I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. It is a tribute to the man who used to be my Sid, and is now being destroyed bit by bit, day by day, faster and faster, by Alzheimer's Disease, leaving me to go it alone.
That was a tear-jerker Joan. I can relate greatly to your comment about the depths of despair and financial ruin. You don't delve into why you would lose your home if you placed Sid, but that just doesn't sound right. From my experience only, I was told the homestead did not count against you when counting assets to try to get financial help for placement. It is tragic to lose the love of our lives inch by excruciating inch, that we must also lose everything we worked hard for all our lives is beyond cruel. I am sorry for your heartache Joan and I pray an answer can be found ((hugs))
We lost our home 4 years ago in the housing crisis. We currently rent an Independent Villa in a continuing care facility. Medicaid will not allow me enough of Sid's SS money to continuing living here. And before everyone asks, no, he cannot move to the Assisted Living in this complex because he is too physically disabled for them to meet his needs.
However, the main point of the blog was how I have come to realize that Sid has always been "the wind beneath my wings". I could not have achieved the success I have had in anything without his loving support, and I am finding myself adrift, lonely, and practically paralyzed without it. I ask that when responding to the blog that everyone discuss the loss of that support if they had it as I did, and how it has affected them, NOT the Medicaid situation. I can assure everyone that Sid is on Medicaid, has been on Medicaid for almost a year, and I have all of the information I need concerning their policies. I appreciate your concern in that matter, but it's a non issue at this point. It is what it is and I have to deal with it.
I am sure there are others who did not have the loving support I was lucky enough to have. I wonder if it's been any easier for them to go it alone. I really thought I was strong enough and sure enough of what I needed to do to be "on my own", but being without that wind under my wings is much more difficult for me than I thought it would be.
Joan, is there any possibility that you could move to California and live together with Joel., either where he lives now or in a larger place that together you could afford? I feel so sorry for you. I remember how excited you were when you first moved to where you live now, it was just perfect for you and you expected that when the time came they could help you care for Sid. I wonder why that has changed now. I hope the Marketing people didn't mislead you. Some are known to say anything to get contracts signed.
Aren't you too young yourself to live there? I had wondered if Sid was placed if you would be 'grandfathered' and get to stay on since you're there already.
I'm so sorry you are going through all of this stress. Bless your heart ..sending you a big hug!! Nancy B*
Joan, it is hard for me, for all of us I imagine, to see you hurting so deeply. The urge and want to try to find a way to help your situation is strong. I do however know you are and have been on top of these matters and I respect your wish not to discuss it further. ((hugs))
Yes Joan, I could relate to your losses and the feelings you expressed. For those of us who did have solid loving relationships I think it is more crippling to struggle through the immense loss. We aren't losing only a spouse, we are also losing part of who we were. We aren't just losing someone we love deeply, but we are also losing someone who loved us greatly. We were a team, each bringing out the best in the other.. and all the other needed to feel whole.
I have said many times what I miss so much is not only the support and love, but that secure feeling, that feeling that someone loved you so much they would do anything and everything they could for you. I miss being someone's top priority. I miss the secure feeling of no matter what happened I could always turn to Lynn for comfort. No matter how deep the pain, he could always find a way to make it better. In his arms nothing seemed nearly as bad as it was, he made me feel not only loved, but safe. I miss that so much it physically aches.......even after all this time.
So sad your lose. But know you were the wind beneath his wings too. Everything you have written tells me what a good team you both are. You know you are strong and going through another new transition, you will make it....what it will look like at the end time will only tell.
OMG, Nikki, you understand how I feel so perfectly. I think you could have written the blog as well, if not better, than I did.
And yes, I have not written about it, but I have been thinking about it a lot lately - the idea that someone could love me as much as Sid did and still does (he tells me so every day) is mind boggling to me. Yes, that love made me feel so secure and happy for so long - it must be what made me feel I could conquer the world and do anything. I miss the strong trust and security. And yes, it is a pain so deep, it is physical.
I think knowing/thinking you can do it on your own and when reality makes it necessary - most everyone will learn new things about their own. No I did not have someone believing in me, supporting me on my goals like you, but I did have a Mr. Fix-it. And he took care of the outside things of living in an RV and I did the inside. l know I can do it but in reality I do not. I want him to do it but that is getting less and less often that happens.
Yes Joan, Nikki, I too can relate to everything you both wrote. Nikki you wrote it beautifully. Joan There has to be a way for you, my heart goes out to you, losing your home the first time was bad enough. I miss all that, the unconditional love he showed me...he was my everything. He always said He loved me more that I would ever know. There have been days when I didn't think I could go on without him. Losing him is losing everything. Trying to be strong, but it's not easy. His motto was "never give up"...there's no winning this fight.
I never had anyone who would do 'anything' for me. I had someone who would make a sandwich if she was passing by, but who's molecules in space fit exactly with mine and who's absence is like having the side of your plane ripped out. I protected her and put a smile on her face. She was my reason.
I'm sorry you're facing this Joan. I hope you have some unforseen good luck show up.
Joan, I am one that did not have the kind of love and support that you had - I learned very early on in my marriage that if something needed to be done, I had better do it myself.That is not to say that my DH didn't love me (he does very much) and that I don't love him (I do love him, probably more now than I ever did). It just means that he couldn't be counted on to support me when I needed him, to boost me up when I was feeling low. To be a responsible adult. I've never had the luxury of having someone look after me. I've always had to be the strong one. And there was a period in our marriage where we separated for a period of 6 years, in the 1990's, while he worked out some of his problems. Maybe it might be easier for me, because I have relied on my own resources for most of my life, to "go it alone", because I have shown myself, over and over again, to be able to keep "house and home" together, and survive the crises as they came along. How I used to long for the kind of life partnership that you and Sid enjoyed! It just wasn't meant to be. But I still miss the companionship, and the camaraderie, that we had in our relationship, even if it wasn't perfect. I miss a lot of things about my DH that aren't there anymore. And I still have the stresses that come with being an AD caregiver. And its hard for me to say for sure that it is any easier, when I don't know what it would be like to have, and lose, the kind of relationship that you and Sid enjoyed. Its just different.
*sigh* Oh, my dear, I'm so sorry. I have such hope that you will get some relief on at least one front soon. Thank you, as always, for sharing your experience with us. I'm sure you don't want to always be our sherpa, but it is greatly appreciated.
Jim and I had 13 years together. Our deep connection was one of the mind, even more than of the heart. After raising my son alone and being alone for much of my life, finding Jim was a precious gift. He gave me both professional and emotional support I'd never had before and we laughed at everything. But most amazingly, for the very first time in my life, I could feel what it felt like to be loved. Wow! I gave up almost everything to be with him because that feeling was so incredible.
Jim and I are both deep introverts who love and need great amounts of private time. But being with Jim was even better than being alone. It filled the same need as being alone without the terrible sadness of being lonely. The few years we had before AD were wonderful. We were replete with happiness.
I guess that's what I can't get anyone to understand. I want to shake everyone and yell right up in their faces, "You can't know what I've lost! He was the ONLY one whose love I could feel! It was RARE! It was UNIQUE! I will never ever have that again!" It's not just some guy with Alzheimer's. It's my guy. A treasure no one else could see but me. Stolen and lost.
And now? Somewhere down the road, sooner or later, I face the same horrible dilemma you are now in. Day by day, financial ruin gets closer. Every dime I spend now I'm taking from a progressively emptier future pot. So there's that to worry about.
But the greater loss of my dearest friend and closest companion is too much to consider right now. I have to be happy because that is what is required. The dark sorrow must wait its turn. I don't look forward to sorrow having its day.
Well, at least there will be a lot waiting for me down the road because I'm kicking so much stuff down there every day.
I send you ... well ... hope for a better tomorrow.
Dear Joan, the wind beneath your wings... how beautifully stated. Yes, I can relate to that. Here I am released to fly on my own (after losing DH 4 months ago), and I feel like I can no longer fly. The wind is out there, there are other birds soaring along and here I am walking on the shoreline with no desire to soar.
I wish for some calmness in your life as the many decisions are made and to keep on keeping on, with one foot in front of the other, or just sitting and taking a deep breath once in a while.
Joan, so sorry for the situation you find yourself in. Thank you for sharing it with us and my prayers are for you to come to the right decision for you and your Sid. Your contribution of this forum is so valuable to all of us. Nikki, as always you stated it beautifully.
Frank was truly the" wind beneath my wings" and now that wind is gone and I'm struggling to deal with life even after close to a year. He was my true soul mate from the beginning of our time together which came to 60 years, 5 months. He was an intelligent person who knew how to deal with other people in such a way that they "got" what he was saying without being mean or unkind. He was capable of "fixing" anything and loved keeping his yard and flowers in good condition. He took care of our finances for which I am thankful everyday as I should have enough to live on from now on. He was my best friend and my world will never be the same again.
Joan, My heart just breaks reading about how hard this is for you. I was never lucky enough to have a soul mate. And the wind beneath my wings was more like a gale force wind most times. But he was mine. And when it was good, it was really good. DH did not do things for me as much as others. But he never stood in the way of me doing what I wanted. And I am stronger for it. Just wished I had learned how to do the electrical things he could do. In so many ways I miss the fighting. Poking him with a stick. It was the making up that went along with it that was all worth it. LOL
this is all almost too painful to read. From all of you. Dado to me, was, not so much an inspirerer, but always backed me up and supported me no matter what I did. He never bucked the tide with me and thought I was a hard worker and always called me a really good artist. (not true be he thought so) Just a dear dear man that loved and accepted everyone, never had a bad word to say.
I just cannot say how deeply I feel for each and every one of you, and us too.
Joan, Oh how I wished we didn't have to go through this! I wished I could tell you that I have no idea what you are going through, but like many of us here, we know all too well. My DW has been my partner for 29 years. She has been my emotional and psychological rudder all these years. When I would be upset or something would be troubling me, she would be there offering me encouragement, support and direction. I always have appreciated her point of view because I could sometimes not see the entire forest because of the trees. Now, that person I have depended on for so many years is gone. I feel a bit lost and without direction. Oh, I know I have a great career, family and a few close friends, but I don't have that person that made me whole.
You are an inspiration to all of us here. I am so glad you share your experiences and thoughts with us.
It is so painful isn't it Coco. I purposely didn't write about the loss I feel in my first reply to Joan because when I let my mind wander through that pain, I find it crippling. But I think it is so important for us to talk about these raw feelings, to let the other know we do understand, that we are not alone in our darkness. It's just so difficult revisiting that immense pain... and loss.
Then as always, I find myself thinking of those among us who have lost their spouse. That pain is something I can't begin to try to imagine. I find just the thought of not being able to see and touch Lynn, to just be in his presence, well.. my mind will not let me go there because I truly can not handle just the thought of it... I held Lynn just a little bit tighter today and I had myself a good cry, for me, for Lynn, for Joan, for all of us. ((group hug))
they have said many times opposites attract. if that's the case, then we have lost that 'opposite end of our spectrum' that maintains the balance and harmony within the relationship and marriage. how can we not feel deep remorse regret and anxiety over that profound part that is now the missing link? we are now functioning on half of everything that was whole. and are expected to suck it up and go forward and make the best out of it. it makes for a very trying time. yes I can relate to the loss of the wind beneath our wings.
Although I never realized it at the time, I think she was the wind beneath my wings. Now that she's not here anymore, I'm continually thinking of her and can feel a gentle breeze.
I have to say that while I was going through the dementia experience, I felt the wind beneath my wings from this site and all the caring people here.......georgieBoy
Yep ... from a 'fairy tale marriage' to now ... well, to a loss that is hard to even put into words. All those 'little things' that make one's life so extra special due to the depth of a friendship and love that cannot be adequately described to others ... a relationship that truly gives credence to describing one's spouse as one's other half ... are gone. Whereas I know that Clare still loves me as much as ever, our relationship is now just a shell of what it once was. All of those 'little things' I came to depend upon her for each day ... all those daily aspects of our lives we used to share, and all those things we used to count upon each other for support or whatever ... gone. This horrible disease just tears a relationship apart in so many ways. Fortunately, we do have long term health care insurance, so I'm very lucky compared to so many others dealing with this. And, after wiping up the bedroom and bathroom floor twice during the night, and pulling the sheets off the bed and throwing them and the towels I used to dry the floors into the wash, I was saying to myself that her admission into assisted living couldn't come soon enough. (She is on a room wait list.) And that's the worst part of this disease for me. From 46 years of only love to now having feelings of anger and frustration and sadness and resentment and, and, and ... that is so horrible for me and the cause of most of my tears now. Despite the greater financial security I have, as far as losing the wind beneath my wings ... I, too, feel that loss. Big-time.
Joan, I worked at a very nice HUD for people 62 and over. They charge 1/3 of whatever your income is. That was in 2001. I've been looking into a couple near NYC for myself. They usually have long waiting lists, but if there is some "crisis" in your life causing you to need an apartment, you will be bumped way up on the list. I don't know about FL, but if you are willing to move someplace else (like near your son) it wouldn't be as crowded with people in that age group. Do an internet search for HUD (sometimes called for elderly) and see what you come up with. I've found the managers are very helpful with information. I've decided to stay put, but I hope this is an option for you. Wishing you the very best and hope this helps. Sorry, knowing you, you would want to be at least near Sid. Hopefully there might be some nice ones in your area. The one I worked in was in one of the best neighborhoods.
Joan, just wanted to add, I'm pretty sure the 1/3 they charge you is after your medical expenses. And like apartments everywhere, some are better than others.
Joan - thank you for your comments. I also hurt for you. In our case one of the saddest things is that hubby's long term memory has faded a lot too - so he doesn't remember the memories of our courtship, wedding and years together (46 years). Visiting an assisted living facility to check it out today brought it into even clearer focus how tough this disease is on the spouse. Sending you big hugs.
I am with you in that we lost our home when my husband became ill with alzheimers and I couldn't do it on my own we moved to florida in a 55 + park and then my son found himself homeless we cant have him here so now we are looking at maybe a family park at least it would be a break for me if I could have daryl with us with all the stress I find my self throwing up when I spend too much time thinking about it joane I don't know where you are for money but you can buy a really cheap mobile in a lot of the 55+ parks in florida they wouldn't be wonderful but most in those parks would leave a little fixing up and the lot rents tend to be cheaper it might be worth looking into
I have been member for a while my computer messed up and I couldn't find username and password on top of that my old server was on there so I couldn't get in and change it I think I went under linda t with a space but heck I cant remember sometimes myself and I don't have alzheimers so there you have it I have put this on new members im sorry I wasn't prying just trying to give you a possibility