I married a highschool sweetheart where in highschool I had mad crushes on five of them. I've been married since I was 19 but I can remember over thirty different women I've shared something with. I've had close couples friends all my life where I believe in getting close to friends (and never like that). My wife and I talked about absolutely everything more openly than many. I have over twenty nieces and nephews where some still reach out to me but we had no children by choice. I worked all over north america in three different fields. I've been self amused (retired at 53) for eleven years now and I've lost my wife to AD whom I'm still watching over for the eighth year now. I have a rich range of experiences to draw my thoughts from which doesn't make me right about anything.
One of the first things I draw out is human self conception and it's twin which is the denial of that. For example shy people don't generally question the rightness/wrongness of believing that shy is the correct way to be. Ask a shy person if they think everyone should be shy or if it's really a form of self denial and you still won't start up a conversation. But you can learn from that and what you learn is that the shy person conceives themselves in terms of the thoughts of others. Whatever random and varied group might be in the room at the time. Shyness in my view is usually innocence and/or self censuring.
I pick shyness because it's benign to all but the person which I know from personal experience. I was very shy and learned how to cope. Most people laugh in my face when I say that. Which is really rude frankly but a fabulous indicator that the person is taking in 'now' and does not conceive of my 'then'. When an electrician says "there was a time I didn't know anything about electricity" we don't laugh in his face (or hers).
But when you're the person in the room saying the funny things and telling stories and frankly showing off, then you're not allowed to also be sensitive - even though; if you think about it, all comedians have to be sensitive or the room will cut them off like a knife.
When you add the number of decades I and anyone in my league have been around, you know there is all sorts of interesting baggage that has come along and it could not be otherwise because time and experiences change people - and of course always for the better. They're battle scars. We earn them in our own ways. Call me a cynic but I believe that falling in love in innocence goes out the window somewhere in our twenties (hopefully). At sixty four life is not pumping me full of hormones, I've seen my penis 10,000 times, and it's a race whether my teeth fall out or I become one giant mole first.
Do people fall in love late in life? Yes they do. Those that actually leave the house other than to get things that is. Which is not me at the moment. That's why this is a scouting report. I'm just looking around the lay of the land early where the major reality is that I will be a single person and even though my own future has been on my mind for years - I've never really given it much thought.
At the moment I'm not happy that the only two solutions to having a full life I can see are getting a full time job or having someone move in. I'm brilliant; three years alone and this is all I've come up with so far. The problem is that I want to go out and do things but I don't have anything I want to do. I'm filling in one-offs like go out with friends or go and see this or get some fresh air but they're all right now things. What I don't have is a feeling that I'm about something. That there's some main thing. And it's sad that I can understand so many things; but, I can't conceive what I am.
Time will show me the truth. When I am single after some time I will know whether it's still like this which is I don't really know what to do with myself - or closure and time have made me feel differently.
I believe what I feel I'm missing is a role. I don't serve a role I invest in. Instead I am a tourist in my life. I'm grateful for how I've been able to open to different specifics in my life and how much I can actually enjoy those or at least explore them. But this is not sufficient to make me feel fulfilled. I may be learning that I am a role person (which embarrasses me) and that my future is to try and choose a role I can believe in and grow with.
Another way to possibly say this is that deep down I need something to really care about beyond things like cats or painting or sports. I may be learning that I have such a need and will never settle down unless I find a way to fill that.
I don't want to give up on the idea that doing whatever I want every day isn't enough. I'm not in a position to make any judgements yet anyway because I'm still married and I'm still watching over us. I have to be honest and say that the idea of looking for romance leaves me cold. I believe in it - just not for me. I have no trouble pulling out my feelings and that just isn't there.
What is here is the truth that I don't know myself from Adam. And that I'm discovering who I am and that I'm not what I thought I was because Alzheimers is revealing that. What that tells me is that I'm guessing right now because I'm definitely changing.
I didn't know new beliefs change you. Now I do. I always knew talking/hoping and doing/working are not the same things. Every appearance of guilt was a battlecry to drop what I was doing and attack to kill. I did that for years and am ready now. I doubt that's in most repetoires. Every appearance of depression was a cold reply that I will outlast it and every thing I added into my life depressed my depression and so it went for years. I live to fight for myself and I never ever stop. I never believe anything else. I never believed the clinical conditions were me and always knew they were my enemies and I absolutely had to kill them where any one of them winning would rob me of my life. You are not me. You die. I live.
I'm guilty of nothing but making some mistakes while I earn my honour and keep my vows at great cost. Bite me.
I have bigger things to fight. I just made funeral arrangements. We can't possibly be that far away now. I'm going through this and I noticed I couldn't find a thread that documented from before to after. Not the funeral. There's no service or viewing. It's just us. I mean to document one journey into discovering 'afterwards' (hi Carol). And anyone who wants to say anything about their own thoughts or comments is more than welcome as always.
What is the topic? Going to 'afterwards'. Any one of us including me
I still don't know where I belong in life. I did fine while DD was here. Now that she is married and gone I feel I have no place in life. I have been a wife, mother, employee for 37 years. Now I am none of the above. I know I will always be a mother, but not the same now. I do wish I had a man in my life, but I want him to be my DH. I don't want to find someone new right now. I would hate to have to explain myself to someone new. All the lumps and bumps and scars. So I start over, doing what. It is not new, so many have had a loss in their life and start over.
I spent the last three days in my pjs. And it felt good. So guess I am doing ok. Before/after it is all the same to me now. Loss and sadness. : ( Then again it is only one more month till the one year anniversary of DH passing.
I don't think you can really get ready for "afterwards." When your LO is still alive, it is the endless, grinding, relentless caregiving, with the exhaustion, body aches and pains, and loneliness that goes with it. Then when that is suddenly over…one minute DH was alive, and the next minute he wasn't…there you are. It's like a whole new world…an empty world. DH has been gone for two and a half months, and while I feel physically much better (sleeping, taking long walks--such luxuries), emotionally it is as if I am drifting around in a vacuum. There is a huge emptiness everywhere. Because we moved to a different state, and because I couldn't get to know anybody or participate in anything, it is as if I just landed here in a spaceship from a far-off galaxy. I dutifully go to Mass on Sundays, and there are ten thousand people in there…and I don't know any of them. It is so weird. I know intellectually that I need to start making some connections, but I don't have a clue how to do that…well, yes I do…but I don't feel emotionally ready to make the effort. I think I will join choir after the first of the year, and possibly join a writer's group that meets nearby. But I don't really feel like it. I think for me, at least for the foreseeable future, "afterwards" just means a lot more loneliness and emptiness…but it is by my own choice…because I just need this time of solitude and reflection to accept and get used to the loss of DH. I don't think it will be forever, but it will be for awhile. I have made Saturday pretty much my "vegetation" day, where I wear grubs, don't take the car out, and just have a day to "zone out" and think about DH all day. (Monday through Friday I have the grands and also make dinner for DD and the kids, and Sunday I make myself put on an outfit and go to church…also Sunday is my computer-free day--the one day a week I disconnect from MacBook and iPhone. I forgot about it today, and have been online….bad me.)
I always hoped I would die before my husband so I wouldn't have to cope with being alone. I know I was spoiled because my husband liked being in charge and taking care of me. I always had a nursing job that I loved and was content to let Bill take over everything else. I was a somewhat spoiled only child-but was never alone because of being gifted with a large extended family. I went from home to college and dorm life to getting married-never totally on my own. As Bill declined I was forced to take over everything. Friends vanished. Then Bill was gone and I had to figure out how to create a new life for myself. Scary at first, then invigorating as I realized I could do it. It's over four years now. It still hurts to see older couples loading groceries together, selecting plants for their gardens or just holding hands. On the other hand-I can eat peanut butter out of the jar, the counter tops are always clean and I can leave dishes in the sink. A trade off? Of course not. It is what it is-period.
Almost forgot-this is the tag line on my e-mail "We must be willing to let go of the life we planned so as to have the life that is waiting for us." ― Joseph Campbell
bluedaze, The quote from Joseph Campbell is perfect - it is exactly what I got out of Wolf's comments when he started this thread: What is the life that is waiting for us? (My apologies to Wolf if I misunderstood.) But it does not resolve the question of how we will recognize the life that is waiting for us.
I think I'm a long way from going to "afterwards" -- my husband has only been in LTC for six months and I am still very much involved with him -- but I fear that when he declines to the point that he no longer interacts with me, I will be adrift. I have no children or grandchildren and only two nieces, who I like very much but do not dote on. Although it would be fun to have a man to pal around with, I have zero interest in a romantic relationship. I don't want to waste the rest of my life dithering about what kind of life to pursue or to get ready for. I just hope I recognize opportunity if it appears.
It's been a year this month that I lost my DH. I've been 'adrift' ever since. Sold my house, furniture - everything - and moved to N Florida near my sister ( my only living relative), her kids and her grandkids. It seems so strange - I never lived near them in all the years after I married - now I don't even know them. I seem to have nothing in common with them. I love my new apartment, but have only made one friend with whom I can share a glass of wine! This is a small, rural area and nothing to do, have to drive 25 miles to a decent restaurant or grocery store. So....I am still adrift in the 'after' and have no idea what or where to go to change it. I'm bored that I have nothing to do and seemingly no purpose in life. Been sick with flu for 3 weeks, so that hasn't helped! Will probably lose my dear little Millie doggie who is 13, has bladder stones and tumor in bladder and also has dementia. She was DH's baby and the dementia started after his death. Like each of you - I just want my life back! But as Nora said ..it is what it is....
I try really hard to live in the present. I cherish the memories of the past, but don't let myself get stuck there. Neither do I spend my todays worrying about my tomorrows. When I first joined this site in 2008 we were already in stage 6 and I was really, really afraid of what late stage would bring. I gleaned insight from our members here who were in the later stages, or had already lost their loved one. Through their sharing, learning how they coped and seeing that they did indeed survive, gave me strength to fight our own battle.
Likewise, when our "after" comes, I will look to our warriors who have earned their stars* and read what they share in the widow/widower thread. I hope to never have to go upstairs to that thread.. but it is a comfort to know it is there, to know all of you who have lost your loved ones are still here to support us. It is a gift you give us, and I am very grateful for each and every one of you!
Wolf, I don't dig as deeply as you do for meaning in my life but I do question what my purpose is now that my husband is in a memory care facility and what I am to do with the rest of my life when he finally dies. I was brought up Catholic (loved today's joke!!) and we were taught to live Jesus' word by serving our neighbors. It's the one teaching of the Catholic Church that I still totally believe without reservation.
With all of that said, I must say that I walk around in a daze most of the time. Can't figure out what to do other than to watch over him and be there for him. Otherwise, I feel like I'm wearing cement boots. I can hardly move, can't pull together a coherent thought, and have no motivation to do anything. This has been going on now for 1.5 years. I tell myself some days that it's time to get off my duff and do something … anything constructive. Yet, one call from the ALF or one bad afternoon with my husband and I'm back in this suffocating fog. At least I don't guilt my lazy old self. I shed that very unproductive Catholic behavior a long time ago.
What strikes me in reading the posts on this thread is that we all seem to have issues of being adrift…not really having meaningful new lives for ourselves (or at least, not yet) following the deaths or placements of our spouses. Hmmmmm. I don't have any answers, but at least I can see that this is a common situation. Maybe we can help each other with this.
My DH said, "I'm the justification for your life now, aren't I." It took me aback, both that it was becoming true and that he realized it. I'm trying to step away from that because it's not good for either of us. We are early in this journey.
I tried for years on an ongoing basis to keep up my own activities and interests (writing and music--things I could do at home while caregiving) and kept my job as long as I possibly could--a huge part of my paycheck was going to pay his aides for quite a while there. Even with all the struggling not to become totally consumed by the Alzheimers spouse life, it happened anyway. There just isn't any way not to be consumed by it. I'm an RN by profession, 25 years younger than DH and was quite healthy and strong, knew what I was doing, knew the importance of taking care of myself as well as taking care of him…and Alzheimers won anyway.
Now my mission, I guess, is to get up off the mat, recover emotionally, physically, spiritually--and move forward finding new meaning in life--a reason to get excited about the next maybe 20 years. Right now, I just don't care much. I'm extremely skeptical of new "friends", having experienced the isolation of Alzheimers caregiving…who's to say those "friends" will be there in times of need, any more than former "friends" who abandoned us were? And I'm just too tired and jaded to feel enthusiastic about new interests or endeavors. I've said many times on this forum and to my relatives that I'm taking this calendar year to rest and reflect--taking a big "time out" from life--and just letting myself heal, if that's even possible. So this is the "afterwards"…..at least for me at the moment.
I was a longtime caregiver, like many of you and my dh passed away 5 years ago. We were together 24/7 53 years. We worked together throughout our married life, as small business owners. I went from my parents home directly to my husbands and we raised 3 children. I had the same fears and questions as most of you do, I think we all do. 1 year ago I was introduced to a widowed gentleman whose wife died 7 years ago from cancer. I never anticipated I would fall in love again and be dating at 76, but I did and I am. There CAN BE life after death but you have to be open to the possibility. We are not planning to marry because while we love each other, we realize we each "need our own space". He owns his home and I own mine. We are together a few hours most every day and my kids tease me saying, "you are joined at the hip". He feels strongly that he does not want to again be put in the position of doing DNR again, and I don't either, but we both still realize that we would be supportive and attentive to participating in end of life care, were it necessary, and let's be honest here, that situation will most likely occur in the next few years. He is 74 and has COPD and gets breathless frequently and I have Cornary Artery Disease.
The whole point here, is, we have a "second chance at love". If he were to leave me tomorrow, I will never regret the year we have had together. I would miss him terribly, just as I missed my husband of 52 years. One year or 52 years - I have no regrets about being married or sharing my second chance at life - with my new love. Put yourself out there and be open to new experiences. You won't regret it. Don't wallow in "what might have been" because there is absolutely no way we can change the past. There is a wonderful world out there. Enjoy being alive. Join a new organization, revisit old hobbies or find new ones. Get out of the house every day and do something, even if it is to just go through a McDonalds drive through for a iced tea or coffee. I enjoy this most days, and sometimes I will sit in my car and watch the cars go by while enjoying a special beverage. I can tell you, love the second time around can still be as exciting as the first one, if you find the right person. Different but exciting. Blessings...
Enjoyed your post, Imohr. I remember the time when you were a wonderful caregiver for your DH. I read your posts back then with interest because your husband was bent over like mine. Can't believe that was 5 years ago. It's so great to hear you've found someone to share your life with.
lmohr*, fantastic post!! You and I joined Joan's the same month back in 2008 and I just love you! I am remembering posts from long ago when you were pretty certain you would never fall in love again <smiles>
Once again we notice that those that meet someone move on better than those who don't which is a good thing but is not going to be the road for everyone even if they want it to be. What would also be good is if humans knew better how to advise people how to help themselves approach life afterwards.
It sounds like Elizabeth is doing one of the things I did. Giving herself the gift of some time by living the committment that this time is for healing and quiet as much as possible and other things that can wait don't create anxiety or prey on the mind as much - if we really have authorized ourselves. If something MUST be decided ok.
That worked with me making funeral arrangements. It seemed unimaginable three years ago. I just did that last week and it wasn't hard to do then. It's the same with what I will do with my life. I know I'm lost about that but I also know it's stupid to put pressure on myself in something I don't know the answer to.
The thing is any one of these single things doesn't solve what is basically a soup of issues. And no soup analogy touches the heart of the problem. The problem is that the caregiver loaded up with a soup of (almost certainly) serious emotional and mental issues must find their own solutions from what is basically a deep hole.
We are given no information, no roadmap, no serious councelling, and no feedback. If we look to any support group we might have like our children - they are grieving and they aren't qualified in what a person needs to get back up on their feet (feel fairly neutral again).
What each person needs is markers because each person's 'normal' is something unique and then each person needs a personalized program that they can at least become familiar with. It's not like a gym because what we're really trying to do is get our feelings and our thinking back which we need to hope to find any comfort zones again.
Guilt may be a good place to start. Can anyone explain to me why any one of us would feel any guilt whatsoever? Would anyone care to raise their hand if they don't feel any guilt whatsoever?
What's wrong with this picture? We ignore our feelings while we are wracked by guilt. Every single one of you has or will have survivor guilt which I say is tremendously deep. That's just one of many flavours. Everyone here with a few exceptions has cringing memories and blocked memories of how you reacted like a human being instead of an unfeeling caregiver at certain times. Everyone has horrors in the real sense of the word horror of things you've seen happening in front of you.
I'm still just on guilt. No one. And I mean no one has shown me how they overcame this except with time and 'acceptance'. What the frig does that word mean? No one can define that either.
I'll tell you the road to acceptance and the afterwards for most people. Endurance. How pitifully sad. I don't even have to say 'caregivers' because it applies just as well to any other arena of loss. How pitiful is that?
If you read the Residence thread you will see that I put myself in an insane asylum and joked that I was the patient, the doctor, and the floor sweeper of that asylum. I had to. There was nothing I could find that went before me. There was no Heal Yourself By Yourself From Multiple Traumas For Dummies.
The box we are in is that pervasive and powerful saddness is the emotional normal where I can go through six simultaneous forces besides guilt that work on us. Like a distorted Stockholm syndrome, we learn to deny ourselves and endure beyond exhaustion (somewhere all of us did that) where we don't recognize that what was once our friend is now our enemy because we are not trying to endure the hardship any longer - we are trying to find our way back.
Who has read anyone say they now have to shed what served so well and do the reverse? How many thousands of times have we talked about enduring and grabbing the rope to endure and staying strong to endure and getting through the night to endure - BUT NO ONE SEEMS TO GIVE A FLYING ABOUT UNENDURING! EVER!
Do you know what unenduring means? Feeling yourself again. Not like you're enduring life. Well I lost my spouse. No you didn't. The couple with the heart attack lost a spouse. You were tortured for years in every terribly serious way that sentence would read in a war zone. Tortured constantly for years. Take it in.
Most spouses don't get depression BEFORE the heart attack. Most spouses don't have the screws kept on them for years AFTER they have depression. Most spouses are RELIEVED that their spouse passing released everyone from the torture. Most spouses have their tribal network shattered - cancer patients don't, heart attack victims don't, actual torture victims don't.
On my fridge is a piece of paper that says "KILL GUILT". It's in big bright red magic marker. On it I have written over "He died". That's been on my fridge for two years but what I wrote over it is one year old. I live to kill guilt and there aren't hardly any of the little scavengers left.
In my opinion no one takes any of this seriously enough and it's the craziness of people that lets them prove how strong they are in hellish circumstances and yet they won't lift a finger for themselves in any serious way beyond hoping things work out for themselves. And in most of them you can hear the same refrain. Self criticism.
It's real, actual pathos or it would be if it was seen by humanity.
When some of those who have lost their spouse post and tell how long, it makes me realize how long we have been on this 'journey'. I joined in 1/2009 and many lost their spouse that year. Time goes by without realizing it then one day you look and see it has been 6+ years - no wonder I am tired.
I have plans for when he is gone - if I am young enough and still able financially. Only time will tell.
Today is 1 yr since my DW passed away. Much like a Wolf I married my high school sweetheartI was 19 she 17. We enjoyed much success and had a fantastic loving 53 year marriage. We retired to an beach front home in about FL paradise 15 yrs ago. AD stole her mind, but she never stopped smiling. I was able to care for her single handed untI her final days. I now owe a great debt if gratitude to Hospice grief counseling. Their counseling which I accepted.... You have no woulda, coulda, shoulda's. You've spent the last 7 years totally devoted to your wife.. You have no regrets, you're 72, it's your turn live and love ..... In March I met "A". We have not been apart since that first evening when we met we met. Our repetitive thought that night was and remains today... "I never thought I'd feel thus way again." There is a life after the *
marty, always glad to hear you're doing well. Remembering how difficult the last weeks were for you and your wife. I am certain she is at peace after such trying final days. I will always remember your story about the poem she left in your tux; it always makes me tear up. I truly hope yesterday was filled with loving memories.
LFL Yesterday was truly a unique day sharing; with my daughter's brothers in law, and "A" No negative thoughts only good loving memories. Mutual friends learn of the significance of yesterday and insisted we join them and others for dinner this PM to celebrate, using their words, what was and what now is..
Lois - nice to hear again how you are. I really was thinking about you just this week and wonder how the relationship worked out. We e-mailed briefly you may remember and he had just come into your life the last one I received. So very happy for you!! There is life after for some. My sister married again at 76 -- they had 10 years before he passed with cancer. She told me this was the real love of her life altho she had been married 40 yrs to someone else. She really never knew true love. As for me I had 60 + years with my first love and am not remotely interested in another man. I never thought about having survivor's guilt but maybe I do. I always thought it was so unfair that Frank had so much illness and I was and remain very healthy. He didn't complain about all the off shoots from so much chemo over 30 yrs. When dementia set in and I realized he wouldn't beat this one I felt like I was suffocating. It took a long time coming to grips with something that wasn't going to be "fixed". So here I am two years later still trying to find myself. Sure not looking forward the coming holidays. This will be the third season without him and I just look forward to January.
“Your perspective on life comes from the cage you were held captive in.” ― Shannon L. Alder
Wolf, speaking only for myself, I believe the reason we hear more about the enduring part verses the "un-enduring" part of the disease is because that is what the majority of people need more help getting through. By the time we reach late stage, most have been through the ringer, have built better coping skills, and have come to a place of resignation, and yes, acceptance of what the future will bring. There is little left to say that hasn't already been said once late stage is staring you in the face..... And possibly also because the process of grief is so very personal for some that they choose not to share the deeper pain they suffer publicly. For some, like myself, it was too private to delve into with even my family. Sure I shared here the very surface of the profound mourning I experienced, but the majority of the pain, that was mine and mine alone.
As for a definition on acceptance... perhaps the reason you feel nobody has ever been able to define it for you is because it will mean different things to each of us. Our truths and the way we each process our grief will also be unique to us individually. Personally I don't find endurance and acceptance to be "pitifully sad".... to me they are marks of strength. What we cannot change, we endure. I have found this to be true with most things in life, from physical pain to emotional turmoil.
Life is full of heartaches, letdowns and things that torture our minds and body. We have to be in the pain to work our way through it of course.. but for me, there also came a time when I just had to stop reliving the pain over and over and over again in my mind. I could drive myself absolutely mad thinking about the whys and what if's of my Dad's death to suicide.. I did for awhile in fact. It is with great effort that I simply do not let my mind "go there". No amount of my suffering now or since his death can bring him back... and frankly, it just hurts too damn much to keep torturing myself. I have endured his loss. It STILL hurts, it always will I suppose. But it doesn't consume me anymore. Neither does the losses of Lynn to dementia.
"There are things that we don't want to happen, but have to accept, things we don't want to know, but have to learn, and people we can't live without.... but have to let go."
"I'll tell you the road to acceptance and the afterwards for most people. Endurance. How pitifully sad. I don't even have to say 'caregivers' because it applies just as well to any other arena of loss. How pitiful is that?"
Wolf, I apologize. The written word is a tricky thing, I didn't read this the way you intended. Sorry about that.. forgive me? ((hugs))
No, I'll take half of that. I should have said enduring healing is nuts. It's me that's out of step. Not to entrench but I see almost no one who has benefited from their coping skills. I strongly believe it is wrong to think that our own pain is personal while our own pain directly from dementia is not. These aren't arguments to you but to what I see as pervasive.
The time comes when the person on the soapbox gets down and goes and does something else. I have no gripes with you or with anyone here. I have changed my mind about the value of my intention with this thread.
Life can be good afterwards even when you're early and not knowing what to do with your life isn't the same thing as not enjoying it. I had The Grinch That Stole Christmas on cooking dinner with the phone beside me in case she worsened. I was saying the lines ahead of the actors trying to get in there before the grinch award scene (and a check). It may be time to just be grateful and get on with it.
Dianne has bounced back. She rehydrated and fattened up after days without food. Some are happy about this but I say they didn't read the program. I know what I'm seeing and she's tired. It's time to slip away quietly. I got a beautiful urn in her favourite colour and it matches the massive dried flower arrangement we both picked out at an art fair decades ago. Lapis Lazuli is the colour. One of the oldest known. Lapis Schmapis she would say. But she doesn't run the place. I do. And I say stop lollygagging around and get a job!
In short.Wolf, I too wonder what I want to do when " I grow up"..... At present, my world is centered around getting out to do things that need done, grocery store, pharmacy, gas station, and getting the house in order. The fun part of this, the exciting part, is the new lighting, driveway and now a major landscape that I put my creative juices toward. So there is satisfaction in that.. But past that, when the rubber is going to finally meet the road, I am not sure what gear to put the volkswagon in...go, reverse, or how long will I still be in idle? Being that 17 year old about to go to college kid again is the pits.