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As I'm writing, the Meeting of the Minds Conference is just around the corner. I know not all of you can attend, so I'll be bringing you many highlights, a few session overviews and other information I think you'll find valuable in the weeks that follow.
In addition, I see it as both a responsibility and an honor to be the voice for many of you. As I read your postings from week to week, I hear your concerns and challenges. I witness the isolation that surrounds persons living with the disease and many caregivers.
As a society we have a long way to go to embrace and support families impacted by Alzheimer's and related dementias. Work lies ahead in shifting communities toward first seeing a person with considerable strengths before disease and disability. We need to increase research and resources for identifying ways of improving well-being and implementing real strategies and policies that support family and friends in a caregiving role.
Berrie's recent post touched my heart deeply, and I'm sure others who read it felt something too. The efforts she's pioneering in Namibia are magnanimous to say the least. And, truth-be-told, despite differences in culture, technology, and geography, we share a common mission — ensuring the dignity, human rights and needs of persons living with impairment.
The cure for disparity is not only about hope; it's identifying how to change something we care passionately about. Inspired by Berrie and so many of you who have shared your journey with me, my voice toward action is a humble tribute to you.
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As a child of the person with the Alzheimers disease, how do you tell your parent they can't go home and live alone anylonger, when they are constantly day after day begging you to bring them home? :( I don't know how to handle this?? Please help.
My husband has had Alzheimers for about 5 years. It is very difficult to be a caregiver & I admire all who do so! I never thought my husband would not remember how to use a tool (he built our previous home) or would be unable to remember even one of our 12 grandchildren's names. He was in accounting & no has no idea what money we have - he likes to have $20 in his pocket but I have removed all credit and Medicare cards. I drive, I fill the gas tank,he can't remember,he often thinks I am going the wrong way. He awaits the mail man so I may find it in the kitchen, bathroom, on my bed. I understand how caregivers feel alone, because you are. The person you knew is there but not really. Caregivers are a fortune & a nursing home out of the question dollar wise. I cared for my mother, father and daughter prior to their death but cancer and MSA are so not the same. They knew me till the end. A book I recommend is "The Myth of Alzheimer's" by Peter Whitehouse. The "36 Hour Day" depressed me but is now my "bible" Laugh when you can, watch funny movies, talk to anyone "walking the walk".
Congratulations! Spirit of the 2013 Meeting of the Minds will result with new research, support, education, advocacy for funding, and awareness!
It's up to us together, you lead us, and will keep on leading us to the cure for the future as well as help us now with new skills, ways of communications. Felt so good to look forward to HABIT, and the new CaringSource. Left with new HOPE, SUPPORT, AND EXPERTISE for my personal life with my dear husband. GRATITUDE TO ALL OF YOU!
to Olivia, the tests are only a statement for this moment. It is not the only thing, because we are, your father is in a other situation. He ist nervous, when he like I and you are proofed. He is in exiting, angry and so on. The day is not doing on, like the other. And than he is proofed. He is proofed with other things as in his own life. This are new things.
And so he became a diagnosis. When he goes once more, it will be more bad. So he must have time and his own safety in mentally. And in the daily life from the social systems more good words. I was a caregiver for a long time. I wrote a book Rediscover Recovery.
'Armour' gets an Oscar! Thanks to Hollywood!
What a beginning for Meeting of the Minds week. Doubt if anyone who sees it, will not experience our lives in some way. How could one forget it?
Thanks to all our researchers, staff, patients, caregivers, and the team of donors leading us to better quality of lives.
Carol,I just read your letter. I have known my husband has dementia for 3 years ,and I thought there were a problem a few years before that but he would not go be checked out until, by me complaining and asking him to go, he said he would go to prove me wrong and the results came back what I had known, he has dementia. He is getting worse all the time, yet still say it is nothing wrong with him. He gets angry with me or anyone that try to help him or me. His condition as gotten to where I am having to clean and help him with everything. He is going to have more test done soon and I feel these test will show he should be in a caregiving home. Everytime a nursing facility come up, he will say he will never go to one, he would rather be dead. I worry and is so fearful what will happen if he is forced to go into one yet, I don't see how I can continue to do all this work and decisions by my self.
It seems I forget facts, things, dates easily? Is this a sign that I'm getting
She ended her pain, not him..typo
My father should have had testing years ago, Mom said he would never allow it. After a lenghtly illness he ended her pain. This situation forced us into the assisted living option. 2800.-/mo and 9 months later he is angry and bitter she "caused him to be there." He wasn't the caregiver type and offered her no help. My sister & I have never felt so helpless. He refuses to live with us, we have begged but he wont hear of it. I have never felt so lost and alone in my entire life. I've lost my life long friend and he won't let us help him, he just wants to go home. I welcome any advise.
Terry; Your wifes phase or decline can never be turned around, perhaps level off for short periods off time, but continue on a downhill slide. Sounds negative, but after eight years one must adjust quickly and be thankful for the good times, present and past. My wife too has FTD and from the start lost the ability to read, write, and worst of all speaking. Ive lost my best friend and the love of my life. Make the most of what you have, cherish the past and even though she doesnt know who you are, you darn well know who she is!!!
God Bless You Berrie for your love and courage. My husband has late stage dementia and is well loved and cared for at home. I can't think of less for him or others with dementia. I pray that God will shower every blessing on you and your work.
It would be good if the cost...reduction plans therefor.. of memory care facilities be discussed at whatever Alzheimer conferences you attend. Costs at VA facilities as well as at private facilities is astronomical and climbing. For anyone without a long-term health care policy it is an impossibility. Memory Center facilities require more patient maintenance, I know; however, $7000 a month cannot be accommodated by most people. VA memory care costs is $7000 per month in one state. What retired veteran's family can afford that?
Very true.We all need to focus on a person's strengths,instead of his/her defects.This applies not only to alzheimer victims,but to all.
Grateful are we all for our leader!
It seems unreal to me at times, but the general public seems so unkind to caregivers and individuals with dementia. It's almost like it's something they can catch from us, so they do not want to be around us.
I would think they would be so grateful they did not have the disease they would be friendly to us and see compassion in their eyes instead of don't come near me! Don't they realize it so painful for them to eliminate us the way they do?
This is for June who was wondering where her husband hid her wallet and other things. My Dad has a few places that you would never think of: inside his shoes, inside the Kleenex boxes (under the Kleenexes), and inside the pillowcase on the bed.
I've learned to always check the garbage cans!
Good luck and the best answer is to hide everything of importance.
My Mother in law passed away 2 years ago Valentines as a result of Alzheimers. She died in a nursing home. Theher death was caused by dehydration she forgot how to swallow. Myy husband would spend about and hour and a half getting her to swallow a few sips of water and maybe a bite or 2 of puerred food. Finally she just couldnt remember to swallow and it would jut come out of her mouth, and he got afraid of her strangling, or getting it down into her lungs. We were very thankful that she a living will and the decision about a feeding tube was not ours. THe staff at the nursing home was not trained adquately in caring for her, or recognizing the changes in her and how to address them. When she got to the point of not sitting up right in her chair, they would just ignore her, we demanded a solution, and got one. A wheelchair that could be positioned to lean her slightly back. An fighting with the staff to get them to realize that she wasnt going to feed herself, and for them to take the time at the meals that we werent there to feed her. Keeping harmfult things where she couldnt get them was also a big problem. I finally reported this to our state office that regulates nursing homes. The Alzheimers Association was a big help, I could call, or email them and they would respond with their best advice and them follow up with me.
I attended a six- week "memory enhancement workshop" intended for people with early- memory problems and their carers and/or partners. It helped me re-inforce my memory (I do not have a memory problem - at this point in time),but my husband does not remember anything talked about as soon as we got out of the workshop door. Other carer-participant mentioned to me the same thing. When I was sent a questionnaire after the workshop, I suggested that the workshop would be work for people with good memories, not for people who cannot remember anymore.
This experience showed to me that there really is nothing that the medical industry can do for people with Alzheimer Disease. They can prescribe medication (which may not help),counsel,or provide a workshop, but no one really knows what goes on in the minds of a person suffering with Alzheimer's disease.
The family carer, who lives and cares everyday for the family member with Alzheimer's disease,is the one faced with the different presentations of the stages of the disease, and the carer has to learn how to cope and manage these changes in the caring of the family member. At the same time,the carer has to make sure that he/she is in good health all the time to be able to handle all the emotional,mental and physical stresses of caring for the family member with Alzheimer's disease.
This is the reality of Alzheimer's disease.
I don't know if I can offer much encouragement to my fellow caregivers but to keep going trying to make the best of every minute of every day. We all lose our tempers especially when we're tired and there seems no end in sight. I know I've never felt so alone in my life. My recent struggle is my husband taking our rent money, my wallet and putting them where I can't find them. I only wish I could understand how his mind works. There is one thing I do know and that is I look forward to this blog and reading how others cope with the same things I struggle with. Its the one thing that reminds me that I'm not alone.
My daughter signed me up for this e-letter and I have ignored it until now. My wife has fronto temporal dementia and it has some similarities to alzheimer's as I understand the disease. All the dementia's certainly have common characteristics. I found Beatrice's comments interesting about her husband not being placed because he wouldn't like it and it's too costly. That's exactly where I'm at with my wife. I have told many that she will stay at home with hospice care if needed until death. I truly hope I can make the needed adjustments and inputs for that to be true. Funny how with all these bizarre and challenging things that happen that we continue to see the silver lining. And yes, I weary of the comments related to how can you stand it, etc. I never feel like a hero or some type of role model. I slog through day by day and quite frankly am not perfect. I'm not above telling my wife to "knock it off" after she finds herself behind me and lets out that first scream during a quiet span of 15 minutes. I have lost my temper but under nearly all circumstances keep it in check. But there is silly fun as well and sometimes a lot of it. She has truly brought my inner child to the forfront. Now, she's not eating so naturally, I feel worried and guilty. You can see that as a way out but regardless, the loss will be dramatic if indeed this phase cannot be turned.
First, thank you for all of your letters. Our church is starting a support group for dimentia patients and caregivers. Even tho, I cannot attend the meetings, I am giving the person in charge all of your letters. I am amazed that on four occasions I had just gone thru what your letters were about. Example "acceptance" etc. I try to give my husband all the respect and dignity every human deserves. He has dimentia/alzheimers, heart disease, diabetes, throws up a lot, incontinence, bowel problems, hearing loss, loss of strength in his legs, and has no feeling in his hands. He has sundown syndrome and ADHL and has panic and anxiety attacks. but thru this all he has maintained his sense of humor and thank the Lord he is not aggressive, even tho' his sex drive has increased. I will not let him go into a home unless absolutely necessary because it would make him very unhappy and also who can afford it? We certainly cannot.I do appreciate our letters of information.. Bea
Thanks Connie for disseminating this wonderful blog. People can sign up for the newsletter version at https://newslettersignup.mayoclinic.com/?fn=203
Thanks also for reminding us of all the great programs that local Area Agency (AAA)on Aging offices provide for persons with cognitive impairment and their caregivers... Penny as you look for resources be mindful of the AAA and know also that the Alzheimers Association materials are generally 'cause neutral'. In other words they apply to most causes of cognitive decline. -Glenn Smith, Clinical Editor, Alzheimer's Resource, MayoClinic.com
PENNY - I have been a caretaker of my mother diagnosed with vascular dementia 12 years ago - she has progressed and is now in the moderate to severe stages of the disease. The two best books that I have found helped me are CREATING MOMENTS OF JOY by Jolene Brackey and Validation Techniques for dementia care by Vicki deKlerk-Rubin. Unfortunately, YOU must take an "involved approach" to the disease, as the medical community/assisted living facilities (at least in my area) are sadly lacking in knowledge and/or training to work with our loved ones. My suggestion - stay informed. This website is a great tool.
Angela your blog and the Alzhiemer's Caregiving Newsletter has so much great information in it that I am wondering how we can get this neswletter out to many more professionals who work with seniors such as our Senior Advocates, Respite Care programs and Volunteers programs in S.E. Mn who would benifit from this information as they serve seniors. So many of these providers come face to face with many of the day to day caregiving issues of folks with Alzhiemer's Disease that may not be connected to Mayo. If we gave you an expanded email list could they be added to your listing?
What a truly informative article about the many challenges facing those who care for a loved one with Alzheimer’s Disease. The Alzheimer’s Association is a strong organization committed to supporting caregivers. For those looking for extra resources and help, the Alzheimer’s Association offers free, online caring communities to organize family and friends during times of need powered by Lotsa Helping Hands. Visit http://alzheimers.lotsahelpinghands.com/ to learn more.
My siblings and I have read and used "The 36-Hour Day" to recognize, obtain confirmed diagnosis, and deal with my mom's vascular dementia. I now need the next-step kind of book.
I am recently retired and have become the primary caregiver for my mom who now lives in an assisted living facility. I see my roll as a facilitator, working behind the scenes so she can maintain her dignity and her sense of independence. Example: I worked with the assisted living facilty's health care center to find her a dentist, scheduled the appointment, got the health insurance forms to them, but let the health care center inform her of the appointment. I told her that she had told me when the appointment was and gently reminded her about it, let her go on her own knowing that the dentist understood to not ask her about insurance, etc. Let her go on her own while following her to make sure she didn't get lost on the way (I can't bear the thought of her being lost because she gets so scared when that happens.)
Now I would like to have access to a resource that helps me understand what might the "real" motivation behind actions and words. Anyone know of a good book - everything I can find is about Alzheimer's and that is not what my mom has. I want to relieve her of as much anxiety about her situation as I can by having the best reactions I can.
Help - know any good books I can read? Vascular dementia actions might mean __???____. thanks - Penny
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