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.”

Fear of the 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…

My husband was in his fourth year of needing full time care in a nursing home due to Huntington’s Disease, when he suddenly began to repeatedly try to run away from the facility to go back home. We lived 20 miles away, and at this time, he could hardly take a step without falling. To make matters worse, he began to get aggressive with anyone who got in his way. One day I got a call at work from the Director of the nursing home, telling me they had had an “incident” with Don, and they had had to call the police to restrain him. He was OK, but he had been transported to a local hospital until they could decide what to do with him. He had shoved a little elderly lady when he was trying to make a run for the door to get outside. The little lady had no injuries, but was understandably traumatized. The police were involved in case charges were filed against him.

When I got to the hospital, Don was in a cheery mood. He had no memory of what had happened and was actually loving all the attention he was getting in the hospital. He was put in the ICU so he could be monitored all night. The next morning, two police officers came to take Don to a psychiatric hospital where they could do an evaluation of all his medications.

My heart broke when I saw them place Don in the back seat of their squad car and speed off. I needed to tell Don one more time that he would be OK, that I would check on him daily, and that I loved him. Little did I know that I would be unable to even see or visit him for seven days. Then I could only visit for 30 minutes, twice a week. It was a scary place to visit. I looked around at all the men in his visiting area, and some were huge burly men who seemed to pick a fight with anyone around. Thankfully, Don kept to himself.

I was so afraid for his safety. Fear became my constant companion. Would he be safe? Would his medicines be regulated so others would feel safe around him? When these sorts of things happen to other people, there can be added worries about family finances. They might lose their home. They may have to go down to one car. And then there is medical care.

After I became a caregiver, a whole new set of fears arose. I was not sure I could even give Don good healthcare. I worried about whether I was physically, emotionally, and spiritually prepared to literally give my life to caring for another person. I was uncertain about how long this journey would last or how bad it would get. When I am cooped up in the house 24/7 and can rarely have a meal out with friends, will I even have a social life?

I worried about our two children during these years. How would this all affect them? Both were smart and made good grades in school, and both had close friends. Would they be comfortable inviting friends over… or would I be comfortable with them inviting friends over? We never knew what Don’s mood of the day might be. And, if one of the kids stumbled, or dropped a dish, or forgot something, I prayed it wasn’t an early sign. Only parents of at-risk children can understand what this truly means. This brought me huge fears as I never wanted to see my own flesh and blood have to live their life with HD.

In the end, at the psychiatric hospital, all Don’s medicines were stopped and slowly a few were added back, with a few new ones. He was now very calm and compliant and after six or eight weeks, he was cleared to go back to the nursing home. However, the Director had decided he would not be allowed to move back. Every nursing home I talked with gave me the same answer. No. They were not able to care for HD patients. Eventually, after meeting with the Director at our original nursing home, she agreed to allow him to come back on a trial basis. It was a calm, sweet patient who returned, and there were no more behavior problems.

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There are very real fears and uncertainties that patients with degenerative neurological conditions and their caregivers might experience – even before they know anything is definitely wrong. These diseases have so many possible early signs and symptoms that anger episodes can seem as though the person is just having a really bad day and overreacting. Often, the explosive person forgets it as soon as they calm down and cannot understand why the caregiver can’t just let it go.

I remember being hurt by things said or done by my husband, and it was always up to me to forgive and forget. He saw no problem with his actions and it was just easier for me to be the one to try to make things right. It was happening frequently and I became understandably fearful that this was the new normal.

The best thing I could do at those times was to get alone and tell God about it. He knows the situation, but I can pray to ask for His help for my fears and heartaches because I am His child. He loves to hear from His children and longs for them to talk to Him every day. In Philippians 4:6-7, God tells us not to worry about anything, but to come to Him and let Him know our needs. He gives us a great peace in our hearts and minds. He understands and comforts us! And He is waiting to hear from you, too.

Certainly when I am unsure of what my future might hold, fear often grows as my faith is challenged. Perhaps we see our loved one with health problems but have no idea yet what might be the cause. Every visit to a doctor makes you wonder if it might be the appointment when you get a diagnosis.

Other areas that brought me fear were parts of caregiving that only grew more difficult. My husband had the diagnosis by now and we knew HD could stretch on for years. I wondered which symptom would show up next. How long would he be able to work? When would he decide to make small repairs needed around the house? Every time he drove the car, I was terrified he would have a wreck. His braking response was slow, and his speed control was very erratic with an uneven pressure on the accelerator. But I knew that, for him, giving up driving would not be an easy transition.

Fear is a very normal human response and we learn to express it at an early age. A baby cries in fear when someone else is caring for them and they want their mommy. Kindergarten students are often scared and fearful on those first few days in a classroom setting. As a school age child, I never would go to sleep with one leg out of the covers and my foot dangling off the bed. I had a fear that a tiger or bear would surely take a bite out of my toes.

As a caregiver or friend to those with health problems or who are grieving, I should be ever mindful of the trap that fear places us in. It can stop us in our tracks and the burden of our daily life becomes almost unbearable. I can truly grow in this experience when I allow our Heavenly Father to lead and guide me.

I had to go to the Lord all through each day, to ask for peace in my heart and mind. All through the day I would think of the verse in Psalms 34:4: “I sought the Lord, and he heard me, and delivered me from all my fears.” All through the day his presence helped me put away those fearful thoughts.

In Christ, Amen ☩

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A prayer for when you are feeling fear of the future…

“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 how You love and protect Your children. But today I want to bless you especially for how you are with me every single moment of every day. You know when I am feeling depressed, overwhelmed with duties in life that seem to never end, scared of what the future holds and full of fear. Help me to turn my thoughts toward You when I am weak. Teach me to remember to depend not upon my own abilities, but upon Your strength. Amen.”

A Family Secret

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…

Do you remember being 18? For some of us, we really have to clear the cobwebs in our memories to go back that far! I was at college, and away from home for the first time. My home life had been very sheltered, and I could be described as naïve and innocent. My daddy had died when my twin sister and I were just 15 months old and our older sister was five. Mother was a strong Christian lady who was determined to raise her daughters in the right path. Second semester of that first year of college brought in some new students. After mutual friends introduced me to a handsome young man from Indiana, we became friends and started dating.

Don was a “life of the party” type guy, and I was much more like a wallflower. I have heard that opposites attract, and in our case it was true. During those months of dating we began to learn more about each other’s family backgrounds. I told Don about my mom’s mother dying of a brain tumor, and I learned he recently had lost both of his dad’s parents. His grandpa died of lung problems that originated during WWI from inhaling mustard gas. And within an eleven-day span, his grandma died in a different hospital from complications of something called Huntington’s Disease. When I asked him about HD, he was very vague and honestly didn’t know much about it, nor how to describe it. He just said she had been sick for a really long time. I remember thinking I would look it up in the encyclopedia next time I was in the college library.

When I did so, I found a total of just three or four sentences describing Huntington’s Disease. It was a neurological disorder. The main symptom was chorea or the so-called St. Vitus Dance. One famous person with HD was Woody Guthrie, who wrote “This Land is Your Land, This Land is My Land.” Given the paucity of information, I decided it must be some minor thing that sure didn’t deserve any worry or concern or further research on my part. We were in love, and nothing else mattered.

Don and I were married in August of 1972. At least a couple times a year, we drove up to Indiana from Missouri to visit Don’s family. We had one concerning, growing question when we visited his parents, and it involved his dad’s health. Something strange was going on, but we had absolutely no idea what was wrong. Shortly after my father-in-law’s parents died, he had to be hospitalized in a mental health facility for several weeks. There he was given some treatments, and different drugs were given to try to help him.

Even though Don questioned his mother about his dad’s health every time we visited, she said the doctors were just unsure of what was causing these mental, emotional, and physical problems, and not to worry about it. His dad was having problems at work over minor issues that he made into very major problems and was unable to continue working. He began stumbling and falling more. At least one wreck in the family car happened with him driving, and thankfully no one was hurt. He was going to several doctors, who each seemed to think adding another pill would “fix” him. Nothing was helping.

Eventually Don’s dad was moved to a nursing home for medical care. If anyone else had even an inkling that this could be HD, it was not shared with Don or me. It was apparently, a family secret. Even when we asked specifically if this could be the same disease that Grandma had on her death certificate, we were told his health problems were different. By mid 1987, my father-in-law was in his third nursing home.

For anyone who is familiar with HD, this can be easily understood. In one nursing home, a male aide made my father-in-law mad and he shoved this guy so hard across the room that he fell and broke his collarbone. The nursing home administrator gave my mother-in-law a short time to find another placement for him. Eventually he ended up in the Indiana State Hospital, the same hospital where his own mother died of HD. Eventually I learned he was the third generation from this family to be hospitalized for HD there.

A social worker took an interest in Don’s dad and saw one of the letters we wrote him. She contacted me to let me know how much he enjoyed the letters, and gave me a list of some things he needed or wanted, so we began sending care packages. This social worker asked me if we were educated about Huntington’s Disease. I told her we only knew my husband’s grandmother died from HD, but had really no other knowledge. She seemed very concerned and asked if she could mail me some information.

I was happy to finally be able to learn more about this disease, but was devastated when the social worker told me my husband could have the gene too. I was just stunned that it could be hereditary. Why had no one told me? Family members knew but no one ever even hinted at this information. Don knew I had begun getting more information about HD, but he responded with irritation and disinterest. We now had two precious children, and soon I realized they could be carrying the gene too.

I read and reread every article I received many times. I wrote to every author, medical center, or university listed, asking for more information. I began to gather a thick folder of articles and pamphlets and searched each one to try to convince myself that our little family would never see this horrible disease. That is one thing about these kinds of pamphlets about HD, nothing is sugar-coated. The Web and Facebook were still far in the future so absolutely everything I knew or could learn was in this published material. The materials gave the doom and gloom picture of HD because there was no current news about possible treatments or testing for the gene. Many of the pamphlets were several years old.

On January 20, 1988, my father-in-law died from complications of HD. I knew he had three brothers, all who were by now healthy, mature men. It seemed Don’s dad was the only one of the four kids who inherited the HD gene, but 25-30 years later, I finally learned the truth. There was also one daughter who had HD. No one had even told me a daughter existed. She had separated herself from her family when she became old enough to leave home, and she was never discussed. Little did I know that when my husband and I first married, this daughter lived just a few houses down the street from my in-laws. I could not wrap my mind around how some HD family members could stick their head in the sand and seem to deny anything was going on. That sure didn’t make the problem go away, nor did it strengthen my trust in those family members who kept this information quiet.

As I learned more about HD, I began consistently seeing those small “soft signs” in my husband. When I shared this with my husband’s mother privately, it was not well received. My greatest need was for someone who had been through this to tell me I wasn’t going crazy; that yes, everything I was describing was part of the beginning signs. She insisted Don did not have HD and I needed to quit thinking he did. It made my life as an HD wife so much more difficult and lonely.

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Despite all the changes and challenges, I have been left with no doubt that I have a Heavenly Father who loves and cares for me. For example, I began praying several times a day, for even one HD caregiving friend. God taught me much about His care of me in the following year. I could go to Him all through the day, to share my thoughts or verbal prayers, and He was always there to listen and comfort me. Daily I thanked Him for how He would eventually answer my heart’s desire. But my need for this kind of Christian friend was overwhelming to my very heart and soul.

After praying diligently for over a year for this HD friend I needed, God gave me three within a couple weeks’ time. One was a man whose wife had HD, and one was a lady caring for her husband. The third was an HD widow, who now had two sons with HD. All three friends were precious to me, all with children who either had HD, or with children at risk of carrying the gene. Most importantly though, we could all pray together.

That was 30 years ago, but my heart is still full of thanks to the Lord for bringing these “angels” into my life. One of my special friends has passed away, but I am still in touch with her daughter-in-law and some of her grandchildren. Two of these friends are still my friends today.

This is just one example of God’s care for me. In the weeks ahead, I will share more of the story of how HD has affected my life as a caregiver. I may not need the support and encouragement I so needed 30 years ago, but I will always stay involved in the HD community, to be a friend to others on this path.

I am often reminded of the first part of the verse in Mark 7:37. “And they (the people witnessing the miracles) were astonished beyond measure, saying, ‘He has done all things well.’”

Yes, He does!

In Christ, Amen ☩

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A prayer for when you need comfort and understanding…

“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 life and breath each day. But today I want to bless You especially for Your presence that calms my worries. Help me to always remember You care deeply about every detail of my life, even when some details are unknown to me. I will trust that Your plan for my life is good, when I allow You to lead and guide me. Amen.”