I Feel Like I’m Going Crazy! Mom/Dad Acted Fine at the Doctor’s Office
September 17, 2008 by carolodell
Filed under Alzheimers, Caregiver Stress, Carol O'Dell, Contributing Authors, Featured Articles, Grief and Loss, Uncategorized
How can a person who doesn’t remember their own son or daughter, keeps their purse in the freezer and thinks that trees are talking to them act completely normal in front of a stranger?
It’s called social convention abilities, or social response abilities, which means your loved one who you know has dementia/Alzheimer’s, can get their act ”together” in front of the doctor or some other person and talk or act fine.
It can seem as if you’ve been tricked.
Social convention means that all those years we’ve walked past someone and said, “Hello, how are you? I’m fine” are now hard-wired in our brains.
We answer without thinking.
We sit up straighter when someone we don’t know enters the room, we act polite when we’re talking to a stranger, or wave when waved to, smile, even laugh at the appropriate pause in the story.
Professional care providers and those who work in the mental health field know about this, but I haven’t heard it discussed among caregivers–and this is important to know.
A person can access this ability when they’re in a new setting or with new people (stimulation) and they can act perfectly fine when just a few minutes ago they were having a conversation with a Dwight D. Eisenhower!
This can be so frustrating.
You were worried, got them dressed, killed yourself to get to the appointment on time–and now they’re chatting it up with the nurse.
The behavior you’ve observed at home is the “real deal.”
This doesn’t mean your loved one doesn’t have dementia/Alzheimer’s.It doesn’t mean they don’t need meds or assistance.
You’re not crazy, but it can feel like you are.
I hated when my mom did this–I felt like such an idiot for traipsing to the doctor yet again for my mother to say no, her knee didn’t hurt, no, she wasn’t having headaches. Then, they’d all look at me as if I were making the whole thing up!
Memory and recognition will vacillate.
Your loved one will remember who you are, and then forget. They will remember their spouse has passed, and then insist you take them to see them.
Caregivers are the bridge between their loved one and the medical world. Sometimes they’re ignored. Other times, they take over too much. It seems like you can’t get it right. No matter what you do, it’s too much or not enough.
Some physicians know about social convention abilities and understand it’s a normal human response to stimulus. But many doctors don’t know about this. Don’t think your doctor is well-informed about the nuances of Alzheimer’s. Unless they’re a specialist in this field, they probably don’t.
People can cover up how bad a situation is—and we’re all too willing to believe it because we need things to stay the same. We need our loved ones to be okay—but sometimes, they’re not.
“I Don’t Want to Live With my Adult Children!” Our Parent’s Perspective
September 8, 2008 by carolodell
Filed under Alzheimers, Caregiver Stress, Carol O'Dell, Contributing Authors, Featured Articles, Grief and Loss, Uncategorized
If you’re a caregiver/son, daughter, please read this post.
You need to put yourself in their shoes.
But I don’t want to live with my adult children!
Me neither.
(And I wrote the book, Mothering Mother–and my mom lived with me the last (almost) three years of her life!) That’s my point–my mother lived on her own–with Parkinson’s and early dementia until she was 89 years old!
We’ll all be in this predicament one day–if we live that long–so we need to be empathetic.
My kids are grown, responsible, and we all love each other–and I still don’t relish the thought of permanently living with them! I am a big proponent of family caregiving–but do it when the time is right.
No one wants to give up their independence.
We like things our way, our household “rules,” TV shows, and favorite laundry detergent. Seemingly insignificant choices give us a sense of autonomy and joy to every day life.
We also don’t want to be a burden. I hear this a lot. I feel it on a personal level, but know that when it’s necessary–cancer, end of life, when it’s really needed, then it’s not a burden. It’s a priveledge–
Ad you still have much to give.
Encouragement, humor, appreciation, family togetherness is a rare and precious gift and should not be under-ppreciated.
I feel priveledged to have children. And I know if/when I have to, we would all do our best to make it work. I’m grateful I have the option if I needed it.
There are many people who do not have children. Or their children are not able or willing to help.
No time for a pity party. Get busy! Use this as a catalyst to get busy doing just that–planning your life–for quality and purpose.
If you don’t want to live in a care facility (prematurely, and hopefully never) or with someone else–family member or not, then I (and you) better have a plan.
Note: Decide today to be okay how your life turns out–either way. Who knows what will happen?
Have you heard of the aging in place movement?
This July AARP released a new report citing that 87% of people with disabilities age 50 and older want to receive long-term care (LTC) services in their own homes.
The National Aging in Place Organization is about collaboration and education to live at home as long as possible.
Aging in Place includes building/altering your home so that you can stay there safely as long as possible.
It might also include a ramp, ample doorways and bathrooms for wheelchair accommodation, safe flooring, and even a space for live-in care. It’s up to each individual to make these arrangements to suit (by anticipating) their needs. This term is also loosely used to help individuals begin to plan for their future in terms of how and where they want to live as life progresses.
Aging in place might even include moving so that you are living in an area where retirement and aging is not only enjoyable, but that you also have ample resources within your community for the care you might need.
Or…it might include living close enough to your adult children so that they can easily check on you and manage your care without having to live with you. ( I know of three families in our neighborhood whose mothers/parents also live in another house in the neighborhood).
Recently, after Tropical Storm Faye, I saw one of the son-in-laws picking up debris out of his mother-in-law’s yard. At least he didn’t have to drive an hour or two to do this little chore–or worry about someone charging her an exorbitant price for a job that took less than an hour.
How to Arrange Your Life So That You Can Live at Home Longer:
(consider one or more of the following suggestions)
- Move your bedroom on the first/main floor
- Do a computer search or call your council on aging and get a list of all your community’s resources now. Don’t wait until you need help to start this process.
- Consider redoing your main bath to accommodate a wheelchair/walker–and make your shower easy to get in and out of
- If your spouse has passed away, consider a roommate. Finish a garage or basement if you’d like it to be more private and separate. This $10-20,000 investment (if it’s done well) could give you added years at home–you could even trade rent for care.
- Be sure that if you choose to do this that you both sign a contract for renting, you get driver’s license info, run a background check and never ever give them access or personal/financial information.
- Even though there are risks involved, having someone live with you or on your property can provide a certain sense of security, companionship, and allow you to stay home much longer than living alone.
- Consider an alarm system if you feel you live in an area where you’re vulnerable to break-ins. Check with your local police to see if this is a common occurance. Elders can be targets for easy crimes.
- Don’t blab to every cable and lawn guy that you live alone. Always act like your son/nephew is in the house, coming home, on the phone. Even if you don’t have one–never let others think you’re always alone. Don’t be an easy target!
- Consider “the button,” a moniteringdeviceyou wear in case you fall. There are systems that will call and check on you morning and night (of course, you pay extra for this), but it might give you and those who love you a peace of mind to know that you can call for help at any time.
- Wear the thing! My mom was terrible about leaving it on a piece of clothing she wasn’t wearing, forgetting where it was–and caregivers, family members–if your loved one has memory loss, this may not help them. They won’t necessarily remember they have “the button” on, or even what it’s for!
- Get rid of clutter now! Clutter can cause you to fall and gets to be a real hassle for those caring for you. Don’t leave this to your family to do later–give those sentimental items to your family members now so that you can see the joy on their face when they use their grandmother’s dishes or wear a family heirloom piece of jewelry
- Gather all your important documents–insurance info, cards, prescriptions, life insurance, house insurance and living will. Place these items in a portable box and let your loved ones know where it is–for easy access.
- Do that living will now–don’t make your loved ones have to guess or fight over whether you’d want to be put on a ventilator or not. Be clear. Make several copies and give them to all the important peopel–one for you, your main doctor, the hospital you’re likely to go to, and one or two loved ones/guardians who would get to you quickly in times of emergency.
- Get a recliner chair that can lift you out easily (consider this your next purchase when the current chair needs to be replaced)
- Eventually consider a bed that is motorized–this added expense really helps if you have back problems and can sometimes be covered on insurance
- Place tread on any slick floors inside or outside your house to avoid slipping
- Remove any throw rugs that might trip you–(you may need to do this later or if you tend to shuffle)
- Begin to think about your options if/when you can no longer drive–is there a senior van in your area? Friends/neighbors who you can ride with or will pick up a few items for you? Even consider a taxi–most areas have taxis (even if you’ve never used one in your area before, they’re probably there). Don’t sit at home and waste away–even if your eyes or your coordination begin to wane, you can still get out and enjoy life.
- Continue to be a part of your local church/temple. Make friends–you need them, and they need you! Churches and community organizations are there to help. Let them. Helping others make us feel good–don’t be so stubborn and independent that you don’t allow someone else to give and feel good. If someone is willing to pick you up to take you to Sunday School or choir practice–let them~ You still get to go to an activity (which is good for you), and they feel like they’ve helped someone. Win-win.
- Get to know your neighbors. You can all keep an eye on each other. Be nice to the kids in your neighborhood–they can rake your leaves or bring you the mail. Most children and even teens long for a grandparent and don’t get to see theirs enough. Wave! Smile, get to know their moms and dads so they trust you. Bake a cake and take it to them. Cultivate relationships. Old-fashioned neighborliness and friendship never grows old and is never out of style.
- Choose where you want to pass away. Hospice offers you the choice to spend your last few months/weeks/days at home and can offer palliative care (pain management). Most people choose to be in their own home and to surrounded by those they love.
- Hospice means that you have a life-limiting condition with a diagnosis or a year or less to live. Don’t wait until the last minute–ask for hospice. Anyone can refer you to hospice (including yourself or your physician). Also know that many cities have more than one hospice with varying levels of care and options. Check them out to see what’s available to you.
Bottom line:
Plan now. If you’re over 50, then you better start planning. Having a 401K isn’t enough. It doesn’t take care of the details and quality of life–and money won’t fix everything.
Adapt your house to suit your aging needs.
If it’s not too late, and you need to, move closer to family so that it’s not hard for them to drop by and check on you.
And…or…live in a community that is “elder friendly,” with lots of resources.
Stay involved with people. Accept their help. Give back any way you can. A smile, a hug, homemade cookies will get you lots of friends. Neighbors are important. Do more than wave. You might need them one day.
Stay/get involved in church and other community activities. The more plugged in you are, the more people you have in your life, the more your mind/body stays active. Staying active will keep you at home.
No longer driving is not the end of the world. Figure out how to make it work–taxi, community van, church members/neighbors.
Consider a roommate or a family member living arrangement. Just be safe, sign a contract, and do a background check. ( I know of several nieces/nephews who are young and starting out in life by sharing a house with an aunt or grandmother).
Get help when you need it–hiring day-time care is cheaper than a care facility. There are many great companies such as Comfort Keepers who are licensed, bonded, flexible and reasonable–usually less than $20.00 an hour.
Keep a positive outlook on life!
Smile, see the good, and find ways to give and receive love.
Carol D. O’Dell, and I’m a family advisor on Caring.com.
Check out my book, Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir, available on Amazon, other online stores and in bookstores. Kunati Publishing
My syndicated blog appears on www.opentohope/caregivers.com
Alzheimer’s Disease - Caring For the Caregiver
August 12, 2008 by Caregiver Support
Filed under Alzheimers, Featured Articles
By Wendy Gorman
Caregivers need just a much care as the Alzheimer’s patient. Many times people who take care of parents or other family members who are affected by Alzheimer’s Disease are overlooked in the care process. This can result in burnout especially if the caregiver is still looking after their own family at the same time. There are some specific issues that need to be focused on so that caregivers of Alzheimer’s patients avoid this burnout.
Many caregivers start to feel lonely and isolated after a period of time. This is particularly true if they are providing care around the clock. Friends and family should make a point to call or visit the caregiver so that they have some connection to the outside world.
Caregivers can become very frustrated so it’s important to take the time to listen to what they have to say. Sometimes it can help just to talk about the stress and anxiety that they are feeling since they won’t be able to share this with their patient.
Caregivers need to have a break now and then, even if it’s only for a few hours a week. Family members and friends should lend a helping hand so that the primary caregiver can get out of the house at least once a week.
Help with everyday chores will also be needed since there is no way that the caregiver can do everything. Some of the help that family members and friends can provide include (1) bringing over a cooked meal, (2) doing a load of laundry, (3) buying groceries, or (4) housekeeping. If no one is available to lend a hand you might want to consider hiring an agency to come in and help with some of these domestic chores.
With so much information about Alzheimer’s Disease available it’s important that caregivers stay up to date with current news. This includes all aspects of giving care, new medications, and specific information about the disease. As many people as possible should be involved in the care of an Alzheimer’s patient as possible.
Around the clock care is crucial for patients who have reached the later stages of the disease. Although one primary caregiver should be appointed to a patient it doesn’t mean that all issues of care should come to depend on this one person. Giving care to an Alzheimer’s patient means a lot of hard work, frustration, fear, and tears. Sharing the load among as many people as possible only eases the burden for all and can improve the quality of care that is provided for the patient.
Wendy Gorman is an accomplished author and niche website developer. She is committed to explaining why [http://www.allaboutalzheimers.org/]Alzheimers Disease is best diagnosed early and also what to look for in recognising [http://www.allaboutalzheimers.org/]the onset of Alzheimers Disease. Visit her sites now to better understand the effects of the disease on family and loved ones.
Article Source: http://EzineArticles.com/?expert=Wendy_Gorman http://EzineArticles.com/?Alzheimers-Disease—Caring-For-the-Caregiver&id=1390698
Caregiver Burnout
August 12, 2008 by Caregiver Support
Filed under Caregiver Stress, Featured Articles
Caregiver Burnout
By Jeanne Slayton
Do you have “caregiver burnout”?
Some signs, causes, and solutions for caregiver burnout in the Triad of North Carolina
Are you:
- Withdrawing from friends, family, and other loved ones?
- Feeling blue?
- Experiencing changes in sleeping patterns?
- Feeling like you want to hurt yourself or the person you’re caring for?
- Irritable?
- Losing interest in activities you used to enjoy?
- Seeing changes in your appetite, weight or both?
- Getting sick more often?
- Emotionally or physically exhausted?
Caregiver burnout is a state of physical, emotional, and mental exhaustion. Burnout can occur when caregivers don’t get the help they need or if they try to do more than they are able to do.
Causes of Caregiver Burnout
Caregivers are often so busy caring for others that they tend to neglect their own emotional, physical and spiritual health. The demands on a caregiver’s body, mind, and emotions can easily seem overwhelming, leading to fatigue and hopelessness - and ultimately, burnout. Other factors that can lead to caregiver burnout include:
Role confusion - It can be difficult for a person to separate his or her role as a caregiver from their role as a spouse, lover, child, friend, etc.
Lack of control - many caregivers become frustrated by a lack of resources and skills to effectively plan, manage, and organize their loved one’s care.
Unreasonable demands - some caregivers place unreasonable burdens upon themselves because they often think that providing care is their exclusive responsibility when it shouldn’t be.
Preventing Caregiver Burn-out
Find someone you trust, such as a friend, co-worker or neighbor, to talk about your feelings and frustrations. Use community resources to your advantage. Get in touch with your church, the local senior center, or such organizations as the Alzheimer’s Association.
Be willing to accept that you may need help with caregiving, or routine tasks and turn to others for help with some tasks. When family and friends ask what they can do to help, give them a task, even if it is doing the dishes while you sit down for a moment.
Don’t forget about yourself! Set aside time for yourself, even if it’s just an hour or two. Remember, taking care of yourself is NOT a luxury - it is an absolute necessity!
Take advantage of outside help. Find a company that provides good in-home care and use them, even if only for a couple of hours once a week. Use that time to go to the grocery store, or go to the park, knowing that your loved one is well taken care of.
Jeanne Slayton is the Case Manager/Community Relations Coordinator for Senior Helpers of the Triad. She is dedicated to helping provide the best care and resources for the seniors in her area. For more information please contact her at [mailto:jslayton@seniorhelpers.com]jslayton@seniorhelpers.com or visit Senior Helpers on the web at http://www.seniorhelpers.com
Article Source: http://EzineArticles.com/?expert=Jeanne_Slayton http://EzineArticles.com/?Caregiver-Burnout&id=1261442



