A More Local Future

This post describes, our recovery from the loss of our loved ones to a degenerative neurological condition called Huntington’s Disease. If you wish to read the story from the beginning, you can start here: How We Got Here…

The date was November 16th, 2019. At 2:30 am that Sunday morning this blog went live. I remember the feelings well from that time – the pervasive depression that lapsed occasionally into outright despair. The feeling of isolation and being totally alone in the world. And above all, the sense of hopelessness about the future. I’m not sure exactly why, but I thought telling others about my situation might help them, and I hoped it would help me.

As my wife Janet’s condition continued to degrade over the next year, her weight dropped from over 200 lbs. to a mere 65 lbs. The next big change came January 10th, 2021 – also a Sunday and, interestingly, also at about 2:30 am – when the first phase of my torment ended with Janet passing from this life into the next. I say, “first phase,” because that is all it was, really. When your loved one dies, it’s the start of a new kind of grieving where the person that you grieve is really, truly gone. No ambiguity now, it was all very, very concrete.

However, it was not the end of the change. By the grace of God, I had begun to understand and accept the change that was going on around me. For example, I had reached the firm conclusion that regardless of the nature of the turmoil in your life, it is there for a reason: to prepare you for what is next.

Meanwhile, five and a half hours north of me, but also still well within Texas (Yes, the state is that big…) other events were transpiring. A lady named Jean Barnes was caring for her daughter Jennifer as she approached the end of her Huntington’s Disease journey. We had gotten to know each other through the online support groups for HD Caregivers. This was not, however, Jean’s “first rodeo,” as she had also cared for her husband Don a decade or so earlier as he died of the same disease.

By the time Jennifer died February 19th, 2021, I had a new job, and my daughter Frannie and I had moved to the bustling town of Mineral Wells, Texas. This move put us a mere two hours from Jean’s home in Garland, so when she announced that she was going to have visiting hours for her daughter at a local funeral home, I sent her a message and asked if it would be OK for me to come. My only thought was that Jean should have someone there for support who had traveled that same road.

When I drove three hours from my workplace in Cisco, Texas, to the funeral home in Mesquite, we had communicated several times online, but on the whole, she knew a lot more about me than I knew about her – I didn’t even know what she sounded like. For all I knew she could have had a voice like Marjorie Main. But I found out that she was a gracious hostess with a soft voice, and a gentle Texas plains accent, though with all the other visitors, we really didn’t have much time to talk.

That was the evening of February 25th. The five weeks and three days between then and April 4th (Easter Sunday) life became a kind of whirlwind in which God blessed Jean and me, by allowing us to rediscover our hope for the future in each other.

When we eventually married May 31st, we included in the service several things that referenced our joint past. To begin with, before the service proper started, we acknowledged our deceased loved ones. Next, the colors we picked for the ceremony were blue and purple, as reminders of Huntington’s Disease and Juvenile Huntington’s Disease. Finally, the vows publicly reaffirmed our intention to use our past experiences to help us identify what God has next for us, as a team.

This week is a time for change.

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Choosing to live in a small town always involves making a tradeoff. On the one hand, the pace of life is slower and so is more restful. However, you can be a bit cut off. For example, if a medical problem should arise, you can find yourself feeling isolated, and with few available resources. That is very much the situation if you are living in large portions of northern Texas. From where Michael works in Cisco, the nearest hospital that even has a neurologist on staff is two or three hours away in the Dallas/Fort Worth metroplex. In a situation like that, how do people get support if they, or a loved one, are dealing with a neurodegenerative disease?

Unfortunately, this problem is far from being hypothetical. As the population of Western countries ages, a host of diseases that primarily strike in a person’s “golden years” are becoming more prevalent. And the improving state of healthcare means that people struck with these conditions are living longer.

To get a sense of the scale of the problem, let’s start with that total number of people that have been diagnosed with just a subset of all neurodegenerative diseases. One report indicates:

“Today, 5 million Americans suffer from Alzheimer’s disease; 1 million from Parkinson’s; 400,000 from multiple sclerosis (MS); 30,000 from amyotrophic lateral sclerosis (ALS or Lou Gehrig’s Disease), and 30,000 from Huntington’s Disease. Because neurodegenerative diseases strike primarily in mid- to late-life, the incidence is expected to soar as the population ages.”

Assuming a (very conservative) 1:1 ratio of patients to caregivers, that places a total of about 11 million people in the position of living lives directly impacted by these conditions – and that’s just in the US! The same report goes on to say that by 2030 it is estimated that 1 in 5 Americans will be older than 65 years of age.

When a problem like this arises today, the common solution is to start a movement that seeks to force the government to get involved in fixing the problem – all the while blissfully ignoring how screwed up things invariably get when the government (any government!) decides to “help.”

However, there is an alternative approach that has a long history of solving problems, which is to look for solutions locally and utilize local resources to address the problem. In short, looking for a more local future. Of course, this tactic has the “disadvantage” of requiring people to become personally involved, when it is often much more convenient to just send off your tax money and assume that the people in government will do the job for you.

After much consideration and prayer, the direction of personal involvement is the one which we believe will begin satisfying the commitments that we made when we were married. The idea we have is to form a local support group for those whose lives have been impacted by a neurodegenerative disease. It would be open to patients, caregivers, family members, and friends.

We first approached an organization called The Open Door that is located in Cisco, Texas where Michael works. The organization started providing pregnancy counseling services several years ago, and now provides a wide range of life services including parenting classes, couples and marital counseling, and GED support.

They are excited by this new opportunity and have made their facility in Cisco available to us. Our next steps will be to put together a flyer and an informational brochure. Once that is done, we will start publicizing the new gathering through places like doctor’s offices, commercial and community bulletin boards, churches, and nursing homes. Then there is, of course, the local radio station that Michael has been on already a couple times, talking about caregiving and grieving.

This may leave you wondering where all this new work leaves this blog. Well, it has been a difficult decision, but we have decided that this is the last weekly installment that we will be posting. Producing a weekly post is a grueling schedule. We will remain involved in the online support communities and will be writing additional posts as topics arise – just not every week. We are also pressing on with the effort to get the blog posts turned into a book, more on that should be coming soon.

So, to all of you who have supported this blog, thank you. Your kind words and comments have been more supportive than you will ever know.

In Christ, Amen ☩

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A prayer for when you are looking for what’s next…

“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for the plans that You have for us that are (as you said through Your prophet Jeremiah) ‘for a future and a hope.’ But today I want to bless you especially for guiding me from hopelessness to hope. Thank You for the gentle hand that You rest on my shoulder. Thank you for the patience You show when guiding a wayward spirit such as mine. Although the future is still murky, I can now begin to see at least the outlines of what is ahead. Please show me how to guide others along the way that You opened for me. Amen.”

A Nursing Home’s Responsibility

This post describes, our recovery from the loss of our loved ones to a degenerative neurological condition called Huntington’s Disease. If you wish to read the story from the beginning, you can start here: How We Got Here…

At age 48, I began going to a nursing home every day. My husband was 49 and had become the youngest resident in that full care nursing facility. Huntington’s Disease had begun to take away his independence and the ability to care for himself. The median age of other residents was 70 to 80. Many of these older residents were much more active and healthy than Don, but he made friends quickly and was happy there.

After this nursing home closed, I moved him into another nursing facility, which was close to our home. However, stability was a problem. Within the first year, there were two changes of administrators, a new director of nurses was installed, and the nursing staff on the patient halls seemed to be in a near constant state of flux, with new faces appearing weekly.

Just as we would “connect” and get to know a nurse aide, they were gone. It was disheartening to see the poor attitudes most of the staff displayed, and the standard of patient care was soon on the decline. The administrators (new and old) tried to correct the patient problems in order to keep the patient headcount high, but the organization was struggling to keep afloat financially.

Seeing the bad trends, I tried to get my husband moved to another home, but the new home would call the facility to see what manner of care Don needed. In a few days, we were always told they did not have the necessary staff to care for HD patients. Maybe it was all coincidental, and maybe not.

I was a Mama Bear when it came to my husband’s care, and with eagle eyes I learned to spot problems. I never once raised my voice or used bad language, but the staff got to know me well and probably feared me. They knew that I would not tolerate substandard care for Don – no excuses were acceptable.

But it was not all bad. I must say that in almost every nursing home, there are precious nurses who have dedicated their lives to caring for senior citizens! Many work long hours, and give 110% to make sure that their residents receive the quality of care that they deserve – even if it means going against their own employers. These angel nurses deserve respect, thanks, and lots of praise, and I always made sure to thank the Lord for them!

So, if you are one of them – Thank you for your dedication and service!

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In a study published on March 20, 2021 by the World Health Organization, it was found that over 64% of nursing home staff members admitted to committing some form of abuse or neglect. However, staff members are not the only ones to worry about in long-term care facilities – other residents are just as capable of committing abuse. With increasing life expectancies in our older population, the demand for care homes will only increase.

An added problem has been the recent Covid epidemic, which greatly affected both the residents of our nation’s nursing homes and their families. Visits were denied and families had very little contact with their loved ones. In some cases, even state regulators were prevented from performing their legally mandated oversight responsibilities. These “protective measures” resulted in increasing confusion and isolation on the part of the residents, who could not fully understand why their families did not visit. And the families were frustrated at being unable to see and touch and reassure their family members that they were loved and cherished.

However, in even the best of times, older people are only becoming more vulnerable due to their dependencies related to cognitive and functional self-care challenges. For people over age 65, one in ten suffers from some form of elder abuse – that statistic according to the National Council on Aging. Some estimates say that as many as five million elders are abused each year. One study estimated that only 1 in 24 cases of abuse are reported to authorities. Sadly, two thirds of the perpetrators are adult children or spouses.

There are warning signs of elder abuse, which can include physical abuse, emotional abuse, financial abuse, sexual abuse, and neglect. How can we keep our loved ones safe in a nursing home?

  1. Remember that the lack of family visits increases a resident’s vulnerability to abuse and neglect. So keep your eyes, ears, and nose open. Look and listen to staff, and don’t forget to sniff! The home should not have bad smells consistently. If it does, there are problems.
  2. Check for bedsores or pressure ulcers on your loved one. These preventable injuries typically result from being left in bed for extended hours without supervision.
  3. Are they given basic hygiene, adequate food, and hydration? These are all areas where inadequate care can quickly escalate a critical situation into a tragic one.
  4. Look for behavioral red flags! Changes due to the progression of a degenerative condition are typically slow. But watch for sudden changes in personality, mood, and sleeping or eating habits. If you see signs of depression, fear, or lethargy, take immediate action and talk to the head nurse.
  5. Stay in touch with nursing staff. Compliment them when they are doing a good job. We all need encouragement and praise. However, never brush off possible signs of abuse. Always report it, and don’t be afraid to call 911 immediately if you have urgent concerns. Do not let things slide until there is an injury or gross negligence. Address problems before they become a bad habit.

Of course all this watchfulness goes for naught if you don’t know who to talk to! Step one is to look for a bulletin board. Most jurisdictions require care facilities to prominently display documents identifying the specific rights of a patient and who to contact if you feel those rights are being violated.

Additionally, in the USA, every state has a number of ombudsmen available to speak up for your family members who can’t speak for themselves. When care is insufficient or a nursing home isn’t operating in your best interests, an ombudsman can step in and help you obtain the quality of care your loved one requires and deserves. Their services are free and impartial. The second nursing home that Don was in had a wonderful ombudsman. I had never heard the word before but soon learned what a valuable asset he was to that home. He held a monthly support group meeting for families of residents, and if complaints were expressed, we knew he would get with the right staff to correct the problem.

If you require assistance from an ombudsman for a case of elder abuse or any other reason, you can locate one at the National Long Term Care Ombudsman Resource Center. They can provide a name, phone number, and address for every ombudsman in every state. Please use this wonderful resource.

Here are some general resources for additional information:

National Council on Aging
ProPublica Nursing Home Inspect Summary
The Global Role of the World Health Organization

Brain & Life magazine is published 6 times a year and provides information about Neurology for everyday living. Subscriptions are completely free at: https://www.brainandlife.org/the-magazine

Finally, if you reside outside the United States, your first call should be to the National Health Service for your country. In addition, local support groups or doctors can sometimes provide you leads on where to go for help.

In Christ, Amen ☩

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A prayer for when your heart aches with concern for your family in long term healthcare…

“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for loving us. But today I want to bless You especially for Your watching over my family and friends in long-term healthcare facilities. Bless the nursing staff with wisdom and patience as they care for those who live there. Many residents are in their last weeks or months of life and I pray that You would help them feel loved, cherished, and safe. Amen.”

Time for a Nursing Home? Now?

This post describes, our recovery from the loss of our loved ones to a degenerative neurological condition called Huntington’s Disease. If you wish to read the story from the beginning, you can start here: How We Got Here…

My husband was 14 years into his HD journey when I began to see the need for nursing care than I could not provide. I was working full time, and our teenage son was in high school. Every morning before leaving for work, I would prepare breakfast for my husband, Don, as well as a lunch that he could easily heat in the microwave or that was ready-to-eat cold. Don had been having occasional seizures, but they were suddenly increasing in frequency and becoming more severe. He dropped medicines, and spills or broken dishes were common. Falls were a part of everyday life. From the moment I got home from work until bedtime, I was cleaning, repairing, and preparing for the next day. My sleep at night was a very few hours of tossing and turning.

Finally, I knew it was time.

An opening in a wonderful nursing home became available close to my work location. The Director was a precious lady who helped make the transition much easier for us all. It is so important to develop a relationship with the front office when possible. You will need them, trust me! Don adjusted very well and especially loved Saturday and Sunday because I took him home on weekends.

Although going to visit every evening after work and taking him home on weekends was an improvement, it still wore me down and still led to exhaustion. Then about four months into his stay at this nursing home, I learned they would be closing it down in a month. I had to find another nursing home fast, and quickly located another one close by our home. From the very beginning, it was obvious it was not as caring a place as the first one.

At first I was encouraged to hear they had two other HD patients in this home, but soon realized they were banished with Don down what I came to call “the hallway to nowhere.” The staff’s attitude seemed to be out of sight, out of mind. The call lights were just a waste of electricity. Most of the patients on this hall were non-verbal and non-ambulatory, and as far as the staff were concerned, they were just occupying space.

During my husband’s two years at this home, he suffered two concussions and one broken wrist from falls, and many seizures due to medicine not being given on time or at all. Every evening I swept the floor in his room and every evening I swept up prescription medications that my husband had been prescribed but which were dropped by the nurse and forgotten.

Don had a little elderly friend who had moved to this home from the same nursing home we had first been in. They both had rooms on the same hall. Every morning the nurse’s aide would bring their wheelchairs out to the lobby area in front of the nursing desk. They would sit there all morning until it was time for lunch. One morning, as Don was sitting by his little friend, he noticed the man slump over to one side. Nursing staff and aides passed by their wheelchairs and no one stopped to check on him. Don said he was leaned over so far that he was afraid the little guy would fall out of the wheelchair. When lunchtime arrived several hours later, a nurse found that the little man had died.

I knew the man’s wife and felt so sad and angry that he had died essentially alone, no one noticing that he was even gone.

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As caregivers, we all have some common goals. We desire to see our loved one in a safe, comfortable environment where their needs are met with respect and dignity. We want our loved one to get the best possible care. And we want to see them happy and thriving.

These goals can be met in several possible ways but it takes a lot of preparation, prayer, and investigation to assess your loved one’s needs and find the best solution. This care can sometimes be provided at home or in the home of another relative. When this solution is practical, it is often less traumatic to everyone because the patient can continue to live in familiar surroundings, and family is there to do the caregiving. However, everyone needs to realize this commitment can be challenging physically, mentally, and emotionally.

Moreover, one person should not be expected to be on duty 24/7. From the beginning, there needs to be a schedule for respite for the main caregiver that allows other family members or friends to step in and provide the needed care.

In many situations though, especially with degenerative neurological conditions, the solution demands the involvement of professionals. Seemingly overnight, symptoms can escalate to requiring care in a nursing home. There our loved one can have the skilled care they need and deserve. It is OK to realize that the best care is not always at home.

How do we make these decisions? What are the signs that let us know a decision needs to be made? After all, you would think that a family would give the very best care since we love the patient most. But this situation isn’t just about love. It’s about satisfying a complex and ever-growing set of needs that sometimes require very specific sets of skills and knowledge.

When you decide that it is time for a nursing home, there is one more very hard question that you need to answer: How will you react if you find your loved one has been mistreated?

Probably the most important thing to remember when getting nursing care to come into your home, or placing your loved one in a nursing home, is the fact that your responsibility never ends. Your loved one still needs an advocate to speak up loud and clear when basic needs are not being met. In every care facility, there are wonderful nurses with hearts of gold. Unfortunately, there are also some lazy staff members who just do not care. But you do not have to settle for neglect – and should not under any circumstance!

Make sure your loved one doesn’t feel deserted. Visit as often as possible and drop in for visits at various times of the day so you can observe the staff and their interactions across all shifts. And if the circumstances require it, don’t be afraid to let your inner “Mama (or Daddy) Bear” come out.

Bring pictures so they can recognize items from home. Decorate so they can feel some good memories of childhood or of their children growing up. Make the room as cozy and home-like as possible.

One other small, but very important, thing you can remember to do for your loved one is giving them a loving touch and hug. The small act of putting hand lotion on their hands and arms is so soothing. If it makes our hands feel better to have nice lotion, imagine how relaxing that feels to them! If a child is there, let them help with this. Make some memories! I promise you won’t be sorry. I love this Bible verse from Jude 1:22, “…And of some have compassion, making a difference.”

Next week we will look further into how to be the best advocate for your loved one. We will discover ways to check on nursing homes or home health care companies to reveal those who have poor grades in your particular locale. Let’s be caregivers who show compassion – and make a difference!

In Christ, Amen ☩

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A prayer for when you are faced with making a hard decision…

“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for being our Heavenly Father. But today I want to bless You especially for leading and guiding me when I come to You asking for Your help in making decisions. You are never too busy to hear my prayers and always listen when my heart is aching. Thank You for the peace and comfort You give me when You work in my life. Help me to let You always lead so those who You place in my care receive the compassion and service that they need. Amen.”