IS THIS THE LONG GOODBYE ?
My best friend's mother just passed away after suffering from Alzheimer's for the last several years. As she sat by her mom's bed for the last week watching her fade away, I could not stop to wonder what it will be like for my mom when her time arrives. As I received the news uncontrollable tears began to run down my face. I knew a great deal of the sorrow that I was feeling was connected to my own personal grief.
At the Alzheimer support group that I have been attending for almost three years, my leader has been telling me that I was in a grieving process. The first time she said this to me, I responded that I was not, because my mom, was not dying. Now I understand all, too much.
It's funny because just the other day one of mom's nurses reassured me, with delight in her voice, that my mom was doing great. She shared with me how blessed my mom was and that she'll be around for quite a while. After hanging up the phone my emotions, thoughts and feelings ran rampant.
Yes, I understand that I am lucky to still have my mom, yet I also know how much more Alzheimer's can rob from her. Just thinking of how much worse she could become, as this disease progresses, leaves me feeling nauseous and sick to my stomach.
I must confess, that at moments throughout the years, knowing that there is no cure, I have wished that my mom could just close her eyes and go to sleep. I know that if she understood or could see what was happening to her, she would also wish for the same.
Today, I am in mourning for my best friend's mom and maybe also grieving for mine. For now I know that I must express what I am feeling to free myself from these haunting thoughts.
Maybe for my mother and our family this will be a long goodbye. Whatever it is I need to get back into the space of feeling grateful. In less than two weeks I will be going with my son to visit her. As long as I can see her smile and hear her say she loves me, I will push myself to come from a place of being thankful. Yet for now, I can only feel saddened.
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Hi Lisa, I enjoyed what you shared here and can completely relate. Anticipatory grief when someone has a terminal illness, is present but often overlooked. We know what's coming, but it's still difficult to fully comprehend or prepare for. You just don't know until you know. I wrote a little bit about it and wanted to share. My mother died due to complications from Alzheimer's in July 2013. Like your mom she was healthy and vibrant otherwise -- but don't let that fool you. The disease in the brain continues to spread and will eventually affect areas that force the body to come to a screeching halt. Seizures are what got my mom in the end -- her brain just couldn't take it any more. She had visible Alzheimer's for about 9 years. But . . . you know that all ALZ sufferers progress differently. Enjoy your mom right now where she is at -- I'm sure there is still so much love to share! For that, you are blessed.
ReplyDeletehttp://racingalzheimers.com/the-vanishing/
Hi Joanne, I also liked how you expressed yourself. I think many of us feel the same and yet some of us are just so afraid to say it. I'm hoping this post will open up many to a much needed conversation.Thanks for sharing. Lisa
DeleteLisa, thank you for your blog and for your posts. I especially related to this one and had another good cry--for you, for me, and for everyone who is muddling through this journey with ALZ in their family members. It is a daily mourning of what has already been lost. But as you so well stated, we can live in a daily gratefulness for what we DO have. And ditto what Joanne wrote ^^^ -- we can enjoy our parents right where they are at the moment. I too am a long distance from my parents, and make as frequent visits as I can. But it's wrenching to watch the disease rob them of their true "selves." This is the sixth year since Dad's diagnosis. I've had writer's block, feeling emotionally and physically drained, but as days go by, I'm feeling the need to write about it and it could be therapeutic for me to express my gamut of feelings. Just know that I appreciate your sharing! It helps us all in this walk together!
ReplyDeleteJane , I too at moments feel that writing is difficult yet when I do write which I encourage you to it does make me feel "better." So Jane get out your paper and pen and write my friend, just write and share all your feelings even if it is only to yourself. Hugs, Lisa
DeleteHi Lisa, thank you for sharing your blog. My mom also has Alzheimer's and has been in the late stages for about three years now, so I can often relate to your feelings. Your confession about wishing she could close her eyes and go to sleep is so true to how my family and I have felt. I KNOW my mom would've wanted the same. She would be so angry if she had any idea how things have been. I've gone through so many emotions in the last several years, but I have to say the hardest part was earlier on when she was so confused. When she was first admitted to a long term care facility three years ago, it was so difficult for me to see how confused she was about where she was. At that point she could still somewhat speak, feed herself if monitored, walk, and sometimes toilet herself. Being that she could still speak, sometimes she was able to tell us she loved us, which always made my day. She couldn't speak logically about anything else, yet simply hearing "love you too" was so nice. Yet, I knew the time would come when I would never hear that again. Each time I would visit her, I would always wonder if this would be the last time I would hear her speak. Three years have now gone by and a lot of grief, sadness, and anger, but I have to say that I am now more at peace with the illness and the fact that I will never have the mom I used to know back. She no longer walks, talks, feeds herself etc, but she does still smile (A LOT). I am unsure if she knows me, but she seems so peaceful now. As long as she is comfortable, content, and being well cared for, that is what matters now. It is definitely a long good bye filled with so many emotions along the way. The mom (& best friend) that I used to know is no longer here (and I miss her so much), but I am grateful that I can still visit and tell my mom I love her.
ReplyDelete~ Vicki H.
Vicki I want to thank you so much for sharing your feelings and your thoughts. Watching our mom's disappear is probably one of the hardest things in life. I believe hearing the warmth of your voice that she can feel all your love . Lisa
DeleteHi Lisa, I, too want to thank you for keeping in touch with us about your mother. This post really hit home, as well as reading what the others had to say about their experiences. My mother lives with Alzheimer's and yes, it really is a long goodbye. I am lucky to still have her, but she is no longer the mother I've known all my life. In a way, I do mourn for that loss. I love making her laugh and smile, and I never know what each day will bring. Some are good...some are not so good. But I love her all the same, as I watch her change from day to day. I feel so guilty saying this, but sometimes- for her- I wish that this would go quickly, just because I know she would hate everything about what it is doing to her. She unfortunately watched her mother, her father, and sister live with and pass away from complications of ALZ....this was her fear. So, for her, I wish her peace. And I will continue to try and make her laugh, smile and make sure she knows how much I love her. Thank you for allowing me to share. Reading everyone else's words is very therapeutic. -Alison
ReplyDeleteHi Alison, Thank you for writing to me/us. We are one of the "lucky" ones to still have our mothers to love. Yes not the same, yet we still get to hold their hands and catch their smiles. Cherish this,for one day it will all be gone. Hugs, Lisa
DeleteHi, Lisa. Thank you so much for sharing your thoughts and emotions with us. I have been the primary caregiver for my mom with Alzheimer's for the last eight years. I have only recently begun to reach out for support from others in this situation, and wish I had found this earlier. I can relate to so much of what you write and to the posts of all those who reply. I grieve the loss of the mom who raised me, but treasure the rare moments when she recognizes me, tells me she loves me, or even says something humorous, just as she did before ALZ invaded her brain. As the above poster states, reading others' words is very therapeutic. I completely agree.- Rita
ReplyDeleteHi Rita, I'm so gald that you contacted me and that you are reaching out to others who truly understand. I myself go to a support group at the Alz Assoc that meets twice a month for the last 3 years. it is such a safe space to share everything. I'm sorry for the loss of your mom and highly recommend sharing with others who have walked the same path as you. I'm here for you. Hugs, Lisa
DeleteHi Lisa,
ReplyDeleteI came across your blog today. It sounded just like my life for the past five years. My Mom had dementia, we started off in the upper part of her assisted living but after about two years she was moved downstairs as she declined. If I could only have those five years back. I was that friend of yours that sat by her bedside last September. I had lost my only sibling the year before and thankfully for dementia never had to tell my mother. So here I am, the only one left in my family. There were days that were trying, some great visits, some pretty good ones and some awful ones...and there were times where I was tired and probably should have had more patience on that particular day. But all in all, I have the memories of her always saying each day when I would walk in "hello my sweetheart" with a huge smile. I was the lucky one that the day before she died, one tear came out of her eye and she whispered she loved me. Enjoy your time with her. I'm still not over her not being here any longer and have to stop myself from saying "I need to tell Mom that when I see her"...forgetting she is gone.
Hi A, I'm so sorry to hear about the loss of your mom and your sibling. Thank you for reaching out to me and I think that if you read some of my other posts you will also be able to relate to them. I just want to thank you again for sharing with me and I want you to know that I'm here for you as well. Lisa
ReplyDeleteHi Lisa,
DeleteI'm sorry, I meant to type Nancy, not put anonymous. I have been fortunate. The last week that my Mom was alive, I was lucky enough to bring her back to her assisted living apartment and hospice came in. They were incredible and after all these months still contact me in case I need a support group. It's been a tough couple of years, I lost my grandson last week, my daughter was in her second trimester and the baby was diagnosed with trisomy 18...it's awful in case you don't know what it is as I had to read about it myself. So many losses in such a short time. As they all point out to me, I am now the matriarch of the family (wow that is scary). I wish you nothing but good days with your Mom. It is a terrible disease and it does rob them but I was lucky to have my mom until the age of 88. Please keep in touch:)
Nancy, I feel a loss of words . My heart breaks when I read about your grandson. I cannot even imagine the pain you and your family are feeling. I just want to send you a big tight hug filled with love. Lisa
DeleteOh Lisa, I can relate to what you're saying. I'm glad you are expressing it through writing - that always really helped me to sort out my feelings. This is a disease that leaves us feeling emotions from one end of the spectrum to the other and it's something you just can't understand unless you've been through it. I can tell you that I've felt all of the things you've mentioned. I hope the next couple of weeks go quickly and you'll be with your mom before you know it. xo
ReplyDeleteAnn ,it is so true how we all understand what each of us are feeling. The "world" we share with others who are living with this is filled with much love and support . I feel privileged to be part of it. Fondly, Lisa
DeleteMy Mom is in her room right now, watching a Barbara Striesand concert. Watching concerts is her favourite pastime now. Her knitting goes on to unfinished projects or attempts at a placemat turn hat instead. She used to run a business and make a dress in one night. Now her fragmented attempts to work are becoming worse. She is so happy though and relieved to be living with me the last few years instead of a home. She has said a couple times to my sister that she would rather die than go live in a home. However she has not been vocal about her living arrangements because she is apparently happy with how things have evolved. This is a true emotional roller coaster filled with sadness most of the time for me. I had hope that maybe she was misdiagnosed and it would be a more stable form of dementia from her open heart surgery. Maybe she would stay the same? Lately I realize this is not so. She is really 'fading'. I have seen the word used above a couple times. That is the most appropriate word for my Mother. I am joining a support group in downtown Toronto next month. I hope it will help me with my feelings so I can do a better job. It has been harder lately to smile. If I don't smile I worry I could make her sad. She never seems sad, so I keep trying to smile. Thanks for introducing your blog on FB.
ReplyDeleteHi JD, I'm sorry to hear about your mom, yet I am thrilled that you are joining a support group. I'm in one for 3 years that meets 2x's a month. Such a wonderful place to share your tears, fears and yourself with everyone who truly understands. You might enjoy reading my book of different parts of my blog. Many have been able to relate to what I say and I also "most moments" am able to come from being thankful and grateful what my mom and I have left. Sending hugs to you. Lisa
ReplyDeleteHI Lisa and all your Followers,
ReplyDeleteAs my mother's journey of 30+ years with dementia now comes to an end on earth, I know she will live on in spirit guiding and protecting me as she did even in her last days. I have come to frame my mothers death in one of gratitude. Not an easy thing to do, as it took me years to get to this spot when I lost my father as I kept looping in my loss for him.
I am grateful that I had such a wonderful mother, who taught me such powerful life lessons and encouraged me to share them with the world.
Grateful, for the pain and loss I am feeling as it defines the depth of our love and relationship. As the saying goes - you can't feel great joy without knowing great pain...they balance one another out and give value to each side of the coin.
Grateful for my mother sharing her purpose and mission with me, and trusting me to carry on her legacy of shifting our dementia care culture.
Grateful, for the overwhelming support and love from people all over the world who were touched by my mother's story and my work.
Grateful, for the new friends and colleagues who are joining together to work collaboratively to make a difference to improve lives of others dealing with dementia.
Grateful, to be part of a whole so much larger then myself.
Grateful, to know the blessings wrapped in caring for another can never be taken away, even when the time seems way too short.
Grateful, to know I did everything in my power to continue my relationship with my mother as the disease process ebbed and flowed.
Grateful, for the wonderful memories we continued to create throughout her life and which are being relived after her passing and still changing lives
Grateful, that my mother is still communicating with me even though she has passed, through words, and pictures and signs and symbols; each putting a smile on my face and calmness in my heart.
Grateful for passionate friends like Lisa, assisting others on this path.
Lori I admire you and although I never had the pleasure to know your mom given who you are, she had to be a very special human being. I am sure that not only did she inspire you, but everyone else who knew her. I am honored to be your friend, and to walk this path together to fight against this horrific disease. I love you. Lisa
DeleteDear Lisa,
ReplyDeleteI am sorry for what you are going through, my family has the same situation with me. I am still somewhat in my head, but I know what lies ahead and so do they. Soon, when?,, she will be set free. Think about that and how she will feel.
God Bless,
joe
Joseph my prayers also walk besides you and your loved ones. I greatly appreciate your kind words. Lisa
DeleteThis was a beautiful piece Lisa. It's amazing to see so many people relating to your experience and benefiting all that you share.
ReplyDeleteThank you. I do appreciate your comment. Lisa
DeleteLisa, I loved your piece! I will be sharing it for sure as it deserves to be read by many. I think your feelings resonate with a lot of dementia caregivers, especially those caring for their parents!
ReplyDeleteI especially agree with finding moments to be thankful and grateful!
Thanks so much. Hugs, Lisa
DeleteYesterday my mum cried and said she was finished - her brain had died. I told her she is still the same to me and that I love her. But it doesn't make it easy knowing that she faces this end or that her denial is fading after 8 years. I would sooner she stayed in denial. Heartbreaking. Like you I often wish her an early end so she may not suffer any more.
ReplyDeleteJane, I'm so sorry and I cannot imagine the pain you must have felt hearing your mum say this. I just returned from seeing my mom and it was a tougher visit. I'm here for you and I know you know that we share the same sentiments, (only)out of all the love we have for our mum's/mom's.
Deletexoxo
Lisa
Yes senior care is definitely a huge issue that needs innovative solutions. One of the most exciting that I've seen is GeriJoy. that takes the form of a lovable and intelligent talking pet inside an Android tablet. It provides the emotional benefits of virtual pet therapy, and it also serves as an avatar for GeriJoy’s staff, who provide live conversational responses
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