The current issue of the AARP bulletin, which can be read online at http://www.aarp.org/bulletin/, was updated today to include an article entitled "Till Dementia Do Us Part" written by Cynthia Ramnarace. If you recall, Cynthia had contacted Joan some months ago about possibly interviewing members of our Alzheimer Spouse message board about "secondary relationships when one spouse has AD", and Joan had encouraged contact by anyone willing to be interviewed. I don't know how many others might have agreed to be interviewed, but in any event I did, and my "story" ended up getting prominent coverage in the article -- perhaps because I had agreed for my name to be used? Anyhow, if you're interested in reading the article, it's the first of four lead articles that appear in the pane at the top right of the home page -- under a heading of "Love In The Time Of Alzheimer's".
Great article, GC. Some months ago you asked me about a friend who was visiting and wondered if she would be to me what Joyce is to you. This might happen, but she is in Rhode Island and I am in Maine - a 6 hour drive. We see her 2-3 times a year.
Yes, I thought Cynthia did a good job of telling my story, but after our second toddy tonight Joyce admitted that she was more than a little put off by Cynthia's use of the word "paramour" -- sending me to Webster's Unabridged dictionary to see what the word really meant. I had just sort of hurriedly read across the word, taking it to mean "a second love" or something of the sort, but now I can see where Joyce might be upset -- Webster's first definition is "an illicit lover, especially of a married person, as a man's mistress", which certainly wasn't a fair portrayal of Joyce's role. I hope I won't be in the doghouse for too long over that....
Marsh, what with the distances involved, it looks like you may have to find a way to start "wooing" your RI friend via frequent phone calls or emails or whatever.
I really like the article. The word paramour jumped out at me too--it's not a word I've ever heard anyone actually say, but read in old historical novels. I don't blame Joyce for being offended, but you shouldn't be in the doghouse either!
Interesting that you said you would be willing to be a dementia caregiver again, if the situation would arise. We've been 5 yrs since dx, no end in sight, I can't imagine that I would have the fortitude to ever do this again! Have we discussed that subject here? Perhaps we should have a thread on it?
Marilyn...I am inclined to think "never again" also. Who can predict the future though? If another relationship should come into my life, how exactly would I arrange to hold myself at arms' length so that it wouldn't happen? I don't know.
I agree, Emily. I'm sure none of us ever thought we'd be here today - looking back many, many years ago. We never know what life is going to throw to us - I think we just take it as it comes and deal with it the best we can. No, I wouldn't WANT to do it again, but if it happened, I think I could do it.
Great article, thanks for sharing your story GC. We're 2 years (officially) into this journey with no end in sight at this point, but I do know I would never do this again. So kudos to you but I'm praying that you will never have to do this again either. Once is enough for a lifetime. May you and Joyce have many happy, healthy years together.
Emily--maybe my feelings are based on the fact that we always knew this might happen, my husband's Dad had EOAD. Good question--how does one "hold themselves at arm's length"--ask for genetic testing? Proof of a LTC policy? Just kidding--but maybe I'm not! I guess I'm not as much of a romantic now as when I was young.
marilyninMD said: <<Interesting that you said you would be willing to be a dementia caregiver again, if the situation would arise. We've been 5 yrs since dx, no end in sight, I can't imagine that I would have the fortitude to ever do this again! Have we discussed that subject here? Perhaps we should have a thread on it?>>
I'd be interested in contributing to that thread if someone starts it -- but not for a week or so. My son and I are leaving in about an hour for a week long trip back to MS to visit kinfolks, teach a few gourd carving classes, and check on two of Frances's sisters who also have AD and maybe are no longer receiving all the help they need in an ALF. Joyce has a pretty full calendar of meetings (book club, Junior Service League, St. Margaret's Council, and a hair appointment) to keep her occupied while I'm gone.
One aspect of that question of being willing to consider another stint of caregiving is that it presumes that we would love deeply again, and I expect lots of us would risk it in order to love deeply again.
Yeah...I almost feel like I'd want to enter the relationship with an agreement though...if this starts to happen to ME, I will enter an ALF, effective immediately and vice versa. Would we actually stick to it when the time came? I don't know. I am as reluctant and fearful of putting someone else in the position of caring for me as I am of caring for someone else.
Before this ever happened,I decided that if my husband died before me I would NOT get into another relationship....maybe have a male friend to go to dinner with or the movies, but not a romantic relationship. (someone would really have to sweep me off my feet for me to change my mind). Now, in the light of what has transpired in the last few years, I definitely won't look for another realtionship. I would not want to take the chance that I would have to go through this again. OR as emily said I would not want to take the chance of putting someone else in the position of having to care for me.
It's not that I wouldn't want a man for ocassional companionship, as a dinner date, conversation, and "fringe benefits", but to marry again? I cannot imagine it. I can't do this again, and I agree with Elaine - I wouldn't want to put someone in the position of having to spend his last years as my caregiver. If there is anything left of me when this is over, I hope to concentrate on me - doing what I want, when I want, with or without whomever I want. Maybe that will get tiresome and lonely, but I think for awhile, it is something I will need.
As for the theme of the article - finding a relationship while the spouse with AD is still living - if that is what will make you happy, then do it. No one who hasn't walked in our shoes could understand or should judge.
I had the same reaction to the word 'paramour' I find it interesting that the women seem to think they can have an ongoing 'friendship' with no romance at all, just get taken out to dinner. Get real, gals. No man will settle for that.
Awwwwww..Pris, you are bursting my bubble... I didn't get married until I was 28 and I had a lot of male friends that took me out dining and dancing knowing there would be no "romancing". Okay, I'll grant you that "back in the day" things were different than they are today.
Just read the article. This is so great. Yes, I think men want fringe benefits & so do many of the ladies. I know it's not always easy to find, and I'd not want to remarry, enjoy my freedom too much now, but a good relationship--even long-distance, that I'd like.
I think it must be much easier for a man to find a significant other...than a woman. Both before and AFTER. I've observed in our Over 55 group at church and in the Museum Guild, the men usually show up at parties with a lady friend...and the women arrive alone. I just wish I had a phone friend of the masculine gender who would call and ask, "How are you doing?"...and share some stories about life beyond that of my own.
Joan, I felt very much like you did up until recently. As I've moved along in my grief process, I am now finding myself overwhelmingly lonely. I think when the time is right and when the right guy comes along, I would get into a relationship again, marriage, not so much.
GC: I'm going to read your article now, looking forward to it. Thanks for being brave enough to share more of the Dementia Journey with the world. They continue to need enlightenment!
I, too, thought "Paramour" was a poor choice of words.
After Mother died, Dad went to only 1 senior dinner. He said all the women wanted to share lunch w/him. He chose my step-mother in his own time--two years after Mother had died and told us kids, "It's lonely." I told him I hoped he felt more for her than just filling his lonely spot or he wasn't being fair to her. He was furious and very rude to my grandmother when a gentleman friend called on her. Easier for men to find a woman because there are more of us left than men left alone.
This topic also affects those who lose loved ones from Cancer and other things.
A close friend lost his wife in February from it and brought to my suprise 60th party a new 'friend'. We're a warm bunch and even though we loved the wife that died, we welcomed her into a tight group of 13 that has 35 years under their belt. She was great. By the end of the evening he was being openly affectionate with her with his hands on her shoulder or on her arm.
The thing is the next day he emailed me telling me they had a serious talk and weren't on the 'same page'. He hoped they could still be friends.
Unfortunately I know this man well and while he has many redeeming qualities and is quite well off, he doesn't cook, clean, or shop to save his life and needs a partner. She fit the bill but apparently wasn't as 'plug and play' and he needed.
I know this sounds cynical. I think it's very hard to find someone later in life. I think if we have too many preconceptions either way - it's not going to happen. I don't believe this girl will be the last we see this with my friend. I wonder if any older person can pass all the tests when we have too many preconceptions. We were much more open people when we first said 'I do'.
Others are completely on the other side of this boat and while they don't admit it to themselves, have no intention of opening up to new people let alone with romance as a possibility.
I don't know what the right answers are. I know that before I ever buy a new car again I'll be kicking the tires thinking about it for a long time. I think the friendship part is what a lot of us will be looking for. Like what Nancy B said. The trick I know is to go to the places we like, sharpen our conversational skills, shake off the defensive/closed side of us, and start conversations. Not so easy. But that's what it will take.
I also agree it will be easier as a man to find a woman. By surviving longer I will get relatively rarer. But the key is talking to people with an open mind on having an interesting conversation. And part of that is getting out and taking an interest in life again. I also think it's healthy for us mentally to move towards thinking of ourselves as single people taking care of our loved ones. We are moving to that whether we like it or not.
Joan, I agree with you. I will do everything possible for my husband as long as I can. Would I want to chance another relationship and have to deal with this or have someone to deal with me with this horrible disease? No. Absolutely not. Maybe I'm just to old? LOL!!! I want some ME time!!
I have just read this and I commend GC for having the courage to do this interview. I am sharing the link on FaceBook. Wishing GC and Joyce many years of happiness.
My son's therapist asked my son to leave the room during one session, and asked me if I'd considered "moving on". I'm sure she's thinking that it would be best for the boys to have a man in their lives who would be a "father" to them.
I can't imagine being with anyone else. But it's hard to be alone. And I feel sometimes like I'm being selfish for not opening myself up to the possibility of finding someone to fill the void in their lives. At 5, 10, and 12, they really do need a dad. But I worry it would be the wrong person, and I don't even trust my own judgement in this area. I'm clouded by grief and despair much of the time.
I think if a therapist suggested that to me I would be shocked...I realize the children need a father figure in their lives but it sounds so cold to say " have you considered MOVING ON"..How about an uncle if there is not a Big Brothers organization?
With children so young this is a terrible thing for all of you and I can only imagine your stress about this.
I wonder if there are any kinds of camps for kids who have parents with difficult diseases? They have them for kids who are ill and when they come together they can identify with one another and still have fun..if we don't have something for our kids with an ill parent, we should.
kelly5000--Check into the Big Brothers Organization and also Boy Scouts or the like. Some churches also have youth organizations which could provide masculie role models nd friendships. For our Daughter I connected with Big Sisters to provide her a supportive feminine outlet when DH's mental illness and my disability precluded many opportunities I felt she needed.
After my Dad died at 50, a gentleman at church was leader of the Scout Pack and became my brother's mentor (brother was 10 when Dad passed). To this day he is a special member of my brother's family.
As for you moving on...you'll know when it's time and if/when there might be a new someone special you'll know that too. And that someone will be the right one for your boys too--YOU'LL KNOW. IMHO the counselor was off base, given the situation you described.
kelly 5000 - I think the therapist was out of line. You should "move on" when you are ready. Bringing a man into your life just to give the boys a father figure is not fair to anyone. As others have said, there are other ways to give the boys male influence in their lives without getting into a relationship before you are ready.
I think you're right, PrisR. She went on to say that I need more in my life than working, taking care of the kids, and looking in on DH. She said that DH would likely want more for us. I think she's right. But I told her that I can't imagine being with anyone else. Still, there are times when I'm at my wits end and feeling that it would be so much easier and better if they had a man in their lives to show them the way.
I looked into Big Brothers/Big Sisters once, and went for an interview with a coordinator, even though my older boys said they didn't want a "big brother". I felt a bit discouraged when they said there was a waiting list. I would have to go through the home visit/screening process, but there was no telling how long it would take for someone to become available.
Anyways, I agree with carosi, that if I ever am ready to move forward, I'll know. Every time I think about it, I want to cry. I just can't imagine someone else filling DH's "shoes".