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Interested in how other caregivers survive
Caregivers | Last Active: Apr 28 9:40pm | Replies (96)Comment receiving replies
Good morning, @alone! My caregiving experience is for my husband who was diagnosed almost 4 years ago with Lewy Body Disease (dementia). He is not incontinent yet. He's unable to dress himself, read, retrieve words, understand the concept of time, or do most anything. It's heartbreaking to (in reality) watch your loved one slowly die. Caregiving is journey that can only be accomplished in my opinion through love, praying for patience, and little (I mean LITTLE) breaks. Often if I can take a 10-minute break and talk to someone to hear a clear sentence spoken to me, I am good for another day. I rely on God to be by my side and give me strength. I also try to find the humor in our situation and laugh. Going to my support group once a month, gives me a perspective that is helpful. I can lay my feelings on the table, hear helpful hints from others, and realize that I am in better shape than most. Stay connected with groups like this and ask lots of questions. Over the years, I can see a huge change in myself. For one, I am more patient now. However, the goal line of ENOUGH patience keeps moving further away! I believe that my husband is providing me an opportunity to become a better person. Just continue to love. I will keep you in my thoughts and prayers. Hugs!
Replies to "Good morning, @alone! My caregiving experience is for my husband who was diagnosed almost 4 years..."
I like your mention of patience especially. I’ve always been a patient person but it wears thin more quickly now. You are absolutely correct that the goal line keeps moving. This is a very helpful post. Thank you for it!
In 2022, my husband was diagnosed with LBD, our newfound companion. His battle with this condition has led to a loss of balance and a significant decline in executive and spatial reasoning abilities. He's always been one of the brightest individuals I've known and my closest friend for nearly four decades. Witnessing his decline breaks my heart.
Adding to our challenges, my mother, who also suffers from dementia, resides with us. This past year has been a whirlwind: losing my father, selling a house in Arizona, and relocating to Washington to be closer to family. It's been a profound learning curve.
One of the most valuable resources for me has been a virtual caregiving class through the University of Washington tailored for those caring for individuals with LBD. This course helped prepare me for moments like my husband's first delusion and the heartbreaking instance when he didn't recognize me. Sometimes, leaning on my husband's shoulder and shedding tears provides a sense of relief, perhaps even a touch of catharsis for both of us.
I extend my best wishes to everyone on their respective journeys. May we find solace in the collective companionship and support, lessening the weight of loneliness along our paths.
Warm regards,
Kim Possible
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I can so relate to your experience. You and I could be twins. I try to keep my mind on one day at a time. But unfortunately, that is not always possible. I pray for patience constantly. I realize my frustration and resultant is not directed at my husband, but at our new constant companion, Lewy. It is so sad to see my husband robbed of his short-term memory as well as the last 10 years, his ability to communicate in a comprehensible manner, his visual and auditory cognition, his self-respect, his self-confidence, his executive functioning, his perception and his understanding of what is going on around him. Fortunately, or maybe unfortunately, he is still physically capable of handling his ADLs, albeit somewhat messily at times. He has also lost 70 pounds over the last few years. We are in the process of moving "home" to Cape Cod. I am trying to find a home long-distance with multiple trips to the Cape, getting our current home ready for sale (cleaning out 40+ years of "stuff", getting painting and renovations done). The upheaval is difficult for him, but the move is necessary. We will be closer to both our families and former colleagues. Each day brings a brand new stressor and I wonder if I will break under the stress someday. I constantly pray for patience with both myself and his LBD symptoms. Thank you for sharing. It is so good to be reminded that we caregivers are not as alone on this journey as it often seems we are.
Hang in there and now that others are doing the same. Pauline (Lena)