I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. I am following my therapist's advice and have begun the grieving process for the husband I had before Alzheimer's Disease.
I would like to hear from you on this subject. Are you grieving in the way I am? Differently? Not at all?
Oh Joan I don't know how you could have gone on during all this without crying. I really appreciated your comment on how hard it is to listen to someone crying on the phone, this was me, and this is something I am trying to stop doing.
I wonder if it was your therapist that advised to think of something good, every time something sad comes up. And I especially am touched at Sid building the step for your dog, and his being scared on the roof.
It makes me wonder at how different we all are, and I wish, I really do, that I could have been more stoic. I am just a wreck now, and am going to start taking those Celexa again, give it a chance. I just cannot take the feelings of hopelessness.
Joan your thoughts and others here, make me wonder on how we truly were BEFORE this diagnosis and daily struggle. You seem like a steady kind of person, not overly emotional, and I wish I could be that way. Perhaps the way I handle things now, are just a continuation of the way I always was. I know I was mostly "happy" , but perhaps the new lessons of AD and love, have just made the negative side of me bigger.
I admire you all so much , so many of you are just so sensible and seem to KNOW it will be "ok" . These past few years no matter how hard I think there is a light somewhere, the darkness just looms so much. I am calling a therapist TODAY, as things are just not good. And THANK YOU SO much for all you do, for this latest blog, and many many good thoughts and hugs to you.
Joan...yes that is exactly what I'm going through now. I had a 1 1/2 hours counselling session yesterday...my first session, went right back to over 50 years ago when we met. We went through the stuff with the kids, how some are supportive and one not... I cried so much, I walked out of there emotionally drained. I have been crying for the last 8 months, since he went into care. Guilts for locking him up like he was as a boy in an abusive orphanage situation. She told me I 'm grieving....something I have been told by others all along. I'm to excerise and do happy things to feel good . Easier said than done. I'm greiving with you Joan...We will get through this somehow.
I don't know why, but I seldom cry. Have always been this way. I do cry when I'm happy. I cried when they called me to tell me my son's transplants were successful. I didn't cry when they told me he had been murdered. I didn't cry at my Dad or Mother's funerals, nor my son's. I cried when they caught the one who did it. I must be wired backwards! I feel a lot of sadness at times, but not so much that it interferes with my activities or life. Other times, I feel happiness when I remember all our good times.
I suppose everyone grieves differently. I am so sorry for all of you who are going through such rough times. All I can do is tie another knot in the rope and drop it down to you. Hang on! I love you all.
The first two years that he was diagnosed I cried a lot and very hard because I was actually mourning his death. I really believe that...he is still alive but that is just how it felt. It felt like he had died and now I still cry but I cry for me now not for him. If I am not crying it is because I am numb! I am almost always sad. The only time I laugh any more is when I watch my favorite sitcoms. I try to watch them as much as possible!
Joan, I have only known my DH for a little over 20 years. We've been married for 13 of those years and the last 5 years included ALZ. This is a second marriage for both of us. I had learned to rely only on myself for most of my life and while we had a wonderful love, trust, and partnership, I never depended on him for my emotional happiness. I loved him openly and fully but I guess you could say that I was always waiting for the other shoe to drop and the bliss to end. Maybe I never thought I'd have him forever and I would not allow myself to be devastated if he left.
I've been told in the past that I'm 'cold'. I prefer to think of myself as practical - it sounds less harsh, or emotionally stunted. Whatever it is, I find it much easier to cope with our life if I bury my memories of what was and just deal with today's reality (late stage 5 / early stage 6). I do cry once in a while but find those emotions so debilitating that I don't go there too often. I'm as much of a mess as everyone else, I've just decided to bury it for now.
It is so true that we all grieve differently, in our own way and in our own time. I can only speak for myself.... while I did grieve from the beginning of symptoms, right through each loss and each stage, I didn't cry often, I was too consumed in the daily care, too busy building those walls so I could survive. It wasn't until I admitted to myself that no matter how much I did, no matter how hard I tried, there was no way I could reclaim my husband from the chains of Alzheimer's, that I fell apart. It wasn't acceptance, it was defeat. I grieved deeply.
But even that was nothing in comparison to how deep the sorrow was when I had to place Lynn. I wasn't "just" grieving, I was in full blown mourning. I mourned much as I would if Lynn had died. In many ways he did..... Not only was he not able to be there for me emotionally anymore, but now he wasn't even there physically. It was surreal, this feeling of loving him so much, but having to say goodbye to every aspect of who we were........The pain was intense, truly more than I thought I could bear.
I refused to let go of the love. It took me close to two years to dig my way out of the grief. I am aware that holding onto the love made the whole process take longer. But to me it was less painful than letting him go, locking up the love I still feel for him, the love I will always feel for him. It seemed more than unnatural, it was impossible. I know he is not the man I married, but I still dearly love him.
What got me through those two years of mourning was holding onto every tiny little glimpse of "My Lynn". To this day there are still glimmers of the old him that shine through. A smile, a laugh, a gentle look, tender touch, words of love......Of course it is not what it once was and I know it never will be again. But I have come to a place of peace where our memories live in my heart and I completely love the man he is now.
The poor bugger, it just isn't his fault either. If he could he would have moved mountains to defeat this beast to find his way back to me, to us. He can't, but he hasn't completely surrendered either! He is "still in there"....just trapped. I see it, I feel it. I stopped trying to drag him back into my world and instead went to join him in his. I do anything I can possibly think of to bring quality to his life. To make him happy is my only wish.
It hurts like hell while working your way though it, be gentle with yourself. It is a long process. When people would tell me I needed to let go of the pain, stop grieving, I would tell them, it is suppose to hurt when you lose someone you love deeply. It still hurts, it just doesn't cut as deeply as it used to. It is only because I allowed myself to mourn the loss of him as my husband, the loss of us, that I was able to reach this place of peace in my heart.
I am sorry for the pain, the loss and the heartache ((hugs))
“There is a sacredness in tears. They are not a mark of weakness, but of power. They are the messengers of overwhelming grief and of unspeakable love.” ~ Washington Irving
Joan, I find it (the grieving) easier to deal with now that he is in the Veterans Home. When he was with me 24/7 & I could see his decline everyday it broke my heart. I did a lot of crying & I think that helped. I also have friends who ask how I'm doing & really listen when I talk (of course I never told them “everything” but enough to make me feel better). I go to visit him almost everyday & I do still love him, only as everyone here knows, it's a different love. So how do I cope when I'm alone at home? I hope this doesn't sound “cold” but I don't think about him. (Fiona68 I like the word practical instead of cold......I think I have buried the memories too....at least temporarily).I have a lot to do to keep me busy. You would think that since we have lived in this house for over 35 years that I would see him everywhere, but I don't. I must admit that when I found a picture of him that was taken a few months after we were married my heart skipped a beat & it brought back memories. I know that if I just sit here & think it would drive me crazy.
I know when I took Hospice training in 1995, one thing was stressed and that is the person who has lost a LO has a greater need to talk than close friends and family have the ability to listen..that is why we had the bereavement counseling offered. It really is true and if we cry or not, just talk, one reason we end up abandoned by do many is that they don't have the ability to hear our sad story chapter after chapter. Our story is always changing and always for the worse.
Like you, Joan, I don't sit and cry tears often but when I look at pictures of this once handsome and strong man who could do anything and who now doesn't even want to walk out in our yard anymore with me..or anyone, doesn't want to read his books or have me read to him...( he used to read me bed time stories....history stories...), and like you said, no more tender touches or words..no conversation never mind before it was not a conversation of depth, now there isn't any, I just feel this wash of sadness pour over me... He is in his chair now and couldn't care less what I am doing....he looks at me with a sort of blankness...one day it is going to be " who are you?"...this is crushing...
Wow. This is really an amazing thread, one of the best yet. I read each and every one of all your words, and to each of you, you are sooooo wonderful.
I wanted to add one more thing. This may just be me. Like ElaineH, I don't spend every day at home thinking ALL of the time about him, but, of course for many of the moments in the day.
But, this thing, this grief, (oh thank you thank you Nikki), is more that just about what is happening to Dado and me. It is the TRIGGER, but what I really feel awful about, is connecting all of life's experiences to it, and thinking that now, that is just how it will be for now on. No light shining in the distance. No more nice people , that you are the only ones and I will never be able to get along with people again. (this of course due to my feelings of non support , judgement, and uncaring hearts)
yet , in my defense of my up and down emotions, I know that in the past month, I have had way more days of action and doing things and striving, than days of cannot go out of the house sadness. Perhaps only a week out of the month is the low days. So that is pretty good, considering, it all. And I am, going to get counseling. I need to get out my fear of the future, and fear of people and conflict. whew...
This may sound so selfish, but this is the way I feel now that my dh is gone. I only cry or feel really sad when I think of the good times we had together...no not good times, but great times. Therefore, I do believe my grief is more for me then him and that in turn makes me unhappy that I could be so selfish. Then I pull myself together and remember why I feel this way and I do believe it is because we both always thought I would be the first to go and I never prepared for losing a husband who was 13 years younger then me. It is almost like he betrayed me. We lived together for years before we were married because I always said I am too old for you and that is when he would always say...."I'll keep you young". The thought that comes into my head that I hate is..."why did you leave me....you promosed me you would be here for me when I got old by keeping me young".... Then I just want to smack myself in the face for being so self-centered. "It's all about me comes to mind"....It's like a bad play or book...where the ending is all wrong.
Coco, I just reread both of your posts... please know this comes directly from my heart and is not meant to upset you... I can't help but think what could help you is if you were able to stop comparing yourself to others. It seems to me we all see things in others that we are unable to see in ourselves. Plus it is also true that through writings one may come off strong, but there is heartache words can just never express.
I find you stoic and strong!! You are grieving, hurting and have been overwhelmed for far far too long. I see a lot of you in where I was in 2009. I was in a perpetual state of grief, trying to cope with both the loss of my Dad to suicide and the loss of the love of my life. We can only take so much... tears are not weakness!! Feeling one's emotions is not weakness, it is strength in it's purest form. There have been enough people knocking you down, please dear Coco, don't do it to yourself ((hugs))
I also believe that when one seeks help to deal with their emotions, that too is courageous and takes great strength. I think you are doing amazing!!! Far better than I did ((more hugs))
Coco--to add to Nikki's post--I think how the disease has progressed in Dado--relatively fast compared to my Steve--has made the challenges even harder for you. I firmly believe that when the disease progresses slowly, it gives one more of a chance to regroup and regain their emotional stability before the next downward plunge. I know that was the case for me--Steve has had long plateaus that have allowed me to cope with the situation before the next crisis hit. While some may say "ripping the band aid off slowly" is harder--I don't think it is. Of course, none of us get to choose, we must deal with whatever comes. But don't be too hard on yourself and don't worry--the feelings of nonsupport, etc. will go away. You will never forget who supported you and who didn't, but at some point, the wounds will be less raw.
I have reflected a lot on my grieving process. I tend to hold a lot in but I realized a long time ago that constantly focusing on the sadness does not help me today. My marriage was not the best and I learned a long time ago that my husband could never meet my needs or make me happy and that I had to do that for myself. Thus I have relied on myself for most of my marriage. At this stage I do not seem to have a lot of warm feelings for him. I respect him and take care of him but he is not the person I married. What I missis just someone to carry on an intelligent conversation with. Now when we try to talk I am constantly frustrated as is he because he makes no sense and cannot follow a simple train of thought. I am hoping that once I get him placed that perhaps I can grieve easier. I am still waiting for a room. She told me one month but it is already going on 2 and it could take a lot longer than I first imagined. But that is okay as I have learned the God's ways are not ours. He seems to be having more angina symptoms and told me yesterday that he thinks he is dying. It may be that he may pass before I place him. In any event I have let go of it and find I have a lot more calmness when I do rather than trying to control everything. This website has been a real support for me. Thank you all
Sending big hugs your way, everyone. Like CO2 my marriage was not the best although we just celebrated our 46th anniversary. He was always self-centered and everything had to be his way - so now when everything has to be his way because of the AZ that part is no different. Because I've always been a peacemaker and wanted to keep him happy and not have any confrontations it's doubly hard to make decisions and have him get so angry. Roundabout way to say I keep everything inside - haven't cried much, but when I think of when the time comes to place him it makes me sad, but in a way I just wish could be left alone.... does that make any sense? I suppose all caregivers just want some peace and quiet and when we get to that point the quiet is when we finally grieve. A story I once heard said that God makes us like a tea kettle that lets off a little steam at a time - if it didn't it would explode. Grief is the same way... God lets us grieve little by little so that we don't have to face it all at one time. May you all be comforted by God's love.
For me, more grieving and tears happened in the early years, when my beautiful relationship was fading before my eyes and I didn't understand what was happening, and during a drastic turning point a little over a year ago when he went from gentle and demented to psychotic, aggressive and in need of placement. The first was more about loss, the second more about shock and crisis.
Now, a year into placement, and with him seriously declined both mentally and physically, I think about happy times and smile sometimes. I think I'm past the grieving. It is much more like longer-term widowhood now. He's breathing, I'm seeing to his care, but the marriage part of my life is a past chapter. It feels like a weird place. When he actually dies, it feels like I'll be in a kind of strange place relative to other widows at funerals. It will be a time for sharing memories about the person he was. It will not be about grieving a loss, because that has already happened and life has moved along.
emily, The last part of your post nails it for me. The marriage part of my life is long past. Having a DH who no longer knows who you are may be what makes a deference. I am truly just his caregiver. I hardly ever cry, I think I did most of that before the dx. The 10 years before when our marriage was failing.
My heart breaks for those who still have a strong connection and feel the very real pain and loss. ((((Hugs))))
Emily's post made me flash back to my DH's funeral. I wrote & spoke his eulogy, it was intimately personal. For the most part I felt like I was at a party, talking, laughing, seeming happy. I'd grieved for ten years, altho many of those beginning years were good, he progressed slowly, we did all our normal things, traveled a lot, etc. It was a long time before he threatened me, said he could kill me with such rage. I'd imagined the funeral so many times that when it did happen, I was like an actress speaking rehearsed lines. Below the surface I think I felt a certain burden lifted that I had carried for so long I barely knew it was there anymore, it had become my way of life. Afterwards I wondered what people who came to comfort and hold me must has thought. Where was the weeping, grieving widow? I think she had already come and gone, completely exhausted from overwhelming grief some time ago.
Thank you all again for your posts. I wait every week for your thoughtful words Joan and others' responses. I do not know what I would do without this forum! I agree with all the points about grieving - we are all at different places and I think grief manifests in a variety of ways. Like some others, before my husband went into care, I was constantly busy trying to put out fires and keep us safe. I did a lot of "private" crying in that I did not let my husband see. I was devastated with all the losses and changes. For the first year in care, I would say I easily cried several times a day. I would "see" him in the house all the time, and hear him sometimes. The empty bed still really gets to me! I shared in the therapy discussion week getting fabulous support from a psychologist who I am seeing again every two weeks. I cry less now however can easily be triggered. While walking up the driveway the other day, I looked at a king daffodil in bloom. Those were one of my husband's favorite flowers and there are dozens in bloom that he planted. As I looked at that flower, a broke into sudden loud wails. Tears are running down my face as I write this. I believe in needing to give into the process and let it happen. I have a friend who is a geriatric mental health nurse on faculty in a large university. She talks about often seeing when an individual's loved one passes, the caregiver has already completed the grieving so can move on. This was reflected in some of the comments here I read today. That gives me a lot of hope. Another strategy I have found incredibly helpful is hiring a dementia coach. I so agree friends get tired of the story and grief. A psychologist and coach are paid to listen and they have expertise on the disease and grief/loss. Hugs to us all. We are brave souls.
I did most of my uncontrollable sobbing right after his diagnosis because we were immediately thrown into one crisis after another resulting in a 3 month stay in psychiatric hospitals. My life as i knew it was spinning out of control and there was a real possibility that my husband would never be able to come home again. I did see a therapist which helped a lot but family, friends and attorneys were all pressuring me to place him as soon as he was released from the psych hospital. I wanted him home and was able to accomplish that.
He has now been home a little over 4 years and I am truly greatful he's been able to be at home. Yes, we've had difficult times and will probably continue to have difficult times but being with him as he declines has helped me adjust to his progressing illness. I am still very sad and heartbroken at times but I don't feel the excruciating pain and despair I did when he was literally ripped from our home and my life. I believe I am grieving on the installment plan-each time he loses a function or ability, I am depressed for a while, even cry quietly, but somehow find the strength to cope and move on to dealing with this new person. I do miss the man I married but still love what's left of him and that I can physically and sometimes emotionally share my life with him. I do know that I am not finished grieving and when the time comes that he passes on, I am sure i will have difficulty accepting it. Such a horrible disease for everyone.
Thank you Betty--you expressed exactly what I'm sort of expecting when funeral time comes. Who knows how I'll actually feel, but I wonder sometimes what people will think. The fact that I'm at the ALF every day, helping feed him a meal, stocking his supplies, taking him to the bathroom, should stand alone as evidence that I care and have not abandoned him. But I have, in many ways, moved on...with new activities, social and intellectual. I'm content, I'm letting life start to fill in the gaps again. So I will not be a classic bereft widow--I'll be helping remember a wonderful person, and probably feeling grateful that he can finally move on too.
We all have to find our process, and do it. I'm a big proponent of therapy, such as Joan is describing, to help us sort things out. And I'll reiterate what I heard on this Board many times, long before I could imagine ever finding myself in this position--it's different when your spouse is in late stages and doesn't connect to you or know you anymore. It is in some ways freeing. If we are healthy creatures, healthy organisms, we'll naturally try to re-establish equilibrium and contentedness after our lives go topsy-turvy, and sometimes it's the progression of the disease that enables us to do that.
Emily that's very well expressed and captures it for me as well.
We need to understand the necessity of the duality in the mind where in the first part we separate ourselves from our emotions as best we can and the duality is our real feelings and reactions versus what we have to shut off so we can do what we have to do.
The second part I believe is different if we put our spouse into a NH and they progress. It's morphs from that shock point into three distinct states. We continue to care for them but now the main full time absorption in that is turned more to professionals and the reality of re-establishing equilibrium as Emily said is in our face. The third and new state that comes in this time is grieving for what all have lost.
It takes time to catch up with what is actually happening and dementia caregivers don't have that time except for moments here and there. After 15 months alone I'm no where near done either fully registering what has all happened to us or having feelings about that or having feelings I've had to repress for so long start coming out. Good luck to us.
Wolf I cannot believe it has already been 15 months!! YOU have been such an inspiration to me too, I read and felt all your words when you first placed your Dianne. YOU have made me love men, even more.
No offense Nikki of course, good words for thought. And I reread what I wrote too. The light bulb came on, that I have been beat over and over again with the "others have it worse than you", and "happiness is a choice"
Being around uncaring negative energy is WRONG WRONG when we are trying to cope, honestly cope, and of course anyone would choose happiness. Each day I try to hide in my yard and house so I do not run in to the people next door, and I realize how sick this is. (10 more day they leave, I will not be here next time they come)
Back to you Joan. Please take care of yourself during this process, eat well, take vitamins, and be around ones that love you. Off to take my own advice now.
Whew... I kept checking back in just to make sure I hadn't upset you. It is so funny you brought up the happiness is a choice crap, I just had a discussion with some of my family about this the other day (again) I do wholeheartedly agree when one can find the positive in a situation that is does make life's difficulties more bearable. But there are something's you just cannot put a positive spin on, there are something's that cut people to their very core ..... the very last thing they need to hear is Mary Sunshine blowing pixie dust up their butt with useless platitudes. Pfffffft.
Yes Coco, be done with the negative people and surround yourself with those who do care. As for hiding from the people next door, you will handle that in a way that is best for you. Me I wouldn't hide, I would flip them off, smile and go on my way :) ((lots and lots of hugs))
Marilyn, I appreciate what you said about how quickly the disease progresses, that has to play a part in how one grieves. I too think when it is slow like it has been for us, one has the time they need to come to terms with each new loss. As we have also said many times here, when one places their spouse it triggers deeper mourning. Like Emily said, I have already grieved for who Lynn use to be, who we use to be.
But, I do so love who he is now too, so I know I will also grieve hard when God calls him Home. I am blessed that Lynn is still able to communicate on some levels. His smart ass side still shows on occasion, I love that so much!! He is still loving, always reaching up for hugs, puckering up for kisses, holding my hand. No, it is not what it was once, but it is endearing. Even late stage he is trying to express his love in the only ways he is able. So yes, I will cry my heart out... I will miss him and his presence in my life. Just typing this has made the ol eyes water. I am not done grieving by a long shot.
You have all developed such wisdom about this grieving. Simply put, it is complicated, to be sure.
Initially I cried a lot; I was looking at a vast abyss involving a terrible disease and the prospect of closing a business about which I knew nothing. I had begged my husband to get his affairs in order so I would never have to deal with his despicable partner. Pollyanna DH, who believed that everyone was good and all that was needed to make them good was to believe in them, did not get his affairs in order. So while I grieved deeply for the man I loved, I was angry that he had put me in such a position - especially when I had been jumping up and down, waving my hands and trying to warn him of what would happen.
Needing to sort through this, I found a therapist who happened to be Adlerian trained (who believe that emotions are influenced by thought and changing the way we think about things changes our emotional responses). It is a helpful cognitive therapy. For me, though, it didn't work spectacularly for the grief. There was just too much grief. I believe that unless someone travels this road as care giver, they cannot understand the complicated, unrelenting, and sometimes oppressive grief that care givers experience. For those of you looking for a therapist, it is important to inquire about their experience in grief counseling and their experience with care givers. I do not regret the Adlerian therapy and it will be helpful in life, if I ever make it to the other side of the abyss.
Yes, Nikki, I agree that the grieving is not over for us yet. I find it amazing that Steve can still show affection for me the way that Lynn does for you. Hugs, kisses, smiling when I tell him I love him, etc. Even "telling jokes" in gibberish and mugging like he always did. It will be so hard when even those things are gone forever...
This is a wonderful thread Joan! Give yourself a sticky!!!!!
It's amazing how each one of us is going though the same disease, in different stages, and each one handles the grieving process so differently...not better or worse...so just very differently.
My deep dark clouds of depression... maybe it's more fatigue than depression, roll in and out with the caretaking duties. I am so tired of devoting all my time and energy on this thankless position. I signed up for it when I exchanged my wedding vows..."for better or worse" "in sickness and in health"..Yes, I would love to have the companionship of a male friend in my life on a purely platonic relationship. My grieving is not for my husband, but rather that I never had a good marriage (probably due to undiagnosed FTD). I am grieving daily (and have been for almost 20 years!) I never really had his true devotion, but deceit. Yes, I mourn for what I never had. Not for what I have lost (because I never lost anything), but what I never had---a loving caring life partner.
This thread should be kept at the top of the list.... When I got the news...well having been down this weary road twice before with my mom and an uncle, I just gave a huge sigh with the knowledge of what lay ahead. I get overcome with sadness at the losses, especially as each new loss rears it's ugly head...but cry.. not so much. Maybe I have this thick high wall built around me, I don't know...maybe numb is a better word. It doesn't mean I don't care..I just know there is no stopping this ugly journey and it seems to get uglier as the months go by.
So much talk of mourning! And how can it continue so long? Who would have thought there were so many ways to mourn the same lost relationship. Yes, I cried when we were diagnosed, I cried as we endured each step of this awful disease, and cried so hard when we were freed from it by his passing. Some of my distress was for his losses and frustrations, and a lot of it was for my own self as we just endured the next trial. For so long, we were unable to share our own children's lives, deprived of any joy in retirement, limited to the location of our four walls, and the loss of companionship of those we loved as a result. Yep, the whole story that you all experience in your own lives. While we were loosing the love we cherished, I was becoming exhausted, worried, and afraid of what comes next. Sometimes my mourning became so intense just do to the weakness I had, both mentally and physically. It just becomes a runaway emotion. My strongest moments were when we had visitors, and I put on a front of 'all OK' to others. (maybe my mistake). I just know that I had become to weak to be in control of all those emotions, whatever they may be.
After my guy passed on, I was a wreck, and could hardly care for myself. I'm only 60, and felt 90. It wasn't long and I was having complications with my heart and blood pressure, and hospitalized to stabilize me. I was so weak, as I simply had just insisted on doing everything myself, with no counseling, or help. With my head in the sand, I cared for my guy. I did finish up all the 'sooner-than-later' paperwork, and arranged for the assistance I needed, or the placement for him. I just didn't do it. I was truely convinced I had it under control. I was holding on to a life that just wasn't going to get better.
Now that I have more energy and clarity to think, so much has become more clear. I still feel like I should have followed up on my arrangements, and maybe would have had more of the closeness and feelings I so sorely needed during his last times. Strange how the last 8 years, which seemed to drag by each minute, now seem like a 'time period' that is more compressed, and that our genuine lives together are becoming more of my memory of our past. Not to say that it doesn't now make my periods of mourning even more intense, but just not those unexpected, fall-apart moments that come out of nowhere, several times a day. I guess with all of this rambling, I need to remind each of you that every relationship is different, yet special,... and very importantly YOU are a big part of it. Do what you can to keep your health, whatever that may take of you in effort, and you will be grateful for this always. It is deserved by both of you. Hugs and then some more!!
Well, I have to say that in the almost 6 years I have been doing this website, no one has ever asked me to make a blog topic a sticky. I guess this really hit home wiith a lot of people. I have made it a sticky for the time being.
As for how I'm doing - I think better, in the sense that I took the therapist's advice and I am letting the wall down, allowing myself to cry and mourn the husband that was and the relationship that was. It does feel better than trying to keep it walled up. I cry a lot when I think of all that was and will never be again, and I will continue to cry until I'm finished, whenever that will be. I'm not rushing it.
I do not, however, cry in front of Sid. That just upsets him and makes him cry.
Nikki's are the words that are most in sync with how I feel. The desperate attempts to bring him back to who he was. And yes, Nikki, defeat is a better word for what I felt than acceptance. I finally, after almost 5 years of the most valient of efforts, gave up trying to bring him back. Alzheimer's deafeated me, and that is what I accepted, not the loss of him and our marriage. Placement is next for us, and if you somehow managed to get through it and come to some kind of acceptance of that, I suppose I will too.
It's 3:35 in the morning. I've been laying in bed thinking (now that I'm going to a close friend's 'wake' tomorrow) that my best friend who spent many overnights here last year because I live close to where his mother was in a nursing home before she passed from AD late last year - has never invited me to stay with him in return. I felt I should get up and turn on the computer so I could explain this to you.
I live in some strange parody of The Big Chill without the good looking actors or the witty writers. One of the group killed themselves just five years after graduation. We all still weave in and out of each other's lives. We all meet in Guelph tomorrow for this wake above the old bookshop where the artsy subculture watches 'films'. Then two are off to Sanibel to play golf. It all sounds chatty and chic and the truth is that it has been that. There have been numerous phone calls because this is the fourth person we've lost and he was the youngest. It's unspoken that we hope my Dianne is the fifth we lose (and not yet another in between). In fact it's pretty much unspoken about Dianne at all. There are you see limits even in classic's like The Big Chill.
I woke up feeling a great sense of loss. I moved and my cat woke up beside me and jumped off the bed. My best friend has never invited me back I realized. I play a role he needs I realized. I don't even want to go there. And I don't want to go to this 'wake' and right there about an hour ago, I understood I hadn't been alone for 15 months. I've been out here in this new town for over 6 years and Dianne has never really been here with me. I haven't talked to her in any remotely meaningful way in over 3 years and I remember one night over 4 years ago where she was 'there' which was our last meaningful Wolf & Dianne talk and it didn't last that long before she again drifted into some other place.
I knew that night it might be our last. She was so trapped back then in all the lost abilities and her own denials in a hopeless situation she'd already lost reason and skill to the point it must have been horrible for her. And now the old lady I watch over who stares at the ceiling and is empty of any reason or self awareness whatsoever is still the person Dianne but now blissfully free of all the burdens which rest solely now with me.
I haven't cried in months. And she crosses my mind many more times a day now than she did at all months ago. And an hour ago I remembered the last time we talked and that I knew it might be and that is another breakthrough moment for me tonight in a lineup of them stretching fifteen months.
And on this night where Joan has now put this up as a sticky, I got up to share this one because for me this is the road. My reclamation of my own reality. My journey of my own healing. Which is not about the acceptance of what has happened to this sweet girl but is certainly also very much about that.
It is the road of acceptance of myself. It is the road of acceptance of the things that have happened to me - not to her. It is the acceptance of my own days and my own future days which is defined that I get up and feel right living them. And while that is still a road I am on, it is also a road I have come a ways along.
We're all different. I knew years ago that Dianne was doomed and once understood can't pretend I don't. My wife survived for a few years by pretending but I can't do that. Some of us must deny to continue. And if we do get through by displacing information then it's harder later but it may have been necessary.
I wouldn't worry overly about it. When the patient is bleeding you don't discuss that they might have bled less in some other way - you stem the bleeding.
I disagree that the hardest thing is to accept what has happened to them. The hardest thing to accept is what has happened to you. We can't get there until we no longer have questions and resistances inside about what has happened to them; but, resolution and moving forward comes with accepting what we are now.
Acceptance is that we no longer dwell. The memories no longer stun. The tears only flow sometimes and in genuine memory - no longer in reaction. Our thoughts flow through to conclusions in our lifelong normal way and our concerns are about our involvements and meanings within that and not primarily with references to the past.
I neither lecture nor will I let anyone lecture me on what love is or was, what difficulty it takes, what hardships we endure, or what road is ours. It is still hard for me to accept what has happened to her, what is and will happen to her, and what has happened to us. And by that I mean I understand fully but it hurts a lot.
But I've understood for some time that defeating Alzheimer's isn't about accepting it. It's about fighting it. Alzheimer's has destroyed her life. It has destroyed our life. And it can bite me because it hasn't got a chance of getting me.
I give up Dianne because that is reality. But I reclaim Dianne from Alzheimer's through memory and now that it is 5:06 am, I've had an hour and half's memory of our last conversation together because tonight I have reclaimed that from the disease. And when I am done Alzheimer's will be a spent force and I will have laid her to rest from it, and I will take my memories free of any disease and live on.
Tomorrow I will attend this wake but I need no awakening. My life with Dianne continues where I earn my own respect in seeing her through this. I'm not so twisted in my own pain that I can't see that I am true to her in my own way. And I'm not so damaged not to understand what that says about what I am. It says good things about all of us and those that can't reach those realizations or feelings could only be doing so wilfully. We should have no hesitation to look them in the eye in any afterlife and I see no way to argue that.
We bear the pain. And if we enshrine that pain as the definition of ourselves in time that is also wilfull. And if we try to avoid the guantlet we must go through to truly realize and move to acceptance it will be worse.
I will continue moving forward until I am genuinely living without constant reference to Dianne or any other part of my past as the defining force. There is no need for me to apologize to anyone for living the life God gave me to live. When I have moved past my past I will be in the present and there is no reason why I can't honour her, watch over her, and move past her all at the same time. I honour my mother and my father and I accept their deaths. I honour my wife and I accept that she is gone before it occurs as I watch over her. Afterwards I invite her to be with me and watch me live the life I have been given.
My comments are all directed to after we place our spouse or they pass. I have no advice for before that because I barely survived that. It has been a truly hard 15 months alone where as a proud and strong man I admit I have been wailing on my knees and have utterly lost myself at times. But I am along the way through this valley. And I have some advice for any valley of the shadow of death wannabee's. Stay out of my way.
Joan is at the worst part for me. The very hardest part. Daring to conceive of sharing this burden. Daring to admit that I was past the limits of what I can do. I'm not speaking for Joan. That's how it was for me.
So eloquently stated, Wolf. You say you have no advice for those of us with spouses still at home, but your part 2 spoke directly to me; "The hardest thing to accept is what happened to you." You give us hope when you say that "Joan (and by inference the rest of us) is at the worst part for me." The tunnel is so dark and here is a glimmer of hope that caregiver survival is possible.
You speak of the pain, painting it in many different ways, but always recognizable to us. The pain is twisted with memories, and sometimes it is easier to shove those memories in a compartment and lock the door because they get in the way of managing today.
You are doing us a great service through your writing. I appreciate all of the practical advice given on this website (so much so, that as I come across a gem that I may need, I enter it in my phone under "AD" for the time when I may be standing in an aisle trying to remember what was recommended). But I also appreciate the philosophical discussions about our memories, our friends, our coping. These are the things that the mind keeps going over, trying to make some sense. Since conversation is almost nonexistent now, my mind replaces our lively discussions with ruminations of this sort. Like a child's puzzle we are shapes that ought to slide easily into their own spots in the Big Puzzle of Life, but guess what? The puzzle pieces are altered and do not fit, no matter how may times and ways the mind turns the piece.
Perhaps it is therapy that compels you to write. No matter. Just know that your contribution is so valuable; you are shining a little hopeful light further along in the tunnel signaling to us behind you that the future may not be as bad as the present. Hope.
Wolf I am sorry for the loss of your friend. I agree, never apologize for what we feel, it is our pain to bear and only we can understand it fully. We may all be on the same journey but we are each cutting our own path. Which only makes sense as we are unique individuals. We have different life events that impact the way we feel, cope, grieve etc. etc.... What may be a profound truth to one, may mean diddly squat to another. There is no right or wrong, only what is best for each of us.
Joan, I am glad to hear you are allowing yourself to feel your true feelings. Though it hurts like hell, that is when the healing can begin. I am also glad you are not trying to rush through it, it will take as long as it takes, there is no short cut. Grieve in your own way and in your own time.
When my Dad took his life, each of his 7 children reacted and grieved differently. For awhile I had one sister who said over and over it was an accident. I wanted to shake the truth into her, not because I wanted her to feel the way I did, but because I knew in denying the horrific truth her pain would only increase. But the fact was that she was not yet able to cope with that harsh a reality. She needed some time for her heart to absorb the blow. How cruel it would have been to try to force her to accept the truth before she was ready. She knew he had died, that pain was all she could handle it that moment. It is unfair to try to rush anyone in their grieving process, it is their pain and theirs alone. When we are ready we will grieve in the way we need to, in the time we need.
Joan, due to the letters I wrote you, you personally know more of how difficult placing Lynn was for me.... My heart aches for the pain I know you must be feeling. If it helps at all, I can tell you honestly that I have moved beyond acceptance, beyond defeat, to a place where I sincerely FEEL the love again and have reached a place of inner peace and comfort. I still love Lynn so very much and it does still hurt of course..... but I liken it to stubbing your toe, the first time you hit it you are hopping up and down cursing because it hurts so much! Well, if you nail that same toe, day after day, year after year, it still hurts, but you are better able to handle the pain. It doesn't cut as deeply. (And that is why I always say I am no longer crippled by the grief, but I still limp.)
I pray you and all of our family here are able to find a place of peace and comfort in your heart ((Hugs))
When Sid was at DC today, I had a meeting with the director of a Dementia Specific AL. When I came home, my back was killing me, so I took a pain pill and laid down. Our life together, the thought of placing him, of living in a house without him forever, and the idea of him living the rest of his life in a NH or AL hit me hard, and I sobbed my heart out. In the middle of all the crying, I thought of you, Nikki. I kept telling myself - Nikki felt like this, yet somehow she has managed to come to some kind of peace with it. If Nikki can do it, then I will be able to do it. But not without a lot of pain and sobbing first. And I believe with all of my heart and soul, as well as a lot of experience putting off mourning my mother's death, that it is much better to feel all of the pain and sorrow in the beginning. If you don't allow yourself to feel it, it only gets pushed back and eventually explodes.
So I had myself another good cry today. It won't be the last. But I do feel better afterwards. Better than I did when I was refusing to deal with it.
Oh Joan, I know it hurts desperately right now, truly I was crying by the time I finished reading your post. Whenever I reflect upon that time in my life, it still has the power to make me cry. Where you are now, and then placement, for me have been the hardest parts emotionally. Crying is healing, let it out.......
You are right, It is much healthier to handle the grief as it comes, but don't beat yourself up, you are dealing with the pain when you were better able to cope with it. I think our walls crumble when we are ready to face those astronomical emotions. When you are dealing with compounding loss, it makes it even more complicated. In time, your own time, you will be able to work you way through all the grief and be able to mourn your losses. Sid, your Mom and Dad, and even the loss of who you used to be. It's tough work but I have no doubt you have the fortitude.
On my refrigerator there is an old warn sticky note, it is from the time when I was placing Lynn. You wrote to me, "If thoughts and love can give you strength, you have plenty of both from all of us."
That meant so much to me at the time. I had never felt so weak! And I leaned on you, all of you for strength. YOU have plenty of both from me, from all of us too Joan. I know you will be able to eventually come to a place of peace and acceptance through every step of this Joan. Think of all you have done, all you have experienced, things I am sure at one time you thought you simply could not do. Yet you did, and you did so with grace and class. And not only that, but spent much needed energy and time to give us all this safe haven! A heart as good as yours will survive this Joan, of that I have no doubt.
Please know if you ever need to talk, I am here for you. Much love and lots and lots of ((Hugs))
joan, i agree letting the emotions out is the most helpful and therapeutic way to deal with the grief and sadness. like you say eventually it wells up and explodes and the results can be much more dangerous. sorry to hear you are in this state, but yes we all tend to pass thru this tunnel of no return with regards to how it used to be. its a new way of life for us and moving forward is hard but necessary. hugs. divvi