How do I accept that my husband has lewy body dementia and hold my temper with him?

A Caregiver's Guide to Lewy Body Dementia by Helen Buell Whitworth is an excellent resource. My mother cares for my father at home. He is still able-bodied and continent. The most difficult symptoms are his delusions. I know you are supposed to agree with dementia patients but my father's delusions involve all the male neighbors raping their children or other neighbors. He is also a member of the secret police (shh, don't tell anyone) and he kills nuns by falling on them. I try the redirecting techniques but the talk of the neighbors is pretty constant. Sometimes he goes out (we are lucky if he puts clothes on) to save a neighbor. This usually occurs when my mother is in the basement doing laundry. Other delusions are that my mother is out banging her (insert racial epithets here) and that she is going to send him up the river so she can la-di-da with her boyfriends. He's tried hiding the car keys so she can't go out. I live in another state and visit frequently to spell her. Luckily they have very kind neighbors and a lovely retired nurse who comes eight hours a week to give my mother a break because let me tell you it's exhausting. Just keeping him fed, he wants five meals a day with meat and ice cream. And yet, at 6'3" he's only 145 lbs. This was not helpful was it? I guess I am trying to say that I understand it's not always easy to keep your temper.

There are going to be the little things that have always got on your nerves as well as the new behaviours brought on by the disease. Frankly I get tired of all the advice telling someone to remember it is the disease and to never argue with dementia. On an intellectual level most of us understand that, but I think it is unrealistic to expect to never over react in a negative way.
Examine what your "triggers" are and try to find ways to avoid or modify those situations if you can. (For example, when my mom's incessant calling gets on my nerves I will put in earplugs or better yet leave the house for a walk around the block) And as Gndma1954 has mentioned, get support through frequent respite/home care/support groups etc. so that you aren't trying to give care while running on empty.

@Grandma1954... Thank you so much for your response. My mother is caring for him alone. Keep in mind he is ambulatory and able to do most of his own care, like showering. He is also capable of helping around the house. He just can't drive, manage the check book, stuff like that. She is able to leave him alone at the house. They are not housebound.

I am an only child, work 6 full days a week, and do the best I can to help. My parents very carefully moved away from and alienated all other family members so now they are very much alone.

My parents have a "Cadillac" Long Term Care insurance plan that they've been paying toward for over 20 years. It even pays for in-home help such as house cleaning, meal preparation, etc. We got lucky, a few months ago the doc's referred Kindred At Home to come to the house to give my dad occupational and physical therapy. There were additional services offered, that would have been PAID FOR by the LTC insurance.

Well, mom told the Kindred people they were intruders into her home. The KIndred nurse told me they kept the visits to the bare minimum because of my mom's behavior. Mom is worried about important things like, you know, someone might track dirt on the carpet. Evidently one of the nurses left a wet Q tip on a wood table and it left a mark. Mom was livid. So, she ran off what was a great source for in-home help.

Now they sit, all day, in silence. I am at my wit's end of what to do. Mom just wants to put him away in a nursing home and he's no where near that bad yet. I told her that her Long Term Care policy won't likely pay for a nursing home just because she no longer likes him.

I asked him this past weekend if he would rather stay there or move somewhere else. He said even though she's very mean he would never think of moving away from her and their home. It's so sad!!!!

@Upstream...
Is your Mother caring for your Father by herself?
It sounds like she may be overwhelmed.
And is your Mother going to a Support Group? That might help her a lot.
Is your Dad a Veteran? If so there are programs that they may qualify for, Adult Day Care, Respite, Homemaker Help, and there is a program called VIP that is Veterans Independence Program it is designed to help keep veterans in their homes. Someone comes out to assess the needs and a "budget" is established and the money is used to pay for caregivers, someone to do yard work or clean the house. It does entail a bit of paperwork but well worth it.
If things don't improve for your Dad's sake I hate to say it but it almost sounds like your Dad might be better in a Memory Care facility than at home

My dad has dementia (doctors have varying opinions on what type). My mother is verbally just horribly cruel to him. She forbids him to watch TV, so he sits in silence all day. Anything he says, she pounces on him. I have seen the worst behavior from her. It's the opposite of what you should do. Please be patient and speak kindly. Close your eyes and take a deep breath, think about the things you say before you respond. Don't speak to him like he's stupid. My mother loves to loudly declare "he's an INCOMPETENT!!" in his presence. Please let him do small tasks and if they are not done perfectly, move on. If you are lucky enough to get some home health care, be grateful and take full advantage of it. We lined up home health for my dad and mom told them they were an intrusion into her home and she ran them off. Basically, what my mother is doing, do the opposite. When my dad is gone, my mother will likely have 2 decades to mull over her horrible behavior. She is 74 and her own mother lived to 96. Think about how you will reflect on your behavior in the future.

For some time now I have come to believe that Dementia is one of a few diseases that remains a dirty little secret. In recent years society has become better educated and therefore more understanding of diseases such as AIDS, Hepatitis C, Psoriasis and even Herpes. But not Dementia. There's a line in the movie Still Alice - about a woman with early onset Alzheimer's- where she says "I wish I had cancer" siting the existing social stigma she deals with from having Alzheimer's. Robin Williams had Lewy Bodies. Famed DJ Casey Kasem had Lewy Bodies. But I'm betting not too many people- even here on this site - are aware of that. So - my point as I stand on my soap box? Help will only become available on a larger scale when Dementia comes out of the shadows. Given our aging population, why are there so few Geriatric Psychiatrists? Why is Medicaid mostly restricted to Nursing Homes and not more Assisted Living and Independent Living Communties? But until people wake up to the fact Dementia is an Equal Opportunity Employer, what can you do? Research, make phone calls, internet searches - ask questions and do not be shy about asking for help from agencies and associations dedicated to the aged, disabled, dementia etc. If you have close friends and family - help them learn and tell them how to be helpful to you and your husband. And if all else fails - you still have the caring, generous people here on this site who will do their best to help. You are not alone.

A dear friend posted this on his Facebook page the other day, and it was a reminder for me: A person with dementia is not giving you a hard time, they are having a hard time.

Sometimes I need to remind myself of that, as I get caught up in some endless loop argument with my mother.

All these comments have helped me as I deal with my husband's new diagnosis of Mild Cognitive Impairment. He's just not the same guy anymore, and I have difficulty remembering that. Thanks, everyone.

Good points above.

I agree that I would read a lot about end of life decisions. Does your husband have a Healthcare Directive? Did he want tube feeding? I'd try to reconcile how this refusal to eat may be part of his illness and the tube feeding is not without risks and may not increase his longevity. I'd try to honor his wishes.

I also would try not to put unrealistic demands on yourself. This is perhaps one of the most challenging things to handle in a person's life. Caring for someone with his condition in the home is a HUGE responsibility. The behavior of a dementia patient can be exasperating. Who wouldn't struggle with this? Maybe, you are expecting too much from yourself. Maybe, with help, you could have time to restore your resources and recharge your batteries. Then, you can devote more quality time with husband later on. I'd explore getting help. I'm not sure how much you have, but, 24/7 duties will wreck your mental and physical health.

I would imagine that it's very sad to realize that you may not be able to make a dementia patient happy, content or stable. It may be something that is just not within your ability to do. It's not your fault.

You sound like a wonderful and loving wife. I wish the best for the both of you.

I learned many things dealing with my husbands Alzheimer's. One that I learned early on, and the most difficult to follow through with is...You can not argue with someone with dementia, you will never win.
If he can respond have you, during a calm time sat and discussed this with him?
Have you explained to him why it is important to you that he keep his strength up?
Have you allowed him to express his feelings as to why he does not want to eat? If he tells you it is because he does not want to live you need to validate that and understand what it must be like for him.
And at some point he may ask for the feeding tube to be removed, this is also understandable and as it gets towards the end of his life he will not need food or drink. To keep giving him food and drink it can create more problems. Obstructions, vomiting, and in some cases the food will sit in the stomach undigested.
If you have not had an "end of life" discussion with your husband and his doctors it might be time. If he has then you are a step ahead of many. At some point you might want to contact a Hospice to determine if he qualifies. You will have a great resource to help you and your husband with some very tough decisions.

When it's hard not to lose your temper, imagine that the situation is reversed and that it's you who has the LBD. Putting yourself in his place can be traumatic, but it can also be enlightening, and help deal with the frustration.

An absolutely great source of information is the LBDA organization's web site.

Thank you, i am in the beginning of this journey and dont really know what i am in for. We have been fighting for a year about not eating, after much weight loss we had a feeding tube inserted for nutrition. I felt like i was just watching him die. Now he doesnt want to even drink ensure. He wants us to do it all by tube even though there is no physical reason for him to not eat. We do have a good day then a few bad days where he just wont do anything.
I need to find a place for information, i feel like i am alone in this.

That can be a challenge, especially since Lewy Body fluctuates so dramatically. If you go along for three days with him behaving "normally" and on the fourth day he does something foolish, it is natural to want to react as you would have when he was "normal." I found it easier to be patient when he had many bad days in a row. Then it is hard to forget that he is impaired.

I found it helped to learn all I could about the disease. Reading and seeing pictures of what the damage looks like in the brain was useful. My mantra became, "This is not my dear husband. It is the damage in his brain."

We called the disease Lewy. More than once I apologized, "Oh honey, I'm so sorry I hollered at you. I'm really not mad at you at all. I'm mad at that darn Lewy."

I went on the Lewy journey with my husband for ten years. I know that it is considered to have one of the highest caregiver burdens, because there can be many behavioral symptoms and they tend to come on very early in the disease.

It really, really helps a lot if his doctors are very knowledgeable about the disease and can explain things to you.