I went to lunch today with a group of women, all of whom were laughing and talking and having such a good time and I just didn't fit in this time. How can I put my caregiver role into a separate place and rejoin the human race? I've always been a talker and very outgoing, but I just wasn't able to join in very much. Have I really become that boring?
PrisR very good question. First of all-the other women probably don't want to hear of your day to day misery. Think you already know that. You almost have to go with a prepared script-even if it's the price of strawberries. I think we do lose some of ourselves along the way. You're still in there=just might need more practice in joining the real world.
NO, you are not boring...But our lives are such that they do not lend themselves to anything especially interesting. Picture this...a group sitting at a lovely outdoor cafe under a brolly having coffee and biscotti...one starts up with We are going to Tahahti for my birthday..hubby is taking me there. Neither of us has ever been...The next one comes up with That sounds so great...we are going to Yellowstone to get away from the heat..the third one says, well we are going to buy a boat and go out on Lake Minihaha...and when if comes to us...well we can say..I was so lucky the other day when I finally found a waterproof mattress pad and some depends that really stay on Dh'..and the doctor put him on XYZ so that he is not so anxious now..life is more peaceful... The problem is these nice people cannot relate..we get the perfunctory..oh that is so sad...and a sympathetic look and they move on...such is our world unless we are among our own kind.
And this may sound mean but I don't want to hear about the upcoming trips or new boats...maybe that is small of me but when I have nothing but the sameness of every day and conversation that is strained because it really isn't there anymore. I am happy for them that their worlds are going well..I don't begrudge them but I don't want to hear the unending prattle when live is so serious with so little comprehension by others who really don't put themselves out to understand what AD is.
I think we reach a point where we expect the world to grieve with us for what we have lost. Not gonna happen. Other folks having fun will not cause our LOs to decline. I still think AD jokes are funny. The rest of the world is the norm and we in our lonliness are the odd ones out.
There will be a time again when we have subjects, ideas, and information that we can share with others, but for now, we are in Dementia Land; this is our life; and we need to be surrounded by people who understand us. It's not forever, it is now.
We moved to Florida right in the middle of the diagnosis, and had no friends down here. We tried to make friends with "regular" people. It didn't work. They didn't understand our issues, and it was awkward trying to make conversation with the "elephant in the room - AD", so we made AD friends. You have probably seen this - don't know who the author is - but this is how I view my life as it is:
"We can have friends for a reason, friends for a season, and friends for a lifetime.
I used to think that only lifetime friends were valuable. That the reason and season friends were not true friends. But now I think that God sends us all three kinds of friends, and that they are all equally valuable, and can all make lasting impressions on our lives.
When dementia of any kind enters our lives, we sometimes lose friends that we thought would be lifetime friends, or at least they drift away and aren't as connected. Then we may need to look around and find friends that may enter our lives only for a specific reason, or might be friends for just a season. I have new friends that I have very little in common with, except for dealing with dementia. There is a good chance that after we have dealt with dementia to the end, our friendship will end, because we will no longer have a common bond. That is ok. We were there for each other when we needed it the most. We may find friends that enter our lives for a specific reason - a piece of extraordinary advice, a referral to a valuable resource, companionship for a certain period of time. They may come into and go from our lives quickly, but their importance in our lives cannot be discounted."
Joan, you're so right. I've often held onto lifetime friends when our time together was really over. Lives take different directions and attitudes change, as do experiences. During my 20 years in Florida I've discovered that most friendships have a shelf life of about 3 years. It's sort of as if your work together is finished. That doesn't mean the friendships weren't meaningful, they were. As for today, one woman lost her DH to AD about 4 yrs. ago, after several yrs. in a facility for AD. Another woman's DH has vascular dementia and is going downhill, another actually has some form of dementia herself. And no, none of that was the subject of conversation. Another woman, the leader sort of, lost her husband in a sudden tragic accident 2 yrs. ago. She manages a full, happy life. My main interest has been world travel and I could go on and on about that all day. I guess I'm in a funk now that the travel has stopped.
Joan--I think that you and Sid are very fortunate to have found your "dementia friends". I have been attempting to do the same since dx 5 years ago, but due to our ages, (61 and 65 at this point) have been unsuccessful. We were in a very small support group--4 couples--all of which were 10 years older than we. Two of the people w/dementia have already progressed to the point of being placed. The third couple hasn't been and isn't now the type that socialize. There are new early stage support groups, but now that my husband is in the middle stage, I don't know that there would be bonding between him and the other people with dementia.
Mimi, it is funny, when my husband was first diagnosed 5 years ago, I had many a conversation that resembled the one you described in the outdoor cafe. Guess what--then the economic downturn happened and many of the trips to Tahiti and boat buying had to be curtailed. People started moaning and groaning about how much they had lost in the stock market instead! So in a way, that somewhat leveled the playing field. Now that the economy is turning around, I am hearing more about trips, etc., but I don't think it will ever go back to the way it was before.
Bluedaze--I understand what you're saying, but I also think there should be some sensitivity to our situation from close friends. For example, if one had a friend who had just filed for bankruptcy, for example, wouldn't it be tacky for others to discuss spending money on luxuries in front of the friend? Maybe I just expect too much from people.
PrisR - that is why I am in such turmoil whether to go to my high school reunion next weekend. My life revolves around my hb, AD and my sister who had a stroke and now has short term memory problems. I don't work but we do live in our MH full-time and are traveling now while he can, but I really do not anticipate much to say. I have met with one girlfriend from school and our lives have taken such different roads, we have nothing in common. I connected up with a couple others on Facebook but our world's are so different we have nothing in common. I have this vision of what always goes on at gatherings - me sitting/standing listening to others with nothing to add but a curt comment now and then.
PrisR, I know how you feel. I've been there for over three and a half years. My husband is in the last stage and I'm exhausted, tired, and if asked how he is, I choose to say "He's not doing well" and let it pass....to go through the details would have me in tears. As you say, MOST of our days and our thoughts and our hearts are buried in AD....
That said - I REFUSE to let it be 100% of my life. I can go to lunch with my friends...where I can talk about my kids and grandkids, and great-grandkids, and listen to their stories. I can go to my professional organizations' meetings and conferences and get my mind on something besides AD. I took a while to do so, but it is GREAT respite for our minds. I don't have a lot of friends that I know face to face outside my support group who have AD.
Our best friends for over 40 years just got back from spending a month in Europe....And sent me the link to over 400 photos....and I felt like I had been there with them. Did I wish we had been able to go? ABSOLUTELY! Did I resent the fact that we couldn't? No. I know that there will be other trips and other tours and more things that will come to me AFTER, and I'm holding on to that hope with both hands!
Me boring? Not on your life!!! Could I be? ABSOLUTELY!!! <grin> But you see, I've labeled AD the enemy, and I won't give up - I won't let it take both of us! I can talk about the oil spill and the financial crisis if need be, and places I want to visit with the best of them.....So can any of you!!!!!
Imagine a switch in your brain that you can turn on when you go out with others. That switch prevents you from thinking about your spouse or AD. It a kind of respite.......maybe for an hour or two......and it takes time to make it work successfully. I didn't achieve it overnight.....I discovered it at a very low point in my emotional state....You will too.....
Mary--I admire your attitude and will try to emulate it! However, I do think it is easy for those of us who don't have a paying job to let caregiving overtake everything else in our lives. It seems to me that working would automatically force one to focus on something else for part of the time, which is a good thing.
Thanks for the wake-up calls. I knew that when I posted I'd get good replies. You all empower me to do the right things. I can't change my feelings and fears, but I can change my actions.
Doesn't have to be working. I love having my zoo mornings - the baby giraffe came out into his yard for the first time today and found all kinds of interesting smells, and his father, who adores babies.. And the kids asking about the elephant tooth and laughing about the giraffe tongue and learning about the pronghorn antelope's antler and the clear hair of the polar bear.. I completely forget about my "real" life. I know only too well what you mean, Pris, Mary.. I would give anything to go abroad - esp. now that the dollar's stronger against the Euro, etc.. But AFTER...! For now I do the zoo. But it could be any number of other things - Lois has her art gallery that she works at.. there are any number of groups to join on your "day off" and YOU SHOULD HAVE A DAY OFF!! EVERYone should have a day off, however you have to arrange it.
Marilyn, I agree with you. Having a paying job would make a big difference. But, at the same time, I don't think I could have a paying job, or at least not the one I had, because it consumed so much of my life that I wouldn't have time to deal with AD. Sometimes I think it would be nice to have an 9 - 5 job, but I never had one of those. I'm glad I retired shortly before DH was diagnosed, but I do often feel at PrisR does. My life revolves around DH and AD and it's hard to think about much else. I'm trying though.
Mimi, I laughed out loud at your description of a conversation in an outdoor cafe. Yes, that can happen to us. I agree with briegull. We do have to have a day off once in a while to stay in the real world.
I really can't add anything that would contribute to the thoughts that you all have expressed so eloquently. Except to say that all of you are right on. I am invited to some friends family reunion next month that my DW and I used to attend together. We stayed with them in their homes, but, I am not going alone. I just haven't learned how to 'fit in' by myself.
I think initially, I was completely focused on taking care of my husband. Then as time has gone by, I've realized that I need to retain some of my outside interests and resume some of the things I enjoy that I had given up--for example, reading for pleasure. As I've done so, I find that when I'm in a group, I can converse about subjects other than AD. A few years ago, a friend actually told me I talked too much about Steve; at that point, although the comment was inappropriate, she was probably right!
briegull--You are absolutely right that it doesn't have to be working--I take exercise classes, have lunch with friends, do volunteer work. However, it takes some doing psychologically for many of us to take time for ourselves. With a paying job, the purpose (earning a living) I think would be a stronger motivator--less ambivalence for most people about taking time away from LO.
For me, I've never had a lot of girl friends I just "hung out" with. Only horseshow buddies for the most part for the past 15-20 years. Lots for us to talk about THERE. But, also, very competitive. So, I'm remembering when I was a young mother. When I felt so out of place among other women who weren't in my shoes at the moment. Seems like all I could know to talk about were diapers, play dates, car seats that actually kept a kid contained in it, snacks, playground equipment, Disney World, church. I felt so inadequate and stupid in the midst of intelligent women with carreer paths. Guess that's how we feel when we're trying to fit into a "normal" scene with friends. I, too, resented (still do to some degree) hearing about the new cars (why does someone need a new car when the old one isn't even paid for???), boats, trips to far off places. Why? I think, because its only a reminder to me that my opportunity to enjoy such things again is pretty remote and I just don't want to think about it. Just my take on it all.
after placing LO a month or so ago,it has dawned on me that after the yard work an normal day to day chores,I'm more alone than I was when LO was here keeping me busy 24/7,have no idea how to get on with a normal life,maybe this fall I'll see if her half of the dog would enjoy a romp in the forest
Jen - you ask why they buy a new car when the old one is not paid for? Answer: so there are good used cars for the rest of us to buy!!
Then there are those of us where our lives were just our spouses. Before we adopted the kids we both were active in softball and bowling. Once the kids arrived for some reason my hb thought it all had to stop for me. My life became my kids, our business and work. After the business failed, it was him, the kids and work. We did everything together (or so it seemed). We did try having friends for a while but after his affair they disappeared. Then we retreated back to our little world except for his ushering duties at church. For the last 7+ years it has been the RV world - working and traveling. Now we are trying to travel again while he can. My world is sitting at the computer and listening to TV.
Yesterday we drove up to the east side of Mt St Helens to see how she is coming back. We watched her blow in 1980 from an observatory just east of her, then was first back to see the destruction when the road opened in 1982. We come back about ever 5 years to check up on her. I spent my teen years at the Girl Scout camp that was once along Spirit Lake at the base of the mountain and listening to the 'legends of Spirit Lake' from Harry Truman who refused to leave his beloved mountain. Last evening we dug out our suits, went swimming and sat in the hot tub. He will go places if I suggest it but often I don't want to. Actually this is nothing new - he has been this way most of our marriage but I guess I am tired of doing the planning.
We have visited briefly with neighbors and Art went over to talk to a family group last night. They invited us over, but I will admit something: I am embarrassed by his repeating. I think that is why I avoid going to places with him or staying too long. He can't' help it but I feel sorry for those who have to listen to the same remarks especially when they don't know why.
I guess you could say I keep myself prisoner and bored by my unwarranted embarrassment.
You should NEVER be embarrassed by another person's behavior..that's a lesson in Al-Anon. No one will judge YOU harshly if the person next to you misbehaves, however it's done, whether falling down drunk or repeating questions. Surely, you've learned that little look with the "please understnand" look in your eyes...and once others "get it"... everything is OK. You deserve to go out...and when people realize what you must be doing day in and day out...well, you'll see the respect in their eyes.
My DH has been gone a little over 7 months, and I notice that I can spot an AD patient at a glance..and I always give that "look" of admiration for whoever is with him. I can see they appreciate it, too.
If others look at youquestioningly when the AD person is showing signs of you just smile slightly and nod your head. They get it, believe me. I get this a lot with clerks in stores when they don't quite understand what he's saying. The nod back and look relieved that I've validated their confusion.
Pris, that is an excellent tip. I should have done it more in the earlier stages. Now it is hardly necessary. And Nancy, I really like yours and am going to take it up. I know I do get those appreciative looks sometimes.
Good topics of conversation: books (I am in a book club), grandchildren, movies, TV (including sports), current events (anything in the newspaper), gardening, shopping, mutual acquaintances. There is really plenty even if you don't travel or go out much. My mother taught me to enjoy drawing other people out in conversation: getting them to talk about something important to them and about how they feel about things that are going on in their life makes the conversation interesting to both and I have the satisfaction of knowing I've given them a good time (and maybe learned something).
Absolutely!.... I seem to remember an old story about the young lady who went on a first date with a young man who talked incessantly about his life,his sport prowess, his fine car, his rich parents, ..on and on...ad nauseum,... She rarely got a word in edgewise. When he walked her to the door, he thanked her and commented, "You're the most interesting person I've met in a very long time!" People love talking about their self, Charlotte. When there is a lull in the conversation, simply ask questions, and sit back and smile! They'll all go home saying you were a great conversationalist.
I have always been that way - asking questions. I was great at keeping the conversation off of me. I still do it with my siblings and drives some of them crazy. But, I don't have anything to say. My kids both are failures - lazy bums that would rather live off the government than work; I have 7 grandkids but do not see 5 either due to divorce they live with their other parent and can't see them, or my daughter doesn't think her youngest is safe around me; I do see two of them and they are 2 and 4. I am not one to brag about myself, kids or grandkids - never have been. I was great at counseling because I was so skilled at asking questions. Even as we chat with people in the RV parks, it is 99% about them, not us. That is the way it always has been. I guess maybe I have been burned when opening up to people, making myself vulnerable that I fear it. I would never do in person what I have done on this website, except to a counselor. I would see no purpose except to be preached to or whatever. It has never been a good outcome. I grew up feeling like the 'black sheep' of the family and even though someone pointed out because of my faith in Christ I am a 'white sheep', I still feel like the outcast in a crowd.
But thanks for the encouragement, but after years of focusing on the people I am around, my life has changed too much to do that.
agree with Mary. Alzheimer's isn't just something attacking my spouse. It's also attacking me. It's the enemy that is trying to take my life away from me. I have to come to the realization that I can't stop AD from destroying my wife or the life I had. But I can and must fight that it doesn't also destroy me. This is hard on many fronts at once. We become seperated from what was normal. We become alone as the disease progresses. We work harder because of the demands. And we are steadily forced into a new life we didn't ask for.
It's been hard just to come to being able to imagine a life afterwards never mind wanting it or being able to see what we're doing in that life. At least it has been for me. But I'm coming around to thinking like Mary. I came to it by starting to realize that if I don't start caring about what happens to me and what I do with that - I'm just going to arrive there a mess with no ideas and that's not a pretty picture. And yet every time I tried to go there I got really angry and frustrated because I wasn't ready (not that I am now). It's getting better though because there's a voice inside that seems to know I have to find other things to care about and that I can't avoid this. The only thing that helps is trying to be more honest with myself than I ever have before. I'm not a planner and don't know what I want to be when I grow up. But this isn't trying to screw up the courage to cross the room and ask the girl to dance. This is my whole life and whether I can find honest and sincere things in my future that have meaning for me and give me a chance.
I can't just be consumed by being in dementia land as Joan put it even though that takes more and more of my time and effort and will for some years to come. And I can't just feel the hurt and saddness at the pieces I continue to lose. I also have to face a future that absolutely will be a very different life.
Alzheimer's is hunting me and because I'm so weak it's already done a lot of damage to my vitality. But I'm finally coming around to understanding that only one of us is going to come away from this battle and I have to choose that it's me. And even though I feel really guilty about thinking this I believe now that is just Alzheimer's hunting me down into a box I won't be able to get out of. All of our spouses that have AD would want us to have a life and to have our spirit intact.
You're not more boring PrisR. You are everything you were plus you are sacrificing a great deal for love. They can have the lunch chatter. They're not the ones growing through great hardship. You are.
Years ago Barbara Walters wrote a book about how to talk to anyone and gave lots of questions that work for conversation starters. When I was a single older adult and started dating again I used to bring the subject around to cars and then ask guys what their first car was. They'd ALL get a silly smile on their faces and tell the entire story about that time of their lives and what the car meant, etc. etc. etc. I really broke the ice. I guess the other day at lunch I just wasn't in the mood to rehash old college days (especially since we all went to different schools) and "cute" Rush Week stories. It had been a lousy week and I was just glad to get out of the house. After reading Barry's book about Jan, my new mantra is "Choose Life" and I'll have to remember to put on my game face and put myself out there.
Oh, what a topic. Reality is so real! My husband has been in assisted living now for 7 months and I still have not healed enough to know what to talk about. I haven't re-entered the world yet. I'm so focused on trying to get my house ready to sell and downsize. Sometimes I wonder if I know how to start over again. I don't know how to be single while I'm still marriedin a marriage where my husband doesn't know who I am.
I'm not sure what I believe yet. I think it becomes clearer when we think about it only from the point of view of our spouse if the situation were reversed. I know I would want my wife to be happy and live a life if I passed on. Yet when I think about applying that to myself I feel bad about it and have no idea what I want anyway.
In the meantime we've been stretched through a wringer, have put our own life aside and don't think that way anymore, and have so much water under the bridge that the idea of being open to something new is alien to us. I think on top of that it would be honest to mention that after so little intimacy of any kind for so long (that includes a lot of things even conversation) that's alien to us too.
I'll have my wife with me for years still. I'm thinking about it because I believe it's one of the things caregivers aren't helped with. How to start seeing themselves in or preparing for a new life because anything interesting or wanted that could be envisioned there would give some hope and substance while we go through this. I'm not really talking about other men or women. More what do I do and what am I about? How do I find the possibilities?
I believe DianeT that for you it might be a bit like how we raise our children in the sense that we keep some things back when we feel they're not ready for that yet and tell them partial truths or simpler explanations. Transitioning from one reality to another isn't easy especially when you have one leg in each. One step at a time without worrying about everything.
I might suggest reading one or two of the bestselling books and looking through the enterainment section of any newspapers more and seeing if there's an old hobby or new interest you wanted to try. Even gardening and joining the local get togethers. Consider plugging back into things YOU might like to do and I suspect some of the rest will follow.
My husband went to the hospital (and then the nursing home) almost a month ago. I'm trying to choose life. I'm beginning to replace all of the broken technology - phones, TV set, Internet modem/router. The DirecTV boxes and the computer (printer and scanner) will have to wait a little while, but they are on the list too.
Today I'm going back to the senior center to a quilt group I last saw the week before he went to the hospital. Time to see some people. Tomorrow night I'm going to my first meeting of a caregiving group. I've got a feeling it is the wrong group for me at this time. I think what I really need is a grief group and I might just look for one of those. And at some point this week I'm going to try for a second meeting with a neighbor that I went to lunch with two weeks ago.
The local camera store does classes. I took some a while back. I've got the expensive digital SLR that my husband wanted and never learned how to use. One of the lenses it came with is still in the box. Maybe I'll learn how to use it?
I am a couple weeks behind you with my DH placement. I took a leave from work for myself to heal a bit. I went to numerous support groups over the years and some were quite helpful. Some, tho, I felt shunned at. I am only 53 and most attendees that were my age were there regarding their parents. I could see the looks on these couples faces of absolute horror, like they could catch it from me..and someday it could be one of them,
I have found at this stage, that grief support groups and grief counseling has worked well for me. It opens your eyes as to the pain many people face that has nothing to do with AD. Losing a child, murdered partner etc etc. Grief is grief is grief. Especially the one on one counseling has been good to just get my story and pain listened to. I feel less that I need to burden those that have helped on my journey a little less.
I admire your commitment to re-enter your life. Baby steps. My husband has one of those fancy digital SLR cameras too. I went to read the manual and start to learn to use it the other day and realized the battery was dead and I KNEW I put the charger somewhere, but I tore the house apart for 3 hours and I just can't find it. Went to Best Buy and spent 50bucks I do not have on a new charger, cuz I want to learn the camera and have it be part of MY life now.
I went to lunch with a work friend yesterday.
I am spending time cleaning my house deeply ( hasnt been done in years.can u spell embarrassing?) getting back into reading good books, NOT having TV blaring in the background all day, enjoying being alone and quiet, gardening and taking naps. I think I may go to a matinee today or tomorrow. A bit lonely..like many of us, my only adult friendships were with his home aides and they are on to new clients now.
It's tough at this age to find friends, but right now I am just trying to learn how to live alone for the first time since I was 19. I feel very single, with a dear dear friend I visit at ALF. Everyone there keeps referring to him as my Dad, and I gently remind them..he is my husband. And always will be, even though I am "single". Strange life, huh?
We can do it, Starling..one day or one hour at a time.
Sheltifan, Last June, when my middle girl was with us and we were at the doctor's for a protime check, the nurse spoke to me and referred to my DH as my father. I didn't hear that as she didn't face me when she said that but our girl heard it..The nurse thought DH was OUR dad...I am not that much older than my girls. I inherited them..always say I had my first when I was 10....I have 3 of them..we get a kick out of that..but we have lots of fun when we are together ( so I am hoping that when things get rough with the care or worse at the end, there will be no problem. I hope I don't have problems with DHs siblings...blame etc).
Mimi - it can be fun. My oldest sister was 6 months younger than my mom. My oldest brother was 2 years younger than my mom. My dad was 21 years older than my mom. When they married they each had two then had 5 more. I was an aunt the day I was born. My mom's oldest had her first at 16 (this is the one we park our MH at). Her first husband was in the Navy, so when he went to sea she often came home. It was so fun when my nephew, 3 years younger, would call me aunt Charlotte. As a adults the same fun. I was thinner then in the 70s and he would carry me piggy back through the story saying 'getty up auntie baby'. He was 17, I was 20. Childish - I know.