I'm the wife of an alz. spouse. I've been reading with great interest all the posts here. A lot in common. But, I haven't really seen anyone that's really ready to implode under the stress of it all. Seems everyone has a great base of friends, family that's willing to pitch right in, support groups to steady them, spouses doing well on meds. I don't have friends. None. Neither does my husband....never has. Those whom I call my friends are so busy with their own lives, very active with their sport as I was until last year (training, showing hunter/jumpers)and they just don't have time. I do have a couple of neighbors who would help me when I need it. Our marriage has always been rocky. I'm 53, he's 78. He's never been fiscally responsible (and they money was never any of my business), always full of accusations, history of betraying my closest secrets I've confided, just a lot of junk. I should have left 20 years ago ( i know the exact moment it should have taken place). So, there's quite a bit of mess in this relationship that we're never going to be able to face. I've always been a "Pollyanna"....things are always gonna get better, just keep the course. Needless to say, I've been faithful to my wedding vows. But now, I live so alone. There's no conversation. No tenderness. No touches, except when I need to bathe and groome him. Lately I've fallen into a deep depression . I don't get up exept to feed the animals, water the stock, I'd rather squat on the floor than stand up. I can't eat. I don't want to do anything for him. I can't drive because I go off the road, like a blackout, and find myself in the median of a major interstate. John was a very active, brilliant Ob-Gyn. I don't understand whats happened.. no. I just know that I'm ready to fly away. If I could I would chuck all this and take the cash and start a new life. WHERE ARE HIS CHILDREN AND SISTERS THAT SHOULD COME TO HEEELP MEEE!? I'm seeing a councellor that suggests I should be hospitalized for a while until I stabilize. I need other health care myself. I need someone to just bring me a cup of tea. I need someone to rub my neck....my head hurts all the time and I can't stop crying. No wonder no one wants to be here. I'm ready to take my own life, but I feel too much of a responsibility to my youngest daughter and to my parents who are still alive. And then, there's THAT. My parents are my husbands age and their health is fragile. I know what will happen. I fear I'll loose my father and mother and be alone here waiting to loose John. I'm a very weak person and probably hateful, but this is a discussion board with no bare faces .... a place where I felt I could bear my heart. The wind is whistling through some kink in the window sash beside me and it sounds as cold and empty as this place inside me. Sorry I have no sense of humor anymore.
I have a feeling that if things are that bad then life-saving measures for yourself are probably in order. Not that I would be able to make specific suggestions, but choices that may seem too drastic now may be what you actually need.
(Can someone suggest where you seek this type of info--Eldercare attorney, or something?)
But it may be that you actually do need to escape this in some way, whether that be making arrangements so that your husband can begin to live in assisted-living, for example. Obviously if you're really sinking then you're not helping anyone, so don't think you're obligated to keep doing what you're doing.
Welcome to my website. It sounds to me as if you need to listen to the advice of the flight attendants - "Give yourself the oxygen first." Right now, you need help to save yourself. I would suggest you call the Alzheimer's Association (1-800-272-3900); Elder Services in your area; your doctor; - anyone who can help get your husband into residential respite care while you get your own mental and physical health in order.
Call the Alzheimer's Association first, but BE SPECIFIC - tell them you need a PLACE FOR RESPITE FOR YOUR HUSBAND so you can get the emotional help you need.
You and your AD spouse are each only a couple years older than my DH and I. Almost the same age gap. The circumstance of becoming a caregiving, stay at home wife, watching the days tick by~~ knowing one day we'll be left behind, having NO retirement set up for ourselves, and wondering if when we finally do get "Out of here" if we will have a chance to still live a life. I've got teens who are losing one more day of their childhood everyday, and by time they finally get "out of here (this AD home life)" they won't be sitting there still as kids, waiting for me to come around, thank them for being patient and resume my role as their Mom, running them around to do the things teens do. The kids outlet is going to school, and they do have friends.....but I don't. Same thing. Paul wasn't social, but thinks he was. I don't have friends because he always felt wives shouldn't need to be out and socializing if they have a good husband at home. Just want you to know I understand the isolation, and the frustration. Basically, we hit our twilight a couple decades early than most of our counterparts, although there are many, many here who have a young spouse with AD, and even younger kids at home. AD just plain sucks no matter whose life it strikes.
New Realm.....thank you and the others for the comments I've recieved so far. I participated several months ago on the alzheimers.org message board sites, then fell away. I believe you are fortunate (and unfortunate, for the kid's sakes) to have children at home. Happy sounds, foot falls, conversation, telephone ringing, doorbell chiming? Places to go. Routine. I never made any friends. When John and I married, he asked me to forsake my friends (mostly other young single mothers in my neighborhood). He said we would make our own friends, friends that we both had something in common with. He was protective of his "professional" face, I think. My friends, contacts, had to be 'approved' of, so to speak. Church friends were okay. Physician's wives Auxillory was okay. (booooooooring...yawn). I now understand that John seemed like a very stable, self-assured person but I know now that he has suffered from low self-esteem and bi-polar disorder. Any associations he made were with people like....yard and stable help, the auto mechanics, (those people were usually younger and couldn't help calling us DR. and MRS.) Of course he was social with his office staff and other doctors, but never brought anyone close to himself. No real friends. Acquaintances. Casual golf buddies, enough to make the foursome, you know. Anyhow, I've been so without close friends (I'd love to call someone my 'girlfriend'!!) to share with that I really think I don't know how. I'm afraid of reaching out on the phone or going anywhere to meet an acquaintance for lunch right now because I break so easily. Really, I just see a couple together having a good time and I come apart. How fun is THAT to be with???? Then, there's the really big issue that you mentioned........and I wonder how many others think about it....I worry about when will this be over? Will I still have something left to offer anyone? I wanted a life-partner, didn't you? Though, honestly, considering my husband's past, I believe he thought I'd never stay. His history had been if you're not happy, change the spouse (I'm #3), change the practice, change your state of address. I stayed through all that...now almost 24 years. So, no anchors. I fear I'll be too old or run-down to have a partner again. Sorry, but I really am one of those persons that wants touches and tenderness, to share interests, build things with, ride with, talk with, have a history with. I feel like I'm just waiting to have to move on again. I've lived on my farm, StoneCrop, for almost 5 years now, put all of ME into it and this is as long as I've lived ANYWHERE. I just need to talk everything out here, feeling desperate. So, forgive me. Also, maybe the advice I've recieved about putting John into someone else's care for a while would be what I should do so I can get myself well. I'm undergoing detox from narcotic use, too, so I'm really a mess. I'm just so embarrassed by how the family may view this. Mostly they don't see what's wrong. The kids nearby do....John's sisters think I'm making it all up. "There's nothing wrong with John at all....he's just depressed". I feel like a monster out of control. God, if I had no care for anyone else, I'd open a femoral artery. Crazy. Will this get better? Thank you for listening.
I'm 47 and DH is 71. I understand the resentments over the past. There was a time when I actually did start divorce proceedings. And I sometimes ask myself where I'd be today if I'd followed through. But, he went to rehab for his alcohol abuse, and became a nicer, happier guy to be around, and I felt that being sober now he deserved a chance to make amends. Oh, I'm one up on ya. I'm #4. We've been together just over 20 years, married almost 19.
If you have time, there are a couple of older threads you might want to look at here. You can use the search and find them. One has to do with when Alzheimer's strikes an already unhappy marriage. And another thread, one Joan did a Blog topic on as well, is called the Emotional Divorce.
That's pretty much where alot of us are. It doesn't mean necessarily one spouse no longer loves the other. But the relationship has changed forever. Happy, and even bad memories, and years and years of history are no longer shared. We're not divorced in the legal sense, but we are in so many other ways. Some spouses have had to be placed (mine not far enough along to go without a fight), but we still feel the legal and moral sense of obligation to care for them. One thing that I think you should really make your MANTRA is this:
"I have a moral obligation to assure my loved one is taken care of. That doesn't mean I have to be the one delivering the care."
Even though my DH is home with us I know there is a strong possibility he would have to be placed. OR, I'll have to bring in help somehow. I keep telling myself that. I don't know your DH's stage in the disease, but as I said above, mine isn't yet to a point where I could place him. One thing that does get me through, is to actually dream/fantasize/plan things about my future. Taking road trips "ALONE." Just me and the road. Then taking road trips with friends~if I can find any. Making new friends, making changes around the house that DH has always objected to, or otherwise interfered with. Picking up my purse and going to the store on a whim. Cuz whenever I think of doing something as simple as mailing a letter I almost become depressed. Hardly can have a normal thought of running an errand without having to dread taking him along, or making sure someone else is in the house with him. I want to be able to say "Yes" without even thinking when my sister is coming to town and wants to visit, or shop, or have lunch with me. Or go to an event somewhere. I have to tell myself over and over, that this can't go on forever. I just don't know how long. I struggle to remind myself that I'll have a life when this is over.
The only part of AD that will get better is "How I deal with it."
I truly believe family members who think you make this up are either ignorant, in denial, or both. You are needing to continue with your detox, and take care of your own emotional self. Those family members would change their minds real quick if you were to ask them to either stay with him, or have him in their homes for a few days or weeks.
New Realm, Your way of copeing with this illness is so much like mine. I too want to be able to say yes without thinking when asked by my sisters to go out. My sisters are the ones who have helped me so much, we go out, but yes, we have to drag and tug dear Jim along. I took for granted being able to just pick up and go to the store. I guess that is what I miss so much right now. Things I took for granted, others enjoying their retirement years and I have lost so many years of my own life. I feel so bad feeling this way because dear Jim cannot help what has happened to him. I will be here for him, will love him always but that does not mean that I do not miss being able to live my life. We only have one life and I would like to have a few years to enjoy mine.
To StuntGirl, I am NOT a medical professional. But I AM a person who checked myself into our local psychiatric hospital 13 years ago when I found myself in a situation I could not deal with. I couldn't eat. I was too weak to go out for a walk. I cried 24/7. Going into the hospital was the best decision I ever made. I didn't need much counseling. The psychiatric staff knew what my situation was and there was no way out at the time. All they could do was to give me some medicines to try to pull me out of my abyss. I was in the hospital only four days. I urge you to do as Joan suggested. You HAVE to take care of yourself. You don't necessarily have to enter into a hospital but do something to change the emphasis to yourself, not your husband. And I would suggest that, as soon as you can, take a trip to somewhere sunny.
Dear Bebe, thank you for your comment. I long to get out of here. Honestly, gravity seems to literally pull me back to the ground (and I'm only 120# and pretty fit). It's hard to stand up and seems pointless to try and accomplish anything worthwhile. I thought today I would try hard to balance my bank account, pay some bills, organize around the kitchen....but what would I do with my husband????? He really shouldn't be here by himself although he believes he's fine. I've been told not to leave him alone. He's very feeble. The average person, in talking with him for 20 min. or so, would think he's just fine. I have no link to any agencies here. It's just me up here. In years past when I needed help with my children, traveling, etc, I would ask my parents to come up to help. They were glad to. But, now, I'm afraid they're too frail to travel and do anything here to help me in this situation. I think I'm loosing my mind.
Stuntgirl, Take Joan's advice today, not tomorrow and call alz.org for HELP. Sure there is help in your area w/ alz. agency. You need to stress to them YOU NEED TO GET YOURSELF TOGETHER and can they help w/ you not leaving him alone. Girl, you deserve and need a break today and not just McDonalds. Your house and ck book can wait unless it is theraputic to you. We are here for you and wish we could have a cup of coffee w/ you. We want to help you but can only do it w/ words. I will use my words now to pray that you will be surrounded with GOD"S LOVE while you are reaching out for help and pray that HE will guide you to getting help for yourself. YOU ARE VERY MUCH DESERVING A GOOD LIFE. LOTS of HUGS from all of us who knows how hard it is and struggles daily.
StuntGirl, How about paying someone to check on him a couple times a day and just get out of there for a respite. Or maybe hire someone to paint your kitchen and put in new cabinets and tell your husband you just need a break while it's going on. What's the worse thing that could happen--he could fall and break a hip, or he could set a fire. Those things are just temporary compared to your sanity. But first, please call the national Alzheimer's group and/or your county's department for the aging. I'm sure you aren't the only person living in a rural area (where I gather you live) who has needed help like this. There are also church groups that would love to help even if you aren't religious or a member. Keep in touch with us. We care.
bebe, pat.....thank you so much. I wish I had someone real to face over coffee or tea, (a beer, a glass of vino, a glass of water) and talk with. Yes, I will do as you suggest. In the past, the red tape seems just too much. I don't have weeks or months to wait for help. I don't have the finances to cover the cost of self-pay. Am I missing something? Thanks again. Especially about the words about God's love. I've begun to believe that he thinks this is a very funny joke. I can't hear him anymore. And I do actually go out into my barn (where no one will think I'm insane) and scream for him to look down and help me. I'll keep asking. Thanks again. Keep praying for me, please. Sorry I seem so needy.
You should call the 24/7 Alz Assoc. line and have them give you the number of the chapter nearest to you. Your local chapter may be able to inform you of possibly more additional services in your nearest community. 800-272-3900. Its a free call of course, and it may be very fruitful. Sometimes there are things around, things available that we've never heard of.
Hello StuntGirl, I'd love to have a cup of coffee with you and be your friend.Hope you do as you said you would and seek help soon as possible.You really are in my thoughts and prayers.Please keep us posted.
I was almost where you are at now , emotionally,a year ago. I too live in a rural area with the closest alzheimer meeting an hour away the nearest neighbor two miles away and no family to help. I finally called husbands daughter who lives across the country and she agreed to have him visit for two weeks. I managed to get him on a direct flight and he visited for two weeks. I think I just slept for the most part of two days, then finally I was able to get my self together. I think those two weeks saved my sanity. Can you call his family and insist that he visit with them? You desperately need time to rest and collect your thoughts.
Stuntgirl, You are so loved and you will get thru this. We will not quit praying for you. And no I don't think GOD feels this terrible AD journey we are on is a joke. But I think he smiles down knowing this too shall pass and saying " TRUST IN ME AND I WILL DIRECT YOUR PATH" as the Bible says. I know what you mean about not hearing him, I face this and get so frustrated but I know HE is trying to comfort me but I let all this turmoil block my view of trusting Him and Him alone. So I go to the gospel of JOHN in my bible and find HIS abundant Love for us. Girl, HE will not leave us or forsake us, His Word says it. We need to just continue to cry out to JESUS and HE will help us.
Bear with me I am definitely on your side. I saw you wrote about detox from narcotics. I am an alcoholic who hasn't drank in three years. I'm 60 and had a VERY BAD drinking problem. I quit drinking just a few months after my wife was diagnosed and I didn't do it for that reason. The booze was killing me physically, but more important emotionally and spiritually. I had lost all sense of who I was and why I was even on this earth. I hated myself and I couldn't even feel love for anyone around me because "they didn't understand". Most people who have a drug problem also have an alcohol problem....I am not prusuming you are in that category. No matter, I truely understand how beating an addiction at the same time you are battling a new crisis in your life seems almost impossible. My heart goes out to you and I feel like I can almost feel your pain. In my case, Alcoholic's Anonymous has become my lifeline to sanity and has totally turned my life around after almost 40 years of drinking. I have found a God who I thought had deserted me or had put me on earth to endure pain and emotional instability for some reason that only He would understand. I figure I have two great challanges ahead of me. One to stay sober with dignity and serenity, and the other to meet the challanges of AD without going nuts. For me personally I need two support groups to cope with life...AA and Alzheimer's resources. I also know that I have run into a lot of people in AA who had both addictions and by far get more out of the AA 12 step program than the NA program. If you want to talk with me about any of this I would be glad to share my email with you. I hope I haven't offended you and maybe I assumed too much, but I truely care.
Like some others have said please take care of yourself first.There may be no instant fix but there is a way to "match calamity with serenity" if you continue to reach out for help like you are doing here.
Dear Larry M.....Thank you so much for your missive. I know this is a very personal subject, fraught with shame and embarrasment (for me). My son took his own life at 21 eleven years ago. He was a heroin addict and alchoholic under treatment. My youngest daughter seems to have conquered her own heroin and other choice drug addictions and is doing well, but I worry about the alcohol in her life. I participate in an extreme sport (according to my family) and several years ago I suffered a pretty bad 'train wreck' while fox hunting. Had to be helicoptered out of middle of nowhere and woke up at UVA (in the same room Christopher Reeve occuppied, actually!) several days later screaming inside an MRI. Crushed my left chest, small tear in my aorta, broke my neck and back, scapula, collarbone, shoulder, and have sustained some kind of injury to my spinal cord that causes wierd pain and burning. THAT's where the narcotics addiction started. The doctors just want to help you...give you more and more. I ended up with a Fentanyl and Morphine addiction that has been with me for six years. Various other drugs as well, but that's my favored. I'd actually put two Fentanyl patches on at a time, (the old one and a new one) and get into the hottub...it just took me away. And because of the way you use the drug, every three days, I could depend on feeling just wonderful for a full 24 hours. No, alcohol has never been a problem for me. I thought it may have been a few years ago.......think drugs took its place. Now though, I notice when I try to enjoy a glass of wine, I really don't like it, don't finish it, and can really feel the effects whereas I never could before. A history of drug and alcohol abuse in various areas of my own family. I've been told that Fentanyl addiction is ten times more addictive than heroin and takes longer to detox from. My daughter thinks I would benefit from an NA or AA program. Right now, I'm just trying to make the effort to get up every day. I can hardly wait until it gets twilight so I can go back to bed. I do feel better today, though, body-wise. The strange electrical vibrations under my skin (one of those withdrawal things) have pretty much gone but my head is still splitting. Doc's given me something (promises it won't hurt me) to stop the twitching and jerky movements. Pretty much cold-turkey. (I'd tried going off the narcotics using the Methadone program, but that too is a dangerous drug (just cheap) and then you're left with a Methadone problem. What a time to choose to do this. I had no idea it would impact me so emotionally. The mood is ugly. I don't want to take care of myself, much less my spouse. I want to send him to a sister of his while I get better here. I have several options. He doesn't understand what I'm going through. Tried to explain again last evening...he asked me to start using again if it's so hard. AAAARG. *sigh* I don't know what anyone else's experience is, but sometimes we get into these heated arguments....I say mean things, he can't remember any of the stuff I'm talking about and denies everything, thinks HE's fine....I'm the wrong one. Wierdly, he never remembers after an hour or two that we've had this confrontation. That's my one blessing. We never talk anymore...the conversation just seems insane, it goes in circles. We can't watch a movie or tv together because he can't keep his mind on the story. He does read lately. Mostly sits or lies in bed. That's what has been getting to me. There's so much to do here. Small farm, large animals, fence lines to keep clear, I have a working studio where I sculpt (hopefully, that will be my financial savior, God bless my hands). I think I must be a whiner. There are so many others here that have it so much worse than I .... younger people with children at home and an AD spouse. I can't imagine. Fortunately my children are away by now. Thanks for your words. I, too, want so badly to meet the challenges I face with dignity and serenity. I want to be a whole person again like I once was. I want to feel some self-assurance which has been missing for over a year. I'm like a deer in headlights and it all takes me by surprise. How long have you been dealing with AD??? I know everyones experience is different. My husband seems like he's stage 4 or 5? I don't know. It's getting hard for him to move around in our home and this is NOT a handicap accessable place to be. I worry he'll get hurt and he knows that that is when he'll move on to an assisted care environment. Are you at home with your loved one? I mean, have you stopped working (fortunate enough to have retired young) to be the caregiver? Thanks again. StuntGirl
My wife was diagnosed 4 years ago but there were noticeable signs at least a year prior. Karen is still home with me and we are still able to do things but I have to really help her with most activities. If we are going out I pick out her clothes, fix her hair, etc. She just doesn't seem to pay attention to her appearance like she used to. I've even learned how to give her a perm and cut and color her hair....actually I think it's kind of fun and I think I do a better job than the beauty shops. When I'm done she can pretty much just wet her hair and comb it out and look pretty good. I have to remind her to take showers, take her meds, I cook, shop, and when I clean house she helps??,,,if you know what I mean. She is very pretty and sweet but starting to get kind of childlike and that has ruined any romance. I miss that a lot. She is definitely stage 4 and throw in some stage 5 stuff and that is where we are. It is very depressing right now and I am on a mission to not let this disease destroy my life along with Karen's. We are going to Puerto Vallarta in April for a week and that means lots of planning for me and a certain mindset. We only travel by ourselves now because it drives me nuts to be around other people who don't understand that our pace is based on what Karen can do, not on what everyone else wants to do. Based on what some people are going through and have gone through I guess I'm doing pretty well even though it doesn't seem that way sometimes.
I'm glad you shared what you did. Now I know a little more about you. I will pray for you and ask God to give you the strength and courage to get through the tough times you are experiencing. You are pretty young and there is still life ahead to be lived. With God's help you will survive all this. I hope you get at least a little relief from some of your load pretty quickly...Keep asking for help and then don't be afraid to accept it.
Stuntgirl, Believe me, I know what it feels like to think that death for me was the best option. That put me in the ER for four days. It was a living hell - they did not have any beds in the hospital, so staying in the ER was the only choice. There was noise, bright lights, constant "excitement" and for me it was like a vacation. I finally felt I could just "relax" and look forward to someone waiting on me - even tho it was awful hopital food. The doctor - psychiatrist - that took care of me, took charge and told me and my husband what we needed to do. She arranged for him to be out of the house for several weeks so I could go home and get on my feet. I had a friend come stay with me for a few days. It was the worst time and also the best time because I learned that I do have a breaking point. I never knew that before. So, now, I have learned where and when to stop using my energy and what to do when I can't take it anymore. All of our situations are different on these boards, and I offer my little "advice" as the best I have. I do care about you and will stand in the gap and pray for you and your family. Please find a way to get help for yourself. I reached a point where my decision making was not productive but I couldn't see it. I have called the Alzheimers' help number - it is on their website at times and they were very patient, listened and gave some good advice on what to do. Just having someone validate my situation helped me get through the day. Nothing was different after I talked to the help line, but I was able to catch my breath and carry on. God bless,
Faith&Hope....more confirmation on what I need to do. I am going to begin making arrangements in the morning. I'm at the point where I'm throwing things (not to worry, soft stuff) and hurling cruel words at my spouse for things I never got to talk to him in the past. And he's always been one those righteous christians that's also a regular S.O.B. Parents will probably come to see me at the end of the week so I can do what I need to.