Everybody talks about what we'll do "after" we get off this caregiver ride but that's just not good enough for me. Much has been written about the toll caregiving takes on the caregiver -- in my own family caregiving for my AD father killed my mother 2 years before he died. Although DH is 12 years older than me, I highly doubt I will have anything near 12 years left to live after his death -- it's highly likely I won't outlive him at all.
Perhaps I am more selfish than some, but I find that to keep my sanity I have to have a life NOW. I make time for friends, I seek out opportunities to get away from DH and even that is not enough. I am disgruntled, unhappy and resentful NOW and cannot abide the idea that I must do everything for him -- to he** with my wants and needs.
Some of us may well have another 10-20 years to take care of our spice. Is it okay with you to put your life on hold til AFTER?
The Caregiver Power Blog -http://www.thealzheimerspouse.com/Caregiverpower.htm - talked specifically about getting a life NOW while still caregiving. It is vitally important. I absolutely DO NOT recommend putting our lives on hold until AFTER. Neither do any of the social workers or psychologists to whom I have spoken. It's not healthy - emotionally, mentally, or physically. If we develop a life separate from caregiving, while still caregiving, it makes the AFTER transition easier.
Weejun, when I talk about AFTER, it is usually referring to travel, which I can't do much of now, except for business.
I work full time; I see my girl friends for lunch during the week and one every other Saturday; I participate in two caregiver groups (lead one); read and participate in GoodReads with Starling; and so I consider that I have my own life while taking care of my husband in the evenings and on the weekends. My grandson is a great daytime caregiver. We HAVE to maintain some time of our own at least weekly. I'm fortunate to be able to do it daily. I am not cut out for 24/7, and I LOVE my job. I also will need it so I can travel AFTER.
Continue with your start on a separate life and enlarge it. No guilt allowed!
You don't have to do everything he wants. You just have to make sure that he is safe and cared for, even if he doesn't like it. Having them happy keeps us happier though, so find good excuses to be away....<grin>
i think thats just it, the ones who are just starting the journey have a lot of time to make sure they continue to have an outside life and not get caught up in the humdrum of 24/7 caring. alot of us didnt have that insight early on and now many years have passed us by and we did make the mistake of not making sure we continued friendships and a life outside AD. i think what some of us refer to 'after' is like mary says because some of us are into stage 7 and it may not be that long for some of us now. the 'after' is looking 'closer' than before. i agree if you are in earlier stages planning on the til 'after' isnt a good plan. most of us who did it, wish we hadnt. i still would be the caregiver i am today but with more outside contacts and earlier respite times. divvi
divvi is right, but in my case, my DW was my whole life, and so now I find myself trying to do and be something like BEFORE I met her, but that's not feasible. How do you become in your early 20's again? So I'm trying to have an 'outside' life like I SHOULD have had while still living the happy married life. By that I mean other guy buddies, going to functions like a car or boat show with them, or bowling or sailing or playing poker. Did none of that before, just wanted to be with DW all the time (not shadowing).
If you combine what ((Divvi)) and ((Joe)) said, you have me in a nut shell. Lynn and I didn't socialize much, we were all the other needed. Oh we had friends, and we did go to Christmas parties and out to dinner with other couples from time to time. But for the most part, we were happy with it just being us.
Divvi is soooo right. I did not have this wonderful forum, nor the support with the doctors that I have now when I first started this journey. I am disabled, so I was home anyways, it just seemed natural that I would care for him at home. What I wish I had done, is what all of you are advocating, still care for him like I did, but with A LOT of help!! I had NONE, I did it all alone, and still would be, if it hadn't almost killed me.
I have been isolated, just an AD spouse, and me an overwrought caregiver. I lost all contacts, stopped going out with friends, I HAD to care for Lynn. What I didn't know, or couldn't see back then, was I could still care for him, AND have a life of my own.
I understand exactly what you are saying Divvi, and if I could, I would give my life to save his. Just as he would have for me before AD. But, he is gone... that Lynn. I did feel I had to wait until after, but just recently, with the help of all of you!! and my doctors, I am seeing how that is not a logic choice for me. I AM ALIVE NOW.... I need to live now! I have the time now, I just need to find the will and strength to try.....
I AM going on that cruise!!! So... It's a start :)
Nikki, of all the folks saying they are going on that cruise (and am very happy they are!)i am MOST thrilled that you are going to make it. being tied at the umbilical cord mentally and physically like we both have been is hard to break even in late stages. i know the cruise will do you a world of good mentally and spiritually to be among lots of these good friends. hats off to you for making it happen and not from just the monetary side:)))
i really considered going as well but have a family committment of my brothers 50'th anniversary that SAME last weekend of the cruise and cant go this time . but theres always a next time!
((Divvi)) Thank you my friend ((hugs)) We are so alike, I feel a bond with you and I do really wish you could come!!! tell your brother to have the party when you get back ;) I would dearly love to meet you!
divvi, you've got it. It all disappeared while I wasn't paying attention. I don't know how to get my own life started again. I have called for a caseworker visit, but if she doesn't have any ideas of how I can get some respite, what then?
There is only so much my online groups can do for me. Yes, I get to have intelligent "conversation" but I also need real faces and real voices (sound) some of the time.
Starling, are you near a library? Go look at all the postings there - they all have bulletin boards. Live discussion groups. Garden clubs. Etc. Google your town and Volunteers in Action. And find an agency that can provide a sitter/WALKER for your husband. You are so knowledgable and bright, I know you'll find something you can do..
For thirty five years we lived in this town and I barely knew anyone. My volunteer actions were limited to Monhegan. Eventually, when I retired, I got started at the zoo, and then with the environmental land trust group here in town. At this point I have too MUCH to do!!
I actually get to go to the library with my husband in tow. Haven't been there alone, not even for 20 minutes, for a couple of months.
...[sigh]...
They are great on kid's programs. They are almost useless for adult programs. And NOTHING!!! is in the daytime. Not much I'd want to go to at night either. I haven't driven at night for 10 years or more. Yes, the cataracts are now gone, but this is a near-rural area with no street lights on the main roads. We have them here in my development, but not on the roads leading to it.
I live in a 55+ community with a community center but there is very little going on there that I want to do either. Mostly they play cards and have couples parties. I don't enjoy cards and we are no longer a couple.
I've made a list of what I'd like to do if I can work out some respite. Did it today.
I need time to go to therapy. I need time to take care of my own health. I need time to meet with friends once a week and do something fun for myself. In many ways this is the hardest thing to arrange for because I no longer have friends. There are neighbors who will do things for me out of Christian charity, but friendship is something else.
I need time to shop for myself in situations where I can actually try something on. I need time to go somewhere and take a class in a dirty craft. The last one is what I thought I'd be doing as a retired person.
starling, i see a very great need for you to find the way to get some real time away to start working on these projects you listed. last time you said DH wasnt 'ready' for daycare, and as we ALL know we tend to find excuses that will work to keep us from having to force ourselves out of the caregiving modes even for just a few hrs/wk. this time if daycare is an option you are given please take it. your DH may not like it like many before him but he will adjust as do they all eventually. if you have some inhome respite time offered by the caseworker jump on it! get out of the house to break the isolation and then start slowly. you will be quite surprised how easy it is to find entertaining times alone and away from AD once its in motion:) before you also said 2/wk was too much for daycare but today i think its too little. or at least a good start. 2/days out for you will be heaven. if you have to take DH with you and start driving again! you will need that as an option 'after' anyway. getting back into driving anytime will offer up the freedoms you are seeking and needing. you are a very smart lady, i am sure this time around you will find a way. my best as always, divvi
Starling, If you have read my previous posts on our adventures with daycares, you know that it is not a PERFECT solution. But, weighing the pros and cons, it is absolutely a plus overall. How do we know when our spouses are ready for it? There's only one way to know, definitively, and that is to try it. Take a gamble, give it a try--as Divvi said--2 days a week. You will be pleasantly surprised.
Jeanette.. maybe pottery? gardening? painting? Starling, I was thinking of other groups posting at the library, not stuff the library has itself. And bulletin boards at the community center. I'm really worried about you, my friend. You sound a LOT more down than you usually do. I know you like scrapbooking.. are there no groups who meet to scrapbook or show off their work? I'm for having a CNA come in over daycare in my location, but get one or the other!! And get a little chemical cocktail started..
Dirty crafts are crafts that make messes. Ceramics, oil painting even watercolors. Even beading can make a mess. I did digital scrapbooking which wasn't messy. Did regular paper scrapbooking first, but really prefer the digital kind. Yet another thing I seem to have given up.
He doesn't need a chemical cocktail. There was a time when I should have gotten him something for depression, but he really doesn't need it now. I am open to it.
Yes, I sound frustrated. More frustrated than anyone here has seen me be, but most of the time I'm doing OK. What I really want is some therapy. I don't think a drug is really necessary right now. And the frustration is feeding the proactivity at getting a caseworker back in here (I have a Thursday AM appointment) and then following up on her suggestions.
I really think I want someone in-house. I'll do day care if I have to, but it might be harder than in-house. And this time round I'm going to control the guilt stuff.
Weejun, might I have read between the lines of your post that opened this discussion and concluded that maybe you're missing a personal relationship rather than just the busy stuff that everyone has been suggesting?
Weejun – You are absolutely right that "after" is not enough. Actually, I find it hard to remember now why I thought it would be!
Nikki, "I AM ALIVE NOW.... I need to live now!". AMEN to that. I may write that on a big piece of paper and hang it over my desk. I used to think about "later" being my own time to live, but now, as my own health problems multiply, I realize more and more that none of us are promised a "later".
This is so hard. It's like I'm fighting survivor's guilt. My husband is dying, but I am not—yet. But I feel guilty for wanting to get out and live my life. That's terrible, to feel guilty that I want a life of my own. But I don't just want it--I desperately, desperately need it.
Almost all of us are in, at best, emotionally abusive relationships. I don't mean that our spouses are abusing us. The relationship itself, being a caregiver for someone we love, is abusing us emotionally. There is not a day that goes by that I don't remember that my husband has a terminal disease. If living with that isn't emotionally abusive (or destructive), I'd like to know what the correct description is. If we feel like we need to escape from that every once in a while, I think that's a sign that we're trying to have good mental and physical health. And most of us will use some of that good mental and physical health to keep doing what we are doing. To quote Tiny Tim, "God bless us every one!".
I feel the same way. There is no way I would ever put myself in the situation of having to take care of anyone else. I have evolved into a very happy ex-caregiver who loves being on my own.
But, I hope that all of you who are looking for companionship and maybe more, find that special someone and live happily ever after.
I agree with you, Weejun, Jeanette, Sandi. But I've felt this way for many years, not just since AZ came along.
I have resisted every plea to say how dealing with dementia has enriched my life, enhanced my self-esteem by knowing that I'm providing care for someone else, etc. It's the pits. I'd far rather not be dealing with it.
BUT it does seem to me that one thing it is doing, to all of us, whatever stage we're dealing with, is making us re-examine OURSELVES, identify who WE are, and how we'd like to be. I can't tell you how many women I have encountered over the years who say "NOW I know what I want to be when I grow up.." and these are women in their fifties or sixties, and not at all only those dealing with dementia. When we were kids many of us probably said "I want to be a mommie" and left it at that. We didn't consider that we HAD to define our future better than that and though many of us did have strong interests in some field we were often willing to postpone pursuing them. Indeed I guess we were lucky as women to have the time to consider what we wanted - very few men were "allowed" by society to get away with saying, "I want to be a DADDY!"
Now here we are and we are looking at a future which we may or may not survive to enjoy. Maybe it's simply a diversion, but identifying things we'd like to do when we ARE on our own may start us preparing for it. The journey, not the end, becomes a goal in itself. Does this make sense? It's hard to put into words.
My problem all my life has been that I'm too interested in too many things! For years, the mommy years, I thought I'd be a schoolteacher, not because I particularly liked kids but because I'd have a schedule that coincided with that of the three kids. Got a master's in reading ed. Then I spent one year getting three kids up in the morning, getting myself ready, going to school and dealing with LOTS of kids all day, picking up three kids, doing the dinner thing, preparing lesson plans for the next day, putting three kids to bed.. and I said WHAT WAS I THINKING!!
So I thought I'd be a travel agent since I've always wanted to travel. A brief stint with that taught me that travel agenting is not the same as TRAVELLING.
So I got a job at Brown University and there learned that I had an affinity with computers. Spent twenty years developing work processes that could be used in administering the academic deanery, learning how to do what was then quaintly called "desktop publishing", learning to program, automating offices, and teaching what I'd learned to adults in academic settings. I loved it! Still do. So even when I retired at 62, 11 years ago, I continued with the computer "stuff" and am still constantly using my skills to work through processes in the non-profit groups I'm associated with. And still studying new ways of doing things so I can apply them there.
Meanwhile, my love of travel hasn't abated.. and anticipating the cruise has got me more excited than I've been in months! But no, Jeannette, I still don't know what I want to be when I grow up!
What I want to be when I grow up is LEFT ALONE for a while to take care of myself and not have to make sure DH has taken his pills or listen to a long story at the end of which I have no idea what he is talking about!
I agree with you briegull - I still don't know what I want to be when I grow up. I love my job (programmer) but there is still so much more out there to do and explore. I have so many interests that I could do lots of things and enjoy many of them.
What I want to do after is live my life. If a person comes along that would be a good companion that will be fine but if not, that is okay too. I like sharing my life with a partner. If I do find one, hopefully he will be around and in good health for the next 20 years or more so we have plenty of time to travel and do things together.
I find it hard to believe that you sweet and caring ladies would not fall for some charming and kind guy to pair up with if you both had that 'chemistry'. C'mon now, fess up.
Would I like friends to go to the movies with or have dinner with? Sure. But I'd be just as happy with women friends as men friends. And I'd be just as likely to have purely platonic male friends because I did that at jobs most of my working life. I tended to have jobs where I was either the only woman or one of very few women.
It amazed me as a young girl that I actually got engaged at all 49 years ago. I'm really not the type of woman, or young girl back then, that guys liked in a romantic way. Even if I was looking for it, it wouldn't happen. Also, I've seen what it looks like when a woman my age is looking for that romantic connection. And common sense tells you that is looking for a world of hurt. Why would I do that?
T.J., I'll 'fess up. I love being with a man, one who really cares. I'll never say "never". First marriage didn't work out - but still friends; second marriage was/is wonderful - well, AD took a lot of it away - but not totally - yet. Guess I'll keep my options open.
TJ, I might feel different if DH had been different. Being in the military he was TDY quite often so everything was left up to me. When he retired it stayed that way. There is no way I would want another man to clean after, cook, do laundry, take care of of household problems, financial and anything else that came up. I know I would still do those things but a lot of them would be for me and not US. Plus I would cook when and if I wanted!
I think the bottom line is that we have to put our efforts into staying /getting connected to the "normal" world we'll be rejoining in our AFTER, and realizing our AFTER will only be as good as we make it. The Future is and has always been "potential", nothing written in stone. Our experiences as caregivers, I think change us into much more independent, stronger persons in many ways, and that will influence our decisions and choices. The new people in our lives in our AFTERs will be responding to the newer us. I hope to have an AFTER that includes someone special, but that person will not be my 24/7/365 caregiver, nor would I be his should the situation arise. Helping each other yes, but not the full load. Personal care I will have and I have no intention of being a slave to housekeeping chores. My time is too valuable to waste on dishes, laundry and the like.
I was thinking never again and then I remembered a special someone from my past. Now, I really don't know what I would do if he appeared at my front door. Not likely to happen as that was 60 years ago. But life leads us down strange paths.
As I contemplate what life will be like "AFTER" I think of the father of a very close friend. After his wife died he found a much younger woman who liked to travel as much as he did. The 2 of them went on lots of trips together all over the world, but nothing else came from it. Between trips they each went their separate ways. That sounds good to me, and I have in mind the woman I might do that with.