Today was just so bad Iwanted to get in the car and go faaaaaaaaaaaaaaarrr away forever. We have been hit here in NO. Calif. by terrible storms and in addition to 24/7 caretaking I am hauling in wood, making fires, trying to keep the animals dry, etc. HB gets up, kinds of dresses, sees I am sleeping in, goes back to bed. Then I get up and like Hildann and Polly, must put every bite before him. He won't eat otherwise. Then goes back to bed until lunch. Repeat procedure. I took a nap and he asked was I sick in bed since I "wasn't moving". Our one remaining teenage son at home helps so much, but he has a job and girlfriend, and that's how it should be. I just get so tired of doing for. Then he wants to eat with me for "companionship" but doesn't say anything to me. He also is very docile, which is also apathetic. If I give him a choice, he always picks the last choice, like the first graders I used to teach. I really feel like a whiner today, especially when I see others' problems seem so much worse. Maybe cabin fever has hit. Like you Emily, I have a horse (and pony) and if it weren't for getting out to them, even in this weather, I would go nuts. I had hoped seeing a therapist and psych. for med. would help me be more kinds, patient, and sweet, but it is just not working. He just sits and sits and sits and sits or "rests" with his head against the bad of the chair. Where is my Ph.D husband whom everyone respected and looked up to? Where is my kids' father who always walked the babies in the night and who was at the soccer and baseball games? I feel like I am losing myself in all of this. It's like molasses or quicksand; it seems impossible to get out. I am sorry if I am whining. It's just been an awful weekend.
catbird, I understand your frustration, you said the same words I have said so often, where is the man I knew, but in all seriousness we need to understand they are SICK. It is so hard to look at them and they look the same but inside the dear brain is dying. Try to understand he cannot help the way he is. I have been able to keep sane and compasionate by putting myself in his place, they are the most helpless of helpless and so sick. We would not say those things if they had cancer or whatever. catbird, I do not say this to make you feel less of a person. You are saying and feeling the same things that I felt and still feel at times, it is normal. Just try to keep these things in mind when you get upset and maybe it will help. It does keep me more calm. Jane
Well, yes...it is more than alone. Alone would be better much of the time, I think. Today Jeff said, "It could be worse, I could have something like brain cancer."
I said, though perhaps I should not have, that if I had to choose one or the other for myself, I'd take the brain cancer.
He seemed to find that a weird response, but it didn't seem to bother him.
Emily, I agree with you about the brain cancer, odd as it may seem. At least with a hideous disease like that, there seems to be a beginning, medical intervention, and finally the realization that the inevitable must be accepted. I have been trying to go through the "stages" of denial, anger, acceptance, etc. for over 6 years, watching as someone's brain is literally disappearing. I think cancer would be quicker and kinder to those left behind. I know, Jane, he is so very sick, and still so sweet and always says "thank you". But he is only a ghost, a visitor in my home now for awhile. We lost his mom to this; she was the sweetest, dearest MIL one could want. So I know all the things that are probably coming. My sincere wish is that his pacemaker would fail before he disintegrates so far that his body is gone and his soul is still hanging on. I don't mean that to sound awful, but being trapped like that would be, to me, like being buried alive. I know that this rain will stop, and the sun will come back out, and I can deal with this, but every so often I just think....how much more for both he and I? Thanks for the kind comments.
My feelings have always been that this disease is like one Big Fat Mean Tease. From the very beginning it has caused havoc. Sometimes I actually pictured this little gnome sitting on DH's head, thumbing his nose at me whenever someone who doesn't see DH everyday would say, "Gee, he seemed fine to me. I didn't notice anything." Or they'd say something I think was intended to make me feel better, like "Gosh, he seems to be doing really well today, is he getting better?" Some people also do not relate to the stress of going through life losing a bit of our loved one everyday. We are also losing a part of OUR life too. That "history" of the two of us. It was our history and he is losing memory of it. Makes you feel like it was all for naught. Sometimes others who aren't living this 24/7 see our lives as similar to a "babysitting job" and see some of their antics as cute. I think they wonder why we spouses can't see the "lighter side" of things. I think that until this awful disease has so severely debilitated our loved ones others don't really recognize that it is a disease. You're all right. I'd prefer that we be dealing with a heart or cancer type illness. Because it is so much more "defined, and rarely do those diseases take the Person before taking the body.
Catbird, I remember describing my husband as a "ghost" of my husband a couple years ago, before he got his diagnosis. It does seem fitting. He's doing a little better now, on meds. For now. I am hoping something physical will take him out before this progresses to the late stages, and I don't feel awful about it! But we'll deal with it as it comes.
New Realm: my dear friend, you have eloquently stated my main agony on why this disease has to be the worst of any of the awful maladies that one can suffer. the seemingly endless time that we have to participate in being intimately involved in suffering with our love as he/she loses their identity and are helpless to stop the progression. The memories that only we retain and can no longer share with our dear one, that terrible day when your husband of 57 years looks at you without recognition, the grief and aloneness which is endless. You are so astute on your last statement...the person is taken before the body which goes against the seemingly natural nature of death.
I agree with all of you. I wish so much that Gord could just go quickly and painlessly from something before he gets too bad. I remember the horror on his face when we would visit his mom. At the time, I would tell him that she was that way because of a stroke....now , of course, I think it must have been Alzheimer's. At least with cancer, you can fight. My sister has been battling ovarian cancer for over 4 years and she has had hope and so have we. With this disease there is no hope. Only fear, loneliness and despair.
Catbird, I also have wished something would come and quickly take Jim. This is not mean, it is compassionate. I would not to live the life he is living and neither would he. Sometimes they say that pneumonia is their friend and now I understand what they mean. Anything that would quickly take them from this horrible existance.
Know that we all have these same feelings that you have, we would not be human if we didn't.
I feel as all of you do. My husband has said so many times that he would not want to live if he could no longer take care of himself. However, he is physically very healthy, has had but one bout of flu in his entire life, eats very healthy foods and is well looked after by me so I think he will live a very long life. Sadly, as the disease progresses they no longer know that they don't want to live. His mom had AD but fortunately for her and us she died of a heart attack before ever having to leave her home for a nursing home. My husband wishes for that too but it's not up to us.
I think most of us would agree with them not living to the end stage of this disease. When my husband could still communicate he would cry and beg someone to kill him and question why he had to live like this. That was hard to listen to...plus he would be so sad...and just kept repeating over and over that he wanted to die. My husband is physically healthy, too....I suppose that is why we are in year 11.
It wasn't until I cried to chaplain at hospital where I work, confessing if you will, that I wished something else would 'happen' to DH before disease got any worse. I told her I felt like demon wife. Evil, sick, mean-heart soul of a devil. I cried and cried. Probably becuase I hadn't cried in, like, two years. Took me awhile to accept that. I guess I wanted to feel evil. Who wishes for death upon their LO? Only horrible person. But, she, a religious person, convinced me otherwise.
She held me and said, no, that what I wanted was compassion. I pray for that everyday, truth be told. He is very sick in other ways. High blood pressure, bad heart, asthma. I pray everyday for two things: a compassionate end, and a life for my son not spent in sadness for what could have been. I am not sorry. I believe in mercy. My DH was/is a good man. Done so many things for so many people. But that man is slipping away.
I ask all the time to God, why did you let this happen to such a good man? Still waiting for answer...
Isn't is odd that many AD pts. are so physically healthy? I wonder if some day they will find a connection between those who get regularly sick with minor things like strep throat, flu, etc. are less likely to get AD? I look at my HB and see someone who is 82 who looks 65, who walks (albeit with a cane), talks sometime making sense, tries to "help" me, and to the average outsider we look like a May-December couple out walking. I keep thinking of that old song that goes "her hair was soft and brown, her eyes were clear and bright.....but she's not there!" I don't know who coined the term "living bereavement" but they were sure right. The continual state of mourning is ever present, but there is no closure yet. No grave to visit, no "death day" to mark, nothing. Just waiting and watching and hoping against hope. At least I have stopped getting excited when we have a little "normal" exchange. I used to get carried away and go on chatting and then realize that he was hopelessly lost. Emily, I think you said you have a horse. Are you able to get out and groom him or ride or anything? I am lucky enough to have my horse here, and just walking out and grooming him for a few minutes or even picking up manure (horse lovers will understand!) is a big tension reliever.
I am so glad that other feel the same way that I do. For a long time I beat myself over the head for having what I thought were awful, mean, unloving wishes.
My DH is 82, he has a bad heart for years. I thought in the beginning he would not live to the last stage. He almost died after a potluck with ham. So to relieve tension I would joke, "When I have had a enough and he gets worse I will give him a ham dinner". I have not let him have ham, but we are almost to the end. Don't count on their health taking them, plan for what may come. I guess if I did give him ham and something happened to him, I might not be able to live with myself. barbarakay
It seems there is never an easy time with this disease. It seems to go from one stage to another with all the special problems of that stage. All are dfferent, but in some respects are the same. My dh has been in a home for three weeks. He did fine the first couple of weeks, but now he is so confused and angry and does not know why he is there. I know I cannot bring him home, but it is so hard to see him in this state of distress. Tomorrow I will talk to his Phsychatrist and try again to get his meds adjusted. He is healthy, but oh so hard to see him live like this. He knew what he was facing and would have like to put an end to it, but could not. Now he does not know what is wrong with him. I guess it is another trial we face, but I am ready for it to be over. Darlene
I don't have a horse. Someone does, but I don't remember who. Horse anyone? : ) But if I did I would find manure mucking very therapeutic, I'm sure! Cleaning up cat barf I'm not so sure about, but that's what I get. "Normal exchanges," conversationally speaking, do occasionally occur here, but just as often I find myself with a thought or discussion that, 5 years ago, I would have brought up with Jeff. And now, instead of starting the discussion I realize that a) he won't get what I'm saying, and b) he won't remember it anyway, so any continuity of conversation will be lost, so sometimes I just don't start conversations because I don't feel like facing that.
Yes, I can understand not starting conversations. Often we eat in silence or I read the paper and he pretends to look at a section. You just never think it will come to not talking to each other I guess. Our 17 year old brings light and life into the house when he comes home and can talk about his day, his job, schoolwork, anything that is relevant to him. It makes me feel normal again for a little bit. Today he was so embarrassed because his dad smelled (needed a shower badly) but he just couldn't tell him. So I got him in the shower and went thru the entire closet and pulled out anything that I thought needed washing. I keep thinking I don't have to get he clothes out, but today was proof that I do. I have started to stay in the bathroom after he shaves and say "Now, you need the deodorant. And here is the toothbrush. Hang your towel where the label says "Scott." I have to do the same at night with doing pjs, etc. I really honestly don't think the loneliness of widowhood would be as bad as this.
I can relate to so much of what you say. I feel as though LO is disappearing a little every day. It's so hard to have a conversation with him lately. Sometimes, I try to talk about the kids or the house or something, only to feel like I'm babbling to myself. I miss him so much. I can't stop remembering how bright and sharp and charismatic he was when I met him. Sometimes I feel like I'm living with a stranger. I'm angry lately, and I feel like I take it out on him too often. I know he can't help it, but when he announces out of the blue that he's lost his wallet, when I wanted to use his debit card to check his bank balance to see if we can pay the mortgage this month, I can't help it. The poor me's set in, as in poor me, why do I have to take over on everything; why do I have to worry about how the bills get paid? He used to pay all the major bills and handle all the finances. Now I have to figure out the check when we go to a restaurant. I feel awful for feeling sorry for myself, but some days I can't help it.
Of course you are angry! Your husband is being replaced with a "boarder" who lives in your house. The real guy you married only visits occasionally now. That was a BIG thing for me to accept. He looks the same, wears the same clothes, the same slippers, likes some of the same things he used to, but he is NOT the same at all. Anger and frustration are part of this whole wicked disease. The blessing in it is that if you do lose your temper he will forget it within 2 minutes. I think joan said that we MUST find something fulfilling within ourselves to do, as our spouse will never be able to be our counterpart again. We have to be our friend, because we have lost our best friend. I hope that makes sense...
I've had pleny of pity parties myself. I'm sure we all have. Sometimes I can't wait for him to go to bed so I can have my pity party. I've been taking care of everything myself for quite awhile now. I don't ask for his help because it is more difficult when he helps. I don't have the patience to come up with things he can do. I too run out of the energy to attempt conversation. I find myself thinking about the term emotional divorce a lot lately. He will always be my husband but he's more like a child now. I will be there to take care of him but to protect myself I find myself emotionally divorcing. I feel quilty about it because my LO would not understand and wouldn't feel the same at all. I miss him too and sometimes I have a hard time remembering how he used to be and why we fell in love 31 years ago.
I just discovered this site after thinking that there must be other people like me--living with a stranger who you somehow still love. I think of who he was and I cry. I think of who I was and I cry. I've been like so many of you, wishing something would come along that could give him the wings to fly to another dimension. My LO was diagnosed with an Alzheimer's-type dementia over 10 years ago. Then about five years ago I thought my horrible, private wish had come true. He was diagnosed with prostate cancer. The treatment just complicated things. Then six months later came a diagnosis of multiple myeloma which is an incurable bone/plasma cancer. And just a month ago we discovered he had a very malignant melanoma. But besides a little fatigue, he still appears healthy and I'm the one sleeping all the time, not getting dressed, not eating. Our friends and our children have been wonderful support but will this nightmare never end!! I am so tired. Our doctor contacted Hospice and they came out today but I just don't feel he is ready yet. Or maybe I'm not ready yet. Thanks for this site.
Bebe...so sorry to hear all that you are dealing with. My husband was diagnosed over 10 years ago and he is still around although with no physical problems....just totally at end stage but has been so for four years.
Take the hospice help...you will be surprised what a wonderful bunch of people they are.
Please keep us posted and lean on us....we understand.
Sandi, I've always heard this disease never lasted over 10 years. I guess that isn't true. How have you survived? I feel I have survived only by hoping that my dear husband would finally succumb to one of his diseases. I couldn't make it if I were you.
Thank you for your encouragement. I know Hospice is wonderful. I actually trained to be a Hospice volunteer and the day I received my certification was the day I found out my LO had multiple myeloma. So I withdrew from Hospice knowing it would take all my strength and compassion to deal with things in my own home. I'm going to try to make it another month and then call them back. They said they can respond immediately.
My husband was under hospice care for 18 months but "graduated"....he quit declining so quickly once he couldn't walk any longer. He has been bed bound for over four years and I think that is what caused his weight to stabilize (one of hospice's criteria for recertifying was continued weight loss). When he couldn't pace 24 hours a day the food he ate finally put some weight on him. You survive just like you have been doing...one day at a time. I, too, wish that something would take my husband so that he didn't have to suffer like he is..but, so far he is still here.
I know some people who have had AD for over twenty years...I am surely hoping we don't break the record.
Heaven help me if it lasts that long. It's only been two years for us and I'm ready for the looney bin now. It really is like some particulary well thought out torture...taking someone you love and watching them slowly change into someone else. My stepdaughter said it's like Invasion of the Body Snatchers, he looks the same from the outside, until he talks.
It's a fine line. I didn't want my husband to leave me, but when he died 4 years ago, I knew it was time for both of us. Dare I say I felt relief for him and for me. After 10 yrs, how many more times can you take it? Besides, our marriage was over years ago. The reasons we wanted to be together no longer existed--even tho we still loved each other. I loved him and I saw in his eyes that he loved me.
I had imagined his funeral so many times that when it actually happened, I went thru it rather lightly. I feared people would think that I didn't care, but I had lost him long ago. He, too, was healthy to the end. Remember to take care of yourselves--and I know that's not always easy--but your well-being is as important as that of your loved one.
Betty, I think when you have been "at it" for so long you do get yourself ready for the inevitable. I know it is hard to imagine them becoming so infirm and pathetic that you wish for something to end this disease, but it happens. After eleven years I have readied myself for him to finally finish dying. His personality was the first to go, his mind then failed him and now he is suffering the ultimate loss of dignity...needing every aspect of his very existence to be taken care of by me. I often tell people that I am taking care of a corpse..a mere shell of a man. But, that being said, I do it with love and respect and appreciate the fact that not everyone gets a chance to honor someone that you love in such a personal and intimate fashion.
Bebe, I don't know what area you are from but if you live in the States, then remember our President Reagan, he had the disease and lasted over 12 years.
Bettyhere, you say your husband passed away but was healthy till the end, what finally took him? did he last into the last stages of Alzheimer?
I cannot imagine going through this for 20 years. We have endured for almost 8 years now and I like most of you feel so alone, I am alone, I have already lost my husband, he is only a body. I can't imagine anything worse than this stupid disease.
Jane: Altho my husband had many moments of violence or bizarre behaviors, they all passed, and he had become very subdued. Days before he died he was still walking and smiled at me but mostly his eyes were closed. He was even eating the day before, letting me know if he wanted more cake or meat.
As you know, the brain controls all of our automatic responses: circulation, digestion, etc. And breathing--his brain simply stopped controlling his breathing. He was given oxygen, but he was never gasping or in any pain. He appeared to be unconscioous. I could have taken him to the hospital, but chose not to. It was all very peaceful, we were blessed. I did not expect it to happen. Over time he had rallied so many times I thought he would again.
What a God send this message board was to me when I found it! Each message seems as though I wrote it. There ARE others who feel as I do. The lonliness- always thinking, "Where Is My Husband?" I identify with everything, from the medication, Risperdal, being a miracle, to being a parent to my husband. Even people saying that my husband seems "fine." (They have only been around him for 15 minutes.) I am 57 and my husband is 61. He was diagnosed 3 years ago. Again, I can identify with each and every discussion- Rosanne
I also am so thankful for this website! It is wonderful to actually go somewhere and feel "sane." This site is the only place filled with people that I can relate to. How great would it be if we could all meet in person to support each other! That being said, I am also so sad that other people are living with this terrible disease!!!! We have all the responsibilities and duties of being married, without any of the benefits. We are all forced to love unconditionally, and it's tough! Some days I feel completely doomed to a life of giving anf giving and giving, without ever having any of my needs met. i have fantasies of meeting a man who can fix things around the house, and who can have great conversations with me. I feel guilty even thinking like this, but it is just a reality for me. Sorry about all the rambling, but I am just really lonely. I am 41 yrs. old, and selfishly feel too young to be dealing with this!!!!!!!!!!!
Please read today's (4/23/08) Blog - The Universal Language of AD spouses. It speaks to exactly what you said in your post. You are not alone in your feelings, and we do understand.
I am 68 and when I found out my DH had Alz I told God "You didn't give me any kids when I was young why are you giving me one now?" I just hope I can handle all that is to come as well as everyone here.
I WAS too young when my previous husband died of cancer, but strong enough to let him die at home. Now I think I will be too OLD to be able to care for my DH as long as I hoped to. This is my favorite husband, too! - even with AD. Life ain't fair, is it?
I was 63 when my husband was diagnosed two years ago. He was a wonderful husband and he has been a sweet little boy. But these one-sided conversations are getting to me. My best friend is locked in his head and can't come out! I'm too young to be dealing with this too! :)
It was my 50th birthday when my husband was diagnosed. He lived for eleven years...the last five locked inside himself because of AD...he was 61 when he died last month. I had been alone for a long, long, time....so, being a widow is not much different than my life before. Sad, isn't it?
Many days I feel like I just can't do this any more on my own. We live in a very rural area and I have no family. I now have a conditional offer to buy on the house so may be we can move this summer.DH's daughter, who lives across the country, has offered to have him come live with her. More and more I'm thinking its the solution. I hadn't planned to be a senior and alone but also had not planned to be a senior and a single mom to my 5year old DH.