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My husband is starting to get dementia and also has mult lymphoma. He has to have 4 remaining top teeth pulled. He had 39 radiation treatments for prostate cancer a year an a half ago. He was a very independent man and if he wanted something done it had to be done right then not 5 min. later. I know things will not get any better and my big problem is how do I get over feeling guilty when I get so mad at him and don't care what he does?

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First of all Mama12, I am so sorry to learn of your husband's decline and how his illnesses have taken a toll on you. The feelings of frustration and even anger followed by guilt are normal considering your trying circumstances. After all you are human! The trick in this situation is learning not to act on those feelings of anger by taking it out on your husband. Finding a support group or a counselor who specializes in caregiver support may be helpful. At the very least having a confidant, family member, trusted friend or clergy with who you can confide is a proven way to cope with caregiver guilt. best wishes, Kathy
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First, you are human, not God. ANYONE will get tired and frustrated and want to flee in situations like this. Secondly, you must find an outlet. Vent to someone, set up a punching bag, hammer and nails in an out of the way place, secure someone to stay with him so you can walk around the block, ANYTHING to gain a release that is safe and acceptable for you! Unfortunately, things can get worse before they get better and living with the guilt of Geez, I wish I had done this or that or ..... Is really tough. I lost a husband and father to cancer, grandmother to stroke, and now my mom is in latter stages of dementia. I feel your situation and anxiety and hope you find a way to cope and, at the end of the day, have peace about your responses.
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I believe your feelings are natural. I felt this way with mom and still do at sometimes. I have come to accept that this is what it is and its my job to do what is best to help my mom make the transition. As to what you can do to get over your feelings? You've done it already right here, communicate your feelings with others. God Bless You!!!
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Mama12 - I have the same exact thing with my husband, although he did not have prostate cancer, he has declining Parkinsons disease and lymphoma (which right now is dormant), and also he has Parkinsons dementia. He is the same way, very independant, wants to do everything himself, will not admit that he cannot do what he used to, and he continually falls and hurts himself, and tries to cut the grass, trim trees, use an axe to get rid of tree stumps. This man can't take two steps on his own without falling down, he has no balance control, and I get so frustrated and mad with him, because he just keeps doing things "he knows" are going to get him into trouble. His brain says he can do it, but his body won't let him. I used to yell at him because he would just keep getting in trouble. Working with my therapist, she has taught me that he really cannot help his actions, (especially because he won't admit there is anything wrong) and that I really need to be as patient as possible. So if he falls, but doesn't hurt himself, I just pick him up ask him if he is okay, and just go about what I was doing. I feel much better since I've stopped letting it bother me so much, it's hard at first, but I've finally accomplished it. When he spills something or falls, or breaks something when he falls, as long as he isn't hurt, I try to remain as calm as I can. Sometimes I have to scream when I get into the shower, but I feel better. So just know you are not alone. You are normal, when you are a sole caregiver as you are, and its your spouse, it's very difficult. I will pray for you that you can get some help in helping yourself to remain calm.
You take care of yourself too, we have a terrible tendancy to not, and we cannot afford to get down. I'm JAD711 if you need to talk. God Bless you!
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Dear Mama12,
As everyone said above = YOU ARE HUMAN. You are not super human. No one is super human nor perfect caregivers in our situations. There is no such thing. Your feelings are NORMAL. I too had big trouble with Daddy because he wouldn't ring the bell when he needed help even with the walker going to the bathroom. His brain was sharp, but the body has broken down, so he actually believed he could do all that he thought he could do. He fell 7x in 10 days and still, he wouldn't call for help. So I practically lived in the ER hospital for many days and nights. Losing their independence with the elderly is a strong emotion. I think I would be that way too. Getting mad at your husband is also a very normal feeling--who wouldn't get mad? After all, he is falling down because of his own actions [like my Daddy] and I/and you, just can't seem to get it into their hard heads that they can no longer do it themselves. Besides the sadness and pain I felt when Daddy kept falling, I too became angry at him because it could of been prevented. JAD711 said a very intelligent advice, when he falls, just pick him up and go about your business and not let it bother her so much if he hasn't hurt himself. It won't be easy at first, just as she said, but you will be training yourself for future events, etc.. God Bless you.
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In my situation it is my mother who makes me furious. I had another meltdown last night when, for the third time this month, she claimed that someone had sneaked into her house and stole her silverware. Once again, I showed her the silverware. She then said, "That's not the silverware. It's the other silverware." That's her constant pattern: bats##t crazy stories and then lies and more lies to cover up when her b.s. is called out. I am livid. I am trapped. I am in perpetual prison. This crazy old bat has ruined my life. I utterly hate her--loathe her--at this point and it's getting worse.
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Lori1943, it might help your stress level to realize that your mother is not lying and she is not making up bs. The connections in her brain are scrambled and she is telling the truth as she sees it. The theft delusion is extremely common in dementia. It is not something she is making up to annoy you. And you cannot reason, explain, or argue her out of her beliefs. Showing her the silverware, as you found out, does not change her mind. She can't help that. Really.

Mama12, others have given you great advice. I'd like to share with all of you dealing with dementia a book I've found very helpful. "Loving Someone Who Has Dementia" by Pauline Boss deals with caregiver feelings.
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Dear Lori1943,
My Mom used to say that I moved her things and people stole her clothes on the close line. She couldn't find stuff and told me that I took them or hid them. At first I got irritated and tried to explain that it was she who lost them or hid them or whatevers, but that wouldn't work and did not help her or me at all. Trying to convince them is a useless endeavor and will make you crazy to the point of physical and emotional illness. But as time moved on I've come to realize that there is no way to explain the truth of what really happened because in their minds it is truth no matter what you say. I've learned to just AGREE to anything that she says and walk away. There is no point in showing her the silverware--it will never be the silverware she is talking about anyway and it will send you thru the roof with irritation and anger when she keeps on arguing with you. The point is, do not argue with a person with dementia---just appease and distract. Just say, "Ok I'll look into it" or just plain "OK" is good enough. Anything that doesn't require her to keep on complaining and arguing. She cannot argue or complain with anyone who doesn't argue back or open their mouth. Let her argue and complain to the walls. Just walk.......and let her keep talking.....but just walk....
Let her talk about her crazy stories all by herself, do not give her an audience. Try not to let her crazy talk drive you insane. I know this is difficult but I've found that by not responding to any crazy outburst is the surefire way to stop whats coming out of her mouth. And even if they still come out of her mouth, you've already walked away into another room and not listening. I hope this helps. You are not in prison. Your life is not ruined. You are allowing your Mom to put you in prison and allowing her to ruin your life. Ask God to give you a different perspective on your life. Ask with humility and truth and He will help and answer you.
Can you get CG help to get out of the house and away from Mom for hours each day/or adult day care?
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Lori1943, Early in her dementia my MIL began claiming "money was missing", several cell phones were "stolen", that her children didn't care about her, and would tell lies that seemed just crazy (looking back). Her behaviors and lies got more and more extreme. Problem was that she had always been a huge liar, was never a bright girl, and set records for her hatred of inlaws. (She was an equal opportunity hater, she hated all of her children's spouses, I was just the first) You can imagine that when the dementia first showed up, no one could tell it from her usual behavior!

The nursing home staff at my FIL's facility called family members and told us that they believed after observing her day in and day out visiting him, that she was suffering from dementia. We all assured them that what they were seeing was just her being her normal self. Everyone lived over 12 hours away, on the phone she was showtiming and being her usual self.

After some sort of vascular dementia stroke last December, her dementia became extremely apparent.

At this point she had made so many relatives so very angry over the past couple of years we had trouble getting them to calm down enough to understand that the dementia went several years back. In going through her checkbook we finally determined that her initial struggle with dementia started over 3 years ago.

By some odd turn of events, the December stroke turned her personality. She became a sweet caring, loving individual who obviously suffers from dementia. For some family members her new personality makes them miss their mom, nasty as she could be, they miss the old, hateful, errrr, lady. They feel they have lost their mom already. The sad part is that while they feel the person there isn't really their mom (one hasn't been able to bring himself to talk to her on the phone since their dad died in June) this new sweet person believes she is their mom.

Since its not my mom, its easier for me to deal with the dementia. The humor route amuses me and is kind to her. I try to humor everything she says when I visit her or take her to her appointments. Redirecting her right after agreeing does work with her - there is no being rational with dementia. I do try to amuse myself with my responses, but not at her expense.

When my FIL was alive, he suffered from dementia from his numerous surgeries. Neither of them understood -all the time- that the other had dementia. With both of them bouncing in and out of lucidity I had to think fast and creatively. You have got to get some sort of break and find a way to cope.

lefaucon and Jeanne are right, find what will keep you sane. When my MIL tells me that one of her children visited yesterday and slept on the floor overnight and joined her for dinner, I tell her that she has wonderful children and she beams. When she believes things are missing, I ask her to describe them in detail and transition the subject, but boy when the dementia is stuck in a groove - IT IS STUCK IN A GROOVE. (And I do mean to yell that last part, frustration must surface in a healthy manner occasionally)
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Lori, I feel ya girl for I feel similar ways with my mnl n like lefaucon mention, "There is no point in showing her the silverware--it will never be the silverware she is talking about anyway and it will send you thru the roof with irritation and anger when she keeps on arguing with you." I know, it sounds easier said than done. Yet, she makes a lot of sense. Like my mnl n the freaking toilet paper everywhere. I guess that is why it does help a lot if u r able to get away for a few hrs from the situation n just breath. However, u will need to see if someone can stay while u r gone or try out respite care place. I use a church n found it through Agent Agency on Aging n the Alzheimer's Association has helped me with the paying part for respite break. We still argue but not like we use to anymore. For she was bucking up in my face so, we have come a far way.
jeannegibbs, thanks a lot for book suggestion for I need to read it myself. That is why it is great to come to this site for other people have already been through it n can see better than what we r seeing n offer advice. The least we can do is take the offer n learn from it to become a better person as a caregiver. However, I cannot promise I will not explode n some days yet, I can promise not to take it out on my mnl because it is her illness talking n not her sometimes. It still easier said than done but I am going searching for that book. thanks.
Everyone here has giving great advice n thank you as well. Lori, hand in their n vent away n get some respite break if u can. My 4 little hrs a wk makes a difference for me. If I could get her out for twice a wk it would be amazing but I know I would be pushing her. Four hrs is better than none. ; )
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I do the same thing with my husband. I get pushed to not caring after so much frustration with him. Its hard. Today he cried like a baby at the doctor and that got me crying too!!! Its all so overwhelming and sad.
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Lori and others I know how you feel. This site helps to see tha tothers are inthe same boat and that we all are facing a difficult time in our lives and in the lives of our parents/spouses/loved ones.
my 92 year old mother moved in with me 3 years ago...then after a short hospital stay one month ago she remembers none of the past 3 years. she is confused about begin in a nursing home and asks when she can leave. i know she is worried about where she 'will go when she leave' becuase she has finally realized that she sold her home even though she has no memory of living with me. what I dont know is what is the 'truth.' when i come she is weepy and anxiety-ridden....'i thought you weren't coming' she will cry, and 'i'm not having a very good day' she cries. she says she hates the 'exercise' which is the PT and the OT which is supposed to make her better. she says she is lonely and bored and 'tiered of this place.' But i ask the nurses and they say she is pretty friendly and involved when i am not there. She wants to leave and 'stay with me' but i am terrified to bring her back to my house. I still owrk and I know that i cant leave her alone and a sitter would be necessary but would turn life upside down....I dont know if i should leave her there, even though she will blame me (yesterday she told me i was making all the decisions for her and she DID NOT LIKE IT). and if i do bring her home i am afraid that it will take another crisis to get her to go to another AL or NH. we have always had a difficult relationship and I feel like she will suck the life out of me if it is the last thing she ever does. I wish i could be honest with myself, as Lori is and others, who admit that they dont know if the love their parent anymore, or even like them. when she was in the hospital i did cry and worry about her health and i didnt want her to be afraid or lonely but now things are back to the 'old way' of guilt and anger and I wnder about my feelings.
I wish there was a way for all of us to find some peace and comfort in these tough tough decisions......i am an only child and sometimes, from what i read here, that can be a blessing. i worry about her and me and the future and money and how long this will go on, and getting through the day and will i ever have a life, and then i know that her life is just as important in the grand scope of things as mine so then i feel even more guilty in wanting her to die or be out of her mind so that i can let go of this for a while.
bless all of you/us who are dealing with these issues.
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We are going through this with my dad. We need to remember that those with alzheimer's are going through their own private hell. It would probably be easier if their illness was visible, but it isn't. If our "person" lost both hands, would we get angry if he/she couldn't pick things up off the floor? It's the same with dementia. We can't see the disability but it's still there. It doesn't always help with our frustration, but we have to remember that trying to force them to make sense will only serve to frustrate us more and make the situation worse. When your "person" starts talking about things going missing or delusions that we know aren't real, try talking very calmly and gently and let him/her listen to your feelings. It will calm things down. It doesn't always work, but it's a start.
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Thank GOD, for all you good folks that get on here and acknowledge and listen to us. Reading the above is exactly what I am going through with my husband. Some days are better than others. I lose my patience, but pray daily for more patience and have also learned not to argue. I walk the dog (a lot!) and it helps to be in the fresh air and nature. Still, reading the above my emotions rise and I want to cry. I beat those feelings down as much as I can. Just keep on keeping on. Thank you again, everyone, for your support and sharing and caring. God Bless. And pray he helps us all.
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Dear Mama12,
Last time I wrote was last year when Dad was still alive. Dad has passed and Mom passed 5 months after. Mom had AD and it was very hard for me. But I have learned more things about myself, life, God and practically everything through the pain that I suffered caring for both of them and after Dad being in two care homes and Mom ended up in hospice.
The most important thing that I learned after their deaths was that life while caring for them is NOT about me. My suffering was NOT the important thing. My feelings of anger, frustration, etc....was NOT about me. I have learned that taking care of one's parents in their last days, weeks, or years are the MOST important thing that I could ever have done. Being with them and making them happy, comfortable, and loved is THE MOST IMPORTANT THING you could ever do.
When I was 6 months old I had colic. I screamed and yelled from the pain but Mom refused to give me the pain meds the doc prescribed cause she said all it did was make me sleep. So, she carried me while she vacuumed the house, while she cooked, while she did everything when I was screaming in pain. Now, I ask you and everybody else, if Mom can do that for me, why can I not suffer for her and take all the pain that he/she is going through when death is at their deaths door or taking care of them at home or in a NH or hospice?? Me? I couldn't carry even a crying baby let alone one screaming in my ear for one second. During the rough times I gave them while growing up, they did not kick me out, get rid of me, put me into a mental institution, or give me away. They could of. And in my mind should of, but they didn't.
I made many mistakes caring for them and at the time I did not know that cause I was selfish and self-centered and if anything interrupted MY life, it was no good. I tried to be the perfect caregiver and sis and bro could never have done what I did, but I was not perfect. I'm not saying at all that any one of you was like that, but I was.
Well, now I live with constant guilt and regret and sadness and I miss them so much I feel like I'm losing my mind. Should of's, could of's, would of's all come with the territory, but it will be increased greatly if we put ourselves first, if we put our comfort first, if we put our feelings first, if we put our lives before our parents first. Only when they pass will you understand this.
Only the Lord has helped me deal with me. Only He has helped me through this. Otherwise I would of committed suicide by now.
Love your Dad, Love your Mom NOW. You will not have a second chance.
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