I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. Do you feel the same as I do, or do you have a different take on the situation? Please post your comments here.
Yes, I do think about AFTER. I even write the word "after" in a special way. I have even started thinking about where I will live AFTER.
I'm also looking into ways to make TODAY better. I'm fully aware that if I don't work on making my current life somewhat fulfilling, the AFTER will be much harder than it needs to be.
But there are so many things that I can't do now. I can only do them AFTER. So yes, as far as those things go, I'm in Limbo.
In the middle of it all, one day my daughter said to me, "Mom, you live in limbo." I had simply drifted into living that way, I'd done all that I could do. But sometimes I'd mentally reach out to my future with a longing to be settled.
Definitely in limbo. A great blog, Joan. And I'm in limbo since I can't PLAN for anything. Have to deal with it as it comes, whenever it comes. Not a wonderful way to live. Not what we had planned. But if it's this way for me - how absolutely horrific it must be for DH.
you are right on the money, Joan. I feel like I can't make any plans. I can't even make a hair appt, because I don't know if i'll have to cancel it. Limbo, that's where I am.
During our weekly swim a couple of my (younger) friends were talking about the way their life goals were changing as they grow older. My best friend -- who knows very well what I am going through -- just looked at me knowingly. And then explained to the others: MY life goal right now is just getting through the day, the week, the month, as pleasantly and constructively as possible, trying to make the right decisions in the light of what things are like right now, but knowing (as you on this site have taught me) that they are bound to change, although I never know when or how. Limbo indeed, Joan. That's exactly what it feels like.
That was great Joan. A PERFECT word to describe our lives. I can't wait until AFTER either... which makes me feel selfish, but. I am only 44!! I want a life back!!
Limbo is a perfect word for what we are going through. The only things I plan are dr's appts. Everything else - hair appts., grocery shopping, etc. is taken day by day. And, oh, how I wish I could have a whole day to go out to lunch and see a movie!
I am 79 and DH is 81; he is in pretty good health except for Alzheimers. We are now in a retirement home, but in our previous neighborhood 3 of the 4 caregivers died before the patient. He wants me by his side 24 hours a day. But I am going to look into getting an aide, or whatever, so I can get out.
I now realize his early changes started in the mid 90's. It has been a long time.
It could have been my daughter saying it instead of instead of Bettyhere*s. I am in limbo. I'm coming up on a year since Claude's passing (2/26). Except for going to therapy on my back once a week and stopping at the Library to pick up a week's worth of reading, I get up, read the paper, take care of the house and laundry, and then either get on the computer or read.
I did start my history class on Monday (twice a week) which I think I am going to really enjoy, but I'm the oldest one there - most are 18-19 and even the instructor is younger than my youngest!!
I had planned on doing some volunteering and getting back in touch with friends, but our "so called" friends moved on when Claude ran them off with his behavior during his worst.
I'm not depressed and am on anti-depressant, but I just don't have any energy. When I came back from my two week visit to my sister last July, I was gung-ho to start working on getting my life back, but here i sit in "limbo-land".
Mary it is hard to make all the decisions and make everything happen when you are alone. Do you ever wonder if what you do makes any difference to anyone else. It is so difficult to make a life style change at our age.
redbud73086*...............I live alone now, I am depressed as well and on antidepressants. Sometimes, you know, the medications keep us on an even keel, but the other side of the effects can be low energy. A feeling that you just don't want to do anything but crawl into your nest and stay there, and just do the necessary things for life. Dont want to change a thing, even though you know you need to do something more for yourself to remain whole. I have been able to recognize this in myself, most especially lately. AS HARD AS IT IS, I have lately been able to organize outings in the evening with a girlfriend, out to eat and a movie, a show in town, whatever. I'll even go out alone. THIS IS HARD because I had developed a habit of going to bed when it gets dark!!! No motivation! I shoveled myself together last week, PUSHED myself out the door, and went to the arts council downtown with my portfolio in hand and the suggestion that I am available to teach in my medium. I used to be so physically fit, with defined musculature, looked years younger than I am. Strong and able on my own. With the accident I experienced in August, all the "down time" and recovery from that (which STILL isn't finished) as well as having to deal with Johns health issues, legal issues, family issues, I feel like my bod has taken a beating as well as my ego, stamina, interest in life. I bought an exercise gym some time ago when I brought John home, thinking I could get him moving safely. Now, its mine alone and I'm GOING to use it. THAT is my latest battle with myself. It's hard to get motivated to do it here all alone...and when I'm still in so much physical pain. But, I have a plan. I want to place my exercise bike and "total gym" facing my computer monitor and put on some NetFlix movies while I work out. I could even put on some of the exercise videos that came with the equipment and work out with the pros! Hardest for me is reestablishing friendships I had, making new ones. But, you have to take steps. Even small ones. How about after you've gone to the library for your week's worth of reading material (I'm a reader, too), go find a quaint coffee shop or tea shop, even a seat at the local mall and read. It might work. Just a suggestion of mine.
Yes, this thread really hits home. I barely have time to post here but this weekend, just one day really (today), I have respite. Brother in-law took DH to visit some cousins out of town. Well, I am still in my bathrobe and reading this website at 10:30 on a Saturday morning. The impetus is just to cocoon and enjoy the empty space. If this is what I do on my big day, what will I do AFTER? I'm too "verklempt" right now with job, DH, house, finances, kids, mom with ALZ to formulate a thought about AFTER. I think I will just plan on walking the dog in the brief burst of sun that we have had here in Western New York. Yeah, now there's a PLAN! Thank you all for sharing your thoughts. All of you and Joan's amazing blogs are very comforting and educational.
Sorry, now I'm on a roll about AFTER. There are many AFTERS! My youngest son is preparing for college in the Fall and I am dreading living in this house AFTER with DH. OK, now I've said it. This is not the first child I've sent off into the world but this time the AFTER is pretty bleak, being alone with DH. It's one thing to run a household with some life left in it, a happy teenage son with a band and friends to brighten things up. It's quite another thing to run the household with just a very wooden DH. Sorry. With my older two kids, the empty nest also represented a hope for a new phase in the adult relationship. You all know what I mean. Growing older and growing closer and making plans and feeling proud of having reared some nice young adults. An empty nest and a new beginning. Now, the empty nest looms large. There will be no interesting conversation or making new plans or friends. I will come home every day after work to a strangely quiet house and husband. While my son is here, I transition from work to home knowing that I need to provide a happy and normal environment. I fear that I will not be good at taking care of DH alone. I read about many of you doing it so well. Not so sure I'll handle as well as so many of you do. Sorry, getting a bit weepy now. I WILL go take the dog for a walk in the sun, then tackle the mountain of paperwork sitting in my dining room table. Thanks for providing a venting space.
Isa-it's not about handling as well as others. It's about you and your comfort level. It's you who are the most important person in the equation. Yes the house is too quiet and the "after" won't be as you had hoped. Give yourself an atta girl. You are here with us and doing your best.
Isa, don't feel bad about spending your day of respite just relaxing. Sometimes that's what we need most. Since dh has been going to day care, I haven't really done much constructive with my "free" days. But they feel so good, and I am happy just doing whatever I feel like: sometimes just reading. There are things I feel I ought to be doing but I'm trying not to feel guilty about just enjoying the vacation from caregiving.
Isa, I thought our retirement years would be different as well. There was so much we planned on doing together. But, less than 2 yrs. after retirement he had heart surgery. That heart surgery revealed this demon we call dementia. He had hallucinations while in intensive care. Everyone tried to assure my family and I that this was perfectly normal. Patients who spend as many days as he did in a large, brightly lit room with several other pts. as well as nurses and doctors find this overwhelming, they said. But, those hallucinations came back a year later and he was diagnosed with Lewy body dementia. We think this was accelerated by the surgery. When I received the diagnosis a little more than a year ago I think I took it well. But, as the days and weeks went by, not so good. I felt overwhelmed and very scared. But, with time there has been acceptance and I find myself much more patient with him than I used to be. That is not to say that I don't feel extremely hurt sometimes when he says things that are painful. There are nights and days when that overwhelming feeling of loss comes and then come the sobs. So, maybe, you might come to that acceptance. bluedaze is right when she says YOU are the most important person. We must take care of ourselves and not be afraid to get the help we need. My husband seems to be on an even plateau right now. I don't know how long it'll last. But, the trick is, as they say, to take one day at a time and make the most of the good days.
JeannetteB, Bluedaze and Bev, Thank you for your comments. I learn so much here about others and there is so much to know about our roles and how they change us. I try to remember to keep a somewhat active social life so there will be some support now and AFTER but it is hard, as you know. We are not really a normal couple and so most of my social life is with the girls and that's OK with me. So, I forge on toward accepting this situation and for the most part it's workable. Frustrated by a lack of future. Just part of the whole package, I guess. The saying "The future is NOW" just popped into my mind. Hmmm.......