I'm a little early for a change. I have posted Monday's Blog on Sunday night. It concerns resentment. I invite you to go to the home page - www.thealzheimerspouse.com - read the Blog, and comment here. Thank you.
I'm going to bite the bullet and spend the money on myself and go into therapy. I'm calling the people my family doctor sent me to on Monday and I'm making an appointment. One of the main reasons is resentment. Also the usual mix of guilt, sadness, lonliness, isolation and grief.
I did go to a therapist for about 6mos when DH was first diagnosed. I didnt think i could manage my life plus the burden of the AD miseries. I found talking about it to a professional quite helpful as the sessions were about ME and what would be in my best interests for once. it got me thru the hard times ahead and past the guilt conflicts, andresentment of having to meet his every demand due to his illness. it almost felt as if i were in bondage with no say at all except to agree to everything said to avoid conflict. I was fortunate to have had 14yrs of my own psychotherapy when i was younger so i think it helped to be able to walk away before things escalated. today i look back and see how terribly difficult it all was and now i guess i have blocked out those times. those yrs were undeniably the hardest part of this journey so far. divvi
Resentment you bet in capital letters. My husband's dementia affects the part of his brain that allows insight, anosognosia is the techie term. They cannot understand that they have the problem. They know something is wrong however since they can't see the problem within themselves it must be someone else with the problem; it is me, he thinks I have the ALZ, he can't see it in himself. No amount of talking, test results, Dr. consults, social worker sessions, etc. he can't see all that is going on with him. Frustration and resentment abound in this household. I want to scream, cry, runaway, just make it stop. I see a therapist on a fairly regular basis, that keeps me sane for now. However my husband is in the early stages around stage 4 I think who can tell the moods, problems and changes are so fluid. What lies ahead?? His children really don't care to step in as he has them convinced he is fine. Resentment. Yes, I have lost my husband, lover, friend and support. I have no one to share conversation with, share problems with, share a joke with. Who can cuddle with a stranger?? I don't know the man I share a bed with. Oh yeah RESENTMENT. How dare this disease take our loved one away and leave the body of a stranger. A stranger, that we are to care for, not get angry with and try to help down the long journey of dementia. How can anyone ask, expect us to do this, and not have resentment. I took my late husband down the journey of lung cancer. It was painful. However, he knew he had the disease. He knew the disease would cause his death. He knew I didn't cause the disease. This ALZ disease is just cruel beyond words. Lots of resentment Joan, thank you so much for helping me along in this incredibly painful journey.
ASY, I so identify with your situation, your words. The anosognosia is the twilight zone of it all. I could have written it all. (Except substitute brother for children, he has none.)
You feel like running away, and all I can do each day is plan my escape. I am not as brave as all the others. I am not devoted as all the others. I cannot afford to take care of him & myself. I was devoted at a point in the past, but that seems so long ago. We had a screaming argument tonight about nothing, I don't know where it came from. He thought I was trying to start an argument, which I was not & he went off. I just left the room. Someday I will just leave the house. If I could afford it, I would be out of here now. I had looked forward to a happy retirement with the man I married, but whoops, one day I realized he wasn't the calm, patient, caring man I had married, wasn't the man I had married at all, and whoops, he had blown all of our retirement funds on the stock market, leaving me to fend for myself.
I stay here on this site to keep my sanity. I don't have the decades of a wonderful marriage to look back on. I just want off this roller coaster ride. I can't even seem to remember who I was when things were normal. I do remember being a happy person. I do realize this is making me more & more unhappy.
Resentment? I hope that's all I feel, but I sense it is more like anger. I don't want to become an angry bitter person. I am worn out from tippy toeing around not to get him upset. He misunderstands what I am saying to him. I am living with a stranger now & I don't like it one bit.
Joan, you opened a can of worms here, and I could go on & on, but I won't belabor the point. I just hope for the strength to get myself back on my feet to get me out of this. (I know I must be the black sheep of this family.) Sorry.
I resent everything this has done to him, me, and our marriage. It has ruined all our plans...only he doesn't realize it. He knows he's "bad off" but doesn't know the half of it. I hate having to play along in order to keep peace. And I know that does work because I've been trying it out when I can. If I just swallow my words and pretend that he's right and stay calm, it does bring him back to some kind of calm. But why do I have to do this? Why can't I say what's on my mind, tell him that he's not walking into the shower when he says he is, that there are no men in the house, that he can't do anything for himself, etc. The more I get into this phony acting, the more I'm losing myself. I agree with Val...I feel that I am forced into taking care of someone and becoming a person I don't even like. But he worked hard for retirement and his life has now had a limit put on it. If I don't help him enjoy at least what he can, who will? He deserves to have a little peace and happiness and I'm the only one who can do. So I will swallow my anger, resentment, sadness...whatever and hope that I can last through this. I only hope that there is enough left of me to once again enjoy life someday.
Val-there are no black sheep in this family, we did not choose this path it was handed to us. To deal with a disease is one thing, to deal with a disease that the person who has it doesn't know it and the destruction it causes is beyond comprehension and ability to deal with. Why are we left to deal with a situation, ie, disease that no one else will look at? My husband's neuro guy talks on and on about his memory problems. Okedokey, it is a little more serious than just forgetting things. The rages, the total personality change, the mood swings, on and on. If it was only he couldn't remember where he left his keys, passport, drivers license, etc that would be easy. I would love to walk out and not look back but the guilt keeps me here. I have known this man for over 20 yr however we have only been together for 13 yr we don't have the decades of marriage, but I certainly knew who I married. He is gone. I hate it, resent it rail against it, but it is true. Why can't I stop being angry? I go to therapy, I read about this disease, I run, etc. I am still resentful and angry.
I'll just join in here as well...I too feel resentment at times ~ It usually comes when I'm just plain TIRED of ALL the things that have to be taken care of, and then take care of a few more!! We are not just "ourselves", but we have to remember ALL things for TWO! How much has he had to drink, eat, did he have a bowel mvmt today, when did he have a shower last, does he need a shave, have his teeth been brushed & flossed, nose hairs clipped, nails clipped & filed, dressing, shoes (on the right feet!), into & out of the car, does he have a show to watch that he likes, is he wet, do I have enough of his pills, do I have enough of his incontenence supplies, and today, can I get a suppository of Prep H into his hiney??!! Whoa...how the heck can we not be just a tad resentful?? I sometimes wish he had never noticed me & "hit" on me!! I find myself crying about that sometimes & just maybe wishing I hadn't responded...I have yelled that many many times. The only thing I am glad about sometimes from this relationship is our daughter, who I love & count on daily for my sanity. She doesn't live locally, but I can at least "call" her & talk...I do have ALOT of years of wonderful memories, and I guess that's what "snaps me back" into reality...AND, I know that I have alot of people praying for us because they tell me often! I am blessed...resentful at times, but blessed & I try to remember this once I have had my "fit" of resentfulness!
I guess this is the B session..boy am I ready for it also. I just figured out that we are at least 6 years into this..I just took the personality change ..tantrums, demeaning horrible comments, etc. as something I had done...hello! The everything is your fault syndrome gets harder to deal with daily. Amazing that we all have the same person to live with!!! Just reading about someone else's same situation helps me feel I can deal for one more day.Thank all of you.
today, when my DH asked me about his former wife for the 16th time (or perhaps the 60th), who died 37 yrs ago, and to whom he was married a very short time (he didn't believe he was married to her), I simply said, I'm finished having this conversation. I simply cannot answer thesame questions over and over. I wasn't there. go look it up in your book (I had encouraged him to write his memoirs, while he still had them, and he lost interest when he got to the year 1971, which was when we met. That's where I wanted him to stop anyway. But at least I can say to him, go look it up in the book. those are your words. I was so full of frustration , first, why do we have to discuss this, I don't care. I want to have a nice conversation about the breeze, or the quality of the coffee, or the book I've been reading, (no chance of that). Resentment with a Capital R...
I find myself resenting certain friends and family who are busy building their dream home, traveling etc. and too busy to call to see how we are doing, let alone taking time to visit or go to dinner.
Ecchoing that comment Hildann and all the above. my 'dear sister' who is an RN thinks i am nuts to be caring for my DH at home all these yrs. she is of the sort that says 'find a nursing home' for anybody who is over 65 and ailing for anything including my mom. she sent an email to update me they has left on her month long cruise to europe. from scotland to greek isles..and how they are enjoying their retirement. i catch myself having bad thoughts (like how she'd react if HER husband got a fatal disease- then again i dont wish any ill will to anyone esp this type. divvi
Hildann-I can identify with that resentment. My husband has 3 adult children, not one of them ever calls me to see how he is or if I could use a break. They never invite him for an overnight visit so I could just relax and breathe. They have steadfastly refused to meet with his doctors, social workers etc. They just simply live their own lives and pretend there is no problem with Dad. Grrrr
RESENTMENT?? oh yessireeee..after a quiet, uneventful weekend..calm..I suggested that we go check the cows and take some feed to put out in the holding pens.. We are supposed to move them this week. My husband justlooked at me blankly and and didn't seem to catch on but when he did, he got angry and after we were at the feed store he flung out a remark about being 'glad to know someone else is tending to his business'.. Even tho I had taken a half of an anxiety pill,..it wasn't working and I just said..you know we don't have to do this at all. You seem to not want to do it. so we can go back home. I drove that fellow back home with hands on the steering wheel and eyes blazing straight ahead. Resentment..you bet. The man understands HELP as interference in his business..and he's incapable of tending to HIS business.. I sort of hit the wall..and said to self.. you know, self..the cows can jump over the moon for all I care. For the time being, I am officially ' resigned' from being the driver to the pastures to help him feed.. If anyone else wants to endure that kind of bad behavior..they are welcome. I resent that he isn't cooperative at all and that everything is a battle.. Oh yess.. that topic is a scorcher on this Monday.. Is it the moon??
Most of our friends have abandoned us. They call or email to me about the wonderful things they are doing, the trips they are taking, the friends they are entertaining.Then, they say "well, take care of yourself, remember you come first".Don't I wish that were true.However,unless you've walked this path, you cannot possibly imagine the hazards . I certainly had no idea.Resentment.....of course.
I prayed, I read, and prayed some more. And one day I realized, fully realized that he has started to die. And suddenly, I knew that I am the only person who can make that journey easier for him. He didn't ask for this and he has even less control over his feelings than I do over mine. For me, it has become more about doing the right thing for me.
Maybe I am afraid that if I start thinking about resentment , it will overwhelm me...
Alzheimers how do I resent thee? Let me count the ways... The swallowed words, the bitter tears, the unmet needs, the misunderstandings, the neglect, the loss, the emotional scars, the broken dreams, the shattered illusions, the leavetaking, the abandonment, the crushing responsiblity, the theft, the violation, the frustration, the loneliness... Yes you have dropped me to my knees on countless occasions.
Resentment - of course I have it. Shoegirl, you covered a lot of it. I resent the fact that I am giving up so much and that there is so little support and understanding. The normal reaction to a disease (not AD) is concern about the person with the disease - I see a lot of this. What I don't see is an understanding of what it does to the caregivers and what they go through to live with the disease.
Joan, in answer to your question. No you are not self-centered to be feeling resentment. Isn't there something about the 7 steps to accepting a death. I have found that many of those stages apply to dealing with this disease too - we just get to deal with them over and over and over as the disease progresses.
Therrja...you are so right. We do have to go thru all the steps of acceptance when dealing with this disease. I am now "on the other side", and I recognize that I did go thru all the stages in the eleven years we dealt with the EOAD. When people question my seemingly easy acceptance of my husband's death I tell them that I had plenty of time to get ready......he wasn't "there" for many years and I learned to be alone, take care of myself and build a life outside of the disease. It can be done....I am proof. The resentment came into play early in the process. The friends that disappeared, the fact that we, as a couple, didn't have a future, the losses...but, I gained a lot in the process. I am now an independent, happy and content widow. Did it happen overnight...no way...it took years, but when he finally died in March, I was able to pick up the pieces and go on. But, you have to go through the whole deal...it stinks, but it is what it is!
“Life isn’t fair. Get over it.” Anyone who thought of saying that to me had better duck. Life isn't fair, and we ARE dealing with it, one day at a time.
Resentment? I resent the absent family member who should be offering some respite time so that I can regenerate and carry on for him. But, resentment doesn't fit in other places of this situation after looking up the definition again. I do feel for what everyone is experiencing, some of it I know all to well and other experiences I dread them becoming our reality, some may or may not.
No, my dominate feeling is anger. My life, our life, his life has been taken from us and it has been a damn good life. We sacrificed and worked hard for what we had, did and learned. I get furious with God for this and figure that if s/he can dish it out, then s/he should be able to handle it - just like me.
The grieving process is a cyclical one according to Elizabeth Kubler-Ross. Bargaining was never an option, denial I do from time to time to control my rate of having to accept or deal with the pain and responsibilities. Anger is very real but it comes and goes. Depression is always somewhere in the house, waiting a turn but I combat that with therapy. I work with a woman who devotes much of her professional time to Alzheimer's and caregivers in particular. She also facilitates the support group that my husband participates in. We are both available to each others therapists and do check-ins from time to time. Acceptance - my husband always said that he appreciated my ability to accept rather than tolerate. I have to accept what is happening to us so that I can care for us. This partnership is no longer. He knows it is harder for me most of the time than it is for him. I grieve and have for going on 8 years.
We have to learn to take care of ourselves so that we can continue to take care of our spouse - significant other. I have learned to be quite outspoken about this disease for those of us who have had it thrust upon us. I have had to speak up to family members and friends who care but don't know how to show it. No one deserves such a nightmare, but there it is and it has to be faced. While I admire strength of spirit, I never assumed I would get so strong and have to get stronger yet.
Yes, Alzheimer's - how am I insulted thee? Good job, Shoegirl.
The statement that we have to remember for two is the one that hits home for me. Even if it was just the remembering and reminding, that wouldn't be so bad. But then there is the nagging for him to actually do the few things left in this world that he can do for himself. I have to repeat and nag about at least 20 times before he does them. There is also that thing where he says "yes, I'm doing it" when in fact he hasn't moved a hair for the last 15 times that I reminded him to do "whatever" it was. Do they think in their minds that they are in fact doing it? I just don't get it.
I also feel like we were robbed of the life that we have worked to attain. It was in our grasp and then blown away like dried leaves.
Resentment . . . anger . . . . some days I'm not sure which it is. Maybe both? It does help to be able to say these things to others that not only understand but have those same feelings and for the same reasons.
It was way way past time for my own doc visit. When I came out, the nurse said DH wanted to talk to the doc, so we went into the office & DH wanted to know when we could have sex! Well, there it was again, an intrusion into my life, my needs, my doc visit--it became about him! I had no life of my own anymore so I wrote in my journal that when I die there is to be absolutely no mention of dementia at the services--it was to be MY funeral and MINE alone. Anyone who mentioned any of it would be haunted and it wouldn't be pretty! And yet, as resentful as I felt at that moment, I knew that I did not resent caring for him that I'd do it as long as I could. But I did want my life back--it just wasn't to be.
Like Sandi, I am now a happy & content widow with a good life w/out my sweet love, it can be done. And, like her, I did not grieve in the obvious normal sense when he died. I'd had 10 years to grieve, there just wasn't much left to grieve about, he had left me years ago. I wondered what people thought about me at the funeral--I did not want him to leave me, but I did feel a profound sense of relief that I would no longer be living in limbo. I feel no resentment now & I'd do it again for him--for me--in a heartbeat.
I'm starting therapy on Thursday and spoke to the therapist this afternoon. We are going to be working on grief, among other things. She has worked with caregivers before, and possibly with dementia caregivers.
Sandi, your words are a welcome reminder that we can get through this. This thread bares our very deepest thoughts and fears and resesentments. Words such as yours do really help me see that although I must live today for my DH, I also have to think of me and be hopeful that there will be a future. Planning for a future gives me hope and helps me get through today. Right now I'm planning ( mostly in my head) my new "craft/arts" room. Actually I'm re-doing a bedroom to be totally my space.Who knows if it will be completed or if I will ever actually do crafts. It is the planning I need. As our friends have dropped away, I have looked hard at how I can make this new life bearable.
It helps to have Sandi and Bettyhere staying on the forum. I've been wanting to say that for a long time. It helps to know people who have survived the entire journey and who have reached the other side and who are OK.
This board is amazing, seems like I will be experiencing some feelings, despair or thinking I am alone on this journey. I come to this board & there is a post to what I have be thinking. Resentment, OH YES! I have found myself lately thinking about things that happened 15 years ago. My husband always put himself first, done things that I forgave, however, never forgot. Now it still is all about him. I resent that at 58 years old I live with a man that acts 80 years, mixed in with a 4 year old. (sorry if I offended anyone 80) I am so glad someone mentioned the friends that e-mail you with their vacation plans or what they did over the weekend. I always resent those e-mails, then feel guilty because I felt that way. My best friend lost 2 husbands, so I should be happy with her 3rd she is taking vacations. I hate that I feel resentment, however, I do.
I don't really resent the fact that old friends are doing wonderful things that we can't do anymore. What I resent is that they can't find time once a month (or every 6 months for that matter) to have dinner with us or even ask how my DH is doing. I hope I would be more conscientious if things were reversed.
Therrja, I have been thinking lately about how we go through the stages of grief over and over again each time our LO's lose another skill/ability. Lately, I've been feeling a lot of resentment and feeling guilty about it too. I resent that I have to be pretty much a "single parent", raising our 3 young boys without real input from their father. I find myself yelling at DH for not being able to follow the simplest instructions, for letting our 2 year old take things out of the pantry because DH can't remember to close and lock it and to dump water on the floor, when he's supposed to be "supervising" while I'm at the grocery store. I yell at DH and then feel terrible afterwards.
I resent that we have the most "stable" marriage we've ever had, now that DH doesn't have the outbursts or do the name calling like he did in the past. I realize now that a lot of that probably was signs of AD but I had no idea. Several times we were close to divorce. We've only been together for 11 years, married for 10 so I don't have the long history with him that some of you have with your LO's. I wonder if I've ever really known him, and I resent feeling that way. Is this sweet, relatively complacent guy the "real" him or was it the stubborn, rigid, rage-prone him of a few years ago, or the charming, funny, smart, somewhat hot-headed but mostly rational guy I married? I resent constantly wondering about that. On my darkest days, I wonder if he'd have even "chosen" me if it weren't for early AD, although I really don't think it goes back that far. I hate the nagging doubt and resent that I can't have a "real" marriage with a partner who helps with the household decisions and helps raise our kids.
Ok, I'm done ranting for now, but it sure feels good! Thanks, Joan.
Yes Joan, I too am adjusting to the role of caregiver and I think in ways that involves resentment! Is that part of the greiving process we are accepting loss a bit at the time? I now sleep on a foam mattress on the floor and we both sleep better. Last night, as I don't go to sleep easily at all, I realized I think I have resentment I didnt even own up to myself. It seems I find myself seperating myself from him into another room, a different bed, just however I can since I have no relief otherwise from the caregiving- no sitters or family that sit with him, so I find ways to avoid being right there when I AM right there!!! Otherwise , I become frustrated as nothing is about me anymore, or my wants other than things I am forced to take resposibility for whether I want it or not, like house repairs, maintenance things, etc that I was minor in making before. You start the day with everything all about HIS needs and getting HIM dressed, and HIS breakfast, etc. etc... with little to no appreciation. I think you would have to be abnormal not to have resentment of being robbed from this disease and all it entails!! decblu
I know I shouldn't resent opening an e-mail from my best friend, in which she tells me all the things she & her husband done over the weekend. Then she ask me what did I do. Well let's see....I vacuumed,cleaned toilets everytime I went to use one, went grocery shopping at a snails pace, tried to explain it was evening & shower time without much luck, just to name a few exciting things. I should be happy for her, she has lost 2 husbands at a young age. However, I want so bad just to tell her "I hope you are not offended, however, I really don't want to hear about your weekend" It just like someone sticks a knife in me. Vent over.
Kadee just because we are in purgatory doesn't mean the rest of of the world stops turning. You're wasting energy resenting others' good times. Yes-it hurts.
Wow, reading what others are dealing with, makes me embarrassed. My husband is 85 yrs old, and we've been together for 37 yrs. Of which 30 were great, and even the last 7 were bearable. You folks like Kelly, just break my heart. Yes, I resent that I have to do everything, but I'm not a single parent, or even a single grandparent, and I have wonderful kids who are always there. Kelly, and all of you dealing with EOAD, you have my prayers. Anita put it perfectly for me, He's dying, and if I can make that journey less horrible, that's why I'm here.
Kadee, I live in a 55+ Community, and when he was first diagnosed it really hurt to see the couples walking up and down our street which leads to the clubhouse. We bought here in the first place because it was close and I couldn't walk far. But it used to hurt a lot more than it does now. I kind of got used to it.
This is not the retirement I expected to have. We were going to do some travelling. We bought a SUV with the ability to pull a lot of weight. We were going to rent an RV and try that. Rent a boat and see if we would like one. Go places and do things. The going places and doing things stopped pretty quickly. One big bus trip to Virginia. One very line cruise. We stopped going to community events. We stopped getting invitations to small parties. It all stopped. And I was very lonely.
So I understand how much it all hurts. I think a lot of us have been there and done that, or are still there and doing that. And it is OK to vent.
You wouldn't be human if you didn't feel the resentment you do. The trick is to feel it, get angry, and let it go, or else it will eat at you.
I know a woman who is so stressed all of the time, and complains about it constantly, how life is just too much for her because.........................well, it's just so stressful trying to decorate TWO homes, and when napkins for the wedding aren't exactly in the right place on the table, and the cleaning woman didn't do a perfect job...........well, life is so stressful, what's a person to do? I'd like to kidnap her, put her in my house with my finances and my husband, lock the door, and not let her out for a month. Then she'll see what real stress is. I guess because she's not a friend of mine - just someone I know through someone else - I don't let any resentment build towards her. Wasted energy on my part.
So, yes, Kadee, I understand exactly how you feel. It's okay to vent. That's why we're here.
Thankfully, I don't feel like this everyday. Just when she ask "What I did over the weekend" I have said, in the past that the weekends are the same as weekdays. I guess while I am in the mood to vent, I really don't feel as if she really cares anyway. Sure she says, that she worries about me, but doesn't do anything about it. She has suggested were all meet about 1 hour away from both of us for dinner, I always say great, however, it never has happened. I guess I feel resentment too because I thought I was really a good friend when her 1st husband died, I drove 2 hrs one way at least 3 times a week to help with whatever she needed. Called on the days I didn't go just to talk. I could use someone to talk to sometimes.
Kadee, We can all use someone to talk with..most of the time. I miss a simple conversation without conflagration. I have mentioned that to my SIL casually, and also to my best friend (several hours away). They both picked up on it immediately. My SIL travels all over for Nike, but every time I watch their boys, I get a phone call..from France, G.B., Australia..where ever he is..and it is a" thank you and is the TV working okay, and what have we been doing". Makes such a difference in my attitude. My friend is on the phone just to chat as though she were next door. Just a few minutes to mellow out.
Kadee, I would call her and ask her to come and help you for an afternoon - even if it is housework, or to do one of the things you did for her when she needed you - instead of a social dinner....Just to see how she responds..
Coming to your house and having lunch with you and spending the afternoon would be a great time for you, if she is willing.
I, too, resent that our friends are still going and planning the next few years trips, while I'm making certain that I have help for my husband lined up and trying to stay afloat! However, that was the coin toss, so I'll take my small pleasures and be grateful for them, and hope someday to look forward to the future again. It is SO hard though!
I am fortunate my 2 daughters live close and we have a good relationship. They are just a phone call away if I need help but I try not to bother them any more than is necessary.
We lack "close friends". We have always had our own business and worked with the public in retail and didn't cultivate friendships. I have acquaintance and we live in a rural area. Whenever we see them they say "let us know if we can do anything or help". I just nod and thank them. I don't know what they would do if I said I need someone to stay with DH this afternoon for 3 hours, etc.
And, I am guilty of the same thing. It has been said before, we should pose the question like, could I come over and visit this afternoon or take him to lunch or let you go do something for a couple hours. If I ever get free and able again I am going to try and practice what I preach in that respect. I imagine those friends do not have any idea how to "help".
Resentment: I had never thought of it that way, I felt guilty to think I resent this disease. But I certainly do. I resent the loss of my friend, my lover, my life. I resent that he no longer understands, no longer cares about anything, no longer takes pride in anything. I resent the TV and its all consuming hold on him. I resent that my yard looks neglected because he no longer takes care of it and I am too tired from taking on all the other responsibilities. I resent the loss of dreams for our future, to think of the future is to think of torture, for him and for me. I resent that my children do not want to accept what is happening so I have to go it alone. I resent that all the responsibility is on me now. Please do not think that I no longer love him. I love him more than life, but he is too young to have this happen to him. I resent that I cannot change his future, only make him more comfortable while this horrible disease takes him away, slowly and painfullly. Yea, I have resentment....
sandyD if you don't mind my asking-what are your ages. I assume your children are adults. My adult children saw the actions of their father and they saw me at my wit's end. We drove quite a distance for our son's wedding and husband threw his first all out temper tantrum and refused to attend the fuction. This was before diagnosis and we were all stunned. Had no idea where all this venom came from.
I am 58 and my husband is 60. Our children are 37 and 36. They see their father different but have decided that it is easier to say I push him too much because he is more laid back than I am. They have seen anger that has never been there before but seem to always find a reason. If I try to talk to them the response is usually " I just want to focus on the wellness not any illness' we are not sure he has anything more than boredom". You can imagine my frustration. I watch him deteriortate daily but cannot do anything and you are the only ones that will listen and really understand what I am dealing with. Thank you all for being there...
This might be an option for some of you with your children. I took my 47 year old daughter with me to one of the NEURO Apointments at WVU and she heard the same diagnosis that I did. They were not questioning me about him but I think hearing how things were directly from the Doctor made it more real for her and her siblings.
Imohr, I did that too. I just had her walk into the room with me, and they provided a second chair. I think they have this happen a lot, and don't have any problems with it.
My daughter wasn't in denial, but if she had been, watching that not-quite-mini-mental would have taken care of it.
I am very resentful for all of the reasons mentioned above. No more enjoyeable retirement - instead must start planning ahead if I need to place him and pray that our money does not run out before he does. Resentful that I am forced into a caregiver role and get nothing in return from him except things like extreme confusion, anger at me if I don't entertain him immediately ( not many things even entertain him).Resentful that my DH is causing so much turmoil in our family life even if it is the disease. We have been married 30 years, but many of them were hard as he liked to drink too much which did cause havoc, but probably prepared me for being independent. I probably resent him for having this disease though he did not choose it. I am resentful as I planned to keep him home as long as possible and now he is being so difficult (extreme anxiety, verbally aggressive at times, and no ability to express himself so he goes on and on about things that make no sense and I can't help him because I DO NOT UNDERSTAND A WORD HE IS SAYING. And last of all , and the worst thing to admit out loud, is I will resent it if he lives a long time and we run out of money. This is an awful thing to admit, but we will be fine financially when he passes, but I do worry about running out before then. Am I awful or what. I am also resentful that I am not a very good caregive sometimes. Oh well, venting is good.
Alice when I was a very young student nurse I thought it was terrible when some family members didn't seem to care about their old ill parents. Much later I learned that many parents were terrible to their children. Just because they were old and ill didn't earn them love and devotion. Many of us tolerated loveless marriages for various reasons. No-our spouses didn't choose dementia-but neither did we. When we lose all our hopes and dreams, and fear for our financial security it is difficult to not feel resentment.
Alice, You are absolutely not alone in your feelings. I'm right there also. We have a long road ahead from what I "hear" from others here, but I already resent the path. We are in a mellow mode at the moment, but know from past experience it will not last. We have zero option for $$$ and with the market as it is, I feel the sand giving way under me. In most other situations, there are alternative routes..not here. No help...no relief...no shit!