I have not had a good day. My DH didn't do anything that he doesn't normally do. " Gimmie this Gimmie that" When I try to tell him something he gives me a stare. Or he says "What!" Before I even finish what I am going to say. He would never talk to me at all unless I try to talk to him. I resent not having a husband anymore, I have a big empty life and all I do is take care of his needs. I don't exist anymore except to do for him. I know I am not suppose to feel this way. None of it is his fault but I am not perfect I can't do all the things that I have to do with a smile on my face and a song in my heart and even if I do it for a few days it feels fake. Do you know what I mean? I guess I am venting. I have a long ways to go still with this disease and I already feel like I am petering out. No one but you can understand anything that I am saying, even my friends don't have a clue. I know that I am saying boo hoo for me right now but I think I need to do this in order to cope. You know what I mean. Right before I was typing this I thought "Oh No what would happen if I blew up at him and he doesn't wake up the next morning" I would really feel terrible! I hate feeling this way. I love my DH but I don't feel like he can return the love anymore. I was reading about wedding anniversaries on here and how they are not going to be able to celebrate the same way that they use to and that he probably wouldn't even know the difference anyway. It made me very sad because we are going to have our first Anniversary since the diagnosis in a little over 2 weeks. From now on things are going to be so different.
Know what you mean about anniversaries deb. Our tenth was April 8, and he forgot it completely. It is sad, but unfortunately, par for the course. Let it out here, it does make you feel better just to get the thoughts out of your head & in some other direction. There is no way you are "supposed" to feel. It is o.k. to feel what you feel.
Our anniversary is tomorrow. We got a card in the mail yesterday, which he read, said it was nice, but didn't seem to connect to the event. Earlier I had asked him what month we were married in and he didn't know.
"I have a big empty life and all I do is take care of his needs" I think many of us have days we feel exactly like this...Although we all have different life experiences, we have come to a place where we all have one thing in common. Taking care of some ones needs has become our primary focus.. And even when we want to do it well .... it hurts.... My husband was always an introvert who liked solitary pursuits like fishing, etc. Rather than let it be a problem for us, early on in our marriage I decided that I needed to pursue my own interests. Since his retirement five years ago from the working world slowly I have had to let all of my activities go. I must work outside the home and so I am either at work or at home with him.
I consider it fortunate that I have a job and can still be part of the regular world but nevertheless, there is rarely a moment when I am not thinking about what I need to do for him and to keep him safe.I am not the same active person I once was.
Like you, my emotions include love and respect, but also resentment and sometimes anger. I don't think there is anyway we are "supposed to feel" . Our life is what it is and I think we need to give ourselves permission to feel what we want.
And yes, I think it does help to voice our feelings,sort of air them out, and hopefully be able to move on... to the next thing that needs to be done.
I don't think there is anything easy or natural about having to face this disease and the fact that so many do it so well and with such grace is truly amazing.
0deb you didn't blow anything. While your husband's actions aren't his fault they aren't your fault either. Your life will never be the same and you have lost all your dreams. Don't you just hate those commercials showing a beautiful white haired couple jumping from a boat onto the sands of a secluded beach and walking to the lovely cabana?
deb I made a list on another thread about things I miss. When I went back to read it it sounded very selfish because it was all about me. Sometimes I think we feel we are disappearing along with spouse we are taking care of. You just vented feelings that we all share at times.
This is why we are here. This is the purpose of this website. We spouses can pour out our inner most feelings to one another, and we all understand. I don't think there is one of us at one time or another who hasn't felt or will feel in the future what you have expressed. We each cope with it in different ways, but the feelings are there, they are real, and they deserve to be validated.
Deb being forced to put our own wants and needs on the backburner makes us angry and resentful. the continual thought of living a large part of our own lives caring for someone who is ungrateful or non responsive in return is a huge disappoinment in itself. just the thought this disease can last years is also on our minds. its one thing for a sporadic episode of caregiving when someone is ill with a temporary sickness that can be fixt but with this one we know we are in for long term misery and profound loss along the way. it makes for short tempers and constant stress. dont think that those of us who are before you; years into caregiving; havent been where you are now. the only methodical thinking that comes from all this is that we do become more tolerant and forgiving along the way and somehow find ways to adjust to all we are losing - but its a constant battle. hugs hope your day is better, divvi
I'm not trying to be funny here, but if there was one reason for polygamy, it would be this disease. There would be others right there to help care for the ill one and provide support to each other, something that we lack in our current situations. We are alone in this struggle, and have to survive in whatever way we can.
Joe, I suspect that as more and more of the boomer generation are faced with this, that we are going to see "families of choice," of friends who are facing the same problems deciding to live together so that the work and caretaking can be shared.
There is already the "co-housing" movement, where people have their own apartments but all meet for dinner every night, and they take turns who cooks dinner for everyone. I don't think it's going to be a huge step to have "co-housing" groups where people who are caretaking live together and share many more duties than just cooking dinner. What it is going to take is some sort of charismatic person who starts one successful such home, and then is able to make it go nationwide.
Tell me -- if you could move to a place where some of your online friends were living, dealing with the same type of situation, wouldn't you do that if you could?
Deb, you just stole all my words and thoughts! How did you manage to sneak into my mind without me seeing you?
Bluedaze <Don't you just hate those commercials showing a beautiful white haired couple jumping from a boat onto the sands of a secluded beach and walking to the lovely cabana? > I have an overwhelming urge to throw tomatoes at them!
Absolutely, Shanteuse, I believe I suggested that kind of thing somewhere, like being in a place that was sort of resort-like, but with medical capabilities inside or nearby. For me, that would mitigate the help and loneliness problems to some extent anyway, if not totally.
"know what I mean?" ABSOLUTELY! You are not alone--you are perfectly normal--whatever that is. I've been thinking what you said for the last couple of days. Talk about resentment--I feel really crappy that I have these thoughts. We have had a heat wave in the beautiful Pacific NW. Reached 103 on Wednesday and almost the same on Thursday. (Much cooler today.)
On Thursday, I'm sweating and absolutely miserable. My friend, got a room in a hotel here in town with A/C. She called up and said I'll come and get you. You guys can enjoy the A/C and our neat pool. I SO wanted to go. Asked Dh if he wnted to go. He said "sure."
So, I got my swimming suit, my water shoies out, my nice beach towel all packed up and his stuff waiting for her to arrive. When he said, "Ya know. I really don't want to go.Let's just stay here."
Talk about disappointed, angry, fed up. I asked him to please let's go. He said "NO! I don't want to go and you can't make me." Well, ya know. I couldn't so I called her cell phone and explained the situation. She uttered a four-letter expletive and asked "Why does ist always have to be about him?" Good question.
Guess what he got for dinner that night. Nothing fancy I'll tell you.
So, Deb. You aren't alone. We all are human and have our foibles. I'm so glad you told us what happened. This is the ONLY place I can go and talk it out. I don't know what I'd do if I didn't have this place.
Would I move into a place with some privacy and some gathering together. Yes I would. By the way those places exist. They are called assisted living. But a co-op assisted living situation would certainly be more affordable.
That's the idea. A co-op situation, where people KNOW that they are expected to help take care of other people's ill partner, in return for being helped themselves, and where there is not a large (expensive) professional staff. Assisted living is great but not everyone can afford a situation like that. A friend of mine in his late 80's had been the sole caregiver for his wife (vascular dementia) in their building, which did have some capabilities for help. But, everyone pretty much stayed in their own apartments and if he needed help he had to hire someone. Knowing that you can ask your neighbor to watch your LO for a little while, and that THEY UNDERSTOOD THE SITUATION, is the difference. He has had to place her, very much against his will (all of us are SO relieved that she is now getting better care than he could give), but I bet he could have kept her home longer if he had had the support of others.
And, very few other people in that building were dealing with the same situation. I'm talking about a place where dementia caregiving would be the norm.
Thank you everyone for your responses. Today is not that different of a day but when I logged on here and read all your comments I felt like I had an army backing me up. I know that things are not going to get any better and I am trying to adjust. Bluedaze, I do hate that commercial with a passion. I can't stand any of those commercials. Even before my DH's diagnosis he was not able to have sex and we tried those pills and they wouldn't work at all. I felt like yelling at the television and telling them that you are giving some people false hope because they don't work. Any commerical that has a man and a woman on it that are being intimate I can't look at. It kind of makes me feel like a teenager again but I kind of blush and have to change the channel because it hurts to much. That is dumb!
Mawzy, I'm so sorry you weren't able to take advantage of that offer. I've seen on tv about you heat wave. O get annoyed because my DH wants to go every where with me but I guess it's sure better than what happened to you.
Talk about blowing it, I sure did last night. No problems last night until bedtime, everything was going smooth until I ask my husband to put his wallet in his chest of drawers for the night...if he sleeps with it his pocket, he will search for it in the middle of the night numerous times, poking me with his elbows or whatever, looking for his wallet...which means no sleep for me. After asking, begging, pleading & anything else I could think of, I told him I was just going to the other bedroom to sleep. He went into a tizzy, finally, lost it myself, told him he was driving me crazy & when I went to the psych ward, he would be going to the Nursing Home, said, some other things that I am not proud of, but what is really bothering me is that I am not sorry. I feel strange that I am not sorry I said what I did.
Oh, Kadee, it must have been good to let that fly for once and I find that it helps to clear the air and sometimes even has a good effect. How is he this morning? This morning we were taking our (guest) dog for a walk and dh got mad at me (can't remember why) and yelled at me to keep on walking, I didn't have to come home any more, he didn't want me in the house and never wanted to see me again. He's shouted this many times before and I usually just reassure him in as kind a voice as I can muster that I'm not leaving, but today it struck me as so funny (he couldn't survive a day without me) that I couldn't help it, I laughed out loud. He went on ahead home still angry but a few minutes after I got back he was as sweet as can be, asking me if i wanted some juice and what time we were leaving for a bike ride we had planned earlier, etc. At some level he must be terrified that I might desert him, so I should not laugh. I know. But you know what? Not really sorry, today.
I'm not sorry either that I lost my temper yesterday when DH started another rant about the parking. This morning he said we should just park like we always do!!!!!!! When we got home from church there were two parking places empty, the first slot and the handicap slot. Guess which one I took.lol.
thank goodness they dont remember it if you do have a meltdown and tell them how you feel! its like a pressure cooker, building steam then blows off occasionally or pops the lid! ha. i remember telling my DH too if i couldnt take care of him he would have to go to a NH. a bad threat i guess but its a viable one we all know that. jean i just know how miserable this makes you this parking thing he has. obsessions are strange and they can pick the quirkiest ones, but quite annoying never the less! hugs to all of you enduring these obsessive behaviours. not fun. divvi
Thanks divvi. I think I am more angry than miserable because we went through this the week before last and I thought he finally understood there is no reserved parking. He said he understood and as far as I was concerned that was the end of it. NOT!
There is something to be said for the memory thing when we can lose it, vent, get it out, and they either really don't recall it or choose not to. I have found that when this happens (more frequently than it should) it is as though a large balloon finally burst and normalacy (what's that?) can return until the next time. I am not feeling as guilty about it as I used to either.
Yesterday, we walked up to the store. I took my little blue grocery cart, my oxygen cannister, wallet, bottle of water and away we went. He kept going too fast and I was having a very hard time keeping up. So I asked him to slow down. To which he replied, "My gosh, how slow do you want me to go?"
Anyway, we got to the store, picked up our groceries, loaded the little blue cart and started home. My oxygen cnnister was in the cart and the cannula was out. I had it around my ears and in my nose. He grabbed the cart and started off down the hill. I yelled at him to stop. I ended up having to remove the cannula. (Can't you just picture two old people dukin' it out in the parking lot?) He got very angry with me and said he was tired of me telling him how fast to walk, etc. He was getting pretty aggitated. I said through clenched teeth that he should calm down because with my face all bruised up from that fall, someone would call a police man and get after him. He stared at me and said he didn't think so, but he did slow down.
He forgot the entire incident before we got home 20 minutes later. It's sometimes a real blessing, isn't it.
I just checked in. I hate to say this, but I am glad others don't think I am terrible for not feeling bad because I lost it. And you are all right, he doesn't remember anything about last night. So far today has been gentle as a lamb. I did tell him a fib this morning that he needed to change his bedtime t-shirt because it had something on it. Also, since his leg had been hurting he should stay home while I went to the store, I needed to just be alone for awhile. However, did have a nice surprise in the toilet when I came home. Oh well! I guess we will need to do some paper work next time he has to pee.
After reading so many of you dear peoples' stories of coping all day and night with the stress of your DHs and all that goes with it..believe me, I have been through it for several years until he was placed in a NH nine months ago and no one knows what living with someone with dementia is really like unless you experience it as we all have and do. I am wondering if you have an adult day care center to have them spend most of the day there to give you some freedom and relief. It was a tremendous help, and my DH thoroughly enjoyed it and the programs offered were varied, arts and crafts, music, quizzes, much more. It went well until the incontinance occurred and he refused to wear Depends. Churches should offer this as well. My heart goes out to you.
Well, he would have to be WILLING to go to the day care. There's nothing wrong with him, why should he go? I don't think he would fall for the fib about volunteering, either. Maybe later, he's not ready yet. He wants to go bicycling (WITH ME) all day. Since they don't do that at day care he certainly won't go. I am planning to look into it soon, though, so I know what the possibilities are in my area when the time comes.
I've read these thoughts before, but everytime someone mentions "blowing it," I'm comforted that I'm not alone. My hb isn't yet so far down the slope as many of your spouses are, but still I get impatient and reach a boiling point. If we'd had a better marriage would it be easier? Don't know. One of my biggest "issues" is that he saved NOTHING for retirement and wasted $ throughout our marriage. I didn't have a say in things then, but I certainly do now. Many's the time in the past I thought of leaving; it's too late now. Hope God's sense of humor doesn't include my payback time:)
Zibby many of us question the quality of our marriages. It is just not possible to differentiate bad behavior from the onset of dementia-especially with FTD.
I can't say that he was "willing" to go to a day care center. It was a matter of just stopping in and seeing what they were doing and meeting some of the people there,and just easing into it...stay for a lunch. If anyone would ever object to this it would have been my DH. Then it was just leaving for an hour of so..it worked, and believe me, I was kind of shocked. He came to love being there and looked forward to it. The victims of this horrible disease somehow feel a comaradie with each other. Believe me, I NEVER thought he would! You cannot ask them, or you will surely get a "no way" response. Just use a tactful and easy approach.
Zibby, I did leave a few years ago but we reconciled after several months and then I began to understand there was a medical reason for his turning into an SOB. Unfortunately the damage had already been done over many years of ever-increasing abusive behavior and now I care for him out of a sense of duty and because I know he would do the same for me. Personally, I think it makes the caregiver burden doubly difficult. I have to make myself not daydream about where I would be and what I'd be doing if only I had not fallen for his reconciliation promises.
Methinks my problem is I don't know when to quit: stayed too long in first marriage because of babies, stayed too long in second marriage because of ignorance, and am keeping myself in the caregiver business too long because of a multitude of reasons...
Deb I wrote this back in May, I think I was feeling just like you.
DON'T DIE
DISEASE SUCKS THE LIFE OUT OF LIFE. IT TAKES AWAY ALL YOU CHERISHED MOST FRIENDS GET TIRED OF THE DEPRESSED . CHILDREN MOVE AWAY TO FORGET. THOSE CHERISHED MOST IN YOUR LIFE BECOME ABSENT. THEY DON'T KNOW WHAT TO DO, WHAT TO SAY, SO THEY SAY NOTHING THERE'S ENOUGH CRAP IN EVERYONES DAY, WHO NEEDS MORE. DAYS ARE SILENT, NIGHTS ARE RESTLESS, A LOVED ONE SLIPS AWAY, YOU CONTINUE TO SAY THE LONG GOODBYE. ALONE, NO DINNERS OUT, NO VISITS, NO FRIENDS. ANYONE FOR COFFEE, NO, SOMEONES DYING. WE ARE SHRINKING, ONLY THE DOCTOR SEES US, WE ARE BECOMING INVISIBLE. TAKE PILLS, DRINK WINE, WALK, ROCK, WRAP YOURSELVES AROUND EACH OTHER, AND CRY. WE ARE ALONE, AS WE DIE. ONE SITS AND WATCHES THE OTHER SLEEP, SLIP AWAY DAY BY DAY. HELP GET WASHED, HELP GET PILLS, HELP WALK, HELP GET DRESSED. COMB HAIR KISS FOREHEAD, HOW NICE IT WOULD BE FOR MY FOREHEAD TO BE KISSED, FOR MY HAIR TO BE BRUSHED, FOR A WORD OF LOVE, OF SUPPORT FOR SOMEONE, ANYONE, NOT TO BE AFRAID TO ASK HOW ARE YOU? DO YOU NEED TO TALK. FOR NOW I'LL BE SILENT UNTIL I SCREAM TO THE STARS TO HIT ME AGAIN, I CAN TAKE IT. I'M A CAREGIVER.
I hope this makes you feel more "normal" like the rest of us. After a week of respite last winter, I asked Jim for a separation and marriage counseling. He was in the hospital AGAIN for Depression and Suicidal Plans. I was so scared of coming home with Dylan someday and finding him dead. I did not understand what was going on. Then he became very ill, this caused a decline in his mental status and I had my worst fears confirmed, it wasn't the marriage that was the problem, it was FTD. We never did separate.
I just posted comments in Joan's entry about losing it. All I want is a good night's sleep and his delusional thinking about an ever-repeating non-problem reared its ugly head. I thought I handled his total memory loss about today being our 6th anniversary pretty well. He read greeting cards we got over the last few days and didn't make the connection. I was so sweet and understanding that frankly, it just wore me out. When this other thing came up I told him I just couldn't listen to this crap again.