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Follow-up to Show Some Valentine Love to Caregivers
Last week I wrote a post, Show Some Valentine Love to Caregivers. Today I want to share my efforts to do just that. I chose two sisters, Jocelyn and Stephanie.
Jocelyn is a member of my church. She has a young teenage son who was born with a spinal birth defect; he is confined to a wheel chair. For the past seven or eight years, I have watched Jocelyn and her sister Stephanie take care of Landon. I’ve watched them take him to children’s choir practice and other youth events at church. They have been dedicated to having him function as a normal child while they are both active in several ministries.
In an effort to bring a some attention to caregiving, I asked for permission to do a 5 minute presentation during our 10:45 AM church service on Sunday morning.
- First I asked how many family caregivers we had in the congregation (about seven people raised their hands)
- Next I told people about my web site and the challenge that I had given about showing some love to family caregivers
- I explained that caregiving is stressful and demanding
- Then I said I wanted to celebrate two family caregivers, Stephanie and Jocelyn
Jocelyn and Stephanie were totally unaware that they would be celebrated and the acknowledgement was really a surprise because my relationship with them is very casual. Pastor called it an Oprah moment because they started crying and then people in the congregation started crying. Each of them received a gift bag with a Valentine bear, a box of chocolates and a gift certificate to the spa. (At Costco you can purchase two $50 gift certificates for $80.)
I hope some of you have given some consideration to showing some love to family caregivers. It is especially appreciated when it is unexpected. As I mentioned before, most family caregivers would love the gift of time – just a few hours of time to themselves.
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Excerpts From The National Family Caregivers Newsletter
If you are a family caregiver you might want to consider joining the National Family Caregivers Association (NFCA). They will keep you informed of upcoming legislation, Medicare/Medicaid changes and other important matters that concern family caregivers. The following excerpts are from the NFCA January e-Newsletter.
Make This the Year You Speak Up!
With the inauguration of a new president who has expressed his commitment to substantive healthcare reform, family caregivers have an opportunity like none before: to make our voice heard as the healthcare reform debate takes shape. The Obama-Biden administration is looking for ideas and feedback as it begins the long process of reshaping America’s healthcare system. Let’s not miss out on this once-in-a-lifetime opportunity. Go to http://change.gov/agenda/health_care_agenda/ to find out how you can be a part of the discussion.
AARP Foundation Helps Families “Prepare to Care”
The AARP Foundation has a publication called “Prepare to Care: A Planning Guide for Families” that provides helpful advice on everything from creating a caregiving plan to finding and obtaining basic resources. Whether you have just begun caregiving or you have been a family caregiver for years, you will find the publication’s many checklists straightforward and useful. To download your copy of “Prepare to Care,” go to www.aarp.org/foundation/preparetocare.
Worldwide Parkinson’s Disease Trial Seeks Participants
Worldwide, a team of researchers is evaluating an investigational medicine for the changes in thought, behavior, and judgment that can occur with Parkinson’s disease. About 280 people will participate in this study at approximately 65 research centers around the world. Participants will be asked to make seven visits to the study center. It is possible that at the end of the initial treatment period, participants may have the opportunity to receive extended treatment with the active investigational drug. The clinical study is now enrolling qualified participants. To learn more, please visit www.ParkinsonsBodyMind.com or call 866/565-0262 today.
Global Multiple Sclerosis Trial: Volunteers Needed
While great progress has been made toward developing treatments for people living with MS, a need still exists for more effective treatments that may slow the progression of the disease. Researchers currently are seeking adults who are living with relapsing-remitting multiple sclerosis (RRMS) to participate in two global clinical research studies: CARE-MSSM I for adults 18-50 who have not yet begun therapy for MS other than corticosteroid treatment, and CARE-MSSM II for adults 18-55 who have experienced relapses (flare-ups) on an approved therapy to treat MS. The CARE-MS studies are designed to determine the safety and effectiveness of alemtuzumab, the investigational drug, as compared to Rebif® (interferon beta-1a), a current FDA-approved treatment. All study-required medications and procedures are provided at no cost. To learn more, call 866/790-MS-CARE (U.S. only) or visit www.CARE-MS.com.
Caregivers Wanted for Online Support Program for Stroke Families
Kent State University is conducting an NIH-funded research program designed to help female caregivers and male stroke survivors who face difficult challenges following a stroke. In this program, family caregivers will get online access to critical support, information, and education that will help to facilitate the stroke survivor’s physical and emotional recovery and reduce the family caregiver’s feelings of strain or burden. The program is especially targeted to caregivers and stroke survivors who feel depressed or anxious. All couples who participate will receive cash incentives up to $140. Couples must have their own computer and Internet service provider if they reside outside of Ohio. For more information, call 866/300-6657.
CCAN Volunteers Initiate Family Caregiver Postage Stamp Campaign
NFCA’s CCAN state volunteers want to see the United States honor our approximately 52 million family caregivers with a U.S. Family Caregiver Postage Stamp. To that end, Virginia CCAN Representative Terry Vasquez, who is spearheading the initiative, and other CCAN volunteers are collecting thousands of signatures to send directly to the Citizen Stamp Advisory Committee of the U.S. Postal Service. And they need your help.
Visit NFCA’s Web site at www.thefamilycaregiver.org and click on the U.S. Postage Stamp button on our home page to submit a letter to the Citizen Stamp Advisory Committee. On behalf of all family caregivers, we thank you in advance for your support of this effort.
Alzheimer’s is a Family Disease, Taking Care of Momma
There are over 5 million people in the United States alone who suffer from Alzheimer’s disease. It is estimated that at least 10 million baby boomers will develop Alzheimer’s in their lifetime. In this guest post, my friend, Myrtis Jones shares her family’s Alzheimer’s experience with their mother.
I am one of eight children, six girls and two boys. Growing up in a rural area in Alabama, we were a very happy family. We did not know that we didn’t have much, because there was so much love in our household. My father died in 1984. He was the joy and laughter of our family. Needless to say my mother was lost without him. We were concerned about her after his death and didn’t know if she would survive without him because my mother is an introvert. My father was an extrovert. Surprisingly, Mom has done very well.
Mother was the backbone of our family. She was the one that always made sure we were taken care of, and that we always looked good. Having six girls you know that was a job. She never grumbled nor did she show us anything but love. We got our share of whippings, but I am so thankful to her for the way we were raised.
Alzheimer’s Diagnosis
My mother is 87 years old and had begun to do weird things. So, one day my sisters took her to the doctor and she was diagnosed her with Alzheimer’s. This was devastating to our family. We had seen other people in our neighborhood caring for their elderly parents, and often admired them, because they demonstrated so much patience.
My mother cannot live alone anymore. She is unable to care for herself. She has to have help taking a bath, putting on and pulling off her clothes, brushing her teeth, etc. Now, she will only let some of us do this for her. Isn’t that something? Someone has to be with her at all times.
Let me tell you a little about my mom so you will understand our challenges.
The doctor recommended that we allow mom to stay in the hospital for fourteen (14) days for a study. They would observe and determine what stage of Alzheimer’s she was in and what type of medication she needed. Now we knew that when we put her in there, and after they observed her, they would have to rewrite the program, because we knew mom would do something that they had never seen before, and we were right. She cleaned the floor of the hospital from top to bottom, she had very little sleep, and she went from room to room nosing around. They had never seen anything like it.
Mom’s Primary Caregivers
My sister, Louise and her husband decided that they would move Mom into their home and care for her. Well now, that was easier said than done. We tried to talk my sister out of it, and that we should hire someone, but she said that is what she felt she was called to do.
My mom’s house is down the road from my sister, it’s in walking distance. Mom’s mind goes and comes so sometimes she thinks that my sister’s house is her house, and then at times she knows that she lives down the road. If you take your eyes off of her she will ease out the door and go home. We are very concerned about her now because the weather is changing and if she walks out without a coat she could freeze to death.
My siblings and I take turns caring for mom – we have a schedule. Her disease is progressing and she does not treat all of us the same. One sister says that it is hard for her to keep mom because mom acts like she does not want her to care for her. This disease seems to make Mom like some of us more than others. Those of us that she likes she behaves when she is with them, but the others, she gives them, you know what.
One Sunday my sisters decided that they would take mom to church, since she seemed to be doing so well. She behaved very well while in church, but lo and behold, after church when they had taken their eyes off of her, she was on the other side of the room, speaking out the pastor’s wife. Needless to say her days at church are few and far between.
The Energizer Bunny
My mom is like the energizer bunny, she never sleeps. I have never seen anyone who can operate off of two hours of sleep a night. My brother said that she had not slept in 48 hours. It was killing him instead of her so we took her to the doctor and they gave her a stronger prescription of sleeping pills.
Louise thought that keeping her busy would help her, so she told Mom that they would clean the garage, which took hours. Well, the only one tired was Louise; the energizer bunny was still going. After that, Louise ended up sick and Mom as well as could be.
My mom is very mobile. She has always been a busy person. She is one that has a hard time sitting and enjoying life. Have you ever seen a person who always has to be moving, that’s my mom. So with that said, on my watch, she wondered off and I did not know where she was. I told her that I was going to go upstairs to take a bath, now when I decided to go and take a bath she was sitting in a chair nodding off to sleep, so I thought. When I finished I called for her and she was not there. I ran out of the house to look for her. I drove down to her house and there she was. My brother said that she had walked down there. We are so blessed because we live in a small town and everyone knows her. The neighbors all know what we are dealing with and when they see her they will bring her home.
Now when you see or talk to my mom you may think she is very much on top of things, because she is very alert. The only time you will know that something is wrong is when she asks you the same thing a hundred times.
A Helpful Resource
The best thing that has happened to us during this time is that someone recommended a book to us, The 36-Hour Day by Nancy Mace and Peter Rabins. This book has helped us tremendously. We now know what to expect and how to deal with mom. We know that we can do things that she enjoys doing and if we just put my dad’s picture there for her to look at she will talk to it and continue to work. This book has helped us to realize that this is a disease and she is not herself. Whatever she says just go along with it. I have found that it really works. If she tells me the sky is purple I just say okay it sure is. It has helped us to realize that this is a disease. If she knew better she would not do these things.
I truly know now why God gives different gifts to families. My hat goes out to two of my siblings, Pat and Louise, who are very gifted in caring for the elderly. My sister, Louise, has that special gift. She knows what to say to her and how to say it. May God forever bless her and her husband. These two siblings live near mom so the burden is on them. We can only get home once or twice per month to give them some relief.
I, on the other hand, know that I have to continue to pray for patience and the ability to care for my mom. I love my mom very much, and I will do anything for her, but I am not as strong in that area as I would like to be.
I pray for all caregivers around the world.
Related Reading
Sending Momma for an Alzheimer’s Assessment
