For example, the support groups around me are during the day, so that is one of the reasons I find this site so helpful. I am 55 and still working because I have to.
I am looking and feeling really old. How about you? Any ideas that have worked for you?
Yeah...sometimes when it hits this early you do end up feeling like they made a mistake and accidentally gave you an 80 year old's life. (apologies to 80 year olds who obviously don't want this life any more than we do.) I had that creeping sense of turning older than I otherwise felt. (I'm 48. Husband with AD is 62.) I'm starting to feel a little better. I don't know why for sure, but I think it has partly to do with the sense of detachment I've achieved from my marriage/partnership as-it-was...instead I've morphed back into my single self of a couple decades and a half ago and am viewing my caregiving aspect as a duty that I happen to have in life, but not as the defining characteristic of who I am. It's the old "emotional divorce" and I think I may finally have done it.
My marriage was something lovely I had, but is now a memory. I'm taking care of and loving the person who remains, but I'm not so much a grieving bereft spouse, as a caring single caregiver. It may be a psychological trick, but you do what you can in this game!
Meanwhile, despite the obvious limitations that being a caregiver places on one's freedom as a "single person" (and again, obviously I mean this from the standpoint of self-image,) I try to engage in activities that interest me while keeping my LO as happy as can be done.
Sometimes life is just a matter of analyzing the parameters within which you're currently playing, considering, objectively, what a person in just your situation should do as a self-care strategy, then doing it.
I am 56 and DW is 63. I am wanting to go back to work, I had a head hunter call recently and I think I can now find work if I want to. I have spent the last 2 yrs doing the bucket list with her and now she is mostly a home body and I am feeling the need to move on with my life and get back to work and make sure she is being taken care of while I work. I know that she wants me to stay with her, but I think I need to start the "emotional divorce".
I'm 54 and it is one of my frustrations with the local support groups--not only are most of the spouses 20 years older than me but because they are mostly a different generation and I live in the south, I don't find many people feeling the shock of losing a feminist marriage with equal sharing of tasks. Emily said a lot of what I feel--my phrasing has been this is the task I have been given. One thing I'm doing is trying to find some ways to connect my focus on caregiving to my work. I gave a presentation yesterday on "Feminism, Caregiving, and Appropriate Technology" at a conference on Gender, Bodies and Technology.
I am 57 and have been unemployed for almost 2 years now except for the occasional bookkeeping I do for a couple people. In 2003 we moved in to our motorhome due to job losses - home or motorhome and we choose to keep the motorhome. We Workamped for 5 years before this disease brought that to a screeching halt. We did do a month of camp hosting last winter but have not been able to find any for the summer. Most people want a man that can do many things. He probably could do propane pumping (has in the past) but due to his memory problems I would not put a park in that liability issue. The last two weeks I have been catching up one lady's books and I have enjoyed the break from being with him 24/7 immensely. It is hard to get moving in the morning but once I get there the juices start flowing, my brain starts working and I feel alive.
I hadn't thought of feeling older but I guess I do. When I look at dh, how old he seems to look and move now (age 62) I feel older. I am noticing a few gray hairs - I have been blessed with them not showing up until this last year.I had done the switch to caregiver only - sort of put him in the end stage already until something was posted her a few weeks ago. I am now trying to find ways to enjoy what he still can do which is a lot. What really makes me feel old is when I look at the pics of high school friends. I am just getting in touch with them via Facebook and we have our 40 year reunion this summer. The only one I made previously is my 5th. Due to all the weight I have gained, especially since his diagnosis in 2008, I am having trouble committing to going. Oh well.
Since I have not been single since I was 18 I really can't say what a single lifestyle is!
Dog, I agree with you totally, I have been to 2 meetings so far and just don’t feel like there is a connection with everybody else there. It isn’t that they aren’t friendly and inviting, they are both and they welcomed me with open arms. I am no more in touch with them than they are with me. WE are very simply two different generations at two very different points of our life that just happen to be going though the same thing. It is still very hard for me to accept that Kathryn has EOAD and that it is fatal. I can not believe yet in my heart that I will someday loss her to this. We are only one month apart in age and planned on a great life together as I am sure everyone does. Maybe it is because we were married late in life or because it happened so early in our life together, or so suddenly. I ’m not sure.
Sorry, I just read the post by DarleneC and it hurts me for her and every one else that has to post the loss of their Loved One every time I see it posted. I tend to get off track sometimes when I think about it.
I do wish there was an EOAD support group some where near by. I have never even heard of one before. If there was one anywhere near Jacksonville Florida I would be very willing to drive almost any distance to attend it. I think it would be a great help.
I see that several on this post and others have been able to either start or make an "emotional divorce". From their Loved One and I do understand what it means and that it is not a bad thing to do. I’m not sure it is in my makeup to be able to do that. It isn’t that I am any better or worse than anybody else I just don’t think I can do that. I hope that I will be able to in the future when the time comes that there would be a benefit to it but I’m just don’t know.
I think the term "emotional divorce" sounds bad, but since I've been processing the loss of my "normal" relationship for about 6 years now I'm able to grasp what is meant by the term. There probably should be a better word, but--at some level--the psychological hoops that one needs to jump through to get through this gig ARE as wrenching as a divorce, so my feelings are mixed about its appropriateness.
I will try to explain what it means to me: I loved my marriage. My good relationship with J lasted roughly 20 years, from first dating to the onset of the creeping alienation of AD. When I say I took the relationship for granted, I mean that in the best way--that who I was and how I felt was defined and shaped in large part by being a half of the unit E&J. So, to have that leaking away--to have the part of J's brain that supplied the J aspect of the E&J unit--failing, left me confused, lonely, bereft, and all those other things that everyone here pretty much understands. (Here, btw, is a blog post where I attempted to describe what my marriage meant-- http://messandclutter.blogspot.com/2010/04/i-can-explain.html )
Anyway, I could not have sustained 6 years of living as half of a sundered unit, and I could certainly not, unilaterally, supply all the emotional energy required to make it "feel like" the old relationship--that was the remarkable chemical interaction of two compatible elements. One alone can't fake it.
So "emotional divorce" does not mean abandoning the aspect of J which remains, either emotionally or geographically. It does mean that I had to take my selfhood and patch it up--make myself into something that could be emotionally sustainable as an independently operating unit (albeit one with an obligation to care for another.) I make all decisions, I emotionally buffer myself, and I have to be able to feel ok about that, in the same way that any un-partnered person has to be able to feel content about singlehood.
In part, it's a wall. To expose the part of me that once meshed beautifully with J is to invite heartbreak to the surface. So I have to be someone else, who does not carry the assumption that she is part of a relationship.
Emily, you expressed your feelings very well. I too, did much the same "separation" in Paul and my relationship. We were also partners working together in several businesses we owned and made decisions together. I actually "lost" myself as an individual person. So, I had to re-invent my life - more or less - as you are. It has helped me with coping now. I am ok - because I have been working at again being my own person for several years - knew what was coming - accepted that I could not change things. Not that I like it. I miss being half of a whole. I miss pillow talk. I have always had a loving man in my life and I miss that. I miss socializing. I miss having strong arms to lean on.
That said, I do enjoy being in control of my life now. I can eat when I want and do what I want, when I want. I see the world through new eyes now.
I follow your blogs along with several others and enjoy your writings. You are doing good. I wish you well on your upcoming train trip - sounds wonderful.
(sorry Joan, I am much past 50's but in this case the same things apply)
The blog on emotional divorce is in the previous blog section on the left side of the home page. Click previous blogs. Then click 2007. Click November. Click #87. If you prefer to copy and paste - http://www.thealzheimerspouse.com/blogs-11-2007.html
Within that blog is the link to the article written by Dr. Marvin Fredman - The Emotional Divorce - http://www.zarcrom.com/users/alzheimers/ca-09.html
When I was first introduced to that article, I couldn't even read the whole thing, I was so upset. I understand it better now.
As for the problems of finding younger people for an EOAD support group - you have two choices - pest your local Alzheimer's group to start one OR, as Alice did in the book, Still Alice, start one yourself. I know if sounds like a big undertaking, but at first, it can be as simple as a monthly get-together at your home.
I have to leave now to take Sid to an appointment. If you you are interested in more information on starting an EOAD support group, e-mail me.
I will be glad to set up a category here on the boards just for EOAD if anyone wants me to.
Although at the 'upper end' of dealing with EOAD ... my wife experienced AD symptoms at 60 but due to a series of incorrect diagnoses (anxiety, then stress, then depression) she wasn't officially diagnosed until a year ago when she turned 63 ... and we both turn 64 this year ... you already know, Joan, from both some of my online postings and some of our private email exchanges that I think The Alzheimer's Association has TOTALLY dropped the ball on this. They provide all sorts of daycare activities for those with moderate to severe AD ... but support groups for those with EOAD or for their spouses are, sadly, pretty much the same as when Still Alice was written. In other words, basically they are non-existent. Same with support groups for those in early stages ... almost non-existent. Fortunately, both my wife and I ARE able to attend support groups sponsored by a different organization ... the Long Island Alzheimer's Association ... but the LIAF groups are for those with early to moderate stages and most people in our groups are between 75-85. I can relate to the 'different generation' problems noted by others on this discussion thread. I HAVE taken your advice, though, and am trying to start new support groups where we live. That being said, I would love to see a category here on the boards just for EOAD!! Thanks.
Emotional divorce, yup . . . been there done that. My greatest fear was planning for the future. Once I (emotionally) planned for a future alone, then I could go along with what was happening.
Support groups? Been there and done that too. Los Angeles Alz Assoc Memory club. The meetings were all 0900-1200(!) I had to take off 40+ hours off of work to attend. I asked about night/evening activities and it was as if they had never heard of such a thing.
Finally I found a once a month local group it meets 1900-2100 hours. Small nice bunch and a couple of younger people (AD parents)
FYI- I am 51 wife is 59 (symptoms started at 55 – she quit work at 57)
Wife is still surprisingly capable. My (80 y/o) parents arranged to have her accompany them to the Senior Center lunch program. It is all "old" people (too old for me) but wife fits in fine! She laughs and jokes and has a good time. I went once, but as mentioned they are of a different generation.
Now, why are there problems with the Alz Assoc and other organizations recognizing "EOAD"?
First - the AA just published their report and it seems that AD IS still an "old Persons" disease. http://www.alz.org/documents_custom/report_alzfactsfigures2010.pdf
"An estimated 5.3 million Americans of all ages have Alzheimer’s disease. This figure includes 5.1 million people aged 65 and older and [only?] 200,000 individuals under age 65 who have younger-onset Alzheimer’s. The Alzheimer’s Association estimates that there are 500,000 Americans younger than 65 with Alzheimer’s and other dementias. Of these, approximately 40 percent are estimated to have Alzheimer’s."
Perhaps there are just so "few" of us (EOAD) that it is not realistic to expect the recognition (services?) that the older folks will get. What is left out however . . . . (and PLEASE you older folks, don’t take this wrong!) It is us younger people who are still active!
Taking care of an AD person is difficult, but if you are still working (and cant stop working because you cant economically retire) then it is even more difficult. Maybe you were an active 70+ y/o and now caregiving has forced you to become more 'inactive'. That is unfortunate but at age 50, I CANNOT just sit down become inactive. When evaluating disease and injury in medicine there is the concept of “number of productive years lost”. If AD comes to a younger person then it is technically worse because there are more productive years lost.
On this message board, personally I don’t feel a need for any separate EOAD section. What makes this site work is that it is NOT divided by age but by our relationship with the AD person. We are united because the person with AD is not our parents or grandparents. Whatever our age differences, we are 100% equal about the effects of AD on our marriage.
The second point about “EOAD” The one that is my pet peeve.
From the AA report: "Most Americans with Alzheimer’s disease are aged 65 or older, although individuals younger than age 65 can also develop the disease. When Alzheimer’s or another dementia is recognized in a person under age 65, these conditions are referred to as “younger-onset” or “early-onset” Alzheimer’s or “younger-onset” or “early-onset” dementia."
When we speak about AD please DO NOT use the word “EARLY” onset! ‘Younger’ yes, but not early.
When you (we) use the word “early” to describe AD before the arbitrary age of 65, it means that AD is “on time” after age 65! AD comes when AD comes, the age does not matter. It is ALWAYS wrong.
Dementia is ALWAYS a condition that needs a good medical evaluation to arrive at a quality diagnosis and a plan to provide for treatment that will maintain maximum function. If AD is ‘on time’ after age 65 then it is a ‘normal’ part of the aging process and does not require an evaluation and does not require treatment. All untrue facts.
Do you wonder why your PCP did not look for AD when the symptoms developed? Possibly because they bought into this myth. “Symptoms at age 50?, I donno what it is, but it sure cant be AD! They are too young” “Hummm memory loss at age 80? Awww there’s probably nothing wrong, no need to prescribe anything because you cant do anything about getting old anyway . . . ”
So please help the cause and when we talk about AD, remind the public that AD (and other dementias) does occur long before age 65 and ANY memory or personality changes always need a good complete evaluation.
My husband was dx 5 years ago at 60, I was 56 at that time. At times I do feel that my life has fast-forwarded 20 or 30 years while I wasn't looking, and the word I would use to describe it best is surreal. Ive accepted it and am no longer angry. I don't feel I've been able to do the emotional divorce thing; for me, it's been more like a gradual shift into the world of single motherhood of an impaired, very young child.
m-mman: I stopped using "early onset" a while back because I think it's easily confused with early stage. I think the term young onset is used in Europe and is a lot clearer.
The MD chapter of the Alz Association is a leader in the cause of younger onset dementias--it comes right from the Director. I agree with what was said above, if your chapter isn't responsive, you need to ramp up the pressure.
Believe it or not, although there are many downsides, I think there are a few "advantages" when the dementia hits earlier--we caregivers are younger and thus are less apt to have our own health issues to deal with. Many days, I've asked myself, how would I be able to deal with this (physically and mentally) 20 or 30 years from now, when it's such a struggle at this age? Surely it would be harder later on. And working is a dual-edged sword; sure it complicates caregiving, but it also is a sort of enforced respite.
Dog, I am 54 and still work full time. DH goes to day care several days a week, and I count on family and friends to help. I can't tell you how to cope, because I don't do that very well. I know it sounds cliche, but one day at a time. I have the same experience with support groups. I am the youngest, and I don't feel like I'm taken seriously. Thier loss, I have a lot to offer, they just don't want to hear it. I'm so sick of hearing "when you get to be my age".... I respect that they have more living experience, but come on, we're all in the same boat, right? I've never experienced that sentiment here on this site, which is why it is so invaluable to all of us. Bob, I read the article Joan referred to on emotional divorce. I completely understand, but I'm not there yet. I wish you the very best on that journey, it's something we all have to do at some point. I'm proud of you for making the decision to move forward. I know when it is my time, there will be plenty of people to support me. God Bless!
I'm 56, DW is 51. Far as I can tell she's 'looney as a toon' anymore. Won't consider going to a dr for the 'ruling out' physical cause, of course, there's nothing wrong with her. Must be me, eh? Seriously, my son told my sister who told me just the other day that " un ", I'm getting stronger every day. I feel it too.
I've learned it's not my job to see that she's "doctorized" and gets in the "system proper". I Know! The sooner the dx, or the dx is ruled out, the sooner proper "doctorization" can begin and the less looney she may be for the longest time. But the fact is there are no true and fast facts in these circumstances. It's almost killed me a couple of times in the last year learning these 'non' facts, so I do have a clue at least. I'm coping very well for now I'd say. But, not without help.
I've always been a fool for researching subjects that I was interested in or concerned about. The www is a God send. This site, and the people here, have been an invaluable asset and will continue to be long as I can access it. The FTD support forum has been the same. My oldest son and my sister know my DW very well and have been quite aware of her personality and behavioral changes over these past few years. In that I guess I might be lucky. In the end we'll all cope with our stations in life no matter if it's being a care giver for a spouse with dementia, or whatever. We simply have not much of a choice.
I have a plaque that hangs on my office wall that says; "Don't hurry, Don't Worry, Do your best, and leave the rest". Too often I've found myself in trouble when I've strayed too far away from that philosophy.
My sincere thanks to all of you for your thoughtful comments. You've given me much to think about and reconcile. I am in awe of your honesty, strength and generousity in your sharings. You are a wondeful group pf people.
Emily, I am in a similar situation. My DH is 58 and I am 53. He is now in stage 7 and cannot do anything for himself. It's been a long haul. I've also become emotionally divorced. I have mourned his loss (and continue to do so) and i am now finding peace in loving him as he is now.
Hi Dog, I think you will find the folks on this site are the best kind of folks and are very giving. I don't believe you will ever be sorry for coming to this site. I know I have been helped a lot more than I have helped and can only hope that some day I will be able to return the help to others as much as in the future.
JoanG, I have been thinking about this all weekend long and I came to the same conclusion you did. That I could start a group right here in Jacksonville. I have already talked to my Lodge about using the building and they have agreed to let the group use it. My really big problem is I have no idea what the next step is. I can get the word out but where do you get knowledgeable speakers? I would think I may be able to get Kathryn’s Doctor to come and speak at least once in a while.
I understand that being a support group each person would be a speaker during meetings, that we would be sharing ideas and providing input, and we would all benefit from each others experience in that respect. But much of our knowledge would be OJT (which has value) but, there would also be a need for a subject matter expert at times.
I am going to give it a try. I think it will take a month or two to get everything in place to start. If you or anyone here have anything you believe would be of help please feel free to email me. My email is jgb182@comcast.net.
JimB
PS I also think that having everyone here use the same blog is a good thing. There are so many different views on any one subject and I wouldn’t want to change that.
It would be helpful, for me, to be able to contact another man dealing with some of the same problems by private email. I am not always comfortable talking to a woman about everything. I think it is my southern up bringing that gets in my way in those cases.
I have a close friend (as a matter of fact we are lunching today) who started an Early Onset Support Group in our area, when her husband was diagnosed. I think he passed away 5 years ago, so I'd say she's been at it for 10 years. I'm sure she would be happy to talk with you about what she did when she started, and other tips about group dynamics, etc. I'll ask her today at lunch. How would I give you my email address without posting publicly?
Write to Jim at the e-mail address he provided in the post above yours, and he will get your e-mail address that way.
Jim,
I HAVE to go to the gym this morning, but I will be working on the website all day when I return. At that time, I will give you more information about starting a group. Good for you!
Here's what I have decided to do. This is a huge issue with many EOAD patients and caregivers everywhere - all over the world (read Debby in Australia's tale of woe). I am going to write a comprehensive blog about EOAD issues, how to start a face-to- face support group, how to faciliatate it, how to get speakers, which speakers to get, etc. etc. It will be posted either tomorrow or Thursday. Probably Thursday. I need time to make sure I cover everything properly.
I do have a DVD of one of my workshops on communication strategies - how to speak to a PWD (person with dementia) so they will understand you. It will be available soon for public sale. It's an easier and much cheaper way for groups and facilities to hear my workshops without having to fly me around the country and pay a speaker's fee.
JoanG, you can take a little more time than that (and Joan, thank you for everything). It will be about a month or so before I can get this rolling. My Lodge is remodeling a carriage house and it will be that long before it is ready or close to it. They are going to put in A/C and a flat screen TV and chairs. I think it will be good for holding meetings. I do have one question for everyone that is still working. When would be a better time for meetings? Would Saturday mornings or a weekday in evenings be better? And what time? Either works for me and I can get the room whatever day and time I want it. Some input on this would be helpful.
I have had several emails for some of the folks here already including a couple of guys that I will be able to talk to in private. I will not be able to get back to anyone until after Sunday because I am taking Kathryn to Disney World of the next four days. We are going to float along in Castaway creek for a day and then spend a day at Garden show in Epcot and go to That circus thing (Surc-D-sulay) Not sure how you spell that and a comedy club. These are all things we have done in the past and she really enjoyed them so I am going to give them another shot.
Anyhow, we will be back Sunday evening and I will get started working toward getting the support group going.
I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. It is a primer on how to start your own face to face Young Onset Support Group. I will e-mail Jim to let him know that it is up, and will still be there when he returns from vacation.
Hello Every one, I am new to this message board, but so relieved to find people in my position. I am 52 my spouse just turned 67, diagnosed right before his 65 birthday offically, but now that I have learned more about the disease I realize just how long he as had it, I can go back atleast 7-10 years prior, I just thought he did not care any more..we had kind of drifted apart. We have been married 22 years with 2 teenage daughters. This is a devastating desease. Because of our age difference I too feel like I fast fowarded in my life and I am really struggling to figure it all out. I do not know any one in my situation so it is a very lonley life right now. I have some relief in my blog sherizeee.blogspot.com but it still feels very lonley,Any advice for a group in Twin Cities area of Minnesota would be very helpful. Thank so much for this board.
Welcome Sherizeee, you have landed in the right place and will find lots of help,tips and love here. Other members will be along soon to welcome you. If you feel like it there are"stickies" at the top where you can add information on where you live and ages of your spouse and yourself. Again welcome, just sorry you have the need to be here.
Welcome Sherizee, sorry you have a need for us. I'm 51 and my husband is 60. He was diagnosed almost two years ago at 58 with FTD (frontotemporal dementia). My husband is healthly, other than the FTD, and able to take care of his personal needs but can't be left alone due to his behaviors and the fact that his reasoning and judgement is gone. I stay sane by having him attend day care 3 times a week. This allows me to be more patient and lets me do some things for myself. I do miss being able to go out in the evening with girlfriends or family members as there is no one to watch my husband. We have two children in their twenties. One is out of the country and the other is busy with her own life--full-time job and school.
Welcome to my website. You have come to a place of comfort for spouses/partners who are trying to cope with the Alzheimer's/dementia of their husband/wife/partner. The issues we face in dealing with a spouse/partner with this disease are so different from the issues faced by children and grandchildren caregivers. We discuss all of those issues here - loss of intimacy; social contact; conversation; anger; resentment; stress; and pain of living with the stranger that Alzheimer's Disease has put in place of our beloved spouse/partner.
The message boards are only part of this website. Please be sure to log onto the home page - www.thealzheimerspouse.com - and read all of the resources on the left side. I recommend starting with "Newly Diagnosed/New Member" and "Understanding the Dementia Experience". There are 4 sections for EOAD members - two of which focus on the young teens whose parents have EOAD (early onset AD). There is a great section on informative videos, and another excellent resource - Early Onset Dementia - A Practical Guide. You can go to the top of this page, click on "search", and type in EOAD, making sure the "topic" circle is filled in. All of the EOAD discussions will come up - there are about a dozen of them.
Do not miss the "previous blog" section. It is there you will find a huge array of topics with which you can relate. There is a "search" feature on the home page that allows you to look up different topics that may have been explored in a previous blog. Log onto the home page daily for new blogs; news updates; important information.
As for starting a support group, I recently wrote an instructional blog about that. It is still on the home page - www.thealzheimerspouse.com - down toward the bottom - April 28/29 - Young Onset - Starting Your Own Support Group.