Today's blog addresses the ability or NOT to be happy in the midst of this Alzheimer journey. I invite you to log onto the home page - www.thealzheimerspouse.com- and read it, and post comments here.
Oh, for heaven's sake. Tell the people who are telling you to "Get over it" to get a life of their own. Of all the mean, nasty and totally useless things to say to anyone who is suffering!!!
OK, now that I've got that over with. I'm not suffering as much as Joan is. I had some bad times when my husband was so depressed last winter. I had some really bad times before I understood that it was the disease that was pushing him to isolate us. I had some really bad times when I decided to get angry instead and begin to make a life for me even if I couldn't make one for US.
So can you be happy even when your husband has dementia? Yes.
I started by logging the nice things I did for myself. I read. I went on my forums. I played with Photoshop and made scrapbook pages. I talked to my daughter over the phone, or she and her family came and visited. I got out my knitting needles and knit myself a triangle shawl, which was so much fun to wear. I did puzzles. I wrote letters to my pen pals. I bought myself a new book or a new magazine. I talked to a next door neighbor face to face. I went to the library. Etc. Little things. But I paid attention and it helped divide the fog of depression.
I decided it was OK for me to be happy some of the time, most of the time. It wasn't necessary for me to be miserable all the time because my husband was sick. I'd been through months of him dying twice before. 6 bypasses and 3 cancer surgeries later, he started to get better. 14 years later he died multiple times after a bad accident and they put a pacemaker into him and it looked like he was getting better for quite a long time.
This time he won't get better, but we do have our good days and even our good weeks. It is OK to notice that this is a good day and a good week.
We need to give ourselves permission to be happy some of the time or we won't survive this disease and get to the AFTER. I keep thinking about the two caregivers on THE FORGETTING who died before their LOs. In one case the LO had to be in the last weeks of life. He daughters could no longer wake her up. And her husband died FIRST, leaving their children to deal with losing both parents to this horrible disease.
Obviously you aren't going to be happy during the crisis periods, and this disease provides altogether too many crisis periods. But we all need to give ourselves permission to be happy some of the time. We need to give ourselves permission to live some of the time. Or the disease wins.
I think that is one of the lessons that we, the caregivers and the patients both, need to learn. Life is full of lessons. This is one of them.
I'm with Starling. I have been trying to do what I need to do for my own sanity. I went back to quilting and plan to start going to my quilt group meetings again now that fall is coming. I have done some things around the house that make me happy, and I'm taking trips with him again. always with someone, ,our son or daughter or friends who I trust to be aware. I tried to get him to go to a day care 2 days a week but he refuses, so I'm just going to have to continue to live. I am a naturally happy person, however, when he was on pain killers, I cried a lot because he was so nasty. I can appreciate how others are suffering. right now, he's not in terrible shape. Who knows how long this will last, but I'll continue to do my best. As I said on another thread, We just came back from Alaska, and are headed for Florida an another cruise in january. He doesn't remember we went to alaska with our family, but I do, and I took plenty of photos. We are still alive and altho he is not the man he was, he is still the man I love.
Hi Joan, Today’s question is one of the best you’ve ever asked. I agree with Starling’s words. It is within our life which we must find our own happiness. I find it difficult to read the words I have just written – but they are true. My husband’s AD has brought much sadness into my life as you well know, and yes I take anti-depressants every day. It is up to me to find my place in this world and to decide if I want to be happy or sad. I choose to try to be happy. Is it easy, no, it is not? If I choose to not be happy – I will find myself in such a deep hole I will never be able to crawl out. I will not be able to go to the hospital daily to bring a little sunshine into his life. I feed him lunch and we go out for walks – little things that we both enjoy. Soon there will come a time when I can no longer do this – but I will face that challenge when I come to it. I have learned to live in the NOW and not try to look into the future. His AD had taught me lesions I never realized I would have to learn. I have had to learn patience – something I never had in the past. I have learned to appreciate the little things life has to offer – a simple smile when he sees me, a kiss when I leave the hospital. Without this my life would be empty. I am glad I still have this and that I am able to bring a little happiness into his life. You still have much more with Sid. You are able to travel, if you choose, you go out to dinner and spend happy times together. Share what time you still have and try to enjoy every moment – one day it will all be gone. Arguing about the little things is useless – let it go. I thought Ronnie and I were the happiest couple around – no one could understand my depression and discomfort – no one knew what I was dealing with on a daily basis. I had no one to share this with. His daughters live far away and both had lives of their own. I didn’t want to burden my daughters with the truth that my world was falling apart. Friends drifted away because they didn’t understand what was happening to Ron. I didn’t know who to deal with others and to explain – I was simply in denial and I thought things would be ok if I gave it enough time. Time has taught me differently. Eight years is a long time of 24/7, but I have learned that life is what you make of it. No one else can do it for you - if you choose to let AD beat you it will – I chose to let it make me stronger and more resilient. I will not allow it to control my life – my life is the only thing WE have left and it is up to me to do the best I can with the cards I have been dealt. Sure I could turn away and throw my hands in the air, saying “To hell with it all” or I can say “I will try to do the best I can.” I think your strength and wisdom will grow with Sid’s AD. As you lose more of him you will gain more of yourself. You are still a team; you still have a partnership with Sid as I do with Ron. It is just different – I have been told change is good. I use to disagree – but now I have learned that change is good it is accepting the change and making the most of what you have been given. I use to argue that I wanted sameness – I wanted continuity - but I have learned we need change to survive. If we refuse to change we will stagnate. Try to enjoy what you have today – because tomorrow it may no longer be available to you. Roll with the punches and you will carry fewer scars tomorrow. As I write these words to you I am even surprising myself. I had no idea the lessons I had learned and am still learning today. Take each day that you are given and make the most of what you have. That sounds a lot simpler than it really is – but I think you get the general idea. You have been given so much, you have shared so much with Sid over the years and it sounds like you both still have a lot of life together. Is it what you thought it would be? No – but you are both still alive, relatively healthy, you live in a beautiful part of the country – what more could you want. Yes, I know – a healthy happy husband. Something good will one day come from all this. What will it be?? No one knows what tomorrow holds – all we have it today to enjoy and to make it all it can be, Be well and please stay in touch – I am as near as the phone or the computer. Much love to all. Ruth
I wish i could feel like the rest of you, and move on with things /people that make me happy again. but i am just too caught up in the pain of watching my DH die a slow death and feeling powerless to do anything about it. the only way i am going to get over this is after the fact and hes gone and my role of caregiving is over. i am not a depressive type person normally and can see the humour in lots of daily struggles so i tolerate my life as best as possible for now but i can never move on or motivate myself while my DH is still in this world. he doesnt have alot of joys these days and i guess i am of the feelings that i am unable to enjoy only as much as he can at this point. i have said it before, symbiosis. attached at the umbical cord and its got me wrapped about my mind and heart. til its lifted i doubt i will be doing any more than i am doing now. i know i should feel differently but for now thats the way it is. maybe i can muster some changes soon. divvi
Divvi-I disagree with you. You say "I know I should feel differently". Your feelings are very valid-they are what they are. You appear well grounded and doing the best you can. Please don't put an extra burden on yourself.
" Because my husband is more high functioning than many others with the disease, you would think we would be better at this than we are. But when Alzheimer’s Disease sneaks into the brain and takes away the memory, and even part of the reasoning and comprehension of our spouses, it changes their personality, their ability to relate to us on the same level as before, and alters the marital relationship forever. When you’ve had the best, as I feel we were lucky enough to have experienced, it is very difficult to adjust to the total change." I believe this is the main detriment to your quest to achieve happiness in the midst of Sid's illness. Because he is high functioning and able to reason and comprehend somewhat, you can still maintain communication with him and you are living with one foot in the Alzheimer world and one foot in the world you have been forcefully thrust from. The definition of happiness is great pleasure or joy. I don't think any spouse can sustain happiness for long but perhaps we can obtain a measure of contentment. I like the comment by Starling that we need to give ourselves permission to be happy some of the time. We can look foe those moments of joy and try to revel in them, tuck them away in our hearts to bring out at times of sadness. I speak as one who has gone through the many stages of ALzheimer's and now awaiting the end of the journey. I didn't think I would ever attain any peace, and grieved constantly for once was and was no more.
I found a Chinese proverb which states: Happiness is like a sunbeam, which the least shadow intercepts, while adversity is often as the rain of spring. (happiness is fleeting so we have to grab on to it whenever we are fortunate to encounter it. ) Also, many philosophers have written in this vein...I am more and more convinced that our happiness or unhappiness depends far more on the way we meet the events of life, than on the nature of those events themselves. (Baron Alexander von Humboldt)
Finally, I for one, have found this about my unhappiness and suffering: Suffering without understanding in this life is a heap worse than suffering when you have at least the grain of an idea what its all for (Mary Ellen Chase) I still don't have any idea why it is some human's destiny to end their lives like we are doing and I have many arguments with God about this and I think this contributes to our difficulty in experiencing happiness but i am determined to live out my destiny with as much contentment and "moments of joy" as I am capable of.
You are a thinking, intelligent, sensitive woman and this makes your present circumstances more miserable as you attempt to find meaning in all this. I have confidence you will endure and in the process will help many others to endure also. I hope I haven't been overbearing and pedantic in my offering, I just want to give you something to help you in your unhappiness.
Yes, Happiness is possible. Just not now. If my husband of 50 years knew what is happening and has happened to himself, he would not be happy. If he isn't happy, I'm not happy. Maybe when he is no longer living in this nothingness (is there such a word) I can resume life and maybe be happy knowing he is no longer unhappy.
divvi, I have to admit, you are saying just how I have felt, and I am forcing myself to get back into the things I enjoy. If you are not ready to do that, then don't. Maybe our Dhs are in different places. Mine sleeps most of the time, and I stayed in the house watching him sleep, and not doing anything because I didn't want to leave him alone. Well, then we have 2 depressed people. and yes, I also take Zoloft every day, because I was crying all the time. For my sanity and health, i have decided to do what I can to make myself happy. two yrs ago, when I realized he was going downhill, I cancelled a cruise that would have taken us to Egypt and Crete, two places he always wanted to go, because He wouldn't remember we had been there, or even where we were each day. I was wrong to cancel. Even if he doesn't know where we are, he enjoys being there and doing something we've always enjoyed and then he looks at the photos. So he asks me 8 times a day where we are, but, you know, I tell him. and he asks me whether we are home, or somewhere else, so what's the difference. But, we each have to decide for ourselves what we have the strength for at a given time.
I was happy this weekend. We went bowling with both children and their families. 6 adults and 4 children + the new baby. One grandson was on a visitation with his mom and couldn't be there. We all had a really great time. Yes, I was happy. DH did well for the first 2 hours and then the two 4-year-olds started getting on his nerves.
As for happy in my relationship, I would say probably not. If I wasn't "on guard" so much, may be I could be "happier." I just can't let down my guard very much. About the time you start to enjoy the moment, something sets him off and it takes it all away. I don't mind so much the ranting but the anger hits me the worst. It makes me feel sad. Sad for me, for him, sad for what we are missing out on, sad for not being able to stay happy after a happy moment.
I guess I'm fortunate. My wife often tells me that she wants me to be happy. I reply that I will be happy if she is, so she smiles and seems happy. She enjoys looking at clouds and trees. She likes to go places with me. This past weekend we went to one of the major resorts in Maine so I could accept an award from the Maine Medical Association to the Free Medical Clinic of which I am Medical Director. My wife seemed to enjoy the dinner and ceremonies. Then on the way home we stopped in to see some friends we only get to see once or twice a year. We ended up spending all afternoon with them. My wife seemed to enjoy being in their company, and it gave me someone to talk to about events of the world.
Am I happy? NO, I am not happy with this horrible disease that is taking my wife away from me. But we are still able to enjoy each other's company and do some fun things together. Last night she said YES to getting tickets for the "Capital Steps" when they are here right after the election. I try to enjoy the things we can still do, and ignore the problems (not easy to do).
I read this earlier, but wanted to take some time to think before I replied. Today was not the ideal time to ask me this particular question as I have been crying for 3 days straight. But, I have to say that yes, I believe there can be happiness while living with Alzheimer's.
The way I look at it is this, the last 3 days, Alzheimer's has won the battles. Watching Lynn's decline and drastic weight loss has been the single hardest thing I have ever had to witness. However, even while crying and in deep grief, I did STILL take time to enjoy what Lynn and I still have together. We did laugh, we did hug, I was told how I am his whole world and how greatly I am loved. Alzheimer's might be winning battles, it may break me from time to time. Alzheimer's will eventually take Lynn from me...
But, what Alzheimer's CAN'T do is take or break my spirit. It can't - because I wont allow it. Happiness is a conscious decision that one must make every single day. Every day I say to myself Today, I will make the most of what I DO have. Some days Alzheimer’s wins the battle, and I am consumed in grief. But, MOST days I win the battles and enjoy the life we have now, treasure what we still have and am damn grateful for it too.
If there was just one thing I could pass on to those in the earlier stages, it would be this.... Please, try not to let the "little" things upset you so much, consume you so much.. to the point you miss out on all that you do still have together. For example... your loved ones forgetfulness or them repeating themselves over and over. I know it is frustrating when they forget what you said and hour ago, or answering the same question 50 times a day, I truly do! But, it will only get worse... try not to correct, or say things such as you just said that etc etc. Before you know it he will have zero recall, not remember what was said just a second ago.
In the grand scheme of Alzheimer's these are the little things. What you have today.. is the best it will ever be. I know that sounds so depressing, but until you can truly understand this, accept it and then live it, happiness will evade you. The best of times, will be lost ... If I had one wish for you, my comrades in Alzheimer's.. it would be that you treasure all you do still have. Take those walks, go on dates, enjoy each and every day you have together.
When I lost my youngest son to a car accident, the grief and sadness that took over me was horrible. I eventually experienced happiness again, but never happiness as I had once known it. Then when my DH was going through AD, there it was again, the grief and sadness that consumed me again, way before his death. We grieve for so many years before his death, and then for so long after his death that it has to affect us in an everlasting way. Again, I will never even feel happy in the lesser sense that I felt happiness after I lost my son. Now I am completely alone, without a partner to help me find my way, finding a level of happiness that will just get me through the rest of my life so I can feel "emotionally" healthy. New friends and activities can never feel the "void" it just gives us things to do while we learn to live with the grief and sadness that will be with us forever.
Joyce, I am so sorry for your losses and heartache. I lost my only baby, then had a series of miscarriages. I would never presume to say I know how you feel, as I couldn't possibly know. But, I do understand the type of grief you are talking about. The kind that cuts you to your core. You are right that the void is always there. It is how we fill up the rest of our "self" that helps us be able to see the good and wonder in the world. I hope you can find more good, more things to bring you pleasure, to help you increase your level of happiness. Thinking of you, Nikki
Being happy doesn't mean that there is GREAT pleasure or joy to me. There are stages to pleasure and to joy and to happiness. There is pleasure and joy and even happiness in the little things. Daffodils after a hard winter. The sillyness of a kitten or a small child.
Maybe I'm seeing the small joys in life as something to pay attention to because I've been here before. This is NOT the first time that I am going through years of him dying. There were 3 years between when they found the cancer and the last operation where what they thought was cancer that had spread turned out to be a false positive and they finally gave him a clean bill of health. Between the cancer and his heart condition, I was tied in knots for those three years. Just how much good did it do my husband for me to be tied into knots?
The man who comes twice a year to wash our windows just left. My husband had a fun day talking to him while he worked. He was happy. It was easy for me to be happy too.
But if he hadn't been happy, I've gotten to the point where I recognize that I can't let anyone else control how I feel. My feelings belong to me and so does my attitude. I can look back and see the things I've lost, and forward and see the things that I will lose. It would be so easy to be depressed because my husband is depressed, but it would not be the best thing for either of us for me to give in to that.
When he says mean things to me, and he still does that several times a day, I know that it won't do either of us much good if I let it tear me apart. So I've begun to react to those nasty, mean things with anger and not hurt and depression. I can use the anger to fuel the things I need to do.
We are at a middle stage. I don't know how I will feel when he gets to the end of stage 7. We will see when we get there.
I, too, never took for granted the happy life that we once had. More than once, I verbalized how lucky we were, how great that we could golf together, had wonderful extended family times, etc. But when I sat in church this Sunday and heard some of the songs I used to sing with my choir, it really hit me how happy I was with life at that time. I have always considered myself a "glass half full" person and continue to try and enjoy what can be enjoyed, but there is a very deep sorrow when I let myself really feel. I will continue to love my dog agility trials, my golf with the girls, my times with friends who are so good to my DH...and I realize that many do not have all the positive parts that I persevere to maintain...but when I go through all the day to day routines with someone who is disappearing day by day, I know that I am more unhappy that I have ever been. I didn't know that life could be so sad and difficult. I can only hope to come out on the other side with some optimism left to return to enjoying life in the best way possible.
Lincoln, of all people, was profoundly melancholy, and yet he is famous for saying, (paraphrased) - "Most people are about as happy as they make up their minds to be." Medically, it is thought that he suffered from deep depression all of his life, today he'd be on Prozac. I've known people who are always negaive, always complaining, always unhappy and, yet, as an outsider, I can't see what all their anguish is about. Others have all sorts of problems but they smile and laugh thru it all. Go figure.
Shortly after all of this started w/DH, I told the doc I did not understand myself. I knew what was happening, what was likely to happen, but sometimes I couldn't help it, often I just felt quite happy. Why wasn't I down and sad all the time? He knew me well &told me, essentially that I see the whole, bigger picture. I've always known I am a Pollyanna--and sometimes it's a pain even for me--but I had such deep sadness watching my DH--you all know what I mean--his vulnerability, his terror--it was so hard. And, yet, sometimes when I was caring for him, he'd look at me and I could see the love and appreciation in his eyes. He could not communicate it verbally, but he knew we were in this together, it was a strong connection and it made me happy to know that I was doing something for him--we were still together--I was happy and grateful for his acknowledgement of it all. Later I might be crying my eyes out, but the happy/sad moments came and went. But that sweet connection between us was so precious. So, yes, of course, one can be happy w/AD, not every waking moment. of course. AD brings us lessons we did not want to learn, but as others have already said, enjoy the happy moments. They are there, don't throw them away.
Researchers who studied which childhood upbringing had been most likely to make people crazy, as adults, said that it was the unpredictable, unreliable ones.
They said that children could adapt to an angry, bitter, hateful parent (or parents). If the parent was consistently that way, they could adjust.
But on-again, off-again made them crazy. Always off balance, never knew what to expect.]
It's like living life on an ice floe instead of solid pack ice. Never know if it's going to tilt you into the sea . . .
I have to say I agree with Starling and Betty. Betty... I hope when this is over, I can have the wonderful attitude you do. Of course no one would be happy their loved one is sick and dying.. but that was not the question. The question was, is it possible to find happiness in the midst of the disease. Happiness is a state of mind. We can not control Alzheimer's. The only thing we CAN control is ourselves. Betty you said it so well. I too know people who have been through hell and back who still find joy. I have known others with very few problems who have a doom and gloom attitude. The power to be happy, is in all of us.
longyears, I can hear the frustration and sadness in your post. At one time or another, I am sure many of us have felt this same way. But folks like betty who have lived through all the stages, and lost her dear husband, people like me who have live through late stage 6, we certainly understand the situation, only too clearly. It took me time and a hell of a lot of pain to get to where I am today. The journey was long and it was damn hard..... yet, I do find happiness. I hope you can all look beyond the suffering to enjoy what you do still have. It is hard - I know first hand, but the reward is grand. Don’t waste your today’s…. Thinking of you all!! ~Nikki
Starling, I just wanted to add I agree that happiness does not mean your are bursting with glee and merriment, fairies, fireworks and Disney Land.
Today... happiness was
Lynn sharing breakfast with me and telling me I was the best cook in the world
My niece running in from school to give me a gigantic hug.
My nephew calling from practice to ask me to make his favorite dish, cause I make it better than his mom. lol An I love you as we hung up.
The meeting with Lynn's new nurse today. The meeting went great! We all laughed and joked and Lynn really like her!
The deer in our yard eating fallen apples from our trees.
The humming bird that got in through a cracked window... now that was too precious! (we got him outside safely)
I could go on and on.....
I AM NOT happy I am losing my husband, of course not!! But did I find happiness in today, yes... yes I did. Wishing you all some happy moments too ~Nikki
I try to keep upbeat about the situation but it is hard. I have not been able to restart old projects such as quilting, scrapbooking, etc. It is easier on me and for me to sit with him and peck on my computer on this or other sites. I have involved myself in gardening, landscaping and canning this summer and it has made me happy following the growing things in the garden and designing things in the landscape and canning lots of vegetables and fruits. Can't forget the garage sales and I take him along.
Almost every family I know has problems of some kind or another but usually we are not aware of how bad their problems or trials are, just as they are not aware of how bad our problems are, dealing with the AD. Everybody is scared to death they will get it and choose to keep themselves distanced from it. People choose to remain in denial about AD as long as they can. I personally know of 4 people whose husbands have AD but they don't want to talk about it. I used to be one of them. Our first Neuro said he had AD in early stages, a year later second Neuro said he didn't know what was causing his problems but he DID NOT have AD. Now who would you prefer to believe?
For me, beautifing my yard and inside my house are very uplifting and help me stay focused, along with Lexapro and Xanax.
An after thought.....The disease and ramifications caused by the disease is almost always going to affect how we feel about ourselves and our spouse. Anytime you have been yelled at, ranted at and otherwise physical or mentally abused (if it has happened to us) is almost bound to effect your feelings, personality and self-esteem. It would be extremely difficult for me to take a lot of the verbal abuse many of you have or are dealing with.
Can you be happy in the midst of AD? I'm sure that IS possible - look at how many things we have laughed about on this site. BUT - if you feel unhappiness it is an honest feeling which it doesn't help to ignore. If you truly don't find happiness I totally believe you need to seek out some sort of therapy and drugs if necessary. If you are depressed you can't even enjoy what is good out there. This disease is so depressing it is hard to understand how upbeat most of us are most of the time. Life is just plain unfair - if you don't deal with AD, there are hundreds of other bad happenings to get to you. But, we are here, for some reason, and we are better off if we can figure out some way to enjoy whatever is our reality. I suffered from deep depression in my 30's and learned enough from that to know not to let things go too far - get help! Right now I'm not sure I could say I am 100% happy, but I find myself content for the most part. When I feel like crying that is what I do. I find at the end of each day I have to make a list of what I'd like to do the next day, and I try to get everything checked off that list! What is there about crossing something off the 'to do' list that is so satisfying? This week I plan to get out the quilt supplies, last week I promised myself I'd start reading. Since we are still alive I hope we can all find some pleasure - or get some HELP if we are overwhelmed. Love to all of us on this journey.
I think some of you have read the wrong things into the note I wrote earlier. I choose to try to find things to make me happy. A good book – a new crochet pattern – feeding Ron his lunch – taking him for a walk – that is all I have left of my once active loving husband that meant the world and all to me. He was my rock – the foundation upon which I built each day. I have watched him die, day by day, bit by bit, for the past 8 ½ years. If over the past years he taught me anything it was when I think I have reached the end of my rope – tie a knot and hang on.
Do I let this God awful disease take me too? This is what happens all too often. I think the statistics will bear me out on this one – but it is something like 1/3 of all care givers die before the patient dies. I won’t let this disease take both of us – it is just not fair. I am not rapturously happy, by any means – but I try to make each day the best it can be.
I sleep each night with a body pillow in place of my Sweetie – but I sleep better now than I did before I got the pillow. Does it replace him – by no means – but it gives me something to roll against rather than the vastness of an empty bed. Every time I would move to the emptiness I was awake – usually awake for the remainder of the night.
This disease has taken more from me than I can ever write in a letter to a message board – but I refuse, at this time, to let it take me as well. I will continue trying to find what happiness I can for the both of us – yes, we are still a team. He is still my husband and will be until one of us draws our final breath. Who will go first – I have no idea, but he will always see a smile on my face when I go to visit him. I will save the tears for the elevator when I leave the nursing home.
I live alone in the home he built for us – I have made changes here and there so that it is more comfortable – but it is about all of him I have left. I considered selling for awhile – but I know that is not the answer. He would want me here and I want to be as happy for him as I possibly can. I see no point in making myself more grief ridden than I already am. I have grieved for a long time, as we all have, as AD spouses. Gloom and doom will get us nowhere – try to enjoy what we have all been given the sunshine, the flowers, a gentle breeze and the ability to cope in the face of all problems, be they big or small. Try to laugh in the face of adversity – and things will seem to not be so overwhelming.
It is just me and the Man Upstairs. He is carrying me for now, and he has never let me down. There are still only one set of foot prints in the sand. It is with his help that I get through each day, that I find the strength necessary to take each step. I know he will not give me more than I can carry – and I have asked him a million times – just how strong do you think I am? Please everyone, be well, and stay in touch we all need each other.
Ruth, both of your responses were beautiful. I strive to be more like you. I loved that saying, if you reach the end of your rope.. tie a knot and hang on! Perfect!!! Might have to print that out and put it where I can see it to remind me daily. I have a body pillow too :)
I began re-reading the book "The Secret" for the second time yesterday. It was so uplifting the 1st time I read it, before I knew what was going on with my husband. I just rejoiced in the messages, and know, despite all the ups and downs of dealing with my situation, I can experience joy of my own.
I especially would like you to read it Joan, because it will help you with some of your goals. It is a book about the law of attraction, and how positive thoughts bring more positive into your life, and negative thoughts compound themselves.
I began reading it to prepare myself for my new job. And I was so "up" today, I sold an $8,000 spa on my first day at work. Like I have always said, this disease is not going to kill ME. I will be happy. I will outlive it. I will, I will. I am determined not to let it take me down.
For anyone interested, I've been getting "messages from the Universe" for about 2 years. It is always a positive way to start my day. Go to www.tut.com. Sign in & get the messages Mon - Fri. Most of my friends get them.
The more I think about all of this, the more I realize that there is a difference in being happy, and finding happiness. For me finding happiness is noticing the little things that bring a bit of joy into my life. That is how I "find" it. It is about choices. I can choose to tell myself sad stories about how bad things are going to be, or, I can just live in the now.
Right now, for example, things aren't all that bad. He is watching yet another fix up the house program on DIY. He can't handle stories of any kind these days, but he can handle that station. And I am in here. We had a nice supper together, and just had some ice cream together and in 15 minutes to half an hour he will want to go to bed and the day will be over for a while. Not too bad when you think about it.
He was upset for a while after supper and didn't want to sit outside with me and our next door neighbor, but by the time I came inside he had forgotten why he was upset and things were OK again. Not too bad when you think about it.
So I can even log in a little human contact (face to face) in my daily log. I sat and talked to a neighbor. One of the little joys in life.
Its strange that Kitty should mention "The Secret" as I have been contemplating that book for two days now. My secret to happiness lies in the new person I have become and knowing how proud my husband would be of the strenght I have gained from this.If my DH could see where he is today he would have ended his life long ago. I remind him daily of the great man he still is despite this. In our middle years we went through very difficult times and survived them only to have AD arrive all too soon in our lives. I wish now that we would have spent less time looking for the lost eyeglasses and more time living our lives. To all of you EOAD spouses (which I am one)-don't waste those precious moments looking for something but enjoy something before its lost. The handholding,the hugs,the shared cup of coffee while thier speech is still there. I wish I could have a do over of all the moments we lost. Cherish every moment early in the game,thats whats going to get you through to the end.
As for happiness,the sound of my five year old nephew telling me that his first grade work is too hard for me,my 8th month old grandneice trying to walk,a humminbird tapping my shoulder. Its there in the most infinate of little things. I will never be content with what my husband is going through, but I can't have a do-over. I just cherish and enjoy the little things we still have together.
You are the most amazing group of people I have ever had the honor to "know". I am overwhelmed at how thoughtful and brilliant every response has been, and I cannot thank you enough. I just finished writing tomorrow's blog, which is about what you have all taught me today.
My apologies that there is not time enough for me to thank each of you in a personal e-mail
Magnoliarose, Don't contemplate, ORDER it. We need something to balance our lives. It is the most uplifting book I have ever read. It has put me on the right path. It teaches you to focus on the positive. We all need that.
I am too exhausted tonite to write anything profound...but I do want to say that I do believe moments of happiness are possible during times of sorrow and grief. I agree with all of you that said they don't want Alz to take their life too, it's so difficult for us caregivers. I think you are all so brave, courageous and real!
Yes, it's 11:00 in the evening & I'm just now adding my thoughts after reading all of yours :) Which by the way are so uplifting & encouraging. I absolutely believe that we do have the ability to be HAPPY in the midst of Alzheimer's. As many of you have said, we must grab onto those daily "little things" and enjoy them while they are happening...and try to 'overlook' the hard times ~ I am blessed in that my husband is going through a period right now of LOVE LOVE LOVE! He has told me hundreds of times over the last 2 days how much he loves me :) It is awesome! And when you are loved, you want to love back, in spite of how much they have lost. You "forget" to remember they are fighting the battle of their lives!! And tonite, I went through some of our "early" memories of shared times together with him...We laughed & really had a good time together. I remember the first time we went on an overnite weekend trip together & he was 'amazed' that I only brought one little tiny suitcase...I am still the "low-maintenance" girl he married all those years ago :) We laughed about how amazed he was :) That was fun!! All this "memory lane" business while we were getting him ready for bed & changing his Exelon Patch in the bathroom...just making the most of each & every moment of the day...or night! No, each moment of each day is not "easy", but I do try to look for the moments of happiness & enjoy them as our lives go along...getting enough sleep also helps :) And not alot of 'poop patrol'!! :) We have a little calendar that my sister gave my husband for Christmas this past year..."Life's Little Instructions from the Bible"...Today's "little instruction" was "Don't Postpone joy"!! How appropriate for this thread ~ And the verse from 1 Thes 5:16 is "Rejoice Always"...Love y'all & thank you for all your encouragement to each other & to me. Debbie
I agree with Joan, what an amazing group of people you all are! I got to thinking about yesterday. It was hard during bath time, being called those awful names... being told what a horrible person I am, being yelled and screamed at. All over a lil thing like taking a bath. Years ago, this would have done me in. The day would have been shot. I would not have been able to see any good -through my hurt feelings and depression.
I got to thinking about the visit with Lynn's nurse. It was our first meeting, and she did a complete physical. She is going to be the nurse to care for Lynn on a regular basis. She told me how concerned she was about his weight loss. Told me the things she noticed he was declining in. Told me how she would help me know when it was time to call hospice in... Years ago, this would have sunk me further in depression. For it, I wouldn't have even been able to hear her tell me the good things.. like how well she thought he still walked and talked for his stage.
I got to thinking, you have come a long way baby! Yesterday was a fantastic day! I saw so much joy, experienced so much laughter and love. The bad was just a blip in the day that I did not concentrate and dwell on. I am now able to over look it instead and chose to reflect and treasure the positive. I keep the message I wrote earlier posted several places throughout the house... it helps me.
Today, is the best it is ever going to be... don't waste one moment of it!!
I plan on following my own advice. Today is going to be a good day! I hope you are all able to experience something that brings you happiness! ~Nikki
Timing is everything. I've been sliding in to a down mood for a few days now and finally got a handle on the why of it. At then same time I just read Debbie Macomber's new book--'Twenty Wishes'. and then Joan's 'Happiness Blog'. Even as we slog through the mire of trials and emotional tangles that the dementias present us, we can be HAPPY. Not necessarily in a supremely vigorous, exstatic way, but in a mellow, life sustaining way. I really like the idea the widows in 'Twenty Wishes' decide to develop their own lists of 20 wishes--things they'd put aside but still wanted to do; new things they wanted to try; things to look forward to. As they worked on their lists (not just naming the wishes but bringing them to fruition, they were able to move forward into their "new now"--different than the future they had anticipated with their spouses, but the future they had been failing to move into on their own. Wishes can be as big as a trip to Italy or as small as walking in a summer rain--stomping through every puddle you find. A new fancy, 'where would I ever wear it? outfit, to going back to school. Realistically there are bariers to what I can actually do now, but there are things I can do, and there arew things I can work toward. There are things that will just have to wait awhile, but I can still wish for them.
These are not should do's, nor are they have to take care ofs. These are my wishes for me. Doing this, will help me stave of the blue funk and will keep me on an even keel when things are rougher with his VaD.
Ruth, I loved your first post. I thought it was very positive and realistic. It is a lesson in resiliency and the strength of the human spirit. I have been thinking about it off and on since I read it. It made me think about Frankl's "Man's Search for Meaning."
Everyone, I love to excercise. I have a walking group and belong to a health club. I just went backpacking for a week with 3 women in my walking group. It keeps me sane and centered. Getting a shot of serotonin to the brain helps me tremendously.
Joang, Is there a discussion that list of strategies/things to do that promote the health, wellbeing and happiness of caregivers? I would really like to hear how especially young, working spouses juggle everything and stay happy and sane.
Also, maybe we can have the thought and saying/quote for the day like the AlAnon "One day at a Time."
I have written a few blogs about the importance of taking care of the caregiver, but nothing comprehensive - I will start a new discussion topic right now on that, and we'll see where it leads.
I was looking for an older post to bring to the top (TTT) the one on what we are grateful that our loved ones can still do.. but couldn't find it. Came across this one and thought it might help some of our newer members ((hugs)) ♥