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  • With Mayo Clinic health education outreach coordinator

    Angela Lunde

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  • Alzheimer's blog

  • May 30, 2012

    Human connectedness is a lifeline for Alzheimer's caregivers

    By Angela Lunde

30 comments posted

Alzheimer's Caregiving

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Recently, I was once again engaged with persons having memory loss and their support partners. They were participating in Mayo Clinic's 54-hour HABIT (Healthy Actions to Benefit Independence and Thinking) program.

A striking feature of spending significant time with people in a life altering situation is how much there is to learn and to grow from the experience.

Olivia Ames Hoblitzelle, in her book 'Ten Thousand Joys, Ten Thousand Sorrows", wrote: "If one holds even remotely, the possibility that our lives unfold in some innate order, then we are here to learn, work through, and hopefully transform the difficulties that come our way."

The folks coming to HABIT attend with an eagerness to get the answers, learn the right way to do things, and fix the problems with which they come. They arrive with anticipation and hope. The program trains specific skills that take advantage of the fact that procedural memory is preserved in persons with mild memory loss.

And because transferring a new skill to a habit takes time, participants practice and repeat the use of a new tool. This tool becomes a sort of surrogate memory in their daily life. Support partners are involved as well, recognizing that they will need to reinforce the new skills once the program is over.

Yet as the days go by, participants often realize that it may be the more intangible aspects of the program that are most challenging, unsettling, and possibly transforming. In an intense 2-week program, there's no escaping the changes that have occurred in the person they love with cognitive impairment.

For the support partners (or caregivers), it may be the first time they are truly confronted by the reality of the situation. Until now, it may have been easy to put aside the subtle changes and hold tightly to a sense of normalcy, for this is how we cope.

The intangibles that I speak of are really about being on a journey of grief and loss — perhaps moving from denial to acceptance for the first time. I say first time because caregivers move in and out of denial throughout the caregiving journey. And with this shift comes disbelief and distress, followed by periods of anger and frustration; emotions that are likely concealing grief.

Each support partner or caregiver will have his or her own way of dealing with what is occurring, but for many, opening up to this grief can be daunting. I believe what is often at the core of caregiver grief is letting go of the person they once knew — the ambiguous loss of having the person physically there, but in the deeper sense feeling a profound vacancy.

Caregivers in HABIT, as certainly all caregivers over time, come to recognize there are no perfect solutions; clear answers rarely exist and there's no fix. This reality can be frightening. But when it's acknowledged, more lessons emerge. Some caregivers learn to see the good in ambiguity, or at least tolerate ambiguity.

They begin to find contentment in good-enough-for-now solutions and believe they're doing the best they can. Many caregivers learn to let go of what they cannot control with less guilt about not being able to make things better. They can find value and a renewed connection in a less than perfect relationship.

Over time, some caregivers discover how to live more fully in the moment more often, rather than in the past or future. Caregivers learn that there can be more comfort in facing fear and anxiety and sadness, rather than denying these emotions. For many, they learn that in challenging times human connectedness is their lifeline, and that meaning and hope are most easily found in the company of others.

30 comments posted

blog index

  • July 27, 2012 9:23 a.m.

    What to do now for the caregiver once the Alzheimer patient has died? My brother feels disconnected from the siblings of his spouse now that she has died. They seem to be finished with him and no longer care to stay connected. Is this normal?

    - mary

  • June 29, 2012 8:42 p.m.

    My prayers are with each and every one of you. I wondered if I should post a comment because my situation is somewhat deifferent in that it is not my mate like many of you whom are suffering the loss of the love of your partner of soooo many years. God bless your love. My name is Linda. I care for my dad. He is 90 years old. He is legally blind and cannot hear but now he has been suffering dimentia for 2 years. He lives with me. I have 2 siblings and pretty much that is all I can say. My daughters help me but they are getting very burned out. I lost my job of 10 years 1 1/2 years ago and went back to school to get my teaching degree. It was not an option. I would not be able to support myself if I started another job at minimum wage. I go to school when I send him to a place that cares for him 2days a week and my daughter helps me the other 2days. I come home from school and continue caring for my dad. I cannot send him to a nursing home. I promised him and my mom (died 2001 with supra nuclear palsy)that I would care for him. I am trying very hard to stay above everthing. Sometimes I cry at night because my heart hurts so much for my dad. I want to make his life more fruitful and worth living. I do not know how. I have searched for ways and end up at a dead end. He loves people but because of his vision and hearing he keeps to himself and just sleeps. I sit with him when I am not cooking etc., I want more for him. I just need guidance, ideas and advice

    - Linda

  • June 26, 2012 4:33 p.m.

    I was curious if any of you have found any apps for your iPhone/iPad to help manage the care of a close family member living with Alzheimer's? With the new capabilities of smartphones, I thought there must be something to help my family out, but I haven't been able to find anything.

    - Daryl

  • June 9, 2012 12:56 p.m.

    I'm a Gerontologist with a 93 year-old Dad who suffers from vascular dementia. I wrote this blog post to acquaint people with what good Alzheimer's and dementia care is like. http://www.agingbeatsthealternative.com/what-does-good-alzheimers-care-look-like/

    - Lorie

  • June 7, 2012 9:27 a.m.

    Does anybody find that it is incredibly difficult whilst coping with the caring end of things, physical and mental, for a parent, if a lone sibling takes an attitude that you are looking for trouble and that the parent could pay for the care in a home or in their home,as if it is as good for a person with severe dementia but with very good recognition of faces to be in an institutional home

    - Maura

  • June 4, 2012 5:54 p.m.

    Thank you Susan for the suggestion of a white board, I am not sure what it is but I will find one for Lee to use. I asked his doctor what he will do to help when Lee hits the anger stage I grew up in a violent home and cannot deal with extreme anger/violence. So he is ex-military and that is where he will be placed when the time comes. There are some things a caregiver cannot do and should feel no guilt about the solution chosen. It certainly affects marriages. Blessing's to you and your loved one's Susan. Barbara

    - Barbara

  • June 4, 2012 12:48 p.m.

    Sorry,end of previous post. Never stop looking forward,look back only at the memories.

    - Catherine

  • June 4, 2012 12:33 p.m.

    My husband and I were one of the couples Blessed to attend HABIT last November.It was in the midst of my diagnosis of MCI in July of 2010.For over one year of "living in the dark with it" the denial,and frustration.It seems we feel more comfortable "in the dark", nothing to confront that way, it seemed easier I guess, like it was going to "go away" I took a suggestion from one of my sisters, "go to Mayo Clinic," so I looked up Mayo Clinic, and found Clinical Trials. HABIT happened, and everything Angela speaks of was there, most all of our truths, and answers. We found counseling, great diet, yoga, my husband got support, we came to (I especially) a point of awareness we did not have, a realization that "Our lives had changed forever",and I say "our lives" because I watch him struggle everyday with my changes,as slow as they are, or as little as they are. We were taught stress relief, great brain information,they helped us to realize "to Plan for the worst, but Hope for the best". We continue to plan for the summer and then hope for the fall, I know what this is my father passed after 9 years with it, but we pray everyday, maybe we will be given one year. Thank you Angela and HABIT for bringing us out of the dark,(as hard as that was to confront) and I pray, that everyone who is affected by this demon can have faith and trust in their care partners, and their partners. Never stop looking forward,look back,

    - Catherine

  • June 4, 2012 10:58 a.m.

    Barbara, my husband has Parkinson's related dementia - he was diagnosed with Parkinson's around 12 years ago. The dementia started 2 years ago. You might want to get a White Board to remind him of appointments, other things he needs to do. My husband has gotten a lot worse in the last few months. He is now going to an adult day care facility so that I can work, but is very rebellious about it. He doesn't think he needs to be there, and he resents the loss of freedom. This has damaged our marriage, and I grieve for the loss of the man I married. He is angry because I am too controlling, and I am worried because he is on his own on the days he refuses to go to the Center. My heart is breaking. Susan

    - Susan

  • June 3, 2012 9:01 p.m.

    Sally, I feel for you. I have been taking care of my Mom for 8 years, full time. I have gotten to the point where this "new person" is Mom. When I think of my Mom before this disease is when I really miss her too!! I completely understand you missing your husband! I lost my brother 3 years ago...I had been taking care of him..he had congestive heart failure...after we got him better from that, he died suddenly of a brain aneurysm..he was just 43. Even though my Mom can't really say much or see me , sometimes she does and says "hi darlin"...makes my day. So, Im sorry for you to lose your husband...we know that having the one we love near us, even in a reduced state is better than not at all. One day at a time from here...lots of tears...and that's okay!! People say things because they are trying so hard to make you feel better. Like a quick fix. There is no quick fix when you lose a loved one. Be patient with them...and with yourself and bless you for taking care of your husband.

    - Antoinette

  • June 3, 2012 7:02 p.m.

    Hi-My husband has been diagnosed with Brain Atrophy-1 year now.Some of th symptoms of Alzheimers are similar to Brain Atrophy. I would like to know if there is a newsletter for his disease. I know there is no cure and no medication's to help. He tried the alzheimer's drug and was violently ill. It is also linked to Parkinson's disease. That is how we found out what my husband had. He was walking on his toes. What do I have to look out for to help care for him? He is still ok for now. Forgetful/memory are his first signs.Thank you for any help sent to me. I would also like to hear from other wives who dealt with this disease.

    - Barbara

  • June 2, 2012 3:38 a.m.

    Dealing continually with a disease can drain a caregiver of energy.A way to deal with one's anger at one's situation is through the practice of 'rage reduction'-ie. daring to express one's anger and other strong emotions through beating a pillow or slicing the air with one's fists.After doing this,one can return to one's caregiving function.Otherwise,the caregiver can become depressed.

    - sanjit

  • June 1, 2012 1:14 p.m.

    For Sally, I am sorry for your loss, I don't know you, but I can understand your heartbreak, and because of that, I feel the connection. The loses come so fast, you can't keep up with them, you are still greiving the loss of 2 months ago, let alone the current situation. I will say a prayer for you that you will be comforted during this time. Thank you Tom on your thoughts on greiving deeper, you worded it very well. If I get stuck in my depression of my situation, I need to look deeper to see if something needs to be "let go of". Thank you for that insight. As I read the comments, I thank you all for your vulnerbility, I can learn from each of you. God Bless You All.

    - Jane

  • June 1, 2012 12:54 p.m.

    Lord Jesus, help us all the troubled and the caregivers alike...

    - JOEK

  • June 1, 2012 10:01 a.m.

    My husband died one month ago and I miss him so much. He was in the mid-stages of Alzheimer's, but died unexpectedly at home of heart failure. After 8+ years of caring for him at home and working, I had just retired to become a full-time caregiver. Now he's gone. I was so focused on being a caregiver that I'd forgotten what he was like before he started down the road with Alzheimer's. But now I remember and I'm grieving the loss of what we had together even though I was losing more of him every day. People tell me it's a blessing and I should feel relieved to have him go this way, but he was still my husband and I miss him.

    - Sally

  • June 1, 2012 8:25 a.m.

    I agree with you Angela that denial continues on throughout the course of this disease. My wife Julie was diagnosed 2 years ago at the age of 57. As losses continue, I handle some with no problem. Then, about once a year I seem to hit a spot where I get depressed out of proportion to the loss. I have learned that those moments require me to go deeper in my grief and loss until it is clear that something else - much deeper than the surface loss I see in Julie, needs to be "let go". Last fall my wife started confabulating for the first time. It took 2 months of prayerful consideration before I could name the deeper loss I was grieving. This was the first time in our married life when I could not talk to her about something significant that was affecting our relationship. She is unaware she confabulates and talking to her about it is not helpful. I suddenly realized that I was now becoming more of her caregiver and less her husband. That up to that point, we have been on this Alzheimer's journey together and having similar experiences. And now, we were no longer having the same experience. That she is dying and I can't go with her. Once I was able to name that loss, my depression lifted. I fully expect to have more experiences like that. I think denial and acceptance is ongoing throughout this disease.

    - Tom

  • May 31, 2012 11:26 p.m.

    Hi & thank you all for your very helpful comments, stories, and tips. Thank you also, of course, for the article. My husband is 61 and I am 47. He was diagnosed just a year & 1/2 ago. A mental health hospital administrator, he took early retirement at 56, thank God so very much! We were able to travel to Peru and have our foreign exchange daughter & family treat us to incredible & wonderous time there! We were having so much relational difficulty during & after the trip we sought divorce. I will forever be grateful we found out that the core problem was /is this disease. Still married and just 12 years of marriage June 10, I still struggle to follow wise advice like getting power of attorney. Since he seems to live in denial, it is so easy to procrastinate. Thank you for encouraging me to move forward in grace AND realities in this process.

    - Jenny Richards

  • May 31, 2012 10:41 p.m.

    I can go back in my mind to 10 years when I noticed some things he would forget, but let it pass, then when he had a doctor's appointment he told them he couldn't remember things but they passed it off as we all forget. Yes, he know my name and tells me how much he likes living here and that I take such good care of him, and he asks for treats as I purchase oat bars etc for him, good and healthy. He is loving and kind, he says please and thank you, tell me he has to go to the toilet. And when we are dressing I compliment him on doing a good job. The Scripture I rely on more and more is Phil 4:19 But my God shall supply all you need according to his riches in glory by Christ Jesus. Yes my needs are many to be kind, patient, loving, helpful etc, sometimes I fail and tell him and God I am sorry. Usually when I have to repeat and repeat and he still doesn't understand. Praise God for a loving family that helps me as I don't drive so they take us wherever we need to go. Some days I miss just going window shopping but know I can't. While I grocery shop they sit with him outside the Manager's office and he has instructed the Bakery to give him 2 chocolate chip cookies, his favorite. All at Church are so kind to him and talk to him and he dearly loves the children, yes I tell the parents what is wrong so they will understand and if we run into a problem of him being friendly with a child at the store I immediately tell the parents so they won't worry. He is 84. I 79 soon.

    - Dorothy

  • May 31, 2012 8:49 p.m.

    I've never added remarks before, but this article and the previous comments led me to do this. My husband, age 55, was diagnosed with Alzheimer's three years ago tomorrow. We knew that something was not right several years before, but couldn't pinpoint the problem. This disease has changed our lives and dreams for the future. I have to work as he is no longer able to work. We sold our home and I am trying to seek employment in another city so we can move to be near our children and new granddaughter. I know that God has a plan for our lives and all will work out. It is becoming increasingly difficult to explain and reexplain our plans while trying to be patient. He still functions well, and tries to be a part of all decisions, but all these variable situations are confusing and leaves me drained. It is good to know that I am not the only one experiencing these same issues and feelings. I have committed to do my best for him at any expense. He is the only man I have truly loved. We will celebrate 36 years of marriage this summer. I plan to find the "joy" in each day and focus on the positive and what we can do - not what we can't. Thank you for sharing your stories.

    - Debbie

  • May 31, 2012 8:05 p.m.

    There is a must read book called One Thousand Gifts by Ann Voskamp. I checked it out from the library and it has changed my life. It does not pertain to the Alziemer's situation specifically, but everyone will find it pertains to themselves and their life. A new aquaintance told me after talking to her about my mom that I MUST READ THIS BOOK. I think you should too. God Bless!

    - Connie

  • May 31, 2012 4:30 p.m.

    I too have lost the dream of retiring and growing old with my husband Jim who was diagnosied at 58. I was fortunate with being able to retire early and take care of him, but the dreams we had of traveling together and spending our winters in Fla or Arizona are gone. He has had this awful disease going on 12 years. He still functions pretty well and knows my name but does not know I'm his wife. Some days are better then others depending on his mood but I'm lucky because he is still the sweet, sensitive, caring man I married 35 years ago, even if he doesn't know who I am. I just pray that I can take care of him and be as good to him as I believe he would be to me if the roles were reversed. Jim is now 70 and I just turned 62 and my memories are just that-my memories not his. I know this is not our plan but God's so I try to accept it even though it is very hard! My advice would be to hang in there and know you are not alone.

    - Barbara

  • May 31, 2012 4:21 p.m.

    I solved the medication problem with a MED-Q pillbox. It flashes and beeps and makes foregttting or double dosing impssible. It works great for my Mom

    - Lee

  • May 31, 2012 4:04 p.m.

    I can relate with Jane and Pat of losing the dream of the retirement years. My husband will be 63 next week -he was diagnosied at 57. He went from being a Criminal Investigator with the Sheriff Dept.to someone I have to led by the hand to get in to the doctor's office. Our dreams were torn away- and our day to day life changed. My oldest daughter and her 17 year son moved in with us so she could be with my husband during the day while I work. I love her , but Andy and I have been alone - just us for so long- I had to adjust to her being there all the time, as well as the drama that goes on between her and my 17 year old grandson. Altho my husband has changed so much- I still love him deeply-we may no longer have the sexual part of loving, but the light in his eyes when I come home from work makes me love him even more. I know he will never be the same but I live day to day- dealing with him - whatever he needs. I will be 62 in December and have deceided to retire and spend just as much time with him as possible. I know our time together will come to an end sooner that I would like it to. But I will love him and provide for him just as long as I can. I have come to know I can't "FIX" what is wrong and try not to worry about things that hasn't happen and to live day by day. I have to maintain a positive outlook for him- I want him to be happy as much as possible - I keep telling him as long as we have each other - nothing else matters.

    - Linda

  • May 31, 2012 3:04 p.m.

    Your comments are always helpful . I need those reminders. One of my rules for living is "Enjoy and celebrate the NOW now." I've written it several places where I am sure to see it thru out the day. Of course I still revert to wishing my husband could be like he use to be, and have my moments of feeling anxious about the future, but I know we can also have joy and appreciate most moments.

    - Sue

  • May 31, 2012 2:20 p.m.

    My grief comes out in the form of anger most of the time. My husband revisits past memories over and over weekly, daily,and sometimes several times of day. But this mornings conversation is totally lost. Consequently I repeat the morning conversation. This irritates me and my voice shows it. He listens to the 3rd rendition like it's all new information. I'm still working as it is necessary. Time is precious and to waste it on this rehash is tough.

    - Bev

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