Not Sure Where To Post This

[enna]

I am so sorry, Kay. It's those good and not so good days that hurt so much. I am here if you want to talk. How is your weather there? Are you able to get out and walk with Arlie? I hope your ankle is healing. Did the doctor have anything to say about it?

~♥~

Anne

[kayc]

Doctor said absolutely nothing about my ankle. She referred me to a podiatrist but didn't say what for, perhaps for the neuropathy. Had to get blood drawn and need to go back in after they get the results. Got a referral for eye doctor, need to make appts.

[kayc]

Mom was better yesterday, she knew me and was truly happy/appreciative to see me. I wish I could have stayed longer but had doctor & vet appts, Rx to pick up, didn't even have time to pick up some groceries. It was so nice to see her though, I just wish I lived closer.

[enna]

I can imagine how much you would have liked to stay longer and visit with your mom, Kay. Those moments of lucidity are treasures to hold on to.

You have so much on your mind these days.

Have they given you a quote on the roof yet?

I think of both you and Arlie when it comes to your ears - i see my ENT doctor for a follow up on Monday. He mentioned something about surgery on my R/ear due to a mastoid rupture I had decades ago! I asked why and he said that he sees a lump that he'd like to have biopsied! We'll see.

Keep us posted on how Arlie is doing and you of course.

[kayc]

I am getting the roof put on now, Anne, they did the bid several days ago but it wasn't complete because they didn't know what they'd find when they pulled the roof off. They shored up the truss and replaced the bad decking.

My ears have me puzzled because it's my right one that's been bothering me but when I went in she said it was the left that's infected. I feel like the right one is plugged, she said both are free of wax, she said there's a nick in the right one that'll heal in a week. I asked her why I feel sharp pain way inside it then and she said sometimes the brain tells us the wrong one. ??? But it continues to feel...not right. If it doesn't improve in a week, I'll have to go back to her.

Our ears are nothing to mess with, I'm sorry you had a rupture, that must have been extremely painful! Let us know what the doctor says Monday...

[mfh]

Anne, do keep us in the loop about that rupture. And Kay, about your ear.

I think many of us are learning that as we age we are more vulnerable to things going wrong and more things do go wrong. It is frustrating as we head into what are called the golden years. I would like to know who named them that originally. I bet that person was 25 years old.

Glad you are going back in, both of you, to see the doctors. That matters so much as things tend to pile up otherwise. My PT is huge on prevention.

[MartyT]

Kay, my dear, I thought of you and your mom (and so many others here who have traveled this Alzheimer's journey with their loved ones) when I read this: Grief and More Grief -- A Tragic Emotion for Caregivers ♥

[mfh]

Kay, I just skimmed this piece...too painful right now to read it carefully (as I am doing a lot of reliving this week). But I did see enough of it to highly recommend it. In looking back to Bill's (and my) journey through Alzheimer's, I wish I had read more. Just seeing the sentence in this piece about how she called him twice a day to remind him to take meds...I remember calling Bill every hour (between client hours when I was in my Madison office) to make sure he was ok and reassure him that I was coming home soon. He was still ok alone but ...I finally closed the office and worked from my home office only. The point being...there is so much to learn from this article and the whole site (Reading Room) and if I could recommend anything to a caregiver it would be to educate yourself, take care of yourself, share with others. I did none of that and am still paying the price physically especially as well as emotionally...

Great reference, Marty.

[kayc]

Yes, I read it. I don't think I really learned anything new, but I know I'm not alone in what I'm going through. It's a hard disease to "accept", esp. never knowing what will present from day to day. I, too, miss being able to talk on the phone with her, particularly since we're so far away from each other. She used to call me all the time, hash and rehash everything, over and over again, and it'd annoy me...now I wish she could call me or answer the phone. They finally took her phone out, it'd been months since she'd used it.

[enna]

Kay, I know all to well the changes you are going through with your mom right now and I understand what Mary said about it being too painful right now to read through the entire article.

Good article, Marty. I think I read everything that was ever written about Alzheimer’s disease (which is what Jim had) during the six years Jim walked through that door! Those who live through the experience of a loved one having a brain disease know that things change from hour to hour. Some are able to keep their loved one at home and others cannot – it makes no difference to the caregiver – we never feel that we do enough.

Whether our loved one had dementia, vascular dementia, Alzheimer’s disease, dementia with Lewy bodies, or any of the other forms of brain disease it all means just one thing – our loved one is gradually losing the ability to know what is going on. Changes occur daily and even hourly.

It is how it is…when I was in the throws of it I was not thinking of anticipatory loss. I was too busy being a caregiver. Most of my grieving began after Jim died. As the reality set in I was amazed at what I actually did during those years. Oh, I had those quiet minutes when I would sit on the couch in the early evening by myself knowing that Jim was just down the hall in his bed fast asleep. When I went to the store for needed supplies even though his nurse was with him I always felt guilty. What if something happened while I was gone? When I took the time to go to my ALZ meetings I always had Jim on my mind. I would think about how he was slipping from me even though I believed he knew who I was right up to the last day. His ability to speak was gone about a week before he died but his eyes told me that he knew me.

When he was bedridden and could still talk he would call for me twenty or more times a day. I’d go to him each time and most of the time he just wanted to see me. I think he needed to know that I was there for him. He did become dependent and that was all right with me because I was the only sure thing in his life at the end.

I was privileged to be able to keep him at home until he died. This was what we talked about and what he wanted. It comforted me knowing that he was as near to me as he could be. To this day I wonder if I did everything I could to make his end as comfortable as it could be. I will always wonder if I did enough. Did I do enough?

I was and always will be grateful to HOV and his private nurses during those last weeks. It allowed me to go to lunch with friends, get my haircut (which I never seemed to have the time to do), do errands, see a show, and just go somewhere to read by myself. You learn early on that it is necessary to care for yourself so you do not ‘burn’ out.

This could turn out to be a book so I will leave and make room for someone else to share their experience. I still read the articles from the Reading Room.

[mfh]

I just lost what I wrote again....too many windows open. Anne, your post is all but identical to so much of what I went through and Bill went through. There were times when totally exhausted I felt badly or "guilty" because he was sun downing which he did daily and I just could not be enough for him. I think all caregivers probably feel they fail their loved one as we can not have our dream...total healing of the disease. I felt I failed Bill and finally came to terms (99% anyway) with that. One thing that helped was my trip to see George Anderson...medium in NY. I went with the need to know Bill did not think I failed him and that he was with me. The medium told me at two different points (it is a blur but I have the CD) that Bill wanted me to know I did not fail him and that he was with me 24/7 like a guardian angel. I came home feeling peaceful. I was told so much that no one knew and that George could not possibly have known. It helped. I think what matters is that the person we loved is not judging us, we are doing that to ourselves because we love so deeply and want to be all we can and more to the person we love. Your post is painful and real and I appreciate that you have shared it with everyone here.

[mfh]

I just wrote the above post and went to see what was happening on Facebook. George Anderson, medium, posts about every 6 weeks to 3 months. It is sporadic. He posted this morning and this is his post. A meaningful message.

George Anderson: As a young man, many years ago, I remember going for the first time into Manhattan to see a musical called "The Fantasticks." It was in a real Bohemian-style theater off-Broadway, and the audience was mostly post-hippie types who flocked regularly to this modern style of musical--a bare-bones set, politically incorrect dialogue and minimalist message. It still is an enduring hit, even if I didn't (and still don't) quite grasp the whole meaning of it. I found most of the musical a little high-minded for me--brainy concepts and word plays that made me feel just a little out of the loop and a bit square. Except for one line in the show that was meant to be comedy, which hit me squarely between the eyes. The character readies for his exit, stops firmly and says, "Remember me in light!"

At the time I heard those words uttered, I had already been hearing from the souls for quite a long time. It was also around the time that I came to understand that communicating for the souls was to be my path on the earth. As I was coming to grips with the fact that it was a responsibility to hear from the souls and help grief stricken families try to pick up the pieces, the simple words from the one statement in the show stuck in my head as I made my way back to Long Island, New York. I couldn't think of any better way to describe in just a few words what thousands and thousands of souls wanted their loved ones to understand, but it came to me sitting in a torn velvet theater chair--the souls want us to remember them in light.
Life on the earth is a series of snapshots--images burned into our minds and hearts that are not only for the eyes, but for the senses as well. They are instances we can recall down to minute detail and they stay with us forever. The images are markers in our lives, and the lives of our loved ones--the pride in your parents' faces when you received your diploma, the first time your newborn looked into your eyes, the vision of beauty of your daughter in a wedding gown, the grace of your friend's kindness, the sting of the words "sick" and "incurable," the quiet of a last breath. We can recall where we were, how we felt, how the clock ticked and who we were when those images were made. Every life is a book of snapshots that make the life that we live, and every picture book is a compilation of the moments we've lived .

I often wonder why people, in loss, rifle through the snapshots only to come up with the most unflattering ones in order to tell the story of the lives of their loved ones. In a life of funny moments, poignant scenes, loving touches and generous smiles, we look for the images of our loved ones in perhaps the worst light possible--slumped on the floor, crumpled behind the wheel, frail and bony in a bed, desperate and wild--eyed in anger. With so many images in the course of the life of a human being, why must the last image we carry in our hearts be so bad?

The souls want us to remember them in light. They don't want their last image to be of anger, hopelessness, pain or turmoil. They want to be remembered in laughter, in beauty, in hope, in joy. They want us to remember how much they loved us, and how much they knew they were loved, even if those snapshots are a scant few, they are still there. It's just a matter of finding them.

I know very often people who come to see me are heartsick at not having been near at the time of passing of a loved one. I listen, I understand, but I am secretly glad for them. Why have the ugly image of the end of a physical life as the snapshot you torture yourself with? I ask people to tell me about a wonderful time in the lives of their loved ones, and in an instant, their smile returns, and their eyes sparkle with memories of good times, laughter, peace and love. So why not remember the light? Why not look for a moment of time that will be the shining moment of your loved one's existence? The images of loss and despair will always be with us, but no one has said that they need to be in the front and center of our picture book. When people tell me the stories of their loved ones, it ends with their death. We already know that is not the end, so it's rather like showing someone a half-developed picture to judge. We cannot see the rest, but the camera did catch it--it is only unclear to us. We do know that the rest of the snapshot, though we cannot see it, is something wonderful. We have to believe that it is, because we can see the faintest of outlines, and we have to pick up the clues where they can be found in that picture. See there, the outline of a smile. Over here, the faintest image of a mended heart. In this corner, the blurred image of forgiveness, and in a fuzzy background, understanding and peace.

Remember your loved ones in light. Remember yourself in that light as well. Times were not always so tough, and they will get better. Remember the laughter, the joy, the beauty and the hope. Although in time it will get better, sometimes a beautiful picture of a happier time is all we have to pin our hopes on, until the day we won't need a picture book to remember our loved ones--the day we will see them again in all their light.

[MartyT]

Beautiful and heartwarming, Mary. A gift for all of us. Thank you so much for posting this . . . ♥

[kayc]

Anne, it does not pain me to read about Dementia, it helps to educate one's self to have a better understanding of what's happening and what's to come, but that's how I always tackle things, I'd rather educate myself and prepare and do what needs to be done than shy away from it.

I also understand what you're saying about caregiving, I experienced that for three years with my MIL, she was bedridden with cancer, and needed complete care, we had her in her home, so I traveled there daily with my babies, going home at night to fall into bed...her husband stayed with her at night so I could sleep, but he was unable to cope with day to day things...some people are copers, some are not. I hosted out of town guests, cleaned both homes, shopped, was her link to the outside world, took care of her "personal needs", sewed bedgowns for her, all while raising my babies...and taking in babysitting to make ends meet. I didn't have time for support groups! The nearest one would be 60 miles away and who had time/money for that?! I thought it laughable when it was suggested. There was definitely times I felt burned out. Someone said by the time you've been through this for so long, death comes as a relief...yes, but not for me, but for her. I was just glad to see her finally out of her suffering. She suffered more than anyone I have ever known. And she did so stoically. She was my best friend and the mother I'd always wanted, I didn't know how I was going to live without her. That void has never been filled. 100 people could not fill her spot. She was the most thoughtful, caring person I have ever met...aside from George. People like that are so special, there's nothing you wouldn't do for them!

Mary, thank you for sharing this with us...it helps to be reminded not to think about their most painful moments, but to focus more on the wonder we shared.

[kayc]

Went to see Mom yesterday...it was depressing...she kept saying she wanted to die and didn't understand why God was so cruel to her. That's not like her (thinking). She kept asking why. I told her she probably just has a few more months and there's no answer to why. I told her it's not God's doing, that it just is what it is. She asked how I could accept what comes in my life and I told her again, it just is what it is. I reminded her that a better day is coming for her, and it will be forever. She asked if she'll be like this and I said no, she'd be perfect and she'd be with Daddy again. Her conversation like this went on for hours. It's hard to see her like that. But I have to remember, each time I see her, I have to expect and be prepared for anything. It changes each time.

[enna]

I am glad that you were able to see your Mom yesterday, Kay. It has to be so very hard to see her change back and forth so much. I am so sorry that you are traveling this difficult journey. I really liked how you answered your Mom when she asked if she would be "like this" when that better day comes.

When I was young I never thought about the opposite of life - death. Now that I am older and closer I do think about it. I understand about life/death now.

I believe that it is your faith that is helping you. Your acceptance of "it just is what it is" gives many of us the courage to accept life's lessons.

You continue to amaze me. You are indeed a beautiful person. We walk with you on this journey.

Anne

[feralfae]

Dear Kay,

Even in the face of such sadness and stressful visits, you keep your wonderful perspective and your heart-centered outlook on life. You have such a beautiful spirit. Even I am comforted by your words to your mother.

I think we forget that we were born perfect and return to that state of Grace and love of G*d when we leave this phase of our existence. Thank you for the wonderful reminder.

I am holding you close in my heart these days, dear Kay.

namaste,

fae

[kayc]

As I visited my mom this week, again she said she didn't have a reason to live. I didn't argue with her, but I disagree. It is hard to watch her struggle and I don't know why she has to go through it instead of getting to go be with her husband, but God is keeping her around for some reason or another. I read Chris' post and I know he doesn't want to be here, but he is. And I talked with fae and I hear in her voice her valiant fight to live. How I admire that! I'm not sure I have much "purpose"...I had purpose when I was raising my kids. I had purpose when I was George's wife. But now? I don't feel much, but I do avail myself to people, perhaps that is my purpose. It's hard to feel it when you're alone so much, and perhaps that's part of Chris' struggle. But neither am I ready to throw in the towel. When George died, I didn't want to live...but not one to believe in suicide, live I did. I am a survivor. I've survived job losses, injuries, pain and hurt. And I will continue.

I wish I knew how to help my mom, but all I know to do is visit her as I am able, to show her caring and compassion, and be there for her. I listen to her, I show affection to her...what more is there?

I wish fae could go to her meeting today even as I go to my church. But instead she is stuck in a hospital. I hope she continues to feel the outpouring of care that she's received there...if she is the first NETS survivor, how much more apt could that be! Our dear fae...it would only be fitting. She is a survivor, she has the fortitude and vision. If anyone can, she will!

[MartyT]

Kay, my dear, trust me. Not only do you have purpose, but you live your purpose each and every day.

Yes, you DO avail yourself to people.

You "show up" and give the gift of presence, whether that is in person when you visit your mother,

when you're with your family, friends and neighbors,

or when you give yourself so generously to each and every one of our members in our forums.

Your presence in this world is a priceless gift, and we are grateful that you are one of us.

[mfh]

Kay, I just came across this and thought of your post expressing wonder about your purpose. I also just read what Marty said to you and I have to say I totally agree. By none other than John O'Donohue:

A blessing from John O'Donohue

May you recognize in your life

the presence, power, and light of your soul.

May you realize that you are never alone,

that your soul in its brightness and belonging

connects you intimately

with the rhythm of the universe.

May you have respect for your own individuality and difference.

May you realize that the shape of your soul is unique,

that you have a special destiny here,

that behind the facade of your life, there is something beautiful,

good, and eternal happening.

May you learn to see yourself

with the same delight, pride,and expectation

with which God sees you in every moment.

- John O'Donohue, Anam Cara

[kayc]

Yesterday I had a lovely visit with my mom. She continues to know me and I think the not knowing when she first came to her care center may have been to all of the adjustments and it had to be such a shock to her system, plus they have her on medications now that she hadn't been on before and that may help. I continue to see her on a regular basis, and am the only one that seems to, and I think having my face in front of her so much, helps her. I know there'll come a day that she will no longer remember in spite of best efforts to stave it off.

When I got there, she had her nails painted coral pink and looked so pleased and proud of them! It was really cute. Mind you, my mom has only had her nails painted once in her life that I recall, and it was many years ago! I was glad to see the nurse making her rounds with the nails because so often they neglect them and I have to clip them or call their attention to them...I can do her fingernails but not her toenails, they're way too thick. Anyway, I got a picture for FB.

My mom asked me how long my dad had been gone and I told her 32 years. She said, "Oh, he won't remember me then!" She sounded completely anguished. I told her "Oh yes, he remembers you! He's waiting in heaven for you! He loves you!" She said, "He does? Why?" I said, "Because you're his wife, the love of his life!" She started crying. It was tears of astounded joy that he could still love her. I would not have traded being there with her yesterday for anything in the world. I feel my family really misses because they don't see the point in visiting her. They're missing so much.

Yesterday I was talking to my mom about the paper dolls she and my sisters made each of us in our Bluebirds Troop, to match our haircolor and eyecolor, and she, of course, didn't even remember what a Bluebird was, but she said she'd like a paper doll, so I said I'd make one to match her hair and eyes...this morning I mailed it off to her. She may not remember when she gets it, but she does seem to like looking at visuals, and you never know what might brighten her day.

[mfh]

Kay I celebrate with you the visit you had with your Mom. If I had "given up" visiting my own mom when she was in her final weeks and months...I would have missed so many blessings and so many wonderful moments like you had yesterday. You were and are a healer to her and I know in doing that, it is healing for you also.

[MartyT]

I agree, dear Kay. You truly are a devoted daughter and an inspiration to all of us. ♥

[enna]

You continue to be someone I look up to Kay. I am so glad that you are experiencing these happy times with your mom.

[kayc]

More and more I hear people say they quit visiting their dementia care loved one. I continue to think that their memory is of lesser importance than their feeling loved and cared for and not abandoned. I am getting to know her afresh in a way since she seems quite different than she used to.