Welcome to My Caregiving Blog

As a caregiver for my mom who has Alzheimer's and not being able to work its only a while before homelessness kicks in for me. Good times in America.

My husband, of 21 years at that time, had a massive brain tumor removed in October 2010. He was left totally disabled. Immediately, our family lost the main financial provider, business manager and head of household. I lost my best friend, lover and confidante. I became his caregiver while raising a 13 year old son, running a household, managing all of the finances on very little money, pastoring a church and pursuing my Master's Degree. It's been over 6 years and I am dealing with my own health issues and major caretaker burnout. Our son is now away at college and I've finished my degree and pastor two United Methodist Churches. We don't have a lot of family support and we live in an area where we don't know a lot of people. My husband's health has improved and he is able to stay home alone and walk with a walker. He is a highly educated person and all of his knowledge is intact but he struggles with processing information and making the smallest decisions. In many ways he still requires a lot of care; however, I'm thankful that he is a very pleasant person and although he cries easily, he is not mean or easily frustrated. Yet, it still is a lot to handle and I want to know how others handle being a caretaker for years without support.

I have a severe TBI. I have never had caregiving services! After divorce my child and I moved in with my mother because I was unable to care for myself nor able to care for a 8 year old. It was a nightmare! And 5 months later she and her husband gave me 30 days to get out! It was in writing in my divorce papers why I moved there. Are there disability laws regarding this? I'm doing prep work for meeting with my TBI lawyer . Thanks !

My thirty five year old daughter was in a car accident over a decade ago and while the physical scares have healed she is a mess. My wife and I noticed a behavior change immediately and hardly recognized her as the same person. I have tried to identify her symptoms with other P.C.S. victims so I could know what to expect but the only thing I can conclude is that there is no mold. While some of the symptoms have passed she still retains many emotional and behavioral problems. She has pushed her whole family aside but insist we abandoned her. Incidents in the past while having a kernel of truth are embellished beyond belief and filled in with imaginary details that never happened that she truly believes. For a decade her mother and I watched her children, took them to school, picked them up from school, babysit so she could work or have a night out with her husband and on and on. We have done more for her than the rest of our children combined by a factor of at least 20 times. Her complaint? We were never there for her. If you get on the wrong side of her she is the most hateful of persons and tries to hurt you where she believes you are the most vulnerable. I would be interested if there is anyone out there that has  experienced something similar to this so long after the T.B.I.?    

I am so Happy to .find this place. Our whole life has changed since February 2014. We are now 46 years Old. My husband also had a ruptured aneurysm. It took 2 weeks to get him to the er. They transferred him immediately to a larger hospital and did surgery to clip his aneurysm. Two years prior he had an AAA. Abdominal Aortic Repair... Of his first aneurysm. Since then, he had bee. Diagnosed with 7 more in his body. I don't know how much more I can handle. My 92 year old great uncle also lives with us. I am so stressed. My husband and uncle have recently started going to an adult daycare center 3 days a week. That really has helped. There is nobody Who can or will understand. My husband's family doesn't help, but have started being very judgemental of me. My husband finally got his disability which 130$ goes to his 11 year old son for Child Support. So we are living on 600 $ per month. I can't work because my husband requires 24 /7 care. He can never be left alone. I am his guardian.

Hello  All!! Just need to tell everyone that reading your comments helps me tonight as I am having trouble with my son not listening to me anymore, when I try to do my best for him and have. That is my struggle at this time in my life, He tries so hard to be accepted by others, he is a follower and has so much trouble with wisdom skills, to know who is a user and abuser and who is a good human being who cares, I have worried for many years now when he went out with friends if he was to nice how they would react to him as people can not see his injury,  and it did not take long! People are not as friendly as they use to be and if he shows love or happy emotion he is shunned for it, yes a sad world we live in today, I told him people do not like anyone putting an arm around someone  anymore, as people place themselves in one own box, which is know as ones space. Now it can works for some if you are famous, important figure, rich or etc. again sad world we live in, I myself taught him values and manners and to love, and that he has mastered but at a high expense to himself, where as  folks think he is different and do not want him as a friend, and he does not smoke, do drugs, or drink, he did smoke and drink before but conquered the smoking, and drinking was out as he started taking seizures after twenty three years. Coming out of a 22 day coma at age 7 his doctor told him he could land back in one,  so no more alcohol ever!!. He said the seizures were caused from alcohol not working with scar tissue. So I have to be very thankful he such a great person and strong willed, but in saying that when someone makes fun of him, which happens a lot or makes promises to him and not keep them, big ones that get him so excited and then just forget about him it breaks my heart over and over. They talk behind his back and etc. Why do they do this??? Is this just the beast in nature, or evil against good?? I use to stand up for him when he was younger and then I had to loosen the strings and take him out of that glass bottle so he could face this world head on and I had to see what would happen. So far I am not impressed, older folks who know better make fun of him as he can not think fast with comebacks as anyone could, most of them on drugs I think which makes them quicker thinkers and have no patients for someone who can not keep up, losers I call them! but this is wrong of me to say, as they are also just trying to find their place in this messed up world. My son is now 33 and he still comes to me when someone mocks him, bullies him etc., and every time he does it upset's me to know end, and my hands are tied now and if I said anything to them it would make him a mommy boy. I tell him to stay away from negative people, even if he only goes to volunteer at our local legion or go to a dance they may have as he is lonely, and boarded and tries so hard to fit in, and he is loved by many as one of the sweetest guys around, but if he messes up something by a simple mistake then they jump on him, for an example he orders a water or pop instead of alcohol and is told he is cheep and hard on the bar tab as he does not drink, so if he drank and gambled then he would be excepted, what happened to our Royal Legions?? He volunteers for God sake!! He is told he is gay which he is not, etc. etc. picked on all the time by elders who are suppose to be in charge and be mentors, say nothing but join in with the bullies, if not outside smoking dope with them, so he will come home all upset again and then he will forgive and forget and it starts all over again this is very hard on me to watch and is so upsetting, all I see is he is so lonely for friends its just so sad, see we live in a small village and not much here for him, How he is dealing with this lately is he will come home and post his pomes over his face book just to feel better. His work is wonderful and that is how he would deal with rejection in earlier years by writing about it, taking bad things and turning into good things. In relationships girls have used him and then dumped him. Heartbreaking again, but better than him having children and have this happen to him then, so I am thankful for that. I love my son to the moon and back and I am very proud of him for who he is and understand what a brain injury does to someone as lived it for over 26 years. Believe me I hear all of your comments and they so relate to me and I have had hard times also, struggling just to survive no help, no family, and no husband. I worry every day what will become of my son if I die,  as I am now in my sixties and on borrowed time as they say, I pray every night that he will find a caring young women who can respect his disability and love him for who he is an old soul with a big heart!! So this is just a touch of my life, but what kept me strong all those years was that someone else always has it worse off than me.!! My biggest fight now is the system and how corrupt, heartless and cruel this planet has become, its in such a shameful state!!  

Hello, March 16th...I have not run into that problem since Hugh is back to work and has been for some time. I do know a family struggling with this same issue. I'll have to look into this more. Sending best wishes and gratitude for the amazing work you do every day! Rosemary

So excited for your Rosemary! This new blog is another wonderful way you are able to inspire and inform so many other care-givers who are going through what you have. Thanks for bringing your light and life to others!

The strength of caregivers who strive every day from a place of love and compassion with very little help blows me away. Thank you for sharing your stories. It's my hope that by sharing these stories, we can raise awareness, funds, and services so no one falls through the cracks anymore. Dream big. Love strong.

Hi- I am above all in my life, my son\'s caregiver. He has Chronic Traumatic Encephalopothy (CTE),permanent frontal lobe damage, multiple concussive syndrome- you get the picture. The famous athletes who have this disease are committing suicide at growing rates, which my son sees and has raised incredible awareness of this disease in recent years. We\'ve been dealing with this for 9 yrs- 27 concussions ago, our life was different. I don\'t have spousal support. It became too hard early on for his dad and sister, so I\'m his advocate. Many surgeries, procedures, doctors around the country, alternative treatements, traditional treatments, knowing research isn\'t there with a cure- it\'s all very exhausting. I have family, friends and thank goodness, a job where I am supported to be the best caregiver I can be but it is absolutely exhausting. His depression is so hard to fight. When he has tried to commit suicide twice in the past 1.5 years and I have spent all I have supporting him, work 2-3 jobs and do all I can each day to talk to him when he says \"it isn\'t a matter of IF I will commit suicide, it\'s WHEN\"...well, it\'s just so hard to overcome that depression. And, part of me totally understands his desire to be pain free and not a ginea pig to the doctors he sees. It\'s just insane some days! No one knows how I feel, really. You may have some idea, but I do feel alone in this even though my family really tries. This just stinks! I\'m sorry for your pain and for anyone who is going through this. It\'s a silent disease. May we all continue with strength and courage, and most of all love.

i too am a caregiver for my husband. and we ened up homeless out of everything because of money so i really know the stress of not only being a caregiver but taking care of homelessness at the same time. now we have a small second floor apartment we had to take whatever we could afford but as you might know stairs are not his best friend so i deal will falls and such.fear of him hitting his head again. we both live on disablity and let me tell you it is hard but we do it month after month.we dont get rent help by the state which we do qulify for but i have fought the system for so long im to tired to even try for help anymore. as i watch some people abuse the states help my anger gets the best of me but once again im thankful we have a home even though it does not meet his needs we cope. we live in a community of no tbi resorces. so our days are long and empty. no respite for him or social interactions anymore as people just stopped coming around because they cant cope with tbi so hes lost all friends and just sits home in front of the tv and i do all i can to entertain him. tough it is and im burnt out. totally burnt out. lost for lack of my own social life because my life has become his. can you understand that. i do go to group for some sopport but like i said it has nothing to do with being a caregiver of tbi but it helps some.i wont give up and maybe some day we will have the right things we need for him to want to strive again. i live in northern vermont.cold right now so we dont get out for our walks. my name is linda hartigan. thanks for letting me vent and sorry about my spelling. sending my prayers out to you and your family. you are movtivated as i was but i have lost all that from being pushed down by the cruel system and lack of help here.