Part 1 of 2 Your disabled child’s caregiving sibling. What we want you to know.
My brother had down syndrome. He died at 50. He came to live with me 3 years ago when he was 47 and the way it happened was traumatic for all involved. It didn’t have to be. I am a member of an amazing online group of over 5000 siblings and I hear over and over the difficulty siblings have working with their parents to prepare for the day they take over care of their disabled sibling.
I had two weeks to move my sibling to where I was living in another state. After a lifetime of reassuring my parents that I would always take care of my brother, it still happened this way. I had young children and a job. My sibling had very little resources. I had not seen him face to face in several years but I knew he was showing signs of dementia the last time I saw him but I had no idea how he was now. I had offered to take my sibling for the summer, for a week, anything to get him used to being with me and my family but our mom always refused. It’s complicated and dysfunctional. A story for another day.
By the time my parents decided they could no longer care for my brother, he was a mess. He did not have an appropriate medical team caring for him at the time and he had uncared for physical and mental issues. They handed him off at a highway rest stop half way between them and me. He never saw them again. It didn’t take me long to figure out he was not well. I was scared for his life as we drove back to my home state. It was two days of absolute terror for both of us. I called my husband and told him to meet us at the hospital. My brother had been refusing to eat or drink and from the looks of him, this wasn’t a recent problem. He was in a full-blown anxiety. He didn’t understand where he was or why he couldn’t go home. We had to carry him screaming and fighting into the emergency room to get him the care he needed. I knew from my experience in health care that he would need placement somewhere quickly and how difficult that was going to be. His dementia had advanced to the stage that I could not safely care for him at home without significant resources that were not immediately available. I also knew that the fastest way to get him placed was to refuse to take him home. Saying those words at the hospital shattered me. After a lifetime of promising my brother I would take care of him, this was devastating. I was on the phone constantly during that first week with the state trying to get him into the system. I hired a social worker to help us. The only option for him on short notice was a nursing home. Every other option had lengthy waiting lists. Only one nursing home had a bed available. I was grateful it was nearby.
I spent hours every day in that nursing home caring for him. He wouldn’t let anyone else bathe him. In his mind, if he refused everything he could go home. We spent a lot of time sitting on the floor near the locked door waiting for a ride that would never come. He spent months sleeping on the sofa in the lobby so he wouldn’t miss his ride home. I played him music and videos on my phone to distract him. I coaxed food into him. I brought his favorite drinks and treats. My kids, his niece and nephew, came to visit and cheer him up. I trained the staff to care for him. Some got it, most didn’t. We clung to one another like we were in a storm. That narrative continued for over 2 years until he died in my arms. The stress and time I spent with him made it impossible for me to continue working by that point. His health had declined. My health had declined. I couldn’t leave him in the nursing home any longer but it was too late. He was already dying. We were able to bring him home to die. My brother was my stabilizing source of love and support throughout my life. We fought. We argued. We laughed. We grew. We forgave. We teased. We loved. We were so proud of one another. We were siblings.
I consider my story an extreme example of what can go wrong but the lessons are the same. It doesn’t have to be traumatic. Siblings shouldn’t have to fight to get prepared for the inevitable. At some point, someone will have to take over the care of a disabled child. This is what we wish parents knew.
Parent’s may not realize this but when you have a disabled child and they have siblings, one of those siblings very early on became the caregiver that will carry the disabled sibling to the end. They will probably do it alone no matter how many other children you have. For those of us that became that person, it happened before we were even aware of it. It’s in our souls. I was 9 being called to the special ed room to help manage my brother’s behaviors. I knew what to do. At 9 when the adults who were educated for this purpose didn’t. We are not like other people. It’s no more a choice for us then it was for
Part 2 of 2 our parents.
The care we provide when we take over may look different. We probably can’t be 24/7 caregivers. We still have to make a living. We may have young children. Transitioning into group homes or facilities may need to happen. Trust us when we say we are not “dumping” them. No one will monitor their care better than us. No one will fight for their care harder. If dementia is at play, let them move while they have the chance to adjust and form memories.
We are all on the same page. We are your allies and will do everything we can for our sibling. Work with us. We aren’t judging you. I can’t imagine how difficult it would be to spend a lifetime caring for a child and then have to say you can’t anymore. Or worse, die and there is no plan.
We learned by your side how to care for our siblings. We also bring our own experiences to the table. Often professional skills. Most of us go into healthcare or teaching. Some of our earliest inspirations were our sibling’s therapists, nurses, doctors and teachers and you, our parents. Caregiving is what we do.
We do expect more from our siblings. We have a different relationship with them and often see what our siblings can do when the parents aren’t around. At the same time, we know keeping them more independent is also a challenge. My brother loved to be waited on. He was also perfectly capable of making himself a sandwich. So, when we see our parents doing for our siblings when they can do for themselves because it’s easier, we understand how exhausting it is and why this is happening. We also see it as a sign maybe it’s time for some changes.
I also hear from my online group is the immense empathy we have for our parents and how difficult this transition is for them too. It’s why we sometimes don’t push as hard as we think we should. We are balancing our parent’s needs, our needs and our sibling’s needs. Many of us also have children and spouses to consider as well. Let the transition happen when you can still be part of it. My brother’s story should not happen to anyone else.
I've been recovering from a car accident I have abdominal wall denervation and a crushed vertebrae and three herniated discs. I talked morphine every day. I have anxiety and depression. I live and care for my Downs syndrome daughter as well as my 82 year old mother who has pancreatitis the beginning of dementia and has just been diagnosed with lung cancer. She is coughing up blood. My mother smoked all her life and I have tried everything to slow and stop her from smoking and she won't. It breaks my heart every day to see this so I stay in my basement most days I need help I can't cope anymore. How can I stop her from smoking ??
We are currently looking for a new Co-Leader for the Multiple Health Challenges group. We have grown quite a bit and just passed 1,500 members. In the past co-leaders have been golden, really helpful for me when I got sick or burnt out and had to step away for a few days. I am looking for someone to welcome new members, comment or respond to most posts or other comments, make new posts to the group every once and a while, and preferably someone who has physical and emotional health challenges so they can best relate to and understand where other members are coming from when they post or comment.
It is important for the group to have two distinctly different voices to support people because people might relate more to one of us. What is a really good situation is if we both respond to the same posts, welcome new members from different perspectives and provide voices for people that are accessible and relatable. There is a commitment needed that you monitor activities on the group regularly and can respond pretty quickly.
Offering your own posts provides more content for the group…and when posts pose a question they keep things moving forward. I can assist and support by offering to look at your new posts for feedback and editing before you post if you would like it, comment on your posts to get the responses going to best support your efforts, help finding memes or images, and support you if we are dealing with someone struggling …. Like sounding suicidal or being manic…and I will check in to make sure you are happy and comfortable!
I look at potential leaders' history of posts and/or comments that have helped and supported others in the past. Willingness to be honest and open about your own health challenges is crucial to best support people. A co-leader works together with me for some new posts and drafting new questions and is concerned about the well being of all members and can empathize with their paths.
You will get access to the Community Leaders group and your name will have a “Group Leader” tab next to it up top on your comments and responses so I think people pay attention especially to your activity and wisdom shared from personal experience. Would you consider joining me on this journey? Let’s have a DM chat to discuss this! Thanks for considering taking on this role!
#Depression #Anxiety #MentalHealth #ChronicPain #Chronicpainwarrior #Disability #BipolarDisorder #BipolarDepression #Bipolar2Disorder #Bipolar1Disorder
#Stigma #ObsessiveCompulsiveDisorder #ADHD #Autism #Dementia #Addiction #AddictionRecovery #Cancer #TraumaticBrainInjury #BrainInjury #LossOfAParent #Grief #SuicideSurvivors #ChronicFatigueSyndrome #DistractMe #HIVAIDS #longtermsurvivor #ChronicIllness #ChronicPain #MightyQuestions #DownSyndrome #IfYouFeelHopeless #Hope #Deafness #neckpain #BackPain #CongestiveHeartFailure #Migraine #COVID19 #PeripheralNeuropathy #LymeDisease #Diabetes #EatingDisorders #Headache #Stroke #help #BorderlinePersonalityDisorder #Fibromyalgia #Disability #thankful #grateful #EatingDisorders #CocaineDependence #drugaddict #alcoholic #PTSD #EmotionalHealth #physicalhealth PainAcceptance #Acceptance #relief #Selflove #MightyMinute #MentalHealthHero #TheMighty #RareDisease #MightyTogether
Thank you for joining us as we support each other with our multiple health challenges! We appreciate you being a part of our community. This group was started with the intention of being a place where members can empathize with each other, find support and offer support to others. We love watching as this has been happening, but we think we can get even stronger! Please consider commenting or responding to other’s posts and responses even more. Even if it’s just a ❤️ or a 👍... or respond with a comment. This really helps us to feel supported and encourages people to post more.
Thank you for joining us on our journey so far and we look forward to getting to know you all better in the future.
Your Multiple Health Challenges Leaders! 💜❤️👍
#MentalHealth #Depression #Anxiety #Disability #ChronicIllness #ChronicPain #Selflove #Selfcare #PTSD #COVID19 #Migraine #ChronicDailyHeadache #BipolarDisorder #Bipolar2Disorder #Bipolar1Disorder #BipolarDepression #Addiction #AddictionRecovery #HIVAIDS #longtermsurvivor #RareDisease #ObsessiveCompulsiveDisorder #ADHD #Fibromyalgia #Cancer #IfYouFeelHopeless #Hope #TheMighty #MightyTogether #MightyMinute #mentalhealthwarrior #Grief #Headache
#RareDisease #Asthma #Suicide #Trauma #DistractMe #CeliacDisease #FunctionalNeurologicalDisorder #EhlersDanlosSyndrome #ParkinsonsDisease #Autism #AlzheimersDisease #Dementia #BrainInjury
3 days of breavement leave is not enough time. I lost my Grandpa on Monday and I had to come back to work today. It isn’t enough time. Yes he was on hospice for the last few months fighting cancer and dementia and yes I knew this was coming but it still isn’t enough time. I’m so god damn angry. It isn’t enough. #angry #Grief #Hospice
Getting older may start to get people worrying about the possible effects of dementia. One can take various steps to reduce the risk of developing this condition.
The number of people diagnosed with dementia is rising along with the aging population worldwide. Unfortunately, the latest drug for this condition, crenezumab, has been ineffective in clinical trials. This leaves many experts and researchers wondering if it’s time to start looking for a new strategy. Instead of treating this condition, they suggest we focus on preventing known risk factors such as untreated high blood pressure, hearing loss, and smoking.
Due to the rising number of people diagnosed with Alzheimer’s, the number of people who will eventually be diagnosed with this condition is expected to reach 14 million by 2060. As researchers try to find a way to slow the disease’s progression, there are various steps that people can take to reduce their risk of developing this condition.
According to psychiatrist Dr. Gill Livingston of University College London and chair of the Lancet Commission on Dementia Prevention, Intervention, and Care, the chair of a commission that studies the prevention and care of dementia, new drugs could be helpful, but they aren’t the only solution.
While there are currently no effective treatments for Alzheimer’s disease and related conditions, there are still various steps that people can take to reduce their risk of developing this condition.
Being More Active
One of the most critical steps people can take to reduce their risk of developing this condition is regularly engaging in regular exercise. According to studies, regular exercise can help lower the risk of Alzheimer’s disease by up to 50%. People already at a moderate fitness level can help maintain their balance and improve their coordination.
Eating a Well Balanced Diet
Getting the proper nutrition is also one of the most important factors people can consider when maintaining their health. A diet low in refined carbs, trans fat, and sugar can help lower their risk of Alzheimer’s disease. High in vegetables, fruits, and omega-3 fats can help prevent the development of inflammation that can damage brain cells.
Keeping Your Brain Active
A very effective way people can consider when it comes to maintaining their brain health is by regularly engaging in learning. Although the exact effects of memory games on the development of Alzheimer’s disease are still unknown, studies have shown that education can improve brain functioning.
Avoid Isolation and Be More Social
One of the most common factors people can forget to consider when maintaining their social connections is isolation. A thriving social life can be challenging for older adults who can no longer drive or are experiencing health concerns. People can improve their social interactions by volunteering at the local senior center or visiting their neighbors regularly.
Get Enough Sleep
Getting enough sleep is also one of the most important factors people can consider when maintaining their brain health. According to studies, getting adequate sleep can help lower the risk of Alzheimer’s disease. One of the most effective ways that people can consider is by setting a bedtime ritual.
Seek Out Calming Activities
When it comes to maintaining their brain health, it’s important for aging people to engage in calming activities. These can include taking a deep breath, singing, reading a good book, and relaxing in a warm bath.
Had an EEG last Thursday. Reason is falls & other symptoms. I know the results can help diagnose dementia , brain tumors & dementia along with other things. My brother died from a brain tumor last month, seizures would mean no driving & loss of independence. Dementia is the most terrifying. I will stockpile meds if I have this. I’ve seen it play out, not for me