I don't quite know how to start this, but I'm going to try. I've been reading Joan's latest blogs, and the comments, and it hurts my heart. Has anyone ever had a relationship with their spouse that wasn't so great? My marriage was okay for the first 30-35 years, then things started to change. I don't know if it was me or hubby, or both. I've never been able to think of him as my other half, my soulmate - I've come to realize that he is very emotionally "not there". I was very much in love with him when we married, loved him for many years, but I really don't seem to feel much now but anger, resentment & bitterness. He has loved me the best he knew how, but I realize it has been very much a dependency on me - I guess for him marriage is more about having another warm body in the house, someone to cook, clean, do laundry, an occasional roll in the hay (pardon my crudeness!), which I never found to be all that wonderful (good thing this is anonymous!). He was never abusive, he was faithful, he was honest - all good qualities. I'm trying to be thankful for the good things, but the hurtful things still just keep chipping away at my heart - I think it's about to shut down emotionally. This "thing" , Alzheimers, has made him argumentative, defensive, etc. - everything combined, I can't dredge up any feelings of compassion, caring or love. I guess what I'm trying to say (maybe not successfully) there is no real emotional connection between us, never has been, now never will be. I do this out of a sense of duty & commitment, but with anger, impatience & yes, sometimes meanness. The support group I went to a couple of times wasn't for me - felt like someone was judging me for having honest feelings. I can't afford therapy. I feel like I'm drowning. Any comments, support & suggestions welcome - hope you all don't think of me as an awful person. Just struggling.
I will venture to say that no one here will think of you as anyone but a person with an emotional load. You are free to vent at Joan's for which we are all so thankful.
You stated - "The support group I went to a couple of times wasn't for me - felt like someone was judging me for having honest feelings." That is EXACTLY why I started this website. I went to a support group (which eventually did help me in a lot of ways for the 4 years I went), and everyone was talking about "things". How to get their LO to shower; how to get them to DC; how to stop them from wandering, etc. No was was talking about EMOTIONS. I needed a place to talk about those emotions, and so I created it.
We have said this here before - Alzheimer's Disease is hard enough on spouses who have had loving, deeply committed marriages. It often makes us hate the stranger we are taking care of. So I can only imagine how difficult it is for someone who has not had a loving marriage. You are absolutely entitled to every feeling you express. That is what I strive for here - honesty - because without it, we cannot really understand our emotions or help each other.
Many here have had "not so great" marriages and know how difficult it is for you now. Some have said that as the disease progresses, and their husbands become more childlike, compassion comes and along with it, maternal and protective feelings. In time, and it may take until after their death, the bad memories will fade, and good ones grow stronger. Sorry about the bad patch in between - can't seem to be avoided.
Mim, as others have said, you are not alone and don't be too hard on yourself. Caregiving for a spouse with dementia is unbelieveably hard under the best of circumstances and a loving relationship but trust me even if the caregiving spouse adored his/her partner before the disease and behaviors, that love is certainly tested as the disease progresses, particularly if difficult behaviors are exhibited.
DH and I will be married 29 years this year and if you asked I would tell you we had a good, possibly great, loving marriage. But if I'm truly honest with myself, the first 16 years were great, not so much the last 13. He couldn't hold a job (thought he was lazy and in a mid-life crisis), stopped contributing to the household financially and doing the necessary day to day upkeep and bigger maintenance issues, became arguemntative, verbally and then physically abusive, started looking on-line for an "affair" or possibly a new, permanent relationship. Those years (200-2008) were unbearable and I was getting ready to see a divorce atty when he was dx'd with dementia. At least I had an explanation as to why our entire relationship changed so dramatically but even though I now know he was not fully under his own control, I am still angry about it all. Yes, I still love him dearly and am trying to do the best by him but sometimes it's hard when I remember the very bad, destructive behaviors. Now that he is totally dependent upon me I love who he was and love the "child" under my care now but in a very different way.
Mim, welcome, you will not find judgement here, but will find kindred sprits. We will laugh with you, cry with you and pray for you. We all found this site at different points in our journey, but we are here together, no matter how long the journey may take. Please feel free to use us as your refuge or sounding board. I am so sorry for the circumstances that brought all of us together, but we are together and hanging on for the ride.
I so appreciate the response -thank you. I suppose I'm feeling somewhat guilty about posting such things, but I do realize I'm not alone. I've read through many of the posts under "emotional divorce" - those struck a chord also. I keep thinking "misery loves company" ;) Thank goodness for company!! I'll be back.
Mim, My story is a lot like LFL. The last 12 years or so were not very good and I was heading towards divorce when DD hit 18. But as we all know to well it was not DH who was acting the way he was it was the AD. I was mad, angry and resentful at first. Look back to my earlier posts. But as time has gone by I have mellowed towards DH and his AD. I still get mad and I tell God I want to beat the s*!t out of the monster that is AD. But I am not mad at DH anymore. I feel so sorry for him. We never did have the kind of marriage that Joan had. Sadly I think DH lost the idea of who I was before he was dx. Our love life has been AWOL for many years. So sad how this all plays out for each of us. For several years before the dx I often thought I had a teenage boy, and in many ways I did. He would pout and throw fits if I asked for help around the house. LOL now it all fits into place.
Mim - you will find many post spread throughout threads from those of us that had not so great marriages - like you more of an obligation than out of love. We got married on the rebound, lust, and just as it started to blossom infertility. Infertility treatment does a good job of killing love or romance and many never recover. Things just went downhill after that. 42 years out of duty, obligation, fear of being alone, fear, - the list could go on.
Yes Mim, I can relate. I thought we loved each other for a few years, Then I decided that we got along because I was willing to go along with most of what HE wanted to do. For the last 5 years I have been angry and resentful. I have had no patience and it showed in my voice which got him even more stubborn. He didn't say a pleasant word fot days at a time. I'd ask him to go change his wet Jeans and underwear and he'd yell that i was bossing him around. The last 2 or 3 months have been better as he has been getting worse. Now he asks nicely for help with changing. He even lets me wash him in the shower for the last 2 weeks. I also feel badly that I let him get me angry so I am arguing with him. What good does that do? We all know you can never win an argument!
I don't know....could it be that maybe your feelings began to change when the illness began to sneak into your marriage? I often wonder that. Something very subtle happened and I know my hubby adores me and I love him too but it is all so different now...could it be that the disease, for those of us who were head over heels for a long time find we no longer are, maybe haven't been for some time but had no real idea what happened? And that maybe it was the disease that was sneaking in and the changes were so sly we just didn't get it?
Right on, Mimi, I attribute it to AD. DH & I were made for each other, never any doubt, but 'things' happened that just didn't sit right. And it started early, I think it went on for decades. Twice I dragged him to a marriage counselor and they didn't know either, just told me to leave him while I was still young enough to get another man. But I knew I'd never leave, in spite of 'things' we just basically loved each other, committed to our marriage and children, it was meant to be. I had no idea I was dealing with a brain disease--who among us knew that! Sometimes I've wondered what my life, my marriage, would have been like if AD wasn't always with us, but it was there making him do 'things' that annoyed me and he'd so often be confounded by my response. How could I be so angry when I loved him so?
Mim- I think this is what has been happening to you. AD comes on slowly for years, it doesn't just happen overnight. It wasn't you, him or both, it was AD that changed him and your response to it, which is normal. Try to understand he has a disease of the brain, brain cells are damaged, the send/receive that cells normally do is all messed up. He didn't ask for this, to tarnish your marriage, and he can't help any of it.
I never felt my DH & I were soul mates or best friends, I always knew we were husband and wife and I was happy with that. So don't let the way others describe their marriages think yours is anything less, we all have our own ways. If he was faithful, honest and never abusive, you've got a winner, it's AD that changed him, trust me, it's the AD. My DH would walk thru fire for me, so how come the day came when he raged at me, telling me he could kill me. How more hurtful can you get? It's the disease making him say hurtful things, really. And, yes, I too felt he was 'not there' and that things really depended on me, and they did, because, yes, I think those with AD do depend on us to keep them grounded. Try to understand the disease, it will really help. He may have the same body, but he's not the same man--not even close.
Mim, When I read your post I could have written it myself.
My marriage in the beginning was just okay also. Shortly after our wedding vows were exchanged my husband changed into an individual I didn't know. (we lived together 7 years prior to marriage...so 7 years were very good filled with love, passion, and caring). During our courtship he would shower me with expensive jewerly, accessories, cruises, ect. I was his trophy. I am many years younger, slim and very attractive. We had wonderful steamy sex, great conversations, and were truly in love. Slowly sex became less passionate and less frequent, conversations were one-way, and slowly he became mean and hateful yelling and cussing at me. He was distant, cold, aggressive and nasty. Was this part of his disease 15 years ago? Perhap it was the FTD (frontal temporal dementia) which was slowly kicking in. I don't know, but what I do know was that the man I loved so very much was no longer. Yes, he has a disease, but can I excuse all his behavior on the disease?
My heart goes out to you...as I can truly relate what it's like to suffer as a caretaker caring for a spouse who never really appreciated you. I don't judge you...and no one here will. You have done nothing wrong. You are a victim of a self-center man who now has a crippling disease called Alzheimers. Will you stay the course out of duty and commitment? Will I stay the course though this?....Mim, I don't know. I am surviving only a day at a time...hour by hour...and sometimes minutes upon minutes. I question why haven't divorced my husband after recently learning of his infideliess with prostitutes. Whatever you do just remember you need to do what is healthy and best for you. Recently I started a discussion on this board titled "emotionally divorced" which many members wrote how they have emotionally divorced their spouses. You may benefit from reading this as many have posted their sincere feelings as they are travelling down this deep, dark journey.
Remember...when you have no one to turn to....and need a shoulder to cry on...a place to vent...or a place to learn you can safety come to this site and someone will always be here.
I was happy to marry my husband; we were a fairly good match at first though not passionate. He was faithful but his Attention Deficit issues made him not very attentive. Then I went through a long process of healing from childhood trauma, in which he supported me. But I was changing and growing, and he was very clear that he was happy the way he was and had no interest in changing or growing. We reached empty nest and nothing changed. I was ready to threaten divorce when he was diagnosed. There is so much I wish I had pushed him for earlier.
Mim, you have been open and honest about your relationship with your DH and as you can see by the other posts, there are many of us who wish our relationship with our spouse had been different. I also felt my DH was different once we married -- he seemed to have time for me when we were dating, but once we married, the job and children (his two from the previous marriage) became the priority. I always felt the burden was on me to improve our marriage and keep it going, because he didn't feel there were any problems. As far as he was concerned, he was being the provider (and an excellent one) and there was nothing more he was obligated to do. It almost felt like a business relationship in a sense. I used to joke that I stayed in it for the money and the travel, which was partially true.
I think if more of us were able to share the responsibilities of caregiving with another, we would probably be able to keep the anger and resentment at a minimum. This is a rough journey for all of us, and remember, you are not alone. We'll get through it somehow and hopefully, we'll be better people because of it.
Mim. When I read your post, it could have been written by me. I too have spent many years with a lot of anger and resentment at his condition. My marriage also was less than I had hoped but I stayed because of commitment to the marriage and kids. We got caught up in raising a large family and by the time the kids were up and out of the house, there really was nothing left between us. He then got sick and I spent the 5 years before his diagnosis with Alz taking care of him, in and out of hospitals and multiple surgeries. I have come to understand that I believe my anger and resentment is all part of my personal grieving process. Everyone grieves differently and I think my anger is covering a lot of saddness and dissappointment of what could have been.
I am now waiting for the assisted living to call that they have a room. I have decided to place my husband. I know it will not be great with him placed--only different. I want so much to get on with my life and try to salvage what is left of it. I am determined that this horrible disease will not kill me along with him. I believe he needs more care than I can give him although I know he may go downhill after placement. One of the professionals told me that familiarity with the home sometimes hides symptoms. I do believe that true Right now I am doing a lot of praying and I have wonderful friends (including one male) who has been wonderful. I try to focus on my blessings. I know that his behavior has not been as bad as many that have posted and for that I am grateful but time to place him so he can get the coordinated medical care that I am unable to provide. My best to you.
Wow - i'm reading through these comments with tears in my eyes. After writing, I thought I had been too harsh about hubby(which I tend to do too easily) - afraid I'd made him sound like a monster, which he is not. But as I read the comments, you all are - well - ME! I feel that he has been emotionally neglectful, withdrawn & now it's more so - at least at this point. There was a point in our marriage when I lost respect for him as a man, when I felt he failed to step up to the plate & do what he needed to do for his family (we have two children - well, men!). He became weak in my eyes & I apparently have not been able to get past that. As I look back, maybe there really was something going on even then, I'll never really know. I guess it's difficult for me to separate the man from the disease - it's like he just continues to disappoint me, but intellectually, I know he's not trying to disappoint me. Emotionally, well, that's another story! Oddly enough,as one other posted, he never really knew that I was unhappy, disappointed, etc. Either he never paid attention or I'm a really good actress!! I tend to think it's the former! I will check back - thank you all so much. I tend to not log on if things are going fairly well - probably shouldn't do that, huh? :)
A PS to my previous comment - as I re-read everything again, maybe I just had expectations that were too high (although I didn't think so at the time). Maybe it's my generation, born in 1941, grew up during the 40's & 50's, really did have kind of a "happy days" childhood (not perfect, but good). Maybe I had (still have) the idea of Prince Charming sweeping in on his white charger to sweep me off my feet. Probably not the most realistic way to look at things, but that's the way it was. Sometimes reality stinks!!
I've been going through something similar. It really is hard when you still love them (and sometimes they show their love for you, which makes it worse) and then they are so mean and nasty. I'm am being told all of the time that I am changing and not the same person, that I act like I don't love him, that we would have such a good relationship if I would act like I used to, and (the best of all) if we sold our house and moved to a little town where no one knew us that it would be like the old times and we wouldn't fight and argue any more. (I would have to leave my home and grandchildren, etc.) Although DH is not diagonised, I'm sure it is FTD and with FTD they don't see that they have a problem. It is always someone else's problem.
I need to add more to this very old discussion. Right now, I am an emotional wreck. It is so hard to let the hateful words "slide off of your back." the hardest part for me, I think, is hearing about every bad thing that I have done and how I am doing it all on purpose to kill DH. He tells me that I know stress is killing him and that I am doing it on purpose. Sure, I have done some past stuff that I am not proud of. But nothing so major that I deserve this treatment. At what point do we finally break from this load.
For those of you who don't know me, DH "probably" has FTP behavior type. The doctor told me when I described his symptoms four years ago that it sounds like FTD and it used to be called Picks. The MRIs at that time didn't show anything. He just doesn't comprehend or ever appreciate my feelings. He is very self-centered and directs any angry feelings toward me.
I have no one to unload on, so thank you all for being here to listen. I feel a little better now. Thanks!
Mary, my husband also has FTD with the behavioral variant. For years at home when anything did not go well in his world it was my fault. Meanness and abuse became the new normal. You are correct, they have no insight. When I tried to speak with my husband about the changes I noticed, he said I was making it all up because in am an RN.
He was taken by police off the little island we lived on over three years ago now. He has lived in two facilities which ended up not being able manage his aggression. Throughout that whole time he considered himself a supervisor in the facilities and always called me when things did not go well because I was the cause. The number of times I said, "You are clearly very upset and I am sorry I can't help you. I am going to hang up now. I love you and will talk with you later." Then I didn't answer for a bit. I lost track of the number of times I took the ferry to visit him and he wouldn't speak with me because he was upset about something that had gone on.
Other times when things were calm he was glad to see me. His behaviours are like turning on a light switch and I never knew and still don't know what to expect.
Now he is back in hospital as they try to adjust meds yet again to decrease the delusions and paranoia that cause the aggression. His disease has progressed enough that he is now not able to use a phone to call and to blame me for things and vent his anger.
Indeed, "At what point do we finally break from this load?" We don't deserve the treatment we get secondary to the disease and it is inherent in it. It broke me for sure.
Judging our own marriages is a difficult task. Maybe judging is the wrong word, because it's not a contest. My wife and I will soon have our 47th anniversary. We've loved each other, but our love is unique; it's not like anyone else's. My wife was a hard worker, a great parent who taught me how to be a better parent. Did we always see eye to eye? Of course not. After 20 years of marriage we separated for about 6 months. Neither of us was right or wrong, we just had a lapse of communication. We, together, decided to stay together. Not always bliss, but a mutual respect, a desire to be there for the other; I guess I can call it love. Now, I am married to a different person. Sure, there are glimpses of my wife, but the anger, the pent up frustration, the total disorientation is the disease, not my wife. I need to remind myself that she has a perception of these anger producing conditions and her perception is her reality. It need not be mine, but I must respect hers. But at what cost? The emotional toll becomes cumulative until I want to scream. I want her gone! I want it to end! That's my emotion. It passes and gets replaced with guilt for having thought those thoughts. I owe her allegiance. She deserves all the care I can provide. She's relatively happy at home. The meanness then creeps into the picture again. She reminds me of my mother-in-law in her last days. When her acerbic tongue lashed anyone with the perspicacity to sit with her. These traits are a part of who we are. Who we will become. Who we will tolerate. She deserves my love. I deserve my sanity. She needs me. I need me. Others do this every day. It's just my turn. I'm up at bat in the top of the ninth inning.
Hi gawker, my marriage sounds a little like yours--not a bed of roses. About the time we could have had a life his health started to go and then 5 years after that the dementia. I placed my husband because of the emotional toll it was taking on me. A lot of people place them because of the physical toll but at the time he was still able to do a lot for,himself. I did not like the person I was becoming---constant anger and frustration, no patience, blaming him and tons and tons of guilt. I was at the end of my emotional rope. I knew I needed space for myself or I would not make it. It is true they become different people and then we end up trying to,care for a total stranger. I hope you are able to get a break from caregiving once in a while. I took my husband to the local senior center for a while and I would drop him off and he would eat lunch and socialize. Many people take them to adult daycare which is good again because it gives you a break. I know one thing I learned in my support group and also from people here to do things sooner rather than later so they have time to adjust to,the new schedule. Yes you need to respect her perception but not to the point that it destroys you. Change is difficult for dementia patients and the longer you wait the more difficult it will be. Many people start with having a caregiver come in a couple days a week to just spend time with the patient. That will give you a break to do something that you want to do. If you do not think she will accept another person, then you tell her something like you are just having someone in to help you with the chores etc. she will eventually adjust. Also if you have a local Alzheimer's office near you check them out. You can go in and talk with someone and they can provide free resources for you. God bless
Gawker, from the comments you've posted on this and other threads I get the sense that you're pretty much a left brain person, and yet most of the responses you've gotten thus far are from right brain folks, bless their hearts. My son accuses me of having two left brains, so let me give you a problem solving response rather than an emotional one. Early on as a member of this AD Spouse forum I took to heart something that a member named Starling had posted to the effect that those who survive this AD caregiving journey best seem to be those who are able to think in terms of a life "after", and I think that was my salvation. I guess I'm pretty good at compartmentalizing things, which allowed me to place the unpleasantness and drudgery of caregiving in one compartment, and then once my DW was safely in bed and asleep I was able to move into the other compartment and continue something of a life as an individual separate and apart from the caregiver role. You might profit from trying to find (it used to be available online) an Alzheimer Caregiver's Playbook written by Coach Frank Broyles, former football coach at Arkansas for many years. He made some good points about "needing to take care of the quarterback" (that's you) as a critical element in caregiving for the spouse, and I think I was able to think in terms of his football metaphors in attempting to put the present loss (impending) behind me and start planning for the next game (my after). Fortunately for me my DW never exhibited the anger and bad behaviors that you and others mention, and also fortunately for both of us we were able to enjoy about fifteen wonderful years following my retirement at age 60 before AD began intruding into our lives. I was able to keep her home, the last few months under Hospice care, until her death six years ago -- just days short of our 60th wedding anniversary. Thereafter I pretty quickly placed Plan B into operation to begin my "after" -- I remarried, which hasn't all been a bed of roses, but certainly better than wallowing endlessly in grief and self pity.