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    Angela Lunde

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  • Alzheimer's blog

  • Nov. 29, 2011

    Caregiving and the holidays: Live in the present moment

    By Angela Lunde

54 comments posted

Alzheimer's Caregiving

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Sitting with a group of caregivers a couple months back, I witnessed a group of ducks gently floating on the water. On the surface, they (the caregivers) seemed calm and at ease. Yet, as they began to feel safe and connected to each other, several spoke up about their bleak, unrequested journey. After a short time, the illusion of the calm duck dissolved. Below the surface, it was apparent just how fast and furious they'd been paddling to keep up their unruffled exterior. On the inside, they were struggling.

Many caregivers hold these personal inner demons — certain thoughts about their own situation that can weigh extremely heavy and increase burden, and yet aren't apparent to others. For example, thoughts of denial come and go (as written about in the last blog posting). Some caregivers hold negative issues and thoughts over how the relationship was in the past. We often think that the relationship the caregiver has had with person they're caring for was a loving one, but this isn't always the case. There's also the history (good or maybe not so good) the caregiver has with the extended family. And almost all caregivers grapple with thoughts of fear over an unpredictable future.

Eckhart Tolle, a contemporary spiritual teacher, says, "Unease, anxiety, tension, stress, worry — all forms of fear — are caused by too much future, and not enough presence. Guilt, regret, resentment, grievances, sadness, bitterness, and all forms of nonforgiveness are caused by too much past and not enough presence."

Caregivers (all of us actually) often struggle by living with thoughts of too much future and too much past. Can caregivers find a way to lessen excess struggle (rid some personal demons) by living with greater presence? For some, this notion of living in the present can seem arbitrary and impractical. Yet, I'd like to offer one place to start — forgiveness.

Forgiveness can come in the form of absolving past grievances so as not to waste energy and spirit on situations that can't be changed. It can mean accepting (not necessarily liking) family members who don't live up to our expectations. It can mean extending forgiveness to ourselves by believing that we're doing the very best we can and allowing "good enough'' solutions to be the norm.

A life of greater presence can also include the practice of letting go — letting go of the fight to try and change what is beyond our control. The resolve to see things as they are and not use precious energy wishing things were different.

Caring for a loved one with dementia can strengthen or weaken us. It can be an opportunity for growth or a destructive passage. It can be a tool for discovering the joy of living in the moment and letting go of old baggage. It can teach us to prepare for the future without living in the future. And by living fully in the present we can be more compassionate to those around us and to ourselves.

The holiday season will likely challenge good intentions of living with presence. Try choosing not to dwell on the past, or worry (as much) about what the season may bring. As a way of practicing presence, give your full attention to what you're doing at this moment, which is reading this blog. Now, simply be still and listen to the sounds of your breath. This is living with greater presence.

If you think that's too spiritual, too analytical or just nonsense — perhaps, you were simply looking for some practical tips — well then, I don't want to disappoint. The Alzheimer's Association website has some holiday tips for caregivers.

"The secret for health for both mind and body is not to mourn for the past, worry about the future, or anticipate troubles but to live in the present moment wisely and earnestly."
- Buddha

54 comments posted

blog index

  • January 6, 2012 5:49 p.m.

    I just found this website and I can't tell you what it means to me so far. I will read further before I post but I have been 6 years of suffering.

    - carol

  • December 29, 2011 11:29 a.m.

    For those of you struggling with a loved one's uneasy sleep, speak to your md about trazadone---------very inexpensive. the drug's original purpose was an anti-depressant, it was okay. however, it was a wonderful sleep aid. i would suggest you talk to your md about it. no side effects. worth exploring. b

    - Willie

  • December 20, 2011 8:16 p.m.

    My mom has had ALZ for the past 3 years. The very best I ever did for her and myself was to find a perfect assisted living community. She is safe. I worried so much when she lived at home. Of course she wasn't happy to give up her home, but now she is settled in and making friends and is comfortable and safe. I have peace of mind. Her doctor was more worried about me and how I was holding up when I would take her for her appointments. Caregivers more often die before the loved one. It is so important to also remember to take care of ourselves so we can still function in society and be a part of the rest of the family. It is very easy to loose yourself while caregiving. There are wonderful places available to us. The peace of mind I have cannot be described. I do take a few days off and have me time. It's very important to maintain some sort of normalcy. And yes I carry the guilt with me when I do, but I do understand how important it is for my sanity. I'm 59 years old. Have grandchildren and a wonderful husband. I can't just give my life away to a desease that I cannot control or change. All you can do is the best you can do. Don't try to be a hero. I only have one life to live. Choices are very important. And balance is there once you find the right place for your loved one. Don't let it take over your life. Precous memories are still being made. I want to be a good person to everyone in my life. I have made a good choice ~ guilt free.

    - Deb

  • December 18, 2011 10:36 a.m.

    We have traveled to Florida other winters for a month -the cold takes so much out of my husband the warm weather helps. But this year he is more stressed in unfamiliar situations than last year and the car ride bothers him. I was going to take the autotrain, but now I don't know about traveling at all. Any idas??

    - Pat

  • December 15, 2011 8:18 p.m.

    This is my first time reading th e blog. I found so many comments that can be applied to my situation. Elizabeth commented on the fact that for some of us the past wasn't always the happiest with our mate that suffers from Alzheimer's. This is true for me also. I often let this fact overtake me when I visit him at the nursing home and.he is angry at everyone, including me. I must learn to live in the present and let go of thoughts of the past. I am not going to change him. I am absolutly powerless.

    - Elizabeth

  • December 14, 2011 1:33 p.m.

    Sylvia: You can correct your dh but I guarantee you it doesn't work. Our son was here with his daughter for a 6 day visit. My dh never could remember it was his son and granddaughter. When the memory goes, it is gone. He had seen the son just a year ago and spoken to him on the phone many times. Memories are just lost.

    - shirley

  • December 13, 2011 6:18 p.m.

    Not a Holiday question, but my step-daughter just spent a week with me and my husband . It was the first time she has seen him in 12 year. He keeps asking me about that nice relative of mine and keep telling him it was his daughter. Should I not correct him?

    - Sylvia

  • December 9, 2011 1:05 p.m.

    Marie, I am sure you weighed it all and that you are doing the right thing for all concerned. God Bless all the caregivers and those they care for.

    - Joe

  • December 9, 2011 7:08 a.m.

    Thanks Joe for your concern. I can only say I have been at this for over 5 years and none of the drugs helped. Aricept caused my husband to end up in the hospital as it affected his heart. Most of the Alzheimer experimental drugs have some serious side effects and death can be one of them. I feel we have to face that there is still no treatment that is effective. This drug (thorazine): 1) gives my husband quality to his life 2) allows him to manage 6 hours in eldercare 2 days a week 3) gives his wife/ caregiver quality of life as well 4) helps me to achieve my goal of keeping my husband at home.

    - Marie

  • December 8, 2011 11:56 a.m.

    This note is for Marie I just checked out Seroquel & Thorazine at Pubmed Health. Both drugs are considered dangerous for people with dementia.

    - Joe

  • December 7, 2011 8:41 a.m.

    I am interested in the message reporting seroquel was prescribed and caregiver found it to be beneficial. I have been struggling with my husband's behavior and sleepless nights. He was prescribed Thorazine 6 weeks ago and has had a dramatic improvement in daytime interactions and especially sleeps thru the night. We had a wonderful Thanksgiving with the family.

    - Marie

  • December 6, 2011 10:50 p.m.

    I had had my husband in a care center and took him out because of his family not thinking anything was wrong with him. I have taken care of him for 5 months now, day by day there is a new need and can't do one more thing. He only feeds himself and talks, questions ect every minute of the day. I finally had a light bulb moment when the doctor and I had a long talk. I realized the Dr. is right. My health is going down hill, pulled rotator cuff and back, no sleep, doing it all. I can't do it all anymore, I am only human,63 My husband will be better off in a place that can meet his needs 24/7. He will be with other people and will have activities to stimulate him. There is so much more I would like to say, but somehow it is NOW, so clear as what to do, I know he is not the man I use to know,and he may actually bond I believe to whomever is taking care of him. He will be more active , which will be good also. I know now that I have given ALL that I can give to him for help here at home, now I can help him by letting professionals take over. I have had guilt for so long, but now I know he is at a point to where he will settle in eventually. I know he will want to come home, whenever I see him, that is normal in this situation, but I will not feel guilty anymore. I love him, and want the BEST of care for him. The guilt that I will have is hidding the fact through xmas as where he will live in 2012. That is my guilt,that I can't be honest with him now. Just one more xmas.

    - Donna

  • December 5, 2011 7:38 p.m.

    Hi to all, I have been my father;s full time carer for the past 5.5years. Yes, it is a very hard road to travel, I just wanted to say to those who are struggling with sleep deprivation that I also was having lots of trouble with my dad's sleep patterns. This went on for a very long time, wearing out my husband and I. I consulted dad's doctor about this issue and he prescribed a mild sleeping tablet. This solved the problem, but we have to change the dosage at our discrepancy. A daily dose made him zombie like, but now we give it to him every second day, and he is much brighter. It sometimes takes a little while for him to fall asleep when dosage is missed, but so much brighter without it. There is free home help available for high care patients. Just call one of the aged care organisations in your area. May we all be blessed with the patience we need. God be with you all as we travel this road.

    - Rita

  • December 5, 2011 6:43 p.m.

    I have been caring for my mother's needs for the past 4 years now when she was first diagnosed with AD. She is now 71 years of age. 2 years ago we moved her from her home to a retirement center. I hired limited help of a caregiver. I had hoped that she would be able to remain at the retirement center for several years, but this did not last and I moved her to an adult residential care facility on Saturday. This was mainly for her safety as she started to wonder and of course her needs increased. I still feel guilt at times that I am not doing enough, but I know I am doing the best I can. We spend a lot of time together and I cherish the time we have. She is my mom and best friend. The facilities I have research and found are FABULOUS. The people/caregivers are INCREDIBLE. I wouldn't change a thing. It's a difficult road, but I try to stay in the moment. Reading this article and the accompanying blogs is very helpful. Thank you all!

    - Beckie

  • December 4, 2011 4:20 p.m.

    Dec. 4, 4:30 p.m. Another day of the same, a husband with AD who can be nice, or be very mean. Today was a mean day. I have caring for him for 3 years, but think he was experiencing AD long before. He was adept to doing everything, and now he can do nothing. I make all the decisions, wait on him for everything. Tell him when to get showers, etc. etc., but am lucky he still is able to do personal grooming by himself if I remind him. I tried Adult Day Care and it was not good for him. Hoping to get some outside help just to get out of the house a day or so each week. He wants me by his side every minute, wakes me up wee hours of the morning, is dressed and thinks it is time to get up. I am getting very tired, but don't know what to do about it. Afraid my health will suffer if I don't do something. The worst is yet to come, as I notice by reading these blogs. I only pray that God will take care of us and that He will give me the patience I need.

    - Betty

  • December 3, 2011 6:23 p.m.

    Your blog is very helpful. I was the caregiver of my spouse of 18 years when I needed to put him in a secure skilled nursing facility because of his primary progressive aphasia and dementia. While my step-children were very close to me prior to placing him in the facility; my life turned upside down with them when this placement was recommended. It has taken me a full year to forget the past and dwell on the present in that I cannot change what has happened to him and my life because of it. Because of our differences in opinion, the probate judge has given guardianship/conservatorship to the county Public Administrator. I have finally forgiven the grown children because I know their denial of their father's illness is the only way they can deal with it. I just need to make the best of each day my husband is living and try to laugh with him rather than remember the strong, self-made man he was when we married. I only hope his children come to that realization some day. And you are so right; it is not easy and it tears at your heart every day.

    - Nancy

  • December 3, 2011 6:13 p.m.

    These words are all very helpful. I find that when there are times of strife with my husband, my emotions go astray, especially when he has middle of the night confusion. I am awakened from sleep, all I want is for him to go back to sleep and I can go back also. I do use the sofly patting and quite talk to get him settled, sometimes it is not easy.

    - Connie

  • December 3, 2011 2:57 a.m.

    In my post - December 3, 2011 2:42 a.m - you may have to copy the web link and then paste it in the browse. I guess thats what they call it. Still up with my little lady, thrilled that she is still here for the moment. There may be a a very short commercial before the video - A Letter From Mom & Dad = A Parent's LOVE: http://www.youtube.com/watch?v=g0sihX98mAw&feature=related

    - No name given

  • December 3, 2011 2:42 a.m.

    Thank God that you can be a caregiver instead of the dependent one. One day it may be you in need of care - give it like you would want it given to you. Hope this brief video speaks to a few of you precious caregivers: http://www.youtube.com/watch?v=g0sihX98mAw&feature=related

    - Gary

  • December 2, 2011 10:27 p.m.

    Right on Ella. Like you, I am taking care of my husband at home. He is not yet bedridden, but taking care of him is physically demanding. I too pay people so that I can get out of the house for some time everyday. But for being able to pay help, I would not have the emotional wherewithal to keep going. He no doubts benefits from my taking space from caring for him. Since getting help,I no longer feel trapped and angry and I want to be with him when I am with him. To all others trying to deal, put energy into finding help ...get help somehow... pay for it, insist on it from family members,use daycare.. Going it alone is not good for you or your loved one.

    - Linnie

  • December 2, 2011 6:25 p.m.

    It's not living in the past ... it's wondering/worrying about the future. You can't just forget about that - it will come. I am looking for in-home health care, of course that would help but I want a good person and it's so expensive. I try to live in the present and that helps but someone needs to plan for the future.

    - kathy

  • December 2, 2011 4:12 p.m.

    I am having an inner battle with being a caregiver. The caregiver that is helping me gets angry sovery much

    - nick

  • December 2, 2011 9:32 a.m.

    Angela, Your comments are so very helpful to me and our family. We thank you and wish you a very Merry Christmas.

    - Kathy

  • December 2, 2011 8:49 a.m.

    To Cindy, Millie and Bonnie: Thank you. I can see that I am not the only one. Your acknowledgement of my post was such an encouragement. I won't speak in platitudes because I hate it when people do that to me and that is why I was so frank in my post. I may not know you, but I will be speaking your name in prayer because I share your pain.And I will believe with you for better days, strength that is greater than our own, and hope that will speak louder than the screams in the pillow.

    - Darlene

  • December 2, 2011 8:43 a.m.

    One holiday gift many caregivers can give to themselves is dealing better with their inner feelings of guilt. Too often, many of us refuse to accept that we need respite time ... 'me' time ... out of the house. In my weekly spouse support group as well as in my online spouse support group (www.thealzheimerspouse.com), experienced caregivers are always saying how they should have sought help sooner rather than later. Hiring a part-time or full-time companion or home health care aide, or placement of a loved one in an assisted living facility, goes against the grain for many of us. We feel guilty about leaving our loved ones in the care of others. But we shouldn't feel that way. I've felt guilty about going golfing and leaving my wife ... who is at moderate stage AD and cannot be left alone anymore ... with a hired aide or companion. So I haven't gone golfing in 2 years. But next spring I plan to hire a companion so I can go golfing a few times each month. Is this a selfish act on my part? I used to think so. But I'm now starting to feel that getting out of the house by myself to do something I enjoy will make me less stressed and, therefore, a better caregiver. So that is my holiday gift to myself this month ... shedding my guilt to allow myself to hire an occasional companion next year!

    - Allan

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