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    Angela Lunde

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  • Alzheimer's blog

  • Oct. 4, 2011

    Alzheimer's and marriage: Comments stir debate

    By Angela Lunde

63 comments posted

Alzheimer's Caregiving

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Alzheimer's changes the person with the disease. And it changes our relationship to the person with the disease. Many of you have written about the isolation you feel, the sense of losing oneself and the ambiguous loss that's present on this journey.

By ambiguous loss, I'm referring to the difficulty and the anguish of still having the person with you physically, but feeling their psychological (emotional and cognitive) absence.

In a blog comment a couple weeks ago, Linda wrote, "It seems like he is slipping away from me every day. He likes to hug me — but I miss the way that we were so close..."

I have to believe those of you reading this care for your spouse with the love and dignity that Linda does, which further amplifies the pain of ambiguous loss. It's reasonable to imagine that what you grieve most may be the loss of the deep connectedness you once had with that person, and/or the loss of intimacy once shared. As humans, when we have meaningful emotional and physical connections we're healthier and our lives are more fulfilled.

So I pose the question, how does having Alzheimer's affect, or not affect, one's marriage vows?  Both Ginny and Gary offered their thoughts (on this blog) referencing television evangelist Pat Robertson's recent remarks on Alzheimer's and divorce. Let me ask, does one view marriage vows through a different lens in the presence of Alzheimer's? Or, does Alzheimer's underscore the depth and commitment of marriage vows?

As reported in the "New York Times" on Sept. 16, Robertson suggested that a man could divorce his wife with Alzheimer's once she no longer recognized him. Not surprisingly, his comments were controversial to say the least. Yet they do reflect the profound loss of connectedness that husbands, wives, and partners to someone with Alzheimer's feel.

In an AARP Bulletin (aarp.org) article on Sept. 13, 2010, psychologist Dorree Lynn, author of "Sex for Grownups" said, "When the marriage dies long before your spouse does, the result is an avalanche of emotion that can leave a caregiver depressed, depleted and isolated. Reaching out to another person for comfort is the caregiver's way of choosing to live life."

Barry Petersen, a correspondent for CBS News, sees things similarly. He wrote a memoir, "Jan's Story," about his caregiving journey with his wife. The memoir tells of Petersen's decision to enter a relationship with another woman. Petersen explains that he and his lady friend are committed to each other and he acknowledges that she is a full partner in his role as caregiver to Jan. "I am satisfied with what I did. For me, just for me, it's what I needed to do," Petersen said.

But many see things differently. In her blog comment last month, Ginny wrote, "Do we divorce if a spouse gets cancer or other terminal illness?" She then refers to the book "A Promise Kept," by Robertson McQuilkin. McQuilkin resigned as president of a college to care for his wife until her death.

Ginny shared this: "... (a beautiful book) showing how weakness generates strength, servanthood births freedom, and joy is found in a promise kept." And Gary wrote, "Pat Robertson must have ... forgotten his Christian marriage vows — for better or for worse, sickness and health ... till death do us part ... selfish desire blinds us to the best way humanity can live."

Anyone married to someone with Alzheimer's will likely have a reaction to this subject. For me, I'm choosing not to weigh in. Not because I don't have an opinion, but because I'm a proponent of honoring choice. I can't cast stones at people who are doing the best they can or because their choices don't align with my worldview.

The only experience in this life any of us can know completely is our own. And with that truth, I may not always agree or even understand the choices caregivers make on this journey. I don't need to. And still I can choose to offer unconditional support.

"We all live with the objective of being happy; our lives are all different and yet the same." - Anne Frank

63 comments posted

blog index

  • October 2, 2012 8:24 a.m.

    What about when the spouse with AD keeps threatening to leave? My Dad is 85 and the stress it is putting on him when my Mom threatens to divorce him is wearing him out. He is very patient with her, but how long can his heart and body stand up to the stress? He is not well himself. I am here to help care for them both and it also puts me into a sad situation when I hear Mom telling Dad that she is going to leave him or telling me that she hates him.

    - Connie

  • August 9, 2012 2:16 p.m.

    All I can say is I am so weary as a caregiver to my husband after 40 years of a rocky marriage.There is no easy way out of this for him or for me.I know two words Pity for him and Weary for me. He has his regular personiality, with the added AD, and it's not a happy picture. I carry a burden, if you ask him,he'll say he doesn't have AD and all is well. So, I repeat, I am weary!

    - Angie

  • June 1, 2012 6:18 a.m.

    To the author and Pat Robertson, Thank you

    - Beverly

  • May 17, 2012 5:18 p.m.

    My wife is probably in the early AD stage, no diagnosis yet. I have limited assets. A lot of people including elder care lawyers say that I should transfer or take other means to avoid spending everything on her care. I feel a moral responsibility to provide as much care as I can. To me to transfer assets to avoid this is lying. Am I wrong in this? I have a feeling that if I give up my assets, I also give up my option to decide the best care for her...I am thinking of taking care of her as long as possible at home. If I have to place her, I will have some say where until till I run out of funds. Maybe by that time she will not know she is in some awful place on medicaid. The places I have visited that take medicaid patients are terrible.

    - Bill

  • February 17, 2012 6:47 a.m.

    I came close to having to make this kind of decision when my fiance suffered brain and heart damage.In tears I promised to care for him forever. His friend told me not to make such promises. My fiance did die, and looking back I wonder how things would have panned out b/w us. If allowed I believe I would have continued to care for him at the least...even if I'd married someone else. I dont think he would have wanted that.His will did stipulate nothing heroic should be done to keep him alive. I wonder if that also means nothing heroic should be done to keep a relationship going. Sometimes, I thank him for freeing me. He worked too hard had poor eating habits and hardly exercised. I don't know what role his lifestyle(or genetics) played in the development of what killed him --almost suddenly. I used to tell him I do not want him to make me a widow so he has to follow my wellness plan. I think we have to do the best we can to be fit-- for each other's sake. Secondly, we need to sign a prenuptial or "in-nuptial" that states our desires regarding the relationship when one spouse is no longer "mentally married." I will not want to be a burden on anybody. I hate divorce too, bcos God hates it too.I have taken care of people with AD and have noted the toll it takes on their families. One spouse chose separation cos she could not cope..it was second marriage for both of them and two separate sets of children probably with different plans for each of their parent.

    - Queeny

  • February 15, 2012 7:06 a.m.

    my grand pa is suffering from this and granny can not tolerate this they have fights regularly. Some suggested that grandpa and granny needs a vacation and some says they need a separation. but i wish to god that this type of disease should not happen to any one. at least not to humans.

    - shriya

  • December 15, 2011 2:56 p.m.

    How interesting are the comments that a married person whose spouse has Alzheimer's can and should have a 'choice" as to whether to honor the marriage vows. Since when does God's Word have options or choices as to which of His commands we follow? Just look at the disastrous effects of "choice" on abortion, on homosexual unions, on assisted suicide, etc. Man always wants to play God, and do what "seems right" at the moment. I guess people will never get it that the Bible is the only source of absolute truth - period.

    - Dale

  • December 15, 2011 4:01 a.m.

    I have a strong family history of Alzheimers. I'm now in my 50s and feel I am starting to display signs of the disease. Unfortunately my husband is extremely impatient and unkind with me all the time due to my lack of attention and memory loss. My one saving grace is that at least we have enough money that when I get too bad I have the option of a trip to Switzerland to end my days. Not everyone has this option, which is very sad.

    - Julia

  • December 5, 2011 1:20 p.m.

    A friend whose wife has AD and is in a memory care facility is getting a divorce to protect his assets. He will still be there for her, and has no interest in other women, but she will be on Medicaid when she runs out of money. I would like to know how other caregivers feel about this.

    - Betty

  • November 20, 2011 12:18 a.m.

    My mother has dementia and at times she doesn't know me and will tell me " I don't really know you." This hurts but I am adjusting as time goes by. She is not responsible for her inability to remember and most of the time she is pleasant to be around. I cannot say I will never place her in a home because I have no idea what challenges this disease is going to bring, but I will be a faithful daughter. It doesn't matter if she doesn't remember me what matters is I remember her. The same will go with my husband who is much older than I am. I will always care for him regardless of his mental status which I thank the Lord is good so far. I agree with a previous post How does one have time for stepping out on the marriage if they are caring for their loved one properly.

    - Donna

  • November 8, 2011 10:17 a.m.

    I wanted to add to my earlier post. I try to do something fun for him each day - simple games, walks, prayer, going through old photos. I've learned patience. I'm so happy that I have learned how to be a real help-mate to him. For the most part he seems content (rocky times still) and I am at peace. Strange? But not when you realize these conditions will not always be here. I believe that God will soon set things straight and there will no longer be illness on the earth. Jesus taught us the "Lord's Prayer". That kingdom will be what sets thing straight. My joy will be to see my husband as he once was. I wait for that.

    - Norma

  • November 8, 2011 10:11 a.m.

    My husband of 42 years was diagnosed with Alzheimer's 10 years ago. His Father, two brothers and a sister all died with the illness. His Father lived with us until his passing. So, when my husband began to display symptoms ( stopping the car in an intersection to figure out which way he should go) I asked his doctor if we could get him on Donepezil. It does seem to slow down the disease. The first two years were horrible. I had so much to learn. He was so angry and confused. He threatened me with a gun. He called the police on me and wanted me arrested. After a while the medical experts helped with a medical regime that helped to calm him. He never accepted that there was anything wrong with him, but takes the meds without complaint. Life is easier since then. We still have moments of rage and anger - he believes we have over a million dollars in the bank (I WISH). He made me take him to three banks in town to find his money. Embarrassing, yes. When his anger stirs his blood pressure also raises and I am fearful of a stroke or heart attack. He has had heart surgery. So, my challenge is to get him calmed down. He has lived at home all this time and will continue to as long as I am able to care for him. I have family and so many friends that offer to stay with him while I have some time off. He has no objection to me going away for a weekend but "He doesn't need a babysitter". I respect his wishes. I feel he deserves honor and respect - he has been a good husband an

    - Norma

  • November 6, 2011 1:17 p.m.

    As a husband for 60yrs., I cannot emagion ever leaving for any reason. The statment of a so called preacher of the gospel,below, was a shock. We have lived together through the death of her parents, my parents and the loss of one daughter. We have supported each other through it all. How could anyone even think of leaving the one you have grown up with and shared a life. My wife has been in a home with AD nearly 2yrs. and has lost her memory, not able to walk and cannot carry on a conversation, yet I or two of our children see her almost daily. We don't really have a visit, just making sure she is being taken care of properly and is not hurt. Sometimes we can even get her to smile and show her dimples. It is sad to see so many loved ones dumped into a home and forgotten. To those who are considering divorce or shacking up with someone, read Matt, 19th chapter and Galations 5th. chapter, verses 19-21. And I am no preacher!

    - Robert

  • November 5, 2011 7:40 p.m.

    My husband and I have been married for five years. I found out he had AD three months after we were married. His brother had sensed but never let on about it until after we were married.He has declined very fastand is now in a home. My problem is I hate to go visit it just tears me up. I still love him and although I think he knows I'm his wife , it means nothing to him. I feel as dead inside as our marriage is. Where do I go from here?.

    - JoAnne

  • November 4, 2011 10:29 p.m.

    I have been reading these comments for a year now. My partner is in a healthcare home with AD.He is getting very good care @ 229.00 per day, he should!I visit once every two weeks and he still knows me, but seems less interested to see me each time. He begs to come home with me and it breaks my heart the he can't.I told him this week that I would always be here for him and he ask , Why did it end? He gets miced up on his works but I think he knows what he's trying to say.He was always a very active person, very good golfer and is unable to adjust to the new home. I've been told I need to stop visiting, just hurting us both reminding him of what was. Any comments? PS,I have never had a thought of seeing another. My love is for him only.We were together for 26 years.

    - Maria

  • October 26, 2011 5:46 p.m.

    Intimacy is a basic need for healthy adults and when it is compromised by disease of their partners, I believe that each caregiver needs to find a way to fulfill that need. I choose to "love what remains" and broaden my support by sharing all with my sister. It helps me feel less alone. I do not know what the future holds but I know that today I am okay.

    - Rosalie

  • October 26, 2011 10:35 a.m.

    I just discovered this forum. I appreciate the honest comments. My spouse is battling early onset of dementia (4-5 years). I retired early from my teaching to care for her. So far, we are doing OK, but our relationship less about affection and communication, and more about meeting her needs. I can understand how a caregiver would look to another person for support and affection, while still being committed as competent caregiver.

    - Todd

  • October 16, 2011 3:21 p.m.

    I am astonished that any full time caregiver has time or energy for another committment. A nap is as close as I get to joy.

    - Phoebe

  • October 13, 2011 11:21 a.m.

    I'm little late in weighing in, wasn't able to because my mom who was also an Alzheimer's sufferer suffered a stroke was hospital and died two days on the 11th October. I grew up and believed in till death do us part, in sickness and in health, my parents were like that, the only thing that separated them and they had their own troubles, was death, my dad died in 1983, my mom never remarried, I grew up and learnt to assume the role of caregiver as my mom grew older, when diagnosed with Alzheimer, I resigned from work for the last couple of years and stayed home and took care of her. I have never regretted a single moment despite the trials and there were many. I always say to my mom, I'll never leave you and I said this to her the day she died. Please if you need help with your loved one, please ask for it, don't discard them as old news, they don't deserved this.

    - Dalhia

  • October 12, 2011 5:10 p.m.

    Oct.12, 2011 My husband came from a family of five-three have been diagnosed with A.D. He and his brother have passed away. A younger sister remains in a care facility and is completely helpless, knowing no one. My Dear husband was laid to rest in 2003. He actually passed away just hours after our 49th wedding anniversary. This precious man brought so much joy and happiness into my life that I could have never left his side. I was able to care for him until the last three months of his life. He did enjoy day care facility for a short time. I can certainly relate to the "loss" of one you loved so deeply and the loneliness and pain. My heart still aches for him. I know he would have done the same for me. When those "anniversary" dates roll around I tell my children not to focus on what we lost, but on what we had, the most wonderful husband and father any family could have ever asked for! How blessed we were!

    - Jean

  • October 11, 2011 3:34 p.m.

    When I think of all the wonderful years I had (and hopefully have) with my husband, all that he ever did for me, his love, kindness, support of my work, his love for my parents and help in caring for them, his pure goodness and concern for others, how could I "leave" him in his time of need? I never would. What I know for sure is that if it were me with this insidious disease, he would be at my side helping me along the way, without doubt. I respect any person's decision to do what is best for their particular situation - no judgement from me.

    - Elizabeth

  • October 11, 2011 3:27 p.m.

    I CAN'T BELIEVE SOME OF THE COMMENTS I AM READING - LET ME JUST SAY THAT EVERYONE WHO HAS A CONSCIENCE (NOT ALL DO) HAS TO LIVE WITH THEIR CONSCIENCE AND THEIR CHOICES.........WE ALL KNOW ABOUT CHOICES.........JUST DON'T CALL ME WHEN YOUR WORLD COLLAPSES...........

    - Constancia P.

  • October 11, 2011 11:19 a.m.

    Quoting from your website: " For me, I'm choosing not to weigh in. Not because I don't have an opinion, but because I'm a proponent of honoring choice. I can't cast stones at people who are doing the best they can or because their choices don't align with my worldview." This attitude is called "fence-sitting".

    - Kaye

  • October 10, 2011 8:28 p.m.

    We all seem to be struggling to love through caregiving. My partner and I are still married and living together, because I forgive because of the illness. However, the terrible tirades on Sunday, followed by Monday's appology when I retell about Sunday, and then Tuesday the horrible name calling again, and off to the pub, followed by Thursday asking for forgiveness once I explain why I am upset as he has forgotten. This pattern has been going on for months. I know I will always provide caregiving to my husband, but I don't know if we will still be living together.

    - grace

  • October 10, 2011 5:37 p.m.

    When is a person not a person? It seems as though we are saying, "when they lose their minds." It is okay to have a stroke and have difficulty moving and speaking. It is okay to be paralyzed from the neck down. It is okay to have emphasema and walk around with oxygen. But if you don't recognize me ay more, I can opt out of my responsibility to be a faithful partner. Why not develop friendships with people of the same sex. Go golfing with your buddies. Or shopping. We need to grow up as people in America and not have to please ourselves first. where is sacrifice? Where is loyalty? Where is compassion? If I am more important to myself than my marriage partner, then I am the one with dementia, not my partner. v4amnq

    - Carolyn

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