Lately i have been quite pensative and thinking about how AD has taken its toal not only on my DH but how drastically my own life has been affected as well. Looking back, in the diagnosis stage I was still resilient that this disease wouldnt change our lives that much along the way just the outcome was the inevitable. Now with much more knowledge and handson experience, I believe the having to DISMANTLE OUR DREAMS for the future is what has taken the most out of me emotionally. Rationally, you know the disease is going to consume the body of your dear partner over the journey, but somehow it doesnt quite register til much later how desperate we become to hold on to our future together and the plans we held for the enjoyment of our latter yrs together. isnt that why we work and have 401k and retirement plans in place early on? just the connotation of the 'future plans' laid out in saving for the future, sets us up for mental destruction when AD or really any terminal disease hits. all those yrs the 'plans' were in motion. Now having to 'dismantle' them alone and in fear of what the future holds is terrrifying and heartwrenching to say the least. theres a saying that 'WE HAVE TO GET LOST TO BE ABLE TO FIND OURSELVES:. well i believe a lot of us are lost and looking -its so hard to try to assertain that we can find ourselves at the end of this long road. how hard is it for the rest of you to 'dismantle' the dreams? divvi
divvi, this is something I have thought a lot about. My answer is I don't know if I will find myself. I can only hope! Thankfully we had planned for the future, unfortunately it came too early on. Thankfully we had a significant amount of money set aside for our elder years. But I can tell you it's dwindled really fast. It's kinda like I told my Mom when I decided I needed to be home with Dh. It's only money, I may be a bag lady when it's all over but I am going to at least attempt to help him enjoy what time he has left. The dismantling came several years ago and thankfully still holding on, but I am preparing for the bag lady lifestyle. Hopefully I can do it gracefully. Robin
well I still dream of hearing a loon on some secluded lake,enjoy the fall woods with my dog,sit along a trout stream an listen to the babbling water,hell even enjoy a few beers with old friends,I guess the dreams are what keeps us going hoping that somday...........
Having to "Dismantle our Dreams" seem to be a very integral part of AD, I sit here looking at retiring in 5 or 6 more months. I don't what I am going to do with myself but become a full-time caregiver, I'm not complaining this just seems to go with the territory right now. We sold our condo in Florida, we won't be retiring down there now. I sold our beloved two seater sports car (we've owned sports cars for almost twenty years) last year because I needed to get it out of the sight of my DW who still thought she could drive it. I feared that DW would get in it and take a drive, wind up in an accident, hurting herself and several other people. So I finally convinced her we needed to sell it for "financial reasons". I have other things I want to do but they involve traveling, that's pretty much a thing of the past.
What does the future hold for the next four or five years? I don't know, but I do know that life is pretty much on hold until we get through this stage of our lives. We can't lose hope, we need to keep ourselves socialized and maintain some frequent contact with the non-AD world. I'm hanging on for dear life because I know it's going to be a bumpy ride.
divvi good topic. As I was driving to see Bill and back home again I drove past so many places that once meant so much to both of us. Work related places and fun things we did together. Just this week I got a call from someone to take the CPR class Bill once taught. The pain won't go away and there is nothing to take its place.
I think we can all relate to this. We have IRA's but no pensions because we had our own business. We thought we had enough to keep us until death. But, we didn't count on AD at age 69 (diag), stock market collapse and dwindling funds, real estate collapse (4 houses, and warehouses). Now, the uncertantity of money is primary for most of us, I would imagine. Along, with loss of friendships and local neighborhood support.
We too, had hoped to travel some. That is out. Our whole future has done an about face and will have to be regrouped after we are over this disease. If he outlives me, he will have to be placed. If I outlive him I may or may not be physically able to regroup my life.
It is very difficult to adjust to a "new future." As some of you know, my husband lost all of "our" retirement money playing the stock market. It was quite substantial. I had been working to pay down the principal of my rental house, which would then become my contribution to our retirement.
My new employer offers Aflac. I am going to sign up for a cancer policy for both of us, long term care insurance, etc. Seems if I get all this before age 60, if I work for this employer for 30 days, I will always only pay the group plan cost. Who knew I would be grateful for Aflac. I am so practical now & realize I have to be the one to be responsible. Before I was considering divorce to not lose my rental house to Medicaid, but if I buy enough policies, I think I will beat the system.
The saddest thing is that I really don't want to go on a vacation with him. Filed my taxes today, and am due a $716 refund, which I plan to put into a savings account earmarked vacation. I AM going to go on a vacation, but it will be alone or with a girlfriend.
I remember the great time we had on our honeymoon in 1999. Wow have things changed in 10 years. & I feel like I am totally alone in planning for our future. And it is nothing like I had hoped for. I am just trying to make logical decisions so I won't end up like a bag lady like Rk mentioned. He doesn't seem to comprehend "future." Heck, he can't even remember who gave him what for Xmas.
I told him to return a sweater for a larger sweater that he got for Xmas. Who gave this to me? You? No, your brother. Last Xmas he couldn't remember that I had given him a sweat suit & thought it was my son's. (This after trying it on at Xmas to see if it fit him.) No recollection whatsoever.
I was told that all I would ever need was "a little change in my pocket." Now I am excited about Aflac! My, how your priorities change.
Thank divvi for bringing this up. It was cathartic.
When I finished my residency and started practice I was asked to cover the practice of an old-time family doctor who was taking his first vacation. He started his practice right after WWII and told everyone not to ask him to do anything. He was going to work hard and earn enough to have a good retirement. When I covered him he was in the early stages of Parkinson's Disease. He had no memories of trips or fun things with his wife and kids, and no hope of doing the things he had planned. I looked at this and promptly took a 2 week vacation (I had not had any during training). Since then I tried to do as much as possible with my kids (cub master, sea explorer, camping, etc.) and spouse. When the kids went out on their own, my wife and I started taking 1-2 major trips each year. We have managed to hit every continent. We can't do any of that now, but we have the memories (at least I do), and I sometimes show her pictures of one or more of the trips.
When we were young and poor Rotary sent 6 successful businessmen on an exchange programs to the Philippines. Left behind were 6 young mothers in the dead of winter in Massachusetts. We realized that the way home for the guys was flying over Hawaii. Couldn't afford it-but four of us met them there. We saw too many older couples using walkers and unable to eat strange food. Decided that we would travel to see as much as we could-and we did. While in New Zealand we met a lovely couple from the US. She explained that this was their last trip. I asked why and she explained that he had AD and couldn't handle travel any longer. I had not even heard of AD. I an so glad for these memories because there is no future.
Divvi, being older than most of the folks in this AD Spouse community (I turned 81 last Friday and Frances 83 this Monday), I guess we were very fortunate in being able to pretty much "live our dream" for about fifteen years after my retirement at age 60 and before AD began to have any impact on our lives. We had all the fun of building our dream country home and landscaping our five acres, we took extended RV trips for several months out of the year, taking us to all 48 continental states and letting us see New England leaf color in the autumn, Texas bluebonnets in the spring, golden Aspens in the Rockies, slugs the size of flashlights in the Olympic rain forests, desert cactus in bloom, etc. We learned the names of wildflowers and birds and trees everywhere we went and then forgot by the next time we were there. We planned and took "theme trips" where we'd buy books and study up on things like the Lewis and Clark expedition, or the Oregon Trail, or the mountain men, or gemstone locales, and then try to follow the same routes and visit the same locales in our RV. Every day was an adventure, and as long as we had a tank full of gasoline, full propane and fresh water tanks, and groceries in the fridge, we felt rich and were fearless about striking out for places unknown and then voting on which way to go at every crossroad! Always something wonderful over the next hill, so we rarely spent two nights in the same campground.The disappointing thing now, however, is that Frances can't remember any of that. But I still have that old wanderlust down in the pit of my stomach, and have visions of resuming RV travel after this AD journey is over. Plenty more rocks and wildflowers to look for, and while I'll miss Frances terribly (and her willingness to go along with just about any wild scheme I concocted), I can imagine enjoying sharing favorite places with someone new -- I don't think I'd want to do it alone. And with my son here to help me care for Frances at home, hopefully we won't be looking at a situation where the expense of professional care will wipe out our savings -- which have been impacted, but not catastropically, by the economic downturn. So bottom line, yes, I do see a future for myself.
divvi - great topic. If someone would have told me 30 years ago that this would be my life at 53, I would have thought them insane. Although our dreams seem to have dismantled themselves, I can't bear the thought of loosing the 1 person who has been my life for 35 years. I'm afraid this is too much to think about right now, as the tears just started flowing. I'll be back later. ~Di
Like Marsh and some others here, we packed a lot in while we were young. Since my husband's Dad had dementia in his 40's, we always knew this might happen and wisely, my husband prepared for it. The potential of him getting AD was factored in (consciously or subconsciously) with every decision we made. I am so grateful to him for being mature from a young age and so level-headed in his approach. Of course, we always harbored the hope that the disease wouldn't rear it's ugly head, but it did at age 59. So like others have said, I have my memories of all the travel we did and of our wonderful life together.
I am 54 years old and my wife is 62 she has early on set AD. I decided to quit my job and spend my IRA for the next couple of years. I have been home for over a year and on Cobra which will last 6 more months. I do not want to think about the future, but you are forced to face reality. I think I made a good decision, we have made several trips and in December we went on a 3 week cruise to Hawaii. My wife has alway wanted a convertible, so for Christmas she got one. I found out that she is unable to learn the new car and so I have to drive her.
I am very glad to have found this website. I stubled across it. It nice to know that I am not going thru this alone.
I also thought retirement would mean moving someplace warm, playing lots of golf & traveling outside of the US. Even after my husband's grandmother had dementia, never thought that it might happen to him...she was in her 70's, so my thought was she was just old. Then shortly after his mother started having memory problems, my husband at 50 years old, started having the seizure activity...so I thought okay, they will find a medication that works & he will be fine. Boy! was I wearing rose colored glasses, he started having memory problems shortly after. Then there was no doubt what the future would be. Thankfully, he was able to retire with benefits and sold our portion of the family farm, however, even though I think I might sound selfish, I do think about after this is all over where will I be. If he needs professional care will all our savings be gone? He would never eligible for Medicade. We now live on his retirement & SSD, so our savings is safe for now. I try not to dwell on the past, however, I wish this wasn't my future.
How sad so many futures up in smoke, huh? this whole thread may be a little depressve but its good to let it out and put our thoughts out there. thanks for everones stories, it validates our own knowing that others have lost so much. divvi
moorsb - Welcome and sorry that you are here. I'm 60 and wife 51. She has AD and small cell lung cancer. I quit and am living off IRA (which should last another 2.5yr). I've been home since Aug 31, 2008 with 12 more months of COBRA (at $1250 a month, going up 30% April 1). Some days are hard, others harder, but I didn't see any other way to do it either. We've been married 30 years, which is still a newbie to some of the folks here. I wish you would have found this site a year ago. Would have saved you some wear and tear. I've spent the last 10 days experiencing a change in behavior. She is beating the crap out of me. I outweight her by 150 pounds and should be able to take a punch, but her relentlessness seems to be cumulative, alternating between violence and weeping. We're tying Zyprexa that seems to take the rage down, but also knocks her out eventually.
My heart goes out to all you young ones that are going through this Monster Disease...We are in the older group, I am 80 an DH is 87. DH family is in Italy, so we were able to travel and visit them many, many times. The last trip was in 2007, Our four girls and their husbands and children were able to go for a Family Reunion,more to please DH. When we got back, he had forgotten the whole trip.It is sad that he won't be able to go back and visit his Sisters, but we have many beautiful memories (at least I do) of all the times we did go. We were lucky to have had our Dreams, it is sad that there are so many of you that can't fullfill yours.
Yes, grieving for the future I had expected is one of the biggest things for me now, not quite a year from my husband's diagnosis with LBD six months after we hit empty nest. I thought when my kids went away to school I would have more time and be able to write an influential book, maybe end up president of my professional society. Instead the program that I built at work looks like it will be dismantled (though my job is safe), though that is because of the budget crunch, not because of my situation. My other hope for after the kids went away to school was to deepen my relationship with my husband. He still wants to try to do that, but it doesn't work very well. We have done some traveling in the last year, while we still could--that is one good thing about early diagnosis. But I'm struggling to find meaning in how my life is changing. I need a feminist theory of caregiving.
I am lucky, seeing many post with mates that are violent or out of control. My wife is just becomming simple minded and she is very gentle she is also having motor skill issues, she walks very slowly but she is walking. I had dreams for my future like most here and this is not what I imaged either. I decided that I wanted to spend as much time with her while she was at her best. I will go back to work, when she is not here mentally. We made a good choice a while back and purchased long term health care policy. Reading the fine print is looks she only has issue with 1 of the 6 activity of daily living and she must need help with 2 before the policy will pay for home health care.
I have no clue about my future. I don't have a retirement plan..........I'm under 50 and have been caregiving full time in my home. First for Mom, and now, for the past three and a half years for DH. We didn't have huge savings to start with, and I thought after Mom passed (I was 44 then) that I'd return to school and/or work full time and begin my own retirement savings. PLUS, we wouldn't be depleting our monthly income so much. Well, things just simply don't go according to plan.
This is my second marriage. The first was a teen marriage that barely lasted 3 years. Left me a single parent of a infant (we split before the birth), no financial help from the ex, and struggling to get through nursing school so I could get off welfare and support my son. But this marriage....20 years.....with this illness and other emotional/financial hardships............sigh
I dunno. I can't imagine myself ever marrying again. I dream of the day my kids are happy and self sufficient and I don't have to be responsible for anybody other than myself and a pet.
Being a caregiver for this disease certainly puts a strain on any abilities to form another relationship down the line. the uncertainty and fear of having to deal a second time round is way to much for many of us to even contemplate now, so alot of us feel as you do NRealm. you are so young like many others here =Dave i heard that here before , and can only pray that the 'higher being' is reading thru these posts and weeping instead. Divvi
This is not the retirement I expected or hoped for. I wasn't expecting major travel, just one nice vacation a year and a bunch of one day bus trips all around this area. But even the one day bus trips are now out of the question.
I thought we would make lots of new friends and do lots of socializing in each other's houses in this new senior community, and we did that for the first couple of years. And my neighbors ARE doing that all around me.
I spent my childhood watching other people have a good time, and it seems that I'm spending my senior years doing the same thing.
I am trying to remember what it was like before AD. Oh, yes, I remember. I had freedom to come and go. I could talk on the phone with out interuptions and watch TV. I didn't have someone following me around all the time. I didn't have to answer the same questions over and over. We could drive to the coast and watch the waves come in. So many things that I can't do now. At 81 my life is going downhill really fast. Please, God, let me sit on the beach in the sunshine again.
We retired in 1986 with what we thought was going to be a "comfortable retirement". We moved back to Claude's hometown in southern Oklahoma, bought a house with a couple of acres, raised a big garden, did a little traveling and enjoyed retirement until Black Friday in October 1987. The "comfortable" part of retirement disappeared and we both went back to work until 1997.
In 1999, he had a mild stroke and healthwise started to decline at that time. Our daughter who is a middle school teacher in the Dallas-Ft Worth Metroplex area, suggested we moved down here so we would be closer to her and to better medical care. We finally made the move in 2000 . He was diagnosed in the spring of 2003 and its been downhill since. Thankfully, he is now under hospice care so some of the stress I was under, both physically and mentally, has been alievated.
I don't know what I am going to do when all this is over. The "comfortable" part of retirement is now gone and I'll be like many widows, a step or two above the poverty line. I may end up being a Wal-Mart greeter from a wheelchair or scooter :-) LOL All laughing aside, the Wal-Mart I go to has a couple of greeters in wheelchairs. I do know I"ll never marry again.
Yesterday my respite included a brow shaping and face wax. I will take what I can get. I was inquiring about permnant brow color and she recommended having my brows dyed when I had my hair done. Anyone ever done that.
divvi, I love the beach, can I join you & Bama? I will sit quietly & not cause any problems. Not a good day, I received a letter in the mail that as of April, our medical, dental, vision & life insurance will no longer be paid in part by my husband's retirement. If we want to keep our insurance we will have to pay the full amount. I knew this would happen sooner or later with the economy, but was hoping it would not. Can't even share this information with him, he would have no clue what I was talking about.
of course, dear Kadee, lets have a bonfire and roast weenies and marshmellows and search the stars and listen to those rolling waves!!!!! and lots of good soothing music! Bama are you listening? i can hear those waves and seagulls...and smell the salt in the air....and anyone ELSE who wants to escape for a bit with us! divvi
Kadee so many jobs lost and the economy in shambles it had to happen sooner or later, i am so sorry you carry this burden alone. we are here when you need to vent.
does Maui sound good to everyone? since its cyberparty-i say we go for broke..."_ maui, roasted pig hawaiian luau/weenies/marshmellows/huge bonfire-/hula dancers of course in all their regalia///fresh fruits..lots of COCONUTS:)//pineapple///lots of scantily clad male dancers eating fire:)) and torches for the beach to just sit and admire the sea/waves/stars and tons of pina coladas...and of course meeting all of you dear friends..Divvi
boy our we off topic again or WHAT????????????? i like the cyber party anyway...
I'll join the cyber party on the beach and then have a bonfire w/usual eats in the open desert of southern AZ and count the stars, but stay clear of sidewinders.
LOTS of rum..and any kind of tropical drink you can think up..love!myers rum and pineapple juice..umbrellas, and lets see--snorkeling, (Red will love this)-canoe riding, whale watching, private massage booths, spray tanning just in case its winter where you are coming from:)...what else, feel free to add what tickles your fancy...???
Where's Bama???? girlfriend, this may be as close to the beach as many of us are gonna get for a bit, so get over here to our luau!!!! :)write about everything you love about the water please???? its helps to escape in our minds==== divvi
I'm not into water sports of any kind too much, don't swim, snorkel, water ski, etc. but I love the ocean, the sights and the sounds(we vacationed at Virginia Beach every year for 10 years). I would love to sit on the beach sipping a drink and watch the rest of you though. I wouldn't be much of a life guard but I could holler "help" if someone was drowning.
I'd be on the beach with ehamilton. The ocean is lovely to look at but I've never had much luck going in it. I can remember when I was on my honeymoon (30 years on Feb. 10) in the Bahamas and I went into the ocean. I was too afraid to go too far out and got smashed by the waves. Had sand in places no sand belongs :) I feel safe on the shore.
Sun rises over the ocean are glorious. I have almost always lived on the east coast. Lived in Bradenton Fl. on the west coast for a while. Sunset over the water at The Sand Bar was even better. Ice cold raw oysters served over ice in a metal pan-paradise
My wife's sister and her husband live in a gated community on the beach. They have a community beach party with bon-fire, roasted hot dogs and marshmallows (or anything else you bring) every full moon night. We have joined them a couple of times. Lots of fun.
Bluedaze...I want to go the beach too!! I think I have "outgrown" my bikini...I play well with others and love the beach. I have had a rough few days so this is a good dream.