After a quiet weekend, I have been doing a lot of thinking about my life now and in the future. I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog about the Alzheimer Tunnel. Just wondering if you felt the same way and what you hope for when you re-emerge.
OMG - For years I thought I was all alone, too. This is from my journal--the tunnel. It could easily be an abyss, a cave--it's an exteme isolation even in a crowd. I just 'WANTED MY LIFE BACK.' I didn't want to hear any 'it'll be OK,' messages. But, it will be OK. Joan, you will continue on this path of enlightment you have chosen to help others. You'll be another Jacqueline Marcell. You will become the resident expert--it's so hard to get away from it. Yesterday at a family event for out-of-towners, people who are all close, I was told about a BIL whose wife 'can't leave him alone.' They used to live nearby, I didn't know this was happening. When it's over, people rightfully put AD behind them, but it sticks to some of us in a different mode, it becomes part of our lives, but that's not all there is. Last night my g'son had a bbq party here, no one ever mentioned AD.
"August 1997 - For a long time I had envisioned myself standing alone in a giant empty tunnel, easily big enough for an 18-wheeler, with room to spare. Round, with plain, smooth, concrete walls, its location was someplace underground, but the surface of the earth was not very far above me—maybe there was a park. The tunnel was silent, hidden. Somewhere there was a dim light because I could see. But I couldn’t see the end of the tunnel, maybe fifty feet in front of me, just a darkness that completely filled the tunnel round, like a scrim one could walk through, but not see through. I had no sense of any emotion. I was not frightened, not waiting, not moving, not thinking, just standing—isolated and safe. Whatever I had become bound up in, I knew I would get through it, and I’d be all alone--my inner core was bringing up reserve resources, protecting me."
Sometimes I feel like I will not make it out of the tunnel .It seems as if everything in my life is about AD. I try to keep up with friends who do not have an association with AD. Since they don't know about how AD effects my whole life, I do feel out of it. Their lives are so different. My DH seems and looks perfectly healthy and has the ability to cover up his disability. At home things are so different. Walking three houses down the street to the mailbox is his idea of exercise.
i remember when i was younger and family/ friends talking about their babies when they were little and on and on blah blad,,on the phones and i couldnt wait to get off the phone. somehow now that comes back to haunt me. i am now the one talking about a 'child' that nobody really wants to hear about during phone calls. AD consumes our lives our minds and our souls, so i am not sure how long it could ever take to get 'over it' or not. it will more than likely stay with me forever . i wish i could do like this computer, 'delete' the bad stuff and 'save' the good for later. divvi
I'm fully in the tunnel. I don't even have the energy to try to do anything, except some online forums, that aren't in the tunnel. It didn't help that before dementia caregiving, I was the one with the medical problems. But during those problems I found the online world and met friends there that had nothing to do with my medical problems, so I almost automatically am doing the same thing now.
But there is no question that I am fully in the tunnel.
I saw one of my friends from my years of quilting activities today. She asked what I was working on regard to quilting. Told her I had tons of ufos - unfinished objects - that haven't been touched in over a year. I think, if I remember, I sat down when I quilted and only concentrated on what was in front of me. Or, at least I THINK that was how it was :-)
I think the tunnel analogy is so true for me - the "world" isn't far away, but I seem to get stuck in there while planning in my head "I'm gonna" Quilt, swim, visit friends, have lunch again with friends,......... I haven't figured out how to change gonna to will with a plan.
I still read you guys alot and just wish I had things to contribute. Once in a while I do. On this particular thread I know what you all are saying about the "tunnel." If you can picture it, I was in that tunnel for what seemed eternity, and there isn't suddenly a bright light at the end of the tunnel. There are some little peeks of sunlight, and still alot of darkness. I guess I'm in that "dawn before the light" phase.
New Realm - since you just posted recently this would be a good time for you to go to your profile and enter a * following your name (see SandiD*. This was discussed on another thread and indicates you are a widow or widower and new posters will be able to identify with your situation better.
I hope you are doing well and starting to get your new life together. Good Luck. Lois
I also, am consumed by the Alz. world we all share. I have little desire to participate in other activities away from my Alz. world. It seems whenever you start to think about starting a project you have to quit and tend to dh. I think, in my case, at 72, I have slowed down considerably and have a lot less patience than I did 50 years ago when my 3 kids were little. My attitude now is one of surrender to the disease and someday when it is all over try and reinvent a new life, if I am able.
My husband's primary care physician just left the house. (His practice are all "house call doctors") What did I expect him to say...I don't know. I'm always depressed after doctors visits. He said he has to tell too many patients that all they can do is treat the symptoms - because there simply is no way to reverse many diseases elders suffer. I know that! I just don't want to hear it. He's more like a visitor in our home than a doctor. We love him. He is so good with DH. DH greeted him with his usual manners, but for the rest of the visit, he didn't answer any questions, just sat there, glaring at nothingness.
Dr. is as sad as I am to see his decline in the past year. He hates A.D.everybit as much as we do. He hates that he can't "fix it". I hate to be reminded it's not "fixable". A'int this just the pits? ...sigh.
Didn't know I could (*) my name either, but it's done now. Imohr, I was 73 when DH died, you'll have a new life. AD will be a strong shadow, but it won't be all the time consuming. In some ways I have more patience, but a lot less with those who think insignificant social things (in my view) are all that important.
Oh the tunnel how lonely and frightening it is. The other side is scary too though. The problem is when you are alone it takes a long time to put your feet back on terra ferma. I found I suddenly had nothing to do. I don't think we realize the extent this disease takes over our lives until it leaves. Changes in our loved ones are so slow and subtle we just adapt. When you suddenly have your life back you are adrift. It has taken me months to find a direction. My husband died in Sept 08, not of AD but of a heart attack, a blessing he didn't have to take the entire long journey, he was stage 4 at the time of his death. I still have such mixed feelings about his death. I find I am remembering only the good times and not the AD devil so much any more. The down side of that is I am sad and miss the man I married not the man that died. I started a journal of our journey only 5 months before he died, but to reread my entries puts me back in touch with where my life was not how I want to remember it. You get torn between the two. I do know that just before he died the man I married was there, he was clear thinking and kind. I was shocked. His doctor told me that when the body senses it is in mortal danger the mind becomes clear. At least the man I married got to say good bye.
Joan you have such a gift that when you reach the the end of your tunnel I am sure you can use these talents to "reinvent" yourself. Not sure you will ever be able not to be caring and nurturing to others .....its in your genes!
I am where you are...supervising and assisting ADLs..but the symptoms are there that lead me to believe I will be doing more soon. So far try to keep one appendage outside the tunnel but am not willing to relinquish my husband's care to others yet....so the conflict begins.
What do I want to de when I emerge....hmmm. Be able to remember our days together with good memories. Hopefully I will be selfish enough to be in good health and have the energy to do all the crazy things that I now dream about.
I feel that I am at the same point inside "the tunnel" as well. My DH needs assist, but not totally dependent...yet. I fear the day that it comes, but won't let myself think of it too much. I try to get out for a Curves workout twice a week--this helps. We recently returned from a week's vacation in San Diego, and though it was difficult travelling with him at times, George and I managed to enjoy ourselves too. I agree with you scs, I plan to hold onto the good memories we have, and hopefully will continue to have for some time.
Joan, I would like to say more on this subject but I would have to talk about religion, especially Christianity, which is where I am. feel free to scratch this post if you want. I would have so much trouble with that tunnell if it weren't for my belief. That is one reason I started our Blog on Carol. I will not go further here because you have requested it, but it is sure hard to be quite. God is my Comforter!!!! Bill
Boy, do I understand what you all mean. I spoke earlier of being 'on the edge', but that just refers to conditions inside the tunnel. I am a prisoner in there, like being sucked into a black hole in space. My 'real world' visits consist of grocery shopping, dr. visits, and outpatient blood lab visits, all with DW in tow (or I should say in push..in the wheelchair). Even if I could get out alone by having daughter Becky or a friend sit with DW for a while, I could not compartmentalize that hour or so because I would always be aware of the fact that it is only a temporary thing, with a finite end. I believe the only way out is to find a second LO that would be able to fill the void without replacing the love of the spouse. But how and where do you do that? No online catalog for that. Hope you don't think I'm a pig.
I'm not fully in that tunnel yet but the fear of it is with me all the time.
Imohr, thank you for the suggestion of an *after the names of the ones who have gone through this journey and can tell us what it's like on the other end of the tunnel. It's hard to keep up with who has been through it and those who are still in the trenches.
Texas Joe, I don't think you're a pig in the least, but don't underestimate your OWN powers. A lot of us have found that, lonely though it is, we do NOT need someone else to lean on. Someone else to enjoy, sure, maybe have sex with, but we can stand on our own two feet. We put up the wall between us and our spouse, and after they're gone it still remains.. but we can manage alone.
TX Joe - I've known people who have found another LO w/out taking anything away from their AD partner. There's a big moral issue behind all of this, for or against, all must chose for themselves. But I do know that love is not finite. It did not happen to me, but I believe it is possible to love more than one at the same time--as a mother loves many children--even those who are not perfect--especially those who are not perfect.
TX Joe--You touched upon another important point. We are told, over and over, you must get respite, you must do things for yourself, etc. However, I find that several hours don't really give me much of a mental break. Sure, I can get a few things done, but as you said "I would always be aware of the fact that it is a temporary thing, with a finite end." Yes, yes, yes! Of course, any break is better than none, but I find that I'm always watching the clock--it's not really very relaxing.
briegull, I would love to be that kind of person, but I am a "team player" by DNA, meaning that is the only way I can be happy. I was never so miserable as when I was on my own in Geneva with the Foreign Service. So much so that I had to resign and come home. I am just a half-person; I need another person to make me whole. Sure, when I was young and strong (could clean and jerk my own weight - 178 lbs.), I felt I could take on the world. But after 46 years of having a wonderful partner to share life's ups and downs with, being older now, and weighing 145 lbs. I don't think I could take anything on. I don't like being a wimpy dinosaur, but thats what life does to you eventually. Sorry to be such a complainer. Let's go read some of the funny stuff.
Maryd's observation that her DH looks healthy and has the ability to cover up his disability when outside is my story as well. Two very dear friends keep pushing me to use the four hour caregiver shift covered by insurance to get out of the house and back into the world. Easier said than done. I have been sucked into this tunnel gradually and now feel uncomfortable when I venture back into the world. When I attend group functions, I feel set apart - walking wounded. I so miss the man that my DH used to be and strain to remember.
Brooke do you feel uncomfortable because you feel guilty being out for a fun time without him? I felt that way and pushed myself to go to events with other widows, yes other widows, as while I have this precious man I love and care for at home, the man I married is no longer there. I can so relate to a the saying with AD there are 2 deaths, the first is when the person you know, the man you married dies and then when his body dies. I realized that I needed my health and my sanity in order to appropriately care for my LO. Guilt is a worthless, waste of time! Hugs.
Well, I DO get out and when I do I make it a conscious choice to adapt to the "other" world that is not AZ. I let my husband's situation affect me only in that I avoid making commitments on sortof the midterm basis: if the commitment is far enough ahead, like a board meeting, I can schedule someone to come in or put my husband to bed early; if it's a sudden plan, I can either beg off or go, depending upon the moment. It's the ones inbetween that are problems: saying how he'll be next week, for instance.
I get my enjoyment from volunteering, at the zoo, on non-profit boards, etc, so no, I don't feel guilty. I would (and this is a personal thing) feel guilty if I was going shopping at the mall for things I might need someday; I'm old enough that I'm simplifying my life and disposing of possessions rather than acquiring. Interestingly, this man who used to be perfectly comfortable with me going away for weeks halfway across the globe (and still would be, though I wouldn't) always resented to some degree my local or near-local commitments if they happened within earshot. Yet last night there was a long phone call resolving some questions about the Maine land-trust, and he sat there quietly and didn't make a single grumble about dinner not coming.
So enjoyed reading all of your comments. I think when I'm not in the abyss I'm definitely crawling around in the tunnel. It is hard to enjoy any respite since I know it is so fleeting. I know I have to go home again and home ain't necessarily a fun place to be! Today I met with a care agency and am planning to leave town later this month for 4 days to watch dear friend's son graduate college and then see my granddaughter turn 4. This will be my first experience leaving husband with hired help and I'm overjoyed and scared to death. Overall I do quite well getting out with friends and making some time for myself but I can never totally relax. I think I do better than some in this regard because I watched AD kill my caretaker mother before it claimed my father. I fully believe caregivers are more likely to die before their patient and I am fighting tooth and nail to not be one of those.