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  • With Mayo Clinic health education outreach coordinator

    Angela Lunde

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  • Alzheimer's blog

  • Sept. 20, 2011

    Connecting with strangers helps calm caregivers

    By Angela Lunde

68 comments posted

Alzheimer's Caregiving

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As I sit quietly today and read each of your posts over the past 2 weeks I, too, find myself with feelings of anger and sadness.

In a disease like Alzheimer's, there's no cure, the journey is unpredictable, and absolute solutions are non-existent. I feel sad that too often there isn't a fix for the challenges you're going through. And that so many of you must endure the physical exhaustion and emotional demands of caregiving, as well as the isolation it creates — even from your own family members. I'm angry that this disease is largely ignored by so many, including our own healthcare system.

For each of you, I wish to ease some pain. Often I can't. No one can. Humbly, what I can offer you caregivers is information and education to aid in understanding the disease. I can reinforce seeking support and respite services. I can discuss insights for managing behaviors and strategies for communication. I can provide a forum for each of you to know that you aren't alone and validate both your experiences and feelings. In some small way maybe I can offer thoughts about tapping into one's inner strength to accept and cope with this unchangeable situation.

But today I'm doing what I often ask of you. I'm going to simply be with my emotions — my anger, sadness and helplessness. Yet, for me, relief comes in knowing that all emotions are cyclic. In other words, none of us can have the experience of sadness without also having a relationship with happiness. Nor can we know what calmness is without having feelings of anger to compare it with. I have some comfort in knowing these emotions will pass.

Blog readers and writers, thank you again and again for sharing your emotions, your humanness, in all its vulnerability. Most importantly, thank you for being there for one another. When anger and sadness set in for you, believe above all else, it is our human connectedness that brings us back around to some sense of contentment or happiness.

"Look at all of us. We so desperately need someone to talk to we talk to strangers. And I, for one, am grateful for you all."

- Bonnie, blog comment on Sept. 11.

68 comments posted

blog index

  • September 10, 2012 10:31 a.m.

    Last week Jim asked about Alzheimer's Caregiver Support Groups in his area of Rochester, MN. Jim there is a support group offered through Mayo Clinic and the Alzheimer's Association that meets twice a month. For more information call 507-289-3950. For those of you looking for a support group in your area, I recommend you call the Alzheimer's Association Information Help-line at 1-800-272-3900, or go to www.alz.org

    - Angela

  • September 5, 2012 3:18 p.m.

    I live in the Rochester, MN area. How can I find out about Alzheimer support groups in this area?

    - Jim

  • November 17, 2011 2:13 p.m.

    dear blogger,i have sat and read all your posts..i have tears in my eyes because you all have said the same things that i am feeling and dealing with every day..i thought i was alone and isolated..i recently lost my father and going thru a divorce and have been abondond by my family..they dont want to hear the truth about my mother..she has been diagnosed with early stages right now..i have 2 young daughters,sometimes it feels like i have 3....i just want to say thank you for sharing your life with me..it is very much appreciated.and very helpfuul to me right now..i know that i am not alone..

    - cindy

  • November 4, 2011 8:17 a.m.

    Dear Pat, The best thing I could do for you is pray,which I did. I prayed that you would receive help in healing your husband,and that he would respond. From what I know to be true,the withdrawal will only last so long.It will have an end,and then,perhaps,the doc will be able to give your husband something for the tardive dis.--Also,it never hurts to get a second opinion.My best to you in your important work.God bless.-Mare

    - Mare

  • October 23, 2011 1:12 p.m.

    For those of you struggling as caregivers for people with Alzheimer's- watch this video. It has given me some hope and the meditation is suggests to do is backed with new research. I highly recommend it. Best wishes. http://www.youtube.com/watch?v=eVETSxQADy0

    - Sarah

  • October 5, 2011 4:43 p.m.

    Angela, could you please move my post of today which I erroneously entered under the September 20th blog and move it to this one? Thanks,

    - Pat

  • October 5, 2011 10:27 a.m.

    Dear fellow caregivers. I haven't been able to spend time on the blog recently as my husband's dementia has landed him in the hospital for 15 days as they tried to stablize him after adverse effects from withdrawal from Haldol. I am desperately seeking any information that you can share about your experiences. He SCREAMS out incessantly, day and night until he is totally exhausted. The withdrawal has caused him tardive diskenesia which is the clenching of the jaw, and neck muscles. Unfortunately, it happens 24/7 and the only peace he can get is a few short hours of sleep from his total exhaustion. As I am writing this , he is screaming out and has not stopped. He even talks in this "screaming voice". His gero/psych doc says it is behavioral and she doesn't want to give him medicine because he is so sensitive to meds that they "piggy-back" on him and cause him to go into a different state of confusion. If you have any ideas or gimmicks that might help it would be great. I have tried the music with earphones, soft comforting stuffed animals, "ben gay" rubs on his knees and wrists because fo the "Parkinson-like" symptoms he has developed. On top of all this, he is blind and can't really communicate his discomfort. My heart breaks for him because I don't know how to "fix it". Please please write if you can help. Bless you.

    - Pat

  • September 28, 2011 6:57 p.m.

    CAN SOMEONE PLEASE TELL ME WHERE TO GET ANY INFORMATION ON THE LATER STAGES OF ALZHEIMER'S. NOT THE LAST STAGE BUT JUST BEFORE THE LAST STAGE. I HAVE ASKED MANY LIBRARIANS AND OTHER SOURCES I NEED HELP PLEASE. MY HUSBAND IS FAILING MORE QUICKLY THAN OTHERS I HAVE READ ABOUT HERE, SO I PLEASE NEED SOMETHING TO READ AND UNDERSTAND THE STAGES HE IS IN NOW AND WHAT TO EXPECT.

    - GLENDA

  • September 28, 2011 9:03 a.m.

    I find most of the comments to be similar. One that I find to be of concern is about "friends" and "true friends". What I have found is that some that we have considered true friends and who seem to have become fair weather friends is that they are afraid. I do not hold it against them, I try to understand. AD is a perplexing illness that nobody, not even Drs. can understand. My wife is in a memory care facility. I visit her everyday. None of the other residents are true copies of each other. Each one exhibits some different symtom. I have learned to be flexible and treat every day as a day to learn something new. One of the aides said that she had been working with AD patients for 15 yrs. and had never seen anyone like my wife, so even the pros keep learning.

    - Millard

  • September 27, 2011 11:30 p.m.

    To Nick whose wife has frontotemporal dementia: My husband has this and I feel angry and frustrated too. FTD is so difficult to deal with as the person you knew seems to be gone, and another one--who you never would have married--has taken their place. I tell myself he is in there somewhere and try not to forget what a wonderful person he was before this disease. At times I've had difficulty remembering what he was like before. But if I don't make myself remember I will lose compassion, which has happened so many times. I am always asking him, and God for forgiveness for my frustration, anger and impatience. I'm getting over feeling that he has to be included in every social event I go to. I can't enjoy myself when I'm constantly worried about what he will say or do next. Our social life together is getting smaller and smaller, but we have a few people who are true friends and that is what counts anyway. Don't beat yourself up, Nick, because of your feelings. It's not about feelings but about doing the right thing. All we can do is our best in the moment, and ask God to make up the difference. Just that you bothered to ask for hints shows that you are a concerned and caring person. Do one nice thing for yourself every day. The Bible says that anyone who lacks wisdom should ask God for it and he will freely give it to anyone who asks. I have experienced this in my life and in others, and why do I not learn to do this first? I am not in tune with the "still small voice of God".

    - Karla

  • September 27, 2011 3:36 p.m.

    We have just came home from yet another hospital visit. The second one in a month. He is having what I am calling seizures but the doctors say it is his alzheimers. Sunday morning he woke me up screaming as if he were in severe pain, started the shaking and gurgling then past out and was unresponsive to me and the paramedics. I am told this is a part of his alzheimers. I have never heard or read of anyone doing this before. Just checking for any feedback as to if this has happened to any others.

    - vicki

  • September 27, 2011 12:24 p.m.

    Hold down the CTRL key while scrolling the wheel in the middle of your mouse.

    - shirley

  • September 27, 2011 9:28 a.m.

    My dad is 87 with dementia, and my 91 yr old mom (ok, still drives, etc.) stubbornly insists on taking care of him most of the time. He is up and down all night, and 'camps out' in the bathroom during the day, so she is exhausted/up and down the stairs, coaxing him to come down for meals--whole schedule is mixed up. We are finally getting her used to the periodic health aide concept. I am in town and visit a lot, and constantly worry about them. Thank you all for your comments--they are helpful. MaryAnn, call a local church--a lot of them have a parish nurse or outreach person, and they will make home visits and maybe put you in touch with some other church members who will visit, so you don't feel so lonely. I'm thinking of you. God Bless.

    - Carol

  • September 27, 2011 1:37 a.m.

    Dear Angela Lunde, I, too, am having trouble reading the letters here as they are very small. I tried the method to enlarge that you mentioned for someone else and it did not help much. Is there a way to send it to us with larger characters? Thank you so much as it is a life line for many of us.

    - Virginia

  • September 27, 2011 1:22 a.m.

    This is for Kathleen whose mother won't bathe or change her clothes. You need to have an understanding that they have lost the ability sometimes to clean themselves. They don't think they are dirty. I take all my husband's clothes after he goes to bed to the washer.He loves wearing the same thing every day. When something gets worn from wearing and washing. I do not ask, I just toss it in the dumpster. And replace it with something new near the same color and style. He is happy. If you establish a routine and give her lots of assistance (maybe she doesn't need it every day)with a happy face on, she will be more receptive of your ideas. There is no right way....but don't give up. Try speaking to her doctor about your frustration. This blog is helping me a lot so keep reading it - sometimes more than once.

    - Virginia

  • September 26, 2011 11:54 a.m.

    Since I have a family history, I have taken care of a loved one with Memory Loss issues and it can be very osolating. I also am concerned for my own health and well-being to be able to he healthy in my later years. To slow any progression for my own brain benefit - I include in my diet CerefolinNAC to include the L-Methylefolate - an active form of folate that the body can use efficiently. I have worked with this product in the past and found more information at Cerefolinnac.com in case this is not familiar to you or your doctor. Taking care of yourself while taking care of a loved one can be overwhelming.

    - AmalieE

  • September 25, 2011 6:01 p.m.

    i am caring for my 90 1/2 year old father. I get no help fomr three siblings. Two live out of state and one lives close. I moved from out of state to care for Dad. I have such angry feeling towards my siblings. I keep telling myself that this is my choice to help Dad. THey certainly don't seem to understand what i am going through with him. I ahve aksed for there help but they always have some excuss as to what is going on in there lives. I thinks...gosh..i gave up work and a life to come to take care of Dad. He is wheelchair bound and has dementia as well as other health issues. I feel sooooooooooo tired adn worn out. I ahve been doing this for over two years . I feel so isolated and lonely. I ahve not lived in this area for 40 years and ahve no friends here. Nobody stops over at the hosue. It is so lonely. I am not sure what to do or who to look to for help. Any suggestions? There is not alot of finances to pay for help.

    - maryann

  • September 25, 2011 2:20 p.m.

    Cath T Older people bruise very easily. My husband is on the anemic side and he always has bruises. Mention it to the dr. next time you go.

    - Shirley

  • September 25, 2011 2:18 p.m.

    Sabine: You can make the print larger to read by pressing down on the CTRL key and scrolling the wheel in the middle of your mouse. Hopefully that will work for you.

    - shirley

  • September 25, 2011 12:15 p.m.

    I have a question that I am posing to other caregivers that I just thought of today....do any of your loved ones ever have bruises on their arms? I am wondering if my mother might be getting up at night and walking into things? Any others out there who have seen this?

    - Cath T

  • September 24, 2011 4:53 p.m.

    I thank you for having this blog. The reason I turn to strangers for added comfort with dealing with the challenges of my mother's symptoms of alz is because yes, family and friends seem to prefer to be in denial which I really think is cruel and unfair to my mother and me and my own immediate family. It really baffles me to discover just who our real family and friends are.....it really has been quite the wake up call and I thank you all for your ideas and sharing of stories. I am also joining a caregiver support group this week....will share some ideas with you all from my new group of friends. I think it's important to realize that they seem to really live in the present which is how we've been approaching this.

    - Cath T

  • September 24, 2011 1:26 p.m.

    Funny how you can turn to strangers & find comfort & help in time of need. My little 89 yr od mom has dementia. She also has incontinence. No one else in our family will address this problem with her. Another care-giver posted her comment to how she approached her dad when he would soil his pants. simply saying 'Dad I dont mean to embarass or demean you, but it seems you have wet your pants. you need to change your clothes.' This approach with my mom has really helped. Thank you care-givers for your encouragement & support. It seems that uninvolved family members is a universal issue. Why is that?

    - marie

  • September 24, 2011 11:02 a.m.

    @ Catherine - September 23, 2011 9:46 a.m.... do what you can. Hold onto what you can, be there for what you can... hold on to 'yourself'. You cannot help if you cannot take care of yourself. Hang in and breath...blessings and strength

    - Rachel

  • September 24, 2011 10:41 a.m.

    I am 91 years old and have a son who is 62 years old with early onset frontotemporal dementia. He stays with me several days a week to give his wife a respite from his care. How can I oxccupy his time with me? He cannot communite with me other than a few words and is unable to do simple tasks. Other than watching TV when he is with me what tasks could we do? Heartsick mother

    - Mother

  • September 24, 2011 9:13 a.m.

    Due to discovery of porno sites using My Perfect Wife as title, I have changed my caregiver's BLOG address and invite anyone to view and read at http://alongdarknight.wordpress.com. Here I have shared my experience as a caregiver of my wife with dementia.

    - Philip

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