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    Angela Lunde

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  • Alzheimer's blog

  • Aug. 9, 2011

    Why do some caregivers cope better than others?

    By Angela Lunde

97 comments posted

Alzheimer's Caregiving

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I was quite sure my last blog would create a wide and strong range of opinions, and indeed it did. A few of you were somewhat critical that I attempted to make "lemonade out of lemons." In many ways you're right, as that is the approach I choose.

I've been deeply involved with caregivers for over a decade. Most have devastating and heart-wrenching stories related to a loved one with Alzheimer's disease. For each of them, the progressive nature of the disease takes its toll — no one with Alzheimer's disease gets better.

The challenges and difficulties caregivers are met with can be similar. However, what differs vastly among caregivers is their acceptance of the situation, the ways in which they respond and ultimately cope. I believe you can choose acceptance, choose how to respond to a situation and choose how you cope. And it's these choices that can bring more ease to life even in the worst of circumstances.

Let me tell you a bit about Doris. I have known Doris for several years. She and her husband Roger have been involved in our early stage programs and Doris has been coming to support group for over 2 years. Here's a comment Doris made in our support group not long ago (paraphrased):

"When is there going to be a program or a place where trained professionals would meet with my husband Roger to get him to understand why he can't drive? I think there needs to be a place where I can take him where they would get through to him, so I don't have these battles every day. I explain to Roger all day long why he can't drive. I tell him he needs to talk with our daughter about his driving. I show him the results from his cognitive evaluation, and he still thinks he should drive. He doesn't want to listen!"

Clearly, Doris feels cheated that no one will come to her rescue and get her husband to understand. I can see and feel the frustration and anger that spill out of Doris. Getting through to Doris the reality that there's no getting through to her husband with Alzheimer's disease continues to be arduous work.

Doris is not alone. Almost all caregivers deal with issues of acceptance. It's part of the burden of Alzheimer's disease that it changes the brain and consequently the behaviors of the person you love. It's often these changed behaviors that are hardest to accept. Naturally, you want to fight it. You want the person to be as he or she once was.

In the face of the challenging behaviors brought on by Alzheimer's disease, how does one cope? Why is it that some caregivers seem to cope better than others? How can one find ease in such a devastating situation? These are real and honest questions that none of us can easily answer.

However, I've found that when caregivers begin to understand the truth in the following statements, they've taken a pivotal step toward being better able to cope:

  • People with dementia experience loss and loss of control. Feeling out of control naturally leads to behaviors of agitation, irritability, anger and depression. The more often caregivers tell the person what he or she can't do, the more the behaviors tend to escalate.
  • Dementia symptoms include a decline in the ability to communicate effectively through words, so behaviors such as irritability and aggression fill the void. In other words, there's a message behind the behavior.
  • People with dementia are not lying, lazy, aloof or disengaged. Rather they can't remember or process information because of the changes in their brain.
  • Lack of insight into one's limitations is a common symptom of Alzheimer's disease. People with Alzheimer's disease often can't admit something is wrong with them. This is due to how the disease affects their brain.
  • The physical changes in the brain cause new behaviors that people with Alzheimer's disease aren't able to control. They aren't choosing to be behave this way.

It's common for caregivers to blame or be upset with the person with dementia for not doing what they want or ask. Yet, the truth is you can't force someone with Alzheimer's disease to remember or learn, nor can you expect that logic will change their behavior.

When and if you believe these statements to be true, you begin to relieve yourself of some excess pain. And for most caregivers, a little more ease is a welcome gift.

97 comments posted

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  • March 29, 2012 7:50 a.m.

    good stuff

    - chelsea

  • January 1, 2012 10:22 p.m.

    I know that I am way late in posting to this blog entry. But one issue that often is ignored is the reaction/behavior of other family members. This can either support or aggravate the situation, resulting in relatively smooth or very rocky caregiving situations. I would like to turn the question around: "Is there some place that one can send ones hyper-critical relatives, or those who are in denial, to teach them about the issues involved in caring for someone with Alzheimer's disease or other dementias?" Positive support from relatives who are not on the front line can go a long way towards helping those who are dealing with the day-to-day issues. When my mother showing early stages of dementia, my (non-local) sisters were in total denial. If they were visiting, they automatically took on many tasks that my mother no longer did well without even thinking of what that implied about "normal" life. And then once things had degraded to the point that the dementia was no longer ignorable, they either tried to tell me how to manage things, or complained about what I either was or wasn't doing. My stress during that period had a lot more to do with the reactions of my siblings than my mother. This probably could be something that could be better managed.

    - Ellen

  • December 30, 2011 7:42 p.m.

    I'm so glad I found my solution onilne.

    - Ruvell

  • October 13, 2011 3:51 p.m.

    My wife was adopted, and several decades ago found out that her birth grandmother died from Alzheimer's disease. At present, we both realize that something is wrong with her. She has begun to loose memories that should be set in stone as well as day to day ones. We are trying to face this without facing it. I feel like I should look into long term care before seeing and doctor, and giving an insurance company a look. My wife is only 48 years old, we have been together for 28 years, and just the thought of losing her makes me dizzy. It appears that a doctor cannot really help slow the progression, so I have not gone down that road yet. Does anyone have anything to share that may be of help? I am overwhelmed by this and don't know if I am acting in her best interest by not bringing this to the attention of her physician.

    - Michael

  • September 23, 2011 10:49 a.m.

    I so agree with the above information. I live with and care for my 90 1/2 yr. old father.( have to put the 1/2 in as Dad insists that is his age :) ). BUT when you are in the moment sometimes it is HARD to remeber that they do not have control over the way they process information. I know with Dad the days i am MOST sad, frustrated and angry are the days he is struggling more with transfers ( he is in a wheelchair) and confusion and following directions. Sometimes the only way i can get him to listen to me is to yell at him. He then gets mad at me and i get upset with myself. I don't like to yell and i imagine he does not like hearing that. It is soooooooooooo difficult. One day he can be more "ok" and the next day he can't figure out how to put his arm through a sleeve. THis disease is a "crazy maker". He was diagnosed with moderate dementia. Do not knwo what kind and he is not interested in going through the neuropsych eval. It would not change the treatment ( i am told by MD) so, why do it? I am curious as to what exact type it is but that is NOT a good enough reason. I understand the above but i also sympathize with Doris and know what she is going through. I sometimes feel the same way......IF someone else explains things perhaps he will understand better.................. i know in my heart that is not so BUT...........

    - Maryann

  • September 22, 2011 11:32 p.m.

    My husband has had ALZH for about 6 years and is failing but still pleasant. I think I am lucky so far to have him home with a daily caregiver. he also is patient and does as we ask. that is another reason I can cope better than some. When he seems restless and bored and we try to keep the exercise and activities going. He has trouble walking. His biggest problems are fear (of being alone)and confusion about where he is. My big worry is when he has to go to a home and may not get the comfort and love we give him. I do not fully understand the hospice criteria. He does see people that are not there and speaks of death. I guess all any of can do is the best we can. We always answer him no matter how many times he asks the same questions. we owe him that.

    - Molly

  • September 22, 2011 2:25 p.m.

    You just have to ride out the storm with this disease. Love the person, and hate the disease. Treat your loved one as you would want to be treated if in similar circumstances. Time will heal all wounds ! I was thinking about how one should react with such a disease, and it made me think of the fine priest in the movie " The Exorcist " He took so much abuse from the little girl, but he new it was not her, but that she was plagued by demonic spirits, but out of the love and strength of God, he remained strong and rode out the storm.

    - Dana

  • September 9, 2011 8:12 p.m.

    My husband was diagnosed with Alzheimer in 2006. During the next 5 years I cancelled everything else in my life but caring for him. His decline was rather rapid. In 2011 he became overly aggressive; wandering all night and havingt frightening hallucinations. I still resisted admitting him to a home. My doctor ordered hospice home care. They have an 8 week program that provides weekly visits from an RN specializing in the disease. I received very helpful information and counsel about his care. Then, one night he started hallucinating and began tearing at the drapes and banging on windows wanting to "get out" and go home. It was becoming a safety issue for him as well as me. Hospice helped me accept the fact that it was time to admit him. I felt terrible guilt. Hospice nurses still saw him 3 times a week in the home. Soon he got so aggressive that they had to send him to an inpatient hospice facility. I was with him every day; the guilt was amazing. On the fourth day at the hospice facility I was told he was changing and was likely not going to live through the night. I was still in denial, but Hospice providers were a blessing. He passed away peacefully that night as we sat by his side. I am grateful I dedicated those five years of my life to him, though it was heartbreaking and backbreaking some days, my love for him grew even greater. I strongly recommend talking to the doctor about hospice home care...it's fully covered by medicare...it saved me!

    - Fawn

  • September 1, 2011 5:40 p.m.

    Anne: I don't have any good advice regarding the "dream people' except that you are not alone. My Dad just told me last week about the "people" who come to him at night and tell him to move papers. I asked my Dad if his people were scary and we talked about it. I thought talking about the people in a calm, matter-of-fact tone was the way to go. Next I would talk to your physician. My thoughts are with you.

    - Karen

  • August 30, 2011 4:43 p.m.

    Thanks for the reminder you cannot force someone with Alzheimer's disease to remember or learn not can you expect that logic will change their behavior. When my husband goes on his computer to check his emails and has problems and I want to give him help;he gets upset and refuses the help from me I will try and remember this statement.

    - Donna

  • August 28, 2011 5:21 p.m.

    My wife has had dementia a couple of years now. I am not at the level of quiet or peaceful acceptance at which I would like to be when she does something that catches me off guard. for instance, asking her to hold my glass in the case, while I get the car from the parking lot, and discovering that they are missing when we get home. Yet, with love and understanding that she must be aggravated with herself when she cannot understand/process what she wants to do, even to giving her a hug and assuring her all is O.K., she seems to be at peace with herself. Each day I pray that I will reassure her of my love and put humor into the unforeseen things that happen. Oh! I forgot to mention, that I have a 30 second blowup, and quick recovery, every once in a while.

    - Alfred

  • August 23, 2011 3:09 a.m.

    I have a question for Ms Angela Lunde. Please comment on the validity of the following case Study: http://www.coconutketones.com/WhatIfCure.pdf and also on Dr Newport's discovery in your next newsletter http://www.infiniteunknown.net/2011/04/12/dr-mary-newport-coconut-oil-may-stop-and-reverse-alzheimers/ Thanks a lot.

    - Edith

  • August 22, 2011 3:59 p.m.

    Ruth: we discontinued Aricept also because of the dreams and diarrhea. Some claim taking Aricept in the morning does away with the dreams.

    - shirley

  • August 22, 2011 3:32 p.m.

    Anne, For what it's worth, my husband's violent, terrifying dreams ended when we gave up Aricept at the suggestion of a geriatric psychiatrist

    - Ruth

  • August 22, 2011 3:23 p.m.

    Your comments about loving more and caring less truly struck a nerve for me. I have a little ditty I sang to myself several times a day --- let it go, let him be, you can't fix it, you can't change him, let it be. To that I've added, before the "last let it be" --- care a whole lot less and love a little more. I do a few dance steps. And most of the time I don't insist the shirt be worn right side out or the multitude of other behaviors that can drive you crazy OR NOT. Good days and bad days are all about where my mind is. And I can feel him respond to my mood/attitude.

    - Ruth

  • August 22, 2011 10:47 a.m.

    To every person that is involved in the care of a person affected by dementia & Alzh to family or professional trained (from home aid to Dr., social worker, nurse, etc, I recommend reading the book Gentlecare by Moyra Jones (changing the experience of Alzh. disease in a positive way). I am the provider and care giver at Premier Gentle Care an Adult Family Home (AFH)in Sammamish, near Seattle. The elderly and their family should be more informed about the existence & the services of AFH and the fact that they are home like alternative of nursing homes. This homes are licensed, inspected by Dept. of Social and Health Services (DSHS)or Health Dept. and in compliance with state rules and regulations. They are available in 20-30 state in USA.

    - Vera

  • August 20, 2011 8:44 p.m.

    Dear Fay: Things indeed sound hard. I am a registered nurse working as a discharge planner in a hospital. I know about getting people into nursing homes. You don't need your husband's doctor's approval, though it is easier to get a bed,if you have it. You need a way to pay (long term care insurance, out of pocket, or Medicaid). My husband is in the later stages of Alzheimer's too, though he can still walk, if someone gets him up and in motion. As with your husband, he is a lot of work. Just keeping up with the laundry is nearly a full time job. He is home and I a managing, but I pay for help. My husband has a "memory doc" and a primary care doc, both have told me to "put him in a nursing home" . Back to your situation, it is hard to believe your husband's doctor is not more supportive of you. It sounds like YOU are at serious risk for an injury or illness that completely sidelines you. If that happens and there is no one else to take care of your husband, he will end up in a nursing home, like it or not. Maybe it is time to seek out another doctor that looks out for both of you. Good Luck.

    - Linda

  • August 19, 2011 10:27 a.m.

    Sorry...there are OT driving rehab specialist everywhere

    - Lisa Ann

  • August 19, 2011 10:21 a.m.

    I just have a comment regarding driving. There are occupational therapist driving rehab specialist that can assist the families with driving cessation for clients and their families. They will have suggestions that could help. There are OT driving rehab specialist in seattle....

    - Lisa Ann

  • August 19, 2011 1:27 a.m.

    TerryC, thank you so much for the web sight Thealzheimerspouse.com. It is a wonderful site that has already helped. Reading her blog let me know there are others that are having the same problems with physical ailments like me. I really appreciate the information. Thanks again,

    - Fay

  • August 18, 2011 8:16 p.m.

    It is so helpful to remember the law of VARIABIALITY as it effects one with Alzhiemers and the caretaker. So many life experiences and factors effect both the ways in which Alzheimers manifests ( how easy is it for many of us to recognize an exaggeration of many traits that have always been a part of who he or she is) and the ability of a caregiver to exercise choice in responding. For example, patience has never been a personal strong suit, and my husband's Alzheimers gives me an opportunity to learn to practice patience. Some days I'm golden and some days I'm not, and the difference in my response usually has little to do with my husband's symptoms and everything to do with what else I have on my plate, and whether I'm tired or hungry. VARIATION....pay attention and notice.

    - Lee

  • August 18, 2011 5:00 p.m.

    Ann-My mother-in-law is taking an anti-psychotic medication that eliminated the hallucinations she was experiencing. Maybe your husband's doctor can help or refer your husband to a psychiatrist who prescribes such medication.

    - Alma

  • August 18, 2011 10:58 a.m.

    Fay check out thealzheimerspouse.com go to message board and look at the discussion "cool way to change pull-ups without removing shoes & pants" Haven't look at the video but comments from other spouses it was helpful. And your situation is repeated on the sight from other spouse's you might find some help hints and some good ears to help and respond.

    - TerryC

  • August 17, 2011 10:20 p.m.

    My husband cannot walk and now he cannot stand. He is in a wheelchair and it is very hard to take care of him. I have to help him out of bed and in the chair then he decides he wants back in bed. I have had surgery on my thumb on lf hand and middle finger on rt hand.From pulling on him and now need it on another finger. My right shoulder pulls out of socket, my elbows have inflamation. It is very painful but he does not want to go to a home. I cannot find good help. The drs say we cannot force him to go to a home. What am I to do? I have also had neck surgery and low back surgery. I am wearing my body out and do not know where to turn. He does not understand so I just keep on doing what I have to do. It is so hard. He wets the bed and has to be changed consantly. I have to change bed daily, mop floors, bathe him, dress him, everything for him. He does not try to move the chair so I also move him around in the house. This has been for almost four years. How can I arrange to have him go to a home? I have to have help soon or I will not be able to take care of him or go visit him when he does go to a home. He is almost 88 and it is like having a 180 lb. dead weight baby that can only feed himself. I love him so much but it is finally getting to me.

    - Fay

  • August 17, 2011 5:25 p.m.

    MY HUSBAND HAS DREAM PEOPLE THAT HARASS HIM EVERY NIGHT.IS THERE ANY HELP FOR THIS? HE WANTS TO TURN THEM OFF. I TELL HIM THEY ARE NOT REAL, THEY ARE "DREAMS" .HELP,ANYONE?

    - Anne

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