves you, but unfortunately caregivers like us become the face of the interventions that have to happen in order to care for our loved ones with dementia. It is impossible for someone to appropriately place their anger with the disease, because they often do not recognize the disease within themselves. Instead, they channel it toward us because we are the ones stepping in and making the necessary changes in their lives to keep them safe and healthy.

My mom, who I know loves me with all her heart, had many notepads she kept around the house. One day I found one with instructions for her to call a lawyer and have me removed from her will because I couldn't be trusted. She wrote that I was out for her money. It was so hurtful to see. Like you, I was her only support and I did everything for her. It felt like a slap in the face. But also like you, to my face my mom always expressed love and care. 

Try to see his email not as a personal attack, but a way that he was just trying to release some of the tension, fear, and confusion he is experiencing because of his disease.

CaringMate

Denver, what you experienced is all too common with dementia patients.  If your husband was used to making the decisions during your marriage and now you are in charge and as you say, doing everything, it is sadly sometimes the only response they know.  My partner who suffered from FTD told me everyday how much he hated me and wished me dead everyday during the last five years of his disease.  It wasn't until nearing the end when a medication adjustment was made that he told me how much he loved me.  Hearing those words prior to his death is just about the only thing that saved my mental and emotional life.  He/I suffered for over 10 years with this disease and I asked his neurologist why virtually every word out of his mouth was negative and was told that is what a dementia brain will do.  It goes to the worst and most dark place and doctors are at a loss to understand why that is.  I can tell you not to take his comments or behaviors as a personal attack, but while it's happening it is extremely difficult to brush it off.  I got in the habit of reacting to a verbal attack by saying " thank you honey, that's a lovely thing to say."  My response confused him and prevented more verbal attacks in the moment.  It didn't stop him from attacking me as his frustration got worse, but it diffused a situation that could have escalated in the moment.  All caregivers need to develop very thick skin if they are to continue to provide care.  Change how you react to the harsh words and with prayers, this will get more manageable for you.

Good Intentions

MrsAnnabelLee I really like your response because something similar happened to me, I walked into my relative’s apt. after flying out to see her and she looked at me and said”Why are you here? Leave”! out of the blue. I am the only one who takes care of her and visited long distance many times during the pandemic, she asked me years ago to have POA etc. I told her I loved her, stepped out and bawled, it was so unexpected and different for her. It makes helping with her financial and medical, senior living decisions SO much harder. I think she knew that years ago and tried to put things in place. It is devastating for a caregiver though. Just know we understand and are pulling for you all

Jo C.

What a stunning thing to have read; I am sorry.  However, this is not an unusual occurrence; if you Post on the Spousal/Partner Forum you will get a good amount of input on this dynamic from other spouses who have experienced it.

(For those who did not know; BFRB means "body focused repetitive behavior," which can mean anything from picking at one's skin, or hair pulling, or nail biting or other such repetitive behaviors involving ones body.)  BFRB can often be a manifestation of anxiety and/or depression.

Our Loved Ones (LOs) have such a difficult time with feelings and failings  as well as fear and all that comes with such angst which is difficult for many of our LOs to define for themselves much less manage and it can focus outward elsewhere.  Frustration, fear or anger and grief with a brain that no longer processes as easily or well at all depending on where a person is within their disease can also be involved.

It is best if we watch ourselves and our words, tone of voice and even facial expressions and body language as our LOs pick up on our feelings and moods very easily.  They are no longer living in the same world reality scope and capabilities as we are, so we must be able to enter their sphere of reality to understand and adjust as needed. 

We must also not be demanding or inadvertently asking them or telling them to do things that are getting harder and harder to do and we may not realize it. Never expect them to "remember" anything we tell them or "instruct" them about; that all goes into the damaged brain and is not processed well as well as memory, logic and judgment becoming more highly compromised.  It takes longer for our LOs to process information and action; this can intitially so subtle we do not realize it but our LOs are feeling it even if they cannot identify the feeling.

It all simmers together and can come out directed at someone - usually the person doing the most for them.  It can be difficult, but extra hugs, affection, positive feedback can be helpful to get over the worst of this state of affairs which will eventually pass.

Even though we know the brain is damaged, it is still hard to have something that hurtful directed at us.  This is the point at which we begin to learn to let go, (that is a big one), and love them for who they are in the moment, (even though our LO may sometimes not very loveable), and not for who we want them to be.

Many of our Members have reached out for counseling which can be helpful in supporting ourselves.

This difficult journey puts a lot on us; helping our LO to have daily routine and structure in the home; assessing their abilities and not asking too much for where they are at; looking not so much at what they say, but rather the feelings behind the words is important.  One of the important dynamics is to validate our LOs feelings - again, not so easy all the time but it really does help much of the time.

It would be great if you can get out and get some respite time away now and then, it can be helpful even if one does nothing more than sitting in the car at a park or beach or a sitting in a mall and watching the people go by. It is just about being able to get some breathing space.  If his anxiety and/or depression has increased and he is suffering from it, then it would be a good thing to have the doctor assess him and perhaps prescribe something that may help him. If you have a dementia specialist, this is something to be addressed.

Your husband, if he was not compromised, would tell you how much he appreciates and loves you; this is not about the reality of you, it is about his feelings that he no longer has the logic and strong weapons to deal with.  (Remember thinking sometimes when we were a child and in the moment  "hating" a parent?  We did not mean it, but it was the passing feeling.)

A good read to gain a deep understanding about all of this, is to Google the excellent writing of dementia specialist, Jennifer Ghent-Fuller; it is titled, "Understanding the Dementia Experience."  Google the pdf version. It is about 30 pages long and can be printed off free of charge. It is one of the best writings and explains each stage and the "whys" things happen. It is also good to send to relatives if there is not a good understanding of dementia.

You are a loving person and are doing your best; let this one go and know that it is not meant in the way the words sound and do present this on the Spousal Forum, it will give some good input from other spouses in the same situation.

J.

Iris L.

My suggestion would be to markedly reduce verbal communication.  A lot of words trigger PWDs, because they can no longer respond in kind with nuanced conversation.  They don't have the capability of putting a coherent string of words and phrases together to express their dissatisfaction with the situation they are now in.  "I hate this situation because da da da" becomes "I hate you!"

Use more nonverbal communication and keep things calm.  Avoid arguing and wanting to set things straight.

Iris L.

dayn2nite2

As primary caregiver, you will always be the hated one.  The only time you may see that change is if you place him.  Then he will hate the aides and you'll be a friend again.