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We know that the stresses involved with caregiving tend to magnify during the this time of year. We urge you to look for the positive in your lives; the small gifts your loved one gives you each day. Be this gift a smile, a giggle, or a rare intelligible word, something to be so grateful for!
We ask you take time for you this holiday season - to give yourself a gift, a respite. Call a friend and go to a movie, lunch, or shopping. Go to a store that has a Santa. Watch the glee in the faces of the children as they climb into the lap of the Jolly Fellow and whisper their most serious wants for under the Christmas tree. Contact friends and family that you have not heard from in a very long time and reconnect with them. Find a good book and curl up on the couch for a minute of quiet time with a warm cup of tea!
It is our sincere hope that you and yours will have a very safe and happy Holiday Season!
Karen, Kevin, Micki, and Linda
Prepping for the Holidays
For most families, holidays are filled with opportunities for togetherness, sharing, laughter and memories. But for families coping with Alzheimer's disease, holidays also can be filled with stress, disappointment and sadness.
One of the first things you should do is to realize that the holidays may not be the same as in the past and adjust your expectations accordingly. No one, including yourself, should expect you to maintain every family tradition or event. Give yourself permission to do only what you can reasonably manage. If you've always invited fifteen people to your home for a seven-course dinner, consider inviting five people for a more simple meal. Ask others to bring "potluck" dishes or host the meal at their home. Those close to you and your loved one may welcome this opportunity to help.
To avoid unpleasant surprises or hurt feelings, you may want to discuss holiday celebrations with relatives and close friends ahead of time. Make sure that all family members understand the situation and have realistic expectations for their visit. You may wish to familiarize them with the situation in advance by calling or sending a letter that makes these points:
"While we're looking forward to your visit, we thought it might be helpful if you understood our current situation before you arrive. Because Mom sometimes has problems remembering and thinking clearly, her behavior is a little unpredictable. Please understand that she may repeat conversations and may not remember who you are or confuse you with someone else. Please don't feel offended by this. She appreciates your company and so do I."
Enjoy the moments when meaningful communication and interaction occur, however short and infrequent they may be. If your loved one can engage in conversation with a grandchild for only two minutes, treasure those two minutes rather than measuring it against the entire four-hour holiday gathering. Involve the person with Alzheimer's disease throughout all stages of holiday preparation. Pick manageable activities: wrapping gifts, setting the table, or preparing simple foods such as appetizers. Avoid more complicated and potentially frightening activities such as lighting a menorah or hanging blinking lights.
"A holiday is still a holiday whether it is celebrated with your loved one at home or in a residential care facility," says Anna Ortigara, vice president of program development for Life Services Network which operates residential care facilities. "The most important thing is to spend time together, enjoying the moment for what it is."
Families should carefully evaluate whether persons with Alzheimer's disease should spend the holiday in their usual environment or elsewhere. Some people do not deal with change very well, and spending the holiday away from home or their facility may not be pleasurable for them. If the person with Alzheimer's disease must stay at a residential care facility, think of ways to celebrate the holiday together. Visiting a loved one in a residential care facility can be a wonderful experience for everyone. Bring a favorite holiday food or sing holiday songs with other residents to make the day comfortable and special.
Other ways you can make the holidays enjoyable:
Maintain your loved one's normal routine as much as possible in order to limit disruption and confusion. For example, if the person goes on a daily walk try to continue that practice even on the holiday. Build on past traditions and memories and experiment with new holiday traditions such as renting seasonal videos that the less active person may enjoy. Sign your loved one's name to some of the presents you give. This will help the person contribute to the holiday celebration. During the holiday gathering be alert for signs of agitation and frustration in your loved one. Do not seat him or her in the middle of a noisy room as it may result in over-stimulation and agitation. Give yourself a gift:
Caregiving is a labor of love. Those who provide care to others often overlook their own needs believing that they must take a backseat to their loved ones. They can grow depressed, lonely, and frustrated particularly around the holidays. Do you get enough exercise, watch your own nutrition, or get enough sleep? You will be a better, stronger caregiver if you don't neglect your own needs. When friends or family members ask you what you want for a gift suggest a gift certificate for a local restaurant, dry cleaner, laundromat, or cleaning service. If you don't receive what you'd like for the holidays, treat yourself to whatever you'd like.
Ask for help and support. Develop a list of tasks that need to be done so that when someone asks, "What can I do to help?" you can respond with a specific idea. Close friends and family will appreciate the opportunity to help you in this difficult situation.
Adapted from The Alzheimer's Association Newsletter Advances, Vol. 20 No.4 Winter 2001
Beanie Baby for Alzheimer's Disease
A reader sent us the following letter (adapted) with her wonderful idea. We think that if everyone would contact TY, the Beanie Baby company, we might one day have a Beanie Baby to let everyone know that we still have so many suffering with Alzheimer's Disease or other Dementias.
I have this wonderful idea while I was having dinner with a friend. She works at a store where there sell souvenirs and the 'TY' beannie babies. She mentioned to me that someone wrote a letter to Ty asking about a bear for the breast cancer patient with the symbol of the pink bow. I will attach a letter to present to Ty in regards to a bear directed for Alzheimer's disease.
Dear Ty, I hope you will consider my thoughts for a special Beanie Bear. My mother is stricken with Alzheimer's; it is a devastating disease. She is in a nursing home where they specialize in Alzheimer's patients. I visit her almost daily because I can't care for her in my home. These type of patients love stuffed animals and cling to them. The purple ribbon is the color for Alzheimer's and I would love to see a Ty bear and maybe call the bear "Ribbon". I belong to a wonderful website called TheRibbon.com. I think a lot of these bears could be sold. Would you please think about this idea and know that you would be helping so many of us who are caretakers of those with this terrible disease. Thank you and I can help with a verse to go with the bear since this is a part of my life daily. I personally would love to see everyone at my mom's home cuddling one of these bears.
Just a quick note
to let y'all know that The Gathering Place @ TheRibbon.com will
not be hosted on December 24, 25 and 31, 2003 and January 1,
2004. Our hosts work incredibly hard all year long and it
is only fitting they have a few nights to enjoy their
families! If you wish to stop by, please do, but there will
be no host on duty.
P.S.: Leeza's Place and The Gathering Place @ TheRibbon.com are working in conjunction with each other! After many months of discussions, our first Leeza's visitors graced our doors on December 8, 2003. I am so thrilled to be associated with Ms. Gibbons and her wonderful staff at Leeza's Place.
A Very Special Place to Work
I am so blessed to be working at such a fine facility. I am going to tell you a bit about it. I did not know that such places were available in my caregiving years at home. I think this could be of tremendous value to many who are caregiving.
In Nashville Rehabilitatioon Hospital's continuous effort to meet the needs of Davidson County and Middle Tennessee, we offer a special service for senior adults.
BRIDGES is a 12-bed inpatient program which provides psychiatric, diagnostic and treatment services for patients who are facing the struggles of the aging process. The program focuses on the changes patients experience in their emotional and behavioral health. The problems include:
Referrals can come from physicians, healthcare professionals, nursing care facilities, retirement centers or family members. A physician referral is not necessary for an in-home assessment to be performed. A free confidential assessment can be scheduled at no cost in the person's home, at the hospital, or in a nursing home. If admission is appropriate, it will be done under the supervision of a licensed staff psychiatrist.
For more information, please call 615.650.2548 or 1.800.227.3708, ext. 2310. We are available 24 hours a day, seven days a week.
Supporting the Whole Family
The philosophy of BRIDGES depends on the involvement of family in the patient's recovery. In groups and individually, we support and educate the family on their loved one's treatment and recovery.
We recognize that long-term success of every patient relies not only on treatment received at BRIDGES, but also the quality of continuing care after discharge. We will work with the individual and family to determine the most appropriate plan to meet the individual needs and strengths.
What Is Love?.....
This has been sent in by several people and we are happy to include it.
It was a busy morning, approximately 8:30 am, when an elderly gentleman, in his 80's, came in to have sutures removed from his thumb. He stated that he was in a hurry as he had an appointment at 9:00 am. I took his vital signs and had him take a seat, knowing it would be over an hour before someone would to able to see him.
I saw him looking at his watch and decided, since I was not busy with another patient, I would evaluate his wound. Upon exam, I saw that it was well healed, so I talked to one of the doctors, got the needed supplies to remove his sutures and redress his wound.
While taking care of his wound, we began to engage in conversation. I asked him if he had a doctor's appointment this morning, as he was in such a hurry. The gentleman told me no, that he needed to go to the nursing home to eat breakfast with his wife.
I then inquired as to her health. He told me that she had been there for a while and that she was a victim of Alzheimer Disease.
As we talked, and I finished dressing his wound, I asked if she would be worried if he was a bit late.
He replied that she no longer knew who he was, that she had not recognized him in five years now.
I was surprised, and asked him. "And you still go every morning, even though she doesn't know who you are?"
He smiled as he patted my hand and said. "She doesn't know me, but I still know who she is."
I had to hold back tears as he left. I had goose bumps on my arm, and I thought, "That is the kind of love I want in my life."
Have never written in before, but just had to after reading this most recent issue. The facility in which you are now working is SO FORTUNATE to have you with them. Your kind of compassion and experience can't be taught. You go girl!
This issue of The Ribbon also deeply touched me...each and every section!
Thank you so much for the wonderful work you and Karen (and others, I'm sure) do. Who cares if it is a few days late each month...it is worth waiting for! I am the clinical nurse manager of a dementia unit in a nursing home in Flroida - it is my passion to be there. I live with my parents (yes, I with them, not them with me), both of whom have dementia at different stages. It is their earnest wish to stay in their home and I hope to do that as long as is humanly possible, but in 10 days I am having a biopsy for a very suspicious area in my left breast, found only by mammogram. It is SO IMPORTANT for caregivers to take care of themselves...don't let anything get behind. Every day is precious...
I really related to your story, "A Different Kind of Grieving." Perhaps that explains why I wasn't devastated when my mom died, after being in a nursing home 9 years with Alzheimer's and with me before that. I felt a sense of loss but it was a relief to know Mother was at peace.
I'd lost the mother I knew many years before, but I'd also grown to love the person she had become.
As someone said to me when Mother died, "I won't say I'm sorry, Mary, because your mom is at peace. But I know there will be a hole in your life." There was because my grandchildren and I no longer had her to visit at the nursing home.
I asked people to celebrate Mother's life instead of grieve when they came to the funeral....to remember the lady she had been and what she'd given to inspire and encourage others...even during the Alzheimer's years.
Mary Emma Allen
Happy Holidays to All
Jamie and Karen