Just had "It's Never Too Late to Begin Again" delivered. Thank you, elizabeth. You convinced me I ought to read it. The same book order also contained, "Seven Brief Lessons in Physics" by Carlo Rovelli. I cannot say enough good things about that little book and the way it expanded the universe of my mind.
I just took Julia Cameron's book back to,the library. I am back,doing morning pages and weekly dates with myself. I did have some problems answering some of the questions that she posed at different times in my life. Will probably get it again and try a second time. I know her first book helped me a lot years ago but I stopped doing the morning pages when he got sick. This recovery seems to be taking a whole lot longer than I thought. I feel like I am climbing out of a long dark tunnel. There is some light coming in waiting for more.
I agree with everything you've said there Elizabeth and thanks for answering.
Until we can see a way for ourselves, we don't. And until we can gather enough internal resources to just stand where we are and look around, we haven't. This starts out as overwhelming as everybody knows and that's a serious thing. There is now far more on the widow's thread about the realities of this than there was before and I think that's a very good thing. Right?
Whether those that come behind us read my long meanderings or follow your more open story - there are now more germane, realistic, and useful things on offer on the Widow thread that are specific to becoming one. That was my goal as I said.
I started the journey somewhere else idea for that very reason. It caused contention as we may recall about what the main board is for. I titled it wrong. I should have titled it 'Afterwards' which may be something people would search for later. As the board gets an overhaul, Joan is in the same place as we are and we can then see what she decides. In the meantime, and nobody has to agree with me, I think becoming a widow/widower is the start of the journey somewhere else.
I'm about six months behind you but I think you might agree everyone has their own timeline and their own set of unique issues to face. What we're all looking for is things that might help us in some way. The Julia Cameron book is a perfect example of how specifics posted here can be helpful.
I couldn't possibly tell you how useful a comparative database of how grief was experienced by long term caregivers would be. I have almost nothing that can help me see whether my own experience is unusual or something I should do something about to help myself. Is what I'm feeling within normal parameters?
Here's a few things I've found:
"Coping with grief and loss tip 1: Get support
The single most important factor in healing from loss is having the support of other people. Even if you aren’t comfortable talking about your feelings under normal circumstances, it’s important to express them when you’re grieving. Sharing your loss makes the burden of grief easier to carry. Wherever the support comes from, accept it and do not grieve alone. Connecting to others will help you heal."
I see these comments often. It's part of what made me push on this topic in earlier months. That's fine, but my major concern 18 months later is that I might be doing something that actually makes things worse. Many sites talk about 'complicated grief' which generally is when grief either starts worse or gets worse because of the way we are dealing with it. So what is complicated grief?
"It’s normal to feel sad, numb, or angry following a loss. But as time passes, these emotions should become less intense as you accept the loss and start to move forward. If you aren’t feeling better over time, or your grief is getting worse, it may be a sign that your grief has developed into a more serious problem, such as complicated grief or major depression.
Complicated grief
The sadness of losing someone you love never goes away completely, but it shouldn’t remain center stage. If the pain of the loss is so constant and severe that it keeps you from resuming your life, you may be suffering from a condition known as complicated grief. Complicated grief is like being stuck in an intense state of mourning. You may have trouble accepting the death long after it has occurred or be so preoccupied with the person who died that it disrupts your daily routine and undermines your other relationships."
And from that there is a list of signs that we may have complicated grief:
- Intense longing and yearning for the deceased - Intrusive thoughts or images of your loved one - Denial of the death or sense of disbelief - Imagining that your loved one is alive - Searching for the person in familiar places - Avoiding things that remind you of your loved one - Extreme anger or bitterness over the loss
That list and others like it is helpful to me because it's clear I have grief - not complicated grief. But I also need to understand what is going on with depression:
"The difference between grief and depression
Distinguishing between grief and clinical depression isn’t always easy as they share many symptoms, but there are ways to tell the difference. Remember, grief can be a roller coaster. It involves a wide variety of emotions and a mix of good and bad days. Even when you’re in the middle of the grieving process, you will have moments of pleasure or happiness. With depression, on the other hand, the feelings of emptiness and despair are constant."
- Intense, pervasive sense of guilt - Thoughts of suicide or a preoccupation with dying - Feelings of hopelessness or worthlessness - Slow speech and body movements - Inability to function at work, home, and/or school - Seeing or hearing things that aren’t there
That sort of list helps me see that even though I do have depression, I don't likely have clinical depression and I left the school reference in to show that all of the sites that talk about grieving are doing their best to cover things. Long term fatal illness caregiver grief should be in it's own category but may just be me that thinks that would help others. Do Parkinson's caregivers have identical concerns? Stay tuned to the next century when society may or may not give a damn then either.
At any rate I may not have grief on a stick, I may just have grief.
From the above: "If the pain of the loss is so constant and severe that it keeps you from resuming your life, you may be suffering from a condition known as complicated grief."
That sentence is there because the writer assumes you have a normal life to resume which grief is keeping you from. That's a true concern in most cases of grief but it is not sufficient for LTFICG: Long Term Fatal Illness Caregiver Grief. When the life partner is the person who passed PLUS when the there is no normal life to resume, then you need a new category and you need to compare like within that category. Some of us do have to go back to work while some of us have to build an entire new life.
When we do have to go back to work, then those we worked around before will be able to spot changes in us more clearly than ourselves. Even inattentive people can catch on when a person is 'off'. I have such a thing with family (my sister) and friends (two males) and even neighbours (who notice changes in me). The only reason I have that is because all the people I mentioned are opinionated. They tell me.
One of my concerns eighteen months later is whether I'm having unusual feelings or problems. That's partly why I've been looking through grief sites. The very first thing I know for sure about self diagnosis is that only stupid doctors do it for serious issues. For example, the psychiatrists that analyse themselves should be sent into analysis. That kind of quackery is exactly what I've been doing for years now and is why in the resident's thread I called this whole part an insane asylum where I was the doctor, the patient, and the floor sweeper.
The reason I believe our kind should be in a separate category is:
- the period of self denial and drain on us is usually measured in years and the cost of that can easily reach clinical levels - the loss of our life partner is a severance that exceeds the loss of a parent or a lifelong dream by multiples - the time that passes deeply removed from our normal state increases the extent of detachment and the effort of reattachment to our normal state
The person who's spouse drops from a sudden heart attack deals with only the second one and the same society that doesn't look here treats that as a very serious life event. If you're reading this, you face all three during the same period.
My issues eighteen months later aren't grief. I have some but Dianne grief is the least of my worries. I don't have any issues because it's all seamless and integrated. She enters and exits references and thoughts every day. I don't feel anything much is unresolved there. I think of her as she was and in some ways I think of us and the disease. It's clear what that did to her but it's not true that Dianne was Alzheimer's or that Alzheimer's was Dianne. The more I absorbed the specifics of what all did and didn't happen in those years - the clearer that became. Dianne was Dianne. She got an awful disease and that did things to her and to us but that's the full extent of that story.
Where I found myself and what I was when she passed and how difficult it is to integrate into what I have now - those are my problems. And those problems are hefty and have clout. I can do or say anything I want but the reality and seriousness of that fact remains powerfully pervasive every day because it is the raw truth of what I face. Not the junior swing set of grief which love had no problem absorbing in exactly the right amount of time. Dianne is dead and gone but I love her and that has no off switch. I'm fine with all that now that I'm mostly through the brutal bath of unmitigated grieving for her. That was truth too and I'm fine with that too.
I'm largely bored with old grievances. I can't be bothered to mention them specifically. The third degree steam scalding it feels like I went through did things to me though and I still operate within unreasonable reactions and thoughts about things because of that. Fear of things going wrong, fear of things turning on me, anger at things I read about or see in news, empathy for others, being in a situation I have no control over, feeling willingness to amuse myself - there is a wide and varied collection of effects that normally would not be how I think or see things; but, which are the diet of my days.
Those paragraphs are about the first line in my LTFICG categories. When I add in the third line the world really did change in the ten years or so where AD took over our lives and thoughts. I found myself becoming a senior citizen during grief and that was another shock. I'm in a city I thought we might retire in but where she and I and we didn't actually spend time getting to know. I had no plans to be single or to entertain only myself and have had no cycles to form such ideas. I'm a stranger in my own life and that is as true as it is unhelpful.
That might as well be the caregiver motto. Those are also my main personality characteristics now. No coincidence that.
Which is why I'm composing this up in the attic. I'm rummaging through the dusty boxes looking for some old things I hid away here somewhere. I hope they're here somewhere because I want them now. Willingness, enthusiasm, relaxation, optimism, and a host of other qualities that came and went naturally. They just have to be here somewhere. I did the endure and protect. They're not helping anymore the way they did. They're in the way now I'm starting to see. I hope that I can find these other things before too long. I found hope. That's why I'm up here rummaging around. Well, that's not the full truth. I want those things and I have a motivational range I've never had before. I don't ever want to feel as lost as I have these years again, and I don't have those very useful feelings I'm looking for. I hope that I can start finding my way back to some of those feelings now that endure and protect have stopped helping.
....
The main virtue through all the transitions may be patience. The transitions for LTFICG (Long Term Fatal Illness Caregiver Grief) involve elements of getting over and of catching up that are not the experience of normal spousal grief. I'm just making a point, I won't be using that awkward acronym.
Spousal grief is a subset of ours because we do everything they do on top of getting over what those years did to us and catching up with a world we dropped out of for years. In my opinion focusing on grief in the longer run as the sole condition is a mistake. This disease took them but it damaged and tainted many things. Far more things than I've ever seen listed.
Things are not the way they seemed in many instances in our memory because the disease was the puppeteer of the events - not us. I was furious at Dianne and I was threatening divorce because the unseen disease had his hand up her butt making her act oddly. I put that aside when I understood we had actual problems and I worked hard to help her understand I got what happened and everything was alright between us. It was afterwards when I was purposely dissecting Al Zheimer that I declared this whole topic invalid and the antics of you-know-who. It doesn't bother me what she did or I did because when those thoughts come up I become a Russian dancer leg kicking Al in the face. It was you...boot...it was you...boot...it was you...boot, boot, drop kick.
Just a little story, except that's precisely how the mind works. I'm not pretending to have no regrets. I went in there and killed everything, fumigated the place, swept the floor, put up a sign, and left a guard dog. I own this, it's invalid, end of story, end of power.
Wolf, I hope you'll forgive me for saying this but it strikes me that you're making a career of GRIEF. My advice would be to shut off your computer and stop your navel gazing. There's a wonderful world out there just waiting to be experienced if you'll only give it a chance, and philosophizing on this message board isn't going to get it. Just go somewhere, anywhere, and DO SOMETHING that involves real people -- make a start and then just follow wherever it leads and I think you'll be amazed at the result.
Tomorrow is the 2 year anniversary of Ron's passing. I love Gourdchipper's statement above. "Just go somewhere, anywhere, and DO SOMETHING that involves real people." That is my solution for everything. I think sometimes that it is escapism. Maybe I am running away from the real world, but I don't dwell on my grief. I have been on 4 cruises since Ron died. I think I could live on a cruise ship. The last one, June 13 to July 6,was probably the best ever. I flew to Amsterdam (by myself) and met up with a woman I met on a cruise last summer. We took a cruise that went up the coast of Norway and in and out of numerous fjords. Beautiful scenery. Waterfalls and mountains and best of all looking at the northernmost point of land in Europe at midnight in "the land of the midnight sun".
When I am home I can't even make myself do what needs to be done. I get the meals (DD lives with me), do the laundry and keep the lawn mowed. The rest of the yard work gets neglected, grass growing up through cracks in the patio and brick walk, weeds and junk trees as tall as I am growing in the beds. Floors get washed when I can't stand it any more. All I do is pay the bills and plan my next cruise. ( 15 days - Panama Canal from San Diego to Ft Lauderdale)
Cassie, Gourdchipper told me that I was being 'buttheaded' for the way I was dealing with my husband's death - and not letting it go.
His comments stung, but I believe he is sincerely trying to help. I have thought a lot about his comments to me. I know I have been 'buttheaded', and it has stressed me to see that administration (for me, meaning the Legal Department of this City) overrides my rights as his wife and Power of Attorney, and refused to let me know what actually happened to my husband.
Some of us can move on more easily than others. I am trying to do that, knowing that Rene would want it, but somehow I feel a responsibility to do what I can so others who are vulnerable are not victimized.
Wolf has contributed greatly to this website, and I hope he can see that Gourdchipper is trying to give him back his life, post Dianne. Sincerely meant, Wolf.
My memory told me that this battle had already been fought. Sure enough, Joan's handy search engine shows that almost a year ago, after a discussion on this very same subject, a rapprochement was reached, with both parties being most gracious. See "Journeys Somewhere Else" thread, August 14-16, 2015. So why has this sensitive matter come up again, seemingly out of the blue?
Yeah, in all honesty your post was mean and inappropriate, Gourdchipper. There is a way to say something, and a way not to say it. (Maybe you just got up on the wrong side of the bed or something.) We all seem to do a lot of navel-gazing and philosophizing on this forum, and 99.9% of the time find that it's perfectly safe to do so. Over the years there have been two or three on these boards who were able to get up, dust themselves off, and move on very quickly after the placement or death of their spouses. For most of us, it hasn't been that easy, and the whole process has required a lot of mental and emotional hard work...much of which gets documented here. Because it's OK.
Everybody gets out of the wrong side of the bed some days.
I would [agree] that by far most people have to do "a lot of mental and emotional hard work" and that while some people are able to dust themselves off and move on very quickly - that is a small minority.
I'll tell you something I believe Elizabeth. You're near the same phase as I am. We could call it the 'Builder Phase'.
That's where in the more neutral zone we're not chased by memories or deep grief or whatever emotional state we were pushed in to. We don't have truly meaningful answers either. All those bad things are still here and we can feel them most every day; but, they do not have that much power any more.
Instead we become strong enough or whole enough or healed enough or willing enough or more likely a combination of all those - to realize more and more steadily that answers lie within us. We are beginning to not just understand, but feel that truth on a daily basis.
I said that at some point we are faced with ourselves. That of course must mean our 'old' selves. We can't face our new selves yet. We're just beginning to build that.
I read Gourdchipper's comment yesterday and had a strong reaction. I knew you could speak for yourself Wolf and I am glad to read the discussion between you, myrtle, and Elizabeth. Well said.
I highly value people's processes and as pointed out here again we are all at different places. I have said for years I wouldn't have made it with this disease without this site. I am grateful Wolf and Elizabeth that even though your spouses died you are still active here. I read every word you both write and feel somehow like we are friends. Your contemplations and gift to the rest of us taking the time to share them here help me with my process. Hugely.
You are probably right marg78 that gourdchipper is trying to help. To me it reads as telling someone else "what they should do." I am not a fan of telling anyone what they "should" do. Rather we are our own experts and navigate as best we can.
Words typed out can easily be misconstrued. I am glad we can have an open discussion about this. And, I hope comments which appear to suggest that someone not continue here with her/his reflections - that those comments don't silence or shut down anyone. All of people's processes are my life-line as I too try to navigate my new role of widow.
As we all know, the 'builder phase' is unique to each and every one and is influenced by many different factors. Just as each person with AD is individual, so are those of us who care for, place and ultimately lose them. Now, at 14 months out, I think I'm doing OK about 75% of the time but am still finding it difficult to move forward and I still dread the lonely evenings and nights. To date, I haven't gone to a movie alone and am setting that goal this summer as well as going out alone for a bite to eat, not fast food, but actually going in to a restaurant, sitting at a table and ordering. These sound like small things but are huge for me.
Reading these comments, I was reminded of an incident years ago (before AD entered my world) when I had a list of people to call to invite to a bridal shower. One woman I reached said she didn't think she could make it as she had recently lost her husband. Thinking it was just weeks or possibly months ago, I asked her how long since he had passed away and she replied 'six years'. As I hung up the phone, I remember thinking, somewhat callously - 'Good Lord, woman, it's time to move on'!
Nbgirl*. You and I are about at the same place. I am doing okay like you say most of the time. Have not gone to a movie alone yet because have not seen one that I wanted to see. Have not done the dinner thing either. I did buy a new car, try to keep to a daily routine, exercise daily, and cook decent food for myself. Fortunately I am able to sleep well. I have joined a couple new groups at church and have become interested in birdwatching and am going on a Saturday morning bird watching hike in a couple weeks. Really do not talk to many of the Alz crowd. For me moving in means meeting and interacting with new people. I still have a lot of fears mostly about finances but I think in time they will go away. Still trying to figure out relationship changes in my family since he passed. I have a deep desire to live my own life once I figure out what it is and not live my life through my kids and grand kids.
CO2* - interesting that you mentioned birdwatching. I saw a hike advertised for songbirds at a local bird sanctuary a few weeks ago and I had great intentions to sign up but then something came up with one of the grandkids and I did not, but I will keep trying. I, too, got the Julia Cameron book from the library and did enjoy it, although I haven't actually tried doing the Morning Pages yet. This is where I seem to get bogged down - I have plans and think it would be nice to do them, but then get can't seem to follow through. Like you, I do want to get this thing called life going on my own terms and not be dependent on my family, and I would like to sell the family home and move to something smaller and more manageable for one - I do live in a very expensive real estate market and finding the right spot to buy seems to be eluding me currently. Meeting new people is an ongoing challenge - most of my girlfriends still have husbands and not the same flexibility that I do so I realize that making it happen is completely up to me, but knowing that and acting on it are two different things!
Nbgirl* I do hear you loud and clear. Regarding Julia Cameron, I would just suggest if 3 pages each morning seems overwhelming try one and work your way up. For me it was all about starting new habits and have read somewhere it takes 21 days to establish a new one. I went to a program at the library on birds and all you need are binoculars and a field guide so as hobbies go it is pretty inexpensive. As far as friends go, I primarily wanted some new people in my life in hopes that I could have someone to do things with. But I realize that I have to become more comfortable in doing things by myself. I know,people take trips alone but no way am I ready for that either. I guess we can pat ourselves on the back for having made it this far.
Thanks CO2* - sometimes when you are in a rut, it helps to know that a) you aren't crazy and b) others are facing similar challenges. Like growing older, this trying to re-invent yourself in your 60's is not for wimps! Regarding birding, I do have the binoculars and two field guides and am hoping perhaps a bit of genetic luck on my side.....I had an elderly uncle who passed away a few years ago at 91 - he was a birder all of his life. He lived in Tucson and for decades was an active volunteer with the Audubon Society, even still leading walks up until a few months before he died.
I like your suggestion of trying just one page of Morning Pages for now - in fact, I still had the book in the trunk of my car to return to the library today and so before I dropped it off I re-read that section. She does say these are private and for your eyes only; I think I would have to shred them immediately after writing!
I called that idea a 'builder phase' because I'm in a more neutral zone where the ups and downs aren't as strong. I might have a day that seems harder or one that seems easier but they don't have the power to knock me down anymore. Last year in 2015 (Dianne died in February) I spent far too many days trying to hang on or get through the day where I was truly scared by how hard it was to have any belief or hope that it would ever truly get better.
The builder phase idea is that I have to build what is in my life and in my world one specific at a time. Not everything, Some things become apparent again to me with the reduction of the intensity of my reactions and feelings. Also, as people around see I'm spinning off into space less, they change how they approach things with me.
The clarity of how much of what happens around me involves how I am in those things is stark to me these days. That truth I have only re-learned in the last month and a half. I had offers on various things for help but I couldn't hear them. It was only when I was talking to my sister and it came out how balled up I was in this one thing that I broke through. I hadn't seen her in five years even though we talked fairly regularly thanks to her. She offered to come here and drive me to this thing so that I could deal with it and I sobbed "are you really going to help me??"
That was the moment I wanted that help and accepted it and I told her clearly that I wanted her help. So we spent the day together almost two weeks ago and because of that I'm now in process solving that thing.
A couple of days ago another friend who's a retired lawyer came out here and went through a bunch of legal documents with me and also brought my passport application. I was kind of put out these last years that none of my friends thought it was worthwhile to come out here but the second I asked, he was here like a shot.
I'm not saying that people will come running the minute we ask. I'm saying that what I was certain of was wrong. How I thought about it was wrong. My ideas about what was going on were my own issues and not reality.
I'm busy these days and so at 8:30 in the morning I was at the passport office downtown applying for my passport which I don't need but will use to get another thing done. When I got home hours later, my neighbour called wanting to know if I wanted to come with him on a chore he had to get done down by Lake Erie and that we could stop at the Mohawk reserve and get some cheap smokes. I said yes.
As a result, we found out that the entire trip flew by because we never stopped talking. This is the first time I've spent any kind of time with him and we both agreed when we finally got back that that was a lot of fun. We stopped in a bakery I knew when I found out he had a sweet tooth and we got some chocolate cheese cake to die for.
He's not moving anywhere and neither am I and so my world has changed in a real way because I stepped out my door and am part of the village that was always around me. I'm not making too much of this. It's been in my mind that I may never make friends that feel good again in the way that I used to have. That's not true. What's true is that they're everywhere.
This neutral zone area seems to be like this. Realizing more fully the meaning that Dianne has long been gone. Seeing the world around me a little more clearly and navigating it a little more easily. But still not up in the saddle or free of parts of what all happened. I think that stuff tails off over many months. I'm glad that the power of all that is clearly ebbing.
What am I about? What is it I do? I already have all the meaning I need. I know exactly where I am in the most important meaning in my life right now. I'm not really healing so much anymore as getting used to my life. One simple example is laundry. I used to feel put out and irritated by it and now I just do it and I do it better than before. I've accepted it and so I own it. It's my laundry and I'll cry if I want to. (sorry, anyways)
The most important meaning in my life is helping myself get used to my life and I'm starting to see that the places where that happens always seem to share one similar characteristic. They're all things I allowed myself. I want to say that one more time. Every thing I like in my life is something I allowed myself to like and every one of those things had it's moment where it turned from being denied to me, to becoming a part of me.
I'm watching a young robin in the tree outside my window. He/she's unsure of himself but he flew away. In some ways he's allowing himself to learn in the face of some fear. Perhaps in some ways similar to allowing ourselves to let the grief go. Is it harder I wonder to accept the grief or to let go of it.
Good progress, Wolf. I read somewhere (I think it was on facebook or something) that often times we actually luxuriate in the grief and that it is actually easier to do that than take steps forward in our life. I am doing better myself, still have my days, but generally life is looking brighter each day. I still feel that the "new normal" is somewhat elusive, but the puzzle pieces are slowly coming together. God bless.
Hello, again everyone. Just been busy dealing with all the vicissitudes of house mousing and cat guardianship, and coping with the months of rehab from that Iceland accidents 5 years ago. After years of PT I found a PT who does deep tissue massage and after nearly 16 months have less back pain and can do more though I have to pace myself meaning make myself take breaks.. Every morning heat and at night ice. I still sleep in my " stress less recliner", since 28 August 2013! But I snooze well.
I'm still clearing hubby's closet. Everything is out, much sent to family members who can use what was new and never used, some things I want to keep, and the rest in large totes. I'd like to see about selecting some items to make into a comforted.. It has been difficult to let it go. If felt like I was pushing him out.
I read some of the comments about moving on in earlier posts. While it is true, the world won't come to us, we have to find ways to go meet it, I also embrace Wolf's observation that support is necessary.. One area of that support that is essential and makes the journey rockier is if family is either distant or absent. What is hard for me is worse than my in laws brim distant ( if we connect it is because I make the effort) is the stepdaughters. While they cause no demands or problems as some have experienced, it is the utter lack of communicatio save for a now and then chat. I mean months go by and if not for Facebook I'd never hear news of all the trips, coming and going etc..
Another thing I have discovered based on my experience of having lost my parents, recovery from that loss, while wholly unlike losing a spouse, is more easily facilitated because they go back to their own home where there is the support of their spouse and kids etc.. But we widowed, unless we have moved, come home to the same place with all the memories and the deafening silence of our home. Meowing cats don't count!!
Mimi*. Nice to hear from you. This whole thing certainly is a journey and not for the faint hearted. I am happy you found someone who can help with your pain. Hopefully it will continue to improve. As for me, I have pretty much cut off my husband's family. His only sister never called while he was ill and although she came to the funeral I have not heard a word since and I do not expect to. Also my own sister who lives only 10 minutes away never calls either. Before he passed it was always me making the effort and I decided to have a relationship,it takes 2 to tango and I am just not up for it anymore. I have found solace in my church friends and a couple other widows and divorced people. I agree with Wolf that one needs support but I believe some of the support has to come from within ourselves. I have rather come to the point where I like my quiet house but he was in placement so I had time to adjust to that. I have my children and grandchildren but they are all involved in their busy lives so I basically wait until I am invited and it seems to work out better that way. I guess all we can do is keep walking putting one foot in front of the other.
CO2, it's natural that one is the instigator in relationships. I looked at some of my former relationships (after some time) with an eye on what I wanted and what would be better for me. I decided to work at accepting the quirks of some of those around me because I wanted to keep those connections. In the case of your sister it would be an honest review of whether connecting to her when you want to (since you are the instigator here) and having that interaction would add more to your life. The upside would be that when it is you that feels like talking, then you allow that.
My sister had such an example without AD or death. She was the one who kept one of her relationships alive and when she started noticing that the other person never made any of the effort she stopped. She was angry and talked about it with me. I pointed out that it had always been this one way, so the fact that how she saw this had changed meant that it was my sister who had changed - not the friend. She argued because she had pent up anger and didn't re-establish that. She mentions sometimes how she would like more contact with friends but did not change her mind about that.
One of the hard things in all these changes is understanding clearly enough what we actually want more. I think it's just as valid to decide we don't want something anymore as it is to decide that we do.
thanks Wolf for your wisdom on these family relationships. I guess I have not decided if I want more from her. When we were talking before his death, there was not much of a relationship there. We are just so different. Our lives went in opposite directions--she never married or had kids--I had a big family lots of kids and buried my husband. I do not hold any grudges for I have learned that people do the best they can at the time. It was just so hard when I needed her the most when he was sick, she was not able to be there for me and that is okay. Blessings
In and amongst the five minutes I've had enjoying that I'm feeling better, I was propelled into the next problem. That's how everything is; which is the great lie. Everything we get done disappears milliseconds after it's completed and the next concern jumps out of the cake.
We walk around burdened by some thing we need to get done which hangs over us like a vulture forecasting our doom and then we get it done and the next day we never think about that thing again but the vulture doesn't need to leave because our minds are now on to the next thing we should really get done.
Which is why almost the same minute I stopped worrying about being able to recover and feel enough like myself, I started being concerned about living alone and how unhealthy that might be.
Think about that. I've spent many years surviving and a couple of years recovering from seriously hard experiences and even before my little boat ties up at the dock, I've changed the landscape.
The great lie is that people say they want to relax and be happy but most of the time they are the only person preventing that. I wanted to feel better when I didn't and I wanted to feel more like myself when I didn't, and when I became aware that I had most of that I stopped thinking those were the important things and moved on to concerns about what my life is now.
No cake. No cards. No toast. I have the things now that I struggled for and so my need to struggle just moves on to the next thing. Life's like that. Yes it is. Which makes most of the talk and most of the time we spend struggling with our problems a joke on ourselves.
When I get my license, I'm not going to think about that anymore. When I get my teeth fixed I'm not going to think about that anymore. My time spent getting back on my feet is exactly the same as my time spent getting my new furnace in. Once I get anything done I turn it into nothing.
You can't have it both ways without losing all credibility. Either the thing was seriously important or it wasn't - and the answer is always the same. It was seriously important when I didn't have it and when I did have it - it wasn't. Welcome to being a human being.
I live alone. So I looked it up. When I looked it up as a senior citizen everything talked about safety and health or that we're not actually old. The demographics show that more people are living alone than at any other time in history. They also show that more people are choosing to live alone than ever before. I'm not worried about those people. If they have what they want then they don't see what they have as a problem (which I explained above).
For me living alone is a topic because that's the concern du jour for me. When I come to some decisions I believe in about this, it won't be a concern for me anymore and I'll stop thinking about it. However, I will then move on to another concern and focus on that.
Like everyone else, I am my own joke. I prove endlessly that none of my concerns in life were anything but the thing in front of me. When they're behind me they transform into history. Whatever it is, only one thing actually matters. Is it in front of me or is it behind me?
Nobody's playing games. This is the fundamental truth of how we experience the issues in our lives as a human being.
Grief is one aspect of regret about what is behind us. It's universal that although we are meant to learn from our experiences, we almost all agree that if our reactions to our past dominate our behavior now that is probably not good. Experiences like ours have a lot of leeway where everybody with feelings tends to be understanding that it takes time to heal from very bad experiences.
My concerns have moved on from healing. I've still got baggage and junk but there isn't enough inside to believe healing is a sufficient concern. I'm in the same place but it's not the same world because healing is largely history but living alone is right in front of me.
Greetings, I am confused by a statement my youngest step daughter said today. We were on face time. She spoke about her mother's situation. She has ALZ. THEN out of the clear blue, with a gleeful look on her face she says" now tell me, isn't fun to have the whole house all to yourself, to whatever you want ! how great is a that?" What kind of crass and thoughtless revolting question is that? And just 2 days past the 3rd anniversary of the day I buried my husband, her dad??? I said no and evenings are the worst time of the day! No one to share the day's events with, dinner alone every night unless you have a plan for the evening with friends etc. what does that say about her? I'm disgusted by this. How shallow can a person be?
Wow. That IS pretty crass. It sounds like she does not have a clue about what you are going through. I'm also wondering if she is craving private time in her own house so much that she is blind to the reality that you are living out every day.
I mentioned this to another friend who lost her husband five years ago. She was aghast at that comment. And in a conversation with another friend about this individual on a different topic related to her so my friend said that from her posts on Facebook she can tell that this lady of 50 something is all about her self. She's married and has kids and is pursuing her dream and has no worries in the world. Her husband takes care of all the big bills and all the major issues related to paying bills insurance so forth and so on. She can just go on skipping along do your thing and is so self-centered and self absorbed that it's astonishing. It makes me wonder if something happened to her husband if she would actually be happy about it.? Maybe she would be feeling free to come and go and do what she pleases. Maybe this is more about her life and her marriage and anyone might know.
She sure will. Family dynamics certainly can be strange. The other day I fell while taking a photo. Not sure why. No warning but I think the edge of the heel of my shoe caught on a bush or something. I ended up flat on my back in a flash. I hit the back of my head on the pavers. I did not lose consciousness nor see stars of have vision or other issues. But I did a number on my ankle and knee. My neighbor got me to hospital where I got checked out. The hospital wanted someone to wake me every 2 hours. Well I'm like most of you. All on my own. My neighbor called every two hours and I texted a cousin 2 hrs ahead of me to call and DSD to call. They did. I didn't tell the other TWO but they heard about it and were full of questions. A week has gone by. Not a text or email to see how mail to see how things are going. If they were miliniols .. but they aren't. They are just as self centered as many of them are. Goes to show, even if the step kids don't give problems over belongings etc, they can be difficult in other ways. Time for distance. My DH used to say you can always count on the girls. How shocked he would be.
I was sorry to read about your fall and the lack of follow-up concern by your stepchildren. Trust that the ankle and knee are healing. I had to look up the word "miliniols". Tom Bump wrote in "The Atlantic", March25/14, "The experts say the media get to determine when generations happen, and we're the media. We also get to say which generations are the worst, and the Millennials are the worst. But you already knew that." He said he thought that the generations leading up to the Baby Boomers were the best. Sure wish a few of our wiser minds could offer some ideas of why this is so and how to deal with it. Wolf?
It's quackery. The best generations were in the 1880's because you could get 14 hours of work a day out of them AND they took in their parents when they got old while raising whoever survived out of eight children. Children dying was common. Subsequent generations made the reasons rare.
I found that article and notice that the Millennials start in 1982 which is ridiculous where GenX doesn't end until 1984 and Tom's 'best generations' are all people before the boomers one supposes because their alternative was the near starvation on the farms which was the lot of the 1930's otherwise known as The Great Depression.
I can find no shortage of articles from Sumer, Greece, Egypt, Rome, China, Japan, Europe, and north america that all rail on about the younger generations going to the dogs and destroying civilization and they all read the same and are all written by the same group - the old of that day.
Raising your children is never done my friends agreed at the party. That's what your own parents believed too I pointed out, and our childrens' reaction is exactly the same as ours was on that idea. Boy did they turn on me.
I have one foot in both camps. Do not go gently into that good night and my only fear would be if the young of the day actually listened to anyone. They don't, thank God. Neither did we and neither did our parents.
It reminds me of a day maybe fifteen years ago when we were at a cottage with our then lifelong friends and their older teenagers. One fellow said something derogatory about people of color and all four of the 'children' let him have it with both barrels and would not be denied that such behaviour was completely unacceptable. This next 'generation' has no tolerance for such behavior about gay people and as a result my dear nephew can come out and invite his uncle to his engagement to the one he loves. One of my friends in that group grinds his teeth in silence but dares not speak up. Good. Shut up about your hate.
The actual millenials are going to start coming out of their teenage years starting in a few years and then they will start making their own changes. My sister loves talking about her nine grandchildren where even the six year old can make a little movie, put it to music, and send it to her friends where she can start on the Ipad, switch to the desktop, and switch to the IPhone and knows how they all work and how they all interact.
I just hung up from wishing my sister a happy 67th birthday. That's the first time I called her on her birthday in many years. As we talked she said how great it was to hear me so grounded. I sang happy birthday to her which is the second time this month I've done that to someone. Nothing is left to stop me from being me that's worth talking about and I know that because I know this person like the back of my hand and I could do cartwheels on the lawn about seeing that, whatever is ahead of me, that movie is all mine and it stars the same schmuck who schlepped me all the way from that stupid boat when I was three puking my guts out over my parent's great ideas, to this moment where I own everything, am free to do what I want, and don't feel unduly encumbered by all that came before.
I love Dianne even though she was a half miler and I always will. I would never have learned as much about painting and writing as I am now and I would never have learned this much about myself and I would never have become the set of things I believe in, if all of my life hadn't taught me to always find my own path. I liked it as a partnership much better but I got all the Dianne time that was available and I don't really care anymore what crap she did when she transformed into that state. It was ten years of the almost fifty we had and on balance I was and am still satisfied with the choices I've made so far.
Nothing good in my life has ever come out of dwelling on my past and what did or didn't happen. Damage from those years and grief were real and they were happening recently, not five or ten years ago, but months ago. Now I see it all as old junk that sucks up my precious time for no meaningful reason anymore. Dianne doesn't want that. I don't want that. And now that I don't need to anymore, I'm not. It turns out I'm as lucky in life as I was in marriage for exactly the same reason.
Whatever generation is at the wheel these days my advice would be the same. Don't listen to anybody. I don't need to give that advice because that part runs like a Swiss watch. Make that an IPhone.
Just jumping on here for a moment to memorialize the two-year anniversary of Larry's death. I am really not comfortable posting anymore, as you all know, because for months and months my eldest daughter was in essence "reading my diary" without me knowing it and after she had been asked not to, and said she would not. Inappropriate and creepy, from someone I thought was a great friend as well as a relative. But never mind that, that's not why I'm posting. And thinking of the comments on internet privacy, I never had or have the slightest problem with all of you, or anybody new on these forums, reading about my Alzheimers journey in full, gory detail. It is the breach of my privacy by a family member that has pushed me off this site.
I had, frankly, intended to say my goodbyes today anyway. It's been two years, and while Larry will always be with me in the happiness of my heart and in the blessings he brought into my life...in the sunlight and the wind...everywhere...it is time to move on and build the good life he would have wanted me to have. I think Coco posted something like that somewhere recently. (I can't find the post.) It can't be all Alzheimers all the time. I've been working hard on Julia Cameron's book "It's Never Too Late To Begin Again"...doing it one week at a time and really giving it some time and thought. It has been very helpful, although I can't really keep up with all the tasks and exercises she assigns. I am on week nine of the twelve weeks, and it is helping me focus in on what I want to be and how I want to live for the rest of my life. When I'm done with Cameron's book, I'm going to do another twelve week journey with Christine Valters Painter...her book is called "The Artist's Rule", "nurturing your creative soul with monastic wisdom". This book supposedly " invites readers to discover and develop their creative gifts in a spirit of prayer and reflection...draws on the insights and practices of Benedictine spirituality to explore the interplay between contemplation and creativity." Sounds kind of "heavy" for me, but I'm interested in trying it.
I've seriously researched going back to NY at this time, and I'm still going to be in the Heartland for the foreseeable future--I would miss my green spaces too much, and it is so good for the dog here. And quite frankly, the grand children need me.I am starting to build my "tribe" here with wise and wonderful neighbors who have become friends. Family issues loom large, but the family is moving away, so my involvement will be much less as I still function as "Grandma", but spend much, much more time on my own life and interests in my little woodsy cottage. I'll be going to NY three to four times a year, and will be watching closely two neighborhoods up there where I am very interested in living eventually...but for now, I very much have a foot in both places, and intend to enjoy the best that both NY and the Heartland have to offer. So hugs to all my forum friends, and thank you all for saving my life. I will check in now and then--will certainly come to our virtual, online "Christmas Lodge" if Wolf opens it for us again this year. I love you guys.
I will miss you, elizabeth. Your wisdom and resolve have helped me immensely and I enjoyed your stories of writing and walking and having a puppy. . . and how you began to put your life back together. I am not there yet, but when I am, I thank you for being a good role model. Every time I look up in the sky for the ISS I will think of you and all of the possibilities of life - something that we survivors have to relearn.
While I totally understand your desire to move on, it makes my heart ache a little bit. I always loved to log on and see that you had written something. So often that something resonated with me. Godspeed, friend of the cloud.
It makes .my heart ache, too. In the 2 years I've been on this site, I've seen several people sign off and read the sad goodbyes of those who were left behind. But I did not know those people well and had not travelled with them for long. This is different, though. You have shared so much of yourself that it feels like I am losing a friend. I guess that is the nature of this site, though. No one wants to live in dementia land forever. I hope you find a new life with much happiness.
From the moment I signed on, you were there, Elizabeth, encouraging and supporting. Thank you. Best wishes as you start new adventures away from AD. God bless.
elizabeth*, I haven't followed anyone in about a year, but you always stood out to me. I understand completely the need to move on. The 25th marks Lynn's one year Angel-versary, It's all different now, I am different. Lost really, but fighting to find out who this new me is. What her wants and dreams may be.... it is exciting and frightening at the same time. Ridiculous is my new favorite word.
I am hoping that Joan's new widow blog will be an outlet for me as I work my way through the afterloss. I too am trying to find my tribe, funny how that comes up a lot in my reading on grief. You have always been so kind and I too enjoyed reading your stories and progress. I have many of the friends I made here as friends on my facebook, it has helped us keep in touch without feeling a need to come here when the pain was too great. Because you are right, it cannot be all Alzheimer's all the time. We served our time in hell.... we did though, leave a legacy for those who come to this site for guidance and help. A simple search will bring a wealth of knowledge. I guess that is why I never felt guilty for leaving when I had to save myself. I can't go back in the trenches....
This thread, I don't know.. it has never felt like "home" to me. When I was still in the caregiving role, this thread was the heartache that I could not bear. Just trying to read the heartache up here destroyed me. It was a reminder that I too would one day be here.... and now I am. Yet still, it does not feel like "home". I have never been able to read through these posts. While I'm struggling in this new ridiculous world, maybe I should read through these threads for pearls of wisdom and beacons of hope. (Thank you too for the advice on the books, I will go have a look at them.)
You're going to make it I believe and that's true I think whatever you decide. But it's a better road and one you deserve if you can take in how many people want you to be here for you and for themselves.
There comes a time in the tides of women when the ring comes by which if grasped leads on to other things. Or something like that; and I believe, Elizabeth, that this may be one of those tides in your life where the old world and the new world are sundering in any regard, and it's not much of a reach to moderate a little where you have a lot of what you want here and leave out some things you might otherwise share. Forget the rear view mirror because it's in front of you and here now and you should take it. I'm sure of that.
What I'm sure of is that this choice is a better life for you, a fuller life for you, and an earned sense of not being so alone. "I love you guys" you said. Well I don't need a decoding ring. Push some baggage off the train to make room for you to be right now because you've probably noticed that none of the things from the past are driving however they appear. You are the only person driving in your life and we are virtually your family. You should come back.
Well I totally support your decision Elizabeth I got teary reading your good bye. Tears still streaming as I type this.
Like so many others have written, I SO welcomed your words and being able to travel along with you in your process. You have helped me immensely and I will miss you. Very grateful you will join us again for Christmas, like you say if Wolf opens the lodge (please that he does).
I made note of the books you are working through and am going to purchase them. Sincerely all the very best to you and thank you for all you have given me. Love you too. (((hugs)))