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The Ribbon - Care for Caregivers
Volume 8, Issue 9
June 5, 2004
www.TheRibbon.com

1325 Venus Drive
Nashville, TN 37217-1918

Would someone please tell me where the first half of this year has gone to? It just seems like I went to bed and when I woke up it's June!

It's making me feel a tad overwhelmed as I feel that I haven't done all I wanted to do in early spring. (smiling) I've learned to let it go...it's one of those little things that I'm no longer sweating. It's been somewhat of a struggle for me knowing that I'm "not here" for my family when I'm at work. I don't seem to talk to everyone as much because I'm too tired to call or they don't remember which days I'm working.

I'm having a hard time kicking a sinus problem the last couple of weeks. I went to my PCP and was told to take Claritin-D and Meclazine. I've been taking them but it hasn't improved. I'm still stuffed on the left side, having major headaches, getting dizzy, and having some memory problems. I can't go back to the doctor just yet as Nashville Rehab just changed insurance coverage. It took effect June 1 but I don't have my card yet. I'm debating as to whether to call out for tomorrow since I feel so bad but then when I'm working it keeps my mind off of me. I'll make a decision by the time I go to bed tonight.

I got a notice in my email today that Memory Walk 2004 is coming up!!!! Have you made your plans yet? I've informed everyone at Bridges that I will work with their team only every other year as we always have a team for GOF. I will include the link for the Bridges team as soon as we get it set up in case anyone would like to support me in my walk.

The Memory Walks are the biggest fund raisers the Alzheimer's Association has each year and it's very important that each of us help out in whatever way we can. Just think if everyone of us donated $1 that would amount to a lot of money for research and to help the local chapters fund the resources they provide to their communities. There are all kinds of things you can do to raise money....silent auctions, yard sales, penney wars, etc. Talk to the people where you work and see if they will join in on the fun to help raise funds! Some nice companies will even match donations! Ask...it doesn't hurt and you might be pleasantly surprised!

We are happy to announce a new contributor to The Ribbon. We welcome Starr Calo-oy, Author, Speaker, Elder Care Advocate. She writes in what I refer to "People Talk", easy to read and it's like she is sitting right here talking to me. Join us in welcoming her after you read her first article in this issue.

This is also a sad time. My dear friend Linda (Photoljt) lost her father this week. I have been there with her on the phone as she was with me during the time I lost my mother. I also turned on my computer a bit ago and saw that former President, Ronald Reagan lost his struggle with Alzheimers. This things hurt my heart and at the same time I'm at peace knowing it because I know that now they no longer have this dreadful disease.

A bit of an announcement! Our Kevin, the webmaster, is working fulltime for NASA this summer and will continue to work next year as he finishes his college education! WAY TO GO KEVIN!!!! We knew you had a great future ahead of you!

I guess that's it for now. Know that I keep all of you in my heart each and every day.

Jamie


The Many Challenges of Sundowning

by Starr Calo-oy

"Exactly what is "sundowning"? I have been asked that question many times. First, I'll tell you what it is not. It is not a medical term, a disease or a syndrome. It is a symptom of dementia and occurs just as the sun begins to go down each day.

Regardless of where the dementia victim is living, they become more confused, restless and insecure late in the day. Experts beleive one of the possible reasons for this phenomenon may be due to a lack of sensory stimulation as the light changes intensity in their environment.

If you were blind, for example, you would be especially sensitive to the routine noises of the morning, noontime and the decrease of those noises at night. These patients feel the same way because they are handicapped in a different way. Familiar and secure sounds lessen as the day draws to a close and the security that those sounds provide, disappears in the shadows. They become more frantic and exasperated in trying to restore their sense of familiarity. Just as a small child is afraid of the dark or of being left alone, the dementia victim, who cannot verbally express their fear, will begin to pace and perform repetitive motions instead. They regress to childlike behavior and this is why they will scream, throw things, call out for help, spit, kick, bite, cry, curse, ask repetitive questions and try to "escape".

This may be why they appear to have their days and nights "mixed up". They tend to sleep very well during the day because they are relaxed; secure. Also, researchers found that people with dementia had an increase of these symptoms during the winter months and daylight savings time changes. The patients got up at night to urinate, eat or drink with more frequency at these times.

End of day fatigue also plays a major role in adding to increased agitation and aggression. It's almost as if they start each morning with an emotional tolerance bank account full of energy, toleration, cooperation and compliance. By the end of the day, after they have had to cope with trying to sort out what was real, what was true, coping with their fear and just surviving they become "overdrawn". They have no more to give and because they no longer have any sense of social awareness and they are exhausted, they have a catastrophic emergency.

Helpful tips to help you with your loved one

  1. Keep them active in the morning and if you have to lay down next to them to get them to take a nap after lunch, then do so, at least until they fall asleep. If they rest during the day, they will have more in their "bank account" to draw from in the evening.
  2. Pay special close attention to ensure they get to the bathroom when needed in the evening, have water to drink so they aren't thirsty and that they do get full at suppertime. Many times, they will have a much more difficult time expressing their needs in the evening which will lead to increased agitation.
  3. Try to get into the habit of taking them outdoors after supper each evening for a change of scenery and fresh air. This can be calming; to even sit in a swing and watch the children play outside.
  4. Keep the noise from the tv to a minimum. Put some nature music or light jazz on softly and bring them the coloring book and crayons.
  5. Close to bedtime, give them a light snack and some warm milk. They will associate this with bedtime.
  6. Put them to bed at the same time every night. No rich sweets or caffeine either.
  7. Ask their doctor for a nighttime aid to help relax them and then give it to them 45 minutes before you want them to be asleep.
  8. Make sure that they are surrounded by a great deal of light in the room they are in prior to bedtime. Have a lamp or a nightlight on all night. You would think the light would have the reverse effect and keep them awake, but it doesn't. I have found that they will sleep all night, without waking up at all, if I keep a lamp on.
  9. When you put them to bed, hug them, kiss them and stroke their hair as you softly whisper something like "I love you so much, you are wonderful and mean so much to me. I'll fix you a delicious breakfast in the morning. Now, you get some sleep, I'll be in the next room. I love you, goodnight". Do not close their door but do close their closet doors.

Just try each one of these strategies until you find one that works. Every person is different and their set of challenges are unique, but they are all in dire need of someone who cares enough to explore on their behalf.


Starr & Bob Calo-oy, authors of The Caring Caregivers Guide to Dealing with Guilt are delighted to share their hands-on experience with the public now. For the past 15 years they have cared for numerous elderly patients in their own home so they speak, teach and write from a wealth of hands-on experience.

You can read more about them and order their book at their website: Caregivers Guide They are truly amazing people!


In Passing: Those We Must Remember

It is with great sadness that I tell you about the passing of Richard (Dick) B. Tucker. He is the father of Photoljt known to us as our Linda. Linda opened The Gathering Place, online support chat to help caregivers around the world. In The Gathering Place she has shared with us stories of her dad and how her mom has been the caregiver for many years now. She let us know that her dad was a plaid shirt, blue jean wearing guy and that he always had a toothpick in his mouth. He was a John Deere guy and enjoyed collecting those items.

Linda has been there for so many of us during our caregiving years and during our grieving time and during the time we come to know that we must now give back what was given to us.

Now it is important for us to give back to the "Caregiver to the caregivers" and show her the love she has shown to us.

Please join us in sending your condolences and sympathies to Joann, Dick's loving wife of many years, Dick's son, Ray and his wife and children, and to Linda.

Our hearts go out to you at this sad time and God Bless You for allowing the donation to further help the cause in research.


Former President Ronald Reagan Dies at 93. He died Saturday after a long twilight struggle with Alzheimer's disease.

Please join us in sending your condolences and sympathies to Nancy, Patti, and Ron. We know the heartbreak feel.

It just shows that no matter how rich or how poor, how educated or uneducated Alzheimer's can affect any of us. We all share in the Long Goodbye.


Dealing with an Aging Relative

Parts 2 and 3

With Elderly, Look for Positives When Broaching Difficult Subjects

Last week's column began a three-week look a caring for elderly loved ones, something almost a quarter of adult Americans are doing.

I continue this week with ways to approach the uncomfortable subject of assisted living, nursing home care and other necessary plans before a crisis occurs. An American Association of Retired Persons survey found that two out of three adult children had never had such a conversation with their parents.

The advice here comes from Linda Rhodes, a gerontologist and creator of a kit for caregivers, as well as a panel of experts for Home Instead Senior Care, a company offering support services to the elderly with several offices in Middle Tennessee.

Rhodes says many adult children avoid the conversation because they know the parent fears loss of control. But planning actually ensures parents more control.

"Approach the subject of care in a positive light, saying, "I want to be a vehicle for getting things done the way you want. If we don't know your wishes, we can't follow them," Rhodes says.

She suggests presenting the scenario, "What if you have a stroke?" to open the topic of which nursing facility they would prefer. Or, "What if you broke a hip," explaining that nursing homes are where hospitals now send people for rehab.

This can be a less threatening way to get a parent to look at and consider these facilities.

Other "what ifs" that can be helpful are:

  • What if you're sick and need home-health care? What agency should be called?
  • If it's not safe for you to live alone, what assisted-living facility should we visit?
  • If you can't get around and do some things for yourself, but can still stay at home, what kind of services would you want to help you with daily living?

If they have friends who have moved into assisted living, Rhodes suggests taking them to visit those friends every few weeks. They see the facility and lifestyle in a non-threatening way.  "Go around lunch," she says. "Things often evolve this way."

If for safety or health reasons, the time has come for an elderly relative to move into such a facility, the family doctor or clergy can often help.

"Talk to the doctor ahead of time," she says. "Say, "I need your help on this." They can say, "Marion, you can't stay in your house. It is jeopardizing your health. You can't do this to yourself or your family. It's putting the kids through stress. You need help with medications." She adds that some doctors will even write the need to move and get more help as a prescription.

Another way to open a difficult conversation is to use a friend's situation as example. This can be helpful for all sorts of topics, from health care to finances. "If you're trying to encourage them to get their business in order," Rhodes says, "you can say, "Look at your friend who worked so hard for the land and the house and now, because there's no will or talk with his kids ahead of time, the government is taking that land."

"You can also use yourself as example, saying, "I just did my will. I always thought it was costly or complicated and it wasn't. This is what I learned."

"It's giving them the information, but not telling them what to do."

If they don't want to talk about it," she says, "ask them to at least write something down." Tell them it's OK that this is private to them, but you'll need this information to get them the best care.

The bottom line: "Unplanned decisions are uninformed decisions," Rhodes says. "In the heat of a crisis, they are rarely in anyone's best interest.

Siblings Can Avoid Resentment By Sharing In Care of Parents

I've devoted the past few weeks of this column to issues related to caring for elderly loved ones because it's something almost one quarter of American adults do these days.

It's a topic I pledge to revisit in the future, too.

Much of what I've written in this series has focused on the care recipient: how to open difficult conversations about the future, etc.

This final week, however, I want to tell you about avoiding a major pitfall for families: Who takes responsibility for caregiving? How this is ultimately handled can divide families or bring them closer together.

"The Home Instead survey shows that caregiving usually falls upon the female who lives the closest," Rhodes says. In most cases, that is the oldest, grown daughter, causing her to resent other family members who don't help out more often.

While having one person "in charge" may be unavoidable because of geography and other circumstances, that person need not shoulder all the responsibility. The fact is, siblings who aren't as involved likely have no idea how much time and energy is required. A simple task such as checking on an insurance claim can easily consume a morning in phone calls. Taking a parent to a doctor's appointment might require an entire day off. Even nursing home residents have to have family assistance if there's a doctor's appointment outside the facility. All this falling on one person can be draining.

Rhodes points out that in many cases, it's not that siblings are unwilling to help, it's that they may not know how. We wonder why so-and-so doesn't offer assistance or why the long-distance sibling doesn't come so others can have a break, when it may not occur to them. It's up to the primary caregiver to tell them.

"What I recommend is try to do it as a team approach and do it early on," she says.

She suggests the primary caregiver make a list of all the things that need to be done--not just the visits, but insurance, tracking down resources, calling doctors, paying bills, etc.

"Be specific, and hand it to them. Then you all look at the list and decide who will do what. Set up a schedule of what needs to be done, when. Those out of town can take a big part by making phone calls."

Rhodes acknowledges family tension can make cooperation more difficult, but not impossible. "If there's a lot of old baggage, like siblings that don't get along or different ones are at different places with the parents. There may be anger at a parent. All of that makes it much more difficult.

"If that's the case," she says, "it might make sense to get some professional to facilitate a discussion with family members so that caregiving doesn't all fall to one."

Rhodes warns that many times the primary caregiver creates her own trap by thinking it's just easier to do things herself. "Also, a parent can get attached to the primary caregiver," she says. "This is especially true if you're dealing with dementia, where the person might be frightened. You get drawn into this cycle of you're the caregiver and they want you to do whatever it is. So the rest (of the family) lets you do it. To avoid this, you have to be open and direct with your siblings. There's a role for everybody."

Telling family members you need to take a break is also important.

"Say "When can you come? You can have my house, but I'm out of here." Be pleasant about it, but make them understand you need a break," Rhodes says.

"Besides, if they're in the loop of understanding how much is involved, there's more of a chance they'll start participating."


Beth Stein writes about family issues for The Tennessean. Reach her at steincol@aol.com


Hugs and Peace,

Karen and Jamie

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