The Loss of My Sister

This is hard to write, as my sister still is alive. There are only two of us, the siblings of two honorable parents, flawed as all of us are, who did the best they could and were supportive all the way. My sister is three years younger than I. She lost her husband, her true love, nearly five years ago to Parkinson's. His disease came on quickly, and within a few years he was gone. She lived as a widow for a while but moved into a "senior care facility" when her two adult children recognized she was forgetting things at an alarming scale and was getting lost in the area where they all three live. Her children managed the sale - the modest house brought a tidy sum in a quaint, older Albuquerque neighborhood. That would have been capable of supporting a "normal" retirement, along with her savings and public-school teacher's pension, but the cost of special care is depleting her savings at a significant rate.

The Independent Living Wing features nice single and double occupancy apartments with a central dining area and pleasant social areas for TV and card games, etc. Residents come and go at their leisure, both inside the facility and, with proper sign out, can leave for a while. The Advanced Care area includes locked doors to ensure the residents do not exit and walk away - unaware of where they are. In my sister's case, she enjoyed the former until she walked away and was picked up by a friendly motorist who brought her back to the facility and made sure she was checked in properly. That occurrence made it mandatory for her move over to the wing for those with more serious memory declines. She has experienced more and more advanced dementia until now she hardly knows her own (adult) children or who I am. She speaks with words, but the words seem to be random - are not sentences - and make no sense.

On the positive side, she seems very happy and "chirpy" and is a pleasure to be around, according to the attendants in the facility. Yet her memory decline seems so precipitous that any meaningful conversation with her on the telephone now is impossible. She no longer has a phone: she cannot remember how to use it any longer and loses it. So, my communication with her now takes place only when her son or daughter calls me when they come to pick her up and take her to one of their homes for a meal.

What causes such a fast and remarkably crippling decline in one's mental acuity? Certainly, Alzheimer's is a terrible disease and appears to affect more and more aging people. To see own's own loved one struggling so dearly is heart breaking. I feel guilty as it's very hard for me to get away to visit my sister in person, given my own wife's post-stroke health issues. It's not clear when, if ever, such a visit in person will be possible. And would she even know who I am? She seems uncertain on the phone while I go through my repetitive litany of stating and restating I am her brother along with my name. She seems to grasp it after a while, but I am not sure.

Entering the phase of my own life, at age eighty, when physical and mental limitations become more and more important, if not dominating, is unsettling. I'm fortunate to be a long-time member of a small men's book club here in Austin. In addition, six of us who are "ham radio" enthusiasts (since our teen-age years) meet weekly for lunch. These two key social connections along with maintaining contact with cousins and a few other special friends along the way are meaningful life markers that increase in importance every year.

 

 

 

27 Responses

  1. A heartfelt and loving accounting of Sally's condition. Questions with no answers, wishes for connection and communication no longer possible. My memories of Sally will forever be those of a truly happy, giving, and caring cousin. Few of us will have control of how we exit this existence. All we can do is to try to do our best and to be grateful for our every loving relationship with our family and friends. It's all about love. Well done, Jim, well done.
  2. Sadly, we share many of the same experiences you mention in this blog, Jim. The good one, of course, is sharing the wonderful experience of ham radio--62 years and counting for me. Coincidentally, my wife and I returned to the Albuquerque area to move my Mom from this home into a senior facility. While not as sharp as she once was, she still remembered us and we were blessed to care for her that last year of her life. We honored her DNR wish, but that was so difficult. I too suffered a stroke but was fortunate my recovery was complete and relatively quick. In fact, added another avocation to my life when I bought a race car later that year. The fun, excitement, and great memories (racing at Laguna Seca in the rain!) were more intense and condensed then those I have from a long and enjoyable "career" has a ham. I made many friends in both and have some in the latter for nearly 50 years now. I lost my brother when we were both in our 30's. My Mom was devastated by his death and never recovered. That loss was, in part, a factor in her early death at just 72. I am now the patriarch of our extended family, something that came much too early. All of these experiences point out how important it is to stay in touch with our loved ones! Those relationships are more valuable than all our other experiences. I had great career opportunities, wonderful vocational and avocation experiences and great loves. I wish the best for you and your loved ones and look forward to re-reading Contact Sport when I whittle down my reading list. 73, Bill, K8TE
  3. Love you dad. JG3
  4. I always loved Sally. I’m so sorry you all are faced with this terrible disease. Your mom was our Girl Scout leader!
  5. Jim, I sympathize with your situation. My mother had Alzheimer's. Hers was very slow - first becoming noticeable when she was in her 70's. By the time she passed away at 92 she was little more than a vegetable. What a sad way to end life. At first it is frustrating to them but at some point they no longer realize what is happening. Perhaps that is a blessing. Let's hope someday there will be a cure for this terrible disease.
    • JK James George
      Tnx Marv. So many of the comments have been from people who have experienced it in their families. Hard to believe how insidious this is in mankind these days. Jim.
  6. Jim, I’m sorry you have lost your sister to this horrible disease. We had to place Virgil’s dad in a nursing/rehab facility 11 months ago. He has declined so quickly that he cannot eat or walk. While he has the strength to walk, he can’t remember to put one foot in front of the other, or to look for something to sit on before sitting down. We finished the garage space on the first floor of our casita with handicap features, spent months getting his benefits switched to “home care”, trained in feeding him through his tube, found caregivers and equipment with the plan being to let him live out the rest of his time here with us. In mid-June, Virgil’s mother (who has medical power of attorney) decided not to let him come. She lives in the Rio Grande Valley and did not want to uproot herself or have her husband so far away, both reasonable concerns. The result of all this for us is that the busy time of planning and “doing something” has abruptly ended and we are dealing with the grief you are so familiar with. I wish you and your family peace. Knowing you’re a reader, I’d like to recommend the book I’m currently reading The Second Half of Life, by Angeles Arrien. I guess I would put it in the “Self-Help” genre. It’s a “guide”, for lack of a better word, through 8 transitions we encounter in the second half of our lives, if we’re fortunate enough to reach old age. If you’re interested in reading it and would rather borrow it, I could put it in your mailbox after I finish it in a week or two. Very best regards, Jerri Hinojosa
    • JK James George
      Thanks so much Jerri. My heart breaks for you. As to the book, thanks but I am so overwhelmed with my book club and my own orders, that I have twenty in the "to read" pile. So had better hold off for now. Big hugs to you. Jim.
  7. Jim, this is heartbreaking to hear about your sweet sister, whom I remember as a friend of my younger sister, as a very effervescent and delightful person . You are so right, Alzheimer’s is an insidious disease that is affecting many people in our generation. When it affects those we love, we feel totally helpless.
  8. I feel your pain. And can only imagine your memories of you sister will help you during difficult days.
  9. Sad, so sad, to see someone decline when they are family. I know that Gail worries about me but so far my memory seems to be working at a normal pace. You are in my prayers for support and encouragement. In my own case, I hope my heart stops before all this happens. I took a memory test through my doctor (Gail insisted). I aced the test. Even my doctor said he could not have scored as well as I did. So for the moment I guess all is well.
  10. JK James George
    From Anon-1: Hi Jim, Thoughts and prayers for you and your wife and your sister. Alzheimer's is truly an ugly disease. My grandmother died from it, my mom has been diagnosed for 5-6 years now; but fortunately, my dad and her are able to still live together, with a lot of help from the 5 kids. Although my mom can't remember a thing for even a few seconds, she has been creative in the kitchen. She will write down one line of a recipe at a time and then throw it away as soon as she does complete that one. Amazing. My uncle just went into memory care. My wife's mom and two of her aunts/uncles are also in assisted living/memory care for Alzheimer's. I read a while back that it wasn't even in the top10 research-funded diseases, but I hope that has changed.
  11. JK James George
    From Anon-2: Jim sorry to hear about your sister. Several of our friends have succumbed or are dealing with this terrible disease. Just thinking about you all,
  12. JK James George
    From Anon-3 (An MD In Japan) Jim, I am saddened on your sister. Alzheimer's or the other illnesses of dementia always be accelerated faster than we wish not to. We have experienced that with my mother and parents in law. It is a blessing in this seemingly worst thing that she feels happy. Looking back the life of my mother, I feel she has spent those days of declining capabilities for us to accept her passing away. I know the medical science has revealed a lot about the process of Alzheimer's. The process to deplete and augment precipitation of the beta amyloid protein in brain. That knowledge may bring us the medicine to treat or to prevent it in some time. I wish her and your family peaceful lives. It is good for your sister. I know you are still caring for Diana eagerly every day. I hope she is free from anxiety etc.
  13. JK James George
    From Anon-4: I too am saddened by the state of Sally’s health. I quit calling her a couple of years ago because it seemed to trouble her that she couldn’t “place” me in her recollections of what has become her “previous life”. Wish you the best and I’m sure you will manage your relationship with Sally in the most loving manner possible. Best to you and yours…..
  14. JK James George
    Fron Anon-5: This is a sad story but happens far too frequently to too many people. I sometimes worry that I might start slipping into the world of dementia myself. I forget far too many things these days. My friend, I realize that you have many burdens. But you are a soldier and will carry on with dignity.
  15. JK James George
    From Anon-6: Jim— I read your blog and understand so well the feelings you are going through. I felt fortunate to have been able to be with (his first wife) during her last years with Alzheimer’s. She always had been so independent, and for once in her life she needed me to help her. Although she couldn’t understand it, that made me love her even more. How difficult it must be for you not to be able to see and try to comfort your sister. You have had more than your share of trying times.
  16. JK James George
    From Anon-7: Well said… And tough…
  17. JK James George
    From Anon-8: Jim, My deepest condolences for the loss of your sister, I just lost my wife in November of 2021 and know how hard it is to lose someone who has been with you for many years.
  18. JK James George
    From Anon-9: Hi Jim I am so sorry to hear about your sister. I can't even manage what it is like to deal with this problem. You would think that after all these years of research there would some progress on the treatment of this terrible affliction. I wish you and your wife peace and comfort in these difficult times. (My wife) and I will be thinking of you often and hope that things get better.
  19. JK James George
    From Anon-10: Jim, This is so touching and so true. I am so sorry that you, her children, and she are living this. It is very unsettling seeing and realizing our own undesirable aging processes. Thinking of you and a hug to both you and Diana,
  20. JK James George
    From Anon-11: Jim, Terrible to witness a loved one fade away. We never know what we have to deal with at our end of days. My wife is dealing with chemotherapy now that’s disruptive to say the least. I’ve joined you and others in knowing what being a helpmate entails...
  21. JK James George
    From Anon-12: Jim, Very sorry to read your latest posting! Take care,
  22. JK James George
    From Anon-13: Hi Jim, So sorry for what you are going through here. For one, I cannot believe you are 80...how did this happen? That being said, you are in good company...Sir Paul McCartney is also 80 and look how he's doing. I flew to Seattle just to see him...but he was still 79 in May, a mere piker. & Last night I saw Bob Stroger, famous Chicago blues bassist, who I also saw in the 70's when I lived in Chicago...and he's all of 91 years old and still going strong. These examples of agelessness make your sister's situation all the more unfair. Sigh... Hang in there. And please give my best to Diana. Miss you guys.
  23. JIM - I know full well what you mean when you say,"...the loss of my sister...who is still alive." My Dad went through years of advanced Alzheimer's with my Mom as caregiver. Here is a poem she penned while my Dad was still alive but in a care facility: THOUGHTS OF YOU Nights without you are lonesome -- Nights without you are sad. When I think of our good times together I thank God for what we had. All through the years you were there for me Whenever I needed you most. Now that we have been torn apart I’m feeling so lonely and lost. I awake from a restless sleep -- I reach for you and find an empty space. I hold your pillow close to my heart As I envision your dear face. Tears slip slowly down my cheeks As I whisper your name in the dark. I hope you know I still love you -- Although we had to part. Vivian Brezeale 2001
  24. I feel your pain, Jim. I don't know if you remember me, but I spent time with you at Dan's funeral week as I was staying with Sally who has always been one of my favorite people. I, too, try to talk with her when Amy or Andrew pick her up, and find that as difficult it is to communicate with her, she is still the same gentle soul. I'm so sorry that this disease has robbed her of most of who she is, but I choose to think of her as the person I taught with for so many years who embodied kindness, gentleness,creativity, and intelligence. I love her too.
  25. SEA
    Jim, Your pain resonates deeply with me. I am so sorry to learn about your sister. I am sharing the same experience. My sister Martha, who is four years older than we are, is in the same situation. I haven’t seen her since before Covid, she wouldn’t know who I am and traveling has become very difficult for Mitch and me. She is in Knoxville, where she and husband moved to be near his daughter, when Martha began showing severe signs of dementia 12 or 14 years ago. They are both in a retirement center, she in the Alzheimer’s unit, he, at 89, in independent living. Other than ALS, there are a few diseases worse. My best wishes to you & Diana. I know you are a steadfast caregiver. At 80 we just keep on keeping on, thankful for our blessings, dealing with obstacles as best we can.

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