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    Angela Lunde

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  • Alzheimer's blog

  • Jan. 24, 2012

    Negative thoughts make Alzheimer's caregiving harder

    By Angela Lunde

56 comments posted

Alzheimer's Caregiving

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This morning I went to teach a yoga class at a local studio. Each month, The Karma Yoga Project offers a yoga instructor the opportunity to guide a class for the community with a free will donation collected for a charity or non-profit. The Alzheimer's Association was my non-profit of choice. I arrived shortly before the 10:00 start time only to discover that is was actually an 8:00 start time.

Almost before my next breath my mind raced: "Am I a complete idiot, how could I be so irresponsible?" Followed by my cynical self thinking, "Well, given the week I've had wouldn't you know something like this would happen." Like an automatic switch, my mind was drawn into negative self talk. Remember, our mind believes what we tell it, so in those next several minutes I felt miserable and defeated.

I bring this up because last time we talked about setting intentions and daily affirmations. In this situation, it didn't matter what my intention was, or the daily affirmation I was particularly mindful of. Something bad still happened. Or so it felt.

Similarly, Deborah replied to the last blog with this: "I do try to have a positive attitude but I have to tell you just telling yourself each morning that this day is going to be really good does not change a thing." And I have to imagine that many of you may feel like Deborah — believing it to be an impossible task to think positive when you're living the life of a caregiver. Bad things will happen even with the best intentions.

Whether or not you understand or buy into the power of intention and affirmations, maybe we can all agree that there is a connection between what we think and how our thoughts make us feel. Our thoughts shape who we are. Behind every situation there is a thought, and how we perceive that situation and respond determines how we cope, or not.

In other words, the stress you feel is not only the result of your personal caregiving situation but also your perception of it. Caregivers are uniquely susceptible to unhelpful thought patterns. One example is that of over-generalizing. Let's say the one you're caring for is repeating the same question over and over. Negative thinking would be, "When is this going to stop? This will go on all day. No one understands how difficult this is."

Positive self talk on the other hand sounds more like, "This doesn't go on all the time. After a while he usually gets distracted by something else. I can remain calm and patient for a while longer. This is a symptom of his disease."

The fact is that we can control our thoughts and our mind believes what we tell it. So, when we channel thoughts in a more positive direction, things are better. More often than not, we gain a sense of control and the resilience to cope more effectively with the stress and demands of caregiving.

Why is this concept of positive self talk, affirmations, and perceiving the glass half full rather than half empty one I speak about frequently? Because these ideas and tools give us the power to change what we can change. We can't change many of the realities of Alzheimer's, but we can change our thinking and that changes how we feel. Perhaps most importantly, you may find you become kinder and gentler with yourself.

So, how do you begin the practice of fighting off these negative thoughts? First off, know that negative thoughts happen automatically — remember my immediate negative thoughts about the yoga class. The key is to become an expert in identifying your negative thoughts quickly and not let them linger and find refuge in your mind.

Instead of fighting with your negative thoughts, just be aware and observe them. Don't get sucked into them. Recognizing that you are having negative thoughts is vital. It's at that point that you can choose to replace negative thoughts with positive ones and take control of how you feel.

As I got into my car after leaving the yoga class I never taught, I thought to myself, I can make mistakes, I'm human, I'm not perfect and I'm OK with that. Later that day, I received an e-mail from the organizer of the Karma Yoga Project. He wrote that he found it refreshing to know that I could make such a mistake — feels good to know we all share such imperfection he said.

"It is neither good nor bad, but thinking makes it so."
- William Shakespeare

56 comments posted

blog index

  • May 28, 2012 6:23 p.m.

    I am a caregiver now. My husband was diagnoised with alzheimer's in 2004. To watch the changes in him is very very hard and to care for him is very difficult. My husband can still at this point be up and around but yet so confused and lost. Even though he had polio as a child the Doctor tells me he is healthy otherwise at 77 years of age. He use to be so active before this happen and always so busy. To exspell some of his energy he seems to be obsessed with wiping on the table with his hand while sitting there. When he sits in a chair he is constantly running his hand up and down the crease of his pants and it is though he doesn't hear me when I try to divert his attention to something else. He is up a lot a night always wanting to go home. I too see such a big change in him around the full moon.....about a week before. It is a very difficult time. Also I find on rainy dark days it is best to burn lots of lights because the darker days seem to confuse him more and it is harder on me. My Doctor has recommended that I try to get to the gym several times a week to do some type of exercise to help my sanity. I do find this helps a lot. My heart goes out to those dealing with a loved one who has this terrible disease. It took me a while to realize I have to understand this is not the same sweet, caring wonderful person I have always known. That person is gone.....they leave you before they really leave you. I am so glad I found out about this website.

    - Barbara

  • May 25, 2012 11:40 a.m.

    I am a caregiver and have been a cna for 8 yrs now. Taking care of someone who has alzheimer's can be a difficult at times. At this time I am dong private in home care and one of my client's is in the 3rd stage. I have taken care of this person for only 6 months and have seen her decline drastically. At times I go outside and take a break and cry. This is not an easy thing for family and friends to handle and my best advise to anyone is please be empathetic. If you could just put yourself in their shoes for just an hour..Being confused, not knowing from one minute to the next what is going on..Can you imagine the fear and anxiety of this person..Also please feel blessed and just be there for this person..We are able to make decisions for ourselves and know where we are..how to get to the store and back..Both my parents were in wheelchairs due to polio and some take it for granted what we can do for ourselves..I thank God every day I can walk and do for myself. Without him I am nothing..To have him I can do all things..Hope this helps someone..God Bless and please do not give up..you can do this and you can hold your head up high knowing you can look in the mirror with a smile..I Peter 5:7 this is a good one..take care Kay...Yes I have seen changes in residents when there is a full moon..they will really keep you on your toes.

    - Laura

  • May 5, 2012 8:03 a.m.

    Mary, your uncle might need to be on an anti psychosis medication. You could take your uncle to a GP doctor and discuss the situation with him. I am dad's caregiver, he has dementia and a few years ago dad was acting out very strangely and the doctor prescribed a low dosage medication for his psychosis and all is good now. Hope this helps.

    - Rita

  • March 31, 2012 12:19 p.m.

    Has anyone noticed any correlation between really bad days with the person in your care and the full moon?

    - KAY

  • March 21, 2012 6:07 p.m.

    I was acaregiver to my husband of only 15years, until I was unable to handle the situation alone, he is now in a Long term care facility, unable to walk, confined to a wheelchair, a clever and gifted man is now living in the past, of which I was not part, and I can only guess what he is thinking or asking

    - Jean

  • March 10, 2012 9:24 a.m.

    My 92 year old Dad was diagnosed 6-7 years ago. His 3rd wife has tried to keep him home for financial reasons. He cannot support his own weight, his health has declined and falls. The wife has many health concerns and is unable to continue care but is fighting Dad's full time care center confinement, which my brother and I are recommending. Legally the wife has control. I am trying to avoid a legal argument, just beleive both need to be safe and sound. His wife's children want to honor their Mother's wishes. We are at an impasse. I am considering inviting a social worker's intervention. What does anyone else think ?

    - Diane

  • February 25, 2012 7:30 p.m.

    Having read this great piece of positive thinking, I totally agree with it. However, my 88 yrs. husband is VERY negative about everything. He gets angry over the stupidst things and takes it out on me verbally! Guess I keep getting hurt over what he says and take it personally. (No abuse...just verbal). Anybody have any suggestiions? I try to start each day with a positive attitude which I think is very important, but by evening I'm actually worn out!

    - Dorothy

  • February 25, 2012 2:20 p.m.

    My 60 year old husband was recently diagnosed with early onset Alzheimer's. He has probably had symptoms for 5 years. He is no longer working. I lost my mother to Alzheimer's disease 6 years ago. I took care of her for 14 years. The only think I learned from this disease is that it is evil. I know what is in store for me and my husband. I don't know how to live without hope

    - Ann

  • February 14, 2012 11:07 a.m.

    June,Thank you! WOW your self-awareness is fantastic! Plus you're taking good care of yourself. Over the years I fell into caregiver roles for an Aunt and now for my mother-in-law. Their is stress relief that comes with self-awareness and proper self care -it is a journey! With multiple siblings, an honest, open look / discussion around coping skills/behaviors can help to accept people "where they are" and can help to focus on best interest and care of the one in need (SO important to include the loved one early & when able to honor the dignity and desires of their needs). Initially in my journey the role felt like a burden - feelings transformed into a "gift" and uncovered my passion! Stats show that 1 in 4 people provide care for a loved one. As an effort to help other caregivers I changed careers and bring my skills, and passion to work with an in-home health agency who shares the same passion and quality care where we offer respite care, help people "age in place' etc. I am surprised at the many unaware of such opportunity - so this is one way I can help other family caregivers. Alzheimer ultimately requires 24/7 care or a facility - yet facilities can't always provide one-on-one care as needed. I visit and assist regularly, and recently hired someone to visit the two days/wk. so they spend 3 hrs./ wk to queue at meal time and socialize one-one-one. All the best to you! Thanks again for sharing your story!

    - Theresa

  • February 11, 2012 8:38 a.m.

    June, I understand your situation, but remember YOU are the caregiver to someone who cannot make wise decisions any longer. There has to be a time where you take control of life situations,especially if you are taking care of all appts. Dr.visits shopping ecct.Moving is expensive and exhausting for both of you,so when he brings up just redirect to another subjuct. If that doesn't work remember fixation is part of the disease. My mom after 12 years still planning to move back to her home. I just tell her I'm working on it but will take awhile to get all the arrangements made...she's still waiting but rarely asks anymore. You don't tell him no& put him on the defensive just postpone& redirect to a happy event. Plan something fun to do together. You are strong , and a loving caregiver..you can do it. Good luck. Darlene

    - Darlene

  • February 11, 2012 8:16 a.m.

    Thanks so for this great blog. Reading what others are going through my heart goes out to all of you. I have been a caregiver for my mom,12 years, Alzheimer's and my aunt for 15 years. Believe me when I say I have made many,many mistakes over the years and if there's one thing I've learned for SURE is to take care of yourself. You WILL be a better caregiver if you do& don't let guilt get in the way of taking care of you. It took me a long time to figure this out,so please don't be emotionally stagnant like me!!! It's ok and HEALTHY to say I love you& I need a day OFF!! I'm lucky to have Hospice and homecare to give me those days off,but find them with the many agencies others have written about. For me,each day is different new physical challenges ,stage 6. Her garbled speech and thoughts are the hardest to hear & keeping her from falling is a 24 hr.job!!! But she's still here and I'm grateful for that each day,no matter what. Hope this helps someone,my heart is with each of you. Dvcsewfun garbled speech and thoughts are the hardest now to see

    - Darlene

  • February 10, 2012 8:54 p.m.

    I have had such a frustrating last few days. But last night I just lost it. My husband has this idea stuck in his head that if we move everything would be better. So typically once a year I give in and we move to another apartment, or another town but we just moved to the city before Christmas so that we could be closer to medical appointments and shopping so that I don't have to be away from him so long when I have an appointment. It is a win win situations but I havent even had time to find a support group or respite etc. Then last night he was stuck on the idea he wanted to move back to the city he grew up in. In a different province where I know no one and really he doesnt either. I couldn't cope so I left the room to cry it out. I have never heard of anyone else having this particular fixation. If there is do you have any suggestions for me? I'm tired of moving and just can't do it anymore.

    - June

  • February 7, 2012 8:05 p.m.

    My 100-year old mother, whom I have been helping for 11 years, was recently diagnosed with Alzheimers, moderately impaired. For 4 years I have been angry about all the time needed to care for her. This is the first time I read the Alzheimers Blog and discovered that many caregivers are angry/frustrated! I have been feeling very guilty about this for 4 years, and now I find out that it is a common emotion. Thank you for the blog!

    - Suzanne

  • February 5, 2012 11:27 p.m.

    Thanks to all of you, and our Angela, our leader and teacher! Your support is with me...we all are doing our best even though we feel we all need to be perfect! So it seems, satisfaction of the caregiving long term for me has lead to a low self-esteem...I can't be patient, loving like I want to be all the time. What is the meaning long term for us? Maybe that we are the only ones they trust and want to be with, and even when we are not perfect, they continue loving us and express that to us? I feel my husband is emotionally stronger than me as he always has been since I met him 31 years ago. Maybe we are stronger than we feel? P.S. I attended my girlfriend's daughter's wedding last night. Oh, what an upper for me...reminded me of our romance, vows, and all the fun we have shared together. What good feelings came out! Blessings to each one of you...we're all sailing in unknown water but we have each other's support no matter what.

    - Dystonia Hat Lady

  • February 4, 2012 4:52 p.m.

    Rose, I know its hard to hear it when someone repeatedly says that they want to die. They have the right to the feeling, even though you get sick of hearing it. But leaving the room when you get sick of hearing it is only self-preservation. don't beat yourself up over it. It is also part of the grief process of coming to the terms of the fact that your are losing your mother in more than one way. You are still in the process of grieving over the loss of your dad. Read up on the process of grief or the 5 stages of grief might help. If it doesn't maybe talking with a professional of some sort will help. The last thing you need to be doing right now is beating yourself up for having normal feelings and reactions.

    - June

  • February 4, 2012 4:36 p.m.

    Negative self talk is one of the hardesst things to defeat in ordinary life, let alone living with someone with dementia. It causes us to beat ourselves up unnecessarily. But I wanted to share a breakthrough I had this past year with my husband. Due to several different circumstances my husband and I ended up essentially homeless so for about 8 months we lived without really having a home but living in rooms of peoples houses. The details aren't important what was important for me was that I was forced into a difficult situation of not having a place to escape from the constant questions, boredom etc from my husband but the great thing that happened over that time was that I learned to love my husband for the man he is now not the man I fell in love with. I no longer compare him to who he use to be so I no longer get as frustrated with him, I have more patience and I'm happy to be with him and miss it when I can't sit with him in the same room because of my own disabilities. This has made a huge difference in our relationship. I get less frustrated, angry and resentful. So as hard as those months were I am thankful for them because they have made such a difference in my life because it has given me the opportunity to feel less frustrated and angry with myself for not being the perfect caregiver.

    - June

  • February 3, 2012 6:24 p.m.

    Hi, I am so upset tonight, my mom keeps saying she wants to die, she prays that God takes her. I am so tired of hearing her say she wants to die since my dad died, 6/2/2011. She keeps saying that he left her and doesn't care about her. I know she is not normal and her thinking is not right but I am her daughter, taking care of everything her caregiver, have cancer, on chemo and she dose not know what I am going thru. Tonight I was so mad at her I left mad and now I am so upset. I don't know how to handle this problem. Any help would be so appreciated.

    - Rose

  • February 1, 2012 3:46 p.m.

    mother finally went into the hospital and then to a nursing home... she's on her second... I have had to stay away, this time. I learned. The biggest shock (besides the nursing home) was the adjustment AT home. For us, my husband and myself. I guess we had never actually THOUGHT about how it would be to not have mom in the house. It has been more of an adjustment than I ever would have imagined. Not being able to check on her was the hardest. It's been 2 months, now, and I still catch myself going towards her room. She is a high maintenance case. That is all I will say as I learned the mistake of posting online when your mother is captive somewhere. So I stay away. I have to. I can't bear her worst nightmare come true. Coping is HARSH. Staying positive has been on my brain out of desperation to escape the black hole of negativity. It's a battle of the mind. And it's exhausting! The profound change in our daily lives... who would have thought? It's actually worse than when my son left home. Who would have thought?

    - loving mother

  • January 31, 2012 10:15 p.m.

    Thanks for the reminder about positive self talk, I know it really does work but not easy when you are emotionally drained. I seem to have more problems with guilt then negative thinking. I take my husband who was diagnosed with Alz 11 years ago at age 58 to a daycare 2 days a week for 4hrs each day. The problem is he hates going there and I feel so bad taking him. I've looked into other adult daycare centers but the VA will not pay for them. I keep thinking he'll forget where he's going but that hasn't happened yet. Thanks for all of your comments and remember to hang in there and know you are not alone!

    - Barbara

  • January 30, 2012 11:46 a.m.

    After reading Donna's comment I wanted to share my recent experience. Hospice allowed me 5 days of respite and transported my 82 year old husband with dementia to a facility near our home. I was very burned out and slept for hours at a time. It was wonderful. I felt a bit guilty for that "out of sight, out of mind" feeling. Bill experienced a fall in Dec. which left him bedfast and incontinent much to his dismay and mine (tho he is easier to care for and keep track of). As the time drew near for the ambulance to deliver him back home, I realized how much I missed him - 58 years is a long marriage. Thank you Donna for the reminder - I will cherish the days we have left together all the more. He still remembers who I am most of the time. Hospice caregivers teach me so much - I am grateful.

    - Ginny

  • January 30, 2012 11:43 a.m.

    I fortunately live in an area that recognzes the needs of AD caregivers and through donations from two Trusts they have a created a non-profit organization to operate a wonderful facility and staff that takes our loved ones M-F for 4 or more hours a day to give us a needed respite from our caregiving duties. The cost is $40/day (4 nours) which is covered by LTC insurance and others. In addition, the staff is available at any time any day by phone or appointment to help with a problem I know that other communities have some thing similar so check around and contact the Alzheiemers Association as they have some sort of oversight of these facilites.Also, get a free copy of Coach Broyle's Playbook for Alzheimers 's Caregivers that I found very informative and would provide some guidance on issues raised here that are different from some of your responses and I have found his approach to reduce the stress.

    - Ecker

  • January 29, 2012 3:41 p.m.

    To all you caregivers out there: Love them while you can. My husband has passed away over a year ago from alzheimers and I would give anything to have him back with me to hug him many times and I would take care of him again if only I could have him with me. I took care of him for 8 to 10 yrs. Grief is so difficult when you have loved deeply.

    - Donna

  • January 28, 2012 11:23 a.m.

    Some good news this week. On Wednesday we saw our GP. She told me that Helen has a seriously high blood pressure problem which may be causing small strokes - a family trait for generations. This could become critical if not dealt with immediately. She also said that this may be the cause for memory loss and should not be handling her own finances at this point. Helen is still resisting, but so far has reluctantly kept up with the added medications and daily recording BP. It's a small step forward, but I am grateful for the medical support.

    - John

  • January 28, 2012 7:44 a.m.

    To Cindy about the father lsoing the remote. I just have to place mom's on a high shelf where It's reachable for me but out of sight for her. I suppose a second solution is to purchase a second one and allow him to keep it, but your backup will always keep you with one.

    - Shirley

  • January 28, 2012 7:35 a.m.

    Yes, I agree with the positive thinking. But when I'm so overwhemled that my nerves can't take anymore, and I do pedicare for mother, cutting her toenails and then I may go 2 weeks before I find energy and time to cut my toenails then reality reigns and it's not positive no matter what I try to tell myself. I know this is morbid but one last example is "yes the disease is responsible for her sticking a knife in my abdomen (not literally) but that does not alleviate the severe pain and damage that I experience dut to the incident.

    - Shirley

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