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With the holiday season well under way, you can find a great deal of information on the web about ways to manage the season when you have a loved one with dementia, including on this site.
The truth though is that many of us enter the holiday season with a mixed bag of memories and emotions. Rituals, familiar food and smells, songs and decorations all stimulate memories of people and holidays past. The season may loom particularly heavy for those who have a loved one with Alzheimer's.
It's common to experience feelings of loss for "the way things used to be," or to have a sense of guilt about what we think we should do, or how we think we should feel. If you followed my blog last year at this time, you may recall the themes I advocate most during the holidays: First, adjust your expectations, and second keep it simple. I want to add one more this year — take good care of yourself.
From now until the end of the year, consider making a plan to take at least 15 minutes a day to turn your attention inward and focus your mind on the present moment — easier said than done I know. Yet, studies have shown that meditation or mindfulness can be helpful in stopping ruminations over things that cause stress (such as caregiving for someone with a dementing illness and/or the holidays). A meditation practice helps people keep from dwelling on negative thoughts, gives you a mental break and a way to gain perspective and a greater sense of contentment.
Set aside 15 minutes when you are least likely to be interrupted. You may simply sit on the floor or in a comfortable chair with your eyes closed and focus on your breath (noting the sounds, temperature and rhythm) or listen to calming music. You could take a bath in a candlelit room or take a walk outdoors — anything to settle the mind from thoughts of the past and future. I heard someone once refer to meditation for caregivers as "refueling your caring center."
Please share your thoughts. Peaceful holidays to all.
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This year it was buying presents for the family that caused problems. Wanting to purchase the same gifts again and again from catalogues became almost an obsession. "It's what we did last year," was the often repeated and mistaken message since mid-October, even after the proposed gifts had arrived and were in the cupboard.
Special holiday foods and a massive party were also disruptive issues in our seniors residence. Formerly an excellent cook but no longer with either the ability or equipment to do what once was normal also distressed Helen nearly two years after diagnosis.
We are looking forward to quiet dinner with our daughter and family sometime during the holiday. Sadly the residence diet is excellent but not to her simpler tastes.
Thanks for counsel to take care of ourselves.
I play gin rummy on my ipad for 1/2 hour in the afternoon lying in bed with my comforting heating pad!!
I just wish that during the holidays friends and relatives would take into consideration the inability to travel, to have too many guests, to shop, disrupt routines make it impossible to enjoy the season. We made a conscious decision not to travel with mom on thanksgiving, instead having a quiet dinner at home. It was so peaceful. Not fighting traffic. Not having to lose sleep having her in unfamiliar surroundings. I recommend it. Less is definitely more when caregiving during the holidays. Peace at all costs.
One way to take care of yourself during the Holidays and every day is to have no expectations. If something good happens, enjoy it in the moment. If something less than happy occurs, endure it in the moment. If I have expectations, I am usually disappointed--this I do not need and is no way to take of oneself!
I wish that some people would respond to some of the posts, otherwise it feels like I am writing into thin air. Granted, as the blogger stated, writing, in and of itself is therapeutic and helpful. This I know. How am I doing, better than I expected, and actually because I lowered my expectations lately, I am finding life somewhat easier, especially around the holiday time. For example, I no longer get upset when my uncle wishes me a merry christmas, especially when we do not celebrate that holiday as we are jewish. But I know that he loves the holiday spirit, especially seeing the trees, decorations etc. SO, I now take it as he says it and acknowledges his feelings. I wished him happy chanuakah so he knows that chanukah is our holiday. But when he talks about christmas -- i don't dispute with him, i do not say to him, ... we do not celebrate xmas, i merely say happy holidays etc.
so this has helped me as i do not engage him in a discussion that might upset him. it is still hard for me but i do not have those bad feelings as much as i used to. Overall., he is happy . i miss the way he used to be, but am learning to accept him for who he is now.
I'd love to hear how everyone made it through the holidays...any new advice? It's so stressful, but in a way, it's good to have it over.
My mother, Mary has ALZ. I have been taking care of her for 7 hrs. It has been a long and difficult road. I just recently put her in assisted living. She has adjusted fine and it seems to be a very good place. I know this because of how she acts. They also listen to me and follow through. In the process of taking care of her and a full time job, my health took a dive. I am only 51 and have severe diverticulus. I am glad I got more so I could take of myself too. Please remember to pay attention to yourself too or you end up paying for it like me. Who did not listen to her body's health signals. It was all about taking care of mom.
I too take care of my mother who has stage 5 alzheimers. She's been living with my husband and I for 2 years. My father passed away 2 years ago in Oct. He ask me to take care of her and I have been. The problem is that my patience runs thin alot, she's in complete denial to anything we say and there's no getting thru to her. In the beginning, things went well, but as time goes by, she seems to get worse. Our dr. says I should have already put her in a nursing home, but I've tried my best to keep her here. I do have a sister and she can't and won't help. I also have a brother, but he lives with someone else and no job. I'm considering starting the paperwork come the first of the year to get her qualified for Medicaid. I know once I start this, I can't go back. I have my own health issues, including bladder cancer and MS and I know from past experience, if I don't slow down, I will be so run down, I won't be no help to anyone. I need a major break from it all, try and get my life back to normal if there's such a thing. I do get out of the house at times, but that's not enough for me. I love my mother and always will and I want what's best for her and me.
I live alone, having been divorced for quite a while. I have an uncle age 90 who has dementia, and seems to have lost his long term as well as short term memory. He lives at home and has a homecare worker for most of the day, but he stays by himself at night. I live in same apt bldg as he does and check in on him often, and manage some financial and medical issues. He and I were pretty close when he was younger and I miss that closeness. COnversations are so simple and non substantial that it is very frustrating for me. HE does not do much during the day, but eat, look forward to trips outside in his wheelchair as his homecare worker takes him out. WHen we visit with one another, he either doses off or sits an hardly says anything while the homecare worker yaks away about some various stuff that does not even relate to him at all. Yet, she is so good with him. I try to redirect her and or involve him in some kind of conversation but he does not show any interest. He sometimes says to me -- what is there to talk about. Even showing pictures of present or past do not interest him and he merely sits and watches tv even while eating -- it is a habit and it would bother him to turn tv off. Even when I turn off tv in order to try to have a conversation, he does not engage himself. and doses off. Especially during the holiday season, I feel so alone. I do not have many friends. and not any other family members who show any interest in me or uncle. What do I do other than meditate?
Having lost my husband of 23 years to prostate cancer (a 15 year battle) in mid-September I'm REALLY struggling with the holiday season upon us... Having lost my Father 7 years ago to prostate cancer at Christmas time I've learned to force myself 'to celebrate' - I've got a two foot artificial tree with lights and ornaments to commemorate the two of them on my coffee table (stratigically placed opposite "my" chair) - CD's on the stereo that I find comforting and I think I'm doing a great job of 'getting through' the season thus far... Be kind to yourself, focus on getting through one day (sometimes, one hour) at a time and I think we'll survive... Our loved ones would be very upset to think that their passing could or would affect our 'celebration' of the seasons, therefore even tho we're STILL taking care of them by 'celebrating' - we're taking care of ourselves in the same time... God Bless - and make the most of a Very Merry Christmas and a HEALTHY Happy New Year !!!
Phillip... I understand what you are going through. My husband started 12 years ago. He was first diagnosed with Alzheimers but it didn't quite fit the symptoms, it was changed two years later to FTD. He is in a daycare during the day. It's a difficult situation but you have to take some time for yourself. It's vital for you to be able to continue to cope with everything.
For Rosemary.... Get him out of that place asap...bring him back home and find a good caregiver...good luck
My husband has pneumonia from being on the floor awhile falling off the toilet in a Memory Unit. I am more stressed than ever trying to get the care I was giving to take place there. A bad situation for both of us. Help.
I care for my sister with early stage Alzheimer's. She is an adult with Down's Syndrome and now this. She started Aricept about a year ago. Sometimes she is better than others, but compounded with the Down's it is very hard to get a good read on symptoms with her. If there is anything to educate myself on sypmtoms at different stages, I would be grateful to know where to find material. I am told that 100% of people with Down's Syndrome get Alzheimer's, so I was hoping there was something out there to guide me. I feel like I am "Fishin' in the Dark," like that old song. Thank you in advance for any help you can give me.
Sharon I know what you are feeling. I lost my mom the 26th of Sept.2010 and my dad is in the early stages. I don't know if I can get thru this Christmas.
my wife, 63 years old, has frontolobe dementia, diagnosed 5 years ago, symptoms started about 9 years ago. She attends an adult day care M-F, 8:30-5:00, each week. this facility saved me. I do not find or take time to meditate or even relax. Much help from our church family. There is no way to prepare youself for caregiving for a person with early dementia. The docs and psychologist treated her for depression for 5 years, before an accurate diagnosis... No long term care insurance now available. Many helpful friends, but still feel alone.
For Earnest and Richard...please try and enlist the help of a good caregiver...it will be less stressful;.............
Richard: I have the feeling that I am starting down that same path. My heart goes out to you. Dependency is terribly hard on the one that is depended upon.
I will pray for your strength as well as my own.
myself and my caregiver no 2 have been taking care of a wonderful lady with Alzheimers for the last 2 years, and she is doing so well...she lives in her own home...best place for her, take good care of her..we even take her dancing...and prepare her good nutritious food...it is fortunate that the family can afford to keep it going...in my experiences if the person is taken care of in their own home they do much better............in a facility you are in a secure unit and do not get a chance to get out everyday and enjoy whats left of life for her..We live in Gulfport Florida .we love our work........and will continue to care for our Rosemary.... until her last days
We provide free Power point in-services, specifically dealing with stress and the holidays and other topics for NCCDP Alzheimer's demenetia staff education week and it is available at www.nccdp.org from Nov to Mar
National Council of Certified Dementia Practitioners
Sandra Stimson Exeuctive Director
My Aunt who has early stages Alzheimers has been in an assisted living facility for just over a year now and still thinks she has been there just 2 days. I think the holidays are actually a better time for folks living there as they seem to have more fun things going on such as X-Mas light tours, tree trimming etc. It's taken about a year for me and my family to adjust to it all even with her being in what we think is the best place we could find. I try not to think about her getting worse, but instead focus on the here and now for my own sanity. Merry Christmas and God Bless all of you in this same situation.
good advice for everyone
Sharon, I, too, lost my mom after 5 yrs of taking care of her. My heart goes out to you as there is always something that triggers the pain of the loss. I now have the care of my husband who has dementia/wears Depends but still wants to drive the car. My work is cut out for me and I must move on emotionally as my husband is needing every bit of my energy and understanding for this final stage of his life. Mom's care was my warm-up. You will survive and you will be stronger!
I am having a particularly difficult time this year. I have made the decision, in consultation with my wife's gerontologist, that it is time to place her in a assisted living facility. I find that I am very angry, i suppose it is because I am forced into this situation over which I have no control. I am very tired, emotionally drained and know this is necessary but I don't know how my wife is going to react. She is so very attached to me and not necessarily in a healthy way, but I dread what I must do.
Sharon, My heart goes out to you. I lost my mom in 2008 and it is so hard. I now take care of my father who has Alzheimer's and he doesn't understand why she's not around. I have to tell him everytime he asks 'Have you seen mom?' that she is gone so it's like losing her over and over for him.
Lean on God...he will carry you through.
I pray that he make his presence known for you and brings you peace and comfort during this Christmas season.
To Kirsten, try making it his idea to get cleaned up, help him by laying all his cleaning stuff out with clean clothes and cut the water on the shower. When he protest, just say your the one who wanted to do this. Taking a bath seems to be a big deal, they don't realize how long its been or how bad they need one. I try to remember that my mom can only see whats wrong with her in her mind, getting her to the problems at hand have to be tricked. Try not to make it a big deal. Its ok I do this all the time. Or thats what I'm here for. everything we do is your idea. Your the boss.
Does anyone have a suggestion to help someone with mid- stage alzheimers to use the bathroom? He wears a depends, but does not understand when he has a bm or has soaked through his depends. He will not let anyone help him change and puts up much resistance. He does not even understand that he has soild himself. Any tips would be so appreciated!!
Hi Angela, how does one contact you? Would you please email me for a question? Armen Hareyan www.emaxhealth.com my email is: firstname.lastname@example.org
Sharon, my heart goes out to you. I share your feelings of loss.. my Mom and Dad are both gone.. I miss them very much.
May you get through the season with support and care from friends and family.
I would give anything to have my caregiving days back. lost my mother in Feb 2010. she had Leukemia for 7 years. First Holidays without her. Just trying to get through them. we lived together for 15 years. Huge loss and huge whole in my heart. Can't listen to Christmas music very well so I try to avoid it. I was very stressed in the end but I would do it all over for my sweet mother.
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