Amber, that's a tough one. I would definitely not talk about my own life but send out signals that she wears you out and that you're not as young as you used to be. I want to modulate the frequency - not shut it off.
If I may, you've sounded like things have been tougher this last while and I hope that improves somehow. I know I went through dips and minor peaks that lasted for months which I never understood. I still do.
I agree things have been getting tougher. Since the end of May....My dog died, daughter splitting from boyfriend and all her stuff that I have to keep hearing and dealing with her shi**y attitude, having granddaughter here a lot of the time....2 weeks now without a break, going to see hubby that always makes me sad, and the list of things I have to get done around the cabin before winter comes and now my best friend telling me that she has found a lump in her breast....I need a break.
Granddaughter is going back today and I plan on taking some time to get at the things I need to do around here and think about how much time I can have her here before it becomes too long......setting boundaries.
Now for the good things I have in my life....no financial worries, health is pretty good, a job I really like, live where I want to live and how I want to live in a cabin in the wildness, car is running good...it better it's only 8 months old, I like living on my own, hubby is doing well in the NH, summer is here so out swimming and kayaking and there are quite a few other things.
My husband was in placement for a very short time. I don't have much to contribute to this topic. So, this is not a contribution, only a resounding THANK YOU.
You posted, now about three months ago: >>Although we both lived on our own for many years before we met,... My world started to shrink about three years after my husband was diagnosed and for the last four years, my life has revolved around him.<<
Your comment unlocked a door for me. After college I moved to where I wanted to be, returned to school and supported myself. I met my husband when I was 30 and he was 28.
I was self-sufficient and I enjoyed making my way in the world.
With his illness my world shrunk and then revolved around him, just as you said. Regarding myself, I think "where is she, what happened to her?" I can't restore her anymore than I can restore what has been lost.
Hi abby*, I'm not sure whether it's different for those of us who married early and those of us who married later. So many people say they have been married for 40+ years, etc., and know no world without their spouse. Well, I did know another world, but I don't know if I could reclaim it even if I wanted to. In a post on another thread, Bunny's Lamb said that the her husband's illness (EOAD) in the prime of life had forced her to accept a "small life" that was contained and constrained. That really resonated with me.
I have a friend whose husband died rather quickly of cancer at age 59. After an inital period of grief and mourning, she created a whole new life -- working at an interesting part-time job, getting involved with lots of projects, meeting new people. I don't see myself doing that. I think the difference is that, unlike my friend, my period of confinement has been a very long one. At some point I'll break of this shell but I doubt I'll stray very far. I've been constrained for so long now that a lot of damage has been done. You're right -- we can't restore our old selves any more than we can restore what has been lost.
CO2, Like you, I have a wonderful family, but desperately would like to get on with making a new life for myself independent of my DD's and DS's families. I started my 4th year in March of this year since placement of DH in LTC. I am still at the kindergarten level. I do not want to renew relationships with friends an family members that abandon me during all the struggling years of caregiving. It was like he had the plague and all of them just quit calling or visiting. Their excuse was that they did not know how to deal with DH's behavior. No one, except DD, DS and their spouses offered to give me a few hours respite. With friends like that, who needs enemies?!! The NH care still occupies my thoughts constantly. Probably guilty feelings on my part for placing him instead of caring for him at home til I became completely mentally insane or physically fell over. I do force myself to walk in the park and do a few things that I enjoy. I just can't seem to ditch the guilt and move on. Don't know that I ever will. A age 67 (next month) if I am ever going to,I I need to get on the ball. Life is passing me by. I truly hope that you are able to make a new life long before the 3+yrs that I have spent at a standstill. Sorry that I don't have any helpful advice to offer but I do hope you will find independent, invigorating happiness soon. I truly do understand your feelings.
AliM , we are the same age. I am a tad older than you--68 in January. It does all come down to how do I create a new life doesn't it. I am coming to understand that I think the answer is one step and one decision at a time and also learning to say no to things you really do not wish to do and yes to things you really want to do. THat has always been difficult for me because I find I have a habit of wanting to please people so I will often say things that I really do not want or believe just to please them. Last night I chose to return to my Monday nite knitting group after over a year of being away. I did not really want to go but I realized I need the socialization. I cannot say that any of the women will ever be bosom buddy type friends but they are kind and it gives me an outlet. When I am there I do not think about him sitting in assisted living waiting for me to come visit. I wish I knew how to get past the guilt. I know my guilt still rears it's ugly head but is not nearly what it was the first few months. I made the decision not to visit more than twice a week. At first guilt reared its head and was telling me to visit more but I said no. The truth is he does not know what day it is or how often I come and if I came every day it would still not be enough. Guilt is based in the premise that we have done something wrong. We have done nothing wrong by placing them--we are just trying to save ourselves. Would love to chat privately if you want to. We all care.
I guess that's one thing I can be grateful for. I don't feel guilt anymore for placing my wife. I did for some time and I don't know where it went except I've come to understand that I couldn't do it. If I brought her home I don't believe she would get better care and she would have less contact and less trained people around her. They have a special contraption they sit her in and shower and wash her in it. Plus it's punitive to me. I didn't do anything except try to help and I don't see how I could have taken the steps I have without the time by myself to start getting used to time by myself.
Those are the two choices. Do it yourself 24/7 with what help you can get or pay to have professionals do it 24/7 and spend some time trying to help yourself. When I had Dianne at home I was so busy I didn't have time to feel the pain. Part of being home alone at first is having the pain start coming out because the demands of full time caregiving isn't consuming us anymore.
Another part of the cost of Alzheimer's is that we begin realizing our pain fully once that burden is lifted and as a result we associate the comfort and safety of our own home with this time where our bad experiences for years begin coming out at the very time we should ourselves be in some form of care.
One of the common experiences of caregivers is that we learn we are on our own in repairing the trauma while we grieve, take on the financial implications, recover from the shock of putting our partner into a home, but not from the shock of how many years you have lost. You have to get better before you feel that one I think.
In that mess of bloody serious mental and emotional strains it's easy to get lost. I think many of us get stretched out because all paths have opposing forces. We feel guilt that we can do things, we feel guilt because we leave them there, and we feel guilt when we enjoy things they can't. Believing in that guilt is bad because we're not awful because we didn't get this disease, and we have to leave them there because we can't do everything ourselves, and it's not wrong to enjoy things - it's wrong to feel we shouldn't.
We have to judge guilt as wrong for the reasons I said or we believe that we should be sacrificed for no reason I can see. And when the guilt comes again we have to know we've gone through this, go through it again, and reinforce the relearning of balance where caregivers have little after years of torture. We do it for love but it is torture which every hard moment we overcame and every crisis we overcome should be sufficient testimony to this truth.
The opposing forces go far beyond that. We feel badly for quite some time normally as a pervasive state and within that to feel a moment of joy or a smile or any positive moment is counter to the pervasive state of saddness/grief/anxiety/lonliness as it's blended in your particular experience. That conflict within remains for many months generally. In my experience it takes a lot of work to repetitively teach yourself to see and open to moments; and within conflicting feelings a percentage of us don't want that and choose one side as the reality. We are sad so we cannot smile. We are happy which any sad thoughts would spoil.
All of my happy moments and all of the quite normal days I now live are within a pervasive state of saddness. I'm neither psychotic or szchizophrenic (?) and she is still dying so how could it be otherwise? I really did look into a mirror and realize eight years of my life disappeared and I time travelled to this mirror as an older person. Psychiatrists would say that is healthy because it shows I'm settling on my feet and accepting what has happened which is that in meaningful ways I did lose those years and I am older and understanding where and when I am now.
I don't believe in moving on. I would have serious conflict if I met someone but since I know any relationship will be fleshed out through talk and experience because I demand that, I know if I follow an honest path I will find my way through. If I change my mind and understand I don't want to be alone anymore, I think it will then be important to find someone and make that work.
The opposing force there is that I'm so lonely I could melt the ice cap by myself. So I allow myself to look at every single picture of a woman in the newspaper and see if I might like her. And I can feel the hunter kick into overdrive when I'm within 50 feet of any woman who is breathing.
When the boat sinks and you make it to the surface in the middle of nowhere and a life preserver floats by make sure the guilt that you survived stops you from reaching for the life preserver because that's a giving up and a waste of life.
The life preservers that float by us are any moment that feels ok, any thought that gives comfort, any object that has good memories, and sound or taste we take in, every down we come out of, every person who is kind, the smallest tiny thing. I now shave with (wait I'll go get it) Gillette Satin Care moisture rich shave gel. It smells so feminine and like her. I just realized I need to look the next time if they still make this. I'm not going to wear her perfume but I already understand I could get dried flowers of some kind I think look good and dab some of her perfume on it so that when I walk by I can be reminded through the strong sense of scent.
I don`t believe in the guilt. I feel it at times and know it`s false. I wish the saddness didn`t always come back and sit overtop everything but that would be denial because it IS sad. I spend my days trying to have good moments and pushing myself overall to get more involved and try more things. That seemed the right road for me and it is.
CO2, I am not on any social network sites. The reason is that I am totally inept when in comes to this technical stuff. I took me a year of lurking on this site before I figured out how to post! The first year of LTC I visited every day. The second year I visited four times a week. I recently cut my visits to two times a week. More guilt piled on! Since DH only occasionally mumbles one word the visits are so boring and depressing. I always think to myself "thank goodness that's over with" when I leave the facility. That's mean of me, I suppose. I sometimes decline an outing with my DD or DS families. Although they have never said anything to make me feel like I am intruding in their lives, I do feel that way. Old Grandma (me) needs to get a life of her own! I did go with them to an Outdoor Drama about Tom Dooley recently and really enjoyed it. Coming home at midnight made me feel like I was sneaking in past curfew. Like you feel about rejoining your knitting club at least my mind was not on the NH while I was at the play. I am really happy you did rejoin. That makes me feel like there is hope. Since reading on Joan's site I have always felt that you, LFL and I have a lot in common. I am so grateful that Wolf is continuing to try to pull us up out of the doldrums. Thanks so much for caring. Knowing that some cares and truly understands makes me happy.
AliM, you say you know nothing about technology--hey you figured out this website and that is something. My husband is still verbal but when he starts conversations nothing makes any sense. Yesterday he asked how his uncles are. I told him all but one has passed and he tells me that is not possible. You have been on the placement journey longer than I have but I do know that since I placed him things are better at least for me. They will get better for you too. This disease is so devastating not only for what it does to the person but what it does to the spouse caretaker. I am blessed because I have a little job that I do from home and also have hobbies that help to get my mind off of him.. I think so much of my difficulty is in my head and when the guilt thoughts come I am aware of them and tell myself he is being well cared for. I do pray a lot and do not have all the answers as to why my life took this turn but my faith tells me that there is a greater good that will come from it even tho I cannot see it right now. Do keep in touch. We are in this together and are not alone
Ha ha Wolf, I've done those very things. I spray my husbands cologne on a Kleenex and have it in the side door pocket in my car so it can smell like him when the car is warm. I've also looked at every male I come across and wonder if I'm attracted to him. The answer is always no, something not quite up to standard. The bar has been set unreasonably high in that all the desirable qualities have to be present with none of the bad. I imagine this keeps me safe from actually being attracted to someone at this point as I guess I'm not ready.
Jules, I see things the same way; but, I don't see that as keeping me safe from attraction. More that the truth is I'm still a part of this relationship and more directly that I'm not a balanced enough person emotionally yet to open and give to someone who is opening and giving to me.
I don't mind being honest. I look at women too but they tend to be far too young for me. When I open to a new relationship it will likely be a willingness to be serious about the realities we are all in. That in my mind is that tuned spirituality and enjoyment of the person's presence, companionship, and willingess to partner that will play out.
That may happen because I have nothing in my heart I believe in except that I have been fortunate in love and that love is good for anyone to share.
Does anyone understand I'm doing all that right now? I'm learning to love again in the face of a mountain of hurt and I've come a long way down that road. When I'm finally in harmony with my own spiritual needs, I will be where I want to be, where I promised myself I would work for it until I arrived for both of us, and finally truly free to just be me without unnecessary reference to my past.
And where I am on that longer road is that I'm relearning a lot of things normal people take for granted because they never had their core blown to bits and never tried to get up after that and stagger forward with most of their meaning obliterated. In my view humans are too engrossed in their own first person experience (me included) and get so uncomfortable when that is impinged on that they protect themselves from it and erase the reality they did so.
That's how hard this is. Normal people hurt others to avoid it. That helps me stay serious about having my own fun again and helps me understand guidance will not be coming from the kiddie pool (which I loved and resent being kicked out of but that's a different part of the challenge).
The duality our lives become immediately on placement is evident in our face without the need to explain how there are suddenly two realities: the one at the home they are in and the one in the home we are now alone in.
The fragmentation of reality is powerful. In it one of the first changes may well be sleep. Whatever else we are going through within a few weeks we are likely finally sleeping.
I'm choosing strong irrefutable examples to eliminate opinion. It's not open to opinion that our lives have split into two worlds from one nor that the spouse going through this has their world turned around once again now from constant caregiving to being in the house alone while our spouse is where we put them.
If this does not rate as traumatic life experience then nothing does.
Within months we may become aware that our life is appearing unwanted from nothing. That is likely what we are doing in it at this time where the blocked realities to keep going as the caregiver begin peeking out and where more and more time begins appearing and more things start gaining our attention as the coiled years begin to decompress.
It's not a matter of opinion that the future is that road - your future life. Eating for one while miles of looped horrors appear like realizing how many years have gone by, how many people don't feel like they're here anymore, how alien the idea of life alone seems in at least those first months and even years.
Most people think highly of those that visit all the time. I think that's personal and not to be judged either way. Glomming a viewpoint from one place onto a different reality is a mindless timewaster.
You see I can't judge the balance for anyone else between the current needs of the patient with the current needs of the survivor. What I believe is that there is an initial shock and settle period which may go for months during which time there's no point in worrying about how often we're there because we're trying to get a foot on the ground in both places.
As time passes it's my own opinion that our future should begin pushing against our past in the sense that the new realities we have to face ourselves grow in presence. For example thoughts about what will happen to us which may be moving from a back mind worry with no time while we were caregivers to deeper more nuanced concerns and questions.
The underlying point is that we are going through massive emotional changes where our struggle with them is not over but where we enter major parts of what in the future is before us. Just keeping the truth that the step we took causes the world to become more complicated and triggers numerous of the reactions their passing will cause is a major step when everything feels so up in the air.
When we are longer term caregivers we have transferred almost all concern for welfare to them and have almost certainly struggled to do that. That's good support for them and certainly seriously damaging to you. I'm not suggesting regreting that which I don't.
But now there is a person in trauma (look at your actual daily behavior and thoughts) who has long supressed all concern for themselves and that is the person who is now building a new life from a deep hole. Where do the priorities belong now?
My answer is as simple as it is brutal. If after things have settled down to something that isn't changing much over a few months and the question is who should receive the most caring support - it is you. Not them.
It is you that faces life. They are facing death. They are in a safe place. You are not. They have someone watching over them and staff helping them daily. You are alone because your children and your family and your friends are not your life and you need one however much dementia has screwed it up.
I visited my wife twice in a period just over a year. She didn't know who anyone was and I talked with the nursing station quite regularly and knew how she was doing. I love her. But going to see her made me react afterwards and I understood I wasn't close to being normal so I had real problems to deal with.
And the glaring disconnect between the truth and what we say flaps in the breeze for all to see. We mean them. We mean sacrifice for them. We mean duty to them. We mean value them. We're lying when we say partnership and equal and both. Because our own concept of ourselves in that equality and the validity of that are so much dust never looked at where we would never dream of pulling that garbage on anyone else but it's ourselves so we never look there.
I couldn't be more angry about this grotesque brutality inflicted by a sea of innocents - but it's on themselves so no one cares to the extent that society itself no where has conceived this atrocity. That the vast majority of human beings live in two worlds not one where one reality applies to everyone else and one reality applies to themselves. The dysfunction is pathos and an underlying influencer in much of what history including today is full of.
When a different set of rules applies just to you then you may be spending too much time looking out of the little holes in your skull and not enough time in the truth of the thing. You're not just in there; you're also out here.
I now feed my wife regularly with love and concern in my heart. I don't like going there but I've had the time I needed. I felt a lot of guilt but I understood I was doing something I seriously didn't approve of for my own welfare. Notice that it worked. Notice my tone everywhere. Take in that it works.
The minute you start treating the one person you always treat badly, you're always critical of, you hate looking into, you block all thoughts from, you can't give a break to, you fear - is the minute you've treated yourself like a human being for just a minute. And if you can do that it will change everything in time. Don't worry about falling down a lot. Just get back up again and ask yourself if you're ok. Don't worry about running out of gas there. You did it for them. But like I keep saying, that was easy in comparison to doing it for you where the never spoken about, different set of truths apply.
I am learning to laugh and enjoy my life while my wife is dying. Less direct than that is a waste of time and evasion. The person who has helped me so much and to whom I am eternally grateful to is me. Don't worry, I'm taking myself out to dinner and I'm hoping we have sex afterwards. Stop recoiling because that's funny.
Is it ok if we don't want to visit? It's a stupid question. Is it ok if one of the bandaids is for your gaping holes not theirs. Yah. It's ok.
My world went a bit mad these past couple of months and I just haven't had the time or the energy to come here. I signed on tonight to come check on the dear friends I have made here over the past 7 years and to update on Lynn and I.
Then I read Coco's post, my heart broke a little bit more and now I just don't have the heart to read through the posts or post an update.
How my heart is hurting for our dear sweet Coco ((Hugs))
And how quickly that pain turns inward and the anticipated grief clutches my heart as I try hard not to, but nonetheless, think of the time when I will lose the love of my life. Just the thought has the power to destroy me.....
Nothing seems quite as important as it did before I signed on tonight......
We teach our children to stand up for themselves, to fight for what's right, and to share among many other things. If we had young children and they asked us who was more important we'd answer that everyone is important and we'd believe those things because when we learned them and when we taught them life was relatively normal and those lessons are important.
Life as an adult is complicated beyond these simple things where we have children which is an incredibly big and important thing in our lives; but, we know they will grow up and their time and focus will be on their own lives just as ours are and the little girl or boy we loved raising isn't here anymore. They are living in Charleston now raising their own children perhaps and likely teaching them the same lessons.
I've made comments elsewhere of going to our empty nest friends and sitting chatting and watching them race across the room as the phone is ringing because it's probably one of the children and listening to their voices bubbling with life and then watching them come back to the living room visibly missing that already. I'm not making fun of them because my eyes can see.
You cannot leave my sister a message on her phone. It is full of the grandchildren's messages and my sister is distraught that they are growing up and playing at Gammy's house isn't at the top of the list anymore. This hurts her a great deal.
The same thing is occuring in professional atheletes and semi professional atheletes all the time. In other words it doesn't matter whether they succeeded or not in their sport. The life of an athelete is short in relative terms and they each face the unthinkable that they can no longer play at the level they did nevermind doing what they've always done - pushed themselves to get better. Instead they have to face a life they don't want at all where being rich doesn't help them because it's not what they're about.
It's not much different when a percentage of males retire. They become deers in the headlights because they were their jobs and conceive of no other thing for some time. Like the mother who is asked how she is and answers how her children are without realizing that.
Loss of our meaning doesn't require death. It happens in different ways to many.
A few years ago we had a horrific incident on a Greyhound bus. A passenger was deranged and killed one of the other passengers. He beheaded him. One of our constables who investigated the scene committed suicide last week. He couldn't deal with what had happened to him after stuggling with it for some time.
That isn't unusual. People are committing heinous crimes all over the planet every day. The vast majority of humans don't but no one country or type of people is unusual in this.
It also isn't unusual for our soldiers (everyone's soldiers) to experience such horrific incidents when they see battle. We wave our yellow ribbons and wish them the best but somewhere else please. Society doesn't want to deal with this yet just as it doesn't want to deal with Alzheimer's spouses yet.
In all of these examples there is one similar thing. Letting go of things that have changed in our lives that have great meaning for us and moving beyond that because we have no choice. That is a struggle for eveybody who faces this. Not just us where we can see that when we put what we go through up among the examples above it is serious and is powerful.
My sister does not want the grandchildren to grow up and the athlete does not want what they've dedicated their lives to to be over and I do not want my wife to die and leave me alone. But all of these things are happening and I understand that police officer who couldn't accept that someone's head was cut off. I can't accept that my wife is dying either and I wrestled with the compulsion of suicide to get out of it too - and that is also powerful.
I say I understand that police officer because I know some things that happen in our lives are an incredible struggle to get over. I watched my mother live beyond my father and that she did have some good years where she honestly had fun in them. I also know she kept my father's last phone messages for years and listened to them often. There was a large hole in her life.
I've seen my best friend who is bright and capable get swamped by what happened to him in business and he spent years wrestling with serious mental issues where that lesson is that when powerful things happen to us they are serious. I've been in that abyss where it all is too much and I stagger around fully and truly lost. I have no arrogance or delusion that I am immune to being overwhelmed by things that happen because I have lived them.
I've spent years of my life including this year being a victim. I and my wife are the victim of dementia. A victim is a creature that things are done to. It's damaging mentally to feel like a victim. It's ten times more damaging to voluntarily be someone's victim where it takes an iron will to know all the way through that the minute it's over is the minute we stop voluntarily victimizing ourselves.
Throw out why. Why obscures the truth. We do it for love and duty and I've said everywhere not only that this is one of the few undeniably noble things anyone does in life - but also that my observations here are that few appreciate what they've done to the extent it should. I sacrificed years of my life hopelessly for the benefit of my loved one and to the detriment of myself. It never occurs to most of us to do otherwise. At the very least take from this post that the world is full of such people also.
I am in two worlds. The one at home is my future and the one with my wife will too soon be my past. There is no other truth that I can believe in. They are in conflict. And my feelings and sorrow and displacement can't magically disappear. Those feelings are also the truth. And in that sad state I could choose one or the other. I could focus entirely on her and keep my reason for living there or I could step out of that by immersing myself into something else and choose my future now.
I don't believe in either of those. I don't believe I have a choice except to straddle the conflict as best I can knowing my wife is dying and needs me and knowing that whatever I do for my future - the one I want is the one I can't have which is her in my life.
It's a struggle to begin believing in what we do not believe in. That we can find our way to invest in the unwanted and open our hearts to it eventually. It's especially hard when we have such conflict to face to go and visit them and help the life we know and want that is leaving and come home and feeling real sorrow invest in happiness we do not yet feel.
Yet that is the road we must take if we are to begin finding our footing in the life we have. And if you come down that road you will see all the places where I crumpled in a heap, where I wandered off into a hole, where you can follow the path of my dried out tears, where the pebbles underfoot still echo my anguish and the air still echoes all of my howling why? why? why?
There is no why we understand. And I am only a voluntary victim for her. In all other places I had to beat my victimhood with a stick repeatedly before it began to break up. My x-friends blew it. It would have been doable to put out just a little more and keep us inside their circle. I would be there to comfort them now and be part of their life now that one of the four of them has died and pretending everythings stll normal can't be in the cards anymore. But they blew it and I have little in the way of feelings for them to offer having accepted finally that they are too shallow for my future. I will always be angry and hurt I have no wish to deny; but, I had to find acceptance where I eventually found it in the realization they never wanted to hurt us - this is all they have to give and it's not enough in my world now.
When I stopped believing I was a victim and instead owned the thing and judged it - this enormous conflict inside evaporated.
It's been similar in all things. I called it reclaiming memories and empty chairs and things but it's always the same process. I stop feeling like a victim who has no power and look at the thing and sooner or later when I look at the thing that has it's fingers around my throat I'm ready to own it and there are no fingers. There is only me entering the ring. And I am here to do battle again.
And one by one they transform me away from the victimhood I learned so well for her and become mine. From mundane examples like watching Sleepless in Seattle and You've Got Mail - which Dianne and I often watched like a mutual friend. I couldn't bear to think about them. I shut them off. I cried like a baby for us. I could feel her empty chair poignantly. I kept coming back and got through them. I haven't seen them for a while but I own the den and the TV and I sit in either wing chair now because our furniture is not a victim of her not being here anymore either. It's just an example but it will do.
I have to do all this. I have no choice because I've already made choices. I'm going to live on. I'm going to see her through this disease. I miss her terribly and I feel lost overall. But I'm not alzheimers bitch anymore which I absolutely was and which I give and gave freely and would do again. But not in this lifetime.
Every single thing of the many things I have in my life (see other posts) again, I own because I chose them and in every one of them the same theme prevails. I was able to stop seeing them like a victim and in that second I started taking ownership.
My remaining shallow friends don't ask about Dianne but do ask about me. Her family goes to great lengths to see Dianne and get her things like ordering cake on her birthday, yet they have completely cut me out of their lives. My job is to stop thinking in terms of who did and didn't do what to us because it's complicated. Only victims think it isn't and not suprisingly victims unanimously agree the thing to focus on is where we have been wronged. I know that because I was that. Now I'm back to where I started from which is that a lot of other people are strange and do weird things to anyone - not just me.
Katherine, I'm sincerely glad. I'm trying to find my way just like everyone else here and I don't think of my bs any different from anyone else's. I know that's I'm just a normal human being again and that was the pot of gold I frankly begged life for. That begging part wasn't what did it though I'm pretty sure.
I still spend inordinate amounts of time combing through who did what and who's like this and getting sidetracked to some ancilliary conflict I just want to walk through again.
I got my invitation to the annual cottage weekend we used to enjoy going to before. Five couples who've known each other since they were 20 years old. If I were invited to somewhere new where I didn't know the people there would be none of that. I would be perfectly normal. Make sure I've brought everything. Be sociable and explore the company.
Because I've known these yahoos so long I can't do that. I have to go through weird rituals that involve whether they breathed right around Dianne and all the garbage I probably don't have to explain to anyone here. They're like part of packing for a camping trip or something where you know there will be misquitoes.
The problem is that even last year I felt perfectly justified thinking like that because it was the only thing I saw and believed in. Now I'm like a fighter staggering in the ring swinging where I'm the only person in the building but I can't think of any other way to be yet and all I really have at this time is my Dianne in the NH, one sister I can really talk to, one good friend I can really talk to and my cats. So I'm quite rich.
I'm becoming aware that two completely different worlds are open to me. In one I bring the baggage and I feel differently about what's happening now because I feel differently about the past with those people. In the other I'm just here now the way it used to be because I don't have preconceptions. I have to pay attention because I don't know anyone and so everyone is a blank slate.
With new people I'm willing to invest in that now and the face value of it. In the other even though I have a comfort zone that I so dearly miss - I can't divorce it from the changes in my perspective that are real.
And there's only one difference between the one person I consider a real friend and the rest of that group. We talk about real things, we admit truths, we remember what we said, and future action proves consistency. He's not the most supportive person in the group and he never asks about Dianne. But he admits things honestly as do I and I'd rather have that than an army of predictable boundries and comfort zones. In the comfort zone everything is lovely. Yes, but...
I'm not going to this weekend and am using Dianne as an excuse. I'm using them as an excuse too. I'm not interested in my old life which I think was way too shallow. I'm not ready for my new life which is all around me waiting. I just want to keep taking steps which feel like life and stop doing things that are my fears and reluctance. That part is working which my sister, my friend, and my neighbours have all commented on and which no one at this weekend knows anything about. I'm out a lot more and I talk with energy and talk differently about my own life. Good because that's helps support what it feels like inside.
I love my past. I don't regret it. But I'd be lying if I said I want it back. I want more and I want new. I don't have a clue what that is yet but I will one day and in the meantime I'm not actually in a hurry because my focus is on having better days. I can see that it's going to be a while before I stop sticking my finger into people I've known 'before'.
With luck I'll know more about what I want and don't want next year. This weekend will be there then too and so will the same people doing exactly the same thing.
I won't invest too heavily in going to visit Dianne in my heart. She will suddenly be gone one day and even though I love her very much, I know that is unhealthy. Everyone in the NH talks about how she looks forward to people visiting and I play along but you have to be crackers to think Dianne has looking forward to capability, recognition capability, or memory capability. She knows that when the bib goes on and the tray gets slid into the wheelchair she opens her mouth and I am grateful she can still do that and chew and swallow. Something in her recognizes my smell, my voice, my touch.
It gives me meaning to help her and be there as one of the team helping feed the group. The women there are like a large comfort blanket and I work to give that back because I know the truth. Their lives are stressful for low wages. And I am going to be hurt badly when she is no longer here and I no longer belong there.
I have no idea what 'closure' will bring. I do know that I'm back on my feet but still fragile. My job is to keep getting stronger where it's crystal clear that the better I feel overall the more I am here, the less things feel like roadblocks, and the more possibilites cross my mind. I would love to tell you what I want in life now but the truth is I don't know what I'm talking about yet. That's ok.
Interesting you should write about this....I got a thank you note from one of his sisters after I sent a sympathy card for her hubby's passing (cancer)...in it she wrote "lets stay in touch" well that pi**ed me off. I have been dealing with her brothers illness for10 years on my own with no calls or notes from her and now after her hubby dies after 2 years illness and she gets what's it like looking after a sick spouse and she wants to have on going contact with me. No! just plain and simple no.
I've gone this fair on my own and will finish this on my own. I not longer have patience for the people that could of been there, be it only a card or a phone call, saying how are you guys doing but never did. Then now when he's in care they are coming around asking what they can do or lets strike up our relationship where we left off.
I was told when I was young that there are jerks in this world and when you come across one you just make a mental note that "hey this is one of those jerks I was warned about" and I let it go. I've done the same thing with lot of family and friends after going through this and I am making new friends but I won't depend on them if something happens. I'm learning to like my own company and stay standing on my feet.
Florence* posted earlier today about the comment "take care of yourself" and to me that can be on the same level as "let's stay in touch".
On my refrigerator I post cut-outs, quotes, magazine tear-outs; whatever I want to look at. One is of an abstract bird and the quote is "whenever someone has been monstrous to you, even if only once, always be leery, always wear your grudge armor". ITA- I like my own company too.
Looking upthread, I read about your dog and want to say that I am sorry.
I'm going the other way now where the feelings expressed were all there for painful reasons where I really did get hurt - but, I want to open up to life and the rabble in it. I want to get hurt again.
I am no longer a rube who's fallen off the turnip truck. My blind faith in the certainty of relationships is gone which was proved imaginary when bad things happened. But I do not embrace defence as the new thing I learned. Defence was all I had for quite some time and I was entrenched in all these things just like anyone with feelings that have been fried by huge breaks in trust.
But it isn't just that I'm lonely and want more contact than I have. Those are true, but it's that I was full of resentment and I began to see that as a problem I don't want.
So I divided up all the people that had really hurt me between those that hated me and tried to hurt me and those who were clueless as to what they were really doing and all of them ended up in one camp.
I don't forget much and my knife is very sharp and I am battle ready. But I really just want to smell the flowers and relax and more. I want to feel good. I'm learning to let Dianne be. Learning to let the other things be is harder because it's more personal.
Ultimately, this is my time to do something more than before. It doesn't have anything to do with any of those people. Both the effort and the reward stay inside me.
I sent out an email explaining to the cottage owner I won't be coming next week. He called me and for the first time he wanted to know everything and talk about everything. Much of the group up there next weekend fall into the disappointed category. But there is one less. One of them came over from the dark side. That doesn't matter either because we all are who we are but only I can make myself happy.
I'll take find your own peace for 2000 Alex. And I've packed a lunch because this don't happen overnight. I must have wrestled with this so often I made Prometheus bored. It wasn't until I actually did care more about me now and had worked through enough things to be bored by them that I started getting traction.
"whenever someone has been monstrous to you, even if only once, always be leery, always wear your grudge armor".
I don't think I want to wear my grudge armor. I think I just want them to go away and leave me alone. I'll muddle through what ever is thrown at me.
Wolf...maybe when he has been in care as long as Dianne has been I'll soften my attitude but right now I'm just not there. I'm glad one of your friends called you and you had a good talk and there was some healing done.
I am moving forward like a rebirth and am now "Amber the single" no longer "Amber the married" where there used to be 2 people that worked together to make a good life there now is one. A few bumps but so far so good.
I took the week off from caring for Dianne and took a vacation. Didn't go anywhere but I did look at myself and my life and this is one long miserable slog I'm going through. Keep your chin up. Dog paddle. Chin up. Keep paddling. You know what??? I feel so frigging stretched and so bone tired at times I could do dry heaves from now until snow falls and my body and mind wouldn't be done howling about how bloody tired I am.
It doesn't help that I don't know what I'm doing and it doesn't help that most of what I hear as advise sounds like quackery to me. It doesn't help that when I look in the windows of those who've escaped early tragedies and are still rolling along that I see them as aliens in a land to which I no longer belong. I loved my plastic fantastic life with the boujolais and the chummy collegiate wallpaper - but, I'm not going to squeeze back in. Life pushed me out here and I don't want back in now. Not like that.
I'm like an old woman on the steppes living in a cabin always having to have a big stick to beat off the wolves and if someone came by and asked how I was I would answer "well, I'm tired" and that would be true.
In many ways I am that old woman who has to beat off the wolves with a stick because the wolves are there. And in many ways I'm that old woman too tired to celebrate that I haven't been eaten yet.
In other ways though I was the slight kid in the schoolyard being beaten by the bullys in their turn. "You're alone now! She's dying and you left her there! Nobody's going to help! This is your life!". There was no home to run to crying. There were no arms to hold me. There were no words of support. There was no one but two cats hoping to be fed.
I've come a long ways through this nightmare that makes Dante's Inferno look like a comic book written by a 12 year old peeing himself under his bed. Here. You. Insane. Good luck getting back be sure to write and goodbye.
I've come a long way through this sick valley of pain and misery looking for meaning I can hold on to or even better cling to desperately. There's precious little out here because I am the desert that withers everything before I arrive to see that it is withered and I am the storm that brings the winds and the rains. I don't know how to turn them off but I do know clicking your high heels twice doesn't work.
You have to want it, you have to open your heart, you have to believe, I say to myself poking the fire with a stick out here on these dark plains of misery. Easier said than done. The wolves keep their distance this night. They know better. This old man does not sleep and he has sharp teeth.
I watch the red cinders drift up into the night sky. Like tiny window scenes of things that once were. As far as I've come and as tired as I am I know I have a long way to go wherever it is I am going.
But I do understand that it doesn't matter which mannequins are in the window or which animals are hunting you just as it doesn't matter how I paint the scene. This is man against himself and where you're standing doesn't enter into it.
"There was no one but two cats hoping to be fed." Well, hop to it, Wolf! Get that food out now! One good thing about cats is that survival is at their core. They are heartless creatures and they do not care about your misery, except to the extent that it affects their comfort or feeding schedule. To the best of their ability, they will keep you alive to ensure that you will do the same for them.
Both my cats died this winter, a few months before I put my husband into LTC. So now instead of four living creatures in our house there is only one - me. I am still wandering around aimlessly, figuring out what to do, but I am certain that my eventual survival depends on getting another cat or two to keep me in line, and the more demanding they are, the better.
Oh myrtle,Sonny has been in LTC for 15 mo. now.My dog and 9 cats keep me going.I have to survive for them, if something happens to me they would be put down,so I keep plodding on.Some life,huh?? Keep writing,Wolf.
Myrtle, consider two females. I've had three sets and they got along fine. They are serious company and I love cat attitude. Each creature has it's own personality IMO. One cat goes to bed with me. I have the lamp on and am reading and she jumps on the bed and flops down repeatedly against me rolling around and bats at my magazine or book. They both love treats and the abused cat loves cream (I've always got coffee going) and she now runs into the kitchen when she hears me and that is where she meows now. She was silent for years.
They're not people but they are living creatures that are my tribe. I am literally reminded regularly that I am not alone and am connected to life in a real way.
I'm also part of a real tribe. My korean convenience store extended family and my grocery store checkout friends and her truly bizarre family, and my own strange family, and the collection of trolls, gnomes, and chicken littles that make up the rest of my garden of delights.
It's hard enough getting along with me. What's left of me can be a real drag at times. But I'm learning how to get along with me too. I was sitting here beady eyes glistening in my glorious anger when my other voice pointed out that this wasn't actually a lot of fun and did we really have to stick our face into our own butt like this. It was a shock to realize it was just me here doing this where everyone else had long left and it was the most liberating thing I've done and the most immediately rewarding thing I've done to sit back and understand that no, I don't actually have to do this. I let Dianne be to be at peace. This should be nothing in comparison.
But I'm not dumb. I know my resentments are my safety valves. I blow it out there where I have nowhere else to blow that's legit. These people really did do these things to me when I was on my knees already. I know says my voice but there's only you and me here - and actually, there's only me here.
You also can't buy this kind of practise. It's priceless.
So yah. They're neanderthals and I'm brilliant but it's me with my face in my own butt. They did this I say to no one. You shouldn't have said that I say to no one. You pretended I didn't ask I slap myself. You argued with me that she didn't have it I yell at the linoleum. Takes me a while.
You're neanderthals. Here's your monkey.
And when I get up and I turn on the radio and that garbage ain't on all the time then I stop being the volunteer loser and start volunteering to win. That happened. They suck. And I'm not doing their work for them. Mark the darn thing. Sort out the arguments. Then put it on mute. Not leave me alone mute. You are done mute.
And when I get up and that bloody Sonny and Cher song isn't playing anymore - then I not only win, I have a new skill. It takes a little time, it takes a number of goes, but the minute you've had it with this thing preying on your mind is the minute you can begin happening to it instead. Nobody else is involved and they are non the wiser that I got tired of going through it and made it shut up and made myself leave me alone about it instead.
And that skill is highly transportable.
I stick my fingers in guilt's eyes. I feel guilt deep down even though I've had this argument dozens of times. I have no mental issues - I have emotional issues. It's like teaching the slow child. She has care I can't provide around the clock and access to medical help very quickly. I have to accept all this and I do better than before so this example is going to go on for some time.
That's like the loud idiot on the bus. I'm stuck with him until I get where I'm going. And I do have the power to tune him out. I just have to stop reacting and actually use it.
Thank you, yhouniey and Wolf. Nine cats! That would definitey keep anyone alive. I also love "cat attitude." I will definitely consider two females. My recently departed cats were boys and one had some very bad habits, so I will go for girls next time.
I just got back from the veterans’ home. Tonight I took my husband to the rec room, where a duo was performing. He really enjoyed it and clapped along with the music. At the end of the concert, they played the crowd-pleaser in these parts, “Sweet Caroline,” which Red Sox fans sing in the middle of the 8th inning at every home game. The whole room full of vets, some in wheelchairs and many with walkers, waved their arms in the air (as is customary) and sang along.
To my horror, I started to cry. It was so touching to see. And it brought back all the summer nights when my husband watched baseball on TV and the one afternoon game we attended each season, which was so much fun. My husband really loved baseball but now he does not even know who the teams are.
Luckily, the ladies' room was nearby so I went in to splash some cold water on my face and get a grip.
Lorrie, sending you prayers, support and hugs. The first few weeks will be the most difficult. Talk to the professionals and let them help you. Just take today. You can do this. You are doing it to save yourself.
Lorrie, I felt the same way. They do adjust. It takes time but I know how you feel right now. I cried every day he was in the ALF and I couldn't bear leaving him to sleep alone. But, as we both settled in after a month or so, I realized what others have said; I actually had the opportunity to kiss him and hold his hand every day and could tell him how much I loved him. I could do that because I could finally sleep at night and I didn't have to bathe and dress him. When the physical and emotional hardships of the day to day care are removed you can be his wife again. I wish I could do or say something to ease your pain but know I am sending hugs to you today.
Hi Lorrie, I hope today went smoothly. I know how you must feel for I did this almost three months ago and I thought my heart would break.
Here is how I dealt with it. Right after my husband was admitted, I became a woman on a mission. I decided to do whatever was in my power to help him adjust. I did not want him to feel he had been abandoned so I went there almost every day, even if it was for a short time. Since we do not have children, I hired our former home aide, who he really likes, to visit once a week. I wanted him to feel that it was normal to be there so I made it a point to greet the other residents and learned the names of the people he seemed to like. I did not want him to feel that he was trapped so on most visits I took him out of the unit and whenever possible, I took him out onto the grounds or for a drive around the area. I still do all this.
I continue to miss my husband dearly and have a lot of private moments of grief but he has not seen them. All he sees is a cheerful, confident, and reassuring wife. As it turns out, my husband has adjusted very well. Maybe this has nothing to with my efforts, but doing all this sure made me feel better.
Myrtle, I had the same game plan in mind as you to a tee, when I placed my husband but it seems to have backfired. Every time he sees me, he gets aggressive and out of conrol when I leave. Last night they had to call police and ambulance and take him away to the hospital. Now Im not allowed to visit for 2 weeks. I wanted so much to support him in his transition and I have failed. I think the next time I see him he will be a 'drugged zombie'.
abauche, I have been following your posts (and Lorrie's, too) and I can hardly believe that this went so badly. I can understand why the facility would want you stop visiting for awhile but how can they not "allow" you to visit? Or are they saying they will kick him out if you visit? Also, you should have a say in the "drugged zombie" issue. I assume you are talking about psychotropic drugs. I don't think they can legally administer them without your OK. It is hard to believe that we are often called upon to make such tough decisions.
I know you must be very shaken and doubting yourself now but don't lose your confidence or cede all decisons to the facility. I don't remember whether you said said your husband was aggressive at home. But you know him better than anyone does and now that you have the benefit of hindsight, you must have a feeling about what went on and what might help him now.
Please keep us posted. Most of the others on this site who had similar experiences say that their spouses adjusted, so I'm hoping that this will happen for your husband and Lorrie's, too.
Why do you think he will be a 'drugged zombie?' Are they applying more meds or changing them? While you can't visit him right now you should talk with staff and ask to be notified of any drug changes.
You didn't fail. They are trying to transfer his dependence on you to the staff. Sometimes having the spouse around can make this more difficult. The problem is not you but his dementia. At a good ALF the staff has been through this many times, it is new to you. If you don't find the staff trustworthy that is a different problem.
2 weeks seems to be the norm for someone adjusting to a new LTC situation. Some people, like my wife, take a lot longer, or might never fully adjust.
Well they thought it best I don't visit for a couple of weeks, no orders. They seem very capable and I trust them. He had bouts of aggression at home, more of late that precipitated my decision for placement, among other things. I have only given him 12.5 mg of serequol as needed and it seemed to work for him. I hope he isn't a drugged zombie but if they decide he needs more than he will just sit and sleep. I will be talking to them daily and see how the meds and behaviour are coming along. I get that he doesn't want to stay there and this is the source of his agitation, but he could be like that at home too, so essentially its the disease.....right?
abauche, it's the disease. 12.5 mgs of Seroquel is a tiny dose and you and he are fortunate that such a small amount controlled him. My husband has never been on less than 125 mgs/day and as much as 400mgs (dangerous) and is currently on 125 mgs/day again. Honestly only when he was on 400 mgs was he a "drugged zombie". The only other time he was a drugged zombie was when they put him on 0.5mgs of Risperdal. Of course everyone is different and I understand your trepidation. Hopefully the staff and the doctor are responsible and experienced and it will turn out okay.
Right. And since he had already started to have bouts of aggression, they might have gotten worse even if he had stayed at home. Also, consider that feeling secure is very important to people with dementia and that any change in environment or routine is upsetting to them. It may be that what triggered your husband's agitation was the change itself, even more than the particular place he is in. But we can't keep them and ourselves frozen in time and place.
As I see it, you went with Plan A. That didn't work, so now you're going with Plan B. Now that you are forewarned and have the facility helping you, it ought to work. I'm keeping my fingers crossed.
Thank you so much for your thoughts and suggestions. I feel addicted to reading this site and your comments. Its because you know and have been there or battling the same war as I am. I will keep you posted as to his progression. Its doubly hard when he is a strapping 6 ft. and young man (61) and if he lashes out......dangerous. There were days I would go in the bedroom and shut the door when he was losing it as I didn't want to be in his face. I hated feeling afraid of my so gentle husband of days gone by.
abauche, we're on this journey with you and care, so come back when you need our support, we'll be here. Your husband sounds a lot like mine - 64, physically very healthy, 6 ft and STRONG! Yes, for a long time he was dangerous and can still get aggressive at times. And he was the kindest, most gentle man I had ever met.
Your difficulties break my heart. Hugs to each if you. When I read your threads I feel kind of minimal in mine, but here goes. Maybe it will help to get it off my chest.
I have an offer on my house. A fairly good one, closing date Oct. 02. I have decided to move back to Alberta so I can have more family support for me. I know, dream on. The inspection is today. I am sorting out all the food that I can't take with me like liquids. I have rented a studio apt. in a house just out side of Kingston where Kevan is in LTC. The woman is a nurse and cares for seniors. He hubby is disabled. There is one other lady living there. This nurse took one look at me and said you are tired and stressed and need to rest. I felt like saying "No kidding?" But I was a good girl. She again on the next visit said the same thing and this time it was in front of Kevan and our daughter. Then I get home and so excited to tell my best friend for 15 years, we went through her cancer and death of her hubby and then 5 years of my caregiver role and his placement. Well I was astounded by her reaction to my new life plans. She was the very one telling me to get a life, make my own decisions and now she told me she has had enough and good- bye. She was so upset because I brought Kevan home and forgot about going to lunch with her. I feel really bad about the lunch but Kevan has to come first. He was concerned about a few jobs he knew he could do but I couldn't and it made him feel good to be able to do something for me. I am really stressed and tired because this move is all on me as well as making sure the future move out west is going along smoothly. I need to make very sure he is going to a good LTC there as well. I have to go and empty all if Kevan's personal furniture to ship it to storage out west as we will not be moving until he has a bed out there. It has been suggested that I move out there now and leave him here alone. I just can't do that. How can they suggest such a cruel thing for both of us? I am tired and stressed but I feel just a bit better now. Thanks for listening.
Jazzy, I am so sorry about your friend's reaction.
I think selling the house now, renting an apt close to Kevan until you find a new LTC facility for him, and then moving out west is an excellent idea. He knows you so you don't want to interrupt the visiting.
I hope you can get some rest while in the apartment. I know you will be busy looking for a new ALF for Kevan but I hope that having the house sale done and not having to care for a house will provide some relaxation for you.
Hi Jazzy, It sounds like you have a good plan. I'm glad Kevan was able to do a few jobs around the house. Being able to contribute to the project must have made him feel good. And it looks like you have found a good place for yourself to stay while you wait for the big move.
I have forgotten to show up for lunch with a friend and I did not even have the excuse that I was distracted by the details of a major move. Fortunately the friend did not hold it against me. Maybe your friend will get over it.
My story is a bit different – my DH has been in a LTC facility for about 5 months, and I am beginning to think he will never really adjust. His background is a bit different. He has lost most of his English, which makes it more difficult for him to communicate with others, although he waves and says hello to everyone. (One of the ladies teases, saying “Hello, handsome", or Where are you taking my boyfriend?”, and another says “Is he behaving himself today?” etc., so they are friendly, but beyond the waving and smiles he cannot verbally communicate.) One lady who sat with him at breakfast and lunch was friendly, and he said ‘she helped me’. I think she was kind and sympathetic when he was ‘lost’, and every time they passed in the hall, they would ‘high five’. She had a stroke which we witnessed, and he was sad and upset – I told him she was just going to the hospital for special care – when she came back a week later, he was very glad to see her, much diminished, and although he couldn’t express it, he points at her and smiles and touches her hand. This disease is so cruel in that you are unable to say what you feel! Now he speaks mostly in his own dialect, and it is much more difficult for me to understand him – I know him and many words, but it seems that a lot is garbled in any language. I just feel he needs me desperately, and I have to be there. I go every day (now from about 12:30 (after lunch) to 8 p.m. (when he is put to bed). He has no concept of time. I tell him every evening that I was be there at 1 p.m., but most of the time when I arrive he is crying, or begins to cry on seeing me. He says that he waited and waited, and I wasn’t there. He was always private and did not show his feelings to others. I’ve been advised by some to take time off, and by others who say it is just too early, and he’s not ready. I feel I cannot NOT come as he will feel abandoned, which happened to him before. The staff at this LTC are caring and kind, and he feels comfortable with almost all of them. They tell him , 'she's coming, she's coming'. I’ve come to love the residents. On days when he gets physiotherapy (3 x a week with the physio and asst.) who assist him with his walker around the unit two times. Other patients tell me it is a joy to hear him count enthusiastically with each step. He was always very fit and athletic. One ‘neighbor of his’ observed that on the other days he seems sad, upset and weepy. I have been racking my brain to find something that he could do on his own during these ‘other’ mornings , the simplest of things that he can manage (he doesn’t want to join in activities such as exercise, etc. unless I’m there), and there is not much he can manage anymore. If anyone has any ideas I would truly appreciate it. After I arrive about 12:30 p.m., I shave him and brush his teeth. Then I take him (wheelchair) over to a bench in the park and we watch the Canada Geese or just enjoy the beautiful grounds, and listen to music. I am so glad that many of your spouses have settled in. I hope that someday soon he will also adjust.
marg78, what a wonderful wife and caregiver you are, I am proud to know you through this site. Your efforts are amazing, you couldn't do any more. Imagine his distress without your support. Hope that it gets easier for your DH soon and that his sadness lessens All the very best to you, cassie*