I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. As always, I am wondering if any of you are feeling the same as I write in the blog. Please post responses here. Thank you.
I also feel resentment but not so much sadness. My DH was never a handyman so it was all up to me. He never took care of finances so that also was up to me. It was up to me to arrange and plan vacations etc. I am so sorry he has Alz. but I didn't cause it but I sure do resent it. We never had children so I never through all that entailed and now I am 72 and having to go through child rearing and I resent that too. Sorry if this post upsets anyone but I can only tell the truth.
That's the whole idea of my blogs and this website - to tell the truth as an Alzheimer Spouse feels it. That's what I do - tell the truth, and you should not feel bad about doing the same. I feel resentment for everything I wrote about in the blog. Can't help it. I do.
I feel much the same - and we can have conflicting emotions all at once. I do. I also feel resentment a lot of the time. Sometimes I think it's unfair this illness is taking two of us down. It is a physical struggle to take care of him, and it is wearing on me. It's also taking a huge emotional toll. Many mornings I wake up and just don't want to face the day.
And I am away during the days - working full time. He has aides who do the heavy lifting while I am gone. What I resent is coming home and having to put out fires: fight with the insurance company or the homeowners association, solve the problem he's having with his computer, fix something broken in the house.
He was never a handyman, but he was the finance person in the house, so I never had to do the bookkeeping or pay bills. Now, I have taken over all of that. I do it on Saturdays because I am just too darn tired the rest of the week.
And yes, I feel sadness too ... because this is not what I expected to happen. Losing him physically to a neurological disease was one thing. He was always in good spirits and handled the whole wheelchair business admirably, But losing him mentally ... a whole different thing.
One more thing: I am so glad that you are just like the rest of us, Joan.
Too often support groups are anything but ... and there is always that person who criticizes others who feel angry, resentful, sad, etc. I prefer it when people "get" me ... understand me ...
You can't put a positive spin on dementia, and you can't deny that it shakes your marriage to the core.
I really try to focus on what I have & not what I don't have, but I identify with so much of your experience. If this were a 1 or 2 year deal, I could do that, but my husband's parents lived into their 80s and he is only 69. I am 64 and don't plan on doing this another 20 years. I resent that the disease is draining his IRA (thank God he has a small one) , and everything goes to his crae/ medical needs. I used to love to play MahJong. Played 2 times a week....but not anymore. I have 3 days a week free, and plan my away time carefully. I resent that I have to do that. I am also sad that this man who was a finacial whizz can't even count from 1-10. I am sad that most of his friends do not see him. I am sad that he now needs me to tell him how to shower and where to put the toilet paper. I am sad because we can't have a good hearty laugh anymore. Such a slow, painful decline! Recently a woman in my Alzheimer support group lost her husband and, to be honest, I was envious. She is now able to move forward. I am not.
dear Joan actually I did try refreshing it twice and both times it did not come up. It is up now and I did read it. Hugs and lots of empathy go out to you and the others here who are struggling to care for the spouse. The journey only goes in one direction unfortunately and while talking here does help to relieve some of the stress, tension, and emotion you can find some solace in knowing that God understands your struggle and is with you every step of the way. I know that may not be what you want to here but it is His comfort through your prayers that will sustain you in the very long and hard journey. It may not sound like much but if you search you will not find anyone who can provide the comfort every day and night for the entire journey, and after the end comes He will still be there for you and you can still find comfort in His love. May God bless you with His strength, wisdom, patience and yes even peace. I pray for you and all the others that I have met here and ask for God's blessings in their lives as they struggle with their individual issues. Bless you for this website it has been a blessing to us all. Bruce D *
The remote yes remember Joan how I was so upset about that too? When he cried he was so upset about it.
The handyman, the fixer of toilets, the tree pruner. gone. Now he picks up one leaf at a time and walks across the street to throw it away.
I have felt a sadness around "the edges" this past few days, after a long stretch of keep your chin up martyrdom. Time for a cry. I miss my honey so much. And how it hurts, the resentment towards the "Cinderella " sisters, that look so down on me. God forgive them. And He has shown me lately, that I am worthy of the greatest love of all, that I have a spirit of love, from the Creator of it, because that is all I really want. To be what God wants me to be.
A prayer of friendship, love and support, to every one of you.
Resentment and sadness. Oh, yes—I feel those, too. And a third feeling is gaining on them. Fear. Fear for my husband, fear for me, fear of the future. Big-time fear, and only me to figure out everything that needs to be figured out.
It always amazes me that if we express any negative emotion about this life of care giving, people seem to want to ask, "Don't you love your husband? Don't you want to take care of him?", like love would magically make everything work out. It's the nitty-gritty of years of doing this that creates resentment and sadness, not to mention bone-weary exhaustion.
Excellent blog today Joan...I am feeling the same conflicting emotions....so difficult to cope with, which is the reason for the brick wall around our hearts! But it does crack and crumble in places doesn't it... thanks for posting!
Thanks Joan you put my thoughts into works again.I feel really bad these days because while I love my DH with all my heart I do not like him very much most days.Does that make sense??
Conflicting emotions are so wearying. Resentment and sadness-but no one to blame. It's no one's fault but caregivers are left holding the bag. Then there is the GULT. Would we be upset for a baby soiling its diaper-of course not. But when our LOs regress dirty diaper duty wasn't in our plans. It's pretty hard to accept. So much wasted emotion ;0(
i dont resent the hard work of caregiving as much as the loss of us as couple and the wake of devastation that comes with the long years attached to this disease. the sadness comes when i now see the shell of the body of the once vibrant, intelligent, wonderful man i married that has turned into a feeble, dependent, and infantile human that now takes his place. on one hand we desire that they go quickly and not suffer the ravages of end stages, but then enters the conflict of losing that half of our lives together, keeps us clinging to the need to sustain that same life. its a constant emotional battle.
Joan, my heart weeps with you. I have only been here a few days and the amazing wealth of emotions real honest stuff has been both eyeopening and cleansing to me. I have no idea how many many have made it through an hour or a day from something that you have written and lived through. Two days ago(I think that's when I found this site), You had the courage to tell how poorly you were treated by a once loving husband, and it took much more time for you to ever find out what was going on. Until I read one of your blogs-I had been living in that same tunnel of silence and pain, probably for 8 years with a diagnosis coming a little over a year ago. Your courage lifted a 100 pound weight off my back. You most certainly do have the right to feel resentment and anger because it just is not fair. It appears to me that the kindest, most sharing and loving people are the ones on this site. Not a one of them deserve this. I know it has to hurt so bad, but I also know from reading your blogs that you will walk through this with honesty. You said the only way out of resentment is to own it or we will never get better and you for sure do that. Blessings, cookieemarie
Whereas I also find myself dealing with some resentment, it's the daily sadness that really gets to me. Each time my wife says something that is totally off topic in mid-discussion because she has forgotten what we're discussing ... that is so sad. Watching her struggle to figure out why she has just gone into the kitchen to get something but cannot remember what it is once she gets there, or watching her open the refrigerator door and just stare because she cannot remember what she was looking for... that is so sad. The sadness each day of seeing my wife no longer even a shadow of that once intelligent, energetic partner and best friend I had for 40+ years ... that is just sadness beyond words.
I am with you all the way, Joan. My DH does not have the physical challenges that yours has, but he cannot use the phone, the remote or even shave himself very well. He uses hand signals for words when the words don't come. He resents me putting out his clothes, but would were the same clothes every day without changing . I prepare his pills by the week and give them three times a day. I looked at an AD program in an assisted living facility which was so costly that any money we have would be all gone in four years. He is in good health, he has had AD for at least 12 years and could go on for 12 more. He goes to a day program 3 times a week. My social life is nothing. I don't want him to die. I want him back the way he was. It is sad. and I resent it.
Maryd....Your comments bring tears to my eyes. We all want what we can't have..."back the way he was". It is so heart breaking. My dh also has COPD and a severe heart condition on top of the Alz so I know he is really at risk for most anything to happen at anytime...I do hope and pray that it is something painless and quick like a heart attack. And, the tought of something happening to me and not knowing how he would be cared for makes me very, very sad.
My saddness is for my husband who can't control his fate. Resentment is a big energy zapper for me. So that's an emotion I can't have and survive. For me to survive is acceptance of what I can't change. Everyday is exhausting and then the next turns out to be more exhausting and just when you think it can't get any harder it does. I do all the back flips, burn the candle at both ends etc. the things we all do but Saddness for him is the emotion it musters. I get anger when he pee's in the laundry room and says "what's the problem" and then actually later I just laugh because what is the problem, laundry room, bathroom floor, bedroom carpet it's still cleaning up pee. As this journey gets harder (and it will only get harder) I ask myself to remember myself and give myself a break at being human and tired and definitely not perfect. No answers, no quick fixes just a hell of a bumpy road for us all.
I found it got easier as the disease progressed, not harder. It was different and sadder. But I think the early stages were the worst, and I think that many people found the same thing. The stage you're at now is crazy-making - I found I couldn't keep up and was going from one catastrophe to another. Hang in, Terry, it will get easier.
I agree with Mary--it gets easier. The hardest thing for me was to have conflict with my spouse, which was a completely new element in our marriage. As the disease progressed, he became docile and much easier to care for. Yes, the physical part is exhausting, but I think it is the emotional drain that is the most difficult to get through.
I have a question about peeing strange and different places. I do not have this problem with my dh yet, but was wondering if you use the pads, etc. with your dh since he has this problem. I also am wondering, if and when a dh has this problem would using the pads, etc. and then sewing his pant's fly shut help? Also, how about putting his belt on backwards. Call me stupid, but just wondering if these type of things have been tried.
I don't think using incontinence products will help this problem if the LO still recognizes "the urge". The problem is that they don't recognize the toilet, and urinate in other places. It only happened a few times here, because my husband was supervised almost all the time. We could direct him to the toilet if it looked like that's what he needed.
ah Judith welcome to my world of creative ways of the at will pee pee land.......first I use the Tena Men heavy protection underwear (super plus) which I buy in bulk. They are like underwear and he wears them fine for night time sleep. I have taken Vicki's advice and purchased my waterproof Matteress covers and they are on all the beds in the house. Around the toilet are doggie pee pads with two (yes two) towels over them and one covering the front area as well. DH sleeps in a seperate room a) he's a very light sleeper b) I still work and need to get up early. In the corner of the bathroom is a (looks like tray holder for bus boys) retangular container with a towel in for any way ward directions. Along with pee pads and towels in any area he's found in the bedroom. He doesn't know where he is and I have never gotten upset with him, accept once in the laundry room and I was too tired and should not of yelled. I keep him in sweat pants during the day and always have a urinal in the car with wipes, gloves and clean cloths (again a suggestion from other spouses) I have someone who comes in the AM and does is bathroom routine. She cleans the down stairs bathroom and I clean his night time bathroom when i get home. I walk the carpet in socks to find and new places he might have discovered. I always clean the upstairs, it's the biggest mess and to much for her to carry down the stairs. And on a funny note......he describes her as "the women who takes down my pants" He can't remember her name.....she finds that funny too. So that's the world of pee pee land .....and yes I am grateful for at the moment it's not the other issue.....on my gratitude list :)
once they start having incontinence issues i found flys in pants- or buttons or zippers were taking up wayy too much time! just the pants that pull down with elastic band will add some much needed time to get to the toilet and get pants down easily. if they have to go they will find a way believe me. and there usually isnt much time once you notice they want to go. i always had those white plastic garbage pails around the house just in case to catch it if he was pulling at his pants and no way to get to the toilet. mine RARELY made it to a toilet. watching them 24/7 is almost impractible and i did alot of it trying just that. even then he'd escape me. taking them for regular potty breaks may help as others mention IF they are willing to sit on the toilet or stand there. then again get the clothing off to sit them, well that death grip i talk about, you may experience that as well. oh those were the days. i feel for those of you in this stage, but it is possible to get thru it still sane, (i think:)
Oh, I forgot, we did the toilet schedule of every 2 hours. It did help a lot because all needs to urinate were addressed. Of course, it also seemed like I was spending all my time in the bathroom, but I preferred that to cleanup duties! I just kept setting the timer on the oven for 2 hrs to remind me.
Thank you for the on-point blog, Joan. There is such a range of emotions in this that I find it impossible to pinpoint any one. Exhaustion overrules everything. Resentment flairs, sadness brings me to tears on the spur of the moment and in the entire process I think "how long can this go one? how long can I go on without hope?" That is what is missing in this perfect storm that is ALZ. I feel no hope, for my DH, or for me. I have been working on the "Finding Maggie Project." I am trying little, by little to remember what I liked before Carl. Tonight, I am just sad again....
My husband's progression seems very slow. Maybe I just can't see it but slowly, I am going down too. Bless each of you for what you are doing, in whatever form, I think we all do the best we can with what we have been handed.
Joan, again thank you for putting into words what we all feel and sometimes don't like to say or like me even struggle to put into words... My Dh who could do anything, if he couldn't fix it it couldn't be fixed...layed bricks, ceramic tiled a whole house, put up patios, built us the most amazing furniture..now can not even put a garden hose on a tap... all that and my sadness is he is fading away before my eyes.. The resentment is that we can't do anything to help, but be there in this slow cruel journey..lost myself, my friends and any life we had before.
Just today this came up in our ALz mtg...we all seem to resent the theft of our plans to travel and do the things that had to wait until the kids were out of school and we had some funds now for our fun..only...now we are cheated out of it. And we get so frustrated at the sameness of every day, set out the meds, make sure the LO eats something, make the bed, get the laundry going, iron, dishes, cleaning and then more of the same errands to the doctors or phramacy, grocery and get the cars to be tuned up, pay the bill, get a contractor to fix the things around the house that need a contractor, and there never seems to be time for ourselves other than a trip to get our hair cut or a bubble bath..big whoop...no time for real hobbies cuz there is no time to get out to do it...everything we tend to try to do for ourselves is done in a rush.. Then there is the new kick in the gut when yesterday the LO could could do the math and today can't subtract, can't recall an important date ( anniversary) or any other big holiday..not their fault and then we see these horrible ads on TV for these dang Cialis ads with the couples off on a dance floor, or out on a picnic or well just being normal..and that is all gone along with all the other things like walking well, eating without a fuss etc.... And the resentment for me comes with the kids all telling me all the happy events all the time as if life is one big picnic where evey day is a holiday and every meal a feast with their heads in the clouds and we want to scream " wake up, don't you get this?" O find I want to rebel and sometimes I do..I get sick of making all the decisions,,he can't even tell me if he would rather have a ham sandwich or liverwurst...I get " whatever you're having is ok with me"... I guess for us it is normal to have all these feelings all at once but it doesn't mean we don't love our spouse.
Thank you for your blog today. I admit I look forward to your column every week because I identify so closely with your feelings. We are about a year out from my husband's diagnosis, but it's been years that we've been living with the symptoms. In some ways, knowing what the problem was made it easier to not get so angry and frustrated but the road to complete acceptance is very long and bumpy. Because if I fully accept that he has this dread disease then I must also accept that all of the terrible things people write here are going to happen to us.
It is the layers of competing and even opposite emotions that are so hard to deal with. I need to keep some emotional distance from my husband so I don't take things so personally, but at the same time, I need to stay emotionally connected enough to feel love and compassion. But when I'm feeling connected, I am so sad my stomach starts to hurt and I want to lay down and cry for hours. When I'm feeling disconnected, I get angry at him, the situation, and the bitter unfairness of it all. And all of his happiness comes from me being happy, so when I'm not happy, he suffers.
I am 55, he is 57. He doesn't drive and goes everywhere I go. I used to work at home--now I can't work at all. I worry. I try to do a thing a day, but even that is like slogging through mud. I don't have anything good or new or interesting to say to any friends-- they are all still busy raising young children and making plans and looking toward the future. And I don't particularly want to listen to anyone either. For a while, I could sneak away for an hour in the neighborhood, but last week he couldn't figure out how to make the phone work so now I don't know if I can go anywhere alone without worrying about his safety.
Anyway, I know there's a lot to do and I need to find help but it does all seem quite overwhelming. I've done everything I'm supposed to do--medically, financially and legally. I've contacted Alzheimer's Association and Caregiver Groups and blah blah blah. Nothing is making this despair and horror I have in my heart any better. Except...
reading that this is what you feel when you take care of your loved one who is dying from this evil disease. And for that, you, Joan, are on my gratitude list. Thank you.
Hi Bunny’s Lamb. I could so connect with what you wrote. I have also emotionally distanced myself from my DH (emotional divorce), but like you said, in order to feel love & compassion I need the emotional connection. A vicious circle. I can’t leave my DH so he goes with me everywhere unless he can stay with our daughter for a few hours. Yes, this is the only place where people actually understand what you are going through. Joan you are on my gratitude list too!
My heart just breaks for those of you still in your 50's. To me that is sadder than what we are facing. We are in our late 70's so have had a long life together and got to enjoy many retirement years. Now don't get me wrong it is gut wrenching for me to see dh go down so much from what he was. It is hard for me to get things done that he always did. I just simply forget because I never did what he took care of and some of the things he did around the house and yard I never knew about. Now I know because they aren't getting done. My energy level is low and my patience short. He tells me he loves me and I know he does and I love him dearly - it is just a different kind of love than we had before az moved in.
You all are so correct. Trying to do all the things we have to do and add to that the things are spouses did and constant caregiving is a very difficult task for us that are of advanced age. Emotionally it also takes its toll.
I try hard to think that I am doing a great job and that I am more capable then I ever thought I might me. Also, there is some satisfaction in making all the decisions and not having conflicts with a mate regarding those decisions. Until a person has walked in the shoes of a caregiver they have a difficult time understanding how all comsuming this can be.
So difficult not to feel anger and resentment. There are times thaf rage is a better description. I am fortunate to reside in a privileged area. At this time of year sitting by the pool listening to neighbor's talking about their summer travel plans to Europe, cruises to Greek Isles, etc. makes we want to scream. My DW and I worked long hours 7 days a week and were lucky enough to "make it" only to end with a lifestyle that now is reduced to:a trip to the supermarket can be terror filled if DW darts away. In spite of being lovers for more than 50 years the excitement never waned. Now I reside with a shell of my Dw, who is incapable of expressing any emotion. in spite of friend and family a loveless existence does not result in many smiles. I resent the fact that this disease refuses to leave with a moments peace. I find that getting away from it all to be any but relaxing. I worry how's she is from the moment my infrequent alone times begin until I walk back in the door
I echo your last sentence, Nelsons. Went to get my hair cut this morning and was finished quicker than I had thought so had a little time to do "something". What did I do??? You got it - I headed home to see how DH was doing. No rest for the weary.
I have to keep saying it -- so fortunate that good friends steered me to this site. I appreciate everyone's honesty -- no sugar-coating, no denying the emotions we're feeling.
This is my first time on here. Thank you Joan for your words. When I read them I knew I needed to be a part of this. We are still fairly well as far as personal hygiene. A few bumps and does tend to wear the same thing everday after he launders it every night. My husband used to cook and did all the gardening and canning. The changes in this were my first hints. Anyway, I am mostly sad. He will be 65 next week and I am 61. I have oldies on my Mp3 player and when I listen to it I remember all the fun we had dancing at receptions and parties which I thought we would still be doing. He doesn't even attempt to fix anything to eat for himself which I guess is a good thing. My resentment is that he thinks if the car leaves the driveway he has to be in it. My thoughts to all of you on this unplanned journey.
JGranny welcome to your new virtual support group. Others will be along to welcome you too. You can come back anytime (we’re here 24/7) to talk, rant, scream, cry. We ALL understand. My DH will be 65 this year & I am 62 so we are in the same age range. I can’t leave him alone anymore, so unless he stays with our daughter for a few hours a week we are together 24/7. I do all the cooking, cleaning…..well everything because he can’t follow any kind of directions. We are going on 6 years from hi DX, but there were signs before that. Again welcome!
Welcome JGranny-I hate "needing" to be in this club but as so blessed to be a apart of it because so days these wonderful folks are all that keeps me going. My Dh will be 65 in the fall and I will be 62- sorry to say you will ""hear"" much venting from me but at least they listen here and have not thrown me overboard.(yet)
JGranny, another welcome to you. I understand the feelings you are having. My husband is the same way. If our car is leaving the driveway he thinks he should be in it. Our son borrowed the car the other day and he tried to follow him out to the car. He had to be physically barred from leaving. The last time I left him home with our son because I needed to help my parents, I snuck out the front door while he was in the family room. The time before that my son said he tried to get the door open a good 1/2 hour after I had left. The only good thing is that locked house doors don't bother him at all.
It makes me feel horrible to see this need to always be on the go.
I can still leave him alone, but he would rather be going somewhere. While I am still getting ready to go somewhere he goes and waits in the car sometimes as long as 1/2 hour no matter the weather. Or he will pace. He also talks about himself in the third person. Ex: T lives here. T made it home. What's T going to do? This is pretty constant. Is this done by others? Thank you again for welcoming me. There is something in almost every post that I can relate to.
Oh, Joan, I almost cried when I read this blog, it's so heartbreaking. I can only imagine your pain and I know that I, too, will be right there, feeling the same emotions, before I know it. I wish I could console you, send you relief, tell you the day that your life will be better, and that one day this will all be behind you. That day is too far off in the future to even imagine for all of us, and, it, too, will bring with it unimaginable heartache. All I can do is send you great big bear hugs and lots of sympathy. LOL
Your blog made me cry too, Joan. I was watching a Home Depot commercial today with a happy couple doing Spring clean-up yard work... and it made me realize we can't even do simple things like that together anymore. My 2 year old grandson was here this weekend and my DH is not even at his level. Makes me so sad - yet, like you I have so much resentment as well. Definitely pulls your heart out to have such conflicting feelings.
I am mad at husband for putting me through what is to come. I know he is not responsible, but if he had been a loving, affectionate husband I think it would be different. After his affair we never really got a marriage back, but then it had to have been bad anyway. I think the romance was killed going through infertility treatment. Then we adopted two kids that I later found out he really did not want - he wanted biological. He only went along thinking that was what I wanted. Really, I am mad at myself for staying with him. Stayed through the affair diagnosed as detached personality disorder but was cured via counseling. Mad at myself for staying with him when he left me to raise the kids basically alone. Mad at myself, when after his dad was diagnosed and I found out the family history, I did not educate myself to know the probable future. Mad at myself for not having the courage and confidence that I could raise two kids on my own - I told my dil that is why I admire her.
I resentment and sadness that this disease has robbed us of the time I had hoped would rebuild a marriage with no kids around to block it. I have to admit, other than no sex, it seemed to be working a little. I resent him because my current life and near future are basically nothing. Yes, I am still workamping -looking forward to it and plan to leave next week or sooner for Prosser. I probably have love for him, but it is friendship love, not romantic love and has not for probably the greater part of our almost 41 years of marriage. How can you romantically love a guy who rarely ever says (past or present) 'I love you'? A guy who seemed to sabatoge every time you tried to do something for yourself (like take college classes, join orchestra, join something at church, etc) or have a female friend?
Yes, there is resentment towards him and the disease.
Sadness that our life and my life is going to be on hold for who knows how long. His dad lasted 25 years and he is progressing slowly -is that because of the supplements I give him, the interaction I keep him in - would he go faster if I stopped meds and supplements? His life insurance came due - I was in turmoil trying to decide whether to pay it because in 3 more years it will end cause the premiums will go too high to pay anymore. I have 6 months to decide if it is wise to keep paying it or use the money elsewhere.
Angry at myself for staying all those years ago. But, I try not to dwell on it cause it will eat me alive and I will be miserable. So, I try to live for the day - not the past and not think of the future because from here I know what lays ahead - hell!
Charlotte, I find that my anger, when analyzed, is usually anger at myself, for mistakes I've made or actions I failed to take. Give yourself a break. You deserve it.