I ask my husband: "Are you finished in the kitchen?" because he doesn't like anyone else in the kitchen while he's preparing something. He'll say "You know I'm not. Why do you have to be so mean?". After that exchange, disgusted look included, I'm in the dog house; a very bad person who is ignored and prevented from access to common areas by his tying up use of things we usually share. Some dirty looks continue, but mostly he avoids "seeing" or interacting with me. Decisions that should include both of us are stalled, or I make a necessary decision which he sometimes hates, sometimes doesn't realize I've made one. Grudges will be held weeks or months later (or so it seems from the way I'm treated).
My husband won't recognize any impairment on his part to me. He has admitted this to his mother. He likes to be in control, thinks he's always right, is quick to complain and criticize me and our one son at home. Sons who don't live at home are treated like normal people as in the neighbors or any other acquaintance. I don't think he likes himself very much.
How can I handle this better?
If this is new behavior, then I would try to seek some sort of medical intervention. Not sure how you would handle this and maybe one of the adult children could take the reins here. Definitely need to let his doctor know about this new development.
If this is the same as always, maybe just more pronounced, I still might think there was a medical event. Maybe a small stroke or something.
This isn't a good situation for the child at home either.
But, how to handle your anger? I understand that many people find it helpful to write their feelings in a journal. Have you tried that? Or come here and vent. (Make it clear that that is what you are doing.) Stay in counselling!
As I'm sure your counselor has told you, try to avoid isolation. And as I'm sure you've discovered, circumstances conspire against you as you try this. Is there some regular activity your health will let you enjoy? Book discussions at the library? A craft club -- knitting or painting or beading? And then could one of the away-from-home kids stay with Dad for those times?
Do you belong to a caregivers" support group?
A book that you may find useful is "Loving Someone Who Has Dementia" by Pauline Boss.
Let him have the kitchen, you can take a brief stint outdoors.
You did not say how old, or what he is suffering from, and you dont have to.
We can control our anger, and at the times we can't, we go outside, or leave the room.
Keep getting out, and keep getting counseling, and share on here, like you just did. Do not turn your anger on yourself, because that will result in depression.
You have the right to be treated with respect.
Your husband's behavior is controlling, passive-aggressive, and he confides in his mother. This is disloyal, and for you, it is a can't win situation.
Stop sharing with his mother, share with your counselor.
Consider how you can help your son.
This is a very difficult situation, you can survive, don't forget to keep trying the solutions your counselor suggests. If you decide to stay, try not to torture yourself thinking if you should stay, or go. That wastes the time and energy needed to cope and apply helpful techniques. If you must leave you will know when that happens. They say, detach with love. Find out what that means to you. It can be an attitude that will help you stay and cope. Hang tough!
ccflorida, you are exactly right. But I'm not up to company very often. But I'm friendly when company comes.
txcamper, You nailed it, too. Husband has always has these traits, but maybe 5% of the time, growing to 20% as he aged, then with the dementia it shot up to 97% of the time. He's had an MRI of his head with no stroke noted. The son at home is 34 yrs. old. He's only home due to illness himself. I try to keep him out of the problems, but that's not completely possible. He's mature enough to handle it the best he can.
jeannegibbs, Thank you for your counseling recommendation. It helps reinforce that I need it. I did try journaling but I don't much care for it. Hard on the hands. Caregiver support group: you are it! No, I belong to another, can't find one near home but will keep trying. I'm intensely artistic and have many projects, but my depression and ailments make them hard to do. I do manage some...excellent suggestion! Thank you for the book recommendation, I'll probably get it. Isolation is very difficult to resolve with the health problems, but I won't give up. It's not my nature.
Sendme2help, Outdoors might be good, but not always practical for me. It's incredibly hot here most of the year( FL). I did put more detail in my profile story. My hubby's age is 66.5 yrs. and he's been in the 1st stage of dementia for about 7 yrs. You're absolutely right about leaving the room. Often I'm on a schedule when I'm trying to grab needed things from the kitchen. So it's tougher on me to stay out at those times. The kitchen story was an example, it can happen about almost anything, at any time. You're absolutely right I have to control my anger. Sometimes I'm so outraged at the unfairness I respond in anger too quickly. I have to learn not to do that...somehow!
I have had to explain myself before, and this is what I came up with:
"I would have to get better to be able to go for help!"
So, that is what I did. Got better! It can be a constant struggle for some.
Could you possible get a dorm size refrigerator and microwave oven to keep in your room? A coffee pot too?
I think you are handling the situation better than I ever could, so I have nothing to add. Just make sure there are no weapons in the house. We had to do that with my FIL. He would have TIA's and you never knew what the new normal would be. He did go through a violent stage and his doctor recommended a lock up facility for a few weeks until they could get his medicines straightened out. It made a world of difference. It was awful for his family while it was going on, but the aftereffects were well worth it.
I don't know if you are a religious person, but a lot of people find comfort in reading the Bible and prayer. If you have a word processing program with a full sized keyboard, you can journal on the computer. I can't write worth a darn anymore, no one can read it when I do.
Dementia has the bad habit of exaggerating the worst personality traits. I'm so sorry. At least you do have your son at home for company.
Thank you for your 2nd answer. My husband has dementia, which means he's not considered by experts to be in control of sensible thinking and speaking. I now realize I didn't put that in my question, only in my profile. I apologize. I thought I was on a dementia site. You are right, my husband is controlling and passive-aggressive. This behavior was minor at first but has increased to 97% with the onset of dementia. He's cut back down currently, but every moment is a new one with this disease. I only stay with him out of commitment and love for the man he was. "Through sickness and in health..." Which is exactly what he did for me in the past.
Depression is prevalent throughout many generations of my family. I had it long before he had dementia, though I'm sure he's responsible for some of it...making me responsible for how I handle his and my health problems.
I only "confided" in his mother when he got his dementia diagnosis. I didn't think the family would understand his behavior changes and I wanted to let them know. That's my one and only confidence with her. He travels alone to be with her a few times a year because she's getting pretty old. I always stay home to enjoy the peace.
I won't be torturing myself on whether to go or stay, rather it will be when he goes or stays. He's a long way from needing professional care but he also has cancer, which is in remission. I just take it one day at a time.
Thank you for writing. Good ideas!
I wrote about my son in an answer above this one. Detach with love is what I've done, but am also continuing to learn how to do. I'm looking at resources to read/watch so I can learn this skill more completely. You are exactly right when you mention that I need to do this.
Does using humor help you?
You say you are artistic, when you cannot do your own art, view what others are doing in the world. On the news, on facebook, youtube, or distract yourself with t.v. P.B.S.(public television). They even have artist's communities where one can dream about retiring and living near artistic types, someday.
You nailed it! I view art every which way I can when I can't be doing it myself. I have my favorites stored on some sites and in my computer. My only TV watching is Better Homes and Gardens home improvement shows which husband records for me and often watches, too. I didn't mention that he usually wants me around when he's watching TV or plenty of other things. I pick my times that I want to be around him, which is far less. Especially when he's behaved badly...I don't stay around him at all.
You're right about communities I study for vacations and art and possibly moving to. You're pretty good st this! ;o)
It was as unfair to my sweet, gentle, smart husband to lose important parts of himself as it was to me to have my life change so abruptly and drastically to take care of him. I understand that you are doing this out of love for who he really is when the dementia isn't in charge, and out of an oath you took. Caregiving a spouse really has some factors that don't apply to caregiving a parent.
Almost everyone in my caregiving group had to eventually place their loved one in a professional care setting. That is the typical course of the disease. If/when your time comes, accept it graciously WITHOUT guilt.
I like the way you place your anger: at the appropriate things. I see I need to redirect my anger from my husband to the disease! How insightful! I have less anger about the unfairness of life, though mine has been really tough. I suppose I feel it on occasion, but mostly I accept that life isn't easy and never will be. That attitude could change, maybe, in the future. I think having a great childhood with loving parents and family still living, plus a close relationship with God has helped me accept a lot of negative things in life.
You are so right about how there are differences caregiving to a spouse vs. a parent. What I've done for my parents feels quite different than my dealings with my hubby. But they aren't Dr. Jekyll/ Mr. Hyde types, either.
My husband's cancer is expected to return, has never been healed in anyone that I can find in my research, so I suppose he will eventually die from his cancer before I'd have to place him in a home. He's still in an early stage of dementia after 6.5 yrs., so I expect the dementia could last a long time. If I did have to place him in a home, I suspect I will have done all that I could to keep him home and placement would be something I was ready for and hopefully, fairly guilt free. I CAN see me wondering how often and how long to visit him and still be relatively guilt-free. That could depend on how aware he is of who I am. I don't dwell on these things much and will deal with them as they happen.
Thank you for your very helpful thoughts!
There might be smaller decisions you let him try to make to let him be happy. There might be things where you try to make him feel included. But the reality is that you'll be taking over more and more. He won't like it. He'll be angry with you. You're going to have to find a way to internally just be at peace with that.
The bottom line is that this isn't going to get better. The only thing you can do is change the way you see it so that you're not eaten-up by it. That's a hard thing to do, by the way, and I'm not trying to trivialize it, but it's just what you'll have to work on learning to do.
As far as the mealtimes go, there are specially designed silverware for use with Parkinson's patients. It is curved and weighted. Please do a search for it, it will make your life a little easier. Also, go for finger foods. Hot dogs, chicken fingers, sandwiches, pizza bagels, pizza bites, French fries, that sort of thing.
The bed, you can buy a box spring that is about 1/2 the depth of a regular one. Also you don't want to use the really deep mattresses because you might want to use an egg crate topper to help prevent the bedsores. Having the bed lower will make it easier for him to get in and out of the bed without having to "climb" into it. Use either disposable or washable pads underneath his buttocks at night or anytime he's in bed, on top of the sheet. That way maybe you won't be changing the bedding every day. Also I've heard of people putting an extra pad inside of the Depends. Make sure you are using the male version of Depends so that the padding is in the right place.
I know it is very difficult to hear someone you love say mean, nasty things to you, but remember he is controlled by his defective brain these days. Try to just let it roll off your back. You know what you do for him. What he means is that you aren't FIXING his problems. Making them go away. Well, you know that can't be done. If you can find a support group nearby, I would advise you to attend one. Sometimes they have sitters there.
Continue to read and post here as you have time. We can support each other. Bless you.
Don't let it bother you that you hadn't read my story before your last answer. I'm new and this was my first discussion question. So I'm partly responsible, too.
I'll keep in mind your idea about some miniature kitchen appliances. Right now, I can get by without them though I do sometimes store necessities in my room. Thanks also for the reminder about weapons. I will have to remove all keys to weapons and safes from his possession as soon as he gets less in touch with reality. Unfortunately, he's spent about 8.5 yrs. in the earliest stage and is all too aware if he doesn't have his wallet or keys, etc. He acts so normal most of the time it's a shock when he turns nasty and negative. He's not physically aggressive, he's verbally and emotionally nasty. He likes to play mind games but I don't think he sees them as games, just his normal way to get what he wants.
I like that you point out faith as a coping mechanism. I'm very religious and look first to God and his commands for all direction and action. His love keeps me constantly aware of him, and knowing I have God's support and strength is truly a gift. Maybe I can make myself journal with my laptop, but I have so many things I "have" to do vs. those I "want" to do, it may not work. You taught me something totally new...that a person can be put in 24/7 care for a short period of time if the situation calls for it. I'll remember that.
You're right, my son is good company. I hardly see him, however, because he's home due to poor health. He's in his room most of the day. He's missed the last yr. of college and we hope he will have finished treatment in time to return to University by fall.
Thank you for your ideas and thoughts.
I do understand that my husband will mostly get worse rather than better. He's actually better in the last year than the 6-7 yrs. before. He has less Dr. Jekyll/Mr. Hyde personality switches. Less negativity. But I know his brain is dying bit by bit and I will be making more decisions as time passes. I have already taken over a lot of decision-making. That's not a problem for me, and he often wants me to make the decisions. I have to hold back and let him feel in control by letting him make some decisions. He has a need to be in control (except for what he forgets exists) and to always be right. It's not pretty if he thinks I am taking over decisions that should be his. I am ready to take over now, but my hubby needs to feel he's still the head of household. So I wait for now.
I like your daughter's advice to "not take it personally". That's exactly what I'm trying to learn through many routes, including the advice of other people here. I realize I'm sometimes taken off-guard by my hubby's normal behavior for a day or two and then a sudden verbal attack. I have to be on guard at all times.
I believe my question and profile story are completely about focusing on my changing relationship with my husband. So, yes, I am already focused on that.
I'm sorry that your husband treated you so badly for so long. I don't know how you got through it before you or your psychiatrist came up with your coping ideas. I'm going to consider all of them carefully. Your last one sounds very helpful---you vent your anger immediately! Good one!!
I sincerely hope you don't find yourself without the funds to take good care of yourself. One good thought is that not everyone dies in a nursing home. Many die of causes that don't mean they must live in a nursing home or similar. For instance: some people die in bed during the night. To me, that's brief and far better than years of illness and dependence in a nursing facility.