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    Angela Lunde

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  • Alzheimer's blog

  • Oct. 18, 2011

    Changing the way you look at things eases caregiver stress

    By Angela Lunde

54 comments posted

Alzheimer's Caregiving

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Thanks to each of you for reflecting and offering comments on the sensitive issue of Alzheimer's and divorce. I think Allan captured the essence of what most of you expressed. "This is such a highly personal matter ... one size cannot possibly fit all ... be careful not to judge too harshly whatever decisions a caregiver spouse makes," he said.

Whether you see things the way John does or not, his words were eloquent: "That I might take a companion, even as a lover maybe, in no way lessens or impugns the devotion and commitment I feel to her (my wife with Alzheimer's) ... Indeed, it represents a cherished endorsement of our treasured years together that I should think so highly of our companionable relationship that I might want another."

And Tom wrote, "... my wife ... is still in early stages ... I have asked her how she would feel if a relationship with someone else were to happen if and when she no longer knows who I am. She knows that I ask the question with full intention to continue to love her deeply, to stay engaged with her, and to provide for all of her needs. Understanding all of that, she has encouraged me to be open to that possibility. I don't honestly know how I feel about it ... I only know that I am glad we had this conversation."

Tom offers a powerful message about the importance of having (even tough) conversations with those we love and care for while there is still time. In addition, it's a reminder that each of us still has the opportunity to have our wishes understood around living and dying.

No matter where each of us sits on this issue, someone we love is both here and gone. The relationship has changed and will never return to the way it was. This is that ambiguous loss I mentioned in the last blog.

In a book titled "Loving Someone Who Has Dementia," author Pauline Boss, Ph.D., writes, "When there's no cure to an illness or condition, the only window for hope is to become more comfortable with ambiguity and a less than perfect relationship." She goes on to speak about how rigid thinking blocks our ability to cope. In other words, when we think we ought to do it this way, or we should feel this and not that, or there is a right and wrong choice to make, we experience excess stress.

Dr. Boss provides caregivers a way of thinking that can help reduce stress. She offers a dualistic view that encompasses a "both — and" way of thinking. Here are some examples:

  • She is both gone and still here.
  • I take care of both him and myself.
  • I am both a caregiver and a person with my own needs.
  • I both wish it was over and wish my loved one keeps on living.
  • I am both sad about my lost hopes and dreams and happy about some new hopes and dreams.

Life as I see it is full of situations that lack a clear solution or a right answer. And with dementia when the losses are ambiguous and the decisions left to caregivers have unclear or less than ideal outcomes, the process can be heart wrenching. A way to lessen stress may come when a caregiver can balance two competing ways of thinking — I am a loving spouse (and caregiver) and need time apart from my husband. The ability to replace absolute ways of seeing things with a tolerance for ambiguity (yes, it may be incredibly challenging) opens up new possibilities for hope, contentment and possibly joy.

Back to Tom's blog comment about having a discussion with his wife in the early stages of AD. He offers a reminder to all of us about the value of having our wishes understood as best we can. There are several tools available that can assist in having these conversations.

A precious gift we can offer those who love us is a better understanding of our own values, likes and dislikes, medical choices and spiritual beliefs. Two sites that can help are: www.honoringchoices.org and www.agingwithdignity.org/five-wishes.php.

"If you change the way you look at things, the things you look at change."

- Dr. Wayne Dyer

54 comments posted

blog index

  • August 28, 2012 1:08 p.m.

    Thanks a bunch. You have opened a line of thought that is new to me. Don't know yet if I agree, but the thought of a loss of a great lifetime relationship is devastating Thanks a bunch. You have opened a line of thought that is new to me. Don't know yet if I agree, but the thought of a loss of a great lifetime relationship is so devastating~! For me, this blog is great in illustrating the dilemma I would face. Thanks

    - keith

  • August 26, 2012 5:51 a.m.

    No one can generalise in such matters.While some people are able to do without another partner,some cannot.

    - sanjit

  • August 25, 2012 6:27 p.m.

    Ella, Thanx for taking the time. We have an appointment with a gerontologist but it is not until September 27. My husband is 78 and just had a colonostomy. But HE had made the decision as his AD is not that advanced yet and I couldn't deny what the surgeon suggested, although I would not have opted for one myself. I find it difficult to make decisions for someone else. There needs to be more support groups for caregivers - as I didn't even realize I was being ever so slowly drawn in.

    - Dee

  • August 24, 2012 3:53 p.m.

    Jane: I share your feelings though I could not express them so eloquently. I no longer have what I once had with my husband, but what I have is enough.

    - Ana

  • August 24, 2012 12:02 a.m.

    Spouses who care for their spouses with AD have need and wants, too. Unfortunately, a life is put on hold when a spouse becomes a carer for the spouse afflicted with AD. When before there were two minds discussing, working on and deciding about things in their daily lives, there is only one person now to decide and attend to ALL of these things, aside from being the carer for the spouse with AD. AD is not a "routine" health problem, it has pleasant and not-so pleasant days, to put it mildly. And the carer is faced with these challenges everyday. Yes, I definitely agree, a change of reaction to the situation will make the life of an AD carer less stressful.

    - Paola

  • August 23, 2012 10:27 p.m.

    When couples marry they vow to take life as it comes together. The definition of infidelity is not altered if one's spouse has Alzheimer's Disease. I agree with Margaret that the idea of asking a spouse with AD for permission to look for a "replacement" is offensive. I long for the sexual relationship I once had with with my husband but believe discarding him for another because Alzheimer's Disease robbed him of virtually everything including his sexuality is plainly immoral.

    - Linda

  • August 23, 2012 9:40 p.m.

    Dee: I recently read an article about what treatments doctors undertake for themselves. They do not believe in heroic last ditch measures -- for themselves. I would keep that in mind when deciding on their recommendations for their patients. For the first 9 years, when my husband was mobile, I took him for all the tests and procedures and our days were spent in doctors' offices and hospital labs which exhausted both of us. Looking back I realize how unnecessary much of this was -- for instance, suggesting he get eyelid lifts which would have meant problems with his blood thinner! So I questioned the need and luckily we did not do that. (Count at least 4 appointments and long travel time and waits for consultations). Seven years later, his lids are just fine. Now that he has been bedridden for at least 3 years, he simply cannot do the rounds of specialists and the rest of that stuff, yet he is comfortable, relaxed, pleasant, on minimal medication and, bless his heart, at 86, his life goes on probably as well as if he had continued the endless appointments. And frankly, I would not have lasted. This is one of the reasons caregivers often do not outlive their less healthy spouses. However, I didn't have decisions to make concerning cancer. That must be very hard for you. Second opinion with a gerontologist or someone who treats the whole patient?

    - Ella

  • August 23, 2012 7:21 p.m.

    We have been married 50 years now and have worked very hard on our relationship all that time. Now six years into AD I can be sure that I would not want to miss this part of the journey together. The early years of AD were taxing and difficult, but I still feel the connection between us that goes way beyond words. Looks, touches, gazing out the window stroking my husband's arm while I watch a hummingbird in the garden. We share with each other every day. I know from his hugs and crooning that he loves me and knows me even though he cannot talk or do anything that we used to do together. It is enough for now just to be with him. We have had our time together. My life will change if he goes before I do, but I would miss out on the felt intensity of our love if I scattered that energy around. I get out and have help caring for him. But I don't "want it all" now. I want the sometimes exhausting closeness of our last years together. There is a mystical, spiritual essence that I would not trade for anything.

    - Jane

  • August 23, 2012 6:57 p.m.

    I am new to this and taking it all in. I hope I can cope because I get angry at the new responsibilities involved in running a house (that needs repairs). I do go to excercise, book groups and volunteer. But I also resent having to leave the house so much. My husband also has cancer and I wonder why the doctors keep coming up with treatments, such as that debilitating chemo, when he is running into depression/dementia anyway.

    - Dee

  • August 23, 2012 6:25 p.m.

    Perhaps "one size doesn't fit all," but my wife needs me now more than ever. I could not shave in the morning, look at my face in the mirror, and have any respect for someone who was prepared to walk away from her. It's not always easy but walking away is not an option.

    - Don

  • August 23, 2012 6:07 p.m.

    Kirsteen: Been there done that!! Didn't work out at all!! My husband has AD & I brought my Mom in to live with us because she was in beginning stages of dimentia. She became so difficult & demandig that I rebelled & my poor sweet man paid the price. I was so exhausted trying to please her & when I FINALLY realized that loving her was never going to be enough, I honored her wishes & moved her back into her own house. My sweet husband of 50 plus years has calmed considerably. My emotions w/my Mother reflected immediately upon him & it took me over a year to recognize it. My Son stays w/my Mom & I am mostly free to take care of my husband exclusively. It was so hard to be happy around my husband when I was dealing w/anger & frustration trying to please my Mom. My husband will ALWAYS now be first & should have been from the get-go. I thought I was wonder woman...what a shock when I found out I wasn't!!!

    - BARBARA

  • August 23, 2012 5:36 p.m.

    I cannot imagine having the emotional energy, let alone the time to find a new companion at the same time I am caring for my husband. My love and emotions are centered on him and I feel one relationship at a time is all I want, need and can summon up. Juggling a boyfriend in the mix? If my husband were no longer at home but cared for in a nursing home, maybe,maybe that would be enough of a compartmentalization to free me of the intense feelings I now have and need in order to be his attentive and loving wife. I've seen others -- mostly men (we can speculate why) manage this but their spouses are not at home. For me it's not a matter of vows or religion; it's a matter of only one intense emotional tie at a time. As a woman I can say that my female friends have been wonderful in their support. Perhaps men haven't cultivated male buddies -- so they must look more quickly for women offering warmth and exclusive companionship. The lopsided ratio certainly helps them find someone more easily. But I'm not making moral judgements on this solution to the problem of loneliness. Just saying Hooray for my golden female friends who go with me to the movies, lunch, short shopping excursions and Hooray for bridge and intellectual activities that I schedule every week.

    - Ella

  • August 23, 2012 5:07 p.m.

    I could never even consider divorcing my wife of 47 years. She made me what I am. I am sticking with her out of love, appreciation, and respect.

    - Rodney

  • August 23, 2012 3:35 p.m.

    The vow taken states "until death due us part" not a disease.

    - Jill

  • August 23, 2012 3:16 p.m.

    I find the concept of having a conversation with a person about their 'replacement' - a future companion for when they are 'gone'...absolutely repugnant and most offensive, disrespectful, and selfish. And I am sorry to read this in this newsletter. It's not helpful.

    - Margaret

  • August 23, 2012 1:15 p.m.

    I have enjoyed receiving this weekly newsletter. I agree that everybody's situation is differant and personal. After taking care of my Mom for 5 years and still doing it. I do not judge anyone. I am happy for any assistance and the free time that my siblings make sure I have. I look forward to many more newsletters. I met a great bunch of folks at our neighbood coffee shop and I stop in there everyday after work for a visit and a laugh before I go home to begin my night with Mom. What a difference it has made.

    - mary

  • August 23, 2012 1:03 p.m.

    My Mom moved in about 4 years ago, I always knew this was a stepping stone in between living alone and long term care. This past year has been the most difficult, I miss her terribly. She lives here but it's not her. I feel so guilty for going out or wanting to spend alone time with my husband and daughters. She is not pleasant to spend time with anymore, just angry and difficult. This disease is so incredibly painful for all involved. I truly believe that the love of our family is slowing her decline but as the article suggests, we must also live our own lives. Is there some secret to removing my feelings of guilt?

    - Kirsteen

  • August 23, 2012 12:37 p.m.

    While reading a book last week I came upon a statement that applies to my role as a caregiver as well as everyother relationship I have. My new mantra is..."Being able to see the path is not the same as walking it." sometimes I know what I should do for my husband but am just too exhausted to do it at that moment. When others who don't really have a clue make absurd statements & suggestions to me, this helps me accept their words more gently. Try it out...it does help change the way you think.

    - Marty

  • August 23, 2012 12:36 p.m.

    My spous of 44 years is in mid stage of Alzheimers with a companion in two days a week and just this month - adult day care two days a week. I found a wonderful discussion group at the Library offered when I had time to myself and I loved having real conversations with individuals I'd never met before who were intelligent and interesting. I spoke to the gorup after several weeks how much they meant to me because I no longer had a spouse who could converse. The next week one may in the group suggested he'd like someone to take a walk with after the class to unwind and I realized I'd been maybe sending a signal I was seeking a male companion. I told him I couldn't that week but would the next and we did for awhile until it rained. He emailed me could we get together again. I thought a lot and said sure, why didn't he come to the house to ostensibly drop something off and we three would go to the beach and then my spouse would go back to the house when his companion came. My new friend engaged my spouse , or tried to , in a bit of conversation. It went fine and I was comfortable. But I'm ready to have the conversation with my spouse of how he feels if I do have a relationship with another man once he no longer recognizes me.

    - Angie

  • August 23, 2012 12:03 p.m.

    Don't agree that one should have a conversation with spouse in early stages of Alzheimer's regarding whether to develop another relationship when the disease progresses. Why raise the issue when it will most likely make the affected person feel bad or, it the affected person prohibits a relationship, the well person will feel guilty. When and whether to have a news relationship is yet another decision that the well person has to make to preserve a life for herself.

    - Betsy

  • August 23, 2012 11:54 a.m.

    This wonderful post touched me deeply as i too struggle to live in the ambiguity, and the deep loss of our life, and to replace that with a different kind of love and caring. (Wanting this to be over, and wanting it to never end) We are very lucky that our love is strong, but i sure miss my companion. I am learning to stop tormenting myself and him by not trying to talk about things the way we used to - (or just giving up?) It is too frustrating for both of us, but even more lonely.... Thank you again - I will keep this column.

    - Delores

  • November 26, 2011 11:14 p.m.

    what happens if you do not have the hard conversations with your love one is that you can never say that you talked to them and they said it would be ok to love again or love someone else. when this happens you are not quite sure of the answer they would have given you. just be sure you talk to them in the loving way that they are accustomed to and you will be much happier later.

    - Patsy

  • October 30, 2011 5:40 p.m.

    I've been married to my best friend, and I miss the relationship we used to have, but I am thankful what we did have when we had it. I can't believe we are ending up this way, he is 54 years old, and is now in a Nursing Home, I miss the normal things we used to do, I greive a new loss everyday.

    - Jane

  • October 29, 2011 9:07 p.m.

    I think this "both" "and" way of viewing things is a really good way of looking at the sometimes seemingly contradictory feelings that I experience. I know that there is worse to come and I know I will have to cope with it all when it comes. But I try to stay focused on where we are now and what we are dealing with now.

    - Sue

  • October 27, 2011 10:57 a.m.

    For those of us fortunate enough to have been in a wonderful, fairy tale loving marriage where our AD spouse has always been our best friend/soul mate/lover/spouse and co-parent of our children, an AD spouse declining in front of our eyes is absolutely horrible. And unless someone else is or has been in a similar situation, I think it is impossible for such people to even imagine how horrible that is. However, for someone who has been in such a marriage there is also tremendous depth of love that can still exist while my AD spouse continues to fade in front of my eyes. Yes, the sadness/frustration/stress that exists every single day can be very hard to deal with ... even on the best of days. Yet, somehow the feeling of helping to make this journey as easy as possible for my wife is also nourishing to my soul as I try to remain patient each time I answer the same question, remind her where things are in the house, etc. So, yes, one must accept the reality but one can also choose how to deal with that reality. I say to myself and every single day ... it is what it is.

    - Allan

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