PATRICK'S STORY
Patrick with his occupational therapist when he was about 3 years old.
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Patrick at one of his niece's weddings. Isn't he handsome? Patrick loves a good party and he loves to dance! His wheelchair does not hold him back!
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(Please watch our video too - located on our home page or on our GoFundMe campaign page.)
This is Patrick. He is 45 years old. He is my big brother. He loves to laugh. He loves his family, friends, animals (especially dogs and cats), music, McDonald's, Coke, coffee, movies (especially the Hulk), and much more. He is loving, kind and funny. Although Patrick cannot say much, he understands a great deal (perhaps even everything); but he is trapped in a mind and body that make expression extremely difficult and frustrating. Although nothing is "easy" for him, he has always embraced and loved life. Patrick has Cerebral Palsy and is severely affected both physically and developmentally. Patrick is unable to advocate for himself and requires 24-hour total care.
I have been my brother's legal guardian for over over 10 years and have been advocating for him for more than 15 years. My father died in 2001 from cancer and my mother is no longer able to advocate on Patrick's behalf due to age- and heath-related issues. I have made decisions for Patrick involving: housing; day activity programs/workshops; medical care, including doctors, dentists, hospitals, and surgeries; physical, speech, and occupational therapies; summer camps and respite programs; nutrition; transportation, and more. Finding services, programs, and residential options for individuals with disabilities - especially adults - can be very challenging.
Over the years, I have been frustrated by the lack on online resources available to help guide me in making serious, and also everyday, decisions for Patrick. And, I wished many times for a platform that allowed families to post and read thoughtful reviews on care providers and other services - especially in regard to residential care providers due to the fact that this has been the most difficult information to access and what I have needed the most.I looked and looked for THAT site and realized it just did not exist - so, I have decided to build it myself.
Patrick and I grew up together in the same house, but my parents knew that he would need 24-hour total care his entire life, and that we (siblings) would not be able to provide this level of care for him long-term, unfortunately.
In 1992, at the age of 22, Patrick moved into a group home that provided excellent care for years. However, the care, services and oversight declined over time, and small issues eventually became big issues - some even significant enough that compromised Patrick's health and safety, requiring state-level intervention. After realizing this care provider organization was not going to change at the very top, I decided to move my brother to another home. But, it's not an "easy" process. It is actually very complex and can take a very long time. While he remained in that home, I looked aggressively for over three years. The problem in Ohio is that there is a shortage of accessible residences for developmentally disabled and long waiting lists. Emergency situations of course take precedence. At that time, Patrick was not deemed an emergency.
In Ohio, the county boards of developmental disabilities assist families in this process. But county, nor state, employees are permitted to give their opinion about the quality of care that organizations provide - even when the care providers have been negligent and cited. This is extremely frustrating, especially when you have a loved one who cannot communicate regarding their care. There are public "provider compliance" records available online via state developmental disabilities websites; but knowing how to access, navigate and make sense of these records is another story altogether. And, not all reports are available, nor are all incidents "substantiated". These reports do not tell the whole story and this is the case for all long-term facilities, regardless of the population. State databases are often outdated and many care providers and homes are not even listed. When looking to place a loved one into a home for the first time, or move them from one facility to another (whether this person is developmentally disabled, aging, physically ill, or mentally ill), you should be able to get a jump start on the process through online information and feedback. This is especially true for those families who need to do this from afar or are housebound...often they are not able to investigate options in person.
After those three years of looking, I finally found a new home for Patrick. Prior to Patrick moving in, I met with the county and the care provider multiple times, and countless phone calls were made, emails sent and documents signed to ensure all was in place for him to move in - this is a very involved process.
Finally in February of 2015, Patrick moved into his new home, and it was a nightmare. I thought I had finally found the perfect place for Patrick, but within the first week of him living there, he was so severely neglected that we were forced to move him immediately out of the home and he stayed at my sister's house for a week until we could find an emergency respite facility for him to move into on a short-term basis. He stayed there for 10 months, and on November 2, 2015, we moved him into another home. It has been a bumpy start, but there is hope!
The county investigated the situation that took place in February and now a legal organization in Ohio that advocates for the disabled is also investigating the situation. I have since have found out that this organization's residential license was suspended for months just prior to Patrick moving in - a "small detail" that was not shared with me as his guardian.
These years of advocating for Patrick and acting as his legal guardian have taught me so much about the system of developmental disabilities and the serious struggles for individuals and their loved ones. This recent experience with my brother has only reinforced the urgency of this resource and I am working very hard to build it for everyone that is facing struggles - whether related to an illness, disease, disability, or age - and require more information in order to make better decisions for themselves and/or their loved one(s).
Of course, there are many care and service providers that are doing amazing work every day, and doing it well. And, we need to hear more about these providers! But simply because an organization once had a great reputation does not guarantee that it always will. Leadership, budgets, and even external factors can affect, and even change, how these care provider organizations operate. This is why we need to keep one another informed the best that we can (on top of doing our own research), and remember that it's imperative to keep up to date with these changes when we are making critical decisions.
Me and my dad - college graduation
My father, Jim Braham, died in 2001 of kidney cancer at the age of 68, Prior to diagnosis, he appeared to be the picture of health - even running on a daily basis. My dad loved life. He loved his family, debating controversial topics, reading, travel, and learning about people and what "made them tick". He was very curious and asked a lot of questions. A retired journalist, he never spent a minute of life being "bored," He had so much on his "bucket list" still left to do. One May morning he was on his daily run, collapsed, and was taken to the ER. He was diagnosed with Stage IV Kidney Cancer and had a nine-pound tumor on his kidney surgically removed a month later. Yes, nine pounds. It was too late. The cancer had spread everywhere. He died five months after being diagnosed.
His battle against cancer involved surgery, home healthcare and hospice. As anyone knows that has lost someone to cancer, it was an intense roller coaster of emotions. He was devastated. My dad wanted to live. He fought hard. It all seemed to happen so fast. I made the major decisions with my father regarding his care, until he became too sick to make any decisions.
It was such a shame because my father did complain to his doctor for years about lower back pain and having to urinate multiple times in the middle of the night every night. He was bloated and complained about that also. The doctor that he complained to was his oncologist that had treated him successfully years earlier with radiation treatment for early stage Prostate Cancer. He kept in touch with this doctor and refused to get a second opinion about the back pain because he trusted his oncologist explicitly. He was told that he should "cut back on his golf game" and "take it easy" more often. He was also told that urinating multiple times a night is a "very normal issue for the aging population." While this might be very true, he never ran one test. Not one.
After his surgery, I was working full-time and could not be with him during the day. I hired three different home healthcare agencies due to staffing and care issues. I remember feeling so frustrated and angry that he had to go through all of this and I wanted to be able to help him more. I wasted so much time trying to figure out who to hire. I had no idea who to turn to and what companies offered the best care.
He couldn't eat, was hallucinating and was in terrible pain. I did not know what to do. At that time, the hospital home healthcare nurse was visiting him daily to check in but she was not able to manage his pain. One day it was so bad that I took him to the hospital where his doctor's office was located. His doctor wrote a script for an anti-psychotic medication and told me to be on "suicide watch." I don't know why I filled that script. I knew it didn't seem right. But I was exhausted and desperate to help my father. I called my friend who is a nurse and told her what happened. She told me to get him to the ER immediately. I looked in my rear view mirror and he was seizing in the back seat from the anti-psychotic. He was admitted to the hospital for a few days and sent back home.
Things of course continued to get worse. One night, in the middle of the night when I just couldn't watch my dad suffer anymore, I called a local hospice and broke down on the phone and explained that I didn't know what to do. A nurse came to his house a few hours later and they took him to their hospice house. It was amazing - he was finally peaceful and his pain was managed. I was informed that not only was the medicine that he had been on making him even sicker because of the dosing and drug interactions, but that he shouldn't have been on the medications at all.
My dad suffered unnecessarily for so long. I should have called hospice earlier but I did not know. I cannot say enough positive things about this organization and plan to submit a wonderful review for them on CareSpotlight. They brought my father peace and for that I will be forever grateful.
I wish I would have had access at the time to an online resource like CareSpotlight.com. Even though it was 14 years ago, there is still a severe lack of quality reviews to turn to and trustworthy mediums to connect with others going through similar situations.
His battle against cancer involved surgery, home healthcare and hospice. As anyone knows that has lost someone to cancer, it was an intense roller coaster of emotions. He was devastated. My dad wanted to live. He fought hard. It all seemed to happen so fast. I made the major decisions with my father regarding his care, until he became too sick to make any decisions.
It was such a shame because my father did complain to his doctor for years about lower back pain and having to urinate multiple times in the middle of the night every night. He was bloated and complained about that also. The doctor that he complained to was his oncologist that had treated him successfully years earlier with radiation treatment for early stage Prostate Cancer. He kept in touch with this doctor and refused to get a second opinion about the back pain because he trusted his oncologist explicitly. He was told that he should "cut back on his golf game" and "take it easy" more often. He was also told that urinating multiple times a night is a "very normal issue for the aging population." While this might be very true, he never ran one test. Not one.
After his surgery, I was working full-time and could not be with him during the day. I hired three different home healthcare agencies due to staffing and care issues. I remember feeling so frustrated and angry that he had to go through all of this and I wanted to be able to help him more. I wasted so much time trying to figure out who to hire. I had no idea who to turn to and what companies offered the best care.
He couldn't eat, was hallucinating and was in terrible pain. I did not know what to do. At that time, the hospital home healthcare nurse was visiting him daily to check in but she was not able to manage his pain. One day it was so bad that I took him to the hospital where his doctor's office was located. His doctor wrote a script for an anti-psychotic medication and told me to be on "suicide watch." I don't know why I filled that script. I knew it didn't seem right. But I was exhausted and desperate to help my father. I called my friend who is a nurse and told her what happened. She told me to get him to the ER immediately. I looked in my rear view mirror and he was seizing in the back seat from the anti-psychotic. He was admitted to the hospital for a few days and sent back home.
Things of course continued to get worse. One night, in the middle of the night when I just couldn't watch my dad suffer anymore, I called a local hospice and broke down on the phone and explained that I didn't know what to do. A nurse came to his house a few hours later and they took him to their hospice house. It was amazing - he was finally peaceful and his pain was managed. I was informed that not only was the medicine that he had been on making him even sicker because of the dosing and drug interactions, but that he shouldn't have been on the medications at all.
My dad suffered unnecessarily for so long. I should have called hospice earlier but I did not know. I cannot say enough positive things about this organization and plan to submit a wonderful review for them on CareSpotlight. They brought my father peace and for that I will be forever grateful.
I wish I would have had access at the time to an online resource like CareSpotlight.com. Even though it was 14 years ago, there is still a severe lack of quality reviews to turn to and trustworthy mediums to connect with others going through similar situations.
As my mom's primary health advocate over the last several years, I have learned that you must be very involved in your loved one's care. From doctor's visits, to hospital stays, to any type of care or service that is provided - you can't walk away and "hope for the best". And in the case of short- or long-term care (whether at a facility or in a home), you have to check in, follow up, and stop by. If you are unable to physically be present, schedule family members and friends to be there.
At the age of 82, I think my mom is doing pretty well, but she has had her share of illness, injury, and age-related issues. She is a two-time breast cancer survivor and has been cancer free for eight years. Her treatments included radiation, chemotherapy and hormone replacement. She currently resides in a long-term care facility. She moved from independent to assisted living after serious back surgery and a two-month stay in a rehabilitation facility. Unfortunately, a fall and progressive dementia required her to receive more intense care, and she moved to their nursing unit last year. She is still independent in many ways and is able to communicate with me in regard to certain things that are happening at her home. But dementia has robbed her of her short-term memory and it is so frustrating for her. She also now has Macular Degeneration in both eyes which is a tough pill to swallow for such an avid reader.
So much can get lost in translation when a loved one is living in a residential facility - similar to a hospital. There are typically layers of management and oversight and multiple people working with, and caring for, your loved one on a daily basis. The facility administrator should have open communication via phone and email with families and be willing to make necessary changes. Direct care staff like nurses, aides and therapists are often wonderful. And sometimes they aren't so wonderful. They may even be negligent or abusive. Families need to report incidents and any issue immediately that they are unhappy with - from the quality of food, to the quality of care. If loved ones do not do this, facilities might not be aware of dissatisfaction and changes will not be made. On the contrary, some facilities won't change no matter how many complaints are filed, and sometimes families need to make the difficult decision to move their loved one or hire another provider. In these unfortunate situations, there are long-term ombudsmen and state agencies that should be notified so that they can investigate claims.
At the age of 82, I think my mom is doing pretty well, but she has had her share of illness, injury, and age-related issues. She is a two-time breast cancer survivor and has been cancer free for eight years. Her treatments included radiation, chemotherapy and hormone replacement. She currently resides in a long-term care facility. She moved from independent to assisted living after serious back surgery and a two-month stay in a rehabilitation facility. Unfortunately, a fall and progressive dementia required her to receive more intense care, and she moved to their nursing unit last year. She is still independent in many ways and is able to communicate with me in regard to certain things that are happening at her home. But dementia has robbed her of her short-term memory and it is so frustrating for her. She also now has Macular Degeneration in both eyes which is a tough pill to swallow for such an avid reader.
So much can get lost in translation when a loved one is living in a residential facility - similar to a hospital. There are typically layers of management and oversight and multiple people working with, and caring for, your loved one on a daily basis. The facility administrator should have open communication via phone and email with families and be willing to make necessary changes. Direct care staff like nurses, aides and therapists are often wonderful. And sometimes they aren't so wonderful. They may even be negligent or abusive. Families need to report incidents and any issue immediately that they are unhappy with - from the quality of food, to the quality of care. If loved ones do not do this, facilities might not be aware of dissatisfaction and changes will not be made. On the contrary, some facilities won't change no matter how many complaints are filed, and sometimes families need to make the difficult decision to move their loved one or hire another provider. In these unfortunate situations, there are long-term ombudsmen and state agencies that should be notified so that they can investigate claims.
CareSpotlight.com is about much more than residential facilities. We have a number of care and service provider categories in our directory that are all subject to consumer review (listed below). We are so excited to bring you this resource and we appreciate your help so very much!
CareSpotlight.com's directory will include the following for children, teens and adults in need:
CareSpotlight.com's directory will include the following for children, teens and adults in need:
- Short- and long-term residential care facilities and communities
- Wheelchair and elder-friendly transportation
- Home healthcare and personal companion services
- Physical rehabilitation facilities
- Physical, speech and occupational therapy
- Hospice
- Day activity centers and workshops
- Supported employment
- Recreation and wellness programs
- Respite
- And more
So many people have served as the inspiration for this website, like:
-The single mother who received chemotherapy alongside my mother for weeks;
-My friend whose wife has Alzheimer's, and even though he needs some help at home, he won't hire anyone because he doesn't know who to trust;
-My friend who placed her adult child with developmental and physical disabilities in a residential facility after caring for her for 44 years at home. She had no idea how to know what care providers/group homes to trust - yet it was the most important, and most difficult, decision she has ever had to make.
-My friend whose sibling is schizophrenic and needs a safe place to live but is states away;
-Many friends who want to make the best care decisions for their aging parents;
-So many people I have talked to that never seem to know where to go for rehab following surgery;
-The mother whose posts I read on facebook about her young son that has a traumatic brain injury and will never be "the same" as he once was;
-All of our injured Veterans who have fought for our freedom; and for all the people out there who have personal battles to fight and tough decisions to make.
-Most importantly, I want this resource to serve those who are vulnerable and unable to advocate for themselves, and especially for those individuals and families that have experienced the horrors of abuse and neglect at the hands of a care or service provider.
Let's band together to ensure that those we love, and all people, are protected.
Let's also spread the word about the providers who deliver quality care and services!
This site is for all those in need of support today.
Thank you for inspiring me and I hope this resource will help YOU.
We all have our stories. Together, we can empower one another and change the future of care.
-The single mother who received chemotherapy alongside my mother for weeks;
-My friend whose wife has Alzheimer's, and even though he needs some help at home, he won't hire anyone because he doesn't know who to trust;
-My friend who placed her adult child with developmental and physical disabilities in a residential facility after caring for her for 44 years at home. She had no idea how to know what care providers/group homes to trust - yet it was the most important, and most difficult, decision she has ever had to make.
-My friend whose sibling is schizophrenic and needs a safe place to live but is states away;
-Many friends who want to make the best care decisions for their aging parents;
-So many people I have talked to that never seem to know where to go for rehab following surgery;
-The mother whose posts I read on facebook about her young son that has a traumatic brain injury and will never be "the same" as he once was;
-All of our injured Veterans who have fought for our freedom; and for all the people out there who have personal battles to fight and tough decisions to make.
-Most importantly, I want this resource to serve those who are vulnerable and unable to advocate for themselves, and especially for those individuals and families that have experienced the horrors of abuse and neglect at the hands of a care or service provider.
Let's band together to ensure that those we love, and all people, are protected.
Let's also spread the word about the providers who deliver quality care and services!
This site is for all those in need of support today.
Thank you for inspiring me and I hope this resource will help YOU.
We all have our stories. Together, we can empower one another and change the future of care.
