- With Mayo Clinic health education outreach coordinator
Angela Lunde
read biographyclose windowBiography of
Angela Lunde
Angela Lunde is a dementia education specialist in the education core of Mayo Clinic's Alzheimer's Disease Research Center at the Abigail Van Buren Alzheimer's Disease Research Clinic in Rochester, Minn.
Angela Lunde
The transfer of information about dementias, as well as understanding the need for participation in clinical trials, is an essential component of the education core.
Angela is a member of the Alzheimer's Association board of directors and co-chair of the annual Minnesota Dementia Conference. She is a member of the Dementia Behavior Assessment and Response Team (D-BART), a multidisciplinary outreach service assisting professional and family caregivers in understanding and managing difficult behaviors often present in dementia. She facilitates several support groups, including Memory Club, an early-stage education and support series, and more recently, helped to develop and now deliver Healthy Action to Benefit Independence and Thinking (HABIT), a 10-day cognitive rehab and wellness program for people with mild cognitive impairment.
Angela takes a personal interest in understanding the complex changes that take place within relationships and among families when dementia is present. She is particularly interested in providing innovative and accessible ways for people with dementia and their families to receive information and participate in valuable programs that promote well-being.
"Amid a devastating disease, there are tools, therapies, programs and ways to cope, and it is vital that families are connected to these resources," she says.
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Alzheimer's blog
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July 12, 2011
Caregiver navigates her way to transforming life
By Angela Lunde
Recently I received a message from a woman I admire deeply whom I'll call Rose. She wrote:
"Two years ago we discovered that Charlie (my husband with dementia) could no longer navigate our canoe. I stormed, stomped and basically had a meltdown when it was apparent that our canoeing was over. I felt robbed.
"Then, our son taught me how to navigate. Charlie, however, no longer felt safe in the canoe. So I decided to get a one-person kayak. In some way, I felt like I was betraying Charlie. I tried to get past that.
"Today, I 'soloed' in my new kayak. Charlie helped me launch it in calm waters tonight. I was scared, but with his encouragement and support, I managed."
Rose writes, as many of you have as well, that caregiving brings with it guilt, anger, loss and even resentment. And her story of the two-person canoe turned solo kayak may be reflective of the way many caregivers experience changes in their life and in their relationship.
The story speaks of Rose letting go of something pleasurable she and Charlie shared. The story exposes the loss of the way things used to be. Charlie may still be there for Rose, yet, in some ways he no longer is.
Moreover though, I think Rose's story is about opportunity.
I believe that Rose has begun to open up to new possibilities and discover qualities about herself not fully recognized until now. Rose is finding joy and meaning in her life in fresh ways and maybe most importantly, giving herself permission to do so.
Like Rose, each of you has the opportunity to transform your loss and discover untapped wells of internal strength and inner resources. Through caregiving you can receive a new awareness of your abilities and a renewed sense of identity. This awareness can build self confidence about the future and about what is possible for you — even infusing a sense of courage.
Often this transformation begins to unfold when caregivers focus on what they can change and begin accepting what they can't. Rose can't change the disease her husband has or the way it alters their partnership. Rose can love Charlie unconditionally and paddle her solo kayak with renewed vision and possibility.
"Some changes look negative on the surface but you will soon realize that space is being created in your life for something new to emerge."
- Eckhart Tolle
37 comments posted
July 14, 2011 11:26 a.m.
I am so confused. I had to take my husband to a adult care center last week after 1 year of agressive progression dementia. I had had about one hour sleep a day for about 3 weeks and he was starting to wonder outside every minute I would turn my head and expose himself while wondering. Yesterday I went to see him after I stayed away for 5 days to get rest and my head straight myself. He was sitting in a chair calm, talked to me, carried on a bit of a conversation. Although he did not remember his daughter taking him out to lunch the prior morning and could not remember so much, he seemed to be like he was a year ago at the beginning of all this. I took him for a ride to eat at our favorite resturant, he seemed at a point that I was wondering if I could really take him home again. He was asking when I was going to take him home, he said he was all over the wondering and exposing himself. What guilt I have even to put him him the place. HE is on a new med. My friends say they are afraid that I will bring him back home, he will start things all over, as he, I know, is only going to get worse with this, never better. He is the youngest there only 69. I am not sure what to do,, If he was like he was when I first had to put him in the facility I would not be so puzzled what to do. Put when he has his GOOD days, and begging to go home, I am so torn. He is not the man at all I knew. But I love him, and I promised that I would always take care of him.
- donna
July 14, 2011 11:23 a.m.
I read Kathryn's post and i remember when i was there emotionally about a years ago on my caregiving journey with my mom... i too asked, "Is this what my life is going to be?" Failed marriage because of the situation, kids off at college, caring for mom 100% of the time, loss of my income and my freedom...Then i started a gratitude journal and wrote 5 things each day that i was grateful for... suddenly i changed... i started to smile more, and say.. This is my Life! i still cry often because of the daily reminder of the mom i am losing... but with Love and Gratitude, i have changed... i am now becomming a stronger person. I remind myself of how my mother was while i was growing up! i know that if she remembered who i was she would be proud of me. We cant change the disease, but how we take care of ourselves and give ourselves permission to feel and change in what we are going through really helps! Hugs to all of you and especially you, Kathryn! You all help me to not feel alone, and this site is on my gratitude list!
- Darla
July 14, 2011 11:15 a.m.
Her story is how I feel. I feel robbed, cheated, etc. My hsb will be going to a memory care facility soon. My life with him is over and I'm very angry about it. I take med's for depression but it doesn't rid the anger. I am only 65 and I our lives, as we planned, will never be. He is still here but I miss him terribly. I miss his companionship and everything that goes with it. I love him so much and watching him slowly leave is overwhelming and heartbreaking. Nothing seems to help me feel any better.
- Linda B.
July 14, 2011 11:09 a.m.
I am happy that Rose can continue on with her life at this point. I am a 75year young female who was widowed to the absolut love of my life. I NEVER thought of remarrying again. However,ten years later I met this widow at church who was from Canada. SOMEHOW I began to feel that God had put him in my life for a very special reason. What I couldn't fathom. I only knew him for two weeks before he had to go back to Canada because of immigration rules. We stayed in contact via phone and in five months he was allowed to come back to the states. We were married the next day.Little did I know about him.( big mistake) He had no insurance that was good here and no insurence would take him because he was turning 65 three months later. I ended up retiring early from my teaching so I could get him on my Social security and medicare. I had to take a penility of 10% because he couldnt sign up himself. Two monthes after that ,he was diagnosed with prostate cancer. He has battled that as well as severe heart problems.Now he was diagnosed with Alzeimers! We have been married ten years and I have reall been his care giver for alll that time.If he gets to the point that he needs care in a home,he will have to go back to Canada because he would have the care he needed under their insurance.We would ,however,have to divorce for that to happen. His doctors all have told me that I an between a rock and a hard place. I keep wondering what God is trying to teach me through all this!!!
- Mary
July 14, 2011 10:41 a.m.
In reading comments, it is interesting to realize that we all experience things differently. For Rose to maintain her kayaking skills and physical strength is admirable, and I can only think that Charlie loves her and wants her to reach her potential. And yet I can see how others desire the "togetherness" as much and as long as possible. Because my Mom is afflicted, I enjoy spending tons of time together and I sometimes panic because I know her time on earth is limited. However, I find I need some time away or I sink into a deep hole emotionally. To stay "upbeat" with her, I need desparately to get aerobic exercise.
- No name given
July 14, 2011 10:37 a.m.
I need help. I read this newsletter regularly and see others going through the same thing as me, but, with one difference. I have been the caregiver for my 53 year old brother for the last three years. I work full-time. I am losing my relationship with the man I love. I am losing precious time with friends, my daughter and my new grandson. I am losing myself. There is no support system or care facilities where I live for Alzheimer's patients who are not seniors. Family say they will help, but I am the only one my brother is comfortable with. I have made my home as safe as possible for my brother, and he has a personal support worker tend to his needs Mon - Fri. for a few hours each day, but when I get home there is a new list to make of things for me to do ... it doesn't stop. The next day I get a couple things off the list, but then there is always more than a couple things added. Is this my life?
- Kathryn
July 14, 2011 10:30 a.m.
I am happy for Rose also, however, if you factor in another full time disease such as a brittle, insulin dependent diabetic, which my husband (of 54 yrs) has...I find that I also feel 'locked' into both of these diseases and I am needed 24/7 for as far into the future as I can see. My grown children help but have their own careers and family and I refuse to transfer my responsibility to them. I would get no pleasure from that. One or two hours at most..maybe once a month. I see no light at the end of the tunnel.
- Maggie
July 14, 2011 10:21 a.m.
My mother has become my father's caregiver and has taken over the finances in our parents very complicated life. She was always a woman of the sixties who paid absolutely no attention to bills, stocks or the rest of their savings. I am so proud of her for taking over the bill paying (on-line!) and even dealing with the rest of the financial decisions. While it has been a slow and arduous process, she has grown stronger and more intelligent in taking it on. We offered to do it, yet she declined. Now I just hope they will move to a more manageable living arrangement and "live" to their fullest capacity.
- Kimberly
July 14, 2011 10:18 a.m.
These stories are more helpful to me than you'll ever know. I can identify with the writers and it makes me feel "normal." Just knowing that others are experiencing the same things that I have experienced with my parents over the past 10 years. The guilt can be debilitating. Bless you
- gailsmith
July 14, 2011 10:10 a.m.
I feel that I must learn to do as Rose has, although it is incredibly difficult, because otherwise this disease is going to rob me of the rest of my life too, and that is not acceptable to me, nor is it what my partner would want, if he were able to see things clearly. I also feel that most of this stuff aimed at caregivers is essentially saying, even if it doesn't mean to, "Your life is over too - sacrifice everything -- career, friends, etc -- to your spouse's illness." That would be fine in an finite situation, say a year or two, but is not what i want to do for all the remaining decade(s)of my time on earth. I want to reinvent my life so that i can continue to have my own work (which is a vocation, not a job) and still be with my partner as long as possible, becuase there is a richness in this caregiving that i also am learning from. However, it does require some very tricky paddling to get the balance right! I think I am starting to see how to do it though......
- Delores
July 12, 2011 10:44 a.m.
I have to agree with Alan, as I read this blog I to was happy for Rose but felt her experiences are the exception to the reality of Spouse caregiving.
- Terry C
July 12, 2011 7:47 a.m.
I have mixed reactions to what 'Rose' chose to do. Making time for oneself to continue to enjoy life while still being a caregiver for one's spouse is very important. 'Rose' should be congratulated for taking the initiative to make a change from a 2 person canoe to a one person kayak so she can continue to enjoy doing an activity by herself that she once enjoyed doing with her husband. As a spouse caregiver, I get that. But as I see activities my wife and I once enjoyed doing together slowly but surely slipping away, right now I prefer to find other activities that we can still enjoy doing together. There will be plenty of time for me to do things by myself as her condition worsens. I guess I'm just not ready for that one person kayak yet. I'd rather put a life preserver on her, or keep looking for ways to get her to feel safe in our two person canoe so we could both get in that canoe together for as long as humanly possible! Every widow or widower must do as 'Rose' has done, switching from a two person canoe to a one person kayak. Sadly, with Alzheimer's, the caregiver spouse often becomes a widow or widower well before actual death. So whereas I feel good for 'Rose' ... that she has found a way to continue an activity she enjoys ... I won't be ready to do that for as long as I can still find activities that my wife and I can enjoy doing together. As her Alzheimer's progresses and that is no longer possible, only then will I be looking for that kayak.
- Allan
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