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About Gwenivere

  • Rank
    Advanced Member
  • Birthday 11/25/1955

Previous Fields

  • Your relationship to the individual who died
  • Date of Death
    October 29, 2014
  • Name/Location of Hospice if they were involved:
    Aegis Dementia Care, Seattle WA

Profile Information

  • Your gender
  • Location (city, state)
    Seattle, WA
  • Interests
    Nursing home volunteer. Reading. Dogs. Philosophy.

Recent Profile Visitors

4,802 profile views
  1. I had to use 6 rehab pillows at night to sleep for my old bones. If anyone has been hospitalized, you know they are like pancakes and plastic so the pillowcases slip off. You don’t want to move because you have to start all over again. Why they put white blinds up I’ll never understand. Had to get a sleep mask. You can jump out of bed, Dee? I’m still crawling. 🤪
  2. MThanks everyone. It hits me everyday the rituals to get going and throughout the day that never existed before. I just got up, got dressed and went on with my day. Now it’s compression socks, knee supports, meds,etc. Undressing is getting that stuff off, a pain pill, aspercreme and whatever chores before I can sit down from the pain. Going to sleep? Oh! The rituals with pillows so bones aren’t touching and hips positioned for the least impact of hours of inactivity. Where did simplicity go? Bending over, hard vs. soft chairs, getting in and out of the car. Bringing things in the house now including portable oxygen that has to be recharged. Walkers in the house with the oxygen generator. Pill bottles galore. I’m suddenly old it feels. My mind forgets or hopes when I stand up it won’t hurt. Filling pill boxes for the week really brings home the feeling of being a part of the invisible generation. Having to ask for help on what were simple tasks sucks. The worst? Showers that felt good, not an exercise in preparing for possible falls and what I consider a PT session and the aides say it is. I’m really turning into that 'get off my lawn' person from frustration. Golden years. Whoever thought of that saying should be shot! 🤨
  3. I definitely have gained a huge empathy now that I have experienced what I only observed before. I was never unsympathetic, but I knew I could get up and walk away without pain, didn’t feel the stranglehold of depression, didn’t need oxygen strapped to my face to survive. Even seeing that in others I thought it could never happen to me. When it did I felt targeted, like I was somehow more special than others. I’ve certainly been humbled from that kind of thinking. Selfishly, I want to go back. Who wouldn’t want to leave all this inner and outer pain? But since that isn’t an option, I can try and use the understanding I now have. The thing I have to be careful about is comparison. I am worse than some,better than others, tho I can’t think of who beyond residents at the nursing home. Mentally I don’t know anyone as low as I am. I called a crisis help line yesterday because I had no one to talk to I felt would understand. I have my counselors, but I needed someone immediately. This is a daily thing and having had the 5 week time to interact with others when I was in facilities showed me how alone my existence is that I never saw before. It was another 'why me?' experience. One very not needed to keep walking this road alone. I don’t see a future that has any pluses. I know people older than me living alone, but they have people of great importance in their lives to fuel them. I do the solitary things they do like taxes, but I’m not sorting pictures to pass along or planning get togethers to refill my souls well. Don’t have anyone that truly knows me to contemplate my future options as I lose more abilities. There is a part of me that will never forgive Steve for leaving me. It’s a taboo thing to say, but I feel it. He didn’t choose it, but emotions aren’t logical. I get so angry that he can’t help me with the double load of responsibilities I have now. I get angry with the dogs for stepping on my oxygen tubing. I take it way too personally if someone cancels dropping by which is rare anyone does. His death was like a trial and I lost. Convicted and serving my sentence. And I say, honestly, I am innocent. To not sound totally embittered, I know Steve did not want this to happen. He would totally understand my anger, sadness and feeling I can’t go on without him. He wouldn’t be telling me there is purpose, a higher meaning or something I was meant to accomplish. He knew this was a losing roll of the dice with nature, nothing more. He stood trial and lost too. Is he in a better place or exist at all, I don’t know. All I know is it’s over for him and I envy him that. He told me he would not want to be the one left behind. He knew this would be hell and said he wouldn’t be far behind me. Knowing him, it would have been true. Maybe we just loved each other too much. No, no maybe, we did. I loved our deep relationship but perhaps a more conventional one would have been easier. I know some widows that have gone on tho they do have friend and family connections. Mine dried up. The first year I was saved by mine. They are gone now. It wouldn’t be enough now. After 5 years and who knows how many more, only he will do. I knew I couldn’t count on others but I never thought he’d be the one to cause me pain I never knew existed. Yet I love him more everyday. It’s counterproductive but the way it is.
  4. What a tragic loss so close to Susie's and your just having spoken to him. My thoughts are with you as you have to face another void in your heart.
  5. The appointment went OK. I got my RX's refilled and listened closely to gather info he needs to hear to lighten the stress for me. There was talk of increasing one med, decreasing another that disturbed me. He said I seemed better than I was last September as he told me how many times I smiled. He wants me depression free. It’s a nice goal. Don’t know if that is attainable. I knew I couldn’t tell him how I really feel and have him understand. No one could that hadn’t gone thru the losses we have and then go thru being sent away for 5 weeks to be dumped back in a life now so clear how alone one can be. I tried to lighten the day a bit, but little worked out. A store was sold out on a special, where I wanted to get dinner only had one employee making fast food with a half hour wait. I didn’t realize how much I would miss Steve’s buddy not coming by. I’m amazed how much I almost miss rehab because of human contact. Beside it would have been great not to have gotten sick, I wouldn’t have been so aware of just how deep this loneliness cuts. When having to do anything feels like massive work and you can’t find a single thing that feels good except sleep, even if it hurts. I so miss being touched. Was it in one of the forums or topics here that grief was defined as love that can’t be given to that someone anymore? That is so very true. That wonderful feeling now is killing me slowly every day. I know the trigger was talking to my rehab roomie as we have been talking about our personal histories. Her husband is remarried and I talk about Steve so it hangs over my whole night and I know it will be going to bed and start this all over again. I seem to have been forgotten by PT and OT. Only heard from a social worker for next week. She doesn’t have anything to offer. I hate being invisible in the world. Sorry, so tired and down......I just babble. I hope everyone is doing as OK as possible.
  6. Problem is I tried getting a shrink about a year ago and all were either booked to the gills, not accepting new patients or a couple didn’t like my meds. I’m not going to drain my financial resources finding out from others, plus the long wait. It would be pricey to find out they wouldn’t prescribe. So, I feel stuck and still have to meet with the guy I have today. See what his plan is. He says he’s going to prescribe, but I don’t know if it will be with refills or a short leash. Most shrinks give you 6 months. I hope that is the case as I have so many other things to contend with. I thought I would have some company tonight, but the guy wants to work his exercise program. Maybe in 2 weeks to help me with some chores. Been on the phone constantly with insurance and now off to the shrink. Then picking up something I don’t have to cook. Have to book an appointment with a vascular doc as my legs are back to swelling and painful. And this shrink wonders why I am so depressed. This ought to be interesting as well as challenging.
  7. I don’t know what is going on, but I seem to have moved to this extreme fatigue not long after I get up, which takes massive effort. Then I take my panic meds and I cash barely stay awake. This is the 2nd day. I’m used to being tired in recovery from my hospital stay, but not like this. I finally made it to my grief counselor and was looking down and almost fell asleep. I was very nervous driving. I felt more alert when I woke up for the bathroom 4 hours after I went to bed. The walking pain is relentless so I’m guessing that plays a part. Mentally I am so aware of being without Steve now. I have an appointment with my shrink tomorrow I have to keep and wish he could drive me. I know there are cabs and Uber, but I’m not comfortable taking on a new experience on top of seeing this doc I know is stressing me out. I had been doing a lot since getting home and blame myself for more pain. I’m not patient in this rest thing, plus they tell me to keep moving. No one has an answer for the pain beyond injections or meds I’ve tried that make me dizzy. I keep running into more days with so little to do as I get ahead of myself to fill the long hours. Last week I couldn’t get away from med people coming by. Now there is nothing. I want to sleep, but I don’t think it would do much good and it’s not something I do in the afternoon. I want to cry and it won’t happen unless I can talk with someone. Maybe a little, but not the releasing the dam that is really needed. I have no place to go today that is needed. No nterest in anything. I watch people walking by with their dogs or coffee and envy them. They aren’t tied to pain and oxygen. Even if they do have problems, they have the motivation to get out a bit. I have it, but it takes so much preparing. That 35 days away really messed me up. Right on top of the most emotional holiday season for 3 months. This shrink said to me.....you are still massively depressed. Well, duh! I just hope I can make it thru an inquisition as that it the way he is. I’ve been advised to tell him how I feel about our relationship but worried he might cut me off, tho ethicality that would be wrong. Going out for a bit. Too late to stop at Foss. A nurse just called to check in on me and was a little help after throwing out the same old suggestions for contact like church, book clubs, library. She was working from home and shared she has to get out too as the 4 walls close in. Keep talking with people that seem to have it far more together. babble over. As always, one person could make this bearable and it’s another day to accept that will not happen.
  8. I know some people have peaceful deaths, but all in all, rhetorically asking, why does life have to end so hard for so many. Pain physically and mentally, loss of independence, dignity, treatments that make things worse. I get worn out bodies. We don’t ask to be born. We just are and at the end stuck. Plus the fear for many. Other animals just go with it. They don’t attach a meaning to it. It just is. I wish we could just say 'I’m done'. A peaceful exit. Hesitant to post this, but on my mind reading about so many problems and living mine.
  9. I don’t know how settled you and your partner were. Having been in our house for over 40 years, it’s daunting to think about downsizing. There isn’t that much to give away that was strictly Steve’s. The rest is shared living space so much would have to go. I guess I would adapt to a smaller place, but I would miss 'home'. I couldn’t do a roommate either. My schedule is not close to normal and I don’t want someone in here who isn’t a well established friend, the only roommates I ever had. I guess money I spent feeding us and he spent on 'toys' kinda evens out for having to hire people to do what I can’t. I’m not even sure being somewhere smaller would help me emotionally. It would be another change to hammer home how drastically life has taken a turn down a path I never thought of. I already say 'how did I get here?' as it is. When I was in the hospital, the ONLY thing I liked was I didn’t have to make or clean up meals. Just eat and be done with it. Thank gawd for microwaves and pizzas. I have lots of healthy food to easily cook, but too tuckered by recovery from recovery. Very much a personal decision, Kieron. Age plays a big factor too for Dee, Kay, Marg and me. Roots planted deep. Bodies breaking down, etc. That you are thinking about it says, to me, it may help because when I do, I get very stressed out. It will come soon enough.
  10. I wasn’t referring to you, Kay, about the getting used to it phrase. I was talking outsiders. People’s that haven’t lost anyone and think 5 years is more than sufficient for deep grief. I like your definition of new normal as I have been resisting that term, but it really is spot on to describe the changes, loneliness and pain. I can’t deny this is my normal life now. What is so hard is there is no laughter, lighthearted feelings, things I look forward to other than sleep, or get any true pleasure from. It’s so darned routine also. There was a routine when we were together, but flexibility. I have too much of that so need almost a confirmed day. The only thing that changes are places I go to get out of this isolation. I was reading that for each day in a hospital it takes a week to recover. I was in 35. So this last week I’ve recovered a day. I actually feel worse than when I went in as I have so much to do while feeling weak. I have to tend to the dogs, make and clean up meals, pick up general messes. If Steve were here it would be so much easier, obviously. I’d also be eating healthier food. seems I live on sandwiches and chips. I was talking to my roommate from rehab and she’s in the same boat. A buddy in Indianapolis just had a knee replaced, but his wife is taking good care of him. He’s getting PT. I have yet to get that. Not even sure I care anymore. I’ve had a chance to reassess my situation and not sure I want to keep it. Can’t really add anything physical and see what it is like without my volunteering. It’s as I feared. Empty and cold. My elder dog is slowing down so I add that to more loss coming. Still searching for how to make life worth it looking down the road.
  11. I do have a glass of wine before bed. For an hour or so I feel relaxed. I went 6 weeks without in the facilities no problem. I didn’t notice it helped my sleep to skip it. That is when I write my list for the next day feeling I can accomplish it without much trouble. Then reality hits and like today, just a short visit with a gal, light grocery shopping, unloading, changing and feeding the kids have me wiped out. Shower again unknown to accomplish. PT just called and was going to come out at 10am Monday. I coldly reminded them I have told EVERYONE I don’t do anything before 1pm. I had to live their schedule inside, now they live mine. I’m tired of being pushed around so it’s easier for them. They are supposed to help me, not the other way around. I have some control back now and plan on taking more. I had shut the front gate so Ally could go out front. When I opened it today and came back I could hardly breathe. My oxygen got unplugged and luckily I found it. I don’t know what it’s like to not be on a leash any more. That makes everything worse. I’ve sat a few times or gone down the hall and loved the freedom. I still find it ironic that I quit smoking over a year ago and now this. And it’s not even the smoking that is doing it. The bronchiectasis is genetic. Just decided to rear it’s head 2 years ago. No cure. Best I can hope for is back to baseline when I didn’t need it all the time. I’ll take it if I can get there. Also ironic that this happened when I had rid the house of all the cancer crap of Steves. Nothing like the hum of a generator to make the place feel homey. Not. marg, Benadryl and Dramamine have been used forever for sleep because of the sedating side effect. They are both considered safe. I tried a Benadryl once and it knocked me out combined with Xanax. Never again. I do believe you are right, REM is when we dream. Our bodies get paralyzed so we don’t act them out. Tho some people sleep walk. I have in the past and woke up completely dressed with no memory of it. Freaked me out! Good thing I didn’t try and drive. I’d hide the keys during that phase.
  12. Maybe that is the benchmark of 5. It becomes so real and we do notice things that are theirs but have less meaning. That in itself is so sad, but happens. I just closed our PO Box of 20 years, but I kept the keys. Just had to. There is very little more of his I could get rid of. It’s the idea maybe. I still haven’t done anything to his bathroom but keep it clean. Not ready and not sure it is even necessary. I onlybgo in there to use the scale. Only other things are his cards, to and from me and I have no plans of ever going thru those ever. It’s the mental AH HA time this is forever, tho we thought we knew that. As Dee said, we’re now that much older and truly alone. We’d still be older, but facing that with our partner would so help. Just to split chores even. I hate this medic athing alert button that replaces his help for safety. Off to get groceries which will wipe me out. I so hate taking breaks from what once was a fun activity. Even meeting a friend for a quick chat first will be draining. I still keep asking why.
  13. Another term I hate is 'getting used to it'. Hear that a lot and it often feels invalidating. Why I hesitate to say. It’s like you get a pass for maybe 2 years.
  14. Can’t combine a sleeping pill with Xanax and clonopin. I sleep, but it is always difficult about an hour before I have to get up because I know I have to get up. Got myself all messed up this morning turning off the alarm instead of snoozing it so had to turn on my back up for another 10 minutes. Really makes me wonder why I keep doing it. It’s just another day of misery.
  15. I don’t know what it is about 5 years. I thought it was just me, but now Brat and George have felt it. It’s very deep. The harder part is when someone asks, it seems forever to them so makes no sense we could still feel this bad. Maybe because they can’t look at it in true perspective. We’ve already had to miss 5 years without them and that is all there is ahead. They can’t comprehnd the word never. I could live with never having another cheeseburger in my life. This is so hard to accept, like that even needed to be said. George, I’ve had visions of Steve at his worst and they chill me to the core. There are some things we wish we could unsee as they serve no purpose but to twist a horrendous knife. You are in my thoughts today. Always are.
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