Tuesday, January 21, 2014

Advising Alzheimer's Caregivers About Assisted Living

I am a caregiver for my wife, Clare, who was diagnosed with early or young onset  Alzheimer’s Disease (AD) in 2009.  Four years later, as Clare started to decline much further and at a faster pace, my caregiving responsibilities started to multiply quickly.  Day care programs were not providing me with enough respite time, and when together each afternoon and evening we would often argue about little things ... although we had never argued like that before.  Our “fairy tale” 46 year marital relationship was becoming increasingly strained; whenever I would remind Clare to do something she had forgotten, she would yell at me, telling me she “was not a baby” and didn’t need me to remind her of what she needed to do.  But, of course, as her AD worsened she couldn’t remember the most basic things she needed to do and I had to remind her again and again.  I still love Clare as much as I ever did, but our relationship began to morph from one of loving husband-wife to one of loving parent-child.

I knew that it was time for me to think about an Assisted Living placement at some point in the near future, so I started visiting websites of every Assisted Living Residence (ALR) in our area.  I had listened carefully at my weekly spouse support group meetings at the Long Island Alzheimer’s Foundation (LIAF) and read carefully in my online support group chat rooms whenever others discussed ALR placements.  And I learned many things.  For one, I learned that since Clare has AD, I needed to find an ALR with a separate “lockdown” wing for resident safety since many people with AD have a tendency to wander.  I also learned how fortunate I was to already have long term health care insurance that would pay the considerable ALR monthly expenses.

But the most important thing I learned from members in my support groups, or so I thought at that time, was that I had better not miss that ALR “window of opportunity” to place Clare.  Several members noted that if a person with AD declines significantly in the ability to handle even one of the Activities of Daily Living (ADL) independently, that ALR window may be closed.  With Clare continuing to decline faster and faster, my stress started increasing exponentially.  I worried that that by the time I was emotionally ready to place Clare, she might no longer be able to ambulate, eat, bathe, transfer, or dress independently, or she might be completely incontinent.  I was led to believe that if I missed that “window,” my only option would be to place Clare in a nursing home or hire live-in help when I could no longer care for her by myself.  A number of support group members also said that even for someone already residing in an ALR, worsening declines in some key ADL areas ... such as inability to transfer without assistance or complete incontinence ... could cause the ALR to discharge the resident.  One person did say, however, that an ALR allowed her husband to remain when unable to transfer after she agreed to pay for a private health aide to provide additional assistance.  But I was told that practice was very unusual.

As I worried more and more about missing that “window,” I prepared a detailed evaluation form to bring with me on ALR tours.  I revised questions from online sources, added my own questions, and put together a new form.  I then asked two exceptional LIAF social workers, Alana and Tori, to collectively review my form.  They suggested several additional questions, the last one being, “What circumstances would result in a resident being discharged from the facility?” Evaluation form in hand, I then scheduled tours of six different ALRs and we made our first visit.
We both liked the first ALR we visited, and that evening I was reviewed all of the director’s responses to my questions, trying to process all we had seen and heard that afternoon during our tour.  I realized that I had forgotten to ask the question about discharge conditions, so I emailed the ALR director requesting this additional information.  Her response was totally unexpected, and one that sent me to do more research before visiting any other ALRs.  The director said that, due to their EALR certification, they would not need to discharge Clare unless she was a danger to herself or others, or had such acute medical needs that she needed to be under a doctor’s supervision 24/7.

EALR certification?  The ALR director had never mentioned anything about EALR certification during our tour.  I didn’t even know what those letters stood for.  After receiving the director’s email, I double checked both the brochure she had given me and their website, but I could find no mention of EALR certification.  I now had a lot of information about that ALR’s staffing, activity programs, common areas and facilities, meals, sleeping accommodations, and costs.  However, I also realized that I still needed to learn more, so I went online to research EALR certification.
According to the NYS Department of Health website, an ALR, even one with a “lockdown” area for residents with Alzheimer’s, is only licensed to provide a “basic” level of care.  As such, an ALR is not permitted to admit people with Alzheimer’s if they are unable to independently walk, climb stairs, transfer (or are chairfast), or have unmanaged incontinence. 1   So it turned out that my support group was correct about that fact, but I mistakenly thought this was applicable to all ALRs in New York.  Not true.  I also learned from this website that some ALRs in New York have an “Enhanced Assisted Living Residence” license (EALR) and/or a “Special Needs Assisted Living Residence” license (SNALR) that permits them to admit and retain people with Alzheimer’s at any level of care with just one exception ... prior to admittance that person cannot require 24/7 skilled nursing or medical care.  However, if after admission residents should require this advanced level of care, an ALR with EALR or SNALR certification can provide that 24/7 skilled nursing or medical care.  The effect of this continuity of care allows AD residents to age in place without needing to be discharged. 2

This new information was a complete “game changer” for me.  After my research that evening, all that stress to place Clare in an ALR before missing that “window” was gone. Sure, she was continuing to decline, but she was a long way from needing 24/7 skilled nursing or medical care.  I knew that evening that I would only place Clare in an ALR that had EALR or SNALR certification, so there was no “window of opportunity” to miss.  There was no “window” at all.  I was relieved to know that in whatever ALR we would select, Clare would not be automatically discharged to a nursing home or hospice in the future as her condition worsened.  Absent one of those two caveats ... being a danger to herself or others, or requiring 24/7 doctor supervision ... Clare’s ALR would be her “final home.”  With this knowledge, I then called the other ALRs we had planned to visit.  Those without such certification were immediately eliminated from consideration.  During our tours I also learned that ALR admission wait list policies varied.  In some ALRs, when a prospective resident at the top of their wait list is informed of the availability of a bed and rejects it, the prospective resident then goes to the bottom of the wait list.  However, in some ALRs, once at the top of the wait list a prospective resident who rejects an available room remains at the top until that person either accepts the next available room or requests removal from the wait list.  Since we could not be sure of just when Clare would need to be admitted to an ALR, we also eliminated all facilities with unfavorable wait list policies.

Each ALR we visited had a different “ambience.”  We observed staff interactions with residents and resident interactions with each other during meals and activities.  We saw many differences in quality, scope, and location of activities and activity centers, bedrooms, lighting, furniture, and a variety of amenities.  We noted that some ALRs had visiting clergy, and onsite weekly religious services.  Some even provided escorted transportation to nearby churches and temples.   After we completed our tours, we agreed on the EALR certified facility that we thought offered Clare the best likelihood for quality care and happiness, and I placed Clare’s name on their admission wait list.  Ironically (or poetic justice?), the ALR we selected was the first one we visited, the one whose director enlightened me about the existence of EALR certification.

The website of the Empire State Association of Assisted Living cites data reported by the NYS Department of Health in 2008 indicating more than 65,000 beds are available in facilities that provide assisted living in New York.  Of that total, fewer than 8000 beds were in facilities with EALR or SNALR certification. 3 I have since learned from AD spouses across the country that it may be hard to find other states with ALRs that allow residents to “age in place.”  However, I also know that many states revise ALR regulations as their population needs change. 

Health care professionals and social workers who counsel AD caregivers may not always have time to remain well informed about state certification policies and practices of ALRs in their local communities.   However, they do have time to advise caregivers to ask questions about ALR admission, discharge, aging-in-place, and wait list policies.   I am indebted to Alana and Tori, the two LIAF social workers who suggested I ask such questions.   Even if there are no ALRs with the equivalent type of EALR or SNALR certification in your community, there still may be significant differences among local ALRs.  Informing caregivers to ask about such differences can be extremely helpful.  This knowledge can be a “game changer” for those you counsel ... just as it was a game changer for me. 

1.  Assisted Living Reform Act, State of New York Department of Health, pp. 2-3.  Available at: www.ltccc.org/key/documentsALRDearAdminLetter060305.pdf.  Accessed on 5/21/13.

2.  Assisted Living Reform Act, State of New York Department of Health, pp. 4-5.  Available at: www.ltccc.org/key/documentsALRDearAdminLetter060305.pdf.  Accessed on 5/21/13.

3. “Frequently Asked Questions.”  Empire State Association of Assisted Living,

p. 2.  Available at: www.ny-assisted-living.org/consumer/faq.htm.  Accessed on 5/21/13.

Assisted Living Residence Evaluation and Question Checklist

Date Visited: _______________________
Facility: ___________________________    Contact: ___________________________
Location: __________________________    Phone: ___________________________

Rating, 1-10 (10=Excellent, 5=Average, 1=Terrible)
Factor Considered
First impressions

Clean, cheerful, well maintained?________________________
Appropriate demographics?_____________________________
Residents seem happy/engaged?__________________________

Common areas

[  ] Game room:_______________________________________
[  ] TV room:_________________________________________
[  ] Movie room:______________________________________
[  ] Swimming pool:___________________________________
[  ] Library:__________________________________________
[  ] Computer room:____________________________________
[  ] Garden/walking paths:_______________________________
[  ] Other:____________________________________________


Is there a long wait list for particular rooms?________________
What furnishings are provided? [  ] Bed   [  ] Dresser   [  ] Desk   [  ] Nightstand   [Other]:________________________________
What furnishings can we add?___________________________
What safety features/amenities do bathrooms have?
[  ] Grab bars   [  ] Walk-in showers   [  ] Whirlpool baths  
[  ] Other:____________________________________________
Are there call buttons by the bed?_________________________
Are there smoke detectors/carbon monoxide detectors?________
Are TV/cable/phone provided? Costs?_____________________
Are all bedding/blankets/linen/towels supplied?______________
Are these changed weekly?______________________________

Resident care

Does each AD resident have a written care plan?_____________
Is family involved in this?_______________________________
How often is the plan reviewed/revised? ___________________
What is the staff’s role with assisting resident with activities of daily living (ADLs)?___________________________________
Does facility order/administer all medications? ______________
Does staff monitor personal hygiene? [  ] Bathing   [  ] Oral care
[  ] Other:____________________________________________
Does staff monitor continence issues?_____________________
Does staff observe for signs of higher care needs?___________
What is the role of the onsite nurse?_______________________
When does the resident see a physician? ___________________
Does facility assume responsibility for scheduling routine medical care (eg, annual physical, specialty monitoring)?_____
Are costs of all medications and physician visits included in the monthly facility fee?___________________________________
If not, may the family supply the medications and have the facility administer them as directed?_______________________
If a resident prefers to sleep until noon and skip breakfast, is that OK?________________________________________________
When is free transportation provided to residents?____________
Does facility wash personal clothing?______________________
How often is it washed?________________________________


Are background checks, references, and certification required of all staff?_____________________________________________
What special training has staff received for working with cognitively impaired residents?___________________________
Is the facility fully staffed on nights and weekends? __________
Is there a dementia wing?__________ If so, what is the staff to resident ratio in this wing?______________________________
What is the staff turnover rate?___________________________
How long are staff shifts?_______________________________
What if a resident is unhappy with the aide assigned to him/her?_____________________________________________
Aside from the nurse, are any other medical personnel onsite?______________________________________________

Activities and recreation

Aside from the daily program, are there selections of daily alternative activities if a resident doesn’t like a scheduled activity?_____________________________________________
How often are there trips or activities scheduled off-site?________________________________________________
Are any religious services held onsite?_____________________
If a resident chooses not to be involved in activities, will their aide ‘push them’ to become involved, or leave them alone?  Why?_______________________________________________

Food and dining

What are the scheduled times for meals in the dining room?______________________________________________
Aside from the 3 meals, are snacks available all day?_________
What types of snacks/refreshments are provided?____________
Is there assigned seating in the dining room?________________
If so, how is seating determined?_________________________
Can guests stay for dinner?______________________________
If so, where do they eat and what is the cost?________________
Can meals be eaten in rooms?____________________________


What daily/monthly costs are not included in the room rent?________________________________________________
Once admitted, how often and by how much can monthly cost be raised?___________ ____________________________________________________
What if a resident is unhappy and must be removed after a few days or weeks? What is your refund policy?_________________

Considerations for dementia residents and changing needs

Are all exit doors alarmed and all dementia residents in a secure lockdown wing?______________________________________
How many rooms are in the dementia wing?________________
What is the average age of these residents?_________________
How many are younger than 75 years?_____________________
Does an aide bring cognitively impaired residents to/from the dining room?_________________________________________
Does an aide bring cognitively impaired residents to/from activities?____________________________________________
Should residents need a higher level of care, how much notice is given to the family to make arrangements for transfer to a nursing home or other facility?___________________________
If higher level of care is needed, can residents remain in the facility if the family pays for additional private nursing help?______         
Do any staff members at the facility currently provide such help, or have they done so in the past?__________________________
Are there any other reasons besides higher care requirements or major psychiatric issues that would lead the facility to discharge a dementia resident?____________________________________________

Emergency and discharge considerations

Are there any resident needs that cannot be met at this facility?_____________________________________________
In the event of an emergency, what hospital will residents be taken to?____________________________________________
When will the family be informed of such events? Prior to transport?____________________________________________

Visitation considerations

What are the visiting hours each day?______________________
Can a spouse or family member sign out residents anytime?____________________________________________

Placement considerations and certifications

What is the typical wait period between your assessment and placement?___________________________________________
After placement, do you recommend a period of time before a spouse contacts/visits the resident, or is this a personal decision by the family?________________________________________
Does your facility have any special licenses or certifications that enable you to accept and keep residents at higher care levels?______________________________________________

This checklist is a companion resource to the article “Advising Alzheimer’s Caregivers About Assisted Living” by Allan S. Vann, which appeared in the January 2014 issue of Annals of Long-Term Care. Permission to copy and distribute this document is hereby granted by HMP Communications.


Published in Annals of Long Term Care, January, 2014, Vol. 22, No. 1,  pp.17-20.  Access at: www.annalsoflongtermcare.com/article/advising-alzheimers-caregivers-assisted-living

Sunday, January 19, 2014

Gender Adjustments for Alzheimer's Caregivers

For quite some time, I was the only male in my Alzheimer’s Disease (AD) spousal support group and quickly discovered that I could not resolve some problems for my wife, Clare, in the same way as some women were resolving similar issues for their husbands.  It’s not “who has it easier,” because both male and female spouse caregivers have a very difficult time.  However, based upon observations in my weekly spousal support group and what I’ve read in my online support groups, there are some differences along gender lines.  Here are some of them:

Getting dressed  at home - Eventually, people with AD have difficulties getting dressed each morning and that becomes a time consuming activity.  For some, getting dressed each morning is difficult because of the need to locate and then choose what to wear.  For others, it may be difficulty making an appropriate choice of clothing for that day’s particular weather conditions.  To avoid wasting time each morning, many women in my group simply made those decisions for their husbands, setting out clothing for them to wear each day.  When I picked out clothing for Clare to wear, she would say things like, “I don’t like you doing that for me.  Stop trying to manage my life.”  I tried asking Clare to select her next day’s clothing the night before, but the next morning she would try on several other outfits before being happy with her choice.  So one gender difference may be for male caregivers to allow extra time for women to get dressed each morning, and plan accordingly.  

Driving  – Once a person with AD stops driving, the caregiver must make an adjustment.  If the person with AD was the sole or primary driver in the family, the caregiver will now have to do all the driving, or rely upon neighbors, friends, relatives, public transportation, taxis and car services.  More often than not, the female caregiver will now have to do more driving.  My adjustment after Clare’s diagnosis was relatively minor since I had already been doing all the driving when in the car together.  As the lone driver, however, I had to become much more attuned to my body and surroundings.  Fatigue, alcohol consumption, weather, road conditions, and possibly even problems driving at night may become new factors to consider knowing that one’s AD spouse can no longer help with the driving anymore. 

Household Tasks  – Clare and I were both born in households where cooking and housework were considered “women’s work,” but as members of the first “baby boomer” generation we shared cooking and household tasks after we were married.  I now do all the cooking (or purchase meals from supermarkets and restaurants), and household tasks, necessitating an adjustment in how I spend my weekly time.  For the women in my support group, their main household task adjustment was learning how to do minor ‘handy man’ projects in their home.

Financial and legal matters  – Many women undergo a very steep learning curve to learn about and handle everything from overseeing their financial investments to making sure that all of their end-of-life documents are in order … wills or trusts, living wills, health care proxies, and durable power of attorney when their husbands are diagnosed with AD.  Their husbands often handled these matters without their active participation.  Many female spouses say that meetings with financial advisors, accountants, and attorneys are stressful, sometimes overwhelming, and often confusing.  For me, although my wife attended virtually every meeting about financial and legal issues, she always deferred to me to make all final decisions.  I feel quite comfortable handing legal and financial matters completely on my own going forward.  In these two areas, most male caregivers may have it easier.

The bottom line  – Health care workers should inform Alzheimer’s caregivers about  upcoming adjustments to prepare for once their loved one receives an AD diagnosis.  Regardless of gender, caregivers should take three important steps immediately ... join a support group, meet with an attorney who specializes in eldercare issues, and meet with a financial advisor.   1.

1. Allan S. Vann.  “Three Important Actions for Alzheimer’s Caregivers.”  Clinical Geriatrics.  October 1, 2013.  Access at:

Published as a guest blog column in McKnight's Long Term Care News, January 10, 2014.  Access online only at: www.mcknights.com/blog/archive/8160/

Tuesday, January 14, 2014

The 'How' of Easing the Transition to Assisted Living

(Originally titled, “Tips to Ease the Transition to Assisted Living”)

In September, 2013, I placed my wife, Clare, in the dementia wing of an Assisted Living Facility (ALF).  Her Alzheimer’s Disease (AD) had reached the point where she needed assistance with all but one of her Activities of Daily Living (ADLs).  It was either an ALF placement or hiring 24/7 home health care aides, and we had long ago decided that in such an eventuality we would choose the ALF option.  I fully realize that not all caregivers may be able to take the steps I took due to the condition of their loved one, the availability of assisted living facilities in your geographic area, or financial considerations.  However, here are several suggestions based upon the steps I took as Clare’s 24/7 caregiver to ease her transition from our home to the ALF.
1.  Divide the ALF placement issue into a two-step process.   First select the “where” your loved one will go, hopefully well enough in advance so you are not rushed for time.  Once this decision is made, the “when” will allow you to move forward without delay.
2.  Select an ALF with a favorable wait list policy.  At some ALFs, once you place a deposit and arrive at the top of the room wait list, your name remains at the top of the wait list until you agree to accept the room.  You can pass again and again and still remain at the top of the list.  However, at some ALFs we visited, if you reject a room when it is available, your name goes to the bottom of the wait list.  If you place your loved one on a room wait list at an ALF with a favorable wait list policy, you will have more flexibility to select the “when.”

3.  Prepare your loved one to accept an ALF placement.  I fully realize that not all caregivers can have a discussion with a loved one about an ALF placement for a variety of reasons.  But if your loved one is still highly verbal as Clare was and still is, you may be able to discuss such an important issue during lucid moments.  I wanted Clare’s “takeaway” from our discussions to be what I referred to as the “half loaf” scenario.  I reminded her that we had just celebrated our 46th anniversary and, until recent months, we were lucky enough to have the “whole loaf” ... a fairy tale marriage that was absolutely wonderful.  We had rarely argued about important things during our marriage, but now we found ourselves arguing with each other every day.  I would try to help Clare but she would insist that she could do this or that without my help.  She’d yell things like, “Stop trying to manage my life.  You’re treating me like a baby.  I’m not a baby.  I can do that for myself.”  But, of course, she couldn’t do this or that by herself anymore.  She’d shout at me, I’d get frustrated and shout back, and we both hated what was happening in our marriage.

So I told Clare that whereas her AD has prevented us from continuing to have the “whole loaf” anymore and our lives had changed dramatically, an ALF placement would at least allow us to keep that “half loaf.”  The ALF would assume all of the daily responsibilities for her ADLs and that way there would be nothing for us to argue about anymore.   I promised that I would visit Clare each day and with the ALF taking responsibility for her ADLs, all of our time together would be quality time.  We both liked the idea of that “half loaf.”  I reinforced that concept by reminding Clare how much she was enjoying her day care programs and the ALF would provide her with an even better quality day care program.  I also reminded Clare that I would still take her out of the ALF from time to time to eat at her favorite restaurants and spend time with friends.  Clare internalized the “half loaf” concept and that made all the difference in the world to her attitude and eventual acceptance of an ALF placement.

Although Clare had lost interest in virtually all of her former hobbies, she still loved listening to and singing along to music.  Research has demonstrated that music memory seems to linger longer than most other memories for those with Alzheimer’s.  Aware of the assisted living facility’s “Activities Calendar,” I knew that they had at least one and often two musical activities each day.  So I timed our visits to allow us to enjoy musical programs before leaving to “leave a good taste in her mouth” so Clare would see that she would have enjoyable activities once she moved in.  Once we listened to a singer guitarist whose songs from the 1960s were very familiar to both of us, and we sang along with gusto.  Another time it was a singer with taped background music whose repertoire ranged from big band to Broadway show tunes.  Again we sang along and the smiles on Clare’s face made me feel very happy.

4.  Take a few days to move in.  When I was notified by the ALF that a room was ready, I decided to spread out the move-in process over a three day period.  I had already prepared a comprehensive packing list, but I wanted Clare to help choose which personal belongings she wanted to bring with her.  I labeled all of Clare’s clothing and other personal items as directed by the facility.  Then, with help from family and friends, over the course of parts of three days we moved in Clare’s clothing, jewelry, toiletries, etc. and placed everything where Clare could find it.  We set out lots of picture frames on tables, placed a dozen plants around the room, hung quite a few paintings and posters, and even brought in her beloved rocking chair to make her room feel more “homey.”  By taking several days to do this, Clare’s room made her feel more comfortable when she actually moved in.   On each visit I also made sure that Clare participated in a musical activity before we left, and she enjoyed each activity.  By having her room already furnished with many familiar objects from home, and by having enjoyed those musical activities, move-in day somehow seemed less abrupt than it might otherwise have been.  This helped to ease a lot of the emotional strain and pain of that difficult day ... both for Clare and for me.

5.  Once admitted to the ALF, be prepared to deal with “glitches” effectively.  Clare made about as wonderful an adjustment to the ALF as her new home as one could reasonably expect.  Within days she had made some good friends, she liked her aides, she enjoyed her program of daily activities, the meals, her room, etc. However, several “glitches” arose in those first few days and the Director asked me to be patient until he had the opportunity to sit down personally with all of the aides to review Clare’s needs with them.  With three complete changes of personnel every eight hours, it took several days for the Director to do this.  On some visits I’d notice that Clare wore the same clothing she had worn the day before.  On some visits I’d notice Clare’s hair had not been shampooed.  I obtained the Director’s email address and direct phone line and, for those first few days, was calling or sending emails on a daily basis to indicate needs to be addressed.  Since I visited Clare daily, I was also able to sit down with the Director, his assistant, his superior, and the head nurse during those first ten days until all of the glitches were dealt with.  In any large bureaucratic organization, there will inevitably be glitches now and then, so I know I must expect occasional slip-ups.  But I will follow up immediately each time such glitches may occur.  I also prepared a comprehensive list of questions for the Director to review with both daytime and nighttime aides to provide me with the information I needed to be further assured  that Clare was receiving the quality of care I expected for her.

6.  Complete other ALF-related caregiver tasks quickly.  I wanted to minimize disruptions to Clare’s new daily routines so she could socialize, make friends, and experience different activities.  I decided to visit daily during the same 3-5 p.m. time period, one in which she would not be missing any of her favorite activities.  It also backed right up to dinner time, so separation is natural when I leave after bringing her into the dining room at 5 p.m.  I had already scheduled various morning and afternoon doctor and dental appointments for Clare prior to her ALF admittance, so I rescheduled all appointments into the following month during the same two hour time slot when I visit with Clare each day.  For those who have long term health care policies, it is also important to quickly initiate a claim with the insurance company and then follow through on completing forms and submitting documents that are required.  Don’t let yourself get sidetracked because some documentation is time-sensitive.  I also had to schedule appointments with personnel representing the insurance company to evaluate Clare with respect to eligibility for insurance coverage.  Caregivers using Medicaid, or private payers without insurance, will also have notifications to make along with paperwork to complete and documents to provide.  

7.  If you decide to visit regularly, consider a backpack or carry bag.  For the first few weeks, I wore a small backpack each time I came for my two hour daily visits.  I kept a pad and pen inside to allow me to jot down observations or concerns to follow up on with the director, nurse, or some other person.  I also kept a folder with copies of previously sent emails in case I needed to follow up with someone in person on any unresolved issue.  Also in this backpack was a “staff list” I had made up so I could learn the names of Clare’s aides as quickly as possible and I referred to this list on almost every visit.  The backpack also allowed me to conveniently bring in bulky picture albums or trip albums from time to time to refresh Clare’s memories of people or travels.  A final item in my backpack was a copy of the “Daily Activities Calendar” so I could review with Clare some of the activities of each day.  Sadly, on most days Clare was unable to recall anything about any of the activities, but sometimes this daily review led to a discussion.  By Clare’s second month, a small carry bag replaced the backpack.
Some final words about an ALF placement:  For most caregivers, placing a loved one in a setting outside of the home is the most difficult and emotional decision they will ever make as caregivers.  The placement itself may also be a traumatic event for the loved one with dementia.  Depending upon the cognitive level of the person with Alzheimer’s, a caregiver may or may not be able to discuss various aspects of this placement.  And the person with AD may or may not be accepting of such a decision.   I was very lucky.  Clare knew, in her lucid moments, that it was time for placement. 
We prepared as best as we could, tried to make the actual move as easy as possible, and the ALF staff did the rest.  It was a very smooth transition and Clare adjusted beautifully.  Clare is now being well cared for in a safe and secure environment ... and she is happy.  We hope to enjoy our “half loaf” for as long as we can as we embark upon this next phase of our Alzheimer’s journey. 

The following was an addition to the original submission:
 In the course of the back-and-forth revision process with the editor, I had indicated that I was now faced with a new question:  I had placed Clare in an assisted living facility ... so now what?  The editor asked me to expand on my thoughts and I submitted this 1249 word “coda” as an addition to my original submission. This was printed as a separate column immediately following my article, under the heading ...
 You’ve Placed Your Spouse in Long Term Care ... So Now What?

Placing Clare turned out to be a complete “win-win” decision.  She is receiving high quality care in a 32 resident lockdown dementia unit (“Reflections”) that is part of a large ALF.  On most days, Clare has organized exercise periods twice a day ranging from zumba and yoga to walking, stretching, and fitness activities.  On most days she has at least one arts and crafts activity and one music activity, and on many days she has two different musical activities ranging from resident sing-longs to listening to visiting musical entertainers.  She participates in a wide range of daily activities ... balloon volleyball, billiards, chair dancing, various word and trivia games, and the list goes on and on.  There are matinee and evening movies seen in a dedicated movie theatre room ... approximately 50 movie theatre fixed seats, complete with a popcorn machine!  There are daily socials with different delicious snacks served each day, and the daily meals are of restaurant quality with at least half a dozen choices of entrees for each meal.  And there are several outings each week using the ALF bus to take both Reflections and non-Reflections residents to see musicals in local theatres, to enjoy special meals at various neighborhood restaurants, and to visit local sites.  One thing is for certain.  Clare is now leading a very active life, physically and socially!

Prior to placement, it was very hard for me to make sure that Clare ate nutritious meals.  On the four days each week when I brought her to day care programs (that provided me with badly needed respite time), more often than not Clare refused to eat breakfast and ate very little for supper.  On the other three days, she ate poorly ... mostly ‘junk food’ when she ate anything at all.  On those four day care days, I had to wake her after “only” 11 hours of sleep.  When not going to day care, she’d sleep for 14-15 hours.  Whenever I’d suggest we go for a walk, Clare would always say no ... she said she was too tired.  She felt tired all the time, even right after waking up from 15 hours of sleep, and never wanted to do anything but sit in front of the television and watch the same TV shows, over and over, despite being unable to tell me what show she was watching or what was happening even while she was watching the show.  That was her life.

Now, after being in the ALF for several months, Clare looks younger and healthier than she has looked in years.  Friends who visit all agree.  Now that she is exercising regularly, eating well (she now eats a full and nutritious breakfast, lunch, and supper!), and socializing with friends each day, Clare no longer sleeps more than 6-8 hours per night!  She is up late gabbing with friends over coffee/tea/cookies in either the Reflections dining room or in her own room or one of her friend’s rooms, and she gets up on her own by 6:30 each morning to get going on her new day!  When I visit with her each day from 3-5 p.m., she is always smiling and telling me how happy she is and that she has had a good day ... despite being unable to tell me about even one activity she participated in that day.  She is never able to recall where she went on any outings ... not even if I arrive at the same time as her ALF bus returns and I greet her as she leaves the bus ... nor can she ever tell me about any meals.  BUT ... each day when I visit she looks happy, tells me she’s happy, and the aides tell me she is eating well and is happily engaging in all of their daily activities.

These daily visits and positive reports from the aides and their supervisors have all helped to ease much of my initial sadness at placing Clare.  I still have those occasional “dark moments” when my mind reflects upon my “living widowhood,” but I try to stay away from those dark places in my mind because if I dwell there too long I’ll spend my days and nights totally depressed ... and in need of lots of tissues.  At this point, I really cannot say what the future holds for me ... a 67 year old man lucky enough to be approaching the 47th anniversary of what had been, until these past few years, a “fairy tale marriage.” 

I try to fixate on the positive ... that even though Clare is sinking deeper and deeper into her AD, we still have “half a loaf” ... a few hours each day when we can hug, kiss, and just enjoy our time together.  I love making her laugh and smile, and I love hugging and kissing her.  She is and always will be the most special person in my life.  I know that I will continue to visit with Clare every single day without fail as long as she still knows who I am, unless severe weather or some emergency prevents such a visit.  I know that I will cherish those few hours we spend together each day even if I now must do the talking and carry on the conversation for both of us.  I know that I will continue to cherish those times when I take her out to a restaurant by myself or with close friends.

But I also know that it is time for me to carve out a new phase of my own life, and as I make my recovery from recent hip replacement surgery I am looking forward to returning to previously enjoyed activities I had to place on hold these past few years when I was Clare’s 24/7 caregiver.  Golf, for example, is one such activity.  I miss playing, I miss the camaraderie with friends, and I miss the enjoyment of being away from life’s stresses for half a day.  So returning to past activities will surely be a part of my future.  But there are also many questionable areas to re-visit.  Until Clare’s AD worsened to the point where it was very difficult to travel, we used to take long international trips.  Will I ever go on such trips again?  We used to see Broadway plays and new movies regularly.  Will I ever go to a movie theater or playhouse again?

Sure, I can go to such activities with friends.  Or I can go by myself.  But will I want to do so with friends or by myself after never doing so without Clare ever since we married a week after we graduated from college?  Will I want to meet another woman at some point in the future to provide me with the companionship and ongoing friendship I always had with Clare, not to mention the attention to my physical needs for giving and receiving love?

Only time will tell.  In my real and online support groups, I’ve noticed that each member who has either lost a spouse, or whose spouse no longer is even aware of who they are, has handled similar questions in ways that best befit their individual personalities.  I suppose that, over time, I will do what I want do based on my personality and that will be that.  But whenever a caregiver places a loved one in an ALF, several months later that caregiver must answer a new question ... So, now what?

Published in care ADvantage, Alzheimer's Foundation of America.  January, 2014 winter edition, pp. 14-17.  (This article may also be accessed at the care ADvantage tab on the Alzheimer's Foundation of America website, available at: www.alzfdn.org.)

Saturday, January 11, 2014

Help Alzheimer's Patients and Caregivers With Online Resources

(Originally titled, "Online Resources for Alzheimer's Caregivers.")

One common gripe of caregivers for loved ones with Alzheimer’s Disease (AD) is the lack of communication from their doctors, especially at or shortly after the office visit when a diagnosis of probable AD is issued.  It is in the period immediately following an AD diagnosis when caregivers and patients have many questions and the most need for accurate helpful information.  Doctors should be providing their AD patients and caregivers with two kinds of information ... medical and non-medical.

First, doctors should inform patients and caregivers about what to expect medically as a result of an AD diagnosis.  They need to explain that whereas no two people with AD necessarily follow the same pattern of decline, some common symptoms and behaviors can be expected as the disease progresses.  Doctors should mention that those with AD may decline extremely quickly over a period of just a few years, or slowly over the course of as many years, but that AD is a terminal disease with no effective means of treatment ... and with no cure.  Doctors should present information on the current medication available, but must be careful to note that such medications have only proved effective in slowing down the rate of decline for a few months to perhaps a year or two for some people with AD. 1.  Doctors should also present information on clinical trial options. 

 However, just as important as this medical information, doctors should also be informing patients and caregivers about helpful non-medical information.  Doctors should discuss the importance of joining support groups to find both emotional support and learn more helpful information from others in similar situations.  Doctors should be informing patients and caregivers about the importance of end of life planning.   And doctors should be informing patients and caregivers about online sources of information.

Currently, the vast majority of AD caregivers I am in contact with report that their doctors never mentioned anything about joining AD caregiver support groups, and never told them where to go or whom to contact to learn more about support groups.  This practice must change.  Increasing numbers of technologically savvy adults will be diagnosed with AD in the years ahead.  Doctors should routinely be suggesting internet sites they can consult for information, help and support.  This is especially important for doctors serving patients and caregivers in areas of our country not well served by support groups.  Online support groups are the next best option in such situations and may even prove superior to ineffective weekly groups, or support groups that only meet bi-weekly or monthly.

I recognize that caregivers can go online by themselves to check out AD sites.  However, one problem in the internet age is the lack of quality control among online sites.  Given their knowledge about AD and what caregivers need to know, doctors can easily screen some internet sites and suggest several helpful websites that can provide immediate guidance for their newly diagnosed AD patients and their caregivers.  Doctors who update their familiarity with internet sites even once a year for an hour or two to help their patients and caregivers would not be incurring an overly time-consuming burden. 

Following are sites that I have found most helpful in my role as an AD caregiver.  I visit some sites on a daily basis, some only occasionally, and some only when seeking specific information or the answer to a specific question.  Some sites automatically send daily or weekly updates to my email inbox.  Whereas other caregivers may suggest sites not listed here, this listing can certainly serve as a starting point for doctors who want to better inform both their patients and caregivers. 

- My favorite site for interacting with others in my situation … spouses of people with AD … is at www.thealzheimerspouse.com.  This site allows me to have a support group available to me on a multitude of distinct topics, 24/7.  The site is coordinated by Joan Gershman, a caregiver whose husband has AD (and diabetes and Parkinson’s).  The insight gained through Joan’s blog postings is justification enough to visit frequently.  However, in addition to the blogs, her site provides very comprehensive and helpful information just a click away.  The site’s message boards allow caregivers to post questions and receive answers from others dealing with similar issues.  Although I have been meeting weekly with fellow spouse caregivers for more than four years, I still check this website each day to read postings and comments.  I also start a new message board “thread” seeking the advice of other spouse caregivers when I want to know how others in my situation have handled a specific issue.  There is a lot of “collective wisdom” from other spouse caregivers on those message boards.  I can envision this site being most valuable for people not living in areas where they can participate in good weekly caregiver support groups.  In my opinion, this is simply the single best internet site for spouse caregivers!

- My favorite source for obtaining daily information about current research and newly released studies, as well as links to other helpful resources, is the Alzheimer’s Daily News which comes directly to my email inbox each day.  A publication of the Ageless Design Research Foundation, one can subscribe to this source by going to www.agelessdesign.com or to www.alznews.org.  Each newsletter has a brief description of a recently published study or other AD information with a link to follow up to read more if interested, as well as a link to a support group (that I do not participate in) and a store selling AD products.

- One can also sign up for a daily or weekly Alzheimer’s Newsletter reporting on recent research studies at www.medicalnewstoday.com.  I often find myself checking further on items in my daily/weekly newsletter from this source.  Often there will be the same news articles as in Alzheimer’s Daily News, but sometimes I find other news articles worthy of follow-up.

- The national websites of both the Alzheimer’s Association and Alzheimer’s Foundation of America have lots of helpful information and can refer one to local resources and support groups as well.  In fact, when I was dissatisfied with support groups available to me through the Alzheimer’s Association, my visit to the Alzheimer’s Foundation website led me to learn about LIAF, the Long Island Alzheimer’s Foundation where I found weekly support groups designed exclusively for spouse caregivers ... and support groups for those in early to moderate stages of AD for my wife to attend.  Each national site also maintains online support groups, but I have not found them anywhere near as helpful as the online support group at TheAlzheimerSpouse.com.  Go to www.alz.org for the Alzheimer’s Association website, or to www.alzfdn.org  for the Alzheimer’s Foundation of America website.

- USAgainstAlzheimers, sometimes referred to as USA2, is a national organization that engages in “public advocacy, federal relations, grassroots activity and voter relations” on behalf of those with AD and their caregivers.  They also have a Political Action Committee (PAC) to support legislators and legislation, an activist network, and an organizational network whose goal is to end Alzheimer’s by the year 2020. Their chairman and co-founder is a member of the National Alzheimer’s Project Act (NAPA) Advisory Council.  Their website also posts stories from caregivers and other helpful information, blogs, news, and activist information.  Go to www.usagainstalzheimer’s.com.

- the National Institute on Aging’s Alzheimer’s Disease Education and Referral Center (ADEAR) provides complete information on all AD clinical trials and all Alzheimer’s Disease Research Centers.  This is the government center for AD information can be accessed at www.nia.nih.gov/Alzheimers.  There is also a lot of AD information available from the National Institutes of Health.  Their site provides such helpful information on stages of AD, treatment options, clinical trials, etc. at www.nlm.nih.gov/medlineplus.  The most recent government site dealing with AD can now be found at www.alzheimer’s .gov.  For those whose loved ones have only recently been diagnosed, this seems to be an extremely comprehensive site that should be checked out for further information and links to other sites that will prove helpful.

- New York University’s Fisher Center for Alzheimer’s Research Foundation issues a monthly newsletter that one can sign up for at www.alzinfo.org.  This NYU site also has a link to “Clinical Stages of Alzheimer’s,” that I have found to be the single best timeline to clearly alert caregivers about what they should expect as their loved one declines through the early, moderate, and severe stages of AD.

- There is a great deal of AD information at www.mayoclinic.com, including valuable information about AD symptoms, stages, treatments, etc.  One can also sign up for their Alzheimer’s Caring Newsletter to come directly into one’s email inbox.  In addition, a Mayo Clinic health education outreach coordinator maintains an Alzheimer’s blog site that encourages caregiver to post comments.  This site is for all caregivers, not just for spouse caregivers.  For reasons that continue to mystify me, the site is incredibly difficult to locate from their main site and from their AD information pages.  But one can access the blog site by going directly to: www.mayoclinic.com/health/caregiving/MY00395/TAB=expertblog.

- The Johns Hopkins website has lots of helpful information similar to that which is found at the Mayo Clinic site.  They also issue a Health Alert on Memory that can go directly into your email inbox several times each month.  To access their information about causes, symptoms, treatment of AD, etc. one can go to their main website at www.hopkinsmedicine.org.  To sign up for their AD health alert newsletter, one can go to www.johnshopkinshealthalerts.com.

- The University of California, San Diego Alzheimer’s Disease Cooperative Study issues a monthly newsletter with information about recent research sponsored by the National Institute on Aging  (NIA).  In cooperation with the University of California, San Diego, their newsletter also has information on new AD clinical trials and ongoing AD research, as well as links to other helpful sites.  One can access all of this information by going to www.adcs.org.

- At the Alzheimer Research Forum, one can subscribe to a weekly newsletter about current research articles and studies.  Go to www.alzforum.org.

- One reliable information site for many health topics is “webmd” and one can sign up for their AD newsletters at www.webmd.com/alzheimers/news.

- A comprehensive site for all science topics is at www.sciencedaily.com.  This site provides the latest news is many different areas of science ... nature, engineering, etc. along with health topics.  One can sign up for their free AD newsletter to come directly into your inbox with the latest news about AD research.

- Information about helping the elderly with AD, along with message boards for posting comments (and a site looking to provide additional resources and help somewhere down the line) can be found at www.caring.com.

- A website coordinated by Cornell Medical College to help caregivers prepare a safe home environment for someone with Alzheimer’s can be found at www.ThisCaringHome.org.

- Another website that posts newspaper and journal articles dealing with major health issues is My Healthy Today.  You can sign up for their free monthly Alzheimer’s Disease newsletter to come directly into your inbox each month at www.myhealthytoday.com.

Finally, I would respectfully recommend that doctors take a look at my own website ... begun in August, 2013, at the specific request of several medical journal editors and national AD organizations ... www.allansvann.blogspot.com.  I would suggest that some doctors could learn something from my articles to gain the perspective of an AD caregiver, and may wish to also consider recommending my site to their patients and caregivers for more information.

1. A.S. Vann.  “Current Alzheimer’s Medications: Effective Treatments or Expensive Bottles of Hope?”  Journal of the American Medical Directors Association.  August, 2013, Vol. 14, No. 7, pp. 525-526.

A severely edited version of this article was published in Caring for the Ages, the monthly newsletter of the American Medical Directors Association.  January, 2014.  Vol. 15, No. 1, P. 11.  Online only.