Some years back, when DH and I were just starting on this journey, I thought it was very strange to have to discuss my spouse's terminal medical condition with doctors (not to mention family and friends, lawyers, bankers, etc…) and remain perfectly calm and dry-eyed. After years of doing it, it still feels like an unnatural act.
It's not that I want to cry every time I talk about it. In fact, I rarely do. (Okay, I admit that doing the whole pre-arrangement thing at the funeral home did break through this calm demeanor somewhat.) But it seems really strange that everybody expects us to be so business-like about all of this. It feels unnatural to talk about this with the same level of personal disconnection that you would have if you were just talking about a problem with your car's engine or a question about your taxes. Sometimes I would like to have a sizeable case of hysterics just to remind someone what we are actually talking about.
Okay, guess I'm just having a bad day. Or has anyone else had thoughts like this?
Jan-very interesting question. My FTD husband's extreme rages took me so by surprise that my emotions were blunted to keep me in survival mode. By the time I got things sorted out I had lost the man I loved. In his place was a man I will care for, but with whom I no longer have an emotional attachment. I didn't cry often, either. Recently I lost two very much loved pets. I sobbed loudly and went through many boxes of tissues. I think part of my extreme grieving was the grief I feel for my lost marriage that is finally coming out. And no-the crying wasn't a cleansing experience. The emptiness remains.
I think Bluedaze stated the main point - survival mode. I rarely cry anymore (I did my share of hysterics and sobbing when I realized the husband I loved wasn't coming back). I keep it all in the background behind a steel door. It allows me to go about my business of taking care of Sid and everything else, including doctors, lawyers, etc.
I don't cry anymore about my husband but I do at any sentimental movie or book. I can discuss my husband's disease calmly unless the other person starts to tear up and then I do too. I am also calm while speaking to doctors and other healthcare people about him.
Early on in this journey w/DH, I told our doc that I was confused about my thoughts. On the one hand I was devestated by what was happening and on the other hand, I could still feel good about things. I remember bouts of crying, screaming to the air, 'just give me back my life,' and yet, for the most part, I was OK. Why wasn't I upset all the time? My life was spiraling out of control, but I still felt in control. The doc was a man who knew me well over many yers and he said, 'Betty, you think globally.' I took that phrase out of the office with me and never asked him what it meant. Maybe one of our docs can explain it now. Doesn't everyone think globally? Eventually I came to develop my own ideas about it. Do we even have control over how we think? Because of AD and other things, I have come to believe that I often see things differently, I am more inclined to see both sides of an issue than most--gets me into trouble politically, etc.
But to answer Jan-- There were times when I felt people believed I didn't really care. When DH died, I acted like I was at a party at his funeral. I gave the eulogy with very little tears, people said 'how could you do that, I never could?' I was so prepared after 10 yrs of CG I could hardly wait to tell the world about my sweet love. Part of it is cultural from family to family, from country to country, but I know I came to a conclusion one day about myself--this is who I am. Tears are not an indication of the depth of our sorrow, sometimes I've seen others and I think much of it is a show. "Look at poor me, how dramatic it all is." There will never be words or enough tears to describe the horror of what AD did to my beloved, I don't have to display to anyone how I feel about it. I live comfortably with that, I hope Jan will, too.
I haven't cried and am calm, even at moments of crisis (when dh went missing after a movie downtown or riding his bike home in the rain, during his rages in an earlier stage, or Sunday when we were out cycling and he refused to continue in the right direction to get home; he kept going the wrong way). Lately I've had some moments, glimpsing the future when I've felt a bit of what it might be like to get really depressed. But spring has come, beautiful day outdoors today, dh is more manageable than not, still able to do lots of things, in spite of constant decline. In fact when people commisserate with me and say how hard it must be for me (the standard reaction around here, it seems) I almost feel like saying that it's not too bad so far. I've always been the accepting type, I think.
I've often wondered if it is "normal" for me to be so calm with all the ups and downs of this terrible disease. I haven't cried either. Then, I didn't cry when my Dad died, nor at his funeral. I did cry at my DH's best friends funeral! Go figure. And I cry at certain movies - so it isn't that I can't cry. I agree with Jeanette, that "it's not too bad so far." And I've always been the accepting type too.
As far as my husband goes, it's not been too bad so far and he still kisses me goodnight and says goodnight, sweet.
But when my mother died, I was 19 (I'm 74 now) and I did not cry after the first few hysterical minutes (she died during an operation so I wasn't expecting it). And for many years I couldn't cry when thinking about her. But other things - loss of a pet, a sad movie, whatever, would give me a "good cry." Which I very much needed.
I am so calm it is not real. I think I could not operate this business if I fall apart. Someone has to be calm. I think it is not healthy, but what am I to do?
I have thought about this too..so I am not nutty after all. I think there is so much work and so much to think about regarding how to manage other events as they pop up that we tend to be more clinical when talking to others about how things are. The other day, while at the cardiologist, DH's doc came out and when he said " Hi How are you?" I just said " tired just tired". My view is if someone doesn't really want to know how I feel, don't ask. It is when I see our neighbors, an elderly couple, going on their morning walk together, or see the couples of all ages at church, something like that that I get chewed up inside..remembering the things we no longer can do together for the simple reason DH does not have the strength..if it isn't the neuropathy in his feet that slow him down, it is the shortness of breath or both... I don't think I get so depressed as I do discouraged at all the demands I face.
Today our neighbor took DH out to lunch to celebrate his birthday which is tomorrow. It gave me some time to do somethings here at home and make some calls to set up some more appointments. He had a good time..he even got one of those cupcake birthday and candle complete with a round of happy birthday to you...
In my case, perhaps "living for two" doesn't leave much time or energy for hysteria. It's not due to lack of sadness or seriousness of the situation; it's just that there's so much to get done. Perhaps that's a good thing--all the responsibility is serving as a distraction--not much time to sit and feel sorry for myself.
I like Mimi's last sentence too. Lots of "auto pilot" going on. I have had two people tell me in the last couple of weeks that they are amazed at how strong I am. It's more like disbelief sometime. Like yesterday, when for the first time my husband couldn't write out his full signature.
I do not cry either. I think I'm afraid that if I start, I will not stop. Sometimes I wonder if people think maybe I'm just a cold person but I can't afford to cry and wallow in self pity. I have too much to do taking care of my dh.
Dog, Boy, do I understand what it is like to see your spouse not be able to write his name. I asked my mom, when she was in this disease to write her name. She had a beautiful handwriting...Palmer method all the way..she could not get past Mrs. JE..........
I have taken note, since my husband's TIA how it has changed. It changed right after the tia and more since then.... Today is his birthday..and so far he is up on the step..enjoying his day. Not much confusion and fewer questions. I am glad he seems keyed in.
I should tell you he was an A-4 Skyhawk driver, flew 407 combat missions over Viet Nam, North Viet Nam and Laos.
Boy this is a right-on topic. I remember in the beginning I was not able to discuss my DH and this horrible AD without crying. But then one day, it stopped and I am totally calm and able to discuss it clinically. In reading all of the above, I guess it's a combination of acceptance, survival, or as Mimi said, numb and on auto-pilot. I've been feeling guilty about it and wondering if I have stopped loving him, which I know deep in my heart isn't true. It's just that we go through this awful period of watching our loved one disappear day by day. There's hardly anything left of the man I once knew. He was strong and virile, a Green Beret and decorated hero. There was nothing he couldn't do. Now I have this man-child who depends on me for everything. I used to feel so secure ... now I'm so in charge. I don't feel like a wife, and certainly not a lover, now I'm the person who looks after him, anticipates his moves and needs ... his care-giver. It's all so sad. I guess we're just trying to protect ourselves from as much hurt as we can, and keeping ourselves strong so we can do the best we can in a situation that will only get worse. God help us.
I think I am with Bettyhere on this one. I remain calm and am usually self-possessed. My boss has commented on it and others have also. Do I always feel this way - no, I can be driving home from a visit with him or watching a movie or reading a book and will let loose. When I am with him, I am calm, it is very rare that I lose that. My best descrpiton is that I go inside of myself and shut the emotions down until I am at a place that I can deal with them - usually long after the crisis. I can't help him and be there when he needs me if I am not in control.
I think the calm is a result of personality and survivor mode. How much of each - doesn't matter as long as I can be there for him when he needs me.
I don't cry like I used to, but I do get angry, not around anyone, not around my husband. I may slam a door harder or stomp down the stairs (DH doesn't even notice, he's usually in his room), but I feel like I want to scream. After it happens I am extremely calm but inside I'm feeling the hurt of being alone. I miss the hugs, the "I love you's. Right now, writing this, tears are coming to my eyes but there will be no sobbing, that I don't do anymore. People look at me and say they admire the way I'm handling this. "What a strong person you are," they say. Yes, I guess I'm strong. What choice do I have? When we first received the diagnosis, I was so calm. I felt, "Okay. Life hands us surprises, and why not us? We're not special, we're like everybody else. Everyone has crises in their lives. We'll handle this, just like we handled everything else that has happened through the years." But, I feel differently now. I'm feel myself getting more afraid as the different stages begin appearing and praying I'll get through them with strength. I say "I" because he doesn't seem afraid, because he doesn't seem to know what's happening to him (unless he just isn't showing it!). I pray to God I will handle this well.
He did have a great birthday! The kids called early this morning and sang Happy Birthday over the phone, then all his brothers and sisters called during the day. And his pals swooped in at 10 with a birthday cake and 80 candles ( he is nearly 20 years my senior) and they lit every one of them. I am surprised the smoke alarm didn't go off LOL and I do have a picture with the smoke! Everyone sat around and talked with him, got him to answer questions and he even told a couple of stories about his military time. Later someone came by with balloon and cards and he got a UPS gift box with some wine and goodies. And I took him out to dinner, He ate pretty well too. He always eats better when we go out then when I fix dinners..so I must be a not so hot cook..He used to do the cooking and I did the clean up..our rule was he who cooks does not do dishes and since I am picky about the kitchen that problem was an easy solve..now that is a thing of the past... But on the whole he had a really nice day. I won't even let myself think about what next year might be like.
I do have to admit, at dinner, conversation was a bit strained..rather like when you are on that first awkward date or something. Like everyone else reports, conversation really does change. It is not the same. We are lucky if any of us get any meaningful conversation.
I want to cry. I need to cry. But I can't. I've tried every sorrowful movie I can remember. Steel Magnolia's didn't do it. Terms of Endearment? Nothing. I think somewhere down deep there resides a fear that if I allow myself to start it will never end. I am so profoundly sad at the day by day departure of my DH's personality that the tears will never ever stop. I can't afford to shrivel up and cry for weeks at at time.
I do however need to show something to demonstrate to my daughters (10 & 14) that it's ok to cry. They are even on the lookout for movies for me now to do some controlled crying. That sounds like asking the volcano in Iceland to do some controlled eruptions. Shoot up ash & lava for a while but stop in time to wash your face and get to carpool on time or get into work in time to run the company my husband built.
I wish I could install a switch to turn it on and off like the ignition switches some of you have installed in the car.
I guess for today I'll just take what comes with or without tears and hope my girls know it's ok to cry even if they don't see me doing it.
Maybe it depends on whether crying has always been your thing. I've always cried a lot--for both happy and sad times--so my concern has been how to hold back the tears at times--for example, when speaking publicly about my husband's illness. I think that it has to be better long-term to let the tears flow and allow the sadness to be released.
brookhaven1, I don't think your daughters have to see you bubble up and cry oceans if that is not how you handle stress and sad events, even this terrible ordeal we here all understand so well. That does not mean to say your children do not sense your sadness. Just like our pets, our kids pick up on things which upset us too. And they see their dad decline and I would bet a million dollars they are sad too and maybe they do cry when you do not see them. It well could be that they do see how much has to be done and in their way they are trying to be strong for you. At the same time, you are showing them and teaching them how you manage really hard times with your strength though you may feel, like all of us, that we are coming undone at the seams. I think those tears will show up when you least expect it to happen and perhaps when you don't want it to happen.
I was in the grocery store today and I want to host a belated birthday dinner for my DH with just 4 close friends. When I went over the menu, one of the things he likes with his prime rib is those twice baked potatoes and when that very thought of our last dinner like that which was not so long ago, and he went and got them and now he can't I was overwhelmed with terrible sadness and sense of loss. No tears, but the sense of loss is just as real as if those tears were all over the ground. Remember, there is no right or wrong way to grieve and we are all in this phase now and it will behave like that volcano ( which means island mountain glacier in Icelandic) with eruptions at unpredictable times.
That name of the volcano kind of fits our situation... we are on this Alzheimer's Island with the Mountain of changes we see day to day and we form that Glacier of "strength" to hold it all together for as long as we can..but one day we, too , will blow.
I was one to not cry unless I was alone. As a child I would go somewhere alone and cry about the abuse I was encountering. Some time during my teens years I stuffed it down and it didn't come out until the mid 90s when I went into a deep depression. When I went to counseling I vowed to not cry but I did. I would spend the whole session trying to talk thru tears for a year. I needed that time to cry and it enabled me to make it through the next week. I think many of us are that way - we are afraid if we let the tears start they will not stop.
Then comes this disease. For the first 1 1/2 years I did not let myself cry. I was afraid he or someone else would see me and think me a whimp. (can you tell I grew up with brothers and a mom that taught us girls to be tough) I think in January I finally let myself cry. Something happened and set them off. But, I have battled to not cry since. I never know when he will notice. He is typical man in that when he sees me cry he wants to fix it - he can't and never has been able to even when he is the reason for tears in the past.
I am sure you have talked many times with your daughters about what is going on and how they feel. I would suggest journaling/keeping a diary for them. Also assure them that it is OK for them to cry for what they are loosing, what is happening to their dad and the whole family. Just because you do not cry it is OK for them and healthy if they choose to. Let them know and let yourself know it is your/their choice to cry. If they choose not to cry that is OK too.
I really wish I could cry, particularly this week, but it isn't happening...
1) County social worker confirmed there is not much help they can give us in terms of aid for any programs out there. 2) Got recommendations/options back from elder law attorney. All depressing. 3) Neuropsych couldn't even perform a proper test on my husband today as he has slipped so much. 4) Continue to wait for Social Security disability to kick in.
(Highpoint of the week was finding a good clearance price on disposable underwear at the drugstore while my husband was at the neuropsych.)
Dog, we take our high points where ever we find them. My high point seems to be walking through Big Lots. Doesn't take much to make me happy these days. Welcome to Spouse.
Dog, welcome....have a hug or two! (((((((HUGS)))))))))
Bama and I get happy during football season....her Tides and my Razorbacks! <grin>
Mimi, belated happy birthday to your husband!
You want to know calm? Here is my latest calm:
Guest came from out of town to visit for the evening. I came home from work and greeted her and my daughter and my husband. I helped my husband get up out of his recliner to walk him to the bathroom before we left to go out to dinner. Well, we got in the bathroom, in front of the toilet, I pull his pants down, and he won't let go of the towel rack and either turn around or sit down, I try coaxing, bribery...nothing works. I try to peel his fingers away while nicely saying "Honey, we need for you to go to the bathroom so we can go out to dinner. You want to go, don't you?" Well, he did. All over me, him and the floor and the bathmats. I said "Honey, why didn't you turn around?" The man who can't talk mumbled "I was wheezing" I said "You wheezed all right!" HE STARTED LAUGHING! He hasn't said a sentence or laughed in months!!! I said "it isn't funny." (with a smile on my face) My daughter, laughing outside the bathroom door said "No, it isn't."
Well, I cleaned him up and put on frest clothing, and cleaned myself up and put on clean clothing and cleaned the bathroom, and then the four of us went out to dinner - and we had a great time. (The waitress even slowed to a snail's pace so that she wouldn't get too far ahead of us. They checked with us often to see if I needed anything too. I put the food on his fork for him and he got the fork to his mouth.)
I can remember when I WOULD NOT HAVE BEEN CALM - I WOULD HAVE GOTTEN VERY UPSET AND NOT EVEN GONE OUT! I would have let my daughter and her guest go alone....see how good flexibiity works!!
This is because I have accepted that my husband is dying. I have accepted that God will take him when it is his time. I have accepted that he has no quality of life. I have accepted that he hasn't known me for two years - yet knows I'm the person he can count on to take care of him. My tears were after the diagnosis when I knew it was just a matter of time before he wouldn't know me, and that there was nothing to be done, except to love him and make his last years as comfortable as possible. Now, it is a matter of months. And I know that it will be a blessing when he is with God.
Mary, you are always a ray of sunshine on a dreary day. You inspire me. We all should remember that today is a gift and that it is why it is called the present.
Mary, I love the way you put your thoughts. I wish I could be as sensible as you are about this mess we are all in. I have accepted what is happening, but every time some new decline comes about I get mad and then I start crying. I am not mad at my dh but at the fact that the end is coming closer. Once I get over the initial shock of the new decline, I am fine and handle the problem better. No more anger or tears. I feel horrible about the way I act when I am mad but that too passes. I am just afraid my dh will remember how mad I was and how I cried and fussed.
Thanks again for sharing your wisdom and strength....
Mostly I'm calm. but when he doesn't recognize me, doesn't know who I am. It hits me. and expecially, if I'm telling someone else. Like Sometimes you need to vent, and I'll call my DD, or DS, or even a friend, and they will ask, how I'm doing, Yesterday, it just so happened that the visiting nurse called, just at the wrong time, and I couldn't calm myself, I just cried, telling her that he didn't know me. Of course, I then put him to bed for a nap, and when he woke, I was chris again. I dread waking him in the AM, I never know who I'll be. really it doesn't bother me if he doesn't know me, it's just the pain he feels. Yesterday, he told me, that I just don't understand, he can't get in touch with chris and he wants to ask her to marry him. Well, that absolutely made me cry. In fact I have tears in my eyes now, as I type it.
Bottom line is we are all basically the same. I am not a cryer, but find myself getting teary when some one is kind and helpful out of the blue..such as a repair person going that extra mile to make things work when he sees our home situation. That has happened several times lately. I am still angry, I think, and sick of cleaning up unnecessary messes.
All afternoon and evening DH was wondering where Jeanette was, and wanted me to take him to find her. I said I'm Jeanette, I'm your wife and he would say Oh, yes, that's right. But a few minutes later he would start again. He needed to go out so we went to MacDonald's for supper and then he wanted to know if I would take him to Jeanette's house. I said OK and when we got home he was OK with it and watched the news, took a bath and went to bed.
This does not really upset me anymore, it's just difficult to deal with and I feel so sorry for him because he is so unhappy.
Jeannette - You sound like such a special person. I hope I'm as brave, controlled and loving as you are when those things happen to my husband and me. At least I have this website to help me cope with such heart-rending choices.
Kathi, I too tear up when someone's nice to me.. always have, really. What kind of unnecessary messes? A lot of all this situation is figuring out how to circumvent the mess.
Jeanette, today I gave L. a chicken salad sandwich. He looked up at me sweetly and said, Thank you. You are spectacular. I said you're welcome, and hugged him and said But who AM I? And he said, I don't know... (big grin).. but you're spectacular.
I think that sometimes we get just so 'beaten down' by what we see 24/7 that emotions just leave us and flow down into some sort of black hole. Sometimes I find myself so physically and emotionally drained that it's almost as though I'm just too exhausted to even cry. But yet, at other times I can't stop myself from crying like when my wife reacts painfully to something I've said (that she has interpreted as my frustration at her lack of memory or cognition) ... or when she realizes that she can no longer do something she could easily do just weeks earlier. That's when I try to take a step back to accept that I had better enjoy each of these days as much as possible because I know they're so much better than the days that lie ahead.
To all you who have spouses that say sweet things to you - cherish it. Even if they do not know who you are they still appreciate you. I can't remember my hb ever saying the meal was good, or great job,etc. It has always been taking for granted. Sorry, he did thank me for staying by him after his affair. So enjoy what sweet talk you do get. You may not feel it but you are very blessed.