Volume 2, Issue 14 - The Ribbon Newsletter

Volume 2, Issue 14
July 23, 1999

This issue is to remind us all, whether we are new to caregiving or whether we've been doing it for years, that we need to care for ourselves as well as our loved one. I think we all need to be reminded of this once in a while. We do tend to get caught up in the different situations that come up and forget ourselves.

Signs of Caregiver Distress

Taking care of a loved one with Alzheimer's disease is very stressful. Caregivers react to their stress individually. What follows is a list of possible reactions. If you answer "yes" to any of these questions, you're suffering caregiver distress. The more yes answers, the closer you are to burning out. Take some time to consider how you might take better care of yourself. Material available throughout TAKING CARE...OF YOURSELF can help.

Have you withdrawn from close friends?
Fewer visits? Shorter phone calls? Routine refusals of invitations? The responsibilities of caregiving almost always involve seeing less of acquaintances, but if you've withdrawn from close friends, you're in distress.
Have you given up your favorite pastimes?
The demands of caregiving always mean less time for gardening, movies, hobbies, and other activities you enjoyed before you became an Alzheimer's caregiver. But if you've cut them out entirely--or almost entirely--you're in distress.
Are you feeling persistently blue, irritable, helpless, or hopeless?
These are classic symptoms of depression. Of course, taking care of anyone with Alzheimer's disease is inherently depressing. It's awful to watch a loved one decline, and have to take over management of another person's life. But if you develop any of these symptoms, you're in distress.
Do minor upsets make you cry?
This is another symptom of depression. It's natural to be moved to tears as you watch the affected individual lose some long-cherished skill, for example, pie-baking or woodworking. But if you find yourself weeping frequently over inconsequential things, you're in distress.
Do minor upsets make you furious?
Are you yelling at your loved one more lately? Do you have increasing difficulty controlling your temper with other people? It's natural to go over the edge if the Alzheimer's sufferer breaks a precious family heirloom. But if you fly off the handle when a friend arrives 15 minutes late for a date, or when your children leave some dishes unwashed, or when the person ahead of you in the supermarket express checkout line has 11 items instead of the limit of 10, you're in distress.
Have you gained or lost more than five pounds in the last few months?
Weight changes are another sign of depression-stress-burnout.
Do you have trouble sleeping?
Caring for a loved one with Alzheimer's disease can cause periodic anxiety dreams, nightmares, and unwelcome wake-ups in the wee hours. But if you experience frequent sleep disturbances, you're in distress.
Do you feel exhausted all the time?
The demands of Alzheimer's caregiving are exhausting. But if you frequently wake up feeling you can't get out of bed despite a good night's sleep, you're in distress.
Do you seem to be getting ill more often than you used to?
The immune system is what protects us from illness and helps us recover when we get sick. Many things can impair immune function, among them: fatigue, depression, and stress. It's natural for Alzheimer's caregivers to catch an extra cold or two a year because of the demands of caregiving. In fact, a 1996 Ohio State study showed that flu shots were less effective in Alzheimer's care givers because the stress of caregiving had impaired their immune function (Science News, 4-13-96). But if you seem to be getting one illness after the next, and if they linger longer than you think they should, you're in distress.
Have you recently developed any chronic health problems?
These might include: headaches, back or neck pain, stomach distress, diarrhea, constipation, or heart palpitations, among others. It's natural to experience any of these from time to time. But if they become persistent, chances are you're in distress.
Do you ever think: "I can't take this anymore?."
It's natural to react to life's daily pressures and absurdities by occasionally feeling: "Get me out of here." But when escape fantasies become frequent, you're in distress.

Getting the Help You Need

Physicians, counselors, and social workers who work with Alzheimer's caregivers are unanimous in the opinion that caregivers must arrange time off for themselves at regular intervals, preferably frequently. But some caregivers feel that spending time away from the affected loved one is "selfish." On the contrary. If you want to provide quality care, time off, or respite, it is an absolute necessity. Here's why:

Time off allows you to rest and recharge your physical and emotional batteries.
Alzheimer's caregiving is a 24-hour-a-day job. But no one can work 24 hours a day and perform well over time. You need some respite for both your own sanity, and to maintain quality care. Do things you like to do. Have fun. You deserve time off. Take it.
Time off allows you to invest some energy in your other relationships.
Spouses, children, friends, and other relatives--all those relationships require nurturing. The world of the Alzheimer's caregiver often collapses into just you and the affected loved one. When taking care of someone with the disease, it's natural to put relationships with acquaintances on hold. But don't do that with people who are important to you. You need them, and they need you.
Time off allows you to attend a support group.
Support groups are a godsend for caregivers. The latest research shows that the support, suggestions, and resources they provide can delay nursing home placement by about a year.
Time off allows you to make arrangements for the affected individual.
It takes time and focus to deal with many of the implications of Alzheimer's caregiving: financial and legal matters, visiting agencies, daycare centers, and nursing homes, etc. If the person with Alzheimer's is with you, you may not be able to concentrate on matters that deserve your undivided attention.

Of course, taking time off requires making arrangements, and often paying for respite care. Like so many other aspects of Alzheimer's care, the key is to get organized. Look at your loved one's remaining abilities. Decide what kind of help works best for the person and for you. Then look at your week, and arrange to have some blocks of time to yourself.

Here are some suggestions:

Consider non-caregiving help.
You might want help caring for the affected person. Or you might want help with non-caregiving chores so you can devote your time and energy to Alzheimer's care. In general, it's easier to arrange for non-caregiving help because it's less demanding physically and emotionally.
If you love to cook, or garden, or do laundry, or clean house, by all means, keep doing them.
But most people would gladly give up at least some household chores if they could, especially when they're preoccupied with Alzheimer's caregiving. Family and friends might help with non-caregiving chores, but you might want to "save" them for caregiving help.
Consider hiring a neighborhood teen to tend your garden, shovel snow, run errands, or do other chores for you.
Teens are often glad to work for the minimum wage, and in addition to making money, they gain invaluable experience about life by being around you as you care for your loved one. Incorporating neighborhood teens into your care plan also helps your neighbors adjust to the idea of having a person with Alzheimer's in the neighborhood.
Consider hiring a neighbor to help with your housekeeping.
Compared with teens, homemakers, retirees, disabled people or other nearby adults with time on their hands can manage more responsibility--and may not charge much more either. A network of nearby helpers can work wonders for your peace of mind when minor emergencies arise. And neighbor-helpers help the neighborhood adjust to having a person with Alzheimer's disease in the area.
Consider delivery services.
Most cities have grocery-delivery services for the elderly, disabled, or for people who simply would rather not shop. An increasing number of restaurants deliver, and many areas have Waiters on Wheels services--special services that publish books of menus from selected restaurants, pick up meals you order, and deliver them to you. A few take-out or delivered meals a week can be a tremendous help. Many areas also have low-cost Meals on Wheels programs for the elderly and disabled.
Caregiving help from family members.
This can be tricky. Sometimes, as it becomes clear that the affected person can no longer live independently, family members promises to "be there for you" when you take the loved one into your home or move in with the person. They may come through. But sometimes vague promise don't translate into real help. This is not only disappointing. It can also cause deep resentments, especially if the promise of help played a role in your decision to take on Alzheimer's caregiving.

If at all possible, before you begin caregiving, sit down with relatives who say they want to help and get them to commit to specific times on specific days, or specific chores. Ideally, get these commitments in writing. Asking for specific written commitments does not mean that you mistrust your relatives. You are about to embark on one of the most challenging tasks people undertake. You need to know exactly what kind of help you can expect. When commitments are left vague, misunderstandings are much more likely. Get it in writing.
Share-care.
Who knows as much as you do about Alzheimer's caregiving? Other people who are doing the same thing. If you belong to an Alzheimer's support group, perhaps you and another member can arrange to take turns giving each other time off by caring for both of your loved ones. Of course, this may be tough for the person doing the caregiving. But depending on your loved ones' stage of the disease and they get along, they may help amuse each other and take pressure off the caregiver.
Caregiving help from friends.
This can also be tricky. Friends often want to help, but it can be difficult to know how much help they are truly willing to provide and how often. Some caregivers wind up imposing. Others are afraid to ask for help for fear of imposing. The best course of action is to have a heart-to-heart talk with close friends before you become a caregiver. Tell them you're seriously considering caregiving. Talk about your feelings and the changes the move will bring to your life and your friendships. Don't ask for help, but if a friend offers, ask for the same specifics you might ask of a relative. Don't be surprised if friends follow through for a while, and then withdraw.
Help from religious or social organizations.
Church or social organizations (Lions, Kiwanis, Junior League, etc.) may be willing to help out from time to time, especially with specific projects, for example, spending one day moving your loved one from independent living into your home. Assess your extended social support network, and then consider how to use it most strategically. Church groups and other clubs may not be willing or able to commit to ongoing help, but every now and then, they might be very helpful.
In-home aids.
Many different types of people can provide in home care. The most skilled--and expensive--are nurses. Nurses can be invaluable if the person has a physical illness or disability that requires nursing care. If so, Medicare may help pay for in-home nursing care. But most people with mild to moderate Alzheimer's disease don't need highly skilled nursing care. They're reasonably healthy--except that they have Alzheimer's.

Other types of in-home helpers function more on the order of paid companions and sitters. Their training varies, and some may have had no formal training at all. Get referrals from your Alzheimer's caregiver support group, the Alzheimer's Association, other local senior citizens organizations, social workers, or religious organizations.
Adult daycare.
Adult daycare not only provides welcome respite for caregivers, but quite frequently, it also provides clear benefits to people with Alzheimer's disease. Just as you need time away from your loved one, people on the receiving end of Alzheimer's care often feel a need for time away from their primary caregivers. They often enjoy being around people their own age in a facility that caters to their needs and interests in ways you may not be able to, for example, by playing the music they grew up with. Alzheimer's caregivers often find that once their loved ones get used to going to adult daycare, they look forward to it, have fun, make friends (to the extent they can), and return home more relaxed.

Adult daycare centers offer a variety of group activities, among them: music, games, stories, and exercise, along with lunch, snacks, and sometimes pick-up and drop-off. Different centers offer different programs. Visit the one(s) in your area and see which one you like best.

Evaluate adult daycare centers as you would a nursing home.But because your loved one does not live there and may only participate a few days a week, you don't have to be quite as picky. Adult daycare centers typically admit participants with a variety of health problems, but the one(s) in your area may or may not welcome people with Alzheimer's disease. On the other hand, some centers specialize in people with dementia.

Daycare can also help pave the way for eventual nursing home placement. Some daycare centers are affiliated with nursing homes. The combination often eases the transition into nursing home care because by the time the person needs to become a resident, the facility and staff are familiar.
Short-stay nursing homes.
It's a special tour, or a big anniversary, or a major family celebration halfway across the country. You'd love to go, but your loved one with Alzheimer's is not up to the trip, and there's no one willing to be the caregiver for the 10 days you'd like to be away. Some nursing homes are set up to allow for short stays. Only a minority of nursing homes do this, but if one near you does--or even one a few hours drive away--the service can be a wonderful respite for you.

Happenings

From CAREVOICE

Dear Caregivers,

If you are going to be in the Grand Junction, Colorado area, the Greater Grand Junction Chapter of the Alzheimer's Association has invited me to present and sign my newest book, "Where's my shoes?" My Father's Walk Through Alzheimer's on Saturday, 24 July from 2 - 4 p.m. Baird Brown's offices (Elder Law Attorney) call 970-243-8250.

Then I will sign books from 6:30 to 8:30 p.m. at the Mesa Mall at the AARP site near the Food Court at 2424 US Highway 6 & 50. If you are there, come by and say "hello!"

There may be media interviews which will air on the 5 and 10'oclock news.

On Wednesday evening, the 28th of July, I will do a presentation at Verbatim Books in Vail, Colorado from 5 - 7 p.m. This is being co-sponsored by the Rocky Mountain chapter (Denver) of the Alzheimer's Association. Trivia: Verbatim hosted Peter Jennings and Tom Brokow and drew 500 and 300 people respectively. Verbatim is located on 450 East Lionshead Cir 970-476-3032.

Please come and introduce yourself if you can attend! I would love to see you!

Brenda Avadian
The Caregiver's Voice
Speaker and Author
"Where's my shoes?" My Father's Walk through Alzheimer's

I contacted one of our readers recently to get information. I thought she was the person who had mentioned a while back about printing up a business card to hand out to people who may deal with our loved ones. I thought it was a great idea since you don't run the risk of embarassing your loved one with an explanation. Our sweet Emjay215 took the time to scan a card and emailed it to me. I will not add the picture here since many do not use AOL. I will instead type it all in. I hope it will be useful to all.

Side #1

Please Be Patient....
The person with me
has Alzheimer's Disease,
and may require a
few extra moments.

Thank you for understanding.

Side #2

A word about Alzheimers...

Despite extensive research, Alzheimer's remains one of the most
misunderstood afflictions in the world today. Over 4 million Americans
suffer from its effects, which begin with forgetfulness and lead to severe
mental and physical losses requiring total care.
Its onset is subtle, and is often mistaken for senility, as it almost
always affects older people. It is progressive, irreversible, incurable and
ultimately fatal. It is not contagious. Some forms are hereditary.
For more informations, write to the Alzheimer's Association,
919 N. Michigan Ave, #1000. Chicago, IL 60611, or call (800)272-3900

Note: This card is available for download in Microsoft Word format. To use these files, click on the first link below (card front). Open the file if it doesn't automatically appear. Next, print the document. Place the printed pages back in the printer's paper tray so that the page back can be printed. Return to this page (if the doument appeared automatically, press the "Back" button to return to this page, otherwise, close Microsoft Word). Repeat these steps, this time by selecting the second link (card back).

Card Front Card Back

E-Mail Box

From JCohen8115

Hi Karen,

I have been getting your newsletters for quite some time now, and I actually spoke to Jamie with my mom about a year ago. I am 25 years old, and for about 3 years my grandmother moved in with my parents and I when I was 17. She now is in a nursing home not far from my parents, and I do visit with her often. Jamie said I was such a special person, being that I cared and was an active caretaker for my grandmother when she lived with us. I had such hard times over it, but I also made it as enjoyable too.

My grandmother had a mini-stroke when I was 17 and she moved in with us after being on her own for 15 years after my grandfather died. It was such a big adjustement for all of us, my parents, my grandmother, and myself. I was a responsible kid before that, and people always told me that I was more mature than most kids my age.

Over the three years when Grandma lived with us, her health deteriorated, as well as her mental status. I think we all tended to look away with alot of things, saying it was just normal and such. My mother and myself were her primary caregivers. I remember numerous occasions sacrificing my weekend nights so my parents can go out, and give them a break from staying home with Grandma (she wasn't very happy about being left alone). And I was only 17. My friends grew patience with the whole thing, and if anything, enjoyed coming over and talking with my grandmother. I incorporated her into alot of things, shopping for starters. I don't think I didn't go to the mall every Wednesday for senior citizen discount day :)

I always had a special relationship with Shirley (my grandmother) since I was her only grandson. She lived in Brooklyn, NY and we lived in Westchester. Before her mini-stroke we used to visit every other weekend, and I always looked forward to it. I think I reminded her alot of my uncle who passed a way a few years before from cancer. All in all, my grandmother went through alot, immigrating before the world war, losing her husband and sons both at young ages. And she always had strength and courage. I think that is why it was so hard for me to see the signs of Alzheimer's starting.

When I left for college, I felt bad that it was going to be my mother primarily as her caretaker alone. She didn't have the luxury of a fellow sibling or other family members to help out with. I felt guilty for leaving, but over time I got over it and learned I was not abandoning anyone. It was odd for me to make plans without having to think of other's schedules. Don't get me wrong, my parents never made me stay home, or take Grandma anywhere, I wanted to do it. I wanted to do it primarily for her, but to also make sure my parents had a life too. I was told I was the most unselfish teenager possible :)

My parents moved to Florida my freshman year, and Grandma moved at the same time to an assisted living center here near my parents in FL. That is when the Alzheimer's really kicked in, her health was pretty good and she recovered well from the stroke. I remember talks with her on the phones led to hangups for no reason, or choppy phone conversations. It upset me greatly, but I always put on a happy face with her. She never vocalized or looked frustrated from Alzheimers, but I know inside she was.

Now, 5 years later after their move to FL, I am too now in graduate school down here, about 1/2 hour away from Grandma, and the same distance to my parents. She is in a nursing home, unable to walk by herself, and she doesn't speak. She still smiles when she sees me, and all the staff say she looks so happy when my mother and I come to see her as often as we do. I talk to her just as if she was talking back to me, telling her how school is, and what is new in my life. It saddens me to see her like this though, I have my up and down days with it. And I know my mother feels the same, if not alot worse about it. My sister got married four months ago, and my grandmother wasn't there to see it. It ripped all our hearts out that taking her to the wedding would have been to "stressful" for her, and sometimes she has really long days of just not looking happy and crying at times, and then cheers up quickly. I can tell at times she tries to say things also, and it hurts even more.

I don't come to the chats often, since my schedule is really hectic, but I find as much time as possible to see Grandma. when I get finals and such, I feel bad not for visiting, but my friends say she would WANT you to study, and I know she would. I still picture her responses when I ask questions. I miss our phone talks and such, and our trips and conversations. I was also jealous for a time how my older sisters had those long talks with her when they were in college, and I never had that at that age. My grandmother helped me mature into the man I am now, and I don't regret anything I have ever done for her, through the aggravation, anger, guilt, and other mixed emotions I have felt for so many reasons. When I felt aggravated, I felt guilty afterwards. I have learned to cope pretty well over the past few years expecially, I guess because I am older and had more time to let things work in my mind and heart.

My favorite line from people is when they say "I know how you feel" when they have never had the responsibility of taking care of a loved one. So many people at my grandmother's nursing home talk, walk, sing, laugh on their own, but their family never come to visit and appreciate it. I would love to talk more about it, either IMs, emails, phone, whatever. What you guys do is a special blessing with your chats and your mailers. It takes special people to have the courage and strength that we have. Sorry if this seemed so long and dragging, I just have never really told my feelings all out on paper, except when I spoke to Jamie before a few times. She is a really special lady also, and told my mother she had an enormously special son :)

Once again, thanks for all you do, and helping others keep the courage and strength for helping our loved ones live better and continuing fulfilling lives.

Sincerely,
Jason :)

From sundance1@centuryinter.net

I have worked in a nursing home for 20 years. I started when I was 19, so I have basically grown up while there. I wrote in once before in defense of nursing homes, and probably will always feel I need to respond to those who say that "my mom (or dad) never wanted to go to a home" or "I could never put mom or dad in one of those places." You make my life sound like a terrible thing. Like a HOME or one of THOSE places is a criminal thing. I am proud of the work I have done. Proud of the moments of joy I have been able to bring to those with dementia, and proud of the special people who do that very difficult work. Not all nursing homes are bad places. They can offer a wonderful extra to the person with alzheimers and to their families.

I now come to the point where I need a break from the stress of day to day caregiving to those with dementia and I feel like I'm leaving my family. It is very important to recognize that everyone needs a break from the demanding work of caring for someone day after day. Even professionals. I know that I will go back to hands on care eventually, I can't see myself in an office with a computer forever.

What makes me smile is the family members who say that I don't belong in an office, that I belong with my "family" and that I'll be missed. Please , if you haven't already done so, go visit a nursing home with an alzheimer's unit. Some of them are VERY special places!!!!!!!! When you come to the point where you need a break, take one, before everyone regrets it! I've seen people who didn't take one do things to their loved ones that they would NEVER do otherwise. Most nursing homes offer daily and/or weekly respite care too. Check it out, and please open yourselves to the nursing homes of today, we've come a long way in 20 years. thank you for letting me vent one more time. Some day I would like to see something positive on tv or in the papers about nursing homes, but that's not news.

If I can encourage one person to visit a nursing home and see the extraordinary things that we can do, I have done my heart a favor.

From NO900

Just finished reading latest Ribbon and really needed to be enlightened by the 10 A"s especially ARGUING IS USELESS. After two years I am still trying to change what cannot be changed by arguing with my husband. I now realize that it us useless to argue with a person that has dementia. He spends more time saying he is sorry and he don't even know what he is sorry for. Believe me I am going to try very hard to accept what cannot be changed. I feel so frustrated most of the time and it rubs off on him causing anxiety. Only once when I slapped him hard on his shoulder, he grabbed my hair and pulled it, lost his balance and fell with me landing on top of him.

I have bruises from the fall that he noticed and asked how I got them, when I told him he had no recollection of the incident. He has been calling the security number and telling them that he doesn't know where I am and he doesn't know whose home he is in. I explain to them that he has dementia but I am not always aware that he dials. I have disconnected the kitchen phone and turned off all the ringers but I have a message machine to take incoming calls. I don't know what else I can do to stop him from using the phone. The neurologist said I need to get away but that is not possible as I wouldn't wish him on anyone. I sometimes wonder how much longer I can go on without exploding. When we go out in the car he constantly tells me I turned the wrong way, or how do we get home, never stops giving orders. I just had to get this off my mind and I am amazed that there are not more complaints like I have, Thanks for listening. NO900

From Homestill

Thank you Karen for sending me the Ribbon, I took some time to read some of the past articles and one in particular hit home, it was about caregiving and all that we feel. As I read it I was amazed how closely it discribed all the feelings that I thought were unique to me alone. My husband was diagnosed with Alzheimer's in 1991, he was 57 and he is now helpless, he can still walk but has to be fed, dressed and helped with everything. He can no longer speak except for a few words (mostly swear words) and doesn't see well either. I am at present starting to look for nursing home care, have been doing everything myself until a couple of months ago I started hiring "in home care" a couple of times a week. I just started also to visit the chat room and have mostly just watched as it is all new to me. I would like to continue as I'm sure I can learn from the others and maybe at some point help someone else. This disease is so devastating,we all need to lean on each other.

Thanks again, Carol

From Currby4

dear karen,
i am sending a reply to the lady that felt the need to attack me. everyday with my mom is a struggle......... i in no way implied that people who choose nursing homes were wrong. i was simply asking for help/sympathy maybe.......becuase i know what needs to be done but can't bring myself to do it. am i the bad person?? i didn't think so.
if you have the ladies email address perhaps you can forward it on to her.
yes i am upset and sad that someone would say those things as if i had no feelings for what everyone is going thru.
hope i haven't bothered you,
laura

to rita..........
never would i put to shame anyone that chooses the nursing home for their parent. if my letter came across that way then you certainly took it wrong. everyone involved in my life tells me what you wrote. i hear it all the time.
i don't think i deserved to be spoken to like that. everyday of my life is a struggle and you don't know me. i was simply stating that i was having a hard time making the decision.

thanks, laura Currby4

From Piano kf

Hi Karen and Jamie---I want to take the time to THANK-YOU for all the support and love that you guys have given me over the past few years. My mom passed away in April, and it is just too painful to read the newsletters. Will you please take me off the list, for now. I appreciated all the info that you haved shared with me, and I will continue to pray for all the caregivers in "cyberspace"---God Bless You, love, karen

From Emjay215

Hi buddies...

I don't make it into the chats very often anymore. Mom keeps me busy in the evening. She gets pretty lonely when I'm not sitting next to her watching tv and keeps pacing back and forth into the computer room until I join her. We keep going along. She still goes to the adult day care while I work. I usually have some time either early in the morning or before she comes home to check email and send off jokes and things. If any of you wish to be taken off my mailing list, please don't hesitate to let me know. I understand how email overload can be amd do not wish to offend anyone.

But please keep your mail coming to me...I enjoy the jokes and other info.

Thanks...MJ (MaryJane)

Hugs and Peace,

Karen (KMenges581)
and
Jamie (DrMOM1955)