According to The Associated Press, dozens of Summitt's former Tennessee players and coaches came to Knoxville over the weekend to say their final goodbyes to the winningest coach in Division I college basketball history. Yet last year nearly , people in the United States died because of it. See our explainers here. While the disease devastates the brain, it does not kill you. She is in a good nursing home, but I find it hard to cope every time after I see her.
Its hard to know what she does or does not feel. She lost most of her speech function as a result of the strokes. What a nightmare this disease is.
So much is unknown, I wish I could help her. Two diseases we have known about for more than a century, I only wish I could have finished your story, because my Mom, and her Mom before her battled; my Mom for 17 yrs my grandmom for I still cry daily after a yr loosing her about the suffering she endured.
This is a Brain disease, that has no meds, no survivors, no treatment, and no hope. I find it so very upsetting that this disease robs a person of everything, dignity, feelings, speech, swallowing and the list goes on and on. She has gone down hill rapidly.
She has lost two stone. Very rare has lucid moments, they get her up but she just slumps in her chair and sleeps most of the time. She is in terrible pain in her leg and when they hoist her up she cries out as it hurts her. She has had numerous urine infections and been hospitalised, she has been unresponsive twice and the doctor said it was something in her neck and she has nearly died twice due to lack of fluids. We knew we were physically and emotionally able to do this in the beginning, but I must admit I am envious of all who are able to simply go and sit with or visit their loved ones; able to pat their hand lovingly, lament their loss, but go home to a life and recoup before next visit.
Your story saddens me, I, too am an RN, taking care of my husband, Alz. I never doubted my abilities but it is a LOT! He is now bedbound, stopped eating but still drinking a little, losing his speech. Was a brilliant Astro-physicist, taught university for 45 years.
I am so incredibly sad, must carry on to help him to the end of his journey. My yo mother with 10 yr hx of Alzheimers been through most all of the stages mentioned in prior posts lost in time, purpose, and function.
She has moderate-severe macular degeneration and is virtually deaf even with hearing aids further adding to what I can only imagine is like existing in some dark void; she can hear only by talking directly into her R ear.
The last 2 yrs have presented further challenges with being confined to a wheelchair, OCD types of behavior, paranoia, and occas. My only consolation is that she will die with the people that love her most at her side. And 2 or 3 days later she dials my number asking me why her husband has my number and then hangsup sad indeed.
I look forward to your newsletters! BestR, Tina Cullum tcullum ndx-discern. All comments are relevant to our experience of Dad whom passed on on 21 July. He was tested and not Covid positive. What broke the rest of us Sisters and Mother is the fact that we could never see our Father or touch him from 26 March when South Africa went in lock down.
We are at loss and full of self blaming and we had no control. I feel you. May God heal our hearts without regrets and bring comfort to our love ones.
After attempting to get through this article, I had to stop due to floods of tears interrupting me. There should be a long space or a long silence here. I thought this was truly a sensitive,but yet awareness and a abundance of the know and very factual story.
My father had it and crossed over peacefully. I thank God for that. Thats why I do what I feel is my passion. Elderly home care. Its very rewarding to me to know what I know now and to prepare or help with family members. It was very detailed as well loving….. May your mother RIP.. Watching my mother suffer from AD the past 15 years is a myriad of contradictory emotions. Just as this story and all of the comments are soothing and comforting, yet terrifying at the same time.
You are all so brave for sharing. My mom was diagnosed early in her disease… she was completely aware of her memory decline. My parents, my sister and I are within blocks of eachother, thankfully, and can support one another greatly. My father is sharp as ever mentally and took primary care of my mom in their home for 13 years. Two years ago, he accepted that he needed help…he was lifting her, changing her many times a day, bathing her ,etc. He ended up needing back surgery.
They are together in a senior living environment. It is costing him his entire life savings to do this. Watching my beautiful mother fade away piece by piece, or watching my Dad losing his love of 60 years.
Even though he pays for this lifestyle, he continues to advocate for her and do literally everything for her by himself. He does not feel anyone can take care of her properly. Even though we are all nearby and see them often, my dad feels complete guilt doing anything away from or without her.
He is lonely and depressed and does not participate in any activities, groups, classes that are offered to him. My sister and I attended a wonderful support group for 3 months but my dad would not go …. This disease is slowly breaking down our entire family. But I know we are not. We visit them often and my dad still brings my mom over for dinners but it is getting very, very difficult. Some days my mother is very unpleasant and I feel such guilt that I dont want to be around her.
We have asked these questions so many times about what to expect at the end, what exactly will happen, how long will it take, etc. The answers are horrifying. Aside from AD, my mom is technically very healthy overall. Some days she is angry and combative and doesnt talk or interact at all. Other days, she laughs, reads words and runs around hugging everyone and saying she loves them. The fluctuations are radical and confusing to us all.
How long can this go on? It is like a never ending roller coaster. My heart and prayers go out to everyone on this blog…everyone that has faced this disease with a loved one. I get comfort and solace in reading and learning from those who have experienced this and are willing to share their hearts and their journeys with others.
You give me hope that even during the most difficult times, there is love and joy yet to come with my mom. Today is Mothers Day. Thank you all for your stories and support!
Thank you for writing. My Mother died today. She had been on a long slow decline since breaking her hip in , and my brother and I have been taking care of her in her home. I worked out of state for six years to qualify for a pension I knew I and my brother would need, she cried hearing my decision and I came back every weekend, doctor or nurse visit, and when I retired moved home again.
I feel so much guilt and shame and I imagine that not being able to take care of parents at home causes the same feelings in others, athough we do what we have to do.
I was able to have the conversations I would regret not having nonetheless. Your Mother has a lot to be proud of in you. Yes, hearing. I get information and give input through her daughters.
Her husband despises mine for petty reasons and mine reciprocates and refuses me any contact with her. We moved closer to our home state in part to be nearer to her. He is still mostly in denial, yet refuses my help. So I say to all on this trip, put aside your differences and live for what you have now. Do what you can, when you can and lose the guilt. What bothers me the most is watching myself decline. Mean while it feels like watching a movie of myself.
How do you feel? I will be brave and do what it takes to care for my lovely husband ,we have been married for 53 years and I love him dearly….. Sending you strength and love. My mom found cannabis oil very helpful as well as coconut milk based protein shakes. Coconut oil converts to ketones in your liver to feed the brain, so it shrinks less, and slower. Cannabis oil helps with anxiety, sleep, mood and attitude. Take good care, Frank. Thank you so much for this wonderful article! I have also Accepted that Inevitability, and am at peace.
Thanks be to God. This was an amazing article, albeit heart wrenching. I was diagnosed with pancreatic cancer 4 years ago. I had the most complicated surgery there is, even more so than a heart transplant. Whipple surgery…10 hrs. My digestive tract is a mess And basically keeps me housebound.
I also married a second time to someone who is non sexual, emotionally vacant and distant. I had hoped that with our separation would come a chance to meet and enjoy a less lonely life with someone more like myself.
Then the diagnosis. I am in tearful as I write this knowing that I can continue to go to the gym, take my ginko biloba and yet the end will come….. As an adopted child even at 60, it was the most horrendous experience and I wish it on nobody.
I would wish it on nobody. Definitely very important if you have a close family member sufferint this illness essential to document ourselves.
Courage to all. Mr Ettenberg. I just read your response, and I agree with what you shared percent. I am sitting at my desk at work, in an office that I share with another. I struggled to maintain my composure during my reading, which I did, but it still crushed me inside.
You see, I, like many experienced this first hand with a loved one. Very similar set of circumstances for me. I do not know the conclusive findings yet.
All I can do is pray that they are negative for the sake of my family. Jasja, I thank you so very much. God bless you Jasja, and your family as well. Yes, thank you for sharing your personal journey! It has variations of progression for each individual. My dad died of complications due to Parkinsons. The complications were respiratory failure due to the fact that he lost the ability to swallow. Although he was on a thickened liquid diet towards the end, the fluids still found their way down the wrong pipe and wound up in his lungs.
Aspirated pneumonia sent him to the hospital a few times. His lungs finally gave out one night and he drew his last breath. He wanted nature to take its course. It did. No more suffering. TY for your story. Thank you for what you have written Very helpful. My husband has had several bouts of aspirated pneumonia and has his drinks thickened and food pureed.
He has mixed dementia Vascular and Alzheimers. Some good days some not such good days. May your father Rest in Peace and may you and your family be comforted.
My mum stop eating and drinking for 10 days after developing a fever and lung infection probably from choking. She battled this disease for the past 15 years. She got this disease at a rare age of 50 only. Due to Covid19, we are not allow to visit her. We can only wait till the final moments and hospital will give the green light.
Today video call I could see her moaning in pain. I not sure what to do now. This is really saddening as I am in another country now and might not be able to accompany her on final journey. When I reach, I need to stay home for 14 days which might be too late. I m at a lost and can only pray to God that Covid19 be gone soon. Sue thanks for sharing. I am care giver for my dad.
Was in the hospital 2 weeks ago because of aspirating and pneumonia. He has a slight fever and coughing, breathing hard! I leave the room and cry! His birthday is Wednesday the 24th of April! Nurse comes in the morning. Thanks for listening! I have spent lots of hours thinking about what will happen to him but reading your story has helped me to understand the progression of this awful disease.
Thank you x. Thank you for your story. It has given me much insight. May your mom rest in peace. She was a beautiful soul. And lucky to have such a warm loving family by her side through the whole process. I cant stop crying after reading your story. As a granddaughter of Alzhemier sufferer, I treasured every moment when i m with her before my lost.
I clearly remember every single moment that I visited her. She cant remember me, just smile to me as im a stranger yet its killing me to respond to her as im not hurt.
I say that I love her at all the time, n cry silently whenever i have to leave. Yet, I still can say goodbye to her when she passed away.
I believe that god takes every happy angel to the heaven n she will be one of the angel. It is still hurting whenever I think of her that is why i do research project on dietetics about dementia in my degree of dietetics. I just wanna give hopes to other patients n their families as I know how bad it can be to feel hopeless and helpless. I hope next time when i think of her it will hurt less and less and till one day it will be bearable.
I felt that I was not patient enough, that had I kept her at home longer that she would not have suffered and died as she did. I was alone with an 8 year old child and working full time. It was hard. I was there, holding her hand watching her breathe her last breath and watching her heart struggle to keep beating and eventually stopping altogether.
Please do not blame yourself. This disease advances at its own pace and you did your best. Probably beyond your best, with all your obligations. Take care of yourself and your family without guilt. Lisa, I cannot imagine how you cared for your mother, worked and attended to a young child alone. You truly did your best. My dad 86 and I cared for my mom at home with the help of a part-time caregiver the last 7 months. My mom left us from home, much as Ms. Kotterman described, minus the infection and with a much quicker timeline at the very end.
If I had read it, perhaps we would have been a little less clumsy in recognizing that the end had come—certainly no one told us exactly what organ failure looks like—but my father and I and one grandson were with her when she left us just over 2 weeks ago. Home or care home, the end comes, as it will. I hope you will experience peace as your mother surely felt your love and devotion as you cared for her. This is a horrid condition I have cried bucket loads of tears and my wife who is 75 this year was only diagnosed January I just read this and cried.
As I was reading this it was like I was walking in your shoes my moms last days were the same yet different, if that makes any sense. Some of the same issues and behaviors , some were worse. I am a registered nurse and nothing I have experienced would have prepared me for this journey.
My father stopped eating and drinking 5 days ago. We are living your story right now. This is so hard…thankful for my sisters and my mother and my sweet dad who has always been there for me. Dementia is an umbrella word , there are various diseases under this umbrella i.
Death, even if expected, is always full of pain, for those of us who are left to grieve. I wish you all peace in your heart. Such a cruel disease, we loose them twice. Thanks for sharing. In my Dad died at home much the same way.
I relate well to what you have detailed out. After all this time I still remember the entire experience and how it impacted our family for years before and after. As you state I cried tears during the years he diminished and faded away that losing him was a relief knowing he was no longer stuck inside his shell of a body. You must experience this disease to truly understand the devastation to the body and brain. I lost my husband to a form of Dementia.
I also had friends question how you die from that. He always knew us. I held him in his last breath, son holding his hand. Going through this now with my mom. Your story rang many bells. Right now I can get her engaged by asking her to tell me stories of when she was young, playing music that she loved, and showing her pictures of her grandchildren and great grandchildren.
Yesterday she brought me to tears with just one question. She asked me if she was a good mom. She has always been my role model and hero. All 6 of us became productive people that have our own children that are doing amazing! When she asked me that I wanted to crumple and cry buckets! But what I said to her was not only was she a good mom, but she taught me what it means to be a parent. And I thanked her. I see the progression this disease is having on her.
And it breaks my heart. I thank you so much for your writing about your mother. My prayers are with you and your family. Thank you so much Jasja for telling us about your mother. She no longer speaks or walks she had no idea who I was. She had the same blisters on her feet but she is still alive. I do not understand why God lets her to continue suffering. Irene, My sweet mother passed away on June 11 of this year. You are not alone in your pain. Prayers to you and your mother. Hello Irene, my mother almost 96 was diagnosed with alzheimers bck in 7 years ago.
We knew there was something wrong two years earlier. Mum is now not swallowing or eating that pureed stuff they call food, staring into space, not walking and need help with everything.
All this took a sudden downward drop just 2 weeks ago after she had several falls and was admitted into hospital. I believe our suffering here on earth is nothing compared with the Glory and Love and Light we shall all share with HIM.
I will pray for you. Not sure when my mum will go.. This is so well done. It is so hard to watch this disease rob a person of everything both physically and emotionally. I cried as I read this article. My husband went in an almost identical pattern. He has a UTI which required hospitalization. During the course of antibiotics he lost his appetite and never regained it. I began to notice he would get strangled when given liquids, so thickening was added. Ice cream was the only thing we could get him to accept.
Hospice was called in and he was moved to a nursing home. I spent all my time with him for the last five days of his life, only going home to sleep and returning to my watch. He was not aware I was there as best as I could tell, but the nurses assured me he could hear me. I used that time to let him know how much he was loved. My pastor came to visit on his last day and told me to give my husband permission to leave, and to assure him I would be all right. I did that at about P.
I had been singing hymns to him in his last hour. This helps me to know what to expect and to prepare the best I can. I ams so glad your whole family could be there for your mom. Thank you for sharing this journey with your family. We have two loved ones with the disease, my MIL and my Aunt. Your story and the video with Deborah are very educational and eye opening.
Thank you for sharing this very, very intimate story. We have been walking the dementia path with my mother since We do everything we can to connect with her and make her feel loved. Baby calmed her agitation and gives her a purpose. My mother is constantly confused and sometimes nonresponsive, but she still can feel and give Love. Thank you for sharing your story. I know that it will educate and offer peace to so many others that have the opportunity to read it. We should encourage family and friends to visit while the times are good.
On a positive note we were Blessed to be at our Mothers side when she passed after a long illness. She was always very conciouncious of our lives, schedules and family time. It seemed as if she waited for my younger Sister to get her Husband off to work and waited for her to Aricept to say her goodbyes before she left us that morning.
Some find it hard to understand that we all felt that it was a beautiful passing but it was. She was surrounded by our Dad married for 52 years to the love of his life and 3 of her Daughters that lived in town. As she left this world we told her to take our love with her and to share it with Grandma, Grandpa and cherished other loved ones.
She took her last breath so peacefully and we all knew that she would no longer suffer from Pulmonary Fibrosis and that her next breath would be in Heaven surrounded by her parents her daughter that she lost at the age of 2 and many other loved ones she longed to see again.
Knowing that we all had much peace in the days that followed. Many Prayers to all that are going through or have gone through the loss of their loved ones.
God Bless, Lorri. But you know what as long as I know I have done everything I am capable of for my mum. Everyone understands a bit more when they lose there family. We have been dealing with mt Mom with this horrible disease for over 8 years now and it seems that my mothers siblings that are younger than her only come to see her once a year if that. I guess they afraid they will catch it or something. I always thought that this is what family was for but was very wrong.
Now that Mom is getting to the point of many hospital stays and the constant worry that food will get caught in her lungs and aspiration and she has lost over 20 lbs over the last several weeks that now they will decide to see her to make themselves feel better. I am sorry but that is unacceptable to me. We had to make a lot of very difficult decisions and never even worried if they knew what was going on because they never even called to see how she was doing either. What a disgrace.
I believe family is family and I know in my heart I would be there for my family if this ever happened to them but people are very self centered and afraid. I believe they are the ones that have to live with themselves over this not me or my siblings.
Right now, my mom is in her final days, hours, whatever the case may be. I look at her laying in her bed almost lifeless, and am having trouble reconciling the fact that this is the same women who, just a few months ago, seemed full of life. The disease had progressed but she was up, still walking with help, had lots of laughter.
I just pray that God will release her and take her home, but in the meantime, it is comforting that she is unaware of what is happening. It seems very cruel for us though.
I am an RN and have cared for many patients with AD over the course of my career. I recently retired to care for my new granddaughter while my daughter works. I have just been diagnosed with mild cognitive impairment. I know that it is very likely that I will go the same way your mother went and it terrifies me. I have seen too much and know too much. I would trade pretty much any medical diagnosis for this. I would prefer a short bout of cancer, no matter how painful, to the prolonged decline in function and cognition that is AD.
I used to ask about the progression of the disease but the nurses, caregivers and Drs were always nice, but evasive. Your description mirrors much of my own experience. My mother woke up one morning and just stopped walking, then a year later she just forgot how to swallow and stopped eating. The day she died they called me at 6AM and I went to see her and spent the day with her. She was sleeping the entire time and I sat there and talked to her and played her favorite music.
It was a nice day, a calm, peaceful transition to death. Thank you for sharing your story — it will help everyone who reads it to understand. Thank you so much for this. I thought i was a monster, that maybe all the years i resented my mother for her neglect -whether it was for work, traveling, etc etc- had made me insensitive to what had happened to her.
It still scares me, of course, but when i read that part about saying goodbye becoming easier for the family, it made sense. I had cried so many times before, i had wondered and angered about how unfair it was, how fast the disease had worked, how young she had fallen to it, and we as a family had been preparing ourselves for this loss for years now.
We already had been in the stages of grief, bargaining, depression, anger, and by the time she died, all we had was acceptance and peace.
Again, thank you so much for writing this, it made me feel not alone. It is called anticipatory grief, when caretaking a loved one whose personality and memory is slipping away towards death. And the death feels different than other death.
Mom died this afternoon. I have felt resentment also, and wonder now if I was selfish. All of it is understandable in you, and I appreciate your writing so eloquently.. Alzeimers Dementia is in my opinion the worse disease. My mum passed away 24th July 2 weeks after her 91st Birthday. She suffered Alzheimers Dementia for the last 3 years with a Benign Tumor against her brain apparently growing very slowly.
She was in a nursing home for 2 and a half years. I noticed she was not eating or drinking well, not talking much at all. The last week she would only say a word like she was unable to say what she wanted and was crying very depressed. She was also falling asleep on the chair with her left hand shaking really bad.
I called the head nurse and they said its the last stages of Dementia. Yes maybe but I need her checked at the hospital. They gave her the intravenous antibiotics plus fluid glucose. She was always sleeping she unconscious when she did open her eyes I would give her a drink with a sipper cup and ice-cream very slowly but I had to do this.
She was so hungry and thirsty my heart melted. This increases a person's susceptibility to potentially life-threatening infections, according to the National Institute on Aging.
These effects on the body are most pronounced in the advanced stage of the disease, which lasts about 1. Alzheimer's disease is the sixth-leading cause of death in the United States, according to the Centers for Disease Control and Prevention.
However, deaths from Alzheimer's disease may be underestimated, because death certificates often list pneumonia or another complication as the cause of death, rather than the underlying Alzheimer's, according to a study. The study estimated that as many as , people in the United States died from Alzheimer's in Editor's note: Portions of this article were previously published on LiveScience.
Original article on Live Science.
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