...At this stage of my life, I often look back upon it and wonder what I would be doing now if I hadn't gone through that sad dementia trip. Did that ten year experience change me? There's no doubt that I've changed considerably, but is it just old age, or is it because of what I've gone through as a caregiver?.... This is my conclusion. ...It's been a great learning experience. I've learned so much that never would have entered my mind otherwise. I've learned what things in life are of great value.....Here is a few of them. ...After witnessing loved ones struggling so hard and painfully just to think, I've learned to cherish that god given ability to be able to think. No matter what my situation, I now feel blessed that I'm able to think. ...After many bad times with my Dear Helen, she taught me patience. I learned how to wait. A very simple and valuable trait. I can accomplish so much if I just patiently wait. ...After eight months visiting her every day in the long term care home, and becoming close to others there, I learned the value of a few kind words and a gentle touch. I never dreamed it would do so much for myself and the others. Everywhere I go, I find something friendly to say to whomever. ...After finding this website and browsing here for a long time, I got up the courage to join the discussions. I learned the value of communicating with others, and putting all my problems out there. It was so comforting just to know that someone cared. I had never dreamed that I could write anything. Somehow, I learned to enjoy writing and even made a little website of my own so I'd have a place to put my stuff. It never would have happened without the dementia trip. ...After realizing what I've been through, I consider myself a survivor, and have a feeling of self-worth, and that people like me. What greater gifts could an old man ask for? ............................................GeorgieBoy
Thanks for your thoughts, George. I often want things for me to be just as they were before my husband got sick. I'm just gradually learning that they can't be the same, because I've changed so much. Since last September, DH has been in an Assisted Living Memory Support Unit in the same retirement community where we had an Independent Living Apartment. I am still in the apartment. I'm struggling a lot, trying to remember who I was before dementia happened and trying to decide who I am or who I want to be now.
Excellent George. But I do have to answer your question from my point of view...
"What greater gifts could an old man ask for?"
I could ask for a personal retinue who run ahead fluffing my pillows, making fresh lobster sandwichs, hoagies, philly steak sandwiches with fresh cut fries, a french pastry chef, an italian chef, a cantonese chef, someone to cut open the sacks of coffee beans and grind them for me, a professional story teller, a handyman, three cleaning ladies, nine cheerleaders who are overly enthusiastic about everything I do, and a bus and driver to transport all these people around thanks for asking.
You're a good man and I'm just having some fun. It's learning that is one path where the internet is such a powerful resource. I stumbled across a documentary on Pearl Harbor. That took me to a documentary on the Coral Sea battle which expanded to four different ones about Midway where the war in the pacific shifted so much. That took me to Japan and documentaries on the Japanese people which led to what Shintoism is (their religion) and that took me to the Japanese tsunami where I ended up in a maze of videos in Japanese characters which I walked through for days and that has taken me to the ring of fire and what subduction really is which takes me to today's documentary about Australian wildlife and how different it is.
I understand what you said so well. I don't feel any warmth from losing my partner, but I have come to realize deeply that I had 40 years as a lucky man with a good woman and I am also ready to be a survivor. I honestly would rather have continued blissfully unaware in the cocoon we had but I agree with you that when we appreciate the things we were and had it opens the door to appreciating what we have and are now.
What an unbelievable journey life is and around every corner is a lesson. It wasn't that way. It was a horrible nightmare that went on for years and my Dianne's suffering from it is still not done - but she will be released one day and I have come to be satisfied with my lot in life although I want more (see above).
Once again you have written with wisdom and grace. I would like to expand upon your thought provoking post and ask our members to please share with us some of the lessons they have learned from their dementia journey.
Please, everyone, post those lessons here. Thank you, and thank you, George, for starting this.
I am not as far along this journey as many others, but I have learned a few things. And what comes to mind this morning are the lessons of understanding, appreciation, respect and tolerance. My father (97 years old) suffers from Lewy Body Dementia. Because of my experience with my DH, I can almost pinpoint when the signs of dementia first became apparent in my father, and I would place them some 17 years ago. No one in the family, including my mother, recognized the symptoms for what they were, and even if they had, I doubt very much would have changed, as mental issues were generally swept under the carpet. But I now have a better understanding of what my mother went through all those years she was the caregiver for my father, until she passed in 2004. I can now appreciate what she was trying to tell her children when she would say that Dad was "acting odd" and yet when he spoke to us he seemed his normal self, and how we would then tell her that Dad seemed fine. How that must have hurt her! I wish I could tell her how sorry I am that we did not understand, and did not act to give her more support. I have gained a new respect for caregivers of persons who suffer from any sort of debilitating disease. Their's is not an easy path if their partner requires constant attention, as mine does. And I now have an increased tolerance for any kind of "odd" behavior in people I don't know very well - they may very well be suffering from dementia, and should be treated with patience and understanding. And I could and should probably extend that increased tolerance to all people, who ever they are, healthy or not. We all have our demons - some are obvious, some are not, and a little bit of love and understanding can go a long way to help the healing process.
What a perfectly wonderful thread, and uplifting and oh so hopeful in this crazy world. All your comments just touch home.
Loving Dado through this journey, as tough as it is, has made me realize what life is truly about, what I am meant to do. To simply love other human beings, in reaching out and helping we heap huge rewards on them, and us. It is like a great leveler, to care for someone physically ill, and so mentally too. As a patient in the Veterans home said to me, "Patty we are all the same, all in this life in the same way, despite whatever reason we are in here for"
Some of the other lessons for me, are to do with friendships. Now I still am trying to figure all that out, WHY are people so callous and uncaring and self centered. It is coming, slowly, the forgiveness and the acceptance of it. One thing that opened my eyes to my anger with ones that used to be close to me...is the scripture in Corinthians 13 that says, "Love holds no records of wrongs"
If I may add, to those of you that are home with your spouse, and not getting enough sleep, and all the huge challenges that go with it, THAT is really hard, and how almost impossible to see the light and the lessons. This is something I hope can be remedied, at least a bit, with changes and help from our country.
I too am new to this with DH being diagnosed officially Dec 12 of last year. Known for a few years he was having problems. We are in the early stages in that he can be left alone still and funnily enough we actually get along better now as we spend more time together and communicate a little better than we have in the past 40 years of marriage. I am slowly learning to be more patient. A patient and very tolerant person by nature I must admit I did get angry at him these past few years when he would do something "stupid". The diagnosis was a huge blow as I am sure you all know. But since getting the diagnosis things are better. I now do not have any expectations and have taken on the lead role in our relationship and now that I have accepted it, things are easier for me emotionally, I am not fighting it anymore and just going with the flow so to speak. I do know things are going to get tougher in the future. I asked him today if he has noticed any progression himself of the disease. He said he hasn't, neither have I, but he did say it frustrates him and makes him sad that he can't fix things anymore. ( he built our house) His memory doesn't appear to be as affected as his cognitive function. Can't change a light bulb, can't cut his toenails as he can't figure out how the scissors work. A few weeks ago, someone said that one gets stronger with this diagnosis. I am already noticing I am stronger. I haven taken over all the bills and paperwork, figured out how to fix our toilet thanks to good old Youtube and many other things I couldn't even begin to think I could manage prior to AD. I love my husband. I was 17 when we were married, he was 22. I am no different than anyone else on this board. Life is a learning experience and we learn every day how to cope with it, how to live it and how not to take it for granted. He has looked after me all these years and I will do my darndest to look after him in his final years.
GeorgieBoy...you are not an old man...maybe you have some years on you and you have wisdom beyond belief, but Old? Nah....you are a man young at heart, wanting to still learn and do things. You are only as old as your "headwork" ( a Marine Corps term) will let you be. Some people are old at 41...dour, grumpy..you know the kind. You are none of that...you are so much more and one of the most valuable assets to this site.. We can't do without you ever!!
I went up to the cemetery, yesterday, to tell my Ozzie that he will become a great grandpa in Oct...I wish he were here so I could get a picture of his reaction to the news. In my mind's eye I can see what he would do. He would have a broad smile on his face, raise his arms and clap his hands with joy! Funny thing about that visit though. Other times when I went out to the cemetery, I would have a hard time leaving...not so yesterday.Was it because there was another service about to start nearby? I don't know...it was a beautiful sunny day and very peaceful there. It was when I got home, I realized that though his physical being is there, he is really here at home..It was something somehow I could feel or sense. In all of our 36 years of marriage and 40 years of knowing one another, he always encouraged me to push forward be it skiing, running,being willing to take on big projects, you name it. He taught me I could do more than I ever thought I could manage. He always was one to show generosity to others, open doors for the ladies, loan his truck to a friend even if it would delay something he would have to do, he shared everything. He was patient with his kids at school, our kids, me and everyone else. He knew what was important," if it ain't arms and legs, don't sweat it" he would say. He endured all his ailments with grace. He never lost his temper or complained, he just did what his doctors told him he needed to do. He taught how to love without condition which was his most important lesson of all. He was an inspiration to everyone who knew him.
Georgieboy, I don't get to browse this site as often now since DH went into care at the beginning of the month, but when I do I am often rewarded by a gem like your message. When you are in the middle of 'the long goodbye' it's difficult to remember to be grateful for the things you have listed, and I think for me the most important lesson learned is never to take one day of life for granted. I think of the people on the Malaysian Airlines flight and those victims of the Washington State landslide only an hour or so from where I live in British Columbia, and I'm sure their loved ones would change places with me in an instant, just for one more goodbye.
Mimi* your DH sounds like an exceptional individual and how special being a great grandparent would have been.
I recently attended Frank's army reunion. One of the dear ladies has an as yet undiagnosed muscle ailment. She has no strength in her legs and arms no treatment is known by doctors in as great a facility as UCLA Med Center. Her husband is her caregiver. They are in their 80's so another tough situation. So when I can get up, shower, dress, fix my bowl of raisin bran I am ever grateful. Georgie - I appreciate your wisdom do keep posting.
It's taken me 2 years to really begin to understand what for me has been the biggest, most important lesson of all my Caregiving years. All the strengths--thinking ability, patience, etc. are parts of it, but once Ron passed I first went into a kind of slow motion, allowing myself to do things at my pace,resting often, refusing pressure. We were blessed by his quick, easy passing, rather than the drawn out passing many have to cope with. From the moment I was notified I went into a kind of slow motion mode. Everything got done, but I refused to be pressured or to pressurize myself--that was over. At the same time we were dealing with Ron's last medical crises, our house was in a Short Sale, I was apartment hunting and then downsizing and moving. I had to place 2 of our 3 Cats. My world was turned upside down, inside out, and sent through a shredder. Because of his multiple conmditions I was his Caregiver for 24 years-the last 6 since his Dx of VaD. So much of my grieving was done that I was able to honestly tell people we were blessed at his quick, easy passing and I was okay. By Fall I had searched out where the Senior Centers were and what was on offer there, intending to get involved. Never happened--yet. Winter weather happened. I became cognizant of the significant decline from my own disability which had been happening and I'd closed my mind to. Then were 3 ER trips--injuries, new braces, going into my power chair full time. WHAT I DISCOVERED from being a Caregiver for Ron was that all the skills I developed to take care of Ron, could be-- SHOULD BE-- applied to me too. It's more than taking breaks; keeping up your own medical checkups, eating well, getting enough rest. It's being patient with yourself when you just can't move things along at some "expected"rate. It's realizing that just because you can do things doesn't mean you have to be the one to do them all the time. It's accepting help. It's asking for help. It's realizing that you deserve to do all these things because you have the right to have a life beyond survival. I'm not used to having help with everyday things, but I'm learning. I'm finding myself having more energy, a bright outlook, and anticipation. It's good to get up in the morning, but it's okay to sleep in sometimes too. Life is on the menu and I'm aiming to have a decent serving.
George, I saved your words. They are so beautiful. You have a gift for words and I'm so glad you found it. Your wife was a very lucky woman.
Carosi, I have received so much help from everyone since I joined this site in 2009. But of all of them, you have helped me the most. Your words of wisdom are something special. You have tried to tell me, and others, how important getting help in is. I have listened but did not do it, being so afraid of what my husband would do or say, afraid if they would take care of him like I do, afraid to have strangers in the house, etc. I don't know what has been wrong with me in that regard. Everyone from you to his doctors, my doctors, my family have been telling me I must get help. I finally have begun doing It, little by little. I have a cleaning lady now (oh, how I wish I had done this sooner). But, to be honest, I didn't do it, my daughter did. She finally just took it upon herself to get the ball rolling. Now I checked into day care, had someone over from a caregiver agency, looked into some memory care homes, and will hopefully have someone here to take care of him after I interview some of the caregivers to see which one fits with him.
Thank you again, Carosi. You have been a huge help to me In helping me understand how to cope with the many difficulties of living with a spouse with dementia.
"Life is on the menu and I'm aiming to have a decent serving."
Those are Carosi's words above. I saved them because they too, like George's words, have a special meaning for me. I don't plan on waiting until my husband is gone to know the meaning of those words. I have had a decent serving but I DO want more. It's so difficult now since my husband seems close to the late stage of FTD/AD, but there are days, like today, when I see the beauty of my yellow tulips all around the front of my house and I enjoy them so much I wish they could be there all summer.
I have also learned a lot from Divvi, and Coco makes me feel better reading her words. She's such an upbeat person. Most people I know, including our doctors, are very surprised at how much I know about handling a spouse with dementia. I tell them I learned from this site and they're very surprised.
I learned I have to take care of myself. It took a long time, but I'm learning. I took my husband for his first day at day care. I can't honestly say it was a good experience, for either of us, but I'm learning. I'll talk about this in a later comment. But everything I know about dementia I learned here. Joan is an inspiration for me, as are all of you. I don't write often anymore. I cant say exactly why because I don't know why. I come here almost every day to read all your comments. They help much more than I can say. So, keep learning. Keep on going, even when the going gets rough. There are some days when I don't think I can; I've been going through this for so long (8-9 years), but the next day I'm feeling better and I'll still keep coming here to learn more.