I invite you to log onto my home page - www.thealzheimerspouse.com- and read today's Blog about the losses we spouses face when our husbands/wives are stricken with Alzheimer's Disease, and post your answer to the question at the end of the Blog here under this topic. Thank you.
I lost the retirement I expected to have. I'm living in a 55+ community. It isn't one of those with activities going on all day long, but I spend a lot of time watching other couples passing by on there way to one thing or another at our community center.
I lost my social life. I lost the possibility of travelling. Not just the big trips but the little ones to cities not too far away.
Where to begin! I think it's the sense of companionship. DH and I can do things together, but can't really have an intelligible "conversation" anymore. I spend a lot of time trying to figure out what word he's trying to think of or what he's trying to say. And he usually just gives up if I can't get it on a couple of tries.
I also think that I miss the sense of being "taken care of". I get into these self-pitying spirals where I just think about how I wish he could this for me or that for me. More and more I have to do for myself, which is good in a way after growing up having people do most everything for me. But I often feel it's too much.
And feeling like we're raising our 3 boys together, that he can participate in their lives. I feel so sad for the boys when I see a dad doing something with their son. More and more I feel like a single parent. It's so hard, especially with boys, they need their dad.
I'm sure I could come up with 20 more things, but those are the biggest things.
We lost the great retirement life we would have had here in The Villages. When I see the guys going by in their golf carts, I get so sad thinking of how much my DH would have loved this life. He worked so hard and was so excited about coming here.
And we both lost the social life we would have found here. Because he was already pretty impaired when we moved here, neither one of us had a chance to make friends. So he has no friends to come visit him and I feel really alone in dealing with all this by myself. I see my neighbors getting together and I'm here trapped in the house.
It a universal loss of just about everything you can think of in a marriage. the only thing left is a physical body which gives me a sense of pseudo security, kindof like when i leave the TV on allday just to hear talking and a sense the real world is still out there. like all of you, i miss too the traveling, affection, day to day companionship, but most of all the loss of having the love of my life here to grow old with. divvi
Where to begin!? I am 51 and next week we will be celebrating our 30th wedding anniversary. I am missing so much I can't even describe and thinking of the future is just too sad. Conversation, companionship, travel, sex.......I must put up a wall just to cope.
Ditto to what everyone has said, and especially Kelly, divvi and Hildann. I'm 51, DH is 56, and we are about to "celebrate" our 25th anniversary. I know that I should be thankful that DH still knows what an anniversary is (he didn't have a clue what father's day was, just kept telling me his father's birthday was in August, not June) and knows when ours is because it's on his "blackberry", that he checks hourly as his coping mechanism, but the concept that we should be doing something to celebrate it is gone. I'm sad because there is no longer any intelligent conversation with my soulmate, just his rambling on and on about whatever he is obsessed with at a particular moment. I'm sad for my 21 and 17 year old daughters, who have seen their father go from a hardworking and successful role model, who loved taking them on vacations, going to their sports events, encouraging them in school and career choices, to someone who they have to help me take the car keys away from (my younger daughter was asked daily by her father where I hid his keys, so I finally hid them someplace new and didn't tell her, so my daughter doesn't always feel like she's in the middle!) And then, after I finish feeling sorry for my girls and me, my heart really breaks for my husband, who was looking forward to retiring early at 55 after a successful career as an attorney, and entering the local seminary (he was already taking night classes) so he could finish his career doing mission work for our church and/or teaching. He would have been wonderful.....so now he is retired, but its not the retirement he expected! We are both very lucky in that our friends have not abandoned us at all; he still goes out for lunch with numerous friends who keep in touch, and my friends are so good at getting me out of the house, but its still not what it was or should have been..... very, very sad!
It is the utter emptiness, the person you have always known is gone; not dead just gone. My late husband died of lung cancer, that was easier at least we all acknowledged who the villain was. This disease is something no one wants to acknowledge. Too frightening to them I suppose.
I mourn the person I was and my dear sweetheart's identity....i mourn what was and will never be again in this life. We had retired at age 6o, were traveling, taken up Golf for the first time in our lives; in other words, had the world just as we had envisioned it during our working years. I was in excellent health as was my DH. God was a benevelent presence in our lives and we viewed our existence with pleasure. Now my husband is no longer the vibrant, intelligent, best friend but a person I don't know. I no longer look years younger than my chronological age but now I daily struggle with the results of Parkinsons, with the evidence of our sad journey etched upon my being. I no longer can sleep through the night, am lonely especially now in the middle of the night. My faith in God has been tested for a very long time and sometimes I wonder why He seems to have left us . I grieve for our other lives and wonder about the meaning or the non meaning to this disease and our imprisonment in its grasp. But then inexplicably sometimes I have a tiny glimmer of hope spring up deep within my soul and I am renewed , somewhat ashamed that I can feel hope in the midst of this nightmare but with gratitude to our Maker for the hope that keeps me struggling to survive. My loss isn't any one thing but my life as it was and my dear husband's loss which is more tragic because he doesn't know what he has lost.
My mother had a very hard life, but when she retired she had Five Good Years? I took it for granted that I would get that too. I feel cheated. I worked hard, and at some jobs that I just plain hated and at others that bored me silly for years and years. I earned those Five Good Years!
I want to say, how lucky I feel, because my husband is 84, and he retired from work when he was 68, so I quit my job to be with him. We did get a chance to travel etc, so i realize that I have been so fortunate, and I'm greatful that i did that, even though it was financially a problem. We had 17 yrs, but he has been failing for the last 5 yrs, when I started him on Aricept. I tried to hold off this ogre of memory loss. But now the thing I really miss is the companionship. He just has no idea what's going on, and when we watch the news, he's constantly amazed and shocked at what's going on, and can't figure out why we're in Iraq. This is a man who was a News Junkie, and especially Political News. At this pont, he thinks that Obama is McCains running mate. and during the primaries, he couldn't figure out what was going on at all (but then, who could) The companionship is the hardest loss, and also the fact that he sleeps 20 hours a day, but I'm afraid to go out for any period of time, so I also miss my freedom. I'd like to go to my DD's, but she's an hour away, so I won't go unless i take DH, and he doesn't want to go anywhere much, so I miss that. I also miss my friends, whom I have made here. I just don't feel like socializing, People become uncomfortable when faced with this. Recently we were at a Wake, and I found that people were standing aroound talking to each other, and we were suddenly alone. We left.
I lost my friend, We lost our friends. We lost our social life, our conversations,going to theatre,entertaining.We lost out complete lifestyle.Then, we gained a very angry child, who needs constant attention ,and is frequently our of control.It is not the "retirement" we looked forward to.
carewife - I am one of the few who feels more comfortable being agnostic. There would be no book of Job about me - life just seems easier if I have no expectations of some god coming to my rescue. I have no belief of anything but what I have right now, so I try to make as much lemonade as possible! chris r - Your ages are similar - my DH is 83 and I am 68. And I am like ASY in that my previous spouse died of cancer. So - what I miss is that this marriage that started out as my dream marriage has ended up being the dream I had as a teenager of being a nurse! I am just thankful that a part of my personality is to 'take care'. Another thing I miss is instead of looking forward to what we are doing next, I kept waking up last night worrying about how we will manage. We are going to a rally of people like us who live in our rigs. We've never been and I had no idea the last rally had 1500 rigs there - adding up to about 3000 people! That is going to be so confusing for my DH and he won't have the energy to do much. How much walking will be involved? Will he be willing to stay put while I attend a seminar and on and on? I'm even thinking of asking him if he would be willing to wear Depends so we don't have to find toilet facilities so many times....
I find the loss of conversation and initiative to be the things I miss the most. There is no possibility of holding a decent conversation with my DH. He does not hear, will not wear his hearing aids, and does not process what he does hear. There is no initiative. I pick up one end of a bench and instead of him picking up the other end and helping me, he just stands there until I say something, then maybe he will and maybe he will not help me carry the bench.
Just having a best friend. Like many have expressed, I was REALLY looking forward to a new phase of life, and the company of my husband. As my third daughter heads off to college in August, and we have one 16 year old left at home, we were getting close to that sense of being able to go places and do things...okay, so something else instead I guess.
Leaves me in a different psychological spot. Instead of feeling like..."yay, I'm 46 and young enough to really enjoy having relatively grown-up kids and do some stuff..." I'm wondering how many years of the AD trudge are ahead and how old I'll be and whether I'll have anything left at the end.
I'm kind of determined not to go down with this ship, but certainly at this point I recognize that I have rather limited power to control how things go.
I miss sharing a laugh over a comic strip while having our morning coffee together; I miss having someone care about me, think of me, ask me what I would like to do and where I would like to go; of enjoying a special night out together and savoring a nice dinner; of playing bridge with our best friends; of attending church together; of taking the remainder of the trips abroad that we had planned; and of finishing each other's sentences.
We still go to movies (I get him a large popcorn and he'll sit still and watch the movie - but no sharing of enjoyment); we still go out to dinner (I refuse to give up eating out!) but it takes ALL of his concentration to eat his food. He can't even hear you while he is eating any more, nor can he select from the menu (even between two items) - I just order his favorite food from that restaurant. Soon I'll have to order our food to go.
I'm just grateful that he still wants to go out to eat and go to the movies! That is our social life now. Period.
I have been ordering his food for quite some time. He had not been able to decide, and the menu overwhelms him, so I'll just suggest one thing, I think you'd like. Or, look they have.... and he's happy as a clam. We don't go to the movies, he can't follow the plot. Even of regular TV shows, like Monk, or Boston Legal are way to complicated for him. Lots has changed. But today I had a doctor's appt, and I left him with my grandson, ostensibly so the boy wouldn't be alone, and he was so excited when I got home. He just kept kissing me and telling me how happy he was that I was there. There are things that make it worthwhile.
My biggest loss is my loss of patience. "I'm mad as hell & not taking it anymore." My hat is off to all of you who have patience. Yes, I understand the disease is making him change, yes I understand he doesn't want to do or say what he does, yes, I finally understand it all. (Thanks to all of you.) But, I can't take it much longer. The stress is killing me, meanwhile, he is happily blissfully unaware.
I can echo Val's sentiment. Every day I start by saying that I will not yell at him for things he cannot do and I will be patient with his questions and confusion. But I continue to somehow expect that he will be able to follow a direction or understand a simple thought. It is still a shock when I realize how limited he is...really at a 2 year old stage now, I think. How can I feel so alone when I'm not (and according to DH, there are several more people running around our house!).
I cannot tell you how many professionals and long time spousal caregivers have told me -that man is gone and he's not coming back, so you had better accept it and adjust. Well, I haven't been able to do either, so I have to go to counseling to learn how.
Val and FLgirl,
Patience? Honestly, I don't mean to make light of it, but the only spouses I know who have patience are those who are on heavy-duty anti-depressants, and those who have finally come to accept what they cannot change. Come to think of it, they're on anti-depressants too. I am also worried about the stress killing me, literally, which is why I am going to counseling. If that doesn't work, I will go for some kind of heavy duty anti-anxiety pill. I can tell you, the Xanaax isn't doing it.
I also miss the ability to have a conversation, about a T.V. show, our kids, grandkids or just nothing. Just conversation where I don't have to guess what he is trying to tell me. We always planned to travel & play lots of golf when retirement came around, however, it did come around at age 53, however, so did dementia. I miss my freedom, it is almost laughable to think that having my hair colored is a monthly treat....the whole time wondering if he will be okay for 2 hours alone or be in a bad mood because I was gone. I also miss someone who cares when I don't feel well. If it does not pertain to him, he could care less. I also miss the not knowing what is in the future for me at least about dementia, my husband's maternal grandmother & mother both passed away from this disease. It seems I have lived with dementia for the past 20 years.
I am one of the ones Joan referred to as accepting what I cannot change. However, I'm not taking any drugs except my Prevacid for acid reflux and Tylenol for the occasional headaches. My husband went away over a year ago. His body is still with me, and I will take care of the two year old who is inhabiting that body until he dies. And he will. In one year, two years or more. I do not try to reason with him. The reason button is broken. Lately the identifying objects button broke. Because he has passed the anger stage (at his own frustration, not at me), he is docile. He is still able to feed himself, bathe himself (but not wash his hair), dress himself, make the bed, take out the trash, pull weeds, and put in a DVD. He smiles at me and gives me kisses and hugs. I treasure the little boy I am taking care of, but oh, how I miss my best friend and companion! I accept that loss, however, and that is how I am coping without the aid of medication on my part. My prayers daily are for more patience, understanding and good health for all of us.
In my case something "snapped" and later something "broke." The snapping happened when I realized that he had totally isolated me and there was no reason why I couldn't leave him for an hour or two at a time and have a life of my own. I began to do some simple things like go to the library. He hated the library anyway, so it was a reasonable place to go on my own. My social life was basically gone by that time and I haven't found ways to change that. My advice is that if you are in the early stage that you create some kind of group "lunch" thing or dinner thing that you go to once a month, or even better, once a week. Human contact is necessary.
Something broke because when I took away his car keys he threatened to kill me, and he was trying to do that when I gave him the keys and dialed 911 as soon as he left. He hasn't tried to drive again since then because the nice policeman scared him. But something broke anyway. I recognized that I wanted to survive all of this. There always was this small underlying violence going on and part of me always recognized that it could come out at any time, even though it never did. Even this time there was almost no physical evidence of the violence. Only a tiny amount of redness on my wrist that went away in a couple of days. But still, if I hadn't given in, I would have died that day.
So, something broke. And what broke was my own feelings of being married. I know it is the disease, and I'm going to try to take care of him as long as I practically can. Because his version of the disease is affecting his rational thinking and his verbal abilities much more than his physical abilities, I will probably be taking care of him until the end. If he needs to be placed at some point, I'll do that, but I'll still be overseeing his care.
Wow, it is gratifying to know others feel the same. I think we are at a middle range stage...don't know how to judge..but patience is a thing of the past, so I'm trying to zone out when the anger hits so I don't retaliate and escalate the situation. I won't even pretend that I will be able to deal with the advanced care life. Fortunately, we took out LTC insurance years ago after seeing my mother's end of life...never dreaming it would be needed for something like this..just didn't want our kids to go thru what I did. BUT..that said, the bloody insurance company could screw things up for us too. Guess I am getting paranoid. The anger turning to violence does somewhat concern me also. I cleaned all of the guns out of the house a bit ago just as a precaution for violence against me and his self destruction. The thought of that just a few years ago would have been ludicrous. I find my "vocabulary" getting more colorful and have to watch myself around my grand babes...and this is just the begining?
Kathy-our long term insurance made me jump through hoops before it finally kicked in. At this time they have paid out more thousands of dollars than I ever imagined. The brain is gone but the body goes on. When I see a young, vital person in the obits I ask WHY!
Kathi37----you are not the only one whose vocabulary is getting more colorful. I spent several years crying in the car, but now I've realized that when I'm alone in my car, I cuss like a sailor (and ironically, usually while listening to a Christian music station!), and you know, it makes me feel better! The few times I've lost it at home, my daughters (17 and 21) at first were shocked, since I'm such a straight arrow, but now just smile and give me a hug. And my DH, at whom the vocabulary is obviously directed, doesn't process the bad words at all, he just smiles and tells me to have a good day, at which point I (and my daughters if they witness this) burst out laughing! And Starling, the therapist that I saw for several months after my DH was first diagnosed (DH's neurologist strongly advised me to call this guy, who specialized in "loss") helped me understand, as Joan has so eloquently stated here many times, that the husband I married is gone, and the marriage I had is gone. As one wife in my face-to-face, early-onset support group put it, you reach a time when you have to "transition" from being a wife, because your husband is gone, and instead you are a caregiver to someone you still love and took a vow to. It's so sad, and I still cry, but not as much. I guess what I'm saying is we all have to reach a point where something snaps and/or breaks, in order for us to survive this. I think if you are caring for a parent or grandparent, that doesn't necessarily occur. Which is why as wonderful as the "other website" is for informational purposes, and it is, I just never felt the tone was the same, or very helpful to my thought process. And between my support group which meets monthly, and this website, which I found at the same time our group started, I have avoided taking anti-depressants (although ALL the doctors I know warn me the time will come with this disease that a spouse needs them) and only see my therapist @ every six months!
I went to a therapist because I thought this was the thing to do. She asked me what my plans for sanity were. I had a game plan and never went back. It's funny-one of my plans was to buy a Honda Element which is a weird looking car that suited my needs. I did get it and laugh at myself when ever I drive it. It's kind of like mini macho which I now consider myself. Thus far I have avoided drugs for mood change but can understand others' need for the help. This is not an easy road to travel. bluedaze
I,, as with all you gals go through all the same difficult days.... I find myself cussing at God for doing what he did to my wife... When I call home and she tells me how proud she is because she was able to clean herself ( shower, she has lost that word ) but then says she was,nt able to find her panties which we go to that drawer everyday ,, these are the things that make me feel so bad for her I cry... The first year or so I had a very difficult time dealing with the situation ( AD ) but over time as with most of us , our love changes from the love of a spouse to the love of a child because we have lost all the things a spouse is supposed to be,, I became numb to the situation and kind of got into the mode of,,if I am not able to control the cards we were delt , I must do my best not to let it claim me also.....It has gotten to the point that I must help Dee with everything... At times I feel guilty about not pushing her to do more on her own but I find she is less frustrated if I help then to have to redue her hair after she has washed it with the cream rinse rather then the shampoo or the wash did;nt get the tide put in..... I so miss the companion I had, the affection I had for her has changed,, as has been said here before,, Its hard to have intimate affection for a person you now love as a child rather then a spouse... I admire the strength you all have with or without the help of medication and I also admire the fact that we all accept the fact that some do and some do;ent
I'd like to point out that those of us who currently don't take medication know that at some time we just might have to. In my case I have decided that I am going to survive this and I will do whatever I have to do to survive.
There are some advantages to having been on some of the other online support groups. I've seen enough "at the end of my rope and I'm going nuts" vents on Daily Support to know that I don't want to go there. And I will do what I have to do not to go there.
I don't think that the misery felt by the "daughters" who are taking care of their mothers and grandfathers is less than the misery we spouses feel. I do think that it is a different misery, which is why this place works so well for us.
I am currently not on an antidepressant either, but keep that option open at any time. i've hardened my defenses so to speak and suck it up and get on with what i have to endure as DH caregiver. the spouse part has long gone here as well but like the others state, its now caring for a dependent child. there is a special 'look' that comes at various moments when DH is rendering complete faith in my care with him, and the helplessness of that look is just overwhelming to me. at that moment i just KNOW i have to do my best and keep my emotions in the 'survival' mode as well to get thru this ordeal -at times i have been clinging to the edges of the bottomless pit but seem to manage to climb back out..we all need extra super human strenghts. divvi
The most difficult loss -- I’ve been thinking about this for several days. This is the list so far:
the loss of my own health and emotional well-being the loss of our life savings to meet DH’s medical costs and our living expenses the loss of all those hopes and dreams for the future that make life livable the loss of my sister, who I thought was my closest friend in the world, but who dropped us both instantly (and permanently) after the diagnosis
All this is in addition to losing the husband I’ve shared my life with for nearly 38 years. He was the one person who loved me, no matter what. A kind, gentle, faithful man who stood by me through thick and thin. His eyes never failed to light up when he saw me. He would get out of bed on a cold winter’s night to get me a drink of water, and would always leave me the last cookie. He always said “thank you” after eating a home-cooked meal. He knew all my jokes, but would laugh at them anyway. He sat right by my side in the hospital for five days and nights when I had surgery for cancer. When the men at work told him to trade me in on a “new model” because I was disabled and could no longer work, he thought they were crazy, because he didn’t want anybody but me. How do you put into words the loss of a husband like that?
Jan, I agree with your comments. I, too, have lost my wife, companion, team-mate, etc. At least she doesn't show the anger and violence some have mentioned. Also, I feel fortunate that all the family - children, siblings, cousins, etc. - are supportive and seem to understand what is happening. So far, none have tried to tell me what I should be doing (other than our daughter who pushed us to move into the retirement community - she was right).
In another section someone commented on this country's lack of universal health insurance and suggested that the doctors were stopping it. Here is one doctor who agrees that we need something different and will vote for Obama.
Marsh, Good for YOU. So glad to hear it. My former husband was a nephologist & wanted to start a union for physicians! (I made the comment.) We so differed on our opinion about this. Even back in the late 70's, when I was a medical social worker, I saw the devestation to families having to go the Medicaid route. Never in my wildest imagination did I think I would be one of the victims. I lived in Berlin for 6 years, and believe me, the system was so much easier. I never saw a bill. Contrary to what people think, you can change doctors at any time. There was no waiting in clinic like settings. AND doctors can have a private practice on the side. One of my best friends was my OB/GYN, and he had a private practice. (He was a friend before he became my dr.) The American public has been bamboozeled about how the whole thing works. We are too busy spending money on war (I'm a pacifist) than on helping our own people. I love America, but I don't understand it. How did everything get so out of control? I think more & more doctors are coming around. (Physicians for Obama)
My former husband's residency was internal medicine/surgery. He was working with Dr. David Hume, the heart transplant specialist & did a double residency. Pulmonary. wow. Maybe you could help me get through the labrynth of all this. I guess you mostly dealt w/ COPD however. I don't want to burden you, but some of the abstracts are difficult.
dandee, I SO understand where you are coming from.!! Go to the same drawers everyday to get the briefs, to get the socks , but it is a daily routine. I too agree with the feeling intimate when he cannot even remember to dry off with a towel after a bath, wipe his butt, or repeatly pees on the toilet seat! Just lots of turnoffs !!!! I actually feel smothered at times- I cant turn witout my shadow right there!!