I remember a time when I looked forward to each new day, but that memory is dimming.

Now, I dread going to sleep which has developed into insomnia over the past few years since DX because I dread waking to a new day of the same only worse. When we know things are not going to get better. When we know things will continue to get progressively worse and worse. When we know we're barely hanging in at the stage we're at but a worse stage is coming up........what keeps us going?

I have in the recent past come up with personal solutions to this by planning quarterly visits to my now 2 year old grandson out of state. Or more recently latched onto a fantasy of renting a small rv and traveling the country a la "The Leisure Seeker book." But due to DH's decline neither of those is now an option. But since he's still somewhere around or between 4 & 5 this journey could continue for a long time.

I've become the kind of person I never wanted to be around as I'm sure I frequently come across as the downer that I feel. But rather than continue to whine about my situation, I'd just like to ask the question:

What keeps you going for the long haul? So many speak of "AFTER" but I'm looking to get through "NOW."

Terry, sometimes I ask myself the same question. My husband is in stage 7 and in a facility. There isn't a whole lot left of him and to be honest I am tired. I work full time and see him 4-6 days a week in addition to handling all the the details of a household (house, 2 dogs and six cats).

What keeps me going, the love I had for him when he was normal, the memories of the things we shared knowing that even if I knew where we would end up I think the price is worth the wonderful relationship that we had. Throw in a lot of stubborness and a very strong sense of duty and doing what is right and there you have it.

I have also followed the advice of a very good friend given to me early on - do something for yourself each week. It could be read a book, get a manicure, get a pedicure, go shoping by yourself, have lunch with a friend, go to a movie with a friend, whatever. I have given up a lot of the things I love to do (silk ribbon embroidery, sewing, a good portion of my reading, taking time to be creative, practicing the piano or guitar, going out with other couples and doing couple type tings, etc.) but doing even a little bit for myself each week helps me get through.

In addition to that, I have a very quirky sense of humor and can see some of the humor in spite of being in a horrible situation. In my mind I can also hear his commentary of some of the things happening to him and around him.

One of the things that I only partially gave up was exercise. I am not doing any of the machines right now but I do walk the dogs almost daily. That bit of exercise makes all the difference in my emotional stability. Of course, the dogs and cats antics almost always bring a smile or laugh. Have you watched six cats on fresh catnip? or watched a very enthusiastic golden retirever run after a tennis ball and steal it from her sister? This morning the other dog (1/2 golden, 1/2 yellow lab) was laying on the patio with one of my cats sitting next to her. They were surveying their kingdom together - wish I had a camera handy for that Kodak moment.

One last thing - I have always been able to appreciate the beauty around me (flowers, clouds in the sky, color combinations of flowers, shapes and textures) so sometimes, taking a few seconds to appreciate the beauty around me can also make all the difference.

I get out of bed for three reasons: bathroom, back hurting from laying in bed too long, and hungry!

For me it is not too bad except my life is so boring. We get up, sit around all day, go to bed. But I usually am up until midnight or later, then lay in bed watching TV until 1 or 2. I too have trouble going to sleep - I just don't want to. Probably because in the morning it is another boring day. When we owned homes I had nice flowerbeds and grew veggies during the summer. When we moved into our MH and parked at my sister's I took care of her flowerbeds and did the veggie gardens. Twice we had them looking great, left for workamp jobs and when we came back no one had done anything to keep them looking good. The first time her son and his wife were here and said they would but then they bolted on her (she was caring for her hb after his stroke). the second time my son and his wife were here. She said she would keep them up - no. Now I can't get the desire. I look at them, they are full of grass and weeds and think 'why should I, no one cares how they look?' My sister, who use to love to garden too doesn't care so why should I afterall it is her place? So I just sit in the MH on my computer watching TV =the same repeat shows and getting fatter. HB likes the shows too even though he has seen them numerous times also.

We are looking to take off in the next couple days -whether the workamper job we took or just get away. I am waiting to see what the neuro says today..

mimi - I agree, I too resent the life we no longer have. We had such plans to travel and work which is the reason we are living in a motorhome. I think of finding a job just for me and he can sit in the MH while I work, then I feel guilty cause he will be sitting by himself while I do what he wants to do. there are many that do it - the wife works while the husband can't, but I start feeling guilty. Catch 22! all our marriage I have put his needs ahead of mine - we do what he wanted, not what I wanted; we move cause he found a 'better' job even though it was hard on the kids to keep moving; I am sure many of you know. I am fighting just resigning that I will never have my dreams.

I don't regret taking care of DH. At least I don't think I do. I did for the year he was drinking so much and getting violent and actually hit me a couple times. Then I resented it big time. But now he's pretty nice. I feel guilty that my depression keeps me from being as upbeat as he often is.

I did get up and out and got his prescriptions and picked up his dinner as I don't feel like cooking and got him a few things he especially likes. Even put on a David Sedaris CD which usually makes me laugh. But at the store I felt I was lifting weights just moving one foot in front of the other. So much effort. I'm back on the bed. At least I'm not IN the bed.

I did think a lot while running errands and decided that this kind of depression I'm feeling today is no less real than the back pain I get when I've overextended myself lifting. When I have back pain if it's not too severe I can do some stretches and try to work it out and get through it. But when it's extreme the pain can be so excruciating that I can't move and I'm flat on my back. Sometimes the emotional pain isn't so bad that I can't try to laugh it off or work it off or redirect myself, but sometimes like this morning it lays me out. Frankly I'd rather have the physical pain than this. But I think many of us must have periods of extreme emotional pain. Given my history with depression and never really getting anything that works to eliminate it I've decided to give myself credit for accomplishing anything at all and just crawl back in bed and hope tomorow is better.

Charlotte, I used to hyper focus on all the things we had planned that are never to be and the life I left behind. Over time I think I just started shutting off that whole part of myself - what I describe as feeling like Post Traumatic Stress or being shell shocked. However, that said, I do still find myself hyper focusing on the disappointment and all the particulars of my interactions with family since the DX who live close by. So I guess I'm still feeling a lot of resentment. Maybe someday I can get numb to that too as those thoughts torment me when I try to sleep or concentrate on other things.

I know what you mean about the weight thing. I gained 50 pounds after DX over just a couple years. The other day a woman who was helping stain the deck complimented me saying I looked nice. I just stared at her. She repeated it. Really you do, she said. I did have on a new BIG TOP as I've gone from size 8 to size 16. I found myself unable to accept the compliment because I don't feel this is me but I didn't say that as it really hit me. THIS IS ME and since I've been heavy since we moved here all people here know is the fat me. I know I could lose the weight if I cared to, but I can't get myself to care enough to get back to the old me. I

This is a link to sort of on point to how I've been feeling:

http://www.npr.org/templates/story/story.php?storyId=4660757&ps=rs

I think I'll start another thread to mention the Tom DeBaggio story. Joan has a link on the main page but haven't seen it mentioned on the blogs. The link above though is a very short segment (you can listen or read transript) by his wife. I've been following their story since DH's diagnosis. I've always relatged to her and her depression and situation but will let you all listen if you haven't already heard it.

I guess for me it is as others have said. I don't really have a choice. But also, I do it for the love I still have for him and for all the wonderful memories that he has given me. One day at a time.

TERRY, I hear ya. I have put a few lubs on too and some of it I can lay at the door step of HRT which I did not want to take and quit butt hat was after 20 lubs found me..Since then, say the last 5 years, a few more found me but at least I am stable. I hate how I look and do dream about getting back to the old me..I keep trying to figure out how to go back to my WW menus and "just do it" but it is not easy. And like others have said, if it were just selecting things and then getting DH interested.
I hate cooking, but have to have something good for him..just that he liked so many things and now figuring out what he might like and not having so must wasted foods is a challenge. I have often thought about Nutrasystem!!
Tonight is left overs.

I find myself feeling like, I resent this. She recently has become more difficult. She needs help with just about everything. I do not like the digs. Her mom was the most self centered person I've ever seen. She did not even go to her husbands funeral she was too upset worring about what will happen to her. I see this same trait comming out in DW
We go to a store now and she will walk up to strangers asking where something is she wants. She will not follow me in the store I have to watch her all the time. She has just started fighting me on when to take her meds and what she will take. It just seems that we are disagreeing more and more. Does she not understand that I am the only person in the whole world that gives a damn about her, yet she will make things difficult rather than easy on me. I told her that I had a limit to what I can take and after that her options do not look good.

No, reasoning will not help. I don't think that threats help either and I would not dare be so cruel to someone who is so lost and bewildered. FIrmness does help, and gives the LO something to lean on.

The definance is often fired by anxiety -- meds can help to control it. There we go again. It's been said here many times and is one of the most important things I have learned from this site. The Risperdal has been very effective in our case. DH is calmer and happier, and not at all groggy or sleepy in the daytime.

Mostly I keep going because there are always three more things that need to be done. I've got more free time this summer, but not enough to do much for me, plus I'm being kept inside by the heat. So the question of why do I do it is more in my mind. I used to say that I'm stuck caring for my husband because there is no one else to do it--if his parents were alive and healthy we might be doing things differently. But I think it is dangerous to feel stuck. I could put him in assisted living. But it doesn't seem like the humane thing to do, and I want to set a better example for my children (there is a lot of Alzheimers in my family so it may hit me in 25 years). Actually I want to find the right community for myself some day, but my husband so much doesn't want that that he at one point said that when he had to go into an institution he would know it was time to kill himself (I think I talked him out of that one on the grounds of how it would make me and our kids feel).

I shouldn't complain so much, he still can mostly take day to day care of himself. But he wants me to tell him what to eat for lunch and to include him in things and he resists every suggestion I make and complains I'm acting distant. I'm tired of it. We never had a very deep marriage and his most annoying characteristics are getting worse (he has had attention deficit disorder as long as I have known him). Why do I have to take care of this person I don't like? I had come to terms with the idea that this is the task I have been and I will do my best with it, but I'm back feeling trapped again.

Back to the topic. I think guilt. I know I would feel guilty if I did not do my best by her. We have been married 21 yrs and she put up with alot of crap from my kids, not hers when we first got married and she stood by me. I would feel very guilty if I am unable to see this task thru. I have the hope of when we get back from vacation in August that I will finally get some in home care 3 times a week. I only have to make it 30 more days.

Bama--I agree. Going one step further--also the cards I elected to pick up. A matter of commitment.
At the same time, I will do my best for DH for as long as necessary, but not in a way that is to my detriment. If his condition deteriorates to a point where he needs to be placed, I will advocate for him, not fight to keep him here and kill myself trying to do all he requires at that point.

Marilyn, you're right. Sometimes the depression becomes unbearable and other times I can function pretty well. Today as I had hoped was so so much better. We took a drive to preview a house for someone else in a nearby town, then drove in the country, stopped by a lake, had lunch, and really when I think how low I was yesterday I would have to say it felt like a day made in heaven. I just wish in the darkest times I could grasp hold of these kinds of days but they seem beyond my imagination then. Oh yes, thanks for asking, but I think I'm an A student at trying to get on top of the depression. I've written about it many times here and after hearing Tom Debaggio's wife in the NPR series describe her inability to ever find a solution to her severe depression over their 10 year journey I fear I may not either. I will though continue to try as days like today are worth fighting for.

Thanks Marilyn. I hope everyone listens to the DeBaggio's interviews. I think they tell more about AD than reading a dozen books. And just listening to his voice I can hear my DH in there. There's a tone or cadence or something about AD patients I feel I can often recognize. Thank god I've always had a sense of humor which sometimes feels like hysteria though. <g>

You mention the worst thing that could happen to a person with depression would be dementia, but then I added in moving half way across the country and remodeled one house to sell and then bought another one here and took it down to the studs for a total renovation. One might say depression is just the tip of my INSANITY!

So, today a friend is hauling me out of here to a nearby town for lunch. Does not sound like fun to me at the moment but I'm just going to force myself out the door and hope I can keep the darkness at bay for awhile more. Haven't found good support groups here but do have 3 friends in this area and it is a community which would be easy to make friends in if only I could get myself to put myself out there but I just don't have it in me. These 3 are keeping me keepin on and I'm thankful. AND FOR THIS PLACE.

Terry, I think just what you are doing is just what you need to do, fantasize. Get out when you can. As hard as caregiving is, I think widowhood, is harder. Try to appreciate that you still have him, know that this won't last forever, and if you get that RV, come get me!
Arms around, Susan

Yes, Rae, and the 2 year old is capable of learning. I was not a patient mother and maybe God wants me to learn how to be patient. I found myself in agreement with the CEO of BP when he said he wanted his life back and nothing grieves me more than what is happening on the gulf coast.

Rae Ann, others can address this better than I but I just keep remembering something I think Joan said that statistics show that caregivers usually place their loved ones a year later than they should have. I have the same fears you do about NHs and thank god DH isn't ready for one yet, but I'm sure some people here can tell you that there are some good ones. And I know they'll tell you you have to take care of yourself first. He wouldn't want you to go down with him. I fear I won't place DH when I can't go on anymore though so I feel your frustrations.

By the way, JeanetteB, I love the suggestion you made to your son when he asked how he can help you and you said you would like to see him and your grandkids every few weeks. I'm going to suggest that to my children. Because, especially during the school year, weeks and weeks can go by when we don't see the children and when we do see them, both of us seem happier afterwards. A very good suggestion. Thank you.

Imohr, you give me hope. We have also been married 54 years but I was 28 and he was 33 when we married. I hope I can keep him home but there are days that I don't think I can continue. You were so lucky to have family near by to help. Yes the wall does go up bit by bit .

FATH........................................