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My Attitude is Getting Worse

My wife and I will have been married 62 years in March. Throughout our marriage, we've had our up's and down's - so much so that we're now to the point of having lost the spark that generated the fire so many years ago. Her mother had Alzheimer's and the fear of the disease has prompted my wife to ask me several times if I'll stand by her when the disease comes calling again. And, of course the answer has always been yes. At this stage of the disease - Early-to-Mid - it's been progressing more rapidly. About 2 years ago, she was firmly in the denial phase and no one but myself knew - not our children or her physicians. Over time, I have learned to anticipate and respond to the Alzheimer's "talk" of repetitive questions, forgetfulness and off-the-wall comments like - "Is the number "0" capitalized?" I'm now doing 95% of the household and outdoor work as well as the shopping and grocery purchases, stocking shelves and refrigerators / freezers as well as preparing all meals for us and one of our sons who is currently living with us while he gets back on his feet. Tiredness creeps in and covers me with a fatigue that makes me think that bedtime will never come soon enough again.

As a result of the accumulation of all these factors - including the disease itself - I lash out in anger shouting to the top of my lungs which ends up doing nothing but making matters worse and leaves me frustrated to just wanting to quit. From her perspective - she doesn't add all these factors together and relate it to my being unable to handle only so much pressure - but is a pure lack of love and respect for her that has deteriorated to the point of prolonged periods of time every day of not speaking to one another and burying our heads in books and internet trying to salvage what little peace we can find until the next time I blow up. Tonight - she told me we needed to split up because of my yelling. This isn't the first time she's mentioned this as a option to distance herself form the "pain" I'm causing her. I should know by now that what she does -disease or not - brings on the anger after a period of build up. Tomorrow I plan to make an appointment with a Psychologist to see if they can help me. If anyone has any other suggestions I'd appreciate a comment regarding how you may have handled this type situation. Am I the only one who can't control their level / tone of speech when things build up? I feel like I'm blaming her for the situation we're in but it's not her fault - it's no ones fault - it's what life dealt us and I'm having a difficult time handling it. Thanks -
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Comments

  • H1235
    H1235 Member Posts: 1,804
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    Welcome. You have been given great advice. It took me a long time to accept that I needed anxiety medication. Counseling is also a good idea. It might be helpful to try and change your prospective and see her as someone who is not well that you care for vs a partner and wife. I’m not sure how you do that. Do you have a plan B? Have you considered Al? Her own Al apartment, activities, new friends and a reason to get dressed in the morning might not be such a bad thing for either of you. When you said you would stand by her, in my opinion that means you would do what is best for her and see that she has the care she needs. Al doesn’t mean you drop her off and you’re done.There is still a lot of work that goes into caring for someone in Al. I’m glad you found this group.

  • DonCaregiver
    DonCaregiver Member Posts: 18
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    Thank you - I guess the adage is true - "Silence is golden" - and the result takes it's form in many ways - for many reasons.

  • Chance Rider
    Chance Rider Member Posts: 279
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    @DonCaregiver you definitely are not alone in finding it difficult to control how you respond to your wife. My husband has anosogosia and is unable to recognize his mental and physical decline.

    I have a tough time remembering to walk away rather than respond with frustration or anger. I’ve decided I need a visual reminder and am considering buying this to remind myself to “turn around and walk away” rather than engage with him. I also recently had my doctor prescribe a med to help me.

    IMG_5567.jpeg

    This is a caring, supportive and judgement free community. Don’t hesitate to vent here. Your post helped me realize I’m not alone.

  • trottingalong
    trottingalong Member Posts: 975
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    I had to “rethink” what was happening to my husband and make changes to make me feel better. It wasn’t easy. Small steps. I like the idea of looking at yourself as your wife’s caregiver vs. lifelong partner. It helps. It is like having a toddler at times. Anger makes you feel worse and solves no problems. You have the added component of your son. The counseling is a wonderful idea. Just know that you are not alone. The majority of us have been through similar situations with our emotions and some are still dealing with it. Walks help me even if it’s only for 5 minutes. I take deep breaths and remind myself that my husband isn’t doing this on purpose. His brain is broken.

  • Tony484
    Tony484 Member Posts: 32
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    This is something of a rambling aside to the commenting above that is right on. Try to find a counselor/psychologist/social worker who is experienced with dementia and the inevitable, gradual, awful, horrible decline. If one doesn't help, look for another, especially if they list things like grief, dementia, Alziheimer's, etc in their list of interests or specialty areas. Do what you can to find a support group, online or otherwise. In person is better. And keep looking and commenting here, which was my main source of support and especially knowledge for 8 years. Especially for knowledge about the specifics of situations like yours. Get advice, both personal and financial on AL and Memory Care so you know what you might eventually need to get into. Maybe look into palliative medical care in a system that also has hospice. Those people kicked my butt to make changes when I was in over my head and didn't know it, and they pulled strings to find an appropriate placement when the time inevitably came. My DW died slightly over a year ago, at a time when I was at the end of my rope and I really thought that my caregiving role, which sounds very similar to yours, would go on forever. Now that I am looking back, I know two things. First, have to take it a day at a time. That is the big one. Get through the day. Do what you have to. Just survive. Staying alive and healthy is your objective. Work on the issues as they come up, like the yelling issue. Get help to work to fix it, but know that other similarly stressful issues will come up. Love your wife as she goes through the increasingly worse phases of not being who she was. It becomes a very different kind of love—- more parent to child than spouse to spouse. As you've pointed out, that can be horrific. It is. Hard as f&ck.

    Don't be hard on yourself. Get in home relief as you can, though this will not be the panacea you want it to be. You've obviously got to deal with the yelling and you know it and are working to do something about it and that is the best you can do. Maybe go yell in private. You know it's not her fault, not serving any useful purpose, and you'll learn to change your ways if you keep trying via things like your post, finding a counselor, etc. etc. You are doing the hardest job in the world and I feel for you, as others felt for me. Very likely, after putting in your time, it will all end when you least expect. I thought my wife would live several more years beyond what she did. Then you'll probably be in shock and grieving hard for some period of time but that will somehow soften. I have no idea how things have very, very gradually become mostly "normal" for me again, but they have. I still have a ways to go but a good world will still be out there for you and me. Dealing with your own emotions at this point, as you are really trying to do, especially if you can understand what they are and finding ways to try to deal with them could help you a lot in the long run. Because even when you aren't entirely successful, you will know that you did the best you could, and that turns out to be enough to help eliminate the regret you might otherwise feel. If you end up looking back and thinking that it was a long hard road, that you had a lot to learn, that you made many mistakes, big and little, but you did your best to learn more and to do better the next time, one day at a time, you'll be able to look back with few or no regrets. And that was the second really big thing for me. I really screwed up many times, was an a-hole, but just kept trying to learn and to do my best. And knowing that makes me feel good now. Good luck. I'm very sorry that you are in this big club.

  • DonCaregiver
    DonCaregiver Member Posts: 18
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    I'm grateful for your remarks. Everyone who has responded has reenforced the message that it's not just me who's had a difficult time with feelings that I wondered if were exclusive to me and the fact I couldn't control my temper when I needed to the most.

  • DonCaregiver
    DonCaregiver Member Posts: 18
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    "Small steps" - what a great thought - to approach teaching my mind to control the anger and hopefully rid myself of these negative feelings - giving us both a shot at a smother transition as we move forward together. Don't expect miracles in a day - they will come. Looking at myself as a caregiver comes naturally after years of working in the hospital as an RN - as did my wife.

  • DonCaregiver
    DonCaregiver Member Posts: 18
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    I've never thought of a plan "B". Both of us being retired RN's didn't allow for cash and investments to grow in a retirement account because there were no contributions to be had. Most hospitals do not contribute to retirement accounts and in the days of minimal salaries in the field of nursing - well - let's just say - "pickin's are slim." I'm thankful I found this group too! Thanks for your insight.

  • DonCaregiver
    DonCaregiver Member Posts: 18
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    Thanks - I'll make good use of both I'm sure!

  • White Crane
    White Crane Member Posts: 1,166
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    Dear Don, I can relate. My DH has been in MC for almost two years but I remember those days when he was home and I felt like I would explode from the stress and sometimes ended up yelling at him or going outside and silently screaming. Afterward, I always felt guilty and hoped I wouldn't do it again. Anxiety meds helped some as did an antidepressant. It's not an easy road. I called The Area Agency on Aging and they were able to give me quite a few hours of respite care. It took awhile to find a caregiver who was a good fit but when we did, it was very helpful. It allowed me to get out of the house or go to another part of the house and not have to deal with the stress.

    Does your son realize how much stress you are under? Have you had an honest talk with him and told him you cannot handle the stress of caregiving and also try to solve his problems? Just a thought.

    I hope you can find the help you need.

  • DonCaregiver
    DonCaregiver Member Posts: 18
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    Wow - what a thoughtful and thorough dialogue of personal experiences and self-help. A lot of great information in your post and the fact that you - as others have - found ways to recover your own spirit that had been beaten down over time - so that when the time came you could state you had done your best. That's where I want to be - at that same point. My wife deserves more from me than what've been giving her and after 62 years - and while she can - she should not be afraid to ask for or expect anything less.

  • DonCaregiver
    DonCaregiver Member Posts: 18
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    I think self-defense is an automatic reaction to an unfounded accusation. Do you think that may have been the disease talking rather than her actual belief? Hurt feelings remain for those accused. I'm sorry for your pain that lingers today.

  • DonCaregiver
    DonCaregiver Member Posts: 18
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    You bring up some excellent points. I should say you are absolutely correct when you wrote your first sentence. I've also felt guilt and hoped I wouldn't act out that way again - but then it did - over and over again. I will certainly check into the Agency for Aging and the medications you suggested.

    My son doesn't understand the disease process of Alzheimer's and therefore adds to the stress on both myself and my wife. I don't believe it's intentionally done and he's generally kind and thoughtful for the most part. The reason he's here is because he's accumulated a large debt over several years - is not married - has no children and moved in with us about a year ago. The purpose of the move was to find a well paying job to pay off his bills and find an apartment once he was out of debt. He's just about at that point now. So, you're right - a talk is appropriate at this point to start the transition of moving out - and educating him on the disease process of Alzheimer's. I doubt my son knows the level of stress both my wife and I are under. The conversation will happen soon. Thanks for your thoughts.

  • H1235
    H1235 Member Posts: 1,804
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    I have attached some information on Medicaid. It can be complicated and qualification requirements and coverage depends on the state. A lawyer is really the best way to go, but they are so expensive. Doing some research before a visit may speed things up (if you’re paying by the hour) and will allow you time to focus on questions vs trying to get a grasp on some of the basics.


    https://www.medicaidplanningassistance.org/medicaid-eligibility-income-chart/

  • DonCaregiver
    DonCaregiver Member Posts: 18
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    Thank you so much for your thoughts and helpful information. It's very appreciated and heart warming that that while you and I share the Alzheimer road - some of us are at the end of the journey and others like myself are at the beginning of the journey. And thank you to all the rest of the respondents here

  • DonCaregiver
    DonCaregiver Member Posts: 18
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    Thank you for including the medicare link and suggestions. Very much appreciated!

  • SDianeL
    SDianeL Member Posts: 3,254
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    we understand. If you haven’t done so already, read the book “The 36 Hour Day” which helped me after my husband’s diagnosis. Also search online for dementia caregiving videos by Tam Cummings or Teepa Snow. The more you learn the better you can help her. 2 things I learned here: 1) you can’t reason with someone whose reasoner is broken. I repeated that throughout the day. And 2) never argue with someone with dementia. Get in their world. Your relationship with your wife has changed. You are no longer equal partners or spouses. She is your patient and you her nurse. Realizing that took the anger and emotion out of it for me. Another thing I did was get up early and stay up after he went to sleep and do the bills and have my quiet time. That way I could focus on him 100% during the day. This disease robs us of so much. Give yourself grace. You’re human. That you keep trying to be a better caregiver is the important thing. Or realizing that not everyone is cut out to be a caregiver and making other arrangements might be necessary. 💜

  • Maru
    Maru Member Posts: 353
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    First thing first. You have an adult son living with you until he gets back on his feet. Assuming that he is not a drug addict, why isn't he helping with all the things that you have to do? Running errands, doing some meal preps, spending time with his mother so that you can do something for yourself?

    You are overwhelmed and need help, you need a break, you need a safe place where you can vent to your heart's content.Glad that you are seeking help.

    Can't help you to re-generate the spark you had in the early days, but there may be ways that you can change your attitude which might help. For me, it was a spiritual shift in thinking. Hopefully, your therapist can help you here. I hope that you find a way through this.

  • H1235
    H1235 Member Posts: 1,804
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    I find mom has a way of sucking me into an argument. She demands answers and explanations. Why won’t you let me do this or that? If I try to explain (using facts and logic), well we all know how that goes. She tells me I’m being ridiculous. The doctors don’t know what they are talking about. Im not telling the truth. If I try to distract her she calls me out for changing the subject and gets mad. If I walk away she claims I’m the unreasonable one, because I refuse to talk about her concerns. She claims I won’t even talk with her about … to anyone who will listen. I end up looking like a horrible person to anyone who doesn’t have all the details of the situation. If I can manage to come up with some kind of fib on the fly, she often sees through it. It is a no win situation. Thankfully medication has helped.

  • DonCaregiver
    DonCaregiver Member Posts: 18
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    Thank you for your heartfelt remarks. The timing is off for him being able to help me with the meals because he goes to work around 1-2p and gets back home around 11-12aI was cooking for all three of us but with his change of hours have scaled it back to just my wife and I with the exception of the weekend meals and many times not even then if he decides to work overtime. When he's here with us for the weekend - I limit the menu to foods that don't require much prep such as pre-formed hamburgers, hot dogs, pre-cooked BBQ, pizza, marinated pork lion that I I bake with veg.s and canned soups and sandwiches. A great many of the meals are of the prepared and frozen such as Birds-eye vegetables that are already seasoned for a variety and then mix in frozen meats that are already marinated. My son is not a drug addict - thank God!! Beyond grocery shopping - there are very few errands that I need to run - and while that would help if I did - my wife is not anywhere near the point of incapacitation or requiring around the clock so I'm fine on that situation. On the other hand, the suggestions you've mentioned here are good, appreciated and give me ideas for situations that I'm sure will arise in the future.

  • SDianeL
    SDianeL Member Posts: 3,254
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    in time as the disease progresses you will come to accept it more. Don’t know if that’s better or worse. 💜

Commonly Used Abbreviations


DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
Read more