MY FRIEND AND I HAVE BEEN BUDDIES FOR 50 YEARS. WHEN OUR SPOUSES WERE WELL THE 4 OF US SHARED MOST OF LIFE'S HAPPENINGS TOGETHER. NOW THE 2 OF US AND OUR SICK SPOUSES WHEN AND WHERE POSSIBLE SHARE CELEBRATIONS,HOLIDAYS WITH ALL OUR KIDS AND GRANDKIDS.WE TALK ABOUT EVERYTHING 'LAUGH TOGETHER,CRY TOGETHER. FRANKLY WE SHARE EVERYTHING BUT SEX. WE ARE BOTH TIRED, LONELY AND I FOR ONE DON'T EVEN KNOW WHAT THE RULES ARE WHEN BOTH SPOUSES ARE LIVING BUT NOT HERE IN ANY ASPECT OF A MEANINGFUL LIFE. WE ARE CLOSE, ARE DOING NOTHING WRONG MORALLY YET I FEEL LIKE I'M BEGINNING TO TO WALK INTO UNCHARTERRED TERRITOTY. ALSO WITH SUMMER APPROACHING I SHOULD MENTION WE ALL OWN A VACATION HOME ALONG WITH OUR GROWN CHILDREN.MY SPOUSE WILL NO LONGER BE ABLE TO MAKE IT AS HE'S SOON GOING TO BEGIN PALLIATIVE CARE. MY FRIENDS SPOUSE IS GOING WITH NO ENTHUSIASM AS HER WORLD HAS BECOME SMALLER AND SMALLER. THE REST OF US NEED THIS PLACE AND EACH OTHER AS A RESPITE. ARE THERE BOOKS ON THIS? IS IT OK FOR US TO OCCASIONALLY GO ON HIKES, CONCERTS OR MAYBE FILL IN FOR THE OTHER SPOUSE IN CERTAIN SETTINGS. OUR KIDS THINK THIS IS NORMAL AND SO DO WE AS THIS HAS ALWAYS BEEN THE CASE. HOWEVER,PEOPLE THAT DON'T KNOW US WELL ,ASSUME WE ARE A COUPLE IN EVERY SENSE.ANY THOUGHTS
Dear Laurel I am a former caregiver as my wife passed last fall. But my faith in God has carried me through that journey and now it is even stronger as He presses me forward telling me what to say to others who are in the journey. Just know that He is always with you and if you have the faith in Him, the Holy spirit will guide you through this next phase of your life. It sounds like you are starting to feel guilty about the feelings your having since you are still bound by your marriage vow. Loneliness is a very real emotion but so is guilt. If you motives are innocent and the time you are sharing with another lonely person whom you know quite well also feels that their motives are innocent then you are just two lonely friends seeking support form each other in a very tough and trying time. Satan will do everything in his power to cause sadness in your lives. Guilt being one of them, but the Lord through the Holy spirit will bring you peace and joy if you follow His guidance. Just focus on God and let Him guide you though. God bless you Bruce D *
Whew I think a lot of us have been thru this,you can't throw your life out the window because of spouse,I met a retired classmate that also happened to be a hospice worker,we would go out to eat an she would explain the guilt feeling I was having an what to expect down the road,we talked alot an went to casinos,estate sales,ect,nothing sexual but I knew she would have liked the relationship to be more than it was,I also explained that I just needed someone to talk to an still enjoy the things LO an I used to do.I think it all depends on the person,LO has been gone now over three months an the guilt is still there,not having done enough,argueing when I didn't know what she was going thru,why she's gone an I'm still here. Its a choice you have to make yourself,its your life an if your like alot of folks here your perhaps older also,with that being said,think of the years,months days you have left,while I would never marry again I will enjoy the time I have left an not worry about what others may think,I don't think you'll have anyone that has been a care giver think otherwise,good luck,enjoy the time left
I don't see a problem Laurel. It is my very strong opinion that company and companionship are health and life-giving forces, and are therefore good things to add to our lives.
You will find varying opinions here, but I think there is one thing that almost everyone can agree on, and that is that we have a primary objective not to bring pain to our spouses. But we know that our spouses "leave us" long before they leave us. I have plenty of support, and no judgment toward, anyone who has found the joy of companionship in the later stages of caregiving.
I think it's also worth pointing out that we're not a Board with a religious affiliation. I appreciate the insights and experiences of Bruce and others who share their thoughts in a language that carries the conviction of their faiths, but for me, I need to think about these things in terms that resonate with me, so I sometimes need to "translate" these more religiously-based expressions into a secular essence. (or at least into a non-specific spiritual language!)
Maybe the essence is that you know your heart and your needs. You also know the condition of your spouses. Use your better nature to know what's right for you. There's no one exact answer to this sort of question.
I agree with Bruce wholeheartedly. There is nothing wrong with having a close friend as your sounding board...someone who knows what your life has been all along so a lot doesn't even need to be said because it is understood. That is a gift from God. Temptation is from Satan, so you will have to resist that. My husband has had AD for a long time. He is here at home with me and it gets harder every day. I have no desire to be with anyone else and as he gets worse, he still tells me he loves me almost every day. How strange that he comprehends nothing else but the love. That is a gift that surpasses everything. Laurel, just let your faith and your heart lead you through a journey free of guilt and you will have peace.
I must step in here and remind everyone of the guidelines of the message boards regarding religious discussions. Your religious beliefs are just that - YOUR OWN - and you are certainly entitled to them. But I must insist that you refrain from telling others what you feel about Satan and God. Those are your beliefs and may not be those of others. It may not seem so to you, but to others, it sounds like preaching, and that is strictly forbidden here. We have members of ALL faiths and NO faiths here, which means that not everyone believes the same as everyone else. It is in order to respect those differences that I have restricted religious discussions.
Laurel has asked for advice about a friendship - please answer her question as best you can without including your religious beliefs. Any future references to your personal religious beliefs will be deleted.
Laurel, how fortunate you are to have such a friend! I believe that there is nothing wrong in continuing this friendship...you both obviously need the support and understanding you can give each other. People who don't know you will form their own opinions regardless of what you do...let them! You and your friend and families know the truth, and what will be, will be...whatever the future brings.
Laurel...Having lived many years through many different experiences, I have found that our concerns about what others think is probably not really as great as we think it is because they don't have the time to give us a great deal of thought. Yes, they may think...."Bob is doing this, Betty is doing that and I could never do that type of thing regardless of what it is" but, those are fleeting thoughts...then they are back to their own lives Which is the way it should be and the way life really is.
Also, others have not walked in our shoes and they have no real reference to what it is like. Each person has their own path to follow...don't let anyone's opinion cause you not to follow the path that makes you happy or gives you pleasure. It is your life. When I get in the position you are in where I begin to worry about what others think, I tell myself..."Self...what makes you think you are so important that others really spend a great deal of time thinking about you" Then I go my way and do what I want to do and don't give the other person much thought at all.
Laurel, you owe us nor any one else any explanation of having a FRIEND....what ever the sex of that friend is. Good people are good people and friendships are priceless. Relax and know that you and your Friend are finding comfort in a very difficult time. What a gift for you both :)
LAURAL I agree totally with Emily. I am currently involved in a life situation comparable to yours. ( long time friend's wife, she's now a widow - Alz ). I find the companionship enhances my ability to care for DW. Just having soneone close with whom I can relate to, talk to and she to me. Having someone, who understands what it means to watch the love of your life's mind gradually disintegrate, has had a dramatic impact on my ability to tolerate and cope with the stresses we all deal with each day in our role as caregiver.( someone who can fill some of the voids) Her presence has not altered my prime life goal, that being, to make DW's every moment comfortable and pleasant. That commitment remains steadfast. I don't, nor do my children, perceive my companionship as a violation of any vows taken with DW, as quite clearly that person no longer no exists.
LAURAL, I've been there and done that, and my experience was pretty well captured by a feature writer for the AARP Bulletin a couple of years ago -- you can read about it at http://www.aarp.org/relationships/love-sex/info-09-2010/till_dementia_do_us_part.html if you're interested. Once I accepted the inevitability of my DW's upcoming death, and with full understanding and encouragement from family and friends, the old engineer in me began working the problem of where do we go from here. I knew I wouldn't want to be alone, nor would my DW have wanted or expected me to be alone, so I just continued seeing my DW's best friend (a long time family friend -- we had all partied together, raised kids together, etc. and had maintained a close relationship for fifty some years) after my DW was no longer able to go out with us, and our relationship just grew closer as time went on. Long story short, we married seven months after DW's death and I've never sensed any disapproval from any quarter. And I've been too busy fashioning a new life to wallow in grief. So, as someone else suggested, I wouldn't worry much about what others might think, I'd just go ahead and do what feels right for you.
Laurel--Please get a copy of a book by Barry Petersen, called Jan's Story. The subject of the book is what you have described--the need for a dementia caregiver to find someone to share their life with, because although their spouse is still living, they are no longer the person they were. Nowhere is it written that we have to stop living because of our spouse's illness; if finding a companion is what one wants, then I say, go for it!
My DH likes to go panning for gold..he still gets out with his pals some. He always had an expression, " If you know it's gold it is, if you think it's gold it ain't" . I guess a sort of translation might be that each one knows what is right or wrong based on their own upbringing. If you find yourself in a relationship, while your spouse is still with you, despite the condition, you will know if what your are doing is gold..then it is ok...if you aren't sure..well the old adage I was taught was " If in doubt, don't"..so it ain't gold....
Each of us knows deep down what is the right thing to do in our own situation. This disease is cruel to both the victim and the spouse....it robs us of everything that others take for granted. No one sits in judgement here abouts..I hope this made a little sense...
Laurel - Long before my DH had AD, I met a woman whose DH had the disease and she had a male friend. I wondered how she did it, but I had no idea what AD really was. I came to understand her actions. Later, a woman in my AD group had a long-time romance and at the same time her DH was at home and she was his devoted CG. Again, I wondered. Try to find the movie 'Away From Her.' The roles are reversed but an AD wife is in a home and doesn't know her husband--and what he does about it. We all have our inner contracts with ourselves from society, family, religion. If you do not neglect your DH and do not hurt the other wife, I agree with your children. Let other people 'wonder' just as I did before it happened to me. It's none of their business and they're not about to report you to anyone.
THANK YOU ALL VERY MUCH. YOUR BOOK, ARTICLE AND FILM SUGGESTIONS WERE REALLY APPRECIATED. I ALSO APPRECIATED YOUR INSIGHTS AND EXPERIENCES. WE'RE IN OUR MID 60S AND IT SEEMS LIKE WHEN I VISIT THE NH MANY OF THE CARE GIVER SPOUSES HAVE GIVEN UP ON ANY KIND OF AN INDEPENDENT OR FULFILLING LIFE.I SPENT MANY YEARS CARING FOR MY HUSBAND AT HOME UNTIL IT BECAME VERY DANGEROUS WITH WANDERING AND SAFETY ISSUES OVERTAKING ALL OTHER CONSIDERATIONS. THAT WAS FOLLOWED BY MY FEELING LIKE I HAD COULD HAVE DONE MORE AND WAS QUITE DEPRESSED FOR A LONG TIME. THIS YEAR I REACHED OUT TO FRIENDS AGAIN, GOT SOME THERAPY, THREW MYSELF INTO PLAYING WITH OR SKYPING OUR GRANDKIDS AND STARTED LIVING ONCE AGAIN. IT IS PAINFUL TO SEE OTHERS I LOVE NOW GO THROUGH THE SAME SITUATION. I AM SO THANKFUL FOR THEIR SUPPORT AND SO WANT TO HELP THEM AND OTHERS AS WELL . THIS FRIEND AND HIS WIFE WERE MY LIFELINES FOR MANY YEARS. IT IS UNBELIEVABLY PAINFUL TO WATCH THE SITUATION MY HUSBAND AND I WERE IN NOW PLAY OUT WITH THEM.I WISH I COULD STOP THE HURTING FOR THEM BUT ANY DISEASE WHICH INVOLVES DEMENTIA IS LIKE WATCHING A SAD HORROR FLICK IN SLOW MOTION WITH NO PAUSE,ERASE OR REWIND BUTTONS AVAILABLE.I AM LIVING IN THE PRESENT FINALLY ABLE TO TAP INTO MY PEACE AND JOY RESERVES,YET FILLED WITH EMPATHY FOR ANY WHO ARE GRIPPED IN THE DARK SOUL OF DEMENTIA. WE ARE PLANNING A SPECIAL LIFE CELEBRATION WHILE MY HUSBAND IS STILL ALIVE. BOTH FAMILIES ARE GOING TO ENJOY LIFE THIS SUMMER TO THE BEST OF OUR ABILITIES.I AM SO THRILLED TO BE ABLE TO ENJOY THE SUNRISE,WATCH SHOOTING STARS,SMELL FLOWERS AND FIND JOY IN DRAGONFLIES . IT IS SO GREAT TO HAVE CLIMBED OUT OF NUMB AND GREY AND START LIVING AGAIN. WHERE TOMORROW IS HEADED I HAVE NO IDEA BUT I FOR ONE AM THRILLED TO BE ALIVE, WITH GOOD FRIENDS AND FAMILY. I KNOW IT WILL NOT BE SMOOTH SAILING AND I MAY HAVE A CRE TO SAIL WITH OR I MAY SAIL SOLO. BOTH WAYS HAVE SOME APPEAL, BUT IN EITHER CASE I'VE GOT MY HOPE AND LOVE OF LIFE BACK.
THE ABOVE ENTRY IS FROM LAUREL. IT'S LATE AND I FORGOT TO SIGN MY NAME, ALSO THE THIRD TO THE LAST SENTENCE SHOULD READ ...AND I MAY CHOOSE TO HAVE A TEAM TO SAIL WITH OR I MAY SAIL SOLO OR IT COULD BE BOTH DEPENDING ON THE SITUATION.BOTH WAYS HAVE SOME APPEAL. BUT IN EITHER CASE I'LL ENJOY THE TRIP WITH MY HOPE AND LOVE OF LIFE BACK. MAY YOU ALL BE SAFE. LAUREL