Preparing a Parent With Dementia to Move to Assisted Living

I received an email yesterday from an out of town daughter wanting to know if discussing the move to Assisted Living with mom and discussing the fact she has Alzheimer's should be started even though a discussion about Alzheimer's has upset her in the past.

My response is this. A discussion such as this is not going to be easy and mom is going to be upset. I would never do it over the phone, but certainly as this is going to be a life changing event, you do need to remind her that she has an Alzheimer’s Related dementia disorder and your job as her power of attorney is to keep her safe. Actually, I am sure her mother already realizes her cognitive changes. I bet it already makes her nervous. This has got to be the most difficult time in her life and I am very sensitive to the family's needs as they undertake this challenge. I won’t pretend that it is going to be easy for the parent or the family members. But just keep in mind that persons with a diagnosis of dementia are protected such as young children are by the State. The authorities take their safety issues quite seriously and have enacted laws to ensure safety. Whether they are placed in a community setting, are cared for at home with 24 hour caregivers, or go to a nursing home when the decline is progressing, a parent should be made aware that because of wandering, cooking, and driving issues, they will no longer be able to live independently. Although a parent may get angry at you, or may get very emotional, I believe they should be told what the plans are and and why.

I have worked with other adult family members who have lied to their parents out of guilt,not having had warm relations in the past, or out of avoidance of this discussion. They have told a parent that it is only going to be a temporarily thing – much like going to camp for the summer while their condo is undergoing renovation. While that provides a sense of relief for the adult child, it is disastrous for the parent. This approach doesn’t serve a parent with dementia well because they will not forget what families have promised. When a couple of months go by and they are still living in assisted living, they get really angry and become belligerent with staff – ultimately needing to have private caregivers in addition to costs of providing care at the ALF. It doesn’t serve the parent and they feel betrayed. The one thing about Alzheimer’s I haven’t been able to figure out is why persons with this disease NEVER FORGET a memory that is tied to a great emotional experience!

Although this is an emotional experience, honesty is ultimately the best policy. Enlist the help of the facility you are considering. They have many years experience in this arena. Allow a parent to process the need for safety. Don’t use the word facility and do use the word "Community" instead. And if a parent refuses to move, then you may need to enlist the help of the courts through guardianship - always an expensive proposition.

As carer for my mother 13 years ago I also crossed this path and made the difficult choices for my mother's safety as she wandered and couldn't find her way back home one day. If any of you have gone through this journey and would like to share your comments, please do so by checking the comments link below.

At A Good Daughter offices we run a dementia support group free of charge for family caregivers on the 3rd Wednesday of every month between 5:30 pm and 7:30 pm. Please RSVP to olga@agooddaughter.com to sign up.

About Bonnie - The face of dementia

Max Wallack, A Remarkable Young Man

I just received a box with a donation of puzzles from "Puzzles To Remember", the brainchild of a young man whose great grandmother died of Alzheimer's in 2007.  As another person affected personally when my mother died with this disease in 2003, I understand how this disease changes caregivers forever.  Now, more on Max.......

Below is his mission, as posted on his website: http://www.puzzlestoremember.org/

"PUZZLES TO REMEMBER is a project that provides puzzles to nursing homes and other institutions that care for Alzheimer's patients.

WHY THIS APPROACH?

Other programs raise money for research, which is an important long-range goal. Our approach is to benefit Alzheimer's patients more immediately by providing activities that will bring them pleasure while also slowing down the progression of the disease. Instead of focusing on far-off goals, our approach will realize a more immediate benefit to today's patients.

Studies have shown that working puzzles is a form of mental activity that not only engages and stimulates Alzheimer's patients, it also slows down the progression of the disease and thus provides important salutary benefits.

This is very important for patients in the early stages of the disease, including those who have not yet been diagnosed. For these people, the working of puzzles and similar mental activities can significantly postpone the onset of symptoms or avoid these symptoms altogether. Painting and other forms of artistic and creative expression also have strong, beneficial effects, and often result in improvement in overall brain function."

All I know is that when these puzzles get distributed to our Alzheimer's clients, there will be a lot of very smiling faces because as I've learned, seniors love puzzles.  As a former Activities Director in a nursing home, I realized early on that puzzle-making is something cognitively impaired individuals can continue to work on and feel a sense of accomplishment when it's done!
 
To help Max in his continued pursuit of suppling these puzzles, you may go directly to the "DONATE" button at the top of his web page to make a contribution.  Or if you'd like to send a contribution of your new or gently used puzzles they would also be put to good use.  What a remarkable young man and what a great program!   http://puzzlestoremember.org/

What to do if you are ALF Shopping and a Parent Smokes

I have an Alzheimer's client whose caregiver informed me recently that she found 2 packs of cigarettes in the client's bedroom recently and that on occasion she smells cigarette smoke on arriving some mornings.  The family members are in the process of touring assisted living facilities for mom but don't know if they should divulge that information to the facilities they are touring.  Recently they informed me of a recent decline in activity that was noticed and it prompted me to address the smoking issue.   In realizing that this may be an issue with other family caregivers I'd like to share my experience in long term care administration and the regulations that govern these facilities.  I'd also like to invite any comments you may have.

On the smoking issue, Assisted Living Facilities are not mandated to accept a resident if they are a smoker. Nursing homes do, but Alf's adhere to different scrutiny by the Fire Administrative Code that dictates each incoming resident meet a capability assessment. If they admit a smoker it decreases their numbers which they of course want to keep high enough to pass the regulations. This is part of the reason you don’t see people in wheelchairs in a standard license ALF. Someone coming into the facility in a wheelchair puts them at greater liability with this assessment. If they admit a known smoker, they may require that the family hire a 24/7 caregiver to keep an eye on the resident to help prevent a smoker from setting the facility on fire.


What can you do? I would not withhold the information from facilities you will be touring. I encourage families discuss any reported smoking when touring to find out how each facility deals with this issue. Remember, residents will always find a way to get cigarettes from other visitors, staff, or other residents in exchange for money or other favors. You don’t want to know some of the bribes I’ve seen. Perhaps family members should enter into this discussion with their loved one as to why he/she is smoking, but I would reserve this conversation for any future visits. Perhaps if mom or dad really wants to live in an ALF in Florida, you can help the prospective resident understand that this will not be possible as a smoker.

And definitely, if your parent has a special relationship with his or her doctor, I would elicit the primary care provider's help with this.

What do you think? Have you had to face this issue with a family member?  Let me know your thoughts.

New Senior Scam Alert

This just in from the Centers for Medicare and Medicaid Services
26 Federal Plaza, Rm. 3811
New York, N.Y. 10278
phone: 212-616-2515
fax: 212-264-6189

Fraudsters are targeting seniors in Burlington, NC, Kalamazoo, MI, and possibly elsewhere through phone calls in an attempt to obtain their Medicare ID numbers. In Michigan, the callers, who identify themselves as being from E-Medicare, are offering new diabetes monitoring equipment.

Several seniors in North Carolina contacted the sheriff's department to report that they received phone calls with the caller offering free medication in exchange for their Medicare ID number.

Seniors should not provide their personal information to unsolicited callers and are encouraged to report suspicious calls.  Please inform those seniors whom you work with and your loved ones.

Gail Sheehy's New Book on Caregiving on the Diane Rehm Show

The Diane Rehm Show

More than 50 million Americans are caring for a spouse, parent or relative who has a serious illness. Author and journalist Gail Sheehy identifies eight crucial stages of caregiving, drawing on her experience caring for her husband, founder and editor of "New York" magazine Clay Felker.

As I frequently find, the act of caring for a family member very often changes the principal family caregiver forever.  In her book, "Passages in Caregiving - Turning Chaos into Confidence" Gail Sheehy very carefully advocates how to bring the entire family together early in the caregiving process -- before the crisis -- with a mediator to openly discuss and advocates sharing with siblings the myriad of duties necessary to care for a parent or a loved one at home for as long as possible. 

Gail Sheehy, the bestselling author of 16 books, including Passages, has changed the way millions of women and men around the world look at the stages of their lives. Now, she takes on the most challenging and personal issue as she tells the inspiring story of her own journey of 17 years caring for her husband and fills the book with stories of families who we can all relate to, and their most creative strategies.

In Gail Sheehy's interview with Diane Rehm of NPR Radio, she advocates that family members obtain the services of a Geriatric Care Manager whom she sees as an invaluable asset in organizing care in the household and following up in a crisis when family members are located out of town.  For more information on obtaining the services of a geriatric care manager go to the National Association of Professional Geriatric Care Managers.

To listen to this podcast go to:
http://thedianerehmshow.org/audio-player?nid=12462

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Every Day I Cry - Story Two in the Dementia Series

Mary was such a joy.  She became a client in 2007 when her out of town family realized she was having word finding problems, noticed when they spoke with her over the phone each week from Nevada.  I will never forget my first visit to her home and how amazed I was at her accomplishments as an artist!  Not only was she a joy to be around I was impressed with how humble and gracious a lady she was and her incessant drive to improve her memory and speech problems.  At one point she had me take her to a well known speech therapist in the community three times a week for "homework".  She was a diligent student and practiced doing her assignments without fail each week. 

Although, in the early stages of Alzheimer's, she lived in a community which supported her drive to exercise, play golf, swim, and continue painting.  My role was to assist her to live independently, follow up with periodic visits to her medical providers, check her medications management which she was still doing without help.  In my overall assessment, I could see she had a pretty good quality of life, helpful neighbors, and in no apparent danger except for a heart murmur for which she took medication. 

All was well in Mary's life until she ran to pickup the phone one day, fell and fractured a hip.  You know the rest, she had surgery and her family flew out to see her.  During her hospital stay, she expressed her desire to live longer than her mother's age at her death, 83.  But Mary surprised everyone and made a remarkable recovery with the rehabilitation process, going home in a couple of weeks with assistance.  Unfortunately, confusion and behavior problems set in while at home and she resisted the help of caregivers cooking, grooming, bill paying, and most of all driving.  She finally sold her car and traded it for a golf cart so that she could still go to the putting green.

But tragedy struck when her power of attorney arrived, cognizant of Mary's athleticism and worried that she just might outlive her resources.  This adult child discontinued her heart medication without dignity and placed her on hospice where her life suddenly stopped.  So much for Honor Thy Father and Thy Mother.  As this family member stated in a shocking email, she was a lot closer to her father anyway!  Mary died at age 85, sketching the above during an art session at a local memory day care center and she enriched my life.

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Every Day I Cry - Short Stories on Dementia Care

Alright I understand that I haven't been writing much lately I have often toyed with the idea of completing the book I once started -- once or twice.  Today, however, I feel compelled to pick up the pieces of a story I wish to tell and begin the process all over again.  You see, the impetus came from a visit I once had by a Palm Beach Sheriff's detective, investigating certain allegations against caregivers hired by a client.  I am not at liberty of using the actual names of those involved but I long to put pen to paper and perhaps by doing this, will release the vast emotions I feel as advocate to a client who was so horribly wronged by a family member, so here goes.

Whatever happened to the commandment, "Honor Thy Father and Thy Mother?"  Detective Allen arrived promptly at 1pm today.  We exchanged cards and sat for the interview regarding the allegations by Lisa concerning theft by her father's caregivers.  I answered her questions as to when I started to work with my clients, what my role was; questions about the care giving duties of the 2 girls in question.  She asked me about my client's mental capacity with respect to his ability to manage his financial affairs.  I explained that although he may have overpaid me once or twice and I immediately returned his check and he issued a new one, my client was keenly aware of his finances.  In fact as I explained to the detective, each month when I invoiced him, he paid only the dollar amount (never paid the cents) rounded down to the lower dollar amount especially when the change amount was over 50 cents. He always knew exactly what he was doing and enjoyed doing it. The detective laughed and said this was very telling as to his mental capacity.  Although I am not a suspect, I was asked the last time I saw my clients and I was happy to explain the circumstances that led to my resignation and why.  You must understand this was not meant to be a witch hunt I was just interested in telling the truth as documented in my notes - and I keep very detailed notes. As a former nursing home administrator, I was trained to believe that "if you don't write it, it didn't happen".

There, I blurted it out,  "I don't believe the girls stole anything from my client".  I explained what I observed on a visit to the bank with my client that last day.  I was asked where the caregiver was at the time, and I said: "The caregiver sat in the waiting room while my client spoke with the manager in a cubicle". 
I explained that the daughter phoned and had been abrasive with the branch manager and how the operations manager had to get involved.  I explained how much money my client was disbursed in cash.  I explained how he reimbursed the caregiver some money she had laid out at the grocery store, and watched as he put the rest in two bank envelopes, placing them in his pocket. I explained how I got the call later that night at 6pm from my client (who was getting a treatment) stating he wanted me to pick him up and to take him home because his daughter was "out of her mind and fired his girls".

Why was I being asked if he had called me on his cell phone or another line?  After all I was not a suspect or one of the accused.  I explained: "He used his cell phone". I explained what happened when we returned to the apartment and how this family member abused me and both her parents.  I explained how she completely wiped out my client's contact list from his phone and what was said when I objected to this action.  But the one thing I will never forget is how my client's wife who had dementia, cried when she heard the girls had been removed from the home.  She shouted: "I want my parent, please bring me my parents!"  It was so hurtful to know that these women - caregivers, who had lovingly cared for this regal lady, taking care of all of her personal needs, were seen by her as her parents. 

I remarked to the sheriff how after my client went to bed, the daughter went through her dad's locked desk drawer, removing all financial contents: credit cards, checks, remaining cash (from the banking transaction), keys to the car.  I told her that I refused to leave the home until the daughter left.  We left together at 9:30 pm.

To my relief and amazement, the detective said the daughter would now be investigated because of her direct access to her parent's assets and how some adult children with power of attorney mistakenly think they have complete control over their parent's decision making before declaring them incapacitated in a court of law.  I explained how after I witnessed her remove the $7000 from her father’s desk drawer, she then blamed another caregiver of having taken the money in front of her father that same weekend.  The PBSO detective then made the usual statement -- to contact him if something was remembered later that I may have forgotten, and left.  All in a day's work of the care manager!

To be continued.......