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  • Alzheimer's blog

  • Nov. 20, 2008

    Let caregivers feel what they feel

    By Angela Lunde

25 comments posted

Anne Simpson is a wife and now a caregiver for her husband, Bob.  Several years ago, I read a book the two of them had written together called "Through the Wilderness of Alzheimer's Disease." The book captured the viewpoint of Anne and Bob as individuals facing a diagnosis of Alzheimer's disease, as well as their journey as a couple.

Recently, I received a copy of Anne's latest book. The book is a collection of poems written by Anne over a period of probably close to a decade. The poems are poignant, sometimes unsettling, yet beautiful. One poem in particular struck me and I reread it several times before I went on to the next. Here's the poem called "Someday" from Anne Simpson's book "Growing Down: Poems for an Alzheimer's Patient" (Calyx Press Duluth) with my reflection below.

Someday —
Maybe someday soon —
I shall wake up with hope,
ready to get up and move on.

But not today.
So don't tell me that
the sun is warm,
the breeze scented with lilac.
Don't recount my blessings
or remind me to be thankful.

Someday —
maybe someday soon —
I will share your laughter,
tell stories and remember my beloved
as he was.

But today
I'll sit with him and hold his hand,
listen to the shallow, ragged breathing,
watch for life to flicker in sightless eyes,
and wait for a flare of recognition.

As I reflected upon this poem, I took from it a message about what caregivers might need from us, their family, friends, and support networks. Contrary to what we often think and do, caregivers may not always need our words of encouragement, praise, pep talks, or best attempts to brighten their day; it is not our job to talk them out of their feelings. Instead, caregivers may need our support, maybe even permission, to simply feel what they feel; which can one day be deep pain or loneliness and the next day hope and gratitude. When we accept and validate caregivers in this way, we can be part of their healing.

25 comments posted

blog index

  • October 4, 2009 4:51 a.m.

    I am a caregiver working in a resthome/nursing home. We work with residents with dementia on a daily basis and every day is challenging but unlike carer who look after their loved ones at home, we can leave the facility at the end of each shift. I congratulate those who do choose to care for the family members at home as I know how much effort goes into caring for someone with dementia/alz. Many countries have their own support systems in place for helping people with the responsibility of caring for people with this disease and carers definitely need plenty of support. Our facility also caters for respite care which is invaluable for those carers needing a break. Caregivers need to take care of themselves too and many people don't realise just how tiring it is to look after people with dementia. Fortunately my husband is a caregiver too, so he understands what is involved.

    - Jo

  • May 2, 2009 9:28 p.m.

    what invaluable insights and advice! My friends husband has been gripped by this terrible disease, and once upon a time, i was a home health aide specifically for the care of alzheimer patients, she has turned to me for help and undertstanding. it has been over 20 years and i wanted to refresh myself on this disease. the failure to let the caregiver grieve is one of the most commen mistakes friends and families make. the technology today isn't what it was then, and i would have forgotten that i don't have to keep her busy and entertained, i just have to be there for her to let her know that her emotions are valid.

    - friend of a caregiver

  • April 11, 2009 7:41 p.m.

    I have been a professional carer and cared for my mum with early onset Alzhiemers, I keep a blog as it's the only place I can really express how devastating this disease is. No one understands unless they've been a carer. People mean well, but those 'cheer up' comments do a lot of damage and only isolate carers even more

    - Elanor@dairyofacarer

  • March 25, 2009 10:58 p.m.

    I hope this does not sound shallow and stupid. I am a caregiver for people who have alzheimer's, though the people I care for are not family. It is my desire to help all I can. I have seen how hard it is on family members and I wish I could be there for all of you. Go ahead and grieve, it is a sad and awful thing to have to deal with. I wish I could be there for all of you. Please know that I pray for those of you going through this. You are not alone.

    - dschubert

  • February 8, 2009 2:53 p.m.

    Everyone deals with the pain of alz differently, and no one seems to deal with it perfectly at any point. We need to quit beating each other up that someone didn't do enough here or there in some way, like we have in my family. Often, the folks with the day to day contact have been hit the worst emotionally and that's important to remember.

    - Snowday

  • February 4, 2009 9:57 a.m.

    I am a caregiver for my mother-in-law of 33 years. She is 88 and in the end stages of alzheimers. Her husband, our father passed away a month ago. They were married for over 54 years. She does not remember his passing, the funeral or any thing that passed 5 minutes ago. She asked all day long for him. She cries every time we explain his passing. We have pictures of him when he was in the nursing home and does not remember. He also had dementia due to CHP. It seems that she is at a stage where he was just one year ago. I have cared for them in my home for almost two years ago. I took them in when thier son, my husband of 33 years was stationed in Iraq for a year. Not only taking care of them but my three children and a grandson during that time. Caregiving takes a terrible toll especially when the caregive is in ill health to begin with. I never knew how much it would take to be there 24/7. I am at a point where my doctors are telling me to get help. or put mom in a home. I am torn but I have my kids 12 and 14 who need me also. Im sorry to say but sometimes I hate to get up in the morning and can't wait for her to go to bed at night and then she is up two or three times in the night wandering the house. We monitor her with a baby monitor in her room. It is really wearing me down. Any ideas? I love her and do care But just wish it were over and she was at peace. Connie

    - No name given

  • February 1, 2009 7:03 p.m.

    A friend of mine who i have been helping for 4 years, has alzheimers and now her family decided to put her in a nursing home. the nursing home has quit all her medications. She has been on namanda 10mg. razadyne16mg. and seroquel 100mg. for almost 2 years now. she has not spoken a complete sentence in 3 years. the seroquel was given because she had gotten so angry at her caregivers and hit them and threw things at them. what will happen now that she is off of her medications.

    - sandy mcdonald

  • December 30, 2008 11:36 a.m.

    Heidi, this web-site is helpful for information on FTD. http://www.ftd-picks.org/

    - Angela

  • December 30, 2008 11:33 a.m.

    Richard, thank you for your honest and sincere words, we ALL need companionship or we wouldn’t be human.

    - Angela

  • December 16, 2008 10:08 p.m.

    Don't know how my comments got so screwed up, but my computer kept switching stuff around! I trust that readers will get the gist of my posting.

    - Richard

  • December 16, 2008 10:02 p.m.

    Not to offend females by my comments, but I believe that spousal care giving is somewhat more difficult if the care giver is the husband. I think that most men are not natural care givers. Fortunately, my mother taught me how to cook a few things, and do household chores, otherwise, I would be useless as a care giver! However as my wife's disease progressed, the care giving became more than I could handle and maintain my own health! As I became physically ill I realized that I needed help,and,after some time, found care givers to help. Since they are not full time,I do care giving several hours a week. My wife unlike many other Alz patients, exhibits few Alz behaviors. In fact, she is very compliant! I am not comfortable putting her in a care facility, at least until she fails to recognize me. I am dedicated to care for her until the end. However, being a typical male, I crave female companionship. I haven't been able to share my social life for the past few years. Under the circumstances, I'm unsure of my options. I really have a need for a companion. to support her. However, I do understand that she will eventually pass away. Further, I just celebrated my 75th birthday. Franky, I can't bear thought of being alone for the rest of my life and believe I may be emotionally divorced. I am considering seeking fem

    - Richard

  • December 12, 2008 7:26 p.m.

    Hi, I am looking to find information on the progression of FTD. A sort of, "what to expect" guide Anyone have any suggestions? Thank you

    - Heidi

  • December 11, 2008 7:34 p.m.

    I don't have anyone with Alzheimers but I do care for my 30 year old multi-handicapped daughter 24/7, she also has a seizure disorder. Wow, I could really identify with this! Somedays we do just need to feel the way we feel and then move on. I think it is just a process, and in order to cope you need to go through the process over and over, I don't think it ever really stops, at least with me it hasn't. And then there are the days that I think, "do I have to go in there and start this day all over again?" But, when I go in there and she is peacefully laying there in her bed and looks up at me and gives me her angel smile. That is my wake up call and that is what helps me get through the hard times. Thanks for all of your articles.

    - Gail Ellinger

  • December 10, 2008 12:13 p.m.

    I just wanted to share this site, www.thecaringspace.com It's a great resource for families looking for assistance and health services for a loved one with alzheimers. Families seeking caregivers can register for free right now. They get unlimited access to an entire network of caregivers, optional promotion of their position to interested caregivers, free conference call service, as well as helpful resources and downloads! The site's online caregiving community is rapidly expanding so it's really a good place if you're looking for alzheimers care help. Good luck!

    - Sasha

  • December 9, 2008 2:54 p.m.

    Yes, how simple it is that we need our feelings acknowledged for a moment in time but yet it is so hard for others to give. They need to fix things by giving advice on a situation that most can not even imagine. It is a lonely, thankless, tiring, sad, never ending job but I see my face in his and pray someone will be kind to me too when the time comes.

    - Lisa

  • December 3, 2008 6:01 p.m.

    Hello Angela, This website has wonderful information that will be helpful for many people. I wanted to ask when did Mayo Clinic start the Alzheimer's website? Thanks, Henry Delu, Jr.

    - Henry Delu, Jr.

  • December 2, 2008 3:14 p.m.

    Alzheimer's? Nancy Reagan described it best: The Long Good Bye. I took care of my mother until her death. Daily, several times a day, she would lament she wanted to go home. In April 2006 she went home to her Lord. My two son's were very supportive and helpful to me. They stood by my side as her brain finally told her body "enough is enough." She is at peace now. Its really hard for people who haven't experienced the care of an alzheimer's patient to understand the agony of a family member who is the primary caregiver. I am forever grateful for the compasion and understand of our local Hospice. What a wonderful organization.

    - Carol

  • November 30, 2008 3:05 p.m.

    My name is Kathy Hatfield and I am the primary caregiver for my 80 year old Dad who has Alzheimer's disease and lives with me in North Carolina. I am writing a daily blog on my caregiver website that shows the lighter side of caring for someone with dementia. There is also lots of information about dementia and caregiving, as well as a LIVE CHAT every Tuesday night at 7:00 p.m. Eastern time for caregivers who need support, but cannot attend a “live” support group. Please pass this link along to anyone you feel would enjoy it. www.KnowItAlz.com Thanks, Kathy

    - Kathy Hatfield

  • November 25, 2008 10:33 p.m.

    When my husband was dying of cancer 21 years ago (or was it yesterday?), several kind and loving people insisted I cheer up, things couldn't be that bad. And it was hurtful, that they wouldn't let me grieve in their presence. And I would stifle my anger and smile to comfort them -how unfair, to ask that of me at that time! But they meant well. I think they just did't know how to handle the situation - nor did I. But my true smiles were all for him, and he and I and God got through. Beautiful poem, words for the spirit. Thanks!

    - Anne Beckert

  • November 25, 2008 5:02 p.m.

    Thank you for posting that. I moved my Mom in to live with me 10 months ago, she is 91 years old and I didn't have a clue what it would be like. I feel validated today, after reading this. It IS like a constant mourning and you don't feel like smiling or being happy. People just don't get it. I thought it was just me. I will get some help in, at some point, but I wish more people would understand just how difficult it is to live with someone who forgets who you are, calls her dead relatives daily and complains about everything. Do that 24/7 and smile. I do it out of love for my Mom and will continue to do so, but I cannot ever say it was fun.

    - Anne

  • November 25, 2008 1:25 p.m.

    Thank you. It's ok to be sad.

    - Chris

  • November 25, 2008 1:07 p.m.

    Having been a caregiver for my mother for 9 years in my home and now visiting her in a nursing home for 2 years, I know it is very difficult to stay upbeat when that person you are caring for is not the same person you knew before they became old/ill. It's almost like you are dealing with a stranger. I feel there is a point where the caregiver MUST think of of his/herself and find permanent full-time care of their loved one, because the mental and physical health of the caregiver will certainly be compromised.

    - Sonja

  • November 24, 2008 7:35 p.m.

    These are wonderful sentiments and as a caregiver I appreciate them so much. I'm weary of trying to remain upbeat and positive about my Mom's dementia. Some days I just need to grieve.

    - Robyn

  • November 23, 2008 1:20 p.m.

    Thanks so much for bringing attention to this important issue. AccessDNA.com

    - AccessDNA

  • November 22, 2008 8:01 a.m.

    Thank you very much for this entry. I'm not a caregiver -yet- but I see a lot of it around me in my retirement community. I think one of the worst things a caregiver's subjected to is the kind of relentless cheerfulness exhibited by people determined to not let people feel what they feel. That's just another form of denial.

    - Sanpeter

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