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    I have been reading the comments, and occasionally adding my own, for the past month. My wife is in stage 4/5 of AD. One thing I have noticed is that the wives of husbands with AD are able to express their feelings and emotions, while the husbands of wives with AD generally just make factual comments. I would like to hear more of what other husbands are going through.

    My wife is still able to enjoy going places with me - such as bible study, meals out, Gilbert and Sullivan - but the next day has no memory of having done it. She frequently is very tired so that she can't even help me with setting the table. She spends most of her time sitting in the chair next to me while I am working at my desk. She used to be an avid reader, but now barely cracks a book or magazine.

    Now I have done just what I said above - given factual information. What about my feelings and what I am going through? I find it very difficult to put into words what I am feeling. One friend asked me the other day whether AD is harder on the patient or the caregiver. My answer would be the caregiver, since the patient doesn't remember the bad times, but we do. I am trying to remember the good times we have now (there are still some) and those we had during the past 54 years of marriage.
    • CommentAuthorAdmin
    • CommentTimeMar 4th 2008

    You are so right. It's a scientific fact that men talk about "things", and women talk about "feelings". Sid gets together with his support group buddies once a week, and I asked him if he discussed with the guys, his feelings about everything that is upsetting him. He looked at me in total shock - "NO", he said." Guys don't talk about feelings."

    That said, I can tell you that quite a few of our husbands here have expressed their emotions on these boards, and have done beautifully at it. I tried putting their names into the "search" section above, but their comments do not come up, just how many comments they have made. They all talk about the loneliness, hurt, and loss they feel. One of our younger men talks about how angry he is that this disease robbed him and his sons of a future with his wife, their mother.

    Please look on the left side of the website, click on "love stories", and scroll down to the one Dick S. wrote about his wife.


    • CommentAuthordandee
    • CommentTimeMar 4th 2008
    OH Boy.. Where does one start...... I guess the day she was DX , It had taken me months to get her to go to a neoro and without a doubt the tuffest thing to watch was when the Doc got her frustrated ( thats when the confusion really shows ) I was in shock, the one I just spent more than 40 years with could,nt even tell the numbers on a clock.. The doc took me in the other room and I knew what he was about to tell me ( I thought the concrete floor was shaking but it was my heart beating ) He told me exactlly as I suspected AD at 58 ( 2 yrs ago )... I could hardly keep myself composed on the drive home and on the way Dee begged me to never take her there again ( I have not ) I dropped her off at home and told her I had to run to my shop , I'd be back shortly... We live in a rural area so I drove to the end of the road stopped and cried like a baby ( us guys don't cry ) I know the exact spot cause I go by there almost every day and I do think of that day always as I go by....... Then I had to tell my two boys.... again guys don,t cry remember which I did,nt but the tears sure were there. ( The thing I remember telling them over and over was to be sure to visit and spend time with there mother cause she will remember the ones that spend the most time with her )Its been a tuff couple years sinse the DX ( it started before that ) Whats missed is no differant then the girls.....We miss everything a spouse is,, the love,the friend, the one you could go to , the one you shared decisions with, the one you tease, flirt with, hold and enjoy spending time with........... We enjoyed our times together but also enjoyed the times apart and the statement ( absense makes the heart grow fonder ) was always true with us....... I do miss all the above thing cause now most of those feelings are gone,, I can,t explain it,, my love is still there but it,s a differant love... as its been discribed here on other post.... its a love for a child more so than love for a spouce ..... I miss my independence, I miss the things that are supposed to happen to a couple in there late 50s early 60s..... and when I think of those things (mostly my independence and what I miss ) along with those thoughts comes the guilt for feeling that way........... Damn-it why us,,, she was perfect in every way
  2. y-chromosome lack of expression there. You've almost exactly expressed my feelings. I guess we're not SO different.
    For years, even decades, I felt that my husband was afraid of something, but I could never figure it out, I knew he was brave, and if I even tried to ask, he'd change the subject. Eventually I would know that he feared losing his mind (who wouldn't?). He was the sort who never told me anything he thought might upset me, always the protector, and for the most part, that was OK. But even if he had said, 'I'm afraid I'm losing my mind,' I would have pooh-poohed that, he seemed perfectly fine to me--a little different, a bit quirky, but his mind was certainly OK. So this exchange has made me wonder how men & women react to this disease, will women acknowledge it sooner than men? Are wives quicker to spot it in a spouse than husbands? I always thought something was just a bit off-kilter, but never, never did I think we were dealing w/a brain disease. And, yes, Dan, my husband was also so perfect in every other way. I felt lucky to have married him. But there have been times when I wondered who the hell I was married to, did I spend half a century with someone who was living on a different plane than I thought. Damn.
    Dan, thanks for your comments. You said exactly what I have been feeling, but couldn't express. I'll even admit to the tears. Frequently my wife will say that she shouldn't be causing me so much trouble and that maybe I should get rid of her. I remind her of the promises we made 54 years ago - "for better or worse, in sickness and in health" - and that I stuck with her in the good times and I'm definitely going to stick with her in the bad. The love is still there and very strong on both sides. I wish our kids weren't so far away - Massachusetts, Chicago, and San Francisco (we live in Maine). I liked the comment someone made about Mother Teresa saying "I know God won't give me more than I can handle, but I wish he didn't trust me so much".

    Regarding Bettyhere's question about women being quicker than men to spot AD in a spouse, I think you are right. One day our oldest daughter came to me and said "I'm worried about Mom's memory". This made me admit that I had also noticed it, but was in denial. A visit to a neurologist a couple of weeks later confirmed the Dx. And this was a woman who had a photographic memory in high school.
    • CommentAuthorbaltobob
    • CommentTimeMar 4th 2008
    Thanks, Dan, for your excellent post. Right now, I appreciate that fact that my wife can stlll do things with me although I don't think she understands much of what is going on. She happily just takes my hand and enjoys having something constructive to do with her day. We only recently reached the stage where I don't dare leave her alone. This is very confining because I don't have anyone who can come in and stay with her any period of time. Our two sons will come over if I need to go to a meeting but that's only 3 evenings a month.

    I resent the fact that I can't have time to myself and I also worry that the boys will be missing the best time that she has left. The overwhelming emotion that i feel, though, is the love that I have when I hear her laugh, hold her hand and see her smile. I hope that outsiders can see how wonderful she is even with her dementia. We went on a trip last April and the women all fell in love with Mary. She is just so innocent and pleasant.

    The other feeling that I have is a need to emphasize how wonderful a person she was. She was a first grade teacher for 28 years and was loved by pupils, parents and colleagues alike. Where are all those people now? I would love it if her friends would offer to take her to lunch or would just stop over.

    You know, Marsh, you're right. It is hard to talk about your emotions.
    • CommentAuthorWatchman
    • CommentTimeMar 4th 2008
    I've been taking care of my wife since basically 1999, when she was let go from her job as Municipal Treasurer/Bookkeeper for 25 years. For two years, I watched her struggle through menial, low paying jobs, trying to find some firm footing. At that time she was being treated by our family doctor for depression. Finally I just got to the point where I said "enough is enough". I told her that it was ok that she didn't have to work. Another visit to the family doctor and he said that he felt that we were dealing with either depression, or the beginning signs of Alzheimer's.

    Not knowing which way to turn to help her, I contacted a number of organizations and the only help I got was brochures and a list of support groups. As many probably have had to deal with, we were in need of some financial support to help keep things afloat. As a last resort, I turned to Social Security to inquire about SSI, and during the conversation with the SS rep, he indicated that he felt that we would be better off appling for SS disability. Our family doctor advised me that I should expect to be turned down, but we could appeal. Believe it or not, she was not turned down.

    My son came up from North Carolina and approached me about taking her with him back to North Carolina to be evaluated at a Memory Assessment clinic run by a well known Geriatric Doctor. I let her go, not knowing the impact that it would have on her. Had I known then what I know now, I would have never let her go.

    We got the evaluation and it came back that her symptoms were consistant with Early Onset Alzheimer's. While we were there, I made a second promise to her, in addition to the first promise when we got married 41 years ago. The second promise to her was that I would be with her no matter what.

    She now is in late stage, stage 6/7 and she is still at home and I will keep her there until the end. She was a veteran so she is medically taken care of by VA and though them I have caregivers coming in to assist.

    Through all of this, I have been on an emotional roller coaster. I have felt anger, sadness, frustration and even more. I watch my wife of 41 years, my friend, my lover, my wife slowly disappear. Each new symptom I have seen it seems to rip out a peice of me, because I know there is nothing that I can do to help her get better.

    There are times when I get very frustrated with her and I have to drop what I am doing and walk away. Like most men here, I am lonely, with no one to turn to, other than the forums. Many of us here, not only made promises to our wifes, but many keep the promises, no matter how hard it is. We opt to keep our promises because promises are to be kept, so we will endure the anger, sadness, lonelines and frustration even if we don't tell anyone how we are feeling.

    • CommentAuthorC
    • CommentTimeMar 5th 2008
    Dear compatriots, I will say a few words about how AD makes me feel. It's hard for me to write these words.

    I grew up in a rural farm environment where personal responsibility was a big thing with my parents. No crying, whinning, feeling sorry for one's self, excuse making or blaming other people. Just duty, honor and hard work.

    So here I am at age 72 caregiver for my dear wife M. She is now late stage 6. I do these caregiver tasks willingly as I promised when we married "...for better or worse..." There has been pretty strong love between us for these 42 years of marriage. I know that I will never get married again.

    I know its time to bring Hospice help into our situation. However, I'm in denial about needing Hospice. Perhaps I can ask her doctor for a letter about Hospice at her next appointment in several months.

    My feelings in recent years are mostly anger, fear, sadness, loneliness, frustration, duty and a sense of irreversible finality. An Olympic skier must feel this way when rapidly going down the ski slope to a big jump off into the unknown.

    I stand 5'9" tall, weigh 135 pounds and am in pretty good health. I take my medications and have regular medical checkups. Through it all, I remain cheerful, upbeat, active and not depressed by these awful events.
    • CommentAuthorAdmin
    • CommentTimeMar 5th 2008
    Hey Guys,

    You're doing great expressing yourselves. It has to help to know that other men are have the same "feelings" as you.

    Let's hear from Tony, Dick, Dave. Did I forget anyone?

    • CommentAuthordwgriff
    • CommentTimeMar 5th 2008 edited
    We have been together since we were 15, 56 years ago.
    All was going quite well. She was an illustrator for a publishing company, but worked out of our home. One day the company sent her a letter: Resign or get fired.

    She told me that evening through a lot of tears. One of our daughters had earlier worked for the same company and knew the owners. She called: “This is not like mom.” The extended her medical coverage for another 6 months.
    We went to the doctors, the specialists, the shrinks, the whole thing. When we were through they said there was evidence of early onset dementia. Six months later it was confirmed.
    She was devastated. I cried for the first time since my mother died. I was with a friend one day and put my head down and just cried like a baby. It was the worst thing of my life.
    That was in ’99 and we are still going. Mid stages somewhere.
    We still do things together, today we are driving to stay over night with a daughter, and then on for the weekend with another, but it is not like it was.
    More than anything I really miss the partnership that has been replaced by some nutty kind of dependency. I even went to court and got it made legal that I am her guardian. That was another hard day.
    Admitting there are problems is never easy for any of us, I guess, but this one has hit me in the gut.
    We have 4 wonderful daughters, but none live close. I could go on and on. It is this profound sense of loss and the accompanying sense that I am doing tasks that I am ill prepared for, whether that is cooking, managing the home, or just being a survivor.
    A while back I went to my doctor, a woman not too long out of medical school. She is young and wise. She asked how I was and I parroted the line: “I am fine.” A minute later she said: “You are not fine, but you are coping. I want to see you again in a month.”
    I am coping.

    • CommentAuthortony
    • CommentTimeMar 5th 2008
    While I share many of the same emotions as stated above, I have to add that EOAD while both under 50 with kids at home to still raise has me say at times I didn't sign up for this ride. But then I say to myself she didn't ask for this either. I think to me as hard as it is for me to watch her slip away from me, it's even harder for me to watch my sons as they watch her regress. To see my 11 year old help feed his mom like you would a baby makes me proud the way he is stepping up to help yet so sad that he has been robbed by this terrible disease of a mother who can no longer offer comfort advice and now even show the love she has for them. EOAD has robbed them of having a mother to grow up with and me a wife to live out our dreams we once planned together.
    • CommentAuthordandee
    • CommentTimeMar 5th 2008
    Tony I feel for you every time I think about your situation, and how ,even though my wife was DX in her late 50s,( even though she is classified as EOAD ,her was nothing like your wife ) How horrible difficult your situation must be..... Hang in there my friend , take the best care you can for those boys and dream of better times.... Dan
    I appreciate all of you men sharing. Your stories are very touching. Even tho my husband is the one with MCI, when I read what all of you write, it makes me know my husband would take care of me as lovingly as all of you do with your loved ones. In our "modern" world today we don't hear much about long term committment in marriage. It is so comforting to know that there are still people with character and dedication like all of you. Thank you for helping me understand my "other half" better and helping me remember the wonderful qualities that he used to have that have been taken away from us. God bless.
    In Joan's blog today she mentioned men having to learn to cook, do laundry, and,her least favorite job, iron clothes. Thanks to permanent press I have not had to learn to iron. For cooking, I was brought up with the idea that the kitchen was off-limits to the men, so when I had to take over that duty I had no experience other than cooking over a campfire. One source that I found very helpful is a magazine called "Cooking for Two". My wife, who was an excellent cook, even says she enjoys the meals I prepare.

    faith&hope mentions long-term commitment in marriage. My wife and I first started dating when I was 14 and she was 15. We never dated anyone else seriously after that. 8 years later we were married, and will be celebrating our 54th anniversary in June. While it's hard to see her going down hill with AD, we have lots of good memories of our long life together. Fortunately, her long-term memory is reasonably good.

    As baltobob said, my wife enjoys just holding my hand while we walk, shop, or just sit in the apartment. While I am at my computer (like typing this) she periodically gets up from her chair to come over and kiss me. As I have said before, the love is still there, and maybe even stronger.
    • CommentAuthordandee
    • CommentTimeMar 6th 2008
    Marsh.... Your last paragraph brought tears to my eyes... I hope my love for and from Dee is as strong as yours and hers tru-out this journey.... thanks for keeping the brightness in our day.........
    • CommentAuthorDave S
    • CommentTimeMar 8th 2008
    Over the past few weeks, I have had a very difficult time putting anything into words. Maybe it's because I can no longer put my emotions into a readable format. To say that I have lost control of my emotions is an understatement. Just to look at my son or daughter or any of my LO's brings a tear to my eye and a crackle to my voice. An increase of medications is helping to give me some control back. Kathy woke up this morning to a new day. The look in her eyes is one of confusion; of being lost and maybe feeling scared. The emotion is missing from her voice and her touch is a bit cold. She is sleeping now giving me a break to recoup myself and leave my pity party buried somewhere.
    We went to the neurologist yesterday for another MRI. Afterwards, I met with the doctor who said that the atrophy on Kathy's left side of the brain has worsened a lot. I guess I expected that result. I asked the doc if she could guess a lifespan and she replied maybe 3 years. Of course, we all know that's just an estimate and could be off by a long shot. But it did kind of put a finality to all of this torture. It is my wife who I am feeling so bad for; there are no meds to slow the course of the disease; nothing tangible to make her life any easier or happier. This just makes my role, as it makes all of our roles who are touched by this disease, all that more important. It is up to me to continue to love Kathy like I never loved her before; to somehow touch her and show her that she is very much loved and cared for and wanted. And it is to this end that I will strive to accomplish.
    What has been written on this board over time has helped to strengthen me and give me some hope that my wife will make it through this trial of life. Thank you all for your help and kindness and bless you all.

    Dave S.
    • CommentAuthorAdmin
    • CommentTimeMar 8th 2008

    My heart goes out to you. None of us deserve this torture - neither the AD sufferer nor the LO who has to care from them. Your warmth, kindness, and love show through in your writing, and somehow, deep inside of her, I am sure your Kathy is aware of it.

    • CommentAuthorterryt
    • CommentTimeMar 8th 2008
    This thread really is difficult to read and discuss but here goes. My wife was 53 when diagnosed and is 57 now and in stage 6/7. Has been incontinent for past year and can do nothing withoust assistance. She has had a couple of gran mal seizures since last year. I work full time and have caregivers in house 5-6days week. I left my wife at a private home for dementia patients this weekend to do an assessment for future placement. My nerves are shot, I am very emotional and feel a lot of guilt knowing that she must be suffering some stress from the change. I call every couple hours to check on her and have done every little project that I can find to do around here, just have to stay busy. I also told her that I would always take care of her and after 32 years of marriage I feel I have done a pretty good job. That was until yesterday when I drove away from the home. Yes, I cried, I have tears in my eyes as I type this. I know she needs more care than what we currently provide at home and this is the best option to give her the 24/7 care that she needs now. Why can't I do it at home? Why won't the caregivers that I hire do a better job? Why aren't they more dependable so I could keep going at the house a little longer. The answer is that I am exhausted from working every day and then coming home to be the caregiver, shopping , cooking, cleaning, changing, washing , toileting etc etc.....There is no end to it and some things just don't get done. I'm tired, sick, exhausted and emotionally drained yet my mind still tells me I need to be doing more for her. I want to, I just can't find a way to do it at home. Now the guilt of looking outside the home is overwhelming and I feel that I may be letting her down. I believe I can spend more quality time with her if I don't have to be the caregiver but I don't know if I can go thru with this. That is how I feel today.
    Your words are very touching. Your wife is so fortunate to have such a caring, tender husband. I have heard my husband say in the past that the most important thing to him is to take care of me. Now that he has dementia, that has bothered him more than anything else because he can't do what he used to be able to do. I remind him that he has and is taking care of me by the pensions that we get due to his years of work. You both are so young and have been robbed of enjoying your Golden Years. God bless you. Thank you for being so honest and open.
    • CommentAuthorAdmin
    • CommentTimeMar 8th 2008

    You are no different than hundreds of other spouses who think they can do it all. You cannot. You have nothing to feel guilty about. You did the best you could, and now it is time for the professionals to take over. You will still be there for your wife, but you will be better mentally and physically without the burden of working AND caregiving.

    I am so glad you felt comfortable enough to share your thoughts and feelings with us. We all understand and support you.

    Terry, I know how you feel. I had to place my husband for my own safety and well-being. I cried so when I left, the staff was yelling at me, 'slow down, Betty, be careful, be careful.' But we are only human, not a saint among us, and we cannot do more than we can do. We promise in 'sickness & in health' but that does not mean we have to do it all by ourselves in the home. A loved one in a decent facility is still being cared for by you, you will still be in charge, you will be surprised how much you will still be involved. And, absolutely, you will have more quality time with her, you'll get your sleep, work w/out worry every minute. As for letting her down--I don't think so. If it were reversed, I would not want my husband or my children to ruin their health trying to do by themselves what it takes a professional staff to do. Sometimes you get a good home caregiver, but they are rare and you still have so much to do. The guilt often keeps caregivers from doing the best for themselves and also keeping a loved one at home too long when a facility will give better care. I am glad that you were able to get so much said in your post, I hope it gives you a measure of comfort. We all know that you have done all that is humanly possible, that you love your dear wife beyond measure, but it is the nature of the AD beast to push us to the breaking point. Time to take care of Terry for a bit. If there is no neglect or abuse in the facility, your sweet wife will be OK. It's harder for us, the caregivers, to adjust to being alone.
    • CommentAuthordandee
    • CommentTimeMar 8th 2008
    Terry........ I can feel your hurting right through your words.... My wife is now 60 and about in stage 5...... The guilt your feeling is one of the most difficult parts of what we all go through. It seems as the stages progress the burden of guilt increases... I commend you for your continued love and devotion to the one you promised to take care of.. I can see that for all of us , the dicision making that we all must face can be overwelming.... I, as with you have learned that crying and tears even though we have always tried to hide them, are now a part of our lives... As time moves along through this journey, we must learn that no matter how hard and hurtfull our decisions are, there is going to be decisions we make that hurt but must be done for our own well being.. I only hope that when that time comes to make those decisions , I have the courage and strength to do the right thing and to realize that I must move on for me
    • CommentAuthorjimmy
    • CommentTimeJan 7th 2009
    ttt for Herenow
    Jimmy, I'm so glad you brought this thread to the top -- I hadn't made it that deep back into the archives yet, and this lets me get to know some of the other husband caregivers. I'll see if I can get myself into the mood later to share some "feelings" about this AD journey, but the truth is that I haven't dwelled much on "feelings" -- I was an engineer in my earlier life, and engineers tend to look at the world from a viewpoint of problems to be solved.
    • CommentAuthorjimmy
    • CommentTimeJan 7th 2009
    I am also in an Engineering related profession, construction materials testing, I also tend to focus on problem solving. In my professional world everything is either black or white, there are no shades of gray. I find it difficult to express my personal feelings and emotions because I have been trained to keep those emotions and thoughts out of reports and only record direct observations without expressing any personal opinions.

    I saw this thread this afternoon and read all of it. It is comforting to know that others have the thoughts and emotions as I have and that I am not out of step with the rest of the spousal AD caregivers.
    • CommentAuthorbriegull*
    • CommentTimeJan 7th 2009
    Some of us women have been, if not engineers, certainly problem solvers in our "before" lives, Gourdchipper - maybe you could say almost anyone who's survived motherhood has to be a problem solver. We can deal with feelings too - but we're just as interested as you in finding solutions to day-to-day dilemmas.
    • CommentAuthorAdmin
    • CommentTimeJan 7th 2009
    I invite everyone to log onto the home page - - and ready Thursday's (1/8/08) blog, which is about male caregivers. Rather than make a new discussion, you can post your comments here, as it is an appropriate thread for the blog.

    Thank you.

    I am a female but I agree with your accessment. I also agree that the male caregivers who are here on this board are
    a VERY caring and loving group of men. I am amazed by all the things they do taking care of their wives.

    My DH has always been controlling of my ambitions and wanting to keep me "under his thumb". He never wanted me to
    work unless I was working with him (so I didn't). I can no more imagine him taking care of me, if our situations were
    reversed any more than I can imagine him ever washing dishes. He never did it and his father never did it and most likely way down the line, and our son never does it.

    I envy the wives of these caring husbands during this difficult time in their lives. My son in laws help my daughters with cooking, cleaning, laundry etc. and I think it is great to share the boring everyday duties.
    • CommentAuthortrisinger
    • CommentTimeJan 7th 2009
    If you had told any member of our family 5 years ago that I'd be cooking and washing clothes, they would have laughed you out of the house. That's what I did, and I did it to hide the dementia that I denied. I wasn't good at it, which is why I got caught.

    As the AD progressed, everyone told me how wonderful I was for taking care of her so well. I always said, "Well, she took care of me for 40 years, so it's my turn." But I didn't feel heroic. I hated the whole damn situation, all the time.

    I skipped crying and went for mad. I was mad and angry all the time. I was mad at her, I was mad at me, God, the doctors, my kids, fate, you name it.

    When she finally went into the NH and Hospice and I was faced with that we were actually going to lose her, that's when I cried. It was so unfair and helpless. I cry now when I find something of hers that meant something to us, and I cry when I think of all the things she will no longer do. I'm not angry anymore, but I still cry every now and again just to give myself a pity party.
    Imohr…never underestimate what a man will do if necessary. My FIL was a VERY impatient person. However, he cared patiently for my MIL at home for seven years when she (probably because of drugs) was nothing more than a zombie. When he finally put her into a NH, he died several months later from his long-standing heart condition.

    I was young, working, with kids at home. I had absolutely no clue as to what he was going through and even though we lived close by, I was no help to him at all. Things I totally regret now that I have more understanding of what it means to be a caregiver, which makes me much more appreciative of what my children do to help.
    Lori - thanks. I can relate to your experience about being of no help to your FIL. In my case it was my Mother who was a caregiver to my father the last 10 years of his life. He did not have AD but a dehabilating heart condition and died at 49.
    I have regretted I did not help her very much. I had no understanding of her situation.
    • CommentTimeJan 8th 2009
    trisinger, I do the mad thing too. It isn't only the guys who go that route. I haven't cried. I've been mad, I've been angry. I use the anger to fuel the energy levels so I can do what I have to do.

    There is the possibility that when I get to the end stage, I'll fall apart. I'm aware it is possible. One of my "problems" is that because my mother isolated us from her huge (literally huge) family, I haven't experienced all that much death in my life. I was 4 when my father died, and I cried a river over that once I was 7 and finally "got it". And I cried a lot over my mother's death as well, mostly when I was sure I was alone. So I know that at some point, I'll be crying about this too. Just not quite yet.
    • CommentAuthorC
    • CommentTimeJan 8th 2009
    Since my last posting on this thread on March 5th, my wife M's condition has moved into stage 7. She nearly died in July and I had to call 911 to get her to a hospital. I enrolled her in the Visiting Nurses Association hospice home care program three weeks ago.

    Changing doctors and medications from conventional to hospice has been a learning experience for me. VNA has been a big help both emotionally and medically.

    My wife is very close to bedridden. I have to pull her out of bed in the morning for a light breakfast. She sits in a favorite chair most of the day looking at pictures in her books. I must hold her arm when she walks in the house. She can't safely get in or out of a car. At 4 pm I feed her a light supper snack, medicate her, bathe her and tuck her in bed by 5 pm.

    When she can no longer get out of the bed, Visiting Nurses will send a "personal assistant" to help me with her. We have been married for 43 happy years together.
    • CommentAuthorBillH
    • CommentTimeJan 8th 2009
    I have been reading Joans blog and the message board for a long time but hesitated to write about very intimate things. Since this is for husband's maybe it is alright to talk about what I have been through these past three years. I have learned how to put a bra on my wife, select and put her clothes on her, take her to the bath room and clean her after she uses it. We have a routine where we go to see Doctor's, I take her to get her hair fixed once a week, and once a month we get her a manicure. I am fortunate in some ways as she is always pleasant to people and thanks me for what I do for her. We have been married for 65 1/2 years. We are still able to go to church sunday mornings. She doesn't remember anything from the past but seems to recognize names of friends although not why she knows them. I never leave her alone, and she sleeps a lot but we have managed to get along fairly well under the situation.
    C, I'm so sorry to hear about your wife. My thoughts and prayers are with you and your wife. Please let us hear from you more often!

    BillH, I'm glad you commented. It will be helpful to the other men who are just beginning this journey. My thoughts and prayers are with you and your wife also. Congratulations on the 65 1/2 years! I think that is a record here, but I could be wrong.
    • CommentAuthorKadee*
    • CommentTimeJan 8th 2009
    I also would like to congratulate Bill on 65 1/2 years of marriage. I also love, love that you take your wife for her weekly hair appointment & monthly manicure. What a wonderful husband!
    BillH you should be very proud. You are a real keeper
    Congratulations, Bill -- you've got Frances and me beat by six years -- we're coming up on number 60 next September!
    I’ve been sitting here for a long time, in these few midnight hours that I can claim as my own, waiting for the muses to inspire me to write something about how I “feel” about this Alzheimer caregiving journey.

    Well, for the most part, I feel lonely – I guess that’s what first drew me into these AD forums six months ago. Engineer that I am, I opted initially for the Caregivers Forum on “the other site” since it was my impression that it offered more in the way of problem-solving answers. Sunshyne (using a different email addy) invited me at that time to visit this Spouse forum, but it took me several months to conclude that I really needed to be in the company of people facing more nearly the same issues that I was facing.

    I’m basically lonely for someone to share things with – I’m not sure that I really exist as an “independent” person – for all my adult life I’ve existed as half of a marriage partnership rather than as an individual. Sure, I had an exciting and rewarding engineering career and existed as an individual in that context and environment (security issues forbade my sharing much of that with my wife, Frances, anyway), but during pretty much all my time away from work we were engaged in things together – dancing classes, parties, bridge games, child rearing, extended family, travel, and finally, after retirement, building and landscaping the beautiful home place where we now live, followed by more extensive travel and shared hobbies. And Frances now remembers almost none of it – some days a little more than others – and that hurts. I think I said something in an earlier post somewhere about remembering an observation that Nancy Reagan had made to the effect that as couples get older, about the only thing they’ve got left are shared memories, and that it’s very lonesome when those memories can no longer be shared with the other party.

    My caregiving role developed gradually over a period of quite a few years, so maybe it’s sort of like the story of the boy who lifted his calf every day until he became a grown man and the calf became a full-size cow. We first started noticing some slight memory issues as far back as ten years ago – misplacing things, not remembering people’s names, etc. – but didn’t actually seek medical attention until seven years ago, at which time the neurologist did tests and brain scans to rule out other causes and started her on Aricept -- without an official diagnosis of AD (but that was the logical presumption), which he subsequently confirmed when pressed about a year later. Namenda was added as soon as approved by the FDA, and progress of the disease was slow and even for quite a number of years. As different things became too complicated for Frances (banking, appointments, correspondence with extended family, driving, pills, meal planning and grocery shopping, then later cooking, dishwashing, laundry, housecleaning, etc. in about that order) I was able to compensate, allowing us to continue living pretty much a normal life. And, in an attempt to keep Frances “engaged” as much as possible, in hopes of keeping the neurons active, I made conscious efforts to keep us socially active and add new challenges that we could undertake together – mostly hobby related.

    I have pretty broad shoulders, so that all worked out well enough until Frances suddenly developed physical balance issues just a bit over a year ago (perhaps an undiagnosed stroke?). We had been walking two or three miles a day for exercise up to that point, but then overnight we were down to just managing maybe one mile, and that with her hanging onto my arm for balance. Then about six months later something else, perhaps a succession of UTIs or falling three times within one week or maybe another stroke, almost completed the job of knocking the wheels out from under her. She now sleeps most of the time, has to be helped to shuffle, very slowly and carefully, between the bed, the bathroom, her recliner, and the dining table – which now constitutes her whole universe except for infrequent and now very difficult trips to the doctor or to the beauty shop for haircuts. She needs a haircut now – what the heck, I may just try to do it myself – I should be able to learn to do that just as I’ve learned to do everything else like manicures, pedicures, and makeup! She no longer cares how it looks anyhow – but I do. Just a short time ago she was still a beautiful, smart, talented, popular, caring woman – now she’s on track to becoming just an eating/sleeping/excreting organism. I guess I can also learn to deal with incontinence and bathing her in bed once she becomes bedridden, but that could potentially become a tipping point – maybe at that point I’ll finally have to consider calling in Hospice or something like that for assistance – I’m not sure it would be fair to put our son (more about him in a second) through any of that. He’s been a real trooper thus far, with no hesitation to do whatever he has to, but when we start talking about bedridden and incontinence he starts trying to lead me to thoughts of placement.

    But she’s still “in there” at present, and as long as she’s still in there I intend to do everything I can to keep her happy and comfortable and at home. Just now (it’s no longer midnight) as I brought her back from the potty I told her that would cost her a kiss, so I gave her a kiss and then another – and she said “that’s two – you’ll have to give one back!” Although she’s declined noticeably in the past few weeks, she still thanks me when I take her to the potty or give her a shower, and still tells me she loves me when I tuck her in for the night – although she may be confused sometimes about just who I am. I’m OK with that, and our son was OK last evening when she asked him who his parents were.

    Everything I read keeps urging respite time for the caregiver, and I guess I’ve been very fortunate in that regard. Our unmarried elder son, a licensed mental health counselor and confirmed bachelor, now 52, has moved back in with us “for the duration” to help me care for his Mom -- and his thoughtfulness in offering to do that is probably the one thing that has really brought tears to my eyes. I think he’d been keeping his eye on me, and when I admitted to him that I’d begun to look into support groups like this forum and a nearby adult day care facility, he made the offer. He’s definitely a “right brain” person, patient and empathetic, and he works hard to moderate my Type A inclinations and make me slow down and try to live more in Frances’s reality. He has a flexible schedule, seeing clients (mostly kids) at odd times, but can be depended on for help as needed evenings and weekends so I can run errands like grocery shopping or whatever. And he keeps asking if I wouldn’t like to take some time to just go to an art show or walk on the beach by myself or schedule lunch with friends or whatever, but none of those have any real appeal to me – those are things that I’ve always done together with Frances. I guess I’m not a loner – never have been, and don’t want to be.

    The engineer in me understands how Frances’s AD journey must ultimately play out in the end, and my engineer is already thinking in terms of problem-solving the question of “where do we go from there?” – maybe an analogy would be the football coach who puts a team loss behind him and instead focuses on preparing for the next game. As I’ve confided on another thread, I’m already thinking in terms of my life “after” -- about which I feel no guilt: Frances and I had told each other years ago that we’d expect the other party to find a new partner if one or the other of us died. I’m not sure remarriage would be the right answer or even doable at my age, but I do know that I wouldn’t want to live out my remaining years alone, so I’m already beginning to “work the problem” of lining up a partner for “after”. Someone, I think it was Starling, said that she believed that the caregivers who survive this journey best are those who are able to think in terms of “after” – and I expect she’s right.

    I know that this is long (are you counting, Sunshyne?), but just stick with me a little longer because I’m almost done.

    So I’m pretty much OK with things up to this point and in the immediate future, and OK with “after” – but the thing that REALLY worries me is how I would actually make a decision to place Frances in some sort of care facility if that ever became the wise thing to do, and what I would do with myself afterwards? With five acres of lawn to take care of, and plenty of home/gardening maintenance problems that I’ve been having to let slide, I’m sure I could stay busy for quite awhile, but sooner or later I know I’d find myself at loose ends with nobody to care for or share things with. I’m afraid that could be the time when things would really start to hit me, emotionally. And another issue that I’ll probably have a hard time dealing with later on will be letting go of this home place that Frances and I have so much of ourselves invested in. She helped me lay the hardwood floors in the house and did much of the interior painting, helped me set the big 6x8 barn timbers and nailed every board in the loft, and did virtually all of the original landscaping and subsequent tending of flower beds. Her imprint is everywhere. She’s beyond noticing that my son and I have already played hob with some of her interior decorating in the process of uncluttering things for her safety and making a bachelor apartment for him. I just wish she’d agreed to cremation so I could spread some of her ashes here later on, but her expressed preference is for burial. And with this sad confession I’ll end – I spent much of yesterday on my computer, assembling into one folder, photos of Frances that we’ll possibly wish to display at her memorial service, whenever that is. The old engineer still looking ahead and problem solving a dreary task that would otherwise have to be dealt with at a more stressful time later on…..
    Gourdchipper, it sounds like you have been doing a fantastic job. You might ask at her hairdresser if she would consider
    coming to your home to do her hair. If it is not too far away. I used to have a hairdresser come to the house a few years
    ago after my Mom had surgery. The past 2 years I cut it myself and kept it short and it blowed dry pretty nice.

    I know right now of 3 hairdressers within 2 miles of my house who would come to my home for illness. Best is one who doesn't have a full schedule and can work it in. I also know 1 nail person who would come. If you decide to cut it yourself I have 1 suggestions. Go to a hair supply house and purchase a pair of barber sissors and a cape. You can make do without the cape but that will make cleanup much easier. The sissors are not an option.

    We also have a new home which I directed the landscaping and design. It will be too big for me when I am alone but
    I really would like to stay here and I have a daughter living next door. So, I fully understand.

    With Hospice help you may be surprised at how well you can do with her still at home. Why don't you call them NOW for a evaluation and I imagine they would sign her on. Then, have the aide come 5 days a week to do her shower/bath and maybe hire someone or your son to stay with her while you get out and pursue some of your hobbies. It will be a lot
    cheaper to do that then pay for a NH and won't burn you out so fast. Their services are free and they will keep her on as long as she is progressing.

    Thank you for sharing and I wish you well. You have lots of support here on this site. Actually, I am addicted to this site, much like my grandchildren are addicted to text mail on their cell phones. Good Luck
    Gourdchipper, your comments almost exactly parallel mine. DW and I have been married for 54½ years, and dated for 8 years before that. About the only difference is that our kids all live away - Massachusetts, Chicago, and San Francisco(we live in Maine) so I don't have that kind of help. She does go to day care 3 days a week. I'm considering hospice, but am not sure when.

    I could write a lot more, but for some reason have been very tired today. I haven't accomplished anything, and actually fell asleep in my chair this afternoon.
    • CommentAuthorbriegull*
    • CommentTimeJan 8th 2009
    It just does wear us out, doesn't it! I was dozing while my husband went to the bathroom before going to bed. THis always takes a long time and he always is very vocal about how he can't do one thing or another; I just sat in his recliner and fell asleep. Took me a few minutes to get back to reality when his shouting rose in pitch. I agree, so much of what Gourdchipper has said. We've been married for 52 years. One does learn to cope, pretty much. Doesn't mean we like it, doesn't mean we don't anticipate the future, but here we are!
    Gourdchipper, you really poured your heart out and that was good for you and for us. So many things you said, the rest of us could have also written. We do understand your feelings. I especially feel what you are feeling about leaving your home. We, too, have 4 acres of land with this house. My DH will not be able to keep up the grounds much longer but this is home and we don't want to leave. Like you, we have put so much of ourselves into this place.

    Thank you so much for sharing your deepest feelings. You're a great guy.
    • CommentAuthorAdmin
    • CommentTimeJan 8th 2009

    Your story mesmermized me. I thank you from the bottom of my heart for sharing your thoughts and feelings with us. As I said in the blog, and Marsh validated, it is so helpful to know that others are feeling the same emotions as us.

    • CommentAuthordivvi*
    • CommentTimeJan 8th 2009
    Gourdchipper, i agree you are one heck of a guy dealing with all the emotional traumas of AD and what that entails. your DW is very fortunate in every aspect. may i also congratulate your yrs of marriage!! my parents celebrated 60yrs too then my dear dad passed in -06 of infarct. your story is like many here and your lonliness is parallell to all of ours who travel this disease regardless of age . our partners are robbed from us and our twilight yrs are not what we expected. I am sure you will accomplish the things you strive for while on this journey and know that most of us feel exactly as you do. thats what makes this group so important, sharing of feelings and lifes shortchanges give us a mutual bond..thanks for sharing, Divvi
    • CommentAuthorSunshyne
    • CommentTimeJan 8th 2009 edited
    It is very interesting that we spend a lot of time on this site offering each other helpful tips on this web site, and the members on "the other site" spent a lot of time talking about their feelings ... yet the other site seems to be much more oriented toward problem-solving, as Gourdchipper said, to the point it feels almost impersonal at times, while this site seems to be much more oriented toward ... what word am I searching for, human-ness? There is just such a very different atmosphere here, even though the subject matter is very much the same. I wonder why that is. Is it because this is a much smaller group, and so we know each other better? Or is it perhaps because we expect, have it hard-wired into us, to lose our parents and grandparents as we get older, it's the natural course of things ... but losing a spouse is losing half of yourself? Or, maybe, that the caregivers "over there" have typically been living apart from their parents/grandparents, and there is a natural resistance to moving back with them, whereas here the resistance is so much against being separated from our spouses?
    Sunshyne, I think it is mostly the difference you pointed out, between caring for a parent vs caring for a spouse. During the years I was caring for my Mother she was 90 and wasn't interested in going and doing things, etc. and I still had my DH here sharing some in her care. After she died I still had him here. I know when he is gone I will be alone.