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!!
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!
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.
using common sense and some of the above tips, it can be an
enjoyable family vacation for both you and the Alzheimer's
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
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.
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.
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
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.
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.
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
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!
In His Great Love,
As always we wish you...
Hugs and Peace,