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    Angela Lunde

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  • Alzheimer's blog

  • Nov. 13, 2012

    Caregiver label doesn't define you, but helps recognize what you do

    By Angela Lunde

27 comments posted

Alzheimer's Caregiving

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Last week I reconnected with a lovely couple I met a while back, Nick and Marie. It's apparent they've been in a caring relationship with one another for many, many years. Yet, when their doctor recently addressed Marie as caregiver (Nick is living with early stage Alzheimer's), Marie was a bit rattled, stating, "I'm a wife."

So I wondered, when does the label caregiver replace wife? If your husband or wife receives a diagnosis of Alzheimer's, do you (the spouse) leave the doctor's office with a new label, title and role? When do spouses label themselves as caregiver?

To a great degree we rely on labels to define ourselves. Labels connect us to our identity and self-worth: I'm a wife, I'm a husband, I'm a father, I'm a daughter, I'm an artist, I'm a manager, I'm a vegetarian. Often these labels don't necessarily reflect who we are as much as what we do, what our social status is, or how we function in life.

In a society that puts so much emphasis on the desire to be something, each of us grapples with figuring out exactly who we are in relation to our world. Importantly, the language or words we use to describe ourselves largely influences the way we think. And the way we think drives our emotions, our expectations and our behaviors.

In the case of Marie, instead of "being" a caregiver, she chooses to see herself as a wife in a caring or supportive role. Perhaps then caregiving or caregiver is a verb and not a definition — one that describes your relationship to other people, not who you are nor your relationship with yourself.

The ability to see ourselves beyond our jobs, roles, labels and titles and as the real, genuine substance of who we are is defined as the authentic self. It's who you are at your absolute core, not defined by anything external. Authentic self is all of the things that are uniquely yours and need expression.

For those in a caregiving role, faced with never-ending tasks, a sense of true self is often diluted and quite possibly something that gets lost early on. The path to authentic self may be somewhere between who you are and the one you are caring for.

Maybe it's the "golden mean" (Aristotle anyone?) between the extremes of selfish and selfless — the balance that rises out of compassion and loving care, and ends well before neglecting your own needs. It's an inner sense that you matter, that you deserve to be healthy and whole just as much as the person you're caring for.

I think many of you would agree that you don't want caregiving to define who you are. However, identifying yourself in a caregiving role as Marie does is a good for you. By identifying yourself in a caregiving role or as a caregiver you begin to pay attention to information, resources and services that can help you.

Most importantly, you become part of a large group of a people with common issues, needs and concerns. You begin to build recognition not of who you are, but of what you do.

When we name and label a role that we have, we validate our experiences and can nurture our feelings. We say to the world: Here I am, acknowledge me, hear me, support me, I matter.

Today you are You,
that is truer than true.
There is no one alive
who is Youer than You.--Dr. Seuss

27 comments posted

blog index

  • January 11, 2013 4:05 a.m.

    to Donna: it seems like a thing from the internet. First you must search in this way. The next is, your father is in inside speaking. He has a problem, not in jet time, in the memory time. And he need a psychologic therapie. I am a caregiver for a long time. I wrote a book: Rediscover Recovery.

    - Susanngab

  • November 23, 2012 9:10 a.m.

    My husband talks to someone when he is sleeping and actually carries on a conversation. He is always plesent and says Thank You. Usually happens early in the morning and I haven't heard him during the nite or during the day when he sleeps. I am curious what this means.

    - Donna

  • November 22, 2012 4:46 p.m.

    Marie: I feel you are so correct in saying God is preparing us for losing our best friend. My husband has had Altzheimers for 12 years now and I don't know when the journey will end but I feel I am being prepared for the end. I will miss my husband forever but know he is on loan to me at this point. It is a horrible disease and just pray it will end peacefully.

    - Donna

  • November 20, 2012 4:10 p.m.

    So many of the letters I have read in these responses is as if they came from me. The letter from Char is just as I feel. Because of this dreaded disease my husband has, God is allowing me to get use to being without him. Thank you Angela for giving me a way to express my feelings.

    - Marie

  • November 18, 2012 1:44 p.m.

    I started by being depressed; I cried easily and threw things around into smithereens. That did not last too long and then I resigned to the fact that my husband is slowly deteriorating, and that I will loose him bit by bit. I threw myself into ignoring a lot of "funny" behaviour, sudden mood changes,putting things away in not too easy findable places, making rude phonecalls to relatives who do not understand. I ignore it all now and concentrate on a daily routine of making delicious meals, organizing some pleasant things, looking for comedy on TV that makes us both laugh , some light entertainment outside the home, answering his (to anyone else) "idiot" questions, with only a yes or no, rather than going into a lengthy discussion which he does not follow anyway, giving him small tasks to do (sometimes it works, sometimes he can't remember to carry it out), stopping him from making futile trips or doing senseless things, an above all, incorporating a health program for myself (de-stressing and gym), and going to meetings with friends. No, it's not an easy journey, and I certainly was not prepared for it. I am not trained as a nurse, nor as a social convener, I am well in my eighties and not too quickly moving around anymore either, I lean on my optimistic true self (make lemonade if you're handed lemons...)and oin my survival instinct. I talk about it all freely to old and new friends alike. I just hope I can bring it to a dignified end!

    - Peggy

  • November 17, 2012 3:17 a.m.

    Mary, I am so sorry that you don't have "you" any more since you became a widow. I am so close to my husband of 50 years & dread even thinking how this horrible disease has stolen so much from him & that I must face losing him to "it". I so hope & pray that I can be strong & face the inevitable because as I see it "there is no "me" without "him". I pray for Angela & all her devoted "fans" daily. See, now you all have another title!!!

    - Barbara

  • November 16, 2012 1:21 p.m.

    This was a great article, we get so many e mails from people who do not even know that they are Caregivers, they find themselves thrusted into the role of being a Caregiver before they know it, and don't or didn't even have time to think about what being a Caregiver really is and what it entails. (Obviously these are people who are new to Caregiving) We find so many people have the wrong idea about what being a caregiver is, especially when it come time to face the fact that they are a Caregiver to an Alzheimer's patient. For some silly reason there is still a cogitation to the word Alzheimer's, like it is something to be ashamed of. We need to get over the fact that having Alzheimer's is something to be ashamed of. It is NOT something to be ashamed of, we still have a lot of work to do in this area and stop the stigma that having Alzheimer's is somehow worse than having cancer or some other type of disease. No matter how you look at yourself, weather you think of yourself as a Caregiver, wife, mother, Daughter, or son, you are a person who qualifies as what we would consider to be a Caregiver, this word should not carry any more stigma than the word Alzheimer's. If you are a Caregiver, give yourself the respect that you deserve, because the word Caregiver is something to be proud of, not everyone can do this job we call Caregiving. You are champions in our eyes. Joe Lucido Alzheimer's Research Association www.alzra.org

    - Joe

  • November 15, 2012 11:17 p.m.

    I WAS a wife, a mother,and a caregiver among other titles....and now I am a widow after ten long years of caring for my husband who suffered with Alzheimers. Char said it best; I agree wih her totally. I had no life, I had no husband, no lover, no companion....but now I don't even have "me".....A big part of me is gone and I feel so lost and empty. We were married for almost fifty-seven years! I did my very best at being a wife , a mother and a caregiver...It doesn't matter what name you give it. Now,I am a widow! He is gone and he's not coming back....I miss him so.....

    - Mary

  • November 15, 2012 9:22 p.m.

    Thanks for all of the comments from Angela's Team. I feel all of them and agree with the feelings after 10 years of "caregiving" because of an acute stroke plus severe back pain of my wonderful husband. Somehow when I turned 65 this year, I felt there's not much time left for me, I'd lost me...also, my focus was only on him... I'm falling apart. Priorities are different, I'll never do what I so wanted to do in my life before but that at times it doesn't even seem important. Now I see my role as my husband's advocate. He laughs when he says to others "she's the boss", and to me he says "You are the wife and secretary" . Also, we are the "ENTERTAINMENT" so we have the responsibility to make all happen! He is still stronger emotionally, and wants to live so much that I have to continue being his advocate. But I feel no advocate for me outside of my doctors, and medical staff, and my sister who lives out of town. ADVOCATE...guess, the caregiving roll has been so overwhelming to me, but advocate is what I have done, and demanded high value health care for him, and I'm getting better. I must say I do really miss his cognitive skills, motivation, and all he was when I feel in love with him and he probably feels where did my "blond young chic go?" And, I miss my being "me" and the strong spirit I had, but it comes out sometimes, and then there's no stopping it when I hear music! What supports the you to com

    - KRISTINA

  • November 15, 2012 7:24 p.m.

    For a few years now I have been referring to my new role as care partner. My husband seems to like this and after grace before dinner he will frequently add" and teamwork". But asked to join Linkin I did say ( at age 70) Caregiver as my job.

    - Genie

  • November 15, 2012 6:21 p.m.

    I agree with Char and Betty. I am a caregiver because I am a wife, but I have lost the man who was my partner and best friend to dementia. I don't feel much like a wife anymore. I became a dementia caregiver when I quit my nursing (RN) job to stay at home with him full-time. I was a caregiver when I was working, too. So I feel ok with being labeled "caregiver". Bonnie

    - No name given

  • November 15, 2012 6:13 p.m.

    I became a caregiver when I became the older sister rather than the daughter that I am in reality. One sometimes has to deal with how things are now.

    - Diane

  • November 15, 2012 5:10 p.m.

    Pete and I were married 46 years this past October. Six of them have us on a new journey of Alzheimers. He may not remember that I am his wife at times, but those 40 years that he did ... well that's what I remember. He has been a loving and supportive husband and father and now it is our turn to try and be the same to him. I will always be his Bride and he my Groom! He still has his wonderful sense of humor that drew me to him. God's grace will be sufficient to see this journey to its end.

    - Carol

  • November 15, 2012 4:35 p.m.

    ANGELA, I JUST WANT TO THANK YOU FOR ALL THE INFO, YOU PROVIDE,YOU ARE DOING A BEATIFUL WORK FOR US IN NEED, HAPPY THANKS GIVING.

    - ALFREDO

  • November 15, 2012 3:17 p.m.

    It will vary with each person and with each stage and with whether there are hired care givers who clearly can be called that. This is one "naming" that we get to treat according to our own perceptions. When you are caring for a baby and are its mother, you seldom would choose to identify yourself as "caregiver." But your husband can be as helpless as a baby, complete with diapers and tippy-cup. Up to you, are you his wife or caregiver or temporarily both?

    - Ella

  • November 15, 2012 2:34 p.m.

    I don't think you replace the role of wife with that of caregiver.....you add the role of caregiver to that of wife, daughter, mother, etc. It's another "hat" you put on. To say I am my husband's or Mother's caregiver does not totally say who I am to them. To say I am his wife, her daughter, AND a caregiver is more correct. And just because a wife is no longer able to enjoy her role as wife the way she used to, does not change the fact that she IS his wife and has a history with this man that no one else has.

    - Marchelle

  • November 15, 2012 1:27 p.m.

    My husband has Alzheimers. You and Dr Seuss are a great team. Reading your words I had the same experience as Char. It has taken a while for me to be at peace with our new and changing reality and relationship. Self knowledge and self care coupled with relationships with family, friends , and other "caregivers" enriches my life and my relationship with my my husband.

    - Sue

  • November 15, 2012 1:13 p.m.

    I look forward to my Newsletter and do read all the comments. They help and let me know that I am not alone; my husband has had alzheimers for 5 years. We live in an assisted living community, in our own apartment, so I do have other social stimulation and CAN leave him alone in our apartment for a few hours; with as note in his hand as to where I am. The activities that we do are, of course, limited. I am still restricted in some ways. The part that I am having trouble with is: When do you let go? I do not think I can.

    - Mary Ann

  • November 15, 2012 12:48 p.m.

    Char: It's amazing! Your posting made me feel as though the thoughts I have been thinking for a while had somehow floated out of my head and magically appeared in print on the screen! Yes, it's as though I wrote every line. You have said it all perfectly and I don't need to add one word. Thank you for posting -- it's a huge comfort to know that someone else is on the exact same page that I'm on!

    - Fran

  • November 15, 2012 12:37 p.m.

    I so agree with Betty about feeling alone when we are unable to share our good or bad news with our spouse.

    - Joan

  • November 15, 2012 12:33 p.m.

    I no longer feel as a "wife", but all caregiver. No longer do I have someone to share my joy and sorrows with or someone to ask an opinion of and share in my perplexities. I am not free to come and go at will any longer and sometimes I am physically and emotionally exhausted. Support groups are fine in that you receive ideas in ways to care for the new person you are with. They are a place to vent and help to see the good. However, it doesn't replace the long lonely days and evenings when conversation were at the top of the list. Now it is as if caring for a toddler all over again. The temper tantrums, the lack of comprehension of what you are saying, the lack of self reliance...always right on your shirttail waiting to be entertained. This is all done with love and a slow detachment occuring. Is this God's way of helping you to let go? I believe so. I will continue to caregive for as long as I am able; but I feel at some point before it is over, I will have a stronger need to be me again and not a caregiver. I am hoping the guilt won't be overwhelming at that point and God's work will allow me to let go gently.

    - Char

  • November 15, 2012 11:57 a.m.

    I think that when a husband and wife are in a loving relationship and one spouse is diagnosed with Alzheimer's, it is hard for the other spouse to simply remain a loving husband or wife without also being a loving caregiver. I see myself as a spouse caregiver because my wife's Alzheimer's now defines us, dictating what we can and cannot do together as husband and wife. I love my wife and I am proud to be referred to as a spouse caregiver.

    - Allan

  • November 15, 2012 11:55 a.m.

    Angela, I love your views, it makes my day. Thanks. Sumner

    - Sumner

  • November 15, 2012 11:48 a.m.

    I believe that my only role with my husband at this point in his life with Alzheimer's is caregiver. Recently I had a breast biopsy which caused me fear and concern for both of us. I could not share my fear with him. when I received good news, I could not share my joy with him,and I realized anew that our husband/wife relationship no longer exists in his mind , and I felt so alone.

    - Betty

  • November 15, 2012 11:36 a.m.

    I am made up of many things, including being a caregiver. I have been since in highschool helping to take care of my grandmother. I took care of my aunt suffering from ovarian cancer and am now taking care of my precious mother, suffering from Alzheimer's. I take pride, comfort and worth in knowing that I am diligent, unwavering and loyal to my mom, doing those things she can no longer do for herself - as many of you are and do. Thats what caregiving is. Just remember that that's not all you are put on this earth to do.

    - Lynn

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