This is kind of a vent...OK, it is a VENT!!!!! It doesn't seem fair that the only way that I can deal with my DH 's dementia is to forget that I am here and I have needs and wants and they are not going to be met right now so GET OVER IT(talking to myself) But it is ironic(not funny) that I take care of him best if that is indeed what I do. The only problem with that way of doing things is it is depressing and very irritating. I am no longer a wife, I am a CAREGiver. Don't get me wrong. I want to make sure that my husband has his needs met but at what cost to me? I think sometimes it would be better if I treated myself like I was not his wife but I was a person that took care of him. I don't see how that is possible for me to do though. Do you ever feel the same way or am I doing something wrong? A few hours of respite doesn't seem to be working any more and I don't have the finances right now to put him in a NH or ADC. Even with insurance I am going to have to wait until I start receiving some of his SS when I am 60 years old, that is not for another 7 years. The way things are going with his dementia he might not even be here by then. I am sorry about this vent, it feels like I am not making much sense. I think I need to be on anti-depressants instead of anti-anxiety medication. I see my dr. next month and I am going to let her know then.
Deb, Maybe you should call your doctor and ask about an anti-depressant before you go to see her. She can at least give you a trial amount until your appointment. Take care and hang in!
<<<hug>>> You have every right to vent here. We've all felt the same but for many of us our husbands are older, as are we. You are young and and it makes it sadder that you are losing the best years when you would have done so much together. Hang in there. Anti depressants can help....and when they don't...ask for stronger ones.
deb, I think we have it so hard in our 70's, and yet when we were your age, we were out traveling, going places, doing things and having a great time. You have every right to feel cheated, to vent and no, it's not enough to just have a few hours respite. Do you have family or friends who could help care for him while you have some kind of normal life? Cyber hugs for you.
You have absolutely every right to feel as you do, and I am grateful that I have made this a safe haven for you to vent those feelings. I think we have all, at one time or another, felt exactly as you do. I know I still have days when I want to scream - "What about ME? Don't I count?" It is especially difficult on the younger caregivers, such as yourself. This nightmare started when I was 56. I am now 62. I only hope that it is over before I am too old to enjoy life again. I am sure many of us feel that way, even if we are reluctant to admit it. joang
Tonight I am sitting here wallowing in self pity and wondering if I will ever have a life again. It helps to know that my feelings are shared by so many of you. Yesterday was a very bad day for me and I know I was short with him. As I was putting him to bed last night, I told him I loved him and I was sorry for being such a crab all day. He looked up at me and said,"You will take care of me, won't you?" Somedays I want to scream because it all seems so unfair but by putting one foot in front of the other, I manage to keep going. Lately I've been asking myself, Who will I be when this is all over? Have I lost the "girl" I used to be? Enough said.
Deb you have every right to feel as you do. I am a little older than you are but my DH is much older than I am.I too am at the stage when there should be places to go, adventures to share and because I married someone nearly 20 years my senior and inherited the kids he had custody of, those events were all set aside as funds were needed for their schooling, college etc..his kids are closer to your age..there is only 10 years between me and the oldest.. So now it is all I can do to not feel petty for not wanting to hear all about their great adventures, and trips now their kids are nearly out of college themselves. It isn't that I don't want them to have things to enjoy but damnit those things should have been in my life too and it has been mostly sacrifice for someone else. So while I helped pay for their clothes and education, and DH wanted to take trips to see them and the small fry, now the chances for a cruise, or trips to Alaska or tour Europe are all a fantasy yet they are making plans now for trips to all sorts of places and events. AND I DON'T WANT TO HEAR ABOUT THE MOUNTAINS THEY CLIMB OR THE AMAZING PICTURES THEY TOOK OR THE FOODS THEY TRIED, OR TH AMAZING PEOPLE THEY MEET. I DON'T WANT TO HEAR IT. I TOO AM IN THE "WHAT'S THE USE MODE".
you are certainly not alone in how you feel. Go ahead, color me petty.( what color is petty..some odd shade of green?)
Oh and bevL...at the end of all of this I wonder who if anyone will be there for me when I fall apart..I guess I am a little sensitive at the moment because in our neighborhood there is a group of ladies, some older some my age who get together for coffee and chat..Several know of my situation yet I am never invited to join them I suspect because it is expected that you host this group which can be quite a large group. I am not equipped to do that now..but gee how nice it would be if ...but they don't want to hear about someone with this kind of illness either..I suppose it might make them feel guilty for not coming around now and then just to say hello. So many people who were friends have just walked away...seems they have....I just feel trapped.
Deb42657, How ironic that you started this thread. I have felt the exact same way for the past few days. I guess it doesn’t help that the past few days have been difficult. My DH has been in a mood & I have always let his mood affect my mood. Sometimes I just feel so ALONE. Mimi, I know that I shouldn’t feel envious of people going on trips or enjoying their lives or each other, but it’s hard not to. This isn’t what I expected life to be like at this time (but who of us did?)
I have felt very resentful--I had looked forward to being able to do new things (from an ironman triathlon to a new research project at work) when we reached empty nest, and instead my husband's dementia has been enough to keep me from other projects even though three years later he is still in the stage where people say "he seems fine to me." It has bothered me less recently because I have pick up a new hobby and feel that I do have a place to grow. I do definitely see relate to my husband as a caregiver; I am very happy to have separate bedrooms.
This is a hard one for me. I always looked forward to when the kids were up and out of the house and it would be our time. I had two kids and he had two when we married. Second time around for us both. We still have a soon to be 15 year old DD at home. I will never know a time alone with my DH. What could of been, where we could of gone, what we could of done......And to add to the pain. I had fallen out of love the past several years, all because of this stupid AZ! I still want the best for my DH and do understand that his actions in the past few years were not him. But the pain and hurt are still there and the love has changed so much now. I am only 51 and this just sucks! I have been taking care of children from the time I was 17 and will for how much longer with DH......I may never know me:(
You are all honing in on the cruelest part of this monster of a disease. No one but us can understand how much of life this disease sucks from our total being. When someone's spouse dies from cancer or a heart attack everyone comes to the rescue. When a person dies from a chronic disease folks tend to say-Well-he/she is in a better place. What about us. We slowly died along with them.
Deb....I share your pain as I only see myself as a caregiver, not a spouse. I loved my husband with all my heart and put him on a pedestal. We've been married 44 yrs. and those yrs. have been without any serious problems, BUT!! when we first started dating I began receiving hang-up phone calls from an old girlfriend of his, telling me he was seeing her after he took me home. I confronted him, he said to ignore her and he just wanted to get away from her. The phone calls continued even after we were married and we had our first child, all along him saying if he confronted her she would file harassment charges against him. I came to the conclusion he was probably right and she was just crazy. A couple of yrs. ago I get a phone call from this person saying I wasn't the only one who had children with my husband and they had had an affair while I was pregnant with my first child and they had a daughter. Not only did she blurt this out on the phone and then the oh so familiar hang-up, she put it on classmate.com for everyone to read. As far as I know she is still just crazy and it is a lie, but he can't tell .The problem is, I can hardly stand to look at him, let alone take care of him. He has been nothing but a great husband, never had any marital problems, except this ex high school girlfriend but it's all I think about. Part of me says to ignore her AGAIN and remember we've had a great marriage despite her, but the other part of me is angry because everything that's wrong in my life right now, is his fault! Believe me... I probably need some professional help with all this, it's all on me now, no help from him. I can honestly say, I have no problem thinking of myself as just a caregiver. I've become a bitter old woman at the age of 62 and all the while is is probably another lie, it's just stuck in my head and won't leave. Deb, just one day at a time and we will all get through this, hopefully with our sanity in tact.
I sometimes think it best for me to be committed and let DH have his life of what others see, as normal... We've lost so much with this disease..Pure and simple, we are only caregivers and darn good ones,, There are NO rewards, just more and more critisicm.. Nothing is ever right no matter how hard we try.. Everything is always OUR fault and the verbal abuse makes me cry more than I ever have... He see's this and says I am just TOO sensitive...He vegetates day in and day out and the few things he can still do, he won't and I end up doing that too..Same old story and we've all experienced it.. and YES, I am in the same boat as some of you.. I will have no one to take care of me when I need it... SO, my friends, I am strongly anticipating a life after this is over... New rules, I take time out for myself, I shop til I drop, I do my nails, keep my figure.. yes, that too,and I stay informed thru this site and anything I can get off my trusty computer.. So, my friends, stay connected, do NOT seal yourself off from normal life.. You owe it to yourselves,, so go on and feel guilty,, enough spoiling and we'll get over that. Who knows what the future holds.. I hope one with someone without Dementia... I could not do this again..Thanks for letting me vent.. Now to see if I can do all the things I plan for my future while I get DH thru the present..
Deb--although my dh and I are only 4 yrs apart, I can relate to your post. Like Joan, I started in this role at 56 and am now 62. I had immense frustration at the beginning that my retirement years (I retired early at age 50, in part to take care of my parents) were not going to turn out the way I had expected. I love my husband with my heart and soul, but over the last few years I have done exactly what you said, I think of it as a job. I tell myself that many of the boomers' generation are going to have to continue their work unexpectedly--due to financial need. Somehow, that helps a little (although a "regular" job usually doesn't isolate one from other people and has a big incentive called a paycheck)! Hopefully, those of us who are wrestling with this at younger ages will retain our health and have an "after" to look forward to.
You mentioned that you can't afford an adult day program--but I would say that if you can scrape together funds for even one day a week (around here about $80 for a full day) it would be well worth it for the respite it will give you.
Cricket, so have the phone calls stopped, since you have been caring for him? He can not be cheating if you have been with him. If she wants him so bad as to get you to leave him, and if he is guilty as charged, let her take care of him and go on with your life.
Cricket, this reminds me of my husband's ex-wife, still stalking the hallways of the Care Facility about a month before he died. My conclusion is that she was obsessed, and when I saw her at the funeral, showed definite signs of dementia. Why not let husband off the hook on this one and put it back on her? Even if it were true - and I doubt it- she can't be in her right mind to be phoning you like that. It's as though she were trying to get back at him by hurting you. I think your idea of getting professional help is a good one, and it will help lessen the stress on you. I started going to a stress counsellor about a year ago, and it helped, and continues to help, immensely. You have every right to be angry at the care-taking load you have, and without it's life-sucking exhaustion, you could ignore Bimbo. Joan's blog on simplifying your life is a good one. Somehow, you are going to have to make more time for you, and less work and stress. You are the most important one here.
How do I forget that I exist? is the title of this posting. When filling out the many forms following my husband's death a few weeks ago, I was struck by all the questions about me and documents required: birth certificate, S.I.N., marriage certificate(s), divorce certificate, etc. I had a hard time finding them. It was as if I no longer existed in my own mind. I could have produced any and all info. about my husband; it was at my fingertips. But I did exist, at least statistically. I guess the next part of my life will be reclaiming myself, the one I put aside these past 8+ years.
Mary75, I appreciate your efforts in reminding everyone of this need. I have repeatedly suggested on this site that EVERYONE who is caring for a Spouse get this important info together while they can. Most can be ordered over the internet...so as soon as you click off of A.S., go to the Bureau of Vital Statistics.. and order CERTIFIED COPIES of all these documents. What I found hard to locate was his LATE WIFE's death certificate. The funeral home insisted on that, before they would proceed with the cremation of his body. (I suppose if she wasn't dead,... and they weren't divorced.... I would not be his legal wife and could not authorize the cremation...!!!!!!!!!!) Don't even GO THERE in your head. I had to locate a brother I had heard of in San Antonio and he, as next of kin, was able to authorize the realease of the death certificate from her funeral home records.
Just could not imagine all of this would be required, and in grief, it's so much harder to get everything together in a timely manner.
Such good points. I had to gather everything together when applying for VA benefits (which we didn't qualify for - after all that!). Fortunately, it wasn't too difficult to obtain everything - but I did realize that on my own birth certificate my maiden name was spelled wrong! Had to get it corrected and that was a trial.
cant imagine if you have a certified divorce degree of previous marriage and a certified marriage certificate of your current one, why you would need a death certificate of an ex? doesnt make legal sense that a funeral home would still question authority. but i guess it doesnt hurt to have copies of this paperwork.
I feel the same way it is incredibly sad, and yet I feel so guilty about mourning MY life. I am 53 now DH is soon to be 68 but he has the brain shrinkage of an 80 year old according to the doctors. I hate this process and feeling so old already. I ewas watching Dr. Phil the other day he said something to effect of "if you don't like the outcome of your life, change it" clearly he has not been in the place we are. Dr Phil lets see if you come up with an answer for our needs! Sorry just venting!
Thank you for everything you all wrote - I haven't been on here for quite a long time because I was doing OK handling the stage we were in ("only MCI" the MD says). I can't tell if he's progressing or if I'm wearing out. But over the weekend I realized that I've got to change some things - be with healthy whole people more, for example. So that's my newest resolution. Maybe I won't lose all of me that way. But I am losing "wife" more and more as I often have to ignore what I really want or need as I've done this weekend. It's difficult to have conversation and full intimacy with a man who can't remember what day it is or how to manage his bank account, or what we planned to do today, or how we've always kissed and loved, or .... It hardly seems possible that in my 50's, working fulltime I have all these sorrowful feelings and concerns. I am really feeling sorry for myself today, and tomorrow I'm sure I will be better and trust God again and not feel like crying. I'm going to quit venting now and just go cry so I'll feel better and can do our taxes.
Just spent the afternoon doing our taxes:( Now I do feel like crying. But am glad I have the ability to do them. DH did them for me for years, now it is my turn. Oh well,life goes on. I was feeling sorry for myself the other night. I think this time of year is just hard on us all. We need sunshine and flowers and the birds singing!
deb42657 - I have not felt like a wife for a long time. ED struck back in his 40s (he is now 63) and one time at the doctors is all he would do - viagra did not work. He let me go on for over 10 years blaming myself (weight gain, sway back, etc) for the problem. I now believe it was early symptoms of AD, but that still does not correct the pain. It has been years since I remember hearing 'I love you'. He still will kiss me occasionally and opens the car door all the time, but that is it. there is a large part of my emotions that believes he got what he deserves - the AD. Back in the 80s he had a 2 year 'affair' with a girl who was 14 when it started. He talked me into taking her in as a foster daughter to make it easier for him. I never suspected. She made life a living 'hell' for our two kids who still suffer from her torment. I was so trusting I never saw the warning signs. After he was charged with 3rd degree statutory rape (they believed she was the instigator and willing partner) he went to court ordered counseling. He was diagnosed with 'detached personality disorder' and after 2 years deemed 'healed'. I believe it well could have been an early sign of AD.
Anyway, he never apologized for the affair just sorry he got caught. The story of why I stayed is long, but I did. The years have only been one struggle after another cause we never recovered from the financial devastation the affair caused.
We finally got the kids out of the house, moved into our motorhome full-time and started our dream of working as we traveled - only to have AD cut it short. I had this dream of once we were away from the stress of 9-5 jobs, kids and their never ending drama our marriage would have a new chance. The first year it was getting better and then he started having weird things happen - now I know they were early signs. that was 5 years ago. I am 58 and can't wait until this disease takes him enough to put him in a facility. Maybe then I can have a life of more than just cook and housekeeper and now caregiver that I have felt like for so many years.
Will I shed tears, feel like many do here when they place their spouse - probably to some extent. This year will be 40 years, so there will be a mix of emotions just like I have now. I occasionally will lay awake at night dreaming of what would have been, what my life alone will be like but I can't dwell too long as it will make the reality worse.
We are waiting for it to warm up in the north where I have a summer job at an RV park. At first looking for a job for me was hard - I felt bad, almost betrayal, looking for a job just for me. But I have to remember it is him, not me, that is sick. While he doesn't need me all at home all the time I have to still live some. He already is to the point where I can't go anywhere without him - he wants to go even to the laundromat. For 4 or 5 hours a day I will get a break from him and I will be where he can visit but not stay all the time. This will probably be the last time so I will enjoy it. Then we will settle either back in Vancouver or somewhere and wait, wait, wait.
Thank you to everyone for your responses. I tried to responed to everyone individually earlier today but I guess I took to long because it all got deleted. But I got it all out even though no one got to read it. The highlights of what I said is that I am going to try and call my doctor tomorrow and get some anti depressants but I don't think she will give me anything without seeing her first but I am going to try.
I do have family and friends, my family and my DH's family doesn't come and see us anymore. I have 5 grandchildren and have only seen one of them in person. The only contact I have with them is through facebook. My DH has two daughters and at least 2 grandchildren and they don't come and see him. My friends only talk to me as long as I am not being a burden and I am afraid of asking them to do too much because I can tell that if I asked" too much of them" they could run the other way. I don't really blame them, this is not an easy thing to deal with. So they will say "anything you need let me know" but...
We have been sleeping in seperate rooms for some time now and given the way I am treated and how I feel about not being a wife at all then this is the only way that I can do this at all. Joan, I have to thank you for your post because I am so thankful that you created this website so that I can say things to people that I have never ever been able to say to anyone else. You make a terrible disease a little easier to handle.
The ones that have posted since I last attempted to post I am glad that viagra was brought up because I would get upset when everyone else seemed to say that viagra worked for them (well goody goody for them) because it didn't do anything for us and I couldn't understand it until I found out that he had vascular dementia and then I knew why. I also told myself, though, that it was me. I wasn't good looking enough, I weighed too much or whatever. Of course that made me depressed too. I think I probably missed some of the other comments that I had made earlier but I think I got the gist of them. The main thing is I want everyone to know that I am glad that I am not alone, all I have to do is get on this wonderful site and there you are.
I forgot one, the comment about being jealous of others getting to live their life the way they want to and all that. I did not think my life would be like this either and what makes it worse is that I have a friend that lost her husband( he killed himself) and just 3 months later got remarried to a man that is 20 years younger than her(Whoooohoooo!) You know they got to be having fun! Don't get me wrong I am glad that she is happy and is able to start over with someone else but I can't help but wish it was me(maybe not 20 years younger but...)
Divvi, I had to have a death certificate for his former wife. They did not ask me for a divorce decree... I did have it, nevertheless, and we used the old divorce decree in defending the claims his children placed on his estate.
My challenge was that death certificate for his late wife. They were from another country..and I didn't know any of her family, addresses, etc. Just lucky I remembered the name of the woman her brother was married to... a lawyer in San Antonio who practiced using her Maiden name. Don't know what would have happened if I could not have found it. Surely they would have been able to do something.
deb, I have been thinking a lot about this topic, especially when I have to tippy toe around DH so that he doesn’t get angry or in a mood. Then there are short periods of time when he seems to be his old self & we laugh or share a thought & I think, well maybe it’s not so bad, but then in the blink of an eye that old AD shows up again & I go back to being someone whom I’m really not. Maybe getting involved with someone 20 years younger after this part of the journey is over is the answer. However I made a promise to myself even before my DH fell victim to this awful disease that I would NEVER get married again. Now I feel even more strongly about that, because I don’t EVER want to be a caregiver to a husband again…..just sayin’
One idea someone else posted here in regards to writing your comments & not losing them. Write them as a word document & then when you are finished copy & paste it into the input box. I started doing that after I lost a few entries.
Elaine, that is a really good idea! Thanks! I don't know, maybe I am too young yet to think about not remarrying again. I know that I would run the risk of having to care for another husband which sounds like an awful thought after what we have been through but who ever wants to marry me would also run the risk of having to take care of me too. So, I think it is a draw.
Remember - we have ones who lost their spouse and vowed to never remarry. Now one such person - Joe - is doing just that. We can say it but unless we 100% close our self off to others, who knows!
Deb, while caring for my late husband, I slowly crept up to 375 mg of Effexor XR. Now a year after his death, I am down to 75 mg twice a day. Take the meds now, you will need them, most of us do. Later, when things settle, you can wean down as I did. Needing a little help along the way is nothing to be ashamed of. Arms around, Susan* PS: I just graduated from therapy too!
Effexor XR is used for both depression and anxiety. My daughter took effexor xr for depression but it did nothing for her anxiety. Each person is different.
I take 40mg of citalopram (generic for celexa) for anxiety and it has helped me cope quite well. Lexapro is another drug a lot like celexa. If one drug doesn't help you, there are many others that your doctor can try. Just remember that it doesn't take effect immediately. It takes a few weeks. When I first started on citalopram, my doctor gave me xanax to help until the drug kicked in. I haven't needed xanax since.
I took Zoloft, then Effexor for years (not at the same time) ...My husband died about 14 months ago, and I no longer take either one. I sleep well, wake up rested and feel more or less like my old self again..(focus on the OLD)... when did that happen?
I don't know if this is where I say I really relate to the word blind-sided. All new deficits go wham! Some days it helps to read this and feel understood. Some days it is just too much Alzheimer's stuff. I am going to advocacy day at GA capital later in month. He doesn't get why. Just made it easier for me and said - oh for Mom & how great that she enjoys her residence. What does HD exactly stand for?