Happy Halloween to all! I've been sitting here reading email and getting ready to get this issue out and thought I might have some Trick or Treaters. Not so. Our City Council did not make a decision about whether the kids should be out tonight or tomorrow night. If I remember correctly from when I was a child, we did not trick or treat on Sunday night. I'm thinking we always went on the Saturday night before. A lot of the cities made a decision for the kids to be out tonight and that's the way I think it should be. Of course, that's just my humble opinion. :-)
Nick has had another bad spell. I just wish the doctors could come up with an answer to what is going on with him. He started off as just feeling "not right" and not being able to stay awake. He also had developed a twitch in his arms over the last few days. It then progressed to his blood pressure going pretty high, a sensation of falling, though he did not fall. His pulse was 112 even though he had been sitting for at least 45 minutes. When the pulse got to 129 sitting and the bp was fluctuating all over the place I got him to agree to go to the hospital.
While in the ER he started having visual hallucinations and was delirious. He was calm thank goodness. The nurse did a true orthostatic bp and when he stood his bp was 66/48. She had him lay down immediately and she started an IV. She said that showed he was dehydrated. They admitted him.
When the doctor came in the next morning he said that Nick's BUN and Creatine levels were high and he was going into renal failure. Nick was still delirious and even told the doctor that his mom used to fix his meds out but now "she" (motioning at me) does it. Now that's odd because Nick's mom has been deceased since he was around 15. Doctor said he would have a psychiatrist come in the next morning and he was ordering a CT scan.
The CT scan was done and it showed an old infarct but nothing else. That day the doctor saw that Nick was back to his senses and said his levels were back to normal so he could go home. No psychiatrist and no explanation for the fatigue and weakness which still continues to plague Nick.
I went through some stuff with my other relatives but there was nothing going on like this. I'm at such a loss. I did not go to work this week because I did not feel comfortable leaving Nick alone at the hospital or at home.Thank goodness for a Great boss and for PTO time!
My son, James, sat me down and had a talk with me. Heasked me "what are we going to do when Dad can't be left alone at all?" I told him I had been fretting about it the whole time I was at the hospital. He then said that since I make more money and get more hours than he does then he would volunteer to quit work and stay home to care for dad when the time came. When I could finally speak from being all choked up, I told him that I would consider it and we would talk aboutit more as time goes on. Even though he was my right hand with all the others, he didn't have to do any of the real hands on stuff. I think I will start training him now so that when the time comes he can be ready just in case he becomes primary caregiver.
Well, such is my life. If it ain't one thing it's another. Good thing I can roll with the flow. :-)
Words From Karen
First of all, I must offer my apologies to our Ribbon readers. I know you all look forward to receiving The Ribbon and I thank you for all the inquiries and comments. It is nice to know that we were missed.
In the last issue, Jamie mentioned that my Mom has been placed in the hands of Hospice.
This happened in early June. Mom has had a number of hospital visits this year and with every one, she declines more. Although she is in late Stage 6, she is still verbal and ambulatory, or at least she was. An extended stay in the hospital in May left her unable to walk. So when I saw her in June, she was in a wheelchair. After conversations with the doctors and care facility staff, we opted to turn to Hospice. There will be no more midnight runs to the hospital, no more weeks of being bed ridden.
Years ago, when she was still cognizant, she did a Living Will. She does not want any life saving efforts, no tubes, no heroics. We decided that we were, in fact, going against her wishes by putting her through all of this.
We don't want her final moments to be filled with fear in an Emergency Room, she doesn't want that either. Hospice sends a nurse to see her 6 days a week. They have also relieved some of the financial burden and are giving her what she needs in the way of medications.
So she is getting even more care and is doing fine.
It was a difficult decision but we feel it is the right one. At 82, after almost 11 years since diagnoses, we feel she deserves peace in her final days. She no longer knows us, nor remembers the life she had before AD but she is content in her tiny world.
We all have a sense of peace knowing that when the end does come, she will be in her own bed with caring people around her. She deserves that.
Introduction to a New Writer
My name is Barbara, I am dealing with Alz / Dementia and write almost on a daily basis. I have been receiving the Ribbon and enjoying it very much. I belong to an Alz site which you may be familiar with since they have mentioned the Ribbon more than once to mE.
Here's the writing Barbara sent:
"People spend a lifetime searching for happiness; looking for peace. They chase idle dreams, addictions, religions, even other people, hoping to fill the emptiness that plagues them. The irony is the only place they ever needed to search was within."
When you open all your senses, sharpen your awareness skills, and take yourself out the door, down the street, into an area of your town that is not perfectly manicured...............then do yourself a favor and stop somewhere along the roadside.
With permission from firstname.lastname@example.org (email@example.com).
I am enclosing a poem I wrote relating to my husband of 53 yrs. who has Alzhemier's Dementia. My name is Joyce Yates and I have been my husband's caregiver for almost 5 yrs. since his diagnosis.
Guidance and support helps children cope with grief(Link: http://seattletimes.nwsource.com/html/health/20020 60781_healthgrief13.html )
Lorna Manago first faced grief at age 8. "Daddy has a disease in his brain," said Mom. "I'll pray all day every day so he'll get better," said Lorna. "Unless a miracle happens...
Full story from the Seattle Times(Link: http://seattletimes.nwsource.com/html/health/20020 60781_healthgrief13.html ).
I thought this might be good information that you could include in your newsletter. As part of raising awareness of Alzheimer's disease and with November being National Alzheimer's Disease Awareness Month, MedicineNet.com recently surveyed 387 individuals visiting MedicineNet.com who have or care for someone with Alzheimer's disease. The survey results are now available for download.
Coping with Alzheimer's disease in the Internet Age: Survey Results(Link: http://www.medicinenet.com/alzheimers_disease_heal th_report/article.htm )
We encourage you to download and use the information gathered in the report. All we ask is that you provide attribution to MedicineNet.com(Link: http://www.medicinenet.com/ ).
If you have any questions, or if MedicineNet.com can be of assistance, please let me know.
Nothing is more lovable than a baby. This lifelike, oh-so-huggable doll, looks and feels like a real baby with an expression that few can resist.
One family wrote, "My mother has had a baby doll for two years now. She loves that doll with a passion you would not believe. She kisses it, tells it how much she loves it, and keeps it with her all the time. At first she told me she knew it wasn't real, but with it, she never feels alone. This was the best thing we ever did for her."
"Someone To Care For" Doll(Link: http://alzstore.com/moreinfo.cfm?Product_ID=130&am p;CFID=1703767&CFTOKEN=60443515 )
Take a journey into the author's world and learn first hand what it is like to battle with this wicked adversary known as Alzheimer's disease, on a day to day minute to minute basis.
This book will defiantly bring to light what those who suffer from and those who take care of people affected with this hellish disease. Learn more about what people go through as their mind is slowly and irreversibly wiped away and take heart in their struggle to maintain themselves.
Learn about what a spouse, child, family member or caregiver see, hear and live with as they watch helplessly with open arms to their loved ones fight for independence.
This is the story of what happened to one young woman who was diagnosed at 38 years of age with Early On-set Alzheimer's. Her and her family's life that was once known to be normal has been thrown into a tailspin that would forever change their lives.
It is online through Barnes & Noble and Borders Bookstores
It has been given many rave reviews through the local Alzhiemer's Chapters.
It can also be ordered through the publisher's website(Link: http://www.emeraldfalconpress.com ).
Click on PRODUCTS and scroll down to YOUNG HOPE by Tracy Mobley
From firstname.lastname@example.org (Julie)
Just a short note of thanks for your newsletter. I read this, usually late at night, by myself (3 kids, husband sound asleep) and the tears just seem to flow. My mother, Lilian has been diagnosed for some years now (she's 71) and just last february was moved into a care facility.
This, as you know, was heartbreaking for all, my father was her primary caregiver for several years. He lives in Perth, West Aust and I live in Melbourne, victoria and we visit a couple of times a year. The last time I visited there was no recognition on her part. I try to ring every other day, it does not matter that she doesn't recognise who I am but just that she knows that I am someone who loves her! Best go before the tears flow AGAIN!!
From email@example.com (Sonja)
I was looking for websites to help my mother inform my father's WWII squadron that my father just died of Alzheimer's.
I have spent the past three hours reading the letters, stories and poetry on your website and I Thank you! I have held up tremendously in order to help my mother through all the immediate tasks that have to be done after a spouse dies. My husband was a State Patrolman killed in the line of duty 17 years ago, next week, and I just remember -- all I want to do is scream, not answer all these insurance, estate and financial questions. Mom has had a rough time dealing with all of this, but is blooming like a new flower! I wish she had a computer, so she could visit and benefit from your website. Thank all who have contributed! You have no idea what a step in healing this makes!
From firstname.lastname@example.org (Chuck)
The resumption of The Ribbon was like a breath of fresh air. Glad you all had a well deserved break, but it's great to have you back. To paraphrase an old song: "You've Gotten To Be A Habit With Me."
From Dzyizy@aol.com (Dzyizy)
I care for my husband of 51 years. We have been married 28 years. We had always done everything together. Since 1998, he became ill and our lives changed dramatically. I initially went through shock, grief, anger and fright that I had never experienced before. Even when my mother passed away in 1985, I was deeply grieved but my ever patient husband was there with me every day. Since he became ill, he has never been the same. I have had to accept that he would never be and I still struggle with this acceptance today. I came across your newsletter and really appreciated the Caregiver's Bill of Rights. I, along with my two adult children (a third is away at school) are his only caregivers. We try to keep things as normal as possible, but no matter what there is always a level of stress that comes from trying to do our best to care for him. I printed the Caregiver's Bill of Rights(Link: http://www.theribbon.com/articles/billofrights.php ) and placed it on our refrigerator as a reminder that it is o.k. to want to continue to invest in ourselves. I will continue to check in. Maybe I can find more helpful hints............
From email@example.com (Beverly)
The Ribbon has been a great help andvery informing of many interests I have at this time in life. My husband has Vascular Dementia/Alzheimer's. I share your information with the 2 support groups that I go to. Thank you!!!
As you can see by the emails above, what you contribute, no matter how small you might think it is, is a BIG help to someone else. That is why we say The Ribbon is YOUR newsletter. Without your help we wouldn't be able to put this together. It is our hope that you will continue to send in links, articles, poetry, anything you think could help someone else as a caregiver.
Hugs and Peace,