Hello everyone. Haven't been on line in a while. Here's my brushup: I'm seven years into early onset. She is lovely and sweet and in the severe stage. Doing it totally alone since the beginning. Deeply sad, frustrated, everything you all know. Working at my first scheduled time off with help hopefully in December.
Here is my question for you: I have managed to almost completely, block out all of the sad and painful thoughts in every moment of every single day. I don't dwell, I won't allow myself to think of what's next. Not that it matters terribly much, BUT, BUT, WHAT BECOMES OF THE MEMORIES AND PAIN THAT I'VE SO SUCESSFULLY MANAGED TO SURPESS?
soolow: Wow, what a post. They only thing I can contribute is how I handled one of the worse times in my life. In fact, until I read your post I had completely forgotten about the time in my life that I am now remembering. I am not going to tell what happened or why it happened, because I never, ever, speak of it now and haven't for years. After this time in my life I did seek professional help that really didn't help because when I would recall the thing I was trying to forget, all I could do was cry. Therefore, I realized I had to figure out how to erase the memories and pain in my own way and this is what I decided to do.
I said to myself, "self, you have to get beyond these memories, it does not serve you (meaning me) well and it has no real purpose." Therefore, I vowed to never allow the memories I didn't want to think about to enter my mind and if they did I would force myself to think about something else. To some this may sound simple and easy and to others it may sound impossible, but for me it was difficult but it worked.
No matter what brought the memories to my mind, which might have been the time of day, the time of year, certain music, certain unanswered questions, on and on, I would switch gears and FORCED myself to think of something else. The "something" else I would think about was usually something very simple but something I usually had to make a decision about. It might have been when I was going to take the car to be washed, was I going to get it waxed, was I going to buy a new pair of shoes if so what color, what was I going to fix for dinner tonight, what I needed to buy at the grocery store...on and on. It really was amazing how after several months of this personal therapy the bad memories were replaced with good memories and a bag full of unimportant decision making.
This suggestion may or may not help you, but for me it was a life saver. Not to be flip...but, I feel your pain and it is true, time heals all.
It is my thought that we suppress memories that make us sad as a way of standing firm and getting through the day to day necessities of being caregiving spouses. When "after" comes, there will no longer be that need to suppress, just so we can get by, and that will be a time we can allow ourselves to remember, regardless of what grief it churns up. Then we've got the latitude to dwell in whatever grief is left and process it. Now we're too busy being required to cope.
My chaplain felt you had to grieve to get on with your life. I have not found this to be true. I was told with time the bad memories would leave and the good would come back. This also has not happened. So many terrible years with miserable memories. I don't repress them-I just don't dwell on them.
It's the same for me, Bluedaze. You've said it exactly right. The sight of an older man in a raincoat, slightly stooped, still has the power to stop me in my tracks, until I get my breath back.
I just shut off Grumpy Old Men. My feelings are blocked by the Hoover Dam because in your phrase "I won't allow myself". Grumpy Old Men was one of our pictures. We had numerous films we watched over and over and my wife is so far gone feelings of saddness that she has no clue what a television is or can't enjoy it anymore with me happened a hundred years ago.
But this time it got the better of me and tears started becoming a tsunami before I walled it off.
Those feelings are real and they're in there doing things to us (probably making us have angry thoughts about safe things to get angry about) and one day they're going to have to come out or we can start kissing our ability to have natural emotions goodbye.
Perhaps with Judith and certainly with some of us, something might have happened which is extremely painful and there are memories which the better defense is to seal them and put other things around them to help us continue. Combat stress disorder is an example where things we witnessed or did, have very serious power on our psyche and need to be be walled.
I believe that emotion from loss such as this is somewhat different and we should have respect that when it brings us to our knees in anguish which it will if we are to have a chance of real acceptance eventually, then we must somewhere allow that dam to break. I regret that in this I don't take my own advice and when it begins to overcome me I shut it back off. One day it will, or worse my learned emotionless state will become entrenched. That's a very high price to pay to avoid showing myself my own pain so that I can continue to feel strong.
Since this is a case of the deaf speaking to the deaf, I might as well practise my typing.
Wolf is right. Suppressing the negative emotions eventually can cause all kinds of healthproblems--physical, mental, or emotional. Our emotions are expressions of our feelings and attitudes. By experience, I learned it is way better to channel them and get them out, causing no true harm. I've forgotten who, but someone goes out and throws old dishes at a tree. I'vbe made a hugh crashing production of emptying pan cupboards to clean and straighten them. Somethinbg physical to burn out the anger. Even giving in to a total washolut cryoing pity party can clear the negative chemicals and leave you tired but mopre peaceful.
By not doing the things I've just described, just shutting thenegative away, I ended upwith Clinical Depression and a bit more than a year of meds and counseling to treatm that, as the Caregiving DH continued. I know I don't channel the negative away as much as I should. It doesn't come naturally. But in the last 15 years I haven't fallen back into Depression, and my other streess related issues are under control.
Carosi, I think it is Nikki who throws old dishes at a tree. If you were to visit me now, I could take you out to the garage on the lane and show you my graveyard of broken plates. Every once in awhile, I'll still take a hammer and go out and smash one of the fragments even smaller. It's a great way to let it out frustration. Yes, I'm still dealing with leftovers. The will should be settled in Feb.
Hi there. I've dropped in for a dose of wisdom. I'm a kind of tough, thick skinned guy and several of you caused me to tear. First, I am so glad I came here a month or two ago. I could never imagine finding this wisdom from those around me in daily life. This question just up and slapped me this morning while doing dishes. To avoid the pain of losing my wife, the pain of having to give up the life-style we built and endure a shockingly simple existance in order to get through this, I have immersed myself in self indulgent hobbies (as time permits). These are silly things but I allow my self to look forward to the next chance to enjoy it. When a hurtful thought tires to corral me, I turn to my hobby thoughts. These artificial diversions seem to be freeing me from the truth in our life now. I've also been going to a fitness gym. I work out hard for one hour appx 3-4 days a week. I'm tired at the end and the fight has left me for the time being. Unexpected, the exercise has really helped my general well being. Been 7 months now.
I've said all that to say this. It struck me this a.m. because I've avoided so much and will continue to by playing these games, that I wondered would there be an equal reaction one day to the sheer weight of things that I work at not thinking about. I understand what will happen will happen but a part of me thought that perhaps in the wisdom of others I might lessen the "after effect" of all this avoidence. There is so much love and hurt watching this brilliant, lovely woman melt away I can't fathom a pound for pound resurfacing of all this avoided pain one day. So I asked.
Bluedaze: Perhaps we'd agree in that we (collectively) grieve everyday over and over. I sometimes see myself in the imaginary funeral one day, empty of trears. I've been clinically depressed so long that I'm used to being numb. I must think more about your thoughts and learn.
Wolf: It's the "they have to come out" part the concerns me and thus this public inquiry. I'm not unique but I'm avoiding an awful lot of human emotion, just so I can get by and not dissolve. No kidding here, I'm sure you know. I've driven myself to emergency several times when the sheer emotional weight left me ready to pass out. I'm no whimp and this is, as we all know heavy stuff. I'm hoping for an "after life" in this world and don't want to crash after having survived this. If I need to break things in private as Carosi tells with the dishes I'd try it.
JudithKb: Your thoughts lead me to believe that I'll just keep distracting myself once this is all over whenever the painful decides to arise. I understand I can't figure it all out now. . .for then; I get that but again I'm finding things to consider in each of these postings.
I'm so grateful. I hope to be helpful on this website to return the favor. I'm going to study all your comments for a while to come. Thanks to all, and those yet to post.
To all of you: one thing I learned some years ago, is that our mind/thoughts are not always our friend. Once I truly realized this, I found my subconscience began to stop tormenting me. I honestly do not trust my sub-conscience as it has been so hurtful to me over the years. I used to say to my mind when it tormented me (kind of like Judithkb) "Hey! Why are you trying to sabatoge me? We're supposed to be in this together! For me this helped to quiet the noise.
soo low---Your exercise days are a way to exhaust the stress of the negative. Your "hobby thoughts" are an escape, a buffer to get through the times when you can't otherwise unload. I do that too. I bet we all do, in one way or another. IMHO the bottom line is that we all must find the best way for us (individually) to off load the negatives we have to deal with, whether through counseling, meds, physical activity, etc. but also by, accepting help; getting help in; and arranging respite time. I've been told it can take 2-3 people on each shift in a NH to do what we're doing at home, essentially alone. And each of those 6-9 people only do it for 8 hours and then they can leave.
I'm finding that nothing is written in stone. My resolve is to see DH through but how I do it will change in order to see that the quality of his care remains good. I will lose him. But he will go in dignity, with love. I will survive. That's the way of it.
I find myself often saying "I will cry when this is over". Both DH and DD get very upset when I cry. I am their rock. If I am lost we are all lost. So if I need to cry I will do it at night or in the bathroom or tell myself I will cry when this is over. But not sure if I will have the energy to do it then. My life now is still not as hard as many of you. So I try to count my blessings when I get down. I guess we all have ways to cope.....sad we have to find them....
Talking about memories. I hope you don’t mind that this is a bit off the actual topic, but it’s gotten to the point where I actually wonder if we had a good marriage. I can’t even remember what he was like “before”. I can’t remember what it was like to be able to come & go as I please without having to ask someone to take care of him. I can’t remember what it was like having help to do the basic things around the house. I’m losing all the memories of “BEFORE!” I know that we have talked here about how our love has changed towards our LO’s, but sometimes I wonder if I even love him at all. I hope that doesn’t sound as terrible as it sounds (?). At this point in time he is so clingy that he has to know where I am all the time. He is constantly telling me that he loves me & wants to hug me & I know I should be thankful that he can still do those things, but it is driving me crazy. Of course it’s not only that. It’s also the fact that he is in a decline right now & it’s probably my emotional defense mechanism kicking in. What is the phrase? Emotional divorce? I feel so unfeeling & cold towards him & I HATE it.
ElaineH it isn't easy to remember the good times when you are caught up in constant caregiving and the heartache that goes with it. You are a good person in self protection mode.
I find myself coming back to read the posts on this topic over and over....and getting comfort from each of them, because I can strongly identify with each one. Thank you soolow for starting this topic...I wonder what happens to all the memories I have forced myself to suppress also....Please God, help me to retrieve them someday! Just not yet....too painful...much healthier(?) this way. Or maybe not...yes, it is self protection. And we must stay strong, musn't we? The Hoover Dam, immersing myself in other thoughts and activities, whatever works at that moment. I don't know...I cried so much in the beginning when we first got the diagnosis, and now sometimes I feel like I've forgotten how to cry, and sometimes it's like my subconscious self is saying that it's because I don't care anymore, and that is why I have "removed" myself from this whole situation. I know that's not true....I married my soul mate...at least he WAS at one time...
ElaineH, not everyone here on this site has had a good marriage. Some have stayed because there was no one else who would take care of their spouse. Then it becomes a duty but one that has its own rewards, knowing that you stepped up to the plate. It becomes a different kind of love, but not one that has a lot of good memories of the past, either with, or without, dementia. I'm often aware that if I would let myself, I would know that my husband had loved me. At the same time, I have to qualify that by saying, "as best he could." Some people are not able to love in a complete or healthy way - for different reasons - and that's life. Some could say, "well, you chose him," and yes, I did. I'll extend the same tolerance to myself and say, "I was programmed to expect that this was normal to be treated this way by a husband." The younger women, with more savvy, are freer to choose nowadays.
I thought this was going to be about a different topic--repressed memories in the person with dementia. My mother, who is good at repression herself, said that as my grandmother slid into dementia the nasty/sexual side that she had hidden came out. My grandmother no longer was with-it enough to repress what was socially unacceptable. I know that people can become angry or sexually inappropriate as a result of dementia when that was never in their personality before. But I know it was my grandmother's hidden side--she abused me when I was a child. I have heard a few stories of people with dementia who go back to childhood and relive abuse they experienced as a child. I don't have any clear message, I just wanted to open up this side of the topic for anyone else who might be thinking about it.
I also don't remember having a good marriage, though I think a lot of it is that my husband's ADHD shaded so gradually into the dementia and I am angry that I never got a chance to stand up for my own needs (we went right from kids at home to his diagnosis and earlier in our marriage I was working through my own healing journey).
When all this started, I cried - a lot. When I'd go to bed, I'd lie there thinking of all the things I had to do the next day, thinking about the future, thinking about so many things most of us don't really think about a lot, we just go on with our lives and take things as they come. But when you're facing life with a spouse with dementia your future is really way different than you thought it was going to be as you grow older together. We never, ever thought about dementia. Who does? We think about doing things together that we never had a chance to do before retirement and when our children were still at home. When the diagnosis of dementia came I don't remember being shocked, I remember sitting there thinking, "Oh well, it's this instead of cancer or heart disease, or anything else just as terrible." But when the dementia gets worse and you realize what your life is really going to be like, the shock hits you. I remember screaming in the shower, hitting garbage cans, punching tables (and hurting my hands) all, of course, when no one was around.
But, now, I guess I've put all of that away. There's a kind of acceptance. I don't cry anymore. Oh, my eyes fill with tears sometimes, but never out and out crying or screaming. I go about doing what I have to do and really not complaining very much. I don't complain to my children. I don't complain to my friends. I really don't complain to anyone. Again, I just do what I have to do. For instance, I spent all day trying to figure out where to put our checking account and other bank accounts now that our bank has gone under for the second time. I try to talk to my DH about it, trying to go over all the particulars of what I have to do, such as having to notify our direct deposits, etc., expecting him to help me, all the time knowing he can't. As a matter of fact, he was annoyed because I was bothering him as he was doing the puzzle in the Sunday paper comic section! Imagine... All the times I have to do whatever he wants when he wants it to avoid getting him angry. But, I just accepted it! No getting angry, or sad, or anything. It's just the way it is. Maybe in the future I'll have some ill effects from keeping it all in. Maybe. But, for now, it's just better for me to accept what my life has become. Wishing for the "way it was" isn't something I'll ever do again. Not ever.
We have seen here that everyone deals differently. For many they are able to let it roll off their back and move on to the next without ever having to deal with it again. Others, like me, stuff it and someday will have to deal with it. It might not be one instance/loss to deal with, but the culmination of it all piled together. When I went through abuse counseling I saw my counselor every week for 1 1/2 hours. I cried the majority of that time. I would focus on one spot, go into the dark tunnel and the pain would pour out. This went on for a year and then she said it was time to move on. I had to decide to stay there in that dark hole or move out - decide which side of the fence I wanted to be on. it was terrifying cause I had lived with that pain for over 45 years. Little did I know that the time was coming - again- when I have to stuff again.
I think as time goes by many of the things I stuff will not affect me cause they were minor compared to what is to come. But, as with every loss, there is a time to grieve. As I had to do in my abuse counseling - grieving each loss - so will I hear. To the degree is yet to be determined.
As for repressed in my hb - he basically has not changed in moods. He still does not tell me he loves me nor is affectionate. He still does not share what is going on inside of him probably cause he has always been detached. My sister who had the stroke almost two years ago - well she has changed. She is now nasty and mean - something she was not in the past. My mother had a period where she was nasty and mean. In the early stages my FIL kissed me inappropriately one time we were leaving after a visit. I knew then something was wrong .
Carosi: I admire your resolve. I'll draw strenght from it. I know I'll keep doing the right thing. Just not feeling it today.
Bev: I moved to Minnesota because that is where my wife was born, and has sort of family, that's useless. So I'm seriously alone with no time to give to others. As I read your post, with your friends I'm hoping there must be one that you can just spill to? Even as a man, I've been so lonesome for so long I crave the opportunity to just lay it out to someone just for my own apeasement. It's not going to happen here so like Charlotte, I'm stuffing a lot and thus the topic of this thread. One day, I hope that those of us that want to can be free of the tears and pain can go on without the stuffing coming out.
Pamsc: The irony of this disease. I moved to Minnesota primarily because my wifes 91 year old, healthy mother was the only one that wanted us to be near so she could help. Wouldn't you know, my wife's old memories of her mother being mean to her as a child (her father was sweet) and now my wife does not want anything to do with her mother; my only hope of some relief! I'm hoping you'll be able to embelish your needs at some time. Think we all deserve that-eventually.
Mary 75: Your words reminded me of how much I had forgotten about our relationship. I was a loyal dutiful husband, not always 100% in the game, but always true. Now the demand exceed all that devotion. Something crossed my mind the other day about honoring our vows. We had a very good marriage, but now the love has become so much duty that the love part is indistinct and flickering. When this is done, I will be able to say proudly, " I gave it my all" and now I need a drink! Mary, it seems as though your husband was lucky to find someone as true and devoted as you. I understand.
Bella: Just re-read your comments. You deserve a response. Wondering how long this process has been for you? Your comment" forgoten how to cry" hit home. I've been clinically depressed for so long I can't tell where the tears have gone. I just chalk it up to skimming along the bottom of the "ocean of tears"; no need because we are swimming in them. I thought the other day how to an outsider how "soft" we must all seem, laying this stuff out like this. And yet I find it very profound and therapudic. I've stopped going to the support group as there is a much deeper level on connection here. In a way, like you, my first attraction and desire was to be a friend to that woman who would become my wife. Her mind was to me her greatest asset and to see her most men would have disagreed. In anycase I think often how ironic it is that the part of her that was so attractive to me was the first to go. I haven't said soulmate as you have but I think that is what it was. I'm thinking and hoping that one day, we survivors will be able to pluck at the good mems as we choose.
My husband was diagnosed in March 2006, but by then he had progressed quite a bit...he was very good at hiding some of his symptoms, and denied anything was wrong when the kids and I first started suspecting something; it took some time to get him to agree to a Dr. visit. He is now probably stage 6...needs a lot of help with ADLs, eating, he holds my hand for guidance when he walks anywhere...even in our home sometime...he does have visual agnosia, but also cannot remember the location of various rooms in the house. He retired from his job in Oct. 2006, struggling much more than he let on. We have been married 34 yrs. Thankfully he still knows me and the kids and granddaughter,and other family members; can still express his love for all of us. But the part of him that really won me over all those years ago....that is pretty well gone...we connected on such a deep level and shared so many thoughts and dreams and our fears. Now it is very difficult for him to say what he is thinking...but you know, maybe because of our deep connection I am able many times to almost read his mind and help him express himself. This is both gratifying and heartbreaking at the same time. I do agree with you soolow, that this place of Joan's we all come to is much more supportive and helpful in letting out these feelings we all have and need to express.
Bella, what beautiful words, yours is a bountiful heart. Your story very similar to mine I am just one stage behind you. You give me hope that he'll remember me next Thanksgiving :) for that is what I am grateful each year at this time ......that my hubby knows me.
Soolow: "Her mind was to me her greatest asset. I think often how ironic it is that the part of her that was so attractive to me was the first to go." Boy, can I relate to that. My wife was the smartest student in our high school class, and interested in everything. She was so much fun to be with. Now there is no conversation. She talks a lot, but it doesn't make any sense.
Bella: My Barb diagnosed in 2005. Not sure what stage, only that its beginning the severe stage. She was in a drug trial, now slowly winding down. Like you, I can almost read her mind when she tries to tell something. Sometimes I pretend, agree or say we'll check that out. She does not know that she has ALZ. She is so sweet and always thanking me for everything. When one in her condition is so kind it, for me makes it extra hard. Though, everyday I feel lucky as compared to what some of our friends here are having to endure. It was all these emotions that I/we have been burying that spawned my question: what will become of all this repressed emotion. I wish you well. Your spouse is lucky. Please stay strong everyone!
Marsh: Dittos here. I get so tired of talking that I welcome the silence. If I don't speak sometimes there would be no sound. I work hard a a happy face because "they" pick up on that. I make fun and tease to lighten this heavy atmosphere. My Barb talks to herself a great deal now. I listen; it makes me sad. Thanks for talking with me/us!
soolow - I have friends and we go out together, but IF they ask me how I am or how my husband is, I get the impression that just an "okay" works. They don't ask any further questions. It's as though I might ruin the afternoon if I tell them how I really feel. And my children, one of them asks regularly, and I tell her. But I don't want to burden her with too much. Another gets upset when I tell her about her father, because she, I believe, really doesn't want to face the reality of the situation. I can count on all of them when I really need them, but they have so many problems other than mine that I truly don't want to make things even worse. I guess I'm waiting until it gets really bad; it isn't so bad right now. Plus, I have accepted this is what our life has become. I really have. I admit there are days, like today really, when I'm feeling hit hard, but that isn't so much as him as the weight of all the responsibilities on my shoulders.
Today, the presence of all the leaves on our lawn, even though I've asked our lawnkeepers to pick up all the leaves, has caused him to obsess about them. I must have answered 20 questions just this morning about the leaves and when they'll be picked up. I answered each of those questions without showing my impatience, but inside it makes my stomach churn. But, what can I really do about it?
Some would say I'm suppressing all of this and it will make me sick someday. All I know is I don't feel any better crying about it, or telling my daughters about it, or my friends. Sometimes it makes it worse. Just accepting what is is all I feel I can do. Coming to this site has made things easier, because I've learned so much from others here for the past three years. They gave me ideas I never realized, told me about elder care lawyers, how to cope, all the different things many would have to muddle through without these wonderful people here. I know I could never have managed my feelings without this site. It has helped me to cope with many things.
Bev: just read your post. I've moved to a strange town where my wife grew up. I came her because this is where it will end. Don't know what I'll do then. It's one of those things we've be talking about where I block it out. I know I should have a plan but I can't bring myself to go that route so I block it.
Your comment about "okay words". Struck me. Sometimes someone who I've come to know asks how things are going. If I get too detailed, the conversation ends. People are uncomfortable with the concept. Guess I'm different that way. I'd ask, "What is it like for you?" "How are you getting along?" "What do you do to maintain your sanity?" I wish someone, even from my own family would engage those issues. Or here is a big one. "Is there anything you need?" I suppose people couldn't bear a truthful response. Guess it's human nature not to want to know how the sausage is made. Bev, you are right. Accepting the phrase :"it is what it is" is all we can do. If we get a little something more its a bonus.
Yes Bev, I don't know what would have happened if I would not have found this site when I did.
Like soolow, I was a strong person, or at least, thought I was. But a couple of months ago, after coming home from watching my sister die, then seeing what was happening to dh, I went on a horrible sinking. It was not like a depression, more like, "oh all this time in my life, it was not what I thought it was, that happiness was only an illusion"
Having all you to relate to really brought it to a head, and I HAD TO DO OR DIE< that is the only way I can describe it.
So I think I do repress what is happening, except for the moments when it hits me and I sob and rant and pray, briefly. At least it does not last week after week, at this point anyway.
I saw that there is still happiness, and not just "down the road" But it is a happiness of accepting, and putting HIM first, that is what saved me.
Oh I am so sorry for everyones pain here, this comfort that we offer each other is so much more REAL than anything out in cyber land. We really mean it.
Yes, that is a good way to put it. When you accept what your life has become, you have a much better chance of happiness and you can deal with so much more. When you fight against it, you lose. It isn't like fighting cancer or some other physical disease. This isn't something that can be cured. You just have to deal with it. Accepting is a way to gain back your happiness, otherwise you live your life always angry, always hurt, always wishing things were different. They won't be different. They'll get worse. If you don't accept this your life will become so empty. I never feel my life is empty. I have so many good things in my life, and that's what I try to thing about. Who am I to ask why this happened to me? vThere is no answer. If you believe, and I do, then accepting and trying to make your life, and your spouse's, the best it can be is a way to happiness. I'm no angel. There are times when I'm very frightened and feel very alone. But, for the most part, I fight to make our lives as good as they can be, for the both of us.
As for friends not asking too much about my life, I've accepted that they can't accept it or they just don't get it. Maybe they're doing the best they can as well. It may be frightening to them. Maybe they think this might happen to them and they just don't want to talk about it. If they don't talk about it, they never have to deal with it.
Coco: I agree. The happiness of accepting. Very profound. It was my hope that from the wisdom of all of you that I might manage the pain. Coco, I will think on these words for some time. Bev: It's curious when I think that I have accepted it, it seems that the subconscious is working in the backround reminding me of what's been lost. And therefore I really have not. And then I fight against it. My final thoughts for all your help is that acceptance is my new target. For when I accept that her twin sister doen't call, her brother doesn't call, when my family doesn't call and what is unfolding (seven years now) is fact. Funny how I thought I had perspective and then not so much. Last two days a terrible rage has come over me. I take it outside. Saw the Dr. today and he gave me some redirection.
I've learned from this that venting is good, away from my wife, we must keep a happy face for our loved ones. And finally acceptance. Oh yes, I'll be working on that one. I wish that each of you can find it too. Been lucky to be here.
yesterday I sent an email to my naturopath regarding my thyroid medication. I told her I cycle through being bored, depression and panic. The panic comes in when I think of what lies ahead. I have to turn off the thinking of what lies ahead and go back to one day at time.
That's exactly what I do, Charlotte. I push those thoughts away. If I think about it too much, I'd go crazy. Whenever thoughts about the future come up, I have to push them away. Thinking about what lies ahead does me no good. I couldn't get through the day if I thought that way. One day at a time. That's the only way to do it. Oh, of course you have to get things in order for the future, as far as wills, etc., and that's distressing enough. But once that's finished, we have to take it one day at a time. Hopefully, it won't be as bad as we think. Hopefully, and I know this is true because I've gone through it before with another death (and, really, what is this disease but a long,slow death?) in my family, we get through the most horrible things and when we look back we wonder "How did I do it? How could I go through that without breaking? But I did. And I didn't know I could do what I did. And, for me, that's the way it's going to be this time.
I think some of you are just beginning this lonely part of your life and I know what I felt at the beginning. But, after going through it for four years now, I have come to that word "acceptance." Maybe you will, too, someday.
Trying so hard to accept, even now after 4 years it's not easy...especially after a day like today. Dh was so agitated and angry, he threatened to burn the house down...thank goodness DS was here to calm him down, or I don't know what would have happened. Dr has taken him off Aricept as it's not helping him at all, could that be what's sending him on the downward apath.... even the Resperdal this morning didn't seem to help
Bev acceptance seems so far away, today I was wishing the future would hurry up and come, but after reading the post here, I know I must try harder to accept, It's the only way through this.
Coco. I shall remember to "Do or Die'...it will be my motto, if I'm to get through this. I have papers to fill in to go on the waiting list for placement...that will be the hardest thing I'll have to do in my life, but I see DH declineing a little more every day, and the way things are going I may need that option one day soon.
I feel depression setting in on me, I want to cry but just can't.
Oh Julia I am so sad for your pain. And I do appreciate you comments on the Aricept withdrawal, I have been thinking of doing this to..but shall wait until I talk to his doctor. It might be stupid, it does make him really sleep in now, which he never used to do. I find it sad for him, but a wee break for me.
I am sad today too, yes I have done the do or die, and I have accepted that he really is in dementia.
So the really really bad pain I had a couple of months ago is not as bad. I just cannot see going there again, where I felt just absolutely hopeless, that all of life had been just a preparation for this cruel disease, and all the fun was not real.
Many days we just don't want to wake up. And I live in Hawaii, where it is so beautiful and the sun is warm everyday. I still get so sad.
I don't know about you Julia, but I think one of the biggest things to my sadness, aside from him, is the non support from supposed loved ones. It tears me up to read about others too, where even a twin sister does not call. HOW HOW HOW can they do that? Not care enough to get beyond their own pain, and reach out to ones that NEED it??
Hugs, foot rubs, cup of tea or coffee, or even something stronger, whatever it takes to lift you a bit Julia.
I agree with so many of these posts. It is very comforting to know i am not alone in my feelings. I think I'm past the the crying stage. i have also gotten to when someone asks how is DH i always say OK because I know they don't really want to know how it really is. his short term memory can be as short as a minute or less. But if there is someone he wants to seem ok with, he amazes me. right now he is out in the garage with a friend. What a nice short "break" for me. He is to the point of panic if he doesn't know where I am all the time. He is so very kind and loving and I feel bad because I have so much anger and resentment and don't feel kind and loving too. weel as I guess as we all know---one day at a time!
Coco, how can a twin be like that, I thought twins have a special bond, now what if it was her instead, I'm sure he would be there for her.
I have a son, now 50, and he doesn't seem to want to know...they live an hours drive away, it's like "out of sight, out of mind"..we're lucky to see them twice a year. My DD and younger Ds are wonderful...I would just fall apart if it wasn't for them, DD gives up her one day off a week from work, an hours drive down to give me a break. Today he is starting the day off really good, but that could change...
We'll hang onto that rope Coco real tight and get through this...((hugs )) enjoy your beautiful sunshine in Hawaii paradise and pray you have more good days than sad bad days... thank you for your cyber friendship.
mkayeb...My Dh's memory is down to a minute or so too, and so defensive all the time like a little kid.."i didn't do it". We must enjoy any breaks we can...I thought it was my duty to do it all by myself, not burden family or seek help, but if i'm to get through this I will need all the help I can get
Charlotte: Please don't think about what is to come. It nearly haunts me. I'll be totally alone in Minnesota when I've spent 50+ years in California. I won't be able to afford to go back. When my wife is gone, I'll be alone. I absolutely will not let myself think of those things. I can't and won't. It makes it harder for me. I focus on today or this/that moment. There will plenty of time to address the future just don't do it until you get there. (Just my opinion)
mkyeb: My wife, will not let me out of her sight. She thinks I'm about to leave all the time. It's been this way for the last two years.(She's 7 years in to early onset). Like your spouse, my BJ is ultra sweet and will do anythig I ask of her. Her innocense cuts to the bone. I don't feel the love, but I know it's there. It's become lost in all of the loss. I am sure that love will surface more when this is all over. I think we become locked into a tunnel of service to our spouse. I have no resentment toward her. I used to have some because I gave of so much of myself to her ways and interests long ago. But those thoughts are long gone now. My wife constantly touches me, it's like a connection for her. Strangely, I feel a deep resistance to it but I know it's only the sheer aggrevation and weight of all this. She means well.
Julia, my wife is an identical twin. The fact that her twin will just send a hundred dollar bill and a chocoate bar absolutely slays me. My BJ did everything for her. Twin or not, I'm given to believe people are people and subject to all those human faults. Her sister is lost in herself and labels and meaningless stuff. Thanks to all of you I am coming around to acceptance. I've just decided to quit thinking about all those who don't or won't or can't or whatever. I've decided I don't have time for them any longer. I no longer am going to do what's right for all of them. With what's left I'm going to do what's right for my wife and me. They have become inconsequencial.
soolow - I have to think some on the future.I have to figure out what to do and/or where to go when he needs more attention than can be given in the motorhome. When traveling becomes too confusing for him and/or I don't like driving the MH (which I haven't yet), where do we park? We don't have the money to pay park space rent, that is why I workamp for our hook-ups and utilities. When he gets to the later stages, there is little room in here for helping to shower or going to the bathroom. I have told his brother we need the house sold ASAP so we can pay off the MH and bills therefore being able to afford a small apartment. It is these thoughts that will cause some anxiety. His brother is in no hurry to sell. As my hb says he is probably hoping to hold off until him and his sister (who has AD too) are dead then he can keep it all himself. I have thought of looking into seeing if I can sell our 1/3 to an investor and let them deal with him.
unless the brother is living in the home and has been given a vested lifetime interest in it from a will from the person who died, i would think if he is executor of the estate he must sell it to divide among the heirs before the estate can be settled. if your DH AND his sister have AD they will surely need the money for future care. i would bet if it was brought to the courts attention thru an atty they could force him to distribute the estate asap especially due to the circumstances. i would contact an atty and ask what your options are. there are propono (free advice) given thru many of the bar associations in larger cities. you would need a probate atty i would guess.
Elaine H, I CAN remember all those things you listed and that is what frustrates me at times when I have so much to do and no help with those kinds of things he used to do. Intellectually I know that when I was single I had to do these things but life was organized and there was not this madness in the middle so things got done and I had time for leisure activities like window shopping..even gardening was not a chore that it is today. I have yard guys now and they keep the yard tidy but as for flowers...not today I buy them now and then.
We are assaulted fro all directions with this...can't even say " This is not my day to make decisions" any more.
responding to repressed memories--maybe the ladies who have kids would relate but i think its like childbirth. the pain we go thr and the difficult memories are replaced later by good memories of the past and the love of a new life.
Mimi, I hear ya! It’s funny (not ha ha funny!) I have single friends, who do EVERYTHING, but they are doing it for one person & it is so different than doing EVERYTHING by yourself when you were used to having help in the past. Not only do we DO everything, but we also take care of our LO’s whether they are shadowing us or completely dependent on us. A lot of time there is no time for “Me”.
mkayeb & soolow, I hear you too! My DH is very affectionate & clingy, but it is very hard for me to return his affection because even though I do love him it is a different love than we began our marriage with. To be truthful & I hate to say this, I almost feel it’s more pity than love (does that sound bad?)
divvi - in the 80s his parents did a quit claim deed putting all the kids name on the deed. My understanding is they all three own it equally. We are in disagreement in that to sell the house it needs a septic system vs cesspool. the house is not worth the 40,000 it would cost. In 2003 the bathroom shower was covered in mold where the melamine had rotted away. We want to just find an investor/developer and sell it to them as is. I do need to contact someone in Massechusetts to see our options. We have offered to sell our 1/3 to him and then he can hold on to it until the market goes up.
Sorry this got off topic. I guess I should move on this but I try not to think about it until bills come due or the money runs out. Also, it gets hb upset when he knows things would be easier on me if his brother would do something more than just clean the garbage out slowly.
sorry yes off topic but if it were myself. charlotte,i would contact an estate atty and ask about options as if you are DH power of atty and he NEEDS to sell his part for medical issues, the others may have to either forcibly sell or offer to BUY you out for a fair market value. thats the way it works when various titled owners on one property. someone has to buy the other out or sell and divide. good luck.
sorry folks. i hate to see legal problems that SHould have a resolution! hah.