It's conventional wisdom that Alzheimer's disease is a tough diagnosis and that life becomes increasingly challenging as this irreversible and incurable disease progresses. But let's back up a minute: Exactly whose life are we talking about?
Caregivers' lives are the ones that become the most challenged, as time goes on. You hear this truism repeatedly from those who've made it their life's work to care for Alzheimer's patients and their families. Do you, as a caregiver, really believe it? I hope so.
The same observation was made in blunt terms this week by a "heavyweight" (in experience, not in physical stature, by the looks of her attractive photo) in the field, gerontologist Emma Shulman: "Caregivers suffer more than patients." In fact, she calls this realization a big "ah-ha moment" in her career. And it's a long career: An inspiring [New York Times mini-profile] (http://www.nytimes.com/2009/07/07/nyregion/07experience.html) of Shulman explains how she's a consultant to NYU's Center for Excellence on Brain Aging and Dementia. She's done pioneering research on how to care for Alzheimer's patients, co-wrote a training manual, and lectures all over on memory retention.
My favorite part: She's 96.
When someone with her life experience and professional experience tells you, "You have to take care of yourself as well as the patient," you'd darn well better believe her.
Here's where I could insert the usual "sleep better, exercise, go out with friends" advice, but you'd tune me out. Instead, consider this great advice from Duke's Lisa Gwyther (education director of the Bryan Alzheimer's Disease Research Center and a Caring.com expert) and P. Murali Doraiswamy, a psychiatrist and Senior Fellow at Duke's Center for the Study of Aging. In their excellent guide *[The Alzheimer's Action Plan] (http://www.amazon.com/Alzheimers-Action-Plan-Murali-Doraiswamy/dp/0312538715/ref=ed_oe_p) * (just out in paperback), the duo point out that sometimes families can be their own worst enemies when it comes to getting help:
- Roadblock to getting help #1: "He doesn't want to go to adult day care."
Most people don't, until it becomes familiar and predictable. Try explaining "It's just for a few weeks."
- Roadblock to getting help #2: "They won't appreciate him or her."
Neither will you if you don't take a break.
- Roadblock to getting help #3: "I don't really trust nursing homes or care agencies."
A little mistrust is good, but only if it means you find the best aide or home, not if it means you do without. Do a lot of research before you choose, then monitor after.
- Roadblock to getting help #4: No one cares for her the way I do."
That's true, but so what? New people can expose your relative to new interests.
- Roadblock to getting help #5: "We can't afford help."
This is the rainy day for which you or your relative has saved.
- Roadblock to getting help #6: "We're saving our pennies for a rainy day."
If you're caring for someone with Alzheimer's, it's pouring.
Want/need still more forehead-smacking realizations? See the Gwyther-Doraiswamy book and the Shulman profile.
I am an LPN that works in a lockdown Alzheimers unit at least 40 hours a week and I love the people that I take care of! They can be a little trying at times, but I always do my best to see to it that they are well taken care of. I know firsthand that some are better off in a nursing home, if you choose the right one and visit them often. Elderly abuse can all too often come from stressed out family caregivers who are not experienced and do not understand how the disease progresses. Though you love them and have the best of intentions, keeping them at home may not always be the best choice for your loved one or for you.
I am 61 full time worker taking care of my 89 yr old mother-live with her. I have been doing this for 10 years. She is healthier than me now. I am stressed and about to lose my job. She has no worries. I take care of everything. I have no social life and talk to myself a lot. Ask me, the caregiver suffers more. My mother may have thinking problems but is not aware of problems at all. She has me who does her laundry, cooking, shopping, take her to the doctor, get her cleaned up...I do everything for her. Some days after work and then doing for her I'm so tired I can't sleep. There is no one to take care of me and we are running out of money. So now I worry more than her, she doesn't worry at all. Everyone says take care of yourself. Have you tried finding time to do that? I understand the concept and wish I could but how? Now I also worry if I lose my job we both will be in financial trouble. The patient with dementia has no such worries, my mom doesn't think any more.
A caregiver must take care of themselves or someone will be taking care of them. I find myself gradually saying good-bye to the spouse that I love dearly and try to remember each day all of the years that he worked so hard to take care of me and our big family. I'm not saying that it is not hard because it really is. But now I recognize the value of Day Care and the time I have to read, meditate, have a little recreation at times and just have some time for myself. Keeping in contact over the phone with old friends is helpful and also sharing the experiences of the day with other caregivers
I understand the point of the article, but I basically disagree - I constantly strive to remember it's not about ME, the caregiver - it is about my WIFE, who is lost. She may not remember it 5 minutes later, but she lives it 24 hours a day. In choosing whether to place her or not, I worry about what is best for HER more than what is best for ME. Maybe its because I have caregivers who provide a lot of help, but I hate the idea that I would place her because it was tough on me, if its not also better for her.
Yes, the dementia patient has their share of problems, but the Caregivers are worse off. The dementia patient may be agitated one minute, but 5 minutes later has forgotten if and what he/she has been agitated about. The Caregiver, on the other hand remembers everything and loses sleep and develops health problems trying to handle and solve all the problems and responsibilities involved with caregiving.
CAREGIVERS (Family Caregivers) - HANDS DOWN!
My problem isn't the cost of care - Medicare and our state program help cover the major expenses. My problem is this: How do you know/recognize when the time has come to put the patient into full-time care? I agree that I need to care for Mom as long as I can; no one else will care for her or about her as I do, including family members who can't be bothered to even call her occasionally. Homes are impersonal and cold no matter how well-run they are. I also know she is going to hate me for it. But I also recognize that I can't do this forever. It's a very stressful life for all of us.
Everyone's situation is different... In my case, my mom was diagnosed at age 64 and is 65 now. I have three young children. My mom is divorced and lives alone. The "roadblocks" mentioned in the article do any apply to me. I would be happy to get my mom to day care or have someone else give a hand...fact is she DOES NOT have a rainy day fund nor do we... This is her rainy day and we are still trying to find an umbrella!! My mom's quite content living in her middle stage world right now...she does not realize that her judgment is severly impaired and her memory is rapidly declining nor does she have empathy for the stress she has put on our family by choosing to spend her "rainy day" fund before she needed elder care. Meanwhile, I see the rapid decline far too well and have not yet found the means with which to get her into some kind of assisted living. From where I am right now...she is doing okay and I am on a steady decline both mentally and physically from the stress which this disease causes. She has medications helping her cope...I do not... I know my mom and I know myself and right now she is much better off than me...
I wonder how the person in the middle to later stages of Alzheimer's disease would respond. No doubt those of us who are caregivers feel/live the stress of caring for a family member with Alzheimer's disease. Protecting them, answering the same question a thousand times, cajoling them into bathing, and grieving for the relationship to go on as before, without change or interuption. Meanwhile is it better to live with the stress and grief OR to be the care receiver filled with fear, surrounded by strangers, unable to protect oneself or flee from danger, and perhaps isolated (mentally, socially and spiritually). All suffer . . . neither one more than the other . . . just differently.
The Caregiver suffers the most. They know what is really going on. You can explain the the victim of the disease but they won't remember. You as the caregiver have to "humor" them. Not lying, but dancing around the questions ex: Where is my money? or I want to go home. or when they cry and can't recall the words their brain is trying to say. Being appreciated by the victim is not relevant in this. The truth of the matter is no one will care for your loved one like you would..just as when your children were small, no one loves and raises your children as you do or good enough. At some point, you had to trust someone with your child, just as you have to trust someone with your loved one with Alzheimer's. AND remember things happen and it is usually no particular person's fault.