Today's (11/7) Blog topic was inspired by the "rehearsal" Sid and I had yesterday for our panel discussion for an Alzheimer Conference on Friday (11/9). What is the most important impact AD has had on your marriage? Has it brought you closer together? Torn you apart? Mellowed you?
In the beginning, it really tore us apart. According to DH, I was trying to "take control" of everything. I was called everything from witch to General Jayne. Finances were somewhat at the heart of it all. When the Dr. said, "Let Jayne handle the checkbook" I thought he was going to get violent. He didn't. Of course, I was just trying to do my best to manage myself, the disease and all the bills, appointments, etc. (we have 12 rental properties). I was at my wits end most of the time. I retired in January 2007....this helped me have more time with DH as well as get more rest and be less stressed out. Then the Dr. suggested seroquel last June. WOW what a difference this medication made in DH's personality. It is still working. He has developed major motor skill problems. NOW, I believe he forgets the early emotional maltreatment. AD has brought us much, much closer together. One reason for this is because we spend a lot more time together than we did prior to my retirement. We cuddle in bed more, he is much more dependent on me for everything. I cook more, I am more relaxed, I am not over-scheduled with anything. Although I take time for myself, I have learned to say "no" to things at church and service groups. I just do what I want to do and have fun with my girlfriends, going out to eat and shopping. I am even getting manicures now and loving it! So.......part of the postitive side that has erupted over the past six months or so is my reactions. I believe I have learned a lot from this board and all the reading material that the support group gives and I think I have changed, or "mellowed" as you put it. I still take one day at a time and sometimes think about the way things used to be....DH working, me working and catching up with each other between it all to enjoy love and sex and time together. But things ARE different now. It has taken a lot of adjustment, but this is where we are NOW and that's OK.
AD has broken our emotional bond. It thus far has tested our marriage to the max. Because I know much of DH's behavior is due to AD I cannot place all blame on him. If I didn't have AD to blame it on I'd be out of here. It isn't easy to hear accusations that he "saw me sneaking out and having sex with someone" when in reality I was sleeping right next to him. Being human, and emotionally sensitive I find I cannot warm up to him during those times when he is lucid. He doesn't understand that, of course. But my personal pain doesn't turn on and off like a light switch in the way his mind does.
I have to agree with New Realm....It isn't broken but it is getting there. The constant checking on me and what are you doing questions. I haven't been accused of having sex with someone else but I can see that coming. Though he did ask for a divorce one time and was I ever pi**ed!!! Here I had work so hard all these years and he just wants to divide it up!!! Not a good day. The other night I was just hopping that this would be quick for his sake as well as mine. How selfesh! I hope that one day I can get to where Jayne is and make my peace with this.
New Realm - still no luck getting into your blog. I wonder if I have to sign up to get in?
Amber, don't be so hard on yourself....you are in the tough part of the disease....the delusions, paranoia, fear, anger etc. And that's just him...we haven't even talked about all the emotions that you are going through. I have been where you are now and it was not pretty....I got to the acceptance not with grace and humility, but fussin', screamin' and fighting all the way.
I pray for all of you that the journey you are on is an easy one and does not last as long as ours has. I have long wished that some other problem would take him before we entered this, what seems like eternal, end stage. But, obviously that is not the plan.
Just remember that Alzheimer's changes everything...I have seen it rip a good marriage apart, heal broken relationships, bring a family back together and throw other families into a total state of denial. In order to survive you have to learn to roll with the punches....that's probably why I am so punchy after all this time....LOL!
AD has been a slow motion implosion of our marriage over the last 6 years. Every few weeks, it gets a little worse. Medications helped slow it down. What else can I say about a slow free fall into oblivion? For example, today M and I had lunch at a nearby Mexican restaurant. She couldn't operate the auto seat belt latch. She has trouble getting in and out of the auto and walks hesitantly. She spilled food down her front in the restaurant. I had to work the zipper on her coat. I handed her a kleenix to wipe her nose twice. She didn't say a word the whole time. We still love each other.
My situation right now is more like Jayne's. The first few years were very difficult. Handling those arguments and telling me what a bad marriage we had when actually we had a happy marriage for 25 years. The doctor put him on resperdal when he was so upset and angry about not driving. Things settled down then and he is pretty easy to get along with most of the time now. It is a learning experience, knowing what upsets him. Now he has no idea he has Alzheimer's. He does not always know that I am his wife, but he loves the hugs and hand holding. He feels safe with me and I feel protective of him now. I do love him and it grows in a different way now. I miss our marriage, but I try to adjust (not always successful).
Our second marriage of 32 years has been a marriage of sharing, love and partnership. AD entered the picture. We have been through many periods. Anger and agitation, early over driving and his truck. Seroquel and learning how to handle things keeps that mostly under control. It has brought us physical closer together than I can stand some times. The love is still there, but I feel more like the mother than the wife. Now I have to do everything, and I am finding it increasingly harder to find time for exercise and personal time. I used to call myself the Pampered Princess, now I say the Pampered Princess is dead. Gene was my best friend, who became my lover and husband.
Thank you all for your comments. As always, you have been very helpful to me. I enjoy hearing all sides of an issue. And I am especailly grateful to know that my emotions are shared by many. It makes me feel less guilty and less alone.
My husband and I had a very good marriage. We had so much fun together. He was an outgoing, gregarious and confident. Unlike many of you who have commented on anger and outbursts, we have not experienced that. Now he is docile and dependent. Everything is ok with him. He rarely makes any decisions. The relationship has changed to one where I feel more like his mother than wife. Of course, all responsibilities fall to me. We used to be able to rely on each other for support. Now I can't feel the intimacy any more. It's no longer a partnership. I hide my distress from him because it would cause him so much pain to understand fully what his disease does to me and my life. I know he craves the intimacy we once had but it's such a turn off now.
I think the biggest impact on our relationship is my husbands dependency on me. We were always so independent. We made a great team but we also each enjoyed our alone time. That has changed as the disease has progressed. The only thing I can do now without him is go to work. I don't know what I would do if I didn't have my job. I make all the decisions now, handle the everyday problems and most of the chores. The lost of both of our independence has been very diffiucult to deal with. I sure miss the good old days.
It is like being married to an eight year old. He can marginally function in an adult world. He can not manage adult empathy, at all. I cannot go to bed when he goes to bed. I find excuses to stay up. But later, when he's asleep I can crawl in, cuddle and sleep well. Funny, huh? Then it's "him" I'm sleeping with (the soul of the man), Not that pre-adolescent AD LO that rattles around all day.
I feel like I am walking around with a big hole in me where my husband used to be. All last year I desperately tried to fill the hole with anything...wine, shopping, being on the computer, ovrwork, watching tv, denial, flirting, doctors appointments, health cures... Nothing worked...still a gaping hole. I miss who I was with him, I miss who we were. We had such a great marriage for 17 yrs...the last two years have been extremely challenging. I still love him with a fierce protectiveness but I no longer feel cherished or taken care of. And the big wound, the empty spot is still there...now I can just look at it without rushing to fill it.
Back off, ladies, you'll have to stand in line. Errol is mine. So is Burt Lancaster, Clark Gable, Bob Mitchum and a host of other long ago matinee idols. Can you get excited about any actors today!
Same here, folks. I still like to see John Wayne movies. Charlton Heston's biblical movies were neat. "High Noon" with Gary Cooper and Grace Kelley (1952) is hard to beat. Even though modern movies and actors are technically very high quality, they are not talking to me. Netflix has all the golden oldies that we like.
Well, I must admit that Errol is a recent discovery for me since he died before I was born! But now, having (as C says) discovered the joy of Netflix, I see what all the fuss was about. Last night I watched The Black Swan. Pretty good, but I'll still take Errol over Tyrone Power.
shoegirl, my sentiments exactly. I have been trying everything I can think of to try to fill the hole that has been left by loneliness and us being together. So far I have not succeeded. When my DH was at home and I was his 24/7 Caregiver, I kept pretty busy and still felt some loneliness and missing the way things were, but not as much as I do now that my DH is in a Nursing Facility. The house feels so empty at times. Everyone tells me to try to move forward with my life, well, OK, how do you do that? I was happily married for 27 years and its tough to get going again. I do go out to eat with my girlfriends, I go to the beach and bay with my daughter and my two precious grand daughters, I exercise, shop, watch alot of movies, listen to music, but, I still cannot fill the void this has left on me.
So, I guess I would say the most important impact AD has had on my marriage is being without my Prince and the loneliness you have to endure. It's the loss of being together and sharing life's journey together !!! On a personal note, the way it has affected me also is that, for the past 6 years or so, I have put my life aside to care for my DH, but, now I am again trying to find "ME", and that is the hard part !! I put everything I had into being a 24/7 Care Giver, but, when he went into the NH, I found out that I do not know myself anymore, I kind of lost myself in the shuffle.
I am going back to work part time starting next week, so, I will keep you informed on how this goes. I am going to be a "Concierge" at the Convention Center/Selena Auditorium for the Luxury Suites. All I wanted was part time since I go to see my DH every day. Should be a fun job and gets me out among people. Wish Me Luck !!
The positives you write about (things you do out with family and friends), and going back to work, being among people...........sounds like heaven to me. I too "lost" myself. My DH was very private in some senses. We didn't socialize alot except with family. Oh, we had friends from work, but rarely spent time with others outside of work. That was most of my marriage, pre AD. Now here we are in that longest stage (5-6) where DH is still too functional to accept daycare or a home companion for any length of time. I hardly can go to the bathroom without him. We go nowhere. Occasionally to sisters, but this year they all know that I don't want to take DH anywhere for Thanksgiving. He gets too antsy. So here we are. Home again. I won't go NH route because I refuse to "spend down" whatever I have now. I'm too young to retire, still have 20 years to go before social security, and the last 5 years of my life have been sacrificed in the aspect that I have no income of my own, and therefore no retirement plan. Thinking about being able to go back to the work force would be dreaming ~ for me.
OK, I'll give you Tom Selleck, but he's already in his 60's--sort of on the edge.
Like so many of you, I too gave everything I had to caring for my AD husband, and in the end, while I would do it again, it was not the best thing for me. I have medical problems that are under control, and maybe would have happened anyway, but the doc says the stess was a big factor, he's seen it before in women like me. I know it's easy to say, 'take care of yourself' and I know how all but impossible that is to do. Still, I'll say it. Don't neglect your mammograms, men don't neglect your prostate exams, get your regular check-ups.
After I placed my husband I realized how I'd neglected myself. One thing I did was to get artificial bright red nails done regularly. I'd look at them during the day and tell myself I was OK.
These ten years taking care of my husband with AD were made even worse 5 years ago when he was diagnosed and treated for prostate cancer, then the next year he was diagnosed with multiple myeloma (incurable cancer of plasma cells and bone marrow). He was given 2-5 years. At first, because the AD wasn't so bad, we made our bucket list. Since we are living on the edge financially, I figured we could charge everything and pay it off with his life insurance. We went snorkeling in Key West, we went snow shoeing in the Rockies, we spent a snowy Christmas in NYC, we spent some time on the Maine coast. Then after he no longer wanted to travel, I began to buy clothes for us, things for the house, etc. He loves nice clothes (doesn't everyone?). I wanted him to be proud of how we looked. And now it's completely out of control. He was recently diagnosed with a very malignant melanoma. We no longer need clothes or things for the house. We can no longer travel. Here we are near the worst part and I don't have a way to fill the hole.