Volume 5, Issue 15 - The Ribbon Newsletter

Volume 5, Issue 15
July 22, 2001
www.TheRibbon.com
1104A Murfreesboro Pike PMB 114
Nashville, TN 37217-1918

ATTENTION!

Karen will be sending out an email concerning The Gathering of Friends. In it you will find the dates, motel info, etc. We hope everyone will consider making the trip if it is possible for you. We have already had some responses and several have already booked their flights. We are so looking forward to seeing everyone in Nashville, TN in October!!
Karen, Jamie and Linda(aka PHOTOLJT) of The Gathering Place will all be here and we are waiting word on Kevin (akaWeather91) our website manager. We hope you all are as excited about meeting us as we are in meeting you.

Traveling with the Alzheimer's Patient

Have you thought about a vacation lately, but then decided against the idea because you are caring for a loved one with Alzheimer's disease? Well, I have good news! It is very possible to travel with the patient by planning ahead and anticipating the patient's needs. I've found a lot of great tips on traveling with the Alzheimer's patient, and I would like to share them with you!

Traveling Tips

First of all, you should consider the stage of the patient's illness, behaviors that may affect traveling, and what type of things you can do to make the vacation enjoyable for everyone.

Realize that even though you are on vacation, you will have many of the same responsibilities you have at home. It will be to your advantage to take along another person to share in the caregiving duties with you.

You may want to think about vacationing in ways the patient was accustomed to before they developed Alzheimer's. For example, if the person has never been on a plane before, it may be wise to drive. If the person has never been to a beach, you may want to steer clear of that sort of vacation so as not to get the patient scared and agitated. Try to set up a vacation similar to ones that the patient has taken in the past.

It may be best to plan your vacation in small out-of-the-way places, rather than to places with a lot of people and stimulation. The crowded, busy places could possibly make your loved one scared and agitated.

Avoid fast-paced sightseeing trips. It would be much better to plan a trip that has as few changes as possible. Escorted tours would be fine as long as the other members of the group realize you are caring for an Alzheimer's patient and understand that you have caregiving duties.

If you are not sure as to how your loved one will react to traveling, you may want to take a short trip just so you will know what to expect.

Try to arrange your accommodations so that if you have to leave early because of illness or intolerance on the part of the patient, you won't be held responsible for paying even if you don't get to stay.

Make sure that family members at home have a copy of your itinerary. It is also a good idea to locate doctors along your trip route, just in case you would need medical help for your Alzheimer's patient.

Be sure to advise the airlines, hotels, restaurants, guides, etc. that you are traveling with a memory-impaired person. Some airlines can arrange for a wheel chair and restaurants may be able to serve special meals for your patient.

Make sure your patient wears some sort of identification at ALL times. The easiest way to do this is to have a medical ID bracelet engraved with the patient's name, address and phone number. You may also want to have something concerning the fact that the patient has Alzheimer's or is memory-impaired engraved on the ID.

If you are touring with friends or local groups, you may be able to rely on help from them on occasion with your patient. Never leave the patient unattended for ANY reason, and never ask a stranger to keep an eye on the patient. The stranger may not know how to react to difficult behaviors, plus the patient my become scared or agitated by someone he or she doesn't know.

Make sure you take safety precautions when it comes to dealing with your Alzheimer's patient. For example, if you are traveling by car, it would be useful to have automatic locks or you may want to simply remove the locks from the patient's side of the car. You may also want to keep in mind that power windows may be a danger to the patient.

Since you are the primary caregiver, you can decide how to tell your loved one that you are taking a trip. You may want to talk about the trip several days in advance, or it may be best to tell the patient just before you leave. It varies according to the patient.

If your patient travels better at specific times of the day, you may want to plan your trip accordingly. It would also be a good idea to take breaks along the way for snacks, so that the patient won't become bored.

If you are traveling by air, train or bus, have a friend drive you to the place of departure. Make arrangements with the friend to take care of parking the car and handling the luggage check-in process. It is also a good idea to call ahead to see if your departure will be delayed so that the patient does not have to sit for very long in the crowded, noisy terminals. Also try to bring along something that will entertain the patient in case you do have to wait.

If you and the patient are the opposite sex, you may want to bring along a traveling companion the same sex as the patient for when bathroom duties have to be performed. You can also ask for help from the staff, or another option is to use adult incontinence products during your trip.

Try not to do too many activities in one day. Plan for a single activity, plus a couple of pre-selected alternatives in case you have extra time. Be sure to give the patient time to relax and settle down from one activity before going on to the next.

Try to keep meal times the same as when you are home so it won't be so confusing to the patient. Be sure to order the same type of foods you would normally serve at home.

Make sure you follow the same routine while you are traveling as when you are home. For instance, if the patient is used to showering in the mornings at home, make sure he or she gets their shower in the morning while you are away.

Be sure to consider travel time when planning your trip. Stop and think about how long the patient can sit in one place or if your loved one likes to roam or wander.

Pack some familiar activities for your patient. Some examples are magazines, a deck of cards or a wallet or purse to rummage through. This may help keep the patient calm so that they don't become agitated.

Check the airlines. Some airlines offer discount rates for an escort for a person with disabilities. Be sure to inquire about any special rates such as these.

By using common sense and some of the above tips, it can be an enjoyable family vacation for both you and the Alzheimer's patient!

Beth Creason
Alzheimer's Disease
www.alzheimers.about.com

Before I Forget
The PWiD's Perspective

Thank you for all the sharing by the DASN members in the last Ribbon. There is something that I would like you to consider. As of now I know it is politically correct for you to call people who care for others with dementia,etc., all as caregivers. But, I would like you to consider shifting to the word 'care partner'. Caregiver denotes that I as the person with dementia am now totally dependent and taking, taking, taking -- and of course the reasoning is far an extension of just me. Carepartner could also refer to a doctor, nurse, spouse, lifemate -- anyone who has partnered with you in trying to make your life better. My words are not very with it today, but I did want to share this with you before I forgot again. You and the Ribbon seem to be pioneers, and forward thinking . . . I hope Carepartner is a term you will consider adopting in place of caregiver - My best to you! - Mina

Jan / Mina
Nothing the heart gives away is gone (~)
it is kept in the heart of others. . . . . . ,,,\)/,,,
The Heart Remembers
Jan/Mina's Home page *** DASN Homepage ***

Dementia Advocacy and Support Network

Press Release

Alzheimer's Association Sponsors Patient Advocate

The Alzheimer's Disease International (ADI) will be holding it's annual conference in Christchurch, New Zealand on the 25-27th of October. The Alzheimer's Association of Los Angeles and Orange County (California), are supporting and sponsoring the attendance of a local woman, Jan Phillips. Diagnosed 5 years ago at 45, Jan has become a strong advocate for early stage patient services. As a founding board member of the Dementia Advocacy and Support Network (DASN) she and fellow DASN members will be presenting a proposal to the ADI, plenary address, workshops for people with dementia (PWiD) and will also have a booth and poster presentation promoting DASN and early stage patient support and information. This is a pioneering move for both the local Alzheimer's Associations and the ADI to include, support and sponsor participation by persons with dementia in the conference.

You can contact Jan directly at cwadephill@aol.com for further information or visit her web site Jan/Mina's Home Page

Editor's note: This is a great happening for Jan/Mina. We wish her a safe and productive trip. The Alzheimer's Association is finally coming to realize that they need support the patient as well as the care partner. Congratulations to Jan and also to The Alzheimer's Association.

Email Bag

From sodonovan@email.msn.com

Just a very brief note to say that the 'Signpost to Older People and Mental Health Matters Journal' continues to develop and our readership increase. You might like to let Ribbon members know that articles from our latest issue, 'International Dementia Care', appear on-line at
July 2001: International Dementia Care
http://signpostjournal.connect-2.co.uk/july1.htm

A massive amount of articles from back issues are also available on-line, free of charge, as part of our non-profit making philosophy of reaching out to informal (family) and formal (staff) caregivers and providing them with up to date information and ideas to support them in their role.

Thank you for your time and a wonderful on-line Newsletter.
With kind regards
Simon O'Donovan, Editor

From Datel123

I realize that everyone who reads this newsletter thinks that I literally want to have an article in every copy. This is so not true but when I feel there are things that need to be shared I feel compelled to sit down and write. With the wonderful circulation of this newsletter we receive what better place to place information. Yesterday was no different from any other day until I signed on the computer just before I went to bed and read two postings on the AZ Bulletin Board. First I cried because one of the postings was one that a dear friend of mine had put up regarding her husband's status. The other one was almost as compelling. I sat here and responded to those postings with tears dropping off my face because you see they are both in places that I can't even allow my mind to go. Would our loved ones want to live in this manner? The majority of us at some point in our marriage had talked about what we would want regarding our health and the majority of us have Living Wills in place to protect us from prolonging life. But how many of you knew that if you weren't there when your loved one is hooked up to all of this life saving equipment like breathing machines, respirators, feeding tubes these Physicians think that it is their primary concern to save this life. They do not take into account what quality of life they are saving when all of these heroic measures are being done. They are following that Hippocratic Oath. Thinking with their hearts would be inconceivable. Heaven forbid they don't keep this person alive to have a repeat trip. I have seen it too much at the nursing home. The family puts that loved one in the home, doesn't do routine checks on them, they are called when they get sick and are transported to the hospital. Rarely does someone from that family ever go to the hospital so they are patched up, filled with antibiotics and fluids and sent back to the nursing home to lie in that bed in a fetal position, oblivious to anything in the world around them. They are given Ensure to keep the caloric count up and fed pureed food. They are diapered and dressed by someone other than himself or herself. They have absolutely no awareness of the surroundings. This is all about the almighty dollar, not about the quality of care. I will give you a prime example.

My parents were both in a nursing home. They both started out in the same one but my father was a cold, unfeeling, uncaring person and my Mother had been in the home years before he went to live there. They were in the room together at first, and then they had to be separated because he did not want to be in the room with her. He proceeds to flirt and fall madly in love with one of the nurses from the home and embarrassed my Mother to death over his inappropriate behavior. They were separated and Mother was moved to another nursing home. Soon after she broke her hip and he got seriously ill. He was put in the hospital in ICU and the brother and two sisters there were told that there was nothing that could be done to save him. There was a Living Will in place saying DO Not do anything to prolong my life. The only one who could have stood up to them and the Physician's was in Texas taking care of her AZ husband. Now my brothers and sisters have never bothered to learn about anything regarding living wills, prolonging life or anything informative. Mother wasn't able to be there so the living will was over ridden and he was placed on life support for 9 days while he lay there and literally rotted. They couldn't even show anything in the casket but his face because of the deterioration of the body.

Now I suppose my siblings thought they were doing something that would help. But in their hearts each one of them knew that there was no way he was coming out of that coma and there wasn't a single one of them strong enough to say No. So unless you are there, standing toe to toe with your Physician regarding the measures to be taken, they will take your power away from you. It is done every single day of the week. I will never allow any measure be taken to prolong my husband's life because we decided a long time ago this wasn't what we wanted. There will be no antibiotics, nothing. We all know the stages that they progress through before they get to the point to where this woman's husband was. Having to see him that way has to be breaking her heart. She is being forced to do this now and if she weren't there should he get worse and be transported to the hospital then her decisions that they made together will be overlooked. This is so wrong, but so true. Having a living will doesn't mean crap unless you are there to see that it is followed. You don't actually think that Doctor will take time to check that patient's chart do you? Well, don't go there. I can tell you that they don't and won't. I hope this helps some of you who thing that just by having that piece of paper will enable the safety net you have prepared be followed. Because it doesn't.

Sincerely,

Dean

From JDD1953

Just wanted to stop in and say "THANKS!" for The Ribbon! Each and every time I read it I find parts to very helpful in caring for my mom who moved in with my family two weeks ago. All seems to be doing ok at this point, I just pray that it continues. Again thank you for the time you put into the Ribbon as it is so helpful.
Margaret!

From DKThomp

July 20, 2001 PM.

It was so hot and steamy tonight I took my walk early, and I watched the sun setting. It was a beautiful red ball of flame against the clouds in the far west. Somehow it reminded me of my beloved Ann, and my mind started to think in rhyme. As usual, I came home and wrote out my thoughts. My, how I miss her!

Summer Dream

A steamy eve in mid summer,
Sleepy dreams half in slumber.
Sun now setting red ball of fire.
Thunder is distant a storm to sire.

A lazy day with memories aflame.
Gray green eyes smiling my name.
She's been gone so long, so long.
My heart still singing our love song.

Walking together we talk of naught.
Hand in hand, what a beautiful thought.
Rare our love over years grew strong.
Heart to heart intertwined so long.

Old summer evening hears not my woe,
Like night follows day, life goes on.
I know this truth, but I miss her so!
I'll join her again when my day does dawn.

In His Great Love,

Doug

As always we wish you...

Hugs and Peace,
Karen and Jamie