Katlady37, I am so glad that others feel the way I do. Yes something definitely has changed. I prefer to be knitting at home or at my knitting groups, or with the new people I have met since he passed. My family, however, does not understand. I think they want things to be the way they were. The latest scenario is that my siblings and I are getting in home care for my mother and I told my sister who is POA what I can afford to pay per month for her care. I did this because I have no idea how things will go for her and I refuse to put myself into a situation where I am financially strapped again. I have been there and done that. I love my mother but have learned to set limits. Now my sister refuses to speak to me because she and my 2 brothers will have to pick up the difference. I just say oh well. I am done with drama. I have said many times that people who have not experienced this horrible, horrible disease have no clue. Now I find out my brother is coming for Christmas and even tho it is only May I am dreading it. I may just set a vacation for the week after Christmas.
I feel like I'm far enough away from it to see things more like me, but I'm also still in it enough to see that my behavior and my thinking aren't ordinary. It's like I'm coaching myself or in training to be a person or something. I come from ten years of quite a bit of stress and trauma and then over a year of grief. I have to try and cut myself some slack while trying to figure out a healthier outlook and relationship with my life now.
I think it might be true that sufficient recovery from those events plus a foothold of comforts and things to believe in - come together and meet in the moments that develop my new life now. I can still go through routines like what to have for dinner and talk myself into and out of all kinds of things. I have a number of spin cycles like that. I used to have a lot of them and spend eons of time in them. 'Just keep going no matter what' is one we all learn but that is a deadened way to live and it is no longer necessary for me. It's also hard to reforge that into 'relax and lets do something we like more'.
I told my neighbor what I'm going through and I've had an outpouring of support. They came over to make sure I understood they would drive me anywhere I need including the upcoming tests. I was trying to get a service to call me back because I don't know anybody in this city enough to ask to help me like this - and here help came to find me.
My leg has healed a ton and is virtually normal. I went through my list of things I dreaded facing and got them done. I'm struggling with my painting but it's coming. But I watch my Toronto Raptors in the playoffs like a statue. I just haven't had normal feelings since Dianne passed because it feels like they're wrapped in bales of cotton batting.
And instead of a list of things I was dreading, I have a list of things I've gotten done and I am trying really hard to have feelings about that. I can appreciate it and I know it's good but that's not the same thing as feeling good about it.
I have more things to be thankful for here than you can shake a stick at, including that if the health card thing hadn't happened over just an eye exam - I would not have one when I'm going to need it. This is a road of change and there is no doubt.
I learned something from this. I learned there is a deep reluctance to accept this inside me and I learned that deeper still there is some barrier that I'm not entitled to this life or that it's wrong somehow. This feeling doesn't have articulated thoughts. It a deep waters thing. It might have something to do with Dianne or my own fears or it might be something I don't understand yet. It's there though and it acts like a barrier or maybe more like a drag. It shows I'm far too entrenched in my own protection still I suspect. Steady as she goes.
There comes a time when the razor is a razor. Some things of theirs are meaningful. Most of the stuff is just stuff though. Dianne had two five foot rack closets stuffed with clothes. I remembered the vast majority of them but some were double takes. Dresses I'd never seen before. At first it's very hard to throw anything of their's out because it all seems so personal and eventually you realize you have no plans to move around with two closet's full of women's clothes the rest of your life.
I know exactly what you're saying and even the expressions you're using about other people right now. If they don't phone back they must not care and if they do I couldn't possibly make it. I'm not being a prima ballerina, I'm a recovering long term illness caregiver. I walk into a good mental health doctor and it's a sure bet they will diagnose issues in me.
I think one of the key's getting through this part (what's next?) is reminding ourselves that we are authorized to try and find ourselves and be ourselves in this new and challenging situation.
.........
The rest of the board agrees that the caregiver only matters when they're on the job and that once our spouses die, caregivers never matter here except to immediately help others.
It's obvious that the main job of this board is to help people through this experience and then breathtakingly never support them again. Just talking on the widow thread about trying to get our own lives back by recovering from this a little makes people feel ashamed.
Notice that caregiving for two never took Joan out. Losing her dad and still caregiving never took Joan out. Afterwards took Joan out.
I don't advocate living here forever. My position is that after forming support bonds here when our spouse dies we shouldn't just give them a * and tell them to please never mention the problems they earned going through this.
Don't mind me. I get upset when human beings are thrown overboard for no reason. I also get upset when unique value is created and then thrown away unused. I'm not looking to get help anymore. I did but I started that weird thread to get through that myself. Even though no one talked to me there it helped to go through a process that felt like I was talking to someone about it. It's unique and that's appalling.
I'm the only one who's been saying this here. No one has agreed or disagreed with me because no one has even commented in the several places I've expressed this now. Instead Elizabeth feels reluctant to talk about her" trivial" life even on the widow thread - even though when she does, she gets comments about how helpful it is.
I don't have issues with this board. It stands alone in the purity of what it does. I live outside the boxes and I change things. That's my job. I originated a place for people to talk about the experiences of placement and I originated a safe place during the holidays. I am now pushing this change. Not for me. But because the thing that is missing is the thing that gives the board itself an ongoing life. It also gives Joan miles of undiscovered but very helpful country to blog about.
The treatment of recovering caregivers everywhere is abysmal. I'm going to be writing about that and pushing this into people's consciousness. Not here. It's not just Alzheimer's that treats recovering from long term caregiving like it's leprosy.
"The rest of the board agrees that the caregiver only matters when they're on the job and that once our spouses die, caregivers never matter here except to immediately help others. It's obvious that the main job of this board is to help people through this experience and then breathtakingly never support them again. Just talking on the widow thread about trying to get our own lives back by recovering from this a little makes people feel ashamed. . . . My position is that after forming support bonds here when our spouse dies we shouldn't just give them a * and tell them to please never mention the problems they earned going through this. Don't mind me. I get upset when human beings are thrown overboard for no reason. I also get upset when unique value is created and then thrown away unused. I'm not looking to get help anymore. I did but I started that weird thread to get through that myself. Even though no one talked to me there it helped to go through a process that felt like I was talking to someone about it. It's unique and that's appalling. I'm the only one who's been saying this here. No one has agreed or disagreed with me because no one has even commented in the several places I've expressed this now . . . I don't have issues with this board. It stands alone in the purity of what it does. I live outside the boxes and I change things. That's my job. I originated a place for people to talk about the experiences of placement and I originated a safe place during the holidays. I am now pushing this change. Not for me. But because the thing that is missing is the thing that gives the board itself an ongoing life. . . The treatment of recovering caregivers everywhere is abysmal. I'm going to be writing about that and pushing this into people's consciousness. Not here. It's not just Alzheimer's that treats recovering from long term caregiving like it's leprosy."
Yikes! I feel terrible that you feel this way. It was my impression that many people on this board do care about you quite a lot and have expressed their appreciation of your posts (including on the thread called "Journeys Somewhere Else"). I do not fully understand a lot of what you have written on that thread (maybe because I am so literal-minded), but I read all of it and got some of it. I also read everything that is posted on all the other threads, obviously including this one. I think it would be a big loss to us if you moved from this board to somewhere else. But if you do that, please let us know the new location, so we can follow you. Anyhow, I do not feel that you or others who are recovering are lepers and I apologize if anything I said made you feel you were being treated that way.
I read this thread right along with all of the others on the board and I have learned an enormous amount from those of you who are struggling to put your lives back together after caregiving. What I have learned is that the "after" is as individual as the "before."
There is hesitancy in posting on this thread because I don't officially qualify for it. But for those of you who do, I ask why this thread isn’t enough? Do you really need to move somewhere else? It feels a bit like the old exclusion problem: I don't qualify to read or share in your thoughts.
That said, we all do what we must do to survive and, of course, you have the freedom to share with and where it is most beneficial for you. "It's not just Alzheimer's that treats recovering from long term caregiving like it's leprosy." Yes. So true. And while this board is for spouses of AD, the lessons are life lessons that apply to any number of situations. I think that the * people have a lot to share, although many of them understandably move on. For those * who are still on the boards, how are we throwing their experience away unused? If anything, they are highly valuable contributors.
I cannot quantify what I have learned on this board in the last six years because I am a different person now. But I do know that what I learned has been an integral part of this whole learning experience, which is, after all, called life. And as we have been marginalized by society, here we have been embraced, supported and informed. As long as we draw breath, we are still in the life stage, of which any other classification is just a subset.
Am I missing the point of your post, Wolf? Did I misinterpret it?
All people who face recovering from long term caregiving face a deep isolation period. They are in shock from the death and funeral and we all know what we go through for a long time. That can be as shaky a period as crisis points within caregiving.
I have no issues about how I've been treated here. I've been treated well. I've had plenty of help and plenty of expressions of appreciation over the years. I've even had fun.
The issue is societal support for recovering caregivers and my argument is that we waste humanity in our current approach. Our current approach is to get long term caregivers through and then abandon them when that task is complete. That extends far beyond bulletin boards but it is in a board like this where an opportunity lays to capture the life cycle of the alzheimer's spouse's experience with the disease to include recover(y) of the caregiver.
It's not an earth shattering point. I'm certain it would promote healing and healing speed. I've laid this out in detail in two places and today I saw someone question whether their life mattered enough to mention it in the widow thread (my interpretation).
I apologize for upsetting anyone. I believe in the ideas I believe in and that's the only explanation I have. I also wasn't planning to leave. I'll try to behave.
(Marche, the point is to influence the design in caring about afterwards)
Wolf, OK, So . . . AS USUAL, I got the whole thing wrong. You were not talking about yourself; you were using the last two sentences of elizabeth's post as an example of how this board is not serving those whose spouses have died. The problem is that we can't give what we do not have. Specifically,
This thread is for those whose spouses have died. Although many of us read the posts and sometimes comment, marche is correct that those of us who are not widowed are hesitant to post on this thread since we do not understand fully all the feelings and frankly, many of us stand in awe of death.
There has always been a tension between those who seek practical advice and those who seek moral support. Likewise, no matter what others are looking for, some people just naturally offer practical advice and others offer moral support. So, for example, if someone who responds to an entreaty for moral support misunderstands the original message and posts a practical response, it can be taken as cold-hearted.
Elizabeth, My first instinct was to say: "It sounds like you need to visit Phyllis and Larry's spot overlooking the Hudson. How long before that dog can be put in a boarding kennel or ride as a passenger in your car?" But I squelched my instinct to say that because it sounded like I was being bossy and insensitive and minimizing the depth and complexities of grief by suggesting it could be alleviated by a road trip. And, no, you do not sound whiny and your issues are not trivial in comparison to the issues of those whose spouse are still alive. Quite the opposite, I would say.
Wolf, here is my widows' input....... Nearly seven years later, my husbands' clothes are still in the cupboard. And I do not intend to chuck them as, 1. Sometimes I wear some of them 2. The cat often likes sleeping in there and 3. I couldn't bear to see all that empty space! If that sounds really crackers, who cares! I hate that my husband died but at least he did not suffer more. I hate being a widow but I survive, (and I am not wishing for anything more.) I come here often because you are all a part of my (very small) life and for those of you wishing for more, good luck and all the best!
OK, thanks to all for validating that it's all right to come on to widows/widowers and express feelings and sort of verbally explore and illuminate the path. I think it's a lot like a soldier coming home from the war in Afghanistan or wherever...like from WWII, or from Vietnam...and finding out that they are totally on a different wavelength from everybody else. No one can comprehend what they've been through or what it's done to them, so it's hard to relate. Myrtle, you said it so well--how soon can I board Bandit here or take him with me to NY. I am figuring that out as we speak, because I have to go up to NY pretty soon to sign a new will and of course go to the cemetery.
Now, speaking of the will (should have been done months ago...yeah, yeah, I know. But my will leaves everything to Larry, and making a new one is just another part of the good-bye. It acknowledges that he isn't here any more.) I have spoken with both my daughters and will just set it up so that they each get half of whatever remains in my estate when I die--half to Ohio DD outright, and half into a special needs trust for disabled DD in Colorado. So disabled DD is fine with this, but Ohio DD threw a major tantrum and stalked out of my house tonight with the kids--says she is being slighted, as she has worked hard her whole life (quite true--she's a hard worker and a good employee), but as disabled DD has never worked (not exactly true, but hasn't worked much) it is not right that net worth should be split evenly. Ohio DD while throwing a fit asked me if I was even considering the fact that she has three kids. I said "no." Well, Good Lord, they have parents don't they? Whom I would certainly expect to take care of them...it's not my responsibility. Anyway, since Ohio DD has been given plenty over the years, and her comment, "Well, don't expect any care from me!" shows me clearly what I can expect in my old age, I will be keeping her at as much distance as I can. She reminds me of that old Elvis Presley song "Little Sister." ("She's mean and she's evil like a little boll weevil, etc. etc.) Sheesh.
I suppose I should go whole hog and admit that doing the grocery shopping and cooking for the five of us Mon.-Fri. is not going that well either. We don't sit down at the table together as a family--DD's family has never done that. The kids sit in front of the TV and watch cartoons (DD doesn't have cable, so the kids love the cable TV at Grandma's), and DD talks about her job endlessly or texts back and forth with co-workers while I dish up the food, sit at the table and eat quickly while jumping up and down for the kids or taking the dog out, and then do all the kitchen clean-up. DD is also not giving me the food money until way late in the month (it is the 11th, and I still don't have the May grocery money)...it's basically just a situation that is disrespectful to me and frankly a lot of work and expense that I need to obviously do something about. I had already told DD that we would keep things the same until school was out in early June, but that then I felt we needed to make some changes to our system. She got very snide, saying that, "obviously I wanted to pull back from being so involved with the children." Yeah, right. She doesn't see that it's not the children, it's her. There is no adult conversation to hash things out, like with Larry. With DD, she just throws tantrums and insults, and tries to bully me. Sigh. She is bitter that she has to work, when she apparently married to be a stay-at-home wife, but good grief...most of us work. There is nothing abnormal about having a job, and in fact, there is a lot to be said for it. And frankly, her life would be easier with her husband in the picture, but she made her bed and now she has to lie in it. As they say. All she seems to care about is how much money the people around her (me, her dad, her ex-husband) are going to give her. This is a well-educated professional with a good federal job and a paid-for (by me) house at age 38. Good Lord. I am glad that my parents didn't have a pot to cook in or a window to throw it out of and that I had to pull myself up by my bootstraps, as did Larry. You can say what you want about me--probably too gullible and family-oriented for my own good, but at least I'm not a grabber.
My point being that my current circumstances are the direct result of the Alzheimers experience. Hooking up closer to family as Larry went downhill was good for him, but it is turning out to be not so good for me. It's hard, because there are three children involved who lost Grandpa Larry and Grandma Helen (my mom) in the same year that their dad got tossed out of the house--it would be so bad for them if Grandma left, too. I will let all this percolate for a bit. Boundaries are the key, but I don't know that I can set them and keep them up. There is always and endlessly something that I need to do for the kids, like just drop everything if one of them is sick. Well, 15 minutes of harp time per day and one page of creative writing is my absolute minimum, no matter if the sky is falling in. So I guess that is the best line in the sand I can set for now.
I was going to say sorry for the long, TMI post, but I guess it is OK, and we recovering caregivers have to go through "stuff" on our way back to normal, authentic life again.
I'm just making a coffee. I see the getting drunk thing didn't make the final cut. I know your daughter because she's just like my sister.
edit - I was going to add that Myrtle and Marche and everyone is going to find that when they get here - this thread will be exactly what everyone made it.
Oh God, you saw that before I edited it out. : D Well, I still might do it, but limit the alcohol to a glass of wine or two with supper. Hold that thought.
Elizabeth, so it's you and her and the kids living in the house you bought her, where you are the nanny and maid while she carps about sharing equally with her sister and doesn't cough up her contributions because I'm sure it's driving her nuts that she HAS TO PAY FOR THAT!
Sorry, but I'm always going to know what she does and says before she does. She won't change because this is a type and I don't blame your daughter for being herself either. Nothing given is enough and anything asked is trauma land. She's not pretending. People like that don't have pets or lifelong friendships or even close friends because they don't know how to have those kinds of feelings. She doesn't want to hurt you. She just can't think in ways other than herself because she is this type.
In some ways you may be trying to save the kids from their mother which can't possibly work in the long run and in some ways you may be trying to belong with your own family offering piles of money and work to help out. Things like that have been done for a long time and usually there's some compromise especially when the help given is so strong.
The issue may ultimately not be the circumstances or the timing. The issue may ultimately be that DD is like this and is not going to change. You can slog for five years doing this and the second you displease her - she will blame you to her children and spew green slime all over your nice house - I mean her miserable dump.
These are tough times for you. If I were you I would pull the creative writing page out of the typewriter and stick in a new page that is titled "THE PLAN" and then I would sweat to use as few words as possible to tell myself the absolute Elizabeth truth. If I am too lonely right now and/or I need some kind of anchor right now (even if it was abusive which this isn't), I need to know that.
I should also point out that everybody has personality wrinkles but what you're doing for family is a lot. I wouldn't question that at all if I were you.
The thing is like everybody else you are in a washing machine in a spin cycle lurching down the road until the cord snaps. The only type that gets out of the kind of experiences we've had briskly - are robots. Humans don't.
So, back to THE PLAN. THE PLAN isn't a plan. It's the most honest assessment of what I really feel, think, hate, and want so that I "know thyself'.
The bitch makes noises. What do you really want? (pardon me and don't know is a perfectly good answer - in which case stick with this for now and give yourself more time to figure things out)
One question is "is she manipulative"? You can figure that out. If you can almost always predict how she will react, then she's not manipulative. If she seems to change her tact to get what she wants - then she is. I doubt she is. Manipulative people tend to understand they're driving the cash cow away.
You are only going to grow into a fuller life on your own (I don't mean proximity to anything), it's going to be inside you because they're your feelings and they move around with you. I don't have those kinds of feelings yet. That's why I yap about them. Until I do, where I am and even what I'm doing are like refugee camps I understand one day I will be moving out of. When I want. When I understand more what I want.
I'm sorry that you're going through this. It's unreasonable that it's like this. My feelings are kept safely in a locked box. I can't imagine trying and getting buffeted around like this.
Thanks, Wolf. Lots of great insights. Actually I have my own house ,a little two-bedroom flat ranch just across the road from the park. (Where Bandit and I have just spent a pleasant hour--me just strolling along, and Bandit enjoying sniffing grass, rolling in dirt, and trying to jump and wiggle toward every unfortunate person trying to have a peaceful walk.) DD is three minutes away by car (also walkable between our two houses) in the five-bedroom, three-bath house I bought her. Basically, since NY house prices are so high, I was easily able to buy two houses down here mostly with the proceeds from the NY house. It was meant to be an early inheritance for DD and s-i-l, and of course would benefit the kids, too. Then I figured we would all spend the rest of our days happily ever after enjoying a pleasant environment and tranquil, cooperative family life. Oh yeah, right.
Larry had always wanted DD to have a legacy from him, as they really did have a common bond in that they both work/worked in law enforcement.
It's up to me to push some thoughts in order to bring new ones. I wasn't kind to her but not too far off the mark. The point is what YOU can make of those thoughts. At least that's what I think helps people see better.
The hardest part for me is to try and figure out exactly the kinds of things I am. Where do I belong? What am I going to do? When am I going to feel better? How do I discover any of this? I haven't arrived at any real answers. Instead the most helpful thing has been to remind myself often that I'm in a car or on a train to a new place and I'm no different from a child imagining where I'm going might be like - except I have to live in whatever it is, while that child is just visiting.
I lied just now. The hardest part for me to to keep in mind that I feel bad all the time not because I'm screwing up or am inadequate - but because grand canyon leaps like this from a crippled state are actually hard and take time. I'm getting through this and it's slowly getting easier. It's ok.
My inclination is to suggest you go out to one of those places you've considered or somewhere new. A new outfit from a different store. Nose through a bookstore and see if you can find something different to read. Go to an italian or Thai restaurant. Find something with Google maps on satellite. Is there a little museum or some historical site you might visit for an afternoon?
I feel bad pretty much all the time. Feeling good is rare and feeling neutral is sometimes. The point is it was only two days ago I wrote this in my journal:
"Everything feels bad - isn't that a depression?"
If I ask myself straight up I already know I still have some forms of depression in the year after. The problem is that my spirit doesn't want to dwell there for good reason and so I end up asking myself why things are so hard instead. I suppose that's good that our spirit keeps trying but it really is a juggler's game right now.
Except for one thing who's glare breaks into the dark like a giant lighthouse. Evidence. The things I know to be true because I have measured them. There are far fewer storms. The storms are much milder. There are some things I like now. I can look into this unknown and not be overcome anymore. I've made some changes that are working. I have less fear and anxiety about everything. It's all documented and measured and so it's real.
That is my rock. I'm getting through this and I'm getting somewhere. I don't understand yet but that evidence is more than enough to keep on going.
Cassie, there is no right anything about this. I suspect everyone would like to feel a little better and everyone is coping in what ways they can just like I am.
I can sound any way anyone likes but the truth is this is hard.
Where do I belong? What am I going to do? Yes, these are very typical feelings, or at least I think so, for a surviving Alzheimers spouse. And I do think the depression can linger on, not in agonizing misery, but in the "blahs"...not really feeling like doing anything or initiating anything new...but just wanting to sit and "be." I tend to think it's just as necessary to go through this as to go through the fires of despair that we do in the first months or year, or whatever. It does seem to take a lot of time, with peaks and valleys that I imagine will even out in the future as we figure out our new selves.
If the forum can stand one more family note: DD has been texting me with vitriolic nastiness all morning, and ended up with a very nasty, shouting phone call. I am just bamboozled at the moment--must be either a very simple person or a very naive one. Trying to be a good family member and build something constructive and supportive for us all has certainly backfired on me. The short story seems to be that she is selfish and immature beyond words. I say that gently of course. And no one outside this forum will know about this--I will maintain a smoothed over, lovely party line for outsiders. I'm truly not sure I can stay here.
This thread has so much food for thought ....I am trying to wean myself off all things 'Alzheimer's' and don't post that often but just have several thoughts:
Cassie - your comment "I hate being a widow but I survive and am not wanting anything more' says it all so succinctly for me - so simple and so true.
Wolf - like others have said I don't always 'get' everything you say but I love that you freely put out all your fears, frustrations and feelings and hope you don't stop.
Elizabeth - like you, I also have two daughters. They are twins and will be 35 next month. They are both teachers and each has two children. One is married to another teacher and one to a lawyer; obviously the one married to the lawyer is in a much better situation financially, and other daughter certainly is not shy about putting that out there. She has quite an air of entitlement! I also have a son (30) who is married (no children) and also has a law degree; he hated the adversarial and confrontational nature of the practice and walked away last year (SHOOT ME NOW!!) He is doing private tutoring while waiting to return to school in September. In spite of their varying situations, I have tried to stay firm and make all gifts, financial and otherwise, as equal as possible and in my Will everything will be split three ways.
Don't know if it will make matters worse but perhaps you should give DD a bill for services rendered to her over the past 5 years. Yeah, this would probably be just pouring gasoline on the fire. Silence is golden.
I so enjoy reading other's perspectives on this grief thing. I am currently on my first real trip since his death- a time share in Florida. I have to return to reality tomorrow. I think wolf's suggestion to try something new is a very good one. This was something new for me. What is happening now is that my oldest son now feels responsible for me. I love the boy but he is immature--always has been and gone thru 2 divorces in 10 years. He wants to know what I am doing, who my friends are, etc etc and I now realize that I have to speak up or this will continue. Like you Elizabeth I want my own life and maybe when I am old and feeble minded I may need his help but right now I don't so I have to communicate that in a kind way. The biggest changes I have noticed since his passing are the changes in family relationships. I cannot exactly put my finger on it but something is different and I believe my family members don't get it. My oldest son has no family except his son and is leaning on me now for support and I do not want to be his emotional source. All my other children seem fine --it is only him. Like Nbgirl* I am weaning myself off of all things Alzheimer's. I stopped going to the support groups and finished the last of 2 bearevement groups. Elizabeth, your questions of "where do I belong? And what will I do ring so very true. Those 2 questions I believe will not be answered anytime soon and they are part of the Alzeimer recovery journey. I look back over the first year of caretaker recovery and I see that I See that I have made progress---this trip, joining a new ministry at church, made about 3 new friends that I did not have before his passing. For that I am grateful. At times I wish the recovery were quicker but it seems to have a mind of its own. Elizabeth, I fully understand you questioning if you want to remain living where you are or somewhere else. I know for me I have had to rid myself of toxic people and some are right in my own family.
elizabeth, This is not a healthy environment for you. After Larry’s long illness and death, you needed friendship and TLC but you got the opposite. It seems you get no affection or even good will from your daughter, who sees you (in Wolf’s words) as “a cash cow.” When you decided to say in Ohio, your strategy was to maintain parameters so your daughter would not continue to exploit you. That may have worked but it has got to be taking a toll on you.
As you explained it, your decision to stay was motivated by your desire to be near your grandchildren. But the personal cost of dealing with your daughter and caring for the kids every day may be too steep. What if you stay where you are and just see the kids for fun, without providing any babysitting or housekeeping services whatsoever? That would give you a lot of free time to meet people locally and would limit the toxic interactions with your daughter. These kids do have an involved father, and since both he and your daughter have professional jobs and she lives in a mortgage-free house, they should be able to afford child care. But I'm wondering if your daughter would deny you access to the kids unless you continued to provide services for her.
Another alternative is to move back to NY. You would be able to have some fun and would not have the stress of maintaining boundaries against your daughter all the time. In making a decision like this, you always have to consider what you will find there. Will Phyllis be sticking around for a while? Are there other friends with whom you could go shopping or to a museum or to lunch? The higher cost of living in NY is nothing to sneeze at and the sacrifices you might have to make might not be worth it. But if you plan on having $ left over after you die (enough $ for your daughter to fight over), maybe you should use it to live your own life, instead of leaving it to other people.
It’s a good thing you raised this issue with your daughter because it gave her a chance to confirm what’s really on her mind and what you can expect from her if you become sick or in need of care. In the future, though, I would suggest not telling her all your plans. She is not your friend and she has shown that she is prepared to take advantage of any vulnerability you might have.
One more thing . . . There is something very odd about your daughter's expectation that she would get more than half of anything you might leave. Parents can leave whatever they want to their kids but in my experience, it's standard to leave them equal shares of their estates (as nbgirl* is doing). Sometimes a child might get less or even nothing if she is a spendthrift, or a drug addict or something, or when the parent has already made a substantial gift to that child (like a house!!!) during the parent's lifetime. Your daughter's extreme reaction to what most people think of the default mode of estate planning is bizarre.
I have to agree with every one of Myrtle’s comments. Also, I think that your daughter is being emotionally abusive to you. Worse, she is setting a bad example to her children. Where is the gratitude and respect you deserve that she should be modeling and teaching her children? Two of your statements illustrate this: “up with a very nasty, shouting phone call.” “she just throws tantrums and insults, and tries to bully me.” Presumably the children hear and witness this. Don’t be surprised if your grandchildren act the same towards you down the line somewhere. I believe that, in spite of your admirable intentions, this situation is doing everyone more harm than good.
Mary has said some very sensible things, Elizabeth. And I would add that you should run away as fast as you can!! Also do what Myrtle said and use what money you intended to leave your children, to save yourself. Take care, cassie.
Well, a train wreck to be sure, and pretty excruciating. Thanks for all the wise counsel, and I think Myrtle has given the best summary. (Or maybe I just think that because my opinions and ideas are identical to hers. lol)
I may not post here as often--like others have said, I need to get off this kick of all Alzheimers all the time, and get a life. A lot of the posts on other threads lately relate to day care and placement, both subjects that I can't really speak to, as Larry just adamantly wanted to stay home and wouldn't touch facilities with a bargepole. And my one experience with respite care was so bad that I don't have much input about that, either. I'm glad others have had good experiences with placement, day care, and respite, and can contribute better input than I can.
Can't get the "edit" button to work right, but it finally kicked in and I deleted most of my above post--entirely too much information I suppose, but it is like talking to close friends--and I know it's all confidential--but I am adding to it to thank everyone for the invaluable support and advice. As I've said more than once, I could never have got through the past few years, and now the scary present times, without the help of the people here.
I have been basically silent as far as blogging and writing on the message boards for the 11 months since Sid’s death. This year of “recovery” as CO2* aptly named it, has been excruciating. Only recently have I begun to feel the desire and ability to write again. And do I have a lot to say! About widowhood, loss, loneliness, friendships, change, emotional pain. All of it will be addressed in a special “Widow’s Journey” section on the redesigned website.
For now, I would like to say that no one who has not gone through this could possibly understand what a long and arduous process grief is. It doesn’t miraculously go away after a year. When you lose a spouse, you lose your entire life – you have to rebuild WHO you are without the person who was by your side for decades. For me, it was my entire adult life. You have to review, renew, or drop old friendships. You have to make new friends at a time in your life when you had hoped to be established in friendships. You have to learn to live, eat, sleep, and go to activities ALONE. Or with a new friend of your same gender. You have to accept friendships that you may not have accepted in your married life, if you want to have friendships at all. You have do all of this while suffering the most unbearable pain of missing your life long love, and trying to come to grips with the fact that they are truly, definitely, gone.
To be honest ( as I always am), I have barely survived this year. There were times when I did not think I would make it. Nor did I care if I did. The experts and grief counselors are correct – I will never get over Sid’s death; I will just learn how to live with it. Slowly, very slowly, I am emerging from a deep, dark hole. I hope that the story I will tell in my “Widow’s Journey” section will help those of you who are traveling the same road.
My apologies that it is taking so long for the redesign to take effect, but it was a much more complicated process than I had realized. It should be set by the end of next week, but then I have to LEARN THE NEW SOFTWARE!!!! If that daunting project doesn’t pull me completely back into the world of the living, I don’t know what will.
Yes, it's not just having a hard time trying to make it through--it's the total not caring whether you make it through or not. We've all been there, I think. The exhaustion, the depression, etc. And it's amazing that you are handling the re-design of the website on top of everything else, but thank you so much, Joan.
I have been so frustrated the last few days trying to sign in without success. I was using my regular name and password but kept getting messages of the system not able to recognize that name and password.
Just this morning it dawned on me I recently added * behind my name. Once I typed in katherinecs* I got in of course.
I think that is fitting as I am really struggling. Thank you to those of you writing about "who am I now?" etc. I forgot on this amazing site I am now a name with an *.
I am SO grateful to know my lethargy, disinterest, and basic struggles of day to day things is normal. Scary but normal.
I really appreciate everyone's comments especially in this thread as my husband died 7 weeks ago.
Joan I am really looking forward to your Widow's Journey.
katherinecs*, Yes your lethargy, disinterest and struggles are all part of the grieving process. I just passed a year and although it is better it is still there. Sort of have to force myself to try new things and meet new people. It is just hard. Nothing easy about it. Try to focus on getting through each day as best you can, knowing that it is all part of the journey. I too am looking forward to the Widow's journey. I have looked at other widow blogs and websites but they do not compare with this one just because most do not deal with the long road of Alz caregiving.
I believe it helped me to look at 'afterwards' as a set of simultaneous things happening to me. For me it was not just one thing but a complex of things together. This may not be complete.
1. I was in a a worn down and beaten down state when my wife passed. I would have had real issues to deal with even if every other fact just disappeared.
2. Shock happened to me when my wife passed. I felt stunned for some time. Grief isn't well defined, but it is clearly serious and one of the most powerful human experiences.
3. I'm sure I still have milder depression and I'm certain I had all kinds of things and probably still have edges of PTSD (eg: unreasonable distrust) and certainly anxiety is still here. These serious states color all other experiences.
4. It felt like I was spit out into an alien and horrible world. Nothing had changed in the physical world but everything felt changed in my world. I had become isolated by Alzheimer's. I felt a serious detachment from everything because I was worn thin meeting the demands to keep going. The house, the things in it, almost everything seemed to be shoving reality into me in a choking way. Realizing literally that I was ten years older and had done nothing but Alzheimer's didn't help.
5. Every helpful thing in the first year or so falls into one of those categories. The use of blanket throws as comforters. Finding some food I still liked. Realizing I was sleeping well. Understanding I actually was under siege. Being just smart enough to go into the storm cellar when they hit. My journal is a riot of different things like some object bouncing off different walls with or without hitting the floor.
I didn't know I was gradually getting better at this. I read it in my journal. I didn't know feeling better is a relatively fragile thing that grows over time but has limits that also grow with time, I learned that from my notes too. I was still writing that it's all too much but at the beginning I was screaming it and then I was yelling it and then I was complaining about it and recently I still comment on it.
There is no let up because there is no journey. There is transformation. Call it what you want. Growing into it, getting used to it, accepting it - it's actually the transformation of myself into a person that feels normal and is living and occupied in 'now'. Where I go to do that is irrelevant. How different I now am from before is unknown and being discovered.
This whole 'afterwards' feels like a slow transformation in a number of ways where all of them seem difficult enough. They all add up to transforming from the person I was before and the person I was during into the person I am becoming. Ahhhhh!!!!
........
I honestly worried that I wouldn't make it. I thought I was getting the short stick everywhere. It turns out I'm one of the luckier people on the planet at the moment. I haven't figured everything out at all yet, but it feels like I'm going to. Actually feeling like that is priceless even though I'm sure I won't feel that the rest of my life or even next week. That doesn't matter. I got here. I can get here again.
Dianne was as lucky to have me around as I was to have her around. The fact that that was different at different times changes nothing. I'm very sorry she didn't make it. But I'm not sorry at all that I'm going to.
I've tried to summarize how I saw it into something brief. I feel like the swing point is that as I came to more places, I made more choices, and learned and am still learning that this is my life. It's up to me both trying to face the challenges and trying to learn to enjoy myself more.
The bottom line is that I learned and am learning to authorize myself in the different ways that come up and are part of life. I own this. It's my movie. It's up to me. When I feel like it. (thanks again Emily)
Truly, I would think I am going mad if it wasn't for all of you. I am going to trust the process, try and be as gentle with myself as I can and know it will get a bit easier in a few months.
Yesterday, a new woman friend said, "I hope you don't mind me saying so but I think you are depressed and should consider going on medication." Sigh. This is without me asking her opinion. She responded this way when I let her know unfortunately I simply didn't have the energy to do an activity we had planned.
I didn't engage in the discussion. What I have been telling myself is I am bone wearily exhausted. A true mental/physical/emotional deep exhaustion that I have never felt before. She got me thinking though so this morning I did a google search on exhaustion versus depression and soon gave up on that.
A strong theme I have read here over the years is the long, hard road of this disease and the toll it takes on all of us. Years, where our spouse's needs took priority and where the unpredictable is the predictable. After death and the endless death paperwork and meetings are done it is no wonder we fall into severe exhaustion. Our bodies have held it together for us and now say enough, rest. I can only speak for me.
I had all kinds of plans for gardening this summer and did some but seem to have come to a halt. Thanks to all of you helping me realize this is normal and I don't have to run to a doctor for endless tests and diagnoses.
I lay there in bed listening to the rain. I don't remember my dreams much these days but I knew it was just a normal dream I woke up from. I had the windows in the next room cracked open and could hear the morning birds in this first light. I saw Dianne in her photo standing up on the highboy and realized I don't react because she is gone but she still belongs so everything is as it is. The Dianne parts have become and remain peaceful at last.
I know I wrote myself into a part I made up, which is someone strong and resolute but with a kind heart who leads the rabble out of the wilderness. Kick grief as a hobby, I said. I made that up. I did do it though. And laying here in my bed I don't know if it worked and I don't really care what worked, I have no medical degrees or experience and couldn't possibly know what I'm doing.
"You're being re-born." said my bored, know-it-all voice and changed that to 'being re-forged'. I try to bring up some old hurts and realize I don't care enough to. Everything has changed I know but I don't know how or why. Does it matter?
Instead I thought about George and why I'm doing this. I feel the pull but I feared that one day he would not answer. I'm listening right now to the music I'm going to give him next. I realized this morning as I lay in bed that I follow what I feel and think and that is the way of life. What is and is not are the consequences of living - and fear of that shouldn't be it's own barrier. Easier said than done.
I reminded myself instead that I got everything done and my leg has healed. I have a working solution for the driver's license, but I'm on vacation from any concerns until the 23rd. I made that up too, but I'm sticking with that too. I'm not allowed to think about anything I have to face because I just did a bunch of them and no date is pressing before then.
I wondered what it would be like if I was in struggles with my daughter. It would be very upsetting. I know that I have neither the actual belonging to such family nor the struggles that can come with that. It's one reason why I feel this peaceful and also this alone. And for the very first time - but not lonely.
.....
I think you start by making it a very strong point that this is not the normal you and there are very solid reasons why. I would list them. Include depression because you have it. Summarize the world of pain and hurts you went through. Add grief and shock. Those are the reasons why this all feels like this.
Weld into that the fact that all those bad things ended - but you're not going to catch up for a while and instead what you need is some healing and recovery time.
Put in the last piece. When you're feeling more normal you will know that and time alone is on your side. Every little thing you do like stop worrying about not planting the garden and instead authorize yourself to enjoy the garden when you're ready, helps. In the meantime you have to tie this plan together.
You are now your mother. Be your mother and look at you. You don't need more information. Patient nurturing. Even I know that (because I got that) and I know the difference between blah blah blah while the bombs go off - and actually taking that job on.
Personally I think wanting to be a mother means you're at least partially insane. Although I quite liked being on the other end of that patient, nurturing, support and love. It may be time to get more in touch with ourselves - or at least leave a marker. RIght Darth?
Wolf 1: "Somebody get me out of here!" Wolf 2: "We are. It takes time." Wolf 1: "What??? How long?" Wolf 2: "Nobody knows. A couple of years anyway." Wolf 1: "I want to be somebody else then!" Wolf 2: "Doesn't work that way. Here, have a sandwich."
Huge thank you Wolf. I am printing your last post so I can put it in my journal.
I am grateful to all of you here further along with widow/widower journey. Thank you for your supportive hands, arms, and thoughts as I stumble along this new path.
Wolf, there is always something in what you write that jumps out at me. Today it was "being re-forged' which is so very apt and that our spouses still "belong." Stay in that beam of sunshine when you can and thank you for your words.
Katherinecs*, the exhaustion following the death is very real. It includes not only physical but also social, mental, emotional and even financial in some cases. One of the difficult things for me is that very few people understand. I remember telling my sister before the holidays that I was not up to a big celebration and she was positively horrified that we might not have a "party" on Christmas Eve. I got through it by not setting big expectations. That helped. I had glimpses of normality at about 8 months but they were few and far between. The fact that neither my sister or mother "get it" is hard. My father died 5 years ago of vascular dementia but she tells me that she "never went through what I am" which just goes to show that no two people are the same when it comes to grief. One thing that helped me was attending a 6-week bearevement group thru hospice and another one through my church. It helped to break the feeling of isolation but in the beginning I was not ready for such a group. It may help when you are ready.
I'm the only one I know who wants to do the things I want to do. When I spend time with friends, it's to go for a visit or go to some event together or go to their cottage. Those were all challenges this last decade but I no longer know why. Dianne is still dead, Dianne still had Alzheimer's, I'm still alone - but 'facing' feels like it's disappeared and ordinary stuff feels like ordinary stuff.
I'm not ready to declare that yet; but, I can feel it's true. Just like this particular day I can't see a single cloud horizon to horizon. I can get pro's to come to my door, give me driving lessons to make sure I'm ready, take me to the tests - and I will happily pay them. It's way less than I guessed anyway. That's my biggest problem in life right now. Or it will be after I come back from my 'vacation' (time off after getting lots done).
I'll know how true this is over the next month. My job was always to try and help that along but no one tells you how to do that. My thoughts were always protect first (be serious about the reality I'm actually in) and push second (no on can help me like I can). I thought like that because I was recovering from the effects of what we went through. That reality has dominated my world for a long time.
I will refer to this post a month or so from now when enough time is on the clock to be confident. I treat healing as a serious thing where I answer to no one but myself because I am in charge of my own healing by the fact that I'm an adult and accepted I needed help.
Thinking fondly of you. Miss you so much it hurts. Don't want to live without you. Those are three very different feelings we might find expressed on greeting cards. I moved backwards through them. There was a time I thought of running the car into a bridge pillar at 130 mph and end our suffering. I even discussed the most effective way with my suicide friend. I couldn't because it was either murder or abandoning her (both or one), I spent most of those years realizing she was going to die and I was going to be alone and my reaction was so severe, I would shudder and look away.
I have only three states: all in, all out, or looking for an exit. My entire meaning was enjoined with Dianne. I have no regrets doing that or grovelling for my own end when that was being taken away. I broke that idiom not when I put her into a home; but, some months afterwards where I only went to see her to do what I must. The resident thread was never intended by me as a sticky. It was when I started wanting to save myself from the disease that had me thoroughly in it's clutches. In my view the resident thread and the journeys thread are zero different. One struck a chord, the other did not. Both were identical documentation of current struggle.
Now I am here, where I said I would not be, but where the topic is not Alzheimer's or dementia. It is widowerhood. So now I usurp/contribute here - the last period of the journey through a very sorry period filled with the hardest things of my life, the most hurtful things of my life, the most meaningful things of my life, and the most growth in my life. What should I do with this?
I have no basis for anything. I can't tell whether I'm just like this and was always going to come out something like this - or whether I actually did help myself a lot, a little, or hardly at all. I was always going to bottle up about Dianne. Kicking grief was my way of reminding myself that I wasn't actually sorry about being alive - I was just still in a bad, if different, state. I was genuinely angry when Dianne passed and I looked ahead into yet another nightmare. I GAVE ALREADY! I screamed and refused to play. I'm as suprised as anyone that somehow I didn't feel sorry for myself that I had miles to go.
I gave 'Dianne' up a long time ago. I had to because she had left the building. I knew it was her but it was her personality and her reality I fell in love with - not her body. I took care of her and I watched over her. That was all that was on offer the last few years of her so called life then. When she was finally at rest I had lived for almost seven years knowing she was going to go. A normal experience with grief was never on offer.
"Don't cry for me Argentina". We went to that together. "It's only life, and this too, shall pass" I would add. That's not what I said to her though. When I put the lapis lazuli urn on the wood commode I'd prepared with dry flowers and pictures of her friends,what is said was "now me".
I may have been crying. I don't remember. I was in shock and in the throes of grief I was trying to deny. My life had been torture for years anyway and whatever else, she was now safe and it was time to start getting out of here - this sick place focused on dying and death. Time to fight for life.
I'm one of the older children on the planet. I think people and their ideas about what's going on are largely ridiculous. Sorry, but I see this as a wildly self-serving free-for-all dictated more by random events than anyone's plan (physics and mathematics aside). I love all of it but not in a serious way.
My poor friend bounces around with psychiatrists and medications and therapies because he can't stop believing that how he feels is really important. It's not. Live with how you feel. Change now. He never will because he can't accept what happened because he can't accept that he did what he did - he just wants to feel better and he wants you to get that done. (he lost a job he loved by being too aggressive, then he withdrew from the business world because it hurt too much - that's the whole story in a nutshell)
I have to open my heart sincerely to Dianne not being here. Not an easy journey but a much longer and less reliable one done reluctantly. It's a journey I'm still on in which I have no concerns about arriving anywhere. The orchestra of memories is keen to play and the baton is in my hand.
Without saying whether we did or didn't, we talked about spanking one night. We had seen a movie which I forget which had something about that in it. We never put on batman costumes or anything, but we were a bit adventurous. Dianne got a glass of wine while we talked which was rare. People give off 'tells' everywhere. I can write scenes in a hurry and I painted one where I used the word 'daddy'. Dianne looked at me incredulously. "I want to be spanked by my father??" she scoffed. "Not him, Brad Pitt, guy who is hot 'daddy'." She sat back and listened to me weave a quite harelquin tale. We were well in our fourties and we were just playing, but I can tell you there are a pair of black stilettos in the bottom of her otherwise virtually empty closet - and they are never going anywhere.
What was I talking about? Oh yes, the orchestra of memories is keen to play and the baton is in my hand. And that's great, but not my life now. In fact I think I might describe my life these days, as the memories of what was being overtaken by the things here now. I'm thinking neutral has arrived.
Why post this? To push my fortune in people's faces? No. I'm aware of that. But to remain silent is to offer nothing to a major life event. No. I leave my truth.
It's maddening that I have absolutely nothing to learn from. This is an idiotic planet.
I went out this morning to get my paper and the neighbour was working on his shed. He asked me how I was and I came over and told him the truth. What I said was:
"Even though I know I'm coming out of this and feeling better, the amount I can see how screwed up and weird I've become is greater and even more real. I'm a mess." He knows that already because when I went to ask him if he could help me two weeks ago, I told him everything without mincing words. Basically I said I was screwed up and could really use some help facing the situation I found myself in. He made sure I understood he was going to take me and we could use my car. He's reinforced that several times.
I'm not sure he's ever going to understand what that means to me. When I went over there two weeks ago, it was a major step for me which I completely didn't understand. I went over willing to offer him a few hundred dollars (he works at night) to help. Even then I had no hopes of getting help because I graduated from the school of get no help when you really need it. I'm telling you PTSD (who cares what you call it?) and garbage like that is around.
I know he gets things so I just laid it out as I said above and he jumped right in because he actually heard that he needed to reach me to make sure I understood it was no problem for him.
I do that. I've driven my other neighbours to the hospital and picked them up a couple of times. That has nothing to do with healing inside enough to get these things like a normal human being might. It's learning these things that shows me how far I have yet to come to reach a true balanced, neutral, normal. I can see it all around me in how I go through my days.
I remind myself regularly that I've been through a gauntlet of pain that doctors agree is serious. I don't hang out there because it's unhealthy to dwell on bad stuff that happened in your life. Learn from it, accept it, reject it, modify it - but don't move in. That's why I have to keep reminding myself. I'm leaving the area of my life that was truly 'everything alzheimers' because I won't heal if I don't and yet I have to knock off pieces of this ball-and-chain off as I can.
I know some parts of this quite well. There's victimhood vs authority as an outlook. Break the prisoner was a fun game to play for a decade but it has a number of costs. And those aren't listed anywhere because everyone's costs are unique in their blend.
I talked about what a role self authorization has played for me. It's been critical in smashing through numerous things. I'm just starting to learn that this is a complex thing which has many aspects. Authorizing myself to be willing to be let down by my neighbour for example. It took me days of mulling on my problem to even conceive that my neighbours might pitch in and help (even while I was doing it for them - not entitled you see).
I have to manage myself because I want to have his baby. His response and the reality of it helped me take a step closer to feeling that normality of things - which is an entire topic none of us would have considered and is reserved for those who have been pushed sufficiently out of their normal outlook and feelings that they lost those.
I think you have to look around you at the people you know and try and separate what they're facing or how they say things or whatever they're doing - from how hard it is for them to be themselves and act like themselves. That part of things isn't a problem for normal people. We know their song sheet. The nuances and peculiarities that make up a personality. You may not be able to tell a perfect C when you hear it, but you can tell when the person is off and sounds different.
There was a you that had perfect pitch in it's 'you-ness' which evolved over time with all the experiences. That perfect pitch went into the dumpster long ago. It got bounced around and run over by half the cars in town it was in the gutter so long. It got hurt, it got abused, it got stretched, it got shocked, and on and on in the bumps in that very long night.
So, today my neighbour rolled his eyes and said "you've been through a lot" meaning I should try and understand that. He's measuring stuff while he's talking. I'm looking at him like I've just discovered a new species. Empathetic Man. Rising out of the tar sands of Kitchener with his hammer and saw and understanding. "You should build something" he advised. "I'm painting", I answered gesturing through my house up into my room in the back. "I mean outside" he pointed out. Right. Outside.
I gave myself until the end of the Raptors NBA season. We had a shot but Cleveland was too strong by half. Now I have to face this last hurdle before I go back to my room. I'll get the license resolved. I hate it but it's in my sights. The issue I'm beginning to see is that when one says it's time to stop being beaten up, however enjoyable that might have been, then it's time somewhere to start having a bit of fun - and dour, morose, imprisoned, fragile attitudes aren't particularly helpful.
So, I'm giving this speech about self authorization, and life, and everything and this person interrupts asking a question. "Yes, but what do you actually mean? How does any of this actually work?" I hate that. If I can't answer that question then what the heck am I blathering about? Why don't I just yell for help? Oh wait, I did. My God, I've been so strange for so long it feels strange to feel normal - even for five minutes.
....
One of the private jokes that made up our world was 'silent scream tiny face'. One of us would say it and we both would do it. It was odd what things we picked up and what things we didn't. There didn't seem to be a rhyme or reason to it. We went to a movie in 1969, the year we met, and it became part of us. I can see myself in the nursing home doing it and cackling while the minimum wage help smiles that old Wolf is off in his little world again. With a bit of luck I'll have them in elvis suits dancing like the rockettes and I still won't regret anything except that time flies by like a speedometer with tourette's syndrome. As usual, no brochure, no complaint department. Oh well.
"I went to ask him if he could help me two weeks ago, I told him everything without mincing words. Basically I said I was screwed up and could really use some help facing the situation I found myself in."
We often complain that other people don't "get it," but you've reminded us that they might "get it" if we just explain it to them. This guy sounds like the kind of friend we could all use.
Hang in there, Wolf. There are some simple things that might sound silly, but that I've never done before, and am finding are very helpful. I try to do one simple pencil sketch each day. I just recently started that--laughable results--but you are a real artist, so it may be a means of helping you through the feelings. Also just going Zen can be good--getting the emails for when the International Space Station is going over your location, and then just going outside and sitting in a chair and watching the sky until the friendly little white light goes over is very therapeutic. I have no idea why. And a third thing I do that literally takes a minute or so is to memorize poetry, one line each day until you can say the poem. I am doing The Lake Isle of Innisfree, by Yeats. I have a nice illustrated print of that poem that hangs in the bathroom, so it is right in front of my eyes as I brush my teeth or get out of the shower. It is almost like I am really at Innisfree, alone with nature in the "bee-loud glade." So far I have the first verse memorized, and I love saying it to myself. Another thing is to just get off the Internet and turn off the computer. I am feeling happier and more grounded by trying to do "real" things instead of virtual. I don't know why, but I do find that too much time cruising around online makes me jumpy and dissatisfied somehow. I go online first thing in the morning with my coffee to check the news and the weather and a couple sites that I like...then shut it off until evening, when Dog and I sit on the couch and watch a couple hours of something light on Netflix or Amazon Prime. And long walks are good, too, if you have somewhere nearby that is pleasant for walking.
Unauthorized Afterwards Survival Brochure For Beginners, version 1.0
....
Here's what the announcer should be shouting as you arrive:
"Attention! You will be shot into the afterwards out of a cannon head first. Hope you brought a crash helmet! Don't worry about the pain you feel. You will be going into shock anyway nineteen times out of twenty! We hope you have a pleasant stay. Thank you for flying Caregiver Airlines."
When you get home from the funeral, you will be surrounded by the loving support of your friends and family. Or you could be like me where a couple of people waved but that pretty much emptied the support on offer.
In which case a brief outline of some things to consider might be helpful.
First considerations might include legal issues, money issues, decision issues, and last as always, the mess that is you.
Legal issues - each government has requirements for notification of changes in status resulting from a death. Each government also has it's own requirements for documentation. Central to documentation will be death certificates. Get at least a dozen originals.
Despite your state, it is wise to review the changes such as from pensions or other entitlements, changes of ownership of assets, changes to the status of debt, and the timing of when notications of those changes should be done in. Property titles and beneficiaries named and even life insurance and vehicles come into play here.
Build a list and separate or flag the important ones. Changing the name on a bill can wait. Notifications that have an outcome are usually considered timely with notification within 30 days. There is no need to face this in the first days. Try to make the first notification you make a less complicated issue if it's on the phone because it will likely be hard to go through.
Try to get through the important list within 60 days. Try to make sure you understand the implications of any choices you might have. Get advice if you're unsure. If it's all too much consider hiring a lawyer to get these things done for you.
Money issues - the passing of our spouse in most cases changes the inflows and outflows that were running before. In some cases there are lump sums such as insurance. It would be wise to put together the new picture of your income, expenses, and assets. That doesn't have to be done in the first three months at least in most cases. All that matters in the first few months is that current things are attended to.
Even if in the medium term money will become an issue, I advise that it is inhumane to make ourselves face these things in the first few months unless absolutely necessary. I believe that at least the shock of this will have likely passed before then. People think more clearly when they're not in shock even if they are still deeply grieving.
Decision issues - don't. Making decisions in the absolute worst year you are likely to experience in your life is not wise. If you have to then you do it. Otherwise, put all decisions off for at least a month and I advise putting them off for the entire first year. The odds are high that you will feel and see things differently by your second year.
Last as always, the mess that is you - where you have my sincere sympathies. Understand that eventually there will be a you coming out of this storm. Start understanding the disease ended and your work there is done. Try and find any parts of your caregiving skills that you can use for yourself. I'll give you one - patience. You're riding out a storm. Patience.
You move their things when you're ready. Don't let anyone push you. If help is offered and that seems right then accept the help. Clothes in a closet or toilettries in the bathroom aren't actually bothering anyone unless they are. Doing this task will set off reactions. Doing this task the following year is nowhere near as hard.
Authorize yourself. You may never have thought like that. Authorize yourself to care about yourself. You have that skill in spades. Use it on yourself and if you don't know how, start learning now. Trust me. Start learning as soon as you can to know and help yourself more.