Surprised that I am up so early (6 AM)? Me too. I couldn't sleep. I invite you to log onto the home page - www.thealzheimerspouse.com- and read today's blog. Some realizations of how quickly AD changed my life suddenly hit me. After you read my version, I'd like to hear yours.
Dear Joan, I so empathize with your blog today. As each month ends and a new one begins I find myslef thinking..."Last year at this time we were"...still working, driving, planning a vacation, a happy couple and so on. From official diagnosis to nursing home in less than 8 months. Each month there is less and less to look back on with any fondness. I haven't given myself any time to really reflect on how FTD changed my life so quickly because it is still changing. cs
I gave up my lovely large house with lots of trees to move to a 55+ community because my husband wanted to play more tennis. It became my job to do most of the packing. It was DH's job to yell and scream at anybody he could find. He did well for several years.. As I was working full time I didn't realize that daily rages were becoming the norm. He started forgetting the names of places he biked to daily. Sending him to the store for milk often meant he came back with oj. Eventually for safety reasons I had to place him. Turned out to be a good place for me to live. Lots of classes and activities at our club house. I met lots of new friends-either widowed or divorced. We have pj parties and drink wine together. We look out after each other. Though this is not the way our lives should have been at least he is safe and I am reasonably content.
Joan, Thanks for you blog today. Sharing your journey along with others on this site is helping me move out of my denial that somehow things will stay the same even though we have received the "diagnosis".
Yeah. Me too. I'm 47. My youngest of 4 children is entering his senior year of high school. In about 2 years was when Jeff and I were going to backpack the Continental Divide Trail! And have some other nice 2-person trips for the first time since Rachel (oldest) was born 23 years ago. I cannot tell you how often this feeling wafts over me in recent years--the one where I think: Whoa...how is it that I'm suddenly 80 years old? (Or at least leading what I think would be a less unexpected life for an 80 year old.)
Well...one thing it does is make me very dedicated to: riding that elliptical trainer, eating lots of anti-oxidants, and keeping my brain sharp. Because, unless the cosmos decides to throw me another curve ball, I'm going to have something left at the end of this
Soon after my husband was diagnosed as Alzheimers my children counseled me to sell our 2 story home and buy a ranch style. We also had a swimming pool at our old home which i could no longer take care of. Abruptly our lives changed, my dear one no longer was the man I had married, and I was no longer the same person. I kept trying to live as we once had but it was futile. My idea of the remainder of our lives and the actual reality clashed During the following years I had to accept that not only was my husband becoming a stranger I but I also was and am a different person . Now, after his death in February,2009, I find that I am still completely different physically, emotionally , mentally, and really have no longer a connection with the pre-Alzheimers personality. furthermore, I don't have any desire to return to that person. She was too naive,too dependent, too ignorant of the realities of life that are important and those that are not. I now am trying to contemplate the past caregiving years and realize what lessons of life I have learned, the people I have encountered during our journey, and the strengths I have acquired . I have found all of us will learn to adapt to survive and quite often our lives ultimately benefit . So, go with the flow and do not resist the losses as you can't change and sometimes they turn into pluses.
I thought my life was going to be wonderful three years ago, we moved to Az. didn`t know it was AD, thought it was depression from retiring, he had a job waiting for him out there, daughter made her home bigger so we could live with them, I tried so hard to keep it normal the first year, how nieve of me, as he got worse I realized all of our plans of living in the warm sun was not going to happen, finally after some family problems-sil-I couldn`t take it anymore so we came back home, I gave up my home , alot of our things and now am starting all over again and to top it off now I am living alone, I do find I am a stronger person and can take care of myself, always had someone to take care of me. like joyful says "go with the flo you can`t change the past" Gail
Joan: I am either just not very smart or I am a slow learner. Maybe some of both. Anyhow, I am still in denial. I doubt what the dr's tell me and still think that I can do everything. It is starting to take its toll and pretty soon ( like now ) I'm going to have to realize where this is taking me (us).
Joan, I don't know how you come up with so many blog topics that are so much a part of our lives. I have been mostly reading since my husband died; not feeling a part of the struggle, but wanting to see what's happening with everyone else. However, this topic really hit home. It was just 2 yrs ago that I retired from teaching to move down to a wonderful community in Florida. It was my husband's discovery...The Villages...and he was so excited to be moving to a warm climate where he could play lots of golf, go out to eat, and ride around everywhere in the golf cart. Although he had been diagnosed a year earlier, his brother had maintained a workable quality of life for 7 or 8 yrs. when he was at about my husband's stage---we hoped that he also would have some time to enjoy his discovery. We still played some golf when we first moved down here. But how quickly it all changed...in 19 months he became unable to play golf, had difficulty with balance and walking, couldn't dress himself, couldn't stay alone, unable to toilet himself, developed an infection and was hospitalized for a week, in rehab for a month, in assisted living for 2 weeks and then died the day after our 26th wedding anniversary. I had no idea it could all happen so quickly. Even now, 3 months later, I still go through it all trying to figure out if I could have done anything differently, wonder what was going through his mind in those 19 months, etc. The move down here was his gift to me; I love the community I am in, appreciate the Florida sunshine, and plan to stay here...at least for now. I guess when I read other comments it makes me glad that neither one of us suffered for as long as so many others have; he would have wanted it to be fast. But there are times when I would give anything to have had him with me for a little longer...it's hard when it happens so fast, too.
Flgirl, so happy to see you post again. its a very hard transition when it happens so suddenly but we all seem to agree that the quick passings can be a blessing too. hope to hear from you again soon! divvi
FLgirl- The villages is one of the nicest places I have visited....love the way golf carts can take you all over, even the bridge over rt27. I have an aunt and uncle who retired there, and I enjoy the way the community is so active...like the bands in the street, the nice restaurants, and the accessibility of all the amenities. You are very fortunate. You just reminded me that I am overdue to visit them.....
Joan, somedays I look back, like you, and think that event was only 2 years ago or 3 or 5 years ago and look at my life then to what it is now. We never really had long term plans though did have a few very vague discussions on when I retired. That was a blessing as I am now not looking at all kinds of plans for the future changing.
With each change in him, I look and think a few months ago he could still do that. Some days it bothers me a lot and others I can accept the changes - they are never easy.
As he gets closer to the end, I find the concept of the future very scary. What will my life be without him in it at all? There is also the part of me that is looking forward to a life without AD and finding out who I am after all of this.
The EVENT was in December 2003. Since I ended up the the hospital 3 weeks later as well, we decided to retire in August 2004. We drove across country. No problem at that point, but it was the last long trip we took. We moved into a 55+ community for active adults. We had a couple of years of being able to drive into New York City, or take bus trips and did one cruse before we found out what was wrong with him. That was May 2007.
No more trips into New York City. He can't drive and I haven't driven on a highway for more than 5 years. He couldn't take being in my daughters tiny house in Queens anyway. And it is too far away not to stay overnight. My last all day event (a bus trip to a museum in Philadelphia) was more than a year ago. And there is no such thing as a social life. And the house is probably too big as well.
If I get sick we are in real trouble, and it is possible that I already am sick.
Joan--what a good topic--I have the same feelings you have described. It was less than 10 years ago that I helped my Mom divide up her precious possessions in preparation for downsizing. Now, in a flash, my life has hit the fast forward button. For instance, packing up my good china and crystal--entertaining has been something I've given up forseeable future due to lack of time--will I ever unpack them and use them again? Seems like a trivial thing, but it's a symbol of the huge difference of my life now. I made the decision to stay in our house, partly because of the very issue your blog describes--I'm not ready to let go of such a big chunk of my "old life" yet. Of course, our area doesn't have the type of setup you and Sid are moving to--the only thing available here are continuing care retirement communities, which again, I toured with my parents less than 10 years ago. It is somewhat surreal at times to feel that I've been thrust into "old age" issues starting at age 56.
About 3 years ago while talking to our PCP I told her I was thinking about moving into town so as DH worsened it would be easier to get help. She stated that if we were thinking about that , we had better do it soon as DH would have a harder time adjusting later. He was DX in 2002. After some talking DH and I decided to sell our large house at the lake, and move into a smaller, older home in town. We moved two years ago and it has not been smooth. Maybe it was to late and I did not know it. It has been easier on the kids and getting help. I downsized and do not regret it. Do not need all that clutter at this stage, my priorties have changed. I feel the less I have to deal with (like clutter) the more time I can do what I need and want to do.
We spent several years traveling the USA in our motorhome before we found out about the AD. I treasure that time. He was so happy! Now the passage of time is measured by little losses almost daily. He has already lost most of the big things. I think at this time I feel I have been at this for so many years and have many years to go. Can't look forward just yet. Granny
In 2004 we both lost our jobs, gave the house back to the bank and moved into our Motorhome. Our dreamed had been to work and travel when he turned 55. We missed it by a few months, but did it. In October 2005 we started our Workamping career - worked the southern Oregon Coast, then NH, then FL except the park in Florida was horrible to work at. We decided we needed to come back to Vancouver to help my sister since her son had bailed on her vs stay in Florida. I regret that decision now. We came back and for the next 2 years took care of her yard, helped do home repairs/maintenance, and helped with her husband. When he died in 1/08 we felt we were free to go.
By now Art was really showing short term memory loss (started in 2006 - seemed to be triggered by the abuse we took from the managers and owner of the park in Sebastian.). He went to the doctor, had the CT, neuropsych testing, but we heard nothing so assumed it was just depression. We took jobs in Pahrump, NV, fell in love with the country and people but lost those jobs due to park politics. It was last summer that I got a copy of the neuropsych report where I read dementia and depression.
For the moment our Workamping career is over, but I am still trying to get finances set (SS is approved to start this November, SSDI is in process) so we can do camp/park host jobs. If I choose carefully they will be low stress - not big parks - that he will just have bathrooms and campsites to clean. I will do that plus collect fees. He wants to go back to NH to see his sister and dad, both of whom also has AD, so am trying to figure out how we can afford that next summer. So much we wanted to do, but so little time left to do it. I have watched him to things around the MH, but now I am having to double check he does them and correctly. Someday it will all be left to me to do.
As long as he can travel, we will. He will drive as long as he can, then I will. When he can't handle the stress of changing scenery, then we will park.
It's the sooner rather than later issue that has spurred me on. He has already warned me that he needs ajustment time, and not to push him into activities or socialization too soon. I am thankful that he was able to verbalize that to me.
Joan, it is so good that he was able to verbalize some of what he was thinking. Mine lost that ability early on and I think he just depended on me to speak for him when he couldn't find the words any more. One of the things that I find very interesting is that even though he is in stage 7, no longer talking or doing andy of the ADL's, he still likes to see and be around people. He doesn't recognize most of our friends anymore but that doesn't matter, he will still try and shake a person's hand if they put it out there for him.
I am very thankful that we did as much as we did all through our relationship, looking back and seeing the changes in him in a relatively short time is often staggering.
My DH did verbalize the agreeing to move to town. He just can't remember it!!! Some minutes he is happy in town, the next he is furious at me for moving. He claims I made his sell the lake house. He does that to everything, even if we just talked about it. Ho Hum...such is life in the AD lane...Granny
Grannywhiskers - ditto Sometimes I feel so warm and comforted thinking I am having an indepth, insightful conversation with my AD husband - like we have had in the past. Only to find that ten minutes, two days or two months later, he has absolutely no recollection of it and thinks I am making it up. Usually gets upset with me, but I think he is really upset because he knows he can't remember. As you said - Ho Hum.............
Oh Joan, I here you girlfriend. 3 yrs ago, after just 2 1/2 yrs of marriage we bought our dream home. We were thrilled to have the Bear River running through our back yard, tons of yard for Dylan, plenty of room for Mom, and so many dreams. Jim began creating my dream garden, it was a 5 yr plan. We sat on the front porch in our rockers and talked of retirement and travel. So many plans, so many dreams. Then depression, anxiety and suicidal ideations began. Then the dx of FTD and it was as though someone took our little bucket of hopes and dreams and threw them to the wind. Now I sit here with two little boys, unable to do the home maintenance, unable to even mow more than the front yard. I'd love to move to an adult community, with no maintenance, but they don't allow little boys, lol! We shall see, one day at a time.