The thing about plants is that they need care. Or at least they do better if they get some care. And then with enough watering and feeding they may eventually flower.
And the thing about souls is they need care. Or at least they do better if they get some care. And then with enough watering and feeding they may eventually flower.
Even if they've been hurt. Even if they've been damaged. Even when it was a close thing.
Most plants draw nutrients from the soil through the water they soak up in the roots and then use light to create energy. Seeds have no light and push through the darkness trying to grow to break into the light. But they may lie dormant all winter like an acorn enduring until they can sense it's time to grow.
I can think of no better teacher than nature where whatever religious or philisophical beliefs we have the story of life is before us and shows us the way.
We are not important in and of ourselves. We are however truly a part of the chain of life and we are only here because since the beginning of time endless generations have had their lives in an unbroken chain to create you. That must be so.
And while we could stick our head out of that warmth and complain from the very first that life is too short and coming into it is hardly worthwhile, the truth is our only real choice is to try and make the most of it. The oldest living Olive trees are documented from the time of Christ. A male dragonfly may get 4 weeks. But every one has it's own unique story. Like the kinky duck trio that come every spring where one of the males lost it's foot and has been hopping ever since. That stump is a bit ragged now but it probably hardened up over time and the three of them are still together and still complain I never have enough corn (the female always eats first while the two males watch and then the injured male eats next - been that way for 5 years).
If we weren't supposed to see the stars the atomosphere would be opaque instead of transparent. That's a lot of places out there. We're in a huge universe on a rock nurtured by the radiation of a constant nuclear explosion some 93 million miles away. That's how this has been created.
And the light from that sunny warm day where Coco and Dado were in that special moment years ago is still streaming out into the universe at 186,000 miles a second because all moments everywhere that existed still exist and 3 1/2 years later that time where Coco and Dado where there will be arriving at the nearest star and anyone seeing that would be seeing it then as though it were now. That's how it's created.
If my life is valid then the moments of my life are valid and whether moments are in the past or in the future isn't the main criteria for meaning in life. Now is an unmeasurable concept. It's better to think of yourself as a surfer from the past into the future where at all moments we are engrossed in the now - where there actually isn't one. There are only travellers through time (one direction - good idea).
And on this night where half way around this rock it isn't night, one traveller is trying to distract another from their burdens. If just for a little while.
Coco, go outside on the first clear night and look at the sky. Pick a star you like that you're sure you can find again. Name that star. You know what to name it. It will always be there.
And finally about your troglodyte friends. Line them up. Put french mime paint on their faces. Give them berets and their striped outfits and white gloves. Make them put their hands up like they're pressed against a window. Now have them alternate squating and standing so each is at the opposite of the one next to them.
Ok. You're good. Leave them that way doing that for now.
I do so feel all the love and hugs, thank you so so much for your lovingkindness.
Wolf those ducks are just too precious, oh the stumpy foot one I just want to hug. He makes me think of what has transpired here in a way....his leg heals and he is on the mend despite his difficulties, then someone comes along with a stick and reopens the wound, and revels in it.
You know, if I hang on to hate and blame and anger, I will never grow, and do good things. There are simply some uncaring bad people in the world, nothing I can do to change that. I truly, truly, want to be a good lady, accept that I will have lousy grumpy days, but for most of them be a caring and helping individual. This journey with Dado has made me like myself a lot more, and to want to see a sparkle and a smile in the eyes of someone that I caused that to happen.
There are a few kinks in Dado's Adult Foster Home stay, that I am trying to iron out, namely that I am paying $420.00 a month that should not be. However, my VA social worker is helping me on that, in the meantime I will pay it. She told me on the phone the other day, Patty, we are all amazed at how much you do for him, and for US workers, that you keep on the research and paperwork and follow up. We are so proud of you. That was more than enough to make my heart burst with joy. The hiccup for uncaring people will not spoil that.
It is getting dark soon. I am going to look straight south, towards Tahiti, mark the date, and pick two sparkly stars for me and Dado.
Oh I am sorry I just HAD to go off course a bit here, a lovely bit of humor. (it is, a follow up to the ducks listed above) What would your ducks think of this Wolf, utter silliness...some local Hawaii news...
I'm sorry you're in the turmoil you talked about on the other thread Coco.
My ducks would say what they always say "WAAAA! WAAAA! WAAAA!"
I'm sure that son found the trial much more interesting after a half hour or so. The mind wanders trying to imagine how he was going to pass that to his father or how stuffed his cheeks must have been for security to catch on to his devious plan. My only thought is he must have been desperate for water. That would be like swallowing a mouthful of hay (or so I've been told).
There is no explanation for the man with the duck and the beer under his jacket. These are not the first things that cross most minds when showing up at a court appearance. I'm due in court. I'll pack my duck. We'll need something to drink. Wow.
I know it's really tough and the best thing I can think of saying is that in all honesty you don't sound as stressed as you did when you first came to the board. That's information I would want to hear even though it doesn't help you now. I would be reminding myself of the basic objectives to calm myself if I was faced with a maze of unforseeable outcomes because I would become extremely frustrated at times and that's what I use to calm myself.
The hardest thing is to tell when I'm tranced by it. I'm just walking through it all but I've lost context. If that happens I write down separate parts on separate pieces of paper and may look at them to see if I can make more sense. Such as what this one organization said summarized. And what these people say is the problem. Even a list of the separate problems I need to solve can help. When I lay those pieces of paper out in front of me and move them around I get thoughts and ideas.
It's not whether any certain way helps get a better mental/emotional grip - it's that we find some way to put a rudder down. They help no end with steering. I hope you get some real luck.
hey thanks Wolf, it made me think about my first posts on this board. I have kept it all in a diary, and oh yes, can see the changes in ME.
I AM getting weird little panic attacks now and then, something I never never had before. I am doing all the good things diet exercise breathing etc. and of course it helps. Also though it may sound a bit cosmic, when the anger and frustration toward others gets awful, I truly think LOVE, FORGIVE, and my new one, STAY AWAY...lol..
I almost totally freaked when I saw that we had no income deposited in our account. I mean HOW do you not...with all the rest, and now,,,they take my income . Ugh. Ah well that is another thread, and I am going Monday to the SS to fix it...
I ran the idea to a couple of friends and family members about later bringing Dado home. Yikes I got the word that they did not like that idea. Ok, not yet, but maybe, someday. Just need to iron out the stupid system.
Going to pick my sweetie up today and tell him about the two stars I picked out for us.
I laughed right out loud when I read the article Coco, thanks for the chuckle :)
Seeing ones only income not deposited in your account would cause anyone to have a mild (or large) panic attack! I do hope you get that all sorted out! Hard to believe how different each state is when handling these situations. ((hugs and strength))
Life is an amazing experience. I think if it transforms again before my eyes, I will simply pack a suitcase because there's no point getting settled in anywhere. It hit me that my Dianne was diagnosed before Jim's Kathyrn with the same EOAD. My SIL is here from San Fransisco visiting and she thinks I finally have some colour in my face and some animation. My nephew said the same thing two weeks ago. I can't imagine why because I'm still not doing anything.
I'm not doing anything physically but I have been very active mentally where in all honesty I understand that I go to my job or go into the gym and work at it every day. Anyone who has read my comments on this thread knows what I mean.
In the same way a person knows that if they start working out and keep at it their body will improve in it's physical shape, I have long believed that if I don't do a similar thing here mentally, I would not fully recover. To be clear Dianne wants me to have a good life. If I don't fight for that I will waste my life. And what we are both talking about is a healthy spirit and frame of mind just as we were when we were 'us'.
In this 'get into shape' program there are three parts:
1. Work at accepting what has happened to us. Work through the memories good and bad. Learn to accept the pain and loss which is the truth here and live with it.
2. Work at understanding myself fresh. Use honesty and empathy to get at the truths of myself. Work at understanding what matters, what I like, what I don't, what I want, and what I don't - all so that I improve my chances of inventing my new life in ways that are true to me. Push myself forward.
3. Measure. Measure in the same way everyone who works towards a goal measures their progress. I can answer every question because while recording is not the work, I do record so that I don't just measure my feelings about the facts, I have those facts recorded.
That might sound tiresome or artificial. In my mind this is too important and too powerful to do anything less.
So even though family thinks I'm doing better, I know I'm going down again. I'm not through my depressions. My memories are still evolving. Worse is yet to come. That's not their struggle - it's mine.
But I can come in and go out of bad or good feelings in a single stride now either way - and back again. It's cost me a stomach ulcer. I've had that before and so I'll have to go and see the doctor I haven't talked to since the diagnosis. I expect pain from pushing the envelope of time. It's not a real problem.
In comparison to learning to stop apologizing deep inside for surviving - it's nothing.
As always Wolf your thoughts are imbedded as true, and uplifting, despite the struggles. I did really absorb what you had written on another thread too, about this other persons way of handling grief. I don't want to be like him. And I am slowly letting go of the anger towards uncaring people, letting some go for good, and forgiving the ones that truly did mean well.
I personally am in a "zone", it is slow, and unmoving. As my finances are ok for a few more months, I have had NO inclination to go back to work, and likely will not go back to the same things I have done for almost 30 years. I cannot even look closely at my stash of dried gourds, beckoning to become bowls, candle holders, ornaments, etc., they hold no appeal to me right now and do not call out to me like they used to. It does not really feel like depression....though....maybe it is?
I do visit Dado most every day or at least every other. He is ok, and not. Now that he cannot walk and just sits in his wheelchair all day, I see that he is constantly shifting , trying to get comfortable. I get him to stand up, and hold on to me, and I stretch him and rub his back while I hold him from the front. He seems to like it briefly as he stands there for a few minutes. Then he fusses and it is time to sit him down again.
I do also, manage to keep my yard and house clean, my cats loved up, and paperwork and bills paid.
However, I am not sure if constantly isolating myself is good, and I am going to town this weekend to see a movie with a girlfriend. Kind of forcing myself really.
The life of Coco. Bland, but healthy and lucky to have a decent home and good food and a good car.
I haven't made any comments for a while as I'm just stuck in a rut, just like all of you poor souls ! My beloved wife has been away from our home since December/11 and it almost seems like she was never here in this home even though I am surrounded by memories of her. About a month ago, Holly fell/collapsed and was in the hospital for almost a week with cuts, etc. on her face and head and then this past weekend the same thing, luckily a NA was there and prevented a fall on Saturday and then on Sunday our daughter saved her Mom from another major fall (although Mom still hit the ground and was in the middle of a seizure for 2-3 minutes. She is now starting to take Valporic Acid while they wean her off from Seroquel and Zprexia. Oh how I hate the reality of this dreaded AD, as I attend monthly support meetings with the Alzheimer Society, listening to other spouses tell their tale of despair. It is almost like all of us are in some sort of time machine as we bounce around from our former lives with our spouses to this stark reality of this sadness ! I have often said at different meetings that as much as I love and care for my Holly that if she died tomorrow it would be a blessing. But afterwards I feel so sad that I would say such a thing, because as I'm looking to the end of not only her suffering, but all of ours it is so real. I can already see and sense the sadness in our kids and just like all of you it just hurts. At least for the moment I can still visit her, feed her, shower her, talk to her, read to her, watch TV with her, walk with her, etc., knowing full well whats right around the corner. She is already saying "where's my husband ?", even though I'm right there. Then she's somewhat ok ( or just the new normal ) Please Dear Lord have mercy on all our loved one's and ourselves, help each one of us learn acceptance
My wife fell often. Now she can't walk. I decided to let her keep falling and got no arguments from the extensive staff. She often had a bruise but she was still shuffling around and interacting physically with reality. I have no regrets about that decision.
I am stuck in a rut too. The sense of overbearing saddness is the true reality and the true expression of the love lost. I hate the reality of this disease too. It's the only sane thing to feel.
I found solace in re-learning to appreciate the simplest things with a true heart. Some of them I had to fight through tears to get to. Eventually eating our favourite icecream wasn't mostly about her not having it - it was that I was still here having it for both. I call that reclaiming things.
I hope it feels good to speak here. It's one more avenue and connection to fellow warriors (both sexes).
Jeff falls a lot too Wolf. There's not much that can be done about it. He's got a nice shiner around his left eye this morning. Eventually he will degenerate into not being mobile, and that will solve the problem in a manner of speaking. Alternatively, he will bump his head hard enough to be too impaired to stand up anymore. As I said, not much can be done. You just have to create as safe a zone as can be done, and let life roll.
Koda, I am truly sorry for the pain you are experiencing. My husband has been in the NH for over four years now. If it helps at all, the first two years were the hardest. I went into full blown mourning and I think that really helped me emotionally. I am no longer consumed in the grief. Now our daily visits bring great joy to my life. I no longer mourn for what was lost and instead treasure every little glimpse of "My Lynn". To see him smile, lights my whole world.
I know I am blessed in that even in late stage Lynn does still know me on some levels and is able to not only talk but express his love for me. I credit that to the miracle of Marinol and my daily visit.
I do know some of you get no response from your spouse, I remember that pain, and I am truly sorry.
As sad as it is when they can no longer walk, it is much "easier" in that there isn't that constant risk of falls. I hope the new medicine will help your wife.
Coco, so good to hear from you ♥ No isolation isn't a great thing, but sometimes just what we need while we lick our wounds and work our way back to us. I am sorry to hear of Dado's decline. When Lynn could still stand I did just as you described, rubbing his back and legs to bring him comfort. Lynn has an awesome cushion that helps with the comfort level, do they have one for Dado?
This is the one Lynn has, they tell me it is the best there is... http://therohogroup.com/products/seat%20cushions/index.jsp Restorative and Physical therapy worked to fit the best one for Lynn's needs. They are expensive, but maybe your insurance will cover the cost. Hope it helps.
I googled the site and found a medical store on this island that may have those cushions Nikki! Thanks so much I hope I can find one I don't care what it costs. It just pains me to see him constantly shifting. I also heard that sheepskin works well.
I have to agree with Mary. The sheepskin really did nothing for Lynn, though it does seem to comfort my aging dog. Also save yourself some money and don't buy the gel cushions. Though they are good, they just aren't enough for someone wheelchair bound. The Roho's are designed for this very reason. Between this cushion and his Turn Select bed, he hasn't had one skin breakdown in over 3 year years of being bed/chair- bound.
In searching for some tiny plants for my terrarium, I found out they no longer call them terrariums, but "fairy gardens". I had to laugh right out loud at the marketing genius that came up with this. I put a little pathway and bench in my terrarium years ago, had I thought to call it a fairy garden I could be rich today! lol
I was not impressed with the name change, until I discovered they also have a whole line of things for outside. Including fairy doors and windows that you attach to your tree. Genius! I am not a big fairy fan, but I do like gnomes. So, for my upcoming birthday I have asked my immediate family to help me build a "gnome home" in my front yard. Complete with doors and window in the cluster of trees.
Now I know that seems a bit corny, but you know what? I don't care. It makes me smile and I find I really enjoy feeling happy. :D
Nikki I met a kind old gentleman at an Alzheimers support group in the town of Volcano, about 45 miles from here. My first time to that group, it was lovely about 8 of us and the social worker.
He called me the other day and said he has one of those snazzy pillows you talked about, also said he paid $100 or so. His name is Phranque, (lol), and we are going to meet for coffee tomorrow and do the deal, pass on the pillow to me. I said I was thinking about buying one at the shop in Hilo, and he said check this one out first. (His wife died 3 weeks ago and he does not need it) It is a beautiful drive to Volcano so that is something to look forward to.
When I visited Dado today I just sat at his place with him for about two hours. I used to take him for a ride but that is getting too challenging now. We watched the NBA playoffs, he never makes any reaction or sound but seems to be ok, except for the constant shifting in his wheelchair trying to get comfortable. I was thinking of you then Nikki, about the things you do with Lynn during your visits.
Then, I put his coloring book and crayons in front of him, as he has been liking that for about 4 months. He takes one color and furiously colors away for sometimes an hour or more. Alas, I believe his coloring days are over, for now. He takes the crayon, and bites it in to smaller and smaller pieces. He does not seem to swallow it. I took away the first crayon, telling him "Please don't bite it", and of course he started on the second color.
I said "Dado stop don't eat that" and took it away. Then, the biggest tears came dropping down his cheeks, just like he was a little small boy and his Mom was yelling at him. It was so sad. I had to have a wee cry too.
Nikki I am SO ENAMORED about your terrarium, I GET IT! And I like gnomes too. When we used to live in Hana Maui at Dado's old house by the bay, there was a legend that the "Menehune trail" went right by the side of his property, the old ancient trail . I used to wake up at night and see a glow down there, and I knew in some way they were there. Dado's family are short people and lots of reference to the little people. And , I am born on St. Patrick's Day, look very Irish, have stubby strong little legs, and yes, I am part Menuhune, part Leprechaun-know as a Lepahune.( pronounced lepa-hooney)
I could go on and on...enjoy your precious garden. Aloha everyone.
Ahhh Coco, one would have to be made of stone to not have cried. I got all teary-eyed just reading it.... I posted on another thread today (Montessori & dementia) a link to one of the stores I purchase many of Lynn's items from. I am frugal so I am always shopping for the best deals. What did Dado use to do for a living? Did he enjoy music? What were his hobbies? These are good starting points to try to figure out what could stimulate and bring happiness to Dado.
You know the first time I held a beach ball in my hand, a feeling of sadness overcame me. Was I really going to buy this toy to try to entertain my husband? The first time I gently tossed it to him and he let out that contagious giggle of his while he caught it, and then that smart ass smirk when he threw it back to me, changed how I look upon these things. It was just like in that movie Awakenings. So I of course call these Awakenings moments. It engages him, it makes him happy, that is my goal.
Music I have found is amazing therapy. Not just for Lynn, but even those that seem totally lost. As often as I see this miracle of them engaging, it never ceases to awe me. I have purchased Maracas for Lynn and some of the other residents as well. What a show they put on! Lynn get's so intent on keeping the beat, it moves me deeply.
Just keep trying Coco, you will find something to engage him. If you want, feel free to email me and we can talk about what level you think Dado is, and what might work best for him. Just please let me know you emailed as I admit, I am just horrible about checking it.
I am very happy to hear you found Dado a pillow! I can well imagine how it rips at your heart to see him shifting like that. Lynn's was almost 400! So if you can find a good used one that would be awesome. I hope it brings comfort to Dado and peace to you ♥
I was smiling widely when I got to your part about the Menehune trail. I love these old tales and could listen to them all day :D When I finish my "gnome homes" I will share a picture :D
Nikki I googled that page on the cushions and there were a bunch listed on there. I would like to know which one you recommend. It looks like they all have air pockets or gel... the one I picked up today is just a fleece one and I want a really good one.
Hi Coco, I took a look at both links you sent. I can't believe how reasonable they are on ebay! Lynn started out with the high profile Roho I do remember that. He just got a new one a few months ago because they said it was better for him. (They provide them at no extra cost) I just called PT at the nursing home and they suggest a good cushion for most is the high profile. With that information I feel comfortable suggesting you get the high profile one. I noticed many on ebay that had the cover and pump included, that would be the way to go. You are such a sweetheart and a blessing to your Dado, I know this will bring him more comfort ((Hugs))
I ordered from Allegra Medical Nikki, the high profile one. It was just under $400 with shipping.. I decided not to go with EBay as I want to make sure it is brand new. Hope the size is right!! The wheelchair measures 17and a half by 15 and a half, they recommended a 18 x 16. It will take over a week to get here...
thanks for all your help. You know, the VA is supposed to be sending some kind of cushion, however I expect it WILL NOT be one of these as it is free. I will use it for me lol.
Coco--years ago (in my other life) Steve and I drove the road to Hana from Maui and back. I will always remember that day, how special it was, and the black sand beaches. Thanks for bringing back this sweet memory.
We live on the BIg Island since 2005 MarilynMD, and Dado was born and raised in Hana. I myself lived there for almost 30 years! What a incredible experience. I learned so much about the culture and the beauty is indescribable. My coconut candy recipe that I have made a living off for many years, is the secret "Aunty's recipe" from Hana Highway. So glad you both got to experience it.
Thanks again on the cushion advice Nikki. I can hardly wait to see how it helps. Now I am trying to come up with an invention for a foot stool. His wheelchair is an old one they use, though good. No foot rest. Right now I just have a stool for him but it is light and he can kick it around. I was envisioning an heavy box type thing, with levels where he can put his feet.
I am truly grateful for where Dado lives, despite the fact that I have to cough up the $418 extra a month over the Medicaid. He is now approved for SS disability and there is a chance it may now be covered. Either way, I am finally waking up in the morning without a heaviness in my chest, and a deep worry. Those people are so beautiful it is such a family scene. Yesterday when I visited, they sent me home with some wild smoked pork, from a pig that was caught right in our subdivision. Now I am not a big meat eater, but this is sooo lean and as there are too many pigs it is good to wean down the population. The son of the husband/wife team had just caught it, and oh man did that taste good with rice and veges. They cut it up into small pieces, soak it in kind of a sweet Chinese sauce, and smoke the heck out of it. Now that I live alone I rarely eat meat so it was a treat!
I was visiting my friend who lost her 56 year old husband to cancer two months ago. We were talking about it all and she started crying hard because she misses him so much and sobbed she'll never speak to him again.
It broke my dam and I started crying so hard trying to say something her son rushed over to help because it looked like I was having a fit he said. It took me a minute to say the thing that struck me so hard.
"If I had just five minutes with her". I have never dared to hope anything in this disease and listening to poor Kathy never being able to speak to Scott again put the thought in my head I had never dared dream of. That we might have just five minutes to speak to each other.
I know the first thing she would say. That she was so sorry for getting this stupid disease. I have no idea what I would say. Thinking afterwards I realize it's not a good idea. She would see what this has done to me. All she would have to do is look at my face and she'd know it's hollowed me out from the inside like a windswept barn. Fighting to stand. Not sure why.
Having written this I suddenly do know what I would say. It's worth it. We saved a lot of time over the decades where I was always the idea person and all she had to do was look at my face and she always knew whether I was just talking or serious. It's like she could see my soul. She would know that I was completely serious that it's worth it. I have no regrets except not having her anymore.
Finding my own life is a slow, laborious business. Finding my emotions and if I can find those, my hopes is still just a dream or a nightmare - the jury's out. If I can't maybe I can rent someone else's and if I can't do that, I'm just going to pick something and do it. I'm not actually worried about having things to do. I'm worried about how I feel inside.
The truth is I know that as long people try somewhat, time has helped everyone I've known who had a huge blow. And I'm still inside having my huge blow.
((Wolf)) I have to ask, did you feel better after the dam broke? I hope it was a release for you. I am glad through the intense pain you can still see and feel "it's worth it".. it is, very much so.
Allow yourself the time you need dear man, it is hard being trapped in that "huge blow". We have talked about reclaiming moments on this site for several years, and I noticed of late you too are having some of these. I pray you have more, it helps the healing more than anything. At least for me it has.
As I often say, I am no longer crippled by the immense grief of it all, but I do still have a limp. Perhaps I always will? But I am ok with that. Not all the changes to my "self" have been bad, I have emerged a stronger, yet softer, version of the old me. Even with Lynn late stage, even with my impending surgery, still I have such peace in my heart, gratitude for all we do still have and true happiness is my life. This is what I pray for you Wolf, for all of you ♥
I have been very choked up after reading your comments Wolf. And I think that most of us would like that five minutes. Lately I find that I cannot remember Dado "before", even though it has only been two and a half years. I do remember his actions, just not his personality. I see in your posts that you feel "blank" if you don't mind me putting it that way, of course only some of the time. Personally I guess that is a good word for ME, it feels kind of safe though irritating.
Though your journey has been so much longer than mine Nikki, I also see a shield around you, and I am so sad to know that one day it will crack, please forgive me if that sounds awful. But you will emerge, from your cocoon, to the most beautiful creature on God's earth. Your love for Lynn has made my love for Dado even stronger, if that is possible. Thank you for being in our lives. You give me so much hope.
I missed seeing him for 3 days and went yesterday, and I swear, in that short of time he was even more advanced. He seemed like he hardly knew me, though I know, absolutely know, that he does.
I would say, "Dado I don't ever regret one moment we have had together, you are the best thing that has ever happened to me, and continue to be so" And I hope he would say, "My Patty, I know you are having a hard time, I know you are worried about me and sad, and I know, that there has never been anyone that cares for me like you do. Patty, my prayer is that you will never forget me, and that your life will still find happiness, and that you will be ok financially. I love you so much, and our kitties too"
And writing this, the blankness lifts for a moment, and the tears feel good.
Coco, my heart breaks for you... just reading your words, I can almost feel the impact of your pain. You know your Dado better than anyone, when he was well and you were suffering, what did he do to comfort you? Remember that comfort and let it help ease your pain. You KNOW he still knows you, then know too dear Coco that if he could he would say those sweet words to you. He is unable to, but his heart still loves you.. hold onto that tightly ((hugs))
I did at one time have a mighty shield around me Coco. It cracked long ago, it didn't just crack it shattered into millions of pieces. In my moments of deepest grief, I often found myself on the floor sobbing for all I was worth, just as shattered, feeling overwhelmed and wondering how I could possibly put all those pieces of my heart, of me, back together again. It wasn't just heartbreaking, it was "Nikki breaking"
I don't believe time alone heals one damn thing. I believe more what Rose Kennedy said "It has been said, 'time heals all wounds.' I do not agree. The wounds remain. In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens. But it is never gone.”
I have had more time for the wounds to heal, they are still there, but they do not sting as sharply. Though it is still heartbreaking, it is no longer Nikki breaking.
As you eloquently stated, I have already emerged from my cocoon. There is heartache still, and when God calls Lynn Home, there will be more. But I am stronger now. Alzheimer's has taken all it can from me. I have reclaimed what is most important to me, my love for Lynn and his love for me. Everything else pales in comparison.
Coco, I wasn't going to share this here at Joan's, because it is so personal but also because I almost feel guilty have these precious moments with Lynn, when I know so many wish they could have them as well. But perhaps it will lift your spirits and bring you hope. Without a doubt I believe with all my heart they do still know us.......
This is what I shared on Facebook...
"Lynn rarely says my name, when he does, well.. there are no words to describe what it does to me. When he is frightened or needs help he will call out to me by name, and often he will tell people I am his wife. So I know, somewhere inside he still knows me.
We have lost a few of our spouse in our little Alzheimer's group recently, and as you can imagine it breaks my heart and makes me hold onto Lynn just a little bit tighter.
I usually stay until I tuck Lynn in for his afternoon nap and know he is sleeping. Today I thought for sure he was asleep when as I always do, I leaned in to kiss his forehead and tell him I love him.
Today I felt the need to also whisper in his ear, ........please don't forget me..........
With eyes still closed he softly said "I know you Nikki" *gasp*
He then opened his eyes, looked intently into mine and with great passion said " And I love you, so very, very much"
All thoughts of leaving left my mind as I laid and cuddled with him. Fighting tears, but so very grateful for this precious moment. Thank you God! ...... If he never says my name again, today will be enough to sustain me for the rest of my life. *tears*
Nikki, thank you for sharing that precious moment with us. Although it was your moment with your husband, I felt the beauty in it too and it lifted my heart for a bit. It also reminded me that all is not lost, now that my husband is in a Memory Care facility. I can still hope to share beautiful moments with him. I needed that reminder today.
I believe some things we experience are so powerful that either the mind won't let the body forget or the body won't let the mind forget. For me, it is within three weeks of my husband's death, which was preceeded by hospitalization and then a brief stay in a rehab hospital.
Even if I had no calendar or no way to count the days my mind and body know this time is here and this anniversary is approaching.
Nikki, you said: "When he is frightened he will call out to me by name and will often tell people I am his wife."
The day he arrived at the ALF was a "ball of confusion". His transport was about six hours early and though the room was already furnished I was still bringing in art and photos, diplomas, etc: this following Hospice's advice to hopefully aid in his orientation. (In the rehab hospital as well as the general hospital, no personal items were permitted.)
I was told he had arrived and he was parked in his wheelchair in the living area. Within just a few minutes I heard him calling out, yelling really, my name and "where is my wife?" over and over again. I thought that he was going into a rage. I had understood that he was angry with me for a very long time, that he hated me because he saw me as taking over his life.
So, Nikki, your post causes me to think that maybe he was frightened. And now I am thinking that maybe he was frightened for a long time. I'm kind of getting overwhelmed here but I want to say thank you so much for giving me this perspective.
Fiona, I am glad it lifted your heart ♥ I believe there will be special moments for you too. I am always quick to credit the Marinol, because it did make such a difference and it has helped him gain back 35 pounds. But his new doctor believes the main reason he is still so responsive is because I have fought so hard to keep him engaged.
This doctor is very involved with Hospice as well. He said time and time again he can walk into a facility and know just from looking at the residents who has daily visitors and who doesn't. WOW! That is a profound statement. As much as hope sometimes hurts, it is something I refuse to give up on. Not hope for a cure, it is too late for that... but there is always hope that we can engage them. I remember clearly the time Lynn was so lost to me, hardly able to respond or talk at all. But always, with enough time and interaction, he was eventually able to put voice to his thoughts and tell me "I love you" No greater reward... I hope you have beautiful moments ((Fiona))
Abby, I do not mean to compound your confusion, but it has been said that dementia victims often lash out at those they love the most, the one they feel most comfortable with. As you know at home, we too went through a period of time when I would have sworn Lynn hated my guts. It seemed I was his mortal enemy.
He was both physically and verbally abusive. Now I KNOW it was the disease, that my husband who before treated me as his princess, who truly would have taken a bullet for me, simply could not help what was happening to him. But that knowledge brings very little comfort to our broken hearts.
I do believe these behaviors were not only "part of the disease" but also because the poor man knew he was losing his mind and he was frightened. And here I was trying to help him with his daily care needs.. and I imagine it was very difficult for this once so strong and proud man to accept. Even then he had moments of clarity, and in those moments I will never forget the stark terror I saw reflected in his eyes.
This is why I now have so much peace in my heart. I curse Alzheimer's for all it has taken, but I am also grateful for the one blessing it brings... the eventual peaceful world our loved ones are trapped in. For Lynn his world is a happy place and I am so grateful for that!
But yes when he is frightened, or in pain (like last time with the severe constipation) He to this day will call out to me by name. Somewhere inside, he still knows that I am there for him, just as I always have been.
It would be my guess Abby that no, your DH was not going into a rage. He was being transferred, he was in a strange place, and he was reaching back into his heart, where he found you, and called out for you by name. I hope that brings peace and not more hurt.
What breaks my heart for you Abby, is I can see in you, where I was before the love came back after placement. I have had four years of peaceful, serene, happy moments to help heal my broken heart. You were robbed of this, you didn't get any peace, or time to adjust...... and I am so sorry. It must still hurt a great deal.... ((hugs))
You are and always have been such a comfort to me; you've given me support, understanding, and solace.
You are certainly a good-hearted woman. I don't know how I let this last post get away from me for the last few days! Everthing you said means so much.
It's taken a couple of weeks to get my head around this....I went to see the geri-psch for hubby a couple of weeks ago and her comment to me it was time for me to start looking into residential care for him. Now I knew this day would come but when she said the words I felt like I would vomit. What a punch in the stomach.....I know he is fading but to my mind I didn't think he was that far along. Also his aggression has a big inpact on being place, they are worried I'm going to get really hurt. But still the idea that after a long full life this is where you end up. This is how it ends.... Sucks!!!
It is hard, we know. But to have a doctor, with an objective viewpoint, say that it's time, then it's time. I think that you will find it easier once the decision is made and that sooner is better than later.
Amber, I know how you feel. When the neurologist said the same thing I felt the same way. Even though I had started taking steps to find an ALF and I knew she was going to make that suggestion.
Amber, I know just how you feel. Our Dr. has been telling me for the past couple months that it was time to place Sonny, but I couldn't bring myself to finalize it. I did look into places and had a few favorites,but our Son wanted me to get live in help,which the Dr. was against,thought it would still be too stressful for me.But 3 weeks ago,Sonny was admitted to hospital for a bleeding ulcer and was in no condition to come back home,actually it was a relief, I didn't have to make the final decision and our son had to agree to place him. He is in a NH a few miles away,gets therapy to get his walking back and feed himself.Does not seem to be fighting against being there. Please do not feel badly that you have to place him,it will be the best thing for both of you. Good luck!
Amber hang on, and I hope there is a good place for him. You will be allright, and he will too. I hope you are lucky enough like me to have somewhere really close.
Nikki what a beautiful post you shared about Lynn remembering you. So wonderful. Now when I leave Dado each time, I whisper in his ear., please don't forget your wife Patty. The other day when the caregiver said to him, who is that when I arrived, Dado said, "the lady" ) :
I almost didn't share it, that was May 10th, I don't think I will ever forget that day. I hope not ♥ I was surprised to find out earlier this week from the LNA's, that when I am not there Lynn often asks for me, by both "my wife" and "Nikki". I wonder if that is the same for many of us who wonder if our loved ones remember us? Like you, I try not to dwell too much on what is going on inside is poor brain. He is happy, he is loving, he lights up when he sees me... it just has to be enough.
I am a bit out of sorts. The nursing home has decided to implement a new feeding process at lunch time. They are closing the wonderful sunroom that Lynn usually eats in because they are going to try the new tools with only 6 patients and want the room quiet. I rallied against this because Lynn is doing just amazing and I think this could cause a setback.
I moved him to the other end of the nursing home a few months ago for two main reasons. #1 it was too damn hot on the other end and # 2 so that Lynn could dine in the sunroom. He despised the other dinning room so I would feed him in his room. He was eating well, but it was still a struggle for me to get him to stay interested. It took me an hour on average to feed him a meal.
The sunroom has huge windows that overlook a garden and a fairly busy road. Lynn just LOVES to look out that window. Every time a truck goes by he exclaims excitedly about it's size and often it's color. It is something to see! There is also a huge flag that he loves to watch wave in the winds. With these pleasant distractions he eats his entire meal in about 15 minutes! It was such a relief of stress to have him eating so well.
Though I did protest loudly, they closed the sunroom for lunch.... I am perhaps getting too cynical, but it angers me because I believe the reason behind the new program is not about bettering the resident's life, but about being able to charge more per resident for this restorative feeding. I often feel they depend on me and other spouses who do come in daily to feed their spouse. If we weren't there they would have to have more aides on to feed all the residents.
At any rate, back to why I am feeling out of sorts...I have decided I would not subject myself to trying to feed him in his room again. The sunroom will be open for dinner so I have opted to go in then. I go in about 4:00 and stay trough dinner and tuck him in for the night. Where I have gone in often twice a day, I have never not gone in for lunch. It is SO odd having free time during the day! I haven't "taken a day off" unless I was having surgery or was really sick in over 4 years!
Oh Nikki, how frustrating! It's discouraging when something is definitely working & then it's taken away. I know how you feel not going in like you used to. I haven't been in to see Tom in almost 2 weeks. I went out of town for the Memorial Day weekend & I got sick while I was away (a bad cold that just won't go away). The doctor says that I should wait until Thursday or Friday to go see him. He also needs to be fed now & I usually go in at lunchtime or dinner time to feed him. Let us know how Lynn is doing with this new turn of events & give him a hug from me! <3