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  • With Mayo Clinic health education outreach coordinator

    Angela Lunde

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  • Alzheimer's blog

  • Dec. 13, 2011

    Gift for caregivers: Finding a place of contentment this season

    By Angela Lunde

33 comments posted

Alzheimer's Caregiving

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If I could give each of you a gift it would be of course a cure for Alzheimer's. But short of that it might be ten hours of peaceful sleep, a personal assistant, high quality and low cost respite care anytime and anyplace.

Alternatively, my gift might be an endless supply of patience, or the chance to escape back to a favorite time from your past. But even these are not gifts I can deliver on. So instead, my gift to you may be in simply knowing that you have at least a handful of (virtual) friends in our blog community who understand what you're going through and can empathize with your experience.

I often write about Rose because she's a caregiver I admire who offers profound insight. Recently she said, "Today I am feeling buoyant after talking with a wonderful friend and she totally 'gets it.' Being understood is fundamental to a sense of well being."

I wholeheartedly agree that being understood is essential to one's well being. And I believe it bestows a feeling of contentment as well. Contentment is hard to come by for many of us.

I struggle in feeling contentment and not wishing for something more, better, different. I sometimes strive for wanting to pad my ego with credentials, accomplishments, or just things — possibly it's the desire to impress, please, or be the best at what I do. Yet, to the folks I'm with who have Alzheimer's, none of this matters.

They might not remember my name much less the things I own, my accomplishments or credentials. Yet they do know if I'm a kind and compassionate person and a sincere listener. They sense if I'm patient, understanding and accepting. They respond more to the tone of my voice, my eye contact, body language, facial expressions and touch, than anything else about me. They feel trust and ease when I simply acknowledge what they're saying — most often this means validating the beliefs, feelings or realities that are uniquely theirs at that moment. Those of you who offer this therapeutic way of communication know what I'm talking about.

So, in this giving season, I reflect on the richness of what I (and maybe some of you) receive from persons with dementia. They draw from us those authentic qualities that are within, but often are buried beneath the rocks that fill our ego. When we remove the rocks, we connect with our authentic self, and we find that place of contentment. Peace and ease to each of you this holiday season.

"Contentment is not the fulfillment of what you want, it is the realization of how much you already have."

- Anonymous

33 comments posted

blog index

  • February 14, 2012 12:15 p.m.

    Robin - First of all I hope you will accept knowing that your feelings are normal. Many people find themselves upset, scared, feel guilty, are angry and so much more. I hope you will allow yourself to feel this grief and allow yourself to process those emotions. I am happy to see you on this blog because education can help. You have to be OKAY first before jumping in to be helpful. I strongly believe it is helpful to learn - there are great resources here and many books now. Then, when you are ready, you won't be surprised. Goodness, you have a lot going on. So, what came to mind was a PBS article: http://www.pbs.org/theforgetting/coping/frustrations.html In overcoming frustrations they reference a flight attendant safety presentation "....be sure to secure your own oxygen mask before helping anyone else." I think that applies here. Take the time you need - be honest with yourself about how you cope with all the stress going on overall - call yourself out on healthy/unhealthy coping. There are community/county/city/state support groups surrounding loved ones and for an array of support services. Allow yourself to be where you are. Each journey is so unique. All the best to you and your family.

    - Theresa

  • December 29, 2011 11:28 a.m.

    My Dad has Alzheimers and is thankfully cared for in a Memory Center where our Mom can visit him everday. In that he is over an hour and a half away and (while not an excuse but rather an explanation) I am currently overwhelmed with my husband dealing with Post-traumatic Stress disorder, foreclosure on our home and two adult teenagers with issues ie., no jobs available, etc..., I am tormented with my own inability to just call him. While the feelings of guilt are literally incapacitating, I cannot seem to overcome this major obstacle. I pray on it every day only to have another day go by without calling. I am at a loss and lossed.

    - Robin

  • December 26, 2011 10:05 a.m.

    Rita: My husband had a hernia operation too and it was tough as they do it on an outpatient basis plus the anesthesia seems to make the Alzheimers worse. He was terrible to the staff of the hospital and they couldn't wait to get rid of him. A friend helped me get him home and for three days it was extremely difficult but then he became a bit better.I hope your husband will rally at least as much as mine did.

    - Elise

  • December 22, 2011 8:29 a.m.

    I am a nurse and worked at nursing home for over 25 yrs. My husband is older than me. He was diagnosed about 2 yrs. ago with Alzheimer's 2yrs. ago. I know all the signs and symptoms to well from being a nurse. He has been still working full time until Dec.29th. He is then being forced to retire from his work. Due to him no longer being employed we are facing forecloseur of our home. I am very worried about him not having a routine of going to work anymore and his memory getting worse. Anyone have any suggestions?

    - diana

  • December 20, 2011 10:49 a.m.

    My friend, Eric Garcia, gave a gift to his mother, art historian Shifra Goldman - Music. He went to her bedside everyday for 6 years and since he is a great guitar player he played guitar for her everyday. This helped the two connect and was great therapy for both. Here is the album of the music he played for her. http://www.ericgarciamusic.com People in great distress have played this music and it somehow is deeply calming and healing.

    - Bob

  • December 19, 2011 10:24 a.m.

    This can be a very trying and diffulct time of year for all of us. We look back with fond memories and it is often too hard too handle. Instead let's look ahead to the one who's birthday we now celebrate and ask Him for his gifts of peace, hope, love and patience. And may God bless us all.

    - Joe

  • December 19, 2011 9:05 a.m.

    To feel not alone is a good feeling. Adjusting to the many changes day to day with my dad having had to go to a nursing home after my mom loving took care of him alone for the last few years. They will be married 65 years this month and its amazing to watch them and their love. Dad is different every day and that's sad and hard for me, but its the reality of this disease. He is here for a reason and I try to look at the blessings and the good caring people who are apart of his life and ours at the home. It's like a slow death but I have to allow my grief to show and move on, day by day amidst the many blessings. God bless.

    - Marianne

  • December 19, 2011 6:30 a.m.

    Thank you for your articles.God Bless You. I needed to read this one.I have faith, hope and prayer in my life.My survival. However, the last few days, I also have anger and more anger toward our "kids". None are coming down for Christmas, I am at peace with the Spiritual Christmas. Have no money for the "commercial Christmas". Probably why our 5 (his 3, my 2) "kids" & 10 gr. I handle everything alone."Its too hard on them".But now,hubby is going to have hernia repair surgery tomorrow. He's NOT a good candidate, but I was told because it's gotten so large and fallen into groin area - that this could "kill him before dementia takes him".Surgery is at 7:30 a.m. "That's too early" for them to be there for me or for their dad. Called his 7 remaining brothers and sisters and told them. Have not heard from anyone. Guess I'm on a pitty pot. I would think they'd care about their dad and brother, but if they can't make it for him, "what about me??My husband is the love of my life. I've been taking care of him for 6 yrs now, ALONE.Lots of beautiful memories & also mistakes.But yes, I have lost dreams, am a single spouse, no communication from him now, so am very lonely and grieve allot. Now, am scarred stiff for my poor husband. Not the surgery-anesthesia-throws him a bomb everytime ,coming out of it.That's it! No one can come to "hold my hand",I will be @ hosp alone. I am tired,sad and lonely.I KNOW Jes

    - Rita

  • December 18, 2011 2:46 p.m.

    How strange it is to hear that in the midst of such a terrible disease that one can find so much...faith,hope,comfort,love, and yes even joy. I take care of my mother fulltime at home. When I slowly began this journey with her many years ago we were so opposite from one another and usually didn't see eye to eye on things. Oh,I loved her, but emotionally it was like we were a world apart(not that we didn't try). This disease allowed me to mend and rebuild a relationship with my mother that I never had. It was very hard the first few years and I have many facial wrinkles and thinning hair to prove it but it's all been worth it. Through this disease I don't fret the small stuff, I have come to find "who I am"/ "my authentic self" and I like who I see. I am still learning and growing and the hardest thing for me to do is to reach out and ask for help. So this Christmas may you all find a moment of peace, atime of joy with your loved one, and reach out for a hand or to talk because you are never alone.

    - Therese

  • December 16, 2011 4:05 p.m.

    I identify with Elizabeth about her husband of 50 years or more and he was never supportive with a non-fulfilling relationship. My husband of almost 51 years is 78 and has been suffering with dementia for the last six years. I'm his only care giver. He was never one to include me or support me in anything. We never had any fun together or vacations, etc. His main concern was his work and his side of the family. I have tried as Elizabeth to have other interests to occupy my mind. I considered divorce about 12 years ago because I couldn't stand it anymore, but realized I could not support myself, so I have stuck it out. I'm not bitter but I try so hard to be kind, considerate, and patient. It has has truly been a lonely life. I'm a very friendly, outgoing person so I make friends easily but unfortunately have never been able to make friends with my husband--now it's impossible. I pray each day and read my Bible as well as other helpful books to help me cope with the rest of our lives. Our adult children live out of state--they understand but really aren't able to help much.

    - Mae

  • December 16, 2011 2:05 p.m.

    Being Bi-Lingual does not delay the onset of Alzheimer's in all people. My husband is bi-lingual and was diagnosed at the age of 49 with early onset AZ.

    - mel

  • December 16, 2011 1:20 p.m.

    Thank you for reminding me that the light of Christmas must come from within. I have been having difficulty finding the joy in this season. Instead of thinking about what I have lost, I will celebrate the memories my 90-year-old mother still has about Christmas and write them down as a gift for my eight-year-old granddaughter. I will follow the words of Cesare Pavese, "We do not remember days, we remember moments." I wish all of you joyful moments with your loved ones this holiday season.

    - Mary Lou

  • December 16, 2011 9:16 a.m.

    thank you Angela for all the gifts you want to give, would that you could!! Each day is not only a challenge, but a "gift" which totally depends on me. On thinking on my sweet, loving husband's delight when we shop; he sees so many, many things "he has never seen before"; and so, I look on these "new" things with his eyes and find much joy! My mantra has become "just do today! It's not tomorrow yet!"

    - Jan

  • December 15, 2011 10:51 p.m.

    A Gift of Thank You to you Angela.... for all the wonderful work you do, your kindness, and for all the words you "gift" to the caregivers! Thank you for the chance you give caregivers to share!

    - Catherine

  • December 15, 2011 8:59 p.m.

    I am writing as a caregiver and a daughter. I am thankful and so grateful for my mother and her ability to gracefully manage a situation. For years I was married to a man with a brain injury. We were in our early 30's when his brain injury occurred. My mother was and continues to be my support and stability. She knew what I needed before I knew I needed it. 10 years later I am divorced and helping my mom with her caregiving role for my father. I am so thankful to see her do what she can to take care of herself. She is doing yoga, visiting with friends, traveling, spending time with her children and grandchildren, all while loving my father as much as she has throughout her life. My mother still finds joy, shows her love for my father, accepts help from those that offer, releases herself from the guilt that can be overbearing,asks for help from those she needs it from and never forgets that even on a tough day the sun will come up and the light will shine if you allow it. Take time for yourself and show others you love them and care.

    - Sue

  • December 15, 2011 6:32 p.m.

    I feel grateful to my husband each time I waken him and he says "Good Morning, I Love you". My care givers feel so fortunate to work with him as he is so kind and sweet. I remember this during the times I change his depends and answer his persevrative questions. When he no long is able to tell me these things, then I will know what steps I need to take. Good wishes to all of you who wrote today.

    - Connie

  • December 15, 2011 6:11 p.m.

    My dad is in the late stages of Alzheimers now and what you wrote about their ability to draw out of us authentic qualities makes me grateful for every precious moment I have had with him while he has had this disease. This disease humbles me. Thank you for your kind words during these difficult days.

    - Michele

  • December 15, 2011 5:55 p.m.

    My dad is in the late stages of Alzheimers now and what you wrote about their ability to draw out of us authentic qualities makes me grateful for every precious moment I have had with him while he has had this disease. This disease humbles me. Thank you for your kind words during these difficult days.

    - Michele

  • December 15, 2011 5:43 p.m.

    That was an excellent blog - and my sentiments exactly. I can't believe how much I have grown spiritually and mentally in the past few years caring for my 82 year old husband. "A soft word turns away wrath" - so true - my words and my demeanor have such impact on how the day/night will go. He tries so hard to be "normal" - recently he went into "another world", babbling steadily and happily for over 40 hours in his chair and thru the night in bed - then blessed sleep for many hours - today - he remembers nothing about it, is placid and kind. Crazy thing this dementia process is. I do realize how blessed I am, more so because I hired an aide for 6 hours per week and she is perfect for him - just gives emotional support, jokes, checkers, so lively, patient, and caring. Yes, caregivers - pray and search for respite care at home - amazing what it will do for you. God bless you all. I live one day at a time and make the most of it. My life has changed, but so has his. After 58 years we're still in it for the long haul.....but I will seek out more help if needed.

    - Ginny

  • December 15, 2011 5:22 p.m.

    Thanks for the article. So often I have felt discontent with my life. But dealing with my husband's dementia has become a gift from God for me to realize the real value of a person is not what they can do for me but who they are to me. In his disability, my husband seems more valuable to me. And I have contentment knowing that I am blessed to be able to help him through this phase of his life.

    - Carolyn

  • December 15, 2011 5:09 p.m.

    I liked to talk to people about lifes daily problems and not have them try and solved them for you. Sometimes you just need to vent. Your not asking for answers just listen.

    - Georgia

  • December 15, 2011 4:16 p.m.

    As a caregiver, I have come to realize that they can't help or change what is going on, therefore, it is up to me to make the change, It is so much easier to comfort,to show them love, exchange with humor, anything and everything positive. It doesn't always work, but 95% of the time, it does. Just remember patience is golden.

    - Nancy

  • December 15, 2011 3:38 p.m.

    I cried when I read Hollie's message because I had felt the same way about my mother who passed away this past September. When friends comment about how "lucky" my mom was to have me by her side providing home care, I tell them that I was the lucky one because I got the chance to spend the time with my mother during her final years and can still smile when I think of the many wonderful moments we shared. As my mom lay in bed her final week and as some of my siblings drew near, I could only sit be her side and talk to her about what a wonderful life she had and how much I loved her, I found myself constantly and gently tapping my hand over her heart without even thinking. I realize now that I just wanted to feel that heart still pump, filled with all the love and joy she had brought to my life and it kept me focused. I saw a small sign for sale last week that said “My greatest blessings call me mom”. My mother had often said this to me in the past and as I tried to compose myself I thought that my “greatest blessing” called me daughter. It is a tough journey with Alzheimer’s that many of us undertake with someone, either by choice or obligation but, I found, if we focus on one loving memory to get us through the most difficult times, even a gentle touch or a smile, we can can provide dignity and love to someone who no longer knows us. I would go through it all again to have one more hug and kiss. I wish you all strength and hope that you find others to hel

    - Sandra

  • December 15, 2011 3:05 p.m.

    Oh my gosh. Thanks so much for this newsletter. What you wrote brought tears to my eyes because I see that dealing with my dad's Alzheimer's has brought out things in me that I did not know I possessed. Sure sometimes I fail and lose my patience and am no loving and kind like I should be, but I am doing more than I ever thought I could.. through the strength that God gives me... God bless you all this holiday season.

    - Kay

  • December 15, 2011 3:04 p.m.

    As I have written befgore I am caregiver for my wife. It is so hard and I loose patience. Just rcently was able to get caregiver to assist , but so very expensive. It leaves us with nothing. We are not on any programs , because we are a little above lin. May god grant this 84 yr old man peace so I can care for my wife. Merry Christmas to all and god bles

    - nick

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