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Alzheimer's blog
With Mayo Clinic health education outreach coordinator Angela Lunde
Rising to our highest nature, the work of caregiving
This week, I spent many hours with caregivers, mostly listening. I'm now feeling a bit tired and melancholy, yet humbled and grateful for these conversations. Although I have been doing this "work" now for many years, these are the interactions that emulate for me the most basic and necessary of human experiences — being completely present for someone when they need it most. When I can be completely present for someone else, I feel both blessed and whole.
In my desk drawer, I keep a notebook of meaningful or inspirational thoughts I want to remember. This week, I was struck again by these two paragraphs written by Beth Witrogen McLeod from her book, "Caregiving: The Spiritual Journey of Love, Loss and Renewal":
"Doomsayers would preach that rage, greed and resignations have overtaken the world. I believe that if you look into the private rooms of caregiving families, you will find the true nature of things as they are, beneath the veneer of social conditioning and confusion, stereotype and illusion. There you will find great kindness and devotion, a trust of life that surpasses doubt or pain. There you will find the highest expression of who we are.
"If we close our hearts to suffering, we cannot open them to love. Every benevolent act counts. By surviving difficulties and holding on to goodness, caregivers inspire others to summon the power of the spirit. Humanity can evolve from its violence and recklessness into an enlightened age of caring when the lessons of loss are honored, exemplified by modern-day heroes who fulfill the age-old mandate: to give."
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My 73 y/o husband currently has mild dementia past having Herpes Encephalitis, Stroke, Seizures and Kluver Bussie Syndrone about 5 years ago. Later he was
tested by his primary phy. and diagnosed with Alzheimers. He could not tolerate the Alzheimer medication but is curently on Klonopin and Elavil at hs. My health is not good. I am aware of a slow regression in my husbands behavior. There are things he does not know and he does not know that he does not know them. He drives and I feel afraid until he gets back home. I know he gets lost but always
drives around until he recognices his way back home. He has never volunteered to tell me this unless I question him. There is absolutely no way to stop him from driving and I can not go with him every time he leaves the house. I can no longer keep up with cleaning up after him, his room, bathroom, inside the house, outside the house. I have no help with these things. I feel I need someone who understands, to talk to. How may I make contact with those who will listen and maybe offer suggestions. Thank you.
I'd like to share a new resource with you and your readers, for anyone caring for a loved one with Alzheimer's disease in their home.
The Copper Ridge Institute, affiliated with The Johns Hopkins University, is a leading provider of dementia research, care and education. The Institute has developed the first training resource of its kind for caregivers, providing a step-by-step method for caring for loved ones with Alzheimer’s disease. Available as a DVD and webcast, the FREE program (www.alzcast.org) recreates many of the daily situations that caregivers may encounter and provides coaching for each of these activities based on best practices developed by The Copper Ridge Institute.
We’d like to ensure that as many people as possible can take advantage of this free program so are reaching out to sites like yours to help us make people aware of the program. Could you please let your readers know about this important resource? www.alzcast.org
Many thanks,
Katelyn Montgomery
on behalf of The Copper Ridge Institute
My husband has moderate to late Alzheimer's Disease. Thankfully, he is still a happy man, witty at times, and a pleasure to be with. Caregiving has brought out the best in me. (Prozac helped, too.) Our Mayo Clinic physicians consider the caregiver's wellbeing as important as the patient's. If you cannot handle the considerable stress, you could end up in a nursing home, too. I have been urged to schedule substitute caregivers to stay with my husband while I go for a walk, get a massage, run errands, etc. He enjoys the caregivers so it is not gutwrenching for me when I have to leave him for a few hours in their care. My point is that, no matter what stage your spouse is in, you need to take care of yourself, too.
Taking care of patients of Dementia, of any cause, at home, can be a very harrowing experience, however much one loves them, cares about them and however much one is grateful to them for all that they may have done for them in earlier times. The heartaches which come from hunting for them in street corners or worse still, if they have wandered far away from home can be very stressful. The tension of not knowing if they have taken their doses of Insulin injections, their bronchodilators, etc , can be very exasperating. Their mood swings which keep getting worse, partly due to the knowledge that they are getting more and more helpless and dependent, can be extremely freustrating for the care giver, on a day to day basis. Most importantly, it is invariably the female member of the house who ends up being the care giver, whose career may be sacrificed, she herself being a middle aged woman with her own health issues and perhaps being in the perimenopausal age group has her own problems which take the back seat in all her efforts to give the best care she is capable of. Above all, the end result is always tragic, with the patient invariably dying. Invariably, there are no words of kindness, no words of comfort or encouragement from family members, who always point out all that was not done. With longevity going up,it is imperative for governments to think of providing care for these unfortunate patients so as to reduce the burden on the next of kin.
Taking care of a loved one can be hard and it can sometimes seem like such a burden. I feel guilty sometimes for the thoughts I have about placing my grandmother in a home. I much rather her be home around her family. I have noticed her forgetting a lot but I am not sure if it’s just old age or if she is showing signs of Alzheimer’s.I am lucky that for the most part she can still operate on her own. She is still so independent. What I did start to notice is that her medication would last a bit too long and figured out that she was skipping medication times because she would forget. With her designated medication times being crucial I found myself at work always watching the time to make sure I called home to remind her to take her pills. Needless to say I would sometimes get caught up in meetings and the rush of the day. The extra responsibility became so overwhelming. After a bit of research I found a service called Callmelater.com that offers a service called Care Calls which allowed me to, at one time, record my messages and schedule the delivery times so that my grandmother would automatically receive a call, in my own voice, reminding her to take her meds. I even get to schedule her doctor appointments in there as well. I would suggest this service to anyone in my similar situation. Callmelater.com is surprisingly very inexpensive and helpful. It took a huge weight off of my shoulders and helped reassure me that my grandmother took her meds.
I don't know exactly what to say except I am beginning to realize that my 69 year old husband is showing signs of dementia. I fear it to be Alzheimers, and am waiting to get into see the Doc to confirm this. My one Doc friend said she didn't think it was because it has progressed so rapidly..like within 2 months. But, from what I read, he does seem to have so many symptoms.
Caregiving is a very tiresom and difficult experience. It saps your energies but you know you have someone to take care of so you keep on going. There is no rest for the weaRY
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My name is Helene Moore and I live in Nevada.I self published a book called Behind The Mask, which is every new caregivers story. It made me realize I had to give something back.
I've started a one woman campaign to wipe away the caregivers tears.
I want everyone to Adopt A Caregiver, that is my mission in life now.
If I can plant a seed in everyone's mind, when they are ready, they too can Adopt A Caregiver.
Information about me and my book and blog are on
www.helenemoore.com
I just want to help as many caregivers as I can.
This is my first post, and I hope it is okay to put my website on this post.
Thank you for listening and reading.
Keep love and kisses in your life. Helene
Continues...
After eating I usually moved to the back of the room to watch nurse’s behavior. I wrote everything down thinking that one of these days I will publish about the treatment of helpless, horrible sick people. One patient couldn’t sit: she sat in an awkward position leaning backward. So the nurse put the heavy cover of the food container between the chair and patient certainly hurting her back. Every single day!
Some patient had their relatives to come and feed them, and that took about 25 minutes. When nurses fed them, it never took longer than 10 minutes.
When relatives came to see their loved ones THEN the nurses were so friendly, talked nicely to patients and stroked their heads. Visitors even brought flowers to the nurses thanking them for a good care! What did they know?
In other nursing home in Illinois the treatment was only slightly better, but in Madison, WI nursing home it was quite good.
I’m happy that Joanne has positive experiences of the nursing home. After an operation I had to go to the nursing home in Illinois to learn to walk again.
Even that the nursing home looked like a hotel; garden with flowers and small pond were beautiful and very well taken care of, the treatment of particularly Alzheimer sufferers was not nice at all. I had my room for a while in the same floor as Alzheimer patients. 90 % of nurses were from Philippine and they together spoke their own language.
Because the patients were not able to talk or express themselves at all, the nurses did what they wanted. One young and strong man (patient) stole food from other patients, and nurses didn’t do anything. Three of the nurses even stole the best parts of patient’s food. One of the patients didn’t eat, - well, hardly anybody wanted to eat – so the nurse ate the best pieces. Usually Sundays there were one slice of bacon on the top of pancakes, and that was the 3 nurse’s first steal. Nobody – of course – complained.
One the patient didn’t want to eat at all, so the nurse helped herself. Then she noticed that I looked at her. I said that oh, it’s great that at least some people have a good appetite.
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