I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. Although it has been on my mind for a long time, it was very difficult for me to write. It took me a long time to decide to share these thoughts with you.
As always, I would like your honest opinion, and I welcome those different from what I have written. I think this is a subject that spouses need to discuss openly.
FYI - You will probably have to refresh the page for the blog to come up.
This is one of the hardest parts of all this. I no longer have a husband. Just in name only. The love I feel is not the same it was 5 years ago. Before the dx this past Feb. I was falling out of love with my husband. He was changing so much. Now I know why. So the loss is not the same for me. The love I have now is one for someone who needs caring. Not the love of a wife for a husband. That has been gone for a long time. Don't get me wrong, I do love my husband. And had this not happened to him and he had not changed in the last 5 years, I know I would still be deeply in love with him. But this AZ has robbed me of the deep love I had. I will stand by my man and know he does in his own way love me. It is just more like a brother/sister kind of love now.
Hence, the emotional wall that goes up. The acceptance of the never to be again, the man, the love, the future together. It is so hard to feel that the special love is gone that we fought so hard to save. But the acceptance, or the emotional wall, brings inner peace, as if the fight for the "togetherness" is over and the acceptance of what is to be (a new life for us alone) has to happen and we have to learn how to be okay with that. To me, the acceptance felt like a "relief" to me, there wasn't going to be anymore "emotional" turmoil inside, I accepted that my husband, (as the word means) was gone . I was then, his caretaker. In the end, just knowing that if my husband knew how well and with love that we took care of him to his end, he would be so proud and would feel so lucky that he had been loved so much. The road after is so difficult and lonely, because we don't know who we are, other than a partner in a loving "relationship". But we do eventually find a new life for ourselves, tho the feeling of "alone" seems to always be there. All is okay with me as long as I have peace in my heart that I am the best I can be and I have done that best that I could for the ones I love.
"How can I love him the same? Many of you write on the message boards of how much you love your spouses, as if they were the same person as before Alzheimer’s Disease. If I am deeply in love, it is with the memory of who my husband was and all we shared together."
Blue and Joyce, your answers are true for me also. We still see the body of the person we loved and who loved us. And we still have our memories of the person BEFORE that we can draw on. Sometimes we need to put those memories in the drawer to get by day-to-day. Otherwise, it is too devastating to watch them creap towards death so slowly.
Today, in replying to an e-mail dealing with the fashions on "Mad Men" for women, someone mentioned the Donna Reed wife - which I tried to emulate (for the most part successfully, along with Margaret Anderson!) in the early 1960s. The memories of our marriage and having children and how we lived our lives burst forth in flying colors. In reliving those years, even for a few minutes, brought my husband back to me. (Not the shell I have now - but the reason my love is strong enough to get me through this.)
Love can not be explained. Half of everything ever written is about love of one form or another. We all NEED love - to give it and to receive it. It makes the world go round. It makes us happy, sad, angry, jealous, thrilled and steadfast. We feel that love for our spouses or we wouldn't be at Joan's trying to cope with being a caregiver.
The Greek languauge uses three words to describe the range of meaning that our word “love” conveys.
The first word is eros, from which we get the English word ‘erotic.’ Eros expresses sexual love or the feelings of arousal that are shared between people who are physically attracted to one another.
The second Greek word for love is phileo, which speaks more of the warm affection shared between family or friends. Whereas eros is more closely associated with the libido, phileo can be more associated with the emotions. We feel love for our friends and family, obviously not in the eros sense, but a love that motivates us to want to treat them kindly and help them succeed.
Different from both of these is the third Greek word for love, agapao; it is a self-sacrificing love. It is the love that moves people into action and looks out for the well-being of others, no matter the personal cost. It is the love that focuses on the will, not the emotions or libido.
Dealing with this disease, I think our love transforms as time goes on - from eros to phileo, and ultimately to agapao.
Even if this mistress AD was not in the mix, over time for many, but not for all, love or the demonstration of it changes. Even for young married it changes..at first there is the fireworks and all that goes through looking through rose colored glasses..there is all the hopes and dreams.
Then a few years go by, kids maybe or not, bills or not, whatever, and the couple settles in and love is still there but there is clarity..life gets real..and yes there are times of fireworks and all that passion but somehow things do change even then.
So here we all are with our spouse, that special someone that we married several years ago, maybe even a lifetime ago by some standards..we still love the person but when health issues crop up..say ED or viceversa for ladies, or heart disease, etc, not a memory issue, the situation changes and love for one another is expressed in different but not less meaningful ways...the little flower that shows up, or the pint if ice cream you love, some little thing that says I L U...
For me, it has been this way for a number of years since the hubby had diabetes way back and that had given him the ED thing..However, over the years and even now he demonstrates how much he love me and trusts me and there is great satisfaction and reward in that.
I guess love in the end is what you make it to be when these changes , which we have no control over, happen. Sure I miss the flowers now, and the surprise bear claw from the store..but now I bring him the flowers and the treat..turn about is fair play..he loves it, lights up and the smile and joy it brings him is priceless.
Thank you so much for this blog. I could kiss you! I have been feeling guilty about not loving my husband because I feel like I don't have a husband so how can I love him? We have only been married for 14 years and have overcome one problem after another within our marriage and not had that many wonderful memories to fall back on and I hate the fact that I can't draw on a lot of past good experiences to keep me going. I did fall in love with him for particular reasons like you said and those reasons are not there anymore. I feel like I am just taking care of him because I use to love him and I am not and never have thought of divorce as an option(unless there is severe abuse). It tears me up inside too and you are right, the only people that would ever even begin to understand how I feel are the people on this website and that is why I love all of you so much even though I have never met any of you. Thank you, thank you, thank you!!!
Next week is "National Assisted Living Week". The retirement Inn we live in has asked for pictures of us in younger years for a contest to see how many we can identify. I looked back over the slide show we made for our 50th wedding anniversary (6 years ago). It starts with DW and me at age 1. Then goes to highschool prom and college proms. Looking at this sure brought back memories of all the wonderful things we have done over the past 65 years (we started Sophomore year in highschool), and reminded me of the love I had, and still have, for my wife. That love is different now than in highschool - less eros and more agapao - but the love is still there. I'm sure my wife still feels some of this, although she can't express it well. She does occasionally tell that I am "wonderful". One of the early personality changes she developed with AD was to become more affectionate. When I told my doctor about this he said "be thankful for small favors".
At this point, love=just doing what needs to be done with--as often as I can muster--a smile on my face.
As far as feelings go, they are what they are. Love has to be the act, not the feeling. Sometimes I cringe at the person occupying the body that used to house my husband. Not because he's an awful person. Actually, he's a decent person with a puerile sense of humor and little ability to comprehend anything I say. But, the fact that he's there instead of the guy I married continues to creep me out sometimes. So I have to do the things which love requires, while not feeling anything resembling what I used to feel. Just grief.
for myself i guess i would say its more of a 'metaphysical' type of love at this point -beyond this world and out of touch of immediate senses - but out there on a parallell plane somewhere tangible only by memory.
the irony is we come in this world as one and go out as one- but most of us live as 'two' with a chosen person the rest of our lives inbetween. we try to find a balance within to allow ourselves to get thru this with the minimum duress. i think any of us could write a thesis about the 'living dead'. it could refer to the AD patient at times then again revert back to us as caregivers. sometimes i wonder which of us has it the worst, the afflicted spouse or the non ill one left behind.
by the time you are end stage love is survival. divvi
Joan, I can see why you struggled over whether or not you should share these innermost thoughts. But as with so much you have written since I discovered your site a little more than a year ago, what you have written is so true. You have captured some definite 'truths' about love with a spouse declining with AD. But at the same time, in my situation the person I married is still 'in there' at selected times and our relationship can be as it once always was. These selected times don't usually last too long anymore and, sadly, these times are appearing less often. Weeks or months from now I might respond quite differently to what you wrote. But for now, I just want to concentrate on enjoying those times when there is still 'enough' of the person I fell in love with to allow me to love her and be with her as the person I fell in love with 45 years ago!
We apply the word "love" to any person, place, or thing which holds appeal for us. I love my home, my daughter, ands chocolate. But I am not "in love" with them. Being "in love"--sharing those very special feelings-- was reserved for DH. But, as is true of all love, the feelings grow and change with time, events, and outside influuences. My love for DH now more closely resembles a parent's love for their child, but with a touch of warmth remaining from having been "in love" with him. No longer being "in love" with DH is not a negaive either. The VaD has left no place for that love and trying to keep it alive hurts. It's okay because the love I have for him now, is the love he needs. Love< I discovered is living thing--growing, changing, maturing, as our needs do.
Really good topic. My response is somewhat like acvann's--that my husband is still there to some degree. No, he can't manage our finances, do our taxes, fix things around the house, take care of the cars, etc. like he once did; he can't discuss world events, politics or even tv shows or movies; can't participate in making decisions. But more importantly, he can tell me he loves me, show affection, ask if he can help me, and be generally sweet. So yes, his intellect is gone, but his emotions and the ability to express them are still there. For now, that's enough for me.
I think marilyninMD described my relationship with my husband. He still shows some of the caring that he always did. He always wanted to "take care of me." One thing that is so touching and sweet...when we sit down to eat, each with their plate, he always looks at me and says "you can have some of mine." I have no idea why he thinks he should share his food unless it goes back to the theme of "caring for me." I just went back and read that poem posted by Audrey entitled "Still" and I cried again!! That poem is so touching and says so much about how I feel towards this man that lives with me. This man I love. This man that needs my care. This man that "Still" has that caring for me somewhere in his mind..or heart..I think there is still love there. He tells me often that he loves me and I sure tell him the same thing!
Marilyn and Jackie, you both have sort of described my DH. It's funny about the food, Jackie. Whenever we get ready to eat - I always just fill our plates most of the time - he will say "now, give me the smallest amount, you take the larger one." As you said - always caring! He tells me he loves me several times a day and I do the same also.
Marilyn & Jackie have voiced my feels also. A funny thing about the food situation. "Before" my DH didn't like to share his food with me when I would ask him for a bite of what he was eating. "Now" 9 times out of 10 he offers his food to me without me even asking for it. When people say to me that it must be hard being a caregiver in my situation my reply is,"Well in our 41 years of marriage we have been through 'for better or worse', 'for richer or poorer', & now we are into 'in sickness & in health' & I stuck by him in the first 2 I'm not going to leave him now!
This topic fits in with my thoughts yesterday. We had a showing ( our house is for sale) and had to be out of the house. It was such a pretty day I suggested a drive to a quaint,nearby town on the river, with lunch at the local inn. I noticed during our lunch if he wasn't focused on eating he was looking around for someone to engage in conversation. I tried to have conversation with him,but he had no interest. When we finished eating I suggested we drive to river front and park and sit on a bench. That didn't last long,he was more interested in killing bugs and wondering what another couple down the way was doing. I suggested we just go home,that the showing would be over. He couldn't wait to get to his chair and start his Word Search puzzle. I felt like the "invisible wife" today, perhaps she is disappearing as well and the caregiver is replacing her. It's never going to be like it was and I hate that.
What I didn't say above, is that I completely understand those who say they don't love their spouses in the same way now. In the early stage I had a taste of the personality change, and I will agree that it's hard to continue to love someone whose demeanor no longer resembles the spouse you married. Luckily for me, the man I married "came bacK" and so any estrangement feelings were temporary.
My husband also offers me his food! I had assumed it was because he has a much smaller appetite now, but after reading the other posts on this, I agree that it's an easy way for him to "take care of me". Funny thing, he had always been my protector, now he realizes (to an extent) that the situation has reversed. However, he still tries to take care of me and I tell him we take care of each other.
I love my husband for the man he was before AD. He was an active, involved, caring person. He took care of his family, worked hard, was a father who made sure our four children took responsibility and grew up to be caring involved people. Now that he is no longer that man, but one who needs us to be involved and caring for him, it is up to us to love him, care for him, and honor him. He is so dependent on my that sometimes it breaks my heart. He never deserved this. the journey has been long. We will celebrate our 50th anniversary next summer. Who knew. I think we have a long way to go and I hope I can make it. There are times I think he will outlast me. I get so tired.
My husband was like yours; we had four children; and we will celebrate our 50th anniversary next summer! I don't think my husband will be here that long though. The only way I'm making it is with in-home care to help me take care of him to the best of my ability, and to keep me from hurting my back permanently. I told him (when he still could comprehend) that I would always take care of him, and I think somewhere in his memory he still knows that, even though he doesn't know who I am....just that I am the person he can count on.
Good topic. I chime in with what carosi said above: The love I have for him now is the love he needs now.
His love for me is akin to that of a small child, who is dependent on Mom for everything and needs to stick close to her. Sometimes I think he is in the "terrible two's" exerting his independence.
I just read Joan's love blog and your comments. DH, like others here, always offered me a bite of his pie, the last sip of his coke--I never knew why, but I did know that his reason for being was to protect & care for me. We were never soul mates, more traditional male/femals stuff and for us it worked. When we were quite young, he once told me how much he loved me related to the time on a clock. Funny little thing, but now, 7 yrs after he's gone, when that time appears on a clock, I stop and chat w/him for that brief minute. Maybe that's a reason he still lives in my life, I can't stop looking at clocks! BUT I have a good life now, including a gentleman friend that does not diminish my love for DH in any way. My deepest regret is that I never understood why he behaved in such a strange way, never could answer those who asked me, "why did he say/do that?" I always thought he was distracted, worried about business, whatever--never a brain disease. But I knew he was frightened, the bravest of men, what frightened him? So I regret that I let him go thru all that terror alone w/out my understanding and love, instead being annoyed and pushing him away when he needed me the most. I long ago forgave myself for not understanding, but I knew I'd care for him, protect him, as long as I was able. I don't think love stops at a certain spot. I cannot begin to describe what I feel about him now--I know perfectly well that he's not here. Love, maybe, but, the same! If we were 20 again and normal, yeah, I'd fall all over him again, but, ye'gads, I'm 80. As troubled as AD made our marriage, I'm still glad we had it. Better to have loved and lost, then never to have loved at all.
In my case, my husband has never shown affection or loving words of any kind, I know now that it was a brain injury in his youth, that I had no knowlege of before I married him. I had reached the place, before the diagnosis of Frontal Lobe Dementia secondary to ALZ, that I had spoken to my Pastor about a divorce, if things did not change when my daughters graduated from highschool.( I had vowed to myself that nomatter how bad the marriage was I would not leave while the kids were young, unless of course it was abuse) That was the plan before the diagnois... now I feel guilty for wanting more. 22 years of a loveless marriage and I finally got the guts to think about divorce and now this. Don't misunderstand my dh was good man, just was never able to show emotion or affection, never inntiated sex, or handed out a compliment. How did we wind up married you might ask? I mistook the slience holding hands in a resturant, staring into each others eyes as love struck, not "I don't really have anything to say". 6 weeks later we were engaged,( I know don't say it "What are you nuts?") then married, then baby number one came along and well....here we are 22 years later.I write about by ALz life in my blog Sherizeee.blogspot.com. How do we love like this? One moment at a time.
Joan, one phrase in your blog jumped out at me. "In honor of the person they once were". My infant husband has nothing in common with the wonderful man I married but I honor the man that he was by loving the one that he is. He gave me 20 of the best years of my life and I know that he would have given me 20 more if he were able.
i cant imagine going thru this disease with someone i didnt really have a very strong loving marriage with. its hard enough holding it together with a strong relationship. i admire those of you who are walking the walk without that. i think it makes for a * (star) in your crown now- not after.
I read this earlier, but I had to think about my reply. I do still have a deep love for Lynn. It is not the same as it was, but it is just as deep. We lost everything that everyone else has... I lost the intimate part of our relationship. I lost my best friend, my rock, my hero, my protector, my confidant. Though of course the love just can't be the same as it was before AD, that love is still there. And now I love him even more, in different ways, for different reasons, but I haven't lost the love we once had. It is still within me.
Even far into stage 7 Lynn can and does still tell me he loves me. Every single time he sees me he puckers up for a kiss. He is lost in his own little world so much now... words are few and far between... but when he looks at me with recognition in those beautiful eyes, when he says I love you baby.... yes the love is still there. It bubbles over inside me. I am still "in love" with my husband. I will be in love with him until I draw my last breath.
Were there times when the AD devil had Lynn in it's grasp that I didn't like "him" or his actions very much? HELL YES! Were there times when I thought I would surely die from a broken heart? HELL YES! It hurts so much to lose him inch by inch and I miss, so very much, all of who he use to be, who we were together!!! But yes, when I look at him I still have that love in me. He often told me I was his whole world, and now, sadly I am. He is holding onto me in his heart, and I will hold onto to who we were for the both of us.
Mary I like this..."Different from both of these is the third Greek word for love, agapao; it is a self-sacrificing love. It is the love that moves people into action and looks out for the well-being of others, no matter the personal cost. It is the love that focuses on the will, not the emotions or libido."
Divvi, I agree!! Without the strong love we shared for so long to lean on, to give me strength, I do not think I could have survived as long as I have!
Sherizee - I am a lot like you. I have some kind of love I guess for my hb - I would have to in order to stay wouldn't I? In the early years of marriage we did have fun camping, hiking, etc. but were also going through infertility treatment. Anyone who has gone through it knows how it can kill a sexual life. When we adopted 2 kids in 1988 our marriage went downhill - what there was of it. He never bonded with the kids and later found out he only went along cause he thought that is what I wanted. What he wanted was his own bio child. I wanted kids but if I had known adopted would not work for him, I would not have gone with it. He became the absentee father and sex became just that - sex.
He has never been one to give complements, flowers, gifts or making me feel special. I stayed with him after his betrayal, as I learned 10 years later in counseling, because I felt I didn't deserve any better. Plus, when we married after 11 days everyone said it would never last - we didn't want to prove them right. So, to the outside world we had a great marriage. He was affectionate, loving in the world and at home he was 'do the work around the house and earn money' but that was it. He says he was happy and had no idea how unhappy or hurting I was. The only times he brought me flowers or gifts was when I was going through counseling in the mid 95-96 and would time his arrival at my work when there were others to see. When ED started appearing he went to the doctor once to get viagra, which didn't work, but refused to go back. I researched and found that the belief was if they had erections during their sleep it was a mental issue. I took the blame because of weight gain from being on an anti-depressant and continued to blame myself until his AD diagnosis. Now I am angry at him for letting me take the blame and beating myself up over it.
I had so hoped that when we started Workamping, being away from the stress of adult kids and their screwed up lives and my family that we could maybe build a loving relationship. It worked somewhat from 2005-6 but then after the mental/emotional abuse he took from owner and park managers in Florida it was all downhill.
If I could with a good conscience, I would walk away and leave him on his own. But, I won't because of the backlash from my family for abandoning him in his time of need. So I grudgingly stay praying constantly for the compassion to go the course of this disease and not come out bitter and angry.
Joan mentions marrying for love. I married for lust and because I vowed the next guy I had sex with would either marry me or I would kill myself. He forced himself on me and that was the options I gave myself and told him. Men have the ability to forget so much. He doesn't remember it being forcing me (you can call it gentle persuasion), doesn't remember so much of the pain in our 39 years. It has been a marriage to hell and back. It has been a platonic relationship. Sweet words are non-existent. We are a marriage where we have gone through the motions for years and no one was the wiser. I am not innocent - I can not bring myself to tell him 'I love you' and have not for a long time. He gave me a hug the other day and about fell to the floor out of shock. If he does like some spouses do here - say 'I love you', 'thank you' etc I will really get pissed.
Do I stay for love? There may be some somewhere but I stay because of obligation and feel I have no other choice. How this will change with times I don't know. I stay because after 39 years I can't rationalize leaving. And, I forgave the adultery so Biblically I have no valid reason to leave. I will use him all I can to keep traveling in the RV even though I am taking over more and more. Biggest problem is his complacency- not doing things that need done. Today I got him to go buy lightbulbs to change the 'porch' light and back-up light (it has been out for over a year). I pray the disease goes fast so I can either make a new life or try sky diving!
Charlotte- Thank you so much for letting me know I am not alone in this obligation position. I try to remember what attracted me to this this silent introverted man... And it was exactly that. I had been married before, an abusive, alcoholic, husband and an abusive father..I was actually attracted to what appeared to be the strong silent type. So it probably is not as crazy as it sounds. My current DH was also an alcoholic but the kind that would sit in the corner and fall asleep drunk. He quit cold turkey the night our first daughter was born, I am grateful for that. But I am so ashamed of hoping that I am not trapped in this place the rest of my life. I am 53 DH 67.Thanks again for the open conversation and safe place to vent. Thank you Joan!
I thank you all for the insightful comments. It often happens that when I struggle with a decision to write something so personal, I find that my thoughts are in your hearts, but no one has quite been able to express them. I am very glad that I have been the catalyst for this discussion.
I have been blessed to have had decades of a wonderful marriage, and this AD is tearing us both apart. As Divvi said, I cannot begin to imagine what it is like for those of you who have had difficult marriages. I don't think I would have the fortitude to stay.
30 comments and only 2 men. I would like to hear from more of the guys.
Love is difficult. You want the best for your mate and you are willing to give of yourself to achieve that. This self sacrafice is not with out guilt. You know at some point you need to draw a line. You are hoping that you can make it to the otherside with enough of youerself left that you can move on with your life. Love of yourself tells you to save and withold for the future. This conflict is not easy to resolve and the guilt that it carries is there to ask the question What is Love?
Mary described the different kinds of love very well so I won't attempt to do the same...For many years, my love for my husband and his for me was primarily eros in nature and we had a very good marriage. As the years of his AD progressed, my erotic love evolved into phileo mainly although I never did feel for my husband the relationship I had with my children and father and brother. The memories of our previous relationship would intrude at the most unexpected times and I would experience the long repressed feelings and then as a result would be overwhelmed with sadness . I never did evolve into agapao love as we were too connected for me to have the universal passionless regard for mankind that I see as the love of God universally. At my husband's death, I felt great affection for the person he had become but no longer could connect physically or emotionally with him. Now it has been almost a year and 3/4 since his passing and I am now remembering him once again as my mate of many years. The memories of AD are there in my mind but they are losing their strength to devastate me emotionally and I can separate the two identities of my love.
An interesting aside: I was the only one he would kiss on the lips. His daughters and others would get a kiss on the cheek. Must have still been some attraction and recognition left!!
Lynn is the same, he puckers up for a kiss many times during our visits. He kisses no one else. He allows them to kiss his cheek, but he will not kiss them. It is proof enough to me ♥
I have said in earlier posts that I have forgotten what my wife was like. lWhat we talked about, Our previous love. Some of you told me that was called "caregivers Dimentia" But I tell my kids that I now actually love Carol more now than I did before. It is an agape love and is hard to explain. But I love to be with her now and am not really happy when I'm away. It is kind of a pity love, a sad love, a guilty love, a deep love. I hope that sometime I'll regain our old memories but for now, I just want to take care of her, be with her, hold her hand, she still gives me a kiss and touches that are great. I occasionally get a smile when I first see her for the day annd that really melts my heart. She sometimes waves at me in the lounge area. I know she loves me but just can not pur it in any kind of words. Any words now are really special. I love her the way she is and know that sometime we will really be together again. I miss her so much. bill
billeld, you have a very good point. agape' love is principled love. The spouses that we once had are not there anymore but they are still our spouses. How do we and how can we have the same love that we did when we got married. It would be like having the same love we had for our spouse when we said I do but have it for a stranger. Principled love is love we have for them because of what we said I do to and not necessarily who we said I do to. We love them kind of because we are suppose to. That sounds terrible and it was weird to even type it but unfortunately what else is there!...Leaving is not an option for me.
billeld: You expressed my feeling perfectly. I feel the same way you do and experience the same emotions. However, last year when my DW was going thru the sundowners stage and had gotten so terribly mean and wanted to move out and didn't like me at all, I felt quite different. For a time, I fell 'out of love' with her and just wanted the most difficult situation I had ever encountered to go away.
Not that she is in an ALF, I love her more than I could have ever imagined. I know that it is late in the day for those feelings, but, I am thankful that she feels the same way and we can share them for the moment because that's all we have.
Dean you have been given a wonderful gift of loving your wife again as she continues on the journey. I found the same after placing my husband. When the day to day stresses of caring for him weren't there anymore, it was so much easier to see how much of the love he had for me was still there in him and respond to it. We got to have fun together again.
I feel kind of guilty for feeling this way but, therrja , I am kind of looking forward to the possibility of a better relationship because I am not taking care of my DH everyday all day. To have fun together again sounds so good to me.
I find I can enjoy having dh here much more now that he goes to day care three days. His homecoming is a happy moment and on the days when he is home I try to give him lots of attention and think of fun things to do (it's getting harder).
Bill, I love the way you describe your great love for your wife now. This touched a chord in me, I understand completely what you are saying.
My barber came to our house yesterday to trim up my husband's much too long hair. L. was very good indeed, joked with the barber, etc. When he left the barber said, he's so happy, and he obviously loves you so much. And this IS a gift I'm being given, this return to affection and happiness, after his years of being withdrawn and gloomy (I'm sure caused by his dawning awareness of dementia). of course, without dementia he wouldn't have gone through that phase!
Therrja, you said it exactly how I feel. We always had a wonderfull marriage before AD. There were times when I almost hated him then. Now that he's in a nursing home, I don't have all that stress. He still knows me and I can't wait to give him kisses and tell him how much I love him. He also does the same to me.This was my second marriage. First husband died. Jean and I have been married 26 years and I have some wonderful memories.
Thank you Joan for your wonderful and touching blog on your feelings for your DH, which I read before this page. In it you describle my feelings exactly, I feel the same as a mother does for her child. I would brave the devil to protect him, look after him to the best of my ability, but the feelings I had as a wife for him have largely gone, thanks to the AD. Sometimes I feel ashamed to hope that journey won't be too long for me to have a little time left, if I don't go first, to do some of the things I would still like to do on this earth before I depart it! I am 70, so time is surely going !! My DH is perhaps in stage 4/5, very dependent on me, and is sometimes like the whingy, nervous child described by some you above. I feel so sorry for you Charlotte for the life you have had and may God bless you. Thanks again Joan for this great blog which must have taken a long and painful time to write.
Sylvia, it's fun to see how your reading of older threads is progressing; thank you for bringing some of these ttt (to the top) for everyone and adding a new thought. Yes, there are many of us (and I know for sure that you will come across the threads!) who are hoping for what we call an AFTER. There is even a thread on which we have tried to make our "bucket lists" or AFTER lists. And believe me you are not the only one hoping that not all our good years will be used up when this caregiving journey ends -- as it must. At the same time, it is important not to entirely postpone starting your new life -- if there are things you can do now or soon, it is worth the effort to try get some respite time to keep your own life alive. AND keep in touch with friends and family.
I kind of wonder if the renewed sense of that deeper love for our LO returns to some degree after they are placed and we are no longer the bossy bad guy trying to get them to shower, eat, go for the walk, take the meds, and more..Someone else has that job so that when we come to visit we are once again on a better foundation. MY DH is not placed but this thread has got me wondering about this since sometimes he does get a touch grumpy or seems to ignore me.
joyce*.....exactly. But, try explaining THAT to any one of the kids or my husband's other family members. No one will ever "get it". To them, I am simply "evil".
Many thanks for your reply Jeanette B, it's very hard to get respite in the small country town where I live and I'm sure many others of you can relate to that. It is a second marriage (33 years) for us both, his three girls don't want to know about AZ and my daughter has a lot on her plate with her own family and her work. It is getting harder to keep any sort of other life going, as he doesn't want to go out except for his day at day care and his table manners make it impossible to have a meal out anywhere. Anyhow, I guess if there is any luck in this dreadful disease, it is that much of the time he's almost childlike in his manner and isn't abusive or anything like that, with the exception of night times when he is difficult. I hope I don't sound like a whinging Aussie, I don't mean to be !!
No Sylvia, you just sound for all the world like an AD caregiver! Yes, I know I am lucky to be in a densely populated country like Holland where everything is near at hand.
First, many great posts and very sincere so I will respond equally with Joan's request here from males and her blog on the main page.
I left my wife rings under her pillow. She would eventually put her head on the pillow and react and pull out the little box. Never on an occassion. Always unexpected. I brought home flowers. To this day I may pick up a bouqet when shopping and until a year ago she would cut them and place them around. We met in high school. She never asked for anything. I always bought her the better cars. We both worked and she liked sedans and I like a stick shift. Her eye's would glaze over in the dealership because we were getting the metallic blue accord for her - she was so happy that she got these things without asking.
My wife is gone except for her nature and her physical presence. I'm not a typical male. I'm 6'5' and 200lbs and learned to have a strong personality but inside I have no interest in male stuff like the torque ratio of some machine or the batting average in the minor leagues of some sports guy. I think toughness and the male predilection towards display are infantile. I love to cook. I love women. I cry openly. And I won't hesitate to attack someone. No talking.
My first responsibility is to try and be myself and make that into something I can value. If I don't start there and make that the core then I believe I have already missed the mark. The next layer out is those I have responsibilites towards like family and lovers and friends. My wife is my mate. She is next out on the responsiblity/value ring. Then family where I make concessions to help make things work. Then friends where I get to choose.
We are all making choices such as this. Not everyone analyzes these things to the same degree. Other's disagreeing with my view is no threat to me and does not diminish my ideas. It invites me to examine them and no more regardless of what tone or words others choose.
No human being is aware of what they can do. Most here might agree that we are all learning something about the truth of that.
Many of the interactions in life are actually accomodations. We compromise or by our nature, smooth over, or rip up situations. That's fine unless the topic is truth. In this case about love.
The main failing of human beings is the inadequacy of our ability to be honest and see the truths of things within ourselves. The self wants it's dreams and coziness and doesn't want it proved to be ordinary or limited. The majority of people have real trouble seeing themselves and being completely forthright with ourselves about what we are and are not doing or thinking or believing.
The most liberating experience possible is to not only look inside ourselves with all the integrity and honesty we can muster and both accept and become good friends with that. We say we are entitled and even obligated to be ourselves - but the deep inner self can use a great friend that knows how to navigate outside in the physical and concious world. Become an understanding friend of what is inside. What is inside is real. And you spending time with that anyways is also real.
I'm going to make it I think. I went down so far I got really serious about answers and I realized I had to understand myself and show real love to myself (spiritually) and allow what is inside really to become concious to me. The truth is I've already lost most of her and I will lose all of her. The truth is I have a new life whether I want it or not. I have been pushed to agapao. And I know that if I resist by clinging to old realities that are no more then I am going down a harder and untrue road. I must let her go and be her protector and her nurse. I don't want to; but, inside I have to so I make myself realize that and try to do it for it's own sake. It's noble but that's not the point. Facing my life the way it really is - is the point.
What is love? I don't know. But it feels great. Well Wolf you've lost everything and life is over. Well I do say the most ridiculous things. Life is here and tomorrow has potential if I allow it. So back to basics Wolf. Feel the sun on your face, take a deep breath, and get out there in the life and the time that God gave me.
One more thing. Stop crying that the milk spilt. It spilt. If you thought it was good pick some memories to cherish in the future. If it wasn't good or was mixed then you're just as well off to be free of it. We already do the things we do. Why not learn to really be comfortable with that?
What is love? It is the sibling of spirit. They grow best in soil mixed with some hope, some enthusiasm, some truth, and some leeway we allow ourselves.
Oh yes it's all so flowery and esoteric. Bull. We live and love when we want that more than we are willing to just feel the misery and pain. Everything else is coffee clatch. Either way we pass the time.
Well said, Wolf! I love my husband for better or worse, in sickness and in health. It's not because it's what I said when I married him. It's because that is what I CHOSE to do and want to do it. I know who I am and what I want and other people's opinions, while they may be interesting, have no effect on what I want. I want to be here. I want to be with him every minute of every day. I wouldn't give that up because I might miss the smiles he has left, the hugs, the outbursts of laughter at the antics of our grandkids. What little pleasures I get are so unexpected and so spontaneous. And when he is gone, I will have "I love you to the moon and back" etched into his tombstone because that is what I've told him all along and that is how I feel even now. Faith is a wonderful tool and I get through every day no matter what it brings. Sometimes I make it on my own. Other times the Lord Himself carries me.