Today was a bad day...I don't know how to give a cyber scream but if I did I would...can you hear it? I use to be able to direct my DH whenever he wanted to do anything that he shouldn't but now I can't. I am going to have to get a caregiver to stay with him from now on when I buy groceries. He is using toothpaste to wash his face and insisting on making a mess of his room to the point that there is no place to walk. We live in an apartment and it isn't very big. Everywhere I look there is a mess. Here a mess, there a mess, everywhere a big mess. I know that I shouldn't get upset with him but I sometimes can't help it. I reread the blog about throwing in the towel and sometimes I feel like doing that. Someone who doesn't deal with dementia personally himself told me that I am very loyal. Most people wouldn't put up with the things that I am putting up with, they would have left. I do not want to leave but I also don't want to stay, I wish things were different but they aren't. I am ranting now but I don't have anyone else to talk to about it. I am not even sure I know what to think or feel anymore. I am alone but married, I don't feel married or single. What am I? I am lonely and afraid and I have physical problems of my own and my DH isn't even well enough to care. He can't even remember what I say to him and doesn't even act like he cares. I wasn't made to handle this but for some reason I am doing it. I am not doing a very good job of it either. Thanks for being here, it is 1:30 in the morning and I don't even want to get off of this chair because I know that when the sun comes up I have to do this all over again, and again, and again.

Each stage seems worse than the previous one. When you think you've got it down pat the rules change again. All too soon they get to the last stage and physically it is easier. Unfortunatly by then you may have lost yourself. You just about have to give up the fight and admit it is what it is-and you can't change it. I am so sorry for those of you going through it.

I know how you are feeling, I think everyone on this site does. I think because this is a gradual process, we reach points along the way, where we feel that we need to give up. I have no help with my DW the kids are too self invovled to help out, plus they live 30 miles away. I think we face the limit of our ability to cope many times along the way. Each time a new day gives us hope of being able to cope. I think the process teaches us how much we deal with change. Each of us have a limit, and each of us are in different situations. I hope that you will have a good day soon and things will ease up for you.

Deb, thank you for sharing your state of mind with us. We all cycle through these emotions and feelings on a very regular basis. Last weekend, I had a major panic attack when an outing with my ALZ husband and ALZ mom went wackily, scarily, awry. Serious, heart-pounding, self questioning, bereft, alone, inconsolable, wondering if I can continue to care for them and work , FEELINGS. I had to chalk it all up to the fact that Alzheimer's "won" that day. There used to be a saying "sometimes you eat the bear and sometimes the bear eats you......"
Peace and hugs to you. You WILL cycle around to an emotional better place. Let us know when that happens and we will all share in your strength.

Deb, as you've read, you are not alone. I'm so tired of having to guess what hb is saying, picking up clean clothes he puts in the laundry, cooking food he says he wants then won't eat. I keep telling myself if he'd ever really cared about me--except for what I could do for him--that he were a soul mate, the love of my life, it might be easier. But I've resented him for a very long time. I know it's going to get worse before better. There is no day care here or I'd take him 2-3 days a week. If we had one, I'd still have my job.

So how's that for cheering us up? NOT I've read Coping with Alzheimer's, but so far I've not been able to act on it very effectively. My best hope/help comes from reading about spouses here who've coped, endured and are positive role models for me.

Hugs to you while you cycle to a better day!

This is more a practical suggestion (rather than empathetic support) but maybe it's something that's available in your area and would help. We live in a town with a high ratio of seniors so one of the grocery chains instituted a phone-in shopping service years ago. It actually began because an older woman knew several other seniors who couldn't get out to grocery shop very easily. She approached the grocery chain with the idea of beginning a shopping service. Because of the popularity of the service, several other grocery stores also offer the same service now (although the original chain offers the best service). People phone in their grocery order and volunteers are organized to do the actual shopping and the groceries are delivered to the person's home and payment is made at that time. There is a small delivery fee (much more affordable than taking a taxi to go grocery shopping or hiring someone to stay with one's LO etc). I realize grocery shopping can be an outing for the caregiver but one could alternate actual grocery shopping with the shopping service. Plus using a shopping service (for buying groceries) might free up time and money for the caregiver to get out for some R&R time that is a lot more refreshing than getting out to buy groceries ie attend a concert / go out for lunch with a friend or relative / go to the recreation center or library etc. Worth checking around to see if it's available in your area or not. Interestingly enough, new moms really like this service too (during the first few weeks of having a new babe in the house). Mothers also use it when there's sickness in the house and it's hard to get away to the grocery store.
I can leave my hubby on his own okay although he doesn't like me being away too long or too often during the week. I think he is early stages FTD. Sometimes I find it hard to juggle errands and get back in time to have lunch with DH. It feels a lot like a kindergarten year----when one had to schedule appointments and other errands within that tight window of either morning or afternoon class times. Hubby is much more settled and is less anxious if I am home at mealtimes. Right now I don't need to use the grocery shopping service but I'm sure glad to know it's available for the future.

Hear, hear,Bama! You are doing a terrific job and I don't know how you do it. Don't ever doubt yourself. You are one grande lady and an excellent caregiver - aches and pains notwithstanding. Love you.

Bama & all: I am 80, it will soon be 8 yrs since I lost my DH, I was younger, but no chicken. Yes, your 'get up & go' - 'got up & went,' --tell me about it--but you keep on. I always knew I was strong, but being a CG for AD all but put me in an institution. I don't have to tell anyone here what it does to one and it sometimes seems that the harder we try the worse it gets. I can offer you all the platitudes about taking care of yourself and clever little tricks to get your LO to do this or not that, to prepare for this or that but I want to reinforce your feeling a little bit better about yourself. You know, for all of us, there is always someone younger, prettier, stronger, smarter, and on & on. Some are better CG's, but you have chosen to do what you do--and it is a choice--I've known people who walk away. Sure, I was caring, but there were times when I screamed, pushed and said things I wish I could take back. I defy any normal person to say that they were a perfect CG 24/7/365. That you are weary and frustrated, I'm sure, but I don't doubt your caring. If you could compare yourself on a scale with other CG's, I think you'd score very well. Remember, when the best you can do is the best you can do, then the best you can do is enough. Oh, and what I said about not telling you to take care of yourself--take care of yourself!

Carosi, You are always an inspiration to us. Life has handed you a lemon and you have made lemonade. You make us better caretakers when you post. Love you..

Deb, I've been there, as everyone else here has. There are nights when my stomach just churns at the thought of doing this maybe for the rest of my life, and I'm already 71! So, how many years are left? We can't possibly know. I had a panic attack last week when my husband asked me a question on the same topic for about the 20th time that night. I usually don't mind this, but I had had a very busy day and had just gotten into my bed to watch a favorite TV show and somehow I couldn't get the answer out! I simply couldn't speak and was unable to answer him. This is about the fourth panic attack I've had. That night something else happened with him and he said something really hurtful to me. I sobbed harder than I have in a very long time. I couldn't stop. Some people say it's good to get that out, but I don't like to do it because it usually doesn't make me feel better, it makes me feel depressed. But, the next day things were a little brighter and I handled things quite well.

So, we all, in our way, have the feelings you have. I wonder myself if I'll make it. Some days are hard, some days seem much easier. But, you know, even after all I go through, I love him and I will do anything I can to help him. I think you'll find a way, too.

Bev, I feel the same way you do. All the things that I go through to take care of him I love him and want to do anything to make the rest of his life as easy as I can and I know that if I had to do it all over again I would. Bettyhere, I already take something for panic attacks but I don't think it is working. Does Xanax make you droggy? I couldn't handle that , there is to much to pay attention to without being worried about being alert. I know that medication affects people differently but how does it affect you?

Thank you for this discussion. I don't have much to add to what's already been said, but I'm getting so much out of reading this. I'm only 41 and have had health issues myself for 22 years. So, most of my adult life has been sort of "small" and limited as it is. I'm grieving a lot lately, not only about slowly losing my spouse, but also, thanks to my increasing CG role, slowly losing the little bit of MY life I'd had to begin with.

Bluedaze... I am almost a child. LOL But, my spouse is 64. Between our same sex marriage and our age difference, we're the first to admit we're "The Odd Couple." Our friends would agree. ;o)

I think that is very interesting about the high blood pressure and how it affects the medication taken and visa versa because narcotic pain medication like percocet affects me strangely and I only take 1 or 2 at the most a day and the dosage is up to 4 times a day. I have high blood pressure and I have noticed that I am more sensitive to meds than I use to be. That's not good! BLN, I am grieving too, I can tell. I hate to feel this way but I think it is a normal process and I don't think it is going to go away soon.

I just wrote in another thread about grief and its effects. Funny we should be talking about this now, when I'm really feeling it. It's been seven months since our diagnosis and I guess I'm just now feeling it.

Deb, I read where your husband was diagnosed with FTD. So was mine, although I believe they're really not entirely sure what kind of dementia it is, but he's showing more symptoms of FTD. What I notice while reading the threads is that there is less memory loss with FTD. My husband, on the other hand, is losing his memory fast. He's even having difficulty remembering the names of people close to us. My question: Is your husband having memory loss?

I just re-read my words above. It's actually 19 months since my husband's diagnosis, not 7 months.

JeanetteB, I think you're right. If it really is FTD I can recall things he did that were way out of character for him. I never thought about dementia. It's true that he did lose his judgment and powers of reasoning first. It's really only in the last 7 or 8 months that the memory part of it has been showing up, and it seems to be showing up with a vengeance. I thought the memory loss would disappear slowly but it seems to be disappearing rather fast. Is this the way it happened with your husband.

Deb, How did you feel when your husband began showing those behaviors? I must admit we went through some pretty rough times, as they would show up when we were on weekend trips, occurring at the slightest provocation, whether by me or others. Sometimes the way he acted caused great embarrassment for me. I just couldn't understand why he let such little things get to him. Now, of course, I know why. Sometimes I would just walk away, to get away, as he let his feelings be known. I was mortified. Oh, how I wish I had known then the reasons for his behavior. I think I know why so many people here have such young spouses who are going through the devastation of FTD, etc. We would have been among them.

Do not forget that there can be a combo of FTD/AD and LBD/AD. From all I have read it is not uncommon for AD to be showing in the later half of the disease. So many unknowns make it very frustrating.

Over the years, in my research I've come across mixed dementia. AD & VaD, for instance can both exist in the same patient. It's well beyond my ability to understand it all, I just know that it's there. You can search 'mixed dementias' and there's a lot about it.

It's so good to know I can get answers to my questions so quickly here. I'm rather scared that because he had those symptoms of FTD beginning at least 5 years ago and now has the memory loss that it might mean a later stage than I originally thought. The thing is, he can take care of his needs as far as dressing, bathing, etc., thank God, but with so many other symptoms occurring so long ago, maybe this stage is going to be shorter. It scares me to think of it. When I read how patient JeannetteB is with hre spouse, I wonder if I'll be able to be that way. I truly try. Sometimes I make it, sometimes I don't. But, at least I know I have somewhere to go for help with these feelings and to help me understand what my husband is going through as well. I am VERY patient with him when he asks his questions over and over, but when he talks to me with such hate when he is having one of his bad days, that's the time I think I might not be able to do it because it's so hurtful. I know it's the disease talking, not him, but it hurts just the same, and it's so difficult to change my mood to match his. Anyway, thanks so much all of you for your help.

Hey, we can only do what we can do. We all lose it from time to time (and always regret it when that happens), but we are only able to do so much. When my wife was teaching, she'd sometimes have a headache in the evening due to stress ... even on her best days. She referred to that as 'background stress" meaning that although not even aware of it, even on her good days that stress was always there. Well, I think we spouses ALL experience that daily background stress EVERY day, even on those days that are really good days for us and our spouses. Given daily stress that never goes away ... just stress that is worse on some days as opposed to others ... I think we're bound to 'lose it' from time to time no matter how hard we try.