12/28/2009 5:00 am
Life
What to Do When Someone You Love Has Alzheimer's, By Judith Fox
Ten ways to cope with a devastating disease.
Editor’s Note: Photographer Judith Fox is the author of I Still Do: Loving and Living With Alzheimer’s (PowerHouse Books).
These are some of the things my husband used to do: fly a plane, perform surgery, consult worldwide, head a university and medical centers, hit four holes-in-one. These are some of the things my husband can’t do anymore: find his way to and from an unfamiliar bathroom, work the coffeemaker, play tournament golf and remember something I told him two minutes ago.
My life was upended in 1998 when Ed was diagnosed with Alzheimer’s. We had been married for three years. I was recently widowed, and he was divorced when I fell in love with this accomplished man who ate the right foods, exercised and completed his crossword puzzles in ink. There was no history of the disease in Ed’s family — but Alzheimer’s doesn’t play favorites and it doesn’t play fair.
More than five million Americans have Alzheimer’s. It’s a sad and scary statistic — but is ultimately just a number until you or someone you love is tormented by it. Then your life changes forever. Happily, though, there are lovely moments — laughs, hands held, bodies touched and the precious, fragile gift of time together. Here are some things I’ve learned over the last eleven and a half years, which I hope will help all of those who live every day with this devastating disease.
| Alzheimer's doesn't play favorites and it doesn't play fair. |
Don’t take the behavior personally. The individual who has AD is not putting silverware in the refrigerator to drive you crazy; they’re not asking you the same question ten times because they want to; they’re not suggesting you hide their wallet because they think you’re a thief. Please remember, for their sake and yours, that their brain is working hard to try to make sense of a world that’s slipping from them.
Be patient. Alzheimer’s sufferers are acutely aware of tone of voice and body language. When you’re impatient with them, it increases their anxiety and underscores the fact that they can’t function the way they used to.
Ask for help. Many family caregivers (myself included) think we can — and should — provide all the help that our spouse/parent needs. We tend to ask for help, if at all, long after we need it. By that point, we’re usually exhausted and out of patience. It becomes a lose/lose proposition.
Find a good support group. The only people who really understand what you’re experiencing are people who are experiencing it themselves. Support groups are available, but the dynamic and chemistry varies — find one that works for you. Even if you’re not someone who likes groups, let alone group support, try it.
Don’t allow yourself to be fenced in by Alzheimer’s. Alzheimer’s will ultimately narrow the world of the person who has the disease; please don’t let it narrow yours. Find something outside of AD that you care about and can turn to when you have the opportunity.
Find the right physician. Not all health-care professionals communicate well or are equally equipped to deal with Alzheimer’s. Make sure you find someone you can work with.
Enter the patient’s world. As Alzheimer’s progresses, the world of the patient and caregiver resemble — more and more — Alice’s Wonderland. Or a Marx Brothers’ movie. Don’t fight it; find the humor and try to talk with the patient in terms of his or her logic. If you try to impose your logic on someone with AD, you’ll frustrate both him and yourself.
Keep him/her engaged and always assume there is still someone there. Because there is. Talk to the person you love — even when they can’t talk back in an intelligible manner. Hold their hand — even when they can no longer reach for yours.
Get a pet. Pet therapy works, and neither a cat nor dog will care if someone with AD repeats a story ten times in a row.
Go with the flow. If you’re living with someone with Alzheimer’s, it’s a good mantra to keep in mind and to practice.
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Hi Stacy,
Thank you for your comment. Many people end up taking personally the behavior of an AD sufferer; it’s even easier to take it personally if the individual with the disease (your mom) has always been challenging.
You have some difficult things to deal with, and I hope you’ve found some people—in addition to your siblings—with whom you can talk. You mention a social worker who is involved with your mother’s care—can she be of help to you?
You seem to have a great sense of humor, Stacy, keep it alive and well! You might enjoy this quote of mine from "I Still Do": "Sometimes I feel as though I’ve left the theater of my own life and turned up on the set of a Marx Brothers movie. And thank goodness for the laughs." I wish you well. Judith. http://judithfox.wordpress.com/
Thanks, Judith, for the quote. My sense of humor (which can be extremely dark and twisted… what can I say, I’ve been in hospital practice for 20yr) is what gets me through the day. I have found that I have to use the PC filter with many people though. Since most of my friends and aquaintences are in some type of medically related field, I’m taken aback when I make some crack about mom being able to hunt her own Easter eggs. I ripped that one out one day and the person I was talking to was horrified! whoops. AD is not a disease that is funny in any way, not for the patient or for the family, friends or caregivers but unPC humor is what keeps most of us healthcare workers (as well as military members, fireman, policemen, etc) sane enough to do our jobs to the level of quality we expect from ourselves. We also get amusement from stupid, juvenile stuff, like tonight on one floor I have 1 patient named Green and another named Greener.
Fortunately, my pastor here in TX was able to find a church that has an outreach program to this particular AD center in MO. They have agreed to add mom to there visitation list. That makes me feel much better about noone living within an 8hr drive of where she is. I considered moving her to DFW and my other brother checked out resources in his part of MI and unfortunately, due to her payor status, she is in the best possible facility for her. It’s very clean, the staff is great, they have eye docs, dentists, hair dressers, etc all come to the facility. The best I could hope for in DFW for a patient with only M&M funding is a rundown, smelly nursing home I wouldn’t even wish on my ex-husband. Considering this, I want to encourage folks to make a serious effort to be fiscally responsible and make plans for their own care. My mom chose not to do this. Her intention was for us kids to take care of her. She had even turned down health insurance at her last job (ironically as an aide in a NH, we wondered if they had any type of work-study program). The days of your kids being truly able to care for you if you are unable to care for yourself long term are gone. Most households require 2 incomes, so there is no way a child can provide 24hr care for their parent, work, take care of their children and retain their sanity. I’ve seen people try and it has destroyed them and their nuclear family. I’ve always believed that the best way to repay what some parents perceive as their children "owing them" for their raising is to raise my children well. This has helped lessen the inevitable bouts of guilt that I go through for not caring for her myself.
Judith, you are wise; I’ve been shocked several times at the institutional care in Texas - and DFW region, too. This extends however to the state’s home health care because they do not require training, nor Bonding of those going into homes yet the government instituted "Money Follows the Person" under the Olmstead Act to keep people OUT of institutional care, in their own homes, or apartments. Nothing’s being done there to further safe over-sight of the disabled, seniors, or ill in this regard. We just heard from a family member in west Texas (way out there), who’s disabled mother had yet another person sent to her home as a "personal attendant." The new employee of a home health company had never worked in that capacity before, she just said she wanted to, had a very distubing personal background, complains to her mother upon entering each day that she doesn’t want to be there, cannot do the outlined duties consistently, to the point that she will empty a container and leave the empty thing sitting out incapable of taking a simple next step, or merely asking. However, she won’t shut up, and keeps talking then feels insulted because her mom’s exhausted with this 20-something person and threaten to quit, as if her mom had any choice. When our group talked to the mother, her one comment struck the interviewer: "They’ll blame me again - they always tell me it’s my fault, but if I say anything to them they steal from me, give out my phone number, and address - what can we do?" The state must act to protect those their sub-contractors are sending out to care for people.
Now, I simply do not ‘buy’ into your stance on children not owing our parents. Look around you, think about your holidays with your children, and remember, you would not be alive were it not for your parents. This is the social corruption that is malignant in the USA. It will have to be addressed sooner or later. It is part of everyone’s life plan to discuss this with family members, and spouses early. Families always took this responsibility on them, and proudly so. In fact, my grandmother worked at home, and took care of 2 with AZ at the same time - her in-home work was to make time for caring for family members. Having to have 2 jobs is a choice.
Stacy, no one expects or even hopes people will attempt to care for anyone with a serious psychiatric illness.
When children are abused, remembering it then, or not until later, for their own sake and peace (God knows peace has to be sought!!!), they deserve therapy, and to be able to stay in analysis, not until the memories are gone, not until they have forgiven the perpetrator(s), but until they no longer feel their insides shearing open when the memories surface, and until they no long regress when memories return - that puts them back at the age they were when the abuse occurred. This is what all abused people deserve - peace, wholeness, and someone competent they may reach out to for the changes that come during their analysis and long afterward.
There was some sense that you had an extreme situation with your Mom - and I hope with all of my heart that one day, no now or not soon, but one day, you will be able to view some times in your life with her as your mother when you enjoyed her, or something she did, or some place you went - without pain. And I truly hope that you will have reached that peaceful time when you are strong enough to know that she has no control over you, no more, and you are confident of that, and can see or talk to her without pain … really and truly, without pain.
It is so hard, Stacy, but when and if things get rough, run don’t walk to the best psychoanalyst you can find - after interviewing as many as you have to before "settling" on one. EMDR theapy may be needed first, though - (for PTSD) - its not uncommon at all and doesn’t wonders.
The only caveat about EMDR is to have a Level II therapist do it, who has had over 200 clients!
((((((((((((((((((((((((STACY!)))))))))))))))))))))
(incidentally - you deserve 24-hour care and understanding — too!)
Stacy, I wanted to check some things out before replying - sorry for the delay … however, this effort on your part is a win:win situation, what we all want with life’s challenges - you will benefit from this. Resources in Dallas begin with the Information & Referral Center, and the Women’s Center, there (formerly Women for Change - I was involved in it’s founding, in fact), and United Way. On-line look at http://www.aarp.org/health/ and contact AARP, too. Also, definitely contact the Senior Women in America foundation contact in Texas - one is in Dallas, and another in west Texas - the email is senior.women.org@gmail.com … this new NGO’s mission is to bring back the supportive milieu of women that the original feminist movement did so well in the 70s - because the same women now need a great deal of support, assistance, resources, referrals, and housing after decades of inequity, abuse, and hard work. They are looking for volunteer architects to carry out a plan for community/independent/living "cottages" — separate but connected (I designed the concept for them); there are some grants to initiate the model - regardless, something must be done for thousands of now senior women. I love this from the case statement:
"In the USA, many of our senior women are in need, many are homeless, some served our nation in the military, raised families, worked outside the home, too – others did all of that, and more. The plight of women is not improving in America. Far too many women are also living alone, some with assets, yet by still by themselves, others with nothing after raising families, and thinking they had “security,” or insurance, or a plan that would include their lives, others thought their work was being reported to Social Security by employers or their husbands and it was not—hence, any or all of these women are suffering now, in ways that can be addressed." Such will also continue for the women in their 30s-40s today!
C jay, thanks for the info!! It is very much appreciated. I’ll be moving her within the next week. The place wasn’t my first choice, but the second….sort of like wanting the Hilton but accepting Motel 6. The "Hilton" claimed that they were concerned that she may need a more secure facility. I pray this will all work out. At least the 1st choice recommended the second choice I’d already picked on my own….I think, anyway.
I read your other post first. The "career schools" and their certifications have gotten out of hand. For many of those positions on-the-job training (providing the facility is decent in the first place) is sufficient. I’ve seen healthcare facilities, both non-profit and for-profit as well as government run continually try to squeeze more and more out of their truly licensed professionals and push more duties on "unskilled" workers. Patient to care giver ratios are horrendous. Patient to pharmacist ratios are even scarier in hospitals. My system just went to downtime, so I can actually reply right now:). As I type this, the acceptable pharmacist to patient ratio is 50-1 for safe care. I currently have about 200 patients, 3 new dosing consults, broken equipment (i carry a tool bag to work), etc. Hospitals mistakenly think that nothing goes on at night. I’ve been fighting for more help for over a year. They are giving me an extra tech, gee..that helps, the liability is getting huge. I pray daily that I do not make an error that causes harm to one of my patients.
Since I used to work for 2 different federally run hospitals (VA and IHS), I am not a big proponent of government run healthcare. I am in favor of healthcare reform. Pre-existing conditions cannot continue to be exclusionary!!! Health insurance needs to be affordable, etc. I’ve unfortunately seen too many examples of poor funding, bottom of the barrel healthcare providers, etc to ever want to receive my care at a government facility. My latest horror story comes from the VA. My fiance’s dad was in the Temple VA for over a week at which time they decided that he needed a pacemaker. We drove down for the procedure. When we asked why they weren’t putting in a pacer/defibrillator, he said they told him that he didn’t need it. Fast forward about 6 weeks. He collapses in Wal-Mart and we take him to a private facility in Waco. The cardiologist discovered 6 blockages in the cath lab (one so severe that he had to call someone else to clear it, which took almost 3 hr..so they only "fixed" 3) and the pacemaker was HOOKED TO THE WRONG SIDE OF THE HEART!!! They requisitioned his records from the VA and a general surgeon NOT a cardiologist placed the pacemaker! Unbelievable. My sweetie and I are both healthcare professionals and we never thought to check the credentials of the person performing the procedure since the standard of care in the real world is that a cardiologist does the procedure, we also assumed that all appropriate testing had been done prior to the pacer insertion. If this gets by seasoned healthcare professionals, regular folks don’t have a chance. I wish I had all the aswers to the healthcare quandry. While insurance companies and all the other big fish need some serious ethics reform, we do have folks that need to accept some personal responsibility for their care. When my mom was able to work, she refused to pay for health insurance, long-term care insurance, etc offered through her employer. She expected us kids to just provide for her. Her doc saw her for free and sent me the bills for labs, etc. So, she has in part created her own situation as have many others. I’ll still pony up and take care of her, but I have to admit, sometimes I get a bit resentful especially given the abuse issues we’ve talked about before. Incidently, when mom was in her early 50’s and working, just not managing her life well, my grandpa stepped in and bought her a house and gave her a car. She’s a real piece of work. I will also do everything possible to help insure that my children will not have to go through this with me.
Stacy, no one in America can guarantee what others may NOT have to do for them - our country doesn’t care about the ill, disabled, and disadvantaged, but you are trying. It’s obvious, too, that your Mom was never well - abusive people are very sick, indeed. You are doing what you must - and that will hold you in stead. We all must step-up to the plate in such situations, and we benefit in some way. My "bracelet" says, "Would I do this for someone … ?" In all cases, the answer has been "YES" so I do it for family. ;-)) (I’ve taken neighbors in to keep them from institutionalized care.)
Your Mom’s condition is beyond safe care at home, but our nation can spend billions fluffying out other countries problems, indeed millions on promo marketing for a sports event, yet our ill citizens are trashed and thrown away.
BTW if you email Senior Women of America, and put "Cjay" in the subject line, they’ll forward an email to me. I’ve love to ‘chat’ more with you about healthcare in general. Right now a colleague of mine, an MD, is so exhausted, he spent 11 hours last week trying to obtain equipment and meds for 2 ill patients - yet he can merely go speak in another country and get same for one of that nation’s citizens because he is an MD! And, we sit here as Americans fragmented by a "DC" that is not doing one thing for any of us, either side. Sounds to me like 1938 Eastern Europe. I hope not.
Stacy, I did some checking around the country — on this situation with your Mom. One of the prevailing problems is that the "centers" are for-profit groups who much satisfy their investors, and … they won’t pay enough to maintain competent professionals, so the turn-over is severe, literally a serious problem. These situations lead to an inability to care for their clients, regardless of physical or emotional needs. Until there is health care reform, and the for-profit sector is removed this is going to only get worse in our nation. As a writer emailed me from the Netherlands - "we don’t understand why America will not care for its people… " We don’t either, except the dichotomy is shattering - the money that is going into fighting women’s rights to health care, termination of pregnancies, etc. — it does not make sense when we throw away the disabled, seniors, ill, and developmentally challenged.
Several professionals have told me that "even in the ILCs (independent living centers)" they ‘take in’ people who need far more care, and being an ILC cannot use full bed rails (only 1/2), so their residences are further endangered all the time. In the facilities that are mandated to care for people with AZ, they cannot maintain staff because they are unwilling to pay fair wages for professional help, and the in-ept staff haven’t a clue what their actions generate - don’t understand clean, much less sterile techniques, balance, hazardous surroundings, on and on. Our nation has come up with a "certification" for nurses aids! That was perpetuated originally by the "career colleges" to make money (community colleges do a bang-up job of career education for far less $$) - so now we have a group that insists they deserve more pay because they are ‘A CNA!’ when in fact, RNs used to direct such work groups on the floors, along with orderlies - male counterparts who cared for the male populations.
This nonesense of ‘certification’ extends to many quasi-professional groups now including fund raisers (who now have an "Advanced" certification too with letters after their names that mean nothing to the public much less philanthropists), sales and marketing people, etc. Education and training has been set aside and mediocre work performance put in it’s place. That does not relieve our nation, or us from caring for one another.
Just a "few thoughts…." ;0))
Judith thank you, not to many people talk about this disease openly, especially if it’s in their family.
Stacy your Mom’s lucky to have you.
I wish with every tear that is running down my cheek my mother would have been a better daughter. She stuck my Grandmother Helene into a Nursing home and never went to see her.
I called Grandma every Sunday, even when her memory was getting really bad, she’d sit by the phone not always sure why but she sat there on Sundays and waited and I never missed a call and always at 1 pm. I went to see her for Christmas in 1995 two weeks before she went home (to Jesus) and she thought I was my Mom, I went along with it, no need trying to explain things, it only frustrated her. We went for a walk on the beach (Lake Erie in the Winter) crazy I know, and then for Lobster dinner and we spent a lovely weekend together. When I got the call she had gone I was devastated. My Mother didn’t go to the wake, the service, she left everything up to us, her kids to handle, my one younger sister and I did. She had no insurance, so we begged, borrowed to come up with what we could. The following summer I took out second mortgage and bought a plot, stone and took my kids back to western NY and we had a quite, small service and buried her ashes. I had to trick my mother on a ride to take to where I buried my Grandmother.
I still miss her, it’s been 16 years, and when ever I visited on my way to where ever I was going the Cemetery was always my first stop so we could have a one sided talk.
I have so many warm loving, caring memories of my Grandma Helene, that only a smile and tears of joy come to me when thinking of her.
That disease only took a part of her, not the real her, she’ll always be my Grandma who snuck me out in the middle of the nite to go get some hot coco and eggs at the local Deco Dinner, or who showed up for everyone of my school plays, who taught me to sew, cook, clean a floor the right way. I miss you Grandma, I love you.