Our spouses' AD has brought us nothing but negative outcomes - right? Today's (9/27) Blog topic discusses one positive impact AD has had on my life. Share with us any positive outcomes it has had on your life. Or you can disagree, and reafirm that it has brought nothing but pain and heartache. joang
I for one have nothing postive to say about dealing with this disease. It has brought pain, family seperation, depression, fear and a glaring knowledge that what I thought might be our future is never going to be. I have lost my faith, some of my friends, and even my son who is still in denial. But most of all I spend every day waiting and watching for signs of change in my husband, knowing Iwill lose him one inch at a time. Trying to keep my little G-daughter from being hurt by this.
I believe with all my heart that God has forsaken my family and I. That this is some cruel joke or punishment for past sins.
I will never see anything positive or good in it. And I won't ever see any blessing or strength from God.
Something good...hmmm. I can't say there's anything "good" about the disease, but I get what Joan means when I read her blog.
If I could pick out any items that are positives about my life which have resulted, directly or in, from Jeff's condition...well...we do have time to hang out, go to lunch, work on our latest venture (small potatoes stock-picking) together. Don't know how long this "ok" time will last but, as I've stated before, I'm willing to live in denial for as long as it's possible.
Let me see what else...well, it did kind of force us to hire crews to finish our house (which has been a renovation project of Jeff's starting in roughly 1996,) and which--when his abilities trailed off--left us living in a strange sort of messy, half-finished environment.
We have--again due to Jeff's loss of ability to manage and repair houses--had to sell our 5 rental properties. I can hardly say I object to not getting Thanksgiving calls from tenants whose heat pumps have died, or wondering how on earth I'd ever manage to catch up on the deferred maintenance. Unloading them has brought a measure of ease to our lives.
Finally, there is my ridiculous but stubborn insistence that I am--by vocation and avocation--a writer. Facing the loss of what I probably valued most (fulfilling time with Jeff,) I find that I can turn to my writer identity as a sense of self which keeps me kicking.
Whatever else happens, and regardless of how hard it might be--it's vital to keep noticing what's beautiful about life. Your kids, the canopy of trees over your house, the taste of a fresh bottle of Sauvingnon Blanc, walks with the dog...whatever. We must relish that which we have not lost.
Trying to come up with something positive as a result of disease is tough. One thing I can think of is that I made two wonderful on-line friends who are facing similar issues. I had the pleasure of meeting one of them and we are now in regular contact. Friends and family don't really understand what we are going through and tend to minimize our challenges. This is frustrating. Another thing that may seem trivial but is not for me is that my husband is more helpful in terms of housework, helping in the kitchen and generally very obliging when I ask him to do something. That feels good. Inge
Nope, can't think of anything positive. My dreams have been replaced by taking care of ... well, you know. Single would have been better; now it's married with... well, you know. I do feel bad for my LO; he didn't plan this terrible disease but... Maybe tomorrow I'll think of something.... The only positives are the wonderful Joans.
I look at life differently now. I work many hours to support everyone & my husband now has taken over all household chores. Recently when I was unloading the dishwasher he asked if I still remembered how to do that. I am thankfull that my husband is now able to go to events for my kids - he is not working 70-80 hours a week. I am thankfull to be closer to a great group of freiends at church that have replaced our "jet set" friends. I am thankfull to see my daughter change into an advocate trying to raise awareness. She is no longer in the "me" generation but has become more compassionate & loving towards her father. I am thankfull to meet an online friend who was diagnosed 5 years ago- and is still vert active. We as a family will be walking on her Memory walk team this month. I am thankfull to have lived 23 years with my best freind who is putting up his best fight to slow down his progression. I am thankfull through all this my husband still has this terific sense of humor that keeps my going when I am overhelmed.
I have thought about this since Joan's blog and I cannot come up with anything positive about this journey, but I can say that I have learned to take care of the everyday problems(air conditioning quitting, water hose to washer breaking flooding garage). I have found out that many people are willing to help you if you just ask, something I never liked to do, thought I was superwoman. I have found that life is never what we expected it to be and we must go with the flow. I have a plaque in the living room that talks about the walk we take together through life, the most important part of the poem is the end "I've enjoyed our scenic view and I know my walk was better because I walked with you". AD cannot take that away from me.
ok...here's a positive... Robert and I rejoined the choir at church. This is something that I really enjoy and that Robert used too. Before his illness, he wouldn't have done this with me. He sits in the back with the other men and I get to sit with the ladies and feel like everything is "normal" for a couple of hours a week.
I am learning to and have been blessed by accepting help from others. Before Robert's illness, I would sooner die than admit I couldn't handle something. Now I know what a blessing it is to have people who care enough about you to help you deal with whatever.
This is a litte "tongue in cheek", but I have become a pretty good cook. I just finished making lemon squares and last week I made great brownies. As you can tell, most of my cooking is treats!!!!! DickS
I, too, am learning to accept help. I am always trying to think of how to repay those who are so good to us. A positive of AD is that our son, daughter-in-law and granddaughter returned to Canada a couple of years earlier than planned so that they can spend time with Gord. The transition is a difficult one for our daughter-in-law especially as she is Japanese and has cultural shock to deal with. It has also caused them financial concerns and we can only help so much in that regard.
I would have to say NO. EOAD has taken my wife from me, added undo stress to my life, placed many more responsibilites on me, turned me into a single parent and created a personal sense of loss physically and emotionally in my life that I would have never dreamed or forseen. Today I asked her if she knew what today was. Then I told her it was a big day in her life 21 years ago. She had no clue. Happy anniversary to me. AD sucks.
I am sooo sorry for the pain you are enduring Tony. I can not imagine what it would be like to be going through this AD journey as a parent of children still at home. My heart aches for you. Tonight I shall say a prayer for you. Happy Anniversary Tony.
I know how you feel. I was depressed for a week before my anniversary this year. I kept thinking, as you are, I am sure - This isn't how it was supposed to be.
You will come out of this stronger than you ever thought you could be - although as I said in my blog - we certainly would have preferred other means than AD to have given us strength.
We know this is not the life we would have chosen, but we have no choice in the matter. I am told so many times "I don't know how you do it". The positive in the last few weeks is the many friends I have heard from. I felt for so long that I was all alone, but am finding out that if you ask for help, there are friends that are glad to help or will just call. You just have to open your heart for help. I hope this has made me a better person and more compasionate to other with problems. Sometimes you wonder were you are going to get the strength to handle everything, but somehow you find a way! God bless all of you that are going through this caregiving journey.
I have become a great liar, a manipulator of my beloved and a pretty dominating husband, not what I would prefer. Now that she is on anti-depressants, she is easier to get along with. You might say i drugged her into submission, but I won't.
Positive? Well, maybe the fact that I realize how much our kids really care. they are constatnly offering help, And I have learned to do all sorts of things, like I just stained the deck because, not only does he have AD, but he's also 84, and recently had rotator cuff surgery, ... and anyway he sleeps all the time anyway. Also, my DH has come to the realization of how much he needs me, and mentions it often. That is not to say he doesn't forget it sometimes, and find fault with me, like right now, he will tell me I used the wrong stain on the deck, and didn't do a good job, but then he'll realize that it's done... which is the most important thing, and he will come back and apologize, and tell me how much he appreciates it. Up and down.... Up and down.
AD has brought only bad experiences to M and I since diagnosis five years ago. Its very frustrating to me to watch her decline and to be so helpless, even with state of the art doctors and medicines.
I'm learning to be more aware and thankful of all the blessings I have had through our 52 years together. As we continue on our jouney and I watch my DH slipping away from me my heart aches but I know that God has promised to give me the strength I need to face each tomorrow. Without my faith I don't think I could do this. It has to be by far the hardest thing I have ever done. Friends and family are kind but know one has any idea what we all go through. One must have to walk this path to understand. I remember when Nancy Regan said it was the long goodby that was so hard and at the time I though how sad. Now I understand exactly how she felt.
positive well I think back on how much I have grown...I can say there was a time in my life when I was so unsure of myself I would not even try something for fear of failure....NOW I figure after the past 5 years I can do anything...First I took care of my dad until he passed away here in our home holding my hand...Now 3 years into my husband's Alz...Nothing I am afraid of now...I see how much my children, Larry and I share our feelings..How much we have learned to ask for forgiveness for the things we have done we can not change. To know that God has a plan and I may not get it now but someday I will have a clear picture...Renee
I agree with you - the whole point of that particular blog on something positive coming from AD was the strength we found within ourselves. We can do things we never thought possible because we have had to do them. That builds confidence, and that is positive.
AD is torture on both caregiver and sufferer, no doubt about it. But after this, we should be able to handle most anything.
I have been watching this board for a while, today's my first post. I cared for my AD husband for 10 years. He left us 4 yrs ago. But the problems in caring for a spouse have so many facets, this is such an important place. Was there anything positive? Well, I always knew I was strong and confident, but the experience made me moreso. I was pleased how our adult children cared, not only for him, but for me as well. They did what they could to help and protect me, remained close. On their own they went to lectures, looked things up and learned.
I found a new love for my husband, and some of his 'macho' qualities mellowed. He eventually became violent, but before that he was so sweet, so easy to love, so appreciative of my caring for him--altho there were plenty of 'no's' and fussing & storming between us. But I saw sides of him that I never saw before, the masks we all put up around others came down.
There is a life after AD, but AD was hard, harder than most people think. Still, I survived the bowels of hell, and nothing and no one intimidates or frightens me in everyday life. So those are positives, and I'll take them, but I don't think it was worth the price.
Renee, I wish I had your faith and thought that this was part of God's plan. I keep gett ing the idea that this is God's punishment on me for not being patient enough with my mom and mother-in-law . My mom had vascular dementia and my mother-in-law had some form of dementia after a stroke. I am working on the faith thing.
Thank you for your insights. It is good to hear from a "survivor". We will all come out of this stronger, but as you said, and as I have said before - I would have preferred another way to gain strength. But as I also always say - We don't get to choose.
Jan: Please do not look at this as punishment. Neither my husband nor I did anything to deserve AD and I'll wager that's true of most on this board. We've all been impatient w/our parents, children & spouses. We're not saints, after all. I think that society tells us too often that we have done something bad, that we will be punished for this infraction or that. But you're human and when you lose patience and have bad thoughts, be grateful that you're normal. You may not have been the world's best caregiver to your mother & MIL, but you did care for them as best you could and I'm sending you lots of brownie points for that. It's far more than a lot of daughters ever do. If nothing else, work on having faith in yourself.
Jan, I know your feeling. How often I have thought, I should have been more patient with my MIL, and my own Mom, also, although she passed away very early (at 71) of cancer, she began to get a little confused, and I had no patience with it. MIL, lived for 6 years in a nursing home and once I wasn't the main caregiver I managed more patience, but now i have my DH, and I am really trying. And I pray all the time to make me a better caregiver, and better wife, and more patient and understanding than I ever was before. this is my last chance, next time it might be me, and I need my own caregiver to be patient and nicer than I was.
Hi Chris, I pray for patience, kindness , compassion and strength. My sister who has been fighting ovarian cancer for the last 4 years has an angel which the inscription, "Lord hear my prayer." I liked it so much that she brought me one when she came for a visit. It is in the dining room and every time I look at it, my prayer for us and for her runs through my mind. I, too, hope that my caregiver will be knder and more patient than I was.
I read this question long ago and still can't say anything positive. I'll work on that. I'm usually a "look at the bright side" person. I'm struggling with this one.
Well, I have been dealing with this disease that has captured my husband for 11 years now...in the beginning it was hard to find anything positive...but, now after all these years and basically being on my own and alone for over five years I think I have found a "bright" spot. I am stronger, more resilient and basically a more fulfilled person. I spent the first twenty years being a daughter...then I married and became a wife and mother and then a grandmother. Now I am still those things but independent, happy and and a much smarter woman. I am now his caregiver but do it with joy since I know he would do the same for me and I know that he is so proud of who and what I have become in spite of this obstacle we call AD.
I'm with you. Although I have said before that this is not the path I would have chosen to give me strength, my AD journey has certainly made me stronger and more independent. And as with every life experience, I have learned so much from it.
I finally came up with something positive in this AD journey. My husband is 56 and has been diagnosed for 2 1/2 years. My 28 yr old daughter, who lives in NY city, had been having a terrible time coming to terms with the changes in her father. It upset her to see the changes each time she visited. In October she decided to take family medical leave to come home and spend time with us. She has been home for two months and it has been the most wonderful gift I could imagine. She's been able to spend quality time with her father, playing music, going for walks, baking him cookies, etc. She flew her younger brother home from Argentina for a surprise at Thanksgiving. She and I have grown closer than ever. She has to go back to work next week but I'll always be grateful for these two months we had with her here at home.
Hildann...how wonderful...you are right, neither you nor your daughter will ever forget this time. My son was wonderful with his Dad early on in the disease...taking him on trips, golfing, going to the movies...now he can do nothing for his father and he can't bear to watch his Dad in this near vegetative state. I tell him he was there when it counted...and I know you feel the same way about your daughter. What a gift....
There are bright spots in this process, but you have to really look for them......
I read the title of this post when I first come home after being gone for 3 months. I never opened it because I can't thing of one positive thing about the last ten years.
Our kids have be great, but they were great before, also. If I had to find something, I guess it would be that Bill will now eat all my favorite foods that he used to dislike.
Nope. It's been over three months and I still haven't come up with anything positive... Anybody else come up with anything new and positive??? If not I'll try again in three more months...
This would depend on my mood at any given moment.Living with AD is like a roller coaster ride,some days I think I can handle it(his good days)other days I can't think of anything positive either.
Something positive? I know I'll never be married again. That's 50K on fancy wedding I'm going to be saving. Spend that money instead on fancy psychiatric facility for me by the ocean.
I am sometime thankful that I have this opportunity to be helpful to another person, especially my wife of 49 years. I thank God for his help during this very trying time. I never would have choosen this experience but now that I have it, I am going to try to make the best of it that I can. I have had so many friends and even complete strangers say that think it so wonderful that I am taking care of her with so much dedication. It sure isn't easy but it does have it's moments of satisfaction for a small piece of the job done well. There is a lot in this realm that I would lkike to talk about but Joan does not want us to get into politics or religion. I can easily do without the politics but I would like to talk a little more about my spiritual leadership. But I also get a lot of real encouragement from youse guys!!!! Bill E.
I get what you are saying Joan. The disease itself frigging sucks!!! But, has living with and in AD hell, brought anything positive into my life ? Yes, of course. With every tragedy, every loss... there is always something to be gained. The key is being able to lift your heart out of the darkness long enough to feel the sunshine.
I am in such a foul mood today, so it is shocking to me that I am even pondering this.
Living with AD has taught me TO LIVE IN TODAY! - enjoy what you still have. It is never going to get better, it will only get worse. Once I accepted this, truly accepted it.. I was able to see the gift of what I/we still had. I am not saying there were not days when I didn't want to damn well exchange the gift *wink... but, for the most part once I reached acceptance, life as it was, then/now, I treasured it.
I learned many many things.... from hope, to strength. In great pain, there is also inner journeys we must trek. Pain takes us places, we may never have gone on our own. I know I am a better person for the hell AD afflicted on my soul. I would have chosen an easier path to learn these "life lessons". But as my favorite quote says, "If you want to hear God laugh - tell Him your plans."
When I am in a better mood *wink... I will think more on this.
Like Nikki, my journey thru this horrendous disease has been the most challenging obstacle in my life so far bar none. that said , i feel i have grown as a person, the everyday lessons that could have taken yrs to learn thru personal experiences, i have learned in days living with this disease. like a paramedic, learns to deal spontaneously thru dangers to save lives, so have I, to save my own life in time of immense despair. becoming more compassionate, sympathetic to others pains besides my own, and finding i have the internal strength to see this journey to the end -to come out ahead a better person thru sacrifice, severe personal loss and insufferable efforts will surely mold us into more decent human beings once this part of our lives comes to an end. divvi
I guess this would be a positive - Today I had to take my sister to the hospital for a minor proceedure. I left my wife at day care, picked up my sister, and drove one hour to the hospital. After the proceedure she suggested we go out for lunch. When we got out of the car I started to take her had as I would with my wife. If I had actually done it I think the shock would have been too much for her. When we went back to the car, again caring for my wife prompted me to open the door for her and help her in. When I went back to the driver's side, a woman sitting near-by commented "there's a real gentleman". I'm quite sure I would not have done this if I weren't in the habit from helping my wife.
My experience is somewhat like Divvi's. I say to myself that beginning at the time of my husband's diagnosis, when I was 56, I started to become a fully mature adult. Having relied on my husband all through my marriage for many things, as we all do, I never learned to take care of so many of the important facets of life. When I look back at the number of important decisions I was forced to make over these last 4 years and the new areas I had to bone up on, I'm thankful I was able to become totally self reliant. It was a hard way to do it, but it was about time I did. Ditto on the compassion and becoming a stronger person.
My husband of 25 yrs and myself spent most of that time angry and fighting. It was awful. The ex was always involved. When hubby got diagnosed (2003) our lives changed. He became very calm and we began to enjoy each day. Life had to become more simple. I was able to do what I had wanted to do for years, get closer to God and find out more about Him. This is such a difficult disease but at least it is not painful. I thank God each day for getting us through the night and giving us another day. I am enjoying the little things more. I hope I am becoming more patient and loving. I have to trust God to help me each day and I am getting better at that too. I would like so to be able to do things and go places but right now that is not to be. Sometimes I feel all alone and have to remind myself that God is here and that is what gets me through each day. He has been very good to us - we have a home, a car, food on the table, good neighbors.
Knowing you guys! seriously, that's a very big good.
Otherwise: probably learning to relax, believe it or not. TO slow down. I always said I was going to retire, but never really did. Now we watch at least one movie a day; I am in some ways calmer than ever. When my mother died I was in shock and didn't cry after the first few minutes; it took me many years to cry again, because if you can't cry for your mom, who CAN you cry for? Now, with my husband, it's .. if I can make myself be calm with HIM, everything else is the small stuff and I can surely be calm for THAT.