I wanted to post this but not sure where, so I started this thread. For all of my adult life, I've read the NY Times on Sundays. Being a fashion fan, my favorite section (which I read first) has always been Style. For the last several years, there has been a column each week about a particular day in the life of an actual NYC woman, who outlines what she wore to her various activities all day. In the past, I sometimes read the column, with no negative reactions. Today, I read it, and thought "What a ridiculous waste of space. With all the sorrow in the world, why do they even bother with such junk? Who cares what designer labels this woman wore (and that she changed 5 times during one day)?" I doubt that I would have ever had that reaction before my life was overtaken by AD caregiving. Has anyone else noticed this type of change in your outlook?
Absolutely, I just don`t give a hoot what people think of me or my home or what I am doing or how. Fashion OMG If you could see what my standard day wear is....jogging pants with t-shirt. I used to always be well dressed. I think for me it is the daily grind of caregiving with a good dose of depression, life is bleak and simple aging. As I get older my list of important stuff gets smaller.
I agree, MarilynMD, my outlook on things has changed drastically over the past 10 years of caregiving. Things that were important then aren't now. I think with the concentration on our new 'job' our perspective can't help but change. Hopefully, for the better. Then when the 'after' comes, perhaps, just perhaps, we are able to move on to better things.
Yes, Vickie, I'm not in "after" yet. But when I moved Steve 2 years ago, I was able to start resuming some of my former activities. However, as I explained above, I see the world somewhat differently now, and I think it's for the better.
I agree. Some things became much less important to me. However, some of my escape stuff, which might seem childish to others, became more important because they are my slice of sanity.
But I also try to be more sympathetic about the problems in others lives. Some stuff might seem silly to me but it is important to them right now. But if asked for my opinion, and only then, I will give my opinion on perspective.
And what I might think is very silly, celebrity news, might be another's escape from unhappiness. And I have my own silliness to keep myself sane.
Oh, have I ever noticed how my priorities have changed. How could we not? This disease is a life-altering bitch!
I am finding that some of the changes have been positive and some negative. For example, I am much more sympathetic to others and I have become a better listener. On the other hand, I believe I have become shorter tempered (probably do to sleep deprivation). Also, I am becoming self-centered. I would like to put myself in first position rather than his needs coming before mine. It's always about him.....people will ask about him, but hey, "what about me!" "Remember me? "Don't I count?"
I am not a big television person nor have I ever been, but I would just like to sit down and read a good book uninterrupted. I would love to be able to pack my bag and in a moments notice grab a flight for a holiday. I would love to live for the moment without worries....just me, myself, and I....carefree. Living life and enjoying each day and enjoying the pleasures of life.
Marilyn-you posted exactly what I was telling a friend about today. I am in the after and still trying to heal. Sparkling windows don't interest me any more. Being with friends is more important than ironing clothes. I now proudly admit that when I finally find my ironing board I have to dust it and then go look for the iron. Coping with an FTD spouse has put things in perspective like nothing else ever could. I value a blooming orchid or a butterfly. I am seeing things I never noticed before. Last night I sat with a new widow. I volunteer with hospice and often sat with her husband so she could get out of the house. Before FTD I didn't know how isolating it can be for the caregiver. I now understand why people pull away. They don't know what to say to you. AS I sat with the widow and her daughter we all found we could be comfortable using the word DEATH. This widow had given so much of herself to our community that she was comfortable finally receiving. We discussed grieving-laughed and cried about it-but in a wholesome way. We talked about what really is important and what plain doesn't matter. Marilyn-thanks for giving me the opportunity to put in writing what I have been thinking about all day.
A big AMEN to all of the above!!!! I have noticed such a change in myself, in my perspective on things & life in general - maybe more appreciative of little things, not so concerned about the superfluous. I started to write more thoughts, but it wasn't coming out like I wanted - I guess that's another change! Brain fog...
Reality was never the same from the moment we received the diagnosis and our worst fears were confirmed.
Marilyn reading The News of The Week in Review was replaced by the need to be obsessingly vigilant due to DW's repeated thoughts of and half hearted suicidal attempts. Her mother had AD, DW knew what the future held as we had cared for her Mom until placement after 3yrs and wanted no part of it. With meds, the disease progressing and a super therapist the sucidial thoughts gradually faded. Outlook on life alteration comparable to a bomb blast Chapter 2 I love to cook and entertain... it's the clean Up I hate. Our "social contract" of who does the dishes ended, as did the entertaining. ( I didn't mind filling the dishwasher it's emptying it I really really hated. We'd still visit with friends and go out to dinner until sundowning/hyperactivity precluded her from sitting at a table. She be up and down every 5 min. One solution that worked for a while was buffet type restraurants. That came to an end when her spitting started. Serious attitude adjustment from going out to fine dining spots several times a week, late nights at the bar etc loving the golden years to a life of social isolation -- certainly attitude adjustment #2. #3 Then an awakening totally unexpected ...Several yrs ago a close friend of 20+ yrs was DX'ed with Cancer of pancreas, liver and brain. He declined all treatment choosing Hospice care. The 4 of us were always close friends became even closer, I resumed doing all the shopping & cooking for all of us. Our friend's wife watched DW while I got out took care of clean up, lots of paper plates and I'd care for G and DW and let her get out, go to a movie, etc. We live in the same bldg. and we were at one point all living together to help with "G"'s care. He was a big man and even with an aide getting him to b-room, out of bed, etc took 3 of us. DW's paceing and spitting was a minor distraction in the total scheme of things, she'd try to help G holding his Kindle or whatever she was capable of doing to help at the time. " G" passed comfortably with a little help from the MS pump, thanks to a sympathetic Hospice nurse, who respected his requests, surrounded by love and friendship. The mutual support friendship and sharing made the loss all the more tolerable for our friends wife. That close frienship remains today -we fill the voids in each others lives. like you I see the world differently
Marilyn, so true. You do change your outlook. I just overlook the nonsense now. I find that I am more sympathetic and more tolerant and much more patient. I'm just going with the flow these days. Just taking each day as it comes. Carol
Marilyn so very true. how can we not be changed? I value life a lot more. sympathetic, empathy for pain and suffering, and in general a much changed personality when it comes to caring.
Marilyn, yes our lives and perspectives change after living with this disease...there's no way you cannot be changed. I have become less patient and tolerant for people who complain about little things (no suffering fools). I do not have the patience to listen to "non" problems. I am however more compassionate, sympathetic and empathetic to those who are truly struggling with significant issues in their lives. As Amber says I think getting older also helps you change your priorities. I no longer want or need extra "stuff" in my life.
Changed perspectives, definitely. Some good, some not so great. I certainly have acquired a sense of the importance of just living life without worrying too much about the "shoulds." On the less positive side, I've come to realize that I'd suppressed the sense of loss you'd expect to have in losing your spouse to AD, in order to carry out the necessities of life--childrearing, working out business issues, being a researcher and caregiver. So what's happened is it's surfacing in an unexpected way this year, and giving me a somewhat PTSD-like fearfulness about losing someone I care about.
Excellent topic Marilyn. Yes, I too have changed in so many different ways.
bluedaze* I love what you wrote and how I wish we lived closer. When "our time comes", I would be blessed to have someone such as you there with us. You have been such a wonderful mentor to me! So much heartache, so much pain... yet you didn't become hard and bitter. Instead you opened your already broken heart to take in other's suffering, to help them at their weakest. I admire you so much and when I grow up, I hope to be just like you ♥
Marty, your post brought tears to my eyes......
Emily, I appreciate what you said about being overly fearful of losing someone you care about. I have taken it to another extreme... if you are not already in my heart, you just are not getting in!!! That is not to say that I don't care about new people I have met (other residents for example, I just cannot help how much I care about these abandoned souls) BUT, I only let people in so far.... I will NEVER give all of me to another person again. It just hurts too damn much to lose them.
Most all of my changes have been for the better. I definitely appreciate more deeply, give more freely and know what has meaningful value. The one negative is though I do care more for my fellow man and try to be more sympathetic, I have lost my ability to gracefully handle "whiners". Now I know that sounds so harsh and it goes against how I want to be... but man, I am so tired of whining over petty crap. I just want to shake people and tell them how lucky they are! Tell them to stop wasting this precious time ....don't you know it can all be ripped from you at any moment!!?? Take in everything you have and be damn grateful!... and just love one another...
I have come a loooooong way, but I am still a work in progress.....
Nikki--this is the first time I can remember disagreeing with you!!!!! :) I understand you saying "I will never give all of me to another person again." But you cannot know that for a fact. I felt similarly, then met someone, and here I am in lala land once again! Yes, the hurt of loss is horrendous, but the wonder of finding love again--especially if one has lost it--is amazing.
hmmmmm, I consider you a smart cookie Marilyn, so I will heed your words and concede that I cannot know that for a fact. BUT (yes, there is always a but lol) I do believe I am correct in my assessment for myself.
I guess I have already concluded I could not possibly love another as I love Lynn. That is pretty much written in stone. So it makes perfect sense to me that I wouldn't be giving my everything to anyone again. We have had this talk before, how no it couldn't possibly be the same, it's different.....and that you found love again makes me so happy for you! But I am curious, you haven't held back at all? You just freely gave your everything to another person? You didn't hold back at least a piece of you that nothing can destroy again?
Nikki--well, yes, Steve is my soulmate and I guess I believe that there's only one of those to a customer. BUT, this is a different time in my life and I'm a different person now--I think I have different needs now. So what's wrong with giving 80 percent, 90 percent--it's still great and that's close enough to being all of me! I'm not minimizing what another loss would entail, but when you said "if you're not already in my heart, you're just not getting in" it sounded like you don't want to fall in love again for fear what another loss would do to you. Did I misinterpret? I guess I'm willing to take the risk to have the benefits.
I honestly think my attitude on this is due to the compounding loss of two of the most important people in my life; Lynn and my Dad. Dad took his life right smack in the middle of my darkest times with coming to terms with the horrific losses of Lynn. Family is a different love of course, but I do love them completely and unconditionally as well, they too have all of me. Losing both of my heroes nearly destroyed me.
I guess I have simplified it in my mind to just as I cannot have another Dad, I cannot have another Lynn.
No you didn't misinterpret, but it isn't just a mate I am holding at a distance. It's all people and even animals. Awww yeah, that's an adorable puppy! And NO I do not want to hold him! I realize I have taken it to an extreme.......
There is absolutely nothing wrong with giving 80 or 90 percent... that you feel comfortable and are in lala land, well that is just fantastic!! I know just hearing from those of you who have found love again brings much hope to others.
I am a bit proud of myself that I was able to drag myself out of the unrelenting abyss, dust myself off and work towards finding myself and happiness again. I am not nearly ready to even think about dating, but when and if I do, I am thinking the most I could give would be 50% ...... I could be wrong, we all continue to change and grow (if we are lucky) But this is where my thoughts are here and now.
What a great discussion. My husband has been in an ALF for 3 months now and I feel very detached from the every day goings on around me. I don't read the paper or watch the news. It all seems so trivial to me.
I guess I'd say that I am less judgmental of people's choices, but that may be that I cannot summon the energy to care much about anything other than how he is doing when I'm not with him and soaking up all of him that I can when I am visiting. He knows who I am and wants me with him. I find myself pretending that he does not have this disease, that he is not going to get worse and die, that everything is normal. My head and heart are consumed with him.
I've said repeatedly that I do not want to get involved with anyone again because I just cannot handle this caregiving gig again and of course as we all age, everyone is going to get some godawful disease or another. Not sure what that says about my attitude, but I also realize its too early for me to think about those things. Especially cause I'm in denial that the end of our wonderful life together has come. I'm indulging in a big timeout from life. Not sure when that will change but again, I just don't care!
Marilyn, I am so happy for your happiness. This life is so short, it should be celebrated.
Nikki, I had thought about your double losses with your Dad and Lynn. I'm sure that compounds any feelings that you have on the issue of giving your heart again. You have done an amazing job in recovering emotionally from the losses--I remember the intense struggle you had--it came through in your posts.
I do post about my relationship to give hope to others. During the worst times around here, I doubted that I could ever love again. But it has been 8 plus years since Steve's dx--and I had noticed changes prior to that. It's a cliche to say that time is a healer, but it's true. And I think it's precisely because I had such a wonderful marriage that I had hope for the future. Yes, you won't find another Lynn, and I won't find another Steve. That's ok. Many good women never have that kind of man in their lives at all--we were fortunate, even if their loss has been almost more than we can bear.
My new guy has been so supportive from the beginning and says he'll be there for me all the way through Steve's illness. I think because Steve and I never had children together, it means even more for me to have this source of love and support from another partner.
Fiona, on the flip side, I think about the fact that I may need a caregiver someday. Yes. I don't want to be in that role again myself, but I guess I've accepted that I'll do it if I have to. Just hope and pray that if it happens, it's not dementia!!!!!!! I took care of both my parents (neither had dementia) and it was a completely different thing.
Oh Nikki & Fiona, I SO agree with you. I will NEVER (I know people say “never say never”, but I am saying it.......NEVER!) have a serious relationship again. But you know what........that is something I decided BEFORE the AZ monster took up residence here. My main reason now is what Fiona said.......I just don't EVER want to be a caregiver again for someone I love who has AZ.
marilyn, you said that you don't want to be a caregiver again, but you would do it if you had too. Well you are a better person than me, because I don't want to & if it means not getting into a serious relationship then I am OK with that. I am happy for you that you have found someone who is so supportive & loving to you.
Anyway, since Tom has been in the Veterans Home I have discovered that I don't mind living alone.......in fact I kinda like it. I guess having my daughter & 3 grandkids right across the street helps. Each of us has to do what we feel is best for us.
I'm happy for Marilyn too. I'm not sure it matters what road we go down. I have no interest in looking for someone and I don't think I have any blocks up against life happening to me like that. But it's not on the radar.
My thoughts are focused on finding who I am now and what I do in this time. I want to feel good about my life and I'm willing to work for that by helping myself face what has all happened and learning to take steps towards genuinely getting over the serious issues dementia causes us.
In all honesty between being in a quasi grieving period and going through the post care giver period, having put her in a home, I'm not actually looking to complicate my life further right now.
I feel pretty good overall for someone who's had his head kicked in for 7 years. You can say what you like and you can feel what you like; but, anyone who graduates from here is a tough nut in ways that count.
Or maybe they just genuinely want to feel better where they can't change reality. I don't know.
Totally agree! Being a caregiver really changes your perspective on life. I believe everything happens for a reason and I often think "what was the reason for my DH getting Alzheimers?" One of the things is that it has truly made be appreciate the life I have, my family and friends, all this world has to offer, every little moment... I don't take things for granted anymore. It made me realize most everyone has "something" they are dealing with Unfortunately I am now annoyed with people when they gripe about insignificant/petty things... but I do remind them that life is short and not to sweat the small stuff. Hopefully they appreciate me reminding them of that...
Thanks, but no thanks. I'm with Nikki. Lloyd has been gone since February and sorry, I'm not the least bit interested in forging another serious relationship. Forget it. No one will ever compare to Lloyd much less be an exact duplicate minus the Alzheimer's. I have me and my family. I don't need a man. Besides I like myself enough to be on my own...I'm once again my own best company...as I was when Lloyd found me.
Just had a thought, I know, everyone stand back :)
My DH is my second marriage. What if after my first divorce I had said no more. I'm done with men and marriage. I would have missed out on two step kids, our daughter and growing as a family. Finding that I could love again. And so many trips and adventures.
When I look at it this way, I guess I will never totally close the door on new adventures.
As someone said, there is no right or wrong. A lot depends on one's situation in life (children or no children, other family relationships), age, and life experiences. Also, some people have many single friends--I happen not to. So not being part of a couple put a real crimp in my social life. Bottom line, I guess I wasn't ready to be essentially single again at age 56 (age I was at his dx).
We're just all different folks! I alluded to the anxiety I experience in my new relationship, and it is EASILY traceable to the slow, painful, and not-entirely-processed loss of a really beautiful marriage.
Like Marilyn, I would attribute my willingness and interest in loving again to how much I loved my marriage. It was too good a thing to think I would never experience anything akin to that again. (and Jeff started drifting away from me in my early 40s...so yeah...I just wasn't ready for love to be gone from my life.)
Sometimes you just know stuff about yourself, and Nikki has stated plainly what she knows about herself. I had a different sort of knowing...that I could give it up one more time (and just one more...this is it kids,) for another person.
About the prospect of caregiving again? Somehow I have a greater fear of ME being the one who forgets HIM this time. Maybe because I know I've already gone through the other scenario and survived. And yeah...as we all know, there WILL be loss of some shape down the road. Life ain't pretty all the time, but I guess I'd rather just heave-ho myself into it, at risk of making a mess, and fully live it.
Actually, I hoped I'd be a cooler person and be happy unto myself, doing what I want to do, coming, going...cool, independent, self-contained. Turns out I just seem to happier in-relationship, and I'll have to accept that about myself. It's not neediness, it's just a state of being that feels most right to me.
I wish I was young enough to start over. On my own-healthy and active-but alone. I would like to have someone to share my small victories and defeats. However-I never will be a caregiver again.
This is my 3rd time around. My first true love died of heart attack after 18 wonderful years, 7 years later another wonderful man came into my life, we were married 5 years, after 3 years he started being mean, didn't want to let me visit my children, or them visit me, etc. I divorced him, still loved him. 4 years later he was dx'd. I felt terrible, he had remarried, she left him 2 days After dx. I did as much as I could for him. I married Bill 10 years later. I'm glad I have had this life, it's not been easy. My Bill tells me daily he loves me, and doesn't know what he would do without me. When he started being mean, I looked for the warning signs, and tried to get the Dr. To listen. He has both vas.d, and alz. We have a long road ahead and we will do it together. We really don't know what we will do if someone special comes along. Bonnie
bjblyghtnin (hope I got that correct!) You have been through so very much - you are a real trooper! You must have a very positive outlook on life's hills & valleys, especially when there seems to be too many valleys! Keep on keepin' on.......
No more for me...I'm done and this is my first time around. With all the agitation, aggression,violence, uncontrollable behavior (even with meds) I never want to do this again. Don't get me wrong we had a wonderful marriage and were each others best friends but after years of the violence directed towards me even before the diagnosis, I'm just not willing to do this again. I am physically compromised and need the care...someone has to be my caregiver and quite frankly I don't see that on the horizon.
I'm not talking about caregiving...I would NOT do that for any man again. The only person I would be willing to care for is my sister, no one else. And as for another relationship, maybe casual sex, maybe occasional social events but absolutely no long term relationship with or without an agreement. As I said, I'm done.
Oh, I wouldn't do it again. (long-term caregiving, that is.) i wouldnt wish it on him, and i don't think i've got the heart to repeat it. By pre-agreement we'd both have to have chosen a living arrangement for ourselves. I think that's what I'd do anyway.
I would not get married again! This is my second marriage . First for 23 years and now 13 years. After my first marriage , I said I'd never say never. I was open to another marriage and had an exciting, romantic courtship the Second time. Unfortunately, this has not lasted that long. Now I say NEVER AGAIN! That is if I get through this ,
I will be ready to stay single after this. I can't/won't go thru this again. I'm starting to think I may need to sell out and move closer to family, before he gets too far along. I don't know if I can get thru this by myself. It certainly is a life changer. I am so happy that I found this site, and to know others understand, and don't think he just can't remember. His is somehow different than my mother and former husband, maybe that's because he also has vas d. I have soooo much to learn, thank you for teaching me. Bonnie