We met 16 months ago, and have not been apart since then. He is sad, lonely, drinks too much, will not open up to counseling. I suggested the counseling for him and also for his grown children. They all seem to be in denial. His wife is in the late stages of Early Onset. She does not talk, is in a wheelchair, has fallen a number of times, and lashed out at the nurses and some of the residents where she now residents, she sleeps a lot of the day, and is agitated for the most part. They seem to keep changing her medication, but he does not question this.
From all accounts she was a lovely person, and they were married for 37 years. The last 12 or so years the disease was diagnosed and she was at home until August 2013.
He is reticent to tell his children that he has a friend, a single Mom(me) raising a 14 yr. I do not expect him to tell them any great detail just that he has someone in his life who is a support to him. I feel he needs to be honest with them and himself. I care for him, and he feels that we have a future together.
I can empathize and understand to a certain degree how he is feeling. I lost my first husband when he was only 47 to cancer. It was a sad, sorrowful time for me and I was a single parent to my older son as well. I am a strong person and independent. My feeling is if he can not or will not tell his grown children and his two sisters about me, I can not remain in the background. It makes me feel uncomfortable. Like it is something to be shameful about, or guilty. I do not do shame or guilty. I belief that life is short, and as we have both experienced your life can change over night and at the end of the day, what is more profound or imperative than love, companionship and honesty. I do not want but most probably will receive some judgmental comments, that is fine, but what I am hoping to hear is do I continue to be with this man who I love, or step back and let him work through this alone. I feel he was to do some of the work. He has disappointed me twice now by telling me he told his family and they were okay with him "dating". It is much more than that. To me that was hurtful. I mentioned this to him again last night and he said he would call them all, and he did not. So, what is the answer. I appreciate any time spent on my behalf and welcome constructive comments.
From your post you are clearly a very practical person and there's nothing wrong with that.
Your timeframes however are pushing the boundries of his emotional readiness. His reactions after 10 months of his wife in a home are normal where you should be aware in your experiences that most people around you aren't as practical as you are.
I think that for you this would be uphill for years because I can tell you it's extremely unlikely he will divorce her and she has a real chance of being there for some years to come. If such a scenario feels like being in the background, I think your frustrations will grow exponentially.
I agree with Wolf. He does not appear to be ready to tell his family about you. That does not mean he doesn't have feelings for you, but this is a very tough, long, hard road with emotions all over the place. Please do not worry about being judged here on this site. There is absolutely no right or wrong way to go about these relationships. Each person needs to make their own decision about what is comfortable for them and best for them and their spouse. Good luck with whatever you choose.
Your needs and time frames are polar opposites to this man. To be honest, pushing him like this probably adds to his emotional dismay.
It sounds like he is trying the best he can to navigate a horrid disease. Truly those of us on this site often speak of only those spouses of an Alzheimer/dementia loved one can truly understand the inherent complexities.
I am an RN and have been surrounded by this disease my entire career. I thought I knew something about it. However, after experiencing it now 24/7 for years I realize I knew nothing about it. Nothing about what spouses go through. The toughest journey thus far in my life.
Based on your note, I am thinking he gains a great deal from your support. And, you obviously gain a lot from the relationship as well to still be in it.
However, if you do not want to be in the background, you have some big decisions to make.
I wish you all the best. Life is short and we deserve to live it fully however we can manage to make that look like.
I have to say that no caregiver or a person with Alzheimer’s spouse started a relationship outside of their marriage and has abandoned their spouse, at least the people I know of, I guess it’s a way for the caregivers to take care of themselves while caring for their spouse. Like Lady golfer said I don’t think he’s ready and there’s a possibility of you being in the background.
My thoughts on this is for you to go back and remember how you felt when your hubby died and how long did it take before you were ready to move on and let someone else in your life. Even though she hasn't died he is going through a grieving period...my hubby in now in care 8 months and though I'm doing good.... in my opinion... I know I'm still going through the grieving period.
Then the second thing that jumped out to me was his drinking....now I drink and used to have those cocktails in the evening to self medicate oneself so I could shut out what was happening and can sleep....is he slowing down or increasing or staying the same? When my hubby was placed I immediately started slowing down to where I'm now am what society would call a social drinker....once in a while at a social event and only a couple.
Telling people....I know I was really wishy washy when he was home and I was in the thick of caregiving... I'm coming out of it now but still any big decision I still can't get it together to make a firm decision and all my friends and family tell me to not do anything until at the bare minimum a year has pasted. So his not telling anyone maybe it's because he is torn between his loyalty to his wife...married 37 years is a long time to start moving on....he just isn't able to make a decision. You have to give him time to heal, time to become strong, time to find himself again. Do NOT expect him NOR pressure him to divorce her...he sounds like a really good guy and just couldn't abandon her.
or pressure him to choose between his wife and family or you. That is what I am reading between the lines. I would suggest to back off, enjoy the friendship/relationship on his terms. If you can't then you need to move on.
Even though you lost your husband to cancer, loosing a spouse to Alzheimer's is so different. AD is a disease that destroys all of them including the brain. Cancer - for majority of cancer their brain and personality is usually still there.
there is a reason this disease is called 'The Long Goodbye'
Taking care of a someone with AD is like living in an insane asylum. Since he has been doing this for 12 years, he has been living under great stress for an unusually long time. The stress may have abated a little since his wife went to into LTC but I would guess he is in no way back to normal. Putting more stress on him might not be a good idea. Too bad he didn’t take up on your suggestion of counseling.
Not knowing anything about his grown children or his sisters, it’s not possible to know why he has not told them that he has someone special in his life. Maybe his children would take offense that he is seeing someone else while he is still married to their mother. Or maybe he is trying to protect your relationship by not exposing you to their criticism.
What about if instead of telling his family about you, he introduced you to one of them in a casual way, with no explanations offered? For example, taking you with him when he stops to drop something off at one of their houses. That would at least break the ice.
I can speak from experience because I have a good male friend who is supporting me through this. My husband was placed almost a year ago and God only knows how long this will go on. He tells me that my husband is my first priority and he tells me all the time that he is content being in the background. I am not ready to tell my kids anything partly because I really do want to do the right thing and partly because I doubt they will understand my need for support When the time is right we will tell my family together. Right now I am not ready and try to focus on spending quality time with my husband. My friend and I live 3 hours apart so we do not spend that much time together. My suggestion is don't push the guy. I have been married over 40 years and it takes a long time to grieve that long of a marriage. I have thought even after my husband passes, I am still going to need alone time and not in any hurry. Alzheimer's is a very different disease and the grieving goes on for years before they die.
Why has admin not stepped in, This is an alzheimerspouse support forum. Admin has reminded numerous other of this. Kasha is not a spouse of someone with dementia. Perhaps someone knows of a site that would help Kasha out with this situation.
Kasha, perhaps you would find better support on the alxheimer association's website www.alz.org and visit their message boards. They have many different forums, like the spouse/partner forum where you might find others in your same situation.
My message board monitor and I have been carefully watching this thread. I have not stepped in until now because the discussion has given you – the Alzheimer Spouses- the opportunity to make some excellent points. Many of you are in relationships while you are caring for your spouse. It is an extremely difficult situation. The Alzheimer Spouse is under enormous stress and pressure by being a caregiver to his/her demented spouse. It takes its toll emotionally, physically, and mentally. The last thing they need is pressure from a new partner. It takes an unimaginable amount of patience and understanding from the “new partner” to be able to sustain a relationship with an Alzheimer Spouse. I think that point has been made to Kasha – that if she is to remain in the relationship, she must do so on the Alzheimer Husband’s terms. His main responsibility is to his demented wife. He cannot be pressured to give Kasha more than he is able. If that requires her to remain in the background, she either has to accept it or terminate the relationship.
Since that main point has been made, I do not believe anymore needs to be said. I have sent a private e-mail to Kasha, as I do to all non-spouses who post here.
BTW, coincidentally, "outside relationships" happens to be the subject of one of my upcoming blogs.
I feel it is fine for someone that isn't a "spouse" to come here and ask the questions Kasha did and she did it with respect and was only looking for information from the point of view from other spouses in the caregiver situation. She wasn't looking to join into other discussions and she just stay on this one topic she started. If you are uncomfortable then don't read the thread or respond.
It also gives us "spouses" a look at what if some day someone comes into our lives on how they are thinking and feeling. I think this is a relevant topic for us about another path we may well travel in the future. Though I don't want this forum to become a place where anyone can come this topic is something we need to think about. I'm in my 50's and I hope there is some one else that I will meet to share the rest of my life with and if hubby is still living how do I go about making it work.
I hope everyone realizes that anyone can come here and read what we have written there is no blocking here and I hope it always stays the same.
Finally if the only thing I get out of this journey is to be able to pass on some of the things I've learned then at least there is one good thing that has come out of this horrible disease.
I agree Amber and I think that's why Joan let it run for a while. If anyone goes off topic it's me and there Joan has also occassionally sent me an emai directing my comments.
Advice to Kasha-- The situation you describe troubles me from the standpoint that the man doesn't seem to have come to grips with how he feels about having you in his life (hence, the lack of total openness,) and the drinking suggests he's having some coping struggles in general.
It can work, provided the spouse who is still caring for the Alzheimer's patient has been honest with him/herself that he/she is acting with all that integrity means to him/her. That's the job of the person with the sick spouse. To have done some self-examination, and made an honest, open choice.
The job of the the third person (you, in this case,) is to recognize that the caregiving spouse has a primary obligation to see his/her spouse's needs through to the end, and that this could, at times, trump the absolute freedom to be with you. It is also crucial that you have also done this self-examination, and that you both recognize that there will be no harm done to the ill spouse from your relationship. (Therefore, I can only recommend it for situations in which the ill spouse is truly past the point of awareness.)
Sneaking or non-disclosure seems to possibly suggest that someone is not comfortable with his decision.
emily, I agree with you that anyone who decides to have an extra-martial relationship should make sure that it does not cause any harm to the spouse with AD and the best guarantee of this would be waiting until that spouse is past the point of awareness.
But look at the discussion that divvi put TTT - the one that was started a few years ago by Henry VT. He proposed a 3-way relationship, with the second woman helping him to take care of his wife. He said he was very honest and open with his wife about his plan. So I guess this would be the extreme opposite of sneaking or non-disclosure. You are right, this needs to be talked out.
This is among the most interesting topics discussed here primarily because it's one of the few topics that deals exclusively with the needs of us, the caregivers. While it's certainly possible to love an Alzheimer's patient, I think it becomes increasingly hard to be IN love with one. A marriage should involve give and take, but I suggest that we, as caregivers, do all the giving. Not the basis for a loving, passionate romantic marriage. Some can turn off that "switch" and find fulfillment from other things. Others live with the frustration and become bitter shadows of who they were. Still others enjoy being thought of as martyrs and take pride in essentially sacrificing themselves. Some of us decide that we need the love and affection that our spouses can no longer provide. It takes very special people to negotiate this particular obstacle course. Not single but not really married. Living in the shadows, subject to the judgement of friends and family. Never forgetting that our spouses need our care.
We all have to decide how we're going to navigate our way through this world. There are no "how to" books. We all have to take care of ourselves in order to take care of our spouses, and only we can decide how best to do it.
I am just coming on to the discussion late in the game and did see the Admin reply. The points made by others were interesting. There is one thing I did pick up though and it was in a comment by one of the members here who is supportive of someone but is happy to be in the background, keeping in mind that the spouse of the friend was of most importance. Therein lies a difference...The original post while expressing concern for her friend of some 16 months, was more concerned with her standing and becoming impatient with this man who is in the ALZ living hell.
I totally agree with the comment that was made contrasting a person suffering a terminal disease such as cancer with those with a dementia...it really is different. I have often thought about this with regard to my brother who lost his wife to lung cancer almost 3 years ago ( will be in 9 more days)...yes she suffered terribly and bravely. And he is up to his ears in grief still...I don't see him coming to terms yet...it is so individual and I know how he suffers with out her...but I also know that before she went into surgery, they were able to talk and she knew she was having a repair to a perforated stomach caused by the drugs. My husband died not yet a year ago...we could not carry on conversations of real merit about things or watch a movie and talk about it..I would have to tell him who was who and doing what in a film...and the last night of his life, when I wanted to stay at the hospital, he said to me " Go on home and get some sleep. I'll see you in the morning." I went home a wife and woke up to learn I was now a widow..it all sucks... But when one becomes involved in a relationship with someone who is the spouse of a dementia victim, they need to understand that the supporting spouse has vows they are trying to live up to and at the same time deal with loss after loss and are in a delicate frame of mind and need to be understood. It is too much for them to understand the needs or desires of the non spouse friend.
I don't have any dogs in this fight, but in thinking about it…It seems to me that it would be very difficult for an Alzheimers spouse to have any time or energy left over for another relationship. I think if I were out in the general population and single, I would be very reluctant to start a relationship with an Alzheimers spouse. They're going to be needy, exhausted, cuckoo, and just generally not the best of dating material.
There are two posters on this forum (known to me) who have contributed regarding their relationships while married to spouses with dementia. Each has posted regularly on many topics since I have been here now more than two and a half years. Without exception, their contributions have been full of compassion, intelligence, perception and wisdom.
Those who entered these posters lives, whenever and however, are fortunate to say the least. The posters don't need my endorsement but I want them to know they have my respect and admiration.
Kasha--my husband had young-onset AD (dx when he was 59, I was 55). After caring for him at home for 6 years, I moved him to a facility. Six months later, when I saw the move was working out, I was mentally ready to start dating. Fortunately, I was fixed up with a wonderful guy and we fell in love. I felt a bit awkward at first being seen with him in public--and believe me, I felt no guilt about dating nor neglected Steve's care in any way--it was just that society's norm is that "married people" don't date others and I'm not one to flaunt the rules! Anyway, that feeling vanished quickly and everyone I know was completely supportive of me.
It seems to me that your guy has worked out a compromise--it's not that he is hiding your relationship, but he's not giving his family full disclosure, either. That may be all he is capable of doing at this point, and you certainly shouldn't put more stress into his life by demanding more. Frankly, I think you should be more concerned with the drinking issue. He needs to find a healthier way to handle the stress--i.e. exercise, doing activities he enjoys, attending a support group, etc. AD can be a long-term illness and he could seriously damage his health if he continues to drink in excess. To me, your role is to help him alleviate stress--your emotional needs must come in second, harsh as that sounds. After his wife passes and he has had time to grieve, then you can ask for more of a commitment. If that's too difficult, perhaps you should rethink the relationship.
I think you both should read Barry Petersen's book "Jan's Story". It is about the same type of situation (EOAD and the well spouse finding another relationship).