I want to be able to LOVE my dh but by the end of the day I find myself resenting him instead. I know that sounds mean and hateful-but there is nothing about our lives now that even resembles how we were before this d--- disease. As we near our 45 ann(10-22) I just want to go BACK-back to the days when he looked at me it was with love and caring instead of just someone to care for his every need.I know he can not help it but dang it neither can I !! I want to laugh and spend time with the man I love-not shave-bath-feed -dress and wipe the butt of a man I no longer know. I am and have been trying so hard to adjust to this new way of life-but I just keep banging my head against the wall. Sorry---it has been another LONG day!!!!
bluedaze* it is a nightmare that I pray each night that I will wake and find it all a very bad dream.And lots of nights I just pray that I never wake up again.Then I have to say sorry GOD,don't take me until you take him.Because I worry what would become of him then.
I wrote two blogs on resentment. Maybe they will help you by demonstrating how common your feeling is among Alzheimer Spouses. It is not talked about to "outsiders". It is one of the emotions we keep bottled up, but it is there, and it is real.
bak, the resentment is so common for us and the resentment guilt is even more common. Most mornings before I get out of bed(that is when I reluctantly crawl our of bed) I wonder when it is going to be over and the answer is when he is gone. I don't like it but it is true none the less. One day at a time is the only way to handle it.
I'm feeling it too Bak...I thought it was just me, like you I know he can't help it. Yesterday was full on. I'm thinking 7 years they say this goes on for...I don't think I'll last that long. He won't have respite, won't go or have anyone in the house, I miss going to lunch with girlfriends, I know that sounds so selfish as he needs me more. We are coming up to our 50th anniversary..and it's like living with another person that I don't know anymore. Today was better day,
I meant to ask..is it Ok /wise to tell the kids everything he does, I don't want to sound like I'm whinning but it's hard not to say anything..I don't want to burden then with everything or turn them away from him / us.. Our Dd always asks me "how was Dad today"..she is my angel, gives up her day off work drives an hour down and back once a week to be with him while I have a day out
Julia-I tell our daughters most everything that goes on with their Dad,they are the ones that help me with tough decisions.I think they need to know what to expect in case they should have to take care of him for an extended time(rather than the couplle of hours that they do now). They may not always like what they hear but I feel they need too. Is your dh in good health except for the alz.devil? Mine is so it is really hard to see or understand how someone in good health can not know how to go to the bathroom or put his pants on.I know it sounds mean but would probably be easier to understand if they were sick otherwise.
My three kids were supportive but I don't think they really understood how sick their dad was. I remember once a daughter called Bill's facility to ask how he was doing and the idiot on the phone said he was just fine. I had told the kids dad would not last until the week end. He didn't. I once called to ask how he was and the same idiot said he's fine-just walked passed the desk. He was supposed to have been in a locked unit with no access to the desk area. This was in an excellant residence.
I am very upfront with our kids about how their father is. They know I am not exaggerating when they come to visit and wonder how I do it everyday. I also vacillate between wanting him with me forever to praying it will end soon and then feel guilty for hoping. We are all in a quandary.
Bak, just wanted you to know that you are in my thoughts and prayers today. Beautiful sunny day here in the Nashville area. Praying that you have a better day today. Wishing you some of this sunshine :)
I have been thinking about this very subject recently..."How do you stop the resentment?" Is it just because we all are so tired? This morning when I got up, long before my dh will be up, I had these thoughts. Why do I have to feel guilty for hating the situation I am in and who knows how much longer it will go on? Then these thoughts came into my mind. So very strange.
How many of you saw that movie with James Gardner who had his wife in this beautiful home and then there was another movie where the husband had placed his wife and another woman had placed her husband and the two of the them (the well spouses) met at the home and became friends and then lovers? Do you remember these movies?? The spouses that were placed were able to be up and around and had friends at the homes where they were placed and seemed to care less when the well spouses came to visit because their minds were so far gone it seemed to mean very little to them. The placed spouses seemed very content almost happy.
I have talked with others who saw these movies and everyone I talked to about the movies thought they were so good. Just this morning having thought about these two movies many times, I thought, why did these people have to be placed? It seems they could have been cared for at home. They were walking around, etc. The homes looked nice, probably very expensive. When seeing these movies did anyone think ill of the spouses who placed their loved Iones? Did anyone say to themselves why did they do that? I didn't. But, now I am thinking about that. Is part of our stress worrying about what others will think of us if we place our spouses or at least begin to plan placement?
Now, I know many cannot afford placement or really just want to care for their spouses as long as possible. That is fine. But, for those of us that can afford placement and know we can't physically or mentally do some of the things we hear others are doing maybe need to re-think our positions. We shouldn't feel quilty about our positions on this subject...it creates a lot more stress for us and causes the resentment that Joan is talking about.
I just want to be able to get up, get cleaned up and go out and shop..alone. I want to be able to get on a plane and go visit my daughter that lives miles away...alone. I want to take a quilting class..alone. I want to go and sit on the beach and just look at the waves...alone. I want to go to the library and look through books...alone, etc. etc. I don't want to play this game much longer.
I love my dh very much and I care for him the best I can, but I am not going to be resentfully any more, I am going to put myself, my health, my needs in a better place from now on. I am sorry he is ill, but that doesn't mean I have to make myself ill caring for him.
JudithKB, if we had the funds, when my husband got to a very difficult phase,,,(it seems so hard already, ) I would definetely be placing him in a good care facility. This will not likely happen as it seems only the well off or the very poor get help that way.
And YES of course the families and others will resent us, UNLESS they are the ones caregiving full time! In our instance, he is from a native family that really believes in caring at home, HOWEVER!! when we took care of Ma NO ONE wanted her on the weekends, so WE GOT THOSE TWO NIGHTS. She was by then needing changing and bathing and wandered always and you got NO sleep. She was also violent.
She did not know who anyone was, and she would have been so much better in a group situation, imo. We moved over here and she was dead in 6 months from a fall...
Though sadly his sisters do not appreciate me, I am heathen I think, I am taking him over there at the end of November, to stay with them for a few weeks, as I have someone that will be able to watch my home and pets while I am gone.
That is...if they are willing like they say they are. Last time I sent him, about 10 months ago, he was not quite as advanced but the disease was pretty obvious. That is when they told me, yes we see a change but it may be demon possession. I told them they need to call his doctors if they don't believe me.
So I guess I mostly resent platitudes, and uncaring judging people. there are times when I look at dh and feel anger, and disgust at his habits.
JudithKB, I do remember the movie with James Garner (The Notebook, I believe) & I remember that it was discussed here before. I remember how we thought it was unrealistic how when his wife was in the nursing home she was pretty much impeccably dressed with perfect makeup too. Now I’m pretty sure that that is not the norm for AZ patients in a home, but I could be wrong. I totally agree with you about placing your LO when you feel the need. To me it is a very personal decision & you should not let anyone influence you, because that in itself can make you resentful if you are keeping him home longer than you feel you should. I am very blessed that all 4 of my children have already told me that they will be 100% behind me when I feel it is time to place him. Right now he is nowhere near that, but as we all know, that can change in the blink of an eye.
the resentment and guilt is something I deal with everyday. I'm sure most of us do. It seems to never get easier. I don't tell my son everything his Dad does, he knows how bad it it. He is so supportive though, and I feel blessed. He doesn't really need to know his Dad peed all over the wall. I remember when I first came here in Dec '08, I couldn't believe the things folks here were going through. It was going to be different for us. HA! Dilusional, right? I just keep coming back every day to learn from all the wisdom here. Don't beat yourself up Bak, or anyone else. We're all in the same sinking boat.
I just finished a good cry because I came across a letter that I wrote to my husband during one of the times I resented him. I found the letter in one of my desk drawers. He wrote back apologizing for making me so angry. Only if I knew then what I know now. It's not his fault, it's the disease. It's our men in body, but not in mind. I was married for 35 years. I have no more resentment, just a wish that I could have helped him instead of being angry with him. I just thought this might be a little helpful
bak, please don't add quilt to your feelings of resentment! We know how much harder that is to do than to say. We have to take care of ourselves and guilt is going to work against that.
ElaineH At the NH where my husband is, the women and the men are dressed impeccably. The women have makeup on if they so wish. My DH is clean,shaved and his clothing's spotless. My DH resides in a nursing home in Central Florida that has a maximum of 52 patients. He has been there for 9 months and not once have I had any misgivings about his care. Like everyone I had misgivings about placing him, but our children were getting very concerned about my health. I took care of him 24/7 for 3 years and I can honestly say that placing him was the best thing I could have done for him. He is very content there because he is with people like himself. In all truth he is happy while I am miserable, I miss him but I know in my heart I did the right thing.
Bak, I talked to my DD this morning, telling her how i felt about telling her everything..she wants to know, she said she worries about me doing it alone, and wishes she could be her closer to us. One of our boys doesn't want to know we only saw him twice this year, Mother's day and Father's day.. Linda is in agreeance about placement, when the time is right..there's a long waiting list here, and they assess you to see how much one would have to pay for a bond plus 85% of his pension..That's here in Australia. They take so much out of the bond each year and either after five years or the passing of the patient if sooner, what's left is given back! He was an abused child migrant, his mother sent him out here when he was 12 ...he would have to be really bad (not know me)for me to place him, as he would resent me like he has his mother all these years.. This is the most i have opened up ..needed to talk. thank you!
We can't stop the resentment because I think it is part of the whole character of the illness. This is not a pretty disease. It doesn't make the victim or the survivors easier to get along with.
None of us are realizing our dreams or goals. It is as if life has come to a complete stop. I never thought I would be so housebound or catering to someone who doesn't always know me. I can see there is no end in sight. Things will only get worse. The future has no place in my life. I get up in the morning and think "this is as good as it gets." Is that acceptance? Maybe it is just that I am resigning myself to my situation. I can't change a thing, just learn to deal with it.
How easy it is for kids who live far away from the FEBA( forward edge of the battle area a military term for us here at home taking care of the LO with the disease) to merrily go about life with nary a care in the world..Yeah sure they know DD or DM have ALZ and that the well spouse has everything under control so off they go, doing all the wonderful normal things in life...parties, dinners out, trips, you name it. And if some of us voice how it is, we tend to get the " it has to be so hard" and what is not said is " thank God it is not me having to deal with this". They have NO IDEA what we deal with and even when we tell them they don't really grasp it and for the most part most don't want to face up to it. They go on about life, including friends who have dropped us like bad habits, and unless we find people going through this misery in a place like Joan's or make friends in our support group locally, we find ourselves more and more isolated as the disease progresses. For those who have to watch the pennies it is worse yet as we try to hold things together and keep finances under control so we don't end up under a bridge. We are only human and we hope to God we survive this ordeal. There are no guarantees. I am going to put something together to send to each of the girls and I need to be clear headed and not in a resentful mood...but I am going to put out to them just what the conditions are now..as there has been progression in the disease. And I am going to suggest, mainly for the two living overseas, that they start a special saving account for air fare to come see their dad more often WHILE HE KNOWS THEM AND WHILE THEY CAN VISIT WITH HIM BECAUSE HE IS SLEEPING MORE, AND FORGETTING MORE AND HIS HEALTH IS MORE DELICATE ETC....I can't afford air fare for them and it is not my job to provide it for them. Then the ball will be in their court. And after my DH is gone, should I survive this myself, I will not tolerate any comments to the effect " why didn't YOU tell US........" because I could very well come back with " why didn't YOU take more interest in YOUR dad and make him a priority?" I think the resentment bubbles up more often as the road gets bumpier...then maybe subsides some when things level off with that new change....
Today, on a scale from 1 to 10 my resentment level is about a 100 and I am having a really hard time with coming to the conclusion and acceptance that I do not have a life!!!!! How could anyone not want a life!!!!!!!!!!!!!! That is what everyone wants isn't? I guess that means we are not everyone, right?!?!?
I hear you deb42657...I want my life back too.. What a challenge it was to wash the car today...DH just could not work out how the water hose works...a simple task but made so much harder with AL.
We can't control our emotions-only the way we act on them. I think it would take a saint-and maybe not even that- to not resent losing all dreams and hopes.
bluedaze, I agree with you so...to me that means that, for us, the resentment we feel is nothing that we should feel quilty about and don't try to buck it but go with it. Does that make any sense?
I don't think I feel much resentment- only a very, very deep sadness, for all we both have lost. But none of us need feel guilty - we do the best we can and most have given about all we can give.
I feel the same as you Vickie..... I would think the key to still being able to feel the love, is if you do feel resentment.. to aim it at the disease and not our loved ones. They are victims as well, they lose even more than we do.
Yes, Coco, it is heartbreaking when you see the fear in their eyes and face. And DH will sometimes express that he is so sad because he can't do for me what he wants to do. He tells me he loves me several times a day, and will ask if he's told me today!
Although my husband suffered emotionally in earlier stages, at this point he is medicated bigtime and is happy. He doesn't realize what has happened to him, what his fate is, etc. For me, knowing that I am doing the suffering instead of him, because I know what's going on, helps dispell the resentment. If I had been given the choice of him suffering or me, I would have chosen to do it for him. I'm not saying that there isn't tremendous sadness on my part, but I am thankful he doesn't experience it. Does that make any sense?
I don't have resentment, just sadness at what we have lost. Fortunately, my wife is generally easy to take care of. Sometimes I get upset with her, but she doesn't remember. Then we will have a time like yesterday when we were watching TV (Patriots vs. Cowboys). She leaned over and said "I love you". That makes up for all the problems.
Marilyn, not only does you post make perfect sense, you said it beautifully! I think in the earlier stages the resentment is more of an issue because we haven't come to terms with the disease. By late stage, the resentment is replaced by kind compassion. And just as you said, I am just so grateful he isn't suffering any more! That he is content and peaceful, means everything to me.
i think most of us who have had a decent marriage feel this way marilyn. many of us agree that we would take the load to lessen the burden on our spouses if we could. i agree with nikki that as things progress emotions change to compassion due to their total vulnerability and losses.
For 3 days I have thought about this question and for three days I wonder what was wrong with me ........I didn't have resentment. I couldn't resent my husband for having something he didn't control (I just make sure I have a mask with vanilla scents in it to allow me to enter the bathroom), I can't resent a disease I can't control. I can "hate" that disease, I can hate the fact that the government, politicans and the General public do not care about this epidemic or Caregivers. How tired I get of reading about Billion's in unpaid caregiver time. I now feel nothing for those who have left us whether they be family or friends. What I can do is give my husband the dignity and love he deserves from me his wife. Sure we have those rollarcoaster days, sure we argue and I lose my temper, sure I am exhasted from working full time and caring for him. And absolutely none of this is fair. It actually sucks.......but this is my life, he is my love.......I think the worst is ahead of us and I pray I survive.
Nikki, I too love reading about the huge improvement in Lynn's quality of life and the sheer joy it brings you. It warms my heart, I'm so happy for you... and that's good for me too!!!
While we carers need to face the reality of our situations....we spend alot of time under the dark cloud & it's not good for OUR health. Recently Bama said on another thread that she tends to post only when she's feeling positive....I have this tendancy myself, however, I really appreciate the vents because there is such comfort knowing that others feel down as well. Reading about others' struggles opens the doors for those of us who need a little push to let it out. Letting it out hopefully puts us one step closer to dealing with it. So, the door swings both ways.
Your Lynn is one lucky man to have you in his corner.
Hello, bak. I remember your early response to me (flynlow) but now I've had to become ( soolow).
The frankness of your pain is sadly, familiar. I resented my Barb but as time went on I kept reminding myself it was not her fault and as she worsened I began to feel sad all over again for her. Among the many things I've had to learn was this. Our minds are not necessarily our friend. I've had to block out "all" rememberences for now because it's simply too painful and I don't and we all don't need more pain. It took some effort and time to do this but I'll do anything to not think. It hurts too much. Without knowing you I can say with certainty, your losses are hugely painful. Please try not to think of it for it is not good for you at this stage. My resentment eventually gave way to pitty/more sadness.
Dear bak: Soolow here again. I'm new here and all of your caring friends have offered insights that are very real and especially compassionate and caring. I'm going to re-read them again because there is so much here. Best to you for now.
To Coco: I was so suprised to find that we might qualify for county services. We have income. They say, here in Minnesota that they see many people who are not truly poor and their goal is to keep people out of the medical system as much as possible : save the caregiver! I was stunned. Didn't even consider it at first because we have modest income. They somehow separated my wife from me financially to qualify her. Never, have I taken any help from anyone but alas I'm moving on this . . .to save myself.
To all: I've now re-read your words. Wow! Are we not something? So glad we can communicate. I know it helps in ways that others can't.
soolow--If Minnesota is like Michigan, your wife qualifies under her own financial record, and the funds used come from the taxes we have paid in for Social Security, Medicare, Medicaid and in some areas dedicated taxes for Seniors to help them stay in the community. To serve as many as possible some services may be provided on a sliding fee scale. They are not charity. They actually save the States money, helping Seniors stay in their own homes rather than having to cover NH care. Helping the Caregiver is cheaper than paying for fulltime care.
Soolow..I know what you mean about trying to block out the memories, for now, of our past lives and events or trips etc that we took with our LOs who no longer remember any of it....I even get upset when I go outside and remember it was my DH who installed our sidewalk and put up the little store room in the garage etc..and when I say something like " wow you did such a great job when you_______ when we built the house" he will reply " I did that?"...he is often amazed at himself.. There is new emotional pain for all of us around every corner...