Dealing with Grief of Loss and Alzheimer's Madness
Dear Forum Friends,
I have been checking in but haven't participated much since the loss of my best fury friend of 14 years. It was just the last straw for me, and I continue to be filled with grief. I decided to commit my feelings to writing in hopes that it might purged some of my pain. I share this in hopes that it will help others who have expressed grief and sorrow in their journeys to know they are not alone. Please forgive me for such a long post. Thank you all so much for all of your support.
It is March 13, 2024 at 5:23 am. I have been awake since 3:30 am. I am unable to sleep and I continue to cry due to the tremendous pain I feel over losing my best friend and furbaby, Kayce. Losing her has plummeted me into a pit of darkness and hopelessness worse than the pandemic. I cannot stop crying. She gave me so much love and companionship, and now I am so empty without her. It has been a month yesterday since I lost her. I still have flashbacks constantly about the day she died, the sequence of events leading up to her death and cannot believe how quickly something you love so much can be taken from you, especially at a time when you need her the most.
Some would think me silly but they do not live in a loveless marriage with a man unable to give love and affection for 51 years. They do not live with Alzheimer’s destroying your husband every day. Watching a person deteriorate to someone whose face and eyes have become almost catatonic and gravely sad. They do not live with a monotonous daily routine that is slowly robbing me of my sanity, hope and peace. They do not live with hopelessness that it will ever get better, the fear of what will happen next and how you will manage.
People say I am strong, but I am crumbling inside. My only strength is my faith in God. When you come to a place in your life where you recognize that you have no control over anything, you become broken and disabled. I now realize how dependent I was on the material world to make me happy and how these things only provided momentary joy, not the peace I long for. I now appreciate the depths of pain and sorrow that others have and are feeling about loss and struggles. I truly have remorse for not being more of a comfort to them. I guess those are my silver linings.
This state of mind feels like I am in a deep dark pit. I am at the bottom and I am unable to get out. I just peer up into the darkness and feel that this state is permanent as it doesn’t get better. It just seems to get worse and darker. I continuously pray for deliverance from this pit, even if it is God’s plan for me to be part of the 20% of caregivers who die from Alzheimer’s caregiving. I just pray it will end – either pull me out of this pit to a life that holds hope and peace or take me to be with the Lord.
I want to tell my family and friends who support me how much they help me get through the day with their kind words, calls and empathy. I know that they are God’s way of gently showing me He is here. I am so very grateful for my dear sister, Marge, who listens to my complaints and crying. She sits by my side quietly while I cry, she sits by my side and helps be strong as I say goodbye to my best friend. I am beyond grateful for her. I do not know how I would endure this pain without her. I worry that she is absorbing my sadness and I don’t know what to do. I try not to make her feel badly with my situation.
I thank God for my sister Linda, who has comforted me and held me on many occasions. She knows the right prayers and words to say. She has lived the Alzheimer’s life and knows the fears and hopelessness of being frozen in a delusional world without any escape.
As I write this, I feel selfish and self-absorbed by my words for I know there are so many people who are suffering from war, famine, homelessness, cruelty, pain etc. I am warm. I have a wonderful home and family. I have been blessed beyond measure. Yet I cannot seem to just focus on my blessings. I continue to pray, to hope and to try with all of my strength to appreciate the simple things that can bring joy so that I can see through the darkness for a little while in hopes that it will sustain me for another day.
Comments
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Hope that made you feel better, nicely said
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I am so sorry. It sounds like Kayce was an amazing companion for you in this miserable stage of your life. I am sorry for that very real loss.
You are in a terrible situation and hurting-- that is real. There is a lot of suffering in this world, but it isn't a race to the bottom-- your current situation is a painful place to be, and I am sorry you are still there.
HB
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Thank you for sharing your pain. We understand what you are saying and going through. Sometimes we only see the strength God gives when we are holding onto our last thread and we sense that also is beginning to fray. I've been far removed from God for a long time but it is true that he is near the brokenhearted and even though I have been a lousy "Christian" for so long I know that he is still with me and has never left. "When we are faithless he is faithful." I've had so many faithless moments but that doesn't change him or disappoint him. We think he is like us but he's not. Most times, sad to say, I only see him when I look back. Losing our friends is always hard and I also miss everyone of them.
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I am so, so sorry to hear of the dark place you're in right now. Please don't beat yourself up for being sad. It's OK. Animals can be such a source of comfort and when the time comes you may be able to love another one again. Fortunately, they can return your love and caring, unlike your DH at this point. If you have to take it hour by hour, do that. Sometimes life sucks...
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Comparing your suffering to that of someone in a famine, war, etc is not a good long term coping strategy. Please consider telehealth therapy for some relief for yourself if at all possible. I’m saying this as someone who tried coping that way for decades & was ultimately diagnosed with PTSD & told it was a miracle I was still functional given what I went through. There is hope to feel better, even if you can’t see that today. Sending you strength and comfort.
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Denise, I am certainly not trying to be an armchair doctor here and provide a diagnosis. But I do want you to know that the ways in which you describe your emotions reveal deep emotional pain. The suffering, the hopelessness you feel, having no control and wanting a way out—I know that state of mind very well.
I have battled depression my entire adult life—-long before I became my DH’s care giver.
What I wish to tell you is that IF you are clinically depressed, you can feel better. When the right anti-depressant is found; when the right therapy is found, your suffering can be lessened. I hope you can see the value in reaching out for diagnosis and treatment. Just expressing your most profound sadness here is reaching out for help but I believe you could benefit more.
Just like dementia, depression is a soul stealer. Just like dementia, depression lies to you. Just like dementia, depression has no cure (but it can be managed). Just like dementia, it is hard to find treatment for depression but you can and deserve to find it.
And finally, it is a wonderful thing that you loved your sweet Kayce so much. Remember she would want her Mama to grieve for her but be healthy enough to provide another fur baby a home someday if you want to and you can. Kayce would want Mama to love and be loved again!
Please accept my thoughts in the spirit they are given with empathy and understanding.
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You are so right about seeing God's work only when we look back. I had a vivid dream in 2018 which I hold on to as a head's up to how my life would take a bad turn, but I would eventually come out of it. It involved me walking and coming upon a dark forest of thick prickly vines and trees. I hear a voice say to come in, it will be ok. I entered the forest and came out on the other side to the most beautiful beach, water and joy. The dream happened a week before I fell in the shower and badly injured my back which has never recovered. Then my DH as diagnosed with Alzheimer's, then he had a detached retina with 3 surgeries, followed by my back surgery which failed to help, then my sister falls and has a brain bleed, I take care of her for 2 months in my home, then DH has knee surgery. I could go on but I won't bore you with the details. I am hanging on to that dream as if it were God's promise that one day I will be out of the dark forest and experience joy again.
Thank you so much for your kind words.
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Thank you so much. I realize I am clinically depressed and am currently taking Wellbutrin. It was helping for awhile but obviously not now. I see my doctor on Monday and will talk to him about this. I never understood or appreciated the suffering of people with depression and other mental health issues. This experience has opened my eyes.
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Thank you. I believe you are right. I see my medical doctor on Monday and will tell him what is going on. I will ask him for a recommendation of a counselor. I went to a therapist 2 years ago and I didn't get much out of it. She gave me the space to vent and express my feelings, but it didn't help me. I read about PTSD and also how caregivers are prone to heart issues. About 8 months ago, I started having all kinds of physical systems from chest pain, breast pain, stomach issues and headaches. My wonderful doctor explored them all - nothing is physically wrong with me. What an embarrassment!
Gosh Housefinch, I am so sorry that you have suffered for decades. Thank God you got through and are able to share your experience. I will hold on to the hope of feeling better as you expressed. God bless you.
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@Denise1847 please don’t feel embarrassed for seeking medical care for those symptoms. As a physician, I know we do patients a disservice by making them feel guilty or silly if “we can’t find anything” on a test to explain their symptoms. You have endured very difficult circumstances from what you’ve described. Anyone would eventually feel physically crummy if they are in constant crisis management mode. Sending you strength and best wishes for whatever you find helps you feel better
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Just to share a bit further—over time I have been on three different anti-depressants (with dosing adjustments) because I built up resistance and they stopped working.
Lexapro worked the longest and had no side effects for me. Cognitive Behavior Therapy is another tool that helped immensely. Your journey is different but my point is, don’t quit. You deserve being the healthiest you can be. So glad to hear you are under a doctor’s care.
All good thoughts coming your way with a cyber hug thrown in!
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It's crushing to have your fur-baby die on top of everything else. I've been there, and it was the saddest day of my life, I think, even worse than when my parents died. It took DW and me months to get over it.
I just discovered a set of robotic pets on alzstore.com:
<https://www.alzstore.com/doll-pet-therapy-dementia-s/1516.htm>
They're not the same thing as a live pet, but on the other hand, maybe they can provide some comfort, without the need to care for one.
Wishing you strength.... Your pain is real, it's yours, and there's no need to compare it to anyone else's.
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Thank you for your kind words. It is so comforting to know others understand because they have also experienced the depth of the sorrow that the loss of a pet brings. You are right. I lost my mom and my sister and did not have near the grief. I read about how pets give you such unconditional love and form a strong bond that is inexplainable. I actually bought that dementia dog for my DH hoping it would comfort him. He didn't want it so I sent it back. It wasn't soft and cuddly. He used to hold our dog like a baby and would rub her belly. She loved it. He still asks where she is every once in awhile and, of course, that prompts me to cry. I am looking into adopting a puppy mill momma. Some of the poor dogs spend their lives in cages just producing one liter after another. I think that the dog will actually be rescuing me.
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I am looking into adopting a puppy mill momma.
Other choices in a similar vein are adopting from a shelter, or adopting from a breed-specific rescue group that often needs to re-home older dogs. Fortunately, you already know the pluses and minuses of having a dog. Good luck!
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It is serendipity that I chose to look at this site today and saw your post. After 7 years of dealing with my husband's Alzheimer's, he rapidly deteriorated a month ago and died last Wednesday near midnight. I posted about the final hours with him, the nightmare the hospital created around this, and described my final moments with him. I cannot tell you the agony I am in, it is truly unbearable. I don't know how I am going to survive this pain. I have no one- no family, no friends because Alzheimer's seems to drive people away over time. But two things you said went straight to my heart. First, my marriage of 38 years was one missing love- I considered him the love of my life, was IN LOVE with him every single day even now, but I never felt he saw me in the same hallowed light. I felt like I spent all those years trying to get blood out of a stone. There were many reasons I stayed, not the least of which was his incredible service to our country as a Marine, and the fact that over the years he kept getting different cancers from Agent Orange. His personality was the stuff of legends. His bright, relentlessly optimistic spirit, his stunning charisma that wowed people all over the world, were all things that held my heart. But in private, he was cold, aloof and often angry for anger's sake. I was always on the outside, emotionally. He was, in later years, a great travel companion, but the emptiness always endured. But the second thing I wanted to tell you is that in a way we are soul sisters about dogs. I truly believe they are a higher life form. They come to earth with all the traits Christ asks us to aspire to- unconditional love, loyalty, forgiveness. Nine years ago we got a male Maltese pup who is now 7lbs. We had always had dogs, which we both adored, but this one- his name is SweetPea- is some sort of spiritual being. He watched over my husband all these years, a vigilant little guardian and gave him endless affection. But it was always clear that he was "my" dog. He suffered during this last month, amidst the confusion and ambulance workers and crying and stress, but now, during these days of deep despair, he spends every moment at my side and looks into my eyes often to see how I am doing. This little dog is keeping me alive, still in touch with daily habits that I must keep, like feeding him, etc. I KNOW the pain you are suffering over the loss of your baby. There is nothing on this earth like it. Somehow, though, dogs have a way of guiding your heart after they leave this life, and you find that because their love is so simple and pure, it means you are left with an uncomplicated treasure in your heart. I pray, pray, pray, that you open your life to another pup. I know many here strongly advise against this, but I can only imagine they may not have quite the connection to dogs that others have. The moments of loving connection you will surely have with a new baby will lift you above your circumstances. The process of dealing with their daily needs/antics will give you respite from your husband. Yes, it's more work, but it is to save your spirit. I pray for you and pray that God lifts your burden and surrounds you with love.
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Thank you so much for your post. I am so sorry for your loss. I know my words are inadequate, but they are sincere. My DH had a terrible childhood of rejection and was a foster child. I always thought that I would be able to break his shell through love and giving him the life he never had. It didn't change and he only came to depend on me to run the household and all administrative stuff, yet he wanted to control everything. I was foolish for staying but I have a wonderful son so I count it all as worth it. I didn't realize how Kayce substituted for the love he could never give. We were truly connected in heart and spirit. Your description of dogs is beautiful and so true. They are God's example of how we should be loving. I am so glad that you still have your baby to hold on to. Every night when I go to bed, I look at where she used to lay and I cry. I think the Alzheimer's life was difficult before, but now the absence of love is unbearable. I am looking at adopting a rescue mama from a puppy mill. I want to help at least one dog to have a special life and I truly believe she will, in turn, rescue me. I know it will be challenging because these dogs have suffered so much, have many fears and will need to learn all of the basics of a home life. I want to channel my grief into making it worth something. I am attaching a picture of my baby for you. She was a shitzu/bichon and the sweetest, most loving part of my life. I thank God for blessing me with her for 14 years. Who knows God's timing in these things.
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Thank you so much for sharing. I know I could feel better if I could just escape this Alzheimer's madness and the monotony of the days slowly ticking by without any end in sight. This disease tortures the patients and their caregivers. Thank you for your cyber hug. May you continue to have joy and peace.
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Kayce is beautiful and you can see in her eyes the depth of her soul. You will always have this love and importantly the lessons she taught you. She showed you the depth and power of love, she gave you what you so deeply deserved and needed, and I have to believe that somehow, she is still guiding and teaching you from her place of peace. The emotional and spiritual treacheries of Alzheimer's burn to the soul, and to have an animal in your life, to me, is a critical safeguard to keeping us on the path toward believing that this life will always offer sources of hope. How exciting, and what a great distraction, to adopt a baby who has suffered and would be forever grateful to you for your love. I have heard over and over again that dogs who have been rescued return that favor a million times over. You have been given the gift of seeing that dogs are a sacred source of profound love, and I truly hope you take that baby into your life soon. I bet Kayce would approve. Please keep in touch. I have found few people who relate to dogs as I do, and I cherish knowing that there is a kindred soul out there. Please send a photo if you chose to move forward in your adoption. Blessings to you.
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Denise, this is Gigi my shelter rescue. She has saved me from despair since May when I got her. Her love and devotion is everything to me. She has love for my husband and misses him since the move to MC. I took a chance on getting a dog and I am rewarded every day. Please move forward with rescue. Hugs.
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Dear Dogsaremylife,
Gigi is precious. Last night I found a beautiful little girl (puppy mill mama for 5 years). She is only 8 lbs. I am going to meet her tomorrow. If I get her, I will call her Gracie as in God's grace because I think he sent her to me to rescue her and I. I am attaching a picture - she looks alot like Gigi only a miniature.
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Oh my goodness!!! She’s adorable! How did it go with her today?
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Thinking of you today....
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Denise, Gracie is perfect. My Gigi was 8 lbs when I got her too. I know that little bundle of fur will save you. I've been there. Hugs and keep in touch.
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Thank you everyone. We adopted Gracie yesterday and brought her home. She is a delight and warms my soul. She is very reserved and is just like a puppy in having to learn everything since she probably lived in a cage for 5 years. She is very thin and needs to gain weight and is missing several teeth as they don't take care of any dental needs. I will take her to the vet this week and I pray to God she is healthy as one never knows given the neglect she has suffered.
Her eyes reflect brokenness, and I am determined to show her a wonderful life and wipe away her sadness. She is so sweet. She is exactly what I need to help both she and I to heal.
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good outcome for both of you, I'm glad.
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You have a lot of love to give her, and I bet she’ll thrive with it 💕
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im so glad you got her! She will blossom under your care!
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So happy that Gracie has someone to love and care for her. She will return all the love to you. Finding her is just what you need.
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The sequel to Gracie's adoption is that we had to admit her to a 24-hour emergency animal hospital since yesterday and hopefully she will come home tomorrow. The poor baby had diarrhea since she came home and then became severely dehydrated. Her colon and the internal area where she was spayed shows severe inflammation. The vet said that she would not have survived much longer had we not brought her in. She has severe dental disease with loose and missing teeth, which we will take care of once she has recovered from her hospitalization. She also has infections in both ears and a grade 2 heart murmur. I really wasn't surprised by the heart murmur and dental issues because puppy mills don't medically treat the dogs. I am so glad I adopted her when I did as we have been able to help her get well and to enjoy being a dog.
She is such a sweet dog, wanting to please and was following me everywhere, watching me in the kitchen and snuggling next to me at night.
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Poor little Gracie. So glad you got her in time. She deserves love and I am happy she is snuggling with you already. Hugs and let us know how you are both doing.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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