If you want a life down the road you're going to have to authorize it and right now what you need to authorize is chicken soup for the soul - and nothing else (see above). The first months at least should be all defence and all a defensive mentality to get through those months.
Floundering. The act of flailing. That is why many people drown. They panic is the common term but what they're really doing is trying to climb out of the water. It doesn't work. What works is calming down where deliberate small motions keep almost everyone afloat.
Learning to get small. When input easily upsets then control input. I've heard of people being upset going into the living room and people living in their bedrooms and people not getting out of bed, or dressed. TV and newspapers tend to focus on conflict and tension. Sitcoms and travel magazines not so much. Watching romance may sting.
There are safe things and safe places and your job is to look for them so you can find them. You are likely literally building up a new purpose and new reality in life. Every thing you find that you are at least fine with or willing with is part of the new reality that you can accept or believe in. Every change you make is part of that too. Just putting the soap dish on the other side of the sink. Eating when you want to. Eating more of what you like.
Forget feeling good. It will happen in moments. It's unlikely to be the dominant feeling in the first year at least. Instead try to keep the memory of how you really were before they passed and how you really were shortly afterwards. It's difficult to keep accurate perspective of those things but the notes that I kept proved to me that I always underestimate how badly off I was because that's a drag on feeling better now - yet that is where the evidence was that I was improving quite a bit even though it never really felt like it.
Look for fun. Right now that is a joke. When that thought stops being a joke - start trying to look around more. Now you might be entertainable if not yet involvable.
Finally, don't accept how you feel now as you. Just as the victim getting kicked in the alley shouldn't believe this is their lot in life now. This is going to pass. Personally, I think wanting it to pass as a cornerstone helped make that so. I can't prove that.
All of this is geared to people starting out. Most people adapt within three years is what I get in a very unscientific way. This is the end of the brief overview. Good luck.
Wolf, this has the makings of a very good book. It could be the core of the book, fleshed out where appropriate, but essentially a guide to recovery. Doesn't have to be too long. You've already got the concept, chicken soup for the soul in recovery. Think about it. It would be very helpful in many other situations that people have to face: breakup of a relationship, loss of a job, death of a child. Life has a way of throwing us a curve ball, and practical measures of coping are needed. You probably need a different title than "Chicken Soup for the Soul." That's already been done.
Thank you sincerely. I have read this several times and it is incredibly helpful. I am just over two months since my husband's death and have really been pushing myself. Inside a voice keeps saying, "Rest." After reading your words, I am going to give myself permission to rest. That I can give myself a whole year is a gift like no other.
"That I can give myself a whole year is a gift like no other." I'm glad Katherine, but you're going to be up to your neck trying to hang on to that thought - I know that two months afterwards I was on a roller coaster of epic roller coasterlinness. For several months I was a pair of eyes staring out above a pile of comforters. Blankets, I mean, we were fresh out of the humankind. I wouldn't know what I said more often but I know I've said both of these hundreds of time - "take it easy" or "relax and breathe".
You could pile up a thousand Job's and they wouldn't come near to the patience I've had with myself. I'm riding one such bronco right now. Wolf is the bull having fits trying to get away and know-it-all voice is riding me announcing into the megaphone "get your driver's license, it's not this hard!". Ahhhhhhh! Get away from me! I screech dancing and waving like I was surrounded by a nest of bees. "I gave already!" I scream at myself. It's like a bad movie sometimes.
Give yourself this year with the goal of just trying to settle down a little as the months pass. Get some input. TV and the internet can be selectively used if we're not ready for the human kind of input. Get some air and walk around a bit and try and make a list of things that seem like a treat. At the bottom of that list the last line should read "start again at the top". I'm glad what I said seemed to help. Thank you for testing the product.
I always complain there is never a brochure. Well, now there is. And if there was a time loop right here and I arrived here later instead of earlier, I might be looking around saying "oh look, there's a brochure".
So while I'm dancing around saying "oh look, my leg healed instead of falling off" and even though one of the three young girls on the swing tube in my painting looks exactly like Data on Star Trek (not good), I can live with my widowerederd and wizened life on a stick right now as long as meatloaf isn't the only thing on the menu forever. That makes me think of Tim Curry in nylons and outrageous makeup saying "come up to the lab and see what's on the slab". Rocky Horror Picture Show. Another fond memory sitting in the Roxy Theatre on Friday nights in downtown Toronto with our newspapers and stuff all saying the lines out loud together "we'll just say where we are and go back to the car!" My life used to be exactly like a movie where I was in it. Those were good days.
I have no idea what's down this road. I'll let you know. Thanks for the comments.
Katherineecs*. Yes do rest. I concur with allowing yourself a year to recover. It is 13 months for me and I am just now starting to do something socially with new people I have met since he passed. The first 3 months I was numb and in a daze. The second 3 months was not much better. I experienced intense irrational fears, guilt, sadness, despair just to name a few. At about 8 months the deep,sadness started to lift for maybe a day or so but then would return. Everyone is different but my experience may serve to help you a little. Unlike some I have made decisions in the first year like getting a car and taking a vacation. But everyone is different. Do only the things that make you feel good. I did attend 2 bearevement groups the first year, one with hospice and one through my church. They helped immensely as there were other women who had lost their spouses. When you are with people who have gone through it, it helps a lot because these people get it and I felt more comfortable sharing things that I could not say to my kids.
It's not for the faint of heart. That's very true as I found out yesterday.
I got up and felt very alone which isn't unusual except it was quite strong and I phoned my sister. She's the one I can talk to about real things the most and I asked permission to talk to her which is unusual because we talk about every two weeks or so and lately I've been phoning people more. She said it was fine go ahead and talk - and it all came pouring out like a bag of sand in my hand that split open and spilled out.
Yesterday was the first time my sister heard her brother crying and sobbing in her adult life. I had no idea when I called because I was sure I didn't know anybody anymore that would hang in there with me. My hopes from anybody are near zero. Not in a bad way - just in real life proven these last ten years over and over again. Even my sister took a long time being willing to hear about Alzheimer's. But she went 15 rounds with me yesterday and was in there with me the whole time.
There wasn't anything new or surprising in what came out. It was new and surprising that it came out talking to anyone. I know I've got lots still repressed but like the person with a limp who's trying to get to higher ground - it's not the limp leg that's important because getting to higher ground is what's important. More stable, less turmoil, further away from the mountain of bad things and closer to a relationship with my reality now are all part of higher ground.
Yesterday, without realizing it, instead of going down into a trough yet again alone, I reached out to the one person that might help me and asked, without realizing it, if I could let it out. Today I know more clearly that I'm not as alone as I believe and I actually am more connected in more real ways than I also believed.
People afterwards are more willing than during generally. They didn't become saints suddenly and are who they are - but Alzheimer's really is a mountain of an obstacle and the disease isn't the problem - it's the cause not the topic. I refer to it as "what happened" but the disease didn't come up in yesterday's conversation. It was about how I feel - and how we feel is the true issue because that is the only thing between us and sufficient peace with "what happened".
I seem to keep going back and forth from enjoying my life alone with the dog, to feeling kind of lost and "out there" without anybody in my "A" group, or "tribe" or "immediate family" or whatever it could be called. It is an odd kind of isolation and loneliness, hard to describe without sounding whiny. I think I just miss being married. It is a feeling of vulnerability, of being too exposed to the dangers of life, of feeling like there is just nobody to love me and care for me the way Larry did--nobody to guard my back--and silly little things...nobody to fix the broken doorknob while I put supper on the table, nobody to give a hug and kiss to while going in or out, nobody to talk to unreservedly about money issues, house maintenance...just family gossip...things like that. The dog is good company, and makes a huge difference for the better in my daily life. I "get" why they say a dog is man's best friend. But there is still that odd sense of floating free in the cosmos without a space suit on.
I think that missing being married is different from missing having others in your "tribe." Some people who lose their spouses still have people around them who really care for them, are loyal to them, and will sacrifice for them. Those people, who are not necessarily blood relations, are part of the surviving spouse's "tribe" or "immediate family." But others who have lost their spouses do not have such people around them.
Yes, I was having trouble explaining it. I just came back on to say it's the feeling that you simply don't come first with anybody. That's what I meant.
Now that you explain it, I can see that in addition to the grief of losing your spouse or partner, you must experience the loss of coming first with someone. But if you have a "tribe" (which I think is a good way of putting it), you still have people who are loyal to you, care for you, and will sacrifice for you. That's worth a lot.
I do have a "tribe." But it's in NY. That's one reason among many that I'm keeping a foot in both places--and working on my tribe here in the Heartland. A neighbor brought over some fresh lettuce and herbs from her garden. I've been making salad out of it for two days. I had given her a box of good tea when I ordered from Amazon, not realizing I was going to get five boxes. lol And I chatted with another neighbor in the road for a few minutes, when I was out with the dog headed for the park. Hey, one step at a time. But I do think most of my postings about myself are going to be on Journeys Somewhere Else, not W/W. Sometimes though, it just seems like the issue is a W/W issue. The lack of someone to watch my back is surely a W/W concern, and having to protect myself from family members as a W/W is another subject where I can't possibly be the only one.
Wolf, I think it's great that you were able to spill your guts to your sister and that she was with you the whole time. Sometimes people are made of tougher stuff than we realize.
Myrtle, I agree. It was also great that I was able to spill my guts to anyone at all after many years of living the repeated lesson that I do not matter. I can make a case for looking at long term caregiving of my Alzheimer's spouse strictly as the process of the disenfranchisement of myself.
The hole in our life which is the absence of our life partner is in a league of it's own. That level of grief is a universal in all cultures and all history. It rips your concept of life to shreds when you lose that no matter where or when you are. No disease has to be involved in that universal truth.
But you do need Alzheimer's disease to explain that when she passed, I had seven years of increasing repression of myself. I had long given up thinking in terms of me and life in any normal or healthy way and instead spent those years learning not to think in that painful and unapplicable way. My own experience that any lifelong family or friend could turn on me at any time with no recourse or hearing reinforced that in the real world.
I phoned my sister back the next morning and we talked for another two hours. I told her I didn't want to leave it at that and she told me she was about to call me. My sister had never heard me cry at all and we had never called each other the next day to continue what we were talking about.
There is a parallel in our lives. She is transitioning to retirement where her husband will be home all day (AHHHH!) and she is discovering that she is becoming the old lady talking to old children (48/47/41) about how they are raising her grandchildren. She's learning that she's not just 'Gammy' anymore, the grandchildren have their own lives and friends, and even that the fact that she pushes her point on any topic is actually just annoying.
In real ways, she is realizing her core meaning is gone (which is to mother) and it's not coming back while she has no idea what to do with the husband that is coming home to stay.
Well, hello, my core meaning is gone so I get your drift there sister. But I phoned the next day too because I could and I wanted to. My sister and I can really talk just as I do here and we had a great talk about all of that and when I hung up I knew I had just authorized myself to reach out again and not just flesh it all out, but more to prove to myself that this connection really is there.
Yesterday I was walking across the street to motorcycle man's house because he had bought cheap aboriginal cigarettes and did I want a carton for $20 and not the usual $104? Sure, I can walk across the street for $84. As I walked down my drive, my next door neighbours were both outside. They started talking and I walked over AND I SAT DOWN AND ENGAGED with them. We chatted about the shed he's building, and her artwork, and what I've been through.
While I was sitting there I could feel the sun and hear the birds and the chatter and I realized I was reacting negatively to how normal this all felt. It felt good but it felt bad. Instead of just feeling that though I could see it and I chose to push that away and stay longer and chatter.
Languidly later, I went across the street and rang motorcycle man's bell. He has two dogs and a talking parrot. I usually just chat a few minutes but when he talked about converting an antique bicycle to a motorized bike I asked about it and I spent an hour in his garage where he showed me and we talked about all kinds of mechanics. "You're a squarehead. You get this stuff." he commented when he went through the stroke and displacement of the cylinder heads. I didn't and I'm not German but I am having a pretty good time so what the heck. Besides, I'm making $84 an hour here.
The thing is even there, I was able to not listen to my old self and again push away the thoughts of going and instead ask questions and engage in what he was building. He's worked in other countries as a specialized toolmaker and has been in a motorcycle gang. He's minding the parrot of a friend in prison. The man is interesting in ways Mr. I-Love-Fire-Engines never will be.
I'm not just here to gab. I want to learn. I need to learn how to be me here now. That doesn't mean go out and do things as I've always said. It means learn to enjoy doing things. That's what I want and need and what I don't need are any other reasons.
I should do that lots more is the usual response but that is wrong. Chasing good times is a fool's errand. You don't pursue feeling good. You bask in it. You don't seek it - you allow it. My task is not to do things. It is to enjoy things in a normal way. That's generally neutral with some good and some bad things happening where normally neither the good nor the bad are of real consequence compared to....what I became over those ten years.
I would say that until this summer, the second summer after Dianne died, I would have had no real chance at this. I've enjoyed myself at social gatherings both when she was in the NH and last year after she passed. But then I went back into my gloom. They were not the real thing Wolf lived feeling - the gloom was.
Yesterday, I strolled back into my house and I felt better and with real continuity in my feelings and thoughts about everything. It's been some months now since I've done what I did for many years which was fight the issues in my own way. There aren't any issues. I need a driver's license. I want more life in my life.
I also need to keep my issues in mind because I'm quick to frustrate and my growing bubble of life is fragile and limited. It can easily be shattered but I am a vigilant parent. My new life is at best an adolescent and I would say a crawling toddler.
If I were to write a book as suggested, I would weave a number of narratives into the story. One of those would be the evolution of the sense of humour I was displaying. Another would be the chapter titles which would be quotes from my worst days chronologically and dated. The real arc though would be the evolution of the facts of things described by how I was seeing them.
If I did a half-assed job, you would understand deeply that healing from something big is a process of transition of the self. That involves seven of the senses the mind uses. Humans I think will incorporate this somewhere down the road when talking about our senses. There are five external inputs. But they are recorded thoroughly into the mind bound up with feelings and thoughts. Specifically, your feelings and thoughts. That is why reality is personal and never agreed upon in any detail.
Raise the topic of Hillary Clinton's clinch of the nomination to a republican and a democrat and I guarantee you that those are completely different 'facts'. Reality is personal. It's wired in the machine.
Yesterday afternoon I got needed supplies. When I pulled up into our court, my neighbour was out as usual. I stopped and rolled the window down and announced, "This is not me in a car you're seeing. It's just your imagination." He laughed. This is the only trip I make. I didn't get pulled over and didn't get hit by a meteor. Instead I appreciated that I got away with it and that I lived on this lush court and that my flowers were in and the lawn was cut and the hedge was trimmed. I unloaded the ton of groceries and I tried making curry chicken burgers. Not great. But I've got a life I'm moving into and I appreciate that. I even enjoy it sometimes. The reaction I had sitting next door chatting earlier was that it was wrong. It wasn't wrong. It reminded me deeply of how things used to be and that hurts. But it's reminding me of all that because I'm feeling that relaxed enjoyment of the moment in my life again; and that it's this life that is real because it was then with her and it is now again with me.
Wolf I really liked what you said about good feelings are not something you seek but rather bask in them when they come. How true that is! I spent the afternoon with my sons and grandchildren and had some good feelings. I got there early and was able to have a really nice talk with my middle son. We talked about our grief and how hard it was for him after he passed. He told me the last time he was with him and he was still cogent he told him what Alz was like. It was like he goes to,say something and his entire mind goes black and he cannot recall anything. I told him about his last Christmas when I knew I could not take him out for the holidays and how very sad that was for me. I am happy you have a good relationship with your sister. Since my husband's death my siblings and I are further apart. We never were real close but now we never talk. I was always the one making the effort to call and I decided it takes 2 so I have stopped calling. My siblings are a lot younger than me and 2 of them never married so had very different lives. I have decided I am just making my own new friends and moving on. I also had a thought last week that really surprised me. I like where I live and certainly had no thoughts of moving but the thought actually came to me that yes maybe I will move at some point---not now but at least there is the possibility. Like you Elizabeth I am trying to get out from under the curse of Alzheimer's. It truly does one heck of a number on ones psyche on so many levels. I am just trying to be grateful to be here and have survived the whole dreaded thing. As I reflect background on the last 13 months I have made good progress but certainly not back to a new normal. We are all just walking each other home.
CO2, my sister and I have mutual willingness. That's why it's working. We weren't close either but when mom passed my sister started phoning periodically and after a few years of her normal artificial tone she finally took on that we had AD, after Dianne was in the nursing home.
My best friend phoned in a drive-by shooting yesterday with that same artificial tone my sister had. He likes things spontaneous which means he knew yesterday or last week but the other party doesn't get to know until just before - because that's spontaneous. Did I want to meet for a bite and chat at the freeway where he was coming up to my city? I reminded him I don't drive right now which we've talked about several times but just like my sister - remembering something that doesn't work for him isn't good for him. With all the sincerity of a telemarketer he said too bad another time. I'm 10 minutes from that freeway but that's not what he had in mind, so....
Pure and simple my sister needs family and is working to meet me half way, I need family and I'm working to meet my sister half way, my friend needs his working comfort zone to survive and he controls that closely. I'm angry because he's my one shot at a real friend in my life and I transfer my needs onto him. Well, I don't, it's just that every time I look I've put my needs back onto him (no other semi-viable candidates).
Some things are clear as a bell. One of those is that while AD was happening, I lost the where with all to invite and host and join both in logistical ability and in spirit. Well before Dianne passed I had transferred all responsibility for all connection to them at the same time that they were mutually pulling away from the visible effects of AD on what used to be Dianne and used to be us.
It's so easy to say and so hard to do. To realize that it's a decade later when I am 'coming out' gradually and it's not only my life that has changed - it's me, it's everyone I knew, and it's the times themselves. The big one there is that I have changed. I don't know how yet because I'm still entangled with both grief for Dianne and the peculiarities I have inherited from that long experience.
As I speak, the majority of my crowd is turning 65. As I type I'm mentally making a note to phone my other friend on his birthday when he turns 65. It's the same day as Dianne's birthday was so it will be easy to remember. It's snippets like that which let me peek into the underlying truth of all these things. I'm myself enough to want to do that and care that he gets my congratulations that morning even while I'm posting about how distant they all feel.
If I was in therapy, I would expect the analyst to form periodic useful feedback once in a while. "We're getting somewhere I think. I don't think we're getting anywhere." I provide that service to myself for free. I'm fabulous and I want to have sex with me. Ok, maybe something more tempered - like that I sincerely try to be objective about this and I can't see anything getting worse; instead, I see more than sufficient examples that I'm getting more relaxed and capable gradually and am feeling more like myself.
At about the pace which glaciers recede. That part is unfortunate when you're twisting around wanting it all to have ended yesterday. That's not fair. I'm so much better today than I was 17 months ago. Unfortunately, my worst things getting better don't make me joyous or want to dance. It's priceless to know that anxiety and depression aren't the only prisms I see through anymore. It's priceless to have things go horribly wrong and watch myself NOT come apart and not have bad reactions later.
In my strong and unprofessional opinion, it's precisely learning to bask in the good things I have which is the road for me - not pursuing them and not doing them. I've watched that neverending steeple chase lots of times. I'm not playing because it's fruitless. For me.
My reality is that I'm lost in my life because I don't have one with core meaning yet. Instead I'm coming around to investing more in the people around me by allowing myself to live the reality that I want that. My neighbours are still just my neighbours and they aren't inviting me to move in. Instead I get up and continue another day in a world where literally every part of me that matters is gradually getting used to it and gradually accepting it day by day.
I'm a million miles better off. I used to come apart just looking at the horribly unwanted future when I still had Dianne with me and that didn't get much better when she was in the home. I just got a little better at being alone. I've been living this life for over four years but I'm just starting to become what feels like myself in it.
It's the fact that I know I'm being a goof about my license just as I know I'll be getting that solved, but that nothing about it is relevant. It's a marker I'll be passing by that will become as irrelevant as getting my health card was or some other event.
I'm a bundled up ball of energy in an old man's body where my skin is clearly getting more tired than I am. I want to talk. I want to engage with stuff. I want to do something fun. I'll happily take just ok experiences in any of those.
And in all these comments that's the paragraph that says it all. My garden is growing now that I've neutered the gargoyles and stand ready to neuter more of them. I will be retiring the 'fight' analogies because I don't think there are any more. Instead I understand this is a different part of my life from any I've lived before. The 'it to me' era is over. This is 'me to it' where I'm never going to care about my license story five years from now - but I can guarantee you I will be living in the garden I grew. Everybody does.
I'm going to be affected by Dianne for many years to come in many different ways. I'm certain grief has a long but receding tail. I'm even more certain that Krause's don't last and I have a few years to bop around in. My fear left me in that valley of death. I've spent my whole life feeling fear in one way or another. It's still here but has shrunk a lot. Dianne got killed sending our lives into a quagmire of pain and that changed things inside me both good and bad.
I'm over Alzheimer's. I'm long passed it's peak which is where I went 'over' and it has shrunk a great deal in it's power and has some unknowns left like bad memories that suddenly jump out. It's gone except in the remnants left in me and that's something I should celebrate. I want everyone to get over AD, but I'm honestly mostly interested in Wolf getting over it.
I don't allow myself to dwell on Dianne wheelchair lady or Dianne the village idiot. I went through those things to change how I saw things about AD, but I always said "not this Dianne". She will come in time to be her real self in my memories. I have promised this to myself. Here I 'fight' with just one weapon and it is love. The real love we really were.
That was a great image walking each other home. I can get behind that phrase to describe the philosophy. On we go.
Wolf, it is good that you and your sister have connected. I hope that happens with my sister and me after my mother passes but I am not going to hold my breath. I went to Bible Study tonight which is another new activity for me. Slowly but surely I am coming out of my self-imposed isolation and joining a few new things. I want so much to get past the Alzheimer's mentally. The whole thing almost consumed me as I think it does most caregivers so it takes a while to climb out of the deep dark pit to where there is actually sunlight. God bless.
Yes, I remember Larry as his real self, not the Alzheimer's self toward the end. His nice portrait is on one dresser, and the American flag from the funeral is in its case on the other dresser. And I wear my rings. He is never far from my thoughts.
I continue to feel in a fog and don't have words this morning to offer. Please just know I follow this thread daily and am gaining strength with knowing in time this incredible pain and lethargy will lift. Thank you to all who continue to post.
Katherine, just keep putting one foot in front of the other--or just sit down and vegetate in the fog. One day at a time...one day at a time. And you know what? That fog is going to gradually lift when the time comes, just like the morning mist rises over the grass in the morning and evaporates into a sunny, new day.
Elizabeth, your daughter with the children objects to the trust fund you set up for the daughter with the handicap. She says her sister already receives handicap benefits from the government. I can’t see that as being any guarantee that her sister will continue to receive them throughout her life. I don’t know of any government that can promise that. Things change. Sometimes the economy can’t support all present programs. The best security your handicapped daughter has is in the trust fund you have established for her.
I, also, bit my tongue when I first read your entry. But since I let it simmer for a few days and knew that I was not just overreacting, I had to let you know I support your wise decision to set up a trust fund for the handicapped daughter. I'm the last authority on earth on daughters — I don't seem to have done a good job on mine, although God knows I tried — and so far the best I can come up with is to "protect myself." I tell myself I can't be responsible for what she does (she almost 60), only for what I do. Lonely, but not soul-destroying.
Elizabeth, I totally support what the other ladies have said - your first decision was right - they are both your daughters - treat them equally - your disabled daughter would probably love to have been married, with children, been able to have a good job and had a husband who loved and was supportive of his children. Hopefully your (entitled) daughter will ' get over it'.
Miss all of you, and check on what is happening with you-all.
It’s been 11 months since Rene passed … like all of you who have passed through this, life has had its ups and downs. As Elizabeth said about her husband, Rene is always on my mind. For the first 8 months I fought so hard to get information about what happened - was it just a stupid, unthinking mistake on the part of the PSW, or was it something malicious that she kept on her IPHONE and could post to a website ‘for laughs’? He was 88, and that was so hard for me. He had been such a private man, and would NEVER have consented to such a video … now would I. They (the City of London who is responsible for Dearness Home) and the Legal Department ‘maintained their stance’ that I had no right to the information, even though I was his POA. After 4 months of wrangling I contacted the London Free Press, who did a few stories. I filed FOAs with the City of London and the FOI at the Police Dept., all, in the end to no effect. I have written letters to the Mayor of London, the Privacy Commissioner for Ontario, but the City (Legal Dept) maintains their stance ‘you are denied because of privacy and confidentiality”. That just fuels my anger. I think Rene would say, ‘you have done enough … take it easy …. Rest now”. I am SO trying to move on, but the recent stories from the London Free Press about abuse at LTC homes incense me to keep responding, and hoping that things will get better. Rene is gone, but others remain. Now the Mayor is embroiled in a scandal … he always promised ‘transparency and openness’ – how can I not respond to this by pointing out his refusal to give me information? I sound like I have a one-track mind, but am trying to move on. God bless you all, and thank you for thinking of us (Rene and me). Tomorrow daughter and I are going by train to Toronto (daughter has medical problems and can't travel alone) She lives in the same building, but 4 floor below.
Hello, Margaret, I had been wondering where you had gotten to, and hoping all is well.
Thanks to all for the wise, kind, comforting words about my family situation. No sign of DD or the grands--I think I've been set out on the curb with the garbage bags.
My life is kind of creepy. I look over my shoulder and I see the carnage spreading back over the last dozen years and it makes my flesh crawl because that didn't happen to someone in the newspaper - it's happened to us, and it's why my life now creeps me out.
I'm not talking about Alzheimers. I get that. I'm talking about taking a real look at me and trying not to throw up on my shoes. I'm a bloody mess and my life is a shambles and I'm saying that today where I've come back some distance from just wandering around stunned in the war zone.
This disease has ravaged my world and has turned me into a husk that measures absurd things as progress, counts minor chats with neighbours and phone calls as social interaction, and sees life as getting through the day afraid that there will be setbacks to this paltry excuse for existence.
I don't buy that I am grieving as the dominant oppression. I believe that all the horror and all the stress and the anxieties and the powerful depressions that all come with this territory are turning my classification from grieving Alzheimers spouse to an individual with post traumatic stress disorder.
My primary reality is the same reality as anyone who loses their life partner whether it's by a sudden heart attack or cancer or any other cause. I'm in the second year after my life partner died. I can't tell how different I would feel today if Dianne had fallen over with a sudden stroke and died in February 2015 instead of dying after AD. I know four people who went through that quite well and three of them struggled for several years. The fourth knew he really didn't want to live alone and found a nice woman on eharmony. They are planning to get married next spring and I will be attending. One woman is doing better renting her daughter's basement apartment. The other two seem indistinguishable from me.
In my case, I argue that all that happened on top of what was already happening which needs no further description here. It isn't the form of my reality where my widowerhood dominates as I just said. It's inside me where post traumatic stress disorder resides. It's the condition my condition was in.
Follow the logic. How were your thoughts and feelings, your mood and your state of mind shortly before they passed? How normal was that compared to how you usually were in your life? That answer has to be massive or the denial has to be massive. You were not Mother Teresa before. You became that by force of reality. I'm not interested in who all were nurses - that is a transport of topic.
PTSD. I had traumatic things happen for a long time which were very stressful. They ended but the fact of them didn't. They are the disorder in the post period. Post traumatic stress disorder.
There is an almost perfect symmetry between the disordered person and society's ability to skirt around them. They live in the same world but the disordered person rigidly controls what interaction occurs usually with a defensive mindset. In my case I'm now steadily living in more of my house but all outside interactions have largely been missions. Some of those missions were going out with friends or to events to have a good time. I've had genuine good times. That means the ability is still there but what my life is, is measured in months and years - not moments.
I've finally figured out, I think, what my resentment is. I resent the fact that I now have to face all this - recovery, grief, and an unwanted life with no one but me in it. I understandably have a feeling of desperation inside and that's one of the main reasons I project so much need onto anyone else still in my life.
I think it's revolting how hard it is for people to genuinely help themselves and even more revolting how hard it is for people to genuinely be empathetic with themselves. The blind spot of society which no one teaches. How you should behave, yes. How you should think about yourself, no. I've already had my fun with the world 'selfish', but the truth is that it's very sad for me.
I was the same until I really needed help in early 2012 and then just as in this afterwards, I took that seriously and had long learned not to worry what the rules up to that point were. I literally grabbed my inner voice by the throat and let it know it works for me. "Someone is in my corner!" is literally what I demanded over and over. That's recorded in it's time on the resident sticky thread. That's where I learned by force of will to start caring about myself with my full game on. In other words with utmost sincerity and reality.
I think of myself as an alpha male. Let me explain. I don't care what others are doing because I trust what I am doing. I live in fear but I look around and then I listen to what I think. I only follow others when they know more than I do or there is some obligation. I'm not interested in what I'm called or how I look. Everybody lives in a world of their own and I'm trying to run mine.
I explain that because the weirdness of saying that and watching me emote trying to protect Bambi may seem disjointed but that is in the eye of the beholder. Alpha males don't just fight. And frankly male only enters into it by gender teaching. All my life I was taught to suck it up and face it. That has an effect. I'm used to thinking about life as something I have to fight through to get through.
Real value isn't in displayed domination. That's a childish game. The real tests and the really good games are seeing what you can do without buying into the crap that you graduate or that your pile of stuff is you. I would think this experience would be enough to teach that the pile of stuff we have means squat.
You don't fight depression or PTSD or any other of that family of things anymore than you fight a hurricane. You build storm cellars and when the hurricane comes you go in them. You have to do both. But this isn't a hurricane and it's not going to kill you. You can stand out in the open and nothing will happen. It's not the storms that matter. It's the storm cellars.
I want my life. I'll figure it out. I know why it all rips away at times. I'm right that this is nuts - that's not what's wrong - this actually is nuts. It's over. It ended and time has switched sides - it's on MY side now. I need to relax in the maelstrom (good luck!). I need hand holds. I need to know the worst moments also pass. I need to see there are things still here that I like and that mean something to me and that I want. I need to know I'm not going to be fully out of this any time soon but I've been through things that make people run away screaming - and I saw it through. I've done things I never imagined and eventually I'm going to see this through too.
There. Some storm cellars.
I'm going to be my own experiment I said. Ha! How true that was.
I don't think about Dianne most of the time. She moves in and out according to what I'm thinking but those are moments and my days are all day. It feels comfortable. My main thoughts are that I wish she were here and that she got short changed. It's what it is because that's what happened. I largely accept that, I think, and I want peace for both of us. We had our years and that is not a sad tale. It is full of life. She got sick. We know that story. There is me and there was Dianne and there were me and Dianne. No disease graduates into that level. Neither does my mom which would be more relevant.
....
Message to Al Zheimer. I will never stop. Watch me. Oh that's right, you can't. There is no Alzheimer's anywhere around me and I say that with the same confidence as with cancer. I won't stop though. Not ever. Don't mess with me.
Elizabeth, As you probably realize, your daughter is using the children as ammunition, withholding your access to them and giving you the silent treatment until you capitulate to her financial demands. You see this tactic used a lot in divorce litigation, although in that setting, the courts often take measures to put a stop to it.
Elizabeth: Could you say to your DD, "You were right. I did need to rethink my will, the way it was set up, and have made some changes. Now I don't want to hear about this any more."
And then, don't tell her anymore. Nada. Whether you added a semi-colon or did major changes, she absolutely doesn't need to know one thing about the will until after you die. And make sure it is in a place where prying eyes wouldn't find it.
Marche, I agree with this part of the conversation to have with the daughter: "I don't want to hear about this any more." Marg used a good word to describe this daughter's present attitude, "entitled." Unfortunately, a lot of of our kids feel that way. Wouldn't the daughter be encouraged to continue to misuse Elizabeth's kindness if by acting aggressively she is successful in not only having a house paid for by Elizabeth, a free babysitter but more than half of her mother's estate? Not a good lesson for her, I think. And when Elizabeth died, this daughter would find out that her mother lied to her. A better remembrance for the daughter will be, "My mother always acted with integrity." It will help her strive to do the same.
I would add to be careful in decided to to control the trust for your daughter. Obviously not her sister. And perhaps trusts for the grandchildren (not controlled by their mother).
I wasn't very clear. Elizabeth doesn't have to change a thing to her estate plans, just use words that say she "looked into it" and implies change, but no details. I like to think of it as carefully crafted vagueness.
In addition to making sure that the papers are not read before death and this storm of entitlement whips up again, I also think Elizabeth should consider the possibility of being discovered on this site. The date of death is an identity give-away. Is there any possibility that grandchildren, playing around on grandmother's computer might stumble across this and inform their mother? I guess I am sounding a little paranoid but things like this do happen.
Marche, You make a good point about identity. Because the subject is not specific to W&W and might be of interest to many of us, I'm starting a new thread called "A Safe Space."
Thanks for clarification, Marche. How about this: "I did need to rethink my will, the way it was set up, and have made some changes. Now I don't want to hear about this any more." (Omit, "You were right.") Paul has made a good point, too, about who should control the trust for the handicapped daughter. I favour a lawyer rather than a trust company. One short-term suggestion to protect Elizabeth would be for her to edit out all references made to daughter. I guess we'd have to do the same with our replies.
Excellent point by Marche, Mary and myrtle. How does one edit old messages? I will omit her name from all my posts, and omit Rene's name from my signin, although everybody knows now who I am. There have been some goings on in London - scandal in the Mayor's office, but in the last few weeks a few stories about abuse and neglect by a PSW (28 cases, but 19 confirmed). Every time this happens I respond. As Gourdchipper pointed out, I may be butt headed, and not want to let it go, but if I can bring even a bit of attention to these problems in nursing homes, and can make even a bit of difference, I feel it is worth it. Anyway, maybe someday I will find peace ...
Ummm, Just a reminder - elizabeth has not asked anyone to do anything about their posts. We are clearly free to edit our own posts as we like but if we're doing it for someone else's benefit, maybe it would be best to wait until we've been asked.
Margaret, It would be ideal if you could find a civic group devoted to the welfare of people in nursing homes. Joining such a group might allow you to use the knowledge you gained in the matter involving Rene and also feel that you were contributing to the cause. Do they have ombudsmen (or is it ombudspersons?) who assist people who have disputes with nursing homes in Canada? If so, maybe you could be trained to act in that capacity. I think you would be an excellent representative.
I'm reading all these posts...still stunned and kind of shot down...like I'm a character on Star Trek and someone hit me with a phaser. I'm not worried about privacy in this particular matter, or on the other threads. The grandchildren are not allowed to use my computer--it's the only one I've got, and I can't allow it to be a plaything. It's just a MacBook Air 11", not much bigger than an iPad and not taking up much space on the kitchen table. They are only 5,7,and 8, and only interested in cartoons and games in any case. The executor of the will and the trustee if need be is my younger brother, a businessman who works internationally...i.e. he is sophisticated enough to be able to deal with it...also, he has a chronically-ill child and "gets" (understands) these things, unfortunately.
I do appreciate all the helpful comments and support. Needless to say, I'm feeling very alone, but getting on with things. I do still see the grandkids when needed--last Friday the 8-year-old was dropped off at my door for the day (my phone battery had died--so I didn't know they were coming). She had a sore throat and while not well enough to go to her day program, she was well enough to take a couple strolls in the park with me and the pup. I got a text this morning asking me to pick up all three at 4:30, so I will do that and they can have snacks and TV at my house until DD picks them up on her way home from work. It is difficult when there are children involved--what can you do?
Wolf does a good job of describing the Alzheimer's aftermath, and I think he's right that depression and PTSD can play their parts. I think I've come through a lot of the depression...PTSD I'm not sure about...I don't really have the symptoms of it, although it does feel like I've been through a war zone...a dreadful, traumatic experience that many people don't understand. Probably we all can relate. What I'm finding at one year and nine months out is that re-juggling my place in the family in the Alzheimers aftermath is a much bigger problem than I ever would have expected. In my part of the "clan" so to speak, these harrowing social dynamics are a direct result of banding together as a family to deal with the Alzheimers. As I've said a time or two on this forum--it was good for Larry, but is turning out in the long run not to have been advantageous for me.
So I'm pulling up my socks and taking a "Journey Somewhere Else." See you there!
We'll see what elizabeth decides. I don't know how to edit posts. Can you, or someone, advise after elizabeth lets us know?
Myrtle, it seems I have gone from one caregiving experience to another ... many problems, and lots of stress.
I love the idea you have presented though, and HOPEFULLY things will lighten up a bit in a few months, and I can pursue this. Looks like I am in for a while, though ..no wonder I am now only 4'10", ha, ha. Your idea though means a lot to me. I hope that your husband is doing ok - hope you are enjoying your little outback shed, and your cats.