My father has been put in a nursing home because, he has CBD he can’t walk, transfer for his wheelchair, his left side of his body is useless, today he had a seizure that was never happened before, he has difficulty swallowing he’s been sick for 3 years that we know off but this last year he has gone downhill so quickly. I’m really fearful he is in the end stage, they have stopped all his speech and, physical therapy it’s like he is in there now waiting to die, it’s so unbarely painful too watch as he was never sick seriously in his life. As his oldest daughter, I feel so useless and, cry every time I, leave he looks like a child in an old mans worn out body and, he is only just turned 69 this summer. Seeing his doctor has stopped all therapy he was getting is this the end? How can this be my heart has been broken for him, I don’t want too see him suffer like this but, selfishly I’m not ready too lose him yet but, he hates the nursing home and, I can’t tell my mom what to do but, it’s been so traumatic, stressful, and depressing for us to see him like this whohe should be enjoying his retirement instead he got something none of us saw coming until 3 years ago when we noticed differences in him now his behavior is even out of character for him he is like a angry child and has lost his ability too have empathy for how it’s affecting us he thinks we are being mean to him we just want him cared for because, my mom and, I have severe back problems and can’t lift or even transfer him she kept him home as long as she could until his last fall rendered him not being able to walk anymore even with physical therapy. so he was hospitalized then his doctors put him in the nursing home for rehab but, he didn’t get better he’s worse now after today having a very scary seizure and, they don’t know why really, I’m fearing it’s coming to the end because, we really don’t know when his symptoms started because, he would always say he’s fine until 3 years ago when his left side if his body he had an alien foot then it quickly got worse monthly it seemed the only thing he hasn’t had is a feeding tube but, has to eat a soft purée diet now, catheterized, and can no longer walk plus his memory has been affected along with his behavior. Does anyone have any advice on what else too expect, or how do you know it’s nearing the end, I’m trying too help my mom realize their is no good put come and, the end maybe closer than any of us are ready for but, emotionally I’m trying to prepare because, my poor father has no quality of life anymore it’s so heartbreaking! Any advice from someone who had a loved one pass away from this terrible disease would be greatly appreciated. 🙏🏻🙏🏻💜
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Purple_peace
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My son died May 4, 2017, just barely turning 55 years old, from PSP. His symptoms first appeared March 2014....double vision and slurred speech. His 2nd bout of aspiration pneumonia (March 2017) motivated him to have a PEG installed. He died 5 weeks later. My son had a seizure a week before he died. After the seizure he lost all speech and communicated with his thumb and animated gestures.
Death comes when it comes. In the meantime (one week? One month? One year? etc) I would suggest that each time you see your dad you tell him what a wonderful father he has been....be specific of times you remember where you have fond memories. Tell him how much you love him and how much you will miss him. Tell him how grateful you are that you got to be his daughter. I would also tell your mom what a great job she had done taking care of your dad...that you know the decisions she had made has been for the sake of your dad and many did not look easy.
I’m so sorry for your loss, that’s a parent’s worst nightmare having a child wether grown or young die before their parents. Again I’m so sorry bless you for your advice, I will do what you have said before my dad doesn’t remember who, I am anymore! It’s just so hard no matter how much, I have known since his diagnosis what the outcome was going too, be it’s mentally crippled me, I was a certified medical Assistant in a Hospital for many years, I’m 47 years old and, I have spent the past 20 years a chronic pain patient at a Pain Clinic because, of a car accident, I was the passenger hit head on the air bag forever ruined my neck, plus permanent nerve damage in my left arm and,hand then Fibromyalgia because of severe spinal trama, with severe migraines, I thought at the age of 27 years old when I, was told that I would have to be taken care of by a pain clinic for the rest of my life because my surgery was considered a failed surgery because, of the permanent nerve damage I, had suffered the nerve was compressed for two long so it died, Then dealing with fibromyalgia from severe spinal trauma and, severe migraines and,continuing to have disc problems in my neck and, back I, have been getting epidurals for 20 years in my neck & back, along with other nerve blocks and, many different other types of alternative pain management therapies to Manage my pain but, as the past 20 years have gone by my body constantly is in pain and, managing my physical pain is getting harder now, but along I, continued to work raise my 3 children then to have the rock of my family be struck with a terrible illness that there is nothing you can do me being a medical professional it has really hit me hard, I have done research on clinical trials but, my dad is too far gone now it’s terribly frustrating and, heartbreaking all at the same time. I’m praying for God to give me strength when the time comes to be able too hold the family together but, with this being my father I’m not sure I,can this is just do much to deal with especially when half the time I’m not well myself anymore. Thank you for your time and, advice. Blessings too you and yours 🙏🏻🙏🏻💜
I was about to close my computer when your message arrived.
I am sorry for all you have been through.....sometimes I believe that past trauma gives us strength for present life situations. If we got past the last challenges we have more confidence to handle future ones.
There is a book I bought my son in 2006. He was 44 years old. Ironic that I did. My son, except for a bout of bronchitis was always healthy....never getting colds or flues, etc. The book can be gotten on Amazon.com. It's called WHAT IS DEATH? by Etan Boritzer. I took it out and read it to him during that week that he died. You mentioned that you have 3 children, perhaps it might benefit them and you and to read the book and elicit responses from them and from you.
My son was highly educated....BA from UCLA in music, a Law degree from UC Berkley, passing the California bar. I mention this because the book appears to be a children's books, and yet it was very helpful to us.
I will get the book for me and, my kids plus, get a copy for my mom she is so stressed we all are, this is one of the most difficult things, to try too understand, comprehend, which I, know you understand all too we unfortunately. It’s still sad why is it people who have so much to contribute too, the world are taken way to soon, you must have been so proud of your son, the only comfort of death at such a young age is that “God” must have a bigger plan that we just don’t know about for special people such as your son. Thank you so much you have been a help to me. Bless you 🙏🏻💜
I am going out the door to visit my sister in Texas (I am in Los Angeles). I do not access email while there.
I would recommend that you buy ONE book, and read it out loud to your kids and mom, hopefully together, but not necessary. It will elicit conversation. It's a very affirming book. If, after you have gotten it, and feel you want to buy individual books for others....that is an option. The point of my recommendation is to open dialogue on the upcoming death of your dad. It is beautifully illustrated. It is NOT authoritative in directing beliefs....it starts with "WHAT IS DEATH? DOES ANYONE REALLY KNOW THE ANSWER TO THAT QUESTION? IS DEATH THE END OF EVERYTHING WE KNOW ABOUT IN LIFE? .............
Books and poems speak differently to what we bring to what we are reading. I suggest you get the book before gifting it to others. I LOVED the book and recommend it to many. For me and for my son, it was very comforting.
very sorry for your lost that is why i am going to have a living will so they know what i want they need to know my wishes . how i want my life to end connect to now machine and no respirator , that is what i want when is time , don't prolong my life , let me go , i know is hard but is the way i want to go.
I would suggest talking to the doctor and see what his thoughts are about bringing hospice care in now. Hospice care doesn't mean the end is near, my Aunt was under hospice care for 11 months. They may be able to offer services easier then the nursing home can. The two entities, hospice and nursing home, will coordinate care and your dad will get a bit more 1-on-1 care.
Dad had CBD, Dx in Jan 2016 and showed signs 3.5-4 years prior. He passed away peacefully last week. He had hospice care for 7 weeks.....
My condolences to you. I am having trouble with this device so have maybe missed other things? Your poor Dad, may he rest in peace. So very sad for you.
So very sorry to hear your tale. Your life is difficult indeed. I know you and your Mom might want to or feel you should take care of your Dad but it would kill you both!
When your Dad says nasty things it is not him saying it. It is the CBD. You have been given very good advice by others. Talk to him and tell him how much you love him. Your Mom should do this too. It will be a great comfort to him and to both of you when he is gone. If they are removing medication then time to get hospice involved. Keep in touch. You will get through this!
Oh my, what a story. As I was reading it, I thought it could be my post from the past. I am so sorry your family is going through this and your other circumstances make it more difficult. My heart goes out to you.
To try to condense our story, my husband was diagnosed with CBD 2 years before he passed away. 8 mos before his death he fell down the stairs, was hospitalized, rehabed, then transferred to a nursing home (with 2 visits to geriatric psyche units for aggressiveness. He was the most mild mannered man ever). In his last two weeks, he was sent to the hospital for dehydration, was not eating or drinking and was basically staring into space, nonreactive.
In the hospital, after hydration, he came back to us, sitting up in bed, joking, eating like a horse. When it was time for discharge and they removed the IV, he immediately returned to the previous condition.
I was advised to consider hospice care. Since I knew what he wanted and did not want, I took that step. He lasted 9 days.
I hope you take the suggestions offered above and talk to your dad. The hardest thing I did was to tell him it was OK to go, that we will be alright, because I didn't believe it from my heart but knew I must give him my blessing to let go. I did not want him to suffer any longer either.
Every case is different and progress differently so this is only my experience. And in the end, he had been to 3 excellent neurologists, all giving CBD as the diagnosis. He had donated his brain for research and when the autopsy results came back, gross exam was CBD but microscopic was Lewy Body Dementia with late stage Alzheimer's. All symptoms were for CBD. You just can't know for sure until they biopsy. Bless you and your family. We'll be here for you.
Omg, thank you all for your stories in dealing with this terrible disease, it’s the worst thing anyone can have it’s a cruel death sentence with no treatment, medications too prolong the progression of the disease and, more importantly no cure. I’m going too talk to my mom about my Dad’s brain being donated to science because, If more people do it then maybe someday this won’t be a rare untreatable or incureable disease and, others can be spared from loosing loved ones to this terrible illness! Thank you and, bless you all 🙏🏻💜
We had a similar experience with CBD. Only it took 5 years until he fell and landed in the hospital. He wasn’t eating enough and we were given the option for a feeding tube. This saved his life. He was malnourished and would have died. This is a HUGE decision and one that the most of the medical field encourage no feeding tube. I ( his wife) made the decision to put the feeding tube in knowing my husband. He was pretty out of it during this time.
I have since asked him many times if this is what he wanted and he definitely says Yes!!!. But, don’t get me wrong, it is a hard road back. Keppra has keep the seizures at bay and we continue to demand ( to the physical therapists)that he walk and get some occupational therapy. We are in a pace program that helps with this a little but it has mainly been my children and I who keep him walking and we have excellent CNA’s who CARE. We have support from other family, but it weans after awhile. But we now are in his 11th year and he has gained weight and making sure he does not fall is crucial! We have learned sooo much and we are happy we made the decision to have the feeding tube. Otherwise, the disease is wickedly quick to show itself. I just couldn’t let my husband die of malnutrition and that what was happening. It just seems archaic! Go with whatever you think he would want, if you are able to support your mother with the Caretaking. Make sure you have people who will support you and give you a break. It is not for everyone! And most of the feedback from most hospitals and nursing homes is that we should just “ let him go”. Trouble with that is, he wants to live! We will support him as long as he continues to want to fight. God bless and keep you. Whatever decision you make is the right one for your family. I just wanted to let you know that there is support out there if you take the road less traveled.
going through this terrible disease, unfortunately my Dad is already unable to walk anymore he had fallen daily when he was home with my mom. The last time he fell he was hospitalized then sent to the nursing home for rehabilitation but, it didn’t help him, after PT, speed therapy, Occupational Therapy, after 2 months they stopped all his services because, they said he wasn’t making any progress which was apparent too us as well. His left side is completely imoble and, he has to eat soft diet because, of difficulty swallowing, he is also cathiterized because, of no bladder control anymore, now seizures it’s so upsetting because, we Are not even sure how long he has had the disease he has been diagnosed three years ago but has quickly kind of down here in the past two years .Knowing my father he was never sick in his life, seriously anyway he was probably in someway symptomatic but, he would had never would have told any of us because that’s the he was. He is only 69 years old and he is like a 90 year old man so heartbreaking. The seizures are the new piece that has happened this week and are sending him for an EEG I’m not really sure what other medication they won’t put him on to help control the seizures. I’m just overwhelmed as my mom is too! Thanks for your advice Everybody’s story and advice helps me to try to think about what to do next I, wish that we were talking We were all communicating about something happy on this site but, unfortunately life isn’t fare! That’s one thing I, have learned because, my Dad was the kindest, hard working man, I have ever known. Nobody deserves their life too end like this! Blessings too all of you🙏🏻💜
I am so very sorry to hear about your father. It is a sad, cruel and unfair disease.
My husband died of CBD this past July. He had the usual progression of symptoms: losing movement, coordination, strength on one side ("alien" left side) language, eventually all speech, losing spatial ability, some cognition (always retained memory though) and simply "brain strength" until he was tired doing the simplest of things like getting out of bed, getting dressed (with help) bathed (with total help) eating (with help)....he was ready to crash and sleep after each of these taxing episodes.
The heartbreaking thing is he was cognitively intact enough to realize what he was losing, and to be so very disappointed in how life was turning out. It is a hard, painful, unfair disease. I wish you all the strength you can have, to meet your father, love him, talk with him, remind him of his achievements, tell him how much he matters and mattered in your and others lives. Hug him, kiss him, - give him all the love he can take.
You will be glad you did, when he is gone.
All the best for this heartbreaking time in your life.
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