Personal Blog #19 ... Ten Steps to Take When the Diagnosis is Alzheimer's ... 12/18/20

Yesterday I made a zoom presentation to caregivers and as part of my presentation I updated my previous list of important steps to take once a loved one is diagnosed with Alzheimer's disease (AD) or some other form of dementia.  Here is that updated list of Ten Steps to Take: 

1. Take away the car keys.  Before your loved one injures him/herself, or causes an accident that injures someone else or causes vehicle or property damage, you should take away the car keys.  This is often a very difficult and emotionally strained decision, but it is a decision that must be made.  Whereas it is true that some people diagnosed with dementia can continue to drive safely for quite some time, the issue is that there will be a time when your loved one will not be able to drive safely … and no one can predict just when that time will come.  So … better to take away the car keys before your loved one accidentally causes injury or property damage … or becomes lost and forgets how to call for help.

2. Meet with an eldercare attorney.  The attorney will review and/or prepare necessary end-of-life documents ... wills or trusts, living wills, health care proxies, and durable power of attorney.  You should also discuss long-term health care options with your attorney.  If you have long-term health care policies, review the provisions together.  Also, ask the attorney to review your current financial situation to determine if any assets in your loved one's name, or in joint/custodial ownership, should be moved solely to your name.

3. Meet with a certified financial advisor.  You and your financial advisor should discuss how to preserve, protect and grow your current income, investments, and other assets …  while also discussing plans for how you will pay for long-term care.  You should also discuss long-term care insurance options with your financial advisor to see if your advisor can be helpful in securing some options for you.

4. Discuss long-term care options.  Does your loved one prefer to stay at home for as long as possible, or prefer to be in a residential facility?  What do you prefer?  What will you do if no longer able to care for your loved one at home by yourself?  If not discussed previously and your loved one still has moments of clarity, now is the time to have these discussions with your loved one.  You should also try to leave yourself sufficient time to visit and check out various facilities in advance, and/or check out home health aide providers.  All facilities and providers are not the same, and you’ll need to do your homework.  There is a lot of helpful information on the NYS Department of Health website … www.health.ny.gov   

 

As you check out different facilities, you will learn that many facilities with Alzheimer’s patients are filled 100% of the time, so you will probably need to place your name on a waiting list.  At some facilities, if you do not place your loved one immediately when notified that a bed is available, your name will go back to the bottom of their wait list.  In other facilities, you can “pass” when notified but still remain at the top of their wait list.  There are a few different types of assisted living facilities, and there are also memory care facilities in which all residents have dementia or memory issues.  Similarly, home health care providers often charge different amounts depending on hours per day or per shift, holidays, meal requirements, etc.  So, if at all possible, leave yourself time to check out your various long-term care options well before you’ll need to make those decisions.

 

5. Learn about Alzheimer’s and other forms of Dementia at responsible websites.

 

The Mayo Clinic has excellent information.  Access at https://www.mayoclinic.org/diseases-conditions/alzheimers-disease/symptoms-causes/syc-20350447

 

Johns Hopkins also has excellent information.  Access at https://www.hopkinsmedicine.org/health/conditions-and-diseases/alzheimers-disease

 

Major organizations such as the Alzheimer’s Association … access at www.alz.org …  also provide lots of helpful information.

 

There is also a wealth of excellent information at government sites sponsored by the National Institute on Aging and the National Institutes of Health.  Access at https://www.nia.nih.gov/health/alzheimers

 

Educate yourself about the stages of Alzheimer’s so you will have knowledge about what to expect.  The best presentation of the clinical stages of AD that I have found is the one provided by the Fisher Center for Alzheimer’s Research Foundation, a division of The Rockefeller University.  Access at https://www.alzinfo.org/understand-alzheimers/clinical-stages-of-alzheimers/

 

And don’t forget about local organizations here on Long Island.  My favorite is LIAD, the Long Island Alzheimer’s and Dementia Center (formerly known as LIAF, the Long Island Alzheimer’s Foundation which had been based in Port Washington).  At LIAD’s home offices …1025 Old Country Road in Westbury … 516-767-6856 … there are day care programs, support groups, and other services.  LIAD also has satellite branches in both Nassau and Suffolk.  LIAD can be accessed at https://www.lidementia.org/

 

6.  Locate day care options – Social day care programs are a win-win for loved ones and their caregivers, particularly when loved ones are in early to moderate stages of dementia.  The person with AD/dementia can engage socially with others who are also dealing with similar issues while having an opportunity to sing, dance, play games, etc. … and, while your loved one is engaged, you can enjoy several hours of respite time.  LIAD provides such programs, as do other organizations such as Ys, JCCs, town senior citizen departments, adult homes for seniors, and even some assisted living/nursing home facilities.

7. Join a good caregiver support group.  Try to find a group that meets solely for caregivers in your position ... for example, just for spouses, or just for children caring for their parents.  Such groups can focus more sharply on common issues.  But if you cannot find such a group, joining a mixed group is better than no group at all.  Try to find a support group meeting at least twice a month … but if such groups are unavailable, joining a group meeting only once a month is better than joining no group at all.  You will learn many helpful tips in a good support group, learning strategies from other caregivers who also “get it” ... other caregivers who truly can appreciate and understand what you are experiencing.  The emotional support from fellow caregivers can also be very helpful.  I personally learned more helpful information from other caregivers in my support group than I learned from all the articles and books I read about AD.

8.  Check out websites maintained by other caregivers.  One or more of the many online caregiver sites may provide you with just the support and guidance you are looking for.  I sought out a few dozen websites just by doing a Google search, and found a few to be very helpful.  I also maintain a website to help other caregivers.  I began my website in 2013 at the recommendation of a medical journal editor.  I have information about my own personal journey, and I post copies of my published articles.  To date I have had more than 100 articles published in peer reviewed medical journals, major newspapers, caregiver magazines, and on organization websites.  I also post occasional personal blogs that I do not send out for publication anywhere else … I simply post them on my website.

 

I don’t promote my personal website with advertising, but 1000-1500 visitors come to my site every month to read my articles.  My point is that you can learn a lot from people who have already experienced what you are now experiencing or soon may be experiencing.  If you’d like to check out my website, it can be accessed at www.allansvann.blogspot.com.  On my site you can even see a few minutes of a CBS Evening News interview with Clare and me!

 

9. Travel with your loved one now … while you still can.  At my first spouse support group meeting, I mentioned that Clare and I had traveled a lot and had already placed a deposit on a trip to Australia that we had planned to take in 12 months.  A wise woman whispered to me on the way out, “Allan ... don’t wait to take that trip.  Your wife may not be able to travel a year from now.”  That night I booked a different trip that we took a few months later ... and that turned out to be our last major trip.  Due to Clare’s worsening condition, I had to get our deposit back on that planned trip to Australia.  If you have planned to take any trips with your loved one in the future, please don’t wait too long.  Take those trips now or in the next few months … or, given that I am writing this at a peak time of Covid infections, once it is safe to travel again … because your loved one may not be able to travel a year from now.

 

10.  Check for possible free respite opportunities for yourself

Road Scholar (http://www.roadscholar.org) is the nation's largest not-for-profit educational travel organization. In 2015, Road Scholar created The Caregiver Grant (access information at: https://www.roadscholar.org/about/financial-assistance/caregiver-grants) to provide respite time for family caregivers by providing grants of up to $1500 to help offset costs of an educational travel experience.  Individuals 50 and older living in the United States and currently serving as caregivers ... or caregivers who have lost loved ones within the past two years ... are eligible to apply for a grant, regardless of whether the loved one is receiving or had received home care, adult day care, hospice care, memory care, nursing home care, visiting nurses, or comparable or related services. 

Caregiver Grant recipients are responsible for their own transportation to and from their travel destination, but Road Scholar will cover all other costs ... accommodations, meals, taxes, gratuities, a travel protection plan, and any fees for lectures and activities up to that $1500 amount.  Specific information about Road Scholar caregiver grants, including application forms, may be found on their website.

 

 

Reducing COVID Deaths in Assisted Living Residences and Nursing Homes

The high death rates in Assisted Living Residences (ALRs) and Nursing Homes (NHs), especially in New York, have been attributed by some to positive COVID test results among staff who then infect residents.¹   To whatever degree that may be true, the advanced age and underlying conditions of so many people in ALRs and NHs make such facilities high risk for negative COVID outcomes.²   Even with such high risks, however, some families have little choice but to place or keep their loved ones in ALRs and NHs. 

As a former Alzheimer disease spouse caregiver who visited my late wife for nearly 3 years in dementia units of an ALR and NH, I believe that there are actions that can be taken now to possibly reduce COVID deaths in such facilities.  I would recommend that these 4 factors be looked at more closely:

Availability of Medical Staff

In NY, there is a minimal requirement for the presence of physicians in NHs. According to the New York State Department of Health, Nursing Homes in New York State, “The frequency of (attending physician) visits shall be no less often than once every 30 days for the first 90 days after admission, and at least once every 60 days thereafter.” ³   This is simply not acceptable!  My wife’s ALR had 2 “visiting” doctors who each came onsite for about 3-4 hours every week, but often did not see my wife during their visits unless I specifically requested that she be seen. My wife’s NH had one doctor “on call” for its 300 residents and was so busy that numerous requests to meet with him were unsuccessful.   

To provide better medical care to residents, especially during this pandemic, ALRs and NHs must have well trained doctors available onsite, and more often.  As soon as possible COVID symptoms are detected, decisions should be made on either immediate treatment in that facility, or hospitalization.  Delays due to time are unacceptable, but only if a doctor is onsite will time delays be avoided.

Quality, Training, and Supervision of Non-Medical Staff

Whereas there are many highly dedicated and caring people working in these facilities, too many staff members are simply not given proper training, and too many are simply not dedicated or caring.  Aides are often paid at, or barely above, minimum wage.  According to the Paraprofessional Healthcare Institute, its latest available data from 2016 indicated that “nurse aides, who provide most of the direct care in nursing facilities, earn near-poverty wages.” ⁴  To attract more highly qualified people, salaries must be increased immediately—especially given the risks that aides are taking each day during this pandemic by being in such close contact with residents. 

Supervisors must provide, or arrange for others to provide, adequate orientation and training for every aide.  Supervisors, often underpaid—between $29,000 -$38,000—also need more training.⁵ Based upon my observations on an almost daily basis, too many supervisors remain closeted in their offices instead of being out on the floor directly observing and supervising aides interacting with residents.

Well-trained aides and supervisors who recognize the earliest signs of possible COVID can alert doctors onsite and may help prevent some deaths.

Testing and Personal Protective Equipment (PPE)

There must be better testing capabilities, PPE, and frequent COVID testing with results available within hours so personnel testing positive can be sent home immediately before infecting others. That is a recognized “given,” but ALRs and NHs need better plans in place to immediately replace absent staff.  Residents already often lack proper attention due to shorthanded staffing on many days.⁶ With higher salaries, more people might be willing to become “substitute emergency aides.”  However, before being placed on any substitute list, aides must also receive proper orientation and training.  Shorthanded staffing increases the chances of staff not recognizing the earliest signs of COVID in residents. 

State Supervision Responsibilities

When my wife was admitted to her NH, I was told the regular visiting hours.  However, I should have been told that state and federal law allow a spouse to visit anytime.  When I learned about this legal right, I contacted the NYS Department of Health and was told that all NHs in NY are in full compliance with this law.  But that was not true.  I went to the DOH website listing of about 630 NHs throughout the state, and I called every 10^th NH on that list to ask about their visitation policies.  Of the 63 NHs I contacted, only 24 indicated that spouses can visit anytime.  Sadly, 39 of the 63 NHs indicated that spouses can only come during regular posted visiting hours, which was not in compliance with state and federal law.⁷

Admittedly, I did this survey in 2016, 4 years before Covid played havoc with all NH visitation policies.  However, my point remains valid … whatever new state laws or mandates arise to make ALRs and NHs safer for residents, unless the state DOH exercises better supervision with frequent (and, I would suggest, unannounced) onsite inspections, meaningful change may not happen.

One Last Point

For as long as this pandemic is with us, facilities must find ways to designate safe areas where visitors can briefly meet with residents.  One way to make this happen is to construct a temporary “safe corridor,” either within the facility or in a “tent-like” open or enclosed attachment to the facility.  A safe corridor would enable visitors to enter, meet with residents, and leave without being in contact with others. 

I cannot even imagine the pain of ALR and NH residents, and their families, who have been unable to visit with each other during these past many months.  The pain of residents dying such lonely deaths is not something that should be allowed to continue.  ALR and NH visitor restriction policies must be changed immediately.

Dr Vann has written frequently for caregiver magazines, other medical journals, and major newspapers. After his late wife, Clare, was diagnosed with early onset Alzheimer disease, Dr Vann made it a point to increase public awareness of Alzheimer and to help fellow caregivers. 

References:

 

1.     New York State Department of Health. Data Indicates COVID-19 Was Introduced into Nursing Homes by Infected Staff. July 6, 2020. https://www.health.ny.gov/press/releases/2020/2020-07-06_covid19_nursing_home_report.htm.

2.     The New York Times. More than 40% of U.S. Coronavirus Deaths Are Linked to Nursing Homes. Updated on August 13, 2020.  https://www.nytimes.com/interactive/2020/us/coronavirus-nursing-homes.html.

3.     New York State Department of Health, Nursing Homes in New York State.  Role of the Attending Physician in the Nursing Home. 2011;(pages 4-5). https://www.health.ny.gov/facilities/nursing/all_services.htm.  

4.     Elder Law Answers. How Low Nursing Home Wages Are Contributing to the Spread of Covid-19.  April 12, 2020.  https://www.elderlawanswers.com/how-low-nursing-home-wages-are-contributing-to-the-spread-of-covid-19-17702.  

5.     Salary. How Much Does a Residential Supervisor Make in the United States? May 28, 2020. https://www.salary.com/research/salary/benchmark/residential-living-supervisor-salary. 

6.     Reuters. Special Report: Pandemic Exposes Systemic Staffing Problems at U.S. Nursing Homes. June 10, 2020. https://www.reuters.com/article/us-health-coronavirus-nursinghomes-speci/special-report-pandemic-exposes-systemic-staffing-problems-at-u-s-nursing-homes-idUSKBN23H1L9.  

7.     Annals of Long-Term Care. Is Your NH Visitation Policy in Compliance with Federal Law? [blog].  May 9, 2017. https://www.managedhealthcareconnect.com/blog/your-nh-visitation-policy-compliance-federal-law.

Published in Annals of Long-Term Care, October 1, 2020.  Access online only at:

https://www.managedhealthcareconnect.com/content/reducing-covid-deaths-assisted-living-residences-and-nursing-homes

Personal Blog #18 … Federal Grant Funded to Improve Care for AD/Dementia Patients in Hospital Emergency Departments! ... 9/17/2020

Readers who visit this site may recall reading Personal Blog #13, “Dementia Patients in Hospital Emergency Departments,” posted on 1/18/20.  In that blog I wrote about how patients diagnosed with Alzheimer’s disease (AD) or some other form of dementia are often treated poorly in hospital emergency departments (EDs).

Quoting from that blog, I discussed how I had read about “the American Geriatrics Society’s formation of the Geriatrics Emergency Department Collaborative (GEDC), a consortium of some of our country’s leading health systems and medical societies, to help improve emergency care for our nation’s older adults.”  The GEDC consortium submitted a grant proposal to NIA/NIH in late January of this year.  Their Geriatric Emergency care Applied Research (GEAR 2.0) grant called for establishing a Task Force to suggest ways to improve care for AD/dementia patients in hospital EDs

I was honored when the GERD consortium asked me to serve as their only non-medical Task Force member … as their “expert in patient-centered dementia care in times of emergency.”  If this grant were funded, as a former AD spouse caregiver I would be able to provide a voice for AD/dementia caregivers and their loved ones, able to describe firsthand what it is like for AD/dementia patients and caregivers in hospital EDs.  

In that same blog, I also requested readers to email me and share their own hospital emergency department experiences with their loved ones.  I said that I would like to include their comments and suggestions in my recommendations to the Task Force should the grant be funded.  Several caregivers did email me, and I am thankful for all of comments received.

Now I can update readers on this GEDC grant proposal.  Quoting from an email received earlier this week from one of the project coordinators … “The Geriatric Emergency care Applied Research network 2.0 – Advancing Dementia Care (GEAR 2.0 – ADC) is funded!!!  We received the notice of award from the National Institute on Aging today.”  Continuing to quote from that email, “During the first phase of the grant period (R61), we will establish a stakeholder engagement approach to determine research priorities for ED patients with dementia (PwD) and caregivers using a consensus process in four domains: 1. ED practices 2. ED care transitions 3. Detection, and 4. Communication and decision making.  We will also establish infrastructure and collaborations that include the GEDC, ADRCs, and GEAR 2.0 Cores: 1. Administrative; 2. Research; 3. Data/Informatics; and 4. Dissemination & Implementation.

The second phase of the grant period (R33) will solicit, review, select and fund research that will lead to future full-scale proposals addressing research gaps in emergency care for PwD and their caregivers identified during the first phase. This will create a platform from which GEAR 2.0 ADC and future investigators will generate preliminary data for large-scale funding opportunities, including multicenter project proposals. This “priming” of the research pipeline will promote further transdisciplinary studies and science and lay the groundwork for a sustainable research network infrastructure to support development of an evidence base to optimize the emergency care of persons with dementia.”

This is a very important first step in a new national effort to improve care for people with Alzheimer’s and other forms of dementia in hospital Emergency Departments.  Improved care for people with AD/dementia will also greatly relieve some of the stress and anxiety faced by caregivers, who often have to watch their loved ones receiving suboptimal care by many ED medical professionals who lack either the understanding and/or training to be able to communicate, diagnose and treat AD/dementia patients effectively.  Hopefully, research emerging from this grant proposal will lead to improved practices to enable more doctors to provide optimal care going forward.

I had another article about this same topic, care for those with AD/dementia in hospital EDs, published and posted on this site just a few months ago ... “When to Choose the Infant Approach,” which appeared in Emergency Physicians Monthly in June.  With increasing numbers of people being diagnosed with AD and other forms of dementia, hospital ED visits will continue to increase.  Medical personnel working in hospital Emergency Departments simply must learn how to communicate with, diagnose, and treat patients with AD/dementia more effectively.  As this Task Force’s lone AD/dementia patient advocate, I will now be able to provide a caregiver’s perspective on these important issues.  But I am again asking for your help.

If any current or former AD/dementia caregivers want to offer their recommendations, or simply want to share their hospital experiences with their loved ones, please email me at acvann@optonline.net.  Thank you.

 

When to Choose the Infant Approach

Alzheimer’s and dementia patients might respond better to simpler strategies.

The Geriatric Emergency Department Collaborative (GEDC) (https://gedcollaborative.com/about/) and the Geriatric Emergency Department Accreditation Program (GEDA) (https://www.acep.org/geda/) are two major national efforts to help Emergency Departments provide better care for all geriatric patients, including those with Alzheimer’s disease (AD) and other forms of dementia.

While these initiatives are very positive steps, it will take many years before most hospitals implement GEDC and/or GEDA protocols.

There are two changes in medical practice that can be implemented immediately in most if not all hospital EDs that would greatly improve care for patients with Alzheimer’s or other forms of dementia.  I have given a lot of thought to this recommendation, which is based upon my own years of experience as an AD spouse caregiver, and years of interaction with many other AD caregivers.

My first recommendation is to train all ED clinicians to approach patients in late stages of AD/other forms of dementia as they already approach infant patients.  I probably should have realized that years ago, but it didn’t occur to me until I recently watched a TV program in which a mother brought her infant into a hospital ED.

Physicians appropriately peppered the mother with questions seeking helpful information, knowing that parents can often provide an accurate health history, medications and events around the reason for presentation.  Asking parents for such information is standard medical practice, not just in a TV show, but also in the real world.

Yet this TV scene contrasted sharply with my experiences whenever my wife, in late stages of AD, presented to an ED.  Even though her level of cognition and verbal communication was comparable to that of the child in the aforementioned TV episode, Emergency medicine physicians routinely acted dismissively towards me, even asking me on more than one occasion to “please wait outside” while they examined my wife.

After watching that TV program I am now firmly convinced that we need to train emergency physicians to approach AD/dementia patients as they do infant patients.  A physician would never ask an infant to describe the type of pain he/she is feeling, or to describe exactly where it hurts, or for how long that pain has persisted, or to describe the pain intensity on a scale of 1 to 10.

Yet EM physicians asked my wife these questions when she was in late stages of AD.  They asked questions that my wife could not possibly understand, let alone answer, and were unwilling to let me provide them with helpful information.

EM physicians should know better, especially after my wife couldn’t respond coherently to questions about her name, or date of birth, or where she lives or her location.  Physicians should have realized that asking additional questions about her pain or why she was brought to the ED would be fruitless.  They should have wanted to listen to what I could say to possibly help them diagnose and treat my wife effectively.  But this never happened when my wife was brought into the ED … not even once.

I am not just speaking of my own personal experiences.  As a former member of an AD spouse support group, a former facilitator of two AD spouse support groups for the Alzheimer’s Association, and as the recipient of many emails in response to articles I’ve written about AD, caregivers repeatedly tell me that they felt that EM physicians did not want input from them even while these physicians seemed lost about how to communicate with their loved ones.

Attempts to communicate with late stage AD/dementia patients will be no more successful than attempts to communicate with infants.  EM physicians should seek helpful information from caregivers of their AD/dementia patients in the same way they seek helpful information from parents of infants.

A second step to immediately improve medical care for AD/dementia patients is to require all EDs to have at least one physician and nurse on each shift that has received specific training in techniques to communicate effectively with AD/dementia patients.  This step is especially important for those times when caregivers of these AD/dementia patients are not present.

Granted, implementation of this step would be very costly, and possibly even impossible in some settings, such as in small rural hospitals.  If so, then this staffing recommendation can be viewed as an aspirational goal by those hospital EDs where it just can’t happen.

However, those hospitals can still seek new ways to communicate more effectively with AD/dementia patients.  Just as COVID-19 is now changing the ways some doctors treat patients at home, perhaps ED doctors can use technology to communicate with knowledgeable doctors in other hospital EDs who can advise them how to more effectively communicate with their AD/dementia patients.

Our country’s aging population, with its growing number of people diagnosed with AD and other forms of dementia, suggest increasing numbers of hospital ED visits by AD/dementia patients in coming years.  EDs are scary enough for late stage AD/dementia patients … strange faces, unfamiliar surroundings, bright lights, loud sounds, hard gurneys, painful needles and IV infusions, and all the rest.

We can at least consider new proposals to allow EM physicians and nurses to communicate more effectively with their AD/dementia patients and caregivers.

If these two steps were eventually implemented, care for late stage AD/dementia patients in EDs would improve dramatically.

Even if implementation of that second step will take more time, let’s at least immediately start training doctors to view AD/dementia patients and their caregivers as they already view infants and their parents, while continuing trying to incorporate the broader elements of the GEDC and GEDA initiatives.

ALLAN S. VANN

Dr. Vann is a retired public school principal and a former Alzheimer’s spouse caregiver for 10 years. Dr. Vann writes frequently for publication to try to improve the diagnosis and treatment of people with Alzheimer’s.

Published on June 1, 2020 in Emergency Physician's Monthly.  Access at: https://epmonthly.com/article/when-to-choose-the-infant-approach/

Personal Blog #17 … Caregiver Emotions and COVID-19 … 6/3/20

I recently posted a Personal Blog discussing my personal anxieties and stress due to COVID-19 … stress and anxieties felt by a former caregiver who has struggled for more than 3 years before I was able to start enjoying life again as an AD widower.  Much of my newly found happiness came to a screeching halt when this coronavirus hit.  But as stressful as this period has been and continues to be for me as a former AD spouse caregiver, I can fully appreciate how much more stressful it must be for those who are AD caregivers now.

Until COVID-19, many caregivers relied upon dropping off loved ones at facilities for socialization and activities to allow themselves some respite time.  Until COVID-19, many caregivers took their loved ones with them to go shopping, to beaches, gyms, restaurants, movie theaters and other places … even if such activities were also stressful … simply to get out of their houses for a change of scenery and, at times, for some minimal respite time.  Until COVID-19, many caregivers were either in the process of placing loved ones in assisted living or nursing home facilities, already visiting loved ones in such facilities, or thinking about moving loved ones from assisted living placements into nursing homes.

I experienced a wide range of emotions as an AD spouse caregiver and am sure that many current caregivers have experienced or are experiencing many of these same emotions now.  I addressed these emotions in the first 10 articles I wrote when I was a contributor to The Huffington Post several years ago, and am re-listing the titles of those 10 articles here to encourage readers to go to my Huffington Post archive site to read them if you think they may be helpful.  Many caregivers do not belong to support groups … and many caregivers do not share their feelings even if they do belong … but sometimes it can be comforting for caregivers to know that they are not “the only one” or “crazy” or a “bad person” to feel the way they do.  Sometimes, it is comforting just to know that other caregivers experience these same feelings.

Here are the titles of the first 10 of my 35 articles published in The Huffington Post:

6/04/15 … Reflections of an Alzheimer’s Spouse

6/10/15 … Reflections of an Alzheimer’s Spouse ... Acceptance

           

6/17-15 … Reflections of an Alzheimer’s Spouse ... Affection and Love

         

6/24/15 … Reflections of an Alzheimer’s Spouse ... Anger

         

7/01/15 … Reflections of an Alzheimer’s Spouse: Anxiety and Depression

7/07/15 … Reflections of an Alzheimer’s Spouse: Doubt and Guilt

7/16/15 … Reflections of an Alzheimer’s Spouse: Frustration

7/22/15 … Reflections of an Alzheimer’s Spouse: Loneliness, and Sadness

7/29/15 ... Reflections of an Alzheimer’s Spouse: Stress and Grief

8/04/15 ... Reflections of an Alzheimer’s Spouse: Caregiver Comments

You will find a complete listing of all my Huffington Post articles published between June of 2015 through December of 2016 on this website’s “My Published Articles” page.  All 35 of my Huffington Post articles, including the 10 titles listed above, may be read on my Huffington Post archive site at https://www.huffpost.com/author/acvann-498.

Personal Blog # 16 … COVID-19 Decisions for Caregivers With Loved Ones in Assisted Living Facilities and Nursing Homes … 5/16/20

As stressful as this “new normal” has been for me as a former Alzheimer’s disease (AD) spouse caregiver who recently moved on with his life, I can only imagine how much more stressful it is for those who are caregivers now … especially for those whose loved ones are in in long-term care facilities.  Most Assisted Living Facilities (ALFs) and Nursing Homes (NHs) now prohibit visitors due to this pandemic.  That restriction alone would have caused me enormous additional stress, anger, and sadness. 

Should caregivers leave their loved ones in ALFs or NHs, or bring them home?  My wife’s worsening medical conditions eventually necessitated a transfer from her ALF to a NH, and many caregivers are probably considering a similar transfer for their loved ones this year.  I cannot say for sure what I would have done had COVID-19 been around when I made my decision, but sharing factors that would have influenced my decisions may be helpful for caregivers facing these questions today.

Should you leave your loved ones in ALFs … or should you bring them home?  It was a difficult decision to place my wife in an ALF.  When we retired, we both made the decision that if either of us would be unable to care properly for the other, we would place that person in an ALF or NH instead of hiring home health aides.  We then took out long-term health care insurance policies to help us do that in such an eventuality.  So, unlike most caregivers considering ALF or NH placements for their loved ones, money was not a factor for me.  As my wife’s AD worsened to where I felt she would receive better care in an ALF, I made the decision to place her and did not look back. 

My wife entered her ALF in 2013.  If COVID-19 had been around and I was prohibited from visiting, and if there were rising death rates in my wife’s facility, I think I would have brought her home. Although neither of us wanted this, and even though my long-term health care policy would not have covered those costs, I think I would have brought her home and hired personal live-in help.  Why? 

As stressful as it would have been to have home health aides living in my house for so many hours each day, the aides would have enabled me to still have some respite time for myself while also having responsibility for supervising my wife’s Activities of Daily Living (ADLs).  I would have let the aide supervise her daily hygiene, dressing, eating, medications, etc. … but I would have been able to hold her tightly, kiss her, talk to her, and tell her I loved her just as I did when visiting her in the ALF. 

I think I would have wanted to maintain that emotional and physical connection with my wife for as long as possible.  I am not saying that would be the best decision for all caregivers, but I think that would have been the best decision for me.  My wife was no longer actively participating in or enjoying activities at her ALF, and I cannot imagine her suffering more as a result of a decision to take her home.  Taking her home would have added to my stress, for sure, but I think that I would have been even more stressed if I had been unable to visit her and worried about her dying of COVID-19. 

So, were my wife in an ALF now, I am pretty sure that I would have brought her home.

However, whereas that decision would have been best for me and my loved one, other caregivers must make their own decisions as to what is best for themselves and their loved ones.  Resources to pay for either ALF placements or home health aides are certainly important factors to consider, as well as the age and medical condition of your loved one. The caregiver’s quality of life issues must also be considered. 

The most important influential factor may be the relationship you currently have, and once had, with your loved one.  My loved one was my wife of nearly 50 years whom I loved beyond words.  Would I have made the same decisions were that loved one my brother or sister, father or mother, in-law, or close friend who had given me power of attorney to make those decisions?  I cannot answer that question.  I just don’t know. I do know that it was extremely important for me to maintain my emotional and physical bonds with my wife for as long as possible.

What if I knew that visiting restrictions would soon be lifted because the worst of this virus had passed?  Would I have then decided to leave my wife in her ALF, hoping that she would remain well while knowing that I could start visiting again and in just a few more days or weeks?  Even given that scenario, I think that I still would have brought her home. 

Is it best to transfer loved ones from an ALF to a NH now … or should you bring them home?  When my wife was no longer able to participate in ALF activities, when I was paying for more and more hours for personal 1:1 aides, and when she was experiencing more medical issues, I decided to transfer Clare from her ALF to a NH.  An interim period of hospitalization facilitated the transfer and she was discharged from the hospital directly into a NH.  But given the data we now see about deaths in NHs around the country, and especially in NY, I would not have transferred my wife to a NH … nor would I have had her transferred back to her ALF.  I would have brought her home.

Given my strong need to see her, hug her, and kiss her … and talk to her even though I could no longer talk with her … I would have brought my wife home when discharged from the hospital.  I would have paid for home visits by nurses and therapists, taken her to doctors when necessary, and paid for  personal aides at home rather than be unable to visit her in a NH … and worry about her dying due to COVID-19.  But, as noted earlier, this is a decision I made for a loved one who was my wife.  Were my loved one someone other than my wife, I cannot say what decision I would have made because, if for no other reason, my emotional and physical bonds with my wife were infinitely stronger than with anyone else in my life.

So … what is my advice to caregivers facing these extremely difficult, stressful and painful decisions, made even more difficult, stressful, and painful due to this pandemic?  I can only speak for myself, and at this time I personally would not want my wife to be in an ALF or NH with a high death rate, with or without visitor restrictions.  That may not be the “right” decision for you … but that would have probably been the right decision for me.

 

ALF and NH placements are already difficult decisions, now made even more difficult during this pandemic.  All caregivers must come to these highly personal decisions by themselves, and what is “right” for one caregiver may be “wrong” for another caregiver.  Unless someone else is in your shoes … and no one else is … no matter how critical others may be if your decision is not to their liking, no one else can fully appreciate whatever factors weigh most heavily in any decision you reach.

   

Knowing that there is no one “right” decision for all caregivers, my advice is simply this:  Do what you think is best for you and your loved one.  Whatever you decide to do … or not do … is the “right” decision.

Personal Blog #15 ... Avoiding Sadness and Depression While Coping With COVID-19 ... 4/19/20

Like everyone else in this country … not just those currently dealing with Alzheimer’s disease (AD) as a caregiver, or those now trying to move on as AD widows or widowers … I am struggling to deal with COVID-19 guidance to remain at home.  Here on Long Island, NY … a current “hot spot” for this disease …I have already self-isolated at home for 3+ weeks, but I’m afraid that, at least in NY, self-isolation may continue well into May.

We have many heroes here on Long Island… doctors, nurses, and everyone else in the health care profession … first responders continuing to do their jobs each day … all the people performing essential services to transport food and stock grocery store shelves, deliver online packages, make hospital masks … and the many, many people helping others in need through their essential work or charitable contributions and activities.  All of these “ordinary people” are genuine heroes.

I am not one of those heroes.  I am simply a 73 year old Alzheimer’s widower trying to do my part to help my fellow Americans, staying home so I don’t unintentionally contract this coronavirus and get sick myself …or worse, become infected and spread COVID-19 to others.  Doing either would unnecessarily add further stress to our health care services and facilities, and possibly lead to otherwise avoidable sickness and death.

However, as someone who has only recently started to find light at the end of a very long tunnel, I am now struggling with a bad case of “cabin fever.” On some mornings, I don’t even want to get out of bed.  I’m already sick of reading, watching TV, listening to music, walking, playing word games, etc.  I fully support social distancing and government “stay-at-home” advisories and wish everyone would feel the same, but it’s definitely getting increasingly difficult for me to remain positive.

I’m emailing and texting, and “seeing” my friends and family through  Skype and What’s App.  But it’s just not the same as being with them … hugging them, kissing them.  I miss that physical contact so very much.  I miss my bowling leagues and my gym workouts, and all the other aspects of my pre-coronavirus life.

To help deal with my cabin fever, I have returned to re-reading portions of my April, 2017 article, “Inspirational Thoughts for Alzheimer’s Caregivers, Widows, and Widowers.”  I wrote about thoughts and songs that got me through my most difficult moments as an AD spouse caregiver, and then as an AD widower.  Quoting excerpts from my 2017 article …

In “By the Grace of God,” (Katy) Perry sings about how, after a love break-up, she finds herself lying on her bathroom floor.  She sings, “I picked myself back up, I knew I had to stay, I put one foot in front of the other, I looked in the mirror and decided to stay.”  There were many other phrases in “By the Grace of God” that I related to ... lines such as “running on empty, so out of gas” and “found I wasn’t so tough.”  But that song also had the line, “I am not giving up.”  Something else that helped me a lot was re-reading the “Serenity Prayer.” 

Unfortunately, due to my cabin fever I am again experiencing days when I’m “running on empty, so out of gas” … days when I find that I am not “so tough.”  To get through these difficult times, I am trying to simply place “one foot in front of the other” because, as Perry also sang, “I am not giving up.”

I have come so far in these past 4 years.  I will not give up now.  I need to try harder to find “the serenity to accept the things I cannot change and change the things I can.”  I must try harder to find courage in the words of the “Serenity Prayer” and discover better ways to spend my time at home.  I need to get involved in new activities that will bring me happiness so I can avoid sliding back into a period of overwhelming sadness or depression

All of us dealing with loss and pain … and all of us who have moved on to find happiness … must continue doing whatever it takes to remain positive.   Despite coronavirus, we can pick ourselves back up from feelings of despair and move forward … just by putting one foot in front of the other.  

We cannot give up.  Stay safe.  Stay strong. 

Personal Blog #14 ... Continued Happiness ... 3/22/20

I have already posted several Personal Blog columns about my difficulties trying to move on with the rest of my life after losing my wife of nearly 50 years to AD.  This is the last time, however, that I will post a Personal Blog column about this topic.  However, I am planning to continue posting occasional columns on other issues related to AD and caregiving. 

There will be no more columns about my personal struggles to find new happiness because that long battle has been fought … and finally won … even if current or future realities, such as dealing with the effects of the coronavirus, may cause an occasional step backwards now and then.

After 10 years of an almost daily “new normal” while Clare struggled with AD and after grieving for years while Clare was still alive … only to be followed by 2+ years of serious depression and then another 18 months of overwhelming sadness after her death … I have finally arrived at another new normal, one that has brought great happiness back into my life.

Despite our entire world being turned upside down by the coronavirus pandemic … talk about a worldwide new normal … I am now very optimistic about my future.  Why?  Because shortly before the virus began making daily headlines, I had already “found” new happiness.  By sheer serendipity, a woman I had known for many years, also a caregiver, re-entered my life.  We started meeting occasionally at diners simply as friends enjoying breakfast, but our relationship quickly and unexpectedly morphed from friendship to deep affection to emotional and physical love.

 

The physical portion of our new relationship is now, sadly, “on hold” due to the virus constraints and sensible precautions that we must take.  However, we continue to express our happiness through daily texts and phone calls, along with an occasional walk at the beach while practicing social distancing.  Despite current virus restrictions keeping us apart, we both now know that we can look forward to a wonderful future together. 

That is a future I had almost given up on ever finding again.  In Personal Blog #10 (“Life After Moving On), posted on 9/2/19, I wrote about how I had finally moved on in many aspects of my life as a widower, even summoning the courage to try meeting new women through online dating sites.  But I had not yet found that “special woman” I was looking for … that special woman who would bring to my life “more happiness, less sadness, and less loneliness.”  I was still hoping to find my “second act.”

And now, quite unexpectedly, I have found that second act.  For the first time in many, many years I am smiling, laughing, and thoroughly enjoying my time with a special woman again.  For the first time in many, many years I am truly enjoying being alive again.  For the first time in many, many years I now see my future filled with happiness.

Readers may recall that I have written about how Clare had left a letter for me on her computer, a letter she had written when she recognized that she was losing her cognitive functioning.  However, she never told me about that letter.  It was only when going through her computer files after she died that I discovered that letter, as well as a letter for each of our children.  Clare’s letter to me was extraordinarily beautiful, expressing her hope that I would “find continued happiness” after she was gone.  It has taken me nearly 4 years, but I have now finally found that continued happiness.

I hope that readers who have also had problems “moving on” have found some comfort in my Personal Blog columns on this topic … mostly by discovering that they are or were not alone, but also by reading about how my path to finding happiness has been very bumpy with many setbacks along the way.  And yet … I am now enjoying that happier life I sought.

Some widows and widowers seem able to put their grief behind them in a matter of weeks or months and then move on with the rest of their lives.  I certainly was unable to do that.  However, I am now a witness to the reality that even after an extended period of grief, depression, and sadness it remains possible for a widow or widower to find that special someone … it remains possible to find that special someone and enjoy a wonderful “second act” of a life filled with happiness.

If steps you have taken to find more happiness, less sadness, and less loneliness as a widow or widower have not yet been successful, please don’t give up on yourself.  Please consider taking more new steps to try to find that happier future, while also remaining open to possibilities that may arise from chance encounters.  I never thought of my friend as that “special someone” for me … and yet, happily, it turned out that she was.

 

All widows and widowers deserve to find happiness again … we all deserve to find that second act.  Please do not let the death of your loved one end your quest to find continued happiness.