Rest and Renewal Tips for Caregivers

I saw this posted on a website and thought I would just add a few thoughts of my own!

* Hire a sitter or an aide for occasional events or on a regular basis. Once a day would be optimal, but not always practical. Try for once a week. If this isn't available to you, for whatever reason...try and take moments in the day just for yourself!

* Arrange for other family members or friends to provide care. Make a list of phone numbers and keep it by the phone. Write yourself a note at the bottom of the list. (for my sanity!) Let yourself use your list of resources.

* Use a nursing home or assisted living facility for planned vacations of a week or more. If you can't afford to do this, I would check with the department of social services to see if you qualify for relief care. Instead of sending your loved one to a facility consider this...you may be the one that needs to go to a friends house!


* Use a day hospital or adult day care.

* Get a family member or friend to take on some responsibility regularly, such as paying bills, taking your loved one for a daily walk, giving a bath and shampoo. If you are having a hard time finding help, there are many avenues in which to look. I would start with local churches! Ask nurses in your area if they know of someone who could help!

* Change your expectations for yourself: let the housework go more than you like, for example. Letting some of the housework go is ok, but not all of the time. I'd try hiring a housekeeper, having someone take your loved one for a walk so you can focus on cleaning. Or have your loved on stay with you in the room you are cleaning. If you are like most women, letting the house go will make you fell worse!

* Meditate or pray. Stick to prayer!

* Recognize that for some people, nursing homes or assisted living facilities are the best option. If you choose this option-don't beat yourself up!


Helpful website where I found this article

Dear Neurologist...An Open Letter

The following letter is from author Deborah Uetz. Once again I find her writing very insightful concerning the lives of those whos loved ones are diagnosed with and are suffering from Alzheimer's Disease. If you wish to read more from Deborah Uetz you can check out her section called, Into the Mist on My Care Link's Alzheimer's Support Forum. ~ Dutchy

You will meet me several times every day as I step into your examining room holding the hand of someone I love. You probably don’t notice that I am holding my breath as you look at the test results and speak the words I expected and never dreamed I would hear…“Alzheimer’s disease.” At that instant you may think I can take it all in and understand the gravity of the words you have spoken. I cannot. It is only with the passing of each hour that I can truly grasp what the disease is capable of and how totally vulnerable I will feel as I watch in utter despair.

I walk back out into the lobby of your office a changed person, living in a separate world. Nothing is as it was. “We” will become “I”. My partner, my parent, my friend will fade away from their own life. Do you see me standing there, wondering what I am supposed to do next? No follow up appointment? I don’t understand. There was always a follow up appointment…what now?

As I walk out into the “real world” I pass someone else who is clasping the hand of a loved one and as they wait for those words that they know are coming but they never dreamed they would hear.

In the hours, days, weeks and months since we left your office our lives have become a tangle of crisis strung together into a 24 hour day. My loved one wants to go home and cries and pleads that I take him home. He stands in his own living room crying to go home. The night time is filled with episodes of anger and incontinence and nightmares. His sleep is fitful at best, barely sleeping. I lie awake in fear. What if he goes outside and I don’t hear him. What if he thinks I’m someone he is afraid of? I can’t close my eyes but tomorrow will start whether I have closed my eyes or not.

He asks “Where is my wife?” as I hold his hand. He asks “Who are you?” as I twist my wedding band and my heart is breaking. He was my soldier and I was his bride. He fought a war but this war he will not win. He was the father, the man who knew everything and taught his children to be gentle and kind. Now he is raging and hitting and we are afraid. There is no follow up appointment. The words have been spoken. There is no road map.

When tomorrow comes and I walk into your office, a different face, a different name, please remember that I am the wife who will answer the question “Where is my wife” a thousand times a day. I am the daughter whose father will look through her as if I am transparent. I am the son who will have to take my father’s keys and checkbook to protect him from himself. I am the one who lives in a world where up is down and down is up and there is no follow up appointment. Please help me understand.

Please give me more than a medical diagnosis. Give me your compassion and see me. See ME, not just the patient’s wife, daughter or son. See that I am shattered and afraid. Please SEE ME.

Deborah Uetz
Author of Into the Mist, When Someone You Love Has Alzheimer's Disease
www.intothemist.us
Such a good message here, that I thought I would repost it. Originally posted in 12/05

Alzheimer's and Companionship

This was an interesting article that I found on Alzheimer's and companionship in the nursing homes. I don't know how I would feel in this situation. I find it hard thinking about my husband re-marrying even if I were deceased. (please see the link at the bottom of the page for the source of this article)

By E.J. Mundell
HealthDay Reporter

MONDAY, Dec. 10 (HealthDay News) -- Even when Alzheimer's disease robs them of the life they once knew, some people can still find love among the ruins.
Latest Alzheimers News


And in most cases -- as highlighted by recent news on retired Supreme Court Judge Sandra Day O'Connor -- the spouse or child of the Alzheimer's patient grows to understand and accept the new relationship, experts say.

O'Connor's Alzheimer's-stricken husband John, 77, has found companionship with a woman in the nursing home where he now resides, according to recent news reports. The two spend time together, holding hands, even when Justice O'Connor is nearby, the reports said.

This type of relationship was also the focus of the recent film Away From Her, starring Julie Christie as a woman with Alzheimer's who gradually forgets her husband and forms a new bond with a fellow nursing home resident. Her husband gradually comes to accept the relationship, understanding that it gives his wife comfort and stability amid the confusion that Alzheimer's can bring.

Such an emotional journey is common for caregivers confronted with such a situation, said Donna Schempp, program director of the national advocacy group Family Caregiver Alliance, based in San Francisco.

Most spouses or children of people with Alzheimer's "have responded very positively" to these newfound relationships, which are not uncommon, she said. "Because if the person does not know who you are anymore, it's not a rejection," Schempp explained.

"And in the end, we want the person that we care about to be happy," she said. "Just behaviorally, and in other ways, they are going to be better if they are feeling cared about and nurtured, loved and appreciated."

Experts in Alzheimer's disease say many people are surprised to learn that patients continue to have rich emotional lives.

"People still have their personhood at the core of who they are," said Dr. Peter Reed, senior director of programs at the Alzheimer's Association. "So the effects [of the disease] do not diminish the individual's need for social interaction, it doesn't diminish their need for dignity and meaning in their life."

Alzheimer's typically causes an individual to forget all but those they see near them regularly, he added. "So, people learn familiarity with the people around them," Reed said, and with that, "they become more comfortable."

The persistence of emotional needs after declines in memory makes some sense on a neurological level, another expert said.

"The Alzheimer's pathology starts in the memory and learning areas of the brain and then spreads," said Dr. Gary Kennedy, director of geriatric psychiatry at the Montefiore Medical Center in New York City. "The direction and extent of the spread varies tremendously from one person to the next. For some, their thinking and memory are largely gone, but their emotional expressiveness may be relatively intact."

Emotions may often be less guarded as Alzheimer's advances, with people showing less reticence to express affection, he added. "In some instances, emotional expressiveness may be augmented by the illness -- in other words, inhibitions may be taken away," Kennedy said.

Sexuality can enter the mix as well, and that's where relationships between Alzheimer's-affected patients get more complicated, Schempp said.

Depending on a person' level of cognition, "there's a kind of moral-ethical issue as to when someone can be consensually involved," she noted. "Some nursing homes just categorically say no, other nursing homes work on it on a case-by-case basis. Some nursing homes say no because the families object, and some nursing homes say yes because the families are OK with it."

Schempp said that, in her experience, the adult children of Alzheimer's patients typically have a tougher time accepting this new love than spouses do.

"It's harder for the children -- it's an abandonment, and they feel committed to both parents. How could my mother or father do this?" she said.

That's where educating yourself about the progression of the disease really becomes valuable, she said.

"In our experience, so many people know so little about dementia and yet they are caring for someone with dementia," Schempp said. "It just goes back to the incredible need that we have for people to get informed. It takes a lot of information to really be able to navigate how you care for someone with dementia."

In the end, allowing a loved one to find his or her own peace amid the ravages of Alzheimer's may be the best course to take, Kennedy said.

"As Sandra Day O'Connor and others say, they are just thankful that there is a moment of happiness that comes into their loved one's life," he said.

SOURCES: Donna Schempp, LCSW, program director, Family Caregiver Alliance, San Francisco; Peter Reed, M.D., senior director, programs, national office, Alzheimer's Association, Chicago; Gary Kennedy, M.D., director, geriatric psychiatry, Montefiore Medical Center, New York City

Copyright © 2007 ScoutNews, LLC. All rights reserved.

Favorite Forum Post

This post has been saved in an edit mode for a very long time. Partially because it is so raw and real. They are words that seem to intimate to share. These words of encouragement from a person who is walking down the road of Alzheimer's to another who is walking that road, could never have been said better. I hope that these courages words will inspire, uplift, encourage, and challenge you...to remain steady in the fight!


One time when my wife was more lucid during one of her hospital
stays, she also spoke to me like your husband spoke to you.

First, she apologized for all the trouble she had caused me. :cry:
Imagine that?

The next thing she said "floored" me.
She said, "Richy, get on with your life. Do what you got to do."

YEAH RIGHT!! :roll:

I told her there was NO WAY I was leaving her.

A few weeks ago, in the last sentence she has uttered, she said,
"I can't take this no more."

I got a bit mad and told her, "Don't you quit on me! I'm not quitting on you!"

Bunny, I guess what I'm trying to say is, those feeling of despair are real...but they are temporary.
I try to foil the emotions of despair and depression and grief with ANGER! :twisted:
ANGER at this dreaded disease. :twisted:
You can function when you're mad...quite well!

You mentioned that you don't know how long you can "Live this nightmare".
You already know the answer to that one.
You don't want to live it; you don't have to live it; but you will live it because of one thing.
You love your husband now; you loved your husband then; and you will always love him.

None of this is easy. Not for ANY of us.

The worst part of reality is praying for a miracle and knowing that no miracle is coming.
(Can you use the words reality, pray and miracle in the same sentence? :-k )

Sounds like you need some rest. :wink:

Alzheimer's talk

Alzheimer's Disease- a progressive brain disorder that destroys a persons ability to remember present and past events. Alzheimer's slowly affects a persons ability to walk, talk, dress or feed themselves. It is the number one cause of Dementia.

Dementia- Dementia itself is not a disease, it describes the group of symptoms that are associated with other diseases. Symptoms include, memory loss, disorientation to time and place, the inability to carry out familiar tasks, changes in mood and neglecting personal hygiene.


Early Onset Alzheimer's- Alzheimer's affecting a person before the age of 65

Familial Alzheimer's- A rare form of genetically inherited Alzheimer's disease, accounting for a very low percentage of those who suffer from Alzheimer's. It usually begins before the age of 65.

Neurological Disorder- A condition that relates to the brain or nervous system

Sundowning- Increased agitation, wandering, confusion in a person who has Alzheimer's, this occurs late in the afternoon or evening.

Catastrophic reactions- Extreme outbursts of emotions

Hallucinations- Hearing or seeing things that aren't really there

Delusions- Believing that someone is following you, out to get you or poison you

Just a few vocabulary words, that might help you out ~ Dutchy

Alzheimer's Gardens Pt ll

The Alzheimer's Garden Plan

Having access to a nice garden can meet so many needs for people with dementia and their caregivers. Good garden design can be part of a treatment plan for people with Alzheimer's who are very restless or agitated and who like or need to walk a lot.

Aims of Garden Design for Alzheimer's


Provides exercise, opportunities to relieve tension, frustration and aggression.

Provides personal space for reflection and privacy.

Provides a different social environment.

Provides stimulation with color, smells and sounds of wildlife.
Good Design for Alzheimer's Garden
First you need to think about the garden's design. One of the best is a figure-of-eight looped path, or similar, simple returning-path system. You can plan a garden that allows access outside but always leads the wandering person back to their house or building.

Think about visibility and observation so caregivers can relax if they use the time for separate pursuits. Good dementia garden design should cater for the able bodied as well as those who have problems with mobility.

In your garden design you will need to include places to sit and shelter from the sun and the wind. Bushes and trees provide structure and direct movement. Maximize perennial plantings, annuals do take up more time. Fill the garden with bright flowers. Place herbs, lavender and other plants so that when brushed they will release their fragrance.

Providing a Safe Garden for Alzheimer's
Safety issues are central to good garden design for people with Alzheimer's or dementia. The design should include;


Pathways that are smooth, and low in glare.

Steep gradients are not a good idea, neither are steps or low planters.

Appropriate proportion and path width is very important if you are catering for wheel chair users. As people with Alzheimer's and dementia do tend to lose physical skills and ability over time it may be a good idea to cater for mobility aids at the outset.

Use upward bevel edges on concrete walkways. This can keep wheelchairs from rolling into lawns or landscape beds.

Handrails can be used along the pathways to help those who have difficulty in walking.

In gardens you need protection from the sun and the wind throughout the four seasons of the year. Protection from the sun is very important as certain medications, such as largactil, (thorazine) or mellaril (thioridazine), can make the skin more prone to sunburn.

Use of nonpoisonous and nontoxic plants. Plants can harm people if they eat parts of the plant. Others can cause skin rashes and irritation.
Avoid dark, shadowy areas. People with Alzheimer’s or other types of dementia can mistake it for negative events.

Too much light reflection or dark areas are not helpful to older people who can have problems with their sight. A number of degenerative eye conditions are common in old age.

People with Alzheimer's Love Gardening Too!
Include people with dementia in planning and designing the garden. Many people with dementia will have built up a lot of knowledge and experience about gardening. They can contribute in varying ways, from active involvement to picking their favorite flowers.

Found at About.com

More Incentive to Get or Stay Healthy

New Research Suggests Ways to Slow—or Prevent—Alzheimer's
By Nancy Shute
Posted 6/12/07

Treating the common risk factors of heart disease—high blood pressure, high cholesterol, and diabetes—can slow the progression of Alzheimer's disease, according to a new study released June 10 at the Alzheimer's Association Prevention Conference in Washington, D.C.

Worldwide, 26 million people have this dreaded affliction, which kills memory and destroys independence. Some 5 million Americans are among them. The number of victims is expected to rise by 450,000 new cases a year, as baby boomers age and become more susceptible; all told, the number of cases worldwide is expected to quadruple to 106 million by 2050, according to a new study in Alzheimer's & Dementia. There's no good way yet to predict who will get it, and treatments have been limited to drugs that reduce symptoms but don't halt the disease's destructive path through the brain.


That grim situation is brightening, thanks to 15 years of concerted effort by scientists. Better diagnostic tools and treatments that may slow Alzheimer's progression are in the works. And doctors are now talking about preventing Alzheimer's, an idea thought impossible just a few years ago.

In the new prevention study, researchers at the Memory Center in Lille, France, tracked 891 dementia patients for four years. The ones who were treated for diabetes, high blood pressure, and high cholesterol did better on thinking and memory tests than people who didn't. A second study in the journal Neuron, suggests that avoiding brain injury may have a protective benefit. Researchers found that the death of brain cells caused by stroke or head trauma triggers the production of amyloid-beta protein, which forms the brain-tangling plaques of Alzheimer's. The risk of stroke can be reduced by treating high blood pressure. Wearing helmets when bicycling, skiing, or doing other high-speed sports substantially reduces the risk of head injury.

The Centers for Disease Control and Prevention on Sunday unveiled its Healthy Brain Initiative, calling for better efforts to help people understand the risk factors associated with Alzheimer's and other dementias. Nine out of 10 people say they think it's impossible to improve mental fitness, but many studies have shown that's not so.

The first step to a brain-healthy lifestyle: "Move more," says William Thies, vice president of medical and scientific affairs for the Alzheimer's Association. "It is really simple." Multiple studies show that people who are more physically active, even if that activity is just walking, are less apt to show the cognitive decline of Alzheimer's and other dementias. The second key piece of advice from Alzheimer's experts echoes the findings of the new French study: Get treated early on for high blood pressure, high cholesterol, and diabetes, and keep on the treatment plan.

How is Alzheimer's Diagnosed?

It used to be said that the only true way to diagnose a person with Alzheimer's was post-mortum, or after death. While this remains true through a process of elimination and diagnostic tests doctors can diagnose a person with Alzheimer's with a degree of certainty.

Evaluations commonly performed during a diagnosis include:

- A medical history, which provides information about current mental or physical conditions, prescription drug intake, and family health history.
- A mental status evaluation that assesses your sense of time and place and your ability to remember, understand, communicate, and do simple calculations. In early-stage Alzheimer's, screening of mental status may not detect symptoms.
- A physical examination, which includes the evaluation of your nutritional status, blood pressure, and pulse.
- A neurological examination that tests the nervous system (brain and spinal cord) for evidence of other neurological disorders. A magnetic resonance imaging (MRI) study of the brain is used to search for other possible causes of dementia (e.g., stroke). In early stages of Alzheimer's the results are often "normal" or "unremarkable."
- Laboratory tests, such as blood and urine tests, to provide additional information about problems other than Alzheimer's that may be causing dementia.
- Neuropsychological evaluations, which test memory, reasoning, vision-motor coordination, and language function and may provide the only evidence of dementia, especially in the early stages.
- Psychiatric evaluation, which provides an assessment of mood and other emotional factors that could mimic dementia or may accompany Alzheimer's disease.

http://www.alzgreatplains.org/alzheimers/diagnosis.html#listitem257-1042

Garden Planning For Alzheimer's

Well outside it's still looking a lot like Christmas. We are getting dumped on with snow. But I thought I would put this article out there for thought today. It might be just what your spirit or mind needs today...thinking about what you are going to be doing in the spring. Now is a great time to plan.

Get out a piece of paper and brainstorm about how you might do a garden for yourself or your loved one this spring. What might you put in it? Begin looking for articles and cutting them out of your last years magazines. Dream.

An activity like this will also help you keep your mind active. Happy Planning

The Benefits of Gardening for Alzheimer’s Patients and Caregivers


Gardening is a healthy hobby for both mind and body. Did you know that gardening can lower blood pressure, prevent osteoporosis, increase muscle mass and keep blood sugar levels more stable? Avid gym members cannot compete with gardeners who lose track of time in this beloved pastime. Gardening is filled with fun opportunities for exercising the mind and body which keeps motivation high. That’s why it is a really great idea to garden with an Alzheimer’s patient. Consider the following benefits of gardening for the two of you:
Exercise to keep fit and healthy
Relaxation Response cultivated in a serene environment
Beauty and fragrance that is mood elevating
Feeling a part of nature instead of alienated by illness
Creative stimulation instead of feeling destroyed
Spirituality and purpose

And if you don’t have a garden? There are botanical gardens and neighborhood patches of land where you get a plot to beautify and grow vegetables. You maintain it, harvest what you planted and ultimately you have beautified the neighborhood.

Another option is that you can garden indoors ranging from ornamentals to herbs. You can start your own garden club and create with friends sharing gardening tips and knowledge. Present your ideas and show off what you accomplished to the group!

Article Found

The Face Of Alzheimer's

Yesterday I went on a picnic. It seems that I have a new shadow. Her name is Connie. Her husband has recently been diagnosed with Alzheimer's. I know why she sits by me and talks and asks questions. She knows that I have seen the effects of Alzheimer's from the begining of the disease to the final stages. She can ask any question and I will answer.

A year before her husband was diagnosed I could tell that he had the disease. It was written all over his face. I could tell by his facial affect. He had very little expression, sometimes he would just seem to stare.

Sometimes called facial emotion, a person with a cognitive impairment will lose their ability to show emotions on their faces. You may not realize how much we use our facial expressions to show how we feel, until you notice it slowly disappearing from the face and eyes of the one you love and care for.

First Steps To Take

You, your spouse, your mother, father or a friend has just been diagnosed with Alzheimer's, a devastating disease with a 10- to 15-year sentence. You may feel like all the pieces of the puzzle you've been working on have been thrown across the room. But you are not a quitter and you have to pick up the pieces and put them together again.

The best advice you can be given is by those who have walked this walk. In the last few years I have asked those who have gone down this path with their loved ones, "What do you want others to know?" Their answers are very similar.

* Read! Find out as much as you can about the disease, the doctors, medications, treatments, signs symptoms, health care benefits and support available to you. There are many resources available: the public library, websites and numerous books that have been written. Arming yourself with knowledge can prepare you for the stages that are ahead.

* Don't wait! Get your affairs in order. Get a power of attorney and advanced directives signed right away. Make decisions now instead of later. Look at all of your care options. Discuss legal and financial matters with an elder law attorney.

* Take a proactive approach to setting up a support system. Find people who are willing to help out in a pinch. Your friends and family may not always be there for you. You may have to hire someone. Don't be stubborn and think you can do it all on your own. Be willing to delegate tasks if people are asking what they can do to help. Join a local support group or an online support group so you can support others or learn from others who are going through the same thing you are.

Take these steps early in your journey. It is harder to take them later when your burden becomes heavier.