Wolf, You're right. Caring for my husband – visiting him and attending to issues that come up - is my job and everything else is just passing time. Also, even though he is fairly content and easy to deal with, I can see he is passing into a different stage where he needs more help. He clearly does not connect with his surroundings, it's harder to take him out of the unit, and he walks very tentatively. He's moving father away from me and all I can do is watch. But it's still my most important job.
I wore myself out on Saturday working in the yard - it's my idea of fun. Then yesterday, I worked in the yard in the morning, went to an 80th b-day party in the afternoon, and then visited my husband. I was so tired that I fell asleep as soon as I got home, even though it was only 5:30. Fortunately, I did not sleep long and was able to squeeze some more gardening in before it got dark. One of the nice things about my new hobby (Brexit) is the humor that it is generating. This morning someone sent me an article from buzzfeed.com called "This Completely Bats---t Week in British Politics, Explained for Americans." I can't remember when I laughed so hard!
Elizabeth, that's great that your neighbors are inviting you over for a casual visit. I can just picture Bandit nosing around their yard while you visited.
Myrtle, learning to pass the time is another way of saying getting interested in things. Nobody asks your motivation to take out a library book and nobody asks that in our personal interests either. I hate football and love basketball. I think Brexit is fascinating and will continue to be fascinating. I read an article about how it all started with the Treaty of Paris 1951, which was actually left blank when signed to be filled in later.
France was fine with dominating europe but it was shrill about Germany being bigger. The original idea was to put all mining from the Ruhr and other German areas under French control in perpetuity. That became a general consensus to work together more but was left blank on the day it was signed. That has been added to ever since.
The idea was to eventually harmonize into a single entity like the USA but they all speak different languages and all have differences in their laws and their governments. That was never going to work through stealth in the way Brussels has gone about it.
I think Britain is starting to have a massive hangover that is going to become a real throbber. Now Farage has bailed too. I think Scotland will leave and become part of the EU. And I think it's mostly because the Polish came in droves taking jobs nobody wanted to do anyway.
The first sign that decay is at hand, also in my opinion, is when you can't get a cleaning lady or a maid or a nanny without bringing them in from poor countries. That was true in Rome and it is true today.
At any rate, this is going to unfold for years to come.
Wolf and Elizabeth, Yes, they say that Scotland will likely break away from the rest of the UK, although I think there has to be a vote on that. Some people say Northern Ireland may go, too. Deciding the Brexit issue via a referendum does not appear to be a well thought-out move. The humorous bussfeed article I mentioned earlier was actually quite informative. It explained that since GB does not have a written constitution, it did not have to pass a constitutional amendment to leave the EU. But I'm not sure whether Parliament has to vote on this before giving the EU formal notice.
You're right, elizabeth, all the activities on Sunday were way to much for me and I do have a tendency to work until I am exhausted. I need to scale back. Too bad you can't get the book from inter-library loan. Kunstler is really a social and environmental critic and the books in his fictional "World Made by Hand" series are kind of uneven. I think the first one best conveys the experience of truly living off the grid, although "The Witch of Hebron" is very interesting, too.
Elizabeth, I’ve ordered the book from Amazon … got into a rut (daughter says I’m OCD), but I'm trying to get everything in order in my apartment in order to put life into perspective, and try to move on, positively. Our lives, when Rene was here, was so organized and worked. He was so precise!
Daughter has many health problems, and I am supporting that (while learning from you!) It is like extended caregiving all over, just not as intense. But, lessons learned, and we try to move on positively.
Elizabeth, please know that you and your posts have been a ‘huge learning curve’ for many of us who are struggling with the loss of our loved one, and trying to move on. I am trying to remain positive, knowing Rene would absolutely want that.
It is getting better … much of which I contribute to you and your willingness to share and advise.
Always happy to read your emails, Elizabeth. As I read it, you are steadily climbing out of the depths of sadness and loss, and that is so heartening.
I love being alone, too. The brain fog is lifting a bit. Have to learn to just stick with a few important things. When Rene was here it was totally different. He’s always in the back of my mind, and I miss him so much. I think that I could have dealt with his passing much easier if that video hadn’t been taken. It tore my heart to pieces to think that he was put in a humiliating position he would never have okayed, nor would I. His dignity and pride and privacy were so important to him. Anyway, I am trying to come to peace about it, knowing no one can hurt or demean him anymore.
Just want to say that I am very happy that things are progressing, Elizabeth. Thank you for sharing your progress.
Hi marg78*, I saw your comment so I thought I'd pop in to say hi. First, let me remind you that you were successful in exposing the wrong that was done to Rene and thereby letting the public know about the potential for abuse of NH patients in this manner. As for your being able to forgive that video incident, I don’t think that's going to happen, but you might be able to forget it most of the time. People who can’t forgive often say that they can make peace with something by forgetting it and focusing on other things. I have found this true in my own life, although the wrongs that have been done to me were not that serious. BTW, Here’s a joke. (I'm allowed to tell it because I'm Irish.) Q. What do they call it when someone forgets everything but their grudges? A. Irish Alzheimer’s.
Elizabeth, I know that finances are a big part of this so what about going on Trulia an finding out exactly what kind of house or condo you would be able to afford in NY and where? (I know you would probably rent an apartment at first but if you are thinking of buying eventually, you might as well find out now what the reality is.) I have always found that when lifestyle or finances are an issue, specific information helps me to decide. Also, you've mentioned your friend Phyllis but are there also other people with whom you could hang out and go places? Finally, try to imagine what exactly you would miss about the Heartland. Would you miss those things so much it would cause you to regret a move?
P.S. My sister-in-law just called to remind me that I had offered to drive her to tonight's garden tour since she had back surgery a few weeks ago and can't drive too far. So I'm being forced out of my cocoon again. She didn't go to the family reunion either and said she completely understood why I didn't go since I would just have to answer difficult questions about how my husband is. So there are people who do understand.
You are one of a kind … I’m sure you have been told this by your friends before. I love the way you think and your common-sense approach to everything…. and always, your kindness and help to others. Thank you.
I follow your comments about your husband, and think he is a very fortunate man. This was such a hard journey, but I am thankful that I could be there for Rene when he needed me.
Enjoy your shack ... thinking of you in there makes me smile.
Elizabeth, you are percolating .... When you are talking about Kingston, is that the US or Canada? Your posts are never boring. So much involved in decision-making ...
Here in Canada we have had many articles in the newspapers and on TV lately about discrimination because of Donald Trump’s comments about the Khan family. The photo of the Khan family’s son brought up so many memories for me. Their son could have been a brother to one of the kindest people I have ever met.
We moved in 2011 to an apartment in London because I could no longer look after Rene and a house (he had always looked after everything exterior and ‘manly’ while I looked after cooking, laundry, housework, etc.) After Rene was diagnosed with Alzheimer’s, he lost so much besides his confidence and self-esteem. He was afraid to speak, because many times the words would not come out right, or took too long to come out, and he fell a lot. I hated to leave him out of my sight.
In London we joined the Alzheimer’s Society as a couple, and there met a very special person. He was tall and handsome, but most of all, he was so kind. He was paired with Rene to make a Swiss meal and a chocolate dessert (at this point it was the only way I could have gotten Rene to go!) I stayed in the background and watched because it was the first time I had left him alone with someone else because his confidence was gone.
I will forever in my mind hold the picture (and I took some) of the two of them (Rene and Sulayman), cooking. This man could have been a twin brother to the Khan’s son. He almost immediately put Rene at ease, and at play, as they cooked. He was so calm and showed such an interest in Rene’s life, his work and his hobbies, he laughed with him in a way that disarmed Rene, with respect, and at the end of each visit, Rene felt so happy … I will never forget that.
I met Sulayman’s Mom, aunts, nieces and Grandmother, and they were the same. Wonderful, loving, giving people. We were so fortunate to have met Sulayman. He restored, for a while, my husband’s pride, dignity and peace.
Sulayman also volunteered with Autistic Children, the Red Cross and volunteer firefighters. Today he is a researcher in Sweden. He never preached Islam, and was so grateful to Canada for the opportunity to have imigrated here with his family from Afghanistan. When they came they did all the manual labor that was necessary to get started.
When Rene was in LTC, one of the physician residents came to sit with Rene and I on the patio (I always took Rene outside when I could). He had the kindest face, and I told him he looked similar to a friend who had been so good to Rene, and I mentioned Sulayman’s name. He was shocked and pleased, and said “He and my sister always competed for the top marks in their class.”
Just want to say that I hate discrimination, and will be forever grateful to this wonderful man who spent so much time, and gave happiness and confidence to my beloved Rene.
Just wanted to say 'adieu' to all of you wonderful people who contributed to making our lives a little better. I am signing off now ... wishing you all the best in this hard, hard journey.
Wish I had more to offer, but at this stage I don't. God bless all of you in your journey. And remember that your spouses/partners didn't choose this terrible disease, so love them as they would have loved you.
marg78*, If you are saying you are not going to post anymore, let me say I sure will miss you. I do understand that people sometimes decide to stop participating, especially after their spouses have died, and I respect that. (Remember, though, that it's a woman's prerogative to change her mind!) My best to you, Myrtle.
Myrtle, I have come to care deeply for the people here. To me you are folks I can speak with and express feelings that I can't always say to others. I have been helped so much by the affection and advice from all of you.
But, I miss Rene so much that sometimes I feel I am dying, but can't yet because I have other responsibilities; and when I come here and read that you are still in the midst of all the pain, it is even harder. I've said things too about family that can be read by others that I don't wish them to know. Perhaps if I step away I can try to move forward.
Elizabeth, Mary 75, Myrtle, Marche, Jazzy, Cassie and all, thank you for all you've given me. I don't think I could have gotten through this without you. At this point I don't have anything that would help you, but heartfelt care. I wish you all the best as you tend to your loved ones. God bless all of you. I am signing off now.
I feel the same way, Mim. I miss reading Elizabeth's posts - she was so generous in sharing her thoughts and feelings. I worry about her not having people to talk to but I know she is strong and very disciplined, so she will be OK. And of course she has Bandit.
This is not the right thread to post this on but I'll do it anyway. As you may remember, my cat was in the doghouse on account of her poor personal grooming. Well, she redeemed herself last night by catching two mice in the family room. She brought their dead bodies into the bedroom to show me. So I don't care that much about her slovenly habits, although I did make an appointment with the groomer for her to get a mani-pedi, a belly-shave, and a comb-out on Saturday.
I was there two years ago, last year, and today, and even though three bay garage was the same, I was someone else each time. Two years ago I needed an emissions test to get my license plate sticker. Dianne was starting to struggle and the fellow across the street said they were pretty good and they were close so I went. It was a friendly place and when I told them my address they named most people on our court. In fact, people in the back jumped in and mentioned more of them. I was in a daze those days and I remember sitting in the little waiting room right there forever. They had the doors open and you could hear the birds and people walking in and out chattering. I waited what seemed like a long time and when they rang me out I asked about tires and got a tour of the garage showing me why the PIrelli's I asked about were a good choice. I felt drained when I got back to our house.
Last year after Dianne passed away, my very slow leak which made me ask about those tires the previous year started getting worse and I didn't really notice that I was pumping the tire up more and more often. I used my bicycle pump and one day when I wanted to go somewhere I counted the number of pumps - two hundred. I was used to doing insane things to keep going but I suddenly stood up and asked "what the heck are you doing??" and I walked upstairs and found that number and got them to order my tires. So back to three bay garage I went. They were friendly and it only took an hour and I brought a magazine while I sat in the waiting room with the doors open and listened to the birds and them all coming and going chattering to each other the whole time. I felt foolish when I drove back how often I had bent myself out of shape for no reason other than I couldn't conceive of making my life easier and was glad I finally had when I got back to my house.
Today it was time for an emissions test again so I can get my sticker next week. I called yesterday to make an appointment but I didn't have to they said so I went this morning and waited while they kibitzed around and when I told them who I was and why I was here, one of them took my keys and said they'd do it right now and I brought a magazine so I sat down in the little waiting room with the door open and looked around this time and joined in the joking around with the staff and the other customer waiting. I listened to the birds and opened my Economist to see what they had to say about this new planet we found (which is on the cover this week) and what seemed like five minutes later the young lovely called my name like she knew me "Wolf? We're all set." On the way back I had the windows open and stopped on the court to chat to the neighbor about the rare power failure this morning where I lost almost two hours of work (duh!), I noticed all my flowers were in full bloom and I was glad to be home.
It was never a journey anywhere else. It was always a journey within. I decided on roast chicken thighs which I buy in an eight pack and slice right through the styrofoam into four packs of two, double saran wrap them, and freeze them. For two dollars and change me and the cats were living large where I gave them each a bit of crispy skin and their eyes almost crossed in delight. I watched some of the ball game and smiled at how some places enter your life and become a thing. Like the little waiting room at three bay garage with the open doors and the birds that sing, and I know in my heart as my own life draws near that I was right that she would have liked it out here.
Dear friends, I am just jumping back on to say that I've missed everybody very much, but am just not comfortable posting with the knowledge that DD in Colorado had been surreptitiously reading my posts all this time. Very creepy. Anyway, perhaps since a couple months have passed, she is no longer reading. I can only cross my fingers and hope she's not. But I do want everybody to know that I've rented an apartment in my old stomping grounds in the mid-Hudson valley of New York. It is just a generic one-bedroom--white walls, beige carpets...but it is pet-friendly, which was my main criterion of course, and which limited my options a good deal. So I'll just have to make the rooms fun, quirky, and charming by my own efforts--because this is a very ordinary, bland apartment complex. My unit is situated very well, overlooking trees, grass, and hills--a pretty view, and believe it or not I have deer on my lawn here just like in the Heartland! So that must be a sign. I am keeping the Ohio house for now, and will let my DD, ex-s-i-l, and the grands use it as a sort of stagecoach stop or halfway house when they trade off the kids on alternate weekends, as it is halfway between DD's new house and ex s-i-l's home. And of course I'll be there part of the time, too. I'm not sure how much time I'll spend in NY and how much time in the Heartland, but DD has purchased a new house, and apparently her current house has a buyer. She and the grands are moving away around the third week in Dec., and then I'll really be free to pack up Bandit and come and go as we please. I have him boarded for a couple days to allow me to be up here to sign the lease, start getting some minimal housing goods in, and see my friends, of course. (Very fun Halloween--I wore my fairy crown, had dinner with friends, and then watched Harry Potter with some other friends...great fun.) I love, love, love being home again, and just the feeling of connections everywhere, and having people to hook up with, and things to do that I love...sometimes I'll be driving down the road and see a restaurant or something that I had completely forgotten about...and I just can't stop smiling. And I love knowing where I am...where the roads go, where the villages are and what is there...knowing what lane to be in for the turns...not being afraid to drive around, because I know if I get stuck on the road there are always people I can call...not like in the Heartland, where despite the pleasant neighbors, I am really very alone, with no history and no connections. Anyway, I'm going back down tomorrow, will collect Bandit, and then do some cooking and childcare again until DD and the grands move. I do have to run back up to NY--and I'm bringing Bandit for the first time...next week to accept delivery of some furniture. And other than that, it will pretty much be second-hand stores and flea markets. I'll have to make up with creativity what I can't afford with money. Ha-ha. So a foot in both places for the foreseeable future. Did I mention that I love being back here in NY? I hope Bandit likes it...I think he will, because this complex has other dogs and plenty of good grassy, wooded spaces for dog-walking. I've researched a good vet (that I've used before), a good pet-sitter and trainer...so I think I can hook him up with people he will like and who will be good with him. Plus I imagine we'll get to know our new dog-walking neighbors, and he'll be introduced to the old friends, of course. Did I say I love being back? It's like that theme song for the TV show "Cheers", about it being nice to go where everybody knows your name. And over and over I hear, "Welcome back." "I'm glad you're back." and things like that. So, so nice. (New Yorkers are not rude by the way--that is an urban myth. They are warm and nice.) Anyway, as I bop around and cruise past or go in all the old places where Larry and I used to spend time, I just cannot stop smiling. A lot of nostalgia, but in a good way, with happiness. And I really am looking forward to the future, not back to the past except to visit the happy memories. I have plans,dear forum friends, (and those plans include checking in and trying to help where I can on these message boards.) Frankly, I turned myself and my life inside out and spent a lot of money (foolishly) helping my family...who mostly are just interested in what I'm going to do for them. Well, ya gotta do it, but enough is enough. So you'll see me on these boards from time to time when I think I can be useful. Love to all--it was really hard staying off. Hugs all around. (((((((((((())))))))))))
Lovely to see you back, dear friend. Your posts are always a highlight on the site. It makes me very happy that you're in a familiar place that you love and where you have many friends and memories. Welcome back!
It is so wonderful to hear from you! Glad that you followed your heart back to NY. It is a nice thing that you are doing in keeping your Heartland house so the family can use it for a way station. Best of all, it is good to hear your enthusiasm and zest for life!
So lovely to read of your happiness, Elizabeth, it is so very well deserved. It all sounds just delightful, what was that song.... I know, "Don't worry, be happy." I wish that for you and Bandit. All the very best, Cassie
Wow, what a pleasant surprise. Welcome home. So happy to hear about your decision to go "where everyone knows your name." I hope you will continue to visit here and share your joys with us.
Glad to hear that Elizabeth...if you're that happy & at peace, it was the right decision. I hadn't been in touch because I lost your email address!! I changed to Gmail & didn't take the addresses with me :( ,although the email will still come to me through the old email server. The best for you & Bandit. Let us know how it's going.
Wolf, I see you deleted your comment, but I have been thinking about it and I think you are correct. Perhaps Elizabeth needs to go one further and change her sign in name, if that is possible. Human nature being what it is. . . more than likely there will be an occasional look. (In psychology, if there have been rewards for behavior in the past, the subject will continue to check to see if it will happen again and losing complete interest takes a very long time.)
I agree with you but she has decided to forge ahead which I also agree with.
The real trick is to not let the secondary garbage creep you out when major garbage is in your face. Very few here have that ability and if I had it I wouldn't even be here anymore but would be off triumphing somewhere else.
Edit - a reasonable analogy might be learning your parent is reading your facebook stuff which happens millions of times among the billion plus facebook users. They're young though and don't have our scars. The ideal way to respond is to go ahead and be ourselves anyways and teach ourselves to shrug just because other people are watching. I'm an example of that. I even have a troll here who jumps up once in a while in a very passive-aggressive manner. I go ahead anyway because I don't choose to censure myself and my life because someone is annoying.
We want to be protecting the vulnerable but that raises the question how do we know how vulnerable anyone is about a specific topic or on a specific day. What price we pay without conscious realization when we are moved away from something good because we are too vulnerable - are the stories never told but which happen all the time. A quick shout out again to Cassie who stood up for me. I'm vulnerable too.
In my life I've been in positions that meant I had to help people emerge in order to succeed myself. One of the things I always taught was that when you stand up and try to lead - don't expect life around you to remain the same. When you try to lead you give up being one of the guys and you will not get the sympathy others get.
Lindylou is an example of a person who shares more than most as an active caregiver where Elizabeth is an example of a person who shares more as a survivor coming out of the 'afterwards'. Neither probably think of themselves as a leader or that they're showing leadership. Everybody else does though.
Taking active caregivers out of this, everyone is leading themselves to their future however much we prefer to see ourselves just dealing with life happening to us. Life does happen to us but that is only part of the truth.
My last word on this thought is don't feel pressure, just choose where you can.
Wolf, I always have to read your input two or three times to understand. Sometimes I don’t get it, I’m in a different place maybe. Sometimes I do, and feel richer for your input into my life. So thank you.
I just want to add one thing in your most recent thoughts. You said, that apart from “active caregivers” "everyone is leading themselves to their future selves. I want to tell you that this particular active caregiver is fighting tooth and nail for her “future self”. I am not just trying to survive. The me in me is screaming, that caregiving while certainly most demanding, and at times overwhelming, is not everything. While I know nothing is certain,( I could come down with some dread disease or injury after all) I think the thing I fear the most is the all consuming grief that some of my fellow travelers are experiencing when AD, and their beloveds, end. It is as if they have been leaning into the wind of a most horrific hurricane, the wind stops suddenly and they find themselves face down on the ground and its close to impossible to get up. Understand that I am not judging. It could happen to me. It is just that inside of me, right now, I am wailing nooooooooooooooooo. And the problem solver in me is already trying to deal with future options and plans that will hopefully be in place so that I am not facing a bleak and barren landscape when AD, and my beloved, end. If, of course, the future does not take me first. Does this make sense?
Lindylou, back eight years ago when I was in the trenches taking care of my AD wife, I got hold of a copy of Coach Frank Broyles "Playbook for Alzheimer Caregivers", which stressed the importance of "taking care of the quarterback" (the caregiver). I liked his analogy of a coach needing to be able to put a team loss behind him and start planning for the next game, which is what I was able to do -- beginning to look toward and work toward my "after". I remarried seven months after my precious wife's death, with the full understanding and approval of family and friends. It sounds like you're doing a good job of working the problem.
Elizabeth, I too have missed you and have hoped that you were getting along. So very lovely to hear that you are going back where you belong and that the memories now bring happiness, not grief. Congratulations!
I feel as though my grief has been during the past years, especially the last two, since he's been in the nursing home and is now in hospice. I'm hoping that my grief will be less when he's gone because of this. But it scares me when I hear how some of you are reeling from the death of your loved ones. In some ways, is it not a relief, for you anfor your spouse when they pass? I know it will be difficult but how can it be worse than watching the person you love become someone who really isn't that person anymore. I feel I've suffered that loss already. Do any of you find this to be true?
Bev, I did feel a profound relief that my wife passed quietly and was released from this. I felt a big relief for myself after a little while too. I remember walking around reminding myself "It's over" meaning the ordeal is over for us.
Even though I knew all the time after the diagnosis that this was fatal, and that she lost all communication and knowingly responsive skills and for the last two years didn't speak at all, and that I was home alone for three years while she was in a nursing home, it changed how I experienced her passing I'm sure; but, it still hit me hard and I was still shocked and I did have grief.
I think it may be that our makeup, our circumstances (what happens and doesn't), our will, our desire, and our faith all play a role in how we do afterwards.
I would say I would have been much more devastated if she had passed from some sudden thing but I'll never know that.
Good question, Bev. For me, no matter how impaired he was, and no matter how miserable, exhausted, lonely, etc., etc. that I was, he was still there. He may have been physically frail and totally demented, but that was still him in the hospital bed and the wheelchair. He was still alive, no matter how much of a train wreck the whole situation was. I literally would not have been surprised if I dropped down dead before he did--it was that bad--but still, he was there...still breathing, still agitated, still incontinent right there in the hospital bed pushed next to me where I was asleep (well, trying to get some sleep) in our big bed. So when he died, there was some relief, chiefly in how I felt physically. Within two weeks, all my body aches and pains went away. I hadn't realized it, but he was too heavy for me, and all the lifting and transferring was taking a toll on my body. I thought I had arthritiis, but it turned out just to be over-use pains, like sports injuries I guess. So it was nice not to be in pain anymore. And it was a godsend to be able to get outside whenever I wanted and take long walks on our Metroparks walking trails--I dropped 15 pounds fairly quickly, which was weight I needed to lose. And I have to say that getting all that medical equipment and "stuff" out of the house was a relief. Boy, I hope I never see another Depends in my life again. (Joke...sort of.) But for all that, I missed him dreadfully, and it took a good two years to really stop feeling miserable (it lightens gradually, like fog, and it's odd how you have good days and bad days--it's not a linear process)...and to find a lot of happiness, a way forward, and a new purpose in life. We had a happy and an extremely close marriage, though. We were all entwined with each other emotionally, spiritually, intellectually--I would hazard a guess that for marriages where the partners are not so incorporated (? is that the right word) into each other, it probably is easier to re-build.
Oh, I still love him and care for him,just not in the same way. He's like a child now, and I care for him in that way. But I live alone now and, frankly, I don't mind it. When he went into the nursing home I was, literally, hysterical. But after these past two years I find living alone is not as bad as I thought it wouldn't be. It's good not having to worry about making dinner at a certain time, or making dinner at all if I don't want to. I don't like managing everything by myself, but I've been doing that for the past 10 years anyway. I know I will have grief when he passes; after all, we've been married for 58 years (we were very young when we married) and we had a good marriage. But the grief I have felt all these years should, I think, give me some relief when he's gone. I hope.
Bev, you asked about grief, and I’ve been thinking about how to answer you. I, too, had to put up an emotional wall, and that did help. I had already grieved a lot by the time he died. I was devastated when he died a terrible death, and one of the overriding feelings I had was that I had failed, had lost the battle. I had thought that I could delay or lessen the ravages of the disease, and I didn’t. Then after his death, I had 4-5 years of battling his children and ex-wife, and that took time and energy. When that had all settled down, I was 86 with its own challenges. Then grief came in gently.