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    Angela Lunde

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  • Alzheimer's blog

  • June 1, 2011

    Letting go of the past lifts a weight from caregivers

    By Angela Lunde

53 comments posted

Alzheimer's Caregiving

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Thank you for all your ideas about ways to address shadowing. There's nothing more helpful to caregivers than to have a "toolbox" full of strategies to assist with the challenging symptoms of Alzheimer's. Your comments underscore the deep commitment and love you have toward the one you're caring for.

Yet one of you recently asked, "What happens if the caregiver and the dementia patient do not have a loving relationship? How do both cope to live together?" This is an intriguing question and maybe a situation more common than we realize.

Symptoms of dementia such as suspiciousness, false accusations, paranoid delusions and aggression will put even the most loving and committed relationships under considerable strain.

So what happens when the relationship between caregiver and the person with dementia doesn't originate from a loving foundation? Certainly, the type of relationship we had in the past with the person impacts how we think about caregiving in the present.

In one of my favorite books, "Your Name is Hughes Hannibal Shanks", Lela Knox Shanks writes eloquently and candidly about her relationship and caregiving role with her husband, Hughes.

Although Lela loved him deeply and unconditionally, her idea of reframing the relationship with the Alzheimer's patient may be helpful. Lela writes, "The caregiver cannot retain the same familiar relationship with the patient as in the past — we now have to live with the patient as she or he is today and a new relationship must be formed. Carrying the emotions of our past relationship into the present only dissipates our energy and weighs us down."

Here's an example:

A couple weeks ago, Nick wrote that his wife of 46 years with Alzheimer's throws his clothes away. She believes he's having an affair and that his clothes are from the other woman. If Nick were to get angry and react to her accusations, he'd be allowing his wife, a person with a disease that destroys rational thinking and judgment, to determine his mood.

Reframing (rethinking) his relationship can help Nick accept that her dementia is speaking these accusatory words, not her. This releases Nick from interpreting what his wife says as a personal attack on him.

Another book, "A Dignified Life; the Best Friends Approach to Alzheimer's Care: a Guide for Family Caregivers," by Virginia Bell and David Troxel, describes how caregivers can form new, maybe even better relationships.

It tells the story of a son who had a troublesome relationship with his father since childhood. Yet today, the son cares for his father full time and says they've never been closer. The father has forgotten much of his past his relationship with his son. The son has realized that he, too, can make the choice to let go of the past. Of course, the son never imagined he would be taking care of his father, a man whom he disliked for much of his life, but, "What's past is past," says the son.

When we learn to reframe a long standing loving relationship, or one with a troubled past, we're given an opportunity to let go of that which no longer serves us - most often, our negative thoughts. As a result, we may just find that we are more compassionate and accepting in our caring for others, and for ourselves.

"He who is devoid of the power to forgive is devoid of the power to love."

— the Rev. Dr. Martin Luther King Jr. (1929-1968)

53 comments posted

blog index

  • March 6, 2013 7:57 a.m.

    I have taken my Mother in my home to care for her in the last stages of Alzheimers. She is the sweetest, most loving human being, it will be the hardest thing I have ever done to lose her. When my brother and I were young, my father was violent toward Mom. I laid in bed many nights listening to her crying, things crashing and her begging him to stop. One horrible day, my brother and I watched as he knocked her down and pointed a shot gun to her head. I pray to God she suffers no pain.

    - Janet

  • September 17, 2011 3:05 p.m.

    My husband for nearly 59 years is doing well physically, but I fear the disease is getting ahead of me. We just moved from our carefully planned and built "retirement home" in which Ken declared he would only leave "feet first." We are among the many who live out their final years in "Assisted Living." The family has worked so hard both in packing up and calling in the movers. Now they are on the unpacking end. So much togetherness has opened their eyes to the reality of their Dad's condition. It has also opened my eyes to the depth of their love for him. I look at him, then I look at them and I think my heart will break. I am trying to redefine who I am. The man who has always taken care of me is gone. Now I am the caregiver and I'm not sure I know how to play this role.I will read and write in this blog as life unfolds in this new place, with these new people. He isn't Ken and I can't be Marian anymore. I hope I can be a stronger me. No more playing Little Girl Lost. - Marian

    - Marian

  • July 28, 2011 12:27 p.m.

    Then there's letting go of the future, too. Life is lived in the present and the present is all I can count on. Sometimes I find myself thinking what my lofe will be like when I am no longer caring for my husband who has Alzheimer's Disease and many other physical ailments due to a lifetime of diabetes-related complications. When I find myself slipping into that kind of thinking, I try to return to the present. Today is all I can count on. Whether it's a good day or not, I know I am better off not wishing away the present.

    - Jo-Ann

  • July 27, 2011 11:04 a.m.

    im so worried about my mum i know she is very depressed and think she is in early signs of alzheimer she is gone very angry and bitter she also repeats herself a lot and is getting very forgetful she wont let us take her to a doctor please help ps she also wont admit she is depressed

    - michelle

  • July 22, 2011 9:03 a.m.

    -Jo, It was alomost as if I was reading my own life with my mother. I am 1 of 2 siblings (sis was murdered in 2010) so I am her only care giver. When I go to see her it is almost as if she is a child. I don't harbor any ill will toward her anymore because in her own way she did the best she knew how to with my sis and I. Right now she needs me and I wouldn't want to be anywhere else. I know you will have a great peace in your heart knowing that you were there. God Bless You !

    - Jude

  • June 27, 2011 7:38 p.m.

    My mom has very recently decided my dad her 24/7 caregiver is an imposter. How do we deal with the constant questions as to where her husband is? Do we continue to tell her he is right there with her even though she clearly will never believe that? It seems disingenuous to agree that he is gone and we don't know where he is. She is tormented that he is gone. Help?

    - Pam

  • June 16, 2011 12:07 p.m.

    Rene- Many current Alzheimer care facilities are a far cry from the "convalescent home" your father suffered. Please consider that even the strongest individual could be overwhelmed by your caring for two! Please, never forget that you too are due some life. Look into county help agencies for respite care options, a day facility for mom, or even the home of another family member or living facility. In the end, you will be carrying on the life your siblings could not, and you do deserve a chance to regather as you ponder how you wish to honor your family without losing yourself.

    - Jenna

  • June 16, 2011 9:16 a.m.

    May GOD bless each and everyone of you who are willing to give up your lives so others can live.

    - Mona

  • June 16, 2011 4:10 a.m.

    BUT HOW DO YOU MOVE ON FROM A RELATIONSHIP OR A PERSON THAT YOU LOVED MORE THAN LIFE ITSELF??? I CARED FOR SOMEONE THAT MEANT THE WORLD TO ME, WE HAD THE BEST OF TIMES TOGETHER. HE WAS OLDER THAN I AND WHEN HE BECAME ILL, I TOOK CARE OF HIM. I CARED FOR HIM FOR EIGHT YEARS AND HAVE SINCE GOTTEN MARRIED. IT HAS BEEN SIX YEARS NOW AND EVEN THOUGH I AM MARRIED, THIS MAN STILL HOLDS A PLACE IN MY HEART THAT I JUST CAN'T ERASE. I STILL HAVE ALL HIS THINGS, HIS ASHES, EVERYTHING! AFTER SIX LONG YEARS, HOW DO I MOVE ON AND LET GO???

    - SHARON

  • June 15, 2011 6:42 p.m.

    The disease manifests itself so many ways caregivers have to adapt in multiple ways. Caring for my mother we actually became closer but it occurred after feelings of complete hopelessness and watching such a rapid decline. I searched and found a specialized Alzheimer unit which allowed mom to be involved 24 hours a day, activities, activities and activities. It had a chapel where she attended Mass every day when she could. She improved and declined at the same time. Out of this 2 things still stick you have to separate the person from the disease and in the earlier stages my mom seemed to be pushing all my buttons like a caricature. so separating the disease from the person is critical. there was always that irony that with the tragedy of the illness it also resulted in a bons we never had.

    - Peter

  • June 15, 2011 9:18 a.m.

    Throughout my childhood and much of my adult life,my relationship with my mother was quite strained.She suffered fron untreated depression. There were years of pain and therapy on my part.This may seem awful to anyone who reads this, but I believe the best and happiest years of her life were the 5 she had after being "diagnosed." During the early stages she began taking several meds.One was for depression which I believe she was unaware of.In a short amount of time she became a much happier person,the cruelty and abusiveness gone.Yes,she had the disease, but she became a pleasure to be around.A joy to visit.I will be honest that I will always remember the abuse and sadness I endured, but while caring - then visiting her,I looked at her-the way she was one day with this horrible disease,and I just gave it all up.The feeling that gave me had more power than she could ever have had over me, any counseling session,or magic pill could possibly have.The last week of her life was just so very sad.I, one of her 4 children who she had felt was always a failure,w ho never did anything right, never left her side. The others came and went-making excuses for not being able to deal with it-their choice.For the first time I felt close to her and that I finally understood her.Some may think of all those lost years where if her depression had been treated,our relationship could have been much better. My feelings are that in the end she gave me the gift of forgiveness that will conti

    - _Jo

  • June 13, 2011 3:29 p.m.

    A new book out, "We Have Your Husband," by Jayne Garcia Valseca tells the story of her husband's kidnapping in Mexico and the unforgiveness she had over that, and then she found out she was in stage 4 breast cancer. She went to the Cancer Centers of America and while there, with a licensed medical counselor, she worked through her numerous issues of unforgiveness and she ended up beating cancer (unlike so many others). You can watch her story at the 700 club (CBN.com) where I saw it just last week. Just type in her name for a search and it will come up.

    - sandra

  • June 13, 2011 11:39 a.m.

    My husband and I have been married for 48 years, he was the love of my life. I say "was" because he's no longer the person I married except once in awhile he looks at me the way he used but more than likely he'll look at me with that awful look in his eyes that tells me it's not going to be a good day. I sure do miss the man I married.

    - Marsha

  • June 10, 2011 8:14 p.m.

    Oh, being a Alzheimer's caregiver is THE hardest job anyone can imagine. I just didn't understand Ina's question. holding on to hurt from anyone only adds to stress. Survival of this caregiver depends the ability to let go, forgive and stay in the day. To much to handle....way to much to handle to do otherwise.

    - Terry

  • June 10, 2011 2:09 p.m.

    Being a caregiver is very difficult.

    - Alex

  • June 10, 2011 1:40 p.m.

    Ina, question what is holding on to hurt increasing my caregivers stress?

    - Terry

  • June 10, 2011 9:03 a.m.

    Good points about dealing with today and now rather than memories and yesterday. Forgiveness truly is one of the most powerful actions we can take. And freely forgiving can significantly decrease caregiver stress. Is Holding On To Hurt Increasing My Caregiver Stress?

    - Ina

  • June 10, 2011 7:04 a.m.

    Oh Amy thats your key, You wake up feeling blessed that he is still alive. Learn the best way you can to stay in the day. The future is unknown for all of us, with or without Alzheimers. Our lives are staying in the moment and embrace that day, and if your lucky enough for it to be a good day, that becomes the best. And if it's a bad day .....well it's over and let it go (easier said than done I know) All I know is that I can't stop or fix this progression of cruelty.......but I will try my darnest not to let what's left and good be rob from me. For me I don't look ahead ......wouldn't get out of bed if I did. So I stay in today because that's where I am :)

    - Terry

  • June 9, 2011 11:29 p.m.

    The most difficult part is knowing that its not going to get better.I cannot stand the thought of my Dad not being able to remember who I am one day.It truly breaks my heart in two.I wake up feeling blessed that he is alive.I fear the unknown future.

    - Amy

  • June 7, 2011 10:26 a.m.

    Wow, these comments are all over the place. Insightful, heartbreaking and complex. Alzheimer victims are a team. The victim and it's caretaker. And my heart breaks for those not driven by love but commentment to what's the "right thing to do".....oh my that's even a harder road to say the least. We (caregivers) live in the moment and the situation. We have an exhaustive task before us but we are human and it's hard not to want the person we first fell in love with raised our children with, our friend and lover. As this disease progress we learn that hard fact that's not to be and I for one am sad for us. But we live in the moment and we handle, react and care for these victims of an ugly dreaded disease. Good days or bad they are our days. And truly only those that walk it can understand it. I applaud us all because we do .....

    - Terry

  • June 6, 2011 2:12 p.m.

    Arlie: Apparently she knows you as a loving and kind person and responds to that. How fortunate you are! So many respond in the opposite way to loving spouses. I am sure you are very familiar to her and you really can't ask for anything more.

    - shirley

  • June 6, 2011 12:25 p.m.

    Fortunately my wife< an Alzheimer patient for sixteen years, has been constantly loving and kind. It has helped me develop what would be called an "agape love" for her although I wonder if she even knows or recognizes me any longer.

    - Arlie

  • June 5, 2011 11:27 p.m.

    I need some input or suggestions of how to handle moving. My husband doesn't want to get rid of old stuff in the garage that is of no use and it a pretty big amont of stuff that is not going to fit in the moving truck. He is done well about having to move until this point. I don't think he can handle this.

    - Bea

  • June 5, 2011 5:35 p.m.

    How good wa this article!?

    - Cecily

  • June 4, 2011 9:31 p.m.

    Jane: Please go on the website www.alzheimerspouse.com and you will get good advice. Remember you are not alone in all this. There are meds dr. can prescribe to keep your husband's anger levels manageable. Just remember they can't reason anymore so there is no point in disagreeing. You will have to learn other ways of communicating. Good Luck.

    - shirley

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