Visiting someone whose life is winding down
My husband’s daughter will be spending the next ten days visiting her father in his facility—she hasn’t seen him in over a year and I’ve tried to prepare her for his decline. But I think she will be shocked, nevertheless, by the change. I also think it will be difficult for her.
A woman I know has a grandmother who has Alzheimer’s and is apparently close to the end of her life. The grandaughter, who is thirty, hasn’t seen her grandmother in many years and is afraid to see her now.
A man I know didn’t want to see his father as the cancer was destroying him—he wanted to remember his dad as he had been.
I just heard from a dear friend whose beloved grandmother died yesterday—he lives in Europe and she was in the United States. He flew home when she was moved into hospice. He only returned back to Europe when she seemed to be improving. He’s back in the States for the funeral, exhausted, but glad he was with her at the end of her life.
My father died at 98 and I was with him at the end of his life. In the last weeks or so before his death, he began to look like a man who was dying. But he was also beautiful in his death, and his dying was relatively easy.
We each respond differently to end of life—there’s no right or wrong, but there are choices that are right and wrong for given individuals and given families. And I hope that the choices are made with thought and care—because they can’t be made twice.
I’d love to know what you think, and what your experiences have been, in similar situations.
Hi Judith,
I came across your story as a result of an item published on the BBC news website here in the UK and I must say how touched I was by your story and by your photo’s. I was particularly moved by the title of your forthcoming exhibition ‘I still do’. The reason being that my wife suffered a near fatal brain haemorrhage last September and although not the same as your situation I really identified with your words and thoughts which describe the loss of the person you love even though they are still physically there. I pray that God will give you and your family the grace to be the best support you can be and have the ability to face each new challenge with confidence.
What I can say from my own experience is that even in the most hopeless of situations, in Christ we still have hope.
I am convinced that had it not been for his intervention my wife would not be hear today. You can read about her story on the website link above.
I hope you will continue to be inspired and know God’s strength in teh time of your need.
With best regards,
Kevin
Thank you for writing and for your kind comments. I hope you, too, continue to find the strength to deal with the challenges you and your wife face, Kevin. I wish you both comfort and continued love.
I have lost my dear nan at the age of 91 ,she had alzheimer ,I am so glad I was with her until the end.
She died peacefully in her sleep but the grandmother I have always known to be strong gradually became a little girl,
I had to make the difficult choice to put her into a care home.
I want to add that families having somebody they love suffering from Alzheimer are suffering with them …I cherish every moment I have lived with her .
Dear Karine,
I have grandchildren of my own, and also had a Nana who was a very important person in my life; I understand the special bond that a grandmother and grandchild can have. There’s nothing quite like it. I know you must have brought your grandmother much comfort during a time that she really needed it—and she obviously brought you great love and joy.
Thank you for your comments.
Thank you for “I Still Do.” Your beauty and talent show through your love for your husband. My father’s decline was, all told, rather sudden and even voluntary in some ways. He began to give up some of his long obligations to my mother and let his children take over but it was all consciously done. My mother’s decline was much slower. Her many strokes and degenerating eyesight blocked her favorite activities of conversation and needlework. She was an artist in both. I now regret not talking with her more. You are right that choices can’t be made twice. Thanks again for your beautiful essay and the thoughts it engendered in my thinking today.
Thank you, Liz. I was very touched by your comments and experiences with your parents. I think that we all wish we had talked with our parents more—and I hope your comments will encourage other people to engage in more conversation and ask more questions. I’m glad you responded to what I had written—and I appreciate your letting me know that my words meant something to you. How are you doing?
Judith,
I’ll offer two perspectives — personal and professional.
At 10 or 11, my grandmother was diagnosed with “dementia.” I use the quote marks because there are more forms of dementia than I can name off the top of my head. I stopped going to visit her in the nursing home at 17 because I couldn’t stand to see her in a wheelchair, silent and staring into nothing. She died when I was 23.
As a sophomore in college, my mother was diagnosed with a particularly aggressive form of pancreatic cancer. She received the terminal diagnosis in February and died in September. I was there during my summer break, working two jobs to earn enough cash for the year, and watching her die under hospice care. A few months earlier, a classmate’s mother developed a mystery virus which put her into a coma and killed her within days. This classmate harbored a silent, but very noticeable resentment towards me because I had a chance to “say goodbye.” To quote a journalism professor, “All death is tragic.” I don’t know if there is an ideal death for anyone involved.
Professionally, I work for an Alzheimer’s disease organization and have learned a great deal about this disease. For everything it robs in memory and cognition, the disease does not affect the brain’s ability to sense things. The brain can sense loneliness and despair. It can trigger feelings of fright and sadness. Alzheimer’s affects how those feelings are expressed. Not wanting to ruin a memory is not a reason to ignore someone in their time of peril.
My mother also died as a result of pancreatic cancer; as soon as Ed and I knew she had the diagnosis, we moved from the east coast to the west coast to be with her. She died a month after she was diagnosed and we were with her everyday. My late husband died of a very aggressive cancer when he was 53—the day he was diagnosed I left my office (I owned the company) and told them about Jerry’s diagnosis and said I didn’t know when I’d be back to work. I was fortunate I was able to do that. I spent every minute of every day with him until he also died a month after diagnosis. I understand what you said—and said with such eloquence.
I appreciate, too, your comments about people with AD—Ed is still able to articulate his sense of loss (though not with the command of the language he used to have.) I know how responsive he is to his environment—to a touch, to a tone of voice, to someone who really cares. I’m very glad you’re working in the field and helping to spread the word that an AD sufferer is still a person—a person deserving of dignity, respect and attention. Thank you for writing.
Hi,
Just heard your story via the BBC website. I was touched.
In fact, I have to admit I had tears in my eyes whilst listening to you and seeing the photograph of your husband.
God Bless You, your husband and your family.
From a 39 year old man.
Ricky
Thank you, Ricky, for commenting and for your lovely words. Both are appreciated.
Judith, I was very moved by your pictures.
My mother had motor nuerone disease and died just over a year ago. She had been a physically active woman with great energy for life. She was frustrated as her body failed and it was painful to watch. I am grateful that I was able to spend time with her through her illness and to be with her when she died. I believe it is as important to invest the end of life with as much care and love as we do at the start.
I like what you’ve said, Ruth, and would like to quote it. I think it is a gift received, as well as given, to spend time with someone you love when they are helpless, alone and scared. But so many people—for complex and individual reasons—have trouble doing that. Many—including some health care professionals— have difficulty talking about and dealing with death. I’m glad you, and your mother, had an experience that was rich under difficult circumstances.
watching the video on bbc news website recently was difficult but also helpful, to know we are not alone. my father recently died from complications (pneumonia) after 5 years suffering from Alzheimer’s and it was hardest for my mother to watch the big strong man she married to slowly disintegrate (mentally and physically) in front of her eyes. anything that raises the profile of this terrible, but easily forgotten, illness is worthwhile to ensure that people who live with this disease (like my mother) get the help they need, to make life better for sufferers and their carers.
I hope your experiences, and those of others who have kindly taken the time to write to me, continue to spread the word about the disease and the affect it has on so many individuals and families. It’s a disease that impacts many for each person who is diagnosed. I wish you and your mother well, Ali.
I just saw the audio slide show of your husband and, truly, it made me want to cry (in a good way). What shone through for me in your photos is the great love story that is yours and your husband’s forever, steadfast in the face of both disease and death. I read somewhere once a writer that described her father’s death as a “good” death. I didn’t understand at the time, but I think I’m beginning to now; we can only hope that in sickness and in death we are surrounded by the people who truly know us and love us. Thank you so much for sharing your husband, and the love you shared with him, with us.
Helena, your comments touched me deeply—I’m thrilled by how many people send their best to Ed as well as to me, and who feel as though they know him a little as a result of “I Still Do.” Your comment about our wishes for a “good” death, as you’ve so eloquently described it, is certainly something I wish for. Thank you for your support and very kind words.
I have been thinking about my grandma a lot today…. she died couple of years ago. My mother, aunts and uncle were her caregivers. During her last months they were next to her day and night… Her diagnosis was very late into the progression of the disease, probably because “us” as a family would not be able to see all the signs, her difficulties to walk, or go outside by herself or being alone, all those things that you associate with aging… After her funeral, while cleaning her house my mom and aunts founded notebooks, where she wrote things she did not like to forget, it really moved me to think that she kept her fears to forget by herself…Two years has past and still we missed her. It is my feeling, that still so much need to create awareness about Alzheimer’s and I really appreciate your story. Thanks for telling it, to put it in pictures, and your words. My love goes with you and your love ones
Thank you so much for your caring comments, Silvia. I was very touched by your comment about your grandmother’s notebooks—AD is such a heartbreaking disease. Please let your friends know about your experiences—it’s one important way to help increase awareness and understanding. Thank you for writing.
My father has lung cancer and every time I see him a bit more of who he used to be is slowly dying. AD is like that the brain is dying and yet somewhere inside is still the essence of the person. Thank you for the beautiful photos of your husband. Anything that helps AD sufferers to be seen as people in their own right is great.
Thank you for writing-I wish your family and your father well. My first husband died of an aggressive lung cancer-I know that it’s a difficult disease, but I hope that your father finds treatments that bring him a measure of comfort.